Friday, July 3, 2009

13 - Begin at the Beginning

This really is one long narrative. It will make much more sense if you read it in order. Please start with number 1, over in the Archive menu.

12 - The End, I Hope


Overall, this was the lightest case of cancer and lightest case of shingles I have ever heard of. I dodged two huge bullets. Not because I was smart or a good person or anything like that. Just luck.

Every time I walk into the chemo room, I look around at all the other people there who are so much worse off than I am. Thin, wan, wasted, bald, weak and shivering under blankets for hours at a time, being injected with poisons. My God, I was so lucky. Yes, it was a bad thing, a really bad thing, but the least bad bad thing possible. Well, ignoring the non-metastasizing basal cell carcinoma skin cancer I had a few years ago, which almost doesn't count as cancer because it won't spread inside and kill you like all the others. Sure I was out of order for about four months. That doesn't even compare with being on disabling chemo for endless months with the chemicals killing you little by little for a year, two years. There but for the grace of God….

There but for the grace of a couple months, too. Incredibly, I paid attention to relatively minor symptoms. Twice. If I hadn't, and if my sweetie had not kept on my case to do something about it, to see a doctor, I would be in this group. Dead minus two years. A lesson for all others, particularly macho men who don't want to think about problems in sensitive areas, don't want to go through examinations, don't want to go through the procedures, don't want to risk the side effects, just don't want to think about it.

By February, I'm feeling fine, back to baseline. I'm working, I'm exercising, I'm sleeping, I'm functional.

A year after the diagnosis, the CAT scan still looks good. The collective opinion of the doctors involved is that, if it doesn't recur in two years, then it never will. ("Whatever kills you, won't be this.") How can you know if you got every one of those little buggers? All it takes to start again is a few cells who survive the chemicals and the rays and what's left of the immune system.

I want to finish with another important thought. That vow, the one about "in sickness and in health," is more important than I could ever have imagined when I was young, or when I spoke it and heard it in the chapel one day long ago. That level of commitment really defines a life together. I can't express what it means to me. I can't imagine what I would have done if I were alone, or abandoned, during this ordeal. Sure, I helped her through knee surgery and shoulder surgery, big deal. Minor. A life-threatening illness that goes on and on for months is another order of problem. I hope we are never again tested with such a burden.

May you all be luckier than I.

Copyright © 2006, 2007 by Richard Landau. All rights reserved.

11 - Christmas Present


My Christmas present from the disease is a case of shingles. Apparently this happens when one is immuno-suppressed. Shingles is that childhood case of chicken pox come back to haunt you. The chicken pox is caused by a virus called Herpes Zoster, a relative of other herpes. The virus doesn't die or go away when you get over it. It gets into the nervous system and just lies there for a few decades. Then, when your immunity is down, when viral opportunity knocks, it infects, that is reinfects, one nerve coming out of the spine. Just one nerve, so it affects one limited area of the skin on one side of the body.

The pictures one sees on the web are scary. Big, angry red rashes all over some part of the body. I have it in the sciatic nerve, which is the lower left quadrant, a huge area, so it could be really bad. But luckily it isn't bad. I get just a few spots of rash, nothing like the complete coverage in the web pix. When it's over, there are only a few scars, and thankfully almost no post-herpetic (after herpes) pain, just numbness and some tingling. For many people, the pain lasts for months or years and can be terrible, requiring long-term pain meds. I do have a little "restless leg" for several weeks, but that goes away, too.

The odd part is that, on the plane just before Christmas, my left leg is killing me. I have to get up several times during the trip and pace around and stretch the muscles to avoid bad cramps. Of the four hour flight, I probably spend an hour standing up and stretching and walking. Drives the stewards nuts. Two days later when the rash appears, it becomes clear that there is something wrong with that leg. Then I find out that this is a nerve disease. Well, had I known, I would have known. But still overall, a very mild case. Lucky, lucky, again, again.

Another CAT scan

Six weeks after the end of the radiation, I have another CAT scan. This one looks, thankfully, normal except for some weirdness in some tissues caused by the radiation itself.

Another surgery to remove the port-a-cath. A week and a half recovery, a nice neat scar. However it still hurts every day, now two months later. For instance, if I sleep on that side, it hurts a lot when I turn over. Now and then a stitch sticks its nose out, so I keep antibiotic ointment on it most days. Six months later, the scar is still sensitive: itchy, slightly painful to the touch. A year later, still twinges now and then. Does that ever go away?

10 - After the Radiation

Week 9

The doctors warn me that the worst happens after the radiation stops. Who would guess. The radiation is nothing one dose at a time. But the cumulative effect of all the dosages together is huge. My total dosage is not all that large compared with some more resistant tumors in the head, neck, lungs. But large enough to be debilitating.

Week 10

I told almost no one until it was nearly over. Not even my brother. I didn't tell him until week six or so. We didn't tell our best friends here until after the first week of chemo and radiation. Another friend from out of town was coming in for an annual event, the Texas Book Fair that happens in Austin every November 1st, give or take. I kept putting him off about whether I would be able to participate in the activities, which I have always done enthusiastically. So I had to tell him. Even the rest of the family was kept out of the picture until it was 90% over. My wife had to tell her mother and siblings because it interfered with her plans to visit her aging mother, who is recovering from breast cancer. It was probably a mistake to keep family and friends in the dark, but that's in the past.

Through all this, I have to say, the company that I work for was great. No pressure, help with very understanding insurance, setting up medical leave. And incredibly luckily, it was a slack period at work when my absence for several months was not an actual disaster for my job. Come late December, January, I can pick up after a long hiatus and yet be not awfully behind.

After the skin comes back more or less to normal, and after I get back some energy, I find that I am horribly atrophied and weak. Almost four months of total slothitude, lying in pain- and drug-induced catatonia for days at a time. I have to exercise regularly, gradually increasing. Start with a slow jaunt on the treadmill. Takes weeks to build up to a mile of hard marching; three months up to three miles, marching almost every day. And some specific muscle movements. And some work with free weights.

It is weeks before I can even open the laptop and move the mouse around to browse the web. My companion for the weeks of enervation is a TV with a remote. Thank God for midday Law & Order reruns. And a DVD player.

One friend generously inflicts two dozen DVDs on me. His taste in movies is a trifle grim, but they help to pass the time. When I say grim, I mean that, for instance, he supplies plot summaries and ratings for all the movies, and the ratings are in razor blades, not stars. Yes, the razor blades represent how suicidal watching the movie will make you feel.

For much of the time, it is all that I can do to hold the remote and push the buttons. BTW, we have to go out and get a new DVD player because our old cheap one won't play some of his disks. Specifically, it won't fast forward some of them. So we get a new, high tech one, on sale at Fry's for $100; no, actually, it's on weekly special for $60; no, actually, it's marked down further at the cash register to $50. How can I resist? Very high tech, plays everything, even plays at 140% with the sound faster but pitch-preserved. Some disks it can play at 200%. And a good remote, too. Fifty bucks, can't beat it.

9 - Radiation Weeks 6-8

Radiation week 6

The next few weeks flow by uneventfully. In week 6, we have to skip a two days of treatment, plus the following weekend, because the skin is so badly burned. This gives it five days to recover from the last dose before we mistreat it again.

In general, the skin is pretty raw at the beam entrances. To assuage the sunburn, one uses special soaking solutions called Domeboro Soaks. These are soothing, warm then cold, several times a day. When they dry, on goes the gunk, a cream the name of which I have forgotten, but there were several of them to try. Rubbing that in to badly burned skin is not so much fun.

Aside: If you mistreat skin enough, particularly burn it enough to get rid of the top layers several times, you can actually get rid of persistent skin infections like psoriasis that have resisted treatment for years. Nothing, apparently, can resist this level of mistreatment. It's effective, but I don't recommend the cure unless there's a compelling reason to suffer through it.

Radiation week 8

Finally, the end. Week 8. This is the week when I'm scheduled to have the last chemo to go with the radiation. Chemo 2 consists of only the 5FU, again pumped in over four days, Monday to Friday. Remarkably and thankfully, this time there are no mouth sores. The chemical oncologist says that the first treatment aroused my immune system, which is then able to resist the effects the second time around.

This is it. No more quotidian trips to the lead-lined cellar to be irradiated. I buy a small present for the nurses and techs that have been so solicitous during my forty visits, some new music for the CD player that they run constantly.

Aside: later on, I get the doctor a little present, too. Long ago I ran across a book called "American Ground Zero" about the above-ground A-bomb testing program in the forties and fifties in Nevada. What first got my attention was that St. George, Utah, was directly in the path of the fallout clouds in many cases. St. George is one of my favorite places, a nice little town near Zion National Park amid the beautiful red sandstones of southern Utah. The government at the time considered that area to be a "low-use segment of the population," whatever such officialese might mean. People were not told to avoid the dust. Teachers took kids outside the school buildings so that they could see the cloud coming over, so they could participate in the historic event, for instance. The book is testimony from survivors of the blasts, and from relatives of the non-survivors who died of various cancers over the years. Filled with memorable vignettes such as the schoolgirl who used to write in the (fallout) dust on top of the cars. "The dust burned my fingers," she recalls. People were told to be sure to brush the dust off their livestock, but not off their children. It seems to me a book that a radiation oncologist ought to have in his library.

8 - Side Effects of Radiation

Digression on the Side Effects of Radiation

What are the side effects of radiation? Well, there are some obvious ones. First, sunburn. The radiation has to go through the skin to get where it's going, and that beats up any tissues that get in the way. Skin is the layer of defense, hence the first victim. The discoloration I notice is mainly from the e-beam radiation. Two perfect little circles, still discolored a year later.

Second, other things in the path don't work. For instance, about midway through the radiation, I start having bad intestinal cramps, I guess due to the cumulative damage of the radiation in the area. A fiber additive such as Metamucil helps a lot. And of the things that don't work now, some of them come back and others don't. Some nerves in the area just aren't quite so lively as they used to be, even a year later.

Other things that may or may not be directly related happen, too. I also have bad tinnitus, which I've always had a little of, but something in the treatments turns up the volume control dramatically for a couple weeks. Tinnitus, for the young and/or fortunate who are not familiar with the phenomenon, is a ringing in the ear. We all have this now and then, a ringing that starts suddenly, goes on for a while, then fades, right? Suppose it doesn't fade. Suppose it stays forever. At a lower volume than the short-term events, sure, but forever. A constant whistling in the left ear. When it's soft, I can ignore it. When it's louder, it's a distraction much of the time.

The main side effect is that one feels like crap. I thought with weeks of time off and nothing to do I would make a dent in my unread books pile, which has got way out of hand in recent years. Ha. Doesn't work that way. Between the drugs and the enervation of the radiation and the chemo, I lost weeks. Weeks when I couldn't hold a book in my hand. Hell, weeks when I couldn't maintain consciousness for any length of time. Weeks when I could barely push the buttons on a remote control.

Aside: I need to invent a gooseneck device to hold a book for me in any position, overhead, by the side of the bed, under the edge of the bed, whatever. Something to hold a Bookmate in an arbitrary position but still let you turn pages. Hmmm. Good idea.

During those weeks I took some notes on the drugs I took and that's all I have now to show for all that time. I do have a nice Excel spreadsheet of the quantities of morphine and hydrocodone I consumed, how wonderful, but no memories.

Another aside: I was really worried about becoming addicted to the (wonderful) drugs for the various pains, so I kept careful track of every pill or drop taken, what dose at what time. There were a couple predictable peaks during the really bad times after surgery, after chemo, and after the radiation. But thankfully there was a steady decline at the end. Eventually I needed them only to sleep, and then down to just a couple Tylenol, and then nothing.

For the mouth sores from the chemo, the right stuff is liquid morphine sulfate. Yeow, a wonderful trip that! Just a drop or two in a little glass of soda and the pain becomes somebody else's pain. That pain? That's not my pain anymore. That must be somebody else's pain. I can just lie there and smile and breathe and let time wash over me for a couple hours until it's time for some more drops. It's easy to understand how people get addicted to this. They gave me two bottles of it, just little bottles but enough in each of them to kill a horse. Wow. Have to be careful measuring out doses with an eyedropper. Three drops for moderate pain. Four drops for bad pain. Five drops if I want to go to sleep right here, right now.

Yet another aside. the port-a-cath is intended for regular use. If, like me, one has chemo irregularly with weeks between doses, then one has to get the port-a-cath flushed now and then. Go in to the chemo room and get a liter of saline. Just a quick oil change. It keeps clots out of the output tube so that a liquid can flow freely when it ought to. I did this every three-four weeks.

7 - Radiation Week 1

Radiation Week 1

Radiation treatment seems simple. Go into the office every day, 9:15, for fifteen minutes. Lie down on the table. The techs line up the tattooed dots with the laser grid. This big machine moves around to focus on the guts from six different angles, 20-30 seconds per. Done. Can't feel a thing.

Well, it's a little more complicated than that if one pays attention to the details. First, the machine is a linear particle accelerator that can generate gamma radiation or direct electron beams. No more radium, cobalt, whatever. Syntho radiation for the modern age. The business end of the machine is half of a very large horizontal tuning fork that can rotate around the plastic table that one lies on. See attached pictures.

I get shot from six different angles: top, bottom, left, right (all gamma), and then left and right oblique angles (e-beam). For each of the shots, the techs fit a set of lead shields onto the exit face of the accelerator. The first four deep doses are gamma radiation, 18MeV. (That's eighteen million electron volts, which sounds like a lot, and it is.) For these doses, the lead forms are huge, six to eight inches long (in the direction of the beam), the same wide, and two-plus inches thick. The inside surfaces are carefully machined to shape the beam just so, to match the doctor's plan from the simulation. Remember the simulation? Every week they take a set of X-ray films, but using the accelerator instead of and X-ray source, to see that the fields being irradiated match the doctor's drawings. The plates come out very overexposed but the shapes are clear.

The last two doses are done with electron beams, also 18 MeV, rather than gamma (which they call "photon") radiation. Gamma rays, energetic little buggers, go right through, but e-beam doses are heavily attenuated by flesh, down to half strength at a depth of only two to three inches. These are used by design to shoot the shallow lymph nodes in the inguinal region, left and right. Just in case any cancer cells escaped into the lymphatic system, the doctor treats the lymph nodes.

Each of the doses follows a standard routine. The techs line up the dots with the laser-drawn grid. As a double-check, lights from the accelerator head are projected through the lead masks, and the techs check the alignment with the magic marker (Sharpie) lines they drew on the skin. When they are satisfied with the alignment, they leave the room and the computer closes the radiation door, which is about eight inches of steel and concrete. When the computer is satisfied with the door, it fires the accelerator. Typical doses are between twenty and forty seconds, during which I have to remain very still. Then the door opens, the techs come back, the machine rotates to its next position, and we start all over again.

(I think the linear accelerator uses a target to generate its gamma-level radiation. Well, when I look it up, actually, the gamma range ends at 8MeV, so this is trans-gamma. Is there such a thing? But the radiation is generated by decelerating electrons against a target, so they're sort of X-rays. But given the energy levels, maybe they're Cerenkov radiation. Dunno. Wish I'd studied the physics a little harder. When the accelerator is operating in electron beam mode, I guess that the target is out of the way so that the electrons are emitted directly. What kind of barrier do they use to keep the vacuum in that is transparent to high speed electrons? Again, dunno.)

Radiation weeks 4, 5, 6

After the initial effects of the chemo, and before the radiation truck runs me over, I don't feel so bad. For several weeks in the middle, I work about half-time, from home of course, netted into the computers at work.