I had chemo a week and a half ago. Every time I have chemo, it runs me down a little bit further. I have been sleeping a lot - naps in the morning and afternoon. BTW - from 2:00 - 3:00 is officially naptime, so please don't call then.
I am pretty weak. I just tried to carry my hand truck up from the basement. A year ago I would have picked it up with one hand, and run up the stairs. Today I was wheezing for breath by the time I got up the basement stairs.
Side effects continue to be pretty minimal. My mouth sores are back, and I have been having problems with diarrhea. This is because the chemo attacks the fast growing cells - like your mucus membranes, the skin in your throat and mouth, and yes, the lining of your gut. I have been struggling to keep my weight up.
On the plus side, I went to see Mark Knopfler (from Dire Straits) at the Michigan Theatre the other night with my brother-in-law, Peter. I had gotten advance tickets through the fan club. I am pretty sure I got the first seats sold - on the aisle, first row. Mark wasn't feeling well, and sat on a stool directly in front of us. It was absolutely wonderful to be able to watch his guitar playing at close range.
The other big news concerns home improvements. Katie is moving home (tomorrow!), and we decided to get her room painted. One thing led to another, and now we are getting the whole upstairs painted. This has used up a lot of what little energy I have, preparing rooms for the painters.
Thursday, April 29, 2010
Saturday, April 10, 2010
Status Update
I actually feel pretty good today. Sue & I did the taxes, and I was able to sit in my Aeron chair for hours with no discomfort at all. The only problem I have is that I have a bad case of chemo mouth. I have several painful sores which make eating very difficult. I can't eat anything at all acidic. For example, I made spagetti sauce the other day, and it just burns.
On a lighter note, I received some "covers" (hats) from my cancer buddy, Frank. These include two authentic four-star general "covers". One is a bush hat that is a little big, and the other is a garrison cap that is too tight. Finally, Frank's daugher Natalie sent me an E-3 hat. This is all just in time, as my hair is just about gone.
On a lighter note, I received some "covers" (hats) from my cancer buddy, Frank. These include two authentic four-star general "covers". One is a bush hat that is a little big, and the other is a garrison cap that is too tight. Finally, Frank's daugher Natalie sent me an E-3 hat. This is all just in time, as my hair is just about gone.
Friday, April 9, 2010
A Medical Adventure
The other day I went to the hospital. I had three things to take care of:
The first thing that they did was hook up an access to the port that I have installed in my chest. I actually have two ports, just above my right breast, and they allow them to pump things into me under pressure. They tell me that pumping contrast dye into the stuckee under pressure is the bee's knees for getting high resolution pictures.
While she was hooking me up, the technician asked me if I had an infusion scheduled for after the CAT scan. If I had an appointment, she could leave me "accessed", so they wouldn't have to do it again. I said that I didn't have an infusion, but I did have a blood draw. She said they could take the draw through the port. I told her that they didn't want to do that. She said that they just didn't want to "access" me (what a verb!), but if I was already "accessed", they would do it. I had her call over and confirm all this with the blood draw lab.
A small side note about ports, for those of you fortunate enough not to use them. Getting "access" is a pretty involved process, involving actually hooking a line to the port, flushing it with heparin, confirming that blood will actually come back through the port, and flushing with saline. All of this involves connecting and disconnecting syringes to the "main line", and then injecting fluid, or drawing fluid, through the port.
Anyway, they did the first CAT scans, and then hooked me up for the infusion of contrast dye. I was told to expect that it would "feel warm, like you feel when you pee yourself" (lovely!). At the end of the scan, they flushed the line and then hooked up a syringe filled with saline to the line. They left the syringe dangling from the line, where it swung and bumped like Winnie-the-Pooh going down the stairs (bump, bump, bump).
(I should also note that I had little or no discomfort in this whole process. This is a huge improvement over what I experienced previously. Suffice to say that the previous scan seemed to take an eternity, and that I was screaming in pain by the end).
I dressed myself carefully, mindful of pulling the line out of my port. I decided to run the line on top of my T-shirt, and to leave off my hoodie. I put my coat over the ensemble, so as to avoid frightening random passersby.
I then walked about 1/4 mile to the blood draw lab in the cancer center. (bump, bump, bump).
Now the blood draw folks are a rather madcap lot. For example, when I approached the desk to check in, they allowed as how the lab was closed. "No problem, I'll wait".
"Until Monday"
"I'll wait." I really love these guys, and I am more than happy to play along with the gag.
They took my ID card and parking ticket, and sent me into the lobby to wait. I walked over and took a seat (bump, bump, bump).
A few minutes later they called my name, and I went back and had a seat at the blood draw station. I opened my shirt and showed them my syringe, dangling from my main line. The phlebotomist was visably shaken. She went away for a consult.
Within a minute or so, I had about six people standing around me, shaking their heads. One of them allowed that "they've done this before". A battle-scarred LPN about my age took over, promising that she would "call over there" when she was done with the blood draw. A couple more flushes, blood draws, etc., and I was done. In the whole ordeal, the only thing that hurt at all was when they took a large piece of clear tape off my port. I waundered off to pick up my prescription.
I don't have any moral or great wisdom from all this. I just found the whole experience rather humorous.
- I had to have a CAT scan, chest and pelvis
- I had to have a blood draw
- I had to pick up a prescription
The first thing that they did was hook up an access to the port that I have installed in my chest. I actually have two ports, just above my right breast, and they allow them to pump things into me under pressure. They tell me that pumping contrast dye into the stuckee under pressure is the bee's knees for getting high resolution pictures.
While she was hooking me up, the technician asked me if I had an infusion scheduled for after the CAT scan. If I had an appointment, she could leave me "accessed", so they wouldn't have to do it again. I said that I didn't have an infusion, but I did have a blood draw. She said they could take the draw through the port. I told her that they didn't want to do that. She said that they just didn't want to "access" me (what a verb!), but if I was already "accessed", they would do it. I had her call over and confirm all this with the blood draw lab.
A small side note about ports, for those of you fortunate enough not to use them. Getting "access" is a pretty involved process, involving actually hooking a line to the port, flushing it with heparin, confirming that blood will actually come back through the port, and flushing with saline. All of this involves connecting and disconnecting syringes to the "main line", and then injecting fluid, or drawing fluid, through the port.
Anyway, they did the first CAT scans, and then hooked me up for the infusion of contrast dye. I was told to expect that it would "feel warm, like you feel when you pee yourself" (lovely!). At the end of the scan, they flushed the line and then hooked up a syringe filled with saline to the line. They left the syringe dangling from the line, where it swung and bumped like Winnie-the-Pooh going down the stairs (bump, bump, bump).
(I should also note that I had little or no discomfort in this whole process. This is a huge improvement over what I experienced previously. Suffice to say that the previous scan seemed to take an eternity, and that I was screaming in pain by the end).
I dressed myself carefully, mindful of pulling the line out of my port. I decided to run the line on top of my T-shirt, and to leave off my hoodie. I put my coat over the ensemble, so as to avoid frightening random passersby.
I then walked about 1/4 mile to the blood draw lab in the cancer center. (bump, bump, bump).
Now the blood draw folks are a rather madcap lot. For example, when I approached the desk to check in, they allowed as how the lab was closed. "No problem, I'll wait".
"Until Monday"
"I'll wait." I really love these guys, and I am more than happy to play along with the gag.
They took my ID card and parking ticket, and sent me into the lobby to wait. I walked over and took a seat (bump, bump, bump).
A few minutes later they called my name, and I went back and had a seat at the blood draw station. I opened my shirt and showed them my syringe, dangling from my main line. The phlebotomist was visably shaken. She went away for a consult.
Within a minute or so, I had about six people standing around me, shaking their heads. One of them allowed that "they've done this before". A battle-scarred LPN about my age took over, promising that she would "call over there" when she was done with the blood draw. A couple more flushes, blood draws, etc., and I was done. In the whole ordeal, the only thing that hurt at all was when they took a large piece of clear tape off my port. I waundered off to pick up my prescription.
I don't have any moral or great wisdom from all this. I just found the whole experience rather humorous.
Results of CAT Scan
Well, I received the results of the CAT scan, and they are... mixed. The tumors in my lungs have all shrunk significantly - going from 6mm to 4mm, things like that. The tumor in my pelvis, it appears to have either stayed the same or possibly grown some. Specifically, they think that it is growing into the sacroilliac joint.
In the cover letter to the CAT scan, my doctor's PA, Katie, said that the tumor was "Grossly stable". She also said that I should be encouraged because the pain level in my hip was down so much. (Which it is - I can almost cross my right foot over the left knee. Four weeks ago, I couldn't move my right foot toward my left knee without excruciating pain).
So I don't know what to think. I am glad that the tumors in the lungs are shrinking. I am certainly glad that the tumor in my pelvis isn't causing me the pain it was. I am hoping that while the tumor in my pelvis isn't shrinking in size, it is shrinking in mass. That is the only explanation that I have for why it doesn't hurt nearly as much as it used to. The only other explanation that I have is that it is interfering with the nerves so much (especially the sciatic nerve) that it is blocking the pain. However, I don't appear to have other neurological issues - weakness, numbness, etc.
I have an appointment with my medical oncologist on Thursday the 15th. Maybe he will be able to shed more light on the situation then. In the meantime, I am taking what comfort I can in the news
In the cover letter to the CAT scan, my doctor's PA, Katie, said that the tumor was "Grossly stable". She also said that I should be encouraged because the pain level in my hip was down so much. (Which it is - I can almost cross my right foot over the left knee. Four weeks ago, I couldn't move my right foot toward my left knee without excruciating pain).
So I don't know what to think. I am glad that the tumors in the lungs are shrinking. I am certainly glad that the tumor in my pelvis isn't causing me the pain it was. I am hoping that while the tumor in my pelvis isn't shrinking in size, it is shrinking in mass. That is the only explanation that I have for why it doesn't hurt nearly as much as it used to. The only other explanation that I have is that it is interfering with the nerves so much (especially the sciatic nerve) that it is blocking the pain. However, I don't appear to have other neurological issues - weakness, numbness, etc.
I have an appointment with my medical oncologist on Thursday the 15th. Maybe he will be able to shed more light on the situation then. In the meantime, I am taking what comfort I can in the news
Monday, April 5, 2010
Status Update
I was very tired today, after probably doing too much yesterday. I spent most of the day lying on the couch, reading The Big Short and napping. My butt is sore, but I do not know if it is because I did too much yesterday, or for a more sinister reason. I have an MRI this Thursday, so hopefully by the end of the week I will know better how I am progressing.
ObamaCare, Evidence Based Medicine and Me
The cornerstone of ObamaCare is something called "Evidence Based Medicine" (EBM). A recent New York Times article stated that fully half of the two thousand odd pages of the recently enacted healthcare bill dealt with programs of research to reduce the cost of healthcare by use of EBM.
EBM attempts "to apply the best scientific evidence gained from research to medical decision making". It "seeks to assess the quality of evidence of the risks and benefits and treatments (including lack of treatment)" (Wikipedia, Evidence Based Medicine). In other words, it uses a risk based model in determining treatment options. This results in protocols, or clinical treatment plans, being developed which address the higher payoffs first, and then the next highest, etc.
Notice that when they are assessing risks, they are using a combination of probability (what is the likelihood that a diagnosis is correct) and outcome (what is the impact if the diagnosis is correct). They are not looking at what the potential worst outcome is and treating that first. My own case clearly illustrates this point.
When I presented myself to my Primary Care Physician, Dr. X, my symptoms had all of the hallmarks of a problem with the sacroiliac joint, which is the joint where the spine and the hips come together. The doctor did a brief (approximately ten minute) examination where he asked me to describe the pain and where it was, did a neurological exam (looking to see whether nerves were directly being affected) and palpated the area, looking for masses which he did not find.
The protocol for treating had several steps: first, a combination of anti-inflammatory drugs and physical therapy for a period of months. If this is not successful, assessment and treatment by a spinal specialist. The spinal specialist also has several treatment options, including direct injection of affected areas with steroids to improve mobility, mobilization of the joint and more advanced imaging.
Now a much clearer diagnosis could have been found by ordering an MRI. This would likely have definitively shown where my problem lay. Why wasn't an MRI taken? Because the cost of the MRI was not justified by the likelihood that impact was as severe as mine turned out to be.
The MRI that finally diagnosed my cancer cost approximately $2000. While literally millions of patients with my symptoms go the doctor each year, a very, very, very small fraction turn out to have cancer. I have found statistics that suggest that there are fewer than 1000 adult cases of osteo-sarcoma in the US, and only a fraction of those would have had symptoms that matched mine. A larger population of patients with severely herniated or ruptured discs present (approximately 2%), but they typically present with neurological symptoms that I simply did not have. There are other problems that can present with similar symptoms, some with dire impact, but again they are very low probability events.
It is simply extremely costly to MRI every patient presenting with my symptoms, on the off chance that they might have cancer. Say that 1% of population of the US presents to their doctor with lower back symptoms in a year. This would yield a population of three million people. Let's say that 250 cases of osteo sarcoma could be found this way. That means that the cost of finding those cases would be ((3,000,000/250)*$2000) or twenty-four million dollars each. It is much cheaper to treat the most likely cause and see if they get better. If they don't, then treat the next more likely cause, etc. I would bet that it is only when you get multiple standard deviations from the mean that you get to cases that require the MRI to diagnose and treat. The savings are, quite simply, enormous.
(Please note that I am making a lot of these statistics up - I have no idea how many patients present with lower back pain each year, nor do I know what percentage of those cases turn out to be cancer. The actual number will differ wildly from what I have shown here, which is strictly for illustrative purposes).
The fact is that I went completely through both tier one (Physical Therapy) and tier two (examination and treatment by a spinal specialist) before they got to the point where my Primary Care Physician decided to get an MRI, and that is only because he found me writhing in pain on his examination room floor after he kept my waiting for an hour. During that time I was examined by no fewer than four doctors, not including the ones who examined the x-rays that the spinal specialist had taken and the physical therapist who treated me. In addition to the x-rays, I also had several ultra-sounds, none of which found a tumor the size of a medium potato.
A more aggressive doctor might have ordered the MRI anyway, particularly when I reported repeatedly that my pain was increasing week-to-week, despite treatment. It is very likely that if the MRI had been taken at the beginning of my treatment, my cancer would not have metastasized, nor would it have grown into my sacrum, both of which would have had dramatic impact on my current prognosis. In other words, if I had been treated by what ObamaCare and EBM would consider a "bad" doctor, one who runs unnecessary procedures, both my life expectancy and my quality of life would be a lot better right now.
So how do I feel about all this? First of all, I recognize that I am, first and foremost, incredibly unlucky. The odds of someone my age getting what I have gotten are really spectacularly low. I recognize that treating with an MRI would be prohibitively expensive. $24 million dollars will pay for an awful lot of health-care for somebody. Yet, at the same time, I recognize that I am a hidden part of the cost of ObamaCare and EBM. Some people are definitely going to get sicker and die that wouldn't otherwise because of EBM. However, I also recognize that a vastly larger population are going to be treated and get well that otherwise would not. The payoff to society is clear.
So I feel resigned to my fate. I am not particularly angry at my doctors for not giving me an MRI sooner, because I feel that I understand the reasons why they didn't. I am just very, very unlucky. I do question whether they should have examined me sooner when physical therapy failed, though.
And yet, and yet, I look out the window on a beautiful Spring morning, and I wonder, what if?
EBM attempts "to apply the best scientific evidence gained from research to medical decision making". It "seeks to assess the quality of evidence of the risks and benefits and treatments (including lack of treatment)" (Wikipedia, Evidence Based Medicine). In other words, it uses a risk based model in determining treatment options. This results in protocols, or clinical treatment plans, being developed which address the higher payoffs first, and then the next highest, etc.
Notice that when they are assessing risks, they are using a combination of probability (what is the likelihood that a diagnosis is correct) and outcome (what is the impact if the diagnosis is correct). They are not looking at what the potential worst outcome is and treating that first. My own case clearly illustrates this point.
When I presented myself to my Primary Care Physician, Dr. X, my symptoms had all of the hallmarks of a problem with the sacroiliac joint, which is the joint where the spine and the hips come together. The doctor did a brief (approximately ten minute) examination where he asked me to describe the pain and where it was, did a neurological exam (looking to see whether nerves were directly being affected) and palpated the area, looking for masses which he did not find.
The protocol for treating had several steps: first, a combination of anti-inflammatory drugs and physical therapy for a period of months. If this is not successful, assessment and treatment by a spinal specialist. The spinal specialist also has several treatment options, including direct injection of affected areas with steroids to improve mobility, mobilization of the joint and more advanced imaging.
Now a much clearer diagnosis could have been found by ordering an MRI. This would likely have definitively shown where my problem lay. Why wasn't an MRI taken? Because the cost of the MRI was not justified by the likelihood that impact was as severe as mine turned out to be.
The MRI that finally diagnosed my cancer cost approximately $2000. While literally millions of patients with my symptoms go the doctor each year, a very, very, very small fraction turn out to have cancer. I have found statistics that suggest that there are fewer than 1000 adult cases of osteo-sarcoma in the US, and only a fraction of those would have had symptoms that matched mine. A larger population of patients with severely herniated or ruptured discs present (approximately 2%), but they typically present with neurological symptoms that I simply did not have. There are other problems that can present with similar symptoms, some with dire impact, but again they are very low probability events.
It is simply extremely costly to MRI every patient presenting with my symptoms, on the off chance that they might have cancer. Say that 1% of population of the US presents to their doctor with lower back symptoms in a year. This would yield a population of three million people. Let's say that 250 cases of osteo sarcoma could be found this way. That means that the cost of finding those cases would be ((3,000,000/250)*$2000) or twenty-four million dollars each. It is much cheaper to treat the most likely cause and see if they get better. If they don't, then treat the next more likely cause, etc. I would bet that it is only when you get multiple standard deviations from the mean that you get to cases that require the MRI to diagnose and treat. The savings are, quite simply, enormous.
(Please note that I am making a lot of these statistics up - I have no idea how many patients present with lower back pain each year, nor do I know what percentage of those cases turn out to be cancer. The actual number will differ wildly from what I have shown here, which is strictly for illustrative purposes).
The fact is that I went completely through both tier one (Physical Therapy) and tier two (examination and treatment by a spinal specialist) before they got to the point where my Primary Care Physician decided to get an MRI, and that is only because he found me writhing in pain on his examination room floor after he kept my waiting for an hour. During that time I was examined by no fewer than four doctors, not including the ones who examined the x-rays that the spinal specialist had taken and the physical therapist who treated me. In addition to the x-rays, I also had several ultra-sounds, none of which found a tumor the size of a medium potato.
A more aggressive doctor might have ordered the MRI anyway, particularly when I reported repeatedly that my pain was increasing week-to-week, despite treatment. It is very likely that if the MRI had been taken at the beginning of my treatment, my cancer would not have metastasized, nor would it have grown into my sacrum, both of which would have had dramatic impact on my current prognosis. In other words, if I had been treated by what ObamaCare and EBM would consider a "bad" doctor, one who runs unnecessary procedures, both my life expectancy and my quality of life would be a lot better right now.
So how do I feel about all this? First of all, I recognize that I am, first and foremost, incredibly unlucky. The odds of someone my age getting what I have gotten are really spectacularly low. I recognize that treating with an MRI would be prohibitively expensive. $24 million dollars will pay for an awful lot of health-care for somebody. Yet, at the same time, I recognize that I am a hidden part of the cost of ObamaCare and EBM. Some people are definitely going to get sicker and die that wouldn't otherwise because of EBM. However, I also recognize that a vastly larger population are going to be treated and get well that otherwise would not. The payoff to society is clear.
So I feel resigned to my fate. I am not particularly angry at my doctors for not giving me an MRI sooner, because I feel that I understand the reasons why they didn't. I am just very, very unlucky. I do question whether they should have examined me sooner when physical therapy failed, though.
And yet, and yet, I look out the window on a beautiful Spring morning, and I wonder, what if?
Friday, April 2, 2010
Status Update
I completed my second round of chemo on Wednesday, when they removed the portable infuser. I continue to have little or no side effects from the chemo - very little nausea, a little dry mouth, tired. Other than that I am fine. My appetite is OK. I continue to be plagued by plumbing problems that I need not go into here.
My spirits are pretty good. I am starting to look forward to "life after chemo" (which is likely to mean "life during surgery"). My own personal prediction is that I will be done with surgery sometime this Summer, which would hopefully mean I would be up and around in early fall. How about that.
I think that the tumor continues to shrink in my right buttock. I noticed this morning that it was easier getting my pants and shoes on. I am really gaining an appreciation for the little things in life.
I am thinking of making a bucket list - anyone have any ideas? I know that I would like to see several natural sights that I have put off over the years, and there is a trip I would like to take with Susie. All of these seem a little shallow. Perhaps I have to stop watching Morgan Freeman movies.
My spirits are pretty good. I am starting to look forward to "life after chemo" (which is likely to mean "life during surgery"). My own personal prediction is that I will be done with surgery sometime this Summer, which would hopefully mean I would be up and around in early fall. How about that.
I think that the tumor continues to shrink in my right buttock. I noticed this morning that it was easier getting my pants and shoes on. I am really gaining an appreciation for the little things in life.
I am thinking of making a bucket list - anyone have any ideas? I know that I would like to see several natural sights that I have put off over the years, and there is a trip I would like to take with Susie. All of these seem a little shallow. Perhaps I have to stop watching Morgan Freeman movies.
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