My awake-craniotomy took place 4 years ago today. Things that would have been long-term goals 4 years ago are now just things on my to-do list for this month. Things that I never thought I’d see happen are now daily occurrences, in the best way possible. I got better, but not everyone does. I had a great support system, the financial resources to weigh my options and select my surgeon, and the time to do so. My latest MRI was last month, and everything is still stable. Even so, every day is a tightrope walk of accounting for sleep, taking medication, and managing symptoms. My life wouldn’t be anything like it is now if it wasn’t for this patient experience, and I wouldn’t change it.
Community engagement has always been how I’ve processed. We’re talking about the financial impact of being treated for a brain tumor during tonight’s #btsm chat (6pm PST/9pm EST) – all are welcome to join, share, and learn.
Here’s a video of me giving an update four days after surgery, four years ago for a fun flashback.
I’ve been trying to forget what magazine subscriptions belong to which waiting room offices. I’ve been trying to forget the names of receptionists, and the faces of which technicians blow veins.
I’ve been trying to live a normal college student life.
Well, the music is too loud. The hot yoga classes are too early in the day. And, the excitement over the new (mediocre) Asian cuisine restaurant is overrated.
I filed a maintenance request to fix my bathroom door that had somehow come off its hinges last week. As the custodian’s drill bit whirred and the screws brought the door back to the wall, I remembered. Dr. P’s face came back in focus and he asked me to identify the objects and letters appearing on the screen, pressing the spacebar to set off the thick, mechanical swooshing sound that moved from one picture to the next. I hadn’t seen his face in two or three weeks, and that had been a victory.
We briefly talked about axons, dendrites, synapses, and other basic neuroscience in a class this week. We brushed right on through the PowerPoint slide, not evening mentioning the duties of each lobe and delicate area of the brain. I wanted to pipe up and explain their functions, but I didn’t. The word plasticity was mentioned, and I remembered the sound of Dr. B’s voice. I remember his reassuring response to my questions, reminding me that the brain rewires and relearns.
I’ve been trying to forget, but all I can do is remember.
I have been trying to distance myself from my medical memories and subconscious patterns of reminders over the past month, but life keeps calling myself back to remember. These memories are haunting me, and they mean something. Maybe I’m not ready to forget, or, maybe it’s that I’m not supposed to?
The American Society of Clinical Oncology annual meeting has released its 2014 Social Oncology Report, which details cancer conversations in niche communities, awareness, and pop culture over the past year. Breaking Bad was this year’s top pop culture highlight, naturally. There was a 52% increase in the total number of tweets from 2012 to 2013 at the American Society of Clinical Oncology annual gathering, convincing more and more physicians and researchers that social media matters in the context of cancer.
Waiting room conversations about cancer have migrated to Twitter. The power of hashtags, as detailed by Dr. Matthew Katz, a radiation oncologist, and regular attendee of #btsm chats, takes place on page 13. I am ECSTATIC to announce that #btsm (brain tumor social media) finished SECOND as the most frequently used cancer-related hashtag on Twitter over the past year. This means that people from around the world have been having meaningful conversations about their experience with a brain tumor, research, and more thanks to #btsm connecting them with each other. #btsm chats matter (Join us this Sunday at 7pm PST)! The brain tumor social media movement owes the history of our hashtag to the incomparable #bcsm community (breast cancer social media). Both of these grassroots efforts and communities have brought people together for support and information about their respective diseases at anytime, from anywhere in the world, for FREE. We both win, big time.
“Benign tumors are tumors that cannot spread by invasion or metastasis; hence, they only grow locally. Malignant tumors are tumors that are capable of spreading by invasion and metastasis.” – NIH
By definition, the term “cancer” applies only to malignant tumors. Chemotherapy, craniotomies, radiation, and ports placed for both types of tumors are however the same. The biggest takeaway from this afternoon’s session is that we need to remove the words “benign” and “malignant” from our vocabularies, and step back to look at the patients, not the one word that differentiates them because of a pathology report. Both types of tumors so often have the exact same treatments and effects because of tumor location, not tumor grade. Yet, one word typed in a patient file can shut patients out from any type of potential follow-up care at a cancer center or support group, and leave them ineligible financial aid.
Several non-profit travel aid and health insurance resources were thrown out during the panel as well, and I will post the names with links to all of the resources that I learn about this weekend once the conference wraps up.
A few key quotes from the discussion worth sharing:
- “If you find something [treatment wise] that your doctors aren’t offering, go for it”
- “We need multidisciplinary, comprehensive plans that involve neurosurgeons, radiation oncologists, fertility specialists, etc. working together on behalf of the patient”
- “Finding someone to talk to about your diagnosis is so much better than doing nothing”
- “Patients have the right to know about and have the option to talk to a fertility specialist within 24 hours of their brain tumor diagnosis”
Essentially, be the decider in your care.
We came. We talked. We conquered.
Tomorrow includes three main breakout sessions, and I will be attending a total of six meetings set up throughout the day. You can follow the conference online by searching #OMG2014 on Twitter.
My university is hosting a dance marathon to benefit the children’s hospital downtown.
“What is the Dance Marathon?
The Dance Marathon is an annual event…that raises charitable donations for the children’s hospital. It’s held on February 22. It challenges students to dance for 12hrs straight from 2pm to 2am.
What is the Dance Marathon attempting to do?
The Dance Marathon is about fundraising for a very noble cause, the children’s hospital in a similar fashion as Relay for Life, March of Dimes, etc.”
I saw the posters and signs around campus and was taken aback. I felt cold towards the idea and couldn’t understand why. It was almost as if I felt offended..I probably was..and still low key kind of am. Friends have asked if I signed up or plan on participating in the event this week and I snarkily responded with something along the lines of “I am the kids,” or that I just flat out didn’t like the event. I couldn’t understand why I felt that way, though. It was confusing because the event is after all benefiting a good cause..sick kids. I like helping sick kids – I am and or was a freaking sick kid! So what was wrong? The more I thought about it, the more I realized that the event benefited a bottom line more than it benefited patients at the children’s hospital themselves. From the patient perspective, it makes complete sense. I believe in events that boost patient moral, not ho$pital bottom lines.
I emailed the event coordinator and offered up some suggestions for next year. Never once as a patient at a children’s hospital had I come across a fundraising event that cheered me up. People cheered me up! Although patients will benefit from the programs and innovations funded by donations raised, patients themselves are not directly impacted. A handmade gift like a blanket or a visitor, not a checkbook, made the biggest difference. I feel like the dance marathon will give students the false illusion that they are taking part in an event to benefit patients when all they will be doing is dancing and raising some money here and there. Students could be doing much, much more. If they want to really help kids at the children’s hospital, then they can start by interacting hands-on with the patients themselves. They could take on a patient to mentor..become a pen pal via email..write cards..draw pictures..actually interact with patients. Patients aren’t a reason to dance. I suppose one could argue that dancing all night could be an effort and celebration where people dance for those who can’t or no longer can..but I am choosing to not see the event that way. Healthy people without a chronic illness or personal experience with a patient have to interact patients firsthand to try and grasp the reality of a patient’s life. Sick kids are not a reason to dance. Think about the kids first, and fundraising second. I want people to understand that writing a check or dancing with friends has nothing to do with the actual kids they want to help.
I received a warm response from the event coordinator explaining that the purpose of the event was to unite the student body, and create an event where students could connect [with each other] and participate in a valuable service opportunity. So, I guess students aren’t dancing for the kids after all. They’re dancing for their own conscience.
The report from my neurosurgeon about my latest MRI scan read:
“I wanted to let you know that I reviewed the current scans on Catherine and everything looked stable going back to the first real postoperative scan in June of 2013. Again seen are some signals around the resection cavity which looks stable and either represents gliosis or some residual tumor cells. There is no contrast enhancement so for now we will assume that this is stable and will continue to follow this carefully with serial imaging. Thanks again for allowing me to see the followup films”
My initial reaction was: “ASSUMED stable?! What do you mean ASSUMED stable?!”
I panicked. If something was in the cavity that wasn’t there four months ago, then it had to be bad. Suddenly, I wanted an opinion that covered the other two brain tumor options – chemotherapy, radiation – as well. I wanted a neuro-oncologist. I went into research mode. The last time I went into research mode I selected four neurosurgeons, sent my scans their way, and had a craniotomy. Research mode doesn’t mess around. I located a neuro-oncologist in the area and began writing down dates and times that my schedule would allow for an appointment. I waited on the line while editing one of my papers (typical college stuff). I walked to class writing down the office’s fax number, and I told my Dad what scans and other information to include in the package. I was all in.
And then, I talked to a veteran caregiver. We met a few months back when her daughter and I also met. This mother is more than just a mother. She is a researcher and a fierce advocator for patients everywhere. She doesn’t settle for rescheduling excuses or test result delays. She demands the best for her daughter’s care and for the care of others. We talked about which specialist I should see, who else I should send me results to, her daughter’s reaction to Temodar, and finally, our own analysis of MRIs. She made me realize something huge. If the tumor was back and growing, it wouldn’t infiltrate an empty cavity. It would most likely do just the opposite! It would start attacking tissue, not growing back into a space that had nothing to feed off of. Scar tissue grows into empty cavities (duh). Whoops.
I have the neuro-oncologist’s information handy if I need it now, but all is well again. My next scan will take place in April or May, and I’ll go from there.
My first week of my second semester of college is just about to wrap up. Besides an insensitive professor, semester two is off to a good start.
What are the odds that I would find someone else within a 5 year age range who has undergone brain surgery to remove a brain tumor, and spinal surgery to have a double disc laminectomy just like me?!
Well, an estimated 688,000+ people are living in the United States with a primary brain tumor, and an estimated 600,000 people have back surgery each year. Assuming that those numbers don’t double dip, factoring in age, location etc. our chances of meeting are 1 in (you do the math because I can’t!).
At any rate, we both exist, met, and somehow only live TWO minutes away from each other. Incredible.
Thank you for connecting us, Stupid Cancer.