Pretty tired after the transplant, but most of that is because of the drugs they gave me for the prep and post transplant. A pretty large dose of Benedryl and a couple others had me out for a while on Thurs.
The original transplant was scheduled for Wed evening, but we were notified that a flight delay was going to push the procedure back until Thurs AM. Obviously, it was not a local match. They don't tell you where or who is the donor, but I heard from another patient today that one of the donors in the past couple days had come from Germany. If it was mine, who knows, but I'll play the rumor game for now.
While it is probably considered a relatively uneventful procedure (it is just like a transfusion), it had me pretty uncomfortable while it was taking place. Serious nausea feelings and a headache to go with a very strange hot sensation in my upper torso and tightness in the same area. It was pretty weird to say the least.
So, I guess my new blood type (AB positive) has commenced and we now wait out the merging with my system and any side effects for a few weeks. As I mentioned before, I'm just tired. To go with that, my bed is not the most comfortable and its making my lower back sore. Its a good thing I'm so young and in good shape (sarcasm). I am starting to feel the mouth sores coming on and could do without those, but I am taking all the precautions they are providing (brushing teeth and the salt water rinse). The mohawk is still intact and probably won't lose the hair for a week or 2, and I'll need to, I didn't count on keeping it.
That's all for now, and praying for a quick recovery to maybe be home around New Years. Thanks for all the notes and support.
I guess I get another "birthday," as mentioned and confirmed by many. Lynn, pay attention...
Friday, December 17, 2010
Tuesday, December 14, 2010
Rest Day
Tonight I complete the rest day after getting 5 days of chemo in preparation for the transplant that will take place on Wednesday. As I just finished typing an email to friends, I referred to it as the day I get a new lease on life, and I got caught up in writing that as its the first time it dawned on me. And it is.
Throughout this whole ordeal, I had seen it as some type of "challenge" I had to get through, but no more and no less. I don't think the seriousness has ever escaped me, but the finality of what we (and I do mean "we") have been working toward never hit me as much as it had today. And the "we" is all of you who have supported me through messages on the blog, emails from people I haven't met yet, the time and effort of many to make meals and support our schedule, my extended family, my kids notes that they send or whiteboard when they see me, my co-workers, my friends visits and words of well "friends", and most of all my family (Lynn, Charlie, Rhea, Mom and Dad). Their lives have been turned upside down and they have made it their job to make me better, and I can't thank them enough.
I had to let you all know how much appreciation I have for it all... amazing.
Just to give you a sense of the last week, I checked in last Wed to the 10th floor of the Karmanos Cancer Center high above Detroit. I have a great view of Motor City Casino which is there just to make me itch a little bit, The 10th floor is dedicated to transplant patients and we are all in some stage of pre or post transplant. You find all kinds here, young (me) up to some patients in their 70's. But, we are all getting a transplant. I've met a couple people going through their second type of Cancer treatment, one had non Hodgkins Lymphoma 10 years ago and the chemo he received from that experience has probably caused the Leukemia this time and the need for a transplant. A couple other have had a transplant with their own blood previously and it didn't work out, so they are here to go again with unrelated donors. We all have some type of story so it doesn't matter how we get here, only that we are.
The chemo started last Thurs and just like last time, no exciting process, just hook up and go. For the fist 3-4 days, I really felt pretty good all things considered. I had the pain from my catheter being put in and was getting pain meds for that in addition to about 5-6 other drugs designed to prep me for transplant. Because one of the side effects from one of the chemo drugs is seizures, I was being given a drug called Dilantin to fight against that effect. My Dilantin level got low for a day and they gave it to me in IV form one afternoon and that was kind of a fun experience since the side effect from Dilantin is dizziness. I got in in a nice way for about an hour or 2. Outside of that, I have drugs that will protect my kidneys, liver and everything else they can think of... it feels like a lot of pills, and it is. They say "just wait" for the amount of pills I will be taking by the time I get home. Oh well.
Over the weekend, I was being treated by a doctor from Japan and a doctor from Thailand and we had a discussion about sushi. For whatever reason, I engaged them in the conversation and asked where the best was to be found in Detroit. So for what its worth, they settled on One World Market in Novi (near Gus O) and Cherry Blossom, also in Novi at West Oaks Mall.
So how you feeling Shoop?... thanks for asking. The past couple days have been a little rougher as the chemo has taken hold. I have felt weak and nauseous for most of them, but still haven't acted out on the nausea to this point. Feeling like that humbles you and makes you yearn for full strength even though you know there is more to come throughout the treatment. They can give you shots of Adavan to temporarily take care of it, but you know its coming back.
Keeping positive, I hope to count this last week as the first of 3 that I will be here. I realized even this afternoon as Lynn and I napped... these beds really suck. Most of my stays in the hospital have been for a week or so, and knowing there are at least 2 left isn't as comforting, but its all for a great fight! I'll do my best to keep eating, but not at the times they bring the food. On the weekend they were bringing dinner at 4:30 as advertised, so I just waited and reheated. Breakfast is tough because they bring it at 7:00 (ha!) and I am not even close to being ready to eat. Lots of leftovers from home have kept the schedule more regular.
That's enough for tonight, and the big day is tomorrow, so given the energy, I'll try and update in a day or so.
God Bless all.
SS
Throughout this whole ordeal, I had seen it as some type of "challenge" I had to get through, but no more and no less. I don't think the seriousness has ever escaped me, but the finality of what we (and I do mean "we") have been working toward never hit me as much as it had today. And the "we" is all of you who have supported me through messages on the blog, emails from people I haven't met yet, the time and effort of many to make meals and support our schedule, my extended family, my kids notes that they send or whiteboard when they see me, my co-workers, my friends visits and words of well "friends", and most of all my family (Lynn, Charlie, Rhea, Mom and Dad). Their lives have been turned upside down and they have made it their job to make me better, and I can't thank them enough.
I had to let you all know how much appreciation I have for it all... amazing.
Just to give you a sense of the last week, I checked in last Wed to the 10th floor of the Karmanos Cancer Center high above Detroit. I have a great view of Motor City Casino which is there just to make me itch a little bit, The 10th floor is dedicated to transplant patients and we are all in some stage of pre or post transplant. You find all kinds here, young (me) up to some patients in their 70's. But, we are all getting a transplant. I've met a couple people going through their second type of Cancer treatment, one had non Hodgkins Lymphoma 10 years ago and the chemo he received from that experience has probably caused the Leukemia this time and the need for a transplant. A couple other have had a transplant with their own blood previously and it didn't work out, so they are here to go again with unrelated donors. We all have some type of story so it doesn't matter how we get here, only that we are.
The chemo started last Thurs and just like last time, no exciting process, just hook up and go. For the fist 3-4 days, I really felt pretty good all things considered. I had the pain from my catheter being put in and was getting pain meds for that in addition to about 5-6 other drugs designed to prep me for transplant. Because one of the side effects from one of the chemo drugs is seizures, I was being given a drug called Dilantin to fight against that effect. My Dilantin level got low for a day and they gave it to me in IV form one afternoon and that was kind of a fun experience since the side effect from Dilantin is dizziness. I got in in a nice way for about an hour or 2. Outside of that, I have drugs that will protect my kidneys, liver and everything else they can think of... it feels like a lot of pills, and it is. They say "just wait" for the amount of pills I will be taking by the time I get home. Oh well.
Over the weekend, I was being treated by a doctor from Japan and a doctor from Thailand and we had a discussion about sushi. For whatever reason, I engaged them in the conversation and asked where the best was to be found in Detroit. So for what its worth, they settled on One World Market in Novi (near Gus O) and Cherry Blossom, also in Novi at West Oaks Mall.
So how you feeling Shoop?... thanks for asking. The past couple days have been a little rougher as the chemo has taken hold. I have felt weak and nauseous for most of them, but still haven't acted out on the nausea to this point. Feeling like that humbles you and makes you yearn for full strength even though you know there is more to come throughout the treatment. They can give you shots of Adavan to temporarily take care of it, but you know its coming back.
Keeping positive, I hope to count this last week as the first of 3 that I will be here. I realized even this afternoon as Lynn and I napped... these beds really suck. Most of my stays in the hospital have been for a week or so, and knowing there are at least 2 left isn't as comforting, but its all for a great fight! I'll do my best to keep eating, but not at the times they bring the food. On the weekend they were bringing dinner at 4:30 as advertised, so I just waited and reheated. Breakfast is tough because they bring it at 7:00 (ha!) and I am not even close to being ready to eat. Lots of leftovers from home have kept the schedule more regular.
That's enough for tonight, and the big day is tomorrow, so given the energy, I'll try and update in a day or so.
God Bless all.
SS
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