They Call Me Galvez

Realizing you can’t do something is extremely humbling.  Pursuing another graduate degree in a completely different profession with some pretty severe impairments was pretty ambitious!  I think that accomplishing so much after major brain surgery probably inflated my confidence and gave me a false sense of invincibility.  For the first time since my diagnosis I couldn’t figure out how to address my impairments… in an academic setting.  I have learned that the cognitive/short term memory impairments are an extremely difficult to overcome in a formal graduate school environment.  Impairments were easy to compensate on my own with my smartphone for note taking in meetings and a “lax” work environment.  I’m just not sure if I have the energy to pursue another degree knowing that there is someone out there who needs that extra nudge to become an advocate for tumor/cancer survivors OR more importantly help survivors find their own purpose post-treatment.  Maybe if I was 10 years younger I would have had the energy to both pursue another degree AND do advocacy work.  After careful consideration, I’ve decided to “punt” on the additional degree and shift my focus back to empowering oncology survivors with a proactive attitude (AKA “Kicking Mass”). I’m now understanding that I was spreading myself thin trying to go to school AND run mAss Kickers Foundation. 

While it has been humbling realizing that you can’t do everything, new interests have emerged.   In the past 2 years here in Houston, I have learned more about issues in disability.  Earlier this week I had the opportunity to speak on a panel at the University of Texas, Medical Branch in Galveston (BTW, cool beach city south of Houston) to discuss disability and healthcare.  It was only the second time I’ve spoken specifically about disability issues.  There are physical therapy rehab programs close to Houston, so maybe I’ll get more involved with them…  Check out the first time I’ve spoken about disability issues.  Disability advocacy is now on my radar and obviously near and dear to my heart!  Disability is very prevalent in the brain tumor survivor population and is an issue that many survivors are unfamiliar.  Maybe combining bout interests… Do many brain tumor survivors apply for disability benefits… Medicare/medicaid?

The move to Texas has definitely been an adventure: 

• moving here with Hurricane Harvey,
• dealing with scooter travel in heavy rain,
• going back to school after a 15-year break in a completely different profession,
• being the “old guy” in the classroom with the severe mobility and writing impairments,
• figuring out public transit,
• traveling in an unfamiliar environment,
• grocery shopping,
• learning about the Americans with Disabilities Act (ADA),
• disability advocacy,
• and connecting with so many cool people! 

I have no regrets moving to Houston to try something different.  Experience is the best way to LEARN!. Probably not efficient, but I learn best through experience.  I’m continuing to meet amazing people AND I happen to live next to the #1 cancer treatment and research center in the world, MD Anderson!  While it has been very humbling trying to start over with so many obstacles, I have found new interests and positioned myself to make a bigger impact in “Post-treatment Thrivership.”  Take home lesson:  Determine what you can’t do, then “Do the Hell” out of what you can do.   Thank you Susan Tortolero-Emery, Mary Ann Smith, Christine Markhan, Lex Frieden, Vinh Nguyen, Roxanne Funchess, the Mirs, the Scotts, the Villatuyas, the Jacksons, the future Paddocks, and all the cool people I’ve connected/re-connected with in Houston.  Maybe I’ll start blogging again about the new adventures in Houston…  Do people even blog anymore?

I was expecting a return to academia to be challenging, but it has been much tougher than I anticipated.  Impairments that were potential issues for me when I was starting my journey into life as a brain tumor survivor are resurfacing as new challenges in a new environment.  The most shocking impairment for me is short-term memory loss.  I’ve been able to hide these deficits with technology and putting things in my long-term memory, but has been exposed in a formal academic setting. Learning new materiel/concepts for quizzes and exams in a classroom environment with time constraints is more difficult to get stored into my long term memory.  My memory is not completely horrible, but there is definitely difficulty remembering things that are presented to me for the first time.  Initially, I attributed it to old age or the lengthy break from school, but I noticed that things that I read don’t “stick” as easily as they did before.  I did recall that on a neuro-cognitive test after brain surgery, one of my physicians mentioned a “mild cognitive impairment”.  I’m trying to locate the official note now.  “Chemo brain” or other memory impairments are probably reasons why many of survivors don’t return to school.  My long term memories are still intact, but my short term memory is definitely impaired as evidenced by my performances on in-class quizzes and exams.   This has been extremely frustrating!  I’ve been able to compensate short memory deficits with:  the use of my smart phone to jot down notes/reminders, a lot of repetition, and concrete application of new material.  When I first started down this ambitious path of returning to school as an older student I remember thinking, “You can’t teach an old dog new tricks.”  I think a more correct approach to take is, “How do you teach an old dog new tricks.”  Starting a program in a new professional discipline is tough, but combining that with cognitive and physical challenges is VERY difficult.  I’m trying out different learning strategies to see if that will help retain new memories.  I’m trying not to get discouraged by my poor academic performance, but this is very frustrating and a huge blow to my confidence.  I can only imagine what this does to the confidence of a pediatric, adolescent, or young adult patient with short term memory issues who is just starting to create his/her identity.  I’m starting to gain in-depth understanding of the issues neurology patients with memory impairments must face. It’s been a very “eye opening” experience. I’m starting to wonder if returning to school was the right move… why do I need to get another degree?  My goal in returning to school in Houston was to do research and make connections.  I am meeting a lot of people in the Houston Disability Advocacy community through the Independent Living Research Union at the The Institute of Rehabilitation and Research.  I am trying to figure out my next move.  Do I spend all the time and energy to get another degree?  Or do I apply my experiences to the disabled/brain tumor community?  If my long term memories are still intact from before the surgery, I still have my physical therapy knowledge and leadership knowledge… I can still apply that prior knowledge to everything I’m doing now and planning to do in the future.  Just have to decide which professional path to take…

There is a connection… I’m starting to do research on Public Health!

Public health refers to “the science and art of preventing disease, prolonging life and promoting health through organized efforts and informed choices of society, organizations, public and private, communities and individuals.”[1] It is concerned with threats to health based on population health analysis. The population in question can be as small as a handful of people, or as large as all the inhabitants of several continents (for instance, in the case of a pandemic).

The focus of public health intervention is to improve health and quality of life through prevention and treatment of disease and other physical and mental health conditions. This is done through surveillance of cases and health indicators, and through promotion of healthy behaviors.

Does post-treatment exercise/physical activity lead to post treatment “thrivership”?  I’ve personally seen so many examples of this in my survivor buddies!  Public education (Sesame Street), Post-treatment thrivership, exercise/physical activity, Dissemination (Usher’s musical skills) are connected… HAHAHA! Yes, I have a “unique” way of looking at things…  I’m teaming up with the Ulman Cancer Fund for Young Adults on a session at CancerCon to promote the benefits of exercise/physical activity for survivors.  Should be a great session…

I’m shifting my focus this year.  Most of the physical activity/exercise that I’ve done to this point has been based on a return to function or modifying things to adapt to my physical impairments.  One of the things that has been neglected is my fitness level.  I still ride my exercise bike and use my pull-up bar daily, but I’m noticing that I’ve been stuck in a rut.  It is now time to shake things up!  After my first few sessions at CrossFit 858 Mission Gorge,  I’ve definitely noticed that I’m not “fit.”  I’m not overweight, but my physical capacity is definitely impaired. My body has adapted to short bursts of power, but not SUSTAINED power.  Ever since I started physical rehab, the focus has been on the return of function, not general fitness.  I stopped going to formal physical rehab sessions once I accomplished my rehab goals for “modified independent functional mobility” with an assistive device .  Now I have to establish “fitness goals.”  I definitely realized that I have difficulty doing any open chain movements and I fatigue easily.  I can’t complete a full circuit without completely fatiguing my muscles.  I start out strong, but my the end of the third set, I couldn’t even complete a full movement!  This will be addressed. Functional mobility is essential to rehabilitation, but very rarely are the next steps addressed mainly because patients are left to figure this out on their own… The Challenge Center  does a great job addressing this.  They have an exercise groups for patients after they are done with rehab which are moderated by athletic trainers.  After I was done at the Challenge Center, I still wanted to address physical fitness/athletic endeavors. I’ve found that CrossFit has the potential to address the athletic intensity in me.  I have enjoyed working with Coach Mark Lin because we are challenging muscle groups that haven’t been used in a while.  He has no problem pushing me.  I was very upfront with my physical impairments and he has thought of creative ways for me to do different exercises.  I still wear my “physical therapy hat” whenever trying something new…  Things will get interesting the next few months.  I’m looking to combine tumor/cancer survivorship, physical rehab, and physical fitness (post treatment thrivership)… Let’s BUST A MOVE and get busy sweating!  Stay Tuned…

Sunday was the 10 year anniversary of the brain tumor surgery that changed my life forever.   I wanted to celebrate, but honestly I felt like I was in a “funk.”  Maybe it was PTSD or a bout of “Survivor’s Guilt” because I finally had some time to sit down and reflect on things.  In the past 10 years, I’ve gone from young physical therapist to rehab patient to author to survivor advocate to nonprofit professional.   It has been a crazy ride!  I’ve met so many great people, but at the same time I’ve LOST so many good friends to tumors/cancer.  It doesn’t get any easier losing people.  I’ve noticed that many other advocates do not have as hard a time dealing with this.  I wonder how they do it.  Memories of the friends we’ve lost live on, but at the same time I always lament the potential new memories that we could have shared.  I have always had a hard time saying goodbye. I have gotten close to a number of survivors because we have so much in common. It has always been easy for me to form these bonds.

As a physical therapist, I always referred patients to other people/professionals if I couldn’t help them.  Often, I would never hear from them again.  However in cancer advocacy/ social media, we often get updates on how survivors are doing.  Of course, I like hearing the good news or seeing the funny things my friends share on social media.  However, whenever I hear of a friend passing or struggling… it always hits me hard.  It inspires me to work harder, but at the same time it hurts.  I didn’t think that it would hurt this much, but it always makes me sad thinking that I put my family and friends through a similar situation.  I naturally get close to people all the time because I like to joke around with them and always try to listen/learn something new from people.

Maybe this “funk” is “Survivor Guilt” because part of me still feels very lucky to be able to do the things I do.  I do realize that my situation could have been much worse.  Based in the location of the tumor, I could have woken up from surgery on a permanent mechanical ventilator or even stuck in a “vegetative state.”   I feel that my prior and current physical activity level may have aided in my recovery, but I am still very curious about HOW I am able to do so much after major brain surgery.  Thank goodness my cognition wasn’t impaired so I can discover how I was able to do this!  I think that exercise/physical activity made my recovery more efficient, by perhaps increasing blood/lymphatic circulation or somehow exercise makes the neurons more efficient.  Everything I’m doing now is to honor those of us that had to deal with a tumor/cancer diagnosis AND make things easier for future tumor/cancer patients.  I support early detection/prevention, but there is still a very large need for resources for newly diagnosed patients and ALL those who are affected by a tumor/cancer diagnosis.  My “funk” is temporary, but I’ve learned to use it to fuel my activities.  I’m truly sorry for scaring my family and friends 10 years ago.  I can’t even imagine what you went through… Thanks for having my back all these years, I’ll make you proud…

Please support my quest to teach the world “How to Kick mAss” next year.

More exciting things are in the works!   STAY TUNED!

These are my thoughts before major brain surgery 10 years ago.

Thursday, October 20, 2005

Looks like the incision is going to be bigger than I initially thought it was going to be… All the way around my ear. I’m told that the hair will grow back, but maybe I’ll just keep it shaved all the time now. Yesterday morning I threw up twice. I couldn’t keep anything down. Luckily, I had another appointment with the neurosurgeon that afternoon. He took me off of prednisone and is starting me on dexamethasone, another steroid. I’ve heard some nasty stuff about the side effects. I’m gonna try to stay off the medication as much as I can. But sometimes I really need it.

In case you are wondering what I’m going though, imagine the worst hangover you’ve ever had… the unsteadiness, the feeling of nausea, and the headache… add a little numbness on your left cheek and tongue and there you have it. Now grant it, I’m not like this all the time, but there are some mornings when the only reason I get out of bed is to rush to the bathroom to throw up. The steroids help immensely, but on the days I’m off of them… yuck. Not pleasant to be around… I have a hard time walking a straight line, but I can do it if I go really slow. Everything moves really slow, not like elderly person slow, but definitely slower than normal. Now would be a good time to race me if you want to win.

I’ve kinda shifted my focus from movies to reading. Currently on: Lance Armstrong’s It’s Not about the Bike, Harry Potter The Half Blood Prince, and the Essence of Swiss Ball Training. Definitely not bored anymore. Thank God I’m not bored. I almost watched the Olivia Newton John roller skating epic Xanadu earlier this week! Damn! That definitely has to be my lowest point. When I realized what I was watching, I was like “OK, I need to put an end to this downward spiral!” You can only watch so much TV and that was my breaking point. I also found out I suck at video games. In Halo I keep running into walls, in Madden I can’t pass or play defense, in racing I can’t take turns without hitting the wall… I wasted too much time the past few years “playing” outside or going to the gym so I’m a little behind in my gaming skills…

As for my mental state… honestly I think right now I’m more worried about the Foley catheter. You would be, too, if you knew where it goes and how it gets there. (It’s basically a tube they stick in your penis that runs to all the way up to your bladder to help with urine excretion.) I’ve been told that I’ll probably be out when they put it in, but I’ll wake up with it in me and I’ll be awake when they take it out… that’s gonna hurt =(

Dude, I’m gonna be buck naked in front of bunch of people. I don’t know how I feel about that! I don’t like being naked in front of myself, let alone 10-15 strangers! Hopefully I’ll at least get some cute nurses to take care of me… My OR time is from 7:30 to 3:30… Jeez, that’s got to be enough time to get everything! It seems like a long time to me. I wonder if they take coffee breaks or lunch breaks.

Anyways the reality of brain surgery is finally sinking in. I’ve had 2 pre-op appointments this week. I guess there is a serious chance that I might lose the hearing in my left ear. Apparently they will cut into the Mastoid and Temporal bones. They are trying to avoid the semi-circular canals if possible, but if they can’t access the whole tumor they will need to go through the semicircular canals to get everything. If that happens, there is a 99% chance I lose the hearing in the left ear and I will definitely have more problems with dizziness for a few more months.

Kinda sucks that the initial problem that I was having could be a side effect for the treatment of the tumor. Well, at least I have another ear and I won’t be completely deaf. Whoa. This is real, no more talk… this is gonna happen! So on Saturday, I’m going to SeaWorld to take my mind off of things. Sunday will be another day of football. Monday will be my quiet prep day. I guarantee I’ll feel like shit DOS (day of surgery), but Wed POD 1(post-op day 1) I should be able to take visitors. Probably not for too long but it will be nice to have visitors. By Thursday I should be much better and able to tolerate more. No crazy bar hopping or anything, but maybe a friendly game of “Cranium.”.. har har har.

Monday, October 24, 2005

Looks like I’ll get admitted tonight. Just got a call from the hospital. Was supposed to go in at 5AM tomorrow. Slight curveball. I know a lot of you wish you could be here with me. I’ll strike a deal. This is the playlist I’ll be listening to tonight on my iPod. Just play one of the songs and you’re there with me.

Lose Yourself -Eminem
Mr. Brightside – The Killers
It’s So Easy – Guns N Roses
Breakout – Foo Fighters
Higher Ground – Red Hot Chili Peppers
Gold Digger – Kanye West
Jesus Walks – Kanye West
Ready or Not –The Fugees
Superstition – Stevie Wonder
In the Air Tonight – Phil Collins
A Little Respect – Erasure (don’t laugh)
The Promise – When in Rome
Only You – Yaz ( I like these song OK!)
Don’t Stop Believing – JOURNEY!
Blaze of Glory – Bon Jovi
THE FINAL COUNTDOWN – EUROPE!

See what happens next… pick up the kindle edition of Reversal:  When a Therapist Becomes A Patient… Only $9.99 AND 100% of royalties go to mAss Kickers Foundation.

The mAss Kicker Mobile II is dead.  I need a new ride ASAP because being cooped up at home is driving me crazy!  This is day 5 .   I was supposed to go to the APTA, CSM Meeting in Indianapolis on Wed, but it just would have been too hard getting around!   I’ve tried going out and using a manual wheel chair but failed. My coordination problems make propelling the chair both time consuming and energy consuming.  I’ve realized that balance and coordination are both easily overlooked when you have no problems.  Simple activities that are reflexive and require no thought now require so much concentration and planning. I move at an extremely slow pace because I have to think about the sequencing.  I have become reliant on the mAss Kicker Mobile to get around without assistance. It is more efficient, but I am realizing that I’ve been neglecting my own personal rehab/progress. My mobility and energy limitations force me to find alternative ways to get what I need!  For example: I am relying on public transportation to get around.  I also found a grocery store that delivers groceries. Weird. Cool though.  Still figuring things out! The mAss Kicker Mobile III is ordered and should be delivered next week.  In the mean time, I have to rely on my crutches or old manual wheelchair to get around.  Using those mobility devices = “a really slow or tired Galvez.”  When I was in PT school, mobility scooters were “frowned upon” because they don’t promote activity.  I am fully aware of that risk, so I stay physically active.  However,  I’m not sure I’m doing enough in terms of my personal rehabilitation to address my physical impairments.  My friends always harp on me for this!

The mAss Kicker Mobile has literally opened up a world options.  It has also become a part of me that tends to grab a lot of attention.  At first it bothered me because it represented all of my impairments, but over time I’ve learned to accept it.   Anyways, being “cooped up” gives me more time to think/ plan stuff.  hee hee hee… Got some stuff in the works, stay tuned…

Earlier this week, a good friend from PT school called me out!  It was exactly what I needed to hear. The past few months I have been extremely busy doing MKF stuff that I’ve been neglecting my own personal rehab.  It totally put my priorities in perspective.  Somehow, he talked me into catching a movie after dinner.  I did not anticipate this because I used only my crutches going to the restaurant.  This would mean having to use the crutches to go to the theater in the mall!  I hadn’t tried this before because after prolonged sitting my legs stiffen up and walking becomes difficult.  After a few taunts, I decided to give it a shot.  This was going to be interesting because there were time constraints with walking to the theater (we had 20 minutes to catch the beginning of the movie.)  What I didn’t realize was that there were ~20 minutes of movie previews before the movie started.  I had plenty of time to use the crutches to walk to the theater in the mall, walk to the bathroom in the theater, and walk back to our seats before the movie started!  I was pleasantly surprised!

I had to test this out again.  Last night I went to a Challenged Athletes Foundation fundraiser in Ocean Beach sponsored by students in the San Diego State University Doctor of Physical Therapy Program.  I really wanted to go because:

1. I worked with many of these students in a neuro lab last semester so I wanted to congratulate them and wish them luck entering their clinical affiliations
2. I got to know a few of them at the Charity Kickball Tournament
3. I wanted to meet some people from the Challenged Athletes Foundation

I decided to try attending the event with only the crutches because I was surprised at how well I maneuvered after prolonged sitting at the movies.  I took an uber car down to Ocean Beach.  I hadn’t been there in years by myself.  I do recall going to a couple bars out there when I first moved to San Diego as a young single healthcare professional.  It was a strange feeling going back there knowing that the last time I was out there the circumstances were completely different!  This event was for the students to celebrate, so I didn’t want to intrude on their celebration for too long. My old friend Rosalia is now a professor at SDSU so luckily she was able to give me a ride home early.  Hee hee hee… wow, how things change.

I’ve def got a new FIRE to push myself, but instead of just randomly trying things that I want to do, planning and preparation will be the key to success!  The 2014 Paintball Event is coming up and Comic Con is next week so some exciting stuff is coming up!  Stay tuned!

Earlier this week I had the opportunity to speak at San Diego State University’s Doctor of Physical Therapy program.  I’ve spoken at different Physical Therapy programs all over the United States over the past few years, but this one felt different.  The program at SDSU is only 4 trolley stops away so I have a feeling that I will be visiting there more often.  I lectured at a neurology class for 2nd year students.  Last semester I helped out there at a neurology evaluation lab.  Last month I went up to Loma Linda University to help out with a lab.  I really enjoyed helping out at the lab because I felt like I was giving back to the profession that has served as the foundation for the MKF concept of post treatment “thrivership.”  I wanted to show the students that we don’t just “have a tumor/cancer”, we are “LIVING with a tumor/cancer.”  I think that message can resonate with many groups.  You educate the students that tumors/cancer are not always a death sentence, and that they can educate their patients that people can live productive lives after being diagnosed with these diseases.

Earlier this month I was in Las Vegas for the American Physical Therapy Association’s Combined Sections Meeting. This is is a big conference where PTs/PTAs/students have the opportunity to learn the latest news and clinical techniques in the profession.  I always enjoyed meeting other therapists and vendors at these conferences.  The past few years, I have been attending the Oncology Section programming.  I was formally introduced to the benefits of a post treatment physical rehab program for tumor/cancer patients.  After I did my radiation treatments, I tried to keep physically active because I needed to stay active to keep my sanity.  I now have “Peer-reviewed” evidence that confirms the benefits of a physically active lifestyle for general health benefits after treatment.  In my humble opinion, when done safely, under the supervision of a qualified healthcare professional, the benefits of physical activity (PA) after treatment are too great to ignore!  I have seen many survivors fall into “self-defeating ruts” after treatment.  There are so many benefits to physical activity!

I truly believe that post-treatment exercise programs need to be formed to harness the benefits of physical activity.  Dr. Steven W. Morris at St. Jude’s Pediatric Research Hospital in Memphis, Tennessee has presented numerous in-services/seminars addressing the benefits of physical activity for post-treatment cancer patients.  I was lucky enough to present his findings at a young adult survivor event in San Francisco a couple years ago!  I think young adult survivors turned “post treatment thrivers” are in a prime position to become the leaders in the promotion of a physically active lifestyle after treatment!  We are the ones with all the potential and the loudest voices.  Throughout history, revolutions are propagated by young people who realized there needed to be some sort of change.  This is a prime opportunity for Generation X and Generation Y to create our legacy!  The change in society starts on an individual level before it can catch fire.  If we truly commit to a healthier lifestyle, we should see changes in the prevalence of these diseases!  The trick is getting the under represented populations to follow suit.