52 People You Need to Meet: #37 Sue Jarvis

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Sue & Megan Jarvis

Our daughter, Megan, had suffered from headaches for years which doctors said were migraines. However, on December 1, 2004, an MRI revealed our worst nightmare. We got the news no parent wants to hear – “your daughter has a brain tumor.” Our lives would be changed forever that day.

A biopsy revealed a grade two Oligoastrocytoma.   After three surgeries and years of chemo, fast-forward to August 2009, her tumor had now progressed to a grade four Glioblastoma.   This time treatment would be radiation and more chemo. Fast-forward to February 2012, more words no parent wants to hear – “Megan’s tumor is growing, and we have run out of options. “ Basically, nothing more we can do for your daughter, and then I asked the dreaded question – how much time does she have, and the dreaded answer – six months. So we took that special trip, had fun with family and friends, ate good food and we didn’t focus on what was going to happen tomorrow.

On August 10, 2012, Megan passed away from this terrible disease. It was a long journey of so many ups and downs that Megan handled with such grace and dignity – never complaining. She had a beautiful spirit that shined through in how to live day-by-day with the challenges of a terminal illness.

Six months after Megan’s death, I found the following paper she wrote for an English class at Old Dominion University. The paper was a hidden gift to us, as Megan was very private about her illness. It gives such an insight as to what life is like with a brain tumor. Megan just wanted to live a normal life like any young adult.

“English 101
Megan Jarvis
March 6, 2008

I believe that life is something that should never be taken for granted. In my first year at college I have met many people who do this every single day, not thinking anything will happen to them; that they are untouchable. I, like any young healthy person, thought that I would be fine forever, but realized that disease does not discriminate. It can affect anyone at any time, no matter how perfect they think their life is.

When I was sixteen years old I found out I had a brain tumor. I had three major surgeries, each setting me back physically and mentally. I had to deal with pain, speech therapy, seizures, chemotherapy and radiation. It has been hard, but it has helped me understand how precious every little thing in one’s life is. Since the surgeries it has been hard for me to remember my friend’s name, drink a cup of coffee, drive a car, swim, or play my piano. It is even more difficult to take a piece of paper and write my thoughts into words. Another thing that is different is all of the medication I am on. Before this I never took any medicine, and now I can’t go a day without it. It is a lot to remember and also come many side effects. The worst is when I become toxic, which has happened many times. This hurts me the most by having to miss important things, like school. I had to be home-schooled part of my senior year. I have lost almost all of my short-term memory and have trouble finding words. This can be very frustrating.

With things being the way they are, it is distressing for me to see people act in ways that are so perilous and think nothing of it. They won’t wear their seatbelt in their car; they don’t need it. They start smoking cigarettes; it makes them look cool. Lying out in the sun all day is smart and makes them look better. And after all of these things, they believe they are so healthy that they have no need for medical insurance. Then they start with their complaints – I’m not getting paid enough, I don’t like my car, I’m not tall enough, my clothes aren’t pretty enough. I want to tell them to stop wasting their time complaining about these petty things that don’t mean anything. Start appreciating things that do matter. Volunteering in a hospital I have met many elderly people with terminal diseases. When talking to them, almost all say that their sickness is due to decisions they made when they were young.

I met a person at school and when I told him about my situation, he was surprised at the way I was living my life. He said with something like this I needed to carpe diem, or “seize the day”. That was the motto by which he lived. And I did agree with him. Eat, drink, and be merry is something everyone should do; live a happy life. But don’t lose concern for the future. I told him my saying is memento mori, “remember that you are mortal”. Life is something that’s value should not be underestimated.

I know what I have experienced is more than significant. It has completely changed my life. Everything now is opposite of what I had planned it to be. It did have some good with it though. I was able to meet so many great people, people who have gone through much more than me. It showed me that I have more friends than I ever thought I did. It showed me how kind people are, but unfortunately how unkind others can be.

I am strong inside, not fearful of my future. I don’t look ahead, just the present. I don’t even know what I am doing tomorrow. I was never scared of what was going to happen to me, and I was the one holding up my family through the ordeal. I don’t know what I want for the immediate future. I think my goal is to just get through another day and see what happens from there.

My life is nowhere close to where it was before any of this happened, but I wouldn’t change anything.”

Megan had wisdom beyond her years like so many children and young adults who have to deal with cancer. Their lives remind us that it’s not the number of years we are given, but how we use them.

The question of what I wish I knew before Megan was diagnosed. I wish this were all a bad dream! I wish I wasn’t in the grieving parent club that I didn’t ask to join. Someone I knew who had also passed away from a brain tumor last words still stay etched in my mind.   Confront reality, confront the end.

I thought I knew what life would be like after Megan was gone. I thought I would be prepared. But no one can be prepared for death, let alone the death of their own child. I knew how this story would end.  After all, you don’t read of too many people living a long, full-life with a GBM. Sometimes statistics don’t lie. But that’s not to say we ever gave up hope. I grieved for many years being her mother and primary caregiver and watching her go through so much pain and suffering. That grief journey is over and now I’m on a new journey. Learning to live with the loneliness and emptiness. Learning to live with the reality that my hopes, dreams and future for Megan – gone. All the thoughts of what could have been, should have been, would have been – gone. From the time Megan was little, she always wanted to be a doctor – ironically, a Neurosurgeon.

So for my future – I will strive to live my life with Megan’s positive attitude, courage, perseverance, compassion, faith and living for today like there may be no tomorrow on this earth. I do believe there is hope that each day can get better – it’s a minute-by-minute process that may take me a lifetime to achieve.

Megan, may the wind be always at your back, and may the sun shine warm upon your face. And until we meet again, may God hold you in the palm of his hand.

Love Mom

52 People You Need to Meet: #13 Stacey Gravina

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

StaceyGravina

On July 27, 2011, after fifteen days, three hospitals, a CT scan, medically induced coma, intubation, an MRI, a spinal tap, a craniotomy… we received the diagnosis: Brain cancer ~ Gliomatosis Cerebri with Anaplastic characteristics. Gliomatosis Cerebri = a rare brain cancer that is highly aggressive and very resistant to treatment. These malignancies are not lumps like other tumors, but cancerous threads that spread very quickly and infiltrate deep into the surrounding brain tissue, or into multiple parts of the brain simultaneously, making them very difficult to remove with surgery or treat with radiation. Gliomatosis cerebri is extremely rare, with fewer than 100 cases diagnosed in the United States each year. Anaplastic = A term used to describe cancer cells that divide rapidly and have little or no resemblance to normal cells. And the prognosis = 6 months to a year.

One year and four days from that day, my beautiful, energetic, full of life, silly, fun, compassionate, loving 8-year-old little boy was gone. At that point all of that medical jargon really didn’t matter anymore. The 12 months of searching for a cure, trying everything that we came across that we thought might help him even a little bit, traveling across the world to Germany for one final attempt at a cure… none of that mattered.

On Tuesday, he should be turning 10 but instead on Tuesday, it will be 20 months since he went to heaven. Before he was diagnosed with brain cancer, I wish I had known he would never be 10… not even 9…

I wish I knew the value of every moment of every day and how we should have taken advantage of that before and after he was diagnosed. We did celebrate him and share him and our journey with the world… or at least as far as our world reached. But we also spent a ton of time trying to save him. That’s what a mother does, right? We are supposed to protect our children and make it all better… no matter what. I can’t imagine doing it any other way but at times wish we had. I might trade some of the time it took to get him to take his many pills, which included many natural supplements, with some cuddle time (although he took them like a champ). I might play a game instead of trying to get him to drink his “green drink” or eat his Budwig protocol concoction (not so much a champ with those). I might keep him in the comfort of his own home surrounded by his friends and family instead of flying him to Germany because I just couldn’t give up hope that there was a cure out there. Or maybe if given a do-over, I would do it all the exact same way because how can you not do everything you possibly can to try to save your baby? They say hindsight is 20/20 but I’m no clearer now on what happened, or why it did, than I was on July 27, 2011. In fact, I feel more lost than ever. I wish I knew that I would go in circles over things like this and that as soon as I was comfortable with the decisions we made, I would start all over again with questioning everything we did.

I wish I knew how others would deal with my grief. It is true that you find out a lot about people when you go through something like this. It is truly shocking who is there through it all and who disappears. In your greatest hour of need they just disappear… Some people that you never thought would be there, step up to the plate and some people that you expect to be there, just aren’t. We make them feel uncomfortable, they think we need to move on or they just don’t realize how much we still need the support. I am sure I’m guilty of this because I didn’t always know how it feels. And even now that I have faced the worst thing that could happen, I don’t always know what to say to other moms in my position. Through this you definitely see true colors… it is eye-opening and somewhat freeing. I wish I had known.

I wish I knew that people would avoid talking about him. That it would feel awkward to talk about him in front of some and that I would have a need to seek out those who would listen and equally enjoy hearing his name. I wish I knew that most people who will ask how you’re doing won’t really want the truth… especially if it’s more than six months out. I wish I knew I would have to work daily to keep his memory alive, to continue parenting him, to develop my new relationship with him and his with the rest of the world.

I wish I knew that I would start grieving the moment I was told he would die. I lived every day inside a dichotomy… The hope of finding a cure vs. knowing the statistics and that we were facing his death. There is nothing more confusing, nothing more exhausting, nothing more devastating, Decisions to be made every single day about his care, his quality of life, what’s important, what’s not, what will help, what won’t, when should I stop working, when should I stop trying so hard and just enjoy the days we have left. And that was just for Jacob… In the mix of all that you also have other children to consider and make choices for, not only in their every day lives but in how all of this affects them.

I wish I had known what to expect from this beast of a disease: how things would change so quickly after months of “stability”, how much time we had left when we decided to go to Germany, and what the end would look like, because that is what I was seeing after a week in Germany – the beginning of the end. I wish I knew how much having this awful disease eating at his brain would take from him… before it took his life.

I wish I knew how this experience of fighting for my son life’s and then losing him would change me forever. Brain cancer alone is not something you go through and come out of on the other side unchanged… Brain cancer resulting in the loss of your child means a part of you dies with them.

To this day, I wish I knew what was going on in that beautiful little mind of his. What did he know, what did he understand… especially in those last days and hours. I wish I knew… I wish he could tell me.

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” ― Rose Kennedy

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

 

 

 

 

People You Need To Meet: #11 Julia Russell Lawler

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What I wish I had known before my husband was diagnosed with brain cancer. 

Jefferson Forest

My husband, John, was diagnosed with a grade 4 Glioblastoma Multiforme brain tumor in May of 2011.  He was 57 years old and otherwise in perfect health.  The only symptom he had was a grand mal seizure, which led to a trip to the ER, an MRI, a biopsy, and the devastating news that his chances of surviving more than 5 years were about 5%.

The day of John’s seizure was the 25th anniversary of the very day we met.  John’s cousin, Patty, has been a good friend of mine since high school, and she introduced us, telling me “You need to meet my cousin, John.  He has a nice car.”  Little did I know her idea of a nice car was a Chevy with manual windows and no air conditioning.  Knowing her as I do, I surmised the reason she thought the car was nice was because it was practical, affordable and paid for!  She knew I needed stability in my life, and John was nothing if not stable and responsible.

On May 25, 2011, the day of John’s seizure, it was unusually warm and windy. The weather man was predicting severe storms.  John and I went out on our deck after dinner and found a huge branch from a tree had been blown into our yard and was stuck perpendicular in the ground.  John said “That’s an omen.”  Little did we know. Within the next hour, we were in an ambulance on our way to the hospital.

John’s battle with GBM was short and brutal.  He had the standard radiation and chemotherapy.  We also sought out clinical trials at Duke University’s Preston Robert Tisch Brain Cancer Center, which is one of the top brain cancer treatment centers in the country, and where Ted Kennedy sought treatment for the same type of tumor.  Unfortunately, John didn’t qualify for a clinical trial, so we were sent home to try Avastin. Avastin has worked well for some brain cancer patients in improving quality of life and in some cases extending life, but for John it only raised his blood pressure to dangerous levels.  After two treatments that resulted in no reduction of the size of the tumor, the medical oncologist asked John if he’d like to “take a break” from all treatment.  He knew exactly what she was asking and told her “Yes, I’m at the end of the road.”  It broke my heart to hear him say that, but I knew it was his decision.  I feel blessed that he was able to make the decision himself.  Many brain cancer patients lose the cognitive ability to make decisions about their treatment, but because of the location of John’s tumor (in the occipital lobe), he retained most of his awareness and personality until very near the end.  I’m glad I never had to make the difficult decision to tell the doctors to stop treatment, as many family members do.

John survived for 10 months after he was diagnosed, and passed away peacefully in our home on March 31, 2012.  Ironically, the only person who was with us when he left this earthly plane was his cousin and my dear friend, Patty.  The very person who introduced us.  She was with us for our first hello and for our last goodbye.

Like many others who have endured the tragedy of GBM, I wish I had known how strong I really am.  When you’re faced with such a horrific disease in someone you love, you know that you will do whatever it takes to help them, comfort them, and ultimately to make their transition to the next world as easy and peaceful as possible.  If I had known the strength I would have I may not have been so afraid.

I wish I had known the depth of my husband’s love for me.  I always knew he loved me – I never doubted it.  But when he was close to death he said things and did things that told me that, even though his brain was being eroded daily by this terrible tumor, our love was what he knew for sure.  Once, about three days before he passed, he asked me for a pen and paper.  He said, “Maybe it would help if I write this down.”  I didn’t know what he wanted to write or what it would help, but he wrote “Julie” – the name he called me, and that was all.

There is no more devastating cancer than cancer of the brain.  Because of the very nature of brain tissue, cancer cells quickly spread throughout it, and treatment in most cases is only able to slow the progression of the disease.  Treatment can also severely impact quality of life, forcing patients and families to make horribly difficult decisions about what treatment to take and how long to continue it.  Recent research into the genetic makeup of individual tumors is showing some progress, mostly by helping doctors determine what treatment will most effectively slow down the beast, and therefore spare patients unnecessary pain and suffering.  But there still is no known cause and very few survivors.  More needs to be done to understand what causes brain cancer and how to treat it.  I hope that someday there will be just as much awareness of the need for research into brain cancer treatment as there is for breast cancer, prostate cancer and the other more common forms of this terrible disease.  Brain cancer is not as common as breast cancer or prostate cancer, but it is the most deadly of cancers.

The most important lesson I learned from the whole experience of caring for my husband during this journey is that love is really all that matters.  When everything else is stripped away, love is what remains.  It sounds trite, and people say it all the time, but I never really knew it in my soul until I felt the depth of the love I had for him, which made caring for him a privilege instead of an obligation.  Until I saw that even though his brain was damaged so badly that he no longer knew if it was day or night, or how to use a fork, or where he was in the house, he knew me.  He loved me, and he knew I loved him.  For that I thank God.  Knowing the true power of love has given me a new and deeper appreciation of all of the people in my life whom I love and love me.  It’s helped me to understand what is really important.

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.