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.

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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:

True Love Will Find You In the End

I am relieved to say I have been cleared by the doctors to return to the hospital, I passed my flu and Covid tests and have had no symptoms for 36 hours.  

While I was home, our friends from our days at the Art Museum came by, Birgit and Luis.  They brought gifts from Germany, vitamin C tablets (which I know worked for me instantaneously) and warm, healing hugs.

Later that evening, my lovely Aunt, Uncle and cousin came by to give me home-made Chinese congee and a special ginger water to give to Andy.  They also brought lo mein, dumplings and pork rice.  (we just love Priscilla's food...)  Dear Faith also Door Dashed me the flu and Covid test kit that I needed as well.  Our family is small and very spread-out, but we are there for each other.  We are blessed beyond words with the kindness and generosity friends and family have shown us.

The doctors called each day to update me on his condition and the boys do as well.  I am sad to hear they must return to the Amphotericin anti-fungal medication to treat the infection in his lungs.  They must continue to treat what they think it is while they can not biopsy.  I am extremely worried about this since Amphotericin is harsh on the kidneys and they stopped it previously to let his organs recover.  It is a lime green liquid IV drip not unlike flat Mountain Dew.

However, the oncologist told me they are running out of options and his lungs continue to see nodules increase, so they must up his diuretics again to get the liquid out and help his breathing.  I wish there was a way they could get his platelets as high as possible before they fall again, and get the biopsy in with the most capable person.  (The number has to be 20 for it to be safe, but Andy's will fall even after an infusion from 19 to 10 to 8.)  But I am not a medical professional, and I can only wring my hands and hope this gamble works while another one of his organs gets drop-kicked by chemicals.

We have not been able to get to our second opinion at Dana Farber, because he keeps being hospitalized and they can only take him on as a patient in-person.  I'm not sure what else they would do, other than have an arsenal of clinical trials to look through.  These decisions have to move quickly however, and I wish somehow Dana Farber could be consulted remotely on any possible new anti-fungal treatment they may have that our doctors don't know about.  Maybe they do, I wish I knew more of the inner-workings.

I am anxious to return to the front lines with Andy.  We are grateful the boys have been there to switch off and take care of the dog for us.  Andy is a genuine tough guy, he is the one taking all this pain, and if they told me I'd have to give up my life to save him, I would do it.  No question.  

 

If you would, please pray for him - that the anti-fungal medication they put him on works, even though it is a tough medication on the body.

 

"True Love Will Find You In The End"

Shakey Graves x Jess Williamson cover

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Many thanks to:

Our families, as always

Alex and Karen, Annie and John, Patti and Dave,

Sarah, Jim and James for giving advice,

Everyone from our church family

Philip and Lacey 

Everyone who has donated to the GoFundMe

 

Thank you to everyone who has shared a story;

this is a club no one wants to be a part of, but there are so many beautiful people in it.

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"And it breaks her heart"

In the interest of our family's privacy I have left out many of the graphic details of Andy's ordeal, and feel it's appropriate to do so, although I had started a private diary with these things to get them out of my head.  Eventually I couldn't continue with that, because I realized the act of writing began to commit them to memory, and I'd rather not.  I'm sure other people who have experienced a loved one's suffering know there are many details that only the nurses and close family will witness.

It's very difficult for me to be away from him.  I keep thinking about him in that room, the discomfort he is in, if he needs me even to just hold his hand.  Joe and Adam are switching off being with him, which is a great help, but I still want to be near my husband.   

The last 16 years have been spent living and working together from home.  What I wouldn't give to pop up to his attic-studio and hear him say "Hey, sweetie, what's up?"

 

 

My sister came by exactly when I needed her most.

 

I am home recovering, and my sweet sister made me soup from scratch and her own blend of peach and green tea.  It helped a lot.  We watched her favorite episodes of "It's Always Sunny in Philadelphia" and "King of the Hill", two shows I've never seen, and had a nice time together.

She is a new mom, and a good one, too, her baby turned one just two weeks ago, and she showed me pictures of their son playing with the car set Andy sent them.  

 

Callum playing with the toy Andy sent him for his first birthday.  

Andy started buying him toys before he was born, and has stored them to parcel out at different birthdays.  In my studio now is a half-complete set of Hot Wheels and Matchbox cars in a travel container to give to him when Callum turns 4.

Sitting on our stairs are 4 boxes of army men for him.  An extra box for Andy to keep here.

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Andy also sent my cousin's baby a flying helicopter, which we were happy to find out is his favorite toy.  Andy bought one for himself, of course, because he loves toys and is just a kid at heart.  In fact, our house is covered in toys, (many of them have to be moved if you want to take out a book) and Andy being a voracious reader often has stacks of books around that he has started.

I used to be on his case all the time about the huge piles of books that covered all the flat surfaces, how he would make a new office out of every place he sat, how there were always a thousand tiny toys everywhere. 

None of that bothers me now.  It's all reminders of his presence.  He existed here just two weeks ago, these are his things. 

I've started sleeping on his side of the bed, started wearing his shirts, started using his mugs.  

It's so surreal.  Just two weeks ago he was sitting here, drawing.   Just two months ago we were out on our deck, drinking coffee like a typical morning.  Everything has changed. 

 

 

Andy has been my friend since I was 19.  We've been a pair since I was 20.  I can't think of myself as a complete person without him.  Every one of my purses and desk drawers contains a love note he has written me, specially kept around in case I need a boost.  

He encouraged me to go to the School of Visual Arts, and become a full-time professional illustrator.  He encourages me to value myself, and protected me from being taken advantage of with bad contracts.  When I act like I can't do something, he is shocked I could possibly feel that way.  He has total confidence in me all the time.  

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We've spent almost every day together for the past 22 years. 

I just don't think that's enough.

Our wedding day

 

 Andy and I love this song, Audra does too.  I don't know if I can listen to it without breaking down.

Maybe someday. 

 

Many thanks to:

Our families, as always

 

Where we are now

We had a very tough night.  Once again Andy was dealt a round of Lasix (which I know they have to do this because of the fluid around his lungs and in legs) but we looked at each other with exhausted glances.  Sure enough, we were up every 40 minutes from 10pm to 5am.  It hits him faster than he can hit the nurse call button.  He is also on Oxycodone and Atavan for his stomach and biopsy site pain, so he is very unsteady in the night.  Finally, at 5:30am, a solution was found and Andy and I were able to sleep from about 6 until 8am.

Then, the oncologist came in this morning to explain that Andy's lungs are showing traces of viral infection, Epstein-Barr.

The anti-fungal they had given him that did kidney damage was in fact needed to kill other things, but a piece they couldn't get was this.  So he is being treated for both fungal and viral infections, and they have to keep trying things to see what works because they can't get in there to take a biopsy.

It's just too much.  His EB level was elevated back in July, before his first chemo treatment was administered.  I know this from looking at his chart but some where back in my mind I remember someone saying it was nothing to worry about... I just can't remember, so much changes so quickly.  However, even though Andy never had mono growing up, Epstein Barr is one of the most common viruses on the planet, and he could've gotten it anywhere at anytime.  The chemo drugs he was given also can reactivate it as it lay dormant in his system.  But still, it's just too much, my heart doesn't know how to handle it.

Andy as always is so good, so on it.  Even exhausted, sore, hooked up to 4 machines, he knows and understands all the medical talk thrown at him, better than me.  He, as always, never ever gives up.

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Wonderful RN Pam who has been excellent in every way.

As has RN Kelly and Catherine and Taylor ... love all of them so so much.

So many incredible nurses are there for us in the clutch. 

Many thanks to the people who reached out with their own stories and care-giving journeys.  I don't blame the doctors, many of them are in fact excellent and compassionate people who we enjoy working with very much, such as the brilliant Dr. Mariano and Dr. Pearson, and many others.  I know everybody is doing as best they can, and we are just feeling very run down.

And then, again - like magic, as I'm walking around the parking garage having a panic attack, crying and desperately trying to ping my car alarm, friends from church ask if I need a ride, rescue me and get me through it.

My lovely sister also drove 14 hours to see if we needed anything, and brought me medicine.  I was in the elevators entering into a panic attack, when she texted me:

 "I'm here, sorry for being unannounced."  :) 

I am devastated to find out I am not feeling well, which means I can not go back to the hospital for the time being.  But luckily Audra is here to take care of me.

I am praying every night he will be ok and in less pain, and that I can see him again soon.

Many thanks to:

M & K, J & K, A & C,

RN Pam, RN Taylor, RN Kelly, PCA Lorena,

Dr. McDermott, Sandy, Gloria,

All the wonderful Nurses & PCAs who do so much for us 24 hours a day,

David and Kathleen, Audra, and the nice gentleman in the elevator - Bruce,

(who called me m'am and said he'd pray for Andy in this exchange:)

"Oh you're going top? What's up there?"

"My husband."

 "Ohh... I'm so sorry. What's his name?  I'll say a prayer for him."

 

THANK YOU  THANK YOU  THANK YOU

 

The Breaking Point

 

I'm not sure where to begin with this post; so much has happened and we just continue to sink lower and lower.  Andy experienced his 6th day of 24 hour painful diarrhea, getting up with great pain every time, shaking and trembling with exhaustion.  He is so thin he is officially diagnosed as Malnourished.

Every time we are finally able to get him comfortable again with a puzzle of pillow and IV line placement, we will do it all over again in about 45 minutes.  If not, someone will come in to take vitals.

The doctors have told us his condition is serious and making it out of these two cancers is a rocky road.  He is unable to accept a bone marrow transplant at this time, but we hope and pray he can get to that point in the future.

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I'm realizing there is no linear progression with the stages of grief.  I thought they began with Denial, then some order in between of Bargaining, Anger, Depression and finally (supposedly) Acceptance.

Currently my pathway with these things has been a very long stretch of Bargaining for many months ("If I was a better person, thought better thoughts, did nicer things, this wouldn't be happening to him." et cetera et cetera.)  I crossed over into Anger yesterday, and blew up in Aaron Sorkin-fashion to a room of doctors and family.

 

After two months, I finally lost my mind.

Andy has not been able to get the bronchoscopy procedure done to find out what is in his lungs.  His risk of bleeding is too serious, his platelet counts are too low.  So they asked him to cough into a cup, but he was unable to produce a good enough specimen.

Wave upon wave of "teams" and specialists came in to give us one gut punch after another.

Nephrology: "Hi... how are you doing today...  So the broad-spectrum anti fungal we put you on to catch this thing has done some kidney damage, and the contrast we gave you for imaging has also done damage to your kidneys."

N: "Do you have any questions for me?"

Me: "Yes, so has the chemo helped with the lymph nodes that you said were hurting his kidneys to begin with?  Are you able to see if there has been a benefit to that?" 

N: "I can't prognosticate on that."

Me: "Do you know why his oncologist is holding off on the Prednisodne?" 

N: "I can't answer that."

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Infectious Disease: "Hi... how are you doing today.... so the kidney issues we are seeing are looking like they have been caused by some medications... okay... we are going to scale back and change course... the damage should be reversible..."

ID: "Do you have any questions for me?"

Me: "Yes, so has that anti-fungal that you gave him show any benefit right now to the possible pneumonia?" 

ID: "I can't answer that."

 

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The Palliative Care woman came in at the same time as the Resident Doctor from the previous morning. His son and mother are also in the room.  With her was another doctor I hadn't met yet and whose only exposure to me will be a gigantic tirade.

The teams announced themselves to each other, careful to mention titles, their hospital hierarchy.  They seem very proud to demonstrate their status to the room.  After the 374th question to Andy, where his condition is so poor he can barely sit up, he looks to me with his large blue eyes to help answer. 

 

Palliative Care: "Hi... how are you doing today.... Who do you have here with you... Oh you're wife I see.. Have you met with anyone from our team before?"

Me: "Yes, we met with Dr. S, the psychiatrist."

 PC: "Oh... Dr. S is a psychOLOGIST.... ok... not a psychIATRIST..."

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Resident (student) Doctor: "Hi... how are you doing today... "

New Doctor: "Hi... how are you doing today..."

The New Doctor proceeds to tell us problem after problem, hurdles, complications. Finally I hit my breaking point.  

What benefit have we seen from the first chemo treatment?  Are we switching him from Pacritnib to Momelotnib because Momelotnib has a better track record when used in conjunction with chemo or because Pacritnib is formulated for people with Thrombocytopenia, which he has -- Can anyone actually answer my questions?  Can they manage to NOT do it in a condescending way?

My husband has been given a devil's bargain.  Do nothing and maybe you'll live 3-4 more years, OR, you can take allllll this poison and possibly be in unnecessary excruciating pain and possibly die early - before the birth of a long-awaited first grandson.

Yeah, there's a lot of pain here and he doesn't deserve it.

And shaking, I grabbed my tea and stormed out, certain the nurses heard the whole thing.  I don't regret what I said, but worried that I embarrassed Andy.  That would be worse.

Adam found me in the waiting room by the vending machines and gave me a pep talk and a great deal of comfort. 

 I was happy in the night to run into Paula, who also have me a big hug before running back down to her duties around the ICU.

I don't blame the doctors and nurses, medicine, I don't actually know where to even place blame.  We are just so very tired.  Anybody who gets dealt such an evil genetic hand doesn't deserve it.  Many people have suffered and are suffering who don't deserve it.

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In the evening, Andy, who again is weak, arms and legs look like they were beaten with a bat, steadied himself on me in the darkness and told me this:

 

Andy: "Oh sweetie... don't worry.  God came to me in a dream.  Just now.

The three of us were walking and His arms were around us.

He said it's going to be alright.  Okay?"

 

Me: "Okay."

Many thanks to:

RN Pam, Francoise, Paula, Sandy, and Gloria

Bill and Kate, Mike, Jim & Jimmy, Jessica L., Jessica R.,

and all our friends and family who sent us prayers and good messages this week

THANK YOU 

 

 

 Sweet Paula runs back down to the ICU after giving me a hug

 

Dazed and Abused

Thank you to everyone who prayed for Andy's bronchoscopy.

They will put it off until tomorrow so that his blood counts can be in a better place and hopefully calm down some other difficulties he is dealing with.

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We are now past the second month of being on this cancer journey since Andy's diagnosis at the end of June.  The first month was nothing compared to the struggles we find ourselves in now.  I hesitate to even use the word "journey" because it is more like an arduous trek, a slog, an ordeal...

I am beginning to feel like I am in a daze.  I don't know what day it is, how long we've been here, if there was something I forgot to do... what papers did the insurance company need again?  What did the nephrology team say?

When he is finally able to nap, sometimes I wander the campus, but not for long because he may need help or have a visit from doctors.

 

Empty areas on a quiet Sunday night, before the classes are in session again.

 

 

The new school year has started and the medical students are back now, and I realize our entire summer vacation has been given over to cancer.  

Which I have no feeling about either way, The Daze is beginning to shut down opinion. 

I even locked my keys in my car for the first time in over a decade.  Luckily my friends were there to save the day with a valid AAA membership and coffee.

I am noticing a well-formed bruise on my leg where I jump out of the recliner to help Andy in the middle of the night, and this spot will hit the wood on the arm rest.  Friendly PCAs offer me a stretcher but it's easier to get out of the chair quickly.  I don't do any of this out of guilt, he'd do it for me.

But no matter what I go through, he has it worse.

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The difficulties Andy suffers are extremely painful to witness.  Yesterday he had a bout of vomiting, unable to keep even a bite of melon down.  It is often hard for him to get comfortable, he is unable to get in and out of bed without great strain on his abdomen and his lymph node biopsy site still hurts a great deal even though it was done two weeks ago.  He is prone to migraines, trouble breathing, nose bleeds, nausea, digestive issues and joint pain along with swelling in his legs and feet.  He has severe purple bruises on his arms where he has been stuck, even from many days previous.

It's cruel and unusual what is happening to him, and sometimes I can't process it.

At 3am, in preparation for his bronchoscopy he was give an IV infusion of supportive platelets, which is also given with fluids.  Because his kidneys are causing him to retain fluid, he had another strong round of Lasix, which meant more in-and-out of bed all night.

When he is finally back in bed and comfortable, it's now Monday, which means the quieter weekend time is over, and a new Resident (student) Doctor will announce herself brightly and loudly at 8:15am.

"MR. FISH?  HELLOOOO, I'm DOCTOR _blah blah_ I'm the RESIDENT here today OKAAAAY... how ARE YOU my FRIEND?? .... I DON'T BELIEVE we've MET YET... do you KNOW WHY YOU'RE HERE TODAY?  I hear you AREN'T FEELING SO GOOD...."

My husband, who has been put through a poison meat grinder and has no voice, an infection in his lungs and a cancer in each of his immune systems... wincing at the light in his face still manages a polite greeting.

We are really missing Dr. Rebekah at this point, who was on previously, had an easy going disposition and we enjoyed working with her very much.

Thank God for Dr. Pearson, who is the Hematology/Oncology Fellow who oversaw the big plan for Andy, told us she has seen patients with more complications than him and while I am sad for those particular people, glad that he is not the worst case she's taken on.

She will be off now, and we will go into the hands of a new Hema/Onc Fellow for a while.  We will miss her.

I am happy to know my dear friend Paula is working the overnight shift, so I will try to connect with her at some point.

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Many thanks to:

Jim R, Andy S., Stephen B., Kim N., Liz W., Andrea,

RN Kelly, Riley and her sweet dad with the Hospital At Home team,

The lovely Night Nurse whose name I didn't catch but helped us out in a 4am jam,

my wonderful friends who helped get my locked keys out of my car / talk me down,

wonderful former student Alex B. and fellow artist Scott Nelson for the kind words.

Dr. Rebekah E., Dr. Laurie Pearson, Dr. Cerny

 THANK YOU   THANK YOU   THANK YOU

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 A lonely walk at dusk to get some air.  

I can see Andy's room from here.  The shades are drawn.

The Good, the Bad and the Lucky

We are gearing up for a very touch-and-go week.  We'd like to ask for special prayers as Andy is getting a risky procedure done to find out what infection is in his lungs.   

The team needs to know exactly what type of infection they are dealing with and can't do it without an invasive procedure.  They can not give him a supportive infusion of platelets because he is taking on too much fluid and the platelets come with more fluids to drain.  Because of bleeding risks, they will assess if it should be done Monday or held until Tuesday.  He will be put under for this, and on a breathing tube. Then, he may have to be in the ICU if they find it's too unsafe to remove it.  Even then, there are risks he incurs another issue simply from being in the ICU on a breathing tube.

The challenges here are significant and we are praying everything goes as well as it possibly can.

If you could, please pray for him, that the procedure goes well, and that he does not contract any further complications as he fights off two simultaneous cancers.

 

 

One of the Pulmonary doctors gives Andy an ultrasound on his lungs to determine the severity of the fluid issue, and also if there is a good entry point for drainage.

 

We have had classic Spongebob episodes on now for every single hospital stay and have no plans on changing that.

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We had a nice date night Friday and Saturday.  Andy got us a little pizza and I picked it up, and we ate while watching the sunset fall over the medical school quad and Plantation Street.

We also talked about our favorite vacations and trips over the years.  Andy's voice has been affected by all this, so I did most of the talking, but it was a beautiful time nonetheless.

Wonderful RN Night Nurse Ryley was on (which is always a major comfort - she does such lovely things like never talking loudly at him when he is tired, never clacking the door latch and getting anything he needs) and we had a great pop-in from RN Natalie who we also adore.

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I used to be really into astrology when I was a teenager.  I had this book I would flip through all the time for insights into different star signs, personalities, etc.  If I liked someone I had to know if "we would make it" - which when you are 13 you have absolutely no idea what that even means.  Maybe make it through 48 hours before you forget about each other.

With Andy, I knew I loved him early on.  So I had to look up our signs in "the book" and... THE HORROR.  We were not compatible.

Not only were we not compatible, in fact, the book instructed me (as a Gemini) that I should steer clear of Capricorn men at all costs - they were a poor match for my personality.  I would find him too judgmental, obstinate and rigid in his rules and definitions.  He would find me flighty, over-eager, chatty and annoyingly indecisive.

And I have to say, the book was right.

• Andy plans everything out like a military rescue flight plan, he chooses what he wants from the menu sometimes days before our dinner reservation, prefers the company of just a few close friends and the comfort of a stable routine.  He hates surprises, forgetfulness and changing things at the last minute.

• I enjoy going to large and loud parties, having many friends around even if they are not deep connections, talking all the time and am often irritatingly unpredictable.  I repeat myself and sometimes forget a decision we made.

But that's all OK!  And we love each other anyway!  No marriage is perfect and we have clashed in from time to time over these opposite traits.

 

Our star signs in our bedroom.  I think I got these at the gift shop at Tower Hill Gardens

And yet, marrying him brought so many gifts.  I have 3 incredible step sons in my life - boys I would want to know just as people even if we weren't related (they are that wonderful) a mother-in-law I adore and who has mentored me in many ways, the older brother and sister I've always wanted and a second home in Japan and so much more.

Most importantly, I have a partner who would do anything for me, save and invest for my retirement, watch for my safety, open my door, pull out my chair, put on my coat.  He protects me, has never hurt me, never looks at other women, never lies to me.  He is never fake, ostentatious, and suffers no fools.  He loves me with all his heart, and I love him.  We have our problems like any couple and this drama we find ourselves in shouldn't put our relationship on some kind of pedestal.  

But -- it does remind me that it feels good to be committed to another person with your whole being.  

When you go all-in, just go all-in.

The biggest things that have worked for us: 

1. Always think well of each other.  Look upon the other with tenderness.
   
2. Do not go to bed angry and hold no grudges.
   
3. Work every day to cultivate 3 things: Romance, Friendship & Commitment 

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Being in the trenches with him, night after night, day after day, he'd do it for me, too.  He is suffering for our sake, he takes these drugs, these procedures, these pains, these risks - to be around for us. 

 

 The glow at night from his IVs. 

They will sometimes beep loudly when they are done at all hours of the day or night.

 

He has been hooked up to a heart monitor, chest port, oxygen and these medication drips for days and days.  Every time he has to move it's a puzzle figuring out how not to get wrapped up in wires and lines.

 

I don't know how he manages to not go insane, it might be a combination of painkillers and Spongebob, but I also suspect it's the Capricorn in him.

 

Many thanks to:

RN Natalie, RN Pam, RN Ryley, RN Jen B., RN Tina

Winsome, Brigitte, Sandy, and Bea

and the woman-with-the-plan, the extraordinary Dr. Pearson 

 

And to our friends and family and everyone reading:

THANK YOU THANK YOU THANK YOU

for your love & support

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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.

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

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.

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

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.