Almost happy birthday!
Yes, the 15th is my bithday(my real birthday) and an occasion that I would not have been able to celebrate except for the great doctors that I have had and the success of the treatment that they have prescribed. Needless to say, with all of the doctor's visits this past week, many people have wished me a happy birthday in advance.
Otherwise, it has been quiet. This week it's off to Mass Eye And Ear to see how I have progressed in that area. Also, I get three crowns put on this week as well. Visting, doctors, dentists, etc. just never seems to end. But, thank God, I'm around to be able to do these things.
Tonight we played our monthly cards with friends. It's always a good time to get together totalk about tyhings and have some fun as well.
I'll sign off now in order to get ready for the big day...
Bob
May 12, 2011 12:05 AM
Photophoresis!
That's the word of the day. I have a subcutaneous thickening under my skin around my thighs, abdomen, chest, and arms. Overall, it hampers your mobility and could possibly hamper your ability to breathe properly. Over time it could go away without any additional treatment, it could possibly get worse(doubtful as it appears to have plateaued at this level for a while), or it could stay like this forever. What's another solution? Photophoresis!
What does it do? It offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD(graft vs host disease).
How does it work? Blood is taken from one arm and processed through a cell separation machine. The machine removes and treats the lymphocytes and returns them and the rest of the blood back to your other arm. When the blood initially enters the machine, it is mixed with an anticoagulent to prevent it from clotting. Then the machine collects the lymphocytes and mixes them with a drug. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The mixture is then exposed to UV light before being reinfused into your body.
This is just another way of fending off GvHD. It has several benefits, however. There are NO side effects and it will reduce my need to take prednisone - a wonder drug that has not so wonderful side effects. My doctor even admits that in the long run one can consider it to be poison.
Of course, there is a down side. The first week, I need three treatments(each one taking at least two hours) followed by 12 weeks of two treatments each. All of this must be done in Boston thus extending the entire process to at least 4 hours. Lastly, it doesn't always work for everyone. But that can be determined over time and the procedure can be stopped immediately if there are no positive results.
I must admit that the thought of doing this would have grossed me out three years ago. But after having had my blood drawn so many times over the past two and a half years, it just doesn't matter anymore.
So, that was one outcome of my doctor's visit today. the other was that there continues to be no sign of the leukemia which, obviously, has been the goal of this whole process. The bottom line is that the mission has been accomplished but we've taken a few hits along the way. If the photophoresis works and I can get back to full "normal", life will be fine. Note, however, that it will have no effect on the status of my eyes.
As to the status of my eyes, today was one of those good days. No pain at all as long as I continue to pump in the drops. However, when you feel no pain, you sometimes forget that you are no longer like normal people and you forget to load up on the drops when things are going well which can then lead to some irritation.
Change of subject, my mother is out of the hospital and in a rehab center and faring very well after her surgery. She is the ideal patient, always doing what the doctors tell her to do which gets her back on her feet ASAP. When will she go home? Not sure yet. But it's only been a week since her surgery so we can't push it.
It's been a good day. I don't go back to the doctor for three months which is always a good sign.
As usual, the plan is to take things one day at a time...
Bob
That's the word of the day. I have a subcutaneous thickening under my skin around my thighs, abdomen, chest, and arms. Overall, it hampers your mobility and could possibly hamper your ability to breathe properly. Over time it could go away without any additional treatment, it could possibly get worse(doubtful as it appears to have plateaued at this level for a while), or it could stay like this forever. What's another solution? Photophoresis!
What does it do? It offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD(graft vs host disease).
How does it work? Blood is taken from one arm and processed through a cell separation machine. The machine removes and treats the lymphocytes and returns them and the rest of the blood back to your other arm. When the blood initially enters the machine, it is mixed with an anticoagulent to prevent it from clotting. Then the machine collects the lymphocytes and mixes them with a drug. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The mixture is then exposed to UV light before being reinfused into your body.
This is just another way of fending off GvHD. It has several benefits, however. There are NO side effects and it will reduce my need to take prednisone - a wonder drug that has not so wonderful side effects. My doctor even admits that in the long run one can consider it to be poison.
Of course, there is a down side. The first week, I need three treatments(each one taking at least two hours) followed by 12 weeks of two treatments each. All of this must be done in Boston thus extending the entire process to at least 4 hours. Lastly, it doesn't always work for everyone. But that can be determined over time and the procedure can be stopped immediately if there are no positive results.
I must admit that the thought of doing this would have grossed me out three years ago. But after having had my blood drawn so many times over the past two and a half years, it just doesn't matter anymore.
So, that was one outcome of my doctor's visit today. the other was that there continues to be no sign of the leukemia which, obviously, has been the goal of this whole process. The bottom line is that the mission has been accomplished but we've taken a few hits along the way. If the photophoresis works and I can get back to full "normal", life will be fine. Note, however, that it will have no effect on the status of my eyes.
As to the status of my eyes, today was one of those good days. No pain at all as long as I continue to pump in the drops. However, when you feel no pain, you sometimes forget that you are no longer like normal people and you forget to load up on the drops when things are going well which can then lead to some irritation.
Change of subject, my mother is out of the hospital and in a rehab center and faring very well after her surgery. She is the ideal patient, always doing what the doctors tell her to do which gets her back on her feet ASAP. When will she go home? Not sure yet. But it's only been a week since her surgery so we can't push it.
It's been a good day. I don't go back to the doctor for three months which is always a good sign.
As usual, the plan is to take things one day at a time...
Bob
May 9, 2011 12:45 AM
On the mend!
It being Mother's Day (and with my mother in the hospital), we went to visit her and saw that she was progressing well after her surgery. A lot of the tubes were removed and she was now on a liquid diet. Obviously not there yet, she still has taken a big step forward. Solid food, rehab, and then home seems to be the path ahead.
We attended a 50th birthday party on Saturday. That year is so in the rearview mirror for me that I almost forget what it was like to be "only" 50! My own birthday(the real one) is coming soon and just to be here and able to celebrate it is such a blessing for me. The American Cancer Society bills itself as "The Proud Sponsor Of Birthdays" and they are so right! Without all the medical advancements in that area, I wouldn't be here today.
And not being here today would have caused me to miss a fun day on Saturday with two of my granddaughters. They visited for a few hours in the afternoon and we all had a great time. Kids make us fell young again. Their energy levels and zest for life present with a perspective on things that we should be more aware of. That's why it's so much fun to have them around. And, it doesn't hurt that they like to be around us too. Why? I not quite sure, but I won't complain.
All in all, a great few days in so many ways.
Life is good...
Bob
It being Mother's Day (and with my mother in the hospital), we went to visit her and saw that she was progressing well after her surgery. A lot of the tubes were removed and she was now on a liquid diet. Obviously not there yet, she still has taken a big step forward. Solid food, rehab, and then home seems to be the path ahead.
We attended a 50th birthday party on Saturday. That year is so in the rearview mirror for me that I almost forget what it was like to be "only" 50! My own birthday(the real one) is coming soon and just to be here and able to celebrate it is such a blessing for me. The American Cancer Society bills itself as "The Proud Sponsor Of Birthdays" and they are so right! Without all the medical advancements in that area, I wouldn't be here today.
And not being here today would have caused me to miss a fun day on Saturday with two of my granddaughters. They visited for a few hours in the afternoon and we all had a great time. Kids make us fell young again. Their energy levels and zest for life present with a perspective on things that we should be more aware of. That's why it's so much fun to have them around. And, it doesn't hurt that they like to be around us too. Why? I not quite sure, but I won't complain.
All in all, a great few days in so many ways.
Life is good...
Bob
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