Day 57
Today is Day 57 which means it’s been 9 days since I last posted. Sorry about the delay. My cold is mostly gone, I just cough occasionally.
I had my weekly clinic appointment on Thursday and there were only a few changes. My hemoglobin was up to 11.4 which may be due partly to the reduction in my immuno-suppressant drug and partly to the shot of Procrit I got the week before. This time, they said to stop taking the blood pressure medicine I was on and reduced my immuno-suppressant again from 4 to 3 (contrary to what I said last week, my dosage was decreased from 5 to 4 at that time not 6 to 5). I believe this is partly due to the fact that my liver (correction - I should have said kidneys) is still indicating some distress and partly that the plan is to reduce that drug over time anyway.
WBC – 5.2
Hgb – 11.4
Plt – 233
My appetite has improved to where I get hungry sometimes, and my sleep has definitely improved, although I still don’t come close to sleeping through the night. I now usually wake up only 2 or 3 times per night and then go right back to sleep.
Exercise has become a bit difficult because of my two current areas of pain. Hemorrhoids aggravated by intense coughing fits have become quite uncomfortable and make bike riding problematic. And I have a strange problem with the soles of my feet that makes extended walks almost unthinkable. The soles of both of my feet often have a burning sensation that makes them quite sensitive and makes it hard to walk even short distances. This has been going on for 3 or 4 days straight, although it seems a bit better today than before. The doctor’s best guess is that one of the drugs I am taking is affecting nerve endings in my extremities. The problem may have been triggered by walking for a half hour two days in a row, possible overstimulating the nerves in my feet. This may also be why my hands are so poor at gauging temperature (like my skin often feels very hot when it is not and I can’t tell when water is hot or just warm).
So many things in my body are so different from what they were pre-transplant that it seems like nothing really surprises me any more. I can’t figure them all out, but I am generally able to accept them fairly easily. I hope this continues to be true even if the changes become more severe with GvHD.
As always, thank you all for your continued support.
Love,
Justin
I had my weekly clinic appointment on Thursday and there were only a few changes. My hemoglobin was up to 11.4 which may be due partly to the reduction in my immuno-suppressant drug and partly to the shot of Procrit I got the week before. This time, they said to stop taking the blood pressure medicine I was on and reduced my immuno-suppressant again from 4 to 3 (contrary to what I said last week, my dosage was decreased from 5 to 4 at that time not 6 to 5). I believe this is partly due to the fact that my liver (correction - I should have said kidneys) is still indicating some distress and partly that the plan is to reduce that drug over time anyway.
WBC – 5.2
Hgb – 11.4
Plt – 233
My appetite has improved to where I get hungry sometimes, and my sleep has definitely improved, although I still don’t come close to sleeping through the night. I now usually wake up only 2 or 3 times per night and then go right back to sleep.
Exercise has become a bit difficult because of my two current areas of pain. Hemorrhoids aggravated by intense coughing fits have become quite uncomfortable and make bike riding problematic. And I have a strange problem with the soles of my feet that makes extended walks almost unthinkable. The soles of both of my feet often have a burning sensation that makes them quite sensitive and makes it hard to walk even short distances. This has been going on for 3 or 4 days straight, although it seems a bit better today than before. The doctor’s best guess is that one of the drugs I am taking is affecting nerve endings in my extremities. The problem may have been triggered by walking for a half hour two days in a row, possible overstimulating the nerves in my feet. This may also be why my hands are so poor at gauging temperature (like my skin often feels very hot when it is not and I can’t tell when water is hot or just warm).
So many things in my body are so different from what they were pre-transplant that it seems like nothing really surprises me any more. I can’t figure them all out, but I am generally able to accept them fairly easily. I hope this continues to be true even if the changes become more severe with GvHD.
As always, thank you all for your continued support.
Love,
Justin
4 Comments:
You are being so very brave. I had to shed a tear. Read some texts that you wrote in July, your wonderful family. The Collinses on Buck Rd are thinking about you and wishing you well. Love.Helena
Justin,
During my one brief social foray over the just-past Charter Day weekend, I ran into three people who asked especially that I convey their good wishes, prayers and love to you: Jack & Karen Elder and Mark Spracklin. Knowing the friendship you two share, I encouraged Mark to call you and see if you would like a visit, but being the considerate and very good guy that he is, he was concerned about putting you out or contributing to your being overwhelmed with visitors.
Love,
Hugh
Hi Justin,
We got a post to my wife's Blog from your brother Hugh. I started a page for her and then a Blog for the same reasons you did. www.mbensel.com/marianne.htm She has just been diagnosed with lung cancer. I found reading your blog inspiring. I will keep you and your family in my prayers.
Hi Justin,
It's Marianne. Your brother Hugh got an email from someone that knows my husband Mark. I saw your comment on my blog and thank you for the encouragment and prayer, and yes, I too will pray for you. The worst thing I think about right now is the cancer is in there, and when can I start some kind of treatment? I wish it could be tomorrow, but there is a process, which I have to be patient. God will lead me down the right path.
Anyway, I couldn't get through all your postings, I just started tearing up, so later I will attempt some more. For now, good luck!
Marianne
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