The meeting with the Nurse Practitioner on October 4th went well. She gave me a bottle of Palafer, a liquid iron supplement, because they were out of the Feramax samples she can normally give me. She also recommended I find out what my work benefits offer in terms of a walker, which I promptly forgot to do.
Even though I’ve worked hard to keep time for myself, and to ‘take it easy’ like everyone had been encouraging, the day of the surgery was too quickly approaching and I didn’t feel like I had things ready that needed to be, in order for me to return to a comfortable, safe space in which to convalesce. I’d wanted to bring some wood inside from the cord that had been delivered to my new woodshed. I’d wanted to make sure all my comfy clothes were the most accessible, that my cords and chargers were all straightened out. You know, all the messy things you don’t want to have to fight with when you can barely bend over. Unfortunately, with the exception of having to cancel almost everything I’d had planned, including the Town Council Deputation to present Hexagon, a women’s land community, I don’t think I paved the way for myself to recover very well. But I had my friends and family around me, time got booked off work, if without official documentation, and the surgery was happening whether I considered myself prepared or not.
On the 16th, I got a call around noon telling me that my appointment would be for 6am the following day, and to get the hospital in Barrie, about 1.5 hours from my house, for that time. I packed for a day trip and made one frantic and semi-incoherent phone call to my nurse practitioner because the medication she’d given me for anxiety didn’t work when I’d tried it a couple nights prior and I really needed something. She did prescribe something different and Kai picked it up, but I was too nervous to try something new the night before the surgery, so I didn’t bother (talk about getting in your own way…).
We made good time getting to the Royal Victorian Hospital in Barrie by 6am and had to do the usual navigation, registration, telling everyone everything. My pre-op stuff took longer than usual, so the ‘herd’ of the rest of the patients had left by the time I got back. My surgery was scheduled for 8am. I had to wear disposal underwear with a big wonking pad because I was still bleeding from the Provera (progesterone), but they fit quite nicely and for once I was part of the ‘all’ in ‘one-size-fits-all’.
Because the thrombophlebitis in my legs made walking incredibly difficult, I was slow moving to the next room where I’d go through one last round of who I am, what my birthday is, and what my allergies are – which I finally have to answer with something other than a chipper ‘nothing!’, now that I’m confirmed allergic to CT dye. I sit in that open space on a stool with my legs in agony as the blood pools in my lower extremities. I’d turned down three wheelchair offers by now – for some reason.
The nurse brings me into the operating room, and I’m glad to see the bed isn’t just a bare, icy silver table. They make me take off the underwear after all, and I sit up on the bed. My two least favourite things about operating rooms is how everyone touches you and talks to you at once, wanting your attention and focus; and secondly how everyone looks at you from above, where you have no choice to look back, except at any given time, they can leave your line of sight but you can’t leave theirs. That was very much happening in that room, even when Dr. Ball arrived. She is an extremely efficient and smart doctor, informative and patient, although sometimes I feel she moves a little too quickly even for me to comprehend.
They encourage me to lie back and stretch out my arms on the extensions with foam padding on them. It’s not long after that the mask comes over my face and no one counts down or tells me we’re beginning – I’m just gone.
I wake up extremely disoriented in a very large, very busy room. There’s no privacy and I sense that I’m tucked against a wall, but I’m flat on my back and can’t focus my eyes or my mind because of the anaesthesia. Nurses come to check on me but I have no conception of where I am, why, or what it all means. Finally, a young woman gives me her name and explains she’s a nurse. She tells me the procedure went well, just a little long. I finally remember that I’ve had surgery and immediately my abdomen agony makes sense.
“Did I lose an ovary?” I ask simply because of the degree of the pain I’m in. My voice is low and scratchy from the tube that delivers anesthetic. I knew about – and signed off on – the possibility of an ovary being removed, and it was within the ‘not-good-scenario’ realm of outcomes without being a worst-case. The nurse checked my file and read for a moment, then met my eyes, which were still struggling to focus. “Yes.”
I didn’t mean to dismiss her, but I looked away, at the side of the bed with rails on it. Only one ovary left, and a much more serious surgery than I’d anticipated.
With me being barely conscious and certainly not of sound enough mind to sign any contracts or make legal decisions, I was wheeled to the room where I would be spending the next two nights. So much for a day surgery.
I slept off and on but I was still out of it when Kai came in to see me. I remember being so happy to see her, though I couldn’t make my face express that reality. She reported after the fact that Dr. Ball had sought her out after my surgery, which went an hour over its scheduled time of 1.5 hours, and told Kai that, “In the end, Kathleen’s surgery was somewhat successful.” I, of course, knew nothing of this at the time.
Kai reports that post surgery I was pretty loopy and eventually fell asleep after drifting in and out thanks to rapid-tapping that hydromorphone (Dilaudid) button. I remember excruciating pain and fear.
Over the next few days in the hospital, I had a really rough time. When Dr. Ball came to consult with me, she informed me I’d lost .77L of blood, and that when she’d attempted to biopsy my right ovary, it essentially ‘shredded’, causing excessive bleeding which stubbornly resisted cauterization. The unfortunate decision, after many attempts to save it, was made to excise the ovary entirely. All the other biopsies and the cancer cell ‘wash’ went smoothly.
Dr. Ball informed me that she would visit me again before my discharge to see how I was faring and discuss next steps. It is my sincere belief that she did everything in her power to adhere to my wishes to keep my ovary intact, and in fact she showed me photos of my ovaries on her phone, which did not look recognisable as healthy body parts by any stretch of even the most vivid imagination.
Getting out of the bed to use the bathroom was an hour-long ordeal, punctuated by my pained noises as I tried to swallow my hurt so as not to disturb my roommate. Once standing, having to reach through the overloaded IV rack to unplug it was only about the third step, after actually exciting the bed, followed by staggering to the bathroom, trying to open and close the door behind me as my bladder, newly settling into a cavity not previously in existence, screams in a language I haven’t yet learned to speak – pain language.
With lines inserted into both hands, I tangle easily when trying to slip out of the housecoat and lower my hospital-grade disposable underwear. I sit on the toilet seat with an open-mouthed, soundless wail as my bladder empties in the most vengeful way I’ve ever experienced. Finally, everything internal seems to settle again. I can’t pass gas, which become an ongoing joke with a rising edge of fear throughout my time in the hospital. I can barely wipe because I can’t lean forward enough. I’m desperate and exhausted so I press the little button, try to get my housecoat back on, wash my hands while avoiding the most awkwardly placed IV lines, and get back to my bed.
Again, I reach through the IV pole to plug the entire unit back in, lest it beep all night. I sit, with the caution of one with her finger on the nuclear warhead trigger, on the edge of the bed. Inch by inch, I organize myself back into the centre of the bed, and then raise my legs slightly because my thrombophlebitis is agonizing, and lower the bed slightly.
I’m sweating, I’m crying, I’m waiting for the little green light on my Dilaudid button to flash because that means 8 minutes has passed since I hit it last and I can have another moment of relief. It never takes the pain away – there’s no such thing – but it’s enough to make me feel like maybe, with enough time in between, I could do this whole ordeal again.
Back in my bed with Kai by my side, I doze off until I heard the most distinct sound – I woke right up and said, “Nancy!” My friend’s beloved and recognizable footsteps were coming my way! Everyone was duly impressed that I could hear her coming.
We had a wonderful visit, and they went to get dinner together and brought me back some chicken wings. It was fairly late when Nancy left, and Kai stayed the night at the Rotary House, for caregivers of those staying in the hospital. It was $45 a night and just across the parking lot, so extremely convenient.
I didn’t sleep well that night, although at least I didn’t have to try to get up to pee a hundred times like I normally do, since I had a catheter inserted.
That wasn’t to last, however – one of the nurses came by around 8am to pull it out, and that was an interesting experience. It didn’t hurt, but it was so weird. The catheter stays in because there’s a balloon inside the bladder filled with water, so to withdraw it, they empty the balloon and tug the entire thing out through the urethra. It felt super odd, but not painful at least. Unfortunately, from that point on, trying to use the bathroom felt like a crisis. Each pee was agony as my insides rearranged themselves to make up for the lack of ovary, and I couldn’t pass gas or anything else.
The only positive about this situation was short-lived but very welcome. It seemed that the release of pressure from the ovary against my lymph nodes helped the blood flow in my legs returned, so the pain from the thrombophlebitis eased up for an entire day, to the point where I thought maybe it was gone altogether.
People came to take my bloodwork, I met new nurses, and got a different roommate that day. I also got wheeled to a distant area in the hospital to have Dopplers taken of my legs to make sure I didn’t have deep vein thrombosis, which Huntsville Hospital had already confirmed more than two weeks prior. I felt extremely nauseous and had to take a barf bucket with me. I never did throw up, though. I had not taken any pain medication that morning because I wanted to make sure I had my head on straight for the ultrasound in case they told me anything, so my pain level was climbing.
My stepmom Carolyn also visited and brought me lovely flowers, and we had a retro convo, and she got to meet my girlfriend. She could tell I didn’t have a tonne of energy, so she left and I still hadn’t had pain medication – I was sick and shaky from pain by that point.
Which, of course, is when the ‘pain team’ came to talk to me, and this felt less like a discussion and more like a directive to stop using the morphine button. My nurses had told me that the intention was for me to use it whenever my pain was higher than about a four, so that’s what I’d been doing. No one else had acted like using the button was a bad thing, but now this team was making it seem like I was abusing it. I felt ashamed and of course wanted to stop using it so that I could adjust to the pain naturally and then not feel reliant on it when it was time to leave the hospital. So, since I hadn’t used it yet that day, I decided I would just stop altogether.
But my pain climbed and escalated, and when my nurse came to check on me, I was pale and crying and explained my thought process. The nurse told me that if I needed pain relief, it was absurd not to use it, as that’s what it’s there for. And since I’d be there another night, and I was already at a six or seven for pain, it wasn’t a problem to use the button into the next day when it was closer to my time to leave. I was so relieved to get reassured of this that I forgave that nurse for blowing my vein and forcing an ‘expert’ to come and put another line on my wrist near my hand, limiting my mobility even more.
I needed all these lines because I needed three bags for my blood transfusions and one bag for an iron infusion, plus the IV, gravol, and pain meds on the other line.
My friend Nancy returned with my mom from Huntsville, and we all had a lovely visit together – Nancy brought me chaat from the hospital food court, which I loved, as well as some more chicken wings. I couldn’t eat much because my appetite wasn’t very strong, but having company was really nice, despite my pain.
I slept much better that night because I was freer with the Dilaudid button, and even though I torturously attempted to use the bathroom several times, I was able to get some sleep, especially with my noise-cancelling headphones.
One of the first things I learned the next morning, however, was that I had confirmed deep blood clots in my left leg – so, the DVT I’d been told I didn’t have, which had been like the only good news I’d heard on this entire journey! Oh, shit. So the nurse taught me to self-administer Fragmin injections, an intense clot buster with blood thinning properties that I’d have to take every day until further notice.
I saw Dr. Ball again, and we discussed the DVT and whether it was from the pressure of the ovary against the lymph node, the cancer which had not yet been confirmed, or the Provera, the progesterone medication I’d been taking for a couple months. There was no real way to know, so I was to stop the Provera and inject the Fragmin daily. I tried to get some more answers from the doctor, but she slowed me down with ‘one step at a time’ and let me know that she’d see me at our appointment on Hallowe’en, and to call her office if I needed anything.
Nancy returned with my mom once again, once I explained I was being discharged. Slowly, I got detached from all the equipment, and finally I was free of cords and lines, and I could get dressed. My legs felt awful – I couldn’t straighten or bend them very much – and my core was completely weak due to the incision, so my mobility was more limited than it had ever been. My mom wheeled me out of the hospital with Nancy carrying all my belongings, and we got into Nancy’s car, where she’d set up a pillow in the footwell so my legs could be raised.
The drive back to Huntsville was uneventful, but I certainly learned just how involuntary it is to clench one’s abdomen when driving around turns.
Back in Huntsville, Nancy and her husband Jay helped me get my space set up with some stuff from their place, like a chair-like thing with arms and a back to sit in the bed against the wall, which was a huge help when it came to getting in and out of the bed. We sat and chatted while my mom picked up my Fragmin and got us all McDonald’s french fries.
The Fragmin is $1400 for a month’s supply of life-saving medication, since DVT can cause pulmonary embolism. But with my benefits, it cost me a mere $400. I was horrified – so much for my meagre savings that I’d begun to collect since I started full-time at the shelter only a few months before.
I think it’s okay to fast-forward a bit because the next couple days consisted of a lot of crying – like, so much crying – and so many different awkward ways of getting in and out of bed. It was around day five after the surgery that I began to feel better, when I could move around of my own volition. And while my mom and my girlfriend were extremely helpful, I so just wanted my independence back.
I also had to retreat even more from the things I took pride in, like my Doppler articles – I had to request a leave while I tried to sort out my emotional life and balance that with my pain. I also had to pause my volunteer work with Sexual Assault Services because I just couldn’t get around town the way I would need to. Overall, I began to feel like there was nothing left. And my community of people is amazing, but classically everyone says, “Let me know if there’s anything I can do,”, but I still can’t bring myself to reply, “Well, my eavestroughs are clogged and also I’m desperately lonely.” But I’m learning.
On Thursday, October 24th, I went to see my nurse practitioner. She had some of the results from all the biopsies. And would you believe that almost everything came back clear? No cancer in my lymph nodes, the wash came back free of cancer cells. Lots of good news, except that there was indeed cancer in the ovary they had to remove.
But even this is so interesting. To her understanding, the doctor would normally biopsy the external of the ovarian cyst, which means that if the surgery had gone perfectly to plan, they wouldn’t have found the cancer, which was precisely contained within the ovarian cyst without any external evidence. So I’m extremely luck the cyst burst and had to be removed, otherwise I would have had ovarian cancer but no one would have known, which would not have had a good prognosis.
So yes, it’s cancer. That ovary is gone but the one that remains, lefty, is actually the larger and messier of the two, so it’s looking pretty definitive that lefty is up on the chopping block next. The uterus, from the outside, anyway, looks great! But there’s no reason to keep the uterus without the ovaries. And so the next surgery looks as though it may be booked for mid-November, and from there I’ll be going through menopause immediately. Shitty, but hey – that’s cancer for you! Emotionally I’m feeling really messed up. Even though throughout this entire journey, everything looked so suspicious, I still bore such hope that I would be that outlier, that person who against the odds and evidence ended up perfectly fine.
I am not perfectly fine. I am in extreme pain from 1. the deep vein thrombosis; 2. stopping the Provera means the killer cramping in my uterus is back; 3. the incision itself, which unfortunately is hinting at infection; and 4. I’m heartbroken that I have to deal with this when I felt like there was so much in my life that I was doing ‘right’. If I’d been a rude or cruel person, if I’d been on the ‘wrong path’, if I’d been ignoring all the signs pointing me toward the life I’d been meant to lead, then maybe I’d accept this ‘eye-opener’ and make changes. But instead, I feel like cancer completely sideswiped me off the trail that I was meant to be on, that I was doing good work on, that I was finding myself on…
Regardless of the ‘why’ of all this, it’s happening and if nothing else it’s a VERY interesting experience. I’m thinking about mortality, motherhood (since I’m infertile suddenly), and meaning. I’m learning so much about the medical world, and I’m learning about myself. I’m okay with all this. There’s no guarantees in life, there’s no roadmap, and there’s nothing and no one that ever said, ‘if you are good in the following ways, you will be rewarded’.
Cancer isn’t punishment, and I don’t need to constantly be positive or change my attitude to suit others. I need to be real, and I need to be loved even when I’m sad or upset. Especially when.
You are remarkable, Kathleen May.
Phew! Betcha glad that’s over!!! … it’s over, right? … no ‘just-in-case’es’? … hope you’re well on your way to healing.