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
Endgame
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.
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
Christmas
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?
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.
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.
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.
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 l
ot, 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.
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 l
ot, 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.
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.
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.
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.
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.
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.
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."
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."
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