Wednesday, January 29, 2014

The Meaning of the Median

Eight months ago today I was lying on the couch eating Trader Joe's fish sticks. Those days, I was so short of breath that sitting at the dinner table and eating was a lot of effort, so I took most of my meals on the couch. The phone rang, and I got the terrible news: the biopsy confirmed that I had cancer.

Eight months.

I am officially at the median survival time predicted by the (most likely outdated) statistics. 

What better day than today to dust off Stephen Jay Gould's great essay, "The Median Isn't the Message," writing that is often circulated among cancer patients, with good reason. He does a great job of explaining why he felt confident that he would outlive his cancer's median survival of eight months (and he did). He reminds himself, and us, that the median tells us 50% of the people with this disease will live longer than that point. The right tail of this graph can stretch out for quite a ways, and based on reports from several lung cancer patients who have lived with this disease for years, it does.

I hope to keep pushing further and further into the right side of the graph.

I have a scan on Friday and I have come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions, and general crabbiness. The logical side of me always grapples with this weird fear because nothing is actually different before and after the scan. The event itself doesn't change anything, only my knowledge changes. And yet, it still freaks me out.

I will get the results on Tuesday. Fingers and toes crossed for a good report.

Thursday, January 09, 2014

Coming Out with Cancer

I was at the grocery story the other day and caught sight of an acquaintance I hadn't seen for over a year. I started to walk across the store to say hello, when I froze. I realized that she had no idea about my diagnosis, and I would have to decide whether or not to jump into that minefield when she asked how I have been over the past year.

So instead I walked the other way.

Meeting new people is sometimes a bit awkward for me now, since I never know if or when I should drop the "I have cancer" bomb. I still have my hair, so there is no tell-tale chemo sign. Overall, there is really no external way to tell that I have anything wrong.

Yet, lung cancer has become an important part of my identity. There is not a day that goes by where I do not think of it. I have become active in the lung cancer community, and I have made new friendships because of it. It has profoundly affected who I am and how I think about life. So, like it or not, it is part of me.

I am not ashamed of having cancer, and I am happy to talk about it with people, but the initial coming out is wrought with uncertainty. Will I get the "pity face?" Will I get the list of things I should/should not eat/drink/breathe etc.? Will I get the awful silence that follows the exchange, "What stage it is?" "Stage IV." ". . . . . . . . . . " (That really happened. I wanted to say something to make her feel less awkward, but I couldn't think of anything, so I just sat there as she squirmed.)

There must be other people who feel this way, people who have an important part of themselves that is a somewhat touchy subject. Perhaps this is how members of the LGBTQ community feel? Perhaps people who have experienced a life-changing event feel this? There is no external marker to show that something big is going on, but it is there, and it is important.

I'd love to hear from others who have felt this way, if you woud be so generous to share your thoughts. And if I'm way off base, tell me that too!

I used to say that I wanted to live a hundred lives in my lifetime. This upside of this cancer journey is that it is helping me to walk in other people's shoes and see with their eyes.

There is the yin in that yang.

Monday, January 06, 2014

When Truth is Not Absolute

Jason and I adamantly believe in being honest with the kids. No matter how difficult or awkward the question, we always strive to answer in a straight-forward and age appropriate way. This includes all topics, from Santa Claus to where babies come from. (Side note - like most kids of his age, Zander has this fascinating ability to simultaneously believe in something and know that it is imaginary. He knows that Jason and I fill his Christmas stocking, but he also believes that Santa is real.) (Side side note - when I was pregnant with the girls, I prepared an explanation about where babies come from, complete with gardening analogies. Two-year-old Zander was totally disinterested.)

So how do you tackle telling kids their mom has cancer?

Mom, is Casper the Ghost real?
No, he is a character in a story.

We told them that I am sick, with a big sickness that requires some really big medicine. And sometimes that medicine makes me feel really tired and crummy. We told them that it is a sickness that takes a lot of work to get rid of, and that the doctors are doing everything they can to fix it.

This is, essentially, the truth.

Mom, are ghosts real?
No. ...but some people think spirits are real.

I haven't gone into the whole horrible prognosis of this disease with the kids, largely because I don't really accept it as absolute truth myself. There are people who have lived with this disease for many years. Who is to say I'm not going to be one of them? How would learning the meaning of the word "terminal" now help these small beings deal with an enormous grief that may not happen until quite a ways down the road?

Yeah... Some people believe ... that if someone you love very much dies, that person's spirit can come back and visit. You won't be able to see or touch, but you may sense this loved one.
But is that real?
...some people think so....

I do not accept that my future is a foregone conclusion. I cling to hope and all the possibilities that hide in the unknown.

I'm still expecting my deus ex machina in Act V.