River Bank Update
The River Bank is less than 2 weeks away. Couch to River Bank plans are getting tight, but very manageable for the 5k Run / Walk. Most people walk 3 miles over the course of the day, so just consider housework, employment, or shopping part of training if necessary.
We have decided to use the imwithcraig River Bank after party as a fundraiser for the Northwestern Brain Tumor Institute. We are going to donate all the money raised from T-shirt sales and the imwithcraig River Bank party to the Institute. Now, I do have some reservations about supporting the Wildcats. I went to MSU and then UM. I had my surgery at UM and radiation and follow-up at Spectrum’s Lemmon Holten. Heck, I’m back to work at Spectrum Health. However, the best clinical research trial available to me at the time was in Chicago. Research generates new therapies, and glioblastoma multiforme certainly needs advancements. And those trials are expensive. If things go well, this therapy will be standard front line therapy for patients from Rutgers (why are they in the Big Ten?) to the University of Nebraska (that receiver wasn’t pushed out on the last drive). Of course, Grand Rapids patients will benefit as well (even if the prefer Ohio State).
After the River Bank race, we are going to have a party in the parking lot of Lifestyle Kitchen Studio at 222 East Fulton. You can park across the street in the First United Methodist Church parking structure. There will be a raffle and silent auction for a ridiculous amount of donated items. I’m always surprised by the generosity out there, and there are a few items I may not choose to part with :). I will have a mostly complete list in a week on this blog, but examples include swim lessons, autographed copies of a new book by cancer writer by Mary Elizabeth Williams, gift certificates, and assorted things I like. Or, you can just come for the food, company, and drink. The party will start at about 10:30 or 11AM (the 25K doesn’t start until 8:30AM, so there will be plenty of stragglers).
4/29/16 marked my 6 month date from diagnosis, a 6 month survivor if you will. Am I obligated to say time flies? It has, but on the other hand, those early days seem forever ago. I am truly grateful to be doing as well as I am, and still try to appreciate the little things despite getting into a stable routine. I am unlucky (brain cancer) and lucky (my current health, support) at the same time. I am more aware that my health (or anybody’s health) can change in a moment, even in the middle of a sentence. Sure, I do not feel great with the temozolomide pulses, and certainly have fatigue if I “did too much,” but I am feeling better than I could have hoped for. I signed up for the River Bank 11/2/15 not knowing what sort of shape I would be in 5/14/16. At this point, I’m thinking pretty good, thank you.
After my last stable MRI in April, I knew I would stay the course on my current therapy through the River Bank. With two weeks left, I am not looking for some victory over cancer: I’m looking forward to making it hurt a little bit. I am actually worried I will get carried away, take it out too fast, and that will be my downfall. Even if so, I’ve seen t-shirts that say ‘better to burn out then never be on fire at all.’ Well, that will be my excuse if you see me walking up Fulton toward the finish. My pulse of temozolimide was supposed to start 4 days prior to the River Bank. Working with my study coordinator at Northwestern (yes, I got permission for a study deviation), I am taking my temozolimide a few days late this cycle, and starting the pulse 5/14/16 (the evening after the River Bank Run). Who knows, maybe it works better that way.
I think about my diagnosis all the time, but not like I used to. After 6 months, I only rarely wrestle with it emotionally. It is just a fact. I drop kids off at school and watch them walk away with dry eyes. I go to soccer games and swim meets, and don’t think about how many more I will watch since I’m counting on a lot more. I have been back to work long enough that it is not a novelty. At work, colleagues and staff no longer seem surprised to see me, or feel obligated to say, ‘you look great.’ It is just the normal pleasantries of work, comments on Michigan weather, and help others with their health issues. Me? Oh, I’m fine. And Staci. We have our 15th anniversary this June 23rd, but that was after nearly double digit years of dating in 3 different towns. I don’t know what we will do to celebrate, but best keep it low key. I’m planning on a few more now.
I usually have a full day on Mondays at Spectrum Butterworth, and I quickly got back into my old routine of a the 2 – 4 PM special in the cafeteria where if you spend $2, you get a free drink (coffee). That is a $2 ice cream and a free coffee, perfect for the last push on Mondays. The ice cream is soft serve, so you can’t skimp on any toppings to get to $2. It needs to be a full cup. At home, my kids observe me just having a ‘little ice cream’ on those Monday nights after dinner, setting a good example I suppose, not knowing that this dessert was actually seconds.
I am slowly increasing my work schedule after each stable appearing MRI. I am getting MRIs every 9 weeks as part of this research protocol. Therefore, I get an 8 week vacation from serious cancer thoughts, followed by a few days of concern and denial, and then 45 minutes of labile emotions as I lay in the MRI scanner. To ease the stress, I make conversation with the MRI tech.
“I’m sure there are a lot of people who get claustrophobia in this MRI,” I said to make conversation.
“Not that much,” my MRI tech said, “they are just scared of the results.”
Can this MRI read my mind?
But fortunately, individuals can still make the whole health care experience comfortable. Shaun, a nurse working in MRI prep, recognized me on the second MRI. I am just one of many hundreds of IVs he puts in each week. He is a middle aged African American man. He wears scrubs, a loose Northwestern hoodie, and has all the mannerisms and language of smooth Chicago male nurse. And like the best nurses, he can make a scary procedure seem small and personal. With casual talk, I told him the reason for my repeat MRIs.
“Every 9 weeks while I am in the study,” I explained.
“Next time, you just come on back. If anybody gives you any hassle, tell them it’s cool with Shaun,” he replied.
First off, I wouldn’t be so presumptuous to just walk into the prep area without being called back. It would not even do me any good since the rate limiting step in MRI imaging is magnet time, not IV placement. And I am not sure what he meant by hassle. But he made me feel like an individual and an insider in a large building where you have to leave family in the waiting area. #imwithshaun.
I’m headed to Northwestern this Tuesday for one last injection of my performance enhancing drug Pembro. It should be a quick visit, just labs, seeing my nurse practitioner, and infusion. I’ll update this site again with the final details of the River Bank imwithcraig party and list of all the donations. Good night.
Figure: Left, hanging out with friends and family. Right, after 25 total years, probably good to get it in writing.