Wednesday, April 13, 2016

Stats, Research, Conclusions and other Bullshit

As of this April 15, 2016, I will be in remission for a solid 8 years. This is fucking awesome, make no doubt. So why would I be bitching about this existence called young adult cancer survivor after almost 8 years? Because there are still lessons that EVERYONE needs to learn beyond the numbers.

Since I've written my last post a few months ago, here's what has been going on with me medically.

1) I had a second surgery on my left foot. The first one, in May, was for a bunionectomy and a metal calf extension because my muscles are too tight and short. My bones are crap, according to the orthopaedic surgeon. So I had to get a metal plate drilled onto the top of my foot to keep my bones together. I'm good to go til June, when the surgeon checks out how my foot is doing and to see if should move on to the other foot. Why are my bones crap? Could be from the chemo I had. Or could be because of the kind of breast cancer I had. Who knows?

2) I've had some spells which seem to be reminiscent of my childhood epilepsy--except for a spell in June, when I passed out cold and had trouble talking when I came to. I had mild aphasia for about an hour. I had a migraine for the rest of the day and night. So far I've had two sleep deprivation EEGs, one ambulatory EEG, and an MRI done, all of which show that there is some sort of anomaly in my left temporal lobe but it is unknown what that is. No tumour though. Yay.

3) I had an endometrial biopsy done because even though I had my ovaries out in December 2014 due to increased risk of ovarian cancer for being a BRCA-2 variant carrier, I was still bleeding and cramping. It's not cool to have your period while going through menopause. Endometrial biopsies SUCK. I cannot emphasize this enough. The whole time leading up to the procedure, I saw 3 doctors, all of whom told me that a) it was just a slightly more invasive pap smear; b) I might have some cramping but it would be quick and not that bad; c) I could just take Advil to get rid of pain if in the odd case, pain persists. All of this is bullshit. I have one friend who had the procedure done recently as well (being a BRCA carrier, like me), and she was the only one who told me the truth. This shit fucking hurts. If you have given birth, you will know what I mean when I describe it as an active labour contraction. You're having some of your insides sucked out through a skinny tube that was stabbed past your cervix into your uterine lining. It's not pleasant.

4) My asthma has gotten worse this year, and I had a persistent cough that lasted over a month. So my general practitioner (who is fucking awesome, and who fortunately for me also works at the Cancer Agency, so she's my liaison and advocate for a lot of things) ordered me a chest x-ray. I really wasn't expecting anything from that, so when she called me a day after I had the x-ray done to tell me that there were spots that showed up on my lungs, it was quite a shock. She told me that the radiologist who looked at this film was concerned enough to look back at previous films over the years, and saw that those spots were on the past films. And this was the first I've heard of this. So I got a CT scan, and as of now, they are thinking that the spots are scars from radiation. I will repeat the scan in six months.

Why do I detail all of this? Because I'm sick of people thinking that when you are a young adult and you've survived cancer, that you're cured, and that if you continue to worry about a recurrence, you're neurotic. When I went to see my oncologist, who is a very nice person by the way, she made me feel like I was a head case. She said since I was seven years out, I shouldn't worry about recurrence because the recommendation given by oncologists is that if you are over 5 years in remission, your risk of getting cancer again is much lower. So I told my oncologist that I have several friends who have Triple Negative Breast Cancer like me who have had a recurrence 8-12 years into remission. She told me that it was the company I keep, not the norm. And maybe I should seek therapy for my fears. You're fine, she said. You don't need to worry. Like it's so easy! Of course it is.

Fuck. That.

I will worry about this, and I will find other medical professionals who will take my worry seriously. Because this is my life. And it shall not be taken for granted.

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