Monday, September 22, 2008

"Please Please, Mr. Postman Wait and see Is there a letter in your bag for me" Garrett, Holland, Gorman, Dobbins, Bateman Performed by the Beatles

Deliver the letter.
Dee sooner, Dee better

I am loving the letters and post of introductions and reconnections. It helps so much to know who is reading what I am posting. Thank you. Thank you.

Now for your lurkers. That's OK.  You don't need to break your vows of silence. I understand your reticence. I too lurk around on many excellent CLL and BMT and ITP lists and blogs, zooming in to deposit a word or two only occasionally when I spot a glaring need and I have the energy to respond.

Still it would be sweet to hear from you and know a bit of why you spend some of your precious time with me.

Add a comment here or email me at bkoffmanMD@gmail.com

My clinic visit today showed stable lab. Dr. Forman said that we two will be joined at the hip for quite awhile due to my chimerism issue. That's the fact that I am still only 28-32% donor in my blood and and between 56-66% in the critical T cells. Most are close to 100% donor in both by now. The fancy tests measuring those such things are being repeated in a week with results in two. The trend is important and to have a trend you need may data points over time. This is my new challenge, but hey: Go from strength to strength as the Psalmist said.

I am presently researching DLI (donor leucocyte infusions) and will report back later this week with my findings.  I am preparing for a battle I am hoping never to fight. For those lost in my medicalese, think of a DLI as a mini-mini transplant used to boost the percent of the blood that is donor (up the chimerism) and also wipe out any residual or relapsed cancer.

If you have had a DLI or have info to share, please contact me.

2 Comments:

Blogger Peter said...

Another lurker stepping out of the shadows -

I'm Peter Foster - a writer for the National Marrow Donor Program. I track a wide variety of patient and caregiver communities and personal blogs as part of my research to develop educational materials. It helps immensely to gain insight into what the transplant experience is like "on the ground." Learning about people's hopes, fears, frustrations, obstacles and creative solutions help us provide better materials and support services.

It's been eye-opening to learn how people's real-world experiences of recovery and access to resources can deviate from the best-case scenarios that a lot of hospitals and patient organizations put forward as what to expect. As an editor, the trick is in finding a way to present information that empowers survivors and focuses on what they can do, without overwhelming or discouraging others who might not experince the same complications, or are at a different stage in their recovery.

Thank you for the opportunity to peek over your shoulder and follow your experience.

Peter Foster

September 23, 2008 at 8:04 AM  
Blogger jortega said...

Hi Brian,
It's me, Janet. Yeah, I confess, I've been lurking too. Some weeks back I sent a comment or two...but oh my gawd, this computer blog thing... the signing up thing, the do I write a message first or put the password first, then forgetting the password. One time I had to re-type my whole message to you...I still don't know where it went. And just to let you know
there are several hanging on your every word. I think it is a good thing that you shared your email address. Anyway, I'm so happy for you and how well you are doing. We have been seeing a number of your patients and they are always asking about you. You are so missed. All right, hope to see you sooner than later. By the way, did you hear the one about...nah, I'll tell you when I see you. Here's a big hug and a peck on the cheek.
Janet

September 23, 2008 at 9:30 PM  

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