As I get older I feel like I am becoming an anniversary collector. Yesterday was my son’s 21st birthday. Tomorrow is the 2 year cancer-free anniversary after my stage four cancer. These are the days that information comes or actual events occur that knock my trajectory in a different direction. I have collected a few more of those this year. The day my daughter and I moved into our beautiful apartment. The start day of my new job in tech that I love.
Thursday I met with a surgeon and I received exciting news that I am a great candidate to get what will hopefully be the final surgery/procedure/big event of my journey with cancer. The last anniversary collected for this chapter in The Book of My Life.
Side note: When I think about all the stories I have to tell and I think about what the title of that book would be, ideas pop into my head like “One Hot Mess, But She Rocked It“, “Resident AF”, “Shits & Giggles”, “Badass Warrior Goddess in Overalls”, “This Is All A Human Construct”, “From Doormat to Magic Carpet”, “Why The F*@# Is She Still Smiling?”….. my personal favorite is “Shits & Giggles”.
After my last surgery on January 10th, 2020, my abdominals did not heal correctly. There is a 2-3 inch gap where my six pack (If I had one) would meet in the midline of my belly. Through the cancer screening CT scans I receive every 6 months, they show that the separation has gotten worse and torn higher up over the past two years.
There has been a fine line between exercising to bring my abdominals back together and it making it worse. Exercise programs and trainers have not been able to bring them back together but rather the latter has been happening. I suspected this to be the case as I can feel the stretching of my tissues daily if I do not bind my midsection. I am literally held together by a broad swath of elastic and velcro. Can you say Sexy? Um, no.
This condition also leaves me vulnerable to hernias, or as I learned yesterday just the general thinning of the fascia holding my insides in. Daily, I can feel my intestines digesting and moving matter through my belly from the inside and by laying my hand on my belly from the outside. I did always say that I missed the sensation of my babies moving in my belly when I was pregnant, which is what it feels like, but I was not saying I wanted to reenact it, Universe. I think you misunderstood my message, I just wanted you to listen, not take action so I can relive feeling my insides in this way.
I wear my binder and usually a compression tank top daily. It is not comfortable but I have gotten used to it. I wear the binder to bed as well. Sometimes in a sleeping fit I apparently take it off without knowing. Even my subconscious is like “f*$# this thing!”. These contraptions make it harder to get deep breaths at times and strangely cause swelling in my extremities. If I don’t wear them though I feel like I am tearing apart at my midsection. If I am on my feet without my binder my lower back starts screaming at me after not too long. When I cough or sneeze I need to hold my abs together with my hands, as the sharp movement of my belly distending in such actions brings the visual of the alien bursting out of the belly of that guy in the Alien movie (I don’t recommend googling that scene, I just did and it’s much more graphic than my memory). Knock on wood, I have not had any episodes of vomiting yet but I am hoping to not have that experience as that sounds like a straight up nightmare for my poor abs. I might just have a blow out if that happens. Now that brings a visual of a blown tire to mind. Whew! To say the least I am super excited to have the news that I can move past this. I have plans to be hiking many miles in my 70’s and doing who knows what else. I need my core to be strong.
The glitch in this plan is that the surgery I need is not covered by insurance. Any insurance. I have good insurance through my job. Nope. It’s considered cosmetic. I have inquired with folks in the hospital and out if they think there is a chance for me to petition to have it covered. The resounding reply has been you can try, but they will say no.
I have read articles about my condition and the surgery and in the same article it will state that this condition can cause back pain, constipation, poor posture then state that there are no side effects to this condition to warrant surgery. I find that fascinating. I have lived before with severe back pain after I gave birth to my kids and worked my way out of it. I have tried that path here and it made it worse.
I am functioning now with this condition, yes. As I age and I settle more into my post-menopausal self, back pain and posture issues are not acceptable. After menopause, of which I am now after my full hysterectomy two years ago, the integrity of the pelvic floor (which is part of the core) changes. It takes effort in the best conditions to stay on top of core health for longevity. I am looking at the long game here because I am here for the long haul of life.
When I met this surgeon shortly after my surgery in 2020 thinking I had a hernia when this first started getting worse, she was distant and standoffish. When I saw her this week she was warm and friendly, almost excited to see me. She congratulated me on my good health with an air of surprise that I was still on the grass side of this earth. It was nice to be met with direct eye contact and the ‘leaning in’ warmth, as I was prepared for a face-off to talk about the reconstruction surgery. It was one of those moments that left me with the feeling/reminder of – ‘they didn’t expect me to live this long’. It has undertones of feeling like a side show at a circus where folks look at me like I am blessed by the devil or a gift from God, herself.
To think of it, I never inquired about the long term outcome of the two other cancer cases like mine that were documented anywhere. Yep, two. Only two other documented cases of what my body did with the second tumor. For real I feel pretty special. I am in the top three of unique tumors in my division. Can I get a plaque for that? Or maybe a trophy? I am shooting for first place in thriving longevity after all of this.
I have continued on with my Chinese medicine route for health. I am still on the strange diet of which I now appreciate and love. I fell off the wagon a bit in the past few months but as life settles in to my new normal I am back on track (with a bowl of millet, wood ear mushrooms, onions, corn in a homemade roasted tomato sauce as my breakfast with a steamy pot of green tea at my side as I type). The plan is three more years as five years clean is the golden goal. I am hoping as the years pass the fear of recurrence will subside. I am in a bit of a flare up of fear right now but I sit to breathe in and breathe out knowing I have this moment and that is a gift. My cancer will not come back. I am working my ass off to make sure that is how it will go.
It will all work out. I will be okay. I have a beautiful apartment on the river. I have a job that I love, that I am good at with absolutely wonderful people. It turns out my years of doula work have given me skills and talent that is transferable across sectors. My kids are doing great. Ella played ice hockey for the first time her senior year! Sam is 21 now and doing life in his own apartment, and excited to go back to Wayne State to finish school in the fall. We have had some lovely trips together this fall. My anxiety and stress have gone down. We are doing well.
My plan moving forward: One more surgery. Focused heavily on self care and healing for at least 3 months realizing it will be a full year before it is fully healed. Stay with Chinese medicine management of my health along with my 3 month check-ups at the hospital. Then a big party January 10th, 2025 celebrating 5 years cancer-free. And to kick ass like a sea bass the entire journey.
With this reconstructive surgery not covered by insurance I am at a bit of a crossroad. There are many paths I could take. I am a single income household now. I have been paying out of pocket for my weekly/bi-weekly visits to my chinese doctor. I was able to pivot quickly this year financially with a significant life change but it does change my landscape. I have been doing life and doing it well but I may be at a point that I want to ask for help.
Asking for help is something I encourage in others as I love to be helpful when I can. When it comes to me asking for help, it is a test of my ‘I can do it myself’ or ‘what will it cost me to ask for help’ mindset. A number of years ago I read a great book called The Art of Asking by Amanda Palmer (who is Neil Gaiman’s wife for those of you who may know him). Here is a link to her TED talk about The Art Of Asking. Honestly I recommend listening to the book on audible, she reads it herself and includes her music along with music from her musician friends like Ben Folds. I actually listened to her book twice back to back on a solo road trip. She talks about her life as an artist and her struggle with asking or receiving from others. When I struggle with my ego to ask, I remember the essence of asking to invite the community in. When done mindfully, it says be part of my journey.
I have been emotionally and mentally vulnerable in my writing. Asking you all to come on this journey with me. It helps me to write, and to know someone is along for the ride out there somewhere. I may be asking for help in the near future with this surgery. I don’t know what immediate recovery will be like. I will not be driving for 6 weeks to 3 months. Luckily my daughter drives, my mom and son can be available. I have the ability to work remotely but I really love our office culture and know it is good to be there a few days a week. I know I will not have to work too hard to find someone to walk Doctor, our dog. He is well loved by many. I may also ask for financial help to get on the other side of this.
Next steps are calling the doctors that were referred and making the first appointments. I am excited. I am nervous that they will look at me and my chart and for some reason say I am not a good candidate but that is my inner gremlin of negativity and fear driving the boat. I am looking forward to feeling whole again. Not held together by elastic and velcro. Tears and a happy dance in anticipation for the road ahead.
I am a very blessed and lucky human. Let’s go kick ass like a sea bass!