6 - Side Effects of Chemo

When to Tell Whom

This is probably stupid, but I don't want to tell people until the problem is past, until I know the resolution. Only when we're well into the treatment cycle do I have the confidence to inform most people. I will eventually write a note to everyone saying that I'll be out completely for a couple months. However, to this point, I've missed less than two weeks of work, so it's not obvious that anything serious is going on. No one but my wife knows anything for weeks and weeks. I don't even tell my brother until just before the first surgery. And then we have guests coming in from out of town for a long weekend at a point when I'm really in bad shape, so I have to tell them why we won't be partying. And I finally tell the rest of the family when I'm about halfway through the treatments. I'm not sure why I am so reluctant to tell people about my problem, but I am. I think I missed out on a lot of support that friends and family could have provided. I don't recommend my strategy for anyone else.

Before I forget, I also have to give an A+ to my boss, my company, the HR department, and their health insurance manager. The bureaucratic and paperwork aspects of the whole disease and treatment were as painless as possible. This is a wonderful thing.

Side Effects of Chemo

The mitomycin makes me green at the gills for two or three days. Mild anti-nausea drugs take care of the problem for that first week. The 5FU is a different story entirely. One of the possible side effects is mouth sores, ulcers actually, stomatitis, and I got it. The drug finished pumping in Friday afternoon. Saturday my mouth was a little sensitive. Saturday night, we went out to dinner and I couldn't eat the wasabi mashed potatoes, which normally I would love. On Monday there are white sores on my tongue. By Tuesday afternoon the pain is terrible.

I can't eat anything solid, and I can't even drink much, not even though a straw. Whatever does go down has to be cold or tepid. Warm feels soothing at first but burns later. Ms. T becomes an expert at pureed drinks and soups. Everything has to go through a straw and be swallowable in the center of the mouth without touching the cheeks or tongue. Take some chicken soup and puree a chicken breast into it. Broccoli soup and broccoli. Soup with salmon puree. Cold smoothies. Milkshakes on the way home from radiation treatments in the morning. It's not enough. In that first week, I lose twelve pounds from Monday to Friday and become seriously dehydrated. The radiation doctor advises me to get more fluids. Back to the chemo room for a liter of saline. Boy, that port-a-cath is really useful. No searching for a dehydrated vein to insert the IV into, just one little punch in the shoulder and it's in.

There are drugs, too, two special mouth rinses and a fungicide to suppress possible yeast infections in the mouth. They soothe a little but not enough. I need large doses of morphine (liquid, oral) to get through the day. I stay on the morphine for a week until the pain is down to a tolerable level, but it still doesn't go away completely for three or four more days.

One unexpected benefit is that I continue losing weight simply because I'm not awake for much of the time. And I can't eat real meals. I have a couple snacks during the day, but that's about it. Aside: Over the course of the treatment, I lose thirty pounds, and I keep it off. I don't recommend it as a diet regimen, however.

Something else strange that first week: hiccups. I never, ever get hiccups. Okay, maybe once every five years or so, I will hiccup for two minutes. On the second day of chemo, it happens a half hour after lunch and lasted for five minutes or more. The next day, it expands to dinner, too, and it lasts for a week.

And then there's the hair loss. I lose two-thirds of my hair over the first three weeks; my moustache, too. I take pictures of my hairbrush filled with hair. Eventually it all grows back, but a slightly different shape with waves where it used to be straight. As they say,
chemo's job is to kill you, specifically to kill the fast-growing cells, which includes the cancer but also includes a lot of the rest of the body.

5 - Chemo Week 1

Chemo Week 1

The treatments begin with chemo as well as radiation for the first week. Understand that chemotherapy drugs are, well, poisons. They are supposed to kill you, partway, or more precisely kill part of you. The idea is to kill that *part* of you that happens to contain *all* the cancer. The smaller the target, the less "collateral damage," the better, of course, but something still dies. Since cancer cells reproduce faster than normal cells, they are more impacted than regular cells by drugs that interfere with their reproduction. Other fast-growing cells are similarly affected, for example, hair, the mouth, most of the alimentary canal. One feels like crap while this is going on, "half dead," though half is an awful exaggeration. As I said before, I was lucky: I had the lightest, least debilitating treatment ever.

The chemo doctor's office has a sign on the door: No children. There are immuno-compromised patients in here. These patients with their chemically-suppressed immune systems cannot tolerate even simple diseases in this condition. Any infection that is normally simple could become serious. I am very unhappy to consider that this includes me.

The environment for this treatment is very comfortable. At the back of the doctor's office is the chemo room, a very large room lined with chairs and IV trees, thirty identical comfy leather recliner chairs and eight-foot steel stands on wheels with steel branches on top to hang IV bags from. I can only imagine the delight of a furniture salesman when a customer walks in and says, "I like that big, expensive, plush, leather recliner over there. I'll take thirty of them." He would never suspect.

This room is the corner of the building with two walls of bright windows, but the blinds are always partly closed. The clientele aren't usually interested in bright, sunny, cheery surroundings. Instead, there are tubs of blankets, quilts, and pillows all over, to keep one warm while cool poisons flow directly into one's veins. I see people cocooned into the chairs, listless, some napping, a few reading, some with iPods. Many of them are wearing hats or scarves on their heads, or obviously syntho wigs, to cover the hair loss that we all associate with chemotherapy. They look so much worse than I feel. I am so lucky.

At the beginning of the radiation treatment, there are two types of chemo. Both of these go in through the port-a-cath in my shoulder. The first drug is mitomycin C, a small plastic baggie of nasty purple stuff that drips in over an hour or two on the first day. The second one is 5FU, 5-fluorouracil, which is pumped in over four days, Monday through Friday. The 5FU treatment happens twice, once in week 1 and again in week 8.

The pump is in a fanny pack, fairly bulky and obvious. I go to work one day with it, but since I don't want people at work to see it I decide to work at home for the rest of the week. I haven't yet told anyone at work except the boss, and I think the fanny pack would make it pretty obvious that I had drugs being pumped in.

The tubing from the pump to my shoulder is subject to occasional pulling, for instance when I place the pump on the floor outside the shower. The entry point of the needle is covered with a large waterproof bandage, but I'm afraid that an inadvertent jerk on the tubing will pull out the needle. So I fashion a strain relief for the tubing, a down-up-down serpentine path for the tubing, with chevrons of adhesive tape attaching the tubing to the chest in two places. Works cool. Might not be necessary, but I feel much more secure with it in place. Also, the sterile strip over the needle entry, being in place for a week, causes a bad rash that takes weeks to heal. The rash and the slow healing are probably both related to the immunosuppressive effect of the drugs.

4 - Planning for Treatment

Planning for Treatment

So we go back to the chemo guy. He and the radiation guy have conferred. The regimen shall be six or seven weeks of radiation with chemo in the first and last weeks. That's it, that's the standard treatment for these things that "cures" the cancer almost all the time. Set to start a few weeks hence when the surgery has healed sufficiently.

Aside: doctors have an uncharacteristically practical definition of the word "cure." To be cured of something means, they say, "Whatever kills you, won't be this." It's a ritual. Two of them used the same words. It's a jarring idea, but, well, comforting when you think about it, if the percentage that they name is high.

The radiation sequence starts with a "simulation," which is an exercise to locate the radiation fields precisely within the body. They start with several dots tattooed onto the skin, left, right, and top, to be used later to position the body precisely on a table. Small lasers draw red lines up, down, and across, and the techs align the reference dots with the grid. Then they take X-rays from the top and sides, and the doctor draws on the films. "We want to illuminate *this* area but miss *that* organ" drawings. These are used to fashion large lead guides that shape the radiations beams during treatments. (Pictures attached.)

Surgery 2

The week before the chemo, it's back to the surgeon to get a port-a-cath. This is an injection port, a subcutaneous device through which drugs can be injected intravenously repeatedly without puncturing a vein every time. It's a small cylinder, mainly plastic or titanium, about an inch in diameter and an inch high, with a rubber top. It is placed under the skin in the shoulder, and a tube from it runs into a downstream vein, in this case the subclavian vein. Subclavian = under the clavicle, the collar bone. The top of the cylinder is a rubber membrane just under the skin. Push a special needle through the skin and the membrane, which is a lot easier than going into a vein, and squirt into the barrel of the cylinder. Anything injected into the port gets sucked into the vein.

This port is where the chemo goes in, several times. It can also be used to draw blood, too, theoretically. There is a one-way valve that normally prevents backflow into the port, but if one applies enough pressure (suction), it is possible to draw blood backwards through the port. However, this one seems to baffle all the nurses who try. They try to use this for the weekly blood work all through the treatment but never succeed.

Aside: the surgery to insert the port-a-cath is more, um, interesting than usual. As I awaken from the anesthesia, the doctor comes in, breathless, and says that he has to go back in because he forgot a little clip. Ten minutes later I am unconscious again and being sliced into again. I know this wasn't a hallucination because (1) they gave me two serial number identifier cards for the BardPort (brand name) in my chest, so parts were used from two separate units, and (2) the nurses remembered the incident when I went back to have the port removed months later. They thought it was funny. "I've never seen Dr. (name expurgated) move so fast."

Aside aside: This is mistake number two for this particular doctor.

Before the chemo and radiation treatments start, there is a CAT scan to establish a baseline. Torso, thigh to shoulder, takes only a few minutes, no sweat. Be sure to get a CD containing all the pictures. They will happily give you one if you request it in advance. Depending on the machine, you may need to adjust the contrast or gamma of the pictures, but any reasonable photo viewing application can help you with that. (Get the best zero-cost application from www.irfanview.com.) Some CDs now come with specialized applications for viewing the pictures, much better.

3 - Surgery 1

Surgery 1

The surgery is not fun. The area where one would normally sit has been assaulted with sharp objects, needles, sutures, probably cauterizing. Sitting is impossible. Lying down is hard enough. Recovery takes a solid week. Fortunately, there are lots and lots of good drugs to help one through the pain. I can't do anything through the drugs except lie there, slack jawed and drooling, staring at the TV. Or the wall. Two friends supply me with a large number of DVDs to help pass the time. I watch many movies that I cannot remember now. As I said, good drugs.

Back to the surgeon for follow-up. Well, everything looks pretty good, he says. Huh? Wait a minute, wait a minute. That's not the way we read it. The pathology report in my hand says that the underlying muscles and the lymphovascular system are involved. This means lots more treatment. The doctor is skeptical. The path report in his hand doesn't say this. Puzzlement. Turns out that his records contain only the preliminary pathology report, which says good things. The final report, which luckily we got a copy of from the hospital, says bad things. (Lesson: get a copy of absolutely every piece of paper you can, from every doctor, every lab, every hospital, and study them all.)

Lucky, lucky, lucky. Had we proceeded based on the incorrect preliminary path report, the cancer would still have been there and still growing. And I would be dead in two years.

The lymphovascular system, oops, is the highway system that drains extracellular fluids from tissues. This provides a path that permits cells to move, too. In particular, it allows such nasties as cancerous cells to get away to other parts of the body, to metastasize, which one does not want. So now I have to go thru the whole treatment, chemo and radiation. Oh, goodie.

The official classification is T2-N0-M0: muscle layer involved, no lymph nodes visibly involved, no metastases visible.

Where Was it Hiding?

The obvious question is, If we had found it just a few months earlier, would the surgery have been effective? Would the surgery have got all the cancer? Would the excision have had the "clean margins" that I'm told I should want? This was a case of early detection, to be sure, but still earlier would have been better. At some point in the past, it must have been small and well-defined and easy to remove. But, being so small, would it have been possible to detect? These things start as one rogue cell. Then they get out of hand. When did it cross the line from undetectable to detectable? When did it change from operable to inoperable? From well-defined to diffuse? The surgery got most of it but not all. Almost all, but not all. What's left is microscopic, but is microscopically bad. Little lethal seeds floating down lymphatic rivers, looking for fertile new homes. We can't let that happen. And if it's not feasible to pick them off one by one, it's time to get out the nuclear weapons.

2 - Diagnosis

WARNING: The following narrative contains much material that is not suitable for younger viewers. Nor the generally squeamish. Nor even most adults, who, if they are like me, prefer to live in denial and avoid unpleasant subjects.


Here's the long version. This is a tale of cancer diagnosis, treatment, and survival. Anal cancer, a relative of colorectal, which is a major killer of males in this country, due largely I think to late diagnosis. The story has that as its moral, just so you don't have to wonder until the end: early detection saves lives.

Let me state right up front that I was lucky. I was damned lucky. I got off easy, I think.
Relatively speaking, I had the simplest, lightest, least invasive, least debilitating cancer treatment ever. I am thankful that it was easy. No, I am thrilled that it was easy. I wish that everyone who has the misfortune to cross cancer's path could have it as easy as I did, or even easier. I am trying not to whine here, but to inform. This is what happened to me. This is what I should have expected had I been well-informed. And will expect the next time. (Quick! Find me some wood to knock on!) Maybe being informed -- forewarned -- is a good thing.

Symptoms

Last fall, I had some symptoms, bleeding. Irregular, slight. There for a day, gone for a week. I set up a colonoscopy in January; he didn't find anything but internal hemorrhoids, no big deal. Whether the tumor was not there at the time, or was too small to see, or whether the guy missed it, we'll never know. Six months later the symptoms are back. Off to the gastroenterologist, Ms T's doctor this time, not the guy I went to earlier. He looks at the bloody glove after the examination, says, That's not right. We have to do a real examination, a flexible sigmoidoscopy. I waited, in retrospect foolishly, a couple weeks.

Examination

This sigmoidoscopy itself is easy, one of those procedures where you get really good drugs to go bye-bye and you can't remember anything afterwards. One minute you're on the table, the nurse is sticking a needle into the IV saying that this will make you very sleepy. The next minute it's late that night or tomorrow morning. Whoa. You're not unconscious all that time, just brain on autopilot with no conscious memory afterward.

Bad News

The examination was on Friday. He might have mentioned on Friday that he had biopsied something, but through the drugs I don't remember. Tuesday I get a message on my voicemail at work. From the doctor, not from the nurse. That's unusual in itself, enough to get my attention. "You must come to see me today, without fail." Yikes. That scares me half to death. So I call Ms T and we go to see the doctor that hour.

He looks grave. Yes, it's cancer. He shows me a picture taken by retroflexing the sigmoidoscope. Looks irregular. He had biopsied it, and the report is not good. Squamous cell carcinoma. Oh, sh*t. But, he says, it looks to be very early. The treatment will be minor, not major, not that bad. See a surgeon. No, not disfiguring surgery, not that bad. Maybe we can get the whole thing with surgery and skip the radiation and chemo, not that bad.

He gives me referrals to surgeon, chemo, and radiation oncologists. I spend the rest of the day arranging appointments. Actually get in to see the surgeon the last thing that same day. He thinks we can probably remove the whole thing. Small and early. How's the day after tomorrow?

In the meantime we see a chemo doctor, who is called the "medical oncologist," a nice young guy. And he refers us to a radiation guy, right across the street. Turns out to be a wonderfully convenient location, full-service treatment center within a hundred yards.

All the doctors have the same vocabulary: malignant, lethal, fatal, deadly. Malignant, lethal, fatal, deadly. Malignant, lethal, fatal, deadly. It's horrifying, numbing. I think it's done to get my attention, to make sure I take this seriously and immediately. I can imagine that a lot of patients go into instant denial when given such a diagnosis. This is the type of cancer that kills a lot of men, because they ignore it, because they let it go too long before taking it seriously, because they fail to go into treatment immediately, because they're too embarrassed to deal with it. These doctors schedule procedures as quickly as possible, I guess not to give me time to reflect. First exam; sigmoidoscopy two days later. Surgery a week later. A week after the new pathology report, schedule the chemo and radiation, boom just like that.

We see so many new doctors, fill out so many histories, that we eventually write a list of answers to the standard history questions: all the drugs I take, names and dosages; all the diseases I've ever had; what my parents died from, etc. It helps us not forget anything.

1 - Six Months Later It Seems Like a Bad Dream

Introduction

For my sixtieth birthday, I got cancer. This is a journal of my trip through the treatments and the effects of the treatments. It's just a journal, a diary, and some observations along the way. It is not a tale of heroic struggle or community or spiritual growth. I just plodded through the sickness because there was nothing else to do. You can't just lie back and let it run you over. You do whatever it takes to get through it and keep on living.

I took notes at the time, while all this was going on. I turned the notes into prose a few months after it was over, when I had recovered some strength and gained some distance. It is years later now and I can view this all with detachment. I have survived four years -- so far -- past the diagnosis. Still doing follow-up CAT scans and blood work and examinations, of course, but less frequently. It's time I let go of the secrecy that I clasped around that part of my life. Maybe a record of the experience of one lucky person can help someone else understand the process and make better decisions than I did. May you be luckier and better informed than I.



Six Months Later, It Seems Like a Bad Dream

I lost a hundred days. My memories are broken and stirred in a way that's hard to comprehend from today's perspective. There are a few small, shiny pieces, images reflective and clear, colored like today, like a few shards of broken mirror balls in an otherwise gray soup. They used to cast coherent pictures, distorted out to the sides but clear. Disconnected now. If I hadn't kept some journal at the time, if I hadn't insisted that my sweetie take notes of all the meetings with doctors, I wouldn't be able to put anything in sequence.

Here's the short version. Last August, I got a really, really bad report card from my doctor. One day I have an examination that the doctor says "doesn't feel right." He says that it doesn't feel normal, or good. He says that we ought to do a thorough examination. So we do it on a Friday a couple weeks later. Then Tuesday, at work, I get a phone message. It's the doctor. Not the nurse, the doctor. That alone is out of place. "You must come and see me, today, without fail." Scares the bejeezus out of me. I call Ms T for support. Over to the doctor's office we go.

Yes, it's cancer. This type, this place, this spread, this treatment.

Doctors seem to have a ritual for such situations. The first conversation with the patient must contain the words "malignant," "lethal," "fatal," and "deadly." The first four doctors I talk to all use the same mantra. Malignant, lethal, fatal, deadly. I think that they do it to get the patient's attention. Slap 'em with the wet fish, so that the patient can't slip into denial, which is the only thing a sane person could do under the circumstances. But after the first onslaught of those words, I can't concentrate to hear anything. Good thing Ms T is taking notes. She does this a lot over the next four months.

The treatment, from four doctors, includes surgery (a little), chemo (a little), radiation (a lot), and time. Takes almost four months overall. Follow-up visits, CAT scans, and examinations will continue for another, oh, two years. The prognosis at the end of this first phase is "Clear."