The standard post-surgery treatment plan for a GBM 4 does NOT include a sugar scrub, a pedicure, OR a massage. Instead, it involves an intensive 6 weeks of chemotherapy and radiation. I think the only ‘benefit’ of brain cancer is that the tricky blood brain barrier means chemo is taken 7 days a week in pill form rather than intravenously – with a drug that doesn’t cause you to lose your hair, usually. Radiation is 5 days a week and involves a mask and being attached to a table – and hair loss. Damn. There are weekly blood tests – what I call visits to the vampires. Regular appointments with my Radiation Oncologist, my neuro-oncologist, my neurosurgeon…all attended by nurses, residents, and medical students. At these visits, I’m weighed, examined, questioned, and tested for memory and motor controls.
4 weeks post surgery, I went for a ‘planning’ appointment for this treatment. This involved vampires, a CAT scan, physicists (no kidding), and being fitted for a mask. The mask is made out of this odd material that becomes pliable when warmed up, but hardens when it cools back down, so it can be used each day. The material reminded me of those meshy, styrofoam ‘jackets’ they put on Asian pears. I should mention here that I started this process with a slight case of claustrophobia. Multiple MRI’s, being fitted for a mask and then being attached at the head to a radiation table 5 days a week for 6 weeks is an extreme form of immersion therapy, but it works.
I found out quickly that while my neurosurgeon had an excellent bedside manner – my radiation oncologist did not. He is a lovely man and very good at his job, but either I’m not very funny or he lacks a certain sense of humor or an appreciation for bad Star Wars and Hobbit references. Yes, an ability to laugh at my ridiculous jokes is required for passing my bedside manner test.
Aside from being a very tedious process, I tolerated it all pretty well. I was tired, nauseous and gradually got more so. The treatment accumulates – particularly the radiation – resulting in more side effects – fatigue, headaches, hair loss….
1. At the beginning, I napped most days, but usually not much more than a cat nap. Toward the end, I was napping 3 times a day. Walking up the stairs was exhausting.
2. The thought of food was gross, the smell of food was gross, seeing food was gross – but I had certain things that tasted good so I could still manage to eat. Those things changed over the course of treatment. For instance, I hated a specific kind of ‘cheese’ at the beginning, but craved it starting somewhere in the middle of treatment. The funny thing about constant nausea is that I found myself thinking about food a lot.
3. The thirst was insane. I was ALWAYS thirsty and water did nothing to quench it. I started adding Vitamin Water Zero to my water bottle and it did the trick. Who knew? Every one is different, but this is one piece of advice I’d share with anyone going through radiation because unquenchable thirst is very frustrating and I would never have thought that just a little something slightly fruity would make such a big difference.
4. Radiation will likely cause hair loss. I ended up with what I call a ‘reverse monk’ – imagine a friar with his ring of hair around his head at ear level – THAT is where I went bald. Sometimes people don’t lose hair until after treatment is over. I was a ‘3 weeker’. When you know it’s coming, it’s easier, but it still freaked me out a bit and hats became a wardrobe staple. There are stories about people not growing hair back or it coming back a different texture or color. When you only lose PART of your hair, this possibility can create all kinds of anxiety. Turns out it’s coming back the same color, same texture and I only have one spot where I’m still bald.
5. Radiation can cause swelling in your brain. Which will give you headaches. Which requires you go back on the steroids you took post surgery. These steroids will make you irritable and ravenous. I ate…a lot. No seriously, a lot…and constantly.
6. Chemo will mess with your blood levels – it’s inevitable. The thing that they watch are your platelets. The platelets are essential for clotting. The lower your platelets are, the greater the risk of bleeding to death from a paper cut. OK, so that’s a bit of an exaggeration. I started out with a low(ish) platelet count, so I asked every nurse and doctor I met, ‘what can I do to raise my platelets?’, ‘I’m vegan, so is there something I can eat to reduce my risks?’ EVERY one of them said there was nothing I could do – ‘chemo will lower them, it happens.’ (More on this topic later) Some people live full and active lives with low platelet counts – but if mine went below 60, I was going to have to stop chemo. That happened in my last week – so not REALLY a big deal in the overall plan, but I felt like I was missing out on the opportunity to hit the cancer full throttle. What surprised me is how many people congratulated me when I mentioned that I had to stop chemo. It made me angry that they didn’t ask what it meant, why I had to stop, how I felt about it – but just jumped to an assumption that….well, I’m not sure what the assumption was…but I didn’t like it.
It was an experience. Not a day-at-the-spa kind of experience. It could have been worse based on stories I’ve heard or read. But radiation is something I’d rather not do again, if possible. Chemo, however, I’m stuck with. But now it’s 5 days each month at double the dose I took daily for those 6 weeks. Everyone asks, ‘how long will you have to do that?’ Each time, I answer ‘as long as it keeps working, for the rest of my life’ – however long that is.