Monday, December 1, 2008

Medical Update

So far, I haven't really liked having leukemia.

No oncologist appointment last week. It was kind of nice to have the week off. I guess I get one if my doctor does. My next oncology appointment is this coming Thursday. Boy will she be surprised on the fun she has missed!

I don't remember if I wrote about starting a different chemo. It is a totally different kind than the ones I have tried so far in that it is not specific to my type of leukemia. My best explanation is that it is more general in the sense that it is designed to kill platelets. I have to admit that I delayed on starting to take it because I was scared by the drug insert info. But when one of my behavioral health team members told me I could die if I didn't take it, I got over the insert info pretty quick.

So, I learned that I am transplant bound. I started a new chemo. And the there was my pain management appointment. You may have noticed that I write alot at night. My already limited sleep has recently become almost non-existent. I can fall asleep on a dime, but when my meds wear off, I'm back up, taking meds, waiting for them to kick in. Once comfortable again, the smae thing again. So my pain management doctor changed/increased my evening dose on the 24th (the same day the interviews aired). I was loopy that night and overslept the next morning. But at last a good night's sleep! Unfortunately, it was a one night deal and my pain has continued to increase and I have only been able to get a few hours of sleep a day.

Last Friday my doctor was gone but I saw a colleague who gave me a steroid injection. But by Saturday night I caved and went to the ER. Lots of fun there-apparently it is officially the holiday season as more drunks and domestic violence spills into the ER's.... Anyways, spent the night there with Dr. Grumpy and declined to be admitted because I wanted to be home when the kids got up. So I left with my prescriptions, a new problem of seriously low potassium, another night of not sleeping, and a few stories to tell.

Big mistake...should have stayed. I was back with my tail between my legs at midday. This time I got Dr. Helpful, new meds, and was able to sleep three straight hours tonight. It's a start, right? But I have to tell you the irony of going back, getting on the right track of changing my meds (I would rather try that before being admitted), then going to the 24 hour pharmacy to be told that my health insurance requires pre-authorization to fill one of the two prescriptions... It never ends.

This week should be interesting. Since I received a call from SCCA to schedule me for a consultation on the 11th and then had to explain to them that I have already had my consult and what I need is a transplant, the Transplant Coordinator at Group Health has promised that her goal for today will be to try to get to the bottom of this. Frankly I was amazed that when SCCA called that their records/database didn't show that I had already been there. I even have the little green U card showing my mebership.... Do they keep their records by card catalog in the basement? Poor lady, having me explain to her that I wasn't inclined to repeat what I had already done, nor incur the out-of-pocket, travel, child care, etc., to do the same thing over again that I am sure my insurance would not be inclined to cover again. You know that $800 bill that is already paid????

Many of you have asked for a timeline for going to Seattle, transplant, etc. The best I can say at this point is that the Transplant Coordinator(TC) at my health insurance told me probably January. On top of my pre-transplant appointments and tests at SCCA, a donor must be identified and the actual procurement scheduled. Also, SCCA submits to my health insurance their proposed treatment plan. The TC has told me it is frequently denied if there is any part that is considered new or experimental. It is then up to SCCA to resubmit to the insurance with established parameters. Obviously, all these steps take time and I have been told this is the hardest time of the year to get a donor to commit to their part in the process due to the holiday season. So, the TC says I am most likely looking at January. But since the health insurance company is only a part of the equation, I also want to hear straight from SCCA what they think the timeline might be and will keep you psoted.

So hopefully with my oncologist and my pain management doctor back in town I will continue to make progress towards less pain, more sleep, and more answers. That makes Sally a happier girl. But I can't vouch for what their week might be like.

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