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Road to a Stem Cell Transplant – Part 2

Posted by on November 2, 2011


Another Commute on the MNR527

 

 

Road to a Stem Cell Transplant – Part 2

My trip to the city each day is usually an interesting event. There are about 10 of us who ride the same train together, talking mainly sports, the stock market or politics. While there are ten regulars there are a group of others who ride with the group less frequently. This particular morning, a nurse from a major cancer center happened to be in our group. I had never talked to her at any length in the past but grabbed the seat next to her this particular morning.

By the time we arrived at the city, we had exchanged email addresses and phone numbers. She asked me to email her the basic details, as we discussed. By that evening I received one of the most eloquently worded letters I had ever read, from this same nurse. Without saying anything really bad about the hospital I had just exited, she more then convinced me that I needed to switch hospitals. That T_Cell Lymphoma was very rare and nothing to play around with. She had already got me hooked up with the top doc, if I wanted to come in, for at least a 2nd opinion.

The following day was my followup with the local hematologist oncologist. It couldn’t have been orchestrated any better to convince me that my nurse friend was correct. First off, the doctor was over an hour late. The physical layout of the operation was depressing, at best. You could see to the back that there was one infusion room that looked more like a ward with the patients cancers running the whole gamut, not just lymphoma. I mentioned earlier that Non-Hodgkin T-Cell was rare but its even a bit rarer then rare… only 6000 cases per year. Spread that number among all the 3500 hematologists in the country, and… you get the point.

When I finally got in to see the doctor, she was very matter of fact…. treatment starts tomorrow… chop chop.. let’s go. She actually got pissed when I said I wanted to get a 2nd opinion. She said, “I already got a second opinion and he agrees with me”. Wow… get me the …. out of here. No, I think I’d like to get my own 2nd opinion… no offense… Please send the slides and charts to……….. I told her I’d get back to her but I think it was pretty clear in her mind that I wasn’t coming back…. unless I got a job with UPS and was delivering packages.

I showed up at the cancer center on a Tuesday afternoon. My doctor was the head of the whole lymphoma department. There was a whole building dedicated to lymphoma treatment. The waiting room reminded me of a cross between Yankee Stadium and the Port Authority bus terminal. It was actually somewhat comforting that everywhere you looked were people associated with lymphoma or other liquid tumors. Of course I was hoping that when they reread the biopsy slides I was going to be told I had an exotic infection of some sort and would be referred to an infectious disease doctor and everything would be cleared up with a few more rounds of antibiotics.

That thought lasted about 8 seconds, in between the new doctor saying “Hello, my name is” and “You have Non-Hodgkin s T_Cell Lymphoma. It’s very rare, very aggressive but not completely untreatable. Mmmmmm… ok. So… what’s the plan, doc? Well, we use high doses of chemo and if your body can take it… and it works… then you get a stem cell transplant. Wow… is that all? Oh… and as a bonus, I’ll knock that MS out too if we get that far? I read that same article, I replied trying to have my cockiness offset the doctor’s cowboy like presentation. After short pause, I said… “When do we get started?” Next Tuesday at 230….

End Part 2

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8 Responses to Road to a Stem Cell Transplant – Part 2

  1. marion margolis

    Hi Ron, You’ve got a hell of a lot of chapters ahead of you – stay strong!!! warmest regards, marion

  2. Mary

    Hi Ron, I subscribe to your newsletter and always look forward to reading the next one! I’m so sorry you are going through this. I used to be a hospital chaplain and also a pastor. I will be praying for you to have a fully recovery so you can be back doing all the things you love to do.
    Warm Regards,
    Mary Clewley

  3. Stephanie Guzman

    Hi Dad! I love the background except it is very hard to read. You might want to try a different color font! Hope you have a good first day in the hospital!
    Love ya,
    Steph

    • Steph

      It looks much better from home. There must have been something wrong with the browser at school. Have a good night!

  4. Dave Barry

    Ron,

    All the best as you begin “the bonus round”. While I was going to say the train won’t be the same without you…by chance, the 6’9″ cross dresser sat behind us tonight and Bill had a very nice conversation with “Rocky”. We snapped a pic with Matt’s phone and sent it to you. With that in mind….relax, do what you need to do and know that your spot will be kept warm by “Rocky”.

    The MNR527 will be thinking of you.
    Dave

  5. Jim G (the heart guy)

    Ron, from this heart transplant friend (“Jim, the heart guy”), my constant thoughts and best wishes (and prayers) as you start on this latest life journey. You write in a very engaging way and I’m thinking your posts will be a regular part of my daily reading, cheering you along as you progress there.

    I confess to being a little confused was I read from top to bottom and tried to figure out the order of the story (despite the helpful “part 1, 2 and 3” hints), but guessing that is just the way you thought to share them. With all writtent he same day the usual hints of date posted didn’t help sort that timeline out, but it all made sense in retrospect.

    I hope that your overall experience will be as positive as my own has been, going on 17 years now with a heart transplant down here in NJ (certainly not anywhere near a stem cell transplant, but then I am learning more about that through your entertaining musings and descriptive narrative.

    I put aside the final editing on that book you were helping me with to read your blog this morning. Now I have to get back to that. Meanwhile, if you want to read my blog, check it out at http://gleasonjim.wordpress.com and there you will also find a link to my on-line book about the heart experience (“A Gift from the Heart”) which started out just as you are doing here, with a daily report on the transpalnt events and grew into that book. Maybe you too will convert this into a book some day.

    Til your next chapter,
    hang in there Ron!

    – Jim

    • ron

      Hang in there… I am just learning how to use word press, There must be a way I can revise the post order

  6. Diane Gedymin

    Hey, Ron, are you going to write a book about this? I know a good editor and a great way to self-publish!?!
    Be careful of those steroids–we don’t want the nurses to have to testify in Congress or have you looking like Rocky Balboa!

    Seriously, I’m impressed by your humor, courage and continued positive attitude. Keep up the good work!

    x (with a mask on),

    Diane

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