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.

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. 

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

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.

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.

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

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!

October 16, 2018Just 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.

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.

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.

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:

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.  

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.

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.

After 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.      ∨                              ∨                         ∨                                 ∨                         ∨

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

It’s been two years. Two years! 

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)

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

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….

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…

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?

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…

xo

Lung Cancer Awareness Month

SOME DAYS ARE BETTER THAN OTHERS.