I feel like we often get consumed by words or catch phrases in our society and everyone uses them in abundance to describe a multitude of things. I was sitting in my office this morning and I have this really pretty sign that just says "grace". It was all but jumping off the shelf at me for a little attention. For whatever reason, I bought it a few years ago while on this cancer journey because it meant something to me in that moment. I"m not really sure what, but it felt like a word that could maybe sum up this rollercoaster experience I've been on. Ironically, I've never really given it much thought since that day, until today. Maybe I bought it because this messy, beautiful yet ugly, frightening, humbling, imperfect yet authentic path I've been on needed one word to sum all of it up. I'm certainly not the poster child for how to handle tough situations. I am, however, proud of how I'm navigating all of these struggles. I also know that there might be someone out there stronger, braver and even more resilient making it look like less than the hot mess I feel that I am on most days. With that said, I also know it doesn't matter that this said person exists. The only thing that matters is how I manage to clear each hurdle and how I keep moving forward, even if it's with tiny, baby steps. According to Google (haha), Grace is defined in actually many different ways. 1) Simple Elegance-ok, sadly that definitely doesn't sum up what my life has been or felt like. 2) Courteous goodwill-I mean, maybe I could give some examples, but this doesn't seem right either. 3) a pleasing appearance or effect-now this seems completely ridiculous and strikes a nerve...the harsh reality of cancer survivorship is that it's not the pretty pink ribbon that is so often on display. Despite the many beautiful moments and "gifts" if we can call them that, it is gut wrenching, soul crushing and a constant challenge of reframing your mind so that your circumstances don't completely consume you. Nothing pleasing really about that. These definitions actually go on and on, but rather than bombard you with them, I'd like to reframe this, too and share what I think "grace" means to me. Here goes....
Grace was sitting my kids down to tell them that I have cancer again. It is being strong for them when all I want to do is hide under the covers. Grace is knowing that their ability to process this now at 14-11-7 is different than when they were 9-6-3. I probably didn't do it right. I know it's going to take time for these new wounds to heal, but I also know that the love I have for them is a force much greater than cancer. Fuck you, cancer....Grace.
For me, grace was also day one of my latest round of radiation where I found myself back on that radiation table. I took solace in the fact that I was reunited with a team of professionals that I could trust and that I call my friends. We talked about our kids, we had some laughs and we decided our next reunion would be at a restaurant with cocktails! haha. Physically, radiation this time around wasn't so bad. It was a quick couple of weeks, there was no burning of my skin this time, no burning of my esophagus (yes that happened) and all things considered it went smoothly. Emotionally, it was a little tricky. We were radiating the lower part of my spine, so I had to lay on the table with my pelvis exposed. I had my undies on, but I felt so...well, mortified. That sounds weird coming from the gal who has to take her top off at almost every other appointment, but something about being vulnerable in a different way felt scary, embarrassing and shameful. I can't really explain why I felt that way, other than it was me processing yet another traumatic experience. The kind people around me helped me get through it, but cancer equals trauma. It just does. Thankfully, I knew what tools I needed to get through this. Time with my therapist, weekly Reiki with Cathy and a really good cry the entire solo 90 minutes home on that first day, all helped keep me somewhat sane. On the last day of radiation I was face to face with that damn bell again. I spent hours overthinking what to do about it. Here's the thing...for me and for many others, ringing the bell doesn't feel good. Am I done with some sort of treatment? Yes. Will I need to come back and do it again? Not sure about that. Did it work? No idea. The idea of ringing it loudly and proudly felt gross and I'm not talking about just this time. I've had two other times where I was faced with the bell. One for the end of chemo and the other after radiation to my chest. I did it then because I felt programmed to. After years of advocacy work, I've realized and learned that not everybody even has the opportunity to ring the bell! No "this is it" moment to celebrate. I know some live to ring that thing, but for me it felt insensitive, premature and not at all good. At some point I hope I can help redefine what celebrating the end of various treatments can look like and change it to be ceremonious and also meaningful, but for now, I simply chose to acknowledge the bell, take a picture of it, have a good cry on the way home with my friend who drove me to treatment and simply move forward. Grace.
Grace is constantly being at odds with yourself and doing everything you can to keep yourself from suffering from things that haven't happened yet. I've had my mortality thrown in my face so many times! These brushes with death keep coming at me and I'm constantly challenged to look at things for what they are. Is there something trying to take me down? Yes. Do I still have a chance at beating this? Also yes. Is it time to fold and give up? Hell no. I've heard I've had cancer now twice. I was in organ failure once and I've had so many serious infections that I've lost count. With each of these experiences, I have to remind myself that I'm still living, not necessarily dying. Not yet anyway. The work it takes to put yourself in a healthy mindset is exhausting...but it's also lifesaving. Even as I type this today, I'm struggling through another infection that started in my left breast 36 hours ago. Out of nowhere came a fever, chills, a swollen breast and so much pain. I'm scared. I don't have the best history with these infections, but I"m trying to remain as calm as I can and follow the antibiotic regimen prescribed to me. I"m hopeful that this can just be a bump in the road and maybe a side effect of the oral chemo, which we put on hold for awhile to help me get through this. I have to trust that I'm strong enough to get through yet another barrier and it's just one of those things can happen given all of the chemicals that have recently been put in my body. No jumping to conclusions, no bracing for the worst. Just refocus and reframe my thoughts... Grace.
Grace is knowing that each moment is just that, a moment. I'm willing to soak it all in knowing that I will never get the same moment back again. This sounds sad, I guess, but it also sounds exciting. How beautiful to not get caught up in chasing the next moment or reliving the last one, but rather totally embracing the beauty, ugliness, challenge or whatever you're feeling in the experience you are in NOW. Nothing is promised for me or any of us. If we all lived moment to moment, we might embrace one another a little longer, laugh a little louder, show up for one another without the need for reward and just not be bothered by the small stuff. I've had to realize with the help of my oncologist that I'm running the same race as most of you, but I have a different path that I have to take to get to the finish line. It makes the race more challenging for sure, but so far my race isn't cut short. I just need to focus on what I can do each day to get me there. The loneliness, twists, turns, roadblocks...they can haunt you or they can thrust you forward to the road less traveled. Some pretty amazing views can be found there. If I truly focus on the here and now, I'm positive that I will authentically live the life that I"m fighting so hard for with more beauty, gratitude, love and empathy, but only if I"m willing to see it as such ...Grace.
For any of you feeling alone on your dark path, searching to find what grace means to you or if you're just along for this ride here with me (thank you by the way), I'm leaving you with words from Jamie Varon and a super meaningful song by Gavin DeGraw. It's easy to feel alone on these crazy journeys were are all on, but if you keep your eyes, ears and heart open, you might find that in this moment, you have everything and everyone you need to help you navigate your journey. You have the most important person of all...you. You hold the magic and grace it takes to overcome that which is set before you. Only you can determine what you need and what you don't to get through this life with whatever kind of grace you need. Remember...Your wings, my wings, our wings. Keep on Killin' It-M
Soldier by Gavin DeGraw
"Be in the day you're in. In the season you're in. In the feeling you're in. We try so hard to escape the past, move to the future, to try to plan it all out, to brace ourselves for uncertainty. We try to perfect the future in order to avoid the present. It'll get better later. One day, I'll be happy. One day, when I get it all right and perfect and check off the list, I'll finally have space for my joy. But what about the day you're in? The moment you have right now? Where have you gone? Dn't you want to be here, too? What if you're missing the lesson, the signs, the magic of right here? Nothing in the future gives you permission to bask in joy. Nothing slows down until you slow it down. If you can't be in today, what makes you think you'll be fully present in tomorrow? Be in the day you're in. What is happening for you here? Where are you being led? What is your heart saying? Don't prolong it. Be in this day. Let that be enough. Your joy is here. Your life is here. The future is always coming but you never get this moment-this exact one-ever again. Don't miss being alive. Live your days while you have them."-Jamie Varon @moonomens