Stem Cell Harvest Process Begins
Well, the latest news is that the rash on my ears was diagnosed as discoid lupus erythematosus (DLE). This is not the serious form of lupus which is systemic lupus erythematosus (SLE), and it is treated with an ointment. The dermatologist doesn't believe that it is related to the MDS and feels it should have no impact on the transplant. He did, however, send me for labs to test for SLE, even though he is pretty sure I don't have that.
I saw my hematologist yesterday for the last time for a while. My white blood count was down slightly (from .8 to .7), my platelets remained at 33, and my hemoglobin dropped a bit again (from 9.0 to 8.6), so I'm getting quite anemic (I do get winded very easily). However, I think I'm lucky that my red blood cells (including hemoglobin) were the last blood part affected by the MDS, because for many, it is the first part affected and necessitates blood transfusions which are hard on the body.Yesterday, my sister/donor, Lisa started her four day series of Neupogen injections. My wife went with her and she learned how to give herself injections (intramuscular injection), because she needs to have them for the next three days. Last night, she said she felt great and that giving herself shots is not as difficult as she thought it might be. Lisa is being great about this whole thing, even though it may involve a few days of some level of discomfort. I will be forever grateful for her contribution to my chance at being healed. I am still on schedule to start my "conditioning" a week from today. In the meantime, there is an orientation on Tuesday, August 10 that we are going to, along with as many of our 4 adult children as can make it, and Lisa. We will learn a lot of practical things like what to take to the hospital, what the hospitalization portion is like, what the homebound part may look like, etc. We will have a chance to meet with someone who has been through it, along with the caregiver. We will also get a tour of the hospital rooms.
When I do go in on Thursday, I will be getting a platelet transfusion to boost my platelet count to at least 50 so they can install a catheter in my chest (called a Hickman catheter) for access to my bloodstream. Because I will need so much put into my blood as well as having blood drawn, and this will necessary for months, this Hickman catheter will enable that and be left in as long as necessary. After the catheter is installed, I will start my six day chemotherapy regimen, followed by a day of rest and then the stem cell transplant will be on August 19. If all goes well, I will be sent home after 2 or 3 more weeks in the hospital.
I have been having some wonderful, even heavenly, interactions with family and friends lately. One of the things that is hard is that I’ve been told that I have to be more careful around people because of the risk of getting sick due to my neutropenia (low white blood count). What this means is that I’m not supposed to be hugging or shaking hands or having any physical contact with others. I find this to be a difficult and totally unreasonable requirement, especially if it’s going to be true for up to a year. However, since getting sick could be fatal, we will have to figure out how to work things out so that I can get physical contact safely.
I saw my hematologist yesterday for the last time for a while. My white blood count was down slightly (from .8 to .7), my platelets remained at 33, and my hemoglobin dropped a bit again (from 9.0 to 8.6), so I'm getting quite anemic (I do get winded very easily). However, I think I'm lucky that my red blood cells (including hemoglobin) were the last blood part affected by the MDS, because for many, it is the first part affected and necessitates blood transfusions which are hard on the body.Yesterday, my sister/donor, Lisa started her four day series of Neupogen injections. My wife went with her and she learned how to give herself injections (intramuscular injection), because she needs to have them for the next three days. Last night, she said she felt great and that giving herself shots is not as difficult as she thought it might be. Lisa is being great about this whole thing, even though it may involve a few days of some level of discomfort. I will be forever grateful for her contribution to my chance at being healed. I am still on schedule to start my "conditioning" a week from today. In the meantime, there is an orientation on Tuesday, August 10 that we are going to, along with as many of our 4 adult children as can make it, and Lisa. We will learn a lot of practical things like what to take to the hospital, what the hospitalization portion is like, what the homebound part may look like, etc. We will have a chance to meet with someone who has been through it, along with the caregiver. We will also get a tour of the hospital rooms.
When I do go in on Thursday, I will be getting a platelet transfusion to boost my platelet count to at least 50 so they can install a catheter in my chest (called a Hickman catheter) for access to my bloodstream. Because I will need so much put into my blood as well as having blood drawn, and this will necessary for months, this Hickman catheter will enable that and be left in as long as necessary. After the catheter is installed, I will start my six day chemotherapy regimen, followed by a day of rest and then the stem cell transplant will be on August 19. If all goes well, I will be sent home after 2 or 3 more weeks in the hospital.
I have been having some wonderful, even heavenly, interactions with family and friends lately. One of the things that is hard is that I’ve been told that I have to be more careful around people because of the risk of getting sick due to my neutropenia (low white blood count). What this means is that I’m not supposed to be hugging or shaking hands or having any physical contact with others. I find this to be a difficult and totally unreasonable requirement, especially if it’s going to be true for up to a year. However, since getting sick could be fatal, we will have to figure out how to work things out so that I can get physical contact safely.
3 Comments:
And so it begins. I suddenly have the realization that this is real, if that makes any sense. Until now, this transplant was something that was going to happen some time in the future. But now, the die is cast, so to speak.
How much more so this must be for you, Justin, and for Jody. You know I love you and my thoughts and prayers will be with you continually — and with Lisa for a few days now.
Lisa, here. I've given myself two injections now, and really it's even easier than getting one from someone else. No problem. No side effects yet, and in fact I feel as though I'm on a little bit of a high. Since June I've been living off Justin's optimism, but suddenly now I feel as though I have enough of my own to go around, so anyone who needs a little should call and borrow a cup. Liza, if you read this, it was wonderful to hear from someone who's been there herself, and to know that you think Justin's going to do well too.
Love,
Lisa
Dear Justin,
I am so glad that all is going well as you proceed with the transplant preparations. I agree with Liza that your attitude will surely serve you well, and you will recover with amazing speed. I am praying for you and your family. I think of you every day with much love and hope for the future.
Love
Val
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