Hair! Not The Musical

Hair – it’s a part of who we are, how we define ourselves, the image we present to the world. Whether you have long, short, straight, curly, thinning, colored, permed or no hair at all. Some people change their hair like their clothes – following the trends or making bold changes just for the fun of it.  Some people haven’t changed their hairstyle since high school. Some people hide their grey and others wear it proudly. Some truly believe a comb over isn’t noticeable, some go bald with confidence, and others just shave it all off. Some spend a LOT of time styling each day making their straight hair curly or their curly hair straight – using tools and product that I don’t even know exist. Some just wash and go. Hair is a multi-billion dollar industry. People are famous for their hair – Donald Trump, Jennifer Aniston, Dorothy Hamil, Yul Brenner…

Kids can get sent home from school for dyeing their hair the ‘wrong’ color. That’s always seemed ridiculous to me – there are SO many worse things that kids could do – what’s wrong with them playing with the one non-permanent thing they have control over. If my kid wants to dye his/her hair purple and wear a mohawk – I’ll support it. A tattoo, on the other hand…my kids think you have to be 35 before you’re allowed. Shhh…don’t tell them. But hair…it can be changed.

My husband’s barberess (that may not be a word, but yes, a woman…in a barber shop) recently shaved her head. She had long hair – almost to her tush and without it, she looks very different (my husband tells me, anyway). She explained that it was an act of ‘letting go’ and starting over. I’m not sure if she explained it as a part of her Bhuddist practice, but I suspect it has something to do with it. She wears her baldness confidently and proudly – stating ‘It’s just hair. It grows back.’ She’s right – for most of us, at least. I thought this was an amazing example, though, of letting go of something that we all hold to be so critically important to our image of ourselves – something that we use to define ourselves to others. Ultimately, it’s not our hair that defines us, but our thoughts, actions, and relationships. But we live in a society that places so much value on outward appearance – so it’s hard for me to imagine letting go of it so easily. Of being so vulnerable to those social judgements, by choice.

I lost some of my hair pre-surgery – thanks to Dr. Miller’s skill with a razor. I lost some more of my hair for surgery itself – maybe Dr. Miller again. I lost even more of my hair starting week 3 of radiation treatment. Losing your hair in ‘handfuls’ is a very odd and disconcerting experience, I’ll admit. I hid my strange bald patterns under a hat – mostly because I was cold with the middle of my head being bald, but I was also very self-conscious about my reverse monk style.  My hair is longish, but it’s thin – so even though the bald spots (just over my ears, all the way around my head) were largely hidden by the hair I had left, it was still quite apparent. I didn’t lose it all – and I wonder if I had whether I would have worn a wig. It’s really hard to say unless you’re in the situation – looking at yourself, bald in the mirror. But I think I would have forgone the wig.

I spent time worrying about whether my hair would 1. grow back at all 2. grow back a different color and 3. grow back a different texture. People have had experience with all 3 or a combination of the 3. I actually contemplated shaving the bottom half of my head, under the bald area. When I asked my Radiation Oncologist about my hair during one weekly appointment – he mentioned they have a way to address it with folks who have only lost part of their hair during treatment. I didn’t ask how – it likely involved more toxic chemicals and I decided to take the ‘wait and see’ approach.

Well, my hair is growing back the same color and texture as the rest of my hair (thank goodness). I only have one area where the hair seems to have given up altogether (i.e., I have a bald spot which will likely be permanent). But because of the different times and ways in which I experienced my hair loss (i.e. razor and falling out), I have hair that comes in all lengths – and it’s not just the way it’s cut/styled. The funniest spot is the ‘Alfalfa Sprout’ on the top of my head. I don’t wear a hat anymore – unless it’s for sun protection or because I haven’t made it to the shower yet and have to go out in public. Mostly, you can’t notice the oddness that is my hair and honestly, I don’t care – I earned that oddness and I’m embracing it proudly.

BUT, it’s time for a haircut. So…what to do?  I’m afraid I’m not as bold as my husband’s barberess, so I have a more complex decision. Shorter to aggressively start to get to an ‘even’ length? Just a trim to reduce my split ends, but not lose so much weight that my crazy 2 inch long spots can’t be contained? Somewhere in the middle? Haircuts cause so much turmoil! I’m not very fussy about my hair – these days I’m usually a wash and go kind of person, but as it’s growing back – I’d like to have the chance to primp and preen if I so desire.

I’ll probably spend some time looking at hairstyle pictures in the next couple of days. I may go bolder, but it depends on my mood. I’m not hormonal at the moment, so I’ll likely make a well-researched, thoughtful decision (if you can do that with hair.) I am intrigued by the cool temporary colors available today and I’m not working in an office at the moment…so if there’s a time to go wild, it’s now.  I’ll let you know how it all turns out on Friday.

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.