Thanks For Coming To My TED Talk: Parts 1 and 2
23 February 2019
(Again, on Facebook)
I feel obligated to say that I’m not a doctor and certainly not an oncologist. I’m just going off of what my doctors have written down and have explained to me…
Today, Saturday, was the end of Day 3 of my treatment for lymphoma. I’m doing a modified BEACOPP chemotherapy regimen because the ABVD/Stanford V treatments more common in North America contain medications that can cause severe complications because of my other serious medical condition. (Modified BEACOPP has a much higher cure rate over ABVD, anyway.) I’m doing 14-day cycles with more intense, stronger doses of medications. Eight days on therapy and six days (relatively) off for each cycle — for a total between four cycles (2 months) and six cycles (3 months). And as I’ve said before, I don’t plan on curtailing my workload or schedule. Anyway, feeling good, feeling great, etc etc etc.
Here’s what my day-to-day schedule looks like.
Day 1 — No Zofran before treatment. Adriamycin 35 mg/m² IV push, Cyclophosphamide 1250 mg/m² IV push, Etoposide 200 mg/m² IV infusion over 60 minutes, Procarbazine 250mg oral, Prednisone 100mg oral, Allopurinol 300mg oral, Prilosec 20mg oral, Prednisolone 200mg oral. Wearing cold caps (at -50ºC/F) for 8 hours (during treatment & after). Dexamethasone 16mg oral; Zofran 8mg oral as needed (+3 times a day).
Days 2 & 3 — Zofran 8mg oral before treatment, Dexamethasone 20mg oral before treatment. Etoposide 200 mg/m² IV infusion over 60 minutes, Procarbazine 250mg oral, Prednisone 100mg oral. Cold caps for 8 hours. Dexamethasone 16mg oral; Zofran 8mg oral as needed (+3 times a day).
Days 4 through 7 — Zofran 8mg oral before treatment. Procarbazine 250mg oral, Prednisone 100mg oral. Zofran 8mg oral as needed (+3 times a day).
Day 8 — Zofran 8mg oral before treatment. Bleomycin (10 mg/m²) IV push, Vincristine (2mg/m²) IV infusion over 10 minutes, Adcetris 60mg IV infusion over 30 minutes, Procarbazine 250mg oral, Prednisone 100mg oral. Cold caps for 8 hours. Zofran 8mg oral as needed (+3 times a day).
Day 9 — Zofran 8mg oral before treatment. Dupixent 300mg injection. Prednisone 100mg oral. Neulasta 0.6mL/6mg injection. Zofran 8mg oral as needed (3–6 times a day).
Days 10 through 14 — Prednisone 100mg oral. Zofran 8mg oral as needed (3–6 times a day).
Adcetris is brand new and currently only approved in the U.S. to replace a specific medication in the ABVD treatment, but my awesome mother called in major favours with the Germans/EU, Swiss, Canada and NIH to obtain a one-off approval. In exchange, I have mandatory CT/MRI/PET scans twice a week and daily blood tests. Tulane’s running the day-to-day collection of data and sharing it with NIH, and the participating research centres in Germany (Universität zu Köln), Switzerland (École Polytechnique Fédérale de Lausanne/Institut suisse de recherche expérimentale sur le cancer), and Canada (Faculté de médecine de l’Université de Montréal/Centre hospitalier de l’Université de Montréal).
PAIN MANAGEMENT: None! None for the lymphoma, and none for the pain that the new medications specifically cause. So far, already, the muscle and bone pain is nothing less than extreme.
COST: My health insurance (between the U.S. and Quebec) is covering 99% of the treatment, but it’s still ridiculously expensive. The Neulasta and Dupixent are $16K to $20K per dose. I’m responsible for the co-pays on all of the medications (expensive) and CT/MRI/PET scans (exponentially expensive) which easily will add up to $1000 per week.
24 February 2019
7:05am
(Not on Facebook)
I didn’t sleep at all last night. The nausea was awful, but not as much as the pain. The level of pain is exactly as strong as every time I’ve broken a bone. It’s constant and sharp, and the muscle pain is sore. The nerve pain begins somewhere in my brain stem and goes down through my neck, shoulders, and all the way through to my fingers—typing doesn’t hurt, oddly.
Soon, it’ll be time for my insanely high dose of Prednisone, followed a few hours later by my oral dose of Procarbazine—yes, chemotherapy medication. A while after that, after my body has absorbed it, vomiting begins. What a Sunday. Day 8, Thursday, is a day I’m really not looking forward to. It’s the experimental version of Day 1, with the side effects expected to be just as bad. If I can make it through Thursday, I have a fairly easy few days to recover a bit, and cycle #1 is finished. Only three to five more cycles to go.
I’m spending this entire time writing (in general) and editing film and video projects I’ve been neglecting. I also have annual reports for my businesses and taxes to complete, all due by the time I should be finishing this treatment up. The state and federal governments don’t let you off the hook for deadlines just because you’re in a state of “fighting cancer.” (I hate that term.) Most of it I can’t delegate to my lawyer and accountant, so I’m really hoping I’m of the mind to complete these reports, calculate my taxes, and get all of it in the mail (or sent online) by these deadlines.
One thing I am gathering the strength for is fighting my stupid insurance company, in the court of public opinion if need be. I’ve suffered enough over the past year, some of it directly at the hands of them. I’ve long been tired of their shit.
Time for my morning Zofran and Prednisone.
Everything is great. Fucking fantastic.
