Update

The last time I wrote, I was out of the hospital and unsure of what would happen next. I returned to Houston late Monday night and met with the doctor and his team on Tuesday morning. They decided to have me continue with chemotherapy but hold the immunotherapy drug for a week. I received chemotherapy Tuesday and returned home Tuesday night, thanks to my sister-in-law, Suzanne, who planted her feet in the doorway of the plane and refused to move until I got there. I recovered all day Wednesday with just the regular effects of chemotherapy and tried to return to work on Thursday. I only made it a few hours and spent the rest of the day sound asleep on my couch. As of last night, I am finally starting to understand how to use the pain and nausea medicine to my advantage. I think I will soon be able to tolerate the chemo a little better. I came back to work today and told all of the students in Sisterhood Circle that I am sick and that we can only exchange air hugs in the hallway from now on. I went home for a nap mid-morning but returned for lunch duty. If I can handle Kindergarten and 1^st Grade lunch duty, I can handle anything. So, I’m finishing up the day, looking forward to resting through the weekend and heading back to Houston early next week for more chemotherapy fun.

Square One

I think (maybe? I hope?) the most tumultuous time of this cancer journey is over for now. I have a plan and a schedule and am working on settling into a routine. Now I just relax and let science do its work.

I knew I was going to regret this statement when I wrote it at the end of my last post, hence the parenthetical admission of doubt. The most tumultuous time of this cancer journey  definitely came Friday when I went to the ER with severe liver pain. My liver levels had skyrocketed, but the CT scan didn’t show anything out of the ordinary (other than the massive tumor). Doctors decided the reaction was probably from the chemo and immunotherapy drug; they were just too much for my liver. I had finally, over the span of six weeks, brought my liver levels down to an acceptable level so that I would be eligible for the trial. It looks like I may not be eligible anymore. I see my doctor in Houston tomorrow morning, and we will reassess the situation.

The good news amidst all of this is that my genetic testing results came back, and I am positive for the FGFR2 gene mutation. Only about 15% of cholangiocarcinoma patients have this gene mutation. The only real treatment that has been proven to work in cholangio cases has been seen to work only with patients with this specific gene mutation. A drug has already been through the clinical trial process and has been proven to work. Unfortunately, it has yet to be approved by the FDA. I expect the doctor in Houston to talk to me tomorrow about my options as far as continuing with the clinical trial (if I am eligible) as well as possibilities of somehow gaining access to the FGFR2 drug.

I busted out of the hospital on Saturday, just in time to spend a lovely Easter with my family. Today I have an appointment with my palliative care doctor, and tonight I’ll catch a late flight to Houston. Thanks, as always, for all of the love and support. Please continue to send some positive vibes my way this week as I find out what is next in this very tumultuous journey.

Science is Real

When I was a science teacher, the first song my students and I would sing together every year was Science is Real by They Might Be Giants. The second was Put It to the Test. I’ve been thinking about both songs today throughout my first day of treatment at MD Anderson. I got into the trial and am a part of real science!

People have been in and out all day taking so much blood and doing EKGs and checking my blood pressure (while lying down, while sitting up, while standing…). I receive the treatment in the Clinical and Translational Research Center, and everything is very regimented, with tests administered and samples collected at exact intervals. I have received two chemo drugs and one immunotherapy drug today. I will continue to take the immunotherapy drug in pill form twice a day at home.

I will also continue to receive chemo on a three-week rotation for the next six months. I’ll come to Houston for treatment Week 1 and Week 2 and take Week 3 off – except for the first cycle, in which I will come all three weeks. This particular combination of chemo drugs is supposed to be very tolerable. I won’t lose my hair, and I will likely only feel bad sort of bad for a couple of days after treatment.

Chemo Selfie

It has been a busy few days leading up to treatment. I’ve done lab work, EKGs, another CT scan, and another biopsy. During the biopsy, the front of my right shoulder started to hurt really badly. It has been hurting in this spot for a couple of weeks, with pain spreading up my neck and down my arm. I thought I had just slept wrong or something. During the biopsy, I started sobbing over the extreme shoulder pain, but they were in the middle of sticking a hollow needle into my liver, so there wasn’t much to be done. The doctor told me (and another doctor later confirmed) that sometimes liver pain can be felt in the shoulder. So strange.

My sister-in-law, Suzanne, is with me in Houston today. She has fetched food for me and even gives me shoulder-to-arm massages. I’m feeling a little spoiled, but I am so grateful to her for dropping everything to be with me here.

I think (maybe? I hope?) the most tumultuous time of this cancer journey is over for now. I have a plan and a schedule and am working on settling into a routine. Now I just relax and let science do its work.

So much love

For a few weeks after my diagnosis, I found myself in a struggle: Should I be focused on dying well or living longer? If what the doctors said was true and I only had limited time left to live, I wanted to focus on the love that I leave behind. The problem is that it felt a little like giving up, like I was succumbing to cancer without putting up any sort of fight. On the other hand, if I ignored the fact that I might die soon and instead set my mind on living, I might miss this rare and wonderful opportunity to be very intentional about death.

I asked my palliative care doctor about it, and she suggested that I focus immediately on the legacy I want to leave behind and then move on to focus on surviving. I have put a lot of thought into what it means to leave a legacy, and it’s mostly about the people I love and the people who love me and tending those seeds of love so that they continue to grow well after I am gone.

I made it known to people in my circle that I wanted to fortify my legacy at Solar Prep by leaving money in a scholarship fund just for our girls. I wasn’t sure how it would work. Maybe I would need to do a fundraiser to get enough money to establish the fund. Maybe it would just be an idea that would somehow become reality in the future. I just put it out there, and on Thursday, it came back to me in a big way.

Bill Durham, a parent at Solar Prep and founding member of the Friends of Solar Prep Foundation board, surprised me by giving $10,000 to start the scholarship fund. He announced the donation at the end of an elaborate 30-minute school assembly dedicated solely to celebrating ME as part of Assistant Principal Appreciation Week. My family came into town and we sat while 460 amazing little girls showered me with love. It was hard to sit through the assembly knowing that every single person in the room deserves the same recognition. It was uncomfortable and somewhat humiliating, but it was also lovely and an honor to share the love of Solar Prep with my parents and my family.

The assembly itself was such an over-the-top-production that it truly deserves a post of its own. I’ll get to that later.

In the meantime, I return to Houston tomorrow with the hopes of getting into a clinical trial that combines chemotherapy and immunotherapy. If I don’t get into the trial, I’ll come back to Dallas to begin standard of care chemotherapy treatment. Either way, I will switch my focus from dying well to living longer. I can’t wait to be there in 2027 when the first recipient of the Solar Prep scholarship fund are announced!

Video by the one and only Rochelle Hailey