Devin and Owen
Thursday, August 31, 2017
Update - 8/31/2017
Well, the day that felt like it would take forever to come is finally
here! After 2 denied pet scans and finally an MRI with an unusually nice
morning at upenn, I'm am currently two years and one month cancer free!
And to top that, I have a near zero chance of reoccurrence at this
point. My cancer was an incredibly aggressive form and would most likely
have shown itself by now if there was any chance that surgery and
radiation weren't enough to do away with it. To say that we are
breathing a deep sigh of relief is an understatement. I feel as though I
can truly begin to move forward from this without a dark cloud hanging
out on my shoulder. I will have this cancers mark on me for the rest of
what will now hopefully be a long happy life. My speech is different. My
scars are large and showing. I still struggle with pain, fatigue,
weakness. But, thanks to my amazing doctors and all of you who stood
beside me, I am here to face it all as it comes. The next steps are
still the same, continue with rehab and pain management to improve my
ability to work and live well all around. I see my plastic surgeon next
week and we may talk over options regarding the nasal tone that my voice
now has because of the change in my anatomy. Truthfully it's not
something that bothers me terribly, but I am open to what can be offered
to help me achieve the best version of myself. My scans will now be six
months apart, alternating between oncology and my ENT. In-between there
will be plenty of time to wedding plan, live life, continue to recover,
and maybe write that book you all keep bothering me about :). Thank you
all so much, as you all know, I wouldn't have made it through this
journey without your prayers and many forms of support. It's still far
from over, but the hardest days are hopefully behind us!
Wednesday, July 26, 2017
Update 7/26/17
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
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
Tuesday, March 14, 2017
Update - March 14, 2017
Hey there everyone :) I hope you are all enjoying the snow day as much as we are!
Lots of big things have been happening so I thought maybe some of you would like a little update...
So let's start with the medical junk because that's the least fun. Remember that odd sore spot on my tongue? I saw both my plastic surgeon and my oncologist, turns out I had a blocked salivary duct, most likely from a stitch or scar tissue, and it is slowly healing. I had my latest MRI last week and follow up with my oncologist yesterday. All good news :) I'm officially still cancer free and after my upcoming pet scan this summer I will only need scans twice a year instead of four. My oncologist feels that I my scans have been clear and consistent enough that he would like to stop doing them as often, not only because they are not necessary, but also because the less radiation I'm exposed to the better. We discussed my current pain issues and the impact they are having on my return to work and social activities. He believes that I am still very early in my recovery and I will continue to experience positive changes over the next few years. Next week I see pain management, and after that no more serious appointments until my PET scan in July! Woohoo 😊👍🏻!
As I shared in my last post, I started back to work at Good Shepherd per diem on the 20th of February. The hours have been slow to build to allow my energy levels to adjust and keep my pain and jaw fatigue under control, all with the goal of hopefully going part time in late spring/early summer some time. So far all of my experiences have been positive despite the big learning curve of entering a new rehab world and managing the curve balls thrown by my body. All of my coworkers have been so welcoming and beyond helpful, I'm so lucky and thankful that I have them to get me through these tough few months of adjustment.
Other than that things have been quiet (Knock on wood 😊). Owen and I have slowly begun some wedding planning which is both exciting and overwhelming at times. Our little family is just looking forward to moving forward toward bigger and better things that don't involve the "cancer" word!
Thank you all again for following my journey and for sending prayers/positive thoughts every step of the way. It has always been felt and so appreciated!
Lots of love,
Devin 💪🏻
Lots of big things have been happening so I thought maybe some of you would like a little update...
So let's start with the medical junk because that's the least fun. Remember that odd sore spot on my tongue? I saw both my plastic surgeon and my oncologist, turns out I had a blocked salivary duct, most likely from a stitch or scar tissue, and it is slowly healing. I had my latest MRI last week and follow up with my oncologist yesterday. All good news :) I'm officially still cancer free and after my upcoming pet scan this summer I will only need scans twice a year instead of four. My oncologist feels that I my scans have been clear and consistent enough that he would like to stop doing them as often, not only because they are not necessary, but also because the less radiation I'm exposed to the better. We discussed my current pain issues and the impact they are having on my return to work and social activities. He believes that I am still very early in my recovery and I will continue to experience positive changes over the next few years. Next week I see pain management, and after that no more serious appointments until my PET scan in July! Woohoo 😊👍🏻!
As I shared in my last post, I started back to work at Good Shepherd per diem on the 20th of February. The hours have been slow to build to allow my energy levels to adjust and keep my pain and jaw fatigue under control, all with the goal of hopefully going part time in late spring/early summer some time. So far all of my experiences have been positive despite the big learning curve of entering a new rehab world and managing the curve balls thrown by my body. All of my coworkers have been so welcoming and beyond helpful, I'm so lucky and thankful that I have them to get me through these tough few months of adjustment.
Other than that things have been quiet (Knock on wood 😊). Owen and I have slowly begun some wedding planning which is both exciting and overwhelming at times. Our little family is just looking forward to moving forward toward bigger and better things that don't involve the "cancer" word!
Thank you all again for following my journey and for sending prayers/positive thoughts every step of the way. It has always been felt and so appreciated!
Lots of love,
Devin 💪🏻
Sunday, February 19, 2017
Update - Febraury 19, 2017
Hi Everyone!
As usual I know it has been quite a while since my last blog post, but that just seems to be how things are happening in this phase of my recovery. Appointments are further apart and less frequent, and my progress is slower, but still significant in our eyes. After the holidays my focus continued to be on physical and speech therapy in order to get me work ready. Unfortunately my PT visits ran low so I went on hold at the end of January to ensure that I had a few visits available to address new issues related to returning to work. Despite the early end, my body improved in all areas, my endurance is the best it has been since before my diagnosis, my shoulder range of motion and stability is significantly improved (although it still has a way to go to be defined as normal), and the radiation fibrosis in my neck causing my muscles to be hard and stiff has begun to relent with lots of massage and stretching. My speech has improved immensely as well and I went on hold with my therapist about two weeks ago. My articulation, breath and saliva management, voice inflections, and endurance of speech is far beyond what it was when I began working with Becky in the fall. She gave me my before and after recordings and the difference was wonderful to hear, especially since my progress is so slow and subtle these days, it made me feel as though all of my hard work was and continues to be well worth the time. Now my progress will depend on my own commitment to the tools I have been given by both of my amazing therapists which I know will be a challenge, especially as my daily life becomes more "normal."
I have also continued to follow up with my pain management team in an attempt to find long term solutions that would allow me to return to work and activities I enjoy. I'm happy to say that my current regimen of medicine and therapeutic exercise/stretch/massage has been more successful than any other we have tried. It's far from perfect, but the trial and error process will continue as my needs change.
Earlier this month I had a follow up with my plastic surgeon Dr. Cannady. Overall it was the most positive appointment in terms of my progress, with him telling me that many of his patients have more tongue volume and mobility than I do, however their diets are much more limited and speech is far less intelligible than mine are. He and mom both say this is a testament to how hard I have worked, and that may be true in part, but I say it is also a testament to the amazing team I have had in my corner, from the most skilled doctors and therapists who gave me all I needed to succeed, to the most supportive family and friends who never let me quit, and still don't :). On the down side, I also had to have a new spot on my tongue checked out that frightened us a bit. He believes I had a salivary duct blockage that caused a small pocket of infection. I will see him again this week to check it out. If it isn't healing appropriately, it is possible that I will have to have a biopsy just to be extra cautious that nothing nasty is going on in there. So please please please send extra prayers this week that all is okay and we can keep moving on in a positive way.
Last but not least, I have some very big and wonderful news! Tomorrow marks my very first day back to work at Good Shepherd since July 27th, 2015! I will be per diem to start, giving me access to flexibility around my appointments and fulfilling my need for shorter shifts until my endurance builds. I am anxious about the unknown, how my body will handle it, how my pain will respond, and how I will figure out where I want my career to go from here. But I have to trust that all of this has happened for a reason and that this step is how I will start to figure that out. So keep the prayers and positive vibes coming my way this week and thank you all for caring so much about my journey. I know it has probably been a tough one to hear about at times, but I appreciate that you all continued to listen and believe I could overcome this mess.
Much Love and Thanks,
Devin :)
As usual I know it has been quite a while since my last blog post, but that just seems to be how things are happening in this phase of my recovery. Appointments are further apart and less frequent, and my progress is slower, but still significant in our eyes. After the holidays my focus continued to be on physical and speech therapy in order to get me work ready. Unfortunately my PT visits ran low so I went on hold at the end of January to ensure that I had a few visits available to address new issues related to returning to work. Despite the early end, my body improved in all areas, my endurance is the best it has been since before my diagnosis, my shoulder range of motion and stability is significantly improved (although it still has a way to go to be defined as normal), and the radiation fibrosis in my neck causing my muscles to be hard and stiff has begun to relent with lots of massage and stretching. My speech has improved immensely as well and I went on hold with my therapist about two weeks ago. My articulation, breath and saliva management, voice inflections, and endurance of speech is far beyond what it was when I began working with Becky in the fall. She gave me my before and after recordings and the difference was wonderful to hear, especially since my progress is so slow and subtle these days, it made me feel as though all of my hard work was and continues to be well worth the time. Now my progress will depend on my own commitment to the tools I have been given by both of my amazing therapists which I know will be a challenge, especially as my daily life becomes more "normal."
I have also continued to follow up with my pain management team in an attempt to find long term solutions that would allow me to return to work and activities I enjoy. I'm happy to say that my current regimen of medicine and therapeutic exercise/stretch/massage has been more successful than any other we have tried. It's far from perfect, but the trial and error process will continue as my needs change.
Earlier this month I had a follow up with my plastic surgeon Dr. Cannady. Overall it was the most positive appointment in terms of my progress, with him telling me that many of his patients have more tongue volume and mobility than I do, however their diets are much more limited and speech is far less intelligible than mine are. He and mom both say this is a testament to how hard I have worked, and that may be true in part, but I say it is also a testament to the amazing team I have had in my corner, from the most skilled doctors and therapists who gave me all I needed to succeed, to the most supportive family and friends who never let me quit, and still don't :). On the down side, I also had to have a new spot on my tongue checked out that frightened us a bit. He believes I had a salivary duct blockage that caused a small pocket of infection. I will see him again this week to check it out. If it isn't healing appropriately, it is possible that I will have to have a biopsy just to be extra cautious that nothing nasty is going on in there. So please please please send extra prayers this week that all is okay and we can keep moving on in a positive way.
Last but not least, I have some very big and wonderful news! Tomorrow marks my very first day back to work at Good Shepherd since July 27th, 2015! I will be per diem to start, giving me access to flexibility around my appointments and fulfilling my need for shorter shifts until my endurance builds. I am anxious about the unknown, how my body will handle it, how my pain will respond, and how I will figure out where I want my career to go from here. But I have to trust that all of this has happened for a reason and that this step is how I will start to figure that out. So keep the prayers and positive vibes coming my way this week and thank you all for caring so much about my journey. I know it has probably been a tough one to hear about at times, but I appreciate that you all continued to listen and believe I could overcome this mess.
Much Love and Thanks,
Devin :)
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