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KristineKeeney.jpgBy Kristine Keeney

When the doctors first told me about the details of my surgery for my sarcoma of the tongue, I couldn't have imagined how much the surgical incisions would cause the injured tissues to swell or that the graft site on my left arm would end up looking like something out of a bad Halloween horror story.

In order to remove the sarcoma, doctors had to perform a full neck dissection and a resection of the floor of my mouth and part of my tongue. Then they rebuilt these parts with skin grafts from my left thigh and my arm.

Life after sarcoma surgery

The first time I saw my arm unwrapped, I was appalled. There was this huge swollen slab of me attached to my forearm, and it looked like it was either going to fall off or explode. I was actually afraid of my arm. I didn't want to look at it or have anything to do with it. It bothered me, was the embodiment of nightmares, and made me feel like a freak.

erika924.jpgBy Erika Archer Lewis

In August 2013, I tested positive for a BRCA genetic mutation, which increases the chances that I would develop breast cancer or ovarian cancer. Add that to a family history of aggressive breast cancer, and you have a recipe for constant worry and sleepless nights, anxiety and a feeling of helplessness.

In my conversations with other women like me, there was always a general sense of, "Whew, I made it another year" after each negative mammogram. That's psychologically draining and not a healthy way to live one's life. I wanted out of that stressful cycle, and fast, but I wasn't sure what my options were.

When I received my genetic testing results, my doctor looked me in the eyes and said: "Erika, you do realize, it's not if you get breast cancer, it's when?"

Suitcase.jpgWhat do you pack when you head to MD Anderson for cancer treatment? If it's your first trip, you might be a little overwhelmed.

So we asked the experts --the patients, caregivers and survivors that make up MD Anderson's Facebook community. Here's what they recommend packing for a trip to MD Anderson:

Something to keep you busy while you're here. Whether it's your laptop or tablet, a book, games or letters of encouragement, it can be helpful to have something to pass the time and keep your mind occupied while you wait.

A notebook and pen or a digital voice recorder. Your first visit can be overwhelming, and it may be difficult to take in all the information you receive. Not only is it a good idea to bring a list of questions for your doctor, but many of our patients also find it helpful to take notes or record their appointments so they can remember the information later.

carissa922.jpgBy Carissa Lucas

As a 25-year-old athlete with an almost perfect health history, my lymphoma diagnosis was a crushing blow. It happened so quickly that I almost didn't have time to process what was happening to me, until I found myself sitting in an infusion room a week later receiving my first round of chemotherapy.

I won't deny it: chemotherapy is tough. However I found some strategies that helped me cope.

Though everyone responds to treatment differently, I hope at least one of these strategies makes chemo a little easier for you.

steveandjennifer.jpgBy Jennifer Martin

When my husband, Steve, was diagnosed with stage IV melanoma, he was given six to nine months to live. That was almost three years ago.

After Steve underwent several rounds of biochemotherapy, a major surgery, Zelboraf and Yervoy, doctors performed scans and found no evidence of disease (NED). Now our family is getting ready for another round of scans to see if Steve is still NED.

Regardless of the outcome, we've learned a few things in the past year.

iStock_000011745159XLarge.jpgWant to help a friend or loved one dealing with cancer? It can be hard to know exactly what you can or should do.
 
That's why we asked the cancer patients, survivors and caregivers in our Facebook community to tell us the most helpful thing you can do for a friend or loved one dealing with cancer. Here's their advice.

1. Visit. Cancer patients and caregivers are still people, and they want to see you, talk to you and laugh with you.

2. Listen. Ask questions to show you care, but let your friend or loved one lead the conversation.

3. Pray.

4. Find a way to help and just do it. Don't ask if there's anything you can do. Chances are your friend will just say thank you and won't ask you to help. Many of our Facebook fans suggested just doing something for friends with cancer instead of asking what they need.

Harley731.jpgBy Harley Hudson

One day at a time
It's not easy to ask
One day at a time
It's quite a task

I want to run ahead
To know what lies
Just around the corner
A week, a month, a year from now
Is what I want to know

One day at a time
It's all I need to know
One day at a time
I'll take it real slow


Early in my chronic lymphocyctic leukemia (CLL) journey, my wife Melanie and I had learned to take things one day at a time. It has not been an easy lesson, and I'm not sure I have mastered it yet. But I'm working on it.

This lesson has been especially important following my stem cell transplant. If I had expected to feel normal after a week or two, I would have been sorely disappointed.

Recovery is a slow process. Some 55 days after I underwent my stem cell transplant, I am still far from feeling like myself.  I have friends who tell me it can take a year or more to regain strength and stamina. Of course, I also have a friend who is running marathons. Recovery is as personal as a fingerprint.

Here are a few things that have helped me recover following my stem cell transplant:

Take life one day at a time. Enjoy the victories each day brings. Look for them. They will start out small and may be hard to see if we expect too much.

amanda915.jpgBy Amanda Woodward

When I was undergoing melanoma treatment, I encountered a lot of people who struggled to find the right words to say to me.

I get it: it's awkward. But the things you say can have a big impact on cancer patients. Some things may do more harm than good. This includes things like "My cousin's friend's nephew's aunt had that same kind of cancer. She died." Ditto for "Have your tried eating kale? I heard that gets rid of cancer."

To help make the world a kinder place for cancer patients, I got together with some friends and made a list of what to say to someone with cancer.

Here's our list:  

"This really sucks!"
Preach! Cancer sucks. Chemo sucks. Radiation sucks. Surgery sucks. Being bald sucks. Chances are acknowledging this will get you a smirk from most cancer patients. Sometimes just showing a little empathy can be is a huge motivator.

"How can I help?"
But you can't stop there. Most cancer patients will tell you everything's fine, even though they could really use your help with something small. So just help. Try something. Show up at 9 to drive us to our 10 a.m. appointment. Have we mentioned that we don't feel like cooking? Pop over around dinner time with some grub! Even if your idea is a total fail, try. We love and recognize the supportive gestures.

Brittanyhurst912.jpgBy Brittany Hurst

After my ovarian cancer diagnosis, I knew some type of chemotherapy would probably be involved. But losing my hair didn't cross my mind until after I received a handout about chemo at my first doctor's appointment.
 
Hair loss was listed as a side effect of chemo. That's when it started to sink in. This was happening. I was going to lose my hair.

I won't lie. Losing your hair sucks. But after a couple weeks, I realized that my hair was going to grow back, and I had more important things to worry about. I was fighting for my life.

The reality of hair loss during ovarian cancer treatment
I hate to say this, but my hair was my "thing." I had been blonde my whole life and had been growing my hair out forever. I loved fixing it every day. (Well, almost every day.)  Losing my pretty, long blonde hair made me sad.

BethWilliams911.jpgHoustonian Beth Williams didn't come to MD Anderson when she was diagnosed with thyroid cancer in her mid-30s. But when she received a colon cancer diagnosis nearly 20 years later, she couldn't imagine going anywhere else. "I felt like if I was going to survive, I needed to be at MD Anderson," Beth says.

The 76-year-old CEO of an international language and logistics company now jokingly calls herself an MD Anderson "frequent flier." In the past two decades, she's been treated here for four different types of cancer. That includes colon cancer, breast cancer and -- just this past year -- kidney cancer and skin cancer. Her multiple cancer diagnoses don't appear to be based on genetics, just luck.

Still, Beth doesn't consider herself unlucky, and she doesn't let cancer run her life. Below, she shares her advice for thriving in the face of cancer.

Don't wait to go to MD Anderson.
Beth encourages newly diagnosed cancer patients to go straight to MD Anderson. "The care you get is amazing," she says. "I had so much confidence in everybody at MD Anderson, and no one ever has let me down or disappointed me."

anna jackson 2.5.14.jpgBy Anna Masten Jackson

Finding out you have cancer brings so many questions to mind. Finding out you have a very rare cancer, like thymoma, brings even more -- and often those questions have no answers.

Just as a cancer patient has many questions, so do those who care about us. Since my thymoma diagnosis, I've learned that some questions are easy to answer, while others cause you to face possibilities that perhaps hadn't even crossed your mind.

Here are some of the questions I'm often asked:

susanwoods98.jpgBy Susan Dixon Woods

In June 2009, I noticed a tinge of blood in my urine, but I quickly dismissed it because I had bigger fish to fry at the time. My husband's business had suffered financial losses, and we had just sent our daughter to a long-term treatment program across the country. I never thought it could be a bladder cancer symptom.

In August, I finally made an appointment with a local urologist, thinking I had a mild urinary tract infection (UTI). I went alone with the intentions of returning to work after the appointment. The urine specimen they collected showed traces of blood, but no bacteria.

A cystoscopy was performed and revealed a tumor at the dome of the bladder. I calmly asked, "Could it be cancer?" The doctor responded, "It likely is."

My bladder cancer diagnosis and treatment
A few weeks later, I underwent a transurethral resection (TUR), a surgery in which the tumor is scraped from the bladder, then a partial cystectomy. Both confirmed that I had urachal adenocarcinoma, a rare type of bladder cancer. It represents less than 0.5 to 2% of all bladder cancers, and research showed survival at less than a year.

All I could think about was that I could not die because my family needed me. Yes, you could say I was a control freak and thought the world would not go on without me.

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