Tag: cancer and COVID-19

It’s Raining, It’s Pouring

May 1, 2020

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

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

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

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

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

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

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

Stay safe, stay hopeful and stay loving.

Our New World

March 23, 2020

Surreal

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

Definition of surreal

: marked by the intense irrational reality of a dream

also : UNBELIEVABLE, FANTASTIC

*Merriam-Webster*

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

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

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

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

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

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

Don’t believe me? 

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

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

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

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

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

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

Stay well.