For better or for worse

Normally, the “until death do us part” is the part of our marriage vows that rings in my head these days.

But today was a strange day.  I mostly took the day off work to take A to doctor appointments.  And mostly it was an awesome day.  There’s just something about getting a lot of one-on-one time with one of our kids.  They are all seriously amazing, awesome humans.  At their current ages,  and considering I work full time, when we are all together there is a lot of vying for my attention, and they can get nasty with each other, or with me, and exhausting, and just generally challenging the way young humans are.  But A is 7 now, and goodness, she’s just a good and interesting human, and we mostly had a great time together (except when I basically had to hold her down for a flu shot, but…)

A few things stand out.  I had an interview with one doc.  Going through my file he asked, “so what happened with her dad ?”… the usual shock: “Wow…. nothing short of tragic…how are YOU doing?… are you seeing someone? Do you have friends?”  You may think some of these sound blunt, but I typically appreciate the blunt comments to the over-cautious, or completely- ignoring-it ones.  But I would be lying if I didn’t admit my eyes filled  with tears a few times during that discussion.

At the next appointment, I got some paperwork I had to update highlighted fields and glance over the rest, all vital PII… down to Marital status: Single.  Choke.   I get it.  I do.  And yet…  Widowed should always be an option.  Single just does.not.cover my status.  That appointment brought us to the 6th level of a building with glass walls and elevators and A kept talking about how if Daddy were here she would not let him near the edge, would tell him not to look down.  Daddy is afraid of heights, yes.   In the present tense.  This discussion with the nurse, who didn’t know.  The anticipation/discomfort I felt for whether she would find out in this conversation (she did not.) The doctor who did know.  the discomfort I felt for her/me/A.  The present tense.  I love that she speaks of him that way.  And yet…

At the end of the day, I had to take the dog to doggie ER.  Hopefully, fortunately, he’s going to be ok.  On the way home with him and 3 prescriptions, I felt myself falling apart at the seams.  The engineer in me tackles. Assesses the situation.  Takes action.  The human in me is secretly always afraid if I take someone I love to the ER, he or she will never come home.  It’s a weird sort of PTSD.  And with a 13 year old dog… is he already living on borrowed time?  I don’t know.  There is the part of me that remembers how much Tim feared dealing with his death – the dog’s death.  The moment for the kids of course, but secretly, I think the thing he feared most was dealing with it himself.  Watching the movie “Marley and me” broke him.

And here is the thing I thought about driving home tonight: Tim, my love, for better or for worse, everything in my life is because of you.  What a strange thing for a feminist to think, to know to be true.  My whole life is inextricably linked to you. This dog that we got together.  This particular dog that you convinced me to adopt, when I was initially turned off by his jumping up on me at the Homeward Trails meet and greet event in Georgetown.  This dog who was our first baby, our first shared love, who stole my heart before our children did.  This dog, these other three humans who made my heart grow and expand and who have all basically defined my life, whether I thought I wanted that or not – for better or for worse.  Everything I do and everything I am is now defined by them.  For better or for worse.  Whether or not it was what I ever thought I wanted.  And I would have it no other way.  I told him that a million times in the 26 days.  And yet. I have to make all the decisions alone now, without him here.  All the decisions for all of them, without the one other person who loved them just as much, who’s life was defined by them as much as mine is.

When I came home, E told me that the kids were asleep.  That the girls had asked if BJ was coming home tonight, or if he would stay forever.  And  for the zillionth time I was reminded:  I’m not the only one with that special brand of PTSD.  I woke them both to tell them I was home.  To tell them BJ was home, and he got medicine and should be OK.  But I remind myself he may be on borrowed time.  And I will need to deliver another message some day.  And the way in which I deliver that message is entirely up to me.

Anyone who has worked with me is likely to tell you that I love to be in charge.  I tend to think I make decisions better than most people.  But there are days when the magnitude of my personal responsibility is crushing.  And all I can do is hope that I continue to make the best decisions possible.

For better or for worse.

The hospital time… the 26 days

Recently, A asked me “why didn’t you take us to the Fun Fair last year?”

I said, “Auntie Anne, Stacia and Shruti took you and R because I was at the hospital with Daddy.  I was at the hospital with Daddy all day every day when he was there.”

As a  working mother, (as any mother, I am sure!) it is always a challenge to find balance.  I always told myself that there is balance in the whole, never in each single day.  It was a challenge more than ever for me to find balance in that time.  Sometimes I felt guilt for how much the kids were missing time with me.  But truthfully, I never doubted where I needed to be.   I pushed every day for recovery, for hope.  I pushed out any negative thoughts. I love my children, but truthfully their very existence was only a reality because of my love for this man lying in the CV ICU.

I could be wrong, but I believe that the kids will one day want to know more about “the Hospital Time.”  The girls – first R a lot, then later A a lot… asked me why they couldn’t go to the hospital, or when they would be allowed to go to the hospital to see Daddy.  I’ve known for a while, that I WANT to write about that time… use my memories, and the notes I kept in my notebook daily… I mentioned it in my post The hospital time… “Love is watching someone die” and yet, I’ve struggled to sit down and do it.  I think now is the time. This may be long…

I talked mostly about Wednesday, May 17th in my post Flooded with memories and I think I captured as much as I can remember about that day… perhaps the only thing I didn’t cover was that on my drive home from the hospital, I got a call from a urologist who had missed seeing me.  I remember exactly where I was when I spoke to her.  She told me about some side effects and swelling that had occurred due to how they installed the ECMO lines.  She asked if we had children. I said yes, 3.  She asked if we were done.  I faltered… Tim had always wanted 4.  We had said when D turned 1 we would decided if this was it or not.  But we had certainly talked about it being it.  He texted me on the way to his guy’s trip to Richmond “would you ever consider an IUD?” I thought “what the heck are you guys discussing in this car?”  The urologist told me he could be left without the ability for more children. I almost laughed out loud.  Everyone else had been edging around “survival” in every other conversation for the last 24 hours.  I told her that was perfectly fine with me, if that was the side effect of this.  I couldn’t wait to tell Tim how much easier (and cheaper) a vasectomy would have been.

Now I’m going to go through the notebook I used in that time to capture the important stuff.  The notebook includes every single medicine Tim was on, including dosages, the names of his primary nurse and attending physician each day, plus the name of every specialist we saw.  I may not bore you with ALL the details, but include the most pertinent pieces… Besides my name and phone # in case I lost it at the hospital, I doodled this in the front of my notebook, I think once when they took him out for a test.  This was the song I sang to him every day…

Maker:S,Date:2017-12-2,Ver:6,Lens:Kan03,Act:Lar02,E-Y

 

Thursday, May 18th

This was the day of the first CaringBridge post(s). Which I shared on Facebook to let people know what was going on, and where they could look/sign up for more information. That was helpful as it gave a focal point for information and how to help…. It opened the flood gates in ways I never could have imagined, of people wanting to help us.  People showed up in ways that displayed the very best of humanity.

I remember walking downstairs that morning and just as I got to the bottom landing of my stairs, Anne walked in.  I was confused until she told me she slept at the hospital the night before.  She had driven from Massachusetts almost the whole previous day, and then stayed at the hospital all night.  I was so very touched… so very glad that someone was with him.  Desperate for some positive news that she didn’t have.  But I was so glad to see her, and realized oddly that it was the first time she’d been to my house. (We had moved in less than 2 years before.)

That day there was a bronchoscopy at 10am.  The first I heard that word, but not the last.  Dr. Desai let me stay for it. “Dr. Bobby” was the best at them and most often consulted.  They did it again at 3pm, and then later when they were able to get Dr Bobby in to do it.  Basically they were trying to suck the big mucus in his lungs out, caused and stuck there by the pneumonia. That was also the day they were really concerned about the blood clot in his leg, and when they shared with me for the first time that due to everything else going on, specifically the blood imbalances, they couldn’t do what they would normally do to effect that and get the flow of blood to his foot. They told me this could lead to a below knee amputation.  How Tim would have hated that.  But then they told me they were eager to get the ECMO settings down, to get him off ECMO as soon as possible.  And that they wanted to do a CT scan on his brain to see what effect the blood imbalances may have had on his brain.  And that hit me hard.  Up until now they had mentioned every single other system/organ/you-name-it, but they hadn’t mentioned his brain.  That was my biggest fear.  And I remember thinking:  If his brain is damaged, if he’s not TIM, is there even a point of all of this?  I did say this out loud to our friend Anne, and she told me yes, there is always a point.  Most importantly they told me this day that we are “not beyond hope!”  And that we needed to get his platelets up to decrease the risk of a spontaneous bleed (particularly in/to his brain).  His platelet count was dangerously low – they said 10K – below 20K there is a significantly increased risk of spontaneous bleed.  That day the Kidney doctor, Dr. Adam Pearlman, told me his senior partner was coming on tomorrow.  He had been there since the beginning with the kidney “CRRT” machine being one of the first machines, but I smiled and nodded about someone new.  Dr. Pearlman was awesome.  His bedside manner was one of the best I’ve ever experienced, he was patient, and kind and compassionate, and if I ever have kidney issues (or anyone close to me does) I will seek him out.

I remember one other thing from that day/night. As I was leaving the hospital, I looked in on the family waiting room where Tim’s parents and his best friend were.  Doug had done so much to organize the troops.  New email address, paypal account, website, multiple google doc spreadsheets to organize and share information… he was working hard on his computer.  He had been there when I had to tell Tim’s mother the news of the day.  As I walked out I turned back to the three of them and there was some comment about how someone was taking care of the kids, and how so many some ones were taking care of all of the things.  I mentioned how bad Tim was at accepting help.  “so I guess its best that it’s me that has to”… then my heart dropped.  Did I really just tell these three that it was better that he was sick instead of me?  Fortunately in response to the look of horror on my face and stammering, they all jumped in that they understood what I meant…

Friday, May 19th

This was the day they confirmed the bacteria in his blood, as well as the mucus in his lungs, the bacteria that caused the sepsis, was e coli,  which is the most common bacteria, so they had already been treating him for that bacteria with the antibiotics they were giving him.  My first reaction was “isn’t e coli from poop?  How could that have started in his mouth?  How could all this be from a tooth abscess?”  Everyone was still baffled.  Though I know now, of course, that they expected a blood cancer from the moment he arrived.  In the morning, they wanted to do a heart echo after slowing down the ECMO to see how his heart was doing.  They started getting pulses in his foot (for the first time in 2 days) so there might be hope for keeping his foot!  It was also the day that he woke up strong (truthfully the last day he “woke up” at all) …. I wrote down in my book “Not making as much improvement as they would like… therefore, may not try to wake him up today.”  But they did.  Some of our attending physicians were fairly rogue.  When they woke him I was there and speaking to him.  Practically in his face.  I didn’t get to hear him speak to me, but he saw me then. He looked at me.  With his eyes, he implored me.  He was afraid.  He tried with his left hand to pull out his breathing tube.  Then he started moving his legs, and everyone was freaking out that he’d disturb his ECMO lines, so they started jumping in to help restrain him and push more pain meds/sedation until he settled down again.  It was incredibly scary.  And yet that was the fear I longed for over the days to come.

I also had trouble finding a private space to pump that day, so in desperation I found a waiting room on another floor (at the CV stepdown unit I couldn’t wait for Tim to get to) that was empty and set myself up in the corner.  I sent a hilarious pic of it to some girlfriends/mommas.

Before I got to the hospital that morning, it was a beautiful day, and Anne and I walked A to the bus.  I took an amazing picture R made for daddy to him and hung it up in his room at the hospital.  Its him (drawn in orange, his favorite color), in the hospital, a multi-colored building, with a ton of people lined up outside to go visit him… That night, I took a photo of the amazing village of people in my living room.  I remember thinking how much I loved them. (In photo below, my sister, sister-in-law, and three best friends from college with A and R)  How excited I would have been a week ago to have them all here in my house together, and how, at that moment, I’d have given anything to send them all home… with their help, and my finished laundry, and washed dishes, and purchased groceries, and completed meals, packed lunches and washed bottles and pumping stuff… and trade it for Tim at home.

 

Saturday, May 20th

I got in and saw that Tim had gotten a shave.  I had asked the night before about nourishment.  This was the day they put him on a feeding tube.  How he would have hated this, so I joked it was just his favorite Peanut Butter smoothie.  They told me he had had an A-fib the night before – irritability / irregularity in heartbeat.  The sort of thing they shock you for in the movies, but here they were treating it with medication. His heart rate went all the way up to 180.  Was 120 when I got in.  They did an ultrasound of his right arm that morning.  Didn’t see a clot.  Were still very concerned about it not moving during the decrease in sedation the night before, especially since it’s his dominant arm.  (Every day I held his hand – I went side to side, but towards the end, I did favor his left because I hoped he could feel me more.)  They reduced the fentanyl and introduced precedex that day in a hope to keep him calm, and he came off all 4 pressers (to control his blood pressure.)  They told me that during his bath the night before they found a hole just above his rectum, and that that may have been how the e coli got into his blood stream.  Said it was similar to a fistula (infected tunnel between the skin and the anus).  This, to me was Eureka!…. this hole was the issue.  It wasn’t hemorrhoids after all!  (That he’d complained of Mother’s day weekend.)  This was how the bacteria got into his blood stream.  Still… this was an abnormally extreme response to e coli, so there had to be more… but this wasn’t caused by a tooth abscess,  Oh why hadn’t I gone with him Monday morning into the Dr’s office?  Why hadn’t I insisted on a rectal exam and blood work?!!???

Tim’s Uncle was there that day, who is a PA, and helped explain a lot of things to me.  He really helped me understand how advanced INOVA Fairfax is, what wonderful treatment Tim was getting, how remarkable it was that they had 4 ECMO machines!  It was also the day that the CT scan came back with a bleed on the left side of his brain… which was causing his inability to move his right arm.  My worst nightmare – his brain was effected.  But this entire scenario was nightmare after nightmare, and I kept surviving.  When they discovered the brain bleed, they immediately took him off Heprin (through ECMO).

Sunday, May 21st

This was the day I met with the neurologists.   They went through all the possible options they would want in order to monitor his brain bleed and edema (swelling) … pressure monitor, drain, decompression craniotomy…. things that were not possible in his current state.  And the thing they were all itching for was an MRI. They all wanted more than what the CT could show them.  They introduced a bit more on the “presser” front… talked about him needing even more once they “get him off ECMO”… changed some abx and sedation meds…his white blood cell count was still a big concern… I learned some new words.. leukopenic = low white blood cells; pancytopenic = low everything, “neutropenic” precautions were introduced, washing hands, wearing gloves, all of us entering his room wearing masks.  They did an echo in the morning and his heart was still weak. The infectious disease Dr told me the “pilonital cyst” had already drained when he got here (what caused the sepsis)  the e coli was all over his blood.  He seemed to be responding to the antibiotics, but the low blood cells and platelets were not good.

This was also the day my attending physician changed. Dr. Desai grew on me, he felt like a lifeline, and I like to believe I grew on him.  So I was nervous, but he told me Dr. Dhanani was a mentor of his, and I would be in great hands.  He was right.  Dhanani ended up my absolute favorite attending, and as he was an attending in both the cardio ICU and neurology, it was helpful in this scenario to have that crossover.  When he learned I was an aerospace engineer, he geeked out with me on the technology, the science, the aerodynamics, thermodynamics, fluid dynamics, and those conversations were so helpful to use those parts of my brain, and to have someone speak to me academically, and not only like the poor, sad, pathetic, sympathy-inducing wife.  He showed me everything, and I needed that.  I craved information.  I could not get too much of it.

Monday, May 22nd

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I printed family photos our photographer had done in October at CVS, and hung them in his room.  I knew he couldn’t see them just yet, but along with all the kids art work, I wanted them there for when he could… and deep down I think I wanted all the medical staff to be forced to remember what they were doing.  I needed them to need to want to save this father.   He had an early bronchoscopy that day, got “a big chunk” – an estimated 30% of it that was blocking his airway.  They planned to come back that afternoon with a new machine.  They kept saying they wanted to get it all before “coming off the ECMO.”  His platelets were around 30K, there was no increase in his white blood cell levels.   I didn’t write about this, but I think this was the night that I went back after coming home for the kids’ bedtime, around 10-11pm to see the cryoprobe bronchoscopy.  My friend Shruti was still in town and went with me.  We tried to stop at the drive thru Starbucks but they closed up early and didn’t serve us!  We got to the hospital in time to see it, but it was crowded in there.  A lot of medical professionals there hadn’t seen this used either, so it was a good learning opportunity.  Shruti and I watched from the station outside his room, mainly through the window reflection of the machine’s screen (images down his windpipe into his lungs).  It was painful to watch, but I couldn’t imagine not being there.

Tuesday, May 23rd – Cancer Day

It had now been a week in the hospital.  This was the day the flow cytommetry came back.  One week in and a diagnosis. Cancer.  Splenic, marginal zone B-cell lymphoma to be exact. Google that – everything tells you it occurs in older adults.  It was such a totally random cancer for him to get.

The way they explained it to me, these B-cells had multiplied like crazy and taken up all the room and pushed out all the other cells.  All the good cells.  All the ones that do good things for us every day – like keep us alive.  The GOOD news was that it was treatable.  Often treatable with a chemotherapy called Rituxan. So they said they would start that the next day.  They needed to figure out new protocals, because they had never had an ECMO patient start chemotherapy before.

This was the day I took the fist bump photo… the girls had been asking so much, and I could not bring them.  So my friend Christine said – how about taking a pic of his hand and let them high-five your phone?  So that’s Christine there in her scrubs… but the high five was too tough without her actually having her hand in the pic too, so we decided on a fist bump!

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Wednesday, May 24th

In the morning, when I woke up, I had great success with the Daddy fist bump.  Girls loved it.  So when I went to my first pump session at the hospital, I decided to post it to Caring bridge with a note, thanking everyone, and admitting:

I know Tim is loved by so many and I do not corner the market on pain. This is hard for all of us and we all handle it differently. If you see me and you lose it…don’t apologize. I understand.
He will be so touched by everyone’s kindness and to read everyone’s comments when he can!!!
This morning the girls got to give him a fist pump through my phone…to give him strength which he will need today!
It occurred to me that many of you might like to give him a fist pump too. ✊

That day we also received the most amazing care package of things for Tim and I, and many many crafts for the girls from my tri delta sisters, as well as a very neat care package from Lucas (Tim’s brother)’s company in the United States Navy, including a soft blanket with many words of comfort.

Around 4pm they started the chemotherapy.   I was so afraid.  I’ve been alive long enough to know that chemotherapy kicks the but of really healthy people… let alone people already on many machines keeping them alive.  But I was also full of hope.  He was already on steroids.  And he was getting only one chemo drug – not a cocktail, because this one drug has shown significant progress against the type of cancer that he got.  The way it was explained to me he had the best possible cancer to be able to fight it… During the chemo prep, an oncology nurse came. She gave me information on the drug, likely had me sign something, I did that constantly… and I heard one of my favorite nurses whispering privately to the oncology nurse about whether she could be around, or what precautions she needed to take around the chemotherapy because she was pregnant.  For her privacy, I pretended I didn’t hear.  That was the nurse I mentioned at the end of my The end post.  The one who I point-blank asked if she was pregnant, because I figured at that moment, as I walked away from feeling my husband die in my arms, I could be forgiven anything.

Thursday, May 25th – ECMO day

They had originally wanted to take Tim off ECMO before starting chemo.  They determined that that wasn’t possible.  I wouldn’t have been able to remember this timing without my trusty notebook.  Time both dragged forever and passed in a flash at the same time.  The hospital staff was amazing.  When they realized they couldn’t get him off ECMO before they started chemo – which they wanted desperately to do –  they had to write new hospital protocols for how to deal with proper disposal of blood and equipment that touched blood with chemotherapy in it.  They told me he would be going to the OR at 7am for the removal procedure.  I said I would come to see him early in the morning before he went.

I got up at 5am, and headed for the hospital.  I arrive before 6:30 and got a full rundown of the night, blood products, dialysis machine (CRRT) status… I spoke to him, told him I loved him, how much we all loved him… couldn’t wait to see him on the other side.  I thought he might want to know what the ECMO had looked like hooked up to him, so I took this picture, thinking it was the last time I’d see it. I miss those long legs…

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After they took him for the procedure, I went home.  I got in before the kids were all up.  They never knew.  The scariest thing I remember about that trip was driving to the hospital at 5am in the rain.  Pouring rain, dark, windy roads.  And I thought “what if I’m in a crash?  What if something happens to me?  What will happen to them?  Tim and I don’t even have a will.” Remembering those thoughts, I realize, hard as I pushed it down every day, as much as I pushed for recovery every day, there was a part of me, deep down, that knew the possibility of the outcome that eventually occurred did exist…

I took the kids to school.  On my way out of daycare I got a call.  From OR nurse.  She called to tell me Tim was out of surgery.  He had survived it.   I said I was on my way back to the hospital.  She said no rush, he wouldn’t be back in his room for a bit… almost as an after thought I said “so the procedure… was successful?” She said something like “Oh, well, you should talk to the surgeon…”  Basically – no.  He hadn’t “come off ECMO” like they so desperately wanted, but they put him on a new circuit.  Where he had been on V-V and V-A ECMO he was on V-V ECMO only now.  V stands for vein and A artery here.  Basically, his lungs were not strong enough to support themselves on their own or only on a ventilator.  They still needed the support, but his heart was stronger so that’s why the V-V would suffice.   My friends gave this slight improvement a pretty positive spin on Caringbridge that day.  But when I heard it, I was crushed.  The doc who talked straight and academically to me, had impressed upon me the criticality of getting him OFF the ECMO circuit all together.

Next, I drove to the hospital.  Mostly my notebook is full of medication changes that day and settings on the machines.  But in the afternoon, they took the step to lighten his sedation… as they had on the 19th and he had come up so strong, and it was so scary…. however, this day when they lightened the sedation, Tim did not respond. IT was terribly scary.  They rushed him to CT.  Ultimately, the CT showed no NEW bleeding.  The bleeding was about the same, but there was increased edema – which is just a fancy word for “swelling.” On this day I had a new attending.  He was very knowledgeable and competent, but his bedside manner left more to be desired for me.  I wrote down that he told me that they would continue to check his pupils as well as bring down the sedation and pain drugs (Propofil and Fentanyl) for periods before an exam.  He also told me “neurosurgery will want to be very aggressive because you are so young!” and that “we have excellent neuro critical care people including Dr. Dhanani.” probably because he knew I had just gotten to know him over the previous period.  And I have to imagine I’m not the only one who loved him.

Friday, May 26th – Memorial Day weekend

D turned 10 months.  I got his photo in the morning, as I always did, each month in the first year of my kids’ lives.  It was the start of Memorial Day weekend.

That afternoon, my daughter had a recital.  I told Tim I needed to leave early for R’s dance recital.  I would take pictures and videos for him.  R had to wear yellow that day for her part in the rainbow.  The Infectious disease Doctor told me her colleague would be on for the weekend.  I had liked her from the start, so I was sorry to see her go.   She first used the “perfect storm” analogy that day.  That the lymphoma had been brewing a few days, a week, because of it he couldn’t fight the rectal abscess and went into septic shock, and that is what made him so sick.  I could not have prevented this.  “Hopefully it will all be a bad dream one day.” They were changing the ECMO settings in an attempt to wean him off of it.  It’s a bad dream all right.

At R’s recital, I braced myself, I could do this.   I smiled.  I pretended I was normal.  I pretended I wasn’t broken by his absence.  My sister was there, she was filming for me. I knew they were dancing to a Moana song… I didn’t know the first song.  It started … it was Phil Collins, “You’ll be in my heart”.. when it got to the refrain, and R was dancing / acting out with heart-shaped motions over her heart the “You’ll be in my heart.. from this day on, now and forever more…no matter what they say.. you’ll be here in my heart always.” LOST IT.  Thank goodness a friend/mom saw me and rushed over, so I think it was pretty obvious something was going on with me, and I wasn’t simply sobbing at the beauty of a bunch of 4 year olds dancing.    At the same time, my sister registered and turned to look at me, and I think was paralyzed between how to comfort me, and should she just keep filming so I’d have this later… Wow.  Just Wow.

Then I drove home to the most amazing sight.  So many friends from out of town.  My best friend who lives in California, two of Tim’s best friends from MA and NY.. and my neighborhood.   I drove home from the recital wondering how I would survive to the kids’ bedtime… then I got home and my neighbors were cutting my grass, caring for my lawn. Neighbors who had access to my garage, and just went in, just took care of everything, just simply SHOWED UP in the most profound and sincere way.  The keg in Tim’s kegerator was replaced.  The beer was flowing. Our out of town friends, our family, the neighbors.  It was amazing.  And all I could think the whole time was how much he would love it.  I took so many photos that I couldn’t wait to show him when he got better… Look what you missed, Tim, look how everyone came together! I like to believe that he can see them still.

Saturday, May 27th

Back to the hospital after Friday night “off” and I took so many notes.  Mostly on drugs and machine levels.  Had not-my-favorite-attending, but one of my absolute most amazing nurses.  She was from New England and had played ice hockey, and oh how Tim would have enjoyed talking to her!  Poor girl had to listen to me all weekend!

He had increased intracranial pressure (ICP) from the edema which they could see from the eye/ultrasound test and were trying to improve the swelling with hyper-tonic saline.  They weren’t in a place where they could put in a monitor to get a true ICP reading.   They told me they were going to start giving him insulin to counteract high(ish) blood sugar, which is not uncommon with tube feeds.  And I thought, oh how he would hate that, maybe he isn’t such a fan of the PB smoothie.  They were trying to keep his stimulation down due to the ICP, so we kept the lights down, whispering, no loud noises, no music.  I spoke softly to him all day.   I was told that his lungs were about the same, so it would likely be a couple more days on ECMO, he was now making urine at a good output… they were giving him red blood cells to improve his oxygenation.  His sodium was up to where they wanted to effect the swelling.  At 5pm they removed a line out of his neck that he would need for dialysis but he doesn’t need now while he’s still on ECMO… because they don’t want anything that could potentially hold up blood flow to his brain.

Sunday, May 28th

This Sunday was the day we had planned the Memorial Day weekend cul de sac BBQ.  I had been talking about it with two other neighborhood Mamas well before Tim got sick. A had really been looking forward to it.

Again, I have a ton of notes…his platelets were up to 36K when I arrived in the morning.  I again had my favorite nurse – she worked all Memorial Day weekend.  His ICP was down and his pupils were responsive.  They still wanted him off of ECMO as soon as it’s safe, so they were going to keep him on the dry side for his lungs…  since they couldn’t anti-coagulate him due to the brain bleed.  The attending that day told me that “Medicine is not all science, its some art.”  His liver was about the same, he was still making urine, his chest x-ray looked the same, he was on broad antibiotics to avoid infection, which would be so dangerous at this weakened immune state.  In the morning they considered waking him a bit since his ICP was down but by the afternoon they decided not to move him and not to take a “sedation vacation.” I was disappointed by this, but I was also a bit glad they weren’t going to take the risk due to his brain.  Around 3 in the afternoon his Sats dropped, and they needed to change the settings on the vent, ECMO, remove blankets, his temperature had spiked…  And his platelets were back down to 28K.  They were getting him more platelets.  They were talking about getting him into a new room.  ~ 8pm he had a rapid heart rate which they were able to get down with medication.

That night, we had the most amazing BBQ and neighborhood potluck and  cul de sac kickball game.  I was so glad his mom and dad and brother were here for it.  I loved seeing his brother play kick ball with the neighborhood parents and kids… I forced myself to take photos to show Tim someday… knowing just how much he would have loved it!

Monday, May 29th, Memorial day

Still  my favorite nurse, and my favorite attending was back!!! So a win from that perspective.  He had both a flutter and an a-fib… something that happen in this state…not good or bad…they had to be careful about what to give him to control it.. they are not good for a prolonged period.. came down on their own with minimal intervention.  The doctors gave me credit that he came out of it when I called, and went into one when I went to the bathroom the day before!  He developed a nasty rash on his side…  but they told me this could be a good sign… his immunity was returning enough that he was fighting some of the meds. I write down a ton of machine and medication settings… the day was similar to the day before… starting with a promising platelet number, ending with a lower number and giving him more platelets in the night.

I have great pics of the girls with beautiful Auntie Caitlin braids.

Tuesday, May 30th

This day sucked mainly due to having the only nurse I didn’t like the entire time I was there.  Mostly she was just bossy and rude and didn’t let me be in the room a lot.  Tim went to CT at 1:15pm and returned to his new room just across the hall.  His CT was “about the same” – not worse, so I said “I’ll take it.”  The neuro exam revealed responsive pupils.  The left side was more sluggish. There was NO other response to the neuro exam.   I have drug and machine setting notes, but less notes this day because I was in the room with him so much less.  When she did let me in the room, the nurse was trying to be positive about Tim’s prognosis.  (Which I do appreciate.) She said she’d seen people come back from worse.  Then she told me that she was sure I’d always make him go to the dentist after this.  I stared at her.  Um, are you kidding me?  Did you not catch up on his chart?  THIS was not caused by a tooth abscess! Also he went to the dentist in March.  He goes every March and September, I guarantee it!   I know it was a joke, but seriously… how dare you?

This was also school sports day in Kindergarten, and all my kiddos went to their schools dressed in some of daddy’s favorite sports teams.

I have a photo of a card that came with the blankets that I took that day “Courage is not having the strength to go on, it’s going on when you don’t have the strength.”

Wednesday, May 31st

In the new room, Tim got his Second (and ultimately last) chemotherapy treatment.    It took place approximately 2:30-6pm. Lots of settings and dosages recorded… the Infectious Disease doc was back and she was very interested in the rash.  The Attending Dr. ordered a dermatology consult.  I was also there for the neuro consult.  What I wrote down was that his lack of responsiveness when they lifted the propofol and the increased measurement on his eye stems were both worrisome.  But they agreed that he needed to make progress before anything could be done.  They really wanted an MRI.  They got a new CT, but it was the same as 5 days before.   They discussed a test with contrast, but were nervous to do it due to his kidneys.

This day I also changed my Facebook profile photo to the black and white of us laughing at Manassas battlefield together when I was very pregnant with D.  I was just feeling that photo that day.  Really, I was feeling him slipping away from me, but I couldn’t admit it.

Thursday, June 1st

Learned of another a fib last night…the rash was improving…. I asked whether the chemo was helping… some more drug changes… they found a blood clot in the right ventricle that has likely been there about a week.  They had found this Fungus… that clot could be where the fungus was growing.  “Unfortunately the Rituxan may help attack the lymphoma, but it also makes is easier for fungal and other infections to grow.”

This was a day when in the mail, Tim got a really beautiful card from his NVTC colleagues (team/program he had left about 6 months before, many of whom came to his Celebration of Life.)

Friday, June 2nd

Confirmed yeast infection in his blood and urine.  This was bad news.  At one point my favorite attending called this fungal infection a “monkey wrench.”  This was the beginning of the end, and I could feel the badness, even if I was a constant mantra of positivity.

The rash was improving, he got an echo, and a bronchoscopy.  I had a female attending that day.  She compared a bronch to vacuuming and said “women are better at it.”

I spoke to the hematologist / oncologist this day and I think it was the first time I heard the cancer started in the spleen.  That it was “Splenic Marginal Zone B-cell Lymphoma.” I loathe the spleen. He also told me they would do another “blood test” Monday to show whether the Rituxan was making progress (before Wednesday’s next treatment…)

Due to the yeast infection, the infectious disease doctor wanted all his lines changed.  He was already on anti-fungal medication, and they were going to reduce his steroids.  His blood sugar was also still high.

My daughters went on a tour of the local fire station that night.  Tim’s mom and dad took them.

Saturday, June 3rd

This was the day that we missed Anne, one of our best friend’s wedding.  We had been planning our attendance for over a year.  I peed on a stick the night she told me she got engaged.  I was so worried  I could miss it due to the baby.   And I did miss her bachelorette party due to having a 6 week old.  I met her at college orientation, and she also happened to be my freshman year roommate.  Tim loved her too.  He never got to meet her husband.  She loved Tim.  I used to joke she loved him more than she loved me.  It’s crazy to think we were only both married for one week.

I have no idea why, but I woke up at 3am and had to call.  Everything was status quo.  Apparently around 3:30am all his sats and oxygenation dropped, and no one knew why.  I have so many notes from that day.  The summation of all of it was that he was holding on by a thread.  But he was surviving.  And there were more questions than answers.  The nurse told me that his Arterial blood gas (ABG) was recovered, she also felt his pupils were slightly move reactive for her that day.  I liked her, and it was her last day as a nurse in the ICU.  She had been an ICU nurse for years, and on Monday she was starting a 9-5 research job at the hospital.

I got a lot of great photos of the wedding all day from Shruti and Stacia, my other two close friends from college who were there.  They were instructed to “live stream” the wedding for Tim and I… Tim would have loved that. There was a thing to write them a letter for them to open later, and my friends transcribed it from us.

Also got a cute video of D in a box zooming around with my sister this day.

Sunday, June 4th

This was the day I wrote the “What happened?” post that I included in the “the beginning” post. I just realized I needed to write it. To level set, to summarize, and explain how we got here comprehensively.

A ton of notes about drugs, machine settings… his liver enzymes went up, they stopped the tube feed, planned an ultrasound of his abdomen… the blood cultures came back and were still positive for yeast 😦 (I literally drew that sad face in my notes… he got blood, at 1:30pm, he got platelets.  They re-positioned him at 2pm and his sats dropped again.  The micro lab in the hospital couldn’t identify the type of yeast, so they were going to send it out to have it examined, but also treat for the most common type of yeast (that found in thrush, diaper rash, vaginal yeast infection, etc. ) All his counts were down, they needed to keep giving him blood products, not sure if this was caused by the Rituxan or the underlying cancer.  When I called that night, my favorite nurse was working. The one from New England, who played hockey.  Tim would have loved talking to her.  I kept hoping he would get to….  She said he got more blood products, and now two antifungal meds, the micafungin he’d been getting since 5/16, bit now also, Voriconazole as of today (6/4).

Monday, June 5th

This morning he finally got an early morning ultrasound.  I know it wasn’t the most important thing for a Sunday, but it felt like a shift for me, the day before I had to keep asking.  Now, of course it may have just been a change in the style of the attending. On Monday morning my favorite attending was back.  That felt like such a relief to me compared to the weekend.  There had been no progress in weaning him off the ECMO.  He got the ultrasound of his abdomen/liver before I arrived.  They started feeding him again.  I was also very interested in what Dr Ershler had told me about the repeat flow cytometry to see if the Rituxan (chemo drug) was doing its job…  Dr Dhanani told me they should do a repeat flow cytometry today by Dr. Ershler’s order.  The vent was very noisy that day, and Tim was coughing.  Dr Dhanani told me the fungaemia (yeast/ fungal  infection) was not surprising due to zero immunity… but bad.  He said the statistics (of survival) are not good, but they aren’t giving up!  He was bleeding at his A line, they started the nebulizer to help his breathing.  They told me he would get a bronchoscopy the next morning around 9am with “Dr Bobby”… they did a liver ultrasound, described it as “sludge”- nothing new, no gallstones, but had to be sure they weren’t’ missing anything.  This is why this attending was my favorite…At 6pm there were issues with the CRRT (kidney/dialysis machine) and up on the ECMO settings before I left.  On the repeat blood culture there was still yeast.  I called around 9pm and spoke to my favorite nurse who told me he was getting more blood products.

This day I also got an email from A’s teacher… reporting that she was still doing well, but had been asking her and the assistant teacher for more hugs recently, and she was wondering if she might share the story with the school counselor for A’s age and the administration.  I was so worried about them.  I said YES!  Absolutely!  Please!  I am open to any and all resources

Tuesday, June 6th

My favorite attending showed me an X-ray… re-stated there was nothing more that he’d like than to get him off of ECMO. Around 10am he got the Dr Bobby bronchoscopy.. he “did well”… got a lot of old stuff out.  ECMO settings still high.  Around 11am Dhanani texted Dr. Ershler for flow cytometry… at the morning meeting he had said he forgot.    Today he got Granix, prescribed by Dr. Ershler to boost his white blood cells.  They also discontinued the Valcyte, they think its less important and may be contributing to his decreased white blood cell count.

They June 1 blood culture had trouble identifying the fungus. Sent out to an external lab… The June 3 and 5 culture identified it as “candida fungus.” The lab will test what drug will best treat it.  He may already be on it (the microfungin and Vfend).

Wednesday, June 7th

This should have been the third chemo day…  couldn’t do it due to the fungaemia.  Dr. Ershler told me once the fungus was gone, they would restart the very next day.  They needed to closely monitor his white blood cells, which were extremely low.  I was told Dr Bobby would bronch today.  I wrote down so many medication levels.  Tim’s dad and I spoke to Dr. Adam Pearlman – kidney doctor.  He was there in the very beginning, and had one of the most amazing bedside manners I’ve ever seen.  As I mentioned, if I, or anyone close to me, ever have/has any kidney issues, I will seek him out again.  He told me that they were still using the CRRT machine for fluid removal, but at a much lower “dose” of mechanical kidney therapy.  They were seeing a lot of kidney improvement.  They would probably not consider removing the CRRT until “next week”… it could help the fluid removal with medical therapy (ie diuretics to help him pee a lot) but that could also hurt his recovering kidneys, so they would wait.  He siad if the fungus continues to be an issue they could remove CRRT to get the lines out, but… the ECMO was really the big “line” issue and weren’t able to remove that.  Later, for insurance reasons I had to get ALL the notes, and I remember reading Dr Pearlman’s notes.  I don’t have them here – they are in the filing cabinet in the basement… but my impression of them was along the lines of “kidneys are not the issue here… they are making improvement, but won’t do anything… need to see if he survives everything else…”

I spoke to Dr. Katagaha – the Infectious disease doctor we had had since the beginning who had been away recently.  She told me that she wasn’t happy about the fungaemia development, but it was not surprising (chemo attacking his already weakened immune system further).  She said it was “not a game changer.”  I liked her a lot.  But in retrospect, where hindsight is 20/20 vision… that’s precisely what it was for Tim.

They did an echiocardogram (sp?) looking for puss on thrombus… academic, wont change treatment.  The academic stuff still enthralled me. Could they learn anything from this tragedy that would help others?  I grasped at any straw.  About the fungus, I learned that the 6/1 blood culture came back from the lab identifying the fungus as “cyberlindnera fabianni” and te 6/3 labeled it as “candida pelluculosa.”  I felt Tim would have enjoyed that his fungus included the word “cyber.”

Around 3:20pm, Dr. Bobby did the bronchoscopy.  My nurse told me it was very bloody.  Dr Dhanani really wanted to test coming down on the ECMO, but decided to wait for the next day.   He said the circuit (which is how he always referred to the whole ECMO setup in Tim was harboring the fungus, and need him off of it! (whether or not that is for good or they need to put him on a new circuit.)  Dr Dhanani tried to be positive with me but he also tried to be realistic…his sincerity was always so apparent.  He told me there were so many potholes we could fall into.  The frontal lobe is tricky, but Tim is young, many neurons could regenerate.  HE said supportive family is critical.  The thrombus int he heart.. the fungus/yeast will grow so long as there is all this plastic (lines) and no immunity.

The flow cytommetry results were in with positive results.  The previous showed only monoclonal B cells or lymphocytes, and now they showed polyclonal B cells.  <- This is all they would tell me this day, because the Hemotologist/Oncologist had to be the one to interpret the results, but spoiler alert: basically the Rituxan was doing its job.  Getting rid of those bad B cells that were going crazy and multiplying and taking over all the space of the good cells!

Thursday, June 8th

This was the day I started reading to Tim full force.  I read to him a book he had by his bedside.  He had talked to me about it, but I started it from the beginning.  And I read every single moment that I wasn’t pumping.  When I arrived, I learned that his white blood cells barely budged up.  That they were waiting on Dr. Ershler’s interpretation of the flow cytommetry.

Most importantly, when I arrived, I think slightly later than normal, I saw Dr. Dhanani talking to people in the hallway about another patient, and excusing himself to follow me when he saw me go by.  Much as speaking to him was a highlight of my day, always… I knew this was bad news if he was rushing to see me.  He told me that they had to put a tube “pigtail” in his chest… they had noticed he was not oxygenating well, and an x-ray showed he had “sprung a hole in his lung.”   He showed me the detailed before and after x-rays.  This was helpful.  This was a routine thing to happen for someone on a ventilator so long.  The vent pushed air in so forcefully… He told me he was talking to a Dr in China.  Tim was the only person in the world with this combination of disease and therapy.  In retrospect, I understand the therapy was only because of his age… normally this mix would be considered a lost cause… but his age… they were trying so hard to save him.  He told me it would be him or Dr Desai quarterbacking.  He said “When there’s a fire, everything burns”

Dr. Ershler told me he was encouraged by the flow cytometry results, wished they could check the marrow of the spleen.  He said he suspected we had not cured the disease in two treatments, but that they were going in the right direction with the Rituxan (based on the flow cytometry.)  There were no more monoclonal b cells, only polyclonal.  AS soon as the white cells were pushed up by the Granix, they will do the next Retuxan dose – they won’t wait a day!

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Friday, June 9th

Tim’s eye pressure and optic nerve size had increased so they wanted a CT.  He got a head (only) CT scan at 10am.  His ICP was up.  Overnight he had an afib that lasted about 20 minutes, his blood pressure tanked, so they went up on the Levo and some other BP meds again.  I spoke to Dr Pearlman again, who said he was anemic, talked to me about acid / base, working together, carbon dioxide in our kidneys and lungs, hyperventilating.  It was a long conversation, I only jotted a few things down.  I spoke to Dr. Katagaha who told me she was handing over to Dr. Ambardar, that his latest cultures grew out both funghus and a new bacteria, graham positive this time, so NOT e coli (like it was in May when we came in)… they were going to give him Benadryl and Tylenol first and then a new medication called Abelcet, and they were discontinuing the microfungin and Vfend.  They were introducing a new medication for blood pressure called Albumin… At 4pm I spoke to Dr Dhanani and he told me they were needing to transfuse a LOT more, but they couldnt see where he was losing the blood (was it in a circuit?) but even if they find it, they can’t operate with his white blood cells going up and down.. if they find the infection and fight it, it could kill him, but if his immunity never recovers, then….. He said he’d like a CT scan to see what’s going on, why the right side pressure was higher, but it’s not emergent.

The nurse this day told me that she spoke to her husband about me reading to Tim, about how its something they would do.  I forget all the things she said, but it was a straw I grasped at… someone taking something in to their own life based on the observations of ours.   She also told me as I was leaving  – trying to get home for D’s bath and bedtime – that they were out of platelets, and Dr Dhanani was trying to get some released… she called me at the end of her shift… I always had my phone sound up then when I wasn’t at the hospital, and I was in the process of giving D his bath, I only answered because it was the hospital number – she called just to let me know he did get the platelets and blood products he needed.  I really appreciated it

Overnight they changed the ECMO circuit (not canulas which would require a trip to the ER) and they changed the CRRT machine.  They got another CT scan.

Saturday June 10th

The day.  This was they day I had to accept the end was here.  Now, reading back on all of this, where hindsight is 20/20, its clear why I accepted it so quickly.  I always knew… it had been building.  I chose to ignore it. What else could I do and still survive getting out of bed every day, feeding my children, loving my children.. pumping milk for D?  Others had taken away so many of the daily logistics, but I still had to survive… breathe in and out.  Be strong enough to get all the information from the medical professionals, and put on a kind and loving smile for my children. Be their mother.  Already, I had to be both of us.

Amid the bad news, there were always moments of hope – everyone always gave a little hope.  Plus there was the recovering kidneys, the fact that the Rituxan was actually working to improve the cancer!.. but… but.

I will always remember my conversation with Dr. Dhanani that day.  I described it in my “The end” post.  But I’ll describe again here, in slightly more detail from my notebook notes…Over Tim’s bedside, Dhanani told me the CT scan was OK, no more bleeding, just some inflammation.   Talking to me over Tim, he told me to tell people to go to Woodburn, and give platelets.  (I asked a friend to take me that day…. I had been putting it off while others gave to be there at his side, but I felt it was my duty.)  He said now it’s up to Tim.  We are in a war – there are so many soldiers…. every one we could destroy individually, but they are all together.. all the soldiers “and I’m standing here with a revolver.”  He then asked to speak to me away from Tim’s bedside.  I don’t ever remember him doing that before. He said “I am asking the palliative care folks to talk with you to prepare.  You’re an engineer, so I take you on this academic roller coaster with me… We’ve tried everything.  The academics hate that, because then you have an anecdote.  The data is against it.  But how do you get new data?… Learn something…. We’ve already written new protocols because of Tim (how to dispose of lines for ECMO with chemotherapy)”… He talked about how his colleagues thought he wasn’t being objective… he was too invested… he might even get pulled off… all of this I am vigorously nodding at him Yes! All of this!  Try everything!  Get new data!  Make my Tim the one who beats all odds!  He is my Tim… he is THEIR father.  Its all he wanted – he has to live to be their father!  And then.. then he said it and everything in my world changed forever:

“I wouldn’t be doing my job if I didn’t tell you Tim is dying.”

Those words set everything else behind the scenes in motion.  Those words brought my family in town, all his best friends to the hospital.  Dr. Dhanani also said “if he goes into cardiac arrest, I won’t do CPR.”  I didn’t ask him to.  It was so obvious to me how devastating this was to this man who didn’t even really know us.  I am always ready to fight.  I had been fighting for 26 days.  I had asked Tim to keep fighting… I had begged him to forgive me for letting him do all of the things.  He would have hated it all.. to be on life support?  He would have despised it… and yet I had begged it of him, compromised with myself that he’d do anything to survive to be there for his children, to see them grow up… but I could not ask him to keep fighting when it was so clear the battle was lost.

I will also always remember my conversation with Dr. Pearlman as well… he told me with all sincerity that if the King of Jordan was in the United States, and this happened to him, he would have gotten no better treatment than Tim did.  I remember in that hallway, pouring out some of my heart to them.  Thinking out loud, that I wonder if it wouldn’t have been better that if this was the end result for it to have happened that first day so he didn’t need to suffer for 26 days… but no, right there in that moment, I changed my mind.  That would not have been better.  This was his last gift to me.  26 days ago, I was a different person, I couldn’t understand.  I never would have been able to accept… my eyes filled with tears, talking to these two men who talked to me like an intelligent person, not just a sad wife on the verge of being a widow.  These two men who looked at me with such compassion and understanding, not pity.

They felt like family by then.  All of the nurses and doctors and technicians I had spent the most time with those last 26 days. I felt more at home at the hospital at that point than I did in the walls of my own house… it felt impossible to explain to all the people who loved me… who were caring for me and for my children at home, what it was like at the hospital… having that time with Tim…

I did go to a small room to talk to the Palliative care doctor.  I found out she also lived in my neighborhood, also had a son with the same name as our son.  Her name was Dr. Heinz.  I asked her to speak again to Chief and I when Chief could get there after the Nationals game he was at with A and a million National Capital Region girl scouts.  She made me calm from my frantic immediate impression that I couldn’t possibly leave Tim’s side for an instant until the end… I talked a lot about this in my “The end” post.  She talked about “transition to comfort,” she talked about who I needed to tell, who needed to come… She later told Dr. Dhanani that i understood.  That I was “OK.” I can only imagine how some people react.  And I get how OK I must have seemed compared to some.  Because I understood.  I understood and I accepted right away.  Although, I wasn’t of course, “OK.”  I know too well, and I knew it then, that it was very unlikely I’d ever be OK again.

Sunday, June 11th

Return to the hospital at midnight… just like we had 10 months before together for the birth of our son… this time with his father, to get to him.  For the opposite of a birth.  I described all of this in my “The end” post.  I don’t think I have any more here that I could add.  Dr. Desai was on that night and I was relieved it was him.  He had been with me at the beginning.  I knew he was affected.  But he was professional.  And he did what I needed, he said what I needed him to say.

I couldn’t have asked for better care for Tim than he received at INOVA Fairfax hospital.  I am grateful we had moved close to that hospital less than 2 years before.

I’ll say this.  In life, if you live a very full life, you are likely to hold someone in your arms as they breathe their last breaths.  Likely, it will be someone you love with your whole heart, your entire being.  I hope, for your sake, this is at the end of your very full life.  It is something nearly indescribable.  It is something you can’t possibly understand if you haven’t been there.  It is both terrible and beautiful at the same time.

I wrote this monster post for my children.  I want you to know, when you ask, when you are ready for answers – what these 26 days were like… and I come back to the quote from the Deathcab for Cutie song from my first “The hospital time”” post:

But I’m thinking of what Sarah said that “Love is watching someone die”

So who’s going to watch you die?…

I would always encourage you to love big, love hard, don’t hold back.  Love, no matter the cost.  I have loved hugely, and I have payed the ultimate price, and yet I say… Love is always worth loving.

June 11th is coming.

June 11th is coming. Like a storm brewing in the distance that you are powerless to stop.  Just like the freight train that May 16th was… So too is June 11th. I woke up and knew it was Monday.  It’s a week from today.  A week from today, it will be a year from that morning that I had to walk out of the hospital without him, for the last time.

And I remember standing at his bedside, singing to him, and telling him it was ok to “let go,” it was ok to “sleep well” and telling him I wouldn’t make a big deal of the date. Promising. Because he thought recognizing deathaversaries was ridiculous. He teased me about my “obsession with dates.”

But that was before I was widowed at 36.  That was before my love, the man I gave my heart, who I had babies and plans and dreams with, died in my arms.  That was before I was in the hot young widows club and was familiar with the word “deathaversary.” I think of how he responded when my friend died.  How he felt for her husband.  And I think he would forgive me.

But I think I can honor him by not making a big deal of June 11th with the kids.   We have the baseball game coming up next Saturday, followed by Father’s day.  Where we will honor him, we will celebrate and remember, like we did for his birthday.  But I think the idea of them noting his deathaversary he would have really disliked.  I decided to take the day off work.  I could plow ahead, and work that day.  I worked May 16th and 17th… I’m sure I could do it…but when I considered taking December 11th off for The half year mark, and didn’t go with that… I ended up with R in the ER the night before and taking off anyway.  So I took the day off.  And we’ll see how that goes.  But I am not telling the kids I took off, because I don’t know how I’m going to be.  And if they learn that I didn’t go to work, I am definitely not going to tell them why.

I worry about them all, constantly. This time last year top priority went with A, when her interest in what was happening was heightened… That it wasn’t just a party with friends showing up at the house all the time… But something was really wrong. And why could everyone else go to the hospital to see daddy and she couldn’t… Right now she’s the one I’m worried about most too. Will she know or find out what Monday is even if I don’t tell her? Last night she did something that upset me for the first time. At a girl scouts end of year pool party we had pizza, then she asked for a cookie AND a brownie. I was fine with it so long as there was still enough for everyone. Maybe another parent had said one or the other (my standards have dropped in the last year) because a friend said to A “no fair.” And I heard her say “don’t you know what happened to my dad?!” I was shocked and I let her know. Only one other parent heard it and it was a brownie’s mom so I’m not sure if she knows… I went over and told A that what happened to her dad is incredibly sad but it does not mean she gets extra desert. They are completely unrelated. Goodness, sometimes I have no idea how to do this.  We had another sad, sweeter moment over the weekend where I chose to sit down and look through her selfies with Dad book with her. I hope it helped. Without completely understanding the calendar, I can’t help wondering if she feels what this time of year brings.

June 11th will come.  I can’t help that I know what day it is.  But I think I can honor him by not telling them.  But I also remember that these tiny humans I look at every day aren’t only half-Tim.  They are also half-me.  So I have to hope they forgive me for not telling them what day it is.  Some day, they won’t be able to help knowing, and they can chose to do as they want with that information.  But for now, I will keep it to myself.  And we’ll see how this goes.

“You have stolen my heart
And from the ballroom floor we are a celebration
One good stretch before our hibernation
Our dreams assured and we are, we’ll sleep well… sleep well… sleep well… sleep well”
~ Dashboard Confessional “Stolen” (Our wedding song)

Reliving the trauma – a year without your voice

My dearest Tim,

I had told myself this time was going to be hard.  This week especially, but mostly the time between Mother’s day and Father’s day when I’d re-live the worst 26 days of my life… the memories of the hospital… when all of the sudden I’d flip the switch, and Facebook would no longer share “1 year ago” memories that you had posted…. all of YOUR posts would all be older than that…. putting you just a little further away from us.

I thought I had prepared myself for how hard this was going to be.  But I had no idea.  Similar to what I said in my Pain post, its hard to imagine that it’s real – the physical manifestation of grief, or that you have no control over it… much as you may WANT to be happy, to live in the present, the past has a way of sneaking up and taking the wind out of you.  Even just seeing May 16th or June 11th on the calendar, or on a meeting notice that I am sent… it takes my breath away.   I sometimes think that you would laugh at this… call it my obsession with dates… but I mostly think this was all so beyond your realm of imagination, that you would accept whatever I think/feel/experience as fact.

I’ll tell you what I have planned for tomorrow.  Because it will make you laugh.  You will shake your head because you think its ridiculous, and smile because it’s so me….

I remember what I wore that day.  May 16, 2017.  It was a Tuesday.  I went into work my regular time after taking A to the bus stop, and taking R and D to daycare. I left work like a bat out of hell after lunchtime because you told me you had vomited and you still had a fever and were sweating through your clothes.  But I often wonder, why did I even go to work that day?  What if I had realized how sick you were, and simply stayed home and just lay in bed with you… sleeping while all the kids were at school or watching Netflix.  What if I had had those final, quiet, peaceful moments with you?  Moments I can never get back…. but I rushed to work because we were working a Task Order proposal… because I would have felt so much guilt to send the kids to school and lay in bed with you…so much guilt to not be contributing at work…  I remember what I wore because I remember looking down at the skirt in the hospital.  A long, flowery skirt.  After that day I would look at that skirt and it would remind me that I went to work that day, instead of reading the signs and staying home with you… I couldn’t take seeing it much less wearing it so I put it at the back of the closet.  So I wouldn’t have to see it, and feel that guilt and heartbreak.  I will wear it again tomorrow.  Because let’s be honest, I’m going to feel the guilt and the heartbreak tomorrow no matter what.

A year since I heard your voice.  Since you teased me. Since I heard your laugh. Since I told you not to pull out your catheter and freaked out your nurses… who I then had to explain about my bad-patient-father who you, my rule-follower, are nothing like… who told me they thought girls married men like their fathers… and I said, not my sister and I!

So often I hate how things went down.  That I never got to ask you… so many things.  That I never got to hear directly from you what you’d want me to do on my own… But mostly I don’t hate it.  You would have hated to face your own mortality.  Better that all you knew was that you had pnemonia.

Here’s a really fun fact about the disease that you got:

Median age at diagnosis of SMZL is 69 years. The overall age-adjusted incidence is 0.13/100,000 habitants per year. The percentage change in age-adjusted incidence is 4.81%, with most of the patients being White. Gender prevalence is controversial, but there is an increasing trend to male predominance. – from the NIH at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5457460/

Seriously.  69 years.  You had literally JUST turned 37. What. the. fuck?

I had a dream last night in which you and Colleen were playing golf… I can’t imagine Colleen playing golf…and I don’t think you played at all since A was born… Maybe a trip or two to Top Golf with friends?… But you were in this little stretch with strips of green grass… and I had the impression that you guys were growing tomatoes in the patches of dirt in between…the area was small but it overlooked the ocean…like you guys were hitting balls out into the ocean. The kids were up a bunch last night so I was in and out of sleep… I dreamed this scene and later I dreamed it again like I was watching it on TV… with other people… remembering you and Colleen… and I told the people with me “its how I imagine them in paradise.” (Though I’m not sure if that’s true?) You were both facing away from me so I never saw your faces….but I heard your laughter...and I can hear it still.

I had another dream too, which was so much worse. All of the sudden I was at your side as you took your last breaths again.  Only this time it wasn’t your dad there with me, it was my sister.  And she wasn’t on the other side of you, she was behind me.  I remember looking down and both your legs had been amputated at the knee.  There were just two silver plus signs.  I asked the nurse why and she said because you didn’t need them any more, you couldn’t walk.  They told me you were gone… I was lying on your chest again, feeling the last of your warmth, the lack of machine-breathing that there was at the very end. The silence when they turned off all the beeps on all the machines for me…. I forget why but Jean said to me then that you were gone, you were not suffering…  And she said that dad was suffering more, so much worse…(in fairness, I know she’d never actually say that to me, but it probably is true)… and my response was “there is nothing worse than this” and I sobbed and fell to the floor.  I woke then to D calling for me, in my bed with R asleep beside me.  My eyes were dry but squinting, and my whole body was still shaking from those wracking dream-sobs.

Damn, that was a terrible way to start the day. This Tuesday-after-Mother’s-day.  You would tell me not to celebrate anniversaries of sadness, but I can’t help it, Tim.  I can’t control my dreams.  I can’t control re-living the trauma.  All I can do is survive it.  And keep our kids alive and thriving.  I don’t know that I am doing this dead parent child raising thing right, but I’m doing my best.
I have low moments.  I have low lows.  Sometimes I think they would have been so much better off to have had you rather than me.  But I chase away the lows, I chase away the “what ifs” as you would want me to… I don’t make you proud every moment, but damn, I am trying.  I miss you as my love, my husband, my partner, my co-parent, but more than anything else, I miss you as my best friend.  Isn’t that a funny thing about life?

I don’t know if paradise is playing golf into the ocean and growing tomatoes with Colleen, but I can imagine it to be the sound of your laughter.  This morning I heard your son laughing in the other room.  It was the most amazing sound of baby giggles.  But it was also solid,  joyous, sustained laughter, and I thought of you.  Wherever you are, Tim, keep laughing, keep Col laughing, and I’ll do the best I can to keep your legacies laughing, until we are reunited.

All my love, always,

MaryBeth

Photograph in Music (Alternate title: I’m not Dead)

I am falling behind.  I have a hundred blog posts in my head and half started, but this one was longing to be written.

This weekend I officially joined a fitness place, and went to a class Saturday morning.  I like it because the music is good and motivating and they tell you what to do constantly so you don’t have to think.  During the floor exercises, when I was lifting weights I saw myself in the mirror, and somehow in the combination of music, adrenaline, and tingling of my soft muscles that had gone unused basically since November, I looked myself right in the eye and thought, “You are not dead.”  “I’m not dead.”

I felt like a piece of me, half of me, sometimes more, died last June.  In my post 6 months, an open letter to my love, I mention that sometimes I feel Tim would be disappointed in me.  I don’t think he’d be disappointed in me when I do what I have to do to heal, or to survive, when I allow the kids more screen time than I ever would have “before,” but I think he’d be disappointed in me when I do more of the holding on, the feeling sorry for myself, the wallowing.

Tim had a complicated relationship with death.  I believe now it was mostly a result of not ever experiencing it up really close.  I think he was mostly afraid of it.  Having experienced it up really close, as close as it gets, I can say there is a beauty in the sadness.  This is something I’ve heard from other widows too.  Living up close to death seems to be the only thing that can truly rid us of our fear of it.

But it is a challenge to always look at the positive, look for the good, find the silver lining.  When I hold on too much, is when I think Tim would be disappointed.  When I do things for other people, or for appearances.  He always hated that.  He’d tell me if he could to keep living.  He’d tell me that I don’t have to wait a certain amount of time for anything; that there is no formula; that weeks, months, years from now, he will still be dead.  He’d tell me: Don’t miss out on anything today because you are simply missing me and feeling sorry for yourself.

I can both love Tim, and be alive.  I can stretch, strain, and push all my muscles.  I am reminded of this in music.  And I felt like it was a nudge from Tim that gave me that thought.  It may seem overwhelming how much life I have left without him.  But I have it.  I have to accept that.  I am not dead.  And there is great beauty in that if I can find it.  And live it.

My sister-in-law asked me after Tim died if I hear every song differently now, and I really do.  Every love song has a different kind of meaning by me ears.   All of them.

I really love Ed Sheeran’s song Photograph, and when I heard it the first time after Tim died, I heard it with new ears, and it resounded with me in many ways.

Loving can hurt, loving can hurt sometimes
But it’s the only thing that I know
When it gets hard, you know it can get hard sometimes
It is the only thing that makes us feel alive
We keep this love in a photograph
We made these memories for ourselves
Where our eyes are never closing
Hearts are never broken
And time’s forever frozen still
So you can keep me
Inside the pocket of your ripped jeans
Holding me closer ’til our eyes meet
You won’t ever be alone, wait for me to come home
Loving can heal, loving can mend your soul
And it’s the only thing that I know, know
I swear it will get easier,
Remember that with every piece of you
Hm, and it’s the only thing we take with us when we die….
~ Ed Sheeran, Photograph
If love is the only currency we take with us when we die, then Tim died an incredibly rich man.  He lived big, and loved big and openly, and people loved him back.  So many of us loved him.  He loved life.  And life loved him.  He took so much love with him when he died.
I can only try to live my life so that I can be as rich on the day I die.

more of the beginning

 

In early May, 2017, I had installed the Telegram app on my phone and I had a few contacts, but when I saw that icon, it mostly meant I had a message from three of my close friends (whose husbands are all friends with Tim too) OR Tim.  Mostly, it was from Tim.  It was our primary form of communication if we weren’t together.  We never used SMS texting, and I’m so glad because now I have it all saved.  When he got sick, even though I pretty much spent at least 8 hours a day at his bedside at the hospital, I still Telegram-ed him. I had his phone, and I saw he was getting other telegram messages when I turned it on, but I didn’t read them.  I sent him updates on the kids I knew he’d want when he woke up and could check his phone again.  I poured out how much I missed him, how much I loved him, anything, so that he could look back on it when he was able.  Looking back on those telegram messages, brings that time back in such an acute way.  And before, his last messages to me, they help me remember those last times together, that I never could have imagined were the last.

In my Origin Story post, I talked a bit about the beginning… the weekend leading up to him ending up in the hospital, the trip to the ER with A, getting the kids with a friend and a neighbor, getting back to the ICU, our last moments that night before they intubated him… here is a bit more detail of what I can remember from memory and from telegram…

Here was our last Telegram communication:

Tim: Room is 415

Me:Yes/  Dr told me/  I’m here/  On my way to you/

Tim: I have no white blood cells

All of that is time stamped 6:37 PM, to give you an idea of how fast that typing occurred.

 

Going back in time…. On May 1st he went downtown after work to watch some sports thing with a friend.. he called it “baseball nerd stuff” at Howard Theater.  He was very excited about it.  On May 2nd (a Tuesday) we both worked short days so we could meet with A’s Kindergarten teacher in the morning, then make it back to the elementary school in the afternoon for her Tumbling showcase.  I took A to the bus, then the other two to daycare while he swung by Dunkin and got us each an iced coffee before the teacher meeting.  I was concerned that she wasn’t ready for first grade, I had always been worried mostly because of her age relative to the other kids in her class.  Tim was adamant that she was ready and she would be bored if we held her back, so I said we had to at least meet with the teacher to learn some strategies to support her where she was behind her peers.  I met him in front of the school with the 2 iced coffees, and we headed in.  It was like a date.  After the Tumbling showcase later that night, he pointed out that there were $1 subs at Jimmy John’s that day and we had to go.  He took A to soccer practice, I picked up the other two and we met at Jimmy John’s. A was so excited!  It was a scene.  We had to wait in a huge line with lots of other people while more bread came out of the oven, and they could start selling sandwiches again.  I remember thinking how ridiculous this was as I tried to keep D happy and A&R from climbing all over EVERYTHING, and from whining too much.  Tim chatted with a couple behind us and bragged about how awesome it was to be a dad.   He smiled from ear to ear, with pride at his kiddos.  After the kids were in bed that night he watched the end of the Celtics / Wizards game.  He sent me an article on fidget spinners being a threat to America, and commented that he saw a lot at school that day (on our two trips there!)

On May 4th he first commented on not feeling well.  He said he thought he had gout.  Between 6:30 and 7am he got stuck in the drive thru of the worst DD ever on his way to work, and eventually gave up and drove off without his food and coffee. That afternoon he was eager to get out for a run because he was getting frustrated with the kiddos, and the house being disorganized.

From May 6-7th he scheduled “beer and brunch with Jared” an occassion for Tim and 4 of his closest local buddies to visit the 6th of their crew (the poop group) for a Richmond beer crawl, in advance of the birth of Jared and his wife’s second child.  Before he left he left out the sight word notecards he had made for A, in three piles and let me in on his method of assessing her, with checks, minuses and sad faces.  He thanked me for letting him go to Richmond, he said he loved me, that he owed me one… I sent him updates from A’s soccer game (she scored!), where I was standing in the rain under an umbella with D in the carrier (thank goodness R was at a friend’s house!) He started sending me questions on how we were going to handle “no more babies” since we were leaning that way,  and had said we would make a decision by D’s first birthday.   I was pretty clear on how that should be handled.  He said tournament time next year.  He had a great time with his friends in Richmond, but when he contacted me to say good night he said he was exhausted,  and with “the gout, the sores in my mouth, and the hemerroids… I feel so old and broken.”  I told him at least he looked good.  He said he was too old for this (brewery crawl). The next day when he was in the car with friends heading home I asked how he was feeling and he said “better than you would think!  Didn’t actually drink all that much.”  When he got home, R hadn’t napped, so he and she went straight out to his hammock in the backyard to nap together.

On May 8th, he mowed the lawn.  He sent me a photo. He was so proud.  He said he was getting quicker, did minor trimming but got to use the new blower.  (I think when I read that in real time I thought “how many new lawn products is he buying?” But I didn’t question him even then, I knew he was having so much fun with the lawn!) That night he took care of Declan while I took the girls to Girl Scouts.  This included giving Declan a bottle, and my pumping when I got home.  He lamented adding more to the bottle and then him not drinking it. We talked about my family and my parents’ health.  On the 9th he sent photos from As soccer practice.. mostly selfies of him with R and D on the side lines… and mentioned the hemerroid pain.

May 12th was a Friday and his last day at work.  We talked about his outfit choices that week and the compliments he got at work.  (He had just started Men’s Stitch fix and was loving it.) I went to Muffins for Moms at the school for Mother’s Day and sent him pics. He messaged me at 1:35 that afternoon that he was going home.  He wanted to lay down – again complaints were only about hemerroids. He typically left work at 2:45pm every day to pick up Annabelle so this wasn’t shockingly early.

May 14th, Mother’s Day, was when he first mentioned a fever.  He had one, then he didn’t.  He told me he loved me and he was sorry to have ruined mother’s day.  He said he was supposed to make french toast but could only muster the ice cream sandwiches.  He said he promised I would get my weekend.  I told him the ice cream sandwiches they made me Saturday were so good – and how was he feeling?  I sent pics of us out with some friends for ice cream Sunday afternoon at one of his favorite places to go.  At 5:36pm Sunday he told me the fever was back – 101ish.  Thats when I said I really thought he ought to go see someone Monday morning, and he agreed.  That’s when he asked me to go with him.  I said yes, and that A needed to go to her room when we got home, and I was stopping with the kids at Safeway, and did he need anything  He said “Severe pain killer.  You are super mom.”  He also said he thought we needed to hug A more. Just because.

IMG_20170513_192411.jpg

On Monday, the 15th, our conversation was about getting ready to go to the doctor’s office. I thought I passed out in the waiting room, but I have messages with him while he was back there.  “She thinks its the infection in my mouth/ To make an appointment with Dr .Z (our dentist)/ For the end of the week/ She’s going to give me a foam for hemerroids / Since it wasn’t black and blue she doesn’t think it’s thrombrosis (He had clearly been googling/ WebMDing).  I asked if they thought the mouth infection was what was causing the fever?  He said Potentially yea.  I asked if they were giving him abx and he said yes.  We went to Target to get the antibiotics.  He said he was freezing.  Then shaking.  We went to Target, I got him home and in bed.  He never did use that foam.  He took the antibiotics.  I went to work.  He got A from the bus stop, and let her watch a movie til I got home with the littles. She had speech therapy that night. I had a lot of proposal work to get to at work after the morning doctor trip.  I  constantly ask myself why I hadn’t just stayed home with him that day. I had absolutely no clue.

The next day was the 16th.  A day I will never forget.  At 11:02am while I was at work I said: OMG next Friday D is 10 months! (I could never have imagined that D’s dad would die when he was 10 months old.)  At 1:33pm Tim said he vomited. I told him I’d come home to get A off the bus if he wanted – let me know… at 2:18 he said it was ok, he was going to get up and shower.  At 2:25 he said please come home.  I responded with “309 eta/  I think we go to the ER this time.”  I called him on my drive home.  I called my boss and told him he needed to get my deputy help with the proposal ASAP.  I grilled Tim on his symptoms while I was waiting for A at the bus stop… hemerroid pain he said was better, no mouth pain…lymphnoids didn’t seem as swollen, but sweating, fever, vomiting… I asked him if he’d been talking to his Aunt (because she’s a Dr and he’d spoken to her the previous year when he had an infection.)  He said no.  He said he was looking for socks… and brushing his teeth… next messages were the Room number and the white blood cells.

I described much of our last moments together in his ICU room at Fairfax hospital. Some other things I remember:

The hematologist came in while he was off for the CT scan.  My initial thought when they took him for the CT scan was how dangerous to finally be sitting, not responsible for the kids, or even for Tim – and alone with my own thoughts.  I texted his parents, my mom and sisters, my three close local friends (one of whom was with my kids and one who worked at that hospital and came back that night to be with me before  I headed home, the third happened to be on vacation in California), my three (very not local) best friends from college…

I didn’t know what a hematologist was.  They didn’t use the term “oncologist”with me that night though thats what he also was.  They already suspected cancer.  But I still had no idea.  When the NP told me things would get worse before they got better I was a cheerleader… I said we’d tackle it, I said we understood, right, Tim?  He said “well I’m not excited about it” (being intubated.)  I had no idea what the NP was telling me.  I had no idea that these crazy cheer leader go-get-em-we’ll-kick-this attitude I was portraying was the last conversation I’d ever have with my husband, my best friend, the love of my life.  When they gave him a catheter he really didn’t like it.  As a joke, I told him not to rip it out (because this was a problem my very-bad-patient-dad had been having) and I think I really freaked out the nurses.  So I had to explain.  They were both young and unmarried and said they thought girls married men like their dads.  I said I couldn’t have married anyone more different from my father, and my sister too.  Tim smiled at me through the oxygen mask.  I told him my friend who was watching the kids messaged me that she’d never changed a boy diaper before then (she has 2 daughters) and he asked why she’d never changed her sister’s son’s diaper!  There are times when remembering these last conversations burns me.  Why didn’t I tell him how much I loved him?  How much he meant to me?   How much I loved our life together? That I wouldn’t change any of it for anything?  Why couldn’t I have said all those things and more?  I had no idea.  I couldn’t imagine it was my last conversation with him.

Continue reading “more of the beginning”

What he didn’t know

The ultimate silver lining is what Tim did not know.

There are many many times for me, when how completely unprepared for this we were is crippling.  Emotionally, and also practically. There is an incredible amount of paperwork that comes with death.  I am not through it.  I’m probably not even close.  I’ll save that for another post.

When I was in the hospital from May 16th to June 11th, there were many times when I pleaded with him: If this is it.. if this is the end… just sit up and talk to me one. last. time. Please. Let me hear your voice again, let me tell you…

But that plea was entirely selfish.  I know that, and I even knew it then.

If he had woken enough to talk to me when he was hooked up to all of those life support machines, he would have been so afraid.  He would have had to face the possibility that he would die.  He would have had to think about all the things that he would miss.  He would have realized that…

  • he would not see D’s first birthday
  • he would not see A’s patriotic performance or her last day of Kindergarten
  • he would not see R’s 2 end of the year recitals
  • he would not see his children again
  • he would miss so many firsts, so many lasts, graduations, dances, proms, recitals, GAMES, meets, performances, back-to-school nights, donuts with dads, Watch DOGS days, dates, anniversaries, weddings, grandchildren/new babies, our retirement plans…

He would realize that I would have to live this life we built together, without him.

The knowledge of his impending loss, of our loss… it would have shattered him.

 

Tim did not even know he had cancer.  It was a week in the hospital before I found out.  He knew he had no white blood cells.  He knew he had pneumonia.  But people recover from pneumonia all the time…. But he hadn’t reached out to his medical family members with questions.  Which tells me he had no clue how bad things were.  He was asking me about his phone charger, and whether I had brought a book.

When I had to accept that it was over, I briefly thought it would have been better if it had just happened that first terrifying night, so he wouldn’t have had to go through so much – all the transfusions, surgeries, machines, indignities.  Certainly it would have been better for him.  Maybe for me too when you consider the medical bills, etc….  But I quickly realized, no – I needed that time.  That time that he fought so hard, every day – it was his last gift to me.  Had he not been so young, strong, and healthy, we would not have had that time.  Had he not kept himself so healthy, his heart and lungs would not have survived as long, even on ECMO.  I needed that time to really understand what was happening, to process, to pour out all my love to him, to adjust, to be ready to hear those words when then came “Tim is dying”, to realize I could survive it.  Somehow, I will survive it.

It is the ultimate silver ling.  It is a comfort to me, and I hope to others who loved him, all the things he did not know.