Looks like I have recovered from the infections and Pneumonia with the help of my home nurse (Lynn). This nurse thing got a little testy at times but we got through. It looks like she qualifies for caregiver status when I am done with the transplant, and I may have to start a new blog for that one.
On to the latest and greatest results and schedule...
We met with the infectious disease doctor Monday and got a good report, cultures were taken to confirm that the infections were gone and we have not heard otherwise. That meeting basically concluded the treatment from my oncologist and his team. I will reconvene with them after the transplant treatment in a few months.
On to Karmanos Cancer Center in Detroit where we had a full day of consults and tests on Thursday with the transplant team. First in line was the pharmacist who outlined all of the drugs, side effects, and more drugs to treat the side effects. Once I complete this whole transplant thing, watch for me on season 5 of celebrity rehab. Actually, he did a very nice job of showing us the time lines for drugs and why they administer the whats and when. This will not be the same chemo I got initially, and will be a tougher set of drugs to get ready for the transplant. I am scheduled to check in on Wed 12/8 and will get a day of pre-treatment and start the chemo on the 9th.
Once the chemo is completed, its a 6 day cycle, I will go straight to the transplant stage. The transplant itself takes only 20-30 minutes. This totally surprised us. I'm not sure what we thought would take place, but we didn't think it would be that quick. The transplant is essentially administered like a blood transfusion and then we wait for the good cells to grow...
From the pharmacist, we proceeded to the inpatient clinic where I had to get another bone marrow biopsy. Since I hadn't had one in about 3-4 weeks, it was time to assess where I am now in the process of recovery and if the Cancer cells have taken over. This was #10 and it provided the most entertainment of them all. As the nurse is preparing to do the biopsy I let her know that I have very hard bones, and she told me she has never had a problem (she did say she hoped she didn't jinx herself). After 15 minutes of having a needle in my hip and a lot of trying and trying, she had to call in the closer to get it done. Consequently, the doctor who finished the biopsy gave up on her attempt and started over. I'm not sure if this can be considered #11, but he did get it done, again with a lot of effort. I knew this one was going to make me pretty stiff for a couple days (and it has).
The last meeting of the day was with the transplant doctor (Dr. Uberti) to cover his latest thoughts and how he felt about the timeline. We had met with him a month a so ago for an introduction to the process, and it was probably the toughest meeting/discussion we've had to date. While we discussed the transplant process, we came away feeling like all we discussed were the risks and problems that could occur. Since that time, all of us have done a lot of reading and in doing so, you start to feel like they are trying to cover every possible scenario, and most of them are the things that could go wrong. In fact, not once does the literature reference transplant success. But, this meeting was far less formal and relaxed. Dr. Uberti and the coordinating nurse went through our latest records, hospital visits and the the timeline as established last week. His main concern right now is that I may have too much Leukemia in my body to go straight to transplant next week because I haven't had any chemo in the last few months and that I had the lung infection with the pneumonia. They want your health (relatively speaking of course) to be as clean as possible. The biopsy results will guide them in making this decision and those are due Monday or Tues.
IF I don't go straight to the transplant, it appears I will still be admitted for chemo (referred to as consolidation) which will bring the cancer back to a manageable level so that they can then let me recover a little bit and then, of course, give me the heavy dose of chemo for the transplant. (I'm sure another biopsy will be in order...)
In hoping the results are good and we head to the transplant on the 15th, we do know that the donor is a "perfect" match. There are a couple different ways of defining the criteria for a perfect match, but it was explained that in my case, the donor is 10 for 10 in the criteria they want to see. We asked what "perfect" means and they explained that 10 for 10 is equivalent to having a match from a sibling (remember, my brother Charlie was not a match). I think this eased (if they can be eased) our concerns a little bit.
You may be wondering where my head is in all of this... I guess I'm just ready for it to get moving again. We know all of the risks, but there really is no choice. I know all of the chemo side effects, and while they aren't any fun, I got through it once, so why not again (plus, I look pretty damn good bald, if I do say so my damn self). The part that scares us all with the transplant is the Graph Versus Host Disease (GVHD) which you are almost guaranteed to get. The odd thing about GVHD is that the doctors want some in you because it helps fight the bad cells, but too much can start to affect your organs, which is not so good. They think most of the complications from GVHD and other complications can be controlled with drugs, but then there are side effects from those... what a cycle.
More on GVHD here.... (if interested, it starts on page 5 of the recovery link below)
http://www.marrow.org/PATIENT/Survivorship_Ed/assets/pdfs/Survivorship_Treating_Complications.pdf
Overall though, they wouldn't be doing this if it didn't work, right?
In any event, I have a CT scan on Monday morning to have the lungs viewed and in conjunction with the biopsy results, I'll be able to post an update on Tues or Wed. If you have any questions, etc... feel free to email me or some of the family.
Thanks for all of the support and even supporting Lynn as she made it to bowling last month with a phenomenal average of 98 or something.
Saturday, December 4, 2010
Wednesday, November 24, 2010
Thanksgiving Eve
Another week of waiting is in the books but plenty of action to come in the next month. As I indicated in the last post, I am home and getting IV antibiotics daily to stave off the remnants of the infection and pneumonia from the hospital stay. I didn't feel very well when I got home (I think I used the word "blah") and that continued for a couple days, but eventually that feeling subsided and I have felt pretty good for the past 5-6 days. But, its always the fatigue that reminds me why I'm where I am at this point.
Lynn has taken over the administering the IV's every day after a crash course from the hospital outpatient nurse. Of course, I felt compelled to test her with the directions she was given for the IV and she barely passed the test (kidding). No major issues with getting the IV and its pretty routine now. I'll be on this medication through next Tuesday and then have a meeting with the infectious disease doctor to confirm everything is gone... another chapter down.
The nurse who came out to teach Lynn the IV process came back this week to check on my PIC line and change the dressing (this is a once a week process). She is a very talkative nurse and she caught me too early in the AM on Monday and I was a bit testy, I think. I was actually telling her how the nurses had changed the dressing in the office or hospital, but she had her own way. Her "way" ended up pulling the PIC line out of my arm another 3 inches. Ultimately, this isn't a big deal as long as they are just drawing blood and giving me antibiotics, but I can't get chemo through it any more.
Speaking of chemo, we had a meeting with my Oncologist today and covered the possible schedule ahead. A donor has been identified and the transplant team has been waiting to get further information back regarding the process from the donor side. Apparently, this donor could be from anywhere in the world and at this point, the location isn't given to the recipient. The donor always has the opportunity to back out of the process, but fortunately, we received word today that they are proceeding with the process and we can start assuming some dates and time lines. If the donor had not been found, I would be due for another round of chemo very soon as its been almost 3 months since I completed the initial treatment.
Looking ahead to next week, I will begin meeting with the transplant doctor at the Karmanos Cancer Center and effectively be passed on to their care for the transplant and recovery. My current doctor will stay abreast of the the progress, but as even he confirmed, this is what they do and do it very well. (On a quick side note, I will miss seeing my current doctor, he has been fantastic with me, my family and most important, he helps us manage the maze of questions and our emotions brilliantly). Eventually, I'll be back seeing him for aftercare treatment, but that will be well into 2011. If the donor process continues to progress correctly, I will be headed to the hospital on December 8 for a weeks worth of intensive chemo and scheduled for the transplant starting the 15th.
So.... after 3 months of trying to get better and waiting and waiting some more, we have a plan. It hits you straight in the face, but this is what we have been waiting for; direction.
If I haven't been posting enough updates, its only because there haven't been any or I don't think people reading want to hear about my slouching around while waiting. As we get more details, we will let everyone know, but for now, I think we (and everyone) should enjoy a great and traditional Thanksgiving. From our side, we'll be celebrating turkey day on Friday when all of the kids will be able to come over and share it with AC, Judy, Lynn and I. Jimmy just returned from college and all it does is bring back great memories of when I did the same some 20+ years ago.... a quick hello and out the door for catch up with friends. Oh to be 18 again... There will be plenty of football, food and family and that's the way it should be, even if its the Lions. Don't forget about THE game on Saturday where the Bucks look to make it 7 straight over UM. And for the southern Busse clan.... may UGA take care of business just once this year, I'll be pulling for them and may make a small wager on their behalf.
Last, I hope everyone has an awesome weekend and know that I am thankful for all of the support you have heaped upon us since this damn thing started... it is invaluable and reminds us all how important our family and friends are. If I can figure out how to attach the bone marrow process and how this thing will be working, I will attach it to a post this weekend....
Happy Thanksgiving to everyone!
Lynn has taken over the administering the IV's every day after a crash course from the hospital outpatient nurse. Of course, I felt compelled to test her with the directions she was given for the IV and she barely passed the test (kidding). No major issues with getting the IV and its pretty routine now. I'll be on this medication through next Tuesday and then have a meeting with the infectious disease doctor to confirm everything is gone... another chapter down.
The nurse who came out to teach Lynn the IV process came back this week to check on my PIC line and change the dressing (this is a once a week process). She is a very talkative nurse and she caught me too early in the AM on Monday and I was a bit testy, I think. I was actually telling her how the nurses had changed the dressing in the office or hospital, but she had her own way. Her "way" ended up pulling the PIC line out of my arm another 3 inches. Ultimately, this isn't a big deal as long as they are just drawing blood and giving me antibiotics, but I can't get chemo through it any more.
Speaking of chemo, we had a meeting with my Oncologist today and covered the possible schedule ahead. A donor has been identified and the transplant team has been waiting to get further information back regarding the process from the donor side. Apparently, this donor could be from anywhere in the world and at this point, the location isn't given to the recipient. The donor always has the opportunity to back out of the process, but fortunately, we received word today that they are proceeding with the process and we can start assuming some dates and time lines. If the donor had not been found, I would be due for another round of chemo very soon as its been almost 3 months since I completed the initial treatment.
Looking ahead to next week, I will begin meeting with the transplant doctor at the Karmanos Cancer Center and effectively be passed on to their care for the transplant and recovery. My current doctor will stay abreast of the the progress, but as even he confirmed, this is what they do and do it very well. (On a quick side note, I will miss seeing my current doctor, he has been fantastic with me, my family and most important, he helps us manage the maze of questions and our emotions brilliantly). Eventually, I'll be back seeing him for aftercare treatment, but that will be well into 2011. If the donor process continues to progress correctly, I will be headed to the hospital on December 8 for a weeks worth of intensive chemo and scheduled for the transplant starting the 15th.
So.... after 3 months of trying to get better and waiting and waiting some more, we have a plan. It hits you straight in the face, but this is what we have been waiting for; direction.
If I haven't been posting enough updates, its only because there haven't been any or I don't think people reading want to hear about my slouching around while waiting. As we get more details, we will let everyone know, but for now, I think we (and everyone) should enjoy a great and traditional Thanksgiving. From our side, we'll be celebrating turkey day on Friday when all of the kids will be able to come over and share it with AC, Judy, Lynn and I. Jimmy just returned from college and all it does is bring back great memories of when I did the same some 20+ years ago.... a quick hello and out the door for catch up with friends. Oh to be 18 again... There will be plenty of football, food and family and that's the way it should be, even if its the Lions. Don't forget about THE game on Saturday where the Bucks look to make it 7 straight over UM. And for the southern Busse clan.... may UGA take care of business just once this year, I'll be pulling for them and may make a small wager on their behalf.
Last, I hope everyone has an awesome weekend and know that I am thankful for all of the support you have heaped upon us since this damn thing started... it is invaluable and reminds us all how important our family and friends are. If I can figure out how to attach the bone marrow process and how this thing will be working, I will attach it to a post this weekend....
Happy Thanksgiving to everyone!
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