…so, don’t say I didn’t warn you. I’m going to try to write about fatigue while I’m fatigued, which may be a little like, well……I’m too tired to think of a pithy metaphor.
Just so you know, I did not have chemo. Having chemo has practically become synonymous with being treated for cancer. When your cancer treatment first comes up in a conversation — oh, you know, you’re, like, standing in line at the grocery store waiting to get checked out, and there on the front page of People Magazine is a story about Patrick Swayze’s brave battle with pancreatic cancer. And the person behind you in line catches you looking at it while she’s looking at it. And you exchange a sympathetic look, and she says her uncle died of pancreatic cancer, and, well, you know how it goes. Sooner or later, this person is bound to make a remark about chemo, because it’s almost impossible to talk about cancer without bringing it up.
There are usually two underlying aspects to a non-survivor’s initial remarks about chemo. One is the assumption that all cancer patients are treated with chemo. In fact, you’re not a real cancer patient unless you’ve had chemo and lost your hair. If you don’t believe me, just drive Interstate 95 North in Rhode Island sometime. I have driven this route dozens of times in the past year or so as I was getting diagnosed and treated for breast cancer. Along about Cranston is a billboard for one of the cancer treatment centers that I, indeed, have gone to for cancer treatment. It depicts the ubiquitous bald women with drawn-on eyebrows and a defiant look on her face. There she is, the icon of cancer treatment, specifically and especially breast cancer treatment, serving as an advertisement for the comprehensive service you can get at one of the cancer centers in Providence. Oh, sure. That’s what we all aspire to, what we all would wish for our girl friends — bald defiance and defiant baldness. When you see her, you know you’re supposed to think, “Oh, look how brave she is, poor thing, showing off her unfortunate bald head, not to mention her horrible diagnosis, right out there in public!” All right, I’m getting snarky. But really, when you are a cancer survivor, and your friends are cancer survivors who have actually endured chemo and baldness and nausea and exhaustion and infection and other people’s stupidity, not to mention bone-chilling fear and surgery and radiation and having one’s self-image blown to smithereens, you get really grouchy when some freakin’ medical management corporation uses a bald woman on a freakin’ billboard to drum up business.
Is it any wonder that chemotherapy is seen by many non-survivors, including those who should know better, as something of a cancer rite of passage? Going bald apparently confers legitimacy upon you as a cancer survivor. So, if you’ve had cancer and been treated for it, but you didn’t lose your hair, your survivor-ship is suspect. No one would admit that, but believe me, I’ve had more conversations than I care to remember with people who clearly lost interest in what I said about cancer treatment after I said I had not had chemo. Which brings me to the second underlying aspect of nearly all remarks made by the uninformed about cancer and chemo. There is a smarmy undertone in many of these remarks that is the conversational equivalent of how people tend to rubber-neck as they drive by an accident on the highway. On the one hand, they’re fearful of confronting something gruesome, but on the other hand, they’re rather hoping they do. So, when people hear that I didn’t have chemo, they often do some pretty fast dissembling to hide their disappointment, and consequently stop listening to anything else I have to say.
Now, if that’s not enough indignity for you, there’s “chemo brain.” Believe me when I tell you that the cognitive slush that describes your thinking power after cancer treatment does not occur only after chemotherapy. In fact, the new medical term for “chemo brain” is “cancer-therapy associated cognitive change,” a term which acknowledges the fact that many if not most cancer patients develop slush brain after treatment. Susan M. Chang, M.D., who is the Director of Neuro-Oncology at the University of California, San Francisco School of Medicine, had this to say in the May/June 2008 issue of Neurology Now:
Chemo brain was first reported in the 1980s and referred to the cognitive impairment following chemotherapy experienced by some breast-cancer patients. These women described symptoms of confusion, mental fogginess, and forgetfulness. They also said they had a decreased attention span and trouble concentrating after chemotherapy.
This problem is real but may need a new name to better reflect the issues people face when they undergo cancer treatment. Now experts are recommending that the condition be called cancer and cancer therapy-associated cognitive change because there are several factors that can contribute to it. It’s possible that chemotherapy affects how your brain functions, but people receiving cancer treatment who don’t undergo chemotherapy can also experience chemo brain symptoms. One possibility is that the hormonal changes that occur with hormonal cancer therapy can cause these symptoms. Another probable culprit is that the fatigue from the treatments can make you less able to concentrate or multitask. Feeling depressed about your cancer can also affect your ability to focus.
As early as three years ago, scientists were able to see these cognitive changes on PET scans. Cancer patients who reported cognitive impairment after treatment had brain scans while they tried to perform memorization tasks which showed that their brains had to work harder to accomplish those tasks. But I’ve personally noticed that much of the discussion of “chemo brain” by so-called experts could have been lifted from the write-ups I’ve unearthed recently about Cancer-Related Fatigue (see my previous post, “The F Word”). So, what I’m hoping is that perhaps all these doctors and scientists and nutritionists and cancer pundits could get together and just fix this bleeping problem.
This is not what I had planned to write in this blog post, by the way. What I really wanted to do was describe what it’s like to suffer with this miserable condition, whatever the hell it’s called, during an average day or week. And what better day or week to describe than this one, when yesterday, I partook of my first official session in a research study about CRF. So, following is my week in review.
My work week is Sunday and Monday, seeing patients all day, off Tuesday, then back to work all day Wednesday and Thursday, off again on Friday and Saturday. I have been working full time, or about 9.5 hours a day, up until two weeks ago, when I returned to work after two weeks’ vacation. Just before returning to work, I got a note from my doctor to allow me to chop the equivalent of a day off my work week, so that I only have to work 30 hours/week for a while, or four 7.5-hour days. It’s still been excruciating, and this past week was no exception.
I went to work as usual last Sunday and Monday. Monday night I collapsed, as usual. I got home around 5 o’clock Monday night, fed the animals, let the dog out, let him in again, and I think I fed myself, but I’m not sure. I was too tired to finish documenting my patient visits. I get to the point that I cannot sustain a vertical position any longer — in marathon running, this is known as “hitting the wall” — and I MUST lie down. So, by about 5:30 or so, I hit the wall and went to bed. I read for a little while and fell asleep. The next morning, my Tuesday off, I woke up at 7:30, after sleeping for about twelve hours, give or take. I went to Providence to the studio of the local public radio station, to be recorded reading the essay that I just got accepted for broadcast on WRNI’s “This I Believe” program. I did that at 9, finished at 10, went home, don’t remember what I did except that I believe some of it involved lying down, got up at 12, drove back up to Providence, saw my medical oncologist, told her I had stopped taking tamoxifen and refused to take it again, went home, went on Facebook for a while, hit the wall around 5, and went to bed, sleeping for about 12 hours altogether.
Wednesday, I went back to work, attended a meeting at 8:30, finished my patient documentation from Monday, saw patients, went to another meeting at 3, went home at 4:30, took a 2 hour nap, got up and ate, fed the animals, let the dog out, found something to wear to work the next day, and went to bed at around 9, sleeping for about twelve hours or so. On Thursday, I saw patients all day, caught up on insurance documentation crap at work, went home, tried to get on Facebook for a while, set my alarm for 6:30 a.m. and went to bed at around 7. I had one of those nights where I kept sleeping and waking and sleeping and waking, but all together, I probably got about 9 hours’ sleep.
Friday, I got up at 6:30, got in the car, drove to the University of Connecticut Health Care Center, got there at 9, sat in a recliner to get blood drawn and have my first IV infusion for their research study on CRF. I had lunch and left at about 12, got home about 2, hit the wall, and went to bed at 2:30. I woke up at 4:30 p.m., fed the pets, let the dog out and in, ate something, went to bed again. Woke up at 9:30 p.m., hauled my butt down the street to get some milk, drove home, drank some milk, went to bed again at 10, didn’t wake up till 8 this morning, for a grand total of about 16 hours of sleep, allowing for an hour here and there when I was awake but inert.
That’s typically what happens on my Fridays, after my work week is over. I might last for the morning, but I might not. Basically, I have to sleep off and on all day and all night. Saturday, if I’m lucky, I might get something constructive accomplished, like taking the trash to the dump or washing a few dishes. Today, on this particular Saturday, I had to go pick up a friend’s cat. My friend is very ill and has been in and out of the hospital several times in the last month or so. She has a progressive disease that won’t be getting better and doesn’t feel like she can take care of her cat Teddy anymore. Months ago, she asked me if I would take Teddy if she needed a new home for him and I agreed. Today was the day that Teddy needed a new home. So, I did that at 10, came home, got Teddy settled in the guest room, made myself go back out for groceries, came home and ate some of them, and sat in front of the computer wondering if I could get the fog in my brain to clear enough to write this. If I didn’t have a calendar in my cell phone, I would not have been able to tell you what I did this past week because I wouldn’t have remembered.
This is what my life has been like since I returned to work a year ago after finishing radiation. If my paycheck didn’t get directly deposited in my bank account, and if most of my bills weren’t on automatic online payment from that account, I’d probably have defaulted on my mortgage months ago and had my utilities shut off. I wish I could afford to work maybe half time, but I don’t think I’d have enough to pay my bills and I wouldn’t get my health insurance covered. I’m grateful to have a job at all these days, but I feel like all I do is work and sleep. Every day, every week, every month for the past year, I work and I sleep, work and sleep, and occasionally, with enough coffee, I manage to have some fun now and then, do some writing, and keep up with my friends so I don’t lose my mind. And that’s about it. The inside of my house looks like lunatic spies went through it looking for a secret microchip, but at least I have a solid roof over my head, and my precious, wonderful friends, and warm, happy critters to come home to. I’d just really like to get the rest of my life back one of these days.
The U-Conn study is looking at thyrotropin-releasing hormone as a treatment for cancer patients with Cancer Related Fatigue. It’s an interesting study and I’d love to tell you about it in much more detail, but I’m too tired right now. I told a girlfriend that I’d meet her down the street later to go see a play being put on by a bunch of college students we know who have formed a theatre company. So, I have to go lie down for a little while.
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