Don't Say This to a Cancer Patient

 This post was originally posted in the July 17, 2013 of the The Huffington Post.  By Dan Duffy who is a Filmmaker & Co-founder, The Half Fund.


Eight years ago, I was working for a local video production company assigned with the task of telling the stories of parents who lived through the unimaginable pain of having a baby die in the Neonatal Intensive Care Unit, or NICU, at St. Louis Children's Hospital. What made this such an arduous feat was the fact that both my wife, Stephanie, and my editor, Megan, were pregnant at the time. It was a surreal experience in the editing room every day. Meghan and I would put together a series of shots, and then have to excuse ourselves at various times to cry.

And I have to tell you, it turned me into a raving lunatic at home with my poor wife. "Can I do this? Let me do this! Don't worry about lifting that, I'll get it! Can I get you anything? Do you have any cravings? Would you like a brownie? How's everything feeling down there? Do you need a blanket? Would you like to watch a movie? Would you like me to make a movie for you to watch? Are you out of prenatal vitamins? Do you want me to..."

SLAP

"Okay, never mind then."

I was saying all of the wrong things, and I didn't even realize it. In fact, it took me re-watching an interview we did for the project to finally see the light. We had interviewed this couple who told the harrowing story of how their baby died, and how the only time they were able to hold him without tubes and wires was in the few minutes after he had actually passed. They washed his hair and dressed him for the last time.

I still think of that moment literally every single time I wash either of our boys hair while taking a bath or shower. A few times I've even had to excuse myself right in the middle of lathering them up.
But the next thing that this lady said really shook me to my core: "And then people would say to me 'At least he's not in pain,' or 'At least he's in a better place.' No...a better place is in my arms. There is no 'at least.'"

The last blog I wrote dealt with people who get mad at God during cancer. Well I didn't quite realize the crap-storm that would follow from a fair amount of people. One that really struck me came from a woman who read our blog through the Stupid Cancer Facebook page. In a nutshell, it read something like, "I hate it when people say stuff like 'God doesn't give you a cross more than you can bear.'"
And all of a sudden, "There is no 'at least'" came flooding back. With that in mind, I want to share a few thoughts with those of us who are either friends or loved ones of cancer patients or caregivers.
For starters, we know that you love us, care for us, and want to comfort us, and we love and adore you for it, and are extremely grateful for your compassion and kindness. With that said, we will internally, and sometimes externally, tear you a new anus for saying any of the following platitudes.

1. "This may be hard to hear, but..." Going through cancer, life is beyond hard enough. Unless you've gone through it, it's incredibly hard to empathize with its level of "suck." Don't make it any harder. Which leads directly into...

2. "I can relate." Unless you have gone through chemo, radiation, and a ball (or other part) removal, it is almost impossible to be able to physically relate. Emotionally, maybe. Physically, meh. The odd thing is that people that have gone through this never, ever say "I can relate," or "I know what you're going through," and the reason is simple: if they do relate, story swapping starts. "You lost a breast and part of your jaw? That is awful. I lost my lower leg and now my heel is my knee. And don't get me started on those damn Pet Scans. Catheter, my ass!"

3. "This is part of God's bigger plan." If you want a cancer patient who loves God to start hating God, say this to said cancer patient. If he or she is not mad at God before this sentence is uttered, he or she is pretty pissed off now. "Wait, you think God did this? What a jacksauce!" Oh, and for an ever higher state of anger, as I said earlier:

4. "God doesn't give you a cross you can't bear." It takes hindsight to understand the higher purpose if that is what you are looking for. You don't stand in a burning building or fend off sharks while stranded in the ocean and think, "Well, this is all happening for a reason." You extricate yourself from the situation, and then you reflect...if you're still alive, that is.

And I will say this: at some point during the battle, God-fearing or not, we all have a cross more than we can bear. It's only when we have it that our limits are tested, broken, redefined and rebuilt. Every single one of us have, at some point, given in. I recently talked with an absolute powerhouse named Dr. Sheri Phillips, who is the national spokesperson for the Komen "3 Day Walk for the Cure." She told me about one night while battling breast cancer, she started feeling massive tightness in her chest. Instead of calling an ambulance thinking she was having a heart attack, she went to sleep, thinking "If this is how I'm going out, so be it, because God, I'm just so tired of fighting." And when she woke up, her limits were tested... broken... redefined... and would eventually be rebuilt.

HOWEVER...

To cancer patients and caregivers, you should not get mad when you hear these words coming from anyone: "I'm sorry you're going through this."

Lots of us try to throw those words back at the folks who say it. "Why are you sorry?" The reason people say it is simple: it's the right thing to say. It doesn't matter if it is reactionary. It's what should be said. It's not pity; it's love, affection, concern, or at a minimum...being polite.
 
The argument is "I'm sorry" is used as often as "Please" and "Thank you," and people have said, "They're just throw-away words." Well the next time you find them as "throw-away," have someone refuse to keep a door open for you at the mall, or hand someone a salt-shaker at the table and not receive a "thank you." Or my personal vexation...let someone into your lane, and then have them not wave.

"I'm sorry" is a polite way of saying "I don't know what you're going through because I can't quite relate, but it hurts my heart to know that you're suffering."

"I'm sorry" is good for casual friends, acquaintances, and even strangers. But if you are utterly close to someone battling, there is one sure thing you can say to make them feel even a shred of a whiff of a modicum of better:

"I will be here for you in any way you need, in any way I can."

And that's it. Period. Finito Mussolini.

So now that you know this, it's important for patients and caregivers to not be afraid to gently tell your loved ones where they can stick their platitudes, while also expressing gratitude for the fact that they want to make you feel better, even if for only a second or two. It is up to us to teach them, no matter how hard it might be to say.

Because in the end, by you being the a-hole, you're helping them to not come off like an a-hole. And no one likes being the a-hole...not even the a-hole.

Discover more at www.thehalffund.org


To view original document go to: http://www.huffingtonpost.com/dan-duffy/what-not-to-say-to-a-canc_b_3578732.html

LOVE DOESN'T GET CANCER

This post was originally posted in the December 27, 2012 The Huffington Post.  By Judy Silk.  Judy Silk is a stand up comic, freelance writer and blogger at judemablogma.blogspot.com. A California native, she requires little water.

I'm letting the bad cat out of the bag. My husband has terminal cancer. I don't say that word much, terminal. It sounds defeatist. When the oncologist says there is no cure, or the radiologist says we're just administering palliative care, I try and ignore the offending phrase. But the real truth is there is no cure. The definition of palliative is to treat the symptoms and pain without dealing with the underlying cause. Cancer is a nasty, nasty beast.

But we are living with it. And I mean living with it and ignoring it to some degree. Dan's had chemo for the last year and a half and is now receiving radiation as well. During the chemo years, he would have treatments once every two weeks, and then a break. The chemo week was sometimes pretty bad, but the off week was usually pretty good.

That is where we live: in the good weeks. I was a mess when I first heard his diagnosis: Stage IV recurrence of colon cancer. But a dear friend came and gathered me up, mopped up my tears and took me to see our rabbi. He hugged me until my sobbing subsided, then let me spill out all my fears and sadness. He voiced some pearls of wisdom, some sympathy, and then this. "We're all going to die," he said. "It's never easy. It's never easy when you're staring it down. But, don't go to the funeral today," he said. "Today, you have your husband with you. Today you love each other. Today you can be together. Don't go to the funeral today."

That phrase broke through the heavy curtain of my grief. Don't go to the funeral today. It even let a little sunshine in. He was right. Unlike a sudden death, we have more time to live together. We have each day.

So, I put on the cloak of happy caretaker. I pulled out my Obama campaign shirt from 2008 -- "GOT HOPE?" -- and it became my chemo ward uniform. It also became my mantra. For every day I have hope, I have oxygen. For every day we wake up together, I have joy. For every day we are a couple, I'm singing. I have this man for my husband. I'm beyond words thankful.

All this is not to say we never acknowledge the bum rap. Or that we never realize, separately or together, that we won't live out the sunset years together It doesn't mean that we don't talk to each other about it. But we don't have time to wallow in our plight. We don't need to. Cancer is random. It does no good to be angry. Being angry just takes away another minute, another particle of energy I get to spend with the man I love. People who know our situation wonder at our ability to stay cheerful. It's simple. We're here today. We get to be together, we get to be with the ones we love today, we get to hear music, hike the mountains, and feel the sun or the rain on our faces. Love is simple. Hope is oxygen for the soul.


To view original document go to:http://www.huffingtonpost.com/judy-silk/husband-cancer_b_2365309.html

THE NEW NORMAL: LIFE LIVED WITH CANCER

 

This post was originally posted in the June 5, 2013 The Huffington Post.  By Judy Silk.  Judy Silk is a stand up comic, freelance writer and blogger at judemablogma.blogspot.com. A California native, she requires little water.

I hardly know where to begin. I usually like to be funny in my writing. Or try. But this isn't really funny. Humor plays a part, but it's not the primary emotion or characteristic. I'd say the main elements are cope and hope.

I don't know what I was thinking when I scheduled my husband's colonoscopy for the night before our first anniversary. Instead of a nice romantic dinner overlooking the ocean, we were home, with him drinking a rather wretched cocktail of, well, let's face it, laxatives, while I snuck a tuna sandwich in another room. We toasted to a better celebration for our second anniversary.

The diagnosis was positive. Odd that in this case positive meant something negative; Dan had Stage III colon cancer. It seemed a good anniversary only in that we thought we had caught it in time. He had surgery and six months of chemotherapy. The chemo took a toll, but at the end of it we thought we'd won the war. Turns out it was just the first battle.

For the next year and a half we lived like we had a new lease on life. This is a second marriage for both of us, so we already feel like we hit the jackpot. Conscious of how lucky we are to have a extra chance at romance, we never take each other for granted. We planned vacations, enjoyed barbeques with family, made some home repairs. The usual.

Flash-forward a year to the night before my birthday; Dan had an episode of fainting and a seriously disgruntled stomach, which he hoped was just the Korean BBQ he'd had for lunch. We went in to the ER. They performed an endoscopy that revealed an ulcer in his stomach. I'd have been happy with an ulcer. But the ulcer was most likely caused by a mass, and the mass was most likely a tumor.

I turned 55 at Kaiser, with tears instead of cake. I kept hoping for less news than we got. I wanted it to be a new, different cancer. It wasn't. It was a metastasis of his original colon cancer. I hoped it had just spread to his stomach. It hadn't. It was in the stomach, the abdominal wall, some lymph nodes and his spleen. I hoped the tumors could be removed. Surgery was ruled out. Back to chemo. Finally, I hoped it would be another six month round, maybe a year, as this was Stage IV. The oncologist said what I hoped I'd never hear. There is no cure. He will be on chemo for the rest of his life.

Crying, hugging, fear, panic, sharing and comfort, his fear of dying and letting us down, my fear of living without him, going on alone. It's not the independence I was afraid of, it was the absence of my soul mate.

A good friend came over to sit and hold my hand. She made an appointment for me to see my Rabbi. The Rabbi said, "Don't think too far ahead. He's here now. Enjoy today." As hard as it was to keep my fearful thoughts from racing, I knew he was right. I had a lot to appreciate in my present tense.

Dan and I tried to get back to the day-to-day. He took six months disability to deal with the treatments, to focus on his wellness. One evening we went to a movie, a comedy. We wanted to get our laugh tracks restarted. Sitting in the semi-darkened theater waiting for the movie to begin, I tucked my right arm through his left and rested the right side of my face on his fleece. He kissed the top of my head. My feet were firmly planted on the sticky floor, but my body wasn't grounded. I kept feeling out of sorts. Besides the obvious, I just couldn't get a good breath, I couldn't relax my brain, I couldn't feel normal. Finally I said to my him, "I just want to feel normal again." Dan, my wise and capable man said, "This is the new normal." When he said that, I agreed. But inside, I rebelled. I couldn't imagine this being normal. I kept thinking I wanted things to go back to how they were. I wanted to feel that unaltered bliss, that faith in our planning a future together. But the reality was, death was looming larger than it otherwise might. Of course everyone faces death as inevitable, but not everyone is told at 53 that it is within sight. The truth was, for us, this was the new normal.

In the weeks that followed, Dan started back to chemo. We adjusted to our new schedule with him being home. Our two oldest daughters were enjoying their first year in college; my youngest was in middle school. I found myself drawn to the incredible Cancer Support Community where I could talk with other caregivers and Dan and I could join others in meditation, Tai Chi, writing, counseling and numerous other options. We told some friends, but didn't broadcast it wide.

I think we're unified in coping, hoping and living in the present. We have each other, we have wonderful family and friends, we have some trips planned, we have plans for the future. We laugh, we're quiet, we even still argue. I guess this is the new normal. And while it sucks to have cancer, we have each other, and that's never bad. In that we are always lucky.

To view original document go to: http://www.huffingtonpost.com/judy-silk/life-with-cancer_b_1082971.html