It's always something...

I am back home again for a couple hours doing laundry, finish a Swan Lake painting for a dear friend's ballet studio, making sure there is nothing in the fridge that will smell bad again, and most definitely missing Juno, our Cairn terrier.

Despite cleaning out the perishables in the fridge we are now approaching the longer-lasting stuff that needs to be thrown out.  Eggs, for instance.  

Dust has started to accumulate where Andy keeps his drawing pens by the living room side table.  He loves drawing when we watch something at night.

The Hospital-At-Home gear also lays dormant in our living room, which even though it was only 10 days ago seems very far away.  

I feel like I've walked into someone else's house.

What day is it?  How long as Andy technically in-patient for this particular stretch?  His hospital wrist band says "Date of ADM: 8/3/26."  The clarity and strength he had on that day (I remember it was grey and very rainy) was much sharper and stronger than now.  He finished his first round of CHOEP chemotherapy to treat his ALCL, and it has been very tough on him.  

He can't sleep, spiked a fever (101.5F), and his lungs are showing signs of a fungal infection.  Fungal infections can be a complication of chemotherapy, and the Infection Disease team wants to begin treating it right away before they are able to even determine which one it is.

They are unable to do a lung biopsy because the procedure is so invasive, and Andy's platelet count is low enough that it is unsafe.  They are unable to add platelets at this time, and for the life of me I can't remember why because I've had so much medical info thrown our way it's all a blur.

They do not want to drain his lung fluid through a small pinhole through the ribs because his risk of bleeding is too high.  They will up his diuretics even further, with hope the anti fungal medication and the Lasix will reduce his fluid overload.

It's just always something else they have to treat.  It's always a new test result popping up with more issues to fix.  It's always more complications, more hurdles thrown in his path.  

And through it all, he is focused and faithful - his normal self.

Wonderful RN Tom, who has been so good to us two days now.

Tom is administering Etoposide, the last piece of Andy's first round. They held it for a time to see if his fever was an allergic reaction to the chemo, then after it subsided resumed the dosage.

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We are so happy to get to know so many lovely people on the floor.

They are in the trenches with us every day and so compassionate.

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Have you seen "Better Call Saul"?  It's our favorite drama ever.  We've watched it maybe, 3 times through?  There is a scene where Mike decides to let Tuco pummel his face into oblivion while he holds the drug dealer's shirt, keeping him there with the hopes that the police will come and catch Tuco on a gun charge.

He gets absolutely hammered over and over by a diabolical opponent.  And he makes it, definitely worse for the wear.  

That's what I feel Andy is putting himself through.  He was given the choice to get into this fight or sit it out, and he has put himself in it and just takes the hit, one after the other, like a prize fighter.

Here's the scene (watch at your own discretion)

The view from our room.

I enjoyed getting a message from Ryan Hacker, one of Andy's former students, and he reached out to say he had a hand in designing part of the building on the left and that it was Andy who encouraged him to go into design at all, and that his life was changed by Andy's teaching.

Messages like this mean so much.

Thank you, Ryan and Claire and all our students who send us even a small ping.

Andy's bedside table, which he will look at for at least another week.

These are just some of the beautiful things people have sent us, and for which we are moved to tears.

Andy's brother and sister-in-law in Japan sent us an OBon card, Matt gave us a cool Pop figure of himself, Patti painted us a lovely water color and wrote a beautiful poem, and many thanks to Sally, Patti & Dave W., my Aunt P and Uncle A, Dan and Josephine wrote us the most amazing card and sent oranges from Florida... and everyone who called and texted their love and support.

THANK YOU

THANK YOU

THANK YOU

I'm getting used to the medical school menu now.

I'm a fan of their soups, I have to say.

Andy can't keep up with the Ensures they make him pound down, his nausea is making it hard, so sometimes I have them instead.  Not bad, not great...

Andy and me in 2009.  

On the wall of my part of the closet.

We were driving to Iowa and stopped at a photo booth in a mall somewhere in Ohio... 

what a handsome devil he is

Ok, back to the hospital.  It's Friday, which means Andy and I love to have pizza to ring in the weekend.  Going to pick some up and enjoy date night.

Chemo infusion, Day 1 + 2

 Andy received his first infusion of the real intensive chemo treatment yesterday, and he did have a very rough night subsequently.  The poor guy was up often, struggling to be comfortable, and eventually spiked a fever of 101.5.  In the middle of the night many nurses came in to help with his breathing, take a chest X-ray and administer stronger painkillers.

When Nurse Christi came in to the begin the first chemo treatment, she put on full protective gear, and placed a bio-hazard marked syringe filled with bright red liquid on the table.  Measured poison to go into my husband's body.  Very surreal to think about.

He is a champ, he does whatever they ask of him, answers every question no matter how often it's repeated, and never complains.  He is in terrible pain due to his weight loss.  The combination of these cancers have cost him all his muscle mass, but we know once he is past this he can put it back on again. 

He says he is "fat" but the shape of his stomach is enlargement of the spleen caused by Myelo Fibrosis.  As the blood-making factories in his bone marrow burn out, they replace themselves with small scars of collagen.  The spleen reacts by taking up the job of making healthy blood, and when it becomes overworked, enlarges.  The JAK inhibitor's job is to decrease inflammation and shrink the spleen.  Then, it's the stem cell transplant that will fix the bone marrow scarring.

The doctors decided initially to go after the Myelo Fibrosis first using a JAK inhibitor pill called Pacritnib (or Vonjo). The cost of one month of Vonjo is $26,000.  Without our insurance coverage, we'd never be able to afford it. 

They believed this was the smartest plan and that they had time to deal with the Indolent Lymphoma second.  However, they realized with further testing this was not the case, and that the lymphoma was aggressive, and the ALCL needed to be dealt with immediately.  The ultimate goal for both of these cancers is to get a stem cell transplant, and knock them both out.

Andy, who was an excellent boxer in his hey-day, tries visualizing knockouts, and I think it really helps him.

It turns out that a childhood friend of mine, Stephanie, also had ALCL and received the same chemo cocktail Andy was getting.  It's something called CHOP: 

 CHOEP is an intensive chemotherapy combination that adds the plant-derived topoisomerase inhibitor etoposide to the standard CHOP framework (Cyclophosphamide, Hydroxydaunorubicin/doxorubicin, Oncovin/vincristine, Etoposide, and Prednisone/prednisolone). It is primarily used to treat aggressive types of non-Hodgkin lymphoma and specific T-cell lymphomas.

When she had her treatments, she ultimately left UMass to go to Dana Farber, since they had the Etoposide in clinical trials.  Etoposide has now been approved and is now part of the ALCL mixture.

The doctors decided to hold off on administering this last part, E, until we know more about how he is responding.

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I hated to leave him, and have been spending many nights at the hospital, but I worry about burning out and getting sick myself.  If I get sick, I won't be able to see him at all, and that would be worse.  So I came home to do laundry and try to relax.

It's very difficult for me to be in the house alone when he is in the hospital.  I am prone to panic attacks, long bouts of crying, pacing and insomnia.

I know he is suffering, too, and there isn't much I can do about it.

The kids have taken our dog, which helps because sometimes she barks at 5am, but the quiet makes me very depressed.  I hope she remembers us when we get back.

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I love these pictures of Joe and Andy's mom, who came by with fresh coffee and a nice chat.  We were happy Matt and Krystine also came by with fun gifts and moral support when Andy had just finished the infusion.

 Joe and Nana should have their own grandma-grandson buddy comedy series

I was so happy at lunch time today to hear a cheerful "Hey!" and see it was Jessica, who is one of my oldest and dearest childhood friends.  She was working at the hospital that day (in the ER) and gave me a big hug (perfect timing) and gave me a boost on her lunch break.  She drove me home after her shift and even checked in before bed.  Turns out our other friend, Paula, (same group from 35 years ago) was also working at the hospital, on the night shift.

It amazes me that while we had lost touch for many years, now, at the darkest point of my life, my oldest friends reappear like magic.  We reconnected a couple years ago after a long stretch away, and now they are here for me like nothing changed at all. 

 

Twilight falls at the hospital from the parking lot across the way.

 

His floor is the bone marrow transplant unit, which is not a common stop on the elevator, I'm finding. 

 

Most days, I'm the only one who will push 8, with the exception of a PCA.  

 

One time, I was alone on the ride with another visitor who was very upset. 

He and I shared an unspoken bond at that moment, we knew each other's plight.

 I'm sure Andy feels it as well when he sees other cancer patients on the floor.

 

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Many thanks to:

 

Nurse Natalie, Nurse Michele, Night Nurse Ryley, Nurse Christi

 

PCA Sandy, PCA Francoise, and sweet Gloria

 

Dr. Pearson, Dr. Suzuki, Dr. Mariano, and Dr. Patel

 

 

 

Watching a guy throw a frisbee to his dog while I get a moment of fresh air as Andy napped.

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 him.

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 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.

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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 baby sis, 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.

 

Her dad is also part of the Hospital-At-Home program.

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.

Andy said to me one night, "Let's dance to this song"...

 

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 our room

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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.

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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 the room 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 the floor hopefully for a long time

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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 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, 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, Mike, Liz, Patti, 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.

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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 his medications.  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 on 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 K, Cait, Andy's mom, my parents, Aunt F and cousin Gina, Aunt J and Uncle J, who drove a long way to see us.  Andy’s dear friend Tony came by who I haven’t seen in many years, as well as our friend Alison, 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.

 

The kids 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 here, 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 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.