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.

 

 

Loss, Love and Paying Tribute

I am here.

I am here.

It is difficult to console the inconsolable heart.  Each must experience the pain of loss or it will never leave us.  I’m not describing loss of love.  I’m describing loss of life of someone who made your world every bit as wonderful as it could be.  Be it a spouse, a child, a sibling or best friend.  Maybe you have lost a parent, grandparent, an aunt, uncle, cousin, a mentor, or a partner.  We always say “I’m sorry for your loss” but we cannot possibly feel another person’s loss.

People think they know the depth of your loss but they don’t.  That is what we call empathy and most of us are capable of feeling that.   Many of us can empathize with others.  But nobody can feel what is in your heart during such a personal, tumultuous time.  Think of times that you have realized loss through death.  Like most, we are sad and move forward and sometimes we become stuck in a place where every waking moment is wrapped tightly with emotion of that person. I’m in between those places and it is a good place for me to spend my time.  Sounds odd, right?  Actually I have found moving forward and being bombarded with beautiful memories, the perfect balance.  Memories are the driving force behind getting out of bed and living my life the best I know how.  I do not believe for half a second that I would have been able to do this if I had not had the best of the best as my husband.  What he gave me personally in my life will always be enough.  But he is where there is no more cancer, no more fear of what tomorrow might bring.  He is in a place that only peace and harmony exist.  His spirit is alive and well within me and that is a beautiful place for him to rest.  I am glad Keith was a patient man, because now he waits patiently as I live my life – day by day, month after month, and hopefully year after year.  Thanks for the memories, Keith … may they continue to keep me lifted to this place of peace.

Keith spent his 60th birthday celebration in heaven, on Sunday, August 23rd.  I bet the angels sang beautifully!  We had some chocolate cake and sang happy birthday to papa – it felt good for us to still do that and be thankful that we had the time we did with him while he lived.

On Saturday, August 22nd, we celebrated Keith and our memories of Keith during our annual fund-raiser.  Thanks to generous donations, we raised $11,350 dollars for The PMP Research Foundation to continue their efforts in Research and Education.  They will also “give back” to Dr. Salti, for his programs that directly impact patients with appendix cancer and pseudomyxoma.  It was a wonderful day and I know that Keith would be so proud and so happy to know that people still care.  People still come out to share his legacy.  I am not, by any standard, a public speaker.  I did not like it in school and I do not like it as an adult.  But I forced myself to get up in front of the crowd because I had a few things to say and because I was and am, so very grateful for all of those who donated and those who attended both in person and in spirit.  Here is a copy of that speech:

Let me start by thanking Kimberly for all of her hard work and dedication! Without her, many of you would not even know about this event. She has worked tirelessly to get donations for today and there are many. Thank you Kimberly for all you do in dad’s name.

First, some of you know that I am a volunteer for the PMP Research Foundation. Funding Research and Education along with patient support through email and social media websites is their purpose. In 8 years, they have received through private donations and fund-raisers such as this, well over 1 million dollars. They have provided funding of $750,000 for research into appendix cancer/PMP with another $100,000 to be awarded in December of this year. I am proud to work alongside them in whatever capacity I am able and believe with all my heart that Keith wanted something like this for me. If I can help just one person, through volunteering, my life will be well-lived.

Second, thank you to Dr. Salti for all that you do. It is my personal goal for the Appendix Cancer and Pseudomyxoma community to know you as I know you. An expert surgeon as we call you in our support groups. I want people to know your dedication in performing these surgeries that are grueling and lengthy – Keith’s surgery was 12-hours. I want people to know that you are not just a physician who treated Keith, but you are a part of my family. I am also proud to be a part of your team going forward as a support to others as needed. On October 6th, Dr. Salti and Edward Hospital will be holding a Cancer Symposium sponsored in part by the Research Foundation. It is free for the public to attend. Check out Edward’s website or pmpcure.org for information. Thank you again Dr. Salti, for your experience, expertise and especially your dedication to your patients.

Last and certainly not least, most of you knew Keith as a strong, powerful man. He was that way, but there was a side of him that made me fall in love with him – It was the twinkle in his eye and believe it or not, his shyness. Most of all, it was desire to be loved. I loved that man with every ounce of my being and he was so afraid that after his death he would be forgotten. Despite a building and a complex bearing his name and family and friends who have gathered here, that was his biggest fear. On behalf of Keith and on behalf of my family, thank you for not forgetting him.

We will continue our efforts for as long as people continue to support us and Keith’s memory.  As my daughter told me, “mom, if that ever happens, you and I will still go to five different bars and celebrate dad”.  I hope it never comes to that.  I hope we continue to gain support through the years for Keith’s memory; obviously our driving force, but for the many others who have lost their lives to appendix cancer and its variant pathologies and for those who fight every day.  I hope the future holds a cure, that’s our purpose – but until that time, we must individually do what we can to help others.  That is what we pray for, that is what we focus on.

Truly, the man I married … I thanked God while he lived for bringing us together.  I still thank God for that.  The true measure of a man, I believe, is the indelible mark he left on the hearts of others.  What Keith left on my heart is so deep that his dying opened up a space that only memories of him can fill.

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!