We are in the study!

Thanks to all your prayers, I will be definitely going up to UMass on Tuesday for the bone marrow harvest on Wednesday.  Mel and I were up in UMass for a Friday morning appointment.

If you remember, I detailed the procedure in this post.  This is the first step of actually participating in the study with actual drugs.  Everything before this has been for observation and making sure I’m actually able to qualify for the study.  Disqualifiers include (probably); feeding tube, ventilator, too slow progression, too fast progression, breathing assistance, and others.  Not even mentioning the bloodwork.  But, apparently I am qualified!  The great Goldilocks of qualification!!!

Our visit this week was really good!

I’m a Constitutionalist

We flew up Thursday evening, got into our Ford Focus hatchback and drove to Worcester… and arrived at 730…  We were literally two blocks or less near “Volturnos” restaurant but we were both so beat we just stayed in and had snacks instead.  The Holiday Inn express is nice… but, the beds are too soft.  I was swimming.  For a dude with ALS in a too-soft bed, it was like being a turtle on its back!

Literally swimming!
Catching a mass in the hotel room – gotta love EWTN

Diane our nurse helped us through the pre-op checklist and made sure I wasn’t dead (blood pressure never reads correctly on the electric readers) and getting us up to 6th floor hematology

It’s a lovely campus

where we met Lynn and the Dr. who will be doing the harvest.  Which…. c’mon, when she’s asking if I’m sick or have a cold or anything, I answer no because I’m not sick.  But… when I have to go lie down on the hospital bed, I sneeze.  Green boogers and saliva everywhere.  C’MON!


Then back down to draw blood, and meet the anesthesiologists, who are also awesome.  This time my veins in my right arm were very cooperative and the blood flowed freely.  I made sure to hydrate. img_4547-1.jpeg

Lastly Dr. Owegi saw me, ran through the tests, and told me I was approved!  A great visit!

I’m gonna let Mel talk about anything she wants in the comments.

I have the details of the harvest right now.  I’ll share with you if you aren’t squeamish.

We fly in to Boston Tuesday night, driving to Worcester from the airport in… well not in an economy car.  APPARENTLY it’s busy in Massachusetts this week so hotels and cars are taken.  We actually get a standard size car!  Woo!

I’ll get into pre-op at 0645 – get into my sexy hospital gown, write “Do not amputate” on various parts of my body, including my head, and go under at 0900.  Conscious sedation and lidocaine, and apparently the procedure is only like 10 minutes or so where they’ll stick me with a large needle and suck out 100ml of bone marrow.

Then a 3hr recover and back on the road.  And HOPEFULLY, we’ll have time for Volturnos!!!IMG_4538

Lastly, and least importantly, if you followed Instagram, Facebook, or Twitter, you would have seen my live-updates from the day.  From nuns in hospital, Bernie Sanders bumper stickers on Audis (irony), Motorcycle and Running magazines in the ALS clinic waiting room (never give up!), and finally, my favorite joke: When told about all the risks and potential horrible outcomes of anaesthesia, I answered, “I have ALS, what’s the worst that can happen?”

You gotta be lighthearted about this stuff, people!!


7 thoughts on “We are in the study!”

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