Thursday, September 18, 2008

My Recovered Post re Trip to Fred Hutch

Thanks to the help of Mishka, a Blogger Help Group Super Star, here is my retrieved entry regarding the trip to Fred Hutchinson:

WOW! What a place the Seattle Cancer Care Alliance and Fred Hutch is!
My transplant doctor, Dr. Jerry Radich, was incredible. He came in the
conference room wearing normal clothes, introduced himself as "Jerry",
and went from there.

Craig and I had our many questions answered. Things were explained in
a way we could understand. Graphs galore on the whiteboard. Processes
detailed, options reviewed, and statistics outlined. Three hours of
intense information!

Then we met with a Finacial Counselor. It looks like our health
insurance may finally give us really good coverage on something! Our
fingers are crossed and we will know more later. Unfortunately it was
confirmed that not all medical costs are covered, nor the required
caregiver (can be anyone-they train the caregivers) who will have to
be with me the whole time I am in Seattle (approx. 4 months), nor
travel and lodging. But at least they didn't ask for a $100,000

Then we toured the facilities, saw where different treatments and
procedures took place, and really got a good vibe.

The whole day was "good", positive, and provided us with a short-term,
intermediate-plan, and long-term plan for care. And getting well!

In a layperson's words, here's the bottom line:

The only treatments for CML are Gleevec and two other closely-related
drugs. I am clearly Gleevec-intolerant. I will try one or both of the
other drugs but it is 50/50 at best that I will tolerate either.

Beyond the drugs, the only other choices are no treatment or a bone
marrow transplant. The transplant is very scary stuff. Like really,
really scary. But, it is also the only hope for a cure, meaning long-
term remission.

So we decided it was time to change doctors in Spokane and I saw her
yesterday. The good news is that she seems committed to helping me.
The bad news is that 1. I have failure to thrive and am not well
enough to tolerate any treatment at this time and 2. She is even less
optimistic that the drugs and I will get along.

So, I now have begun more tests to make sure that "nothing has been
missed" and will develop a plan to get well enough to try the drugs so
I can see if I can tolerate them and when I will need the transplant.
But it does sound like a transplant is in the future.

Again, I have suffered the "writing makes it real" syndrome so I
apologize for the delay. Frankly, we are beyond overwhelmed and
struggling with all that must be done.

These are the basics. I'll write more soon.

Peace and much love,


Sunday, September 14, 2008

Fred Hutchinson, Here I Come!

Tomorrow afternoon my husband, Craig, and I will leave for Seattle. It is about a five hour drive, fairly due west, from Spokane. Fred Hutchinson, the bone marrow transplant part of the Seattle Cancer Care Alliance (SCCA) is pretty much at the point where I-90 and I-5 meet. Wonderful touristy area, if one is a tourist. Fred Hutch has a special contracted rate with a couple local hotels. I will not shock you with what the "special" rate is..... But parking is free and there is a shuttle that will take us to Fred Hutch and return us to the hotel. Oh, I almost forgot. There's a complimentary full breakfast at the hotel!

Our children, John Paul (5) and Brennan (3) will be staying at our neighbors'/friends' home. They are very excited for two nights of sleep-over.

Monday should be a full day, starting at 8:45a going on to about 6:00p. We meet with the CML specialist, Dr. Raddich, for three hours. Then a quick lunch break. THEN the big meeting with the financial counselor. Additional meetings with a social worker, volunteer services, and an oncology nurse follow. Finally, there are optional tours of both inpatient and outpatient facilities.

If we are not total and complete zombies by the end of the day, we are going to join Craig's sister, Angie, and her husband Jim (who live in Renton) for a bite to eat.

Craig will definitely return to Spokane on Tuesday. If it is necessary for me to stay in Seattle longer for tests, I will fly back when I am done.

Not much else to say right now except for I am very nervous, can't sleep, so I decided to work on setting this blog up.