“Wait! Before you say that …”

Heather Jose photo.

Heather Jose

As 2014 begins across ReadTheSpirit magazine, writers are helping us rethink our relationships. They are reminding us that compassion and hospitality—core strengths of caregivers—are universal goals. Last week, poet Judith Valente published a very helpful column called “10 Steps Toward Peace” that is right in line with my column today, especially in her advice about stopping to think before we speak. I hope you will help us to continue this discussion. It’s important.

When someone finds out that I had cancer and the next thing they say is, “Let me tell you about …” Many times the story about their relative or friend is fine—but often the story ends with the person dying. How many times has this kind of thing happened to you?

Have you been in my shoes, hearing such a grim story? Or, have you been in the role of the storyteller? You need to know: Such stories are not helpful. More often than not, I walk away from such a story thinking: Why did she tell me that!?!

As I write this column, I’m thinking about a woman who I met at a speaking event who just found out that her cancer has returned. I don’t know her well, but we do interact often on Facebook. My heart hurts for her right now. Not necessarily because of the cancer itself—from what I know, she will get past that—but for the draining emotional struggle of managing her emotions while being bombarded by others.

If you know that you’ve been guilty of rushing to tell such unhelpful stories—I realize that the impulse doesn’t come from ill intent. The stories spill out of us because we don’t stop to think before speaking. And I admit, there is no Emily Post guide to caregiving conversations. So, in the spirit of Judith Valente’s steps toward more peaceful and compassionate living, I’m going to offer my own set of tips. Let’s call this …

“Wait! Before you say that …”

Photo by Pomona, shared for public use via Wikimedia Commons.

Photo by Pomona, shared for public use via Wikimedia Commons.

When you’re visiting someone going through a challenge as tough as a new cancer diagnosis, consider these six tips:

1. Whatever the diagnosis might be, never tell a story about someone who has died of that disorder.

2. Don’t pretend nothing is different. Life has changed dramatically for this person. Think carefully before you speak.

3. You don’t suddenly have the right to ask personal questions that you wouldn’t normally ask—just because of a diagnosis.

4. Unsolicited advice is still unsolicited advice.

5. This is not about you. There is a time and place for nearly everything and this may not be the time for your agenda.

6. Back off. Wait. Listen. Think before you speak or act. The person may need some time to process this major life change. It is overwhelming to keep everyone “in the loop,” so don’t pepper the person with questions and stories. If you must find out what is going on, then track down a friend or family member. Down the road, there may be many important ways you can help.

Do some of these tips sound harsh? I’m sorry, but sometimes I need to point out the obvious because—unless you’ve been the recipient of a well-meaning flood of responses—you may not realize the impact some of the stories and questions can have.

Help us share this conversation

Please, add a comment below about your own experiences or tips. Use the blue-“f” Facebook icon or the envelope-shaped email icon to share this with friends. Or, use the green “print” icon to make a copy of this column and discuss it in your small group. I don’t regard my six tips today as the final word in this discussion. Please, tell us what you think.

Celebrating a Cancerversary: Reflecting on hard-earned wisdom

Heather Jose photo.

Heather Jose

December 17, 1998

This is my 15th Cancerversary. This may be the first time you’ve heard the term. It doesn’t have its own Wikipedia page—yet. Google Trends says the term doesn’t have enough history to track—yet. But lots of cards, buttons, shirts and graphics are showing up online made by people proudly celebrating the anniversaries of their cancer diagnoses.

I’m celebrating by counting my blessings—my hard-earned wisdom about life that I have accumulated over these 15 long years. My husband and I have different feelings about acknowledging the day. Each year, he asks: “Why would you celebrate that? It was the worst day of my life.”

While I agree with that, it feels like too big of an event to just let pass. That day changed everything. I view it more as a day of reflection. I want to think about all of the things I have been able to enjoy since that day, to never forget what it feels like to be without hope, and to move forward with purpose, knowing that days on earth are in no way guaranteed.

Cancerversary graphics and cards online

Many graphics for this observance are popping up online, from cards and buttons to shirts and other mementos.

I have lived with cancer for more than a third of my life now. I am sure I have forgotten many things about how I lived without knowing it. It has given me a different way of evaluating things. Here are some of my reflections. If you’re marking such a date, each year, what are yours? (Please, comment below or share this with friends via Facebook or email or by printing this on paper via the button below.)

MY CANCERVERSARY
REFLECTIONS

I have learned to say no. Now, I think about whether a new task or job is worth the energy and stress it requires—before I tackle the project. I consider the toll it would take on myself and my family and whether or not it will bring joy or fulfillment in some way.

I have realized through the years that almost everyone has a “cancer”—or major burden—in life. This “cancer” may not have come with the warning to “get your affairs in order,” but just the same it was a catalyst to change. Some people heed the warning to change and some don’t. You can’t do it for them.

Sometimes the only way to get through something is to put your head down and do the work required. There isn’t a free pass around going through treatment. It isn’t pleasant at times—but nothing lasts forever.

Every person I have ever met who has had cancer has some level of fear of recurrence. We are the ones who immediately think—”It’s cancer!”—with any ache or pain. This fear can be managed. For me, the anticipation of what could be wrong is far worse than finding out the real source of the ache or pain. I manage the fear of recurrence by staying on top of changes in my body, talking them over with my husband, or going to the doctor when a symptom won’t go away.

There really are seasons in life. Find the good in each of them. When my season was treatment I viewed my life with amazing clarity. Sometimes, my season is a time to provide for my family and I learn to juggle in that season with a sense of real accomplishment. I face different demands, different priorities and different joys in each phase of life. I need to cherish the blessings in each one.

Attitude matters. All of the time. I am not a naturally bubbly person, but I have learned to embrace positivity for the good of my mind and body. I strive to view everything for the good that is in it.

Guilt is counterproductive as a constant companion. For example, one of my goals is to eat food the nourishes my body. However, I don’t always do that. In fact, just last night we had fondue, which is definitely not healthy. I am not going to beat myself up over that choice and do more damage through guilt. Instead I enjoyed it all and I am going to start out healthy today and go forward.

Look for joy. Spend time with people you love. Keep in touch with old friends. One of my friends has decided to connect with me every Thursday in some way. It may be a short text or a long Facebook message. Regardless I have found myself looking forward to it and I have decided to promote this idea myself. Now, I’ve begun a monthly “check in” with another friend because of this.

Do little things that bring you happiness. I have mentioned before that I love to have coffee from a real mug as opposed to a travel mug. It is a small thing, but it makes me happy.

Look for opportunities to connect with those around you; don’t be too busy to do something that would enrich your life. We have a hot tub on our deck and my family loves to use it. I don’t love the 10 steps outside to get in and out of it, but to share that time with the four of us, disconnected from the world and sharing our lives—those 10 chilly steps are worth it! Everytime.

Stay in the moment. We often spend all of our time anticipating something and then forget to enjoy it when it actually happens.

If you haven’t read my book, Every Day We are Killing Cancer, it will take you on my journey through cancer. I would love to share it with you. Have you dealt with cancer? Care to share the date of your Cancerversary and something you have learned in the comments below?

Rodney Curtis: What I wish caregivers knew

Heather Jose photo.

Heather Jose

All of us who know Rodney are thrilled that he has completed his trilogy of books, taking readers through his struggles with both unemployment—in Getting Laid (Off)—and cancer—in A “Cute” Leukemia. Millions face these dire challenges. Rodney shows us how to tackle it all with humor. Today, you can learn a lot more about Rodney’s life and work in an interview with ReadTheSpirit Editor David Crumm. You’ll find that Rodney isn’t just some goofy guy. He knows a whole lot about defeating cancer. So, today, I invited Rodney to write a guest column.

WHAT I WISH CAREGIVERS KNEW

By RODNEY CURTIS

Attitude.

That’s everything, really. The relationship between the person who needs the care and the person who is trying to give it: It all depends on attitude.

When I first learned that I had acute leukemia—and, then, all the way through my long stays in the hospital, losing my hair and eventually a bone-marrow transplant—I heard from people these words: “I can tell you’re going to make it through this. It’s in your attitude.”

And it was.

That's Rodney hugging a friend in the summer of 2010 in the midst of his leukemia.

That’s Rodney in the baseball cap hugging a friend in the summer of 2010 in the midst of his leukemia.

Remember, “attitude” works both ways. First, there is my attitude—my perception of what I was dealing with and how I would relate to the people around me.  I am a true believer that the way you approach this whole experience says a lot about the outcome you can expect on the other end. Heather Jose calls her memoir about becoming a “cancer thriver,” Every Day We Are Killing Cancer. When she was diagnosed, she wrote those words on a little sign and carried that sign with her as a kind of motto, wherever she went.

What we are saying is: You have to approach this with your own passion, your own interests, your own personality behind it. Like Heather carried her sign—I carried my humor. I used a lot of humor, but that’s me: I love humor.

Maybe your thing is music—so you carry your music with you, wherever you go. I met a guy who decided his weeks in the hospital were his job and his hospital room was his office. Every day, his work—his job—was to get better. He thought of the nurses coming in for various reasons as co-workers coming into his office to help him do his job.

Second, the attitude of your caregivers is just as important as your own attitude. Get them on board with you. Because I loved humor, my caregivers loved to play along. I remember one day, the phone in my hospital room rang and it was a nurse, who was somewhere else at that time, laughing and saying: “Rodney Curtis! Turn on channel 7—STAT!” There was something funny on the TV that she wanted me to see. Because they knew my attitude, caregivers could become a part of that, too.

You’ve got to be honest and open.

If you suddenly find yourself needing help—let’s say you’ve just heard the diagnosis: “Cancer.” Well, I can tell you: It’s a mistake to step back from your friends and all the people who love you, if you can possibly avoid that. The best attitude includes reaching out to all the people around you. Use your connections. Use your social media. I mean, just think of all the tools and software and devices we have today to keep in touch! It’s brilliant.

And, in the first experiences you have in the role as a caregiver, you should be reaching out, too. Don’t be shy. Don’t pussy-foot around. Ask questions.

Here’s what happens all too often when someone is diagnosed with cancer: People hold back and are afraid to ask questions. They’re thinking: Ohhhh, Rodney’s got cancer. I shouldn’t ask him about it! But I’ll tell you: I’m sure that people imagine far more horrible things, if they don’t ask and don’t talk honestly with you—than anything I could tell them.

Then, if you want to help—step up and suggest something. Get specific. I know that people have different responses to this issue. From my own experience, I think it’s best when people who want to be good caregivers come up with real things they can do—and then offer to do these things, specifically.

Here’s an example: You can go up to a friend who needs help and you can say: “Hey, if there’s anything you need, just let me know.” And, yeah, that’s an OK expression of concern.

But I think it’s far better to say: “Can I make you dinner tomorrow night?” And then, “Is it OK if I make this for dinner?” Or, you could say: “Can I mow your lawn on Saturday?” Or, “Could my buddy and I come over and rake your leaves today?”

By offering specific suggestions, you’re telling the person what level of help you’re offering. You might hear back: “No, I really don’t need that.” Still, it gives that person who needs the help a good chance to say, “I don’t need that—but, I really could use this! How about doing this, instead?”

The real question is: Will we close ourselves off and back away from life and from other people? Will we become the patient in the bed? Will we give up our personalities? Or will we try, as best we can, to remain ourselves—and to help each other get through this.

To me, that’s attitude.

TAKE THAT NEXT STEP

VISIT RODNEY CURTIS’S AUTHOR PAGE IN OUR BOOKSTORE: Learn more about Rodney; read sample chapters—and use the easy links in our bookstore to buy copies of his book through Amazon, Barnes & Noble or other retailers. (Yes, you can buy print or e-editions.)

ENJOY RODNEY CURTIS’S LATEST COLUMNS: His department within ReadTheSpirit has been a favorite destination for our readers over many years.

CHECK OUT RODNEY CURTIS’S INTERVIEW: Our ReadTheSpirit Editor David Crumm talks with Rodney about how he learned to laugh in the face of fear.

SHARE RODNEY WITH OTHERS: In addition to buying his books—which we recommend, of course—please share this column with friends by using the blue-“f” Facebook icons or the small envelope-shaped email icons.

(Originally published at readthespirit.com, an online magazine covering religion, spirituality, values and interfaith and cross-cultural issues.)

You know you’re recovering when—you’ve a taste for black humor

This entry is part 2 of 4 in the series Hard-Earned Lessons of a Cancer Thriver
A Note from Heather Jose:
As your host at We Are Caregivers, I’m pleased to welcome back guest columnist Kathy Macdonald. She’s also my aunt and a helper in my own journey through cancer, the story I share in Every Day We are Killing Cancer. Now, Kathy and I share even more: She has joined me in the ranks of cancer thrivers. She is sharing her inspiring story as a cancer thriver in four parts. Click on the headlines in the index box, at right, to enjoy each part.

A Taste for Black Humor

By Kathy Macdonald

Coca Cola in a tall glass

DARK HUMOR? Is this a glass of Coca-Cola or the start of a medical procedure!?! Kidding aside—Coca-Cola has been medically tested to open clogged feeding tubes in a number of scientific trials. Its acidity (just above pH 2.5) is somewhere between lemon and orange juice.

For a month after radiation and chemo, I continued to fail.

Apparently this is pretty normal for throat cancer patients like myself. You continue to “cook” for several weeks hitting your lowest point long after you thought it would be all be behind you. You reach a point when you are desperate for some sign of improvement … and then you begin to slowly improve.

This point coincided with the advent of spring. It was painstakingly slow, but glorious. As part of this process, cancer patients are often given CT or PET scans to confirm the healing process and to confirm that the treatment was successful. Each of these scans if usually followed by a series of visits to your radiologist, oncologists and/or your surgeon. These appointments are anticipated with both hope and dread. You desperately want reassurance that all is well.

In one recent post-scan visit, I was ushered into an exam room by a perky medical technician. She took my vitals and in the process shared how much it meant to her to see post-treatment patients. Her father had also had throat cancer. I asked how long ago this was and she said 3 years, 9 months and 2 days. I commented on her ability to keep such great track of time and she responded that it was easy since that’s how long he lived post-treatment. His cancer had spread to his lungs and then his brain. I was not sure this was what I needed to hear. With growing enthusiasm, she then showed me the necklace she had with his fingerprint and the pink bead on her bracelet that contained his ashes. Needless to say, she had no idea that part of my visit was to discuss a mysterious new spot on my lung.

In the moments alone after her departure and the arrival of the doctor, I decided to relish the humor in the situation. She had no idea of my situation or that I intended to live a whole lot longer than 3 more years. With even more joy, I realized that recognizing the humor was a sign of recovery … and something I could not have done even a month earlier.

Healthcare workers and many caregivers will tell you that it is the black humor that often saves them from the desperate situations they face each day. Without it, the burden would be too great.

Perhaps this is true also of those going through recovery. You know you are getting better when you can recognize the humor of your own situation: losing your hair, using Coke to open a clogged feeding tube, an ER nurse asking you how to access your chest port for an IV, or discovering a waiting groom gracefully decked out with—dead flowers.

I can find humor in all of these and it is wonderful. My body and my spirit are both in recovery. Thanks be to God.

Share this story with friends! Please, start a conversation with your friends by clicking on the blue-”f” Facebook icons connected to this interview. Or email this interview to a friend using the small envelope-shaped icons.

(Originally published at readthespirit.com, an online magazine covering spirituality, religion, interfaith and cross-cultural issues.)

‘I MADE IT!’ Thriving includes memories of bitterness & sweetness

This entry is part 1 of 4 in the series Hard-Earned Lessons of a Cancer Thriver

A Note from Heather Jose: As your host at We Are Caregivers, I couldn’t be happier to introduce you to our guest columnist. First, Kathy Macdonald has a very impressive résumé: She’s the head of The Macdonald Group and an expert in helping individuals and organizations to make faster, less painful and more sustainable changes. But, beyond professional circles, Kathy is one of the most gracious persons I know. I have invited her to write honestly about the challenge of reversing roles and becoming a care receiver—after a startling diagnosis. An expert in change, she suddenly had to transform her own life and hopes to sustain that life, which she is rebuilding once again.

I met Kathy years ago when I married her nephew. However it wasn’t until my own cancer that I began to really get to know her. She and her husband James took excellent care of me whenever I was in Ann Arbor. In fact, you can meet Kathy in my book, Every Day We are Killing Cancer. Kathy has continued to be a mentor and friend to me for many years. Now, we share even more: She has joined me in the ranks of cancer thrivers. Over the next few weeks, she is going to share some of her experiences with you. As always, we would love for you to share her columns and add a comment yourself.

A Case for Remembering

By Kathy Macdonald

TEA and STRAWBERRIES, a photo by Kay Yuen released for public use.

TEA and STRAWBERRIES, a photo by Kay Yuen released for public use.

I took my own advice as an executive coach and began a new journal as soon as I learned my diagnosis of throat cancer.

The news was a surprise. I suppose it is for everyone, but I wasn’t a smoker or a heavy drinker or even male—but I had it. They found the primary source in my left tonsil and I was off to the races with biopsies, then surgery, then radiation and chemo along with a port and a feeding tube through my stomach wall.

Now, half a year later, my PET scan says I am clear of cancer in my throat.

I made it!

As I look back, now, moments return. The evenings when I had to support my head to watch television, losing all my hair in back between my ears from the radiation, my head anchored to the radiation table with what looked like a goal-tender’s mask, trips to the ER for potassium infusions, the inability to even swallow water, and just trying to get through another day.

I am glad I kept a journal and even took a few photos. The worst of it is already slipping away from my daily consciousness. But this is hard-earned knowledge: I now know what it is like for others to go through this and I don’t want all of it disappear like a bad dream.

I remember the morning after my first daughter was born and I realized I was in an exclusive club. I was a mother. I am now in another exclusive club … a cancer thriver. That’s what Heather wants us to call this experience—she talked about it in a recent interview—and her national campaign is making headway. I’m a member of her club, now.

I want to embrace this new membership as I did motherhood. I don’t want to “forget it and move on.” I want to remember the journey. I want to be reminded of what I did go through and how others were there for me.

Every day is a good day now. I have fuzz growing where there was no hair. I just had my stomach tube removed. I can walk up a couple of flights of stairs without pausing. I can eat without fear of gagging.

Life is good.

Remembering when it wasn’t so good will help me keep this focus. I hope this is true in your life as well as in mine.

Share this story with friends! Please, start a conversation with your friends by clicking on the blue-”f” Facebook icons connected to this interview. Or email this interview to a friend using the small envelope-shaped icons.

CONTINUE TO PART 2 IN THIS SERIES

(Originally published at readthespirit.com, an online magazine covering spirituality, religion, interfaith and cross-cultural issues.)

Hello, I’m Heather. Let’s talk about caregiving.

Heather Jose photo

Heather Jose

I‘m excited to meet you as we launch our new home page called WeAreCaregivers.com! Bookmark this page and check back regularly. Every week, I plan to bring you helpful tips, practical news for caregivers and a mix of inspirational columns by myself and other writers. Together, we can find common threads in our lives.

That means you are an important part of this effort, too! I’ll tell you about several ways you can share in a moment. But, first, if you don’t want to miss future news and columns, click on the link (at left) to “Sign up for our Email Newsletter.” Don’t worry: It’s free, comes only once a week and you can cancel at any time—so give it a try for a few weeks. When you click on that link, you’ll be invited to receive the WeAreCaregivers newsletter from me via Email and, if you want, the ReadTheSpirit weekly newsletter and the OurValues newsletter, as well. Get them all—or just our new Caregivers newsletter. It’s your choice.

This new WeAreCaregivers.com is more than our group of writers talking to you. The “We” includes you. Every day, you can help other caregivers, right here on this website, by sharing a photo, a tip or a personal note. All of us need this kind of help. Me, too! As I look around me, I see caregiving everywhere! My mom is a caregiver. She provides assistance both to my dad and to her mother as well. I watch as my aunt juggles her job and the demands of her father. I sit in meetings with families who have children with special needs. And for 14 years now, I have seen caregiving from the perspective of a cancer patient.

This a tough job—caring for others. The hours are long and the reward is often little. But there are bright spots too. Tell us your story. Let’s begin this journey by connecting. Who are you caring for? What helps you? Any advice? Here are several ways to share with us right now …

SHOW US YOUR GODSIGNS SNAPSHOT

Cover of GodsignsGot a photo to share? Here’s why we are asking: Suzy Farbman, a popular writer who you might have seen in magazines or on Oprah, has just published a new inspirational memoir about her successful struggle to recover from cancer. “Godsigns” helped to light her way. No, Suzy isn’t writing about big miracles. She’s describing the many little ways that we can find hopeful glimpses of God even in the midst of our toughest struggles. Sometimes these Godsigns are as universal as the wondrous experience of seeing a star-filled night sky, or a beautiful bird landing on your porch, or the smile of a child. Spot a Godsign in your life? Snap a photo and upload it on our front page (at left). Add a line or two describing your snapshot—then check back with us soon. We regularly will post some of these photos at WeAreCaregivers.com to inspire others. It’s easy—and a good thing to do. Those uplifting little Godsigns helped you—now let them help others.

SHARE YOUR TIPS, IDEAS AND NOTES

Got an idea to share? Another writer contributing to WeAreCaregivers.com is the Rev. Dr. Benjamin Pratt, a pastoral counselor and veteran caregiver. He wrote the practical new book, A Guide for Caregivers: Keeping Your Spirit Healthy When Your Caregiver Duties and Responsibilities Are Dragging You Down. You might have enjoyed Ben’s columns elsewhere on the Internet or you might have heard him on the radio or at a conference. He talks and writes about the spiritual challenges of long-term caregiving. Ben’s most important advice is: Don’t do it alone. And, right here, you can start exchanging ideas with others. Whether you’ve read his book or not, you can start sharing ideas online, right now.

DON’T DO IT ALONE: I’VE LEARNED THAT LESSON MYSELF

Together, we can make this new website a place of refuge, information, and above all community. Every week, you will find other men and women who are just like us in the daily challenge of caring for others. At WeAreCaregivers, we’ve done our research: We know that being a caregiver is a common thing. In fact, 1 of 3 people are taking on the role of caregiving in some capacity right now. However, even though this experience is so widespread—very few people talk about it. That is why we are here.

Each week, I’ll be here to welcome you. Remember my name, Heather Jose, along with the WeAreCaregivers.com home page. You can read my entire story in Every Day We Are Killing Cancer. As you’ll learn in that book, I have spent many years surrounded by caregivers and being cared for myself. Fourteen years ago this December I was told to get my affairs in order as an oncologist reviewed the scans that showed the spread of breast cancer. That was a terrible shock for a 20-something mother of a 1-year-old daughter. Cancer was not on my radar until that day! The title of my book comes from a hand-lettered sign that I carried with me through the long, tough journey to recovery.

SET YOUR GOAL TO ‘THRIVING,’ NOT JUST ‘SURVIVING’

Over the years, I have learned many things about the interaction between caregivers, patients and the medical community. As a longtime columnist for Breast Cancer Wellness Magazine, I’m an advocate of describing the goal we set for ourselves as not just “surviving,” but actually “thriving.” And, we can’t hope to thrive, if we’re alone.

Professionally I am trained as an occupational therapist. I have worked primarily in schools and nursing homes. These settings have opened the doors to caregiving in many ways. If you remember and share only one thing from your visit, today, it’s this: Become an active participant in your own health and don’t tackle these challenges alone. That’s the message that runs through everything I write. It’s what I say when I stand before conferences of health-care providers, caregivers and cancer thrivers across the country. It’s the message that saved my life.

So, you’ve heard a little of my story; you’ve met a couple of my friends who will visit with us in future weeks here at WeAreCaregivers.com. Now, it’s your turn. We’d like to meet you. Got a Godsigns snapshot to share? Get started via the Godsigns links on our home page (at left). Got a tip or idea to share? Take a look at the whole list of ways you can share with other Caregivers right now. And, keep in touch: Don’t forget to sign up for the free weekly newsletter.