… during a global pandemic.
That is always — has to always — be a thing.
On today’s episode of Things I Never Imagined, my oncologist instructed me to buy a plastic face shield to wear over my KN95 mask because the COVID-19 outbreak in Arizona is quickly becoming the worst outbreak in the world and the state of my immune system warrants the precaution.
The outpouring of love, support, advice and resources I’ve received from people across many chapters of my life and so many corners of the global village, has been profoundly comforting, touching and humbling.
Those words don’t feel like quite enough for how much it’s helped and how much it means to me.
It has predictably been a little overwhelming to share my story. But it’s also been an incredible catharsis, more so than I imagined. The band-aid is off, and writing this now hopefully means this particular chapter of my story can more quickly become part of my past than my present.
Practically, sharing my story has helped me rapidly connect with resources, experts and survivors during a critical decision-making time. As a result, my treatment regimen has been fine-tuned with the latest research and data available, which very well could be the positive difference in my treatment now and in maintaining good health many years from now.
Now, I’ve got some gas in my tank, some distractions banked and driving directions for the safest road ahead and I’m incredibly grateful. Thank you.
Test. Testing. Testing. 1-2-Six-Dozen Things.
Since this journey started for me on May 21, I have had three virtual medical appointments, 13 medical appointments spanning 10 offices and driven over 600 miles.
Multiple oncologists have reviewed my case and I’ve had tests both to measure the spread of my disease and to confirm my body is healthy enough for treatment.
- Full blood work, multiple times.
- A pulmonary function test to check my lung health.
- Multiple ultrasounds, including an echocardiogram to check my heart health.
- A PET-CT scan where I was injected with radioactive glucose and then sent through a large imaging machine to detect and map the cancer’s spread.
- A small surgery to implant a port under my skin on the right side of my chest for chemo delivery and blood draws. I imagined something poking out, but this device is fully subdermal. I go back to get it out after the cancer is gone.
- A bone marrow biopsy where my lower-back was numbed and a hollow needle was inserted into my hip bone for multiple samples.
Last week recovering from back-to-back surgery and bone marrow extraction was fairly painful, but I feel substantially better this week after days of bed rest.
How Bad Is It? What’s The Stage?
As much as I’m someone who finds comfort in information, over the past few weeks this has been information I’ve both been craving and fearing.
Let’s preface with some good news: My International Prognostic Score (IPS) puts my overall survival odds at 97 percent and my 5-year freedom from progression odds at 84 percent.
However, I have a fairly advanced and aggressive case. My test results put me at Stage III, meaning the cancer is fairly widespread in my immune system. Specifically, I have a 3s stage. My cancer is concentrated in my neck and shoulder and I have some in my chest and spleen.
Obviously no amount of cancer is good. However, my tests have otherwise come back “in the green” and I will start my first chemo treatment in the next few days.
Now, What’s Next?
I’m expecting to be in chemo for around six months.
My neck has swollen to a fairly uncomfortable size, even if the growth itself doesn’t cause me pain it’s pressing on things that do. I’m told that it should deflate substantially within days after my first chemo treatment and it’s unlikely anything will be visible after my second treatment.
I’m greatly looking forward to trading the visible manifestation of my cancer for the visible manifestation of my cancer treatment… and down-the-road: visible manifestation of good health.
I am expecting to start losing my hair over the next month. I’m trying to see the silver lining of not needing quarantine haircuts and six months off from trimming a full beard for the first time since I was 12 (not a typo), but there’s no getting around the fact it just plain sucks and it’s weird. But hair grows back and it’s a small sacrifice for long-term health.
I told a friend last year “I don’t want to look like a gym rat, I just want to look like I take good care of myself.” I still think that’s a healthy and attainable personal goal. But from the armchair of hindsight, I realize looks aren’t everything and that simply not showing visible signs of serious illness is its’ own form of fortune. So I’d probably change that to “I just want to look and feel like I’m in good health and embracing my good fortune.”
Next time on…
You may have noticed a theme emerging in the titles… Getting diagnosed… Getting staged… In the next week or two I’ll post “Getting treatment…”
But treatment is six months and I don’t plan to do a blog post for each treatment.
I’ll share a few short non-updates even if there isn’t any progress or news to report, but probably only every six-to-eight weeks or as I get news worth sharing.
This is going to be one of those times where no news is good news, where boring, straight-forward and having nothing substantial enough to say are ideal.
My health and treatment are still going to be top priority, but hopefully not in the all-consuming, entirely-overwhelming way cancer care has required near-every waking minute the past few weeks.
I’m hoping to ease into something resembling a predictable schedule, something that becomes routine, clawing-back head space and calendar space for things I love, including being outdoors, listening to music and I’m fortunate to say I love my job.
Hope this post finds you and your loved ones healthy, happy and keeping ahead of 2020’s curve balls.