Glioblastoma multiforme, the most aggressive brain tumor, is not very well known to the public. Only about 22,000 people are diagnosed with it each year. It is a devastating diagnosis, with a median survival of only about fourteen months. Five year survival stories are extremely rare. Today Debbie Moore, the founder of our parent website, GBM4cure, speaks with a remarkable woman who has defied the odds with this beast of a cancer for almost twelve years, and defied conventional medicine to do it. Cheryl Broyles talks about her battle with one of the most deadly cancers known, and her husband talks with us after about his journey with Cheryl and their two children over the past twelve years.
How did you first find out you had cancer?
I started having bad headaches. I was 33 years old. When I bent over to tie my shoe, it felt like my head would explode. I went to the emergency room and they told me I just had a normal headache and sent me home with advice to take Tylenol. Two weeks later the headache got worse and was never ending. All I could do was hold my head and rock back and forth. My husband took me to the emergency room again and they did a CAT scan. It showed my brain was bleeding from what is called an AVM (arterio-venous malformation). I went into brain surgery. During surgery they found, hidden within the AVM, a grade 4 glioblastoma multiforme. They told me I had less than a year to live.
Where was your tumor located?
The GBM was located in my left temporal lobe.
What treatments have you had for your cancer? What was your initial treatment experience like?
When diagnosed in June 2000 I had brain surgery (100% resection) and radiation (at OHSU in Portland OR). I chose to not take chemo at that time because they said it would only add 3 months to my life. Temodar was not FDA approved at that time and the chemo available (BCNU) was harsh and destructive on your body. I decided to take a more “natural” way. I did everything I could to boost my own immune system: eat organic, eat good healthy foods, exercise, simplify life, sleep well, take many supplements, and lean on God for strength. My two boys were only 1 and 3 years old, so I was VERY motivated to survive and thrive. I felt positive and filled with hope!
Were you part of any clinical trials, or were you told about any at all?
I was told only about the clinical trials available at UCSF where my neuro-oncologist is located. Doctors only “know about” and focus on the clinical trials at their hospital. If you want to learn about all of the clinical trials available, you need to be your own advocate. A great place to find information on clinical trials for brain tumors is at www.virtualtrials.com. I was involved with a radiation clinical trial at UCSF called HBoc where they injected me with cow hemoglobin then gave me 100% oxygen during the radiation. I had an allergic reaction and was removed from the clinical trial.
How many recurrences did you have and when did you have them? How were your recurrences treated?
As of Oct. 2011 I’ve had 3 recurrences.
* July 2004 the GBM came back on the perimeter of the tumor cavity. I had “awake” surgery with Dr. Berger at UCSF, 100% seen tumor resection; then went on Temodar for 1.5 years.
* Feb 2007 the GBM came back again on the perimeter of the tumor cavity. Again “awake” surgery with Dr. Berger, 100% seen tumor resection; then went back on Temodar for two years.
* Feb 2009 the GBM came back in my meninges (the tissue that covers your brain). Surgery again with Dr. Berger, 100% seen resection. I chose to not go back on Temodar since the tumor grew while I was on it. My post surgery MRI looked beautifully clear, so I chose again to focus on boosting my own immune system knowing my good healthy cells outnumbered my few cancer cells.
What part about all this was the toughest? What were the biggest challenges you faced in the early days post diagnosis? Did you ever feel like you “hit bottom emotionally”? What got you through it? How do you get the support you need?
The toughest and most challenging part when I was first diagnosed were two things: I was a mommy of two little boys, 1 and 3 years old. They needed mommy. My fear of leaving my husband Matt as a single dad was the other. Also, it was a challenge going through brain surgery and then radiation while taking care of two boys while my husband was at work! The second hardest thing was giving up my “job”. I am a wildlife biologist, was working full time and loved my job. I made ½ of our family income. It was hard admitting that I could not effectively complete that work anymore, with the deficits after my diagnosis. It was hard figuring out how to live on ½ of the money we were used to. It was hard giving up what I felt was my “identity” as a wildlife biologist, to a brain cancer patient. What got me through it was my personal relationship with my Lord Jesus Christ. Delving into God’s Word, the Bible filled me with peace and hope. Philippians 4:13 “I can do all things through Christ who strengthens me.” SO TRUE.
Did you have health insurance? Was it adequate to cover your treatments? If not, have you had financial hardship and how have you handled that?
I had/have health insurance through Blue Cross / Blue Shield. They have been great at covering all treatments. Then, after a year I was blessed to be covered by Medicare. Between the two of them (primary and secondary health insurance), we are very well covered.
Did you make lifestyle changes after diagnosis (food, exercise, other?) Do you do any "alternative" treatments along with western meds?
I completely changed my lifestyle after being diagnosed with the GBM. Albert Einstein’s definition of “insanity” cried out in my mind: “Doing the same thing over and over again and expecting different results.” I figured, if my past lifestyle led to cancer, I did not want to be insane and live it over again, expecting a different result!!! So I started eating organic, eating healthy food with no preservatives or additives! I started exercising 5 days a week. I did all I could to simplify life and have more time to relax and laugh. I made sure I slept 8 hours each night. I started taking many supplements to boost my own immune system. I started each day in prayer to my Lord, then delved into the Bible. My life changed in many, many good ways. I felt healthier and was at peace.
Do you live with deficits from having brain tumors and treatments? Have you learned how to compensate and overcome the deficits you live with?
My GBM was located in my left temporal lobe which controls language/speech and memory. So my greatest deficit is loss of words (nouns) and a harder time understanding what people are saying. That is a topic that can take a book in itself. Yes, I have learned more on how to compensate, but mostly I needed to accept my new “self” and not expect to get “normal” again. After each of my 4 brain surgeries, I worked hard to get my language fluent again. I was told reading out loud to yourself is a big step in getting your brain running again with language. My memory is very bad too. I’ve come to love yellow stickies and small note pads, which I use constantly!
What gave you hope that you can beat the statistics? Was there a moment or point in time (and what were you doing) when you realized you might defy those statistics? Did you start out pretty much hopeless and then realize things weren’t turning out that way after all, or did you always know you were going to beat your cancer?
What gave me hope for beating the statistics was the statistics class I took in college! I know how numbers work in math and predictions. The doctors tell you the “averages” in terms of life expectancy. But there are tails at the end of the statistics “bell curves”. I knew there must mathematically be long term survivors out there, and I was determined to be one! From day one, I never knew how many days I had to live. But I was determined to not think about the future. I wanted to give my all into living healthy and enjoying each second. I was not going to let the cancer win; I was going to love life! I love the saying; “You are what you think you are”. So daily I told myself I was happy and healthy!
What was the most important advice you were given throughout this journey?
The most important advice I was given that held me together and gave me strength through this brain tumor battle is from my Lord Himself. Philippians 4:6-7 “Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”
Any good tips you can give newly diagnosed patients that will help them through the standard treatments—surgery, radiation, and chemo?
I’ve learned so many things over the last 11 years, many from trial & error, and some from advice from survivors. There are too many to list. Here are a few. Get off Decadron as soon as you can! Ionic Magnesium Citrate works well for constipation! Have patients to recover after surgery, takes months. Exercise and keeping active helps hold back depression and fatigue. While on chemo, sit a gallon of water on your kitchen counter and drink lots during the day to stay hydrated, you will feel MUCH better on chemo. Keep your brain active too (if you don’t use it you lose it!), so work on puzzles, read books out loud, paint/color, anything that keeps your brain working! Get enough sleep, but not too much. The more you lie around, the worse you feel! Connect with other brain tumor survivors to encourage each other.
Do you have any favorite charity that you recommend donations be sent to?
The Musella Foundation is GREAT. They put so much effort into funding research for brain tumors and have wonderful internet support groups. www.virtualtrials.com
Were you or are you still involved with any support groups? Were you able to find any local support groups specifically for brain cancer?
I was not able to find any local support groups for brain cancer unfortunately. Over the internet I have found many wonderful support groups. Some over emails, like “BRAINTMR”, “Brain Research”, “Braintumor Treatments”. Also on Facebook there are some great support groups like Glioblastoma Support group, and other groups called Brain Cancer Survivors, Brain Tumor Family, etc.
Next Debbie spoke with Cheryl's husband, Matt.
How did you first hear that Cheryl had cancer?
Immediately after surgery to remove what we thought was just a leaky AVM (arterio-venous malformation) the surgeon told me that he had removed “a mass” from the surgical site in Cheryl’s brain. Later she found out over the phone it was a glioblastoma multiforme. I was returning to my office from fighting a wildfire and she called me and I could hear fear, anger, and panic in her voice when she told me “Come home. I have just been diagnosed with a GBM!!” She had been studying up on tumor types on the internet and she knew the typical prognosis for GBM patients. She was freaked out. I was able to hold it together for the drive home but I freaked out too when I got home.
What part about all this was the toughest? What were the biggest challenges you faced in the early days post diagnosis? Did you ever feel like you “hit bottom emotionally”? What got you through it? How do you get the support you need?
Some of the biggest challenges early on were the games my own head played with me. Like what I call the “Is this the last time?” game. Is this the last time we will celebrate Christmas as a family? Is this the last time Cheryl will go camping? Is this the last time we will make love? etc. That game is really insidious because it puts a damper even on the most fun/enjoyable activities/events. It throws a wet blanket over the whole experience. Another challenge was the way Cheryl reacted to the medications (steroids) she was on after each of her surgeries. The steroids make her very angry, mean, unforgiving, and just about impossible to live with. In many ways it was as if the person I loved and married was gone. I think I bottomed out twice. Once after surgery #2 and another time after #3. When things got bad and I needed to vent I would sit up late at night at the computer writing a journal to nobody in particular, just expressing how I thought things were going at the time with our relationship, my fears and doubts and complaints about the situation. When I look back at it now it is really scary how far beaten down I was emotionally back then. I would have a thought or feeling, and then verbally beat on myself for having it. Nobody has ever seen the stuff I wrote except me. There is stuff in there that is toxic and would not have been fit to share with anybody—especially Cheryl. I got through this hard time because of my faith in God. I have a personal relationship with Jesus Christ and he helped (and still helps) me through the darkest of days. I don’t know how non-believers get through this. Because Cheryl is doing so well, I don’t feel like I have seen the hardest part of the challenge that this disease brings to patients and caregivers. I hope and pray I never do. But if things go badly, I know that Jesus will be with me through every minute of it.
Were you affected by any financial hardships due to Cheryl's medical expenses, loss of income from taking days off to be with her, etc and how have you handled that?
The biggest financial hit came when Cheryl took early retirement from her job. She was making a little more than I was at the time and we ended up selling a house on acreage that was really a special place to both of us. We just could not make the payments without her working. And, with her future so uncertain we felt the need to simplify life by moving from the country place to a small house in town. Social Security disability benefits help with the financial issues. We have really good primary health insurance (Blue Cross) through my work, and Cheryl is qualified for Medicare coverage which helps too, but we still have medical expenses that are not covered by insurance—like dietary supplements. Family members have helped out some financially with generous gifts when Cheryl has had to have surgery. They helped cover living expenses when we were down in San Francisco for extended periods for her surgeries.
Did you make lifestyle changes after diagnosis (food, exercise, career, other?)
Cheryl stopped working. I kept working. We started eating more organic foods as a family and Cheryl started in on an elaborate mix of dietary supplements and started to exercise vigorously. We came to really appreciate the value of time and family time in particular. We are always doing things together as a family. Travel, camping, boating, hunting, fishing, hiking, etc. We are by far the busiest family we know. We don’t waste time just sitting around the house.
Have you made any compensation for what she can no longer do? How have your learned to compensate and overcome her deficits?
Not really. We are very blessed in that Cheryl is so functional. She drives, uses the computer, pays bills, cooks, cleans, back packs, rides a bike, sets her own appointments with the doctors, etc. She has essentially no deficits that the average person would detect when interacting with her. I really don’t consider myself a “caregiver”. She can take care of herself. I do step in and help with tasks that are language intensive… reading mail from the insurance companies, talking to sales people on the phone for her, filling in words for her when she is at a loss for “nouns”, etc. Her deficits are language-related, so that is where I can really help. Even though she is so high functioning, and can do all those things, she gets mentally fatigued very quickly if she has to speak or listen for an extended length of time. Cheryl recently underwent an extensive examination by a neuropsychologist who specializes in brain injury and loss of function. The results of that testing confirmed some things we already knew about her deficits, and showed me some functional areas where things were a little worse than I thought they were. It is a great way to gain insight into tasks/functions that a patient can use some help with. I wish we had done it 5 years ago.
What gave you hope that she could beat the statistics? Was there a moment or point in time (and what were you doing) when you realized she might defy those statistics? Did you start out pretty much hopeless and then realize things weren’t turning out that way after all, or did you always know she was going to beat this cancer?
STATISTICS APPLY TO POPULATIONS, NOT INDIVIDUALS. KEEP HOPE ALIVE! EVERY PATIENT IS AN INDIVIDUAL AND THEIR TUMOR IS UNIQUE. Everyone who knew Cheryl at the time of her diagnosis knew that “That tumor picked the wrong head to show up in!” Cheryl is about the most stubborn person I have ever met and she is known as quite a fighter. I knew that if anybody could beat the odds it was her. The problem early on was that we didn’t know that it was really possible to beat the odds and live as long as she has. Getting connected with long term survivors made a huge difference. With our science backgrounds we understand the concepts of bell curves and statistics. We knew logically that there had to be people way out there on the long term tail of the survival bell curve, but how far out the tail extended (or didn’t extend) was a little scary. Emotionally it was really important to verify that the curve extended out past 10 years and there were actually folks out that far, by actually finding and interacting with those folks. For me, things were pretty rough at the start, but as she did well things got easier. The recurrences were setbacks, of course. But after surgery #4 when the tumor was just a little chunk of glial matter on the inside of the dura, and not in the brain itself, I began to allow myself to occasionally think that she might actually beat this thing.
What was the most important advice you were given throughout this journey?
The most important advice was: Trust in God. To keep hope alive, seek out the best doctors and treatment centers. And to not make life altering decisions until circumstances forced us to. “Don’t trouble Trouble until Trouble troubles you.”
Any good tips you can give caregivers of the newly diagnosed that will help them through the standard treatments—surgery, radiation, and chemo?
See #7 above. Also, be patient with your loved one. They will be going through terrible things physically and emotionally. They may seem like a whole different person when under the influence of the drugs and treatments. If you know it is coming, you may be able to handle it better. You will be going through this together, on parallel tracks, but your journey as a caregiver is a different journey than that of the patient. You will have some of the same fears and concerns as the patient, but you will also probably have some that are different based on the thought of how you will cope/live/get by if the patient passes on. Think of you and your loved one as walking down a 2 track country road, holding hands, one walking in each tire rut. You are taking the journey together, but the potholes and mud holes are not always the same in each rut. As you travel along, sometimes there is a rock or mud hole in one rut but not the other. Thus your experiences of the journey are not identical. You will probably think and feel things that you want to express/vent, but some of that stuff will probably not be helpful for the patient to hear. Only share the supportive things. Try not to burden the patient with too much of your own junk…find another outlet for the really toxic stuff. It is important for your relationship to be honest and open for the most part, but I found that there were things that I was feeling/thinking that were just not going to be good or helpful, or loving, or useful to share with Cheryl.
Were your or are you still involved with any caregiver support groups? Were you able to find brain cancer specific groups near you?
No, not involved in any internet support groups. There are no brain tumor support groups in our local town. Probably would not go anyway. Talking about all this is like picking a scab off a wound. It “lets the monster out of the cage” and I don’t find it helpful. But that’s just me. Others might find it very helpful.
Do you have any favorite charity that you recommend donations be sent to?
The Musella Foundation.
About the contributors:
Cheryl Broyles maintains an active web presence, corresponding with other victims of GBM to share advice and hope. As of summer 2013 she has suffered her fifth recurrence of GBM, undergone a fifth brain surgery, and continues to do very well. She has written a book about her experiences, which you can purchase at her website, here.
Debbie Moore is a wife, mother and grandmother who recently lost her father to Glioblastoma Multiforme (GBM). It was during the 6 month battle with this disease that Debbie and her family realized how little information and resources are available for this particular type of brain cancer. From this discovery, she has made it her mission to bring awareness and resources to those who are newly diagnosed, by starting an organization that will develop support groups, informational websites, fundraising events and awareness products. That organization is our sponsoring website, GBM4cure.
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About the contributors:
Cheryl Broyles maintains an active web presence, corresponding with other victims of GBM to share advice and hope. As of summer 2013 she has suffered her fifth recurrence of GBM, undergone a fifth brain surgery, and continues to do very well. She has written a book about her experiences, which you can purchase at her website, here.
Debbie Moore is a wife, mother and grandmother who recently lost her father to Glioblastoma Multiforme (GBM). It was during the 6 month battle with this disease that Debbie and her family realized how little information and resources are available for this particular type of brain cancer. From this discovery, she has made it her mission to bring awareness and resources to those who are newly diagnosed, by starting an organization that will develop support groups, informational websites, fundraising events and awareness products. That organization is our sponsoring website, GBM4cure.
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At our sponsor site: GBM4cure
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