I’m coming up on five years since I was diagnosed with cancer. I don’t want to jinx this thing, but doctors tell me that if you hit five you reach an important milestone.
I had uterine serous carcinoma, which is a fancy term for an uncommon form of endometrial cancer. In my case they removed every participating organ below the belly button and up the tunnel of love, then doused me in chemo.
In these (nearly) five years I’ve received some great advise about how to deal with the disease and find joy again…even in the midst of treatment. I hope you don’t mind if I share some well-meaning insights from some wise survivors. If these observations help one person, that will make me happy. So, here are some things I learned from others along the way.
Remember that 95% of your body is working great. There is just 5% that needs tweaking. The main thing to remember is you’re not a sick person. Stay active and social and have faith in your doctors and team. Only surround yourself with positive people and events.
Make the decision to accept the treatment and welcome it in. You are not battling or fighting this disease…You’ve accepted that chemo and radiation are your allies. They are on your side. I know that might be hard to wrap your head around, but you need powerful tools to send this stuff packing.
Take a day at a time. Don’t get down on yourself or depressed. When I was diagnosed, my emotions were all over the place. Still, the one thing that remained constant was my gratitude for the overwhelming support of friends and family. You will find yourself forever changed by the outpouring of love that you receive from those who are sending prayers and good thoughts your way.
Any research you find online is probably out of date, except for the American Cancer Society. The only time I ever got really down was when I googled my type of cancer and went into a chat room.
If you need something from your doctors…maybe think about saying, “Thanks so much for helping me. I’m sort of feeling anxious about _____ (whatever it is.)” I’ve seen very busy doctors drop what they are doing and come to the rescue.
Keep reminding yourself that this is going to work out…and BELIEVE IT! Make this your healing mantra.
Give some thought to getting a port before you begin treatment. My dear friend said that she would give up her husband before her port…and she had a great husband! A port means the nurses aren’t touching you, but only accessing the area. I got a prescription for Emla (or Lydecane) and put it on religiously about an hour before chemo. I truly think it helped to numb the site.
Before I would walk into chemo, I’d say, “Only those who are here for my highest personal good may remain in my space.” This is just a suggestion. It may sound too spiritual for you, so only accept this statement if it rings true for you.
Treatment can take a good portion of the day so come prepared. Bring your favorite soft blanket, a warm pair of socks, wear your lucky earrings, make a thermos of your favorite tea…bring a book, or ear buds to listen to a good podcast…whatever makes you feel like you are being kind to yourself. Sometimes I would visualize beautiful places during treatment…walking on a beach in Maui…a summer day on Camano Island…skiing down a particular slope with light powder and blue skies. Often I’d dream about an escape, pretending that my husband and I had bought a camper and started driving all around the country playing music. I saw us running out of gas and busking for tips until we could fill our tank and move on. (Not so crazy…we are actually doing this!)
Find a sense of humor. Sometimes it’s not easy, but it will truly help. Don’t give power to cancer. Do whatever you can do to put a pin in the disease and deflate its energy.
If you are worried about losing your hair, take a preemptive strike and cut it real short. I lost most of my hair about three weeks after my first treatment. There were a few stubborn spots that hung on for dear life (which is how I earned the nickname “Patches”) but then we drove around in my husband’s old convertible until the rest found flight on the 405 South.
Each person has to decide for themselves if they want to get a wig or go au natural. I made the choice to go without, but if I had to do it all over again, (and could afford it) I would buy a wig, before going bald. I say this because all I wanted was to feel “normal” again after treatment, and my hair took its sweet time growing back.
One great bit of advice my good pal Meg told me…make friends with your medical team. The doctors and nurses…learn their names…and anyone else who you will be contacting in the coming months. Figure out who sets appointments and who you call for general health questions/concerns. Also, remember that you might be seeing the same patients at treatment so if you feel like introducing yourself, that would be nice. Not everyone may be in the mood to talk or high five after pounding a chemo bag, but those who are, will be appreciative.
I’d be remiss if I didn’t mention diet and exercise. I tried to stay away from coffee, sugar, alcohol, processed food, red meat, sushi, and my downfalll…Cheez-its and Snickers. Initially it was not hard to stick with healthier choices, but it wasn’t always fun. I just knew that it was good for me and I would be doing everything I could to rid my body of the disease.
Get yourself a notebook to house important pathology reports, procedures, recapped conversations with your doctors and medical bills. The paperwork can become overwhelming so I ended up with two folders…one for medical bills and the other for doctor related material. Supposedly there is specific software that would organize it all, but I still harbor the strong tactile urge to paperclip, hole punch, staple and categorize. It made me feel in charge, which is truly laughable.
This journey is humbling, but the experience will teach you a lot. I remember one day in particular when we went to visit a radiologist who would be working on a plan for post chemotherapy. She reviewed my records and then told me that she did not recommend radiation because she wanted it in her arsenal for later…if I had a reoccurrence. I’d been preparing myself for the next stage for weeks only to find out that I had completed treatment. The news was bittersweet. How do you live fully with the knowledge that it could rise again and rear its ugly head? What do you do to live cancer-free and remain AWOL for a second tour of duty in the chemo trenches? But as that smart doctor reminded me…There are no guarantees in life. Just time. Time is the only thing we will ever have.
Some deep soul once said…”You may not be able to control every situation and its outcome, but you can control your attitude and how you deal with it.” In other words…Flip into the positive. Soon the cancer will be “over there.” Remember that this won’t last forever. Three months from now it will be different…and five years from now you will have your own new chapter of life!
If you ever want to talk about anything…please leave a comment or email me at aboreson4@hotmail.com. I’d gladly lend an ear or share what little I know with you. We may be in this club that no one wants to join, but we’re in good company!
Warmly,
Annie
This post is dedicated to my dear friend Meg Healey Magee.
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