Hi, I’m going to tell you a story. When I had really bad GVH in December, I gained about 30 pounds (of fluid) in a week. Almost all of the fluid was concentrated in my abdomen, so I looked literally 9 months pregnant. I also had really cute cankles which was nice. Gaining that much weight that fast is extremely painful – not only did the GVH itself hurt, my entire body was swollen and my skin couldn’t stretch fast enough to accommodate all of the fluid.
The fluid accumulated primarily because, due to the GVH, I was lacking a protein called albumin, which helps to pull fluid into the veins and keep it out of tissue. The hospital would periodically infuse me with albumin, which didn’t really help until suddenly one day in January it did. I peed all night and lost 7 pounds the first day after that. I lost about the same the next day, and the next, and the next. Eventually, my pregnant belly and my cankles were gone and I was left just a scary thin human who hadn’t consumed anything by mouth in two months (except when I not-so-slyly cheated on the no water rule – which I do not recommend oops).
I think I cried every day that week. And not out of relief, but because I was terrified. What if it happened again? What if I gained all that weight back in a week again? I had one of only two panic attacks I experienced during treatment – shoutout to the resident who talked me off that ledge and convinced me that the hyperventilating wasn’t due to my lungs being full of fluid (hey, it had happened before with the messed up central line so I’m not going to call myself irrational).
Here is why I am telling you this story – I think that I tend to blog when I feel better, more in control of the situation. Over the past few weeks I have felt a lot better and I have started to catch up with friends again. People ask me how I am, they tell me it’s amazing how positive I have been. I am telling you this story because I want you all to know that you got the sugar-coated version. And none of it was a lie – everything I have written on this blog has been 100% genuine. But of course it has been affected by how I feel when I write and by the limitations of my ability to really get you in my head and relay my experience. I wasn’t writing cute blog posts while I was so weak that I couldn’t move my legs when a blanket was on top of them because it was too heavy and I had 2 chest tubes and an NG tube and a triple lumen femoral line and I sincerely felt like I would never recover. And now that I’m starting to feel better, it’s incredibly difficult to relay these types of experiences, especially in passing conversation.
As I continue to heal, I spend half of my time feeling thrilled to be somewhat back to myself and the other half terrified that it could be taken away at any moment. Throughout all of this, I feel compelled to write. I am processing my experience and want to get some of the darker stuff out. I am thinking some sort of essay series, but I’m still brainstorming. I would love to use this project to raise money for AML research. If you know anything about writing/publishing or have any useful advice, please reach out – I know literally nothing but I am starting to do some exploring. Above all, thanks for reading the blog – despite my horror at the depths of illness I have experienced, I am continually grateful for the support and for my life.
PS: bonus pic of me with aggressive steroid face ugh I hate prednisone so much