Blood draw today, appropriately Thanksgiving Day with results to be thankful for. Slowly the numbers are creeping up. Whites 0.69 & Neutrophils 0.40. The highest they've been. And this is a good thing! It also seems I've been holding both the platelet transfusions and the red blood transfusions maybe a day or two longer than I previously have. In fact, a platelet transfusion and a red blood transfusion we planned for tomorrow could probably wait until Sunday. However for safety reasons we will schedule both for Saturday now. Wow. Although in extremely minute increments, I now feel that there is indeed a slow progression forward. For this...and so very much more...I am both grateful and thankful. I reserve a very special soft fuzzy place in my heart for Bruce my donor....and for ALL my priceless caregivers that nurture and support me. XO
I pray that all of you have equally precious things that you too are thankful for on this day = )
To Life.
Cheers.
Thursday, November 27, 2014
Friday, November 14, 2014
Today is my 7th Birthday
Go Figure.
We transplant patients always recognize two birthday's each year. One biological, the other donor gifted. We acknowledge what our donors bestow upon us during the transplants that literally gave us our lives back. Without them not only would we not be here but likewise we wouldn't be the walking medical miracles that we are. On this day I have always honored my donor Bruce tremendously. Simply because he made a difference. A Huge difference... in my life.
Amongst all the unknown, as I move thru treatment this second time around, this date, such a monumental milestone, I had completely forgotten about until I was on the 5th floor late yesterday afternoon. As the staff was confirming all my identifying info, including the date, (for yet another added-on platelet transfusion) it occurred to me that November 14th - Today - is my second post-original transplant "re-Birth" date. I am now officially 7 years old. Seven beautiful, enlightened, active, sweet air breathing, years old. Thank you Bruce.
In commemorating this day, for the past six years I have always sent Bruce a Thank you / Happy Birthday note. This time, with everything that is going on, it simply slipped my mind. I feel awful. Both he & his wife Beth have stood by me, listened to me, supported me throughout this horrible relapse. I can't believe I forgot such a monumental day in my life. I can't believe I'm fighting against this thing again. And still, Bruce donated....yet again, his T-cells. Go Figure.....
To Bruce.
To Life.
Cheers !
We transplant patients always recognize two birthday's each year. One biological, the other donor gifted. We acknowledge what our donors bestow upon us during the transplants that literally gave us our lives back. Without them not only would we not be here but likewise we wouldn't be the walking medical miracles that we are. On this day I have always honored my donor Bruce tremendously. Simply because he made a difference. A Huge difference... in my life.
Amongst all the unknown, as I move thru treatment this second time around, this date, such a monumental milestone, I had completely forgotten about until I was on the 5th floor late yesterday afternoon. As the staff was confirming all my identifying info, including the date, (for yet another added-on platelet transfusion) it occurred to me that November 14th - Today - is my second post-original transplant "re-Birth" date. I am now officially 7 years old. Seven beautiful, enlightened, active, sweet air breathing, years old. Thank you Bruce.
In commemorating this day, for the past six years I have always sent Bruce a Thank you / Happy Birthday note. This time, with everything that is going on, it simply slipped my mind. I feel awful. Both he & his wife Beth have stood by me, listened to me, supported me throughout this horrible relapse. I can't believe I forgot such a monumental day in my life. I can't believe I'm fighting against this thing again. And still, Bruce donated....yet again, his T-cells. Go Figure.....
To Bruce.
To Life.
Cheers !
Thursday, November 6, 2014
Rollarcoaster
Long time. And a rollercoaster of game plans, sudden switches, constantly changing theories. A brutal reminder I am NOT in control of my own body nor of what the physicians have in mind to rescue/recover my marrow. We are breaking new ground and this whole thing is simply a messy moving target.
Quickly and currently; I was admitted back into UW Medical Center for a painful, swollen, and very warm-to-the-touch left knee yesterday. For fear of what could potentially be a dangerous infection. This, along with significant joint-pain in every body joint which has simply escalated as the weeks pass. Enough pain to wake me during the night when simply rolling over in bed. Due specifically to my knee, my SCCA physicians were finally concerned enough to admit me into the hospital to have it drained & the fluid cultured. Thank god there was no infection found. But during the reviewing of timing vs. symptoms it now seems to directly correlate to 2 separate heavy-hitting (and expensive) medications that I had been prescribed. Needless to say both have now been either stopped or adjusted, and I just walked back in my door at home, no longer chained to an IV pole in a hospital. YAY !!!
Now to back-track a bit: at last post I was given the rather distressing news that they were indeed moving me towards transplant, were/had narrowed down to a single new donor, & that I was now lined-up for a MINI-Transplant, not the one we had previously discussed. A daunting and surprising move that at that moment kinda made sense but scared the hell out of me. Having no bone marrow is a rather daring, vulnerable, and dangerous way to live. And my marrow certainly wasn't returning with any speed nor significance.
However within 38 hours all gears switched....yet again ! Now onto game plan "G" (??). Last Wednesday they decided to cancel the transplant ("not strong enough" for one...), try a synthetic growth hormone - neupogen injections, which in theory encourages neutrophil & white blood cell production. To be followed-up with a second DLI injection 6 weeks from the first (Oct 17th).
I had 2 neupogen injection, one of which did indeed give an uber-nano-bump to the WBC & neutrophils. However the 2nd injection didn't seem to effect anything. I'm not thrilled with synthetics, nor growth hormone, so I am glad they decided to stop this treatment for the time being. Moving forward, and barring any significant GvHD symptoms, we will simply rely on the wait & see method, the second DLI late November/early December, and keep fingers crossed the marrow will return...... And' I don't get sick, be exposed to illness, or have any other complications.
We are currently using the Caregiving Calendar, however only on Mon/Wed/Fri. And probably only 1 weekend-day each weekend. Those on Tues & Thurs will be "on call" for any accompaniment to blood transfusions as needed. I will contact my Weekend Warriors directly.
Thank you ever so much for rockin and rollin' with me thru all this confounding, utterly confusing BS. Honestly I haven't written anything sooner simply because I can't keep up with the changes. Nor do I know what in the hell to say anymore. I am not in control of my body.
( tho I wish to bloody hell I was. 'nuff said ! )
K -
P.S. made an appt with Ortho for my knee. What do cancer folks know about old ski injuries pumped-up and aggravated by prophylactic power-antibiotics, right....
Quickly and currently; I was admitted back into UW Medical Center for a painful, swollen, and very warm-to-the-touch left knee yesterday. For fear of what could potentially be a dangerous infection. This, along with significant joint-pain in every body joint which has simply escalated as the weeks pass. Enough pain to wake me during the night when simply rolling over in bed. Due specifically to my knee, my SCCA physicians were finally concerned enough to admit me into the hospital to have it drained & the fluid cultured. Thank god there was no infection found. But during the reviewing of timing vs. symptoms it now seems to directly correlate to 2 separate heavy-hitting (and expensive) medications that I had been prescribed. Needless to say both have now been either stopped or adjusted, and I just walked back in my door at home, no longer chained to an IV pole in a hospital. YAY !!!
Now to back-track a bit: at last post I was given the rather distressing news that they were indeed moving me towards transplant, were/had narrowed down to a single new donor, & that I was now lined-up for a MINI-Transplant, not the one we had previously discussed. A daunting and surprising move that at that moment kinda made sense but scared the hell out of me. Having no bone marrow is a rather daring, vulnerable, and dangerous way to live. And my marrow certainly wasn't returning with any speed nor significance.
However within 38 hours all gears switched....yet again ! Now onto game plan "G" (??). Last Wednesday they decided to cancel the transplant ("not strong enough" for one...), try a synthetic growth hormone - neupogen injections, which in theory encourages neutrophil & white blood cell production. To be followed-up with a second DLI injection 6 weeks from the first (Oct 17th).
I had 2 neupogen injection, one of which did indeed give an uber-nano-bump to the WBC & neutrophils. However the 2nd injection didn't seem to effect anything. I'm not thrilled with synthetics, nor growth hormone, so I am glad they decided to stop this treatment for the time being. Moving forward, and barring any significant GvHD symptoms, we will simply rely on the wait & see method, the second DLI late November/early December, and keep fingers crossed the marrow will return...... And' I don't get sick, be exposed to illness, or have any other complications.
We are currently using the Caregiving Calendar, however only on Mon/Wed/Fri. And probably only 1 weekend-day each weekend. Those on Tues & Thurs will be "on call" for any accompaniment to blood transfusions as needed. I will contact my Weekend Warriors directly.
Thank you ever so much for rockin and rollin' with me thru all this confounding, utterly confusing BS. Honestly I haven't written anything sooner simply because I can't keep up with the changes. Nor do I know what in the hell to say anymore. I am not in control of my body.
( tho I wish to bloody hell I was. 'nuff said ! )
K -
P.S. made an appt with Ortho for my knee. What do cancer folks know about old ski injuries pumped-up and aggravated by prophylactic power-antibiotics, right....
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