What happens after the initial shock of a metastatic breast cancer diagnosis? As a person who’s been on chemo for nearly eight years and who’s reached the longevity most hope for, I feel a lot of joy in still being here.
But life is also not easy. My treatment over the years has included a surgery to remove half of my cancerous liver, SBRT radiation when it grew back, and a variety of chemotherapy drugs through it all.
All of these treatments — plus the knowledge that one day they’re likely to stop working — not only takes a toll on your physical health but your mental health as well. I’ve had to come up with some coping mechanisms to make my life easier.
I always wake up abruptly, perhaps a remnant from my years of working. It takes a moment for the pain to pierce my consciousness. I first look out the window to see the weather, then check my phone for the time and any messages. I slowly get up and make my way to the dining room.
I need a lot of sleep these days, a good 12 hours at night, with some naps during the day. Chemotherapy causes intense fatigue, so I’ve arranged my life to avoid morning activities whenever possible. No more Mother’s Day brunches or early Christmas mornings, nor breakfasts with friends. I let my body sleep until it wakes up — usually about 10 a.m., but sometimes as late as 11 a.m. I wish I could wake earlier, but I find that when I do, I’m so fatigued in the afternoon that I’ll fall asleep no matter where I am.
My retired husband — who’s already been up for several hours — brings me a cup of coffee and a small breakfast, typically a muffin or something light. I have difficulty eating anything, but have recently gotten to 100 pounds, a goal weight.
I’m a newspaper reader from way back, so I flip through the paper reading the local news as I drink my coffee. I always read the obituaries, scanning for cancer patients, those who’ve had a “long and courageous” battle. I’m curious to see how long they did live.
Mostly, I look forward to doing the cryptoquote puzzle every day. Puzzles are supposed to be good for brain health. Eight years of chemotherapy has made my brain fuzzy, which cancer patients call “chemo brain.” It’s been four weeks since my last chemo, and so I find the puzzle easier today than I will tomorrow. Yes, today is chemo day. Tomorrow, I’ll struggle differentiating a Z from a V.
Although I know it’s chemo day, I check my calendar for the time. I’m at the point where I cannot keep a schedule in mind properly. Another adjustment I’ve made is to schedule all my oncology appointments on Wednesdays. I know Wednesday is a doctor day, so I won’t schedule anything else on that day. Because I get confused easily, I keep a paper calendar both in my purse and one on the kitchen counter, open to the current month, so I can easily see what’s coming up.
Today, I double-check the time of my appointment and notice that I’ll also be seeing my doctor for scan results. My son is also coming over for a quick visit on his break.
At this point in my treatment, my rule is to only plan to do one thing a day. I might go out to lunch or I might go to a movie, but not lunch and a movie. My energy is limited and I’ve learned the hard way that my limits are real.
I take my first pain medicine of the day. I take a long-acting one twice a day and a short-acting one four times a day. The pain is a chemotherapy-induced neuropathy. Plus, my oncologist believes I’m having a neurotoxic reaction to the chemo I’m on.
There’s nothing we can do about it. This chemo is keeping me alive. We’ve already moved the treatment from every three weeks to once a month to slow the progression of the nerve damage. I experience deep and constant bone pain. I also have sharp abdominal pain, likely scar tissue from the surgeries or radiation, but possibly from the chemo as well.
It’s been so many years since I’ve been off treatment that I no longer know what causes what or remember what life feels like without pain and fatigue. Needless to say, pain medicine is part of my life. While it doesn’t control the pain completely, it does help me function.
The pain meds have kicked in so I now take a shower and get ready for chemo. Although I’m a perfume lover and collector, I forgo wearing it to so nobody has a reaction. The infusion center is a small room and we’re all close together; it’s important to be thoughtful.
The goal in dressing today is comfort. I’ll be sitting for a long time and the temperature in the infusion center is cold. I also have a port in my arm that needs to be accessed, so I wear long-sleeved items that are loose and easy to pull up. Knit ponchos are good as they allow the nurses to hook me up to the tubing and I can still stay warm. Nothing tight around the waist — I’ll soon be full of liquid. I also make sure I have headphones and an extra charger for my phone.
I’ll likely not have the energy to do very much for the next two weeks so I start a load of laundry. My husband has taken over most of the chores, but I still do laundry myself.
My son stops by to change the filter on our air-conditioning system, which warms my heart. Seeing him reminds me why I’m doing all of this. Living for as many years as I have has brought me many joys — I’ve seen weddings and grandchildren being born. My youngest son will graduate from college next year.
But in the day-to-day pain and discomfort of life, I wonder whether it’s worth it to go through all this treatment, to stay on chemo for so many years. I’ve often considered stopping. Yet when I see one of my children, I know that it’s worth the struggle.
My son has gone back to work, so I check email and my Facebook page. I write to the women who write me, many newly diagnosed and panicked. I remember those early days of a metastatic diagnosis, believing I’d be dead within two years. I try to encourage them and give them hope.
Time to leave for chemo. It’s a 30-minute drive and I’ve always gone by myself. It’s a point of pride for me.
I sign in and say hello to the receptionist. I ask if her child has gotten into a college yet. After going every few weeks since 2009, I know everybody who works there. I know their names and whether they have children. I’ve seen promotions, arguments, exhaustion, and celebration, all witnessed as I got my chemo.
My name is called, my weight is taken, and I settle into an oncology chair. Today’s nurse does the usual: she accesses my port, gives me my antinausea meds, and starts my Kadcyla drip. The whole thing will take 2 to 3 hours.
I read a book on my phone during chemo. In the past, I’ve chatted with other patients and made friends, but after eight years, having seen so many do their chemo and leave, I tend to keep more to myself. This chemo experience is a frightening novelty to many there. For me it’s now a way of life.
At some point I’m called back to speak to my doctor. I drag the chemo pole and wait in the exam room. Although I’m going to hear whether my recent PET scan shows cancer or not, I’ve not been nervous until this moment. When he opens the door, my heart skips a beat. But, as I expected, he tells me that the chemo is still working. Another reprieve. I ask him how long I can expect this to continue, and he says something surprising — he has never had a patient on this chemo as long as I’ve been on it without them experiencing a relapse. I’m the canary in the coal mine, he says.
I’m happy for the good news but also surprisingly depressed. My doctor is sympathetic and understands. He says that, at this point, I’m not much better off than somebody who’s fighting active cancer. After all, I’m undergoing the same thing endlessly, just waiting for the shoe to drop. His understanding comforts me and reminds me that today that shoe hasn’t dropped. I continue to be lucky.
Back in the infusion room, the nurses are happy for my news, too. I’m unhooked and leave through the back door. How to describe what it feels like to have just had chemo: I’m a little wobbly and I feel full of liquid. My hands and feet are burning from the chemo and I constantly scratch them, as if that would help. I find my car in the now empty parking lot and start my drive home. The sun seems brighter and I’m eager to get home.
After I give my husband the good news, I immediately go to bed, forgetting the laundry. The pre-med drugs keep me from feeling nauseated and I don’t yet have the headache that will surely come. I’m very fatigued, having missed my afternoon nap. I crawl into the covers and fall asleep.
My husband has fixed dinner, so I get up to eat a bit. It’s sometimes hard for me to eat after chemo because I tend to feel a bit off. My husband knows to keep it simple: no heavy meats or a lot of spices. Because I miss lunch on chemo day, I do try to eat a full meal. Afterwards, we watch TV together and I explain more about what the doctor said and what’s going on with me.
Because of my chemo drugs, I cannot go to a dentist to have any serious care. I’m very careful about my mouth care. First, I use a waterpik. I brush my teeth with a special and expensive tartar-removing toothpaste. I floss. Then I use an electric toothbrush with sensitive toothpaste mixed with whitener. Finally, I rinse with a mouthwash. I also have a cream you rub on your gums to prevent gingivitis. The whole thing takes at least ten minutes.
I also take care of my skin to prevent wrinkles, which my husband finds hilarious. I use retinoids, special serums, and creams. Just in case!
My husband is already snoring. I slide into bed and check my online world one more time. Then I fall into a deep sleep. I’ll sleep for 12 hours.
Tomorrow, the chemo may affect me and make me nauseated and headachy, or I may escape it. I never know. But I do know that a good night’s sleep is the best medicine.
Ann Silberman is living with stage 4 breast cancer and is the author of Breast Cancer? But Doctor … I Hate Pink!, which was named one of our best metastatic breast cancer blogs. Connect with her on Facebook or Tweet her @ButDocIHatePink.