Day+49

So yes, no news is good news… but I realize that I have been neglecting this little blog and people are wondering how our dear Scott is coping. 

We’re at day +49 today – one day shy of half way through “The First 100 Days”-  and I’d be lying if I said this past month with Scott at home hasn’t required some adjustments.

First off, Post-BMT Fatigue is a real thing. And I am glad that Dr. L stressed this side effect as being debilitating and unpredictable [or rather, should I say Scott is grateful for her stressing this] because otherwise I may not be as patient with our patient. Having your husband be exhausted after a day of doing very little, with little guys begging for attention would be fairly frustrating under normal circumstances, but knowing that he can’t help it, and that its not contrived, certainly makes a difference. Initially after returning home, Scott spent a great deal of time in bed, or on the couch as he gained back his strength and stamina. I told the kids they needed to be quiet and calm to help Daddy get better, but I am sure you can guess how well they accepted those instructions. Can you blame them? They had so much catching up to do!! There really is no easy way of transitioning back into a busy household after a long, isolated stay at the hospital, but Scott really did handle it well. I think the excitement of being home with us, and the relief of knowing another hospital stay wasn’t an imminent threat helped him ease back into the chaos. Slowly he started to get a bit more exercise, initially by accompanying Leigh and I on a stroll to the mailbox, working up to a walk around the block to our friends house for a quick hello. A curious toddler is a perfect walking partner for someone just getting back on their feet… it takes Leigh triple the time to walk the same distance. But when fatigue sets in, it happens suddenly and Scott can go from playing with the kids in the backyard, to passed out on the couch within minutes. It’s like he has been gravol’d and even with noise and activity happening around him, he will fall to sleep easily. 

The next major change in Scott’s life post BMT is the caution he needs to exercise when leaving the house – germ avoidance and UV protection are very important, and he isn’t supposed to drive too much by himself. Unless he is walking outdoors in open air, Scott must wear a mask whenever he leaves the house. Along with a mask, hand washing (in and out of the house) is so important, with sanitizer helping to fill in when a good wash isn’t possible. For the first couple weeks this kept him pretty much indoors, as masking up isn’t that comfortable, and he really isn’t encouraged to go anywhere with crowds. House arrest finally got to him though and he felt the need to get out. He decided that we would take a trip to a sporting goods sale one day mid-week, hoping it wouldn’t be too busy. While we were there Scott ran into an old friend, and was surprised when his buddy didn’t recognize him at first glance. Scott felt a bit self-conscious when he had to introduce himself, then realized that hidden behind a mask, wearing a hat, without a hair on his head, he wasn’t particularly recognizable! For those of us that have seem him regularly throughout this entire process, we’ve seen the changes happen gradually and don’t really think twice about Scott’s new appearance. Most of the time I have to work to remember what he looked like with hair. He still has the same handsome smile and beautiful eyes, but now has super smooth legs as well! Mallory-Jane is committed to rubbing Scott’s head and checking daily if his hair is growing back… she misses it. She also associates his hair growing back with him being “all better”, so she takes her job seriously each morning, and updates her daddy on his progress. FYI – his head is starting to resemble a peach with a layer of fuzz coming in all over. And it looks like the creepy stache is making a return as well.

Another responsibility the kids have taken on since Scott has returned home, is informing anyone that enters the house that they need to mask up. We have been discouraged from inviting any children over to the house until after Day 100, but the adults that visit can be prepared for Harrison and MJ to let them know the house rules.

Now, anyone that has spent time with Scott in the summer or on vacation should know that he is not a guy to wear sunscreen. I actually have a photo of a five year old Scott, sitting at the beach with Jeff and his Dad, sporting a golden tan. If he returns home after a round of golf without a sunburn, I can assume the match was rained out. So, it has been quite an adjustment for him to slather on SPF 100 [he calls it SPF Zeke] whenever he may be in the sun, along with a wide brimmed bucket hat and clothes covering up as much as possible. This is when not having any hair is handy, because I am not sure he would find a hat that fits otherwise.

So aside from the above, I am happy to report that Scott has not experienced any ill effects post transplant. Which brings me to an explanation for my ‘radio silence’…

Scott has done so well over the past six months. Dr. L is thrilled with his progress. She tells us at every visit. But we can’t help that nagging feeling that she’s not telling us the whole story… perhaps Scott shouldn’t be feeling this good, and it’s like we are both waiting for the other shoe to drop. This is not a feeling that either of us enjoy having. We were told that GVHD would very likely present in some way over his first 100 days post transplant, so I’ve been literally waiting for symptoms to pop up. Thinking, he may feel ok today but things will get bad again soon. He will have a fever, a rash will appear or he’ll start having bad nausea… or worse. I realize this negative thinking is not productive, and we have no reason to be anything but super positive. I’m just still a little gun shy I guess. And another part of me didn’t want to jinx anything by sharing that all is on track. But that’s ridiculous! Everything’s going great and everyone should know that.

Given Scott’s exceptional recovery to date, he only needs to visit the hospital once a week. At these appointments his blood is examined, and if there are any deficiencies he is given what is needed to keep him running smoothly for the week. Usually this means heavy doses of Magnesium – as the intense preparation chemo causes a depletion for a while post transplant. It’s a pain because it takes five hours to administer, but otherwise not a big deal. We’re still not able to leave the greater Hamilton area, but the cottage will be waiting for us on day 101 🙂

Our kitchen counter may look like a pharmacy, but all those meds are helping his body repair – and obviously they’re working. Scott’s neuts, platelets, white blood count – all where they are expected to be. He’s amazing. And once again I will say, the human body is an incredible thing.

I’ll be sure to keep everyone posted more regularly, and thanks again for the continued care and concern for our family.