We have a plan

I'm a few days late with this update, but Houston really knocked the wind out of me. It's like I have cancer or something. But my mom was here last night to give me a back rub and take me out for pancakes, so I'm feeling a little better today.

Another reason I haven't posted an update is because I was still thinking through all of my options. I have a white board in my house for times such as these, so I charted out my options. Here they are:

As you can see by the big blue checkmarks, I've decided to take part in the clinical trial at MD Anderson. My liver levels were low enough on Thursday to be eligible for the trial, but they have to stay down until April 15. I will also have to pass other screeners that day. If all goes well with the screeners, I will have another biopsy done April 16, and on April 17, I will finally start treatment.

If I don't pass the screeners, I will start chemotherapy in Dallas immediately at either Baylor or UTSW.

I have felt the love in every visit, phone call, message, blog comment, handwritten note, and perfect little gift sent my way. While you are all sending out so much healing energy on my behalf, I am sending nothing but pure love and gratitude back to all of you. Cancer is not good, but the awareness of love and clarity and goodness that it creates is pretty amazing.

Houston updates

Today I was going over my medical history with a nurse at MD Anderson when she interrupted me and said, “What happened to your wrist??” She was the second nurse to ask me about it today. I assured her that I was fine, that I had accidentally poured near boiling water on it a couple of days ago while making tea but that it didn’t really hurt. A few minutes later she asked about it again and suggested I let her put a salve on it and wrap it up. I passed on the offer.

Apparently I have a high tolerance for pain. When the doctor came in, he introduced himself and said, “Well, you look good!” We talked through my symptoms and how I came to be diagnosed with cholangiocarcinoma. He gasped at my wrist and then pressed around on my tumor and asked if it hurt. It didn’t. I explained that I have pain/nausea/fatigue, especially while driving or riding or sitting, but that mostly symptoms come and go and are manageable. We talked through the pros and cons of different treatment options, and the more we talked, the more flummoxed he seemed to become.

“Look,” he finally said, “The person I see in your scans and blood work and the person I see in front of me are two totally different people. You seem vibrant and healthy, and you are here talking to me intelligently as if nothing were wrong. Based on your scans, I expected you to be so sick that you would barely be able to sit up.”

He wondered aloud if perhaps I have had the tumor for years and if I may have gotten it from some sort of chemical exposure, such as cleaning out gasoline tanks (I’ve never cleaned out a gasoline tank). He just couldn’t seem to make sense of why I am doing so well with such a gigantic tumor taking over my liver. He asked about pain meds, and I told him I take Aleve occasionally. He said he would call in some pain medication. “I’ve looked at the scans,” he said, “And it looks painful!”

Not only is the tumor large, but my liver levels are high (even though they have dropped over the past few weeks), so high that I am not currently eligible for his clinical trial. He did more lab work today to see if they have changed just in case. He also did not recommend I join the trial at UT Southwestern. One arm of the trial doesn’t include chemotherapy, which he seems to think is necessary, and it also includes a drug that has caused tumors to grow rather than shrink in some patients. No thank you.

The two options he gave me were:

1)    Do a three-drug chemotherapy in Dallas. All of the drugs have been approved and are ready to go, so no need for a trial. The chemotherapy would shrink the tumor and buy me enough time to take advantage of new developments and/or trials in the future.

OR

2)    Potentially join his trial if my liver levels are low enough, which would essentially be the same scenario as above, unless it turns out that I have the genetic marker that is targeted by immunotherapy in his trial. A piece of my liver has already been sent to a lab to determine any genetic markers, but I don’t have time to wait for the results before starting some kind of treatment.

I have a follow-up appointment Thursday afternoon to get his final recommendations after he has had time to do some research, so I'll be hanging out in Houston for a couple more days.

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.