seattle art museum jumps

Hi, to all,

Yes, yesterday I had a lumbar puncture where one of two or three doses of chemo, about 2cc are instilled into the cerebral spinal fluid to eliminate leukemia cells there. I felt fine afterwards except for feeling worn out, it was wonderful that Cathy was with us, it helps so much. If you like a focus for prayers other than generalized, pray this chemo does clear the spinal fluid, otherwise they can't go on with the transplant. Dr. Ridelle did say that in his experience that is the rule, that it does clear it.

I slept for 2 hrs when returned to the flat and Cathy went home after making us some coffee for that was the Dr. instructions to help prevent a spinal headache, which I haven't had, but was told they even give caffine iv for those who do have trouble with it.

This morning I woke up refreshed and ready to DO something on this rare free day. The 75year old Seattle Art Museum has been closed for two years for expansion and this morning at ten am was the grand reopening. They are actually going to be open for 48 hrs stright with entertainment around the clock and free admission. One of my favorite groups wa performing there this morning @ 11am so intending to take the monorail a few blocks away that would bring us fairly close, we headed out on foot at 8:30 only to find it does not run till 10 o'clock. So we walked for 45minutes and stood in line for a while as they had timed entrance. Then we saw and heard the govenor and mayor give short speeches, heard the Total Experiene Gospel Choir for a half hr toured the museum and lunched in their new restaurant. The walk felt great but so did the monorail going back. The humorous thing on this outing was and for those not familiar with the SAM, there is a huge moving sculpture in front of it depicting a human form that moves, hammering away at something, it is supposed to represent the working man, class whatever, it must be 80 feet high. So that is back in motion. Across the street there is a small entertainment business called the Lusty Lady and they have a marquee with two sides, one side said Congratulations Seattle Art Museum! On the other side it said: Keep on hammering- big guy!

I took another nap when we got home but later felt compelled to make chocolate chip cookies to christen this kitchen and see how the oven works.

To get back to business, I have a calendar from SCCA which goes like this: 5/9 lumbar puncture with chemo again, blood draw to test for mice antibody. 5/10 nothing. 5/11 meeting where they bring it all together- all the test results for which I have asked for copies of everything. 5/12 nothing. 5/13 start oral iodine drops to protect my throid from radiation for a month. 5/14 nothing. 5/16 test dose of radiation that goes primarily to leukemia cells,they say here, all day infusion. Oh, and a bone marrow biopsy.

5/16 hospital-gamma scans. That tests how much radiation is going to the organs especially the liver and based on those results which they take three days to do, the radiaion dose is calulated. 5/19 to 5/22 nothing

5/24 admit to univercity of washington medical center for therapy dose of antibody radiation again, seeks out leukemia cell and is the only treatment that does this, for which I must go into isolation for 6 or 7 days. No one comes into the room. This is what I was fortunate to be able to talk to this lady "Hope" about. She did all this and did well. She said you get bored in the room but you feel ok. It looks like any hospital room and has tv and a phone but you con't take stuff in there with you likt to entertain yourself with. I guess I could excercise.

A part of me hates to subject anybody reading this to this mindboggling sort of worst case stuff,I just say to you it made me feel so good to talk to one person who has been there and come out of it and when I spoke with her she was through the transplant and is feeling good. So even in what sounds so awful I am getting some reassurance snd thats for you too. So I guess do like I am, take one day at a time and celebrate the successes and sometimes even bad news can be good news in disgise. We just don't know where a development might lead, it can be positive later when it didn't look that way at first.

During Noah's life, his nurse wrote three words on a piece of paper:

ACCEPT CELEBRATE WONDER

Noah's family did their best to internalize those concepts and to act them out as much as possible, I find these words carry me forward now.

Tomarrow is Michael's birthday and we will be celebrating at home with he and Carol, Jeanni Greg John David Rachal William Alex Sammy and Rod and Colleen. Out on the deck. Maybe have a fire in the firepit I hope.

Love, and God Bless You, Margie