Weekly Wednesday Update - 9/27/23

It’s been a little while since my last update, and to be honest these are getting harder and harder to write. Not because anything is going wrong, but because it seems sometimes like nothing goes quite right. 

Lately the chemo treatments have been weighing on me a lot. The side effects can be compounding and linger throughout the week. The cycle of the chemo treatments is wearing on me. This past week I made a difficult decision to step away from work for a time while we wait for the transplant and I am incredibly conflicted about it. I work with a really great group of people who have been incredibly kind and supportive of me throughout this entire process, and I feel guilty leaving them short handed. Selfishly I don’t want to go on leave because of the income I am going to lose as well, but we’ll get through that. I just can’t reliably feel like I’m going to be able to perform on any given day. Some days I can feel quite decent, but other days I am working hard just to pretend like I am holding it all together, and we simply don’t know how long this is going to take. 

On top of the chemo treatments, the mental and emotional rollercoaster that is being on the transplant list is exhausting. In the past week I have received two more offers for deceased donor organs that have both failed to materialize. The first of two offers occurred last Tuesday when I was told I would be on “standby” as a secondary recipient. So, if the primary recipient were to not accept the organ or for whatever reason couldn’t receive it, it would come to me. Of course, after hours of anticipation and staring at my phone willing it to ring, that primary recipient took the organ. The second of these two offers came yesterday. Moira has been feeling under the weather and we had taken her to see her pediatrician. While we were there I got the call. This one felt like it was really going to work. I was the primary recipient and the donor OR was all scheduled, it seemed like we had it in the bag. Kelly repacked my suitcase and we got legitimately prepared for this one to happen. But, it wasn’t meant to be and when the phone rang at 11:30pm last night they informed me that despite them flying out to Oklahoma to retrieve the organ that it didn’t work out. 

All that to say this is an incredibly frustrating process. While this is all happening I know I have a number of living donors that are nearing the end of that process which lately has felt like it is moving at a snail's pace. While I am down right now, and feel like this might never end, I still have hope that one of these calls will actually work out, or that a living donor will be identified soon. I’m confident it will happen, but it’s hard to be optimistic when the door gets repeatedly slammed in your face. 

So here I am again, laying on a stretcher having poison pumped into my veins after having all the hope in the world just last night that I would instead be laying in an OR or recovery room knowing that this nightmare was nearing a conclusion at least for a time.