The weeks after my hysterectomy surge and ebb between activity and debilitation. Less than a week after the surgery is the gala for Enliven, our local cancer support organization. Kai and I go and stake out a couple seats, and people come and go around us.
Then there’s the Huntsville Theatre Company’s presentation of my one-act play, Wouldn’t Miss It, which opened for the stunning play Perfect Pie. My sister came up, along with my mom, Nancy, my friends Beth and Kate, and of course Kai was there! And even more friends were at the theatre. A thrilling, but exhausting day.
My staples come out and my incision is healing great. The recovery is tough enough, but I keep expecting it to get really bad – like last time – and it never does. I do have a burning subdermal pain to the left of my navel, and there’s a numb spot on my left thigh that seems connected to the odd restless strain that I’ve felt in that thigh since the first surgery. But I adapt.
Kai has a speaking engagement along with Nancy and some other friends in Gravenhurst, and she delivers her talk on The Joy of Quitting, both poignant and incredibly prescient, for myself and for the world. And also – super funny! I’m so proud of her! Nancy speaks there as well, and I find myself missing working together with her to deliver our workshops for women, but I can’t even manage sitting in the theatre seat for the event, so I have to let that feeling go.
The next day, Valentine’s Day, Kai and I go to Toronto to see a play called Fish and Rum and stay in an airbnb. The play turns out to be a 3-hour work in progress, and by the time we make it back to the space, I’m feeling absolutely wretched, mostly in my leg and left abdomen.
The next, I’m hesitating over going to emerg. My experiences with emerg are not great, and I don’t want to waste hours getting nowhere. We visit Allan Gardens, hoping this will help with the mental aspect of the pain – it’s winter and I usually struggle, and I’ve been more immobile than I have in a long time.
Afterward, we drive to Bluffer’s Park in Scarborough so I can go for a walk and see if it helps with the pain in my leg. Kai calls me out for delaying the inevitable, but I need to try.
As lovely as the walk is, it offers no physical relief.
We end up going to the ER in Barrie on our way home to Huntsville. At this point, I’m really suffering. We wait about four hours before finally getting shown to a room, and then another hour or so before we see a doctor.
Because I have cancer associated thrombosis (blood clots), they order a Doppler ultrasound, but that won’t be available until the next morning. And because of the surgery, they order a CT scan on my abdomen because they can’t identify the mystery pain.
Kai went and got us subs to eat because it was already 9pm, and I’m literally opening the wrapper, the smell of my toasted sub wafting up to my nose, when the nurse comes in and tells me I’m going to get a CT scan hopefully within the hour. I almost start eating but, remembering my previous CT instructions, I ask the nurse, with palpable regret, if I’m allowed to eat.
No. I am not.
I sit with the sub in my hands for almost five minutes, telling Kai I’m just going to have one bite. But I refrain, somehow.
A real heartbreaker moment, that one.
I’d learned from my very first CT scan that I have an allergy to the contrast dye, so they start me on a benadryl drip as part of their protocol – which makes me feel nauseous and dizzy. We’ve been evicted from the emergency room, and now we’re in the place called the Fishbowl – a large room with comfy reclining chairs and large doorways and ‘windows’ without glass where we patients can be observed by the nurses and doctors coming and going.
It’s after midnight when the CT techs are ready for me. They, like everyone else, ask me about the allergy. Then one of the techs mentions that this hospital uses a different type of dye than the Orillia hospital where I had the reaction, so I may not be allergic to this one.
And praise the universe, I have no reaction whatsoever to this dye! Which means when I need further CT scans, I’ll just request to have them done at the Barrie hospital, so I don’t have to take the prednisone and benadryl prior to the scan. Silver lining to a problem that hadn’t existed before the storm began.
The scan is over quickly, and then it’s back to the Fishbowl. I’m still told not to eat in case any further imaging is needed. The ER doc eventually returns after reviewing the CT results – she says there is a not insignificant amount of fluid in my abdomen and lower pelvis area. She said it appears to be a bleed, though they couldn’t discern if it’s ongoing or had already stabilized.
It’s after 3am when a room opens up in the Minor unit, and a nurse wheels a big reclining chair into the room for Kai, and I crawl into the bed.
I finally get to eat my sub.
In the morning, they do the Doppler ultrasound. There’s quite a bit of waiting around, and Kai goes to get us some smoothies. Eventually, I’m told by another ER doc to go off my blood thinner injections in case the bleed is ongoing. He prescribed me a fancy ibuprofen (which I can only take when not taking blood thinners). He also said the Doppler showed no blood clots in the leg, which is what I was most concerned about. So, some good answers and some more questions.
The ER doc emphasizes how important it is that I get in contact with my oncology team first thing in the morning. I do so, and when they eventually return my call, no one seems concerned, and no one tells me why not.
On February 26th, about ten days after my trip to emerg, I meet with Doctor Ball for my post-op.
This has been the most anticipated appointment of this entire journey. This is the one that tells me if the hysterectomy was the right thing to do. It’s the one that will reveal what the next few months of my life will look like. And to some degree, what the rest of my life will entail.
However, even with all that anticipation, I couldn’t have predicted what the doctor would tell me.
Because there was cancer found in the ovary I had removed in October, it was diagnosed as ovarian cancer. We’ve been going with that assertion. The biopsy done on my uterus at the time found only atypical, or precancerous, cells. I was told that 30% of the time when they find pre-cancer somewhere, there is also cancer, they just didn’t happen to biopsy that particular area. But Dr. Ball had also said in October that my uterus looked healthy from the outside. So we were pretty confident that it was ovarian cancer, and because of that, I knew I wouldn’t have to do radiation therapy because they don’t do that on ovarian cancer. I’d taken it off my radar.
However, they found cancer in my uterus and my other ovary. And because it doesn’t really travel from ovary to ovary, in conjunction with other evidence, the doctor believes it’s uterine cancer. And because it’s spread, it’s stage 3a. We are currently working on the assumption that it is one cancer, not two primary cancers (uterine and ovarian), but cells are with a specialist to get a solid answer to this.
Remember how I keep going on about how we caught it early? Early, and it’s already at stage 3.
The lymph nodes came back clear, though one suspicious one remains – though the others have looked suspect as well and came back clear. Later, I go to the health records room and get them to printout all my notes, and I read that I have a concerning 3cmx2cm ‘something’ that appears attached to the wonky lymph node. The doctor didn’t mention this during the post-op, and also did not know what is going on with the pain in my left leg, but I suspect they are connected.
So now that it’s uterine cancer, the protocol is radiation and chemotherapy. 25 rounds of radiation, five days a week for five weeks, in Barrie. New studies show that radiation therapy is potentiated by two doses of Cisplatin, a chemotherapy drug, administered intravenously in two rounds – one at the beginning of radiation treatment and one in the last week. According to research, this chemo drug is well tolerated. Doc says if I do this, my prognosis is Excellent. There is no research on my prognosis if I don’t do the protocol – basically because it wouldn’t be ethical to study that.
Now, the other two chemo drugs they’ll be giving me at the end of that regime are not so well-tolerated. They don’t like to give me a lot of information – three different people told me, ‘we’ll address that when we get to it’ but my brain doesn’t work like that. I need all available information, statistics, and some anecdotes to make an informed decision. So the doctor did tell me about the drugs so I can research them. I’ll get sick, lose my hair, have my immune system destroyed, all that good stuff. But that’s later.
I also have a referral to a genetic counsellor, because I might have some fancy inherited gene, because uterine cancer in my age bracket with no risk factors is really rare. Or could be BRCA. Or not. The doctor told me they presented my case at their round table – again! I certainly don’t do anything by halves.
I’ve been without an income for a month now because my short-term disability ended and my claim for LTD is taking forever, but I’m hoping it’s approved soon because things are a little dire. Thank goodness for my support system, my friends and family who are helping with money, and people who have donated or helped out by shovelling or cooking or driving me around.
Next up, on March 2nd, is my appointment with the hematologist. She tells me I need to go back on the blood thinners, but no more injection – I can take a pill now. I never thought I’d be so excited to take a blood thinner!
The following day, I’m sitting at the Rotary House Lodge right next to Royal Victoria Hospital in Barrie. In fact, I can take a tunnel underground to go to my next appointment, with the radiation specialist in the cancer centre. Don’t even need to go outside!
Like the rest of my team, the radiation doctor is a young woman. She’s brilliant and answers my page of questions. She estimates my chance of the cancer recurring if I don’t do the recommended treatment is approximately 35%, which she admits is an extrapolation from other studies she’s read. Chance of recurrence if I do the treatment? 10%. Chance of getting an entirely new cancer as a result of the radiation? 1%.
My bladder will be impacted – basically burned, scar tissue will form and it will not be as elastic. She explains it’s painless for the first couple weeks, and then the fatigue, nausea, etc can kick in. She also says there will be a month in between radiation and the intense chemo, which allows me to go on the family vacation we’d had planned for ages – my first vacation with both my mom and sister, and Kai is coming as well. Thank goodness for things to look forward to.
The nurse asks if I can fit in the necessary CT scans now – they need to scan my pelvic before and after a full bladder, to see basically how much leeway there is in there. The radiation must be done with a full bladder and empty bowel.
That all goes well, because they have me, I also get the radiation placement tattoos. This was something I’d only heard of twice before: in order to guide the external radiation beam to the precise targeted areas, they give you four permanent tattoos to line everything up.
I thought it would be a tattoo gun, but it’s an regular needle filled with ink. I get four little pinches, one on either outer thigh, one on the right (their left) of my ancient navel piercing scar, and one at the termination of the mess of scars on my belly, in my pubic hair.
It’s fucking surreal. My body has been so very changed by this.
If I decide to go this recommended route of rad and chemo, I’ll be spending a loooot of time here in the coming months. My hope is that I feel well enough, most days, to write. Writing is what’s bringing me peace, and joy, a sense of accomplishment, and the feeling that despite this derailment, I’m still on my path.
In the meantime, I’m a scrabbooking maniac.
I was saying to the executive director at my job at the women’s shelter: some days I feel so shitty and others I am literally ecstatic. I feel present, and grateful, and interested and invested in my care. I’m still scared, and shocked that this is happening like this, right now, to me, but those feelings are tempered by the sense that I’m going to be all right (whatever the outcome, and I do mean whatever) and that I’m learning something incredibly valuable from all this. Maybe the lesson isn’t even for me, or isn’t only for me. I don’t know. Maybe it is.
I’m back to ‘Well, fuck!’ as a comment. 😦 … I don’t have much more that that … but I’m here on the other end of this ‘line’ through the ethers, thinking of you and lighting a candle on my altar as we speak.