Sunday, December 9, 2012

The C Word You Never Want to Hear and The Week Ahead... 12/10/12


The surgeon didn't have the guts to say the word to me when he told me over the phone that the lymph node was positive. It was a day later when my dermatologist called to see how everything was going. I told her the sentinel lymph node was positive. She said it... the C word we all fear. Mine was skin cancer; melanoma, to be precise. I was 28 years old.

When I was 26 or 27, I had gone to my general practitioner about a mole on my arm. She said it didn't look bad. When I was 28 a dear friend was really concerned about the same mole and asked if I had seen a doctor. I told her I had and she urged me to go back, so I did. This time the doctor decided I should see the dermatologist.

My dermatologist was concerned and removed the mole as soon as possible and sent it to the local dermatopathology lab. The pathologist was concerned and sent it to an expert at Cornell who said it was suspicious enough that I should have a sentinel lymph node biopsy and that an expert at Harvard should also take a look at the mole.

The sentinel lymph node was positive, so I had another surgery where they removed 32 lymph nodes from my left armpit. They were all negative.

At the time the standard therapy for Stage 3 melanoma was a drug called Interferon. It was a month of heavy doses that made you feel like you had the flu, followed by a year of self injections where you didn't feel much better. There was also a clinical trial for which I was eligible and was somewhat geographically close. My oncologist felt that I should undergo treatment due to my young age but admitted that he didn't know what to recommend and sent me to a melanoma specialist at Johns Hopkins University, which is about an hour away. The specialist at Johns Hopkins concurred that treatment would be worthwhile. He explained the clinical trial and recommended that over Interferon.

The clinical trial was at the University of Virginia (UVA), which was about 2.5 hours from us. I would have an oncologist from UVA follow my case through the trial therapy. The therapy was free, the oncologist was not. My husband did tons of research and was able to convince my insurance company to pay for the UVA oncologist who was out of my network.

After a barrage of preliminary tests, including a brain MRI and a CT scan, I was enrolled in the trial. The trial was to see if vaccine therapy was the cure for melanoma. After preliminary testing and bloodwork, I went to UVA every Wednesday for six weeks and received a vaccine injection in my arm and upper thigh. They also took blood samples - 21 tubes one week! By week five the skin at the injection site on my thigh was showing significant immune response. By week six it had ulcerated, and I had to be removed from the study. I missed the last weekly vaccine and two boosters. The ulcer was about 2"x2.5" and took three months to heal. We went through boxes of gauze pads and cotton swabs, as well as many rolls of tape.

That vaccine trial has now closed and the final report has been written. It was not the cure but they learned a lot from it and still believe they're on the right path with a vaccine. I have a common side effect from the trial in that I have itchy red welts regularly form at the injection site. I take Zyrtec every day to prevent this.

In the years since I have had regular check-ups with my oncologist (not the UVA one anymore) and have had regular scans, alternating CTs and PETs. I visit the dermatologist every six months for a check-up.

This past week, at the age of 34, my oncologist released me from his care with a magic trick and a hug! Yes, I said magic trick. At the end of nearly every appointment he would perform a magic trick of some sort; in more recent years it's been a card trick. He's really good with slight of hand. His dad was a pediatrician who always showed kids tricks, so I guess he figured that if you're an oncologist it can't hurt to end an appointment with a little levity. Anyway, as much as I like him, I hope to never see him again.

So, this past week featured the C word everyone likes to hear... CELEBRATION! It feels like this chapter is now over.

What have I learned through this journey?
  • My husband is my rock. He was my advocate the entire time and never missed a doctor's appointment. He researched melanoma and understood all the options. He would give me the condensed versions so I never had to look at the scary statistics.
  • My friends and family are amazing. First and foremost is my friend who sent me back to the doctor; I believe she saved my life. I had visitors, flowers, and meals after surgeries. My mother-in-law was my nurse after the second surgery. My uncle, sister, and a family friend each drove me to UVA for routine visits so my husband didn't miss so much work.
  • The power of prayer. Wow! I had so many people praying for me, and many who I didn't know, but knew someone who knew me. It worked! Praise God!
  • To be thankful for modern medicine.
  • Wear sunscreen and encourage others to do the same. My girl scouts hear this from me so often!
  • Life is good!

Menu for the week of December 10, 2012

Monday: Sloppy Joe's, green veggie
  • prep black beans
Tuesday: Spanish Quinoa (from my nutritionist's cookbook)

Wednesday: leftover pork loin, leftover quinoa salad, and roasted potatoes, parsnips, and brussels sprouts

Thursday: leftover ham bean soup (from the freezer!)

Friday: holiday party #2

Saturday: Slow Cooker Vegetarian Chili


  1. Your husband is pretty gosh-darn awesome.

    And I'm so very happy to hear the new C-word in your life.

    See you in, gasp, just a few weeks.

    1. John - Agreed! He's the best! Yep, can't wait!