Thursday, February 8, 2018

I hate the "P" word!

It's been 31 months since my Stage IV Breast Cancer diagnosis.  Yesterday I came home from yet another trip to the hospital for my monthly injections and prescriptions.  This is a difficult time for me right now because my last scan showed a small 7mm new lesion on my spine.  It's just a small lesion but it also means that I'm no longer what we call NED (No evidence of disease).  It also means I get to be scanned every two months now to keep an eye on it and praying that it doesn't progress  any further.  Progression is a word that is generally associated with positive things.  But, in the world of MBC it's a horrible word.  None of us want to hear the "P" word!

I've been having a lot of sleepless nights thinking of what may be lying ahead.  It's a waste of energy I know but I think it's only natural to allow my mind to occasionally go to that dark place.  I've been doing pretty well for the most part on my front line treatment.  I've had great quality of life so far despite the side effects.  It's hard to imagine a time where things won't be so easy.  Definitely even harder to imagine a time where I am not here at all.

It truly is a miraculous thing that I am alive today.  Research and modern medicine have given me the gift of time.  Sometimes I am overwhelmed with emotion because I know I am living on borrowed time.  Every day is a gift.

I've been reflecting on how much my life has changed in these last couple of years.  If I was asked to encapsulate my experiences since my diagnosis with one word that word would be...  LOSS.  

A loss of self, a loss of hope for the future, loss of normalcy, loss of friends...  many, many friends.

Cancer loves to take.  It feeds on you in bits and pieces until one day you look at yourself in the mirror and see a complete stranger.  Cancer has definitely humbled me in ways that is impossible to explain to anyone who hasn't experienced it themselves.  I am humbled to have been given the gift of time.  I am also equally humbled that even though my body is slowly breaking down, my spirit remains strong.

In my advocacy work I have met hundreds of men and women that have enriched my life with their stories, their friendship and their genuine presence.  I have also experienced the impact of losing many of these beautiful people to breast cancer.  Sometimes when I lie awake in the wee hours of the morning, images of them begin to swirl through my mind.  Haunting images of dozens of people who have now passed on but left behind tiny messages for the living to embrace.

I see my pal Jimmie who sat in the passenger seat of my car on a road trip while knitting one of her famous Jimmie hats.  A hat that she gifted to me at the end of our trip.  Jimmie was kind, generous and always made everyone around her feel at home and at peace.

I see Judy.  She's dancing on the dance floor with a big smile on her face.  I only knew her for a few short months before she passed.  But to this day I still remember her smile and her determination to live her life on her own terms.  Cancer be damned!

There was Sharon.  A wonderful spunky lady who joined me on a mission to set up an on-line support group for women above the age of 40 who have been diagnosed with MBC.  Starting this group made her so happy.  It was a small piece of her that she left behind that continues to grow.  She passed away within a year of starting it but I still maintain this group in her memory.  We call ourselves the Golden Oldies...  ;)

I see Natalie, Jill, Cynthia and Dee.  My Casting for Recovery pals.  All of us suited up in our fly fishing gear with big smiles on our faces.  We were all so happy to be out enjoying something normal together like fishing.  We laughed together, we cried together and we were women on a mission to live no matter what life threw our way.

I also see the two Joan's and my roommate Marie.  We were all definitely living life to the fullest on a cruise to the Bahamas.  Oh boy did we all have a good time!  We danced, we laughed, we ate a lot of food, drank cocktails, drank wine.  We tucked our troubles away and just enjoyed spending time together.

I see Sharon and Theresa, two of my fellow Community Connector buddies who just wanted to be an advocate for others.   I think of Sharon every time I see an emoji.  She was the emoji queen of our group.  Therese was quiet in her determination to make a difference.  They are both greatly missed.

And the stories never end...  there are dozens more.  With each loss of a member of my large circle of friends all living with Metastatic Breast Cancer I am continuously humbled.  It obviously brings to the surface the truths I like to try and ignore.  That one day it will be my turn.  I am both blessed and cursed to be forced to face my own mortality.  There is beauty and bliss in ignorance.  It's hard to live life with hope when you know that some things are not meant for you and forever out of reach.  On the other hand, because I know my time is limited, I don't hesitate to reach as high as I can for those things that enrich my life and the life of others.

Even though I feel an immense amount of loss from the passing of so many friends, they all had a powerful impact on my life.  They gave me the gift of courage.  Courage to get up every day and do the best I can.  Courage to try and leave behind a legacy of living that will haunt those I leave behind with a message of love, kindness and perseverance.  Without their influence, I'm not sure I would be handling my diagnosis as well as I am today.  Without them I would be much more afraid of what lies ahead.  There are lessons to be learned from the dying.  I recently watched a video where I heard this expression: 

"I no longer worry about how long I will live but instead on HOW I live."

What we leave behind is the most important thing.  When I take the time to stop and really think about what I want to leave behind it is not money or things.  It's memories of time spent together.  Having fun with the people I love.   I find that it is important to add into my life time for laughter, good times and selfless moments that lead to great rewards.  I have quickly decluttered my life and narrowed it down to only those things that are most important to me. Living life simply and slowing down the pace has allowed me to see many important things that I was once missing.

Since my diagnosis, here is what I've learned:

We are not in control of anything.
Life should be lived authentically.
Just because someone is dying that doesn't mean they are no longer living.
There is strength and wisdom to be gained with acceptance.
The three most powerful words I've learned:  Let it go!  Let me say that again...  LET IT GO!!

It amazes me how we hold onto things that keep us from living a full and happy life.  I wish I had learned to do that when I was young and healthy enough to truly embrace life more fully than I have.  I spent a good portion of my life worrying about what people think.  Letting fear dictate my every move.  Being forced to face one of the biggest fears we all face, death, has empowered me to truly understand how important it is to just let go of things that really don't matter.

So, yes...  buy the shoes, eat the cookies, drink the wine, dance in the rain,


Go out and live...  truly live your life.

Monday, August 21, 2017

Summer Blogging Challenge!

Once again I look at the calendar and realize it's been a very long time since I've written on my blog.  But, I guess in some ways it's a good thing.  I have been busy living and just haven't had much time to spend on writing.  But, life is calming down and I'm looking forward to getting back into my writing again.  And, what better way to start than by accepting this Summer Blogging Challenge by another blogger to answer a series of questions.
  If you are also a blogger and would like to join this challenge then head on over to Nancy's Point to find out how to participate. 

And, here we go... 

1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

I was diagnosed stage IV DeNovo in June 2015 at the age of 46.  DeNovo means that I never had early stage breast cancer.  I have a type of breast cancer called Infiltrative Lobular Carcinoma which is almost never able to be seen by Mammogram because it grows in strings and mimics dense breast tissue.  The only silver lining that I had with my stage IV diagnosis is that I am ER/PR+ with mets to bone only.  There are many new medications available for hormone positive breast cancer.  Knowing that I have many treatments available definitely gives me hope.  However, knowing that ILC is not as common gives me stress!  There is not as much research devoted to ILC as IDC.
Hearing those words "there is no cure" is probably the most difficult and terrifying thing I have ever experienced.  In the beginning all I could think about was death and had the attitude that my life was over.  It's now been a little over 2 years since my diagnosis and I am amazed at how well I have accepted this diagnosis and have found ways to live fully despite the daily struggles with side effects.  If you look at the stages of grief, I experienced every single stage.  If someone had told me in the beginning that one day I would feel happiness and joy again I would have scoffed at the idea.  My life is hard, very hard...  but with every loss I have tried to fill those gaps with new ways to live my life to the fullest.  I manage to find joy in the little things and appreciate every moment. 

2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

Well, this is a hard one to answer.  People have no idea what to say to a person who has been diagnosed with a terminal disease.  There is always this awkward pause when someone finds out and they fill the need to fill that silence with something/anything that shows how they feel.  I think the most shocking thing said to me was, "I'll miss you when you're gone."  I know the person who said it had very good intentions, but it was just the wrong thing to say.  I think sometimes just a hug would do.  Sometimes saying nothing is the best thing if you don't know how to put your emotions into words. 
For me, the most outrageous thing is not what people say but the people who suddenly disappear from your life without a word.  For me that hurts much more than the awkward platitudes and fumbled words.  At least those people are trying and for that I am grateful.  Not everyone is equipped to handle this diagnosis.  I'm still trying to learn how to make my peace with the why. 

3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

All of those things that people say that are meant to be hopeful but only drive the dagger deeper into your heart!  Such as... 

"You can beat this!"  ~ Just don't...  don't...  don't say this to a stage IV patient.  It puts pressure on us to try to beat something we can't beat. 
There is so much pressure for those who are diagnosed with breast cancer to jump aboard the pink warrior train and be a survivor.  But I know that unless I die of something else, I will not survive breast cancer.  This is a fact.  No amount of pink washing, fighting, praying etc...  is going to change this.   It's exhausting trying to live up to the Cancer Warrior image that people expect.  Sometimes we need to put down the pom poms and just rest from it all. 

4. What is something you want others to know specifically about breast cancer?

Mammograms are not always effective in diagnosing breast cancer so doing those self check exams are so, so important.  I discovered that the left side of my breast felt firm and went immediately in for an exam.  It was discovered that I had stage IV breast cancer that had gone undetected by mammogram for several years.  Know your body and do not hesitate to go in for a check-up if something doesn't feel right.  Don't rely only on mammograms.  I had no idea that stage IV existed until I was diagnosed.  I also think every woman needs to know the risks of breast cancer returning so they can be prepared.  Knowledge is power and sugar coating the truth or refusing to acknowledge that it can happen puts women at risk. 

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

I don't worry about recurrence obviously but I do worry about progression of my disease.  My worries are never with myself but instead with my husband and children and how they will cope after I'm gone. 

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

"How has cancer changed you as a person?"  I hear this all of the time.  It has changed how I live my life without a doubt.  I have many limitations physically now, so I've been forced to make changes in order to cope.  I do see the world through a different set of lenses.  I recognize more clearly the things that don't matter.  I let things go so much easier than I ever did before.  I don't think cancer has made me a better person, just a more realistic one.  If I said that I was never bitter, angry or jealous I would be a liar for sure.  In the back of my mind is always the question...  "Why??"... 

7. What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

I actually haven't read any.  :)  But I recently bought a book called The Bright Hour:  A Memoir of Living and Dying and hope to get to it soon. 

8. Besides your family, where do you turn for emotional support?

I have some of the best friends a lady could ask for who are all my rocks.  I'm also in some very good on-line support groups and spend a lot of time with the ladies in these groups.  I have my own support group for women aged 40 and above that also have MBC.  Moderating this group is my way of giving back.  When I was first diagnosed I had so much support.  I was able to bounce back onto my feet again pretty quickly as a result.  Not everyone has this kind of support so I try to make it available to others wherever I can.  Our group is called:  The Golden Oldies  Cute right??  ;)

9. How many cancer blogs do you read and why do you read them?

When I was first diagnosed and I was plundering around the internet doing research, I came across a woman's MBC blog but she unfortunately had passed away six months prior.  I spent many hours reading through her posts and found her words to be very comforting and inspiring.  I was a book review blogger at the time and finding her blog inspired me to start a blog about my own walk with Metastatic Breast Cancer.  I have found blogging to be very therapeutic and hope that it will help educate others about this disease.  Aside from following Nancy's Point on Facebook, I just haven't had the time to explore other blogs.  But, I would love to have an opportunity to mingle with other breast cancer bloggers. 

10. Do you call yourself an advocate? If so, what drives you?

I am definitely an advocate.  I volunteer as an Ambassador for Living Beyond Breast Cancer.  I attend symposiums and try to learn as much as I can to bring back to the women in the support groups I follow and moderate.  Making sure that women have access to accurate knowledge and quality support is very important to me. 

Friday, February 24, 2017

Sitting on the Sidelines

Wow...  it has been a really long time since I've written on my blog.  For whatever reason,  I just lost my voice for a while.  That's the way it goes though.  Life throws a few punches and you find yourself needing to hunker down so you can protect yourself.  It takes time to find the courage and strength to get back up again and get on with living.  The holidays were particularly tough for me this year.  I just felt misplaced, pushed aside and discouraged.  My new life of having to learn to sit on the sidelines can be a real Debbie Downer for sure.  Sometimes what a person needs is a swift kick in the pants.  A gentle reminder not to be too ungrateful for what you DO have.  After taking some time to reflect on my life I found a way to once again look beyond all of the negativity and find my way back to that place of acceptance.  I'm having to find a way to avoid those things that trigger sadness.  And, each time it happens, I take notes so that I can be stronger and prepared the next time it happens.  It takes a lot of work to stay away from the pull of negativity. 
When I think about what women in my situation used to face just a decade ago, it is a quick reminder that I am truly blessed and lucky to still be alive today.  Ten years ago women very rarely lived longer than 2-3 years after a stage IV breast cancer diagnosis.  It shows you how far we have come in research that I am able to look towards any type of future at all, even if it is going to be shorter than I hoped.  That one thing that I've been given is so much more than so many others were given before me and for many others who have more aggressive cancers.  Yes, this miracle comes with crappy side effects and a loss of many things I miss.  But, the fact that I am sitting here today able to look towards the potential for years ahead of me is not something I will ever take for granted no matter how hard or difficult the journey.   
I am still in the process of re-inventing my life.  I am saying goodbye to relationships that no longer work.  I am saying goodbye to old hobbies that are now becoming quite stressful and difficult to enjoy.  I'm saying goodbye to my hiking boots and my clothes and shoes I can no longer wear.  I am saying goodbye to the past I can't change and letting go of the future I can't control.  My focus is only on today, the present. 

 To my dismay, I'm saying goodbye to my memory!!  Yes, those who deal with me every day know that I have to be reminded constantly of every little thing.  Mom will forget!!  :)  Luckily we are all learning to develop a sense of humor about it...  mom gets teased a lot. 

I am learning some very important and invaluable life lessons.  One of those lessons is that living is accomplished in many different ways.  Just because I have many doors closing, that doesn't mean that I can't turn around and find new ones to open.  Learning how to live again when I know my life will be cut short no matter what I do, is so much harder than people realize.  Especially when the life you were living is no longer within your grasp.  Many people give up or fall into despair trying to continue being that person they were.  But, an important lesson that I have learned with this diagnosis is acceptance.   That person I used to be is in many ways gone.  Holding on to what I can no longer have only makes living harder and makes me bitter.  I must allow those doors to close and pour all of my energy into new hobbies, new tasks and new goals that allow me to enrich and grow into the new person I need to become to find joy again and to live a full life.   
For me, everything I do now revolves around my personal well being and my physical well being.  I've had to say goodbye to people who are toxic.  I don't have the energy to fight or argue.  And, that's not how I want to spend the years I have ahead.  I am finally saying goodbye to comfort food, sugar and all those things that are causing me to gain weight due to my lack of mobility.  I have to conquer this!  I have no choice.  I want and need to be able to be active.  I have to do whatever I can to ensure that I can enjoy life.  Mobility is important and I'm learning that it truly is a full time job to combat this one thing that is keeping the things I could be doing slightly out of reach.  I have very little energy for anything else right now.  But, that's the way it has to be. 
I hate sitting on the sidelines.  I like to be involved in things.  I don't want to sit and watch other people living their lives while I just watch.  But, that is exactly how I have been feeling.  But, when I stop to reflect on this, I do realize that I have come to appreciate the beauty that life has to offer from just sitting and watching others play the game of life.  One of those beautiful things is that I get to meet many other people that I likely would have never met or known who are also sitting on the sidelines right along with me.  And, it's not just people with MBC.  The sidelines is a place full of wonderful people of all ages, races, religions.  They are the children who aren't old enough to play and the elderly who are too fragile.   They are the people with other types of diseases and physical challenges all sitting right there with me.  All of us have had to find a way to live despite our inability to participate in those things that aren't within our abilities.  It's inspiring to be there with them.  These people are the true conquerors in the world.  The ones that persevere despite the struggles and hardships.  The ones that offer hope to what many would view as hopeless.  We empower each other and teach each other what is still valuable and important.  We help each other find a way up that treacherous mountain that would otherwise be impossible to climb alone.  I value and treasure these relationships and all that they have done to enrich my life.   
I have met and lost so many MBC sisters/brothers since my diagnosis almost 2 years ago.  Each goodbye is a blow to the heart and hits very close to home.  Each loss is a gentle reminder of my own fate.  But, as I walk along hand in hand with these men and women I now find myself empowered by their strength.  I am definitely inspired by their courage when it comes time to accept that it's finally time to stop fighting and let go.  We all dread that moment.  None of us wants to leave this earth.  But, acceptance of that fate is the only way to be empowered to live.  Accepting this fate means closing the door and moving forward. 
I am very proud of where I am today.  My life is so very hard but I'm finding balance and finding a way out of the muck each time I get stuck.  I'm doing this by saying goodbye to the old me and hello to the new person I am becoming. 
I am still here and I am going to LIVE...  I will continue to live until I can't.  I am hopeful that I will face the end of my life when it arrives with grace as so many of my MBC sisters/brothers have already done.  I will be thinking of all of them as I power forward and conquer each battle as it comes.  I will continue to live for them.  It is the only thing I can think of to honor their memory. 

Sunday, January 1, 2017

Just Keep Swimming!

Yep, this is me as I face a new year living with MBC!! 

**Snicker**  Now that I've put a smile on your face...  let's talk about resolutions.  :) 

I do adore the character Dory!  I can relate to her in so many ways.  Well, I think all of us can in one way or another.  We've all had times in our lives where we can relate to the concept of having to get up every day and continue to swim even when we want to give up.  Life is hard.  And, just when you think it can't get any harder, it does.  This is when we have to rely on our inner strength, our inner spirit to carry us through.  It is also proof that the strength of our spirit is our most valuable asset.  If you nurture your spirit and keep it healthy and strong, it will help you through some of the toughest times.   Little Dory's determination and inner strength helped her to carry on despite her challenges.  It is a simple but powerful message and one that I now have as my primary goal each and every day. 


Not a day goes by that I am not told how good I look or how happy I appear.  Apparently I make battling cancer look easy.  But, it's not easy at all.  My life is a continuous struggle both physically and mentally.  Sometimes I wish people could look at me and truly see how much I struggle.  It's easy for people to take a quick glance in my direction and make a judgement call that all is well.  But, it takes a lot of strength and perseverance to get up every day and take a stab at normalcy, when normal is never truly within my grasp.   There is a price to pay for being kept alive by these amazing medications I take.  And, that price is sometimes a hard thing to accept.  I feel like I am now forced to sit on the sidelines of life.  Being unable to fully participate in the things I used to enjoy gets harder and harder as the days pass.  My brain gets stuck in a pity party sometimes as I think of all of the things I used to be able to do with ease. 

I used to be a jogger...  but now, I'm intimidated by a flight of stairs.
I used to be an avid reader...  but now, I'm lucky if I can find the energy to finish a book at all. 
I used to be a hiker...  but, my achy feet will not allow me such challenges.
I used to love to travel...  I still do, but it is becoming increasingly difficult to enjoy due to my physical limitations. 
I used to have control of my health and weight...  now, I dread stepping onto a scale and I feel a sense of defeat that I can't control what is happening to my body. 

These are just a few of the many issues I face each day that threaten to kill my spirit, make me want to give up.  I miss the person I used to be.  So much so that sometimes I am tempted to stop treatment just so I can have that person back for a little while, despite the risk.  And then I feel guilty that I would put myself at such a risk just so I can have a few minutes of normal again.  It feels selfish, but I want it anyway.  I want to hike and climb a rigorous trail with my kids like I used too.  I want to climb up a mountain.  I want to run!  Oh, how I miss the rush of adrenaline through my veins after a nice jog. 

As I face the New Year I don't really have any resolutions.  Making resolutions for better health and a more fulfilling life???   Oh, how I wish that were possible!  :)  No, that is not really within my grasp.  So, instead, I'll just get up every day and...


While I'm swimming, I will try to find small moments of joy, small victories in which to celebrate and small accomplishments to feed my spirit.  I will do this as a sit on the sidelines of the life in which I used to be able to participate fully.  I will do this even if it is hard.  Giving up has never been in my nature.  And I refuse to let cancer take that part of me when it's already taken so much. 

Despite all of my struggles, I do have so much to be grateful for.  My cancer meds have been working incredibly well.  I can't tell you how blessed I am to be going into my twentieth cycle of my first treatment plan with no progression.  I am also still holding a No Evidence of Active Disease status!  Even my oncologist is amazed at how well I've been doing.  Yes, I am incredibly blessed and lucky to be one of the few to be able to walk side by side with "the stable boy".  Lol...  a little joke between me and my MBC friends.  We all want a date with the "stable boy".  :)  I know that this is something not to take for granted when so many of my MBC brothers and sisters are struggling with treatment failures and progression.  I have been given time that is not given to everyone.  I will strive to do my best not to waste it.  It is a gift, even if it's not ideal. 
I am also definitely blessed with a beautiful, strong and amazing family.  My husband, children and son-in-law...  gosh, they make me so very proud.  Each one of them holds unique talents and strengths.  They are all very giving, very talented, and I have no doubt they will leave positive footprints behind as they continue on their own journeys through life.  It is what every parent wants, to see their children succeed and be good human beings.  All of my children are exceptional people.  They are my greatest accomplishments. 
I am continuously grateful for the strength of perseverance of my husband.  It's not easy to be a caregiver.  He has to carry a much larger load on his shoulders now.  He has also lost that normalcy we used to have together.  It's not easy, and sometimes it shows.  But, he always manages to pull himself back together and does what needs to be done.  His commitment to me has not gone unnoticed.  I love him more each and every day.  I am very blessed and lucky to have him in my life. 

I know that I am not alone in my struggles.  So many of my friends and family are also struggling with illness and loss.  And, to each one of you I hope and pray that you continue to find strength in the coming year to face the difficult challenges of life with perseverance and courage.  I know it seems silly to compare your challenges to a cute little fish named Dory...  but, it really does fit the challenges we face every day...  don't ya' think?? 

Just keep going... 

just keep trying... 

just keep marching on... 

just keep swimming! 

Wednesday, October 12, 2016

The Power of Time

As I reflect on the concept of time and what it means to me,  the first thing that comes to mind is how much of it I have probably wasted throughout my life.  And, I'd be willing to bet that most people who have been diagnosed with a chronic or terminal illness probably feel the same way.  It isn't until our time on this earth is suddenly limited in some way that we are able to see clearly how valuable our time becomes.  16 months ago, when I was diagnosed with stage IV Metastatic Breast Cancer, I was suddenly transformed into a person who was always putting things off into a person who is now getting up every day with a new mission...  to live fully!  This didn't happen quickly, however.  It was a long journey for me before I was able to make peace with my diagnosis and find the strength and courage to live again.   
When I was first diagnosed, my world came crashing down around me.  The only thing I could think about or see was death.  In my mind, my life was ending.  I fell into a dark place of sadness and depression.  I became desperate, angry and afraid of facing the unknown future that lied ahead for me.  Treatments, side effects, pain...  there couldn't possibly be anything positive for me to look forward too in the years that lie ahead.  I remember thinking to myself that there was no way I would ever be able to accept this diagnosis.  I felt that there was no hope for me to ever find happiness and joy again.  I felt like a robot just going through the motions of life, but not really seeing the point in participating.  When you feel like your life is over it's hard to know how to take the next step.  For me, time had suddenly run out. 
Luckily, I am surrounded by so many beautiful people who stepped into my life as soon as they found out about my cancer.  They gave me the time I needed to grieve.  They listened to my fears, supported me, cried with me and held me up.  Eventually I began to slowly reach inside myself and find the strength to finally get up on my own.  I began to hold on to those little bits of courage and use them as my fuel to get up and face life one step and one day at a time.  I am forever grateful for the people who were there and are still there for me each and every day. 
It didn't take long for me to begin to reach out to other women like me who are also getting up every day and trying to live despite a terminal diagnosis.  The more I listened to their stories, the more alive I began to feel.  It was through their stories and how they embraced me with support that I began to see that there was indeed plenty of life for me to live.  If they could do it, so could I. 
I also began to see that something was terribly wrong in the world of MBC...  our voices and our presence has somehow been made invisible over the years and many are living their days in isolation as a result.  It saddened me that so many were in their final years on this earth and had little to no support.  After a while I realized that I knew exactly how I wanted to spend whatever time I have left.  I wanted to be an advocate for more research and support for those who share my diagnosis.  Helping others has always been my salve for anything that ails me.  And, helping to advocate is definitely time well spent! 
I started slowly by creating this blog so I could share my story.  I joined groups...  I listened...  I took notes...  until eventually I found myself thrown into a world of advocacy that has now begun to enrich my life in ways I never thought possible.  And I have learned the best way to create change is by sharing my story and allowing others to walk along beside me as I hold hands with cancer. 
Just recently I completed training with the Living Beyond Breast Cancer Organization as a Community Connector.  I flew to Philadelphia both nervous and excited to meet all of the women I would be working with on this team.  What I gained from this training was truly empowering.  I found myself surrounded by the strength of women who had all faced a breast cancer diagnosis.  Some of us were survivors, some were currently in treatment, and then there were those like me who would be in treatment forever.  All of us had our own story to tell that was unique and different.  The only thing that wasn't different was our determination to do our part in providing support to those in need.  And, all of us want to help pave the way to a cancer free future.  When I came back from this training, I felt renewed in spirit, empowered and realized that time is not necessarily my enemy.  Not if I choose not to waste it, not if I use my time to leave behind a better future for my children.  All of us went home from our training having gained a few new friends, a new purpose and a shared motivation to support and educate others who are stricken by this disease.  When you look at this picture you can see that cancer doesn't care how old you are, your ethnicity, or how much you want to live.  It takes who it wants, when it wants and it shows no compassion.  It takes a village to conquer cancer.  And, we are stronger together! 


A couple of weeks later I was given an opportunity to participate in a retreat for stage IV breast cancer.  This retreat was sponsored by The Casting For Recovery charity and it was the first retreat that was comprised solely of only stage IV patients.  A long time ago someone decided to use their knowledge of Fly Fishing as a way to bring those who have been diagnosed with breast cancer back into nature as a way of healing.  I didn't know what to expect when I signed up for this opportunity, but what I got out of this weekend was invaluable.  I was completely blown away at the generosity and compassion that these wonderful individuals had for me and the other women who attended.  This was so much more than an opportunity to learn how to Fly Fish.  It was a lesson in living!  It was a reminder to us that our time may eventually run out, but not today.  Today, we can learn something new.  Today we can reach out and find joy and peace by embracing the beauty that only can be provided by nature.  I learned that friendships can still be made, love can still be given and it is possible to still have fun.  I also learned that people are taking notice of us and our cause.  And when they do take notice, they embrace us with support, compassion and their time.  Time spent together with friends, family or even strangers is never wasted when we do it with compassion, love and open arms.  I wonder if the people who created this charity are even aware of the difference they have made in so many lives by the simple act of sharing something they loved with others. 

As I reflect on the last 16 months of my life, it has been one filled with pain, fear, anxiety and loss.  But it has also been filled with love, compassion, new friendships formed as well as the re-kindling of old ones.  It has been a year of having to accept that there are things I will no longer be able to do and that I have limitations.  But, at the same time there are many opportunities open for me to fill those holes with something new and just as valuable and enriching.  I can no longer hike the mountains, but I can walk along the river.  And, not only can I walk the river, I can grab a fishing pole and learn a new way to embrace my love of nature.  I may not ever be able to go back to the old Kathy I was 2 years ago but I can re-invent myself in a way that strengthens me and brings value to my life and others.  I can live...  fully... 

If I wanted to send a message out to others who have also been diagnosed with MBC it would be this:
Don't give up Living!  Don't let fear of the unknown guide your day to day decisions.  Your life has value and it always will until your journey in this life is over.  But, most of all...  Do not let cancer steal away your joy and happiness.  Cancer has a way of taking things away from us and we can't control what it does to our bodies. But cancer cannot have our spirit, our determination, or our ability to conquer and win all the small battles that come with this diagnosis. 
As far as what time means to me now...  my honest answer is that I no longer worry about how much time lies ahead for me.  Primarily because time will run out for us all no matter who we are or what we do.  I just want to be able to look back onto my life and say, I lived with no regrets. 
Time is irrelevant for those who live for others.  Because when you live to enrich someone else's life, you have no regrets.  That is the one thing I have gained since my diagnosis.  I feel so much joy when I am surrounded by selfless people.  I don't have to find joy on my own because they bring it to me through their selfless acts.  It is contagious and it makes me want to do the same. 
It reminds me of the movie Pay it Forward...  I have always loved it's simple message of how kindness is contagious.  If only we all woke up every day with only one mission:  To share love and kindness.  Some people do this exceptionally well...  I've had the honor of meeting quite a few of you.  These are the true angels.  They aren't up in the heavens out of reach...  they are standing right beside us all of the time. 

Monday, July 25, 2016

Planes, Trains and Automobiles! aaaaaaannnd Ships... :)

I will not die an unlived life.
I will not live in fear
of the unknown.
I choose to inhabit my days,
to allow my choices to open me,
to make me less afraid,
more determined to overcome;
to loosen my chains
until they become a gentle embrace,
a comfort, a support.
I choose to be present,
to live so that which came to me encased in a cocoon
goes to the next as a butterfly,
and that which came to me as a butterfly,
goes on as the bearer of my love.

This is a poem that I wrote a while back when I was taking a writing course for those whose lives have been affected by Breast Cancer.  At the time I wrote this I was beginning to come full circle from the standpoint of early diagnosis when I did not believe I would ever be able to feel happy and content again to almost a year later when for the first time I realized that my life was not over.  There is still so much I want and can do.  I have now moved into acceptance and it has brought me a surprising sense of peace.  I know that one day my body will eventually succumb to the cancer lurking inside it, but until that happens I will live each day fully and will do my best to love my friends and family so well that hopefully my presence will continue to thrive and bloom through memories of our time together.  I thought it was an appropriate time to share this poem with all of you because this has been a summer with much to celebrate! 
What are we celebrating??  Well, for the first time since my diagnosis last July 2015 my PET scan showed that I am currently NED!  That means:  No Evidence of Disease
For stage IV cancer patients we know that NED is only temporary.  One day my cancer will progress.  It does mean, however,  that for now my cancer is in a deep sleep, not spreading and this is definitely something to celebrate.  NED is a little different than stable.  Stable means that they still see areas of active cancer but perhaps it's smaller or shrinking.  Or, maybe it's still the same as it was before but nothing has changed.  NED means they do not see any evidence of active cancer.  So, my medications are working brilliantly for the moment.  We have no idea how long this will last so we're going to take advantage of the time I do get and treasure every single moment!  This is just a gentle reminder that I am not Cancer free.  I will never be in full remission.  There will be progression at some point.  But, not today!  :) 
The second thing we are celebrating this summer is the big silver anniversary.  Yes, my husband and I are celebrating our 25th Wedding Anniversary this year.  Last year I was afraid I wouldn't see this day.  This year I am not only celebrating that I am here for this one but also because my oncologist believes that there is a very good possibility for many more.  I sure hope so. 
My husband and I celebrated our 25th anniversary in a big, big way.  We went on a 12 day cruise through beautiful Alaska.  Our first stop was the beautiful city of Vancouver where we got on our ship. 

Lookie, Lookie!  There's our ship:  The Celebrity Millenium

Our vacation continued with a stop in Ketchikan, The Icy Strait, Juneau and finally Seward.  From there we went on a 4 day land tour to see even more.  By the end I was exhausted, had swollen feet and nearly had to crawl home on all fours.  But, it was so worth the trouble.  We saw whales, eagles, bears, glaciers...  we rode in boats, planes, trains, buses and taxis...  we did it all...  and we loved it all...  but mostly we loved...  being together. 
What a precious memory to have shared all of these beautiful moments with the man I love.  My best friend.  He takes such good care of me and I so wanted to be able to give him the gift of my presence. 

I hope we get to do more of these trips together.  But, even if we don't, I couldn't have planned anything more perfect for our 25th. 
I really wish I could share each and every wonderful moment of our vacation with you but to be honest, the entire trip was absolutely perfect. The weather was warm and gorgeous and clear every single day.  A photographers dream in Alaska.  Here is my man behind the other woman in his life..  CANON...  lol... 

Every outing, every stop and every meal was a memorable event. It was almost as if someone somewhere had carved out these few weeks just for us. It was full of rare and memorable moments not only for us but for those around us.

It was as if the powers that be realized that we'd been through enough hell over the last few years and decided to grant us a reprieve. And, we were grateful for every moment of happiness we gained together on this trip. It was needed so badly and it was very healing.  It reminded me of another poem I wrote in our class:   

Healing is
Difficult but not impossible
It takes great courage and strength

Healing is
Accepting the Unacceptable
To continue living when it seems pointless

Healing is
Realizing you've never truly lived
Life is more visible now

Healing is
Knowing that you still have worth
You are able to still give, share and love

Healing is
Understanding your true purpose
Life is not ending, It is only changing

During our trip we had a conversation that I'd like to share with all of you.  Basically we asked each other, "Would we be sitting in Alaska right now if I had not been diagnosed with stage IV Breast Cancer last year?"  The answer is...  probably not.  If it's possible to have a silver lining to my diagnosis, then that is it without a doubt.  We have made a commitment to stop waiting to do those things we really want to do together.  If there is somewhere we want to go we will go now.  There is no we'll do that someday...  only, let's do it now!  I want to let people know how extremely important it is to take advantage of the present.  I know that I am going to die sooner than I want.  I have motivation that those who live not knowing the when or the how do not have.  And, in some ways I do feel lucky, because I do not want to waste any more time.  I wish that everyone would take time to stop and do the things that they dream of doing.  Because as I've said many times before, we are all terminal.  No one knows how much life lies ahead for them.  So, start living today!!  Please don't wait... 
We are both in a pretty good place right now.  We have accepted what we cannot change and are trying to make the best play we can out of the horrible hand of cards we've been dealt.  I will never have my old self back entirely, but cancer will not take my perseverance to live despite what it has taken from us both.  And, I will strive to be happy and not allow it to take my spirit.  It's so easy to throw up your hands and say, what's the point?  Well, for me the point is to leave something good behind.  Good memories, happy moments and a whole lot of love! 

Monday, June 13, 2016

Taking it One Day at a Time...

What if Today I was cured of my Cancer?

I might Climb a Mountain.

What if Tomorrow was guaranteed?

I could once again be driven by hope.

What if I could be that woman I used to be?

I would Love fiercely
Do without hesitation
Live life to the fullest!

Why did living have to become so hard?

This week marks the end of year one since my Stage IV Breast Cancer diagnosis.  It has brought on some very painful emotions.  It's an anniversary that will never come with celebrations.  Instead, it will only serve as a marker for one less year in however many I hope to get before my journey in this life ends.  When I think about how quickly this year has gone by it only makes my anxiety rise as I know that time will more than likely not be my friendly companion.  It's now working against me.  I want more, so much more. 
I wish that I could say to all of my friends and family that at the end of my first year of battling this disease that I am doing wonderful, life is bouquet of roses, I'm feeling hopeful and looking forward to the years ahead, that I am happy and full of joy.  I wish that I could say with confidence that I think I can fight this battle for as long as the medications I'm taking continue to work.  But, that wouldn't exactly be the truth.  My life has become incredibly difficult with each day offering its new challenges as the medications I am on slowly tear down my immune system and my mobility.  There are many days that I feel like I want to stop taking the medications that are making it so hard for me to have the quality of life that I so desperately miss and just let nature take its course.  The only thing that keeps me going really are the most amazing friends and family I have around me to offer the much needed support I must have to find the courage to continue despite the side effects.  All that I do, I do for my family and my friends and because I am not ready to let go of any of you.  None of you can fix me, but you can lift me up and you've been doing an amazing job.  I still need you, I will always need all of you. 
I've had to learn to let go of so much in the last year.  The one thing I have had to let go of the most is learning not to look too far ahead to the future.  I handle my life one day at a time, one catastrophe at a time and just take what small joy I can find from the smallest accomplishments.  I find that I no longer feel joy in the things I do for myself.  I find more joy when I am able to bring it to someone else.  I'm more prone to give and definitely more prone to be forgiving.  As long as I am able to at least bring that to other people, I think I can manage to stick around for a while. 
I have big plans in the next year to take advantage of whatever stability I get from my medications.  I plan to become more involved in MBC advocacy.  My goal to make sure that I do my part to make sure all women and men are educated on the truth of metastatic disease and breast cancer at all stages.  I also want to provide comfort to those who are in my position and help be a stepping stone for them and provide whatever hope I am able.  And, I definitely want to do my part in raising funds for research.  Research is the key...  the MBC community is the least funded and it is desperately needed. 
Other than that, I will spend quality time with my family.  I will continue to live one day at a time.  I will continue to battle each challenge that the days ahead will bring with all of my strength and perseverance.  Giving up has never been in my nature, so I don't suppose I'm going to start now.

I'm going to take the liberty of answering some questions for all of you.  Here goes... 

How are you feeling? 

Emotionally I am frustrated, scared, anxious and worried but also at the same time there is acceptance.  I cannot change it, fix it or get rid of it,  so I have chosen to move forward with the cards I have been dealt.  I have chosen to live my life fully despite my cancer as much as I am allowed.  Physically I struggle.  I have chronic muscle and joint pain that makes it difficult to move as quickly as I would like.  I have back pain, rib pain, hip pain and my feet hurt.  Some days are better than others but let's just say...  the heating pad is the best invention ever!  And, my newest problem...  blurry vision.  It comes and goes.  Sometimes I can see the TV clearly, sometimes I can't...  it's weird...  and aggravating.  But, I do what I can and then I stop when I can't. 

What can I do to help? 

The best way to help is to continue to support me with prayer.  And, to do your best to try to put cancer away and treat me as you always have.  Just with lower expectations when it comes to going and doing.  No, I can't spend the day shopping.  No, I can't share a bottle of wine with you.  No, I can't go on long walks and anything past the hour of 5:00 in the afternoon is probably not a good idea because I will likely fall asleep.  I might have to cancel plans at the last minute so please be forgiving.  It truly isn't you, it's me!  Providing dinners are nice because I am always tired.  Not having to cook in the afternoons is a blessing when it's the time of day I'm usually the most tired.  Other than that, just take time to check on me and see how I'm doing.  Don't expect me to always have positive answers.  My life is a daily struggle and I need to be able to be honest with you about my pain and my fears. 

What is your prognosis?

I can't ever answer this question unfortunately.  All I can say is that I've lost many friends in the last year to this disease.  In my support groups, we've lost over 130 beautiful souls since I was diagnosed last year.  Some of them had very little time but others had gained up to 10 years.  A few even longer.  All I can say is that I hope to be the best case scenario.  But, cancer will decide and let us know in it's own time.  Please do not worry about my prognosis.  Death comes to us all and it will come for me when it's ready and when I've completed all that I'm supposed to do.  That is true for everyone. 

I am very open about my diagnosis.  I am not afraid to talk about it and it no longer upsets me like it used too.  Please feel free to message me if you ever have any questions, concerns or just want to know how I'm doing.  I'm happy to talk to you.  And, it does make me feel better when people take a few minutes to stop and give me a personal message or phone call.  It means more to me than you could possibly know.  Being present for someone in need is the best gift you can ever give. 

So, let's close the book on year one shall we!  I am now ready to march into year two with the same steady perseverance.  I hope it's a good one but as always...  One day at a time.