It feels like everyday in the last two weeks since I last wrote could be an entry of its own, but that’s not quite true. What is true is that it has been an overwhelming whirlwind of activity and I’m not quite through it yet.
I decided to go with the trial at MD Anderson (MDA) after consultation with my medical team and my family. My medical team made it clear that I had several good trial options that it would make sense to try (with the MDA one being a little better) and that what I should consider heavily is who I wanted to treat me. I have nothing negative to say about the clinic in San Antonio, but I had such a great connection with the trial doctor at MDA. Weighing heavily in favor of Houston is also that I have friends here who I stay with and visit with, making it a far less lonely prospect than San Antonio where I have no connection. And finally, the history at MDA, even though it wasn’t 100% positive experiences, gave me a level of comfort that I lacked in San Antonio.
I am glad that I did have that prior history with MDA, because it truly is like a machine here that you get on and go wherever it takes you, and it ma have scared me enough to back out if this were my first time here. Appointments show up on your calendar and you get what you get and you don’t get upset. And then they’ll disappear and be rescheduled for a different day with the same department but somehow a different building? I found the scheduling part left me feeling unmoored, waiting to find out what was planned for me and mostly without the ability to give input. One thing on my side was that my trial coordinator was the one who knew everything I needed scheduled and how the process was going, so I was able to get some updates from her.
She was also able to help me out with my only scheduling dealbreaker – please let me be home on my daughter’s 9th birthday. I had a blood draw that was technically supposed to be that day, but she found the note in the protocol that said it could be done the day before. I do all this cancer treatment so that I can show up and be a mom to her, and I so appreciate that my coordinator saw that – those are the things that make you feel like a person and not just a patient.
It is exhausting to detail all the tests I’ve done, but I want to have it here for people who read this and want to know about trial life, and for myself to look back on. Last week I made a day trip for blood work and a set of EKGs and an eye check up, all to check that I was good for the study, and an x-ray to prove that the port I had inserted at another facility is real. I am glad I had that eye exam because it turns out that my prescription has changed a ton in the last year and I need new glasses. I came back this week for a COVID test (negative) in advance of a lung biopsy. That biopsy attempt went poorly and I had a panic attack on the table. So a second biopsy, this time with anesthesia, was scheduled for the following day. Oh, and then I had a CT. I had to spend the night because of the anesthesia, which was a good rule, I truly was in no shape to drive. I finally got to go home and spend one night in my own bed and with my family. And then the next evening I came back because I had to be at the hospital at 7:30am today.
And then there’s today. More blood work and EKGs and eye check ups. A visit with the doctor to make sure I was ready to start the trial. And then boom, the trial itself. It is fascinating to watch happen, so many moving parts that have to be precisely orchestrated. Pre-chemo blood draws timed just right before the chemo starts and then a line of EKG and blood draw folks outside because their tests need to be done within a set number of minutes after chemo ends, but with a definite hierarchy that I am not privy to. At one point I had both elbow veins accessed plus my port and the little sticky pads for EKGs all over me for later. One elbow vein is for blood draws, they do them at a different site than where the chemo is infused. And my port wasn’t working so they had to access an elbow vein instead (3rd time for that poor baby today), but left my port accessed so that the port specialists could give me some anti-blood-clotting agent. It’s been 3+ hours and they haven’t arrived, but their window doesn’t close for another 40 minutes. After that it will be too late for today and I’ll instead deal with it next time.
This is so long and I’m sure so indicative of how wearing this process is. I’m feeling better now that its underway. And my moment of joy from the past two weeks is sitting on the couch with my dad and stepmom, listening to my daughter play piano for us. I had a lovely visit with them, and hearing her play, the proof of her hard work and the thing that she loves, fills me to the brim with joy.