This line of chemotherapy is a full time job. The previous three lines of treatment were infusions every 3 weeks. This regime of Carbo and Gemzar is more rigorous. On paper it is described as 6 cycles, but with treatment on day 1 and day 8 in reality it is 12 cycles. On day one I receive Carboplatin, Gemzar, Avastin, Benadryl, anti-nausea meds, lots of steroids and hydration. On day 8 I have an "easy day" and just have Gemzar, steroids, anti-nausea, hydration and I leave with my Neulasta "bionic leach" attached to my belly. This little parasite gives me a shot 24 hours after chemo to increase my white blood cells and neutrophils. 2 days after each chemo I return for a hydration infusion with special fluids called lactated ringers. Then there is the mandatory blood draw/urinalysis the day before chemo. So that adds up to 6 visits to C Squared (cancer center) every 3 weeks. I am here so often the desk staff doesn't even ask me my name when I check in. ugh.
The treatments continue to be difficult. The steroids get me so jacked up I am bright pink and flush the day after treatment. The nausea is intense. My feet ache, which I am told and desperately hope, will not be permeant damage like the taxol neuropathy. I have terrible night sweats and ripping headaches. My mouth is dry, like the dentist packed it with cotton balls. And then there are the other uncomfortable feelings and "dis-ease" in my body that are simply indescribable. My red blood cells are so low the fatigue is overwhelming. Just writing a blog post feels like climbing Kilimanjaro. And the last indignity, my hair is falling out in huge clumps. I am wondering if I should get a pixie cut, or hope it will not totally fall out, and just get a very short bob. It is all nearly unbearable- but it is working. My tumor marker fell from 2000 to 750, a wonderful 62% reduction after just my first full A/B cycle. I modeled this out for the next 5 cycles and I hope to end up with my CA125 in the single digits at the end of treatment. I have an 80% chance of getting back into remission. I must keep fighting, 3 months of hell are worth one more good year.
Thank you to Satie who has organized a meal train and to all you wonderful friends who have brought, or plan to bring, dinners in the coming weeks to fill up our fridge and freezer. This is a huge help and I am grateful. And thank you to everyone who has shopped for us all year, keeping me from the perils of Covid exposure in the grocery store. Speaking of Covid, did I mention? I had an antibody test two weeks after my vaccination that came back negative. I have not made Covid antibodies, sh*t! This is unfortunate but not surprising given that I started chemo just one week after getting the jab. So I continue to be very cautious and hope to have another antibody test in a few weeks to see if my weary and immuno-stressed body mustered any response. I may need another vaccination in the fall?
In news outside of my little bubble of suffering, The Biden administration just named
Anne Milgram to head the DEA. I wrote to her yesterday, pleaded for Cannabis research and the cruelty of Schedule 1. I still can not fully comprehend the insanity of my situation. After this line of chemo I am out of treatment options but an "illegal" plan medicine shrank my tumor, yet we cant do research with those molecules. This is absolute cruelty, a violation of my human rights? Maybe even negligent homicide? I say it again, if I die of this disease do not say I died of cancer. I died because the DEA has blocked Cannabis research for 40 year, despite hopeful preclinical data and numerous case reports. The clues were all sitting there in PubMed. If it is with my last breath I will work to change this. Maybe it is my purpose on this earth to bring down the DEA? Working toward that keeps me going. If my untimely death can spark big change I will have to take solace in that.
I'm coming for you DEA. You must be held accountable for your actions.
In fun news, a Cannabis activist in Japan who translates the Project CBD website has added subtitles to Schedule 1. The movie is now up on youtube and I had many new visitors from Japan. Thank you Miki Naoko for reaching out and for your activism in a country with very strict drug laws.
Thats it for now,