Hi all, it’s me again.
Happy Fourth of July! Independence day…but not yet for me.
I’m doing ok. Not in any major physical pain, but sick of being in the hospital. I’m not allowed to leave my floor, so we’ve been going for walks to the other side of the building where we can see the new arboretum set up in the fancy new children’s hospital and Prentice’s various green roofs. Still overwhelmed, but that’s beginning to pass as we synthesize information. So far, the most stressful conversations have been about fertility preservation. It’s also extremely odd to me that last Tuesday I was working out (with a lot of shortness of breath) with a physical trainer, Weds I was at the office being a productive attorney, and Thurs I celebrate Obamacare by landing in the hospital and promptly being tired ALL THE TIME.
The last few days have been busy, exhausting, physically painful at times, and filled with information as well as a lot of “hurry up and wait.” The bottom line remains that I have a lymphoma (still of unknown kind, but they are circling on a very likely diagnosis) pushing down on the right upper part of my heart. It is at least 12 cm in diameter (which for someone my size is, ah, large), and is currently putting pressure on my superior vena cava, preventing that particular vein from draining properly, which is causing swelling in the upper part of my body. This is the primary reason that I’m still sitting in this bed. The docs have me on steroids to try to shrink the tumor a bit in order to give my vein some space so they can put in a more appropriate IV line (picc line…google it), which seems to be working, but steroids cannot solve the whole problem alone. The shortness of breath that originally landed me in this joint has been alleviated by draining the excess fluid out of the sac that holds my heart. Heart remains fine – healthy and now beating properly with no signs of infection of any sort (cancer, bacteria, etc.).
Initial results from a PET scan (which, contrary to hopes, is not an hour of playing with poodles) show no other cancer anywhere else in my body, which is awesome. The full pathology report should come back tomorrow (gotta love federal holidays), which will then be sent off to be double- and triple-checked by various FOM (friends of Michael), but who all seem to have faith that we’re in an excellent spot. If all goes well Friday and over the weekend, I should be able to start some form of chemo over the weekend or Monday, which for the moment is likely to be in-patient, but once the vein problem is solved (after the tumor has shrunk a bit more), I should be able to go home and do additional treatments as an outpatient.
Thank you for the emails, texts, calls, balloons, love, and delightful amazingness that is coming in from all of you. I can’t express properly how much it means to both me and Michael. We live three blocks from the hospital, so if you would like to send anything, please send it to our home. If you want to deliver something to the hospital (balloons are still allowed, but they can’t be latex), I’m still at NMH – Prentice Women’s Center. Still have a great view. Still being treated very well by the hospital. Michael also showed up with my very own pink iPad last night, so I will be very happy to accept iTunes gift cards for books and music and games. As well as recommendations for books and music and games.
And PLEASE do me a favor and go outside and sweat today…until I can do it myself.
Much love to you all,
Lydia
Photo by Stephanie McCabe on Unsplash
