Scars, Seen and Unseen
I see my physical scars before others do.
The ones from my childhood, faded, but still present from when I played too hard or wasn’t looking. My C-section scars are hidden from just about everyone but I always make a point to show my boys on their birthdays just how they exited my body on those important days. We’ve made a point, to be honest, and transparent from the beginning about bodies, about body parts and about my terminal cancer diagnosis.
My metastatic breast cancer scars
Then, the cancer scars:
- The breast surgery that left a divot in my left breast and scars under both breasts and under each nipple where they literally rearranged and rebuilt my breasts;
- The scars where they took the 4 sentinel lymph nodes from my left side;
- The extensive scarring on both legs where they cut me open, drilled down each femur and jammed titanium rods inside, then the scars where the screws were affixed to hold the rods and my bones in place which adds up to 5 scars on each leg;
- The small scar and bump where my port resides in my chest, which can be mistaken for a freckle unless someone is looking closely, albeit a large one; and
- The three small scars on my abdomen where robot arms were inserted to assist my surgeon with removing my ovaries, uterus, fallopian tubes, and cervix.
These are the scars that can be seen on the outside of my body, affects to my body that shows up on my skin. The unseen scars are not readily visible, yet are often much more difficult to deal with.
The physical toll of advanced breast cancer that is harder to see
Let’s first start with scarring to soft tissue. No, no one cannot see how my tendons swell, how the ligaments are stretched because of surgeries or medication or changes to my gait because of pain, how inflammation affects every cell, how my muscles and organs are affected by the lack of estrogen. How the walls of my vagina are like a desert. How the inside of my mouth erupts into painful sores at certain times in my medication cycle and are exacerbated because of the lack of lubrication. These are often touted as side effects, but these are scars to tissues that are not accustomed to such issues and tissues that heal far slower. Pain is also evidence of the effects on soft tissue and that’s something that I have in spades. I’m 40, yet I often feel 90.
In addition to the pain I live with because of the scarring to my tissues, I also live with scarring in my brain. Yes, I know that’s not the technical term for chemo brain. When I was first tested, the neuropsychological tests demonstrated that I’d lost 20 IQ points. 20 freaking IQ points make a lot of difference. Now I’ve been able to gain a lot of them back by religiously using the app called Brain HQ, but I’m not mentally or cognitively anywhere near where I was before breast cancer invaded our lives.
The emotional toll of advanced breast cancer
Another area of unseen scarring is the emotional scars that come with a terminal diagnosis. Also known as coping with what I’ve often called the sword of Damocles hanging above my head. The depression and anxiety I live with each day will most likely be with me for the rest of my life, so the fact that it’s still called situational is an often debated subject between my mental health providers and I. The level of depression and anxiety is pretty constant, even chronic, but I occasionally have flare-ups when a scan is coming up (aka scanxiety) or when an important date is coming up (eg, a holiday or a cancerversary) or when a friend is murdered by cancer or suffers a progression. I’m not ashamed of the fact that I struggle with these ongoing monumental change to my life, not at all. I see a psychiatrist regularly and I take medication that helps me deal and also helps with the hot flashes that came with the sudden immersion into surgical menopause. I’m still learning how to cope and deal with the fact that I’m sad, a lot; that I often feel paralyzed; that sometimes getting out of bed is a task so gargantuan that it doesn’t seem worth the effort.
Trying to find me again after my metastatic breast cancer diagnosis
Another type of scarring that is probably linked to all of the scarrings above is the scars to my sense of self. This one is hard to articulate in a clear way because it is so subjective. A sense of self is linked to so many internal thought patterns, many of them instinctive and fragile and many linked irrevocably to culture and upbringing. My sense of self is somewhere, it’s just not as accessible to me right now.
Before my stage IV metastatic breast diagnosis, I had my own business and I was responsible both for managing that business, my employees, and generating new work. I networked constantly and I was busy all the time. At home, we had two children and I was tandem breastfeeding. We volunteered our time, we were members of a church, we gave donations, I served on boards, we spent time with family and we traveled. Yes, we were probably too busy and didn’t take the time to smell the roses as much as we should have. We were productive, we were helping people and life had rich meaning.
Then, I heard those fateful words “you have breast cancer” and, a mere 3 months later, “you’ve actually been metastatic from the beginning.” That was 2017.
Making the necessary changes
In response to my diagnosis, we made the changes to our lives that we felt were necessary. I closed my law practice, we accessed my disability benefits, we rented our house out and we moved to be with my family. Overnight, I had a completely different life. Overnight, I went from active to struggling to walk. Overnight, I went from a working mother to a stay at home mom. Overnight, I didn’t have billable hours and clients and responsibilities, except to my family.
Overnight, I no longer knew what to call myself.
The diagnosis of stage IV breast cancer is life-changing
The diagnosis of Stage IV metastatic breast cancer, a terminal diagnosis, has upended all of the things I thought I knew about myself, my life, my family, the God I have trusted my whole life, and life itself. This radical change has caused me to re-examine who I am, fundamentally, as a person. Like the physical and emotional scars, I will carry all of these changes with me wherever I go, whatever I do now. Like it or not, having cancer has irrevocably changed the very fabric of everything.
There are bright spots. Life is not always grim and I am slowly learning the boundaries of who I am now. I still say yes too often. Yes to traveling. Yes for volunteering. Yes to helping people. Yes to using my energy too much. And I pay for it differently. These new scars, they are hard to get used to. Hard to live with. Hard to understand.
Recognize the importance of self-care
Self-care was never something that meant that much to me, frankly. Now, I am reminded, often violently, by my body that I must prioritize caring for myself. There is no longer a choice in that. I have to adjust my expectations of myself, to be kind to myself.
But there is still magic and life goes on and I am still here, a person still figuring out how to do this life.
Some questions to think about...
- Do you have scars that can or can’t be seen?
- If so, how do you deal with them?
- Do you need help in understanding how to deal with your scars?
- Do you know anyone who has scars, seen or unseen? If so, how do you relate to that person?
- Do you need help in understanding how to relate to other’s scars?
Caregivers: Do you practice self-care?