Higgs.qzqqqqq

Day T+ 41 and still counting.

I thought I would leave in the first line.  I captures both of our mental states pretty accurately.

Getting out of the hospital apparently is a euphemism for you can sleep at home now.

What the big surprise is that you have 7:35am appointments at the doc's office for eternity.  Ok...

Then you find out those appointments last 4-6 hours, possibly more.  Wonderful...

On our first visit,  Boone complained of chest pains.  Dr. S. poked him in the chest and asked as Boone howled in pain, is that the spot?  Yep.  That's the pain from the CPR three weeks ago.  My advice is to try and stay away from the ICU and especially try not to go into cardiac arrest.  They beat the crap out of you.

Each visit begins with the obligatory blood draw.  Then they put in an IV to give you whatever chemical cocktail the blood draw determines that you require.  Thus the variation in length of stays.  Some of the meds are potassium or magnesium and more immunosuppressants, antibiotics, saline, and nothing that anyone could consider "happy juice".   The best that can be said for it is he gets to nap during the IV part, and I get to leave.

For me, that's a sanity saver.  (I wonder what shape or taste a Sanity Saver would have?  Would they come as a single serving, or in a Sam's size crate?  An escape hole in the center?)

Hopefully, today, Boone will replace me as the blogger.  It's about him and the CMML not me and my woes.  For all of our German readers, I assume you must be here because you or someone you care for has CMML.   I hope his insights will help you understand better what to expect.  Of course no two patients are the same, but no matter your age or  co-morbidities CMML is a very tough opponent.  You must fight it with your mind as well as your body.

If you are the patient, I suggest you don't research the white papers for the disease.  Let your caregiver do that, and don't ask questions.  The less you know I think the better.  Also keep in mind, this is such a rare disease that there really isn't a lot of data for the docs to use.  It's a whole lot of experience with other blood cancers and a dribble of CMML info.   Boone is our clinic's second CMML patient.  Statistically that makes them well experienced.  It's a BIG clinic.  Thousands of patients.

There were days where I could tell the docs were very worried.  When you hear " bad", "wasting", "worried" from the doctors, you know things are not what they want them to be.  Our doctors are the best at framing everything in the most positive manner.  Probably all cancer doctors are adept at that. So less encouraging words are definitely red flags.  But somehow there is always something else to try to see if it works.  Sooner or later, they will figure out your magic cocktail.

Even with so many set backs Boone is still here and getting stronger everyday.

And B-, BS, donor, lil sis, and bro;  he is having hot flashes.  ;).

I guess it's a good thing he likes pink and Pink.

(Boone did post.  Because I'm later in the day, his is below).

Thanks to everyone for caring...through this I've learned that when you don't know what to say, just be there.  There isn't anything to say.  Just be there.

Thank you
Gracias
Danke