Here we go...
Lots to update you on the past few days and by the title above, I am on schedule and just got hooked up to my first dose of chemo... important update, the TV guy just visited and was able to work his magic and get the Playstation 3 hooked up, more later... This chemo treatment will be very different from the initial induction chemo that I received back in September. The September treatment was administered 24/7 for a week while this one will consist of 2 drugs (Fluderavine and Busolphine sp?) that only take 4 hours per day. But, the other side of it is that these 2 are more potent than the initial treatment. I'll be on them for 5 days, take a 1 day break and go directly to transplant.
Earlier in the week we had a couple of procedures; a CT scan to look at my lungs and organs again from the Pneumonia and on Tuesday, I had the surgery to put in the catheter that will be used to put the drugs in me or take blood out of me. Previously, I had a "PIC" line in my arm which served the same function, however, that was removed and I have upgraded to the catheter with 3 lines. This one is running out of my upper let chest area. Putting this one in required surgery. While overall tolerable to a degree (except when sleeping), my left shoulder area is very sore since the surgery and I'm told it will clear up in another day or so. I am taking some pain medication when the area throbs or becomes pretty agitated.
All of this led to Wednesday and check in at Karmanos. No reason to get there too early and a bed wasn't available until the afternoon regardless... we arrived about 3:00 to the palatial estate that is otherwise known as room 11 on the 10th floor. This floor is dedicated to bone marrow transplant recipients and and they have an area for bone marrow donors. Because everyone on the floor effectively has very little, if any, immune system throughout the process, this floor has its own air filtration system to minimize the air born bacteria that could affect the patients. An additional benefit of the system is that the patients don't have to wear masks when walking outside their rooms. It may seem minimal, but it is some type of small freedom we get on the floor.
Because everyone on the floor is in for a longer stay than most patients, the nurses are assigned more specifically to patients. While they all work the nursing schedule, whether it be 8 or 12 hour shifts, I will essentially have the the same nurses throughout my stay, at least that's the idea that my primary nurse outlined.
The food service here is a little different than the service at the previous hospitals. They have a small menu of items to choose from for the snack menu, but they also offer 3 meals a day that are an either/or type of choice. I didn't know they would be delivering food this morning and when the service came at 7:00 am, I probably wasn't the most friendly patient. They don't exactly help things by waking you up at 3:00 and 4:30 am to take vital signs and draw blood. I was pretty happy when one of my choices for dinner was Salisbury steak, seriously. It reminds me of the TV dinners we used to eat as kids when the parents were going out... will give a full report if it lives up to expectations or not. Here is the best part of the whole meal thing... you get served dinner between 4:30 and 6:00. I can't help but think of Del Boca Vista. Maybe I'll run for 10th Floor Mayor while I'm here.
Now that the Playstation 3 is hooked up, I have made a commitment to watching less TV... kidding. Actually, I need to improve my hand/eye coordination so that when I get to play golf again, I still have some sense of the game. What better way than video games? One of the nurses on the floor told me I should be playing Call of Duty (and I might), but I feel obligated to get the Bengals out of the 2-8 hole I put them in on the Madden football season I started a week ago. 10-15 years ago, these games would be a piece of cake to play and progressively dominate, but now... I'm a chump to the kids, someone they can string along in the games and win at any point. I haven't played Michael or Jimmy lately but I know the result before we even start. I tried to get them into the Tiger Woods golf, but it didn't stick (probably too little action).
I think I mentioned that my new doctor was Dr. Uberti. As it turns out, Uberti is one of the Co-Directors (co-doctors) on the floor and each of them makes rounds for 2 weeks at a time. Currently, the other doctor is making the rounds and his name is Dr. Ratanatharathorn. Thank heaven he goes by his first name. (Just thinking that his family should have taken a cue from many of the Europeans who moved to the US and shortened their name to make it easier... Dr. Ratan sounds nice). We met him last night and he was pretty darn cool and knew all about my case. He answered all of Mom's questions (critical for anyone to gain her confidence) and came back this morning to check in on me before the chemo started. Between he and Uberti, I'm very confident in the team they have together for treatment.
Thanks for asking... here's an update on my health. Obviously we know I am here to get a transplant, and that has not changed. Some positive news is that the latest bone marrow biopsy revealed that my Leukemia had not increased at all in the last month, essentially meaning that I have found a state of remission. However, my condition is still such that I need the transplant as I have what is called Myelodysplasia. Essentially this is very good indicator of bad cells and lets us know that even if I am considered in remission, the Leukemia is coming back unless they do the chemo and transplant. The doctors have said that this is a better situation than having my Leukemia counts much higher, even though it doesn't change the treatment. They like the fact that the counts are low and believe that the chemo will kill off the remainder of the bad cells before treatment.
Many people have asked about the donor process (as have we) and what we know is that it is a male and the blood stem cells are not here yet. They try to bring the transplant in the same day, depending on where the donor is located. Currently, my blood type is B positive, when we get through with the transplant, my blood type will be that of the donors', AB negative. It makes sense given his cells will be the ones growing, but I would never have guessed that one of the qualifications for transplant wouldn't be blood type, but it actually has no bearing on the "match."
Enough for now... the treatment has started and in a way, I have no idea what to expect (even though I've gone through chemo before). It seems like a long time ago since the diagnosis, and as always, we appreciate all of the support from everyone. My hope is to be home by the New Year (it is possible) and watching the bowl games on the big screen (yes, the TV is pretty bad here). And those of you wondering, the bowl pool will be out this weekend, so start studying the games.
Thursday, December 9, 2010
Saturday, December 4, 2010
T Minus 5 (We Think)
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.
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.
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