For those of you who enjoy extracurricular reading, this site does a very nice job explaining "DLBCL," including information about what it is, what the symptoms are (mine), how it is diagnosed, how the staging is classified, what the treatments are, etc.
I hadn't gone looking for a lymphoma info-site until this morning (have been completely uninterested in digging around for cancer facts on the internet until now) but, after talking to the doctor yesterday, was pleased to see that this site completely confirms everything he's talked to me about, from diagnosis to treatment.
I went in with a list of questions, and came out with several pages of notes (see photo). Between that website and this Q&A recap, hopefully most of your questions will be answered.
Q. What stage is it?
A. Stage IV. But, before you freak out, please know that this is not a death sentence. I repeat, this is not a death sentence. This just means cancer cells are present in more than one organ system (spleen and bone marrow). Staging is just one factor in the prognosis, which includes lots of other factors that are in my favor, youth and otherwise good health being chief among them.
Q. What will my treatment be?
A. A combination of chemotherapy and immunotherapy. Most people are familiar with chemotherapy—it kills bad cells and good cells alike, makes you sick and vomitous, makes your hair fall out and that's what makes you look like a cancer patient, even more than the cancer itself.
Immunotherapy is—from my experience in the hospital last Friday—a far less toxic intravenous drug that directly targets and kills the cancer cells ONLY. In Dr. Gandalf's words, it triggers the immune system to kill lymphocites (baddies) and adds 10% to the long-term cure rate. Yay!
Q. How long will the treatment last?
A. Each treatment cycle includes one day of chemo+immunotherapy, followed by three weeks of recovery. That's one day of medicine intake and 20 days of sitting around my parent's house in my Target loungewear, vomiting or not vomiting, losing my hair or not losing my hair, who knows?
Q. How many cycles of treatment will there be?
A. Best case scenario: 6 cycles. They'll do four rounds, and then check the level of cancer cells. If they don't see any, they'll do two more rounds just to be sure.
Less-than-best case scenario: 8 cycles. They'll do four rounds, and then check the level of cancer cells. If they are greatly diminished but not gone, they'll do four more rounds.
(Optimism Interlude: DLBCL has been shown to respond positively to these treatments 85% of the time.)
Least disarable scenario: 4 cycles + other procedures. They'll do four rounds, and then check the level of cancer cells. If they are not diminished enough to satisfy my doctor, I'll go to Stanford for a bone marrow transplant.
Q. When will my mega-spleen start to diminish (thereby releasing my stomach to return to normal proportions)?
A. Doctor hopes to see great reduction in spleen size even after the first round of treatment!
Q. When will I have my first treatment?
A. As soon as I can qualify for official disability status and the State of California lets me get on their state-funded insurance. (Allegedly within 72 hours from today). My first application for Medi-Cal was denied because I'm over 21, am not pregnant, and don't have any children. Ha! Bureaucracy is even more ridiculous than cancer.
Q. What will I do for those many many weeks of recovery time in between cancer treatments?
A. Good question. I have visions of setting up several "activity stations" that I can rotate around to suit my mood and energy level. There's no way I can sit in front of the TV for 6 months straight. That would kill me.
My cancer fantasy goes like this: wake up, read and do the crossword. Then perhaps an hour of yoga and meditation. Then I might sit next to a window, listen to classical music and make Art. Then take a constitutional stroll around the block, or get some sun whilst floating on a raft in the pool (sanitation circumstances permitting). Or, entertain my many visitors.
Or maybe I'll just vomit and cry and pick out my hair. But I doubt it ;)
Q. Will I still be able to have children after all this?
A. It's not guaranteed. But if I'd like to preserve the possibility—which I do—I'll get on some kind of birth control, which will somehow protect my ovaries on some level from the toxic chemotherapies.
Q. Can I have visitors?
A. Yes! Yes I can! Whenever and whoever I want. Whenever. Whoever. Everybody. You just can't be sick.
Q. What about Target? The grocery store? The movies?
A. There will be a small window around 7-10 days after treatment when my white blood cell counts will go down, and I'll have to lay the lowest. Otherwise I am free to circulate amongst the general public while employing common sense and, you know, making good choices.
Q. What about Medical MJ?
A. The Oncologist responds: Is it ultimately going to help me heal or cure my cancer? No. But will it hamper my progress or alter my blood levels or have any negative impact on my treatment? Also no! I'll just leave it at that for now.
Q. What else am I leaving out?
A. Nothing I can think of at the moment. But if you've got more questions, lay 'em on me.