Home Sweet Home

As of 7 pm last night (Monday, 9/7), I arrived home to the little hamlet known as Minier. I had spent 24 days in the hospital where I was taken care of so well by caring professionals. But if I'm being honest, I was very ready to go home!

I had known since Thursday that I could be discharged on Sunday or Monday. My blood counts were rising so quickly, and my side effects were being managed and simply had to run their course. Unfortunately, on Friday I began experiencing immediate and severe cramping, aching, and pain in my legs - mostly behind my knees and down the calves - when standing in place on my feet. It was not as bad nor even appear if I could quickly stand and begin walking. But as soon as I would stop walking and stand in place, the pains would begin, I would rush to my bed, and instant relief would happen when I lifted my legs on the bed. The doctors were a bit mystified by this - this was not a typical post-transplant symptom. Their best guess was that it was a histamine response or simply my body's reaction to the activity in my bone marrow. Typically, recovering patients feel aches and pains in their hips or thighs where the largest bones have the most bone marrow.

Because I was still struggling with sinus drainage and watery eyes from the mucositis, the doctors prescribed Claritin on Sunday, which would also help my legs if the pains were a histamine response. After a rough day with the pain on Saturday, there was relief on Sunday. By Monday, I was able to be on my feet for quite awhile before feeling the pains, and the pain itself was declining in intensity when I did feel it.

Over the weekend, I also noticed my sense of taste was becoming impaired - I'm not sure I can accurately describe the change. Even water tastes completely bizarre. I don't especially love eating anyway, so now it really is a chore because the food doesn't taste the way it smells. I have noticed I can still taste sweetness and spices, so some things are better than others.

Late Sunday afternoon, I discovered what appears to be a mild rash on my chest. It does not itch - just little bumps and some red inflammation. I alerted my nurses because a rash is a sign of graft vs host disease, a condition in which the donated stem cells attack something harmless in the host's body because they have incorrectly perceived a problem. Monday morning, the doctor team examined the rash, which had spread up towards my neck and shoulder. They prescribed medicated cream to be applied twice a day. They were not sure if it was symptomatic of the disease.

Last week when my discharge days were determined, the discharge process was activated since I would likely be leaving over the holiday weekend. I began receiving information for what to expect when returning home, including my first weekly clinic visit. The appointment was scheduled for tomorrow, Wednesday, 9/9, beginning at 9:45 am, but I was told it could be pushed out to later in the week based on the doctors' recommendation. When the rash popped up, the doctors requested I keep the appointment so I could be examined again sooner than later. The doctor team was extremely apologetic, understanding that it would be a quick turnaround and the fact I live 3 hours from the hospital. But I understand the risk if the rash is indicating something serious, and so tomorrow, my brother will drive me to Chicago. If all goes well and on time, we could be home by mid-afternoon.

It has been wonderful to be home, but it is an adjustment. For several months, I was working toward going to Chicago for the transplant. Now that goal is met, so I am wondering what the next goal will be. Maybe it is simply to get back to school!

Prayer Requests

• Pray the rash just an odd reaction of my skin - not a sign of graft vs host disease.

• Pray for travel safety tomorrow and for future, weekly clinic visits.

• Pray the decreasing mucositis and leg pains completely disappear.

• Pray for my mental health as I adjust back to life at home.

• Pray for other stem cell transplant patients who suffer more severe side effects than I have - may their medical teams quickly diagnose and provide relief when it is most needed.

Shout out to Diane for requesting a photo of me wearing my wig! The hair color is slightly lighter and redder than my natural color. The difference wasn't planned - it was just the way the selection process worked out.

My new full time job is managing my prescription pills. This is my breakfast serving. I take pills five other times per day, but just one to four pills at those times.