Monday, February 1, 2016

Hello from NYC

Hello friends. I'm sorry it's been so long between updates -- things have been rather busy with my day job of late, as well as my hobby. That and general good health make for limited updates here.

In part, I didn't update anything on my decision about whether to continue to be seen by the folks at UAMS in Little Rock versus following my beloved Dr. BB to Mount Sinai here in Manhattan because I hadn't yet made a decision. And in a sense, although I'm currently sitting in a waiting room on the upper east side of NYC, I still haven't.

My primary concern with following Dr. Barlogie is that he is no longer the big fish. He is on the staff of his former colleague Dr. SJ, and things will roll along here in large part consistent with the existing culture. This means it's been very hard to schedule (though a change in my insurance carrier didn't help either). I'm trying to do something very simple and in sequence: access my port for blood and other dirty work, get a PET scan (using that port for the tracer), get by knocked out one time, have a bone marrow biopsy and a targeted fine needle aspiration guided by the PET to sample any unresolved lesions in the bone, and talk with the doctor.

The over-under on things that go wrong with that plan is four. I suspect I will leave here without the fine needle aspiration done, for one thing, and that I'll be stuck full of holes anew. Having established those odds...I'm still leaning towards taking the over.

For this reason -- and because after all Dr. BB is in the third act of his career, so to speak -- I'm reticent to pull up all stakes at UAMS. I want to keep a foot in both ponds, at least until I see how things tick up here in NYC. So I'm leaning towards getting my testing done here and then doing a phone consult with the folks at UAMS, versus having two sets of tests done.

We shall see if that is permitted.

Meanwhile, I'm waiting to be called but I already miss certain "homey" touches from Arkansas. I was counting on a tissue and a cup of coffee and they have neither, and the familiar faces from the infusion center at Little Rock are of course missing.

On the other hand, I have more food choices this week than was the case in Little Rock. And I have a fair amount of work I can get done in this great city. So onward we go, with a foot in both ponds for the time being.

Real-time update: a big hug from the irrepressible BJ has just made everything seem great here. :)

4 comments:

  1. Nick, I'm very interested in your experience in NYC. I go to LR in three weeks and look forward to visiting all (minus BB and BJ), You were pretty much right on about my response to TT4. Don't stay away for so long.
    Craig

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  2. Nick, I am also very interested in how it goes there. I don't know for sure what I am going to do either.

    I don't know if you have been to Little Rock since BB left, but we went in October and felt that our experience at UAMS had also changed. We waited in a not very crowded waiting area to see the new doc. I will say that we had coffee and tissues though.

    I think that my new doc is probably very competent, but I did not leave the visit with the same uplifted feeling with which we left after talking with BB. The visit seemed more clinical and less personal.

    I have some of the same concerns that you stated about moving to NYC to see BB. Another concern is that I read that Mt Sinai would not offer conscious sedation for my BMB. I had some that were very manageable, and then had a HORRIBLE one. I have requested and received conscious sedation ever since. Not sure how to find out about this, if you have any idea I would appreciate the input.

    Also interested in how you went about setting up your appt. in NYC.

    Best of luck - Ed

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  3. I wish I knew you were in NYC. I had an appt with Dr. SJ yesterday. We could have met for a cup of coffee. I know were they keep it at Mt. Sinai

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  4. FWIW: I've had my case co-managed for the past couple of years between Dr. V at Cedars and a local, but very knowledgeable hemotologic oncologist nearby in Torrance. The purpose is to save me from making regular trips to Beverly Hills from the beach. Point is, this co-management thing works out just fine. They cooperate nicely. Dr. V has final say, given that Myeloma is his expertise. Would some soft of co-management work out for you as well? Or would politics interfere?

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