Madison celebrated Independence Day today. (Something about the fireworks being $100,000 cheaper to do them a week before 4th of July.) Luckily, from Sam's 6th floor hospital room, we were able to see over the parking garage and across town to a view of the illuminated Capitol building and the entire fireworks display.
Sitting next to each other on Sam's bed looking out the window, we remembered buggy, muggy fireworks shows of summers past. For me, on the hill at Aquila Park with a picnic blanket and dewey grass. I remembered waiting a good 20 seconds between each one and a long few minutes before the grand finale. Sam told similar stories from the Northwoods, except his were set from a boat on Boom Lake or on Grandma and Grandpa Giles' dock at Crescent.
As nurses came in and out with nighttime meds, to check Sam's vitals and listen to his lungs, we continued watching and recalling noteworthy Independence Day celebrations. Madison's fireworks were amazing, even from all the way across town.
This year will be the year we watched fireworks from Sam's hospital room. Hopefully soon, we'll look back on this cooped up, stressed out period of our lives, and sigh with relief that it's over.
But for now, this hospital has become temporary home. We've gotten to know the array of nurses, nurse assistants and HUCs. We've made a routine and settled in with high hopes that if done right, we'll be out of here and moving on with life as soon as humanly possible - literally.
Sam is three days out from all of his chemo now. Since the effects are cumulative, his blood counts will continue to drop over the next week or so. The ones we're watching closely now are the those that fight infections and clot the blood. Since these types of cell counts are so low, it's very important that he does not get any sort of infection, virus, or injury of any kind over the next couple of weeks. This tall task of course necessitates all kinds of rules about cleaning foods really well (basically not eating raw foods from outside the hospital kitchen), not being around anyone with any type of sickness, wearing a mask anytime he's not in his room, and lots of hand washing.
Early this coming week, he'll get another bone marrow biopsy to see if his body has responded well to the chemo, and we'll all hope that all the cancer cells are gone. Even though that's still a number of days away (plus a couple more for the results to come back), our brains are starting to linger over what those answers might be.
Last time around, Sam's doctors thought he may be an early responder to the treatment. Unfortunately that turned out to be wrong, which is why he ended up requiring the long, 2-year course of chemo. So this time we're obviously hoping all went as planned, this chemo worked and we can move forward from here according to the original, shortest plan.
Aside from some headaches, indigestion, nausea, fatigue and a few rashes, he is doing incredibly well. He is still Sam. He never complains, which is amazing. Being an extremely active person, I think spending so much time in this hospital room is getting to him more than anything else. I am lucky and get to leave once a day to exercise, shower, breathe some fresh air, and make my way back. It's great to get a break, but my mind is inevitably sitting with Sam in Room 636 the whole time.
Regardless, we were both able to do some work this week, watch movies in the evenings, go for short walks, and (thanks to Sam's family's willingness to deliver takeout all the way across town) eat something other than hospital food. Anything that feels normal, even the monotony of work conference calls (no offense to our wonderful and amazing colleagues!) is welcome these days.
Anyway, thank you everyone for the continued thoughtful notes and good vibes. And to those who are able and have committed to giving blood! That is so special to see. All of it is so special.
Sam and Jenny
Today Sam felt way better than yesterday. Hooray! He was more talkative, and ate more, and didn't have headaches. This made me feel sort of like...
Who knows what tomorrow will bring, but today was a good day!
Wow. Thank you everyone for your kind responses to the Facebook post and this blog.
Many of you have asked us what you can do to help. We really appreciate all your offers. Right now though, we're mostly waiting on this first round of chemo, so there isn't much we need directly.
However, one really cool way you could help would be to give blood. Sam will receive a lot of transfusions throughout the course of this (he's already had three today), which will ultimately help keep him alive. Since the goal is to wipe out his bone marrow, which is responsible for creating blood, he'll eventually be completely dependent on other peoples' blood. He basically already is. So, if you want to help, donating blood is a GREAT way to do so.
And... (now I'm really asking a lot) if you're a social type, would you consider posting a picture on Facebook or Instagram while you're there and tagging Sam? I think he would like that.
Thanks for considering!
Sam's been on a 24-hour chemo drip and we're now over the 4-day marker on our way to 7 full days of the stuff. Overall, he's doing exceptional, but the effects are definitely starting to set in today.
He's had a low-grade fever and headache all day. His appetite has gone, though he just said he has a hankerin' for a McDonalds cheeseburger. (And luckily, when you're in the hospital with leukemia and haven't been hungry all day and you want a McDonalds cheeseburger, YOU GET A MCDONALDS CHEESEBURGER. His Dad is off to get him one now!) His spirits are down a little more today, but we're just doing the best we can!
Last night we celebrated solstice out on the 4th floor patio and played a game of HORSE with the deflated basketball out there. You'll all be amused to know that he still beat me even though his left arm was hooked up to all his IVs the whole time. We were definitely thinking about our friends in Alaska enjoying the long, bright day. Anyone have good adventure stories to share from the weekend?
I'll try to make these posts more entertaining in the future. We're off for another walk around the highly scenic 6th floor loop a few times (.2 miles) while we wait on Sam's cheeseburger.
Hope everyone's weeks are off to a good start!
P.S. it's so great to have Birkie down here now! Thanks so much to all our Alaska friends who helped watch her, especially Emily and Zac. Sam hasn't gotten to see her yet, but having our whole little family here in Madison is good for the soul.
It's weird to write a blog about times when things are bad or hard. Social media as a whole tends to celebrate the high points - adventures, anniversaries, scenic vistas, and milestones - and ignore the uglier parts of life. I know I'm guilty of this for sure.
Sam and I have a lot to be thankful for even in these tough circumstances (that we get to keep our jobs and insurance, that we're here getting treatment with familiar doctors and close to family, that we have incredible friends supporting us, etc.). Still, it would be complete bullsh*t to say that the last couple of weeks hadn't been really, really hard.
After a week in the hospital in Anchorage, an appendectomy, flight to Madison and more tests, last Wednesday Sam was diagnosed with Acute Myeloid Leukemia (AML). This is a form of leukemia that can occur as a result of the treatment for Acute Lymphoblastic Leukemia (A.L.L.), which is what he had 5 years ago. He was admitted into the hospital last Wednesday evening and will be here for the next 3.5 - 4 weeks as he begins treatment.
Things will change as we see how he responds to treatment, but for now the rough plan is:
Though there are a fair share of ups and downs, so far Sam is doing great. He still has color in his face and hasn't lost much weight. He makes sure to get out for a walk each day (though unfortunately he remains fettered by his IV pole which he has to role around the 6th floor with him), and tries to move around as much as possible (we just played a game of cards while standing. He won.) He preemptively buzzed his hair, though they don't expect it to begin falling out until days 10-11 or so.
This morning he woke up with very low platelets (the cells that help clot your blood) and hemoglobin (the cells that carry oxygen) so he's gotten transfusions for both today. The chemo is definitely setting in and he's feeling more and more tired and nauseous, but like I said, doing great considering. Other than that, so far he's just been putting his head down and dealing with all of this with incredible grace.
Thank you again to everyone who has left us nice notes or who has offered to help. It has meant a lot and it has all been very much appreciated.
Jenny (and Sam)
It’s dark and quiet in the hospital tonight. Unlike the nightly noise and hustle in the pre-surgery unit at Alaska Regional, the hallways and patients here seem tranquil and fast asleep. Lying next to me in a new, but familiarly tiny hospital bed, Sam certainly is. I’m comforted by the silent rising and falling of his chest and grateful that he is finally getting a good night of sleep.
I must have drifted asleep. It’s 3:45am and the nurse has arrived to get Sam’s vitals. After the commotion it’s hard to fall back asleep.