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.
Showing posts with label radiation. Show all posts
Showing posts with label radiation. Show all posts
Monday, October 24, 2011
Friday, October 21, 2011
Microwave Cooking
Everyone did their best to make the experience as pleasant as possible. The receptionists always seemed happy to see me. The nurses and technicians were friendly and helpful. The specialists were knowledgeable and skilled. I still go back every other week to see their social worker and therapist, as she helps me sort through the recent changes in my life, and the old wounds it has brought to light. The radiation oncologist had an honest and casual way about him that really clicked with me. Even the waiting room was beautiful, with a huge fish tank containing a variety of exotic salt-water fish, including several predators (I'm guessing everyone was too big to be appetizing, though the eel did take a chunk out of the lionfish's tail). None of that changed what I had to endure.
First they did a CT scan, which they aligned with MRI images from before and after my surgery, to get an accurate current picture of my brain and the disease within. They molded a sheet of perforated plastic over my head and shoulders, so tight it pressed against my eyelids, and held my lips nearly still. This mask would become my companion for the next six weeks and I would grow to hate it, even though it did me good. The idea was to hold my head perfectly still; they would be firing photons at my brain and none of us wanted them to miss. They stuck me with a pen-like needle, slightly off-center on my chest, on my forehead behind my hair line, and on either temple. The tiny blue dots left behind are in every way and by every definition, tattoos. I still have them now, and will have them for the rest of my life.
The room to which they lead me was marked with radiation warning signs. A pair of lights, one red and one green, sat above a thick vault door. A bank of computers lined up along a window to view inside. Within the room was a huge machine, a narrow black plank before it, a cradle nearest to the machine. I laid upon that bed, and set my head upon the cradle. The bed rose, and shifted back, closer to the machine, as they shut out the lights. Red lines of laserlight emerging from the ceiling and walls streaked my face. These they aligned with my new tattoos. Then came the mask. They would settle it over my face, often asking me to tilt my chin up, or down, or move up slightly. Then they would clamp it down tight, so tight I could feel my pulse in my face, and that it would leave a grid-like mark behind that would take a few minutes to fade. They placed a cushion under my knees, and handed me a foam ring on which I could hook my hands and relax my arms.
To say it was like getting an X-ray would be an understatement. The machine and bed would rotate, and instead of the one or two quick shots of an X-ray, I received five, 10-second blasts, accompanied by a loud buzzing sound. They called each blast a "field." I kept my eyes closed most of the time - it was hard to open them - and during each field I saw a blur of bright violet light, as if someone was shining something in my eyes. I would also smell an intense, unpleasant odor, like a cross between chlorine and metal.
I immediately knew there wasn't really a smell. It took me about seven treatments before I realized the light wasn't real either. They told me it wasn't that uncommon, for patients to hallucinate during treatment. My olfactory and optical nerves were being directly stimulated by the radiation. In time, the smell would fade and I didn't much mind the light. Oddly enough, I found I could prevent the smell by holding my breath. Since there was nothing to actually smell in the first place, I can only conclude that my mind's assumptions overrode the stimulation: I cannot smell while holding my breath, therefore I was not smelling anything no matter what my nerves signaled. Holding my breath was far from an ideal solution, as the mask was so tight on my nose I had trouble breathing, and after they took it off it my nose was so tender I felt as though I'd been slugged. Eventually they cut the nose out for me. The masks's nose. Not mine.
The treatments lasted about fifteen minutes each, from mask on to mask off. The technician told me if I ever needed to stop I could just raise my hand and she'd be there in two minutes. That's how long it took to get the door open.
The radiation machine is surprisingly sensitive. Looking up at it, it looked like a pane of glass with striations of metal within, which could open and close and usually formed a sort of crescent shape. These arms would vibrate during a field, and I was told that if they couldn't vibrate quickly enough, or if there was any sort of power variance, the field would end immediately. Another safety precaution.
I find it fascinating how radiation treatment actually works. I'm going to go a bit sciency here and this is all off the top of my head and from my best understanding, so forgive me if I mess up any details.
Healthy, normal cells are actually highly resistant to radiation. It takes quite a lot to cause any real damage. The problem is cell reproduction. During mitosis, the DNA lacks its usual protection and is susceptible to radiation damage. Now, because cancer cells reproduce much more often than healthy cells, they are in this vulnerable state more often. They are also often less "stable" than healthy cells. While radiation can (and does) damage healthy tissue, it damages diseased tissue much more easily and often.
From what I understand, the radiation itself attacks the DNA strand both directly and indirectly. The photon's wavelength matches the width of DNA, making it easier to strike directly. They also interact with the water molecules surrounding the DNA to create a burst of free radicals, which can also damage the DNA. That means that during radiation treatment, drinking things that are high in anti-oxidants can actually be detrimental.
So the idea is to damage the DNA so that the cell can no longer divide. Sometimes this takes a few generations as DNA damage adds up. They irradiate everything within 2cm of known cancer tissue, in an attempt to kill any remaining cancer cells that were inoperable or invisible, as they tend to roam away from the primary tumor. My total dose was 5,400 sieverts (I believe that's the unit of measure they use), over 30 treatments. My doctor said that they usually give between 4,500 Sv and 5,400 Sv, finding that any less than that was ineffectual and any more than that caused too much damage to healthy tissue. The internet says a typical treatment is 45-54 Gy (gray). I don't know if one grays equals 100 sieverts, or if I just searched for radiation therapy terms and thought that "sievert" sounded like the word he said. My doctor told me most people just call them "rads," but that that's not really accurate.
The big question is, if this can damage cancerous DNA then can't it also damage healthy DNA? It can. It can even create new cancers (called secondaries), or accelerate existing ones. Even when it doesn't, there are other side effects I'll describe next time. It's all about risk versus reward.
Until my MRI on the 26th, I won't have much of an idea which won out in my case.
First they did a CT scan, which they aligned with MRI images from before and after my surgery, to get an accurate current picture of my brain and the disease within. They molded a sheet of perforated plastic over my head and shoulders, so tight it pressed against my eyelids, and held my lips nearly still. This mask would become my companion for the next six weeks and I would grow to hate it, even though it did me good. The idea was to hold my head perfectly still; they would be firing photons at my brain and none of us wanted them to miss. They stuck me with a pen-like needle, slightly off-center on my chest, on my forehead behind my hair line, and on either temple. The tiny blue dots left behind are in every way and by every definition, tattoos. I still have them now, and will have them for the rest of my life.
The room to which they lead me was marked with radiation warning signs. A pair of lights, one red and one green, sat above a thick vault door. A bank of computers lined up along a window to view inside. Within the room was a huge machine, a narrow black plank before it, a cradle nearest to the machine. I laid upon that bed, and set my head upon the cradle. The bed rose, and shifted back, closer to the machine, as they shut out the lights. Red lines of laserlight emerging from the ceiling and walls streaked my face. These they aligned with my new tattoos. Then came the mask. They would settle it over my face, often asking me to tilt my chin up, or down, or move up slightly. Then they would clamp it down tight, so tight I could feel my pulse in my face, and that it would leave a grid-like mark behind that would take a few minutes to fade. They placed a cushion under my knees, and handed me a foam ring on which I could hook my hands and relax my arms.
To say it was like getting an X-ray would be an understatement. The machine and bed would rotate, and instead of the one or two quick shots of an X-ray, I received five, 10-second blasts, accompanied by a loud buzzing sound. They called each blast a "field." I kept my eyes closed most of the time - it was hard to open them - and during each field I saw a blur of bright violet light, as if someone was shining something in my eyes. I would also smell an intense, unpleasant odor, like a cross between chlorine and metal.
I immediately knew there wasn't really a smell. It took me about seven treatments before I realized the light wasn't real either. They told me it wasn't that uncommon, for patients to hallucinate during treatment. My olfactory and optical nerves were being directly stimulated by the radiation. In time, the smell would fade and I didn't much mind the light. Oddly enough, I found I could prevent the smell by holding my breath. Since there was nothing to actually smell in the first place, I can only conclude that my mind's assumptions overrode the stimulation: I cannot smell while holding my breath, therefore I was not smelling anything no matter what my nerves signaled. Holding my breath was far from an ideal solution, as the mask was so tight on my nose I had trouble breathing, and after they took it off it my nose was so tender I felt as though I'd been slugged. Eventually they cut the nose out for me. The masks's nose. Not mine.
The treatments lasted about fifteen minutes each, from mask on to mask off. The technician told me if I ever needed to stop I could just raise my hand and she'd be there in two minutes. That's how long it took to get the door open.
The radiation machine is surprisingly sensitive. Looking up at it, it looked like a pane of glass with striations of metal within, which could open and close and usually formed a sort of crescent shape. These arms would vibrate during a field, and I was told that if they couldn't vibrate quickly enough, or if there was any sort of power variance, the field would end immediately. Another safety precaution.
I find it fascinating how radiation treatment actually works. I'm going to go a bit sciency here and this is all off the top of my head and from my best understanding, so forgive me if I mess up any details.
Healthy, normal cells are actually highly resistant to radiation. It takes quite a lot to cause any real damage. The problem is cell reproduction. During mitosis, the DNA lacks its usual protection and is susceptible to radiation damage. Now, because cancer cells reproduce much more often than healthy cells, they are in this vulnerable state more often. They are also often less "stable" than healthy cells. While radiation can (and does) damage healthy tissue, it damages diseased tissue much more easily and often.
From what I understand, the radiation itself attacks the DNA strand both directly and indirectly. The photon's wavelength matches the width of DNA, making it easier to strike directly. They also interact with the water molecules surrounding the DNA to create a burst of free radicals, which can also damage the DNA. That means that during radiation treatment, drinking things that are high in anti-oxidants can actually be detrimental.
So the idea is to damage the DNA so that the cell can no longer divide. Sometimes this takes a few generations as DNA damage adds up. They irradiate everything within 2cm of known cancer tissue, in an attempt to kill any remaining cancer cells that were inoperable or invisible, as they tend to roam away from the primary tumor. My total dose was 5,400 sieverts (I believe that's the unit of measure they use), over 30 treatments. My doctor said that they usually give between 4,500 Sv and 5,400 Sv, finding that any less than that was ineffectual and any more than that caused too much damage to healthy tissue. The internet says a typical treatment is 45-54 Gy (gray). I don't know if one grays equals 100 sieverts, or if I just searched for radiation therapy terms and thought that "sievert" sounded like the word he said. My doctor told me most people just call them "rads," but that that's not really accurate.
The big question is, if this can damage cancerous DNA then can't it also damage healthy DNA? It can. It can even create new cancers (called secondaries), or accelerate existing ones. Even when it doesn't, there are other side effects I'll describe next time. It's all about risk versus reward.
Until my MRI on the 26th, I won't have much of an idea which won out in my case.
Thursday, October 20, 2011
I am not a plot element
Before I begin, let me say that yes, I'm going somewhere with this, and no, I haven't seen 50/50 but I hear it's pretty good and based on the director's personal experience with cancer.
The media has done a tremendous disservice to cancer patients. I'm not talking about the news, or the "news," or the feel-good quasi-science of Dr. Oz, or the feel-good pseudo-science of Oprah. I specifically mean entertainment.
In movies, there are four kinds of cancer patients.
1) Part of the background in hospitals, their only function to fill a bed. Maybe that bed will be empty later if the director feels like being subtle and poignant.
2) Has something difficult to notice - often leukemia or lymphoma - ends up bald, acts a little tired or weak, but usually gets better and is a stronger person for it while their friends and relatives admire their strength and bravery.
3) Has lung cancer, which means they cough now and then and approach life with a "nothing to lose" attitude, but are otherwise perfectly fine.
4) Has brain cancer, which is shorthand for, "this person is going to die in the most horrible way imaginable and there is absolutely nothing anyone can do about it."
Needless to say, number 4 there strikes a particular chord with me. Specifically I recall The Green Mile, where a secondary character is given brain cancer for no reason other than to show that the Coffey can cure literally anything. There's a pun in there but I'm not in the mood. Haven't had my coffee. ...Dammit.
Other than the inherent fatalism involved, I don't like the media's portrayal of brain cancer. I don't know if they've ever shown a brain cancer patient with anything but the most distorted, fleeting moments of anything even resembling clarity. Other than that they're all delusions and screaming in pain. And let's be clear, there are people who end up like that. This is a disease that consumes the brain. But it typically doesn't happen nearly so fast.
Brain cancer patients often have a remarkably high quality of life, followed by a rapid decline before death. From what I've seen and heard, most brain cancers are discovered by accident. Think about that for a moment. That means that the cancer had so little impact that the patient didn't even realize they were sick. And after they've found out, I think we can all forgive a reasonable degree of bedridden screaming. But I picked myself up again. In fact, I skipped over the screaming entirely, which is actually something that's concerned me, and something I may address later. So sure, I may spend my final days breathing through a tube, unaware of who or where I am, clawing at imaginary phantoms. Or I might not. I'm not doing that right now. Right now, I'm living on my own, I'm working full time, and I'm continuing my life.
A bigger problem, one that applies to all forms of cancer, is the media portrayal of chemotherapy. As I mentioned before, I was very reluctant to go with chemo. That's because I was terrified of it, as are most people. In movies, they depict chemo as bringing the patient as close to death as possible, so that they may avoid actual death for a little while longer. They lose all their hair, all their color, and all their weight until they look like little more than a skeleton. They lack the strength to stand, or speak, or even hold up their head. They constantly vomit, and have tubes surgically implanted into their chests to make it easier to pump them full of poison on a near-daily basis.
And don't get me wrong, there are people who must endure exactly that. I've come across a few, in the same hospital, seeing the same doctors. My heart truly goes out to those people, and I can't imagine trying to live like that. I can't imagine that they can. However, that's only the most extreme form of chemotherapy. There are much lower doses. Up until I met with Dr. Cancer, I didn't even know there was such a thing as orally administered chemotherapy. More importantly, I didn't know that there are other medications given in tandem with chemotherapy that can completely negate many of its worst effects. I took 165mg of chemo every single day for 45 days, along with a Zofran to counteract the nausea, and a stool softener to help with the constipation caused by the Zofran. I didn't get the slightest bit nauseous. The worst I suffered from that was a little stomach pain now and then. I was fatigued, but not so fatigued that I couldn't continue to work, and I did work, all the way through my treatment.
That's not to say that taking chemotherapy - even a low dose - isn't scary. The tablets look like serious medication; little two-colored capsules marked simply, their contents loose and rattling. The bottles came in a bag marked with a huge biohazard symbol. The bag included instructions for any caregivers to administer the medication to wear gloves, and never allow the capsules to come into contact with their skin. And I had to swallow them.
There are also plenty of risks and restrictions while taking chemotherapy. It attacks all replicating cells in the body, including healthy ones. Wounds heal very slowly, or not at all, the immune system is compromised, white and red blood cell counts drop; I wasn't even allowed to shave with a razor. Taken in high enough concentrations for a long enough period, it can kill bone marrow and cause leukemia. It saturates the body. I could smell it in my sweat. Dr. Cancer told me that if I had unprotected sex, I'd give my hypothetical lady friend a dose of chemo. It isn't always as bad as it is in movies, but make no mistake. It is poison. Its purpose is to attack the body. I know that it helps and I never regretted taking it, but every time I swallowed another pill I just knew there had to be a better way. If only we could find it.
Of course, I wasn't the only person mislead about chemotherapy. My image was a common one. So common, in fact, that most people seem to equate cancer with severe chemotherapy. People kept telling me how good my color was, and how healthy I seemed. They can see the hair I still have in the back of my head, below my bandana (one that I wear for a very good reason). They think that since I look healthy, I must be healthy.
Some free advice to any caregivers and well-wishers: do not ask a cancer patient if they're going to be all right unless you're absolutely sure they will be, or if you're ready for an honest answer. I still hold on to the hope that some day I may be healthy. Right now, I have brain cancer.
So the chemotherapy wasn't nearly as bad as I'd expected or been lead to believe.
If only I could say the same about the radiation.
The media has done a tremendous disservice to cancer patients. I'm not talking about the news, or the "news," or the feel-good quasi-science of Dr. Oz, or the feel-good pseudo-science of Oprah. I specifically mean entertainment.
In movies, there are four kinds of cancer patients.
1) Part of the background in hospitals, their only function to fill a bed. Maybe that bed will be empty later if the director feels like being subtle and poignant.
2) Has something difficult to notice - often leukemia or lymphoma - ends up bald, acts a little tired or weak, but usually gets better and is a stronger person for it while their friends and relatives admire their strength and bravery.
3) Has lung cancer, which means they cough now and then and approach life with a "nothing to lose" attitude, but are otherwise perfectly fine.
4) Has brain cancer, which is shorthand for, "this person is going to die in the most horrible way imaginable and there is absolutely nothing anyone can do about it."
Needless to say, number 4 there strikes a particular chord with me. Specifically I recall The Green Mile, where a secondary character is given brain cancer for no reason other than to show that the Coffey can cure literally anything. There's a pun in there but I'm not in the mood. Haven't had my coffee. ...Dammit.
Other than the inherent fatalism involved, I don't like the media's portrayal of brain cancer. I don't know if they've ever shown a brain cancer patient with anything but the most distorted, fleeting moments of anything even resembling clarity. Other than that they're all delusions and screaming in pain. And let's be clear, there are people who end up like that. This is a disease that consumes the brain. But it typically doesn't happen nearly so fast.
Brain cancer patients often have a remarkably high quality of life, followed by a rapid decline before death. From what I've seen and heard, most brain cancers are discovered by accident. Think about that for a moment. That means that the cancer had so little impact that the patient didn't even realize they were sick. And after they've found out, I think we can all forgive a reasonable degree of bedridden screaming. But I picked myself up again. In fact, I skipped over the screaming entirely, which is actually something that's concerned me, and something I may address later. So sure, I may spend my final days breathing through a tube, unaware of who or where I am, clawing at imaginary phantoms. Or I might not. I'm not doing that right now. Right now, I'm living on my own, I'm working full time, and I'm continuing my life.
A bigger problem, one that applies to all forms of cancer, is the media portrayal of chemotherapy. As I mentioned before, I was very reluctant to go with chemo. That's because I was terrified of it, as are most people. In movies, they depict chemo as bringing the patient as close to death as possible, so that they may avoid actual death for a little while longer. They lose all their hair, all their color, and all their weight until they look like little more than a skeleton. They lack the strength to stand, or speak, or even hold up their head. They constantly vomit, and have tubes surgically implanted into their chests to make it easier to pump them full of poison on a near-daily basis.
And don't get me wrong, there are people who must endure exactly that. I've come across a few, in the same hospital, seeing the same doctors. My heart truly goes out to those people, and I can't imagine trying to live like that. I can't imagine that they can. However, that's only the most extreme form of chemotherapy. There are much lower doses. Up until I met with Dr. Cancer, I didn't even know there was such a thing as orally administered chemotherapy. More importantly, I didn't know that there are other medications given in tandem with chemotherapy that can completely negate many of its worst effects. I took 165mg of chemo every single day for 45 days, along with a Zofran to counteract the nausea, and a stool softener to help with the constipation caused by the Zofran. I didn't get the slightest bit nauseous. The worst I suffered from that was a little stomach pain now and then. I was fatigued, but not so fatigued that I couldn't continue to work, and I did work, all the way through my treatment.
That's not to say that taking chemotherapy - even a low dose - isn't scary. The tablets look like serious medication; little two-colored capsules marked simply, their contents loose and rattling. The bottles came in a bag marked with a huge biohazard symbol. The bag included instructions for any caregivers to administer the medication to wear gloves, and never allow the capsules to come into contact with their skin. And I had to swallow them.
There are also plenty of risks and restrictions while taking chemotherapy. It attacks all replicating cells in the body, including healthy ones. Wounds heal very slowly, or not at all, the immune system is compromised, white and red blood cell counts drop; I wasn't even allowed to shave with a razor. Taken in high enough concentrations for a long enough period, it can kill bone marrow and cause leukemia. It saturates the body. I could smell it in my sweat. Dr. Cancer told me that if I had unprotected sex, I'd give my hypothetical lady friend a dose of chemo. It isn't always as bad as it is in movies, but make no mistake. It is poison. Its purpose is to attack the body. I know that it helps and I never regretted taking it, but every time I swallowed another pill I just knew there had to be a better way. If only we could find it.
Of course, I wasn't the only person mislead about chemotherapy. My image was a common one. So common, in fact, that most people seem to equate cancer with severe chemotherapy. People kept telling me how good my color was, and how healthy I seemed. They can see the hair I still have in the back of my head, below my bandana (one that I wear for a very good reason). They think that since I look healthy, I must be healthy.
Some free advice to any caregivers and well-wishers: do not ask a cancer patient if they're going to be all right unless you're absolutely sure they will be, or if you're ready for an honest answer. I still hold on to the hope that some day I may be healthy. Right now, I have brain cancer.
So the chemotherapy wasn't nearly as bad as I'd expected or been lead to believe.
If only I could say the same about the radiation.
Wednesday, October 19, 2011
Regression
Throughout this whole ordeal, my parents have given me a great deal of logistical support. They've handled the financial side of it, and the scheduling. My job has been to tolerate the treatments and try to get better. For that, I will always be grateful.
But let me tell you something about my mother. She complains that the people around her - her friends, her family, her co-workers - don't understand what something is like unless they are going through it themselves. She told me long stories of how she has to endure people asking stupid questions or making stupid offers. One of her favorite things to say was, "they all offer to help in any way they can but once I tell them how they can help that's not what they want to do." If she was in the same room as me, she was usually going on about the latest offense or hardship at the hands of oblivious well-wishers.
It didn't seem to occur to her that I might have other things on my mind. Perhaps even my own problems. She didn't have the slightest idea what it was like having brain cancer (though to be fair, I haven't the slightest idea what it's like to have a son with brain cancer). After about a week of recovery she was used to the idea and I was doing well, so she started acting like I was just fine. Occasionally I'd catch a brief glimpse of her usual self, of dismissing my concerns and troubles until she remembered, oh yeah, maybe my concerns and troubles are really freaking legitimate right now. By week three, I was basically a teenager again, in her eyes: expected to care for myself - which I could - but devoid of any of the wisdom or experience that allows me to make informed decisions. I started to remember why I'd moved out.
Starting at the time I was diagnosed, my father tried to give me some degree of agency, in that he at least asked for my go-ahead on all important (and unimportant) decisions relating to my own care. That was a valuable thing; cancer has a way of making one feel helpless and out of control. The thing is, neither he nor my mother really respected my decisions unless they were "correct." If I made the wrong call, they would ask the question again. And again, and again, until I made the "right" decision. Sometimes over silly things (while in the hospital I told my mother thrice that no, I would not like a blanket, only to catch her trying to sneak one on me while she thought I was asleep). Sometimes over more serious things, like if I wanted to go back on steroids or not (I did not, which was apparently incorrect). They would ask until I got angry. Then they would ask why I was so "grumpy."
Grumpy, as if my emotions were the result of some irrational mood, like I was a baby who had missed his nap, and that I would clearly see the wisdom in their decisions if they asked later when I was feeling better.
To those of you providing care for a cancer patient, I would suggest this: if there is a decision to be made, ask the patient. If the patient gives you an answer, respect it. If you piss off the patient by not respecting it, do not dismiss their legitimate anger. Otherwise, you have not given them agency. Rather you have taken it away and belittled them for ever thinking they had it in the first place.
As far as actual treatments went, there was not much to do during those first weeks of recovery. If I had any new or sudden symptoms we had to report them but otherwise, we were waiting. We were told the pathology - a dissection of the tumor and analysis of its cells - would take about two weeks. Until that was complete, we wouldn't know what I had other than a "glioma." Based on the MRI of my tumor, the oncologists we'd seen all believed it was a Grade 2 though they saw signs that it might be becoming a Grade 3 (not to be confused with "Stage 2" and "Stage 3"). Grade 2 is known as "low grade." Grades 3 and 4, "high grade." In a low grade brain cancer, life expectancy is measured in years. In a high grade, months. A cancer is graded by the fastest growing cells, so there is no such thing as a cancer that is "mostly Grade 2."
We were told that mine was "mostly Grade 2." A little after two weeks, after they'd delayed the diagnosis by a few days to make absolutely sure it was correct, my father spoke to Dr. Administrator, who said there was no reason to believe I wouldn't live "a long life." My mother wanted it in writing, as if that would somehow make a difference, or be defensible if it turned out she was wrong. A few days later, Dr. Administrator told my mother that my cancer was "mostly Grade 2." That means, "Grade 3." I don't know how the actual conversation went and would like to think Dr. Administrator meant, "what we have analyzed so far is Grade 2 and we've analyzed most of the tumor." I have no idea.
They completed the pathology the next day and faxed us the results. My father said it didn't contain any useful information or even a diagnosis, but it absolutely did. It was simply worded as a medical document rather than a, "Dear Patient" letter. It left me confused, as it determined I had two kinds of cancer (oligodendrocytoma and astrocytoma), but both were marked "level 2." I didn't know exactly what that meant but assumed it couldn't have meant Grade 2, as we'd been told it wasn't entirely Grade 2.
Except it was. The day after that we went to the city to speak with the oncologist and he explained the results to us. My cancer was primarily an astrocytoma but did contain some oligodendrocytoma cells, hence the term, "oligo-astrocytoma," and that they had found nothing but Grade 2 cells. Wonderful news (the oncologist looked at my mother a bit funny when she showed relief), but I concluded that Dr. Administrator really shouldn't have said anything. I think my mother is partially to blame for pushing her, though, and it's entirely possible she misinterpreted what was actually said.
When the two-week deadline came and went, my mother was livid. She wondered how they could do this, why they were dragging their feet, and insisted my father call every day to demand the results. Even after I explained to her that they were being very careful, making absolutely sure they didn't miss anything, it still wasn't good enough. She would have preferred the wrong answer, so long as she didn't have to wait any longer.
As Dr. Administrator had said, it wasn't for our convenience. It was brain surgery.
I tried not to think about the fact that they'd left some cancer cells in my brain. Those, they couldn't analyze. Some of them were some of the youngest, newest cells in the mass. Some of them could have been - could still be - Grade 3.
I had a number of treatment options available. The first was to do nothing. My oncologist - let's call him Dr. Cancer - recommended against that one and I agreed with his assessment, but it was very reassuring to know that it would not have been medically irresponsible merely to keep an eye on things. What Dr. Cancer recommended was, due to the location and transaxial nature of the cancer as well as my young age, we treat it like GBM4. That's a Grade 4 cancer, and possibly the most serious. Life expectancy is measured in weeks, so they throw everything they've got at it. That meant radiation therapy and chemotherapy.
Chemo tends not to be all that effective against astrocytoma, which lacks 1p/19q deletion, and I assume that makes a brain cancer more susceptible to the treatment. Therefore he recommended a low dose of chemo, 165mg daily, taken orally. Not to treat the cancer directly, he said, but because there was some evidence that even a small amount could boost the effectiveness of the radiation treatment. He stressed that there was not enough data on the method to make it an accepted treatment, and rather it was closer to a clinical trial, but he felt confident that it would yield positive results with only a small risk. One of the potential side-effects of chemotherapy is leukemia, though he reassured me that it was extremely rare and only associated with higher doses over much longer periods. I told him I would definitely go for the radiation but would need some time to think about the chemotherapy. It's a very scary word, after all. The next day we phoned him and let him know that I would take his full recommendation, both the radiation and the chemotherapy.
We would start on August 8th.
But let me tell you something about my mother. She complains that the people around her - her friends, her family, her co-workers - don't understand what something is like unless they are going through it themselves. She told me long stories of how she has to endure people asking stupid questions or making stupid offers. One of her favorite things to say was, "they all offer to help in any way they can but once I tell them how they can help that's not what they want to do." If she was in the same room as me, she was usually going on about the latest offense or hardship at the hands of oblivious well-wishers.
It didn't seem to occur to her that I might have other things on my mind. Perhaps even my own problems. She didn't have the slightest idea what it was like having brain cancer (though to be fair, I haven't the slightest idea what it's like to have a son with brain cancer). After about a week of recovery she was used to the idea and I was doing well, so she started acting like I was just fine. Occasionally I'd catch a brief glimpse of her usual self, of dismissing my concerns and troubles until she remembered, oh yeah, maybe my concerns and troubles are really freaking legitimate right now. By week three, I was basically a teenager again, in her eyes: expected to care for myself - which I could - but devoid of any of the wisdom or experience that allows me to make informed decisions. I started to remember why I'd moved out.
Starting at the time I was diagnosed, my father tried to give me some degree of agency, in that he at least asked for my go-ahead on all important (and unimportant) decisions relating to my own care. That was a valuable thing; cancer has a way of making one feel helpless and out of control. The thing is, neither he nor my mother really respected my decisions unless they were "correct." If I made the wrong call, they would ask the question again. And again, and again, until I made the "right" decision. Sometimes over silly things (while in the hospital I told my mother thrice that no, I would not like a blanket, only to catch her trying to sneak one on me while she thought I was asleep). Sometimes over more serious things, like if I wanted to go back on steroids or not (I did not, which was apparently incorrect). They would ask until I got angry. Then they would ask why I was so "grumpy."
Grumpy, as if my emotions were the result of some irrational mood, like I was a baby who had missed his nap, and that I would clearly see the wisdom in their decisions if they asked later when I was feeling better.
To those of you providing care for a cancer patient, I would suggest this: if there is a decision to be made, ask the patient. If the patient gives you an answer, respect it. If you piss off the patient by not respecting it, do not dismiss their legitimate anger. Otherwise, you have not given them agency. Rather you have taken it away and belittled them for ever thinking they had it in the first place.
As far as actual treatments went, there was not much to do during those first weeks of recovery. If I had any new or sudden symptoms we had to report them but otherwise, we were waiting. We were told the pathology - a dissection of the tumor and analysis of its cells - would take about two weeks. Until that was complete, we wouldn't know what I had other than a "glioma." Based on the MRI of my tumor, the oncologists we'd seen all believed it was a Grade 2 though they saw signs that it might be becoming a Grade 3 (not to be confused with "Stage 2" and "Stage 3"). Grade 2 is known as "low grade." Grades 3 and 4, "high grade." In a low grade brain cancer, life expectancy is measured in years. In a high grade, months. A cancer is graded by the fastest growing cells, so there is no such thing as a cancer that is "mostly Grade 2."
We were told that mine was "mostly Grade 2." A little after two weeks, after they'd delayed the diagnosis by a few days to make absolutely sure it was correct, my father spoke to Dr. Administrator, who said there was no reason to believe I wouldn't live "a long life." My mother wanted it in writing, as if that would somehow make a difference, or be defensible if it turned out she was wrong. A few days later, Dr. Administrator told my mother that my cancer was "mostly Grade 2." That means, "Grade 3." I don't know how the actual conversation went and would like to think Dr. Administrator meant, "what we have analyzed so far is Grade 2 and we've analyzed most of the tumor." I have no idea.
They completed the pathology the next day and faxed us the results. My father said it didn't contain any useful information or even a diagnosis, but it absolutely did. It was simply worded as a medical document rather than a, "Dear Patient" letter. It left me confused, as it determined I had two kinds of cancer (oligodendrocytoma and astrocytoma), but both were marked "level 2." I didn't know exactly what that meant but assumed it couldn't have meant Grade 2, as we'd been told it wasn't entirely Grade 2.
Except it was. The day after that we went to the city to speak with the oncologist and he explained the results to us. My cancer was primarily an astrocytoma but did contain some oligodendrocytoma cells, hence the term, "oligo-astrocytoma," and that they had found nothing but Grade 2 cells. Wonderful news (the oncologist looked at my mother a bit funny when she showed relief), but I concluded that Dr. Administrator really shouldn't have said anything. I think my mother is partially to blame for pushing her, though, and it's entirely possible she misinterpreted what was actually said.
When the two-week deadline came and went, my mother was livid. She wondered how they could do this, why they were dragging their feet, and insisted my father call every day to demand the results. Even after I explained to her that they were being very careful, making absolutely sure they didn't miss anything, it still wasn't good enough. She would have preferred the wrong answer, so long as she didn't have to wait any longer.
As Dr. Administrator had said, it wasn't for our convenience. It was brain surgery.
I tried not to think about the fact that they'd left some cancer cells in my brain. Those, they couldn't analyze. Some of them were some of the youngest, newest cells in the mass. Some of them could have been - could still be - Grade 3.
I had a number of treatment options available. The first was to do nothing. My oncologist - let's call him Dr. Cancer - recommended against that one and I agreed with his assessment, but it was very reassuring to know that it would not have been medically irresponsible merely to keep an eye on things. What Dr. Cancer recommended was, due to the location and transaxial nature of the cancer as well as my young age, we treat it like GBM4. That's a Grade 4 cancer, and possibly the most serious. Life expectancy is measured in weeks, so they throw everything they've got at it. That meant radiation therapy and chemotherapy.
Chemo tends not to be all that effective against astrocytoma, which lacks 1p/19q deletion, and I assume that makes a brain cancer more susceptible to the treatment. Therefore he recommended a low dose of chemo, 165mg daily, taken orally. Not to treat the cancer directly, he said, but because there was some evidence that even a small amount could boost the effectiveness of the radiation treatment. He stressed that there was not enough data on the method to make it an accepted treatment, and rather it was closer to a clinical trial, but he felt confident that it would yield positive results with only a small risk. One of the potential side-effects of chemotherapy is leukemia, though he reassured me that it was extremely rare and only associated with higher doses over much longer periods. I told him I would definitely go for the radiation but would need some time to think about the chemotherapy. It's a very scary word, after all. The next day we phoned him and let him know that I would take his full recommendation, both the radiation and the chemotherapy.
We would start on August 8th.
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