I had just moved to Seattle and started a new job. I was married to my best friend and I thought everything was amazing. Little did I know that within three months of moving, I’d be diagnosed with stage 1 oral cancer in my tongue, in one year I’d be recovering from stage 3 cancer treatments of surgeries, radiation and chemo, and in about two years I’d be separated and moving towards a divorce. I was in for a brutal wake up call.
Getting through this experience was beyond difficult, but I turned to blogging to help me. Even though my old blog is shut down, I still have it saved. I’ve decided to repost the blog series from when I went through cancer treatments. This is the first post I wrote after I’d had a semi-glossectomy on my left tongue to remove a stage 1 squamous cell carcinoma. I hope this series helps to inform on what a cancer experience really is like, and to be helpful solace for those going through treatments. Finding others who have gone through what you have is critical. This disease can be very isolating.
I’ll be reposting the relevant excerpts so there may be weird lead ins (as you’ll read below.) I thought about editing them, but I think it’s more accurate to leave them as they were originally written.
Please let me know if you have any questions.
October 17, 2009
Ok, so some of you reading the cancer thing are probably sort of freaking out. So I’ll start first with how I am today – the cancer is GONE. I don’t need any further treatment and reoccurrence rate is low – like 10% and we are watching it super close. I didn’t plan on talking about this, but people have been encouraging me to since it’s an odd case (I’m not the target demographic) and I could help people be more aware. So today, I’ll advocate about oral cancer prevention.
Ok now, I’ll start at the beginning. Seven years ago (2002 – I was 22), the dentist found these white spots on my tongue and said it was called Leukoplakia. He said that whenever someone has oral cancer they always have it first, but having it doesn’t mean I’ll get cancer. And he wanted me to get it biopsied. So I did and it was pre-cancerous. That was scary at the time. But over the years, I had regular check ups with oral surgeons and there was never any change.
About seven months ago, the spots on my tongue started to look more like canker sores and were really hurting. They just didn’t go away. I knew I needed to go in and see someone but I gave it some time to see if they would go away on their own. After 6 months they were still there. Went into the doctor who wanted to biopsy them. So go in, they decide to put me under for it because of where the spots were and while they were in there decided it was probably cancer so removed a section of my tongue. It was about 1.5 inches from front to back and about a 1/2 inch from the side in. I remember waking up in the recovery room and the nurse telling me they had to remove more than they had intended – I started crying and told her I was scared. I knew it was cancer then. No one needed to tell me.
When I was more awake, the doctor explained that when he went in and was able to see better, he and other doctor’s felt strongly that it was cancer so decided to remove all the spots rather than just biopsying so I wouldn’t need to go back in. I had intended to go back to work the next day – a biopsy wouldn’t have been a huge deal. I ended up being out for a week.
It’s now been 2 months since the surgery and I’m doing well. I’ve had blood work and a cat-scan and the cancer hasn’t spread anywhere. The tumor and all areas were cleanly removed. All the results are really positive in it not spreading. That said, it can come back, but I’m learning that the odds aren’t real high (although I am at low odds for having this at all so I don’t really put much faith in that). The doctors are watching it all really closely. I was stage 1. We caught it early which is really good. For oral cancer, if you have stage 3 or 4, which is when most cases are caught – it can easily be too late. Something like 90% of the oral cancer cases are men over 45 years of age and tobacco users. I’ve smoked 2 cigarettes in my life and never even smoked pot. I’ve never chewed. I am a freak case. It just is what it is. Mentally, yeah, I was freaking out at times but I’ve overall dealt with it pretty well. I remind myself how many people get sick even younger than me, for the same non-reasons, and how my issue was treatable and for many people that’s not the case. And beyond just the implications we associate with “cancer” I’ve at times felt like I’m damaged now – having my tongue cut into (it’s barely noticeable now). It’s less about it being noticeable and more about me knowing that it’s happened. I’ve had my breakdowns but mostly, I’ve been ok. Really ok.
Broader context – the idea of cancer scares the shit out of people. But the truth is that the impact of cancer ranges from having a mole removed to death. If this had been called something else, yeah I still would have been affected, but the idea of “cancer” definitely freaks you out more. I have had a really strong reaction to people smoking around me now. I never liked being around people who smoked – I just don’t like the smell – but now, I actually get mad. I don’t show it publically, but it infuriates me. They are willing put themselves at risk for something that they have no idea how much it is to deal with. And it makes me angry that I got this when I don’t even smoke. This emotional response has been the one that surprised me the most from this. It also taught me how important it is to see your dentist every 6 months (I do anyway, but I know lots of people don’t) and make sure they and you are looking at all of your body, including your mouth for anything that isn’t normal. It taught me to see a doctor sooner – if I had waited longer it might have been stage 2 or moved into my lymph nodes. How stupid of me to not make time for a doctor’s appt – like my life at work is so important that I can’t make time for that? Ridiculous. It’s so foolish I can barely admit it. Lastly, trust your gut. I knew before I went into the doctor that it wasn’t right. Everyone says this kind of stuff when they go through something and I guess sometimes it’s just having to experience it yourself or to someone you love. I hope those of you reading this are close enough to me to pay attention. 🙂
The other reason I didn’t want to share this real publically is I don’t want people treating me differently or pitying me. So don’t. I’m no different than I was before. And I’m fine. 🙂