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

Hello everyone. I hope that you're all steering clear of all the nasty illnesses going around. Now that I'm out and about more, I wear masks into stores and pray that George isn't bringing anything exciting home. He recovered well from his bout with the flu and we're both amazed that he didn't catch Covid as so many of his friends had it within days of one another. I'm seeing more clients this week, some virtually and some in person. I've also asked all in person clients that we both be masked which everyone has been happy to do. I have felt some definite progress in how my mouth is feeling over the last week. The pain is largely gone and the swelling has gone down considerably. While my mouth still feels foreign, I would say that it is beginning to feel less so. What's interesting about that Is that it's giving me the mental space to really think about what I've just physically gone through, meaning the details of the surgery. It's pretty astounding. It seems that everyone else has known that but I've been too busy surviving it to really be able to consider it. It feels reflective of my progress that I'm starting to do so now. I'm seeing both a therapist and a mindfulness coach to help me process all of it in the most healing and productive way possible.  I met with my speech therapist again last Friday. She and her student looked in my mouth and noted that, while it looks "less angry", I continue to lack full functionality. I appreciate how direct she is even though it can be hard to hear the truth. She stated that it is likely that I will never regain full functionality due to the amount of soft palate tissue that needed to be removed. She also noted that the slit remains open. Fortunately, I've had fewer episodes of full blown regurgitation out my nose. Unfortunately, I continue to notice nasal rattling and have difficulty swallowing when I experience nighttime congestion. This is one of the big reasons that I'm very wary of catching any bug that will cause major congestion. Eventually,I know I will cross that bridge. I would prefer that it happens when I am fully healed and my soft palate is as functional as it's going to get. I'm curious as to whether my surgeon will be closer to a decision about next steps regarding the slit when I see him on 12/22. When I saw him last in November, he stated he would wait for a full 12 weeks of healing before he makes a recommendation regarding how best to address it. Knowing that it is still open leads me to believe that I will likely require some sort of surgical intervention. My prayer is that, if that is the case, it will be a relatively simple one. Thanks to George's quick recovery from the flu, he was eager for us to "have an adventure" and go cut down our own Christmas tree. As any parent of a teenager knows, unless you absolutely have to, you do not turn down a request to spend time together because you are rarely their first choice anymore. On 12/3, we trekked up to Jones Farm and found the perfect tree for us. We took turns cutting it down and dragged it on a tarp to the area where they wrap and tie it to the top of our car. George then found a small local family diner for us to have dinner. I wasn't sure what I would be able to eat but wanted this to be the full memory he was asking for. I was intrigued to find stuffed cabbage on the menu. My mother and her mother both made delicious stuffed cabbage so it felt like a loving nod from them. My hope was that the cabbage and ground meat would be just soft enough for me to manage once cut up into tiny pieces and they were. Just as important, it tasted just like Grandma's! Another long, slow meal which I savored and celebrated. George and I were both exhausted at the end of the day but so happy that we went ahead with our Christmas adventure. I'm still mostly eating pureed and liquid meals with some soft foods thrown in to give that slit every opportunity to heal.  I hope that each person reading this gets to enjoy some holiday adventures of your own! Thank you so much for being on this journey with me. Much love, Susan

Hello friends and family! All things considered, I'd call this a good week. George and I spent Thanksgiving with dear friends (thank you Kathy, Steve, Adam and Sarah). George's boss at Wildacre Rotisserie was kind enough to make me a batch of gluten free gravy so that I could enjoy a little turkey. My doctor's office said it was ok as long as I made it as soft as possible... thus the gravy. I cut it into small pieces, smothered it in gravy, and savored every single, tiny, bite. It took a long time to eat it but, oh my goodness, was that a wonderful meal! The gravy and the turkey were both delicious and I cheered when it was done simply because I was able to eat it. I felt so grateful for the friends around that table, my continued progress, and the ways that friends and family have and are still carrying me through this season. God has been so generous with the people He's placed in my life!  George began to feel unwell on Sunday night and was diagnosed with the flu on Tuesday. I'm walking around our apartment in a mask and washing my hands like it's my job. Hopefully, I can avoid getting sick. So far, so good! I am eating a little more soft food but am also continuing to make morning smoothies and eat the soups that people have generously provided. We used a gift card to order sushi Monday night. It was manageable when cut into small pieces and was such a treat. My mouth continues to feel tender and I'm reluctant to do anything that might do harm so I'm in no hurry to shift my diet too drastically. I'm down to 2-3 doses of ibuprofen/tylenol each day and am seeing slow but steady progress as far as swelling is concerned. A colleague shared a podcast the other day that discussed our brain's need to update after physical or emotional trauma. It really resonated with me and I'm working on helping my brain accept my new mouth. I'm noticing less regurgitation and am praying that it may be evidence of healing. I still notice the nasally rattle and other ways that air is escaping into my nasal cavity. I'm waiting to hear back from my surgeon as to whether I can begin intraoral myofascial release therapy. Either way, I'll see the speech therapist next week to continue other therapies. I'm scheduled to see my surgeon again on December 22nd. During that visit, he'll see whether the hole in my soft palate is closing at all. I've been visualising it closing on its own and using the Insight Timer app to do cancer specific meditations which I've found calming and helpful.  My energy level is improving although I still very much feel like I'm building my strength back. I saw three clients (virtually) yesterday and will see a couple in person (masked) today. Easing back into work gradually definitely feels right and necessary. I'm so thankful for everyone who has donated to the Carelines fund. You have made returning gradually possible so that I can fully heal while preparing for whatever is to come next. Meal delivery has also been so helpful! George and I have appreciated every meal. I know that this is a busy season for all. Friends have suggested that meal delivery would be helpful for at least another couple of weeks and I agree. If you can help here is the link: http://www.SignUpGenius.com/go/409044ea5a72da5fe3-susan As far as visiting is concerned, please feel free to text or email me directly if you'd like to get together. My time with every friend has been a healing gift, one that I would love to keep going. 

Hello everyone! It's been a week of both progress and challenges. My pain continues to subside and become more manageable. It is mostly localized to swollen areas behind my front teeth and, in a new twist, in my teeth themselves. I'm now able to manage it with 3-4 doses of ibuprofen per day. Swelling in my cheek has gone down considerably while swelling in other areas persists. I began to experience some new symptoms last week, which I learned yesterday at my speech and swallow evaluation are due to the fact that my "newly constructed palate'' is not fully functional. My soft palate is not rising to prevent air from escaping to my nasal cavity when it is supposed to. As a result, I'm belching when I drink or eat (sorry), have a rattling in my nasal cavity at times when I speak and sometimes have a hard time blowing air out my mouth without it also coming out my nose (making it hard to blow with any strength). Today, I had another follow up visit with my surgeon's nurse practitioner to discuss these new symptoms. I was told that healing can take 12-16 weeks and that we need to wait and see whether my functionality improves. The opening in my soft palate has not changed. I'm scheduled to see Dr. Mehra again on December 22nd. The option of another surgery or other interventions remains on the table. I try hard not to think about them.  I continue to be told by friends that I sound just like my old self. That is good news and, at the same time, it is not reflective of my experience. I hear the rattling in my nose and feel my tongue hitting the roof of a very foreign mouth. I don't quite sound the same to myself. I'm struggling emotionally in some ways but am doing my best to take care of myself with that. I've had wonderful visits from friends and that definitely helps. I'm planning on returning to work part-time next week and am hoping that will feel like progress and not be too taxing.  To end on a humorous note, George asked me last night why I was watching the series I was watching on Netflix when I had seen it just a couple of weeks ago. I have absolutely no recollection of watching this series but George insists that we watched the last couple of episodes together. When they say that it can take a few weeks for anesthesia to fully leave your system, they're not kidding! I've felt like there are gaps in my memory from the first two weeks after my surgery, and this confirms it!  I want to wish you all a very Happy Thanksgiving! I am so thankful for the incredible love and support that I have received during this season. I'm thankful for each one of you! Especially those in "Susan's Army"! I genuinely don't know where I'd be without each of you and I love you very much!

Hello everyone. I’m doing ok. Not great. Not terrible. The pain is becoming more manageable although it is at its peak first thing in the morning and later in the evening. I’m pretty tired of being on a liquid diet but I have been given no end date so I continue to make the best of it. My dear friend, Jaclyn, has been experimenting with creative recipes that meet the requirements set forth by my nutritionist. It’s an effort I’m tremendously grateful for. I’m equally grateful for all the meals/Grubhub cards that have been given to us. George has made it his mission to eat each one :) My two greatest challenges right now are adjusting to what my mouth feels like (along with daily episodes of regurgitation through my nose…yes, it’s just as uncomfortable as it sounds), and learning how to truly rest so that I can truly recover. To be honest, my mouth just feels gross to me right now and I’m trusting my doctors when they say that my brain will adjust to the new landscape and it will feel normal. i have a speech/swallow evaluation on Monday which I am looking forward to. I’ve been told by friends who see me regularly that I sound more like myself each time. For me, speaking feels different due to the ongoing swelling and I can hear it in my speech. I look forward to any and all help! I’ll know I’m recovered when I can return to singing at the top of my lungs to the radio while driving as I love to do. One of the ways that I know that George and I have a unique relationship is that he never complains about this. Sometimes he even joins in :) Georgie, our 10 year old cockapoo, came home yesterday. I’m hoping our walks will help me regain some strength. And her constant need to be snuggled by my side can be quite therapeutic too. Thank you all for your love and support. I’m blown away by it, quite frankly. I’ve loved receiving emails from friends whom I am not in regular touch with. If I haven’t responded yet, I promise I will. Those emails are another form of therapy for me…good old fashioned connection. So, please don’t hesitate to drop me a note at susansrecoveryteam@gmail.com  As a reminder, I don’t see comments and replies left on this website. So much love to all of you! ~Susan

Our new companionship schedule kicked off this weekend with Jaclyn Tyler visiting 10:30-2pm on Saturday.  Here are Jaclyn's notes from their time together: I arrived at Susan's at 10:30am at her request. She worked on some emails to her patients until just before noon, then we took advantage of the fine weather and went for a walk at Tod's Points which lifted our spirits. We sat on a bench chatting half way through the walk. Went back to her place and chatted until around 2 while she ate some soup. She was going to take a nap when I left. She talked about how she felt so much better after her doctor's visit this week and said that her biggest thing right now is getting used to the way her mouth feels. She explained it feels like a wad of gum is stuck to the roof of her mouth.   These visits are so very helpful for Susan's mental and emotional state... If you have time in your schedule please sign-up using this link:  https://www.google.com/url?q=https://www.signupgenius.com/go/409044EA5A72DA5FE3-susan&source=gmail&ust=1668480700355000&usg=AOvVaw3v28MYpK9S7eIKAKAauJjT">https://www.signupgenius.com/go/409044EA5A72DA5FE3-susan      

After a couple of episodes of nasal regurgitation I had a follow up visit with Amanda, Dr. Mehra’s nurse practitioner. She was wonderful. I got to explain the emotional trauma of the bleeding episode the first night in the hospital to her and then we had a good long talk about recovery and healing. I spoke my mind and I felt heard.  So much about my mouth feels foreign right now so it is very hard to know whether I am actually healing. She helped me understand that, within a matter of weeks or months, my brain will recognize the new landscape of my mouth as normal. It is possible that the hole in my soft palate will heal itself!!!!  they’ve pushed the appointment where they’ll decide what to do about it out to 12 weeks. First they’ll let everything heal and let the tissue mature and then we’ll decide what is needed. Options are: 1. It healed itself and nothing more needs to be done. 2. A one day procedure where they stitch it up and i should heal quickly 3. More extensive reconstruction which they are highly doubtful of being needed. Dr. Mehra stopped in and was so excited by the progress I’d made in a week. I feel so encouraged and relieved and I believe in my team at Yale again. That in itself is nothing short of a miracle. I also spoke to a nutritionist this week. Don’t be jealous but I have to eat Hagen Daz twice a day as it is essential to keep my caloric and protein intake up while I remain on a liquid and puréed diet. I will start speech therapy soon as well. The bottom line is that I can get back to the business of resting and recovering without worrying about further imminent surgery. Amanda also said that soon we’ll get to the point where they'll put my Thyroid Cancer on the front burner and this will be put on the back burner. That will be the next leg of the journey. Thank you all for lovingly being in this journey with me. Please remember that if you’d like to respond, the best way is through the dedicated email address: Susansrecoveryteam@gmail.com

George was diagnosed with Bronchitis, which is contagious.  He is on medication and quarantining in his room.  This has created some challenges, as Susan is now caring for him while she is herself recovering.   The hole in the roof of her mouth continues to be a concern for her.  She is returning to the doctor on Tuesday for another look at it.    

After a truly wonderful birthday (it’s funny how cancer realigns what makes a birthday wonderful), my sweet George woke up with a fever this morning and is now quarantined to his room. We’ll get into the doctor as soon as they can take us and I will remain masked at all times around him. I am now sleeping through the night which, of course, is a good thing. The downside is that I woke up this morning with the pain around the entire roof of my mouth at a 10 out of 10. I’m just not at a stage where I can wait 7 or 8 hours to take medication for it.  I’m already rethinking how to manage that better.  Please pray that we sort out what George has and that he recovers quickly. Please pray that I do not catch it!!  In spite of all of this, I still continue to feel like one of the most blessed people in the whole world. I could not be surrounded by a more loving, smart, determined and caring group of people. Also, just as a reminder, if you’d like to comment or communicate, please email me at susansrecoveryteam@gmail.com
Sending love to all of you!

Today was Susan's birthday.  She marked the day with a visit from her Dad & Myrna, drop-in visits from several friends throughout the afternoon and a birthday cake celebration with a small group at day's end -- lots of things that felt like normal after 10 days of so much that was so different!  Here's a photo of her looking radiant with George after we all sang happy birthday!