It was all very well to say `Drink me,' but the wise little Alice was not going to do THAT in a hurry. "No, I'll look first," she said, `and see whether it's marked 'poison' or not..." ...she had never forgotten that, if you drink much from a bottle marked `poison,' it is almost certain to disagree with you, sooner or later.
Today is Thursday, February 28, 2013.
The person in the picture is me - just about five years ago.
In January and early February of 2008 I underwent four rounds of chemotherapy (or "infusion" as they call it in the hospital). Like Alice, I have realized what it means to drink something marked "poison." The drugs I was taking during infusion were so poison that my chemo nurse had to wear a plastic gown all over her body, just in case any of the drug should spill on her skin and cause acid burn. Keep in mind that they were injecting this poison directly into my veins! I have no doubt that there was a bio-hazard sign on the cupboard where they kept the chemotherapy medications, and with good reason. But this realization took years to sink in.
By this time five years ago, the hair on my head was gone, as was the hair on my arms and legs, underarms and private parts. My eyelashes were decimated; only my eyebrows seemed to escape damage. As another cancer survivor once explained it, "I could have qualified for the U.S. Olympic Swim Team." It was hard to look at myself in the mirror, and I hated my shadow, which resembled a monster. Unfortunately, I am not one of those women who have a beautifully-shaped skull.
I'd been warned about the hair loss, and bought a synthetic wig in a style that was close to my own. A stylist trimmed it while it was on my head, so it looked "OK," but I was uncomfortable wearing it, and opted instead for soft cotton knit chemo caps, color-coordinated with whatever I was wearing that day. Some second-graders that I taught were particularly fond of my red cap with white polka-dots. They begged me to show them my bald head, and one day I decided to grant their request, telling them sternly that they mustn't laugh. Some of them wanted to, but you could have heard a pin drop when I took off my cap. Two little Hmong girls (refugees from Laos) were sitting on the floor right in front of me. Their English comprehension skills were not the best, so both little girls were shocked to their core when they saw that my hair was gone. They had not really understood what was being discussed. You just never know what kids are thinking, what they really understand.
One of the students asked whether cancer was catching, and I was pleased to tell them that it was not. Before I had my mastectomy, I had explained to this group of kids that the doctor had found cancer in three places, and that I was going to have an operation (without going into any detail). At the time, one of the boys - probably thinking that I was talking about pimples - had remarked, "Why don't you just pop them, Miss L.?" (Two years later, this same boy lost his mother to cancer. What a cruel answer to a child's innocent question!)
The hair finally came back, but what came in first felt like duck-fuzz. Later, I got some coarse, kinky hair that was almost pure white. It took at least a year for the hair to grow back normally, albeit much more silver gray than blond. These days the color seems to be coming back slightly, but one stubborn cowlick that never bothered me before chemo refuses to be completely tamed.
Most of us are now aware of the more common short-term side effects of chemotherapy, such as losing all one's hair or being violently ill. Everyone reacts to chemo a little differently. My side effects also included having just about every fluid in my body dry up: tears, sweat, saliva, and that slick mucous that the body produces to make a bowel movement more comfortable. (Most people don't even pay attention to that last one - until, of course, it goes away. Then you have to pay attention.) This "drying up" side-effect produced other side-effects. I could not cry and my eyes were glued shut every morning. It took special, industrial-strength eye drops to tackle this one. I had trouble swallowing and food in general just tasted terrible. I was given some special mouthwash to help with dry mouth, but there was nothing that could improve the taste of my food. Daily bowel movements became torture, and I remember screaming every time I passed a stool. Yes, they had something for that, too, but it wasn't much help.
At one point, after my second round of chemo, I was invited to have a leisurely breakfast with a friend one Saturday morning. I ordered a Denver-style omelet, a specialty of the house, and ate the whole thing. I totally forgot my chemo nurse's warning about eating onions. A day later, and for three days after that, I was sick as a dog, and so grateful for the lady who had agreed to be my teaching sub at a moment's notice anytime during my chemotherapy.
Fortunately, my chemo took place in the winter, so I didn't miss the sweat.
The loss of energy was a big side effect. Before the chemo, I'd experienced fatigue, but comparing normal fatigue with what I felt while on the chemo drugs, I have to say that it's just not the same. I had to plan my days carefully, especially the days when I went to work. I left school right after the kids, and if I didn't get all my errands done by about five o'clock, that was too bad. I was generally in bed by six p.m. and down for the entire night. This kind of fatigue is not something that will go away after you rest for a few minutes. It's a total body shut-down. It's a that's-all-for-today kind of fatigue. It's a sit-down-right-now-or-you-will-keel-over fatigue. It took a couple of years to begin to get my strength back. Even today, I can no longer go to a shopping mall with no particular goal in mind. I know exactly which store I need to check and where, exactly it is located within the mall. I park by the door closest to the store I have in mind, and never shop for more than one or two things at a time. I know where all the chairs and benches are, and I conserve my strength carefully, knowing that if I fail to do this, I will not make it back to my car.
I remember getting out my vacuum cleaner and being able to vacuum only one quarter of my living room per day. I would move furniture and vacuum one part, then stop and leave the vacuum cleaner where I stopped, to mark what I'd done. The next day I would vacuum another section. I know other women who have had this happen to them, and I recall how embarrassed one woman was to tell me how long it took her to vacuum her living room rug. It's depressing to have to spend several days doing a chore that normally takes no more than fifteen or twenty minutes. Dishes were another thing that fell by the wayside. I couldn't seem to stand in one place without pain for more than about ten minutes, so I would wash and rinse as many dishes as I could, then leave the rest to soak, hoping that I could finish the next day. Naturally, I kept on using dishes, so it turned into one of those chores that never seemed to end. Doing laundry was excruciating. Lugging a bag of laundry to the laundry room, was bad enough, but then there were the walks back and forth to put in another load, or to transfer loads from the washer to the dryer. That was another chore that took days and days.
There were other side-effects, many of which came and went with some regularity each time I had a round of chemo, such as sores on the inside of my mouth and tender places on my tongue. Some side-effects stayed with me as long as the drugs were affecting my body and went away slowly after the chemo was all finished. The soles of my feet felt strange - the skin was thick and rubbery, not like human skin at all. I always wondered whether my cat could smell the drugs in my body. She stopped coming up onto my bed in the morning the entire time I was undergoing chemo and didn't start again until well after all the drugs had completely exited my body.
There were some long-term side effects that I wasn't warned about. One was a significant hearing loss. I thought maybe it was just that my hearing aids, long past their prime, were finally wearing out. When my audiologist tested me, she looked at records going back over two decades and asked me what was going on in my life. When I told her about the chemo, she nodded her head, and explained that she had seen a lot of people come in with a sudden change in ability to hear, and that the vast majority of those had experienced chemotherapy. When I told my oncologist about the hearing loss, he didn't bat an eyelash. "I'm sorry," was his only comment. It appeared that he was aware of this side-effect, and I wondered why they hadn't bothered to warn me. It got so bad that I could no longer hear messages on my phone at work, and I found myself begging the staff to email me or put a note in my physical mailbox, rather than call and leave a voicemail message. When a parent called, I had to ask someone else to listen to the message and tell me what they said. It was true that my hearing aids were wearing out, but what I had was no longer appropriate for my hearing loss. Since I was in a debt-management program, I couldn't afford to buy new hearing aids, and ended up waiting until I paid off my credit card balances completely. The hearing aids I got at a discount outlet were about half the cost of ones sold by private audiologists, but they still cost me $3,000. I got them only a month or two before I retired. The first day I wore them to work, one of my students came up to me and asked why I was talking so softly. I realized then that I had been practically shouting just so I could hear myself talk, and this had been going on for years.
Another long-term side effect is something that many cancer survivors, but very few doctors, seem aware of. The cancer patients call it "chemo brain." I read an article a few months ago about this. The article said that it had only recently become clear that "chemo brain" is a side-effect of chemotherapy that can persist for many years after the treatment ends. When I was first told about this side-effect, I thought the lady was joking. I soon found out that she was not.
It's hard to put into words what "chemo brain" is all about. When I realized that I would have to spend a lot of time at home recuperating from the chemo treatments, I was actually kind of excited about having so much free time to do things I enjoyed. I planned to read a lot of good books, listen to music, work on the book I was writing - all things I love to do. Fortunately, I was warned to get all my long-range lesson planning done before chemo, and I'm glad now that I took that advice. I could never have done any lesson plans while I was undergoing chemo. In fact, I never cracked one book or listened to any music. I got nothing done on the book I was writing. I simply could not think. I couldn't concentrate. There's no other way to state that. I just couldn't think. I ended up spending a lot of time just sitting there and staring into space. I didn't even daydream. Just sat there. And no, I couldn't watch TV, either.
I couldn't sleep, either, or dream, so I spend a lot of time just sitting there, letting precious time slip through my fingers. It's no wonder people on chemo get depressed so easily.
When the chemo ended and the drugs finally exited my body, the fog eventually lifted, but I still experience short-term memory loss and I often have trouble coming up with the right word, which makes for some uncomfortable silences not only for me, but for my poor listener, who can't always figure out what I'm trying to say. My students, bless them, often tried to finish my sentences for me.
So far I have only talked about the side effects from the infusion treatments. I was also given a medication called Tamoxifen to be taken orally. The plan was to take this drug for five years. A year and a half into that treatment, I ended up in the E.R. with a huge blood clot that went from just below my knee about halfway down my calf. I was the one who informed my oncologist of this fact, and I'm glad I didn't wait for someone else to think of doing that. He took me off Tamoxifen immediately and put me on Arimidex. We'd talked about this earlier, and before going on the oral drug I'd had an extensive bone scan, which determined that I had a condition known as osteopenia, a precursor to full osteoporosis. A side-effect of Arimidex is loss of bone density, so we had decided on Tamoxifen. Unfortunately, the main side-effect of Tamoxifen is blood clots.
I had been on Arimidex for about six months when I had my next regular check up with the oncologist. His first question to me as soon as the we sat down to talk was, "When did the pain start?" I was floored. He knew there would be pain, and he'd said nothing before hand.
I'd started the Arimidex in the middle of summer. When school started in the fall I'd had to move some furniture round in my classroom - a normal thing because the custodians take all the classroom furniture and pile it up in the hallway while they are shampooing the carpet. When they move the furniture back, it is generally just dumped into the middle of the room. I'd always been strong enough to drag the bookshelves and my desk into position by myself, then unpack boxes of heavy books and put them on the shelves. That had proved to be very hard on my body. I knew I'd have some pain - I always did at the beginning of the school year when putting my room in order. But generally by the first day of school, my body was back to normal and the pain was gone. This time, the pain went on and on, and I found myself unable to get to sleep at night. I started to use the overhead projector rather than writing on the board, because I could no longer lift my arm high enough to write at eye level. I began to use a wheeled cart to carry just about everything. I stopped taking the stairs because it just hurt too much. It hurt as much to go down the stairs as it did to go up. By the end of each day, I was limping badly. The bones were becoming too weak to hold up the muscles, which began to ache from too much exertion. It was a vicious cycle.
The oncologist said he could fix this. He offered to write a prescription for something called Fosamax, which was supposed to make my bones stronger. It sounded good, but if you've been following everything I've written so far, you should be able to understand why I was concerned about possible side-effects of yet another drug. I told him I'd think about it.
I went home and did some research on the web. The most serious side-effect of Fosamax was listed as osteonecrosis, or dead jaw syndrome, which was only a problem if a user had invasive dental work done. I asked my dentist what would happen if I was on Fosamax and had to have a root canal. Her answer was that she would ask me to go off Fosamax for at least three months, maybe six, and then she would do the root canal. I don't know about you, but when I have to have a root canal done, it is generally because I have an inflamed nerve that hurts a lot. And yet the dentist was telling me that I would have to wait three to six months to have a root canal, if that became necessary!
A few months later, I read an article on ABC News Online that reported incidences of bones breaking spontaneously. And they were talking about the femur (thigh bone), the largest bone in the body! All the patients mentioned in the article were women, and all of them had suffered breast cancer! They didn't seem to put two and two together in this article, but I did. All of them were probably taking Arimidex to prevent any more cancer cells from forming, and all of their oncologists had "fixed" the problem by prescribing Fosamax, probably because of the pain. If I took Fosamax to "fix" the side effects from the Arimidex, I would be under threat of having a bone break spontaneously. Not only did I decide not to take the Fosamax, I quit taking the Arimidex, as well..
I began to see a chiropractor and physical therapist who were working in the same office. My oncologist refused to recommend chiropractic because he didn't "believe in it," so insurance did not pay very much toward the treatment. That office, knowing my financial situation, ended up taking me on as a charity case - probably for a tax incentive, but who cares? My oncologist might not believe in the power of chiropractic, but I do. The chiropractor took a full-body x-ray before they started treatment and I was shocked to see that a frontal view of my spine showed an S-curve, with my neck held at a slight angle. No wonder it was painful to move my head enough to make lane changes safely while driving. I'd been depending on my side-view mirrors and prayer for a long time. Eight or nine months later, they took another x-ray and my spine was straight as a string. The visual difference was breathtaking, and I could feel the difference the treatments were making. The pain faded, and I began to gain back my energy.
But the drugs weren't finished with me yet.
Just before I moved to South Dakota, I suffered two large pulmonary embolisms (blood clots that had traveled to my lungs and stuck there, obstructing the flow of oxygen to my blood). The drop in energy was immediate and frightening, and once again I was obliged to spend months recovering my energy. That was when I was belatedly put on blood thinning medication, and I am still in the process of having my blood monitored every month.
So the cancer is long gone, and - knock on wood - it will not be back. The side-effects and their ramifications are here to stay. But I refuse to let them win. :-/