In a few days, I will be down either 4 or 6 organs, depending on how you look at it. I will be having a Salpingo-Oopherectomy & Hysterectomy. This means I will be having my ovaries, fallopian tubes, uterus and cervix surgically removed from my body by a Gynecological Oncologist.
I will break down the technical side of things before I plunge into my emotional status. My cancer is highly estrogen and progesterone positive, which basically means that the cancer cells feed and grow off of those two hormones. We knew this from Cancer Numero Uno, so I took a drug for 5 years called Tamoxifen that is meant to do its best to eliminate estrogen and progesterone. It clearly didn’t work.
In comes Cancer Numero Dos which, like its predecessor, is highly reactive to hormones. We had to level up and go to a monthly shot in my stomach called Zolodex that shuts down the ovaries completely, and a pill called Letrozole that shuts down the enzyme that creates estrogen in the other parts of the body (yes! estrogen is generated from glands, fat, muscle, etc.).
Since I am 42 and a good decade from being considered finished with menopause, I will need this shot/drug combo monthly for at least 10 years. It is often suggested to women in my ‘condition’ to have the ovaries removed, which will eradicate the need for the monthly shot. It also takes away the risk of the body starting to produce hormones as the shot starts to wear off in the days before the next monthly shot. Either way you slice it, (good one Grace), you have to find a way to keep the hormones at bay. I have chosen the long term solution of having my ovaries and tubes removed.
I do not technically need my uterus and cervix removed, but I have had to have two minor surgeries the past year from my uterus acting up. The Gyn-Onc recommended that I have it removed as well since it is, as she calls it, ‘pesky.’ The detachment of said organs will be done via laproscopic surgery on my abdomen and the removal of, well, everything, will be… you guessed it… via my vagina. You heard me, THROUGH MY VAGINA.
My instructions to the surgeon were simple. Make sure I see neither hide nor hair of a stirrup in that operating room. Be sure I am Propofol level 1000 before daring to place a speculum. And if I have any recollection, even spiritually, of you pulling my reproductive organs out of my body via my vaginal canal, just honestly kill me.
Ok I have collected myself.
We are at a point now where if you are a useless organ and reside in my body, you gots to go. We are a cancer production machine so if you are not needed, to function, it’s times up. I had my appendix removed in 2013 in a thrilling emergency surgery so I am very rapidly running out of vestigial organs.
Major surgery to remove organs under general anesthesia, six weeks of recovery, blah blah blah. I have no fear of that. That is easy. What I do fear is the looming sense of loss for an identity I have had for as long as I can remember. This is where things get murky. Just believe what I tell you I am feeling because it is unlikely you will understand.
As of the second half of the day Monday, I will have no breasts, no real hair to speak of, no female hormones and no female reproductive organs. I will be the medical equivalent of a person transitioning from the female gender, to the male gender.
Now listen up, I am a strong proponent of people being able to be whomever/whatever they choose to be in terms of gender identity. Do you identify as a bagel and cream cheese? Fine by me! It’s just that I choose to identify as my given sex, female. And technically speaking, I’m talking on paper… I will lack most qualifications by end of the day Monday.
I will always be female because that is how I identify, but I feel robbed. Breast cancer is a reproductive cancer and as such, my lady bits are all headed for the incinerator. I know I don’t need them to be a woman, but damn I’d like to not have to make the choice to scrap them due to their propensity to kill me. The added effect of having all excess estrogen and progesterone removed via medication is just insult to literal injury.
My body has become a Noah’s Ark of giving away organs. Two by two. Breasts, ovaries, Fallopian tubes. Dynamic duos that instead of being saved by the flood aboard the Ark, get thrown overboard to perish. See mom, those 9 years of Catholic school weren’t a complete waste, I made a Genesis reference!
Is this dramatic? Maybe. I just feel yucky and sad and dismal. I want to be what and who I was before some deleterious cells decided to fuck it all up. I want my ponytail. I want working nipples. I want estrogen to protect me from bone loss and heart malfunctions. Doesn’t seem like too much to ask?
I went on a girls trip recently with old friends. I had such a fun time, but I felt so- different- from everyone else. It is never a life-crisis contest by any means, but I just don’t relate as easily to people anymore, even to those closest to me. It is impossible to explain and easy for those around me to dismiss and wish away. Problem is, I can’t erase the shifts that have taken place within my body or mind. They exist on their own plane in a place I can’t access in order to eradicate them.
I carry around this enormous, yet invisible bag of trauma. My physical mass becomes smaller, but my bag of invisible trauma grows exponentially. I sense my overt femininity heading out with the garbage organs and what is left is this nebulous sense of being. Neither here nor there. Neither sick nor well. Neither coming or going. Stagnant in my ability to emotionally heal.
I said in the documentary GRACE filmed in 2016/17 after Cancer Uno, “I know I am a woman. I feel like a woman in my heart. But aesthetically, I don’t feel very feminine and that’s really hard.” Wow, good words Grace (eye roll emoji).
I am tempted to laugh at 2016 Grace when I rewatch that. It was all so simple then. I have to remind myself, I am still one of the lucky ones. I am considered curable for now. Living as someone a few organs shy of a full batch ain’t bad vs. the alternative. I can redefine femininity one pair of old sweatpants at a time while I heal and regroup over the next few months.
I think we all need to say a little prayer for my gall bladder as it is the last vestigial man standing. Go on with your bad self gall bladder. You’ve got this.
I’m so sorry! Those words are so meaningless!!! I just know that before all this shittyness started to happen, I always loved seeing you and talking to you when I picked up or dropped off your pups!!!! You are strong, hilarious and really someone I loved talking too!!!
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Sending you a giant hug as you head into this mind f%ck of a surgery. Your words are all so relatable to me. You are seen, heard, and understood. The heavy invisible trauma that becomes unbearable is real. I was so emotional with my salpingo-oophorectomy. It was done at the same hospital where I had my babies. I was a mess walking in to the same place to give up the very organs responsible for bringing my babies into the world. it’s a lot of grief losing our body parts. And I’m in shock on how yours will exit your body!! Damn. You are so strong, Grace, and truly a gifted writer. Good luck and Godspeed from one of your YSC sisters.
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I hear you. And I feel you. And it sucks. But you will get through it, as you (we) do.
If there is any consolation during all of this shit, it’s that your strength and words have gotten many of your readers through similar traumas. There is a bastion of us, and while traumatized, we are pretty strong women (organs aside). Sending love and strength.
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I feel awful that you have to go through this. I know you will conquer this like everything else that was thrown at you but it’s so hard. We all love you very much 🥰
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Grace, what a long, arduous journey you are on. To be so honest and open about your experience is truly the most unselfish act I can imagine. When you heal from this latest chapter I recommend you combine these journal entries into book form. And don’t for a minute think of yourself as less of a woman. Our bodies are containment vessels for our souls. Your soul is fierce and feminine and that will never change. Having said that, I am sad that you are having to deal with this loss . Sending healing thoughts your way and I can’t wait for the book you will write.
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Hi Grace, My heart goes out to you. Your account of the horrors and seemingly relentless onslaught of physical and psychic blows are all too familiar. I found the Zolodex shots to be a strange assault on my womanhood. To kill what was left of my reproductive system to help keep me alive seemed counterintuitive and a particularly cruel ask after bearing and nursing two beautiful children. I am 61 now and when I look in the mirror, I wonder how I would look and feel as this older woman if my womanhood had not been taken from me bit by bit as estrogen and I parted company 7 years ago. But I am alive and have had no new disease that I am aware of. I do wait for it though like a bad ex husband that you are familiar with but never want to see again. I recently have thought of David Allen and have not spoken to him in quite awhile. He had said to me that he didn’t particularly like doing tattoos on people where his work might not be around for too long. I should check in to let him know that his/my tattoo is still alive and kicking. You are a beautiful and brave woman and thanks for your blog and courageous accounts of the shittyness of the art of cancer survivorship. I totally get your sense of humor. Mine is similar, macabre, ironic and yet fiercely hopeful.
Arms around you girl.
Laurie Overton
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Oh Gracie, you will always be that beautiful girl I knew at Boulder who supported Alex when he was sick and the beautiful woman you turned into when I looked you up at Harry Winston’s in NYC. Not sure what to say now except we all need to define life differently as we age. I love you and your amazing spirit and sense of humor. Sending lots of light. lady Di
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