Waiting is Hard

September 2, 2020

“Mama, waiting is hard,” is something Gus has said a lot lately. Today he added, “I don’t like to wait.” Oh Buddy, do I ever know how you feel! I have had so many times in my life where I had to wait for things and was pretty well convinced that God must be taking a coffee break and not hearing me because it seemed like something that needed urgent attention to me! Well, just like Gus, I am being told I have to wait for something I was ready to get over with. I got a call from my doctor asking me if it was okay to bump me out to next week for my clinic visit and biopsy. I said, “but that will be 4 weeks since I’ve been in!” “Yes, I know, it’s okay,” he replied. I even started listing my other concerns that I was eager to talk to him about and he gave instructions on what to do. I didn’t argue. I trust this man with my life, literally. And I didn’t complain (out loud to him) at all. You see, the reason they had to move me was because they had an emergency bone marrow for Thursday morning. I mean, really, I can’t argue that. I was that girl not long ago, needing people to drop what they had scheduled for the day and keep me from dying. I won’t complain, out loud or even in my head, because this person needs Dr. Kota more than me tomorrow. I’ll follow the plan for my symptoms, pray, wait, and trust for another week. And since I know your suspense level is high, I’ll tell you what I’ve been dealing with – SUPER dry skin. Really, my whole body is dry inside and out. If ever there was a feeling of being parched, this is it. I’ve been drinking water, moisturizing, trying different moisturizers, and I’m here to tell you there isn’t enough lotion in Walmart and Ulta combined that can combat this level of dry! I spoke with the pharmacist and he and I seem to think it is my oral chemo pill that is causing it. Dr. Kota isn’t so sure that’s it, but to rule that out, he cut my dose in half for the next week to see if anything improves. Another possibility is graph vs. host disease (a.k.a. rejection). Now as I explained to my boys, this does not mean a death sentence or even that I have to have another transplant necessarily. Some GVHD is acute and needs immediate attention because it is life-threatening, but some can be mild, and some can be chronic and you just have to manage it forever. I figure this is akin to Paul’s thorn in his side. Either way, I am trying to keep my mind focused on the latter reasons and hoping that this is just a one time deal and we can figure out the cause and treat it or at least a better way to manage it. I have also had a “thorn in my side” for over a week. I think I pulled a muscle. I am sure it has nothing to do with this adorable chunk of 3yo that I pick up all throughout the day. I have gone on a strict “no picking the toddler up” diet for a few days and it does seem to be improving. For a few days, I had convinced myself that it was either a hernia or a tumor (just gotta keep it real for ya’ll!).

Anyway, enough of my rambling. Tomorrow I won’t be having a biopsy. Apparently God wanted me to practice a little more patience, and to get prayed over for an extra week 🙂 So, please, continue to lift my weak little body up in prayer, but tomorrow morning, don’t pray for me (I really just say that for dramatic effect, of course I want you to and can’t stop you from it anyway), but pray for whoever this person is that needs my time slot and some bone marrow. He or she is in much worse shape than me right now. I’ll check back in with you guys after the 10th if not before. 

(p.s. tomorrow really IS day 100 this time!!!! so I’ll concoct some sort of celebration about that)