Posted on Friday, 8/13/04
Thursday, 8/12/04
(Day 55)
Red=7.9
White=21900
Platelets=6
Blasts=20500
Neutrophils=200
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Well, for those of you who don't know, today is the one-year anniversary of my father's death due to lung cancer. So far we are taking it very well, but I think that today we are going to be just a little more saddened because of this. We are planning to go out to eat with my Aunt Brenda and my Cousin Sarah (from my mom's side of the family) tonight for dinner, and we might go to lunch with another aunt, Kathy (from my dad's side of the family).
I'm still feeling about the same. The other day my throat started hurting when I would swallow, so yesterday the Dr. gave me some liquid to numb my throat and an antibiotic pill to clear it up. Also, as you can see, the level of the Blasts (the Leukemic Cells) is going up rather quickly, so I'm not too sure what's going to happen in the next few weeks. I've been home for 5 weeks now, and I'm still hanging in there rather well. I figured that I would have been doing worse by now, but I'm still doing well.
I've been getting out a lot during the last week. Last Thursday my mom and I went to the casino in Windsor and we stayed two nights in the hotel. On Friday I went to a spa inside of the hotel and got a massage. Of course we did lots of gambling at the casino, and we also went to one of the bingos while we were in Windsor. (My mom loves going to bingo over there.) Then, on Tuesday we went to my Aunt Carol's cottage on the lake in Hillsdale and stayed the night there. We had a bomb fire and drove around the lake on her pontoon boat.
Well, I think that's about all that has happened this week, so I think I'm going to wrap it up for today. Stay tuned for more updates. Chris.
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Posted on Monday, 8/02/04
Friday, 7/30/04
(Day 42)
Red=7.4
White=13100
Platelets=5
Blasts=9563
Neutrophils=131
Monday, 7/26/04
(Day 41)
Red:9.9
White:17200
Platelets:12
Blasts=?
Neutrophils=860
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Well, it's been over a week since my last update, so I figured it was time to let you guys know how I'm doing. We finally got a home nurse to come out to the house to draw my blood work so that I don't have to wait for 2 hours at Karmanos for the same blood work. The nurse comes out to my house on Monday and Thursday, and if I need any blood or platelets, I go to Karmanos the next day. Of course, on last Thursday, the nurse messed up and didn't put my name on the tube that the blood work was in, so the lab would not process the blood. Because of this, she had to come out on Friday and redraw the blood. This blood count shown that my platelet count was only 5, so I needed to get a platelet transfusion, but it was too late in the day when we got the results, so I had to go in on Saturday for the platelets.
Other than that, I have been running a low grade fever for the last 4 days or so, and today the fever was at 100.4. Also, Friday and Sunday I had some bad joint pain in my knees and in my left elbow. I think that this is from the leukemia cells bunching up in the joints and causing the pain. It also may be from a collection of water in the joints, because I think that I am retaining water again, so I need to take some lasix.
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Posted on Sunday, 7/25/04
Friday, 7/23/04
(Day 35)
Red=8.7
White=1570
Platelets=13
Blasts=1420
Neutrophils=60
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Sorry it took me so long to update, we have been doing a lot of running around the last week getting things in order. The first thing that you will notice that is different on the site is that in the left hand column, I added a blood count called “Blasts”, and a blood count called Neutrophils. So, I should explain what these are. The Blasts are the number of leukemia cells that make up my white blood count, so we want this number to be as low as possible. The Neutrophils are the number of infection fighting cells that make up my white blood count, so naturally, we want this number to be as high as possible. There are a few different cells that make up the white blood count, but none of them seem to matter for me except the Blasts and Neutrophils. Eventually the blasts will take over all of the good neutrophils and that is when I am going to run into trouble, but the Dr. does have me on a medication to try to keep the blasts down for as long as we can.
This next paragraph is going to list some of the ways that leukemia ends up killing people. I am putting it here so that anyone who wishes to know can find out, and because most people don't feel comfortable asking me outright, but may wish to know. If you don't want to know, just skip down to the next paragraph where it gets a little less gory. The most common way people with leukemia die is by getting an infection. This infection can be as little as a cold, or something bigger, say a repertory infection, or even a cut on your finger that gets infected. A second way is if the person were to cut himself, and because his platelet level is so low, he could bleed to death. A third way is when the leukemia cells take up all of the room in the bone marrow that one's body cannot produce any more blood or platelets, so they can't get enough blood the brain and other organs. A fourth way would be one's body not accepting blood or platelet transfusions and thus the red blood count lowers until there is not enough blood to support the organs. A fifth way is from a blood aneurysm in the brain due to higher blood pressure from all of the leukemia cells. And finally, the last way that the Dr. told me is that any of the major organs might just give out, because of the extra work they have to do. For instance, the heart can give out because the red blood cells are low, so it has to pump harder to supply everything with blood.
Well, now that we have all of the bad news over with, I want to let everyone know that I am still feeling okay. I'm starting to sleep a little more than usual, and it is getting harder to do things, but I'm still hanging in there. I only have a little bit of pain, mostly in my back and stomach, but I have pills to take care of that. They took me off of a lot of the pills that I was on down in Cleveland, so that makes it a lot easier on me. Also, starting Monday, I am having a home nurse come out to take my blood work. She will come out to the house on Mondays and Thursdays, and this will make it so that I don't have to go back to Karmanos unless I need a transfusion, or if I need to see the Dr. for anything. This should turn a 3 hour Dr. visit into a 30 minute nurse visit and I won't even have to leave the house.
Well, that's about it for tonight. I'd like to thank everyone for their continued support and prayers and I hope to see you on the other side.
Chris Fling
P.S. For anyone who enjoyed the nature pictures that I have on the site, I finally found somewhere that I can post all of my pictures for free. If you wish to view them, download some of them, or you can buy printouts, just go to http://photos.yahoo.com/chrisfling. Note that anything you purchase on the site goes through Yahoo, NOT ME, but supposedly you get your first 10 4x6 prints free.
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Thursday, 7/15/04
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Well here is the update that I have been dreading and putting off since Friday. I have some bad news for all of those people out there that don't know already:
THE LEUKEMIA IS BACK.
Also, I'm not showing any evidence of the third transplant working. There is still a slight chance that it will still catch, but that is highly unlikely. Because of the leukemia coming back and the fact that the transplant didn't work, the Dr. in Cleveland has sent me home, and I've been home in Michigan since Saturday. Right now I'm feeling rather well physically. I've just been having the aces and pains that I have been having for the last couple of months. I've been getting out a lot around here, and doing rather well, except for being a little fatigued. The Dr. said that I've probably only got a couple of months, and any other treatment would maybe add a week or two, but I wouldn't be feeling as well as I do now if I start any more treatment.
For anyone who knows me personally, if you wish to get together with me, feel free to contact me, I am up for visitors, just let me know so we can work out a good time. I know that in this type of situation, many people are afraid that if they come and visit or talk to me on the phone they are disturbing me, so I wanted to point it out that it won't bother me at all, and I would let you know if I needed to be left alone.
Well it's getting late, so I'm going to go now. I'm not sure how long it will be until the next update, but I'll keep them coming as long as I can.
Chris.
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Wednesday, 6/30/04
(Day 12)
Red=9.5
White=2390
Platelets=8
Tuesday, 6/29/04
(Day 11)
Red:8.9
White:710
Platelets:6
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Tuesday was a late day in the clinic. My appointment wasn't until 10:45 when usually it's at 9:45. I needed some blood, but by the time figured this out, it was 3:30. When they give you a blood transfusion, they always give two units of blood, but I didn't have time to get them both, because it takes an hour and a half to give one unit, plus at least an hour for the blood bank to send the blood over. Because of this, they gave me one unit of blood on Tuesday, and one on Wednesday. Anyway, I was at the clinic until 6:30 on Tuesday.
Wednesday was much better. As soon as I got to the clinic, they started the unit of blood that was ordered on Tuesday, and we were out of the clinic by 2:00. After we left the clinic, we went to eat at Applebee's. We split an order of nachos and an order of cheese sticks. This was a mistake and both my mother and I regretted it. After we ate, we went to the store to look for me a new belt (Because my stomach has grown from my spleen being enlarged, which has been going on for a few months now), but I couldn't find one that I liked that was in my size. After that, I was wore out, so we came home and I took a nap. Once I woke up, we went down to Little Italy again for dinner.
I have been feeling well most of the time, so we have been doing a lot more lately. This weekend we get to come home to Michigan again. We get to leave after my appointment on Friday and don't have to be back until Tuesday. Saturday and Sunday we are planning to go to my cousin's place and they are going to shoot off some fireworks. Than we are coming home Sunday night and staying until Tuesday morning.
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Monday, 6/28/04
(Day 10)
Red=9.6
White=1120
Platelets=6
Saturday, 6/26/04
(Day 8)
Red:9.5
White:2830
Platelets:5
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We had a pretty standard weekend, two of my aunts came down on Sunday and we went out to eat. This time we traveled to the west of the hospital when usually we go to the east, so there was different scenery. We found a few new restaurants and ended up eating at a Bob Evans. On Saturday, I needed platelets, so I spent most of the day in the clinic. As you see to the left my white count is still dropping. This is just because they stopped the Neupogin shots and it is a normal reaction.
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Friday, 6/25/04
(Day 7)
Red=10.0
White=3020
Platelets=7
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Not much happening today. You can see that my white count jumped up to over 3000 today, but that is just because they gave me a Neupogin shot yesterday, and that makes the white count go up. So this jump in the white count isn't from the new bone marrow. It will still take about 3 more weeks before the new bone marrow catches and starts to work.
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Tuesday, 6/22/04
(Day 4)
Red=10.0
White=1600
Platelets=7
Monday, 6/21/04
(Day 3)
Red:10.8
White:1710
Platelets:7
Saturday, 6/19/04:
(Day 1)
Red:10.2
White:600
Platelets:6
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Monday's appointments were all screwy, so we ended up at the clinic from 9:30 till 6:00, and most of that time was spent in the waiting room, so I didn't have time to update the site then. Today's appointment went much better though. My appointment was at 11:15, they called me back for treatment around 12:00 and took my blood work. After waiting the standard hour and a half for the blood work to come back, it ended up that all of my blood counts were good enough that I didn't need any transfusions or medications, so I was able to leave just before 2:00. This was one of the shorter appointments.
After today's appointment I was feeling very well, with just my usual aches and pains, so we decided to go out and watch a movie at the theater. We ended up watching The Terminal and we went out to eat at Ruby Tuesday's afterwards. The movie started out pretty good and funny, but then it turned into a chick-flick.
One comment about my blood counts listed to the left, you will notice a large jump in my white counts from Saturday to Monday. This is because they gave me a shot of Neupogin, which makes my body produce more white cells. These cells are still mine and not the donors. They give me this shot so that I can stay out of the hospital, because usually when my white count goes below 1000 they would like for me to be in the hospital so that I don't get an infection. When the donor's cells start to catch, my counts are supposed to shoot up rather fast. This is going to happen to all of my counts, white, red, and platelets, but possibly at different times. First the white, then the red and finally, but maybe not right away, my platelets will shoot up once the donor cells "graft".
Lastly tonight,
When we seen the Dr. yesterday, he started to hint that maby once this transplant does graft, he will work on some way to get us back home to Michigan, even before the standard 100 day waiting period that we are supposed to stay down here in Cleveland. So maybe, just maybe, we will get to come home sooner that thought. We just need to hope the transplant catches quickly and I continue to do well with few side effects.
Till next time,
Chris
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Friday, 6/18/04
(Day 0)
Red=10.6
White=840
Platelets=6
Wednesday, 6/16/04
(Day -2)
Red:10.5
White:1550
Platelets:7
Tuesday, 6/15/04:
(Day -3)
Red:11.5
White:2350
Platelets:9
Monday, 6/14/04:
(Day -4)
Red:10.8
White:2650
Platelets:8
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Transplant Day!!
Today's transplant went well, like the others. I didn't have any complications as they were giving me the donor's marrow. Just a quick update for anyone who still thinks that the transplant involves some sort of a surgery on my part, it doesn't. The donor gets the cells removed from his body through an IV that acts like a kidney dialyses machine. It takes the donor's blood, filters out the cells that he is donating and returns the normal blood to his body. On my end, when the cells get to me, they hook it up like I was getting a blood transfusion. The cells look just like a blood transfusion, except they are a little pinker in color. It's going to take at least a month before we find out if the transplant has worked this time, and it could take up to 3 or 4 months.
I am feeling well, and I have been walking a lot better. I can get to many places with just a cane instead of the walker that I used to have to use, and for short distances, I don't need any help, I just need to balance myself. For the next couple of weeks I need to go to the outpatient clinic for blood work every day but Sunday, so I'm going to be somewhat busy. Mondays are going to be my long days in the clinic because I also have to see the Dr., so I'm going to try to bring my laptop with me and update the site on Mondays for sure. I'll also try to post updates on Thursdays and if anything exciting happens, I'll post that when it happens.
I'm hoping to be feeling well for the next month or so while the new cells merge into my cells and take over, but I still have the threat of Graft Vs. Host Disease. This Graft Vs. Host Disease is when the donor's bone marrow sees my organs: (Skin, GI Track, Liver, Kidneys, etc.), as foreign and attacks them like they were a virus. Almost everyone gets this after a transplant, and it's actually good to get it, because it will also kill any remaining Leukemia cells that may be lurking around. The Dr.s say that everyone gets it at different times and in different severities, but I will probably get some skin rashes and have some troubles with my GI Track.
Well, that's it for now, just waiting for my counts to jump up. I'm still not out of the woods yet, but the good news is that I get to start my 100 day count again, so I'll get to come home in 100 more days!
P.S. I found out that my donor is a male from the US, and his blood type is AB-. My blood type is A+, but that does not matter, my body just converts over to his blood type. Also, as I mentioned before on the criteria that they have to match for donors, this donor matched 6 out of 6 tags. For my first two transplants, the donor only matched 5 out of 6, so this third transplant has a better chance to work than the first two did.
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Sunday, 6/13/04
(Day -5)
Red=9.4
White=3260
Platelets=7
Saturday, 6/12/04:
(Day -6)
Red:8.0
White:2330
Platelets:13
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Well, I started my chemo yesterday. It was an eight-hour IV drip, but it was only a small bag of chemo, so it dripped quite slowly. Everything started off well, and then with about 45 minutes left in the drip, I started to get the chills and shivers, followed by a fever. This was at about 8:00 pm. To treat these symptoms, the nurse started out giving me some Demurral, which is supposed to help stop the shivers. Well it did, but only for about 15 minutes. So after that, she gave me some Benadryl. That only worked for about 15 minutes too. Finally, she gave me some Hydrocortisone and that finally knocked out the shivers and chills. I ended up feeling pretty miserable for about two hours before it was all done. Then, because of the fever and because of everything that was going on, I couldn't get to sleep until about 3:00 am. I just kept tossing and turning in the bed.
Today's dose of chemo went much better. Instead of waiting until I got the shivers, they gave me the Benadryl and Hydrocortisone about half way through the 8 hour drip, and I ended up not getting any chills or shivers. So, now I'm just hanging around waiting until Friday for the transplant. I'm hoping that I handle the next three doses of chemo well, and don't get too sick from it. I should do well though, being that the first two doses didn't make me sick, but just gave me the chills.
Finally, the Dr. that is working in-house this month thought that I was going to stay in the hospital "for the duration" of the transplant (meaning for about a month, until the transplant catches), but my main Dr. had implied that I should be able to get out of the hospital right after the transplant, like on Friday or Saturday. So there is still some confusion on when I'm getting back out. It looks like it's all going to depend on how my white count is looking after the transplant. I think that if the white count is above 1000 they will probably let me out, and if it's any lower that 1000, they will keep me in until it goes back up.
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Wednesday, 6/09/04
Red=9.0
White=2670
Platelets=7
Monday, 6/07/04:
Red:8.8
White:1870
Platelets:7
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I haven't been updating the website lately because I have had some troubles with my laptop. I had to spend two days reformatting it and reinstalling all of my programs. (I'm still not done reinstalling, but I installed the programs I need to update the website.)
There is going to be another slight change in my schedule for the transplant. Instead of starting chemo tomorrow, I'm going to go into the hospital on Friday and start the chemo on Saturday. It's going to be inpatient instead of outpatient. I will still get five days of chemo, then one day of rest, instead of two, and finally, the transplant, is still on Friday, the 18th. I should still be able to get out of the hospital after the transplant, as long as my counts are okay.
The reason they are doing it this way now is because at first they thought it was going to take five hours for the chemo, but the Dr. decided that he wanted to give it to me over eight hours instead, and the outpatient clinic is only open 1/2 a day on Saturday. Because of this, there would not be enough time to give me my chemo on Saturday, and also, if I needed blood or platelets any day, there would not be enough time to give them to me because the clinic closes at 5:00 and I cannot get blood or platelets while I am getting chemo.
I have been feeling very well, and my blood counts have been holding their own. I have even been making my own red blood cells for the last week or so. Of course now they are going to knock that all back down, but it is something good to report for now. On my few days off, I have been able to get out a little bit, going to the store and out to eat mostly. I have also been able to walk better. I am able to walk down the hall without any assistance, but if I go any ware far, I still need the walker for stability.
I'm starting to get a little scared again, I really don't want to have to go through the transplant again now that I am feeling so much better. I've been thinking about my dad and what he had to go through and it's making me a little sad and nervous. I know that this transplant is supposed to be easier on me, but I fear that I'm might get sick again, and I've gotten pretty bad in the first two transplants. Also, I'm afraid that the transplant might not work, especially because they are only suppressing my immune-system this time instead of killing it off to practically nothing like they did for the first two. But as I've said in the past, this one has to work, so I'm going to go through this transplant with the same positive attitude that I did with the first two. I've got another quote from a song that I happened to be playing while I was typing this up. It's from the Live CD The Distance To Here, and the song title is Face And Ghost (The Children's Song)...
in spite of my confusion
up above all my pain
I gotta death-grip on this vision
here we go again
So, as the song says, HERE WE GO AGAIN.
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Thursday, 6/03/04
Red=9.7
White=1350
Platelets=7
Tuesday, 6/01/04:
Red:9.3
White:1500
Platelets:6
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My weekend went well. We left to come home on Friday about 3:00. We ended getting home around 6:00, so we unpacked and just laid around the house for the rest of the day. Saturday we had another lazy day and just stayed home. Sunday my aunt had a barbeque, so we went over there and had a great dinner. Monday my mom went to Canada to play Bingo. At the same time, I went to my friend Matt's church picnic for a couple of hours, and then I went out to eat with my friend Julie around 2:00. We ended up coming back to Cleveland early on Tuesday morning so that I could still make my 12:15 appointment.
Today is another long day in the clinic. I need to get a medication they call IVIG, which takes 4 hours to administer. Also, I need some platelets, which will add an hour or two, depending how fast the nurse is.
The nurse has been slow today. I could have been out of here two hours earlier if the nurse would have listened to me when I first got here. When I first sat down, I asked her "Am I going to need IVIG today? Because I usually get it on Fridays, but I don't have an appointment for this Friday." After I asked this, the nurse looked at my chart and said, "No, you don't need IVIG today. It's not on my order." Well, needless to say, when the nurse, Kelly (who's job is to follow me around whenever I'm In clinic to make sure everything is going okay, and to answer any questions I may have) came in, I asked her if I needed the IVIG today or if I was getting it on Saturday, she found out that my nurse in the clinic was looking at the orders for Saturday and thinking that they were for today, so in-fact I did need the IVIG. It took two hours to figure that out before I could start the IVIG, so I was just sitting here when I could have been getting my medicine so that I can get out of the clinic.
Lastly, they found out that I'm not producing enough cortisol, so that may be why I have been light headed and my equilibrium is messed up. The Dr. is upping my prednisone perscription to try to fix this.
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Friday, 5/28/04
Red=9.6
White=2960
Platelets=6
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Today was another day spent in the clinic. This time was much better than last time, but I was still there for 6 hours. I needed a medication that takes 4 hours to drip, magnesium, and platelets. I get to come home this weekend again!! Most likely we are going to leave tonight and stay through Monday. I'm feeling very well today, my vision is a little better and I'm walking much better. I'm getting some muscle back in my legs, and it's making me feel much stronger.
There is a change in the transplant date again, this time for the better. I'm going to start chemo on the 10th of June. I will have chemo on the 10th, 11th, 12th, 14th, and 15th. The transplant will be on the 18th of June.
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Wednesday, 5/26/04
Red=8.6
White=2440
Platelets=8
Monday, 5/24/04:
Red:7.8
White:1910
Platelets:4
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Today we spent another exciting day in the clinic. My appointment was at 9:15, so we got there around 9:00. We sat there for 45 minutes and started to get mad, so I went up to the desk and made sure that I was still on their list and the lady said "Yes, you are right here on the list of arrived patients, the nurses had a meeting that went over, so they are running a little late today." So we waited about 30 more minutes and I overheard a nurse ask the same person, "Has the patient Christopher Fling shown up yet?." Come to find out somebody told my nurse that I did not show up for the appointment, although I had been there since before they were even bringing patients back into the rooms. Once we finally got back into the room, my nurse told me all of this and she said that I was supposed to be the first patient of the day, so I should of been getting treatment for the last hour and a half. Luckily, once we got to the treatment room, the nurse was quick at setting me up for the blood transfusion that I needed, and I ended up not needing platelets or electrolytes (which I had been needing the past few visits and take 2 to 3 hours to administer.) Because of this, we ended up getting out of the clinic around 1:00, which is early for us.
At 4:00 we had a Dr. appointment and the same basic thing happened. We arrived at 4:00 and the Dr. was running late. We ended up having to sit for just over an hour before he could see us.
At the Dr. appointment we found out that the new donor that we have lined up cannot donate until June 28th and 29th. This setback will make my transplant date June 30th, with my chemo starting on the 21st or 22nd of June.
Lastly, today, the Dr. has officially told us that I can go home for the weekend, so as long as I'm feeling okay, I can legally come home for the Memorial Day weekend.
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Wednesday, 5/19/04
Red=10.0
White=2860
Platelets=12
Tuesday, 5/18/04:
Red:10.3
White:3260
Platelets:10
Monday, 5/17/04:
Red:10.6
White:2200
Platelets:10
Sunday 5/16/04:
Red:9.1
White:930
Platlets:3
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I'm in the hospital again. Just a little setback, I've been in since Sunday and they tell me that I should be able to get out Friday. I had a fever of 100.3 on Sunday, and that's all that it takes to put me in the hospital for 5 to 10 days. Today, I'm feeling fine, and I'm ready to get out again. Things are going to be like this for a while I think, in the hospital for a week, out for a week. That's about it for now. I'll let you know if I learn anything more about the mini transplant, but for now it looks like that is scheduled for the 3rd of June.
NOTE: The huge jump in my white count is due to the medicine that they give me, Neupogen, that helps the body produce the white cells. The count will go down slightly when they stop the Neupogen and that is all normal.
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Friday, 5/14/04
Red=10.4
White=1370
Platelets=5
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Well, today is day 100 from the first transplant. We should be packing up and coming home, but we're going to be stuck down here for the third transplant. (For those of you who don't know, because my old bone marrow cells came back instead of the donor's cells catching on, I have to do a third, "mini" transplant with a different donor.)
This "mini" transplant is done on an outpatient basis, so as long as I stay free of infection, I won't need to be in the hospital. This will make things easier on us. The donor has agreed to collect his cells on June 1st and 2nd, so it's looking like my third transplant will be on June 3rd.
With the "mini" transplant, they give me three or four days of a different chemo to knock down my bone marrow again, and then they give me the stem cells that they collected from the donor. Stem cells are a more mature bone marrow cell, so it is 'supposed' to work better and quicker. (For those of you who missed it, my first transplant was with regular bone marrow cells and the second transplant was with stem cells.)
P.S. I'm going to stop counting the day numbers in the left column until we start the countdown for this third transplant to help save some confusion. Then I'll start the countdown for this 100 days once we start the third transplant.
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Monday, 5/10/04
(Day 46)
Red=9.5
White=1570
Platelets=10
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FINALLY, AN UPDATE!
I'm back in the hospital for a short stay because I had a slight fever along with water on my heart and in my abdomen. They still haven't found out what the fever is from, it could be from the water on my heart, or some other virus they didn't check for, so they did some more blood tests late today. Also, first thing in the morning yesterday, I popped something in my lower back, so now my back is soar all the time. I'm sure that I'm missing something, but that's about all I can think of for today.
P.S. I'm sorry it's been taking so nong to post updates, but for some reason it has been taking at the minimum, 1 hour for me to update the site. For instance, I started today's update at 3:30 and am yust now finishing at 5:40 because of all of the distractions.
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Saturday, 5/01/04
(Day 37)
Red=9.2
White=1130
Platelets=8
Thursday, 4/29/04:
(Day 35)
Red:10.0
White:2240
Platelets:5
Wednesday 4/28/04:
(Day 34)
Red:10.0
White:2180
Platlets:6
Tuesday, 4/27/04:
(Day 33)
Red:7.8
White:1750
Platelets:6
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(posted on 5/8/04) -- Sorry that I haven't been updating the site in awhile, but
the Dr. appointments have been taking all day. Here is a list of my blood counts for those of you who are keeping track.
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Monday, 4/26/04
(Day 32)
Red=9.0
White=2550
Platelets=5
Saturday, 4/24/04:
(Day 30)
Red: 9.9
White: 1500
Platelets: 9
Friday 4/23/04:
(Day 29)
Red: 9.6
White: 1910
Platlets: 8
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They let me out of the hospital on Friday!! It was around 2pm when they let me go, but then I had to go back at 3pm to talk with the outpatient nurse to make sure that I had all of my prescriptions and appointments for the coming week. After that, we just came back to our room and laid around for the rest of the night.
On Saturday I had to go to the outpatient building for two units of platelets. That took up most of the day.
Sunday my two aunts came down to visit. We went out to eat at Applebee's, and went shopping. This took us over 5 hours, so that took up most of the day.
Finally, today, Monday, I had another long day at the clinic. We were there from 8:45am till 5pm getting more platelets, a couple of medications through my IV, and seeing the Dr. For now, we are going to wait a couple of weeks to see how I do outside of the hospital, and next week I am going to have a bone marrow biopsy to check out what is going on in my bone marrow, and to make sure that the leukemia is still gone.
P.S. There are not going to be any blood counts for Sundays while I'm out of the hospital, because I don't go to the clinic on Sundays. Also, I'm probably going to keep updating a couple days at a time, like the last two updates. It's easier for me, and there is hopefully not going to be much going on now that I'm out of the hospital. I'll try to work out a schedule for updating and let you know.
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Thursday, 4/22/04
(Day 28)
Red=9.2
White=1030
Platelets=7
Wednesday, 4/21/04:
(Day 27)
Red:
White: 900
Platelets:
Tuesday, 4/20/04:
(Day 26)
Red: 11.5
White: 1100
Platelets: 5
Monday 4/19/04:
(Day 25)
Red: 10.7
White: 760
Platlets: 4
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Once again, sorry for not having any updates the last few days. I've been sleeping a lot. Also, for today and yesterday, they let me off of the floor to go with my mom to the room that she is staying in for a few hours. So I haven't even picked up the laptop these past few days.
Good News: They are going to let me out of the hospital either tomorrow or Saturday so long as I don't get a fever. I am still going to have to come in to the inpatient area to get platelet transfusions every day, but I'll be out of this little room. The Dr. also say that my white count will probably stay around 1000 because they are my cells and they have been through all of the chemo and radiation. (Note: Normal people have a white count of 10 to 14 thousand white blood cells.) Because of this, and because the Leukemia has a higher chance of coming back, I'll need to get another transplant with a different donor in the coming months. So I'm not sure when or if I'll get to come home to Michigan before we start the next transplant. They have already found another match, and I guess this match is a 6 out of 6 match when my previous donor was a 5 out of 6 match, so hopefully this one will work.
Footnote: As I was writing this, I was listening to the radio and the song's lyrics seemed to fit my situation perfectly, so I thought I'd share them with you. The song is Obvious Heart by Finger Eleven, and the lyrics are:
You're still among the lucky ones
And burning longer than the sun
Cause there's a remedy close
In a familiar dose
This bitter pill to swallow
Is last in the bottle tonight
You're empty it's alright
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Sunday, 4/18/04
(Day 24)
Red=9.0
White=700
Platelets=6
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Today I had all kinds of company. Along with my two aunts and their friend that stayed the night, I had my two aunts that usually come down on Sundays come down, and two of their friends came down to see how I was doing. I was pretty much overwhelmed by people in my tiny room. We were planning on going to the lounge were there is more room, but I needed platelets, and the pre-medications that they give me get me drowsy, and I needed Lasics, which make me pee, so I didn't want to go down to the lounge.
Health wise, I feel rather well, feeling better every day. My white count went up again last night. The only bad things that are going on are that my back is still sore from when I pulled the muscle the other day, and my feet are swollen from my diabetes (that I have from all the drugs they are giving me and should go away soon).
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Saturday, 4/17/04
(Day 23)
Red=10.8
White=650
Platelets=9
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Today I started the day off hurting my back. I was sitting on the edge of the bed with my laptop on my lap and a stretched to put it on the table. I over- reached, and pulled a mussel or two in my back. Later on, two of my aunts from my father's side of the family came down along with one of their friends. They are going to stay the night in the Guesthouse Hotel and visit with me more tomorrow. Lastly, my white counts continue to go up. The Dr. says maybe next week to get out of the hospital! About time.
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Friday, 4/16/04
(Day 22)
Red=10.2
White=470
Platelets=8
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(Posted 4/17/04)(Edited 4/18/04) Today we found out the results of the blood test that they did to determine if the bone marrow that is producing all of these white cells were mine or the donors and they ended up being mine. The Dr. then told us that after a few months of being without any bone marrow, your body starts to make it's own again. The GOOD news about this are that once they get to 1000 I should be able to get out of the hospital to start recuperating, and the leukemia is nowhere to be found. The BAD news is that most of the time when your body re-grows its own marrow, the white count usually doesn't go much above 1000 (The normal person's white blood count is 4000-1200) so I'll still be prone to infection. the counts climb slowly, so it may take longer for me to come home from Cleveland. Also, I probably won't produce my own platelets for some time, so I'll need to go to get platelets every other day for an hour or so. And, of course, the leukemia can ALWAYS come back (More so with my marrow than with my donor's marrow.)
We will have the opportunity down the road to do another transplant with the frozen cells that they saved from the second collection, and maybe with another donor, depending on insurance. For now though, we are going to let my cells grow back so that I can get out of here, and hopefully get home pretty soon.
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Thursday , 4/15/04
(Day 21)
Red=8.9
White=350
Platelets=15
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(Posted 4/17/04) Sorry that I haven't updated in a couple of days today I just slept all day. I guess that's part of the transplant process, a few days of being completely wore out. It happened with my first transplant, that's when I was doped up on Morphine also. My white counts did go up again today as you all can see. The Dr. said that we are just going to wait until tomorrow before we finalize any plans. He wants to wait until the blood test that tells him if the marrow is the donor's or mine comes back. (Also the doctors change shifts tomorrow, so I'll have a different Dr. anyways.)
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Wednesday, 4/14/04
(Day 20)
Red=9.2
White=300
Platelets=8
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Today my white count went down to 300 from 370. That is not good. The Dr. wants to wait until tomorrow's blood counts before he makes any decisions on what to do. If they go down again, we are probably going to start chemo and put in the last of my donor cells. If they go up, then we will wait and see if it continues to go up.
Today I also added a bunch of new pictures that I took at the parks, so take a look.
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Tuesday, 4/13/04
(Day 19)
Red=10.9
White=370
Platelets=13
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Well, today my white count went up again. That is probably a good thing, this transplant just might work. Although, the results from the bone marrow biopsy came back that there were no bone marrow cells where they were supposed to be. This is making the Drs. think a little bit. Instead of going ahead with the chemo and third transplant, they are going to send out some blood work tomorrow to see just where the white cells are coming from. It could be that there just weren't any cells where they did the biopsy, or I guess they can come out of your spleen and other organs. So we are hoping that it was just a bad bone marrow biopsy and there is some growth of cells in my marrow. They are also checking if the white cells are my donor's cells, or if somehow my cells caught on again and are growing again. Either way we would be happy, if the cells are mine, they are going to let them grow so that I can get out of here and build up some strength.
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Monday, 4/12/04
(Day 18)
Red=10.8
White=190
Platelets=11
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Well, today started off well, my white count went up to 190 and that was the 4th day in a row that it rose, so we thought that the marrow might be catching. They did a bone marrow biopsy, though, and the preliminary results show that the bone marrow is empty, with no cells in it. So we are going on with the game plan of chemo tomorrow through Thursday, and the extra bag of cells from the donor on Friday. This is my last chance, so the third time better be the charm.(As the saying goes.)
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Sunday, 4/11/04
(Day 17)
Red=8.8
White=120
Platelets=12
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Happy Easter! I know that I'm posting this a day later, so I hope everyone had a happy Easter. Mine was nice, as I mentioned yesterday, family came down and I got to leave my room and go to my mom's room for most of the day. I had a really good time just sitting around talking to my family, laughing at the good times and hearing what they have been up to.
We had our usual, Italian/Polish holiday dinner, consisting of ham, covadoni and meatballs, pierogies, kapoosta, salad and homemade bread. We froze some of the leftovers so that I can eat them later. I think that I can make 5 or 6 meals out of the leftovers, so that will be nice.
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Saturday, 4/10/04
(Day 16)
Red=9.3
White=110
Platelets=8
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Today I've got some family coming down for Easter. The Dr. has allowed me to leave the floor and go to my mom's room today and tomorrow! My Aunt made a rib dinner (my choice) and froze it, so that I can get a descent meal. Tomorrow more family are coming and my Aunt is going to make Easter dinner in her hotel room and bring it to my mom's room (because my mom's room doesn't have a stove, just a microwave and taster-oven) for a homemade Easter Dinner.
On my health, I've been getting the shakes a lot and I'm cold all of the time. Also the blurred vision when I walk is getting worse. I think it might have something to do with the shaking, because it seams that my head is shaking too, and it is hard to hold my head up for long periods of time. Lastly, I'm getting a rash on my face and down my back. The Dr. said that it's a drug rash, from being on a drug for so long, so he is looking into which one it might be so that he can stop it or change it to get rid of the rash. That's it for today.
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Friday, 4/09/04
(Day 15)
Red=10
White=90
Platelets=6
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Ok, here we go the Drs. have a game plan. 1st off, we are going to wait until Monday. Than they are going to do another bone marrow biopsy on me to see if any of the second bone marrow took. If it did, and my counts start going up a bit, then we are good. If not (What the Drs. are thinking) than Tuesday (when they get the test results from the biopsy back) they will start me on a more powerful chemo that they don't normally use on bone marrow transplant patients. This chemo will kill any of the remaining immune system that I have floating around. (Some of your immune system misses the chemo and radiation treatments and can stay in your body for three or four months.) They will give me this chemo for 3 days and than on Friday they are going to give me the extra bone marrow cells that they collected from the donor the second time. Than this one has to work, because after this, there are no more options, they would just send me home. So that's the pickle that I'm in now. Just waiting until Monday to see which way we go.
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Thursday, 4/08/04
(Day 14)
Red=10.6
White=110
Platelets=10
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So far, today hasn't brought us any news. My white count did go up, but only by 10. Normally they would expect it to jump up at least 100. The Dr.s are having their weekly meeting today, and hopefully they will come back and tell me what they decided. We still haven't given up on this graft; we just hope it kicks in soon.
I'm still feeling fairly well, considering all that they put me through. I've been having minor back pain, and I'm having a little trouble keeping my balance because of some of the medications they have given me
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Wednesday, 4/07/04
(Day 13)
Red=9.0
White=100
Platelets=15
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It is a sad day for us today, my white count dropped from 310 to 100, which could mean that I'm loosing the transplant again. Hopefully it dropped for some other reason, but I'll know more tomorrow. The Dr.s are already thinking of what to do next, I guess there are 3 different roads we can take if the marrow does give out. They can give me more of the marrow that they took from the donor, because this time they took more than they needed and froze the rest. Or they can start looking for a new donor (I had a few donors on my list, so they might contact one of them.) Or, lastly they can give me steroids to try and get these cells to work right, but they don't want to do that because steroids can cause infection and I have been without an immune system for so long, I could get an infection.
But think positive, and hopefully tomorrow the counts will shoot back up and we won't have anything to worry about.
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Tuesday, 4/06/04
(Day 12)
Red=9.5
White=310!!
Platelets=27
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GREAT NEWS! My white blood count went up to 310 today! That is a sign that the marrow is finally grafting (setting up in my bones and making white blood cells for me). This is what we were waiting for, now the white counts just need to get above 1000 and stay there and I get out of the hospital! (Of course I'll still have to stay here in Cleveland for three months, but I'll be able to go outside and do stuff, and not be stuck in this room.)
I do have to add a little bump to this good news though. My vision is getting blurry again. This time it's different and worse, I need help walking down the hall because everything is blurry, my balance is off and I get light headed. The Dr. is going to look over the meds that I am getting and see if it is from them or something else. I figure they will give me another CT scan of my head also.
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