A Donor is Found
OK, here’s the latest. Monday, I went the dermatologist to have my flaky ears looked at because my oncologist was concerned that it might be a fungal infection. Both the young doctor I saw at first (Dr. Y) and the senior doctor he consulted with (Dr. S) were interested and bit confounded by what they saw. They said it doesn’t look like a fungal infection, but they didn’t like any of the other theories they came up with either. Dr. S said to Dr. Y that it was an “interesting presentation”. They took a couple of slices off one ear to send in for biopsy. They also said it was very unlikely to be skin cancer because it is symmetrical, as in on both ears. They also talked about cold damage, a discoid lupus (DLE) (as opposed to a systemic lupus (SLE)), and other things, but like I said, there were counter-indications for all of them. We’re waiting a week or two to get results from the biopsy.
The big news, however, is that I’ve got a sibling match for my bone marrow transplant and it’s my favorite sister, Lisa!!! I stopped by this morning and told her in person and she seemed delighted. I know I am quite relieved and happy. I discovered that I have been counting on a sibling match, realizing that I shouldn’t because there was a real chance of not having one. When FCCC called this morning, she said they found a match and it was some name like Joan. I said, “Who?”, and she looked again and said, “No, I mean Lisa” (she was looking at two different patients at the same time). For a second there, I thought I had a sibling that I was not aware of. She then said the oncologist, Dr. T wants to move along quickly so they wanted to schedule me for a battery (battery may be a particularly appropriate term) of tests some time next week. By the time I got to work, they had called and left a message that I was scheduled for tomorrow (Friday) from about 8:00 AM to 3:30 PM and the tests include a pulmonary function test (PFS), a MUGA scan (heart mechanics), a chest x-ray, and EKG, blood work, and a bone marrow biopsy, as well as a visit with a social worker and Dr. T. If the MUGA scan is to determine if I’m a Muggles, I can save them the trouble because I’m certain that I am (if that confuses you, don’t worry – it’s just a bad joke that readers of Harry Potter would get).
By the way, my weekly CBC showed my counts basically back to where they were before I got sick, with my platelets down a bit to 26K from 28K.
Thank you to everybody who has volunteered to get test as a donor for me. Finding a sibling match is really the best for my transplant, and the willingness of so many friends to be a donor makes me weep with gratefulness. One thing you could do is consider registering with the National Marrow Donor Program (NMDP) if you would consider donating to save the life of someone you don’t even know.
The big news, however, is that I’ve got a sibling match for my bone marrow transplant and it’s my favorite sister, Lisa!!! I stopped by this morning and told her in person and she seemed delighted. I know I am quite relieved and happy. I discovered that I have been counting on a sibling match, realizing that I shouldn’t because there was a real chance of not having one. When FCCC called this morning, she said they found a match and it was some name like Joan. I said, “Who?”, and she looked again and said, “No, I mean Lisa” (she was looking at two different patients at the same time). For a second there, I thought I had a sibling that I was not aware of. She then said the oncologist, Dr. T wants to move along quickly so they wanted to schedule me for a battery (battery may be a particularly appropriate term) of tests some time next week. By the time I got to work, they had called and left a message that I was scheduled for tomorrow (Friday) from about 8:00 AM to 3:30 PM and the tests include a pulmonary function test (PFS), a MUGA scan (heart mechanics), a chest x-ray, and EKG, blood work, and a bone marrow biopsy, as well as a visit with a social worker and Dr. T. If the MUGA scan is to determine if I’m a Muggles, I can save them the trouble because I’m certain that I am (if that confuses you, don’t worry – it’s just a bad joke that readers of Harry Potter would get).
By the way, my weekly CBC showed my counts basically back to where they were before I got sick, with my platelets down a bit to 26K from 28K.
Thank you to everybody who has volunteered to get test as a donor for me. Finding a sibling match is really the best for my transplant, and the willingness of so many friends to be a donor makes me weep with gratefulness. One thing you could do is consider registering with the National Marrow Donor Program (NMDP) if you would consider donating to save the life of someone you don’t even know.
2 Comments:
Excellent news on your donor and best wishes for the future.
By the way, one of the issues I am struggling with at the moment is how to handle my job! I was initially told by my oncologist that I should prepare to be off work for 3 months. I am now advised that I could be off for 6 months. I am not sure how to handle this situation. I work in IT for one of our major banking groups and need to be available on a 24x7 basis. I am not sure that they would be able to 'keep' my position open for for that long. As I said, I am still debating this issue within myself. How about yourself? Is your employer aware of you circumstances?
Regards for now,
Eric (from Jonannesburg, South Africa)
Eric,
Thanks for your comment. I worry about my job also. I've been told not to expect to be back to work for a year! I also work in IT (I work for a landscaping company) and am the only full software developer on staff, although the IT director was previously a developer and can fill in some. They are fully aware of my situation and are being quite supportive. What I'm hoping is that I will be up to working from home on a VPN connection for much of my recovery period, so that I can still contribute as well as for keeping the income stream closer to what it is now (the short and long term leave policies involve reduced salary after one week of sick leave).
I don't know if South Africa has laws like we do in the states that require a company to keep a job available for some period of time, but even so, I could be replaced after six months of disability leave. Since I can't plan much in this regard, I'm going to just see how things go and do what I can when I can.
By the way, another interesting parallel between us is that my first 15 years in IT were in banking (Cobol development).
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