Happy Sunday all my favorite people :)!
I realized I left you all on the edge of your seats back in January and thought it was time for an update!
January
was a very tough month for me, more emotionally than physically. The
new issues with my jaw bone and the tooth extraction site continued to
knock me down for a little while. Not having answers about whether a
bone in my face was slowly dying inside of me was almost worst than
waiting for cancer news for some reason. I felt abandoned by my
periodontist at a time that in my mind I needed urgent help and answers.
I respect her choice for me to move forward, and looking back I know
she made the best professional decisions at the time. However, the lack
of assistance with helping me find proper follow up angers me for
patients who don’t have the resources available that I do. There is no
contact or connection between the dental and medical worlds, I couldn’t
even rely on her and my surgeons sharing notes. That places far too much
pressure and stress on patients who have enough of both of those
things, which is how issues are missed or become more problematic than
they should be. Not to mention I have to reexplain the last year of my
life at every physician appointment because they don’t share the records
with who I give them permission to share with. It’s a waste of
everyone’s time. Additionally, my stress increased as I pictured new
changes to a lifestyle I have finally somewhat become accustomed to and that
made me so angry. Thankfully my amazing plastic surgeon Dr. Cannady
always knows how to bring me back down. I saw him the end of January. He
had me get a CT scan of my face to get a measurement of my jaw bone and
see if there are any fractures that would require surgery to happen
sooner. My bone on that side is visibly effected by what they call
osteoradionecrosis (ORN), or bone death related to radiation, which I
already knew, just not to what degree. He said I will most likely need
surgery to fix the problem at some point in my life, but it could be 3
months or 40 years down the road. There is also a possibility because I
am young and still in my 5 year healing period that my bone will
regenerate and heal on its own. So now we watch and wait. I see him
again in April to talk further about my jaw, as well as the fact that I
still have a tooth hole that needs to close up before I lose my mind and
the chronic inflammation causes additional trouble with my remaining
teeth. My family doc is also still working on my ever troublesome
thyroid levels, but that will happen in time.
February
came with a visit to Dr. Zheng, my amazing pain doc, to talk about the
next round of Botox and the plan ahead. The Botox injections have helped
tremendously with my headache management, but the jaw pain continues to
be an issue. I see her the first week of April for my next round of
injections at a higher dose and will probably return to physical therapy
for a little while. We are also looking into options for clinical
trials involving laser treatments to see if I would qualify or benefit
from that at all to improve my healing, range of motion, blood supply
and pain down the line. All good steps.
Owen and
I have been talking for a few months about getting a third dog but the
timing hasn’t been great. Times changed, so the end of February the
Darby Clan welcomed a new addition, our two year old (ish),
lab/something mix, Marshall! The first week was a bit rough for
everyone, but we have settled into a routine, everyone is getting along
better than we could have hoped and he is truly wonderful. He is In
desperate need of some manners, but otherwise has been the best decision
we could have made for our family right now!
Now
for the final bit of news! I had my 3.5 year scans a week ago and saw
my oncologist this past Friday. I continue to be cancer free and
thriving according to him :). I will see him in one year, hopefully
without scans if my August ones look good (although we have had that
plan before so I’m not holding my breath 😂). He also gave me his
blessing to find all the clinical trials to help with my pain as I wish
as long as I fit the criteria of the study. My worry was that typically
lasers increase blood flow, and blood flow can stimulate growth to
potential cancer cells in the area. I am far enough out now that he
feels that we would have found them by now so as long as I am within the
trials criteria the risk is no greater than the cancer coming back
randomly. So we will see where that takes us. The next few months we
focus on more pain management, seeing plastic surgery again to get a
status update on my jaw and plan for my tooth, and all the other
maintenance living my life requires: every 3 month dental visits, 3
month thyroid blood work and follow up, physical therapy and anything
else that pops up in between. Otherwise I am pouring all of my time and
energy outside of work and volunteering into our perfect Darby pack and
making Marshall the best dog he can be. Along with getting Ellie’s
bratty self in line!
As always, thank you all
for caring and for your continued support. This life has become anything
but simple, but I am surrounded by people and a purpose that make it
all worth it, even during the frustrating times.
Lots of love ❤️
Devin
