So, let me ask you: How many of you thought I could actually "take it easy"?
My way of taking it easy means barbequeing, fishing and golfing. Enough, actually, to make up for a half of a year of inactivity. My golf game is getting back to where I was last year, my fishing skills are back to "top Fisherman" status and my barbeque skills, well, for those who have had the opportunity to taste my efforts in the past, my skills have not diminished at all. in fact they may have increased, what with my newly enhanced taste buds. You see, ever since my transplant, perhaps since my release from the hospital after the first go-round, my sense of taste and smell seems more acute than ever. Everything tastes new, smells are far more distinctive than I can remember and I take great enjoyment from grabbing these things as new experiences and enjoying the hell out of them.
I'm enjoying my freedom from the clinic as well. Oh man, now, I genuinely liked the medical staff and they sure made my treatments as pleasant as possible, but the freedom of schedule and freedom from just being in a hospital environment is a great benefit. Physically by eliminating contact from the unhealthy and being home. Mentally the effect cannot be mathematically calculated. Maybe some wizard or soothsayer can tell you the true value of mental happiness gained from a bit of hospital freedom, but I surely can not.
I've been taking this time I have now and living as if I am retired. But it's exhausting! I do enjoy putting myself at the edge of limits and stretching those limits, and that is what I'm doing now: bringing my limits back to those you would expect from a mainly healthy dude around my age. What I am seeing is that I am making myself stronger than I was before, but the path is slow and patience must be a factor. Walking more than 6 miles tires me these days, but I can walk! I try to make myself sweat from physical exertion at least once per day.
I have been making plans to get back to work soon, and I am really looking forward to it, for I'd like to see my life return to normal adventures. Too much to ask? I think not.
Chickenfest, for those who missed it, was a blast. A great party, a great way to return to my (semi)normal self and get on doing what I do best: Have fun!
in two years, there will be another one. Make your plans now. As for me, I've got a golf game to get ready for, just as soon as I re-spool this fishing reel. It's hard work living like you want to!
Monday, September 13, 2010
Thursday, August 19, 2010
Maybe I should lay off the gas pedal.
in every stage of my recovery (am I even allowed to call it recovery if I am not recovered yet?) I have pushed my doctors to allow for me to get back to being normal as fast as possible. I pushed to get the tubes out of me once I woke up from my little coma. I then pushed the nurses to let me walk on my own and get on the stationary bike to regain my strength. I pushed to get that chest tube out. I pushed the whole medical team to let me come home back in February a mere three weeks after a complete systems failure. I pushed them to take the trach tube out of my neck. I pushed again and again after my transplant, trying to get out of the hospital the second time. Then I pushed some more to get my Hickman centerline out well before it was expected. Now, things are seemingly normal, and I can't stop pushing my poor doctor some more: When can I go back to work? When can I start getting my immunization shots? When can I do yardwork again? When can attend a rockshow? A Baseball game? When can I drink beers? If I can't swim, can I wade? When can I hang out with kids again? When can I fly? ride my bike? take the "L"? Take the bus?
I feel like a child who broke his leg in the middle of summer and just wants to go outside and just play, man.
I've thought this through this past week, since taking it in and having a grand birthday, seriously just happy to share a room with superb friends and laughs until we are all wiped out from the good time. I'm going to take some time and relax from all my pushing now. i'm going to enjoy a summer month of activity light enough to call quality exercise for senior citizens, but nothing more strenuous than that. I'll learn a new skill, like playing guitar, something that I can create with and have fun, without feeling like I'm just passing time. By the way, I received a guitar for my birthday from a very generous friend and I now have the tools to play in a creative manner.
i've found that it is easier now to create since my mind is active again. I think that is what hurt the most; not being able to think in the manner that I have grown quite used to. It hurts being stupid about things that used to come naturally, you know? Like when I had to relearn how to walk, I had to relearn how to use my brain but that took longer. Now, before i can run physically, i can run mentally. Capice? I really like to run mentally. the timing of this couldn't come at a better time, for baseball playoffs are approaching! I kid, because we all know the Cubs are "Completely Useless By September", especially this year. I won't deny rooting for the White Sox, but those clowns are playing an awful lot like the Cubs lately. I still watch both teams, dammit, right down to the end.
So here I am, looking at the calendar and realizing that I am only four months out of transplant. My blood counts are slowly rising, s-l-o-w-l-y r-i-s-i-n-g, so i will chill, listen to Dr. Artz' advice and listen to my body, and start getting comfortable with a daily routine, and enjoying that routine. I will mark the calendar for a return to work at six months out from transplant and enjoy every moment of the time in between, trying not to focus on what lies ahead, but instead focusing on the details of every day, every hour, every minute, and revel in every sunrise.
I really am just happy to be alive, amongst friends and healthy.
I think we all ought to feel that way, but I understand if somedays it's hard to realize what is truly important and what is really small potatoes.
Oh and please feel welcome to enjoy Chickenfest with all of us mad fools. Life is meant to be lived and let us live heartily with many variations of poultry cooking goodness. Everyone is welcome, come celebrate!
I feel like a child who broke his leg in the middle of summer and just wants to go outside and just play, man.
I've thought this through this past week, since taking it in and having a grand birthday, seriously just happy to share a room with superb friends and laughs until we are all wiped out from the good time. I'm going to take some time and relax from all my pushing now. i'm going to enjoy a summer month of activity light enough to call quality exercise for senior citizens, but nothing more strenuous than that. I'll learn a new skill, like playing guitar, something that I can create with and have fun, without feeling like I'm just passing time. By the way, I received a guitar for my birthday from a very generous friend and I now have the tools to play in a creative manner.
i've found that it is easier now to create since my mind is active again. I think that is what hurt the most; not being able to think in the manner that I have grown quite used to. It hurts being stupid about things that used to come naturally, you know? Like when I had to relearn how to walk, I had to relearn how to use my brain but that took longer. Now, before i can run physically, i can run mentally. Capice? I really like to run mentally. the timing of this couldn't come at a better time, for baseball playoffs are approaching! I kid, because we all know the Cubs are "Completely Useless By September", especially this year. I won't deny rooting for the White Sox, but those clowns are playing an awful lot like the Cubs lately. I still watch both teams, dammit, right down to the end.
So here I am, looking at the calendar and realizing that I am only four months out of transplant. My blood counts are slowly rising, s-l-o-w-l-y r-i-s-i-n-g, so i will chill, listen to Dr. Artz' advice and listen to my body, and start getting comfortable with a daily routine, and enjoying that routine. I will mark the calendar for a return to work at six months out from transplant and enjoy every moment of the time in between, trying not to focus on what lies ahead, but instead focusing on the details of every day, every hour, every minute, and revel in every sunrise.
I really am just happy to be alive, amongst friends and healthy.
I think we all ought to feel that way, but I understand if somedays it's hard to realize what is truly important and what is really small potatoes.
Oh and please feel welcome to enjoy Chickenfest with all of us mad fools. Life is meant to be lived and let us live heartily with many variations of poultry cooking goodness. Everyone is welcome, come celebrate!
Tuesday, August 3, 2010
DAY 100 !!! - August 4th
Today marks the magical day #100. Hooray! this day is only statistically important because most people, if they are to get a serious blowback from stem cell transplant, have their hardest battles inside the 100 day mark.
Now, I'm not out of the woods yet and still am operating on an infantile immune system, but I'm getting stronger all the time and feeling more and more like myself as the summer wanes. I've had issues only on back-to-back strenuous days and have learned to plan my weeks better. i've regained my skills in the kitchen and can manuever just as well as I ever did.
The body is something that has come along because I've focused on being healthy, eating well and getting proper exercise. My mind is now getting into shape and I'm having fewer and fewer occasions of 'cancer brain' and find my wits returning and my mind regaining memory and details. Still, i get moments when I forget what the hell I was doing as I walk into a new room, much like an aged person.
Of course I am getting older, but this week, getting older is something for me to celebrate. Remember way back in January when the odds of me getting older were slim? January seems like a lifetime ago to me. So many minutes I spent looking at the ceiling in the hospital just thinking and willing myself to get better, never looking at bad news at set backs, just looking forward to my next healthy milestone. Such a long time ago. So many dreams ago, so many hurdles and short-term goals ago, I remember so foggily my entrance to the emergency room, doubled over in pain and now, I feel great and look physically, at least to myself, better than I did in December. Better than I have in quite a few years. So this Friday's anniversary of another trip around the sun, another count of sunrises, all of them gifts, will feel special to me. Special like a true present, a real gift to myself.
My current issues are mainly financial, with not working and trying to keep on top of all my medicines, trying to re-arrange some bills and mainly just staying afloat. Just day-to-day life in this economy, I'm learning.
My medical update: the last bone marrow biopsy (jeez, am I the only guy who gets hungry thinking about his own bone marrow?) showed all new cells, no bad blood, and zero leukemia. I recall Dr. Odenike telling me there was a chance we had to cure cancer, and i believed her. I didn't doubt her one bit and now it seems that is case. A truly miraculous turn of events and a tremendous achievement by all of the medical staff at U of C. Workers of miracles, them peoples.
I'll rap at you folks after the weekend; I've got some more contemplating to do for a day or two, then it's down to less serious matters and rejoicing in the life I been given. Like your clocks up and we'll all raise a toast at 7:35pm CST on Friday.
Now, I'm not out of the woods yet and still am operating on an infantile immune system, but I'm getting stronger all the time and feeling more and more like myself as the summer wanes. I've had issues only on back-to-back strenuous days and have learned to plan my weeks better. i've regained my skills in the kitchen and can manuever just as well as I ever did.
The body is something that has come along because I've focused on being healthy, eating well and getting proper exercise. My mind is now getting into shape and I'm having fewer and fewer occasions of 'cancer brain' and find my wits returning and my mind regaining memory and details. Still, i get moments when I forget what the hell I was doing as I walk into a new room, much like an aged person.
Of course I am getting older, but this week, getting older is something for me to celebrate. Remember way back in January when the odds of me getting older were slim? January seems like a lifetime ago to me. So many minutes I spent looking at the ceiling in the hospital just thinking and willing myself to get better, never looking at bad news at set backs, just looking forward to my next healthy milestone. Such a long time ago. So many dreams ago, so many hurdles and short-term goals ago, I remember so foggily my entrance to the emergency room, doubled over in pain and now, I feel great and look physically, at least to myself, better than I did in December. Better than I have in quite a few years. So this Friday's anniversary of another trip around the sun, another count of sunrises, all of them gifts, will feel special to me. Special like a true present, a real gift to myself.
My current issues are mainly financial, with not working and trying to keep on top of all my medicines, trying to re-arrange some bills and mainly just staying afloat. Just day-to-day life in this economy, I'm learning.
My medical update: the last bone marrow biopsy (jeez, am I the only guy who gets hungry thinking about his own bone marrow?) showed all new cells, no bad blood, and zero leukemia. I recall Dr. Odenike telling me there was a chance we had to cure cancer, and i believed her. I didn't doubt her one bit and now it seems that is case. A truly miraculous turn of events and a tremendous achievement by all of the medical staff at U of C. Workers of miracles, them peoples.
I'll rap at you folks after the weekend; I've got some more contemplating to do for a day or two, then it's down to less serious matters and rejoicing in the life I been given. Like your clocks up and we'll all raise a toast at 7:35pm CST on Friday.
Thursday, July 22, 2010
You are all invited (so long as you're healthy)
The past ten days or so I have felt marvelous, save for the one occasion when I tried to golf two days in a row. I found on that day that my recovery skills are not what I wish, but hey, I'm still golfing. It could be the heat we've been experiencing, but last year I would have reveled in these same temps, so I blame it on lack of quality bloods cells at this stage of recooperation. Still I managed to play some decent golf this week, back to a level I can be comfortable enough with to talk smack, which is a huge part of my golf enjoyment. Can't talk smack if you can't back it up, you know.
Day 100 is rapidly approaching with a tidbit of knowledge: Statisticly speaking, most of the horrible infections I am so vunerable to take hold within the 100 day mark. So, whoo-hoo, two weeks more until I climb out of DefCon 1. Still I'll be in DefCon 2, but I will be able to relax a bit more around people and not totally freak out like I've been doing on my sojourns into various storefronts.
And, as a bonus, I've been 'given permission' to commence with CHICKENFEST plans!
All of y'all can attend, so long as you're healthy. No runny noses, no sore throats, no sniffles, colds or fevers. No open wounds. No NOTHING that even sounds like a sickness. LouPinella, you can't come. Ricketts, you should probably stay away too. Ii'm a fan and all, don't get me wrong, but your names sound like a major illness.
This Chickenfest craziness will be occuring on September 5th, the Sunday of Labor Day weekend. All you gotta bring is a chicken dish. There will be an evite very soon, so keep an eye open for that. You heard it here.
As for my health, I'm getting stronger again, this time around forming actual muscles, taking less meds - I'm down to seven, I think - and my mind is getting quicker with use. Still, I'm missing the crowds of summerfests I love, with the live music and goofy people watching. I may be able to attend a rock show in October, but certainly not yet. Until I drive my neighbors crazy with my mock shows from the basement, with the stereo cranked up load.
Stay happy people, this is a great life. Let's all take ten minutes and enjoy today. Breathe deep and regard that as a blessing in itself. Look at nature and marvel at its gorgeousness. Have a cocktail and watch the sunset. Whatever, just take a moment to revel in the fact that we're alive. I sure am.
Day 100 is rapidly approaching with a tidbit of knowledge: Statisticly speaking, most of the horrible infections I am so vunerable to take hold within the 100 day mark. So, whoo-hoo, two weeks more until I climb out of DefCon 1. Still I'll be in DefCon 2, but I will be able to relax a bit more around people and not totally freak out like I've been doing on my sojourns into various storefronts.
And, as a bonus, I've been 'given permission' to commence with CHICKENFEST plans!
All of y'all can attend, so long as you're healthy. No runny noses, no sore throats, no sniffles, colds or fevers. No open wounds. No NOTHING that even sounds like a sickness. LouPinella, you can't come. Ricketts, you should probably stay away too. Ii'm a fan and all, don't get me wrong, but your names sound like a major illness.
This Chickenfest craziness will be occuring on September 5th, the Sunday of Labor Day weekend. All you gotta bring is a chicken dish. There will be an evite very soon, so keep an eye open for that. You heard it here.
As for my health, I'm getting stronger again, this time around forming actual muscles, taking less meds - I'm down to seven, I think - and my mind is getting quicker with use. Still, I'm missing the crowds of summerfests I love, with the live music and goofy people watching. I may be able to attend a rock show in October, but certainly not yet. Until I drive my neighbors crazy with my mock shows from the basement, with the stereo cranked up load.
Stay happy people, this is a great life. Let's all take ten minutes and enjoy today. Breathe deep and regard that as a blessing in itself. Look at nature and marvel at its gorgeousness. Have a cocktail and watch the sunset. Whatever, just take a moment to revel in the fact that we're alive. I sure am.
Thursday, July 1, 2010
66 days old.
That's right. I'm 66 days old, not 66 years. That's how old this new immune system is, after accepting my sister's stem cells. At least, I've appeared to have accepted them into my body so far, and have shown no signs of GVHD (. Really, i've displayed no signs of Illness whatsoever. The worst thing to come on through was a small bout with depression, but even that was small and hardly noticeable (I think). I've started working on my golf game, and have gotten really good at a few video games.
Oh! I have also developed a HUGE sweet tooth, a peculiar happening, because prior to my transplant, I had zero desire for sweets. Now, I'm all about the cookies and sugar, even going so far as to place a couple of spoons of sugar in my coffee. That little nugget of information will stop more than a few persons in their tracks. Ice cream, cakes, pies, DingDongs®, you name it, I'm eatin' sweets.
66 is an important number in my healing process. It's two-thirds of the way to day 100, a day talked about in reverent tones by those in the transplant world. I won't even pretend to know why day 100 holds magical powers, but I'm planning on it like a release date from this imposed anti-social activity. Trust me, I really want to be out there in the sun and fun of this Chicago summer, as it is just rocking along without me, dangit.
If anyone is around the SouthWest side of Chicago this 4th of July, feel free to drop on by my house for some burger or brats and some cold refreshments. We'll be hanging out in the yard like there's nothing wrong with anybody. ("remember back in January when I had cancer?""Yeah, that seems like 10 years ago.")
We'll be turning up the tunes from the downtown rawk show and playing some yard games. Come on by! all are welcome.
Oh! Bonus from being in such poor straights this winter: when people see me, it's always this: "you look so good!". I guess when the last time you have been seen you had tubes from everywhere and machines hooked up to every organ, upright equals looking good. Sweet bonus. I honestly think I look like a slob all the time, but even the nurses I see on a weekly basis tell me I look better and healthier every week, so I've got to be making some progress. Today I was told that I am unrecognizable from the fellow they saw in February. I suppose it's a good thing that I've stopped wearing pajamas everywhere, too. That and the upright, walking and talking thing, too.
Okay!~ TO wrap this up: BBQ on Sunday, come on by. Just leave the childrens at home. And bring ice. or Champagne. A summer party can never have too much of either.
Today's picture of health:
Oh! I have also developed a HUGE sweet tooth, a peculiar happening, because prior to my transplant, I had zero desire for sweets. Now, I'm all about the cookies and sugar, even going so far as to place a couple of spoons of sugar in my coffee. That little nugget of information will stop more than a few persons in their tracks. Ice cream, cakes, pies, DingDongs®, you name it, I'm eatin' sweets.
66 is an important number in my healing process. It's two-thirds of the way to day 100, a day talked about in reverent tones by those in the transplant world. I won't even pretend to know why day 100 holds magical powers, but I'm planning on it like a release date from this imposed anti-social activity. Trust me, I really want to be out there in the sun and fun of this Chicago summer, as it is just rocking along without me, dangit.
If anyone is around the SouthWest side of Chicago this 4th of July, feel free to drop on by my house for some burger or brats and some cold refreshments. We'll be hanging out in the yard like there's nothing wrong with anybody. ("remember back in January when I had cancer?""Yeah, that seems like 10 years ago.")
We'll be turning up the tunes from the downtown rawk show and playing some yard games. Come on by! all are welcome.
Oh! Bonus from being in such poor straights this winter: when people see me, it's always this: "you look so good!". I guess when the last time you have been seen you had tubes from everywhere and machines hooked up to every organ, upright equals looking good. Sweet bonus. I honestly think I look like a slob all the time, but even the nurses I see on a weekly basis tell me I look better and healthier every week, so I've got to be making some progress. Today I was told that I am unrecognizable from the fellow they saw in February. I suppose it's a good thing that I've stopped wearing pajamas everywhere, too. That and the upright, walking and talking thing, too.
Okay!~ TO wrap this up: BBQ on Sunday, come on by. Just leave the childrens at home. And bring ice. or Champagne. A summer party can never have too much of either.
Today's picture of health:
Wednesday, June 16, 2010
Still hanging on the line.
Like Laundry, I'm still hanging on the line.
I'm just healthy enough not to require a blood transfusion, just healthy enough not to have any complications, just healthy enough to hang out and do almost nothing. I can fish, but I can't dig for worms. I can walk the dog, but I can't pick up her 'leavings'. Golf appears to be the main activity for me, but I'm to stay out of the sun. So I've been wearing long sleeves and loads of sunscreen, but still having fun out there.
I can eat berries, after frozen or cooked, but I've got a ten ton on the vine. That I'm not allowed to pick due to the likelihood of being scratched and poked by the brambles.
Christian and Dennis have been playing groundskeepers to my house, So i've just got to make them a pie or two from the berries I need picked. Whomever picks them will get a pie too! So come on down to the southside and pick some berries for me, yeah?
Short post today: Nothing new to report, nothing new happening just a slow, long climb to being a completely healthy human again. Seriously, did you expect me to watch soccer all month? It seems all I did in February was watch curling, a bit more exciting of a game. Hockey is over and the baseball in this town leaves me wanting to drown my sorrows, but I'm not allowed to do that either.
I've got golf, and fishing with lures.
And pie making, eventually.
Today's Picture of continuing health:
I'm just healthy enough not to require a blood transfusion, just healthy enough not to have any complications, just healthy enough to hang out and do almost nothing. I can fish, but I can't dig for worms. I can walk the dog, but I can't pick up her 'leavings'. Golf appears to be the main activity for me, but I'm to stay out of the sun. So I've been wearing long sleeves and loads of sunscreen, but still having fun out there.
I can eat berries, after frozen or cooked, but I've got a ten ton on the vine. That I'm not allowed to pick due to the likelihood of being scratched and poked by the brambles.
Christian and Dennis have been playing groundskeepers to my house, So i've just got to make them a pie or two from the berries I need picked. Whomever picks them will get a pie too! So come on down to the southside and pick some berries for me, yeah?
Short post today: Nothing new to report, nothing new happening just a slow, long climb to being a completely healthy human again. Seriously, did you expect me to watch soccer all month? It seems all I did in February was watch curling, a bit more exciting of a game. Hockey is over and the baseball in this town leaves me wanting to drown my sorrows, but I'm not allowed to do that either.
I've got golf, and fishing with lures.
And pie making, eventually.
Today's Picture of continuing health:
Friday, June 4, 2010
Looking for Count Zero
Today marks day 39. This is the day count 'after transplant'.
So far, I'm doing great, or so I'm told by the nurses and doctors in charge of my well-being. Today i will receive the test results of the 30 day bone marrow biopsy. Allegedly. My pelvic bone still feels a tad bruised from last Friday's perferation procedure, but I'm at least able to move around without discomfort, until I lapse back into my slouch mode and throw myself onto the couch, car seat or bed without concern. Only then am I reminded of the holes punched into my bone last week. But today, today I am looking forward to hearing the doctor inform me that no Leukemia was found in the marrow pulled. Which will give me a 60 day reprieve until my next biopsy.
Hoo-Ray!
Maybe I can get more answers today as well, to such questions as: When can I enjoy a cold adult beverage? How long before I can attend an event with a large crowd? When will I be able to fly? When will I be able to return to work?
It seems sort of cruel that I am forced to take the summer off, yet cannot go to baseball games or drink beer. Two of my favorite summertime activities! I feel as if I am grounded and house arrest all at the same time. Stupid cancer. I don't even feel sick! Do I look sick to you?
I suppose that is part of my issues, I've never confronted my own mortality, even in the face of this disease. I've never felt as if I was going to die, never felt as if I needed to live life any fuller than I had been living. I am forced to slow down, though and slowing down was never, ever my thing. I can't handle moderation! I have a hard time with this retirement pace and I find my creative outlets aren't very creative when I've nothing to rest from. Too much rest makes me ornery and feisty. Okay, MORE feisty.
It may be time to start hitting the weights and wearing myself out in a far more physical manner, time to start pushing my body back into shape, if only just to get rid of these restless feelings. The problem is, weight lifting is boring, Sidney. Maybe i'll start bench pressing the dog. That ought to make things at least squirmier.
in the meantime, I will continue my mastery of urban fishing, golf and video-gaming until I scare off all would-be challengers. Thank goodness for online anonymity and gameplay so I can continue to eviscerate at will.
Today I'm not looking for a high score though. I'm looking for Count Zero, and a few answers.
UPDATE!!:
The results are back from the biopsy and I was told that there is no sign of Leukemia and I'm on the superstar healing program. I'm to remain in boredom land and refrain from most of the good summertime activities, as whined about above, and to remember, no swimming for a year, no yard work and stay away from the children under the age of 16. Those sick buggers.
So far, I'm doing great, or so I'm told by the nurses and doctors in charge of my well-being. Today i will receive the test results of the 30 day bone marrow biopsy. Allegedly. My pelvic bone still feels a tad bruised from last Friday's perferation procedure, but I'm at least able to move around without discomfort, until I lapse back into my slouch mode and throw myself onto the couch, car seat or bed without concern. Only then am I reminded of the holes punched into my bone last week. But today, today I am looking forward to hearing the doctor inform me that no Leukemia was found in the marrow pulled. Which will give me a 60 day reprieve until my next biopsy.
Hoo-Ray!
Maybe I can get more answers today as well, to such questions as: When can I enjoy a cold adult beverage? How long before I can attend an event with a large crowd? When will I be able to fly? When will I be able to return to work?
It seems sort of cruel that I am forced to take the summer off, yet cannot go to baseball games or drink beer. Two of my favorite summertime activities! I feel as if I am grounded and house arrest all at the same time. Stupid cancer. I don't even feel sick! Do I look sick to you?
I suppose that is part of my issues, I've never confronted my own mortality, even in the face of this disease. I've never felt as if I was going to die, never felt as if I needed to live life any fuller than I had been living. I am forced to slow down, though and slowing down was never, ever my thing. I can't handle moderation! I have a hard time with this retirement pace and I find my creative outlets aren't very creative when I've nothing to rest from. Too much rest makes me ornery and feisty. Okay, MORE feisty.
It may be time to start hitting the weights and wearing myself out in a far more physical manner, time to start pushing my body back into shape, if only just to get rid of these restless feelings. The problem is, weight lifting is boring, Sidney. Maybe i'll start bench pressing the dog. That ought to make things at least squirmier.
in the meantime, I will continue my mastery of urban fishing, golf and video-gaming until I scare off all would-be challengers. Thank goodness for online anonymity and gameplay so I can continue to eviscerate at will.
Today I'm not looking for a high score though. I'm looking for Count Zero, and a few answers.
UPDATE!!:
The results are back from the biopsy and I was told that there is no sign of Leukemia and I'm on the superstar healing program. I'm to remain in boredom land and refrain from most of the good summertime activities, as whined about above, and to remember, no swimming for a year, no yard work and stay away from the children under the age of 16. Those sick buggers.
Sunday, May 23, 2010
Home is sweet now!
I've been home now for little more than a week. It is good to be home! sleeping in my own bed, uninterrupted sleep (by both nurse and IV pole beep), the constant company of my dog, friends helping me out, life seems to be on quite the uptick. I still get frustrated because I'd like to garden a bit, and spend more time in the sun, but the reality is this slightly inconvenient style of life is a much better alternative to being on the wrong side of the dirt.
I am surprised to be still sporting my mohawk; a lot of my hair fell out, and it is quite thinner than when I went into the hospital a month ago, but if you never saw me before the chemo you'd never know. My 'playoff beard' looks a bit scraggly, but not much worse than some of the Blackhawk beards. I will shave that soon, I don't like the white very much. Leslie calls it 'distinguished' but I think she's just being kind. I did shave much of the beard last week - after I shaved in the hospital with nothing more than a washcloth and some soap! - and still don't actually need a shave again; quite the odd thing for a guy who used to gain a five o'clock shadow by three.
Life at home is a lot more tiring than I perceived it to be as everything wears me out: going up stairs, going downstairs, making the bed, doing laundry, I mean everything just takes more energy than I have to spend. Naps, man, naps are a wonderful thing. But I can drive without too much effort, and the shaking head of my doctor, but as I am told by the nurses, I doing far better than most of the patients in my situation. Hell, my immune system is only 26 days old. I'm a bay-bee! So I try and make myself stronger by staying on my exercise bike and pushing the limits of what I think I can do. Mostly avoiding the doldrums that I believe could be detrimental to my situation; I honestly believe attitude and mental perception are my strengths, so I work to keep both very healthy.
If you've got some free time, feel free to call me! My number is 773 284 2617. I can't promise not to swear, but I can promise it won't be at you. Email works too. I'm most always at home, stop on by! we can play cards or video games, or just shoot the breeze on the back porch. I might put you to work in the flower beds, but you can handle it. Later in the summer (not much!) I'm going to need volunteers to pick my raspberries, pickers get first crack at whatever dessert I devise, be it sorbet or baked goods.
Oh, but I wasn't home yesterday afternoon! I actually made it around the nine hole course nearby without falling down or wiping myself out too bad. Although I napped later and went to bed early, still it felt good to do an exercise I enjoy and get the wind in my face. Just between you and I though, I have no strength and lost a few yards on yards on my irons. I can still putt though. Didn't lose a ball either. High score though...
Next week I'm desperate to get myself some fishing. We'll see if I can't arrange that. Until then, it's household duties, walking around the block, and video action.
My spirits are high, my heart rate remains regular and steady, and the sun comes up every morning. Things are sweet.
I am surprised to be still sporting my mohawk; a lot of my hair fell out, and it is quite thinner than when I went into the hospital a month ago, but if you never saw me before the chemo you'd never know. My 'playoff beard' looks a bit scraggly, but not much worse than some of the Blackhawk beards. I will shave that soon, I don't like the white very much. Leslie calls it 'distinguished' but I think she's just being kind. I did shave much of the beard last week - after I shaved in the hospital with nothing more than a washcloth and some soap! - and still don't actually need a shave again; quite the odd thing for a guy who used to gain a five o'clock shadow by three.
Life at home is a lot more tiring than I perceived it to be as everything wears me out: going up stairs, going downstairs, making the bed, doing laundry, I mean everything just takes more energy than I have to spend. Naps, man, naps are a wonderful thing. But I can drive without too much effort, and the shaking head of my doctor, but as I am told by the nurses, I doing far better than most of the patients in my situation. Hell, my immune system is only 26 days old. I'm a bay-bee! So I try and make myself stronger by staying on my exercise bike and pushing the limits of what I think I can do. Mostly avoiding the doldrums that I believe could be detrimental to my situation; I honestly believe attitude and mental perception are my strengths, so I work to keep both very healthy.
If you've got some free time, feel free to call me! My number is 773 284 2617. I can't promise not to swear, but I can promise it won't be at you. Email works too. I'm most always at home, stop on by! we can play cards or video games, or just shoot the breeze on the back porch. I might put you to work in the flower beds, but you can handle it. Later in the summer (not much!) I'm going to need volunteers to pick my raspberries, pickers get first crack at whatever dessert I devise, be it sorbet or baked goods.
Oh, but I wasn't home yesterday afternoon! I actually made it around the nine hole course nearby without falling down or wiping myself out too bad. Although I napped later and went to bed early, still it felt good to do an exercise I enjoy and get the wind in my face. Just between you and I though, I have no strength and lost a few yards on yards on my irons. I can still putt though. Didn't lose a ball either. High score though...
Next week I'm desperate to get myself some fishing. We'll see if I can't arrange that. Until then, it's household duties, walking around the block, and video action.
My spirits are high, my heart rate remains regular and steady, and the sun comes up every morning. Things are sweet.
Thursday, May 13, 2010
Race ya!
Tomorrow i go home. Allegedly. I've remained a boring patient for most of this stay at the hospital, except for last Friday, when my heart went into "atrial flutter". Which meant they (the docs) sent me down the hall from the transplant wing into a room with a heart monitor, as my heart wouldn't release the beat of 160 without some sort of treatment. Many drug trials later, the docs reduced my rate back to a normal beat and rhythm on Saturday, only for my crazy heart to develop an "atrial fibrillation" on Monday. Again with drug trials and beta-blockers and now i'm at a regular rhythm again, and it appears that I can go home tomorrow. As long as i can make it through the night without incident, and I can stay at home as long as I can remain without illness, infection and more heart racing incidents. There will be no lawn-mowing, no gardening, no strenuous activity for a while and no heavy duty work around the house. Luckily for me it is almost summer and I can concentrate on golfing and fishing, right? Anyone who cares to drop a line in the water should look me up, my license is up to date and my reels are all wound. My golf clubs should be in order, but my dreams have told me otherwise and they are all i have to gauge my golf by these days. Perhaps we can form a group and make road rally to the drive-in some saturday night - it is the one way for me to see movies without being in a large crowd of people. I'll race you for the good spot in the middle in front of the snack bar.
Friday, April 30, 2010
"Bored is Good"
The doctors and nurses coming through my room who look me over and check my signs all say the same thing: "bored is good". Compared to my last extended stay here at the UofC Hospitals, I can agree, but my mind compared to then is far more alert and my body certainly feels much, much stronger. I can get out of bed without help, for starters. i can walk down the hall and take rides on the stationary bike, too, but getting out of bed and spinning a wheel for any period of time doesn't take away the feeling of boredom. It must be time for me to work on being a patient patient.
My lab results as of this morning mark me as Neutropenic as my platelet count went below 50 (42) and my WBC fell to 0.9. The White Blood Count surprises me, because I started receiving the shots that are meant to spur on the growth of more WBC, but I was told today that would take nearly a week. I should have realized that from the treatment my sister Jeanne went through and so I will have to just wait for my counts to get back to the normal person range. While I count the days, of course.
My friends are still amazing me with their kindness and outpouring of affection. I've had a nice small stream of close friends bringing me foods I love (today i had pork chop sammich from Maxwell Street. Damn good) and keeping me entertained as well as can be entertained in this 12 x 10 box. If I didn't have my friends, I would have lost my mind a few days ago, even though the staff in the hospital try and keep us patients happy (i.e., the pina coloda smoothie I'm sucking down from the afternoon ice cream cart while i type), because I am just not accustomed to waiting for things to happen. I much rather prefer to poke sticks in the fire and raise more flames. Perhaps i will start poking at things next week if I get stir crazy. For right now, however, I will adhere to the mantra of all the medical professionals in charge of my health and myself and just repeat "Bored is Good". It's gotta beat the agony of tubes in every orifice and complete muscle atrophy, yeah?
My lab results as of this morning mark me as Neutropenic as my platelet count went below 50 (42) and my WBC fell to 0.9. The White Blood Count surprises me, because I started receiving the shots that are meant to spur on the growth of more WBC, but I was told today that would take nearly a week. I should have realized that from the treatment my sister Jeanne went through and so I will have to just wait for my counts to get back to the normal person range. While I count the days, of course.
My friends are still amazing me with their kindness and outpouring of affection. I've had a nice small stream of close friends bringing me foods I love (today i had pork chop sammich from Maxwell Street. Damn good) and keeping me entertained as well as can be entertained in this 12 x 10 box. If I didn't have my friends, I would have lost my mind a few days ago, even though the staff in the hospital try and keep us patients happy (i.e., the pina coloda smoothie I'm sucking down from the afternoon ice cream cart while i type), because I am just not accustomed to waiting for things to happen. I much rather prefer to poke sticks in the fire and raise more flames. Perhaps i will start poking at things next week if I get stir crazy. For right now, however, I will adhere to the mantra of all the medical professionals in charge of my health and myself and just repeat "Bored is Good". It's gotta beat the agony of tubes in every orifice and complete muscle atrophy, yeah?
Wednesday, April 28, 2010
Transplant complete
Now the transplant is done, I'm all better and can get on to getting home, yeah?
Not that fast or simple, my peoples. i wish it were. Now comes the steep and heavy watchful eyes on my poor battered immuno system. I must remain healthy. No infections, no illnesses, no colds, no sneezing, no throat tickles, no nothing.
The transplant itself was indeed anti-climactic. I actually slept through most of it, as the additive they put in the stem cells from Jeanne, made me sleepy when combined with the Adovair(sp?). And today, the day after, I apparently smell an awful lot like creamed corn. Cooking up right here in my little chamber at the U of C Medical Center. Of course, i cannot smell it, as it the odor is oozing from my pores, but those who walk in my small domain comment on it as if I were the Del Monte man himself. The other small side effect I noticed was that with every bag of cells, my face would flush and my temperature would elevate a tad. But after the second bag, I slept though the remainder of the transplant, so I cannot accurately relay if this occurred on every bag.
Yesterday, after I awoke from my restful procedure, my appetite was back on track, and I was ravished and ate a hot dog, followed by some beef panang. Now as I wake this morning, my usual hunger pains that I have become accustomed to having the minute I open my eyes are not with me. In fact I feel bloated and full, even though I am not holding anything inside, at least not that I'm aware. i wonder if one or two of these anti-biotics are bloating me out or maybe it was the MSG in my panang. Either way, I am not hungry as per usual, and that is kind of bumming me out a bit. I do have a bit of nervous energy, but that may be from all of the sleep I've accumulated in the past 36 hours. I suspect that as soon as I am able (when the lounge opens) I will go down the hall and get on the stationary bike, just to calm myself down and perhaps burn off some of this bloat.
The sun comes up as I write and I can't help to think "Another Sunrise Seen, Another Blessing". Little more than three months ago, I certainly was in no shape to even think about moving around and getting down the hall, let alone on a bike of any sorts. All i have to this time is stay the hell outta the ICU, remain healthy, and wait. Tick, tock.
I appreciate all the well wishes, prayers and thoughts that came across yesterday, and I hope you all will see me succeed at kicking cancer's carapace in a righteous manner. When I am well, I will invite you all to a grand party for us all to celebrate together, so that I may show my gratitude in person.
Patience.
Not that fast or simple, my peoples. i wish it were. Now comes the steep and heavy watchful eyes on my poor battered immuno system. I must remain healthy. No infections, no illnesses, no colds, no sneezing, no throat tickles, no nothing.
The transplant itself was indeed anti-climactic. I actually slept through most of it, as the additive they put in the stem cells from Jeanne, made me sleepy when combined with the Adovair(sp?). And today, the day after, I apparently smell an awful lot like creamed corn. Cooking up right here in my little chamber at the U of C Medical Center. Of course, i cannot smell it, as it the odor is oozing from my pores, but those who walk in my small domain comment on it as if I were the Del Monte man himself. The other small side effect I noticed was that with every bag of cells, my face would flush and my temperature would elevate a tad. But after the second bag, I slept though the remainder of the transplant, so I cannot accurately relay if this occurred on every bag.
Yesterday, after I awoke from my restful procedure, my appetite was back on track, and I was ravished and ate a hot dog, followed by some beef panang. Now as I wake this morning, my usual hunger pains that I have become accustomed to having the minute I open my eyes are not with me. In fact I feel bloated and full, even though I am not holding anything inside, at least not that I'm aware. i wonder if one or two of these anti-biotics are bloating me out or maybe it was the MSG in my panang. Either way, I am not hungry as per usual, and that is kind of bumming me out a bit. I do have a bit of nervous energy, but that may be from all of the sleep I've accumulated in the past 36 hours. I suspect that as soon as I am able (when the lounge opens) I will go down the hall and get on the stationary bike, just to calm myself down and perhaps burn off some of this bloat.
The sun comes up as I write and I can't help to think "Another Sunrise Seen, Another Blessing". Little more than three months ago, I certainly was in no shape to even think about moving around and getting down the hall, let alone on a bike of any sorts. All i have to this time is stay the hell outta the ICU, remain healthy, and wait. Tick, tock.
I appreciate all the well wishes, prayers and thoughts that came across yesterday, and I hope you all will see me succeed at kicking cancer's carapace in a righteous manner. When I am well, I will invite you all to a grand party for us all to celebrate together, so that I may show my gratitude in person.
Patience.
Sunday, April 25, 2010
Last day of Chemo, today Sunday the 25th.
Today will be my last day of chemo and allegedly this is the day that will do the most damage to my body. This malphalan stuff will make me lose my hair, give me mouth sores and diarrhea. What a Sunday Funday!
Oh, yeah, I had to take the anti-nausea meds first so I'm not all pukey. Hopefully, I get through this with most of the above happening, but my immune system, the one that I have gotten used to removing all illnesses within hours, has been disabled and wiped out in the effort to prepare my body for the transplant on Tuesday. Before Tuesday's transplant comes Monday, my only day off from Chemo and treatments. I'm curious to see if I get separated from my constant companion during this stay at Hotel de University of Chicago, the IV pole. He's not very talkative and most of the time, is just trying to trip me up, slow me down, or hold me back. That rat bastard. I'd like to throw him in the River.
Don't get me wrong, I'm not trying to complain here, I'm just bit run-down and keep getting more run down as my treatment moves along; I was told this would happen and I am prepared as well as anyone could be.
I am grateful for all of my friends who have written me and come to visit me in my 'hotel' rooms. I feel as if I have the biggest support team around and they give me the strength I need to move forward and get out of this cancerous situation. I am extremely grateful for my sister Jeanne's kind donation of time and Stem cells. I'll be writing letters to Santa on her behalf, you can bet on that. I'm grateful for my angel, the lovely Leslie, for without her constant questioning, I wouldn't be as healthy as I am now, and realistically, missing an organ or two if she hadn't started questioning the doctors from day one. She's been the real rock throughout this ordeal, and also the comforting pillow where I can rest my head, reviving my strength for me to continue on and continue my fight.
I'll be out of the hospital in little more than two weeks, and hope to be living my normal life at the beginning of July. I was hoping for the beginning of June, but that would be too amazing for even the best superhero. In all likely hood, that means no Bluesfest for me. Mark my words right now, There will be a Chickenfest this summer and all of y'all are invited. The date will be revealed (or decided upon) when I can fully claim myself to be free of cancer so we can celebrate with beer and chicken-eating.
While I wrote this, the Malphalan was pumped into my central line and this line of type signifies the end of my Chemo. Not the effects, mind you, but the end of mean spirited drugs entering my veins. Hooray for that, and thanks for all your well wishing, prayers, cards, emails and what-nots. I hope to thank you all in person while we eat chicken this summer.
Tuesday is transplant day, so send Jeanne some thanks and Leslie some help so we can all be happy together, yeah?
Oh, yeah, I had to take the anti-nausea meds first so I'm not all pukey. Hopefully, I get through this with most of the above happening, but my immune system, the one that I have gotten used to removing all illnesses within hours, has been disabled and wiped out in the effort to prepare my body for the transplant on Tuesday. Before Tuesday's transplant comes Monday, my only day off from Chemo and treatments. I'm curious to see if I get separated from my constant companion during this stay at Hotel de University of Chicago, the IV pole. He's not very talkative and most of the time, is just trying to trip me up, slow me down, or hold me back. That rat bastard. I'd like to throw him in the River.
Don't get me wrong, I'm not trying to complain here, I'm just bit run-down and keep getting more run down as my treatment moves along; I was told this would happen and I am prepared as well as anyone could be.
I am grateful for all of my friends who have written me and come to visit me in my 'hotel' rooms. I feel as if I have the biggest support team around and they give me the strength I need to move forward and get out of this cancerous situation. I am extremely grateful for my sister Jeanne's kind donation of time and Stem cells. I'll be writing letters to Santa on her behalf, you can bet on that. I'm grateful for my angel, the lovely Leslie, for without her constant questioning, I wouldn't be as healthy as I am now, and realistically, missing an organ or two if she hadn't started questioning the doctors from day one. She's been the real rock throughout this ordeal, and also the comforting pillow where I can rest my head, reviving my strength for me to continue on and continue my fight.
I'll be out of the hospital in little more than two weeks, and hope to be living my normal life at the beginning of July. I was hoping for the beginning of June, but that would be too amazing for even the best superhero. In all likely hood, that means no Bluesfest for me. Mark my words right now, There will be a Chickenfest this summer and all of y'all are invited. The date will be revealed (or decided upon) when I can fully claim myself to be free of cancer so we can celebrate with beer and chicken-eating.
While I wrote this, the Malphalan was pumped into my central line and this line of type signifies the end of my Chemo. Not the effects, mind you, but the end of mean spirited drugs entering my veins. Hooray for that, and thanks for all your well wishing, prayers, cards, emails and what-nots. I hope to thank you all in person while we eat chicken this summer.
Tuesday is transplant day, so send Jeanne some thanks and Leslie some help so we can all be happy together, yeah?
Sunday, April 18, 2010
I get my hair cut twice a year, whether it needs it or not...
(apologies for the sideways viewing)
I'm a big fan of mohawks and think they look supercool.
Cancer hasn't met a guy like me before. I'm about to open up a gigantic can of whoop-ass on Señor leukemia and hope to never see him again.
Thanks to my sister and her donation of time and stem cells, I should be healthy and back to normal style living before summer's start, at least that's what I'm on planning on. The doctorinos are preaching caution and guarded optimism but I can't start thinking of losing any battles in my personal war against the cancer in my blood. Hell, I've amazed myself in the vast difference between pictures I took of myself in January and what I see today in the mirror.
So I've cut my hair in the style of the classic fierce American warrior, as I prepare to take no prisoners and cut the fear out of the word "cancer" right along ridding the cancer from my body.
Monday, April 12, 2010
A Screwy Blessing In Disguise & Random Roadtrips
Monday April 12, 2010
Hey All, Leslie here. Man, do I have some interesting updates for you all.
Okay first and foremost, Mark is doing so incredibly well. His doctors actually have postponed his admit date to April 19th, and his actual transplant will not happen now until April 26th. The week of the 19th he will begin the hardcore drug treatment, "pre-op" plan, and yes, we just found out that he will be losing his hair. They are giving him 1 shot, of 1 drug, only 1 time. It's called Melphalan, and he'll be getting it on the day after he's admitted. It's apparently so potent, it will definitely kill his hair follicle cells too. He's surprisingly okay with this, as he's planning a mohawk. You think I'm kidding. He wants to dye it blonde. I promise you, I'll take pics.
So...here's a bit of my news: I was laid off from my job, (of 12 years), on April 1. I'm finally pretty okay with it. I get to be with Mark as much as possible as he goes through this, and I don't have to worry about my PTO days or any other "day job" nonsense. Yes, I was completely blindsided and in shock. Mark totally took care of me and has been absolutely wonderful with my ups and downs in dealing with it. It really is like a death, especially after you've been at the same company for so long. Thankfully, I was taken care of with a severance and am now on unemployment, as I figure out my next steps. I knocked my resume into shape, after not having looked at it for oh...a decade or so (I know, bad!!), and I realized that I actually do have a LOT of marketable skills and that there really is no reason for me to be freaked out. My initial panic and anxiety had me convincing myself that I'd never find another job ever again...(my flair for the dramatic works in bad ways too...lol). I'll be okay, I will land on my feet. I always do. Thank god for the amazing support system I've got around me. Thank god for Mark. So, I'm trying to believe this was my screwy blessing in disguise. The possibilities are endless, and this is truly a once in a lifetime kind of thing, so my goodness am I going to enjoy this. I have so many ideas for what I'm going to do, and I can't wait to try them all. In the meantime, I get to be close by the man I love as he travels through one of the most difficult times in his life. Thank you universe for forcing me out of my comfort zone in order to embark onto better things.
In the time I've been laid off, Mark and I have had so much fun. We've been to two Sox games (yes, he's a die-hard Cubs fan, but they weren't in town for opening week, so if Mark has any chance to see baseball, he's all about it, even if it is the Sox). His doctor even cleared it that he could go, that it was alright that he was around that many people because it was in the open air.
We went to Cascade drive-in movie theater to see a double feature, (Clash of the Titans & Cop Out). Since he can't be actually "in" a movie theater with tons of people around, a drive in was perfect.
Our next "no day jobs" adventure, had us at Hawthorne Race Track to see the Illinois Derby. I won $17. ;)
And the best part? As I type this, I'm sitting on the back porch of a Palm City, FL home, staring out into a beautiful lake, in 75 degree weather. When his appointment was switched, we decided to hop into the car, (we brought Godiva), to take a spontaneous road trip to visit his brother Pat and his sister-in-law Cheri before he went in for transplant. How cool is that?? We've had a blast driving down here. We stopped in Nashville, TN and saw Music City and had some traditional Tennessee bbq. Next, we headed to Savannah, GA and hung out a bit on the River Walk, (what a beautiful city. I would love to go back and spend more time there). Our next stop was in Melbourne, FL where we stopped at Bonefish Willy's to have some fresh oysters & beer...right on the water,(it was delightful). Then, we hightailed it to Palm City, FL to surprise his brother. Cheri, (Pat's wife) knew we were coming, but Pat did not so it was a huge surprise to him to see Mark walking up to his front door with Godiva and myself. It was a pretty cool moment. After only having heard (and read) the crazy stuff his brother had been through, I'm sure it did Pat's soul good to see Mark, beaming smile and all, walking up his front porch to greet him. I personally got a bit choked up to tell ya the truth.
We hung out last night with Pat & Cheri and Mark made a delicious dinner of fresh shrimp & steak, with asparagus and a caprese salad. The four of us drank wine and played poker and laughed...a lot. It was truly a lovely time. Pat & Cheri's house is so pretty and homey and just plain relaxing. Godiva & their dog, Bailey get along for the most part, aside from a few tense moments, it's been totally fine. Godiva almost immediately went for a swim, and I got it on video, (trying to figure out how to get it uploaded here...will post as soon as that happens). :)
I think today's plan might either be golf or the beach, not sure...who cares though, we're on vacation right? Mark and Pat and the dogs are fishing off of the dock now, what a lovely time.
Will keep you all updated as the days get closer to transplant. Mark's in amazingly great spirits, and he is still in his ass kicking mindset, which I believe makes all the difference in the world.
Love to you all.
-Leslie & Mark
Some pix and a video:
Mark at one of the Sox games we went to, wearing the Rockies windbreaker that his dad sent him from Vegas:
Mark, as happy as can be after eating some fresh oysters and drinking some beer at Bonefish Willy's in Melbourne, FL:
Me, (also after oysters), at Bonefish Willy's in Melbourne, FL...good shot by Mark, with his cell phone!!:
Mark & Pat, all smiles!!
Hey All, Leslie here. Man, do I have some interesting updates for you all.
Okay first and foremost, Mark is doing so incredibly well. His doctors actually have postponed his admit date to April 19th, and his actual transplant will not happen now until April 26th. The week of the 19th he will begin the hardcore drug treatment, "pre-op" plan, and yes, we just found out that he will be losing his hair. They are giving him 1 shot, of 1 drug, only 1 time. It's called Melphalan, and he'll be getting it on the day after he's admitted. It's apparently so potent, it will definitely kill his hair follicle cells too. He's surprisingly okay with this, as he's planning a mohawk. You think I'm kidding. He wants to dye it blonde. I promise you, I'll take pics.
So...here's a bit of my news: I was laid off from my job, (of 12 years), on April 1. I'm finally pretty okay with it. I get to be with Mark as much as possible as he goes through this, and I don't have to worry about my PTO days or any other "day job" nonsense. Yes, I was completely blindsided and in shock. Mark totally took care of me and has been absolutely wonderful with my ups and downs in dealing with it. It really is like a death, especially after you've been at the same company for so long. Thankfully, I was taken care of with a severance and am now on unemployment, as I figure out my next steps. I knocked my resume into shape, after not having looked at it for oh...a decade or so (I know, bad!!), and I realized that I actually do have a LOT of marketable skills and that there really is no reason for me to be freaked out. My initial panic and anxiety had me convincing myself that I'd never find another job ever again...(my flair for the dramatic works in bad ways too...lol). I'll be okay, I will land on my feet. I always do. Thank god for the amazing support system I've got around me. Thank god for Mark. So, I'm trying to believe this was my screwy blessing in disguise. The possibilities are endless, and this is truly a once in a lifetime kind of thing, so my goodness am I going to enjoy this. I have so many ideas for what I'm going to do, and I can't wait to try them all. In the meantime, I get to be close by the man I love as he travels through one of the most difficult times in his life. Thank you universe for forcing me out of my comfort zone in order to embark onto better things.
In the time I've been laid off, Mark and I have had so much fun. We've been to two Sox games (yes, he's a die-hard Cubs fan, but they weren't in town for opening week, so if Mark has any chance to see baseball, he's all about it, even if it is the Sox). His doctor even cleared it that he could go, that it was alright that he was around that many people because it was in the open air.
We went to Cascade drive-in movie theater to see a double feature, (Clash of the Titans & Cop Out). Since he can't be actually "in" a movie theater with tons of people around, a drive in was perfect.
Our next "no day jobs" adventure, had us at Hawthorne Race Track to see the Illinois Derby. I won $17. ;)
And the best part? As I type this, I'm sitting on the back porch of a Palm City, FL home, staring out into a beautiful lake, in 75 degree weather. When his appointment was switched, we decided to hop into the car, (we brought Godiva), to take a spontaneous road trip to visit his brother Pat and his sister-in-law Cheri before he went in for transplant. How cool is that?? We've had a blast driving down here. We stopped in Nashville, TN and saw Music City and had some traditional Tennessee bbq. Next, we headed to Savannah, GA and hung out a bit on the River Walk, (what a beautiful city. I would love to go back and spend more time there). Our next stop was in Melbourne, FL where we stopped at Bonefish Willy's to have some fresh oysters & beer...right on the water,(it was delightful). Then, we hightailed it to Palm City, FL to surprise his brother. Cheri, (Pat's wife) knew we were coming, but Pat did not so it was a huge surprise to him to see Mark walking up to his front door with Godiva and myself. It was a pretty cool moment. After only having heard (and read) the crazy stuff his brother had been through, I'm sure it did Pat's soul good to see Mark, beaming smile and all, walking up his front porch to greet him. I personally got a bit choked up to tell ya the truth.
We hung out last night with Pat & Cheri and Mark made a delicious dinner of fresh shrimp & steak, with asparagus and a caprese salad. The four of us drank wine and played poker and laughed...a lot. It was truly a lovely time. Pat & Cheri's house is so pretty and homey and just plain relaxing. Godiva & their dog, Bailey get along for the most part, aside from a few tense moments, it's been totally fine. Godiva almost immediately went for a swim, and I got it on video, (trying to figure out how to get it uploaded here...will post as soon as that happens). :)
I think today's plan might either be golf or the beach, not sure...who cares though, we're on vacation right? Mark and Pat and the dogs are fishing off of the dock now, what a lovely time.
Will keep you all updated as the days get closer to transplant. Mark's in amazingly great spirits, and he is still in his ass kicking mindset, which I believe makes all the difference in the world.
Love to you all.
-Leslie & Mark
Some pix and a video:
Mark at one of the Sox games we went to, wearing the Rockies windbreaker that his dad sent him from Vegas:
Mark, as happy as can be after eating some fresh oysters and drinking some beer at Bonefish Willy's in Melbourne, FL:
Me, (also after oysters), at Bonefish Willy's in Melbourne, FL...good shot by Mark, with his cell phone!!:
Mark & Pat, all smiles!!
Wednesday, March 31, 2010
Spring Break!
I'm on Spring Break.
From the hospital, from Doctor's appointments, from Chemo treatments and from the brutal Chicago winter. I don't have to return to the doctor until April 7th; Such a long time, I having a hard time comprehending. So I'm keeping this here post short, because I'm about to go outside with the dog in the sun and sixty-plus degree temps.
I leave you with this picture of my health.
From the hospital, from Doctor's appointments, from Chemo treatments and from the brutal Chicago winter. I don't have to return to the doctor until April 7th; Such a long time, I having a hard time comprehending. So I'm keeping this here post short, because I'm about to go outside with the dog in the sun and sixty-plus degree temps.
I leave you with this picture of my health.
Friday, March 26, 2010
GREAT NEWS!!!!!
Friday March 26, 2010
What a way to kick off the weekend you guys!!!
I just got to my office and received a text from Mark. He's at his Friday morning doctor's appointment. Last Friday was his 2nd bone marrow biopsy, and so we've been waiting all week to find out what's up. His text said "the bone marrow biopsy shows no signs of the disease at all, I'm considered to be in "total remission"..." Which means that he is totally greenlit for his transplant to happen asap.
Mark's sis Jeanne has gone through her barrage of testing and we're just waiting to hear that she's ok and healthy too; and once that happens, they'll harvest the stem cells from her blood, and Mark will receive them asap. Then, we'll be counting the days that we're "out from transplant". I'M personally counting the days until I can start saying (and typing and texting) "Day 1 from transplant"...(and so on, and so on, and so on).
Today though everyone...is a milestone. I believe it's something to celebrate and be very happy for. Today we focus on the positive, we give thanks for the good things that have happened, and we keep moving forward.
Love to you all.
-Leslie (& Mark)
What a way to kick off the weekend you guys!!!
I just got to my office and received a text from Mark. He's at his Friday morning doctor's appointment. Last Friday was his 2nd bone marrow biopsy, and so we've been waiting all week to find out what's up. His text said "the bone marrow biopsy shows no signs of the disease at all, I'm considered to be in "total remission"..." Which means that he is totally greenlit for his transplant to happen asap.
Mark's sis Jeanne has gone through her barrage of testing and we're just waiting to hear that she's ok and healthy too; and once that happens, they'll harvest the stem cells from her blood, and Mark will receive them asap. Then, we'll be counting the days that we're "out from transplant". I'M personally counting the days until I can start saying (and typing and texting) "Day 1 from transplant"...(and so on, and so on, and so on).
Today though everyone...is a milestone. I believe it's something to celebrate and be very happy for. Today we focus on the positive, we give thanks for the good things that have happened, and we keep moving forward.
Love to you all.
-Leslie (& Mark)
Tuesday, March 23, 2010
Picture Proof: Feb 8th and Today
I feel awesome. Okay, I feel awesome every other day. It seems as if I feel too good, over-extend myself, then just crash in a tired heap the following day. Then I feel great again. Like today, I feel as if I never had Leukemia and will continue to feel super until I try to open a soda or climb more than a flight and a half of stairs, at that point I will be reminded that I a weakling. So I'm drinking coffee, OJ and water while remaining at home.
I cannot say if this is "remission" from Leukemia, but I sure feel "normal". Which makes me dread the near future all the more, because I'm not really looking forward to more time in bed,
sick with flu-like symptoms, for three weeks. I better get my reading list together, and quick.
My bloodwork results are quite shocking to see in comparison from just two months ago. Freakin' amazing stuff, really: My white blood count is down to 3.7, from 114. My red blood counts are still a tad low, as is my hemoglobin. My lymphocyte numbers have dropped to the low end of normal, and I'm rockin' the health-o-meter with my lowering of my resting heart rate with each visit to the clinic.
Tomorrow I should be getting back the results from Friday's biopsy of my Bone Marrow, which left me with a sore ass over the weekend, and my number one comfortable position is the ram-rod straight sitting position, with perfect posture. My readiness to slouch has been hampered by a twinge of pain as I try to slide into what used to be comfortable. Now it's sit like a proper englishman or go lay down. Thank the stars that only lasted a few days and now I just feel a bit bruised in the behind.
the anxiety is still building towards the transplant and all that leads to it, I'm hoping I can get through this without too much complaining and whining and come out the other side ready for golf, barbequeing and everything else summer brings. Like Chickenfest. Can't wait for that, but I can't plan too much because of the date unsuredness.
More later. Hopefully tomorrow I will being you good news from my marrow results.
I cannot say if this is "remission" from Leukemia, but I sure feel "normal". Which makes me dread the near future all the more, because I'm not really looking forward to more time in bed,
sick with flu-like symptoms, for three weeks. I better get my reading list together, and quick. My bloodwork results are quite shocking to see in comparison from just two months ago. Freakin' amazing stuff, really: My white blood count is down to 3.7, from 114. My red blood counts are still a tad low, as is my hemoglobin. My lymphocyte numbers have dropped to the low end of normal, and I'm rockin' the health-o-meter with my lowering of my resting heart rate with each visit to the clinic.
Tomorrow I should be getting back the results from Friday's biopsy of my Bone Marrow, which left me with a sore ass over the weekend, and my number one comfortable position is the ram-rod straight sitting position, with perfect posture. My readiness to slouch has been hampered by a twinge of pain as I try to slide into what used to be comfortable. Now it's sit like a proper englishman or go lay down. Thank the stars that only lasted a few days and now I just feel a bit bruised in the behind.
the anxiety is still building towards the transplant and all that leads to it, I'm hoping I can get through this without too much complaining and whining and come out the other side ready for golf, barbequeing and everything else summer brings. Like Chickenfest. Can't wait for that, but I can't plan too much because of the date unsuredness.
More later. Hopefully tomorrow I will being you good news from my marrow results.
Sunday, March 14, 2010
i'm trying not to fool myself
This past week, I've gotten over the baby steps and made some great strides in wellness. I've gotten the trach tube removed and watched the hole in my throat go from a half inch wide to smaller than a cocktail straw in the opening. I've gotten over the pneumonia and started driving again. i've become comfortable in the kitchen again, and ventured down full length staircases. I have picked up a gold club and made swings without pain. Yes, I'm bragging. Geez, you would too, if you were in a coma two months ago. I'm starting to feel good, and I'm riding a stationary bike for cardio and leg strength. Perhaps i'm feeling too good, because I forget that I'm actually very sick and tend to over extend myself and then sleep for too many hours, worn out from what used to be a half-day's activity. Perhaps i'm feeling too good because I forget that I am to avoid crowds of people and illness centers such as the grocery store. Then i remember that I will have to be confined to a hospital for three weeks after my upcoming transplant and that allows me to enjoy these freedoms that i have now and prepare myself for the normal life that I expect to have in the upcoming summer.
Whatever sort of prescription plan that I'm on, courtesy of my medical team, with the Campath leading the way, is working wonders for me. My blood counts are that of a healthy individual, extremely healthy even. I just have to remain healthy for these next few weeks so I can make it through the hell of feverish days stuck in a hospital bed.
I'm going to let Leslie chat at you for a minute now:
Hey everybody!!! Wow, where do I start?? We haven't updated the blog in such long time really only because so many happy, positive things have been happening, and so quickly!! (Hard to keep up). This past month has been awesome. Mark's strength is just coming back so quickly, it's quite astonishing. I'm so proud of him. We even had our first restaurant dinner this past week. We went to Bella Notte on Grand Ave. and went on a real live date and everything!! It was awesome because we chose to do that on a Wednesday night so that it would be less crowded. Mark even drove; and it was the first time I've sat in the passenger seat, while he was driving, all year. I got to hold his hand again, while he drove, and we talked about our day, (one of my favorite things). It was really a nice, lovely, precious moment.
All week last week, he's gotten up with me in the morning, and has driven me to the el stop; and to see him so excited and happy to do that, is so cool. "It's an independence thing" he tells me. That's fine with me. As long as he can prove to me that he's not in any pain or exhaustion while doing it, I'll support it. ;) I try my best to keep him out of grocery stores too; but man, it's tough to do with this guy!! He LOVES being in grocery stores!!! I think it's the cook in him...well, I know it is. He loves being at close range of "great and interesting ingredients" at any given time, so I try my best to keep the house stocked with "interesting ingredients" so he can do his culinary creations as he likes. At the beginning of last week, I stopped by Whole Foods (a.k.a. "Whole Paycheck"), to buy these interesting ingredients so that I could keep as many of them as organic as possible (part of keeping people in cancer treatment healthy is consuming as organically as possible). While sorta pricey, it was great fun because my only instruction from Mark was "just buy anything you think looks good or interesting, and I'll come up with some way to cook it for us". How cool is that?? All in the last week he's made a delicious pot roast and root vegetables; grilled salmon with pineapple and yellow rice; and an awesome bbq'd pulled pork loin on a fresh french roll with outstanding mashed potatoes and a seared tuna steak with brussel sprouts...oh AND grilled pork chops with fresh fennel and apple. I mean, this dude can throw DOWN in the kitchen!! I think the cooking and the kitchen keeps him sane...and very very happy. How lucky am I that I get to reap the rewards of that?? It's pretty sweet.
So yes, we are taking advantage of this "healthy time"; and are gearing up for the journey of the transplant. The docs say it will happen within the next month. We're not totally sure when exactly; just within the next four weeks or so. So every single moment of strength, and happiness and any amount of laughter and levity is what's keeping both of us on track. And it's so nice that the trach's gone, the tubes are gone, the wound that the chest tube left has healed nicely, and I'm free to lay on him when we fall asleep without hurting him. You can bet the farm that those are the moments that I make sure to notice and appreciate more than anything.
We're on our way everybody. Thanks again for all of your kind words and encouragement. ALL OF THEM mean the world to both of us.
Love to you all.
-Leslie & Mark
Whatever sort of prescription plan that I'm on, courtesy of my medical team, with the Campath leading the way, is working wonders for me. My blood counts are that of a healthy individual, extremely healthy even. I just have to remain healthy for these next few weeks so I can make it through the hell of feverish days stuck in a hospital bed.
I'm going to let Leslie chat at you for a minute now:
Hey everybody!!! Wow, where do I start?? We haven't updated the blog in such long time really only because so many happy, positive things have been happening, and so quickly!! (Hard to keep up). This past month has been awesome. Mark's strength is just coming back so quickly, it's quite astonishing. I'm so proud of him. We even had our first restaurant dinner this past week. We went to Bella Notte on Grand Ave. and went on a real live date and everything!! It was awesome because we chose to do that on a Wednesday night so that it would be less crowded. Mark even drove; and it was the first time I've sat in the passenger seat, while he was driving, all year. I got to hold his hand again, while he drove, and we talked about our day, (one of my favorite things). It was really a nice, lovely, precious moment.
All week last week, he's gotten up with me in the morning, and has driven me to the el stop; and to see him so excited and happy to do that, is so cool. "It's an independence thing" he tells me. That's fine with me. As long as he can prove to me that he's not in any pain or exhaustion while doing it, I'll support it. ;) I try my best to keep him out of grocery stores too; but man, it's tough to do with this guy!! He LOVES being in grocery stores!!! I think it's the cook in him...well, I know it is. He loves being at close range of "great and interesting ingredients" at any given time, so I try my best to keep the house stocked with "interesting ingredients" so he can do his culinary creations as he likes. At the beginning of last week, I stopped by Whole Foods (a.k.a. "Whole Paycheck"), to buy these interesting ingredients so that I could keep as many of them as organic as possible (part of keeping people in cancer treatment healthy is consuming as organically as possible). While sorta pricey, it was great fun because my only instruction from Mark was "just buy anything you think looks good or interesting, and I'll come up with some way to cook it for us". How cool is that?? All in the last week he's made a delicious pot roast and root vegetables; grilled salmon with pineapple and yellow rice; and an awesome bbq'd pulled pork loin on a fresh french roll with outstanding mashed potatoes and a seared tuna steak with brussel sprouts...oh AND grilled pork chops with fresh fennel and apple. I mean, this dude can throw DOWN in the kitchen!! I think the cooking and the kitchen keeps him sane...and very very happy. How lucky am I that I get to reap the rewards of that?? It's pretty sweet.
So yes, we are taking advantage of this "healthy time"; and are gearing up for the journey of the transplant. The docs say it will happen within the next month. We're not totally sure when exactly; just within the next four weeks or so. So every single moment of strength, and happiness and any amount of laughter and levity is what's keeping both of us on track. And it's so nice that the trach's gone, the tubes are gone, the wound that the chest tube left has healed nicely, and I'm free to lay on him when we fall asleep without hurting him. You can bet the farm that those are the moments that I make sure to notice and appreciate more than anything.
We're on our way everybody. Thanks again for all of your kind words and encouragement. ALL OF THEM mean the world to both of us.
Love to you all.
-Leslie & Mark
Saturday, March 6, 2010
Update on a Sunny Saturday
This week has been at bit rough on my psyche, body and I'm sure my friends as well. I found out Monday that I contracted pneumonia again, only to be told that it was half-expected with the Campath wreaking havoc on my immune system. So I just had to go along with the standard plan of rest, lots of fluids and keep on the antibiotics that I'm already on. Thursday was my only day away from the hospital, but I was far too wiped out and tired to actually accomplish much. Then Thursday night, I got happy again.
In creation, I find happiness.
Meaning that, I find happiness when I create something. Thursday night's case was a simple dinner; yet still a creation from raw materials. And in that happiness, I find strength to heal myself and feel less sorry for myself that "I'm sick" "I'm tired" and the other whines I generate while I'm sitting on my now-bony ass. You'd think that since my ass is bony now and it hurts to sit on things that are not extra cushioned that I would actually get and create, but, seriously, I was tired. And you all know, I am sick. But I am not incapable. As a matter of fact, I can now dress myself without assistance. Quite a proud moment for someone that just re-learned how to walk. And(!) I can wear shoes now that my feet don't swell up to twice their size anymore. Top all that off with two good things that happened today: I put on jeans (actual pants!) for the first time since the 3rd of January. Of course, Leslie had to dig around in the basement for a pair that would actually fit me, but she managed to located the one pair I had stashed for that occasion when I would drop 40lbs in two months while undergoing treatment for leukemia. Good thing I plan ahead like that.
The other good news is my insurance company has granted coverage for my upcoming Allo Stem Cell Infusion Transplant, which I found out from a letter in the good ol' US mail. So the Doctors can really start moving forward on that front, and I just have to remain healthy until the procedure goes down.
Now if I can only get strong enough to start actually creating more things than dinners, although my dinners do get plenty of compliments, I'd sure like to create more things that last longer than a few hours. Like those T-shirts I promised Bill S. and the rest of Jordan Youth. Funny how a near-death experience can make someone less of a perfectionist; what seemed to me to be an error on the printing screen in December certainly would be printed today and accepted as part of the handmade charm. Punk Rock live on.
Rock an Roll y'all, Rock and Roll.
Oh! and for those that think it was "warm" today in Chicago, I can tell you with all honesty that it really wasn't. I lasted ten minutes outside before I was cold and I still had a winter jacket on! remember this: 50º is cold. If you believe that it is not, go ahead and set your thermostat to 50º. I'm telling you COLD. Sunny afternoon or not.
In creation, I find happiness.
Meaning that, I find happiness when I create something. Thursday night's case was a simple dinner; yet still a creation from raw materials. And in that happiness, I find strength to heal myself and feel less sorry for myself that "I'm sick" "I'm tired" and the other whines I generate while I'm sitting on my now-bony ass. You'd think that since my ass is bony now and it hurts to sit on things that are not extra cushioned that I would actually get and create, but, seriously, I was tired. And you all know, I am sick. But I am not incapable. As a matter of fact, I can now dress myself without assistance. Quite a proud moment for someone that just re-learned how to walk. And(!) I can wear shoes now that my feet don't swell up to twice their size anymore. Top all that off with two good things that happened today: I put on jeans (actual pants!) for the first time since the 3rd of January. Of course, Leslie had to dig around in the basement for a pair that would actually fit me, but she managed to located the one pair I had stashed for that occasion when I would drop 40lbs in two months while undergoing treatment for leukemia. Good thing I plan ahead like that.
The other good news is my insurance company has granted coverage for my upcoming Allo Stem Cell Infusion Transplant, which I found out from a letter in the good ol' US mail. So the Doctors can really start moving forward on that front, and I just have to remain healthy until the procedure goes down.
Now if I can only get strong enough to start actually creating more things than dinners, although my dinners do get plenty of compliments, I'd sure like to create more things that last longer than a few hours. Like those T-shirts I promised Bill S. and the rest of Jordan Youth. Funny how a near-death experience can make someone less of a perfectionist; what seemed to me to be an error on the printing screen in December certainly would be printed today and accepted as part of the handmade charm. Punk Rock live on.
Rock an Roll y'all, Rock and Roll.
Oh! and for those that think it was "warm" today in Chicago, I can tell you with all honesty that it really wasn't. I lasted ten minutes outside before I was cold and I still had a winter jacket on! remember this: 50º is cold. If you believe that it is not, go ahead and set your thermostat to 50º. I'm telling you COLD. Sunny afternoon or not.
Sunday, February 28, 2010
Million-Dollar Man
Baby Steps.
I've got to take baby steps. My impatience with my progress is unwarranted yet I still have to force myself to slow down and take those baby steps. I want to be healthy NOW and have a hard time getting through the little things that will get me back into a reasonable body. Right now, I'm all skinny and bony and uncomfortable in almost any position. Too weak to run, too tired to workout very long and too impatient to wait.
This morning, I total all of my health claims and was shocked at how fast you can run up a million dollar claim. Apparently all this great treatment I've been receiving doesn't come cheap. The total as of this morning was $1,013,789. That's a lot of money to rack in just two months, considering I slept through three weeks of that. Good thing I've got a great insurance plan. Makes me feel seriously like Lee Majors because I've got two more months to go, a Stem-cell transfusion ahead of me and corresponding three-week hospital stay. Let's just hope it all goes smoothly so I don't end up in life-long debt.
I'm feeling good today, this Sunday morning, as the house is quiet, the animals are still sleepy, Leslie is sleeping in, Rob is sleeping in and I've got a breakfast in me and time to sort out my thoughts. Now I can work my legs a little bit, soak my feet and wait for the day to unfold. This is the life of a million-dollar man.
I've got to take baby steps. My impatience with my progress is unwarranted yet I still have to force myself to slow down and take those baby steps. I want to be healthy NOW and have a hard time getting through the little things that will get me back into a reasonable body. Right now, I'm all skinny and bony and uncomfortable in almost any position. Too weak to run, too tired to workout very long and too impatient to wait.
This morning, I total all of my health claims and was shocked at how fast you can run up a million dollar claim. Apparently all this great treatment I've been receiving doesn't come cheap. The total as of this morning was $1,013,789. That's a lot of money to rack in just two months, considering I slept through three weeks of that. Good thing I've got a great insurance plan. Makes me feel seriously like Lee Majors because I've got two more months to go, a Stem-cell transfusion ahead of me and corresponding three-week hospital stay. Let's just hope it all goes smoothly so I don't end up in life-long debt.
I'm feeling good today, this Sunday morning, as the house is quiet, the animals are still sleepy, Leslie is sleeping in, Rob is sleeping in and I've got a breakfast in me and time to sort out my thoughts. Now I can work my legs a little bit, soak my feet and wait for the day to unfold. This is the life of a million-dollar man.
Monday, February 22, 2010
When Doctors Do Happy Dances
Feb. 22, 2010
Leslie here!!! Hey everybody!! So I'm back to (somewhat) of a normal routine; though I've been reorganizing my commutes/day/life/etc. so that I can be near Mark to help out around the house and help with his recovery. It's going well and (for the most part), Mark is an outstanding patient. HE may think that his progress isn't that great, but let me tell you, I feel like I've got my man back!! Yeah, he walks around a little slow, but so what...HE'S WALKING...and joking, and laughing and complaining and being silly, and loving, and jeez...to me, that's fanfreakingtastic!!
So I've started to devise some household systems for him that will A. make his life much easier and help to make his environment less complicated to navigate, B. set habits in place that keep his house (and him and his visitors and myself) as germ free as possible, C. Weather he likes it or not, I'm revising his very "bachelor-esque" way of organizing his laundry.
He can't really tackle the stairs in his house, so he can't go down there to do laundry anyway, so the system is under my attack and the articles will be clean, organized and brought UPSTAIRS and actually put away in places where he can easily access them, (i.e. like drawers and closets as opposed to oddly organized piles on a table in his basement "manroom").
Yes, Mark has/had a "manroom" in his basement. For those that don't know - Manroom definition: any place that a man exiles himself to do deceidedly "manly" things like play video/computer games, hang neon beer signs, play pool or air hockey or any other "please don't put that in the dining room" type of game; a place to work on/create/build/take-apart/invent structures for various uses, i.e. a "workshop"; (and in some cases, but not Mark's, house inordinate amounts of action figures, posters and comic books).
All of Mark's computers and gadgety things WERE downstairs in his manroom, his friends (while Mark was still in the hospital), have since moved many of these things upstairs into the now "office" so that he can easily access everything; and since he used to spend the majority of his time in his manroom, his laundry-logic was to just keep all articles of clothing in the basement, organized in piles on the table so he could easily and efficiently grab what he needed. Well, times have changed and the upstairs closets are going to start getting used. :)
So yeah, he's doing amazingly well. He keeps listening to his docs, and is staying on top of all of his physical therapy and general care. The hospital shipped an enormous amount of medical supplies to his place that we've yet to find a civilized way of organizing, (they're currently just sitting in boxes in the dining room because there's really just so much of it, it's kind of overwhelming). They've even sent us a suction machine. (NOTE: people with Trach's have to get occasional suction if their lungs are producing any kind of fluid. When Mark was in the hospital we had to have this done repeatedly (like about a dozen or so times a day), and in the time that he's been home, I think I've helped him with it maybe three or four times total, which is AWESOME. I'm telling you all, that trach's days are numbered).
I've also sufficiently changed and cleaned the whole trach apparatus for him and I gotta say; you'd think it'd be more gross, but it's not at all!!! It's actually kind of interesting and cool. I think he panicked about it once, when we were cleaning it and he got his first glimpse of what it looks like without the tube in it, and it startled him a little, but it was fine. We got it cleaned and put back in; easy peasy.
What's interesting too is how the two of us have changed in the six weeks he was in the hospital. I've had no choice but to become a much more patient person; and he's now nudged the other way, and is less patient, but it's mostly with his own progress. I keep reminding him that Rome wasn't built in a day and that he's doing great. Either way, with whatever emotion that seems to come out of either one of us, we somehow inherently know how to balance each other out in a way that is so constructive. I think we make a pretty kick ass team.
His feet are still doing the fluid-retention-swollen thing; and to date, it's the most irritating thing for him. That's really why he's forced to walk so slowly; it's because his feet are at least two sizes bigger than they normally are. Oddly, the rest of him is not. At the beginning of all of this he weighed about 225; and today he's down to 206. As he expressed to me yesterday, "I can FEEL the weight falling off of me". This is odd too since, he is constantly hungry and is constantly eating. (I'm not exaggerating when I say he eats 2 breakfasts a day, 2 lunches and 2 dinners every day). We suspect this has a lot to do with the huge array of medications he's on; but I believe at today's doctor's appointment that's one of the questions on his list. Stay tuned.
He was getting a bit of cabin fever yesterday so I took him out for the first time in a while. Nowhere major, we just went to get the car washed; off to payless to see if they had shoes in his swollen-feet size (14 or 15 is what we were guessing), then off to Target and the dollar store to stock up on hand sanitizers and other essentials. He was exhausted when we got home but really happy that he'd gotten to venture out. OH, and he got to devour a Chicago-dog; he was quite honestly a very happy man, especially after that part of the day. Then even more so later on in the evening when Christian, Sandy and Jimmy came by and we watched the prelim U.S. vs. Canada Olympic Hockey game complete with pizza and wings. He was all smiles by the end of the evening.
Me? I'm discovering very domestic aspects about myself that I've never really fully explored before; and I'm finding that I like them. Shocking. Artsy-city chick likes to successfully run a household and take care of her man. Who'd a thought? It has everything to do with Mark though. If it makes him happy or more comfortable, I'm on it and I'm excited to do it. Meals, laundry, naptime, showers, medications, dressings changed, tv shows/movies, whatever...bring it on. Like I said we make a pretty great team and I'm pretty positive that we bring out the best in each other.
So onward and upward you guys. And I just got a text from Mark (and from Jimmy) telling me that today at Mark's doctor's appointment, that Dr. Odenike came by and did a happy dance about his progress; and told Mark that it "made her year" when he was released!!!
Wow. Just wow.
Love to you all.
-Leslie
Leslie here!!! Hey everybody!! So I'm back to (somewhat) of a normal routine; though I've been reorganizing my commutes/day/life/etc. so that I can be near Mark to help out around the house and help with his recovery. It's going well and (for the most part), Mark is an outstanding patient. HE may think that his progress isn't that great, but let me tell you, I feel like I've got my man back!! Yeah, he walks around a little slow, but so what...HE'S WALKING...and joking, and laughing and complaining and being silly, and loving, and jeez...to me, that's fanfreakingtastic!!
So I've started to devise some household systems for him that will A. make his life much easier and help to make his environment less complicated to navigate, B. set habits in place that keep his house (and him and his visitors and myself) as germ free as possible, C. Weather he likes it or not, I'm revising his very "bachelor-esque" way of organizing his laundry.
He can't really tackle the stairs in his house, so he can't go down there to do laundry anyway, so the system is under my attack and the articles will be clean, organized and brought UPSTAIRS and actually put away in places where he can easily access them, (i.e. like drawers and closets as opposed to oddly organized piles on a table in his basement "manroom").
Yes, Mark has/had a "manroom" in his basement. For those that don't know - Manroom definition: any place that a man exiles himself to do deceidedly "manly" things like play video/computer games, hang neon beer signs, play pool or air hockey or any other "please don't put that in the dining room" type of game; a place to work on/create/build/take-apart/invent structures for various uses, i.e. a "workshop"; (and in some cases, but not Mark's, house inordinate amounts of action figures, posters and comic books).
All of Mark's computers and gadgety things WERE downstairs in his manroom, his friends (while Mark was still in the hospital), have since moved many of these things upstairs into the now "office" so that he can easily access everything; and since he used to spend the majority of his time in his manroom, his laundry-logic was to just keep all articles of clothing in the basement, organized in piles on the table so he could easily and efficiently grab what he needed. Well, times have changed and the upstairs closets are going to start getting used. :)
So yeah, he's doing amazingly well. He keeps listening to his docs, and is staying on top of all of his physical therapy and general care. The hospital shipped an enormous amount of medical supplies to his place that we've yet to find a civilized way of organizing, (they're currently just sitting in boxes in the dining room because there's really just so much of it, it's kind of overwhelming). They've even sent us a suction machine. (NOTE: people with Trach's have to get occasional suction if their lungs are producing any kind of fluid. When Mark was in the hospital we had to have this done repeatedly (like about a dozen or so times a day), and in the time that he's been home, I think I've helped him with it maybe three or four times total, which is AWESOME. I'm telling you all, that trach's days are numbered).
I've also sufficiently changed and cleaned the whole trach apparatus for him and I gotta say; you'd think it'd be more gross, but it's not at all!!! It's actually kind of interesting and cool. I think he panicked about it once, when we were cleaning it and he got his first glimpse of what it looks like without the tube in it, and it startled him a little, but it was fine. We got it cleaned and put back in; easy peasy.
What's interesting too is how the two of us have changed in the six weeks he was in the hospital. I've had no choice but to become a much more patient person; and he's now nudged the other way, and is less patient, but it's mostly with his own progress. I keep reminding him that Rome wasn't built in a day and that he's doing great. Either way, with whatever emotion that seems to come out of either one of us, we somehow inherently know how to balance each other out in a way that is so constructive. I think we make a pretty kick ass team.
His feet are still doing the fluid-retention-swollen thing; and to date, it's the most irritating thing for him. That's really why he's forced to walk so slowly; it's because his feet are at least two sizes bigger than they normally are. Oddly, the rest of him is not. At the beginning of all of this he weighed about 225; and today he's down to 206. As he expressed to me yesterday, "I can FEEL the weight falling off of me". This is odd too since, he is constantly hungry and is constantly eating. (I'm not exaggerating when I say he eats 2 breakfasts a day, 2 lunches and 2 dinners every day). We suspect this has a lot to do with the huge array of medications he's on; but I believe at today's doctor's appointment that's one of the questions on his list. Stay tuned.
He was getting a bit of cabin fever yesterday so I took him out for the first time in a while. Nowhere major, we just went to get the car washed; off to payless to see if they had shoes in his swollen-feet size (14 or 15 is what we were guessing), then off to Target and the dollar store to stock up on hand sanitizers and other essentials. He was exhausted when we got home but really happy that he'd gotten to venture out. OH, and he got to devour a Chicago-dog; he was quite honestly a very happy man, especially after that part of the day. Then even more so later on in the evening when Christian, Sandy and Jimmy came by and we watched the prelim U.S. vs. Canada Olympic Hockey game complete with pizza and wings. He was all smiles by the end of the evening.
Me? I'm discovering very domestic aspects about myself that I've never really fully explored before; and I'm finding that I like them. Shocking. Artsy-city chick likes to successfully run a household and take care of her man. Who'd a thought? It has everything to do with Mark though. If it makes him happy or more comfortable, I'm on it and I'm excited to do it. Meals, laundry, naptime, showers, medications, dressings changed, tv shows/movies, whatever...bring it on. Like I said we make a pretty great team and I'm pretty positive that we bring out the best in each other.
So onward and upward you guys. And I just got a text from Mark (and from Jimmy) telling me that today at Mark's doctor's appointment, that Dr. Odenike came by and did a happy dance about his progress; and told Mark that it "made her year" when he was released!!!
Wow. Just wow.
Love to you all.
-Leslie
Sunday, February 21, 2010
The "looking great" factor
I've had a lot of visitors this week at home, and all of them tell me how great I'm looking. I was having a hard time with this as I never saw myself all tubed up, tied down, and nearly comatose. So All I could think was that I looked like crap with my hair all crazy, my walk that takes two minutes to leave a room, and the constant need to use the bathroom (thank you Lasisk).
So when I saw pictures of me laying on a bed with a tube in every available orifice, and read my charts about my heart nearly exploding, being coded and doped up for weeks just to keep me alive, I started to understand.
I'm lucky to be alive.
Somehow, I fought against leukemia in my sleep, now I fight against it in my waking hours with exercise and diet. Diet meaning eating whatever I can. Nonstop. Exercise means lifting two pound weights over my head, and lots of walking. I fight on and I'm just trying to stay healthy until the time comes for stem-cell transfusion (Bone Marrow Transfusion).
So all those people who tell me I look good or great, I get it now, and I thank you for your patience. I'm still working on getting better, be I'm not nearly satisfied with my progress yet.
So when I saw pictures of me laying on a bed with a tube in every available orifice, and read my charts about my heart nearly exploding, being coded and doped up for weeks just to keep me alive, I started to understand.
I'm lucky to be alive.
Somehow, I fought against leukemia in my sleep, now I fight against it in my waking hours with exercise and diet. Diet meaning eating whatever I can. Nonstop. Exercise means lifting two pound weights over my head, and lots of walking. I fight on and I'm just trying to stay healthy until the time comes for stem-cell transfusion (Bone Marrow Transfusion).
So all those people who tell me I look good or great, I get it now, and I thank you for your patience. I'm still working on getting better, be I'm not nearly satisfied with my progress yet.
Thursday, February 18, 2010
Home ain't so easy...
It has been a few days at home, and I'm still not fully acclimated. It seems that the freedoms of being home are costing me a bit more than they used to; I have a hard time getting low and getting back up. Which makes the lower cabinets nearly out of reach. And feeding the dog a spilling that she doesn't mind cleaning up.
The trip I took yesterday to the clinic for my Campath shot went fairly smoothly, but just being outside for just a few minutes stole my breath away. that was a shocker. I'm hoping that most of my trips to the clinic go so well.
Leslie is back from Detroit and helped me take my first my first shower since I don't know when. It felt so wonderful to have warm water all over me. Now it just feels good to be clean with clean hair and a shave. I feel nearly human.
Now i'm trying to work on my muscle strength, but I'm tired from just walking from one end of the house to the other, so it's very difficult to find the energy. I just want to be stronger! I look in the mirror and see the results of my long nap; my frame shows but my muscles are gone. It's plain odd to see myself in the mirror, as the hospitals are not full of them.
The food here at the house is much better; Christian cooked for me for two days and really hooked me up with solid food that I needed. Tonight Leslie is cooking, and I sure like home-cooking better that restaurant foods. I'm looking forward to tonight's meal. and the chocolate shake I'm about to make right now!
What I like about being home is the sleep I get. I like the comfort of my my couch. I like having my dog nearby, pretending she's protecting me. I like being able to watch the sun rise. I like having clothes to choose from and wear, even if they take a half-an-hour to put on. I like the 'smell' of home. I like the smell of cooking in my kitchen. I like the warmth of the radiators. I like the coolness of my own sheets.
I like being home, It's just more work than I remember. I'm very glad to have so many good friends to help me out and pitch in around this place.
The trip I took yesterday to the clinic for my Campath shot went fairly smoothly, but just being outside for just a few minutes stole my breath away. that was a shocker. I'm hoping that most of my trips to the clinic go so well.
Leslie is back from Detroit and helped me take my first my first shower since I don't know when. It felt so wonderful to have warm water all over me. Now it just feels good to be clean with clean hair and a shave. I feel nearly human.
Now i'm trying to work on my muscle strength, but I'm tired from just walking from one end of the house to the other, so it's very difficult to find the energy. I just want to be stronger! I look in the mirror and see the results of my long nap; my frame shows but my muscles are gone. It's plain odd to see myself in the mirror, as the hospitals are not full of them.
The food here at the house is much better; Christian cooked for me for two days and really hooked me up with solid food that I needed. Tonight Leslie is cooking, and I sure like home-cooking better that restaurant foods. I'm looking forward to tonight's meal. and the chocolate shake I'm about to make right now!
What I like about being home is the sleep I get. I like the comfort of my my couch. I like having my dog nearby, pretending she's protecting me. I like being able to watch the sun rise. I like having clothes to choose from and wear, even if they take a half-an-hour to put on. I like the 'smell' of home. I like the smell of cooking in my kitchen. I like the warmth of the radiators. I like the coolness of my own sheets.
I like being home, It's just more work than I remember. I'm very glad to have so many good friends to help me out and pitch in around this place.
Tuesday, February 16, 2010
Home Again Home Again, Jiggity Jig Jig
Well, I'm home again. It is extremely comforting. And a bit overwhelming. This house is huge, with so much walking required; to answer the phone, door, nature's call, to fetch myself water, etc. Regular stuff tires me easily.
What I was looking forward to was a nice hot bath so I can finally feel clean-clean. So I filled the bath, and started taking off my clothes. When I was fully naked, I was too tired to get in the tub with my weak muscles, and would have been too humiliated to ask for help to get out of the tub, because I certainly would have needed it. So I was stuck with the standard wash down, got some new clothes on and then I went to bed, falling asleep faster than I can ever remember; my bed was so comfortable! Oh sweet queen bed. I slept with my feet elevated and I slept so long my feet are nearly normal-sized this morning. Hoo-ray!
Today is Leslie's grandmother's funeral; I wish I could by her side, as I'd like to give her the support she needs. I am stuck here, though, waiting for my nurse to come by and take blood, give me instructions on how to be home and yell at me for walking around with just socks on.
Today my dog comes home; I just hope I can contain her energy.
maybe I will harness some of that energy and pick through the huge pile of stuff accumulated while I was away.
What I was looking forward to was a nice hot bath so I can finally feel clean-clean. So I filled the bath, and started taking off my clothes. When I was fully naked, I was too tired to get in the tub with my weak muscles, and would have been too humiliated to ask for help to get out of the tub, because I certainly would have needed it. So I was stuck with the standard wash down, got some new clothes on and then I went to bed, falling asleep faster than I can ever remember; my bed was so comfortable! Oh sweet queen bed. I slept with my feet elevated and I slept so long my feet are nearly normal-sized this morning. Hoo-ray!
Today is Leslie's grandmother's funeral; I wish I could by her side, as I'd like to give her the support she needs. I am stuck here, though, waiting for my nurse to come by and take blood, give me instructions on how to be home and yell at me for walking around with just socks on.
Today my dog comes home; I just hope I can contain her energy.
maybe I will harness some of that energy and pick through the huge pile of stuff accumulated while I was away.
Sunday, February 14, 2010
I'm so excited!
Here it is, my last full day (I hope) in the hospital. Yesterday, they took me off the worst of my drugs, Heparin. Every shot burned, and some nurses put that in slowly. Well no more of the worst! It is a blood thinner, and I was told that my movement (walking around) gave them reason to stop the treatment. Now, if could only get my feet down to normal size. they are still balooned and today they are painful from yesterday's walking.
I am nervous and curious about going home.
How often should I leave the house? Should I wear a mask when I do? How much will the dog affect me? When can I eat raw veggies again? How soon do I come back for the outpatient treatment?
I look forward to long bath, a good shave, and seeing my dog.
Leslie will be near Detroit, speaking at her grandmother's 'wake'. I am sure that the girl needs a better year than the one she's having.
I am nervous and curious about going home.
How often should I leave the house? Should I wear a mask when I do? How much will the dog affect me? When can I eat raw veggies again? How soon do I come back for the outpatient treatment?
I look forward to long bath, a good shave, and seeing my dog.
Leslie will be near Detroit, speaking at her grandmother's 'wake'. I am sure that the girl needs a better year than the one she's having.
Saturday, February 13, 2010
Almost Home
So they (the doctors) are trying to get me home on Monday. They have been planning with home health for delivery of oxygen, suction and I am sure other things as well. All of this seems unreal, as I've only been 'awake' for two weeks now. I've had to relearn to walk; relearn how to type; relearn how to use the phone.
Walking is the hardest and takes the most out of me, but it is funny to see nurses faces as I walk down the hallway for exercise; it is as if I was on a catwalk parading some nice new outfit designed by Coco Chanel herself.
Yesterday, Friday, they removed the dialysis tube from my neck. Which, Leslie tells me, was about 1cm thick.
The bandage just fell off in my sleep, and I was surprised to find a very small incision.
The doctors just came in to look me over. They are giving me Lasisk to help me remove extra fluids in the body, especially in my poor fat feet. When the fluids get down, I go home.
I wish I had those GI Joe feet that just pulled off and you could replace them.
Poor Leslie won't be here when I am released. Her much-loved grandmother passed away and she has to drive home to be near her family. I'm still stuck here in the hospital, but hopefully, on her return, I will be home and she can meet me there.
We shall see.
-Posted by Mark
Walking is the hardest and takes the most out of me, but it is funny to see nurses faces as I walk down the hallway for exercise; it is as if I was on a catwalk parading some nice new outfit designed by Coco Chanel herself.
Yesterday, Friday, they removed the dialysis tube from my neck. Which, Leslie tells me, was about 1cm thick.
The bandage just fell off in my sleep, and I was surprised to find a very small incision.
The doctors just came in to look me over. They are giving me Lasisk to help me remove extra fluids in the body, especially in my poor fat feet. When the fluids get down, I go home.
I wish I had those GI Joe feet that just pulled off and you could replace them.
Poor Leslie won't be here when I am released. Her much-loved grandmother passed away and she has to drive home to be near her family. I'm still stuck here in the hospital, but hopefully, on her return, I will be home and she can meet me there.
We shall see.
-Posted by Mark
Wednesday, February 10, 2010
The BEST news yet!!!!!
Feb. 10, 2010
First, I have to say I cannot even wrap my brain around how fast everything is happening!!! Check THIS out you guys:
1. Mark's chest tube was removed today (hooray!!)
2. Docs said he'll most likely be going home on Monday (holy crap!!!)
3. A smaller trach was put in today to replace the larger one he had in, and in two weeks will be totally removed, and the hole in his throat sewn up!!!
4. MARK'S SISTER JEANNE IS A FULL MATCH FOR HIS BONE MARROW/STEM CELL TRANSPLANT!!!!!!!!!!!!!!!!!
I'm shaking, I'm so happy!!!
TONS of Love,
Leslie & Mark
First, I have to say I cannot even wrap my brain around how fast everything is happening!!! Check THIS out you guys:
1. Mark's chest tube was removed today (hooray!!)
2. Docs said he'll most likely be going home on Monday (holy crap!!!)
3. A smaller trach was put in today to replace the larger one he had in, and in two weeks will be totally removed, and the hole in his throat sewn up!!!
4. MARK'S SISTER JEANNE IS A FULL MATCH FOR HIS BONE MARROW/STEM CELL TRANSPLANT!!!!!!!!!!!!!!!!!
I'm shaking, I'm so happy!!!
TONS of Love,
Leslie & Mark
Tuesday, February 9, 2010
Just sharing a photo with you...
I meant to post this shot of Mark in the entry that I posted earlier today but got sidetracked. Here it is...I call this one "Mark Vancura: Kicking TPLL's ass one leukemia cell at a time"
(even with that feeding tube, he's just so handsome!!!)
(even with that feeding tube, he's just so handsome!!!)
A New Day, In (yet another) New Room
Tuesday Feb. 9, 2010
The first non ICU room they moved Mark to was smaller than small; and with between the number of visitors he gets, the cot they have in there for me, and any machines...it was a tight squeeze in 672. On Friday night they moved us just down the hall to TN659, MUCH MUCH bigger.
Here's what's up:
Mark has been doing so incredibly well that any free time I have, I'm really just spending it with him, so I've been a little lax on the blogging. The rate at which his condition is improving has definitely been sped up, (mostly by him and his sheer determination). Both of his catheters have been removed, all but 1 IV has been removed, (he's still got his antibiotic going, which is actually part of his chemo/bio-therapy treatment), his feeding tube has been removed, and at this point, the only tube he's got left is the chest tube which they've been talking about removing within the next couple of days.
His doctors are very excited about his progress, even Dr. Odenike did a little happy dance when she stopped by to visit a couple of days ago. Everyone is really happy. Best news of all? His white count, (at last record), was at 11. Reminder: a "healthy" count is anywhere from 3.5 to 11; so we're well on our way!!! The plan now however, is that the oncologists plan on "bottoming out" his white count before his transplant, so that they're basically working with a totally clean slate. And the lower his white count goes, the more susceptible he will be to outside illness and infection; so we all have to be extra diligent in keeping healthy if we're going to be around him.
Once his white count is where they want it to be, he'll have a bone marrow biopsy done again to test to see if any leukemia cells are still present. If they are Campath continues until it's eradicated, once that happens, he will most likely be sent home for a handful of days to rest before his transplant. As one of his oncologists explained to me, "he will be very very weak, and his immune system so compromised, we'd rather he be at home than in a hospital where cause for infection is greater than in his own living space. Once he's at home for a handful of days, and rests and gets stronger, we'll bring him back in for the transplant."
They've informed us that once he does go back in for the transplant, that he'll definitely be in the hospital for a sustained amount of time; (an exact amount of time isn't possible to predict now, this depends on many different factors).
As we stand, He's still getting his dialysis treatments; but his kidneys are definitely working, just not yet at their full capacity. (The docs expected this). They're a very slow organ to kick back in to do their job; so it'll be some time before we see any significant progress with them.
Mark's Campath schedule has gone back to the Mon, Wed, Fri doses, rather than the every other day dose. He's also now receiving physical therapy a few times per week to get his strength back; which he has quite a bit since leaving ICU, and it's getting increasingly better each day. You guys should see him, he's walking around his room now, putting himself in chairs, and exercising his legs on his own. It's pretty awesome.
His lungs are so so so SOOOO much better too!!! He's made it through full days without the use of oxygen at all, all the while maintaining a mid 90's pulse ox!!!! How's that for progress??? He's also dealing with his trach very well too; his nurses come in to suction him several times a day and he uses his little "speaking" attachment on the end of it sometimes. I can tell it annoys him though, so most of the time, he just pops it off and covers the trach with his finger to talk to you. (Note: lots of people have asked me if he sounds like that character on South Park. LOL. No, he does not. He's got his own voice, no mechanical-sounding voice at all, it's Mark's voice, just with slightly less volume so you have to be kind of close to him to hear). :)
The trach's days are numbered I'm assuming as well, so everyone keep your fingers crossed and positive vibes coming...he's WELL on his road of recovery.
Once again, thank you to everyone that's stopped by, brought food (Jeanne Ward, you are an angel), sent positive texts and calls, and emails and everything else. You're all very much as in our hearts and thoughts as we are in yours. Thank you.
Lots of love to you all.
Very Sincerely,
Leslie & Mark
xoxoxo
The first non ICU room they moved Mark to was smaller than small; and with between the number of visitors he gets, the cot they have in there for me, and any machines...it was a tight squeeze in 672. On Friday night they moved us just down the hall to TN659, MUCH MUCH bigger.
Here's what's up:
Mark has been doing so incredibly well that any free time I have, I'm really just spending it with him, so I've been a little lax on the blogging. The rate at which his condition is improving has definitely been sped up, (mostly by him and his sheer determination). Both of his catheters have been removed, all but 1 IV has been removed, (he's still got his antibiotic going, which is actually part of his chemo/bio-therapy treatment), his feeding tube has been removed, and at this point, the only tube he's got left is the chest tube which they've been talking about removing within the next couple of days.
His doctors are very excited about his progress, even Dr. Odenike did a little happy dance when she stopped by to visit a couple of days ago. Everyone is really happy. Best news of all? His white count, (at last record), was at 11. Reminder: a "healthy" count is anywhere from 3.5 to 11; so we're well on our way!!! The plan now however, is that the oncologists plan on "bottoming out" his white count before his transplant, so that they're basically working with a totally clean slate. And the lower his white count goes, the more susceptible he will be to outside illness and infection; so we all have to be extra diligent in keeping healthy if we're going to be around him.
Once his white count is where they want it to be, he'll have a bone marrow biopsy done again to test to see if any leukemia cells are still present. If they are Campath continues until it's eradicated, once that happens, he will most likely be sent home for a handful of days to rest before his transplant. As one of his oncologists explained to me, "he will be very very weak, and his immune system so compromised, we'd rather he be at home than in a hospital where cause for infection is greater than in his own living space. Once he's at home for a handful of days, and rests and gets stronger, we'll bring him back in for the transplant."
They've informed us that once he does go back in for the transplant, that he'll definitely be in the hospital for a sustained amount of time; (an exact amount of time isn't possible to predict now, this depends on many different factors).
As we stand, He's still getting his dialysis treatments; but his kidneys are definitely working, just not yet at their full capacity. (The docs expected this). They're a very slow organ to kick back in to do their job; so it'll be some time before we see any significant progress with them.
Mark's Campath schedule has gone back to the Mon, Wed, Fri doses, rather than the every other day dose. He's also now receiving physical therapy a few times per week to get his strength back; which he has quite a bit since leaving ICU, and it's getting increasingly better each day. You guys should see him, he's walking around his room now, putting himself in chairs, and exercising his legs on his own. It's pretty awesome.
His lungs are so so so SOOOO much better too!!! He's made it through full days without the use of oxygen at all, all the while maintaining a mid 90's pulse ox!!!! How's that for progress??? He's also dealing with his trach very well too; his nurses come in to suction him several times a day and he uses his little "speaking" attachment on the end of it sometimes. I can tell it annoys him though, so most of the time, he just pops it off and covers the trach with his finger to talk to you. (Note: lots of people have asked me if he sounds like that character on South Park. LOL. No, he does not. He's got his own voice, no mechanical-sounding voice at all, it's Mark's voice, just with slightly less volume so you have to be kind of close to him to hear). :)
The trach's days are numbered I'm assuming as well, so everyone keep your fingers crossed and positive vibes coming...he's WELL on his road of recovery.
Once again, thank you to everyone that's stopped by, brought food (Jeanne Ward, you are an angel), sent positive texts and calls, and emails and everything else. You're all very much as in our hearts and thoughts as we are in yours. Thank you.
Lots of love to you all.
Very Sincerely,
Leslie & Mark
xoxoxo
Subscribe to:
Posts (Atom)