Showing posts with label lymphoma. Show all posts
Showing posts with label lymphoma. Show all posts

Sunday, April 03, 2022

TMW a memoir creates powerful connection between author and reader

When Bald in the Land of Big Hair was originally published by Harper Collins in 2001, I had no reason to expect that this funny little book by a nobody novelist would take on a quietly powerful life of its own. During its first year, BLBH was translated and published around the world, condensed by Reader’s Digest, excerpted in Good Housekeeping, and featured in a special on Oprah’s new TV channel. Later, it was adapted for an off-Broadway touring show, and in 2011, a 10th anniversary edition was published with a lovely forward by Elizabeth Berg. This book put my name on the bestseller lists for the first time, launched a robust public speaking side gig, and opened the door for my unexpected career as a ghostwriter and memoir guru. 

All this was tremendously rewarding, and I’m grateful. An intensely personal memoir takes a lot out of a person; there’s a cost to the author and her family. This book was the realization of the promise in Ecclesiastes: Cast your bread upon the water; in time, it will return a hundredfold. For me, the greatest gift has been 20-plus years of rich correspondence and chance encounters with readers. 

About five years after Bald in the Land of Big Hair was published, I received a long, heart-wrenching email from a Wall Street executive whose daughter, like me, was diagnosed with lymphoma as a young mom. He told me someone had given her an autographed copy of my book. As she struggled through a grueling year of chemo, she’d read it several times and copied bits and quotes from it on Post-it notes that peppered her bathroom mirror, bulletin boards, and refrigerator. 

“She wanted to talk to me about what she was going through,” he said, “but I wanted to keep up that damn stupid positive attitude.”

Frustrated, she’d told him, “If you ever want to know what it was really like, read this book.” 
She always took it with her when she checked into the hospital, so she had it with her when she began losing ground and slipped into an end stage haze. The man pulled his chair close to the bed and read the whole book to his daughter during the long last night of her life. In the morning, he wrote to me: “They say it’ll be another hour or two.” 

He said he felt compelled to email me because he’d missed his opportunity to talk to her about what she was going through, but now he felt as though he’d laughed and cried with her, that he’d shared in her journey, and that on some level, she knew, because she knew he would eventually read this book.

“Thank you,” he said, “for giving me a way to reach her.”

It was one of the most precious moments of my writing life. 

A few years later, I spoke at a large survivorship event and was signing books afterward, doing my best to hug and listen to each person in the long line but feeling very weary after a long day of travel and workshops. A woman came forward with a hardcover first edition copy of BLBH. The binding was broken, the dust jacket tattered and coffee-stained, and leafing through the dogeared pages, I could see that the well-worn book had been passed from that original reader to a sister, to a friend, to a daughter, to a book club mate, to a neighbor, to a chemo buddy—one reader after another—each adding notes and highlights in a kaleidoscope of colored pencils, inks, highlighters, and sticky notes. My story had become a conversation. 

Opening the book to the title page, I saw that I had already signed it back in 2001: To my sister in survivorship—shalom and joy, Joni Rodgers

I thought of the stockbroker’s daughter, how she and I, together, had found the language to get past her father’s stiff upper lip and allow him to let her go. This couldn’t possibly be hers; of course, I knew the vanishingly small odds of that. But in a rush came the realization that this book was one of thousands. There were others, each with its own chorus of voices chiming in with love and support for one another, sharing hopes and fears, creating a sacred space for laughter and tears. They were out there all along; I just didn’t know it. 

Not gonna lie. I cried. Oh, how I wish I could have put that gorgeously dilapidated volume in a shadowbox in my office! But it wasn’t mine to keep. When I wrote this book, I made the choice to share my story, and with that choice comes the understanding that writers have no control over how or where our words will land—which is ample reason to choose those words with care. 
I launched this little paper sailboat into the stream of consciousness more than two decades ago. Readers are the wind and water that carried it around the world, beyond time, and back to me. It was a profound privilege to hold the proof of that in my hands, a far more meaningful metric for “success” than any bestseller list or bank deposit.

Next to the hurried autograph of the my hopeful young author self, I added a brief note from my older, wiser self and sent the book on its way.

It belongs to you now. May it bring you peace.

A refreshed ebook edition of Bald in the Land of Big Hair is now available. The original paperback editions is available wherever books are sold.

Thursday, November 28, 2013

Thanksgiving. Seriously. (19 years ago today, I was diagnosed with #lymphoma)

Nov 28, 1994, I was diagnosed with non-Hodgkin's lymphoma and told I should not expect to live more than 5 years. My kids were 5 and 7. Getting my first book published was still a pipe dream. My husband Gary Rodgers was my life raft.

Nov 28, 2013, I'm still here, my kids are grown and gorgeous, 7 of my first 14 books are NYT bestsellers, and the Gare Bear and I recently celebrated our 30th anniversary. Life is good, and I am profoundly grateful.

Happy Thanksgiving!

Monday, September 16, 2013

Check out the Focus on Lymphoma app from @Lymphoma Research Foundation

#BloodCancerAwarenessMonth Q&A: "Chemo's over! Why do I freak out about follow up scans?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: I've been in remission for several years, and I go once-a-year for scans and follow-up with the oncologist. I used to feel a lot of panic and dread as the six-month check ups approached. Now I feel terrified about going so long between scans. What's wrong with me?

Ashley says: I understand you may be concerned and confused about why going so long between check-ups can feel so scary. Remission is supposed to be this glorious time of relief and calm after the stress of the disease is gone, right? What you are feeling is completely normal—you are anticipating the worst; that the disease is back. Take a deep breath and understand that this fear is within your control. Here are some relaxation techniques to help you prepare for your doctor appointments and cope with the downtime in between:

Deep Breathing. Find a quiet space. Sitting with good upright posture, close your eyes and focus on your breathing. Gently place your hand on your stomach and inhale slowly. Hold the air for a moment then exhale slowly, letting all of the air out. Do this three to five times while focusing on the sound of your breath (Stop if you feel light headed or dizzy).

Yoga/Meditation. Yoga and meditation help connect your mind and body. You can participate in a class or do this on your own. The purpose is to clear your mind and connect your breathing to the movement of your body. With each stretch or pose, your movements are timed with your breath as you inhale and exhale. Focus your attention on breathing smoothly and fully, emptying out your thoughts and emotions, and connecting, rather, with yourself.

Draw the emotion. This is a technique used to help control emotions such as fear or anger. Draw what you believe the fear looks like or could look like on a piece of paper. Put it all out on the page. Then, crumple it up into a tight ball, squeezing it, smashing it down between the palms of your hands. Then begin to tear it up, shred it into little bits and throw it into the trashcan. This gets the image of the emotion out of your head and onto the paper, which you can control. By tearing it apart and throwing it away you visually see yourself discarding the unwanted emotion.

If you need more help to effectively manage the fear you are experiencing you should contact your medical doctor and let he/she know what is going on. Additionally, a mental health professional could assist you in processing this fear and overcoming the underlying issue.

Visit the Mayo Clinic for 10 Relaxation Techniques that Zap Stress Fast.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Thursday, September 12, 2013

#BloodCancerAwarnessMonth Q&A: "What's with all this sex since my hubby's diagnosis?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Since my husband's cancer diagnosis we've been having sex at least once and sometimes two or three times a day. Is there something horribly wrong with us?

Ashley says: First and foremost, there is nothing wrong with the two of you. It is natural for your sex life and patterns of intimacy to change, especially during a major life event like being diagnosed with cancer. Sometimes couples find that their sexual interactions become less frequent and they rely more on emotional comfort and support from one another; others find that sexual activity brings them the strength and comfort they are looking for.

Specifically regarding your situation, is this frequency uncomfortable for you? Often times people will neglect their own feelings or needs in order to take care of the needs of their loved ones. This is a characteristic of the term co-dependency, which can often be considered a dirty word in society but it means that you care about fulfilling others’ needs before your own. It is important to recognize what your needs are and communicate them to your partner. That way you can come together as a couple with what works for you both equally.

As far as how much is too much or too little, right or wrong does not factor in here. What is right is how much is comfortable for you both as a couple. Communicate with each other and share what you need from your partner. Perhaps your magic combination is sex once a day, and lots of hugs and handholding, or maybe the Do Not Disturb sign never comes down. The idea is to have a happy, healthy sex life full of respect and communication.

For more from the American Cancer Society on how your sex life can be affected by cancer.

Joni says: That's such a sensible approach to a topic that can be kind of powder-keggy for a lot of people. Over the years, that part of the book has generated the most response from readers--both love and hate mail! Thanks for the wise words, Ashley.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Wednesday, September 11, 2013

#BloodCancerAwarenessMonth Q&A: Where did all my friends go?

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Since my cancer diagnosis, a lot of my friends and even some of my family members seem to have disappeared. If I happen to bump into someone I know, they're obviously uncomfortable. WTF?

Ashley says: Many people have experienced loved ones pull away during or after treatment. This is typically because they care about you and do not know how to handle the news regarding your diagnosis. Some people avoid situations of conflict or distress believing their concerns would just add to the heavy load they assume you must already be carrying.

Help shorten the distance by beginning to reconnect with them. Communication is key. Here are a few tips on reconnecting:

Start small. Plan to meet for coffee or dinner just to catch up. It does not have to be a serious sit down. Just relax and revisit your relationship with no pressure or expectations. This can be difficult, but is the best way to reconnect and rebuild your relationships.

Express how you feel. Use "I-statements" to share your feelings with your loved ones and what you expect from them. I-statements are structured like this: “I feel ____ when you _____. Instead I would like you to _____.” This puts your feelings out first and allows your friends to be more receptive of what you have to say, as opposed to the reverse, which puts how they affected you first. This can put your loved ones on the defense and furthers the distance in your relationship. Your I-statement could be as simple as, “I feel hurt when you pull away. Instead I would like you to spend time with me and we don’t have to bring up the C-word.”

Take it slow. Give your relationships time to build and strengthen. Savor each step to a closer relationship as a victory. Perhaps your loved one is not ready for dinner and a movie followed by a road trip across the country, but they are up for coffee at the local café next week. Meet them for coffee and work up to the road trip.

There are several ways to start the road to reconnecting, just pick your path. Be encouraged that others have felt the same way you do and with hope and patience have reconnected with their loved ones.

Here's a great article from Mayo Clinic on reconnecting with loved ones after treatment.

Joni says: This is so much healthier than what I did during chemo; I just sort of withdrew like a turtle and tried not to "bother" anyone. That didn't help my friends who really were hurting for me but didn't know what to say. And it certainly didn't help me. I felt horribly isolated and alone. Thanks, Ashley! Great advice.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.


Tuesday, September 10, 2013

#BloodCancerAwarenessMonth Q&A: "How and when do I share my cancer diagnosis with my family?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: At what point am I obligated to share info about my cancer diagnosis with my extended family? 

Ashley says: When it comes to sharing your diagnosis with extended family and others in your social circle, the timing is up to you. Depending on the dynamic you have with each family member or friend, they may notice something is weighing on your mind and they may ask you for the information. Others might not notice and you might be feeling the urge to share in order to connect and gain encouragement. Social support is a great source of encouragement and strength especially when you have been diagnosed with cancer. Research shows that social support improves mental and physical well being. It allows you to learn and utilize more positive coping skills, which eases the level of stress comparatively.

It may be tough trying to start this conversation with your loved ones but here are a few tips on how to approach the topic:

Give your family member(s) a heads up that you want to meet and talk with them. Maybe you want to meet that afternoon, or a few days from now. Asking for the time to talk allows the family member to prepare to set aside the time and to also be aware that you have something you want to share with them. This gives them time to be available to receive what you have to say, rather than being in the middle of picking up kids from school or on a lunch break when they are rushing back to the office, etc.

Start by saying you have something important you want to share with them and let them know what the diagnosis is, and what that means. Sharing what to expect helps provide comfort in knowing. Fear and anxiety more often follow the unknown. Try to provide as much information as you can and if you do not have an answer to a question, tell them you will find out together. 

And finally, be available to answer questions and stay connected with them. Talk about what's working now and what could be better moving forward. Social interaction and support helps combat depression and keeps you going stronger than when you are on your own. If you are looking for more social connections to help you through this, look for a support group in your area. 

For more information, check out this article: The Impact of Social Support on Cancer.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Sunday, September 01, 2013

Wonder Wendy: "You must be radiantly, buoyantly alive!" (Thanks, chemo!) #BloodCancerAwarenessMonth

I'm so in agreement with Vivid Wendy Barrie! Alive is SO much better than non-alive! That's why I'm grateful to all those who stepped up to participate in clinical trials, donate blood and marrow, or dedicate their lives to caregiving in an effort to give life to all of us with blood cancer.

September is Blood Cancer Awareness Month! Visit the Leukemia & Lymphoma Society to learn more about the amazing research and progress toward a cure.

(Click to enlarge image.)

Sunday, September 02, 2012

Gloria Estefan "There's Always Tomorrow"



I heard this song the day I was diagnosed with lymphoma, and it still brings tears to my eyes. Can't begin to express what these words meant to me in that moment and all the years since.

If you're hanging by a thread today, please know that you're not the only one. And there's always tomorrow.

Saturday, September 01, 2012

BALD IN THE LAND OF BIG HAIR to Benefit Blood Cancer Awareness Month





September is Blood Cancer Awareness Month, and I'm doing what I can to spread the word. Please be aware: BLOOD CANCER SUCKS.

This month, Bald in the Land of Big Hair, my memoir about surviving non-Hodgkin's lymphoma when my children were small, is priced at just $2.99, and 100% of the royalties will go to the Lymphoma Research Foundation.

 The hardcover was originally published in 2001 by HarperCollins, so last year, I did a 10th Anniversary Ebook edition with bonus content, including a foreword by Elizabeth Berg.

 Help me raise a good chunk of cash for blood cancer research! If you haven't read it, grab it! If you loved it, gift it! If you hated it, gift it to someone you don't like! Here's a link to the Lymphoma Research Foundation.

Sunday, March 29, 2009

Love is the Answer (Go with God, England Dan.)


Author/musician Jamie Reno sent the following around yesterday after it was reported the musician, mensch, and our fellow lymphomaniac Dan Seals had died:
Hey friends, some sad news to report. Dan Seals was a rare talent, and was very kind to me. He was a big fan of my book on lymphoma survivors, and last time I checked in with him he was optimistic and ready to start his own lymphoma treatment. I was looking forward to recording with him. I’m listening to this classic song of his as I write this, with a tear in my eye. If you owned a radio in the 70s, or 80s, you know Dan Seals. He was a gentle, kind country boy with an inimitably tender voice. I will miss him very much.

Dan Seals partnered with his high school buddy John Ford Coley, who called him "England Dan" because they worshipped the Beatles and Dan adroitly imitated the Liverpool accent. (That was Dan's brother Jim in Seals & Crofts, by the way -- I'm just full of odd little info orts retained from my disc jockey days.) Dan was born in McCamey, Texas and grew up in Dallas. After soft-rockin' the '70s in his stovepipe jeans and mutton chop sideburns, he went on to be a huge country music star and ran for congress. He died at his daughter's home in Nashville.

For more about lymphoma survivors (including yours truly) who made the most of their post-diagnosis bonus years, check out Jamie's book, Hope Begins in the Dark. And for a sentimental blast from the past, chill with John Ford Coley below.
Name your price, a ticket to paradise
I can't stay here anymore
I've looked high and low
I've been from shore to shore to shore
If there's a shortcut, I'd have found it
But there's no easy way around it
Light of the World, shine on me
Love is the answer...