Facing Anniversaries

So I was diagnosed with breast cancer at the end of May 2007 which means I am almost at my ten year mark. When I was diagnosed I hopped online for a lot of emotional support where I met a bunch of great people who really helped me learn, cope and adapt to this new phase in my life.

I got online immediately (probably within a week of my diagnosis) and met so many people who were already through most of treatment and were diagnoses up to a year or two before me. Now I am still in touch with them and watch them celebrate ten years out from their breast cancer diagnosis. I am happy for them but I am not sure how I feel about me.

Honestly I just cant see myself wanting to celebrate ten years since my breast cancer diagnosis. I don't think I have it in me.

When I was diagnosed with thyroid cancer in 1981 at 19 I always told myself I would throw a party and finally talk about it with everyone when I was 20 years out. That didn't happen. So I said at 25 years out. That didn't happen either. Then I was diagnosed with breast cancer, my health fell apart and I am not in the mood for celebrating anything.

I mean I appreciate that I am still here but not so sure I need to throw a party or celebrate in anyway.

Another Anniversary

I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.

We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).

Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.

Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.

It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.

I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.

Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...

In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.

This is an anniversary to celebrate - when I first learned about online patient support.

Cancerversary?

I want to count in decades, not years. After thyroid cancer in 1980, I was pleased when I could count cancerversaries (if the word did exist back then) in decades, not years. I was 26.5 years out and whoopsie a new cancer diagnosis. Breast cancer that time. I was less than thrilled to start counting over.

But now I can say I am 32.5 years out from thyroid cancer and 6.5 years out from breast cancer. Those are nice numbers.

People quote five year survival rates as if they were Gospel. But they aren't. I learned recently that five year survival rates were started in the 1930s for blood cancers. This timeline/goal quickly spread to other cancers and people started believing them.

But they really aren't true. A couple of examples are both breast cancer and thyroid cancer which can return at any time. So five years is good but not great. Thyroid cancer has been known to recur 30 and 40 years out.

Every person with cancer counts their years differently. Some celebrate their cancerversary with a big celebration and their five year date with as an epic event. For more on the five year dates and cancerversaries (which is just a weird word) you can read this very interesting article on how people celebrate and how we got to where we are. It was shared on FB by a friend who was marking his cancerversary and reaching out to those he knew who were in the same boat. I read it and enjoyed it.

But for now, I'll go back to counting decades and waiting.

PS if you do the math, I am really 37 years old as I stopped counting some time ago.

Being an inspiration

Some people have said I am an inspiration to them. I have never really figured out why. Maybe its the two cancer thing. I don't get it. The only inspirations I ever have are how to be more lazy and take a nap. I have not saved the world, raised millions for cancer research or anything so profound. I can be whiney at the drop of a hat (ask my husband for proof).

I am also not someone who celebrates cancerversaries. I dont think they are worthy of notice. But every so often we run into events which are worth noting - like birthdays - they always deserve notice.

However here is a woman who is an inspiration. Jill over at Dancing With Cancer: Living With Mets just celebrated ten years of metastases. Many people when they first think of metastases that this is the end. However we have Jill as living proof that metastases are not the end. If you don't read her blog, you should. She is a normal person dancing with cancer, living with mets.

Those 'cancerversaries'

How important are those cancerversaries? To me not very much. I have never really celebrated one with a party or anything. I think I sort of mentally marked some of them - many of them I forgot completely. I do know some people who celebrate - maybe they have later stage cancers where another year is unexpected after their diagnosis. Its their choice.

I am not sure where the five year thing came from - its the standard in clinical trials - but it has now become our basis. 'The five year survival rates are...' They don't tell me anything more than reducing me to a number. I am not a survivor and I am not a number - both of which come to play in that single phrase. I am a person. I don't plan on celebrating my five years from breast cancer diagnosis this year any more than I plan on celebrating 32 years since thyroid cancer diagnosis. Why? They are numbers. They do not begin to describe my life.

At one point I had plans to celebrate 20 years and then 30 years since thyroid cancer but have never bothered. I don't think I ever considered myself a number in that respect.

Also, I think the five year thing is completely misleading. I think triple negative breast cancer (I had ER/PR+, Her2-)  is mostly likely to recur during the first 18-36 months after diagnosis. So what does that five year mark mean for a woman with triple negative? Five years isn't really the important number. Thyroid cancer has been known to recur 30-40 years out so what does five years mean there?

I guess everyone can make their own choices and my choice will not be to have a party.