Nov 14, 2016 (Monday)

I was seeing an Ear, Nose and Throat doctor (ENT) to try to determine why I was losing the hearing in my left ear. He said, “I’m sure it’s not a brain tumor but I’d really like you to get an MRI before you head out of town.” I called the diagnostic center. They could get me in the next morning at 7:30.

Nov 15, 2016 (Tuesday)

Imaging complete. They let me know my doctor would have results and I could call him in 24 hours.

He called me in six. I’m not sure what he said after “brain tumor”. He called a specialist. The specialist had no openings available but would meet me at his office after surgery on Thursday.

Nov 17, 2016 (Thursday)

Met with the specialist. The kind of tumor(s) I have are called meningiomas. The good news was that they are always benign. The other good news was that there was only one of concern. It was very large (bigger than a golf ball) and precariously located. It had grown so big it was pressing on the brain stem and squishing the middle ear. He called a neurologist he works with frequently. The neurologist cleared his schedule to see me the next morning.

Nov 18, 2016 (Friday)

Met with the neurologist. The tumor was too big for radiation, so we agreed on surgery to remove it. He would go in from the back of my head to try to preserve the acoustic nerve. This way if I wanted to get a cochlear implant at some point, I would be able to restore the hearing.

 Jan 17, 2017

What would ultimately be round one of surgery took place. The team worked for eight hours, at which point my brain had swollen and they decided best to stop. I spent the next 11 days in ICU. Every time I tried to move the pain was too much. The pain I was experiencing didn’t make sense based on the surgery but the team was determined to figure it out. In the end, it was the physical therapist that figured it out. She came in one day to get me to move from the bed to a chair. I tried valiantly to negotiate a nap. She asked me, “Are you really in pain or are you just responding to the pain you think is coming?”. Hmmmmmm. I had to admit to myself that she was right. By the next afternoon I was on my way home.

I’m not clear when the next conversations with the neurologist took place. There was still a lot of tumor left. Typically, with these kids of tumors the consistency is between jello and putty, mine was more like between tree root and rock. A second surgery would be needed, and he recommended going in more directly (through the ear). This meant all the internal workings of the ear would be removed as well as the vestibule.

The significance of this would not become clear to me until after the surgery.

June 6, 2017

Round two of the surgery was performed. Again, this surgery lasted about eight hours. The chunk they took out this time was wrapped around the facial nerves. The nerves were damaged while attempting to remove the tumor.

The removal of the vestibule meant everything related to balance would need to be relearned. I’m still relearning.

The facial paralysis ended up creating additional challenges. The greatest being that the left eye was not blinking. This lack of blinking resulted in the eye drying out and the cornea cracking, leading to a significant infection. The vision is still healing, and we still have hope for more of it returning.

Nov 2017

I met with the oncologist for the first time, as we would be able to remove what’s left of the tumor with radiation. His only concern was that once we started the radiation, the facial nerve regeneration would stop. We decided that every six months, I would get an MRI. As long as the MRI indicated it was not growing and I felt like the nerves are still healing, we would wait.

Aug 2018

I noticed a discomfort in my back as I was watching TV one evening. Lining up a couple mirrors, I saw there was a large bruised area and something that felt like a pimple in the middle of it. I asked my husband to take a look at it – he encourages me to have a doctor look at it.

The next day I went to my GP’s office and saw his Nurse Practitioner. She told me it was a pimple I’d been poking at (had not) and to leave it alone for two weeks and it would go away. This diagnosis worked for me as I was scheduled to go to Germany to meet my new granddaughter.

Upon returning it was still there, but with travel commitments, it was weeks later before I followed up. I called my dermatologist, she just had a cancellation and could see me the next day.

Oct 16, 2018

The dermatologist looked at it and said, “I don’t know what it is but I want it out”. She recommended a surgeon. The surgeon could see me the next day.

Oct 17, 2018

The surgeon had a similar reaction. She said, “I don’t know what it is but I want it out now.” I let her know I’d be leaving town soon for my daughter’s wedding. She made time for me the next day.

Oct 18, 2018

Surgeon removed the growth. All went well.

Oct 26, 2018

My phone rang. It was the surgeon. She had the pathology results – it was a sarcoma and the margins were not clean. That means it was cancer. After some discussion, we agreed it is best that I contact my oncologist so we have one doctor coordinating both diagnoses.

Oct 30, 2018

I met with the oncologist. Because the surgeon removed the sarcoma (seemed like the right thing at the time), we needed to treat the entire incision as contaminated. I would need radiation and surgery. We needed to move quickly as it’s a very aggressive form of cancer. We quickly schedule scans and start planning for radiation. We caught the cancer very early, it had not spread at all from the localized site. As it turned out, my oncologist was part of a sarcoma team. The wheels were in motion.

Jan 23, 2019

I finished radiation.

Feb 28, 2019

The orthopedic oncologist removed the contaminated tissue

March 11, 2019

We got the call the margins were clean.

March 12, 2019

The shock trauma plastic surgeon closed the wound. Next week I meet with the oncologist to plan next steps.