To Life, L'Haim
I am swinging back into my more ponderous mood as I face my upcoming CT scan. It has been almost 6 months since the last one showed small but definite growth of my mesenteric nodes.
The daily joys of life linger less time in the front of my brain. Instead the small pocket of dread from the back of my head creeps forward to leave a thin but unmistakeable scent of fear in my nostrils.
The unrevealed will soon be exposed. Will it be a clarion call to action, or a long OHMMM to pause and savor the success? Will I scream with joy or will I grit my teeth, prepare my weapons, and climb back in the ring for another round with the dragon?
Or will there be no clarity. Just more questions.
It is all about the journey after all.
I remain confident with not a palpable node to be found and all normal labs. Surely my CT will confirm what my loudest inner voice tells me.
I am healthy.
I am well.
I am winning the war.
To life
L'Haim.
posted by Brian Koffman at
10:25 PM
4 Comments:
L'Haim to you Dr. Brian and as always you remain in my prayers. Check-up time is always unsettling so I pray for peace of mind for you and wisdom for you and your doctors. Karen Owens
I am 2 years post stem cell transplant and just had my 2 year check up and all went well and still in a Remission. I know how stressful the weeks before going are....the worry and anxiety. Hoping all goes well for you and your remission continues.Sending good wishes and positive thoughts your way!!!! Just started reading your blog recently and it is great thanks for sharing your story. It is amazinig how many others I find going through the same process, fears and so many ups and downs through the transplant process. For me it was all worth it to be here 2 years later with my 3 children!!!!
Life is Good!!!
Donna from Boston MA
Your last five lines sum it all up...the times leading up to check ups always seems to bring up thoughts that might have been spent on other activities and events. As soon as your good reports come from the visits, hopefully things will settle again. Be well and remember many are keeping you in their thoughts.
Brian, My wife and I have been looking at your blog periodically and it seems that you are preparing for a 2nd transplant or some kind of treatment. My situation is somewhat similar to yours. I had a non-myeloablative Allogeneic HCT about two years ago and never developed full chimerism. My CLL returned with some aggressiveness. I began OFAR chemotherapy and seem to have gotten good results. After 3 cycles, my clonal DNA VH IgG / uG decreased by 24 times from 535K to 22K plus my donor chimerism CD3 increased from 44% to 92%. (I just finished 4 cycles but we don't have the test results yet). It seems that the OFAR attacked me more than my donor sister. I don't know if you can expect similar results, but it may be worth considering. Like you I went to see Dr. Kipps, but I did not find him in favor of OFAR in my case. He wanted me to try one a gene therapy clinical trials. I might suggest that you consider seeing my doctor Dr. David Miklos at Stanford for more information.
I do want you to know that OFAR is not easy to take and it will make you feel really sick, but that might be a small price to pay if you save your graft.
Best wishes,
Gary
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