Today was my weekly clinical visit at Charlton 9. I generally, and today was no exception, have weekly labs drawn, meet with the pharmacist to go over my medications and check for necessary refills, meet with the nurse coordinator, who essentially screens me to let the doctor know how I am, and then I see Dr. Shah. What was the outcome? Basically what it's been for a few weeks now: we're going to keep watching the counts and keep monitoring. We still don't know why the eosinophils are high, so we'll keep monitoring; I do have mild GVHD of the skin, which is staying under control with the steroid cream; my albumin level is still low, for three weeks now, and we don't know why, so we'll do a 24-hour urine and keep monitoring it; I'm still low-positive for the CMV virus, but we don't need to begin treatment yet, so we'll keep watching that; I am having generalized edema, particularly in my face--so much so that I look like a frog in the morning--, and we don't know why, so we'll just keep monitoring that...you get the idea. No answers, nothing critical popping out at Dr. Shah, so we'll just keep trying to figure out what all this means.
I'm a "go" for the second round of shots on Thursday. We're hoping to get me admitted a little more quickly this week. Everyone has had a week of the routine, so it should go faster, plus there's one doctor appointment I had to do last week that I don't have to do this week. I am going into this week's shots with the mindset that the shots won't hurt as much this week. :) The POWER of positive thinking cannot be underestimated. However, I'm a smart woman, and I will have my pain prescription filled BEFORE I start screaming. Hahahahaha. The study's MAIN coordinator, from out of state, was here today checking Mayo's site coordinator's work to make sure everything is going smoothly, and he received two thumbs up.
Oh, but one really exciting outcome today was that, if my platelets continue to trend upward (YES, you read that correctly, "UPWARD," meaning that my platelets trended up this week, woo hoo!), I get to have my central line removed on Wednesday before I go home Thursday!! The most exciting thing about getting my central line out, other than the obvious fact it will be nice not to have a double-lumen (meaning two separate lines) sticking out of my chest, is that I will be able to take a bath again!! AND, I won't have to waterproof my chest in order to take a shower. Talk about celebrating the small victories! This one is great. I'm really looking forward to having a "normal" body (I use that term very loosely, mind you) again. With the central line in, I feel like I'm tied to a sick person persona. Now that my hair is coming in again, and now that my central line is coming out, I think I will feel closer to well. It's another barrier, or limitation, removed, one step closer to overall health.
The weather in Rochester is mind-boggling right now. It was actually raining today. As in, the snow is melting and I could hear the pitter patter of raindrops on the roof (because we're on the third floor). It awakened me during the night, and at first I thought I was dreaming. Then, when I headed to clinic for labs earlier, the ground was crunchy from ICE because it had been raining. Just 3 hours south of us there is a major winter storm crashing through.
My plan is to be home on the 24th. All indicators point to that being a successful plan. The reason I want to be home on the 24th is (1) so Rick can head to Memphis, where the soon-to-be first-time grandpa is going to the gender reveal party (yippee, Grandpa!), and (2) so I can take Kyan to the mother-son event at his school on the 25th. So, yesterday, I'm on the phone with Kyan and I ask him if he wants to go, and he nonchalantly says, "hmm, I'll think about it!" Little turkey. The school counselor says lots of boys at this age (he's 11) are already pulling away from their mamas. I'm assuming he'll want to go. It's not a dance, it's laser tag and other games. I only get to be home two weeks before I have to leave again, so it'd be fun to spend some quality time together.
Sis Tina is coming with me next time, and right now the plan is to make an arc from Tulsa to Rochester to Norfolk and then back to Tulsa. I'm really excited to go see my brother and his family, ESPECIALLY all the nieces and nephews I haven't even met yet, PLUS my beloved Shary lives out that way now and I'm going to get to spend some time with her. Just couldn't get any better. I haven't been able to fly, really, for a while now because my platelets have been so low. Now that they're up above 50k, I get to fly. (Although, to be fully honest, Dr. Shah he thinks I would be okay flying with them lower, it's just more of a risk issue if they are below 50k.)
After April, I only have to go to Mayo every three months. And after I am reduced to quarterly visits, Scott and I are going to start meeting all these new grandbabies who have been born since I got sick! THREE to be exact. And I get to be more consistent with CR, which I am really looking forward to. The joy of anticipation, knowing life just keeps getting better, makes me SMILE.
I didn't do Bible study today, and it feels odd that I didn't. Basically, I woke up right before I needed to leave for the clinic, was gone most of the day, and then we went out to eat dinner. Got back from dinner, and I'm doing my journaling, and I'm ready for bed! However, God never is far from my mind. I'm really getting clarity on the Bible verses which tell us to pray unceasingly. Prayers aren't just about asking for things; I think they mean including God in all things. Praising Him for the good, trusting Him with the challenges, recognizing His love for me in all earthly things, and constantly being aware of how to keep Him on my radar.
I hope everyone had time for God today. I remember when my daughter, Kristy, was going through a particularly hard time, she said, "I go to church a lot. Bad things happen when I don't go to church." Even in her confused state, she knew she would feel safe and close to God if she sat in church. Bless her heart. She's been on my mind a lot lately. I don't have her contact information in my phone, no idea why, but I'm having to wait until she reaches out again. If you have a Kristy-like person in your life, I pray your Kristy finds her way back to God. If you feel disconnected with God, I pray you reach out and reconnect. Have a wonderful evening. In Jesus' name, AMEN.