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
