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
