Frequently Asked Questions (I’m including some questions you may be wondering but are too polite to ask)
How are you feeling?
As of this writing, I’m 1.5 years out from treatment and I can unequivocally say that I’m feeling… eh. I’ve learned that cancer doesn’t stop when treatment ends. The mental fallout can be long and ugly. The physical toll doesn’t evaporate. Fatigue can linger for up to a year. I get sick all the time, even though my blood counts are totally normal. These things are all treatable, by the way, but that means more appointments and stuff to do when you’re ALL DONE with goddamn appointments. Other than that, I’m physically great. My surgeries went amazing (thanks to Michelle Specht and Jonathan Winograd). Advocating for a fan-tiddly-tastic surgeon and plastic surgeon made a huge difference in my physical and mental outcome and I urge anyone with cancer to give this your fullest attention.
I will say that NOT having chemo and radiation while having hair to color is AMAZING.
Where are you going for care?
Mass General’s Cancer Center. I love it there so much. Here’s why: the doctors are amazing, my chemo nurse was so nice and awesome, the support offered to patients and families is top-notch, the facilities are gorgeous, and I never have to wait for my appointment. You know Mass General is doing something right when you feel like a VIP on your way into chemo (ok, exaggerating a little but only a little). Oh, one more thing… the view from the Cancer Center is stunning. The hallways are lined with beautiful glass windows so you can gaze out at Boston. I took this picture from a Cancer Center hallway. The State House dome is in the upper-left quadrant of the pic.
What was your treatment plan?
In Dec. 2012, I started 12 weekly chemo infusions of Taxol and Herceptin. I then had a modified radical mastectomy with immediate breast reconstruction on April 19, 2013, two days after the Boston Marathon bombing. Later, in August, I started four bi-weekly chemo infusions of doxorubicin and cyclophosphamide (known in the cancer-world as AC). After that, I had 28 radiation sessions that wrapped up right before Christmas 2013. Then I had to get more Herceptin, the drug that saved my life, until June 2014.
What’s it like to get chemo?
It’s doesn’t hurt but it’s a lengthy process. I would have to go in an hour before my appointment to get bloodwork done. As long as my white cells were OK, the docs ordered the chemotherapy drugs from the MGH pharmacy. In the meantime, my wonderful chemo nurse would set up with pre-treatment drugs that ward off any negative reactions. When the chemo drugs are finished being made in the pharmacy, the infusion of the drugs takes about two hours. During chemo, people can do whatever they want–read, watch TV, listen to music, chill with friends and family. At times, MGH even has a contracted acupuncturist who will stick you. If you are ever in this situation and have the opportunity, do it. Acupuncture is da bomb.
Will you die from this? When will you die?
Originally, my doctor said there’s a 40 percent change the cancer could return within five years and if the breast cancer comes back, it especially likes to attack the liver, bones, and brain. But then an amazing thing happened. I had a pathological complete response (pCR) to my first round of chemo, which means that when they did my surgery and examined my removed breast and lymph node tissue, they couldn’t find ANY cancer cells. I remember the surgeon calling this the “Holy Grail” of treatment. Although my original oncologist wouldn’t give me modified stats, another doctor at Dana-Farber said to expect only a 10 percent chance of recurrence. And then when my beloved oncologist moved to her native Ireland (*tears*) and I was assigned to MGH’s head of breast oncology (cha-ching!), my new doc said I had LESS than a 10 percent chance of recurrence. How ’bout them apples?
How can I help my friend who is newly diagnosed?
Really, there are only three things you need to remember about the needs of cancer patients: money, childcare, and food. If there are no kids, then it should be money, money, and food.
What are some shitty/less-than awesome things to say to cancer patients?
“I don’t know how you do it.”
“You are SO strong.”
“You’re a warrior!”
“Oh, I don’t know why I’m complaining about my [dirtbag husband/hangnail/crazy child/whatevs] when you’re going through this.”
Let me give you a little secret. I won’t even charge you or make you read some lame book to get it.
When people have cancer, they remain PEOPLE who happen to have cancer. Although some may transcend their worldly body to become demi-godlike creatures with amazing perspectives previously unknown, this did not happen to me, nor did it happen to the majority of cancer survivors with whom I’ve talked. Nothing is more patronizing than hearing “I don’t know how you do it” or that someone else’s problems aren’t as important as yours. Because, well… I’d much rather have cancer than your dirtbag husband. And more important, all suffering is relative. If your hangnail is the worst pain you’ve ever felt, that’s JUST as valid as my pain getting sliced and diced and radiated until my skin blistered. Truth.
Also, cancer does not make someone a “warrior.” Just like when you have a baby and you realize, “Oh shit! It’s sink or swim time,” cancer throws you the same dilemma. Deal or don’t deal. Take the drugs and surgery or don’t. But wanting to live doesn’t make anyone a warrior. It makes them human.
What are some good/acceptable things to say people with cancer?
“Dude, that totally sucks.”
“What’s your treatment like?”
“How are you feeling?”
“Want some money?”
“I’ll take the kids [SPECIFIC DATE] so you can chill.”
Basically, feel free to ask any questions that don’t involve, “Soooooo, when are you going to die?” and you’ll be good. Make believe your friend has some common illness and ignore the popular cultural perception of cancer patients. Act accordingly.