And just like that...

 

... we find ourselves back in the hospital.

We weren't home long enough to put away the clean laundry when the doctor overseeing Andy through the Hospital-at-Home program decided it was important to bring him back to 8.

He was retaining too much fluid again, and even with the strict regimen of cutting liquids and administering Lasix, his kidneys were being overworked by the diuretics, medication interactions and the "Minimal Change Disease" brought on by presence of lymphoma.

Nurse Michelle adjusts Andy's heart monitor, which he wears all the time at the moment.

It looks like a cellphone from 1987.

Alexa being amazing by just being Alexa

During this time, my beautiful and wonderful baby sister Alexa had flown in from Los Angeles to spend time with us and help with anything we needed.  

As we were returning from a short trip out, Andy put me on speaker phone with a major piece of news from the doctors:

He does not have Indolent B-Cell Lymphoma as they thought, but an aggressive form called ALCL, Anaplastic Large-Cell Lymphoma.

She advised me not to Google it, which I did not.

The silver lining  is that aggressive forms of cancer respond well to aggressive treatments, as in 90% of patients who receive infusions of chemo - the hard stuff - will see a good response in lymph node reduction.

She felt it was important that we go after the Lymphoma first, then alternate treatments of Vonjo for his Myelo Fibrosis, and then chemo infusions again.

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

At the start of this journey, I was obsessively reading everything I could about Andy's diagnoses, a dizzying flurry of academic and medical texts I tried my best to digest.  I have to know everything going on, what treatments are available, what alternatives we have.  I am not a doctor, but I was terribly worried his system was being overloaded and that the JAK inhibitor was having an adverse affect on his heart.  

Andy, (who is loyal and faithful like Superman, Lassie and John McClane...), trusts them and their care plans.  I risk annoying him when I pepper the teams with questions about interactions etc., and they are kind to answer as best they can and do not condescend to me, and he knows I do it out of love.

It made me happy to hear about a fierce debate the doctors had with the pharmacologist about when to taper off Pacritinib, and when to begin chemo infusions.  

On the one hand, his tumors are growing rapidly and need to be addressed, on the other, he can not risk toxicity.  

They care about him, I truly believe that with my whole heart.  I truly believe with my whole heart that if anyone can beat two rare and serious cancers, it’s him.

We had lovely visits from Alexa, my dad, Joe, Andy's mom, a wonderful coffee / present drop-off from Kate W. and Mark C.

Joe stopped by with fresh coffee from home, and we tried to figure out whose X-Files mug that was

Mark comes by for a great chat. Sadly Andy was dealing with some serious headaches due to tapering down off Pacritnib in preparation for his chemo infusion. He was so happy to see him though.

Sweet PCA Bea, who has 5 kids and is a super lovely person

Side Note:

I made the speech for the Bride's side at Alexa's wedding.  Because the only things I know about love and marriage came from Andy, the speech was mostly about what I'd learned from being married to him for 11 years.  I have to say, I'm glad it was a good one, because I've made speeches before that were train wrecks, so at least that one resulted in happy tears and no booing.

Her presence was a real God-send for me (and us) because her eternal effervescence was exactly the boost I needed to keep from more panic attacks.

Scenes from daily life

the kitchen table. the cloth basket is filled with RX.

The night nurse about to flush Andy's port.

Everyone here has been wonderful and so considerate.

My favorite part of any day now - getting to relax with Andy at twilight.

We looked out the window to try to see any Perseid meteors on August 13th.

I think I saw one, and Alexa definitely did!

The PCAs will take his vitals at 1am and again at 5am, and I will get up with him during the night to help with anything needed, so this time is our most peaceful and romantic.

Andy working in his sketchbook while the pre-season Pats game is on. 

We cherish these quiet nights together.

Our room includes a view of the old Worcester Hospital (or Insane Asylum as it once was) 

A common challenge at our high school was to try and break in to that creepy place, but I don't know if anyone actually did it.

Thanks again everyone for reading and for your love and support.

Please pray for his first chemo treatment on Monday.  

We love you.