On Thursday Alicia and I met my Dad at our hotel in Rochester for Friday morning appointments at Mayo Clinic.
We started the appointment on Friday by meeting with Dr. R, a member of Dr. L’s team (I wrote about Dr. L. in my last post). Dr. R is about my age. I like his tie, but I’m not sure how I feel about him as he begins to tell me an entirely new plan for my treatment that I had not heard before. Dr. R suggests enrolling me in a clinical trial. I’m immediately suspicious and confused. At every appointment at Mayo up to this point, I’ve been told that I should do the surgery, followed by Temodar chemotherapy – the same chemo I took in 2010.
Who is this guy? Where is Dr. L? Where is Dr. H? Why is all of this happening to me? But I’m listening.
There is currently a Phase III clinical trial enrolling patients with the same type of tumor as mine (More info about the trial here). The trial is investigating the effectiveness of a drug called Eflornithine. According to my research, Eflornithine is already a drug that’s made into a cream and used to treat a condition that causes women to grow hair on their face. I don’t know how I feel about that for several reasons. I keep an open mind primarily because I’ve been scared to shave since my surgery on account of my head is currently patched together like Jack Skellington from The Nightmare Before Christmas, so I’d be reluctant to risk exposing my brain to the world for the sake of a clean shave. Maybe if I sign up for the trial I won’t have to shave! In addition to fighting unwanted facial hair growth, it appears Eflornithine may also be effective for fighting the type of brain cancer I have, based on the success of the first phases of the trial. If I enroll in the trial, I will be randomly assigned to either taking a chemotherapy pill called Lomustine by itself, or Lomustine + a drink version of Eflornithine.
Dr R. explains his logic for going this route instead of the original plan. If I begin taking the Temodar and my cancer continues to grow, I will be ineligible for this clinical trial. Enrolling in the trial gives me more options to fight this thing. This actually makes a lot of sense to me.
Another doctor comes in to our room and proceeds to pluck out the staples from my head, one by one. Its hurts just a tiny bit but I am so relieved to have these finally removed! For the record, removing staples from your head is much easier than having a catheter removed. One more step in the healing process!
The clinical trial coordinator comes in to explain some more logistics of enrolling in the study. While I agree with the logic of doing it, I’m not sure I want to jump right in to making a decision. The coordinator hands me some information on the trial and we are free to go.
While I’m grateful for potentially having more options to fight cancer, I hate that I have more difficult decisions I have to make. If I’m being honest, I don’t want to take any chemotherapy. I want there to be no brain cancer, and I want life to go on as normal. I want to go back to work and make decisions about work stuff. I want to go camping with my wife and my dog and make the decision of whether to grill burgers or brats. I don’t want to make decisions like this.
Before the surgery I had to decide if I wanted to do awake or asleep surgery – a decision that would impact how much of the tumor could be removed. I made the incredibly difficult decision to take a more conservative approach, relying on the chemotherapy to do the rest of the work. Because of that decision, the weight of my next decision feels like a much heavier and difficult burden than I can handle. Because of my last big decision, the chemotherapy has to work now. Because of the latest curveball, I am questioning whether I made the right decision about the more conservative surgery.
Over the next few weeks before my next appointment I’ll go back and forth between pretending like there is no decision to make, and reading too many articles on the internet about this clinical trial – inadvertently scaring the hell out of myself. I have no middle ground. I’m either not going to think about it at all or I’m going to overthink it. Right now, I’m leaning towards enrolling in the clinical trial but I’ve already changed my mind a few times since the appointment. I’ve even changed my mind a few times today. After the appointment, Alicia and I said our goodbyes to my Dad and we spent the evening enjoying some live music from Charlie Parr!
On Saturday Alicia and I drove to Des Moines for Kathy Wennihan’s celebration of life. As I suspected, seeing my Above + Beyond Cancer family was much needed therapy. Celebrating the life of such a beautiful, inspiring woman was even better. I was asked to play a song on my guitar for the event, and I was honored to accept the invitation! I had not played my guitar since well before the surgery, but I learned that I am still able to play, even though I forgot half the words of the song. Luckily I was playing to a very forgiving audience that knows me best for never finishing an entire song.
After Kathy’s celebration of life, Alicia and I met Dr. Deming for dinner. I was looking forward to visiting with him in private about the news of the clinical trial. My friend Trace and his family also joined us. Trace and I were tent mates in 2011 when we went to Mount Everest Base Camp. He is a no B.S., tough as nails kind of a guy. He’s got bigger muscles and more guns than anyone I know. He’s not afraid to tell me to suck it up and stop being such a p***y from time to time as he sees fit. Brain cancer is no exception to this rule and that’s what I love most about Trace. He wastes no time at dinner lecturing me about my pain pills in his own Trace way.
I told Dr. Deming more about the clinical trial. He’s going to do some research on it for me and let me know what he thinks. He’s mostly concerned about potential side effects, but says he’d like to ask around about it and get me some more information for me. He encourages me by telling me that he firmly believes I will do well no matter what I decide. I always appreciate Dr. D’s wisdom. After he nearly died last summer as the result of a bike accident, he wrote this in a blog post:
I have learned that life becomes deeper, richer, and more emotional when we lean into the difficulties. Things don’t get solved; they come together, they fall apart, and come together again. We learn to put priorities into perspective. Difficulty teaches us what we are capable. We realize the strength within, and that strength grows into resiliency.Dr. Deming
My next appointment at Mayo is March 29th to talk to my doctor about my decision. Then, April 4th and 5th for my first big MRI to see how my brain is healing from surgery and to see what the remaining cancer is or isn’t doing. Also blood tests, heart, lung tests to make sure my body is ready for whatever chemotherapy I decide to take.
I can’t thank my family and friends enough for the continued love, support, prayers, visits, food deliveries, cards, energy, animal sacrifices – whatever it is that you’ve been doing on my behalf. All of it is working, cause I’m feeling a little better every day!
Easier said than done,but I find the best thing is to always trust your gut instinct and never place doubt with the decision you make but think positive. From what I know you have had the opportunity to experience many adventures and theirs so many more out there for you and Alicia to experience down the road. Sending positive thoughts and prayers your way!
Hi Justin, we are friends of your mom and Kevin’s and there are many of us here in Sioux Falls who are faithfully praying for you. Thank you for your blog so we know specifically what your prayer needs are. God bless and keep you!
Lari & George Kooi
Keep fighting Justin!!! You’ve got an army of people behind you to support you! You’ve got this! Xoxo
Hi Justin, I’m lifting you (& Alicia) in prayer regularly. I’ll pray for specific guidance on the treatment options, that you’ll have surpassing peace with one option more than the other! Thank you for being so honest & candid with your heart as you fight- keep going, friend!
Hey Justin. I want you to know I’m thinking about you, I’m wishing you the clarity and wisdom to make these hard decisions coming up with all the knowledge and foresight of the Dr’s suggestions that is best for you.
I’m hoping you find the peace of mind once you decide which way to go… know that you have a bunch of warriors on your side, your support system is massive and that kind of support and your positive attitude, clever wit and dreams of camping, work and BBQ’s…is what you’re fighting for. Life is precious and you know that…just a normal life.
I wish you only the best, I wish you healing and I wish you well.
hang in there, Justin. Wish you did not have to make these insanely difficult decisions. Sending good energy your way–Y.