By Maggy Athanasious Fernow
So, it’s my cancerversary.
This date has caused me to reflect on my experience over the last 14 months. I don’t normally share like this, but I feel a compulsion to get the words out. It makes me nervous and uncomfortable, but here goes. And, yeah, I realize this is self-indulgent so if you’re reading, thank you for indulging me!
Different people measure their cancerversary from different milestones – the date of diagnosis, the date they began treatment, the day they ended treatment, surgery dates, the date they were declared “No Evidence of Disease” or “NED” in the breast cancer world (for me, that was after my double mastectomy). “Remission” isn’t really a thing with breast cancer. No doctor can ever tell you your cancer hasn’t spread; it could just be too microscopic to detect, only to rear its ugly head years later when you’ve gone back to your “normal” life (whatever that means post-cancer).
I’ve chosen to measure my cancerversary from the date I started chemo. September 29, 2017. When I think of my experience, that is the date emblazoned in my mind. It’s when my cancer became real and tangible to me. I was not one of those people who sailed through chemo beautifully. No. I was very sick. There was misery and there was pain. My first three cycles, I vomited basically non-stop for 10 days after my 8-hours of drug infusions, until by trial and error we found a combination of drugs to help stem my rampant side effects.
TCHP. That was my regimen, both a blessing and a curse. An aggressive protocol for an aggressive type of cancer (HER2+/ER+). It seems fitting that I had my last Herceptin infusion this last Friday, almost a year to the day I started chemo, coming full circle and another reason marking my cancerversary with this date feels right. I’m lucky because my miracle drug, Herceptin, which was made available only in the last 20 years, has transformed one of the deadliest forms of breast cancer into one of the most treatable. I’m very lucky.
Lucky. It’s a strange thing to think of yourself as lucky under these circumstances. That is one of the crazy things about cancer. There is guilt in being treatable, in being a survivor. There are many women who have it far far worse than I did/do, many who will not survive. I’ve learned that survivor’s guilt is real. I’ve been called “strong,” “stoic,” “inspiring,” “amazing,” a “warrior.” I truly appreciate the words of support from friends, colleagues, acquaintances and even strangers, but I don’t feel like any of those things. I didn’t have a choice in the matter. I don’t feel like I’m “being” anything or acting any particular way. I’m just taking the next breath as I must and each next step as it comes.
Though my world feels like it has ceased turning for a full year, I’m cognizant no one else’s has. What a lot of people may not realize is that having cancer is busy. There is a lot of juggling that goes on. I have a young child, a full time job, a husband, a household to maintain, and have attempted to maintain some semblance of familial relationships and a social life. In the space of a year, I’ve easily had over 100 appointments—6 chemo cycles, 17 cycles of Herceptin, 1 biopsy, 3 surgeries, 2 hospital stays, 5 echocardiograms, 1 MRI, 1 CT scan, countless ultrasounds and blood draws, and about 30 prescriptions that constantly need refilling/tracking —while trying to work through most of it. I regularly see my oncologist, breast surgeon, plastic surgeon, ophthalmologist, physical therapist and cardiologist. I’ll be adding to the mix an allergist and endocrinologist. Add on top of that keeping track of the medical bills and fighting with insurance, which is stressful and exhausting in itself.
Chemo doesn’t just end, there is fallout. The Herceptin has damaged my heart (hence, the cardiologist), I’ve had vision changes and an unexplained blind spot in one of my eyes (hence, the ophthalmologist), I get hives almost nightly (hence, the allergist) and I have the bone density of an elderly woman (hence, the endocrinologist). I lost my hair, eyelashes and eyebrows. My fingernails peeled off of their nail beds. With every chemo cycle, I lost my sense of taste, leaving in its place an ever-present metallic, disgusting sensation tainting everything I ingested. My blood cell counts are off, which can go on for years, making me susceptible to illness. And then there is the effect on your memory. Chemo brain is real. It’s a strange feeling to forget something that you know with absolute certainty that you know. It’s like a memory hovering just below the surface that you can graze with your fingertips, but you can’t quite grab ahold of. Like an itch you can’t scratch because it’s just out of reach.
Though I may be done with my active treatments, you are never really done with breast cancer. There is the practical side — I need one, possibly two, more surgeries. There is the “maintenance” — monthly injections and daily medications for at least the next five years. I won’t even get into the side effects of those drugs, but there are many. There will be countless more doctor’s appointments, echocardiograms, labs, prescriptions. Sometimes when I walk by a mirror, I’m jarred and do a double take because I literally think there is a stranger in the room with me, but then I realize it’s only me, albeit a different me. It’s surreal, like a dream sequence.
The scars are not just physical. There are emotional and mental scars too. Some days, I feel a scream rising inside of me, beginning in the pit of my stomach, and I feel like if I were to let it out, I would never stop screaming. Of course, I don’t. People think it all ends when treatment ends, but it doesn’t and it won’t. There is a dark cloud, always. I asked my oncologist how I would know if my cancer has recurred. She said that I should pay attention any time something feels “off.” Imagine that. Every errant pain, irregular blood draw or strange feeling will send me down the rabbit hole of dark thoughts and, truly, terror. Cancer that has metastasized is a whole other ball game and, if I have a recurrence, chances are my chances will not be good.
When I think back on it, I shed very few tears over my cancer diagnosis. I did not cry when I learned I had cancer, but I did cry, and I cried hard, when I learned cancer would rob me of the ability to grow my family how and when I wanted. I have hope that Matthew will have a baby sister or baby brother, but realistically I don’t know if that will ever be. Maybe we will adopt or consider surrogacy, or maybe I will be blessed with an unlikely pregnancy (in which case I would have to accept that increased risk of a recurrence is a consequence of that pregnancy), but those are all long roads paved with uncertainty and a long way off in any case.
Cancer is like that. It takes and it takes. But I’ve also learned that it has given to me in unexpected ways as well. Cancer is destructive, but it has transformed me. I’m fundamentally a different person, hopefully a better one. It is degrading and dehumanizing, but also has put me in touch with my humanity and mortality in a more intense way than ever before. It is disorienting, but also enlightening and illuminating. It has given me a new perspective on life, as well as my relationships. Yes, there have been those that disappointed me, but I choose to dwell on the support and kindness that has come my way from unexpected places—including from long-ago friends, acquaintances, colleagues and complete strangers.
There are not enough words in the English language to capture what it is like to have cancer, though I seem to have come up with quite a few. Cancer is just cancer. It is absolutely true that no one can understand unless they have walked in these shoes. People think you are “fine,” but you are not fine. People don’t know what to say, and I totally get that. The expectation is that you will just go on like nothing has happened to you. You are expected to be positive and ultimately grateful that you did not die—and of course I am! I thank God every single day. But, it is isolating and it is lonely to live life like you are unrippled, placid water on the outside, but in reality there is a storm raging inside of you.
My love and unending gratitude go out to those who have walked this journey along side me and been there for me and my family, whether it be with visits, phone calls/emails/texts/messages, kind words, flowers, cards or by lending a hand with child care, work obligations, hot meals or gift cards. I know who you all are and hold you in my heart. I’m thankful for my top notch, amazing and caring team of doctors, nurses and therapists. And, of course I especially thank my parents, my husband Jay and my shining light, my reason for fighting, Matthew. Over the past year, I have not been able to be his mommy the way I wanted. There were many bed-ridden days, days where I could not get up off the bathroom floor and months where I was medically restricted from even picking him up. There is deep, perhaps my greatest, guilt and regret in that. The above picture captures one of our happier moments and I can only hope and pray that he will not remember the dark ones.
Did you celebrate your cancerversary? We would love to hear your thoughts on Maggy’s post as well as your own experience. Join our private Facebook group and join the conversation!