Shutting Down...For Now

This site is about to be shut down.  There will be no more new blogs.  My life may be headed back in the right direction.  Yesterday I received the results from my biopsy and it seems I am AML (leukemia) free.  The one caveat is that the doctor did not pull out as much marrow as was necessary (my body seems to be very stingy with the marrow -- it has happened almost every time I've had a biopsy. My Kaiser doctor has had to needle me three different times at one sitting!) so in three months they will retest. Basically I'll have a biopsy done with a bigger needle. Ouch!

The good and the bad: I do not need to wear a mask (except at the hospital), can drive with the window down, drink water from a faucet (and bottled water), eat raw fruits and veggies (except at restaurants), and take a bike ride! I still have to take massive meds, must not work/play in dirt/grass (can golf but must be very careful), need to watch myself around children (easiest way to catch something) and will be very fatigued for a while.

Well, I'm seven days away from a 100 days -- really, my new immune system is still in its infantile stage.  All is well. I'll shut this down and bring it back only if I have to reenter the hospital.  Thanks for all -- the feedback has been great. In the worst of days when I was in Stanford Hospital the cards/replies meant a lot -- you really don't realize how important people and words are to your well being!  Ok, this ship is about to set sail again -- hopefully we see you all soon!

ps -- no pictures again! The computer or the site will not allow me to upload....I had some good ones too.

Cleaning Up!

I'm finally leaving Palo Alto! Per my agreement with my doctors, I am free to commute from Galt starting next week!   Tomorrow is day 80 post transplant. Possibly the hardest 80 days of my life (the first 80 days in Peace Corps is a very close second)! It may be my last day at the transfusion center - On Tuesday I'm scheduled for a biopsy and then on Friday I have my port taken out (the port is a plastic tube that runs from the right side of my chest all the way to the heart -- when I needed blood, platelets, meds, etc. they would give them to me via the port rather than through an IV in the arm - The best thing about this is no more taping and covering up before a shower -- its all natural for now on!). Starting the week after this I will be seen by my regular doctor (Dr. Arai) at the clinic. It will probably mean a 1 hour appointment rather than the 3 hours I've been averaging at the ITA (transfusion center).

Ok, got to go -- need to clean up this apartment. For the last month or so I have been living alone and really neglected the cleaning -- time to pay the piper...ok - take care and we'll see you soon!

Just FYI Stuff.....

There was a great article in the Sacramento Bee this weekend of a young girl with Acute Myeloid Leukemia (AML).  She has a rather dramatic story but really when you're that young and have to go through this its pretty dramatic (for them and their families). Where/when you can please give blood, register in the bone marrow registry (my brother was a match for me but not everyone is so lucky and the procedure is usually done by taking your blood nowadays), give money to cancer research, or just be aware of your own health and those you love.  Click here to see the story -- it's a good read.

For more information on donating, click here.

Alright, folks -- thanks for everything -- you are all very supportive and appreciated.

A Better Week

Whew! Just got back from a nice walk. Usually I go around 6 in the morning but today slept in and didn't leave till about 10.  Walked 45 minutes through winding, shade covered streets - very pleasant. The one good thing about being stuck out here is the weather is so nice!  I think the high today is supposed to be in the mid 70s.

Well, this is a far cry from last week. Had a very difficult week. Was tired, weak, tremors in the hand, a semi headache....I was starting to think the leukemia was coming back. On Friday the nurses checked my blood and it was discovered that my Prograf level was almost twice what they want it to be. Apparently my body reacts very efficiently to this drug.  They lowered the dose for the 3rd time so hopefully things are more steady from here on out.  All else seems to be going well. I am pushing the doctors to release me early. I wanted to commute at 70 days but we compromised and if all goes well I can begin to commute at 80 days. This is a lot better than 90-100 days.  My next target is getting the mask off. I think I should be able to do it already (except in hospitals/near children) but won't chance it without the doctor's approval. Today is 65 days post transplant so next week I'll start seeing what the doc thinks. I really have been lucky through all this!  Oh, and my eyelashes and eyebrows are growing back!

ps - no pictures today - the computer/server seems to be acting up.

Progress! Home for a Weekend!

Finally some movement! Had a great visit today at Stanford. My numbers were good and my body is slowly feeling stronger. No rashes, nausea, diarrhea, etc...anyway, the good doctor finally gave me approval to go home on the weekends! My life was sort of hitting the doldrums...it was Bill Murray and 'Groundhog Day' all over again.  On Day +60 (60 days since transplant) I'm going to start pestering them to allow me to commute from Sacramento.  As it is now I walk to the clinic on my own, drive everywhere independently, cook, clean, manage meds, and even flush my port.  I am a damn Rock!....sort of. The one thing I fear, even more than the chemo/radiation/transplant, is this graft versus host disease (GVHD).  Any type of infection (internal/external causes) can lead to the GVHD.  If I get that then I'm in trouble...and supposedly this will be a danger for at least the next five years.  Anyway, this is supposed to be a celebration! Everything is still positive. My numbers are good, I'm eating well, and my body is holding up. Sometime next week I'll see if commuting is a possibility -  that would be a nice two month gift.

Relaxing at the clinic. I get my blood drawn and then have to wait an hour for the results to come in. Today I needed magnesium which takes about an hour to drip. In the meantime I catch a little espn and listen in on peoples conversations.

I'm home! Still having to wear the mask but free to be away from Stanford.  My prediction: By next week (or by August) I will be a commuter to Palo Alto.