Well, the hair is gone. It was falling out in sort of a reverse bozo the clown look so it had to go. My night nurse came in at like 11:00pm and suggested shaving my hair and before I new it I was in a chair covered in towels and half of my hair was gone. So that was quickly settled. There are still a few random hairs left and some areas are cut but still look similar to crop circles. I can't really blame the nurses, they went to nursing school not beautician school.
Also some good news, I was released from the hospital on 9-1-2008 (opening day of dove season). Although it will be a long time before I get to do any hunting, it is nice just being away from the hospital. I'm back at the Hope Lodge and yesterday I spent most of the day doing "rehab". Nick and I played rockband for about 5 hours!! Of course I played the drums and I have never been so tired in all my life but don't tell my mom because I'm not supposed to get worn out. Shhhh, she'll never know. I think it'll be a while before I do 5 hours of rockband again, at least 5 hours of drums.
I wanted to add an FYI... Everyone knows a cancer patient goes through a lot. Physical and mental stresses related to trying to get better and worrying about getting proper, safe care. This by itself is very stressful and can consume your mind but there are many other things that add to your mental stress. I in no way feel sorry for myself or pity myself but I want to let people know what is possible in their life. During a very involved and demanding procedure like a bone marrow transplant your life is temporally postponed. You can't work but you have overwhelming bills to pay, you can't go to school, you fight to keep relationships intact, you worry about adverse side effects of chemotherapy, you think about getting your old life back and many other things are running through your mind. As if the physical strain is not enough there are lots of mental stresses that can be overwhelming. There are many support groups and organizations that help with these types of things but nothing is better than a good support group of family and friends. I try to stay positive all the time and keep telling jokes but sometimes you just can't and I need to just feel bad for a little while.
Wednesday, September 3, 2008
Tuesday, August 26, 2008
8-26-2008
It's official, I'm losing my hair...
Three or so days ago my hair began to trickle out, a hair here and a hair there. But the last two days it has begun to pour out with a vengeance. I estimate that I have lost approximately 80% of my hair in the last two days. I was not too excited about this to say the least. Among the list of chemotherapy side effects which hair loss was not one of them was excessive facial hair growth. Ha, in other words for the ladies out there, you may lose your hair but you might in turn have excessive facial hair growth (with this same type of treatment). Weird.
This is not the first time my hair has fallen out due to chemotherapy so I'm not worried about it but people tend to look at you differently. When your hair falls out people give you a sympathy look and feel sorry for you becuase you look very sick. You get the ocassional comment about it and that's the last thing you want to think of at the time. Last time I expected my hair to fall out but not this time and it is a pretty big shocker.
I don't mean to scare anybody (esspecially the woman) out there about losing your hair. It does not always happen, it depends on the precribed chemotherapy regime.
Three or so days ago my hair began to trickle out, a hair here and a hair there. But the last two days it has begun to pour out with a vengeance. I estimate that I have lost approximately 80% of my hair in the last two days. I was not too excited about this to say the least. Among the list of chemotherapy side effects which hair loss was not one of them was excessive facial hair growth. Ha, in other words for the ladies out there, you may lose your hair but you might in turn have excessive facial hair growth (with this same type of treatment). Weird.
This is not the first time my hair has fallen out due to chemotherapy so I'm not worried about it but people tend to look at you differently. When your hair falls out people give you a sympathy look and feel sorry for you becuase you look very sick. You get the ocassional comment about it and that's the last thing you want to think of at the time. Last time I expected my hair to fall out but not this time and it is a pretty big shocker.
I don't mean to scare anybody (esspecially the woman) out there about losing your hair. It does not always happen, it depends on the precribed chemotherapy regime.
Friday, August 22, 2008
8-22-2008
Well, I was set free from the hospital yesterday around 2:30pm... Yeah!! Too much time in the hospital will drive you NUTS! But before I could even celebrate my release I was back in :(
I checked back in the hospital today around 10:00 am (not even 24 hours outside the hospital walls) The reason: I have been doing very well, better than expected :) and the current attending physcian is new to this type of regime so his best judgement was to release me. There are many benefits to staying outside the hospital. But my normal physcian (who was out of town the last few days) found out about my release and had a cow... He's very worried about me not being well protected from infection and also if I do contract an infection it is treated quicker and more easily when I'm in the hospital. Therefore I'm back in the hospital and the same room.
I checked back in the hospital today around 10:00 am (not even 24 hours outside the hospital walls) The reason: I have been doing very well, better than expected :) and the current attending physcian is new to this type of regime so his best judgement was to release me. There are many benefits to staying outside the hospital. But my normal physcian (who was out of town the last few days) found out about my release and had a cow... He's very worried about me not being well protected from infection and also if I do contract an infection it is treated quicker and more easily when I'm in the hospital. Therefore I'm back in the hospital and the same room.
Wednesday, August 20, 2008
8-20-2008
The last few days have gone very well. I have been very forunate experiencing only minimal nausea and the ocasional headache. The days have been going by very slowly and I've been pretty bored which is a good thing. Boring days in the hospital are good, for sure. I have been doing so good that I may be able to leave the hospital early. The doctor has made the decision to switch all I.V. medicine to pill form and see how I feel the next day or so. If these next few days go well I'll be able to go to the Hope Lodge.
The Hope Lodge is a facility downtown (K.C.) that is owned by the American Cancer Society. This facility is used by cancer patients in order to stay close to the hospital. I must be within 30-45 minutes of the hospital at all times for approximately 100 days after transplant. Since we live slightly outside of that then I must stay at the Hope Lodge. This would not be the first time I stayed at the lodge, I stayed there during my last transplant. The facility is very nice and clean but you must have a 24 hour caregiver which in my case will be a combination of my mom, dad and Korey.
The Hope Lodge is a facility downtown (K.C.) that is owned by the American Cancer Society. This facility is used by cancer patients in order to stay close to the hospital. I must be within 30-45 minutes of the hospital at all times for approximately 100 days after transplant. Since we live slightly outside of that then I must stay at the Hope Lodge. This would not be the first time I stayed at the lodge, I stayed there during my last transplant. The facility is very nice and clean but you must have a 24 hour caregiver which in my case will be a combination of my mom, dad and Korey.
Wednesday, August 13, 2008
8-13-2008
Although the transplant went as planned it was not as I imagined. It was very intense from the beginning of the day. I was very nervous all day in anticipation of the transplant. All I could think about was the last tranplant and how I felt before, during and after. Needless to say, this was not a pleasant feeling. Once the time came to start the infusion I was a nervous wreck but I had a good group of support there for help. At the start of the infusion I felt ok but soon after my body began to chill beyond control and I was trembling even after four to five blankets were added to my body. After the infusion I had a severe headache which felt like my eyes were going to pop out at anytime and my body ached like I had been running for days.
I feel better today but I am very tired and have little energy. I feel optimistic for the next ten days. It takes approximately seven to ten days to ingraft.
I feel better today but I am very tired and have little energy. I feel optimistic for the next ten days. It takes approximately seven to ten days to ingraft.
Monday, August 11, 2008
8-11-2008
Things went well today... I got my last dose of ATG and I am getting all prepped up for receiving my sister's cells tomorrow. The doctors and nurses are anticipating that it will go well.
My sister will come in early and have a "pick" line put in place in order to harvest her stem cells. The line will be placed in her neck (jugular vein) to insure that there is adequate amount of fluid flowing through the line to run the machine. This prevents collapsing the vessels as well. The pick line should be a triple lumen; one for removing blood, one for returning blood after the removal of the stem cells and lastly one for fluids or any type of IV assistants. Her stem cells will be counted and then given directly to me through an IV bag. They will estimate the number cells to be injected and several infusions may be needed to reach a safe level.
Thanks for all the prayers and support.
My sister will come in early and have a "pick" line put in place in order to harvest her stem cells. The line will be placed in her neck (jugular vein) to insure that there is adequate amount of fluid flowing through the line to run the machine. This prevents collapsing the vessels as well. The pick line should be a triple lumen; one for removing blood, one for returning blood after the removal of the stem cells and lastly one for fluids or any type of IV assistants. Her stem cells will be counted and then given directly to me through an IV bag. They will estimate the number cells to be injected and several infusions may be needed to reach a safe level.
Thanks for all the prayers and support.
Sunday, August 10, 2008
8-10-2008
Today and yesterday evening was pretty rough. I'll begin with last light.
Last night no matter what I ate it didn't settle well on my stomach which started the afternoon badly. I received another dose of the ATG and that just sent my system off. I woke up on and off feeling very sick and running back and forth to the bathroom mostly due to the increased fluids. But eventually I let my food lose, then again, and again. But I felt much better afterwords, as you could imagine. This to say the least, led to the morning. The next day I was very tired and drowsy for the most of the morning. As the day progressed I began to feel much better. I changed my eating a little (more liquids less solids) and I believe that this resulted in my deceased nausea. Needless to say I've had a rough couple of days and look forward to having a few days of ease (if possible). I still plan on receiving my sister's stem cells on Tuesday.
Last night no matter what I ate it didn't settle well on my stomach which started the afternoon badly. I received another dose of the ATG and that just sent my system off. I woke up on and off feeling very sick and running back and forth to the bathroom mostly due to the increased fluids. But eventually I let my food lose, then again, and again. But I felt much better afterwords, as you could imagine. This to say the least, led to the morning. The next day I was very tired and drowsy for the most of the morning. As the day progressed I began to feel much better. I changed my eating a little (more liquids less solids) and I believe that this resulted in my deceased nausea. Needless to say I've had a rough couple of days and look forward to having a few days of ease (if possible). I still plan on receiving my sister's stem cells on Tuesday.
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