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