About my little journal post about my issues form a few days ago. . .
Apparantly, according to a Bone Marrow Transplant newsletter I received today, all of that shit I'm going through right now is completely normal and expected.
Well, fuck. . . I don't remember anyone mentioning that before.
It does help, just a little, to know that I'm not going out of my mind. Well, I AM going out of my mind, and it's expected, so I'm okay with it. . . I think.
It doesn't complicate anything, it just clarifies. Like butter. Like clarified butter.
Tuesday, December 11, 2007
Monday, December 10, 2007
December 10th, 2006 - looking back at Day +2
Still moving forward, though slugglishly.
My eyes burn, my lips are still peeling, I am barely able to keep much of anything besides corn flakes down. My nose feels pinched into my eyes and I'm not allowed to blow my nose of brush my teeth.
Today, I am feeling worn down. I am just drinking sips of water with an occasional nibble on a cracker, but even that gets to be too much. I really want to go take a walk, and I probably will, though the miracle will be a couple laps - far from the mile I'd like to walk.
Concentration is slipping, too. Could be from all the interruptions. Best part of yesterday was sitting and listening to music for a few hours, letting myself drift to sleep.
I don't want this little funk to blow into a full grown malaise.
My eyes burn, my lips are still peeling, I am barely able to keep much of anything besides corn flakes down. My nose feels pinched into my eyes and I'm not allowed to blow my nose of brush my teeth.
Today, I am feeling worn down. I am just drinking sips of water with an occasional nibble on a cracker, but even that gets to be too much. I really want to go take a walk, and I probably will, though the miracle will be a couple laps - far from the mile I'd like to walk.
Concentration is slipping, too. Could be from all the interruptions. Best part of yesterday was sitting and listening to music for a few hours, letting myself drift to sleep.
I don't want this little funk to blow into a full grown malaise.
Sunday, December 9, 2007
December 9th, 2006 - blog entry
I can't eat more than a handful of food without feeling nausea and my head feels very clogged. I made the mistake of blowing my nose, gently mind you, and all that came out were rivulets of blood choked mucous. Can't do that again, my platelets are really too low to mess around.
I've been thinking about life forward and how different it's going to be, how I'm going to have to adjust, and even create, my own new normal. Commas, wow. I'm not feeling very well right now, with the queasiness and stuffiness and fatigue, and the next 10 - 14 days promise to be difficult. I am being optimistic with saying 10-14 days of hell. In fact, I'm looking at a recovery that will take much longer than I ever really expected. I suppose it was just me telling myself that it really wouldn't be all that bad before I returned to a normal life. The next 6 months to a year will be very trying, and the time after that an unknowable. But it's really always been like that - unknowable.
I don't know how well I'll be feeling in the next couple of days for updates, but I'll try to let you all know what's happening. I'm going to take a nap right now.
December 8th, 2006 - journal entry from a hospital bed
Premeds for a 10:30 infusion transplant.Waited. Slept.
Premeds again around 2:00
Started infusion around 3:30.
Slept. Peed. Was visited by family.
Still transfusing the bag of marrow. Probably until 4 AM.
Tired and full of fluid.
December 8th, 2007 - note from donor
Didn't get a chance to post yesterday.
A note I received from my donor when I was home for a week or so. I typed it in as was written from him/her. Dated December 7th, 2007.
Dear Friend/Receipient,
It is with great pleasure that I write you this card. It has been such a long-awaited climax to this journey of donating my marrow to you in hopes that it will give you a new chance at a long, healthy, prosperous life. It is the prayer of myself and my family that the transplant will make a difference in your life and allow you the opportunity to live a long life as God has intended for you. I would really enjoy the chance of meeting you one day. Please remember you are in my prayers. Hopefully we will meet one day in the near future. Until then, be in good health!
With Warmth, Hope, and Prayers,
Your Friend and Donor
[other panel reads]
Merry Christmas and Happy new Year! May 2007 bring you love, happiness and many years of living in good health!
A note I received from my donor when I was home for a week or so. I typed it in as was written from him/her. Dated December 7th, 2007.
Dear Friend/Receipient,
It is with great pleasure that I write you this card. It has been such a long-awaited climax to this journey of donating my marrow to you in hopes that it will give you a new chance at a long, healthy, prosperous life. It is the prayer of myself and my family that the transplant will make a difference in your life and allow you the opportunity to live a long life as God has intended for you. I would really enjoy the chance of meeting you one day. Please remember you are in my prayers. Hopefully we will meet one day in the near future. Until then, be in good health!
With Warmth, Hope, and Prayers,
Your Friend and Donor
[other panel reads]
Merry Christmas and Happy new Year! May 2007 bring you love, happiness and many years of living in good health!
Friday, December 7, 2007
December 7th, 2006
A year ago my donor (still anonymous), spent several hours in a hospital bed, letting blood and marrow aphoerese into a bag. Technicians prepped the marrow (it was in a very large bag) to deliver to me on the eighth.
I've yet to meet or thank my donor, but upon my next visit to HUMC, I will try to find out his/her identity. He/she has given me another year of life to be with my family and friends, and hopefully many years to come. I owe this person more than I could possibly give for donating life to me.
I am extremely humbled by acts of gratitude such as this and I need to be more mindful of such gifts. It has been a long year from last December 7th and 8th, when I received my final chemotherapy and the ATG (rabbit serum) that sent me into shock. Recovery has gone well physically, but emotionally and mentally, I'm not quite on track.
I consider December 8th my new birthday, or re-birthday, as it has given me yet another chance to keep living disease free. I get to spend a lot more time with my wife, my son, and very soon two more sons. It really is a blessing to have such thoughtfulness and giving around you, even without getting into any religious mumbo-jumbo, and I will always be thankful for what I have. While I may wish for more, I know how much less there could be. I may be financially strapped, but I have learned to live richly, and to live well with what I have.
I want to extend a thank you to all of you, my "real" firends and my "Electronic" friends, for the support, encouragement, and laughs at my bad jokes over the past year. I could not have gotten through it without you.
So, here's to another journey to another December 8th; may we all be healthy and happy for those passing and packed 366 days.
I've yet to meet or thank my donor, but upon my next visit to HUMC, I will try to find out his/her identity. He/she has given me another year of life to be with my family and friends, and hopefully many years to come. I owe this person more than I could possibly give for donating life to me.
I am extremely humbled by acts of gratitude such as this and I need to be more mindful of such gifts. It has been a long year from last December 7th and 8th, when I received my final chemotherapy and the ATG (rabbit serum) that sent me into shock. Recovery has gone well physically, but emotionally and mentally, I'm not quite on track.
I consider December 8th my new birthday, or re-birthday, as it has given me yet another chance to keep living disease free. I get to spend a lot more time with my wife, my son, and very soon two more sons. It really is a blessing to have such thoughtfulness and giving around you, even without getting into any religious mumbo-jumbo, and I will always be thankful for what I have. While I may wish for more, I know how much less there could be. I may be financially strapped, but I have learned to live richly, and to live well with what I have.
I want to extend a thank you to all of you, my "real" firends and my "Electronic" friends, for the support, encouragement, and laughs at my bad jokes over the past year. I could not have gotten through it without you.
So, here's to another journey to another December 8th; may we all be healthy and happy for those passing and packed 366 days.
Wednesday, December 5, 2007
Ugh - stupid Happy Holidays vs. Merry Christmas debate reared again. . .
To which I respond - "Get the Hell off of my lawn you damn kids!"
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