Dad, check this out. In case you can't read it from the image, the caption says:
On the last leg of my flight home from Anchorage I sat next to an exquisite woman, and my new friend, Mary Reagan Zingler.
Sam and my story is complicated to tell to strangers. First I start with, “Well, I live and work in Alaska.” Then the next response, “I am living in Wisconsin for a short time” doesn’t always make a ton of sense. So the story about Sam’s recurrent leukemia, bone marrow transplant at UW, and subsequent complications came out. Mary, who is an RN not only understood all the medical terminology but felt so deeply about our whole journey. Today, she delivered me this amazing home-cooked meal at the hospital: spaghetti, bread, wine and cookies for me, and bland/easily digestible chicken noodle soup for Sam. I am SO moved by her thoughtfulness and generosity. Thank you, Mary! And most of all, YAY for good people with kind hearts spreading the love.
Sam Weis 30th Birthday 30k Challenge!
As some of you may know/remember, Sam XC skis his new age each year on his birthday, which is January 15th. Since he won’t be able to carry on this tradition this year, I thought he would be really excited to see his friends and supporters take on this challenge on his behalf.
Now, if you’re starting to do the math in your head… yes, 30k is 18.6 miles. It’s no joke. This is definitely going to be a challenge, but you have 22 days to prepare for it and I know you can do it. Here is what I am thinking:
A little background info & inspiration....
You guys, I am so excited right now.
And considering that this has been easily within the top five worst weeks of my/our lives, excitement feels GOOOOD.
This week, an old friend sent us one of the most touching notes Sam and I have ever received. Well, we actually received so many touching notes this week, but this one really stood out. Here is part of it:
A few years ago, I remember seeing pictures of you guys on facebook conquering the most amazing athletic feats in the most beautiful places in the world...I had recently come out of a 3 year relationship and remember saying, "I want a partnership like Jenny and Sam. I want a life partner who will take on crazy adventures to see beautiful places with me and encourage me to seek out athletic challenges to see the most remote and beautiful places, and who just makes me the happiest I've ever been." You and Sam, without knowing, gave me so much hope that I could find a partner to take on life adventures in the best and worst of times. I am getting married [to my fiancé in 2016], who is exactly that person. I think about you and Sam often and how you live in the present- milking every moment, seeing and enjoying the beauty of this world together- where ever you are! So basically- you guys are rock stars and you inspire me everyday.
Wow, right? We were floored and so heartened by this story. I was so excited to share it with Sam because he LOVES to inspire people to get outdoors and experience more of what our natural world has to offer. As an environmentalist, he always prioritizes enjoying the places he/we works to protect. And, his passion for the outdoors completely changed my otherwise quite sedentary life. That is why I'm so excited for the #30forSam challenge and hope you'll consider joining me.
Whoa. This has been the longest week ever. Maybe in the history of the world? I feel like I have learned as much about myself and about patience, coping, strength, and lack of strength this week than I have in my full 27 years leading up to now. The problem is, I realize, it hasn’t actually even been a week yet since Sam was admitted. (How is that possible?)
Anyway, the days are crawling by and Sam’s condition has evolved. I won’t say it’s worse, because some things have improved. But in other ways he has become more and more miserable and that feels worse. I’ve never sat so close to someone for so much of the day and also missed them so much at the same time.
The initial treatment for Sam’s GVH didn’t work, so they are onto the second choice drug to try to fix Sam’s insides. They seem adamant that they need to get this under control quickly, but also that there are more options to try even if this option #2 still doesn’t work.
I could honestly just do without doctor updates at this point because we tend to find ourselves somewhere on the “Modern Jackass” spectrum (as This American Life producers call it), where we talk expertly about something we don't actually know anything about. At this point, we can ask Sam’s doctors about side effects and time frames and next steps and survival rates, but really, all we have to do is wait and support Sam. That is all there is to do.
So, after a downer doctor update this morning, I sat on the edge of Sam's bed and we had a pep talk. I said, “Hey, you’ve stared down some pretty daunting numbers before and absolutely breezed by them. You are young, strong and have an incredible, brightly-shining will to live that is no match for this disease.” And with that, his face relaxed and he said, “ok. You’re right.” And turned over, and went back to sleep. It wasn’t the most inspiring pep talk. It wasn’t the first, and won’t be the last. But Sam knows this and he is patient and strong. He doesn’t need many pep talks because he knows he has many more mountains to climb and fish to catch and adventures to have. He is probably dreaming about them as I type. Or I hope he is.
Unfortunately, by now he is well versed in the need to put his head down, put on his patience-pants, and get through the shitstorm. He has done it before, and although he doesn’t FEEL like he has much left to give, I know he can do it again.
Thank you to so many of you who have taken time to write. I have read as many notes as I can to Sam and I personally read them over and over throughout the day to remind myself the army of vibes being sent straight into his soul.
Happy Christmas, all. Wishing you peace, happiness, joy and patience-pants from the Weises.
Much of this year, especially the weekends, has been spent sitting in the hospital room while Sam sleeps. On my computer, reading a book, coloring, waiting.
Waiting for him to wake up, waiting for him to feel better, waiting for life to resume.
Sometimes I read blogs about coping with cancer but they seldom help. I read the news, text my friends, look at Facebook, scroll through Pinterest. The future has come in and out of focus and planning has taken a back seat to simply getting through today.
When we learned Sam was in remission, I thought it was the beginning of the end of all of this. Sam wasn’t so sure, and now I am terrified that he may have been right.
Since that day, he’s roller-coastered through fatigue, nausea, vomiting, and diarrhea. Since we left the hospital last time, when one symptom would end, another resumed until this last round became so violent it put him back up on B6/6. Not keeping any food down for days in a row will do that to you when you weigh 115 pounds (& dropping). He is pale, skeletal, covered in a rash caused by GVH and just simply miserable.
His doctor confirmed what we knew this morning: his situation is “serious.” They will be looking for him to improve within the next couple of days before it becomes even more serious. If it doesn’t improve, it means he is not responding to the treatment. That would be very bad. Until then, we continue to wait and hope.
I don’t know how to pick myself up or be truly distracted as I keep trying to be, because every time I look at him I panic. Where has Sam gone? Where is my funny, sarcastic, active, smart, stubborn, adventurous husband? I flash back to him setting up the drift boat for an afternoon on the Kenai. Or him fighting with a colleague about how to message a bill in the legislature. Or fixing my bike in the garage with music blaring and taking breaks to do a silly dance because he knows it will make me laugh.
Who is this sickly, pale, skeleton that has replaced him, and when will real-Sam get to come back?
Sam says if he dies to try to remember him for the former, not the later. Which is so obvious to me, because I barely know the later. Day in and out, I have sat here with him in a tiny room. I’ve rubbed his back as he vomits. I’ve held cold washcloths to his face as he fought off fevers. I’ve watched movies, chatted with nurses, and attempted to remind him what life is like on the outside. Though I’ve been here through it all, we have been a million miles apart, walking completely different paths.
When he tells me he is worried that he is dying, I feel emotions. He feels all of those same emotions, plus a myriad of other physical, unrelenting symptoms that make it infinitely more real and scary. If I say that I think it will be OK and I think he is stronger than he knows, he simply looks inside himself to assess what he has left. He cannot (or will not?) communicate what he sees inside himself to me, but the look in his eyes is so telling and so completely terrifying. I hope he is wrong. I hope fear is talking, not reality. But there is no way to know.
This morning, he sat up from sleeping to take some morning meds and instantly vomited. As he did so, his eyes watered more than normal. At he retched, vomiting up the stomach lining since there is no food to expel, I think he was actually crying at the misery and unrelenting hopelessness of it all. He’s scared.
Which means I’m fucking terrified.
This blog post has no moral, or neat way to tie up in a bow. I sincerely am optimistic and believe if anyone can pull through this it is Sam. But I also know that cancer does not assess personalities or consider what its victims have left to offer the world.
It is exhausting to be realistic. And it is exhausting to be optimistic when sharing this tiny room with all kinds of misery.
I hate to keep asking and taking from all of you, but truthfully, we lean on your support and optimism and need it now more than ever.
Sam was re-admitted yesterday after a few days of miserable GI problems that left him unable to eat or drink anything, including keeping his pills down.
Right now I'm sitting in the OR waiting room while they do some tests to figure out what is going on. They suspect these issues are due to GVH (see last post) but will know more when these results come back in a few days.
I'm racking my brain to find ways to cheer him up and remind him what regular life is like and how good it will be when he/we get it back to it. Any ideas?
Thanks for the love.
Sam has been diagnosed with "Acute Graph Versus Host Disease."
GVH disease can range from mild to severe, and acute (temporary) or chronic (long term). It is too early to say which of these Sam has. Despite an array of other uncomfortable symptoms, thus far his liver & kidney function are normal, which is really good since organ damage can be a major complication of GVH.
Am I supposed to say "it's going to be ok" right now? I'm sure, ultimately, it will. But right now I am just so sad for Sam. I want this to be better, and I want him to feel like himself again. And I guess I'm feeling fairly impatient about those two things. He is so down, and it has been so long since he has been able to enjoy anything.
If you are praying or sending vibes or whatever you do, please ask that this be MILD AND TEMPORARY GVHD. Please ask that Sam can start eating & keep food down soon. Please give wisdom to doctors. Please give strength, determination, and hope to Sam's weary heart & body. Please ask that all these asks kick in right away, if that's possible? Thank you so much.
Outside the window, the airplane wing separates a starry sky and the outlines of rigid mountains that are lit by a stunning green aurora borealis. This sight is one thing that makes a redeye flight to and from Alaska tolerable and even worth staying awake for – at lest for a little bit. Though I’m utterly exhausted and sad to leave and nervous about what awaits me in Wisconsin, this is the first moment of this trip where I felt like I am where I need to be.