LBBC is beginning a campaign to remind people not to forget those of us who are living with metastatic cancer and are spending some time this week teaching people about mets. They specifically asked me to write a post about using writing as a form of healing. And of course, what I learned is that writing is only part of the healing, it is the community you get from writing that does the actually healing.
When I first began this blog, nearly 7 years ago, I had no lofty goals other than documenting this weird part of my life, which I was sure would last a year and then be a memory. I didn't dream of fame, or changing the world of cancer, or being somebody that people looked to in hope; in fact, I never thought anybody who wasn't related to me would read this. My sole purpose was to keep my family off my back. Like all newbies to cancer, I pictured myself spending the next four months lying in a darkened room, sick, puking and most importantly, sleeping. I imagined concerned family members calling me mid-barf or worse, mid-dream to ask how I was, and me repeating the same thing over and over, "I'm fine. No really, I'm good."
My brain said, "No. Hell no."
Of course, realistically, they needed to know what was going on with me, so I decided to share how I was doing and put it in one accessible place. The doctor said, "I'm sorry to tell you, but I'm pretty certain you have cancer." and my first thought was "a blog!" THIS blog. I'd blogged before, and even gotten into trouble for it, and had been looking for new material. Cancer, what luck, the perfect subject. I wanted a "no excuses" place with an easy to remember name, where anybody could find it when they wanted to check in. I also decided, quite deliberately, that I would write it humorously; first, so nobody would worry and second, so that anybody who wanted to call would rather read here and get a laugh then dial the phone and hear my grouchy voice.
That was a bad idea, by the way, just in case you feel like you want to walk my path. People called anyway, even if just to tell me they liked me most recent post. Fortunately, as it turned out, my cancer imagination was worse than reality. Back in those early days of my first chemos, I was healthy enough to talk on the phone and certainly happy to. I didn't sleep or puke as I thought I would; in fact, I felt pretty normal. I felt bald, is how I felt, which is a lot different from feeling sick, which is how I feel now, even with all my glorious hair.
You can go back and read the beginning and see if I'm remembering right.
I did not puke until sometime around year 4, when Gemzar got me. I had no idea that when I started writing, of course, I'd still be blogging about cancer years later, or for that matter, that I would be doing chemo for the rest of my life. Yet the words "Metastatic" became part of my world about 5 months after treatment ended. By the time of my first puke, my parents had both died, my brother had stopped talking to me, I was no longer working, and many people in my real life had forgotten I was even sick and many had disappeared. But I'd picked up a following online who guided me through all my challenges, from c-diff to gamma knife to even the many boring healthy periods. I don't think the value in having people know what you have gone through - or even just being willing to listen - can be overstated. That impulse to write the blog was truly one of the best things that came out of the diagnosis.
People stuck with me and this blog, even though some of the humor had left my spirit and the tone of this blog changed to become more introspective. That is inevitable when you are coming to terms with your mortality. I still get some humor in now and then, but after 7 years, I find that everything is repetitive. How often can you write about the same thing and keep it fresh? Another PET? My 40th? Another chemo infusion? My 300th? It's impossible. Chemo, unimaginable to me 7 years ago, has just become routine, like getting my hair blown out. I have periods of intense pain and illness, and even more periods of seeming health. I find it hard to write about both - I don't want to turn this blog into a litany of "what hurts today" and I also don't want it full of trivialities.
The blogosphere has changed since I began, as is the nature of the internet. People have less interest in reading now, and are more interested in shorter pieces of information or video. I migrated over to facebook early, which was one of the best things I've done. Now, I have a page where I can give out information not "worthy" of this blog (not meaning it's any less important, just that I can't think of a thousand words to go with it). The blog and facebook (and twitter, to a lesser extent) are complementary, each having their own place. I use Instagram to document my life visually, which mostly shows how little I do. Head on over if you want to see a hundred pictures of my dog sleeping. However, with these tools, I am able to stay in touch with anybody who wants to know about me; whether it is how I feel about a certain issue in the World of Cancer to what my kids have been up to. And there is give and take, which seems a little easier on facebook than on a blog.
Blogging is for writers. Facebook is for communicators. Both are for friends, of which I've made many.
Some consider me an advocate for metastatic cancer patients, which is why LBBC asked me to write this, I suppose. I don't put that name on myself. Yes, I am very committed to the idea that awareness is an anachronism, and we must move forward from that idea. I think the article I wrote 2 years ago about moving on from awareness to research still is powerful and necessary and should be shared through October.
I've lived that truth. I could be a wealthy woman now if I took money and products from all the awareness groups that asked to use my space to get their word out, but I decided early on, before I really understood the implications, that wasn't the route I was going, and I would have to truly believe in it as a helpful product for cancer patients before I'd mention it.
And, as I have gotten deeper into the world of metastatic cancer, as I have learned more about how cancer behaves, I'm more sure than ever that the concept of awareness has been a huge error in focus, and I sit in despair that it will ever be corrected. I sometimes think - what if we had gotten it right 30 years ago, and we had understood that finding cancer early didn't cure it, and instead, put all that money collected in the name of awareness into research instead? Where would we be now? Still, I don't dwell. I have hope that in spite of the assault of Pink October, we will still make progress in moving towards a cure for metastatic breast cancer. One of those charities trying to change focus is LBBC (Living Beyond Breast Cancer.) Despite their unfortunate name and residual awareness focus, they are very actively reaching out to the metastatic cancer advocates and listening, which is a good thing. I am still conflicted by them but at least they are trying, unlike Komen, who does not reach out to metsters at all.
My continued survival is proof that we are on the right track. So as an advocate goes, I've said my piece, and I stick to my convictions, but I let the words I've said stand for themselves and move on. Life, as I have learned, is too short to get angry. As I said before, I don't really care for repetition.
Don't laugh, but I see myself as more of a beacon of hope for those newly diagnosed with mets. When I first heard the words, "your cancer has spread to your liver" living five years seemed impossible, and I was sure I'd be gone by now. I mean, I was absolutely certain I would be gone. And I'd been sick enough at times for that to be true, but the body has an amazing power within it, Instead, life stretches before me as it always has, with some faltering along the way. Even with my last metastatic relapse, which sent cancer through my abdomen and spotting into my lungs, I felt hope and sure enough, three months later I was in full remission again. I'm on my 8th or 9th chemo, I honestly can no longer remember - but even being "heavily pretreated" (in cancer-speak, that means you have less chance of next treatment being successful) it worked well.
I get letters and contacts from women newly diagnosed and the one question they have is "how do you manage." I tell them to the best of my ability how to survive mentally. I feel that my main purpose is to give people hope that they will be like me, that they can be like me. I was just past 50 when diagnosed, with a 12 year old who still needed raising. Now I'm 58, that kid is in college, and I really think I could live another 12 years and die at a respectable age. I think a lot of us can do that now. (I'm not saying that 70 isn't too young to die, because where I stand now, it certainly is. I have a good friend who is 72, looks 52, and is a world traveler, with her last trip to Africa behind her and her next trip planned to Patagonia. But after living with cancer for a decade or more, your perspective changes.)
Aside from being a "not dead yet" role model, I also feel like I get to be a teacher. I want people to question what they hear, especially in the world of cancer. I raised a kid smart enough to go to Caltech, after all, that should give me some science cred. Numbers are twisted, on all sides of the equations. People don't understand statistics, and so I have explained: The 1-8 number is misused. The 30% will get mets is not accurate, we don't in fact know that number; it's not tracked that way. I've explained what loss of appetite from advance cancer is really like, helping many learn not to force their sick loved one to eat. So I can use this blog to teach people to be skeptical, especially when marketing and big money is involved.
Helping others has been motivating, but writing has been a form of healing for me, more than I ever would have guessed. The blogger community has been amazing and supportive and comforting but the larger ePatient community moreso, those on twitter, those on facebook, those on YouTube even and those living with different diseases who have shared with me too. I believe without the readers and followers I have, I may not be as healthy as I am now. The women who read and find hope through my story, also give me hope. They give me the ability to relive what I've been through and to say, "If I can do this hard and terrifying thing, you can too." When it turned out my body would not be healed, I discovered my spirit could be - by you who read me and comment. Thank you.
Barring unforeseen circumstances, I will be writing this month of October. I will be posting things on facebook too, so please like my page there and join up. If you don't understand why many metastatic cancer patients do not find comfort in pink October, instead we find it angering, like my page and wait for October. I think you'll soon understand.
Pain and Frustration
1 week ago