MRI Findings and Update

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.

Serial Imaging – 4 month MRIs

The visit is the same every time. I head down to ground level and down a fluorescent tunnel you’d usually see at the zoo. I am greeted by the same XXL scrubs. I enter the same empty waiting room. Only twice have there ever been other patients inside. The same desk attendant asks if we know each other from somewhere and I explain that I’ve been there dozens of times before. She remembers and smiles to herself.

I am led to the same 3T MRI chamber. There is a little red chair in the corner for parents to sit if their child needs extra comfort inside the room. The same perfect ear plugs are offered – I use the same brand for test taking. Then, there’s the face cage. It snaps on easily, but not until giving a bit of resistance with its sturdy frame. Sponges are placed through the sides to keep my head locked in. Lulling waves wash over me as the table slides back into the machine. The machine gives off noises louder than Miley Cyrus and her wrecking ball on a construction site. I like the consistency.

I usually fall asleep in the machine quickly but this time was different. I stayed awake the entire time which was a shame. I’m not claustrophobic, but I prefer to sleep through the scans and not have the memory. Another scan added to the collection of dozens.

I collected two copies of the scan afterwards as always. I popped the disc into my computer and everything looked ok. Not bad by any means, just odd. There weren’t any bright white spots, but it just seemed like there was more grey hanging out in the cavity. My last MRI was crystal clear, which is why this one looked kind of strange. Although I see some of the same markers between these two scans, it is very difficult to have two exact images for comparison, especially when they are from two different machines. Not to mention that I’m not a doctor hahah. Who knows, the gray twirls could simply be scar tissue.

The package should arrive at UCSF on Thursday. I should get the results back within the next two weeks.

MRI – What If My Brain Tumor Respawns?

Typical college distractions include struggling with time management and substance abuse. My biggest distraction in college? Waiting to hear if I have a reccurrence.

What would an active college student do upon reoccurrence? From what I’ve heard they would take a year off, start online classes, or eventually just graduate late. Of my friends who are battling reoccurrences, most are still enrolled in college in one way or another.

A reoccurrence would mean starting a whole new life, again.

The thing is, my MRI looks completely fine. Or at least it looks fine to me. The surgical cavity is still pitch black. No new white or bright spots, no new wisps around or within. In fact, this MRI looks better than the last because it doesn’t have an artifact on the scan to scare me. Although the worries might not be warranted, they still exist. Two friends (and fellow cancer survivors!) accompanied me to the appointment yesterday. MRIs are always better with ice cream and friends.

mri

I sent a package with the MRI on a disc and a note enclosed to UCSF today. The package should arrive in San Francisco on Thursday, September 27th. Coincidentally, I was originally diagnosed with a brain tumor sometime between September 25th and the 29th in 2007 (as time goes on have forgotten which exact day it was). I hope to hear back from my doc by October 4th.

Backstory

September 2007:

I started experiencing bilateral tingling and numbness anywhere from my ankles to my cheeks at least four or five days a week. Doctors thought my symptoms were anxiety due to 7th grade. Three months of misdiagnoses including questionable heart studies and diabetes pricks later, an MRI was finally ordered. A brain tumor story was born.

My initial reaction was excitement. The diagnosis meant that there was a reason behind the symptoms I felt. After months of weekend and occasionally week-long hospital visits, it was determined that the tumor was both benign and not life-threatening enough to warrant surgery. Oddly enough, the only information put in laymens terms for my parents and I to take home was that the tumor was on the “front, left side”…nondescript and painfully inaccurate as I would find years later.

2008:

The symptoms were diagnosed as mini focal seizures, and I started anti-seizure drugs. The first, Topamax, gave me hallucinations during math class. It had to go. Then, Keppra entered my life. I went on to live the next five years taking Keppra and napping. All while gloriously somehow foreseeing my eventual brain surgery  *spoiler alert*

2009-2010:

My interest in brain tumor and other cancer related groups skyrocketed. I became fascinated with Facebook groups (the first of which was the Tumors Suck page) to connect with other people “like me” – that is, people living with or survivors of brain tumors. I researched genetic links to various types of brain tumors, but none of the information was helpful for me yet because I knew next to nothing about my tumor. I continued to research regardless of if it was for myself or for others. I had a feeling deep inside that my tumor wouldn’t just go away..that it would eventually need some sort of treatment..

March 2011: ruptured L4 and L5 from a series of tennis injuries..underwent spinal surgery at 16 like a champ. The surgery gave me back an unmeasurable amount of quality of life – I was able to sit for longer than 10 minutes without crying! I was left with some slight nerve damage in my quads but that didn’t matter much, now that I can exercise, watch movies, and sit in a chair at school.

March 2012:

My annual MRI report read “density increased” and it was game on from there. My first thought was: “If the tumor was benign, it wouldn’t grow, so what new density would be showing up?” Technically, that thought was wrong. Benign brain tumors can and a lot definitely do grow! Regardless of my train of thought, a PET scan confirmed that comet tails were shooting out of the tumor and were starting to infiltrate other areas of the brain. I didn’t learn until practically five years after my initial diagnosis where the tumor was actually located: the left insula, located between the frontal and temporal lobes.

September 4, 2012: Awake brain surgery at UCSFImage

I’ll leave the immediate research, traveling, and selection process of my surgeon for another post.