August 23, 2022 – When we got married at the farm on the hottest day of the year; we never imagined ourselves celebrating our 8th anniversary here. Chilling out in the air-conditioned comfort of Mott Children’s Hospital complete with room service; a room on the 7th floor with a view. Today is Day +6 (post-stem cell transplant) for Scott. He’s no longer taking long-acting morphine or short acting oxy; his need for pain medication has been greatly reduced already.
For those following to learn more about the transplant process, he had his days of nausea and is still working through off and on intestinal issues. My greatest fear was having several days of vomiting to witness but they have so many potions to tackle the nausea that he didn’t have to suffer that way for long. Medications have given him high blood pressure and he is seeing a change in his eye sight so we had to invest in a different pair of readers. He’s been up and walking regularly and his appetite is slowly improving as his sore throat lessens. This morning he received another gift of platelets. Insomnia is a problem most nights so then some days he can’t stay awake to finish a conversation.
We’ve talked to others in the halls and even if they are here for BMT it sounds like everyone has a slightly different story and regiment. Others have taken chemo before coming here while Scott didn’t receive any until he was admitted here. The number of days of chemo also varies depending on the type of cancer. Scott is up and dressed each day and walks a lot; something fellow bloggers have indicated they felt was key in getting sprung from here early.
For me, retirement from my full-time job less than a week before transplant day has allowed me to spend almost all my time here. I stayed for the first ten days before taking a break and going home for a day and good nights sleep. Being with him 24/7 has been very helpful in a few ways. While you can summons a nurse with your call button, usually issues are more time sensitive than the average turn-around time is. Managing a tree of IV’s plugged into an electrical outlet makes urgent trips to the bathroom a bit tricky. I have a power strip on my list of things to bring back with me. That will allow him to go to the bathroom without having to unplug before taking off.
Even when he’s not feeling chatty, he says the companionship has helped pass the time. There’s a noticeable difference in the patients that have full-time visitors and those that don’t. Walking the halls, it’s difficult to see the sadness in the eyes of those that are always alone; and their bodies seem to sink into the bed. So even if your loved one has to work remotely; we certainly recommend having someone stay if you can manage it. As the caregiver, you feel like a third wheel when your patient has scheduled procedures and activities; it’s hard to know where you fit in. But when the door closes and the nurses leave you are there to help out when needed. Think of yourself like training wheels, your patient needs that extra stability you provide to feel safe after transplant. Here the window seat converts into a bed that is probably more comfortable than the hospital bed and I’m able to use the same rest room and shower as Scott. The nurses have been very appreciative of the extra eyes and ears I provide. It feels awkward at first but you will get into a comfortable routine in no time.
Sitting right on the 100-mile limit from the transplant center, we are looking for housing for the next few weeks. Nailing down the perfect place has been a challenge since we don’t know exactly when he will be released. We will have to book a hotel in Ann Arbor for a few days once we know when he will be released. Yesterday, I secured a walk-out lower- level duplex style home in Dexter for most of September. Looking for housing whether it’s a hotel or a VRBO or Airbnb house, is challenging in the Ann Arbor area during football season; most places are booked on the weekends and rates are higher as well. We decided against pursuing an apartment as after application fees and minimum lease requirements, we determined it would end up being more expensive than the other options and require us to move furniture and cookware.
Scott is heading out for a walk with Zeke in P. T. so I think I’ll go peruse the gift shop in search of an anniversary present. He mentioned that he would like a U of M coffee mug. I might be able to manage that. We have some food-gift cards so maybe we can do delivery or a Grub Hub to put some flair on our menu tonight since we have no choice but to dine in. What I would really enjoy would be a much-needed pedicure; if I can fit it into my busy schedule. It’s been years since I’ve treated myself to one and I think I’ve earned it. Happy Anniversary to me!