Clinical trials update

It has been a long, busy week, and I am grateful the weekend is here. Most days I feel really good, but some days I feel shitty, and today was one of those days. Despite that, I do have some good news to share. I met with a new doctor at UT Southwestern yesterday and began the screening process for what seems like a really good trial. There was only one spot left, and I'm pretty sure the Universe was saving it just for me. I really liked the doctor and trial coordinator; they moved quickly and got me scheduled for all of my screenings and necessary procedures. 

Of course, I still wanted to check out my options at MD Anderson, but my appointment wasn't until April 17 -- past the start day of treatment on the UTSW trial. I was in a bit of a conundrum, but I decided to go ahead and tentatively join the UTSW trial and find some way to get into MDA sooner. I could always drop out before starting treatment.

After I left the hospital, I noticed I had missed a call from Houston. A voicemail informed me that my April 17 appointment with one doctor had been changed to April 2 with the doctor I really wanted to see. So, I'm going to Houston on Tuesday to learn about a clinical trial there. 

My hope right now is to be able to stay in Dallas and move forward with the trial at UTSW. I want to be able drive the 2.2 miles from my house to the hospital for treatment once a week rather than uproot my life to be in Houston part-time. I want to sleep in my own bed every night, and I want to keep working and living as normally as possible for as long as possible. However, if I feel MDA will give me a better chance of beating cancer for longer, I will go there for treatment. 

Mostly, I just want to start treatment as soon as possible. This tumor is on my last nerve.

Luck, privilege, and prayers

If I’ve heard the story once, I’ve heard it a thousand times. My dad was kid, and his big sister was bringing a date to their house for the first time. My dad stuck a whoopee cushion under the couch so that when the boy sat down to chat with my grandparents, a loud fart sound rocked the living room. My dad thought it was hilarious, but I’m sure the guy was horrified.

Well, that boy grew up and married someone else, and they had a kid, and that kid grew up and got married to a woman who was recently diagnosed with cholangiocarcinoma. Her doctor in Memphis told her there was no hope, but a friend put her in touch with a friend at MD Anderson, and a few weeks later, she was in a clinical trial. This particular trial, according to the research we have done, seems to be the best next step for me as well.

Recently, I heard something on a podcast about how people often use the word “luck” to describe privilege. I have caught myself using the word “lucky” over the past couple of days to describe parts of my cancer journey. Connections through friends and family have created faster access to better doctors than I could have obtained on my own. Obviously, I am grateful for these connections, but I can’t help but think about where I would be in the process without them. And I can’t help but think of all of the people out there who, for reasons outside of their control, don’t have the same social capital.

To be clear, I will continue to seek out connections and find the right people to help me get healthy. But I think it is important to acknowledge it, call it privilege, be grateful for the help, and move on with the hope that one day we will have a medical system that works for everyone. 

Some things in life really are just luck, though. I spent the weekend in Cancun with three work colleagues who, over the past few years, have become real friends. I am grateful that our paths crossed and that I get to work with them and learn from them and lean on them everyday and even sit on the beach with them every once in a while. 

And, finally, maybe some things aren't luck or privilege. Maybe some things we manifest ourselves through love and prayers and the energy we put into the Universe. I feel great, my liver levels are improving, and I can't help but think that that has something to do with the collective energy all of you are putting out on my behalf. Thank you! 

Next steps

Quick summary of oncologist consultation: My best course of treatment seems to be getting into a clinical trial. My favorite choice is to join a trial at MD Anderson, but first genetic testing must show that I am eligible for the trial. I don’t know how long genetic testing takes at MD Anderson (they have requested tissue samples from my biopsy already), but at Baylor it takes 6-8 weeks. The danger is that my liver function declines so much between now and the time genetic testing is complete that I have to start chemotherapy. Undergoing chemotherapy, however, would make me ineligible for a clinical trial. So, the hope now is that:

1) My liver continues to function well until genetic testing is complete;

2) Genetic testing shows that I am eligible for clinical trial at Anderson;

Or

1)    If I have to start chemotherapy and am unable to enter clinical trial, the FDA approves trial drugs for general use very soon.

There are a few other complicating details, but this is the gist. Thanks for all of your warm wishes, positive thoughts, prayers, and love.

Dreams

For those of you here for a quick update: My nurse called on Friday to say the biopsy confirmed the original diagnosis of cholangiocarcinoma, among other things. I have an appointment to see the medical oncologist this Thursday and the palliative care doctor Friday. I’m still working on an appointment at MD Anderson. I had a great day back at work today after Spring Break. I feel really good unless I drive or sit too long, and then I feel pain and am zapped for the rest of the day. It's totally manageable, though.

For those of you with a little more time: I have long had a bit of an obsession with all things existential. I really like to ponder the meaning of the Universe. Like a lot. Naturally, therefore, my favorite class of my first semester in the Doctor of Liberal Studies program at SMU was Transformation of the Psyche. The course examined the soul through the lens of philosophy, religion, and psychology. Towards the end of the semester, the professor asked us to record our dreams for a week. He said all we had to do was to ask our subconscious minds to wake us up after dreams so that we could write them down. So, that night, as I lay in bed, I asked myself to wake me up to remember my dreams. Every night for the rest of the week, I awoke to vivid dream after vivid dream.

In one I dreamed I was embarking on a camping trip with my family. At the last minute, I turned back to change shoes. When I reached the building where my boots would apparently be found, the entrance was locked. I pulled on several doors, but none would open. Finally, I found entry to a winding staircase, which I ascended quickly. As I sprinted up the dark staircase, I passed windows that offered quick, awe-inspiring glimpses of the dark, starry night. I encountered several metal doors, each of which was locked, but I continued up the staircase on a sort of hero’s journey that ended in me waking up, never having reached the top of the staircase. The dream felt like a metaphor for life, a constant cycle of ascension and discouragement and the ever-present feeling of trying to get somewhere but never really knowing how to get there. At the time I wrote that the "journey is both dark and pressing, punctuated by the occasional sight of a million shining stars and compounded by the ever-present urgency of reaching our spiritual destination before 'waking up' to our ultimate deaths." It was a bit dramatic before but seems much more prescient now.

In another dream that I had during my “dream week,” a giant, house-sized black snake slithered into the home of my childhood best friend and wrapped itself around the perimeter of a room on a high shelf along two walls. The snake was completely black, about 36 inches in diameter and at least 60 feet long. The snake’s head faced me as I walked past the living room to the bedroom, and its mouth was wide open, long sharp teeth threatening. I had no idea what that dream could possibly mean.

Today I emailed my professor to tell him about my cancer diagnosis. At the end of the message, I jokingly suggested that the giant snake had perhaps been a warning. "The shedding of its skin," my professor replied, "is a transformational process in many more senses than just one. If it was indeed a warning in your dreams, I think one of its warnings was not to leave any possibilities behind.” In my dream, I was afraid of the snake, but I walked right past it, unharmed. Perhaps the dream was a warning after all, or a reminder, at least, that the outcome of fear can have more than one possibility.

Friendship

My life can be easily categorized by geography. I was a kid in DeWitt. College in Fayetteville. Early adulthood in Nashville. Newspapering in Bentonville. Teaching in Costa Rica. Now Dallas. In each of these places, I formed deep friendships. I could tell you so many stories. I have been reminded this week of how lucky I am to know and love so many incredible people and share so many tremendous experiences with them.

Yesterday, my friend Linsley drove from Little Rock to take me to the hospital for a liver biopsy. I am totally new to doctors and hospitals and IVs and monitors and such. I’m so new that when the nurse came to discuss my medical history, she just held up a blank sheet of paper. I was mostly awake for the procedure, and I asked the doctor if I could see some of the specimen. He brought over a little jar with two small, slimy, black strips of tumor floating around inside. I was in some pain during recovery, but Linsley kept me laughing and smiling the whole day. I am so grateful she was there.

I have had way more than my fair share of great friends throughout my life, and I am grateful for each one. Those relationships get inside us and change us, even if ever so slightly. Each of us is who we are today because of the influences of the people whose paths we have crossed throughout our lives. Iron sharpens iron and all of that.

Yesterday after the biopsy, this beautiful arrangement of succulents arrived at my door.

This incredibly thoughtful gift and note are such a reflection of Linsley and her wide open heart. Pretty amazing. Thank you to Linsley and Sarah and Regan and Joyvin and Sam and to all of the “best friends” I have had throughout my life. I have read all of your messages and comments and texts this week and haven't stopped smiling thinking of the memories we made together. Nothing but soul-boosting.  

Hope and Mass Damon

When I first met with the liver specialist, he did not sugarcoat his diagnosis. After he told me that my tumor was inoperable, incurable, and that I am not eligible for a transplant, I said, “That’s three pieces of really bad news you just gave me in a row. Now is the time to say something good.” He looked me dead in the eyes and said very seriously, “I will not be giving you good news today.” While I appreciated his direct approach, my parents were less impressed. They wanted to hear, “miracles happen,” or “there is always hope.” They’ve been trash-talking him all over Arkansas ever since.

Even the nurse was kind of like, “Sorry, you’re screwed.” She told Suzanne that we should just go get drinks or something. “From now on, you can do whatever you want!” We did not go get drinks, although I have sort of been doing whatever I want.

Nurse Jane called me today all chipper and said that my doctor had presented my case at liver conference, which is basically a bunch of smart doctors sitting around a table talking about their toughest cases. Nurse Jane said that my future oncologist, with whom I have an appointment next week, said at conference that he knows of two clinical trials that might offer me some hope. “I wanted to call you personally,” Nurse Jane said. “I felt like this news was too good to be sent in an email.”

And this is why I appreciate the direct approach from the beginning. Because of Nurse Jane’s you’re-probably-going-to-die-soon stance following my diagnosis, her offering of hope carries a welcome ring of authenticity to it. 

Yesterday I had a pain-filled day, but I woke up this morning feeling great. I keep waking up really early with extreme hunger. My dad says its because I'm eating for two now. Once when I was a kid, I had a beautiful Persian kitten, but I couldn't think of a name for her, so I just called her kitty. She turned out to be a really awful cat. I always thought it was because I never gave her a name. 

So, give me your best tumor names in the comments. The best (and only) one I have heard so far is Mass Damon. Go!

Freedom

I did a quick Internet search of the most common feelings one feels when diagnosed with terminal cancer. I was trying to find out if I am the only one who feels just the slightest bit of relief. Apparently, I am.

A few years ago, I had a tiny, little identity crisis of sorts. I was in my late 30s, unmarried, no kids. It was the perfect setup for a life of freedom, but I was starting to panic because I wasn’t taking advantage of that freedom at all. I should be traveling the world or something, I thought, but instead I had been living in boring Dallas for seven years, just working and going to school, all the typical stuff. Suddenly I found myself launching a new school with the idea of seeing it through until our first class reached 8^th grade – 6 more years (gasp!). Life was really good, but I knew I had jumped onto a hamster wheel that I wasn’t going to be able to jump off anytime soon.

The school opened, and I am surrounded every single day by a staff of powerful, dynamic women who inspire me to do and be better. I have 460 girls whose faces light up when they see me in the hallway, who give the best hugs, who can’t wait to tell me all of the random things. I work with the most incredible leaders, who are among my best friends and a constant source of love and laughter. My niece and nephew live just up the highway, and watching them grow up and forming bonds with them is simply incredible. These are the soul-boosting, spirit-lifting things that bring so much joy to my life.

But, still, life is sort of a trap. For every soul-boosting moment, there is a soul-sucking one – bills and deadlines and exhaustion and conflict and social media and politics and the ever-ticking of time and on and on and on. Life lures you in with all of the shiny things (see previous paragraph), and then forces you through the slog day in and day out. It is wonderful and horrible all at the same time.

Then I found out I have cancer, and my first thought was, “Finally, now is my chance to get off the hamster wheel and make the most of life.” I spent my entire day yesterday communicating with people that I love and admire, telling them just how much I love and admire them. Nothing but soul-boosting. I have heard that we should all “live like we are dying,” but it doesn’t really work like that. You can’t live like you are dying if you aren’t actually dying.

Cancer is scary, and I don’t know what is going to happen next, but rather than see in it impending death and doom, I see the rare opportunity for life – pure, unencumbered life, even if only for a short time. And when I find some treatment that works, I’ll happily jump back on the wheel, spinning, spinning, spinning, but with my soul filled all the way to the top.