Search Results for 'meningioma'


Blog and PT shop talk27 Oct 2015 09:04 am

This was the first article I published in Advance Magazine for Physical Therapists… it led to the crazy idea of writing a book and publishing other articles!  It has been quite an adventure…

Reversal: When Therapists Become Patients

dscn0004.jpg
We see patients every day. It’s real easy to forget they are people too, not just another “total knee” or “laminectomy”. Ever patient has a story. When taking a history how well do you really get to know your patients? I always used to wonder what they were going through, what things were like for them. I came to the seemingly obvious realization that a diagnosis affects people more than we know outside of the controlled therapy sessions. There are so many other factors involved in Rehab other than just mobility. I had to live through my “discovery”.

I graduated from Physical Therapy school at the University of Michigan- Flint in December 2003. I moved to San Diego, California a month after graduation in the hopes of finding a great job, an active lifestyle, and a nice girl. I found almost everything I was looking for in San Diego, but then I got some stunning news last September. I was diagnosed with a golf ball sized brain meningioma on my Tentoral membrane. The tumor was applying pressure to my brain stem (specifically the Pons) and my cerebellum. I was having severe symptoms of dizziness and nausea before I got things checked out. I had just started doing more swimming and surfing.   At first I thought I had an ear infection or maybe a Vestibular Problem, nothing too serious. Then I started getting headaches and nausea. That’s when I knew something wasn’t right.

According to the American Cancer Society 2% of all cancer related deaths were attributed to brain cancer. Males have a 0.66% lifetime risk of being diagnosed with a primary malignant brain tumor and a 0.50% chance of dying from a brain tumor. (1)   But men are at risk none the less, I never thought it could happen to me. It did. Meningiomas are the most common type of primary brain tumors at 27.4%.  (2) Meningiomas affect mainly elderly African-American women.(3) The Glioma family of tumors account for 44.4% of all tumors, with Glioblastoma being the most common type of Glioma at 51.9% and Astrocytoma representing 21.6% of all Gliomas.(2)

I’ve never been sick before. I always thought my first surgery was going to be orthopedic, not neuro and not so soon. I figured I’d have surgery at the hospital where I used to work because I knew the staff pretty well and I was familiar with how things were run there.  After much deliberation, I also chose to do my rehab where I used to work because I didn’t want to be alone and I knew I would be in good hands. When I first moved to San Diego I was torn between working in a hospital vs. working in a private clinic. I chose the hospital. I’m glad I made that decision because not only did I meet a lot of new people but it also opened the door for many other work related opportunities.

Knowing the staff where you have surgery has its perks and draw backs. (See side bar) I got the best treatment, but I also had a lot of visitors. I liked the friendly atmosphere, but it left me with very little privacy. The only awkward moments I had were taking showers with the assistance of the CNAs. It took me a few weeks to get used to that. I’m a pretty shy guy, and then I figured they see naked people all the time. At least none of my friends / old co-workers would see me naked!

Pros and Cons of going through rehab where you work (could be a side bar)

Pros

  • You’ll get the best care.
  • Your co-workers will be great advocates for you
  • Lots of support.
  • You’ll be familiar with protocols/policies and procedures.

Cons

  • So many visitors, very little privacy.
  • Your co-workers will see you at your worst.
  • It’s like you’re still going to work.
  • Different perceived roles with your co-workers.

 

The hardest thing for me to deal with in rehab was knowing what needed to be done to progress, but not being able to do it. I was discharged in a wheelchair to my apartment with my dad in early December. My dad had just recently retired so I would have someone with me at all times. He spent over 6 months away from home in Michigan to stay with me in San Diego. This in itself was a huge adjustment. I’m used to being on my own and doing things by myself.

I really think it was harder on my family than it was on me because I knew what to look for in terms of progress. I had to explain to my dad every day that things were going well, specifically with weight shifting and balance. He would only look at the big functional goals like walking distance and speed. It was tough trying to tell both my parents to stay patient because I shared their impatience.   They were so used to cheering me on as an athlete that I think it was a difficult adjustment for them to make.

I turned to my old co-workers for support once I started outpatient therapy. Actually they were the ones that took me out to happy hours and would help me escape my overprotective parents. We usually kept things professional during my therapy sessions. Sure, we would joke around, but there was mutual respect on both sides. What I really appreciated was my therapist asking me what I wanted to work on at the beginning of each session, while still setting certain objectives each session. I also appreciated the feedback on the identification of my impairments so I could attempt to correct them. Sometimes we get so used to telling patients what to do, we forget to tell them why we are doing certain activities. Setting my own goals really kept me going. The goals I set for myself helped me to focus on what I needed to do.

Things to remember when working with patients 

  1. Check-in periodically – Always ask their opinion on how they feel things are going
  2. Involve them in the treatment planning
  3. Help them set attainable functional goals
  4. Explain why they are doing certain activities
  5. Listen to their concerns. Don’t forget they spend more time with you than with their docs.
  6. Remind them that maximum progress is made outside of the therapy sessions through their HEP.

People ask me how I dealt with everything. My response to them is every day was different with new challenges. I know this is a cliché, but I had to take it one day at a time. I would wake up every morning and certain things would be a little easier. Each day brought a different challenge. Treating and beating each new challenge individually made the days go by faster. I never let go of the belief that I’m still a regular guy. It just takes me a little longer to do common everyday activities. I literally grew to hate the wheelchair and the walker so I would force myself to progress. I’m also still a pretty immature guy so I took the time to laugh at myself and all the difficult situations I put myself in.

I can’t even imagine going through rehab as an elderly adult. I have so much respect for them. The physical and psychological demands were enormous on me, an active young man. Their stage in life would obviously bring about different challenges/goals.  The biggest realization I made was that when patients go home, their impairments go with them. Unlike us, they get no vacation or breaks from the impairments. We get to go home at the end of the day and leave things at work. Putting on my shoes as a patient has definitely opened my eyes as a therapist.

Sources

  1. Ries LAG, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, Edwards BK (eds.) Seer Cancer Statistics Review, 1973-1999: National Cancer Institute, Bethesda, MD, 2002.
  2. Report, Primary Brain Tumors in the United States, 1992-1997.
  3. http://www.emedicine.com/NEURO/topic209.htm
Blog and mAss Kickers news18 Sep 2015 07:51 pm

September has always been a month full of excitement… the start of school, the start of football season, the baseball pennant race starts to heat up, cool (but not cold) weather, cider mills… so much to get excited about!  This year I started September on a plane to Brussels.  Check out the pictures and videos from our trip.  Blogs should be coming soon from participants!  Check mAssKickers.org soon.  It was an EPIC trip!  mAss Kickers Foundation took 4 post oncology treatment thrivers to Belgium and made some great connections in Europe.  We will definitely be returning to Europe!

2015 Celebration of Life flier_edited-3To close out September, I’ll be traveling to the University of North Carolina at Chapel Hill to look at a PhD program.  Just exploring my options, but I’m always up for a new challenge.  I’m lecturing at the PT school, then visiting their PhD program.  I’m very excited to visit Dr. Claudo Battaglini’s lab and the “Get REAL & HEEL” Exercise/Physical Activity Program for Oncology patients.  I’m excited because I’ve never really hung out in the Southern East Coast and I have family and friends around UNC!  Should be an exiting end of the month!  October is is going to be a very packed month as well!  We have our Celebration of Life event on October 16, where survivors formally thank the people who were there for them with toasts!  I’ll be giving the final toast of the night and celebrating my 10 years of meningioma brain tumor survivorship, so hopefully many of the people who were there for me can make it so I can formally thank them!  SUPPORT US HERE!

14 Feb 2007 06:45 pm

Sunday, April 6 2008 Carlsbad 5000 5K walk

Sunday, April 20 2008 Guest appearance as Minority survivor panelist on Vital Options – The Group Room Radio Show

Friday, May 9 2008 Sharp Healthcare Eagle Victories of Spirit Award Celebration

Saturday, September 6 2008 – Boston, MA Meningioma Day Speaker

Sunday, September 7 2008 – Boston University Book event details TBA

Sunday, October 5 2008 2-5PM Michigan Union, Kunzel room Book event sponsored by Lambda Phi Epsilon, Michigan Union bookstore

Saturday, October 25 2008 TUMORS SUCK DAY I’ll think of something REAL good hee hee ;D

Now Courting requests for 2009.

01 Nov 2006 10:21 pm

Physical Therapy Links

American Physical Therapy Association

Advance Magazine: a free biweekly PT magazine.

University of Michigan-Flint: where I went to PT school.

Sharp Grossmont Hospital: where I used to work.

Brain Tumor links

mAss Kickers – My newest “project” designed to empower people with knowledge.

US News and World Report primer on brain tumors. 7/24/07

Information about Meningiomas from the Brain Science Foundation:  Meningioma Project

Very basic brain anatomy from the American Brain Tumor Association

Questions to ask a neurosurgeon from the Meningioma Mommas website

I highly suggest joining a message board or discussion forum for a national brain tumor organization. There is some great information/advice in there. Be careful though… what you read in there may scare you because of the “real” situations/problems. You don’t have to post a message if you’re uncomfortable, but the people who usually post in there are really friendly and knowledgable. A word of advice though, double check any info you pick up with a health care professional before making any decisions

nbtf.jpg

National Brain Tumor Foundation: based in the West coast of the USA.

bt1.gif

The Healing Exchange Brain Trust: based in the East coast of the USA.

The Brain Tumor Society: based in the East coast of the USA.

The Brain Tumor Foundation: based in New York.

Southeastern Brain Tumor Foundation: based in the Southern USA.

American Brain Tumor Association: based in the Midwestern USA.

Fairview-University Brain Tumor Center: based in the Midwestern USA.

Brain Tumor Foundation of England: based in England.

Brain Tumor Foundation of Canada: based in Canada.

Search Magazine: a newsletter dedicated to brain tumor patients and families. “Survivor Stories” column gives first hand inspirational accounts of life as a brain tumor patient.

mm.gif

Meningioma Mommas: A site dedicated to meningiomas. It’s not just for mammas!

bsf1.gif

Brain Science Foundation: A group dedicated to Brain Tumor research. The founder is a meningioma survivor.

Chordoma Support group: A site dedicated to Chordoma tumors

Links For younger patients

I'm Too Young For This! A hip site for young people with cancer.

Planet Cancer: A cool site for young adult patients with cancer. Has a great message board.

Vital Options: One of the first organizations to support young adults with cancer.

The Ulman fund: Founded by cancer survivor Doug Ulman this fund is dedicated to supporting young adults with cancer. He has a picture of him running the NY Marathon with Lance Armstrong. Sweet!

Young Adults Surviving Glioblastoma: A site dedicated to supporting young adults whose lives have been affected by glioblastoma brain tumors.

NBTF YA Support group: If you have/had a brain tumor and are between 18-35 years old, then this is a must see page for you!

Voices of Survivors – Real patients talk about their perspectives on “survivorship” also includes impressive lyrical creations by talented survivors.

Clinical Trials: Research is essential to the fight against brain tumors/cancer. Consult with a physician before agreeing to do a clinical trial.

VirtualTrials.com: a listing of clinical trials for brain tumor specific research

Clinicaltrials.gov: a listing of all registered clinical research with the US Government.

Tumor mAss Kickers

Liz Holzemer: an inspirational meningioma survivor. She founded Meningioma Mommas and is a professional writer as well.

Bluberry News: blog from a guy and his wife in Scotland that had PDD and PDT, a new type of light treatment for brain tumors.

Tumorland: A great blog for brain tumor information. This blog has a lot of information about chemotherapy and other types of brain tumor research. It was created by a writer so it is MUCH more elequent then my blog!

An Interview with Dr. Peter Black: This guy is one of the researchers leading the fight against brain tumors!

Audra Coldiron: A young mom and a brain tumor survivor

The Journal of a Prizefighter: A young man’s fight against Hodgkin’s disease

ABC.com article about a Doctor and Brain Cancer Survivor: An Exerpt from Dr. Bernadine Healy’s book Living Time

Jerry Kline: A glioblastoma multiform survivor his site has links to other GBM survivors! Those people are amazing!

Michael Tiernan: A Testicular cancer survivor and awesome musician. Check out his Site!

Wonky-eye: A young wife’s perspective on her young husband’s brain tumor

Stupid Cancer blog: A compilation of other blogs written by survivors.
Non-boring, readable brain tumor articles

Stephen Brown:  Triathlete, Coach, Writer, Speaker, Survivor

Study finds drug that fights brain tumors and cancer

Good Friends Are Good For You

Your guide to never feeling tired again

31 Oct 2006 11:36 pm

gone fishingI’m just a short Filipino-American guy from Michigan. I was a nerd in High School. “A’s” filled my report cards and I still was into cartoons and science fiction. The only thing that kept me from getting picked on was the fact that I was good at sports. In high school, I was a First team, All-League defensive back in football, a 1991 Michigan State champion in wrestling, and a 4 year state qualifier in track. I was also an active member of the Student council and the National Honor Society.

In undergrad at the University of Michigan – Ann Arbor, I discovered beer, but somehow I was able to graduate with a Bachelor’s of Science degree in Biology. Along the way, I helped to establish the first Asian-American interest fraternity in the Midwest, was an officer in both the Filipino American Student Association and the Asian American Association, and joined an a capella group, 58 Greene, with no musical experience (it helped that one of my good friends was the director and that a lot of my friends were already in the group). After undergrad, I worked for 2 years as a Physical Therapy Aide on the rehab unit at the University of Michigan Medical Center, Department of Physical Medicine and Rehabilitation. I saw some pretty amazing stuff there. I really enjoyed helping people get better. After working there, I knew I was going to be a physical therapist.

I then moved to LA to go to school full time and improve my GPA before applying to grad schools. After a year in California, I moved back to Michigan to start physical therapy school at U of M-Flint. Before I left for LA, I applied to the U of M-Flint Physical Therapy Program since I still had my Michigan residency. I graduated from Physical Therapy school with a Doctor of Physical Therapy (DPT) degree in December 2003. In 2003, I also earned the Certified Strength and Conditioning Specialist (CSCS)  certification from the National Strength and Conditioning Association (NSCA).  I woke up one morning and decided I should move to San Diego to start my career. So I did. I’ve done the Michigan-California drive five times, three times with a companion and twice by myself. I knew 2 people in San Diego when I moved. I made some good friends in San Diego, but in the back of my mind I still missed everything and everyone I left behind in Michigan.

Things were going great in San Diego! I loved my job and all the outdoor activities San Diego had to offer. Then in the summer of 2005, I started getting intermittent episodes of dizziness, headaches, and nausea. I had an excuse for each symptom and would push through the symptoms to function everyday. I have always been the kind of guy who likes to push his physical limits. I learned how to swim just so I could go surfing and do triathlons. I completed 2 sprint triathlons and a half marathon in 2005. Like many other single men, I moved to the West coast from the Midwest in the hopes of finding a sweet job, an active lifestyle, and a nice girl.

Nothing could have prepared me for the news I was about to receive. Brain cancer/tumors are pretty rare when compared to other types of cancer. On September 10th 2005, I found out I had a huge brain tumor, a meningioma the size of a golf ball, on the tentorial membrane at the base of my brain between my brain stem and my cerebellum. The brainstem controls basic/unconscious body functions like heart rate, breathing, and facial/tongue movements. The cerebellum controls coordination and fine motor skills. Pretty important stuff at risk! I have a lot of friends here in San Diego, but I wanted to be with my family. The first people I called when I found out were my “Mommy” and “Papa”! I finally realized how much I loved my family.  I had to talk to my brother separately once I figured out what was going on!  The rest of my family and friends were informed once I “digested” the news! In the following months: I had brain surgery to have the tumor removed; radiation therapy to get rid of the remains; Speech, occupational,and physical therapy for all the physical and mental impairments I was left with after the surgery. I was receiving rehab at the hospital where I used to work. In a strange twist, the people I used to work side by side with were now working with me as a patient!

As a patient I really wanted to be prepared for what lay ahead. My medical background helped immensely, but there were still a few things I wasn’t ready for. I’ve been exposed to a number of patients with different diagnoses, but I couldn’t find a book or other resource by a young single guy in the same boat as me. I was lying in my hospital bed and decided that when I got out of this, I would write a book… a “real” account of life as a patient for therapy students and younger patients with common situations and written in a style in which they could relate.  published my first book 2 years after my brain tumor diagnosis:  Reversal, When a Therapist Becomes A Patient, and 2 year later self published my second book:  Awakening, Becoming a Brain Tumor Thriver;

Since my diagnosis I have found new path in Cancer/ Brain Tumor Survivor Advocacy through education.

  • When I was first diagnosed, I led a team that raised over $11,000 for the National Brain Tumor Foundation; created a support network for young survivors named TUMORS SUCK!;
  • Led the development of a unique website called mAssKickers.org designed to empower cancer/brain tumor patients with knowledge;
  • Organized national book tours with stops in Evanston IL, Flint MI, Oakland CA, Boston MA, Ann Arbor MI, Miami FL, Tampa FL Chicago IL, Austin TX, Houston TX, New York NY, Loma Linda CA, San Diego CA and recently started doing online lectures;
  • Became active in the young adult survivor community, brain tumor survivor community, and Oncology Physical Rehab movement; and
  • Recently I have been traveling internationally with cancer survivors to do presentations about a proactive life (thrivership) after a cancer diagnosis at: Ateneo University – Manila, Philippines (2013), Yongsan US Army Garrison – Seoul, South Korea (2014), National University – Singapore (2014), Hospital Paul Devaux at the Institute Gilles Bordeaux – Brussels, Belgium (2015), and most recently we met with the patient support organizations in Cape Town South Africa: CHOC South Africa and PLWC  (2016).  There are plans to do more international “thrivership educational missions”

I have accomplished a lot in the past few years, but I’ve always felt out of place.  Where did I belong in the survivorship community? I didn’t technically have “cancer”, but that “benign” tumor hit me pretty hard. (Actually “non-malignant” brain tumor is the correct term. There is no such thing as a “benign” brain tumor. Look up the definition of “benign.”) It didn’t knock me out, so it’s my turn to retaliate and go on “the offensive“! That word has a loaded meaning… hee hee hee… mAss Kickers Foundation is a community of ALL people affected by tumors or cancer (survivors and our loved ones) that want to fight back against these horrible diseases!   Sharing our Knowledge, Promoting Unity, and Supporting Research is how we will Empower ourselves in this epic battle! (Use the K.U.R.E.)

The rest of my story isn’t written. I’m still improving and re-creating myself. I’ve learned a lot about myself already. All I know is that I’m going to fully enjoy living the rest of my story.  I have a few more things I need to do!  Stay tuned!