Through the Eyes of A Caregiver

When I was diagnosed with breast cancer, I learned all about it, from researching, googling, reading, talking with others and experiencing the illness through my body, mind and spirit.  I know more about breast cancer and its effects on women and families than I ever wanted to know.  But it has made me who I am today and for that, I am grateful.  I learned much about myself and the inner strength that I have come to rely on in my life.

Now that I have two family members battling Alzheimer’s and Dementia, my research has begun again in earnest.  This time it’s not so much about the body, but more about the mind and as the caregiver this time and not the patient, my brain works overtime as does my patience.

The mind baffles me with its twists and turns with these diseases.  In my research, I came upon the video below which brought me to tears and humbleness.  As caregivers, we may lose our patience when asked for the umpteenth time the same question or when we are unsuccessfully trying to reassure an anxiety-ridden loved one whose brain is captured by a riddle.  But we never know what they are enduring as their brains muddle through moment to moment, grasping and disconnecting at will.  Their brains only deal with the present moment and that is their reality which changes.  Talk about truly living in the present and working on finding peace in every single moment!

Perhaps this will give you a little insight as it did me.  If you are a caregiver or love someone with Alzheimer’s and Dementia, please connect with me.  Just as it helped me when I endured breast cancer, I believe that as always our connections only make us stronger.

Shine On!

xo

Start Your Day Right!

How do you begin your day?  Do you wake up to the clanging of an alarm clock or a pet/spouse/child pestering you?  Do you woodenly trudge to the kitchen to get coffee?  Or do you smile as you pull back the covers and land your feet on the floor?

I’m an early riser myself.  I adore the quiet of the morning for it’s when I get the most done.  My mind is alert (after my coffee of course) and I can feel the possibility of a new day dawning ahead of me.  Sure, there are obligations and responsibilities that I attend during my day, but there are also pockets of time in which I indulge and find the little things that make me smile.  And I smile simply because I am here…now…today…in this very moment…and I am grateful for the gift of today.

For you see, even the roughest of days, I do not regret having and believe me, I have endured many a rough day as I know we all have in our lives.  But it is in surviving those rough days that I can treasure the days in which my heart is happy.  Even in those hard days, I always made sure to find a small moment or two where I could feel my heart no matter if it were sad or glad.  I could remind myself that I am here and be present for myself and my family.

So today, let’s start at the very beginning ~ gratitude for being here, for breathing, for moving, for thinking and reading, for loving, for peace, for joy and for you being you and me being me. ♥

We can begin at any moment, so let’s start now!  You are worth a new beginning!

Shine On!

xo

Solitude

Solitude

By Ella Wheeler Wilcox  

Laugh, and the world laughs with you;
Weep, and you weep alone;
For the sad old earth must borrow its mirth,
But has trouble enough of its own.
Sing, and the hills will answer;
Sigh, it is lost on the air;
The echoes bound to a joyful sound,
But shrink from voicing care.

Rejoice, and men will seek you;
Grieve, and they turn and go;
They want full measure of all your pleasure,
But they do not need your woe.
Be glad, and your friends are many;
Be sad, and you lose them all,
There are none to decline your nectared wine,
But alone you must drink life’s gall.

Feast, and your halls are crowded;
Fast, and the world goes by.
Succeed and give, and it helps you live,
But no man can help you die.
There is room in the halls of pleasure
For a large and lordly train,
But one by one we must all file on
Through the narrow aisles of pain.

I found this poem today and thought it may ring a bell for some of you as the first few lines are known to many.  I’ve been reading a lot of poetry these days and writing it as well.  It is amazing to find such solace in the words of others.  Do you feel the warmth of human connection in the poem above ~ the commonality of man?

What is your favorite poem?  Do you write poetry?

Shine On!

xo

Feeling Defeated?

“Being defeated is often temporary,

giving up makes it permanent.”

– Marilyn von Savant

I have had many challenges in my life as have we all.  Few of us here on Earth have remained unscathed by disappointments and moments of feeling defeated in one way or another.  So it comes as no surprise that we need to find a way through the sadness and often raw painful feelings of defeat.  Sometimes, try as we might to not quit, situations are out of our control and we are powerless to stop the journey.  It is then, at that precise moment, when we need to decide our fate.  It is in our hands, this is our life and we ultimately remain in control.  It remains our choice in how we deal with whatever ‘it’ is in our lives that is not working as we wish.

But to give up, to quit, to not work at what ‘it’ is to improve the situation, that makes it permanent.  I am not a quitter.  No matter what life has thrown at me, I have gotten up and gone on, many times taking baby steps in the process for I had no other way.  But it is innate in me ~ to see the sunshine through the rain and to look for the rainbow through the clouds.  I know not where my strength comes from, but it is within me ~ as real as my eyes are blue.  I cannot be anyone but me and you cannot be anyone but you.

Sure we can change when ‘it’ arrives whether stealthily on little cat feet or as thunderously striking lightning.  It is a choice to fall to pieces and pick them up or to remain broken permanently in defeat.  What I have learned is this is YOUR LIFE to choose as you wish and you must continue to change and evolve as life goes on.  We grow through our defeats, we gain perspective, strength and peace by enduring ‘it’ and I believe that is the journey of life.

Continuing on with peace, love and happiness in our hearts not only heals ourselves, but others as well.  It does not serve us to remain angry and resentful when we endure ‘it’ and remain defeated.  It locks up the heart and soul which simply want to shine.  I know it is hard when we feel defeated.  Many times, through breast cancer, through relationships and through disappointments and family troubles, I have know defeat.  But I know that this too shall pass.  Life will go on and I plan on being there every baby step of the way.

So if you are feeling defeated, take a moment to assess ‘it’ and find the gift in the defeat.  Growth, strength and love come from ‘it’ and you will find that what you endure now will give you gifts you couldn’t possibly imagine in the future.  Let’s connect, hearts and hands as we baby step on this path ~ hold each other up with respectful kindness and loving hearts.

Love is an ability that needs practice.  Self-love is the key and you hold that special key right now.  Isn’t it time to unlock your heart and soul and live again?

Shine On!

xo

Pink Post Gratitude to Lisa Boncheck Adams

Every person has a story. So, too, does each chair.

There is comfort in routine.

Some people are superstitious. Sometimes they want the same chemo nurse, the same appointment time, the same chair. “If it is working don’t mess with it” applies to many things about treating cancer.

I am always thinking about continuity and the stories that objects tell. I’ve written twice about the tape measure my plastic surgeon used to measure me before surgery. I’ll post those pieces again this month.

Whenever I sit in a chair in a doctor’s office I think about all of the people who have sat in that chair before I have.

Each person has a story. So, too, does each chair. That chair is the starting point for this piece from 2011.

………………………….

“I think so too”

That chair you’re sitting in?
I’ve sat in it too.
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Radiation. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.

That feeling you’re having?
I’ve had it too.
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.

That day you’re dreading?
I’ve dreaded it too.
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” Anniversary day. Chemo day. Surgery day. PET scan day. Decision day. Baldness day. The day the options run out.

Those reactions you’re getting?
I’ve had them too.
Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments. Tears. Avoidance.

Those side effects you dread?
I’ve dreaded them too.
Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Mouth sores. Fevers. Anemia.

That embarrassment you’re feeling?
I’ve felt it too.
Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Asking the grocery line folks to “make the bags light, please.” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on. Holding on to the bannister for dear life. Passing out in public.

That fear you’re suppressing?
I’ve squelched it too.
Will this kill me? When? How bad is chemo going to be? How am I going to manage 3 kids and get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? What is worse: the disease or the treatment?

That day you’re yearning for?
I’ve celebrated it too.
“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year” day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.

That hope you have?

I have it too:
More research. Easier access. Targeted therapy. Effective treatments. Better quality of life. More options. Longer life. Less toxicity. Fewer guesses.

Ultimately, someday, for my children or grandchildren perhaps: a cure.

Don’t you think that would be amazing?
I think so too.

** I am so moved by Lisa’s story and this post that I had to share ~ thanks for reading.  I think it makes no difference whether you are fighting breast cancer like we have or any other illness.  We can bond together to heal…that’s the most important piece of the puzzle.

Shine On!

xo

I Remember You

The Power of Presence

A few weeks ago, I was in my local garden shop.  It’s a place I enjoy ‘getting lost in’ which translated for me, means that I enjoy walking around the grounds and store which include outside and inside plants along with numerous thoughtful trinkets to buy.  I find it to be a peaceful place where I can wander and enjoy the pretty gifts, flowers and fauna which Mother Nature has bestowed on our world.

I was lost in thought when I saw him from far away.  It was a man that I hadn’t seen in 7 years, but who meant the world to me.  It was my oncologist.  The man who healed me from the breast cancer which ravaged my body, whom I continue to thank because I am still here, able to be a good wife, mom, daughter, friend and person to everyone I meet.  Dr. M was wandering around the store as well, looking at some potted plants.

I hadn’t seen him in 7 years because my medical insurance changed and I had to change doctors because of it.  I remember crying when I had my last visit with him because he was such an amazing doctor with whom I had connected so well.  He was different.  He always took the time needed with his patients and his bedside manner was impeccable.  He was well known in the cancer patient world as the Doctor Who Never Gives Up.

I was talking with one of the workers in the store whom I knew when I spied him again.  I was barely listening to what she was saying as my mind was whirring.  I longed to talk with him and to thank him, to show him that I’m still here.  But how in the world do you do that when you are not sure he remembers you?  Dr. M. has countless patients and surely in 7 years, he has seen countless more since I left his practice.  Would he feel accosted if I were to walk over to him to take the opportunity to thank him?  He probably doesn’t remember me for I don’t resemble the girl he once knew.  And really, why would he remember me at all being that he’s had so many patients in his long career?  Who am I to think that I’m special?  But I do want to thank him, even if he doesn’t know me.  How do you tell someone thank you for helping you to live without sounding like an idiot?

All these thoughts and more were swirling about my brain as the worker I was standing with was talking to me.  Suddenly I looked up and he was in front of me.

“Good morning.  I’m sorry to interrupt, but I wondered if you could help me,” he said to the worker.

“Sure Dr. M, what can we do for you today?”

“Well, I need to send flowers to my wife, but before we do that, I must take a moment to say hello here,” he said as he turned to me.

He held out his hand and as our hands touched, he pulled me into a hug.  “I’m so happy to see you looking so well,” he said to me.  I was befuddled.  I held onto him in an embrace as tears began gushing down my cheeks.  The worker looked on, astounded by my reaction and not understanding the circumstance.

“How did you know it was me?”

“I knew it was you from across the room.  That’s why I came over.”

“But how did you recognize me?  I don’t look anything like that girl whom you treated.”

“But you do.  You never stopped smiling.  You always smiled, my only patient who always smiled even during chemo.  I knew your smile.”

Shyly, I smiled at him, remembering back over the years when I was almost daily treated at his office.

“It’s been 7 years, can you believe it?  I can’t believe it’s been so long.”

“I know, a long time, ” he said gently as he smiled down at me.  I still held onto him.  I couldn’t help it.  Even now in telling you this story, I have tears rushing down my cheeks.

Turning to speak to the worker who continued to look amazed at the scene before her, I explained, “I was diagnosed with breast cancer back in 2001 and Dr. M was my oncologist.  He healed me.  My insurance changed and I had to leave him 7 years ago and I haven’t seen him since, but (as I turned to look at him) I’ve always kept you in my heart Dr. M.  You gave me back my life and I won’t ever forget what you did for me, for my family.”

“This one, she gave me a run for my money.  She kept me up at night trying to figure out how to heal her.  She was a tough one to heal,” he said to the worker in explanation.

Looking down to me, “You see, I keep you in my heart too,” he said as he released me and patted his heart with his hand.

“I can never thank you enough,” I said honestly to him.

He smiled and replied, “You already have.”

The worker, sensing it was time to step in, broke the spell and asked him what he’d like to send and they began to talk.  Before he walked away, he patted his heart and I patted mine in return.  I knew that our connection, no matter how much time passed, would be there.

I dried my tears and began walking around the store again by myself, lost in my thoughts, astounded that he’d taken the initiative and sought to say hello to me.  I was amazed that he remembered me, that he knew who I was even after all this time.

My heart felt so full in that moment.  I truly don’t know if I can explain to you the gratitude which pours out from me as I write to you.  But I know that moment was a keeper, a moment that I shall not forget.  And as I went about the rest of my day, I realized that we never know whose hearts we touch for a lifetime.  The kindness shown to a hurting soul is never ever forgotten and there are most certainly Angels here on Earth.  I know, I’ve met them.

Shine On!

xo

 

Don’t Quit

This one’s for me today…and for you as well.  My favorite poem and best reminder:  Don’t Quit!

When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but don’t you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don’t give up though the pace seems slow –
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor’s cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out –
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you’re hardest hit –
It’s when things seem worst that you must not quit.

 ~ Unknown

Shine On!

TGIF!

xo

The Right To Fight Like A Girl

Keep Calm and Fight Like A Girl

I wasn’t sure if I was going to enter the fray this morning, but I can’t help it.  I’m drawn, like a moth to flame today.  My heartfelt thanks to my dear friend Florence who wrote The Right To Fight as it has spurred me on to write as well.  For you see, it’s a touchy subject and although I’m not one to pursue it too much, I must today so please allow me to go on or you can choose to simply pass me by ~ it’s ok.  The post will be read by those for whom it is intended.

Death is a subject that is controversial as you can see by Bill Keller’s recent article in the New York Times click here to read.   It’s personal ~ the way each individual reacts to it and deals with it.  For breast cancer survivors (I, myself being a 12 year survivor), it’s emotionally charged when we read an article about how an individual deals with her diagnosis, her treatment and how she reacts to her disease.  Florence has written a great post which I will not repeat.  Please make sure you read how she has reacted to the recent article by Mr. Keller.

Instead, I prefer to focus on Lisa Adams click here to visit her site.   For when I read her About Page  I was stunned by our similarities:  we shared Memorial Sloan Kettering as our hospital, how our original diagnosis’ were much the same (although I had 6 lymph nodes with cancer) and it was my right breast and her left one which had the cancer.  We endured the same chemotherapy treatments ACT, yet back in 2002, my treatments were every 3 weeks and not every 2 weeks.  I endured 6 weeks of radiation, where she had 1 week less.  We both lost and regained our menstruation cycles after chemotherapy as we were young when diagnosed.  I was diagnosed at  34 years old;  Lisa was 37 years.  We both had salpingo oophorectomies (ovaries surgically removed) which of course, plunges young women, including Lisa and me, headlong into menopause ~ speaking for myself, since I’d already endured menopause as a side effect of the chemotherapy, only to have my period return which was hormonally hard to deal with let alone physically, mentally and emotionally, what was one more final round of menopause?  Heck, I’d already lost my hair, my dignity and my figure let alone my breasts.  What was harmful in losing one more thing that could be affecting my cancer prognosis?

But Lisa’s cancer, for whatever reason, came back and metastasized.  Mine didn’t.  It’s not that I still don’t have that possibility in the back of my mind because I’d be lying if I said that I don’t think about it.  Every 6 months when I’m tested at my oncologist’s, I’m reminded that cancer can still be lurking inside my body.  It doesn’t help when there are aches and pains which happen occasionally either as they tend to wither my resolve to stand firm in my thinking that I will live forever cancer-free.

Lisa’s public journey through metastasized breast cancer is new to me as I had never met her before nor visited her website.  But I highly applaud her perseverance, her integrity and her drive to lift the veil and to share what’s really going on behind the pink-ribboned spectacle of breast cancer.  Much talk is about prevention and early detection, but rarely do we read/hear about the women in the trenches who are battling death daily.  My friend Jenn was such a warrior who lost her battle a few years ago.  It was Jenn who told me through a medium that one must know her limits at the end of her life and to make sure that I knew what I wanted.  I never forgot that message nor the one that told me that my scans were clear, clear, clear and that I now walked for 2 ~ me and you.

I believe we all have a right to choose how we deal with our imminent death (if we are given such a gift) ~ we can choose like Keller’s father-in-law to go peacefully or we can choose like Jenn and Lisa to battle with a fierceness known only to few.  Whatever you choose, I stand for you and I fully defend your individual right to choose.  There is no right or wrong way to die, it’s a personal matter.   I heartily applaud Lisa’s courage in sharing her journey with us.  My heart holds a heaviness for all she is enduring as well as her family and all the others out there in our great big world who are dealing with dis-ease and the ending of life as we know it here.

Shine On!

xo

P.S.  See below for posts about Jenn…Happy Birthday Jenn (Jan 13 she would have turned 38)

Bonding-with-strangers

Spirits-and-Music

I-walk-for-two

GOAL!

HIKE!

You know how in football, before the goal, they say HIKE and the play begins?  Well, that’s where I am ~ I love this card because in answering the Daily Prompt’s questions it fits perfectly.  So here are my answers.  Feel free to comment below and answer these questions as well!  I’d love to hear about you too!

When you started this blog, did you set any goals?

To be honest, I set out to just try to blog in the beginning.  I wanted to share what I’d learned from enduring breast cancer as I was a celebrating being a 10 year survivor!  To me, it was an awakening that I was still here even after all I’d endured.  I wanted to write a book, but I felt like what I was writing was riddled with jumps in storytelling.  It didn’t flow properly.

The idea of a blog, a little daily tidbit, appealed to me.  So I simply set out to write often about whatever was pertinent to me that day in hopes that someone out there in this big world would find some type of comfort and connection to it/me.  I wanted to find and forge a community of people who would connect and enjoy life.

Lift each other up, empathize when needed and inspire each other ~

connecting with our strengths and developing our weaknesses.

Have they changed at all?

Certainly they’ve changed.  But the core is still there.  I believe that we are all connected and I love the safe sense of community which bloggers enjoy.  As I wrote above, the blog has developed as time has gone on.  Now with Inner Hotshot University, I’m playing with connecting our strengths and developing our weaknesses by simply taking the commitment to do one thing every week to stretch out of our comfort zones.  I’m not a professional.  I just want to inspire you to continue to learn, to create the life you love living, to appreciate your life and to be grateful.

I started out as Misifusa’s Blog until the name The Presents of Presence came to me and then I changed it.  Eventually I may be expanding…♥♥♥

I am inspired by you all ~ I learn from you ~ and I am so very grateful for your presence in my life!

Share your story!

Shine On!

xo

Daily Prompt: Goals

When you started your blog, did you set any goals? Have you achieved them? Have they changed at all?

http://dailypost.wordpress.com/2013/05/22/daily-prompt-goals/

Be the One that Did!

All The Woulda-Coulda-Shouldas Layin’ In The Sun,

Talkin’ ‘Bout The Things They Woulda-Coulda-Shoulda Done…

But All Those Woulda-Coulda-Shouldas All Ran Away And Hid From One Little Did. Shel Silverstein

Talk is cheap ~ how many times have you heard that phrase?  Probably more times than we’d like to hear it, right?  Well, I’m learning that the hard way.  I’ve been wanting to expand my life for awhile now.  I’ve been floating and not really doing anything substantial with my life.  I know, part of you may think that I’ve been really busy which I have and part of you may think that I’ve not done enough.  Well, you are both right.  But now things are about to change for me.

I am embracing change and facing some fears ~ and it’s not easy.  It’s uncomfortable to step outside of your comfort zone.  In fact, it’s darn scary.  I feel like I have elephant-sized butterflies doing the samba in my stomach.  That’s what happens when I get scared or nervous.  Does that happen to you?  It’s like I feel like I”m going to throw up ~ I get that nauseous ~ but lucky for me, I never actually throw up because it’s the one thing I hate to do.  In fact, I hated it so much that I only threw up once during 6 months of chemotherapy when I was battling breast cancer!  I can be a really determined and stubborn gal when needed. 🙂

Anyway, last week I mentioned the idea of  IHU and many of you wondered what in the world I was talking about!  Click here to read it!

IHU ~ Inner Hotshot University

I created it on the fly, the name just popped into my head!  But I’m thinking that perhaps some of us could brush up and strengthen our inner hotshot and allow that sparkle to shine again in our lives!  Embrace that uniqueness that is you!  Be the light in the darkness ~ use our strengths and develop our weaknesses!  Do what scares us and stretch out of our comfort zones!

Let those butterflies enjoy a mambo number without falling to pieces!

What do you think?  I mean, we could sit here and talk all day long about the woulda-coulda-shoulda’s or we could try to find one thing that scares us and do it every week!  Would you do it?  How about if I double-dog dared you?

So my idea is that once a week, we post a challenge to ourselves to stretch out of our comfort zones.  You can just comment below and tell us or even just commit to doing one thing if you don’t want to reveal what it is.  But the key is that you must be honest and let us know if you did it by the next week!  And if you did, how about sharing how it went?  How you felt after you did it?  What do you think?  Is anyone interested?  Perhaps we could cheer eachother on?  Hold hands while we all jump off of the diving board into the crystal clear pool of life!

You have the power to Be the One That Did!

But wouldn’t it be fun to be the ONES that did?

Let me know if you’re up for the challenge!

We’ll start soon!

Shine On!

xo