Thirty Days of Mo(u)rning

His and Her bags (ours) in the hospital room. The Green State Lager hat went with Kateri when she was cremated.

It was around 6:30 in the morning and I woke up to the sound of Kateri screaming my name from the downstairs bathroom.  I had been sleeping in the spare bedroom because she needed space in our bed to try and get comfortable… to get some rest.  Hearing her voice, hearing her in pain, hearing Kateri calling for me for help will always be in my head.  I ran downstairs to her holding her stomach as she was hunched over, sitting on the toilet, dealing with pain in her guts… and she had been calling for me for half an hour. This is the moment that things got serious… as if they weren’t serious already.

Kateri asked me to call her doctor… or the hospital… or anyone who may be able to help or provide some direction.  The pain in her stomach was too much to take so I made the call.  After talking to a Doc, we decided to try and get her to the ER.  I got her dressed in warm comfy clothes, started the Jeep, let it warm up, and then helped her outside.  She got in the back seat so that she could lay down… well, curl up and hold her stomach.  Once she was in the car, I ran back inside to grab something… her drugs, a bag, a blanket… I don’t exactly remember.  What I do remember is when I came back out, the door to the car was open, Kateri’s head was hanging over the edge facing the asphalt as she was dry heaving, and she had lost control of her bowels. So I helped her out of the car, held her and walked her to the front door, stripped her of her soiled clothes and threw them into the ice and snow covered back yard, got her inside, cleaned her up, got her into clean comfy clothes… and called an ambulance.  In the moment… I did what I needed to do.  A year later… it destroys me to think about her having to go through that.

This was the beginning of seeing just how fucked up this situation was.  After half the day in the ER, after watching the nurses and LNA’s gag from the smell of her bowels losing all control for hours, after watching doctors poke and prod her while monitors beeped and alarms went off… after witnessing one doctor tell Kateri that she “needs to stop crying” (ya, I hope I never see that dude outside of those walls), she was admitted to the hospital because, from what we understood, the immunotherapy had caused her colon to stop working.  For me, I didn’t know if this was just part of the treatment, a side effect, part of what happens with cancer, something routine… or if I was literally watching my wife die in front of me.  Thankfully, I had two more months with my sweet sweet Kateri.

My bed until the cot came.

Because Kateri didn’t have control of her bowels, she had a room to herself. I guess when someone doesn’t have control of their innards and are shitting all over the place… they consider it a biohazard.  Although it was a stressful situation, although we were scared, although we didn’t really know what was going on we felt lucky that she had privacy… that we had our space to deal with this together.  Kateri did find comfort in the fact that she was in a place where there were people to take care of her and because of that, didn’t want anyone to come visit her… didn’t want anyone else to try and take care of her… didn’t want friends and family standing over her where she could see the worry in their eyes.  She just wanted to let the docs and nurses do their job… and make her better.  I’ve gotta tell you, having to inform your best friends… her best friends… having to tell family members that they weren’t welcome to see her because she wanted to be left alone for the time being… well, that just sucks… and made for some intense situations.

Kateri was in the hospital for a total of two weeks.  During the first week is when she had CT scans, tests, pokes, and prods.  One late morning/early afternoon one of the docs came in to let us know about some of the results… another moment where hope is kind of hidden by the slap of reality.  He said that the good news was the larger tumor they had found had shrunk a little.  The bad news… they found nine more. This was after a radiation treatment and two immunotherapy treatments… consisting of two drugs at each treatment.  Cancer… it can chip away at hope.

(I’ll admit… thinking about this shit, remembering this shit… well, I just lost my shit.  I mean like the loud, uncontrollable crying where the body shakes as your hands cover your face and it almost sounds like you’re laughing.)

Monday Night

Luckily, Maria had planned to come up for a visit during this time and Kateri only allowed myself and Maria to be in the room with her. I say luckily, because it had occurred to me that while my wife was having major gastrointestinal issues… we didn’t have a toilet upstairs because we had decided to remodel the upstairs bathroom before all this crap started. That meant that Kateri couldn’t sleep in her own bed… and that wasn’t acceptable.  When you love someone… you do whatever you need to do to take care of them… and I needed to learn how to tile a bathroom floor, how to do some plumbing, and figure out how to get a functioning toilet in a bathroom… while still working, still being at the hospital, still being there for my wife. So that’s what I did.

Tuesday Night

I think Maria got there on a Saturday… maybe Sunday. We were under the impression that Kateri may be discharged by that next Friday so I relied on Maria to be there with Kateri at night while I prepared the bathroom.  While Maria was here, I would go to work in the morning… briefly, then go to the hospital and be with Kateri while getting updates from Maria about social services, future options (Palliative Care), and to talk to doctors and nurses.  In the evening, I would go home and work on the bathroom until about 4 in the morning, sleep for a couple a hours… and do it again.  I was driven.  I was under pressure. I was stressed out and worried, but just kept going.

Wednesday Night

For the first time, I also called on a friend because I knew I needed help.  I told MPH the situation, Kateri may be discharged by Friday and we needed a toilet.  We decided that he would come down on Wednesday, we would figure out how to do plumbing (we took the approach that although neither one of us really knew how to plumb, together we could figure it out), and have a toilet in place by Thursday.  Well, Kateri got discharged on Wednesday. Luckily… again, she only had to sleep downstairs on the couch for one night because as friends and family were downstairs welcoming her home, getting her situated, putting sheets and blankets on the couch, supporting her… MPH and I were running up and down the stairs as we got ready to install a toilet upstairs (which I had to buy on Thursday). Thursday came, I went to work, went to the Home Depot, bought a toilet, brought it home… and we installed it.  Kateri slept in her own bed on Thursday night.

Thursday Night

I wish I could say that we got a toilet and things went smooth after that, but then Friday came.  MPH stayed Wednesday and Thursday night, and on Friday morning we took advantage of him being there (Maria had to go home).  I ran into town for groceries and to make phone calls to doctors and to Kureisha… the wonderful lady helping us with social services. When I got home in the late morning, I walked into the house, walked into to the dining room, turned to my right and saw MPH hunched over Kateri as she sat on the toilet in the downstairs bathroom, and he was rubbing her back.  This is another instance when I witnessed what truly good friends we have… what it is that good people do.  Kateri had fallen off the toilet, was in pain, was scared… and MPH was there for her. He picked her up and stayed with her until I got home… and then we went back to the hospital… for four more days.  This time, Kateri allowed friends to come see her… she knew what was going on… she knew it wasn’t good.

Us showing off the new “slippers” to Maria

Two weeks.  Two weeks of a twenty year life together.  I wish I could write about everything that happened in those two weeks.  About Maria and I doing a modern dance outside of Kateri’s hospital window. About roaming the halls of Dartmouth Hitchcock while on the phone with my mother and father as they supported me and worried about Kateri.  About watching the Olympics… because Kateri loved the Olympics. About interactions with nurses and the housekeeper whose family owned the produce shop in town.  About the support and time that my work gave me through those two weeks.  About family members showing up after they were asked not to and having to have those conversations in the hospital parking lot… and then better, but harder ones at their hotel room. About Leo leaving raviolis sandwiched between two crates on the porch so that animals wouldn’t eat them. About Maria taking Kateri on art tours of the hospital in the middle of the night. About the photographs and little sponges with faces on them that I put on the shelf for Kateri to look at. About the drug regiment that caused both of us anxiety for so many reasons. About Kateri opening her eyes one afternoon as a new doctor came in to check on her and her saying, “You’re really good looking.”… he was. I wish I could share so much more, but it’s rough… and exhausting. Life is big… and it’s complicated.  Sometimes it’s hard. Sometimes… it’s worse than that. Sometimes… for some things… they just don’t get better… no matter how many times you tell yourself that they are. I said it a lot… and it wasn’t true. We just weren’t gonna allow ourselves to give up. We didn’t want to.  We couldn’t… because that’s not what you do.

That is what I was doing a year ago.

Widower Notes n Thoughts:

• I eat yogurt now… blueberry… even though I think yogurt is gross.
• What if I slip on the ice and break something or get knocked out?  There’s no one here to find me.
• A hospital at  3:37am is actually quite calming and quiet.
• The crying is more sporadic these days. It doesn’t really matter to me anyways… I’m fine with crying… whenever… wherever.  I figure, if someone has an issue or judges me over crying in the coffee shop because I’m sad my wife died… fuck ’em. They’ve got issues… and don’t know what it means to be a man.
• I still wanna watch a scary movie by myself… but haven’t. (I live in a drafty old schoolhouse in the middle of the woods… and can easily freak myself out)
• It’s weird meeting new people who don’t know Kateri… or who have only heard of her.
• Yup, still playing guitar to fill the silence… and because I enjoy it. I just never thought I would be trying to learn a Shawn Mendes or Twenty One Pilots song, but love that I learned Tracy Chapman’s Fast Car.  And no… I don’t sing.
• If you are going through shit, just realize you are not alone. There are tools out there for you… and people. Use them.
• This is a fucked up way to approach life, but… it can always be worse. Keep your eye on the positives.  They’re out there… just hard to find sometimes.