Living Through Chemistry

I know the phrase is ‘better living through chemistry.’ In my case, it’s just ‘living through chemistry’ since my chemistry-in-pill-form just may be the thing that’s keeping me alive…and driving…and not throwing up…and not freaking out daily with anxiety and depression. I’ve never been a huge fan of taking pills, but this week I would LOVE to add a decongestant and an allergy pill to the mix…alas, I can not. Sigh. Sniff…Aachoo!!!

Day 2 of chemo: Tired, but managing the nausea so far.

Alarms, texts, emails, a poke in the ribs from my eldest child – sometimes it takes all 4 for me to remember to take my pills. It’s not that I don’t WANT to take them, it’s simply that I still haven’t quite learned that if I don’t stop what I’m doing IMMEDIATELY and take them, I will forget. Seriously. It’s crazy.

This is a small portion of what some people take, but behold my chemistry for a 24 hour period – minus 1 or 2 more oblong yellow ones if needed (my supplements are included here, for the record, since I have to take extra B12 and zinc):

IMG_3686

 

Post chemo cycle, the number of pills drops by 5 or so. I just feel grateful that there are no pain pills in this collection and that the ones here seem to be doing their job with few side effects.

A brief and not very informative history lesson: The phrase ‘Better Living Through Chemistry’ is derived from the DuPont advertising slogan  “Better Things for Better Living…Through Chemistry.” This was their slogan from 1935 through 1982, when they dropped the ‘Through Chemistry’ part. It’s also the name of the first album from Fat Boy Slim, a 2013 movie about a pharmacist, and a song by Queen’s of the Stone Age.

Itchy and Scratchy

I mentioned a couple of times that I have psoriasis. For those of you who don’t know – psoriasis is an autoimmune disease of the skin. Mine is of the plaque variety, but there are many different forms – some very painful and debilitating. Psoriatic Arthritis is a fairly common development for Psoriasis sufferers and there is an increased risk of other health issues. If you’re interested in more details, you can find more information here.

Mine is mostly on my scalp, but pops up on occasion in other spots. It would be considered a minor case considering that some folks with psoriasis have it on 90% of their bodies and end up in the hospital to control the pain and other symptoms. For me, given what other people suffer with this disease, it’s mostly an annoyance. It’s like having the worst case of dandruff you could ever imagine. Sometimes the spots on the other parts of my body hurt – especially if I have a breakout on my face – which doesn’t happen often.

I’ve tried a lot of medicines – mostly topical creams/ointments containing steroids. Some helped, some didn’t. But eventually, it came back and very often worse than when I started any given treatment. I decided – as my psoriasis flared at one point – that I needed to do something to treat the potential root causes. One of the (now ironic) risks of scalp psoriasis is hair loss and I really didn’t want to lose my hair (ha!).  I stumbled upon Dr. John Pagano’s Healing Psoriasis: The Natural Alternative and a couple of other books that seemed to point to similar triggers and approaches.

So, I changed my diet. I stopped eating nightshades – peppers, tomatoes, eggplant and some other foods thought to be triggers, like strawberries. I already avoided sugar, but I cut way back on my drinking (like, 3 glasses a week to 1). I also tried to switch to all natural products – minimizing my exposure to chemicals – shampoo, soap, makeup, deodorant, etc. I started taking supplements that Dr. Pagano recommended – drinking Saffron tea, taking slippery elm and lecithin capsules. I did a 2 week cleanse. Not only did my psoriasis nearly disappear, but I lost about 15 pounds. It was pretty remarkable. For the first time in my adult life, I didn’t leave a trail of flakes behind me as I left a room.

But, psoriasis is a fickle beast. Eventually it stopped working as most things that help seem to do. Shampoo, cream, or medication rotation is a common trend among sufferers.

I had also heard that chemotherapy would reduce or eliminate psoriasis. Some folks who don’t have cancer actually begin a chemotherapy regimen to control their severe psoriasis. They are so desperate for relief, they willingly take chemotherapy drugs. I figured that – aside from battling the beast in my brain – it was maybe one of the only benefits. I think it probably did help during that 6 weeks of non-spa treatment. But maybe I just didn’t care as much. It’s come back since then. As it always does.

After watching William Li’s TED talk on anti-angiogenesis, I thought that in my efforts to control my annoying minor case of psoriasis, had I inadvertently fed sleeping cancer cells in my brain – triggering rapid tumor growth? There are some who dispute William Li’s claims of anti-angiogenesis effects on cancer, but every theory/approach/treatment has doubters. If we knew what ‘worked’ to prevent/treat/cure cancer there would be a news story or two about it. We’d need less money for cancer research, not more. Each cancer is different, each body is different – it’s all a mystery and there’s never likely going to be that ONE thing that works. As much as we all might hope.

So, I eat tomatoes, strawberries, peppers and the other things I tried to eliminate to reduce my risk of losing my hair (ha!). My psoriasis is back – sometimes it’s worse than others. But IF anti-angiogenesis has any chance of helping control my brain tumor (or other potential tumors) – I’ll eat those foods that have shown to have an effect. If chemotherapy continues to keep my beast locked away, with or without a potential benefit of helping my psoriasis, bring it on. I’ll take an itchy head and a few days of nausea over a terminal brain tumor any day of the week.

This Ain’t No Spa Treatment

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.