Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 17

Making Treatment Decisions
STAGE FOUR
with and that I needed to focus on getting
cancer-free. The medical team layered on
with stories of all these people they knew
who survived Hodgkin's, and now had kids.
And not just one hard-obtained IVF child,
but success with a second or third natural
pregnancy. And so, I caved. I had the good
cancer, after all.
Six months of chemo ensued, and thankfully,
it worked. Followed by radiation, my
18th birthday, my high school graduation,
and obtaining my driver's license. Life could
resume. Hello college!
The good cancer was finally gone. Hodgkin's
has an eighty-something percent
five-year survival rate. I was confident I
would be in it. I started college and chugged
along. It was hard, but I got it. I remember
the first time I walked through the quad
and felt the breeze through my little bob
of hair. It was glorious. I still wore my cute
hats, mostly because my head still got cold. I
was studying hard and getting good grades.
But I was also really tired. Every Saturday
I would crash on the couch all afternoon,
and surprisingly still sleep well at night.
But college was stressful, and I literally
went straight from chemo to college, so I
was allowed to nap all Saturday.
Then my three-month scans came up.
On Black Friday morning, I got up super
early and went to the hospital for my scans.
I went back to school on Monday and continued
chugging along toward finals. In
my engineering class, I was working on a
project where we had to build mousetrap
cars and then test their ability to go a certain
distance up a ramp. Word was out that
there was a competition for the best cars, so
hoping for a win, five of us overachievers
used giant cardboard boxes from the science
lab and duct tape and various other
items to build our ramps. And in the middle
of a test, I got a phone call. It was close to
7:00 p.m., so I was surprised, but I instantly
recognized the number of the oncology
unit. I stepped out into the hall, closing the
door slightly behind me. It was Dr. Peters,
my oncology fellow. He was a jovial doctor
who always wore fun cartoon ties since
he worked in the pediatric department.
In his typical manner, he lightheartedly
began by talking about a suspicious spot
on my scan, but how he was sure it wasn't
anything to worry about, and that I should
focus on my final exams. My heart stopped.
I remember looking through the door and
seeing my friends crouched around their
cars, and instantly knowing I wouldn't see
them next semester. I knew I was sick. The
good cancer had not stayed away for long.
Maybe it was never really gone.
The day after my last final, I had a biopsy,
tests, and more. The high success rate that
so many others could enjoy with Hodgkin
lymphoma would not be mine, due to the
late-stage diagnosis. On Christmas Eve in
2012, 108 days after my last treatment, I was
officially diagnosed with relapsed Hodgkin's
lymphoma. Once again, the clock ticked
speedily by. No fertility discussions were
even had prior to starting treatment. More
chemo, an autologous stem cell transplant,
and way more health difficulties than I could
list, but I made it through and I'm still alive.
Follow-ups were had with multiple medical
specialties. One day I was perusing
through one of the online portals, reading
up on the notes from the last specialist's
visit, when a phrase jumped out at me-
primary ovarian failure. There it was, in
black and white. Something no one had the
courage to tell me to my face. I was stunned.
Sure, I didn't have regular cycles, or normal
female hormones anymore, but failure? It
was so final and hurtful. The good cancer
was not supposed to leave me like this. But
stage 4 was crushing yet another dream in
my life. And every year, every month-a
painful absence and a reminder of the discussions
I did not have.
It's almost been 10 years since my initial
diagnosis and I'm grateful for the many
cancer-free years I have been afforded since.
Funny enough, I feel like the longer I'm
cancer-free the more into the cancer world
I want to delve. It took me a while to get to
a place of advocacy, but I'd like to think I'm
well on my way. I was at a survivor clinic
yesterday, and my oncologist was pleased
to see me owning my care. At another visit,
my PCP called me the " quarterback of my
health. " I loved that statement. I am my
own best quarterback. I went to a high-risk
breast clinic, and just got my first mammogram
last week. I follow-up routinely with
endocrinology, ophthalmology, and various
other specialists on my team.
But also, I've begun to take better care of
my mental health. I finally signed-up for
counseling. Seven years overdue, but better
late than never, right? I have participated
in guided yoga sessions and try to be more
mindful of the stress in my life. Those are
the big things, but there's been a few small
things too like caving in and buying a wig
to make myself feel better after my stem
cell transplant, and allowing myself to get
a handicap parking tag, and sometimes
even use it!
The " what ifs " and the tough questions
are real and they are hard. What if I
spoke up sooner about my swollen lymph
nodes? Why didn't I push for fertility preservation?
Why didn't I care more about my
treatment options and long-term side effects?
What if I was more of a " quarterback
for my health " back then? Maybe things
would have been different. Maybe I wouldn't
have relapsed. Maybe I would have more
options with my fertility. Maybe I wouldn't
have so many lingering side effects. Maybe
my lungs wouldn't be damaged from all the
radiation. I will never know.
They say hindsight is 20/20, and we can
always hope to have made better choices.
But our experiences and our guidance as
survivors can hopefully influence others
facing Hodgkin lymphoma to better advocate
for themselves. The first time you
go through treatment matters the most,
so don't leave any stone unturned when
deciding your course of treatment. Get the
second opinion. Ask questions and advocate
for better treatments for yourself. If
fertility matters to you, push for preservation
options. Buy the wig earlier. Release
yourself from the expectations of caring
about what others think. Give yourself time
to grieve the loss of the life that could've
and should've been. Ask for help! Open up
to the support available, and get a therapist
much sooner than I did.
The " what ifs " will never go away and
my life has forever been altered. In the
words of a little girl I met in Paris, " life
is all there is. There isn't anymore. " Keep
believing in yourself and speak up when
you feel it's necessary. l
ELEPHANTSANDTEA.COM
HODGKIN LYMPHOMA ISSUE 2021
17
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Elephants and Tea: Hodgkin Lymphoma Issue 2021

Table of Contents for the Digital Edition of Elephants and Tea: Hodgkin Lymphoma Issue 2021

Contents
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover1
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover2
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 1
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Contents
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 3
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 4
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 5
Elephants and Tea: Hodgkin Lymphoma Issue 2021 - 6
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Elephants and Tea: Hodgkin Lymphoma Issue 2021 - Cover3
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