By His Grace

Psalm 34:18
18 The Lord is near to the brokenhearted
    and saves the crushed in spirit.

In our house, in our home, God is present and made His presence known in a big way while Keith made his long transition home.  The God I felt during that time is the God I seek today with the knowledge that I too, saw His work, His grace, and His love.  While I’ve never doubted His leaving my side, it is only through Him that I find the strength to endure the loneliness.  He has kept me from dying a spiritual death and gives me the strength to carry on.  I must say Amen for His promises.

I don’t expect everyone to have the same faith that I do but I hope that God, however He manifests himself to people, that they feel something bigger than themselves.  If we allow for this in our lives, the doors of life and opportunity are everywhere we look.  If we wake every day with the thought that today I promise something good for myself, the heavy weight of disappointment in our lives (whether from illness or accident or mean-spirited people) can be managed and logically put in a place where it needs to be, and not a constant gnawing at us that will eat away every energy cell that we have.  I have allowed that to happen to me from time to time but find that if I listen, if I truly listen to my heart where my God lives, I can manage and enjoy the good things in life.  Like family.  Like friends.  Like nature.  Something good for myself is waking up and saying “Thank you for another day”.  It’s appreciation of one’s self and appreciation of others that I believe make us stronger human beings.

My vacation in Florida was wonderful.  To come face to face with people who I have interacted with for 4-1/2 years through cyber space was and always will be a highlight of my life.  You would not imagine that internet friendship could be built with the same intensity that in-person friendships create.  What is beautiful about these friendships is that there are never any expectations from each other.  We just are.  We just love each other as if we are family.  We totally get each other.  Some are patients, some are caregivers and somehow we overlap each other so well that cancer (even through tragedy) takes a back seat when it comes to being together.  One of my favorite quotes is:

“Friendship is born at that moment when one person says to another: “What? You, too?” I thought I was the only one.”
-C.S. Lewis

I wish I could see myself ten years from now.  It seems I need to continue to grab those energy cells one by one still and live in the moment and today, I am very happy to do that. I want to make measurable (to me) strides that are significant in the hopes that by doing this, I can help others to do that too.

Next week one of my goals will come full circle and I can’t wait to share it with you!

 

Goodbye 2015

Hello 2016! 

To_VID8854night will be only be the second New Year’s Eve I’ve spent by myself in 55 years. I don’t mind really; I plan to make myself a halfway decent home cooked meal, and count my blessings for what I have to celebrate.  And I know, though I cannot physically feel him, Keith will be holding my hand.

Gratitude!

To those who read this blog, thanks for always encouraging me to continue.  It’s been a year since I started writing here and it has helped me a lot to deal with the grief of losing my husband and in the process I share these thoughts as honestly and openly as possible.  While sometimes it may prove to be too much information, they are such raw feelings when they make their way to paper for whomever chooses to read.  I’ve always been a writer and that was the one class that I excelled in during school.  It comes easy to me – easier than speaking because I can pause when I want to and just type away and go back and edit my many run-on sentences.  I’m glad the grammar police haven’t found their way here … yet!

I want to thank my on-line friends for being here for me 24/7 and for those of us who have built amazing, life-time friendships, wow – who knew?  I freely admit to being an on-line junkie.  I spend from the wee hours of the morning to late hours at night here.  And you’ve all been there with me throughout the day and night!

Thank you to my friends and family that have checked on me and spent time with me – you will never know how much that has meant to me and I know, because Keith and I talked a lot about that; what would happen after he was gone, would friendships struggle going forward.  I can honestly say that some friendships were actually strengthened and have become more than an occasional acquaintance over this past year.

Some relationships have gone away and Keith and I talked about that happening too, but honestly they weren’t much of a relationship to begin with – for Keith or for me, so I’m working on the forgiveness aspect and moving forward in 2016 with those who care to be a part of my life.  People that make excuses that they are too busy or too whatever, really are not invested and it takes years of tears to overcome that harsh reality.  I have never had a problem with honesty, it’s the only way I know how to be, but one of my goals for 2016 is to be drama free.

So again, thank you friends and family that have been here – for the long haul.

Happy Trails!

When Keith was healthy we took a few road trips and we took a couple of vacations, but it wasn’t until we started living in the moment that our traveling really took off.  I think I got my maternal grandma’s gypsy spirit … of course I wish Keith were sitting next to me on the plane or in the car, but in some capacity I know that he still is.

So an amazing group of on-line “family” have gotten together to bring me to Florida in January!  I am blessed by a pre-paid plane ticket by a wonderful woman who I pray will be well enough to be there and for me to hug in person, and the homes of three beautiful women who have graciously invited me to stay in their homes.  When I was told of this trip, honestly, I was so overwhelmed with emotion that they would think to get me there (which I was working on anyway) but this just worked out so perfectly for all of us that well, again, I am just so blessed and grateful for their friendship.  Florida in January when you live in Chicago, yes please!

In February, I will be attending an International Cancer Symposium which requires travel to Arizona.  Arizona in February when you live in Chicago, yes please!  As a volunteer for the PMP Research Foundation, I will represent this amazing organization with pride.  We are an all-volunteer charity working hard by providing hope for current and future patients..  Funding research for this specific cancer is what we do, by generous donations and benefactors.  Supporting educational seminars is as important to the public as it is to physicians and we are proud to sponsor events like this.  Providing, up to date treatment information, clinical and research information is what we strive for.

And giving support to patients, caregivers and friends of those diagnosed, is important to me.  I was able to do this for Keith and in many ways, I am blessed to continue doing this through him and his never-ending love for me.

Changes

2016 means other changes for me as well.  My youngest daughter and her two children are getting married!  Yes, I did say the kids are getting married because they are a family unit and I cannot be more happy for her and them as this blending becomes an incredible mix of nothing but love.  I am blessed that I will have a son-in-law who is so caring, loving, hard-working and respectful to my daughter.  He reminds me so much of Keith in his attitude and ethics.  God bless their marriage always.

This marriage also means a change for my living situation.  My loving grandson (4 years old in the coming month) likes to remind me daily that “Grandma, you are a very, very old lady” and sometimes, with all the chaos in our house, I think he’s right!  I have never lived alone so once I figure out whether I sell or stay (although this is an awfully big house for one person) I am going to embrace the change.  Talking to a friend recently, she explained how empowering it was for her to live alone.  It’s just going to be different.  And I will finally get to be a grandma for these two kids, instead of another parent – bonus!

2016 means, as I said above, drama free.  I am not big on making resolutions because I usually break them (fairly quickly).  But I am going to try to eat better – I will never be perfect with diet because I love good food and I love bad food too.  I love donuts.  I love greasy french fries.  But to be really drama free, I have to be better at my choices so I don’t create a health drama!

Letting go of hurt and changing my way of thinking will greet me tomorrow.  Forgiveness is something I have worked on this year and I have not been very successful.  Some pain runs so deep that I’ve thought that only God can forgive those transgressions.  I prayed a lot and asked forgiveness from Him in my ability to not be so forgiving.  I have never intentionally hurt someone and if I have unintentionally done that, when made aware, I beg forgiveness.  I am not perfect; I am human but I do know that after the last five years of my life, there is nothing more important than being with those you love and making time for them.  I take nothing for granted in this life because it can change in an instant.  Forgiveness only needs to be in my heart and I think I have that worked out.  It will never change circumstances and will never change the past, but it will allow me to say, with a clear conscience, yes, I am able to move forward – without fan-fare, without drama.  I’ve learned that all I have to do is “walk away” from things that bother me, now that is empowering!

Happiness and Music

I am choosing happy.  One of the last conversations that Keith and I had been about happiness.  No, I will never “get over” his death.  But I am, as I have said several times, happy that he does not have cancer.

I am happy with the person that I am.  I am happy to do good work to honor this man who honored me with his love and with his life.  My love will always be with him, but as he always told me, “honey, you have the biggest heart of anyone I know”.  I believe him now – because I still have this ability to care about others.  I am not angry, really never have been and sadness sometimes creeps in for what may have been, but I am happy to be alive and happy that I have children and grandchildren and some parents still living; I have siblings and in-laws and cousins and aunts and uncles and friends!  I am loved and that makes me happy.

Music is also my happy place.  Some music shakes me to the core and I cry because it is so beautiful and speaks just to me –to my memories of Keith and us and to my memories of our son, my sister and brother and others who have gone before me.  Some music reminds me of friends and good times spent together.  And my favorite music is the music that reminds me of Keith and I where I literally get butterflies in my stomach because they were “our songs” and give me the feeling of I can’t wait to see him again feelings of love!  Those are the absolute best!

Happy New Year!

May yours be healthy and prosperous and full of love and friendship.  For me, I am counting my blessings.  God bless you all.

11-Months a Carousel

Keith Eternal FlameI remember through the years always hearing that as you get older, the time passes more quickly.  That could not be more true than it is today.  Where have the last 11 months gone that my love left this earth?

What have I done with this time?  Have I honored the memory of the one that completed me?   Have I made him proud?

As I methodically move through this next month preparing for one year, (which actually seems inconceivable to me) I realize that the 9th of the month holds such a love-hate emotion within me.  Surely there is something important that I am not remembering about all of this; some connection to a date that will forever be burned into my memory.  What hope was there when God said “Come with me”.  For the suffering endured, for the sadness and worry to end, a celebration ensued.  It was over.  That was it.  An Event.  I must get over the date and remember the celebration.  This is what I am going to work on.  I am going to remember the joyful fact that this man, my man, my love and my life is in a place that none of this earthly grief matters.

There is a surface on which I build my future.  One deep layer is sparked by that eternal flame living within me; the love that will never die.  God has promised me that I just need to turn to Him and He will see me through.  Good thing He is there for me because there are times when I feel so very alone.  This is the hard part.  Even still, His presence known, I have never experienced such an emptiness.  I can describe my sadness and grief at the loss of parents and grandparents and siblings, and I can describe the hole left by the death of our son.  I am lost.

I am the child that sits on the carousel, as the music continues to play that is searching quickly with her eyes for the parents who brought her there.  Around and around I go but there is no security when I stop.  Keith brought me to that carousel and I have nobody to hold my hand when I walk down from it.  I am alone.  There is no one or no thing that will ever replace the love and security he gave me.  But if I hold steadfast to my knowledge of all things beautiful will be together in heaven, then I will take this as my hand-holding moving forward and let the music continue to play.

I am really okay, but some days are difficult.  When a grandchild has such tears of sadness and sobs with the pain of missing her grandfather, those moments take my breath away.  They make my heart hurt physically and make me lose myself in the grief.  Today is a difficult day and I don’t mind sharing that, but I am still a woman blessed.  I am most-loved by an Angel in heaven.  I love you and I miss you, Keith.

Raw Emotion

Darn it!FullSizeRender (3)  Just when you think you have made amazing strides in your own recovery from losing your spouse and you have explored every emotion known, something creeps in and tells you whoa, not so fast.  Bring those feelings in a little closer and let’s look at them, shall we?  I’m feeling a bit like a disgruntled employee.  I want to complain to the hierarchy, but I am the hierarchy in this mess.

I went from having an amazing week two weeks ago, feeling good about life and what it has to offer, had an incredible last visit with my social worker Marcia from hospice which included my hospice chaplain Jeromy and the most amazing, spiritual, God-blessed communion with the two of them and Keith’s presence felt so strongly that there was nothing that could bring down the love and gratitude and safe feelings I experienced. So I thought.

I went to visit Keith today and put beautiful fall flowers in his vase.  I had hoped it would brighten my somber mood as I sat there crying that I want him back.  That is both selfish and unrealistic, I know – but we can’t help what we can’t help.  I was all ready with my bucket and scrub brush when I left the house to clean the stone, but my head was obviously not in it because I neither brought jugs of water or the soap!  There are spigots all over the cemetery but it’s well water and you can’t use that on the headstones.  We are right next to a dirt path that will eventually get paved, so all the mud and yuk is staining the stone pretty badly … I’m glad I bought bright flowers.  I normally feel such great relief after visiting, but this time it only brought me sadness for my selfish self. I will seek refuge in God again to bring me through this.

I’ve spent many hours over the past two weeks pouring over medical records.  I don’t know why I’m doing it.  I’m reliving the past 5 years.  Yes, October 29th will be 5 years that the CT Scan showed so much cancer and our life as we knew it changed. I go back 8 years and find the pathology from that stupid single colon polyp and don’t know how I missed this before, HIGH GRADE adenocarcinoma in-situ.  Does it change anything?  No.  Does it change the course of action?  No.  Does it make me angry? Yes.  I know, it was just a polyp – a single polyp that had not invaded the colon itself, (which by the way was at the bottom of the cecum right where the appendix hangs from) and future scopes were clear.  What if they had gone in when pathology became available and they had done a right hemi-colectomy.  Yes, the future clearly indicated appendix cancer mostly low-grade with 50% mucinous tumors, but that dual diagnosis of colonic-type adenocarcinoma aggressive –  I’m driving myself crazy with these thoughts.  What if that cauterization of single polyp caused cells to escape and get into the appendix and cause this?  I’m grasping at straws and it doesn’t change things.

I don’t know if it’s the time of year but leading up to the next two months it’s difficult not to remember how things were … and his last 3 days of he went through – what I and his closest circle went through.  This is not what I want to remember, but it keeps popping into my head.  Sure, he was in a medically induced coma-like state, but we weren’t.  I despise reliving that.

As my last post indicated, these emotions come and go.  I’m not alone.  Talking with other appendix cancer family who have lost their spouses to this disease, we’re all in the same boat.

My nature is actually more positive than this post.  Nobody wants to hear or read that you’re really not okay because they don’t know what to say or do and they can’t make it better.  What are you supposed to say when someone asks “how are you doing”?  I’m doing the best that I can in a situation that was neither wanted, needed, or expected.  Have I accepted it?  Yes.  But I’m lonely and missing the man that gave me everything and I miss doing things for him – things that made him happy and proud.

So, in ending this update I will just ask if you are reading this to pray that these darker days emerge with abundant sunshine of wonderful memories of a man so loved and so missed.

Speed up! Slow down!

wordpress october 2015Grief is cyclic.  Tomorrow will be 10 months that Keith went to heaven.   Summer has flown by and I really didn’t get out in the weather much; we had a hot summer and I don’t do well in the humidity anyway.  I am not sure what I did during these months.  I can recount events, but the day-to-day it seems I just glide from one to the next.

I’m not sitting here pining away, but my mind, all day long, goes to where Keith is.  What is he doing besides enjoying eternity; surely he is spending most of his time watching over me!  That’s what we planned for – that’s what I hope for.  We could sit for hours across from each other and not say a word and it was great.  I knew he was there and he knew I was just a glance away.  Sometimes I make-believe it’s just like that now.  If I will myself into that mind-frame, I do very well.

Yes, the only thing constant is change and God’s love.  He continues to bless me abundantly.  My dear friend Denise shared a song with me that I play over and over – because you know, music is to the soul what nourishment is to our bodies.  The song is Sailboat by Brian Rector.  Do yourself a favor and listen to it!

Two important verses for me:

And I’m pretty sure I’m heard
At least I know I’m speaking
But I feel like a fool
Cause I can’t hear you listening
But I’m not giving up,
Oh, I’m gonna move on forward
I’m gonna raise my sail
God knows what I’m headed towards

Oh I’m out in the waves
And I’m hoping and praying
Please let this wind blow me home
And night after night
There’s an empty horizon
My God do I feel so alone
Sometimes life
And most times
I feel just like a sailboat

So much has changed since Keith died.  A very deep part of me died that day but with that death, also came a new growth.  I’ve come to understand things that I never thought I would.  I believe I have found the meaning of my life:  Love.  I was born to love.  I do love.  I don’t mean romance because for me, that romance still exists.  I mean love for life and for others and for doing for others.

I am constantly reminded of a spirit that moves with me.  Truthfully and wishful thinking it is Keith, but it could be our Heavenly Father.  When we make it Home perhaps we are but one spirit.  So bright and so brilliant that what we search for in this life becomes so trivial in comparison.  So for me, living with love in my heart, expecting the pain and the loneliness to continue which carves my future, slice by slice, I can enjoy what I have.

I am human and I fall, but through heartache, at the end of the day, knowing in my heart that I did something positive, said something kind, hugged a crabby grandchild, rejoiced in the happiness of a newly engaged daughter and give thanks for my blessings, I can sleep peacefully.  Even if those precious hours of sleep are few at a time these days, I am sleeping.  If I truly pray, every day, which I do, then my life is complete.

Speed up!  My thought sometimes is to let life move forward quickly.  Slow down!  My reality is that I am taking it one day at a time, slowing down those thoughts, and doing so with love in my heart.

Six months 6.9.15

Hawaii Sunset 2012

I wonder what you are doing in your spirit world today.

Are you thinking about me and how much I miss you every day?

I am living life with optimism; doing the things we made in our plan.

But equally I am saddened now that I must life it without my man.

I wonder if heaven is as we believe, or if your energy is just there.

Can you wrap that light around me please so I do not feel despair?

Six months is like forever without you by my side.

In two short weeks it will be 21 years that you took me as your bride

In moments of darkness I open my eyes to see the real beauty of your life.

It’s in what you gave to others and especially to me – your wife.

I am happy to remember all the wonderful times we shared.

There is no doubt from anyone how much you always cared.

I wonder if I will always count these months and years as they go by.

Will they always bring such emotion to break me down and cry?

I lost an important part of me the morning that you that you stopped breathing.

And because of that, though it may change, I will never stop this grieving.

There is nothing more important than the love that we shared together.

I am a woman loved, a woman blessed – it makes this heartache better. ©TMS 6/2015

DEATH CHANGED YOU

A friend recently said “death changed you”. How could it not? Why would it not? Death of a soul mate, of a loved one, of a family member or friend will forever change you – and it should.

What I realize however, it wasn’t my husband’s death that changed me into the person I am today. It was the process of that death. It was in finding every means possible to keep him with me here on earth. It was the thoughts that went through my mind for 4 years. It was in the knowledge that he was going to die and still try to live in the moment for 3-1/2 years. It was in the love exchanged between us and watching the determination of one incredible human being get up every single day with a smile. Death changed me? Reality shows that death gave me a gift. My husband’s death gave me purpose like I’ve never known.

My husband strengthened me for twenty years in his every action. God only knew what the future held and what mattered to Keith was what he could do for others and especially, for me. He did what any kind, loving, adoring man would do. He built me up so that today I could emerge a stronger, changed woman with purpose. He never for a minute thought I was anything but strong and capable and would often tell me that. When I sometimes feel sorry for myself, I draw on the strength that I really do have.

I realize I don’t have time for drama. People who create these neat little spaces in their minds where nothing is good in life have never lived. I see it every single day and social media is the perfect platform.  We can give light to the world or we can keep it dim with ignorance. Death made me less tolerant of ignorance. I don’t mean ignorance of being unskilled either. Ignorance is when people are so self-absorbed that they can’t look at anything in a positive light. I don’t have patience for this. Death changed me. I miss Keith more and more each day but if I dwell there, I wouldn’t be true to myself – death changed me.  There are so many wonderful avenues to explore in this life if we just open our eyes to them.  Nature, animals and especially other human beings.

I have no patience for people who complain about silly things – be grateful for those things that annoy you – you are alive. Quit complaining about your job – be grateful you have one. Do something to change your circumstances; only you can do that.

I have all the empathy in the world for suffering and loss – when that suffering and loss is out of our control. I don’t have it in me anymore to feel the angst of so many that just are unhappy people. I don’t follow the tabloid media like I used to – it’s all nonsense.

Death changed me and it changed others around me. I’ve seen profound changes in two of my children. Changes to show just how strong they are – there’s no room for drama. We have all learned a valuable lesson. Life is short. Learn from it. Create your own happiness. Be kind. Love yourself first. Give back. Give of yourself. Grow yourself.

Tears of sadness are like rain to the flowers of life.

tulipsLet the tears help you grow. – tms

Death changed me? Maybe a little, but I am able to speak more openly and honestly. I don’t have a problem voicing my opinion on something I truly believe in. I believe in hope. I believe in love. I believe in God my Father, I believe in helping others and I believe in paying it forward.

I’ve always had purpose, but death changed that purpose. I will forever advocate for those living with and dying from the very disease that took Keith away from me. My focus is with the PMP Research Foundation and with his surgeon, locally. It is with the online support groups of which I am a member. My purpose is to align myself with those of the same principles and same goals.Not just in cancer advocacy but in every facet of my life.  I owe it to myself and to all of my children and grandchildren to always be the best person I know I am capable of being.

Death changed me? Death made me hopeful. God will bring me home someday too. It’s what I do with the time that I have left that is important. Life is beautiful and precious and yes, sometimes rotten things happen. Is it in your control? If it’s not, let it go.

My heartfelt prayers go out to my family fighting appendix cancer, living with appendix cancer/PMP and living with the results that appendix cancer left them with.

A Lifetime Gift

Keith gave me the most amazing gift while he lived. He gave me his love. He also gave me an incredible perspective on life. His love helped shape my future and because of his belief in me, I am a stronger person today than I ever have been.

I’ve mentioned before this once-in-a-lifetime love affair that Keith and I shared. When I hear people mention that a good marriage takes hard work, I really and truly don’t get that. We never needed to work at anything – it just was. We went through times that our life was in turmoil with finances, raising 5 kids as a blended family, health issues, (mostly me) and outside influences that affected our lives with family and friends and incredible personal losses like everyone does. But we never let those things get in the way of what was most important. Let me say, the needs of our children came before our personal needs, always. But from the perspective of what I needed and Keith needed, truly – all we both needed was love.

A very wise woman whom I loved deeply, God bless her and rest her soul, once told me: “Your husband had better be your best friend. Someday your children will grow up and move on and you are stuck with that person for the rest of your life.” Keith was my best friend. Keith gave of himself so completely that it was impossible not to fall in love with him. There was never a “me” in our relationship, it was always “us”. There was always “we” – what are we going to do now? I refuse to go forward in life in the singular, because Keith will always be with me to guide me and love me.

We can go through life with blinders on (I lived that way pre-Keith) or we can pick ourselves up through adversity and look at the whole picture. We are on this earth for a short time and that became increasingly evident when Keith became ill. I think because Keith and I shared the same objectives in life everything just fit.

Keith and I figured out “our” key to life many years ago. For us individually and together, giving always felt good and it felt right. I am not talking about financial giving; I am talking about the giving of you – to another person, to strangers, to family and friends. We gave together and that was the best feeling of all. We were partners in love and in life and even now, when we are approaching two months since his passing, I feel him pushing me to keep smiling and living life.

I look at this experience of losing my husband as one of personal growth. Through Keith’s continued love and support (call me crazy, but I’m a believer) I have been seeking opportunities that would emulate the way that Keith and I lived.
I will not let Keith’s life and especially his death, be in vain. Toward the end of his life, Keith and I talked at length about what the future would hold. We both knew, at least we thought we knew that it would involve appendix cancer and pseudomyxoma peritonei.

Last month I contacted and asked to volunteer, in whatever capacity I am able, for the PMP Research Foundation. www.pmpcure.org.

The mission of the PMP Research Foundation is to fund promising research to find a cure for Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM), and to fund educational programs for physicians and patients about these diseases.

I truly cannot think of a better way to pay Keith’s life forward – to feel like a part of something that is bigger than I could have ever imagined in honor of Keith, feels so right. I am so thrilled to have been welcomed so graciously by this organization.

For those of you who are not on Facebook, please take a look at the following link. If you donated after Keith’s passing as was our wish, you can be proud, right alongside me that with others, Keith was included in the memorialization of the following research grant: http://www.pmpcure.org/blog/2014-research-grant-recipients

Keith lives on through all of those whose life he touched, those who loved him and those he loved. He will always live through me as I continue my own advocacy and awareness campaign; supporting other venues relative to this disease, and especially keeping active providing support of those whose lives were, are and will be affected by this cancer. We will also continue to be very connected to Dr. George Salti, who truly gave us the opportunity of a lifetime. So from my non-singular life, we are still together.

My life is busy and full. I am loved and I love where my life is taking me. I am also excited to share that my sister, our girlfriend and I are going to Puerto Vallarta, Mexico next month! A full week of fun in the sun and a few cocktails (hey, it’s all inclusive after all) shared with two of my favorite women has me a little more than excited! Thanks to Kimberly for holding down the fort at home!

My blog would never be complete without mentioning my faith. I am so grateful to God for bringing Keith into my life and for his love, which will truly will last me a lifetime. I am grateful for the opportunities that I have been praying about being made clear to me.  Amen.

“God is good all of time. All of the time God is good”.

Appendix cancer and Stuart Scott

The world is a stage and we can sit in the audience or we can be the character most beloved by that audience. The choice is ours and while I don’t want the leading role in any production, I will make my voice heard in the choir.

Below is my personal observation on the death of Stuart Scott in the appendix cancer world:

In the USA, we tend to idolize those in the public eye – especially actors/actresses and sports figures. Stuart Scott, sportscaster, while fighting a debilitating appendix cancer owned up to the fight. He received wide praise for his willingness to work through some awful treatments and get back on the set as soon as possible following surgeries. In the appendix cancer and pseudomyxoma peritonei communities of which I am a part, there was a profound sadness that he didn’t bring more awareness to the disease. Since my husband, Keith Surges, very recently passed away from the very same disease, I can understand why someone would want to sit in the audience.

Stuart Scott was first and foremost, a dad.  And second, he was in the public eye. Everyone wanted a piece of him, especially his sports network followers. If he had embarked on raising awareness it would have taken away more precious time from his family. It was the one thing he was able to keep somewhat private – for himself to share only with his children and those in his inner circle. His privacy with it was the one thing he DID have control over.

I don’t believe that because a person is in the public eye it is their duty to raise awareness for anything. To be an advocate or a voice for something means it is important to you deep inside. What appeared to me to have been important to Mr. Scott was not his cancer, but his life and his privacy. I think the public outcry in the sadness of his passing allows those of us who want to raise awareness the foundation on which to start. And I hope by doing so, the focus is put back onto awareness, not the passing of a well-known and by all accounts, deeply loved man. I too lost someone that falls into that very same category of being loved and respected, but known not to the world. I aim to change that!

There are some fantastic organizations out there that are doing amazing things for research, advocacy and awareness in the appendix cancer world … the www.pmpcure.org (intercontinental research, advocacy and awareness)  www.BeUninTIMidated.org (research funding, awareness and advocacy) and www.pmppals.net (awareness and advocacy). All of these organizations were started by patients while fighting the same disease as Stuart Scott. These are the people that want to help others. I’ve seen in our own community of patients, friends of mine, who are willing to put themselves out there after misinformation about appendix cancer is given by the media in reference to the passing of Mr. Scott.

These people, the patients and their caregivers, are the real heroes in my eyes. Stuart Scott had some very inspiring words to share with the world in his fight. While I could never and would not ever, discount any lasting mark that Mr. Scott left on this earth, and the sports world will no doubt miss his incredible presence, it is not up to the “superstars” to advocate and change what we believe needs to be changed. That change must come from within ourselves by speaking first in our own communities and then by embarking on larger scale awareness as it fits into what is in our hearts.

Appendix Cancer adenocarcinoma is as deadly as is its counterpart, Pseudomyxoma Peritonei – but it’s treatable and curable by a surgery called “cytoreduction” and an ensuing “HIPEC” which is a heated chemo bath given during the cytoreduction.  Sometimes, depending on pathology, systemic chemo can help prolong life or even shrink some tumors allowing a patient to become a good candidate for the surgery. You can Google either one of those terms to get a better understanding.  If the pathology isn’t extremely aggressive as in my own husband’s case, and the disease hasn’t progressed too far making the patient inoperable, and people get to the proper surgeons who perform these complex surgeries as soon as they are diagnosed, it is curable. It is definitely NOT a one size fits all disease and it does not discriminate. I’ve always said in this community that every body is different but everybody is the same.

If this disease has affected you personally, sometimes the best thing you can do is fight to stay alive and there is no room for anything else.  However, in our case we felt strongly about something – awareness!  So Keith did all he could do to fight until the end and he did what he could to help others.  My husband and I have been very forthcoming about his disease.  That was important to him and it continues to be important to me.