Hooray! I am off the oxygen! Mt sats are good enough and that's all I needed to hear. But all the equipment and tanks will remain in the event that I need them again. I have to admit it seemed strange to me that I would need it all so urgently and then in short time not need it at all. I will add that to my ever-growing list of weird things.
My regular oncologist, along with my transplant doctor, and Craig and I have decided to give a final last try on the final last chemo available. It is a newly approved drug, not long out of clinical trials and government approval. While there is little optimism that I will tolerate it, it could happen. Regardless it is important to do whatever can be done to keep my counts in a reasonable range. And we never want to look back and wonder "what if".
It has been on order and should be in soon. Like the others, with the cost of approximately $4,000 per month, no one keeps it in stock. Hopefully it will be in tomorrow and we will give it a go. It's an odd mental place to be in to know you have to try, you have to hope, but that there is a good likelihood that it will make me very sick and possibly result in another Sacred Heart vacation. But I have to try.
I am learning more about the range that one's counts must be in to be deemed a good investment by the health insuarnce company and also about how what range your counts are in affect the outcome of the transplant. So pretty much whatever I have to do to keep within those I will need to do.
I had my consultative exam last week for Social Security Disability. Unbelievable. And it's our tax dollars at work! Of an hour and a half appointment, I would say a third went to me completing forms and questionnaires. It seems like I could have completed them in advance and brought them with me. I'd say another third of the time was spent with me talking about how my illness has affected me emotionally, by answering his questions. The other third was spent by him telling me about himself, his education, his work at NIH, how big of a Nebraska fan is, his wfe's battle with breast cancer. The other half was my answering strange questions such as "Who is the President?" I literally asked him if he was kidding. I really thought he was.
I couldn't begin to guess if I did well in the sense of his exam results supporting my claim for disability benefits. So now we wait, again, for the decision to my appeal.
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