Greetings from the hospital everyone. Hopefully this will be the last posting from this place…only time will tell. I am supposed to be released today which cannot come soon enough. At this point, there isn’t a whole lot that can keep me from leaving so I should be home bound by mid afternoon. Even though I have only been here for roughly 20 days on this stint, it has seemed like a lifetime and has been by far the most challenging. I can’t quite put my finger on as to why, but to say I am happy to leave is a huge understatement.
I know one huge thing that I will not miss is the menu, and the food that goes along with it. It’s funny because I have a very strong appetite which the doctors love, but I just can’t stomach this food anymore and as a result, my weight has dropped to 153 pounds, the lowest since my diagnosis. I can usually get a big breakfast down, but come lunch time and dinner time I struggle. I’m pretty much living on protein shakes, bars and drinks which doesn’t seem to be doing anything for me from a weight perspective. My guess is I will put this weight back on in no time upon my release.
So my departure plan couldn’t be better. Evey and I will leave the hospital today and head back up to my Dad’s house for the next 6 days. Then on the 13th, we will be moving into our new place in Del Mar. If the hospital had it their way, I would be in a hotel from today until the 13th, but that to me was ridiculous so we made the call just to head back to pop’s pad. It’s about a 50 minute drive so I’m still close enough to get here quickly in case something goes wrong.
Thank you to everyone who lent a helping hand in trying to find a place for us. The place we are going with was one of the first ones we really liked, but someone entered the scene and swooped it from us by writing them a check for 6 months of rent. We were bummed but figured there would be more out there, but the more we looked, the more we realized that that place was a gem. Well, as luck would have it, that fat check bounced and now the place is ours. Unfortunately as I said above, it won’t be ready until the 13th but it will be well worth the wait. It’s a stone’s throw from the beach and perfect for what we need until the April/May timeframe.
As far as my health goes, all is good. My counts are looking good and aside from being tired during random parts of the day, I feel great. My doctors continue to use the word amazing when describing my post transplant recovery so I can hang my hat on that for now. My counts for those of you keeping track are: White Blood Cells – 2,000, Hematocrit – 27.8, Hemoglobin – 9.7 and Platelets continue to climb to 149,000. All are exactly where they should be and the goal of my 3 visits per week to the Cancer Center here will be to make sure they remain in line.
That’s it for today everyone. Thanks for reading and we’ll catch up soon.
P.S. Sorry this is so long Kate...
Friday, November 7, 2008
Monday, November 3, 2008
Day + 12
Happy Monday everyone. I hope that by now you are all coming out of your weekend fog and ready to be productive, where ever you are. Better late then never right?
So in the world of Leukemia, the only four words better than “Congratulations, you’re in remission”, are “Congratulations, you are engrafting”. Engrafting is a word used in the world of the stem cell transplantation. It means the stem cells that were introduced to the host body via transplant have embedded into the bone marrow and started producing new cells. This usually takes 15 days or so from the time the host body cell counts go to 0. In my situation, day + 3 was when my counts hit 0.
Well, the night before last at 3am Sunday morning, my nurse walked in and told me those 4 magical words, “Congratulations, you are engrafting”. That’s right, I started engrafting on Sunday, day + 11. But in reality it is actually Day + 8 due to the fact it took my counts 3 days to hit 0 after the chemo/radiation treatments. I seriously can’t put into words what it means and feels like to hear those words. At that point, my nurse could have been wearing white wings and a golden halo. That is how much it means to hear those words. All the pain I went through over the past 4 months. All of the anger and resentment. All of that time being curled up in a ball waiting for the misery to pass. All of that goes away when you hear those words.
Now there is still a long way to go, but my doctors have all told me that it is pretty amazing to see so much happen in such a sort period of time. They all feel the prognosis is extremely positive based on what they are seeing now. As of today my white cells are at 4,500, hemoglobin is at 10, hematocrit is at 28.9 and platelets are at 37. Those are all up from the day before and are misleadingly looking like healthy counts. Misleadingly because the cells being produced are very immature. It could take up to 3 months for those cells to mature into the cells of a normal, healthy person. During those 2-3 months is when it is most critical, which is why it is so important for Evey and I to find a place down here. It is just too risky to be longer than 15 minutes away from the hospital in case I come down with a fever or any other sign of rejection. We are still looking for a place but getting closer.
The bummer about all of this is that if we had a place down here, I could get released from the hospital on Wednesday of this week. But because we don’t have a place for me to go to, and Orange County is absolutely out of the question, I have to stay in the hospital until we have a place. That is how serious the next 3 months are going to be. I’ll tell you what though, if that is my biggest problem at this point…I’m stoked.
That’s it for now guys but as you can see much more to come. Feel free to lob any questions my way. Until then, take good care of yourselves and we’ll catch up soon.
-Kurt
So in the world of Leukemia, the only four words better than “Congratulations, you’re in remission”, are “Congratulations, you are engrafting”. Engrafting is a word used in the world of the stem cell transplantation. It means the stem cells that were introduced to the host body via transplant have embedded into the bone marrow and started producing new cells. This usually takes 15 days or so from the time the host body cell counts go to 0. In my situation, day + 3 was when my counts hit 0.
Well, the night before last at 3am Sunday morning, my nurse walked in and told me those 4 magical words, “Congratulations, you are engrafting”. That’s right, I started engrafting on Sunday, day + 11. But in reality it is actually Day + 8 due to the fact it took my counts 3 days to hit 0 after the chemo/radiation treatments. I seriously can’t put into words what it means and feels like to hear those words. At that point, my nurse could have been wearing white wings and a golden halo. That is how much it means to hear those words. All the pain I went through over the past 4 months. All of the anger and resentment. All of that time being curled up in a ball waiting for the misery to pass. All of that goes away when you hear those words.
Now there is still a long way to go, but my doctors have all told me that it is pretty amazing to see so much happen in such a sort period of time. They all feel the prognosis is extremely positive based on what they are seeing now. As of today my white cells are at 4,500, hemoglobin is at 10, hematocrit is at 28.9 and platelets are at 37. Those are all up from the day before and are misleadingly looking like healthy counts. Misleadingly because the cells being produced are very immature. It could take up to 3 months for those cells to mature into the cells of a normal, healthy person. During those 2-3 months is when it is most critical, which is why it is so important for Evey and I to find a place down here. It is just too risky to be longer than 15 minutes away from the hospital in case I come down with a fever or any other sign of rejection. We are still looking for a place but getting closer.
The bummer about all of this is that if we had a place down here, I could get released from the hospital on Wednesday of this week. But because we don’t have a place for me to go to, and Orange County is absolutely out of the question, I have to stay in the hospital until we have a place. That is how serious the next 3 months are going to be. I’ll tell you what though, if that is my biggest problem at this point…I’m stoked.
That’s it for now guys but as you can see much more to come. Feel free to lob any questions my way. Until then, take good care of yourselves and we’ll catch up soon.
-Kurt
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