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a bone receiving a bone marrow transplant, one side of the bone looks like a heart while the other side looks like a broken heart

Mixed Feelings About a Transplant Anniversary

It occurred to me that my birthday might be coming up, but I wasn’t sure. I wish I hadn’t misplaced my original blue spiral notebook in which I had written important dates. I tried to look it up in Patient Gateway but couldn’t find it. I could have asked my nurse practitioner at Dana-Farber to check, but I’m taking a leap and saying that I think Sept. 18th is one of my birthdays.

OK, so, maybe you know what I’m talking about or maybe you think I’m unhinged.

Mixed feelings about September 18th

I’m pretty sure that Sept. 18th is the 16th anniversary of my first bone marrow transplant. It was my autologous transplant, the one using my own stem cells. It kept me in remission for almost four years. So it’s hard to say if it worked or it didn’t work. It worked because I got that time in remission, without the complications that I now have after my three allogeneic transplants. But it didn’t work because I relapsed. So I have mixed feelings about the date.

The ABCs of SCT and BMT

Readers accustomed to seeing the procedure called a stem cell transplant might notice that I called it a bone marrow transplant. The terms are interchangeable, with “stem cell” of late having replaced “bone marrow” because it’s more in synch with the way recipients get their new cells. But I was a bone marrow transplant patient with the notice on my hospital room door to prove it: BMT.

It made me think of the name of one of the subway lines – BMT – in my hometown, Manhattan. I mostly took the Lexington Avenue IRT. IRT was short for Interborough Rapid Transit Company, one of two private companies that started the city’s subway system in the early 1900s. The other was the Brooklyn-Manhattan Transit Corporation: BMT. Numbers phased in and those abbreviations phased out, so that by the time my son had moved to New York and told me he was taking the Local 6 train, I at first had no idea that he was talking about my old Lexington Avenue IRT.1

When I started seeing the abbreviation SCT, for stem cell transplant, it didn’t have quite the same ring, but now I am used to it.

Looking back on autologous and allogeneic transplant decisions

After I relapsed, I wondered why I hadn’t gone straight to an “allo” (short for allogeneic) instead of getting an “auto,” short for autologous. I didn’t understand at first that auto transplants are restorative but not curative; they don’t offer the graft vs. leukemia effect of guarding against leukemia intruders.

My social worker told me recently that at least at Dana-Farber, most patients now go straight to the allos. When I relapsed, my doctor said he still would have done the same thing because I got those good years without complications. Even with the chronic conditions, I do pretty well. The neuropathy in my feet acted up with the onset of cooler weather, but still, the other day I walked 12,836 steps (5.6 miles) at The Eastern States Exposition, our version of a state fair. I didn’t get sick from all the stuff I ate, and I held up well enough so that the next day I was able to get up early for tennis, where I channeled my father to hit some great shots at the net.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Brown, N. How did the MTA subway lines get their letter or number? NYCurious. Available at https://www.amny.com/transit/nyc-subway-name-1.31116195/

Comments

  • Daniel Malito moderator
    1 month ago

    @ronnigordon I think we all have mixed feelings about all of our “cancerversaries.” It reminds us how far we’ve come, but also where we were and what we lost that we will never get back. It’s bittersweet, at best, but I also think important not to forget. Well, at least you have us and you don’t have to do it alone! Poignant post, as always. Keep on keepin’ on, DPM

  • Jim Smith moderator
    1 month ago

    @ronnigordon With all you’ve been through I’m very impressed and inspired that you walked 5.6 miles and played tennis the next day. Way to go. Keeping engaged with life is what we all should aspire to. Godspeed

  • Ronni Gordon moderator author
    1 month ago

    Thanks Jim, happy to be inspiring! I just know personally that I feel better when I push myself to do something, so that’s why I do it.

  • Ann Harper moderator
    1 month ago

    I’m not sure what to say about this post. It’s always hard to decide how to feel when a cancerversary comes up. I say, think positively.

  • Ronni Gordon moderator author
    1 month ago

    Hi Ann, I’m having trouble understanding your comment that you’re not sure what to say about the post. It comes across as kind of negative, although maybe I’m reading it wrong. I think that when cancerversaries come up you can’t tell people to think positively if they have mixed emotions, of which positivity is a part, but there is so much more to being human, and to being a human who has had cancer more than once.

  • Ann Harper moderator
    4 weeks ago

    I’m sorry,
    I didn’t mean it to sound negative. I wish you the best.

  • Deb Wesloh moderator
    1 month ago

    A very interesting article. I didn’t know that when you have an autologous it’s only a short term fix. Thanks for sharing your story. And happy belated birthday!
    Glad you are doing well now.

  • Ronni Gordon moderator author
    1 month ago

    Thanks Deb, actually for many people an autologous transplant is a long-term fix and they don’t need another. The other type just has better chances of lasting. It depends on a lot of factors.

  • Yolanda Brunson-Sarrabo moderator
    1 month ago

    I’m glad you’re holding up well and here to share the journey. Though there’s unclarity on the anniversary dates… well it’s all about moving forward. Best to you!

  • Ronni Gordon moderator author
    4 weeks ago

    I guess if I really wanted to I could patch it back together. I’m really upset that the blue book in which I had all my dates disappeared. I’m sure I could ask someone at Dana-Farber or find it in other ways but as you said it’s about moving forward!

  • Yolanda Brunson-Sarrabo moderator
    3 weeks ago

    Indeed Ronni… you got this!

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