February 5th, 2003

ddr

sleep to wake ratio

I've been struggling to stay awake all day. Wanted to give in this morning and just sleep in, I was in deep sleep mode when the alarm went off. I know I kept yawning all through the day.

Lunch with boss at Hayward's, which was okay. The food wasn't up to usual standards, but they paid.

Had a bitchfest in the afternoon with boss and Hawkwind. Everybody was stating how many hours they'd been working, etc.

Came home at 4 or so. Checked what little I could online, since things were being flaky. Then slept - or tried to with all the phone calls. Woke up and vegged to History Channel and made fajitas. Called Oz back and chatted for a bit.

Faded away again, knowing better. Slept on the couch for a bit, then tried to switch to bed.. Of course that didn't work, so I'm up now.

Not going into work in the am, have an Idoc appt that I'm using as the reason to not show up until afternoon. Will prolly hit the store after doc to refill food supplies and such. Then a bit of work, perhaps. I have some reports to finish. I also need to ask Hawkwind about reciprocal time and billing it, and maybe give some feedback to RunningBear.

It's interesting how conversation with some people is forced, while it flows naturally with others.
  • Current Mood
    groggy groggy
kmix

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.

------------------------------------------------------------

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.
ddr

ugh

Another wave of lethargy hits. I prolly have time for a short nap before heading in to work finally.

I managed to sleep pretty well after tossing and turning. I suppose once I got there, sleep was good. It was getting there that was the hard part.

I was watching Nova on PBS - it was the first half of the battle of the X planes, the second half of which I had seen the other day. Very interesting stuff. Talk about high pressure projects... But it suddenly just.. stopped. I don't know if the credits ran or not, I was browsing other channels to find an alternate if it got boring... when I switched back, the local channel logo was on.

Reset the alarm after it went off to give more sleep time... Actually got back pretty deep asleep before it went off again. Managed to get up, showered, and out pretty much on the timeline I wanted. Didn't eat, tho.

The Idoc's office opened about 3 mintues after I got there... I swear, I can't help but be early to that place for some reason. Didn't have to wait too long, being the first one of the day. Everything's kosher. 20/15 pretty easily this time. Next appt in 3 more months.

Headed over to the store, grabbed some foodstuff. Came home, ate breakfast, and got online to see what's up. Chatting with Hunny. Rodimus called about lunch.

I think I'll nap for a few, then head out to work by 1. I have a few things to accomplish there, then I can come home and try not to sleep until later in the evening.

I may go to DDR on Thurs, not sure yet. I'd like to get out to check 8th mix out, but will prolly settle for 7th if I go. Motivation is hard to come by, I'm still unsettled from the past few weeks... it's hard to justify going out if I don't have to.

My last DVD set should arrive sometime today. Need to hold back on purchases for awhile, let the cards clear. Besides, I've got hours and hours of stuff to watch still.
  • Current Mood
    lethargic lethargic