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!

Hi Everybody :)

Just a quick one for you all to put your minds at ease :).

The CT of my chest came back fine with no evidence of the nodule or any metastasis, however I did have a small bacterial infection in one lung. I was already on antibiotics for a small infection in my tooth extraction site that my periodontist found the beginning of that week, so no additional treatment was needed. I will have a repeat chest CT in December to make sure the infection in my lung clears. I see my periodontist next week to make sure the infection in my tooth extraction site is resolved.

I saw my physical medicine doctor at Penn last week to continue problem solving my pain management plan. I have gotten some great results with physical therapy for my jaw, but continued to end the day with headaches because of the tightness in my neck. We chose to try something called trigger point injections. Essentially they inject a combination of lidocaine and saline into the “knots” that are resulting from or causing spasms and pain, which can inhibit the headaches. She gave me around 20 or so injections throughout the back of my head (eeek!), both sides of my neck, upper back and right shoulder. Some of them were tough to pin point and get the needle into place because of how fibrotic my muscles are from radiation. Imagine sticking a needle in to a block of wood, slow and steady wins the race apparently. She would inject a small amount and massage the area to allow the muscle to detach from the surrounding tissue and loosen up, making it easier all around to inject the rest. My results so far have been positive, fewer and lower intensity headaches at the end of the day. Now we wait to see how long they last. I go back at the end of October to continue trialing whatever we need to.

Otherwise life is all wedding all the time right now! Which is probably why I forgot to update all of you when I got my CT results!

Nothing else new, fingers crossed it stays that way for the next month :)!

3 years and counting!

So I know I have been holding many of you in suspense the last week and figured I’d stay up to post this so you can all wake up a little less worried :).

Mom and I spent literally the entire afternoon at Penn, the downside to having the best doctor on the planet is waiting for him for unreal amounts of time. We always try to remember that three years ago, he spent an insane amount of time with us, which set him behind the rest of the day. So when we are late, it’s because someone else needed him more than I do right now. For the most part, I was given a clean bill of health three years out :). A small nodule on my right lung did show up on my MRI which I need to have a CT follow up scan for but according to him it is likely inflammation from allergies or aspiration and nothing to be concerned about, just taking an abundance of caution. That will be on the 7th of September. If that is okay, I see my oncologist for another MRI in March followed by Dr. Weinstein in August of next year.

In other news, my tooth site is still healing, although painfully slowly. I see my periodontist next week for a little more TLC/laser treatments to help it along. I am back in physical therapy to get my jaw/neck back in order after a decline in my speech, swallowing and pain after my tooth extraction. It’s definitely nice to feel like I’m getting back to my new “old” self. Once physically I’m stronger we will start to trial new medicines again so hopefully, as Dr. Weinstein said today “after the wedding next comes babies!” He also mentioned a good deal about possibilities for using my story as motivation for others through my job, a book, or becoming a motivational speaker. If anyone is interested in managing my social calendar to make any of that happen your welcome to since God knows I don’t have time right now!

Aside from the medical junk that has unfortunately become the normal, life is flying by with less than six weeks till the wedding and lots of plans to stay on top of! Fingers crossed I pass the CT with flying colors and we can move full steam ahead to enjoy our special day and honeymoon worry free! Get those RSVPs in :)!

Thank you all for sticking with us this far. I know some updates are more exciting than others and at times it can be a tough reality to face. Part of my challenge now is figuring out how to use my journey to help others as I live out this hopefully long life one day at a time. I will post a quick one after to CT to put all the curious minds at ease! :)

Lots of love and thanks for the prayers and positive thoughts,

Devin