Sunday, September 23, 2007

She's not sick, she's a survivor

Edited below.

This is one of those posts that has little tidbits of thoughts that have been stuck in my throat for awhile now. Things that I would write in book and close the cover on, but haven't been willing to put out here. It seems like time though. Time to unclog the drain a little.

Whymommy is educating again. She has written a post about seeing a group of colleagues for the first time since her diagnosis, and the different responses she received from people. What struck me the most was the interpretation that someone inquired of the chemo, "Is is working?" Just like that. Blunt and intrusive.

That is how she has taught us to see it. This person was another scientist, full of curiosity driven by a penchant for research. Not necessarily a concern for the person standing right there in front of them.

In her narrative, you learn people's responses that were comfortable for her, and the ones that left her hurt and angry. Feeling more like a project than a person. We learn more about how to treat those we encounter who are fighting cancer in the present.

Sometimes though, I want to ask those questions. I want to know if it's working. I want to know what the doctors are saying.

I want to know how my friend is doing in her battle.

More than that though, I want to know how my friend is doing in her life.

There is an elephant in my room. The elephant is the fact that IBC is a killer cancer. The elephant is that more women don't survive than do. And I walk around this elephant, kicking it as I pass by, wishing that the facts weren't staring me in the face so that I could never have even a fleeting doubt.

Deep down, though, the facts don't have an impact on my belief that Whymommy will beat this. I truly believe that when all is said and done, we will have nothing but anniversaries to celebrate and years to add to the length of time she has been a survivor.

And I hope adding to the length of time that she is an advocate for IBC survivors.

Because there is something about all of this that bothers me. It isn't easy to talk about because I'm so busy trying to sound positive all the time.

The latest issue of Parents brought it to a head though, and I'm going to go ahead and say it.

People don't want to hear about Inflammatory Breast Cancer because it isn't pretty.

I don't want to diminish how happy I am that Goody Blog featured Whymommy and IBC recently. I am so happy and grateful that they did that, and then got part of that information in print as well. Many many thanks to them. Their interview with her is wonderful.

What bothers me is that in the print issue of Parents, there is no mention of IBC whatsoever, just breast cancer in the generic sense of the words. If someone is intrigued enough to take their magazine, go to their computer, and to then look up Toddler Planet, then they will learn. They will learn that this isn't an ordinary breast cancer fight. They will learn that there was no lump. No family history. No rhyme or reason to why it has struck this woman.

Guy, my ever present truth bleeder, said that I really shouldn't be surprised. That Parents didn't want to print the complete truth that is IBC right next to the cute picture of the smiling baby wearing the "Save the TaTa's " onesie. It's frightening and their readers don't want to be full of "that could be me" syndrome.

But why couldn't they at least spread the word that there doesn't have to be a lump?

Something else that bothers me is that when I asked Guy why there wasn't more research being done on IBC, he told me I didn't want to hear that answer. I pressed him further. He told me,

"The fatality rate is too high for companies to invest their research funding in."

Well isn't that just perfect? They won't invest because the chance of their success isn't high enough. Women continue to die because no one will do the research. How then, do we change all of that?

That's why I think it is up to us. That's why I think we have to acknowledge that every single solitary day that Whymommy and Imstell continue to survive, they are also offering the hope that maybe we can change the climate. Get someone to believe that IBC is worth investing time, money, and research in.

Get someone to understand that it can be beaten, and that IBC survivors are worth investing time, money, and research in.

We have to do this. We have to change the climate. Make the winds blow funding and determination into finding a sure cure or even better yet, a prevention for IBC.

While I'm up here on my soapbox, I've got one more thing to address.

Whymommy doesn't want for people to stare at her like she is sick. The fact of the matter is though, she looks like someone who is undergoing chemo. And after my visit, I was racked with guilt at the fact that I saw her as a someone who was undergoing chemo. As if I was going to have some magic power to see her with all of her energy and hair right there in front of me.

I cried for a long time after leaving her house. I felt like I had let her down.

What I understand today, finally, is that we see what we see. It is in how we choose to interpret what we see that is important.

So I say this. The next time you see someone who is obviously undergoing chemo, see them for what they are. They aren't a sick person. They are a fighter. They are a survivor.

This is what a survivor looks like:

This is a picture of strength, courage, fight, determination, and survival. One that I totally stole off of her blog, but hey. She should be glad I'm not posting the one I found in my boxes of her getting ready for 10th grade homecoming.

Whymommy, so while I get scared, and I know you do too, I don't see you as sick. I see you as a survivor. I see you as the friend you have always been. With easier hair maintenance.

I don't want the fact that I want to know how you are doing, emotionally, physically, even medically speaking, to diminish the normalcy of our friendship. I'm also going have a slew of parenting questions in January as well. Hell. I just ask a lot of questions. I suppose it could get annoying.

There are those of us who ask, "How are you?" and really want an answer. Whatever answer you feel like giving at the time, but we are asking because we care.

I'm one of those asking because I care.

Upon further reading of my copy of Parents, I do have to add that they listed some IBC symptoms on page 101. While they still never mentioned IBC or that you don't have to have a lump to have breast cancer, they did tell women to go to their doctor if they noticed changes in their breasts. Just saying. You know, to be fair to them and all.

Also, I'm back to being positive, especially for Whymommy. I didn't write this to promote fear or focus on the negative. I just want for IBC to stop being ignored. Bring it out into the light.