Hey there everyone :)
As usual I know it has been a few months since
my last update and thought I should fill all of you wonderful supporters
in on what's been going on.
Thankfully from a medical stand point
things have been steady. I continue to struggle with an unfortunate
amount of jaw and neck pain as well as fatigue with the return to work,
especially toward the end of the week. I saw a new rehab and pain
management doctor at Penn today who specializes in head and neck cancer
related pain. My doctor through St. Lukes gave it his best shot, but we
feel I am over his head at this point and will benefit from someone more
familiar with the trauma that my jaw and neck have been through. She is
AMAZING. She is the first doctor to actually feel my jaw, neck,
shoulder, in my mouth, etc in order to gage what is truly happening in
there. We are beginning some medicine changes slowly with the end goal
of getting me off of all the narcotics/muscle relaxers/ nerve blockers,
which is exactly the plan we were hoping for. She has many ideas to
trial and hopefully one or some of them will be the golden long term
ticket to help me live with less pain while also living a real life not
dependent on multiple pills a day. I am also going to restart physical
therapy for primarily my jaw to try to manually release the fibrotic
tissue now that I am farther out from treatment and my tissue can handle
it. Yay for progress!
I was suppose to have my two year pet scan and
follow up this month as well, however as usual, insurance never makes
things simple and we ended up having to postpone it all to the end of
August. Please start sending out all the prayers and positive thoughts
that you have all become so good at, for my benefit :). Hopefully we
will have reports that result in calling me officially two years cancer
free!
I have been back at work for nearly five months already and
truly the time as flown by. I have been able to gradually build my
schedule a bit every few weeks and am now working 4 days a week for
varying hours. I seem to have hit a limit with the hours I am doing, as
it has now become harder to stay awake in the evenings and my days off
are often impacted by fatigue as well. I'm very hopeful that this new
pain management doctor as well as continuing to work these hours will
help me to adjust more appropriately so that I am able to enjoy the time
I am outside of work more so than I am now. Good Shepherd and the
wonderful team of therapists I work with each day have just been so
supportive every step and have really gone above and beyond to
accommodate my needs. I am nearly at part time hours, although not
always consistently. Hopefully a transition from per diem to part time
will be available when I am physically ready to make the commitment. So
prayers for that as well :)!
Otherwise this summer has flown by so
far! I was lucky enough to have a fellow head and neck cancer survivor I
met online who had a similar surgery to mine come visit from Canada
last month with her parents. Truthfully it was a bit surreal to know
that I am not the only young woman in the world to have this happen. I'm
so grateful for the weekend we were all able to spend and that we were
finally able to meet after nearly a year of supporting one another
online!
All in all we are beginning to fall into a "new" normal
routine. Life is thankfully moving along most days without fear of
disaster or weekly visits to penn.
Thank you all for continuing to
reach out, check in, and offer your support in many forms, it never goes
unnoticed! If the scans come back clear you can all bet there will be a
celebration!
I promise the next update will come along much faster :).
Love and thanks always!
Devin
