One Small Gesture CAN Change the World

Dragon Master Foundation, Uncategorized

Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.

My heart may be broken, but I don’t want yours to be. 

There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.

This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.

You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016

How do you answer the hard questions?

Lessons Learned

Whenever I talk to a family about brain cancer, I tell them they can ask me anything. Normally they ask me sensitive questions about the end of life or navigating treatment. But sometimes, tougher questions come out. The toughest one is “how do you go on without your son?” There are many answers to this question. First, would be that my other family members need me. But second would be that my son would want me to be there for these people. It doesn’t make it any less bone-crushingly sad. On the contrary, walking through hell with these families is horrific and hard. It’s been six years since we heard the words brain cancer, a little more than four since David was taken from us. And while many point to the successes of the foundation and the progress in research that we’ve helped with, I can’t see that. All I see is the next person in treatment with no clear treatment path. I’ve been a fairly selfish person for most of my life but now all I see is other people’s need. David always had that sight so maybe he passed some of it along. 

Right now, somewhere a family is agonizing over their loved one’s last breaths. Right now, somewhere a family is hearing that the diagnosis is terminal. I know there will always be freak accidents that steal our loved ones away, but cancer isn’t like that. It’s a disease that we are on the verge of finding cures for, but each day that passes steals away another life. 

People struggle with the meaning of life, but I know that the thing that gives my life purpose is making the way easier for others. That used to be through simple things like doing my job well or making lunch for a teacher at school. Now it is by helping push scientific research forward. And I can do that even though I made a C in Mrs. Coley’s Chemistry class. And you can do it, no matter what your background is. We all have power. We all have a voice. Let’s use it to end cancer now. Right now.

THEN COMES SPRING

52 People To Meet Posts, Lessons Learned, Uncategorized

This post is written by my friend, Lori Hatfield Dickinson. Her words moved me, and I know several other people who could use them right now, so I asked her if I could share them with all of you.

12909463_10156736904935503_176181431140341521_oAs redbuds bloom and tulips turn their heads toward the sun, it’s bittersweet to think of the difference a year makes. It’s spring – literally and figuratively. After months of being quiet and reflecting, I feel a deep burden to write more honestly about my journey with God, grief and guilt.

Last year, fear was my constant companion. I saw spring as an ending. It was the end of a life I cherished with a man and family I dearly loved. There was no joy for us as the world bloomed because Michael was quickly fading.

Despite everything I said I believed at that time, I doubted God. I was mad. I was devastated. I made futile attempts to cut deals with Him, such as, “God, if you will just heal him, I will…” But mostly, I just felt abandoned.

Everything seemed like such a waste. A waste of a man with so much to give to the world – now unable to talk, to see, confused by simple instructions and confined to a chair. A waste of all the time investing in a marriage, a life, future plans that were not to be, all of which was compounded by the helplessness of watching my children lose their innocence without the ability to intercede. In March 2015, I wrote: “It’s as if we are standing on railroad tracks with a locomotive barreling toward us. I can’t stop it or move, so I’m constantly bracing for impact.”

It’s difficult to think anything good could come out having your heart being blown through your chest when you hold the lifeless body of the one you vowed to love and cherish the rest of your life. The primal cry from the depths of my heart when death came is something I will never forget.

In the ensuing days following the funeral I watched sunsets daily from Michael’s grave, sat in the darkness at night staring at his photo, read and re-read letters he wrote to me, smelled his clothes in the closet, and even at times, prayed the world would end. I was never alone, yet, I never felt more alone. Did I really believe there was a God and a Heaven? And if there was, where was He?

I began two “offline” journals. One, written directly to Michael. The first entry was the day he died.

June 15, 2015

You went to Heaven this morning.
I’m broken, lost, empty, alone.
I kissed you over and over.
I miss you.
For the first time since we met, you’re unreachable.
Our son is devastated. Grace is crushed.
I look toward where you’ve always been and the chair is empty.
I’m living my worst nightmare – I’m in a world you’re not in.

A little more than a week later I began a faith journal of sorts. It was a desperate attempt to work out whether God abandoned me or if I was the one who abandoned Him. I wrote to God…

June 26, 2015

When will you comfort me?
I am profoundly sad.
The truth is what I need most.
Give me understanding.
Strengthen me.
Be gracious to me.
Direct me.
Turn my heart.
Turn my eyes.

On June 30, 2015, I wrote and prayed this Psalms (31:10, 14-15):

I am dying from grief; my years are shortened by sadness. Misery has drained my strength; I am wasting from within. But I am trusting you, O Lord, saying You are my God! My future is in your hands!

I wanted to wholeheartedly believe. I just couldn’t.

Contrast that with my entry to Michael on the same date…

June is gone and so are you… I think I smiled more than I cried today when I talked about you.
I count the hours throughout the day – they go so slow. I like the days best where I sleep. I’m seeking God’s will. It’s my only hope for peace in all this. I wish I could be with you.

One day at a time sounds trite, but it’s true. God began opening doors before I even knew they were there. Through the journaling, sleepless nights, questions and tears – He slowly softened my heart. So many years I “served” God out of fear, obligation and pride. But, I didn’t truly know Him, love him, believe Him like I thought I did. It’s not always a priority to build a relationship with God when the world seems right. Now, I was desperate. And as a parent holds a heartbroken child – I started to feel God everywhere.

As I read my posts and journal entries I can see the progression I couldn’t see in the midst of the storm. I wrote only the following words on Sept. 1, 2015, from 19th century pastor Charles Spurgeon in my faith journal that resonates today…

“Don’t you know day dawns after night, showers displace drought and spring and summer follow winter? Then, have HOPE! Hope forever, for God will not fail you.”

God did not fail me, despite my disbelief.

He comforted me through Bible readings, books, church, people and prayer. He still does. He changed my heart and my priorities. I no longer view the world or problems the way I did before. A friend shared God was working faster in some areas in my life than others to make himself so obviously known I couldn’t deny Him. Maybe my heart was truly closed off that much.

In November, I wrote for the last time in Michael’s journal. The words captured what I’ve wrestled with and still do – the guilt associated with my disbelief, grief and survivor’s guilt:

Nov. 10, 2015

Passed our anniversary and approaching five months and the holidays. I don’t feel you around much anymore, but I’m hopeful you’re well.

I feel guilty for living and being able to love again. It doesn’t replace you, but I’m happy. That is a miracle… I’ve cleaned out the closet and I’m getting ready to remodel. I need the house to be different, the space to be new. I’m still sad when I think of you being so sick and the way you died. But, you have taught me how gracefully it can be done.

When I read back I remember all the feelings and emotions, but I also see how far I’ve come. While I may not feel you near, I do know God is, and my life is not finished.

I will never forget you. Your work here was finished, your legacy is big, and your memory will always live on in our lives through the love we now carry forward.

Goodnight Michael.

My pastor asked the question from a series titled, “When God Doesn’t Make Sense:” What if the scene of our greatest disappointment was the setting for our greatest moment? He used the illustration of Lazarus’s story – how with God, a waiting season is never a wasted season and God’s delays are not necessarily God’s denials.

Waiting is never wasted… It’s a paradigm shift for me. Waiting began on Sept. 27, 2013: Waiting on test results, waiting on radiation, waiting on chemotherapy, waiting on doctor appointments, waiting on planes, waiting on MRIs, and then, waiting on death. The time that passes after a terminal diagnosis is at a much different pace. Time passes quickly up to the point of death, then, it crawls – a day is a week, a week is a month and a month is a year.

However, waiting is not wasted when spring comes forth from winter. The trees roots are a little deeper and the world comes alive anew and refreshed.

It is difficult to bless and release the guilt of disbelief I carried in my heart for God through much of Michael’s illness; the guilt of being happy more than sad, seeing another spring… And yes, a measure of guilt for being in love with someone who knows my pain and walks the same path I do. That, in and of itself, could only be a gift from God.

But even as I wrestle with guilt and grief, I feel hope in the depths of my heart and soul.

Hope that God truly answered my prayer of healing for Michael in his perfect way and will.

Hope, that despite my actions, He didn’t or will never abandoned me.

And in surviving an experience I’d pictured to be unsurvivable – Hope that He isn’t finished with me yet.

 If you would like to read more of Lori’s writings, you can check out her blog here: www.thesuburbwoman.com

Choose Hope

Uncategorized

hope sign

This human existence is a strange thing. Full of ups and downs, it seems like we should all get an equal shot at playing the game. But we don’t. For some of us, the journey ends just as it should be beginning. Bright and shining stars extinguished before their light touches everyone. But what about those of us given the gift of time? What do we do with it?

I want to take a moment today, as sweet Jackson is laid to rest, to talk about hope. For if ever there was a family that knows what it means to hope, it is the Jackson/Beezhold family. Articulate and caring, I met them first online through some Facebook support groups. They knew Jack’s odds, which were not good, but they lived with hope every day. In big and small ways, they filled Jack’s years with life –a lifetime of happiness. It was an unbearably short lifetime, but we could all wish to be loved that much.

It makes me reflect on my blessings – among them, this family that I’ve come to know. It takes true faith to find hope after you are dealt a blow like childhood cancer. To know that life is not perfect, but there are gifts – even in the times of imperfection. Today, I grieve with Jack’s family, but I also hope for everyone still fighting. I hope that they will have great joy in as many moments as they can. I hope that those of us not personally battling disease will see what a gift that is. I hope that we will all be empowered with the knowledge that we can make a major difference in this world – through our attitude and actions. I hope that we will all have the vision to see the blessings instead of the curses.

I hope that we will all take moments for ourselves, but that we will take more moments in service of others. We have been given time to play this game of life. And I think one of the secrets to “winning” is teamwork. I’m sad that we didn’t find a cure in time to help Jackson. But I’m not giving up. I choose hope. We have a great big team of warriors depending on us. The bigger our team, the better our odds of winning. I want to give everyone the chance to play the game for as long as possible. I want us all to die as old people who have been given every chance to grow old gracefully. Some will do amazing things. Some won’t. But wouldn’t it be cool if we were all given the same odds?

People You Need To Meet #43: Karin Forbes

Uncategorized

KarinForbesblogpic

What do I wish I knew before my husband was diagnosed with brain cancer? I’ll tell you what I’m glad I didn’t know, because these things are too horrible to know in advance, and knowing these things wouldn’t have helped in this horrific journey…

I certainly wouldn’t have wanted to know how quickly he would  lose his ability to talk, to move, and to eat or drink.

I wouldn’t have wanted to know that he may not have been able to see or hear.

I wouldn’t have wanted to know that he would be told no hope, that there was nothing anyone could do.

I wouldn’t have wanted to know he would be suffering seizures, or about the many, many hospital visits.

I wouldn’t have wanted to know that I would have to make life decisions for him that doctors didn’t trust he could make.

I wouldn’t have wanted to know that that my love who didn’t take so much as an aspirin, would be taking long lists of ever changing  medications.

I wouldn’t have wanted to know how this strong man, who took such good care of himself,  would bloat, and have reactions from medications.

I wouldn’t have wanted to know all the nursing skills I would have to perform with on the spot training.

I wouldn’t have wanted to know how my heart would be ripped apart watching the man I loved suffer and wither.

I wouldn’t have wanted to know that I would see his beautiful eyes fill with so much sadness as he knew he was dying.

I wouldn’t have wanted to know that his life would be over long before his death.

I sure wouldn’t have wanted to know I would lose my husband, my children’s father, my best friend, my confidant, my everything, my world, five months from diagnosis.

I wouldn’t have wanted to know we would never hear, see, or feel anything about him,  ever again.

I wouldn’t have wanted to know the enduring pain to my very core.

I wouldn’t have wanted to know that this man who worked hard every day of his life, would never see one day of his retirement, or one of our retirement plans come to be.

I wouldn’t have wanted to know that our family life as we knew it, would be soon be over.

I wouldn’t have wanted to know my children’s pain from the loss of their dad.

I wouldn’t have wanted to know that some would  add to our pain with words or acts or lack of either.

I wouldn’t have wanted to know the greed some would have after the death of my beloved.

I wouldn’t have wanted to know how some would disappear after his death.

I wouldn’t have wanted to know that my future entailed widow fog and being unable to concentrate.

I  wouldn’t have wanted to know that I would lack desires and no longer love life.

I wouldn’t have wanted to know that I would have post traumatic stress.

I wouldn’t have wanted to know that my health would suffer, and I’d be badly hurt in an accident, or that accidents are common among the grieving.

I wouldn’t have wanted to know the long duration of grief,  and depression I would endure.

I wouldn’t have wanted to know because I needed hope to fight for him. If I had known these things, I would have been too distraught  to function. If this horrific  journey had been given to me in black and white print, I still could not have known the depths of this nightmare. I had to believe in a miracle; I had to have hope.

How I wish that I and the others who suffer had never heard of brain cancer because there were no such thing.

There is one thing I wish I knew…
The one thing I wish I knew was that I didn’t have to be so alone with this. There are online groups of people who share this grief, some are now fighting this monster. They give each other encouragement, love, and knowledge that I so needed in this terrible time.

I now belong to a group of women caregivers who are all on,  or have been on this same terrible road brain cancer takes us down. It’s heartbreaking because I know what they are going through.
I also know that unlike me, they aren’t alone because we band together for each other. We are special Warriors who all wish we had never been in this horrific battle.

Did I learn anything on this horrific journey?
I already knew the depths of our love, and that we would die for each other. I knew of his strength and his heart. We had found out long ago that material things just don’t matter. How blessed we were to have each other and such a deep love! We already cherished every day together.
We didn’t need illness to bring that realization.

I learned that GBM is horrific beyond words, not at all rare, and a thief of the very worst kind.

52 People You Need To Meet: #41 Sandy Perkins

52 People To Meet Posts

What I Wish I Knew Before My Son, Sam, was Diagnosed with a Brain Tumor….

20140913-205314-75194882.jpg

My only child, my son, the light of my life, was diagnosed with a brain tumor in February, 2011 at the age of 19 and passed away 9 months later. What do I wish I had known before Sam was diagnosed? I wish I had known that once your child is diagnosed with a brain tumor, you are instantly and forever transported to a world of duality.

From the moment we heard the words “There is a mass in your brain”, we were thrust into an alternate reality, a different world that spun out of control, twisted on its axis, and irrevocably changed life as we knew it. Normal was gone. There is nothing normal about your child having a brain tumor, there is nothing normal about watching your child slowly die in front of your eyes and being helpless to stop it, and there is nothing normal about having to live every day without him! I’ve been thinking a lot about life now that I am coming up on the 3-year anniversary of Sam’s passing. I realize I now live my life in a constant state of what I have come to call “duality”, the unique ability to feel different emotions and to believe different realities simultaneously. It started with his diagnosis….

Hope and reality
Sam was diagnosed with Diffuse Intrinsic Pontine Glioma, “DIPG”, a particularly aggressive tumor with an extremely low survival rate. Less than 10% survive 2 years, and only 2% survive long term…an average survival time is 9 months! This is the reality we were faced with and lived with every minute of every day until he died.

At the same time there was hope…I thought if there is even one person who survives, then why could that not be Sam? In the face of such grim statistics, I had incredible hope that Sam would be one of the few to beat his tumor! No parent can accept the idea that his or her child is not going to survive…it is unfathomable to believe this will happen and so there is, by necessity, hope. I remember telling our friends at the cabin where we vacationed every July that chances were not good that Sam would be alive to come back the next year…..I knew the reality, I knew the statistics, and on some level I knew he would most likely not survive this tumor, but in the very deepest recesses of my heart I did not REALLY BELIEVE that my son would be gone! The dual worlds of hope and reality!

Child and adult
Sam was 19 when he was diagnosed. He was a teenager on the path to becoming an adult. He had graduated from high school, was attending classes at a community college, and was saving to move out on his own. He was not a child in the typical sense of the word and certainly not in the DIPG world, where the average age of diagnosis is 5-11. That being said, in some ways he was a child. First, regardless of age, he was MY child and would always be my child. Second, he was not fully an adult…he was still living at home, dependent on us financially, and had yet to establish a home of his own.

His first reaction when he heard the words “You have a mass” was to look to us, his parents, for help in understanding and dealing with this horrible thing. The look on his face was that of a child, a look that said “I don’t understand, I’m scared, HELP ME!” As he lost his ability to walk and to move his arms and then to eat and talk he was forced to become dependent on us to help him with the most basic of life functions just as a young child depends on his parents. And yet emotionally and mentally he was more adult than child….very mature for his age (as happens with a lot of cancer kids). He handled blow after blow from this tumor with a maturity I don’t think I could have shown. In some ways he was a child and in some ways an adult….the dual worlds of parenting a child and an adult.

Holding on and letting go
When Sam was first diagnosed I read about DIPG. I read how these children gradually lose every physical ability bit by bit until they are no longer able to walk, move on their own, eat, swallow, talk, all while remaining mentally aware of what is happening to them. I was stunned that this could happen to our children and there was nothing, I repeat NOTHING to do to stop it. I could not believe this was what was in store for Sam…how could my child, my sweet Sam have to endure this torture?? And so I hoped beyond reason that he would beat the odds and survive! However, that was not to be and his tumor did progress.

I love Sam with every fiber of my being. I could not begin to imagine life without his smile, his hugs, his gentle teasing, his ability to sense my every mood, his very presence. I hoped and prayed for a miracle, for something to stop this tumor and make him healthy again, until one day, one horrible, devastating hour I realized he was not going to get better, he was not going to be able to walk or talk or eat again and the only way for his suffering to end was for him to leave this body. And so while my heart was screaming “No, don’t leave me:”, I started praying, no begging, for God to stop his suffering even if it meant I would lose my son. How can one heart pray for two totally opposite things? Duality….holding on and letting go….the single hardest thing I have ever done!

Pain of loss and feeling love
At first there was just numbness. Then as the numbness started to wear off, I felt the excruciating, all-consuming, raw pain of having had my heart ripped out. Gradually there were times when the sharp pain receded, and instead the pain was more like an ache, intense and ever present, to be sure, but not as sharp or raw. That is where I am now. The pain, the ache is always there, but at times it reverts to the raw sharp all consuming pain. It takes my breath away and renders me incapable of doing anything other than getting through, trying to ride the wave until the tsunami subsides.

During the time between tsunamis when the pain is still there but more of an ache, I can enjoy conversations with friends, a beautiful sunset, the sight of eagles flying over our lake, the silly antics of my dog, the love of my husband and family. But during all of those wonderful things the pain is still there….it doesn’t ever totally recede. I still feel the pain in the midst of laughing and loving and appreciating nature, and sometimes the more I laugh and love the more I feel the pain.

Despite this constant pain I feel love and compassion more deeply. I love my husband, family, and friends more than I did before with a much deeper appreciation for their presence in my life. How does a heart feel so deeply this duality of intense pain and deep love at the same time?

Happiness and sadness
Before Sam was diagnosed with a brain tumor my emotions were simple. I was happy or sad, angry or pleased, content or not content. Emotions came and went, but they usually came one at a time. Now I see a picture of Sam I haven’t seen before and I am brought to tears and laughter at the same time….laughter for the joy of seeing a glimpse of him I had not seen and tears from the pain of knowing I can no longer see him in this world. I look at his drums and smile at the memories of him and his band practicing in our living room and the excitement he had when a practice session went well. At the same time I am in tears knowing I will never see that look of excitement again.

I remember lying next to him on his hospital bed holding his hand and keeping him company when he could no longer play video games or even watch TV to pass the time. It is exceedingly painful to remember what Sam endured in those last months, and yet with that pain there is a deep love and gratitude that fills my heart at having been blessed to be Sam’s Mom and share that sacred time with him. Multiple emotions now live in my heart …. It is rare to feel only one emotion at a time….Duality!

Living and not living
First let me clarify that by not living, I don’t mean dying. I’m referring more to the feeling of just existing and getting through the days until I am reunited with Sam. This is in contrast to living fully in the moment and appreciating that I am alive. This isn’t exactly a duality since it’s not really possible to do both at the same time (I don’t think) but I move in and out of the two frequently. Some days, especially when the tsunamis hit or it’s a particularly hard day, I consider it a success to have just gotten through the day and willing to try again the next day. It is okay, I believe, to have days where just existing is the best you can do. Those are the days where I drag myself out of bed feeling like I have a 100 pound weight attached after lying awake a good part of the night thinking of Sam and waiting for morning to come. But then morning comes and I can barely get out of bed (there is that 100 pound weight after all), and it is all I can do to get dressed and sit in front of my laptop, eat a little, and wait for it to be time to go to bed and sleep and hope to dream about Sam.

Then there are days when I am motivated and feel alive. Some days I just feel more at peace and more secure in the knowledge that Sam is still here with me, and I truly believe that by enjoying life and the people in my life Sam is also enjoying these things. I know I need to truly live life, not just exist, in order to honor Sam. On those days I feel good knowing I am living life “for two”. I know he understands my difficult days, but I also know he is happier when I am enjoying life. How do I know this? The same way I knew when he was having a bad day or was upset when he was here physically…a mom just knows! Living and not living…. I am trying to fully live but giving myself permission to have days when just existing is the best I can do.

Physical and spiritual world
There is no question that Sam is no longer here in the physical sense. It will be 3 years on November 14th since I last held my son, saw his sweet face, held his hand, and looked into his beautiful brown eyes. He is still the first thing on my mind when I wake up and the last thing on my mind before I fall asleep. I miss him immensely with every breath I take. Before Sam died, I didn’t often think about what happens to our soul or spirit when we die. I had a vague sense that yes, there was an afterlife but really gave it very little thought. Since his death, it has become an extremely important concept to me. I have spent a lot of time thinking and reading and praying about what happens when we die. I am convinced that life continues to exist despite the loss of our physical body. I truly believe that Sam is still alive. I believe that the death of our physical body is our birth into a new and different realm where we will be reunited with our loved ones. I believe this not because of what I’ve read or what others say but because I continue to feel Sam’s love, and I continue to feel his presence when I most need it: a sign here or there when I am feeling lost and need to be reminded he is still here or a sign when things are going well and he’s letting me know he’s happy. I am coming to realize that I will always be living in these two worlds: the physical one where Sam is no longer and the spiritual one where Sam is alive and healthy and happy. On a good day when the two worlds combine, I can feel his presence and his love and that is when I feel a little peace. The physical and the spiritual….I strive to be able to merge the two!

20140913-205237-75157481.jpg

Maybe I Should Take Up Surfing

Lessons Learned

The funny thing about grief is you never really know when it is going to hit. You prepare for milestone dates, and they pass with hardly a tear shed. And then someone makes a random comment or you see a person with a certain look and BAM! You are slammed by a wave of grief right into the bottom of the ocean. Daylight doesn’t even filter down that far. You are lost, grappling for something – anything – that will point you toward the sky. It feels like forever before you break through the surface and take that first full breath again.

You bob there on the surface, treading water, and wondering how you actually managed to float again. The darkness is still down there, pulling at your feet. But somehow, your head is clear. You can breathe and the sun beams down on your face. There is promise in those warm rays, even as you can still feel the cold depths below.

I’m not sure if I’ll ever be on solid ground again. It feels like grief will never let you past the shifting sand on the shoreline. But I do know that there is always the sun. Some days strong, some days hiding behind clouds, but always there to give you a ray of hope. Maybe one day, I’ll be able to ride on top of those waves and feel the sun all the time.

People You Need to Meet #38: Clint Murphy

52 People To Meet Posts

What I wish I knew before my mom got brain cancer… the value and limits of time.

Last picture with mom

For me, Friday, September 12 was like any other day in the life of a presidential campaign staffer. Working from dawn to dusk, doing everything and anything to push the ball just a touch forward in the task of getting John McCain elected as the next President of the United States. I lived and worked in Tallahassee, FL and was the Deputy Southeast Regional Campaign Manager for McCain for President.

That night, a few campaign staffers and I headed up to Marietta, GA for a GOP Unity Rally on behalf of Senator Saxby Chambliss and the Georgia Republican Party. Nearly a thousand Republican volunteers from throughout the state would be congregating, and it was a perfect time to sign up volunteers, recruit people for coalitions, and generally show the flag on behalf of Senator McCain. I had arranged for the Senator to call in to the rally and express his thanks for their support.

The night before I had talked with my mom, and I got the impression she wasn’t feeling well. During the day on Saturday, I talked with her and again got the distinct impression that something just wasn’t right. She insisted that I call her when I got back to Tallahassee that evening and that I shouldn’t worry.

The event was a success, and we were all excited about having gotten so many people signed up and engaged in the campaign. In the months before, the Obama campaign had placed staff in Georgia and tried hard to make Georgia competitive. With nothing but volunteers and me and my teams’ efforts from Tallahassee, we organized the state, built coalitions, and flexed our muscle via earned media events and scared the Obama staffers out of Georgia and into North Carolina.

I dropped everyone off at their respective homes and was entering the code to get into my apartment complex while I was on the phone with my mom. The sun was setting on what had, for me, largely been a great day. Up until that point, Saturday, September 13 had been a very successful day, and I was excited about the future. For my mom, it would be an entirely different story.

As I spoke to her, mom seemed so calm as she described to me the events of the night before and then, with what seemed to come out of nowhere, she said, “They found a mass in my head.” I believe my initial response was pure disbelief, and when she confirmed for me what she had just said, I immediately started to have a panic attack. I had to hang up the phone because I just needed to scream as loud as I could, something that I had honestly never done and have never done since.

I called back and spoke with my cousin who walked me through the events of the following day, which lead to this grim discovery. On Friday, my mom had noticed that her tongue felt thick. She called her various doctors and sadly, none of them returned her calls. She called my aunt and they decided to go to the emergency room.

Initially, my mom was told that it was likely an allergic reaction to something and she was given a prescription for an EpiPen. While getting the prescription filled at the store, mom had a full seizure and back to the emergency room she and my aunt went. It is then that they performed the CT scan and found the mass.

I wanted to drive back to Savannah right away, but between crying and already being tired, I couldn’t see clearly to do that. I went back to my apartment and began to research everything and anything as it related to brain tumors. Everything I read made me even more upset. Eventually, I went to sleep as I was crying so much I could barely see the computer screen, let alone make sense of anything I was trying to read.

The mass was large, and it had tentacles forming something like a dumbbell in my mom’s brain. The CT and MRI had suggested a Glioblastoma Multiforme Brain Tumor (GBM). A GBM is one of those diagnosis that, by and large, has had very limited hope for a long time. Innovations in treating, let alone curing, GBM have not been forthcoming. Having been so involved in politics, I knew that Senator Ted Kennedy had been recently diagnosed with the same tumor and had successful surgery to remove the tumor. I went to work researching where he went to have that done.

My mother seemed so calm as we sat in the hospital room the night before her biopsy. She wasn’t crying and showed no sign of even being nervous about what might lie in front of us. I on the other hand was a mess. I tried to keep a brave face, but I couldn’t. I was scared, sad, angry, and just about every other emotion you can imagine.

We scrambled to get all the necessary forms completed in advance of the biopsy because I was informed that if the tumor were operable; they’d likely go ahead and remove it at the same time. Worried about what condition my mom would be in afterwards, I didn’t want to leave anything to chance.

It was random chance that my aunt and I were walking down the hall when the surgeon came out of the operating room. He informed us that the tumor was inoperable and that it very much looked like a GBM, but would need the path report to confirm that diagnosis. Based on what he saw, he said he thought my mom had less than 3 months to live. We were dumbstruck and heartbroken. Even writing this now, I can feel that helpless feeling that I felt that day in the hospital. With everything in my being, I felt that those words just couldn’t be true.

In researching Senator Kennedy’s experience with a GBM, I saw that he went to Duke. He had surgery, was getting treatment, and doing relatively well, all things considered. I called Duke, got all the information to get a second opinion, and camped out in front of the path lab waiting on the slides so I could send the package to away in hopes my mom would be accepted as a patient.

There was no way that I could or would accept that my mom had less than 3 months to live, thus I went on a one man campaign to ensure that she got into to see the same surgeon that worked on Senator Kennedy’s tumor. My goal was to give my mom the best chance that there was to ensure she would survive this diagnosis and disease.

My mom’s 3-month diagnosis turned into an incredible 18-month experience. Through all the ups and downs over those 18 months, you might be surprised to know that, aside from the initial conversation about her possible death just before the biopsy, my mom and I only talked about her death one more time.

In February of 2010, mom and I made our final trip to Duke. It was on this trip that we had the final conversation about her possible death and she laid out for me her thoughts, as best she could, on the experience that she had gone through in fighting this tumor.

The doctors informed us that the tumor had started to grow again and that we were running out of options and were likely at the end of the line. Most people at this point would assume that we would have had Hospice assistance, but we didn’t. Even after returning home, we still did not have Hospice.

On the return home, mom shared with me that she had few regrets in life. She would do a few things differently, but all in all, she was pleased with how her life had turned out. She wasn’t angry that she had this tumor, nor was she angry that God was cutting her life short. She felt that it had all happened for a reason and that she was confident that God would use this experience she was going through for something better. She had a few people that she wanted to talk with before her journey was over and, if possible, wanted to make a trip to Hawaii. Her strength and bravery was just amazing. I was in awe.

On the other hand, I was a mess. I spent every moment of my time not spent working or taking care of mom, researching other treatment options, calling medical centers, and sending medical records to get another opinion. Sometimes those calls were so hard that I had to call back because I couldn’t control my crying. I was not prepared at all to lose my mom. I was not ready.

On February 28, my mom fell down and hit her head. She seemed fine and the doctor from Duke spoke with us and suggested that unless she seemed to be in pain that we wait and take her to her primary doctor in the morning. Mom seemed fine the rest of the day and evening, however the next morning she began to go downhill.

That Monday, I still thought we had more time! I spent the morning with her and then ran errands in the afternoon to go ahead and purchase the cemetery plot, send off yet for another 2nd opinion, and then have a conversation with my mom’s nurse at Duke about a possible hospital to hospital transfer. The nurse from Duke was the one who actually told me that we were at the end, and that there weren’t other options or opinions and that what my mom needed now more than ever was to be given permission to die. To acknowledge how hard she fought, but to let her know that it was okay for her to let go.

I returned to the hospital, and together with my family and a couple of my mom’s best friends, we sat there with her. By this time she was in a coma. I asked everyone not to cry or be sad while we were with her. We talked about my mom’s favorite flowers and a tear shed from her eye. The nurse at the hospital told me that this could last just tonight or could go on for some time, but almost as quick as she said that it seemed to come to an end. I told my mom how much I loved her, and how proud I was of her fight. I assured her that she would be going from my arms to the waiting arms of her mother and father, and that all would be okay.

Without notice, mom woke up and looked right at me. She turned her head to look at her sisters and friends and then took her last breath. Her death was both peaceful and beautiful.

When it was over, then I cried. I cried out how much I wish I had done more. I cried at how sorry I was that I hadn’t done more. I cried because while she was at peace with what she had been through, I was not, nor was I even ready. I felt like I needed more time.

—-
Mom Hug

Since my mom’s death, I have gotten involved with the National Brain Tumor Society as the Lead Advocate for Georgia. Additionally, I am a brain tumor caregiver mentor with Immerman Angels. I want to use the experience I went through and the lessons learned to help others going through a similar situation and try my best for the experience my mom went through to be used to help benefit others.

It should be noted that when I read Senator Kennedy’s book, True Compass, he referenced his own desire to share his experience with GBM so that he could offer hope to those who faced a similar diagnosis. Knowing Senator Kennedy’s experience showed me the path to hope for my mom, and for that I am grateful.

You Can Create Your Own Good Day

Lessons Learned

Today started badly. Like, no sleep all night and bad feelings heavy on my mind kind of badly. As I was getting ready for my day, I looked in the mirror and was kind of shocked at my reflection. The weight was clearly written in my face. I could have easily taken a mug shot and looked like I was in a police lineup.

The issues on my mind were big. Grief is always mixed up in there somewhere, and today had some extra issues. Grief and the other issues are all mostly beyond my control. I can’t control circumstances or how other people will react to them. What I can control is my reaction.

So, today I chose to use the old adage “fake it ’til you make it.” And the world – for the most part – didn’t let me down. From some positive messages from friends to really awesome co-workers to family that always has my back, I made it through the day one encounter at a time. My first encounter was an opportunity to bend a rule and help someone in need. I told them that I was having a bad day and so I was going to do something to make their day brighter. It was a big step toward turning my day toward the positive. And when I went to wash my face tonight, I could see the difference on my face.

After a long day, I actually looked better at the end of the day than I did at the beginning. My eyes were brighter. My face had more color. I looked like someone I could recognize. I like that person far better than the person from this morning.

I thought I’d share this observation about morning me vs. evening me because I know a lot of you struggle with difficult days. It may not work for everyone, but I challenge you to give it a shot.

52 People You Need To Meet: #24 Beni Hood Fries

52 People To Meet Posts

I am always intimidated by having to express into written word how I feel. I often feel that my words are inadequate; however, I was deeply honored when asked to share David’s and my story and to contribute to the poignant, powerful and touching blog “52 People You Should Meet”. The question posed to us was,” What I wish I had known?” This is obviously a very thought provoking question and not easy to answer.

David and I were married at the age of 21. I can honestly say that we did not know much at that time in our lives; however, being young, dumb and in love, we were sure that we could conquer the world. We did not exactly conquer the world, but we did build a good life. Over our 27 year marriage, we raised three children, adopted a few pets, learned many lessons (sometimes the hard way), made multiple moves, made many friends, shed a few tears and had many, many good laughs. Although, our life was not perfect, it was more than good, and we were most definitely happy. I knew that we were blessed. In the spring of 2007, our world literally crumbled around us. I do not think that anything could have prepared our family for the road that lay ahead of us.

In early April of 2007, David started to experience an odd warming or tingling sensation in the right corner of his mouth and the pads of his thumb and forefinger of his right hand. They were infrequent in the beginning but over time increased. The first time he told me about it, I actually laughed at him. I wish I had known that something so innocuous and seemingly benign were actually focal seizures. Those sensations were the first known signs of David’s brain tumor. It took until June before we knew what we were dealing with.  I can say with confidence that knowing about the brain tumor earlier would not have changed David’s outcome; however, the complications from surgery may have been less had the tumor been smaller when it was removed.

When David was first diagnosed with the brain tumor, I thought the worst of the worst had happened. I was wrong. In November of 2007, a virus settled in David’s spine and left him paralyzed. Although unusual, this was probably caused by his cancer treatment. He spent the next three months in three different hospitals. I watched horrified as my husband’s dignity was stripped from him. I spent countless nights sleeping in hospital chairs and learning how to care for a paralyzed patient. I was able to bring David home in February of 2008 and did my best to care for him. It was a privilege and honor to be David’s caregiver, but it was the hardest thing I have ever done in my life. I watched helplessly as he lost hope and became weaker each and every day until he died on July 19, 2008. It was gut-wrenching. I have said multiple times that had I known that he was going to spend his last days and months paralyzed and miserable, we would not have done treatment after his surgery. Instead, we would have just enjoyed what little time we had left together. With that said, I am not sure that it is possible to enjoy time with a loved one while waiting for them to die.

So many times, I have asked why? Why did a good man have to get sick and die? The answer has to be, why not? I drove myself crazy trying to understand how a young, vibrant, active and healthy man, could get so sick with brain cancer. Did he eat something? Was he exposed to something?   The truth is we will probably never know those answers. Life is not always fair, and really bad things do happen to really good people. I have also asked more times than I can count, did we do everything we could to save him? And yes, we did. We sought the best treatment from one of the best brain cancer centers in the country. David had Glioblastoma Multiforme which is the deadliest form of brain cancer there is. There was no cure for it then, and sadly, there is still no cure for it.

“What I wish I had known?” After thinking long and hard on that question, the answer is nothing. Life is not meant to have a crystal ball.   I personally think that knowing ahead of time about the wonderful surprises we will experience during our lives, will only dim their joy. And I think knowing ahead of time about the horrible things life will hold for us, will only paralyze us and prevent us from living fully and experiencing all the joy we can. As cheesy as it sounds, life is meant to be lived wholly and completely, and that cannot happen if we know what life will hold for us.

After David had died, it was almost impossible for me to wrap my head around the fact that the world kept going virtually unaltered, and my life was in pieces around me.   The pain was so intense that it literally took my breath away. The visions of that thirteen-month nightmare lived with the kids and I for months and even years. In fact, for a time, I was afraid that I had lost the previous 26 years because all I could see was the nightmare of the last 13 months of David’s life. Thankfully, over time, the good memories did return. I can say that, for the most part (we still have some bad days), the kids and I are doing well now. It has not been an easy road, but we have learned to experience and treasure life’s joys again. We have also learned not to feel guilty about it.

I always knew that David and I were blessed (and I still am) with an amazing family and wonderful friends. I will never be able to pay forward all of the love and kindness that was shown to us during David’s illness and the years following his death. My kids and I were shattered and shut out much of the world around us. Fortunately for us, our family and friends showed a lot of patience and did not give up on us. They were waiting when we were ready to join the world again.

We miss David each and every day, and it is not necessarily worse during holidays or special occasions. Although days like today, Father’s Day, still sting a lot. David was an amazing dad and loved his children tremendously. I have no doubt that David looks down on his adult children with nothing but pride. I see a piece of their wonderful dad in each of them and that brings me tremendous comfort. This is the sixth Father’s Day our children have had to whisper “Happy Father’s Day” to their dad and hope he hears. I know he hears…

With David Always in my Heart,

Beni

Editor’s Note: This post is about David Fries, Beni’s husband. It is not the same David that is mentioned in normal blog posts. David Pearson is my son’s name. Sorry for any confusion. – Amanda