Posted in cancer, mindset, thoughtfulness

Wishes of a cancer patient

The post that is going around (again) about cancer patients having only one wish—to kick cancer’s butt—is short-sighted and shows a lack of understanding of what cancer patients go through.

Of course cancer patients want to beat cancer and go on to live a healthy life. (There are people with cancer who refuse treatment and accept that it will eventually kill them, but they typically don’t want to live through the awful side effects of the treatment, rather than actually not wanting to go on to live a healthy life.)

To address the rest of this meme…

A cancer patient who has gained 30, 40, 50 or more pounds as a result of treatments probably wishes to be thinner.

One who has become skin and bones as a result of treatments may wish to be bigger.

The countless who are uninsured or underinsured or were fired from their jobs as a result of diagnosis wish for more money. (Heck, who among us is not wishing for more money?) While I was going through chemo, our house had foundation issues. You bet I was wishing for more money. (Or maybe a house without foundation issues.)

A cool car? OK, maybe you got me on that one. Though I’m certain there are plenty of cancer patients who would still love a sweet ride.

Every cancer patient wishes for a day off. A day off from tests, treatments, appointments, surgeries, blood tests, scans, anxiety, fear, looks of pity, inane comments.

A new phone? Depends on what kind of phone you already have, I suppose, regardless of the presence of a tumor.

A single cancer patient still wishes to date the person of their dreams … and fears that with a cancer history (and all of the physical and emotional baggage that comes along with it), it will be impossible. And cancer patients whose spouses leave them because of their cancer wish for the person of their dreams as well.

You know what I hated when I was going through chemo? The assumption that now everything was about cancer. It was as if I had become cancer instead of just acquired it. That nothing else in my life existed for the entire 8 months of treatment (but then that the cancer never existed once treatment was over. Odd juxtaposition.) This meme really supports that notion, which drives me bonky.

How can everything else simply stop existing?

Sure, it’s possible for your priorities to change. Looking at a potential death sentence can do that to you. But you still care about other people (and have wishes for them). You still care about other things in your life. You still want to look nice and pay bills with money left over and play with gadgets. You’re still a person.

Posted in cancer, connections, mental health, physical health, vulnerability

It’s not you, and you can’t fix it

I wrote yesterday about things that people said to me during my cancer journey and in the time since (though one could argue that it’s all the same journey).

I wanted to talk about it a little more.

I don’t think people are intentionally being mean or dismissive or any other unpleasant thing.

I think people are trying to protect themselves, to give order to events where there is none, to relieve themselves of guilt for it not happening to them, to relieve themselves of the discomfort of “what the hell do you say to someone who was just diagnosed with cancer?”

(I can help answer that last one. Will get to that but not going on that tangent yet. Also, all of this applies to all sorts of sudden life unpleasantries, not just a cancer diagnosis.)

Our brains’ mission in life is to keep everything predictable which makes us comfortable. This is why people who are miserable with their lives don’t change—they’re comfortable in their misery. Change is scary, and what if it’s worse on the other side? The demon you know versus the one you don’t kind of situation.

So when we’re handed something that immediately provokes change, we don’t like it. So we resist (consciously or not). And offer platitudes to the person/people who are at ground zero so we can feel better about ourselves and our position in life and shrug off how close it came to being us.

Is there a growing number of people who “need” cancer to learn a lesson, or to grow, or to change? No, I don’t think so.

Are there plenty of people who go through it and come out the other side without having learned any positive lessons, without having grown, without having changed for the better? Yes, there are.

And of course, there are plenty of people who don’t come out the other side.

It’s nearly guaranteed that you’re going to be at the center of a horrible little universe one day. Whether a medical diagnosis, the death of someone close, financial ruin, something, someday is going to knock your legs out from under you and kick you while you’re down.

While I don’t advocate for worrying about it, I also don’t advocate for blowing off other people’s pain to help you ignore the possibility of it showing up at your door.

For another day, you’re not at ground zero. It’s not you.

Is it awkward and uncomfortable to be with someone in that space? Yes. Yes, it is.

Do it anyway.

Your people need you. Step up. Be brave—just by showing up.

You can’t fix the problem.

Once more:

You can’t fix the problem.

You’re not going to say something that magically makes them feel better about their situation. But you can make them feel better for this moment. Be present. Be real.

What do you say? I’m sorry. That sucks. When do you want/need company? What meal can I bring you or your family? (Or, if you already know what would be welcome, What day can I bring you xyz?) When do you need me to watch your kids? Give me your grocery list and let me take care of it for you. Let me come over and vacuum (or dust or clean bathrooms or do laundry) so you don’t have to worry about it. I know it feels weird to get help with things you’re used to doing, but please let me help you so you can take care of you. I can’t kill tumors but I can wash socks and watch kids.

Depending on the person, maybe they’d just like to have conversations about other things. Maybe living with this and talking about it as much as is necessary is enough, and they’d like a bit of time back in normal life. Maybe they’d like to play a game. Cards, or a board game for few players.

Find something to help them pass time when they’re alone. Puzzles, magazines, a subscription (Netflix or similar) if they don’t already have one (even I would have watched TV through chemo). Books if they can read (I love reading but couldn’t get through a paragraph of a book because: chemo brain). A journal and a nice pen. Tools for a skill maybe they’ve been wanting to learn: knitting, crocheting, playing an instrument, drawing, painting, etc.

And then—a few months later, when most people have fallen off (because life events are longer than attention spans)—check in again (if you haven’t been all along). Same offers. New offer. Whatever. And then again.

Any questions?

 

Posted in about me, cancer, know better do better, physical health, thoughtfulness, vulnerability

Cancer is not a gift

12 years ago, I began the process of sorting through symptoms and getting tests done that led to a cancer diagnosis.

In that 12 years, people have said some really stupid and/or hurtful things. (Not intentionally. But still.)

My cancer wasn’t some sort of gift.

It wasn’t given to me so I could learn a lesson or grow in some specific way.

It wasn’t a necessary prerequisite for a path I needed to walk.

It wasn’t a test of strength or character, nor was it a deliberate means to acquire strength or character.

It was a thing that happened, and that’s all.

It sucked.

It sucked way less than many other people’s cancer experiences. It sucked way more than many other people’s cancer experiences.

As a result of that experience, my lenses focus a little differently. I learned things I otherwise might not have. I met people and experienced places I otherwise wouldn’t have.

Many of those side effects have been positive, but certainly not all.

I have no guarantees that I won’t do it all again. Very unlikely for the same cancer. Odds aren’t great for certain other cancers.

In the mean time… today, I am alive.

Today, I take care of my body in a way that ties in with a culture that resists self-care.

Today, I offer support to others who are at the beginning of their terrible journey. Or are at the end of their treatment, still shell-shocked, and wondering, “What now?” as everyone tosses confetti and walks away.

Today, I get to be me for another day. Everything I have lived through—not just cancer—has shaped who I am, for better or for worse.

I have no gratitude for going through nine months of medical testing and procedures to diagnose and treat a large malignant tumor in my chest.

I have much gratitude for some of the “consolation prizes.”

But please. Stop telling people horrible things like “It’s God’s will” or “What doesn’t kill you makes you stronger” or “Everything happens for a reason.”

It’s not a gift.

 

Posted in cancer, education, know better do better, parenting, physical health

If it’s carcinogenic, why is it for sale?

I wrote the other day about how I believe it’s prudent to be mindful about what we purchase, use, eat, drink because of negative health implications. It’s easy to be overwhelmed because there are so many carcinogens (and that says nothing of all of the crap that’s causing other adverse effects.)

So if we know there are problems with all of these things, how are they so widespread?

The short answer has two parts: 1- profits; 2- no oversight.

The FDA has rules about most foods (meat, eggs, dairy are largely under the jurisdiction of the USDA), but not about much else that’s useful to us in a direct-consumer context.

From the cosmetics page of FDA’s website: “Cosmetics are not subject to FDA premarket approval. It is the firm’s responsibility to ensure that its cosmetic products and ingredients are safe and properly labeled, in full compliance with the law.”

If you’re trying to avoid phthalates (like I do), sometimes they’re on labels, but “the regulations do not require the listing of the individual fragrance ingredients; therefore, the consumer will not be able to determine from the ingredient declaration if phthalates are present in a fragrance. Also, because the FPLA does not apply to products used exclusively by professionals–for example, in salons–the requirement for an ingredient declaration does not apply to these products.” (source)

(I do my best avoid everything with general categories as an ingredient, including fragrance, natural or artificial colors, natural or artificial flavors. There are long lists of all of the things that word/phrase can include, and none of those lists is all things I’m comfortable with.)

From the dietary supplements page of FDA’s website: “FDA is not authorized to review dietary supplement products for safety and effectiveness before they are marketed.”

Household cleaners are marginally regulated by the EPA and are required to list ingredients that are potentially harmful or active disinfectants. According to Scientific American:

“The government only requires companies to list ‘chemicals of known concern’ on their labels. The key word here is ‘known’,” she says. “The fact is that the government has no idea whether most of the chemicals used in everyday cleaning products are safe because it doesn’t test them, and it doesn’t require manufacturers to test them either.”

She adds that the EPA, under the terms of 1976’s Toxic Substances Control Act, “can’t require chemical companies to prove the safety of their products unless the agency itself can show that the product poses a health risk—which the EPA does not have the resources to do since, according to one estimate, it receives some two thousand new applications for approval every year.” She cites a recent study by the non-profit Environmental Working Group, which found that the EPA approved most applications within three weeks even though more than half provided no information on toxicity whatsoever.

So basically, companies can use anything not already known as unsafe, whether it’s known to be safe or not.

We’ve already seen how difficult it is to get something that is GRAS (generally regarded as safe) to be taken out of food and other products when they’re shown to be not safe. (see: cigarettes, BPA, glyphosate, flame retardants, and on and on…)

Testing for these things—when it’s done—is typically done in high doses over the short term. So adverse affects are seen in quantities much higher than our consumption. We’re told that this is evidence of their safety.

The problem is, there’s no testing for consistent, long-term, low-dose exposure. There’s no testing for how these things react to each other, or how we react to all of them together.

There is, however, an explosion of cancer, of neurological disorders, of hormonal disruptions. (I need to write about hormones one of these days…) Correlation isn’t causation, but some causation has been shown, but it doesn’t apply to us because the quantities needed for those effects are higher than what we consume… And here we are again.

As far as children’s products go … there are rules, but the rules don’t stop products from hitting the shelves—they just instigate recalls. Which are mostly voluntary. The Consumer Product Safety Commission (CPSC) oversees children’s products, among other things. But here’s the catch: the CPSC starts to look into a potential problem with a product after consumers or companies report issues. The whole chain is reactive.

And so, carcinogenic crap is everywhere. Because there aren’t safeguards in place at a systemic level. Which is why the burden is left on us to know what to look for, to read labels, and so on.

My opinion (if you didn’t already know it) is that it’s flat-out wrong. Getting products on the shelves quickly isn’t more important than consumer safety, in my opinion … but I’m not the one (or one of the ones) in charge.

I could rant for a long time about profits, about conflicts of interest, about lobbying… maybe another day.

 

Posted in cancer, know better do better, mindset, motivation, physical health

Cancer prevention

Four years ago, I wrote a post on Facebook about cancer prevention. It’s full of frustration. Wrapped up with the frustration—though not so evident in the writing—is a solid dollop of “I get it.”

A month ago, I lost a good friend to cancer. In the month since then, I’ve learned about three more diagnoses (that I can think of off the top of my head). I just learned about one of those today, and though I know very few details, it doesn’t sound promising.

And so I am reminded why I spend extra money on organic food, why I strive to eat a healthy, plant-based diet (though I could still do much better), why I clean with baking soda and vinegar, why I make my own personal care products, why I spend the money and the time to use and care for glass and stainless steel over plastic for myself and my son, why I make time to exercise, why I keep sharing information about how bad all this shit is for you in hopes that someone will see it and make a small change followed by another and another.

I don’t want to do it again. I don’t want people I know to do it. I don’t want people I don’t know to do it. The answer is in us, my friends. We don’t need to wait for a cure; we need to take care of ourselves.

And so, on my soapbox I say again, why fund research if we’re not going to use the information the research gives us? Take care of your body, people. It’s the only one you get.

All three of the people referenced in the first paragraph are gone.

Who knows how many more people in the years since then have been diagnosed? (And, on a tangent, are crowdsourcing funding for their treatments?! Disgusting. Not that they’re doing it—that it’s necessary.)

It’s easy to say, “Fuck it. Everything causes cancer.” I get it. Because it’s everywhere. There have been moments when I’ve read about another thing that I hadn’t thought about (I’m looking at you, tea bags!) and felt like it’s all futile.

In a funny-not funny way, giving up is letting the terrorists win. (They’re not actually terrorists, but the sentiment is otherwise accurate.)

If we collectively said, “I’m not heating food in plastic,” there would be fewer plastic containers, dishes, microwave-in-bag, etc. And it would be a little bit less “everywhere” and it would be easier to find affordable alternatives.

If we collectively said, “I won’t use products on my body that have ingredients with known adverse health effects,” there would be more products with less garbage in them. And it would be a little bit less “everywhere” and it would be easier to find affordable alternatives.

And on and on.

Prevention is: “You don’t have cancer.”

Early detection is: “You have cancer but as far as we can tell, you haven’t had it for long. Because human brains want to assign order to this, we feel like it’s all in one place just because it’s new but scientifically, cancer can metastasize immediately or take years. You’ll have surgery and/or chemo and/or radiation. Whichever treatment you get, there are horrible immediate side effects, and potential (and likely) lifelong side effects, some of which are debilitating, and some of which make it more likely that you’ll get a different cancer later. But regardless of any of that, we’ll call it a win as long as the cancer we just found responds and doesn’t return. Oh, and all of this will cost at least tens of thousands of dollars, often hundreds of thousands. You’ll lose friends (because people freak out and run away). Depending on the treatment and your age, you might lose your fertility. [And on and on.] But the good news is, you caught it early!”

Which would you prefer?

(Much of the time, early is better than late, because left to its own devices, cancer will certainly spread eventually. But it doesn’t necessarily need time to do that.)

We don’t have all the answers. We don’t have total control over it. But we have more than we’re often willing to admit.

There’s a laundry list of benefits to taking care of yourself. Is this one motivational? Make ONE change. Stick to it. Own it. When it becomes part of your routine, make another. And on and on.

I did it. I’m still doing it, one change at a time. You can, too. (Sometimes there is regression. Life happens. Regroup and carry on, just like with everything else.)

(Tomorrow’s post continues this thread, but with regards to why we are excessively burdened with these decisions.)