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”. 

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.

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?