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Reaching out to a Community of Support

It's a Christmas miracle!

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Hello friends and family,

I hope that whatever holiday you've celebrated was wonderful and that you're enjoying some rest today. Last Thursday, I saw my surgeon for my 8 week follow up appointment. I was accompanied by my dear friend, Genine, whom I've known since high school. Dr. Mehra (my reconstructive surgeon) and his nurse practitioner, Amanda, smiled when they walked in the room as I've unintentionally had a different friend accompany me for each follow up visit. I confirmed once again that I have the most amazing, supportive team of friends, family and community around me. They both commented that my spirits seemed so much better than they did 4 weeks ago.

I entered the appointment with some anxiety as I've noticed a new lump on the roof of my mouth over the last week. Rationally, I knew it could simply be this week's version of what my reconstructed hard palate feels like as it changes in unpredictable ways each week as it heals. However, I also know that it was a lump in my mouth that started this whole nightmare. Dr. Mehra examined me thoroughly both visually and with a camera up my nose and down my throat while drinking water (as tricky as it sounds) in order to assess functionality and where things stand with the slit. He poked and searched, but could not find the hole/slit that was there even just a couple of weeks ago. IT IS GONE!! I will NOT need another surgery to repair it!! I think what amused me most about this visit is how shocked Dr. Mehra was. He repeated several times that this is not how he expected this visit to go!! Quite frankly, neither did I!! He confirmed that the lump on my hard palate is simply how it is healing this week and not evidence of more cancer. We discussed at length the issues that I continue to have including some regurgitation out my nose (drink some tea or water and have it come out my nose), intermittent difficulty blowing out my mouth due to air escaping through my nasal cavity, difficulty swallowing mucus that accumulates in my nasal cavity and occasional hypernasal speech. With his thorough examination, he was able to see that my reconstructed palate is not fully functional. He encouraged me to continue working with my speech therapist (he said they are "the physical therapists for this area of our bodies") in order to help the muscles surrounding the reconstruction to compensate for the absence of the soft palate tissue. Since the tissue that has replaced the walnut size tumor/tissue that was removed is not soft palate tissue, my brain doesn't recognize it and can't communicate with it in the same way. He acknowledged that there are no guarantees that functionality will improve but he wants me to do all that I can to help it along. So that's my plan! My speech therapist is lovely and, I feel, very invested in helping me make progress. Dr. Mehra even gave me the green light to eat normally again, with obvious consideration for my mouth's continued healing. Woo hoo!! One of the positive habits that I've developed through this season is having a supercharged, nutritious smoothie every morning (thank you Cyndi Benner). I'm going to keep that habit going but was thrilled to make baked clams and a couple of other dishes for George and I to enjoy together on Christmas Eve, honoring a little bit of the tradition I grew up with. 

I've had so much to celebrate and be grateful for this Christmas. Jesus, my medical care team, and, of course, each of you. Your visits, your prayers, your notes, your encouraging texts, your delivered meals and gift cards, your financial support, your hugs, your presence, your behind the scenes support of George... all of it. My core group of friends and family who immediately, without my knowledge, texted one another every time I had a new need. Blair, Elizabeth, Cathy, Kathy, Amy, Jaclyn, Nicole, Jen, Kelly, Genine...you really have been an army for me. My dad, brothers, Cyndi, Gail (and all her prayer warriors), Brian, Myrna, Julie and Maria: thank you for loving me, supporting me and cheering me on. Thank you Angela for getting George that parking pass. Having that freedom and independence was a gift to him during this time and it relieved my caregivers of one significant job. 

It's tempting to focus only on the progress and not reflect on what I've been through. As a therapist, I know that my body carries the trauma whether I talk about it or not. I know that my healing isn't done, emotionally or physically. I'll be honest, my excitement over the past few days has alternated with some anxiety as I've begun to return to all the stressors that were there before these diagnoses. Getting two cancer diagnoses in a matter of weeks was quite the wake up call. I want to manage stress better. I want to spend more of 2023 connecting with my people, living and laughing. Please hold me to it! I want to be more present and make the most of this gift of a life. I can't snap my fingers and transform these wants into actions overnight. What I can do is take my time and do what I can to heal and grow. I've returned to work and am incrementally increasing how many people I see each week. I've changed my health insurance and hope to begin treatment for my thyroid cancer at Memorial Sloan Kettering in early 2023. For now, I'm going to celebrate the fact that I do not need to face another surgery for the mucoepidermoid carcinoma cancer while I continue to recover and process what I've been through. Thank you for bearing witness as I moved past this major hurdle!

I wish each and every one a wonderful end to 2022 and a new year filled with love, health and joy!! You have my love and gratitude always. 

Susan

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