This week’s story comes to us from Jordan. Jordan, age 27, is a radiation therapy technician and a caregiver for his mother who was diagnosed with a GBM in 2007. He describes his experience below.

Please tell us a little about your life at the time your loved one was diagnosed.
I had just graduated from radiologic technology school and was preparing to attend radiation therapy school at MD Anderson Cancer Center. A couple of days before receiving my acceptance letter, we found my mother’s brain tumor at the clinic I was working at.

How has life changed since then?
The only thing that has changed is that we all get nervous every three months around the time of mom's MRI.

What is one piece of advice you would have for a new caregiver?
Just simply being there to listen is one of the greatest things you can provide the people coping with this disease. They are often bombarded by people telling them treatment options, statistics, and appointments. Often all they want is someone to listen to them.

What has been the most rewarding or challenging part of caregiving for you?
Hearing the simple words, “Thanks, you really helped me”.

What is the most helpful thing someone has said or done for you?
Once, a family member of a patient called and asked end of life questions and coping mechanisms. A few days later, they called back and told me their loved one had passed away. The family member then proceeded to tell me that because of my explanations they knew they would be able to better cope with the situation.

Do you have any suggestions for ways caregivers can care for themselves?
Stay educated and be a great listener.

Describe your experience/journey as a caregiver in three words:
Rewarding, humbling, unique.

As a long-distance caregiver for your mom, what do you do to stay connected? In what ways do you find it challenging?
The long distance caregiver relationship for me is indeed long distance. I live in North Carolina and my mother lives in Texas. The distance between us is about 17 hours or 1,050 miles.

The most important aspect of staying connected is frequent communication. Not only is this therapeutic and comforting in regards to my mother knowing I care, but it also allows me to assess her current health physically, mentally, and emotionally. The communication on a regular basis allows me to see any discrepancies in behavior or developing trends. Our communication method is mainly by telephone. We also use email and Facebook. The telephone conversations allow me to hear speech issues or patterns like memory loss, word recognition, or pronunciation.

Our communication by email and Facebook gives me the opportunity to see things such as spelling issues and word selection. I hope to add the use of Skype (video chat) for both of us later this year so we can talk and see each other. This would allow me to be present at her doctor’s appointments with the use of the iPhone and the Skype application. The most difficult element of being a long-distance caregiver for my mother is the lack of immediate physical presence. I am unable to attend most of her appointments. Many times she is overwhelmed at doctor’s appointments by all of the information and becomes stressed. I feel that much of this stress could be alleviated by me being with her. Though I am only a phone call away, physical presence is a very important dimension in caregiving. It is also challenging because of the statistics of a GBM. Though my mother has defied the odds thus far I have been unable to spend as much time with her due to distance. This makes the time that I spend with her even more valuable. Thanks to the internet, we are able to see each other by sending pictures back and forth.

Thank you for the opportunity to share, I am proud to be a part of the NBTS.

Blog repost from 6/22/10

Paul, age 51, is a survivor diagnosed in 2004 with a Meningioma. He describes his experience below.

Please tell us a little about what you were doing when you were first diagnosed or had symptoms.
I was at work and lost vision in one of my eyes. After several weeks of tests and a recurrence of vision loss I had an MRI and the tumor was diagnosed.

What is one piece of advice you would have for someone who is newly diagnosed?
Trust your own perceptions and your own sense of what is happening to you. Trust how you feel both prior to treatment and subsequent to treatment. Each tumor is individual, each experience is individual, and each recovery is individual. Patience and support are key.

What have you learned from this experience?
I have learned that the experience of having a brain tumor is greater than the sum of its parts: diagnosis, anticipation, surgery, recovery, family, friends, doctors, work. My experience has been that having had a brain tumor has had an impact on every major part of my life.

What is the most helpful thing someone has said or done for you?
The most helpful thing has been to learn that others have experienced the same things. You may share some of the same changes, concerns, frustrations, embarrassment, anger, and confusion.

If you use a creative outlet or form of expression?
I am a graphic designer and have experienced both a greater sense of creativity, humor, and appreciation of music subsequent to having a brain tumor and surgery.

Describe your experience/journey in three words:
Fear, denial, acceptance

Did you name your tumor?
Pierre

If you could pass legislation to help the brain tumor community, what would it be?
Guaranteed health insurance for pre-surgical consultation, surgery, and recovery. This would include physical therapy and neuropsychological testing pre and post surgery. In addition, I’d want insurance coverage for cognitive rehab.

If you could have your own personal theme song, what would it be?
Oh, music is too important to me to consolidate into a personal theme song. I am so persuaded by music so much more since my surgery. I can't imagine picking one song or type of music to identity with. My experience with music has a greater importance in my life. It has been a wonderful and surprising change since my surgery. Music was always important to me, but since my surgery it feels as if my experience with music has become almost cellular.

Since your diagnosis, did you modify what you eat? Is nutrition important to you? If so, what changes have you made and why?
I think there is such a dynamic between health - healthy preparation for surgery and recovery - and diet and exercise.  I was an ardent exerciser for a long time prior to my surgery and was in very good shape - watching what I ate and doing triathlons.  I think this helped my recovery but I was convinced prior to my surgery that I’d be back doing triathlons in just a few months. That proved not to be the case and caused me to feel depressed.  I think my expectations were too high and I needed to adjust to “the new normal.”  Still, I think both nutrition and exercise are hugely important before surgery and especially after. I was very fit - I went on a very long run 2 days before my surgery and it helped calm me down - and after surgery I tried as soon as I was able to get back to whatever approximation of my old routine I could - eating well, fresh food, etc., but also trying to accomplish whatever exercise I could as soon as I could. Even walking around the block which felt difficult, was good for me. I can’t stress the importance of exercise and diet enough - both from a physiological standpoint, but from a psychological one as well.

This week’s story comes to us from Eric, a writer and founder of mAss Kickers Foundation. Eric, age 34, is a survivor diagnosed in 2005 with a meningioma. He blogs regularly and describes his experience below.

Please tell us a little about what you were doing when you were first diagnosed or had symptoms.
I was working as a newbie physical therapist in San Diego in 2005. I had just graduated from physical therapy school with my Doctor of Physical Therapy (DPT) degree. I was getting ready for my new career in an exciting new city. I started getting dizziness, headaches, and nausea. When I started getting facial numbness (frequently biting my tongue and cheek) I knew something was up.

What is one piece of advice you would have for someone who is newly diagnosed?
A brain tumor is not necessarily a death sentence. Whether it is malignant or non-malignant it still a pretty big deal! You have to be your own advocate! Don’t let anyone tell you, “Oh it’s benign… you’ll be fine.” By the way, I hate the word benign. Non-malignant is a more appropriate term when it comes to brain tumors.

What have you learned from this experience?
I am still learning patience, but I have also learned that I am capable of many things I never would have imagined. I wrote and published a book, traveled the country three times on national book tours, and have started a nonprofit organization (www.mAssKickers.org) geared towards the newly diagnosed tumor/cancer patient AND their loved ones.

What is the most helpful thing someone has said or done for you?
Walking is a big issue for me right now because I have impaired balance and coordination. I was doing triathalons and long distance races before I had surgery. I really missed the athletic environment. With the help of my friends, I have completed five 5K walks.

If you use a creative outlet or form of expression?
Blogging/creating videos.

Describe your experience/journey in three words:
Eye-opening, challenging, barrier-busting

Did you name your tumor?
I’m a big football fan. It was named “Amani Toomer” like the former University of Michigan and New York Giant wide receiver. He was at one point on one of my fantasy football teams. That team kept losing!

If you could have your own personal theme song, what would it be?
If I had to choose one song it would be "Everlong" by the Foo Fighters.

Also read Eric's story on Rehabilitation - Goal Setting and Patience on our website.

Reposted from 12/14/2010

This week’s story comes to us from Phyllis, a member of the NBTS Patient Support Network. Phyllis, age 50, is a survivor diagnosed in 2005 with an acoustic neuroma. She describes her experience below.

Please tell us a little about what you were doing when you were first diagnosed or had symptoms.
My acoustic neuroma was found completely by accident. It had been missed on earlier head MRI. The MRI that found the acoustic neuroma was actually on the hunt for constrictive vascular disorder.

What is one piece of advice you would have for someone who is newly diagnosed?
Research ALL options. Today’s medical research and technology is constantly being updated so stay on top of your research. Also, know that there are so many others here to support you along the "new journey".

What have you learned from this experience?
Support. The support of those that walk in my shoes has been overwhelming. It's great to know that when others may walk away from our lives, it truly does "take one to know one" when it comes to support of others in the same shoes.

What is the most helpful thing someone has said or done for you?
They listened to me when I needed a shoulder or ear. They reminded me that it’s okay to cry as I've earned the right to cry and no one can try to take away. The range of emotions that come with the brain tumor journey are real.

Do you use a creative outlet or form of expression?
I am a moderator on the Acoustic Neuroma Association discussion forum. There, I am able to be myself and joke with others. Laughter truly is the best medicine in a brain tumor journey.
Describe your experience/journey in three words.
Fearful
Hopeful
Success

Did you name your tumor?
The Brain Booger :)

If you could have your own personal theme song, what would it be?
"My Way" by Frank Sinatra. When I was diagnosed I did the treatment option that my family was against. I tried to explain that my research brought me to what I felt would be best for my particular situation. Now, 4 1/2 years later, they agree I was right. The tumor is a “done deal” (noted by the treating doctors) and life is moving on. I did it, "My Way".

In your journey with a brain tumor, how have you coped with the ups and downs? What do you do to keep your mental health clear? When you do get down, what works best for you?
The ups and downs can be overwhelming at times. I try to keep focus straight ahead vs. looking down (as when I walk). Being able to rely on loved ones constantly reminds me that I can always count on them, even during “not so good” days. This helps to keep me even-keeled. I try to do my best to do things that will help keep me even keeled, including relaxing techniques or even watching mindless TV, or doing puzzles such as Sudoko, etc. But most of all I sit back, and remind myself that I am mentally strong. Even when I have days that try their best to throw me off, I try with the help of my support system to keep myself focused on the good in my life.

Reposted from 7/28/11

This week’s story comes to us from Rick, a member of the NBTS Patient Support Network. Rick, age 58, is a survivor diagnosed in 2005 with a glioblastoma. He describes his experience below.

Where or what were you doing when you first were diagnosed or had symptoms?
My very first symptoms occurred while I was surfing the internet one evening back the fall of 2005. I saw “floaters” in my minds’ eye that resembled the MS Logo just to the left of the Start button on a PC. My first diagnosis occurred in the hospital after 24 hours of CT scans and MRI’s. 

What is one piece of advice you would have for someone who is newly diagnosed?
Don’t give up for a second. Never take a doctor’s opinion as gospel. They gave me 10-14 months to live but here I am 6+ years later. Do your own research by reading newspapers, magazines and, especially, the internet. ALWAYS ask questions. There is no cure for any cancer but a lot of them, including brain, can be held at bay for longer periods of time.

What have you learned from this experience?
Hold your head up straight even in the face of danger. Positive thinking and meditation are great exercises for relaxation and handling most any type of treatment or consequence. Be strong and when you grow weary, take a break. Then after you recharge your “batteries” come back again stronger than ever!

What is the most helpful thing someone has said or done for you?
It’s never as low as you think or high as you feel. Think positive thoughts. Stay on the path.

Describe your experience/journey in three words:
You WILL win!

Did you name your tumor? If yes, what is it?
Uncle Gleo!

If you could have your own personal theme song, what would it be?
"Roll With The Changes" – REO Speedwagon

This week’s story comes to us from Lauren, a member of the NBTS Patient Support Network. Lauren, age 26, is a survivor diagnosed in 1995 with juvenile pilocytic astrocytoma (JPA). She describes her experience below.

Where were you or what were you doing when you when you first diagnosed or had symptoms?
My symptoms started in November of 1994. They were most apparent in school or on the soccer field. Also, my home life was impacted because I lost all of my energy and became very clumsy. My symptoms persisted for about five months until I was correctly diagnosed in March of 1995.

What is one piece of advice you would have for someone who is newly diagnosed?
Sounds cliché but you have to maintain a positive outlook and perspective. Also, surround yourself with good people; who are supportive, make you smile, and are there for you.

What have you learned from this experience?
I completely attribute much of who I am today to my experience. It is hard to know what I would have been like had I not had a brain tumor but I would like to think that I have an appreciation for every day and a perspective on life that were shaped by my experience.

What is the most helpful thing someone has said or done for you?
The greatest piece of advice I ever received was to always laugh and smile. Also, no matter what kind of advice, guidance, and support you gain from others, at the end of the day, I believe that much of what it takes to “get through it” has to come from within.

Describe your experience/journey in three words.
Tedious
Humbling
Impactful

If you could have your own personal theme song, what would it be?
That is tough; I love music. I would have to say something up-beat with great lyrics.

Today’s featured brain tumor survivor story comes from Zazel-Chavah. Zazel is a professional dancer, actress, model, and brain tumor survivor. The aftermath of her surgery left her partially paralyzed, but this didn’t stop her creative spirit. With all the strength she could muster, Zazel fought her physical therapist to push her beyond all expectations.

Now Zazel has turned her situation into a gift by teaching dance to people with disabilities and brain injuries -- showing them that dance can be a healing art form. In 2010, Zazel was awarded VSA Teaching Artist Fellowship which identifies, engages, and supports teaching artists with disabilities in the visual and performing arts. Zazel says everyone can have the power of "Turning a Setback into a Comeback!"

January 2011 marks Zazel's 10 year anniversary since her brain tumor diagnosis.

To read more about Zazel and listen to an interview with her, visit our Story Corner page. Scroll down the page to access the audio recording.

Did you know that the National Brain Tumor Society has a Patient and Caregiver Peer Support Network? This network is composed of survivors and caregivers that understand what living with a brain tumor is like and are available by phone or email to offer support to others in the brain tumor community. If you are interested in being a volunteer, please email info@braintumor.org and request an application. Our next application review is taking place October 1, 2011.

Here are some stories from the last few weeks! Thank you to all of our volunteers.

Corey's Story: Talk to someone who's been through it
Corey, age 26, is a survivor diagnosed in 2007 with an ependymoma. She describes her experience below. You can hear an interview with Corey in our Story Corner, please be sure to check it out!

Jillian's Story: Make sure you have a strong support system
Jillian, age 29, was a caregiver for her mother who was diagnosed with a pituitary adenoma in 2009.

Karen's Story: Research Your Options
Karen, age 38, is a survivor diagnosed in 2005 with a benign meningioma.

Phyllis's Story: Laughter is the Best Medicine
Phyllis, age 50, is a survivor diagnosed in 2005 with an acoustic neuroma

Also, if you are interested in sharing a photo and your personal story, NBTS is seeking submissions for our 2011 Summit in Philadelphia. Read the submission guidelines here. You do not have to attend the Summit to have your story featured in our Welcome Reception and Photo Gallery.
 

Today we're cross-posting Ed's story from our Story Corner site. If you'd like to post your story online, visit our Submit Your Story page.

In 2002 my partner and I were working in the heat at our power plant in the mist of summer in Arizona. All of a sudden I felt a pressure building up in the right side of my head. I started seeing red, green, and blue sparkling stars blinking and going around in circles. Everyone was thinking I was having a stroke. They took me to our trailer, which was our on the job office. It was air conditioned and I spent about an hour and a half before the symptoms went away. The next day it happened again and the same thing was done. I went home made a doctors appointment and by the time I got to see the doctor I was having 6-8 seizures a day. Well, he told me that he was going to get some test scheduled but in the meantime, if it happened again, to get my self to the emergency room. When I got home I had another one, and my wife took me to ER.

I spent 7 days doing all kinds of tests before they told me they were sending me to another hospital. They said they didn’t know if I had a stroke or brain cancer. Well, the next day they did a biopsy and found the tumor. I was diagnosed with an anaplastic astrocytoma, grade III. They told me I had 6 months to a year to live. I got started on my radiation treatment as well as chemotherapy. I was taking temodar for chemo. Well after a couple of weeks of radiation I started to lose my hair around my left ear and I told my wife that since my life looked short I was going to have some fun with it. I told her I was going to get a Mohawk for fun. I went to my salon to get the Mohawk. The girls there knew I was diagnosed with cancer. The stylist asked if I wanted to have some more fun. When I left there I had 6 different colors on my head. My wife loved it and so did I. From then on I have done this every year for our Relay for Life as well as my anniversary of battling cancer to which I’ve had fun doing. I enjoy reaching out to other survivors.

My treatments were 7 weeks of radiation and about 2 years of chemo. Side effects did not show up until about one year ago. Where my radiation was given, my left eyelid shuts sometimes. My sodium level dropped to where I spent four days fighting it. My left ear is also waxing up and I’m losing hearing.

I have learned to keep a positive attitude and try to make the best of things. I feel the Mohawk has really kept me going because it’s fun. It’s also fun when people ask about it. The first year was a tough one, as some people were pretty rude at times. With that I learned not to judge people by their looks, but how they talk and represent themselves while talking to you.  I like to get the word out to survivors that some how there is some kind of way to fight!

After a 9 year battle, my recent blood work shows no signs of cancer! I have to keep up with my medications and follow up visits with my doctor. Do not give up hope. God bless and keep a positive attitude.

This week’s story comes to us from Corey, a member of the NBTS Patient Support Network. Corey, age 26, is a survivor diagnosed in 2007 with an ependymoma. She describes her experience below. You can hear an interview with Corey in our Story Corner, please be sure to check it out!

Where were you or what were you doing when you when you first diagnosed or had symptoms?
I was in a hit and run car accident, and I hit my head on the driver's side window when the other driver hit me and took off. My mother took me to the emergency room, where they did a CAT scan for internal bleeding. They didn’t find blood, but instead found a tumor. I had graduated from college five months earlier and was trying to figure out what to do with my life, but after the diagnosis and impending surgery, my life came to a standstill.

What is one piece of advice you would have for someone who is newly diagnosed?
Talk to someone who's been through it. I didn't know anyone at the time and I felt totally lost and uncertain. Though I was surrounded by people who cared, I felt very alone because no one understood what I was going through.

What have you learned from this experience?
Things happen for a reason. I had no clue I had a tumor - no symptoms, nothing - until that accident; then everything changed. But I'm happy with where I am now; while the path was rocky, I ended up in a good place.

What is the most helpful thing someone has said or done for you?
When I was really sad after surgery and in complete denial that I had depression, my mom called my therapist, who contacted a psychiatrist, and between the three of them I slowly got back to normal. That was extremely helpful and I don't know where I'd be if that hadn't happened.

Describe your experience/journey in three words.
Strenuous
Educational
Eye-opening

Did you name your tumor? If yes, what is it?
Nicole (because it was the size of a nickel)

How has being a young adult survivor been helpful or challenging?
I’ve found it difficult to meet and connect with brain tumor survivors, but it’s even more difficult to connect with young adult survivors; that’s why I appreciate the community programs created by NBTS and the increased use of social media. It was challenging when I first told my friends about the tumor because the widespread prevalence of brain tumors (especially pediatric/young adult ones) are not well known—they’re a lot more common than people think. However, my experience gave me the opportunity to educate others and share my experiences.

If you could have your own personal theme song, what would it be?
It's always been "Every Little Thing She Does is Magic" by the Police; it's a nice reminder that I am still valuable regardless of my tumor status.

This week’s story comes to us from Phyllis, a member of the NBTS Patient Support Network. Phyllis, age 50, is a survivor diagnosed in 2005 with an acoustic neuroma. She describes her experience below.

Please tell us a little about what you were doing when you were first diagnosed or had symptoms.
My acoustic neuroma was found completely by accident. It had been missed on earlier head MRI. The MRI that found the acoustic neuroma was actually on the hunt for constrictive vascular disorder.

What is one piece of advice you would have for someone who is newly diagnosed?
Research ALL options. Today’s medical research and technology is constantly being updated so stay on top of your research. Also, know that there are so many others here to support you along the "new journey".

What have you learned from this experience?
Support. The support of those that walk in my shoes has been overwhelming. It's great to know that when others may walk away from our lives, it truly does "take one to know one" when it comes to support of others in the same shoes.

What is the most helpful thing someone has said or done for you?
They listened to me when I needed a shoulder or ear. They reminded me that it’s okay to cry as I've earned the right to cry and no one can try to take away. The range of emotions that come with the brain tumor journey are real.

Do you use a creative outlet or form of expression?
I am a moderator on the Acoustic Neuroma Association discussion forum. There, I am able to be myself and joke with others. Laughter truly is the best medicine in a brain tumor journey.

Describe your experience/journey in three words.
Fearful
Hopeful
Success

Did you name your tumor?
The Brain Booger :)

If you could have your own personal theme song, what would it be?
"My Way" by Frank Sinatra. When I was diagnosed I did the treatment option that my family was against. I tried to explain that my research brought me to what I felt would be best for my particular situation. Now, 4 1/2 years later, they agree I was right. The tumor is a “done deal” (noted by the treating doctors) and life is moving on. I did it, "My Way".

In your journey with a brain tumor, how have you coped with the ups and downs? What do you do to keep your mental health clear? When you do get down, what works best for you?
The ups and downs can be overwhelming at times. I try to keep focus straight ahead vs. looking down (as when I walk). Being able to rely on loved ones constantly reminds me that I can always count on them, even during “not so good” days. This helps to keep me even-keeled. I try to do my best to do things that will help keep me even keeled, including relaxing techniques or even watching mindless TV, or doing puzzles such as Sudoko, etc. But most of all I sit back, and remind myself that I am mentally strong. Even when I have days that try their best to throw me off, I try with the help of my support system to keep myself focused on the good in my life.

This week’s story comes to us from Jillian, a member of the NBTS Caregiver Support Network. Jillian, age 29, was a caregiver for her mother who was diagnosed with a pituitary adenoma in 2009. She describes her experience below.

Please tell us a little about your life at the time your loved one was diagnosed.
I was working in the lab at Children's Memorial Hospital. I remember getting a call that my mom was taken to the ER because she "felt funny" and had a really high blood pressure. Worried she was having a heart attack, my sister and I rushed to the hospital. After about 10 hours in the ER, my mom started to feel better and the doctor diagnosed her with high blood pressure. Before he released her, he ordered a CT scan to rule out any brain bleed. He, and we, were shocked to learn that the CT scan revealed a mass on her pituitary. She was diagnosed with a pituitary macroadenoma and had surgery a week later. I took about 2 weeks off of work to spend at the hospital with her before and after her surgery. It turned out that her original symptoms were unrelated to the tumor and she was really fortunate that the tumor was caught before it damaged her eyesight.

How has life changed since then?
With her surgery and recovery, everything went basically back to normal. Her tumor was non-secreting, therefore her hormone levels were not effected, and she never really had any tumor symptoms. She gets MRI's every 6 months and there is no trace of the tumor.

What is one piece of advice you would have for a new caregiver?
Do your research and find a fantastic doctor, especially when it comes to surgery. My mother had very limited insurance coverage, however, we made a bunch of phone calls and found a notable pediatric brain surgeon in her plan that also did surgeries on adult pituitary tumors.

What has been the most rewarding or challenging part of caregiving for you?
The most challenging part was watching my mom recover from surgery. Since pituitary tumors are operated on through the nasal cavity, her face was extremely swollen. She also had to have her nose filled with packing material. I can only imagine how uncomfortable she was.

Do you have any suggestions for ways caregivers can care for themselves?
Make sure you have a strong support system in place. Utilize friends, family, support groups, and respite caregivers to ensure that you can get some time to recharge. Also, consider speaking with a counselor or social worker that can provide you with unbiased support and help you build up the emotional core you need to handle this tough job. 

There are a lot of valuable resources out there, including the NBTS and their website. Use them! 

Describe your experience/journey as a caregiver in three words.
Whirlwind
Stressful
Emotional

Is there anything else you'd like to share?
Six years before my mother's diagnosis, my father passed away from a brain tumor. Needless to say, I have more than enough experience caregiving for brain tumor patients. To all those dealing with a brain tumor as a patient or a caregiver...ask a lot of questions, use all your resources, and most of all....hang in there.

This week’s story comes to us from Karen, a member of the NBTS Patient Support Network. Karen, age 38, is a survivor diagnosed in 2005 with a benign meningioma. She describes her experience below.

Please tell us a little about what you were doing when you were first diagnosed or had symptoms.
I worked as a dental hygienist and was having pain in the right side of my neck. I thought it was a pinched nerve and went to the doctor right away and that was when they found the meningioma.

What is one piece of advice you would have for someone who is newly diagnosed?
Research and weigh all of your options (including finding the right neurosurgeon). Luckily, I found my neurosurgeon on the first try.

What have you learned from this experience?
That you have to be your own advocate at times.

What is the most helpful thing someone has said or done for you?
My friends have been there for me--in the good times and the bad times.

What do you hope for?
I hope that one day there is a cure for all brain tumors benign or malignant, so that we do not have to suffer anymore.

If you use a creative outlet or form of expression, what is it and how has it affected you?
I have written my journey down, hopefully into a book one day.

Did you name your tumor?
No never named it!!!!

If you could pass legislation to help the brain tumor community, what would it be?
To have MRI's or CT scans as a routine part of a health exam, so we can catch tumors before they grow into the big monsters they can be.

If you could have your own personal theme song, what would it be?
"Bring the Rain" by Mercy Me and "Emotions" by Matthew West

How do you keep yourself up-to-date with meningioma research and education?
I stay updated via websites and my own neurosurgeon. I ask him if there have been any new studies on these types of tumors. There are so many unanswered questions to brain tumors and I not only want to learn about meningioma, but also other tumors types because all brain tumors have some effect whether they are cancerous or not.  I hope one day we are to find a cure for all types of brain tumors!

NBTS Patient and Caregiver Support Network provides an opportunity for those who are newly diagnosed, long-term survivors, or caregivers to connect with other survivors and caregivers over the phone or by email. The Support Network members are volunteers who would offer their support and experience to help others.

If you are a survivor or caregiver interested in volunteering, please email NBTS Patient Services, or call 800.934.2873. Our volunteers often get featured in the blog. In case you missed our recent stories, here is your chance to read up!

Richard’s Story - Don’t Quit Before the Miracle Happens
Richard, age 45, is a survivor diagnosed in 2002 with a glioblastoma.

Advocacy: One Person at a Time
Lanette was diagnosed with an anaplastic oligodendroglioma in 1998. She is the mother of two and resides in Arizona. She never returned to work in the banking industry after her tumor diagnosis, and started the Gray Matters Foundation in 2007.

Tara's Story: Transformed from Selfish to Selfless
Tara, age 18, is a caregiver for her mother who was diagnosed with a GBM in 2007.

My father, Phil Hahn
This week’s story comes to us from Lori. Lori, age 41, was a caregiver for her father, Phil Hahn, who was diagnosed with a GBM in October 2010.

This week’s story comes to us from Sarah, a member of the NBTS Caregiver Support Network. Sarah, age 30, was the primary caregiver for her brother who was diagnosed with a glioblastoma (GBM) in 2008. She describes her experience below.

Please tell us a little about your life at the time your loved one was diagnosed.
The best way to describe the way I was living before cancer is “blindly.”  I went to work every day, went to the gym, met up with friends – my first priority being happy hour and where I could find the cheapest drink in NYC. My brother was in law school, and our Sunday nights were spent catching up over dinner in his neighborhood (he’d never come to mine!) before we started the same routine all over again the next week.

How has life changed since then?
There is not one single aspect of my life that hasn’t changed since the very day my brother was diagnosed with brain cancer. My priorities have shifted completely; my life carried and continues to carry more meaning now than it ever did in all the years before cancer. In caring for my brother, I realized how unbelievably important our time together was, and began to live entirely for the moment. As anyone touched by brain cancer knows, you cannot predict even one minute into the future, so staying completely present helped me to start to relax and enjoy the little time we had, which was a really hard lesson to learn when battling such a challenging disease. 

What is one piece of advice you would have for a new caregiver?
Caregivers are often pulled in so many different directions that it can be impossible to slow down and focus on the moment. The most valuable part of my experience as a caregiver was the time I spent with my brother – whether we were having dinner, driving to radiation treatments, or just sitting in the living room together. At the end of the day, the simple moments we had were more important than anything else, and when I learned the most about my brother -- his strength, his fears, and how to be there for him though it all. As a caregiver, I think the best thing you can do is to slow down, take more time, listen more, talk less, and celebrate the small things – those are the moments with the most meaning.

What has been the most rewarding or challenging part of caregiving for you?
Caregiving for someone you love is one of the most challenging experiences – it can be exhausting, consuming and painful at times.  But looking back, the incredibly difficult times were all part of the journey.  I found balancing my work, my friendships, my family and my personal life with being 100% dedicated to my brother the hardest part of the experience.  The rewarding part was worth it all – the time I got to spend with my brother that we wouldn’t have otherwise had if cancer never entered our lives.

What is the most helpful thing someone has done for you?
Listened. It is a simple thing but not everyone is able to do it. The people in my life that have been there just to listen to my story, or what my day was like, or what the past hour was like, those are the people that have had the most impact in my life.

Do you have any suggestions for ways caregivers can care for themselves?
One of the most commonly asked questions I got as a caregiver was “How are you taking are of yourself?”  The question always bothered me because when in the middle of this all-encompassing battle, the last thing I wanted to concentrate on was myself. But I realized that taking even 10 minutes to do something that was a release for me – taking a yoga class, talking to a friend on the phone, writing in a journal – helped me to focus on the next task without getting burned out. 

Describe your experience/journey as a caregiver in three words.
Hopeful, meaningful, transformational

If you had your own personal theme song what would it be?
Throughout the months my brother was sick, I listened to David Bailey’s music – he was a brain cancer survivor for more than 14 years and his music is inspirational and powerful. I think the song “Keep on Walking” is my favorite – it’s about the battle we all face with this disease and how to keep moving through it, because there’s no way around it.

Is there anything else you'd like to share?
Brain cancer is a really difficult disease.  If you’re a caregiver for someone you love that has a brain tumor, you face challenges you never expected to face and play roles you never thought you’d play. I think the most important thing to remember is to stop once in a while and realize how important this experience is and connect with your loved one in new ways. You will never regret it and as difficult as a cancer diagnosis is, it doesn’t have to define you. Embrace each moment!