1, 2, ... 9 Thoughts for 10/11/12

Thursday - 10/11/12

Get me HOME!

#1 - Coming home before noon today has been an incredible treat!  Joseph has proven once again to be a consummate schedule-juggler and quickly worked wonders to drive into Richmond to get me back to the comforts (and hounds) of home as early as possible!  As he said, Joe doesn't want me spending any more time than absolutely necessary in the hospital.  I was so HAPPY to see him  waving up at me from the street as I looked out my window and he jogged into the hospital!  31 years into our relationship and my heart still jumps  :)

#2 - While this 11th hospital stay was generally uneventful, Joe and I had quite a jolt yesterday after my (recently graduated / just finished training) RN drew blood from my port for a potassium check.  No big deal, right?  It happens multiple times a day.  Well, when I stood up after she left, my white shirt quickly transformed into a vivid red, becoming covered with spreading blood.  Yikes!  I realized that I was bleeding out of my tubing / my port.  The response time from the nursing staff was immediate and the cause was a connection that was not completely screwed in after the blood draw.  We were (literally) mopping blood off the floor and scrubbing it out of my shirts, pants, and socks.  My RN and her supervisor were apologizing for the rest of the day.  Live and learn.  I'm sure that those connections will be checked and tightened routinely in the future.  It was quite a sight.

#3 - My kidneys have come through again big time in purging the high-dose methotrexate from my body.  They have had significant help from the huge amount of fluids being pumped through my body.  As a result, I am very bloated.  Small price.  I am forever grateful  to have escaped most side effects of chemotherapy.

#4 - Back home means back to chores and productivity rather than going (a little) stir crazy in the hospital or just hunkering down.  Laundry and unpacking are already well underway.  Continued work on Megan's closet?  Maybe not today  :)  I'm more tempted to sort through photos ....

#5 - Carolyn and I are trying to firm up her upcoming travel east.  Joe is on a business trip from 11/3-10 and Carolyn will be coming to keep me company either in the hospital or here at home!

#6 - Tomorrow, Joseph and I are back to Richmond for my Neulasta shot and a meeting with my oncologist.  We will try to get an estimate about the timing for the high-dose methotrexate #2 hospitalization as well as his opinion about how much leeway I have in getting started with the allogeneic BMT.

All together in the Yucatan, 2007

#7 - Speaking of which ... yesterday I called Angela, my Bone Marrow Transplant Coordinator and got an update on the progress with my 3 potential donors.  She reported that 2 potential donors "are not available" and that while testing is proceeding on another 2 (!)  potential donors she feels that these donors are "long shots and probably will not pan out."  Hmmmm ....  In a BMT team meeting, my name came up as a potential candidate for a new randomized clinical trial involving cord blood stem cells and haploidentical transplantation.  So much critical information to wrap my head around ....  We meet with the BMT team to discuss options on Oct. 26.

#8 - Transplant confusion seems to be an undercurrent these last many weeks.  What to do?  I am feeling fabulous so a dichotomy certainly exists between my "Complete Response" to the chemo and the thought that I must act soon (read: before any relapse) on the BMT.  How should we proceed if a full donor match does not come through?  Look for a donor with an incomplete allele match (maybe 7 of 8)?  Buy time with an autologous transplant?  Go forward with this clinical trial?   So much to consider.  So many details to absorb.  Such a steep education curve.

#9 - And these discussions and research efforts are full family affairs.  Yes, moments of icy panic can ambush me in the most unexpected moments but, flooded with love from my family, I am generally calm and procedural, trying to figure out what path might produce the best outcome.  Moving forward.  Feeling grateful for my family.  I also feel incredibly, brazenly, hungrily GREEDY!  Greedy for time!  I want TIME with my family!  Oodles of it!  Years of it!  Decades of it!  What BMT decision will optimize this time?  Time to get back to the scary statistics on the internet so we can make our best guess  :)