Title of today’s episode: “Be careful what you wish for”
The last update had me proceeding with “maintenance” chemo to help get rid of my bad cells for Connor’s good cells. We started that on Aug 6th and by the end of the week we had definitely achieved GVHD much more than desired. I was running fevers and mouth sores and didn’t do the 5th day of chemo. We had some challenges Saturday that ended up with my spending a few days inpatient at Hopkins (a MUCH longer story for another time). The doctor put the fire hose to the GVHD using steroids which resolved the fever, rash and mouth issues.
The steroids knock out the immune system which then required 4 or 5 other medications, so I’m popping pills all the time. They’ve already started tapering the steroids and making plans for the next round of chemo starting Labor Day. I’m feeling pretty good but tire easily and need to move slowly when I stand up…all things considered I’ll take it for now. We’ll check how much my blood is Connor’s versus mine next Friday. Hopefully my recent “conflagration” has pushed the needle further into Connor’s court.
So the chemistry experiment continues, trying to reach a balance between helpful and harmful GVHD. We are working on keeping positive and dealing with all the twist and turns we encounter as best we can. I thank God (as always) that I’m on this journey with Terri and her strength and support keeps me going…still love ya Babe.
Here’s hoping you all enjoy the nice weather (although we have had TONS of rain this month) and as always cherish and enjoy each day and those you love and care about.
Paul and Terri
Terri’s PS- When Paul says his encounter with the hospital is a long story…yup, but, suffice it to say, he basically doesn’t remember Saturday a week ago as he was completely out of it. It was a bit scary, but checked off a bucket list item…an ambulance trip with lights and sirens for Paul. The doctors at Hopkins wanted him checked in asap. Fortunately, my “husband” returned fairly quickly which made me very happy. He’s such a trooper that he went with me the next weekend to my parent’s house to help start clearing it out and ready it for sale. It was a stressful time for me and I was very happy to have him with me. He is still my rock!