Remission.
This word is an attempt at humor. Maybe it's just an expression of irony. Some cancers are curable, some aren't--Myeloma isn't. Remission in the case of Myeloma is the period between one's last bout with chemotherapy and one of the medical events I described in my last entry, or else some other medical event I haven't yet written down here.
I'm in remission. I'm done with chemotherapy, and looking toward a significant medical procedure. I guess I haven't actually talked about the transplant yet. I'm in line for a peripheral autologous stem-cell transplant. I'll go to Seattle for about three months to get this done. It looks like I'll go up there sometime in September.
The docs there will install a Hickman Catheter in my chest. Over the period of a few days they'll use it to withdraw a quantity of my blood, from which they will extract the some blood cells, clean them up, process them to recover the stem-cells and eliminate any stray myeloma cells that might be there, then freeze these cells, so they can store them for a while. Then they'll hit me with chemicals and /or radiation, which will pretty much sterilize my blood and bone--the immune system will be totally destroyed. Then they'll put the stem cells back into my body. The stem cells will differentiate, then begin to reproduce, and eventually rebuild my immune system.
While this is happening, I'll live in an isolation ward. People will put on gowns and wear masks when they come to visit. I will be weak, and need a nurse to take care of me for a while. Mucus membranes will slough, taste buds will get a chemical thrill, hair falls out. All that. I'll be in the isolation ward for a few weeks. I may develop an attitude problem off this phase of my treatment. It might take as long as a year before my immune system recovers.
According to the stats that describe the state of the art, I'll be symptom free for maybe three or so years. Eventually the Myeloma cells will return. I have a few other temporary remedies at my disposal, but they will only stall the process. I have spent the past three or four months coming to grips with these details. This is where irony blends into that sort of gentle cancer humor I'm learning to appreciate. The word survivor has been re-defined, for example. Optimism has blended shades of meaning, too. Right now, on account of how medical research is still leaping an bounding, optimism is still connected to survival. For example, in three years, someone might develop a vaccine that renders myeloma a mere nuisance. I'm still optimistic. Later on in the process, I may let go of the optimism, and work on the finer details that attend the notion of acceptance. You can extrapolate all that on your own time. I've got all this stuff in the bag already.
Needless to say this is harder on RedBud than it is on me.
I did time on the PICC line this summer. A PICC line was inserted into a vien in my upper arm, and its tip stopped in the large vein a couple of inches above my heart. A valve on the running end of an external infusion line dangled from my arm. I wore a cuff made of cotton mesh on my upper arm to stow and protect the valve when it wasn't in use. I plugged a chemical bag into the valve once a month. I wore the bag for 96 hours. In the bag with the chemicals was a rather expensive in fusion pump. I slept with the pump like it was a newborn baby. A little green LED on the pump blinked every two seconds to let me know it was still alive.
I got a thrombosis during the first infusion cycle. That was sort of exciting. Had to pull the PICC line and take blood thinners for a while. That sucked, actually. I spent a few days in Portland, in ICU, while they shot me up with stuff. It was sort of uncomfortable when the clots were in the vien. The guy that read the ultra sound images said the vein had begun to clot from the insertion point all the way down into my chest as far as he could see. Felt like steel bands on my arm and chest. In the hospital, I had to be hooked up to an IV; had to push the IV stand around with me to the toilet. That first two days, I wasn't supposed to walk to the toilet, but I couldn't deal with the goddam bedpans in any meaningful way. Most of the major discomfort went away the second day, but I had to hang around for a few days to make sure all the clots were gone, and so the docs could figure out how to deal with this development. I got three weeks off from the PICC line for that, but had to have another one inserted for the next infustion cycle.
Anyhow, I'm done with all that PICC line stuff, and I won't have anymore chemotherapy until after they draw the stem cells in Seattle. I'm in remission.
Friday, August 27, 2004
Sunday, August 08, 2004
New terms
Below are a few new terms I learned during the past few months. The world they describe didn't really exist until I learned I had cancer. I've done my homework, and I know about these things, but they don't really come into focus until their time is ripe.
Event Free Survival Time.
Overall Survival Time.
Treatment Objectives:
1. Extending disease-free survival and the length of life;
2. Providing lasting relief of pain and other disease symptoms.
Terms:
Relapse: The disease begins to progress again.
Refractory: The disease doesn’t respond to treatment.
Palliative: The treatment is designed to reduce the symptoms and pain associated with the disease rather than to extend the survival of the patient.
Conventional Therapy: Cyclic treatment given to expose and kill myeloma cells. Conventional chemotherapy is typically given to older patients, or to patients who will undergo SCT
Salvage Therapy: Treatment for patients who have not responded to primary therapy or who experience relapsed disease. High dose dexamathasone alone or in combination with other drugs.
Radiation Therapy: To damage cancer cells and prevent them from growing. To stop bone damage, and/or in conjunction with Stem Cell Transplants.
Supportive Therapy: Address the symptoms and complications of the disease.
Event Free Survival Time.
Overall Survival Time.
Treatment Objectives:
1. Extending disease-free survival and the length of life;
2. Providing lasting relief of pain and other disease symptoms.
Terms:
Relapse: The disease begins to progress again.
Refractory: The disease doesn’t respond to treatment.
Palliative: The treatment is designed to reduce the symptoms and pain associated with the disease rather than to extend the survival of the patient.
Conventional Therapy: Cyclic treatment given to expose and kill myeloma cells. Conventional chemotherapy is typically given to older patients, or to patients who will undergo SCT
Salvage Therapy: Treatment for patients who have not responded to primary therapy or who experience relapsed disease. High dose dexamathasone alone or in combination with other drugs.
Radiation Therapy: To damage cancer cells and prevent them from growing. To stop bone damage, and/or in conjunction with Stem Cell Transplants.
Supportive Therapy: Address the symptoms and complications of the disease.
Friday, August 06, 2004
The point of the log
The first one is the hardest.
Summer here in southern Oregon is neon green when it first emerges from Spring. I like it just fine. I'm transplanted from California.
Life is a rope and a rope comes from threads. I wanted to write about how Multiple Myeloma changed my life. Problem is that it didn't make a huge change in what I do, but it did modify the way I look at what I do. No surprises there. But I don't think I can write it all--all those little threads are important, and looking at the rope is complicated, because I can't seem to see both the threads and the rope at the same time.
Our rental house overlooks the Rogue River. We're in a downstream sort of neighborhood, a mile or so downstream from the little town of Gold Hill. Gold Hill is a river town, with three restaurants and a Harley shop. Two of the restaurants are breakfast places, and the third serves excellent Mexican food. I could throw a rock, and on a lucky day, maybe I could hit the river from my back yard. It's for certain I could pick off the rafters with my wrist rocket--but I wouldn't. Not me. The walls in the living room and kithchen are all glass, so, even though our place is sort of small, we have decent ambience...brings the yard into the house, so to speak.
The landlord uses the 150 foot space between the house and the river as his landfill project, so part of our ambience include his piles of brush. In the winter he burns the garbage there, too. On the other hand he keeps the dump pretty tidy.
Out neighbors are accommodating. This is closer to people than RedBud and I have ever lived, but we are adapting. The landlord--his name is Bud--also owns a small place right in front of us. An experiment with the previous rentor was unsuccesful, and he's gone. He was a druggie, but a nice enough kid. About two weeks after they moved in he brought his project car over and dismantled it in the driveway, leaveing parts in stacks all around it. His girlfriend made him pick up the parts and pull the car into their carport. Shortly after that they had a spat. He broke the glass windon in the front door. The deputies arrived shortly thereafter, and looked on while she removed her belongings. He got notice from Bud some weeks later, to move, but he sort of tried to ignore it. Didn't work in the long run. He made friends with river trash who live a bit upstream, and they got to be a problem--people I don't know walking through the yard to the river, all hours of the day and night, knocking on his door at midnite or two in the afternoon, stuff like that.
Anyhow, he's gone, and a new couple moved in. He works nights. They don't play loud music. He claims they are spades players.
I found out about the MM in May, this year (2004). I had broken my hand in a freak accident, and radiolist told me the bone looked funny, and made sure I was having my regular doc follow up on it. Lindy Gomez at the Roseburd VA did her job the right way. In short order I was up a Portland, getting handled by the cancer people from the OHSU, or whatever it's called. They are linked to the VA both literally and figuratively--literally by a covered ramp.
I went to chemotherapy. Four months on a PICC line. Now I'm in remission, waiting for the final word on a stem-cell transplant. I'll do that in Seattle.
The chemotherapy wasn't as bad for me as I suppose it is for many people, but it was a roller coaster ride nevertheless. Kicked my ass pretty good, is what it did. Hair loss and pumpkin face, too, but by the time the fourth month came around those were the most noisome of the symptoms. Fatigue and out of control appetite were my companions. At first the appetite thing was okay, because I was losing a few pounds to the VAD regimine, a good thing.
But once the cancer was under control the weight loss stopped, and the appetite only slowed a little. I felt stuffed all the time. Anyhow that's done. I'm still weak, but I feel better than I have in a long time. My other blood problem used to kick my ass daily, but the steroids seem to have brought it under control. This is a good thing--no cappilliary bleeding and its associated pain for me to deal with.
I kept a fairly detail journal of all these happenings, so I'm not going to go into any more detail here in this blog. I do hope to keep up with my Seattle goings on, if I can figure out how to do it from Seattle. We are taking RedBud's laptop--a Mac--with us. I am not a Mac-qualified operator.
A stem-cell transplant is a big deal. I don't know how much it will cost the government to do this, but I'm grateful to them for doing their job on me. Briefly, persons with MM live about seven months after they discover they have it. This disease sucks your bones dry, and you die from associated pathologies, such as spinal collapse, kidney and liver failure, and other stuff. People with treatment live a few years longer. Right now about fifty percent of us hit the 5-7 year mark. A smaller lucky few of us last quite a bit longer, for various reasons. A statistically insignificant few of us who have alleogeneic stem cell transplants may be cured. I'm getting an autologous stem cell transplant.
Alleogeneic transplants require a donor with a near perfect HLA blood match...this takes a lot of luck in the stem-cell donor data base search, or a twin. Mortality from this process is high. Anyhow, I don't have a twin, so I'm going for the other one. New research is hopeful, and if I last five years, there may actually be a cure for this shit. Every day is a blessing, then.
I'm becoming familiar with a whole new set of terms, which I shall introduce in my next blog session.
Summer here in southern Oregon is neon green when it first emerges from Spring. I like it just fine. I'm transplanted from California.
Life is a rope and a rope comes from threads. I wanted to write about how Multiple Myeloma changed my life. Problem is that it didn't make a huge change in what I do, but it did modify the way I look at what I do. No surprises there. But I don't think I can write it all--all those little threads are important, and looking at the rope is complicated, because I can't seem to see both the threads and the rope at the same time.
Our rental house overlooks the Rogue River. We're in a downstream sort of neighborhood, a mile or so downstream from the little town of Gold Hill. Gold Hill is a river town, with three restaurants and a Harley shop. Two of the restaurants are breakfast places, and the third serves excellent Mexican food. I could throw a rock, and on a lucky day, maybe I could hit the river from my back yard. It's for certain I could pick off the rafters with my wrist rocket--but I wouldn't. Not me. The walls in the living room and kithchen are all glass, so, even though our place is sort of small, we have decent ambience...brings the yard into the house, so to speak.
The landlord uses the 150 foot space between the house and the river as his landfill project, so part of our ambience include his piles of brush. In the winter he burns the garbage there, too. On the other hand he keeps the dump pretty tidy.
Out neighbors are accommodating. This is closer to people than RedBud and I have ever lived, but we are adapting. The landlord--his name is Bud--also owns a small place right in front of us. An experiment with the previous rentor was unsuccesful, and he's gone. He was a druggie, but a nice enough kid. About two weeks after they moved in he brought his project car over and dismantled it in the driveway, leaveing parts in stacks all around it. His girlfriend made him pick up the parts and pull the car into their carport. Shortly after that they had a spat. He broke the glass windon in the front door. The deputies arrived shortly thereafter, and looked on while she removed her belongings. He got notice from Bud some weeks later, to move, but he sort of tried to ignore it. Didn't work in the long run. He made friends with river trash who live a bit upstream, and they got to be a problem--people I don't know walking through the yard to the river, all hours of the day and night, knocking on his door at midnite or two in the afternoon, stuff like that.
Anyhow, he's gone, and a new couple moved in. He works nights. They don't play loud music. He claims they are spades players.
I found out about the MM in May, this year (2004). I had broken my hand in a freak accident, and radiolist told me the bone looked funny, and made sure I was having my regular doc follow up on it. Lindy Gomez at the Roseburd VA did her job the right way. In short order I was up a Portland, getting handled by the cancer people from the OHSU, or whatever it's called. They are linked to the VA both literally and figuratively--literally by a covered ramp.
I went to chemotherapy. Four months on a PICC line. Now I'm in remission, waiting for the final word on a stem-cell transplant. I'll do that in Seattle.
The chemotherapy wasn't as bad for me as I suppose it is for many people, but it was a roller coaster ride nevertheless. Kicked my ass pretty good, is what it did. Hair loss and pumpkin face, too, but by the time the fourth month came around those were the most noisome of the symptoms. Fatigue and out of control appetite were my companions. At first the appetite thing was okay, because I was losing a few pounds to the VAD regimine, a good thing.
But once the cancer was under control the weight loss stopped, and the appetite only slowed a little. I felt stuffed all the time. Anyhow that's done. I'm still weak, but I feel better than I have in a long time. My other blood problem used to kick my ass daily, but the steroids seem to have brought it under control. This is a good thing--no cappilliary bleeding and its associated pain for me to deal with.
I kept a fairly detail journal of all these happenings, so I'm not going to go into any more detail here in this blog. I do hope to keep up with my Seattle goings on, if I can figure out how to do it from Seattle. We are taking RedBud's laptop--a Mac--with us. I am not a Mac-qualified operator.
A stem-cell transplant is a big deal. I don't know how much it will cost the government to do this, but I'm grateful to them for doing their job on me. Briefly, persons with MM live about seven months after they discover they have it. This disease sucks your bones dry, and you die from associated pathologies, such as spinal collapse, kidney and liver failure, and other stuff. People with treatment live a few years longer. Right now about fifty percent of us hit the 5-7 year mark. A smaller lucky few of us last quite a bit longer, for various reasons. A statistically insignificant few of us who have alleogeneic stem cell transplants may be cured. I'm getting an autologous stem cell transplant.
Alleogeneic transplants require a donor with a near perfect HLA blood match...this takes a lot of luck in the stem-cell donor data base search, or a twin. Mortality from this process is high. Anyhow, I don't have a twin, so I'm going for the other one. New research is hopeful, and if I last five years, there may actually be a cure for this shit. Every day is a blessing, then.
I'm becoming familiar with a whole new set of terms, which I shall introduce in my next blog session.
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