What’s Next

A lot has happened since surgery. The doctors took my staples out and my wound began to heal. My headaches went away for the most part. I started sleeping better. I started walking to the mailbox to get the mail in the afternoons. One afternoon, Alicia let me drive in to town (with her in the passenger seat) to pick up pizza. We took our dog for a few walks in the beautiful weather. A few days later I drove on my own to say hello to my friends at work. A few days later I went back to work. I’m feeling less foggy and less dizzy and less tired. I’m still scared but I’m encouraged as I continue to see physical progress.

In my last post I talked about the difficult choice I had to make regarding the next steps of my cancer treatment. I made the decision to move forward with enrolling in the clinical trial. Participating in the trial will give me the opportunity to try something new and allow for more options to fight cancer if necessary.

In 2010 when I was fighting brain cancer, I took a chemotherapy called Temodar. Temodar is a very targeted chemotherapy that attacks brain cancer with minimal side effects to the rest of the body. Other than a little fatigue, I don’t remember having many side effects from the Temodar, which is pretty incredible for a chemotherapy drug. It is my understanding that Temodar is now the standard first line treatment along with surgery and radiation for brain cancer. It was because of brave cancer fighters signing up for a clinical trial years before that made Temodar available to people like me. I am grateful for those people and I am grateful that now I have the opportunity to potentially help others diagnosed with brain cancer because of my participation in a clinical trial. Once enrolled in the clinical trial, I would be automatically assigned to either an older chemotherapy drug called Lomustine, or Lomustine plus the study drug – Eflornithine.

But I’ve got to be honest, I’m not one of those brave cancer fighter types who daringly enroll in experimental trials to help save others. People that know me best know that I’m a paranoid, anxious hypochondriac. Yes, I’m excited for the opportunity to help others by participating in the trial, but I have to admit that I am mostly considering the trial because I want to be cured, not because I want to cure others. I’m enrolling in the trial because I don’t want to die before I’m 40, confused, in pain, shitting myself, unable to move, surrounded by people crying. I want to grow old with Alicia. I want to take our camper down the street to our favorite campground for lots more summers. I want to fly back to Nepal and spend a few more weeks in the most beautiful mountains on Earth. I want to see the northern lights. I want to run a marathon (well, maybe a half marathon). There’s so many bands I haven’t seen in concert. How could I die without seeing Phish? Or Radiohead? I want to record all the songs I never recorded and I want to hold Alicia’s hand as we watch our dog take first place in the Galena, IL Oktoberfest Wiener Dog race!

And yet, no matter all the advice from the best doctors in the world and the people I love, I still have been feeling very uneasy about taking an old chemotherapy drug that is also prescribed to dogs with cancer along with a new experimental drug that is prescribed in the form of a cream to remove unwanted facial hair. I was comfortable with the idea of taking Temodar, since I already knew what to expect. So in the days leading up to signing up for the trial, I hatched a plan to back out of the trial if I was assigned just the Lomustine. Since Lomustine is already a drug approved for brain cancer, I could always try the Temodar first, and then try Lomustine if that didn’t work.

Last week we went to Mayo Clinic to get a whole bunch of tests done to establish a baseline and make sure my body is ready for what’s next. I also had my first post-surgery MRI. No new cancer growth! There is still the little bit of cancer the surgeon left behind per my pre-operation request to not go digging too far as I emphasized how important quality of life vs. quantity of life is to me. But as far as the MRI went – great news!


Resolving postsurgical changes since recent debulking of tumor. Persistent signal abnormality and mass effect in the right insula are consistent with residual tumor. -MRI Report 4/4/19

The next step was to take the elevator up to the neuro-oncology clinic to meet with the trial coordinator to officially sign up for the clinical trial. I nodded my head as he talked through next steps and patiently answered my relentless barrage of paranoid, stupid “what if” questions. I anxiously signed each piece of paper without really reading any of the details closely. I knew in the back of my head that I would be assigned only the old chemo drug and that I could drop out of this trial nonsense and head home. After answering my questions and gathering my signatures, the trial coordinator left the exam room to get my assignment.

When he comes back in to the exam room with Dr. R in tow, the trial coordinator enthusiastically announces, “Congratulations – you’ve been assigned the Lomustine with the study drug!”Of course I was assigned the Lomustine plus the study drug. No backing out now.

Despite my uneasiness about taking these drugs, there are a few things that give me solace. First, I’m paranoid and uneasy about everything. I can’t let my anxiety hold me back from everything. Second, the type of brain cancer I have is very rare. There are never clinical trials for my specific type of brain cancer, let alone specifically for the recurrent version of my rare brain cancer type. It is incredible to me that this clinical trial – designed specifically for my type of recurrent brain cancer is available now, when my brain cancer has recurred. Why wouldn’t I jump at the opportunity?

This is the experimental drug – Eflornithine. Not sure if I’m supposed to wash my hair with it or drink it.

Once we were officially signed up for the clinical trial, we walked over to the hospital pharmacy to pick up my doses of the study drug – Eflornithine. The pharmacist sits down with Alicia and I and hands us two bags of what appear to be shampoo bottles. She talks us through some of the logistics of the drug. I hope Alicia is taking notes. It’ll probably cause diarrhea and it might lower my blood counts. I can’t eat cheese while I’m taking it. The TSA might have an issue with us taking it on an airplane. Bags of strange drugs in our hands, Alicia and I headed back home.

Tomorrow I’m headed back to Mayo Clinic to drink the first dose of the shampoo bottle hair removal treatment to fight what’s left of my cancer.

7 Comments +

  1. Justin! Keep rockin my friend. Thanks for the update. You are in my thoughts every day and I’m down for any of the stuff that you said up there if you need a wingman. Except the phish thing. That’s nonsense.

    Liked by 1 person

    1. My warrior friend, thank you for so transparently sharing your journey. I think of you and Alicia daily and keep saying prayers for strength and healing. ❤️

      Liked by 1 person

  2. “People that know me best know that I’m a paranoid, anxious hypochondriac”…..This is how Jon always describes you! Well maybe not the paranoid part. Hang in there, go kick cancer’s ass one more time. Sending lots of love!

    Liked by 1 person

  3. Justin…you give us a very candid portrayal of your reactions to these scary decisions…we are keeping you & Alicia in our prayers!

    Liked by 1 person

  4. Justin, I think of you often. Whichever path you choose on your journey will be the right one for you. Sending positive vibes and love your way. Mom 2

    Liked by 1 person

  5. Justin you will rock this trail just like you rocked the cancer the first time. Just know you have a whole lot of people behind you every step of the way!! You and Alicia are in my thoughts and prayers. And sending you good vibes for what ever this trail will bring!!!

    Like

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