Origin story

My next appointment with oncologist is tomorrow morning. I’ll have my blood tests run to make sure my white cells are high enough to go ahead with chemo on Wednesday. I have a feeling my counts might be low enough that I’ll have to redo the test on Wednesday to decide whether or not we can go through with it this week or bump it to next week. I just squeaked past with my second chemo and it tends to become harder to crank out the necessary cells the more treatments you’ve had.

I realized recently in the nearly two years I’ve been keeping this blog, I’ve never really given the full story of my cancer diagnosis and recurrences. So many people only know me post my first recurrence or post my second recurrence in some cases, and the story is long and I usually just figure people will fill in the gaps when I make references to different points in time. I think there are a lot of confused people too polite to ask questions about my illness lineage though. So consider this post a recap of the last nine and a half years; a way to bring everyone up to speed. Also I’ve heard from people I read your blog but I wasn’t sure if I should bring it up since I don’t know you well or I thought it might be weird for you or maybe you don’t want to know who is reading your blog and I just want to assure everyone that I don’t mind if you read my blog, you can ask me anything you want about it, I don’t kid myself that this is some kind of private place, and I actually like knowing who reads it because, well, I just do.

I was a student at Concordia in Montreal in 2003. It was the first day back after the winter break. I had gone to my two morning classes and went home in the afternoon. My boyfriend had made soup and sandwiches for lunch and we sat in the kitchen eating and chatting about one of my new classes. As we were finishing up, he said, A nurse called for you from the health clinic and wants you to call her back. I wrote the number down.

I was curious but not immediately concerned. I couldn’t figure out what she would be calling about, then remembered I’d gone in for a pap smear in November when I was renewing my birth control. Totally normal exam. I guessed that the test had been abnormal and that they wanted me to repeat it. That happens to women all the time, so I didn’t think much of it.

When I called her, she wasted no time into launching into the information. Extremely abnormal smear results, we’ve never seen this through our clinic before, so sorry you are only finding out about this now but the lab sent back the results while the clinic was closed for break, the pathologist marked this as urgent, ultrasound and blood tests scheduled for tomorrow, colposcopy scheduled for next week, the doctor needs you to come pick up the results to take to Montreal General

I started crying the moment she started telling me this. I sobbed out, okay, okay, okay as she gave me the information. Her name was Louise and when she was verifying the information on my health card she said, you’re a Louise, too, and I said, it was my nana’s name, and when she was giving me the addresses and room numbers of the places I had to go, I asked her to repeat the information because I was crying too hard to see the paper. I was sitting on the floor in the bedroom and my boyfriend came in and sat in the chair behind me and rubbed my back. It felt like hours after I hung up the phone before I could tell him what happened, hours before I could get up from the floor.

By the end of the next day, I was pretty sure it was ovarian cancer based on the ultrasound and the grimness of the doctor doing the exam. When I was leaving, when I was on the threshold of the exam room, one foot in the hallway, he said, you have cysts on both your ovaries, without looking up from my file. I said, oh, and I closed the door behind me.

By the end of the week, my blood tests confirmed that in all likelihood, based on what was seen in the ultrasound, I had ovarian cancer. I was referred to a gynecological oncologist.

Then there were the weeks following in which I had more tests, more blood work, more visits with doctors. I told my professors. I told one of them when I ran into him on the metro after class and he told me his wife had just died of a brain tumor. Then I got the phone call telling me I was going in to surgery in three days. I had surgery two months to the day of finding out I was sick.

With the hysterectomy came the definitive diagnosis. Stage IIIa, grade one serous epithelial ovarian cancer. Optimally debulked, meaning all tumors were removed. Six treatments of chemotherapy to mop up any lingering cells. Then I was better and everyone thought I would stay that way. I was young, my surgeon was gifted, I responded well to chemo. And I was better for seven years. I was out of the woods.

On July 2, 2010, I got a call from my dad. A nurse from Princess Margaret Hospital was trying to reach me but there was no answer on my phone so she called him. She wanted me to call her back.

I was in the back of a van coming home from a Canada Day party. I called the nurse and she told me she wanted me to come in for my follow-up of my latest CT scan earlier than we had initially booked. I said okay and I hung up the phone and put my head in my lap and started to cry.

Much of what happened after that exists in the archives. It took some time to figure out treatment. I was told I wasn’t treatable because of my low-grade cancer, I had a second opinion, had surgery, found out my cancer had returned as an aggressive type. Had chemo to mop up any lingering cells. Did okay despite numerous complications. Finished treatment. And found out at the end of February in 2012 that the cancer had recurred again.

So now I’m doing chemo again. This is the first time I’ve had to do chemo not as just a mopping up of stray cancer cells, but as something meant to shrink actual tumors. I almost don’t believe it can do that. I mean, I know it happens, I know enough people who have had tumors disappear after chemotherapy. But it’s abstract to me. I don’t feel the tumors — the largest and the only one that appears on the CT scan is one centimetre — so I don’t believe they are really there. I know it’s there. I just don’t believe it. I wish I could see it.


About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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9 Responses to Origin story

  1. Nancy says:

    Now I’m less confused. Thank you. But more sad. I mean, I kinda knew some of your story, but the reality of how young you were (and are) settled in with this post. I noticed in this post you referred to it as “my cancer.” I’m just curious—and feel free to ignore my question—do you consider it “your” cancer or “the” cancer? I had a mysterious illness as a child and I still think of it as tagging along through my life. It has become “my” illness. Although some days, I prefer to think of the illness as an “it,” and in doing so, I can remove myself from it.

  2. Jenny says:

    I did read back a long time ago now to see how this had all started and now I know. Thank you for sharing. I was under the impression that ovarian cancer couldn’t be found from a regular pap smear. Now I’m really confused!

  3. Thanks for sharing this, Alicia.

  4. This is very useful to know. I can imagine how frustrating it is to have relapses every time after you are done with your treatments, but look on the bright side: the current tumor is hardly detectable since tumors smaller than 1cm are microscopic and can’t be seen by CTs. So yours is still almost microscopic and seems totally manageable. Please keep up.

  5. I’m one of the “I read your blog but I wasn’t sure if I should bring it up since I don’t know you well” people, so – now you know I’m reading.

  6. Oh, Alicia. I had also wondered (when you started this blog again, you alluded to the first time you found out, but didn’t elaborate). I just assumed that the cancer had announced itself through pain and/or blood, not a routine exam. What a shock to hear those words over the phone. Thank you for sharing.

  7. Pingback: If you’re new… | Second Verse

  8. rroserred says:

    Hi Alicia, To let you know that I’m now newly following your blog starting today. I’ve been reading Suleika Jaouad’s posts in the NYTimes and read your comment. I have a wordpress blog, so I clickd on your link and read about you. I’m Tsultrim there (with a giraffe face for an avatar), but here Rroserred, but my name is Fionna, and I”m 62 and I live in Colorado. I have MS, not cancer. Had some ovarian cysts also but they were benign and besides, I was in my 50s then. So, I’m sorry you are going through this again. And I completely get it that you want to know the people reading your blog. So here I am, interested in how you are, and appreciative of your writing. Take care and I will write again.

  9. d says:

    thank you for this – i have oc 3c and was unable to be debulked the first time – too advanced – they opened me and closed me right back up again – had 4 chemos and then an “interval debulking”, and am now on the chemo road again for a total of 8. I also blog – ovariancancer3c.wordpress. It sucks. No way around it. I’ll be following and wishing you the best.

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