I read a great quote recently on Twitter: "Reality is never as dark as the places your brain visits in anticipation." (Thanks, @madhulikasikka!)
One of my lowest points on my journey thus far had to be the anxiety I felt as my first chemotherapy treatment approached. I was short of breath, had a perpetual knot in my stomach, and was on the verge of tears pretty much all the time.
At first I didn't connect my physical reaction to the appointment looming on my calendar. I thought I might be having a reaction to the anesthesia from my recent cancer surgery, or that I was possibly experiencing some side effect of the meds I was taking. Then I realized: this was good old-fashioned panic I was feeling.
Once the unknown became the known and I knew what to expect in treatment, my anxiety level decreased dramatically. Beforehand though, I was more than a little wigged out.
I was starved for information about what to expect from chemo, and peppered my knowledgeable friends (i.e., friends who had gone through treatment) with questions as I thought of them.
Here are some of the tips and tidbits I learned along the way:
1. Connect with the cancer community as soon as possible. Reach out. Get on the social graph. There is a beautiful and enormous community out there comprised of the most generous, helpful souls you'll ever meet, all of whom have been touched by cancer in one way or another. There is nothing you'll go through that someone out there hasn't experienced. This will become your lifeline. And you'll make some amazing friends in the process. This will also become your way to give back as you get further along in your treatment.
2. Go shopping. You're going to need easy, comfy clothes to wear, but you're also going to want to feel good about yourself. A great friend of mine took me shopping for chemowear before I started treatment. Soft, flattering easy pieces that are interchangeable and low maintenance but are also cute and stylish. You're likely going to feel less than attractive with the hair loss, chemo bloat, steroid face, and any number of other side effects. Don't let frumpy clothes add to the mix. It's also good to get some cute hats and scarves as well as a wig if you think you'll wear one. You don't want to wait until your hair falls out to figure out how to cover your head. I ended up going commando up top, but it was nice to have funky hats in those early days before I got comfortable rocking the bald head in public. I also had my longtime friend and hairdresser cut and style a wig for me in advance. Although I never ended up wearing it, it was comforting to know it was there in those first weeks.
3. Prepare for skin changes. I had heard that chemo might dry out my skin and cause it to become flaky and itchy. I actually experienced the opposite effect. My skin has never felt softer, likely due in part to the fact that I am as hairless as a baby mouse. But I do stay moisturized and have continued to take extra good care of my skin during treatment. I've been told that I have a glow. It may very well be a toxic glow from all of the poison in my system, but I'll take what I can get.
4. Take charge when the hair starts coming out. You're likely going to lose your hair. You'll know it before it happens because your scalp will actually become tender and painful before the follicles "release". Rather than watch it thin and fall out and clog your shower drain, once it's clear that you're going to lose it, take control and, as my husband called it, "shave the f*cker." I also ended up having a make-up artist friend teach me and a group of friends how to apply false eyelashes. It was fun and also made something potentially upsetting into what will always be a good memory.
5. There will be weird changes in your body. Try to become curious about them rather than mournful. Know that they are almost entirely temporary. But be prepared. I had no idea I'd lose my nosehair or what this would mean until I started experiencing random outpourings of snotwater. There's nothing to hold it back! And with no eyelashes, not only do I look somewhat odd, I'm constantly getting dust and particles in my eyes, which plague my poor contact lenses. And you'd think you'd lose weight during chemo, what with all of the nausea. But it's actually more common to gain weight during treatment. There's bloating associated with the constant and frequent infusions of chemicals, as well as with the steroids given in connection with the chemo. And the drugs wreak havoc on your metabolism. Insult to injury, yes, but again ... temporary.
6. Line up a healthy meal plan. Say yes when people ask if there's something they can do. Get one of your organized friends to arrange for meal delivery in the early weeks, but specify that you need clean and healthy whole foods, nothing high in fat or sugar. Above all else, at least until you finish treatment, eat what appeals to you (rather than skipping meals). You need the nourishment. Helpful tip: peanut butter helps get rid of any chemical taste in your mouth. I keep organic peanut butter crackers with me at all times.
7. Organize help. Ask friends to bring you lunch during treatment, but first find out what pre-meds you'll be given. I'm given intravenous Benadryl during two of every three chemo sessions, which essentially knocks me unconscious for several hours. I found myself trying to stay awake to entertain the extraordinarily nice and generous friends who had taken the time to keep me company during treatment. Plan for this, and if you're not comfortable having people watch you sleep, simply have friends stop by during your waking hours. Then take advantage of the drugs and get some much needed rest. You might also arrange for rides to and from treatment ... you're likely not going to feel like driving yourself.
8. Put on a little lipstick. I always felt better when I wore makeup to treatment, or anywhere else post-treatment for that matter. It heads off a lot of the pitying "cancer face" looks. Someone recently told me that if he had not known my story, he would have thought I was just some rocker chick who decided to shave my head. Part of that is because I make it a point to hold my head high and not walk around shyly or apologetically in an attempt to hide what is happening to me. At least a third of us have or have had cancer. I think we should see more bald heads out there. We're more common than not. But the makeup serves as a shield of sorts, giving me the strength and confidence I need to power through in a public setting.
9. Get to know everyone on your care team, from the nurses to the lab techs to the dedicated folks in billing and scheduling. These are people who have chosen to go into the cancer field, and I've found them to be among the most kind and dedicated folks out there. Take the time to learn their names and hear their stories. This is not a quick journey ... you're going to be in this together for awhile.
10. Pack your chemo bag. At the onset of this process, a dear friend and relative gave me a bag inscribed with the words "Fuck Cancer", which I carry with me to all of my appointments. (It is always met with a smile, even from the most surprising of sources.) In it I carry books and magazines; my laptop and/or iPad; some ginger chews and ginger pills (for nausea); lip balm and lotion; comfy socks; thank you notes and a good pen; a phone charger; a soft blanket (those chemo rooms are generally pretty cold); a bottle of water; and some healthy snacks. I keep this bag stocked and take it with me to every treatment.
11. Pamper yourself. The chemo will make you feel run down, and possible cause you to retain fluid. White count booster shots will make you feel like you have the flu, with sore muscles and achy joints. (Regular Claritin the day of and the day after the shot helps tremendously.) Treat yourself to massages if your oncologist approves: lymphatic drainage massages to help move the fluid through your system; myofascial massage to help ease the pain in sore muscles. And just the power of the human touch can work wonders. Acupuncture is also very helpful for chemo side effects. You're going through enough. You deserve this. (PS. Spa gift certificates are great gifts to give someone going through treatment.)
I've said before that cancer has taught me a lot about letting go of the illusion of control. There's little I can control in this process, but knowledge is power. Learning what to expect as much as I can has helped me keep fear at bay.
And when it came down to it, chemo hasn't been so bad. In fact, it has actually been a comfort, a proactive step I can take in my journey to eliminate all evidence of disease from my body.
A small price to pay, really.
Image via Brooke Kelly Photography
Going to baseball games
Riding bike rides in the nice weather
Playing outside after work/school
Going for walks outside