Five years after being diagnosed with cancer, and I am still on the treatment “treadmill.” I was originally diagnosed with Stage 4 non-small cell ALK-positive lung cancer shortly after Christmas 2016.

This 5-year status update for my “cancerversary” is a little overdue because the results of my MRI scan in November of last year were ambiguous. I had another scan in January and was hoping for a little more clarity, but the results were still not clear-cut. I decided to provide an update anyway. The combination of targeted daily medication and several rounds of radiation therapy have kept things mostly stable for the last several years.

The MRI from November 2021 was a scan of my head and spine since I had two small metastatic tumors in my brain that were successfully treated via proton therapy when I was initially diagnosed. I also have a small lesion on my spine as well that has persisted despite all the treatment. My November 2021 MRI showed that the spine lesion had grown about 5mm compared to a scan 12 months prior. However, the lesion was basically unchanged compared to the most recent MRI 6 months prior. Although not alarming, 5mm growth over 12 months is somewhat concerning since I would prefer to have no growth at all!

In addition, the MRI showed some possible growth of the small lesion in my brain that had been treated 5 years ago. My radiation oncologist consulted with the tumor board and the initial assessment was that a new separate tumor had appeared. The radiation oncologist ordered another MRI in January to get a better idea if anything was actually growing since the change seemed to be so minimal.

I left this unappetizing morsel of information to simmer on the back burner for the next two months. I have had a lot of experience with similar situations during the last 5 years, so I only had a small meltdown around Thanksgiving. But that was mostly due to exhaustion from my ongoing insomnia.

I had another MRI in January, and the radiologist eventually judged that the brain tumor had increased “slightly.” The spine tumor was unchanged compared to the November scan but still about 5mm larger than it was a year ago. I was a little anxious, but at the same time it wasn’t entirely bad news either.

Can there be too many cooks in the kitchen?

The matter is further complicated by the fact that the initial radiation oncologist only deals with my brain tumors while I have a second radiation oncologist who is responsible for treating my original lung tumor and spine. Plus, I have a general oncologist who is the closest to being the “captain” of my treatment team. I would rather have 3 experts who are hyper-specialized rather than 1 or 2 generalists that try to do everything. But it still isn’t easy to get 3 doctors to agree on anything, especially something where the evidence is so marginal!

My brain oncologist was more concerned about the possible growth than my lung or general oncologists. I am not panicked about it, but I will remain vigilant. There are possible side-effects from using radiation to treat my spine, such as possible bone fractures, so I don’t want to jump the gun. But at the same time, I don’t want to let the cancer gain any ground. After further discussions, I told my doctors I would hold off from treatment from now, but that I want to pull the trigger if it continues to grow. If I do need more treatment, the doctors said it would be quick and uncomplicated since the bone of my spinal discs provides an additional “buffer” zone. Proton therapy can target the tumors very precisely without damaging any nearby tissue. If I do need more radiation in the future, that will be my third round after my initial treatment in early 2017 and a second round in 2020 to treat my primary lung tumor.

After 5 years, the treadmill of treatment continues. I still get MRI scans every 6 months and CT scans every 3 months that show my lung tumor has responded well to treatment. I take a pill every day and get my blood drawn every month (the results have been stable recently). The routine never lets me forget that I am merely mortal. Five years later, I still need to perform daily vocal exercises after the cancer partially paralyzed my vocal cords. Every time I shave, I still carefully maneuver around the concave scar on my neck that resulted from surgery to repair my vocal cords. The fact that I’m still in treatment probably seems outlandish compared to the average length of chemotherapy treatment of approximately 3 – 6 months.

I still attend a monthly young adult cancer support group. There’s another person whose cancer experience continues to be a years-long marathon like mine, but most of the other members talk about readjusting to the “new normal” of post-treatment life.

I often lament that it would a nice problem to have! However, there currently is no cure for ALK+ cancer – only treatment that hopefully continues to control it. Nevertheless, the average survival rate is still slightly under 7 years even on medication, and only 2 years remain before I hit that milestone. Research continues to seek new treatment options – especially for ways to tackle ALK+ cancer when it develops mutations that circumvent the current medications. The good news is that clinical trials are already underway in case I should ever need new medication. Thanks to everyone who donates to my annual fundraiser!

I can still hear clock ticking, and feel the last 5 years have been borrowed time. Unfortunately, COVID-19 has also side-tracked the last 2 years, but hopefully the situation will finally settle down into another “new normal” as well. The combination of COVID-19 and stage 4 cancer was particularly terrifying before the vaccine was distributed. These two factors were undoubtedly the cause of my “COVID-somnia” which suddenly appeared in 2020. Despite my 20-year history of sleep apnea, I never really had a problem staying asleep until COVID arrived. But, for the last two years, I’ve been unable to fall back asleep if I wake up during the night (which I almost always do). Only now is my sleep quality approaching a “new normal,” although I still have periods of insomnia and extreme fatigue.

Despite the uncertainty, I have been blessed with many positive opportunities as well during the last 5 years. In 2018, I finally returned to Paris with my family after first visiting nearly 20 years prior. I had dreamt about it for years and finally made it come true. We plan to visit again in the fall of 2022 (a birthday present for myself to celebrate my 40^th) after COVID delayed us for two years. I also visited New Orleans with my dad and uncle. Nataliya has been a supportive and loving partner for the last 3 years! We are looking forward to finally getting on the road again together this spring and summer as well! More recently, I have been refreshing my French conversation skills and acting as “game master” for several role-playing games. I am also lucky to have a good job and excellent insurance (which covers the insanely criminal $17,000 monthly cost of my medication). I’ve even found a few truly 0% ABV “beers” that are a reasonable approximation of beer, such as Hairless Dog Brewing and Heineken 0.0, since I still can’t drink real beer (a side-effect of my medication). It’s been so long I don’t even miss the real thing any more!

The last 5 years have been a gift, and with any luck there will be many more!