I’ve mentioned before how surprising it has been to find myself feeling blessed and fortunate for going through an experience like I am. But there’s no denying that it’s true. And yesterday was just another example of this. I received a gift yesterday that is, without question, the most moving and touching gift that I have ever received. And it’s a gift I would not have been given were it not for my tumor.
Over the last couple of months, my family and friends Derek Briggs and Gina Winkler have collaborated on what you see in the picture attached to this post. They took the MRI scan from when I was diagnosed and turned it into a version filled with words provided by Julie and the kids. The words are a mix of memories of our life together and spiritual/inspirational passages. It’s the things they want me thinking about while I undergo my radiation and chemo treatments. This took a tremendous amount of time and effort to put together and there’s no way I can really ever thank them enough.
There are several things about this that I love:
The people who created this are among the most precious to me. It’s an expression of love that only reinforces how I feel about them.
Every one of us will go through struggles in life. And yet, personal growth comes from understanding how you can take those challenges and find the good in them. I can think of no better expressiong of turning a negative into a positive than this artwork.
It’s reminded me of things I had not thought of in a long time. In the hustle and bustle of the day to day, it’s so easy to get distracted away from what really matters. These words help remind me to be aware of the long arc of life and how wonderful that gift of life is.
So once again, thank you tremendously Julie, Matthew, Cassady, Derek and Gina. I’ll never be able to say thank you enough, but I hope I can return the love you’ve shown me and live up to this most amazing of gifts.
It’s been awhile since I shared a status update on things. Here’s the latest.
After meeting with the Robert Cavaliere of The James Cancer Hospital at Ohio State, he laid out a few different things to consider:
At 47, I’m a bit older than the median age for people who get gliomas. The older you are, the worse your prognosis and the more aggressive you typically want to be with treatment.
My tumor has certain genetic markers (1p/19q deletion and IDH positive) that research has shown make treatment more effective.
Even though my tumor is considered a grade 2 tumor, there’s more of a spectrum to tumor severity than the discrete grades of 1, 2, 3, and 4 implies. Gliomas can (and frequently do) increase in grade over time. And there were things in the pathology for mine that indicated it was early in the process of trying to move from a 2 to a 3.
If we chose to do nothing but observation, I would very likely be looking at my tumor recurring sooner rather than later. Recent research suggests that this would portend lower overall survivability. While that may seem obvious, it has not always been so clear.
Other recent research makes it pretty clear that early treatments including both chemotherapy and radiation have better results than radiation only approaches. There has been little research done yet on chemotherapy only as an early treatment approach.
Given all of that, he said we had three rational choices that he could support.
We could wait until the tumor recurred and then move into a chemo/radiation treatment at that time.
We could get aggressive now and start right away with both chemotherapy and radiation.
We could get aggressive and try “the road less traveled” and do chemotherapy only, saving radiation for when the tumor recurs.
I’m someone who’s much more comfortable being proactive than waiting, so that ruled out the first. Given that there was more research with the second than the third, that’s what I have chosen.
This morning, I had a planning visit with the radiation oncologist. I got another MRI done and was fitted for a mask that I’ll wear during the treatments. The mask’s job is to keep me absolutely still during the radiation treatment. I had to lie still for 30 minutes today while the mask dried. It was pretty difficult, but I now have options for what to wear at Halloween.
My radiation treatments will begin on or about July 21. I’ll have them 5 days a week for six weeks. Each treatment will be relatively short – less than a half hour appointment of which the radiation zapping itself is only a couple minutes total.
At the same time, I’m going to start a course of chemotherapy. This involves taking a Temodar pill along with anti-nausea and antibiotic pills in the evening. It will be an everyday thing during the course of the radiation treatment. After that, I get a month break and then move into a mode where I go through 6-12 monthly cycles of 5 days on, 23 days off with the Temodar.
My understanding is that most people tolerate both the radiation treatments and the chemo pretty well. I’m not expecting to have my work affected beyond the simple fact that I won’t be able to travel for at least six weeks while doing radiation.
I still feel very fortunate for how well things have gone so far. Love and prayers from all of you are no doubt a big part of why that’s been so. Thanks so much for your continued thoughts.