Saturday, June 30, 2012 need brain surgery!

Then they'll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say to me, say to me, say to me,
This one's a fighter
Gym Class Heroes, The Fighter
The Papercut Chronicles II, 2012
On Monday I had the most comprehensive mAss kicking appointment of my life. I found out many new things, things that other doctors had not bothered to tell me or that had somehow been looked over. My brain tumor (outlined in blue on the left) is not actually an astrocytoma, but an oligodendroglioma; it is also grade 2 and is located in the left frontal insular region, not in the left frontal lobe where I had been originally been told. According to the National Brain Tumor Society, this type of tumor accounts for 2% of all brain tumors. National Brain Tumor Society also states that brain tumors are the leading cause of cancer-related deaths for children under AYAs really need more clinical trials and research being put towards mAss kicking.
Contrary to MRI reports I’ve received over the past five years, the neuro-oncologist that I saw declared my tumor “stable by no means.” Radiologists had been comparing my most recent scan only to the previous scan from 6-12 months ago instead of comparing the current scan to the original scan from 2007. When comparing scans that are 6-12 months apart you don’t really notice significant growth. However, after comparing recent scans to scans from 2007, you can see noticeable growth where the tumor has spread into the posterior and is infiltrating like a douchebag! This podcast from Johns Hopkins best explains the nature, progression, and treatment of gliomas like mine.
Radiation, chemo, and gamma ray treatment do not apply at this point in time because of the low graded nature of the tumor. The two options are: a) watch and wait or b) act aggressively with surgery. I’m set on surgery and am starting to book appointments with neuro-oncologists across the nation. Somewhere down the road, whether that be in a year, five, or a dozen, the “watch and wait” option leads to a guaranteed grade 3 tumor (aka brain cancer) and eventually a grade 4 tumor. Brain tumors graded 3 and 4 have to be treated with chemo and radiation alongside surgery, making the recovery process much harder and providing a much worse prognosis. My type of tumor, oligodendroglioma , typically reaches grade 3 after an average of 10-12 years from initial diagnosis. Time is on my side because I’m young and have not yet reached grade 3; regardless, 5-10 years from now the tumor could be much deeper, making the surgery much more complicated and risky. As the neuro-oncologist on Monday put it, “the risks will never be equal to or lower than they are today.” When it comes down to making the big decision about surgery, I have to take the risks today or tomorrows benefits. Ultimately, surgery to remove the tumor is inevitable, so I’m going to get it out of the way before I start college in a year.
Here’s a metaphor that the neuro-oncologist from Monday used: You’re driving on the highway and you hear on the radio that there is an icy bridge with serious accidents on it 10 miles down the road. You have 10 miles to find an exit, so you don’t have to get off the road on the first exit (don’t need to have surgery today, tomorrow, or next week), but you do need to get off of the highway - you know what lies ahead.

Getting at/to the tumor in the beginning and exiting when the surgery is almost done will be the most dangerous parts. The best case scenario without any complications during surgery would be spending a few days overnight in the hospital with 2 weeks to 4 months of basic recovery and a solid 2 months of physical therapy. The “good” news is that the location of tumor does not directly affect major functions like motor, speech, vision, or memory. There is also no direct hearing or vision impact. The location of the tumor only directly affects taste and smell. However, surrounding veins and arteries (like the middle cerebral artery) do carry blood flow directly to those important areas. I’m skipping a biopsy of the tumor because it involves taking risks without really gaining anything. Doctors are already 95% sure of the cell type..there’s no use in taking the risk for another 5% confirmation without any other gain.

I’ll be staying downtown at DMC for about 5 days the week of the 16th for a continuous EEG and sleep study to check out seizure activity and confirm or dismiss if my symptoms are seizures seeing as they have changed since 2007. If they’re not actually seizures, then I’ve been wiped out on Keppra for 3 wasted years! The odds that my symptoms are seizures is high though, because the insular region is known for producing “weird” and “atypical” seizures, like my symptoms. I guess the EEG will be the judge of that!
I’m currently looking into neuro-oncology surgeons at DMC, Johns Hopkins, Mayo Clinic, Memorial Sloan Kettering, possibly UCSF, and possibly UMiami. I have many mAss kicking friends to thank for these wonderful connections. I’ll probably post a video update from my hospital bed next week.

Monday, June 25, 2012

OMG Conference Wrap-Up! "We Are Not Alone"

This week is the 10th annual  National Young Adult Cancer Week. Why should you care? According to the National Cancer Institute:
* Nearly 70,000 people between the ages of 15 and 39 (collectively called AYAs) are diagnosed with cancer each year.
* Cancer kills more people in the AYA age group than any other disease.
* Even though survival rates have steadily improved for children and adults who have cancer, survival has lagged behind for AYAs.
* The roadblocks: low number of clinical trials for AYAs and poor participation; delayed diagnosis of primary cancers; inadequate treatment practices and settings for AYA cancer patients; poor understanding of the biology of AYA cancers; limited access to care and insurance coverage for AYA cancers; limited emphasis on prevention and early detection for AYAs; and unique AYA psychosocial and supportive care needs.
These past few days, I had the opportunity to spend time with the 550 most inspirational people I’ve ever met at Stupid Cancer’s annual OMG Cancer Summit for Young Adults in Las Vegas, a conference for young adult patients, survivors, and caregivers.
We came from all walks of life: some of us had cancer when we were children; other were adults just starting their independent life. Some of us lost breasts, testicles, and limbs; others didn’t even lose their hair. Some weren’t even old enough to drink; others were 20 years in remission. It wasn’t a contest or a pity party, because we all had one thing in common: we had cancer. We were put through an emotional, mental, and physical challenge. It didn’t matter if we were still in treatment or out of treatment, we all had one goal: to get busy living and share our experiences with others. (If you have 10 minutes, here’s a documentary put together by Stupid Cancer, the premier young adult cancer organization.)
It’s a club you don’t want to belong to, but like founder Matthew Zachary said with a nod to Olive Garden, when you’re here, you’re family.
This weekend, I was with 550 people who understood everything I’ve gone through.  However, we must continue to educate, advocate, share our stories, and fight for other young adults. Please take the time to learn more about cancer in young adults. If you’ve had or have been affected by cancer, share your story.
We’re not alone.

Advocacy Action Center

Advocacy Action Center

Welcome to the 2012 Three Week Challenge! Over the next three weeks, advocates from around the country will be taking action to generate buzz in both Congress and the media about the Pancreatic Cancer Advocacy Day and the Pancreatic Cancer Research & Education Act (S. 362/H.R. 733), critical legislation that will help us improve pancreatic cancer survival rates. The challenges are easy activities that you can do from home in less than 10 minutes.

Monday, June 11, 2012

PET Scan Party

All the madness that occurs.
All the highs, all the
As the room is spinning goes
We'll run riot,
We'll be glowing in the dark.
Coldplay, Charlie Brown
Mylo Xylo, 2012
A positron emission tomography, or a PET scan, is pretty similar to an MRI. From a visual standpoint, the machine looks like an MRI machine, only it's about 1/3 of the size in length. The best part about PET scans are that they barley make any noise. They're about as loud as an air conditioning unit, much quieter than the banging and knocking of an MRI machine. The biggest downside to this visit was probably all of the failed IV picks - after six attempts two were finally placed. I’d say that that is a pretty good downside for a hospital visit! The purpose of this scan was to further investigate the increase in density that was discovered in my brain tumor a few months ago, and to gain a better understanding of the cell type of the tumor so that we know what to do or what not to do next. I have a feeling that my next course of action will either be drastically new, or the brain tumor questions and probing will be put to rest..I should get the results within the next couple of days.

The last time I was at DMC Children's Hospital was in 2008. I was a patient there for a 5 day stretch that consisted of a continued EEG and sleep study. Within the first couple of hours of my day, an elderly volunteer came into my room and asked me what my favorite color was. I told him it was a close tie between blue and black..he vanished and moments later reappeared with a handmade fleece blanket! Who knew a cozy blanket could be so comforting. The downside to DMC Children's Hospital is that well, it's a children's hospital. As a 17 year old soon to be high school senior, sharing a room with a 6 month old isn't very much fun. I love little kids, but in those circumstances it would have been much more enjoyable to room with someone my age or older who can relate to procedures or common interests. I suppose that depending on the hospital, the older mentor-younger sage scale will always be teeter-tottering.

On the other hand, nurses and doctors working at a children's hospital typically outwardly express more energy, creating a warmer, friendlier environment. A particular nurse that I met on this adventure, Jane, went out of her way to make me laugh and build a patient-nurse connection. We discussed my plan to pursue a special needs education career path, and she even recommended a book to check out this summer - Musicophilia. Written by neurologist Oliver Sacks, the book explores how music affects the brain, human emotions, moods, etc. There are even documentations of how music has helped some of his epileptic and Parkinson’s stricken patients learn to thrive. I’ll let you know what I think once I’ve checked it out!

After the long day at DMC I kicked off summer with a bonfire celebration and pool party that went a little something like this..

Wednesday, June 6, 2012

RESPONSE TO HUFFUNGTON POST ARTICLE about "Nonmalignant" brain tumors

To the Huffington Post, Dr. Bederson and Ms. Crow:

While I appreciate your raising awareness about brain tumors by publishing this story, I would like to express my concern with two phrases used in your article; "benign brain tumor" and "likening the tumor to a wart."

As a former physical therapist turned nonmalignant brain tumor patient, I have experienced first hand the severity of these tumors. I am glad you reference the location of the nonmalignant tumor, but the long term effects of a nonmalignant tumor can greatly affect quality of life and this issue needs to be addressed.

 While the mortality rates for the medical treatment of nonmalignant brain tumors are comparatively low when contrasted with certain other types of tumors/cancer, the long term impact following treatment of these tumors can have significant lasting effects. This may include short term memory loss, coordination impairments, balance impairments, alteration in affect/mood, chronic pain, seizure disorders, visual loss, difficulty swallowing and a variety of other life-changing symptoms. Nonmalignant brain tumors can be life-threatening as well. People diagnosed with these tumors need long term follow up scans to be sure their tumors are not growing. Those whose tumors have been treated also need follow up scans to detect possible tumor recurrence after treatment.

 It is very common for medical professionals to dismiss a malady that appears to be not as serious as a "cancerous" tumor. As a medical professional, I realize the short term emphasis is on treatment of the condition. As a 6-year nonmalignant brain tumor survivor, I think it is important that medical professionals and the general public understand the severity of specifically nonmalignant brain tumors. As a medical professional turned nonmalignant brain tumor survivor, I urge you to consider the long term effects of a nonmalignant brain tumor before dismissing a "benign" tumor.

Please do not describe a nonmalignant brain tumor as a "wart". The long term effects on a patient can be quite debilitating dependent on the location of the tumor, plus any deficits that occur following treatment. There's nothing benign about any brain tumor!

I sincerely wish Ms. Crow luck in her journey with this disease and her recovery.

Eric Anthony Galvez DPT
6 year meningioma nonmalignant brain tumor survivor
Founder, President mAss Kickers Foundation

Tuesday, June 5, 2012

Survivors & S'mores

The original mAss Kicker himself

San Diego - Mission Beach - May 25, 2012
What do you get when you combine an evening of sand, Survivors & s'mores? The 1st Annual YACS* Bonfire & Soiree, of course!

Our Soiree came complete with an amazing all-star lineup of cancer rockstars! Not only were we lucky enough to have Jenna Catalona from First Descents in town with the FD Mobile, but Eric Galvez, founder of mAss Kickers Foundation, Brandon Bethea, founder of Fin Forward, Amanda Hitt, founder of IAP4P & Trevor Jones, founder of Flex Watches all shared in the Survivor love... not to mention an eclectic group of Survivors, caregivers & advocates representing various Survivor organizations such as Stupid Cancer, LLS, Relay For Life, Keep A Breast & Young Survival Coalition.

Some of us have known each other for years, while some of us were meeting for the first time that night. Either way, regardless of our unique backgrounds, diagnoses or personal connections to cancer, we all came together to make friends, spread awareness & enjoy yet another successful San Diego Survivor event!

A beautiful Survivor sunset
There's something incredibly empowering about being in the presence of this many fearless, genuinely positive young adults who are all 100% committed to fighting cancer & celebrating Survivorship... it fills you with an energy that you can't help but share with everyone around you. Our bonfire was exactly that... the s'mores were just icing on the cake! :)

Check out the First Decents | Flex Watches video from the event!

* YACS = Young Adult Cancer Survivors :)

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