I GAINED TWO POUNDS! Sorry for yelling but in my current condition, 2 pounds is huge and I'll take it. Greetings from the new beach pad, and a great new pad it is. On one side we have the bay with a bunch of boat docked on moorings right off the shore. Right across the bay there is a big hotel which you can hear music from on weekend nights, or at least that's where we think it's coming from. About 4 blocks directly behind us is the ocean. Our place is positioned right on the end of the Mission bay peninsula so we’re perfectly placed for both bay and ocean. It really is a perfect spot to get well and I am loving it more and more every day. Evey and I go on walks just about every day ranging from 1-3 miles so we have done a good amount of exploring so far. Just the other morning we were walking along the ocean side and saw a bunch of dolphins sharing waves with the surfers. I had to sit down on the bench for 5 minutes just to soak it in. It was an unreal feeling just knowing that this is where I’ll be living for the next 6 months. The only thing missing is Floyd, but he has visitation rights so we’ll be seeing him occasionally.
So again, I gained 2 pounds which is huge considering I am right now about 30 pounds underweight. My last hospital visit really took it out of me for some reason. I guess it could have something to do with the chemo/radiation combo combined with the fact that I had a new immune system introduced to my body. I need to keep reminding myself of that. Anyway, I am way underweight right now and my goal now is to put it back on as quickly as possible. My clothes don’t fit anymore and I feel like I look someone out of a prison camp. I feel like one of those skinny African kids on a charity infomercial, asking for someone to “adopt” me for the cost of a cup of coffee a day. You get the picture. I’m pretty optimistic I’ll put it back in pretty quickly, but I have a couple issues I need to battle through. The first is the bad nausea that hit me when I got discharged. I had it really bad for the first 10 days or so and it has seemed to pull back a bit this week, but it still comes and goes. Nausea just makes everything look and taste horrible, no matter how hungry you are. The other issue is my taste buds, or lack there of. The last round of chemo and radiation completely fried my taste buds so foods not only taste different, but they taste bad. Everything has a weird tinge that makes all food, no matter how much you love it, taste off. And after a couple of days of that, you just don’t want to eat at all. Luckily my taste buds have finally started to come back around this week. The doctor said it could take as long as 6 weeks so I am hoping they are here to stay and not just flashing in and out. We’ll see. So once I get past these two issues, which I already kind of am, I should be back on track to put this weight back on.
As far as the rest of my health goes, all is good. I feel much better than last week and my blood counts are still very good. White blood cells are at 3,600, Hemoglobin is at 10.6, Hematocrit is at 31.9 and platelets at 119,000. All are doing great but my platelet count seems to be dropping a bit. They are still in great shape but slowly going down…no problem at all. My walks are getting better and better and I feel like I’m getting more energy with every day that passes. It will be a while before I can back into a good exercise program, but walking for now is doing wonders.
That’s it for now everyone. All is well and will keep getting better as the days go on. Take care, be well and thanks for reading.
Thursday, November 20, 2008
Monday, November 10, 2008
Day + 19
Greetings from the couch, and a very comfortable couch at that. Not a bad night at all. I’m sitting here with Floyd on my right, a nice fire going in the fire place and a good football game which I didn't expect. A hell of a lot better than hospital life, that I can promise you.
So I spoke a bit too soon on our living arrangement, but don’t worry, things changed for the better. We had the Del Mar place locked and loaded at the time of my last message and had every intension of taking that place, but had one more place to check out. Well, Evey went to look at it on Friday and really liked it. She called me and we put the Del Mar place on hold until I had a chance to look at it. We went on Friday after I was released and the rest is history. This place is in Mission Beach, right on the water on the bay side. It’s a summer rental that doesn’t go advertised in the winter time. The only reason we got a shot at it is because Evey put an ad on Craig’s list outlining what we needed. Our new landlord saw Evey’s ad and luckily gave us a call. After two visits and a few phone calls, we move in on Friday. It’s a three bedroom, two bath place right on the boardwalk. You could literally throw a rock to the water and spit on the sand. I couldn’t think of a better place to get well.
So I’d like to say the weekend was good and all has gone well since my release from the hospital, but it hasn’t. For some reason, from the minute I walked out of the hospital to the present, I have felt like crap. Crap would be putting it nicely. There is no reason as to why and the doctors today say it’s a part of recovery. It feels like the last 5 months have just come crashing down on me, all at once and all together. All I can say is that for some reason I only see this lasting for the next day or so then things will be back to normal. I guess you’ll have to wait until my next message to see if my optimistic outlook held true. Either way, the last four days have sucked and I can’t wait until this has passed, whatever it is.
Today was testing day at the hospital so Evey and I spent the day down there. Aside from me just generally feeling crappy, my counts look really good and things are progressing well. For those of you keeping track, my WBC is at 3,000, Hemoglobin is at 10.2, Hematocrit is at 30.3 and platelets at 158,000. All have climbed since my last reading so things continue to get better. I have had minimal signs of rejection and can only hope it stays that way.
That’s it for now. Take care and thanks for reading.
So I spoke a bit too soon on our living arrangement, but don’t worry, things changed for the better. We had the Del Mar place locked and loaded at the time of my last message and had every intension of taking that place, but had one more place to check out. Well, Evey went to look at it on Friday and really liked it. She called me and we put the Del Mar place on hold until I had a chance to look at it. We went on Friday after I was released and the rest is history. This place is in Mission Beach, right on the water on the bay side. It’s a summer rental that doesn’t go advertised in the winter time. The only reason we got a shot at it is because Evey put an ad on Craig’s list outlining what we needed. Our new landlord saw Evey’s ad and luckily gave us a call. After two visits and a few phone calls, we move in on Friday. It’s a three bedroom, two bath place right on the boardwalk. You could literally throw a rock to the water and spit on the sand. I couldn’t think of a better place to get well.
So I’d like to say the weekend was good and all has gone well since my release from the hospital, but it hasn’t. For some reason, from the minute I walked out of the hospital to the present, I have felt like crap. Crap would be putting it nicely. There is no reason as to why and the doctors today say it’s a part of recovery. It feels like the last 5 months have just come crashing down on me, all at once and all together. All I can say is that for some reason I only see this lasting for the next day or so then things will be back to normal. I guess you’ll have to wait until my next message to see if my optimistic outlook held true. Either way, the last four days have sucked and I can’t wait until this has passed, whatever it is.
Today was testing day at the hospital so Evey and I spent the day down there. Aside from me just generally feeling crappy, my counts look really good and things are progressing well. For those of you keeping track, my WBC is at 3,000, Hemoglobin is at 10.2, Hematocrit is at 30.3 and platelets at 158,000. All have climbed since my last reading so things continue to get better. I have had minimal signs of rejection and can only hope it stays that way.
That’s it for now. Take care and thanks for reading.
Friday, November 7, 2008
Day + 16
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...
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...
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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