My diagnosis anniversary date is coming up on October 29th; My 40th birthday came and went on October 22, 2016. Maybe we should have a combined party: music and laughter for me, chemotherapy for Glioblastoma (GBM).
I am winding down a year of oral Temodar pulses every 4 – 5 weeks and IV Pembrolizumab every 3 weeks. I was taking my Temodar the week leading to my birthday with the last pills for this cycle after my party. Needless to say, Sunday morning was a little rough. Last year, I wasn’t even sure if I would make it 1 year. Spoiler alert, I am doing fine.
Some days I want to talk about it, but most days just try to ignore it. Usually, I just save up my thoughts on a notes app on my iPhone and spew it all over this blog. Trump called my blog a ‘disaster’ and ‘rigged,’ but I don’t really care. I can’t help but be biased on a blog about me. As stated before, I did go to some counseling early on, but I don’t think I could really process having a cancer that is largely deemed incurable. How can you process that? “Okay, now that we worked through GBM, any other issues you would like to discuss?” I’m doing fine, that’s my processing. Long-term survivors are rare, but vocal on the internet, describing a formula for success. Whatever. I’ll take my chemo, 1 Michigan craft beer at night, a clinical trial at Northwestern, and just keep living day by day as my own statistic. And if I become a long-term survivor, I’ll quit my day job and sell out to promote my Cinnamax© cure.
I look back at my pictures on my phone on 10/28/15, and then day after on 10/30/15. The difference is stark. I have Connor in a pumpkin costume that was meant for a baby, and then Staci holding a humongous coffee mug at Bigby. We were on the way to the University of Michigan to get a surgical opinion from Dr. Hervey-Jumper. We stopped at the Okemos exit Bigby en route, joking that more coffee would definitely be needed over the next several months (this was before I got my lucky Zoloft cup). This is followed by a few pics with my neurosurgeon, my cancer on MRI, and a bunch of photos with old friends. Prior to 10/29/15, I mainly took silly pictures around of the kids or events. After 10/29/15, I tried to photographically document all the little insults of being a patient and life affirming support from family, friends after a life altering diagnosis.
Figure: Left, Connor 10/29/15 wearing his baby costume. Right, Staci grabbing a uber grande coffee at Bigby.
Life goes on. Kids start swimming. Teeth come out (of kids). Hair falls out (of me). Teeth grow back. Hair pretty much does to my pleasant surprise. I hope the GBM is less resistant to radiation than my hair follicles. Tattoos are inked. Other people become sick, most get better. Sometimes, people die despite doing everything they can. Staci’s Uncle Bob was diagnosed with stage 4 pancreatic cancer in January of 2016. He tried everything, including doctors in Michigan, Florida and Chicago, and even with some alternative treatments. He treated his cancer like he treated any competition in his life, and planned to win. At his memorial, stories were told about his oversized personality and competitive nature. In the end, it was just a bad cancer, and not really a fair competition. He leaves behind a devoted family that had a chance to say goodbye to him over several weeks in Grand Haven. He never wanted to ‘give up,’ but I was most impressed with his quiet dignity in his last several weeks.
I think it is about time to start writing Thank Yous, but probably will wait until after all my birthday presents are collected to have a real clean slate. My PCP is getting me a pretty nice rain coat, so I’ll start afresh after I receive it. I wrote one thank you letter to J. Fox, but it was returned due to an error in the address! So much for showing my gratitude. If you are reading this, Thank You.
I received a gray wool blanket that I used frequently during naps over the past winter. I thought it was from a memorable patient I knew through Grand Haven connections, but I wasn’t completely sure. And then a few weeks ago, I saw her on my clinic schedule. After our initial greetings, and reviewing for any cardiac symptoms, I asked, “Do you knit?” acting like this was a routine question that cardiologists ask.
“Gray wool blankets?” I said in follow-up, trying to get a better picture of what kinds of things she knit.
“One,” she said.
“Well, thank you.” I wish I wrote a quick thank you on her after visit summary (the printed paperwork patients pick up on the way out).
- Continue high potency statin and aspirin.
- Call the office with any chest pain (or neck pain in her case).
- Thanks for the wool blanket.
I really do love that blanket.
I did the Reeds Lake Triathlon 9/10/16, basically to show that I could. It was an attempt to shake the ‘Cardiologist with Brain Cancer’ title, and regain the title of the ‘Cardiologist that does Triathlons.’ I took 3rd overall in the Olympic distance, earning $75 in prize money, a medal, and a nice backpack. Nobody asked about my clinical status because it was obvious I was doing fine. And that was the first time I ever won prize money! The triathlon had an $85 entry fee, so I will need to do a lot of races to ever make any real money. I know several people that would have knocked me off the podium, but they either did not race or did the sprint distance. Thank you, too! (if you really want to read about an athlete, check out this article about my niece Kathryn Ackerman).
Figure: Upper left, my new backpack. Upper middle, my prize money. I thought about framing it, but I could not give up $75! Upper right, the run during Reeds Lake Tri. Lower left, the foursome after a cardiology conference (CTA, J. Decker, Tom Boyden and PCP just happy to be included in the back :). I made no promises, nor was anybody impressed. Bottom right, this is why I don’t play much golf.
I signed up for the River Bank run 207 days before the event. That’s enough time to get brain cancer, have surgery, and start training. I know from personal experience. Here was my training schedule: figure out my treatment schedule, take it easy during rough weeks, and then build during the non-treatment weeks. On the bad days, try walking around the block and call it a victory. I am hopeful that by paying my entry, it will get me through to 5/13/2017 feeling as well as I do today.
Figure: Left, Bucs pride game. One of the stars of the team wore my name. Nobody mistook Brady Jonas for me, however. Middle and Right, Trout Steak Revival at Founder’s. Pictured with Travis McNamara (banjo). Best concert I have ever been to.