It’s been a minute

I’ve “written” so many posts in my head since my transplant but obviously never got my hands to follow through. Then it has been like the proverbial horse that I just couldn’t get back on because the longer I avoided it the harder it got. The long and the short of it all was that this transplant just about broke me. It has been much harder on me physically, mentally, emotionally, all the things. I’ll try to rewind a bit and give an overview of what healing has looked like for me the past six months.

While I wasn’t excited about my stint in the hospital, I felt prepared. I had done this before. I knew what to bring. I’ve got this. I didn’t have this. A month in the hospital is a long time and that can do things with your mind. I had plenty of crafts and things to entertain myself with, but I felt like doing none of them. I was much sicker in the hospital than I was for my first transplant. I didn’t have that same energy. I felt trapped. I was very depressed. It was a very very hard time to get through. I was barely keeping my head above water mentally and didn’t know how to share about that. At one point I made the doctors a power point presentation (citing medical journal articles) as to why they should let me go home. I was losing it. I did continue to meet with my therapist throughout this whole time – something I would encourage anyone in a similar place to do. Even if you can’t talk to everyone, talk to someone.

My body took a huge hit this time. I lost a lot of weight. My muscles were so weak. I couldn’t walk up stairs. I fell several times. I got worn out walking from one end of the house to the other. I had to start taking the elevator when I went to my appointments – which was a huge hit to my pride. It felt like my energy would never return. Every little thing was just so dang hard.

Then one day I was at the cancer center and had appointments both downstairs and upstairs. Without thinking I walked right up that winding staircase like it was nothing. I got to the top and forgot that I “couldn’t do the stairs” anymore. And that is how healing has been. I will be surprised here and there that I have accomplished something that several weeks or months ago I couldn’t. The process is slow. I mean real slow. But I am continuing to move forward. I have had several infections and hiccups along the way, but The Boss and his crew always have a solution. He has been so encouraging of me getting the store open and came to see it in its first weeks.

oh yeah, and I opened a whole store. Truthfully this store has been a huge part of my healing process. It has given me something to focus on that is new and different and has NOTHING to do with my health. I have been able to watch this idea of mine come to life and breathe new life into our community. One of my main goals in opening the Mercantile was to create a place for people to gather – and gather they have! I could write daily on the sweet moments and mercies I get to witness just slinging coffee and such. Too many great stories to start in on this post. The store has been such a blessing to me and to so many others. I feel privileged to be at the helm of something so simple yet so powerful.

How’s Gus? He is living his best life as usual. He created his own latte and it has sold like hotcakes. He has learned to work the cash register and thinks he runs the place. His treatment has been smooth sailing other than a mystery fever/rash that landed us in the hospital for a week with ultimately no answers. His rash persists – sometimes better, sometimes worse – but it doesn’t seem to bother him. His counts have stayed at a good place and he has stayed well, which is what I am most thankful for. His hair has come back in – curls in full effect and no one can get enough of them. He is truly a little miracle and sunshine that I never knew I needed.

The big boys? Our oldest is still struggling and dealing with some big issues – he moved back home and we are trying to help him get things sorted out. The twins had a great fall with their YouTube channel and learned a lot about filming and editing but are now in full baseball mode. I am so proud of my big kids and am really enjoying some of our new “adult” traditions we are having around here – watching through certain tv series together, tag teaming tasks at the store, them being my drivers for appointments. While seeing pictures and Gus makes me miss when they were little, I am finding a lot about them being big that is pretty awesome too. My favorite is that they talk to us – about big things – and again, I feel privileged that they let us in on these thoughts and dreams and questions.

Where am I health-wise? Well, right now this week I have some sort of infection, my counts are in the tank and I feel pretty crummy. But we have a plan. And I keep reminding myself that the crummy doesn’t stay forever. I still have a long way to go and when I start thinking about that it is very daunting. My health is an overwhelming subject to process. But I am trying to just take it a day at a time. While I have been able to be at the store a good bit (sometimes just out of pure necessity), re-entry to regular life has been harder this time. Everything is just harder. Marsh as usual has picked up all my slack and then some. He has let me prioritize rest and that has been so wonderful. But the guilt still comes from him doing all of his responsibilities, as well as mine, AND taking care of me. He is amazing but I wish he didn’t have to be. So please keep us on the prayer lists, keep checking in on me, and keep praying that God will take this awful awful disease away from me for good this time.

until next time,
Lesley