December 15, 2012

• Elegy

  Posted by Sammy

  10am 12/15/12

  From Home

   

  As many of you know, I write this post from a new reality. On December 5, 7 years to the day and nearly to the hour of her original diagnosis, Stephanie passed away. She was surrounded by family and love and Christmas music had been playing in the background all night. It was as peaceful an end as we could probably have come to in this battle. In the end she fought this disease right up until the end staying with us until her father and sister arrived. She was still the boss. Stephanie always fought this disease on her terms and took control of an out of control situation. That never changed. We hadn’t posted much on here since August. In fact she was getting a post ready:

   

   

  “Posted by Stephanie  6pm  from the house

   

  It’s been three months since my last post.  There’s not a day that has gone by that I haven’t thought, “I should really do a post”.  Have things been busy in that time?  Yes.  Have there been days when I didn’t feel well enough to type?  Certainly.  Honestly, though, I just haven’t had the urge or drive to sit down and do it.  Almost like I lost my writing spark for a little while amidst the circumstances.  Then, the more time that passed, the more I knew I had to post about, and it became a seemingly overwhelming task to cover it all.  BUT, my spark has returned, SO much has happened, and it’s time to share it all the best I can.  Let’s start by going back to the followup appointment with Dr. Benjamin that I had in early August.

  August checkup: “

   

  Stephanie’s reasons for not posting are above. Mine were not too different. One beneficial side effect of going on the Votrient was that she was home, not debilitated and able to do some things for herself. That combined with a wonderful marching band season made things seem almost normal. Steph had some pain here and there and discomfort here and there and some fatigue. But cancer wasn’t in our face. The gravity of our situation wasn’t in our face. It was the elephant in the room. And with as little time for housekeeping during marching season as there is, who has time to notice an elephant? Until November.

   

  Steph had been off her Votrient for several weeks. Her platelet count just wouldn’t budge. And her pain was slowly increasing. So we contacted MD Anderson and Dr. B summoned her to Houston. I had an uneasy feeling but no idea it would be the last time this happened. That was when we finally got the news we had feared for nearly 7 years. The cancer was growing, becoming out of control. Her bone marrow was so shot from countless dozens of chemo rounds that she could no longer produce enough platelets. Chemo was not an option. Maybe a Phase I drug IF her platelets ever went up. They never did. We had the best doctor at the worlds best cancer hospital and we had exhausted everything they could do for her. Her cancer simply didn’t play by the rules. It shouldn’t have come back the first time. Good surgery. 95% or greater necrosis. The first liver tumor should have been the end of it. Good surgery and better than 99% necrosis. Yet something allowed it to bend the rules. Something somewhere could go dormant and hide from the chemo. It really was the monster under the bed.

   

  After thanksgiving we set out for Reno for a final attempt to do something. As Stephanie said “I know the consequences if I just sit here. I have to do something.” We were 4 treatments in at the alternative clinic in Reno. Her pain had become progressively worse from the appointment in Texas to Thanksgiving. Throughout that month, for the first time I could tell she was sick by looking at her. She never lost the smile, the light, the vitality that defined her, but I knew she was getting very sick. By the first weekend in December she was in considerable pain and her platelets were getting frighteningly low. Still she wanted me to head home for a few days as planned. I was afraid something would happen. “I’m a big girl” she told me “I’ll hang on till you get back.” That was Saturday morning, December 1.

   

  2:30 am Tuesday I got the call. I always thought if I got the call to come back early, whether to Houston or wherever it would be her mom or a doctor. It was Steph. Wonder Woman herself was calling me back to be there with her at the end. I got a flight and went to the hospital in Reno. We were able to chat a bit when I got there. I think she was surprised I got there so fast. And there we were, together for her final day. Im not sure how many times we said “I love you” that day. Lots. When she slept I’d talk to her or look at pictures with her mom. I had so much support that day from friends and family to carry me through. We played Christmas music the whole time. It broke up the silence and helped relax us and, I think her too. The last song I remember hearing, softly right at the end was O Holy Night.

   

  Today is December 15. 7 years ago we started chemo for the very first time. So full of fear and yet so full of hope. We stood there together. Holding hands at the threshold of hell ready to walk whatever path was before us together. While Steph is no longer physically here, this was a victory. It was a victory of love through every trial imaginable. It was a victory of hope in the face of insurmountable odds. It was a victory of strength and grace over fear and doubt. My sorrow and sadness remind me my wife is not physically here. I cannot call her on the phone, talk with her when I get home or do the things we did every day. That is the challenge of all this. My faith tells me she is at peace with the Lord and that gives me comfort. And I know she is always with me. No matter what direction my life takes from here this remarkable woman, this force of nature is with me. And the impact of her legacy will endure for years beyond all of us. So we shed tears for her as long as we need to. But we remember her smile. Her joy. I leave you today with this final picture. I put it on facebook and I put it here. It was my first picture of her and remains one of my favorite. It makes me tear up for what might have been but rejoice for what was and is. 12 years ago I met a beautiful 21 year old who was, to me, sunshine incarnate. The sun always cuts through the clouds eventually and it will now too. And if we let it and are open, pretty soon her sunshine will light up the darkness once again.

   

  

   

  Live. Give. Love.

  For Steph, for us, forever.

   

   

  Peace,

  Sammy

   

   

   

   

  • 11:52 am
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