Month: August 2015

October Is Coming…but also in a good way!

Posted on by Beth Caldwell

I fucking hate Pinktober. It’s everything that is wrong with breast cancer culture. You can put pink on literally anything in the name of “breast cancer awareness” as though that actually saves any lives, and suddenly you’re not a fracking company, you’re a “corporate citizen.” A huge number of the pink ribbon products that appear EVERYWHERE in October give literally zero dollars to breast cancer causes, even awareness ones, and even less give money to actual research or patient support. For me, it’s like the whole world is rubbing it in my face that I’m going to die and becausehalf the country thinks they’re helping by buying pink shit, when they’re actually not. During Pinktober, I feel frustrated, angry, impotent, and full to the brim with grief, for my life being cut short, for the friends I’ve lost, for the friends I will lose.

But this year, October won’t just be a shitshow of making the rest of the world less frightened of a genuinely deadly disease. No, this year, us metsters aren’t going to just sit by and wish it was different. This year, we’re taking it to DC, and I want you to come with us. Yes you, person who has never had breast cancer, and you, person who had early stage disease and will always have a fear of recurrence in the back of your mind. All. Of. You. 

MET UP, an organization dedicated to saving the lives of people with metastatic breast cancer, is hosting a die-in on the west lawn of the US Capitol building, at 11AM on Tuesday, October 13. We’re hoping to have 1430 people there, from all walks of life, to represent the 1430 people who die every day of metastatic breast cancer around the world. We’ll gather at 11, and at noon we’ll lay down, in honor of the 1430 who will die that die, and read a eulogy to them. 

And then the leaders of our movement will sit down with Congressional staffers and ask them for 3 things. The first thing we want is increased funding for cancer research. The percentage of research proposals that get funded by NIH and other federal agencies has decreased substantially. It’s not that all those ideas that aren’t getting funded are bad ideas. It’s that we don’t have the money to pay for them. Which is why we need more money.  And we don’t want to fight with other types of cancer for money–we want more money for everyone. Treatment for metastatic breast cancer is equally as horrific as it is for metastatic lung cancer, metastatic pancreatic cancer, or any other terminal cancer. We’re all in this shitty situation together and we all need more research to save more lives and to make our lives better.

The second thing we want is for 30% of the breast cancer research funds that Congress appropriates to go to metastatic disease. Currently that figure is 7%, despite metastatic breast cancer accounting for nearly all breast cancer deaths. If we have any chance of changing metastatic breast cancer from a death sentence to a life sentence, and from a life sentence to a curable disease, then we need research dollars to go towards saving the lives of the people who are dying.

The third thing we want is for the National Cancer Institute’s SEER database, which tracks the incidence of cancers, to begin tracking when a patient has a metastatic recurrence. There has been a lot of debate (especially lately) about what percentage of people with early stage breast cancer will develop metastatic disease, and the reason there’s been debate about it is because we literally don’t keep track of that. Adding that datapoint to SEER would give us a picture of just how effective or ineffective early detection is, and would help us to better understand which types of breast cancer are more likely to metastasize. All of this helps with ensuring that researchers can focus their efforts where they’ll save the most lives.

Now, I said before that I want you to come to our event, AND I MEAN IT YOU BETTER BE THERE OR I’LL CRY AND CRY. But if you’re in treatment or otherwise can’t make the trip, then I’m going to suggest that you write to your member of Congress and ask them to support these three legislative goals. If you need a model letter that you can personalize, drop me an email at cultofperfectmotherhood@gmail.com and I’ll send you one. I don’t often ask all of you for help, but I do often hear from you guys asking how you can. This is a way you can make a HUGE difference.

We’re asking everyone who’s planning to attend (my plane tickets are bought SQUEEEEEEEEE!!!) to let us know you’re coming at the link below. Or, if you’re not on Facebook, just shoot me an email or tweet at me or something.

https://www.facebook.com/events/912441292131635/

Special bonus to anyone who’s stalking me: I promise to hug each and every one of you who comes to the event. (Unless you’re like my friend Jo, who isn’t a hugger.)

I don’t know if you can tell, but I’m super excited about this event, so spread the word that we’re taking October back and it’s gonna be AWESOME. I’ll see you all on October 13!

Why I hate pink ribbon culture

Posted on by Beth Caldwell

Did you notice it was some kind of dog-related holiday this week? Susan G. Komen For The Cure did. This is from their Twitter feed.
  

Know what I was doing on that dog day? This.

  
Here’s another one from the Komen twitter feed earlier this year.

  
Round about that time I was looking something like this, on my way to a blood transfusion.

  
Check it, I still I had eyebrows then! Ah, memories.

Here’s the thing, y’all: breast cancer is not some sorority where the treatment is the hazing and once it’s done, it’s all a party with giant bras and fake boobs on dogs. Cancer is a shitshow that leaves lasting scars. One of my closest friends had stage I breast cancer, and she’d be the first to tell you that although chemo and radiation are over, she’s not done with cancer. She lives with the scars and the pills and the emotional damage every day. And for those of us who are stage IV, the hazing of treatment only ends when we die. We never get to join the sorority.

All this pink shit, the bras and the feather boas? They trivialize a deadly disease. They make sport of our deaths. Actually, what they do is erase our deaths. Because if those dogs are what breast cancer is about, where do I fit into the picture, with my one breast? I’m being tortured so I can buy a little extra time with my kids before I leave them motherless. And I WILL leave them motherless, no matter how many dogs get put into bras. No amount of awareness will save my life.

The next time you see one of these things, I’d like you to register your dislike with the organization sharing it. And while you’re at it, demand that they spend more money on research, which is the only thing that will save my life and the lives of the other 150,000 Americans living with metastatic breast cancer.

Crazy Cancer Cures: Curry!

Posted on by Beth Caldwell

You guys! It’s time again for another in my series on Crazy Cancer Cures, where we discuss the many dumb ideas I’ve heard about alternative ways to cure my cancer. Today we’re going to talk about eating curry, or, more specifically, eating curry made with turmeric.

Confession: I’m not a huge fan of Indian food. I’m a white girl who grew up eating white people food, like potato salad and corned beef hash and other things with potatoes and fat in them (mmmmmm potato skins), and we all know I was a horrifically picky eater as a kid. It took me a looooooong time to develop a taste for anything remotely adventurous, and I still haven’t been able to wrap my brain around the incredibly complex flavors of Indian cuisine. I’m trying, because The Hubs loves Indian food, but he’ll tell you it’s still not my fave. He usually gets it when I’m out of town or out with friends.

So, I suppose some may take my dismissal of turmeric as a cure for cancer as proof of my food biases, but let me nip that in the bud: I hereby order you all to eat as much curry as you want. Right now. Go on, I’ll wait here until you’re done.

Back? Good. Now let’s talk about how that meal, though delicious, didn’t prevent you from getting cancer and didn’t cure your cancer if you already have it.

If you google turmeric and cancer, you’ll find a ton of articles claiming turmeric will cure or prevent cancer. Most of them come from natural foods websites, and are based on our old friend, the tiny bit of lab science that doesn’t have a relationship to actual dietary oncology. Cancer Research UK has a good rundown of the evidence, but let me sum up. 

If you put turmeric into cancer cells in a Petri dish, hey look, it slows the cancer’s growth! You know what else does that? Urine. Gonna drink some pee to try to prevent or treat your cancer? I thought not. There was also a mouse study 8 years ago that showed a slow in spread of cancer cells for mice given turmeric. Know how many mouse things work great on mice but not on humans? A fuckton. 

Here’s where the science gets in the way of the health food trend: what the science seems to have shown in human trials is that when you eat turmeric, hardly any of it makes it to your blood stream. So, if your cancer is limited to your gastric tract, then maybe the turmeric is being delivered to your cancer–although we have no studies showing that eating a lot of it will cure you. But to have enough turmeric reach your blood stream to have any hope of it attacking cancer cells anywhere else in your body, I mean, you’d have to just be injecting it like heroin or something. Now, scientists ARE currently experimenting with finding a way to deliver turmeric to your tumor. But “eating a lot of curry” is not one of those ways.

Compounding this turmeric “cure” craziness is that if you want to buy supplements with high levels of turmeric to bypass the scientists and their pesky science in hopes of curing your own cancer, you may run across supplements that contain all kinds of seriously harmful shit in them, because the supplement industry isn’t regulated. And now I quote from Cancer Research UK:

“The Medicines and Healthcare products Regulatory Agency (MHRA) has issued a warning about the turmeric based food supplement Fortodol (also sold as Miradin). Fortodol has been found to contain the strong anti inflammatory drug nimesulide. Nimesulide can cause serious damage to the liver and is not licensed as a medicine in the UK. The Food Standards Agency in the USA states that taking products that contain unknown amounts of nimesulide could be very harmful. Fortodol and Miradin are sold in the UK and on the internet as food supplements. The FSA advises anyone taking these products to stop doing so immediately, and contact their doctor if they have any signs of liver disease. The signs include jaundice, dark urine, nausea, vomiting, unusual tiredness, stomach or abdominal pain, or loss of appetite.”

Look, I get it: we all want a simple solution to our cancer problems, and we figure taking a few supplements can’t hurt. Except when they cause goddamn liver disease. If I wanted to get liver disease, I’d have started drinking a shitload more whiskey, thatnkyouverymuch.

You may also have heard a testimonial or two about how someone cured their cancer with turmeric. I’ve yet to read one that wasn’t on a wackadoodle health food site selling those liver-killing supplements, or that didn’t say “I added turmeric to my chemo regimen and my cancer was cured, yay turmeric!” So, the chemo had nothing to do with it, it was just turmeric? Riiiiigggghhhhhttt.

Is turmeric bad for you? Hell no! If that’s a flavor you like, then by all means, eat it to your heart’s content. Just don’t be surprised when it doesn’t cure your cancer.

Crazy Cancer Cures: The Power of Positive Thinking

Posted on by Beth Caldwell

You guys! It’s time again for another in my series on Crazy Cancer Cures, where we discuss the many dumb ideas I’ve heard about alternative ways to cure my cancer. Today we’re going to talk about the power of positive thinking. 

I can’t tell you how many times I’ve heard people say “Just stay positive, you can beat this!” Uh, no, I can’t. Metastatic breast cancer has no cure. Unless one is discovered, and quickly, I’ll die of my disease. I will not beat it. And no amount of positive thinking about it will change the biology of my tumor. 

Here’s where people get confused: there can be lifestyle benefits to having a positive attitude. Like, if you’re positive, you tend to have less depression, and that’s a positive thing for your lifestyle. Will that mean your cancer won’t kill you? No. It just means you’ll be less depressed while you wait for death.

In addition, there is actually research showing that all the “keep fighting” battle metaphors have a negative impact of the emotional state of cancer patients. So actually, telling people to stay strong and positive can make things worse.

Lots of things make cancer treatment less shitty. Exercise, anti-nausea medications, a healthy diet, pain medications, a hug from a friend. These are all awesome things. But none of these things CURE cancer. Supportive care isn’t a cure. It just makes cancer less shitty–which is a good thing, but not a cure.

List of movies I can’t watch because of The Cancer

Posted on by Beth Caldwell

Terms of Endearment

Stepmom

In the Land of Women

Love Story

Decoding Annie Parker

The Fault in Our Stars

The Family Stone

Dark Victory

Life as a House

American Splendor

Gone Girl

Sisterhood of the Traveling Pants

Forrest Gump

Magnolia

Add any movies that cancer has spoiled for you in the comments.

No, I will not pee in your cup

Posted on by Beth Caldwell

It’s Mets Monday again, and I want to talk about something that impacts young metsters in particular: pregnancy tests. For me, it’s one of the most dehumanizing parts of mester life. Here’s how it played out for me last week.

I developed a cold last week, which doesn’t sound like a huge deal, but when you’re having chemo, spiking a fever means a hospital admission. Ain’t nobody want that, so my oncologist said “No chemo this week, we’ll start the cycle next week instead. How about a PET scan while we wait?” I was like, “Perfect, let’s do it.” We were going to do one after this cycle, but, given the opportunity and a good insurance plan that covers regular scans, bumping it up a month makes sense. My oncologist put in the referral for the scan, and they scheduled it for Thursday morning.

On Wednesday, I got a call from the radiology clinic where the scan would take place, and the scheduler on the phone confirmed the appointment, and asked if I needed her to go over the instructions for prepping for the scan. I told her I’d had several already so I knew what to do–nothing to eat after midnight, last meal low in carbs. She said that’s right, and then said, “And because you’re under 50, we need you to do a pregnancy test up at the hospital before you come for your appointment.”

Now, this isn’t the first time I’ve had to have a pregnancy test before a PET scan. PET scans involve radioactive isotopes and that shit is bad for a fetus. But, since I’ve been in menopause for over a year now from the treatments for my terminal cancer, the last scan they’d said I didn’t need a pregnancy test. Because they used logic. So, I told the scheduler this, and she said, “Well, it’s protocol, but I’ll ask the radiologist if it’s necessary and call you back.” Which she did, with the news that I would have to take the pregnancy test.

I get it, modern medicine: you worry about me suing you if it turns out I was pregnant and the baby has a birth defect. On behalf of the legal profession, I apologize that we’ve driven you to behave in ways that are not even remotely about taking care of your patients, and are solely about covering your butts. Because that’s exactly what you’re doing when you ask a woman who has lost her fertility to cancer treatments to submit to a pregnancy test. That’s not about protecting her, because it’s actually causing her emotional harm.

I didn’t want any additional kids by the time I found out I had cancer–two was my limit, and The Hubs got snipped like five minutes after The Girl was born. But that doesn’t mean it’s not still traumatizing to be menopausal at age 38 from the cancer treatments that are only going to extend, but not save, my life. To then be required to not only be reminded of what cancer has taken from me, but to submit to testing to prove that cancer has indeed taken it from me, in order to get the testing I need to stay alive? That’s incredibly insensitive. Actually, the word I want to use is cruel. It’s cruel to do this to women.

On top of that, there’s the obvious paternalism involved in forcing women to take unnecessary medical tests “for their own protection.” What’s happening in my situation is that this radiology protocol says that I, a woman who hasn’t had a period in 14 months, whose husband has had a vasectomy, and who is actively undergoing chemotherapy, am unable to be trusted when I say “No, there is no chance I’m pregnant.” They know better than us dumb women about our bodies. Just trust us, ladies, we’re only trying to protect you.

Well, fuck you. No, I won’t pee in your cup. I refuse.

I emailed my oncologist and the clinic manager for his office explaining what was going on, and how upset I was about it. I told them that I knew this wasn’t their fault, as the radiology practice isn’t part of the cancer center, but that I hoped they’d pass on my concerns to the radiology practice. He and the clinic manager both wrote back and promised to try to help me out.

A few hours later, after 5PM, I got a phone call from the radiology clinic, this time from a different scheduler. She asked if I’d gotten instructions for tomorrow’s appointment, and I said yes, and she said, “And you know you need a pregnancy test first, right?” This is when I had had enough. Hearing I had to have a pregnancy test for the third time that day was more than I could take. So, I said that I didn’t think I should have to take one given that I’m in menopause and receiving chemotherapy, and my husband has had a vasectomy. She trotted out the “It’s protocol” line and that’s when I snapped. I started crying, and I told her that I think it’s incredibly insensitive to tell a terminally ill woman whose fertility has been taken from her by cancer treatments that she has to take a pregnancy test in order to get the medical tests that guide those treatments.

There was a long pause on the other end of the phone and she apologized, and said they certainly didn’t mean to come off as insensitive. She explained that her supervisor wasn’t there, and she was worried if I didn’t get the test done, that they’d refuse to do my scan when I got there the next day. I explained that the last time I’d been there for a scan, they hadn’t required a pregnancy test, given that I’m in menopause from treatment. And she said, “OK, then, don’t worry about taking the test, I’ll put a note on the file.”

The next day when I got there for the PET scan, nobody at the front desk mentioned the pregnancy test. And in fact, when the nurse brought me back to get me prepped for the scan, she apologized for the whole debacle and said they have some new schedulers who don’t fully understand the rules, and they’ll be doing some training for them. I told her I appreciated that.

Thing is, it shouldn’t take a patient bursting into tears on the phone to make this kind of change happen. And I’m not the only young woman with cancer this has happened to, nor is my story the most horrifying one I’ve ever heard.  One friend told me that after having spent the previous 10 days on the hospital and having several pregnancy tests during the time she was there, she had port surgery. After they started anasthesia for the port surgery, they decided to test her for pregnancy AGAIN. She had to pee in a pan while prone on a bed, half-conscious and in pain from a spine surgery she’d had six days earlier. What in the actual fuck.

I urge doctors to trust their cancer patients, especially those that are terminally ill, to know whether they’re pregnant or not. Making them take a pregnancy to prove it is cruel. Please, stop doing this harm to us.