Back in 2016, what felt like a tickle in my throat turned out to be a rare form of Peripheral T-cell Lymphoma (PTCL). It was doubling every week. I had the divine providence of living near an excellent cancer center – – Seattle Cancer Care Alliance (SCCA) – – and a brilliant oncologist, Dr. Andrei Shustov. The upshot? We stopped this bullet train in its tracks. The cancer fell to “below detection.” Yes!
THE ENEMY RETURNS
But… like any self-respecting cancer, this one mimics the soldiers in the Trojan War – – some cancer cells survived the chemo, and if my body was the castle, they are inside the walls, roaming the streets like thugs & street urchins. Lying low and steadily organizing for a new attack.
The 2nd attack came, without noise, without fanfare, somewhere between August to October of 2019. By the end of October, I had the same funny tickle as in 2016. This time in my left underarm. Again, the PTCL was raging in my body.
HERE’S HOW WE’RE SOLVING THE PROBLEM
1. Get the right insurance provider.
Alas my coverage was at Kaiser Permanente in 2019. What a mistake! Kaiser’s head of oncology refused to refer to me to SCCA (this boils down to which company gets the money). I started treatment in December 2019, albeit it thru Kaiser. In January 2020, I changed insurance and now have full access to SCCA and University of Washington Med Center.
2. Take a holistic approach, again.
Along with cutting edge medical procedures, make time evAlong with cutting edge medical procedures, I make every day count in terms of diet, meditation, laughter, exercise and prayers – – both on my own and Zoom calls with family and friends for a daily Rosary. And, to reflect on the adventure. You can read my musings here: http://bit.ly/lymphomajourney
3. Find the right treatment.
We’ve done four things. Act. Measure. Assess. Iterate.
We began with a drug called Folotyn in December 2019. But it did not slow down the PTCL. Rather, it accelerated, weakened me, and consumed me, literally. My weight dropped from 172 lbs to 139 lbs in about 6 weeks. It was now the end of January.
So we embraced, “Act. Measure. Assess. Iterate.”
We shifted to 4 heavy rounds of old fashioned chemo. The outcome was very good, but not stellar. Tumors receded, my energy rose, weight rose. All goodness.
Yet, some presence remains, EVEN after a massive pounding. Inconceivable how resilient cancer can be, no?
Again, it was time to “Act. Measure. Assess. Iterate.” So now, we are shifting to two biological drugs.
4. Keep the “final” treatment goal in mind.
The ultimate goal? An allogeneic transplant. The hurdles?
A) Get the cancer to “below detection.”
B) Protect against COVID-19 infection – – continue to quarantine in an aggressive manner.
C) Secure funding. I have been out of work since Jan 2020. After the transplant, I will be out of work as much as a year.
HOW CAN YOU HELP?
Here’s the part that feels awkward for me – – asking for help. I prefer to solve my problems, but this conundrum’s different. I will be out of work for too long. So I realize the need for humility.
If you want to help, you may do so in two ways:
– First, keep me in your prayers, so the universe conspires with us.
– Second, would you chip in whatever feels right by you? It may be $7.50, $75, $750, $7,500.