Merry Christmas Everyone!!
I thought today might be a good time to update you all on life lately and what my plan is for after the holidays.
Thanksgiving
was a great day, with more food than I ever could have hoped to be able
to eat and a whole lot of family time. All in all it was everything I
could have wanted.
About two weekends ago we went into Philly to
spend the day with Siobhan and Dan, get some good food and do
christmassy things around the city. It was a crowded day and I took my
first ever uber ride! But we got to see the Macy's Christmas light show
and wander around some nice shops with hot cocoa. It was a really nice
was to kick off Christmas with everyone and be in Philly for something
other than the doctor!
Last weekend I had a perfect visit with my
college friend and roommate Courtney who I see about twice a year now
since she moved south. There is never enough time for us to spend
together, but we make the most of what we have. We spent the weekend
catching up and doing a whole lot of Christmas! Her family stole her
away to soon 😉 but a little time is surely better than none. It was an
amazing Christmas present!
There isn't too much new on the health
front. I continue with my speech and physical therapies in hope of
returning to work next month sometime. In order for that to happen there
is still one big barrier to tackle and that is pain management. I
finally saw the pain management specialist last week and we are
confident that they will be a good fit for my needs at this point. The
doctor had a plan ready after just a short conversation and prescribed
some new medications that will hopefully lessen my need for heavier pain
medications to eat and speak for long periods of time. Unfortunately,
my insurance company wasn't to keen on covering said medications, so
once the holidays are over we will find out if the doctors authorization
worked or if we will have to create a new plan. Once I know that my
pain regimen is effective, I will feel much more confident about setting
a solid return to work date. So the medical update is a brief one, but I
see that as a huge improvement on life overall :)!
I got to spend my
Christmas surrounded by two wonderful families, each with very
different traditions and ways to celebrate the day together. Sitting
back during both of these I couldn't help but realize that I think I
finally understand the the happiness that Christmas is suppose to bring.
Last year, as we all know, I was in no place to celebrate the holidays
and, quite frankly, I had zero Christmas spirit to help me care to try
and enjoy it. I went through the motions, bought gifts, spent time with
family, watched the usual favorite films, and tried to do what I knew
would make my loved ones happy, but there is something about severe oral
pain, fatigue, and an inability to speak, sing carols, and drink more
than bland soup broth that can really put a damper on someone's
Christmas. Thankfully though, we made it through and were given the
gifts of wonderful family time and a whole lot of love despite the
challenges. In the past, focusing on the piles of gifts always had a way
of taking over. I hope to never lose this new perspective that
Christmas is truly a time to be aware and grateful for the blessings
life has given us, while trying to pay forward the love and good fortune
to those who may be unable to experience them because of difficult
circumstances, just as so many of you did for me this time last year. I
see today that I am enormously blessed, by ever improving health, an
amazing and supportive family, my patient and giving fiancé and the
family he has allowed me to join, and my faithful friends who have stood
by my side while at my worst. While there are still trials and hurdles
to overcome, I know that they will pass and life will continue to move
forward, hopefully in a positive way. I have learned that we have a lot
of control over the direction our lives take, even when we feel
everything is completely out of our hands. It is the way we choose to
face challenges such as poor health, difficult jobs, or trying
relationships, that can shape what our lives evolve into year after
year. Christmas is a good time to step back and reflect on whether or
not The Who you have been through the past year is someone you would be
proud to remember in the years to come. And it is also a time to plan
for change if the answer to that question happens to be that you realize
you can and should do better. I am proud of the way I have confronted
cancer and all that has been thrown at me, but I also know that the
journey is far from over and it is now time to decide what I want my
life to become as a result of this new path that has been laid out for
me. I'm hopeful that the new year will not only bring clarity and
renewed strength, but also continued good health for myself and my loved
ones and a whole lot of joy in moving forward as well as faith in my
journey ahead.
Thank you all for caring and being such a strong part
of my progress this year. Please keep the prayers coming that I am able
to solve these last few problems in the new year to get back to a
purposeful life!
Merry Christmas to all of you!!! And a happy and blessed New Year!
With all my love and gratitude,
Devin
Devin and Owen
Monday, December 26, 2016
Wednesday, November 16, 2016
Update Nov. 16, 2016
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
Tuesday, August 16, 2016
Update from Devin - 8/16/16
Hi everyone :)
I'm sure many of you have been eager to hear how things are going
since my surgery two weeks ago so here's an update on my life.
My surgery went well overall, no disasters or emergencies of any kind
which is always a blessing. They revised my neck incision and removed
a ton of scar tissue from that area. However, my tongue, as usual,
didn't cooperate so the game plan changed a bit. My "new" tongue
tissue was very atrophied and deflated because of radiation so there
wasn't enough tissue to attach the graft for reinforcement to. So Dr.
Cannady ended up releasing my residual tongue, so now I pretty much
have a little over half a tongue to work with. My movement is great so
far, it's just a matter of keeping it that way through lots of
exercise and practice to improve my coordination and speech.
At first I was very frustrated and questioned whether or not it was the right
choice because of all the swelling, pain, and significant decrease in
my speech and eating. Things in those areas have gotten progressively
better and Dr. Cannady is very happy with my recovery so far. I just
have to be patient (there's that stupid word again) and work hard to
make it what I want it to be and prevent the scar tissue from
reattaching. I will be restarting physical therapy at the end of the
month too so that will help significantly.
I had an MRI on Friday and saw Speech therapy and Dr. Lin yesterday.
Speech gave me an arsenal of exercises and ideas to improve my
control, coordination, and clarity of speech. There are certain sounds
I struggle with like Ds, Ts, and Gs, all of which require the tongue
to be in the right spot in the mouth. She feels I made the right
decision having surgery and will get a positive outcome from all of
this.
I saw Dr. Lin next and he must have known I was nervous because the
first words out of his mouth were "the scans were all good!" There
were no signs of disease or concern. My next pet scan is in November
and my appointments will now be four months apart instead of three.
This means I am Officially One Year CANCER FREE! I am nine months out
of treatment too which is crazy! Thank you all for the continued
prayers and positive vibes. One year down, hopefully the toughest of
them all!
Lots of love,
Devin
I'm sure many of you have been eager to hear how things are going
since my surgery two weeks ago so here's an update on my life.
My surgery went well overall, no disasters or emergencies of any kind
which is always a blessing. They revised my neck incision and removed
a ton of scar tissue from that area. However, my tongue, as usual,
didn't cooperate so the game plan changed a bit. My "new" tongue
tissue was very atrophied and deflated because of radiation so there
wasn't enough tissue to attach the graft for reinforcement to. So Dr.
Cannady ended up releasing my residual tongue, so now I pretty much
have a little over half a tongue to work with. My movement is great so
far, it's just a matter of keeping it that way through lots of
exercise and practice to improve my coordination and speech.
At first I was very frustrated and questioned whether or not it was the right
choice because of all the swelling, pain, and significant decrease in
my speech and eating. Things in those areas have gotten progressively
better and Dr. Cannady is very happy with my recovery so far. I just
have to be patient (there's that stupid word again) and work hard to
make it what I want it to be and prevent the scar tissue from
reattaching. I will be restarting physical therapy at the end of the
month too so that will help significantly.
I had an MRI on Friday and saw Speech therapy and Dr. Lin yesterday.
Speech gave me an arsenal of exercises and ideas to improve my
control, coordination, and clarity of speech. There are certain sounds
I struggle with like Ds, Ts, and Gs, all of which require the tongue
to be in the right spot in the mouth. She feels I made the right
decision having surgery and will get a positive outcome from all of
this.
I saw Dr. Lin next and he must have known I was nervous because the
first words out of his mouth were "the scans were all good!" There
were no signs of disease or concern. My next pet scan is in November
and my appointments will now be four months apart instead of three.
This means I am Officially One Year CANCER FREE! I am nine months out
of treatment too which is crazy! Thank you all for the continued
prayers and positive vibes. One year down, hopefully the toughest of
them all!
Lots of love,
Devin
Monday, July 11, 2016
Update from Devin 7/11/16
Okay,
so I know it has been a while since I posted an update, but no news is good
news right? Compared to this past year, the past few weeks have been downright
boring when it comes to the whole cancer thing. After my big pet scan day, I had
a few things go on medically. I met with Dr. Weinstein about my official pet
scan results and to discuss the surgery I have been begging for since February.
He was happy with my scan results with one exception. I had some nodules on my
lungs that are indicative of pneumonia or possible aspiration, meaning some of
my food may be “going down the wrong pipe.” I have to follow up with a
pulmonologist at the end of this month to further explore what may be going on.
I brought up the possibility of having my surgery and was met with quite a bit
of resistance at first. He is concerned that by getting surgery, my scan in
November will be more complicated to read and felt that it is “premature.”
Those of you that know me know that I am a typical redhead, stubborn and
outspoken. I didn't take to the word premature well because of how long and
difficult this journey has been, as well as because I was told I could have it
if my second pet scan was good. Needless to say he and I had a discussion
regarding my function and the limitations I currently have. Thank God I am an
OT and was able to convey that I have a life and a job to return to and this
surgery can help me take the necessary steps to do that. Waiting another year,
which is what he would like, is just not an option in my eyes. In the end, I
won the stubborn battle and was given permission to schedule surgery at my one
year mark! Believe it or not, August 4th marks one year cancer free
for me!! Until he said it, that thought hadn't even crossed my mind, but I am
so grateful that it is almost here and that I am celebrating it with a surgery
that I actually want :).
I
saw my plastic surgeon Dr. Cannady in mid June with lots of questions and hopes
weighing on us. He is extremely pleased with the function I have maintain and
recovered considering how drastic my tumor removal and radiation were. He told
me that after my initial surgery, he never believed that further reconstruction
would be an option because of how much tissue was removed. However, now he is
pleasantly surprised and feels that he can give me a bit more function and comfort
with a revision. My surgery is officially scheduled for August 2nd!
At that time, he will release my tethered tongue, remove a little scar tissue
caused by radiation, reinforce the floor of my mouth with a synthetic graft,
and fix the area of my incision on my neck where I had the infection back in
September. All of that, and I get to go home the same day! It doesn't get much
better than that! Holy cow am I excited! He is hopeful this will solve some of
the problems I have been having but was clear that more revisions may be needed
in the future after I hit my two year mark.
I
have been on hiatus from physical therapy because I ran out of visits, but
thanks to my wonderful PT, I have a great home program so I am as strong as I
can be going into surgery. My visits have replenished so I will have plenty to
get prepared to go back to work after I heal from surgery. I have also been
working with my Haiti team again which has been wonderful. We have been
preparing for a physical therapist from Cap Haitian to come to the Lehigh
Valley to learn more techniques so he can further improve the already awesome
care they provide. He arrived successfully today and it will be a busy two
weeks to make sure his US experience is full of new, positive and educational
opportunities. It was amazing to learn from him that many of my friends in
Haiti have been praying for me throughout this journey, I am so grateful to
have this connection and to be so generously thought of by people who have so
many other burdens to bare. Aside from the stupid cancer thing, I am one lucky
girl for the support system I have around me.
On
a super happy note, the Bermuda vacation that Owen and I had to cancel last
summer finally became a reality. Of course we couldn't go to Bermuda just yet,
but we had an awesome week away together in Myrtle Beach, SC! It was a long
drive, but time well spent together and a great way to just forget about the
trials of real life and enjoy the beauty of the beach and the many exciting
things to do!
One
last thing I want to let everyone know about involves a part of the path I
think I am suppose to follow going forward. The local chapter for The Oral
Cancer Foundation is having a benefit walk in the fall to support the massive
need of furthering research for curing this debilitating and disfiguring
disease. The walk is on Sunday October 9th at Coca Cola Park in
Allentown. I have registered a team, Devin Strong, which you can sign up with
when you register for the walk. If you are unable to join us, you can still
support the cause through donating to the foundation through my Captain’s Page
and helping us meet our goal! I hope many of you are able to come and support
our team and this awesome foundation! I know many people are touched by cancer,
but not nearly as many are aware of how severely oral cancer impacts the lives
of those they touch, and like many other types, it certainly does not
discriminate. So please please please come out and help spread some much needed
awareness!!
Here
is the link for my fundraising page…
I
thank you all again for your prayers, generosity, love, and encouragement over
this past year. The journey is far from over, but we are finally off to a
positive…in between? Haha.
Lots
of love,
Devin
Monday, May 16, 2016
Lots of news - 5/16/16
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
Tuesday, April 12, 2016
Update 4/12/16
Hi All,
I know it's been awhile since my last post. Things were going along just fine, although Devin continued to have heartburn and vomiting every 4 weeks or so since radiation. The weekend of March 13th was particularly bad and the oncologist on call at Upenn said it was an after effect of the radiation and gave her a new prescription which worked right away.
On Monday March 21st Devin called me at work about 3PM in a great deal of pain. She actually said it was a 10 which is not a number she has used through this entire journey. I rushed home and called Erin at Upenn while I was on my way. She said that I should take her to our local emergency room and have her heart checked and that they had a cocktail that can stop the heartburn. By evening they had ruled out heart and the cocktail wasn't working so they started ruling out other things. The first and only thing they needed was an ultrasound of her gallbladder. She had stones, sludge and was starting to run a fever. After consultation with Upenn it was decided to admit her to Lehigh Valley Muhlenburg and have an ENT and anesthesiologist both check her out the next day to see if they were comfortable doing the surgery. Otherwise it would have been off to Upenn. They both signed off on it the next day so she was off to surgery about 4PM. All went well although the anesthesiologist said that Devin is hard to intubate and she now has a card she must carry telling them the type of scope that should be used. She came home and has been recovering. She is eating and taking her meds by mouth so that she can hopefully get her feeding tube removed in the not to distant future. Next thing is a return to PT to get her stamina and movement in her shoulder back, a PET scan in May and hopefully surgery in early June.
Just a reminder: that the Catasauqua Area Showcase Theater is doing a fundraiser through their Families Helping Families Program. It works like this: Two families are chosen to be recipients (We are one of the 2). In the lobby before entering the auditorium there is a table and jar set up. The audience is asked to donate any amount they would like to the cause. The amount is counted and whatever is brought in, Catasauqua Area Showcase Theater will match that amount. Monies collected at all the performances count towards the total that is matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested in supporting this great organization that is supporting Devin you can order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
I know it's been awhile since my last post. Things were going along just fine, although Devin continued to have heartburn and vomiting every 4 weeks or so since radiation. The weekend of March 13th was particularly bad and the oncologist on call at Upenn said it was an after effect of the radiation and gave her a new prescription which worked right away.
On Monday March 21st Devin called me at work about 3PM in a great deal of pain. She actually said it was a 10 which is not a number she has used through this entire journey. I rushed home and called Erin at Upenn while I was on my way. She said that I should take her to our local emergency room and have her heart checked and that they had a cocktail that can stop the heartburn. By evening they had ruled out heart and the cocktail wasn't working so they started ruling out other things. The first and only thing they needed was an ultrasound of her gallbladder. She had stones, sludge and was starting to run a fever. After consultation with Upenn it was decided to admit her to Lehigh Valley Muhlenburg and have an ENT and anesthesiologist both check her out the next day to see if they were comfortable doing the surgery. Otherwise it would have been off to Upenn. They both signed off on it the next day so she was off to surgery about 4PM. All went well although the anesthesiologist said that Devin is hard to intubate and she now has a card she must carry telling them the type of scope that should be used. She came home and has been recovering. She is eating and taking her meds by mouth so that she can hopefully get her feeding tube removed in the not to distant future. Next thing is a return to PT to get her stamina and movement in her shoulder back, a PET scan in May and hopefully surgery in early June.
Just a reminder: that the Catasauqua Area Showcase Theater is doing a fundraiser through their Families Helping Families Program. It works like this: Two families are chosen to be recipients (We are one of the 2). In the lobby before entering the auditorium there is a table and jar set up. The audience is asked to donate any amount they would like to the cause. The amount is counted and whatever is brought in, Catasauqua Area Showcase Theater will match that amount. Monies collected at all the performances count towards the total that is matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested in supporting this great organization that is supporting Devin you can order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
Friday, March 11, 2016
Families Helping Families
Hi All,
I just wanted to let you know that the Catasauqua Area Showcase Theater is doing a fundraiser through their Families Helping Families Program. It works like this: Two families are chosen to be recipients (We are one of the 2). In the lobby before entering the auditorium there is a table and jar set up. The audience is asked to donate any amout they would like to the cause. The amount is counted and whatever is brought in Catasauqua Area Showcase Theater will match that amount. Monies collected at all the performances count towards the total that is matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested in supporting this great organization that is supporting Devin you can order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
Have a great weekend and enjoy the beautiful weather.
Hugs,
Rose
I just wanted to let you know that the Catasauqua Area Showcase Theater is doing a fundraiser through their Families Helping Families Program. It works like this: Two families are chosen to be recipients (We are one of the 2). In the lobby before entering the auditorium there is a table and jar set up. The audience is asked to donate any amout they would like to the cause. The amount is counted and whatever is brought in Catasauqua Area Showcase Theater will match that amount. Monies collected at all the performances count towards the total that is matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested in supporting this great organization that is supporting Devin you can order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
Have a great weekend and enjoy the beautiful weather.
Hugs,
Rose
Monday, March 7, 2016
Great test results! 3/7/16
Hi All!
Well the last 10 days were alittle rough. Devin's PET Scan came back with 2 areas of concern. One was the area around her tougue and the other was 2 enlarged lymph nodes on the left side which was cancer free at the time of surgery.
Friday Feb. 26th Devin and I went to Upenn for her to have an MRI and we went again on Tuesday, March 1st for an ultra sound of the lymph nodes and a needle biopsy. They took 3 samples of the lymph nodes. It has been hard waiting but today we got the word that all tests came back negative for cancer!!! To say we are happy is an understatement. Now Devin heads back to PT to get her shoulder stonger and her stamina back. Her next PET Scan in is May.
Thank you for all your prayers and donations they help a lot. If you would like to donate please click here for a link to her Go Fund Me site. Also a theater group in Catasaqua is going to help Devin through their Families helping Families Program. If you like musicals watch for the next blog installment. We will be heading to see "Mary Poppins" at the end of April. I'll post ticket information as soon as I get it!
Hugs,
Rose
Well the last 10 days were alittle rough. Devin's PET Scan came back with 2 areas of concern. One was the area around her tougue and the other was 2 enlarged lymph nodes on the left side which was cancer free at the time of surgery.
Friday Feb. 26th Devin and I went to Upenn for her to have an MRI and we went again on Tuesday, March 1st for an ultra sound of the lymph nodes and a needle biopsy. They took 3 samples of the lymph nodes. It has been hard waiting but today we got the word that all tests came back negative for cancer!!! To say we are happy is an understatement. Now Devin heads back to PT to get her shoulder stonger and her stamina back. Her next PET Scan in is May.
Thank you for all your prayers and donations they help a lot. If you would like to donate please click here for a link to her Go Fund Me site. Also a theater group in Catasaqua is going to help Devin through their Families helping Families Program. If you like musicals watch for the next blog installment. We will be heading to see "Mary Poppins" at the end of April. I'll post ticket information as soon as I get it!
Hugs,
Rose
Thursday, February 25, 2016
2/25/16 - update
Well the ups and downs of a cancer diagnosis continue. Last week we had an appointment with Dr. Weinstein to get Devin's PET Scan results. It was not a good news day. There are some areas of the PET Scan that lit up where some of the scar tissue is and since he doesn't have any other post surgery Scan to compare it to Devin will have a MRI tomorrow and an ultra sound on Tuesday to see if it is scar tissue and not disease. He's pretty positive it's nothing but since it was a large tumor and an extremely aggressive cancer we and he don't want to take any chances. He also cancelled surgery. He would like her to wait 3 months until he can do another PET Scan to compare before Dr. Canaday starts moving things around in her mouth.
While she waits patiently (well maybe not so patiently) Devin will be concentrating on her physical therapy. He will be working on strengthening her shoulder and regaining her stamina. Also she is working toward finally getting rid of her feeding tube which has proved to be a challenge as one of the criteria is maintaining her weight which has been an issue .
Please continue to keep her and us in your prayers as we continue on this long journey of ups and downs.
Thank you all for your encouragement, and for keeping her in your prayers. Knowing you are all rooting for her really helps. She has to go on COBRA for her benefits so that cost and continuing medical bills put a strain on the budget so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
Hugs,
Rose
While she waits patiently (well maybe not so patiently) Devin will be concentrating on her physical therapy. He will be working on strengthening her shoulder and regaining her stamina. Also she is working toward finally getting rid of her feeding tube which has proved to be a challenge as one of the criteria is maintaining her weight which has been an issue .
Please continue to keep her and us in your prayers as we continue on this long journey of ups and downs.
Thank you all for your encouragement, and for keeping her in your prayers. Knowing you are all rooting for her really helps. She has to go on COBRA for her benefits so that cost and continuing medical bills put a strain on the budget so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
Hugs,
Rose
Monday, February 8, 2016
Update 2/8/16 - On the Road to Recovery!
Good Evening All,
We had two appointments this week and things went amazingly well! First on Wednesday we went to see Erin the Oncology Nurse Practitioner. She said that Devin's lesions have healed and the thrush is finally gone! We couldn't be happier for Devin. This clears the way for her to slowly get off most of her pain meds and prepare for her next surgery. She is finally beginning to eat small amounts again too!
Friday we saw Dr. Cannady the plastic surgeon. He too agreed that she is ready for surgery! The big surprise came when he said it can be done as an outpatient procedure. No trach, no days in the hospital and no new skin graft. The graft for her mouth has been in her new tongue all along. He will make a horizontal incision across her tongue and with some "fancy stitching" he will release her tongue which has been tethered to the gum line, and he will make a floor to the right side of her mouth. At the same time he will fix the scar on her neck where she had the infection which has really been painful and limiting the range of motion in her neck. As you all can imagine we almost danced out of his office. The surgery will be on February 23rd as long as her PET scan is clear. The scan is this Wednesday, 2/10 and follow up with Dr. Weinstein (the boss) is the following Wednesday 2/17. Please send lots of prayers that all is good.
After surgery she will have speech therapy and continue with PT. PT so far is going well but there is still much to be done to get her shoulder strong and improve the range of motion in her neck. The nerve injury is really throwing of the balance that "normal" muscles keep which isn't helping. She is also having a great deal of jaw pain and stiffness from all of the scar tissue from both surgery and radiation. Her PT said that her jaw is currently asymmetrical which will only lead to more pain down the road. She has a plan to address it, however this is on hold until after surgery to prevent from any further infection, thrush or tissue tearing from occurring which would just push surgery back further. As you can bet we don't want that to happen!
Thank you all for your encouragement, and for keeping her in your prayers. Knowing you are all rooting for her really helps. She has to go on COBRA for her benefits so that and continuing medical bills put a strain on the budget so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
xoxo Rose
We had two appointments this week and things went amazingly well! First on Wednesday we went to see Erin the Oncology Nurse Practitioner. She said that Devin's lesions have healed and the thrush is finally gone! We couldn't be happier for Devin. This clears the way for her to slowly get off most of her pain meds and prepare for her next surgery. She is finally beginning to eat small amounts again too!
Friday we saw Dr. Cannady the plastic surgeon. He too agreed that she is ready for surgery! The big surprise came when he said it can be done as an outpatient procedure. No trach, no days in the hospital and no new skin graft. The graft for her mouth has been in her new tongue all along. He will make a horizontal incision across her tongue and with some "fancy stitching" he will release her tongue which has been tethered to the gum line, and he will make a floor to the right side of her mouth. At the same time he will fix the scar on her neck where she had the infection which has really been painful and limiting the range of motion in her neck. As you all can imagine we almost danced out of his office. The surgery will be on February 23rd as long as her PET scan is clear. The scan is this Wednesday, 2/10 and follow up with Dr. Weinstein (the boss) is the following Wednesday 2/17. Please send lots of prayers that all is good.
After surgery she will have speech therapy and continue with PT. PT so far is going well but there is still much to be done to get her shoulder strong and improve the range of motion in her neck. The nerve injury is really throwing of the balance that "normal" muscles keep which isn't helping. She is also having a great deal of jaw pain and stiffness from all of the scar tissue from both surgery and radiation. Her PT said that her jaw is currently asymmetrical which will only lead to more pain down the road. She has a plan to address it, however this is on hold until after surgery to prevent from any further infection, thrush or tissue tearing from occurring which would just push surgery back further. As you can bet we don't want that to happen!
Thank you all for your encouragement, and for keeping her in your prayers. Knowing you are all rooting for her really helps. She has to go on COBRA for her benefits so that and continuing medical bills put a strain on the budget so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
xoxo Rose
Thursday, January 14, 2016
1/14/16
Well happy 2016 to you all!! We have kicked 2015 to the curb and are looking forward to a much better 2016!!
I'm sorry I really should update the blog but time just gets away from me. We ended up having 2 appointments last week. On Tuesday we saw the physical therapist. They are working on her lymphedema already. It looks like there is some nerve damage to her face, her ability to make expressions is compromised although not really noticeable and they need to work on range of motion and strengthening her neck. There is nerve damage to her shoulder. She will need to learn to protect her "wing" and new ways to lift and reach. Strengthening and range of motion will be worked on there as well. Linda her PT is amazing, we are blessed to have met her and have her directing Devin's physical therapy. She will go for PT every Tuesday and Thursday for the foreseeable future with the goal of returning to work. Right now we have appointments for the next 8 weeks.
We saw Erin the oncology nurse practitioner on Wednesday. Devin's speech improved some this week although she still can't eat any better and continues on the pureed food and the feeding tube. She lost some more weight as she had a stomach bug over the holidays and that now has slowed her healing as she has lost 20% of her total body weight since this whole ordeal began. She has thrush again :( which is also slowing the healing process. Erin is not unhappy with Devin's progress although she thought it would be quicker. We still have not been able to get her off any meds although some of the dosages are a bit lower. Erin said that we are in uncharted territory. That Devin is the youngest and had one of the most invasive surgeries she had ever seen. We compounded the problem by then hitting her with very high doses of radiation before she was fully healed. Heaven only knows what the next surgery will bring. She says this is a marathon and not sprint although we get tired of hearing that. Dr. Lin the radiation oncologist sent a letter to Dr. Weinstein thanking him for the privilege of working with Devin and that he was going for a cure and feels she will do well. So that's about where we are at the moment. Pray the weather holds so we can make all our February appointments!
Devin and Owen did adopt a puppy from the puppy party. Ellie came to live with us on 12/30. She is a cutie, as you can see, and quite a handful! She is keeping us all on our toes and has made Devin's days much more eventful!
Thank you all for your encouragement, the many cards and gifts and for keeping her in your prayers. Knowing you are all rooting for her really helps. Medical bills are beginning to mount so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.
Wishing you all a wonderful 2016!
Hugs,
Rose
I'm sorry I really should update the blog but time just gets away from me. We ended up having 2 appointments last week. On Tuesday we saw the physical therapist. They are working on her lymphedema already. It looks like there is some nerve damage to her face, her ability to make expressions is compromised although not really noticeable and they need to work on range of motion and strengthening her neck. There is nerve damage to her shoulder. She will need to learn to protect her "wing" and new ways to lift and reach. Strengthening and range of motion will be worked on there as well. Linda her PT is amazing, we are blessed to have met her and have her directing Devin's physical therapy. She will go for PT every Tuesday and Thursday for the foreseeable future with the goal of returning to work. Right now we have appointments for the next 8 weeks.
We saw Erin the oncology nurse practitioner on Wednesday. Devin's speech improved some this week although she still can't eat any better and continues on the pureed food and the feeding tube. She lost some more weight as she had a stomach bug over the holidays and that now has slowed her healing as she has lost 20% of her total body weight since this whole ordeal began. She has thrush again :( which is also slowing the healing process. Erin is not unhappy with Devin's progress although she thought it would be quicker. We still have not been able to get her off any meds although some of the dosages are a bit lower. Erin said that we are in uncharted territory. That Devin is the youngest and had one of the most invasive surgeries she had ever seen. We compounded the problem by then hitting her with very high doses of radiation before she was fully healed. Heaven only knows what the next surgery will bring. She says this is a marathon and not sprint although we get tired of hearing that. Dr. Lin the radiation oncologist sent a letter to Dr. Weinstein thanking him for the privilege of working with Devin and that he was going for a cure and feels she will do well. So that's about where we are at the moment. Pray the weather holds so we can make all our February appointments!
Devin and Owen did adopt a puppy from the puppy party. Ellie came to live with us on 12/30. She is a cutie, as you can see, and quite a handful! She is keeping us all on our toes and has made Devin's days much more eventful!
Thank you all for your encouragement, the many cards and gifts and for keeping her in your prayers. Knowing you are all rooting for her really helps. Medical bills are beginning to mount so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.
Wishing you all a wonderful 2016!
Hugs,
Rose
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