It’s June.

Summer is upon us.  June is one of “those months” … reminders.  The 9th will be 2-1/2 years that my husband took his last breath and the day I lost a huge piece of my heart .  The 16th will be 5 years that we renewed our vows at a surprise anniversary party.  The 18th will mark 5 years that we first stepped onto the Island of Oahu in what became our personal glimpse of heaven. The 22nd … we would have been married 23 years.

I am sad.  I am happy.  Some days I truly feel bipolar with the up and down emotions.  But most of all, I am so grateful for what was, for what always will be in my heart.  I am a survivor.  I am hopeful.  I am free from doubt.

Today I stand in front of the mirror and tell myself that I am strong.  I have overcome obstacles personally and spiritually that I shouldn’t have had to in my mid 50’s and I know that I am not alone in the space created by death.

I was asked recently “How do you like living alone?” The answer is complex.

I love it for the fact that I am able to do what I want when I want with no accountability to anyone but me.  If I want to stay up through the middle of the night and sleep in the next day, there is nothing stopping me.  I fix what I want to eat when I want to eat it.  There are no rules and I can make them up as I go along.  My memories sustain me every day.

The second part of that question is that more than anything, I wish my husband did not die.  I wish that appendix cancer did not ravage his body.  I wish that there were better treatments so that I could be sitting next to him and deciding together what we would eat, when we would go to bed and what we would do for the day.  So, the long and short of it, I love it and I hate it.  Once again, up and down in a very bipolar way.  Unfortunately there are no medications to help that part.  I do believe the future will hold hope for others when surgical cure is not possible.

My purpose in life changes often, but the changes are always purposeful.

My purpose this June is to enjoy my memories and remember the love that always will be.

 

 

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“The only thing constant is change.” – Heraclitus of Ephesus

Today is, for the most part a typical Sunday morning, the clouds are abundant and the streets damp with the rain that fell last night.  It’s early at 5:15 a.m. and I didn’t go to sleep until midnight.

What is this energy I feel that isn’t typical?  Ever-evolving I am.

The other day I was looking for something and ran across an ancient pedometer that I believe my husband had brought home from some golf outing he attended.  Like most things fitness, it either went into a corner, was given away or thrown into a drawer.  This is the most basic of pedometers that you can find.  It tracks your calories, kilometers and miles.  Not steps, but that is okay – any step forward is better than back.

I went to that pedometer which seriously has to be no less than eight years old and pulled the small piece of paper attached to it to see what type of battery it would take.  In doing so, I pushed a button and the display came on.  “Some battery” I thought to myself as I began pushing the buttons. 0000 meant I had an awful lot of work to do.  It’s a balmy 60 degrees Fahrenheit, a nice breeze.  I can do this.

Like my husband’s death, we planned for it.  We knew it was coming and it would change my life in ways I had only imagined.  But I could have never imagined how much it would change.  I’ve lifted the covers from my head to the point I can breathe a bit easier.  I no longer need that filter to embrace the daylight.

Last week I took the incredible challenge to change.  I began a weight loss program and this morning, I used that pedometer.  I promised myself when I moved last year that I was going to do this.  I need to get healthy again.  I did try but often met neighbors who walk their dogs and wanted to chat – once that happened, my walks never continued as I need to walk alone at a pace that is comfortable to me.  I need to do this, I want to do this.  I am 4 lbs. down … and today I logged 0.778 miles on that pedometer.  It is baby steps.  I have a long way to go but when I realize my grief began with my husband’s diagnosis, I’ve been living this heavy burden for six and a half years.  Indeed it is time for change – my habits, my health and my life are as important as the man I loved, cared and advocated for.  As I walked this morning, I imagined him telling me “honey, you can do this and I am with you every painful step of the way.”

I don’t care much for change, especially when it is out of my control, but hopefully, the tools of faith, hope and the desire for change, will bring me further into the light of joy.

On Friday evening, I was privileged to return to the site of the Beloved retreat that I attended in January.  This time I was able to carry the luggage of new retreat-ants and light their path in the darkness to knowing they are beloved.  As I came together in community with others I had met on my own retreat, others who had attended at different times and once again my daughter at my side, I was able to share with them just how much I grew from my own experience there and that I did in fact keep my promise to find joy.

We do not always know when we go about our own lives how we sometimes affect others.  Sometimes, out of the blue, you can be called upon and a split second decision to say yes or no can make or break a person or situation.  I used to be a constant yes.  Grief began to change that and that is not the person my husband fell in love with.  Yesterday I said yes again to someone, to help them sort their feelings, their fears and angst and talk them through a situation that otherwise may have ended differently.  We do not know when we will be called – either spiritually or literally, but if we open our hearts to the possibility that carrying the load for others when they are burdened with the weight of the world, we can become the change that another person is seeking.

A step outside of our own comfort zone does not need to be a heavy task.  I can say with a smile in my heart, I am beginning, truly beginning to find joy.

 

Twenty-Three Years Ago

That old-time feeling comes around again.  It could be the time of year.  We were introduced in March of 1994 at physical therapy.  We fell head over heels at an informal gathering of patients on April 8th a mere two or three weeks later.

I get that prickly sensation and my heart skips a beat when I think of our first evening.  We played darts and imbibed on seemingly endless bottles of beer.  The music blared and he whispered in my ear a few times. The more crowded it became, the closer he had to move toward me – there was electricity in the air.

After a failed attempt at a second marriage and going it alone for the two previous years, a relationship was the last thing on my mind.  What was it about this guy?  What a smile! What a laugh!  What a touch!  It may have been the gentleness of his voice.  It may have been that he asked questions about me, about my life and willingly shared his story.  Reciprocal respect with an eagerness to listen – what a novel approach toward never-ending love!  Above all, he was the kindest person I have ever met.

He was newly divorced with children and a grandchild on the way.  I was struggling to get the funds together for my own court proceedings.  My children were gone for the weekend and this was a Friday night.  It must have been about midnight and I did not want the night to end.  Our PT friends had all gone home and I knew that I needed to leave as well.  I had not felt like this in a long time.  Was he my knight in shining armor come to rescue the woman who only wanted someone to love and to be loved back with the same intensity?  We were married seventy-six days later in the most unceremonious of events at a court-house with our 5 children in tow.

 

April 1994

April 1994 – meeting my parents for the first time

As the goosebumps arrive at the memories of the beginning of our relationship, I smile.  Yes, it was the best time of my life and it continued to be the best love to the end.  Sometimes throwing caution to the wind can reap the most amazing of benefits.  In this case, it was the love of a lifetime.  My life is not over, but his ended too soon by a horrible disease called appendix cancer/pseudomyxoma peritonei.

When I think about the twist of fate, I am forever grateful that he chose to go out that night and that I threw caution to the wind and would not change a thing in our relationship.   Neither of us was perfect but there never a more perfect match for each other!

I am blessed and I will love him forever.

Stepping Stones

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There’s a lot of personal information in today’s writing.  It’s a process by which I decompress and share because I know there are others who are experiencing the same feelings.

Ugh.  That pain.  What is that pain in my stomach?  What is that pounding in my chest?  What is this feeling of impending doom?  What have I done?  What will I do?  When will this stop?

How did I get here again?  It’s been nearly 22 months since Keith died.  Why now?  Why is it all hitting me now?  Where have I been?

Over and over and over again, I am experiencing that horrible feeling in the pit of my stomach that I felt when they closed the funeral chapel doors and closed his casket.  I held it together up until that point.  I felt then like someone had punched me in the stomach.  It took my breath away.  It is taking my breath away again.

How do we get from a safe crevice in this mountainous climb to the rocky ledge that I find myself standing on?  Where does it come from?  It hurts so badly.

I witnessed God in our home, in our lives, in our hearts.  He promised Keith and me that things would be okay.  I promised Keith that I would be okay.  I feel like a failure in that right now.  I am not okay.  No, I do not need counseling.  No I don’t need to give it to God, He already has it.  I need to find a way to feel less like I’m moving backward and more like I am choosing the right next-step and not teetering on the edge when I really am making sound decisions.

Who knew that leaving my old surroundings would invoke such emotional strife?

I am struggling with everything.  I have so many friends who are fighting for their lives with the disease that took my husband.  I have lost too many friends to the disease and it consumes me.  I can’t find my balance anymore and this ledge is a scary place to be.

I’ve never experienced panic attacks before where they came out of nowhere.  Sure, I’ve had anxiety throughout my life (who doesn’t?) but not like this.  You think you’ve got it all together and then BOOM.

I MISS him.  Keith always, always knew what to say when something needed to be said.  He grounded me like nobody else ever could.  He showed me how to live in the moment.  The problem is that right now, every moment feels like an eternity.

Back in 2005 I had encephalitis and meningitis from West Nile (mosquito borne illness) and had a lot of issues post illness.  I was put on Cymbalta (an anti-depressant) to deal with the effects of what it did to my brain.  The dose was increased in 2007 when I had a stroke-like episode which left me in a wheel chair for months … eventually, thank God, with intensive therapy I did heal, but the medication was affecting my liver along with all the other meds I was taking so I went off of it.  Then Keith was diagnosed.  I poured all of my energy into helping him and making sure his every need was taken care of.  I didn’t have time to feel anything but intense love for this man I was taking care of.

Grief is messy.  It’s something nobody can experience through another person.   I am nobody’s hero – I am not an inspiration.  I am a woman who was blessed to be loved by the best.  If I could have traded places with him, I would have, in a heartbeat.   I didn’t ask to be left behind, but I was so I have to figure out a way to keep hanging on, even though some days, it is by my fingertips.

Over the past few weeks, since my move, I’ve experienced more stress than any person should have to have.  I finally took the initiative to see my doctor.  I don’t want to take medication every day to “cope” – but I did agree to take it (Cymbalta) for 3 months.  I was given another medication for the panic attacks and actually slept very well last night.  But, I want to be in control so those will only be used if I can’t find myself able to handle the pounding in my chest.

I depress myself these days and that’s not a good place to stay.  I have been taking breaks from my support group because I’m not much good to anyone if I can’t be good for me. But that doesn’t mean that I am not thinking about them all constantly.  It’s a seesaw life.

I am not the only one struggling and I recognize that.  As much as Keith’s cancer was his journey, being left behind is mine.  Doing it without him is the single hardest thing I have ever had to do.  I made him a promise, yes, I will be okay… and I will be.  I am impatient and I want to know when.

 

Choices, Consequences and Life

 

trust and faithI have started to blog several times because I have a lot to say (surprised, aren’t you?) and then have ended up deleting because it all sounded so whiny.

Choices – as a reasonably responsible adult I knew I would have to make a choice about my living situation.  It was becoming apparent that I was sinking deeper and deeper into a situation financially that was not going to have a good outcome.  Here I was, for the first time in my life, living alone in a big house in which I generally occupy 3 rooms – the kitchen, family room and my bedroom.  The rest of the house was taking up space in my pocketbook and in my head.  I had to move so I made the choice to call a realtor to get “an idea” of what I might sell the house for.  Things moved swiftly with the help of a few wonderful people and the house was put on the market in two weeks from first meeting and then subsequently sold 14-days later.  Okay – now what?  The new buyer wanted to close in a month and I had no clue where I was going to live!  To say that I became a crazed insomniac would be putting it mildly.  Day and night I was searching for the perfect home … somewhere close to where I used to live, about 40 minutes north of where I am now.   I would be closer to the grandkids.  I could find nothing in my price range that didn’t have 15 or more stairs (hey I’m “oldish” now).  For what I could find, my car wouldn’t even fit in the garage.  To know me is to know that my vehicle should always be protected from the environment … to make matters worse; it would cost me what I am currently paying.

Yeah, not all things in life work out the way we want them to work out, but they do work perhaps as they are intended.  In the meantime I needed to get a pre-approval for a new mortgage and submit the necessary documentation.  I have learned that I keep way too much “stuff” but I am organized in most of it.  That financial process, for the most part was easy and approval came two days later.  What I wasn’t expecting was an IRS issue.  Stress … when you open your mailbox and receive a letter from the IRS.  It happened to come on the day of our annual TEAM KEITH fund raising event.  That was a Saturday and I had to wait until Monday to contact both the new loan company and the IRS.  I needed to submit 3-years’ worth of tax returns.  I did that.  But as a normal course of business, the lenders will generally have you sign a document requesting IRS transcripts.  It’s sort of a double check that what you provided is actually what was filed.  This is a public service announcement: If you apply for a loan and you have previous filed a joint return with your spouse and request records and he/she was the primary on said taxes, the file will be flagged.  Dead people should not be applying for mortgages – period.  I learned that in fact, people will try to do that in an identity theft scenario so the IRS began doing this “flagging” upon final tax returns for the deceased.  All is well that ends well, and I was able to have the IRS fax me the 33 pages necessary after giving my crazed, manic-even, sob-story to the agent on the end of the phone line!

Back to the story, I was out with my Realtor looking for a home and becoming very discouraged.  On a whim, I had asked to see a home or homes within a 55 plus community – the opposite direction of where I wanted to go and about 10 minutes south of where I am now, but quite close (maybe too close for him) to my son.  I was not thrilled, but did not rule it out either.  On the last day of looking for a few hours, I sat in my Realtors car, put my hands over my face and cried “what have I done”?  I was second guessing myself … maybe I could have stretched the pennies a bit more and just stayed … now the house has a pending contract, a cash deal and I’m closing in 29 days … I have nowhere to go.  At that moment, the realtor’s phone rang and it was her office assistant.  The seller of the home I had not ruled out just lowered the sales price.  I asked my brother in-law to come and see it with me … and the next morning, he and my sister in law came and gave their blessing.  It’s got “good bones” he told me.  The kitchen though … it needs a major overhaul.  My brother in law said he would do the remodel … As my Realtor and they stood in the kitchen talking, I walked into the main living space which I will call my great room and I swear, I don’t know, out of nowhere, I heard my husband’s voice … “make it our home honey”.  I looked at my brother in law and gave him a dollar figure and said “tell me what you can do” … so things moved quickly – I made an offer and it was accepted.  My daughter and friends came and helped me pack one day I am almost completely done.  I will move on the 9th of September, and fortunately, was able to negotiate with the buyers of my current home a rent-back for these 9 days.  The new home will be painted on the interior this coming weekend.  Yes, I am a woman blessed.

The new home is not the home of my dreams; I am leaving that one behind.  My dreams were fulfilled in this home and it is a bittersweet move.  In reality, Keith and I knew that someday we would downsize and oh how I wish we were doing this move together, but I feel his love and presence every step of the way.  I had the pleasure of meeting the new owners on their final walk through last night and they have two small children.  This home needs life again, and I know they are the perfect buyer.  I told them that I hope they love the home as much as my husband and I did and they were so excited in saying, “we do”.  I am happy for them and I am happy to leave them with a home in pristine condition – a reflection of the best parts of Keith and me together.

Consequences – Everything we do in life provides a consequence, sometimes good and sometimes bad.  I truly believed in my heart I needed to be where Keith and I began further north; after all he is buried there.  There is 15 minutes added to my commute to get there (minus rush hour traffic) … I am not readily available on short notice for the grandkids being further away, but as it turns out, they don’t need me like they used to.  My daughter is happily married to the man of her dreams and they have their family dynamics worked out perfectly.  Being closer to my son is just an added bonus and he need not worry about me “dropping in” because that’s not my style.  The consequences of this move are positive ones so far … it was a very wise financial decision and my insomnia should lessen over this issue once settled in.  I am looking forward to living on one level, with two spare rooms for those grandma sleepovers and my essential office equipment.

Life – It continues to happen whether we want it to or not, so I have decided to be present in it.  I am looking forward to a big conference in Washington, DC in November with the ACPMP Research Foundation and I will be starting some volunteer work at my local hospital in the spiritual care department as well.  I hope to meet new people and engage with others again and not sit at my computer 24/7 like I have the past few years.  I want to be healthy of mind and body and the only way to do that is to make positive changes.  I think I just made my first step.  I am choosing life.  I am grateful for my faith to see me through.

“But It’s Painful,” I Cried.

Are they baby steps or are they giant leaps?  I am such a bag of mixed emotions.  There are huge changes happening around me and here I am, almost paralyzed again.  I miss my life.  I miss my best friend.  I miss being loved.  I miss being “in love”.

I have to make critical decisions about my future and doing it without the guidance of my husband is brutal.  Don’t get me wrong, I am quite capable of making decisions but I second guess myself at every turn.  I’ve talked to some family and a few friends, and everything makes sense, but I can’t seem to move in the direction that I need to.

I read a lot of blogs, many of my friends write them and I generally shake my head and think, yes, thank you for articulating what my heart feels.  Most of them write from the same depth of sorrow as me.  I started this almost 18 months ago as a place of self-healing.  Boy was I wrong.  There is no healing from this.  What I mean to say is that it is survivable, but healing is for illness.  I’m not ill, but I guess you could say I’m heart-sick.  I get so frustrated with myself.  Deep wounds such as the one my husband had from his surgery that became infected, needed to heal from the inside out.  I’m afraid I’ve covered my wound with a Band-Aid and it never healed from the inside first.  Society reminds us that grief is a stage, not a place to stay.  I’d most like to say to society right now, F-CK YOU.  This hurts.  Layer by layer my soul is being eaten away by this grief.

No, I have absolutely NOT lost my faith.  I can’t wait to get to heaven – but I have to.  People move on with their lives and here I am.  What a miserable place to be.  My doctor asked me recently if I thought I was depressed.  I should have said, probably.  I don’t believe I am clinically depressed but my life without him is depressing.  It’s very difficult to look for a future when there really isn’t one that I can envision.  I’m tired.  I am tired of feeling like I am chained to a broken heart.  I’m tired of thinking about what am I going to do?  It’s exhausting.  Right after my husband died, I slept very well.  I surprised myself, even.  But the last year or so have been awful for a full night sleep.

I hope my decisions for the future are ones that he will agree with.  Because already, one of our future plans for me has changed but it’s like his death, out of my control.   I know for sure, I am beyond sad.  Many widowed bloggers talk about the second year being the most difficult.  Today I know what they mean.

I have to say that I have always felt that writing my feelings down on paper was cleansing and since starting my husband’s CaringBridge® and sharing his illness and our thoughts and fears with people, I have continued to do that.  I like reading blogs where there is hope and a realization that everything is going to be okay.  I loved writing those types of updates – they were real, honest, raw feelings filled with hope.  I don’t seem to be there at the moment though.

I want to move at a quicker pace and not stay stuck in these feelings.  Despite our conversations, I know he would want me to be happy – I just don’t know what that looks like right now.  I took a step in letting go.  I deactivated his Facebook.  It’s not like he could respond to anybody.  It hurt.  It was painful and I cried.

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.