Fighting to get on the card

Day 9 of this hospital stay

Andy sketches while he is feeling good

I have decided to update more here, not just for family and friends but also for my own peace of mind, and for posterity, as it were, through this process.

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We are learning the extent of Andy's condition at the moment, which seems to be changing due to both the cancers and the medications he is on.  We found out today that he is having border-line heart failure issues, which may be possibly brought on by the JAK inhibitor he is on.  They are working to determine what is causing this.

A heart stress test, a kidney biopsy, lymph node biopsy ... he has really been through it.  In addition to these things he is in a very restrictive diet, painkillers, anti-nausea... etc.  However, we are grateful to the many excellent nurses and staff members who make life there a bit easier.

He has a very hard and long battle ahead, and his particular cancers are beaten by a slow and steady fight.  The key is to not be trod down with the grueling pace, even when the side effects are very painful.

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Andy said to me one night “it occurs to me, I’m not even in the ring yet, I’m fighting just to get in the card."

In order to even start fighting Myelo fibrosis and B-cell lymphoma, we have to treat a number of other issues: reduce his spleen size, strengthen his heart, cut down inflammation in his kidneys which is caused by the lymphoma, put some weight back on, stay hydrated, offload excess fluid from the body … all while remaining infection and complication-free.

It’s overwhelming but he is a fighter, no doubt.

Here's Danielle, one of our favorite people helping Andy with his port.  So many incredible nurses make his time there more bearable, and they truly are an invaluable part of this journey. 

He is so kind to all the nurses.  He remembers their names, their kids’ hobbies, asks how their vacation was.  He never complains or snaps, he never gets mad at God or fate or asks “why me?”, he really is my hero.  I need to be stronger for his sake.  I know he can do it, but watching him suffer is such torture for all of us.

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We are fortunate for our incredible support system and we had lovely visits from the boys, and our daughter-in-law Krystine, Caitlyn, Andy's mom, my parents, Aunt Fran and cousin Gina, Aunt Jeanne and Uncle Joey, who drove a long way to see us.  Andy’s dear friend Tony Antetomaso came by who I haven’t seen in many years, as well as our friend Alison Cowell, who was at our wedding. 

My mom, Aunt Fran & Gina, Jeanne (and Joe off to the side) came very far to see us, bringing food, gifts and lots of great stories.

 

Krystine, Matt, Adam, Joe and Andy yucking it up as usual.  So many great laughs like always.

Caitlyn stopped in with a hamburger and a nice chat.

And then family was off again, as they have to be from time to time.  

But they will be back, and we will have more laughs and hugs.

Gina & Juno pick me up and take me home for a quick shower.

Our hearts are so full of love and gratitude. 🩷

Then we watch the sun set, the students and professionals leave, and the twilight settle over the campus and hospital research center.  I make my bed from the recliner and Andy and I talk before he takes a strong pain killer.  

He always holds off on taking his Atavan "because I want to spend more time with you."

Andy often deals with very severe fatigue, sometimes vomiting and quite a bit of nausea. 

As he says, like in football, you have to pivot the play depending on what is happening on the field.  

We had to cancel our Dana Farber consultation due to his hospitalization, and we are hoping with more test results from UMass, they can share that information with them in case they can offer more help with Andy's case. 

One night, while massaging his legs to help with the swelling, we were just looking at each other and smiling in the quiet darkness.  I think we entered into a state of grace about the whole thing.  

(I promise it was this because he hadn't taken the Atavan yet.)

Our corner room on the Bone Marrow Transplant floor, or 8 - or as the lady in the elevator told me "Oh, I hate having to hear that number..."

One night we could watch an amazing heat lightning storm from the top floor

Andy has been in this room now for 9 days, and this will be his third time in two months having to be confined to a hospital room for a stretch of time.  Little things start to pop up in daily living here.  You start to know where the extra spoons are, the ebb and flow of medical students and staff, the way the donuts will be totally stocked on a weekend but wiped out on a Monday, how to find free peanut butter tabs in the cafeteria etc...

Andy really is such an incredible person, not that I needed any affirmation.  But seeing him go through this hell, and seeing him fight with every fiber of his being... I'm glad I missed out on that Beastie Boys concert in 2005 because I'm glad I was able to spend that time with him at Tortilla Sam's...

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It's just too painful being at the house without him, it's better to sleep at the hospital with him.  His faith keeps me going. 

Sic Semper Fidelis.

Keep the Faith.

My favorite human being on the planet.

My hero.