Well we had a good run ... 10.17.2020

Well, we had a good run.

On October 10th, I was officially diagnosed with COVID-19. And angry isn’t a strong enough word for how I am feeling, but it’s what I have. I am angry because I have been so overwhelmingly careful, not only for me, but for my loved ones and my patients. Slowly allowing people into our bubble and trusting life a little more each day has been hard, but something we have all be trying to do. I have questioned every atypical ache and sniffle for months, convincing myself I was joining the positive statistics in all of those moments. I isolated from family and friends, got tested as needed, decontaminated myself when I came home from work, and carried hand sanitizer and a thermometer like they were a lifeline. To be fair, I, like many others, have had moments where I realized I could have done better keeping my distance, or didn’t wash my hands fast enough. Although; none of that changes the fact that I am mad, because no matter how careful you are, it can absolutely still happen. And now the repercussions feel enormous because I am a wife, a daughter, a sister, a healthcare worker, a friend, a coworker, and so on.

This disease is a terrorist. It shows up under the radar when and where it chooses, disguises itself as a friendly interaction and attacks without its victim knowing, until it’s too late to protect yourself, or those you’re with. And the fact that our leadership has continually downplayed this pandemic is what I blame. Because if 100% of our country did their part, we wouldn’t still be in this cycle. We would all be feeling significantly safer and healthier, both physically and mentally, right now, and I wouldn’t feel the need to put my thoughts to writing to relieve the massive amount of stress and heaviness I feel after getting that phone call.

If, by some miracle, we had all acknowledged the gray area, that while not bad for all, COVID-19 can have significant implications for our friends and neighbors, and it was in our power to keep them safe, by staying home when sick, wearing a mask, washing your hands, and complete prompt contact tracing. Simple steps to allow the whole to remain safe and healthy. Well, then healthcare workers like myself wouldn’t be at their stress limit on a daily basis. Burnt out. Irritable. Exhausted. Easily succumbing to illness. But no, instead, we have been forced to prioritize. Wealth over health. Financial stability to meet basic needs over safety precautions to prevent debilitating illness. That has become the American way. Me before you because I matter more. Me not wearing a mask is no one’s business but mine and if I am sick I hold no responsibility to anyone but myself. That is where we are, and now I have nothing but time to sit here and try to find some peace.

Although, we can’t forget that there is another side to this issue, and that is the coverage and inescapable flow of endless information regarding COVID-19 over the past several months, which for me personally, is producing a level of anxiety that I am not sure I have ever felt. The unknown is scary, knowing the widespread impact of my asymptomatic period could be either massive or minuscule but either way is out of my control, and my only solace is that I know without a doubt that I did everything right to protect my patients while unknowingly walking among them with this virus. However, being told for months that contracting this virus could mean the end of my life or the lives of my parents or patients, and seeing people daily still fighting it’s effects months later is certainly not helpful towards recovery or lessening feelings that I could have prevented it all some how. Which is a feeling I have feared for months. I recall talking with coworkers about how frightened I was to carry the guilt of the impact my positive test would have on those around me because of the nature of my job. I’m sure it’s a feeling that thousands of healthcare workers and family members have had to come to terms with; and now it’s my turn.

I choose to believe that this is something I will overcome, and that because I work for a place that requires constant protective equipment, my patients will also be okay, since my mask hopefully protected them. I choose to believe that COVID-19 doesn’t know who it’s messing with this time and that statistically it is likely that I will come through okay in a few days or weeks with no long term symptoms, but I am still frightened. My medical history is complex, I don’t need to remind you all of that, which is why we have worked so hard to keep this disease out of our home.

I know some will have questions about my experience with COVID so I’m going to outline it a bit for you. One thing I can say for sure is that for me, it came on fast and furious. I was my normal self, constantly congested, tired and hoarse at the end of a day and typical cervical headache, surviving oral cancer does all of that. And within hours, things became very different. I took my usual allergy and pain relieving medicines in the morning, allowing some reprieve, but soon my chest became heavy and tight, a heaviness that didn’t feel normal just from walking down the hallway. I began with some shortness of breath on my way out to the car, bad enough that I sat to catch my breath and calm my racing heartbeat before dialing the hotline. By the time I was in the office waiting for my test two hours later, I had a fever, a dark colored productive cough, a burning headache behind my eye (a very different kind from my normal), heaviness in my chest and sharp pain with every breath. That fast.

Thankfully, because I have a history of pneumonia, they did a thorough exam to make sure I was pneumonia free, swabbed my nose and sent me home with orders for round the clock mucinex, humidifier, lots of rest and fluids. If my fever climbed, symptoms worsened or my test was positive, the plan would change. My test came back positive on Saturday and they started me on steroids, and recommended supplements such as vitamin C, D, and zinc and scheduled a telehealth visit with my PCP who ordered a chest X-ray and some bloodwork to be thorough. The next few days were much the same minus the fever, and thankfully with everything lessening to general fatigue and a chronic cough, shortness of breath with activity that shouldn’t cause it, along with some mild GI symptoms, back pain and loss of my taste and smell.

My two week quarantine being nearly finished, I’m very hopeful I am through the worst of it. My taste and smell are returning, my cough is still running the show, and the fatigue and shortness of breath isn’t happening quite as fast. Although none of that changes the fact that the balls are all still rolling downhill, and other people are still impacted by my positive test. To be honest, the stress I feel is the most significant symptom. And that is not me. And I don’t know yet how to move past it or let it subside, aside from letting time pass. I feel mad, and then responsible, and then beat myself up for feeling guilty and go back to mad. Thank God for the most amazing husband on the planet keeping me grounded and calm in my “red-headed” moments.

So, I beg you all. Be careful, wear your mask, stay home when your sick, wash your hands, and get your flu shots! So that exhausted, overwhelmed and recovering healthcare workers like me don’t have to keep reliving this cycle. And so patients like me don’t have to struggle with self blame and fear on top of everything else Covid-19 gifts us with. 

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