I have vacillated back and forth about whether or not to post a photo of my mouth and the cavity that the surgery has left. When people see me they tell me how great I look and because they can’t see the damage inside they don’t have any idea of what is going on internally, physically and emotionally. I actually had one person tell me that she thought since the surgery went so well and I was up and around that it hasn’t really been any big deal. This hurt me deeply and to this day she hasn’t ever asked me how I am. I realize it is because of her own fears but it still hurts. I focus on everyone else and their continual love, support, acceptance and empathy for my process.
It has taken a long time for me to come to grips with the feel of my mouth and the foreign objects in it all the time. Then came the day that the objects were taken away. The shock that came with the removal of the obturator, from my perspective, was very disturbing. I was not warned of two important details. One, that I would not be able to swallow and whenever it is out I have to wipe away, with tissue, any saliva that forms and two that my voice would be so radically changed. The hollow, cavernous, flat sounds that came out of my mouth were not mine and it was frightening, to say the least. Emotionally this was a harsh blow. Tears ran down my cheeks as I was trying to take all of this in. My mother, always by my side through every minute of this, kept telling me to keep my tongue down, don’t explore above…. I felt trapped in my own little hell, there was no turning back and this was my new normal. I had to pull it together and learn how to insert and remove the obturator. Somehow I did and for several weeks I draped a curtain over my bathroom mirror so that I wouldn’t see my face, caved in and toothless. Then I moved to peeking once in awhile, very briefly taking it in. And currently, and after lots of pep talks with myself, I have worked up to taking down the curtain and inspecting some of the areas, not quite all yet…. So, because I am at this place of acceptance I feel that I need others to accept this about me. There is enough fear served up with having this hole in my head. I think that sharing my perspective from the inside out, emotionally and physically will help me to accept it even more. I hope it is helpful for you to see the other side. Thanks.
Me, minus the tumor
Harsher yet
The Cover-Up
Just read what’s going on now & my heart goes out to you. It brought back a submerged memory of the time my palate was totally numbed for a test of some kind…and the horrible panic attack the sensation triggered! Awful! One doesn’t realize that not being able to swallow- such an unconscious mechanism- feels equivalent to one’s air supply being cut off, with all the heart pounding that incurs, etc. Don’t know what to say, except it is bound to get a little easier with practice/time. Stay strong, babe. You are much loved and cared for. It will get easier, even though that’s not very comforting right now. Time is your ally and better days will come. The truest statement in the world: This, too, shall pass…
love you so much!
you’re a warrior, and so is your mom- and I mean that in the most positive and loving of ways!
ciao, Bella, Sheila
You do not know me, but my husband had a partial maxillectomy on 12/21. he currently has his opterator wired in his mouth, but it does not cover the hole completely in the back. It is too small because they did not know how far the tumor went back. He was diagnosed with Mucoepidermoid cancer in Nov (also very rare – 3% chance of malignancy.)
I found your blog while I was looking for info/pictures. My husband is unable to eat much of anything and can barely swallow his pills now. When he is able too, I will have him read your thoughts on your blog. That is how he is feeling now. Most people think he is doing well, because he didn’t end up needing the hemi-maxillectomy, but this partial is still traumatic! Thanks for being so honest about things and posting pics, its does serve to help others – even those you have never met! God Bless! ~ Elysia Knudson
Im currently in dental school and while studying for an oral pathology exam I have tomorrow I came across a maxillectomy case to remove a tumor different from the one you had. I decided to google maxillectomy to see if I could find before and after pictures with the restorative appliance. Your blog was the perfect thing. While I dont have time at the moment to read through the whole process you went through I plan to when all my tests are over. Thank you for explaining what you have been going through so that others can understand.
Elysia!
Please forgive my slow response! I only just have found your letter. I’ve not been on my blog in months so here I am. Thank you. I am doing very well and I hope your husband is too, at this point. I understand where he was and there aren’t that many of us around so if I can be of any help or support, please let me know. My e-mail is carriethecook@gmail.com
I am keeping you, your husband and your family in my heart and prayers. We all need each other.
Very lovingly,
Carrie
Thank you for leaving me your letter. Any way I can help is helping me. Let me know if you need anything else.
Carrie
How are you doing now, Carrie?
I am so sorry I have not been to my
Blog for so long! I’m doing very well
Thank you! I don’t know who I’m talking to because I’m on my phone writing this but I appreciate your inquiry. The time has flown by this last year and a half and I keep experiencing the blessings that this situation has gifted me. I hope this finds you in a good place as well. Take care.
Thank you for writing. How is your husband doing now?