No longer October. A look into Survivorship. At least my own view of survivorship.

I am writing this inside the actual month of October.
However, I feel it more appropriate to be after the focus of Breast Cancer Month.
It’s long. It’s heavy, It’s a hard one to write or edit. But it’s a start for me.
To be able to talk more freely of the hard stuff.

I used to love October. My most favorite month. The heat subsides and the colors come into full glorious fall beauty. Sweatshirts and layers are finally acceptable in every way. I couldn’t have loved fall more.

And so, I never thought I’d look at October and think, I am not ready for this month.  Officially diagnosed in October 2017 with Triple Negative Breast Cancer. Receiving my first chemo just over 3 weeks later. Not once did I think I’d want to hide from all the “awareness” of pink and boobies everywhere. 

My diagnosis came on the heels of a whirlwind of appointments, starting in late August. There were so many scans, MRI’s, and a biopsy. Those get you ready for the relentless schedule of lab draws, port placement, infusions and check in appointments. Those are your life now. Rinse and Repeat, week after week. And then suddenly it comes to an end. The fight and busyness are met with uncertainty of “What Now”… did the treatments work, what do we do next?

For me, I had a complete pathological response to the 20 infusions of chemotherapy. I followed my treatments with the bilateral mastectomy. Less than a year later, I would need an explant and a DIEP Flap. {You can read about those in separate windows by clicking on the highlighted texts.}

Albeit, I was considered very fortunate in my regimen. As my cancer is extremely aggressive and high risk for reoccurrence. 

Every cancer patient hopes for the best and is eagerly awaiting the ability to say “I beat it. I am a survivor.” But no one prepares you for what happens when all the appointments and crazy routines are finished. In all of the “education” appointments offered to me, “What does life looks like after the rinse and repeat dance ends?” That wasn’t a class.

“Survivorship“ is something I don’t think any of us have mastered. Which is why I wanted to share this after October; for those who felt forgotten, dropped, lost, or any other myriad of other emotions after the fight to beat cancer was over. Removing my own facade or mask that “I am okay” and sharing, I am really NOT okay.

You Beat {{Breast}} Cancer, You WON, and now WHAT?

As a girl who is a natural born fighter, acclimating to life without the need to still fight, was especially hard for me.  Especially when survivors guilt weighed heavy. I lost a dear friend to the horrible Cancer that comes after you won. She lost her second battle, as I was healing from the second round of surgeries. 

No one talks about how dark and scary you feel after the fight. No one talks about anything on the shadow side, because it’s messy and it’s not the highlights nor is it pretty. It makes others feel uncomfortable. Sadly, that’s when you need the most support. You don’t have the answers inside all of that chemo fog and detoxing of the chemicals meant to save you but killed anything and everything bad or good within you. 

Life no longer seems small. The pettiness that people were fighting over, the arrogance of whether a mask should be worn (or not) to protect others. The idea that anyone immune compromised should be the ones to stay home and hide while others got to just be jerks and live how they darn well please. And that is being nice. Because many of the greatest offenders to this mentality (that I witnessed firsthand) were believers claiming they were losing their rights- seriously??? I lost my whole life inside that cancer battle and you want to complain??

I am not about comparative suffering but I am about people showing up with compassion and love to anyone who is struggling in any way in this life. It’s human kindness and decency!! 

Every offense became “I didn’t beat cancer for this.” and it applied across the board for far too many things and years. Learning to direct those emotions to appropriate places and feelings was something that I scrambled through the hard way.

I know there are support groups and therapists. I likely needed both. I just couldn’t find the trust with strangers. I needed people who knew me to understand what I was going through so deeply but was also so scared to share it. Was I the crazy one?? Was I being too sensitive or too fragile? How was I supposed to navigate all of the feelings and changes? It honestly was so hard. I can literally feel the struggle and pain of it all now in my body as I type it. PTSD is the only thing I can equate it with.

I am different. So incredibly different. I used to LONG to get the old me back. But I am embracing the me that remained and the me that is here now.

You will be different. Inside and outside. Looking in the mirror makes you sad and/or terrified. Touching, smelling, tasting, seeing… it’s all different. Everything is DIFFERENT. Sometimes sadly, that includes the circle of hope and support you once had. They get back to their lives. Maybe they move on to the next feel good needed scenario. Whatever it is, you’re left to navigate the muddy waters of survivorship alone. I believe in the good of others, I do. I just have experienced that some of the people really just want to have you well so they don’t feel so guilty for moving on. 

I spoke before of how we moved just shortly after my final chemo treatments. I got my “survivorship” call from Mayo 2 years after my last treatment. They were a little behind… so navigating it alone- I do mean.

Sharing survivorship, what I feel/felt, and sharing it in the rawness of this month. A month that now brings me such anxiety and angst. Most of the time, I am not even aware until I’m so swept up and consumed in the feelings of terror. Suddenly finding my way to breathe through it.

Every new pain, every new thought of reoccurrence comes even though I have been through not one but two bilateral mastectomies. I found a lump in my left breast this very month. Near my sternum and every dose of chemo I had wasn’t enough to save me from the idea it could be back. What if a cancer cell had been dormant and those migraines are more than the worst migraine ever this time?  Living with a chronic illness that offers new symptoms and pains- I don’t give the multiple sclerosis enough credit because breast cancer lurks like the darkest forest on a haunted evening… 

Will these thoughts or feelings ever go away? For me, yes, it fades in and out. Just like the seasons. I got to see my son get married and that was a HUGE win!! Quirky & Alive!! 

But the intensity of its presence is always there. When someone is newly diagnosed- I somehow am the first person you thought of after not speaking to me since I beat cancer… Oddly, it’s the strangers that I meet and am able to share my story to encourage them through their fight, that seem to give me hope that survivorship is possible.

But inside the confines of an awareness month, I don’t want to be the poster girl for cancer. It’s not my identity. I am not emotionally capable of all the weight that it holds. People want to see the strong fighter and never want to hear about the dark moments. And that’s just anyone’s true story with cancer. And many of you know I am Mrs BumbleBee and finding joy in almost everything… But you see, that’s the managing of the stress from all of it.  My body holding it so deeply which is the exact recipe for cancer.

So, I cannot do it any longer. And I don’t. 

Some of the other things we don’t talk about… relationships and intimate relations.  When I say everything changes. One of the questions that I would always get from women right before their treatments began was “How will this effect the way my husband sees me.” That is so hard to answer. Some are afraid of anyone seeing them sick, bald, post surgery. When you have a partner that intensifies. I am blessed in that aspect but it’s also hurt us in the opposite side. What do I mean? 

If anyone has been around long enough or truly knows us? Pre Cancer we had a very strong and beautiful marriage. We still do, it just looks a lot different. I have always been a motor driven doer. And becoming a “patient” was hard enough. But it was inevitable- my husband became my caretaker. Sitting bedside, tired from taking care of everything. He took over all my chores and all my doings. Even after treatments were done. Even now as I type this. There is still a part of me that resents it when he does certain chores because they make me a “wife” or “alive”. He doesn’t see it any which way I try to cry, scream, or ignore it. It’s Soooo ridiculous, I know.  But, it makes me the “patient” and that’s a mental head game I can’t escape. I don’t need a caregiver anymore. That role seems hard to switch off for him. We are 4 years post chemo and 2 years post surgeries… He’s still stuck in caretaker mode too often. It leaves me feeling like I have no purpose. Even worse, that I am still not doing enough or SICK.

So I get a lot of time to create, read, do art, and wish I was more than the CANCER.

More so, he has absolutely been my rock. He never stopped seeing me as beautiful or a woman.

I on the other hand spent so many of these last years recovering from surgeries, that I had a really hard shadow side to walk through. Unable to go and do as usual. Plus, learning that my needs intimately are met differently, yet still there. Hair growing back and being able to stand tall and feel all the areas of my body again.. you slowly become alive again. I am sure it is different for everyone. I can only imagine the complexity and depths that exist depending on the variables or degrees of everything. 

Give yourself grace upon grace. On my darkest days, that still exist (more often than I thought at this point), I have to remember that it’s all temporary. Shifting my focus. I truly have unlearned some core negative beliefs along this journey. Tapped into a deeper place within me that God has allowed to surface and bubble over. It’s beautiful to see the whole picture from a higher place. And you friend will wonder how did we get here? You’ll cry, scream, and dance in the middle of it all. It’s a rollercoaster of emotions and they are ALL beautiful in their own ways. They all serve a purpose that is waiting to be seen.  Like secret places within yourself showing you the way to better days that exist ahead.

There are many days that I don’t think about the cancer or survivorship. Honestly, more days than not. But it’s something that will always be lurking.

I had every single desire and plan to hit publish on this post for November. But then my regular labs came back {10/25} and I awaited a hematologist e-consult with Mayo and they are at capacity. So I took it into my own hands to go outside of their hands into a doctor that my OBGYN had recommended. I got in with 1 week and I am scheduled for a bone marrow aspiration and biopsy for 12/5 now. 

My results after the bone marrow biopsy came back clear. My neutrophils are chronically lower than the low range. It’s likely that chemotherapy has caused this. I am so grateful for a new oncologist will be monitoring more than the typical labs. He’s been such a gift. 

I truly & deeply, thank you for reading this. I do plan to do an episode on the podcast very soon. Writing it out was much needed and is truly cathartic in its own way. I encourage you to find something that can bring you joy. Meditation has been really calming, yoga has allowed my body to move and stretch. and as always ART has saved my life over and over.  I am always painting. You have something within you even if you don’t believe you are creative. Trust me you were made to create!! 

Have a beautiful day and share a smile with a stranger!! They need it more than you may ever know!! 
Much love!!