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