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”

The end

Re-visiting the “Warrior Tim” Caringbridge post

My CaringBridge post from June 11, 2017 received a great deal of attention – even more than the “What happened?” post.  That is when I had to tell everyone who had been following on CaringBridge the news that I needed them to know, but I so hated having to share. I will share it here below.

That morning is becoming blurry.  I want to write down what I remember.  At the time, I knew it was one of the most critical times in my life.  I could feel, even as I was living it, how important every moment was, how every decision made had to be done with precision.  And I was unwavering.  As I lived it, but especially as I look back, I thank Tim for that.  I thank him for being so passionate, so opinionated, and so open with me on everything all the time, that even in things we never discussed explicitly – I knew what he would think, what he would say, what he would do.  It allowed me to make all the decisions I needed to make in short order, if not easy, at least clear.

The “friends of Timmy” supported me and posted every day – sometimes even twice a day.  So the lack of post on Saturday, June 10th, was likely noticeable to those paying attention.  And it was significant.

On Friday, June 9th, I felt things getting worse.  No one said it to me, but I had my little notebook that I kept.  Each day I went to the hospital, I wrote down everything…. all of Tim’s medications and their amounts, regularity, etc. Every action taken by the medical staff, every reaction Tim had.  Friday he was needing more and more blood products.  More were needed, more were ordered.  It was similar to his early days there, not the more recent days.  I felt the difference.  I felt the staff waiting for him to improve.  I felt him not doing that.  As I was leaving Friday evening, the nurse told me that they were waiting on the Intencivist (ICU Attending Doctor) to sign off on authorizing reaching out beyond the hospital blood bank, because there was a blood shortage. And they were out of platelets. That was a moment that brought up many thoughts and emotions…that I mostly tamped down, assured myself they were doing everything they could and headed home for bedtime.  During D’s bath, right at turnover the day nurse called to tell me Tim was going to get the platelets. I thought it was sweet of her.  Later the night nurse told me that his numbers were not improving and he was continuing to need blood products through the night.

Saturday morning was the National Capital Region girl scout day at National’s Park. I had bought tickets for Chief and A. After seeing them off to the game and ensuring my sister-in-law was set with R and D, I headed to the hospital.IMG_20170610_075823.jpg

Things felt much like they had on Friday.  Then, my favorite intensivist came to see us.
Across Tim’s bedside, he told me to have people come to Woodburn and donate platelets. He had gotten them to give up the last bag to Tim. He said that the Rituxan had had a positive effect, and they seemed to have gotten the lymphoma under control for the time being… But all the side effects…even Tim’s tiny inching up immunity was causing him problems with it’s response – “making him sicker.” This was something he had told me could happen the night before – when my internal response was “how is it possible to get sicker than this?…”

Then he asked to speak to me in the hall.  Away from Tim’s bedside, my favorite intensivist said that he’s going to have palliative care come talk to me. He apologized for not doing it sooner. He said he’s too invested. He’s trying everything. All the hammers are down. He said he could even get pulled off Tim’s case because his colleagues say he lost his objectivity. Finally, he said “I  wouldn’t be doing my job if I didn’t tell you…. Tim is dying.”

I had to re-read the text and telegram messages I sent that day, to get the above all right. That last sentence, I didn’t send to the group I sent updates to for CaringBridge.  The group that included Tim’s closest 5 local friends known (to themselves and their wives) as “the poop group.” I did send it to my family.  Despite leaving out the last sentence they understood.  This could be because they have a sideshow telegram group without me… and because one of the members is a therapist at that hospital.  I have to believe she would have explained the severity of what I was saying to the others.  OR maybe they didn’t need it.  Either way  – they understood.  And every one of those 5 guys showed up at the hospital before I knew it.  And almost all the wives showed up at my house with their children, so it was a big party day for my kiddos!

My favorite intensivist had so much sadness, and so much guilt that he hadn’t treated me the best that he should have.   But he did.  He was my favorite for a reason.  He spoke to me in a way I could understand, more than the others.  He learned about my background and education – and spoke to me in exactly the way I needed.

At the end.

Those words.

If I had to hear them, I am so glad I heard them from him.  I heard them at the exact moment I needed to.  Not too soon or too late.

Those words spurred me into action.  To get folks to my house to be sure my sister-in-law and the kids were set, to get Chief back to the hospital as soon as he got home from the baseball game. To communicate the urgency to anyone who wanted to come.  And come they did.

The palliative care doctor was also amazing.  She lives in my neighborhood.  Has a son with the same name as mine. Said she felt like she was looking in a mirror.  She spoke very softly.  She was very understanding and compassionate.  There was one thing that she said that helped me more than anything.  She said apart from religion, she was a spiritual person, and she had seen much in her job – including a mother wait until her son got there from Afghanistan, then pass 5 minutes later, and that if I was meant to be there I would, and if I wasn’t – I wouldn’t be.  She said that I could camp out there, but if I wasn’t meant to be there – it could happen while I was in the bathroom.  If that happened, maybe Tim didn’t want me to be there for it.  That helped me feel at peace, and spurred me into action.

When Chief got to the hospital, we went to a room to speak to the Palliative Care doctor again.  My sister joined us for support.  Like me, Chief was there every day and always speaking in the most positive terms, rooting for a full recovery, talking about what that would include.  And yet,  like me, you couldn’t be there every day and not understand how bad things really were.  He agreed with me that we couldn’t make Tim suffer any more if there was no more hope.  We called Tim’s mom, we got the process started with the Red Cross to reach Tim’s brother.  His friends came.  When they left, I asked if they had said everything they needed to say.  I asked my sister to go home and help with bedtime… not that it was entirely needed, there was a huge crowd at the house!  I asked those at the house to keep A up.  When I finally brought myself to leave, I drove Chief home.  The littles were asleep.  I got A up to bed.  She had been asking a lot of questions lately.  Particularly, she wanted to know when she could go see Daddy.  I didn’t make any promises, but I did say when he got to a different part of the hospital – not intensive care – they could go see him like they saw me when D was born.  I told her that that day, for the first time, the doctors told me that Daddy might not get better.  Daddy might not be able to come home. It was the only thing that I could do to prepare her.

After she went to bed, things mostly seemed in order, so I wanted to get to bed fast.  I got great hugs from my niece and nephew.  I went up and climbed in bed, turned off the light.  Then my mind started racing.  I’d been pregnant three times before.  I didn’t think I was, but I couldn’t be sure I wasn’t.  I jumped up and ran to my bathroom and frantically searched under the sink until I found one – a pregnancy test, with June 2017 expiration date!  I took it and waited.  If I was, I had to be able to tell Tim.

Fortunately, the test came back “Not Pregnant.”

I went back downstairs, because I just had a feeling I might get called to the hospital in the middle of the night.  I asked Chief, if I was, did he want me to wake him.  Then we talked to Lucas.  He understood what we were telling him.  I went to bed.

Just before midnight, I heard D.  I went in, nursed on one side, while nursing on the other side the phone rang.  It was the nurse practitioner. She said a lot of words.. “I’ve had to come all the way up on…   we’re all the way maxed out on… I’m trying… I might not be able to.”

“I understand.  I’m coming.”

I got D settled back in his crib.  I texted Chief. I got dressed.  I went to the basement to get him, past many sleeping people in my house.  Just before I got to his bedroom door, he texted me back. I texted him to meet me in the foyer.  I got my shoes on, my car keys.. looked in the closet for a cardigan.  I couldn’t find anything of mine, so I took Tim’s BU zip up, even if it’s huge on me.

Chief and I drove to the hospital as fast as we could safely.  Not knowing what we would find when we got there.  I told him, if Tim was still alive when we got there, we would not let him suffer anymore.  We couldn’t let him go fighting every second, hooked up to every machine possible.  Chief agreed with me.  Frankly, I think I could have told him I was going to get naked, paint myself red, and dance around his hospital room when we got there, and he would have agreed with me at that time.

When we arrived, the nurses explained to me everything going on… so much support, more than ever – maxed out on every single life support machine.  I asked the nurses to get the doctor.  The doctor working was the one we had when we first got to CV ICU on May 17th.  We knew each other by then.  I spoke to Tim.  Chief spoke to him.   The Doctor arrived.  Told me that they were trying everything to keep Tim  alive until the morning, so the family could be there, but he wasn’t sure he could do it, which was why he called me… but he would keep trying.  After a quick glance at Chief I said, not without my voice breaking this time, “I can not let him suffer anymore.”  Then they explained to me how things would go – that they would push the pain meds hard so that Tim wouldn’t suffer as they removed all the life support machines.  That once they did, it would not be long.

For weeks I had been singing to him the James Arthur song “Say you won’t let go”… it was my way of staying positive.  Asking him not to let go.  No matter how terrible it was, that if there was a light at the end of a very long tunnel, he would be there for his children… because the alternative was unacceptable.  Because no matter how bad right now was, letting go would be forever.  But on Saturday I had to stop singing that.  I didn’t know what to sing.   So then I just started singing “Stolen” by dashboard confessional because it’s what we danced to at our wedding.  Because it was one of the first songs he had me listen to after we finally started dating!  In that song there are the words, “sleep well.”   I didn’t remember that.  I didn’t recognize how fitting the song was until I sang it.   I don’t even know if, at the time, his dad knew it.  I told him how much we all loved him.  I told him that even if I knew this would all happen, I would not have changed a thing about our life.  I told him he had fought so hard.  He was amazing, and we were so proud of him.  I thanked him – for loving me – for teaching me so much – for loving our children – for fighting so hard to stay with us.  I told him it was okay now to let go, to sleep well.

When they were ready to start removing the machines, the doctor asked me if I wanted to step outside while they did that.  I stared at him.  He said I didn’t have to.  I said “then I’ll stay right here,” clinging to Tim’s hand as I basically had been for over three weeks.  His dad said the same.  After all we’d been through, after everything I was in the room for, I was surprised he even asked me.

When the machines were gone, it was more peaceful.  For weeks, when no one was in the room, I would lay my head down on Tim’s chest, as close as I could get to climbing in that bed with him.  IT provided some comfort, with the sense of touch, that position I was so physically comfortable with, but to listen to the ventilator breathe for him.  The sound of the mechanical breathing.  I could never listen to it for too long.  At the end, that was gone.  And I was just lying on my Tim.  As I had so many times before. And I lied there.  And I cried.  And I just loved him so much.  I tried to send him out of the world with so much love.  And his dad stroked his head.  His dad, who was there for his first breath in this world, was also there for his last.  They told me he would be gone when his heart stopped beating.  At that point, it was too hard for me to tell when that was.  It was quiet.  Finally quiet.  No more machines.  I made the doctor tell me when.  Until then, I just laid on his chest and loved him.

The doctor told me.  The staff were all very professional, but empathetic.  Kind.   The official time was 1:32am.  While waiting for the paperwork we would need to sign, Chief and I took down all the art work from the kids – ours and daycare friends. I called Tim’s mother.

On the way out, I ran into one of my favorite ICU nurses and ECMO specialists.  I had suspected she was pregnant.  I figured if ever there was a time I could point-blank ask someone that it was then.  So I did.  She said she was, and that she had suffered miscarriages so she wasn’t quite ready to tell people.  I was glad I had pulled her away from the other staff to ask her.  I congratulated her; I wished her well. We hugged.  We cried.    I gestured for Chief.  We walked out for the last time.  He stopped at the bathroom.  I sent a message to our friends who had been updating Caringbrige.  I told them I would update CaringBridge myself with this when I was ready.  I drove home.

When the girls woke me up in the morning, I brought them downstairs.  There were enough people there, I laid back down.  D woke up and nursed.  I brought him down.  I had to tell the girls.  I think I will save that for another post.  D was biting like crazy so I had stopped nursing during fully waking hours.  When it was time to go pump, I wrote this on CaringBridge while pumping.  It was the best I could do.

 

Warrior Tim

Journal entry by MaryBeth Gaige — 6/11/2017

No one could have fought more valiantly.
No stone was left unturned in Tim’s excellent medical care.
As Tim’s immunity started to recover it started to fight the bacteria and yeast in his blood and he effectively had another septic shock-like reaction.
Everything started to get worse yesterday. They called me from the hospital and were not confident that with any amount of support (he was already getting every support available to human kind today) they would be able to keep him alive until morning.
At midnight I charged back to the hospital with Tim’s dad. It was very reminiscent of Tim and I charging to that hospital at midnight last summer…only this time I was driving and I was in a different kind of pain.
Tim went peacefully at 1:32 am on Sunday, June 11, 2017 with his father and his wife by his side, holding his hand, talking, singing and crying to him. We told him he was loved by so many. We told him he saved so many more lives with all the blood and platelet donations he inspired. We told him he would never truly be gone because he lives on in our hearts. Most especially mine, A’s, R’s and D’s! He will be with us always! But we knew he was suffering, and no one could have fought a better fight. So we gave him permission now to “sleep well.” (That is a line from the song we danced to at our wedding.)
We will have a celebration of life for Tim when that can appropriately be arranged. Details will be shared here when available.You will want to know how you can help. I appreciate all the support more than I can ever express. I will need support for a long time to come. I am sure the “friends of Timmy” who set up and run this site will come up with ways I can not think of and share.For now, I simply ask, as you grieve, if you knew and loved my Tim, please jot down some of your favorite memories that I can share with our children when the time is right. Now, or anytime you think of it. I will strive to keep his memory alive for them forever. It will do my heart good to read the memories as well.Thank you,
MaryBeth