Monday, October 24, 2011


When I was in high school, we had a guest speaker once.  She spoke of her life in Poland during the Nazi invasion, how she was captured and repeatedly escaped.  Incredible stuff.  Afterwards I spoke to her, and I told her how I can't imagine how she could find that kind of strength.  What she then said to me has always stuck with me.  She said she thought my life was far more difficult.  Even though her life was constantly on the line, she always knew exactly what she had to do, whereas I was drowning in possibilities, choices and confusion.  She knew she had made the right choice if she got to see the dawn of another day.  I might never know.

I remember this every time someone tells me how brave I'm being, or how strong I am.  I'm not brave, or strong.  I only have one path I can take.  I know I've made the right choice as long as I'm still alive.  There's just a bit more of a delay between my actions and their consequences.  So I follow my path, not out of bravery or strength but out of necessity, because my alternative is to give up and die.  I do not consider that an alternative.  If I have shown one admirable trait during this ordeal, it is my endurance.  Even then, were I unable to continue to drag myself down that path, I have people around me who would drag me along anyway.

It wasn't long before I first noticed the side effects of my combination radiation/chemotherapy.  I felt exhausted from the chemo almost immediately, but promised myself I would work as much as possible: I had a mortgage to pay, and credit card bills, electrical bills, water bills, medical bills, association fees, and oddly enough none of those companies seemed willing to give me some time off without substantial late fees.  It's hard to describe the fatigue that comes with chemotherapy.  Even at my low dose, it was a mix of a physical weakness along with a general sleepiness.  The radiation only added to that, as it's known to be extremely tiring.  It kills brain cells, after all.

Add to that the sheer distances involved.  You see, the hospital where I received the treatment was not in the city but it was still 45 minutes away.  I had to leave work two hours early, drive 20 minutes to meet up with my parents, ride in their car for 45 minutes, and then go under the gamma-knife for all of 15.  Afterwards another 45 minutes back to our meeting spot, and then the real killer, a little over an hour driving myself home.  I kept a change of clothes and a dose of my medications at my parents' place, in case there ever came a day I couldn't make it.  Though a few days were close calls, I always managed to make it home.

The first day of radiation therapy I felt a slight sensitivity on my scalp whenever I moved it.  This would normally go away after about an hour, though over time it would come to last longer and hurt more.  It was, after all, a radiation burn.

About two weeks in, both of my parents - who work full-time - were too busy to take me.  I mentioned in casual conversation that I'd need to drive myself and the aforementioned Jill immediately offered to drive.  I tried to explain to her just how much she was offering, in case she didn't understand the distances and time commitment involved.  Still she insisted, and Jack came along too.  In retrospect, it was a bad idea for me to call them Jack and Jill, since the referenced characters were siblings and these two were to be married in late September.

It just so happened that we hit the worst traffic I'd ever seen that day.  That twenty minute drive I mentioned before took us over an hour.  We called back to work to have the receptionist check the traffic report, only to discover that she barely understood what a mouse is for.  I had to call ahead to the treatment center several times to make sure they wouldn't close without treating me, and we cut it very close.  People were leaving when we arrived.  Jack had assured me that even if the place was closed when we got there he'd break in and we could figure out the machine on our own.  While I'm fairly sure he was joking, I do not doubt that he would have gotten me my treatment that night, no matter how many calls we had to make or how far he had to drive.

The two of them even took me to dinner on the way home.  They refused to let me pay, even though I'd cost them time, fuel and frustration.  At no point did they seem like they'd regretted helping me in the slightest.  These two were - and are - two of the best people I've ever had the pleasure to know.  I only hope that I can return the favor some day. 

That night, working at my computer in the comfort of my home, I felt a small itch along my hairline, above my left eyebrow.  I scratched only lightly, but when I drew my hand back I found that the tip of my finger was completely covered in hair.  I stood in front of the mirror, gently teasing away the hair that came loose.  "As if it were stuck in butter," is the metaphor I've heard.  Quite apt.  I lost only a small patch at the time, bridging the gap between my hairline and my scar.  It was subtle enough that I didn't bother to cover my head, and no one even noticed.

Of course, I lost more hair than that.  It spread along the underside of the scar until I'd lost nearly all of that hair.  I looked like I had a dramatically receding hairline then, but still nothing I felt the need to cover.  Then it began to spread above the scar, toward the center at first, then spreading to the left.

My doctor had advised me to keep it covered after I started losing hair, not for matters of vanity or style, but because of the radiation burns.  They had been getting worse, though still weren't enough of a problem for me to treat with the moisturizer, anti-bacterial cream or steroidal cream they'd given me.  I refused to wear a handkerchief.  To me, that says, "I have cancer" even more than wearing nothing at all.  Instead I dug up an old wide-brimmed fedora, more of a cowboy hat really, that I'd worn from time to time in high school.  It fit me well - unusual due to my big head - and was quality enough to look like an actual hat rather than a piece of a costume.  However the hat was warm, and I couldn't really wear it in my car.  I had a du rag that I tried, and it worked well but didn't really fit me right.  It stuck up in the middle, and I felt awkward wearing it.  The hat did fit over it, but if that were enough to solve the problem I could have simply worn the hat.

I ended up going with a bandana from the guys at Sparkling Earth.  Or maybe it's a skull cap.  I don't know what they call things.  Anyway, they have a huge selection of patterns but as I was looking for something a little more subtle than flaming skulls, I went with plain black.  It's actually a pretty neat little garment.  It has a band of terry cloth in the front for catching sweat, fits nicely on my head, and seems to be pretty high quality.  Best of all, people have asked me if I'm a biker, or about the "pirate" look, but so far it doesn't seem to shout "cancer" the way a handkerchief would. 

People said that they understood why I wanted to keep my head covered, but I don't think they really did.  It wasn't about privacy, or shame.  It was because my hair looked so awful, there is no way any of them could have looked at it without being reminded of my disease.  I had lost most of my hair on the front-left of my head, including my sideburn.  On the right side I suffered an "exit wound," losing even more hair, including that sideburn.  What I had left - what I still have left - was complete baldness on the front of my head, save two thin patches branching down on the right side.  Thankfully my eyebrows and eyelashes were spared.  My head was irritated from the radiation burn, which no longer looked like a simple patch of red.  Instead it formed a grid that mirrored the mask I wore during treatment, as though its form had been branded into my skin.  By then, I was using the anti-bacterial and steroidal creams they'd given me.  I had developed a mild case of radiation-induced dermatitis (burn pimples!). 

In the following weeks the redness faded, and the dermatitis recovered.  My hair has not.  They say it can take three or four months before the follicles become active again.  Even then, they don't know how much will grow back, or if it'll be any different than the rest of my hair; I've heard the texture and even color sometimes changes a little.  And it sucks.  It really sucks.  I'd had long hair since I was 14.  Still, I take comfort in knowing that this had to happen.  I did not have a real choice.  I had to have radiation therapy, and my hair had to fall out because of it.  All I had to do was endure it.

My mental state was another case.  My body had slowly adjusted to the radiation and chemo and I found myself less tired around the middle of my treatment, but things started getting harder again near the end; both therapies have a cumulative effect.  In addition to the fatigue, I had trouble focusing.  My memory seemed to get worse, though whether that was a result of the treatment or my growing familiarity with my post-operative self is unclear.  Likely it was a bit of both.  I also started to suffer from some of the same symptoms I had before my surgery.  That much made sense; they were caused by swelling rather than direct infiltration by the cancer, and radiation also causes swelling.  I had fallen behind on my work, but I was still working as best I could.  My co-workers and boss have shown me a great deal of patience, and for that I am grateful.

Most of those symptoms cleared up within a few weeks.  I'm still a little shaky on my memory but it's easier to focus now, and most of the symptoms that recurred have since faded, as others (such as my blind spots) have continued to heal.  So the least I can say is that even though it's rough, it will get better.  At least, most of it.

They say that in retrospect, these sorts of ordeals seem to have just flown by.  That is not the case for my radiation treatment.  I remember being acutely aware of how many sessions I had left, each and every day.  When I reached the mid-point I didn't feel like it was all downhill from there, or that I'd already proven I could do 15 days and just needed to do another 15.  I felt like I could not believe I was only half way through.

But I did endure, and I did get all thirty of my treatments as scheduled, without missing a single day of work.  On Wednesday, I'll get my first MRI since right after my surgery.  That should give me some idea on whether or not I took the right path.

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