Greetings Friends and Family,
To say May has been a busy month is quite an
understatement, which explains why this note is so lengthy. My third diagnosis
of brain cancer has led to big, unexpected changes for the Kelly
Family. Though we would much rather not be dealing with a third cancer diagnosis
and the mess it creates, we are hanging in there and looking forward to some
awesomeness among all the muck. A few things cancer couldn’t mess with: Alex’s
9th birthday, Mother’s Day, a May snowstorm, end of the school year activities, date
night with Erin, and my courage in the face of adversity.
First, I’ll update you on my health. There is a lot
to tell, so I’ll rewind a bit. I had brain surgery on Monday, May 1st and learned
that same day cancer was back. Needless to say, my family and I were devastated
that this diagnosis resurfaced for a third time. Three
bits of good news amidst the bad were that pathology revealed it was the same type
of tumor I’ve had twice before: Medulloblastoma. This is good because it wasn’t a
different, more aggressive type of brain cancer. The second positive outcome
from surgery was that my neuro-surgeon removed the entire tumor (a.k.a. total
resection). The third, and the most important bit of good news post-surgery was
that as soon as I woke up from anesthesia my cognitive and neurological
abilities were all intact. I was/am still Sareana!
The day after surgery, May 2nd, I was discharged from
the hospital. Sounds quick, but part of the health professionals’ reasoning is
to get a patient up and about and out of the hospital (where many germs reside)
and see how he/she does on the “outside.” So, I walked away with hardcore pain
killers and detailed instructions on how to care for my incision. The incision
instructions were important because it is the area most susceptible to infection,
which is very serious. My incision is rather significant and strangely enough
in the shape of a big question mark. Why? Well, they needed to
make a longer cut than my two previous surgeries based on where the tumor, or what
we had hoped was only scar tissue, was located. I’d post a picture of the back
of my head, but I’d rather you just use your imagination. It’s not for
everyone. However, to my surprise Alex and Dean have proven not to be unnerved one
bit by the back of their mom’s gruesome-looking bald head. In fact, they have
even taken to arguing about who gets to clean my incision with peroxide each
day until stitches are removed! Alex and Dean are remarkable human beings. Future Dr. Kellys perhaps?!?!
The first two weeks post-surgery
were spent taking it easy at home. Restful sleep sounds like it would be a big
part of that recipe, but lying down was (and still is) my most uncomfortable position
to be in. At first my neck muscles were so sore and weak that I needed help
lifting my head to get out of bed. I can’t lie on my back comfortably because that
is directly where my incision and prickly stitches are located, rolling over to
my left meets more stitches and discomfort because of the pressure on the area of my brain that is trying to heal. The right side of my head has also proven to be tricky to
sleep on because of hip discomfort (there’s not a whole lot of “meat” on my
bones right now). To cap it off, lying on my stomach is off limits due to neck pain.
Plain and simple, it’s hard to get comfortable no matter how many pillows get
involved. I wish it was possible to sleep standing up! After rereading this
paragraph, my description, though accurate, actually sounds a lot worse on
paper. I’m hoping next week when my stitches are removed, that restful sleep resumes.
Nothing I can’t handle.
At the end of Week Two post-surgery I had a spinal tap
(a.k.a. Lumbar Puncture or LP) to determine if any cancer cells had metastasized
to my spine. Fortunately, the risky procedure went smoothly and I didn’t suffer
from a painful spinal headache, which is a possible side effect I experienced
in 2008. More importantly, the LP results were negative= no cancer in my spine!
Week Three post-surgery (this week), I began the first of
two treatment phases designed by my neuro-oncologist at Duke. I am taking a daily
chemotherapy pill. So far, I’m
tolerating it well. I stress “so far” because I’m well-aware that four days is not enough time to determine how I'll manage long-term. I’m slated to take this daily dose of
chemotherapy for six months. The second part of my therapy involves a
monoclonal antibody (a fancy way of saying “targeted” cancer therapy). This
comes in the form of a 30-minute infusion that I’ll receive every fifteen days at
the local cancer center. To summarize, my combined therapies will be a daily dose
of chemo in the form of a pill and an IV infusion of a monoclonal antibody
twice a month. Both therapies are planned for a total of six months, but I take
this timeline with a grain of salt knowing that it is dependent on how I’m
tolerating the therapies. In addition, a new therapy could be introduced at any
time, which is left up to the experts.
As if all the above paragraphs about my health weren’t enough information,
there are a myriad of other things going on in our lives. The biggest and greatest piece of news to share is that we’re moving to
Portland, Oregon in July! We not only bought
a house in Portland last week, but we also sold
our house in Fort Collins on the very same day! The markets are rather hot in
both places and we have Nicola and my brother-in-law, Dave, to thank for
helping make the purchase of our new home from afar a success! We toured our
new home via Zillow and FaceTime—not ideal, but these are not ideal
circumstances.
There’s no doubt we wouldn’t be moving to Portland (at least
not so soon) if I hadn’t received a third brain cancer diagnosis this month. It
makes me terribly sad to leave beautiful, sunny Colorado, our friends and
neighbors, the access to outdoor awesomeness from our driveway, the boys’
school, my sister-in-law’s family, the school where I worked so hard to
establish myself as a teacher again. But alas our family’s way of life has been
interrupted abruptly and turned upside down by cancer once again. It’s nothing
Erin and I haven’t weathered before in the last nine years; it was tough the
first two times, but this third recurrence has put an even darker cloud over my
unknown prognosis. I’m most broken-hearted for Erin and my boys. I’ve wiped
away an endless stream of tears the past several weeks, but the fact is that I’m
still here today, so I continue to put one step in front of the other and carry
on the best I can as mother, wife, daughter, sister, and friend. Part of my
ability to breathe fluidly right now is knowing that with this move to Portland,
Erin and my boys will be taken care of no matter what. Living close to my
sister and Dave brings calm to the beating of my heavy heart. My sister’s
children and my boys will attend the same elementary school and we are
returning to a familiar city and neighborhood that we love and know so well.
Aside from living closer to my sweet sister’s family,
another positive of moving to Oregon relates to Erin’s job. Living in Portland
will significantly decrease the amount of time he commutes to his pilot base in
San Francisco (where he starts and ends each trip). And the hope is that
someday he’ll even be based in Portland, which would be a benefit to all of us
because he’d be able to spend more time at home and less time commuting, plus it would be a huge benefit to his overall wellness. I must add here that I may be tough and resilient, but that my dear husband
has those same inherent characteristics. Erin has endured so much over the
years because of my poor health status, but he has never wavered or given up on
me. He has the great responsibility of being a dad, a husband, a caretaker and
all while being the sole provider for our family. From the outside I imagine
our situation could be viewed as unfortunate, unimaginable, and unfair; from
the inside, it feels unfortunate, unimaginable and unfair, but not always. Cancer
has given Erin and me a unique perspective on the power of love and commitment not
only to each other, but to our children in the face of uncontrollable circumstances.
It has forced us to appreciate each day we have together. I’ll always be
grateful for that chapter in our love story.
I’d also like to publicly post a special thank you to my mom
and dad who are a remarkable example of what parental love and support looks
like throughout a child’s entire life.
Thank you for reading this long note and for your continued
thoughts and prayers. I hope you and your family are well wherever you may be.
Love,
Sareana
P.S.: My next post will likely be after we are settled in
Portland at the end of the summer.
Erin, Dean and the Cub (future pilot? yes.)
Dean and Alex's last day of school, May 26, 2017
(future doctors? maybe:)
