The Breaking Point

 

I'm not sure where to begin with this post; so much has happened and we just continue to sink lower and lower.  Andy experienced his 6th day of 24 hour painful diarrhea, getting up with great pain every time, shaking and trembling with exhaustion.  He is so thin he is officially diagnosed as Malnourished.

Every time we are finally able to get him comfortable again with a puzzle of pillow and IV line placement, we will do it all over again in about 45 minutes.  If not, someone will come in to take vitals.

The doctors have told us his condition is serious and making it out of these two cancers is a rocky road.  He is unable to accept a bone marrow transplant at this time, but we hope and pray he can get to that point in the future.

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I'm realizing there is no linear progression with the stages of grief.  I thought they began with Denial, then some order in between of Bargaining, Anger, Depression and finally (supposedly) Acceptance.

Currently my pathway with these things has been a very long stretch of Bargaining for many months ("If I was a better person, thought better thoughts, did nicer things, this wouldn't be happening to him." et cetera et cetera.)  I crossed over into Anger yesterday, and blew up in Aaron Sorkin-fashion to a room of doctors and family.

 

After two months, I finally lost my mind.

Andy has not been able to get the bronchoscopy procedure done to find out what is in his lungs.  His risk of bleeding is too serious, his platelet counts are too low.  So they asked him to cough into a cup, but he was unable to produce a good enough specimen.

Wave upon wave of "teams" and specialists came in to give us one gut punch after another.

Nephrology: "Hi... how are you doing today...  So the broad-spectrum anti fungal we put you on to catch this thing has done some kidney damage, and the contrast we gave you for imaging has also done damage to your kidneys."

N: "Do you have any questions for me?"

Me: "Yes, so has the chemo helped with the lymph nodes that you said were hurting his kidneys to begin with?  Are you able to see if there has been a benefit to that?" 

N: "I can't prognosticate on that."

Me: "Do you know why his oncologist is holding off on the Prednisodne?" 

N: "I can't answer that."

. . . . . . . . . . . . . . . . . . . 

Infectious Disease: "Hi... how are you doing today.... so the kidney issues we are seeing are looking like they have been caused by some medications... okay... we are going to scale back and change course... the damage should be reversible..."

ID: "Do you have any questions for me?"

Me: "Yes, so has that anti-fungal that you gave him show any benefit right now to the possible pneumonia?" 

ID: "I can't answer that."

 

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The Palliative Care woman came in at the same time as the Resident Doctor from the previous morning. His son and mother are also in the room.  With her was another doctor I hadn't met yet and whose only exposure to me will be a gigantic tirade.

The teams announced themselves to each other, careful to mention titles, their hospital hierarchy.  They seem very proud to demonstrate their status to the room.  After the 374th question to Andy, where his condition is so poor he can barely sit up, he looks to me with his large blue eyes to help answer. 

 

Palliative Care: "Hi... how are you doing today.... Who do you have here with you... Oh you're wife I see.. Have you met with anyone from our team before?"

Me: "Yes, we met with Dr. S, the psychiatrist."

 PC: "Oh... Dr. S is a psychOLOGIST.... ok... not a psychIATRIST..."

. . . . . . . . . . . . . . . . . . .

Resident (student) Doctor: "Hi... how are you doing today... "

New Doctor: "Hi... how are you doing today..."

The New Doctor proceeds to tell us problem after problem, hurdles, complications. Finally I hit my breaking point.  

What benefit have we seen from the first chemo treatment?  Are we switching him from Pacritnib to Momelotnib because Momelotnib has a better track record when used in conjunction with chemo or because Pacritnib is formulated for people with Thrombocytopenia, which he has -- Can anyone actually answer my questions?  Can they manage to NOT do it in a condescending way?

My husband has been given a devil's bargain.  Do nothing and maybe you'll live 3-4 more years, OR, you can take allllll this poison and possibly be in unnecessary excruciating pain and possibly die early - before the birth of a long-awaited first grandson.

Yeah, there's a lot of pain here and he doesn't deserve it.

And shaking, I grabbed my tea and stormed out, certain the nurses heard the whole thing.  I don't regret what I said, but worried that I embarrassed Andy.  That would be worse.

Adam found me in the waiting room by the vending machines and gave me a pep talk and a great deal of comfort. 

 I was happy in the night to run into Paula, who also have me a big hug before running back down to her duties around the ICU.

I don't blame the doctors and nurses, medicine, I don't actually know where to even place blame.  We are just so very tired.  Anybody who gets dealt such an evil genetic hand doesn't deserve it.  Many people have suffered and are suffering who don't deserve it.

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In the evening, Andy, who again is weak, arms and legs look like they were beaten with a bat, steadied himself on me in the darkness and told me this:

 

Andy: "Oh sweetie... don't worry.  God came to me in a dream.  Just now.

The three of us were walking and His arms were around us.

He said it's going to be alright.  Okay?"

 

Me: "Okay."

Many thanks to:

RN Pam, Francoise, Paula, Sandy, and Gloria

Bill and Kate, Mike, Jim & Jimmy, Jessica L., Jessica R.,

and all our friends and family who sent us prayers and good messages this week

THANK YOU 

 

 

 Sweet Paula runs back down to the ICU after giving me a hug