Hi everyone :)
I
figured I would give mom a break from writing this post since I haven't
exactly made things easy on her these days. Let's consider it a late
Mother's Day present!
You
may not all realize it, but this week marks one year ago that my
symptoms began. Although it was a rough road to finally get to a doctor
who was able to figure things out, I am so grateful to have found the
team I have. I would certainly not be living the life I am without them.
I want to begin by thanking all of you for following our journey and
sticking by our family this past year. All of the prayers, gifts,
visits, cards, pearls of wisdom, rides, and opportunities to unload the
stress of it all has been more than we ever could have hoped for. We are
truly lucky to have all of you in our corner!
As
many of you know, the Catasaqua Area Showcase Theater heard of my story
and offered to help. During all of their showings of the play Mary
Poppins last month, their Families Helping Families program collected
donations for us and another family. All of the money collected was then
matched by the cast and board. We weren't expecting a great deal, just
hoped for enough to offset some of my medical expenses such as my COBRA
which is a significant cost when on disability. Surprisingly, we
received enough to cover about 5 months of my COBRA health insurance
coverage! As you can imagine, mom and I cried like babies at first, but
then the joy set in. If all goes well, which of course we hope it does,
this money will allow me to have a great insurance plan until I am able
and ready to return back to work. The word thankful doesn't even begin
to describe how I feel. So many of you contributed to this fund and the
CAST family made it all possible. I am just so blessed to be a part of
the community I am :).
Alright
back to real life and what's been happening on the medical front. I
returned to physical therapy a few weeks ago. Unfortunately my strength
and range of motion in my neck and right shoulder did decline a bit
after my gall bladder surgery so there has been some making up to do in
those areas. Most of my pain now is nerve pain in my mouth (radiation
damage) as well as in my shoulder and neck from surgery. I am also
beginning to have a lot of spasms in my jaw and my right neck/shoulder.
Because the damaged nerve has caused paralysis in one of my big muscles,
all the little ones are working overdrive to try to take over.
Unfortunately this isn't a good thing and has been difficult to control.
My PT is concerned about how slow my nerve function is returning and
how that will hinder my return to work. Brain injury was a very physical
world and there's chance my body won't be able to handle it.
Thankfully, being an OT means that there are millions of options for me
to consider going forward, I just need to trust that the purpose of all
of this will show itself in time and lead me down the right path :).
Last
week mom and I made an unexpected trip to philly because I had a sore
spot on my tongue that would not heal. You can only imagine the level of
panic that had set in by the time we got to Dr. Weinstein's office.
Deep breath everyone, everything was fine! All the new foods and chewing
I have been doing was making my tongue rub against my tooth which
caused the sore spot. The downside is I have to cut back to mostly just
soft or puréed foods until it heals. That is how I get the majority of
my calories because chewing makes me to tired after just a small amount
of food, but it was nice to have a few goldfish or a potato chip here or
there :). The trip also paid off because we were able to get Dr.
Weinstein to schedule my feeding tube removal!!
Today
mom and I went down to Upenn for a super long day. Pet scan prep and
the scan itself takes about two hours and began at 8am, that meant a
430am wake up call for us :-/. Everything with that ran fine, most of it
I spend sitting by myself relaxing while the injection they give me
runs its course. After my scan was done I had an appointment with Dr.
Raper to have my feeding tube pulled. I have been waiting for this
moment, despite the discomfort it causes, for many months. Mostly
because summer is coming and I want to swim! Not to mention the tube
itself is almost two feet long and I'm so sick of tucking it in to my
underwear all the time and being unable to sleep on my belly! I have
seen at least a dozen tubes pulled while working as an OT and it is
never a pleasant few seconds. However, the long term benefits to
increase my quality of life are so worth it! Although I wasn't thinking
of that when he did it. All I could think of was "holy hell this is
awful!" And then it was done :). The grossest part you ask? Oh that's
the fact that for the next few days my food can seep out of the wound on
my stomach. Awesome.
After
seeing Dr. Raper, mom and I grabbed some food and headed off to see Dr.
Lin, my oncologist, in hopes that he would already have my pet scan
results and we wouldn't have to wait until my Wednesday appointment with
Dr. Weinstein. Our wishes came true :)! The final report wasn't in
yet, but he looked at the scan himself and said there are no obvious
changes or signs of cancer! Thank you for all the prayers, they are
certainly working! He was very happy with how I am doing over all and is
hopeful that when I come back for my scans in August we will be able to
discuss my return to work! Hopefully this is the turning point we were
hoping for.
So
what comes next? I see Dr. W on Wednesday for my official pet scan
results and from there might be able to schedule my surgery to have my
tongue released and hopefully some scar tissue removed to help with my
pain and mobility. Keep those prayers coming that I get the go ahead and
can keep moving forward!
Thank
you to all of you again for the love and support. This has been an
extremely difficult year and I would not have been able to do it without
all of your support and prayers! We are far from done but in a much
better place than we were a year ago.
Lots of love and thanks,
Devin
