Head, Shoulders, Knees and Toes

Two and a half glorious weeks. Then, the steroid injections wore off. :/

It’s been just over a year now since the joint pain began. It started popping up in my Facebook feed in Remember Last Year? Yes, I remember…thank you. It started, again, just after my CAR T-Cell trial. (I also had it after my SCT, but it had eventually gotten better.) Dr. Shah, at the time, thought it was a good news/bad news thing. That my T-cells were in there fighting the bad guys but in doing so causing inflammation in my joints. Well, that was a good story last year, but those T-cells are long gone and that story no longer holds up. So what now?

Good question. Over the last several months, doctors from many departments have run countless tests only to come up with the brilliant conclusion that “nothing appears to be wrong.” Really?! Then why can’t I walk for any length of time or climb stairs or bend and get up by myself or pick up my grandbabies?!?!!! It’s not like I’m old, and my cancer is in a manageable place. So what’s the answer?

“Chemo did it.” Well, one doctor says yes while another says no. Research tells me that it’s a distinct possibility. Is it reversible? I don’t think so. I spoke to someone just today whose friend had a double knee replacement because of chemo.

But there doesn’t seem to be any knee damage per se. And meds for inflammation didn’t help. Everyone seems to be stumped. The steroid injections helped wonderfully. They just didn’t last.

This has been almost harder to deal with than the cancer itself. We’ve gotten through the life and death aspect of my cancer…twice. We still live with it being constantly on the back burner, so to speak. We have learned how to live with my “new normal.” We are thankful for every single day!

But losing my mobility has been hard. As much as I’ve always been a mover and a shaker, it now hurts to do either of those! What pains me the most is two-fold…not being able to lift and carry my grandchildren and not being able to hike our property and all the other beautiful places we love to go. You learn to improvise, but it’s just not the same.

Over the last few years on our anniversaries, we have gone zip-lining twice, hiking in the Hill Country three times including climbing Enchanted Rock, going to Pedernales Falls, Hamilton Pool, Westcave Preserve, and countless wineries and antique shops dotted along the way. There’s more, but those are the highlights. The point is, we enjoy the outdoors and all it offers. Unfortunately, knees are a necessary component to climbing and hiking. I know that other folks who have these issues figure it out. I am just praying that my team and I can figure out a plan for mine.

May and another anniversary is just around the corner. I’m praying and planning for our next hike.