Category: Uncategorized

Why I Do this Blogging Thing

Image(Source: nationofamanda)

This picture kind of sums up why I started blogging. Growing up in a rural area during the 80s, before the interwebs, it was tough to be a goth kid into stuff like the Cure, R.E.M., Husker Du, and that stuff (remember, this is before Nirvana got all over MTV and changed everything—and certainly before you could just download songs to a phone—I mean I had to go to an actual store and try to buy often-unavailable CDs—the horror, the horror). Most of the time I thought no one felt like I did, or had similar thoughts, or anything! I realize most teens feel that, even today, but the internet makes it so much easier to find the like-minded. It does not matter how stupid, silly, weird, or possibly embarrassing a secret thought might be, at least one other person with the same thought can be found via the internet.

Just like this silly picture above. I am a crazy-cat-lady-in-training, (possibly also a crazy-dog-lady too), and yes, the thought “I want all the cats to like me best” crossed my mind ages ago. And whaddya know, someone else had the same thought!

So, as I progressed in my cancer treatment, I began to feel more and more discontent with the “save the ta-tas” style of advice or conversations available to me in real life. Eventually, I found a support group comprised of women who shared some of my discontent. But it was hard to get started in the group….I was too sick and tired with treatment and work to attend much at first. My guess is there are others with a similar outlook who might be relieved to see that someone else in the world thinks the same thoughts. I know I wish I’d found some blogs I now read a bit earlier, it would have saved me some angst!

So this blog is for you, fellow cancer malcontent, where ever you are!

The Age Divisions

When I was first diagnosed a few days before my 39th birthday, I concentrated on just the big picture of breast cancer, and I did not really pay attention to issues of age…at first. I was lucky to be treated at a facility that, despite its location in a small-town and rural area, was evolved enough to have a resource for young adults with cancer. A special support group was started for us by my friend, diagnosed a few years earlier with ovarian and uterine cancer. Joining support groups is so the opposite of my personality, but I am so glad I joined this one. It helped offset the annoyance I still felt going into the infusion room and seeing the looks of surprise given by my fellow patients as they watched me, not my mother, sit in that chair each time (even though I was the bald one, go figure).

As I progressed through treatment and began interacting with the others in our support group, I have researched a few resources outside of our little local circle for “young adults with cancer”. There are some cool things out there, like Huffington Post’s Generation Why blog, Stupid Cancer/I’m Too Young For This! Foundation, and First Descent.

But I wouldn’t be the Cancer Curmudgeon if I did not have a complaint. Generation Why is a play on “generation y”; naturally I am “generation x”. First Descent and events produced by Stupid Cancer are for anyone with cancer ages 13-39. Since I was going through treatment the entire time I was 39, and I worked while in treatment, I did not have much left-over energy or vacation time for anything like that. Hell, even the SCAR Project, which I admire greatly, had a limit of age 35 for participants. So does that mean, since I am 41, I am no longer allowed to be a sexual being, upset at the scar and lack of nipple that cancer left me? I do not think this, but it seems that “society”, or certain organizations, or who knows else, is putting these parameters in place, once again trying to fit cancer experiences into these little boxes.

Cancer sucks no matter what number of years you’ve walked this earth. Maybe people should not be reduced to age brackets when it comes to cancer. At 41 I should be at a certain place in a career, married with 2 kids? Nope, I don’t fit the “profile”. No kids…so the worries of informing my kids, raising kids, and worrying about their future without me does not apply. But I am single and would like to find a husband, and hell yeah, I am worried that my “damaged goods” are going to impact my chances of finding a one, a problem I see discussed in articles targeted to those in their 20s and 30s. In addition, I am certainly nowhere near retirement, in fact, am still searching for my “perfect” job. In short, I know what my particular challenges are, and there may be someone out there in the same or a similar boat, or maybe not. I’m sure lots of patients cannot imagine facing my set of circumstances, the same way I am baffled when I read other bloggers’ posts of trying to go through college while in chemo, some without family support.

Look, I am not poo-pooing these resources I’ve mentioned, I am grateful they exist. I sort it out as I research & read, and just try to take what applies to me and move on. I know that the medical community and these various organizations have to create these age brackets in order to do the testing, compile data, and create their target markets. I especially would like the medical testing industry to expand their vision to include testing and results for each and every age bracket, so treatment can be improved and prevention discovered. It’s all about the stats and the odds, I know.

I just want everyone, especially the number-crunchers, to remember that the one common thread in cancer patients no matter the age is that we all want to survive and live well, and that there is a person behind each number or stat.

Lori's avatarregrounding

 

I’m not sure which surprises me more…

the vile, disgusting, stomach-churning, pull-out-your hair angering “iGoPink” campaign for Breast Cancer Charities of America…

or the fact that this stuff still shocks me.

 

I thought we hit a new low with the 5-Hour Energy Pink Lemonade “jingle.” And in fact, we probably did. But this takes the cake…

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The Reality Blog Award nomination

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Thank you to cancer in my thirties for The Reality Blog Award nomination! It means so much to me to be appreciated for my attempts to tell the tale of my cancer experience exactly how I perceived it, warts and all.

Following the example of Cancer In My Thirties, I nominate the following blogs that constantly motivate me to keep writing my real story:

bcomingfree

lindsaysarahinterrupted

ridingthebcrollercoaster

The Sarcastic Boob 

regrounding

 

My thoughts exactly

Claudia's avatarCancer: What to Do or Say.

another cancer study image credit: Google

Every once in a while I come across a study that makes me want to get together with the researchers. I realize every person is individual, and every cancer is different, too. Perhaps this is what makes me shake my head the most when I read these studies.

This most recent study I read claimed, “Science is finding links between diet and disease. The right combination of foods helps prevent cancers. What to eat and what to avoid.” The head of Harvard School of Public Health states, “Dozens and dozens of studies show that people who are overweight or obese have higher rates of many different cancers. It’s not just one study or two, there’s a massive amount of evidence.”

I used to believe the information about weight and diet more than I do now. I’m tall, thin, and have always been somewhat active and…

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Cool quote

I suspect that cancer doesn’t give a rat’s ass whether you have a positive mental attitude. It just sits in there multiplying away, whether you are admirably stoic or weeping and wailing. The only reason to have a positive mental attitude is that it makes life better. It doesn’t cure cancer.

Who Needs Breasts, Anyway?  by Molly Ivins, 2002, Time  

 

Is Cancer the Worst?

It was a hellish holiday season, waiting on the results of my mom’s ultrasound for the lump in her side, found by her general practitioner.

It turns out she has numerous cysts on her kidneys which may be Polysystic Kidney Disease. The only problem is, PKD is hereditary, and there is no family history of this in our family; never heard of it. But I guess someone has to be first; we still have to see a nephroloogist for confirmation.

I am relieved of course, but annoyed. Her doctor did not alert her of the test results until Dec 26, to set up an appointment a few days later so he could have a face to face with her about this serious issue (and it was only after mom called them, late in the day, at my urging, that the test results were revealed and the appointment made). When we asked him about this timeline during the appointment, he said he wanted to wait until after Christmas so as not to ruin her holiday with the news.

Yes, this PKD sounds awful; I don’t like the idea of dialysis in our futures. But is it worse than cancer? Her doctor knows how much cancer surrounds her. The holiday would have been a tad easier to handle knowing the truth, rather than having that big dark cloud in the shape of a question mark hanging over or heads. Knowing her tests did NOT show cancer would’ve been nice.

Life experiences, not just cancer, taught me to expect the worst. Not just in a Murphy’s Law, if-anything-can-go-wrong-it-will kind of way. I remember the last time I did NOT expect the worst: when I got diagnosed. My aunt had just been diagnosed with breast cancer and I kept thinking, “what are the odds, it cannot possibly be cancer for me too.” Since then I’ve learned to hate the odds; problems might be improbable, but not impossible. Being in that 1 in 233 of women between 30 to 39 to get cancer, AND in that 15 to 20% of breast cancer patients who are HER2+, AND in that 20% of women who get a false negative mammogram (according to only one source, when Googling “false negative mammograms”, the main things that pop up are “false positive”), I just cannot think the odds are ever with me. Breast cancer made this straight white woman a minority—how the hell did that happen?

My reaction of automatic dread, of expecting the worst, is my current defense system. I am working on changing that; I know that my happiness and “who I am” is predicted and defined not by what happens to me but by how I react to it. Working on it, I swear.

But I am considering things that could be worse than cancer, since I seem to have developed carcinophobia. Alzheimer’s? Paralysis? Bipolar Disorder? These all seem horrible and they frighten me. But cancer is my special boogeyman. Better the devil I know???

Still, overall, my feelings on my mother’s news remains: at least it isn’t cancer.

Included: important sites to visit!

Cancer in My Thirties's avatarcancer in my thirties

cancer in my thirties breast 30s bald

I was writing a ‘thank you’ post when I received an email about a petition to ban BPA from our food supply (and a couple of others), so I had to put my other post on the back burner for a minute to pass these petitions along.  If you remember my Please Don’t Eat Anymore Plastic, you know how I feel about issues like these.

If you have a minute, please sign these petitions — you can make your name public or not.  Thanks so much.  If we all do a little, we can make a big change together.

Petition to ban BPA, a carcinogen found in plastics, etc. [“BPA is still used in various food packaging, soup cans, soda cans, and more. With all of the serious health risks BPA presents, why is it still being used in any products at all?  There are perfectly safe alternatives to…

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MRI Music

I remember when I was in my teens watching some cheesy made for TV movie in which the female lead—I guess she had cancer—had to get an MRI.  There is a scene in which her body was shown sliding into the machine with a close up on her face as the MRI noises begin and the actress looked appropriately stressed with each click as the test begins.

Fast forward to 2010, in which I am scheduled to get my first MRI. My aunt had her first one a few months prior, and was so nervous that she was given some anti-anxiety drug before the actual test. In addition, she had ear phones with some mellow music to listen to as she underwent her test. A few others besides my aunt offered me comfort in the days leading up to my first MRI. I was assured I would have music in earphones so I could block out the unpleasant sounds of the MRI.

I’ve had 3 MRIs by now, in a couple different medical facilities, and have not once been offered any kind of music to block out the noise, nor do I need any calming drugs. I think my medical team’s attitude is “don’t make a big deal about it, and the patient won’t notice.” Maybe that would be true if I did not have all these other influences around me.

But no matter. I do not need the audio distraction. You see, as a fan of punk rock, hip-hop, rap, electronic music, and who know what else, the MRI noises do not seem all that strange or threatening to me. I don’t think I realized this until my most recent MRI earlier in the year. I had spent a few weeks listening to nothing but Public Enemy, realizing they sound so wonderfully like the end of the world. The glorious cacophony of PE, and of abrasive industrial bands Ministry and Nine Inch Nails, and countless other bands, adequately prepared me for this particular aspect of the cancer horror show. Better yet, I saw lots of those bands live in the 90s, and it is safe to say that much of my hearing is shot (yes there are limits to how loud music bands can play their music, Ministry always exceeded those limits). So while I lie face down with my breasts in little wells in the table, like some damn cow about to be milked, I do not need to hear that Enya style shit or to imagine some green meadow. That ain’t my happy place. Rather, I get transported back to the summer of 1992, in western Pennsylvania, standing in a crowd of thousands with Ministry screaming “thieves….thieves and liars!” Ah, yes THAT is my happy place, a great memory.

Good to know my wasted youth finally paid off.