As usual, I know it has been a long time since my last update so I
figured it was time to let you all know how things are going. Sorry
this is a long one, but life has been both difficult and
overwhelmingly exciting over the past few months.
Recovering from surgery has taken quite a bit longer than expected
which has been frustrating, but something I probably should have been
more prepared for based on how this past year has gone. Cancer seems
to be a game of successes and setbacks, and my journey has matched
that description perfectly.
After waiting for swelling to decrease and allowing myself to adjust
to my new tongue function, my eating has returned to what it was prior
to surgery in August. I still require increased time, am limited in
what foods I can manage, and have pain both in my mouth and my jaw
after eating. But, I am able to go out and order at a restaurant,
which is the goal Dr. Weinstein originally had for me for my eating
and swallowing. Plus, I had a soft taco the other day for the first
time since before I got sick and it tasted like heaven. I think as I
become more confident in my swallow and oral motor skills, I will
continue to be more open to trying different types of food. I would
truly love a salad again one of these days!
I restarted physical therapy in early September, unfortunately though
my all star physical therapist broke her ankle the same day as my
initial evaluation so I started with a new team. However due to many
reasons, I switched to Good Shepherd and feel that it was 100% the
right choice. I'm happy to say that the nerve damage in my right
shoulder is slowly improving. I still have a lot of paralysis in my
neck and upper back, but my scapula is more stable on command and my
range of motion has increased. My neck and incision area are still
stiff and tender and my neck range of motion has been a very slow
battle. The spasms in my neck and jaw are making it a huge challenge
to overcome. However, now with the right kind of help I am hopeful
that I will make some much needed progress.
I also began working with a private speech therapist to help me move
past the place I was able to rehab myself to after surgery with
guidance from the speech therapist at upenn. My tongue still lacks
control and endurance, which affects the quality of certain sounds.
However, the range of sounds I am now capable of is much more diverse
than it was prior to surgery. We are focusing on strengthening the
sounds I know I can make as well as certain movements of my tongue and
mouth with the end hope that the hard sounds improve along with the
rest of it. So far so good, although the endurance of my speech is
still a big barrier to me returning to work. Basically the more I
talk, the more tired and painful my mouth and jaw become, and the less
clear my speech is. This too will hopefully improve in time. Fingers
crossed for sooner rather than later.
As far as my pain goes, now that I am officially a year out of
radiation (insane huh?) my pain is considered chronic and we need to
find alternatives to treat it effectively for long periods of time
without the use of heavy narcotics. All of this is for the goals of
returning to work, eating and speaking as long as a typical person my
age without pain limiting or fully stopping my ability to perform
those tasks. I am hopeful the pain management center will have an
effective long term solution to help me get back to my life. I am
currently waiting to hear back from them for an appointment.
My latest pet scan and follow up with Dr. Weinstein both occurred this
past week as well. I swear, people with cancer need to be treated for
PTSD, especially when the time for scans and results come around.
There is always this intense fear of the cancer returning, then the
hypochondriac inside you takes over, convincing you that every ounce
of pain or change in the norm is the cancer returning. Finally you
scold yourself for being irrational and pray, a lot. Experiencing that
every 3 months you would think it gets easier but it absolutely
doesn't.
Thankfully though, the prayers were heard :)! Dr. Weinstein is
thrilled with the progress I have made across the board and was also
very happy to see that my life is moving forward in a positive
direction. I am one year post radiation and continue to be cancer
free! I will go back to see Dr. Lin and have an MRI in March, and I
don't need another PET scan until July, At which point I will be near
my two year mark!
Now that I am up and about more there has been time to enjoy the fall
weather and try to enjoy this time away from real life. Owen and I
spent a much needed weekend in Niagara Falls in September. It was nice
to feel more like the old me, even if it was just for two days. We hit
up the maid of the mist and cave of winds on the US side, stayed in
Canada for the night and had a beautiful dinner in the Skylon Tower,
and had an awesome time zip lining right next to the falls. It took me
a few days to bounce back, but it was more than worth it!
We also have some big news to celebrate :). As most of you know, Owen
shocked me with the most amazing surprise of my life on October 23rd.
We went pumpkin picking and to mazilla, a corn maze in saylorsburg,
where he got on one knee and asked me to (officially) spend the rest
of out lives together! This last year a half has been a true test for
us, and the timing is a perfect way for us to move forward and leave
the challenges we overcame behind us. We are planning the wedding for
October of 2018. And yes, we know it's a long way away, but we both
want for me to be back on my feet and back to work. Plus, planning a
wedding should be fun, not a pile of stress and rushing. We believe
it's the best plan for us and so look forward to celebrating our crazy
journey so far and our future life together.
My birthday came and went at the end of October and I can't help but
remember what life looked like this time last year. Radiation everyday
for six weeks, three hours round trip to philly and back, and having
no desire to do anything but sleep while being fueled by a tube
through my stomach, if i remembered to hook it up before passing out.
The aches and pains I have now certainly affect my quality of life,
but a year ago I had no quality of life. I couldn't eat or speak, and
was in too much pain to even smile most of the time. I certainly
didn't celebrate my 27th birthday to the fullest. I have to remind
myself that although I am not yet where I want to be, I have come so
far from where I was. And that is a reason to celebrate, in addition
to turning 27, and 28 :), and getting engaged!! Oh and that little
cancer free thing :)!
So, the plan ahead, more physical and speech therapy, and lots of hard
work on my own. Plus a plan to control the pain beast that has
resulted from all of this so I can finally get back to work and feel
like a therapist again rather than a patient. Also, since I wasn't
able to eat or celebrate the holidays last year, I am so looking
forward to lots of food and enjoying the season with my fiancé, family
and friends!
With thanksgiving coming up I have to say I am most thankful for my
improving health, happiness, and amazing support system! Thank you all
for following my story and supporting my family and I through prayers,
donations, and every other way possible. I know I wouldn't have made
it to see 28 without all of the love I have been shown and
encouragement I have been given. You have all given me a reason to
want my life back, and that has made all the difference. I know the
life I now have will be very different, but I also know that this has
all happened for a reason and I am closer to finding out what that is.
Keep the prayers coming that my health continues to move in a positive
direction!
Lots of love and thanks,
Devin
figured it was time to let you all know how things are going. Sorry
this is a long one, but life has been both difficult and
overwhelmingly exciting over the past few months.
Recovering from surgery has taken quite a bit longer than expected
which has been frustrating, but something I probably should have been
more prepared for based on how this past year has gone. Cancer seems
to be a game of successes and setbacks, and my journey has matched
that description perfectly.
After waiting for swelling to decrease and allowing myself to adjust
to my new tongue function, my eating has returned to what it was prior
to surgery in August. I still require increased time, am limited in
what foods I can manage, and have pain both in my mouth and my jaw
after eating. But, I am able to go out and order at a restaurant,
which is the goal Dr. Weinstein originally had for me for my eating
and swallowing. Plus, I had a soft taco the other day for the first
time since before I got sick and it tasted like heaven. I think as I
become more confident in my swallow and oral motor skills, I will
continue to be more open to trying different types of food. I would
truly love a salad again one of these days!
I restarted physical therapy in early September, unfortunately though
my all star physical therapist broke her ankle the same day as my
initial evaluation so I started with a new team. However due to many
reasons, I switched to Good Shepherd and feel that it was 100% the
right choice. I'm happy to say that the nerve damage in my right
shoulder is slowly improving. I still have a lot of paralysis in my
neck and upper back, but my scapula is more stable on command and my
range of motion has increased. My neck and incision area are still
stiff and tender and my neck range of motion has been a very slow
battle. The spasms in my neck and jaw are making it a huge challenge
to overcome. However, now with the right kind of help I am hopeful
that I will make some much needed progress.
I also began working with a private speech therapist to help me move
past the place I was able to rehab myself to after surgery with
guidance from the speech therapist at upenn. My tongue still lacks
control and endurance, which affects the quality of certain sounds.
However, the range of sounds I am now capable of is much more diverse
than it was prior to surgery. We are focusing on strengthening the
sounds I know I can make as well as certain movements of my tongue and
mouth with the end hope that the hard sounds improve along with the
rest of it. So far so good, although the endurance of my speech is
still a big barrier to me returning to work. Basically the more I
talk, the more tired and painful my mouth and jaw become, and the less
clear my speech is. This too will hopefully improve in time. Fingers
crossed for sooner rather than later.
As far as my pain goes, now that I am officially a year out of
radiation (insane huh?) my pain is considered chronic and we need to
find alternatives to treat it effectively for long periods of time
without the use of heavy narcotics. All of this is for the goals of
returning to work, eating and speaking as long as a typical person my
age without pain limiting or fully stopping my ability to perform
those tasks. I am hopeful the pain management center will have an
effective long term solution to help me get back to my life. I am
currently waiting to hear back from them for an appointment.
My latest pet scan and follow up with Dr. Weinstein both occurred this
past week as well. I swear, people with cancer need to be treated for
PTSD, especially when the time for scans and results come around.
There is always this intense fear of the cancer returning, then the
hypochondriac inside you takes over, convincing you that every ounce
of pain or change in the norm is the cancer returning. Finally you
scold yourself for being irrational and pray, a lot. Experiencing that
every 3 months you would think it gets easier but it absolutely
doesn't.
Thankfully though, the prayers were heard :)! Dr. Weinstein is
thrilled with the progress I have made across the board and was also
very happy to see that my life is moving forward in a positive
direction. I am one year post radiation and continue to be cancer
free! I will go back to see Dr. Lin and have an MRI in March, and I
don't need another PET scan until July, At which point I will be near
my two year mark!
Now that I am up and about more there has been time to enjoy the fall
weather and try to enjoy this time away from real life. Owen and I
spent a much needed weekend in Niagara Falls in September. It was nice
to feel more like the old me, even if it was just for two days. We hit
up the maid of the mist and cave of winds on the US side, stayed in
Canada for the night and had a beautiful dinner in the Skylon Tower,
and had an awesome time zip lining right next to the falls. It took me
a few days to bounce back, but it was more than worth it!
We also have some big news to celebrate :). As most of you know, Owen
shocked me with the most amazing surprise of my life on October 23rd.
We went pumpkin picking and to mazilla, a corn maze in saylorsburg,
where he got on one knee and asked me to (officially) spend the rest
of out lives together! This last year a half has been a true test for
us, and the timing is a perfect way for us to move forward and leave
the challenges we overcame behind us. We are planning the wedding for
October of 2018. And yes, we know it's a long way away, but we both
want for me to be back on my feet and back to work. Plus, planning a
wedding should be fun, not a pile of stress and rushing. We believe
it's the best plan for us and so look forward to celebrating our crazy
journey so far and our future life together.
My birthday came and went at the end of October and I can't help but
remember what life looked like this time last year. Radiation everyday
for six weeks, three hours round trip to philly and back, and having
no desire to do anything but sleep while being fueled by a tube
through my stomach, if i remembered to hook it up before passing out.
The aches and pains I have now certainly affect my quality of life,
but a year ago I had no quality of life. I couldn't eat or speak, and
was in too much pain to even smile most of the time. I certainly
didn't celebrate my 27th birthday to the fullest. I have to remind
myself that although I am not yet where I want to be, I have come so
far from where I was. And that is a reason to celebrate, in addition
to turning 27, and 28 :), and getting engaged!! Oh and that little
cancer free thing :)!
So, the plan ahead, more physical and speech therapy, and lots of hard
work on my own. Plus a plan to control the pain beast that has
resulted from all of this so I can finally get back to work and feel
like a therapist again rather than a patient. Also, since I wasn't
able to eat or celebrate the holidays last year, I am so looking
forward to lots of food and enjoying the season with my fiancé, family
and friends!
With thanksgiving coming up I have to say I am most thankful for my
improving health, happiness, and amazing support system! Thank you all
for following my story and supporting my family and I through prayers,
donations, and every other way possible. I know I wouldn't have made
it to see 28 without all of the love I have been shown and
encouragement I have been given. You have all given me a reason to
want my life back, and that has made all the difference. I know the
life I now have will be very different, but I also know that this has
all happened for a reason and I am closer to finding out what that is.
Keep the prayers coming that my health continues to move in a positive
direction!
Lots of love and thanks,
Devin
