My life has been feeling very heavy lately. I feel that, perhaps, it is the heaviness that comes with settling into life as a cancer patient. I am really “in it” now. I am halfway through my chemotherapy. I feel like I should be excited by that. Sometimes I am. For example, the thought of my hair growing back is utterly thrilling. I cannot wait for my follicles to come back to life. Halfway through chemo means halfway to hair growing back, hooray! I am also just exceedingly tired of chemo. I am tired of feeling of tired. I am tired of feeling sick. I am tired of not feeling my finger tips anymore (peripheral neuropathy). I am tired of the hot flashes (early onset menopause). I am tired of the chest pains (pericarditis and/or heart burn). I am tired of scraping my way back to health each week only to be injected with more poison. So being halfway through chemo means that I am halfway done with dealing with that, thank goodness.
And yet, I find that I am mostly not so excited to be halfway through chemo. I think this is, in part, because these past 10 weeks have seemed quite long and thinking about dealing with another 10 is just tiring. I think it’s also because the second half of chemo brings new drugs and these new drugs (Adriamycin and Cytoxan or AC for short) promise to be much harder to endure than Taxol has been. (As one woman put it, being on Taxol was like having a cold and being on AC was like having the flu.) And finally, I think it is mostly because when chemo is over all I have to look forward to is the thing that I am most dreading: the surgery.
Surgery is still months away and yet it is all I can think about. I have always known that there would be a great deal to process in terms of the surgery so I am thankful for the time I have had to process it. Many women find themselves on the operating table just weeks after getting a diagnosis. And yet, doing chemo first and having 20+ weeks to think this through is a lot. My brain very quickly hijacked my better judgement and I began dreaming about surgery long before I was willing to think about it. These days I vacillate between looking up, memorizing and proselytizing about all the statistics I can find to support what I think is my best option, to mourning what I feel will be one of the most significant loses of my life.
In short, I want a double mastectomy. If you research double mastectomy and young women one of the first things you will learn is that young women are coming out in droves for double mastectomies. Everyone from the New York Times to the academic journals are talking about it as it is happening increasingly alarming rates. It’s a conundrum because getting a double mastectomy doesn’t improve their chances of survival and young women seem to understand that and still want them anyways, so what gives?! the authors write exasperated. Well, I have done my research. I understand the statistics. I know that I have somewhere between a 3 and 10% chance of getting breast cancer in the other breast in the first 5-10 years (different research has found different rates). I also understand that my risk is on the higher end of that because I am young and because my breast cancer is invasive and aggressive and triple negative. For me that risk is enough. I also know that in my case, studies have shown that a double mastectomy does indeed improve chances of survival by about 5 percent in the first 5 years.* For me, that improvement is enough, especially when considering the fact that I don’t want to live just 5 more years I want to live at least 50, and those years, along with my improved chance of survival, add up. So that is what I have been thinking.
What I have been feeling, however, is a different story. The profound sense of loss and grief that come with this kind of decision is almost unspeakable. I am asking someone to cut off the very center of my body, the core of my being. People talk about breast cancer like all it needs is a cosmetic fix. So often the cheerful refrain in conversations about mastectomies and reconstruction is “at least they’ll always be perky!” But the more important thing to remember is that “they” don’t really exist ever again. The form might be there but the function is forever lost. Most women, for example, can’t feel their breasts anymore after a mastectomy. More importantly though, to me at least, is that I will never know what it is like to breastfeed my children. I have had multiple nightmares in which I give birth and then immediately start sobbing and apologizing, knowing I can’t provide this new life with the first thing it requires of me. I know that not every woman feels strongly about having this experience but I have for as long as I could remember. My mother was a mid-wife when I was little and I have long valued natural childbirth and breastfeeding as fundamental experiences I wanted to have as a woman. The grief about losing this is vast and I am not certain it will ever completely go away. I am, however, working to console myself with some half-hearted truths like: many women are unknowingly unable to breastfeed and at least I can prepare myself for it, and between milk banks and baby formula my baby will be perfectly healthy, and at least I can still (hopefully) get pregnant and have that experience which so many women cannot, and ultimately what I cannot give my children in breastfeeding I can hopefully make up for in a mother with a fierce passion for life and a deep gratitude for her time on this earth.
Beyond the loss of that very specific function I am also just afraid of the surgery itself. I sort of hate the word mastectomy because I feel like it whitewashes what should really be called an amputation. It’s traumatic. It’s painful. It’s a violent removal of the middle. And then there’s the reconstruction. People seem to feel more relaxed when you say you’ll be getting reconstruction like it means that what is lost will be easily recovered. But the fact is that a mastectomy is a traumatic and extremely painful surgery to begin with. Reconstruction adds many more painful months of expanders and more surgeries and a seemingly infinite amount of space for complications. (I recommend this article for a good understanding of the risks of reconstruction). It is a far, far cry from the breast augmentation procedures with which we are all much more familiar. And yet I feel like I am about to embark on a journey that will often be compared with that. In the end the names really say it all. An augmentation makes something better. A reconstruction attempts to rebuild, to replace…my appearance, my sense of self, everyone else’s ideas about what makes me a woman? That’s really all it will do and so I don’t blame women who choose not to go through with it. It’s a lot of pain to go through in the name of keeping up appearances. Despite that I know it is what I want. And I feel fairly confident that I will someday be able to recognize my body again but it does not mean that it is not an incredible loss that will take a long time to grieve. I hope that you, my friends and family and strangers, can respect my decisions and accept my grief. I wish I could tell you this would all be a breeze but nothing with cancer ever is.
And while I would prefer not to carry such a heavy burden it has served to remind me that as heavy as my life has become I am resilient. I am buoyant. Sometimes I sink but I do not drown. When I feel ok I easily and readily want to engage with all the beautiful and wonderful pieces of my life. I am an extrovert so when I have the energy to go out I am recharged by the people around me. I continue to make plans, scheme schemes and paint pictures of a well-lived life with, around and beyond cancer. In particular I am trying to practice a new thing called self-love. I am carrying myself more gently these days. I am allowing for the failures and missteps. I am more fearlessly protecting myself and asking for what I need. I am less self-conscious and prouder. I think this kind of self-love, which we could all practice more of, will become fundamental to my survival as I push through the difficult months ahead. Despite the unbelievable outpouring of love and support I have received, cancer can still be a very lonely place and pain is the loneliest of them all. I know I will need all the love I have to get through this. Right now that love means sharing my heavy burden with all of you, taking some of the load off my back and continuing to allow myself to grieve the losses that are to come.
*This study published in 2010 concludes that there a 5% improvement in the 5 year survival rate for those getting double mastectomies if they are between the ages of 18 and 49 and have hormone negative breast cancer (i.e. they are not eligible for adjunct Tamoxifen treatment).