Four Years Later... and Vows to a New Man

Four years ago, Whitey and I promised each other we would love each other in good times and in bad, in sickness and in health, till death do us part.  

My goodness, how we have been tested on all three of these vows, every day in the past year alone.  

I have reminded myself of these vows that we took every day since we received Whitey's diagnosis.  You think I am kidding, but I am not. Every night before I fall asleep, I look at my husband (usually sleeping) and silently say to him, "This is so damn hard... but my God, you are so worth it."

Whitey has asked me to write about what it was like for me while we were in the hospital.  I have put it off for the past month.  Why?  Because looking back at it, I am not entirely sure that I have processed it all.  How do I put into words the most gut wrenching experience of my life?  Today, I will try.

When we got the call, our lives changed immeasurably.  We were told that the donor was a 32 year old female, who had a stroke during a c-section.  As parents, our first thoughts were, "Did the baby make it?  That is completely awful.  What is going to happen to the father? I cannot even imagine."  And then, the transplant recipient in us whispered, "She was pregnant.  She is not a high risk donor.  She probably has not been drinking or doing drugs for the past months.  This is it.  This is our chance...  Wait.  You are disgusting and bad person for even thinking like this.  Tessa.  You're going to hell." 

In the two days that we were in the hospital awaiting the transplant after the call, this weighed heavily on my heart.  I knew that our chance at happiness and life ultimately meant another family's biggest heartbreak.  What I didn't anticipate was dealing with the feelings of guilt.  I mean, I am awkward even receiving a compliment from someone... To say that I failed in receiving this gift with grace is the biggest understatement of my life.  

Whitey and I had two nights in the hospital together waiting. It was the first time in over a year that we had time away from the twins.  Not exactly the romantic vacation that we had dreamed about, but we took advantage of it.  We held hands, told each other that we loved each other.  Watched Silicon Valley on HBOgo.  Slept in that surprisingly comfortable twin sized hospital bed, side by side.  I didn't want to leave him.  I kept telling myself that it could be the last day I spent with my husband... I needed to make it count.

A selfie taken in the hospital, waiting for transplant.

While we waited, my sister and mother in law brought the twins over to the hospital.  To say hello (and in the back of my mind, possibly good bye) to their daddy.  To give him hugs and kisses. For us to have a family hug.  I kept thinking to myself, "This could be the last time they ever see him.  This could be our last time together as a family."  And then forcing myself to stop thinking like that... and failing.  Because at any given moment, that thought was there, looming over me.

Cuddles with daddy before transplant.

Last family picture taken before transplant.

I realized that during this wait and anticipation, another family was saying their good byes.  But unlike our "maybe goodbyes if things don't go well...." this family was saying their "forever goodbyes" to a girl that they loved.  And so we waited patiently some more, held hands tighter, and gave more kisses.  Spent time together, as the donor's organs were "procured and tested."  The timeline kept getting pushed back, and we realized that it was probably because her family wanted to spend more time with her.  She was brain dead, but at least the machines were there keeping her alive.

The morning finally came, and Whitey's parents walked with us down to the OR. We had all decided ahead of time that they would be there when the surgery occurred. It was 5AM, and every single step seemed like I had concrete shoes on, my body carrying the heaviest heart.  Did I tell Whitey that I loved him enough?  Was a good enough wife to him?  I was so sorry for losing my temper... I'm sorry I ever yelled.  Did he know that he meant the world to me?  This surely couldn't be the end of our story... but what if it was?  If he left me during surgery, what would I do?  The thought of that took my breath away.  Would the twins remember what an incredible daddy he was?   What if this is it?  What if?... I should have... etc.  etc....

Before Whitey got wheeled into surgery.

Whitey with his parents before surgery

I wasn't fucking ready.  This was NOT what I expected our life and marriage would be.  I had willingly signed up for this... I just didn't ever expect that this is what would actually happen.  We are only in our 30s. We are parents to toddlers.  This wasn't our fate, we had so much more life to live.   

The doctors came into the Operating Prep Room one by one.  The surgical team told us that the liver had arrived and looked good.  (Yes, it probably came in the same kind of coolers that we put our drinks in during picnics. It was actually driven over in an ambulance.  Weird. I remember wondering if the ambulance had the sirens on.... ) The anesthesiologists came in and explained to us what Whitey would go through.  "He will be sedated when he comes out... it will take about 7-12 hours.  He will do great."  

Exactly how was he supposed to be under for that long without bleeding out?  How was that even remotely possible?  Machines.  That was the answer.  And really freaking good doctors and nurses.  I had to put my faith in people who didn't know us.   

So in those few moments that we had with our doctors, we made sure to to tell these doctors exactly WHO Matt was.  He wasn't just any old patient.  He is a son, a husband, a dad, my best friend.  We showed them pictures of our family, of the twins.  We told them that he like hiked Mt. Kilimanjaro and Machu Pichu, and likes to play soccer.  We told them anything to remind them that he was special... that he was my special person.  He wasn't in need of this liver because he was an alcoholic.... he had cancer twice in his life, and had gotten HEP C from a blood transfusion when he was 7 because of that cancer.  (In my head I kept thinking, "So don't you dare mess this up...he deserves your best")   

And just like that, it was time to say good bye.  I looked at Whitey, told him I loved him, locked eyes with him again, and we walked out.  He said he would get through this... and mouthed "I love you, too" to me.   And that was that.  I felt like I was going to throw up.  I wanted to run, I needed to tell him one more thing... 

The next 7.5 hours were a blur.  Because it was Memorial Day Weekend, the hospital was running at bare bones staff.  There usually is a surgical liaison to update the family on how the surgery was going, but this weekend, there was no one.  Just me, my mother and father in law, looking at each other.  Furiously typing on our phones, filling everyone in on what was going on. Talking about nothing, trying not to look at the clock.... waiting to hear anything.  

I don't  know why I checked the blog at this point... probably just something to do.  And then I saw this post that he wrote.  http://itisatumor.blogspot.com/2016/05/5292016-post-to-all-while-im-under-knife.html    Of course he did this.  It was SO Matt.  Always thinking of us.  

I also realized something.  There was another man in the OR when we were all talking to the doctors before Whitey's surgery.  An African American man probably in his 50s, was in the surgical waiting room was getting ready for his surgery, too.  I am sure he heard what we were telling the doctors.  In the waiting area a few couches down, there was another African American gentleman waiting.  As the hours drew on, we realized that he was waiting alone.  So, we all started to talk, and realized that we were all waiting on our loved ones to receive an organ transplant... for Whitey a liver, for Johnnie. A, a kidney.  

It did not take a rocket scientist to realize that we were now an unlikely family, all connected by the same donor.  And so we all talked.  For hours, about nothing and everything.  Watching the time go by.  And it helped me significantly, realizing that we weren't alone.  

By hour 7.5, I was restless. We had seen the main surgeon walk down, and tell us that the surgery went beautifully, and that Whitey didn't need any more blood in the form of a transfusion.  We were elated!  And awkwardly asked if I could hug him, and I threw my arms around the very formal, German surgeon.  Luckily, he was nice about it.   

The hours drew on, and no liaison had come down to tell us where Whitey was.  I decided to take matters into my own hands.  I went walking around aimlessly to find my husband.  I started on the top floor in the Neurosurgical ICU, and worked my way down.  I walked into the ICU saying, "I am looking for my husband.  He just had a liver transplant, and I have no idea where he is.  Could you help me out?"  Luckily, the nurses were extremely helpful, and guided me to his floor.  I walked into the Surgical ICU (SICU) and repeated my shpeal... and a nurse kindly said, "Oh my goodness!  No one told you he was up here?  I'm so sorry.  We are running on a short staff.  Mr. White has been here for an hour or so.  He is doing well.  Sedated.  You can go and see him."

You know that feeling when you are going up the hill on a roller coaster, just before you come swooshing down?  Or have you ever had a dream where you're under water and can't breathe?  Or where you are falling uncontrollably?  Or feeling like you have literally gotten hit by a bus?

It was all of that at one time.  My worst nightmare coming to life... because it was at that moment where I saw the single most important person in my life look... dead.  I cannot even begin to explain the feelings... tears started pouring down my face uncontrollably.  There he was... and he looked NOTHING like I was expecting.  When I thought of the word "sedated"... I thought:  sleepy, incoherent, but awake.  No.  He was none of those things.  He was gray, bloated, and strapped to the bed with arm and leg restraints, like a prisoner.  He had a central line in his neck, with four ports and another in his leg.  He had two drains filling up with blood coming out of his stomach area.  Two IVs in each arm.  A ventilator down his throat and strapped to his head, artificially breathing for him every few seconds.  I realized that he must have had a nose bleed in the middle of his surgery... because blood was crusted around his nostril.  It didn't take long to realize that a surgeon's definition of "sedated" really meant, "medically induced coma."

He wasn't moving.  He didn't know I was there... and yet, I talked to him.  I told him how proud I was of him.  How much of a bad ass I thought he was.  I thanked him for keeping his promise and not leaving me.  I told him I loved him... about a million and one times... and again.  Because I did.  I do.  In sickness and in health.  For better or for worse.  Till death do us part... but not that part.  Not today.

A few hours after surgery

Three squeezes means "I love you" in our house.

I saw Matt's parents walk in the room... eyes filling with tears.  I couldn't even imagine what they were thinking.  We kept hearing, "He did great!"  In the back of my mind, I kept thinking, "... In comparison to what?"  But I kept quiet, trying to trust the process.

I saw the nurse walk in with a hazmat looking suit come in, (face mask, gloves and all) telling me that he had to administer a medication to Matt that required me to leave the room.  If the medicine came into contact with the nurse's skin, it would be bad.  But it was okay to inject into my husband's body?  Seriously?  How was that even a thing?  And then it happened.  A man came in to take an ultrasound of Whitey's new liver, and lifted his blankets.  While looking at the screen, the technician went about his business, not looking at Whitey, placing the ultrasound probe on Matt's stomach....and immediately, Matt's face scrunched up, like he was in the most excruciating pain of his life.  His body literally writhed in pain, but he couldn't move his arms and legs... they were restrained.  

It was then that I freaked out.  I yelled at the tech to stop. Yelled.  Told him that just because Whitey couldn't open his eyes and speak, that he was still a patient that needed to be watched... and he had not taken care of my husband.  Mama bear came out in full, claws and all.  The nurse immediately rushed over, injected pain meds into Whitey's IV, and slowly his face slackened. 

THAT is how it was.  It was the most terrible experience of my life... and I was supposed to walk around like everything was okay.  So I did.  I faked my way through life that week.

The next few days were a complete blur.  Going back and forth, to and from the hospital.  Trying to be there for my husband... and trying to make it on time to see my children before they went to sleep.  Updating everyone on how he was.  Literally being pulled in a million different directions, needing to be there for everyone... and somehow failing at every aspect.  My kids were sad that I wasn't home.  They knew something was wrong.   

Whitey was not a joy to be around while in the hospital... or in the weeks to come.  I was told that it was the 1000mg of steroids that they administered to him.  It gave me some answers, but I kept on wondering where my sweet husband (who had never been mean to me a day in our 8 years together) had gone.  

I remember one day in particular.  Whitey's best friend, Blair, came every morning to visit, before I got there.  I appreciated this so much, as anyone in the DC area knows how bad traffic can be getting into the city in the mornings... especially with HOV restrictions on rt. 66.  When I got there, Matt seemed upset with me that I didn't come earlier.  I swallowed my frustration, telling him that it had taken me an hour and 30 minutes to get there with traffic, and another 20 minutes to get parked.  We visited for a while, and then Matt's parents came in.  It was decided that I was to go home, and stay with the kids, while Matt's parents would stay with him, and fill me in on what happened at the hospital.  When I got home, the twins were initially super excited and relieved to see me... but then that quickly turned into "oh wait.  Mommy left us, and we are mad at her.  Let's pretend she doesn't exist." Yep... didn't hurt my feelings at all... in my physically exhausted and emotionally drained state.  (ha!)  I got a call from Matt's parents, who told me that he was finally sleeping, and that I should just come back in the morning, and let him rest for the night.  I was happy with that plan, until I got a text from Matt at 9:45 at night, asking me to come to the hospital, that he missed me, and he wanted me there so that I could hold his hand while he fell asleep.  Well, who was going to argue with that?  I got there at 11pm, and immediately realized that he was in a terrible mood.  He told me that he needed a sponge bath (despite what you have heard.... not a terribly sexy thing...) and that he needed help to use the rest room.  Afterwards, he told me that my breath smelled horrible, and that it was making him want to throw up... in front of a nurse (not embarrassing at all.)  When I told him I was going to leave, it was close to 1:50am.  He started getting upset, telling me that he knew why old people didn't want to be left in a nursing home, because hospitals were lonely, and people went there to die.  He then told me that he expected me to be back at the hospital the next morning, preferably at 6:00am, so that I could talk to the doctor.  I asked him when he expected me to sleep, as I was exhausted and had been up literally for days, and he said, "Well, just figure it out."

I walked out of there telling myself, "It is highly frowned upon to punch a man in the face in the ICU... right?"  But that is what I wanted to do.  Have you ever seen the movie Knocked Up?  There is a scene where Seth Rogen tells his pregnant and hormonal girlfriend, "I know it isn't you who is talking... it is the hormones.... but F YOU hormones!!!"  Well, in our case, substitute Seth Rogen with me... and the words "hormones" with "steroids."

And that is how it was.  Ups and downs.  And so I smiled.  Hoping that things would get better... because we had reached rock bottom.

The second night we were there, I saw Johnnie A.'s brother in the ICU waiting room.  We said our hellos, gave each other hugs, and I actually went to with him to go and visit the man who now shared genes from their donor with my husband.  He was an awesome ray of light, and it was a pleasure to meet him.  He smiled and told me it was comforting to him to hear the conversation we had with the doctors in the OR prep room, and that one day he would like to share a meal with the man who has twin toddlers, climbs mountains, and plays soccer.  I kept thinking about crazy it was that our paths in life had intersected... but how we shared a bond so deep.  Unlikely new family members, profoundly joined by the same donor.  That is beautiful to me.

One day, we also got a visitor... the anesthesiologist that had been with Matt through the surgery came in to check up on Whitey.  Apparently, our conversation with him in the OR prep room before Whitey went under had left an impression on him, too.  He told us that it hit home, when he realized that he was the same age as Whitey, separated by a month.  He told us that he told his wife about us, as she was expecting their third baby in the coming months.  He realized how easily it could have been them dealing with this issue.  He also told Whitey how the doctors and nurses kept mentioning in the OR how Matt was in better shape than most people in that operating room, and that he is sure that Whitey will be back on the soccer field in no time.  That that is why he does his job, and is especially happy to work on cases where he knows where the recipient will make the most of their life.  He was genuinely happy he was for us, and wished us well.  It was things like that that solidified our decision to stick with Georgetown for the transplant, despite the old facilities.  The people were incredible.

Then it happened.  A few days later, I received a message from a dear friend of mine.  She said that she hoped she wasn't crossing a line, but had come across a webpage that might interest me.  It was a GoFundMe page... with a tragic story of a couple's untimely end.  There, before my eyes, I saw their story unfold.  I found out many things.  She wasn't 32, she was ten years younger.  But, the rest of the story added up... with almost 99% certainty, we knew she was our donor.  And the baby had lived.  I saw the picture of her husband holding their newborn.  I showed Whitey the page, walked out of the room, and wept as I walked away. 

I guess when tragic things happen to young people in this area, there was a great possibility that our stories would cross.  I just didn't think it would happen while Whitey was still in the ICU.  But if there was one thing I have come to terms with during this last month and a half?  Time and circumstances do not wait... life happens whether we say we are ready or not.  

I immediately felt horrible.  I was getting annoyed with Whitey's steroid roid rage attitude problem... when I am sure that the donor's husband would give anything to be in our position.  When things got difficult, I had to tell myself, "Grow up. Stop feeling so sorry for yourself in this situation.  This pain is temporary.  You know who you should feel sorry for?..." and I would go back to the GoFundMe page.  

We were the lucky ones of the ICU.  We had forward progress everyday.  Most people there were not as fortunate.

I realize I have written a book during this blog post... and I apologize for the long read.  But, I promised Whitey that I would write this post at one point... and why not be our anniversary? Happy anniversary, honey!  I love you so much... even when you were a complete jerk.  Stupid drugs.... thank God you are being weaned off the steroids.  Luckily, the side effects are wearing off, and my funny, sweet, and kind husband is making an appearance more and more, everyday.  

I will end with this.  To the brand new father, whose life changed so tragically the day before our life began.... thank you. We were given a chance at life because of your decision to donate life.  Our words aren't going to be enough to make you feel better, so, I will make this vow of action and intent to you:

I will honor your wife's life daily, by loving my husband everyday... because I know you cannot tell her in person anymore.  I hope you are comforted knowing that a piece of her lives on with us every day, that a part of her loves and is loved every single moment in our lives.... in at least two people that I know of.  In a time when our country is being shaken to the core by racial inequity and sadness, our three families ( Caucasian, African American, and Filipino American)  have broken those racial barriers... showing us that in the end, while we may look completely different and have different circumstances, on the inside, we were all created equally.  

We are forever indebted to you, and love you for making such a huge sacrifice.  I hope that we will all be able to honor her, by living our lives to the fullest.  I vow that along with Whitey, we will be the best parents we possibly can to Eli and Leila.  We will continue to provide them with unconditional love... and be the best parents we can be to them together. If I ever think that it is too hard, roll my eyes at their terrible behavior, or that life has dealt us a difficult hand... I think of you.  How difficult it must be to figure out parenthood alone... and how lucky I am not to have to do this by myself. Because of you, I will never take it for granted.  

We will continue to do so, everyday. With full intent.  Whitey and I will do this... together.  We will make sure that we make the most of the gift you gave to us, by loving each other, and our family with our entire souls.  We promise we will make your wife proud as she watches down on all of us.  Finally, I hope we get to meet one day to thank you in person.  

Happy four years, my love.  It has been a wild ride, especially this past year.  It has been so damn hard.  And while I wish our journey has been a little bit easier.. but my God... you are so worth it.  I am so lucky to have you in my life, to walk and navigate life every day with my best friend.  But for once... let's make our fifth year of marriage a little more uneventful. I love you.  

We are getting there!  Slowly but surely.