Powerball Numbers Yes, HLA Matching No
I’ll get to Powerball numbers in a bit, as I had lab tests yesterday. Of course the big news of the week we were waiting on is the Bone Marrow test between my sister and I. I checked in with my BMT coordinator today and unfortunately we don’t have results yet. It’s quite possible that we will have results on Monday. Little scary to think about. On Monday, I could be in the fast lane to SCT. I could also be in a lane that links me up with a complete stranger. While the sister lane is preferred, really any lane that leads to a cure is fine with me.
Baby Come Back (As Sung By Dan Evans)
I give Dan a hard time sometimes. Really, it’s not easy being CEO of a multi-billion dollar company. But I will give the man this…both times I’ve know my name to come across his desk, he’s taken action. The first time was via the referral of a friend for a job at IUH. Sure enough, I got a call directly from HR saying “I’m not sure of the connection, but I have an email from Dan Evans asking that we are sure to interview you.” And then I spent a great 10+ years working at IUH.
Perhaps my name has crossed Dan’s desk sometime between then and now, who knows, but I know for sure it came across his desk after I (almost) broke up with IUH. And I appreciate Dan taking action. Loud and clearly, I can hear Dan singing “Baby Come Back” to me. I was contacted by a very nice manager in PFS and we had a good conversation about what had occurred, my previous difficulties, and improvements PFS is making. It is these improvements that are most important to me. I don’t want to be treated like a number. I don’t want my issue to fall on deaf ears because it has been heard before from other people. This is my issue. It is new and unique to me. I need to be treated like a patient and not a number. Thankfully Maria in PFS did all that an more. She was able to resolve the discrepancy between what IUH was charging me and what I should have paid. The whole thing has been resolved to my satisfaction and I’m looking forward to some of these issues being in the past with improvements that are coming to PFS processes. I won’t be breaking up with IUH anytime soon, as I still believe in the great things they do. Truth is, I can’t quit you Dan.
You might have heard of the book “5 Love Languages.” When Lindsey and I were engaged, we read the book and I even think we took some love language tests to find out each other’s language. Love languages are real and should be practiced. However, when you are married with 3 young kids, the main love language we seem to deal in is survival. We look at each other and divide on conquer what is out there. I’ll get the 3rd pair of wet panties, you get the raspberries out of the carpet. I’ll flush Tucker’s eyes out with water since he tried to smell the cinnamon (true story) and you get Natalie off the laundry basket that Sydney is trapped under (another true story). Survival may not be the right word for how Lindsey and I work together, but we are most definitely a team. I love you Lindsey Bear and I wouldn’t want anyone else by my side. We will get through this and come out stronger on the other side.
Loving Your Wife
I try to love Lindsey the best I can. One way I do so is to love her as soon as she gets home from work. Not in that kind of way, because neither of us have energy for that, but in little things I can do. Yesterday Lindsey picked up a 2nd shift. She’ll probably tell you when I courted her that I promised she would never have to work. While I don’t remember those exact words, the truth is we’ve managed our budget and have been blessed so that she only works one day a week. That one day is time away from the kids, time with adults, and time taking care of little preemie babies. A job she really loves. Unfortunately it’s also time for the house to get out of control.
Things have changed a bit, and the reality is Lindsey will be working more. There aren’t many things I can do right now. I can’t take care of the kids very well. I can’t make meals. I can’t mow or fix things around the house. But I try to do the things I can do. The little love languages that build into the language of survival. Yesterday I knew Lindsey would be home late after work. She needed to go to the store. I knew I had a bit of energy. So after my mom got the kids to bed and headed home, I cleaned. Not the deep clean sparkle kind, but the “hey my hemoglobin’s low, but we’ll give this a whirl” kind. Coming home to a clean kitchen puts Lindsey’s mind at ease. If the kitchen was clean, I could be just beyond said kitchen putting out a fire with a ravenous dingo attacking the kids, but I’m pretty sure the first thing I’d hear in that situation as she comes through the door is “oh, the kitchen looks nice.” So while I can’t do many things honey, I promise as I vowed almost 9 years ago, I will do all that I can for you. Some days it may only be a slightly clean kitchen when you come home, but I’ll always give you everything I have.
A Minor Update
This update is actually quite overdue. I had actually totally forgotten about it because it hadn’t been staring me in the face anymore. You may recall my lapse of judgment when getting admitted and how I forgot to pack proper grooming tools. That damn little nose hair would stare me down every time I got up to pee (and as you know, that’s a lot). But when I got home, the poor little noise hair didn’t stand a chance. He might have been trembling. It might have just been my shortness of breath. But he gave a few wiggles as I took the trimmers and cut his life short. But don’t worry little nose hair, you won’t be lonely for long. The chemo will ensure all your little brothers and sisters join you soon.
And the Powerball Numbers Are:
I get my labs drawn on Mondays and Thursdays. On Monday’s I get my labs drawn in clinic when seeing Dr. Cripe. On Thursdays I go to a Labcorp office just a few miles from my house. I can’t tell you how much easier that is than driving downtown for labs. I do miss driving downtown for one reason though. I had a great group of ladies at the MH outpatient lab who drew me for 8 months during my first battle. I knew them all, sometimes they called me “Norm” because I was there so often. I kinda wish I could see them again, but ladies if we are going to make that happen you’re going to have to apply at Labcorp. The drive is just too convenient.
So whites are a tick down and they don’t have many ticks left to give. I can feel my hemoglobin being low. Kinda like I’m a chain smoker. Can’t really do much or walk far without being out of breath. I haven’t really tested out my platelets, but let’s just assume if I got a cut the bleeding would stop.
A Duck Dynasty Prayer
The journey is long. The steps seems short. But they will add up. Little steps. Little milestones. Little victories. In the little setbacks, you will be my refuge. We will journey together. One foot in front of the other. One prayer lifted. One door opened. Father God I thank you that we go through this together. I thank you for another day.