Closer to Normal
Last summer I wrote about how I missed my Monday routine. Taking the kids to the sitter’s, going to work, picking the kids back up, spending time with them and putting them to bed. All while Lindsey worked. While I’m not quite back to that normal yet, things are most definitely progressing in the right direction.
On Monday I began to work in the hc1 office again. I’m not officially full time yet, but I am planning on being so in June. It’s great to get back to meaningful work and to exercise my mind. It’s also wonderful to be around a smart and dedicated group of people (and Brian and Corry too). I feel like a new employee all over again, but I plan to get up to speed quickly. As my time at work begins to wind up, Lindsey’s need to work part-time and carry benefits will wind down. Yes, we are most definitely making progress towards normal.
An Extended Time Away
Yesterday I saw Dr. Nelson for my routine check up. Things have been progressively getting better so there wasn’t as much to talk about. I still have a skin rash, but the itching is controlled with meds. I still have dry skin, but lotion seems to help or at least hide it. I still have mouth sores and pain when I eat, but a cough drop numbs that right up. Just the usual list of side effects. I guess Dr. Nelson is tired of hearing about it every few weeks, because he said he does not need to see me for 3 months. I’ll have labs drawn in 3 weeks, but other than that I’m hospital/doctor free for quite some time.
What to do at Night
The other nice thing about my visit with Dr. Nelson is that he is taking me off two more of my meds. I’ve still been taking the immuno-suppresant tacrolimus, but I will be stopping that on 5/9. I’m also able to stop flucanozole (anti-fungal) immediately. With those 2 changes, I officially have no medications to take at night. I only have to take morning meds now. It’s great to see fewer and fewer pill bottles on my dresser and instead of taking an amount of pills that covers up the palm of my hand, I only have a few to take in the morning now.
You may recall that we had a trip to Disney planned for November of 2015. Unfortunately cancer got in the way of the trip and we couldn’t take it. We were scheduled to go with Lindsey’s family and because of the way reservations work, they could only extend the dates out to this spring before they would lose unused airfare and resort fees. Thus, the end of April was determined to be our new Disney date. I was a little worried about traveling, but everything turned out great. I had to take precautions, as the sun can exacerbate GVH of the skin. I stuck to the shade as much as possible, wore SPF 50 sunscreen and bought a floppy hat to cover my head. The trip was almost like a “thank you” trip from God to cap off 11 months of health battles. The kids were of course amazed at all things Disney and the adults had fun too. While it may be awhile before we go back again, we have many great memories to last us for years to come.
And the Powerball Numbers Are:
My numbers keep improving. Not “normal person” improving, but they are pretty good for someone 7 months post transplant. I would still like to see my platelets come up, but I’m not bleeding out any orifices, so perhaps that isn’t necessary.
5/2/2016: WBC 3.8 (3.6 is the low for a normal range)
5/2/2016: Hemoglobin 12.3 (13.5is the low for a normal range)
5/2/2016: Platelets 122 (150 is the low for a normal range)
A Duck Dynasty Prayer
It’s hard to believe that 11 months ago to the day, I was packing a bag for the hospital. I didn’t know exactly what steps I needed to talk, but I knew you would be walking beside me. Never alone in this battle, having you by my side, was a great comfort. May we continue to walk together in health for many more years to come. Thank you God for being by my side. Thank you for holding me in the roughest of times. Thank you for another day.