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. 

Friday, May 20, 2016

The Beauty of a Scar

I recently had the pleasure of participating in a Writing Group for women who had been affected by breast cancer. It was a very intimate experience working with these ladies and sharing with each other our deepest emotional experiences in our walk with breast cancer. I wrote a few lovely pieces that I'll share at a later time but first I really must share with all of you this magnificent piece written by Gerry Kearney, another beautiful lady in our group who has very generously allowed me to borrow her work. This poem touched me deeply and I think the message it sends can be very valuable to anyone who reads it, not just those with breast cancer. 

I look in the mirror at all of my scars.
I see the one on the breast of the 20 year old
innocent young bride.
Told if it was malignant, the breast would come off
I said, I’d rather die.
An immature reaction to what I thought made me beautiful.
A romanticized vision of a young Juliet lying in repose.

Foolish girl, lucky girl

I look in the mirror and see the scars on my abdomen.
The ones where a scalpel sliced so delicately into the womb
And brought forth three beautiful, healthy sons.
The scars that forced a young woman to wear
the matronly one piece suit in a time of sexy string bikinis.

Vain young woman, self-conscious young woman.

I see the scars above that.
The laparoscopic slits created when
gallstones grew like pearls in an oyster.
But not as magnificent or precious.

Older woman, pain-free woman

I see the scar of the biopsy probe. Its dimple a small basin
catching the water that flows down from the shower spout.
I look in the mirror and see the scars
across my breast and under my arm.
The scars created when the tentacles of cancer
were carved out of my body
Carefully preserving the healthy tissue,
but distorting the remains just the same.

I look in the mirror and see the scars where children lay their little
heads, smelling sweet and delicious,
while grandma reads a bedtime story and sings them lullabies.
I see the scars where they place their hands and tell me I feel “squishy.”
The scars where they ask to see my booboos
and offer a tinkerbell or muppet bandaid.

I look in the mirror and see the scars of a well-loved lifetime.
Scars that brought forth life; that saved a life.
A blessed wife, and mother, and grandma.

Grateful woman, thankful woman.

Never have I read anything that lays out so perfectly our journey from the young woman to the old.  I know that when I look back to the days of my youth I now wish I could go back and shake some sense into that young, na├»ve and vain girl.  We live in a world where beautiful bodies are given more value than beautiful acts and beautiful gestures.  We are constantly looking in the mirror and seeing all of our flaws and using those as the judge and jury of our value and worth.  But our worth has nothing to do with our appearance at all.  Our true worth is weighed solely on our ability to give, to sacrifice and to accept ourselves and others despite our flaws.  Our true strength lies not in our bodies, but instead in the depths of our hearts and our spirit. 
One of the first things I have had to learn to let go of as a woman with breast cancer is my vanity.  Even though I will not be losing my breasts, I have lost control over the changes in my body.  It's difficult to look in the mirror now and see the toll that battling cancer has taken on my body already.  Side effects that cause excessive weight gain, dry skin, dark circles under my eyes, tired muscles and achy bones are now slowly transforming me into this new person that I barely recognize.  There is no going back to that young, vibrant woman I was a year ago.   I have to remind myself every day that even though sacrificing my vanity and pride is probably the hardest thing I've ever had to do, it is okay.  Because my physical body is not who I am.  My true self lies within and that person is still very strong and very vibrant and very much alive. 
I shed so many tears when I read this poem the first time because it brought on a feeling of shame.  It made me want to reverse the clock and go back in time to the days of my youth when I thought my scars were so ugly.  Four pregnancies, two of which were C-sections definitely took it's toll on my body.  I've always been self conscious about my stretch marks, cellulite and scars.  But now when I look at them I see beauty and a small price to pay for a life well lived. 
I've said in several blog posts before that I see the world with a new pair of eyes now.  I have also changed in where I place value.  When I sit and reflect on the things that are most important to me, giving birth to my children is at the top of my list.  They are my greatest accomplishment and my best decisions.  I was often chastised for having too many kids.  I was definitely chastised for having them young.  But, ask me now if I regret that decision!  I'm so glad I had my children young because it allowed me to see them grow up.  And I know how lucky I am to have been able to able to have that experience.  My children are a product of my sacrifices and I wish I could go back and start all over again so I could truly value and treasure every moment I had raising them. 
This poem also hit me in a very difficult way because the one thing I have always truly wanted and was looking forward too is becoming a grandma.  That is one of the hardest things for me to accept about my diagnosis.  I had big plans to be one of the most amazing and wonderful grandmas ever!  It hurts me deeply that I might not get to experience the joy of looking into the eyes of the next generation of my DNA.  But, I'm slowly realizing that no matter what my age or how much time I get, there will always be something I will be missing.  And, I'm learning to be grateful for the things I do have and have had.  Because that is more than some people get. 
I wanted to share this poem because I am hoping that those who read it will take some time to reflect on the things about their lives that matter most to them.  I encourage you to stop looking at yourself in the mirror to gauge your value.  I think you will find that what lies beneath the skin is more amazing than you realized.  We have no control over what happens to our bodies as we age.  But, we always have control of our spirit and our actions.  And, at the end of the day those are the only things that matter. 
When I look out into the world I see so many people wasting so much time and money on vanity.  I was definitely guilty as charged of the same crime.  I spent a good portion of my life worrying about my appearance, trying to stay thin and trying to stay young.  What a waste of precious time. 
I encourage all of you to stop and take a minute to truly reflect on what you would truly want to leave behind when your time on this earth is over.  I know for me I definitely do not want people to remember me for my perfect skin, beautiful hair and flawless body.  Instead, I want to be remembered for being a beautiful human being. 
Don't fight your age or your aging...  learn to embrace it and let go of vanity.  It is a beautiful thing to have lived a life where there are lots of scars to mark a life well lived. 

Friday, March 25, 2016

Finding My Way Home

Considering that today is Good Friday, I've decided it's a good time to talk about Faith and the struggles I have been having in this area since my diagnosis.  This is not an easy topic for me to write about but I think that everyone has times in their life when they must battle their conscience and their faith and what they truly believe.  There are many things that can challenge us and we all have a breaking point.  I definitely reached mine last summer when I was diagnosed.  Now that some time has passed, I find that I am not only on a journey of learning how to cope with this new life as I walk hand in hand with cancer, I'm also finally able to take small steps towards my emotional healing.  And this is slowly happening through the faith and strength of others. 
The loss of my faith is something that has perplexed me really, an unexpected response to my diagnosis.  Whereas many people find themselves drawn closer to faith during times of hardship, I found myself turning away.  It has been bothering me, but it's like that part of myself just completely shut down and I have been struggling to find a way to get it back.  I think that's what happens when you become overcome with bitterness and anger.  I've been having to drag myself through acres of muck to find my way back to solid ground. 
Everyone approaches spirituality differently.  I have always been a person who appreciates action.  There is a lot of truth in the expression, "Actions speak louder than words".  Actions are much more telling of a person's intentions and how they truly feel.  They also strongly represent a person's character.  Even though prayer is a wonderful tool for building inner strength and resolve, true change and miracles occur through our actions.  In many situations, prayer and action must walk hand in hand.  One is for strength, the other for results. 
I have met quite a lot of "casual responders" when it comes to helping someone in need.  If they can squeeze in a quick prayer for you on Facebook during a commercial break during the big game, well then...  they've done their part.  It's a kind of a lukewarm approach to spirituality that is disappointing.  It's not sincere and it doesn't really help.  I have never been able to be that kind of person.  I get it from my dad.  He always taught me not to be a hypocrite to what I believe.  He had a pet peeve with lukewarm acts of faith.  It's the one thing about my dad that has always stuck with me.  I cannot go through the motions of faith if I don't truly believe in what I am saying or doing.  And to be honest, it is the people who have strong faith and do acts of kindness with sincere hearts that always make the most impact on me.  There is something powerful that occurs when you are in the presence of someone who gives without expecting anything in return.  And, it is the best way to help guide people to a place of healing.   
Part of the reason why my diagnosis hit me so hard in the area of faith was primarily the timing.  I was already very angry and bitter due to some difficult circumstances surrounding the death of my mother just a few months prior.  I had lost faith in a lot of people and as a result was beginning to doubt that prayer and action did any good at all.  It seemed like the more I did...  the more I tried...  the harder I got hit.  Eventually, I just shut down entirely.  That tends to happen when you've been beaten down by life.  Sometimes it's hard to get back up, pick up the bat and prepare for another swing.  I think that I decided I was just too emotionally beat down to play the game anymore.  So, once I was diagnosed I just quit believing.  And, it's been bothering me.  It's been bothering me primarily because there was a time in my life a long time ago where faith did save me and my family.  I know there is power in having faith.  And, I know that I need to find a way to get it back. 
So, here comes the interesting part of my story today...  my mom is definitely with me.  And, she's been sneaky.  Anyone who knew my mother knows that she was always very devoted to Mary and the rosary.  She was in the Legion of Mary, she made handmade rosaries, she prayed the rosary often.  She and my father were both very strong believers in the power of praying the rosary and made it a ritual in their lives to pray not only for themselves but for others.  And guess what?  She has been throwing rosaries at me ever since she passed away.  I'll give you an example. 
This past week has been another exhausting hurdle.  I ended up in the ER with a lot of pain and a horrible case of vertigo.  After all of the tests were done I found out I not only had gall stones, but some of these stones had left the gall bladder and were now lodged and causing an obstruction.  So, I was admitted into the hospital where I would spend the next 6 days.  Hospital stays are tough.  The beds are uncomfortable, they don't let you eat, they wake you up constantly for vitals, you're being poked, prodded, evaluated...  it's exhausting.  And, when you have cancer it always makes everything a little more complicated and it takes longer for everyone to decide the best plan of action.  But, by day 5 the decisions had all been made and I was finally going into surgery.  I was ready.  The days had taken their toll and I needed it to be over.  But, life wasn't finished swinging the bat!  As I was counting down the hours to go into surgery,  I got word from my husband that he had an unusual incident of shortness of breath while doing his morning PT test that led to an EKG that was causing some concern.  He was currently being ambulanced to the ER.  Have you ever had one of those moments where you just hit bottom?  This was one of mine.  Instead of my husband being by my side where he had planned to be after he finished his PT test, we were separated.  Neither one of us was able to be there for one another.  It really broke me.  My husband has always been there for me.  I wanted to be there for him.  I began to panic and of course had to make some very quick phone calls to make sure we both had someone with us.  As I was sitting in the hospital bed, I was overcome with emotions and finding myself feeling very alone and scared.  The tears began to fall.  And right at that moment, a woman walks through my door.  She was one of the hospital chaplains.  She came over and asked if I needed prayer.  Yes, I said...  I do.  I cried, she prayed...  The Our Father, The Hail Mary...  and she reached in her pocket and she handed me a little hand made rosary.  As I grabbed that rosary and held onto it, I felt my mom there with me.  I knew that she was there because this is something that my mom used to do herself.  She would make hand made rosaries and she would give them to people.  She found a way to be there with me in spirit even though she could not be with me in body.  I felt such a profound sense of peace in that moment, and just when I needed it most.  And, this woman, who didn't know who I was at all was able to be used as a vessel because of her time and commitment to her own faith and willingness to share it with others. 
I know, I know...  some of you are skeptical.  But, I will tell you that this is not the first time this has happened to me since my diagnosis.  This is the third time that I have found myself at a very low point and I have been lifted up by little signs of Mary.  And, it is definitely my mom.  And, it is helping me find my way back.  That small moment in the hospital room brought me such a sense of peace with my faith that I had thought was gone.  And, I think if I don't listen, my mom will probably continue to find ways to throw rosaries at me until I do.  :)  Anyone who knew her knows that she was a stubborn woman.  She never gave up on anyone she loved.  She isn't going to give up on me, not if she has anything to do with it! 
As the day progressed I continued to be amazed by the generosity and compassion that I was shown by the hospital staff and I was reminded once again of the power of action.  There were a lot of these types of people around that day in large quantities, all thinking how they could do something to make things a little easier for us both.  I have always admired the doers.  The people who don't just say they care but they show it in small acts of kindness.  It all started with a nurse who felt bad that I was going into surgery while my husband was in the ER.  She started a process to find a resolution.  When I came out of surgery/recovery, I found myself being wheeled to a new room.  The staff had gone through quite a lot of hula hoop jumping to make sure we were both placed in a hospital room together when they found out he would be admitted overnight for observation and further tests.  And, I was so amazed that they had done this for us.  We were both worried about each other and they found a way for us to be together.  What a wonderful end to a very unbelievably stressful day.  There were so many examples of faith going on in that hospital that day.  People of action always amaze and inspire me.  And you know what...  those are the prayers that work.  Ones backed up with action.  I was not only healed of my ailing gall bladder, in many ways all of these individuals helped me to once again take another small step forward in healing my faith. 

If you think that visiting people in the hospital, praying with people when they are in need and taking the time to do a small act to make someone's life a little easier isn't important, I can tell you without a doubt that you are wrong.  The only way to achieve miracles is by our own actions.  I'm pretty sure that God expects us to get up and do the work that needs to be done.  He gives us the power, all we have to do is use it. 

As we go into Easter Weekend I will be spending time reflecting on the struggles of our week.  But, I will also be appreciating the small sacrifices of others that helped me once again survive another speedbump in my walk with cancer.  I am learning that there are some really good and sincere people in this world.  I find myself continuously blessed to continue to cross paths with some of them.  Sometimes they are strangers, sometimes they are friends, sometimes they are family, but no matter who they are, the world is a better place because of these people.  If you find someone like this in your life, hold on to them tight.  They are a treasure to keep.  And, make sure to show them some gratitude. 
I am now recovering from surgery and feeling better.  My husband is okay.  I'm surrounded by my wonderful family who always take such good care of me.  I am truly blessed and I am grateful for what I have.  I am grateful for the many sacrifices people have made for me to help me survive my cross that I've had to bear and will continue to bear.  I can think of nothing better to reflect on than this on Good Friday. 
I hope that all of my friends and family have a very peaceful Easter weekend.  I hope that you find some small miracles to help lift you up as I have.  And I wish all of you so much peace and love.