I am riht now wwaiting for granny to come find me. We got kicked out of our room because my roomate needtio many peopeple i there with him and it wa time for us to go. SHe took an extra run downwn to the care and I foung this open termial to do a post. I am feeling hamered but OK as ther first round of narly Chemo wnet in. We are about to driv back to COloma 3 hours if we are lucky. See ya. More soon.
S
Wednesday, June 25, 2008
Monday, June 16, 2008
It is Starting
Tonight we make our first run down to Stanford. I have appointments all day tomorrow so we are going ahead of time. More appointments later in the week and then the real treatment begins a week from today. I will be at home for most of July and the first part of August and then in the hospital for late August and most of September if everything goes right.
I feel as though I am entering uncharted water. I don't really know what to expect other than it is going to be really hard and probably pretty ugly. I don't know how I am going to respond to each of the different phases of the treatment. Am I going to be more tired, more nauseated, more weak? No way to know without doing it. My plan is to keep doing what I have been doing. Take it day by day and be as grateful as I can for what I've got. I feel really lucky that I have an old friend Thomas who lives near the hospital that has opened his house to me and my care takers. That is going to be a huge help.
I am still feeling pretty good as of late. The pain in my hip/ leg has gone down quite a bit and I am getting around really well. In general physically I am feeling good. I am just feeling nervous about the whole BMT process. I just really hope that it produces results. Only time and effort will tell. I have plenty of energy left for the effort. I wish there was a way to speed up the time and just get it done.
That's all I've got for now. I'll check back in when I get a chance. Just know I am going to be pretty busy for the next two weeks.
I feel as though I am entering uncharted water. I don't really know what to expect other than it is going to be really hard and probably pretty ugly. I don't know how I am going to respond to each of the different phases of the treatment. Am I going to be more tired, more nauseated, more weak? No way to know without doing it. My plan is to keep doing what I have been doing. Take it day by day and be as grateful as I can for what I've got. I feel really lucky that I have an old friend Thomas who lives near the hospital that has opened his house to me and my care takers. That is going to be a huge help.
I am still feeling pretty good as of late. The pain in my hip/ leg has gone down quite a bit and I am getting around really well. In general physically I am feeling good. I am just feeling nervous about the whole BMT process. I just really hope that it produces results. Only time and effort will tell. I have plenty of energy left for the effort. I wish there was a way to speed up the time and just get it done.
That's all I've got for now. I'll check back in when I get a chance. Just know I am going to be pretty busy for the next two weeks.
Tuesday, June 10, 2008
BMT Details
So we are pedal to the metal around here getting ready for the BMT. Stanford had a bunch of tests that we had to get done this week in order to start the the BMT next week. Luckily it had been planned months ago that the kids would go to Aunt Kathy's house for the week so it has been really easy for us to come and go as we please only taking care of our own needs.
I have been feeling really good for the last couple of days. Pretty much the best I have felt in a long time.
Today we went in for a bone marrow biopsy. Not fun. First they numb you up with lidacane Then they stick a needle in your back right at the crest of your hip bone and bust through the bone and into the marrow and pull out a little chunk. The lidacane works for everything except when they hit the bone and the marrow and then it hurts. It went pretty well. I actually walked in to the appointment and walked all the way out as well. First time I have done without the wheel chair in a long time and it felt really good to be under my own power.
Tomorrow I have to go back down for a pulmonary function test. Not sure how that works. I have a feeling I would have got high scores this time last year though. I go back on Friday for my regular once a month Chemo session. Not looking forward to that but it is part of the deal.
Next week I have a couple of meetings scheduled down at Stanford. It is a 3.5 hour drive if the traffic is not bad. If it is bad.... It could be really ugly. Then the BMT process begins the first part of the week after next. I say process because that is what it is. I have an overnight in the hospital where they give me a chemo injection. Then I am turned loose for a couple of weeks where I give my self a daily injections of a white blood cell booster. Then I go back when the time is right to have the bone marrow and stem cells removed from my blood. That takes a couple of days and then I go home and rest for two weeks. Then that process starts over again.
It wont be until late August that I actually get the bone marrow transplant. At that point what they really are doing is giving me a lethal dose of chemo drugs with the idea of killing all of the bad cancer cells. Then they rescue me with the stem cells that they took out earlier. At that point I am in special clean medical apartments provided by Stanford. My immunity will be non-existent. I'll spend at least a month in there with the help of my mom (Granny) if not longer that all depends on how I recover.
If everything goes perfectly I will be symptom free at the end of that process. I will take another couple of months (they say 3-6) to recover. At the end of that I am really looking forward to going back to my normal life. Starting work again. Riding my bike. Roughhousing with my kids cuddling with my wife.
I have a feeling that this is the beginning of the end. We'll see.
I have been feeling really good for the last couple of days. Pretty much the best I have felt in a long time.
Today we went in for a bone marrow biopsy. Not fun. First they numb you up with lidacane Then they stick a needle in your back right at the crest of your hip bone and bust through the bone and into the marrow and pull out a little chunk. The lidacane works for everything except when they hit the bone and the marrow and then it hurts. It went pretty well. I actually walked in to the appointment and walked all the way out as well. First time I have done without the wheel chair in a long time and it felt really good to be under my own power.
Tomorrow I have to go back down for a pulmonary function test. Not sure how that works. I have a feeling I would have got high scores this time last year though. I go back on Friday for my regular once a month Chemo session. Not looking forward to that but it is part of the deal.
Next week I have a couple of meetings scheduled down at Stanford. It is a 3.5 hour drive if the traffic is not bad. If it is bad.... It could be really ugly. Then the BMT process begins the first part of the week after next. I say process because that is what it is. I have an overnight in the hospital where they give me a chemo injection. Then I am turned loose for a couple of weeks where I give my self a daily injections of a white blood cell booster. Then I go back when the time is right to have the bone marrow and stem cells removed from my blood. That takes a couple of days and then I go home and rest for two weeks. Then that process starts over again.
It wont be until late August that I actually get the bone marrow transplant. At that point what they really are doing is giving me a lethal dose of chemo drugs with the idea of killing all of the bad cancer cells. Then they rescue me with the stem cells that they took out earlier. At that point I am in special clean medical apartments provided by Stanford. My immunity will be non-existent. I'll spend at least a month in there with the help of my mom (Granny) if not longer that all depends on how I recover.
If everything goes perfectly I will be symptom free at the end of that process. I will take another couple of months (they say 3-6) to recover. At the end of that I am really looking forward to going back to my normal life. Starting work again. Riding my bike. Roughhousing with my kids cuddling with my wife.
I have a feeling that this is the beginning of the end. We'll see.
Thursday, June 5, 2008
Game On
The Onclogist was eqaully unhappy with the latest labs. It is time to do soemthing different. He consulted with the doc at Stanford and they decided to go forward with the Bone Marrow Transplant. We got the call yesterday from Stanford telling us that was the case. They told us they would put a schedule together by the end of the week. It was in the Chickenhawks email by the end of the day.
Things are starting soon. We had hoped to pre-plan as much of this as we could but it is still going to be a last minute scramble. It is going to get really busy for us towards the end of this month. So here we go.
I am feeling excited to be moving forward and doing something other than waiting for drugs to work. I am also scared because the BMT does not sound like a walk in the park. It sounds pretty miserable really. But it is the best way too get back to healthy quickly that I can see so I am eager to get on with it. It is also going to be hard because I will be so helpless for such a long time. Not that that is much different than how I am now. Either way come the start of the TDF and I'll be working on the first parts of the BMT. It sounds like the process is going to take a few months all told.
Wish me luck.
Things are starting soon. We had hoped to pre-plan as much of this as we could but it is still going to be a last minute scramble. It is going to get really busy for us towards the end of this month. So here we go.
I am feeling excited to be moving forward and doing something other than waiting for drugs to work. I am also scared because the BMT does not sound like a walk in the park. It sounds pretty miserable really. But it is the best way too get back to healthy quickly that I can see so I am eager to get on with it. It is also going to be hard because I will be so helpless for such a long time. Not that that is much different than how I am now. Either way come the start of the TDF and I'll be working on the first parts of the BMT. It sounds like the process is going to take a few months all told.
Wish me luck.
Tuesday, June 3, 2008
New News
Doctor KT called last night. The new numbers are in on my kappa free light chains (the key measurement of cancer cells) The news is not great. They have gone down but only 100 points instead of the 400 points that they went down last month. We knew that there is no such thing as a trend with multiple myeloma. It is erratic on each person that has it has a different disease and responds differently to the treatment. This is frustrating. I was really hoping for more but it is what I get.
We go to meet with the oncologist this afternoon. I don't know if this new news will change his recommended treatment. I am thinking that is a possibility. It is also a possibility that they'll want to speed up the timing on the BMT. We'll see.
We go to meet with the oncologist this afternoon. I don't know if this new news will change his recommended treatment. I am thinking that is a possibility. It is also a possibility that they'll want to speed up the timing on the BMT. We'll see.
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