I’ve been having some wonderful conversations with folks about the foundation recently, and one of them was kind enough to blog about it. Check it out:
If you know me, you probably know I don’t run. I’ve just never found the motivation. However, since David died, I’ve toyed around with the idea of running. It would certainly help me get into some shape (other than round), and that seems to be more important the older I get. This past weekend, we volunteered at a run, and I was particularly motivated by the crowd and the fun “bling” the runners were awarded. I think it may be time to get serious about training for a run. In the meanwhile, I thought you might enjoy seeing some of what the weekend included so I’m linking this post to my first ever attempt at Storify: http://storify.com/amandahaddock
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.
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.
What I Wish I Knew Before My MOM Was Diagnosed With Brain Cancer
On September 25th, 2012 my mom had an MRI after experiencing headaches and a handful of other odd symptoms over the previous months. After a biopsy and what seemed like the longest two weeks of our lives, we were given the diagnosis of Glioblastoma Multiforme (GBM). Two of the ugliest words I’ve ever heard.
I wish I knew what a thief this disease was. I’m talking beyond the death part. My mom enjoyed several things in her life, but three stick out very clearly for me. First and foremost, family. She retired at 59 to help with her grandkids. She had eight overall but five were born in a 13 month span starting around the time she retired. Each was her pride and joy. With the GBM diagnosis, she immediately lost the ability to care for her grandkids on her own. Second, physical activity. My mom played tennis competitively a few days a week and also worked out every morning. There was no physical activity she didn’t enjoy or excel at. She tried to be physically active for as long as she could but couldn’t play tennis competitively and that was devastating to her. Third, reading. She often fell asleep with the light on and a book on her chest. Though she retained the ability to read for a little while, she eventually lost it.
I wish I knew what it really meant to lose your independence. I often thought I never really had independence because I lived at home throughout college, had a baby while still living with my parents, and then moved into a home with my child, so I was never in a “place of my own.” My idea of independence has changed significantly. The loss of independence due to GBM can start with immediately losing the ability to drive yourself anywhere you want to go and can be followed by no longer being able to be left alone. Then there is the need to rely on others to make your medical decisions because you can’t comprehend your options. These can be the initial, painful losses. Down the line….needing others to get you in and out of bed, on and off the toilet, dressed, fed, bathed. My point is independence isn’t being on your own…..it goes way beyond that. You really have no idea what loss of independence is until you’ve witnessed this.
I wish I knew what the road to death by GBM would be like. We knew that death would come much sooner than it should. We were given the statistics. The average life span is only 15 months. Only 20 percent of people diagnosed with this disease live to the two year mark. But you’re never really prepared for what it LOOKS like or how quickly things can change. To see a once physically fit, strong woman become a physical and mental shell of herself is shocking. Bedridden, bloated abdomen from medications, skeletal legs from muscle loss, blank stares as you realize she either doesn’t recognize you, can’t recall your name, or can’t comprehend that you’re even there. The truly unfair part of brain cancer is that it not only destroys the organ in which it resides but inevitably all of you because it’s your BRAIN. Once calm people become agitated, once loving people become emotionless, once happy people become sad….all while your body begins to fall apart because its command center is being eaten away by a parasite called brain cancer. All the basic tasks…walking, talking, thinking, breathing, chewing, swallowing…. become difficult and ultimately impossible.
I wish I knew more about treatment options. My mom was one of the lucky ones that had the right genetic markers to respond positively to chemotherapy. Given that, should we have passed on concurrent radiation? The tumor was held at bay by the monthly chemo up until the time we decided to stop treatment. My mom’s downfall was ultimately the radiation. Radiation can continue to kill off “good brain” for months and years after the actual treatment is over. Because the tumor was inoperable, “standard of care” or six weeks of concurrent radiation and chemotherapy, was all we were given as a treatment option. When in this situation, you put all faith in the expert that is giving you your so-called options. Since then, I’ve read about a woman who has thrived for over a decade with GBM and she refused radiation and only did chemo. Granted, her tumor was operable, but it still makes me wonder…should we have done that? Would the chemo, on its own, have been enough to extend a quality life given the genetic markers? Could we have then avoided the radiation damage that ultimately destroyed all aspects of who my mom was? I will never know the answer to these questions but I can tell you they haunt me.
This experience has educated me in both good and bad ways. The good that I’ve learned from this is that I should follow my mom’s lead and always make family my number one priority. Though I am trying every day to reprioritize, and admit I haven’t been great at it so far, there’s nothing that should be put ahead of family.
My 62 year old mom is currently under Hospice care and approaching the finish line of her journey through this horrible disease. She is very eager (and oddly so are we), for her reunion with her mother, father, and two of her brothers who also went prematurely before her – Joe (23) and Mike (57).
February, March, and April. That is what stands between us and Brain Tumor Awareness Month. There is a lot of work to be done if we want to see real change this year. Last May, I posted some tips, but by then it is too late. If we want to see gray in May, we need to start asking now. Please take a few minutes to write to your favorite newspaper, tv station, magazine, etc and tell them about brain tumors and brain cancer. The more people who do this, the more they will understand it is a story their readers/viewers care about.
Now is also the time to plan your events for May. We are working on Concert to Cure (slight name change from last year) in Wichita, and we are lending what support we can to other events around the country. Race for Hope in Des Moines is in its second year, and they have big fundraising goals for this year. I’d love to hear about what is planned in your area. Please post a link, and I’ll try to get events posted on the Operation: ABC “Annihilate Brain Cancer” Facebook page.
In the meanwhile, if you are looking for some inspiration, or just need a cool new shirt, check out this great design to benefit both Dragon Master Foundation and National Brain Tumor Society: