There seems to be some confusion on Sam's treatment so I wanted to give another update on our inspirational buddy.
On the transplant: the procedure itself went as well as it could have. But honestly the day was a little anti-climactic. Jim's marrow cells were given through Sam's IV and apparently they just, "know where to go" when they entered Sam's blood stream through a vein in his arm. (Which I think is crazy. But admittedly, I don't science very well). So although we knew the weight of this transfusion was much greater, it looked and felt so similar to the blood transfusions he gets very frequently (he's had 2 bags today, for instance). We won't know if the transplant was successful for a while yet, so now we are waiting and dealing with symptoms in the meantime. If the transplant is working, we should start to see healthy cells in about two weeks. But it could be 60 days or more before we know if the transplant was successful. Basically, put on your patience pants, because that seems like FOREVERRRR to me. But alas, I've said it a million times and I'll say it again: one day at a time.
On the symptoms: Sam is back to 'Immune system zero' now, and will be for a few weeks, which is dangerous and scary. So far though, he's doing great and seems to be right on track according to the docs. Still, "right on track" is hard, and has definitely been the toughest stretch he's endured thus far. The chemo he received leading up to the transplant left him with heavy fatigue, troubles eating and lots of GI problems. It is SO important that he stays healthy and infection-free during this stretch. So much so that the heavy cough of the patient in the room next door keeps me up at night worrying. What if he somehow gets it from a door knob or something?
On other things that keep me up at night: Sam is also being given drugs to treat Graft-Versus-Host Disease, which is where Jim's healthy cells recognize Sam's cells as foreign, and tries to attack them. GVHD can be a really serious and threatening side effect of marrow transplants, but it has recently gotten much better. During the last time he went through treatment 5 years ago, patients & docs really avoided transplants due to threats of GVHD, which can destroy your liver and cause a bunch of other potentially-fatal problems. But during the past 5 years, they've made huge strides at preventing GVHD, and Sam started those drugs on Saturday morning. So while GVHD is still a big risk, we're obviously so thankful for the medical advances, and it just shows how much we're still learning about leukemia.
On our souls: Emotionally, we go up and down with Sam's hard days and good days. Yesterday sucked, plan and simple. But today is better. Today he walked 9 laps around the floor while I snuck out for a run this afternoon and enjoyed a beautiful fall day in Madison.
We'll take it.
Does that help answer questions? Don't hesitate to ask in the comment section.
Hope everyone is having a good weekend! If you did something fun, text Sam a picture and say hi :)
This protocol is hard to keep up with and we're getting a lot of questions. Here's what's up this week (and beyond), post-transplant:
I won't speak for Sam, but I know this week has been really taxing on me personally and I'd imagine he'd say the same. It's so hard to watch him suffer from the withdrawal pain, and we both worry about what's around the next corner. Transplant day was such a milestone, but it's hard to stare down the long road we have left to travel.
But I also recognize a million things we have going for us. So I made a little happy-list.
Sam posted this to Facebook, but I'm adding it here for continuity and for our friends/family who are not on the 'book. -J
Well, Dad's marrow cells are in. I like to envision them as heathy red salmon, swimming far up into the headwaters of my bones to lay eggs and write the next chapter of life.
Today has been the most emotional day of my life. Reflecting on the sacrifices that so many of you have made, about how great of people Jenny and I are surrounded by in this life -- people from across the planet -- has brought me to tears over and over again.
From having dozens of people show up to help us pack and leave the state we love, to people trying to budge in line to give me their bone marrow; from driving hours to come to Madison to visit us to cooking us a warm dinner; I am humbled by the opportunity to call all of you my friends and family.
And I am even more grateful to you all for the 29 years of joyous memories that bring tears to my eyes and fill the dry hospital air with laughter everyday.
Now it's back to fighting for more days, weeks, and years to share and make new memories. The docs say the next 21 days are going to be hard and dangerous. Then, if the transplant works, my counts should start coming back like the salmon I wait impatiently for every year.
Regardless of what comes next, tonight I consider myself one of the luckiest people on this planet thanks to the people I have had the opportunity to share it with -- thank you all for that.
I've always believed in Laird Hamilton's philosophy of fitness that you should treat your body like an old truck, never a sports car. If you park a truck for too long it might never start again. The key is to keep the truck moving.
Two days into pre-transplant chemo and it was a little harder to get the truck started this morning. After a few minutes of turning the key, giving it gas and a few sprays of starter fluid resulting in lost eyebrow hair, we finally got it to turn over and to the base of a treacherous mountain pass. It's clear that this one is much steeper and longer than the ones that have come before, but we're on our way.
Even at the base of the mountain, the road is washed-out gravel and we can't begin count how many switchbacks are ahead. It goes without saying that there are no guardrails.
Jenny did such an eloquent job of explaining fear in the last post that there is little for me to add. But you all know how well I do with heights, and suffice it to say that I'm scared shitless.
Nonetheless, fear cannot and will not paralyze progress. We've made it two white-knuckled miles up the mountain today (nine laps around the hospital floor), burning three quarts of oil and backfiring as we go (rare occasion that I don't intend this metaphor as a fart joke).
The travelers coming down the mountain warn that the pass gets steeper and more dangerous in the miles ahead. Knowing we have no choice but to keep going, I'll continue to get up each day, start the truck and slowly push as far as it will go. Progress will be slowed by clearing rock slides and taking plenty of breaks to cool the overheated engine down and top it off with oil.
All along, I am fortunate to have the stiff wind at my back in the form of support from so many of you. I cannot begin to explain the comfort and momentum I find in the shared memories and shared hope contained in messages of support. Even when I do a terrible job of returning phone calls, emails and messages, know that I get them and feel more love from and for you all than words can capture.
And if somewhere up ahead the truck doesn't start, I'm lucky to have Jenny riding co-pilot whose strength I cannot comprehend, but can always count on. She seems ready and eager to hop out and push the truck to the top of the mountain, where we can use gravity to jump start it.
Once running, we can put the pass in the rear view mirror and coast gleefully down the windy road back to tree line and finally home to the river valleys where we belong. The river valleys where we'll meet back with so many of you, smiling as we sip whiskey from flasks and faithfully cast our flies. River valleys where we can sit back and let the glacier-blue water carry us and recharge our souls as we get lost in the beauty and silently wonder what we will find around the next bend.
When this all started, fear and I lived at the ends of two poles. If it showed up next to me, I’d push and shove it away until it couldn’t pop its head back out for many days or weeks. This system worked well and I was good at it. Unfortunately, I grew tired. Fear wore me down until I became stressed and frustrated.
These days, fear has settled into our life and operates essentially alongside me as a fifth limb or alter ego. Uninvited, it rides in the car to and from appointments. It asks questions at the clinic and then forces me to stop listening as it whispers in my ear what the answer could be. It sleeps in our bed, and emerges in quiet moments alone, standing in the shower or waiting for coffee to brew in the morning.
It has an annoying knack for showing up where I least expect it – during hikes when the sun is shining and leaves are cracking underfoot, or sometimes when Sam and I hug, it wedges itself between us. It’s sitting with me now while I type.
As hospital days creep closer and closer, Sam and I have prioritized spending lots of time outside. Luckily, this fall has been beautiful. Unlike in Anchorage where you blink and it’s over, the season crept up on us with the trees seemingly turning orange one by one. Now, the light shines differently in the woods. Where before the world was green trees and blues skies, now it’s orange and yellow and red. We’re taking the time to notice all of it, because on Monday it will be over.
On Monday, the clinical trial picks up and it’s back to the battlefield in the war of Sam vs. Leukemia. He’ll be back on B6/6 preparing for the bone marrow transplant, which is scheduled for the following Monday, October 19th. After that, we’ll wait 32 days to find out if Jim’s blood cells are able to fight off Sam’s stubborn Leukemia.
I recently listened to a TED Talk about fear. The speaker pointed out that we’re often encouraged to think of fear as weakness, and that we are hard-wired to be optimists. We’re told not to worry. We’re told to fight, conquer, and overcome. She encouraged us to think of fear differently though. She talked about how fear is a form of unintentional storytelling that we all know how to do. She said that, every now and then, our fears are an innate ability to predict the future.
I’ve been planning for a while now to bring fear with us into our tiny hospital room. Somehow, consciously planning to bring it along will make it less offensive when it shows up anyway and sits on top of my chest like a pile of bricks as I know it will. By bringing it with me, I’ll be even more eager to make it wrong. I’ll continuously seek to take a different path than the one it dictates. But I’ll also be prepared for what it can tell me about our future. With fear, I can’t be blindsided.
So, like the orange and red of autumn, I’m trying to be intentional and truly acknowledge its value, and I know it will be over and gone before long. Unlike autumn, I’m just not sure which season lies on the other side. Fear has a lot of opinions about that, but so does Sam, a team of Doctors, Jim, Debi, the rest of our families, and an army of warriors including you and I.
Here’s to being stronger than our fears.