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
