Back in the Saddle

I didn’t expect to be here again.

I’m trying to figure out where to go from there, from “I didn’t expect to be here again” but I’m lost. So let’s start with what I know. I’m 30-years-old and I have cancer for the second time. Though that isn’t quite the truth, either. It’s probably more correct to say I still have cancer, but it was hiding for seven years. So this is still the first time. But it’s a surprise because I didn’t consider cancer to be a prominent plot point in my current life. And yet, here we are.

Everything about this is strange. There are dozens of you who will read this and who know me, but weren’t even aware I’d had cancer in the first place. I feel like I’ve been living under witness protection, but it’s all blown up and now I have to confess who I really am. It would appear (for the moment, at least) that who I really am is an angry, touchy bitch. Sorry about that. I was perfectly happy living under an assumed name.

There is a point to writing here, and it isn’t just to moan and rend my clothes (though don’t worry, you’ll get plenty of that if you follow my updates). This is also the place to explain what is happening so I don’t have to answer the same goddamn questions 17 times a day. I am happy to answer questions and I truly appreciate everyone’s concern, but it’s also boring and exhausting hashing and rehashing the same depressing and dismal news over and over and over. So let me go over a few things.

What, you had cancer before this?

Yes, I had cancer before this. I found out when I was 22, specifically a month before my 23rd birthday. This is the Cole’s Notes version — finding out I had cancer was a process that actually dates back to November of 2002 and only was verified in March of 2003, but that’s a story for another day.

What kind of cancer did you have?

It was ovarian cancer. Yes, I was very young to have ovarian cancer. I am well aware of this fact, yet it is the one people most like to point out to me. Even medical professionals. Basically, I am a special snowflake. A snowflake that had her ovaries, uterus, cervix, and appendix taken out, to then have her remaining body parts pumped full of drugs made from metal and trees.

You had chemotherapy? But chemo is so bad for you!

So is cancer.

If you had ovarian cancer and they took out your ovaries, how do you have the same cancer again?

It can come back in other places. Right now, it appears to be in the lining of my abdomen. The peritoneal lining. The cells there are similar to the cells involved in my ovarian cancer. So far I believe I am lucky, the cancer does not appear to be in my lymph nodes or any major organs, so while it is recurrent, it is not metastatic recurrent. If you’re interested in the difference, you can Google it.

What kind of treatment will you get?

I don’t know! I saw a surgeon on July 21st. He’s meeting with all his surgeon friends at Princess Margaret Hospital and they will flip coins until all six of their coins are either heads up or heads down. That will determine whether or not I have surgery. I’ll know what the coins decided on August 23rd. Then I will sit down with my medical oncologist and she will take a look at my social calendar to figure out when I’d most like not to be losing my hair and feeling crappy, and will schedule me for my first chemo session at for that time. I’m guessing it’ll happen right before the weekend that my brother turns four and my friends have a big wedding party.

You have a four-year-old brother?

Yes, I do. His name is James and he’s pretty cute.

Hey, are you going to [anything]/want to do [anything]/planning on seeing [anything] on [any time after August 23rd]?

I don’t know and it actually really bothers me to be asked about anything past that date because I can’t plan anything. I don’t know if I’ll be sliced open in a hospital, shaving my head, napping 18 hours a day, or anything after August 23rd. The most fucking annoying thing about this is the inability to plan. I love organizing things and making plans and having things to look forward to, but not having a treatment plan in place makes it really difficult to do that. And even once it is in place, it will still be difficult for me to plan things in advance. So if I seem snippy or short when you ask me if I am going to do something or be somewhere, it’s not you. I’m frustrated and don’t want to think about the future beyond the next few weeks because it makes me sad.

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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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4 Responses to Back in the Saddle

  1. A friend's mom says:

    Hi leeshlou, LL gave me your blog address and I am wiping the tears from my eyes as I write this. And yet your writing also made me smile.because it really showed what a truly special person you are. I am so glad that you and my daughter have found such great friendship and I hope to meet you some day soon. My support and caring are with you and ….and…and…. what?….. hmmm…..feels like I should say more but what is there to say except it sucks dammmit. ~~PMT

    • Bruce Tobin says:

      Hi leeshlou,
      I remember meeting you about a year ago in TO with LL, and you forming a lasting impression on me: I was delighted that my daughter had found a friend like you. That was before I knew about your cancer. Now, reading your blog, I am really moved again. I like how you tell your story, and I’m going to keep listening to you. Great big hug, girl!
      Bruce (LL’s Dad)

  2. Jeannette says:

    Please tell me this isn’t you? The writing and the story makes it almost impossible for it not to be you. I’m not sure how I got here, but I did and if this is the blogger formerly known as Louise, I’m really sorry you are going through this. I had a regional recurrence myself and finished treatment round 2 about a year ago. I found some great information that really helped me be proactive in taking an integrative approach. I’d love to pass on some resources to you. If nothing else, it is a bit of a distraction from all the crap right now.

    • leeshlou says:

      Hi Jeannette, sorry it took so long to reply — WordPress marked your comment as spam for some reason. And yes, it’s Alicia formerly known as Louise Anonymous (Louise is my middle name, thus all the permutations. I tried to be alicialouise but WordPress informed me someone already took that name). I’ve been hit with a recurrence 7 years out (which I know you can appreciate as a shitty thing). I am going to have to catch up on your blog — I haven’t been following anyone for awhile. If you want to share some information with me, you can email me at alicialouise at gmail dot com. It’s funny that you found me after all this time on a new platform with a new name. Like Canada, the internet is oddly small despite its size.

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