Things are happening over here! Well, kind of. I’m still hurrying up to wait here at the hospital, but at least the components have been put into motion.
Let me explain. In list form, it’s my favourite way. Lots of text ahead. If the details don’t interest you, feel free to skim.
1. After getting my diagnosis on Tuesday, I met with my oncologist on Wednesday. A really smart guy who I quite literally trust with my life. An important quality in an oncologist. He reiterated my diagnosis – Stage 2 Hodgkins Lymphoma.
What that means, is that it’s cancer in my lymphatic system in two or more areas of my body (chest, bottom of throat, under arms), but isolated above my pancreas. There are subtypes of Hodgkins but I don’t know what I am. My oncologist did describe there being “desirable” and “non-desirable” types in terms of treatment, and mine is the latter. That’s because I have a cancerous mass taking up more than one-third of my chest, so it’s slightly more aggressive.
2. Treatment for Hodgkins is pretty standard across the board, and mine will be no different – ABVD chemotherapy to shrink the tumour, followed by radiation to completely zap it. ABVD just refers to the initials of each chemical that I will be injected with. Because of the size of the mass, I will get a slightly larger dose.
3. Apparently there have been a couple recent studies showing that Hodgkins is responsive to fewer doses of chemotherapy, reducing the chances of long term side effects in younger people. Because of this, my oncologist hasn’t set out a long term chemotherapy plan for me yet. I’ll start with 4 chemo sessions every other week, for a total of eight weeks. From there I will have a PET scan which will show how the cancer is responding to treatment, and we’ll determine if I’m good for four or eight more weeks after that.
4. Chemotherapy, for those who don’t know, just involves me sitting in a chair hooked up to an IV filled with the drugs for a few hours. This is the part that actually scares me the most right now, because I won’t have a PICC line inserted to give direct access to my veins. An IV is supposed to burn going in!
5. On top of the chemo, I will also be taking anti-nausea medication (he mentioned Zofran) and an injection to keep my white blood cell count up (and in turn, my immune system). The injection could be every day, or once a week, and I’ll have to give it to myself.
6. The side effects are pretty standard:
- Thinning of the hair, which will probably start within weeks of beginning treatment
- Numbness or tingling in my fingers and toes
- Metallic taste in my mouth
- Weakened immune system
- Early menopause/infertility
- Lung poisoning
- Heart disease
I’m probably missing some. The first few side-effects will either be a breeze or awful. I’ll take that as it comes. My oncologist is at least taking the last few side-effects very seriously, especially because I’m young and have to live with the risk of long term side effects for a long time.
Because of the weakened immune system, I’ll be at a higher risk for infections. This is very serious, because I’ll be in a state where even a small infection could kill me. Also, I’ll have to keep an eye on my lungs (coughing, shortness of breath) and may get regular pulmonary function tests.
7. I won’t have any food restrictions!! So long as my immune system stays okay, otherwise further down the road I may have to stay away from fruits and vegetables because of bacteria/pesticides.
8. I didn’t quite understand this before, but I understand it now – the cancer is putting me at a risk for blood clots because it is growing and squeezing the veins in my upper body. The blood thinners make it so my blood is thin enough to still make it through the veins without clotting.
9. The risk of clotting is why I’m not getting a PICC line right away. It’s also why I’m still in hospital and everyone wants to keep a close eye on me. It’s actually the scariest part of this whole thing. I didn’t get it before, but I sure as hell get it now – blood clots are no joke!
10. I’m still being treated for clots with a blood thinner (heparin) through an IV. The doctors don’t know how long I will be on this until my cancer gets small enough to safely take me off of it. The more popular oral blood thinner, Coumadin, apparently doesn’t react well with chemo and is not an option. When I eventually, if ever, get released, I will have to give myself injections of lower dose blood thinners into my stomach until I’m in the clear.
11. There’s been talk of keeping me in hospital for an additional 2-4 weeks. At least for my first chemo treatment to see how I react, and possibly for my second (what would be considered my first “round” of chemo – I know, it’s confusing). They also want to make sure I’m at a lower risk of clotting before they set me free.
Aaaaand I think that is it! Hopefully all that information didn’t put you to sleep. A lot of people have been asking for specifics so it’s nice to finally be able to give them. Like I said, I’m meeting with a radiologist in the next couple days who will make her recommendations for radiology, which will also influence the chemotherapy some. I honestly still don’t know much about radiology, so it will be nice to know what to expect from that. Some people react worse to the side effects of radiology than chemotherapy. Thankfully, I won’t have to worry about that for a few more months!
If you have any questions or want clarifications, ask away. I’ll answer what I can. As much as this next step scares me (and believe me, I’m no warrior, I’m really friggin’ scared) I’m happy to at least be moving in the right direction. Making decisions and taking steps that will work toward getting this cancer out of me.
Oh, and meeting with the radiologist means another trip to another hospital within the city! A brief escape!
Tomorrow’s post will have less words, more pictures, promise.