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After Relapse, Putting My Boxing Gloves On

After Relapse, Putting My Boxing Gloves On

When my doctor at the Dana-Farber Cancer Institute explained my treatment plan to me in 2003, he said that remission is not cure.

He said that after two years, you can break out the champagne. But only after five years can you use the word cure.

Two years arrived. But I only had coffee with friends, not wanting to jinx myself by celebrating too loudly. If through magical thinking I believed that by being humble I would make it to five years, it didn’t work.

Relapse hits after over 3 years

I relapsed after three-and-a-half years. My doctor said they would get me back on my feet. But I was on my feet! A partner and I had just won a doubles match at a regional tennis competition. I told him I felt fine. He said that without treatment, I wouldn’t be fine for long.

My transplant had been an autologous one, using my own new, clean stem cells, an “auto” for short.

Apparently, a leukemia cell, a bad actor, had snuck in.

This time I would get an allogeneic transplant – using donor cells – an “allo” for short. But first I would need to get chemotherapy again.

Preparing for transplant

I got the transplant, but six months later I got something called graft failure. This meant the donor had packed up his bags and left. I remember being admitted into the hospital into a dark room whose window opened onto an exterior wall. I felt as gloomy as the space. My doctor sat down and said that I although I hadn’t relapsed, my bone marrow was basically empty.

In an e-newsletter about my case, my caregivers wrote, “Chimerism had been 98% donor at the end of March 2008, but declined to 40% by the end of April 2008, consistent with late graft failure.”1

So I got more chemotherapy and a third transplant, using the same donor, in June 2008.

Six months later, I relapsed again.

I wondered why they had used the same donor. They answered that they believed the graft failure was a fluke. I was naturally very upset, but there was nothing much to do about it except to go along with the plan. It called for a stronger chemotherapy followed by a stem cell transplant from a second donor.

Tough love

When I was readmitted to Brigham and Women’s Hospital with fever and neutropenia in December 2008, I sought out a nurse whose tough love had helped me the last time.

“You can have your pity party for a day, and then you’ll put your boxing gloves on,” she said.

So that’s what I did. I got more chemotherapy and got the transplant. I went into remission, but my system rebelled. I had multiple life-threatening infections and went into a coma induced by kidney failure.

When I woke up, I couldn’t speak or walk. My legs were so swollen they looked like tree trunks. It took two nurses to turn me over in bed. I was in the hospital for nearly four months.

Four transplants later

I have since learned that although three transplants are unusual, four transplants are rare.

This is a crazy story that I hesitate to tell, out of fear that it will freak new patients out. As a volunteer for Dana-Farber’s One-to-One program, in which survivors give support to newbies, I always say that the things that happened to me are not the norm.

They don’t seem to mind hearing about it.

Because here I am, nine years out from that fourth transplant, playing tennis like none of it ever happened, playing with the grandchildren I thought I’d never see, and enjoying other activities such as walking my dog, reading, writing, traveling, and telling my story.

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. Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML). Dana Farber Cancer Institute. Available at https://www.dana-farber.org/for-physicians/clinical-resources/hematologic-malignancies-resources/advances-in-hematologic-malignancies-newsletter/issue-3-spring-2014/complex-case-study--four-stem-cell-transplants-for-acute-myeloid-leukemia-(aml)/

Comments

  • djohnson105
    8 months ago

    Thank you so much for sharing your story! What an incredible journey you’ve been on and incredible strength that you’ve shown. I truly believe that Jesus Christ used those transfusions to heal you (Matthew 8:17) and is now using you to impact so many others! I can’t imagine what you have gone through but I praise the Lord for bringing you through so much of it. Such an inspiration, I know you are impacting current patients daily!

  • Ronni Gordon moderator author
    8 months ago

    Thank you for your kind words!

  • pfh724
    8 months ago

    Very scary story Do not know what is going to happen to me with cll ,do not know what to expect!

  • Yolanda Brunson-Sarrabo moderator
    8 months ago

    I know this is scary, understand that everyone has different experiences. It’s best to discuss with your medical team all anxieties you have and make sure they explain everything every step of the way. Best!

  • bluchs
    8 months ago

    Ronni Wow!
    I actually relapsed after only 10 months.
    Tough Love!
    You have been through so much, my God, 9 years.
    I am Praying that this is the end of Cancer for you.
    May God Bless you and give you a good life from now on.
    Enough is enough.

  • Rachael Y
    8 months ago

    I’m so happy to read this story. My husband is in the thick of it right now. NHL CNS lymphoma, stage 4 ( but we were told CNS lymphoma is all stage 4. He’s been in the hospital then to rehab, back to the hospital then back to rehab cycle since October. He is in remission and by round 6, we will be faced with stem cell transplant, more chemo, or end chemo. He doesn’t walk or do any self care except eating and dressing. I am scared and try to remain hopeful. Your story has given me hope. I am sending as many vibes and prayers as I can to all fighters out there to beat this awful disease. #cancersucks. #yudtstrong

  • Ronni Gordon moderator author
    8 months ago

    Glad the story helped you! It’s crazy but true. I wrote another post about my experience of getting a stem cell transplant. If you want, I can provide the link in a comment, or you could search through my posts if you want. The actual receiving of the stem cells is not a big deal. Either way, it’s a rollercoaster. Good luck to you and your husband.

  • Ann Harper moderator
    8 months ago

    Good luck to you as you and your husband go down this road.

  • hawkfan01
    12 months ago

    Wow! You are a brave warrior! So glad you came out a winner. It’s very interesting to read about other’s stories. I am in remission for about a year and a half so far.

    Diagnosed 5/17 : NHL Marginal zone, B cell. Stage 2b. Treated with 4 infusions of Rituxan.

  • Ronni Gordon moderator author
    12 months ago

    Thanks! Glad you are in remission. It’s interesting that under the umbrella of blood cancer there are so many different diagnoses. If someone told me a detail about a leukemia type I would understand it, but for lymphoma I have no idea what any of it means…except remission…which of course sounds great.

  • Daniel Malito moderator
    12 months ago

    @ronnigordon Glad to hear it Ronni, you are right in that you never know how things can change overnight. Keep on keepin’ on, DPM

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