The body doesn’t discern between good stress and bad stress. So while I was excited about giving my talk on resiliency at my home stage at the Algonquin Theatre, my body translated those feelings in a similar manner to my anxiety over my September 11th meeting with the oncologist – into Freaking Out.
Eventually, I waded through those feelings and arrived at the cancer centre at Royal Victoria Hospital in Barrie on the 11th. I knew whatever she had to tell me would inform what I spoke about two nights later on stage. It was all calling into question my own resiliency, of course.
Dr. Ball had received the results of the CT scan, and I learned over the course of our conversation that she also had presented my case at a round table with a number of other colleagues, including a radiologist, a colonoscopist, and others. Their professional consensus was one of concern.
Here are her notes on the issue (the issue being… me):
“Kathleen’s CT scan was reviewed with her today. Unfortunately, it does have a few concerning findings present. There is some thickening noted at the cecum of uncertain significance and some mild nonspecific thickening of the terminal ileum. Mild fat stranding is seen in the right lower quadrant. In segment 8 of the liver there are some small hypodense lesions too small to characterize. These likely represent small liver cysts and will be followed. There is a left adrenal nodule measuring 13 mm. The previously identified complex masses within the pelvis are redemonstrated similar to prior MRI. Bulky uterus was again described. There is a moderate amount of free fluid seen and mild fat stranding within the pelvis. There are slightly prominent lymph nodes in the retroperitoneum involving the periaortic region and aortocaval region measuring up to approximately 15 mm and nodules within the pelvic sidewalls measuring up to 22 mm suggesting lymphadenopathy. In our discussion with the radiologist at our multidisciplinary tumour board meeting, he was quite concerned about the lymphadenopathy and the abnormal masses within the pelvis.”
It took us a while to work through all that, but in terms of triage, they decided that the next step was to address the findings in the colon in order to confirm, or rule out, colon cancer. There is a particular swelling of my lymph nodes which almost certainly denotes cancer – at this point, their mission is really to ascertain where the cancer originates and create a plan from there. Dr. Ball informed me that a surgery was guaranteed at this point, just a matter of when it will occur – she informed me she is holding an OR space for me mid-October, pending the results of the colonoscopy they intended to schedule. When pressed, Dr. Ball gave my situation an 80% chance of being cancer, but as always, the challenge is that nothing can be confirmed without a biopsy, and the only biopsy I’d had was uterine, which has come back with atypia but not definitive cancer at this point. I was encouraged to continue on the Provera, which has caused non-stop bleeding for nearly a month.
The 80% number, along with the idea that my ‘case’ (my body) was being discussed at the table of stranger professionals, was a lot to take in. I thought back to my initial resistance to even taking the Provera – now it looked like things would never circle back to that simplicity.
I did my best to integrate this new information, but there still wasn’t anything to grab on to, to point my finger at. I felt like I was spiraling wider and wider around a problem that’s growing, but it’s the issue of the forest for the trees – I just can’t see this clearly.
Filled with gratitude for my friends and family, who checked in, asked questions, and offered various supports, I made it to Friday the 13th – the night of my presentation for She Talks. It was an amazing night, filling my heart with peace after hearing the voices of such compelling and compassionate speakers. I was to go last, and after some technical difficulties, I delivered my talk. I felt amazing about it! People could relate, they connected with me, and I met women who I know will cross in front of my path again.
After that event, I was locked pretty firmly into colonoscopy mode. I had a major issue with this – I had been raped while unconscious so this was more than a little uncomfortable for me. Now, it isn’t a major trigger, but I’d never been sedated before, and I didn’t know how I’d respond. Everyone would tell me the worst part was the prep, but I kept thinking about being alone and vulnerable while a man who is a stranger to me manipulates my body.
I did try to reach their office several times, but between their 72hr response time and then a technical issue where they lost voicemails, AND my info package with instructions being bounced back from my address, I felt like I’d been left in the dark. Finally, the Friday before the Tuesday procedure, a nurse called and I told her my concerns regarding the procedure and requested my girlfriend’s presence in the room with me. I explained why, and her response was, “Well, there must be some kind of protocol for that!” Well, I hope so, I told her. She told me she would respond on Monday.
On the night of the 29th, two days before the colonoscopy, I noticed a problem on my legs getting much worse. Since September 9th, at work, I’d noticed a hard, tender lump beneath the skin on the back of my left leg. Thinking it was a bruise or bug bite, I kept an eye on it but didn’t worry much. I want camping with my mom for 5 days, did some major hiking, and it didn’t seem to do much in terms of growing or receding it. Then in the previous week, I’d noticed distinct changes – the site was much larger, very red, hot to the touch, and seemed to be moving away from its original spot, more toward the side and then the front of my leg as well as down the back. The pain was approaching excruciating, and I couldn’t have anything touch that spot.
Kai was over for the night and had gotten into bed early because her day had been a bit of a mess already. When I checked my leg in the light as I put on my pyjamas, I groaned. It was a mess, bigger than ever and really nasty looking. I’m prepared to drive myself to emerg, but Kai insists on coming, and we drag our sleepy butts across town to the hospital, knowing that not only did we have an early morning the next day because we had plans to see a medium in Orillia, but that evening my colonoscopy prep started, and we needed to get to our airbnb in Barrie for that.
The ER visit was incredibly quick, only a couple hours and we were out by midnight. The doctor examined my leg, and while doing so, we discovered I had the same, though smaller, issue on the other leg. Uh oh – one leg is kind of normal. Two legs? Bad signs. Over-achiever strikes again.
He diagnosed it as thrombophlebitis – blood clots. We could only observe them in the surficial veins, but having two legs affected upped the risk factor, and the concerns regarding cancer did so as well. He was worried that I may have developed DVT – deep vein thrombosis, which holds the risk of a pulmonary embolism, among other threats. He gave me an injection for a 12-hr blood thinner, knowing my colonoscopy was imminent and I couldn’t be on blood thinners for that. He put in an order for an emergency ultrasound and told me we’d be called back in in the morning with an appointment time when the req went through.
Well, I was up all night in agony, both my legs throbbing and in acute pain like a burn. My pain meds didn’t cut it, and I barely slept. Then came 10am and still no call from the hospital. Kai called – and called – and called, and continued to be hung up on, misdirected, or told there’s nothing they could do. My req was lost somewhere, the blood thinner was wearing off, and when they finally offered me 2:45pm, I knew we’d miss our appointment in Orillia as well as getting to enjoy the airbnb before the prep began.
I called the hospital myself, nothing. Called my nurse practitioner to see if she could intervene – she said she’d try her best. Immediately after I hung up with her, the hospital called again – they moved people around and if I could come right then –
“We’re on our way! Less than ten minutes!”
Kai and I ran out the door, raced (safely) across town, and I got the ultrasound. Whew. We were late for our medium, but she probably predicted that! That, however, is a story for another day. I will say, though, that the ‘other side’ told me not to worry about all this medical stuff. It’s not the end of me!
A mix-up with our airbnb meant we had to stay two nights in Barrie, which was fine with me – we were on my ‘weekend’. The airbnb the first night was a creepily Spartan bedroom and bathroom in Innisfil – perfect for going to the bathroom in 12-15 times per night. I drank organic sugar-free ‘gatorade’ and bone broth in between hulking litres of The Solution, which was weirdly saccharine (sweetness to cover the ominous). The first round, I was pretty sure it was going to come out the wrong way, but by round two I had a little routine down. Kai and I watched videos of kittens and goats, and I actually slept well.
Because of the mix-up with the paperwork that was sent to me via snail-mail and which had bounced back, I never got the complete scoop, omitting such details as not being allowed to drink the entire morning of the procedure. So here I am, your favourite hydrated hyena, feeling very afraid when the nurse made a moue of discontent upon learning I’d had about 500ml of water already that morning.
So instead of going right in, Kai and I sat there for a couple hours while the water made its way out the well-travelled path. The doctor came in and chatted with us, mostly to Kai because she was to accompany me. She said after that she thought he was trying to embarrass her into bailing, like she might see my insides and faint, and then, as he kept pressing home, he’d have TWO patients!
Kai prevailed and eventually, after pulling out more than twenty piercings that hadn’t left my body in decades and now had been evicted twice in two months, it was time. We walked over to the procedure room, which was cramped with three nurses, the doctor, and the male anesthesiologist. I got into position, with Kai well in my point of view, my bare butt aimed toward the doctor. They placed the needle into my hand, promptly blew out a vein, tried again, and away I went.
Kai says I tried very intently to impart some wisdom on her before I went out, but I’m sure she’s making that up. She also said that when they were done and wheeling me out, I waved like a popstar and thanked everyone for their amazing work. Now that, I believe!
Turns out my colon is as squeaky clean as the day it came into the world with me. No polyps, no tumours, nothing to biopsy at all. The spot seen on the CT could not be replicated. My colon is golden!
Kai and I were both shocked, because of all the potential outcomes, and after all the hard news we’d heard regarding my health, an outcome like this hadn’t been on the radar. We celebrated because in itself, it’s amazing news… But when it comes to my health, it brings us back to the drawing board.
Only one day passed between my ass investigation and my follow-up with the oncologist. Back to Barrie after a 12-hour night shift. Me at my best!
We saw Dr. Ball fairly quickly this time. I told my nurse advocate Kristi about my blood clots, and she was grumpy at Huntsville Hospital for not sending the ultrasounds results along. Then Dr. Ball came in and basically said, yay for no colon cancer but I still want to move ahead with the hysterectomy (including potentially losing both ovaries) in a couple weeks.
So I said, I hear your ‘chop chop’, and I raise you a ‘how about we just wait and see and I keep taking the provera and in a couple months we can book another MRI and CT scan and compare, to see if it’s helped?’
And she said, perhaps I did not adequately impress upon you the deep level of concern I and my entire team of genius experts have, based on the size on your enlarged lymph nodes. And I nodded and thought that yes, maybe I did not think that was as serious as it apparently was. So she explained to me why, what could be causing that (multiple choice where all the answers are cancer except one that’s only half cancer), and what the risks are with waiting. We were at an impasse. She said she wouldn’t drop me as a patient, but that she would write in my file that my decision was against her expert advice, basically.
For me, it came down to the thought of having a complete hysterectomy without even ever getting a diagnosis. I would always wonder if I were that ONE person whose readings got read all wrong, and who just had an inconvenient collection of maladies, none of which and certainly not all of which were cancerous. I needed to know for sure before I could consent to losing my precious female parts that I very much enjoyed and appreciated, periods and all.
And we actually arrived at a compromise. Dr. Ball suggested we do an exploratory laparoscopy, biopsying pretty much whatever she could (uterine, lymph node, and ovary if possible) as well as doing a type of ‘wash’ that could then be tested for cancer. It was day surgery, but if they found cancer, I would have to have that follow-up surgery relatively quickly thereafter. And no longer ‘against medical advance’ but something she saw as a good option.
I can’t believe how positive I feel about this decision. It feels like we arrived at something that works for everyone, but as the patient, I need to be the most important factor here. And after our conversation and plan today, I really do feel that way. I don’t like the idea of having an additional surgery, but I feel like this will keep me from ruminating over this decision for the rest of my life. As Dr. Ball said, this is life and death. But my relationship with my body is something I’ve fought tooth and nail for, and I feel as though I did myself a service by standing up for that and meeting in the middle.
I see my Nurse Practitioner tomorrow to get some answers on these blood clots and to talk about getting a walker or something, because the night after my surgery is Take Back The Night, held by the organization I volunteer for, Muskoka Parry Sound Sexual Assault Services. It would be silly to sit that one out.
The laparoscopy is October 17th, the day after I give a deputation to the town of Huntsville on Hexagon, my women’s land proposal. There will be a pre-op some time next week, and a follow-up on Halloween. The hysterectomy, if needed, will occur in November. I’ve taken a break from writing for the Doppler while I figure all this out. Winter is coming and I have a safe and cosy room to enjoy. I don’t like that this is happening, of course, but it is happening. And I can’t think of a way that makes more sense.
You are amazing Kathleen. I love your over achieving attitude. You are a brightly shining gem in everyone’s life that knows you. It is your attitude, humour and sense of adventure that will once again make you a survivor!
Much love my friend. Jeanine
♥ ♥ ♥ Thank you Jeanine! Your support means the world to me.
Well, fuck! What an adventure that was … good to hear your colon is squeaky clean. 😀 and kudos for sticking to your guns and finding something that works for you. 🙂
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