52 People You Need To Meet: #12 Shawn Ratcliffe

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What I Wish I Knew Before My Son Was Diagnosed with Brain Cancer

I wish I had known how big a role you truly play in the medical care of your loved one. TRUST YOUR INSTINCTS! They are nearly always right and you know your family member much better than the doctors. Also, make friends with the nurses – they can be a huge advocate when you need a different opinion or help in understanding the “system” or even getting past some of the quagmire you encounter with all the different specialists insisting on their unique treatment plan.  Ask to see the “chart” (if they will let you) so that you can better understand just what the doctors might be thinking. If you don’t feel comfortable with the answers you are given, keep asking, don’t be brushed aside as if you are too paranoid (“just being a Mom”), don’t back down, and know that the doctors are doing their best but in the situation of brain tumors their best is still greatly lacking in knowledge and expertise.  Every patient is different, and YOU are the best one to help your loved one. From diagnosis to death is a rollercoaster ride on every possible level, take one day at a time and always look for the positives.

For us, it started out like any other Saturday morning.  Matt and I had breakfast, no one else was up yet. He was off to get his eyes checked as we were sure that was what was causing his headaches. Not long after he arrived at the Dr’s office he sent me a text “They want me to get an MRI”. I was stunned, and in my heart, I knew we were headed for something scary.  Within a few hours, we heard the words that would change our lives forever. “A very large mass on the right front lobe of your brain. It is cancer.” He was 20 years old.  By Sunday afternoon, 24 hours later, the tennis ball size tumor had been removed, or at least 90% of it. Matty bounced back like a true warrior, despite major pain and swelling, and on Thursday afternoon, he and I walked out of the hospital, confident that the worst was behind us.  Naïve, I know.

Within a few weeks, the swelling was so bad that they had to put in a VP shunt.  Within about a month, they removed the shunt as it had caused massive infection.  He was now experiencing Grand Mal seizures, loss of memory and functionality.  Shortly after that, he was fired from his job, and we added major anxiety and depression to our list of issues.    Basically, everything that could go wrong did go wrong.  He continued to focus on school, and within just over a year, he graduated top of his class at ITT Tech. It was truly a highlight of his life.   After 6 weeks of radiation, 11 months of chemo, and 5 stays in the hospital we finally heard the words “no evidence of tumor”, and it looked like we were finally getting a break!

With his confidence at an all-time high, he accepted a job in San Francisco, California, and we moved him out there.  I was, of course, devastated and proud all at the same time.  There were many struggles during the 18 months he was there.  He had just gotten his dream job working for Google when we realized the infection had never really gone away, and two more surgeries would be required.  The first was to remove the infected brain plate and start him on aggressive antibiotics.  Of course, during that time the cancer returned, and by the time they were able to replace the brain plate, the tumor had grown to the size of a fist.  It was stage 4 and angry.  The doctor was so aggressive in the recession of the tumor for the fifth and final surgery that Matty lost half of his eyesight in both eyes, the use of his entire left side, his short term memory, and some of his cognitive skills.  We managed to get him home to Valley Center, Kansas after an extensive stay in the hospital and quickly signed up for a clinical trial through Mayo Clinic.  But to no avail.

Just days after his 24th birthday, we were told there was nothing more they could do.  Matty wanted to go home and party with his family and friends and that is just what we did.  For the 3 weeks and 3 days he was with us, we opened our home to anyone, anytime.  Friends and family came from all over the country to spend time with him, reminisce about the good times and embrace the present, soaking in every moment with him. It was such a difficult time filled with tears, laughter, heartbreak, stress, and always love. Lots of love.

Matthew came into this world on a Sunday morning at 8:53am as a content, happy baby boy and left on a Sunday morning at 8:35am as a peaceful young man ready to let go of this life and seek out new adventures. It was a true privilege to be with my son for both. I cherish the memories that help me never forget, help me learn, help me survive.

During his entire fight my son displayed a kindness and gentleness that I could only watch, I felt none of that.  He always thanked everyone for their assistance and never lost his patience, despite severe pain at times.  He was constantly trying to help people feel comfortable with his cancer, with a ready quip or comeback to make them laugh.  Often times when a nurse finally arrived with pain meds to help with a horrible headache, he would purpose marriage and make them know he appreciated their efforts. I, on the other hand, was tenacious if not demanding when it came to his care and pain management.  His last effort to help others was to donate his body to science.  It was his hope that somehow he just might help find a cure so others would not have to endure what he did.

My wish is for everyone to enjoy today, whatever it brings, and make the most of it.   My son is gone in body, but he lives on in our hearts and our memories.  I am a better person having experienced this pain and heartache, no matter how awful it has seemed at times. It has softened the rough edges, dimmed the harsh blacks and whites and helped me focus more on the moment. I have finally come to a sort of peace with the fact that I’m alive and healthy, despite my desperate pleas that I be allowed to somehow take his place.  Matthew is my hero, and I just hope that I can make him as proud of me as I am of him!  Live, Laugh, Love

 

 

 

 

52 People You Need To Meet: #8 Ellen Ayers

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Hindsight is a great view, but who would put it all together as a deadly brain tumor?  In April headaches, in May anxiety, in June company and total devastation.  Mark loved kids and took our company’s bored teen girls to the mall, Burger King and came home with the stupid BK paper crowns.   He asked me to drive home after going to dinner and later my son said that dad had a hard time with the tip.  Mark was a numbers guy and would state “362 x 14 that’s 5096 right?”  I’d get a calculator.  Back at the house life forever changed.  Mark couldn’t work the remote.  I thought he was having a stroke. He couldn’t finish a sentence, couldn’t even put one together.  We drove right past the closest hospital to the heart hospital.  We happened to know and trust the Neurologist on-call.  I work with him, and Mark had done business with Doc.   Mark had a grand mal seizure in MRI.  He worked out at home and at work, lifting weights, tossing 100lb bags, ran daily, didn’t drink and didn’t smoke.  Mark was combative and wanted to get up and go, and they thought I could calm him down, but he didn’t even know who I was.  It took 8 people to hold him down.  He finally snapped out of it, and Doc asked “Do you know who I am?”. Mark said, “Sure Jim!”  Our smiles lasted only a few minutes…the results…a brain tumor.  Surgery the next day confirmed it was Grade IV Glioblastoma, and no cure.  Mark fought tenaciously for 3 ½ years on trial meds (average mortality is 18 months).  He was only 52yrs old but many are much younger.

I wish I knew there are many other caregivers going through this savage disease, but am blessed I found some now.  I wish I knew what exactly to do when watching the one I loved so much fade away.  I wish I knew how other people’s kindness could overwhelm you.  Friends, family, healthcare workers touched our vulnerable hearts to tears in so many kind ways (the company we had finished their vacation and took pictures with the BK crown in each in honor of Mark, and we laughed and cried when we saw them). I wish I knew time doesn’t really heal, and I will never be back to my “normal self”.  I wish I truly appreciated what I had.  Mark was a unique man who did so many kind acts. I wish to be more like him.  I was blessed and spoiled.  I would have hugged and made love to him even more because a thousand times wasn’t enough.  I would have taped his sweet voice, I miss it.  I would have held my anger at times when he was paranoid.  I would have taken less time at work and more time with Mark (I worried I would lose my job, though they let me work from home many days).  I would have slept with him more in his hospital bed (his legs had to be elevated and it was hard for me to sleep that way).  I would have held him as he died instead of being next to the bed.

I would not have changed the love – always holding hands.  I was honest along the devastating stages of his disease.  We said “I love you” but for 25 years we always had.   You get over grandparents and parents leaving this world before you as expected.  No way can you prepare for years of empty pain, losing a spouse, best friend and lover.  Even in a crowd I feel alone.  I pray I’ve never judged other peoples pain due to loss.  It’s unique for all.  I still talk to Mark several times daily and miss his laughter.  I know what I had was special and some never will experience that kind of love.  I know I was/am blessed but it doesn’t change the pain.

52 People You Need to Meet: Tracie Abbott Langley

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What I wish I knew before my husband was diagnosed with brain cancer…



Four years ago today, my journey with my husband’s brain cancer began. For the previous 5 weeks, my husband had been struggling with headaches which we attributed to a weather change and sinus issues. You see, we had been in Florida for a few weeks and then had to rush home to Kentucky on Jan 11, 2010.  My Mom had been killed by a drunk driver on the 10th.   Mel had been having headaches, but what really made him finally go to the doctor was what he thought was food poisoning. (I was out of town with my Dad during this incident). Mel was hallucinating and vomiting for several days during this episode. Weeks of testing for swine flu, H1N1 etc., proved it was not any strain of flu.  Finally, I went to the physician’s office with him once I observed him with some balance issues and slurring of speech. Once the doc heard my concerns, he ordered an MRI of Mel’s brain.  I thought it was a mini-stroke.  I’m pretty confident Dr. Schumer knew it was a brain tumor, but bless him for not freaking us out prior to the diagnosis.  

On Feb. 16th, my husband finally had his MRI.  I was not with him as we were preparing to leave for Florida that evening at 8PM.   Long story short, he came home, invited a couple friends over for a good-bye cocktail, and dropped the dreaded news on the three of us.  He said “We’re not going back to Florida.  I have a brain tumor, it’s a bad one, and I’m scheduled for surgery Monday morning.  I’m sorry.”  

And so our journey into the horrific world of brain cancer began.  On the morning of my 51st birthday, my handsome, rugged, full of life husband had a craniotomy to remove a tumor the size of a baseball from his right frontal lobe.   I was inundated with booklets and pamphlets by the hospital, many of which were geared towards cancer patients in general, and one entitled “Living with a Brain Tumor”.  I read them all, took the advice to heart and was prepared to fight this beast with every fiber of my being. Mel was ready to do the same. Nothing in those pamphlets prepared me for what was to come.

He was fine for 3 weeks after surgery, recovering amazingly fast and jumping right back into the world of work, friends, and just plain old living.  On March 14th, my beloved had four back to back Grand Mal seizures and was hospitalized, just one of many trips to the ER.   Chemo and radiation began the very next day.  Six weeks of radiation and one year of oral chemo to try to tame this monster.  

What no one told me, what none of the literature prepared me for, was just how this disease would change our lives.  No one could give us an answer to the question ‘how long’, other than there is no cure, this disease is terminal.  It varies, everyone is different.  No one told me of the personality changes that are common from the steroids.  My beloved happy-go-lucky husband became, at times, a hateful, distrustful, paranoid person. He lost muscle tone from all the medications.  He needed help standing, walking, bathing. There were many incidents of horrible falls. I had to be on hyper-alert 24/7.  Medications were to be taken every four hours; handfuls of pills with differing requirements, food, no food, with water, etc. I had no idea how to cope with all of Mel’s needs; I was overwhelmed.  This is when I turned to the internet.  

Thanks to the internet, I found the info I needed.  I found statistics. I found treatment options. I even found a few long-term survivors. Then one day I stumbled upon a page, Cancer Compass.  Finally, I found others who were in this same battle with a loved one. Then I found CarePages, and found more women, just like me, who were struggling to cope.  I found advice, encouragement, and yes, even humor from these women.  They became my lifeline. 

My husband’s battle was short and brutal.  Every day was challenge, every day I was both mentally and physically exhausted. After 5 1/2 months, my beloved Mel was taken by the beast called Glioblastoma Multiforme.  I felt lost in the beginning of this journey, but now I was truly alone, in shock and disbelief and had no desire to live.  I was adrift.  My grief was overwhelming.  

Somehow I survived that first year without my beloved Mel.  In August of 2011, with the help of a dozen or so women that I had met through Cancer Compass and CarePages, through CaringBridge and Facebook, we started a private support group on Facebook.  One geared only towards women, only for caregivers of brain tumor patients. A secret place where we share our sorrows and share our experiences of dealing with all the difficulties of this disease. We give advice, offer support, and hold each other up when we think we can’t stand for another second.  These women have become my friends, and I’ve had the pleasure of meeting many of them in person. Our goal from the beginning was ‘no one fights alone’. We are 249 souls strong now, one of the blessings in my life since the death of my husband.

What I wish I knew in the beginning of this journey was that even though I would lose the love of my life, I would somehow continue to grow, make new and meaningful connections and become a better person because of it.   No one fights alone, and with the help and support of others, you can survive it too.