Cernunnos Morrigu (cmorrigu) wrote,
Cernunnos Morrigu
cmorrigu

Letter from Chichi

Well it's been an interesting January. I received a call from the Oregon
Clinic
Trial Representative telling me that I would not be re-instated into the
Gleevec trial. Although they changed the protocol regarding hospitalization,
they would not grandfather anyone.

So we talked with my hem/onc about options. He was willing to write a
prescription for Gleevec and we could give the drug another 30 days or so to
see if it would do any good. The second option was to try an unproven ( for my
disease) drug called trisenox. It's an arsenic based drug that they give to
leukemia patients. It's administered through a daily IV over a two hour period.

The third option was to have my stem cells transplanted. Two years ago I
had a stem cell harvest at the Mayo clinic in Rochester, MN. I always felt that
this was an "insurance policy" in case we ran out of options.

Those were the three options left. I called the Mayo Clinic doctor and
discussed my situation with him. He basically told me it's time to face the
music. In his option the only option is stem cell transplantation. His
reasoning was that several Gleevec trials have shown it does not work for my
disease. There have been no trial results on trisonex and in his opinion it's
risky in an uncontrolled experiment.

That was tough to take. It took me awhile to come to grips with the fact
that my options were gone and it was time to "cash in" on the insurance policy.

The Lord does have a plan and as we prayed and cried over the fact that
this time had come, HE began to set in motion numerous things to lead us to a
comfortable decision.

The biggest decision was to get my mindset that this in truth is the only
option. After that the next question was where to have the procedure done. I
always had it in my mind that it would be done at the Mayo Clinic. One day I
asked my primary doctor for his opinion and he said there are only four centers
in the US where I would recommend this be done. Mayo was not one of them!

So we angst over that comment and spent a lot of time researching the four
facilities. I spoke with a lot of people via email about their experiences at
these facilities. I called two of them and talked with the medical staff. We
came to the conclusion that we will have it done at MD Anderson Cancer Center
in Houston, Texas. My hemc/onc supports that decision and spoke highly of them.
He would have suggested the Hutchinson Center in Seattle but he said MDA was
also on par.We ruled out "The Hutch" as it's called because of the distance and
added expense of travel.

Then the Lord eased my anxiety about the procedure itself by directing us to
two people ( via the internet) who had gone through the procedure. After
reading one woman's daily account and writing to another person my mind was
further eased.

You see the procedure involves a chemo regime that kills the bone marrow.
Then they put your stem cells back in through the blood. The stem cells find
their way to the bone marrow and begin reproducing. During that time I will not
have an immune system and will be in isolation. The length of time will depend
upon how quickly my body responds to the stem cells.

So that's where we are. We are waiting for an appointment with the MDA
staff for a consultation visit. When we go back for the transplant we will be
in Houston anywhere from 6 weeks to four months. We will have to get an
apartment, hopefully close to the facility. I will be immune suppressive for
almost 6 months and will have to be careful about being around people, pets and
plants.

As always you have been a tremendous support for us. Your emails, cards, and
calls and especially the prayers are very appreciated. We will really need your
support when we go for the transplant.
Thanks for you support.

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So that's what is going on out in FL. I'm supposed to fly down to see them sometime during this procedure - although it sounds like I won't be doing much or having much contact with them.

I take issue with the suddenly devotional tone of this message, but I can see where it might lend some small amount of comfort to do so at a time like this for them.
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