Archive | August, 2012

Wife, mom of three shares her advice for cancer patients

31 Aug

Liz Beal, an administrative associate in the MU School of Health Professions was diagnosed with breast cancer in her late twenties. Here, she shares her story with us:

Liz Beal with her family. 

“I was diagnosed at the age of 28 with both Inflammatory Breast Cancer (IBC) and Invasive Ductal Carcinoma (right breast). I was Her2 positive, ER+ and BRCA1. I discovered a lump when I was a few months pregnant. At that time it was about the size of a ping pong ball. It came out of nowhere. Looking back I had many signs of IBC even before that but I explained most of them away because they were typical of pregnancy. Some examples include terribly itchy breasts, tenderness and pain, the same things I experienced in my first two pregnancies but magnified this time around.

Even after I found the lump, my OB said it was probably a cyst or something and that it was typical in pregnancy.  She told me we would keep an eye on it for now and that most resolve themselves. It stayed mostly the same until I was around 33 weeks along. The pain became nearly intolerable and it had started to grow. Everyone is always told cancer doesn’t hurt so the pain was kind of a relief to me. I was planning to bring it up again at my appointment the next week but I never got the chance.

While my husband and kids were out of state visiting family for a wedding I went into labor. The local hospital couldn’t handle preemies and they couldn’t stop my labor. They were finally able to stall it long enough to fly me to yet another state where I finally had my baby six weeks early. She was placed in the NICU because of her age but she was born with no significant health issues.

Somehow over that last couple of weeks before she was born the lump got huge. It was baseball-sized when she came and over the next day or two it grew even more.  This was most likely because the hormones and all the pumping I was doing to store milk for our new preemie. The on-call OB looked at it and told me she thought I had IBC but the surgeon after doing an ultrasound said it was a benign tumor. I was relieved to hear it wasn’t cancer but my husband and I knew something wasn’t right so we spent the next two weeks researching breast cancer, including IBC. Our daughter was in the NICU and we were two states away from home so we had a lot of time on our hands to research.

By the time she was released at the age of 2 weeks we had set up an appointment back home in Missouri with a surgeon and we were pretty sure this was IBC. She did a biopsy that day that but it took a week for the results because apparently lactating breasts are difficult to do a biopsy on and they wanted to be sure. Exactly one week after the biopsy it came back positive and I was told I had cancer. The following day I saw an oncologist, a couple days later my port was put in on mine and my husband’s 10-year anniversary. That same week I started chemo.

IBC has to be treated differently than most types of cancer. I had chemo first. My cocktail was TCH every three weeks for six rounds followed by Herceptin alone every three weeks for a year. Less than a month after I finished chemo I had a bilateral mastectomy without reconstruction.  Then I had six weeks of daily radiation. That was the worst part for me. I had no skin left by the time radiation was done but I worked through all of my treatments and just having to wear clothing was torcher. I also chose to have a hysterectomy because I was BRCA1 and didn’t see myself having any more children once I was finished with all these treatments. I’m now on Tamoxifen and will be on that for a few more years.

The decision on what treatments to have really didn’t take much. We had spent plenty of time researching before my diagnoses and my surgeon,  oncologist and the radiation oncologist all presented us with their plan of action which matched everything that we had read. It was a no-brainer for us.

Faith was probably the most important part of my healing.

I knew I had a hard road ahead of me but I also knew that no matter what the outcome of my treatment was that me and my family would be just fine. We prayed daily that we would be able to draw close to God and that if I was not going to survive that He would give us the tools we needed to accept that.

I also knew that I would have bad days and it may be easy to find excuses not to pick up my Bible so I kept teaching our ladies Bible study at my church as way to make sure I didn’t let my time with God get put on the back-burner. Our church was incredibly supportive and encouraged us the entire way. When I was going through treatments my worst days were also my best days because it was on those days that I felt the sickest and most down that I relied the most on God and my faith grew because of it. I always tell people that are facing cancer to find something to believe in that is bigger than yourself.

For me this meant deepening my relationship with Christ and for someone else it may mean something different but seek something to believe in. I bought one of those pink breast cancer Bibles that had scriptures highlighted. It was wonderful to have those so easy to find so I didn’t need to go searching. Many of them were positive but not all of them were and that was really important for my healing process. To know that even our greatest Bible heroes had some really bad days.

My four favorite scriptures while going through treatment and still today are Psalm 30:5, James 1:2-4, Romans 12:12 and Matthew 6:34. They hang above my desk at work as a daily reminder.

My first bit of advice is to do your research. I was lucky enough to have outstanding doctors but it’s important to research what you have and your treatment options on your own. Find someone who has been through it. It’s overwhelming in the beginning and reaching out to women with the same diagnosis you have can be a big help. I didn’t know anyone with breast cancer at the time I was diagnosed so I turned to message boards on all the breast cancer sites. There are tons of online groups you can get involved with. I belong to several message boards and Facebook groups and still today they are a huge help when I suddenly worry about reoccurrence or have a weird side effect from treatments. They are always there with answers and encouragement.

Next, surround yourself with positive people. It makes all the difference in the world. If people bring you down during treatments avoid them. I know that sounds tacky but really if people can’t be part of the team that helps you keep positive then they shouldn’t be part of your team. The thing that exhausted me and my husband the most was trying to keep everyone around us positive. I finally either told them to get over it, stop moping and get positive or we just avoided spending much time with them. It’s also important to look for ways to keep yourself positive. You can’t always rely on people to help keep you positive so take matters into your own hands. I painted my living room bright yellow while we waited on the biopsy to come back because I knew that there was a good chance I would be spending a lot of time in that room and I wouldn’t be able to sit in a room that bright without smiling. We found small things to laugh at and fun ways to celebrate milestones.

Along those lines…if you don’t have a sense of humor you should get one. It makes everything so much easier if you can just laugh at it. Staying positive of course will help you through treatments and that was part of my reason to stay positive. The other reason was because I wanted to make sure that if I wasn’t going to survive that I at least didn’t waste what little time I had left being miserable but instead enjoying every second I had left. Finally (and I also give this piece of advice to all women who are pregnant) emotions can be a bit much to handle sometimes. We all need a release so watch one tear-jerker a week, as well as anytime you start to feel overwhelmed. Just break out a chickflick and have a good cry. You will feel so much better after.

Being young and facing cancer is hard. At the time of my diagnosis I had three children ages 3 and under.

One of the best pieces of advice is that if you think something isn’t right, seek answers. We know our bodies better than anyone.

Many young women end up not getting an early diagnosis because we are told we are too young for cancer but obviously that isn’t true. Many women with IBC are misdiagnosed with mastitis and they go untreated for even longer than I did. Sometimes you have to be your own advocate. If something isn’t right, keep going back until you get an answer. Also make sure that you are making decisions for yourself and your family and that you are not pressured into things, especially ones that don’t directly affect the outcome of your treatment. There were a lot of people who tried to talk me into reconstruction. My husband and I made the joint decision not to do reconstruction but there seemed to be a lot of people who had trouble accepting that. I also tend to not wear prosthetics. It’s what is right for me and my family and I stand by that decision today. It’s a very personal decision and each person has to do what is right for them. We had the same issue with the hair thing. A lot of people tried to pressure me into wearing a wig. I felt that for me being bald was part of accepting who I was and where I was in life. I also want my girls to know and understand that it’s not our hair or our breasts that make us beautiful as women.

The most important piece of advice is for moms who are diagnosed with breast cancer: Don’t let those precious moments with your children and your husband pass you by. With that said, make sure you rest when you need to so that you can make those moments count. Even if all you can manage to do is lay on the couch and watch cartoons with your kids and eat jello, do it and enjoy it.  You should also be honest with your kids no matter how young they are. Tell them what’s going on. Help find ways for them to be part of it. I let my kids cut my hair after my first round of chemo and they had a blast. We also took them shopping and let them help pick out hats and bandanas for me and even let them pick some for themselves. This meant that I had a lot of cartoon character and brightly colored bandanas but it also brought smiles to a lot of people’s faces, including my kids’.

I was lucky and had an amazing husband who took great care of me; I couldn’t have done it without him. If you don’t have someone who can manage your treatments, your house, your kids and everything else, find someone fast because you shouldn’t attempt this alone. My husband and I were always close and made a great team before but during and after cancer we grew so much closer. It really ended up a blessing in our lives.”

Overweight = Higher risk of getting breast cancer again

29 Aug

According to new research from the journal CANCER, overweight and obese women have a higher risk of getting breast cancer more than once and dying from it even if they’d gone through chemotherapy and hormonal therapy.

“We found that obesity at diagnosis of breast cancer is associated with about a 30 percent higher risk of recurrence and a nearly 50 percent higher risk of death despite optimal treatment,” said lead author Dr. Sparano in a statement on eurekalert.org. “Treatment strategies aimed at interfering with hormonal changes and inflammation caused by obesity may help reduce the risk of recurrence.”

Read the full Time article here.

5 Questions for the Dietitian: About celiac disease

27 Aug

Lindsey Koelling, RD, LD.

Lindsey Koelling, RD, LD, is a dietitian at Hy-Vee in Jefferson City. Here, she answers some questions about celiac disease.

Q: Celiac disease is an immune disorder in which some people’s bodies react poorly to foods with gluten. How does the disease affect people’s bodies.

A: For someone with celiac disease, the protein found in foods containing gluten causes a reaction in the body which can lead to malabsorption of essential nutrients.  The protein found in gluten-containing products inflames the intestines and causes the villi, which are finger-like projections that absorb food, to lie down.  The only way to repair the villi is to completely avoid all foods that contain gluten.  This allows the villi to heal and stand back up.

Q: What is gluten and what foods is it in?

A: Gluten is protein found in wheat, barley and rye, and products made from these grains.

Q: Who is most likely to suffer from celiac disease? How do people who have celiac disease find out they have it?

A: According to the July 2012 issue of the American Journal of Gastroenterology, celiac disease is most prevalent in non-Hispanic whites.The most accurate way to determine if someone has celiac disease is to have an intestinal biopsy done.  This is really the gold standard for diagnosis.  This is done after a positive antibody test has been completed.

Q: What can people do to prevent or reduce the symptoms, which include bloating and gas, weakness, feeling tired, weight loss and irregular bowel movements?

A: The only way to completely eliminate these symptoms is to eliminate all sources of gluten.  This means eliminating the foods containing gluten as well as eliminating sources of cross contamination that can cause gluten-free foods to be contaminated with gluten.

Q: How can a dietitian help people with celiac disease?

A: Dietitians can be a great resource for individuals with celiac disease, especially those who are newly diagnosed.  There are a lot of grains that someone with celiac can still consume, as well as lots of foods that are naturally gluten-free.  Many times, newly diagnosed individuals feel that they can no longer eat many of their favorite foods.  In most cases they can still have these favorite foods; the foods just need to be prepared a different way.  Also, it is good to talk with a dietitian to learn about vitamins and minerals that those with celiac disease could be lacking.

 

You can reach Lindsey at 573-893-2505 or lkoelling@hy-vee.com.

Information provided by Lindsey and WebMD: http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-topic-overview.

 

 

Heart attacks in women: Know the symptoms

24 Aug

Heart disease is the No. 1 killer of Americans. It kills 10 times more women than breast cancer each year, according to the American Heart Association.

Yet many of the 400,000 women victims who experience the symptoms do not recognize them.

Actress Rosie O’Donnell, for example, said she noticed flu-like symptoms and an ache in her chest and arms, but didn’t seek treatment until the day after, when her doctor said she’d suffered a “widow maker,” a 99 percent blockage of the left artery.

The symptoms women experience are different than men’s:

  • a heaviness or tightening in the chest that may feel like extra pressure but is not always painful
  • nausea, a cold sweat, paleness or light-headedness
  • back or jaw pain
  • stomach pain
  • flu-like symptoms
  • unusual fatigue
  • shortness of breath

Sometimes even women who notice they’re experience symptoms decide to wait it out and see if the pain goes away or that they’re too busy or not in enough discomfort to go to the emergency room. Watch a short video called “You’ve Got the Heart Truth” by the National Heart Lung and Blood Institute.

Don’t wait! Take an aspirin and call 9-1-1 or get to a medical center immediately. Delaying treatment could cause even more damage to your heart or be fatal.

Learn more about how to be heart-healthy at any age with the American Heart Association.

 

 

Lymphedema care should focus on reducing discomfort

16 Aug

Millions of American cancer survivors experience chronic discomfort as a result of lymphedema, a common side effect of surgery and radiation therapy in which affected areas swell due to protein-rich fluid buildup. After reviewing published literature on lymphedema treatments, aUniversity of Missouri researcher says emphasizing patients’ quality of life rather than focusing solely on reducing swelling is critical to effectively managing the condition.

Jane Armer, professor in the MU Sinclair School of Nursing and director of nursing research at Ellis Fischel Cancer Center, said many insurance providers and health care professionals assess whether lymphedema patients need treatment based solely on how swollen their limbs are. However, several studies have shown that the volume of fluid doesn’t necessarily correspond with patients’ discomfort.

“Practitioners need to treat the swelling while considering patients’ distress. We don’t want to burden them with unnecessary or ineffective treatments,” Armer said. “Health care providers should focus on managing symptoms and choose carefully among various treatments to provide individualized care plans that comfort patients, which may require modifying existing protocols.”

In their literature review, Armer and her colleagues found that Complete Decongestive Therapy (CDT), a comprehensive approach for treating lymphedema involving skin care, exercise, manual lymphatic drainage and compression of the swollen limbs, may be the best form of specialized lymphedema management.

“Patients have different medical needs and come from culturally diverse backgrounds. They have different goals, support systems, pain levels and treatment tolerances. All these factors influence patients’ responses to care, which affects their well-being,” said Marcia Beck, a review co-author and an MU graduate who now works at Truman Medical Centers in Kansas City, Mo.

“Caring for lymphedema patients should be flexible and adjusted to maintain patients’ quality of life,” said Ausanee Wanchai, another co-author who received her doctorate at MU and now teaches at Boromarajonani College of Nursing in Buddhachinnaraj, Thailand.

In a separate literature review, the researchers found that Intermittent Pneumatic Compression (IPC) therapy, in which sequential inflatable devices surrounding swollen limbs are used to increase lymphatic circulation, is beneficial as an adjunct therapy for chronic lymphedema patients who have limited or no access to medical care; patients can use the compression devices in their homes.

Armer said further research is needed to demonstrate the usefulness of various lymphedematreatments, such as CDT and IPC. The literature reviews were the third and fourth in a series of 12 to be published in conjunction with the American Lymphedema Framework Project (ALFP). As director of the ALFP, Armer works alongside clinical experts and investigators to increase awareness of lymphedema and related disorders. The ALFP was founded in 2008 and is headquartered at the MU Center for Lymphedema Research, Practice and Health Policy. Its steering committee and staff currently are partnering with the International Lymphedema Framework (ILF) in producing an updated edition of the ILF Best Practice Document from 2006.

The article, “Palliative Care for Cancer-Related Lymphedema: A Systematic Review,” recently was published in the Journal of Palliative Medicine. Armer’s co-authors also included researchers from MU and the University of Texas. The other review, “Intermittent Pneumatic Compression Therapy: A Systematic Review,” was published in the journal Lymphology earlier this year. Researchers from the NorthShore University HealthSystem, Walter Reed Military Medicine Center and University of Texascontributed to the review.

Join us this Saturday in Columbia

9 Aug

On Saturday, August 11, we’ll meet from 11 a.m. to 1 p.m. at the Armory Sports & Recreation Center Conference Room at 701 E. Ash St.

The event, “Bread of Life: Food for the Soul and for the Body,” will include a delicious and nutritious lunch, a free drawing for cooking tools, and a short session with healthy cooking and safety tips hosted by a Hy-Vee dietician, Cassie McClellan.

We hope to see you there!

Enter our free drawing

9 Aug

Send us an email at midmowalkinginthespirit@gmail.com about your favorite healthy summer food or activity.

We’ll post it on our blog, and you’ll be entered into a free drawing for a $10 gift card to Red Mango, Walgreens or Hollywood Theaters.

Three people will win! Winners will be notified on Aug. 20.

Taste this: Watermelon salsa

6 Aug

Serves 16 – ¼ cup each

The watermelon salsa is on the left.

All You Need:

2 cups chopped watermelon
2 kiwifruits, peeled, quartered and thinly sliced
1 cup diced strawberries

½ cup diced red onion
1 jalapeno pepper, seeded and diced
Juice of one lime

All You Do:

1.  In a medium bowl, combine all ingredients.  Serve with baked pita chips, over chicken or fish or as a refreshing salad alongside a sandwich.

Nutrition Facts per serving: 20 calories, 0 g fat, 0 g saturated fat, 0 g trans fat, 0 mg cholesterol, 4 g carbohydrates, 1 g fiber, 3 g sugar, 0 g protein, Vitamin C 30%.

Source: Cassie McClellan, RD, LD, a dietitian at Hy-Vee on Conley Road. You can reach Cassie at (573) 442-7703 or Cmcclellan@Hy-Vee.com.

August event in Jeff City a success

6 Aug

About 100 people stopped by the Walking in the Spirit booth on Saturday, August 4 in Jefferson City at the Quinn Chapel, AME “Back to School Jam.”

Lindsey Koelling, RD, LD, from Hy-Vee.

Lindsey Koelling, a Hy-Vee dietitian, brought two tasty samples of salsas and some whole-grain chips (see the salsa recipes here and here).

She also gave out fliers with information about healthy snacks and lunchs for kids, such as peanut butter and apple slices, instant oatmeal with nuts and dried fruit, or a low-fat vanilla yogurt parfait with granola and berries.

 

Come to a community potluck dinner in Columbia

5 Aug

Cassie McClellan, RD, LD, hosts events monthly as part of her work as Conley Road Hy-Vee dietitian. You can read about her services here.

On Friday, August 10, at 6 p.m., she’ll provide a brief nutrition less at the CCUA Urban Farm potluck dinner. The address is 1209 Smith St. in Columbia. To attend, all you have to bring is a covered dish and you will learn about food and nutrition and meet new people.

 

Cassie also provides links for news about nutrition in her monthly emails. Here are the ones she included in the most recent newsletter: