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 12th
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:”
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:
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
