At the beginning of this week, I felt like Superwoman. #Notdeadyet as one of my Breastie friends coined. Cancer keeps trying to bring me down. It keeps trying to fuck with me, but I’m still standing (thank you Elton John).
Some days, however, I feel scared, vulnerable, nervous, anxious, insecure, shaky, a sense of despair. My Neuro Oncologist made it clear what I had is a pediatric cancer. I’m 41 yrs old. After surgery she said, “I cannot say if this will or will not come back.”. There is no absolute answer. It’s the #1 reason why Survivorship is so hard (at least for me). If we only knew for sure that absolute answer, but we never will. We can screen and diligently follow up with each Dr appt, each prescription, test, trial, new development, but we’ll never know for sure. And then, BOOM, out of left field, lightening can strike again.
Not even 48 hours after my last (33rd) brain radiation, I’m eager to feel “fine”. I’m eager to move on with my life and push forward. If only Survivorship were that simple. Over these last few weeks, there’s been many ups and downs. Physically I am luckily feeling stronger each day. I still have seizure activity and headaches, (and a mango sized bald spot on the side of my head), but emotionally, it’s a mixed bag. Some days, I feel on top of the world, that I can conquer anything like Superwoman. I survived cancer not once, but twice! I feel empowered to embrace all that is life; the immense gratitude, the smell of Spring in the air, my beautiful 5 yr old son, the unwavering support of my husband, my loving & loyal dog Lenny. 🐶 ❤️
But those dark days peek through regularly, like the BRCA cloud that’s followed me since 25. Rearing its ugly head, waving at me from the corner of my room with a snarky sly face, “I’m still here!”. This is the balance we walk post-cancer, post-treatment, post-surgery; waiting for the next Dr appt, the next screening, the next “See you in 3 mths, 6 mths.”… Praying, manifesting, envisioning that, that shoe will never drop again, but logically know for so many others, it does indeed do just that – drop. And the shoe that dropped for me was out of nowhere.
It’s common for cancer survivors to fear the beast that is stage 4, treatable, yet incurable. Like with BRCA, this dark cloud hovers too close for comfort. The timing should be in your control, yet it’s totally out of your control. If cancer does present itself and that rain cloud bursts open, soaking your every fiber so that you cannot attempt to catch your breath and see through its darkness, you’ve become immersed in its driving force – again. I am permanently tied to this storm. It ebbs and flows, and moves in & out, but it never fully goes away.
With metastasis, there is logical connection between what was and what is. It’s not fair. It’s unrelenting and drives you to the edge of a cliff. But what if it’s not metastasis. What if it’s an extremely rare, once in a lifetime lightening strikes twice in the same spot type of situation and your battle with cancer the second time around has absolutely nothing to do with the first. No logical reasoning behind the two – zero connection. Lightening can actually strike twice in the same location, as rare as that is. It happened to me.
During my last visit with the Radiation Oncologist, I told him I’m nervous and asked how many adults has he treated with a supratentorial (frontal lobe) rela-fusion positive ependymoma. His answer was no one else (let alone anyone who also had breast cancer and is BRCA1+).
I don’t expect myself to come to terms with all of this in a few short weeks post-treatment. I understand it’s a process. I understand it takes time to heal (emotionally, physiologically, spiritually). It inevitably all brings me back to what got me through treatment in the first place, one day at a time. No one knows what tomorrow will bring. You cannot change what happened yesterday and you certainly cannot control what is yet to come. I’m still learning that harboring guilt, resentment, anger, frustration and grief, does not serve purpose in the long term. It is absolutely normal and common for cancer patients and survivors to feel all of these emotions, but what I’m finding more helpful is holding onto hope, strength, support, love and beauty. I’m trying to keep everything that’s occurred in perspective, that what will come will come. But now in this moment, this day, this hour, I am ok! I am still standing. #notdeadyet !! Repeat this to myself – repeat this to yourself, I am ok! In this moment, this hour, this day, the sun shining. It’s Spring. I am still standing.
✌🏻 💜
Breaking BRCA+ 