I certainly have a busy week ahead of me.
Besides the remaining papers that need to be written, I have a few long days at Sloan.
Tuesday, I'll be at Sloan getting a medicine called Rituximab. It's a monoclonal antibody which is used to treat B-cell non-Hodgkin's lymphoma.
But Nick, I thought all the pre-transplant chemo and radiation got rid of your cancer?
That's a very good question! While we have no reason to think the cancer is back, this is being done as a preventative measure. This medicine specifically targets B-Cells (a type of white blood cell) and triggers the cell to die.
Why do we want to do that?
Because my cancer was a B-Cell cancer, the thought process is to suppress the B-Cells in my body for a little longer and allow the donor marrow to get stronger. The hope is that any of my body's own B-Cells that were left will be eliminated allowing only new donor B-Cells to grow.
We'll do this once ever other month... not sure for how long
On Tuesday, my doctor will also do our first T-Cell count!
It will only be 34 days out, but what the heck.
Thursday...
On Thursday we have my first set of scans since transplant. Hooray Hooray!
Busy week ahead, so in preparation it's time to get some sleep!
Sunday, April 27, 2008
Wednesday, April 23, 2008
I Love The Marist Music Department
So this past Sunday was the Spring Music Concert up at Marist.
I was floored when I heard they dedicated the concert to me!!
Here's a page from the program...
I was floored when I heard they dedicated the concert to me!!
Here's a page from the program...
(Click the image for a larger version)
Sunday, April 20, 2008
One week...
So I've been home for an entire week...
Things are getting better every day. A full night's rest every night for the past 6 nights has certainly helped. My appetite is certainly improving, however my taste is still lacking. Little by little!
Because of the beautiful weather I've been trying to go for walks, and Friday morning I hit the driving range. Being a bit too ambitious, I got myself a large bucket of balls... which ends up being 135 golf balls. Ya know, you don't realize how many 135 golf balls is until they're staring you in the face. I certainly bit off more then I could chew. Not realizing how much energy I didn't have, I had to take a break about every 10 balls. None the less, it was good to get out into the fresh air.
Yesterday morning when I woke up was a different story. Those golf balls did a number on me. My legs, back, side, shoulders, neck, and arms were KILLING me. Soooo sore. haha, serves me right. Next time perhaps a small bucket of balls. :-)
I'm also making a pretty good dent in my coursework and writing a paper as we speak. So before I get too distracted, let me get back to that.
Hasta la pasta!
Things are getting better every day. A full night's rest every night for the past 6 nights has certainly helped. My appetite is certainly improving, however my taste is still lacking. Little by little!
Because of the beautiful weather I've been trying to go for walks, and Friday morning I hit the driving range. Being a bit too ambitious, I got myself a large bucket of balls... which ends up being 135 golf balls. Ya know, you don't realize how many 135 golf balls is until they're staring you in the face. I certainly bit off more then I could chew. Not realizing how much energy I didn't have, I had to take a break about every 10 balls. None the less, it was good to get out into the fresh air.
Yesterday morning when I woke up was a different story. Those golf balls did a number on me. My legs, back, side, shoulders, neck, and arms were KILLING me. Soooo sore. haha, serves me right. Next time perhaps a small bucket of balls. :-)
I'm also making a pretty good dent in my coursework and writing a paper as we speak. So before I get too distracted, let me get back to that.
Hasta la pasta!
Monday, April 14, 2008
Home Sweet Home!!!
I'm writing this post to you from the comfort of my own home!!
That's right! at 18 days they let me out for good behavior!
It feels so good to here. My couch, my bed... my everything!
So what lies ahead?
I'll be returning to Sloan twice a week for checkups and such and trying to get back my energy. (This includes my appetite.) I also have a huge buttload of coursework I have to get done, after all I still plan to graduate!
My immune system is still weak, so now I'm only in a semi-quartine state. I can go for walks outside, but crowded public places are off limits. People can come visit, but only a few at a time and they gotta be super healthy. Things will remain this way for a while, at least until June when they recheck my immune system. Unfortunately, after puberty the immune system isn't able to reconstitute itself as quickly. These restrictions may very well last in september, perhaps later! But as my numbers improve (they check every 2 months) they'll lift restrictions.
Other then that I just want to thank everyone again for all their thoughts, prayers, support, and encourgament through this whole time. It's been such a blessing!!!
Till next time!
That's right! at 18 days they let me out for good behavior!
It feels so good to here. My couch, my bed... my everything!
So what lies ahead?
I'll be returning to Sloan twice a week for checkups and such and trying to get back my energy. (This includes my appetite.) I also have a huge buttload of coursework I have to get done, after all I still plan to graduate!
My immune system is still weak, so now I'm only in a semi-quartine state. I can go for walks outside, but crowded public places are off limits. People can come visit, but only a few at a time and they gotta be super healthy. Things will remain this way for a while, at least until June when they recheck my immune system. Unfortunately, after puberty the immune system isn't able to reconstitute itself as quickly. These restrictions may very well last in september, perhaps later! But as my numbers improve (they check every 2 months) they'll lift restrictions.
Other then that I just want to thank everyone again for all their thoughts, prayers, support, and encourgament through this whole time. It's been such a blessing!!!
Till next time!
Sunday, April 13, 2008
Tick Tock!!
Hey sports fans!
Everything here has been going great.
THEIR SENDING ME HOME TOMORROW!!
(knock on wood)
Today they've disconnected me from everything so I'm a free man!
I still don't have much of an appetite, and so I've been dropping weight. Doctor wants me to drink 3 liters of anything with substance (read: electrolytes) to try to offset the not eating.
Mom is bring me a few chicken cutlets from home today, maybe that will peek my interest!
Other then that, I've been feeling good! just generally tired. That's a combination of everything going on plus the not eating, but with time everything will return! Energy and Appetite.
It's funny, I've been here since March 27th. Looking back, that time has flew by! But knowing I'm going home tomorrow is making this weekend take forever! I'm so close!!!!
Everything here has been going great.
THEIR SENDING ME HOME TOMORROW!!
(knock on wood)
Today they've disconnected me from everything so I'm a free man!
I still don't have much of an appetite, and so I've been dropping weight. Doctor wants me to drink 3 liters of anything with substance (read: electrolytes) to try to offset the not eating.
Mom is bring me a few chicken cutlets from home today, maybe that will peek my interest!
Other then that, I've been feeling good! just generally tired. That's a combination of everything going on plus the not eating, but with time everything will return! Energy and Appetite.
It's funny, I've been here since March 27th. Looking back, that time has flew by! But knowing I'm going home tomorrow is making this weekend take forever! I'm so close!!!!
Thursday, April 10, 2008
Rough Night...
Hey all
Had a bit of a rough night last night. Spiked a small fever with a headache and some vomiting. But my fever didn't go above 38.5 C so the doctors aren't really worried.
Besides, the nurses tell me you can't go through transplant without spiking a fever at least once!
Other then that I've been feeling pretty exhausted and spent most of the day in bed. However over the past hour I've been feeling increasingly better and more lively. Feeling more normal :-)
While this energy lasts I thought I better update my adoring fans.
Have a great night!
Had a bit of a rough night last night. Spiked a small fever with a headache and some vomiting. But my fever didn't go above 38.5 C so the doctors aren't really worried.
Besides, the nurses tell me you can't go through transplant without spiking a fever at least once!
Other then that I've been feeling pretty exhausted and spent most of the day in bed. However over the past hour I've been feeling increasingly better and more lively. Feeling more normal :-)
While this energy lasts I thought I better update my adoring fans.
Have a great night!
Tuesday, April 08, 2008
There's a Great Big Beautiful Tomorrow
...Shining at the end of every day!
There's a great big beautiful tomorrow.
And tomorrow is just a dream away!
(That was for all my Disney fans out there)
So today was another good day!
We got the full dose of the IVIG without any reaction. (score!)
My doctor also started stepping me down on some meds and moving others to pill.
We are on quite a roll.
On another note, I've started to eat and drink more and more. Unfortunately I really can't taste anything. The mucositis has messed up my taste buds big time. Ya know how you feel when you drink coffee that's too hot? I essentially feel that numbness 24/7. No worries, normal taste will return within a few weeks.
All in all we're doing well!
Thankfully, I only have one more dose of benadryl scheduled for 8 o'clock tonight. So I thought I would use these few precious moments of lucidity to update my blog!
I just wanna thank everyone for all their encouragement and support through everything.
Your cards, your blood, and especially your prayers have really helped to ease these rough waters for me and my family!
There's a great big beautiful tomorrow.
And tomorrow is just a dream away!
(That was for all my Disney fans out there)
So today was another good day!
We got the full dose of the IVIG without any reaction. (score!)
My doctor also started stepping me down on some meds and moving others to pill.
We are on quite a roll.
On another note, I've started to eat and drink more and more. Unfortunately I really can't taste anything. The mucositis has messed up my taste buds big time. Ya know how you feel when you drink coffee that's too hot? I essentially feel that numbness 24/7. No worries, normal taste will return within a few weeks.
All in all we're doing well!
Thankfully, I only have one more dose of benadryl scheduled for 8 o'clock tonight. So I thought I would use these few precious moments of lucidity to update my blog!
I just wanna thank everyone for all their encouragement and support through everything.
Your cards, your blood, and especially your prayers have really helped to ease these rough waters for me and my family!
Monday, April 07, 2008
The Record...
Just a quick note...
I just saw the doctor and pleaded with her to let me out for good behavior :-)
She said her "record" to send someone home is 19 days post transplant.
Let's make or break that record!
In order for me to go home I have to be off all my antibiotics and pain meds, sustain these blood counts without any help, and most importantly be eating and drinking. As long as my counts stay on the right path we'll begin to peel away the antibiotics tomorrow.
I just saw the doctor and pleaded with her to let me out for good behavior :-)
She said her "record" to send someone home is 19 days post transplant.
Let's make or break that record!
In order for me to go home I have to be off all my antibiotics and pain meds, sustain these blood counts without any help, and most importantly be eating and drinking. As long as my counts stay on the right path we'll begin to peel away the antibiotics tomorrow.
We Have Lift Off!!!
BAM!!!!
Ladies and gentlemen... Today's Counts...
::drum roll:
White Blood Count - 7.1!!
Now that's what I'm talking about!
The rest of my counts are ok too!
Back to sleep for me. I can't wait for the doctor to do rounds this morning. Let's get me home!! :-)
Ladies and gentlemen... Today's Counts...
::drum roll:
White Blood Count - 7.1!!
Now that's what I'm talking about!
The rest of my counts are ok too!
Back to sleep for me. I can't wait for the doctor to do rounds this morning. Let's get me home!! :-)
Sunday, April 06, 2008
Houston, We have counts!
Hey everyone!
My counts are on the move!
My White blood count has moved from .4 to 2.5 today.
It may be a fair assessment to say I'll have some full strong counts in by Wednesday.
When I see the doctor tomorrow I'm gonna ask her what I need to do to get outta dodge!
In the mean time my 10AM dose of benedryl is telling me it's time for a nap.
Adios!
My counts are on the move!
My White blood count has moved from .4 to 2.5 today.
It may be a fair assessment to say I'll have some full strong counts in by Wednesday.
When I see the doctor tomorrow I'm gonna ask her what I need to do to get outta dodge!
In the mean time my 10AM dose of benedryl is telling me it's time for a nap.
Adios!
Saturday, April 05, 2008
Chugging Along...
Hey Everyone!
Today starts dose #3 of the ATG. It should be an uneventful day as I met the second dose with no problems or issues.
Now more important issues...
White Blood Count:
Thursday - 0.1
Friday - 0
Saturday - 0.4
See it!!! It's starting!! The numbers don't lie people! I also feel the marrow working. I've been on the GCSF medication and I'm feeling some bone pain in my lower back and legs. All signs point to new growing marrow!!
Today starts dose #3 of the ATG. It should be an uneventful day as I met the second dose with no problems or issues.
Now more important issues...
White Blood Count:
Thursday - 0.1
Friday - 0
Saturday - 0.4
See it!!! It's starting!! The numbers don't lie people! I also feel the marrow working. I've been on the GCSF medication and I'm feeling some bone pain in my lower back and legs. All signs point to new growing marrow!!
Thursday, April 03, 2008
Keep on Truckin...
Here we are, Thursday! So far so good.
Today I'm getting the second dose of ATG (Anti-thymocyte globulin.) This medication is used to prevent transplant rejection. Just like the IVIG from the other day, there is the possibility of having a reaction to this drug. So with this drug I'm not just premedicated with benedryl and tylneoyl, but also with celebrex and steroids. All those drugs do wonders... on Tuesday when i got the first dose, I only ran a small (100.4) fever, so they were able to finish giving me the dose without any problems.
For the second dose, their infusing the medicine a little slower which should prevent having any reaction at all. All in all I'll receive this medication four times. Every other day since Tuesday (Tuesday, Thursday, Saturday, Monday) Now, remember all those premeds I've been given to prevent against any reaction for this medication? Well, I actually receive the benedryl around the clock! Every 6 hours! They even continue the benedryl for 24 hours after the actual medicine finishes. So in other words, I have been and will be in a consistant benedryl comma until Tuesday.
It's amazing... 5 minutes after giving me the benedryl I can barely keep my eyes open. I'm finding this as a blessing in disguise. I've been having trouble sleeping and this pretty much keeps me napping for 18 hours a day.
Speaking of which, a new dose has just kicked in. So before I pass out onto my keyboard I must be off!
BUT BEFORE I GO...
We're starting to see some growth! Today I had a .1 white count. The doctor's say it will probably drop back down to zero tomorrow, but that means the process is starting. To further encourage my new marrow the doctors will start me on GCSF (Remember the medication to help encourage white cell growth) and continue that for next week.
Things are looking good people!
And now... Good night!
Today I'm getting the second dose of ATG (Anti-thymocyte globulin.) This medication is used to prevent transplant rejection. Just like the IVIG from the other day, there is the possibility of having a reaction to this drug. So with this drug I'm not just premedicated with benedryl and tylneoyl, but also with celebrex and steroids. All those drugs do wonders... on Tuesday when i got the first dose, I only ran a small (100.4) fever, so they were able to finish giving me the dose without any problems.
For the second dose, their infusing the medicine a little slower which should prevent having any reaction at all. All in all I'll receive this medication four times. Every other day since Tuesday (Tuesday, Thursday, Saturday, Monday) Now, remember all those premeds I've been given to prevent against any reaction for this medication? Well, I actually receive the benedryl around the clock! Every 6 hours! They even continue the benedryl for 24 hours after the actual medicine finishes. So in other words, I have been and will be in a consistant benedryl comma until Tuesday.
It's amazing... 5 minutes after giving me the benedryl I can barely keep my eyes open. I'm finding this as a blessing in disguise. I've been having trouble sleeping and this pretty much keeps me napping for 18 hours a day.
Speaking of which, a new dose has just kicked in. So before I pass out onto my keyboard I must be off!
BUT BEFORE I GO...
We're starting to see some growth! Today I had a .1 white count. The doctor's say it will probably drop back down to zero tomorrow, but that means the process is starting. To further encourage my new marrow the doctors will start me on GCSF (Remember the medication to help encourage white cell growth) and continue that for next week.
Things are looking good people!
And now... Good night!
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