Last week I was in Stockholm. My second night there, I was wide awake at 1 in the morning. It wasn’t jet lag. I was scared and crying.
After getting into bed around 10 p.m., I sent a few emails and then scrolled through Facebook. I noticed a friend had tagged me in a comment about the cold caps I used during chemotherapy to keep my hair. She made the comment on the page of someone I didn’t know. Curious, I went to that page on Facebook, AthleteFightsCancer.
It was within 10 minutes of that click when the crying started.
Generally I am careful about what I read about breast cancer on the Internet. When I have a specific question for Doctor Google, I ask my boyfriend, Derek, or my mom to research it and give me a scientific answer.
Staying away from random, or even targeted, Internet searches about disease is a lesson I learned shortly after my MS diagnosis in 2006. You can be looking for an answer to the likelihood you’ll experience a specific side effect from the treatment you’re on and included in that search result could be something along the lines of “within 10 years of diagnosis, 50 percent of people with MS require the assistance of a cane.” Reading that ruined a whole week for me.
With a cancer diagnosis, I know what lies in wait for me on the Internet can be much worse than stats about canes. So Derek and my mom sift through all the stuff I don’t want to know or read and tell me the answer to the question I actually have.
Internet can be a scary place
But on the Internet, things you don’t want to know can hide anywhere, even a stranger’s Facebook page.
The page, belonging to a professional mountain biker first diagnosed with breast cancer at 35 and then again at 37, had amazingly inspiring tales of how she managed to ride through both of her courses of chemo and her return to racing after each.
The bad stuff is like a tractor beam, though. One of the posts she made during October (Breast Cancer Awareness Month) was about metastatic breast cancer. It included statistics from reputable sources about the disease, which is also known as Stage 4 cancer. (The following are all quotes from the Facebook page of AthleteFightsCancer.)
“There is no cure for metastatic breast cancer.”
“The average life expectancy of someone with metastatic breast cancer is 3.5 years.”
“30 percent of early stage breast cancers will progress to metastatic. This may happen in one year or 20.”
“The entire month of October is dedicated to breast cancer awareness and within that month, metastatic breast cancer gets one day, Oct. 13.”
“My breast cancer has not metastasized beyond my right lymph nodes. Breast cancer is not truly considered metastasized until it goes beyond the breast and nearby lymph nodes. The most common places for breast cancer to metastasize to are the lungs, bones, brain and liver.”
“My breast cancer has not metastasized beyond my right lymph nodes — that I yet know of.”
It was the “that I yet know of” that I couldn’t stop thinking about in Stockholm.
Sorry in Stockholm
Even for Stage 1 to Stage 3 breast cancer — I was Stage 3 — there is no definite cure. There are treatments that sometimes “cure” people, but you don’t know if you’re one of these people until you die from something else. It was on AthleteFightsCancer’s Facebook page that I first learned there is about a 30 percent chance my cancer will metastasize. (I include “about” because it varies on the type of cancer someone has.)
This is a good thing for me to know, and still I wish I didn’t know it.
So it was 1 in the morning in Stockholm and I was alone and crying in my friend’s guest room. Also, I nursed a sore throat and a congested cough. When I wasn’t thinking about the possibility of metastatic breast cancer, I thought this:
“If I’ve got a 30 percent chance of my breast cancer metastasizing, and in the last year I’ve been through chemo, a double mastectomy and radiation, shouldn’t I be able to be healthy in the interim? I’ve had this cold since Thanksgiving.”
From there, I just felt sorrier and sorrier for myself.
I should have opened my computer, gotten on Skype and called Derek for emotional support. But I didn’t.
My thoughts eventually left metastatic breast cancer and the unfairness of a monthlong cold and returned to the last time I was in Stockholm.
It was November 2014. I stayed at the same friend’s house and slept in the same bed. The same rattan lamp cast a warm glow over the same picturesque European streetscape below. That was only 13 months ago, but it was also a lifetime ago.
In November 2014, I had no inkling I had cancer. It was the week before I left for Sweden that the lymph nodes in my right armpit first swelled up, but since the swelling went down a bit after I didn’t use deodorant for a couple of days, I thought nothing of it.
Dec. 19, last Saturday, was the anniversary of my diagnosis. I’m writing this on Dec. 17 and 18. Over a month ago I asked Derek to reserve the 19th for us. I didn’t — and still don’t entirely — know what I want to do, except I know I want to be with him. There will probably be some crying and maybe some laughing. (When you aren’t carrying an inflatable doughnut cushion with you everywhere you go, hemorrhoids are kind of funny.) There will be hope that Dec. 19 one day becomes like June 6 has to me.
It was June 6, 2006, that I learned I had MS. Until 2010 or 2011, that day was marked in my calendar and on it I celebrated in some fashion that I wasn’t yet using a cane or wasn’t yet blind or none of my limbs were paralyzed or wasn’t experiencing any of the other weird things MS can do to you. June 6 was like my birthday and New Year rolled into one. I’d think back on the last year of life with MS, send thanks out to the universe and make goals for my next year with MS. But the last two years, June 6 came and went without me even noticing.
Until Dec. 19 goes unnoticed I’m going to use the day to enjoy breakfast at Picnic and skiing and snuggling. And maybe I’ll even pull out the donut cushion for old time’s sake.
Researching the facts
After I collected my wits from my Stockholm meltdown and was able to look more objectively into metastatic breast cancer, I did. I found the Metastatic Breast Cancer Network (MBCN.org), which works with several of the country’s best oncologists and itself is a reliable informant of the latest facts of the disease. Some of these facts include:
1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ, and that is what threatens life. All deaths from breast cancer are from metastatic breast cancer. Metastatic breast cancer is currently incurable, but treatable. Still, in the U.S. 110 people every day and 40,000 people annually die from it.
2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain. Metastasized cancers are considered Stage 4.
3. An estimated 155,000 Americans are currently living with metastatic breast cancer.
4. Treatment for metastatic breast cancer is lifelong and focuses on preventing further spread of the disease and also on managing symptoms. The goal is for patients to live productive and comfortable lives for as long as possible.
5. About 6 to 10 percent of people are Stage 4 breast cancer from their initial diagnosis.
6. Twenty to 30 percent of people initially diagnosed with early-stage disease will later develop metastatic breast cancer, and this can occur any number of years after a person’s original diagnosis, even with successful treatment, checkups and annual mammograms.
7. Metastatic breast cancer is not an immediate, automatic death sentence. Although most people will ultimately die from it, some live for many years.
Do something about it
The network website had enough statistics to fill a book, but I’ll end with one we can do something about. Out of all of the money spent on breast cancer research, only about 5 percent of it goes towards metastatic breast cancer. MBCN.org has tips for raising awareness about the disease, how you can financially help those with the disease or where you can donate money earmarked for metastatic breast cancer research.
And then, there’s the easiest thing of all that you can do: Keep in mind that any friends of yours who have seemingly successfully treated earlier stages of breast cancer have the specter of metastatic breast cancer looming over them.