Preparing for the Unknown

Welcome back to the next Thriving Not Just Surviving blog post. Following the seizures on September 2 and 3 I spent the next 10 days in St. Louis following up with multiple doctors from my medical team.

We met with my neurologist, and unfortunately, we still don’t have any answers. Since February when the seizures started I’ve undergone four brain MRIs, nearly 200 hours of EEG monitoring, 2 lumbar punctures, numerous rounds of blood work, and we have yet to receive a positive or abnormal result on any of these tests. Despite the negative findings, the seizures continue to happen with increasing severity and frequency. It’s looking more and more likely that I have a very hard to manage form of epilepsy that doesn’t respond well to medication and only presents in very sporadic occurrences. We are going to continue working with my neurologist in an attempt to find a medication regimen that works and we’re also looking into some diet and holistic changes to incorporate into my lifestyle.

On Thursday I underwent my routine (every 3 months) CT scan for the lung cancer. You might remember that the last scan showed several enlarged lymph nodes which could be indicative of the cancer returning. This latest test showed that most of the enlarged lymph nodes shrunk to their normal size while different lymph nodes grew in size. My oncologist said that this does not appear to be cancerous activity. This appears to be an immune response to an infection. My body has taken quite a beating over the past year and its likely worn down and struggling to fight infections. While this is not ideal, its infinitely better than the cancer returning. It just means I have to make a concerted effort to rest and remain in good health.

My injured shoulder is going to be the next major decision that we will have to act on. It continues to sustain damage after each seizure. While it continues to heal remarkably well each time, it can only take a limited amount of hits. I underwent a CT scan to give my surgeon a better look at the current state of the cartilage, bone, and joint. The scan actually looked better than we were expecting and showed that my shoulder is healing fairly well. The major concern is that the shoulder never completely heals after each injury and the bone and cartilage are breaking down slowly over time. The amount of irreparable damage done since the seizures started in February 2018 shows that I have only a few injuries left before we will need to perform some type of surgery to rebuild and re-enforce my shoulder.  In most cases this could be a fairly routine decision and procedure to complete. However, the seizures continue to occur and could potentially undo any surgery. I’ll spare you the details of the different procedures that we could try or modify for my situation, but its going to be the focus over the next few weeks. My oncologist wants me to get a second opinion and is referring us to one of the top shoulder specialists in the country. Hopefully within the next month we’ll have a better idea of what the realistic options for surgery are. In the meantime, I’ll continue to rehab the current injury as best as possible.

Its pretty obvious to see that its been a rough past few months. I’m not the type of person that is going to lie or gloss over the facts to preserve positivity. The honest truth is that I remain positive despite the recent setbacks and continue to have full confidence in my hand-picked medical team. However, Maureen and I will be faced with some big decisions in the coming months and have to plan our future with the possibility of never being seizure free and the potential of the cancer eventually returning. I’m ready for this and Maureen and I do have a vision of a great life despite these long-term issues.