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.

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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”

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!!!)