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5 tips from my mastectomy experience

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erika51.jpgBy Erika Archer Lewis

It's difficult to condense the emotional and physical tolls that a mastectomy brings. It's life-changing, but so worth it.

After I discovered that I carried a mutation for the BRCA1 gene, increasing my risks for both breast cancer and ovarian cancer, I decided to undergo a prophylactic double mastectomy. Most everyone I talked to before the surgery told me to give myself six weeks to heal. At five weeks, I thought they were all crazy, but you do turn a corner.

The healing process varied day to day. It's truly miraculous how much healing your body does. Mine surprised me. I won't claim to be back to 100% after my mastectomy, and some things will never be the same. But I'm embracing my new normal.

Here are five tips I learned from my mastectomy experience.

1. Prepare for your mastectomy recovery
Pre-arranging school drop-off, scheduling house-cleaning help, and even little things, like ordering school Valentine's Day cards a month early gave me time to heal.

A week before surgery, I met with my daughters' teachers to explain what was going on. It was absolutely no surprise that both of their teachers were sympathetic and became an extended support system.

My incredibly thoughtful and kind friends prepared dinners for five entire weeks after my surgery. It was a huge relief not to have to worry about grocery shopping and cooking. The most beautiful part of this gift was that it enabled me to muster up enough energy to be able to sit down with my family at the dinner table.

2. Bring people you trust

Two of my best girlfriends dropped everything to travel with me for surgery. I had told them not to come, but they know me better than I know myself and came anyway. Knowing the two of them, along with my husband, would be by my bed made the entire situation less stressful.
I knew I had three all-star patient advocates.

More importantly, if something went horribly wrong, I could trust these three to make tough decisions. The sense of relief and gratitude I felt enabled me to focus on what I was about to undergo.

3. Be honest about the mastectomy side effects you're feeling
Before my mastectomy, I'd never undergone even a minor surgery or needed pain medications. But as I learned, pain management can be a complicated process. There are various phases your body goes through after a major surgery.

You may feel tingles or itchiness as your brain sends signals that are no longer received by the tissue that once occupied your chest. You have incisions that are healing externally, and your muscle movements and strength are compromised. You have exterior drains and drainage tubing sewn into you, and all the while, you are mentally attempting to digest what has just happened. It can be overwhelming.

When visiting your nurses and physicians, be honest in describing your pain level. Everyone is different and heals differently. Your doctors and nurses can't help if you don't communicate your experience. It may help to write down how you're feeling each day, so you can report back to your doctors.

You don't get a trophy for tolerating severe pain. Martyrdom and suffering will not help you achieve a successful result, so you need to focus on managing your pain and ensure your support team understands and can help you implement a plan around it. 

I can't tell you how important (and amazing) it is to have your husband or mom or whoever is on your team appear with a glass of water and the medicine you need to keep ahead of the pain curve. 

4. Take a break
About three weeks after my mastectomy, I woke up feeling terrific. No one was around, and I noticed the dishwasher needed emptying. I proceeded without much thought. Although I couldn't put dishes away on the higher shelves,  I was able to empty 95% of the dishes, and I felt a little sense of victory.

Two hours later, I attempted to take my first shower in warm water. Two minutes in, I had to yell for my husband to rescue me as my chest and back muscles spasmed. I spent the rest of the day in bed. Take it easy on yourself. Slow and steady wins the race.

I often felt guilty as my family took care of me, but they reminded me that pitching in made them feel less helpless. They reminded me to keep perspective: although these were temporary sacrifices on their behalf, the greatest sacrifice was undergoing the mastectomy to reduce my chances of cancer and reduce worry for us all in the long term.

5. Know that you will feel better
The road to recovery was a long one for me. But just when I was wondering if I'd ever feel fully human again, my body surprised me.

No matter how heavy your body and your heart may feel during the mastectomy process, know that one day you will celebrate your success.

Read more posts by Erika Archer Lewis.

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