The Wake

In the morning, I grind fresh beans make coffee for us.  

I talk to Andy for a bit and share the food people give.

The "Get Well Soon" cards have become "Sorry for Your Loss" cards.

On September 15th, ten days after that terrible morning, his wake was held.  I decided to go back up into Andy's studio and choose a small piece to bring with me.  Andy is known for loving Batman, but I know he really loves Mike Mignola's art, (his favorite Hellboy story is the one-shot "The Corpse" and he loves Mignola's Batman comic "Gotham by Gaslight") so in his giant box of Batman pins I extracted the single Hellboy and fixed it to my black dress.  I put on his watch on my right, the watch he gave me on my left, the vintage diamond earrings he gifted me and added his wedding ring to the first romantic present he had given: a handmade beaded necklace of blue and red.  

 ....................................[]....................................

"The blue beads are the ocean, and the red is our love." ~ Andy

 ....................................[]....................................

My family picked me up and we drove to the funeral home, where I would see my husband for the first time since leaving him, passed away, in his ICU bed.  We had asked that the casket remained closed.

Andy's favorite music was playing when I arrived in the reception area.  "Is this the playlist I sent?" I asked Matt.  "We added some to it!" he said.

Song after song was perfect.  It was so much better with their contributions.  Mine was just a small reflection of what music he and I shared together.  Through the front room we set up photographs, our wedding album, artwork, comic books and a mini replica of Andy's studio:

The girls also created 4 incredibly beautiful and moving photo boards.  We created a joint album of just Andy's pictures, and I gazed at his sweet face in the eras before I knew him.

Andy at 14, as a new dad, washing Jack the puppy in the sink.  (I knew Jack when he was an old boy, but seeing him tiny in Andy's palms was so sweet.)  I loved seeing more of the boys as babies... as children in their Halloween costumes.  I loved recognizing the same sofas, kitchen doorways and wallpapers.

I even loved seeing a picture of Andy with his first wife.  I am glad he met her and that they had three boys together.  The kids are who they are because of that relationship and I wouldn't want them to be any other way.  I don't want them to look different, sound different, or act different, have different memories or lives.  Things happened in that order, and I'm grateful they accepted me, called me theirs.

 Look at how adorable he is in high school.

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

Then, Bruce, our funeral director gave me private time with Andy.  I felt my pulse starting to race as we walked towards the door.  My hands started shaking.  He let me in, and I saw his casket in the center, the side pillars overflowing with flowers people had given us, a stunning arrangement from Ari, his former student, one we built for him with Sally and Renee, and the casket spray, a gift from me.  

Like he asked for every spring, the room was bursting with blooms.  And I broke down and went to him.

I couldn't even kneel at the bench, but had to hold him and kiss the lid, weeping.  I spoke to him for about 20 minutes, the wood and flower scents were clean and fresh, my marks left on the finish.  The kids came in, had time to reflect and talk privately, and we had a family prayer service.  We lined up and guests began to arrive.

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

For the next 3 hours, we had a large, steady crowd until the end of calling hours.  It was so deeply moving to greet and talk to hundreds of people:  

Dear friends from my youth (Paula, Jessica, Heather and Jess L, Rich, and Noelle... Joyce and her parents)

Our Art Museum family (like Tim F., Tania, Rafi, Kim and Rob, Elaine, Chuck, Meena, Chad, Antonia, Jan, Ruth, Travis, Stephen B., Tom G., Jim Welu...)

Art students who became friends (like Lindsay and Alex, Sally and Renee, Miriam, Jim, Kendall, Ryan, Keenan, Greg McKenna...)

Fellow artists who became friends (like Scott B., Brett and Syd, Scott N., Brian N., Brian G., Bob and Jen, Britt and his lovely wife, and Dan H...)

The kid's friends (like Mike, Dave H., Soojian, The Dominys, Melissa and Jeff, Andy and Becca,...)

So many people from Andy's life; (Tony and Heather, Mark C., Harah and Hago, Paul T., The Giards, The Borowys, Hank Stolz, Dick and Rose Taylor, The Mastermans, our Boys and Girls Club family like Frankie and Liz, Bill Wallace, Pete our mechanic... ) Our neighbors... (like Aaron, Alex and Jamie, KJ and Jess and the baby, Tony, Stacey, Greg and Gavin)

Our church family (Deacon Jay and Father Niccolls, our Coffee Shop Team Family, John B. and Steve, Kathy H., Carol and Bob, Annie and John, Bill and Kate, Andrea, John, Anna, Nicole and Will, The Walshes, The Ryans, Jim, Beth, Jimmy, Mike, Andrea and George, Cadence and Connor, Deb and Kevin H., Marina, Emily and Bee and Alejandro, Julie and Adam, Lisa and Nate and Mason, Alex and Karen, Pat and Dan... Sarah, Jim, Lucia, Patrick, Maria, and a special moment with James, (dear James who had a close friendship with Andy during his intensive chemo treatment, James who knew Andy's plight so well)...)

Even some of our nurses came to see us!  RNs Hannah, Tom, and Christi visited, all people who I've talked about here and cared for Andy during his darkest days.   

 

We were so overcome with appreciation for it all.  

And so many more I didn't name here, you were in no way forgotten.

Special thanks to our wonderful families.

 

THANK YOU THANK YOU THANK YOU

 

Before the Wake; "Flowers for Andy"

I had to order my wake and funeral dress, (couldn't bring myself to leave the house) and decided it would be something to wear once and never again.  Going through our wedding memories and the rest of my photos of him throughout our relationship for the slideshow and reception took a full day just to process emotionally.  I was overcome with guilt over so many pointless worries and arguments we had in the early days.  The kids will be showing me so many of their personal memories tomorrow, from days before I knew him.  This, I look forward to.

I also will wear one of his watches on the left wrist (as he wore it) and the vintage watch he gave me for Christmas on my right (as I wear it) as well as his Hellboy pin. 

Ordering casket flowers felt so uncomfortable as well, but I tried to feed in a happy memory of Andy to offset that.  Every spring Andy would give me $200 and say "Go get a ton of flowers for the front porch - whatever you think would look good.  Let's have it overflow with blooms."

 

 

Andy stopping to pet Riley the Shop Dog at the local flower farm.  May 2025

(He always stopped to pet a friendly dog.)

I had to go into Andy's studio the other day to access our tax files on his computer.  I had been avoiding going up there and realized I hadn't been back since sometime in early August, maybe even the end of July.  I used to pop up to the 3rd floor a few times a day, lay on his pink shag carpet and just talk.  He would stop whatever he was doing and chat with me, no matter how much time it took, he helped me work through anything until I was good.  I took up so much of his work time and he never complained.

It broke my heart to hear the echos of his voice in my head talking about how he wanted more than anything to finish his art projects and work on novels, a passion he had been harboring for many years.  "It's important to me, Veronica."

Our plan was for him to finish his comic commitments and begin just writing all day, enjoying the dog, morning coffee with me and future grandchildren.

When his computer started up, I got a snap shot of his last studio time before being hospitalized.  I got insight into his emails, which were always so kindly written and hid nothing from me which came as no surprise.  His browsing history and tabs were all toys, comics and weather reports.  He had butterscotch candies strewn about and an unfinished grape Powerade.

His messages showed so many loving and joking responses to friends and family.  It was crushing to see our texts include less of his responses as he became unable to type.

I think back to my last interaction with him while he was fully conscious, before the ICU.   

"I love you"

I'll be missing our quarterly tax filing deadline but who really cares.  It's hard to care about anything right now.

The wake is tomorrow and it will be a surreal experience to walk in the room to see Andy's casket for the first time.  We were glad the funeral director also showed us a back door we can escape through.  

None of us want it to get here. 

I have been dreading the funeral more than anything, specifically the burial.  I suspect there will be a fair amount of PTSD from that moment.  However, we will continue to cling to the love of friends and family to carry us through these gales.

I do look forward to hearing many wonderful stories and seeing many wonderful people tomorrow, as it will be the celebration of his rich and beautiful life that is at the center of this; the eye of the storm.

 

Neko Case "Andy"

 

 

Many thanks to:

Mike and Bridget,

Sally and Renee, Pat and Dan, Alex D.,

Ben, Tony, Mike, Patti and Tom, Stacey, Greg, Gavin and Hailey,

Jess and KJ, Donna, Sean, Bruce, and Ari, Paul T.,

Alexa and Joe and Audra,

 and thank you for reading

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

 

 

Andy watches Riley trot on by.  May 2025

 

 

Being one of the Left Behind

Andy and me in 2018 at "That's Entertainment" in Worcester. 

(We were promoting "Blackwood" written by Evan Dorkin.  I went to a signing of Evan and his wife Sarah's, only to end up working with them 10 years later... thanks to Andy.)

Andy had encouraged me to get a job there, and it helped me develop a love of comics and choose my future profession.  Look how handsome he is...

 

I don't think too much about what I'm going to say when I sit down to write these posts.  Maybe that's the beauty of this process for me as opposed to artwork, where I am always sketching, erasing, sketching and trying to figure out where the piece is going.  Here, it's just whatever has been on my mind.

In the days following Andy's death we've all been dealing with it in our own ways.  Many times I will go into a state of catatonia, then break into tears.  I look over to where he should be sitting and talk to him.

Going through his side of the closet was hard.  It was important to choose the clothes he'll be buried in and we knew it should be white linen.  White linen for two reasons; 

1. He believed strongly that we are purified when we go to The Other Side 

2. He wore it a lot and looks amazing in it.  It's kind of his thing.

I can't bring myself to leave the house unless it's for an absolutely critical appointment such as choosing our burial plots or going to the funeral home.  It was hard for us but we all chose things that we knew should go with him:  Austin's dog collar, his reading glasses (the blue ones because they brought out his gorgeous blue eyes), cards from all of us, family photos, his favorite watch, his favorite drawing pens, his rosary, some small toys he loved and a love note from me that he kept in his drawer.

We were heartened to know the funeral director not only knew Andy but graduated high school with him and even served on the school newspaper and yearbook club with him.  Andy knew how to take and develop photos, so his job when he was a teen was working as a photography assistant as well as drawing cartoons.

 

Bruce did a great job choosing the beautiful background of Andy's own studio for his obituary page.

We loved hearing stories about him that we hadn't heard before.

However, when home alone... The Daze settles in again.

I don't know what day it is, what I should be doing next, and often find myself pacing in circles in the living room.  Going through the financial side of things, the logistics, is overwhelming.  The weight of his loss is so gigantic, it's an earthquake of a magnitude that can't be determined.

I noticed the bruise on my leg has healed.  The one that I got from jumping out of the recliner to help him.  I was sad to see it gone; a symbol that enough time had passed where my assistance was no longer needed.  It became my reason to live for the past month.  As the situation became more critical I clung to things like "well at least he's still in the hospital, he'll get through this..."  Now I am dreading the funeral.  For now, he is still at the funeral home, still here with us in some way.  I don't think I'll be able to witness him being buried, it'll be far too heart breaking.

He is my best friend, support system, an unending source of affection and human connection, my protector.  What now?  I'm not a whole person anymore.

I won't lie, I had thought a few times about ways to go with him.  (***Before you worry, I promise you I won't do anything.  Andy made me promise him that this won't destroy me and that promise will be upheld.***)

However, the thought of being in this depression for an indefinite period of time, not knowing when it will lift was often times too much to bear.  How can one possibly get through it.

I miss everything about our routine, which was normal only two months ago.  I miss the clinking of his coffee mugs as he got one out of the cupboard.  I miss grinding the beans fresh for him while he was in the shower, (a favor for which I was always thanked.)  I miss the way he'd overshoot the laundry basket when he threw his socks in from the bathroom.  I miss going out with him on scenic drives, the weight and heat of his body near me at night.  I loved our routine of watching "The IT Crowd" or "Black Books" or the Jeremy Brett Sherlock Holmes series on his iPad before going to sleep.  I don't want to touch anything, and keep his chair pulled out, as he did.

I desperately look for anything in the closet that still smells like him, and wear his clothes.  I wear his wedding ring, speak in present and plural tenses.

"Give the kids our love"  ... "He loves you...." etc.

When I pray at night, it's talking to Andy in The Next Place.

It was a bit surreal picking my own burial place, but comforting to know it's where he wanted to be, a place special to the both of us.  We used to walk there in the fall and took our drawing classes to sketch the beautiful architecture on the grounds.

So we'll be next to each other forever, under a gorgeous European Beach Tree, which will only grow more beautiful as the fall comes in.  As it gets closer to our 16th wedding anniversary.

I'm not sure how to survive this, but I will, because I promised. 

I will continue to write here about the grief process in the event it can be of use to anyone.  Hopefully it can.  Much love to anyone reading.

 

Many thanks to:

The boys & their partners,

Birgit and Luis, Lance, Steve Altes,

Annie, Patti and Tom, David and Kathleen, Donna, Bruce,

Julie, Lisa, Nate and Mason, Kathy H., Missy and Rick, 

Jan, Elaine, Alison, Lindsay, Derek,

Deedee and Billee

and so many more.

 

THANK YOU THANK YOU THANK YOU

 

we love you

 

 

The day he had to leave us

 

I recently came across this beautiful Indigo Girls song, "ANDY" 

It's one of the greatest songs I've ever heard.

Our family is processing this devastation as best we can.  It is without a doubt the hardest time of all our lives.  

I am wrestling with writing about witnessing Andy's death.  I use this blog as a way of processing my own thoughts and emotions, as a way of preserving this arc of our lives (without knowing where it was going) and often the act of writing itself helps me to remember.

One of the things Andy would tell me was "You can't remember anything right now because you're panicking.  Once that passes you'll remember everything."

I don't know if I want to remember that day, Saturday, September 5th, 2026.  

The day my husband died.  The day the boys lost their dad.  The day Billee lost her first son.

The hospital called me at about 5:45am to say I should come because his cardiac function was  decreasing.  Despite being on the medication for his pneumonia and viremia, the cancer cells were too aggressive, and his kidneys and heart were simply too overworked.

I screamed full-blast the entire drive from our house to the hospital.  I punched the steering wheel.  I ran through wet, freshly cut grass from the parking lot (valet closed, it was too early) and got a cramp hurrying to the entrance.

I notified the kids and they followed quickly after.  I spent some time alone with Andy, watching him breathing, telling him I loved him.  I spoke some private words, and placed my face in his palm, his arms and wrists wrapped in tape, IVs, lines and wires, his finger tips purple from glucose monitoring.

His mother and sister joined us and the doctors came in to explain the situation.  He is being kept alive by life support but his body is not responding to the medications; the ALCL has progressed too far throughout his system.  A nurse placed the "Privacy Please: a family is saying goodbye to a loved one" over his door.  I called his brother.

We thought at any moment he'd open his eyes, wake up and say he was fine.

Gradually with our permission (which made us all sick to have to do) they began shutting down the life support machines and extubated him.

We held him, kissed his forehead and hands and told him how much we love him.

He breathed slowly and then one more time and stopped.

All of us broke down, begging him not to go, please come back, darling.

We each took private time to talk to him.  Andy was adamant that we stay with him for at least 20 minutes after because "the soul is still in there, and I don't want to be alone".

So we stayed for an hour and a half.

We met with beautiful Dr. Bindal, who I adore, and she gave me a genuine, heartfelt, strong hug. 

"Thank you doctor, I know you tried, thank you for trying so hard for him..."  which she did.  She exhausted every avenue and therapy for us.  She worked hard for Andy from the second she took over his case.  We believe every doctor who worked with him did everything they could to help.

At the end, when I thought I was ready to accept this, started walking to the elevators, then suddenly was overcome with anguish, ran back to the ICU and flew into his room;

"Andy, my darling, I miss you, I love you sweetheart..." and kissed him.

But he had changed by that point, he wasn't the same, and the experience shocked me.  

 

Looking back on it, it's okay, because it revealed that it's not about the body now.  

 

It's about his soul - his soul goes on to the next place.  

His soul gets to be a part of something bigger, more majestic, more wonderful in every way.  

He can see everything now, the whole universe.  He can be outside of time itself.  He can exist forever in perfect love, which is where he deserves to be, if we can't have him here.

Our beloved Andy

A son, brother, husband, father, teacher, mentor, artist, storyteller, antiquarian, fighter, friend

12/27/1965 - 9/5/2026

 

Taken the day before our wedding, 10.9.2010

It's not really goodbye

 

Andy passed away peacefully on the morning of Saturday, September 5th, 2026.

Our hearts are broken.

 

A piece of us is gone, but will go with him into the next place, which I know will be more beautiful and more glorious than anything we can conceive of here on Earth.

 

Thank you everyone for your prayers and support for our family as we went through this pain.

Andy was an extraordinary person, friend, teacher, husband and father. 

 

I will never again be loved as he loved me.  

I will never again love anyone as I have loved, and continue to love him.

 

Thank you everyone, please love each other fully and completely.  

 

Every day.

 

 

Andy with me and my sisters and brother-in-law, 2017

 

 

 

Andy holding his little brother, Al, 1979 

 

 

 

Matt and Krystine's wedding, 2021

ICU Day 4 & 5 : The Way We Get By

Andy's wedding ring would normally be on the ring finger...

 

The Intensive Care Unit is quite a different animal from our spacious room on the Oncology floor.  Rooms are cramped and strictly utility-based, bathrooms are for patients only (when they are not bedridden), there are many new machines, wires, taps and lines everywhere so a nurse can triage a problem in a moment's notice.  Families must stay in the waiting room and call ahead to check in, and only enter two at a time.  There are many medical carts in the low and short halls filled with supplies and the nurses station is central so they can see and hear any emergency. I can not sleep near him like I did previously.

One of my favorite things that happened before he was sent to the ICU was he asked me to sleep on his bed for the first time.  He had lost most of his ability to speak, I think it was due to the viral mono in his throat, so he gestured for us to sleep back to back.  It only lasted a short time before he was up again from discomfort in his stomach, but I know the feeling of us acting like normal, it was nice to feeling his breathing and the warmth.

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

Anyone who has been with someone in the ICU on a breathing and feeding tube can attest, it's no party.  The experience is frightening to behold and much more frightening for the patient when they begin to come out of sedation.  With continuous kidney dialysis (gentler on the system than the regular, 4-hour kind people can get as out-patients) he is currently on the maximum amount of life-support.

I met with some of our family, the Resident ICU Doctor and the Palliative Care Nurse Practitioner to have a serious discussion about the possibility of Andy's heart stopping while he is in the ICU.  At the start of this, Andy was 1000% all-in; do whatever we have to do to fight these things.  The medical teams have warned us that if his heart stops and they initiate resuscitation, his condition is poor enough that it would do more harm and cause more pain than good.  It would likely cause brain damage and if they had to break a rib, it would likely not heal and be excruciating for him.  

We know that Andy's sharp personality, his wit, his humor, his mind - are too important to damage.  He'd rather be himself and unable to walk, than be saved but lose his brain function.  

So we had to make the difficult decision that in the event his heart stops, we must allow him to go peacefully.

I had spent the night crying the entire evening, until the sky started to turn light blue and the birds started.  I slept a bit in the morning, missing the sound of the new year school buses, and headed to the hospital.

I had an awful nightmare about him.  In the dream, my phone rang and a male nurse on the other end said:

"Veronica?  Andy is here, ... he wants to talk to you (go ahead, Andy,...)"

But instead of Andy talking, it was his pained groans and gurgling from a wet breathing tube.

It was terrifying. 

 

I needed to talk to someone and get out of this spiral.  What helped me, like Andy, was planning.

 

I had good conversations with friends who have been on their own spousal cancer journeys, the doctors, and the Palliative care nurses who helped me get through the darkness.

• If my beloved husband passes away, how will I get through this?  
• How will our family?  
• How long will the sadness last?  
• How will I manage all these new challenges by myself?  
• How to deal with recurring depression?

Friends could offer me sound advice:  If this goes badly like they warned:

• For about 400 days, you will be extraordinarily sad.  With kindness, patience with yourself and your grief process, leaning on people you trust, you can claw out of that darkness like your spouse would want you to.
• You will not forget the good times you had.  You will however, remember the dark times.  Do not dwell on regret or past arguments.  The time to care about that is over.
  
• Imagine you are not alone in your house.  He is still here, talk to him, look at his pictures, who cares what people think of that. 
• Do not dwell on the loss.  Focus on the love.  Try to enter into a state of grace.
  

Andy said to me many times, if I went first he would talk to me even if I wasn't around, he would keep my chair at the table open, he'd act like I'm still around.  No matter what happens, he always will be.

He is a part of us.

Currently he is stable in the ICU, his infections are being treated with the right medications, and his natural immune system is beginning to recover slowly from the chemo.  We never give up hope and we know he can pull through this difficult hospitalization.

I'm glad some more relatives will be in town this weekend and the boys will hopefully get to spend some Dad-time with Andy.

Many thanks to:

Jan, Mike S., Kim, Stephen 

& all our friends for their support

HAPPY BIRTHDAY, MATT!

 

 

ICU Day 2 & 3 : "Don't give up hope"

 

I think back to how our journey has changed over 60 days, starting from his initial doctor appointment on June 19 and cancer diagnosis on June 22.  We started in heat waves and now the leaves are changing.  

It feels like distinct arcs, as his story unfolds we move to another land, another part of the map.  

At first he was home, and we were in-and-out of the hospital for short stays and commuting to the clinic for labs.  He was his normal self, then, making jokes like "How many bed sheets do I have to tie together to lower myself from the 8th floor?" and cracking wise with the staff, ordering food for me on his phone and texting with me constantly as per usual.

I felt this would definitely get tough in the future, but had no comprehension at all of exactly how brutal it would be. 

Small shifts started as his hospitalizations became more frequent and intensive.

I noticed on my phone there were less and less calls from him.  His name stopped appearing on the Dunkin' Donuts "Order Progress" board.  No longer did text messages say "Read".

I missed seeing his picture appear on my cell.  Missed hearing the sound of his clear, kind voice.  I hated when I would call and he stopped picking up.

His painkiller regimen increased, he became more restless and uncomfortable in the night, slept more during the day, became less able to have conversations, and gradually lost the ability to stand and speak.

When he looked at me his eyes would sometimes look through me, then he'd come back.  One time as I was helping him to balance he looked at my gold cross and murmured "That's a pretty necklace."

"I think my parents gave this to me when I was baptized."

"Oh. It's nice."

Even when things got bad, he would still order extra eggs and bacon with his breakfast just to give to me, like he always does.  "Veronica, have some."  Sometimes when helping him steady himself, he'd take a brief second to just hug me.  It was so good to feel his arm around me again.

The bronchoscopy could not be performed due to his bleeding risk, and the Infectious Disease team took a different but sub-optimal sample to the lab.  

However, a doctor came in and told me it was more important that we initiate kidney dialysis that evening.  It was my understanding the pneumonia was the most pressing thing, but she said this took precedence.  So it was done, and I signed another form for him as his proxy.

At first our time lines were;

"Here's the plan for the next four to five months."

then; "Here's the new goal for the next few weeks."

"We should address this soon."

"We need to do this procedure in the next 24-48 hours"

It's been hard for our family, but we are keeping it together as best we can.  I am eternally grateful for my step-sons' excellent and loving support, as well as my parents and in-laws, who never fail to come through.  I'm also happy to be back with our dog, whose happy demeanor helps fend off demons in the night.

Many thanks to Jess, who found me in the cafeteria after her shift and offered such beautiful advice from her own caregiving journey.

We are hoping and praying that he doesn't have to be on all those tubes much longer, that his counts will improve and he can eventually come home.  I'm glad his dialysis went well and that it will help his kidney function.

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

Dr. Bindal stopped me on her way out to give me a lot of comfort and impart her wisdom;

"So I want you to really hear what I am saying; there is nothing you could have done differently to prevent where he is now.  The Myelo Fibrosis and the T-cell Lymphoma... these things are no joke.  Even if you started treating them earlier we might be exactly where we are right now.  The important thing though, is that you don't give up hope.  

"I'm not going to mix words with you, okay, he is in a very precarious state and I am very worried about him.  How the next couple weeks go will be critical, he is not out of the woods.  However - do not give up hope.  If I felt it was over, I would actually tell you that.  Don't give up hope." 

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

Many thanks to:

Our friends & families as always

Dr. Poorva Bindal

RN Abbie, Dr. Yan, RN Kathy, NP Lisa, Dr. Gillian,

and the nice ladies at reception,

The Staff at the ICU

The wonderful people who continue to donate to our GoFundMe

 

THANK YOU - THANK YOU - THANK YOU

 

ICU Day 1: Knock 'em down

 

a grey and rainy day

After fully recovering from being run down, I went back to the room as refreshed as one can be, eager to do what I can do and just to have a few more hours with him, no matter what state he is in.

Sadly, the subsequent night was completely sleepless.  When I returned I found he now had an overnight PCA stay with him, which was a great help since he is so inhibited by the painkillers and anti-anxiety medications that he is in serious danger of falling.  Over the past weeks, Andy's nighttime restlessness has gradually increased with frequency and intensity.  Finally, it culminated in trying to get up every 20 minutes from 10pm until 7am.  Then at 7:15am the doctor visits began and the regular Monday commenced once again.

However, his stomach pain and organ swelling had also increased, so each time he engaged his core to get up and out of bed he was in visible distress.  His exhalations were growing into loud moans.  The first time this happened last month and the nature of it was so frightening I started crying.  It was a sign his fungal pneumonia and Epstein Barr viremia as worsening, that his lungs were not doing well, and possibly his heart, too.

Wonderful Hannah who has been helping Andy from the beginning.

 

In two months, Andy's medical chart app has gone from saying;

 "Welcome to YOUR HOSPITAL STAY; you are being TREATED FOR: 4 issues"

to:

"Welcome to YOUR HOSPITAL STAY; you are being TREATED FOR: 20 issues"

After 36 hours of no sleep, at 6pm I left Andy in the capable hands of his night nurse and PCA. He was unable to speak but could smile a bit and we squeezed hands. I went home to sleep. 

However, that wouldn't be the case.

At 10pm I got a call from a nurse on the floor that he had a breathing episode, hypoxemia, and they are attempting a CPAP mask to help force his lungs to take air.  It broke my heart to watch him try to deal with it as long as he could, then try to take it off to get a break.  They could rush over and say, "Andy, buddy, you can't take that off, okay..."  I know how hard that was for him.

His room was filled with 12 or 15 people, triaging, bustling, giving and following orders, troubleshooting problems, then suddenly it got very quiet.

I took his hand and everybody watched the monitor and listened to the beeps.

His breathing became more laborious and spaced out.  More valleys appeared than peaks.

"Andy?  Darling..."  

His hand started to relax in my palm and my vision started blurring with tears and the Resident Doctor said it was time for me to make the decision as his health care proxy.  Are we putting in a breathing and feeding tube and going to the ICU?  Are we going to keep him going only to pummel him again in 3 or 4 more weeks with more chemo?  Or is he leaving us right here, right now?

What's the plan?

I know what Andy's plan is - we talked about it at the start of this.  Andy's plan is that he fights with everything he has 100% of the time and it doesn't matter what the odds are.  He fights.

So I left the room while the professionals did what they had to do to save his life.

Then, at 2am I took three trips to our car, lugging all we had packed into his room over the month and drove home in tears.

Living here at the hospital for almost 30 days has given me a bit of a surface level look into medicine, and I'm glad in a way to have seen so many things happening in a variety of places: The ER, the Bone Marrow Transplant Unit, the Infectious Disease Units, the ICU, the Triage centers.  It's been an education.

 

It was hard for me to leave the floor we'd lived on for a month and grown to know many people there, to go into the new floor which seemed darker, a bit more run down and filled with strangers.

It was hard seeing him in the ICU, so many tubes and new machines all over.  When he would momentarily wake up and want to remove them, his wrists restrained to prevent critical injury, it was very difficult to take in.  We want more than anything to go home, go back to our lives just a few months ago.

The silver lining in this is that they were able to get an essential kidney dialysis done.  I felt a sense of hope again. 

After spending many hours in panic attacks, totally despondent, losing my will to live, at some point I have to get it together and adopt Andy's mindset:

"Veronica, we just have to set 'em up and knock 'em down."

You know, Andy, you're right.  

What's the problem now?  Issue X of 20.  Ok, what's causing it and how do we fix it?  

We set 'em up, and we knock 'em down.  One issue at a time.

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

 

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

Many thanks to:

Mom & Dad

RN Kayla, PCA Deb, RN Hannah, RN Michele

RN Abbie, RN Kelly, sweet Gloria

The Intubation team, The ICU team, the Residents, night nurses, PCAs & staff.

Dr. Poorva Bindal for her expertise, compassion & excellent advice

 

THANK YOU THANK YOU THANK YOU

 

Also, thank you to Dr. Richard Stone, at Dana Farber for taking my call and the nice conversation.

My dad went to high school with him, and he was valedictorian of that year.  He also had nice things to say about my dad, who indeed, is a nice guy as well.  I loved Stone's choice of yearbook quote: