Tuesday, May 21, 2019

Stump the expert

Had my consult at Johns Hopkins today. And I am no closer to a plan. The ESTJ in me is screaming.

I thought I was going to go in, and we’d go over my oncologist’s recommended course of action, which I have thoroughly researched and agree is a good one. He would bless that, and then tomorrow, I’d see my regular oncologist and we would start scheduling and moving forward.

Instead I heard things like “the book on late relapse is very thin” and “I think we’ve done a different course of treatment for each on we’ve seen.” Plus the “if you were 70, this would be much more straight forward, zap you with some radiation and be done.”  Way to be difficult, Ruby!

So, he is going to get all the hodgkins folks at Hopkins together, and discuss. I though they already did that when they accepted me, but I guess not. That will be next Tuesday. The one thing we all agreed on is that a stem cell transplant (most would know of this as a bone marrow transplant) is not on the table right now. Although it’s typically round 2, we will save round 3, and hopefully will never need it. The best thing I heard is that the risks of treating it wrong are much higher than any risk from sitting on it for another few weeks. Because I want to get started! I think I asked about the delays 3 times, and each time I heard not to worry about it. Easy for him to say!!

So it’s way too late to cancel my appointment for tomorrow, since it is the first one in the morning. I guess it will end up as a therapy session instead lol

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