Dec 11, 2017 Latest post:
13 hours ago
On Friday, December 8th, 2017 after only a few months of pain between my eye and nose I found out I had cancer in my sinus cavity. Things moved very quickly. A biopsy revealed abnormal grown requiring surgery on the 28th of December at Mayo Hospital In Rochester, Minnesota.
After A 16 hour surgery I was very sick for seven days. I required a second surgery due to an infection. I spent 11 days in the hospital before I was released to go home. It was the longest eleven days of my life.
On Sunday, January 6th, 2018, my doctor gave me my final diagnosis. I had an unknown type of clear cell carcinoma. There have only been 100 cases of this type of cancer reported (I’m number 101). My surgeon said that mine was the largest tumor he has ever had the privilege of removing. My tumor is being studied for research. Most of the time it’s nice to be rare, but this time I would prefer to be more common.
I had no idea what I was getting into. I also had to have my orbital socket replaced. I am lucky I didn't lose my eyesight to be completely honest.
After a five to six week recovery from the first two surgeries, I had a long road ahead of me. Starting February 5(my birthday), I had radiation five days a week for six weeks. This took a toll on my body.
May the 4th I saw my Doctor, to schedule additional surgeries to prepare for the teeth/implants they removed during the reconstruction. The screws were set June 26. This surgery went well. I went home at 10:30 pm that night.
The next surgery, repairing the hole in my mouth was attempted August 14. This was an overnight in the hospital. The Doctors found out why I was getting all of the infections. There is a void between my nose and the hardware they installed. They prescribed HBO therapy. The surgery failed. In fact, now my hole is larger than before. The good news is that my dental specialist made me a “retainer” or “obtorator” to cover the hole temporarily. I may always have that hole, wait and see.
Hyperbaric oxygen treatments. That made me cry for two days! Just another thing to eat away at my time. One more reason to have to rely on people to drive me and wait for me. Another medical necessity. Look it up. I’m claustraphobic. I have to sit in a tank for two hours a day, every weekday, for eight weeks. It’s a half hour drive there and another half hour home. I need time to change and get my vitals. Total time per day is around four hours. Twenty hours a week. One hundred and sixty hours! That is not a small smidge of a bit. Do you think that a first grader gets that much systematic explicit direct instruction to learn reading necessities? I’m an Orton Gillingham Language Specialist with a Wisconsin teaching license. Just wondering about that because I have spare, “ think tank time!”
I needed some eye surgeries. My Specialist would not even consider it until six months post radiation. That would be after September 19, 2018. So there’s that to look forward to.
October 1 I had two sedation procedures scheduled. One to laser my scar on my back- it’s a pressure wound turned into a scar. Then I got my last screw cut out, it’s really close to the center of my mouth.
I did not get my first set of teeth in October 2018. HBO has changed that, along with the fact that my mouth has a huge hole in it still( surgery was a failure). Dr. Arce needs to see me after HBO. Then multiple visits with Dr. Salinas, my dental specialist in Rochester. Yay, driving in the winter for a quick two hours there and two hours home. Yahoo. Gmail. Et cetera, and so on and so fourth and fifth! Currently, as of 12-28-18 I hope to get my first set of temporary teeth in January.
Eventually, my team told me, I will be back to “normal” or “looking like my old self,” by the end of 2018. I think it might be 2019 before I get my final set of teeth, but I’m ok with that. It turns out that they really did not know why I continued to get the infections.
I’m looking forward to a day when I don’t need to see medical professionals. You know, once I get all the cosmetic kinks worked out, ie, don’t have any additional surgeries to plan for. (Oh no, what will I do with all my spare time? Write a book?)
Now that I’m almost two years Cancer free(12-2019) I remind myself, “You’ve been through so much.” My tear duct is working. The mucus is no longer backing up. So far no more infections. I’m on a new drug to help with blood flow. We still may try something else. It’s very experimental. They spin your blood so it’s like stem cells and then inject them. Stay tuned. I head to Rochester right before and directly after Christmas. It’s for obtorator stuff and more back surgery. Sixteen hours on the OR table gave my back a huge pressure wound.
I enjoy meeting new people. I had a mammogram on Friday the thirteenth, met a lovely lady who shared her stories of cancer, surgery, and scares in her life. She was such a delight to chat with. These are the moments I came back for. I truly am blessed with so much intimacy. It’s an honor to hold space for you all.
I will never forget the day I sat in Dr. Arce’s office and he told me that I have carcinoma. My husband broke down and cried. The Doctor told me that it was curable. I asked him for a hug. This was when I placed my one hundred percent trust in him and his team. I knew that if I had a chance, these Doctors would make in possible to continue my life.
The other thing I remember clearly was telling the nurse to be sure to tell Dr. Arce to make me look like Wonder Woman. I call myself Wonder Woman because it’s a real true medical mystery and a wonder why I survived. When people hear my story, I am not telling it so they feel sorry for me. It’s quite the contrary. I want to be an inspiration for anyone who is going through a tough time.
One more short story. I told Dr. Arce I was going to get a Wonder Woman tattoo with his initials and my number. I started that plan in April 2018. I finalized it here about four months ago. Finally. I finally was well enough! It is a work of art! I showed it to him. He was so impressed. He asked if I mind showing it to a few surgeons. Then Julie took a picture of us. Months later Julie and Kelly had to tell me about it. He still talks about it. How many Dr.’s have patients with their initials tattooed on them? I’m pretty infamous in Rochester. I’m telling you, I would not be alive today if it were not for Kevin Arce the surgeon.
An update June 16, 2020 I had surgery to remove the death that was, well, dead bone in my face. That is why I was sick for over two years. Radiation killed the harvested bone. The team made some quick decisions while I was sleeping. The front tooth was dead also, which I knew about. They had to remove two teeth and three zygomatic implants were placed along with removing the necrotic bone (75% of the harvested bone) as well as the metal plate. The fistula healed, on its own. This is a medical miracle. All that bone that was dying, and, my body was healing. Currently my lip is extremely raised. This will require additional surgery after I get the Bridge of teeth, providing that things heal properly (I know they will). Now I wear a temporary obtorator with teeth that are for looks and to occupy that area. I can not eat with them or place any pressure that might hinder healing. In other words, I eat very slowly and only limited foods.
I was released on a liquid diet for ten days. That was fine with me. There was a time this year when the tissue became inflamed and due to Covid I was unable to be seen. The obtorator did not fit. I could not eat or really drink anything. For ten days. I managed that just fine. After the surgery I have a great appreciation for cooked carrots mashed up, mashed pears, coffee, applesauce, a few malts, and V8. Thank you very much. It was great!
I asked God for a healing miracle. He gave it to me. It might not have been a new palate. It was not teeth. It was a healing miracle. I will ask the doctors about what they think about that. I’ve been a little bit sick. Now I’m getting stronger every day. I have a coin counter. Each day I wake up and place a coin in the “bank” to count down the days until I start getting the Bridge. I say, “today I’m grateful for...” Some days it’s simply for waking up, for a new day, for coffee, for my family. Simple equals grateful. Many many days I am grateful that I’m not on a feeding tube, that I can walk, that I can shower by myself. I am grateful for my freedom. Please, take a minute and be grateful that you have a palate, teeth, your own face bones. I’m dead serious. Be grateful for what you have that you do not think about on a regular basis.
Update January 19, 2021- I finally had the lip release surgery. This ended up being a ten hour surgery. It went from a living flap to a dissection and reintegration of blood vessels. All of this happened on the outside of my face. Let me tell you, I was carved up more than my jack o lantern. I understand it needed to be done. It was horrible. Something bad happened and Tom Salinas was never brought in to fix his obtorator before I woke up. I ended up with no palate for four days. Now, that would have been fine, had I not had this major surgery and require healing. It was living hell to eat and drink without a palate. Ever done that? I would rather be in a coma. Just airing some laundry here. I am on the road to healing now and the next thing will be a bridge of more permanent teeth.
In closing, Cancer changes lives. Until it happens to someone you are intimate with, it isn’t the same. It changes everything. Watching someone you love go through something like what I went through, puts you in close quarters with agony and defeat. Never give up. You are not alone. I hold space for you and welcome your contact anytime. I mean that. Call. Text. Message. Write snail mail. I am here and I promise to listen, to cry with you, to offer whatever hope I can. You are worth it. Never forget.