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