5 Years! Now what???

5 years! Now what??

For some reason, this has been the most difficult blog post for me to write to date. Not that I don’t have anything to say, we all know the day that happens it’s because I’m six feet under, but more because I haven’t been motivated to sit down and put my thoughts in order. They are jumbled and cloudy, and truthfully I’m exhausted by overthinking the various challenges happening day after day. Not only that, but my concept of time is changing and it seems like I don’t realize how fast things are moving around me with days and months blurring together, the changes in routine are probably to blame for that one. Part of it is also that the past 5 months have been a bit overstimulating and unpredictable thanks to the state of our world so my health has not been in the forefront of my mind, which makes me thankful that something could be placed on the back burner during a time of chaos. Although mainly, I believe my lack motivation is because I have spent the last five years focused so heavily on my health because I had no other choice and these milestones seemed to come so slowly and warranted so much celebration. This one came fast and is heavily shadowed by the current circumstances surrounding me. Don’t get me wrong, I recognize what a massive achievement it is to be five years cancer free, I suppose I am just dealing with the fact that life is still, and will continue to be, forever changed by it.

There is also a part of me that is mad, like many others, that this day can’t be the true celebration I had envisioned because, well, COVID of course 🤷🏻‍♀️. My anger is not at the virus, it’s just doing what it knows to do, it’s at the people in my community that have chosen to go on with life “as normal,” completely unencumbered by the severity of this illness, all at the expense of others who are trying desperately to keep us from drowning, because “masks don’t work” and “I’m not sick so it’s not my problem.” Attitudes and actions like that are the ones that have and will continue to take special moments like weddings, graduations, and yes, cancer anniversary celebrations, away from those who deserve their day, while placing more risk on an already exhausted population of healthcare workers. Believe me, I understand social isolation, boredom, lack of control, it’s all terrible for your mental health (see blog posts from year one if you want a reminder), and there are patients like me who have lived or continue to live that reality each and every day. It’s scary, and easy to submit to at first, but then, slowly but surely we become fatigued by the limits and find it easier and easier to justify our carelessness. That carelessness not only sets us back as a society trying to build some type of safe, new normal; but then devalues the hardship and sacrifice of many others who have worked tirelessly to get us this far. So, if you are still with me I beg you to consider these 3 things: wear a mask; try to swallow the pill that the world doesn’t revolve around you and you alone; social media does not make you an expert so it’s time to learn the science of checking sources. Also, over the course of the last five months I have seen fingers, toes, heels, and noses turn blacker than night and prepare to fall off, I have seen young, healthy people recovering from paralysis and I have seen once independent men become unable to recall where they are or what day it is, all because of COVID 19. That could be you, or your son, or your parent, who suffers the long term impact, so try to remember that the next time you want to complain about wearing a piece of cloth on your face. This is your chance to be on the right side of history and you are squandering it, making life for people like me, a healthcare professional and a patient, so much more difficult. And if reading this is making you feel angry or offended, maybe some self reflection is needed 🤷🏻‍♀️.

I promise I’ll hop off my soapbox now. For those of you that are still with me, here is the latest on the life of Devin. Because of the pandemic my medical needs had all been postponed and rescheduled a few times, but things are finally somewhat back on track. Here’s the low down...

My Oncology visit was unremarkable which is the gold standard in cancer remission ☺️. I am looking, sounding and swallowing as well as he could have hoped. I will see my oncologist in January following one final set of scans and if all is well I will be set free from Dr. Lin. Not that he isn’t wonderful, but getting rid of the oncologist is certainly at the top of any patient’s list. I still need to schedule follow ups with my ENT and plastic surgeons so I am not sure what the plan for them will be yet.

I also saw my primary doctor this month after a battery of tests related to the damage from my radiation treatment. My carotid artery ultrasound and echo of my heart were normal and I’m not currently at a risk of stroke, but this is something we will have to watch forever because I will be prone to plaque build up in the arteries of my neck courtesy of the hardening from radiation. My thyroid is finally functioning at a normal level, but this will also be a constantly changing process. Otherwise I am as healthy as I could hope to be from a general wellness perspective.

Lastly, I have been continuing with the laser treatments on my jaw, head and neck with good results. I still have pain, but the headaches are less often and I no longer clench my jaw with fatigue. I am still having some spasms in my neck and jaw pain at the end of the day which impacts my speech and eating so we are going try returning for some physical therapy and a new topical cream along with the laser treatment to see if the combination will help get me to where I want to be. Again, a process that feels endless, and I worry about reaching a point where I run out of options and pain medicine is the only route available, which is not something I am going to accept willingly. To be frank, I’m tired of always checking to make sure I have my pill pocket in my purse so a fun day out isn’t ruined by my pain or so I can make it through a longer day at work. I’m so tired of the panic that can happen in my mind if I forget it for fear that I won’t be able to eat my meal or talk my way through the day if the pain chooses to be significant. I know there are many of you that suffer from chronic pain, so feel free to send me your knowledge. I can genuinely say I have tried everything I can think of and will hopefully soon be adding medical massage to that list, can’t hurt right? But I’ll take whatever advice I can get at this point. I am also in the market for a new dentist, the one I have been using is a bit of a drive but was worth it for the connection to UPenn and having a dentist with oral cancer experience, but he recently left the practice so there is no reason for me to do the drive now. I am looking for someone with oral cancer experience so if you live in or around the Lehigh Valley and know of a good one please pass along the name!

Other than the medical piece, life has been as you may expect for a healthcare worker. COVID-19 has turned our lives upside down, but we are coping and taking it in stride as a team. As Pennsylvania overcame its first peak, my daily routine at work returned to a more normal pace, with added rules and protections of course. I have been tested twice, both thankfully negative. Fingers crossed the need doesn’t present itself again. Otherwise I am filling my time with Owen and the dogs, family and friend time when we can gather safely, lots of books, taking an online class or 2, working out, dining in and cooking together, diving in to every true crime show/podcast we can find, and learning to garden, which it turns out we are pretty good at ☺️🙌🏻!

Tonight we will celebrate with some seriously AMAZING food and I will try to look forward to the day we can throw a real party with everyone who has supported me through this crazy journey. Your well wishes, prayers, gifts, cards, and messages just checking in and wishing me luck never go unnoticed and make me feel beyond blessed!

Please stay safe and healthy and follow all the recommendations so we can celebrate together someday soon!

<3 Devin

Happy Occupational Therapy and Oral Cancer Awareness Month!

Happy Occupational Therapy and Oral Cancer Awareness Month!

Up until now I have been pretty calm and logical about all of this. I have done my part personally and professionally to protect myself, my loved ones, and my communities. But seeing people around me continue to sabotage my efforts due to their own selfishness and ignorance has become overwhelming and infuriating. So for my own mental health, I decided this was a good time for a large dose of knowledge and reality since most of the world should be sitting at home looking for ways to fill the days. So here you go, feel free to indulge me and read away...

Typically April is a month of celebration for me! Being Occupational Therapy Month, it’s a chance for us to celebrate each other, be celebrated by our partner disciplines, and educate the world on what we can help our patients to accomplish no matter what the circumstances. April is also Oral Cancer Awareness Month which is a chance for me to celebrate thriving after surviving such a horrendous disease. Because of our current healthcare climate, this year is less of a celebration and more of a time of reflection for me on where we came from as a discipline and where I fit in this crisis as both an occupational therapist and a cancer survivor.

As most of you have seen all over social media, being in healthcare during a pandemic is overwhelming. None of us were prepared for this level of illness, and all of us are afraid. There is a human drive for self preservation, making me want to make the choice to stay home and stay safe from the chaos and unknown more than anything. However, there is also a sense of responsibility to fulfill the commitment I made as a professional to serve to the best of my ability during a time of need. Add in the complexity that I am a patient myself and things become very challenging. I feel good, I have the unique ability to empathize with the loss my patients experience which usually enhances their own recovery journey, and I am more than capable, but I am also compromised with my history of aspiration pneumonia which could potentially put me in that “at risk” category. All of that means I will show up where and when I am needed, but it also means that I need to be diligent to protect myself. I am not immunocompromised, and I am not a cancer patient. If we told every healthcare worker with any preexisting medical history to stay home, there would be very few left to help save the world. We live and work everyday in settings that require self sacrifice and ultimately placing patient needs over ourselves, so it’s not in our nature to sit back and watch as the world crumbles around us.

I have gotten and seen questions about why occupational therapy is essential right now. So that is something, especially this month, that I feel the public should know. Our profession was brought into the forefront of the world during times of great challenges that caused high numbers of the population to develop disabilities, such as world war 1, polio and tuberculosis epidemics, mental health crises, and the industrial revolution resulting in poor work conditions and traumatic injuries. Occupational therapists stepped in to help those patients heal and adapt to a new way of living. We still do that today, just on a much larger scale, treating patients from birth through the entire lifespan continuum, with the goal of maintaining or achieving independence in the daily tasks that are vital or meaningful to them, such as brushing your teeth, driving a car, holding your child, working at your favorite job, writing your name, shopping for groceries, taking a shower, and so on. The list doesn’t end. We are trained to break down a task, any task, based on the physical, social, psychological and cognitive skills required to perform it, and help our clients succeed at that task, regardless of the roadblocks in place. It’s the most incredible and rewarding career I could have hoped for, allows me to witness amazing accomplishments and inspires me everyday to think outside the box, but, it is also now putting my life at risk every day. And the personal question I have to continue to reflection on is, is it worth it?

Just because there is a pandemic, doesn’t mean the rest of the world will stop. People will still have car accidents. Babies will still be born too early. Children will still have autism and learning disabilities. Grandmas and grandpas will still fall and break hips or hit their heads. People will still have heart attacks and strokes, and get diagnosed with cancer. Dementia will still be a reality everyday for many families. And when any and all of those things happen, we need to be there. To help your dad recover the use of his hand after his stroke so he can hug you with both arms. To help your son learn how to sit still long enough to read his favorite book with you or understand how to cope with a change in valued and necessary routines. To help your wife build up her endurance to go back to work after a battle with cancer. To help your mom recognize you again and figure out what lipstick is for after her brain injury. To help your grandma remember where her bathroom is on a daily basis or learn to bathe herself again. None of this can go on hold, and if it was your loved one, you wouldn’t ever want it to regardless of what was happening in the world.

In addition to real life moving forward, we also have to consider all the new patients that will come into our lives. COVID-19 is ravaging our communities and the people that survive hospitalization will be weak and physically broken. And their families are not able to be there to support them.

Someone needs to be there to remind them what they are fighting for. Someone needs to be there to make sure they can wipe themself after toileting, put on their own socks or safely get out of bed without passing out when they are off that ventilator so they they can go back home to you. Those things don’t just happen, there are people like me that give them the tools and time they need to succeed at living after such an illness. What’s the sense in saving a life if there is no quality of life left to live? That is what we do, we give the quality back after the world has tried to strip it away. If that isn’t essential, then I don’t know what is.

So, for the love of all things holy, stay home if your life allows it. Wash your hands. Don’t touch things at the store that you don’t have to. Wipe off the nozzle at the gas tank. Stop playing basketball with your buddies. Postpone your family Easter egg hunt. Is it a sacrifice? Sure. But that is your job right now and the best way you can contribute to people like me who are just trying to get through each day safely and symptom free so that we can be there to support you in your time of need.

Also, if you are an essential worker or part of a health care community, practice some self accountability and hold yourself to the same standard that we are holding the public to. If you know you have been exposed or are having symptoms, be honest and choose to protect your coworkers and clients over getting a full paycheck. I know furloughs and loss of pay are frightening, but you could save so many lives and relationships by making the right choice.

To all my fellow therapists, I miss your faces in my life each day and I am so proud to be a member of your tribe. I know when life goes back to normal we will all feel a little more grateful for all the day to day challenges we had come to despise before the world turned upside down. I miss my patients, my routine, my safety. I miss insurance authorizations, crazy schedules, meetings over lunch. I miss planning for future programs and to-do lists a mile long. I miss my normal. We may not be filling our typical roles right now and need to be flexible constantly, but that is what we do best! ❤️

Be healthy. Be safe. And please be smart!

Hello All! Update 3.18.2020

Okay all, it’s been a bit as usual! The last six months have been full of life in many ways, good, difficult, fun, hectic, everything it’s suppose to be I guess. But since there is lots of downtime right now I figured it would a good chance to write up an update.

After I got my clean bill of health, as far as clean goes for me anyways, we took off running into a fall full of weddings, our first anniversary, more dog training classes, vacation, appointments and more. Owen recovered well from his wrist surgery and is back to bowling! Otherwise everyone is happy and healthy and hopeful that this whole corona virus mayhem ends very soon!

As for the medical side of things, things have been status quo. The suppression plan for my thrush management is working really well and I have been thrush free for a few months now. My thyroid is still a roller coaster and we are still working to find the right dose to manage my hormone level. Dental needs are what they are, frequent, annoying, and just overall a part of life.

My pain and the way it impacts my function continues to be my main concern. Throughout the fall and into December, life was a bit hectic all around. Work was crazy and things were very busy, so my headaches and jaw pain were through the roof when my botox injections from early October wore off. I was extremely reliant on medicines, stretches, pain rubs, essential oils, all the things, to get through the day. It was an exhausting few weeks. By the end of the day I couldn’t look down without pain and had to prop my head on the back of the couch to do my sudoku puzzles or read a book spasm free. We went to my physical medicine doc at Penn in January to re-evaluate my plan and needs. I opted to wait on my next round of injections. They are simply a band aid to cover up the pain caused by my damaged muscles and nerves, not a long term solution to fix the problem. Ultimately that solution may never exist and bandaids may be all I have access too. Nonetheless, I was given the go ahead by her and my Oncologist to trial laser treatments to help with my pain.

Okay. Buckle up. This gets a little complicated. Up until now, deep tissue laser isn’t something I could try because of my cancer history. Those of you in healthcare will know this, but, if there is the potential that active cancer cells are residing in a certain area, deep heat will increase the blood flow to those cells and promote their growth. Pretty much the equivalent of adding fertilizer to planted seeds that already have water and sunlight. That would be bad news all around of course. So we needed to ensure that my carcinoma wasn’t just hiding, but actually defeated. As we learned from my surgeon in August, this risk of this cancer returning from the same tumor source is nearly zero. So, with the amount of pain I am limited by on a daily basis, those odds were beyond good enough.

So thanks to a great recommendation, I had a consultation with an outpatient clinic closer to home that was willing to see me after talking with my doctors. The treatments center around my neck, my jaw and my head, spending a specific amount of time and strength on each area. They use different heads, like a large roller ball or a smaller one to target my jaw. It’s about 20 minutes of sitting still, eyes closed, relaxation with this warm piece being moved all around those areas. The warmth is artificial to make it more enjoyable, so I feel no heat from the laser itself. At this point I am going for treatment twice a week and am about 6-7 weeks in. The challenge is there is no “protocol” for someone like me, shocking I know. So we are moving forward completely based on results. Unfortunately that requires me to be very in-tune with how I feel on a day to day basis and what’s changed for the positive, even little things, which isn’t as easy as it sounds, especially if my daily routine changes at all.

After my very first treatment, I had an extremely significant realization. I didn’t have ANY pain for a solid 15 minutes. Over the past five years I don’t think I have fully recognized the level of discomfort I have been living with on a daily basis.

The more severe pain of headaches and jaw/neck spasm which impact my ability to talk, eat, work and live in general were such a focus the the day to day chronic pieces seemed to just become normal. Until they were gone. Even though is was brief, if gave me a reminder of what life was before cancer and what I hope one day I might have back.

Since that first visit, the changes have been much more gradual but very much present. My headaches are less frequent and less intense, letting me get through my work day and be able to focus and not feel like I just want to shut my eyes for the ride home. My neck spasms are rare in most positions and I don’t have to lay my head back on the couch out of necessity at the end of most days, although these moments can still happen. My jaw is the most notable change. I have been able to go days at a time using only over the counter alleve and not turning to my stronger pain medicines, including days that are full and I am actively talking all day long. This is enormous. Getting off these medications has been the goal and the injections have not helped that along. Of course I am not there yet, but the results at this point make me open to continue. Unfortunately there are a lot of unknowns because, as we are all aware, I am completely abnormal. There is no way of knowing if or when the improvements will plateau or if they will last long term. And the research for laser treatment on fibrotic tissue is limited, especially for head and neck cancers. So that just means I keep doing what feels like the next right thing and hope for the best.

I was suppose to have a lot of my general follow ups this month at Penn, but with the current events all have been postponed. My work life is very light also, which is good and bad. Good Shepherd is really trying to find all opportunities for us to help in areas that have to remain open, and I have decided to use some of the extra time when nothing is available to take a few online classes I have been holding on to and try to enjoy the time with Owen and our hairy kids who are very happy to have the daily company.

It’s amazing to me how fragile our world becomes when something like this happens, and how it sheds a light on the true nature of the people around you. (Shout out to the crazy people that took all the bread 🤦🏻‍♀️). Some people are home indefinitely right now, and many others that do not work essential jobs should be. I’m sure if this was happening when I was actively sick, I would be terrified and mad at the social gatherings that still seem to be happening. I wouldn’t only be fearful of Covid-19 itself, but also the potential shortage of the supplies I relied on to survive and remain infection free. Or delays on shipment of those items because of backlogs. Additionally, as a healthcare professional, I shouldn’t have to ration protective and sanitation supplies needed to keep myself, my coworkers and my patients safe, because people are losing their minds and buying it all just to choose to not stay home with their stock piles.

If you or someone you know is complaining about social distancing, hoarding a year’s worth of toilet paper, or pissed off that their favorite bar is closed, feel free to refer them here. I will be happy to educate them on how much control they have over how long this lasts and how beneficial the time can be if they make it so. I lived nearly 18 months full of days with just me and my dogs while family worked. Those days were full of sickness, pain, naps, and medical needs initially. But soon they became focused on my physical and mental health when I couldn’t yet return to work or enjoy going out to social events, but felt well enough to add life back into my time at home. It’s all doable if you make it so. It’s not the end of the world if you can’t hang out with friends or wander the mall or eat out for a little while. I promise.

My piece of advice when you want to complain or go out unnecessarily, live your current life like a cancer patient lives every day of theirs. Even if you don’t feel like it’s a big deal to you, it can be to those around you. And you have the power to help.

Of course, wash your hands and don’t touch your face. Stay at home unless you need to go to the store or pharmacy.

Practice good self care. Sit outside. Take a deep breath. Go for a walk. Exercise if you want. Take a nap if you feel like it. Find new ways to fill your time. Get started in your spring cleaning. Take a class. Prep some meals. Read a new book. Foster a pet. Learn a craft. Meditate. Play and cuddle a little extra with your dog. Call your Mom. And most of all, be thankful for what you have. Don’t panic about what you can’t control, and do your research and be proactive about the things you can control.

Life is different and routines have changed. It’s a scary time in the world. But life isn’t over and we will be okay and stronger for it when this passes. However, if you act like you only care about you, people will remember you for that.

Okay, I’m off my soap box. Thank you all as always for taking the time to read and care. Here’s to five years free this summer!

Be well!

Xoxo Devin

Hello!!

Hello!

I know many of you have been checking in because of so much time between posts. As usual I apologize 😂. I have had a lot of follow up appointments this summer as well as some new medical issues arise and figured I may as well wait until they were over to finally post an update.

So last I left you life was a little crazy with the addition of Marshall and I was in a bit of a limbo with the plan for the dying bone in my jaw and my pain management. Marshall is adjusting, he’s an awesome dog, just a little rough around the edges still 😂. He will get there, learning to be a dog is tough work!

Early April I had another round of botox injections in my head, jaw and neck in an attempt to improve my pain levels. It helped some, but the side effects posed a new challenge. Picture this: I’m out in the back yard playing fetch with our wonderful new dog, toss the ball in the air, look up to catch it, and my head chooses to fall backwards like a damn pez dispenser. I lost most of my strength in the muscles that help me lift it and had to bend over at the waist to bring my head back upright 🤦🏻‍♀️. Funny now, not so much in the moment. This is botox though. The whole point is to paralyze the muscles to stop the spasms that cause my pain. With how severe my muscle fibrosis is from radiation, it’s hard to tell what muscles are firing when and how much I rely on some of that rigidity to function. This time we hit some muscles that I apparently need in order to manage the weight of my own head. So after two more months of physical therapy and not much more of a benefit to my pain, I learned a new lesson. Living the life a bobble head made for some funny moments, but also made me realize how heavy one’s head can actually feel 😂. So now I am off botox until October to let it all leave my system and we will re-evaluate what I need. Meanwhile, stretches to manage my headaches and reminding myself of my posture is the best I can do.

I had another CT scan of my jaw and follow up with Dr. Cannady the plastic surgeon in early August and the news was just what I needed to hear. The osteoradionecrosis of my jaw bone is stable, meaning since my last scan in January there has been no additional bone death or degeneration that would warrant surgery anytime soon! I will see him in a year for another check in to see how things are going, sooner if needed or God forbid if I have to have another tooth pulled 😂. Fingers crossed for none of that!!

Now on to the new medical issues. In May I came down with a pretty rough case of oral thrush out of no where. For those that don’t know, I am highly prone to thrush now because of the damage done by radiation and removal of half my salivary glands. Thankfully though I haven’t had too much trouble since I finished radiation. Whenever I am on antibiotics I take my probiotics and have been able to avoid it. Thrush is probably one of the most uncomfortable conditions I have experienced in the last four years. My mouth starts to just feel off. Food doesn’t feel or taste right and foods that shouldn’t burn start to. By the next day my whole mouth is coated in white patches, I can’t taste, I can’t swallow or talk well, and the pain is persistent with no way to relieve it. Thankfully my wonderful family doctor chose to test me for strep throat that day which came back positive and probably was the cause of the thrush. So here we are almost four months later, and I still haven’t been able to shake the thrush for more than a week. I take my meds (multiple have been tried), stay on top of probiotics, limited my sugar, maximized my oral hygiene, none of it seems to matter. Within a week the symptoms build back up and I am back on the phone with the doctor. I have had consults by infectious disease, been tested for Diabetes, HIV and other possible immunodeficiency related causes, all of it negative and normal. Finally I reached out to my support group and found a handful of people with similar problems with thrush years after treatment who have been put on suppression therapy. Basically an anti-fungal medicine every so often to hold it at bay. So that is where we are now. It’s been a very frustrating few months, every time I think I’ve shaken it, back around it comes. I have reached out to my oncologist just to see if he has any thoughts or recommendations so we will see. It’s always something. Dr. Weinstein gave me the name of a dental specialist at UPenn as well that may be able to offer some insights.

Now, drum roll please! Final follow up today was with the man that truly saved my life, Dr. Weinstein. I am officially four years cancer free and for the first time I didn’t have to schedule any scans for heading in to year five! I will see my oncologist in March and Dr. Weinstein in a year. After that who knows what the plan will be. As each day of this journey passes, the weight of the word “cancer” lessens and the fear of return diminishes. Of course I know the challenges ahead are far from over as life has already proven, the side effects of this cancer will be forever with me to cause trouble, and the potential of cancer in other forms in the future is always a possibility. For now though, my reality is that of a 30 year old head and neck cancer survivor.

I will see the dentist every three months forever, or at least for as long as I have teeth 🤭🤣.

My thyroid doesn’t work. Another gift from radiation.

Sometimes I get tired for no reason.

I am missing half of my tongue and soft palate.

The word King is almost impossible for me to say because my Ks and Gs suck.

I speak slower now because I have to plan my words ahead of time to pick those that are easier to say.

I don’t remember what it’s like to swallow food normally or what my voice use to sound like.

I drool unexpectedly and often 🤤.

I have dry mouth and too much saliva to manage with half a tongue. Figure that one out.

I have chronic, daily pain.

When I touch a certain spot on my back, my face tingles 🤷🏻‍♀️.

My neck spasms when I shave my legs.

And I rely on pills to live a “normal” life.

All of that is forever. And that’s just how it will be for some reason, I hope to know what that reason is one day.

But for now, I celebrate being four years cancer free, doing life with my amazing husband, a strong support system of family and friends, three imperfectly perfect dogs, the best job and coworkers I could ask for, and many plans for a long future ahead!

Thank you all for still checking in and for all the prayers! This isn’t a journey that is simple or fun to share, but you all make it easy for me to be open about all of it and I am grateful for that!

Lots of love,

Devin

Lot's of News 3.17.19

Happy Sunday all my favorite people :)!

I realized I left you all on the edge of your seats back in January and thought it was time for an update!

January was a very tough month for me, more emotionally than physically. The new issues with my jaw bone and the tooth extraction site continued to knock me down for a little while. Not having answers about whether a bone in my face was slowly dying inside of me was almost worst than waiting for cancer news for some reason. I felt abandoned by my periodontist at a time that in my mind I needed urgent help and answers. I respect her choice for me to move forward, and looking back I know she made the best professional decisions at the time. However, the lack of assistance with helping me find proper follow up angers me for patients who don’t have the resources available that I do. There is no contact or connection between the dental and medical worlds, I couldn’t even rely on her and my surgeons sharing notes. That places far too much pressure and stress on patients who have enough of both of those things, which is how issues are missed or become more problematic than they should be. Not to mention I have to reexplain the last year of my life at every physician appointment because they don’t share the records with who I give them permission to share with. It’s a waste of everyone’s time. Additionally, my stress increased as I pictured new changes to a lifestyle I have finally somewhat become accustomed to and that made me so angry. Thankfully my amazing plastic surgeon Dr. Cannady always knows how to bring me back down. I saw him the end of January. He had me get a CT scan of my face to get a measurement of my jaw bone and see if there are any fractures that would require surgery to happen sooner. My bone on that side is visibly effected by what they call osteoradionecrosis (ORN), or bone death related to radiation, which I already knew, just not to what degree. He said I will most likely need surgery to fix the problem at some point in my life, but it could be 3 months or 40 years down the road. There is also a possibility because I am young and still in my 5 year healing period that my bone will regenerate and heal on its own. So now we watch and wait. I see him again in April to talk further about my jaw, as well as the fact that I still have a tooth hole that needs to close up before I lose my mind and the chronic inflammation causes additional trouble with my remaining teeth. My family doc is also still working on my ever troublesome thyroid levels, but that will happen in time.

February came with a visit to Dr. Zheng, my amazing pain doc, to talk about the next round of Botox and the plan ahead. The Botox injections have helped tremendously with my headache management, but the jaw pain continues to be an issue. I see her the first week of April for my next round of injections at a higher dose and will probably return to physical therapy for a little while. We are also looking into options for clinical trials involving laser treatments to see if I would qualify or benefit from that at all to improve my healing, range of motion, blood supply and pain down the line. All good steps.

Owen and I have been talking for a few months about getting a third dog but the timing hasn’t been great. Times changed, so the end of February the Darby Clan welcomed a new addition, our two year old (ish), lab/something mix, Marshall! The first week was a bit rough for everyone, but we have settled into a routine, everyone is getting along better than we could have hoped and he is truly wonderful. He is In desperate need of some manners, but otherwise has been the best decision we could have made for our family right now! 

Now for the final bit of news! I had my 3.5 year scans a week ago and saw my oncologist this past Friday. I continue to be cancer free and thriving according to him :). I will see him in one year, hopefully without scans if my August ones look good (although we have had that plan before so I’m not holding my breath 😂). He also gave me his blessing to find all the clinical trials to help with my pain as I wish as long as I fit the criteria of the study. My worry was that typically lasers increase blood flow, and blood flow can stimulate growth to potential cancer cells in the area. I am far enough out now that he feels that we would have found them by now so as long as I am within the trials criteria the risk is no greater than the cancer coming back randomly. So we will see where that takes us. The next few months we focus on more pain management, seeing plastic surgery again to get a status update on my jaw and plan for my tooth, and all the other maintenance living my life requires: every 3 month dental visits, 3 month thyroid blood work and follow up, physical therapy and anything else that pops up in between. Otherwise I am pouring all of my time and energy outside of work and volunteering into our perfect Darby pack and making Marshall the best dog he can be. Along with getting Ellie’s bratty self in line!

As always, thank you all for caring and for your continued support. This life has become anything but simple, but I am surrounded by people and a purpose that make it all worth it, even during the frustrating times.

Lots of love ❤️

Devin

2019 Update no cancer but a rough road

Alright everyone, prepare yourselves for this one. I know you are use to me delivering all the news, good and bad, wrapped in a shiny silver lining with a positive plan to move forward with, but this may not end up being one of those kinds of posts. To be honest, I’m over all of it. I’m over the doctors visits, the mouth poking and prodding, the medications, the injections, the pain, the fatigue, the whole package. I could pack it all up tomorrow and toss it into the nearest body of water without any concern for it’s well being as it travels to its next destination.

3.5 years. That’s more than a tenth of my life now that I have lived in this body following my initial squamous cell carcinoma diagnosis. And I am totally and completely over it. I find myself more envious of those that get to live a “normal” life, being jealous of their medical and life challenges wishing they were my own rather than what I have to face on a daily basis. I’m not saying I’m out of the fight, not whatsoever since thankfully for me and all of you that is far from who I am. I will never let it win. I’m just having a moment where emotionally I need to acknowledge how insanely frustrated I am with the whole damn thing. I want to wake up tomorrow, pain free, ready for a long day without having to check my pill pocket, pack my protein shake, and make sure I don’t leave the house without all of my many oral hygiene needs. All things a 30 year old woman shouldn’t have to think about unless it’s her time of the month. But instead, I will wake up with all the same needs I go to bed with, plus everything a typical 30 year old needs to deal with, and that’s just how it has to be. Tonight I will wallow, feel anger, cuddle my wonderful husband and fur babies and tomorrow I’ll take a deep breath and find the silver lining again to allow the steps I have to take to begin.

So the question you’re all probably wondering: why after so many months of happy wedding bliss am I so frustrated? No the cancer isn’t back, there’s the only silver lining I can muster tonight. Granted- it’s a big one. The picture is just so much larger than that at this point that celebrating being cancer free is hard. Yes, cancer free is the most important step to keep living, but what the quality of that life is should be equally as important.

The last time I left you guys things were good. The wedding was perfect, the honeymoon was beyond all imagination, we were enjoying life as newly weds, my tooth was healing well and I had a few health things to keep following up on. Well here we are two months later and lots has happened.

November was uneventful, aside from physical therapy I was feeling good and we enjoyed a nice thanksgiving. Then it all went to hell in a hand basket. The first or second week of December I had a few appointments, dentist for my 3 month cleaning (for life thanks to radiation) and a CT scan of my chest to check on the nodule in my lung they found over the summer. Dentist went well with no concerns so mom and I headed to Penn for my scan which also when quick and easy. Until we were headed home. Not even a half hour after my scan my phone rings, Dr. Weinstein’s office calling, at 330 on a Friday after a test I had that was ordered by him. You can only imagine the anxiety attack that ensued. The nodule is fine, but it turned out my chest CT showed early signs of aspiration pneumonia (from food going down the wrong pipe into my lungs), and they wanted to get me on antibiotics ASAP. It made sense. I’m not great at reading my new body yet, weird shit happens and I reason it away. That week I had been extra fatigued, slight cough, and some night sweats, so the pneumonia made sense. They got me on antibiotics for ten days and I felt pretty good. Once I finished that, I had to follow up with my primary care to come up with a plan to make sure it resolved and isn’t an ongoing issue. I will have a chest X-ray this month and see my doc the end of the month to check that and my thyroid levels now that I am on meds. If the aspiration pneumonia isn’t resolved or there are signs of additional aspiration, it will be time to contact my amazing plastic surgeon Dr. Cannady and come up with a plan. After my last reconstruction surgery in 2016 we discussed the fact that at some point the radiation damage to my tongue flap would lead to a loss of function, either in my speech, my swallow, or both. So if I am aspirating food often and not aware of it, that’s a huge sign that it might be time for more surgery with him. Not something I want but something we knew would happen at some point.

Also in December I got my first round of Botox injections for pain management for my jaw and chronic headaches. They went well and have helped my headaches some, but we will probably have to do a higher dose next time for my jaw as I still rely on pain meds to manage that.

So none of that sounds too bad right? Doable. Well then 2019 decided to blow in and screw it all up.

The weekend between Christmas and New Years the area where my problem tooth use to reside started to get red and irritated again. FML. This progressed to signs of infection and I followed up with my periodontist today. After an hour of scraping, suction, drills and lasers, the verdict was in. My jaw bone is weakened from radiation, and each time the tooth hole becomes inflamed or infected, my jaw becomes more compromised and starts to splinter, then the sharp pieces of bone further irritate the tissue around it and it can’t heal, a vicious cycle that all the hyperbaric treatment was suppose to help prevent. So much for that. My periodontist feels that without some surgical intervention at this point it won’t resolve itself and that is beyond her scope of practice. My options were to see an oral surgeon or my plastic surgeon to come up with a plan. I have zero interest in involving yet another doctor, and I have more faith in Dr. Cannady than any other doctor I could find, so the decision is an easy one. Now I will schedule follow up with him to talk about options. What surgery would look like to reinforce my bone, allow my tooth to heal, and to rebuild my tongue flap on the right side of my mouth to improve my swallow and speech.

All of this is a massive pill to swallow for me, and those of you that have been around the past few years know that pill swallowing is no longer a strength of mine 😂. I have made so much progress from 3 years ago, and the thought of backward steps makes me cringe. I will likely need additional pain management, which I have worked so hard to get off of. I will likely need a feeding tube of some kind again, which makes me scream inside. I will also likely need a whole lot of therapy, speech and physical, to get back to where I am now and hopefully better, which i have to find the strength for some how.

Silver lining, no cancer, I suppose I can also add that my husband is amazing and always positive and my family will always take care of me. But that’s all I’ve got. The rest of me just feels exhausted, angry, and frustrated that my mouth hurts too much right now to eat the left over pizza currently residing in our fridge.

I will keep you all up to date as the plans unfold. I’m hoping my surgeon will take some time to come up with a plan and we can pursue this in the spring. So that’s my timeline, and since life has dealt me a big pile of poop, I figure the least the big guy upstairs can do is allow it to happen at a time convenient for me. We will see. He hasn’t been flexible yet so I’m not too hopeful 😂.

As always I appreciate everyone’s support, love and prayers so much, so please please please send them up for a simple fix and fast healing.

Lots of love,

Devin

So Much News

So when I last left you guys, I had just gotten the injections in my head/neck, was being treated for an infection, and we were full steam ahead towards wedding weekend!

So much has happened in life since then and I just need to start off with the largest thank you I am capable of. Owen and I are beyond blessed to have so many wonderful people surrounding us that care so unbelievably much about our happiness. We have felt embraced by all of you with your prayers, well wishes, gifts and love and the word grateful can’t begin to cover it. The wedding was everything we could have hoped for, a beautiful day with a little misty rain and lots of love. All of the planning and images in my head came together just as we had hoped and it became a day that we will never forget! Our relationship has been through more hardship than many see in a lifetime, and thankfully we have come through it more in love and thankful for each other than we ever knew was possible. More photos to follow :) I promise!

After our whirlwind weekend we left for a fantastic honeymoon in Hawaii full of road trips, waterfalls, snorkeling, zip lining, amazing food and so much more! Well worth the wait and so needed for us to just leave reality behind for a little while. Although we missed the pups tremendously, we didn’t want to come back!

Now that we are settled back home and back to real life, here is the news on the medical front...

The infection in my tooth extraction site was drained before the wedding and after two rounds of antibiotics it finally began to heal appropriately. So far so good, I go back to the periodontist in January unless there are any new issues that arise. Who would have believed that one pesky tooth could take more than six months to deal with.

I am still in physical therapy to work on my neck and jaw needs as well as headache management. We are hoping for some more improvement to lessen my headaches and pain overall so that will continue for a bit longer. I saw my physical medicine doctor this week to resume the med adjustment process and continue to investigate new ways to manage my pain long term. We trialed a new Injection in my upper back and neck with a steroid component to break up some of the inflammation and scar tissue. I’m pretty sore today but hopefully it will help more than the last round. I am also waiting for insurance approval to begin Botox injections in my jaw. I’m very nervous about this step, but the only way to know if it will settle the spasms and give me relief is to try. So we will see.

I also followed up with my primary care last week to discuss my ongoing thyroid issues. Because my numbers are all good aside from my hormone level which continues to be elevated from radiation damage, he doesn’t feel getting it controlled should be too difficult. I started a new medicine, very low dose, and will be rechecked in a few months to adjust it as needed. The only new development is that I need to have a carotid dopplar test done. As we know, because of radiation my muscles are are stiff and fibrotic. The arteries in my neck are also at high risk of hardening which can lead to plaque build up and blockages, which ultimately can lead to terrible side effects such as heart attack and stroke. So they will do a study to see if I have any build up at this point that needs to be handled and I will have a follow up screening every two to three years for life to make sure I stay clear in that area. It’s good we are being safe, but the possibilities are frightening. Especially since I see the life after strokes everyday at my job. Better safe now than sorry down the line.

Aside from all of that life is happy :). Owen and I are settling back into life with Max and Ellie and it’s been nice to get a routine back again. Maybe now that the wedding is passed I’ll get started on that book all of you keep pushing me to write. We will see :). I have a CT scan in December to make sure that my lung nodule and possible infection cleared, then nothing significant til March for my next round of oncology visits. Fingers crossed it stays that way and nothing new reveals itself until then!

Thank you all again so much for all of your kind words and well wishes the past few weeks! It means so much to us that so many people are as invested in our life together as we are!