Content warning: contains graphic images of sutures, epidural, and removed uterus and ovary
When you have to make a list of the pro/cons of having surgery and the pros/cons of not having surgery, and both lists have ‘death’ on them, it’s easy to feel like you don’t have any good options available to you.
But after seriously contemplating the lists, it became evident that the choice to not have the hysterectomy/oophorectomy and try to battle ovarian cancer naturally wasn’t making the most of the best part of this experience: the fact that we’d caught this early. If I waited, the cancer could spread and I may have had to have the surgery anyway, plus a bunch more.
Once I’d decided that I would go ahead with the surgery, I felt better – lighter. The deciding was the hardest part. Even the fear diminished, though it did not disappear.
Recovering from the emergency oophorectomy in October was nightmarish. I was so afraid of having to go through that again. The darkness, the weight of the diagnosis, the pain.
So I faced the second surgery, the more invasive and complicated hysterectomy and left salpingo-oophorectomy (as righty got evicted in October 2019) and omentectomy (removal of the uterus and cervix, left fallopian tube and left ovary, as well as some fat and some lymph nodes) with fear. Not worse fear than dying of cancer, but fear nonetheless. And yet… the experience was as positive as such a surgery could be. I was and remain in shock at how much better it was this time.
Some reasons why:
The biggest? I did relentless internal, emotional work to accept that I have cancer – that it wasn’t my fault – that I deserve good quality of life – that I will be okay. I had to get good with every possible outcome because I didn’t want to live in regret. I finally got there.
I had accepted the impact of the surgery (no bio kids, surgical menopause, no more menstruation or ovulation, impacts of loss of estrogen).
I had already been through a shitty recovery, so I thought I knew what to expect and was pleasantly surprised instead.
Because I’d had a surgery, I could prepare myself and my space to better accommodate my recovery.
It wasn’t an emergency surgery, so my body and my brain were prepared for what was going to happen, and my body didn’t have the trauma of the blood loss and emergency intervention.
I didn’t have to have blood transfusions, which I think was really hard on my body last time.
I had an epidural, which was amazing for keeping the area numb and letting me feel more mobile.
The epidural kept the on-demand painkiller localized to my spine, so no brain fog or sleepiness.
The epidural also allowed me to pass gas, which for whatever terrible reason I literally cannot do normally, and the gas/constipation is a really brutal part of recovery.
I had immediate pain relief because the mass was causing pressure and adhering to my sidewall, so once removed, the pain eased.
Lastly, the surgery itself went very smoothly with no complications. Obviously a big reason.
So, I had a lot going for me this time. The hospital was great and all of the nurses were amazing. I have a nurse practitioner there now, so I have someone I can connect with when I don’t have access to the doctor. I was able to move around the first night of the surgery, and slept well afterward. My family, chosen and blood, took care of me, and I knew I had a community rooting for me.
Kai drives me to RVH, the hospital in Barrie, around 5am on January 28th. We get there around 6:20am and I change into the hospital gown and robe. We sit in the waiting room and Kai asks me if I’ve said ‘goodbye’ to my parts. I had, but I take that moment to hold my belly and tell my uterus and remaining ovary that this isn’t their fault, and that I am grateful.
I have to talk to several nurses before the surgery. One takes my blood, weighs me, and another talks to me about the epidural and pain relief options. One more takes swabs to check for superbugs. She tells me that she’d read some of my chart and that she’s heartbroken for me. She informs me that she’d prayed for me, and I say thank you. I used to not like it when people, especially strangers, prayed for me – I don’t believe in god that way and it can feel pushy. But a lot of the time, the women I know who believe in god seem to believe many of the same things I do, just by other names and avenues. It isn’t faith that is the problem, I figure; it’s religion.
However, before I leave this nurse’s office, she glances at the clock and then asks me if she can pray for me. I say yes because what she does on her own time isn’t really my business and she’d already prayed without my permission so what does it matter to me?
But the other reason I acquiesce is a little bit of playing the odds. I’d been pretty convinced going in to surgery that I was going to die on the table. I’d had some things happen that I took as signs. I went so far as to write a note for my loved ones, which includes the passwords to my computer and phone to make things easier if I die.
So I think, if I tell this woman she can’t pray for me, and then I die on the table and meet capital-g God and God says it’s because I didn’t accept the prayer, I’d feel so stupid. How embarrassing!
I say yes, but instead of letting me leave so she can pray alone, she puts her fingertips on my knees and bows her head, fully praying aloud. I’m shocked but I let it happen, and leave in silence when she finishes.
I return to the waiting room and eventually it’s time to go into the blocking area, the space before surgery. I kiss Kai goodbye, again fairly accepting that I would never see her again. I rest in her warm, loving space, so grateful that she arrived in my life when I didn’t need her, so she can be here now that I do.
Here, I get my epidural. I’d been nervous about this because, well, that’s my spine. I wait as nurses come and go around me, and then I meet the anesthetist who is going to insert the epidural. He’s young, a resident, and he stands too close and has iffy breath. Behind me, he pushes and prods the knobs of my spine to the point of pain, and then there’s the pinch of the hollow needle, through which the epidural line gets pushed, then the needle will be removed. He asks me where I feel the numbing, and I say it’s centre-right. There’s some fiddling, but my sense of the location doesn’t change. The senior anesthetist tells him, “Good job,” so that’s reassuring. I hate having lines coming off me, I find it panic-inducing, and the epidural is worst because, again, spine. They tell me I can move around and lay back on it, just treat my back like it has a bad sunburn and don’t like thrash all over the sheets.
In the operating room, I see my doctor and we talk a little. Someone puts a mask over me – I hear metal instruments clinking outside my line of sight. It isn’t long at all before I disappear.
When I am brought back, my first thought is that I didn’t die after all, and I’m confused and elated by that. My second is that I can communicate so much better than last time. I feel a deep, violent ache in my pelvis, around the top of my vagina, as best as I can tell. I think, “There’s no way I can get through the day with this pain.” They increase my painkiller and give me the handy little drug button. I push it immediately and meditate through the pain. They all remark at how lucid I am. Finally, a good grade!
I’m taken to my room to find out Kai has done some fancy footwork – she finagled me a window bed! I’m so grateful and the view is lovely. Once the pain in my vagina area passes, which is within a few hours, I feel good. The epidural is just a miracle. I’m up and ambulating twice that night. Kai brings all the nurses coffee because she’s amazing, and I notice they are very nice to me indeed! Well, except one nurse who got fed up with my tape, kept adding more and more, and eventually just wrapped me right up and told me to stop moving…
I sleep fairly well for a bit, but I get a roommate at 3am, an emergency surgery patient and she’s in pain. I have my noise-cancelling headphones but rest is difficult after that.
Dr. Ball visits me the next day. I feel like she was a little nervous because last time went so poorly, and I was a mess. Now, I’m bright and cheerful, feeling less pain already than before the surgery. She looks at my notebook, open to a blank page, and asks if I have any questions. Nope! I’m good. She lets me know she’ll be back the following day.
I get lots of moving around done. I can almost stand up straight. It was an open surgery, a laparotomy – I have an incision from within my navel to the top of my pubic area. I count 30 staples but the nurse practitioner eventually takes out 32, so I guess I miss a couple.
The most annoying thing, however, is the ice test. Every four hours a nurse comes by with a baggie of ice, and I have to lift up my gown while she plops the ice on my skin from nipples to knees, and I get to rate how cold it feels on a scale from “I literally can’t feel that” to “Why are you so cruel?”
Because I’m well hydrated therefore no IV, and because I don’t need a painkiller drip or a blood/iron infusion, I don’t need to have any tubes connected to my arms. They keep the disconnected IV line in my arm, though, and I still have the epidural in my back, but having my arms available is a joy and it feels so much better. FREEDOM!
Nancy and Jay come for a visit and bring me snacks and wet wipes because I’m covered in iodine and pink stuff. They are amazed to find me sitting cross-legged on the bed, smiling and laughing (not too hard, though – I got warned about hernias). After a lovely visit, they make their exit when the nurse bearing the bag of ice comes dripping my way.
The pain team nurse comes back to talk about taking me off the epidural the next day. It feels soon and I’m very afraid that the pain will be too much – I’m afraid it will be like last time. But I rest well enough that night, despite people coming and going at all hours.
The next morning, I meet the Nurse Practitioner who will be working with me. We have a great talk and she says I will almost certainly be doing chemo. I do cry at that point, because I so just want this chapter to end. But we move on to talk about what her role is. She says she essentially fills in the gaps – I say, I thought that was what the nurse navigators do. But I don’t mind – the more people on my team, the better. I also tell her about the nurse that prayed for me, and we discuss that. She says she will let the head nurse know, and validates that it was not appropriate.
The head nurse comes in to chat and I share the story again, letting her know the name of the nurse. I emphasize that I don’t want to have any kind of formal proceedings to take place, but I do want the nurse to be told that that is just not appropriate in a setting that is strategically secular. I think about two different young women who’d been in the waiting room with me, one of whom brought her gender-non-conforming girlfriend, like I did. Would they be any better able to decline unwanted prayer than I was?
I read much of the day, a book called Your Medical Mind, about why we make the medical decisions we do. It helps me understand that I prefer a minimalist approach with a preference for advanced technology. Very worth reading if you feel like you have to defend your medical decisions to loved ones or professionals.
Kai comes and goes. She’s an amazing support, bringing me snacks and treats and just being with me and keeping me distracted. I think we’re both surprised I’m as well as I am. I know I keep waiting for things to get worse.
It’s another night of interruptions, but the next morning we talk again about getting me off the epidural. I’m told it’s at a 4 and they want to take it to a 2. I cry because I’m that scared, and ask if we can go to a 3 first. The nurse is like, Of course! And I feel way better. She lowers it and I wait for the pain to rear up, but it doesn’t. Eventually we go to a 2, and I feel fine.
The ice tests keep coming, and when I do use the painkiller button, it freaks me out because I can now feel the epidural space and therefore can feel the liquid entering my spine. It doesn’t hurt but it feels really gross. I do mention it to the anesthetist when he checks in on me, and he says that he hasn’t heard that before but it does make sense – it’s a little liquid going into a very tight space. I stop using the button because I find it so icky.
Dr. Ball comes back and tells me that no, we don’t know for sure if I’ll need chemo, and we have to wait for pathology to come back to decide the course of action. She is not one to speculate. By now, I’ve collected some questions and she answers them well, as she always does. I ask her about risk of prolapse, and she tells me that I’m in a good position to avoid that because of my age and not having had kids. I ask her what ligaments they used to restructure my bladder and she laughs and says that’s a whole anatomy lesson. But she explains what she can. I ask how deep my vagina is now, and she says it’s about the same – removing the cervix doesn’t take away much depth at all, and because it’s elastic, I likely won’t notice a difference. She took a picture of my uterus and ovarian mass once they were removed, like I asked her to, and they are equal in size – which isn’t right at all, obviously. Ovaries should be about almond-sized.
Over the course of the day, the epidural is taken down to zero and I’m allowed hydromorphone for pain, but it’s a lower dose than I’d been taking pre-surgery so it didn’t have much effect. In the afternoon, the nurse takes the epidural out – it’s not as bad as I thought it would be. No pain at all.
I’m without any painkillers except acetaminophen and ibuprofen and I feel… okay. Not amazing, but not doubled over. I know I keep repeating myself, but it was Not Like Last Time. The nurse tells me it’s great that I’m able to read, and there’s almost a litany from them about how ideal my recovery is! One nurse even told me I was her favourite kind of patient. A+ in recovery!
I don’t sleep all that well, and I felt like I had to beg for the hydromorphone I was allowed every 4 hours but only took twice. But that was from a nursing student, so I didn’t get too grumpy. But they let me sleep in and I didn’t wake up until 9am, which if you’ve ever slept in a hospital, you know is unheard of. I didn’t even hear my breakfast come in! Thank goodness for the noise cancelling headphones.
It’s the Nurse Practitioner who wakes me up. We have a talk and she goes over medication with me. I let her know I have a ride in the early afternoon, and she says I’m basically discharged.
I take my time getting my many belongings together and trading my hospital gown and robe for leggings and a sweater. Last time, I couldn’t even put on my own pants. This time, I even get my boots on! And when Nancy and Jay arrive, I WALK to the car. Not a wheelchair. I could dance, if my belly would let me.
The drive home is uneventful, but when we pull into my driveway, Kai is there waiting. The first thing I see when I exit the car is my own face, taking up the majority of the front page of the Huntsville Forester. Kai had gone out to pick up copies of the newspaper with my interview about the hidden costs of cancer.
I’m grateful that the story is being told, but I feel immediately exhausted. I retreat into my space and curl up in bed.