Love - Laugh - Live

"Those who bring sunshine to the lives of others, cannot keep it from themselves."
- Sir James M. Barrie
(1860-1937)

Journal

Monday, March 2, 2009 4:10 PM CST

Folks:

Here's a recap of the past few weeks and what's up and coming ...


Sun - 2/15/09 - Travel to Rochester MN via Detroit. Weather in all 3-places cooperated!

Mon - 2/16/09 - Blood tests; Dr. visit - the "plan" over the phone the previous week was chemo Tue & Wed, T-cells from the donor Thu - fly home Friday; after looking at my blood numbers - Dr. cancel's chemo - says he's really pleased with the numbers. Stops tachrolimus (anti-rejection drug).

Wed - 2/18/09 - late into Thu morning @ 2:00 AM, flu like symptoms, minus the fever - coming out both ends!

Thu - 2/19/09 - visit Station 94 - Outpatient Desk in the AM; need to rule our Graft vs. Host (of the gut/intestines which can mimic the flu -

Fri - 2/20/09 - flex-sigmoidscopy of the colon; results not known until Monday 2/23/09

Sat - 2/21/09 - 102 fever at S94; order chest x-rays and blood cultures; start 2x/day vancomyecin antibiotic and cefapim (2.5 hrs / treatment = 5 hrs / day).

Sun - 2/22/09 - blood draws indicate continued down-grading of all blood values - no real explanation except IF it is GvH, then the process uses a lot of cells; possible explaination could also be conversion of CLL into something more agressive?!?! Oh, great ... we're pretty concerned, although I don't feel as bad as the numbers indicate.

Mon - 2/23/09 - Dr. says no GvH per the flex sigm from Friday (we were hoping for some GvH, but T-cells are too low for GvH) - set up tests as follows: CT Monday to compare to scans in January

Tue - 2/24/09 - upper & lower endoscopies w/ several biopsies; Dr's verbal notes indicate "something not seen in colon before" - recommends Pet Scan to determine if "mass" lights up anwhere else; called back for 2-pints of blood - I cannot believe it as I feel really good - especially w/ my colon cleansed (the commercials are true)!!

Wed - 2/25/09 - Full body Pet Scan due to "unknown mass" in colon; Dr. hopes that "mass" is CLL, else will need to treat colon, then do T-cells in several months after treating what ever is in the colon; Feel kind of sick after eating; diareah returns - GvH?!?! No answer yet ... PICC line (catheter) placed in my right arm from 7-10 PM; antibiotics follow; RTN to GOL House @ midnight.

Thu - 2/26/09 - double bone marrow biopsy (right and left hips); blood values still on the down side; running @ 100 degree temp; still out of the hospital except for 2x visit for antibiotics; PICC site looks very red and "angry" - Dr. orders blood cultures and puts me back on Vanco/Cefapim x2 / day! Still walking back and forth to the hospital from the GOL House - really have pretty good energy! Recieved 2-pints of blood over 5-hrs; 5-10 PM

Fri - 2/27/09 - Meeting w/ Dr. Hogan @ 3:30 PM - Mixed bag of results ... possible GvH of the gut from upper endospoy, but Dr. thinks not (due to low T-cells). "Mass" in colon was not really a mass but an area of concern and was biopsied - not enough cells were collected to determine conversion from CLL; CT scan indicates enlarged lymph nodes in the abdomen area but conclusive evidence will be in the results of the bone marow test results - which will not be until Monday at the earliest ... we're glad it wasn't "colon cancer" but still concerened about conversion and more chemo ....

Mon - 3/2/09 - Can't believe it is March! Saw the Dr. at the hospital but had no information as of Noon time ...

More to follow tomorrow .... B

Hospital Information:

Patient Room: Room #35

Gift of Life Transplant House
705 Second Street, SW
Rochester, MN 55902
(507) 285-6392

Links:

E-mail Author: barrydepot@msn.com

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