The Journey to Day +100

Posted: November 7, 2017 in The Battle Against MDS

Today is Day +69

Between my last update (Day +30) to today, my progress has been moving forward in leaps and bounces. To wit:

  • I gradually eased my workouts up to 40 minutes on the treadmill and eased the speed up slightly and incline up slightly. As well, I increased the length of time I held 10-pound dumbbells while on the treadmill to over 15 minutes. Also did 42 situps before starting. Key is to start low and add a minute and one situp each day.
  • Eating is normal
  • Weight gain up to 207, so five pounds since release
  • Released from the blood transfusion unit weekly visits, and would start at the regular transplant clinic.
  • Discussed removing my Hickman line
  • Breathing finally felt normal. Deep breaths had felt slightly burning…almost like a heartburn.
  • Chimerism results came back and it says that 97.9% of my blood cells are from the donor. The target was to get above 95%.
  • Hair alert! Getting localized growth on my chin and moustache. A shame I can’t grow a full beard yet, but maybe I can pretend it’s 2002 and just grow a goatee

 

Of concern:

  • Still have some redness around the Hickman line
  • Super light pigmentation under armpits and around groin

 

The Big Bump in the Road

No sooner had all this moved forward when…my lymph node swelled up quickly and painfully. On Day +60, the node under my jaw on the right side towards my ear started to swell. By Day +61 it had swelled up considerably. No other nodes did this. It was painful enough to disrupt my sleep.

Since I was going in on Day +62 for a bone marrow biopsy (hopefully my last?) anyway, we waited until then for the doctor to take a look. Doc put me on antibiotics and said I could take Advil to help with the pain. Antibiotics did nothing. The node has hardened. And now they have me on new antibiotics that are sent through my Hickman line and require me to walk around with a bag and pump. Looks like it’s viral though, and Dr. Santosh figured it could be similar to the virus that leads to mononucleosis.

Anyway, workouts have stopped. It’s been nine days since my last workout. I feel soft. I feel like recovery has been paused. And I don’t like that because I like to push forward. But all I can do is wait. The wait could be a few weeks.

On Thursday, Day +71, I ‘could’ get the results of my bone marrow biopsy from last week. It should say that I don’t have cancer. And as long as my blood counts remain normal going forward – I will never have a bone marrow biopsy again. Last week’s was my seventh, and I’d say it was the second easiest. Just grit your teeth and bare it, don’t give the doc a reason to hesitate – he/she needs to just get in there quickly and get it done.

 

Anyway. Will update when I have something to update.

Dobber

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