I recently began my third round of the shampoo bottle chemo juice. This is the experimental drug that I am taking as part of the clinical trial – Eflornithine. People ask what Eflornithine tastes like. It tastes like flat seven up, mixed with expired cough medicine, swished around in someone’s mouth, then spit out for me to enjoy in a 40ml shot glass. It tastes like something you shouldn’t be drinking. I usually chase it with red Powerade Zero. I take the Eflornithine every eight hours (6am, 2pm, 10pm). two weeks on. One week off. Repeating for up to two years.
The other drug I’m taking as part of the clinical trial is Lomustine. I took the first round of Lomustine chemotherapy on Friday, April 26th. About an hour before I went to bed I took some preemptive anti-nausea medicine. When the time came, Alicia walked with me to my pill bottle. I have been so anxious about taking Lomustine. A quick Google search on the potential side effects of the drug will explain (If you’re interested, I found the Material Safety Data Sheet on Lomustine). It’s hard to believe that it’s okay for people to swallow this stuff. A few days before, my pharmacist called me to remind me to take my anti-nausea medicine. I was expecting this stuff to be nasty. Just as I had been preparing for the worst, Alicia had been preparing to walk through the fire with me. She stood there cheering me on and encouraging me in my hesitation to swallow these poisonous pills. Once down the hatch, we wrapped our arms around each other and embraced. No turning back now.
Once we got back into bed and began our usual pre-sleep routines of staring at our iPhones and watching old episodes of Friends, Alicia turned to me and made it a point to chat about things that she knew would keep my mind off my fear. She made me put my phone down so I wouldn’t stay up all night waiting for the symptoms Google warned me about to kick in. She was far more prepared for this night than I was. Sometimes I make fun of her for being so organized, but it’s moments like these that I really appreciate her structured ways.
Weeks later, I’m still alive. I haven’t vomited once, had liver or kidney failure, nor have I developed leukemia or pulmonary fibrosis, per the warnings from Google. Maybe this chemo stuff isn’t so bad? Each week I get my blood drawn. For the most part, my counts have been fine! My platelets and white blood cells have dropped a bit below normal ranges, but nothing unexpected. I feel more tired than normal. Like the kind of tired where my eyes are heavy and I could take a nap on demand.
A few weeks back I started to notice an issue with my breathing. Like sometimes I have trouble getting a deep breath. I had asthma when I was a kid and it kind of feels like that. I contacted Dr. R about this and he scheduled an appointment for a lung x-ray and pulmonary function test on May 20th. I’m really starting to like Dr. R. We have similar taste in music, and he answers all my dumb questions so patiently. At my appointment, my tests all turned out to be normal! I think Dr. R basically concluded that my breathing issues are attributed to either the location of the tumor, asthma, or anxiety.
Overall, I am reassured by the patient’s history and exam. The patient’s tumor does involve the right lobe which is involved with internal body sensation. Potentially the patient is having some irritability of the right insula in the setting of occult seizure activity versus hypervigilance.Dr. R Clinical Notes – 5/20/19
Dr. R prescribed me an inhaler so perhaps next time I have a fit of breathing trouble this well help. Next Wednesday, June 5th I have a follow up MRI scan to determine how the treatments are working. I’m hoping and praying for great news. I need a confidence booster!
It’s 2:00 PM. That means it’s time to take a chemo shot. Cheers!
You and Alicia are badass warriors! I marvel at you both as you navigate through the muddy waters of this unknown journey with so much hope, grace, humor and most of all, love. Being the patient is so challenging. Being the caregiver is equally so. Continuing fervent prayers for you both and sending you so very much love. xo
Love, love, love you guys SO much! -Dad & Mom P.
Hi Justin. It’s great to hear from you and read your post. I can’t imagine what your going through,but your message is good news, especially the “internal body sensations” per Dr. R’s comment. Vague, but all part of the progress.
Love you and Alicia
JoeC & Jamie
– June 5th👍
“You” got this, keep up the “POSITIVE!!!!” My prayers are with you both!
Still in my prayers love! Alicia makes a good nurse! Keep up all the good, you are getting rid of the bad. Thank you for the update.