Day +9*

*I can’t believe it has been 3 years and 2 months and I’m still writing this blog. Let alone that the days of my life have been restarted not once, but twice. So here I am again at +9 days after my transplant. Sigh.

The chemo was mild, the transplant was uneventful and both mine and Jen’s birthdays whipped past us as we were largely cooped up in my hospital room.

After all the different (and difficult) protocols that I’ve been through, it was hard to believe the doctors when they told me how mild this treatment would be. But they were right. Except for some stomach issues and testing for viruses and bacteria (all negative), I’ve been a perfect patient. I never broke a fever. My ANC count never dropped below 1, so I never truly got neutropenic. I spent a lot of time out of bed and wandering around NIH.

The care here has been second to none. They don’t burden the patient with a lot of unnecessary restrictions and try to give them as much independence as possible. I’ve been able to eat what I want (within the common sense guidelines of  being post-transplant). I’ve been able to leave my room and even go outside for walks and some fresh air. Yes, I spent a lot of the time snoozing in my room or just resting. But staying in good shape enough to get up and go out has been extremely beneficial.

The doctors and nurses listen to every complaint and follow up very quickly. Pain in the back – walk yourself down to x-ray. Runny nose – let’s take a nasal wash and check for viruses. Everything happens extremely quickly and everyone is in the loop. I very rarely had to explain my story.

NIH also provides “whole body care” which includes a variety of supportive therapies. Therapy dogs, acupuncture, massage. A library. Musicians play every day in the main atrium. As a patient, you really expect to leave here better than when you came in.

As my brother succinctly put it: “When you put aside the insurance companies and lawyers, you can get on with the business of healing people.” And that’s exactly how it feels here.

My next steps are baby steps. Once I’m released, I have to return to the hospital every day for blood tests. I’m getting blood and platelet infusions as needed. Although I’m not a ‘boy in a bubble’, I have to take many precautions against catching a cold or getting sick. Masks and gloves when in crowded public places. Hand washing like I’ve never hand washed before. If I spike a fever above 100, I’m back in the hospital. And there’s always risks of Picc line infections or CMV or other nasty bugs that lurk inside me.

Then there is the GVHD (graft v. host disease). The sun is my enemy – it can really aggravate GVHD. I have to wear long pants, long sleeves, hat and sunscreen in the sun. I’m closely watched for any signs of GVHD so they can get a grip on it before it gets too bad.

It’s all do-able. And I’m in good shape. The goal is to stay this way.

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13 responses to “Day +9*

  1. Very encouraging news!

  2. NIH sounds amazing. I am so glad that you are there. I hope that this phase of your life can end soon and be replaced with a phase that isn’t as consumed by health and its pursuit.

  3. So glad to hear this! Wishing you nothing but continued good care and good news.

  4. what kind of music do those musicians play in the atrium? you should yell “Freebird!” next time they’re having a jam 😉

  5. Craig Diamond

    Keep up the baby steps and you’ll be running before you know it. I’m relieved to hear this process is tolerable and not too barbaric. Be well.

  6. Stevie Pants I am so glad that you are being well taken care of. You are precious to a lot of people. Things sound like they are on the upswing…
    I look forward to the day when you retire this blog and go on the road with the atrium band…I am sure they “Need more cowbell!” XO to you and Jen

  7. Baby steps for sure, and it looks as though those steps are gonna lead you right to that rainbow!!
    All great thoughts my friend!!

  8. “Masks and gloves when in crowded public places. ” HEY! You’ll be just like Michael Jackson, only a lot less child-abusier, and well, you’re obviously blacker, even without going in the sun. Maybe you can get one of those cool red sequined jackets and someone to walk around holding an umbrella over you! That would be awesome! Maybe Fonzworth Bentley is available – I’ll look into it. LOVE YOU!!!! LOVE JEN!

  9. Barbara Montone

    We just want to echo what you’ve already heard… that we’re really glad that NIH has just what you need at this point, and hope that you continue to get good care and good news so you can get on with the rest of your life! Love, Greg and Barbara (Joe’s sister)

  10. Deep rest and peace for you and Jen. I’m hoping that you know that you are connected.

  11. You made my month! SO HAPPY!

  12. friend of Jonathan, here, rejoicing that the transplant was uneventful!! whooo hooo!! and grateful for your getting up….and soon, OUT!

  13. I know you mentioned in another post that you don’t really read other’s blog posts. I usually don’t either, but stumbled on yours while looking for any new research on Adcetris. I was diagnosed Aug ’08, re-diagnosed June ’09, and re-re-diagnosed Nov ’11. Had an allo transplant this past April. I just wanted to show a bit of solidarity. Every post I read I just kind of nodded my head and thought that so much of this stuff feels isolating, but really there are many more people out there going through the same thing. Best of luck in your continued recovery!

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