When I was newly married, trying to make a happy life and comfortable home on minimum wage jobs, a friend shared this message with me - "Sometimes we are so busy existing that we forget to live." I decided I would make this my motto and do some living every day. And I have tried to live my life in an adventurous fashion.
Well - life does get in the way of living sometimes, and we often just have to endure to make it through the discouraging day, depressing week, disheveled month. And really, existing sometimes takes all the energy a person has. I should know - correct? These past 2 1/2 years have certainly been more about existing than about living. I'm alive, although quality of life does come into play. But multiple surgeries, cancer treatments, and residual side effects can only control me to a certain point.
As I've mentioned before, this healing time has also been a time of grief for me; the grief I've felt has touched me to the depths of my soul - I've grieved the loss of me, the loss of the could-haves. But I refuse to linger there, standing in that murky pool of water called existing. I'm moving forward, perhaps slowly, but pushing, one wader in front of the other; the stream is calling, the fresh water called living bids me onward.
And with this new year upon me, I am focusing my intentions on what is upstream! I can't wait to dip my toes into this new stream called 2014. My simple New Years resolutions are to live, to be excited about living.
A good goal may contain these elements:
1. Attainable - "Be kind to my spouse this year" may be unattainable, but "Work at being kinder to my partner" is doable.
2. Positive - Don't trash talk your goals. Our mind hears positives, so perhaps "Eat healthy foods" rather than "Don't eat so much junk food" is a better goal.
3. Goals should be for the individual - "Make my boss understand me," probably won't work, because it's not about you. Whereas, "Work on my communication skills" is about you.
4. Action-oriented - "Ponder on the gifts of life" isn't really measurable. Yet, "List 3 things a day I'm grateful for," is achievable.
5. Trackable - Break your goals into edible pieces. "Lose weight" is tough to track, and if you wait until November to begin that goal, you may be disappointed. So instead, "Lose 2 pounds a month," or "Exercise 45 minutes 3 times a week," may be within your reach (remember, keep it positive, so do not say, "Don't gain weight this year").
6. Specific - "Write a novel" may be a worthy goal, but can you do it? How about "January - build an outline, February - set a list of characters, May - break outline into chapters"?
7. Bring Happiness - Set goals that make you roll-out of bed with happiness rather than dread! "Live in joy each day," may bring with it a positive twist rather than "Never be grouchy."
8. Flexible - Remember you have the right to start your day, week, month, year over at any time. Just because you didn't get that outline finished in January doesn't mean you should throw away your book goal. Don't get discouraged - tomorrow is a new day.
Now remember the saying, "A goal not written down is only a wish"? So write those goals down, share them with someone who can "help" you be accountable, rather than "hold" you to accountability. And then begin!
My goals for 2014 include:
Be excited about today and tomorrow
Smile a little longer
Say, "I love you"
Do something uncomfortable
Dance a little (I'm having a Wii dance party for my birthday in January!)
Be calm, remove anxiety
Show gratitude, if only in thoughts and prayers
Be kinder to myself, to my body - I am a walking miracle
To start new means letting go as well. Some suggestions for letting go can be found here.
I'm not sure which streams I may "find myself" in this new year, but I will embrace what comes my way, learn my lessons well, and pack a few of those into my knapsack, and travel on, living -
My New Year's toast to you, my friends - May you be found with a handful of happiness, a simple solution to problems, and comfort in your chaos.
Tuesday, December 31, 2013
Monday, December 16, 2013
Doctor's Visit
This morning I saw my radiation oncologist. I am 8 months post-treatment, and this was my second visit with his staff.
Good news - no news! Nothing could have made me happier. And I did get applause for the 20 pounds I've lost and the "How did you do it," compliments. Living a healthy lifestyle and eating correctly are so important to me, always have been, so moving toward reclaiming me is just good stuff.
My boob is still sore, particularly the region where the surgeries and radiation took place. I have glands and ducts and tissue that take awhile to heal, so I'll continue to be patient, and monitor.
Again and again I will beg you to do your monthly exams and know your boobs, or the boobs of your loved one.
So, 3 months until my next visit! Away I go - loving my breasts and my life!
Good news - no news! Nothing could have made me happier. And I did get applause for the 20 pounds I've lost and the "How did you do it," compliments. Living a healthy lifestyle and eating correctly are so important to me, always have been, so moving toward reclaiming me is just good stuff.
My boob is still sore, particularly the region where the surgeries and radiation took place. I have glands and ducts and tissue that take awhile to heal, so I'll continue to be patient, and monitor.
Again and again I will beg you to do your monthly exams and know your boobs, or the boobs of your loved one.
So, 3 months until my next visit! Away I go - loving my breasts and my life!
(http://www.joyoushealth.ca/wp-content/uploads/2012/10/JoyousHealth_HealthyBoobs_GlobalTV.jpg)
Monday, December 9, 2013
Personalities
So - do you come across as the dew on a spring morning's grass, or as a thunder storm on a hot summer day?
What type of person are you attracted to?
Do your children fit into either category?
Or - is this metaphor too binary? Do we gently touch at sometimes and rain down heavy some days, are we dry on some days, and blustery cold on others?
I've been thinking about this - how I come across to myself, my spouse, my kids, my friends, strangers; as well as in my written language versus my body language or my spoken words.
What type of person are you attracted to?
Do your children fit into either category?
Or - is this metaphor too binary? Do we gently touch at sometimes and rain down heavy some days, are we dry on some days, and blustery cold on others?
I've been thinking about this - how I come across to myself, my spouse, my kids, my friends, strangers; as well as in my written language versus my body language or my spoken words.
Wednesday, December 4, 2013
Beggars
Last Tuesday in class I brought up two words - Homeless and Panhandling - and then watched as the conversation ran away, without any further help from me. My goal was to get my students to think objectively about a very emotionally charged topic - something they all had opinions on. We talked about binary thinking (either-or) and critical thinking (more than 2 sides to the story). It was a great discussion.
Recently an LDS Bishop (pastor in the Mormon Church) dressed up as a homeless man, and then attended his congregation's worship service, to see the reaction of his congregation; he revealed his true identity during this meeting. An interesting concept and quite the conversation starter! (A pastor in Tennessee did similar.)
Many communities are pushing for folks to not contribute money to "pandhandlers" (often showing that panhandling is a scheme and detrimental to the truly needy), rather asking those who give to panhandlers to donate to shelters and other venues that help out folks in need.
I keep thinking about a scripture in the Book of Mormon, "For behold, are we not all beggars?" I know I certainly am - whether it's begging for one more hour of sleep, for this week's budget to go just a little further, for yesterday's snowstorm to be delayed, for my honey to remember to mail a package, for my students to "please turn in your assignments on time," for the light to stay green just a little longer, for the next oncology appointment to be positive. Maybe I'm not on the street corner with a sign, but I am nonetheless dependent on the goodness of others for so much.
I don't want to be deceived, but I don't want to be hardened toward the needs of others.
Mosiah 4: 17-19. 17 Perhaps thou shalt say: The man has brought upon himself his misery; therefore I will stay my hand, and will not give unto him of my food, nor impart unto him of my substance that he may not suffer, for his punishments are just—
18 But I say unto you, O man, whosoever doeth this the same hath great cause to repent; and except he repenteth of that which he hath done he perisheth forever, and hath no interest in the kingdom of God.
19 For behold, are we not all all beggars? Do we not all depend upon the same Being, even God, for all the substance which we have, for both food and raiment, and for gold, and for silver, and for all the riches which we have of every kind?
Recently an LDS Bishop (pastor in the Mormon Church) dressed up as a homeless man, and then attended his congregation's worship service, to see the reaction of his congregation; he revealed his true identity during this meeting. An interesting concept and quite the conversation starter! (A pastor in Tennessee did similar.)
Many communities are pushing for folks to not contribute money to "pandhandlers" (often showing that panhandling is a scheme and detrimental to the truly needy), rather asking those who give to panhandlers to donate to shelters and other venues that help out folks in need.
I keep thinking about a scripture in the Book of Mormon, "For behold, are we not all beggars?" I know I certainly am - whether it's begging for one more hour of sleep, for this week's budget to go just a little further, for yesterday's snowstorm to be delayed, for my honey to remember to mail a package, for my students to "please turn in your assignments on time," for the light to stay green just a little longer, for the next oncology appointment to be positive. Maybe I'm not on the street corner with a sign, but I am nonetheless dependent on the goodness of others for so much.
I don't want to be deceived, but I don't want to be hardened toward the needs of others.
Mosiah 4: 17-19. 17 Perhaps thou shalt say: The man has brought upon himself his misery; therefore I will stay my hand, and will not give unto him of my food, nor impart unto him of my substance that he may not suffer, for his punishments are just—
18 But I say unto you, O man, whosoever doeth this the same hath great cause to repent; and except he repenteth of that which he hath done he perisheth forever, and hath no interest in the kingdom of God.
19 For behold, are we not all all beggars? Do we not all depend upon the same Being, even God, for all the substance which we have, for both food and raiment, and for gold, and for silver, and for all the riches which we have of every kind?
Monday, December 2, 2013
Striplings and Wounds and Scars -
"Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you." ~Unknown
Many years ago two groups of people, coming from different backgrounds, fought constantly. They would battle for a city, then retreat and repair and prepare for the next fight. It became, that even within the cultures, people argued with each other, to the point that they were not watching what was going on outside of themselves. So just when this inside bickering became great and divisive, the original "enemies" prepared to attack the largest cities of these folks.
However, during the times of peace, the men of one of the battling group decided they would live a peaceful life, they no longer wanted to be the ones who would fight, kill, or moreso, shed another man's blood. They made this pact with each other and with their families and their God, and they buried their weapons.
It was at this time when the other group decided to attack these folks who had determined they wanted peaceful lives.
As these people were being threatened, it was determined that something needed to be done to save their families and their communities. So as not to break their promise of not fighting, the sons of these men decided they would go to battle and protect their families from bondage and slavery and ruin. They were anxious about this, but prayed and asked God to give them the strength and direction they would need in battle.
These boys (perhaps between 10 and 20 years old), about 2000 of them, asked a man in the community to be their leader - and he agreed. So these young men, in spite of their youth and lack of training, became good soldiers. They were successful again and again.
After the battles were over, all of these young men returned home, victorious and changed. Not one of them had been killed - they fought, and they were not afraid of death, in fact - their motivator was the freedom of their fathers, the lessons of their mothers, and the honor of their God. They knew "that if they did not doubt, God would deliver them."
However - all of these young men arrived home with wounds - whether visible or not. Images abound of these boys going off to battle, but I have yet to see one of these young men returning home: weary, wounded, victorious, to their parents, siblings, girlfriends. (Just found this one.)
I've been thinking about this story quite a bit these past couple of weeks. Although what these young men did is held up as honorable, I'm sad they went home changed - different from when they left home - perhaps for the first time, losing innocence, gaining . . . what?
What sorts of wounds do we have? How did we receive them? Most of us have stories that surround our woundings, the time we were hurt - physically or emotionally and the outcome.
I have wounds - visible and not. But more than that - I have scars. I believe these young men came home from battle with injuries, but with the help of those who loved them, and the support of each other, the wounds healed and became scars. It is often said that scar tissue is stronger than the original tissue. I'm not sure about the science behind that, but I do know most of my injuries have healed, and I have chosen to use these scars to become stronger, better, and my scars tell the story of the battle and the victory - not loss. I don't volunteer for war, but when battles arise, I rise to the calling because of my scars, because of my knowledge that wounds do heal. Life ain't easy - we're forced into battles we don't often volunteer for, but we can learn from them; if we choose to.
I think of Jesus Christ - most pictures of the resurrected Christ show the scars in his hands. It is with those scars that we are taught He died on the cross, was resurrected, and healed - and we can be as well. Our wounds can be healed, yet our scars are the constant reminder of not only the injury, the lessons, but the fact that we can heal, that life does go on, that we can move forward.
"Every wound leaves a scar, and every scar tells a story. A story that says 'I survived'."
(The story I told? A Ronda'ized version of the story in the Book of Mormon, Alma. Often labeled "The Stripling Warriors." I'd rather think of it as "Two Thousand Strapping Young Men Who Became Strong Because of The Lessons They Chose to Learn.")
Many years ago two groups of people, coming from different backgrounds, fought constantly. They would battle for a city, then retreat and repair and prepare for the next fight. It became, that even within the cultures, people argued with each other, to the point that they were not watching what was going on outside of themselves. So just when this inside bickering became great and divisive, the original "enemies" prepared to attack the largest cities of these folks.
However, during the times of peace, the men of one of the battling group decided they would live a peaceful life, they no longer wanted to be the ones who would fight, kill, or moreso, shed another man's blood. They made this pact with each other and with their families and their God, and they buried their weapons.
It was at this time when the other group decided to attack these folks who had determined they wanted peaceful lives.
As these people were being threatened, it was determined that something needed to be done to save their families and their communities. So as not to break their promise of not fighting, the sons of these men decided they would go to battle and protect their families from bondage and slavery and ruin. They were anxious about this, but prayed and asked God to give them the strength and direction they would need in battle.
These boys (perhaps between 10 and 20 years old), about 2000 of them, asked a man in the community to be their leader - and he agreed. So these young men, in spite of their youth and lack of training, became good soldiers. They were successful again and again.
After the battles were over, all of these young men returned home, victorious and changed. Not one of them had been killed - they fought, and they were not afraid of death, in fact - their motivator was the freedom of their fathers, the lessons of their mothers, and the honor of their God. They knew "that if they did not doubt, God would deliver them."
However - all of these young men arrived home with wounds - whether visible or not. Images abound of these boys going off to battle, but I have yet to see one of these young men returning home: weary, wounded, victorious, to their parents, siblings, girlfriends. (Just found this one.)
I've been thinking about this story quite a bit these past couple of weeks. Although what these young men did is held up as honorable, I'm sad they went home changed - different from when they left home - perhaps for the first time, losing innocence, gaining . . . what?
What sorts of wounds do we have? How did we receive them? Most of us have stories that surround our woundings, the time we were hurt - physically or emotionally and the outcome.
I have wounds - visible and not. But more than that - I have scars. I believe these young men came home from battle with injuries, but with the help of those who loved them, and the support of each other, the wounds healed and became scars. It is often said that scar tissue is stronger than the original tissue. I'm not sure about the science behind that, but I do know most of my injuries have healed, and I have chosen to use these scars to become stronger, better, and my scars tell the story of the battle and the victory - not loss. I don't volunteer for war, but when battles arise, I rise to the calling because of my scars, because of my knowledge that wounds do heal. Life ain't easy - we're forced into battles we don't often volunteer for, but we can learn from them; if we choose to.
I think of Jesus Christ - most pictures of the resurrected Christ show the scars in his hands. It is with those scars that we are taught He died on the cross, was resurrected, and healed - and we can be as well. Our wounds can be healed, yet our scars are the constant reminder of not only the injury, the lessons, but the fact that we can heal, that life does go on, that we can move forward.
"Every wound leaves a scar, and every scar tells a story. A story that says 'I survived'."
(The story I told? A Ronda'ized version of the story in the Book of Mormon, Alma. Often labeled "The Stripling Warriors." I'd rather think of it as "Two Thousand Strapping Young Men Who Became Strong Because of The Lessons They Chose to Learn.")
Tuesday, November 26, 2013
Plans - Thank Heavens for the Future
Last year my only plans were to make it through chemo and radiation, surviving one day at a time, in fact, some days it was one hour at a time. There were hours when I really did not want to live, when the pain was too great to make it through another moment. It's not that I wanted to die, but really, chemo sucks (radiation was awful as well, but did not suck the life out of me like chemo did) - and it will never be my friend - more like a necessary evil, and sometimes I wonder how necessary. The bravest souls in the world are those who have reoccurring cancer and choose to go through chemo for a 2nd or 3rd time. I'm not sure that would be my choice.
Back to plans - my plans were to "make it through." Amen, that's it.
Aaah, how nice it is to be on this side of healing. Although I'm still weak, a little unsteady, have minimal feeling in my finger tips, and have no hair on some parts of my body, I'm healing. I'm losing that chemo weight, exercising, sleeping well, and have made it until this week without a cold (which is amazing with teaching school). I am progressing.
So my plans? Simple things really - visit with some friends who are here from afar, make Thanksgiving pies, eat Thanksgiving pies, create with my sisters, grade research papers, send Christmas cards, go to Snow White with Jenna and Tempest, go to Scott's work party with him (Jenna went last year), do a little Christmas shopping, cuddle a new grandbaby (due Christmas day), teach at UVU next semester, get the rest of my weight off, fit into my pants from last year, go on a trip to the south in the spring. So some plans are specific, already on my calendar in pen, and others are vague - still in the planning or delivery stages. I've found that I can't think or plan too far ahead - the anxiety this causes me is puzzling (because I am such a planner), but I'm mostly OK with preparing for the simple, for now.
I am truly grateful for tomorrow - for the next hour. Sometimes I have to pinch myself (OK, not really) because I feel so fortunate to have that next breath, and life is so good, and tomorrow will be as well.
I have a jewelry kiln! My sister, Paige, and I are making silver jewelry this week. Planning for this new adventure has been a blast - strengthening friendships while also pushing my brain forward -
Back to plans - my plans were to "make it through." Amen, that's it.
Aaah, how nice it is to be on this side of healing. Although I'm still weak, a little unsteady, have minimal feeling in my finger tips, and have no hair on some parts of my body, I'm healing. I'm losing that chemo weight, exercising, sleeping well, and have made it until this week without a cold (which is amazing with teaching school). I am progressing.
So my plans? Simple things really - visit with some friends who are here from afar, make Thanksgiving pies, eat Thanksgiving pies, create with my sisters, grade research papers, send Christmas cards, go to Snow White with Jenna and Tempest, go to Scott's work party with him (Jenna went last year), do a little Christmas shopping, cuddle a new grandbaby (due Christmas day), teach at UVU next semester, get the rest of my weight off, fit into my pants from last year, go on a trip to the south in the spring. So some plans are specific, already on my calendar in pen, and others are vague - still in the planning or delivery stages. I've found that I can't think or plan too far ahead - the anxiety this causes me is puzzling (because I am such a planner), but I'm mostly OK with preparing for the simple, for now.
I am truly grateful for tomorrow - for the next hour. Sometimes I have to pinch myself (OK, not really) because I feel so fortunate to have that next breath, and life is so good, and tomorrow will be as well.
I have a jewelry kiln! My sister, Paige, and I are making silver jewelry this week. Planning for this new adventure has been a blast - strengthening friendships while also pushing my brain forward -
Monday, November 25, 2013
Gratitude -
Last year this week I was so very sick from chemo. My blood counts were down, which meant I was susceptible to any cough, sneeze, touch germs that came my way. My uncle, Pete, and Scott spent this week entertaining me with their shed building antics, in our backyard. On Thanksgiving day Scott and I stayed home - I don't remember much else of that day. The next day Scott went to work, and I went to the hospital for rehydration.
Life does move on - forward for me. And I am grateful for this blessing. I read this thought early this morning, "Grace Always Win; It may look gloomy. you might feel like your world is slowly caving in. life may feel out of control and critics might be predicting your doom...but let's believe that the best is yet to come. it's not a silly cliche but a promise each of us can hold onto. let's go!!" Brought me to tears - truth does that to me.
Thanksgiving week is always emotional for me. As I make a concerted effort to pause and count my blessings I try to stay in the now - being grateful for the present. Yet this week, beginning with the Grace banner has already turned into one of retrospect. My head cold that started on Saturday also figures into this - I'm grateful for a cold! I'm grateful for knowing that all I have is a cold - and I'm grateful for a body that knows how to heal, how to be healthy. I'm grateful for a warm home, for Mentholatum, for cough drops, for clean drinkable water, for a job I can work from home, for warm yoga pants and fuzzy slippers, for plans that can be changed, for hot drinks, soft tissues.
I'm putting my Grace ring back on for the week - a constant reminder that living in Thanksgiving daily really is the winner.
Life does move on - forward for me. And I am grateful for this blessing. I read this thought early this morning, "Grace Always Win; It may look gloomy. you might feel like your world is slowly caving in. life may feel out of control and critics might be predicting your doom...but let's believe that the best is yet to come. it's not a silly cliche but a promise each of us can hold onto. let's go!!" Brought me to tears - truth does that to me.
(https://www.facebook.com/photo.php?fbid=663678120319617&set=a.148698041817630.20991.147241508629950&type=1&theater)
Thanksgiving week is always emotional for me. As I make a concerted effort to pause and count my blessings I try to stay in the now - being grateful for the present. Yet this week, beginning with the Grace banner has already turned into one of retrospect. My head cold that started on Saturday also figures into this - I'm grateful for a cold! I'm grateful for knowing that all I have is a cold - and I'm grateful for a body that knows how to heal, how to be healthy. I'm grateful for a warm home, for Mentholatum, for cough drops, for clean drinkable water, for a job I can work from home, for warm yoga pants and fuzzy slippers, for plans that can be changed, for hot drinks, soft tissues.
I'm putting my Grace ring back on for the week - a constant reminder that living in Thanksgiving daily really is the winner.
Monday, November 18, 2013
Little Knowns About Me -
OK, I was asked to list 11 little known things about me, on Facebook. I started, then realized I'm better at listing if there's an explanation about those items on the list. So here goes -
1. I have a fear of heights. Mostly it's a really bad fear of falling. This summer Scott and I made a drive through a few of Utah's parks. There were 2 places where I was either in tears or sick to my stomach. My reasoning is this - we are but a twist of the steering wheel, a step back, a slippery spot, and the rest is history. I won't hike Angels Landing in Zion for this reason. It would be so easy to fall . . .
2. I am an introvert. I need quiet time. I can be in a group just fine, but then I need a few hours or a day to detox.
3. I like to push boundaries (calculated risks). Life is about progress - either through experiences or education.
4. I didn't learn to swim until I was 40 - I gave swimming lessons to myself as my birthday present.
5. I like clean. I don't like animal hair, dust balls, finger prints, old mail, clutter, footprints on the floor, hair in the tub.
6. I don't like bouncy foods. I don't care for: eggs, jello, gummy treats, string cheese or cheese curds.
7. I use my cancer as my barometer for doing anything or experiencing anything new. Such as - "Ah heck, I've had cancer, this can't be any worse." This makes dealing with difficult situations (such as sitting for 8 hours of chaplain training on Saturday) much easier to handle.
8. Life is so good right now that some days I wonder "what's next."
9. People trust me. I have so many folks who confide in me, often. I keep confidences and respect this gift of trust. I think many of my students think of me as their "aunt/mother," and share with me because of that safety.
10. I am attracted to older men. Always have been.
11. I am a closet dancer. I love movement, motion. In my next life I will be a Riverdance dancer.
12. And one to grow on - I love making friends. I have friends from all walks of life - rich, poor, sassy, calm, religious, atheist, old, young, in, out, intellectual, creative, students, professionals. My friend bucket is always full.
1. I have a fear of heights. Mostly it's a really bad fear of falling. This summer Scott and I made a drive through a few of Utah's parks. There were 2 places where I was either in tears or sick to my stomach. My reasoning is this - we are but a twist of the steering wheel, a step back, a slippery spot, and the rest is history. I won't hike Angels Landing in Zion for this reason. It would be so easy to fall . . .
2. I am an introvert. I need quiet time. I can be in a group just fine, but then I need a few hours or a day to detox.
3. I like to push boundaries (calculated risks). Life is about progress - either through experiences or education.
4. I didn't learn to swim until I was 40 - I gave swimming lessons to myself as my birthday present.
5. I like clean. I don't like animal hair, dust balls, finger prints, old mail, clutter, footprints on the floor, hair in the tub.
6. I don't like bouncy foods. I don't care for: eggs, jello, gummy treats, string cheese or cheese curds.
7. I use my cancer as my barometer for doing anything or experiencing anything new. Such as - "Ah heck, I've had cancer, this can't be any worse." This makes dealing with difficult situations (such as sitting for 8 hours of chaplain training on Saturday) much easier to handle.
8. Life is so good right now that some days I wonder "what's next."
9. People trust me. I have so many folks who confide in me, often. I keep confidences and respect this gift of trust. I think many of my students think of me as their "aunt/mother," and share with me because of that safety.
10. I am attracted to older men. Always have been.
11. I am a closet dancer. I love movement, motion. In my next life I will be a Riverdance dancer.
12. And one to grow on - I love making friends. I have friends from all walks of life - rich, poor, sassy, calm, religious, atheist, old, young, in, out, intellectual, creative, students, professionals. My friend bucket is always full.
Monday, November 11, 2013
Push On - Retreat
Cowboy actor John Wayne said, "Courage is being scared to death - but saddling up anyway." This past weekend I had the honor of spending time with 25 women who saddled up anyway and courageously made it through their breast cancer journeys.
Lifting Hearts is an amazing breast cancer organization here in Utah. We spent time in a gigantic cabin in the beautiful Heber Valley. We ate, laughed, cried, shared, walked, talked, modeled (PJ pageant), crafted, and photographed together. Maya Angelou said, "There is no greater agony than bearing an untold story inside of you." Having the opportunity to share and listen to each others stories, in a language that BC women share, was extraordinary. We didn't have to explain terms such as: port, hormone therapy, Taxol, Tamoxifen, Red Devil, burns, Stage 1/2/3, side-effects, hair loss, reconstruction, self-love, reoccurrence fear, survivor/thriver, pink-sickness, lethargy, 30 lbs, balance, neuropathy, hearing loss, perspective, simplicity, and "Welcome to Holland."
Being able to chat with women of various ages and life stages, about our one common denominator was very helpful. I shared, but mostly I learned from those whose experiences and gained wisdom far exceeded mine.
I now know what tomorrow looks like: hope, gratitude, wisdom, generosity, acceptance, and most importantly - community.
Many many thanks to Kara, Bethanie, Colette, and everyone else for a lovely time.
As Jeffrey Holland said, "Hope on. Journey on."
Lifting Hearts is an amazing breast cancer organization here in Utah. We spent time in a gigantic cabin in the beautiful Heber Valley. We ate, laughed, cried, shared, walked, talked, modeled (PJ pageant), crafted, and photographed together. Maya Angelou said, "There is no greater agony than bearing an untold story inside of you." Having the opportunity to share and listen to each others stories, in a language that BC women share, was extraordinary. We didn't have to explain terms such as: port, hormone therapy, Taxol, Tamoxifen, Red Devil, burns, Stage 1/2/3, side-effects, hair loss, reconstruction, self-love, reoccurrence fear, survivor/thriver, pink-sickness, lethargy, 30 lbs, balance, neuropathy, hearing loss, perspective, simplicity, and "Welcome to Holland."
Being able to chat with women of various ages and life stages, about our one common denominator was very helpful. I shared, but mostly I learned from those whose experiences and gained wisdom far exceeded mine.
I now know what tomorrow looks like: hope, gratitude, wisdom, generosity, acceptance, and most importantly - community.
Many many thanks to Kara, Bethanie, Colette, and everyone else for a lovely time.
As Jeffrey Holland said, "Hope on. Journey on."
Monday, November 4, 2013
Transformation Mantra -
Have you ever read something that you know, beyond a doubt, to be true, and to be clearly written for you? This, today, is my truth.
I am transforming, I am reborn, I am -
Friday, November 1, 2013
November 1 - TGOO
I am soooooo glad October is over! This month has been much more traumatic than I had ever expected. Grief abounding with anniversaries. However, I am continually learning, and more opportunities for internal growth have come my way because of this month's learning curve.
When Scott and I began dating, on about week #3, I met him for lunch at the Brick Oven restaurant. I had a script assembled, ready to share with him - purposefully to tell him that if he knew what was best for him, he'd stay out of my life. I read something like this, "I live life intensely. Life is not simple for me; I examine and evaluate everything that comes my way. I am complicated, and you do not want to get involved with me."
I am continually evolving. I am a work-in-progress. And I'm becoming comfortable with this, and even a little accepting of this. I'm working on dumping the complexity, stress, and anxiety that, historically, have been associated with this part of my personality. This is even evident in my Halloween get-up for last Saturday's party. I have put on a costume 3 times in my adult life, and this was one of them. And rather than stress, worry, wonder what people would think, I embraced this new adventure. I even had a lady at the Mac makeup counter do my makeup! I had my hair sleeked back by my cousin who is a hairdresser. I wore purple tights, a boa, over-the-top makeup, and gigantic earrings. I even put on my dressy chemo-hat, and only thought once about the fact that I'd never worn a hat other than for chemo, until now. I had fun with dressing up. I had fun laughing at myself, acting my part, and letting go.
I am learning life can be simple. Life doesn't always have to be analyzed and evaluated, just accepted for what it is. And this is just what I want.
When Scott and I began dating, on about week #3, I met him for lunch at the Brick Oven restaurant. I had a script assembled, ready to share with him - purposefully to tell him that if he knew what was best for him, he'd stay out of my life. I read something like this, "I live life intensely. Life is not simple for me; I examine and evaluate everything that comes my way. I am complicated, and you do not want to get involved with me."
I am continually evolving. I am a work-in-progress. And I'm becoming comfortable with this, and even a little accepting of this. I'm working on dumping the complexity, stress, and anxiety that, historically, have been associated with this part of my personality. This is even evident in my Halloween get-up for last Saturday's party. I have put on a costume 3 times in my adult life, and this was one of them. And rather than stress, worry, wonder what people would think, I embraced this new adventure. I even had a lady at the Mac makeup counter do my makeup! I had my hair sleeked back by my cousin who is a hairdresser. I wore purple tights, a boa, over-the-top makeup, and gigantic earrings. I even put on my dressy chemo-hat, and only thought once about the fact that I'd never worn a hat other than for chemo, until now. I had fun with dressing up. I had fun laughing at myself, acting my part, and letting go.
I am learning life can be simple. Life doesn't always have to be analyzed and evaluated, just accepted for what it is. And this is just what I want.
On another note - Happy Birthday Tyler -
you are an amazing man, and I am blessed to call you mine!
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| Spring 1981 |
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| Summer 2003 |
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| January 2010 |
Thursday, October 31, 2013
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!
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!
Wednesday, October 30, 2013
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
Tuesday, October 29, 2013
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.
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.
Monday, October 28, 2013
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."
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."
Friday, October 25, 2013
Oct. 25 - Tell Me Lies, Tell Me Sweet Little Lies - NOT
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 -
Thursday, October 24, 2013
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."
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 -
Wednesday, October 23, 2013
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?
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?
Tuesday, October 22, 2013
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:
Read more about the MBC Alliance and its goals from this press release by the Avon Foundation For Women:
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 ResearchMetastatic 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:
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/.
- 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 13th is Metastatic Breast Cancer Awareness Day.
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 13th 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
Monday, October 21, 2013
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 -
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 -
Friday, October 18, 2013
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.
Thursday, October 17, 2013
Oct. 17 - This -
Published on Oct 13, 2013
https://www.facebook.com/realcancerawareness/info
Wednesday, October 16, 2013
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
"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
Tuesday, October 15, 2013
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: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.
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.”
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
Monday, October 14, 2013
Friday, October 11, 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 -
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
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
*** 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
Thursday, October 10, 2013
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)
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!
Wednesday, October 9, 2013
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)
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