Devin and Owen

Devin and Owen

Sunday, March 17, 2019

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

3 comments:

  1. You are one amazing young woman! ��l keep you in prayer for a full, happy, healthy life ahead. ��

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  2. Awww thanks for the update....glad your cancer free...whoohoo...im right behind u...i go for check up in june...God Bless you...your an inspiration to me and mnay others

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