And What Followed...

Friday, June 9, 2006

the Difficult news

Dear Friends,

I can't believe I'm actually writing this. It just feels so unreal. Sorry it took so long for me to get over the shock.

Here is what happened on Monday:

In May, the last I was at City of Hope, I was told that my next appointment would be a simple follow-up visit, with blood work, a possible injection and on to schedule my next PET/CAT scan to restage me and figure out if I should do another round of chemo.

Instead, on Monday, Dr. Nade marched in with a Transplant nurse and told me that we couldn't wait any longer for a true match. That I needed to go into transplant immediately with the donor that has the mismatches. That the longer I waited, the less of a chance I would have of survival. Suddenly she was pointing to a calendar and saying I was going to be admitted by next Tuesday for chemo conditioning and transplant by the 28th.

Then a packet of papers got shoved in front of my face… release forms, consent forms, liability bullyragging, a bunch of lines for me to sign. Then the transplant nurse handed me a bag of stuff I needed to take home as part of all the tests I was going to be scheduled for over the next week, pulmonary, blood, urine, EKG/EKO, PET, CAT, Chest X-Ray etc. My head was spinning.: No more drives. It's too late. We have to go into transplant NOW.

Reality hit hard.

Everything suddenly came down, came to a head, became accelerated, became real, happening so fast. I thought I was going to have a blood test and go home but instead there I was sitting on the edge of an exam table, being dictated my schedule for the next and possibly last few weeks of my life.

So here is the hard news. Dr. Nade said that the mismatch means increased morbidity, increased chance of (possibly fatal) infections, increased short and long term complications, increased Graft vs. Host disease and increased chance that the
marrow won't even graft. There is a major mismatch at "C" and another mismatch at "B". The odds given were 30% chance of surviving the actual procedure and 50% chance of being alive and well a year from today. I hate statistics.

I am planning to rush up to Fred Hutchison Cancer Center in Seattle for a second opinion. (Thank you Mike for the First Class ticket!) At the very least to give me some peace of mind that this is the best thing to do given the unfortunate circumstances. Dr. Nade said I would quickly succumb to the lymphoma if we don't do the transplant now, but I refused to be admitted so soon. I need time to get my body and mind prepared. However, unless something happens to change things, it appears I will be admitted for the transplant procedure the last week of June.

If you still are planning marrow drives or e-mailing friends, please do so in my honor. There are other patients who are still desperately searching for their match and it is not too late for them…. yet. Also, you never know… maybe something miraculous can still happen…

Whatever the outcome, I love you guys and just know that we together have made such a huge difference in the world and in the lives of so many others.


P.S. I would really love to be able to see each and everyone of you. Spend time and talk and just be. Unfortunately with this sudden change in situation, with all the immediate tests, doctor appointments etc, time is crunched and I just don't have the
luxury. Therefore, I plan to have an open house soon. A day when friends can stop by and we can hug and share and forget about statistics and just enjoy life. I'll keep you all posted. xo

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