Okay all, it’s been a bit as usual! The last six months
have been full of life in many ways, good, difficult, fun, hectic,
everything it’s suppose to be I guess. But since there is lots of
downtime right now I figured it would a good chance to write up an
update.
After I got my
clean bill of health, as far as clean goes for me anyways, we took off
running into a fall full of weddings, our first anniversary, more dog
training classes, vacation, appointments and more. Owen recovered well
from his wrist surgery and is back to bowling! Otherwise everyone is
happy and healthy and hopeful that this whole corona virus mayhem ends
very soon!
As for the
medical side of things, things have been status quo. The suppression
plan for my thrush management is working really well and I have been
thrush free for a few months now. My thyroid is still a roller coaster
and we are still working to find the right dose to manage my hormone
level. Dental needs are what they are, frequent, annoying, and just
overall a part of life.
My
pain and the way it impacts my function continues to be my main
concern. Throughout the fall and into December, life was a bit hectic
all around. Work was crazy and things were very busy, so my headaches
and jaw pain were through the roof when my botox injections from early
October wore off. I was extremely reliant on medicines, stretches, pain
rubs, essential oils, all the things, to get through the day. It was an
exhausting few weeks. By the end of the day I couldn’t look down without
pain and had to prop my head on the back of the couch to do my sudoku
puzzles or read a book spasm free. We went to my physical medicine doc
at Penn in January to re-evaluate my plan and needs. I opted to wait on
my next round of injections. They are simply a band aid to cover up the
pain caused by my damaged muscles and nerves, not a long term solution
to fix the problem. Ultimately that solution may never exist and
bandaids may be all I have access too. Nonetheless, I was given the go
ahead by her and my Oncologist to trial laser treatments to help with my
pain.
Okay. Buckle up.
This gets a little complicated. Up until now, deep tissue laser isn’t
something I could try because of my cancer history. Those of you in
healthcare will know this, but, if there is the potential that active
cancer cells are residing in a certain area, deep heat will increase the
blood flow to those cells and promote their growth. Pretty much the
equivalent of adding fertilizer to planted seeds that already have water
and sunlight. That would be bad news all around of course. So we needed
to ensure that my carcinoma wasn’t just hiding, but actually defeated.
As we learned from my surgeon in August, this risk of this cancer
returning from the same tumor source is nearly zero. So, with the amount
of pain I am limited by on a daily basis, those odds were beyond good
enough.
So thanks to a
great recommendation, I had a consultation with an outpatient clinic
closer to home that was willing to see me after talking with my doctors.
The treatments center around my neck, my jaw and my head, spending a
specific amount of time and strength on each area. They use
different heads, like a large roller ball or a smaller one to target my
jaw. It’s about 20 minutes of sitting still, eyes closed, relaxation
with this warm piece being moved all around those areas. The warmth is
artificial to make it more enjoyable, so I feel no heat from the laser
itself. At this point I am going for treatment twice a week and am about
6-7 weeks in. The challenge is there is no “protocol” for someone like
me, shocking I know. So we are moving forward completely based on
results. Unfortunately that requires me to be very in-tune with how I
feel on a day to day basis and what’s changed for the positive, even
little things, which isn’t as easy as it sounds, especially if my daily
routine changes at all.
After my very first
treatment, I had an extremely significant realization. I didn’t have ANY
pain for a solid 15 minutes. Over the past five years I don’t think I
have fully recognized the level of discomfort I have been living with on
a daily basis.
The more severe pain of
headaches and jaw/neck spasm which impact my ability to talk, eat, work
and live in general were such a focus the the day to day chronic pieces
seemed to just become normal. Until they were gone. Even though is was
brief, if gave me a reminder of what life was before cancer and what I
hope one day I might have back.
Since
that first visit, the changes have been much more gradual but very much
present. My headaches are less frequent and less intense, letting me
get through my work day and be able to focus and not feel like I just
want to shut my eyes for the ride home. My neck spasms are rare in most
positions and I don’t have to lay my head back on the couch out of
necessity at the end of most days, although these moments can still
happen. My jaw is the most notable change. I have been able to go days
at a time using only over the counter alleve and not turning to my
stronger pain medicines, including days that are full and I am actively
talking all day long. This is enormous. Getting off these medications
has been the goal and the injections have not helped that along. Of
course I am not there yet, but the results at this point make me open to
continue. Unfortunately there are a lot of unknowns because, as we are
all aware, I am completely abnormal. There is no way of knowing if or
when the improvements will plateau or if they will last long term. And
the research for laser treatment on fibrotic tissue is limited,
especially for head and neck cancers. So that just means I keep doing
what feels like the next right thing and hope for the best.
I
was suppose to have a lot of my general follow ups this month at Penn,
but with the current events all have been postponed. My work life is
very light also, which is good and bad. Good Shepherd is really trying
to find all opportunities for us to help in areas that have to remain
open, and I have decided to use some of the extra time when nothing is
available to take a few online classes I have been holding on to and try
to enjoy the time with Owen and our hairy kids who are very happy to
have the daily company.
It’s
amazing to me how fragile our world becomes when something like this
happens, and how it sheds a light on the true nature of the people
around you. (Shout out to the crazy people that took all the bread
🤦🏻♀️). Some people are home indefinitely right now, and many others
that do not work essential jobs should be. I’m sure if this was
happening when I was actively sick, I would be terrified and mad at the
social gatherings that still seem to be happening. I wouldn’t only be
fearful of Covid-19 itself, but also the potential shortage of the
supplies I relied on to survive and remain infection free. Or delays on
shipment of those items because of backlogs. Additionally, as a
healthcare professional, I shouldn’t have to ration protective and
sanitation supplies needed to keep myself, my coworkers and my patients
safe, because people are losing their minds and buying it all just to
choose to not stay home with their stock piles.
If
you or someone you know is complaining about social distancing,
hoarding a year’s worth of toilet paper, or pissed off that their
favorite bar is closed, feel free to refer them here. I will be happy to
educate them on how much control they have over how long this lasts and
how beneficial the time can be if they make it so. I lived nearly 18
months full of days with just me and my dogs while family worked. Those
days were full of sickness, pain, naps, and medical needs initially. But
soon they became focused on my physical and mental health when I
couldn’t yet return to work or enjoy going out to social events, but
felt well enough to add life back into my time at home. It’s all doable
if you make it so. It’s not the end of the world if you can’t hang out
with friends or wander the mall or eat out for a little while. I
promise.
My piece of
advice when you want to complain or go out unnecessarily, live your
current life like a cancer patient lives every day of theirs. Even if
you don’t feel like it’s a big deal to you, it can be to those around
you. And you have the power to help.
Of course, wash your hands and don’t touch your face. Stay at home unless you need to go to the store or pharmacy.
Practice
good self care. Sit outside. Take a deep breath. Go for a walk.
Exercise if you want. Take a nap if you feel like it. Find new ways to
fill your time. Get started in your spring cleaning. Take a class. Prep
some meals. Read a new book. Foster a pet. Learn a craft. Meditate. Play
and cuddle a little extra with your dog. Call your Mom. And most of
all, be thankful for what you have. Don’t panic about what you can’t
control, and do your research and be proactive about the things you can
control.
Life is
different and routines have changed. It’s a scary time in the world. But
life isn’t over and we will be okay and stronger for it when this
passes. However, if you act like you only care about you, people will
remember you for that.
Okay, I’m off my soap box. Thank you all as always for taking the time to read and care. Here’s to five years free this summer!
Be well!
Xoxo Devin
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