As things continue to progress with my health condition, we thought it would be helpful to begin communicating via CaringBridge. I’ve been experiencing some health issues over the past few months. We have not been intentionally keeping this a secret, but initially we had a lot more questions than answers. Now that we have some further clarity, we felt it was a good time to fill everyone in on the situation. Please feel free to share with anyone you like, I'm sure I left important people off the initial email blast in error. Molly will also post to Facebook.
In April of this year, I started experiencing numbness and tingling on the left side of my body intermittently, three to five times a day. These episodes (which would eventually be diagnosed as seizures) were mild but when they persisted I called my doctor and went in for an MRI right away. The MRI revealed what looked like several lesions on the right side of my brain. I was admitted into the hospital for a couple of days for additional testing for neurological diseases and disorders. The tests did not point to a diagnosis and the recommendation was to monitor my symptoms and schedule further MRIs down the road to potentially discover changes in the imaging.
Over the next couple months, the episodes starting to become more frequent and severe, to the point of needing to take seizure medication to control them. Although these were diagnosed as seizures, I do not experience what you may normally associate with a seizure. The episodes were/are mild and I never lose control of my faculties or lose consciousness etc.
We made the decision to transfer care to Mayo Clinic in Rochester, MN in early July. Similar to the previous doctors we had been working with; they were stumped as to what might be going on with me. They ordered a very thorough battery of tests. The hope was that all of this additional testing might point to something else going on in my body that was manifesting in the brain. Unfortunately all of the additional testing did not point to a diagnosis. It was also determined there were not multiple lesions, but rather one larger interconnected mass. When all of that testing came back negative, it was recommended that I undergo a brain tissue biopsy – which they felt would be the fastest way to finally determine what it is we’re dealing with. That biopsy took place on Friday, August 4th.
The procedure went well and we followed up with the Neuro Oncologist this morning. While some additional pathology is still pending, the initial diagnosis is that I have a low-grade glioma brain tumor. While that sounds scary, the good news is they can treat it and I intend to beat it!
Once the additional pathology is back, we may get a more specific diagnosis, but we can already plan on a five to six week course of radiation therapy, five days a week, at Mayo Clinic in Rochester. They are recommending something called Proton Beam radiation therapy which reduces damage to other areas of the brain. Assuming I trust them and the Ghostbusters aren’t actually showing up, we feel good about this option. There is a chance I would need chemotherapy in conjunction with the radiation therapy, which is why we’ll need all the pathology back before beginning either type of treatment. The doctors thought we would have the final results by the end of the month, but hopefully sooner. Treatment would start in the days or week after the final results are received. Our next update will be on a final diagnosis and confirmed treatment plan.
First and foremost, we have a ton of reasons to remain super positive about all of this! From a medical standpoint, we caught this early and are under the best care possible. We also can’t help but stay positive with all the support received from family, friends, and co-workers. We are so lucky to have all of you and can’t begin to thank you enough for all the good vibes and support we have already received. We also have to give a shout out to two sets of parents who continue to go above and beyond for our family, Rosemary and Gail Robertson and Jan and Joe Zwettler.
Everett doesn’t let me off the hook and keeps both Molly and me in good spirits. Somehow Molly, at eight months pregnant, is still the glue that holds it all together with grace and I can’t imagine doing this without her. We are super excited for the arrival of Everett’s little brother or sister and it’s great to have something fun to look forward to. Through all of this, I remain the luckiest guy in the world. :)