Lying on the floor next to Birkie-dog, my hand moving up and down on her chest with her breath, I feel her gentle heart beat as we fall asleep on the carpet at the foot of our burlwood bed. I open my eyes and the large round camera silently snaps photos of my heart pumping radioactive blood in a dark room at the University of Washington Hospital. My eyes close and mind opens again. I’m driving my Ford Ranger truck camper and turning toward the Kenai Peninsula. It’s sunny and I feel the anticipation of pushing my boat into the water, rowing down the blue water, hearing the glacial sediment on the bottom of the wood hull and feeling that first tug of a trout on the end of my line. “We’re done with the second round of photos,” Missy, the friendly radiologist announces, snapping me out of my beyond-a-dream vision. “Just one more to go… “ She repositions the camera, and steps away. I’m standing on Powerline Trail in the snow looking at Jenny. Every strand of her blonde hair blowing gently in the breeze in focus. I embrace her and look over her shoulder through the river valley at rocky white peaks back dropped by deep blue and striations of white clouds across the sky. “Whatever happens, I will always be here in this place and in this moment. I will be in the wind, in the water, in the trees. If you ever need to find me, I will be here. I love you and always will.” “We’re done!” Missy sits me up, pulls the IV out of my arm, and sends me back to the waiting room where I reunite with Jenny. The nerves set in. My ejection fraction (a measurement of heart function) must be above 50 to proceed with the chemo that gives me the best chance at getting to remission. I’ve had a lot of heart-stressing chemo in my life. Last two tests came in at 50 and 55. This one could be close. Results will come in the next 24 hours. The waiting game is underway to determine if my heart is healthy enough for abnormal chemo activity. It’s been one hell of a couple of weeks and a long road getting here. At first, we weren’t aware of any decent treatment options and I found a strange comfort and peace in the idea of not fighting, of enjoying my last weeks or months at home in Alaska, of hiking every day in the mountains that my body allowed, then slowly fading at home surrounded by the Birkie-dog and people I love. But then we found out that there are options in Seattle that gives me a chance. Not a great chance, but a chance nonetheless (maybe 1 in 5). Jenny and I then proceeded to have a long discussion, including input from many of you, about whether it was worth fighting. About what dying well looks like. About the risks of dying miserably in a hospital fighting versus spending my last days surrounded by the people I love in the comfort of home. It’s one of a few tough conversations I believe we don’t have enough of with one another. Some might think that my first transplant failed because the leukemia came back. I can’t view that as farther from the truth. That transplant gave me six of the best months of my life. It gave me the best 11 days of my life driving back to Alaska with Jenny, the opportunity to catch my first grayling and king salmon, to have tearful reunions with our found-family and friends in Alaska, to go on adventures with them in the mountains and on the rivers I love, to take my first float plane ride, to experience the majesty of the Tongass National Forest, to see the Arctic Ocean, to stand with a life-long friend marrying the love of his life. It gave me six more months to laugh, to love and to live – and I cannot be more grateful to the doctors and to my Dad (my bone marrow donor) for making it all possible. And as awful as the thought of starting over again, of getting blasted by chemo, of spending nights writhing in the pain of steroid withdrawal, of weeks pissing and shitting blood, of the thirst that comes with going a week without being able to swallow water or even your own spit without choking – I realized that even more terrifying is the idea of dying not knowing if I could have had six more months, or even two, five, or fifty years with Jenny and the people I love here on this earth had I not given it one last shot. And so yesterday Jenny and I sat waterside in Seattle, waiting for a phone call or email that would say if my heart had anything left after getting hit so hard for so long. We walked the sunny streets of a city foreign to us doing our best to calm and comfort each other through the waves of fear, anxiety and depression. To constantly step back and savor every moment of being outside, being free, being alive and being together. When we found our way back at the hotel, we took a quick nap and the phone rang. It was the admissions coordinator at the hospital to go over details. “Do you have the heart scan results by any chance?” “Let me look.” Deafening silence. Heart slamming in chest. “Looks like your EF came back between 59 and 65 percent. We should be able to move forward with the chemo as planned.” Filled with the joy, memories, love, adventure and visions of the last six months, my heart is fuller and stronger than ever. Tonight the chemo is dripping my friends. Wish me luck.
DAD
10/30/2016 12:15:36 pm
Thank you Sam, I wish I could take your place, so you and Jenny could continue on with growing old together with out all of life's vicissitudes. Thousands of friends, family and loved one's are feeling your pain through yours and Jenny's writings and supporting you with all the love we can. Lord bless you!
Hannah
10/30/2016 12:54:12 pm
All the luck in the world Sam!!! We're all on your team. XOXO
Jeanie
10/30/2016 02:22:17 pm
Many prayers coming from Wisconsin!
Holly Burns
10/30/2016 03:23:58 pm
Sam and Jenny,
Kim Vallera
10/30/2016 03:27:35 pm
Sending good vibes a all the strength possible to you, Jenny, family, and all your care providers! I think of you often a
Eileen McNamara
10/30/2016 03:49:22 pm
Grandpa Weis and I send you both lots of love, hope and hugs. We are with you in spirit each day; each hour.
Jo Lemmens
10/30/2016 04:21:02 pm
A candle will remain lit for as long as necessary and prayers said for you and Jeñni. You are both such an inspiration. Stay strong and continue the fight.
Scott
10/30/2016 05:22:52 pm
Stay strong Sam! I am with you in heart and spirit!
Andrew Jillings
10/30/2016 05:23:24 pm
Good luck Sam and Jenny. Be strong. Hadley, Indie and I are rooting for you. Vero possumus.
Jan Dutton
10/30/2016 05:55:11 pm
Thanks for helping the rest of us keep perspective about what is important in life. Sending you love and prayers.
Bev Mangerson
10/30/2016 08:10:03 pm
Thanks for keeping us updated Sam. You and Jenny are two of the most amazing people. We are rooting for you. Stay strong
Cheryl Edwards
10/30/2016 08:42:29 pm
Wishing you the best Sam and Jenny. I left Seattle yesterday and had I known you were there I would have told you in person! Hugs to the both of you
Cindy Vethe
10/31/2016 05:35:35 am
A SHIT TON OF LUCK, GREAT ENERGY AND PRAYERS COMING YOUR WAY SAM!!!!!
Hillary Feder
10/31/2016 05:53:12 am
We're with you Sam!!! Every step of the way
Ben Barnhart
10/31/2016 06:34:03 am
I will say Sam I wish I could shoulder your pain and perosonal hell your going through. Now time for my smartass nature of what makes me, me..... only 4 pair of underwear in 11 days that's impressive even on my standards 😜.
Ben Barnhart
10/31/2016 06:34:17 am
I will say Sam I wish I could shoulder your pain and perosonal hell your going through. Now time for my smartass nature of what makes me, me..... only 4 pair of underwear in 11 days that's impressive even on my standards.
Karyn Jones
10/31/2016 06:39:40 am
Not sure that I can say it any better than Cindy V! Cheering you on from Pennsylvania and sending a shit ton of luck and love. xx
Brian Litmans
10/31/2016 09:06:15 am
Good Luck Sam! Keep on fightin'. You've got this. Lots of love and positive thoughts coming your way.
Sally Mode
10/31/2016 10:39:34 am
Sam...you have a lot of love left to give to this world:
Matt Rafferty
10/31/2016 04:44:55 pm
Wishing you all the luck, Sam - as well as all the power from the mountains of the Chugach, the salmon swimming up the Kenai, and the waves pounding the shores of Resurrection Bay. All the love in the world to you, my friend.
Craig Caldwell
11/1/2016 09:13:02 am
As an old friend of your Dad and Mom from Baraboo, know that you, Jenny and your family are in our thoughts and prayers. Thank you for your blog which is so smart and brave. We are with you Sam.
Jackie Jillings
11/2/2016 12:52:47 pm
Sam and Jenny - you both write so well. Truly inspiring. I often think of you and check up on the blog - and especially this week have been hoping for at least a glimpse of better news for you. Stay strong. Comments are closed.
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