March 31: Bethesda

On Tuesday, March 30, Hal and I made the long-anticipated journey to Bethesda, Maryland and today we had our consultation there at the National Cancer Institute Oncology Unit.

In ancient times, in Jerusalem, the Pools of Bethesda were a place of sacred healing according to the Gospel of John in the New Testament. I experienced a deep emotional/spiritual insight there, where I walked alone in silence a couple of hours a year ago.

Healing Pools of Bethesda in Old Jerusalem

Maybe the National Institutes of Health are modern-day Healing Pools of Bethesda.

Patient Entrance to NIH in Bethesda

We spent five hours at the NCI in various activities such as physical exam, blood tests, the expected and some unexpected paperwork, in-depth interview by one doctor, and then a “team” of medical people giving feedback to Hal and me after they had discussed the case among themselves.

The message about stem cell transplant was straightforward: don’t do it. No hemming and hawing on that.

The surprise was the recommendation that my doctors switch to a different chemo protocol for the next two cycles. Their point was that for my particular type of MCL – the “blastoid variant” there is a different protocol that would be as effective as the HYPERCVAD that I am now finishing second cycle, and would be less damaging to my body.

My next step is on Monday at my next meeting with my oncologist, to get her hooked up with the docs at NIH to discuss directly their recommendations. Timing is important.

We returned home tired but so glad we had made the effort to do this.  It could mean a lot to our future.

Here I am in the lobby of the Mark O. Hatfield Clinical Research Center of the NIH.  Photo by Hal.

Bev in lobby of Mark O Hatfield Clinical Research Center

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