Survivorship

HOPEspotters:

One of the things I am proudest of on my life resume is the bullet point that belongs to cancer survivor. I’m proud of this ascription, not because of all I did to make that possible - that was really all done for me -but because I know survivorship is a privilege and I’ve  tried to use my experiences for the powers of good.

I’ve been a cancer survivor for 32 years, so I am more experienced in this role than I am as a nurse, a wife, or a mother. As a teenager, I was embarrassed by the title and the attention that came with it. I also understand the role of daughter of cancer survivor (both parents)  and sister of survivor. As a professional nurse, I am grateful for the insight and empathy I believe the experience has provided me.

 I also understand that my cancer diagnosis was not likely fatal, which eliminates a lot of fear. (I’m not sure my parents felt that same comfort at the time of my surgery and treatment.) Additionally, I am clear that my diagnosis was extremely unusual for my age:  unusual has brought with it a lot of uncertainty. 
 
I’m tight with survivorship and the benefits and responsibilities, freedoms and fears that come with the “award”. Someday, in fact, I hope to write a book on survivorship. Personally, I find the experiences of survivors - young and old- both positive and negative - fascinating and important. 

I have always said throughout my cancer experiences I was blessed with: knowledge, advocates, and outstanding family support that included financial resources. It has never been lost on me the fear that newly diagnosed patients must feel that don’t have that trinity of power in their back pocket.  

Today, however, I want to share with you a letter I’d like to send, one of the many I’d like to have sent over the years. I write these never to be sent letters because as an adult survivor and as a healthcare professional, my biggest sadness, shock, frustration has been the black hole that survivors get dumped in, all the time screaming, “what next?”

Recently, I had a CT scan. Six days ago to be exact. The purpose of the scan was to assess the status of my lungs as compared to the last CT scan five years ago. To be clear, I don’t go through life afraid of what might happen next with my old and probably harmless thyroid cancer remains. I’m far more scared of a new and livelier cancer and my job can feed that fear each and every day. But I have this annoying voice in my ear, that I call common sense, and it says, “you have to follow up, Jenny. You are a mother, Jenny.”  So I listen and I hunt around to find a doctor that has seen “people like me”.  And I take the time and spend the money and ask for the scan because it seems like the most prudent thing to do. 

Dear Dr. X:

I am (imaginarily) writing to you to determine if you have received the results of my CT scan from last Wednesday.  

Before I explain to you my disappointment over not having had any contact from you yet, I’d like to “catch you up” on the events of my “CT SCAN DAY”. (I like to write it in all caps and pretend it is a holiday since it cost me $2700 -out of pocket.)

I saw you in your office two months before the “big day”. You repeated what we both knew. My cancer, at my age, was unusual and there’s not a lot of research that you know, if something changes. I suggested we do a CT scan to see if anything had changed and you agreed. (I really don’t like calling the shots).

I waited two weeks before asking your office where my CT orders stood. I was told you didn’t feel like it was necessary. I asked why and then I was told you would order the CT. (Confidence level: ZERO.)

I’ll spare you the details of the hospital’s failures on my big $2700 fun day. (That’s a different letter for them). What I will share with you is this: no one asked me why I was there, what problems I may or may not be having, or why I was having this study. 

Having been diagnosed with lung metastasis in 1985, I’ve had A LOT of CT scans. We’ve discussed the peculiarity of my situation. Every CT study I’ve had has taken 45 mins or more. This study- on my big fun $2700 day- took 8 minutes, with and without contrast. 

Dr. X, either they didn’t do the study correctly or you didn’t order it correctly. I wouldn’t know, however, because you haven’t called me. At all.

Dr. X, I may not be a doctor but I understand the difficulties of responding to multiple acute patients. I understand triaging responses. Your silence, regardless of how insignificant you see my study, is inexcusable.

Because here is what I know about you now, Dr. X, with absolute certainty. You don’t get it. 

You. Don’t. Get. It. 

And I don’t want anyone who doesn’t get it anywhere near me.

Please send me my records. Please accept in exchange my best regards that neither you nor a family member of yours receive the negligent care that you offer, in a time of need.

DO YOU GET IT? This, I believe is the question that sits in every survivor’s heart. Pride and fear keep it from passing their lips.

Do you get it that my left thumb is tingling and I have NO explanation for that but I am only one year out from colon cancer treatment and I am scared out of my mind?

Do you get it that my spouse has ceased to see me as an attractive viable partner and now doesn't ‘want’ me because I’m ‘sick’? How do I handle this?

Do you get it that I am an extremely reasonable and logical woman but it feels WEIRD that you bring me in for breast cancer follow up but we just talk? Do you have X-ray vision?

Do you get that I am ashamed by my anxiety because I am strong and capable? What do you expect for me? PLEASE don’t make me ask.

Do you get it? Do you get It ? Do you get It? DO YOU GET IT THAT I AM TRYING TO KEEP MY COOL AND BELIEVE I AM OK AND UNDERSTAND WHY THE FUCK WE ARE NOT RUNNING ME THROUGH A FULL BODY SCANNER? YOU SEEM CALM. I WANT TO SEEM CALM. BUT LOOK AT THE GOD DAMNED OBITUARIES. IS IT ME? WHY AREN’T WE GOING HEAD TO TOE?????
 
As survivors we will never forget the moment we were told, “you have cancer” or “your results were atypical” or the mother of all cowardess, “your results weren’t as positive as we hoped”  (WTF.. did you want more positive malignant cells??)

I told my super sage sister recently that I plan to buy a beret and a black turtleneck so that I can look legitimate starting a revolution.

A revolution begins when people feel unheard and under represented. Cancer survivors could accrue in the millions to take up this cause.  I certainly don’t have all the answers but life has given me explicit familiarity with the questions.

Why do we, as survivors, feel so unguided?  How do we, as survivors, streamline common sense with present medical protocols. And finally, how do we continue to support the survivor community and learn from them?

 Survivorship is undoubtedly a blessing. Many are denied the privilege. With it comes responsibility and most survivors I know, understand that. Cancer robs us of many things - innocence, naïveté and, frankly, acceptance of bullshit. My army of survivors doesn’t have a lot of time for platitudes or protocols or just because’s…

Sadly, I don’t yet feel in 2018 that we are truly winning the war on cancer, but I can’t deny there has been progress. One of the ways progress is best seen is in the growing numbers of survivors. People who have battled- fiercely- while terrified- but have heard the words “you are in remission” or “we believe you are cancer free”. (Movies will depict these proclamations with violins and crescendo music, but the fact is most doctors mumble these words because even they are scared to say them out loud). 

My imaginary letter to my doctor is admittedly angry but no less than a call to action for the army of survivors. Here is my letter to them:

Warriors:

God bless you for your struggles. Praise God for remaining in the population that could receive a letter to survivors. Too many were denied the privilege.

Please take on the responsibility of survivorship. That responsibility includes continuing self care, following up on your status in spite of how scary that is, inspiring those in the battle and advocating for better ways to care for the army of “us”- survivors.

We are unique. We are blessed. We have battled. We were scared. 

And when you meet Dr. X, and his colleagues, remind him that we make them look good. They owe us care and attention and more than “you were lucky”. We are entitled to understanding of our difference and celebration of our second chance. 

Most importantly, we, Survivors, pray there will be more like us and none like the alternative. No matter what. 

The Agony Of Loss

When I was in nursing school, one of the most vivid lessons I can still recall is when a professor taught us how to easily identify a patient suffering from kidney stones. She explained that patients come into the ER, typically clutching their lower backs and walking frantically in a circle. The professor explained, you can spot these patients because they are “visibly trying to escape from their pain.”

Years later, as a newly married lady, I observed Kevin doing exactly what my nursing professor described, early one Sunday morning,  and a trip to the ER confirmed he had kidney stones. It was clear to me watching him that day that when the pain is so intense, a primal instinct seems to take over in an attempt to get away from the thing that hurts so badly. Unfortunately, the pain is deep inside and there is no easy escape.

Monday night, the University of Georgia suffered a devastating overtime loss to the University of Alabama in the College Football playoffs. The stunning touchdown by Alabama abruptly ended a dreamlike season for the Georgia Bulldogs and its fans who have hungered for a championship for over 20 years. For a large part of the game it seemed that Georgia would be victorious, but Alabama dashed those hopes and stole away a long anticipated joy. And to be fair to Alabama, they suffered a last second loss in last year’s National Championship game to Clemson, so they also know how quickly one’s heart can sink. 

In Georgia this week, it seems as if many of the people I’ve seen are walking around “visibly trying to escape from their pain”. And it wasn’t hard to spot because I’d seen it, in fact experienced it, only 11 months before. In Super Bowl LI, the Atlanta Falcons blew a historic lead against the New England Patriots to lose in overtime and hence deprive the city of a long awaited championship. 

Loss is universal and the band, R.E.M was right when they sang the sad song, “Everybody Hurts”.  For the Georgia Bulldog nation, I really offer my sincere sympathy. I remember how crushed I felt for a long time after the Falcons defeat and as much as I tried to escape it, the pain of the loss, like a kidney stone, was deep inside me. There was no easy escape. It had to be a process- kind of a painful process. 

Now if you’ve read this far and have no heart for sports, you may be making the obvious judgement: such upset over a GAME. As a hospice nurse, SURELY you have perspective on what really matters and REAL problems people face. 

I assure you, I do. And that is why I think it is important to seize a teachable moment, such as the ones sports offer us, to gain that critical perspective. 

The agony of defeat is brutally painful. Even if you are not a sports fan, every person alive can relate to the devastating feeling of waking up and remembering a loss; dedicating the first few moments awake to reliving the pain and sadness. It is shocking each morning, then painfully familiar and it thrusts us out of bed, “visibly trying to escape the pain.” Ask any parent who has lost a child. Or a person who has lost their spouse. Or someone who has witnessed the collapse of what they thought they could rely upon in their life, like their marriage or their career. Their first waking thoughts are to inventory the ownership of what they hold most dear and each morning they have to reintroduce to their brains that they’ve suffered the most devastating loss. 

I remember an episode of “Glee” that addressed the death of lead character, Finn, played by Cory Monteith. The episode was predicated to the actor’s actual untimely death at the age of 31 from a drug overdose. In the memorial episode, his TV mom gave a very compelling performance as she sorts the belongings in his room. She cries that she used to wonder about parents who’d lost a child and how they woke up in the morning and now she knows that a bereaved parent can wake because they have those precious 5 seconds of wakefulness before the painful memory surfaces. And then they remember that everything is different.

So where am I going? I ask myself that all the time. I’ve gone from a painful football loss to the worst pain imaginable- a parent’s loss of a child. I am really all over the place.

Every week when I take my son, Sean, to the allergist for his shots, I pass a church that boldly advertises its weekly bereavement support group. They have a big banner on the front lawn that asks, “Got grief?” Every single time I drive by, I wonder how many chairs they set up for the group meetings. EVERYONE has GOT GRIEF.

No one is going to attend their group and bemoan the Bulldogs or the Falcons historic losses, I don’t think. However, I guarantee you there are people there that are fans and right now they are trying to visibly escape their pain. Because the thing about sports battles is the better, stronger, faster is SUPPOSED to prevail. And every fan of a team believes that their team is better, stronger, faster. The outcome, we lull ourselves into believing, should be fair. 

Losing a child is not fair. Watching a parent battle cancer is not fair. Seeing a loved one succumb to ALS is not fair. More often than not, our greatest battles are not fair. So when a battle, like a sports championship, lifts your heart in belief that good will prevail, it is supposed to be fair. There are rules in sports, after all. There are no god damn rules whatsoever in end stage disease. 

My wonderful mentor tells a perfect story about a day when her newly renovated basement flooded and caused much destruction. When she, who’d worked in hospice for over 20 years, and her husband went to assess the damage, he, after a moment, shouted, “don’t tell me at least it is not pancreatic cancer because I DON”T want to hear it!”

His reaction to what he suspected her response would be is what I imagine and Dawg fans still reading might be guessing I am going to say next. I’m not. You are mad and you are sad and you should RAGE! It didn’t go your way and everything up until that point had you believing that it would and it HURTS!!!!!

We’ve all heard of the expressions “a school of fish” or a “pride of lions”. As the English language has evolved some of the collective nouns used to describe groups of animals have become less used. I recently learned, however, that a herd of elephants used to be described as “a memory”. “A memory of elephants” is a gathering of the most majestic mammals and I, for one, think it remains a perfect descriptor. 

Elephants, to me, are amazing. They are massive. They are filled with love. They leave a deep impression on the Earth where they roam. Grief and loss is also quite amazing. It is massive. It is generated by love. It leaves a deep impression.

I get some reasonable peace if I continue to extrapolate the analogy of a memory of elephants and loss. When the elephants move on, the impression remains. But over time, it does soften. The majesty can’t be forgotten but the hardened footprint fills in with new soil and fresh grass. 

So to my grievers, please accept this as a love letter to you. If you are “visibly trying to escape your pain” that lies deep within, whatever its cause, I am really sorry for what you are feeling. After you have your five seconds of peace upon awakening and your sad truth returns to your mind, know you are not alone. And I fully believe, because I have seen it throughout my career, that no matter how deep the impression made by your “memory of elephants”, it will soften. It. Will. Soften. 

Advent's Ride on the Donkey

Hi Hopespotters!

Confession time: I’ve been feeling guilty. We are deeply in the season of advent,which is synonymous for HOPE, and I have been radio silent. Who am I, as a self proclaimed professor of HOPE, to be silent in this celebrated season? And while my writings are not intended to be religious, I can’t deny the spirit that this time brings to each of us. 

Advent. Hope. A birth. Light. 

Each of the above sits right at the top of my throat in this time, and mostly in the very best way. The Christmas season is sacred to me, as much for the beautiful traditions with which I was raised as for the message of hope in new life. As much as I feel exhausted as an adult trying to produce the magic of the season for my own children, I can’t stop feeling awed by the every day miracles I observe during this time of year. For me, during the season of advent, I have one foot in the spiritual and one foot in the secular craziness.

Saturday, I was deep in a Christmas crater. Near tears, I acknowledged that I had done it again- driven myself crazy trying to produce a magical Christmas. A magical Christmas that includes breathtaking gift surprises, stunningly beautiful decorations, a Christmas card portrait worthy of the royal family and complete, uninterrupted joy for the ENTIRE month of December for everyone I love, especially my children. 

When I looked around Saturday morning, I didn’t see magic. I mostly saw misery- starting with my reflection staring back at me. I was exhausted. My children were wholly disinterested in anything I tried to initiate related to the holiday and therefore appeared ungrateful and spoiled. My Christmas list, let’s be honest- my Christmas spreadsheet that is planned with military execution so everything is equal- was a disgrace of cross offs, arrows and x’s. And let’s please not mention the eviscerated budget that went with that plan. My over decorated house felt cluttered and dirty and I had neither the time nor the energy to begin to address that.

Do you feel me, friends? No. Magic. No. Sir. 

In case you don’t know me personally, here are two things I can’t overstate enough. One, I was blessed with an amazing upbringing that included magical Christmases. For real, months of December where I would lie in bed with the light of the electric candles in my windows, and seize this Goldilocks feeling of everything “just right”. My beloved Grandparents would visit and hearing them move about in the room next door put me to sleep in the happiest way imaginable. Two, I am so crazy about my sons I really don’t know how to act. To be clear, they drive me MAD on the regular and there have been and will be plenty of blogs about the years they take off my life. But, there was a time I didn’t think I could have children and that I have TWO who are healthy and bright still takes my breath away. More than anything else, I want to give them that Goldilocks feeling.

So unfortunately the Christmas season that I’ve treasured has become a garland around my neck. The lists. The expectations. The ELF- lord of mercy, the ELF!!! All of it taking me further and further away from the meaning of Christmas. The manger. The message. The hope. The most Goldilock thing of all. 

Wouldn’t this be a great story if I told you I went to mass Saturday evening, listened to the Word of the Lord and changed my attitude completely? You’re right, it would. And I did go to Mass Saturday evening but my mood remained stressed, tight, unloving.

I have felt, in the first three weeks of Advent, like Mary, riding a donkey, through the night, looking for respite. Yet at each “inn”, reality has spat rejection, just as it did for her. Holy season? Ha! How about sexual misconduct, every day terrorism, natural disasters? Kids with exams, problems at work, all the stuff. I have no intention of comparing myself to the Virgin Mary preparing for the birth of Jesus, but I can feel a kinship to her likely responses in that journey, that might have sounded like, “are you kidding me?” And “Seriously?” And finally, “Is someone filming this because this s--- is bananas!”

But I learned - re-learned- this weekend what Mary was taught and we all must remember. Christmas is lovingly aggressive. Take your “Silent Night” and tuck it away in a precious place- the truth is, the message of Christmas, because it is SO powerful, will find you and grab you and your willingness is not a factor. Maybe the Christmas spirit was found in the legs of the donkey that carried Mary and just kept going until it found “the spot”. 

I woke Sunday resigned to another “failed” Christmas (and to be honest the verdict is still out on that) but I was inexplicably scooped up by a donkey and moved to a better place. Within 24 hours, I had the PRIVILEGE of spending time with a boy, who lost his Mom way too young, but asked me to sing the Rudolph song with him. I gave a small gift to someone who sees the world so simply and beautifully and she responded with the best response I’ve ever seen. I sat with a man who is losing his young wife to cancer but told me -with conviction -that he can only feel peace that she will no longer suffer, and he meant it. And then I came home to a rare and special surprise from one of my boys that lifted my heart and renewed my faith in goodness. 

I am so blessed that I have the opportunity to be part of each of these experiences.  In 24 hours!!  I must fiercely guard my heart to ensure that these things never cease to amaze me.

And to be clear, I am still stressed and worried about making a magical Christmas because I am just that hard headed and dumb. But the collection of today’s experiences allowed me to peak at the manger, to look at the place where hope lies and peace rests. It. Was. Awesome. Thank you, Donkey. Thank you, Aggressive Christmas. Thank you for the real life ornaments that adorn the experience of this season. 

Friends, Mamas, Peeps- no lectures here. I can mess up Christmas like nobody’s business. I like to think, however, that hope is my calling card. And even when, especially when, it seems invisible, I want you to know -- I am actually begging you to look for-- a donkey waiting to scoop you up for a quick manger peak. Advent is a season of hope. Not a season of magic making. The manger was the most imperfect thing ever and yet it delivered the best gift of all time. When the season of expectations starts to wrap around your neck and choke out tears of undelivered perfection, I give you a barn. With hay. And the real deal of “this isn’t how we expected a King to be born?” 

Sit with me in imperfection and honor the manger - and its message of hope- by being present for the real stories of the season. 

Peace and Moxie

The truth is, God created us with resiliency. Mankind is incredibly able to heal, to rise back up, to stare down pain with moxie. Jesus strengthens our minds for the task of recovery. We’ve got chops, girls. Pain is universal; there is no avoiding it, no system that will sidestep struggle. This terrible, mean voice screams out, “What did you do wrong? How did you go so terribly off the script?” when life bursts at the seams, but that’s a lie. Life can be hard because life can be hard. We’re not doing it wrong. What matters is excavating our pluck from the rubble and refusing to be defined by loss. Sometimes it looks like fury, sometimes determination, activated by a flash of our eyes and a straightening of our spines. Rather than cower under its weight, we force pain into a partnership, using it to grow, to learn, to catapult us into a deeper, wider, sturdier life.”

Excerpt From: Hatmaker, Jen. “Of Mess and Moxie.” HarperCollinsChristianPublishing, 2017-06-09. iBooks. 
This material may be protected by copyright.

Check out this book on the iBooks Store: https://itunes.apple.com/us/book/of-mess-and-moxie/id1175955512?mt=11

HOPEspotters, did you read that? Read it again and drink it in like water on a hot day. Take it in like a holy, holy truth.  

I love reading and I love writing and reading what good writers write is like a hot fudge sundae for me. Jen Hatmaker has all the words, knows all the things, feels all my feels and nails it, every damn time. My deep love for her messages is what keeps me from wanting to gouge out her eyes in jealousy of her talent. This book, “Of Mess and Moxie” is as good, if not better, than all her other fantastic books and her podcast “For The Love” 

I’m not here to promote Ms. Hatmaker, however. She has a well paid staff that performs that task more than adequately. I want to go back to this particular passage. It is from Chapter Five in “Of Mess and Moxie”. In this chapter, the author discusses a multitude of personal trials she endured, seemingly all at once, that involved the people in and aspects of her life that she held most precious. Her description of her feelings during this time went straight to my heart and the above passage comes as she rediscovered her own power and faith during her hard times. 

I'm gonna say right here and now with all honesty, and not just to keep me out of copyright trouble, if the opening passage had meaning for you, get this book and read this chapter. Its emboldening. 

There’s a reason I paid extra attention to the words in Chapter Five and re-read it regularly. One of the first things Ms. Hatmaker acknowledges is there are things in her life that she felt were immune from hardship. She writes, “ “Until recently, I possessed a very developed sense of entitlement to my best things. I mostly expected them to live on their own island of protection, tucked away from harm, disease, disintegration. I bought the notion that my own attentiveness and control would maintain the island, and for good measure, I imagined that God Himself endorsed my system. Especially if that particular main thing was used in His service (double immunity!). I invoked “a hedge of protection” around my island like contemporary prayer circles taught me to.” She goes on to say, “I had no idea how addicted to self rule I was or how much confidence I placed in false security”. 

Friends, I’ve had a rough couple of months. Deeply personal issues that seem creepy when described that way have weighed heavily on my heart. People and relationships that are my most cherished have experienced conflict. For me, there couldn’t be anything worse. 

Given this situation, I’ve sought therapy, life change, advice, support, and held on fiercely to fellowship and kindness. This place of pain was foreign to me because it was not brought on by illness or unforeseen misfortune and I did not know where to turn. My sunshine-y optimism wasn’t changing shit. 

I’ve learned along the hospice road that one never knows when the grenade pin will be pulled and one never knows the remedy that can come for fear and pain. The latter is an everyday miracle that I’ll never underestimate. 

For me, in this personal catastrophe, I’ve had a lot of angels, no doubt. I hope, that if a day of need comes for them like some of the recent ones I experienced, that I could share something as helpful, as hopeful, as powerful as Ms. Hatmaker’s words. 

“Life can be hard because life can be hard.”

“Rather than cower under its weight, we force pain into a partnership, using it to grow, to learn, to catapult us into a deeper, wider, sturdier life.”

And I can believe it, because I have seen it. I know that is true. Don’t you? I have had the privilege to know many young ( and old) widow and widowers who’ve made lemonade with their grief and reached out to help others. Cancer survivors who embrace the mantle of survivorship and inspire those still battling. Or how about those in recovery who’ve faced the hell of addiction and lend a hand to men and women still struggling to find a way out? 

If you are looking for the presence of Jesus on Earth, the demonstration of these heroes cause you to look no further. Courage in the face of misery. Grace and Mercy in places of pain. Humanity is places of need. Perhaps I am very, very blessed but I see all of this every single day. I look for it, but I see it, to be sure. 

Pain can be a partnership because, as Ms. Hatmaker said, we refused to be defined by loss. 

Refused. 

Go back to her first sentence, “God created us with resiliency.”  She’s right. She’s RIGHT! Again, not sure? Sit in a NICU waiting room with parents, proudly wearing their “I’m a Dad” and “I’m a Mom” buttons. They might have a 2lb preemie in the unit but their heart is resilient. Or how about the parent that braves pregnancy after a miscarriage? Go to any cause based 5K, and find a starting line full of resilient people ready to prove that the cure to their diagnosis of choice is just a few more dollars away and they are willing to genuinely physically exert themselves to find it. 

HOPEspotters, I know when I am out classed and I am more than willing to admit it. If you are engaged in the message of the HOPEspot blogs, I know you will love Jen Hatmaker, especially “Of Mess and Moxie” and especially Chapter Five. For me, I found it at an essential time and its message spoke to my heart. I’ve shared what I shared because I think/ I know we all have struggles/ battles/ concerns that may not be obvious but are no less painful. Ms. Hatmaker makes clear that fear is no ally in these times and digging deeper for the love of your tribe and your faith in a loving God are the absolute remedies for these feelings. 

Wishing you all peace and moxie.