CTCA Blogger Summit 2013

I visited Cancer Treatment Centers of America (CTCA) a year ago for their first ever bloggers summit. My initiative at the summit was to learn about CTCA in general. How their hospital ran, what kind of innovative technology they used, targeted research trials, and learn about why they think patients should pick their standard of care. I emerged with a keen understanding that CTCA’s patients come first, and their cancer second. CTCA emphasizes a team approach in regards to treating the whole person, not just their cancer.

This year I’ll focus more on the similarities and differences between CTCA, MD Anderson, Johns Hopkins, and UCSF. Although I do not have a personal perspective as a patient at CTCA like I do with the other three hospitals, I’ll do my best to provide a fair analysis based on what their patient panels have to say. Many people have asked me why I did not seek an opinion from CTCA when searching for a neurosurgeon over the summer, and there are two straightforward answers. The first being that CTCA treats patients 18+, and I am just shy of 18. Secondly, CTCA is known for treating later staged cancers, and my brain tumor was still “low grade” (grade II).

Join us at the conference by watching from home: http://ctca.cancercenter.com/western-blogger-summit/

OR

If you’re looking for updates on and off throughout the day, keep an eye on my Twitter page! @Cblotner_

Check out the event schedule:

 

An Open Letter to Katherine Schwartz

My doctors rock.  Not just because they're experts in my disease and not just because they're some of the smartest people I know who work at one of the very best facilities in the entire world.  They rock because they care.  They're human and they show it.  Recently, my Oncologist's Physician's Assistant, Katherine Schwartz, was nominated for a prestigious award and I had the privilege of writing a letter of recommendation for her.  I was floored and thrilled beyond anything that I was asked and even more excited to let her know how much she meant to me.

I want to share this letter because it's so important to me that the world knows just how much my doctors affect my life.  At times, they give me the kind of news that no one wants to hear and no one wants to deliver.  They do this with kindness and professionalism and sometimes with tears in their eyes.  They hand me the worst of the worst in the most gentle way possible and I can't imagine how it makes them feel to have to have to do this. I love them because they're not just doctors; they're human.   I'll forever appreciate the work that they do.  I'm so fortunate to have the opportunity to be able to tell them on a regular basis and I'm even more fortunate to have been able to put my appreciation in writing  for the fabulous Katherine Schwartz.

Below is the letter that I wrote for Katherine.

Dear Selection Committee:

My name is Becky and I am living with a rare form of thyroid cancer that currently has no systemic cure.   I live in Florida, but I travel to MD Anderson Cancer Center in Houston, TX so I can be treated by an expert that specializes in my disease.  While I definitely don’t look forward to my follow-ups and wish they weren’t a part of my life, I don’t ever mind going to the doctor because I am fortunate enough to receive top of the line care with the most amazing doctors and professionals in the entire world.  One of those professionals is Katherine Schwartz in the department of surgical oncology.  She is an incredible human being.

I met Katherine immediately before my first biopsy and she was one of the first people that I spoke with after that same biopsy reassured me that, yes, I had cancer.  She was a breath of fresh air in the middle of the dreariness of cancerland.

 When I was diagnosed , I felt like my heart was going to beat right out of my chest and my  soul hurt so badly that I didn’t think I would ever breathe normally again. I was scared and feeling like no one in the world could possibly understand the madness that I was experiencing.  It was Katherine who pulled me through that.   Katherine explained things in detail and on my level and with a kindness that only an exceptional individual like her could display.  She personally read every single scan result to me over the phone.  She reviewed every last detail of each finding, test result, poke and prod.  And when I cried, she gave me a million reasons why everything was going to work out.  Katherine doesn’t only treat my medical condition; she treats the ache in my soul when I need it the most.  Katherine makes the tough stuff a little bit easier to swallow.  That to me is invaluable.

I often find myself explaining my situation to doctors over and over again and for the most part, I end up educating them about the ins and outs of my type of cancer.  This is draining and discouraging.   Katherine is better than that.   She is not only incredibly knowledgeable about my disease; she takes the time to get to know Becky the person, rather than just Becky the patient.  She never lets me leave the hospital until she knows I understand everything that has happened and everything that might happen. I leave a conversation with her feeling educated and like I have choices. 

I could write a letter for miles and miles telling you about the fabulous Katherine Schwartz.  I could tell you about my liver scans and how she delivered my news perfectly.  She wasn’t just a medical professional that day.  She was a compassionate human being that cared about my outcome.  I could tell you about the scar on my neck and how Katherine worked extra hard to make sure that I knew how to take good care of it and reassured me that this was just a small detail in the grand scheme of things.  I could tell you about the day I couldn’t stop crying because I thought cancer was going to ruin my life.  Katherine was there then, too and all it took was a conversation with her to help ease my worries.  I could tell you about all of these things and more, but words will never be enough to describe the special qualities Katherine possesses.

 I have to live with cancer and the unknown.  I can’t predict the future and I don’t know what cancer or life is going to throw in my direction.  Knowing that a medical professional like Katherine is by my side makes all of those things a little more tolerable.  Katherine’s job isn’t easy and she doesn’t always get to deliver good news, but I have never seen Katherine without a smile on her face and a way around the cancer obstacles that come in my direction.   I’ll always be appreciative of the care she provides for me because at the end of the day it’s not just medical knowledge that keeps me going, it’s the kindness and authenticity of people like Katherine.

Sincerely,

Rebecca MacKenzie

Cancer survivor and proud patient of Katherine Schwartz

Update on BT Adventures

Today, today, live like you wanna,

Let yesterday burn and throw it in a fire, in a fire, in a fire,

Live like a Warrior

Matisyahu, Live Like a Warrior

Spark Seeker, 2012

There have been so many developments in the past couple of weeks that I found it easier to sit down for a few minutes and record the following videos rather than type everything all out. I had a great visit with MD Anderson last week and loved the comfortable atmosphere that they nurtured as well as their proton beam (who eerily resembled characters from the TV show House,) but learned that I cannot use their proton beam radiation machine without an open biopsy to determine the exact cell type of my tumor; and, due to its location, the open biopsy would equate to almost a complete resection of the tumor anyways. Assuming that at least 80% of the tumor was removed, proton beam radiation would be rendered pretty much needless after the biopsy/surgery. The MD Anderson visit made my decision a bit easier because they eliminated the options of what to do, and narrowed the decision down to who/where do I want to put my life on the line. I will definitely revisit the proton beam option down the road if there is a reoccurrence or determination of its necessity.

After consideration of time constraints, my level of confidence in facilities, coordinating appointments, and the experience levels for the insular region of all of the centers I visited, I have chosen a doctor at the University of California San Francisco (UCSF) to perform my craniotomy, which will take place on September 4, 2012.

This first video details my initial diagnosis of a brain tumor in 2007 over the course of the past five years up until today, as I approach a craniotomy in upcoming weeks.

This second video explains the expectations and possible outcomes of my craniotomy

Teen Heads Up Conference 2012 at Camp Mak-A-Dream

Ahh, Home,

Let me come Home

Home is whenever I’m with you

 Edward Sharpe & The Magnetic Zeroes, Home

Up From Below, 2009

I can't even begin to accurately describe the best week of my life. I spent it at the 3rd Teen Heads Up Conference which was sponsored by the Children’s Brain Tumor Foundation and hosted at Camp Mak-A-Dream in Montana. This conference was created for teenage survivors of brain tumors/cancer. Participants from previous years said it best: words can't explain the experience - you have to be there.

Participants ranged from ages 13 to 18, and mentors + volunteers were predominantly in their 20s and 30s. The presence of mentors was probably the most valuable part of this conference because they helped show us what lies ahead: a future. There is always hope. We woke up and saw it in each others' eyes every day.

There were "camp activities" like a sports and recreation outdoor area with a put-put course, volleyball court, basketball court, and endless fields. Activities included spending time on a zip line, high ropes course, being creative in the art barn, trying your hand at archery, and hiking up "The Beaut." I hiked “The Beaut” twice..once around sunrise on the third morning, and once around sunset on the last night. I couldn't think of a more beautiful way to spend my last night in Montana than sitting atop a mountain, taking in the night sky, surrounding mountains, light breeze, and a full moon in the background. Breakout sessions and workshops included touching on the topics of: dating (where my CBTF guest blog was highlighted), social cues, the high school to college transition for brain tumor/cancer survivors, short and long-term impacts of treatment.

Three of my cabin-mates are going to be high school seniors like me, and another just graduated high school. Close in age with similar interests, we all had an instant connection. After only a half hour of knowing each other, we were already laughing, hugging up a storm, and sharing our stories on the bus. It just so happens that one of my cabin-mates lives in Houston, so we're going to meet up this week while I'm there for my MD Anderson proton beam consultation! Another cabin-mate noted that although we have only known each other for about a week, it feels like we know each other better than those we have known for over a dozen years. Plain and simple: everyone at Camp Mak-A-Dream knows what it's like to be a mAss Kicker, to overcome obstacles, to reevaluate life, and to challenge oneself.

Quite a few of the mentors were diagnosed in their junior or senior year of high school, a perfect match for the time frame of my recent re-diagnosis. One particular mentor stood out to me with her spirit and resolve. She was diagnosed at 16 and missed over a year of high school, but was determined to graduate on time with her class. After spending three straight months unable to leave the hospital after surgery and relearning how to walk, she graduated on time, finishing 2.5 years of school in ONE year! She pushed herself as she possibly could, taking extra classes, studying more than everyone else, and proving that as survivors, we are so much more than a diagnosis.

High school and college students diagnosed with cancer have to reevaluate their goals and accept the loss of abilities and dreams, whether those be physical, mental, or emotional. Some of the long term side effects of chemo and radiation include vision, hearing, and memory difficulties; entering the work force with the "new you" requires a reassessment of goals and career choices.

What you can't explain about this trip are the people. We are so much more than survivors..we are athletes, musicians, aspiring film makers, accountants, educators, etc...we cannot be defined or held back by a diagnosis. No one aspires to join the brain tumor club, but its members possess the highest possible levels of bravery and tenacity.

EEG Shenanigans

Hope - I just need a ray of that
'Cause no one sees my vision when I play it for 'em

Dr. Dre (feat. Eminem and Skylar Grey), I Need a Doctor

2010

I spent Monday through Thursday this week at Harper University Hospital in Michigan for a continuous EEG/sleep study. The test concluded that either a) my symptoms are not seizures, or b) because the tumor is located so deeply in the insular region, the scalp EEG can’t pick up the signals. The findings won’t really affect how I decide to treat my tumor, but they might have an impact on seizure medication that I’m taking. I might stop taking Keppra, which I have been on for the past three years; Keppra has greatly reduced my symptoms, but it has never completely gotten rid of them.

Here’s a description of this week in the hospital:

Currently, the doctor decisions are all tied up at 1-1-1 with 3 different opinions:

Karmanos DMC: surgery

Johns Hopkins: watch and wait

Mayo Clinic: surgery is too risky; opt for radiation/chemotherapy

UCSF: will hear back next week

MD Anderson/Dana Farber: still deciding about contacting them

I recorded these videos on Wednesday night when a few friends came to the hospital to visit me..they dressed up in scrubs and managed to stay past visiting hours because they were dressed like nurses/doctors. They put on a little dance show for me and we attempted to make a music video for Eminem’s song “I Need a Doctor”..this is what friends are for!

MD Anderson Brain Tumor Conference May 2011