“What’s In Your Wallet”…er… Junk Drawer?

June 4, 2024

I’m sitting down to write an update and my mind wanders because I am struggling with how to begin and I have lots to share.

“Dang! I forgot to freeze that left over tenderloin from the other night.” And up I jump to the refrigerator. Tenderloin transferred to a freezer bag but I really should write the ‘frozen on’ date on the bag. “Now, where is that Sharpie…”

The kitchen junk drawer of course! The first Sharpie was dry, hmmmm, looks like the cap didn’t make it back all the way on after it’s last use. There’s another one in here somewhere… I’ll pull out the drawer just a little further. Wow! This drawer is deep, it just keeps going and going. Huh, there’s a lot packed in here…

It’s been a few years, eight to be exact, since we moved in and I don’t think I’ve done anything with this drawer except continually shove things into it that I don’t know what else to do with. No time like the present! I pour myself another cup of coffee and dive into the kitchen junk drawer. This is what I discovered, which is currently displayed on our breakfast nook table for all the world to see:

Nineteen packets of fresh flower food, four rolls of scotch tape and one of masking, four packets of wildflower seeds, seven keys of unknown origin, two straight edge scrapers, two boxes of matches, five pairs of scissors, three mini flashlights, a door stopper, five lighters, four measuring tapes and one straight edge ruler, two jigsaw puzzle pieces, multiple refrigerator magnets of all shapes and sizes, an empty glasses case, pens, pencils, sewing needles, thread, safety pins, and rubber bands. A marble, a luggage tag, a nail file, a broken chain, a staple remover, six two cent stamps, a glass bead, three pencil sharpeners, a pair of tongs, a wine opener, assorted batteries, a yellow highlighter, a pair of reading glasses, various business cards from people I have no recollection of, and a twenty-five year old Texas Instruments hand held calculator (that STILL works!!). 

What’s missing though is a working black Sharpie.  

Now that the chaos in my mind is now resting on the table in front of me, I can share that I had my three month follow up CT scans and brain MRI in early May and the news is still very good. I am managing the side effects of treatment well, gaining back the weight I lost, learning how to manage my chemo curls and planning cataract surgery. I will repeat these same scans in August and until then I plan on enjoying my summer. My yearly echocardiogram and blood lipid tests were good as well. Other than the insurance discrepancies from a year ago challenging my serenity, it looks as though there has been no residual damage from the Takotsubo Cardiomyopathy event I experienced last May.

May was definitely a busy month. On the 2nd, I testified before a Colorado State Senate committee in support of Biomarker Bill SB24-124 and on June 3rd, I joined with other ACS CAN advocates, survivors and bill sponsors at the Governor’s Mansion as Governor Polis signed the bill. Truly a special moment for me as well as many others. I’ve shared the American Cancer Society, Cancer Action Network’s press release link below if you would like to read my comments and an explanation of the bill.

On May 11, I celebrated with other lung cancer survivors at the University of Colorado Cancer Center’s 5+ year Survivorship Celebration. We were treated to a very moving event with heartfelt and poignant talks and gift of sublime music by Dr. Patil on the piano. 

June looks to be somewhat calmer and my dance card will be filled with catching up with friends and spending as much time with our daughter, son-in-law and of course, Benjamin who is growing by leaps and bounds as he explores all the surprises and magic found in a three year old’s world.

Now I must return to my kitchen junk drawer. Finding metaphor in every day life, I am reminded of eight years ago when we moved into our current home and how excited we were to be taking on this new adventure. The yard was craving loving care and we had completed most of the remodeling on the inside. Never in my wildest dreams could I have imagined that our lives would be shaken to their cores in a matter of a few weeks. Some of the resurfaced items will once again go back in to this handy drawer because I don’t want to try and remember where I might have relocated the scissors, tape, measuring tapes and a lighter or two. But most will be repurposed or discarded. Such is life.

Our lives look very different today than they did eight years ago. Much has been lost and much has been gained. I’ll do my best to make room and prepare for the new to arrive while taking my time saying farewell and thank you to what no longer serves, allowing for completion and making the new hellos that much sweeter.

I will however say a quick and hearty heave ho to at least three quarters of the fresh flower packets. It’s time for a fresh beautiful bouquet… and a new Sharpie.

Link to press release – https://www.fightcancer.org/releases/bill-increasing-access-biomarker-testing-certain-coloradans-becomes-law

https://news.cuanschutz.edu/cancer-center/lung-cancer-survivorship-celebration-2024

Chances Are

Photo by Anna Shvets on Pexels.com

February 6, 2024

Have you ever had that feeling when you just know that something good or bad is about to happen? That intuitive hunch of someone or something whispering in your ear….”hold on, it’s going to get bumpy” or “hold on, it’s about to get exciting.”     I’d venture to say that we’ve all had these intuitive hits at one time or another. It’s a reality of the human experience.

I’ve had a couple of experiences like this in my life, a premonition where I just knew the outcome of an event that was just about to happen. The first time that I can remember this feeling was when I was quite young. There was a carnival hosted by our town’s Lions Club and my siblings and I were each given a couple of dollar’s worth of tickets that we could spend on whatever games of chance the carnival had to offer. Knowing how much a dollar meant, I walked the floor searching for where to place my bets, tickets clutched tightly in my hand. I felt drawn to the roulette wheel and stood to watch how this game of luck and chance was played. Feeling like I understood the rules, I traded two of my tickets for a red paddle with a white number painted on both sides. I wish I could remember the number on that paddle but the surety escapes me. After the roulette wheel was spun, I had the experience of standing outside of myself. I watched as the roulette wheel spun around and around and I just knew that it would stop on my number. I felt knowing in a place that was calm, confident and very sure, as if it had already happened. This place had no time or space or age and yet if felt very much like me. 

The wheel landed on my paddle number and I had a choice of prizes. I picked a large beautiful plastic appaloosa horse. He (I knew it was a he) was prancing and majestic and I loved this horse for years, even though at some point his front leg broke and his shiny coating became scratched and faded. The adventures we would go on in my mind were wondrous and he became more than a toy, he was my friend who accompanied me on imaginary rides through far off lands, my friendly reminder that there is a place where knowingness resides and chance deems you worthy of taking a chance. My friend was eventually replaced by vinyl records, hair brushes, bobby pins and a diary, relegated to the toy box for future grandkids to enjoy. Eventually, I heard that he was discarded, his broken leg deemed a potential safety hazard.

The second time I remember this kind of experience happening I was again at a Lion’s Club event while visiting my parents as an adult and I won a chocolate cake. This time it was like “Hey! Remember me?” Again, I just knew my number would be called. Chance had once again appeared in my life and I was reacquainted with that profound sense of knowingness. I need to add that there have been other experiences mainly related to others or in conjunction with others. I think that most of us have had those moments when we thought about someone and then they called or we knew who was on the phone before we answered (obviously pre caller ID because we’re talking synchronicities here). When it came to my twenty-six years as a massage therapist and healer, I could often pick up on the energies surrounding someone else but these experiences were different, very different. They didn’t have the ‘this is for YOU, Peggy’ message engraved on a bright orange sticky note calmly existing in a space of serene certainty.

I’ve shared before that when I received my cancer diagnosis it felt like a cosmic sledgehammer had just sucker punched me from out of left field without any heads up. My knowingness seemed to have failed me, leaving me in the dark without an emotional roadmap. I truly believed that something as serious as stage four cancer could never sneak up on me. I had been doing my work of healing the deep dark places inside for many years and believed that I had an affinity for knowing the unknown. 

Without a road map and emotionally devastated, I had to rely on the people chance placed in my path. I began learning how to trust someone else’s knowingness which freed me up to begin looking at deeply buried fears and committing to living life (no matter how much I had left) on my terms. It can be terrifying when uncovering those fears. The worst part is just before the dirt comes off, right before light illuminates the totality of what’s been buried. I find it amazing that the fear of what has been buried is often much worse than the reality. I began by looking death in the face and asking ‘who are you and why am I afraid of you?’ For that matter, ‘who am I?’ My motto has been ‘I don’t want to leave before I’ve completed what I came here to complete.’ My prayer and what I know will happen is that I will know when that time has come… it’s just not today and probably not tomorrow or the next day because after twenty-eight days on treatment line number eight, we know that it’s working. 

Last week I had another brain MRI for radiation treatment planning. I also had the mold for my thermoplastic radiation mask done along with the CT simulation scan for SRS (stereotactic radiation surgery) which was to take place in 10-14 days. The trifecta was a follow-up Chest/Abdomen/Pelvis CT scan. The next day a call came in from one of the radiation oncology docs and within that split second before I answered my phone my old friend knowingness made a reappearance: “I’m baaack!” I knew Dr. Nasr would be sharing that after reviewing my scans, the consensus of my oncology team was to wait on SRS as the new treatment was working extremely well on the brain metastasis and the stable areas in my body remained stable to a bit better. 

Hello my old friend…and welcome.

I had an appointment with Dr. Patil this morning and the smile on his face was priceless when he walked into the room. He’s not only a gem of a human being, he’s brilliant and compassionate and a maverick in his chosen field. What I recognize in him that resonates with me is his willingness and ability to act using the knowledge he has and the inspiration he receives … and his being a musician which is the icing on the cake in my book. He was the one who suggested that taking a chance on Mobocertinib was worth pursuing once Enhertu failed. Mobo worked  for nineteen months, a good run when it comes to advanced lung cancer. He also was the one to suggest that Tagrisso might be worth a shot and made the necessary calls. Both times he looked at me and said, “I don’t know if this will work but there’s a chance that you could get a good response.” Then he waited to hear my decision for I get final say. Trust is imperative in a doctor patient relationship and he’s well aware of what I’ve experienced the past seven years and seven months. There is also honesty on both our parts as well as respect for the knowns and unknowns of this disease. I asked to see the MRI and CT images and the differences after twenty-eight days was nothing short of incredible. We will scan again in three months.

Knowingness takes many roads as it makes its way to our conscious awareness. Taking chances requires a change in course, red pill-blue pill,  choosing which road less traveled we will take into the unknown. Choices walk hand in hand with chances. As I shared, I truly believe that I will know when it’s my time. It might be within a split second or it might be, ‘I’m not doing this anymore. I’m ready for the next adventure.’ 

For an adventure it will surely be. I know this.

New Year – New News – New Plans

January 9, 2024

Did you see the fireworks? Did you feel the energy shift from one year to the next? Did you say goodbye to 2023 with gratitude or regret? Did you welcome the New Year with optimism or pessimism? Are you ready?

Ready for what? I’ve been gazing through the looking glass seeing a familiar world that is somehow, once again, turned inside out. 

There are many changes that culminated for me at the end of 2023. After spending hours on the phone over multiple days followed by three hours waiting in line at my local Social Security office, I am now officially a Medicare recipient! Turning sixty-five at one time seemed like an event that would take place in a distant future that I would somehow be better prepared for. While on the phone listening to irritating music and repeated messages telling me that I could always “go to the website” I wanted to yell at someone…anyone…so that I didn’t have to feel the emotions boiling up inside of me. I found my frustration morphing into anger at the unfairness that aging can at times seem to inflict upon us. All said and done, everything fell into right time and place and I re-committed to focusing my attention on living life to the best of my fluctuating abilities, whatever that looks like, grateful that I made it to sixty-five.

Big change number two – after over thirty years, I also am no longer a Kaiser Permanente member. As of January 1, I began receiving my care at the University of Colorado Cancer Center under the expert care of Dr. Tejas Patil who was my oncologist during my clinical trial on Enhertu. I am in excellent hands and I am comfortable with the decisions I have made. Embracing the unknown, as every cancer patient knows well, can take a toll on our mental and physical well being. Living with a cancer diagnosis has opened my awareness to the possibilities of what could and can be. Learning to look forward with awe to what is yet to be discovered and who I will meet along the way continues to be enlightening as well as fulfilling. I look forward to taking these next steps with my new team at UC Cancer Center.

Compounding the timing for this switch was a second brain MRI on November 27 confirming the cancer has metastasized to my brain. Life changing, yes, but it can be dealt with. I have come face to face with similar challenges in the past. Dr. Patil gave a referral to the amazing Dr. Sana Kamara, radiation oncologist and professor at UC, and a plan is being developed. I will be getting more scans in the next few weeks and we will go from there. Right now we know that the brain lesions are all sub-centimeter and hopefully can be addressed with SRS (Stereotactic Radiosurgery).

Another challenge has been that the drug I have been receiving for the past nineteen months is being discontinued by the drug company. This has been a shocking blow to those in the EGFR Exon20/HER2 community as a potential line of treatment will no longer be available. The drug company has promised that those who are currently taking Mobocertinib and doing well will have access through compassionate use for as long as needed. The good news is that there are new drugs in the clinical trial pipeline which will hopefully fill the newly created gaps in treatment options for this lung cancer sub-group, yet another example of living with the unknown.

Where do I fall in this scenario? I am now taking a chemo drug that has better known efficacy for passing through the blood brain barrier (BBB). We will continue PET/CT scans to determine how the new treatment is working and monitor available clinical trials that I might qualify for if/when I need other options. I find that resiliency is once again called for. I will see Dr. Patil next week and we will update plans. In the meantime, I want to thank my friends from all over the cancer community, research, pharma, patients and advocates who have offered advice, suggestions and overall support as I meet another obstacle. I am inspired by you and grateful for you.

So 2023 has ended with a BANG! All things considered, I think there is reason for hope. Seven and a half years ago, statistics said that I wouldn’t be here today, but medicine and magic are working beautifully! 

My best wishes for you and yours in the New Year!

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!

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/

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.