Thursday, January 10, 2013

Day 72- Side Effects

Muscle cramps.  Fatigue.  Sunburn.  Side effects.  That's what seems to consume our days as we creep closer and closer to day 100 in this wet, rainy, cloudy, yet beautiful city.  The side effect management also seems to be ever-changing, compelling almost daily trips to the drug store to try our luck at a new remedy.  Excruciating muscle cramps keep Dan awake throughout the night and continue to throb during the day, further contributing to an already present fatigue that keeps him from feeling like himself.  He wakes up feeling tired then works hard to be active so he can take a nap in the afternoon when the exhaustion really kicks in.  On top of that, his muscles have all but completely deteriorated from the prednisone, so he'll get some physical therapy at the clinic to keep his muscles from wasting away any more.  The UV treatment that manages the GVHD rash has caused some pretty uncomfortable sunburn that now requires full body aloe and moisturizer massages twice a day (funny, I haven't heard Dan complain about them yet!).  Another nuisance in our daily routine is two, 2-1/2 hour infusions of IV fluid with quite a bit of magnesium to supplement a magnesium level Dan isn't able to maintain - yep, that's a normal medication side effect - and, yep, magnesium infusions have side effects, too.  On top of making him run to the bathroom every hour from the fluids, the magnesium makes Dan feels very flushed and hot, turning his cheeks bright pink.  While I assure him he looks cute, he's not buying it.  I guess the gist of it is, Dan's tired, he's weak, he's sore, he's in a variety of types of pain at any given time, he's anxious, and he's ready to feel better.

It's easy to see why our team keeps such a close eye on Dan - turns out this whole bone marrow transplant thing is really very complicated.  Things are going as well as can be, but while the donor marrow and Dan hash it out, his poor body gets quite a beating.  Dan's progress has plateaued somewhat from the leaps and bounds of improvements he made soon after the transplant.  He feels so much better than he did a month ago, but still doesn't feel completely normal.  We've been at this a long while now and feel at a bit of a lull. 

Although we're pretty much "over" dealing with all of this, I assure you, we're still finding our little joys.  We always feel at least a little anxious watching a rash, treating a rash, hanging IV fluids, meeting with doctors, nurses, nutritionists, pharmacists, not to mention the always-looming fear of relapse, but despite all of that, our life out here is pretty great.  We spend nice, quiet mornings drinking coffee and watching the news, fun afternoons exploring the city, and relaxing evenings catching up on shows or playing a game.  We get to spend every minute together and have developed a whole new language from all of the inside jokes we've made.  We treat ourselves to coffee, dessert, and snacks anytime and and have no where to be except a couple appointments throughout the week.  We feel the love from all over the country through mail, packages, texts, and emails, every day.  All of these things make managing the side effects a lot easier.  This is why we're here.  This is our job.  Dan is a patient and I am a caregiver. 
We're gearing up for a visit from my brother, Evan this weekend and are looking forward to showing him around our new home.  Soon after he leaves Dan will have his final biopsy before we can make plans to move back home! It's not scheduled yet, but start kicking up the prayers that things continue to look good.  ALL is well and we'd like it to stay that way :)

Much love,





  1. My Goodness, Dan! Where did you find this girl??!! Prayers are still with you lovebirds, from Aunt Ann's friend.

  2. Keeping the prayers coming to you guys! We'll be in touch again soon. :)