Tuesday, September 14, 2010


It's time for you to wake up and snap out of your dreams, especially if you've been lost in fantasies about exotic adventures and far-off lands. There's nothing wrong with letting your thoughts wander, but you have work to do now and can't afford the luxury of drifting in the impractical realms of your imagination. Nevertheless, don't lose touch with your hopes; just express what you can in the real world, for that's where your vision must manifest.

The above is my horoscope for today. Not sure what to make of it. Yet.

I am at Mayo and I have been feeling for the last few weeks as though I have been treading water. Alive, head above water, but not really going or getting anywhere. I have come here for answers fully knowing that with amyloidosis there frequently are none. My numbers are good. The Velcade appears to be doing it's job. Most of the side effects I have been experiencing have been attributed to the steroids rather than the chemo and a plan is in place to begin backing off on those. Rather than 60mg per week I go down to 40. I hope this helps because I actually felt better when I was on less steroids and my creatinine was higher than I do now with a lower creatinine. Time will tell if my kidneys have become steroid dependant and to what extent.

Although the immunofixation number was not in when I saw Dr. Buadi based on my other numbers he was confident enough that it will be a negative number that he went ahead and scheduled a bone marrow biopsy. If this number ends up coming in positive he will contact me and we will cancel the biopsy but he semed pretty positive that would not be the case.

Unfortunately the biopsy could not be scheduled until 1:00 pm Thursday so that means the Kahan and I have entire day to kill tomorrow in Ra CHa Cha (our pet name for Rochester). The bone marrow biopsy will confirm whether or not I am in response. If I am in response, great news and I will continue velcade through December and then we'll see how long it lasts. Hopefully longer than the BMT but there are no guarantees. Unfortunately I will leave here Thursday pretty much right after the test so I will not have the results. I hope to get them Friday.

As always I find myself cautiously optimistic. I can't seem to get as excited as others (my mother, the Kahan and Matt) about my positive numbers because I still do not know if I am in response. Even if it turns out I am I will still be cautious on the optimism front because I was in response from the BMT and it didn't last. In my mind I am still treading water. I'm getting better at it and my head might be a lighter higher out of the water but there are still too many unknowns to feel like I'm actually moving forward.

So back to the horoscope. My father turns 80 next August and he has been talking about renting a house in France for all of us to gather at next summer. A goal I have set for myself is to stay off dialysis until this time next year and control my kidneys with the steroids. Based on my side effects that may not be possible. But I don't think I've been in denial about that. As Alexandra says "stay nimble". I know my ability to make this trip is dependent on where I am with my illness but as the horoscope says I don't want to lose touch with my hopes. I want to continue to plan, whether it's Montana over Christmas break or France next summer and deal with set backs if or when they come. I don't feel like I have to luxury of putting off plans until I get or feel better.

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