Wednesday, March 13, 2013

Is It Just Semantics?

Lives come in every shape and color and that's
what makes them beautiful. 
I was talking with someone in the grocery store parking lot that I’ve never met, but who knew of my nearly four years of living with cancer, and said he admired me because I keep going. He told me that his brother “gave up.” The comment really irked me. Gave up? What does that even mean? Who are we to judge other’s decisions on what treatments they do or do not want to pursue? Or how they react to their diagnosis and choose to manage their own, very personal body and disease?

We all have the right to set up what is a desirable way to live our lives in the way that works best for us – with or without disease – as long as it is respectful of those among us. Our life choices should not be dictated by societal pressures or judged by anyone – even ourselves. We cancer patients have enough pressure: don’t put us on pedestals or act like we’re your project to “fix.” We’re just regular people doing what we have to do to get through the tough times and relish the good ones. Let us choose our own path to follow. Sure, guidance and love and support are so much appreciated, but judgment, unsolicited questioning and force are not.

Just because you have an aunt that survived breast cancer seemingly effortlessly does not mean that the road will necessarily be as easy for your colleague, so don’t equate their journeys. Just because your college roommate died of multiple myeloma doesn’t mean that others won’t live a long life of remission. It’s just not that cut and dry.

Cancer is such a broad, general term. What works for one cancer patient may be detrimental to another living with the disease. We rely on our own understandings and experiences in an attempt to relate, but it’s important to keep in mind that everyone’s journey is uniquely different. According to the Cancer Research Institute, “cancer” refers to the more than 200 different diseases characterized by the uncontrolled growth of cells that invade and damage the body’s normal tissues.

As specific as Hodgkin Lymphoma – the blood cancer of the immune system that I live with – might sound, there are two World Health Organization recognized subtypes. Under the “classic” subtype, there are four more sub-sub types. Then, treatment and disease behavior is dependent on what stage (I, II, III, IV, a or b) you were diagnosed at, whether your tumors are positive for certain proteins like CD30, CD20, or whether they show positive for the EBV (mono) virus and a slew of other factors. Never mind the uncategorizable mutations and the unknown reasons why some strains of Hodgkin Lymphoma are wildly aggressive and refractory, while many are forever cured with frontline treatment.

This is why the science of cancer treatment is moving toward individualized medicine based on specific expressions at the cellular and genetic level. Take two people the same age, the same disease diagnosis, the same treatment plans, and the side effects and outcomes will inevitably be very different. I know this because I see it all the time as I meet others with my same diagnosis but very different treatment and disease behavior paths.

Just because one person supposedly cured their cancer by eating Echinacea root doesn’t mean it will happen for others. And that is not any of our faults. It’s wonderful when people find their cures and can certainly be frustrating when others can’t, but knowing that everyone’s experience is different keeps that glimmer of hope shining that the perfect treatment – or “key” as my husband coined – is out there for everyone. It just takes some experimenting.

Let’s eliminate the assumptions that because someone’s disease isn’t responsive to treatment or keeps coming back after glimpses of remissions means that they are doing something wrong. That is simply not the case and it is detrimental for outsiders to think that, and even more so for patients themselves to beat themselves up over it. Sometimes it is an organic process that we just have no damn control over. We can do our best to complement the treatments in myriad ways by finding a healthy life plan that works for us, but must remember that the existence of cancer in our bodies doesn’t mean a failure on our part.

A countless amount of strangers have said the oddest things to me when they find out that I have cancer. Did you change your diet? Are you religious? As if I must be a fast-food eating, God-hating heathen to be carrying around this disease. What an awful assumption to make about someone. I’m not sure why finding out I have a disease can make people feel they have open reign to tell me how and why I got this way before they even ask my name.

Yes, I live a healthy lifestyle, but you know what? Sometimes I go a whole month without juicing vegetables up for a green juice, and every once in a while I do enjoy a Classic Coca-Cola. Its bubbles make me smile. Is that what is preventing my cancer from disappearing? I don’t think so. I do my absolute best to avoid the foods that are known to give cancer and gorge on the ones that are supposed to kill it, but I am not so strict that if I see a melty chocolate chip cookie fresh out of a bakery oven that I’m going to deny myself that. I’m going to eat the fucking cookie and I’m going to enjoy it because life is too short. If I’m too tired to go to yoga class, I’m not going to go. If someone wants to gasp at that choice then so be it. Power to those who are very strict with their eating and exercising habits. If it works for them then that is fantastic, but again, we all take our individual paths and no one should judge what helps someone else heal.

No, I don’t subscribe to organized religion. I find spirituality and faith in nature, within myself, and everything around me. Is that why I’ve been stricken? Because I haven’t regularly attended Catholic mass since middle school? If I just say my prescriptive prayers and sit in a pew every Sunday then I’ll be cured once I find their God? I’m not buying it and I don’t appreciate the raised eyebrows. I think those with deep faith and devotion to their religion is a beautiful thing. I respect and appreciate it and love that people find solace and strength in their faith. They should be allowed to practice that without judgment just like I should not be judged for finding my strength by digging my toes into beach sand or understanding my place in the world by taking in the majesty of a sunset. There is no need to force beliefs on another – and never a cause to blame a disease on what faith someone subscribes to.

For the most part, people have good intentions. I know this. They just want to be able to wrap something as messy and ugly as cancer in a pretty polka dotted box and tie it in a bright pink bow, put it away and be done with it. Take a pill. Say your prayers. Drink your milk. Pouf you will be cured. What’s your problem? The swift assumptions of false simplicity can really be exhausting.

While we’re at it, let’s give up the terminology that people who die from this disease (7.6 million people worldwide, every year, according to the Centers for Disease Control and Prevention) have “lost their battle with cancer.” When it’s referred to like this, it implies that cancer is the winner and the person is the loser. There are no winners and losers in this. People die from car crashes and overdoses, heart attacks and skiing accidents and we don’t refer to them as losing their battle with their opponent. It implies that the person did not do enough, that somehow they weren’t strong enough or smart enough to outlast and outwit the cancer and I’d venture to say that that is not the case. It’s disrespectful.

Maybe it’s just semantics, but we should be more sensitive to how we speak about and to those dancing with cancer between life and death. If you want to learn more about what it’s like to be a cancer patient or how to be a better support to a loved one who is, leave the stereotypes and the judgments aside and just listen. Be tactful and respectful and consider the time and place and I’ll want to listen to your ideas and experiences, too. Be receptive of the vibes you’re getting back. I didn’t want to hear ideas at 1am when a nurse brought me to tears in confusion over my IV medication and when she caught me crying, asked me if I was religious. Unsatisfied with my answer that I am a spiritual person, she started in on how I need to rely on God to get me out of this. I was incredibly sleep-deprived and needed an Ambien, not a preacher at that moment.

I am not saying that we shouldn’t share with each other our stories and tactics, songs, books, foods, places that have helped us heal. I certainly know that I would not have gotten this far without the outpouring of suggestions about things like anti-inflammatory foods, yoga, juicing, clinical trials, cutting-edge drugs, Reiki, talk therapy, meditation, doctors, and countless other coping mechanisms that are now integral parts of my life. I am grateful to the people who are tactful enough to reach out and make these suggestions to me not in a way that is know-it-all, brash, or judgmental, but in a manner that is comfortable and appropriate. 

Let’s turn up the love and respect and turn down the need to pounce with our own solutions to problems that may not even exist. The choices someone makes may be drastically different from how you’d approach a situation, but there is no one right way. Aren’t we all just looking to survive and thrive in this wild and beautiful life?  Let’s lay off and give each other the space and freedom to do that in whatever way we need to, minus all the pressure and expectations.


  1. Ha ha ha.GAVE UP! I'm sorry.That's just wrong. When one thinks of the terrible side effects that can (and often do) occur with treatment, how can one fault for someone for just choosing to go a different route? Maybe for someone, a shorter quality of life IS better than a longer quantity but with stress and strain and scanxiety..How can we fault someone for anything they choose? Ugh...Then again, I'm assuming he meant that his brother chose not to pursue treatment..or further treatment...

  2. Beautiful post Karin. It really hits home for me and my present experience with my sister. I'm the primary caregiver for my mom with dementia. Almost every thing you said in this post directly related in some way to what we are going through too. Thank you for writing it so eloquently.

  3. My favorite post of yours - ever! Well said Karin.


  4. Please, it's a "COURAGEOUS" battle against cancer! So those who do not survive, I must surmise, were cowards. Hideous. It's not just semantics. Ever noticed when someone has lung cancer the first questions is "Did she smoke?" Or the first statement is "And he never even smoked, not one cigarette." Terribly judgmental.

  5. Karin, this post and YOU give me strength that I can't even put into words .... Thank you

  6. Boy, am I with you on this Karin! My husband and I were just discussing last night our disappointment that Smilow cancer center has a new TV ad with a sort of flash mob of people with placards saying "Survived lung cancer!" as if it's a matter will power or personal achievement, like "Just graduated from law school!"

    Also, your post made me think about my son--he was 25 when diagnosed with HL--after months of misdiagnosis, he finally drove himself to the ER, unable to breath because, as they finally discovered, a mass was so large it was pressing on his heart and lungs and causing him to have difficulty breathing (and also, like your previous post, he needed to have alarming amount of fluid drained from sac around both his lungs and his heart)

    But when they were doing the intake interview, and he was still so scary sick and they asked him if he had a religion (I was standing out in the hallway, still in shock by the whole thing) he said "Secular humanist." :-)

    --from Virginia (in Hartford)

  7. Could we have this printed in a daily newspaper, said on nightly news. So many need reminders about judging others.
    You are so right on about religion, food and lifestyle. As a volunteer for Hospice I can speak on this from experience.
    I do not care how many antioxidants, super foods and such you eat or how many people pray over you, for you or how many church services you attend. If you get cancer, die from cancer or survive cancer, your right Karin, it does not mean you did not try hard enough. I've seen many get down in the dumps or stressed out because they were not getting better, their scans came back with more bad news. A person starts to feel abandoned by God, feels they are not good enough. Depression and stress are both bad for the immune system. The God I know is very big. He does not give some cancer and cure others. I just can't buy that. But if it works for another person and gets them through the day who am I to take that hope away. Be it nature, God, The Creator, Higher Power or in ones self. Who are any of us to be so self righteous and take the one thing that is getting a person through their day? Yes, let us all be there for others and meet them where they are at. Not where we think they should be. If a patient is religious and needs to pray, I pray. If a person is at the end and is not sure, we find a common truth to hold on to. We all need comfort in a time of need. Creature comfort and understanding is what is needed. Love is the greatest gift.

  8. Are americans crazy? Talking about religion as a help for cancer. That nurse would have been seen as an absolute nutcase in Sweden. Unbeliavable.


  9. Thanks for all of the feedback, everyone, and for sharing your perspectives and experiences with me. The more we talk about it, hopefully the more aware others will become too. Thanks, as always, for reading!

  10. Thank you. I learn a lot by reading of your journey.

  11. I'm assuming that by "gave up" the person you met meant that his brother chose not to pursue treatment (at some point down the line), and to me that poses an interesting question: Does it take more strength to "give up" than to pursue treatment? Perhaps continually pursuing treatment is actually the easy option, and "giving up" deserves more admiration than it is typically ascribed?

    Personally, as someone like yourself that has had a whole bunch of treatments, knows what various side effects are like, and continues to go through it all, I still can't honestly say which path I think takes more strength or is more deserving of our admiration. If I'm honest, I'd say that both paths have their own unique challenges, so choosing either is not without some difficulty, and consequentally admiring those that cope one way or the other is equally valid.

    I guess that leads me on to the moral/theme of your post, as ultimately we all should respect and support patients with whatever path they choose, and by whatever means they decide to do it, even if we believe we'd take a different approach ourselves. Having said that, an equally important point to keep in mind is that it works both ways, hence as patients we need to appreciate that people (other patients, family, friends, nurses, complete strangers etc) are likely to cope with the situation in different ways, i.e. from their own perspective, so even if such a person says/does something that we personally find irksome, we should keep in mind that it was likely well-intentioned, and it just happens to be that their response is different to that we desired.

  12. Karin, lovely and thoughtful. Thank you for sharing your insights of your journey.

  13. As a long time lurker (friend of a college friend) it was great to see you get pissed in this post! Yes, so many of your posts are beautiful and inspirational, but there's something life affirming about a post that flips the bird to a whole lot of people via the Internet. The scene when Jennifer Aniston's character quits her serving job in the movie Office Space comes to mind.

  14. This is probably one of my favorites that you have posted. Well said!! If you could bottle it up in fewer words and make it a bumper sticker it might reach the World (as long as they remove the blinders). You have a way with words that puts it all into perspective when we all need/have to hear it! Heres to beautiful sunsets and toes in the sand. I adore you!

  15. You rock, you are amazing. This post is brilliant.
    -Sarah B.