Weekly Update #87

This week I went to MD Anderson to talk to their clinical trial team. I expected it would go like my visit to another clinical trial team a week before – get examined and leave with some trial options to discuss later – but instead I consented to a trial then and there.

It was intense getting to that consent and it turned out to be an illustrative process. When the doctor came into the room she told me a little about the trial, said she would have me chat with the study coordinator, then she’d come back and answer questions. Then if I felt comfortable I could sign the consent form. Going through the trial with the coordinator was great but I still did have questions. Unfortunately when the doctor returned she handed me the pen to e-sign my consent, told me I should get a flu shot and she’d have her nurse do it, and then she left. I had thought that at some point I would get to ask my questions but the moment for that just never came.

I burst into tears then, overwhelmed, not knowing what was coming next in the trial and still with concerns about the side effects. While sitting there I got a text from the trial coordinator, giving me her number. I wrote back saying I still had questions and she called me to try to answer them. I began sobbing on the phone to her and she told me the doctor would be right back in. The exchange we had when the doctor returned was amazing. I was really scared because some of the side effects will make it so I can’t drive and no longer allow me to be independent. I’ve gotten through the past 5 years by being independent and it terrified me to imagine losing that. The doctor really heard my concerns, addressed them with science, yet never negated them or told me they were dumb or invalid. Then she gave me her cell phone number. At that moment, I was in with her. I trusted her that she would listen to me, wanted to hear my concerns whenever they came up, and that she would help me without minimizing the emotional toll this process takes.

That said, I still do not know for sure that I will go with the MD Anderson trial. I do still have choices in San Antonio and need to chat with my home doctors to rank them. The experiences in the two places would be very different. MD Anderson is a machine where appointments just show up on your calendar, you have no idea with whom or why, no visitors are allowed unless you need mobility assistance, but it also has amenities like a cafeteria and a hair salon and a room with a gorgeous view of Houston. Also I have people in Houston. San Antonio is going to be getting called to find out when an appointment is most convenient and visitors being able to join the infusion center when it’s quiet and potentially needing to get support from outside the clinic. I have no idea where to grab a bite or find a hotel, though these are solvable problems. I don’t know anyone in San Antonio that I could call on for assistance there. It is a lot to weigh and I am letting myself feel overwhelmed by it; it is going to shape what my next few months look like.

My dad and stepmom get into town today, having driven 2,000 miles in an RV to see us. I will doubtless have follow-up appointments at some clinic next week and it will be nice to bring my dad with me; we’ll have to see if we can sneak him in.

My joy for this week was a lovely birthday. It was the day I was in Houston, but I ended up feeling safe there and then came home to a quiet and perfect night with my family. I’m 37 now and this birthday, like each of the past 5, was hard-fought for.

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