World Cancer Day!
So much life has happened since the last update so it’s taken me
a little while to try to organize all of my thoughts and feelings about all of
it. The world we are currently living in is insane. There is no other word to
describe it. It’s so clear that we are all dealing with the stress of the pandemic
and all that has come along with it. Fatigue, anxiety, depressed mood,
financial worries, employment instability, fear of disease for ourselves and
loved ones, facing our own mortality. All of this is so much to process and
cope with alone, and that’s piled on top of whatever circumstances life had
already dealt you. Those that feel and believe in the true burdens of this
pandemic are suffering, and the end is still not in sight.
For
me and my family, life pre-pandemic was far from stress free, but things were
stable and my health was very much on track with little doubt about my fate. We
were all stable and safe in all the ways that matter. Enter COVID. New fears
arise. My job exposes me to possible infection daily. And I began to become a
part of the team rehabilitating those recovering from it, increasing the
anxiety and preoccupation with contracting it. Am I high risk? Am I still
vulnerable? Would my history make the journey harder? Will I bring this home to
my husband, my parents, and my extended family? And so on. And then, there it
was, like a punch to the chest, something that felt so avoidable yet inevitable
at the same time. The anger, fear, guilt, and widespread impact added to the
stress. Recovery is definitely a marathon with COVID-19. I was able to go back
to work after a few weeks as the primary symptoms subsided, and slowly the
shortness of breath walking down the hall and the daily fatigue subsided.
However, certain aspects have lingered on. My energy levels are improving month
by month, but the fatigue and mental fogginess when I have a long or stressful
week, (which, let’s be real, is all of them these days), is a real frustration.
There are days when I come home and can’t carry on a conversation with my
husband until I sleep. I put the coffee mug in the Keurig upside down and leave
food in the oven passed the timer. I have to re-watch the same episode of Ozark
twice because I can’t keep my eyes open. When it comes to my to-do lists, if
it’s not written down, I will not remember to do it. Aside from falling asleep
watching tv, none of this is me. This is COVID recovery and it is infuriating,
and preventable if people would stop being so selfish and ignorant.
As
time goes on and science learns more about this virus, I will follow whatever I
am told to do to monitor and prevent further issues, and I will certainly do
everything in my power to prevent a second infection. On that note, I was
eligible and able to receive my first COVID-19 vaccine last month, and it was a
morning full of excitement. I didn’t realize how amazing it would feel to be in
the same room as so many like-minded people all working toward a common goal. I
had some mild side effects, a sore arm, a headache for a day, and a mild rash
on my neck a few days after. The rash is likely due to my limited and damaged
lymph nodes, causing the medication to get “stuck” in there for a little too
long. I will have to return to my lymphedema massage for a few days surrounding
the next dose to try to prevent this. Like many of you, I questioned my plan to
get vaccinated, but after much research from reputable sources, I realized that
mild, short term side effects are worth it to protect myself and my loved ones
moving forward. If any of you have questions or hesitation, please feel free to
reach out and I would be happy to provide you with some resources to help guide
your decision. There is so much fear mongering and misinformation out there,
and you have a right to make your decision based on truth.
Okay,
that’s enough of that, on to the happy news that I know you all came for! I
officially hit the 5 year cancer free mark back in the summer, but because of
the pandemic, many of my appointments were pushed back and rescheduled. So this
is where we are. I had my last set of scans in early January, which all came
back with no concerns. My lungs are not visibly damaged from COVID, I had no
signs of aspiration pneumonia, and my jaw bone is stable and no longer
threatening to die on me from radiation effects (for now anyway). And most
importantly, I am cancer free! I saw my oncologist from Penn, Dr. Lin, via
telehealth last month and I no longer need to follow up with him in the future.
Earlier this week, I made the trip to Philly for an appointment with my ENT,
Dr. Weinstein, and was told he never wants to see me as a patient againJ! I will only have to go
to Philly for 2 physicians: Dr. Cannady, my plastic surgeon, who I will see on
an as needed basis if my speech or swallowing ever decline or my jaw bone
starts to have issues again, and Dr. Zheng, my physical medicine doctor who is
managing my pain and long term rehab needs. I can deal with that! I will also
have access to any oral medicine and cervical experts if I am ever in need due
to the long term changes from radiation.
I
would be lying if I said that all of this has actually sunk in. For so long I
have been praying for this day in the back of my mind, while trying to take
everything moment by moment, to tackle each obstacle as they came, and most
importantly, to continue to live my life in full. Now that it is here, I am a
mix of emotions. Of course, relief that I am considered “cured” is a weight off
my chest, and I can truly say that I am a survivor. I am sad that we can’t
celebrate in the way I have spent the last five years picturing. I want to have
a chance to hug and thank all of the people that got me here, but virtual hugs
and thanks will have to do for now. I am a little disappointed, primarily
because this cancer will always be a part of me, even if it is no longer inside
of me. I will always have a speech impairment, eat slowly, and feel pain. 5
years changes none of that. Most of all though, I feel a massive sense of
pride. I did something that I was told was nearly impossible. 5 years ago I was
told this tumor would take my life, and if it didn’t take my life, it would
take my voice, my ability to enjoy food, my freedom to live without tubes, my
potential as an occupational therapist, and would make me dependent on my
husband and family, rather than allow me to live a full life side by side with
them. While my life is very different from what the plans were before cancer, I
would say that I am thriving despite added challenges. I am married to a man
that loves and supports me every step of the way despite the way this cancer
changed our lives, I am working at a job that I find so much purpose in
(despite the everyday stresses), I can talk (with strategies to make sure I am
understood), I can eat a variety of foods and don’t feel limited outside of
most typical likes and dislikes, I can hike, play with my dogs, spend social
time with family and friends (outside of a global pandemic), and so much more.
I am one of the lucky ones who has been surrounded and lifted up by amazing
physicians, therapists, family, friends, and coworkers who gave me so much
grace and all the time needed to allow to me to succeed and for that I will be
forever grateful. Please know that all of you have a hand in this, and my words
will never be enough to show how much I appreciate your part in my journey.
It
seems appropriate that I am writing this on World Cancer Day, a day meant to raise
awareness of prevention and promote action toward a cancer free future, which
is something I have hoped to contribute to by being open and public about this
journey. I hope I have been able to achieve that and can continue to do so.
So
now what? If I am being honest, I have no clue, probably because I have been moving
forward in all areas of life since day one of my diagnosis. Of course I will
still have medical needs to meet and manage, and I will continue to do so
because those are the cards I have been dealt. Outside of that, I am focused on
doing my part to end this pandemic and begin a new normal that hopefully
involves being able to hug my big sister, have a meal with family and friends,
and visiting my Grandma. Beyond that, take a real vacation with Owen, continue
to develop and grow as an occupational therapist, keep training Marshall in his
therapy dog endeavors so he can come to work with his mom. Write a book? Start
a podcast? I think often of becoming a patient advocate, where my therapy and
cancer world can combine for the benefit of patients like me. What that looks
like I have no idea, but I will stay open to life and hope the rest falls into
place. As for this blog, I will continue to update on life, and maybe
transition it into something different down the line. Only time will tell J!
Once
again, thank you all, for listening and reading when I needed to vent, for
commenting when I needed positive thoughts, for praying, and everything in
between.
“And once the storm is over, you won’t remember how you made
it through, how you managed to survive. You won’t even be sure whether the
storm is really over. But one thing is certain. When you come out of the storm,
you won’t be the same person who walked in. That’s what the storm’s all about.”
–Haruki Murakami
