5 Years! Now what???

5 years! Now what??

For some reason, this has been the most difficult blog post for me to write to date. Not that I don’t have anything to say, we all know the day that happens it’s because I’m six feet under, but more because I haven’t been motivated to sit down and put my thoughts in order. They are jumbled and cloudy, and truthfully I’m exhausted by overthinking the various challenges happening day after day. Not only that, but my concept of time is changing and it seems like I don’t realize how fast things are moving around me with days and months blurring together, the changes in routine are probably to blame for that one. Part of it is also that the past 5 months have been a bit overstimulating and unpredictable thanks to the state of our world so my health has not been in the forefront of my mind, which makes me thankful that something could be placed on the back burner during a time of chaos. Although mainly, I believe my lack motivation is because I have spent the last five years focused so heavily on my health because I had no other choice and these milestones seemed to come so slowly and warranted so much celebration. This one came fast and is heavily shadowed by the current circumstances surrounding me. Don’t get me wrong, I recognize what a massive achievement it is to be five years cancer free, I suppose I am just dealing with the fact that life is still, and will continue to be, forever changed by it.

There is also a part of me that is mad, like many others, that this day can’t be the true celebration I had envisioned because, well, COVID of course 🤷🏻‍♀️. My anger is not at the virus, it’s just doing what it knows to do, it’s at the people in my community that have chosen to go on with life “as normal,” completely unencumbered by the severity of this illness, all at the expense of others who are trying desperately to keep us from drowning, because “masks don’t work” and “I’m not sick so it’s not my problem.” Attitudes and actions like that are the ones that have and will continue to take special moments like weddings, graduations, and yes, cancer anniversary celebrations, away from those who deserve their day, while placing more risk on an already exhausted population of healthcare workers. Believe me, I understand social isolation, boredom, lack of control, it’s all terrible for your mental health (see blog posts from year one if you want a reminder), and there are patients like me who have lived or continue to live that reality each and every day. It’s scary, and easy to submit to at first, but then, slowly but surely we become fatigued by the limits and find it easier and easier to justify our carelessness. That carelessness not only sets us back as a society trying to build some type of safe, new normal; but then devalues the hardship and sacrifice of many others who have worked tirelessly to get us this far. So, if you are still with me I beg you to consider these 3 things: wear a mask; try to swallow the pill that the world doesn’t revolve around you and you alone; social media does not make you an expert so it’s time to learn the science of checking sources. Also, over the course of the last five months I have seen fingers, toes, heels, and noses turn blacker than night and prepare to fall off, I have seen young, healthy people recovering from paralysis and I have seen once independent men become unable to recall where they are or what day it is, all because of COVID 19. That could be you, or your son, or your parent, who suffers the long term impact, so try to remember that the next time you want to complain about wearing a piece of cloth on your face. This is your chance to be on the right side of history and you are squandering it, making life for people like me, a healthcare professional and a patient, so much more difficult. And if reading this is making you feel angry or offended, maybe some self reflection is needed 🤷🏻‍♀️.

I promise I’ll hop off my soapbox now. For those of you that are still with me, here is the latest on the life of Devin. Because of the pandemic my medical needs had all been postponed and rescheduled a few times, but things are finally somewhat back on track. Here’s the low down...

My Oncology visit was unremarkable which is the gold standard in cancer remission ☺️. I am looking, sounding and swallowing as well as he could have hoped. I will see my oncologist in January following one final set of scans and if all is well I will be set free from Dr. Lin. Not that he isn’t wonderful, but getting rid of the oncologist is certainly at the top of any patient’s list. I still need to schedule follow ups with my ENT and plastic surgeons so I am not sure what the plan for them will be yet.

I also saw my primary doctor this month after a battery of tests related to the damage from my radiation treatment. My carotid artery ultrasound and echo of my heart were normal and I’m not currently at a risk of stroke, but this is something we will have to watch forever because I will be prone to plaque build up in the arteries of my neck courtesy of the hardening from radiation. My thyroid is finally functioning at a normal level, but this will also be a constantly changing process. Otherwise I am as healthy as I could hope to be from a general wellness perspective.

Lastly, I have been continuing with the laser treatments on my jaw, head and neck with good results. I still have pain, but the headaches are less often and I no longer clench my jaw with fatigue. I am still having some spasms in my neck and jaw pain at the end of the day which impacts my speech and eating so we are going try returning for some physical therapy and a new topical cream along with the laser treatment to see if the combination will help get me to where I want to be. Again, a process that feels endless, and I worry about reaching a point where I run out of options and pain medicine is the only route available, which is not something I am going to accept willingly. To be frank, I’m tired of always checking to make sure I have my pill pocket in my purse so a fun day out isn’t ruined by my pain or so I can make it through a longer day at work. I’m so tired of the panic that can happen in my mind if I forget it for fear that I won’t be able to eat my meal or talk my way through the day if the pain chooses to be significant. I know there are many of you that suffer from chronic pain, so feel free to send me your knowledge. I can genuinely say I have tried everything I can think of and will hopefully soon be adding medical massage to that list, can’t hurt right? But I’ll take whatever advice I can get at this point. I am also in the market for a new dentist, the one I have been using is a bit of a drive but was worth it for the connection to UPenn and having a dentist with oral cancer experience, but he recently left the practice so there is no reason for me to do the drive now. I am looking for someone with oral cancer experience so if you live in or around the Lehigh Valley and know of a good one please pass along the name!

Other than the medical piece, life has been as you may expect for a healthcare worker. COVID-19 has turned our lives upside down, but we are coping and taking it in stride as a team. As Pennsylvania overcame its first peak, my daily routine at work returned to a more normal pace, with added rules and protections of course. I have been tested twice, both thankfully negative. Fingers crossed the need doesn’t present itself again. Otherwise I am filling my time with Owen and the dogs, family and friend time when we can gather safely, lots of books, taking an online class or 2, working out, dining in and cooking together, diving in to every true crime show/podcast we can find, and learning to garden, which it turns out we are pretty good at ☺️🙌🏻!

Tonight we will celebrate with some seriously AMAZING food and I will try to look forward to the day we can throw a real party with everyone who has supported me through this crazy journey. Your well wishes, prayers, gifts, cards, and messages just checking in and wishing me luck never go unnoticed and make me feel beyond blessed!

Please stay safe and healthy and follow all the recommendations so we can celebrate together someday soon!

<3 Devin