Guest Blog: Receiving Survivorship Care During a Global Pandemic
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the third in a series of guest blog posts by Rachel. Catch up on her earlier posts: Meet Rachel McCallum and My Search for Adult Survivorship Care.
If you’re interested in guest blogging, please reach out to us at info@childrenscause.org.
“With all the possible late effects of cancer and its treatment we have to worry about, it would be wonderful if I – and especially survivors less fortunate than myself – get the COVID-19 vaccine as soon as possible. A coalition of leading cancer organizations, including the Children’s Cancer Cause, have petitioned for vaccine priority for survivors.”
In my last post, I described the difficulties of obtaining long-term survivorship care over the years. I could think of a thousand “should have, could have, would have” phrases regarding my journey in search of adult survivorship care and support. But none of that will change anything now, so I am pushing on and doing what I can with the resources I’m lucky enough to have now.
Finally making it to a long-term survivorship clinic during a global pandemic was a rather strange experience, and I still don’t know what I’ll do regarding follow-up care. I am grateful that the team at University of Southern California's adult extension of CHLA’s LIFE clinic was very thorough. They made sure that as much as they could piece together of my health history between what was available from Kaiser records and current USC tests was documented so I can take the information with me wherever I end up next.
As I shared in my previous blog post, my search for care has been long and arduous, and I finally made it to a long-term survivorship program during the last semester of my grad school experience. This was significant for two reasons. First, it occurred amid a global pandemic, and secondly, the student health insurance which covered it would soon expire.
I was lucky enough that the insurance would be good from January to mid-August. However, the fact that COVID-19 slowed life to a grinding halt early on in the year meant that those seven months ended up being a rather small window of time to fit in all of the visits to Norris Cancer Center and the various departments within USC’s health science campus I was referred to. Life changed so suddenly!
I remember taking a selfie on the public bus with a colleague as I left my internship one day in early March. Like most Americans at the time, we had no idea how serious things were. It would be the last day we would see each other at our internship at The Painted Brain as schools and organizations were shut down. Life as we knew it changed dramatically… A year later, we’re still waiting for the longed-for ‘normal.’
I had been living a relatively independent life as a student in LA — despite the loads of student debt I was acquiring to do so. (Thank goodness for the extension of the federal student loan forbearance!) I had been getting around with a grad student Metro pass that allowed me unlimited rides on bus and train lines within Los Angeles County. If I wanted to go home to my parents’ place in Orange County for a weekend, I could always get to Union Station with my Metro pass and take Metrolink to the station close to them. Driving wasn’t an option.
It's difficult to be without a car in SoCal. When I voluntarily gave up driving a few years ago, I felt a great sense of grief at losing the freedom I’d had since I was seventeen. I also breathed a giant sigh of relief from the major anxiety driving had brought me the past decade or so of my life. Navigating my family’s neighborhood in South Orange County hadn’t been too hard, but trips to LA and back were a nightmare. At least going south to San Diego was a meandering road against the backdrop of the beautiful West Coast. Driving to Los Angeles just involved passing a lot of fast food joints, strip malls, and billboards.
As I mentioned in my introductory post, I’m most grateful to my mother for facing the nightmarish traffic so that I could keep attending school with my peers while going through treatment. It’s one thing to be receiving rides from your mother when you’re five going-on six. It’s another when you’re thirty-three. My financial situation led to me moving back in with my parents once classes went virtual. I’d actually taken more loans out that semester than each of the previous three, but that money had gone towards the student health insurance rather than rent.
Since I was still making follow-up visits to the USC Health Sciences Campus, I ended up needing rides from my parents from April through August. The rides to LA weren’t as awful as I remembered. Then again, this was from the perspective of an adult in 2020, when nearly all health facilities have free WiFi, and smart phones and tablets are widely available. I’d been a patient in the early 90’s, when the most advanced piece of entertainment equipment at the pediatric oncologist’s office had been a clunky computer with an 8-bit Reader Rabbit game on it.
In spite of the entertainment technology available now, I felt bad for my parents. Due to the pandemic, only patients were allowed in the nice and air-conditioned facilities. No outside guests were permitted unless absolutely necessary. My dad would usually take me. My mom has been going into the church office off and on from the start of the pandemic - it’s closed to the public of course - and my dad is working from home indefinitely. As annoyed as they were to have to figure something out or sit in the hot car for an hour or two, my parents would make the most of it. We’d bring lunch home from a favorite restaurant in Anaheim on the way back. Considering that many of these small mom-and-pops may be going out of business soon, this was a plus.
Another plus was the referral I received to the Roski Eye Institute. When I was seen by an ophthalmologist there, she referred me to her colleague, who was a specialist in scleral lenses. I was able to get a special hard contact lens for daily use in my left eye, which doesn’t close properly due to nerve damage. Dr. Chiu, the specialist, had to do a special fitting for the scleral lens, which took several visits. It’s a specific type of contact lens made specially for my eye that doesn’t close properly and gets very dry. I fill the lens with saline solution in the morning before I put it in and that moisture stays on my eye.
It took a little getting used to - and multiple COVID-restricted visits to be fit properly - but I’m so glad I have it now. I can definitely tell the difference between the way my eye feels after a day of wearing it versus a day when I haven’t worn it. As a Southern California native, Santa Ana winds have been the bane of my existence nearly my entire life. I kind of wish I’d been outside more often over the past few months so I could experience them and determine how much my new scleral lens is helping.
While the scleral lens has helped quite a bit, another part of the long-term survivorship clinic experience had me a little concerned. I had my first ever pulmonary function test (PFT). I had no clue what the test would be like since I’d never had it performed before. It was fairly straight forward and was mostly breathing in and out in multiple variations into a mouthpiece.
Then the clinical coordinator at Norris Cancer Center told me that there had been an abnormality in my PFT and suggested I see a pulmonologist at Kaiser to have the test redone, which I did. I’ve had several follow ups via teleconference and phone calls with a Kaiser pulmonologist. He was satisfied with the test results and told me to follow up with another PFT in a year. Luckily everything turned out fine, but “pulmonary function issues” is not exactly what you want to hear when a respiratory virus is killing people all over the world.
Speaking of the COVID-19 pandemic, I must once again emphasize some of the major issues it has brought to the forefront. These are systemic issues facing people all over the globe, which can seem especially stark in the United States. I’m talking about rampant inequality in health care - among other things - heightened by racism, classism, sexism, ableism and the like.
Though I mention a few things that have made my life difficult over the past year, (no one seems to have been unscathed unless their name is Jeff Bezos!) I’ve actually got it pretty good. Though it has taken me years to get the follow-up care I feel I deserve as a cancer survivor, I am particularly lucky to be in the situation I’m in.
With all the possible late effects of cancer and its treatment we have to worry about, it would be wonderful if I – and especially survivors less fortunate than myself – get the COVID-19 vaccine as soon as possible. A coalition of leading cancer organizations, including the Children’s Cancer Cause, have petitioned for vaccine priority for survivors. With a third vaccine approved by the FDA just this week, the prospect of expanding priority groups is looking brighter than ever.
Regardless of the current situation, the point I’m trying to get across with this blog series is that survivorship isn’t just “living a long time after diagnosis.” It’s far more complex than that. It’s confusing and frustrating for survivors and the people who love them.
There are so many things that survivors deal with long after treatment ends. These include physical, emotional, and economic issues and more. Keep an eye out for future posts in which I share the details of the physical after-effects and emotional challenges I manage in my daily life.