Week 6 – Graduation
|February 14, 2019||Posted by Melinda under Uncategorized|
This week I “graduate” from the proton program. In addition to an official certificate (!? OK….), I also got a little pin with a symbol on it that is relevant to the science of proton particles (which I think is cool). Friday is my last treatment appointment but Tuesday was my final evening social event with the proton group. As is the custom I gave a “graduation speech” that night. Below is a version of that speech, adapted to be a blog post.
Three years ago I was married one year to my high school sweetheart, eight months pregnant, and three months into a new career with a quarter million dollars in debt. And I started to go blind.
In the three years that it took to get a diagnosis I’ve lost all faith in the medical community. When it came time to make a treatment decision I decided I wouldn’t treat. The quality of life consequences of treating were horrific and I decided to take my chances with a slow-growing tumor that hadn’t shown signs of anything but local aggression. I was tired of being misled by medical professionals so intent on treating the tumor they forgot it was attached to a person who might want some say on what the rest of her life was going to look like.
My husband is the reason I’m here at Loma Linda. He’s the one that said “what about proton therapy?” It was dismissed by my local doctors but since this condition affects him as well as me, I said I would go to a consult as long as he did all the leg work. He did, and we know how the story went from there.
Treatment has not been difficult for me. I’m an explorer personality type (more on this in a different blog post) so living away from my “normal life” apart from family is actually not only not a bad thing, but is exactly the sort of thing I need on a regular basis. The more difficult part of this was before having a diagnosis and the upcoming wait-and-see game after treatment. Before, without knowing what was causing the blindness in one eye, we had no way to determine how likely it would be that it would affect the other eye. We also had no way to determine how quickly or if it would progress. Would I suddenly just wake up one day with zero vision? Would I slowly lose all vision in both eyes over the next couple of years? Would my vision remain stable but other autoimmune signs appear? I lived with these uncertainties every single day. When it was cancer, it was a relief. It was obvious to me that option “D” – Nothing at all! – was not on the list of possibilities. I’ve spent three years grieving the loss of a future where option D was a reality. Of all the remaining A through C options, this diagnosis was the least horrifying. But for other people around me, a diagnosis meant they could no longer pretend it was D – something I gave up years ago.
What the future holds is uncertain. We didn’t treat the entire tumor. My pituitary could be more sensitive and sustain damage regardless of the precautions we took. The tumor could suddenly decide to do something drastic. *shrug* It’s a different kind of wait and see game for the rest of my life than I’ve been playing for the last three years, but with some similarities.
The worst burden during treatment fell onto my husband. Single parenting the three year old, working full time, and running the household (we have several complicated things going on beyond the scope of this blog, but suffice to say it was a tremendous amount of stress to try and carry alone). He didn’t have anywhere near the support I did and although my friends and family would have jumped to help in an instant, it isn’t the same as having your own social network. It’s why we made the choice that the cost of me flying home on the weekends was worth it. Me home, supporting him and giving him a break on the weekends was an important part of him staying sane. Caregivers aren’t sometimes recognized for the heroic roles they play next to the patient and in his case, I want to make sure everyone knows what a critical and difficult role he had.
Guess what? I like doing hard things. I like existing on the edge of the human experience and the transformative experiences and stories I find there make any pain associated worth it. Most of the time I actively seek out these experiences. Want to get to know some of the darkest (and best) parts of yourself? Run 100 miles. Do something crazy that feels like jumping off a cliff when you take that plunge. Do something that scares you silly, that you can’t even talk about without making your adrenaline jump. However, I’ve learned that transformative experiences can be found unexpectedly if you have an open mind, and especially if you practice your reframing skills. This proton sabbatical experience will count among one of those unexpected experiences. My advice is to be open to whatever comes along. Whatever you are going through may or may not be a major story in your life, but if you aren’t paying attention you may let something transformative pass you by without notice. Whatever you are going through, build a structure and a purpose in your time spent there. Weave whatever fibers you have been given into that framework and share with the rest of us. Whatever faith I’ve lost in the medical community over the last 3 years, I’ve gained many times more in my fellow humans and our ability to support each other through the bad times.