Radiosurgery: Day 5

Hello Friends and Family,

Greetings from Durham, North Carolina! During my fifth treatment today, I thought a lot about the significance of the word "half." I tried to come up with as many halves as I could think of:
1/2 mile, 1/2 cup, 1/2 gallon, half b-day, 1/2 a dose, half the cost, 1/2 cheese-1/2 pepperoni, half & half, 1/2 caff, 1/2 marathon, 1/2 circle, 50%, half ass, 1/2 portion, half mast, 2\1, halfway there!

Sometimes half is just enough, but in my current situation, the second half is just as important as the first. My next five treatments won't be any easier, but reaching the midpoint is still a significant accomplishment! I'm happy this week's treatment regimen is over and the side effects have been minimal aside from digestive track discomfort. Compared to last time I received radiation, that's nothing! I've been eating well, gone on long walks, been out and about breathing fresh, humid air as much as possible.

My sweet mom, who went above and beyond this week, just departed and an old friend from my study abroad experience in college will come in for the weekend. It is so nice to have all of this amazing support. I also had a dear friend from my summer camping days visit for the night, and had lunch with family members who I haven't seen in decades. Suffice it to say, I feel the love. Next week, my BFF from high school will visit for a night then my "other half" comes in on Tuesday. I've heard some great stories from Erin this week regarding his Mr. Mom duties, and sounds like he has everything under control. I get the feeling the boys are loving their time without any girls around!

Thank you for your continued thoughts and prayers.

Love, Sareana

Radiosurgery: Day 1

Hello Friends and Family,

My mom and I have settled in nicely to our temporary digs. We are staying in an apartment complex that has both short and long-term rentals, which means we have our own kitchen plus a separate sleeping and hang-out space. We walked to Whole Foods to stock up our fridge with healthy items, but the only problem is I accidentally led us astray on the return trip, so we put some extra mileage on our shoes. Not such a bad thing except we were carrying lots of groceries in 80+ degree heat with high humidity. What an adventure already...we had a good laugh!

My first day of radiosurgery went smoothly. During the session I thought about the irony that I should begin cancer treatment in the very moment Alex was standing at the bus stop waiting to get picked up for his first day of school. This would have also been the exact same moment I would have welcomed students into my classroom for the first time at a different school on the other side of town. With my eyes closed, I could feel the energy and excitement that goes in to this special day for a child and a teacher. It was not a sad moment for me, but one of acceptance. I'm okay. This is where I need to be. Today, my job is to get 'er done! One down, nine to go...

Have a lovely week,
Sareana

Part of a Plan

Last Saturday night, Erin took me to a concert at Red Rocks Amphitheater outside Boulder, Colorado. This impressive venue sits embedded in the natural red rock and is incredibly unique and beautiful. Those two adjectives also describe the voice of our favorite music artist, Brandi Carlile, who performed with her band. Erin bought tickets to this concert months ago and he planned on surprising me for our 12^th anniversary, which is on August 23. After my June MRI, he told me about the concert and said he wanted it to be a surprise, but didn’t think we’d be able to attend given the hurricane forming around us. Thankfully, it worked out. If you’d like to take a listen, here’s a link to one of the songs on her new album called “The Eye:”

https://www.youtube.com/watch?v=Wl_eNu4NUVI

On Tuesday, August 11, Erin and I boarded a plane for Raleigh/Durham, North Carolina with tiny parts of my tumor in Erin’s carry-on. That’s right, we hand-delivered my tumor block (paraffin-embedded tissue samples) to a well-regarded neuro oncologist at Duke University. Erin guarded his carry-on as if he were carrying contraband and I, personally, found it odd to be sitting next to my tumor on the plane. The night before we left for NC I had an MRI, which came back without any enhancements, meaning no recurrence was detected since my July 10 surgery. Due to the fact that we have spent a great deal of time this summer researching treatment options, it became apparent that a more recent MRI was needed to serve as a baseline. Needless to say, I was relieved to know that we are still working with a “clean slate.”

While at Duke, we had appointments with both a neuro oncologist and a radiation oncologist, both of whom are collaborating to come up with the best possible treatment plan regarding radiation and chemotherapy. Sometimes radiation is administered before chemo, in other instances that is reversed, and sometimes they are given concurrently. Or a patient might only receive chemo or radiation alone. In 2009, I received 30 sessions of radiation to my head and spine over a six-week period without any chemotherapy. That will not be the case this time around. Certain cancers come with a set protocol, or “standard of care.” However, in my rare circumstance there are no set protocols; there weren’t any in 2009 and there still aren’t any in 2015. For one, I am an adult with a common childhood cancer, so there is not much data on how to treat adults with medulloblastoma, whereas there is a standard of care for children. To further complicate matters, pathology reports from 2015 have not been consistent.

Our first appointment at Duke was with a neuro oncologist who said, “I need more information” before he could prescribe a chemotherapy regimen. Further analyses of my tumor are currently taking place on two fronts:  “molecular subtyping” and “genomic testing." Molecular subtyping will be able to define medulloblastoma in one of four subtypes. Depending on which of these subtypes my tumor falls under, there is a possibility that there may be a particular drug or immunotherapy agent that targets a specific pathway to block cancer cells from propagating.  (Of note, this type of testing was not available in 2009, as it has only been in the last 5 years or so that they have discovered the four subtypes of medulloblastoma). Genomic testing, on the other hand, is different in that it is more specific to my DNA and the DNA of the tumor.  Duke, in particular, wants this information to see if we can tailor a therapy based on both the molecular subtyping and genomic testing. Because it can take weeks for results from both of these tests, doctors on all fronts agree we need to proceed with some type of treatment, and they all recommend some form of radiation.

We were impressed with the people at Duke and comfortable with their initial plan, so I will be going there for the first phase of treatment.  The radiation I will be receiving is called stereotactic radiosurgery.  Radiosurgery does not actually involve any type of invasive surgery. It is a form of specialized radiation that can target a specific area with extreme precision. I am scheduled for ten 20-minute sessions of cranial radiosurgery, one per weekday, beginning August 24 and ending September 4. My mom has arranged for lodging and will be with me the first week, while Erin stays home with the boys. Then they will flip flop and Erin will join me in North Carolina and my parents will take care of Alex and Dean. During this time, I also expect some good friends to visit, which will be a very nice distraction! My radiosurgery treatment will be done in conjunction with an oral form of chemotherapy. This pill is used as a radiosensitizer, which basically allows the radiation to a better job. According to doctors, side effects are reported to be relatively mild and I’m hopeful that’s true. I have a feeling the 20-minute session itself will be the hardest part of my day. The hardest part of my week will be missing my boys. No matter what, it’s good that part of a plan has begun to form.

There is quite a bit of preparation on the part of the doctor and the patient to get ready for radiation. A radiation oncologist determines the precise location in which the radiation beams will target my tumor bed (this involves the radiation oncologist, a physicist, the neuro oncologist, and a lot of other people with a great deal of technical expertise).  I went in while we were at Duke for yet another MRI that gives them a template for the specific areas to target, then went through a “simulation,” in which they mold a mask for radiation itself.  The mask forms tightly around my head both on the back and front, and the mask is then attached rigidly to a table, so that radiation beams can be delivered with utmost accuracy (I had a mask made in 2009 as well). It is extremely uncomfortable and claustrophobic. The making of the mask takes a lot of calming breaths and inner-strength, as does the treatment itself. This is where my mantra to “breathe, just breathe” is very useful. I’ve attached a link from the UC Brain Tumor Center website in Cincinnati. Though I’m not receiving my care there, I believe the website and videos do a good job describing radiosurgery and how the mask is made. If you’re interested, here’s the link:

http://ucbraintumorcenter.com/stereotactic-radiosurgery/

In one of our recent appointments, the nurse joked that I looked so healthy she couldn’t tell who the patient was, Erin or me. She also said that the two of us could possibly earn honorary doctorate degrees given the amount of information we’ve learned this summer about cancer. I am proud of the work that Erin and I have done over the past two months, it has taken its toll in terms of our energy levels and emotional capacity, but we still made room for fun. I can’t say it’s been a good summer overall, but Erin and I have shared many special moments together that would not have otherwise happened. He’s simply the best! My boys have gotten a chance to spend quality time with both sets of grandparents, aunts, uncles, and cousins. They are as happy and full of life as ever! Somehow we’ve all managed to stay in the eye of this hurricane.

Love,

Sareana

P.S. Dean asked me today, “Mom, why do people cry when they love someone?” I couldn’t respond without crying, so I went out on the back porch to have a good cry. Alex and Dean followed me outside and said that they could do a hoola-hoop show for me to make me feel better...it workedJ

Pathology

I’m an observer, I always have been. I especially like observing people. And there’s no better place to do that than on the subway in Washington DC. Erin and I just returned on Friday to Fort Collins from a trip to the National Cancer Institute in Bethesda, MD. After our meeting with a highly reputable neuro oncologist, Erin I decided to enjoy ourselves and leave behind any heavy thoughts of the day. We took the Metro to the nation’s capital. Erin grew up and went to college in these parts, so I had a trustworthy tour guide. We walked down the National Mall, but we didn’t have time to enter any of the impressive, gratis museums that line its path. So, instead we strolled toward the Washington Monument with the U.S Capitol building at our backs. Though I’ve been to DC before and been amazed by its foreboding architecture, it is in stark contrast to the modest and quiet, northern Colorado town in which I reside, where the tallest structure is a seven story bank building. Car horns can be heard honking at every intersection in DC, whereas the blaring sound of a diesel engine rumbling down the train tracks is the norm in these small town parts. There’s no better place than a big city to feel small: to blend into a crowd, to be crowded by thoughts other than those that pertain to the events going on in one's own life. To observe people out living it, living life, this is what I love.

Over the past month, since the pathology report came out, I’ve contemplated my own life and my place in the world quite a bit. The possibility of a life shortened by cancer has been staring me in the face. This summer has been one of sadness, fear, stress, confusion, and frustration for my whole family, but particularly for Erin and me. I turned 39 on July 31, there was no big party, but a celebration nonetheless. Since not being happy doesn’t jibe with my cheerful personality, I’m trying to stay upbeat, but even that can be trying at times. I held off on writing about specifics of my diagnosis because it was unclear to doctors and me what type of tumor they removed. Unlike 2008, when pathology could unequivocally identify my brain tumor as medulloblastoma, this recent tumor has proven to be much harder to diagnose. 

About a week after my surgery in July I was told my tumor was a radiation-induced glioblastoma. You might remember from my previous blog that radiation itself has a rare side effect whereby a new tumor can metastasize in the area where one has been radiated, which is what apparently happened to me. The regrowth was not medulloblastoma, but instead glioblastoma. My immediate reaction to this news: tears. A glio is the worst of the worst kind of brain cancers with a poor prognosis. It’s quite aggressive, grows quickly with an average time period for recurrence of 10 months regardless of treatment. Suddenly, there was little room for the “stay positive” voice inside my head. However, glio, like other cancers can be treated. So, therein began our search for the best possible treatment for glioblastoma.

With this new information Erin and I met with the same radiation oncologist and neuro oncologist that we had met with prior to my surgery in Denver. When pressed for absolute confidence in their diagnosis, they confirmed pathology and discussed ways in which to proceed. Let me pause here to mention that from the onset, regardless of the pathology results, we were planning on getting multiple opinions for treatment options. Also, important to note is that my neuro oncologist in Portland was flabbergasted with this finding and thought it puzzling; he needed to literally see the tumor slides to believe it. (A tumor slide is a sample of tumor that they look at under the microscope). Another neuro oncologist friend of my uncle’s responded incredulously that he’d never heard of this type of recurrence in his thirty-year career. Strangely enough, their reactions of disbelief made me feel better…it gave me hope that CU pathology might be wrong. Now more than ever we needed second opinions. Unfortunately, after getting all of the proper information to a doctor at UCSF in California, she concurred over a phone consultation with CU’s diagnosis. Not what we wanted to hear, but now we had two different doctors and their tumor board teams suggesting it is a glio. My hope was fading, but we remained persistent, we needed more second opinions. Interesting to note here that neither CU nor UCSF requested pathology from 2008 to compare to 2015.

Our new mission (and my uncle’s) was to seek out more opinions from the experts in the pathology and neuro oncology fields across the country. One thing that complicates the matter further is that I have been a patient at three different hospitals in three different states: Arizona (initial brain surgery and radiation), Oregon (MRI follow-up care), and Colorado (second brain surgery). Getting the requisite MRIs and tumor slides to a number of institutions across the country was no small task, but Erin and I have mastered advocating for my best interest and practicing patience. We have navigated our way through a true labyrinth to gather all the appropriate medical records so that doctors have everything they need to take a look at my rare case on paper and under a microscope. Erin, “my chief of staff,” will tell you firsthand that this has been a bear of a project, but well worth the time, energy and effort if it meant, as he put it so eloquently, “you can stick around longer.” Turned out our hard work paid off as we heard some great news from the NCI expert last Thursday: my tumor is a medulloblastoma, not a glioblastoma! There is some irony calling it “great news,” but Erin and I were literally high-fiving over this new development. We were happy because the prognosis for a medulloblastoma recurrence is significantly better than that of a glioblastoma.

So, how could CU get it so wrong? Here’s where things get a little complicated, so if I lose you, I’m sorry! There are a few reasons that explain why there was such a huge discrepancy between CU and NCI. First, at NCI they dug deeper into my health history by comparing pathology from 2008 and 2015. Second, the tumor that was removed in July actually had two parts to it, which made pathology very complex. One part was intracranio (inside my brain), this was clearly medulloblastoma, however, the part of the tumor on the surface (in the tumor bed of my cerebellum) had grade IV astrocytomic characteristics (i.e. glio), which led CU to believe it was a glioblastoma. To further cement NCI’s diagnosis was another top pathologist at Johns Hopkins who concurred with NCI. Moving forward, Erin and I feel confident that the experts are correct. Now our quest to find the best possible treatment for medulloblastoma begins. We know what NCI would propose, and this week Erin and I will return to the east coast to see what they have to say at Duke Medical Center in North Carolina. Incidentally, NCI has been in touch with CU’s neuro oncology team, and now all parties concur with NCI’s diagnosis.

Though CU’s diagnosis put me on an emotional roller coaster and we’re now a few weeks behind schedule in figuring out a treatment plan for adult medulloblastoma recurrence, I feel very fortunate that we have the resources and support (both tangible and intangible) to be able to seek out second opinions and be active participants in my health care. I appreciated this comment from the nurse at NCI in a post-appointment email: “You two are doing an incredible, respectable job navigating through this!!!”

Over the past four weeks I’ve become more introspective, feeling a bit like I’m in no man’s land, a bit lost. However, I’ve never lost sight of the fact that I’m still Dean and Alex’s mom. In a way, this delay in treatment has been a positive thing because it has allowed me to have additional time with my boys this summer to feel “normal.”   When we returned from DC, Dean asked me, “Mom, did you get your medicine?” Throughout this process, the two people I love observing the most are my boys and their innocence in all of this.

Love,

Sareana