My Back! My Nerves! My Brain! My… Slightly Better Everything?
Friday December 02nd 2011, 5:50 pm
Filed under: Leukemia, Me, Myself, and Reid

I’ve been seeing my surgeon (platonically) every few days since he performed surgery to remove the large radiation burn from my lower back in October. We considered a plutonic-239 relationship, but radiation’s exactly what got me into this mess in the first place. At each of these visits, the surgeon looks at the work he did on my back, admires it, and says that it’s coming along nicely. Sometimes he’ll poke the surgery site with a cotton swab, or if he’s feeling particularly feisty, he’ll jab it with some sharp metal implement, whereupon I’ll squeal.

“Great, we’re done for today,” he always says at that point, entirely non-sarcastically, “it’s coming along nicely.” A nurse bandages up my freshly battered wound, and the entirety of my visit, from start to finish, is done within about five minutes. It’s routine.

Yet, I can’t help but feel something is off about this whole process. Perhaps it has to do with my surgeon, Dr. Laidback (not his real name), who told me that, after my surgery, I would be “all healed up within two weeks.” I know I’m not the greatest math wizard to ever dabble in in mathamagics, but I could swear that two weeks after October 21 would put Dr. Laidback’s estimate somewhere around October 41, or November 4, if you adjust for inflation. When he made that estimate, I offered a counter-estimate of uncontrollable laughter. But he stuck to his two weeks. And then, he oddly stuck to his two weeks, even as weeks and weeks went by. More than two weeks.

Eventually, LB (not his real initials) was forced to confront the problem of the fourth dimension, which, as we all know, is ego. Were my back to have healed entirely from surgery by that November 4 estimate, it would have had to have gone back in time and had surgery several months earlier, if not even longer ago than that. Because, as has become clear, this is not a two week heal deal, this is an ambiguous, unpredictable no one knows when it will heal deal. But, while LB acknowledges that my back is not healed, and will not be for some time, he continues to tell me how good it looks, and that I can get into a hot tub with it anytime I want. This is not a question I have ever asked–he is just saying this because hot tubs are known to be one of the ultimate places to get open wounds infected, and he wants to make it clear that my back is fine. Which is highly debatable, if not entirely untrue.

I don’t want to give the impression that I’m angry or sad or mopey about this, because I’m not. I knew, from my experiences over the past four years, that my body was not going to cooperate fully in this endeavor. And it is cooperating, to an extent; the surgery site is healing, it’s just going very slowly. The radiation burn on my back was removed from my lower back, one of the biggest tension spots on my body–so almost every movement I make causes that spot to contort in some way. Even before the sutures were taken out, the incisions split open. And then they got wider, and wider. And that was really scary, but they did eventually come back together and close up. So there is healing, but it’s slow.

And there’s a really amazingly great unimaginable good thing about this. Before this surgery, my lower back was dominated by a deep concave indentation, lined with scar tissue on the immediate surface and radiated and necrotic tissue immediately underneath it. I was told by everyone, every single doctor and surgeon and specialist who cared to weigh in since February 2008 (and there were a lot of them) that my back would never have a normal flat human back shape again. More than that, the theorized 14 hour surgery to attempt to fix my back was deemed to be so dangerous to my life that it would not be worth trying. I had given up on ever having a normal looking back again. And then, after nearly four years, LB restored the normal flat shape of my lower back without ever coming close to risking my life, and he pulled off a procedure that took far, far fewer than 14 hours. So I must give credit where credit is due.

That said, I have a hole in my back. Which I didn’t even realize until I took a picture of it a few days ago. One of the major disadvantages to having a wound on your lower back is that you can’t see it (even in a mirror, it’s like a vampire or something). And if you’re a good or, honestly, a squeamish patient like me, you probably won’t go sticking your fingers in it to explore what you can’t see. I think this information was very unintentionally not shared with me because so many people have looked at it and worked on it, from LB to nurses to other doctors to my parents, that everyone likely felt comfortable that someone else surely must’ve explained every detail to me. Oops. I don’t really blame anyone for this, but it surely furthers my anti-hot tub thinking.

I’m frustrated is what I am. I’m grateful for what my back will eventually be, but I’m frustrated with the healing process. Not because it’s slow, but because I have no concept of how slow it is (I actually had to ask LB to start measuring the hole, recently, y’know, for progress… yeesh) and because LB is really, really bad at estimating. Surgeons have to be unbelievably confident, like jet pilots are or Evel Knievel was, because they can’t have any doubts while they’re doing their job. While I absolutely recognize that it’s a job requirement, I’ve also had experience with surgeons where it can get out of hand. While there are plenty of nice, lovely surgeons, there are unfortunately surgeons whose confidence has turned them into asshole jockey surgeons, or god-complex surgeons, or, as in this case, laid back “everything’s cool” surgeons.

So I may be frustrated with my back for a while longer (not a real increment of time).

In the meantime, I’ve developed a new problem and I’ve come to better understand another one.

The new problem started a few weeks ago. From time to time, I have been having a pins-and-needles sensation in the palms of my hands that comes along with a sort of numbness. In many ways, this is similar to the peripheral neuropathies in my hands and feet that I developed during my first months of chemotherapy in late 2007. At that time, the nerves in my hands and feet were toxically damaged by specific chemo drugs to the point where they were excruciatingly painful at all times. I’m not sure why, but the neuropathies in both my hands faded away soon after I left the hospital in May ’08, while my feet took years to fully recover. At any rate, it’s quite odd that I’m experiencing anything like this again now, after chemo.

The fact is, the chemo drugs that caused damage to my peripheral nervous system should be long gone from my system. Also, when I had neuropathies during chemo, they were constant, but what I’m experiencing now in my hands comes and goes. The intensity varies, the length of time it lasts varies, and for some inexplicable reason, my fingers touching certain things, like fuzzy towels, or my beard, or sometimes even running water, seems to sometimes set off the sensation. I’ve had a series of tests run to determine what could be causing this, and other than ruling out diabetes (haha, take that, insulin!) and some other blood-based diseases, we’re pretty clueless at this point. I’m going to have a test called an EMG, which will determine if my nerves are being interfered with by one of the many medications I’m still on, or if there’s something wrong with my body, itself. This is done by sticking several needles into the underside of my wrist and sending electric currents through them. While I think it’s cool that there’s a test that can reveal the source of my problem, this test sounds absolutely terrifying. At least it will provide some sort of answers.

During chemo, I developed a large, ongoing fear of brain and nerve damage. I think it is rational and well justified. I had neurotoxins regularly put into my body for three and half years, my brain was dosed with cranial radiation, one of my chemo drugs that was delivered through my cerebrospinal fluid literally burned my brain, I had a three day psychotic break during which I could not be convinced that I was awake, I went through ten days of delirium that I can’t remember because I couldn’t form or access memories, I suffered nerve damage all over my body including terrible neuropathies in my hands and feet, and I was hit hard with chemotherapy-induced cognitive dysfunction (“chemobrain”), from which I am still reeling. On top of all of that, leukemia hides out in the brain and spinal cord even after it’s vanquished from the rest of the body. I’m trying my best not to get too freaked out about this, because I have no information that suggests that this is something to be freaked out about. I want to do these tests and see what they say, but the longer this goes on without any information why, the harder it becomes not let my mind wander into worrisome territory. I think I’m doing pretty well at keeping calm at the moment, considering.

Oh, excuse me. What a coincidence. I just now found out that my EMG will be in mid-February. That’s disheartening. I’ll talk to my new PCP and see if she can maybe get that moved up a bit.

Which is actually a smooth transition to my last topic cluster for this entry. I’ve been switching over to all adult doctors, which someone should have prepared me to do before I was done with chemo (even if it was simply by saying so). There is no question in my mind that Children’s Hospital was the right place for me to be treated for my leukemia, even though I was in my mid to late 20’s while under their care. I truly believe that if I had been in the care of an adult hospital, I would not be alive today. But, when treatment for my pediatric disease came to a close, it was time for me to move on from Children’s, with a few exceptions. But I didn’t know that, I didn’t figure that out until months and months too late. I figured the people that had treated me for three-and-a-half-years of chemo would be the people to see me through recovery. But I was wrong.

This isn’t a condemnation of Children’s in any way, although, I would like to let them know that in the future they need to help their adult patients transition better. There was harm done that I think could be avoided in the future. One of the biggest examples I can give is that young kids who complete chemotherapy might experience some lingering effects, but they’re usually up and bouncing off the walls pretty fast. When I was complained of extreme exhaustion for months and months after I completed chemo, explaining that I had gone from three-day-long spans of insomnia during chemo to being unable to so much as write in my blog because I was sleeping all the time, my docs scratched their heads. This just isn’t something kids experience on the level that adults do–so the pediatric doctors wouldn’t (and shouldn’t be expected to) have any experience with its rather simple diagnosis.

I was told by several of my doctors that the reason I was so exhausted, so unable to do anything besides sleep and drag myself to doctors appointments (like HBO… where’d I’d go sleep), was because I was depressed. And I was depressed; I was very, very depressed. Because I had no idea that recovery was going to be so prolonged, I had no idea the work it would take to be considered “done,” and I had no idea why I couldn’t get started on that work because I couldn’t get out of bed. When I was told that my depression was the cause of my exhaustion, I became much more depressed. I felt guilty, because it was clearly my fault that I was so tired and weak and unable to recover, and if only I’d be less depressed things would get better. And these thoughts made me more and more and more depressed.

Because they were completely wrong.

It took me until October to first see my new PCP. She is an internist that specializes in helping adults who have been through chemo. The difference in speaking to her and speaking to any of my doctors at Children’s isn’t the level of concern or intelligence, but experience with people like me. At that first appointment, she managed to do something to my deep depression with a few words that months of therapy and pills couldn’t touch at all.

“You’re right in the middle of the bell curve, Reid, you’re right where I’d expect you to be,” she told me. “Patients who are six months out from recovering from three months of chemotherapy experience the same symptoms you’re experiencing, and you were on chemotherapy for three-and-a-half years. Between your medications, your body healing itself, and fatigue that has been scientifically proven but is not entirely understood, it makes sense for you to be so exhausted.”

I won’t lie and say that all of my depression and anxiety was lifted at that moment. But a great deal of it was. I never, ever, in a million, bajillion years would have thought that someone telling me I was normal would have such an impact on me. It was as if a huge fog was removed, and a huge weight lifted. I didn’t have to feel guilty for being exhausted, I didn’t have to justify why, even though I wasn’t sick, I just didn’t feel up to doing anything. And as days went on, and I was able to truly process that and breathe so many sighs of relief, I started to feel the tiniest bit of strength and energy returning to my body. It was only a very, very small amount, not enough to come close to overpower my exhaustion, but enough to give me hope. Enough to show me that I am capable of regaining my strength and energy. I didn’t know until then, but I had been stripped of all hope.

I have that shred of hope, and that’s what I needed. This situation will never, ever be one that I would have picked if given the choice, but I know now that I can overcome it. I know I can get better. And I will, even if it takes building myself up by the tiniest of amounts, bit by bit.


4 Comments so far
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As always, and ever, until it’s no longer needed, I am pulling for you Reid. And even after it is no longer needed, which will happen, I’ll still pull for you.
And whatever I can do to lend support to your rebuilding process, let me know.

You’re writings, regardless of frequency, continue to impress, awe and amaze me, and make me laugh out loud. And what’s more is, they seem like they are improving. And I already thought you were brilliant.
I would like to buy your book, or subscribe to your newsletter, sir.

Keep building, you’ll get there Reid!


Comment by Matt Gallo 12.02.11 @ 9:38 pm

Thanks Matt. I really appreciate it. I promise that I will always sign your copy of my products for free. I will even personalize them if there is not a long line waiting behind you.

I kid, I kid. I truly can never express enough how much I appreciate your support, Matt. The kind words you always have impact so many facets of my life, from my writing to my desire to retie the disparate threads of my life so I can finally move on.

So I can do things like write a two man show! About… um… something. Probably something that involves at least two men.

probably, I guess that’d make sense.


Comment by Reid 12.03.11 @ 10:44 pm

That is a very good tip particularly to those new to the blogosphere.
Brief but very precise info… Appreciate your sharing this one.
A must read post!

Comment by natural brain nootropic 11.24.17 @ 6:31 am

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Comment by Smithf751 12.12.17 @ 8:26 pm

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