The main thing that is going on is that my counts have stalled. Essentially, they haven't improved much since November after stalling out in October. The diagnosis is "incomplete hematopoietic recovery." Dr. Shah is recommending me, and I am currently getting evaluated, for a human clinical trial in embryonic stem cell injections. Today my platelets had made it up to 41k (the highest in several weeks), but my hemoglobin had dropped back down into the 10s and my eosinophils continue to climb. My calcium level also dropped and so did my albumin. What does all this mean? Thank goodness I have a Dr. Shah, who knows all things hematology. :) Because, clearly, I HAVE NO IDEA!! I do think that I am fighting gut graft-vs-host disease. I continue to have stomach pain and eating problems. I know that eosinophilia is a sign of GVHD. My December biopsy came back PERFECT--no cancer, no mutations, no genetic abnormalities--so the issues are not likely relapse-related, which is a very good thing.
My biggest issue in my recovery, as far as "me" emotionally, is I'm having a harder time adjusting to life at home after transplant than I anticipated. I run out of energy so quickly, and my mind is not synchronizing with my body at all. My mind has things it wants my body to get done, and my body says, sorry pal, no can do. One day I was baking oatmeal cookies, a task I love (baking in general) and a task for which I now have double ovens! It took me forever to get the ingredients out, get the batter made, get the cookies laid out on the sheets, and put into the oven. That's all I got done in the baking department that day, and it was ridiculously frustrating. Cognitively I "know" all this healing will take time, that God has a plan for me in His perfect timing, that it will do me no good AT ALL to fight against what my body needs on this journey, but it's like explaining calculus to a toddler. It's as if I am incapable of processing and understanding my limits.
I didn't expect to get as frustrated with myself as I have been. It seems illogical that I can't do more yet. I'm more than five months post-transplant. Everyone's experience is different. I have actually read stories about patients who are back to work at five months! Realistically, though, most patients who have an allogeneic transplant need a year. People who receive their own cells back (autologous) recovery much more quickly and don't generally develop issues with GVHD.
I was going to journal yesterday, because New Year's and all. But we were on the road all day long and, by the time we got checked into our hotel for the night, I was too brain-dead to write anything meaningful. However, I have taken the scary plunge of committing to write something meaningful every single day this year--whether a blog entry, or a private journal entry, or a FB post of some depth--every day I will take the time to write about my day. (Starting today, January 2nd, that is.) I sincerely believe I will write a book one day, and I'm going to use this year to set a writer's goal and stick to it. Last year I committed to writing "more" than the year before. This year, I'm taking that commitment a step further and am committing to writing daily. There was a movie a few years back with Meryl Streep and Amy Adams, called Julie and Julia, where Adams' character committed to cooking every single recipe in Julia Child's French Cooking cookbook in a year, and writing about the experience daily. As I watched that movie, I realized what a big commitment writing every single day is. And I have read about authors who write for a living, how they have to set writing time aside every single day, just like going to a job. I guess it's the only way to know if I can follow through. I've proven I can stick to a goal many times in my life. However, I've always shied away from setting specific goals as to writing.
When we were loading the car (we borrowed Mary's car to come up here, thank you Mary!) with all our stuff, my youngest (Maggie) said, "are you sure you're only going to be gone for three weeks?" The car was packed! I told her there are certain things I would take whether I was going to be gone 3 days or three weeks. I have an entire tote full of just medicine. I have a second tote of medicine that is my backup (medicine I possess but don't currently take but could be put back on). A backpack with my Christian essentials: Bible and other reading material. One large and one small suitcase for clothing. My camera bag. A tote with "stuff": chargers, extra batteries, the rechargeable batteries with charger, extension cord for the room, etc. Scott has a large and small suitcase. A shoe suitcase with our winter snow-appropriate boots. Both our laptops. Our cpap machines. I'm so glad we're here. The drive isn't that bad if we break it up into two days, but it feels good to be here, unpacked, and ready to launch the next phase of this transplant adventure.
I have been asking God to help keep me focused. That's the main prayer request I've been sending. I'll be doing my evening prayers, which always start with the Lord's Prayer, and lately I get through the prayer only after 2-3 tries because my brain darts off. Then I do my gratitudes and prayer requests for others, and finish with my nightly "talk" with God. Since I've been home I've had difficulty setting aside time for my Bible reading and study. In the mornings, the kids are always awake before I am (they are on Christmas break), so I awaken to sounds of active, hungry, noisy children. By the time I get them situated, take my morning blood sugar readings, and then eat my breakfast, my day has hit full speed. When I get home, and they get back in school, I must get back to reading my Bible in the morning. For one thing, I absorb knowledge much better in the morning than in the evening. Most times, by bedtime, my brain has shut down. For another thing, I am swimming in guilt many days because I haven't given God enough of my time. So that's part of why I'm asking Him to help me stay focused.
For those of you out there who pray for others, I have a very special friend named Leslie who has been diagnosed with stage 4 renal cell carcinoma. She is having surgery next week to remove one of her kidneys and both of her adrenal glands. If you could add her to your prayers, I would appreciate it. She is loved by many, is fiercely family-oriented, and I hate that she's even sick because she means so much to so many (which I know we could all say about the special people in our lives), but I believe in the power of prayer. I feel as if I've had the entire country praying for me, and I would love for people to pray for her as well. In fact, I know she has prayed many times for me. :) Her surgery is the 9th.
My gratitudes today include my support system, including hubby Scott; my brother Paul and his wife Mary, who are loaning us a reliable car for this trip; my brother George and his wife Michele, who are paying for my transplant house costs; the children's godparents, Rick and Jeanne, because Rick is taking care of the kids while we're gone; my mom, who continues to heal from her heart attack and bypass surgery; to Mom and Lee for loaning Paul and Mary their small Chevy so Paul and Mary could loan us Mary's car!; and many, many more. I praise God for every day I am alive, and today I also thank Him for the nice weather we had during our drive up here. It was COLD, huuu-aahh (imagine the Marine tone), but no snow or ice on the roads, and lots of sunshine. (I'm also happy that the OSU Cowboys won the Liberty Bowl this week, tee hee.)
May each of you feel God's radiant love! In Jesus' name, Amen!