About Those Cancer Posts

My next post was supposed to be about a couple of cool hikes that I’ve recently done, but I saw something on Facebook that put me over the edge and I need to have my say about it.

Listen, I know that you’d rather me blog about hiking than cancer. And yeah, I’d rather be blogging about hiking than cancer. I’d rather be doing just about anything than talking about and worrying about and reading about cancer, but here I am, about to write yet another post about, you guessed it, CANCER.

Why? Well, let me explain.

Cancer sucks, if you don’t already know that. I hope you don’t. I hope it has never touched your life. If it hasn’t, you’re in the minority. So many people I know have lost mothers, fathers, sisters, brothers, husbands, wives, and children to this beast that nearly took me a year ago. This monster took my sister five years ago. It’s horrible. I have first and second hand experience at cancer.

And guess what? I’m sick of it. I’m especially sick of people who don’t have cancer going on cancer sites and making comments about how “Big Pharma” is withholding a cure, and how CBD oil made their father’s cancer go away forever. Both are major myths, both are words that no one with cancer wants to hear. So stop saying them. I also love the ones about green vegetables and green tea being the answer to everything. Sure, good luck with that. (When your cancer disappears because of iceberg lettuce, let me know, okay?) But none of these examples are what really got under my skin a few days ago. Here’s what did me in: one of those “copy and paste, don’t share” posts that run rampant on Facebook. Now is when I would normally say, “Don’t get me started on that,” but it’s too late, the damage is already done.

First of all, who writes these things? I want that job, and I want to get paid well for it. Because I can write from experience and compose something better, more truthful, and more accurate than whomever is putting this shit out, particularly about the subject at hand. Furthermore, some of my friends that post these things write better than that, but they repost this crap anyway. Not only have I learned things about cancer that I never wanted to know from these stupid posts, but I’ve also been hit in the face about how I need to curb my jealousy when a twenty year old woman with a beautiful body walks by, because I once looked like that, so I need to get over my desire to wring her pretty neck. Only I don’t want to wring the neck of the pretty twenty year old woman because, cancer and all, I don’t want to be anyone but me. I honestly don’t want to be her. Facebook is mistaken, and so is the loser who wrote the viral nonsense.

But, I digress. The “copy and paste, don’t share” post that has me frantically punching the keys of my computer was all about cancer treatment and was meant to honor me as a “warrior,” in my “battle” against chemo and radiation. The offending words remind me that after chemo, I will never be the same again, may never even feel “alive” again. My immune system will be ruined, and so will most of my relationships, because of the damage done by treatment used to “fight the nastation.” (Ooooh, that little red line under “nastation” is telling me that some smarty pants is making up fancy words for Facebook! Don’t get me started on that!) In short, my life is going to suck royally because of cancer, “a very aggressive and destructive enemy of our bodies.” OUR bodies? Is the writer as well as the Facebook user that’s so busy copying and pasting trying to imply that they also have cancer? Because if that’s so, said person better get researching, because he/she/they/ whoever they are, are way off.

First of all, thanks for reminding me that I’m never going to be the same. As if I need anyone telling me that as I struggle to get “me” back after my life was turned upside down. Secondly, before you EVER post such hoo-ha, realize this: the combination of traditional chemo and radiation will eventually become a thing of the past, and in many cases, they already HAVE. Thousands of cancer patients have infusions of immunotherapy or take pills to kill the disease. I didn’t need chemo. And radiation for me was a CHOICE I made because it has made a cure more likely for me. I walked five miles a day daily while I had radiation, not because I was trying to show off or prove something, but because I COULD. I rocked radiation, and I’m sure I’m not the only one.

I know these posts mean well, as do the individuals hitting the handy little “copy” button. But they’re also extremely negative and uninformed. There is enough misinformation out there about cancer. The real truth is that cancer is an individual journey, not a one size fits all. Some people aren’t going to do well, others are going to beat it. I’ve known many of the former. I’m one of the latter. And in response to everyone out there frantically spreading the nonsense and giving advice about green vegetables and CBD oil and lifting the middle finger to “Big Pharma,” I’m intentionally littering this post with photos of me loving life even as I give cancer the boot. Every single picture here was taken after my diagnosis.

Copy and paste THAT.

The New Face of Surviving Cancer

What’s so new about surviving cancer? A ton.

As I travel this road of being a cancer survivor, I’m learning a hell of a lot. Maybe more than I ever learned as I crisscrossed the globe for two decades. Maybe more than I learned my entire life. Absolutely more than I ever wanted to know about this particular subject.

Now, it’s my reality and I’m going to live it. And if I can help others in the process, even better. Every dark cloud has a silver lining, right?

But let’s get back to that new face of surviving cancer.

What’s your perception of someone with the Big C? It’s this, right?

Chemo Two

This may still be reality for some unfortunate enough to get this disease, but not all. What if I told you that every single picture of me in this blog (and most on my website) were taken after my diagnosis, and that my appearance didn’t change at all as I’ve gone through treatment? That there are people wandering around out there in the world, like myself, that have cancer and you don’t even know it unless they tell you? You’d call me a liar, but that’s okay. It gives me a job to do here, changing your perception of what a cancer survivor looks like.

Let me just clear up one more thing.

You’ll see a lot of this stuff out there, too:

Chemo One

I’m going to title this one “Gorgeous Woman Who Has Never Known Cancer in Her Life Telling You That You Can Look as Happy and Fantastic as Her While Your Body and Your Identity Get Depleted By Chemo.” This is called “putting a happy face on a really crappy situation.” It’s misleading advertising at its best and worst. And this is absolutely not what I’m aiming for here. Nor am I suggesting that every chemo patient is ugly, or that any chemo or cancer patient is ugly. I’ve seen people look absolutely stunning in head wraps and/or wigs. Don’t know how they do it. I admire them greatly. In general, I think strength is way more admirable than the Kardashians.

Disclaimer: I was lucky enough to turn my back on chemotherapy, but was less than twenty-four hours away from having it when I was offered cutting edge treatment at a comprehensive cancer center.  I don’t know what chemo is “like” and I don’t plan to. But I do know what it’s like to think that this is the only way to rid my body of this demon called cancer. I was almost there. My lucky stars aligned and I was saved this misery. And this is why I’m so different.

I have lung cancer. And no, it’s not because I smoked, and no it is absolutely, positively not okay to assume that or to ask me about it as if it’s a given fact. That’s an unfortunate way the face of cancer is changing: lung cancer is on the rise in populations in otherwise healthy individuals like me. But that’s for another blog. For this one, let’s get just a bit deeper into two of the reasons that cancer is getting a much needed makeover.

I was diagnosed at a local hospital before I went to Dana-Farber in Boston, which is consistently in the top five cancer research institutes in the entire United States. My local hospital was prepping me for chemo and radiation, but had the good sense to send my biopsy tissue out for what is referred to as biomarker testing, though it may also be referred to otherwise. I can’t even stress how important it is to get this type of testing done if it’s available for your type of cancer. It could be the difference between vastly different treatment scenarios. It could be the difference between life and death, as it was for me. When you settle for chemo and radiation as a first line treatment, that is all you’re ever going to get, and at many small cancer facilities it may be your only option. I know now that if I had not gone to Boston I would not have lived long. Scary stuff.

If you’re fortunate enough to have a biomarker, you may be able to have something called targeted therapy, which is what I’m on. It’s basically a pill that targets the specific mutation in your tumor but usually doesn’t destroy anything else, like white blood cells, which is what chemo is known to do. Targeted therapy drugs often have many less side effects than chemo. It may sound far fetched, but the therapy that I take daily started shrinking visual tumors I had in less than a week and set me on the path of getting my life back. Results vary, (mine was phenomenal) but many people have great responses to these wonder drugs.

The second fairly new treatment is called immunotherapy, which uses your own immune system to attack cancer cells. Like targeted therapy, more cancer survivors are living longer lives with infusions of immunotherapy. Many options are available, and I’ve read several success stories.

It is accurate to say that targeted therapy and immunotherapy are rewriting the script on cancer and putting more people in the survivor column.

Before you accept chemo and radiation, be sure to look into all your treatment options.

And join me as the New Face of Surviving Cancer.

Advocacy, Not Lunacy

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We live in a world where the word “advocacy” gets thrown around a heck of a lot. Me, I use it all the time. Lately, even more. For years, I’ve advocated for my older sister, who is severely disabled, and for my students, who are to varying degrees, also disabled.  Since September, I’ve had to add myself to the list of people I have to advocate for. Being diagnosed with cancer opened up a whole new world of advocacy. In all these forms, I’ve seen some pretty bad examples of what an advocate is and isn’t. Recently, I had the misfortune of being in a meeting for as student in which an advocate made it a point to stand up and yell at me. I was hardly her first victim. Her behavior prompted this blog post.

A couple of days ago I was witness to another poor example of advocacy. Now, I know I’m not supposed to be listening to the medical business of others. But it’s kind of hard not to when the “patient advocate” is getting hot under the collar in the reception area of a world famous comprehensive cancer center. It was all over an appointment with an oncologist that the young lady at the desk was trying unsuccessfully to help him with. Evidently, the patient in question wasn’t on the doctor’s appointment list. Who’s to blame for that? The receptionist? Probably not. But the “patient advocate” started kicking and screaming. “This is Stage IV lung cancer, a life or death situation!” he proclaimed, while the patient and his wife stood by, neither of them looking ready to keel over and die. I’m not making a joke here; I have Stage IV lung cancer, I know it’s no joke. What is a joke is that this “patient advocate” was getting himself in a twist and heightening the moment to a downright lie. Unfortunately, my dealings with advocates have been much the same as this. Furthermore, the “patient advocate” didn’t say anything that the patient himself couldn’t have said. Let’s be real here. Self-advocacy, if possible, is a lot more impressive.

I understand better than anyone that self-advocacy isn’t always possible. My sister is non-verbal, so I have to be her voice. Have I gotten into some tangles on her behalf? Yes, I have. Have I yelled at people? No. Have I lied for her? No. Have I been realistic about getting her what she needs? Yes, I have. And these are the real points of advocacy. Making respectful requests, being honest and open, and most of all, being realistic about what you’re asking for. I have not met too many professional advocates who stick by these rules.

Let’s go back to the student meeting. The advocate showed up wearing a dress with a severely plunging neckline, and bedroom slippers. The mother of the student in question didn’t say a word, but exhibited all sorts of nonverbal responses. Eye rolls and deep sighs were really big. When anyone tried to ask her a question or get an opinion, the advocate in bedroom slippers would cut in and say, “Mom is too upset to talk.” She was so upset, in fact, that she had to play with her cell phone while the advocate raised her voice, tried to make others in the meeting feel stupid, and made unrealistic demands for a student that misses at least half of the school year with questionable medical concerns. This folks, is not advocacy. It’s lunacy. Don’t get caught in this trap.

Here’s reality: not everyone with a serious disease is going to live. Not everyone with a serious disease is going to die. Not everyone with a life-threatening disease is ready to expire at any moment. (Take my word, cancer can be pretty boring at times!) Not every child is going to college. Not every child needs to go to college. Not every person with disabilities is capable of fulfilling lofty goals. Not everyone is going to get what they want out of life just because someone with a big mouth is speaking for them. Being the right kind of advocate is not about having a big mouth and thinking you can yell and accuse people of things they aren’t doing. Thing about it: when was the last time you got what you wanted by getting bent out of shape?

With that thought in mind, if you decide to hire an advocate for any purpose, for yourself or a loved one, remember: make respectful requests, be honest and open about your hoped for outcomes, and most of all, be realistic about what you’re asking for.  Otherwise, be prepared to be disappointed.

And please, please, please, look under the desk. If you see bedroom slippers, run.

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