Why I’m doing This

First and foremost, this is for me.  I thought almost immediately after Tim died that I should blog again. Even if that’s so 2008.  If I have ever had anything to write about, it’s now.  As I’ve started to read the pile of what I call “my sad sack books,” everything suggests keeping a journal.  I could do that, but why make it public?… well because:

Secondly, this is for the kids.  To look back on what THIS time was like.  When they want to.  Or when they think they are ready to. Mostly, I try to talk about Tim as much as possible to keep him alive with us anyway I can.  I try to live in the present, look forward to the future… but there is so much comfort in the past for me, and I imagine for them as well right now.  We talk about the past a lot.  But my brain is not what it once was.  Just ask anyone who has needed me to do something, send some piece of information… I say yes, then almost immediately forget.  People say all the time they don’t know how I am doing this.. as in living my life.  One day, when my children are grown, they may wonder that as well.  Well, I am doing it because I have to.. because of them, with them, for them.  I think that often when it seems like a blessing and a curse at the same time.  The curse, how HARD it is to bear the grief of three other people when I don’t know how to handle my own.  The blessing, that I don’t know how I’d survive the grief if I didn’t need to for them.  It reminds me of the line from that Chris Daughtry song (Home): “I don’t regret this life you chose for me.”

Tertiary, its for anyone else.  Now  – because people ask how I am.  Because many more people THINK about how I am.  For those strong enough to bear witness, I will answer that here.  Later, because this unimaginable life I’m living may seem familiar to someone else someday… and if anything I thought, or felt, or said, or did helps someone else… I’m happy for the opportunity to give back.    I’ve received so much. A friend’s words that have stuck with me are his offer to “compare notes on this impossible situation.” This is a situation that just 4 months ago I could not have possibly imagined.  Yet here I am.  I am proof this tragedy is possible, even if I wouldn’t wish this grief on an enemy.

So here it is.  I will do my best to write as often as I can.  Raw.  Uneditted.  This.

Packing for the beach

Today, I packed for the beach.

It was really, really hard.

It should not have been.  With Tim here I still would have done all the packing.  But this time, I also loaded the car.  That wasn’t hard.  But this time, Tim wasn’t talking to me about whether I had packed yet, or whether I had remembered abc or what time we were leaving, or where was his xyz.

Mostly, it was hard because he should be here.  He should be going to the beach with us. This house that we stayed at last year when I was large-and-in-charge pregnant.  Where we walked on the beach together.  One of our favorite things to do.  And talk about the future.  All the possibilities.  Now I am living a future we never imagined. A future we never discussed.

Everyone worries about me and what I call “the logistics.”  I understand this.  I can take myself out of my life for a minute and imagine what I would feel/ think for a friend if this had happened to a friend and not to me.   I would worry about “the logistics.”  Because in early May  of this year, and every minute before, raising these tiny humans was hard, and exhausting, all-consuming.  And there are so many logistics.  All that is still there, I know.  But it seems completely different now. The logistics are no longer what is hard.  I seem to just know that somehow (and with lots of help from a lot of amazing friends and family) the logistics will be taken care of each day.  I will find the strength to handle the details – the bill-paying, the working, the child-caring.  It’s the sadness and the broken heart that make the future truly unimaginable.

Sometimes the missing him makes my throat close and the air seem so hard to swallow.

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

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!!!)