Monthly Archives: August 2014

Leaning Into Gratitude To Cope With a Loved One’s Cancer

This week’s guest blog post is by Russ Terry, author of My Gratitude Journal. In 2013, Russ documented a different person, thing, experience or feeling he was grateful for each day of the year.  In the last few months of his journey, he attended three funerals, yet still found something to be grateful for every day.  More recently, his mother was diagnosed with breast cancer.  Here he explores how he’s been mining gratitude to help him navigate this unwelcome news.

The C word.  Cancer.  No one wants to hear it, especially from an immediate family member.  A few weeks ago, my Mom phoned with startling news:  her annual mammogram had turned up something “highly suspicious for malignancy.” I was stunned, shaken, sad, upset, scared.  You name it and I felt it – such a range of emotions.  I’m not going to lie or sugar coat it.  It’s been a rough few weeks.

On the positive side, however, there’s so much I have been grateful for in this situation.  Oh, let me count the ways:

  1. I’m grateful that she’s gotten her mammogram every year for 30 years and does a self-exam on the first of every month.  (Great advice for all women!)  Even if it did turn out to be cancer, I was optimistic that it was caught early and hopeful that this time next year we could not only go on the vacation to Italy that we’ve been planning, but could use the occasion to celebrate life, health, how much we love each other, and our Italian heritage, of which we’re very proud!
  2. I’m grateful for an incredibly wise and supportive group of colleagues.  Right before this all happened, I came to know not one or two but THREE people who would prove immensely helpful.  Two are breast cancer survivors and one is an expert on grief.  It’s like God planted them in my life to make sure I was OMy Gratitude JournalK.  Wow.
  3. My friends have been excellent.  I’m so grateful for their support, prayers, positive thinking and encouragement.  Thinking about them makes me smile.  So many have passed on good wishes to me, which I have forwarded to my Mom.  She is grateful, too, which makes me even happier to have all of them – and her – in my life.
  4. I’m so glad I have a job that’s flexible and enabled me to be by her side for her pre-lumpectomy consultation with her surgeon.  I’m grateful for the doctor and his calmness, and that my Mom, my sister and my Mom’s significant other could all be there with her.  We even went out to eat afterward, which we otherwise would never have done on a random Wednesday in early August.  It was lovely!
  5. Finally, I’m grateful that we got some very good news within the last few days.  Although Mom does have breast cancer, it has not spread. The surgeon said that he’ll likely be able to get everything out when he does the lumpectomy (on September 11th, please keep us in your prayers), and that she won’t need chemotherapy.  Phew!  What a relief.

When I shared the good news with people who are grappling with more difficult cancer experiences, I felt so guilty.  But they were incredibly happy for me.  I’m grateful
for their generous spirits.

You may get good news.  You may not.  Either way, you can always find something to be grateful for, even in tough situations — and now I know ESPECIALLY in tough situations.

Interesting postscript: I sent this to my Mom for her review before submitting it.  I wanted to make sure she was OK with it.  Here’s what she said: “Even if the diagnosis had been the type that needed chemo and radiation I would still be positive because more and more people are surviving cancer.” So inspiring, right??

For information on Russ, visit his website www.russterrylifecoach.com.

Russ Terry and the Grief Coach who wrote last week’s blog post – Jill Smolowe – are co-hosting an in-person workshop, “The Grief-Gratitude Connection,” to be held in New York City on September 15.  For more info and/or to buy your tickets, go to: http://www.eventbrite.com/e/the-grief-gratitude-connection-strategies-for-easing-the-stress-of-caregiving-and-the-pain-of-loss-tickets-9972777847

russ terry quote

6 Tips for Easing the Stress of Caregiving  

This week’s guest blogger is Jill Smolowe, author of Four Funerals and a Wedding: Resilience in a Time of Grief.

This week’s guest blogger is Jill Smolowe, author of Four Funerals and a Wedding: Resilience in a Time of Grief. She provides tips for easing the stress of caregiving.

This week’s guest blog post is by Jill Smolowe, author of Four Funerals and a Wedding: Resilience in a Time of Grief.  As a caregiver, Jill spent years assisting her husband through treatment for leukemia and her sister for colon cancer. In her work as a grief and transition coach, she partners with clients to help them access the instincts and strengths crucial for maintaining optimism and purpose while caring for an ailing loved one. To learn more, visit www.jillsmolowe.com

  1. Don’t get ahead of yourself. When a cancer diagnosis enters your life, you may find your mind racing. How will my loved one tolerate the treatment? What will the side effects be? Will the regimen work? There are answers to these questions – but they will only become clear as treatment unfolds. Your today has enough challenges; don’t try to grapple with the future, as well. Handle the day’s challenges, and no more. As one oncologist likes to say, “Get on the train and go for the ride.”
  2. Stick to the facts; don’t speculate. The Internet is full of information – some of it useful, some of it ungrounded, much of it needlessly alarming. Your loved one is unique; so is his or her cancer. Ask the medical team questions that help you gain clarity about your loved one’s situation (and write down the answers for future reference). That’s the information that should concern you. What happened to a friend’s aunt? Not useful. Speculative “What Ifs”? Crazy-making.
  3. Deal with other people’s concern on your schedule, not theirs. Are you surrounded by friends and relatives who constantly ask, “How’s your loved one…How are your children coping…how are you?” Though the concern is well-intended, many caregivers find the cacophony (and the endless repetition) more of a burden than a support. If that’s true in your case, turn off the din. Tell people that now is not a good time for you to discuss your loved one’s health. Suggest they instead send you an email. Then respond when the time is right for you – and don’t feel guilty about it. Remember: when they walk away from the conversation, they also walk away from your problems and back into their own lives. Only you are left to grapple with the emotional toll of their questions.
  4. Recharge your batteries. Exercise, sitdown meals and diverting activities may feel selfish – but taking time for yourself is not just for you. Your loved one needs your vitality. If you let your mind dwell exclusively on illness, you risk cutting yourself off from the sorts of interactions that can replenish your energy supply. Love to talk about movies? Walk your dog? Debate politics? Then, do it. When you close all those other windows in your life, you are reduced to a single narrow role: caregiver-of-the-sick-person. That is depleting not only for you, but for the loved one you’re helping.
  5. Address the elephant in the room. When critical illness enters the picture, so does fear. It can be a great relief for both you and your loved one to address the worst-case scenario. That doesn’t mean either of you is anticipating death or throwing in the towel. But let’s face it: all of us are going to die – sometime. Now is a good time to get a handle on what your loved one wants when that (inevitable) time comes. Burial or cremation? Where are the will, the living will, the bank accounts? What are his/her passwords to crucial online accounts? All of us should know the answers these questions. Rather than pretend the person you love is immortal, invite him or her to have the conversation. It may help relieve tension in the here and now ; certainly, it will prove a huge help – sometime – up the road.
  6. Express your love and appreciation. Often. That goes for both caregiver and patient. When a patient acknowledges a caregiver’s efforts, the caregiver is more likely to feel good about giving of herself than resentful about giving up her time. When a caregiver is appreciative of a patient’s efforts to get well, the patient is more likely to accept help without feeling like a burden. Take no effort for granted. Leave no words of love unspoken. If your loved one is not good at expressing his or her gratitude, consider this: s/he could have chosen someone else to lean on; you are the one s/he trusts enough to count on. If that’s not an expression of gratitude, what is?

Next week: Life coach Russ Terry, author of My Gratitude Journal, will explore how to access and put gratitude to work to help offset the exhaustion and rigors of caregiving. To learn about Jill and Russ’s workshop, “The Grief-Gratitude Connection,” to be held in Manhattan on September 15, go to: http://www.eventbrite.com/e/the-grief-gratitude-connection-strategies-for-easing-the-stress-of-caregiving-and-the-pain-of-loss-tickets-9972777847.

Easing the stress of caregiving

MyLifeLine.org Attends National Women’s Survivors Convention

Welcome to Survivorville!  The Women Survivors Alliance (WSA) was created to be the voice of survivorship and to bring recognition of survivorship issues to a public stage. In July, MyLifeLine.org attended the National Women’s Survivors Convention in Nashville. We were privileged to hear honorary co-chairs Bill and Giuliana Rancic share their story of determination and hope when Guiliana was diagnosed with breast cancer.

We attended empowerment sessions that focused on connection, inspiration, reinvention and transformation. Fellow patient advocates Sara Goldberger from Cancer Support Community and Jonny Imerman from Imerman Angels, shared their own cancer survivorship experiences by leading lively, thought-provoking sessions that provided survivors with tools to add to their personal survivor care plan.

As a 5-year breast cancer survivor, it was wonderful to surround myself with hundreds of fellow survivors, in all stages of survivorship, who are all focused on the same thing – learning to survive after a cancer diagnosis.  It was heart-warming to visit with so many other patient advocates who are passionate about helping those affected by cancer.   I was honored to have the opportunity to talk directly with many courageous survivors and share the challenges and triumphs of survivorship.

Tricia, a 5-year breast cancer survivor and MyLifeLine.org team member takes a #Ribboning picture at the National Women's Survivors Convention

Tricia, a 5-year breast cancer survivor and MyLifeLine.org team member, takes a #Ribboning picture at the National Women’s Survivors Convention in Nashville.

Roberta picture

Appearances

This week’s guest blogger is Roberta Aberle, a MyLifeLine.org member. Born in Rapid City, South Dakota, but raised in Fort Collins, Colorado, Roberta Aberle has been surrounded by cancer her entire life. Diagnosed with the rare cancer, Primary Peritoneal Carcinoma Stage IIIC, on Leap Day, 2012; after a total hysterectomy in 2009 was performed to reduce her risk for developing cancer, Roberta has been both a fighter and advocate for rare, sub-types of cancer. “I’d love to see other cancers reach the level of awareness and fundraising that breast cancer has with the Susan G. Komen Foundation,” she says. Roberta has been on multiple treatment regimens since her diagnosis in 2012, with the goal remaining to see some phase of remission. Her treatment has included clinical studies, surgery, intraperitoneal/hyperthermic chemotherapy, but has also incorporated many holistic approaches such as journaling, meditation, aquatics and nutritional strategies. Her primary goal is to not only reach remission but to use her experience to help demystify the cloak around cancer for caregivers by speaking honestly and authentically about the insights gained living the role of a cancer patient.

Appearances do matter. Let’s face it. Whether we like to admit it or not.

My appearance has always mattered to me. But with this disease I’ve been forced to alter that, to allow this illness to take over my appearance. I’ve been fortunate to always have felt comfortable in my skin, but I no longer do.

My skin is bruised and scarred, each day brings a new blemish in some unexpected place. Bruises on the top of my feet, a simple cut on my finger or hand that I have to fear could result in a raging infection, aches and pains so deep no topical or pain medication can even touch it. A body that wants to lie in bed all day.

I don’t want this to be my body. I don’t know this body. My scalp is patchy, rough stubble that feels completely unnatural. A masculine trait, not even remotely ladylike. I can’t run my fingers through wavy, soft hair, only over a cold bald head that is constantly agitated. Some sense of my femininity, my sensuality went down the drain with my hair.

AppearancesI can compensate. I can wear my “hair” aka a wig. I have scarves and headbands and hats to rival any movie star’s accessory wardrobe. But I’ve lost the appearance that used to be uniquely me. I try to have fun with it, bold color, a variety that I could never have as the old me. I work hard at feeling comfortable as the new me. But It’s never easy.

The wigs itch, most of the hats do too. Scarves are too obviously just covering baldness that lies underneath, equally uncomfortable to keep tied, tight or from creeping down your forehead. The other options, just a poor attempt to mask the reality. When I am in public with some headwear it is impossible not to be self-conscious every second. Afraid the wrong tug will pull it off, be caught in a purse strap and fling off, or a gust of wind to launch the hat down the street. Some days I think, certainly I shouldn’t have to put on this façade. But I do. Day after day.

Saturday, I went to a few different places, an experiment if you will, with the least possible masking of my illness. Just a simple hat. No attempt to conceal the stubble growing underneath. No fake bangs or wisps of hair to falsify it. Just me trying to be bold in my condition.

Everywhere I went. Eyes averted mine, no one looked me in the eye. The store clerks pleasant enough but turned away as soon as they could. Other shoppers browsing, stayed fixated instead of acknowledging me. I caught a few stares, but when I smiled at them to ease the awkwardness, they just looked away as if caught in some sinful act instead of pure curiosity.

For the first time in the span of an entire day, not a single stranger approached or spoke to me. I have experienced more than my fair share of that leading up to this weekend. People from all walks of life reaching out to me in the kindest, most tender ways, offering comfort, consoling or prayers. Maybe it was me. Something about being in an unfamiliar place, made me give off more of my own vibe of unfamiliarity? Who’s to say or know? But it didn’t feel good. Experiment failed.
I put my hair back on. I joined friends who accept me with or without hair, but I still wasn’t comfortable. I don’t know the new me well enough yet. She is learning not to be self-conscious but she’s not there yet. This is not about vanity. This is about identity. This is about wondering how long it will be before my appearance fully reflects the disease inside of me?

The music can play, the rain can stop long enough for the sun to shine through, the rainbows can appear. But amid the laughter and smiles, no one has any idea of the burden of sorrow in my mind and soul. Other people get to go home at the end of the day, they can reflect on their day and go to bed with a relatively carefree mind. I go home at the end of the day and have to study all my meds to make sure I’ve stayed on schedule, haven’t missed a dose. Play catch up with the pain or nausea. Then try to settle into bed and clear my mind of the gravity of my new state of living knowing I am dying.

How much time is left? How will I know when any experience is the last one? The last festival, the last concert, the last visit with a friend? I have an estimate on the finality of my life. Most people do not. It’s hard enough to face the demands and challenges of life without that shroud over you. Some might say it’s impossible to keep a positive perspective. Some people are open enough to ask me outright how I do it every day. That’s refreshing.

I know immediately now if I will like someone just based upon how they approach the elephant in the room.

The next time you see someone in an obvious state of illness, I hope you are the kind of person who can make eye contact, extend a compliment, or project a smile. Don’t let an appearance dissuade you from doing so.