Dec 11, 2017 Latest post:
Nov 15, 2018
On Friday, December 8th 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, 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” 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 will need some eye surgeries. My Specialist will not even consider it until six months post radiation. That would be after September 19. So there’s that to look forward to.
October 1 I have two sedation procedures scheduled. One to laser my scar on my back- it’s a pressure wound turned into a scar. Then I can get my last screw cut out, it’s really close to the center of my mouth.
I might get my first set of teeth in October. 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!
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?)
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.