Timeline

September 2011: I finally see a dermatologist about the mole on my ear that’s started hurting. Dermatologist removes it and sends it out for biopsy even though she thinks it looks like a perfectly healthy mole and is only removing it because I asked. She wants to be cautious. I just turned 35 years old.

October 2011: It turns out it’s not a perfectly healthy mole. Hello, Betty. I’m referred to a surgical oncologist. Within two weeks, he removes the wedge of my ear that contains Betty. The pathology comes back that the margins were clear and my lymph nodes are cancer-free. My prognosis is considered good. Only a 10% chance of recurrence.

January 2014: The back of the same ear starts to hurt.

April 2014: The back of the ear hurts enough that I see my dermatologist. She thinks it looks like a rash, but because of my history, she takes a sample for biopsy while I start antibiotics.

May 2014: The biopsy comes back with news that Betty has been on the move. I know it’s not a good sign when three types of oncologists (medical, surgical, and radiation) all examine the site and scratch their heads because it doesn’t look like cancer. Two surgeries, an MRI, a CT scan, and a PET scan later, my margins are clear and there are no additional signs of Betty. My primary oncologist recommends I start interferon treatment.

July 2014: Interferon has a 10% chance of eradicating Betty. Those are terrible odds and the side effects are worse. But my prognosis has gone from “good” to “worrisome.” So I begin.

October 2014:┬áThe interferon kills my thyroid, but a nurse tells me this is a sign that it’s working. I also have my first MRI and CT scan since starting. Results are inconclusive. Meanwhile, I start experiencing nerve pain in my ear and all over the left side of my head.

January 2015: The pain hasn’t gotten better, and my oncologist orders another CT scan. He finds a tiny spot that has grown since October.

February 2015: My ear is cut open again and the surgeon does an excisional biopsy on the site. The surgeon says it doesn’t look like cancer. Of course, it doesn’t. Betty has always been a master of disguise, and this time is no different. Betty is back. We stop my interferon treatment since it’s not working.

March 2015: Melanoma excision #3 happens, and I lose all but the outline of my left ear. What showed up as a “speck” on my CT scans turns out to be 7 centimeters of tumor, and this time no one believes the surgeons could get it all. Betty has gone down to my bone (although the bone itself appears to be okay).

May 2015: Doctors can say with 99% certainty that Betty has taken up residence in my lungs. The treatment plan my doctors came up with in April has been derailed. Prognosis has fallen from “worrisome” to “shit.”

June 2015: While waiting to start a clinical trial for a new drug combo therapy, Betty starts attacking the nerves in my face. (Yup, we knew the surgeons hadn’t gotten all of her in March.) I spend all night in two different ERs just for someone to confirm that yes, I am paralyzed on the left side of my face. But the immunotherapy drugs have about a 50% chance of working, and amazingly, the odds are finally with me. Within about a week of getting my first dose, I can move my face again. I have to hope this is a good sign.

August 2015: I get cocky because none of the super bad side effects associated with the treatment have gotten me. Until the day of my last treatment. Eventually, I end up getting that last dose, but I also end up needing a colonoscopy and endoscopy the day after my birthday. Which means I spend my birthday chugging a week’s worth of fiber supplements and eating nothing but jello in preparation.

September 2015: First set of post-treatment scans show Betty is on the run! It looks like the tumor is gone in my ear, and the spots in my lungs have shrunk. Unfortunately, the treatment has caused drug-induced colitis along the way, so I have to stop while starting steroids to fix my digestive track.

October 2015: The regular steroids aren’t helping, so finally I get put on the heavy duty stuff. That does the trick. But I’ll need two doses then to be weaned off the steroids before I can start treatment again.

November 2015: Latest round of scans show all still looks good. Still residual specks of probable tumor in my lungs, but no apparent regrowth. Still waiting to get off the steroids and resume treatment.

Last updated: December 2015.