A few weeks ago, my kids must have been playing around in my room because when I came upstairs one of my old wigs was sitting on the bathroom counter. This was the human hair, sorta pricey one that I had all those fits about a year and a half ago that I promptly wore only for work calls. I took a look at it and on a whim, decided to try it on. 

I was genuinely surprised at my reaction. I didn’t recognize the reflection staring back at me in the mirror. I mean, that was the image that I had been looking at for over a year and a half of what normal looked like. Of what I wanted back in my life. And in that moment, starting at the mirror, I didn’t know that person anymore. I then took a picture of me in the wig and me without it and then jokingly put the pictures side by side and sent them to my friends and sister with a “new hair who dis’? tag line. But it sat with me for a while. Obviously. It’s a month later and I am still thinking about it. 

About that same time, I picked up and VERY promptly finished the book “Between Two Kingdoms: A Memoir of a Life Interrupted” by Suleika Jaouad. She is a writer, musician and painter who spent most of her early to mid 20’s dealing with a cancer diagnosis and wrote the books as a result of that experience. To say it hit home is an understatement. To be clear, I wasn’t a young college graduate with my whole adult life ahead of me when I got my diagnosis. Far from it. I was able to experience many of the things she was most concerned about – long term love, a career, children, just … a future that seemed limitless. So to compare our cancer journey’s is not exactly a fair one. Not to mention her type of cancer had a totally different type of therapy that resulted in a very different, and arguably far more intense, medical experience. All that being said, there were so many things I could relate to and the one that struck a cord for me was the premise of the books title – that there is the Kingdom of the Well and the Kingdom of the Sick. And once you leave the Kingdom of the Well, you spend all your time trying to get back. But the fact is that getting back is a balancing act at best – and for most people with a chronic condition you are really always straddling both side. Side note – every person who has had a chronic disease is likely sitting here thinking “ No duh Meghan, tell us something we haven’t been living with for like ever”. Well, health is a privilege. And you don’t really, and I mean REALLY appreciate that until it is taken away from you – in my case with a phone call. But this idea that you never really get to get back fully to the Kingdom of the Well just hit hard. I want to go re-read it like course study style and take a highlighter to my copy. Additional side note – highly recommend reading said book with or without a cancer diagnosis. It’s a bare bones exploration of what we value, how we communicate and process through the toughest times in our life. I also found it an extraordinary insight to the importance of connection, representation, friendship and love. End fan girl endorsement. 

Reading that book and then having this moment in front of my bathroom mirror has really caused me to stop and think about how this whole experience has shaped the go-forward version of me. And I am not talking just the physical – yes, that has fundamentally been altered. For like, the rest of my life. But how I see myself. And I do fully understand, sitting here 2 months out from therapy and surgery that this is all still very new. But already , I find myself wondering – should I be going to the doctor? How do we know we got it all? Is this red mark something to be worried about? Like I spent 18 months wanting to be done with doctors and here I am wondering if I shouldn’t be going to the doctor, messed up right? It’s driven home for me now that I have had cancer, cancer will always be with me. What I have to do is come to peace with how that defines me going forward. It does not singularly define me. Far from it. My therapist and I were talking about that – do I want it to define me… no. But I think that I now have a, obligation is the wrong word, but need to make sure I can do my part to help support, educate and advocate for people who find themselves staring down a diagnosis. It’s one of those profound life experiences that you will always have. The closest thing I can continue to compare it to is grief. It is a heavy, heavy burden to bear initially. Over time, the weight lessens. It’s not that it weighs less – you are just better conditioned to carry it. While cancer will eventually be less and less center stage in my life, it will always be there. I have a girlfriend that was diagnosed with a different type of cancer about 2 weeks after me. Yeah, that was fun. Basically created a built in cancer-buddy – so silver lining? Anyway, the first time she was going through either some insurance or other non-cancer doctor paper work one of the questions was “have you ever been diagnosed with cancer? If so, what type?”. And it hit her, you will always have to check yes to that question. For like – ever. So even in those moments when you are least prepared or thinking about it – it hits. Yes. You have to check yes to that question. Every time. 

I would like to think that over time, again like grief, those moments are less jarring. And intellectually, I can see a future in which that is real. But the emotional part of me, the just two months out from treatment part of me, the still had surgical tape on my incisions until 2 days ago part of me is struggling to see that future and know that I will be ok and not feel like you got punched in the gut all over. That the anxiety of every sniffle, bump, headache or side pain eventually becomes a NOT anxiety inducing moment. I made a comment to someone the other day that you are going along your life, and then blammo – you get a cancer diagnosis and you are immediately dropped 50,000 feet into a shit storm of illness. The drop, it’s immediate. Clawing back out of that drop, takes time. 

Additional, additional side note – if you don’t have a therapist, you should get one. Having a neutral third party to just talk to is amazing, Some days it’s not that deep. Some days it is. Having it – worth the time in the schedule. 

Emotional, self-awareness journey aside……

Recovery continues to go well. Had check-ins with ALL the doctors post-surgery. Surgeon, Plastics, Primary Care. Still need to meet with Oncology and Radiation. When I say I am not seeing my doctors as much – it’s relative. Like I said, health is a privilege. My surgeon told me it would likely be 6ish months before is all fully healed. Inside and out. Still sore in moments. The cords have come back so getting some range of motion issues that I will need PT to clear. But I can’t get approval for PT since we still need my skin to heal. Which is taking longer due to the lingering effects of radiation. Man, cancer is fun. But the persistent tightness and discomfort of the expanders is gone for sure. Next step will be PT as noted and then starting to work on getting my upper body strength back. I am a big ole’ bucket of jello and flappy skin from the waist up. In fairness, I wasn’t rocking like, Michelle Obama arms before my surgery, but I had some definition and could lift things. Now, eh, not so much. Figuring out what I can do and how I build back into some strength will be the next hill to climb. I also still get winded just carrying a larger load of laundry up two flights of stairs. In short, I have work to do. I can say, it’s work I am ready to start taking on. Would be nice to get beat to shit by a workout as opposed to therapy or surgery for a change.

I am sure you have all been waiting WEEKS to get all of this in front of you. I am also trying to figure out where I go from here with my writing. The silver lining of all of this is I have found renewed need to write. A lot of it is therapeutic, it gets shit out of brain and puts it somewhere else. I also enjoy sharing my thoughts and if even one person takes them to heart – good. I am looking at options beyond Caring Bridge to see how I can move forward. Nothing set in stone yet – so stay tuned if you are so inclined. In the mean time – enjoy the promise of spring. I wish Mother Nature would promise to stop with the batshit crazy weather and just start getting warmer. But until then, be good to each other.