Oct. 31 - Nothing Too Scary

Being a part of the Living Beyond Breast Cancer has been very healing. Helping others - that's what I do best, whether as a mother, grandmother, friend, teacher, or confidante. They have posted another of my writings on their blog; this time about anniversaries. If you choose to read, please look at the comments as well. You've heard my story many times, but to read what others share is touching. I hope, in some way, what I have to say will help others. That is my goal.

Speaking of reaching out - Scott and I will begin volunteering as Spiritual Care Volunteers at the Intermountain Healthcare hospitals in January. I am excited to be back in that role - rather be the caregiver than the care-recipient! And my position as a recipient will help me be a more compassionate giver.

Happy Haunting - Boo Ya! And thank God Pinktober is almost over!

Oct. 30 - Gilda Radner -

From LBBC.org: 

Breast Cancer Awareness Month Recommended Reading, 

Part I: “Butterfly Wishes on Wings” and “It’s Always Something”

As Breast Cancer Awareness Month (BCAM) 2013 comes to a close, our dedicated staff, volunteers and contributors want to share recommended reading that will inspire you, make you laugh and, above all, help you realize you are not alone.

First up, regular blog contributor Ronda Walker Weaver.


It’s Always Something: Twentieth Anniversary Edition (Written by Gilda Radner, published by Simon & Schuster, 2009).

During my chemo treatments, a neighbor knocked on my door, handed me a book, and said, “I found this at the library sale. I hope you’re not offended. She died, but I thought you might enjoy reading it.”
Radner’s “It’s Always Something” is intensely honest. Giving a glimpse into her life as an original member of “Saturday Night Live,” her marriage to actor Gene Wilder and her life with cancer, Radner made me laugh and cry while confirming the need for peer support and devoted caregivers.
Radner did not have breast cancer (she had ovarian cancer), yet her statements reminded me that I was not alone in my cancer journey, especially statements like these:
“Still, even after a lovely dinner, I came home in my new clothes and felt depressed. When I took off my outfit, there was my bald head. I was still a cancer patient. I was different.”
 “Ooh, I hate this, I want to run away, let me get out of this.”
Radner’s overarching message is, “Never give up.” She faced her cancer head-on, dealt with the changes and fears that came her way, and then was brave enough to share her story. If you want validation of your cancer journey, this is the book to read.

- Ronda Walker Weaver

Oct. 29 - Future Telling

There are days when I am homesick for my chemo and hydration days. Life was simple then. No decisions - wake up, go to the gym, shower, put on some comfy clothes and a little makeup, find a hat, go to the oncology lab, be hooked up, sit, sit, sit, go home, sick, sick, sick, sleep, sleep, sleep. Write in my blog, wake up, do it all over again. Work a little, visit a little, read a little, listen to lots of music. No choices, no options, no energy. All of my energy was going to staying alive, and Scott and others took care of any extras. Yet I can't begin the amount of work and energy this took.

Even when I hurt my back, my days were simplified - acupuncture, heat, sit a little, stand a little, rest a little, work. My choices were limited by my energy and ability level.

These days - so many options! Including - should I rest or play with a grandchild. Should I say "yes," and try to juggle, or say "no," and feel bad/good that I did so? Should I ignore and see if it resurfaces down the road? Should I give it my "new" best or the best of others' expectations? Just what are my expectations? What do I let slip by, what do I make a priority? Do I attend this seminar,or stay home and quilt/sleep/watch a movie?

It is nice to know I'm not the only post-treatment woman who has these concerns. What do I put back on my plate, what do I leave off, what do I remove, what new do I add?

I am blessed to be given this tabula rasa - how often in life are we given the opportunity to start over, again? Although I'm still limited by energy, there are so many options for me these days. I'm learning to take things slowly and methodically, weighing, balancing, pulling out my glass ball and looking into the future.

Oct. 28 Daddy's Girl -

The phone is ringing. It's too early for a conversation. That means one thing - something has happened to my next-door neighbor. I walk to the kitchen, not even awake, and answer. It's my mom. "Everything's OK. Your dad has crumpled by the side of the bed, can Scott come help me get him back into bed?" "Yes." And I wiggle Scott, soundly sleeping, and ask him to go help Mom. He does. I look at the clock, 6:15am. Too early for a Sunday. Scott comes home, we go back to sleep.

8:15am. The phone rings. It's my mom. "Tyler's here. Can Scott and you help me get your dad down to the hospital?" "Sure, now?" "I want to shower first, in 30 minutes." So I hop into the shower, quickly dress. Scott takes his turn, and we run next door to determine how our day's happenings.

I love, love, adore, my dad. He's 83. He water-skied until he was 75 years old. He's always been busy - and he's taught his children how to be hard workers. He always hated seeing us sitting. He'd make us work hard then play hard with us. He's a demanding father. When he wants a project done, he means "now, not tomorrow, not next year, now. Hop to it." From him I've learned how to be bossy, demanding, and a hard worker - "Get off your butt and do something besides complain!" From him I've also learned how to be honest - "If I ever catch you in a lie . . .", sincere - "I love you," and generous - "We are blessed. I need your help (usually right now) to weed/mow Sister, or Brother so and so's yard/garden." I've also learned to be organized - "Put it where it belongs, now." And my dad is devoted - to his wife, his church, his God, his family. He's also a great cook - "Taste this, tell me what you think,"and a great craftsman. He taught me, "Give it a try, what's the worst that could happen?" And he taught me how to use his tools without any gender issues, at all. Dad doesn't hold grudges, "Forgive and forget," and he believes in acceptance - "You don't have to approve, but you do have to accept."

He loves having his children around, and more than that, he loves having his grandchildren and great-grandchildren visit him. He speaks lovingly and positively about them. He's usually the first to give a grandchild ice cream, always wanting to hold and hug and smooch with them, and he gives and receives hugs and tons of smiles and laughs.

His health hasn't been the best these past 4 years. He has 15 stents, a pacemaker, neuropathy in his feet, shortness of breath from congestive heart failure, and a bad back, and today, pneumonia. He hasn't let that stop him from being MY daddy. This past year he has checked on me almost daily, walking over with his walker (a Walker walking with a walker), knocking on the back door, and then, not waiting for an answer, wandering on inside, talking as he makes his way to wherever I'm at. There have been times when I've had to shoo him away because I was getting dressed or in a meeting, but for the most part, he has a bit of news to share, something he wants me to read, or "I haven't seen you for a couple of days, are you alive?" "I need you to . . ." or "When will Scott be home, I need him to . . ." He's said to me, more than once, "How is work?" "How is class going?" And even, "Your mom won't let me drive, but I can come and sit with you if you ever need me to."

I've learned a lot about him during the past 2 years. My pains have taught me about his pains, and he has taught me how to handle them. He may have chronic pain, a lifetime's worth of pursuit of a perfect night's rest, and he does his share of complaining about those aches. But - he doesn't talk bad about people, doesn't blame God or anyone else for the life he has. I haven't seen him grumble, wonder or "why me." He makes time for us kids, and he has taught me how to make time for others. 

He's a good man. Today when the doctor asked Dad if he had a living will and a DNR and DNI order, Dad replied, "Do it all. Keep me alive as long as you can." I teared up a little and sent those same words to heaven, "Do it all. Keep my daddy alive as long as You can."

Oct. 25 - Tell Me Lies, Tell Me Sweet Little Lies - NOT

Don't lie to me. Don't tell me what you think I want to hear. Don't tell me white lies. Don't flower me with dishonest praise. Don't lead me on with words of half truths and false promises. Don't pacify me, don't mollify me, don't play me.

Tell me the truth, and give it to me straight. Tell me honestly. I want the facts, support, and then, perhaps, a little emotion.

I can't be bought, I won't be sold on rhetoric. Words without actions are dead.

Amen - 

Oct. 24 - one more post about HAIR!

A year ago this week I began losing my hair. My scalp began hurting, as well as other hair-baring places on my body, and slowly I began to find body hair in the shower, then head hair. I got onto a forum for women with breast cancer (MyBCTeam), and I asked about this pain. The answer was this was the beginning of hair follicles dying. One of the ways to ease this pain was to shave my head, now. This would also lessen the amount of hair I would be picking up from the places I laid my head.

I know I've posted about my hair multiple times, but if a woman's hair is her crown, then losing her hair is a dunce cap. Or better yet, losing one's hair is a sign of disease, illness, cancer.

I haven't posted these pictures before, so I will. I'm also posting this video, to show the metamorphosis of removing hair (I'm not a fan of the battle terminology, but the video is striking). As I watched this video, I remember the pain, the ache, the finality of this act.

However - life does go on! My hair is back, and there are times when I think, "If I was 25 and 125 pounds, I just might have shaved my head."

Barb was 28 years old when diagnosed with breast cancer in 2011.

My haircut process - 

Oct. 23 - On Being Good -

On Being Good, and Being Remembered - 

I am an impatient person - although I have patience. I am not necessarily one to wait for something to happen, rather, I prefer making the something happen. And I'm OK with that, mostly. However, sometimes in my rush to making things happen, I stumble, trip, fall flat on my face, offend - hence, I need to be patient, be still. I am learning. And Cancer has taught me how to wait -

With that all said, my deepest desires are just to be a good person. In my morning meditations, I read this scripture from Acts 10:38 - "[He] went about being good." That's what I want to be said about me now and when I'm gone. Perhaps I can be worthy of this as an inscription on the wooden vase holding my ashes. In the meantime, can my daily actions, and in-actions for that matter, be a shining example of this? I hope so.

On my office wall I have the following thoughts:
"I will not let individuals or circumstances affect my behavior."
"Seek first to understand rather than to be understood." St. Francis of Assisi
"Sometimes your only available transportation is a leap of faith." Margaret Shepherd

These are daily reminders to me that I must be about doing good, patiently. What about you? Quotes, motivational sayings, thoughts, scriptures - what keeps you centered, and - what do you want inscribed on your urn or headstone?

Oct. 22 - Metastatic BC

Metastatic Breast Cancer is a woman's worst nightmare. I work with women who are living with their cancer - women who make it through the day, living life on life's terms. As always, I will send a hat-tip to Living Beyond Breast Cancer and the goodness this organization offers.

From the LBBC.org website:

LBBC is One of 15 Charities and Advocacy Groups in the Metastatic Breast Cancer Alliance

We are proud to announce that LBBC is among the 15 charities and organizations joining forces in the Metastatic Breast cancer Alliance (MBC Alliance) to increase awareness, education, research and policy about stage IV breast cancer.

Read more about the MBC Alliance and its goals from this press release by the Avon Foundation For Women:

Fifteen Leading Charities and Advocacy Groups Join Forces to Change the Way Metastatic Breast Cancer is Understood and to Increase Focus on Research 

Metastatic breast cancer causes 40,000 deaths each year and an estimated 155,000 women and men are living with metastatic breast cancer in the U.S.

New York, NY (October 11, 2013) – This October, between the survivor celebrations and screening messages, you will be missing some important facts about breast cancer:

• This year, 39,620 women and 410 men will die of metastatic breast cancer in the United States, a number that has changed little over the past 40 years.
• Up to 30% of early stage breast cancer patients will have recurrences, as early as a few months and up to 15 years or longer after initially being diagnosed.  When breast cancer comes back, it spreads to many other parts of the body, including bones, liver, lungs, and even the brain.
• While treatments for metastatic breast cancer can’t offer a cure, they can prolong life—but not in all patients.
• October 13^th is Metastatic Breast Cancer Awareness Day.

That is why 15 leading cancer charities and advocacy organizations have joined forces to form the Metastatic Breast Cancer Alliance or “MBC Alliance,” with the vision of transforming and improving the lives of women and men living with metastatic breast cancer.  More information about the MBC Alliance is available at http://www.MBCAlliance.org/.
The Metastatic Breast Cancer Alliance aims to unify the efforts of its members and to increase awareness and education while advancing research and policy – efforts for metastatic breast cancer that have the potential to extend life, enhance quality of life and ultimately find a cure.  The Alliance is being formed for the estimated 155,000 women and men who are living with metastatic breast cancer today in the U.S., for whom treatment never ends. Their hope for longer lives lies with advancing research specifically focused on metastasis.
“Together, the MBC Alliance will work towards a time when all patients with metastatic breast cancer and their caregivers can access the care and services they need, and find real hope in research focused on prolonging their lives,”  stated Musa Mayer, Founder, AdvancedBC.org.
“People living with metastatic breast cancer have unique information and support needs that the Alliance will aim to deliver. The Alliance will also push the research agenda to focus on extending life, improving the quality of life and ultimately ending death from the disease,” stated Marc Hurlbert, Ph.D., Executive Director, Avon Foundation for Women. “Founding sponsors Celgene, Genentech and Pfizer have helped launch the Alliance because they also believe that together we are stronger than the disease.”
Initially, the MBC Alliance will conduct a Landmark Analysis to assess gaps, duplication and opportunities in the field to gain consensus on a path forward to addressing the unique needs of those living with metastatic breast cancer.  The Alliance will issue a report from the analysis in early 2014 and will aim to raise awareness around current promising efforts, and develop new approaches and actions to advance metastatic research, as well as work to understand and advance policy issues to ensure inclusion of metastatic breast cancer.

Key Facts

• October 13^th is Metastatic Breast Cancer Awareness Day.
• An estimated 155,000 women and men, young and old, are living with metastatic breast cancer in the U.S.
• Metastatic Breast Cancer currently has no cure and treatment is life-long, with patients switching from one drug to the next after each fails to control the cancer.
• Among people diagnosed with early stage breast cancer, 20-30% will go on to develop recurrent, metastatic disease.
• Metastatic (Stage IV) breast cancer is the initial diagnosis for 6-10% of all new cases each year in the U.S.
• There are different types of metastatic breast cancer, just like there are different types of early cancers.

##

About the Metastatic Breast Cancer Alliance
The Metastatic Breast Cancer Alliance ( http://www.MBCalliance.org/) is being formed by fifteen cancer charities and advocacy groups to transform and improve the lives of women and men living with metastatic breast cancer.  Founding member organizations include AdvancedBC.org, Avon Foundation for Women, Breastcancer.org, CancerCare, Cancer Support Community, Dr. Susan Love Research Foundation; Living Beyond Breast Cancer, Metastatic Breast Cancer Network, Research Advocacy Network, SHARE, Sisters Network, Susan G. Komen, The Breast Cancer Research Foundation, Triple Negative Breast Cancer Foundation and Young Survival Coalition. The Alliance is being funded in part by Celgene Corporation, Genentech and Pfizer.
Follow us on:
Facebook: https://www.facebook.com/mbcalliance/
Twitter:  @mbcalliance
YouTube:  http://www.youtube.com/user/mbcalliancevideos

Oct. 21 - Give Me Some of That Old Time Religious Music -

During my chemo treatments my good friend, Russ Kendall, producer of the show, "The Song That Changed My Life" for BYUTV (If you have a Roku box, you can watch this series without having cable/dish, etc.) would send me a message any time a new show was being released. On Sundays I would lay on the couch, bundled in a hoodie and blanket, with the space heater running, and watch and soak in the beauty of the stories and music. I would fall asleep to this music, wake, rewind, listen again and again.

I've been battling a head cold, allergies, this week, so I was home in my robe with oils and heat trying to get better. Uber-protective Scott has been home with me. We just learned  Kaleidescope Picture's show on Howard Jones, won a regional Emmy - whoot (you can watch it on Vimeo here)! Scott and I watched 3 of these shows again, and I'm touched, almost to tears, with the message and the music. I can't think of any better way to touch my heart than with stories and music. Russ' and crew's assembling of these genres is amazingly beautiful.

When I couldn't read, watch a movie, or visit, I turned on music. Music soothed my soul, still does. So I've been thinking about religious music that has affected me -

Hymns: Particularly - Be Still My Soul; Lord, I Would Follow Thee.

Instrumentals: I love Mark Geslison's acoustic arrangements of spiritual tunes. Mark is an amazing musician and teacher, having perpetuated the love for the simple tunes and stellar playing in hundreds of youth, including my Tyler and Jenna, who performed for years with two other musicians, Russell and MaKenzie, as Blue Roots, for several years.

My all time favorite "hymn" is Bill Staines', "All God's Creatures Got a Place in the Choir." 

And I am definitely a fan of old-time gospel music. Tunes from the Louvin Brothers, the Cash Family, cowboy gospel songs, and southern gospel music touch my soul. The recent revival of this music in Utah, with the help of The Lower Lights, has been refreshing.

I feel my Father's love speak to me through these tunes -

Oct. 18 - Cannot -

I found this message a year ago, shortly after beginning chemotherapy. It has served as a motivator and a reminder:

True - so very true. 

Oct. 17 - This -

 

Published on Oct 13, 2013

 

Pink is everywhere in today's world. But there is more to cancer awareness than just a pretty colored ribbon. We are more than the products being pushed for 'the cure.' We are more than the sexualization of a disease that takes so many lives. We are more than silly FB status updates showing "support". We are more than just one month. We are more than just one color. It's time to push pass one cancer having the loudest voice. It's time ALL cancers be acknowledged equally. 

 

https://www.facebook.com/realcancerawareness/info 

Oct. 16 Things People Say -

Seems like everyone has an opinion in regards to my cancer, treatments, and recovery. And, since this has been a public year, I thought I'd share some of what I've heard. Most good, some necessary, some just odd -

"Holy cow, Ronda. You look fantastic."
"You haven't changed a bit."
"You have really changed." 
"When are you having reconstructive surgery?"
"Can I see your scar?"
"Can I touch it?"
"Do you still have your nipples?"
"Do you have feeling?"
"Are you sure you had cancer?"
"Has it spread?"
"Looks like your treatments didn't hurt you at all."
"Recovery sure was slick for you."
"Your cancer must not have been too bad."
"Goodness, I could've never gone through what you went through."
"You are so brave."
"You are my hero."
"You've sure had a good attitude about this."
"You haven't lost your sense of humor!"
"What happened to your sense of humor?"
"Is that your hair?"
"You still seem a little slow."
"How long does it take to recover?"
"Is it going to come back?"
"When do you finish treatments?"
"When will you be back to normal?"
"My best-friend's mother's came back 5 years later, and by then it was too late."
"How long before you know if you're cured?"
"Gosh, you look like you have been in a war."
"Are you sure you can handle this?"
"I love you." 
"This isn't about you."
"Have you learned your lesson?"

 
And this video (I can't imbed it): 
http://supportthefightagainstbreastcancer.com/sht-girls-say-to-girls-with-breast-cancer/?utm_source=social&utm_medium=bcsfan&utm_campaign=sht-girls-say-to-girls-with-breast-cancer&utm_term=20131012

Oct. 15 - Not-to-do List

A Not-to-do List for the Chronically Ill 

(or those recovering from long-term illnesses/treatments)

Today’s post comes from Toni Bernhard, a former law professor who went to Paris for a holiday with her husband, got sick, and didn’t get better. Toni’s had to learn a lot about being a patient, she describes this in her book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.  

I love To-Do lists. I depended on them when I was working outside the home. I’ve depended on them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.

A few weeks ago, I realized I could benefit from a NOT-To-Do list that would remind me of my limitations – limitations I often ignore either because I’m in denial or because I want to please others. 

Unfortunately, I always pay the price physically, and that’s not good for me mentally either.
So here’s a NOT-To-Do list for those who live day-to-day with chronic pain or illness (or, as is often the case, both).

1. DO NOT say “YES” to an activity if your body is saying “NO.”

I’ve ignored this NOT-To-Do so many times that I’ve lost count. It can be so hard to turn down an activity that makes me feel more like a healthy person. When I break this rule, it’s as if I’m a child again, shouting at my parents: “Look at me! I can ride a bike with one hand!”
My most recent bout with ignoring my body began innocently enough about a year ago. Two friends were kind enough to coach me in learning Qigong. I learned movements with wonderful names, such as “Against River Push Boat” and “Huge Dragon Enters Sea.” Then came “Ancient Tree Coils Root.” You imagine that you’re a strong tree, sending roots down into the ground. Unfortunately (for me), you execute this by pointing the tips of your fingers toward the ground, putting your weight all on one leg, and then squatting down on the knee of that leg.
For the first few months, I ignored the “one leg” instruction. I stood on two legs and only squatted down partway. I was listening to my body. But one day, I decided I wasn’t progressing fast enough, so I picked up one leg and went all the way down on the other. My knee went “crunch” and, for several months afterwards, I was limping and had knee pain to add to my daily symptoms. Why did I ignore my body? I was frustrated by my limitations and so I rebelled. Lesson learned though: DO NOT say “yes” to an activity if your body is saying “no.”

2. DO NOT call yourself names or otherwise speak unkindly to yourself.
Here’s an anecdote from my book How to Be Sick:

At a retreat in the 1990s, teacher Mary Orr told this story:
She was in the middle of a harried day in which she had too much to do and too little time in which to do it. At one point, while in her car, she realized she was talking to herself in a way she would never talk to others. I don’t remember her exact words, but I remember their impact. They resonated with me because of their similarity to the way I often talked to myself:
“How stupid of me to take this route; it’s always full of traffic.”
“I’m so dumb, I forgot to bring my notebook.”
“You clumsy idiot—you dropped your drink again.”

Mary’s story was a wake-up call for me. I’d never call a friend “dumb” or “stupid” or an “idiot.” But I’d called myself those names. The Buddha said: “If you search the whole world over, you will find no one dearer than yourself.” I decided to take his words to heart and so I began to treat myself as if I were a dear friend. The result? I felt so much better, as if I’d shed a tremendous burden—the burden of self-judgment.
A good test for whether you’re treating yourself kindly is to ask if you would speak or act that way toward a loved one in need. If not, don’t speak or act that way toward yourself. It’s hard enough being sick and in pain. There’s never a good reason to add negative self-talk into the mix.

3. DO NOT try a treatment just because someone said it cured him or her.
I have a theory about many unconventional treatments. Depending on a person’s condition, it’s possible to spontaneously recover from an ongoing illness. Some people do. When that happens, they attribute their recovery to whatever treatment they happened to be undergoing at the time, no matter how unconventional it was. The reason I think my theory is credible is that I suspect I’d do the same thing were I to wake up not sick tomorrow morning.
So don’t assume that any seemingly magic cure is for you. Do your research, consult with those whom you trust, consider your pocketbook. I like to check my tendency to jump at treatments (I get emails almost every day telling me to try this or try that), by reflecting on how, if this really were a cure for my dysfunctional immune system, it’s highly likely it would be all over the internet on sites I’ve come to trust.

4. DO NOT wait until the last minute to get ready for something.
Waiting too long is an invitation for a surge in adrenaline to get you through. If you’re like me, that draining sensation of “coming down” off adrenaline is the first sign of a crash. When getting ready (showering and dressing for an appointment, picking up the house for visitors) try doubling the amount of time you think it will take.

5. DO NOT strive for a spotless living environment.
Corollary: DO NOT feel bad or criticize yourself for not striving for spotlessness. That would be engaging in unkind self-talk and it’s already on your Not-To-Do list.

6. DO NOT “shop ‘til you drop.”
That’s for healthy people.

7. DO NOT wear uncomfortable clothes.
Your body is already struggling. Don’t subject it to restrictive panty hose, tight jeans, high heels (of if you’re a man, whatever the male equivalent would be). Exception: If there’s a special occasion that will give you a mental lift if you break this rule, break it. But remember your reasons for breaking it, so that you don’t slip into negative self-judgment if those too-tight clothes start to chafe or those fancy-looking shoes begin to hurt.

8. DO NOT think about pleasures from your pre-illness life, freeze them in time, and assume they’d be as much fun today.
Even if you aren’t sick or in pain, life is in constant flux. Among the healthy, relationships change, job conditions change, bodies change. I’m going to write about this soon in a piece I’ve tentatively titled, “Do You Suffer from ‘Good Old Days Syndrome’?”
What would you put on your Not-To-Do list? I’m looking for more items to put on mine, so please share your thoughts.

© 2013 Toni Bernhard www.tonibernhard.com

http://myheartsisters.org/2013/10/06/not-to-do-list/#more-20082 

Oct. 14 Before, During, After

One year in 3 pictures - 

                           Jan. 2013

  Sept. 2012                                                                                             Oct. 2013       

Oct. 11, Part 2 - Confronting with Courage

In the name of honest writing -

It has been a hell of a week. One hell of a week. I've tried so hard to be upbeat, looking back and seeing the blessings of this past year, learning from them, moving forward, but I ain't gonna lie - tough.

Today I finally broke down and sobbed, hard tears, ugly cry -

I'm sad, I'm mad, I'm mournful, I'm just lost, lost, lost in so many ways. The past 2 years have been very difficult. I've never put myself in front of any physical danger; I'm safe. I can push myself physically, but I'm not going to para-sail or even snow-board anytime soon. I am comfortable pushing myself intellectually, spiritually, emotionally - that's "safe." Until the past 2 years. And I made it through my back stuff, and I was on the road to recovery, and then cancer and this year, and with this week's anniversaries, and looking back, acknowledging them, has been hard.

I don't get it - I don't know why I have had cancer (particularly breast), and I don't know why I "chose" chemotherapy and radiation, and with that the short and long-term consequences of the treatments including osteoporosis and PTS, and TBI, but I guess I did. And being on this side of half of the "treatments" and in the receiving end of recovering and the after-affects is a lot of work. I survived those 9 months, survived, and now - with recovery - day in and day out - it's tough.

What came easy a year ago - physically, intellectually, socially - is hard now. Hard - takes energy, concentration, focus, coordination. Getting up in the morning and choosing to have a good attitude, choosing to go to the gym, choosing to work, to teach, to interact with others, to write, to love me, is tough, and it's a conscientious action every day to choose joy and hope. And there are days when I don't want to choose joy and hope, but I do, because I will not, will not, go elsewhere.

But this week, I have chosen to dip my toes (thank heavens I didn't stub my toes) into the sorrow that a year of loss and pain and anguish and sadness and horror and fear and the most unbearable unexplainable physical and mental pain I have ever experienced has brought with it. How does one deal with anniversaries of loss, of survival, of "whew"? Acknowledge and move on? Walk around and ignore? Celebrate survival?

"Self-acceptance comes from meeting life's challenges vigorously. Don't numb yourself to your trials and difficulties, nor build mental walls to exclude pain from your life. You will find peace not by trying to escape your problems, but by confronting them courageously. You will find peace not in denial, but in victory." (Swami Sivananda)

I cried to a friend as I walked in the sun this afternoon. And then I stopped by my son's home. And once we got the kids settled into a movie, I cried to Tyler and Meili. Sobbed. Poured out these same fears. Interestingly, Meili said, "Tyler hasn't known what to do for you. He's felt lost as to how to help you." I mulled that over as I walked home (who else is so blessed to have a son and his wife and their beautiful children live 2 blocks away). And the answer to Meili's pondering came - I need him now. I need them now. I need his family to help me in my recovery. In my moving forward. That's what he can do for me - help me move forward, in hope, in joy, in peace, in victory.

Happy weekend ya'll - thank you for your love these past 2 years. Thank you for your love moving forward, and I hope that I can in some way, begin the payback -

Oct. 11 Cancer Hats -

Remember these pictures and these?  

This note from the woman who made several of my hats: 

Hi! I don't know if you remember me, but I made some of your hats! I hope it's alright that I've used your beautiful picture on my listing for my cancer beanie. (I gave Nick Stone credit for his wonderful photo.)

You were such an inspiration to me, and I will be donating $5 to the National Breast Cancer Foundation every time someone purchases one of those hats. Thank you for being so awesome! Here is a link to the listing: https://www.etsy.com/listing/111039488/breast-cancer-beanie-five-dollar?ref=shop_home_active.   Much love ~ Sarah

From Sarah's Etsy Page: 

 

This cute crochet flapper hat is sure to keep you warm while still looking stylish! This beautiful and flattering hat is a wonderful choice for chemotherapy patients as it is made from super soft, acrylic yarn - never scratchy! This hat comes in your choice of four great pink colors, and also black and grey!

*** I will make a $5 donation for every Breast Cancer Beanie sold in one of these four pink colors, black, and heather grey, to the National Breast Cancer Foundation, to provide early detection services and for Breast Cancer Research. Pink is the nationally recognized color in the fight against breast cancer. Support the cause and those you love!***

The first picture here is of Ronda...a very courageous cancer patient I had the pleasure of working with! Isn't she gorgeous? The other hat shown above is strawberry with a pale pink colored button. (Note: button may vary from the one shown in pictures.)

***PLEASE REMEMBER TO STATE WHICH COLOR(S) YOU WOULD LIKE IN THE MESSAGE TO SELLER SECTION AT CHECKOUT!***

Ronda's picture is by photographer Nick Stone - www.nickcstone.com

Oct. 10, An Anniversary, of Sorts -

A year ago today, Oct. 10, I began chemotherapy treatments. You can read those posts here and here. As I look back at the pictures of that time and think about the firsts involved in my cancer treatment I'm scared, I taste fear even looking at the below picture. I see the angst and apprehension in my eyes as well as the "well, I'm here, let's get it over with" look. Hell, hell, hell is all I know how to describe that day. I was a lamb going to slaughter. I was so stinking innocent, and since, my eyes have been so opened to the pain and sorrow and loss that cancer can bring. Honestly - I still cannot believe I made it through the last year.

September 06, 2013 began my year of anniversaries rather than firsts. And I really don't know how to celebrate, commemorate, mourn them. Like today - I have a need to acknowledge that a year ago today I began chemo. How? Do I celebrate that I'm here to remember today or mourn the losses chemo brought into my life? And what happens when Saturday arrives, and that's the day chemo pain was so horrible I wanted to die, something I've never wanted before, such terrific pain that if I could have exploded, I would have (I think I was moments away from exploding). I can't blow off that day, nor the people who helped me survive my first chemo treatment - Irma, Cody, Cheryl, Betty, Carolyn, Mom, Scott.

(First day of chemo)

Do I commemorate losing my hair? How about finishing chemo? How about beginning radiation? How about ending radiation? How about hair growing back in? How about ending treatments? Or do I move on, as if this past year never happened?

How do I acknowledge the loss of life and gaining life? Isn't that really what happened? I am not the same person I was. And damn it, that makes me mad, in so many ways - I miss my snarkiness, my youth, my "to hell with it" me. And yet, laying in bed with Scott last night, talking about this, he shared, "You are better. So much more than you were. You are comfortable in you. You seem more calm, more sensitive, more generous." Of course I wanted to yell, "WTF? You mean I wasn't?" And then I answered my own question with his reply!


I've made it through the tunnel of hell, and I'm on the other side. I'm beaten - what I thought was going to be a drive in the country on a few dirt roads turned into an endurance drive through high winding roads with drop-offs on both sides, in rain, snow, low-lying clouds, and no idea of what was around the bend. The past year's drive had few elements of "fun," not many stops to view the scenery or roadside restaurants. Today I'm out of the clouds, onto paved roads, gazing at the fall leaves.

But wait - what I'm seeing in hindsight is this - the journey was exactly what I needed. No - not what I ordered, not what I wanted, not the road map I chose, but what I needed. And sometimes I/we don't see what I/we need until it has been given to me/us.

My road trip isn't over - still weight to lose, lessons to learn, mind to recharge, anxiety to calm, but now I have more confidence in the journey. Because of where I've been, I am a little more prepared for what might be around the corner. After all, I am beginning, again, what a gift! And I'm praying for sun - with a chance of surprise!

PS - We're going to a pumpkin farm and corn maze today with kids and grandkids. A perfect way to move forward!

Oct. 9 - National No Bra Day and Another Perspective on Pinktober -

From the blog: cancerinmythirties.wordpress.com, a much sassier take on Pinktober and commercialization -

National No Bra Day and Breast Cancer Awareness Month 

— OR — 

Please Put That Pink Can of Soup Down & Put Your Bra Back On

I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge. 

Are you kidding me?  How on earth could a day where girls and women are encouraged to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?

I think the answer is simple.  It is not.

Like so many women–and men–who have faced this disease, I have lost my breasts to cancer.  Though I had a terrific surgeon, it was a physically and emotionally disfiguring surgery.

The cancer had gone so deep and was so extensive on my left side that it was at first inoperable.  Even after months of chemo, my surgeon took as much tissue and skin as possible and went deep into my axilla (underarm area).  The cancer had metastasized to my lymph nodes and had invaded them to such a degree that they broke open to allow the cancer cells to go beyond the walls of the nodes.  Because of how invasive the surgery was and of how much nerve damage, etc. resulted, it was not only extremely painful then, but continues to be a source of pain and phantom sensations that affect my entire upper torso even today.

I required over a year of physical therapy just to be able to raise my arms again and I still don’t have full function or range of motion.  And, because of pain, swelling, conspicuous compression sleeves and gloves, I am constantly reminded of the lymphedema that resulted from the surgery and loss of my lymph nodes.  Oh, and the life-threatening infections that forced a couple of hospitalizations and four months of massive doses of antibiotics this summer (almost 2 years after my original surgery), are also a little reminder of some of the things that the bilateral mastectomy and lymph node surgeries have left me with.  And there is so much more…

So the thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive.  In fact, it feels quite the opposite.
I consider myself to be an open-minded person.  I do my best not to judge others or their beliefs and ideals.  I have a pretty good sense of humor and am usually the first to poke fun at myself.  And I make light of breast cancer and my struggles, treatments and their side effects, lack of breasts, fear of death, etc. fairly frequently.  It is how I cope.  But, given what I have been through, I think I have earned the right to joke and make light of how this terrible disease has affected me.  But if you haven’t been there or taken care of someone who has been there, then you should think twice before you publicize a day that jokes about putting the first body parts we usually lose to this disease “out there” on display even more conspicuously and then labeling it as an activity that helps our ’cause’.

We live in a society that makes a huge hoopla about breast cancer while at the very same time trivializing the seriousness of the disease.  How can we be so contradictory?

While I am beyond thrilled that breast cancer is no longer a taboo issue and that people are talking about it, the commercialism has gotten out of hand.  There is nothing pink and rosy about breast cancer, yet it has been pink-washed to death.  It is a serious disease that kills.

And while I do think we need more awareness and education (about metastatic disease, about how young women CAN develop breast cancer, about how women (young and old) DO die from this disease, about the importance of research, etc.), I don’t think we need the kind of awareness that buying a jar of salsa with a pink ribbon on it brings.  While I hardly ever see “awareness” products addressing the topics above, I can’t go anywhere without seeing pink products.  Heck, I just have to look out of my front window to see giant pink garbage totes.  The stores are filled with pink as companies try to make a buck off breast cancer.  If you look carefully at these products, you’ll find that some of them don’t even donate a cent to breast cancer awareness, support, research, etc.  And oftentimes those that do make a very minimal donation–and not always to organizations/programs where the money is well spent.

What is most unfortunate is that well-meaning people are willing to buy pink products, even pay a little extra, because they think they are helping to do something to “cure” breast cancer or to provide “hope” to breast cancer patients.  Why is this sad?  Because those dollars spent on pink flowers, pink shirts, or a pink box of crackers or spaghetti sauce could be going to research, our only real “hope” of beating this horrible disease.
So please put your bra back on, put down those pink garbage bags (unless you really like pink that much!), that pink “awareness” pepper spray keychain, and that pink breast cancer “awareness” vibrator and dildo (yes, I’m blushing and yes, these are real things that their merchandisers say will “help you raise breast cancer awareness” — though they are shipped discretely in plain, unmarked boxes so no one knows what you purchased) and send a few dollars to an organization that devotes their fundraising dollars to research.  You just have to do a bit of homework or read the labels on those pink items to see where your money is actually going.  [There are pink products out there that do help to fund research, etc. -- they seem to be in the minority, but they do exist.]  But, if you don’t like homework, here are three great organizations — there are many others, but these are some of my favorites:

*** http://www.standup2cancer.org/ ***:  [This is a terrific one -- and it's not just for breast cancer, but all cancers.]  Our mission is to fund collaborative, translational cancer research to bring treatments from the bench to the bedside faster, and save lives now.  Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants.  100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead.
*** Metavivor.org ***: From support groups to funding vital research, our programs sustain the power of hope.  Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVERY dollar count as we work with researchers to regain longevity with quality of life.
http://www.theibcnetwork.org/:  Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations. Our all volunteer board is focused on education and funding research for this 200 year old orphaned form of breast cancer. No Lump Still Cancer.
…or consider a group that helps cancer patients and their families cope with their illness.  For example:
CancerIsAJerk.org  — This is a small charity my dear friend jme set up to help families affected by cancer.  You can make a financial donation  or  purchase “Cancer Is a Jerk” t-shirts with all proceeds going to help actual families affected by cancer.  You can also contact jme through the charity if you’d like to sell shirts as a fundraiser with all proceeds going to benefit cancer family applicants in general OR designate a specific family of your choosing.  And if you know a cancer family in need, please encourage them to apply for assistance.

—

And, of course, don’t forget to go for your regular mammograms and to feel your breasts when you can (and report any changes to your doctor) because doing these things IS important.  It is how I found my own lumps, almost 18 years before I was due for my first mammogram (according to the recommended screening age back in 2009).  While the vast majority of lumps are benign, I still believe it’s always best to bring your breast changes to the attention of your doctor.  Thanks for reading…

I will leave you with a picture that I think is my best advertisement for Breast Cancer Awareness Month.

Me — 5 Days post bilateral mastectomy and complete ALND (Axillary Lymph Node Dissection)

Side note:  The ACTUAL National No Bra Day is July 9th annually.  Someone had the great idea to do a bra-less day during October — Breast Cancer Awareness Month — to support “the cause.”

 

Oct. 8 - Adventure

It is said that women who survive cancer, any type, have a bigger zeal and zest for life than they did pre-cancer.

I know lately, when I've been faced with difficult things, including recovering from my broken elbow and losing 30 pounds of chemo weight, I think, "I've had breast cancer, this is just a little thing." And then, it does become little, and I do the "tough" little thing.

This article talks about women who've had cancer and who have moved forward doing more, bigger, better than before. This website tells how one woman took her experiences and changed them in a way to benefit others.

I've been trying to think about how I want to change the world. I've come up with these things:
1. Be a better person
2. Hug more people more often
3. Don't be afraid to share my cancer story, my divorce story, my life story
4. Take time to meditate on peace, daily
5. Teach
6. Chaplain
7. Say "I love you," rather than "love you."

And what about those risks?
1. Find "contentment"
2. Watch movies with Scott (he sat by me for many many hours, I can sit by him for a few)
3. Love more
4. Do service for others in a foreign country
5. Find employment (continue with employment) that allows me to do the above, without money being the driving focus
6. Eat some meat (tough for a 20 year vegetarian)
7. Not have a faith crisis

There's more, I know there is, to life, than staying hunkered down under a warm blanket (I did that for 6 months, it's not pretty). I want to reach out, with both hands to others, reach inside with both hands to myself, I want to die living.

What risks are you taking? What risks would you suggest I take?
 

(Image from: www.kickkicksnare.com)

Oct. 7 - More Inspiration

Oct. 4 - 'Tis a Gift to be Simple -

I have had a beautiful week. I am so very fortunate, in so many ways, and I have tried to stay close to the simplicity of these blessings the past few days. Blessings such as: solid warm/cool home, home that is easy to clean, home with great windows, home furnished just the way I like, home that smells good, working appliances, things to put in these working appliances, purple flowers on my table, orange pumpkins on my porch, a bountiful garden, a deck that has entertained many people and provided me with a morning meditation spot, a comfy bed (last year at this time we were purchasing twin beds to make it through chemo; we traded those for a lovely king when radiation was finished), an Alaskan bathroom, art on every single wall and on every shelf and flat space, a library filled with favorites, a home that can handle nicks and bumps and scratches and scuffs, and my list goes on. When it comes to "home," I want for nothing.

Happiness is -

With this in mind (and because of the conversation I had with the angry lady on Monday - see my FB post), these questions have been mulling around, so I'm asking:


What makes you happy?
What do you do to be happy? 
What brings you happiness?
How do you cultivate happiness?
How do you get through your day?
What makes you smile?
When was the last time you laughed out loud?

Oct. 3 - Virtual Support Groups

I cannot say enough good about this organization - Living Beyond Breast Cancer. I first learned about them when searching for information about my type of breast cancer - Triple Negative. Not only did I find resources, I gained knowledge, and now, I blog for them, and I'm a volunteer for their Helpline, (888) 753-LBBC (5222).

This organization, staffed by women who have either had breast cancer or had a loved one with breast cancer, knows what women want/need to know. On their website you can find material regarding most types of breast cancer and treatments, webinars for a variety of topics, fund-raising (if you live near or buy from White House Black Market, they are great supporters of this organization), with only viable entities and always honest in their methods, conferences, and celebrations. You can read about some of the women who serve at LBBC here. I learned about LBBC from a WHBM window display last October.

Another organization, recently partnering with LBBC, is MyBCTeam. A conversation-based support group, this team was where I went when I had questions, needed to scream, or needed an applause from my peers. We give virtual hugs, thumbs up, and advice. No question is too far-fetched or simple.

I have attended a couple of support groups locally, live, and I have been most blessed, in my moving forward process with Lifting Hearts, a group of women who are friends and mentors - women who are still going through treatment and women who have 7+ years of "sobriety" under them. They meet monthly and have a speaker on breast-cancer-related topics. We are each others cheerleaders.

I need to assemble a list of blogs and organizations that support women with breast cancer, and their caregivers. I know something like this would have been so beneficial as I began my journey. 

With all the pink marketing going on, this seems to be about the most honest and approachable local event I'm aware of, and ya'll are invited (let me know if you are interested).

So, there you go. Women "tend and befriend," and these organizations have made that possible, even when we're too sick to get out of bed or too tired to put on a smiley face, these organizations have been "here" for me.

Oct. 2 - Motivation 1

I thank all of you who have sent me motivating thoughts this past year. Below are some of my favorites:

Oct. 1, Pinktober -

What should "we" - you and me, my friends, do for Breast Cancer Awareness Month, beginning Oct. 1?

So much out there - but I find most of it very commodified, commercialized. I'm not asking anyone to buy a pair of glittery pink socks, a gaudy pink keychain, or pink-scented body wash, as if that's support (.5% being donated to some organization, but know what? I saw lots of ugly pink stuff on the clearance rack at a dept. store yesterday, that means .25% donated, if and when the ugly items are purchased). And "reposting" if you love someone who has BC is kind, but odd too. Love "me" all year, not just one month out of the year!

I'm not sure if I'm even a believer in the Making Strides or Race for a Cure events. If I am going to be celebrated (I am a breast cancer survivor), then I want to be made aware of those plans - I'll be "honored," but I haven't been invited! And how much really goes to breast cancer research/support? Maybe next year I'll feel a little more inclined to participant.

However I will wear my pink - watch and ribbon, blog daily for the month, work on getting rid of my chemo pounds, and thank God for life. Get your pink on - if it's the only thing you do! Here's mine -

A few suggestions for this month's celebrations, and beyond:

1. Know your boobs. 
1. Husbands - know your wife's boobs.
1. Go with your wife/girlfriend to her physical, come in when the doctor/nurse is examining her breasts, so you know how to and what to look for. 
2. Touch them monthly, feel them, recognize usual bumps, know what's not normal. 
3. Encourage the women, and men, in your life to know their breasts. 
1. Cancer can hit anyone, male or female, at any age. 
2. Get a base-line mammogram by 40. 
1. They don't hurt, not even on my ravaged boob. Just do it. 
2. If you don't have insurance, there are organizations that regularly host mammograms and pap smears for women without insurance. 
3.  Be grateful for life. 
1. Go one day without complaining. 
2. Smile a little longer. 
3. Watch the sunrise - consciously. 
4. Hold a loved one a little closer, a little longer. 
5. Give a compliment to a stranger.