End of Chemo / August Health Update

So for most GBM patients, they get a six month course of temozolomide chemotherapy. I was able to get a twelve month course, which as of now has officially ended. If you continue taking the meds you run the risk of getting leukemia. Currently there aren’t any studies that show that continuing temozolomide will help. So right now I’m not interested in pushing it. It’s nice not feeling nauseous and as tired ^_^.

With the ending of chemo, I had to get a PET scan and an MRI sooner than I usually do. Unfortunately a new spot appeared in my MRI this week.  It was in my resection cavity, and we’re hoping that it is radiation necrosis. On one side, radiation necrosis tends to show itself within the twelve months following radiation treatment. I’m past twelve months so it makes me think cancer. On the other side, my PET scan didn’t show anything, so it makes me think radiation necrosis. So just like back in December I have no idea. I have to wait for another scan in four weeks to see if the spot is growing. This time I’m not as stressed for some reason. I kind of feel like I’m tired of getting stressed out.

So over the next four weeks we have to explore paths we can take if the spot is a new tumor. Basically we’ll be looking at different immunotherapy trials to see if we’re interested in any of them, and if I’ll be eligible.

On a non-medical note we finished watching Stranger Things recently on Netflix. Alex and I had such a great time watching that show. I especially loved the soundtrack and all the songs (generally 80s) that were played. One that I had long forgotten about, because at some point I got burned out on Moby, was his song “When It’s Cold I’d Like To Die”. I know it’s probably not the best song to attach to this post, but don’t worry I don’t want to die. I love the cold ^_^. I do want to relax and this song helps with that.

How things could go

Pre-reading warning: This isn’t the happiest post you’ll find on this blog, but don’t worry there will be a good video at the end that should make you smile especially if you’re a Jean Claude Van Damme (JCVD for short) fan.

I finally was able to meet with a neurologist this week. Apparently I should have been going to see one since my surgery, but since I didn’t pick up their appointment call (umm I was drugged and sleeping after surgery) they didn’t bother with another call nor did one of my regular docs tell me I should be seeing one until last week. I could bitch about many scheduling and patient care issues I’ve had (been trying to focus only on the positive), but I’ll end that here for the moment.

All that being said the meeting with the neurologist was for me one of the most helpful and informative meetings with a doctor I’ve had since all this began. You think when being diagnosed with a terminal illness the docs would give you more information than just an estimate on how long you have left to live. I’ve spent the last couple months trying to figure out, and to be honest scared shitless, about what would happen to me as I got closer to death. I’ve not been scared of actually dying (a lot of other emotions about it, but not scared), but I have been scared about the cancer growing back in my brain and what it might do to me while I’m alive. Would it change my personality, would I become angry and aggressive, would I go blind, would I forget about the ones I love? The list of such questions has been growing and growing and driving me nuts.

So what I was told is that the area of the brain where that piece of shit tumor will most likely re-emerge will mainly affect my short term memory, ability to use correct words/phrases, and it will make me more tired. He said that for most people who have the tumor in a state where it can’t be surgically removed, or if the patient doesn’t want another surgery, they keep sleeping more and more, and generally pass away in their sleep. I know that sounds depressing, but for me hearing that I felt a ton of weight lifted off my shoulders. Having someone tell you you most likely won’t suffer some terrible pain from death is to me a welcome thing to hear.

Friends and family have been hoping that the cancer takes its time to come back, long enough for some kind of cure for it to come out. I’m wishful for that as well, but it’s not something I can be blindly hopeful about and not deal with what has a higher chance of actually happening. I’m not giving up, but I am preparing for best and worst case scenarios.

Okay, so here’s JCVD dancing to a good tune. Close the annoying ads.

End of the Carnival Ride

Radiation machine, with the custom holder for my head. This is the machine I’ve been visiting M-F for the last few weeks.

 

The song below is taken from a long comp (120 songs) which some electronic musicians donated their tracks to so that sales would go to Macmillan Cancer Support. I’ve found this album to be a good one to listen to when it’s hard to fall asleep at night.

Next week is my last week of chemo and radiation. I’ve been looking forward to this treatment being over, but now I’m having second thoughts about that. Right now while there are various reasons why going through chemo/radiation treatment sucks, at least I feel that something is actively attacking the cancer that wants to grow in my head. There is some security in the treatment I didn’t really recognize I was relying on until today.

Once the treatment stops, I feel like the personal treatment becomes about trying to stay as positive as possible and not imagining the cancer continuing to grow in my head. From what the docs say I think I’m supposed to understand and plan out that it’s only a matter of time, but I don’t know how healthy it is to think that way. There are some things I have to plan out and get finalized in legal docs and the like regarding my healthcare and how my physical material is distributed, but besides that I’d really like to find a way to not focus on the fact that the docs have said that this cancer is terminal and will eventually kill me.

One medical treatment that I will be going through the rest of my life is taking chemo meds for a week each month to help slow the growth of the tumor. I’m hoping that I’ll be able to rely on that treatment as a foundation for continued fighting.

“Fight against cancer”

Even before I found out I had cancer I was always confused by hearing that people were “fighting” their cancer. To me it really just seemed to come down to whatever the docs were doing to the patient that was actually doing the real fighting. I also felt like if someone was observed as fighting against cancer, and ended up dying there was this idea that they somehow didn’t fight hard enough. And what about the people that might have had it so bad that they just didn’t feel like it was worth it to “fight” against what might have seemed like the inevitable? Were those people looked down on by their family, friends, and other people who were fighting cancer? So I guess I never really liked the idea that someone was fighting the cancer directly.

Once I found out that I had cancer, I felt like I could choose two paths. One that threw my hands up in the air, got severely depressed, and gave up with life, and the other where I tried to max out each day I had left to live. I think the fighting that cancer patients like myself are really doing are fighting against the depression, pessimism, hopelessness, and various other downers that can be caused by cancer. I’d like to think that cancer patients who are fighting against the negative emotions do help increase their odds for a longer life. But for those who have so much pain, or so little hope I don’t think that makes them any less a fighter than anyone else. They are just as in need and worthy of family and friend support as a patient who is more vocal about fighting against their cancer.