Saturday, February 14, 2015

My Incandescent Heart

My Funny Valentine
It's been exactly 4 weeks since Dow's light faded. Life completely changed-yet continued nearly unaltered all in that same moment.  There's not a single millisecond that goes by that he's not on my mind one way or another. Initially, I filled my time by focusing on every minutia of making the arrangements . All walks of life turned out to say goodbye. Old friends, new friends, friends from near and far, colleagues, acquaintances, neighbors, teammates, and family. I have been a bit bewildered by the reactions regarding the men of rugby. I've had numerous people mention how surprised they were to see these sweaty, foul-mouthed giants turnout in throngs. Beautifully quaffed, completely endearing, and crumbling, with the loss of a dear mate.  This is the rugby family I've come to know and love. All of them, cut from the same unique cloth as Dow. Intelligent, delightful, incredibly successful and sincere men; who all just happen to like to bash their heads into one another and whose vernacular could make a sailor blush. I can only hope that Dow was proud of the way we chose  to honor him and celebrate his life.

Aside from picking up the pieces to my broken heart, I've also had to mend the tiny bruised and battered heart of our three year-old.  This was by far, the thing I dreaded the most during this process.  From the beginning, we were as honest with Sloane as we could possibly be, in terms of which she understood.  She knew dad "was sick" and that "dad's head had a booboo." Nothing prepared me for that Saturday morning when she came bounding down the stairs like she always had. It took a bit, but she soon asked to go in and see her dad; just as I started fumbling over words- she was quickly distracted and I was given a little more time to choose them carefully.  When she finally found her way back, about an hour later-I still didn't know what to say.  I simply told her that her dad had died.... He is no longer here. His body was very sick and it stopped working. She thought for a moment and said "When he feels better he will come home, and we will see him." I took her into the office that had become his hospital room for the week and showed her the empty bed. I said "We won't see dad anymore, he is gone." "He's in Heaven." (For lack of a better term, to her-this is a concrete place) She said "God will make him feel better, he can walk and he can talk, and then we can see him." I once again reiterated our reality and it finally seemed to sink in. She whimpered and said "I miss my dad." I said, "I miss him too."

We hung out in that room for most of the weekend, repeating this same conversation multiple times.  This has continued, but the frequency has diminished. She seems to be doing well. She started counseling this week and appears to be quite enlightened for her age. There is no right or wrong way to handle something like this. I feel like honesty works well for us. I want the kids to know this was not a choice Dow made-he would have given anything to be with them. I feel it will be even more important to preserve his memory for them. While this is hard for me, I think it's crucial to talk about him, tell his stories, keep photos and his personal belongings around-so they can hopefully get a feel for, and keep their vague memories of their wonderful father.

As the days multiply, the recent flood of horrible images have started to fade. Slowly, Dow's puffy face and altered gaze have left my mind and all I see is that charmingly crooked smile and persuasive blue eyes. These are the memories that paralyze me.  Normalcy may be returning , but this is when I miss him most. Night time is the worst.  The stillness allows me time to reflect and remember so many sleepless nights we spent playing games, watching movies, and scavenging for late-night meals.  The advantage of coupling up on the night shift is that when you have free time, most of the world around you is asleep. Stripping away distractions and daily responsibilities, leaves you with the ability to completely focus on the person in front of you. The loss of this kind of intimacy is indescribable.

Last Valentine's Day, we spent a beautiful evening at the Nelson-Atkins Art Gallery, studying contemporary works of art in which "love" was displayed.  A particular piece struck us both deeply, and I can't help but think of that piece today. Félix González-Torres created a modern instillation that featured two hanging light bulbs; cords intertwined, illuminating the space indistinguishably.  Anyone that houses the piece has been instructed not to change either bulb until both have burned out.  Such a perfect analogy.  As life goes, when two souls find each other, rarely do their spirits exit together. It appears I am the lone flickering bulb in the gallery trying to fill the darkness left behind.

Saturday, January 17, 2015

I Am a Widow.

I am a widow.

Dow left my side at 1:57am. We were at home, surrounded by friends and family.  He waited until our sadness passed and chose to leave listening to epic "Dow" stories. 

His liberation is now my suffering. I am so grateful his spirit is finally cancer-free. 

"For never before in story or rhyme, (not even once upon a time) has the world ever known a you my friend, and it never will, not ever again."

Tuesday, January 6, 2015

P(ractice) E(xit)

I thought Saturday morning was it.  Dow woke up early that morning, went to the restroom and returned to bed. He said he could not catch his breathe and was panicking.  We'd been dealing with this for about 10 days, off and on. Last week when he went in for a check up, I addressed it with his doctor and she decided she thought it was probably anxiety driven and we discussed the measures to take when it occurred.  The week went on and Dow steadily declined. Finally Friday was time for his chemo infusion. We went in, they took his vitals, which again seems slightly off-but they went ahead with treatment.  Friday evening the breathing and discomfort continued and I checked for swelling, checked Dow's legs for clots (no swelling, color change, etc.) and he looked good.

Saturday morning was the first time he'd really presented with the tell-tale signs of a Pulmonary Embolism.  After about 45 minutes of not being able to calm him down, I ran to the drugstore and purchased a saturation monitor. This device checks heart rate and the percentage of oxygen flowing throughout the body.  A healthy person's is usually 95-100%.  When I got home, Dow's was 61%.  The fact that he was talking and coherent with this number is an anomaly.  We decided to call an ambulance.

Pulmonary Emboli are blood clots in the lungs which prevent proper blood flow and gas exchange. Left untreated, they are always fatal.  We both also knew that the treatment for these is administered blood thinners-a contraindication for brain tumors. As the risk is very high for these tumors to start uncontrollably bleeding.
Dow remained calm, and asks for a few minutes in our room-he felt he would not be returning home.  This really disturbed me, as anyone who has been around beings approaching the end-they usually know.  Having met they way we did, we spent a lot of time having extremely morbid discussions. And after everything we've gone through now, I knew the plan was for Dow to be made a DNR when the time came.  Luckily, for me-he was able to give me the gift of telling the paramedics that he was not to be intubated and compressed if it came to that himself. I was not going to have to make that call watching him gasp for air. Thank you, love.

Soon enough, the CT came back with a positive PE diagnosis.  After much discussion, we decided to take the risk with Lovonox shots.  Dow was admitted to the ICU for 3 days receiving blood thinners and oxygen therapy.

We were able to return home last night. He is doing great, wearing in home oxygen, and getting lovonox shots twice daily.  The oxygen will probably be temporary. Just until the clot fully resolves-the thinner on the other hand will be indefinitely.

While I was not prepared to lose Dow on Saturday, a massive PE would have been a peaceful and acceptable exit for all of us.  There is still a risk of the medication causing a massive head bleed at any moment-but this risk was worth taking with the alternative.

Sloane and Dow playing "hospital" at home