Wednesday, December 30, 2015

Back to Full Health

I'm going into the New Year ready to try something new: being healthy.

About six weeks ago, my neutrophils came back. It still strikes me as funny that all my friends now know what neutrophils are, but for those who don't, neutrophils are the most abundant cell in your immune system. They are the leading infection fighters ... unless you don't have any.

Here's the story, briefly revisited:

In November, 2014 I was diagnosed with lymphoma after a hospital visit for a blocked bowel. The tumor was right at the connection of my large and small intestines, and though they never measured it, they think it was about the size of a baseball.

The exact version of lymphoma was "enlarged b-cell diffuse lymphoma" or something like that. I didn't study it like I studied my leukemia. The lymphoma was supposed to be relatively easy to deal with, and so it was. I was supposed to get six rounds of chemo, and the rounds were going to be much easier than the leukemia chemos.

I only got four because after the fourth one, my immune system never recovered. My neutrophils never came back. That went on for nine months.

During those nine months, February to November of 2015, I got booster shots anywhere from 3-5 times per week. Those only boosted my neutrophils a little, and I had at least 10 visits to the emergency room for fever or vomiting. Most of those resulted in hospital admissions.

No one knew why I wasn't producing neutrophils. One of the chemotherapies I received was Rituximab, but the Vanderbilt doctors told me I just didn't fit the pattern for neutropenia associated with Rituximab. With Rituximab, one's neutrophils usually come back, then drop a month or two later. Not only that, my neutropenia didn't happen on the first dose of Rituximab, but the fourth.

My local hematologist-oncologist (blood cancer doctor) never worried. He assured me that whether it fit a pattern or not, my neutropenia would end. He would give me the booster shots to keep me as infection-free as possible, and we would wait.

We waited nine months, and now it's over.

It's weird. It's like the quiet after a storm. What do I do now? My life had been focused on blood draws, Neupogen™ shots, avoiding possible sources of infection, and making trips to the ER for nine months. Now all that was gone rather instantaneously.

Really, it's remarkable. When I stopped getting the almost daily Neupogen® shot, my energy returned. I'm almost weaned off the medications I was taking for the bone marrow transplant back in 2012 (for leukemia). I'm a normal person, boom!, just like that.

I spent the holidays with family, doing twice a week visits to the clinic to check my blood. I didn't have to avoid children. I could shake hands and hug without fear of getting sick. Weird.

So now it's December 30. I can't say I'm going to make New Year's resolutions this year, but I am going to schedule my time as though I were healthy. I'm going to write more and get back into my distribution business a bit more. Who knows? It's like returning from a long trip. I have to figure out what to do with my life.








17 comments:

  1. That's great news, funny I was just thinking about you and wondering how you were doing. Best wishes and a very happy 2016 to you and your family. As a five year lung cancer survivor I know how it feels.
    Carol

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    1. so good to hear Paul. God is faithful.

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    2. Thank you, Carol. Best wishes to you as well. Five years is the magic line of reduced worry, right? You can throw the word "cure" around at that point?

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  2. I hope so Paul but I don't think you are ever 100% free of the worry but I certainly don't think about it as much now, just take things as they come and will cross the next bridge if it arises.

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  3. Hot ziggidy dog! Best news I've heard all year! :) Here's to 2016! For both of us!!

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  5. It has been a year now since my mom got her bone marrow transplant at sloan Kettering she is doing great now but last year when she got graph versus host disease it was touch and go for a while I am so happy that you are doing better and so is she!

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  6. Glad to hear she's doing well now!

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  7. I have leukemia CLL/SSL--diagnosed in 2011. I am in remission. Glad to hear things are looking up for you.

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  8. In remission from CLL? That doesn't usually happen, does it? Isn't CLL usually ongoing, constantly treated, and never in remission? Congratulations!

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  9. Hey, Paul! How are things going? Haven't seen anything from you in a while.

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  10. Aargh! I wrote you a long, really nice comment, and the wi fi turned off and it didn't post. I am heartbroken. I have to go home from the coffee shop I'm at. Don't worry, I will rewrite it this evening. Thank you so much for keeping up with me. I do love hearing from you!

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  11. Second attempt to post! Glad to hear you are doing ok. I have just had my 7 year scan but won't get results until September 1st. so fingers x.
    Carol

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    1. Have you had any problems previous to the 7 years? I am at 5 and 1/2 years post-transplant, and I never consider the possibility of relapse anymore. Maybe I should give some prayer to that! My doctors tell me, though, that they treated me so thoroughly that after two years there was no real chance of relapse. I just prayed for you, Carole.

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  12. I seem to have problems getting my reply published! So trying again.
    Thanks Paul, no I didn't have any problems before dx. You have been fortunate, I found your site while trying to get info on that rare cancer they thought you had as a friend had just been dx. Poor man didn't even get six months after horrendous treatment and transplant. I don't worry about it too much now Paul but I know several people who have had recurrence after 5 years so it is still at the back of my mind. One who had stage 4 had a recurrence last year after 17 years! His original samples were still in the hospital in NY, he is in the medical profession, and it is not a new cancer. Still he saw his kids grow up which he didn't think he would. Stay well. Carol

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