This is us – Jack’s death

Last year I wrote a bit about the TV show This is us.

Spolier alert:  Not appropriate to read if you have yet to watch the 2/4 episode of This is US.

Sunday night, after the Superbowl, it was the episode where you finally find out / see how Jack dies.  Tim had asked me over and over when I watched the first season, “do you know how the dad dies yet?”  The show was too much for him, too intense.  It’s amazing to me to see this same anxiety in his daughter.  I took the girls to the secondary school’s “The Little Mermaid” on Sunday, and in the “awkward” love scene parts A asked me if we could leave… then at the end told me it was so amazing, and I was the best mom ever for taking them!  Just like her father, she could not handle awkward, or anxiety, and uncertainty.

Jack’s death was harder than I expected.  I mean, I’ve known for 2 years that he will die.  But it’s TV, I expected it to happen dramatically: in a car crash, somehow related to his drinking… even when I knew it was a fire, I thought for sure there was a connection.  But no.  He was a hero in the fire and survived it. And then.  He died a very ordinary death.  The heart.  The lungs.  The widow maker heart attack. The last conversation with his wife:  joking, teasing, ordinary.  In the hospital where his son was born. (and daughter)

I wrote before about not making comparisons.  All of our bad stuff is bad, we don’t have to say what’s better or worse.  And yet, I think it’s only human nature to “blink” – make those snap judgments, and feel that quick comparison.  It’s what I felt when I watched This is us.  There were so many similarities.  And the differences were/are up and down.  The ages of the kids.. pros and cons… the suddenness.. pros and cons.  But at the end of the day, it’s still dealing with the loss, and being strong for the kids.  Being able to tell the kids… knowing the right things to say.  And being able to feel all the pain of it.

Someone in my hot young widows club posted about the struggle of seeing people post about how hard it is for them to suffer TV characters’ deaths.  About how we live devastation every day, we don’t just watch it once a week.  And I get that point of view, I really do.   Mine though is usually along these lines… when people tell me they’ve never experienced a devastating loss… or even that their children haven’t.. my first thought is, with all sincerity “good for you!”  I’m really just so happy that the most difficult loss they’e had is Jack, from This is us.  And I am grateful to the show for making people feel all the feels.  This episode was surprisingly difficult.  But necessary for me.

“…Take the sourest lemon that life has to offer… and turn it into something resembling lemonade.” ~ This is US

Day in the Life

DITL was a term in one of my jobs.  It was even the nickname of one of the guys I played softball with… yes, pre-children I played a lot of work co-ed slow-pitch softball!

Today, two-thirds of my children threw up… one in the car on the way to school, one at the dinner table.  They have incredible gag reflexes.

Today, after the months-long process of calling MetLife critical illness insurance to check on my claim, calling doctors, getting a friend who works at the hospital to physically stalk doctors, getting my company benefits administrator to call, fax information, seeking clarification, giving my claim or certificate number, my DOB, address and contact number should we get disconnected…over and over and over again… today, it got to me.  Today, I found myself shaking with rage, and then, as close as I’ve ever come to bawling my eyes out at my desk at work.    It’s dirty money.  Insurance money.  That’s how it feels.  Critical illness, or life…insurance feels like dirty money.  I remember one life insurance check specifically stating “death benefit” and it made me feel like I was going to vomit (which I know never to do in front of my little gag-masters.) But I survived, I got through the day. (Stay tuned because Critical Illness insurance is still not resolved, even though Tim was critically ill close to 6 months ago.)  I even finished a compliance training.  I drove home.  I played with A, R, and D.  We read books.  We talked about the sunny, stormy, and surprising parts of our days.  I got everyone to bed. I listened to a podcast while I made egg salad and did the dishes.

And you know what?  I conquered the car seat cleaning.  That was always Tim’s self-appointed job.  There have been many car trip puking incidents… and on each one I handled the cleaning of the child, and Tim handled the cleaning of the car seat.  Once, on our way to Richmond in 2015, we pulled over to the side of the road IN THE SNOW, jumped out, I cleansed and changed R, and he cleansed the car seat.  We were back on the road in record time and Tim gave me a huge high five and was incredibly proud of our efficiency.  Never did I imagine that was something we would get good at together as a couple, as a team.  But we did.  We were quite a team.  We handled a puking in the car seat child with the best of them!

Tonight, I reinstalled the clean car seat cover, and the car seat back into the car.  I didn’t want to, but it was a necessary evil.  I missed him.  And not just because it was a gross annoying job I didn’t want to do, that he did valiantly without complaint…. but because I just plain miss him all the time.

This is a day in the life of a 36 year old widow with three small children.   Thanks for asking.

This is Us

Last year I binge watched the first season of This is Us.  Tim started it with me but eventually found it too intense.  He kept asking me “do you know how the dad died yet?” He wanted to know, but he couldn’t handle the suspense.

A friend and I decided to get together at my house every Tuesday night to watch it this year.  I knew what we were getting into.  So did she.  We were watching a show that is at its core about 3 kids whose dad dies, and how it affects their lives, going back and forth in time.

In the first episode of this season, Rebecca, the mother who lost her husband, talks to her adopted son, Randall, about how he (the husband, Jack) was the one to push for the adoption.  “Sometimes in marriage, someone needs to be the one to push to make the big moves… and oftentimes in our marriage, yes, it was your father.  Our marriage wasn’t perfect, it’s true.  But none are.  And your father wasn’t perfect either, but he was pretty damn close.  As close as they come.   He pushed this stranger on me and that stranger became my child, and that child became my life.  He became you.”  That’s how I feel especially when I remember those days in the hospital when I told him every day that even if I had known this would happen I wouldn’t change a thing…  because I knew if he could talk to me, and knew what was going on that he would apologize.  Unnecessarily, but he would have apologized.  Because kids, 1, 2, 3… it was all him pushing. And now – they are my life.

In the Halloween episode this week, they cover when Rebecca’s first grandchild is born.  After, she cries saying “That was one of the happiest moments of my life”and Randall asks her if they are happy tears, she nods, “but also your dad isn’t here.  And that’s just something I’m going to have to deal with for the rest of my  life –  the happiest moments will also be a little sad.”  It rung so true, because I remember thinking that exactly this summer, and I am pretty sure I said those exact words to my sister.

It was a tough moment watching that episode this week, it was so incredibly close to home.  And I know it was for my friend who watched it with me.  But I reminded her – we knew what we were getting into here.

When I watched the final episode of Season 1 last year, Tim had already gone to bed.  There is a big fight scene between the two main characters, Jack and Rebecca, where Rebecca asks Jack what he loves about her and he can’t answer.  In the morning, he wakes up and has a very moving speech before he leaves for his friend’s couch for some space.  Tim and I had 3 kids.  We didn’t devote as much time to each other, to our relationship, as either of us would have liked.  I went up to bed after watching that episode and Tim rolled over to greet me when I climbed in so I said, “Tim, what do you love about me?”  I couldn’t tell you honestly all the words he used at that moment, but I can say this: He did not hesitate to answer, and he listed many things.

It’s very hard to know who I am right now.  I am many things.  There are many things I am not.  Someone asked me recently if I felt like I’m living a label.  Last weekend, a fellow widow commented on not being the old her… and another reminded us that we are still the person that he loved.

It is incredibly powerful to remind myself that however lost I may feel right now, without that person who pushed me, however difficult it is to swallow that every joy in my life will be hand-in-hand with sadness… I am still the woman he loved.

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.


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”

Widow’s Support group

My EAP counselor suggested I go to an in person support group at some point.

While I don’t necessarily think we were well matched, I took the advice to heart.  When I asked her how I find one, she was particularly unhelpful.  She basically said to look for one on my own… and they are usually associated with churches.  That was discouraging. But then I saw an advertisement posted for Haven of Northern Virginia in the waiting room of the girls play therapists’ office.  There was a contact email, so I sent an email immediately.  They contacted me and told me about an upcoming widow’s support group – 6 weeks and free! I read about the organization and it sounded pretty perfect.  Unfortunately, the very first meeting was the day of Tim’s New York Celebration of Life, but they let me join anyway.  I was sorry to miss the very first week when everyone shared their stories.  I lined up childcare for the 5 Saturdays.  This past Saturday was my first group meeting.

I had people ask me if it was something I needed, if it was something I’m ready for… at the end of the session, one of the women said she hoped I would return.

This made me smile.  Maybe it was Tim’s rule following tendencies rubbing off on me, or his inclination to trust the experts, but it honestly never occurred to me not to return, or not to simply trust the process.

I don’t think I am going to enjoy it, but I simply recognize it as something I should do.  One of the things that I should do.  If I were my friend, instead of me, I would tell me to do it.

Early on, they pointed to where the group had written down what they want to get out of the 6 weeks, and I was welcome to add anything to the list.  I just started at it. I racked my brain.  I couldn’t answer that question.  The Hermione Granger in me wanted to have an answer. People had written good things.  Overwhelmed, taxes, the holidays… on and on.  All I could think was “grief” but I  couldn’t formulate a thought around that.

With a day to reflect, I think I realize now that this is just one of those things I am doing for me.  I might not enjoy it exactly, but it’s a self-care thing.

Another thing the EAP counselor told me which really baffled me at the time she said it was that I was so busy, but I really needed to take the time to grieve.  And I just kept thinking “what does that mean?!”  She went on to say that she worried that if I didn’t, I would rush into another relationship. Um, no.  That really turned me off.  However, I think it was based on her personal experience with a similar situation.  I just kept thinking at the time, how do I do that?!  How exactly do I grieve?  Do I pencil it in after the kids go to bed? Is there something specific I’m supposed to do?  Grief is my constant companion.

Grief.  It lives inside of me – in my chest, in my throat, in the pit of my stomach.  I’m just plain sad inside, all the time.  Even when I’m happy, I’m sad.  It’s similar to being pregnant in that whatever you do, you have the baby with you, there’s no separating from that.  The grief, the just plain “I miss him so much” of every single moment, it’s always there.

One woman shared something she had read about the fact that you can’t wait for the old you to come back.  It can’t, it won’t – she is gone.  There’s a new you, and you have to learn to accept her, love her.  I think that really resounded with all of us.  In my head, I’m still always telling Tim everything.  My best friend, my soulmate.  The father of the three small humans that I live with. It’s not just the grief that is always with me.  Tim too, is my constant companion.

People are always telling me I need to take care of myself.  That if I don’t, how will I take care of A, R and D?  So attending this group is for me.  I am taking steps to learn how best to handle the kids’ grief, and the many issues that will come up with them, and with being an only parent.  (Another widow online gave me that term, “only parent” rather than “single parent” and I do prefer it.)  Most of the women in this group do not have children, or dependent children, certainly none have children as young as mine.  So in this group the focus will be on grieving as a woman who lost the love of her life.   So I will “lean in” to the process, give myself over to it.  It may not be easy, but I feel confident it’s the right thing to do, it’s what Tim would want me to do.

Most of the time, I grieve as a mother. I grieve their loss, I grieve the loss for them, I even grieve Tim’s loss…when D started walking and he wasn’t there to see it. But making the time every Saturday to go to this group, will be about my own loss. I go through my days, especially at work, pretty numb all the time. I turn off emotion so I can function. I need to function at my job, I need to function as the sole bread-winner, and when I’m not at work I need to function as their mother. I am always in charge as their mother. For an hour and a half on Saturdays for 5 weeks I can let someone else be in charge. They can moderate the group. I will move through the grief however it happens. It will be a time I can shake off the numb and let myself feel.


The hospital time… “Love is watching someone die”

I spent every single day from May 17th through June 10-11th at Fairfax Inova hospital.  25 long, full days, in the cardiovascular ICU.

For the most part, I am glad that most people did not see him then.  He would not want anyone to see him like that.  While he wouldn’t have wanted me to see him that way either, I know he wanted me there. He made that clear in our last moments talking together.  And I also know, because I would have wanted him there for me. When I was in the hospital for all three deliveries, I insisted on him staying there with me throughout… even when we had another child or children at home for whom we needed to get childcare.

So my goal is to spend some time writing about our hospital time.  Using my trusty notebook that I scribbled away in every day while I was there.  It was 25 days.  It was a lifetime, and it was also the blink of an eye. I’m hoping I can do the time justice for the kids to read about later.  More to come… these may come in time, interspersed with some updates on the now.

This Deathcab for Cutie song was brought to my attention by an online widow’s group.  It’s very powerful to me.   Very close to home.  I pretty much lived it.

“What Sarah Said”
And it came to me then that every plan is a tiny prayer to father time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I’d already taken too much today
As each descending peak on the LCD took you a little farther away from me
Away from me

Amongst the vending machines and year-old magazines in a place where we only say goodbye
It stung like a violent wind that our memories depend on a faulty camera in our minds
But I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the TV entertained itself

‘Cause there’s no comfort in the waiting room
Just nervous pacers bracing for bad news
And then the nurse comes round and everyone will lift their heads
But I’m thinking of what Sarah said that “Love is watching someone die”

So who’s going to watch you die?..


Tim’s Origin Story… Or Maybe it’s mine

Re-visiting the “What Happened” Caring Bridge post

I thought it most appropriate for my first blog post to be the post I shared on my husband, Tim’s Caringbridge website from early June, 2017.  Tim went into the hospital on May 16, 2017, and on May 18th our friends posted the first Caringbridge journal update.  By that point, my whole life had flipped upside down.  Over the weeks that followed friends and family near and far were following our story on Caringbridge and using it to sign up for ways to help us… but I realized most were still confused and had more questions.  Most questions I could not answer, but I felt that many were still left wondering “what happened?” and I could respond in a more comprehensive way. So I told our friends that I was going to write a “What happened” post.  And one of them said she liked to think of it as Tim’s origin story – as a super hero would have.  So I made the title “What happened?  Tiny Tim’s origin story.”

It turned out that that post was pretty popular with 178 “hearts” and 69 comments directly on Caringbridge  – reaching countless more through all those who shared it on social media.

Now, as I sit down to write this blog….since my life has been torn apart by this… this train wreck that came crashing through and changed my world forever… now, it feels like it’s my origin story.

“What happened?” (Tiny Tim’s origin story)

Journal entry by MaryBeth Gaige — 6/4/2017

“What happened?”
It’s probably the question that I get the most. And I get it. How did I go from having my fun-loving, kiddo-loving, running, weight-lifting, lawn-tending Husband by my side, to holding his hand every day in a bed, fighting for his life in the cardiovascular Intensive Care Unit of Fairfax Inova Hospital?I thought I would try to write a post in an attempt to answer that.The executive summary I usually give is:
He got sick out of nowhere and now has been in the ICU in critical condition since 5/16…He got b cell lymphoma (in his spleen) and we had no idea, wiped out his immune system. Then got a bacterial infection and without a way to fight it, went into septic shock followed by multiple organ failure. And suffered a brain hemorrhage from everything else going on. He’s on life support. Taking it one day at a time…Here’s the longer version..
First, what led up to the hospitalization from my point of view:Starting on Friday night before Mother’s Day, Tim was complaining of bad hemorrhoid pain. This wasn’t something he wanted to tell everyone so when I cancelled my manicure plans Friday night and through Sunday when anyone asked I just said Tim wasn’t feeling well. To detract from having to tell them he was having hemorrhoid pain I usually made some jokes about a “man cold” or simply said he wasn’t feeling himself.
The only thing Tim complained about all weekend was hemorrhoid​s, but it was clear they were bad because he didn’t really want to hold the baby and he didn’t leave the house although he did get up and join us for meals. I asked him to see or call the doctor but he said that he’d had them before and just knew what they would tell him. I didn’t push it. By Sunday night though he had a pain on his right side in his chest and a fever, and felt swollen in his neck. That didn’t sound connected to hemerrhoids to me, so I said we had to go to the doctor and he agreed to go Monday morning. He asked me to take him and so I took him Monday morning to the walk-in clinic at his regular doctor’s office. I had been up with the baby with near-newborn regularity, so when he went back to see the Dr, I actually fell asleep in the waiting room. He came out and I popped up to see what was up. He said he got two prescriptions. One for a special foam for hemerrhoids, and the other for an antibiotic for a tooth absess and had to make an appointment with our dentist at the end of the week once the antibiotics had set in. I was surprised. He had had a tooth ache about a week before, pulled out a popcorn kernel and never mentioned tooth pain again! I didn’t ask if he had a rectal exam; I didn’t ask if they did blood work. I did ask about his swollen lymphnoids in his neck. He said he’d been told that was a feature of the tooth absess. Well, ok then. We went to our Target pharmacy. Tim was extraordinarily weak. I assumed that was from fever and a bad infection and we needed to get those abx in him! Got his prescriptions, picked up a lunch for me and got Tim home and settled up in bed, and I went to work. That evening he still had a fever, but with the kiddos we know fever is highest at night. When the next afternoon (5/16) he woke up, had some yogurt before abx dose #3, and called me to say he vomited, still had fever and sweating – I said we were going to the ER. I got home and he really wanted to shower before going, so I let him do that while I got Annabelle from the bus then grabbed him to go to the local Inova ER on Ox Road. Again he was weak…wanted me to do all the checking in and most of the talking to nurses and doctors. I had Annabelle there so I was also trying to keep her occupied with worksheets.
After a slow-pace intake, things moved fast after blood pressure and blood work. He was pronounced hypotensive (abnormally low blood pressure) with septic shock. I heard the ER doc tell him, that it might sound like he was over-reacting but he was going to send him via ambulance to Fairfax Inova Hospital ICU. The nurse told me one person could ride with him in the ambulance with a meaningful look at Annabelle. Then said she recommended getting my daughter with a babysitter and meeting Tim there. I said I needed to pick my other two kids up anyway. Tim asked if I was going to the hospital. I said “Of course!! Let me just get the littles and get them all home with someone.”
Fortunately, as you all know by now, we have an amazing village, so a friend and then a neighbor took over at home for the night and I got over to the hospital. On my way, the ER Dr called me with his room number at the ICU. After I parked and asked directions to the ICU, I got a text from Tim with his room number and then “I have no white blood cells.”
When I got to his room they were about to take him for a CT scan. He told me they were going to test him for HIV. He said he should have had me bring his phone charger. He asked me if I brought a book. I asked if he wanted the TV on, I looked for sports, but he was happy with HGTV. Following the CT scan, we were told he had pnemonia in both lungs, and they were likely going to need to intibate him. He had an oxygen mask and it was getting harder for him to breathe. He told me he was so tired and wanted to sleep. That’s the last thing I remember him saying to me. We spoke to a Hematologist who said he would want to get some bone marrow to test. The intibation came on quick, a lot of people in the room, and it was scary​. In the night they called me to consent for kidney dialysis (CRRT) and as soon as I arrived Wednesday morning (5/17) they told me his lungs and heart were failing and I had to consent for ECMO (and a million other things). And that people needed to come.What we know now:

After over a week in ICU, Tim was diagnosed with Splenic marginal zone B-cell lymphoma (SMZL) via a Flow cytometry. SMZL is a rare malignancy involving the spleen, bone marrow, and frequently the blood. This wiped out his immune system.
He had a rectal absess (apparently very common in 30-40 year old males) which he mistook for a hemmeroid, and when it ruptured, it caused a bacterial infection which we could normally fight, but sent Tim into cardiogenic and septic shock with severely low oxygen in his blood, and acute respiratory failure. This also caused acute kidney injury, and disseminated intravascular coagulation (blood not behaving properly) as well as acute liver injury caused by insufficient blood flow to the liver.
On his fourth day in the hospital, a brain CT revealed a left frontal intracranial hemorrhage (which correlated to why he wasn’t able to move his right arm) cerebral brain compression and intracranial hypertension.

Basically, this nasty cancer attacked his bone marrow and blood, his blood got an infection that went everywhere and the bad blood mucked with everything. His medical care has been the best anyone could hope for, and yet he doesn’t just have one or a couple things wrong. He has all the things!! I think every type of medical specialist has seen him now! Every day is a balance to try to find the right mix of life support machine settings, tests, drugs and actions to save him. There are so many things wrong at the same time, and so much is interconnected, it’s a constant balancing act.

Tim is as sick as it is possible to be, but every day he’s fighting. Thank you for reading all of this. Thank you for caring, and for loving us. Your support is felt! Keep all the love, thoughts, prayers, vibes coming. We appreciate it all!

All my love,
MaryBeth (and Tim!!!)