page
1 Bios
page
2>>
|
page
1 Bios
page
2>> |
|
|
|
|
|||||||||||||||||||
| David Bailey - Bio |  |
||||||||||||||||||
| When david was diagnosed with a brain tumor and told he had one year to live, he began a new journey. A rediscovered faith and gentle urgency awoke his passion of songwriting. With his different perspective, he began to pen and perform new songs of courage in the hopes of helping others find their way to peace. After more than three years, david, his songs, and his passion are alive and well! David grew up as the son of Presbyterian missionaries in war-torn Beirut, Lebanon. He studied classical guitar at the age of 12 and began composing at 13. While attending boarding school in Germany, he made his first studio recording, Certain Sounds, and played throughout Central and Eastern Europe. During his college years in Pennsylvania, David made a home in a duo called Bailey & Deasy, but then put his guitar away and then walked into corporate America. After a decade of silence, David returned to the stage to front a a new acoustic duo, Not by Chance. After 2 studio recordings and 2 years of solid touring, the duo retired and david launched a new solo career in support of his three solo albums, Peace, Love the Time, and One More Day. Influenced by the work of James Taylor, Kahlil Gibran, and J.S. Bach, David leans on strong melodies and intricate fingerpicking while his gentle baritone delivers keen insights about his favorite topics: time, faith, hope, love, and dreams. David has appeared on CBS News/48 hours, NPR, and was a 1999 Kerrrville NewFolk finalist. His story has been covered in US News & World Report, Coping, Presbyterians Today, and his lyrics have been published in Songwriter's Monthly and American Songwriter. He is also the recipient of the inaugural Tim & Tom Gullikson Foundation Spirit award. His songwriting has been praised by such celebrities as Sam Donaldson, Peter Yarrow, and the Queen of Jordan. he tours nationally, performing regularly at folk venues, churches, and conferences. When not on the road, David lives in Virginia with his wife and two children where he continues to write and record. Two new projects are planned for summer 2000.
|
|
||||||||||||||||||
| Jessica Baker - Bio | |
||||||||||||||||||
Hi I wanted to add my story to this website as it is the first information I have found relating to my type of brain tumour. I live in Australia on the Sunshine Coast, Queensland. I had extreamly painfull headaches for Sept - Oct 2003. After visiting doctors complaining of the pain and nausea I was told to go home and take headache pills. The pain persisted and I visited another doctor who my now husband and I insisted that further action be taken and he arranged for a CATscan. Friday, the day before my 26th brithday the results were that I had a brain tumour. My headaches and nausea became worse and an appointment was made to get and MRI on Wednesday and see the nerosurgen at the Royal Brisbane Hospital. I had the MRI and I saw the neurosurgen on Thursday where I was told that as the tumour was located in the pineal region the tumour was most likely to be benign and they would operate. I took a turn for the worse and the last thing I remember was getting a shot of morphine. Next thing I woke up on Friday afternoon in ICU after surgery. A few days later the results from the biopsy came back, GBM (Grade 4) not a benign tumour at all. Now it is August 2004 I have had radiation therapy and am on chemotheray (Temozolomide/Temodal). The surgery removed 70% of the tumour and the last two
MRI's show the tumour has reduced in size to 8x7mm. Temodal, positve thinking,
organic food, meditation and healing I belive have all contributed to
the tumour shinking. My oncologist told me that the radiation would be
usefull but the chemo would most probably not be usefull on my tumour!
|
|||||||||||||||||||
| Sheryl Benton - Bio | |
||||||||||||||||||
| Hello, My wife, Sheryl, has been diagnosed with GBM IV. The story goes like this: Good news first, our first child was born in June 2001, a boy (Caleb). In August of 2001 Sheryl (age 24 then) began to experience severe headaches that Tylenol or Advil would just not help. She began going to doctors for help about 1 month later. Sheryl was told several different things over the course of the next 11 months that would explain her headaches (stress, hormones, too much caffeine, need new glasses, etc) and given several different medicines for migraines - the last being Imitrex. Finally in August 2002 we saw a doctor who told us that Sheryl needed to have a CT scan just to make sure that everything was OK. Well it wasn't. The CT scan showed a large tumor (7.5cm x 5cm) in her right parietal lobe. We were immediately sent to have an MRI and to see Dr. William Hunter, a neurosurgeon, near Charlotte, NC. We discussed the MRI with Dr. Hunter and he was surprised that Sheryl was doing as well as she was based on the size and location of the tumor. Dr. Hunter told us that he needed to get the thing out very soon so surgery was scheduled for August 12. The surgery was very successful, Dr Hunter was able to remove everything that was visible on the MRI, he said 99% was removed because there were surely some microscopic cells left that could not be seen. The surgery did leave Sheryl very weak in her left arm and leg. She is currently going to physical therapy sessions to regain her strength and movement, the doctors are very pleased with her progress. The original pathology report revealed that the tumor was Anaplastic Astrocytoma III. We immediately started our hectic search on what to do, where to go, and what treatments to pursue. With the help of Sheryl's sister, Orenda, we contacted doctors and people in New York, Boston, Houston, and North Carolina at such institutions as Duke, Wake Forest, MD Anderson, and even the Burzynski Institute. We decided to start treatment with Temodar (with Zofran) in 28 day cycles (on 5 and off 23) for 12 months. We also scheduled an appointment at MD Anderson to further discuss treatments with doctors there. Sheryl had an MRI on October 8, 2002 and we flew down to Houston to go to MD Anderson. The MRI looked very good, no signs of regrowth! However, after reviewing the pathology slides there, they concluded that the tumor was actually a GBM IV. At this point we decided to go ahead a have Sheryl receive 30 radiation treatments that the doctors in NC had originally suggested in conjunction with the Temodar. Sheryl is in week 2 of the external beam radiation treatments now. So far the side effects of the treatments have been very mild, we pray that it remains that way, and that the treatments are successful. The past 2 months have been very stressful (spiritually, emotionally, and physically). Many things have given us strength and courage to deal with this disease 1. prayer and faith in God 2. love and support from family, friends, and community 3. good doctors 4. and last but not least, a now 16 month old little boy that just won't take no for an answer! Reading the survival stories on [this] website also gives us hope that this thing can be beaten and Sheryl plans to be around for a long time so she can tell her story and give others hope. Sincerely,
|
|||||||||||||||||||
| Ken Boyd - Bio | |
||||||||||||||||||
| In the summer of 1998, I had just begun my dream job teaching elementary school children in Compton, CA. At the end of that summer I married my beautiful wife, Karen. In October of 1998 I was diagnosed with GBM - Brain Cancer Grade 4 after having headaches for a few weeks. I was told it was very, very bad and the average life span was 49 weeks! Well, to date it has been 16 months since my diagnosis. I have had radiation and chemotherapy as well as brain surgery. Brain surgery was first. It wasn't so bad. Just scary. Then I had radiation for 6 1/2 weeks with an experimental radiation sensitizer called ìGad-Tex.î The whole process was absolutely grueling for my wife and I both. Next, I took 240 mg a day of a biological drug called tamoxifen (a drug commonly used for breast cancer) combined with a chemotherapy called Carboplatin. None of these things worked out--at least not enough. My cancer is back and in an inoperable place. I am receiving a drug called CPT-11 at experimentally in high doses and am very hopeful it will stabilize or shrink the tumor.
|
|
||||||||||||||||||
| Elmer V. Bryant - Bio | |
||||||||||||||||||
| Nov 18, 2001 had a grand mal Seizure and was rushed to the hospital in an Ambulance in the middle of the night. Never had a headache or anything before. Never even had any type of surgeryNov 19, 2001 had a CAT scan and a MRI and they revealed not one tumor but 2. Nov 28, 2001 had brain surgery to remove the big tumor at the back of the skull. The smaller one in the upper left of the skull was to close to vital nerves. Spent 22 days in ICU. Had pneumonia twice. Dec 20, 2001 Transferred to Critical Care Unit. Developed headache, neckache and stiffness of neck. They put me on a pain medicine where I could administer it myself (Max. 6 drops a day). Well it got stuck on and I slept for a day and a half straight before my wife noticed that something was wrong. Nurses disconnected the machine. Don’t even remember Christmas, slept right through it. Slept for almost 2 days. Headache still persisted. Dr. Shandu ordered mega dose of antibiotic to fight infection and she was treating it as if I have Meningitis. Dec. 28, 2001 Midnight - Dr. Disney did a Spinal Tab to determine if I have Meningitis. Dec 29, 2001 Result of Spinal Tab came back good. No infection Dec 31, 2001 was transferred to Rehab Inpatient, to weak to walk. Went into the Hospital weighing 175, came out weighing 135. Not a diet that I would recommend. Jan 21, 2002 was released from Pollock Rehab Center, able to walk, but still weak. Jan 31, 2002 Had biopsy of remaining tumor done at UCLA. Feb 14, 2002 got the results of the biopsy and it was the worst type of tumor, a glio- blastoma Multiforma or GBM. The diagnosis was 6 months to a year max. What a Valentines gift for my family and me. March 21, 2002 Started 6 weeks of Radiation. Monday thru Friday every day at 11:00. Had another MRI and it was all clear. Thank GOD! July 23, 2002 12 months of Chemo (pill form) 5 days of pills 23 days of rest. Started on May 2002 and ended on June 2003. Had MRI’s every 2 months and they are all clear. March 10, 2003 started back to work part time. Every Specialist that I saw said that I wouldn’t be able to go back to work. In fact they said I should go home, get my finances in order and enjoy what time I have left. That made me real mad. I told them I am not coming all the way down here to have you quit on me. And if you are not going to fight for me I will find another Doctor who will! Note: I have been taking Coral Calcium this whole time. Don’t know if it is the reason that I am still here, but I am not going to quit to find out.
|
|
||||||||||||||||||
| Steven Daab - Bio | |
||||||||||||||||||
| My story follows. My first symtoms appeared when I was 16. I experienced periods of intense dizziness. I was sent to a neurologist who believed every thing was psychosomatic. He treated me for 3 years. The frequency of my spells increased through high school and followed into the Navy. I was released from the Navy because they also thought everything wrong was just "in my head". ( how right they were). I was only in the service for 4 months. I was married at the age of 18 and then (I am sure it was just a coincidence) my symptoms took a dramatic turn. I began to experience crushing headaches, gun barrel vision, inability to swallow, no balance, and slight seizures. I was admitted to the Hospital where my Dr. said" we still see nothing wrong but what is not there is now a little more distinct. (we were all filled with confidence after that statement). My mom's GP then saw me and suggested I immediately be transferred to Schenectady General (in New York) and see Dr. Gerald Haines. I was examined by Dr. Haines and was admitted that day. They drilled a hole in my head , attached a tube to a bottle to relieve the pressure build up. A shunt was later installed. This process had to be repeated on three separate occasions due to failures in the shunt. Technology did not yet exist for today's tests. The hospital had not yet purchased a CAT Scan machine let alone a MIR. One test was a pneumoencephalogram. They put me in a chair that went in a circle (like a hamster gage) gave me a spinal tap and put in an air bubble. The chair then moved and they followed the bubble to look for obstructions. Worst test I EVER had. Did it twice. I continued to worsen and the decision was made. They knew where the concern was in my brain but did not know what it was. On Jan 2 1974 a had a craniotomy. Dr. Haines remove a tumor of the cerebellum. The actual tumor was the size of a golf ball with a protein filled cyst attached. It was a low-grade glioblastoma. I received radiation treatment for a long time after. Dr. Haines was and is my angel. I owe him my life. Four years later my shunt had become infected and developed into spinal meningitis. Dr. Haines was amazed just given the fact that I had survived long enough to get sick again. While in the hospital I had a severe reaction to a derivative of penicillin. So out of the 33 day stay I recall about 6. A blessing I suspect. I have some permanent problems. I have terrible balance,( I would fail a roadside sobriety test miserably) and I get head rushes) when in certain rest positions. A road map of scars on my head and stomach (from the shunt). All in all I consider myself blessed and fortunate to be able to tell this story. I have the love of a wonderful wife and two daughters aged 8 & 9. If I may ever be able to lend support please let me know. Steven Daab
|
|||||||||||||||||||
| Susan Davies- Bio | |
||||||||||||||||||
|
Hi! My name is Susan Davies. I also have been diagnosed with a Grade 4 Glioblastoma Multiforme!! (In March 2002) I could hardly believe it! I actually live in Bermuda. I went to Emergency at least 3 times complaining of seeing "flashing lights". Then I sometimes developed a headache and upset tummy...so they assumed it was migraines. I finally decided to follow my sister's advice and see someone in Philadelphia (where she and her family moved to) at the Uof Penn hospital about it. They were excellent! They said it sounded quite like a complicated migraine but if I was American then I could get insurance to cover the cost of a CAT scan which they would do just to ensure that it wasn't something else. It would cost me personally $1,000 if I wanted to do it on my own. As I was going to have an appointment with a visiting neurologist from Boston soon, I said to forget it and they prescribed a drug called, Verapamil for me. I took it daily until I left PA for Bermuda again. The next day, I forgot to take a tablet and had these horrible flashing lights. (I was actually having brain seizures, I now know.) My parents, whom I was visiting at the time, decided to rush me to the hospital with my 3 year old son. When I got there I could not answer some of their questions...then later I had a serious urge to throw up and I did..many times. They did not know what to make of me. My husband was contacted as he was at work catching up on work and finally arrived to deal with me, he's been to the last 2 visits as well. Again, the staff were confused as to what was wrong with me. FINALLY!! At nearly 2am they decided to give me a CAT scan.............they saw a depression in my brain!!! Thank God for the little sweet man in the dept there who finally clued in that it could be something to do with my brain!!! Or else I could be still awaiting a discovery of my problem!! They were thinking of getting me a psychiatrist. So, even though I have this thing, I am still grateful now that we know what it really was! I was told that they would have to fly me out to a city of my choice to perform surgery or look at my "tumor" so I chose Philadelphia- as my sister's family was here, rather than have to stay in a hotel room somewhere and cryall the time. Pathetic! No radiology in Bermuda...I still cannot get over it. Soo many people get cancer in Bermuda- I do not understand. I love the people helping me. They are so friendly and kind. Surgery was done and they removed a 7.75cm tumor!!! I didn't know my head could fit something that large!! People now say, in a joking way, "So that's why she never got the jokes!" Very funny! I am going through the 6 weeks of radiation and then ,or possibly alongside they may offer chemotherapy, which is supposed to be great for brain tumor patients. It does not apparently cause much nausea, vomiting or loss of hair!! Hallelujah!!! The radiation is a bit of a hair nightmare, however. I could lose hair in strange places on my head!! Great. Anyways! I am trying to keep up a positive attitude. I have people all around the world praying for me, even small children! I am 34, a primary school teacher, and thankful to be alive right now to deal with all of this! I know- and keep getting told as well- that this will make me stronger...I believe it will.
|
Susan with 3 year old son Simon
Susan with husband, Gareth
picture of my family with my sister's family
|
||||||||||||||||||
| Laura DeBarba - Bio | |
||||||||||||||||||
Hi! Now that I am 10
months out from diagnosis, I feel that I might be an inspiration to others.
I am 44 years old and was diagnosed with GBM in December 2004. I had surgery
on December 28th where they removed the entire tumor. I completed 6 weeks
of radiation in March and started on Temodar later that month. I have
been rotating through 3 therapies; Temodar, CCNU (oral BCNU), and now
CPT11 (IV chemo). The CPT11 is the toughest and the CCNU was a breeze.
I will complete this in rotating therapy in April. The purpose of the
rotating therapy is that cancer cells become resistant to chemotherapy
if you remain on it for too long. The cells figure out how to defeat the
therapy. This is similar to antibiotic resistance; the bacteria figures
out how to beat the antibiotics. I will remain on Tamoxifen for the following
year and, God willing, that will complete my therapy. I have also supplemented
my therapy with herbal therapy recommended by Jeanne Wallace at Nutritional-solutions.net.
She is a renowned nutritionist and specializes in brain cancer. I have
been doing guided imagery and have just started acupuncture treatments.
I plan to continue the alternative treatments after I complete chemotherapy.
|
|||||||||||||||||||
| Susan Edwards- Bio | |
||||||||||||||||||
| Bio of
Susan Edwards
|
|||||||||||||||||||
| Scott Gerow - Bio | |
||||||||||||||||||
| In September of 1998 I was diagnosed with Glioblastoma Multiforme. My story is as follows. Prior to my diagnosis I had graduated film school in San Francisco and moved back down to Southern California where "the work" is. For the first six months I temped in the hellish world of the Entertainment Industry and lived with my grandparents in Long Beach, California. By May of 1998 I got my first steady job in the industry; office production assistant for a documentary production company which produced programming for The Discovery Channel and The Learning Channel. Although grossly underpaid, I loved my work which was at the level of Associate Producer. I was finally on the road to success. By September I had saved enough money to move out of my grandparents home into a tiny studio of my own. It was dark and small, but for the first time I was going to have my very own place. No roomates! Two weeks prior to moving in I had developed a persistent headache. I was popping Tylenol like candy. I was never one to have a headache, so this was quite surprising. I blew it off as stress and continued to work and prepare for the move. A week prior to the move, my parents purchased a lamp and table and chairs for my kitchenette. I recall being very lethargic and dizzy each time I stood up around that time. Once again, I blew it off to anxiety and stress from the move. The week of the move, the U-Haul truck reserved, my grandma's kitchen cleared of extra utensils, pots and pans, my headaches continued and my right eye became blurry. But this time I thought I had it all figured out. "It all made perfect sense," I told myself. "I've been wearing an old pair of prescription glasses with a scratch on the right side. The old prescription was giving me the headaches and the scratched lens was giving me a blurry eye." On the advice of my grandmother, I took a "half day" off of work to go to her opthamologist for a "new prescription." Little did I know the "new prescription" was about to become the least of my worries and the "half day" off work would be the last day of my employment with this particular company. Once at the opthamologist's office, I was whisked away to the usual eye testing room, reading the big "E" on the chart and testing many lenses for my own prescription. I knew the day and my life had taken a sudden turn when the doctor shone his miniature flashlight in my eyes and said, "Uh, oh." Yes he literally said "uh, oh." "Bad prescription needed, right doc?"
I was nervous as ever. It was the longest wait of my life. When the doctor returned, he said, "we need to get you to a hospital right now." My mother was called from work and took me to Harbor UCLA hospital at the advice of my opthamologist who knew I didn't have health insurance. The place was creepy, but we ended up staying. After a few hours I took a CT Scan. I waited for my results and distinctly remember a group of doctors approaching me in what felt like slow motion. The doctor leading the group had a tragic look on his face. He did not allow for any cushion. "We are sorry to tell you, you have a mass in your brain which looks like a tumor." Instantly I thought, "no big deal, with modern technology they'll probably just zap the sucker." The "C" word never even crossed my mind. The next two weeks were a blur. Monitoring in ICU, Surgery, and recovery. Prior to surgery my surgeons informed me only 50-60% of the tumor was operable. The rest is on the corpus callosum. If this area was operated on I would not be typing this today. A tennis ball size tumor was removed from the right frontal lobe of my brain. A few days after surgery I discovered it was malignant and called an Astrocytoma. The grade or aggressiveness was to be determined by pathology. I was told it would be a grade 3 or 4 on a scale of 1 to 4. By the end of the week I was told I had a four. I figured I'd always been an overachiever, I might as well get the most aggressive brain tumor possible. Soon enough I found out that because my Astrocytoma was a grade four I got a special name for it. Glioblastoma Multiforme or GBM for short. That was September of 1998.
|
|
||||||||||||||||||
| Nicole Giorgio - Bio | |
||||||||||||||||||
| I am Nicole Giorgio - I am 33 yrs. old. I was living in Austin working as a Speech Pathologist and also at Texas School for the Deaf I was 3 days from leaving for the Peace Corps when I was rushed to the hospital to have a tumor removed from my brain. It is a GBM and I was diagnosed on Oct. 5th of last year. Due to my prep for Peace Corps this left me with no insurance, etc. I continue to plan for fundraising and doing some work in drawing attention to the fact that people - once they are granted disability are often left without medical coverage by the government. In addition there is a 24 mo. wait until Medicare is available unless you have ALS or In Stage Renal Disease. I find this unacceptable. Since my diagnosis I feel as if I've become a different person: enjoying the moment more, working through things..and generally trying to figure out what comes next for me. I was quite the workaholic and hardly ever looked up from the "grindstone" to "smell the roses." Since I have been recovering and doing much to navigate through red tape, etc..also researching things like your group! I am thrilled to find a group for younger people and want very much to be included!
|
|||||||||||||||||||
| Marci Gray - Bio | |
||||||||||||||||||
I am Marci's husband, Kevin, and she has asked that I add her story to your website as details sometimes fail her now. Marci is a 36 year old mother of 2 boys (ages 6 & 9) and 1 girl (age 8). In 2002 she worked at Home Depot and I at Research In Motion. We had our health and promising careers. Marci was experiencing short term memory loss in the fall of 2002 along with somewhat strong mood swings and headaches. We attributed these to many things, inner ear inbalance (doctor), job stress and my layoff from RIM. On January 12th 2003 we discovered what the real problem was..... Marci suffered a severe grand mal seizure. I learned within hours that she had a tumour and within days that it was GBM 4. Our life would never be the same. We discovered that Marci has 3 tumours; 1 on the left frontal lobe, 1 on the right temporal lobe and another above the cerebelum. The only tumour that was operable was the right temporal lobe, where a baseball sized growth was removed in Feb 2003. They got 60% of it. After recovering from surgery, Marci went on 6 weeks of full cranial radiation simultaneously with temezolomide chemo. The thought being that it would be more effective this way. The hospital is 1 1/2 hours away so we tried keeping her in residence during the treatment. This did not workout so well so she was hospitalized during the 1st week and for the duration of the 6 weeks due to being extremely nauseated, very weak and still suffering from headaches. After the 6 week treatment Marci came home and continued chemo from there, as temozolomide is in pill form. The chemo regime started out as 5 days on chemo and 7 - 8 weeks off. she started out taking 390 mgs/day and went down to 180 mgs as the side effects were too great. she has since moved up to 200 mgs and will likely increase the dosage with the next round (Jan 12, 2004) as she is responding much better to it. No more nausea !!!! Her regime is now 1 week on and 4 weeks off chemo, which will continue for as long as positive results are observed. Zofran has been the anti-nauseant. We tried as much as possible to continue living a "normal" life in 2003. We celebrated my brothers wedding and our daughter's 1st communion in May; we went to Darian Lake amusement park in June, a week at a friends cottage in July, went to Disney World in September and had a great xmas with family. We have had an enormous amount of support from family, friends and complete strangers. The trip to Disney was funded by an anonymous wish foundation. Marci has had a very positive outlook throughout most of 2003 and although it has been difficult, due to the medication and cancer, she has fought hard to keep a positive frame of mind and live as full a life as possible with our children. You should have seen the unbridled joy she exhibited when she met Mickey Mouse The MRI's throughout the spring and summer have shown no growth in the tumour and the last two (this past fall) have shown a slight reduction in the tumour's size. Even with this positive news this last year has caught-up with Marci and shortly after xmas...looking to the new year, she has exhibited a fair amount of what she calls "stinkin' thinkin'" and has looked to others on the YASG website to help provide postive energy. She fears what the future holds for her and has been overwhelmed by it. Marci starts her next round of chemo on January 12th 2004 and will have another MRI in early Feb.
|
|
||||||||||||||||||
| Mark W. Greenleaf- Bio | |
||||||||||||||||||
| MARK: SYMPTOMS: Finally one morning I woke with a headache of such intensity that I actually had to pull over on my way to work as I couldn't even see ahead of me. On this day I decided that it was time to see a doctor, so after work I went to the urgent care near my office. I was diagnosed with a sinus infection and given amoxicillin to take care of the infection-induced headaches. I took the pills for a week and still my headaches did not go away. So I went back to the urgent care complaining of increased pain and pressure in the back of my head. At this point the pain was so intense that it felt like someone was pressing an ice pick into my skull. The doctor took another x-ray and still only saw a slight infection of my sinuses. It was then when I was directed to the emergency room, as a small infection could not account for such headaches. On Sunday May 12, 2002, I arrived at the ER and reported my symptoms. I was immediately sent to a CT scan. At about 11pm my CT started and I lay motionless on a table for what seemed hours. I met with a doctor shortly after to hear the results. I was told I had a tumor near my lower cerebellum. I asked about a million questions and was told that the tumor appeared to be encapsulated, meaning it hadn't grown "tentacles" into other brain tissue. Nevertheless, the doctor said I would need further tests such as an MRI and would likely need surgery soon. I was admitted to the hospital right away. I spent the next two nights in the hospital being woken up every few hours to perform simple physical tasks and have blood drawn. I received another CT scan followed by an MRI. The tests only reinforced the original CT; there was a tumor, but that was all they could say at this point. Surgery was scheduled for three days later and in the meantime I would be able to go home since I was not exhibiting any physical symptoms of the tumor interfering. 911 - The next thing I remember is waking up in the neurological intensive care unit at the hospital. I saw nurses and doctors all around, and I was told that the tumor in my head had hemorrhaged. This is what had caused the intense pain. The doctors said the hemorrhaging was very rare and completely unexpected. If it weren't for the quick action of my girlfriend, I could have died. I had been rushed into emergency surgery in the middle of the night. I don't remember most of this day; I only remember the pain. Now though, the tumor was gone. So was the headache. After some recovery, I was transferred to a new room and was able to meet with the young doctor that performed the surgery. He told me that the surgery went well and that he was able to remove virtually the entire tumor, something that does not usually happen because most tumors have already entwined with other brain tissue by the time surgery is performed. Also, the tumor had been "hanging" in the empty space by my third ventricle, allowing it to be more easily and cleanly incised. Most people having brain tumors removed are left with far more tumor remaining since it would be too risky to remove it completely from sensitive brain regions. Much of the time GBM tumors are in, and interfere with, speech or memory or movement regions of the brain. My tumor had been very near my respiration and circulatory centers. CONFIRMED DIAGNOSIS:
|
|
||||||||||||||||||
| Chris Guyer - Bio | |
||||||||||||||||||
My name is Chris Guyer, I am 31 years old structural engineer,and I have a glioblastoma. I was diagnosed in 2001 at the age of 28. At the time
of diagnosis, my doctors told me I would not survive more than 5 days.
Now, nearly four-years out, I look back on my "early days" in
dealing with this, and I do not seem to have a strong enough appreciation
of how lucky I am. I understand that being diagnosed with a gbm is like
being struck by lightening twice in one lifetime, but I would just like
to tell those newly diagnosed readers that it is possible to do it. It
takes more patient, persistence and determination than you have ever needed
in the past, but it is possible to beat this thing. First, you must educate
yourself about every facet of this disease from treatment options, biologic
behavior to statistics. There is no substitute as the patient for education.
Your doctors do NOT know everything, nor will they tell you everything.
Also, finding a pier group is important, you will need to find people
in your rough age group who are going through the same things. If only
to have a class of friends who know what you are going through and dealing
with. They will become indispensable as you travel this yellow brick road.There
are those of us "long-term" survivors who do beat the odds)I
am the first to acknowledge that others who have traveled this road before
me are the real heroes, people like David Bailey, and Ben Williams, who
god willing will continue to suvive and provide inspiration to all of
us. I hope that as you read this that you will find some hope in knowing
that this disease can be viewed as a "wake-up" call and that
it allows you the opportunity to reevaluate your priorities in life, and
as I call it, you can begin to define your "new "norm"
because your life has changed at its' very core, and you must learn to
accept that. It will take some time to grow accustomed to this,, but you
will. Persistence is the key, and just realize that you need to live every
day to its' fullest. I find it important to talk with friends, coworkers
etc. about my situation because nobody really understands it or can identify
with it.. And know that some never will. And when you come to accept what
has happened, you can begin to be comfortable with living your life the
way you want to. Rather than from MRI to MRI. I know that sounds easy
to say, but hey, as the Samples say,
|
 |
||||||||||||||||||
| Tim Hernandez - Bio | |
||||||||||||||||||
| What can I tell you about us... our journey has been an interesting one. TIm and I went to High School together. Then after college and all that -- came the planning of the 5-year reunion. The reunion was August 19, 1995. He cooked me dinner the next night and on New Year's Eve 95 we were married. While we were dating, we both began to experience headaches on and off. I went to the doctor and got a script and it took care of it for the most part. Tim, being stubborn let it go for a while. By Feb. 96, after trying a new eyeglass prescription - he is a high-end computer engineer - he relented to seeing a doctor. The doc dismissed it as allergies or stress. Gave him various meds to try and sent him on his way. This route of treatment continued for almost three years with this doctor. In the meantime, we had our first child, Kevin - born Sept. 3, 1997. Four months after his arrival, I started having bad headaches - so I went back to this doctor. We both saw the same doctor in our old hometown though it was about an hour-away, familiarity and all I guess. I went in with the baby-in-toe and told him I was having headaches and the other script worked but I was using it often. So he gave me a beta-blocker to take daily. Now, I had told this doctor four times that I was nursing my four-month old exclusively and would the drug be safe? The doc was a family practitioner so I figured he was reliable. Well, within 48 hours, Kevin was knocked out and we were on the phone with Poison Control and the Children's Hospital after looking on the net and seeing how you should NEVER take this if nursing.... They all suggested to stop the drug but the baby would be okay. So that was the last straw, Tim asked me to find him another doctor in the Hartford area. I asked a friend and got a name and he got an appointment. This new doc was astonished that Tim had never had an MRI in the three years of headache complaints. So that's the first thing that was ordered. An MRI and then PET scans. The new doc gave him several types of migraine drugs to try as well. Things were delayed while he was out of state for 4-months on business (April to July 98) -- at which time we also found that #2 was on his way! :-) Tim came home with a lung-problem that needed to be taken care of then they did another MRI in mid-sept. And then another. A PET scan was scheduled on Jan 5 1999 but of course, that was the day I was scheduled to have #2 induced. We were not postponing that and he happily postponed the PET. The tests were pushed (by Tim) until late March and he even had a scan on Easter Sunday. On April 23, we received the devastating diagnosis oligoastrocytoma III. Appointments were scheduled for a biopsy and confirmation at Mass General Hospital on May 15. So he decided he didn't want the rest of the family to know until we had it confirmed. WE were scheduled to move on May 3 so Tim and his father packed on that Sunday and Monday and supervised the movers. While they were doing this, Tim was beeped and told to be in Boston the next morning. Since no one knew the truth, he told the family it was a meeting and went alone. They did the biopsy and immediately did his first round of CPT-11. After that, he would do radiation twice a week at a local hospital in Hartford. That lasted for two months, he began to get too sick from the chemo and didn't want that. He needed some time to deal and get better - so we rented him a one-bedroom apartment in the woods near his office. He was still working up until this point. By late July, he had to essentially stop working. He did some work from home and would go into the office at night to minimize his exposure. At this time, also had a new biopsy and yet again we were devastated -- tumor size had progressed new diagnosis Glioblastoma Multiforme. They told him to call hospice and give up 2 weeks to 6 months left. And that is what he did for a while. Thankfully, the drug Temodar was released DAYS after the diagnosis came down. He went on that and though the month of September was pure hell emotionally for all of us -- we survived. Tim came through it with a better resolve not to let things get him down and to FIGHT! An October biopsy showed that it was helping and we had a 10% decrease. So we had more of a HOPE! Tim decided that the time had come to come home and fight with his kids and wife by his side 24-7. And at this time, while we were working so hard on staying normal in our lives, we of course got another blow. His company decided to terminate employment. That meant insurance was in jeopardy and of course, being only 27 we hadn't done anything about life insurance YET! So we would lose that too... Thankfully, though, Tim knows TOO many people and another company hired him with full willingness to get us health insurance and support his schedule. Things have pretty-much continued along the path of treatment and work for a while now. Tim did decide to switch doctors after the September incident and is now fully being treated out of St. Francis in Hartford. He has had his records sent to various places all coming back with essentially the same response -- not much we can do. NOT AN OPTION! We went as a family - his parents and mine included -- to Disney World in Florida for 8 days at the end of January. That was a nice get away. And Tim wasn't feeling too bad -- he rode the Tower Of Terror even! Listening to the LAW of the doctors really isn't for him that's for sure! Since we've returned his headaches have increased and he sees the docs a lot more. But we really haven't given up hope. He thought of discontinuing the treatments all together since it makes him sick and tired. BUT... those little boys are too damn cute! He pretty much only works from home now but he can go to the office - they have suggested it's a bit too far to drive (about 40 minutes) but his license is still intact! We finally got his work life insurance policy converted to a personal policy earlier this week - that was a nice long 6 month fight! But even still, Tim is researching our next move when the lease expires in June. We'd love to buy but that's not a realistic goal! We will rent something in a more quiet area -- we are right next to the highway! And he is working from home about 25 hours a week - computers are the coolest invention! :-) composed by Tims wife Erin
|
Tim with family
|
||||||||||||||||||
| Tim Herron - Bio | |
||||||||||||||||||
My story of 15 years of survival: Live and love in light of eternity
|
 |
||||||||||||||||||
| Ken Higginbotham- Bio | |
||||||||||||||||||
| Hello! My name is Shan Higginbotham. I am writing on behalf of my husband, Ken. Ken was diagnosed with a Glioblastoma Multiforme brain tumor the week of his 34th birthday in June of 1998. I read your stories with great interest, sadness, hope and inspiration all rolled into one. I'd like to add a little hope and inspiration of my own if I may. Ken went through two surgeries, 34 radiation treatments, and over a year of chemotherapy. That was a very long two year period. But I am very happy to report that we are two months away from our 4-year anniversary of being cancer free!!! We know that is almost unheard of with GBM. We feel so fortunate and blessed by God to be able to share this with all of you. There is hope! Don't give up the fight! As I write this, my husband is gone to an umpire's meeting. He is a baseball, basketball, softball, and volleyball official for high school. I'm very happy to report that he has a game to officiate Thursday and Friday. In the beginning I thought we would never be "normal" again. But we are living a very "normal" life now with our two beautiful daughters, aged 5 and 7. IT IS POSSIBLE! I would love to hear from some other survivors out there. Sincerely,
|
|||||||||||||||||||
| Mary Holtkamp- Bio | |
||||||||||||||||||
| In August of 2000 I was diagnosed with a GBM IV after having a seizure (my only symptom). I am a 42 year old woman who is an elementary teacher. At the time this happened, my family (husband Gary and two children, son Nick now age 13 and daughter Leslie now age 11) was moving to a new town where my husband had taken a job transfer and I had accepted a job teaching 2nd grade.We still were not completely moved in and school had not started yet. After initial diagnosis, I had surgery, followed by chemo and radiation (together). I tried to go to work during this time, but the radiation really brought me down, so I gave up teaching during the 2000-2001 year. My last treatment was in August of 2001 and I taught 3rd grade during the 2001-2002 school year, with no sick time other than my regular appointment days for follow-up MRI's, lab work, and doctor visit, all of which turned out with positive results. Since my diagosis and treatment, I have had no other problems. The doctor who performed surgery told my family that I would most likely be back in within the year for an additional surgery. The prognosis for me was not good. While all of this was going on, I never once thought this was my time to die. When my family and friends reacted as though this was an awful situation , I felt all along that everything would be okay and I would survive this with no problems. And so far, that is what has happened. I realize that the tumor can come back at anytime, but I also realize the this can be beaten. I truly believe that God has been my saving grace, along with very qualified doctors. I would love to hear from other people with this same illness. Even though I have a very positive outlook, I still know that there may be things that I may need to face eventually, and it is a very scary thought. Having others to talk with who have these same fears, helps to ease these emotional upheavels. Thanks for letting me share my story.
|
|||||||||||||||||||
| Candice Jackson - Bio | |
||||||||||||||||||
| On July 17, 2001, after many years of problems, I had a hysterectomy. I had a huge ovarian mass (47 pounds) removed and tested for cancer. It came back borderline positive for epithilian ovarian cancer which meant it was malignant, but completly removed with the tumor and had not spread. I was thrilled. Not only did my gynecologic problems resolve, but during that surgery, I lost 53 pounds in just a couple of hours. I felt fabulous!! I was going to be off work for 6 weeks and could then resume normal activities. During the course of my recuperation, I began having headaches. Prescription Motrin seemed to work at first, but the pain would gradually worsen. I spoke to my GYN doctor about them, and neither of us could explain. Maybe it was the shock to my system that the surgery triggered the headaches, maybe it was a latent effect from anesthesia, maybe I needed my eyes examined. I made the mistake of saying they weren't so bad and blew them off. I felt so good about myself that I figured a little headache now and then was not so bad. I went to my doctor for my final post-op visit and told him I felt fabulous and was ready to return to normal activities. That was on a Thursday. On Friday, I went to have my eyes examined and was told I either had optic neuritis or a brain tumor. Laughing, I told the doctor that I had already had my quota of tumors (one per customer, please) and he referred me to a neuro opthomologist at the Kresge Eye Institue, a world famous facility located in Detroit. It would take a few weeks to get in, but I was not worried. My husband and I celebrated that weekend. I felt good - better than I had in years except for the headaches. On Sunday morning however, I woke up in total agony. I got out of bed to take a Motrin and began non-stop vomiting. I had previously worked in hospitals as a unit clerk and knew enough about medicine to be dangerous. I also knew that something was drastically wrong and I would be making a trip to the ER. I woke my husband up and told him to get dressed. I thought I was having a stoke. I somehow managed to take a shower - I couldn't go in smelling puky. In the shower, I tried to calm myself down and think clearly. I got out and I think managed to put on my robe when the vomiting began again. That was the last thing I remember. It was October 9, 2001. When I woke up, I saw the television showing horrible scenes of plane crashes. Thought it was a Bruce Willis movie. Then I realized I was not home. I was in ICU and the show I was watching was the World Trade Center disaster. Next I saw my entire family, my friends, and doctors all at my bedside. This I knew was not a good thing. I remember asking if I had had a stroke. I remember hearing the words brain tumor, crainiotomy, options, cancer, and then I remember freaking out and having trouble breathing. My husband told me later that I was sedated and everyone was asked to leave. When I was calm enough, the neurosurgeon and my husband explained to me that a Cat Scan showed a brain tumor and that I would need surgery to remove it. It was large and located on my right occipital lobe that affected my vision. Surgery was done on September 13th and that was when I learned I had a GBM grade IV. I would need radiation therapy and chemo, but was given 6-18 months to live. This could not be right. I am only 47 and we had a 25th wedding anniversary in January. I went through 6 weeks of daily radiation thereapy combined with chemothereapy. I was not eligible for any clinical trials due to my previous ovarian cancer scare. But Temodar was new to the field and I was put on that in conjunction with steroids, anti-seizure meds, pain and anxiety relievers, etc etc. It took a while to regulate all the meds, and after 12 days, I was released home. Radiation did not hurt at all, but I was severly depressed. I lost my hair in a pattern that resembled railroad ties and opted to shave the rest off. I was terrified of taking the Temodar, as chemo drugs have such a bad reputation for making people sick. The temodar had virtually no side effects and I was thrilled. However, the Decadron (steroid) made me swell up like a balloon and turned me into a raving loon. We still are not sure if it was the Decadron alone, or if a combination of the fact that I was thrown inot menopause just a few weeks earlier. The Decadron was to relieve the swelling on the brain and therefore a necessary evil. We also found that I was having difficulty with Dilantin, and was put on a combination of Keppra and Neurotin to control the seizures. I was drugged up pretty good. I slept about 20 hours a day. After a period of adjustment, I felt up to trying to return to work. My husband's job does not have inusrance benefits, so I had to keep working to keep the Blue Cross in effect. My employer was the kindest and most generous man. I work for a small family run business and they treated me like family. Even though I was unable to work a full shift, the continued to pay my insurance. That was one less worry I had. After a few weeks of working a limited schedule, I was feeling a little queasy one day and went to the bathroom. I was trying to ccall my husband to come get me and when I woke up, I was back in the hospital. I had another seizure at work and they called 911 and my husband. Another MRI showed increased swelling and my steroids were adjusted. Soon I realized that working was out of the question and I had to apply for disablility. My tumor had left me legally blind in my left eye and limited vision in my right. Driving now is not really an option. We had to cobra our insurance (pay the premiums) on our own. Between my loss of income and the cobra payments, we would soon be bankrupt. My generous employer paid my premiums and I will never be able to return that act of kindness. After 9 months of Temodar, which was the recommended length of treatment, I was put on BCNU chemo IV. In order to protect my failing veins, a port was installed surgically in my chest. About a week or so after the port was implanted, I broke out in what appeared to be blisters on my face, chest arms and upper torso. Shingles. Yet another drug. They cleared up but left me with a very painful left arm. Evidently the shingles settled on some nerve endings in my arm causing the pain. Some studies indicated that Neurotin could help those nerves, so my dosage was increased. Soon the pain diminished to a tolerable level. Soon, however, the insurance went up 20%. My boss could no longer afford to pay the premiums, so we had to assume that debt. We were able to pay the first month, but at $1000 per month, we could not afford more. We did not qualify for Medicaid or other assistance, so we were on our own. My last MRI showed no new growth so after careful consideration, we decided to take our chances. I stopped all treatments and medications except pain and anxiety relievers. A few days before our insurance ran out, I filled all may meds in the event I decided to start taking them again. I had been approved for disablility and Meidcare, but Medicare would not become affective until January 2004. That meant about 5 months of no insurance coverage at all. We were scared, but something amazing seemed to be happening. I actually felt better off my meds. I could think clearer. My legs were weak and I had difficulty walking, but my mind seemed to be fairly clear. In the 2 years since my diagnosis, I was finally drug free. I would take an occasional Vicodin for pain or a Xanax for my nerves, but overall I remain drug free. It is now New Year's Eve 2003. Tomorrow I will officially be a Medicare recipient. I have lived with this cancer for 2 years, 3 months and 22 days and I still keep on ticking. I don't know why. I do know that I have gotten to meet my grandson born on September 9, 2003. On the 2 year anniversary of my initial encounter with GBM. I did not think I'd ever get to live to lay eyes on him and that was my biggest regret about being terminally ill. I still have a lot of issues with the whole situation, but if I can stay busy of mind or with my hands, then I don't dwell on it. Waking up to the terror attacks in New York really helps me put my situation in perspective. Yes, I am sick. Yes this will probably kill me soon. But my pain is minimal compared to the loss suffered on 9/11. I have been lucky to have had my family and friends around me supporting me. Those victims never had a chance. I have my grandchildren Autumn and Benjamin and I am truly blessed. I have a wonderful husband Bob and 2 dear daughters Courtney and Christi and Art my son-inlaw is the son I never had. A wonderful marriage, a happy family and the fact that I have outlived the odds, what more could a person want. To all other GBM victims, survivors, and support team members, I wish you a blessed New Year and my prayers. Candace Jackson
|
|||||||||||||||||||
| Sharon Jeffries - Bio | |
||||||||||||||||||
| Hi, I am 34 years old and was diagnosed with GBM in October 2000. I have had one operation, a full course of radiotherapy and now have to make a decision about whether to have a course of chemotherapy. I am feeling quite well at the moment but my latest scan showed that the tumour has started to grow again (hence the chemo decision). Any comments on other peoples experience of chemo would be appreciated ('cos I'm a bit scared). I think the drug I would be taking is PCV - has anyone heard of it? I'm trying to stay positive but as you will all appreciate, staying positive isn't always that easy!
|
|||||||||||||||||||
| Melissa Mariman - Bio | |
||||||||||||||||||
My name is Melissa Mariman. I am 30 years old. I am an anesthesiologist and I just finished my residency training in Southern CA the end of Feb 2004. Finally I was able to move back to the Seattle area so my husband and I could stop commuting. As a gift to myself I took some time off between residency and starting work. I took my mother on a trip to London the first part of April 2004. This is really the only tip off that something may be wrong. It was a cold day there and my hand was a little numb. I had trouble turning a knob on the faucet with my left hand. My fine motor coordination just seemed a little off in that hand. Other than that, the only symptom I had had were some mild recurrent headaches that were relieved with Advil. What resident that works long crazy hours doesn't get a headache now and then???? When I returned home from London I saw a hand surgeon I knew, and followed up with a neurologist to rule out carpal tunnel. As for my mild headaches, they thought maybe the start of migraines ( I did fit the profile)--but they just weren't that severe. After nerve testing, they found a 25% decrease in function of my radial nerve in the left hand. I'd probably slept on it weird, but to come back if it wasn't better in a few weeks. On Friday, June 25, 2004 I worked a full day doing anesthesia with no problems. The next day, Saturday, June 26 I woke up with a headache and just didn't feel well. It was a warm day and I threw up on the way home from the store. That night I gave myself something for the nausea so I could at least get some sleep. The pain was moderate, but not incapacitating. Monday, June 28 I called my primary MD and told her I thought I was having my first true migraine. She saw me at 10 am and had me in the MRI by 12 noon. As I was coming out of the MRI the tech came and got me to take me to the radiologist that was waiting with my husband in the dark room. That is when they told me that I had a right parietal tumor. It really wasn't a surprise to me because it all just made perfect sense in my medical mind. I was whisked off to the ER where I met the first neurosurgeon. He told me it was inoperable because of the location on the motor strip.They could do a biopsy, but that was it Thankfully my primary had set up an appointment with an oncologist, When the oncologist asked me what the surgical option was, I said there wasn't any. She excused herself and told me I had an appointment in one hour at U of WA with someone who only does brain tumors. Thursday July 8 I had surgery via extensive MRI mapping to remove the tumor. It has been classified as a successful gross resection of the tumor. I spent a couple days in ICU and went home July 12. At my post op check July 14, I found that they had presented me at tumor board that day. The path report was just as we thought it would be--- GBM Grade 4. My surgeon told me that I had an appointment downstairs right now. with the neuro-oncologist and the radiation oncologist. I was given my treatment options and set up for all the imaging studies to start radiation, I start chemo( Temodar) and radiation treatment Thursday July 22 for a six week course. My utmost thanks to the amazing team of medical professionals I work with--it has restored my own faith in medicine!!! And a super huge thank you and I love you to my family and friends---you guys are the ones carrying me through this!!!!!
|
This is me ( Melissa Mariman ) and my husband ( Jeff
Hensler)
Family picture (brother, sister in law and niece)
Picture of my best friend Alex and myself in
|
||||||||||||||||||
| Clifford Marks - Bio | |
||||||||||||||||||
| On October 27th of 2001 I suffered a series of gran Mal seizures that put me in stasis. Thanks to my precocious 7 year old daughter, 911 was dialed and I woke up the next day in the Neuro ICU of Poudre Valley Hospital (1 hour to the south-- I live in Laramie, WY). I visited with the neurologist there who diagnosed a likely low-grade astrocytoma. I then visited with Dr. Kevin Lillehei in Denver a few days later, who confirmed that the mass had the appearance and activity of a low-grade glioma. As it was in my right frontal lobe (a "silent" area of the brain), surgery was scheduled for 11/15/01. The growth was successfully removed (radiological GTR), and I began rehabbing about a month later. The pathology showed that it was an Oligoastrocytoma grade 2 (mixed glioma) that did not have a lot of markers that would point to future aggressive activity. I stayed on Dilantin through June, 2002, simultaneously engaging in a rigorous exercise campaign (I went into the hospital at around 280-- knowing that these tumors recur, I vowed to myself that if I had to go in again some day, I'd be in shape). I lost 50 pounds through exercising and sensible eating. I suffered another seizure on 2/22/03, ironically again in the presence of my daughter. I was sitting in a cheap plastic chair poolside at a Comfort Inn reading Emily Dickinson when I pitched forward and broke my fall with my face (I broke my nose, ruined my septum, left orbital bone, suffered a concussion, bruised my shoulder, and needed sutures in three different areas on my face-- I guess weighing around 230 was still too much for my face to take!) I awoke in an ambulance headed to the Casper Medical Center where a Cat Scan did not reveal any gross changes in my neuro anatomy. A week later I scheduled an MRI with my neurosurgeon in Denver. The MRI revealed an enhancing lesion that looked, radiologically, like an anaplastic recurrence of my mixed glioma. We scheduled surgery for two weeks later. I had my surgery last Tuesday (3/18/03), where the doc removed the new tumor, plenty of margin (re: brain), and left gliadel wafers in what was once my right frontal lobe. The pathology revealed that the tumor had progressed from an OA 2 to a GBM4. Oddly, I'm feeling lucky. There have been no cognitive or physical deficits. Anything that has grown in my brain has been excisable. I have a great support group starting with my wife and child and moving through my family to my friends and co-workers. I'm aware that my sanguine feeling can change in a moment, which is scary. But we're all facing the fear of the immediate future with this beastie.
|
|||||||||||||||||||
| Marilyn Martinets - Bio | |
||||||||||||||||||
My name is Tammy Freeman
and I am the daughter of Marilyn Martinets who is 49 and will be 50 on
Aug 30. This is how her story goes. On Christmas eve of 03 my mother was
in the kitchen and had her left arm pretty much go crazy on her. Then
it happened again on the 26th of December. That day she went to Round
Rock emergency room where they did a MRI and diagnosed her with having
seizures due to a brain tumor or stroke. They sent her home saying this
was an expensive babysitter.
|
Feb 8th day before surgery in the hospital with all of us is; My mother [Marilyn], me on the right with short brown hair, my son, sister and her 3 kids
March 12 at DPS with her friends and co-workers,
|
||||||||||||||||||
|
|
|||||||||||||||||||
bios | treatments | updates | introduction | contact us | links |
|
||||||||||||||||||
 |
|||||||||||||||||||
| YASG.com ©
2000-2006 | design: mixed media
expressions
|
|
||||||||||||||||||
