Time…It’s Relative

February 21, 2023

These past almost eight months have had me in a state of semi normalcy. Again, a relative term, what is normal? Setting the alarm on my phone to remind me to take my daily meds, the every six weeks blood work and 3 month PET/CT is vastly different from the previous six+ years of IV treatments. My previous scans ranged from every six weeks to every twelve depending on the treatment and whether I was participating in a clinical trial. Same goes for blood work, every week to every three weeks. I give thanks every time my port is accessed as the veins in my hands and arms are virtually missing in action and scary looking bruises can appear as if by magic. Wearing long sleeves year round is now a fashion statement in my book as are pants which can stretch and shrink depending on the current treatment.

Recently, I was asked to give a patient perspective talk for the good people at Foundation Medicine, Inc. As I was preparing, I revisited the past six and a half years. Reading old blog posts and looking at pictures since my diagnosis brought back not only memories but some distinct feelings of fear, gratitude, relief, grief, and joy. My trip down memory lane resembled a bumper car bouncing from one scan result to the next and one treatment to the next. I found myself exhausted yet exhilarated by my story. My reemerging theme: “staying in the game long enough for research to catch up.” From receiving my first Comprehensive Genomic Profiling report from Foundation Medicine to today, my medical team has continued working to find the weak spots where my cancer is vulnerable. We’ve tried standard of care treatments and out of the box treatments, all have done their part to get me to where I am today. But, as my dear-dear friend Dana, who is fighting his own fight, recently stated: “ It’s lots of work trying to get some more life.”

True that…

On a more trivial note, most of my hair is growing back. One of the side effects of EGFR TKI’s (one of which I am currently taking) can have is a challenging effect on one’s hair. For me this is manifesting in a mass of previously non existent curls viciously competing for space with multiple new cowlicks on my itchy scalp. Also new for me, fighting for the first time in my life to put weight “on”. The old adage of “you can never be too thin” does not apply in this scenario.

My news remains good. I remain stable with no new active cancer according to my January 31 scans. Relief and gratitude are the best words I can come up with but words for these feelings are woefully lacking. 

Gratitude to Foundation Medicine for allowing me to share my continuing story of which they have played a significant role. I am inspired by your dedication and blessed by your support.

Gratitude to Dana as he shows us that even though it’s hard, we give it everything we’ve got. Your support of me over the years means the world to me and I’ve got your back as you forge forward with your own story.

AND…Gratitude that we were able to celebrate Ben’s second Birthday with him and his parents! 

Life and time. The gifts that keep on giving.

How to Just Be

November 17, 2022

Struck by the synchronicity: On November 7, 2016, I was sitting in the infusion room getting my first doublet dose of chemo, looking at a 5% chance of surviving five years and feeling scared, overwhelmed, sad, mad and fragile. When I look at the picture of myself and that first infusion, I can’t help but wonder where that woman has gone. She was angry and pissed off that she was being asked to walk this path, and rightly so. I feel so much compassion for what she/I went through on that day. Determined to make the best of a crappy situation, spinning her wheels trying to find someone or something to blame. She/I was afraid of becoming a burden and of not being ready to say goodby.

November 7, 2022, six years to the day later, I was a floor away from that same infusion room preparing for my umpteenth PET/CT, laughing and chatting with familiar faces about Thanksgiving plans. I am having a difficult time putting into words this juxtaposition of events. Am I still that woman in the picture? Six years of cancer treatment has changed me, how could it not? I’m a specialist now when it comes to my own personal disease and there are times when I’m still sad, mad and fragile. My biggest fears remain the same, I am most afraid of becoming a burden and of not being ready or willing when the time comes to say goodby. I have the blisters and calluses of a trekker and the vision of a seeker, walking a road that I wouldn’t wish on anyone. 

In May, when I was in the hospital with a small bowel obstruction, I came the closest to date to facing my deepest fears. There weren’t any good options if the obstruction didn’t resolve on its own and I found myself at the mercy of fate. One of the surgeons bluntly told us that even if the obstruction did resolve I needed to prepare myself for more of the same, be it weeks or if I was lucky, maybe I’d get a few more months. My cancer was once again progressing and the damage was all too clear. 

A lot can happen in six years, a lot can happen in six months. My November 7 scan showed no change from the August scan, “Scan is stable…No growth anywhere!” . There are a couple of lymph nodes we are watching, my tumor markers remain in normal ranges and while I am still dealing with treatment side effects, I am not noticing any cancer symptoms. Mobocertinib has been a miracle drug for me and I cannot thank those responsible for stepping out of the box and prescribing and supplying this drug enough.

Six years since that first chemo infusion and five months into my seventh line of treatment I find the emotional roller coaster exhausting. But I’ll take it.

I’ll take all of it. 

No More Excuses

August 14, 2022

I’ve been delaying getting my teeth cleaned. Yes, I know, a healthy mouth means a healthy heart but my heart hasn’t been the number one concern. First, it was Covid and my March 2020 cleaning was cancelled. When I got the notice that it was once again safe to visit my dentist, my nausea was so awful that the thought of sitting with my mouth propped open for an hour brought on anxiety dreams. But six years of chemo caught up with my teeth and my two front uppers as well as the lowers began to chip. This was not a good look. I knew what was coming, they were going to take one look at my mouth and declare a massive overhaul. If I’m totally honest, I wasn’t sure how much longer I was going to need teeth so I’d need significant convincing for this to be a sound investment. I was ready for the “just make sure I can smile without embarrassment” discussion. Then I got my scan results from last Thursday’s PET/CT. 

First line from the IMPRESSIONS section:

“Excellent treatment response with near resolution of all FDG avid malignancy. “ 

The tears of relief were instantaneous as Jim and I embraced each other, shocked at the turn of events and overjoyed with the reality of the findings. “Near resolution” means that there are a few spots that show a bit bright but the vast majority of the metastasis is gone or shrank significantly with virtually no activity.

I’m still pinching myself, astounded by the significance of this report. My cancer symptoms had disappeared shortly after beginning the new treatment but the scan offers validation. Yes, I am still dealing with side effects but the scales most definitely tipped towards life and I am overwhelmed with gratitude.

It’s affirmative. I’m going to need my teeth for a while longer.

Sometimes a laxative just won’t fix what ails you. 

July 5, 2022

On May 5th, I was scheduled for a PET scan to see how things were going since starting back on Enhertu after February’s surgery. Prior to the scan, I told Melissa, my radiology tech, that I had been experiencing gripping abdominal cramps, nausea and vomiting for the past couple of days. Of all the scans I’ve had in the past six years, Melissa is probably the most familiar friendly face. Knowing that what I was experiencing was not normal for me, she requested a stat reading of my PET results which were questionable but inconclusive according to the radiologist. Feeling worse and already at the medical center, I checked into Urgent Care where a CT without contrast (meaning I didn’t have to pre-medicate with steroids, yay!) showed that I had an obstruction in my small bowel and I was auto admitted to the Hospital. I spent a very long six days (worst Mother’s Day ever) pacing the hospital floor with the occasional hall pass to walk outside with Jim and Tess keeping me company in the parking lot. For the most part, I didn’t have to deal with hospital food. IV fluids only for the first few days, progressing to a liquid diet followed by a soft diet of jello, pudding and yogurt. Eating, simply being able to eat anything solid and keep it down became the objective.

Small bowel obstructions that don’t resolve on their own are typically referred to surgery, and we consulted with three different surgeons. In my case, surgery was not an option. A reverse NG tube to drain gastric juices would have been the next step, buying more time with hopes that the blockage would still resolve on its own and making for less pain, nausea and vomiting. So what could they do if the blockage didn’t resolve on it’s own you ask? Keep me as comfortable as possible. I heard myself reprising the same old refrain that repeated like a stuck record in my brain when I was first diagnosed, “ARE YOU F&*^ING KIDDING ME!” Simply put, I didn’t feel sick enough to die but I also know that that’s not a prerequisite. It did feel like a sucker punch even though I’ve known that this could be a complication since the moment I found out that the cancer had metastasized to my abdomen. This part of the story has a happy ending, the obstruction resolved on its own. On the day that I was released, I kept down a half of a piece of toast and a few bites of cream of rice cereal which was beyond exciting! I left with instructions to follow a low fiber diet and promised to return to the hospital immediately if things changed.

To add another layer of uncertainty, disappointment and worry to the mix, scans also revealed that after 18 months on Enhertu (16 months in clinical trial) my cancer had progressed and I began the process of qualifying to try an oral targeted therapy, off label. This proved difficult from the standpoint that even though Dr. Patil at UC had first suggested I try this approach and Dr. Narayanan seconded his suggestion, Kaiser would not approve this drug’s use for my one of a kind mutation. After two denied insurer appeals, the drug manufacturer approved me for their financial assistance program and I am getting the drug delivered monthly at no cost.

Starting a new treatment as I’ve said before is challenging in many respects. Emotionally, I dealt with the changes it would mean when it came to drug delivery. My previous six lines of treatment have all been infusions. On treatment days, I would see my doctor and then head over to the infusion center where the room was full of other patients and nurses to watch over us, making sure there were’t any infusion reactions (of which I have had several) or any other problems. Being surrounded by professionals who knew how to handle any situations which might arise was always a comfort. I signed for and accepted this drug at my front door. Jim was saddled with the responsibility to watch over me, phone at the ready in case he had to call 911. We actually discussed driving to the hospital where we would wait in the parking lot as I swallowed my first dose, you know, just in case. It took me an hour and a half to muster the courage to take those first four pills and I’m happy to say that all went well. I understand this anxiety is reversed for patients who start out with an oral chemo and then need to switch to (or add on) infusions. I can say with authority that these changes are challenging and life altering. Every. Single. Time.

With my new oral targeted therapy I take four pills everyday. Instead of a big hit every two to three weeks (plus pre-meds), I get a smaller hit every day (without the pre-meds). Side effects are also different with this drug.  Diarrhea has been the most challenging, I didn’t even know this kind of diarrhea was possible. Constipation was one of my previous complaints with all the other treatments I had been on. Between the steroids and the anti nausea drugs, I became very familiar with stool softeners, magnesium and fiber. I have expanded my knowledge base to now include Imodium, Lomotil and Rice Crispy Treats (actually good for combatting the big “D” – who knew!). Luckily for me the low fiber diet I am on is also what they recommend for helping with diarrhea so there is a faint silver lining to this. For any cancer patients reading this, my nutritionist, Mary, recommended a product called Enterade, designed for cancer patients consisting of amino acids and electrolytes which I believe is helping a good deal. My SNMWO and his oncology nurse, Jamie, are keeping a close eye on me and I feel supported. As unpredictable and uncomfortable as the side effects are, I must also say that I have noticed a reduction in the cancer symptoms I had been experiencing making a strong case for continuing. 

I will see my SNMWO again in a couple of weeks with scans the end of July or first part of August. We are hoping to take our mini house on wheels for a few outings this summer once I can get the big “D”  a bit more under control. Time with Ben and his parents is always great for lifting our spirits and he is growing into a toddler force to be reckoned with. We are having so much fun 🙂 

As always, I am eternally grateful for the Love, prayers and good wishes coming my way. Truly the best medicine there is.

   

Dancing With Dreams

March 15.2022

“Now is the time to pick your favorite dream.” That’s what Dr. Fischer, my  anesthesiologist, said to me just before I was given a kiss by Jim for good luck, followed by a sedative to help me relax. Dr. Fischer was superb in her willingness to spend as much time as was needed with me before surgery. She listened to my past experiences with anesthesia and promised that I would not wake up in pain, nor would I experience any nausea. She delivered on her promises. She never said she would do this but I have a feeling that she was letting me know what was going on all the way through my surgery, reminding me that I was having the most wonderful dreams and that all was well. I wanted to be somewhat cognizant going into the operating room because I wanted to see the robot my surgeon would be using to look and probe deep into my abdomen. There was a potential dream/perhaps reality/out of body moment when I was looking across a large room with several people milling about, a giant machine taking up most of the space. That’s all I remember until I woke up eight hours later in the hospital room where I’d spend the night, an anxious and exhausted Jim there to greet me. 

Surgery didn’t go as planned. The two to three hour procedure ended up being five and a half. Dr. Whittier went above and beyond to get both my ovaries and fallopian tubes out. Three hours after she started, she removed my left ovary and fallopian tube (the one which had shown the most growth). After much searching and dissecting, she was able to trace the blood supply to my right ovary but because of scar tissue formation caused by the cancer, my ovary was adhered to my bowel and extremely difficult to see. She couldn’t take it out without potentially causing significant complications. She most definitely gave it her best, of this I am quite sure. While she was too humble to say so, her colleagues let me in on some of the details of her efforts.

It’s still hard for me to say how I’m feeling about this.  Getting news while still under the influence of drugs gives an otherworldly spin. My thoughts ranging from:

Well, one is out.  That’s better than none!

But the other ovary is still a problem, isn’t it?

That was the best sleep I’ve had in …

What do we do now?

I met with my SNMWO (Super Ninja Most Wonderful Oncologist) last Monday and we discussed the possibility of radiation. It would be very tricky in that area but he is going to reach out to Dr. Edson (who did SBRT to the lung nodule in 2019) for his opinion. In the meantime, I received Enhertu infusion #25 on March 7th.  We dropped the drug dosage a notch to help with side effects and so far so good.  The nausea hasn’t been as bad even though fatigue hit me hard a week out.  Of note, I experienced an infusion reaction about halfway through which surprised everyone, me included. Cheri and Shannon were on top of it, stopping the drip until my heart rate and BP came back to baseline before restarting. Thankfully, we didn’t need to employ additional drugs to stop the drug reaction.😐 I helped out by quietly focusing on my breathing, moving with the energy, visualizing my dreamscape while talking with my body. I’ll get infusion #26 in a couple of weeks followed by a PET/CT sometime mid April.

This is where the dance comes in.  Experience lies in the past, shaping our expectations of the future. This is why setting intentions, such as Dr. Fischer’s suggestion that I choose a good dream before receiving anesthesia was so powerful. And while I can’t prove it, I believe it’s one of the reasons I have healed so well and never needed post surgery pain meds other than Tylenol and Advil.

Even without the desired outcome, I’m putting this experience in the win column. 

OOPHOR…WHAT?

February 14, 2022 

Oophorectomy. Actually, a Salpingo Oophorectomy, that’s when they take out the fallopian tubes along with the ovaries. Not a hysterectomy, the uterus stays to stand guard over the nether parts. 

My ovaries…that’s where the cancer has been very slowly increasing for the past many months. Must mean that the treatment I’ve been on has stopped working, right? The answer is not necessarily that definitive.  Cancer care is complex, as much art and intuition as science. When what might be considered oglioprogressive disease presents, the idea is that just that area(s) can be treated with surgery or radiation therapy, like what we did with SBRT (stereotactic body radiotherapy) to a right lung nodule in January of 2019. Other areas remain stable and hence make this surgery a good option. Another very significant reason to have my ovaries removed is that they are still small enough to take out before they potentially cause further trouble. 

Two years ago, I began my clinical trial journey with UC Cancer Center, Lung Cancer Clinic.  Clinical trial number one was RAIN Therapeutics’ Tarloxotinib, under the watchful eyes of the imminent Dr. Ross Camidge, Candice Rossi, NP and clinical trial coordinator, Nikki Conti followed by clinical trial number two, DESTINYLung01, with the brilliant Dr. Tejas Patil and clinical trial coordinator, Josh Saginaw, RN.  My last appointment included not only thoroughly reviewed suggestions from Dr. Patil for ongoing treatment but a few tears as well.  I will miss them and am forever grateful for the compassion, empathy, dedicated care and friendship they have so generously extended. I’ve been assured that I can still consider them members of my oncology team and that has made this transition easier. 

Instead of totally changing gears with a new drug, (Number 7) we decided on treatment plan Number 6.5:  Salpingo Oophorectomy and continue with Enhertu (clinical trial drug which was granted Breakthrough Therapy Designation for NSCLC (HER2) by the FDA since I began the trial). What is true is that Enhertu has been very effective and we believe that I am still getting clinical benefit, despite the ovaries. I am once again back in the expert care of my SNMWO (for those new to the blog: Super Ninja Most Wonderful Oncologist) at Kaiser, Dr. Vignesh Narayanan.  Dr. Sarah Whittier, gynecological oncology surgeon and robotics and laparoscopic specialist, will be performing my surgery this Thursday, February 17 and I will resume treatment March 7.

I’ll have had a nice long break from treatment, my last infusion was on December 30 and my body is responding well.  Enhertu’s most troublesome side effects have been nausea, dehydration and vision issues. Acupuncture helps as does energy work and anti nausea meds. Most recently, I’ve added CBD oil daily.  Now that the side effects have mostly resolved, I’m gearing up for the restart of treatment with mixed emotions. One day at a time.

For now, I say goodby to my ovaries and thank them for a job well done.  Without them, we would not have been blessed with our incredible daughter who along with our loving son-in-law, gave us the gift of becoming grandparents! 

Yes, thank you. Thank you very, very much.

p.s. Look who just turned ONE year old!

Lucky Number 7

I experienced a Christmas miracle this year, yep, a downright honest-to-goodness miracle. My December scans showed resolution in the area of my lung that we were concerned could be progression. All other watched lesions fell within stable parameters and we didn’t need to be concerned just yet with a change in treatment. Christmas Day was spent watching Ben diligently rip the paper off his presents to get to the surprises inside. At ten months old, he was a bit confused with our delight at watching him do something that didn’t seem that out of the ordinary. Paper shredding is a favorite pastime. We on the other hand, found Christmas magic in his every move.

As we fast forward to my January scans, a size increase in another watched tumor was enough to be logged as progression and I am out of the trial.  While it has been at times challenging, I am grateful for the 16 months I was in this trial. We saw shrinkage of my cancer burden and until a couple weeks ago, stable scans.  I am also beyond grateful for the amazing professionals I’ve met through this trial. Your expert care and friendship has been instrumental in the treatment’s success and I recognize you for the angels you are.  So what’s next?  My spectacular oncology team has already set into motion next steps. I’m feeling good and in a good place to try another treatment and so I will. I’ll share more when the i’s are dotted and the t’s are crossed.

We had an interesting discussion at our last lung cancer support group meeting.  When is enough, enough? We often find ourselves moving in starts and stops from a hypothetical question to one that can become all too real. Quality of life and balance become catch phrases as we maneuver through our unique uncharted territories. We all do this our own way, in our own time and there are no right or wrong answers. 

Before I was diagnosed, I remember making the statement that if I was ever diagnosed with stage 4 cancer and my only option was chemotherapy, I wouldn’t do it. It was easy to make this statement then, I never believed I’d ever have to make that choice.  Let it be said that there are innumerable shades of gray in the black and white lines we draw in shifting sands. I have a unique perspective from where I sit, watching the lines continuing to blur in and out while contemplating my seventh line of treatment. 

And so here we are. I welcome the continuing adventure and will do my best to meet it head on with authenticity and of course – Love.

A Slow Moving Train

11/13/2021

We can see it coming down the track, rumbling slowly, very slowly, lights on, announcing its progress with a distant whistle.  We heard the whistle and felt the rumbling last week. The study drug has done exactly what we had hoped it would do for the past fourteen months and officially, my watched clinical trial lesions are still considered stable. However, the past two scans have shown slight changes in the pleura and lower lobe of my right lung. It’s unclear if these lung changes mean progression but there is reason for concern. On a good note, the slowness of this train means that my brilliant care team has the luxury of time to put together best options to discuss for next steps without it being a fire drill. I had a thoracentesis to drain a small amount of fluid a few weeks ago and we are hoping the information gained will help us with decision making. I’m scheduled to get study drug infusion #22 next week and another scan in early December. Dr. Patil gets credit for the slow moving train metaphor. It seems appropriate for this lumbering locomotive. We will know more in the next few weeks.

I was asked recently how I have dealt with the need to change treatments because of progression over the past five years. I had to stop and think carefully about my answer. Currently, I am on my sixth line of treatment and it hasn’t gotten easier. In fact, with each treatment change I experience increasing trepidation and fear. I have to wrap my head around once again, subjecting my body to another assault, all in the hopes of extending my life.  What is and has been true for me is that my spiritual foundation gives me the strength to keep going, this and my family and friends. These past five years have highlighted for me that there is only so much I can control. The true test is in letting go.  Not letting go as in giving up, letting go as in trusting that there is a plan. It is an evolving process and some days I’m really good at living in this truth, some days – not good at all.

I would be remiss if I didn’t mention that November is Lung Cancer Awareness Month. For the past five years I have shared my story, raised monies for research, participated in awareness campaigns, done interviews, sat on councils and boards and shared with whomever was listening the overwhelming statistics. I don’t say this seeking validation or kudos, I truly hope that adding my voice to the many others who advocate has helped make a difference in advancing research as well as continuing to bring awareness to this stigmatized disease. There is still more to do.

With each passing day I am reminded that becoming grandparents has been a profound blessing. Benjamin is crawling and will soon be walking.  He has a determination mixed with old soul knowingness that is a joy to behold. Would I have been this much in awe of this small being without a cancer diagnosis? I won’t ever know. What I do know is that I will never let this sweetness go unnoticed.  

I hope that the sweetness in your life is as plentiful as it is in mine.

MILESTONES

7/19/21

It’s been five years since the pain I experienced while taking a deep breath took me to the ER which led to a stage 4 non-small cell lung cancer diagnosis. Five years of chemotherapy treatments. Five years of hair loss and hair gain. Five years of weight loss and weight gain. Five years of saying hello, we are on this path together and goodby, it is an honor to know you – see you on the other side. Five years of devastatingly painful losses and still, five years of encouraging gains. During this five years we’ve maneuvered through a pandemic. Didn’t see that one coming but didn’t see cancer coming either so there’s that. Most importantly, five years of experiencing profound love and five years of living in the moment.

Five years is a significant benchmark in lung cancer speak.  With the advent of targeted therapies and immunotherapies, the five year survival rate has increased and for this we can thank our researchers because research matters and research along with exceptional care from so many has been instrumental in extending my life. This along with the multitudes of prayers, good wishes, good energy, good friends, good family and good luck.

I am eternally grateful.

Another milestone – forty years since my knight and I exchanged rings and I do’s. We have definitely tested the “for better or for worse, in sickness and in health” portion of our vows. We’ve been in step and at times out of step with each other over the years, hands clasped, daring threatening obstacles to pull us apart. The learning and loving has never stopped, my love, no matter the years, no matter the obstacles. And again I say, how lucky am I to be riding the waves with you my strong and sensitive knight.

Grammy update: Ben is growing strong and is an absolute delight. We take every opportunity we are given to spend as much time with him and his parents as possible. He has discovered and is enthralled with his voice and just like his Mom at this age, is perfecting his whistle register. Rocky the dog is having a very difficult time with the pitch and volume but Ben is beyond thrilled with his new ability and practices often. The way that he forms his small mouth and directs his breath up into his head space before he “sings” is remarkable. We can remember our daughter singing herself to sleep at night and we are told that Ben is doing the same. I know that his momma sings to him with her beautiful voice as well and my heart is content. May music feed his soul as it has fed mine.

Trial update: Latest scans remain stable.  WHOOP!  My sixteenth treatment of DS-8201a was this past Thursday which happened to be the same day The White Ribbon Project (#TheWRP4LC) presented a white ribbon to Dr. Richard Schulick, Director of the Colorado University Cancer Care Clinic. It was my honor to be asked to coordinate the presentation with CU.  Dr. Ross Camidge and Dr. Tejas Patil, my oncologists, along with Josh Saginaw, RN, my clinical trials coordinator and a slew of coordinators, nurses, researchers, survivors, caregivers and advocates gave their time and showed their support. It can’t be underestimated the impact gained when the medical community joins with survivors and advocates shining a light on the fact that anyone can get lung cancer. Together, we challenge the stigma surrounding lung cancer and shine a light on the need for fair funding and continued lung cancer research.

My treatment side effects are somewhat unpredictable in their severity. Mostly I deal with nausea and fatigue for the first week or so after treatment and this I can handle with the help of acupuncture, IV fluids, anti-nausea meds and rest.

More support for www.thewhiteribbonproject.org came from SkyRidge Medical Center where two and one-half years ago I received five rounds of SBRT (stereotactic body radiation therapy).  Dr. Mark Edson gathered his staff of familiar faces and with “Varian” in the background we took a few pictures.  My friend Heidi, whom Dr. Edson also treated, and her husband Pierre invited us to attend the spur of the moment photo opportunity and other than some radiation treatment PTSD which Heidi and I shared, it was great to see these exceptional and caring professionals again.

Who knows what the five year survival percentage will be; in five more years. I have very high hopes that we will continue to break barriers and reach well beyond the current five year survival rate which for me and others diagnosed with stage four lung cancer, is – 7%. (American Cancer Society)

Milestones. Time to set some new ones.

p.s. www.surviveit.org update: We are expanding our navigation tool to include colon and pancreatic cancers! Thank you for your donations during Giving Week which has made this possible.

Rainy Days and Mondays

May 3, 2021

It seems unusual for those of us in Denver to have two days of rain in a row.  Overcast skies, consistent drizzle, rarely used umbrellas under the pile of equally rarely used rain gear dug out and put to use.  I remember when I was a kid spending weekends and sometimes weeks in the mountains that surrounded our valley home.  Every afternoon we could count on rain in the mountains, every single afternoon. Our sneakers got wet, our rain ponchos were seldom dry. Today, I’m watching the rain wash away the dust and grime that has settled on the trees and bushes surrounding our home.  Watching tulips emerge from the damp and yielding soil and the trees as they begin pushing their leaves, searching for the sunshine soon to follow is breathtaking.

My latest scans remain stable with more slight reduction in the watched tumors.  We are all very happy with the results the clinical trial drug is producing and hope that I can stay with this treatment for many, many more months.  The side effects remain the same; days of nausea and fatigue followed by days feeling good with varying degrees of both. Each time can be different. I’ll be getting scans again next week along with my every twelve week echocardiogram followed by lucky treatment number thirteen. This will make eight months on DS8201a, a combination of drugs targeting the HER2 receptors on my cancer cells while linking and delivering a chemotherapy drug.

In other news, I’ve been excited about my fellow lung cancer survivor friend Heidi and her husband Pierre’s labor of love, “The White Ribbon Project”.  If you’ve been by my house, you will see a large white ribbon on our front door.  Heidi and Pierre started making these last year for Lung Cancer Awareness Month and very generously delivered them to nearby friends living with lung cancer.  They have now made and delivered hundreds through out the US and it has become an amazing grass roots movement with survivors, caregivers, major cancer centers and oncology teams supporting their efforts.  What’s so special about these white ribbons?  They are a tangible symbol for changing the public perception of lung cancer while raising awareness that anyone with lungs can get lung cancer. You can follow them at #thewhiteribbonproject.

I’ll also be sharing in a later post SURVIVEiT’s latest news and our fundraising efforts for 2021. http://www.surviveit.org.

And finally, I wanted to share with you that our baby grandson is doing GREAT!  He was in the NICU at University Hospital for four weeks, was released to go home with supplemental oxygen and is now thriving without the supplemental support.  He’s growing and showing off his well earned baby rolls and his parents are trying to find time to sleep as this little one likes to keep his sleep schedule a guessing game. Jim and I were able to help out for a week in April and I see many road trips back and forth in our future. Thanks to all who sent messages and prayers throughout his NICU stay. 

Here’s my favorite picture to date of Grammy and Ben. I’m in love…

Over The Moon

February 19,2021

There are dry spells and then life picks up speed.  These past couple of weeks, life has picked up speed… lots of speed. Good speed with good news interspersed with periods of waiting. Waiting for our turn to come around for the Covid19 vaccine. In most States, cancer patients have been delegated to lower phases.  Here is a guest post I wrote for SURVIVEiT about just this issue. 

COVID-19 Vaccines, Cancer & Priorities

Trying to get our Colorado Governor’s attention has been, shall we say, somewhat challenging. Patients and advocates have resorted to social media, media and print to do what we can. We aren’t interested in pushing anyone out of line. Our schools need to get opened and our economy back on track.  We are only trying to draw attention to the very real fact that cancer patients, especially lung cancer patients are at a much higher risk for hospitalization and mortality if we do get the virus. This also adds additional burden to our medical facilities. 

Next up on the speed dial is that my last two scans, which are interspersed 6 weeks apart, continue to show stable disease. This is good. I received clinical trial (DS8201a) cycle #9 Thursday and am still dealing with the after affects of steroids, first from pre-meds for the scan on Tuesday and again pre-treatment.  I’m hoping/praying/wishing to be able to sleep tonight. My side effects are becoming somewhat more manageable with anti nausea meds, acupuncture and a new approved supplement. My first ten days are somewhat blah with fatigue/nausea and the last ten to eleven days are much, much better. I am losing my hair again, just holding off shaving it until I can’t deal with the comb-overs and thinning. Third time’s a charm, I got this.

Now for the really, really good news– our first grandchild was born on Wednesday, 2/10/21 !  Early, just 33 weeks, and will be spending his first few weeks of life in the NICU at University Hospital. Our daughter was airlifted down from their home in the mountains while our son-in-law drove at a semi-acceptable speed and got to the delivery room just in time for the final two pushes.  Benjamin Lee was born at 1:49 am, 4 lbs 10.2 ozs and is a champ. He has been taken off the CPAP which was helping him breathe and is now on occasional supplemental oxygen. He’s still figuring out how to nurse while breathing and swallowing at the same time so he has a feeding tube to help him get the nourishment he needs. It’s a lot to throw at a little one from the get go. His parents are doing well, settling into the NICU alternative reality and spending most of their days and evenings hanging out with Ben. We won’t get to hold him until he is released which could be several more weeks, but we get daily pictures and his parents are staying in our lower level so we get personal updates for which we are grateful for. Having them here has been good for all of us in so many ways that it’s hard to describe effectively with words. 

Blessed, exceedingly, over the moon blessed.

2/10/21

First day off CPAP!

2/19/21

Rounding the Circle

November 30, 2020

The shining sun I am seeing is in sharp contrast to the nausea I feel as I watch a construction crane out the window of my infusion cubicle.  Today I am getting a liter of fluids and a bit of steroids to help with the nausea that is presently persistent but which does ease the farther out from treatment I get. The red arm of the crane is swinging too and fro, the bucket it is transporting disappearing from view as it reaches the roof of the hospital building in the distance. There is work going on and I’m enjoying the show and hopeful in the metaphor of some normalcy.

My scans on the 20th showed stable disease. Some decreases in tumor size were noted, some stayed the same, one perhaps a bit larger but perhaps unclear. A solid stable and we like stable, it means the drugs are working.  I can tell the drugs are working as I feel less discomfort, albeit the side effects of nausea have been challenging. On a good note, we did find a drug that is working on the vomiting. I hate throwing up as nothing makes me feel more sick than running to the bathroom to empty my stomach of it’s last meal. 

Treatment last Tuesday and Turkey for two on Thursday with our favorite trimmings followed by a dessert exchange with the neighbors was the highlight of our week. We met on the sidewalk and exchanged pie and cake, wished each other a distanced Happy Thanksgiving, our eyes and voices doing their best to express our feelings. We then returned to our twosomes and ZOOM’s and FaceTime’s with family filling in the loneliness gaps. 

In contemplating what I am thankful for this year, I found myself stuck. Ever the optimist, I was struck by the friends and loved ones we lost this year and wondering how I could spin the losses. I will miss Liz and her bigger than life personality and love of laughter, shopping and family. The hole she has left in our lives is very-very deep. I will miss Marly and her sweet countenance. I wish we could have spent more time together. I will miss Rebecca’s quick, sharp and brilliant wit. I find myself giggling remembering the swiftness of her retorts but I will miss her devoted friendship the most. I will miss Carol and her optimism and friendship over the past many years. She gave life her all, well done my friend. I will miss Patti and her exemplary example of fortitude and drive second only to her endless empathy. I will miss Bob and his love and support, his music and the gifts he blessed us all with. I’m beyond grateful to have the tangible examples of your master guitar and musicianship represented in recordings, videos and photos. Thank you for including me in the magic.

I miss them all. Every one of these dear one’s died this year from cancer except for one and their passings have left a depth of sadness. But I am also so very grateful for the time I was gifted with them.  We laughed, we cried, we played, we shared our joys and our sorrows. We created music and we created beautiful memories.

A Gift 

There is a balm that has eased the sometimes overwhelming loneliness and sadness of this year. We are going to be grandparents and our joy knows no bounds. Our daughter and son-in-law will be expanding their twosome to include one beautiful and loved being in the Spring. We couldn’t be more thrilled or more cognizant of the circle that is life. As we say farewell, we also say hello. The whispers of those who have moved on are ever present in our hearts and shared experiences and the joy of welcoming a little one into the circle is profoundly poignant. 

Around and around we go.

BIG MAC ATTACK

September 9, 2020

“Two all beef patties special sauce lettuce cheese pickles onions on a sesame seed bun.”

I pretty much adhere to a plant based diet.  Fish and chicken will find their way onto my plate for additional protein which I must stay aware of as it tends to drop easily according to my bloodwork.  But red meat appears rarely on my menu. I don’t have a problem making it for my knight in shining armor and I don’t have a problem saying no to the aroma or the flavor. Drive through fast food however occurs only when there are no other options and I try very hard to make sure there are other options. Imagine my surprise when I had a craving, and I mean a CRAVING yesterday for a Big Mac, a dietary delight I haven’t ingested in over thirty years. The experience was delightful even if I only ate half of it.  I’ve decided it’s all about the special sauce which squishes into the melted cheese on the hamburger patty which squishes onto the sesame seed bun with just a hint of pickle.  Suffice it to say that my craving was well rewarded.

I passed all the pre-screening tests for clinical trial DS-8201a and on September 1, I received my first dose. For those in the Lung Cancer community, you can refer to the DESTINY-Lung01 interim results that were presented at ASCO 2020, pretty exciting findings for those with HER2 metastatic NSCLC. No pre-meds are given with the first dose which runs for ninety minutes followed by a blood draw and then three to five hours later, a final blood draw.  Blood is held in high esteem as eleven tubes were drawn before the excitement could begin and I found myself wishing for a glass of orange juice and a cookie as I left the lab to proceed with my ten hour day.  I left tired but encouraged as I didn’t experience any infusion reactions and other than the long day, all went well. 

 Dr. Tejas Patil is my oncologist for this trial. He is quite brilliant and I am not shy in asking him questions which he spends time answering and explaining with hand drawn pictures and study printouts he shares with me. Oh yes, we are getting along famously. I’m also happy to report that Candice (PA), Nikki (trial coordinator) and Dana (Dr. Camidge’s nurse) are following me with this trial as well so there is needed and appreciated consistency and concerted care.

On day two I noticed some nausea and fatigue, and with each subsequent day the nausea and fatigue increased until I was having a very difficult time eating, drinking and staying awake.  I tried all my magic; acupuncture, ginger, more ginger, THC and eventually Compazine which barely took the edge off.  Yesterday, five pounds down and fairly miserable, I had an appointment for more bloodwork and a quick appointment with Candice who ordered a liter of IV fluids, dex and Kytril (antiemetic) and on the way home, the CRAVING hit with a vengeance.  

“Honey, I need a Big Mac!”

“You’re kidding???”

“NOPE! Like I really need one!”

I could barely get home before I opened the bag.

I can go back for more IV fluids if needed and I have an Rx for Kytril which I took again this morning.  The nausea is low grade right now and is a very common side effect of this drug. Everyone responds differently but the info on the patient sites for this drug are full of antidotes and stories, I am in good company and far from unusual.  I’m not sure if Big Mac’s will be added on a regular basis, I might branch out to an occasional Whopper or Bud’s has a pretty spectacular burger I’m told.

  Let’s just say, nothing is off the table.

For your throwback viewing pleasure 🙂

https://www.youtube.com/watch?v=dK2qBbDn5W0

P.S. –  SURVIVEiT fundraising update:

The Indiegogo and private donation campaign was a great success!  Over $41,477.00 to date to help launch the Cancer COPiLOT.  If you would still like to make a donation, you can visit our website: www.surviveit.org.

I was also asked to write a guest blog about my experience participating in a clinical trial during the pandemic.  Here is the link: https://www.surviveit.org/newsroom/bending-without-breaking-cancer-covid-19-navigating-now/

Finding Feelings

August 14, 2020

As I walked into the Cancer Care Clinic on Wednesday, I was pondering the last six months.  It seems forever ago that I had laparoscopic surgery to get good biopsy material for clinical trial testing. That was the end of February, pre Covid chaos as we now know.  A couple of weeks later and I’m not sure that this surgery would have been considered necessary.  To say that the last six months have been a walk in the park would be ridiculous.  It’s been hard, some days really hard.  Floating in and out and through these hard moments there have been mega doses of joy and love and gratitude. Let me focus on what’s important because the other stuff, the hard stuff while very real and must be acknowledged, is draining and I need more energy right now, not less.

Wednesday would have been my fifteenth infusion of the RAIN 701 clinical trial drug. CT scans were performed on Monday and I got a heads up on what they revealed; progression in my abdomen. My lung remains stable but because of worsening progression and worsening side effects, I’m out of the trial. That’s the hard news. The good news is that a couple of weeks ago, my UC team sent in a frozen tissue sample from the February biopsy to be tested for a different clinical trial taking place at UC. I received news yesterday that I qualified for pre screening which means that I am starting the clinical trial process over again. There will be more labs, and scans and potentially another biopsy to begin next week.

How do I feel about this? 

The RAIN trial proved challenging at times.  Going in for infusion every week was a new experience for me and most of the side effects were ones I hadn’t experienced before.  The best part of the every week experience was really getting to know my UC team.  They have been most extraordinary. Truly. I feel very good about this. 

However, another drug, my sixth line of therapy feels daunting. Why another clinical trial? Because dear reader, clinical trials are where the excitement is. This is the arena where ground breaking discoveries are being made.  According to a new article from STAT, (https://www.statnews.com/2020/08/13/lung-cancer-deaths-declining-faster-than-new-cases-due-to-advances-in-treatment/ ) we are making a significant dent in longer survivorship for lung cancer patients, something that was only a dream a few years ago and why I advocate for lung cancer research and participate in clinical trials.

If for some reason I don’t pass the pre screening I will be returning to my SNMWO at Kaiser. I’ve missed seeing him but we have kept in contact and I know that he is only a phone call or an email away if I need his support, advice and care.  

In other news, because life hasn’t stopped regardless of Covid and cancer, my Mom had a stroke a few weeks ago.  The hardest part for me is not being with her, my Dad and my family.  She has made exceptional strides but still has a ways to go. My sisters and extended family are doing a heroic job of making sure my parents are being taken care of and I am blessed to have such a loving and large family, but it wouldn’t be honest if I didn’t say that I am feeling quite helpless.

No, this has not been an easy six months but as my Dad is prone to say, “I woke up this morning and I’m standing on top the grass and looking up at the sky. God is good”. 

Stable

July 1, 2020

Cancer Terminology

Progression –  Means the cancer is spreading. This can be in the same area(s) seen at diagnosis or spread to other areas; i.e., organs, bones, brain, etc.

Remission – can be partial or complete. The cancer is shrinking.

Stable – the cancer hasn’t grown or shrunk, the disease in effect, has not changed.

NED – No Evidence of Disease. Can be short-lived or long-lived. If you remain NED for 5 years, you’re considered cured.

Mixed Response –  Some tumors have responded to treatment and others have not.  This can mean many things and is complex when it comes to treatment choices. 

The consensus from my latest scan is my disease is stable with one caveat, the two nodules my docs targeted for measurements each show a slight decrease in size.  While we were hoping for significant improvement I’ll happily take stable. Now what? Eight more weeks of treatment with tumor markers* checked in mid July and another followup CT scan in mid August. As long as I don’t have any new or worsening symptoms before then, and if markers and scans either remain stable or show improvement, I stay on trial unless side effects dictate otherwise.

That’s the down and dirty.  Going in for treatment every week does get old.  It’s a seven hour day between labs, EKG, care team appointment, pre-meds, infusion, followup vitals and another EKG. Side effects haven’t been too bad.  The initial rash, dry skin, fatigue, abdominal discomfort and diarrhea have improved and in the grand scheme of things, this is doable. 

In keeping with our new world of constant updates, UCHealth docs believe that what is driving my cancer is an EGFR ERBB4 fusion not a mutation. From a novel perspective, this EGFR ERBB4 fusion is a 10 on the 0-10 scale for novel. What this also means is that we have no roadmap.  I’m “Patient Zero”, either outstandingly unique or extremely unlucky. I’m going with outstandingly unique, mainly because I’m more of a glass-half-full type and extremely unlucky is just too negative and doesn’t fit with my “what you focus on expands” way of thinking. My daughter probably summed it up best; “Well Mom, conformity really isn’t your thing.” Not to fear, this could also suggest that new/old targeted treatments are back on the table and believe me, it’s good to still have options.

In other news, recently I joined with seven other Colorado lung cancer survivors and patient advocates sharing our stories, educating and pressing our elected officials to reinstate federal funds for lung cancer research at the 2008 level of $20 million dollars.  Currently, lung cancer is funded at $14 million, far-far too low for the cancer with the highest mortality rate in the world and $6 million less than was allocated in 2008. GO2 Foundation coordinated meetings with the offices of our US House Representatives and Senators with over 200 lung cancer survivors and advocates participating.  It was a memorable experience and I was glad to do my part.

Last week was also Turquoise Takeover sponsored by The American Lung Association – LUNG FORCE.  Myself and five other Colorado survivors shared stories and experiences which you can find on the American Lung Association Colorado FaceBook Page.

Also last week, Foundation Medicine re-mixed a previously recorded video with members of the Patient Community Council to celebrate Survivor Week. The link at the bottom of the page will take you to my Twitter feed if you would like to watch the video.

And lastly, July 19 will be four years to the day that I discovered I had something growing in my right lung.  Four years is significant in the stage four lung cancer world. Four years ago, we were talking about some day being able to treat lung cancer like a chronic disease instead of a terminal one. Today, we can say that within the last two years, more treatments have been approved by the FDA for the treatment of lung cancer than had been approved in the previous ten years! Yes, we are getting closer and we still have a long way to go.

The last four years have also revealed to me in ways previously unfathomable that resiliency, the ability to bend without breaking, holds within it’s sway a universe of boundless potential. I visualize my roots seeking the deep rich earth, creating the stability needed to counterbalance my ever swaying world above ground. My limbs are supple, my trunk is strong. My family, friends, medicine and magic have seen me through the past four years and I am resiliently stable, how about that for a dichotomy! I am also…eternally grateful.

It’s Raining, It’s Pouring

May 1, 2020

The RAIN 701 (Cohort C) phase 2 clinical trial at UCHealth is a GO.  I had all the tests; full body CT, chest CT, brain MRI, bone scans and labs to determine that I met all of the qualifications.  I am grateful beyond words that I have been included.  I’m also seeing how I have interwoven my interpretation of “failure” with the construct of control or the lack thereof.   Which once again bodes the question, “What is failure and how can one possibly fail at life and death?” This seems to be a theme for me.

I didn’t realize how unsettling this process can be.  This is evidence based medicine and there are rules to be followed.  The results must be measurable, meet the standards for replication and the rules complied with. The rules are stringent as this is where medical science meets a human being, a real living breathing person.  When my Dad worked in the lab for American Gilsonite and Standard Oil, he worked in the scientific sphere and I could grasp with my child’s understanding a tiny bit of what he found fascinating about chemistry. But my experiences have taught me that the Universe is fluid, constantly in flux, ever changing, ever morphing and there is a science to this as well.  I am mesmerized by the in-between but the fact remains that when conducting scientific medical trials, there are rules that govern outcomes.  

To throw fuel on the fire, Covid-19 has determined that everyone is now living with new rules. The rules at the medical center are strict.  Masks must be worn and unless you need someone to help you walk, only patients are admitted into the cancer center, at least for now.  

I didn’t have my person with me yesterday.  I didn’t have him with me last week when I experienced an infusion reaction during my first dose and ended up spending the night and most of the following day at University Hospital under observation. Cancer is hard to do alone on a good day and in the era of Covid-19, it can feel like even the good days take on a flavor of unfairness and heightened fear of the unknown. This is difficult for both of us. Jim has been with me for every appointment, scan, and infusion.  The disappointment and fear showed loud and clear in our eyes peaking above our masks as he dropped me at the door, spending his day waiting for phone updates. We are dealing with this new reality but it’s not been easy. I miss his steady presence, his watchful eyes and his comforting love beside me as I allow a study drug to drip into my veins.

My infusions are once per week and that day is extremely long.  I start the day with labs followed by waiting for the results.  This drug lowers potassium and so I take daily supplements and get my levels checked every week.  Next is a check in with my care team for symptom updates and a hands on once over followed by an EKG.  If everything checks out, I move to the infusion room for pre-meds followed by the study drug which runs for 90 minutes.  Then the waiting continues with EKG’s every hour for four hours to monitor any QT prolongation (interruption in heart rhythm) along with vitals.  Because of the infusion reaction from the first dose, we doubled my pre-meds, added another med and increased the duration.  It seems to have done the trick and 10 hours after Jim dropped me off he picked me up. I am impressed with everyone at UCHealth Cancer Center.  They have taken exceptional care with me and are as committed as I am to making sure I have the best outcome possible.  Scans will be done after 8 weeks to see how well the study drug is working.

During my waiting to qualify period, I decided to make cloth masks from fabric I have refused to part with. This box-o-fabric has moved with us to every new house for the past 35 years. Out came the sewing machine and I was reunited with my sewing table making retro fabric masks from the early 80’s and beyond. This has been a great escape and I think I’ve made close to 60 masks. Wearing a mask used to be for Halloween or bank heists, now you can’t go anywhere without one. What can be learned about our fellows by only looking into their eyes? It’s been said that the eyes are the windows to the soul. When we only have another’s eyes and body language to interpret what is being said, what do we see and hear? How comfortable are we with this intimate act? Better food for thought, how uncomfortable are we with either wearing a mask or looking at someone else with a mask? Do we hold the gaze or look away? I find that even eyes have masks that can attempt to hide what we are fearful of expressing. Eyes can also reveal the utter magic of a soul expressing itself in human form. Yes, this is a very intimate act.

And so fellow travelers, we continue to maneuver through our ever changing world. 

Stay safe, stay hopeful and stay loving.

Our New World

March 23, 2020

Surreal

sur·​re·​al | \ sə-ˈrē(-ə)l also -ˈrā-əl

Definition of surreal

: marked by the intense irrational reality of a dream

also : UNBELIEVABLE, FANTASTIC

*Merriam-Webster*

Trying times we find ourselves in. I’ve been working on my mental martial arts skills, rolling with the punches one could say. I wish this post could take on a broader, worldly “we can do this” tone but the wondering calls keep coming in and I must share my own personal update while knowing that we are all dealing with the surreal.

There could have been many updates I could have given since my surgery on February 27, but I was experiencing changes on a daily basis. The surgery itself went according to plan. Dr. S was able to take out the two largest tumors and neither was adhered to other organs so he was able to do what we set out to do laparoscopically.  I did so well that three hours after the surgery was completed, Jim and Lene brought me home.  There was one complication, however.  Most likely because of the antibiotics I needed to take for surgery, I developed an intestinal infection a week later.  The antibiotics destroyed all the good bacteria in my gut and the dangerous bacteria, that we all carry but normally are balanced with the good ones, led to the infection.  Not good at a time when there was a run on TP and cleaning products. Two weeks on a different drug and I am seemingly cured and repopulating with probiotics.  

There is good news as well. The research team at UCHealth was able to pick up a tissue sample and start a cell line, third time’s a charm. There was also more not so good news. I found out last week that I am not eligible for the two ADC clinical trials we were testing for. The specific proteins found on the surface of the cancer cells they were looking for fell below the 10% threshold.  Even if I was eligible, I was told that University is not screening new patients for trials because of the risks involved with COVID-19.  Double whammy.  

So now what?  Remember last year when I was hoping that a new cohort would open for an EGFR/PanHer trial?  On Tuesday, SNMWO messaged me to say that the next phase of the trial had been approved and my EGFR/ERBB4 fusion had been included. The best news I’ve had in 8 months and I don’t have any idea if/when I can start treatment.  This treatment requires weekly infusions at a medical facility where if the predictions come true, could become overwhelmed with COVID-19 patients and I am in the “high risk” demographic.

This is what “high risk” cancers patients are faced with:

  • What’s worse, disease progression or your chance of getting COVID-19?
  • If a patient goes in for treatment, could they be exposed to the virus at a time when the treatment itself is compromising their immune system, leaving them even more susceptible? 
  • In terms of new treatments, can the docs ethically expose patients to potential known and unknown side effects, risking hospitalization for a bed and medical equipment that might not be available?
  • Could we really be looking at:  “All we can do is hope our cancer doesn’t kill us before COVID-19 is under control?”  Are we talking weeks? Months? Years? Many don’t have that kind of time.
  • The reality is that the chance of survival drastically decreases for immunocompromised and at risk patients who do get the virus.
  • And here’s the kicker, at risk patients could fall to the end of the line when it comes to receiving treatment in a worst case scenario.  Choices might have to be made between them and someone who has a potentially better chance of survival. I truly hope it won’t come to this but the conversation is absolutely taking place.

Don’t believe me? 

https://www.forbes.com/sites/miriamknoll/2020/03/20/the-one-two-punch-cancer-and-coronavirus/?fbclid=IwAR3dyKSbQoNzPZwuSe9uf2AiPQiuobCTkEhLpBsiqvLfb4og7tq_-GY1SSg#3c4b5b8d58e6

I listened in on the web conference round table  mentioned in this article and it was sobering.

And from  © 2020 JNCCN—Journal of the National Comprehensive Cancer Network

…Ethical Considerations – “Beyond the care of the individual patient, oncology clinicians will face the heavy reality of rationing care. As the pandemic progresses, there will come a point when channeling a large amount of resources for an individual patient will be in direct conflict with the greater social  good.”…

I can’t get COVID-19, not now, not ever, so I’m isolating. Jim and Tess are the only ones I am in physical contact with. I no longer walk with my friends, but I am still walking. We wave at each other through open windows and utilize conference calls on ZOOM. I don’t go to the grocery store, my knight in shining armor has been but I’m strongly considering home delivery. We don’t do take out but we do take rides in the car. There is a spray bottle of bleach that lives on the kitchen counter and in the bathrooms, the house smells. Our hands are raw from washing but they are clean.  All this so that we can say we did everything we could to get me to the time when I can start the new treatment because life is still good, even with our current reality. In lieu of coffee dates, lunches and hugs, I’m spending lots of time emailing, texting and talking on the phone. I’m thrilled that the weather is warming up and I can be outside grounding myself in the garden. I try not to focus on the fact that the cancer could be growing. The surgery took care of our biggest emergency fears and my last PET/CT scan was “unimpressive” according to Dr. Camidge and unimpressive is good. I’m using all the tools in my self healing tool box, even the ones that I’ve shelved for the past 44 months. My years of study and practice in complementary medicine, which I have used alongside my medical treatment, give me a measure of continuity.

Jim continues to deal with the incredible and at times, overwhelming responsibility and believe me, I know that I am incredibly blessed by his love and devotion.  My prayers and good wishes go out to all of you for we are all connected in the grand scheme of things.  The interwoven Universal web reminds us that what we focus on – expands.  Let’s all do our utmost to envision the world we want, because the world we had will never be the same. We have an opportunity, let’s make the most of it.

Stay well.

WELL POO!

February 26, 2020

Moving quickly into TMI so if you are easily offended or have a weak stomach you might want to wait for a later post, just sayin’. My surgery is set for 10:00 tomorrow morning. Dr. S did a great job of telling us what to expect with this surgery but he left out one teeny tiny, little detail…four hour bowel prep the day before. Did the look of horror just cross your face like it did mine when I got the call from his nurse that I was to come and pick up a gallon jug of GAVILYTE and two antibiotic prescriptions? Now of course this makes perfect sense, he’s going to be probing my abdomen with sharp objects so let’s take all precautions. There’s also the slim possibility that he might need to do a bowel resection and we wouldn’t want any poo getting in the way. (I cringed even as I wrote that.)

If like me you followed your doctors orders and had your first colonoscopy at age 50, you should have already experienced this mature adulthood initiation. If you haven’t already, let me just say that GAVILYTE tastes better now than the ocean water they made you drink ten years ago. Here’s a few suggestions to help you through just in case you’re looking for ways to make the experience less shitty…pun intended.

Things I should have learned the first time around:

  1. ELASTIC!  Buttons, zippers or string ties should be strictly avoided.
  2. No slippery socks.  You will be running.
  3. Multiple hand towels. Good hygiene demands clean hands. You will be washing A LOT.
  4. Use the moisturizing, smelly soap you got for your last birthday and were saving for a special occasion. This is that occasion.
  5. Don’t look in the mirror every time you wash your hands, it’s depressing.
  6. The laws regarding time no longer apply. These fifteen minute increments are NOT the fifteen minute increments of yesterday.
  7. Use the timer on your cell phone and don’t forget to push “start”.
  8. Put your dog in her kennel or outside or tell her to remain on her pillow. Definite tripping hazard. Running in this situation does not suggest playtime.
  9. Ask the nurse lots of questions while you have her on the phone pre prep. Left over Compazine for nausea was a great suggestion. It also handles a sudden headache or schizophrenic episode.
  10. Warm clothing.  Drinking a gallon of cold liquid this quickly can drop your body temperature.  You wouldn’t want to be shaking so badly that you spill any GAVOLYTE.
  11. Yes, you still must drink liquids in between. It compounds the absurdity of the situation.
  12. Do not close the toilet lid. Seconds matter.
  13. Your nose will run. Buy kleenex.
  14. That stupid Charmin commercial with the dancing bears will haunt you when you realize you didn’t buy “pillow soft”.
  15. You might as well spend the last hour of this bad dream in the bathroom on the throne. Forget about running to and from to get your steps in on your FitBit.
  16. Dab don’t wipe. 
  17. Finally, even though what’s coming out is the same color as what’s going in…yes, you must finish the entire gallon.

Some posts take me just a few minutes to write, some take days.  This one took me exactly four hours. Done in real time, a new bullet point emerging as I sprinted to the bathroom and then back to my protected laptop. But hey, there’s still plenty of time left in the day to do laundry and drink clear liquids!  Are we having fun yet?

I would be extremely grateful for your positive thoughts and prayers for a good outcome tomorrow.

The Words We Use

February 10, 2020

After the words came out of my mouth I wondered why I said it that way.  “What about the uterus? If you find cancer there, can’t you just take the whole thing out?”  Like it’s someone else’s uterus, not the one that housed my daughter for 9 months or the one that cycled with the moon like clockwork for most of my life. While talking with the surgeon today I used words like “THE bowel, not MY bowel…THE tumors, not MY tumors…THE uterus, not MY uterus”.

I was distancing. Seemingly, it was easier to think that these were someone else’s organs, someone else’s tumors rather than the organs that I was born with or the tumors that are calling my body home. There is safety with distancing. It allowed me to discuss with a degree of understanding the anatomy we were talking about. It also allowed me to assure Dr. S that yes, I am quite aware of what stage four means without blame or fanciful expectation. Once I got home though and sat with the information we had just received, it became abundantly clear; everyone today was talking about MY body. The risks and the rewards would fall squarely in my lap, quite literally.

It was a good consult. We wanted to see if a laparoscopic approach would yield a better tissue sample for clinical trial testing as well as getting a good sampling for developing a cell line. Jim and I heard much more than what we bargained for and our conversation on the ride home was sparse as we were both deep in our own thoughts. Dr. S is on board to do the surgery but we did get an education on the realities. Please refer to your Grey’s Anatomy episodes for visual reference, there’s a LOT going on in there. Many of you have asked “why can’t they just take the tumors out?” They can but only if they can get to them and only if my tumors are not adhered to other organs.

We all have about five feet of large intestine perfectly coiled inside our lower abdomens. Inside of my pelvis (and yours if you are female and still have all your parts) I also have two ovaries, one uterus, and a bladder.  In addition, all of us have abdominal muscles, various tubes, arteries, veins and other necessities for sustaining life. In a perfect world, Dr. S will be able to remove both of the tumors we can see from the scans. In case he can’t fully excise the tumors, he will try and get a larger sample than we have been able to get in the past.  Just to be clear, this is not a “curative” surgery but it could be a “pre-emptive” surgery to head off a potential bowel blockage emergency. If he can’t get to the tumors with the laparoscope, or if the tumor(s) are adhered to the intestines, he might have to resort to an open approach.  Time spent in the hospital could be just that day or several, depending on how much he has to do.  

Believe it or not, this is the stripped down version of what we heard today. Veering towards the positive, this is a good time for this particular surgery.  Yes, it’s an aggressive move but after weighing the pro’s and con’s, all indications, soul searching and expert opinions point to this being the best next step.  As far as scheduling is concerned, Dr. S is trying to get me in as soon as possible. The stars and schedules (his and operating room availability) are working on aligning.

Getting back to MY uterus, Dr. S has no intention of removing it. It stays with me. 

Good News/Bad News Deja Vous

January 22, 2020

I’ve been here before.  It’s not a comfortable place to be, but it is familiar.  My PET/CT from November 27, confirmed that there was metabolic activity in the two nodules in my peritoneal cavity. These two areas didn’t appear to be aggressive but they still showed signs of growth.

We decided on Gemzar (Gemcitabine), an older drug reported to be a bit easier than the previous lines I have been on.  On December 3rd, Jim and I showed up in the infusion room and Joe hooked me up to the IV pump.  No need to pre medicate with antihistamines and steroids with this one, just a little Zofran for nausea.  Until my ears and throat started itching, that is.  It would seem that I’m one in like, hardly no one, who has a reaction to Gemzar.  Joe stopped the IV, administered Zyrtec and Dex and we waited.  I remained upright, breathing and conscious and the itching stopped so we slowed down the infusion rate and rallied on.

Let’s just say Gemzar wasn’t kind to me and I was glad that a scan was scheduled after four infusions to see if it was working.  That scan took place Friday, January 17 and good news/bad news, I won’t be getting Gemzar any longer.  The PET/CT showed continuing mild progression in the two nodules but the rest of me is doing just fine.  No cancer detected anywhere else.

Once again, SNMWO has reached out to Drs. Camidge and Doebele for their valued opinions but also because qualifying for a clinical trial at UC is still the goal. Now that the largest nodule measures almost two inches, the hope is that a new biopsy will deliver the viable tissue samples needed for accurate testing. We are also expanding our clinical trial arena to see what other trials might be worth looking into.

I wish the damn stuff would just go away. In the mean time I sit in a familiar space, living in a surreal amusement park where the roller coaster morphs into a gentle giant teeter-totter, then into a red whirling dervish, then to a beautiful and slow carousel only to find myself back on the roller coaster, and so on and so on.

Sounds a lot like living life doesn’t it? 

Reflections on Death

November 23, 2019

My Mother-in-Love died this week.  You might think that I made a mistake calling her my Mother-in-Love rather than Mother-in-law, but no, this is how we introduced each other,  Daughter-in-Love and Mother-in-Love.  Not right off the bat mind you. Her youngest son and I met and married young, very young, and I’m not so sure that everyone around us thought we would still be married 38+ years later.  This was evidenced by her attempting to fix him up with a lovely Greek girl shortly after we began dating. After we were married however, she embraced our love for each other and welcomed me into their family.

She was first generation Greek American. Her father emigrated as a young adult and settled in the Denver area where he worked making wheels for locomotives and later as a coal miner. Once he saved enough money, he wrote to his mother in their small village saying he had found a husband for his sister and also asked her to send him a wife.  Being adventurous young women in their late teens, the two crossed the oceans, arrived at Ellis Island and took a train to Denver to meet their future husbands. They did what so many emigrants have done before and since.  They found a way to hold on to their heritage while embracing the fact that they were creating for themselves, their children, grandchildren and great grandchildren, the American dream. 

My Mother-in-Love was beautiful and vivacious. The only girl and youngest of three, I’m told she was the apple of her Daddy’s eye.  She was a risk taking, fun loving, gracious, devout, demanding, giving, willful working woman, and she was a survivor.  After her first husband died at the age of 39, she found herself with five children to raise and support alone. She continued managing the business they had taken on together, finding it necessary to ask her mother for help with her children.  She remarried and gave birth to her sixth child a few years later while working many days from 5:00 am to 5:00 pm. She employed friends and family over the years, many whose first job was washing dishes, wiping tables, filling the coke machines and doing the next day’s food prep.  My husband learned how to run the cash register while standing on a stool at the tender age of 6 or 7.  It’s no secret where he gets his work ethic from.

She loved to cook, and was exceptional at it. Stories abound about her delicious Greek chicken, tiropitas, spanakopita, dolmathes, paximathia, baklava, rizogalo, and lamb with spaghetti. She was a strict teacher when it came to teaching others EXACTLY how she wanted Greek dishes prepared and it took a period of testing before she was willing to let me in on the secrets passed down from generations of Greek women. She was the Queen in every kitchen and I learned early on if they were coming to visit (which they did at least once or twice a year for sometimes a month at a time), I was to yield the kitchen and best of luck finding the pans, bowls, condiments and utensils that had been relocated to a “better” place because after all, it just made good sense. She did this not because she was trying to be difficult, but because that was just her way. I found this hard at times and our willful and strong woman ways could clash. This dance continued, her rearranging my space, me moving everything back when she left, until she could no longer manage the kitchen and this broke my heart. My memories of her teaching our daughter to make kourambiethes, dressed in matching aprons, flour and powdered sugar covering the counters and floor, laughing with sticky hands as they touched each others noses is unforgettable. As is Lene excitedly bursting through the door with purple fingers exclaiming that Yiayia showed her how to “pop the eyeballs” out of squid (being prepared for the Greek Festival) still makes me laugh.

My Mother-in-Love died eleven days before her 94th Birthday. She began taking medication for Alzheimers disease in 2005 and lived in memory care for the last five years of her life.  She never knew about my cancer diagnosis, she had already slipped too far away from the world she tried so desperately to hold on too. While I would have loved to unburden myself over a cup of coffee or a glass of wine, instead we simply held hands and that was enough. She had an uncanny way of knowing what one needed, maybe not wanted, but needed even before they did.

I spent several hours with her in the days before she passed and it was impossible not to wonder if this was what my own death would be like.  I know it sounds a bit morbid but as I’ve said before, the after death part doesn’t bother me, it’s the dying process that makes me a bit squeamish.  I try and balance these conflicting feelings by attempting to live in the moment and yet do what needs to be done to be prepared. I guess I could call myself a Mystic Realist, it seems to fit.

I’ve had the privilege to sit with a few people before their deaths and have experienced some incredible moments.  A special moment that stands out with her was when she looked out across the room and said, “Well, Hello!” as if a friend or loved one had just stopped by for a visit. Another poignant statement was, “I’m in between here and there.” At one point a look of wonderment appeared on her face and she said with almost palpable awe, “Isn’t that something!” as she gazed into a reality that only she could see.  There are those who will say that the brain does many things as it responds to a lack of oxygen and hallucinations often occur. However, I have spoken with several people working in Hospice who say that the dying process is a sacred honor that they are humbled to witness. Many come to believe that what is taking place is nothing less than supremely divine.  I choose to believe that she generously shared what generations and generations have experienced before and yes, I will too…death is simply a transition, but letting go is hard.

One of my favorite sayings is “May you receive a gentle landing.” I know she was welcomed with open arms as she crossed over from this world to return home. She deserves the softest of landings.

I will remember and cherish her strong yet callused hands, her quick laugh, her equally quick temper, her love of family, the sparkle in her eyes, her giving spirit and her gently flawed humanity.

Mother-in-Love, I am blessed to have known and loved you. 

May her memory be eternal.

At our wedding, in the kitchen, 1981


What Just Happened?

November 15, 2019

Tuesday at 6:31 pm, SNMWO called and said, “Is this a good time to talk?”  My heart picked up speed and my palms were sweaty as I sent a silent reminder to myself to breathe.  I had that feeling you get in the pit of your stomach when something big is about to be revealed. He was calling to tell me that he had heard from Dr. Camidge about my biopsy results.

The biopsy went well.  The Interventional Radiologists (the “s” because there were two) found their target and extracted samples which pathology deemed sufficient.  Two hours later, Jim and I were home making dinner.

Then we waited. For 12 days we waited.

I was expecting one of the clinical trial coordinators to call letting me know that yes, I was eligible for at least one of the ADC trials.  What I wasn’t expecting was SNMWO calling to say they didn’t find the necessary proteins being tested for because they couldn’t find cancer cells in any of the samples. 

Excuse me…WHAT? HOW? WHY?

Is this good news or bad news? GULP…

He assured me that the biopsy team was top notch of which I have no doubt. I was with them for over an hour as they talked me through what they were doing. At least I think that’s what was happening. I was under the influence of happy drugs and only pretending I was awake. I do know the point of the needle could be seen inside the mass as this was a CT guided procedure. Four core tumor samples were taken with an 18 gauge needle in the area of the tumor where activity was seen on the PET scans in June and again in September. So how could this be? I know that solid tumors consist of cancerous as well as non cancerous tissue which is why scans are so important in this kind of biopsy. One or maybe two negative findings would be easier to understand than four. SNMWO and I are perplexed. The upshot is I won’t be starting a clinical trial and it’s been three months since my last chemo infusion. So far this year, I’ve spent more time off of treatment than on… so who’s complaining.

The next step is a PET/CT on Nov. 25th.  I have a follow-up appointment with SNMWO on the 26th to go over results and potentially start another line of chemotherapy, depending on what the scans reveal. Future clinical trials aren’t out of the question but I’m pretty certain each would require yet again, another biopsy.  SNMWO said he didn’t want to make me into a human pincushion and I reminded him that I get acupuncture once a week so he has significant ground to cover to catch up. It makes me happy to hear him belly laugh.

Peering through my rose colored glasses, I’m choosing to believe this is good news. However, I would be ever so grateful for your prayers and good vibes.

*For reference: SNMWO = Super Ninja Most Wonderful Oncologist

PATIENCE GRASSHOPPER

October 28, 2019

I did see Dr. Camidge; aka Super Ninja Most Wonderful Oncologist’s mentor, Director of the Thoracic Oncology Clinical and Clinical Research Programs at CU and lung cancer oncologist extraordinaire, on October 8th at 3:30 p.m. He was just as we remembered from my second opinion appointment, especially his sense of humor. “Love what you’ve done with your hair,” he deadpanned followed by a quick smile as he walked into the room. We discussed three Antibody Drug Conjugate (ADC) clinical trials taking place at UC Cancer Center that I might be eligible for and I signed the paperwork as Jim and I met gazes from across the room.  Any of these three trials sound promising but to see if I qualify, I first need another biopsy to determine if a certain protein (different one for each trial) can be found on the surface of the cancer cells which have formed about a one inch egg shaped nodule on the left side of my abdomen.  Each of the three trial sponsors gets a sample of tissue along with another sample for Dr. Doebele to retry a live cell line. If there is any left, we store it in the bio bank.  I might have all three proteins in which case we choose the best trial for me or I might have none. In that case, most likely back to chemotherapy and wait for another promising trial to open.

“So, when can we schedule the biopsy and get this show on the road?”  I ask with wide-eyed optimism.

Exit doctors and enter clinical trial coordinators.

Patience Grasshopper.

Three weeks have crawled by with a wedding and birthdays to celebrate, a successful fundraiser for SURVIVEiT, and a CT scan last week because of some pretty intense chest and back pain. The good news is the radiologist, medical oncologist and radiation oncologist ruled out pulmonary embolism, pleural effusion and disease progression in the lungs, chest, or upper abdomen. What we think is causing this jaw clenching radiating pain is most likely chest wall nerve damage related to the SBRT I had in January. I’ve had to resort to the occasional pain meds which is new for me but this is a marathon, not a sprint and I’ve been pretty damn lucky so far.

Thursday, October 31, is Halloween and also the day my biopsy is scheduled for. Test results will take another 10-14 days. I’m taking suggestions for a costume to show up in and I will consider all except the grim reaper.  Glinda, the Good Witch of the North, complete with ginormous pink dress and bubble to float out in is a viable option, especially considering the drugs they will be giving me. 

Yep, I think pink dress, bubble and good witchery is definitely the best option.

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The Good, The Bad, And The Not So Ugly

While traveling down this road full of pitfalls and glorious heights you learn a lot. Like how to bite your tongue when you want to scream. Or suggesting that everything is a-ok when you really don’t know. Or offering hope to someone else when you’re having a difficult time finding it yourself. Then for the umpteenth time, coming full circle to: no matter what, I still win! You find that you never knew you could dig so deep within yourself discovering who you truly are. Discovering what is actually important to you, not to everyone else…to you. Discovering that everything you ever wanted you actually already have, have had it all along. 

Let me recap the past few weeks.  Two weeks ago, I went to Dallas to share my story with about 200 conference attendees at Foundation Medicine’s (FMI) fall meeting .  These passionate folks are committed to making sure that genomic sequencing testing gets to everyone who needs it while helping advance the science of cancer care.

( https://www.foundationmedicine.com) 

You’ve heard me talk about this before, my commitment and belief that everyone diagnosed with cancer should get Comprehensive Genomic Sequencing testing.  It’s the only way to know what is driving a patient’s cancer and assure that the patient and their doctors have the information needed to access the best medical options available. 

I was treated like a rock star even though I never sang a note. Jen, Sharon, Maggie and a host of others, attended to my every need while making me feel welcome and appreciated.  I experienced the excitement of being on stage again, telling my story and confirming that FMI is making a difference in peoples lives, including mine. Sharing coffee and danish with FMI’s CEO, Cindy Perettie, was a definite highlight. FMI is definitely in good hands with this woman at the helm in my humble opinion.  It was a wonderful few days and I am incredibly grateful to have had this experience and opportunity. 

I returned on September 13, Monday the 16th I had scans and the next day Jim and I met with Dr. Narayanan, aka; Super Ninja Most Wonderful Oncologist (SNMWO). The PET/CT showed that the nodule we were watching grew and there are new mini spots lighting up in my peritoneal cavity, that’s the bad news.  Here’s the good news, that’s the only place we are seeing it. 

So where do we go from here? I was hoping that an EGFR/PanHer trial we’ve been following would be available but it’s not open yet and the biopsy tissue I donated in June to grow a live cell line wasn’t successful, there weren’t enough cancer cells. SNMWO suggested another chemotherapy we haven’t tried yet or Immunotherapy. He also suggested reaching out to the University of Colorado Cancer Center about a clinical trial and this is the direction we decided to pursue.  Kaiser approved the referral earlier this week and I’ll be seeing Dr. Camidge on October 8 for a consult.

Waiting, watching, wondering. That’s what I’m doing right now. If I am eligible for one of UCHealth’s clinical trials, I’ll be switching over my treatment location and meeting a new team. I have mixed emotions about not being under the consistent and watchful eye of Dr. Narayanan. While I know he will be keeping tabs and will always be my number one go to, it feels like losing a friend, a partner, my gifted and trusted doctor and the quarterback of my team. How can anyone else possibly fill the size 20 shoes I have put him in? My expectation is that the mentor will live up to the brilliance and caring of his student, for you see, my SNMWO was once a Fellow* to this highly respected lung cancer specialist. Having already met Dr. Camidge is a plus, he was my second opinion doc and I have run into him at events and requested his expertise over the past three years. I know I would be in excellent hands but keeping it real while sharing with you the inner workings of my mind, as it relates to the realities of my world, is therapy for me and one of the reasons I write and bake cookies.

Have I told you lately how much I appreciate you, your prayers, support and love?

Stupid crazy cancer.

*A Fellowship is the period of medical training, in the United States and Canada, that a physician, dentist, or veterinarian may undertake after completing a specialty training program (residency). During this time (usually more than one year), the physician is known as a Fellow. Fellows are capable of acting as an Attending Physician or a Consultant Physician in the generalist field in which they were trained, such as Internal Medicine or Pediatrics. After completing a Fellowship in the relevant sub-specialty, the Physician is permitted to practice without direct supervision by other physicians in that sub-specialty, such as Cardiology or Oncology. WikipediA

It’s Not About The Hair…Well, It Kinda Is.

August 18, 2019

Pre-cancer, when someone would ask, “What physical attribute do you like the best about yourself?” my response would be, “My hair!” I had lots of it and like my astrological sign of Leo, it was my mane. In the 80’s it was “BIG”. In the 90’s it was still “Big” but not as “BIG”. In the 2000’s, “BIG” became relative and I added highlights and color to my still long, but less “BIG” tresses. My hair spoke to me. It reminded me of my femininity and I was adamant about not cutting it until I was very old or no longer capable of raising my arms high enough to put my mane into a ponytail.

Chemo changed all that.  

In May of 2017, shortly after I started on my second line of chemo, I had my head shaved. I didn’t want to wait for the day when it came out in handfuls. What remained of my long hair fell to the floor as Hana applied the clippers, a precursor of the changes yet to come. The day was significant because I had members of my posse with me. We made a day of it, taking pictures, lunching, it was a celebration of female camaraderie and support. There were no tears shed as these women fortified me and  I didn’t dwell that day on my shaved head as my pate was quickly covered by a beautiful natural hair wig. Over the next couple of years, I developed a love/hate relationship with my wig. It was hot. At times it felt like there was simply too much of it. Traveling was a challenge as was washing and styling. More and more, I found myself with a baseball cap, ignoring the wondering and often times, pitying looks.  

Changing treatments allowed my hair follicles to regenerate and slowly but surely, my hair grew back. No ponytail, only sassy, spiky, easy to deal with short “BIG” hair.  It felt pretty amazing. My wig was placed out of sight, no longer a reminder of hairless days, relegated to a shelf in the closet surrounded by darkness behind a closed door. 

But, the last time I found myself facing chemo and losing my hair it didn’t hurt this bad. This time it hurt and I mean physically hurt. My dying hair follicles were screaming in agony as I looked at Jim with tears in my eyes and pleaded with him to use the clippers we use for grooming Tess to shave off my hair. Being the good man that he is, he complied as I cried. Hearts were breaking in the back yard as Tess, hiding hyper vigilant behind glass doors, made ready to run if the clippers came in her direction. After the deed was done and my hard earned hair growth was swept up and tossed, I once again plunked a baseball cap on my freshly exposed scalp and we headed up for a few days of mountain therapy. Grateful not to be in pain, grateful that there wouldn’t be hair falling out in our mini house on wheels, grateful for the respite of the mountains with my man and my dog. Grateful that I had a few days to process the return of this crappy disease.

My wig has reemerged from its previously relegated position as closet shelf placeholder.  Washed and trimmed, I wear it when I want/need to go cancer incognito.  With or without my wig, I can feel my leonine alter ego once again noticeably thriving. Perhaps a bit wiser, more realistic and most importantly…still alive.  

Treatment update:

The first month of treatment (infusions once a week for three weeks followed by one week off) is behind me.  I started round two on 8/12 and I’ll get a two week break following treatment #6 on 8/26, perfectly timed so that I can be in Dallas to speak at Foundation Medicine’s annual meeting in September.  Scans are scheduled for September 16 and I’ll get results from my Super Ninja Most Wonderful Oncologist on the 17th.  While my neutrophils are taking a hit, my tumor markers are responding favorably. The side effects are mostly the same as before, raw tongue and fatigue being most bothersome.  I continue to rely heavily on acupuncture, massage, meditation and Love to ensure I’m doing everything I can to help mitigate the damage to healthy cells while encouraging the medicine to work. xoxo


What Was That Again?

I wish you could read my mind

as it would clear up my words.

Pinterest wisdom

July 9, 2019

There are many reasons I can think of that make writing update posts difficult. Sometimes, I am still in the throws of processing recent findings and I’m just not ready to go public with the news, be it good or bad. There’s also the fact that sometimes words are woefully inadequate to truly get across what I want to express. The reality is, I can’t control how you will interpret what I write or say and you can’t know how I struggle to get my deepest intensions across.

To make my point, these were the most impactful words written on my recent biopsy report: 

“Metastatic adenocarcinoma consistent with history of lung primary.” 

Packs a punch doesn’t it. I think the radiologist got his point across pretty well but I still came up with a few of my own interpretations:

1)“WOW! They must have gotten me mixed up with someone else.”    

2)  “I knew I shouldn’t have had those 8 desserts and 6 glasses of wine.”                           

And my favorite:

3)  “ARE YOU  F***ING KIDDING ME!”                                             

Denial 

Pain and Guilt 

Anger

I haven’t yet worked all the steps for this latest round but I believe Dr. Elisabeth Kubler Ross would still be a tiny bit proud.

After more than a week of discussions and opinions followed by more discussions and opinions, we decided today that the best option is for me to go back on systemic treatment. Since Taxotere and Cyramza worked so well for me in the past, I will return to a similar doublet. Taxol will be the drug of choice this time around along with Cyramza. This regimen won’t be as toxic, but the trade off is time; i.e., instead of getting treatment once every three weeks, I’ll be getting treatment once a week for three weeks with one week off and repeat.

I again say farewell to my hair, eyelashes, eyebrows and appetite and Jim and I will rekindle our relationships with the nurses in the infusion room. In the meantime, I’ve been digging deep and unearthing my backup mojo. Looks like I’m going to need it.

Sometimes the reality of this crazy cancer world I find myself living in, sweeps the rug right out from underneath me. Yet, while I’m floundering through the air, I can often catch a glimpse of sublime love and gratitude.

I know this because I’ve interpreted that God works in mysterious ways.

The COSMIC* Rollercoaster Ride

June 15, 2019

It’s not like I didn’t know this could happen.

It’s been pretty damn easy the past six months not having any cancer treatment. While it was strange only going into the infusion room to get my port flushed, this was purely maintenance. Things were looking good. An unplanned CT scan eleven weeks ago, because of issues which turned out to be blood pressure medication related, confirmed we were on the right track and we decided to stick with the planned six month PET/CT on June 11th and throw in the annual brain MRI for good measure.

“Your MRI is clean!” reported my Super Ninja Most Wonderful Oncologist.

“That’s AWESOME!” I replied. “How about the PET?”

Turns out the PET revealed two very small nodules near the left side of my bladder in the peritoneal cavity, each with slight metabolic uptake as well as slight metabolic uptake along the posterior margin of my uterus. “Well that doesn’t make sense…lung cancer doesn’t usually metastasize there.” we mused.

“Let’s get some additional eyes on this.” said SNMWO.

In short, I have a date with the Interventional Radiologist for a biopsy. It seems one of the nodules is fairly superficial and it shouldn’t be too difficult to get a tissue sample. Even though I would forgo furthering cancer research for zero disease, my cancer mutation is so rare that it isn’t in the COSMIC* database and there is interest in developing a cell line with a portion of said sample. While this research might not impact me, it could have potential future benefit for others. Passing it forward, doing my small part to help eradicate a disease that kills approximately 400 people every single day.

I’m not panicking, in fact I’m strangely calm.

We can see the radiologic changes in the lung from SBRT in January, but the lung itself looks good and the rest of my scan is clean. Choosing to focus on this golden tidbit of light and hope is now familiar, for I’ve been down this road before. Did I mention I’m one month short of my three year-stage four diagnosis date? Three years can seem awfully long…and awfully short.

Most importantly, I can still visualize a world without cancer. Its right there…can you see it?

*COSMIC is an online database of acquired mutations found in human cancer. Somatic mutations are those that occur in non-germline cells that are not inherited by children. COSMIC, an acronym of Catalogue of Somatic Mutations In Cancer, curates data from the Cancer Genome Project at the Sanger Institute. Wikipedia.

Where Everybody Knows Your Name

March 18, 2019

Today was Lung Cancer Support Group. Once a month, anywhere between five and twenty-five people gather in a basement meeting room at our Medical Center to be reminded that we are not in this alone. We show up by ourselves or with our significant others, take off our masks and deposit them in the trash bin by the door. Once we enter into this sacred basement room, we are enveloped by Lisa and Cecilia and Doreen. These remarkable women are our Lung Cancer Support Group Care Coordinators and they have created a sanctuary where we swim in the sea of shared experiences of pain, joy, anger, love, loss, relief and grief.  We squeeze together around a rectangular table and greet each other like they did on the TV sitcom Cheers. Except, instead of tipsy voices shouting: NORM!, joyful voices exclaim: ED! PATTY! ANNETTA! These three especially have shown us what tenacity, love and acceptance look like.

It took me months after I was diagnosed to show up at support group. I didn’t want to share my feelings, I didn’t want to admit that I had cancer.  What I imagined was a Twilight Zone version of a cancer twelve step program: “Hello, my name is Peggy and I have cancer”. To be completely honest, I initially resisted being in a support group because I was angry and I didn’t want to be reminded of the fleeting nature of life and death. I also didn’t want to feel the pain of loss.  If I hadn’t followed dear Cecilia’s encouragement, I would have missed out on this tightly knit group that expands and contracts. We welcome and release. We learn and we teach. We talk and we listen.  We laugh and we cry. We offer camaraderie and we offer hope.

Over the years, we have welcomed many new faces.  They arrive with that “deer in the headlights” look, the same look I had when I first walked in that door. Sometimes they come back and sometimes they don’t. Sometimes it’s just too much. Too much information, too much raw emotion, too much cancer.  It’s a group that no one willingly wants admittance to. We find ourselves here out of necessity and yet, no one understands our new normal better than the person sitting next to us. 

Having Jim at my side has been the greatest of all gifts. He joins me in being supported by this group and in turn, being supportive. Cancer after all, isn’t just about the person who has it. The commitment and love that is expressed by these incredible caregivers is so beautiful that I often find myself in tears when I hear them introduce themselves as husbands, wives, sherpa’s, cheerleaders, taxi drivers, lovers and teammates.

Some of the bravest people I have ever met sit around that table.

Yet, the last thing we think we are…is brave.

Telling Stories

We all have our stories. Our stories after all make up the tapestry of our lives. Several months ago, I was approached by Health Monitor Network wanting to feature my lung cancer story in their ‘Advanced Lung Cancer’ edition. A ninety minute phone interview followed by a 4 hour photo shoot and this is the final product. Jim and Tess handled their roles beautifully with Tess stealing the show showing off for the camera with a smile on her face and a dance in her step. She continues to amaze us with her resiliency.

I am honored and grateful that Health Monitor Network chose to share our stories, may they reach far and wide. Lung cancer remains the #1 cancer killer in the US, more than colon, breast and prostate cancers combined. Yet the dollars spent is drastically, unfathomably disproportionate in federal spending to other cancers. These statistics are beyond unacceptable and the only way the statistics will change is if our stories are told and action is taken. Share our stories. Change the statistics.

We ALL have lungs.

“Pay No Attention To The Man Behind The Curtain…”

January 14, 2019


the silent voice of the wizard whispers in my ear as I’m lying on my back, naked from the waist up, arms over my head, unable to move with a metal plate on my diaphragm. I’m trying desperately to not hyperventilate. There are cameras above me and I know someone is watching. The name Varian is imprinted on the space age machine hovering over me and I close my eyes and wait for ‘it’ to happen. 

Goodness, this sounds like a nightmare or a science fiction novel yet to be written. Instead, it’s my experience while getting SBRT to a cancerous nodule threatening to wake up in my lung. 

Other than having a metal plate locked into place on my diaphragm to ‘normalize’ my breathing this hasn’t been as bad as it sounds. Why the metal plate? I was told I was a very good Yogic breather – deep inhalations followed by long exhales. One would think this was a good thing but in this case, not a plus.

The staff is great. My doc is great. The medical physicist I’m told is great but I haven’t met him/her yet so I’ll take their word for it. The techs positioning me on the table are superbly considerate, professional and friendly, clearly explaining what they are doing and what will be happening. It took a week after getting 4D scans to come up with this treatment plan.  A tremendous amount of thought went in to mapping out the trajectory and how to give just the right amount of radiation to just the right areas while doing everything possible to avoid important things like nerves and bones and arteries.  So far, this treatment has been pain free and side effect free, everything that I was told it would be.

Jim and I will return on Monday, Wednesday and Friday this week for the final three SBRT treatments. When will I know if this has worked? Possibly not for six months. My next scan in two-three months will more than likely show an uptake in SUV activity because of inflammation caused by the radiation so the following scan will be a better indicator.

When I look back on the past two and a half years, I think I’ve done pretty well in confronting my fear, seeing it’s face and acknowledging what can be gained and/or lost. But, every time a new treatment arises, I must once again go back to the well and find more faith, more hope, and more strength. With help I find it, I always find it, but DAMN this is a crazy ride. 

While not very original this was a moment for me… I got my very first tattoos! I asked for something exotic with color, flowers and feathers but I was only allowed four tiny black dots for reference. Permanent reminders of a hopeful future. Too bad my insurance doesn’t cover body art. These tiny black dots are the beginnings of a new chapter and I think the completed picture will be quite lovely.

The awesome Kirsten and Ally with ‘Varian’ in the back

Blessing In Disguise

Millimeters to Inches (mm to in) conversion calculator – RapidTables.com

Millimeters (mm)Inches (“) (decimal)Inches (“) (fraction)
2 mm 0.0787 ″ 5/64 ″

My latest PET/CT revealed that the original nodule in my right lung which has been stable since August of 2017 is showing signs of activity. Not much really, a measly 2 mm of growth in one area with a measurable uptick in metabolic activity. There is also a second nodule which showed up three months ago. It too grew by 2 mm but doesn’t show any signs of metabolic activity and it’s questionable what it might or might not be. Keeping in mind that these nodules are only 9 mm and 7 mm respectively, I can’t feel them nor do I have any symptoms. Does 2 mm even count? I’m told that it does.

Blessing…what kind of blessing is this?!

First of all, other than these two nodules in my upper right lung, the rest of my body shows no signs of cancer. This is pretty incredible and don’t get me wrong, I am VERY, VERY grateful. But I’d like to get this off my chest (no pun intended)…

This is me screaming: “Two plus years of anxiety followed by relief followed by bliss – and repeat – RUDELY interrupted by a minuscule 2 mm!” “You’re f@**^%#  kidding me, RIGHT!”  I have occasional arguments with God now. The screaming is one-sided but I don’t think he/she minds. I’m pretty sure our relationship is better because of it. 

Secondly, because where a door closes a window opens, it looks like I might be a candidate for a specialized radiation therapy that has been shown to be very effective with dealing with this kind of activity called SBRT.  SBRT has shown to be more effective while boasting significantly less side effects and residual damage to surrounding tissue than previous radiation therapy methods. Metaphorically speaking, instead of intentionally setting off a nuclear bomb inside my body (overly strong image for dramatic purposes), high-powered ‘phasers’ (for you Star Trek fans) will be directed at these two busybodies hanging out in my lung by Messrs. Spock, Sulu and Chekov (not really, but I like the visual).

From Memorial Sloan Kettering: Stereotactic body radiation therapy, or SBRT, is a cancer treatment that delivers extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue. SBRT involves the use of sophisticated image guidance that pinpoints the exact three-dimensional location of a tumor so that the radiation can be more precisely delivered to cancer cells.

Sky Ridge Medical Center where I will be going for a consult on December 18th has recently acquired a SBRT device.  The radiation oncologist I will be seeing gained lots of experience in this modality while at MD Anderson Cancer Center in Houston. He received his under-grad at DU and completed a Fulbright Fellowship in Germany before getting his MD/PhD at Baylor. I looked him up on the internet and his picture makes him look like a child genius. Considering the length of his impressive resume, one would assume he’s at least half my age.  As long as he’s old enough to order a glass of wine at dinner without being carded, has steady hands and a well trained eye my level of comfort with him aiming phasers into my lung improves. These details are important. I didn’t see any mention of doing time at Star Fleet Academy but he is a Colorado native and that counts in my book.

Thirdly, my super-ninja-most-excellent oncologist and I haven’t decided whether to continue with a systemic treatment along with SBRT.  I know of some lung cancer survivors who have reached a similar (but not exact because no one has the exact cancer as anyone else) cross roads in treatment and SBRT alone has proven extremely effective even years later. There are also studies that show adding a systemic treatment such as chemotherapy, TKI’s or immunotherapy with SBRT have produced amazing results for many others. My super-ninja-most-excellent oncologist is pulling together options, ideas and resources for all of us to discuss and of course, I’m busy doing my own research because that’s just how I roll.

Do I think this could be a blessing in disguise?   YES.

SBRT has been likened to non-invasive surgery. The past two plus years have been about shrinking and stopping the cancer from growing and spreading and now that it’s small and seemingly contained, let’s get it gone. I’m also not burying my head in the sand. There are risks but I see this as a calculated risk with a potentially high degree of success. That, and my gut telling me to explore this avenue gives me continued enthusiasm and hope. There’s still so much more to learn and do and the love I receive and give continues to create an extraordinary life worth living. We ALL have the means inside us to experience an extraordinary life… just be you!

 

P.S. I’ve been asked by Foundation Medicine (they did my genomic testing) to be on their Patient Community Council. I’ll be going to Cambridge, MA for a couple of days of meetings and I’m excited to see where my tissue samples were analyzed and honored to be able to collaborate with others and share my views. 

I also have something else to share with you at a later date…stay tuned!

Road Tripping

October 16, 2018IMG_7010Just like most things in life, we all have our own unique relationship with money and how we spend or save it. I like the metaphor of money as energy. It fluctuates, coming in and going out, an exchange in constant motion monitored by the Universal Bank and Trust of the Cosmos.  Jim is a saver and I think he would agree with my 37 year observation that he weighs and measures – in depth – the pros and cons of almost every purchase.  Our motivations complement each other but I have been known to be a bit more, shall we say – spontaneous.  Let’s take the RV we just drove back to Colorado from California.  He’s been researching the best (and affordable) makes and models for a solid year. He’s read blogs, looked at hundreds of pictures, made phone calls, went on test drives and we even drove to Nebraska one Saturday to check a couple out.  Same make and model, same owner even, just not quite right….and so we waited.  Why an RV? Because we want to see and experience this country from a tiny-house-on-wheels perspective and we want to be able to take Tess the wonder dog with us.  It is currently unknown if ‘wonder dog’ will remain ‘wonderFUL dog’ when it comes to this type of travel.  After everything she’s been through, we know she has the ability to adapt but we also know she has a propensity for motion sickness which will add a certain degree of watchfulness and a supply of Dramamine.

We missed out on a few RV’s we were interested in because it seems the entire US currently wants their own tiny-house-on-wheels.  Living off the grid, back roading, mountain biking and escapism is on the rise and these RV jewels are hard to come by,  you have to react fast which is where I come in.  A few weeks ago, I went to San Diego with Georgia, Jim’s cousin, for some ocean therapy.

Jim: “Can you shoot up to Sun City and take a look at this RV that just went up for sale? It’s the make and model we are looking for and it only has 44,000 miles on it.”  He’s already done his research and weighed the pros and cons.

“Why not!” we say.

Me: “I’m going to buy it if we like it. We might even drive it back!”

“Call me…….” he said, cringing.

It was perfect. Literally, it looked practically new and Bill the seller, treated us to the most in-depth showing to date.  He’s a car guy cut from the same cloth as Jim so it was a bit freaky, yet familiar and comforting.  Test drive and one more phone call to the master negotiator at home to hone my negotiating skills and Bill accepted our offer.  I didn’t have to do much, Bill is a pretty cool dude.

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Why make this kind of investment when everything in our lives seems to be up in the air?  We have been living in 3-4 month increments relying on scans to tell us what our immediate future will look like.  Will we be able to enjoy our new tiny-house-on-wheels? YES.  Our intention is to enjoy this experience to the max.  We’ve agreed that it doesn’t matter whether we take three day trips or three week trips.  For the time being, I still have treatment every three weeks plus Jim has responsibilities that keep us fed, with a roof over our heads and medical insurance.

It has not escaped me that some with a cancer diagnosis don’t have the means to escape in an RV. But, I’ve had a revelation: I can’t save the world but I can determine to save myself, which in turn might have an effect on the world.  Quantum physics easily understood by reading, Because a Little Bug Went Ka-Choo.  Spending this time with Jim and Tess brings me joy, and love and joy are the breeding grounds for healing so I’ll take all I can get.IMG_6985

And now we have Bill! He’s our new BFF and a fellow cancer survivor.  We texted pictures and updates on our way back to Colorado and Bill sent us our first Christmas present of the year – a lock for one of the doors that he ordered and didn’t get the chance to install.

 

Jim smiled and nodded….like I said, cut from the same cloth.

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My Brush With Delinquency

August 18, 2018

There are many reasons I love living in Colorado. I love the mountains, I love being in the mountains, I love everything about the mountains. I love how much sunshine we get. I love the snow and the rain and the altitude and the fact that I can actually call myself a native, 4th or maybe it’s 5th generation Coloradan or Colorado-an, I’m never quite sure. And oh by the way, marijuana is legal.

I totally believed the ‘egg’ commercials that they showed impressionable teens in the 1970’s and 1980’s on TV and in schools:

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THIS IS YOUR BRAIN

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I just knew that if I were to ever take even one hit off a joint, my brain would look like the egg in the commercial….fried, broken and runny, they did a fine job finding their targeted audience with me.  And then there was college. Maybe my pot experience was so bad because I still had the egg picture in my soon-to-be-fried-brain. I was a terrible pot smoker, the highlights consist of me being paranoid and hungry.  I only took a few hits (like less than 10) spread out over a year or so because I was giving my brain the needed time to heal in between hits while feeling like one of the cool kids. Hash was worth a try, twice I went out on this limb. No paranoia but I had some pretty nasty finger burns from the hot knives…..look it up.  And I had no money to spend on drugs or cigarettes which set me up to be a total loser in the addiction department.

I can also attest to taking a few hits between the ages of 22 and 57. Again, paranoia  would set in and I was positive I’d be caught, sent to jail with my reputation in ruins and my family humiliated by my rap sheet.  Literally, I was sure I’d be the woman walking down the street with: I’m high and paranoid and hungry, emblazoned in white lettering on a khaki green jacket that everyone could see while scarfing down a bag of Fritos.

Fast forward to lung cancer and the magic world of medical marijuana for cancer/chemotherapy side effects. I tried the CBD chews first and they helped a bit, but then I decided why not brownies?  Chocolate brownies after all because chocolate is healthy. I’d tried brownies before and edibles are unpredictable. “Should I eat this much or this much? I don’t feel anything yet, should I have another bite? Wait, what was that sound? Did you hear that? Are those llamas?” Again, paranoia sets in and the high that everyone tells me I’ll love fades away into the sunset, unrequited. Then I decided to jump in feet first and make my own brownies.  MY BROWNIES included medical grade marijuana steeped in coconut oil. Seemed easy enough because I had a Ghirardelli brownie mix right there in my pantry, a bowl, spatula, eggs, water and ‘special oil’ aka: mary-jo, weed, pot, bud, dope, grass, whacky tobacky, ganja…..did you know that there are over 1000 names for marijuana going back hundreds of years? Now of course we refer to it as ‘cannabis’, it sounds so much more official and acceptable. 

To those of you that make just regular brownies, when they are cool and ready to be cut, haven’t you ever so sneakily cleaned off the knife and eaten the goo? There aren’t even any calories in brownie goo, right? Just to be on the safe side for the first batch I wouldn’t eat an entire brownie, I would be prudent and just eat the goo. After all, it’s a small knife, not even a half a brownie in total goo! If I would have followed the directions, I would have only eaten a very ‘teenie-tiny-bit’ and then waited a couple of hours to see what the effect would be. But I was remembering the good ol’ days when eating the goo off the knife was perfectly safe, calorie free and non-hallucinogenic.

Two hours later I was awakened by a barking dog. I didn’t even know who’s dog because in hindsight, Tess’s bark sounds like a trumpet with a rag stuffed in it. This was a BIG dog bark, and it was in my house. I rolled out of bed, waited until my legs felt like they were on the ground and walked through the house, upstairs and down. Don’t ask me how I got down the stairs or back up because I don’t have the foggiest. But, I do know that there was no barking dog to be found. To make matters worse, I found Tess on her pillow with that bored, “why are you walking around the house at 1:00 am you silly human!” expression on her face.  

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An hour later and again with the barking dog! More insistent, louder, demanding that I come and find it. This time however I was incredibly dizzy. I used the walls to steady my gait until I got to the living room and its one step. ‘How will I navigate the step?’ I ask myself. “Slide down on to the ground and make your way…” my fried-egg-brain-on-drugs told me. Of course, and down to the floor I slither for about 3 feet.

OH NO! I can’t stand up! I’m stoned out of my gourd! I can’t control this! OMG…what if the oil was actually laced with LSD and I’m having an acid trip and I might never come back! Oh the tragic-ness of it all! I won’t die from lung cancer after all! I’ll die from bad-bad LSD laced marijuana brownie goo! They will find me in my jammies…in the middle of the floor wrapped around an easy chair holding on as if it were a deck chair on the Titanic! 

And then a thought occured; “wait a second, Peggy! People pay good money for a high like this! Embrace the lack of control, what’s the big deal, you might just have a profound enlightening experience!” And then I fell asleep hugging the chair. Luckily, I did wake up in time to make it back to bed before Jim saw his wife of 36 years on the living room floor hugging the afore mentioned chair mumbling about barking dogs. 

On a serious note, medical marijuana has been a godsend in regards to my ability to sleep. I eat a ‘teeny-tiny’ square of brownie before bed and sleep like a baby. It’s my dessert and my sleeping pill and I just might be addicted, but I’m addicted to sleep, which is a good thing, and I’m not in jail and the dogs no longer bark in my non-fried-egg-brain.

Branching out…there are so many things cancer teaches us.

And now it’s time for my brownie.

So Much to Learn!

August 1st found me at Biodesix in Boulder. I’ll let them tell you about themselves:

“About Us:

Biodesix provides a more complete picture of a patient’s unique lung disease by harnessing powerful genomic and proteomic information. We develop and deliver innovative, blood-based diagnostics that address unmet clinical needs across the continuum of lung cancer care, from initial detection through palliative care.”

https://www.biodesix.com

A few weeks ago, I was asked by the Free to Breathe/Lung Cancer Research Foundation to give a lunch and learn presentation at Biodesix to share my story and encourage participation in the upcoming Denver – Free to Breathe Walk. Do I have a gripping story to tell? I think every cancer survivor has a gripping story. Thousands are diagnosed every day and consequently more gripping stories. Sometimes, actually most times, I wish that I had a different gripping story, one that didn’t have the word ‘lung cancer’ on the title page.  So, what am I learning?  For starters, I learned how to put together and deliver a PowerPoint presentation. Suffice it to say that being in front of a crowd is familiar to me, I’ve performed and sung on stage for more than 40 years. But this was much different. This was more intimate, more exposed, more laying it on the line, in some ways more terrifying, gratifying and immediate.

IMG_0003After lunch, I spent time with the Biodesix marketing team and then was given a tour of their state of the art laboratory. Everyone I met was dedicated to advancing lung cancer awareness, diagnostic excellence and lung cancer research. It was truly remarkable and I can see myself using their unique blood based diagnostics if the need arrises for a treatment change. They have much to offer and I am exited about their mission and encouraged by their success.  I thoroughly enjoyed what I learned that day and I’m very grateful to Free to Breathe/Lung Cancer Research Foundation for the opportunity.

Natalie, my Biodesix point-person-extraordinaire, and I looking official in white    lab coats.      ∨                              ∨                         ∨                                 ∨                         ∨IMG_0002

August 6 was my 60th birthday. I never thought I would be so excited about turning 60. YAY, I made it to 60! On the other hand, OMG… I’m 60!  My birthday evening was spent at the JW Marriott attending the Bonnie J. Addario Lung Cancer Foundation‘s: Lung Cancer Living Room.  Some might think this would be a questionable use of birthday celebration time, but not me, at least not this year. On stage was Dr. Ross Camidge, Dr. Dara Aisner and Dr. Chad Rusthoven from the University of Colorado along with patient advocate Janet Freeman-Daily. Two+ hours of hearing the latest from the greatest as well as meeting other survivors and those focused on research and advocacy.  What the Bonnie J. Addario Lung Cancer Foundation is doing is phenomenal.  Lung Cancer Living Room’s are offered throughout the country and these events are very well attended and watched on YouTube and FaceBook live.  Please check out their website to get the full overview of what this philanthropic organization is doing to empower patients while supporting important lung cancer research and awareness. https://www.lungcancerfoundation.org.  And this is the link for the August 6th Lung Cancer Living Room if you are interested:  https://www.youtube.com/watch?v=_LAypbQWBis .

There is much happening in the overwhelming world of lung cancer. Every day, strides are being made in early detection, new and evolving research, new treatments and overall awareness. To be honest, two years ago I neither knew nor cared beyond a passing interest.

Today, I know and I care. Very much.

XOXO

Here is the link to my team ‘The Possibilities’ if you would like to join us and/or donate to the Denver- Free to Breathe Walk, Sunday, October 7, 2018. http://participate.lcrf.org/site/TR/FreetoBreatheSignatureEvents/General?team_id=60673&pg=team&fr_id=3802

Biodesix will have their own team representing as well!

And this is the link to Lung Cancer Research Foundation’s website so you can see where the dollars raised from the Denver – Free to Breathe Walk will be going: https://www.lungcancerresearchfoundation.org

Promise Kept

July 19, 2018

It’s been two years. Two years! 

Even though I didn’t have a definitive answer on July 19, 2016, I saw the look on the ER doc’s face when he came in to give me the results of my CT scan. I remember the sound of his voice, the frankness, the urgency, the fact that he never looked me in the eye and I knew this news wasn’t good. I’ll never forget him imploring me to call for an appointment with the pulmonologist.

‘Do it tomorrow.’ 

‘First thing.’ 

‘Like, when you wake up.’ 

‘Call them.’ 

‘DON’T WAIT!’ 

Somethings we just can’t forget.

Last year on this day, I promised that I’d be writing a two year post diagnosis post. I can’t not tell you how incredible it is to be able to make good on that promise. Notice the use of the double negative above…sorry, I had to, it seems my sometimes ill-advised sense of humor is still intact and double negatives seem to be news worthy of late.

We cancer survivors, yes, I said survivors because we are still here, count our time from diagnosis in weeks, months, years….and sometimes in mere days.  Our oncologists and Dr. Google can give us an average prognosis if we ask, I didn’t.  But when you belong to online support groups like I do, it’s impossible not to compare outcomes and hear statistics. Just a few years ago it was rare to hear of a stage four lung cancer patient surviving five years after diagnosis, now there are many at 5 years and beyond.

Two years ago when I was diagnosed, this is what was so according to CURE TODAY.  I’m glad I didn’t read this then.

‘In 40 percent of NSCLC cases, the cancer is diagnosed in stage 4; in this stage, fewer than half of patients live a year, and only 10 percent survive two years.’

(https://www.curetoday.com/publications/cure/2016/lung-2016/a-new-era-of-hope-in-lung-cancer).

It’s been two years.  Two years!

In spite of the fact that I received a stage 4 diagnosis, I was otherwise healthy. My cancer burden was low meaning there wasn’t metastasis to the bones, brain or other organs outside of the chest cavity. However, when I chose to forgo chemo before my genomic testing was complete, I was going against my doctors recommendation. It took 3 months to get these results and quite miraculously, my cancer had not spread or grown in that 3 months. If it had, there’s a possibility that I wouldn’t be in the 10% club today. Now I understand why in October of 2016 when I answered a phone call from my doc while I was in San Diego enjoying the beach and awaiting results, he said:

“You’re in California? You flew? Are you ok?”

My uninformed response:

“Um, yeah…I’ve been walking miles every day, riding bikes, eating great food, talking till all hours of the morning and loving the beach. I feel great…what’s up?”

Let’s be clear, I’m not advocating going against doctors wishes, but in my case, ignorance was bliss and I truly believed that I was ok, I still do. It’s all a divine mystery. A mystery that is evolving and expanding every minute of every day and I find the mystery enthralling.

And so, two years and 28 various rounds of chemo later: 

*I’m older and somewhat wiser. The wiser part depends on when chemo brain decides to make it’s presence known. When it does we all just scratch our heads. “There’s a brilliant statement in there….somewhere….hold on….let me find it…. it was right here…”

*I’m more relaxed. Go figure.

*I’m more tolerant and accepting. Remember ‘don’t sweat the small stuff?’ Turns out it’s very good advice.

*I’m less vain. One has to adapt when ones fingernails turn yellow, hair…all hair… falls out and bruising makes me look like I’m 90. Don’t get me wrong, I’ll take all of the above if I can make it to 90.

*I take more risks.

*I laugh more.

*I cry more.

And then there’s the most important part of the past two years:    Gratitude.

*I’m thankful for my family and friends who have stood beside me, encouraging, supporting, laughing, crying and sharing their love.

*I’m thankful for Vignesh and my medical team.

*I’m thankful for Natalie, my acupuncturist and Leanna, my massage therapist.

*I’m thankful that I can be an advocate for lung cancer awareness and a voice for change.

*I’m thankful for my life.

*I’m thankful that YOU are in my life.

*I’m thankful for all of the incredible people I’ve been introduced to, since and because of, my diagnosis.

*I’m thankful for every morning, for every evening and all that lies in between.

*I’m thankful that my scans are stable and my tumor markers are flat.

*I’m thankful that my hair and eyelashes are growing back.

I could go on and on and on…..

I wonder…what will I write about next year for my three year post diagnosis post?

xo

What It’s Like On The Other Side Of The World

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May 30, 2018

Well, it’s 16 hours earlier… so it’s tomorrow, but sometimes it’s today.
Let’s see, I left Denver at 7:00 pm on Monday, April 16 and arrived in Sydney, Australia at 6:30 am on Wednesday, April 18. Then, I left Sydney at 10:15 am on Wednesday, May 2 and arrived in Denver at 1:30 pm on Wednesday, May 2.  How does that math even work?
April 16 – Lene and I hopped a plane to Sydney, a Mom and Daughter trip that was everything I’d hoped it would be and so much more. We walked and talked and ate some of the most beautiful food I have ever seen or tasted.
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Lene treated me to ‘La Boheme’ at an outdoor theatre while we gazed at the incredible Sydney Opera House across the harbor. We skipped across the water on ferries and water taxi’s, traveled to and fro by train, shopped (of course), saw the sights of Sydney and had an amazing adventure before joining our friends the Elliott’s at their home for a couple more days. It was priceless..well, not ‘priceless’ as in ‘free’ but getting to share this experience with my girl.. PRICE-LESS. Sadly, Lene then headed back home, 5 pounds of souvenir TimTam’s safely stashed in her luggage, and I hopped another plane to Port Macquarie to visit friends Karen and Linda, two of my broken knee sisters.
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We had a glorious time with lunches, walking the beaches, coffee’s, shopping, Koala hospital, Billabong Zoo, getting drenched by some incredible rain, rock painting and kangaroo spotting. We woke up to laughing (more like screaming) kookaburra and had an up close and personal visit from two tawny frogmouth owls. Karen and her husband Rob live on a farm and their sheep were lambing while Linda and I were there.  I will include pictures of little ‘Peggy’ and ‘Harris’, mine and Linda’s namesake’s. I do not want to know what happens to little Peggy and Harris, I choose to only remember their baby pictures.  Karen and family treated us to a glimpse of ‘real life’ Australia, and it was spectacular! Our last day together was spent driving to Brisbane and exploring South Beach before Linda flew back to Glasgow and I back to Sydney and the Elliott’s.
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Jim, Hellie, Emma, Zoe and Oscar Elliott are as close to family as one can get without actually being related and my time with them was filled with walks, tea, the beach, school shopping, hair braiding, bird watching and long talks. I miss having them within hugging distance. Will I return? There’s much still to see and do as I didn’t make it to the Great Barrier Reef or to visit my other knee sister Barb in Cairns, a great excuse to go back.
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Jim and Tess did quite well in the 16 days I was gone. The running joke was that Jim was eating pizza, drinking beer, and walking around the house in his underwear while I was away. There are no pictures or videos capturing his brush with bachelorhood that I am aware of, but he assures me that in the 3 hours between 5:00 and 8:00 while he was home and awake he took advantage of having the house all to himself. He dutifully did his best to eat all the frozen meals I had prepared for every day of the week, because you know, he could have starved of malnutrition without me. He assured me that pizza and beer contain all the IMPORTANT food groups but I chose to differ. Tess got lots of walks, hung out at the office, and helped Jim clean up any leftovers. I don’t think she missed me as much.
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3 days before I left for Australia I had treatment. Vignesh and I decided to leave out the Taxotere and just have the Cyramza infusion to give my body a short break. 2 days after I got back I had another Cyramza infusion and yet another this past Friday. New scans are scheduled for June 14 (PET/CT and MRI) and we will see what they reveal, my last scan was in February and stable. I felt great while in Australia and I’ve felt great since being home. I expect to get another stable or better report on the 15th when I see Vignesh, then we discuss what to do next. As I’ve said before, lung cancer is tricky and once we find something that works, it’s hard to make changes if we don’t have to. I can’t say that I’m looking forward to more chemo after having this break but there could be other options. First scan, then talk.
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That said, Australia – with Lene!!! Another incredible experience to add to my continuing lifetime of incredible experiences – how lucky am I !
I continue to be incredibly grateful for your continued prayers and love.
xo

Lung Cancer Leadership Conference

February 18, 2018

Atlanta, February 9-11, 2018

What an absolutely amazing weekend! Almost 100 advocates, caregivers, researchers, staff and 18 SURVIVORS were in attendance, a far cry from the 3 survivors that were in attendance just a few short years ago. Hearing the other survivors’ stories was remarkable. Some for just a year or two like me and others up to 10+ years. This of course was the premise, how to survive longer and thrive with lung cancer.  Free to Breathe and The Lung Cancer Research Foundation recently merged and the possibilities of what they will be able to do together in terms of research funding, awareness, advocacy and patient support will greatly influence the changing face of early detection and long term survival of lung cancer.

In two and a half days, we shared our stories and our past and ongoing efforts. We heard from researchers who are on the cutting edge of new and exciting discoveries. We heard a passionate key-note address from Chris Draft, former NFL linebacker who’s wife died at the age of 38, one year after she was diagnosed with stage 4 lung cancer.  Keasha was an amazingly healthy never smoker and I found that I resonated with her story. Because of my 3 years as a contracted sports massage therapist with the Denver Broncos, Chris and I found common ground.  We shared Al Miller stories. Al was the strength training coach at the time I was with the Broncos and was also Chris’s strength training coach while he was with the Falcons. But, Chris offered me more than a trip down memory lane, he encouraged me, no, he challenged me to share my story.

During the weekend I experienced a light bulb moment.  Thirty years ago when I began my training in massage therapy, we were told that we were on the cutting edge of taking a profession that had a somewhat questionable reputation forward to becoming a legitimized, regulated and licensed profession. We took on educating the public – our prospective clientele, to the benefits that could be derived from receiving therapeutic massage. In the past thirty years, I have watched massage therapy become mainstream. Energy healing, acupuncture and meditation, among many other healing modalities are now recognized as viable practices known to engage one’s own healing potential.  Being a player in helping advance the benefits found in the healing arts, along with my passion for the work, has proven humbling and profoundly fulfilling.

Now, another ground breaking opportunity has presented itself… thriving with lung cancer. Chris challenged me to join the many others seeking recognition and change by adding my voice, my face and my passion for finding a cure. Education and public awareness is where we start. It’s where we started with massage therapy to get the recognition and acceptance we now enjoy. Start where you are at. That is one of the messages I received this past weekend. We are committed to shining a long overdue spotlight on this underfunded, under recognized and highly stigmatized disease. 

We can’t forget about prevention, smoking is still the number one cause of lung cancer. But, I was taught that if I didn’t smoke, I wouldn’t get lung cancer. This is simply not true. The growing number of never smokers being diagnosed is all the proof we need and the stigma of somehow deserving lung cancer is not only cruel but counter productive to our cause.

There is more to healing than research and medicine, my years as a healer has shown me this. We are spiritual beings having a physical experience, not the other way around and so we must not forget that healing can take many paths. Approaching each person as a holistic being is imperative in my view and I was not shy in saying so.

That being said, I am impressed with, and inspired by, Free to Breathe and the Lung Cancer Research Foundation and its mission. This is the third year that team ‘The Possibilities’ will be participating in the Denver Free to Breathe Walk which will take place Sunday, October 7th, 2018 at Washington Park.  I am truly blessed that so many have joined us in the past and I hope this year’s event elevates our continued desire to raise awareness, destroy the stigma of lung cancer and raise much needed funds for research.

But I also want to capture the spirit of life and how very important it is that we live it fully and fearlessly.

Join me in walking.

Join me in living.

Join me in experiencing how deeply gratifying being a player in something BIG can be!

Participate big or small but I implore you to participate. One in fifteen men and one in seventeen women will be diagnosed with lung cancer this year alone. Keasha and I, along with thousands of others are proof that if you have lungs, you can get lung cancer. Join me in changing the stigma and the statistics.

We are starting early this year because we want this year to be the most impactful Denver event to date. I’ll follow up with the link to ‘The Possibilities’ team page in the near future so stay tuned. You can also start your own team! Invite your friends, family, co-workers, neighbors, etc. to participate. It truly is an extraordinary experience and I sincerely thank you for all you have already done not only for this cause, but for your prayers, your friendship, your love and your support.

xo

Dont. Poke. The. Bear.

February 5, 2018

I’m a pretty calm person for the most part, unless I have to take 150 mg of prednisone and 50 mg of Benadryl within a 13 hour span.  Backstory – 4 days after my last infusion, I experienced what turned out to be esophagitis.  That’s what we all thought it was from the beginning but then questions of potential heart issues or pulmonary embolism crept in a week later.  PE’s are a fairly common possibility with lung cancer and we are hyper aware of the possibility. So at 4:45 on a Thursday, it was off to my primary care physician who ordered a number of blood tests, an EKG and an Echocardiogram.  One of those blood tests came back too high, ahhhh yes, my friend the d-dimer. My PCP prepped me that this test would more than likely come back high, anytime there is cancer the d-dimer measures high. The question would be how high is too high and when does having a PE become more of a probability than a possibility. D-dimer is the test they do to measure markers for clotting, the average number should be less than 500, mine came back at 1940…..all hell broke loose.

Not one but two ER docs called alerting me to my ‘too high’ count. What to do??? I made the decision to wait the night and call the oncology department and my PCP the next morning. I didn’t feel like I was in any imminent danger and I know that I can’t have a contrast CT, which is what they would need to do to rule out PE, unless I was pre-medicated because I have an allergy to the contrast dye. Why not save the trip to the ER where they would just send me back home and wait until the drugs took effect (I’ve seen this movie before…twice). But because of my contrast predicament, I couldn’t get an out-patient CT scheduled until the following Monday. ‘Too long!’, my medical friends said and I ended up in the ER Friday afternoon. True to form, I was given an extremely painful shot of Luvenox (blood thinner) in my stomach and sent home with orders to start the pre-medication and return in the morning for the CT.

Steroids are an absolute savior for some. For me, it isn’t a friend of my stomach or to my serene disposition. After the first 50 mg of prednisone, I put out the warning to not ‘poke’ the bear, your life could depend on it. Saturday morning we return to the ER where we are informed that ‘some’ doctors, (ie.; the doc the night before) don’t know the ER protocol and I won’t be getting the CT….and the aforementioned bear rears it’s gigantic, hairy, big toothed- yet restrained – roaring head. In these moments, I’m never sure if I’m going to cry and yell, just yell or just cry.

Restrained raised voice: ’Not good enough. I’m already pre-medicated, I’m NOT doing this again!’ Ok, now it’s safe to cry.

My protective husband, who didn’t sleep much the night before either, joined in the fray as did Lene who came down from Steamboat, she can be quite the wildcat – we were a force to be reckoned with. These things take on a life of their own when the ball starts rolling down hill and the poor coordinator had to remind us several times not the kill the messenger. She hadn’t taken 150 mg of prednisone so she was no match for this bear and her protectors.

‘Go back and find another way!’

I got the CT.

No PE. 

Have a nice weekend.

Hope those steroids wear off soon.

On another note, my PET/CT was moved up a few weeks to last Friday and once again, all continues to be stable, we continue on with treatment. I’m safe to fly to Atlanta where I was invited by Free to Breathe and the Lung Cancer Research Foundation to attend the Lung Cancer Leadership Conference this weekend. I’m looking forward to hearing the latest and greatest news on lung cancer research from those who are actually doing the research. I’ll attend workshops and meet with advocates as well as fellow survivors. I’m thrilled for the opportunity and hope to bring back and share the highlights.

I will end this rather long update by thanking you for your continued prayers, friendship and love. I couldn’t do this without you.

xo

2018….It’s 2018!

January 1, 2018

I heard someone make a statement the other day on the radio about making New Year’s resolutions. He said that resolutions are important because they require us to set goals. Goals are like guide wires for success. But for goals to be attainable, we have to remember to remember that at the end of the previous year we thought we needed a new goal. This is where sticky notes come in. Colorful reminders plastered on mirrors and doors, in closets and refrigerators, on dashboards and rear view mirrors reminding us that we set a goal to be attained in 365 days. I can recall several New Year’s resolutions I made and wished I hadn’t. These I conveniently forgot about when the sticky notes lost their sticky.

So what made the potential New Year’s resolution list this year? Well, it’s not in my best interest to loose weight (never thought I’d ever say those words) so we can cross that oldie but goodie off the list. Can you make a resolution to grow more hair? Eyelashes in particular if anyone has any ideas. I could use more flexibility… yoga maybe? How about – take more vacations, sleep more, learn a new language, make at least one new recipe per week for dinner, drink more water, spend more time outdoors, take up a new hobby and while we’re at it, why not discover the cure for cancer.

All worthy options but none made the final cut.

2017 came and went without making a resolution. 2017 was mostly about gaining knowledge, and chemo and side effects and scans. 2018 is beginning with me knowing that my last scan didn’t detect any active cancer.  Yes, I’m still in treatment every 3 weeks and there will still be chemo and side effects and scans for the time being. But, 2018 begins with more knowledge, more peace, more love, more passion for life and less fear.

So my chosen resolution for 2018 is…fear less. I resolve to live life fearlessly.

It’s time to buy more sticky notes.

Wishing you all a very Happy, Healthy, Peaceful, Loving and Successful goal oriented New Year!

xo

A Good Case For Prozac

Lung Cancer Awareness Month

SCANXIETY RATE. THE TENSION WHICH BUILDS PARTICULARLY AMONGST THOSE WHO HAVE OR HAVE HAD CANCER AS THEY MOVE TOWARDS THEIR REGULAR CHECK UP SCAN. HYPERSCANXIETY BEING THE PERIOD AS THEY AWAIT RESULTS!

https://www.definition-of.com/scanxiety

10:00 p.m. Monday 11/20/17 – Delving into feelings, checking in with my body, not sure what it is telling me. Not sure I really want to know. What will the scan show in the morning? I send energy into all the places that feel stuck, take my melatonin and try to sleep with mixed results. Morning comes with me wondering if I slept at all.

6:00 a.m. Tuesday 11/21/17 – One of the many things that cancer has taught me about life is how deeply I must delve into the dark underbelly of emotions, for here are where the regrets and fears lie. The ‘what if’s’. The ‘if only’s’. This is where the ‘I wish’ taunting voices live. Am I doing and have I done, all that I can? I’ve sat in the recliner as the drugs of choice drip into my veins. I’ve sung, meditated, journaled, relaxed, studied, cooked, baked, visited, eaten, exercised, laughed, cried, prayed and loved. I’ve been vigilant with acupuncture and massage and energy healing and supplements. Has it been enough??? Thoughts run a continuous loop in my brain and I attempt to catch them. They are important, they tell me what reality I create. I write this all down preparing for a big bonfire.

6:45 a.m. Kaiser Lone Tree Office – Finger stick. Glucose is 83 (Wow, that’s good). Downstairs we go to where the big white PET/CT machine lives. Access my port, inject radioactive glucose, sit back and watch one hour’s worth of ‘Love Actually’ as the glucose is absorbed into my body so the camera can detect any cancerous metabolic activity. Scan time, I know the drill. Thank goodness I’m not claustrophobic, I am hungry however so I think about breakfast and try to stay awake so I don’t accidentally move.

9:45- Breakfast at Caitlyn’s Cafe. Guacamole and red pepper omelet, yum.

Home. Stay busy. Wait.

3:00 p.m. – Still waiting, waiting, waiting. In the past Vignesh has called very soon after my scan with results. The last two were really hopeful and he was relieved and happy as he delivered the news. He hasn’t called, yet. Busy day? Radiologists report delayed? Phone not working? (Nope, not that, just got a scam call) Bad news and he’s scoping out options? Really bad news and he’s delaying the news (we’ve gotten quite attached). Gone for Thanksgiving and forgot to tell us? Breathe…I’m ok.

What gives me peace right now, in this moment? Breathe…all is well. Breathe… I’m ok.

4:46 p.m. – Phone rings. Caller ID: Kaiser Oncology. It’s Paula, Vignesh’s nurse coordinator. What does this mean??? She has never called before!

Paula: ‘Doctor wanted to let you know we got the PET/CT scan results back and everything is stable. He will go over the results in more detail Monday at your appointment. Happy Thanksgiving!’

Stable disease. This is good news.

Happy Thanksgiving!

Breathe…

I’m ok.

WTF!

Lung Cancer Awareness Month

THE GOVERNMENT IS NOT FOCUSED ON FUNDING LUNG CANCER RESEARCH.

(https://www.lungevity.org/…/…/lung-cancer-funding-statistics)

*When I began my research into lung cancer research funding, I checked out where and how our federal government cancer research dollars were being spent as well as who was doing private research funding. What did I find when it came to where our federal monies are being spent? The monies spent are not proportional when it comes to cancer deaths per year.

Remember the statistics about the #1 cancer killer? I’ll refresh your memory.

Lung Cancer kills approximately 155,870 people per year in the U.S.

For comparison sake: Deaths per year in the U.S.

Breast Cancer – 41,070.

Prostate Cancer- 26,730.

Colorectal Cancer- 50,260.

What rocked my world is not only the sheer number of lives lost to lung cancer but also the disparity when it comes to federal funding.

Current U.S. Federal Research Funding Per Death:

Breast Cancer – $19,941.00

Prostate cancer – $14,178.00

Colorectal cancer – $6,470.00

Lung cancer – $2,399.00

http://www.freetobreathe.org/…/FreetoBreathe_FactSheet_2017…

What I want to shine a light on by making these comparisons is that when we look at the success rate of the breast cancer awareness, funding and research campaigns for example, we see that research funding directly impacts survival rates.

I’m waving my ‘NO FAIR’ card. Lung Cancer disproportionately kills more people than any one single cancer in the WORLD.

I want more funding.

MORE FACTS

Lung Cancer Awareness Month

LUNG CANCER IS THE LEADING CAUSE OF CANCER DEATHS IN WOMEN, KILLING MORE WOMEN EACH YEAR THAN BREAST CANCER, UTERINE CANCER, AND OVARIAN CANCER COMBINED.
(American Cancer Society. Cancer Facts and Figures 2017)

*Who knew!!! In my pre-diagnosis days, I believed that more women were dying from female related cancers than any other. I’ve participated in ‘Race For The Cure’, aimed at breast cancer awareness and raising money for breast cancer research. Every year I go in for my mammogram and Carol, my nurse practitioner and I talk about our families and our lives when I see her for my gyn check up. I have been vigilant, there is breast and ovarian cancer in my family after all.

Let’s say you see a woman who looks like she might be going through cancer treatment – what is the first thing that comes to mind? In the US, there are more women diagnosed with breast cancer (266,120) every year than lung cancer (112,350). But that number changes drastically when we talk about deaths. In 2017, breast cancer will take 40,016 women’s lives, lung cancer will take 71,280 women’s lives.

Everyone knows what the ribbon color is for breast cancer. Does anyone, other than someone with lung cancer and without looking it up on the internet know what color ribbon corresponds with lung cancer???
White

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Believe Me, I’m Aware

November 7, 2017

November is Lung Cancer Awareness Month

Excerpts from FaceBook Postsfullsizeoutput_21a7

Cancer treatment is difficult…and it doesn’t get easier.
(The World According to Peggy)

Today as I was sitting in the infusion center getting my 17th round of chemo, I locked eyes with a young woman sitting in the section across from me. It was her first infusion for a GI problem. She asked me ‘Do you have cancer?’ and I responded, ‘Yes, I do’. Instead of asking me questions, what she said was ‘I hope you feel better’. That simple beautiful statement brought tears to my eyes and all I could say was, ‘Thank you.’ In hindsight, I wish that I could have offered her more comfort, tell her that it wasn’t so bad and it would get easier. But it doesn’t get easier which is why I remained mute.

Somethings are now familiar, but not easier. Jim and I know the names of all the infusion center nurses. I know the protocol of getting my port accessed and how long it will take for each of the 4 different bags of drugs that drip into my vein to empty. Jim knows when to bring me ice, when to let me doze after getting the Benadryl and how to unplug my iv stand so that I can wheel it into the bathroom with me. The smiles on our faces when we walk out saying, “See you in 3 weeks” pretty much wraps up this portion of our new normal.

Today marks one year since beginning chemo. It’s been 16 months since diagnosis. AND I AM ALIVE!

What does get easier is living. Seeing the utter magnificence of a sunset, the fog along the walking path, the joy on new parents faces, getting a new clothes dryer, sitting by the ocean, taking a hike in the mountains, laughing with friends, loving my family. This is what gets easier. This makes doing whatever it takes worth it.

Chemo Has Aged Me…Cancer Has Changed Me

September 25, 2017

Let’s get honest shall we. Today I did a live interview on Channel 9 to plug the Denver-Free to Breathe event. There was much about this interview that took me out of my comfort zone and challenged me on many levels. First, my look has changed. My hair is coming back in, but is thin. The eyelashes on my right eye are almost non-existent. It took 11 minutes this morning to get my false eyelashes on. One minute for the left eye, ten minutes for the right. My eyes water…all the time and yet I have dry eyes and must use drops, hence, making it harder to keep the false eyelashes on. My skin is thinner; I bruise easily. My face is rounder yet my skin has less elasticity.

Leanna and I had talking points we needed to try and stick to today, yet I had 4 pages of notes which I couldn’t touch on. These are only a few of the facts I know about lung cancer today that I didn’t know 15 months ago:

~ Exposure to tobacco smoke is the primary etiologic factor responsible for lung cancer.                                                                               (Actually, I did know that).

~ Emerging information supports the notion that lung cancer in never-smokers is distinct enough from an epidemiological and biologic standpoint to be considered a separate entity. Yet lung cancer treatments have historically been the same. New targeted, biologic and immunotherapy drugs are changing the treatment and survival times for those who have the right genetic markers…this is a big step in the right direction.

~ As the numbers of never-smokers in the United States and other countries rises, the issue of lung cancer in this group becomes even more critical.

~ One in sixteen people in the US will be diagnosed with lung cancer in their lifetime. Trust me, no one thinks they will be the ‘ONE’.

~ 60-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers.

~ 18 – 20% of lung cancer cases are in never smokers (less than 100 cigarettes in a lifetime).

~ More than 2/3 of never-smokers diagnosed with lung cancer are women.

~ Lung cancer is the leading cause of cancer deaths, regardless of gender or ethnicity, taking almost 160,000 American lives each year.

~ More lives are lost to lung cancer than to colorectal, breast, and prostate cancers COMBINED.

~ Lung cancer has been the leading cancer killer of women since 1987, killing more women each year than breast cancer, uterine cancer and ovarian cancer COMBINED.

~ Lung cancer receives less federal research funding in comparison to other cancers. Funding per life lost for lung cancer is only $2,399.00. The next top three cancers receive an average 7.5x more funding per life lost. This is one of the reasons why I advocate and fundraise for lung cancer research and awareness.

~ The five-year survival rate for lung cancer in the US has risen only 1% in the last decade. This needs to change.

~ Adenocarcinoma- Of non-small cell lung cancers, this is the tumor most often found in young adults, women, and people who have never smoked. Lung adenocarcinoma usually begins in the outer regions of the lungs, and can grow quite large before it is detected. Since these tumors are usually located away from the airways, commonly recognized symptoms such as coughing are less common. Early symptoms are often subtle, shortness of breath with activity, chest and/or shoulder pain, and/or a general sense of ill health. I felt fine, it was the pain that alerted me.

~ And finally, the big one – Stigma. Prior research has suggested that the negative feelings people have about lung cancer are due to a combination of the stigma, blame and hopelessness.Stigma and blame meaning that lung cancer is often viewed as a self-inflicted disease caused by smoking. I don’t suffer from self imposed stigma but I do find that I often need to justify the fact that yes, I have lung cancer, and no, I never smoked. Everyone deserves a cure…everyone, no matter what kind of cancer or smoking history.

All that being said, I am in a very good place.  59 years old, I realize that my appearance will  change, cancer or no. My worry in a previous life of ‘Should I get botox?’ ‘Should I have my eyes done?’ ‘When should I consider a face lift?’ ‘What about CoolSculpting for those saddle bags?’ ‘Should I cut my hair and/or let it go grey?’ are relegated to a file in my brain computer labeled ‘Prior to Chemo’. This lesson in loving oneself -no matter what – is freeing. I’m beginning to like my pixie hair, false eyelashes and glasses – the new me. They reflect who I am today.  Do I catch others looking at the changes, comparing the new me with the old me, yes. It’s human nature. I can only hope that they also see the changes in ME and realize that these physical changes don’t hold a candle to the spiritual, mental and emotional changes I continually experience. No need for platitudes, I am comfortable with who I am. I don’t judge what anyone else does in this regard. If it brings more love of self then by all means do it!  I would have. There might even come a time when I consider these things again.  Who knows what tomorrow brings after all.

And so, I continue on. One foot in front of the other, learning, loving, being. I find meaning in advocating for lung cancer awareness and joy in the fact that I’m still here! Loving and enjoying being alive! That’s what matters to me today.

xo

Link to the Channel 9 Interview.

https://youtu.be/XCHasFZMHoM

Adventures In Scanning

August 29, 2017

We got the newest PET/CT results stating: ‘Excellent response to treatment’,  delivered by my happy, ever vigilant, super ninja, brilliant oncologist at 10:25 a.m. on Friday morning. (We got home at 10:00 a.m.) No need to spend the weekend, or the day for that matter, worrying about test results. He’s pretty special.

If you’ve never had the need for a PET/CT let me describe in detail and supply important shortcuts for a semi painless experience. First, one must fast for at least 6 hours prior so I’ve learned to call and get scheduled ASAP. This way you have a better chance of getting an early appointment, why starve all day? Next is a blood glucose finger stick to be sure blood sugar isn’t too high followed by accessing my port, injecting radioactive tracing glucose into my vein, and sitting back to wait for an hour while my body does it’s job of spreading the glucose through out. (The PET/CT allows the radiologist and Vignesh to see how the cancer metabolizes, and whether it has spread, or metastasized. In my case, it also shows how the tumor is responding to chemotherapy. If you look at the scan on a computer screen, the areas of active metabolic activity ‘light up’ like a lightbulb.)

During this hour of waiting, I am given the opportunity to watch a movie or TV program.  With the first scan I chose ‘Sense and Sensability’, Emma Thompson, Kate Winslet, Hugh Grant and Alan Rickman…sigh, I adore a good love story. For the second and third scans, I chose season 1, episodes 5, 6, 7 and 8 of ‘Friends’. Half-hour segments, more conducive to immediate gratification.  Scan 4 was one hour of ‘Legends of the Fall’, Brad Pitt, Aidin Quinn, Anthony Hopkins, Julia Ormand. This was a poor choice due to it’s plethora of blood, guts, death and tragedy in the first hour.  Great film, poor timing on my part. Entertainment for this latest scan was ‘The Holiday’, Kate Winslet (again), Cameron Diaz, Jude Law, and Jack Black. Begins with lots of angst, unrequited love, just plain sad love, and then the promise of new happy love – all in the first hour. Perfection.
I’ve seen these movies multiple times, I have the DVD’s at home.  I don’t think I could watch half a movie if I didn’t already know how it would end. I’m sure the disproportionate anxiety would somehow show up in the brain portion of my scan. Maybe best to stick with half hour tv shows.

Hmmmmm….that begs further delving…another metaphor for another time.

Off to the big white machine where I meditate while it’s taking the pictures that will tell us if the current treatment is working or if I will need to switch treatments. All in all, the scan itself takes about 20 minutes. I am then whisked out the door and told that it will take about 3 business days for results…they don’t know Vignesh!

I’m also given directions to drink LOTS of water after the scan. This is normally very easy to do. This time we got in the car at 12:30 to drive to Steamboat Springs to visit Lene and Jason.  I can tell you that there are at least 3 decent bathroom break opportunities we took advantage of after leaving Denver and before reaching Silverthorn, and, I can attest to their quick highway access and cleanliness. But, if you DON’T stop in Silverthorn for lunch/potty break, the next stop – Kremmling, and it’s promise of a bathroom, is a LONG…LONG…LONG ways away! The absolute longest 37 miles on Hwy 9 – kidneys doing the backstroke withstanding strong threats to switch to freestyle. It wasn’t pleasant – not even remotely.

Back to scan results, my tumor has shrunk in size to 1.1 cm., down in size from the June 2 scan where it measured 1.5 cm. SUV uptake in the tumor is currently 2.8 – down from 6.6. It looks on screen, in Jim’s words: ‘eclipsed’, hardly any brightness at all. No visual metastasis, no lymph node activity, slight pleural effusion that I cannot feel at all with 0 activity. This is really good news!!! We will continue with the Cyramza/Taxotere protocol every three weeks (#7 was today) until either progression (not) or toxicity (hope not). We didn’t go further with the what-if’s.

No need, lets enjoy the days, the weeks, the months, the years, etc.

xo

p.s.: Radio interview with Mel on KOOL 105 went great, I’ll attach the link after it has aired.

p.s.s.: We would absolutely LOVE to have you join us at the ‘Free to Breathe 5K Run/Walk’ on October 1 at Washington Park. If you can’t make the walk and would still like to participate, you can join our virtual team.  Our team name is “The Possibilities” and here is the link.

http://participate.freetobreathe.org/site/TR/FreetoBreatheSignatureEvents/General?team_id=59670&pg=team&fr_id=3593#.WaY5iK3MzaZ

Deep Breath

August 23, 2017

Time and memory are funny things, they are also subjective and at times fleeting.  Today I decided to start a journal to write in every day so that I can chronicle all the events that have been happening that are magical, worrisome, blissful and just plain interesting, at least to me. As I’ve said before, chemo brain is very real and I have developed a newfound empathy for those with dementia (in all its forms), brain injuries and menopause 🙂

As I look back at my calendar to jog my memory, these are the highlights of the past 5 weeks. I share this with you to highlight, I hope, how truly important it is that we take in every experience, every feeling, every nuance of life because life is truly a gift. I, for one, don’t want to waste a single moment.

July was highlighted by not only my one year cancerversary (July 19 was the day I became ‘aware’ that something was residing in my lung) but I also went with my dear friends Shawn, Susan and Salli to Shawn’s cabin near Fairplay.  Every year we pick an art project that all of us can participate in.  I am by far the least visually artistic amongst the group so I have become an expert at watching and mimicking. I love this time spent with my girls and this year was especially poignant as last year during this magical time together, the C word was only a possibility.

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August 6th was my 59th Birthday.  My 58th last year was memorable to be sure because of its shock value as I was officially diagnosed on August 4. Quite honestly, we weren’t sure I would be celebrating 59.  My parents helped celebrate the big day with us this year as they were flying out of DIA for a long awaited trip to Scotland. My wonderful ‘broken knee sister’ Linda picked them up in Glasgow for a day of visiting Pollock family sites, tea and scones and all around fun before they joined their tour group. They fell in love with Linda just like I did when 7 of us gathered from around the world and took Chicago by storm in October of 2015 to celebrate recovering from our broken knees. This October, Vicki, Tammy, Karen and Barb will be coming to Denver for more ‘shenanigans’.  Unfortunately, Linda will not be joining us but we plan on taking her with us via FaceTime on our adventures.

August 8 was Cyramza/Taxotere infusion #6.  I am VERY happy to report that my tumor markers remain in the normal range and are trending down. WHOOP!  Side note: for the first time since I began chemo treatments last November, my white blood counts were low.  Vignesh lowered the Taxotere by 20% fully expecting my counts to improve.  I have to admit that with everything that was going on, I let taking my supplements slip and I believe that played a role in my low counts.

August 19th found Stacey and I at the ‘Dinner in White’, a fundraiser that supports the University of Colorado Cancer Center. (More pictures) It was a truly beautiful event that my new friend Lisa (fellow lung cancer survivor) invited us to. We ate our picnic dinner, drank a glass of wine, listened to phenomenal speakers, and danced…and danced…and danced.

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August 20th was the Race 4 Research hosted by the Cancer League of Colorado. This was my 6th year of participating in this event. In the past, I lovingly participated in honor of my friend Kaylene who passed this Spring. This year, Stacy and Jay Montgomery, owners of the local Got Junk and You Move Me franchises sponsored a placard for me along the Miracle Mile. Stacy has been my trainer for several years and she, Jay and Kaylene (Stacy’s Mom), are past clients of mine who have become dear friends.  I will take this opportunity to say once again how truly blessed I am to have such amazingly loving and supportive people in my life!

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Jim and I said goodby last week to our nephew Tyler who has been living with us for the past 4 months.  He didn’t go far, just a few miles away, but we absolutely loved having him here and will miss his smiling face and loving spirit. He begins his last rotation before taking his boards and officially graduating with his doctorate in Physical Therapy. Life continues to offer us opportunities to give and receive love. I’m going to miss cooking for him and receiving my 10 second hug every day.

My parents arrived back from their Scotland adventure last Wednesday. I drove them back to Fruita yesterday, ate pizza and watched a Scotland slide show with my sisters and two of my beautiful Aunts stopped by for hugs! I drove back today, music blasting, minimal traffic, beautiful scenery, enjoying being alive!

And we arrive in the present moment where I have been sitting at my computer doing some research for a radio interview I was asked to do by the ‘Free to Breathe’ folks.  I agreed to the interview, which takes place tomorrow morning, to plug the Free to Breathe walk/run on October 1. This was what I was sent from the media company: Listen to Colorado Conversation every Sunday at 6am on Mix 100, 7:30am & 11pm on Kool 105 and 11:30pm on 92.5 The Wolf!

This Friday morning is PET/CT day and I am asking for your good thoughts and prayers.  I have been feeling great! Chemo side effects still occasionally interrupt my life. My hair is growing back, hallelujah, and I’m glad that I have my wig for those big events. Taste is still next to nil, I am getting moon face, and Vignesh and I are keeping our eyes on the horizon for new and better treatments should I need them. I find that the days before/after scans can be somewhat anxiety ridden so we are going to Steamboat to see Lene and Jason and generally enjoy some extra special time with our kids. My belief is strong, my body is strong, my relationships are strong.  I am loved. I love.  I am blessed!

xo

 

 

A Year In The Life

July 19, 2017

July 19, 2016 – One Year Ago Today

It was the afternoon and I was at my nutritional consultant/master herbalist for my 3 month check. I told her that I had experienced some chest/lung area/upper abdominal pain a few nights earlier. It kept me awake and I wanted to talk it through as the pain resolved for the most part but I could still feel something when I took a deep breath or turned in just the right way.

‘Any other symptoms?” she asked.

No, nothing I could put my finger on. So we did some body testing.

“Gallbladder?”  Nope.     “Heart?”  Nope.    “ Liver?”  Nope.

Hmmmmm. And then a thought came to me.  I had a client who came for a massage once who was having similar pain, it turned out to be a PE – pulmonary embolism.  CHECK!

“Can you drive yourself to Urgent Care?”

Uh…Absolutely.

Phone call to Jim to let him know I was headed to Kaiser urgent care. But stay put, I’ll call when I’m headed home. Just want to rule out a PE. Shouldn’t take too long for life as we know it to take a 180 degree turn.

Once there, I gave my list of symptoms to the admissions nurse, thought to ask for a D-Dimer test to check for a PE, had blood drawn and a chest X-ray. My urgent care doc that day was new, young,  handsome and the nurses enjoyed teasing him about just about everything. Funny what one remembers. My curtained room was very close to the doctors station and I could watch as they pulled up test results on their computers. There were quite a few patients that afternoon and I found it fascinating watching the myriad of expressions on the doctors faces as they read their reports.

Uh oh, what was that look on my handsome docs face? He rubbed his eyes and kept staring at the computer screen, double checking, buying time, collecting his thoughts. It was obvious to me that he was gearing up to give someone bad news. Must be someone else’s results I thought to myself, I don’t feel bad enough to warrant that look. But then he made some phone calls, shook his head, took a breath, grabbed a chart…my chart as it turned out…and headed my way. I smiled, he didn’t.

Handsome Doc: “There is a shadow on your X-Ray, right lung, and your D-Dimer is high. Could be a PE, could be something else. Can you get to St. Joseph’s for a contrast CT?”

Me: ‘Yes, but I have a contrast dye reaction so they will need to pre-medicate me’.

Handsome Doc: “Can’t wait that long. Can you get to Swedish so they can do a nuclear CT?”

I stopped smiling and called Handsome Husband.

“ Hi Honey. Don’t be alarmed but I’m on my way to Swedish for a CT. Meet me there?”

One year. Seems so long ago. Seems like yesterday. Where’s Bobby Ewing and his Dallas dream sequence when you need to borrow it.

In the past year, I have known 3 people who have died of cancer. One, 8 months after a diagnosis of esophageal cancer. One who had been successfully living with multiple myeloma for 6 years to be then diagnosed with a second concurrent cancer – pancreatic. The third successfully beat melanoma years before being diagnosed with a rare form of blood cancer. He was a warrior and put up a valiant fight before running out of treatment options. They were all warriors. They each took on their disease and their life in ways that resonated with them. I also know of at least three others who have been diagnosed with one form of cancer or another just in the past few months. It’s like when you buy a new car and then that’s the only car you see on the road.  Were there always this many cars on the road like mine?  Were there always this many people in the periphery of my life fighting this disease?

I haven’t asked yet what the past year has been like for those on the front line whom my diagnosis has touched. It might be easier for the person with cancer than for their family and friends. Family and friends have to watch and wait. The word impotent comes to mind because it’s not ‘their’ cancer. They cannot take it away or banish it as much as they might want to.  Their job is to be supportive while feeling helpless. They worry about saying or doing too much while balancing the fear of doing or saying too little. They (you) have the more difficult role to play in this drama and yet, you are helping so much more than you know. You comfort me, bring normalcy to my days, ease my fears and remind me that there is so much to look forward to. You bring me joy and I recognize the God spark in your faces, your thoughts, words and deeds. And still after a year, my current reality is shockingly unfamiliar to me. Aren’t I supposed to be the healer, the supporter, the caregiver? I am already really good in that role after all, I made my living doing it. What the heck is this! Who turned the friggin’ tables!!!  I’m reminded of the line in Jerry Maguire at the end of the movie when he gives the ‘you complete me’ speech before Renee Zellweger delivers her famous line: ‘Shut up. Just shut up. You had me at Hello’.

Jerry says: “…..This used to be my specialty. I was good in a living room. Send me in there, I’ll do it alone…”

Healer. Heal. Thyself.

Does it suck?   Depends on the day.  But I am learning, yes I am.

Before we leave Jerry, as you know he discovers that he can not do it alone. Live and love that is.  I also cannot and have not navigated this past year alone. You have been on this ride with me.  I have learned much. I have experienced so much love.  I am forever healed.

I fully expect to be delivering a two-year ‘caniversary’ post, one year from now.

And then a three-year….

Four year…..

Five year….

etc…. etc…. etc…

As always, I am deeply thankful for your continued prayers, energy and good wishes. I am abundantly blessed.

xo

Cautiously Optimistic…Secretly Overjoyed

June 7, 2017

My PET/CT was last Friday at 1:30 and Vignesh called 40 minutes after we got home with news.  He was excited to tell us that the scan results looked good! He didn’t have the radiologists report but he’s a great doc and from his standpoint, we had news to celebrate and he wanted us to know this going into the weekend..what a special man.

Paraphrased from the radiologists report: Pleural effusion is diminished, pleural thickening has decreased significantly and is no longer visible or measurable hyperbolically, meaning no SUV uptake which means the cancer in this area is not noticeably active. I no longer have any FDG avid lymph nodes,  my tumor has decreased in size and SUV uptake is down overall.  My tumor markers have markedly reduced, one falling into the ‘high normal’ category and the other slightly outside the normal range.  These are the best tumor markers to date.  My blood tests are great. WBC, RBC, platelets, etc., are all within normal range and Vignesh said ‘Whatever you’re doing…keep doing it!’

Side effects remain the same, mouth, tongue and throat sores, loss of taste, occasional fatigue, especially during my ‘down days’ and continued hair loss. I did have another issue with GERD after my last treatment so last week I had an upper GI series to make sure I didn’t have any bleeding ulcers or overt signs of problems in my esophagus or stomach.  All was normal and Vignesh thinks I was having a bad reaction to the steroid I was taking the day before, during and the day after my infusions.  So no oral steroid this time, we tried IV steroid just before my infusion yesterday. Vignesh also suggested I take L-Lysine (essential amino acid) to help combat the mouth sores as well as sucking on ice and I’ll be keeping the CBD and anti-nausea meds on hand.

I will stay with this regimen unless I have an increase in symptoms or the chemo becomes toxic in which case the dose will be reduced or stopped. Until then, we expect reduction/disappearance of the tumor as well as attaining NED (no evidence of disease). I visualize this every day.

Enough medical speak?

It’s been almost 11 months since my diagnosis and life has most certainly changed. When asked by people I am meeting for the first time what I do for a living, I say – ‘Managing cancer. It’s a full-time job.’ This limbo can be challenging. The lead up to scans causes anxiety, the loss of taste is disheartening and then there’s the hair thing but cancer also brings amazing opportunities if one chooses to see them…I do my best to see them.

I LOVE Spring/Summer, I’m a Leo sun girl and this weather is glorious, I am blessed.

xo

It’s Called The Second Line

April 28, 2017

This week it was officially decided that I would/could not wait for the insurance company and drug manufacturer to get on the same page with Afatinib.  Even though my pleural pain had not gotten worse, it had also not gotten better and so we move on to the second line of treatment which is Cyramza and Taxotere. Both names sound like they could be used in the next Hunger Games sequel.

This is what I have learned:

Cyramza is a fairly new biologic drug called a monoclonal antibody, a new type of ‘targeted’ cancer therapy. I quote here from my 2 page handout: ‘Antibodies are an integral part of the body’s immune system.  Normally, the body creates antibodies in response to an antigen (such as a protein in a germ) that has entered the body. The antibodies attach to the antigen in order to mark it for destruction by the immune system….Since monoclonal antibodies target only specific cells, they may cause less toxicity to heathy cells. Monoclonal antibody therapy is usually given only for cancers in which the antigens (and the respective antibodies) have been identified already.” And to paraphrase the next 3 paragraphs, solid cancer tumors cannot grow beyond a limited size without an adequate blood supply and because this drug inhibits/blocks the action of VEGFR-2 (vascular endothelial growth factor receptor-2) it basically starves the tumor by cutting off its blood supply.

Taxotere belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants…don’t let this fool you, some plants are poisonous. This is how Taxotere works: “Antimicrotubule agents (such as Taxotere), inhibit the microtubule structures within the cell. Microtubules are part of the cell’s apparatus for dividing and replicating itself.  Inhibition of these structures ultimately results in cell death.”

Side effects are varied but I have been assured that the remaining 2/3 of my hair could fall out. How vain am I ??? I guess I’ll find out. As I told my hair follicle challenged Dad over Easter, “If I have inherited your head shape, I’m in deep trouble…”. In the mean time, Stacey and I preemptively found a great wig 🙂 Prayers please that I won’t be in the small percentage of those who experience permanent hair loss, that would be another lesson altogether.

I am going forward with the appeal process necessary in hopes of still being approved to try Afatinib. In the interim, I fully anticipate that this new protocol is going to slow down/stop the cancer from growing and allow me to enter the NED phase (no evidence of disease). Like before, I get this combo every three weeks and will have at least 2-3 cycles before re-scanning. My nadir (meaning low point) is between 4-9 days after treatment. This is when I experience low blood counts and the majority of side effects. It’s supposed to snow this weekend so hibernation will be much easier, plenty of soup on hand and my trusty caregivers at the ready.

And so my journey continues. I am grateful that Dr. Narayanan and Dr. Camidge confer with each other on my medical treatment. I continue with my complementary treatments and overall I am feeling pretty darn good.  There are many wonderful things happening in my life and I continue to look for and find the joy in every moment. Today, I am still in my pj’s at noon….life is good!

Thank you for your continued prayers and good thoughts.

xo

And the Answer Is…….

April 12, 2017

We got a call from Vignesh last Friday. Kaiser’s parameters for treatment only allows for ‘proven’ clinical results and as we know, I would be the first to try Afatinib for my EGFR truncation intron 27 mutation. He wasn’t able to get past go, didn’t collect $200.00, couldn’t get any FaceTime either.   And so we are trying to go directly to the drug manufacturer to see if they will:

1.) First and foremost, approve the drug to be used in this way. Again, it has never been tried and I was told an appeal would have to be made to the powers that be to get their go ahead. Unfortunately, there is no time limit on their answer.  It could take 2 days or it could take months. There is money and reputation at risk for them, I get it.

2.) IF they approve the drug then we would need a break on cost.  According to their website, this gold-plated drug runs about $7800.00 per month, $5300.00(+) if we could get it out of Canada. Almost $200.00 per day for a pill that will most likely give me acne and diarrhea, still trying to wrap my brain around that one. They do have a program to apply for reduced cost. Taking it one step at a time, keeping my pony from jumping out of the starting gate too early. I am also looking into organizations that help with Rx costs but again, trail blazing unknown territory comes at a cost and trying something for the first time is at best, unpredictable.  No need to panic, there is still much to be revealed.

That’s where we stand.  I really don’t have any more answers at this point, we are looking closely at our options.  Vignesh suggests we become the ‘squeaky mouse’, (I love that term) and we will all do our part to get past this hurdle.  This is cancer, there will be more hurdles but life is an adventure and I am extremely cognizant of the gift.

My next appointment is the 25th and Vignesh will keep us abreast of any news until then. And me? I continue my own personal woo woo. There is a plan, God always has a plan. That doesn’t necessarily mean that it looks like OUR limited vision plan, that’s part of the adventure!

Thank you prayer warriors, energy givers and positive thought makers.  You are integral members of my team and I am forever grateful.

xoxo

Woaaaaaa Nellie!

April 5, 2017

HALT! It’s time to change horses.

Dang this cancer is a worthy opponent. We’ve reached a fork in the road for the Carbo/Alimta chemo pony. She fought hard, worked up a good sweat and traveled as far as she could go.  A PET/CT scan last week revealed progression back to the pleura, one lymph node and primary tumor. Not back to square one, but progression and so we move onto a fresher horse. A beautiful strong filly named Afatinib and tagged with ‘targeted treatment’, a fresh blanket, saddle, reins, bit, and a new riding habit for me.

Jim, Lene and I met with Vignesh yesterday to go over the new findings and discuss a new plan of action.  Vignesh was well prepared and spent over an hour with us going over the suggested treatment plan and answering all of our questions. He had already called and talked with Dr. Camidge and Dr. Doebele at UCHealth and as my extended team, they think that even though it has never been tried before with my specific and weird for lung cancer EGFR mutation, we want to give targeted treatment a go.  Why and what is Afatinib? Afatinib is a TKI, or an irreversible kinase inhibitor that targets the kinase domains of among others, EGFR which encodes the epidermal growth factor receptor which belongs to a class of proteins called receptor tyrosine kinases…that’s a mouthful. Why Afatinib? Because I have some of the best minds in the biz saying it’s worth a shot and my gut says go for it. Afatinib won’t go after my good cells but will attack the cancer cells which is why targeted treatments hold so much promise. Will it work? We will know 2 or so months after I start the protocol.  I will be keeping my port for now for blood draws and such but the targeted treatments are tablets that I will take everyday.

There is one very large obstacle course jump that Vignesh has to overcome which is presenting this course of action to a consortium review at Kaiser.  Five other oncology docs and one pharmacist have to place their bets that this treatment holds promise and is worth taking the risk on. It’s my life.  I’m willing to roll the dice but they have to pay for most of it. If it works, then it would be possible that others with EGFR aberrations could possibly respond positively as well, and I’m all about paying it forward. We should know their decision sometime middle of next week and then start treatment sometime the week after if all goes well.  Vignesh says he’s up for the challenge and will make a compelling case, and being the super ninja doc he is, I know he will do his absolute best.

The more I research NSCLC, the more understanding I have of this specific cancer and the catch phrase is ‘always stay one step ahead’. It’s tricky, a worthy opponent to be sure. In the mean time I am relieved that I have 2 weeks sans chemo where I can polish my spurs and focus my energy on continuing being as healthy as I possibly can.  My blood work came back amazingly good. Vignesh actually said that after seeing the blood results, he was having a hard time believing the PET/CT! Other than some pleural pain, I feel great and there is still no metastasis outside of the right lung. As he says, “except for the lung cancer, you are in amazing good health”! Cudo’s to those prayers!!!

The side effects of Afatinib aren’t pretty…literally.  Most people taking the drug report an acne like rash, sun sensitivity and dare I say it, diarrhea. I just figured out the constipation, now we get to experience the other end of the spectrum, HA! These are the most reported but like any good TV commercial with side effects, I will be hyper aware of other possibilities.

Semi happy note, I believe the hair loss will slow down but I could have new growth that is very curly and a different color, most likely grey, can’t catch a break on this one. Unfortunately, the opportunity for long blond tresses which I have coveted at times over the years is definitely not an option…living longer is, however.

Again, I thank you for your continued prayers, good wishes and positive energy. I’ll update next when I know more.

xo

Particles of Speech

March 22, 2017

Adjectives are descriptive. But what does one do when adjectives are simply inadequate?

The benefit concert for yours truly last Monday was (insert adjectives here…) overwhelming, humbling, fun, uncomfortable, sublime, gratifying, surprising, etc. Bob and Shawn and Mike and Erik and Dave and Bill and Sharon (aka: Bob’s Basement Band) along with Sandy and The BoB, hosted a most wonderful night. If you were there, you know that Sharon went to local restaurants and received baked goods to sell as well as displaying/selling/donating proceeds from her son’s amazing art work. She manned the room all night and was true to her role as band den mother. Shawn not only performed and helped set up the stage but also had for sale her amazing masks. Sandy, dear lady, displayed, sold and donated proceeds from her beautiful jewelry. The BoB gave a portion of their beer proceeds for the night. Bob and the guys drug up the sound system from the basement and played all night giving of their incredible talent and generous spirit.  People came and listened and sang along and celebrated. Indeed, I am overwhelmed and humbled.

I was one of those people who would hear stories about someone else’s life altering diagnosis and while having empathy and compassion, I would also be relieved that something like that could never happen to me. Could never happen until it did, that is. I’ve always operated on the belief that money is energy and I find joy in the earning of it. And so to find myself in the position of accepting money for something I don’t feel like I earned is unfamiliar and uncomfortable to say the least.  Questions arise in my thoughts regarding my worthiness to be the recipient of such giving. Am I grateful?  YES!  I am eternally grateful for your largess and for supporting me in my process. You came to hear me sing again, or you sent checks, or called to wish me well, or sent me a prayer…you showed up for me, and I am humbled and beyond joyful because of this. I have been blessed with not only monetary support but also emotional and spiritual support.  Your prayers as I have repeatedly stressed mean the world to me. They impact my healing in ways that are price-less.

My maintenance chemo infusion was last Tuesday and I’m glad to say that it has been a pretty good week. Each treatment is different and it’s hard to gauge how I will be feeling day-to-day for about a week after.  April 4 will be maintenance Alimta #4 and Vignesh wants another PET scan 2 weeks after that to determine how well it is working.  I continue to feel good even though I find myself somewhat hyper vigilant about every little pain, sleepless night or cough.  My continued meditations helps calm the nerves and keeps me centered. I started back to weight training class and am regaining muscle that I initially lost so quickly.  Stacy and the girls keep me on my toes and I look forward to Tuesdays and Thursdays to see how strong I am getting.

I’ll attach a pic of me and my date for the benefit. Sorry ladies…he’s taken 🙂

xo

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Singing and Celebrating

February 27, 2017

Alimta maintenance #2…DONE!  I had some moral support last week as Mom and Dad were visiting and joined Jim and I at the infusion center. They now have a visual of what takes place and hopefully their fears have abated somewhat. My next scan will be the end of March and we are anticipating and praying that the primary tumor will have shrunk even more and there is no progression.  I do have one tumor marker that continues to fluctuate but last week it was down again by more than half and Vignesh was quite pleased. To let you know how well we are getting on, when I asked him why he thought the marker was fluctuating he responded, ‘I don’t know, Peggy. You must be weird.’  I in turn replied, ‘ HA! You are not the first person to tell me that!’ — He actually belly laughed. Because of this wayward marker I had a brain MRI a couple of weeks ago and I’m happy to say that all is clear.

On to other things…my band mates have put together a benefit in my honor. Even though I have participated in many benefits as a performer, having one for ME has put me a little (a lot) out of my comfort zone. There have been friends wanting to support and participate in my healing in a monetary way so a portion of the proceeds will go to supporting my complementary treatments not covered by insurance. My dear friends and I are sending this invite to come hear live music (yes, I will be singing with Bob’s Basement Band), sing along, have loads of fun and celebrate life. The BoB serves craft beer and you are welcome to bring in your own dinner as the BoB doesn’t offer food. Monday, March 13, 6:00-8:00, The Brew on Broadway (The BoB).

May I again express how grateful I am for your continued prayers and good thoughts.

xo

Something About Caterpillars and Opposable Thumbs

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February 1, 2017

Consult with Vignesh yesterday resulted in truly wonderful news.  As reported earlier, the pleural metastasis and pleural effusion has completely resolved and it looks like the lymph node involvement has resolved as well! There is reduction in the primary tumor and the SUV uptake in that tumor is half of what it was in August. There was talk about radiating this tumor but we decided to take the wait and see approach and resume talks after my next PET scan to be scheduled at the end of March. Until then, I will continue with Alimta maintenance every three weeks which will be much easier on my body, mind and spirit as well as continuing my complementary therapies. Once we get the tumor markers back, we will decide if another MRI of my brain is warranted.

It’s time now to take a breath and give thanks to all of you, my incredible support team, and give special recognition to my rock, my ground, my love, my hubby. He has been beside me every step of the way and along with my dear family are my focus and my strength.  My extended family and  friends have been beyond incredible as well, going above and beyond, my heart if truly welling with love for you all.

I am loving our new home and am looking forward to Spring and watching the new plants emerge, working in the dirt and relishing in the beauty that surrounds me. Until then, I continue to hibernate as Winter dictates and delve deeply into this experience. I have no doubt that I will continue to beat the odds. Love above all reigns supreme and your prayers and good wishes mean the world to me and are beyond doubt, contributing to my healing.

On another personal note, I am in desperate need of a primer for putting on these ##%&^%#^ false eyelashes! It’s like gluing caterpillars to my eyelids without opposable thumbs. This is most definitely a lesson in vanity 🙂

xo

Happy Dancing

 
Yesterday I had my PET/CT scan. Initially, I was told that it would take 3 business days to get the results so when my cell phone rang this afternoon with Vignesh’s caller ID, I felt my knees go weak. Now, because the Universe has a sense of humor it was only right that I would receive this potentially earth shattering news while standing in Sally Beauty Supply buying false eyelashes for my nearly bald eyelids. Let’s just say that chemo is an equal opportunity employer when it comes to hair. 
 
I could tell right away that the news was good because my super ninja oncologist had a lilt in his voice at ‘hello’. In his words: ‘I have good news about your scan. There has been tumor shrinkage and the pleural metastasis and pleural effusion seems to be completely gone.’ We were both doing the happy dance – me in Sally Beauty Supply, surrounded by a variety of hair care and beauty products, and he somewhere more private I’m sure. 
 
Next Tuesday with questions in hand and long lush eyelashes glued in place, Jim and I will meet with Vignesh to discuss and plan our next step. 
Thank you for your continued prayers, love and good wishes, they are working!
 
xo

Movies and Metaphors

IMG_5413January 9, 2017

Remember at the beginning of the movie ‘The Matrix’ when Neo is asked to choose between the red pill and the blue pill?  The blue pill would take him back to ‘life’ as he knew it and the red pill would awaken him to the truth about The Matrix. Being our hero, Neo swallows the red pill and awakens suffocating and fighting for his life, jumping into a reality he never dreamed existed.
I feel gypped, like I didn’t get a choice – red pill or blue pill… totally unfair.

Fast forward to Neo and crew strapped down in chairs plugged into a portal plug-in located at the back of their heads which takes them to an alternate reality to wage the battle of good vs evil. Since I am dwelling in metaphor land,  I also have a new ”Power Port’ and while I am in my chair, I am transported to a reality where my port is delivering life saving medicine that will give me super human powers just like Neo, Trinity, Tank and Morpheus, transforming this cancer and giving me more time to further expand on musings about life.

Without the blow-by-blow reprisal of the movie let me just move to the transformative end even though that means leaving out the appearance and the importance of those helping Neo along the way. No Hero’s Journey is complete without those important people in our lives. Our loved ones, friends and even those put in our lives to challenge the status quo…no we can’t forget any of them nor could we do it without them.

And so to continue my rather long and rambling narrative, Neo like Dorothy finds that when he is at his absolute lowest, he discovers the truth of what he is capable of, has been capable of all along. He finds the power in HIS ruby glass slippers and returns ‘home’. I think I might have to look for an actual pair of ruby glass slippers as a totem during my skip down the yellow brick road, as if I needed a reminder. Or maybe I need that cool computer program where Neo learns how to walk through walls, leap tall buildings and move with the speed of light. I have truly digressed with my update…

My port was inserted on Friday, no complications just sore and a bit bruised.  The hope is that now my life’s blood can be accessed for draws and infusions more easily.  I am also hoping that tomorrow the lovely nurse Shannon will have some good numbing agents on hand as I’m afraid I might resort to physical violence when she pushes a sharp object into my already bruised flesh. Thank goodness Jim will be along to keep me out of jail while continuing to be my rock, my love and reminding me that tomorrow is infusion #4 and the last one of it’s type.

Chemo #3 was harder on my GI tract than 1&2 and it seems that in the last couple of days my hiaital hernia might be reacting badly to the drugs that both kill the cancer cells as well as other fast dividing cells residing in the GI tract. Vignesh will order another PET scan in 2-3 weeks so we can see how well the magic medicine has been working.

That’s my update. I am getting used to my short thin hair and can now be seen in many of the scarves that have been silently hanging for years in the back of my closet whose new job it is to cover my funny looking port site…..my portal!

xo

A Very Merry Christmas

December 21, 2016

Good News…Good News! Chemo #3 is done, now waiting for the side effects to wear off and looking forward to a wonderful Christmas. More Good News – the last blood tests revealed that my counts are good.  My tumor markers have gone down, I have been pain-free for the last 3 weeks and Vignesh says I’m ‘rocking’ the chemo. I am so appreciative of the fact that he is supportive of my use of complementary treatments. I continue with acupuncture, Qi Gong meditation, long (and short) walks with Tess, supplements, anti inflammatory diet, energy healing and simply taking in the love and support being sent my way.

My brain is having trouble focusing so I will attempt to keep this short.  One more Carbo/Alimta infusion scheduled for January 10 then hopefully moving on to Alimta maintenance every 3 weeks depending on what the PET scan tells us. We will schedule that after chemo #4 on the 10th. I will also have a power port installed (sounds like I’m preparing for time travel) as my veins are rebelling. This will make it much easier for the medical team who cringe when they look at my tiny veins and I suffer through 4+ attempts to get a line in.

I send loving Christmas wishes your way along with my eternal gratitude for your continued prayers and good wishes. May we all be in awareness and give thanks for the miracles that happen, great and small, every single day.

XOXO

It’s Only Hair…..

December 8, 2016

 

…that’s what I said to myself whilst sitting in Jamie’s chair as she gave me a cute short bob. I haven’t had short hair since Lene was born which means long tresses for 30+ years. Hair has always been my thing and I was avoiding going short until I decided to also go grey – sometime in my 70’s or 80’s. But it was falling out and while I was promised I wouldn’t go bald, I was told that my hair would thin, and thin it has, hence the new do. I find that I’m not looking in the mirror as often lately. I am less concerned with my appearance and more concerned with checking in with my overall wellbeing.  I’m also not overly concerned with my weight or the size of my thighs. Now, I weigh myself in the morning hoping I haven’t lost more weight. Those extra 10 pounds I carried around for years…gone, plus some. Yes, my life has certainly changed.

Chemo #2 was more difficult than #1.  My infusions are usually on Monday’s and the nausea and fatigue usually don’t hit until Wednesday or Thursday.  Blood counts go down between days 7-14 and those days I am more susceptible to colds, flu and infection so I hole up in the house for two weeks. I then get a week of feeling almost normal before we begin again. Chemo #3 is scheduled for 12/19 meaning Christmas cooking this year falls to the other fantastic cooks in my family – I come out the winner on this one for sure, no qualms about turning over my kitchen.

On the medical front, Vignesh suggested we wait on scans until after chemo #3 and then do another PET to see how I am doing on this particular cocktail. If the cancer has regressed (or disappeared), we might do one more treatment or proceed to Alimta only maintenance. He is checking clinical trials and other treatment options if chemo doesn’t do the trick. All in all, this is a good report! I did have another CT on 11/18. Once again, I went to the ER with pain and once again, a pulmonary embolism was ruled out. These episodes have informed us that the tumor is not growing and my tumor markers are stable. I’m learning how do deal with the pain when it comes and am better at understanding the new intricacies involved in my medical journey.

Christmas has always been a favorite time of year and baking is one of my most favorite pastimes. Harmony and I are getting together next Wednesday for baklava, paximathia and caramel corn making so if you don’t want to miss out this year, give me a call. Jim has informed me that he cannot possibly eat all these sweets by himself so I’ll have LOTS of goodies that need a happy home.

Once again, perfect timing…baking week begins the week before chemo.

God does answer our prayers!

xoxo

Life is Like a Bag of Lettuce

November 23, 2016

I just took a 45 minute bath. Not just in any tub, but a tub who’s end I can just barely touch but only if I stretch with pointed toes. It was wonderful. This is MY bathtub, and I am grateful. I can take another bath tomorrow if I want.

As the warmth seeped into my body I began reflecting on Thanksgiving with cancer.

Am I thankful that I was diagnosed with cancer – not just any cancer but one that’s damn scary?

No, I am not thankful that I have cancer. I am however grateful for the eye-opening awarenesses that are presenting themselves. One looks at life differently when faced with the possibility that this  could all end, for real, like soon, not just ‘someday’. I am thankful that I can still cook and enjoy food. Now when I buy groceries, for which I am grateful for, I look for the expiration dates. Let’s take lettuce as an example.  I have been known to reach for the package at the very back of the display which can irritate those waiting to quickly grab their salad to go. I want to make sure that I pick a package that has the most amount of time left before it turns to green slime. I do this because I’m not sure if I’ll want salad every night for 3 days in a row and I want more TIME just in case.  And even then, how long will that particular package of lettuce be good beyond the expiration date? Maybe I can squeeze out a few extra days, who knows? So much for my cancer/lettuce metaphor.

That being said, we all have an expiration date. I wasn’t looking for mine. This is good and bad in the gratefulness department. I think I’ll keep going back to the store for more lettuce, there seems to be an endless supply.

I am grateful that the weather is changing and I can light a fire…in the middle of the day…and just sit and watch.

I am grateful for my family and friends, my medical team, my healing team, my support team, my family and friends (yes, I know I said that twice).

This might be TMI but after the first round of chemo, I am grateful for regular bowl movements once again…too soon? One must find humor when it comes to living with cancer.

I am grateful to, and thankful for, all of you that are reading this page. You are my peeps and my heart sings and cries because you are sharing this journey with me.

I am grateful for the LOVE that I connect with every single day.

And finally, I am grateful that we will be going to Fruita to share Thanksgiving with my extended family. I am sure that the food will be outstanding, the conversation lively and the hugs more meaningful. Someone knew what they were doing when scheduling chemo #2 AFTER Thanksgiving.

May you and yours have a blessed Thanksgiving. Let us not forget that even though the times are trying and full of mystery and uncertainty, we have so much to be thankful for.

xoxo

Chemo

November 15, 2016

 

One week (+) post chemo infusion #1.

Jim and I met with Vignesh last Monday, Mala draped around my neck, going over my options. An unknown is that since one of the cell blocks from the last biopsy had been damaged, another biopsy might be needed. It has been nearly 4 months since the tumor was found. The good news is that the tumor itself has not grown and there were no signs of any new tumors in either lung.  It does look as though the pleural effusion I experienced was possibly progression. Even though the amount of fluid is too small to aspirate, and I hope that it will resolve, it still looked to Vignesh like a strong possibility of progression. And so – chemo.  My super ninja oncologist has assured me that he is continuing to look and research other options. As he said, we can stop chemo at anytime if something better comes along.

Chemo is tough. No two ways about it. My next infusion is scheduled for November 28th and 3 weeks thereafter for a total of 4 possibly 6. I will have another CT scan before #3 and again after #4.

I continue doing the more gentle therapies as well which I know are helping my body adjust and heal. I have rediscovered Qi Gong, a practice I studied in Massage School 28 years ago.  Spring Forest Qi Gong is considered a healing practice. Similar to Tai Chi and Yoga but more disciplined in the art of healing. Qi Gong tells us that cancer is just energy that has become too much for the body, it must transform and the only way to do that is through love…how’s that for looking at something that is trying to take over my body!  What if I send it love? If love conquers all, why not cancer? Haven’t all the great spiritual masters said…AND THE GREATEST OF THESE IS LOVE?

My continued belief is that true healing comes from God, or the Universe, Love Essence or whatever name we give to that which is bigger than ourselves. Keeping that in the forefront is my goal every day and I’m doing my part to recognize and act upon what is being gently placed and at times thrown onto my path. Taking the time and finding something to be grateful for and joyful about is what gives my existence on planet earth meaning.

Life is terminal…what we learn, how we love, live and give along the way is everlasting.

I’m realizing that putting the thoughts that have been racing through my head a tangible place to exist is incredibly therapeutic. I continue to give thanks for your thoughts and prayers.

xoxo

And the Winner Is….

November 2, 2016

 

There were actually 7 mutations found from the 315 tested, but Vignesh chose to concentrate on one with current, ongoing research findings – NTRK1 Fusion. There is good news and bad news, the bad news first – there is not an FDA approved targeted treatment for this mutation ‘yet’, but there might be a clinical trial that I could be a candidate for.

The good news, the tumor residing in my upper right lung has not changed and no new metastases were found, YAY! How do I know it has not grown?  A bit of background:

Last Thursday morning while walking Tess, I had sudden onset of chest pain which lasted about 20 minutes. The pain felt the same as the original pain I experienced back in July. I called Kaiser and a chest X-Ray was ordered for that day. The radiologists could not rule out a pulmonary embolism and I was sent to Skyridge Hospital for a CT scan. Because I have a known reaction to the CT contrast dye, I was given prednisone and a shot of Lovenox and told to come back the next morning for CT with contrast. Pulmonary embolism was ruled out but there was a very small amount of pleural effusion which was determined to have caused the pain. The amount of fluid is so small they cannot aspirate the fluid for diagnostic purposes, meaning we don’t know if there are cancer cells in the fluid which could mean progression.

So where do I go from here.  Vignesh has sent the test results to Dr. Camidge and his team at UCHealth to see if there is an ongoing, or soon to be, clinical trial focusing on the NTRK1 Fusion, etc., being conducted at UC.  Jim and I will be seeing him again this coming Monday and we will discuss options.

There has been a lot in the news lately about new FDA approved immunotherapy treatments for lung cancer. Currently, the belief is that one needs to have a high PDL1 expression for immunotherapy to work and I didn’t have enough tissue left from the biopsy to test for this. We are instead relying on my TMB (tumor mutation burden) number which some believe is a better indicator. Mine is low and it’s unknown if immunotherapy will work or not. I will continue with change of diet, meditation, exercise, supplements, acupuncture, energy work and prayer. Every day, I continue to turn this over knowing full well that I am not in control, yet doing my part to enhance my overall health and well-being. The more research I do, the more I am informed that each and every cancer is unique to the person. Yes, there are similarities, but what treatment might work for one kind of cancer or even a mutation within that cancer, may not be effective for another.

And so my search continues. Instead of feeling dejected that a ‘known’ targeted treatment is not available, I am spurred on, continuing my education and expanding my knowledge base to include this new information.  The correct path will be revealed, of this I have no doubt.

As always, my heartfelt thanks for your prayers and positive thoughts, they are working in miraculous ways!

xoxo

Walking and Waiting

October, 13, 2016

I have been remiss in updating…The Free to Breathe Walk on October 2 was a huge success! Thanks to all who came out to support lung cancer awareness and raised funds to support research and patient programs.  There were over 600 total walkers and Team – The POSSIBILITIES, raised almost $2,500.00 with 40 team members! My great thanks to all who participated.

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Kate and Caitlyn brought over my Mala Project last Friday. Now that the tears have subsided, I have been able to look at and hold each and every beautifully intentioned bead. The Mala is exquisite! I am taking my time reading your cards and hold them near and dear to my heart. I know this beautiful piece of wearable art will help sustain me when I need bolstering.

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We are still waiting for test results…truly a lesson in patience. After the last biopsy, there was enough tissue to complete two cell blocks. My Oncologist suggested that we send one block to a company called FoundationOne where over 315 tests can be run to even further pinpoint what and how, my particular cancer is manifesting. If all goes to plan, we will hear back from them next week and then a treatment plan will begin. I am still praying that targeted therapy or immunotherapy can be used.  These last few weeks have seemed like the calm before the storm and I have been dedicated to taking advantage of the active moments.  In the past weeks, my symptoms have not increased and I have been feeling great. Green tea, turmeric, Omega 3’s and an anti-inflammatory diet along with acupuncture, walking, workouts, meditation and energy work have been my treatment of choice. I know that the healthier I am going into treatment, the better the outcome and I am committed to staying around for many more years.

I’ll update again when the results come in and we have a plan. Thank you again for your continued prayers and good wishes.

xo

 

A New Plan

September 16, 2016

We have a new plan! On Wednesday of this week, after much insurance/scheduling drama, I saw Dr. Camidge at UCHealth for a second opinion consult followed by seeing Vignesh (we’ve quickly moved to first name status) at Kaiser on Thursday.  We are all in agreement that more definitive testing needs to be done and so a tumor core biopsy has been ordered to determine my exact tumor ‘driver’.  The advances in finding specific mutations can mean treating with a more effective and less harsh ‘targeted treatment’. Down side to all of this is the extended wait time – another 2-5 weeks between scheduling and test results. The good news is both docs are very impressed with my overall good health (except for the cancer…) and my symptoms are stabilized and minimal.  If however, after the biopsy my symptoms get worse, we can do one round of chemo to knock it back until we get the test results.

All in all, I am feeling quite relieved since deciding on this next step. That’s not to say chemo is out of the question, but I still have hope that another path can be taken.  In talking to Drs. Camidge and Narayanan, I discovered that the fine needle aspiration (FNA) lymph node biopsy was great for diagnosing and staging but left too much room for false positives/negatives when it came to finding cell mutation and tumor cancer drivers. The science is complex, yet interesting and time-consuming and I am immersed in discovering all that I can. I continue with energy healing every day, walking, weight training 2 x per week (my docs were amazed I am still able to do this), and now acupuncture.

And so dear friends and family, I call on you for more prayers over the next few weeks. You have all already done so much and I know that your good intentions have played a significant role in my overall health and well-being. I cannot thank you – each and every one of you – enough for your continued love and support.

Onward….

Information Overload

September 7, 2016

OK then, here is what the latest round of test results has revealed: Negative for EGFR, ALK, KRAS, ROS-1, and MET gene mutations. There was not enough biopsy tissue available to determine RET or BRAF mutations or any others for that matter. Confusing that I do have an EGFR mutation but the alteration is not common or targetable to lung cancer. What is all the angst surrounding gene mutations you might ask? Check out the American Cancer Society website on Lung Cancer (Non-Small Cell) Targeted Therapies. The advances in this type of treatment is very exciting, unfortunately, I am not a candidate at this time.

Dr. Narayanan, my oncologist who calls me ‘Mrs. Dennis’, has suggested 3 possible courses of treatment. I’ve got to get on a first name basis with Dr. Vignesh Narayanan, aka whiz-kid-super ninja-most wonderful oncologist, however I’m old enough to be his mother and this level of familiarity might take some time. Anyhow, Vignesh has suggested 3 possible courses of treatment:

1: Standard of Care chemotherapy which is a combination of 2 drugs, Carboplatin and Alimta. The suggested protocol is 2 cycles followed by a scan to see if it is working. If yes, then 2 more cycles and another scan. If this scan shows that my disease is stable, then I would have maintenance treatment of Alimta every 3 weeks. This goes on indefinitely if I remain stable but if there is progression, we would re-biopsy and move to next generation sequencing and FoundationOne testing.

2: There is a clinical trial being offered at Kaiser that is a randomized trial involving two regimens. The first being a cocktail of Carboplatin, Taxol and Avastin, and the other being Carboplatin, Taxol and immunotherapy. The downside would be that I would not know which of these cocktails I would be getting, plus a possible second biopsy and waiting to see if I get accepted into the trial all of which would add at least another 5-6 weeks before starting treatment.

3:) Get a core tumor biopsy and start the process of more in-depth genetic testing. Again, 4-6 week wait time.

When I asked what he would suggest if I were his Mom, he said #1 – Standard of Care. He’s not keen on waiting any longer to start treatment as the upper chest pain has returned. Will there be side effects for any of these treatments?   Yes.

Will I be incorporating complementary treatments such as acupuncture and supplements that support my body while doing treatment? Yes.

Will I be looking into CBD research that is shown to diminish symptoms and possibly enhance cancer cell destruction? Yes (thank goodness we live in Colorado).

Will I lose my hair? No…thank goodness for small favors.

Next Wednesday, I have an appointment scheduled with Dr. Camidge at UCHealth for a second opinion and then Thursday back to Kaiser to let them know what direction I have decided on. 

I’ve spent the past 2 weeks doing endless research and have decided that staying the course is my best line of defense. I will continue to keep to a healthy diet rich in vegetables and fruits while eliminating all processed sugar and gluten. I am incorporating some yoga type breathing exercises, walk for 1 hour every day and weight training work-outs 2X per week. 

Am I seriously considering chemotherapy treatment? Yes, I am. I have always said, one never know’s 100% what you would do in this scenario unless actually faced with making this choice. I keep coming back to the fact that I truly believed that I was already doing the right things to keep my body healthy and dis-ease free. There are unknowns that play a roll in our health and well-being that we cannot always account for. In the face of this, I must go with my gut and believe that I am divinely guided every step of the way, which of course, I believe beyond a shadow of a doubt.

Thank you for your prayers, calls, emails, good wishes, lunches, play dates, healing sessions and positive thoughts. Your concern and support is honored and appreciated more than I can say. Those of you who know me well are aware that I look at this challenge as a spiritual journey even more so than a physical one. Every day I am struck with how spirit moves and guides us to become aware of the perfection in every moment. My motto borrowed from Anita Moorjani – ‘Live Your Life Fearlessly’. Sending my love…

Dis-jointed-ness

August 28, 2016

What we know so far is that I do not have either of the three most common gene mutations EGFR, KRAS, or ALK. Testing for other possible mutations is still being done and we should hear something this week. I was assured that targeted treatment and immunotherapy are still possibilities depending on what other mutations might be found.

Last Sunday was the Race for Research and the walk had a completely surreal feel to it. I am now one of those faces of cancer. How can that be???  For those of you who have urged me to look into the website ‘The Truth About Cancer’, I have been watching the videos. To say that I am even more confused by what my choices are is an understatement. However, I know when more than one  suggests…

It has been a full and slightly disjointed week. I tried paddle boarding on Monday for the first time. Friends are making sure I have plenty of opportunities for walks, coffee, lunches and unpacking. Having my parents in town for a few days was wonderful. Singing last night was difficult and beautiful all at the same time. My thoughts are running amok and yet I am also centered. I’d like to believe that I am a fairly stable person but this space I am currently occupying is completely foreign to me. A friend and client who has successfully dealt with multiple myeloma for the past 5 years said to me, ‘Cancer is an amazing teacher. It will teach you much in ways you cannot predict.’ What am I being taught today and every day for that matter? Let Go, Trust and Live in the Moment. This ONE MOMENT contains all possibilities. Oh, and I am re-reading a book that I read a couple of years ago called ‘Dying to be Me’, the significance astounds me.

I did say that my thoughts have been slightly disjointed – didn’t I?

The First Thirty Days

July 19, 2016 

Living with the unknown…July 19, 2016 found me in urgent care and then the ER because of pain when breathing. Specifically when lying down or taking a deep breath. Chest X-Ray and nuclear CT scan, found something in the upper lobe of my right lung. The ER doc said the word tumor and I don’t remember much else.

July 21, 2016

Still unknown at this point, until 1:30 when we see the pulmonologist. One thing is known, I have a mass in my right lung, upper quadrant approximately 1 inch in diameter, I am 57 years old (58 in 16 days) and I’m not ready to – what? Die, fight, make horrendously difficult decisions, worry about every breath I take, answer questions that I don’t know the answers to, ask questions that others don’t know the answers to??? 

Best case scenario, it’s benign. In the past 2 days, I have come up with every possibility I could think of believing that if I cover all the bases then I won’t be surprised at the diagnosis. Please God, let it be benign.

August 2, 2016

After 10 days of antibiotics, another X-ray showed no improvement. Next is a lymph node needle biopsy, PET/CT and MRI. 

August 19, 2016

The needle biopsy report came back – NSCLC adenocarcinoma, stage 4 – lung cancer. As Lene says, there is an unwanted squatter residing in my ‘lung AirB&B’. The unknown is how do I best assimilate this information and then, how do I go about challenging this interloper that has stayed so well hidden, existing undetected. I have followed a healthy lifestyle for years. Smoker? The occasional cigarette over the years. A non-smoker is considered someone who has smoked less than 100 cigarettes in a lifetime, that would be me. The research tells me that the type of lung cancer I have is the most common form diagnosed in women and non smokers.

Having worked in complementary healing for almost 30 years I am, of course, getting lots of information from friends and peers regarding alternative methods for a cure. I truly appreciate everyone’s point of view and well-intentioned advice, in fact, I welcome it. And, I welcome discovering how orthodox treatment is evolving and the great strides taken in research and treatment options. 

When we are challenged with different beliefs, we tend to gravitate to that which validates our subjective experience. I am beginning to understand on a much deeper level that true courage involves questioning our beliefs and bridging middle ground. Third dimential reality exists in polarity. The pendulum swings to extremes and I am seeing it everywhere from politics, to religious beliefs, to environmental standards, to relationships, to the alternative/orthodox medical community, etc. What I do know is that whatever direction I take I must COMMIT 100% of my energy to my path and pray that I can be strong in my belief that all the pieces combined together make up the WHOLE.

This afternoon I have my first consultation with oncology. I have been reading up trying to educate myself on the words that I will be hearing today. The gene mutation testing should be complete sometime next week and I will wait on those results before deciding on treatment. That is the only DEFINITIVE course of action I am taking right now besides forming my team of medical doctors, alternative practitioners, prayer warriors and supporters who have my back when I get weak as well as when I am strong.

I am reminded of the jigsaw puzzle piece that we lost years ago and then found when we changed the carpet at the Krameria house. The jigsaw puzzle is now complete, a piece was lost for a time which created imbalance in the picture. I’m on a mission to find the missing piece, the missing link if you prefer…How’s that for a metaphor!

August 20, 2016 

Dr. Vignesh Narayanan, MD. is my oncologist. We liked him. Not only did I feel listened to, I felt like he truly knew what was going on and how best to move forward. No treatment plan yet. There was some fluid left over from the lymph node biopsy to test for possible mutations. Dr. Narayanan promised to call the pathologist every day to put a fire under them. Depending on what they find or don’t find, l might still need another biopsy. This one CT guided going through my chest wall and into the largest tumor. This information will give a more complete picture of my specific cancer and how it is manifesting as well as additional information on gene mutations and the possibility of targeted treatment. Oh, and how’s this for the universe/God stepping in to guide my way: when I told my doc that I would be getting a second opinion from Dr. Camidge at UC Health, who also happens to be world-renowned in the lung cancer field, he said ‘I know Dr. Camidge well. He IS the best and I worked with him for 2 years! I feel so relieved knowing there can and will be communication within my medical team. There are no accidents. This next week we continue to wait…

Living 3-4 Months At A Time

June 20, 2018

Last Thursday, June 14, I went for another PET/CT and Brain MRI. I hadn’t had a PET/CT in 4 months or a brain MRI in 16 months and even though I have been feeling great, there is always that voice in the background noise of my mind that pointedly questions :  “What if” ?   I mostly try and ignore this voice as it can be a precursor to anxiety, but I do better when I recognize, confront, discuss, accept, adapt and move on, my mantra when the ‘what if’ voice is ridiculously loud.

* ‘What if’  there is metastasis somewhere that I can’t ‘feel’?  I haven’t experienced pain, shortness of breathe, cough, headache, etc., all symptoms to watch out for, but blessedly missing. How I’m feeling is the only measuring stick I have so scans and tumor markers are validating.

* ‘What if’ the cancer has become dormant? Still lurking and hiding, waiting for an opportunity to change and grow.

 * ‘What if’ the cancer truly is gone? Yes, please, I like this ‘what if’ the best. Generally speaking, NED (no evidence of disease) and stable are as close as most medical folks are willing to verbalize for stage 4. That’s ok, I know what I know.

My PET/CT results were the best to date.  All previous metastasis is gone, and has been since last August. The primary nodule in my upper right lung now measures about 10 mm, less than .5 inch, smaller than a dime (I measured), with no metabolic activity. This would indicate that the nodule is either scar tissue or dormant. I think it’s dead and slowly being absorbed millimeter by millimeter. The slight bi-lateral pleural effusions are smaller now that I haven’t had Taxotere for 9 weeks and the brain MRI was clear. 

WHEW! YAY! AWESOME! THANK YOU, GOD!

3 more months before we check again. In my previous life, I don’t know if I would have considered this ‘quality’ of life, the constant wondering, checking for and responding to my hyper vigilance. But even with the added challenges, continuing to live gives me time to discover more beauty, more love, more awe. This in and of itself is particularly amazing and I am grateful. 

A new piece of the puzzle is that we found I have a very low Vitamin D level.  This was the first time we had tested for this and I asked for the test after I had heard of others in the lung cancer community showing low levels. In researching, it seems like a common finding in most cancers as well as a possible side effect of chemotherapy. But, having low levels might also put one at a greater risk for developing cancer.  

Here’s my public service blast regarding Vitamin D:

8 signs and symptoms of vitamin D deficiency.

  • Getting Sick or Infected Often. …
  • Fatigue and Tiredness. …
  • Bone and Back Pain. …
  • Depression. …
  • Impaired Wound Healing. …
  • Bone Loss. …
  • Hair Loss. …
  • Muscle Pain.

8 Signs and Symptoms of Vitamin D Deficiency – Healthline

https://www.healthline.com/nutrition/vitamin-d-deficiency-symptoms

Was I deficient before I was diagnosed? I could say yes to some of these symptoms pre diagnosis and yes yes to other symptoms since diagnosis/treatment. 

Now, how do we get enough Vitamin D? And should you take D2 or D3? What about Vitamin K? How about calcium? Supplements or food? How much sun sans sunscreen?

The info is quite extensive so if you are interested, please follow the link.

https://www.vitamindcouncil.org/about-vitamin-d/how-do-i-get-the-vitamin-d-my-body-needs/

For me, I’m taking 50,000 iu’s once per week for 12 weeks, then we take another blood level. Hopefully, my numbers will have moved from 15 to 50 and I can then stay with a maintenance supplement, along with making sure I get plenty of sunshine and eat my fish, cheese and eggs.

What’s next on the cancer treatment front? Continuing with Ramucirumab for 3 more cycles and then yes, re-scan. I want admittance to the “Exceptional Responders Club”.  It might take a few more years but I’m practicing pounding on the door.

Changing the conversation from ‘What If’ to ‘Why Not’. 

Seems plausible, and doable… without a doubt.

xo

Easter and April Fools Day…How Ironic

April 1, 2018

Three weeks after I turned 18, I joined my version of the circus. I boarded a Chevy Econovan and headed for Oklahoma with a Christian acting company headquartered in Los Angeles. Not everyone on the van was a complete stranger, I did know the tour leader, Gary. He grew up in the same church I did. Gary was several years older than I but we knew his family, they were good people and I felt safe and excited to be going on not only this adventure, but this mission.  I didn’t stay with this group long as they sent me back to LA to join a singing group that was scheduled to tour the southwestern US and after 4 months or so, I then joined another acting group touring Indiana and Illinois.

There are things that I experienced in the year I was with Covenant Players that I most certainly have forgotten, but many I remember. One memory that has left a lasting impression is a performance we did for Easter. The evening consisted of a grouping of 3 solo soliloquies, mine was portraying Mary, the mother of Jesus.  Being only 18, I found it difficult getting into the role of a much older, heartbroken and devastated mother. What did I know about losing a child? While legally an adult, I was still very much a child.

I have thought about this performance almost every Easter since. Never when I was preparing for my Mary performance could I tap into what it would be like for MY parents to lose a child. After 41 years of additional experience, as well as having the joy of being a mother, I now know I could finally do justice to Mary’s story. I understand now and I share this painful possibility with my parents. Before this gets too morbid, let me say that my scans, tumor markers and blood counts continue to be good! But today, I am reminded of the circle of life…..and death.

When we were kids, Mom made my sisters and my Easter dresses and usually a vest for my brother. She curled our hair, polished our shoes, pressed our clothes and Dad hid the Easter eggs.  He might have had the more difficult task as they have lived in the same house for 60 years and there are only so many hiding places. He became very creative, sometimes too creative for Mom’s taste. The day began with Sunday school followed by church services and then Easter lunch at one of my grandparents houses where my cousins and I would play most of the day. Priceless memories. When I was 22, I married my Greek Adonis and now I celebrate two Easter’s, you know ‘regular’ Easter and Greek Orthodox Easter. Yes, Easter has a special place in our lives, I doubled up to make the holiday even more poignant it would seem.  But what does Easter mean to me?

It’s about death and resurrection, right?  In our modern era we have tempered the holiday with the Easter bunny, chocolate eggs, Easter bonnets and ham or lamb, depending. Back to death and resurrection. For many years, I kept a safe distance from tapping into the suffering I imagine Christ must have experienced. How extraordinary to traverse from betrayal – to forgiveness, from humiliation – to humility, from physical suffering – to surrender and from struggle – to acceptance. I am very aware of my own questioning, my own pain and my own fear of surrendering.  But, why have I been so adamant that surrendering is to be avoided no matter what? Does surrendering mean failure? By dying do we admit defeat? What exactly would I have failed at?

This year April Fools Day and Easter fall on the same day and I offer this for you to consider:

Dying is to be avoided at all costs….April Fools! 

If I die then I FAILED…April Fools!

Pain and suffering should be avoided, at all costs…April Fools!

Hey! They say I have a terminal disease….April Fools!

If I die, then I will cease to ‘live’…..April Fools!

I think there is some brilliance to this approach.

You see, what I know deep in my soul is that no matter what happens, I WIN. I am not afraid of death. I hold a very strong belief that death in this third dimensional reality simply means transformation. We are energy, pure and simple. God is energy. God is light. God is Love. I will return home. We are majestic beings and I am doing my utmost to realize this. But, surrendering to death means saying goodby to this life and this life is a precious gift. Life is to be revered and honored. This is important to me. Life is brilliant but physical death is imminent, for all of us so it seems.

I will be watching ‘Jesus Christ Superstar’ tonight. I will be singing along because I still know all the words and this musical is incredibly memorable for me. Easter and April Fools Day….God definitely has a sense of humor.

Wishing you grace this Easter and Passover.

xo

Woman’s Best Friend

Lung Cancer Awareness Month

SOME DAYS ARE BETTER THAN OTHERS.

*Monday was infusion day which means today is day three post chemo, typically my worst day. I remember watching ‘Step Mom’ years ago, you might remember it –  Julia Roberts, Susan Sarandon, and Ed Harris starring in this Hollywood dramady featuring Isabell (Julia) as the soon to be step mother, Jackie (Susan) as the bitter ex and Luke (Ed) caught in the middle. I remember liking this film. I thought it had a great story line, the acting was excellent and a redemptive if sad ending. What has stuck with me are the scenes of Jackie reeling from her chemotherapy treatments. Sleeping on the bathroom floor to be close to the toilet, barely able to get out of bed. Every one is different and even though I’ve never had to sleep on the bathroom floor, I have had my moments.

On day three I feel tired, a bit nauseous, and somewhat sad. Over the past year I’ve tried to find ways to mitigate the day three slump. Today, I had acupuncture and exercise helps tremendously so Tess and I walk. She’s my willing walking partner any time of day for however long I want to go. Sometimes it’s just necessary to let myself slide down the slippery slope and I’ll stay in my pj’s listening to sad songs, writing, remembering, planning…just feeling. I set a limit on those days, telling myself I can come back when I need to feel more. There is healing in feeling.

Mostly, on day three I need stories with happy endings. And a trusty dog.

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More Good Than Bad

May 18, 2017

Let’s get the ‘bad’ out of the way. Hair….mostly gone, the grey ones are hanging in there. Mouth/tongue/throat sores….sorta gone. I sucked on ice cubes while receiving my second infusion this Tuesday in hopes that the vasodilation will help ward off the worst upcoming offenders.

Sense of taste…totally gone, I hope not forever, I actually like my cooking and baking and strictly eating food for nourishment requires more mental fortitude than I dreamed possible.

Now for the good.  I have an awesome wig which I wear when I need to change-up my Sinead O’Connor/Demi Moore-GI Jane look. Stacey, Kellie, Harmony and Georgia were by my side cheering me on as Hana (Hana Designs specializes in wigs for cancer patients) buzz cut me and styled my new long tresses. A cool new hat that has UV protection followed by lunch and I felt totally uplifted and supported…my heartfelt THANK YOU ladies.  I also give thanks to whomever donated, or more than likely sold their hair, so I could look in the mirror and see a somewhat familiar image looking back at me.

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My broken knee sisters from around the world sent me an AWESOME hand-made silk scarf and photo book to remind me of our meet up in Chicago, October of 2015 and to let me know they walk beside me on this journey.  Thank you SSBAL sisters.

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Thank you’s and hugs for the lunches, dinners, walks, concerts, phone calls, energy healing, emails and cards that have kept my spirits high and my body strong.

To Stacy and Jay Montgomery who invited Jim, Lene, Jason and I to sit at their table at the Colorado Cancer League Gala in honor of our dear Kaylene…it was an honor and a privilege to attend this amazing event. And we got to get dressed up! That automatically raises a girls spirits.

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And my dear brother-in-law Vern, who will ride his bike in my honor this weekend in Portland, OR for the American Lung Association’s ‘Reach the Beach’ bike event.  Vern is living cancer free after his own battle with colon cancer. He is a tremendous inspiration and had it not been for chemo on Tuesday, we would have been there supporting and celebrating with him. A very public THANK YOU fellow warrior, friend and brother.

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My next PET/CT scan is scheduled for June 2. Asking for your prayers that this new regime is working. My blood counts were good this week and tumor markers continue to decline, all good news!

We are still appealing the Kaiser decision on Afatinib. I should hear back from them in the next couple of weeks with their 2nd appeal decision. If they turn me down again, I have a better chance of getting the drug manufacturer to reopen my case.

Because lung cancer needs a light shown on it’s lack of funding, I will be walking in 3 cancer research walks this summer and would love to have you participate with me.

      *The first is the Lung Force Walk – June 10 at the Denver Botanic Gardens – Chatfield Farms.  Register at www.LUNGFORCE.ORG/WALK, our team name is ‘The Possibilities’.

      *The second will be the Cancer League of Colorado – 5K Race for Research. Sunday, August 20 at Washington Park. This will be my 5th year walking. For information or to register: www.cancerleague.org.

      *And the third will be the ‘Free to Breathe’ 5K walk. Sunday, October 1 at Washington Park. http://participate.freetobreathe.org/site/TR/FreetoBreatheSignatureEvents/General?pg=entry&fr_id=359… . We are putting together another amazing ‘The Possibilities’ team this year!

As always, I am sending my love and gratitude for your continued prayers, good thoughts and positive energy. Life is good and Love is simply the best!

xoxo