Weary

Weary has been the one word answer to the “how are you doing?” question as of lately. I’m tired and tired of. I am well into year 9 of being a cancer patient – NINE! This is almost a decade of my life and it is officially getting old. This past month has been especially tiring.

My chimerisms are down. If you are new here or don’t remember, I have two sets of DNA – you know, like the one strange episode on the crime shows where one person gets away with a crime because their DNA isn’t the DNA found on the scene….. yep, I’m a chimera like that. We routinely run chimerisms with my bloodwork. This is where they monitor the percentage of donor DNA versus my DNA. The two particular strands they check are my T-cells (immune system) and my myeloid cells (where my leukemia took place). Lately mine have been dropping below our comfortable threshold. Over the past several months I have done two separate rounds of leukine infusions to bring these numbers up. These require me to drive to Augusta daily for 1-2 weeks for a four hour infusion. These have also overlapped with my IVIG every time so that one day is 8 hours, and the combo has caused some unpleasant side effects we have to medicate against. When the chimerisms dropped this time, Boss Man decided to kick it up a notch and try a dose of DLI (donor lymphocyte infusion – aka a booster dose of my transplant cells) followed by 10 days of leukines. So for 2.5 weeks I have gone to Augusta daily and sat in a chair. We checked numbers last Monday, after DLI and 8 doses of leukines, and the chimerisms weren’t up where they need to be. I am deflated – scared – weary.

This could be a number of things and until Boss Man has a good look and a think over it, I won’t know the next steps. This could be a bump in the road, or it could be my transplant not working. I just don’t know, and not knowing has my stomach in knots. The idea of more weeks of daily infusions is exhausting to think about. The idea of another transplant is scary. The idea of the alternative is unbearable. So here I am again, waiting and praying. Praying for another tiny miracle. Praying for relief. Praying for some merciful healing of my body – for me, and for my family.

Jack and Eli’s senior year of baseball has started and I just want to go watch baseball and cheer my boys on. Gus is done with treatment. I just want to get him back in a good routine of normal 8 year old life. I want Marsh to have a break from picking up the slack for a sick wife. I want to figure out how to make my struggling business succeed (the new has worn off and sales are down).

So if you will, please pray with me. I go back tomorrow for a count check. I am praying first of all that my counts will have come up and that they will remain stable – that there will be no need to pivot again. That is the big ask. And if that isn’t the case, I pray that Boss Man will have some trick up his sleeve that doesn’t involve another transplant and another uprooting of life. Also, please pray for my business. I truly believe that little coffee shop needs to exist in and for our town – I have seen too many good things come from it – but we need more sales – more regular sales. The stress of paying the bills is more than I can handle right now on top of everything else. I need my tribe to step in and step up for me right now.

Because I am so weary……