I know its been a week and I thought I would have updated this thing before now, but such is life.
I was able to come home this afternoon after 6 days in the hospital. I went in with the chest pains and had those dissipate for a day only to come back very hard the next day while Lynn, Mom and my Dr. were all in attendance. Both of the episodes were treated with heavy pain meds which had them subside fairly quickly. The best news of the week was that the pneumonia in my lungs must have been causing the pain as the nerve fibers went haywire. There was nothing associated with my heart.. In addition to the pneumonia, I grabbed a staph infection for good measure in my blood.
All of this meant more tests and more tests. The infectious disease team was treating me for the staph infection with antibiotics pretty much 24/7 for the week as they assessed the issue. We found out the cultures were negative today so the antibiotics can be cut back, but I will be on an IV from home for the next couple of weeks. We will have nurse visit to set us up with the treatment, IV set up and they will let us do the honors from home the duration.
While all of this was going on, the Dr. ruled out the option of straight chemo as the next step and we will be going to the transplant when the infections have cleared up. In prep for the transplant, I completed a battery of tests for the next stay... EKG, another CAT, pulmonary testing and plenty of blood. I don't think they will be wasting any time once the infection clears up and will go straight to the Karmanos Cancer Center in Detroit. The good news is that they have found a donor and have begun the process to have that sample verified. I'm not sure of the process, but in my conversation with the transplant coordinator, they have to have the donor come in for some additional testing. The donor is what is referred to as a "perfect match" which indicates they have met a set of criteria that is more superior than others. We'll try and get more details for that soon and pass along.
Been feeling kind of "blah" for the past few days and hope to get more energy back during the time at home. Thanks to all those who visited, called and sent messages. Looks like I'll be home for Thanksgiving, which is a big plus and then head into the next hospital the following week if the time line holds up (which they never do).
And last, maybe, just maybe Michigan can find a way to outscore Wisconsin this week while the Buckeyes attempt to handle Iowa on the road... of course, both could go the other way as well...
Tuesday, November 16, 2010
Wednesday, November 10, 2010
A Biopsy, the Monday Meeting (and an Unexpected Tuesday)
I think I may have mentioned that I am unofficially going for the bone marrow biopsy record over a 90 day period. Someone contact Guinness... and while you are talking to them, see if they know the guys from St. James Gate as well... And speaking...
OK, I started the previous paragraph in the middle of the 4th quarter of the Bengals game Monday night and was too annoyed to finish the blog post at the end of the game. So here it is Tuesday night (early Wed technically) and I am in the hospital again. This is a bit premature and unexpected as I developed some tightness in my chest this morning, and throughout the day it progressively got worse and by dinner time, Lynn brought me to the ER after consulting my doctor (As we were reminded during our weekly Monday appointment, I have had very few complications up to this point outside of the slow recovery from the initial chemo treatment).
I was seen pretty quickly in the ER and given morphine for the severe pain I had while breathing. Then I went through the tests, the chest X Ray, and the CT scan to find out the cause of the pain. I guess its a break when you are told you will be admitted with Pneumonia and not a blood clot. So here I am giving a long overdue update.
Rewind to last week.... as a result of my WBC's finally jumping to a much higher level, I did have another bone marrow biopsy to assess where I stand with the next set of treatment. The preliminary results of the latest (8th) biopsy showed slightly higher than 5% blasts. Final written reports will be in today and the team will consult on my next set of chemo. The choices are limited and if they blasts stay over 5%, the likelihood of another round of the induction chemo (which I went through all the way back in Sept) is high.
I have tried to stay away from making assumptions throughout the treatments, recovery, and next steps. I've tried to let the different sets of #'s guide the process and play out as it will. And if the #'s don't change, that would mean we are headed toward the bone marrow transplant, but first, the Pneumonia needs to be dealt with before any new treatment can be started.
I haven't mentioned the experimental protocol in a while, as the slow recovery has limited much of its influence over the past 6 weeks. Many of the bone marrow biopsies were previously driven by the protocol team, and the thought is that, yes, I will have one more biopsy this week for their assessment. As of November 1, the protocol team extended my participation by another 2 weeks. There was/is a chance that I will not be participating in the protocol based on the slow recovery over the past couple months. Within the protocol procedures, progress needs to be made over a certain period for my case to be considered valid, and we are right on the cusp of that timing. As you may recall, we (me or my doctor) do not know whether we are taking the actual drug or a placebo, nor will we for upward of 18 months (if I am still participating).
Over the past couple months, I think all of us in the family have been led to a false sense of security with how I have been feeling (which has been pretty good). Maybe security isn't the right word because we all knew the road map and that there are going to be some bumps on the way. We just haven't had that many. We all got used to me being in the "chair" while home where I worked or managed my horrendous fantasy football teams, as I drank Welch's grape juice in amazing quantities. But, being back in the hospital the way I came in today hits you straight in the face. Thanks go out to my parents for being around to help Lynn and I cope with our daily routine (see above, mine was not that exiting, grape juice and all). I'll try and post more regular updated this week as we get more information and direction, but for the past couple months, the mood was definitely much lighter.
Again, many thanks to all who have continued to support our family with dinners and thoughtful assistance, it has not gone unnoticed. We hope to touch base with everyone along the way.
And last, for those of you who know the Mompers, keep them in your thoughts as Mark's wife Karen recovers from some surgery as she prepares for her own bone marrow transplant.
OK, I started the previous paragraph in the middle of the 4th quarter of the Bengals game Monday night and was too annoyed to finish the blog post at the end of the game. So here it is Tuesday night (early Wed technically) and I am in the hospital again. This is a bit premature and unexpected as I developed some tightness in my chest this morning, and throughout the day it progressively got worse and by dinner time, Lynn brought me to the ER after consulting my doctor (As we were reminded during our weekly Monday appointment, I have had very few complications up to this point outside of the slow recovery from the initial chemo treatment).
I was seen pretty quickly in the ER and given morphine for the severe pain I had while breathing. Then I went through the tests, the chest X Ray, and the CT scan to find out the cause of the pain. I guess its a break when you are told you will be admitted with Pneumonia and not a blood clot. So here I am giving a long overdue update.
Rewind to last week.... as a result of my WBC's finally jumping to a much higher level, I did have another bone marrow biopsy to assess where I stand with the next set of treatment. The preliminary results of the latest (8th) biopsy showed slightly higher than 5% blasts. Final written reports will be in today and the team will consult on my next set of chemo. The choices are limited and if they blasts stay over 5%, the likelihood of another round of the induction chemo (which I went through all the way back in Sept) is high.
I have tried to stay away from making assumptions throughout the treatments, recovery, and next steps. I've tried to let the different sets of #'s guide the process and play out as it will. And if the #'s don't change, that would mean we are headed toward the bone marrow transplant, but first, the Pneumonia needs to be dealt with before any new treatment can be started.
I haven't mentioned the experimental protocol in a while, as the slow recovery has limited much of its influence over the past 6 weeks. Many of the bone marrow biopsies were previously driven by the protocol team, and the thought is that, yes, I will have one more biopsy this week for their assessment. As of November 1, the protocol team extended my participation by another 2 weeks. There was/is a chance that I will not be participating in the protocol based on the slow recovery over the past couple months. Within the protocol procedures, progress needs to be made over a certain period for my case to be considered valid, and we are right on the cusp of that timing. As you may recall, we (me or my doctor) do not know whether we are taking the actual drug or a placebo, nor will we for upward of 18 months (if I am still participating).
Over the past couple months, I think all of us in the family have been led to a false sense of security with how I have been feeling (which has been pretty good). Maybe security isn't the right word because we all knew the road map and that there are going to be some bumps on the way. We just haven't had that many. We all got used to me being in the "chair" while home where I worked or managed my horrendous fantasy football teams, as I drank Welch's grape juice in amazing quantities. But, being back in the hospital the way I came in today hits you straight in the face. Thanks go out to my parents for being around to help Lynn and I cope with our daily routine (see above, mine was not that exiting, grape juice and all). I'll try and post more regular updated this week as we get more information and direction, but for the past couple months, the mood was definitely much lighter.
Again, many thanks to all who have continued to support our family with dinners and thoughtful assistance, it has not gone unnoticed. We hope to touch base with everyone along the way.
And last, for those of you who know the Mompers, keep them in your thoughts as Mark's wife Karen recovers from some surgery as she prepares for her own bone marrow transplant.
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