Ripples and Circles

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This photo was taken off the shore of Waikiki, two blocks from Diamond Head, in June of 2012 during our first visit to Hawaii.

A slight wind or pebble in the water will make a ripple and spread out to sea.  Keith is a ripple inside of me.  With his love and with my memories, I brave the  often-times tumultuous waters. Life is full of ebb and flow and I am grateful for the ability to ride these waves.

I wrote this on Keith’s CaringBridge site on January 28, 2014 as the decision was made to bring him home from the hospital with Hospice Care:

“Both of us believe today that no matter what transpires, our love will cross the heavens and earth and will hold strong until our souls are entwined again. We believe God mapped this out for us. He brought us together because He knew what each of us would need from beginning to end. I won’t pretend to understand how God knows I am the one who will endure, but I have faith enough in His purpose for me.”

As promised in my last blog update, I have some exciting news to share – I know I am a week delayed, so hopefully nobody has held their breath for my news!

Effective this evening, I am officially a member of the Board of Directors for the PMP Research Foundation.  

This is the full circle that I mentioned before.  What does full circle mean, anyway?  We all start somewhere and we end somewhere; first the womb, and (my belief that) in the end, heaven. But the middle holds a lot!  I met Keith, we fell in love, we created a beautiful life and then he died.  That was a full circle.  Lucky for us, we can link these circles together, and my joining the Board, does this!  It is with Keith’s love and I know, his blessing, that I continue my personal advocacy, awareness and support for those being treated and who will be treated for appendix cancer and pseudomyxoma peritonei.  Forever linked with these memories of Keith, the decision I made a year ago to be a background volunteer for the PMPRF has come full circle!

This is a huge personal gain,  for those who know me.  I am very much a team player, but have always preferred to play in the background.  The time for me is now.  With the support of my family and friends, and especially the other Board Members, I am ready to tackle my very first national public appearance on behalf of the PMPRF.  Arizona here I come!  I can’t think of a better place to be on Valentine’s Day than to be supporting our organization with amazing love in my heart!  One of the best things Keith did for me was to constantly tell me that he was proud of me for helping others all throughout our marriage.  The key for me now is to remember his sweet words and carry them with me.  After all, it is because of him and my love for him, that I am paying his life forward.

A little background of the PMPRF:

The PMP Research Foundation is an IRS-designated 501(c)3 charitable organization. The Foundation was created in 2008 by a community of individuals affected by Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM).”

“Our organization exists to support and fund promising research that moves us toward a cure for pseudomyxoma peritonei (PMP), appendix cancer, and related peritoneal surface malignancies (PSM). We also endeavor to support the PMP, appendix cancer and PSM community of patients and their caregivers by providing the latest, most accurate information about the best practices in managing their disease.”

The truth is I am still so very much in love with Keith.  I can’t help but believe he is also in love with me – eternally.

 

 

The Thrill of It All

If I wanted to go to an amusement park, I would have bought a ticket. Mind you, I enjoyed the thrill of the ride when I was younger. I never thought much about the mechanics and how one loose bolt could alter your life forever. Well at least not at a younger age. I’m older now and my mind has changed from the carefree, thrill-seeking days of yore.

Truthfully, I am OK. I am okay with the uphill climb sitting in the rail car. I’m good with the twists and the turns at a high rate of speed. It’s the sudden drops that I struggle with. Those drops come with crocodile tears sometimes. You feel them coming but you are able to control it and then whoosh! With the speed of a spiral drop fall the tears.

This happens quite often; those “oh no, here it comes” moments. Recently I’ve had some health issues and had gone to the doctor. This doctor was part of Keith’s care team and actually the one who broke the news to him about the cancer. The nurse asks the usual questions after taking your blood pressure and asks about medications and changes in family history. I said, no just changes in my family dynamics and mention that my husband passed away in December. The usual “I’m sorry” niceties happen and she left the room. The doc came in and we talked about what’s going on with me and he went to check some recent labs and then came back in to discuss them. He walked out and then walked back in and I thought he was going to cry – the nurse must have told him. Nobody internally told him about Keith and he wanted to say how sorry he was. I thanked him and then he started about what a wonderful man he was and how strong he was and he just wanted his part to do whatever he could to keep Keith comfortable. This is the second time I had to explain (including to our primary care doctor) that Keith passed away. So here came the roller coaster, creaking and winding its way to the top and BAM! The tears started flowing as I said yes, I miss him terribly, voice cracking and crocodile tears streaming. I felt like I just want to get the hell out of here and not deal with this. But of course, I wiped the tears and smiled and thanked him for his kindness. I am certainly glad that is over with! In the end, Keith abhorred this doctor … he felt cheated by him and I think because he is the type of doctor that just wants to help, when he couldn’t help, it was hard for Keith (and me at the time) to accept some of the things he said to Keith. He’s just too nice and it’s hard for him to say “it’s not going to end well”. I’m over that because I feel he is a good physician and I have been going to him for many years so he knows my history.

One would think (I wish everyone thought like I do) that it would just be an automatic process – while Keith was a hospice patient, he was still under the care of oncology in our group of physicians.  I personally notified his surgeon because I maintain a professional relationship him. I guess I didn’t realize it was my burden to notify all physicians.

I am finding more confidence in myself as the days go on and thank God for the strength that He has given me to endure. Certainly there are days that I feel like it’s not fair, but it is what it is and I can’t change it. Boy, if anyone knew me 25 or 30 years ago I could have never said that! I remember how irritated I would get at the words “Rome wasn’t built in a day” and I would think (not always to myself) – what the heck does that have to do with anything. It wasn’t until Keith got sick and we wanted immediate results, immediate answers that we realized we had to build foundations, brick by brick, to get a solid plan in place. You can liken phone calls and paperwork to that process. In retrospect, all that building and planning and infrastructure of keeping Keith alive for so long was to help me cope today. It was an on-going blue-print with a completion date known only to God. And definitely not built in a day!

I am now my own building and currently undergoing renovation. I neglected things (myself) during the past year especially, despite Keith begging me not to. Now that things have calmed down, I am listening to his voice in my head and keeping yet another promise.

What is it like to be lonely? I frequently leave the TV and music off to listen to my thoughts because there is so much noise in my head that the competition of the electronics gets annoying! Unfortunately these days my brain is working overtime and not letting me get a good night’s sleep. I must be dreaming a lot and not know it and those dreams must be in a boxing ring somewhere. By the looks of my bed in the morning, I’m fighting off someone or something! Seriously … I think I’m looking for that guy that I slept with for over 20 years.

Doors close. Doors open. Although the roller coaster will continue, I am finding peace. Grief truly does not have a timeline. I despise that my husband died. I despise that I am left to pick up the pieces by myself and live the rest of my life without his companionship. But somehow I just can’t be angry about it. I think that if I was angry it wouldn’t be painful, but how can I be angry when God gave me so much to be thankful for in my life with Keith. As I lessen my hurt, I am able to feel Keith’s presence more and more. I have moments like I did in the beginning where I can just take a deep breath and slowly let it out and feel his embrace. When Keith held me, it was always the only thing to truly ever bring me the most calming peace I have ever experienced. I miss that but my memory is returning as I let go of the hurt. My heart will never fully feel what it did but that doesn’t mean it isn’t open to new ways for me to find joy.

I am looking forward to August 22nd to celebrate Keith’s life with those who truly cared about him. Those folks who are able to physically join us for our annual fundraiser, the pub crawl, probably have no idea how their keeping Keith alive in their hearts makes me even more proud of Keith – is that even possible? I hope that I don’t experience too many of those big roller coaster drops that day, but if I do, they just may be tears of joy.

I am also looking forward to my first experience at a symposium hosted in part by the PMP Research Foundation and Dr. Salti at Edward-Elmhurst Hospital taking place in October.  I am grateful that I will sit at a table representing the Foundation knowing that Keith’s life mattered and all of those facing or who will face this disease have hope for the future.

I am looking forward to the Amusement park after all. I want to ride the Ferris Wheel and watch from the top, to see what heaven sees.  For now, I am just looking forward!

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.

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.