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.

Health updates & Hospital-at-home

a quiet morning from 839

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 August 11th:

Many things have happened in the 2 days since my last update and many things I hope I can remember to add here.

One of the many teams that works with Andy (nephrology, oncology, cardiology, internal medicine, palliative care, a psychiatrist, and once, a chaplin) came in to give us more news on Andy's situation.

They said that his kidneys are expelling too much protein at the moment, which they believe is due to "Minimal Change Disease" caused by the lymphoma.  We can't treat that with the appropriate chemotherapy at the moment, it will be too harsh on his system, so steroids will be used in the interim.

They warned us that using prednisone will come with it's own side effects such as anxiety, predisposition for infection, blood clots and possible changes in sleep, mood and heart rhythm.

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

One of the things you deal with being treated at a teaching hospital is the myriad of students who will sometimes accompany the doctors.  These students mean no harm of course, and do their best as you can imagine, but it breaks my heart to see my husband used as Exhibit D while he is suffering.

"See how when you press the edema, the skin will stay pitted?  See the raisin-ing of the skin?  This is due to rapid fluid retention and depletion..."

Before the lymphoma biopsy, they made him fast for many hours - twice - then didn't put him under but used localized lidocaine, while a student dug around the lymph nodes in his groin for a tissue sample.  Finally the doctor said, "I'll just do it."  They took 7.

It also seems that every time I leave, a new team comes in with more news...  

I stepped out for a tea while he took a nap and when I returned he said cardiology was back with more updates; his heart isn't as strong as they'd like it to be, so they'll introduce a new medication for that as well. 

8 pills are part of this complete breakfast for Andy. 

The Good News

Andy got to go back home under a program called "Hospital At Home" which is still technically in-patient, but he is in the comfort of his own bed!  I was so excited I worked all night on a cover, then the next morning sped over to the hospital, packed all this stuff in room 839 and we patiently waited for the stretcher to take him to the ambulance.  Our oncologist, who we love very much, Dr. Mariano, came to see him before we left. 

I sped home, the ambulance beat me as you can assume, and eagerly got Andy set up in the living room.

Now, a nurse visits us twice a day, administers small packets of all his new medications, takes blood from his port, and gives him a once-over.  He is monitored through an iPad, and I take his blood pressure and weight three times a day, like the techs do at the hospital.  We also monitor all the fluids he takes in and relieves, to make sure his kidneys are working.

we say goodbye to floor 8, hopefully for a long time

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

August 12th:

It was our first full day back in our house in 10 days, which was nice, and I see hallmarks of how time passed while we were away.  The date on the block calendar was incorrect, the left-overs in the fridge smelled awful, and the plant on the deck was definitely dead.

Andy is dealing with this as best he can, and for someone who never did so much as a joint in his life, his system is now being pummeled with more chemicals than one can fathom, and he is an absolute champion for bearing up under all that weight.

He uses oxygen now, which helps with periodic dizziness.  He also finds it difficult to go up and down our stairs.  I'm grateful we left the carpet on the stairs when we redid the floors.  At first, we did it to save money and it just looked bizarre, but down the road it's pretty helpful.

* Andy's care will require our full attention, so I will temporarily quit my job as a freelance artist (just pause for a bit) to focus on him getting better.

Then, my wonderful sister Alexa came all the way from Los Angeles to visit, and we plan to try to see the Perseid meteor shower tonight.

Andy gets a call from a dear friend Mark Conti, who he worked with at the newspaper

We are grateful for any and all things we receive, and hang up all the cards on the door frames.

Thank you to everyone!

To Our families, our church, our friends, our loved ones, our neighbors

 recently: Elaine C., Mike S., Liz W., Patti R., Lindsay & Alex;

EVERYONE who gave to the GoFundMe

 So soooo many more

We love you

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For those interested; more scenes of hospital-life:

as seen in the parking garage - this is not my car

Andy hates this mug, which I knew he would - it's not his style at all!

But that's why we had to get it, that and it was the only one in the gift shop... had to get myself tiny terrariums!

Andy F. order #8002 is almost ready

special attachments for the Six-Million-Dollar man

The toughest guy I know.

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.

. . . . . . . . . . . . . . . 

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.

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

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.

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

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...

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

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.