SURVIVORS STORIES
© This is your page to tell your stories. We can all learn from each other. Please feel free to send your survivor story to
Email HOPE. Or you can feel free to just share a poem, a picture, a thought, a prayer, a verse, whatever is on your heart.
Hope Abides
Hope abides; therefore I abide.
Countless frustrations have not cowed me.
I am still alive, vibrant with life.
The black cloud will disappear,
The morning sun will appear once again
In all its supernal glory.- Sri Chinmoy
SURVIVORS STORIES
• Dan's Story (Told by his wife, Lisa)
• Erik's Story (Told by his mother, Norma)
• Sally Shipley (Told by her husband, Mark)
Judy Grim
Brain Tumor Survivor
6 cm Brain MeningiomaMy brain tumor journey began on 05-22-07. I had a cervical MRI to try to determine why I was having tingling down my right arm. That afternoon, I received a phone call from Dr. Anderson to let me know that I may have a brain tumor called a meningioma. The following day I had a brain MRI. Another phone call to tell me that Yes, I had a brain tumor. I was referred to Dr. Malik, Neurosurgeon, who saw me on 05-24-07 for my diagnosis. I was diagnosed with a 6 cm. left posterior fossa meningioma that was pushing my cerebellum & was close to my brainstem. I also had nerve and spinal cord compression at C5&6 and C6&7. I was told that since meningioma’s are typically slow growing, a tumor of that size had likely been growing for 10 - 20 years. Needless to say, it needed to be removed. According to Dr. Malik, my neck needed to be stabilized before a craniotomy could be done to remove the tumor. The cervical surgery was scheduled for June 27th.
Both doctors were amazed that I hadn’t been experiencing side affects, one being lack of balance. Well, you see, I’ve had Cerebral Palsy since birth. About 12 years ago I started using a walker because of lack of balance. It’s possible that side affects of the tumor were so similar to things that could be caused by my CP, that the symptoms may have been overlooked.
I decided to have a second opinion done at Johns Hopkins. The recommendation was to correct both problems with one surgery. After consideration, I decided to proceed under the care of Dr. Malik in Salisbury, MD and his recommendation of two separate surgeries.
Sandra Wyatt made contact with me after hearing about my diagnosis from a friend of a friend. We met for brunch on June 12th. What a blessing she was and still is! Finally someone who truly understood much of what I was feeling and could support me. She gave me a bagful of goodies & information. She knew firsthand how important understanding and support was. She has been with me through every step of this grueling experience andI thank God for her and HOPE With Support.
My cervical discectomy and fusion was successfully completed on June 27th and I recovered nicely. My brain surgery was performed on Sept. 6th. The tumor had encased one optic nerve, which fortunately did not interfere with my eyesight. Most of tumor was removed. Dr. Malik cauterized what he had to leave against a vein. Titanium mesh was used to close my skull. Thankfully, test results showed that the tumor was benign. I spent the first night in ICU. The next day I was moved to private room. I had an MRI done to be sure all was well. I was released on Sept. 9th.
It is now January 12, 2009 and I am doing well. The only visible sign of my brain surgery is a dent in the back of my head & a scar down to my neck, all of which are covered by my hair! I am working with a fitness trainer, who is helping me regain some of my balance. Only time, hard work, support from my family and friends, and God’s help will tell how much this will improve.
I also want to share with you a reflection I wrote in June of 2007 after hearing the message, “You’ll Never Know” during the Holy Trinity Sunday service. This past Holy Trinity Sunday, one of the readings was Romans 5:1-5, which I have included below.
Therefore, since we are justified by faith, we have peace with God through our Lord Jesus Christ,
through whom we have obtained access to this grace in which we stand;
and we boast in our hope of sharing the glory of God.
And not only that, but we also boast in our sufferings,
knowing that suffering produces endurance,
and endurance produces character,
and character produces hope,
and hope does not disappoint us,
because God's love has been poured into our hearts through the Holy Spirit that has been given to us.These are verses that are now highlighted in my Bible at home. Bible study is difficult for me. Some passages I just don't get. But this one just stands out to me. You see, I don't mind sharing my life's stories. So, I guess that's boasting as is referenced in the reading. I never considered that sharing my stories could have anything to do with sharing the glory of God as well as my sufferings. I just knew that sharing was helpful to me & hopefully not boring for the listener. And now for me the neat part of this reading, suffering produces endurance, endurance produces character, character produces hope & "hope does not disappoint us because God's love has been poured into our hearts." WOW, how comforting that is.
At the 11:00 service, the message was "You Never Know." My life has had many twists and turns and I certainly can relate to that. I am preparing myself for a summer full of "You Never Know." I am facing two surgeries. It's going to be a most unusual summer. Normally, a big part of my summer is spent outside in my pool and oh how I love that. However, God's got other plans, but He's blessed me with hope & His love. Awesome!
God keeps sending me support in so many ways as long as I keep an open, positive mind & listen. I am truly amazed at how often I read helpful articles & Bible verses & PCR's. I have crossed paths with an abundance of friends who can truly relate to my health issues.
In closing, I would like to quote from "Blessings of Gratitude" by Laurie Leah Levine
One of the spiritual lessons I have learned and teach is that we are more than the obstacles in our life. When we bless something it brings us into a state of love and gratitude which actually changes our frame of mind and perception from a negative state to a more positive one. It literally interrupts the way we see, feel and think about things and allows us to experience it differently. No matter what is happening when you can stop and take a moment to think about all you are grateful for; you open yourself up to connect more deeply with your Divine Spirit and God. Let us give thanks for the people I love and for those who love me.
Let us continue to pray for all those who are suffering and struggling with things perceived to be negative. May God's love, which has been poured into our hearts through the Holy Spirit, continue to be a blessing to us. Through His only Son, our Lord, AMEN.
Rosemary Kelley
Brain Tumor Survivor
Rathke's Cleft Cyst
My tumor was diagnosed by accident. I was in a research study on Alzheimer's disease at the National Institutes of Health in Bethesda, MD. My mother died from the disease and I was a guinea pig for research. They did a complete physical, a spinal tap, and an MRI of the brain. I was in their hospital for 4 days doing tests on me. They told me I was healthy as a horse, but I did have a brain tumor...it looked non-cancerous but it needed attention.
I had to drive back to Ocean City...I could barely catch my breath. How could this be true...I have never been sick in my life. I should never have been in that stupid study...then I wouldn't have known.
Two miles before I got home, I stopped for gas. Who did I see but my plumber, who had a brain tumor taken out (God takes care of us, doesn't He). He really helped me. His tumor has since grown back and he is presently under treatment at the University of MD in Baltimore.
Anyway, my tumor was between the optic chiasm and the pituitary gland. I went to Dr. Weingart and he said we'd just follow it; it may have been in my head for years. I got a second opinion from Dr. Olivi, at Hopkins and he concurred. I stayed with Dr. Olivi and a year later the tumor had changed slightly. I had lost some of my field vision ...I could not detect the loss but the machine did and the MRI was different. He said we could wait 3 months or I could get it out. I opted to get it out. I was in the hospital 5 days. Dr. Olivi has his own private intensive care unit.
My sisters stayed with me the 5 days. I don't remember, but they said I had the best care possible. They were impressed. When I got back to Ocean City, I went to the board walk to sit. One of the nurses at Hopkins spotted me and gave me her phone number. She was in town for a convention and said if I had any questions call her. I didn't remember her...another God moment. Well, when I left Hopkins they told me the tumor was not cancerous and that I should be fine....but I didn't' feel fine weeks later I still felt bad. Turns out my pituitary gland...the body's motor, was not working.
I now see Dr. Snitzer, an endocrinologist and two years later I'm still trying to get my hormone levels right. Still feel rocky some days, but at least I have my vision, that is what they were worried about. 8 weeks after surgery I developed an immune disorder...polymyalgia rheumatical..I felt Like I was going to die....I thought it was related to the brain surgery, but it wasn't. It took about 4 weeks to diagnose. Everyday I felt like I was going to die. I take steroids now and it is better, but still there. I am grateful to be alive.
I haven't been well since surgery...I guess I haven't been my old self. I was able to return to work as a secretary eight (8) weeks after surgery....still very dizzy and rocky. My surgery was August 2005. I'm 55 years old now. I am grateful to be alive although sometimes I still wonder, should I have gotten the surgery? I know that is crazy.
The type of tumor I had is called a rathke's cleft cyst...It is from birth where the brain doesn't close right. My dad says my mother was in a car accident when she was 7 months pregnant with me. Thank God you started this group. We really need it. Anything I can do to help you I will. I have two kids, Amy 23 and Ed 26. God bless you and your family. It is a miracle I saw you on TV. I never watch WBOC at 7:00 pm. Is it odd or is it God. It was definitely God!
Thanks again.
Rosemary
Carl Hansen
Brain Tumor Survivor
Meningioma
Bishopville, MarylandI recently received a note from Rosemary Kelley telling me all about your support group. I am the plumber she mentions in her story. I remember that day very clearly and how upset Rosemary was. I was able to share my tumor history with her and give her assurances that she was not alone. Support groups work wonders, regardless of size.
My first diagnosis was in January of 1987 following a seizure in a local convenience store. That tumor was a Meningioma located behind the right eye (benign). Surgery followed in Salisbury. That tumor was "the size of a plum" according to the surgeon. Prognosis was good even though I left the hospital with a seizure disorder that I still live with today.
In 1993 I started feeling a pressure behind my right eye. The MRI showed that the tumor had recurred, something that I later found out was not unusual. Although I was assured it was still benign, conventional surgery was not an option. The optic nerve was very involved and I was referred to University of Maryland Medical Center for Gamma Knife Radiosurgery. That surgeon was doing some new techniques and later was interviewed on 60 Minutes and found his way on to the cover of Time Magazine. Following a brief overnight stay and lots of steroids I was discharged the next day. I was followed w/ yearly MRIs and after 5 years the tumor was classified as "dead".
During an annual physical exam in January of 2006 my local Dr. decided that I was due for a follow up MRI to check on the "dead" meningioma. The results showed that the tumor had recurred again and this time I was referred to a surgeon @ University Hospital for conventional craniotomy. That was in May with recovery lasting a few months. Dr. Aldrich announced that he was very pleased with the procedure and said that "he got" everything possible. He also told me that the scar tissue made his job difficult and the actual surgery lasted for 9 hours. Upon my last post op appointment with him I was informed that I was no longer a candidate for surgery and that a radiation oncologist would be following me with testing every 3 months. Dr. Kwok informed me of a white spot on the MRI that was either scar tissue or a piece of tumor left behind. Later I was informed that there was no growth and "things were looking good".
My, how things can change. In July of 2007 I could no longer focus with my right eye. My neuro ophthalmologist was sure the tumor was back and pressing on the optic nerve again. He was correct and following another craniotomy I was informed that the meningioma had recurred yet again and was entering the right orbit along and the cavernous sinus. Once again quite a touchy place to be. Not only was my sight involved but the facial nerves were now being compressed and my forehead was beginning to get numb. Treatment was prescribed by Dr. Kwok as 40 individual radiation treatments that he performed at UMMC in Baltimore. I just completed the radiation treatments November. 27, 2007 and my vision is getting better a little at a time.
Phew, that's quite a story. Believe me, I know how to get to Baltimore with both eyes closed. No matter how bad things seemed I always tried to remember: "there but the grace of God go I". Things could always be worse. There are reminders everywhere that help me remember that. God, family, and friends helped me get through it all and continue to help with my recovery.
I looked at the doctor and still listening to my intuition, I said, "No. It is something more." Still not having anything to base it on, she said, "I don't know why I am doing this, but I am ordering him a CT scan." (Thank goodness she was open to my intuition as well!!)
Less than 15 minutes later she came back in with a copy of the scan and showed us the very large tumor in Dan's left frontal lobe. I remember well the silent tears pouring out of my eyes at that point and Dan consoling me saying, "Remember, Lisa...'Let it Be'..."
After surgery, Dan was diagnosed with a Glioblastoma brain tumor. This type of tumor comes with a horrible prognosis because it is Stage 4 when you find it. And the fact that it has tentacles that travel through your brain which makes it harder to control.
Dan seriously has not fretted over anything during his Brain Tumor Journey because he has really taken on the 'Let it Be' mentality. He knew God was and is in control of the entire situation.
Dan was told that according to statistics he would more than likely only live 1 or 2 years. Thankfully now in the spring of 2008 he has lived longer than expected – he has lived a little over 5 years since diagnosis.
We are still dealing with radiation damage to his brain and the effects of all the treatment he has had (which was two surgeries, two different kinds of chemo and a lot of radiation) But we are thankful that Dan is still with us and we try to enjoy each and every day that we are still together. We live our days remembering the mantra of "Let it Be."
We are hoping that with more awareness of the effects that brain tumors have on peoples’ lives that better treatments, or better yet, a cure will be found.
Dan is 49 years old now and obviously wants to live to an old age…and to enjoy seeing our children become adults.
Erik's Journey
Medulloblastoma
Pediatric Cancer
I learned what the word CANCER truly meant when my 17 month old baby was diagnoised with medulloblastoma. Medulloblastoma is cancer of the brain and Erik's had also grown in to his spine. This Journey begins On November 17th 1992 when we heard the words....Your baby has cancer.
There was no time to truly adjust to this as we had to take Erik to Children's Hospital of Philadelphia for surgery the next day. There are no words to fully describe the devestation and numbing effect this all had on my husband and myself. Looking back we do wonder how we pulled it all together and got through all of this. One month later between Erik's first and second chemotherapy treatments we rejoiced in the birth of our last child. Jason a true gift to my family and a true force of encouragement to Erik along the way. He always wanted to keep up with his brother and that truly has been a remarkable part of Erik's success today.
Erik's treatment consisted of surgery to remove the brain tumor followed by 14 months of chemotherapy. Erik finished his treatment of six weeks of radiation to his brain and spine. His treatment was complete on May 17th 1994. Erik has been cancer free ever since. The chemotherapy and radiation used as Erik's treatment saved his life but caused so many long term effects for his furture. The word is future and we life everyday honoring him for all he has been through and all he will go through on this journey. We as Erik's parents thank God every day for allowing us to keep our precious son and to learn from him every day on patience and presistance.
We are grateful for what we have received yet sad for what he has lost in his battle with pediatric cancer.
Norma Zimmerman
www.caringbridge.org/nj/erikz
