People You Need To Meet: #17 Amy Phillips Hanley

52 People To Meet Posts

What I wish I knew before my husband Bobby was diagnosed with cancer: real strength can be found in vulnerability. My relationships were about to change. All of them. Some got stronger…and they weren’t always with the people I expected.

There are emotional highs and lows with a terminal illness, and a lot of personal battling between unrealistic hope and realistic easing of the pain and sadness for the patient. I’ll never forget the look of utter devastation on Bobby’s face as we were told the diagnosis and prognosis. My 45-year-old husband was incredibly smart, had the daring and confidence of a jewel thief, and an unrivaled comedic wit. As he weakened and declined, his face and stomach became bloated by steroids, his personality and speech were childlike, and he slept all of the time.

The people I thought would handle this well were not able to for many reasons. Some of the reasons were selfish. Some of them were entirely innocent and circumstantial. All of them are forgivable because who plans cancer? I spent a lot of the time putting on a positive front (especially with our 14-year-old son Jack), when I was aching and falling to pieces inside. I felt it was important to stay strong and let Jack remain a child. I had to find people who could comfort me and talk it all through.

My mother was diagnosed with lung cancer a month before Bobby’s diagnosis, so she was unable to provide the support I needed. Unexpectedly, my sister became my rock. She listened, lent a hand, went with me to appointments, added a touch of humor, and respected me when I wanted to be alone. I lived in Tucson, and she lived in Richmond. I am truly grateful for family ties despite the miles.

Unfortunately Bobby’s mother’s grief came tumbling out in very negative ways. Not once, not one single time did I hear Bob complain or cry “why me” or curse the fates, or express any of the anger or bitterness that I think I would feel. He gave me, Jack, and his lifelong friends the ultimate example of manly courage, of uncomplaining stoicism, of quiet and unassuming heroism. His mother devoted her time to her own unhappiness and fears. She wouldn’t help me take care of him and left two days before he died. I’m a mother…who leaves their dying child?

Possibly one of the saddest moments I shared with Bob was when he asked me (a week before he died) why his best friend since sixth grade had not come to visit him. I didn’t have a response so I just told him I thought he was afraid of bringing drama into his own life. A couple of my close friends abandoned me when Bob was diagnosed, and they are not a part of my life now. If I see them I am polite, but they are not my friends.

After Bob died I slowly withdrew from friends and family, and the weight on my heart was like a boulder. I realize now that if you spend a lot of time alone while you’re grieving, it can make the feelings of loss worse. As bad as the pain may be, do your best to do something productive and worthwhile, and have a normal routine while you grieve. Be kind and patient with yourself. I am happy again. The weight of the boulder is more like a pebble. I carry that pebble in my pocket to remind me to let go of the trivialities of life. It is said that people who have faith can turn to it in order to help them through a loss. I believe in life after death…and I know Bobby is always with me. I feel him every single day.

People You Need To Meet: #16 Kaitlyn Renae

52 People To Meet Posts

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

Survivor with a Smile

Survivor with a Smile

My senior year of college had just started, and I started getting headaches just about a month in. At first they were seemingly small, like just regular type headaches. Soon I was missing more classes than I could afford, and I was having them every day.  They were intense. I tried everything in the books to get rid of them, nothing worked. People kept telling me that I was overly stressed and probably drinking too much caffeine, though I’m not a huge caffeine drinker. I just assumed I had fallen victim of those “dreaded migraines.” I never bothered to go to the doctor.

I graduated, somehow, on time, but they continued to get worse. Over the summer while I was counseling at camp, I noticed my memory was terrible. I was leaving and forgetting things all over the place, which is so out of my character. Especially being a counselor. I was jumbling power points and going completely blank with many things.

I didn’t really start to think something was wrong until a couple months later. The headaches were through the night and day. I couldn’t escape them, and I was losing my ability to function day to day. A year after I started having headaches, I finally went to the doctor to get migraines meds. She listened and said, “I think you need to have an MRI.”

Five hours later she had called my house phone, but I had missed the call due to my grandparent’s 50th wedding anniversary that weekend. I didn’t get the message that I needed to call her until Sunday night. Little did I know, this was the start of a journey I didn’t think I was ready for. She said I had an abnormal amount of tissue on the brain, along with some lesions on the different lobes, but she couldn’t be the one to diagnose it. I wish I would’ve realized how much the Lord was going to protect me in this journey, that first phone call being one of them. My family was able to gather and enjoy each other without having to worry about what the answer on the other end of the phone would be, until after the weekend festivities were over.

I wish I would’ve known about the journey ahead. We made it to a neurologist, and he hardly looked at the scans and sent me on my way with medicine I said made my headaches worse. On to a new neurologist we went. It wasn’t until a month after my original results that I was officially diagnosed. On October 22, 2013 I was diagnosed with a brainstem glioma, and possibly MS on top of that. This diagnosis rocked my world. I wish the doctor would’ve been clearer in my specific type on the phone, and I wish I would’ve stayed away from the internet in the waiting period to see the doctor. My life was changed, more positive ways than negative, but nonetheless, a mountain had formed in front of me I knew I had to climb.

I didn’t know how this journey was going to change me or the patience and endurance it would require. The seemingly endless poking and prodding of needles, the hospital gowns, the early mornings and late nights. It all seemed unbearable, but I would receive letters stating how inspiring my story was and how I changed their outlook on life, all because of my faith through all of it.

I wish I would’ve known how loved I am. That I matter. I have a wonderful family, friends, and a fantastic church family, but yet I didn’t really understand that I was loved and cherished by so many. I don’t think I even really fully understood HOW MUCH GOD LOVES ME. I matter in this world. As word got out that I had been diagnosed with brain cancer, letters came pouring in. Flowers were being sent, I was getting little goodies in the mail, care packages – and messages on Facebook from people I didn’t even know saying how I inspired them and how I helped them in their walk of faith. I was overwhelmed with love and God had shown me how incredibly blessed I really am.

My value doesn’t come from man, but from God, and I wish I would’ve grasped and understood this without having to have cancer. If I’m honest, growing up I had some very dark moments where I questioned if my life was even worth living. Cancer changed that outlook forever, every day is a gift and a blessing, not a burden.

I wish I would’ve known how God was going to use me through this. I do not believe that God gives people cancer, or other terrible diseases. I truly believe this is a cause from the fall of man that goes back to the Garden of Adam & Eve, the world became broken. What I do believe is that God can take something so horrible and use it for His good.  From the first phone call there were lots of tears, long nights of anxiety and wondering and questioning if I was going to make it. Am I going to live long enough to get married? Let alone get a boyfriend? Am I going to live long enough to go to grad school? Long nights of wondering what I wanted to leave behind to those I love most.

I decided from the beginning that I was giving this to God. That no matter what happens to me, I want God to get the glory, and I want Him to use this in whatever way He wants, even if that means losing my life. I became a better friend, a better daughter, a more forgiving and loving person, and I wish it would’ve happened without cancer.

God has used my cancer to reach and inspire others. I have had relationships repaired and friendships restored. I never thought in a million years my relationships would be where they are today, and I didn’t know God was going to use my diagnosis and softened heart to repair them. I’ve had friends come to me wanting advice on how to talk to friends with a recent diagnosis, I’ve been able to encourage and show compassion to those who have just started the same journey.   I’ve been blessed to be able to shine His light through such a dark and scary illness. God softened and changed my heart and I’ve never had a stronger faith than I do now.

I wish I would’ve known that God does give you more than you can handle. For all of my spiritual life, I believed God didn’t give you more than you can handle. I was even guilty of telling people such things, though I’m not sure I ever believed it, but I thought it was true. After being diagnosed, I realized I was in way over my head. I have to do things that are only in nightmares, and I quickly realized this is too much. I am overwhelmed and I can’t handle this – on my own. The hospital visits, the long days of being in pain, the spinal tap, unable to work at an age where I feel as though I need to be working, all of which is too much. It didn’t come easy, but I learned that in this world we sometimes get more than we can handle, but God will be there to equip us and guide us to get through it. The passage where it says that His yoke is easy and His burden is light is there because God KNOWS that our burdens can be too much to carry, but gently reminds us, He is big enough to handle anything. God has allowed me to carry more than I can handle, but He is always there before me paving the way and holding my hand.

I wish I would’ve known how to live life to the fullest before the diagnosis. I never realized how much I was missing in life until I heard the word cancer. It’s a scary, mean word, and it really makes you step back and look at priorities. I no longer live in the future as much, or go back to the past, but I stay in the moment. Every second counts, every precious breath, every smile, every beautiful sunset, is a blessing. Less worry and more doing. I wish I would’ve been living like this before I was diagnosed, but I wasn’t, and at times I still don’t, but I am learning each day to take it as a gift, a beautiful gift.

I wish I would’ve known how painful this journey really is. I remember vividly my Grandmother’s vicious battle with breast cancer, and mine has not been remotely close to such battle, but it certainly has been far from easy or pain free. I have had horrible headaches for over a year, almost two now. I thought when we figured out what was wrong we could get rid of the headaches, but that was far from the truth.

All of sudden I realized, I really am sick. We tried so many medicines, I can’t even count. Some that made me cry for no reason, some that made my skin crawl, and some that made my head hurt so much worse all I wanted to do was bang it against the wall. My memory was bad enough without medication, but another made my memory absolutely terrible. I have always been someone who can remember all the kids in the classroom’s name after the first day or two, now that is out of my ability. Medicine that made me lose so much weight I literally felt weak. I remember looking in the mirror and telling myself that I hated looking so sick. My appetite was gone, food tasted different. I would try to drive to a place I’ve driven countless times before, and I would get lost. I had to hand my keys over to my friends at times so they could drive for me. Medicine that made me angry and moody. I felt trapped and I knew this wasn’t Kaitlyn, but yet I couldn’t change it. The countless blood work with the many times I almost passed out, the blown veins, the kinked lines, the burning and electrocuting pain of the spinal tap. And nobody ever tells you how exhausting it all is. The bubble in the back of our heads that I could also have MS on top of cancer.

It’s not easy. It’s difficult and trying, but I have hope. I have confidence that God won’t stop working in me and through this. I wish I would’ve known how much strength I had. “You never know how strong you are until being strong is the only choice you have.” Things have been looking up, more answers have been pouring in, and I am finally going to be able to go back to work. I wish I would’ve known how drastically my life was going to change. God is good, and He will continue to orchestrate whatever is best, no matter what the final outcome.

52 People You Need To Meet: #15 Lavanya Scott

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

Nothing. Nada. Zip. Not a damn thing. Like the country song goes, “I wish I didn‘t know now what I didn’t know then”. There is not one thing I have learned along the way that I wish I knew before my son was diagnosed with Glioblastoma Multiforme (GBM), an incurable brain and spinal cord cancer.

I can’t say I wish I knew how lucky I was or that I appreciated my son more. I knew. I was a good Mom. I don’t care if it sounds immodest, I was a really good Mommy. My son had so much love. He was my focus; he was my joy. I knew how lucky I was.   I still got a little thrill every morning when he woke up, just because I got to see him and hold him again. I cried tears of happiness playing on a blanket in a park when he was eight months old. I tried to imprint every detail of that day in my memory, knowing it was my version of Heaven. I cried again at the library playgroup we joined when he was two, and I was laid off from work. I was so happy that I got to stay home and just be his Mom for a while. I knew how lucky I was that I had a child to do these things with. I can’t say I wish I didn’t take him for granted. I didn’t. I knew how lucky I was, how blessed to have this beautiful child in my life. I can’t say I wish I had my priorities right. I had them right.

I wish I didn’t know now that a child is diagnosed with cancer every three minutes worldwide, that seven children in the US die of cancer each day, that brain cancer is the leading cause of childhood and adolescent death by disease, that the incidence of invasive childhood cancers has increased by 29% over the last 20 years. I wish I didn’t know that childhood cancer research receives only 4% of federal funding for cancer research, that less than 5% of funds raised by several major cancer charities is directed to pediatric cancer research and that only two new pediatric cancer drugs that were initially studied in children have been approved by the FDA in the last 20 years.

I wish I didn’t know now that some childhood brain cancers are considered incurable. Although overall 5 year survival rates for pediatric cancer have increased to almost 80%, rates for pediatric brain tumors such as Diffuse Intrinsic Pontine Glioma (DIPG), Gliamatosis Cerebri and GBM are still close to 0%.

I wish I didn’t know now that when parents are given the diagnosis of these cancers, they are not offered hope for a cure. All that can be offered are the options of no treatment or palliative radiation and chemotherapy. Tough treatments that may or may not help with the symptoms and extend their child’s life a little longer. I wish I didn’t know how hard it is to live in a hospital for weeks and months on end. I wish I didn’t know how to take care of a critically ill child at home, to give tube feeds and IV meds, to deaccess a port, to use a suction machine and a pulse oximeter. I wish I didn’t know that childhood cancer isn’t all smiling kids with bald heads running around chasing rainbows and butterflies like they show in fundraisers. I wish I didn’t know that some kids are just too sick to leave the hospital or too sick to leave home most days, let alone take a Make-A-Wish trip.

I wish I didn’t know how to get a four year old ready for Heaven. I wish I didn’t know that you help him pick out his favorite clothes, a stuffed animal and a blanket and pack them up in his backpack. I wish I didn’t know the words to tell him that he won’t have stupid tumors in Heaven, and he’ll be able to talk and eat and walk and run again. That he will have a dog to play with and great-grandparents who will take good care of him. And a brother or sister who didn’t get the chance to be born. That Thomas the Tank Engine and Percy will come to his house to take him to Heaven. That it will be like going to daycare, Mommy and Daddy will hug him and kiss him goodbye, and he will play for a while but then we will go to Heaven to scoop him up and we will all be together again.

I wish I didn’t know now that parents of a child with cancer suffer from Post Traumatic Stress symptoms at alarmingly high rates. I wish I didn’t know that caregivers and even the doctors are haunted by their decisions, even when they were the right ones with the information they had at the time. I wish I didn’t know the beast that grief is. That the flashbacks, the despair, the pain would be so consuming, even at six months, a year, two years, and beyond, I am beginning to think forever. I wish I didn’t know that time doesn’t heal all wounds.  

I am glad I didn’t know any of this before. I wish I didn’t know it now. I wish no other parent had to know it either.

Editor’s note: Every week, it is hard for me to keep my commentary out of these posts, and this week, I just really needed to add something. Before my child got cancer, I think I always sort of thought that something “went wrong” with the kids who got cancer. You know, maybe their parents didn’t make them eat the right foods, or didn’t seek treatment fast enough, or didn’t take them to the right hospital. Horrible, horrible thoughts, but I always thought if it was MY kids we would fight harder. We would find a way to win. But we didn’t. And like Lavanya so eloquently illustrated, no amount of love can save your child from cancer. I was arrogant before David’s diagnosis, thinking that cancer didn’t run in our family so we were safe. NO ONE IS SAFE. Please get involved in the fight against cancer now – before it is you or your loved one suffering. You will never regret trying to help save someone’s life. If you don’t know what to do, message me and I can help you find a way to get involved that will mean something to you.

#BrainTumorThursday

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It occurred to me today that when I was new to this world of brain cancer, it was quite an overwhelming place. With the internet, there are countless resources out there, but it is very hard to know where to really connect. So today, #BrainTumorThursday, I thought I would address a couple of ways to connect with others in the brain cancer community.

First, there are two hashtags that are quite popular on Twitter for brain cancer. The first is #BrainTumorThursday, and each Thursday, people will post about brain tumors. The second is #btsm, which stands for “brain tumor social media”. People who are passionate about the cause use these hashtags, and even “meet up” one Sunday a month on Twitter to talk about issues.

On Facebook, there are quite a few groups that deal with very specific tumor types and are geared toward survivors and/or caregivers. Search under specific tumor types (GBM or DIPG, for example) or just type in “brain cancer”. You will find others who are fighting similar battles, and the at large “brain cancer family” is a very supportive group.

On Pinterest, there is a growing movement of brain cancer awareness. It’s a good place to find some images to use during brain cancer awareness month (May). I’ve posted some images here: http://www.pinterest.com/haddock/brain-cancer-awareness-dragon-master-foundation-sp/

I know that there are people active on other social media sites as well, but I’m not as active on those. lf you have some good social sites/pages to share, please post them below.

Lastly, there is a movement very dear to me by my good friend, Alex Moore, to raise money for his film about a brain cancer survivor. I re-blogged Alex’s post about his film, but I wanted to mention it here because I think it will be such a valuable resource for families. A survivor himself, Alex will be able to tell the story in a way no other storyteller could do. I’ve had the privilege of reading Alex’s tribute to lost warriors (my son included) along with the stories of hope he has encountered along his path. I hope that you will check out his project and consider sharing it with others who would like to bring awareness to brain cancer. You can read about the project here: http://www.gofundme.com/aimoore

People You Need To Meet: #14 Stacie Guirguis

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Basil bfore_after

December 24th, 2006. Our son was only 4 months old. A normal annual physical, landed the love of my life in the ER. After a urine test and some blood drawn, he was asked to go for an MRI of the brain because for some reason his PH Levels had sky rocketed. With not an ounce of fear, he did this and before the MRI was complete, they sent him to the ER. He had no symptoms. NOT ONE.

Four hours later, after many faces of many doctors, nurses; after many “I am so sorry you are going through this”, “what a young couple”; a doctor…very tall in stature, calming, yet gracious face holds out his hands for mine, but not wanting any comfort, I put mine in my pocket.

“You have a brain tumor. Two, actually. One the size of a melon in the left frontal lobe of your brain, The other on your brain stem.”

Silence. My legs became weak. My head heavy. My heart stopped. What? “Ma’am, I am so sorry. Your husband has brain cancer.”

Basil lived graciously with brain cancer for 6 years. His first craniotomy was grade 2, his third proved to be the deadly GBM. Offered only 15 months to live, he never believed ONCE he was going to die. But he passed away only 14 months later, as I lay next to him, spooning the man I said I would grow old with. His last breath was an exhale…and as I waited for that inhale, I felt his presence leave. Forever 38. He left behind two beautiful sons. Evan was 6, and Shane just barely 2. Rest in Peace my love. 5.31.2012

 

“What I wish I knew before my husband was diagnosed with cancer.”

Faith. It comes and goes. I prayed and prayed. At times, as much as I prayed is as much as my faith was tested. Sometimes I would walk away from it. Sometimes I would submerge myself in it. Sometimes I would hide behind it. Faith can mean so much and so little at the same time, if you have no belief that there is a bigger and better out there. Every time I lost my “faith”, I was reminded that I had 2 little blessings I called my sons and I was grounded again.

Numb. I was numb for almost 6 years. Numb was all I could feel. It was like a blanket that held me together, one that I wish I could have seen before I lost my husband. Being numb, hardened my marriage yet broke the intimacy; it shrunk my faith and suffocated my fears. Numb also protected me and provided my life with a pre-conceived strength I thought I had during those 6 cancer filled years.

Friends. I needed them. Family. I need them more.   My family was taken care of while I nursed my husband in his now infancy stage –washing him, hold his head up for food, while I sang him his favorite songs, terribly…while I brushed his teeth and cleaned his messes. Family and friends came. They provided smiles for my children, they made sure food was on the table and that homework was done. My house was clean and my dog was let out. Family and friends, see your darkness, they feel your pain and without asking know your weakness. They just showed up. I love them and owe them more than a “thank you” will ever encompass.

 

Lessons to pass on:

Let go. Let go of the things that weigh you down. Trust life. Sometimes answers are not what we need.

Breathe. Really breathe, though. Take a deep breath and remember that blessings surround us daily.

Smile. My husband always said. No matter what smile. Even if you aren’t happy. Smile. Smile at a stranger, a passerby, it confuses people, and it feels good.

Stop comparing. In hindsight, I would always ask, “Why me?” My friends aren’t going through this. Why me? Why? Because shit happens. Work with the time we have. Every moment is a gift. Some people aren’t even given time.

Love endlessly.

Hug more.

Sing in the shower, even if your kids tell you that you sound like a man.

Dance. I mean really dance. Like you think you can dance.

Have a drink. A stiff one or a favorite one, yummy one at least once a week 😉

Have compassion.

Hold your husband’s hand. That simple gesture sparks something irreversible every time you do it. And it’s always an irreversible good spark.

Always say I LOVE YOU.

Never, ever go to bed angry.

I have been a widow for almost two years. I wish I said I love you to him more. I wish I held his hands more and remembered his scent. Nothing prepares you for cancer. Nothing. It’s a journey that takes its toll and manages to change you. My heart breaks daily for my boys who will probably forget how their dad held them, how their dad hugged them and told them how much he loved them. His legacy lives on through them…it’s a continual gift my husband has left me behind.

Finally. Be GRATEFUL and show grace. Gratitude carries you through, and grace is your guide.

Cancer. Brain Cancer. Death. “What I wish I knew before my husband was diagnosed with cancer.”—I wish I knew a cure. I will love you forever, Basil. Always and forever 38.

Editor’s note: Stacie was kind enough to share pics of Basil, and we decided to show him before brain cancer and a few weeks before he died. To me, his eyes tell a story none of us could put into words.