I got the call today that I really needed to hear, but never expected. (I have to admit this is written through tear drop eyes.) My chemo has been canceled.
Not because it would be worthless, but because it was deemed unnecessary. Yes, unnecessary. The first step towards the painful operation that would have killed me is now not needed. I am of course astounded. And then some.
My CA19-9 report came in late this afternoon, and it reported that my cancer calling card had diminished by 66%. Thud. The bottom of my threat to existence had dropped to nothing, so no chemo, no life threatening issue, all over and done.
Except for the residual part about What the Fuck is this all about? I am beat up, hornswoggled, shanghaied and beat to crap, and then it is all over and done and I walk away? I welcome it and I hurt because of it.
Well, this is a situation I never thought I would be in. Fuck me. Sort of.
Friday, April 29, 2011
Amazing Bureaucratic Surprise
I got a call today from the Social Security Administration. The young lady wanted to talk to me about the time when my pancreatic cancer symptoms started manifesting because if I claimed 2010 I would be outside the limits for having worked and then claimed disability. There is a limit of something like 7 years, you must have paid into SS within the last 7 years if you want to claim disability. She maneuvered me to claiming that the first symptoms were actually in September 2008, which is absolutely true. I was losing weight then and I had definite symptoms in September that led to me being under a doctor's care from October through December of that year, prior to my actual diagnosis in March of 2009. That minor change then made me eligible for disability payments.
The truly amazing thing is that the bureaucracy was able to turn on a dime so to speak and actually worked with me to ensure my eligibility. I am truly amazed. At the end of our conversation the young lady said that my eligibility seemed assured and that I would likely hear from the Austin office within a few weeks and that she expected my payment to be at or near the maximum allowable of what I expected when I will be 65. The result is that I should start drawing my full allowance three years early. You cannot imagine the good news this is to me. A major weight has been lifted from my shoulders, I will be able to contribute to the household income while I endure the cancer. This also means I can shift my focus entirely to living life and dealing with the cancer.
My medical situation is getting a bit more complex. I requested and was given the radiology exam results for my last several CT scans. I have forwarded them to my surgeon in New York for a second opinion on my status. This is because I sensed some confusion in the diagnosis leading up to my re-entry into chemotherapy. One of the things that seemed to be a trigger was the concern over the Superior Mesenteric Vein, which was resectioned during surgery and does not appear normally in the scans. The radiologist repeatedly takes exception to the appearance of that blood vessel in the CT results. Another issue seems to be that the lymph glands around the original site of the cancer seemed to be enlarged, which was noted on my post surgery examinations. These conditions seemed to be caused by the massive post op infection I had in that area. If these conditions are not agreed upon as being caused by the surgery then they can be construed as evidence of a recurrence of cancer. So I am trying to set a conversation up between the New York team and the local team so they both see the same situation. I have a history of taking an active roll in my care, particularly finding a surgeon who could operate on my supposed inoperable and hence fatal condition. This is but another case where I feel medical science is a little too prone to human shortcomings. Tomorrow I will go by and get CDs of the CT exams and FedEx them to NYC for evaluation. Maybe nothing will come of it and maybe something will. At the very least maybe it will lead to some sort of conference on my situation that will possibly clear up some things.
This post is being composed at 3:30 in the morning because cancer and chemo rob you of your normal sleep schedule. Most nights I sleep four hours at a time at most unless I take sleep aids. And they usually leave me groggy the next day. So I take them only when necessary. Obviously I did not take them tonight. My midnight snack is done so I am going back to bed and will try to get some sleep.
The truly amazing thing is that the bureaucracy was able to turn on a dime so to speak and actually worked with me to ensure my eligibility. I am truly amazed. At the end of our conversation the young lady said that my eligibility seemed assured and that I would likely hear from the Austin office within a few weeks and that she expected my payment to be at or near the maximum allowable of what I expected when I will be 65. The result is that I should start drawing my full allowance three years early. You cannot imagine the good news this is to me. A major weight has been lifted from my shoulders, I will be able to contribute to the household income while I endure the cancer. This also means I can shift my focus entirely to living life and dealing with the cancer.
My medical situation is getting a bit more complex. I requested and was given the radiology exam results for my last several CT scans. I have forwarded them to my surgeon in New York for a second opinion on my status. This is because I sensed some confusion in the diagnosis leading up to my re-entry into chemotherapy. One of the things that seemed to be a trigger was the concern over the Superior Mesenteric Vein, which was resectioned during surgery and does not appear normally in the scans. The radiologist repeatedly takes exception to the appearance of that blood vessel in the CT results. Another issue seems to be that the lymph glands around the original site of the cancer seemed to be enlarged, which was noted on my post surgery examinations. These conditions seemed to be caused by the massive post op infection I had in that area. If these conditions are not agreed upon as being caused by the surgery then they can be construed as evidence of a recurrence of cancer. So I am trying to set a conversation up between the New York team and the local team so they both see the same situation. I have a history of taking an active roll in my care, particularly finding a surgeon who could operate on my supposed inoperable and hence fatal condition. This is but another case where I feel medical science is a little too prone to human shortcomings. Tomorrow I will go by and get CDs of the CT exams and FedEx them to NYC for evaluation. Maybe nothing will come of it and maybe something will. At the very least maybe it will lead to some sort of conference on my situation that will possibly clear up some things.
This post is being composed at 3:30 in the morning because cancer and chemo rob you of your normal sleep schedule. Most nights I sleep four hours at a time at most unless I take sleep aids. And they usually leave me groggy the next day. So I take them only when necessary. Obviously I did not take them tonight. My midnight snack is done so I am going back to bed and will try to get some sleep.
Wednesday, April 27, 2011
Long and dark day today
This morning I went to the Social Security Administration to file for disability on account of the pancreatic cancer. I filed electronically yesterday. They have a special consideration feature in the software that detects mention of or reference too any one of 88 diseases that are on a specified list and those identified applications get fast tracked for evaluation. Pancreatic cancer is on that list. I went today to hand in paperwork verifying my medical history and to show my smiling face. (Amazing that you can file electronically but have to hand in additional paperwork rather than send a .pdf file.)I haven't paid in to SS for several years on account of having no work so I may get disqualified there. Let's just see if they allow me some slack.
Later in the day I went to get the results of my CT scan read to me. It was bad. They used medical terminology to say that several lymph glands near the site of the previous cancer appear to be turning cancerous. It doesn't get much worse than that. I start chemotherapy Friday, and Monday is my first infusion. It is the old schedule only this time they will test my blood after each 3 week cycle rather than 9 weeks to decide if they are going to continue. If it continues for two or more of those cycles I will go bald again. Not that it matters, most of the time I will be too tired to do anything like go out or to the store to be seen in public. And the green chemo skin is sort of off putting to some women and most children anyway. This could go on for several months again.
Having gone through three chemo cycles before and knowing the gravity of pancreatic cancer I am scared. The sort of scared you get when you know you are going into battle and there is a chance you ain't gonna make it out alive. That's pretty much how it this time. When the pancreatic cancer comes back, it comes roaring back. This is round two and the cancer is angry at me.
I expect soon the specter of death will come to my door to continue our nightly poker games and exchanges of witty comments like before. I never missed him so much that I wanted him to come back. A future that looked like it might be five years or more suddenly became not so certain.
Later in the day I went to get the results of my CT scan read to me. It was bad. They used medical terminology to say that several lymph glands near the site of the previous cancer appear to be turning cancerous. It doesn't get much worse than that. I start chemotherapy Friday, and Monday is my first infusion. It is the old schedule only this time they will test my blood after each 3 week cycle rather than 9 weeks to decide if they are going to continue. If it continues for two or more of those cycles I will go bald again. Not that it matters, most of the time I will be too tired to do anything like go out or to the store to be seen in public. And the green chemo skin is sort of off putting to some women and most children anyway. This could go on for several months again.
Having gone through three chemo cycles before and knowing the gravity of pancreatic cancer I am scared. The sort of scared you get when you know you are going into battle and there is a chance you ain't gonna make it out alive. That's pretty much how it this time. When the pancreatic cancer comes back, it comes roaring back. This is round two and the cancer is angry at me.
I expect soon the specter of death will come to my door to continue our nightly poker games and exchanges of witty comments like before. I never missed him so much that I wanted him to come back. A future that looked like it might be five years or more suddenly became not so certain.
Sunday, April 24, 2011
Dropping in for a visit
I haven't blogged in a while. Not that there is nothing to talk about, I am just out a lot more and doing things. When I can. I am going through another phase right now that nobody tells you about. It is called "panc coming back" and it is a blood sugar roller coaster ride. It goes like this; get your really high blood sugar reading, take some 70/30 insulin, get a blood sugar low, drink some orange juice, get a bizarre blood sugar reading, then feel like crap for two days. One day I woke up with a blood sugar reading near 500. The day before it was near normal, I mean really normal, like 115. Two days before that I had taken some insulin when my blood sugars were 190 or so. Twenty minutes later I was in a sugar low dive and desperate to level out and come back. That's pretty much it in a nutshell. It happens every few days. In between episodes I can feel really bad or okay. Random chance near as I can tell. Today is good. Friday not so much.
Another weird side effect is back aches. Real monster, nauseating backaches that destroyed any hope of sleeping. And they only happened at night. I was fine all day long, tired maybe but no backache. Then I would sit down in my easy chair at night or try to go to bed and the aches would come like a wave of misery, so deep and all consuming that I would end up vomiting. My first solution was to curl up in the fetal position to stretch the back muscles. That helped but it did not solve the problem. I went to a couple of chiropractors and they manipulated my back and neck and hips. Snap crackle pop, throwing bones down a flight of stairs it sounded like. A couple days later it would all came back, pain, nausea, vomiting. Finally one night I was out on my deck where I keep a weight bar loaded with some 70 pounds of weights. I used to work out with them before I got sick. I tried the rifle man's lift, the weights held overhead and lowered behind my head, raised and lowered several times. That hit most of the offending muscle group and my back. In five minutes I had worked out most of the pain and I was on the road to recovery. I have since worked a few more exercises in that finish off the area and the back pain has all but subsided. I actually sleep like a baby at night now. For a few hours anyway, I'm still a cancer/chemo patient even though it has been over a year since my last chemo and they haven't found any cancer in me since my operation. The effects of the cancer trauma are very long lasting.
Then there is the discovery of the protein shake drinks. Great stuff, already mixed, get your protein all ready to go. I tried them. Everything has side effects, no exception here. I started sleeping like a baby. No, not real sound, dead sleep at night; no, I needed a nap every few hours. I would fall asleep like a baby would, I would go from wide awake to droopy eyed and dead mentally and physically in a few minutes. I'd drag myself to bed, sleep for an hour and wake up refreshed then rinse and repeat. But I noticed that my muscles were different, they were growing. All that protein and my muscles were taking it in like candy. I woke up and actually discovered I had chest muscles again. They seem to be growing without really working them out. And my arm muscles as well. I even put on 5 pounds, after continuously losing weight over the months since coming home from New York I was gaining weight. So many changes, so many mysteries to solve and live through.
I talked to a friend I met in the hospital yesterday. I hadn't called him for quite a while because it was very difficult for me to deal with the problems of other people, I just didn't have the emotional strength to deal with what could be bad news. He was in for his third pancreatic cancer operation when I met him. First the original pancreatic cancer and they operated and removed half his panc, then the cancer spread to his lung so they took part of his lung, then it came back in his panc and they removed the last of it. Last I had heard he was scared that he was losing weight so fast that he was going to die. So I called finally and talked to him. He is fine, but he weighs 130 pounds. I told him about the protein drinks and he is really anxious to try them. He also is having back pains. I told him my solution, maybe it will work for him as well. I hope so.
I have more to talk about but I am done for today.
Another weird side effect is back aches. Real monster, nauseating backaches that destroyed any hope of sleeping. And they only happened at night. I was fine all day long, tired maybe but no backache. Then I would sit down in my easy chair at night or try to go to bed and the aches would come like a wave of misery, so deep and all consuming that I would end up vomiting. My first solution was to curl up in the fetal position to stretch the back muscles. That helped but it did not solve the problem. I went to a couple of chiropractors and they manipulated my back and neck and hips. Snap crackle pop, throwing bones down a flight of stairs it sounded like. A couple days later it would all came back, pain, nausea, vomiting. Finally one night I was out on my deck where I keep a weight bar loaded with some 70 pounds of weights. I used to work out with them before I got sick. I tried the rifle man's lift, the weights held overhead and lowered behind my head, raised and lowered several times. That hit most of the offending muscle group and my back. In five minutes I had worked out most of the pain and I was on the road to recovery. I have since worked a few more exercises in that finish off the area and the back pain has all but subsided. I actually sleep like a baby at night now. For a few hours anyway, I'm still a cancer/chemo patient even though it has been over a year since my last chemo and they haven't found any cancer in me since my operation. The effects of the cancer trauma are very long lasting.
Then there is the discovery of the protein shake drinks. Great stuff, already mixed, get your protein all ready to go. I tried them. Everything has side effects, no exception here. I started sleeping like a baby. No, not real sound, dead sleep at night; no, I needed a nap every few hours. I would fall asleep like a baby would, I would go from wide awake to droopy eyed and dead mentally and physically in a few minutes. I'd drag myself to bed, sleep for an hour and wake up refreshed then rinse and repeat. But I noticed that my muscles were different, they were growing. All that protein and my muscles were taking it in like candy. I woke up and actually discovered I had chest muscles again. They seem to be growing without really working them out. And my arm muscles as well. I even put on 5 pounds, after continuously losing weight over the months since coming home from New York I was gaining weight. So many changes, so many mysteries to solve and live through.
I talked to a friend I met in the hospital yesterday. I hadn't called him for quite a while because it was very difficult for me to deal with the problems of other people, I just didn't have the emotional strength to deal with what could be bad news. He was in for his third pancreatic cancer operation when I met him. First the original pancreatic cancer and they operated and removed half his panc, then the cancer spread to his lung so they took part of his lung, then it came back in his panc and they removed the last of it. Last I had heard he was scared that he was losing weight so fast that he was going to die. So I called finally and talked to him. He is fine, but he weighs 130 pounds. I told him about the protein drinks and he is really anxious to try them. He also is having back pains. I told him my solution, maybe it will work for him as well. I hope so.
I have more to talk about but I am done for today.
Subscribe to:
Posts (Atom)