COVID is a thief.

The last few weeks have I have found myself at yet another crossroads of my cancer treatment.  While pondering options for the next line of therapy, I also think about the last five years living with fallopian tube cancer, two of which have been in the throes of a global pandemic. 

When I was first diagnosed with late-stage fallopian tube cancer (like ovarian) it took me about 15 minutes to figure out that my prognosis was poor and my chance of being alive in 5 years was sketchy (the official stat for my late stage is around 20%). 

I had already lived through another cancer – lobular breast cancer -which was diagnosed 5 years earlier.  I already knew exactly what surgery and chemotherapy and radiation meant and its impact on quality of life because I had lived it before.  My gut response when I first discussing treatment with my gyn-oncologist was to fiercely protect my quality of life – mobility, independence, mental functioning, relationships and friendships – when making treatment choices – first and foremost.  And second I knew I had to live life as much as possible in the time I had left, which to me meant traveling and exploring, spending time with friends, walking every day and being in nature and importantly – doing my best to contribute something constructive to the world to try and make things better for those diagnosed with cancer in the future.

What I didn’t count on was the COVID pandemic and the impact that would have on navigating treatment within the living-well parameters I had set for myself as I moved forward with my choices for living with this disease.  Living alone and relying on a strong network of friends and family for support added hurdles to navigating intense cancer treatment and COVID.

2020 – Uncertainty and Caution

The first year of the pandemic – pre-vaccine – I was on active chemotherapy most of that time, operating on barely enough infection-fighting white blood cells and neutrophils for safety or supplementing their diminished capacity with an injection to force my bone marrow to produce the cells critical to fight infection and bring me to a level of immunity enjoyed by the majority of people who are not immunosuppressed.  Social gatherings became small and strictly outdoors, often bundled up in coats and winter gear under outdoor heaters.  Shopping went online.  The maskless became a walking disease hazard to be avoided with a literal wide berth as I detoured to the middle of the street to avoid passing on the sidewalk or waited outside if an indoor space looked too people-packed.  Any travel or time out of town was a drive away, not a flight, usually camping or staying solo in an Airbnb with fully self-contained meals or sometimes with a friend who would pitch a tent or rent facilities nearby.  

Appointments and medical procedures were delayed – particularly during COVID peaks.  Symptoms for anything concerning that at one point would have warranted a trip to the ER on nights and weekends were managed until Monday morning to avoid the higher risk of hours sitting in an emergency department jammed full of COVID patients waiting for care.  Medical appointments and procedures at the hospital became a lonely affair.  Visitors and caregivers were limited and discouraged, especially in oncology filled with those at high risk.  And I did not want to ask my friends to come with me to a hospital and put themselves at risk if I could do it alone – the hospitals have been packed with people, many with COVID seeking care.  Instead hours trying to concentrate on a book or endless mindless scrolling through the phone replaced light-hearted chatter with a friend while waiting for test results or for a procedure to begin.

As everyone did that first year, I figured out how to make life work. But my world shrank and became very small.

2021 – Hope … and a Reality Check

The second year of the pandemic started with hope and then became a scramble to gain access to the vaccine. 

I watched cancer patients and immune compromised patients, who were among the most at risk of dying from this disease, being pushed further down the priority list of those who were eligible to be vaccinated. First the health providers.  Then 75+.  Then 65+.  Then essential workers exposed to the disease.  All of these lives mattered, and all were at risk.  But what about us – the people as most risk of dying?  When would we matter enough to get a vaccine? But I waited my turn.  Watching others declared vaccine-worthy and moved up the precious list. Cringing at those who rationalized their needs and eventually found enough excuses to jump the line.  The accompanying battles over masks and chest-thumping protests over individual rights cemented my realization of how little value of those of us who are ill have to society. 

For the first time in my life I understood what it felt like to be acceptably expendable. 

And once I received my vaccination, I could only hope that my body – beaten up by nearly 80 previous doses of chemotherapy – could muster an immune response to fight off this disease.  Because no-one really knew how effective the vaccine would be for us, or how long. The immune compromised were excluded from the initial vaccine research.  So even after vaccination I continued to interact with caution, not wanting to either contract it or worse spread it. 

I spent most of the second year of the pandemic in immunotherapy clinical trials.  Glad to have a shot at a new and different cancer treatment.  Glad to be able to do my bit to advance desperately needed cancer research.  Relieved to not be on chemotherapy and to avoid being such an immune compromised sitting duck for this virus and its human carriers.

2022 – Will this ever get better? Please …

Now, going into year three of COVID, after back-to-back immunotherapy trials last year that perhaps slowed but failed to stop my cancer’s growth, my fallopian tube cancer has once again spread through my abdomen and pelvis. Once again, I have to make decisions about what to do.  Which chemotherapy should I try or in darker moments, is it worth pursuing more treatment at all.  Which chemo is less likely to hammer my immune system. Which might be tolerable and make me less sick?  Which might work to kill those cancer cells.  And if it does work, which might buy me the most time before the cancer outsmarts it and continues its relentless progression? 

As I consider my treatment choices moving forward and I reflect on the last two years of managing cancer during COVID I have to ask myself – what do I get by continuing treatment?  Certainly the innate human will to live is buried in deep our DNA and choosing to die goes against millennia of evolution and everything our society reinforces.

But I also realize … I want my two years back. The COVID years have been diminished years with stolen opportunities … when I had so few precious and tentative minutes left to squander.  It’s like if I can kick the can down the road and survive longer with more treatment and somehow maintain a decent quality of life and health in the process, perhaps I will be glad I hung on and bought some extra quality time.  Will my world open up again in 2022 if I can just wait COVID out?

This year I want all the things everyone else wants.  The birthday parties and casual dinners with friends inside at a foody restaurant. Carefree travel.  Barrier-free movement to go to conferences and engage in advocacy work.  I want to tap my foot to live music. Sip a Last Word in my favorite cocktail bar. Hop on a flight and see my family and friends on the east coast or meet up for a soul-filling laughter-filled travel adventure. Spend a long weekend in a shared house with friends sharing meals and hikes and stories. Without pausing to survey the space to gauge if it’s safe for me to walk in.  Without wondering if those around me are sick or carriers.   Without worrying about getting sick while doing these things and being a burden on others.

For those of us with little time left to live, COVID has stolen two precious years and opportunities we will never get back. Perhaps this time – post-omicron surge – it will really get easier.  Perhaps there won’t be another variant that effectively locks me into my house.  Perhaps the fourth vaccine I received now available to the immune-compromised will truly provide that final barrier of protection we need.   As the world declares the pandemic over and eliminates mask mandates, my future movements indoors become more limited and complicated.  Wearing an N95 indoors will likely be a forever obligation from now on.  As will choosing outdoor spaces over inside whenever possible and avoiding indoor crowds and limiting my circles to keep them small and trusted.

I hope the chemo I choose will hit the magic trifecta and will kill cancer cells, not make me too sick and leave my immune system intact.  Buy me a shot at living a more open life during year three of this pandemic.  Regardless, for me and those like me, life moving forward will always require security measures, barriers, second-guessing and safeguards as we learn to co-exist with a COVID world.  I just hope I won’t be completely left behind as the world marches on.