I'll be honest with you. This blog post sucks to write.
Yesterday we got the results of Sam's biopsy and they found leukemia in the marrow once again. There was also some regeneration of good cells, which is a good sign. But, in order to move onto the bone marrow transplant there has to be no leukemia (which, spoken in Doctor language, is, "less than 5% blasts"). He had around 3% blasts after the last round of chemo, and yesterday they read 30-40% blasts in the biopsy results.
They sent us home for the evening after the appointment yesterday, which we took advantage of by walking with Birkie, making dinner and watching the Tour. This morning Sam was admitted for another 3-4 weeks to get a new kind of chemo (well actually three kinds) and close monitoring thereafter.
The familiarity of the hospital is bumming us out a little at the moment, but we'll settle in and find a routine here soon enough. He's already been asked a million admissions questions, gotten a set of vitals, checked out by the internal med docs and through the whole rigamarole (<wow, I can't believe that is a real word and that I spelled it correctly).
His Dad is a half match for a bone marrow transplant, which is apparently an attractive new solution after complete matches from the national registry or among family members are hard and time-consuming to come by. If you are interested in the science, this article explains the studies that are being done about half matched bone marrow transplants. Sam's doctor sounds pretty confident that this will be a good plan for Sam once the leukemia is gone.
I think that's it for now. I'll update more later. Keep sending lots of positivity and love (and funny stories & pictures) Sam's way.
XO from room 679,
I am on the plane back to Madison from Anchorage. I have lots to say about my 3 days in Anchorage, but first I want to share the good news that the docs let Sam recover his counts from HOME as of last Wednesday. Getting out of the hospital was a wonderful change in pace, and we immediately made some of the homemade dinners we'd been craving, and got to sleep through the night without interruption of PICC line checks, vitals, nurse shift changes, etc. (Soooo nice.) And, Sam finally got to see Birkie-pup! Good stuff.
He has continued to feel fairly well and the blood counts are slowwwwwly starting to tick up. He'll have another bone marrow biopsy on Monday to check in and see how things are going.
Generally, things seem to be going as well as we could hope for. I sincerely believe in the power of the support you have all shown us to help keep Sam's spirits high and stay positive and healthy through this. It makes an enormous difference. Thank you!
While Sam spent his first weekend at home as a free man (well, kind of free), I headed to Anchorage to move us out of our apartment. We're not sure how long this will all take, but since there are many steps yet to go before Sam is healthy again we decided to give up our place. I was bummed about the idea of moving out without Sam and also that I'd miss hanging with him now that he's able to be home, but excited to see our people and the "midnight sun" again in Anchorage.
As expected, this weekend was an absolute whirlwind. So many people came together to help us. Their hope, positivity and generosity was incredible, and will sustain the wellness of my soul for a number of months. They gave and gave - their time, muscles, patience, money and support. My brain is racing remembering the many amazing moments from this weekend.
They picked me up at the airport (and brought me doughnuts!). They abandoned their plans in order to hang with me and help out. They patiently packed our house according to my complicated donate/throw/store/bring needs. They made trips to donate our food and unwanted clothing. They organized and labeled. They carefully wrapped our bikes, kitchen and artwork. They cleaned from top to bottom, including crummy jobs like scrubbing our bathroom, refrigerator and floors without hesitation. They were thorough, even after hours of going through our stuff. They bought food, gave me hugs, sang silly songs, wore silly hats. They helped drink down the liquor cabinet. The hauled heavy stuff, and drove our boat out to Eagle River to be stored at Sam's Aunt and Uncle's house (Thanks, P+K!). They let me stay over at their houses because staying in our empty apartment alone would be too sad to bear. They made trips to the store for packing and cleaning supplies, and beer. They laid on the floor of our empty bedroom with me and let me tell them about the happy memories Sam and I had on Sunrise drive. They told me they couldn't wait until we come back. They told me they'd store our things and help with whatever we need, whenever we need it. They asked me how Sam is doing and how I am doing, and listened with the most genuine interest and compassion. They said "give me a job!" over and over, until eventually we were packed, cleaned, stored and done.
Closing the door and pulling out of the driveway the last time at Sunrise drive was hard, especially without Sam by my side. Out of stress, sadness and fear, I'll admit I shed a tear or two over the course of the weekend, but there was literally never a moment without a pal to lean on. Being an extrovert and huge fan of our Anchorage community, this made a hard situation so much more manageable. I am SO grateful.
In between directing traffic and packing this weekend, I observed many amazing moments of our giving, thoughtful and wonderful friends in action and never felt as though I could appropriately thank everyone for every second they gave to help us. We are so thankful for the kind people and found family who make up the strong fabric of this very special Anchorage community, and immensely lucky to be a part of it.
To our helpers this weekend - We cannot wait to repay many favors for you someday. From the bottom of our hearts, thank you Eric, Brittney, Laura, Amanda, Kati, Emily, Zac, Charles, Meghan, Shaina, Ryan, Nelli, Austin, Shauna, Tara, Carly, Megan. Love you all.
I always hate walking back into the hospital.
The first time, the Monday we flew down here, was the very worst of all.
Each time, you round through the gigantic revolving doors, gel your hands with antibiotic alcohol, and try to breathe despite the elephant that settles in atop your chest. That day though, the elephant lingered far longer than usual. The only thing I could really say for the first half hour we were there was, “Ugh.”
That was 25 days ago.
Now when I walk in, round the gigantic revolving doors, gel my hands, and I fight that elephant from coming anywhere near me. It’s not that I don’t want to see Sam, it’s just not all that pleasant feeling like I live in this sterile hospital so far removed from normal life, good health, active adventures and … well, most other things that normally occur within the span of 25 days. (You - and I - can only imagine then how Sam feels about it, so I try not to complain!)
Now, as I walk from the entrance, through the pre-op waiting room and over to the B elevators, I mostly alternate between thinking, “ugh,” and just contemplating the weird alternate reality we’re living in, and how great Sam is doing despite it all.
Today was different in the best way though. Today, Sam’s very persuasive, fiery red-headed nurse practitioner convinced his team of doctors that Sam should get to be switched to oral antibiotics (instead of IV) and thus, disconnected from his IV pole.
I could try to explain how awesome this is, but I feel that only Sam’s words will impart the enormity of this decision. (I’m paraphrasing, but this is pretty close.)
“Jenny, do you know what being disconnected means?” looking at me excitedly.
“First of all, I can do the Sam dance.” (He proceeds to do the Sam dance, which if you haven’t seen it, is an amazing display of wayward elbows and knees and funny facial expressions that is really quite hard to explain.)
“And I can put on a T-shirt, and I can wear long sleeves, so can you bring me a sweatshirt next time you go home?”
“AND, I CAN GO OUTSIDE.”
So, outside we went! We walked down to Lake Mendota and back. No squeaky IV pole, no fluorescent lights, no 0.2 mile laps on the 6th floor.
When we got back, we entered UW Hospital hand in hand and it felt one hundred million times better than walking in alone. It felt like progress.
Then Sam made us take the stairs to the 6th floor. Because he’s either the healthiest sick person I know, or the sickest healthy person I know. I can’t decide which.
Here’s what happens next. We’re still waiting for his blood counts to come back up before we can leave and begin the transplant process. People who are young usually have counts that bounce back faster than people who are old (which is most people with AML). Unfortunately, since Sam has already had so much chemo, no one expects his to bounce back in any hurry. Today is his fifth day with a neutrophil count of 10. (He gets to leave when it gets up to around 500. A normal neutrophil range is 1,500-7,500. Neutrophils are the cells the fight infections.) So we’re here waiting for that and making sure he stays infection-free.
In the meantime, his hair is falling out in patchy clumps that look like he got a buzz cut from a three year old, and the hospital menu has been committed to memory. We watch the Tour de France every night, and play cards and our new games from our wonderful AK friends who visited this week (Thank you Emily, Zac and Amanda!).
Mostly though, we just work, hang out and pass time. And now, we do the Sam dance in 636.
"Do you remember our conversation last night?"
The words from the nurses mouth brought back a flood of hazy memories.
It's certainly not the first time it's happened. There was the time I woke up screaming in the Florida Hotel room, the time as a child I went for a midnight stroll near Lake Superior scaring my grandparents half to death, and the time I woke up trying to knife my way out of a tent with no zippers. Perhaps most memorably, the time I walked straight into a wall at a healthy gait with enough force to wake Jenny up a floor away and leave an indentation of my forehead in the wall.
Last night around 3am I was deep into the most important game of "golf" (a card game) that I have ever played, when the cards didn't flip in my favor. This was deeply troubling. Troubling enough, in fact, that I hit my nurse call light and began explaining the situation.
A very confused nurse promptly entered the room and began assessing the situation. I explained that I had flipped jacks when I needed to have flipped twos. She simply did not understand the urgency of the situation, which I found unbearably frustrating. Luckily, Jenny, not being a stranger to this situation, sat up and shook her head at the nurse who said "I guess I'll just get your vitals?"
I promptly fell back to proper sleep.
Sometimes when life changes so quickly, all you crave is normalcy. It feels good to know that some things never change -- even if that "normal" might be exceedingly abnormal.
P.S. For those who don't get the reference of the image, make sure to listen to Mike Birbiglia on This American Life. You won't regret it.
Those are the words the Doctor used to describe my bone marrow after the most recent biopsy. Almost nothing left. No good cells, no bad.
Believe it or not, this is exactly what we were hoping for.
For seven straight days, the chemo dripped killing off my bone marrow indiscriminately. It did what it was supposed to do, and now I have “clear marrow.”
A blank slate means that now we wait, and we hope. We wait for my counts to recover and hope and pray that all of the good cells come back and none of the bad.
The good news is that despite entirely lacking an immune system, I continue to feel strong and healthy. Thanks to generous donors that I will never meet, I have plenty of red blood to carry oxygen and plenty of platelets to stop bleeding. A huge thank you to the many people who went to donate blood in the recent weeks – it is the only thing that keeps people like me alive in times like this.
I feel so good in fact, that it’s exceedingly hard to spend day after day in a 12-by-10 foot hospital room waiting. Without an immune system, I can’t so much as go in the hallway without wearing a mask. Today is the 18th straight day being tied to an IV poll – all day every day. Walking, sleeping, eating, showering, my IV poll comes everywhere with me to continue a steady drip of antibiotics. This is a challenge for someone whose sanity is tied to spending time outside and getting plenty of exercise.
Boredom has become the single-biggest enemy. While it’s no Glen Alps trailhead, I’ve been combating the boredom by hiking laps of my hospital floor. Pushing my noisy IV poll along with me I go around and around and around the 1/5 mile lap, as many as 20 times a day. I’ve dubbed this hiking “hamster-wheeling” thanks to the mindless repetition. My nurses claim they have never had a patient walk as much as I do.
Thus far, I’ve written this post in the first person, but that is a mistake. Jenny has been by my side day-and-night since we first learned I had appendicitis and she jumped on a bush plane back to Anchorage from Bristol Bay. I am eternally grateful for her being next to me. At no point have I felt like I am going through this alone. It has always been “we” and never “I.”
So for now we wait. We play cards and dominos, we read, we listen to the radio. We daydream about floating down the Kenai, hiking Crow Pass, listening to bluegrass at the Seaview and feeling the tug of fish at the end of the line. We wait and we hope.