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Women’s Voices

“I’ve got things to do and places to go” Breast cancer survivor Izora Earl

Breast Cancer Survivor Izora Earl Izora Earl had every right to be anxious when she found out in spring 2014 that she had an aggressive form of breast cancer.

Breast cancer had claimed her mother and her grandmother.

But Izora wasn’t anxious.

A woman of faith, Izora instead settled into a place of determination. “I was like, ‘OK, Lord, I know you’ve got this. I’m going to break the chain. I’m going to get over this.”

Then it was her doctor’s turn for her faith. “I remember the last thing I said before I went into surgery: I’ve got this. Do you?” Surgeon Kelly Favre looked at her and said, ‘I’ve got this.” Izora closed her eyes and embraced the chance for healing.

Izora, who had a successful lumpectomy at Tucson Medical Center in May, jokes that she just has too much to do to let cancer sideline her. An image consultant who, at 73, is retiring for the third time, she quips she’s planning on being at the mall – or better yet – traveling to some fantastic locale like Costa Rica.

“But in all seriousness, I wish more women would be more aware and take care of themselves,” said Izora, who gets an annual mammogram and credits the technology with catching the disease early, when it is more easily treated. “Women are always so busy taking care of everybody else, whether it’s their kids or their parents or their husband, that they don’t always take the time to do what they need to do for their own health.”

Karen Narum, the women’s health care nurse practitioner at the TMC for Women Breast Screening Clinic, said what many women may not know is that only 5 percent of women have a genetic predisposition to breast cancer. The Clinic does a statistical model with screenings, taking history into account, but for Narum, the bottom line is that preventive care is important. “Really, we’re all at risk for breast cancer. You shouldn’t feel secure just because it doesn’t run in the family, because the vast majority of women with cancer don’t have that family history at all.”

Breast Cancer survivor Izora Earl with dog MistyIzora’s own strength has been tested a number of times. Her father died before she was born. When she was born, doctors didn’t think they could save her – but had underestimated her will to live. She survived four heart attacks in the eight years preceding 2011. She nursed her mother through her illness and then honored her wishes when she finally had to be hospitalized to not be resuscitated – which she describes as the hardest thing she’s ever done. And in 2013, she lost all three of her older brothers in a matter of months to either cancer or heart attacks.

“I’ve always been a glass-is-half-full kind of person,” she said.

Any given day might find the Southeast Side resident working out at a gym or walking on a treadmill to stay in shape.

She has a number of reasons to value her health, with three adult kids who keep her faithful to that treadmill and just gave her a new cell phone to master, not to mention eight grandchildren and one great grand-child. “I just knew then, and I know now, that I’m going to be OK. I’ve got things to do and places to go.”

 

 Mary’s Promise – Live Well Tucson

MarysPromise‘Make a promise to me. Put yourself first for once…Lose the weight.’

After ten years of looking after her ailing mom, Mary Kmak’s own health had slid. Pre-diabetes, high blood pressure, spinal issues, and significant weight gain as a result of extended steroid treatments, Mary, a devout catholic, was unable even to help at mass anymore.

“I took care of my dying Mom, and those last years were devastating watching her suffer…I put her before my health, which I would still do over and over again if I could. It was my honor and pleasure, but in her final days she asked if I would promise her one thing, to lose the weight. Of course, I said yes. ”

After her mom passed away, Mary knew she needed support to keep her promise and so she reached out. A chance viewing of Rachel Tineo’s story on television inspired Mary to ask her physician whether the program Rachel had participated in was available to the public. Her physician put her in contact with a TMC Dietitian.

“I talked to one of the TMC Dietitians. At the time the program wasn’t available to the community, it was only available to TMC employees.” But within weeks of asking, Mary received a phone call from Laurie Ledford RD (aka the Nutritionista) inviting her to take part in a new program called Live Well Tucson for the community.

What is Live Well Tucson?

Live Well is a 10-week program that meets once a week for 2 hours.  During the 2-hour sessions participants hear from an expert the topic of the week (exercise physiologist, dietitian, physician, etc).  The topics covered are preventative care, nutrition, exercise, stress management, happiness, social networks, and sleep.  Participants work with experts to set goals, and how to maintain change.  In addition to the lectures, participants also have the opportunity to participate in a weekly exercise class.

The Lessons Mary took from Live Well Tucson

1. It’s not enough to hear the advice you have to take the advice

Mary took the lectures to heart, “I followed every single tip that Laurie gave, every single tip that Mary gave and every single tip Maria Luisa gave. For example, Mary Atkinson said ‘Get out and take a walk every day. 5 minutes is a great start.’ I started walk the parking lot. It started as just 5 minutes. Today, I walk 45 minutes every day. “

2. Make realistic, achievable goals

Live Well Tucson Intern Maria Luisa suggested making a smart goal. Mary’s response “I have an Exercycle. My smart goal started out as biking 12 minutes 4 times a week on my Exercycle. Now it’s 45 minutes six times a week along with the walking.”

3. Remind yourself daily what your motivation is.

Write what your motivation is on a 3 by 5 card and posting it somewhere you will see every day. Initially, Mary thought, ‘That’s not going to make a difference’ but she did it anyway. Her motivation? A single word – Promise.

“I’ve had set backs. I feel better when I exercise. I push myself. I see my promise card everyday and that pushes me.

4. Be conscious in what you eat, plan & track

“I track what I eat, I itemize my carbs, my calories, my fats. I used to eat out every day. I might get something thinking it was healthy, not counting the carbs or calories. Now, I make everything a head of time. I do all my shopping on the weekend and get everything prepared. I take breakfast and lunch to work. … It’s a big lifestyle change.”

5. Slow and Steady wins the Race

It took time to put it on, it’ll take time to take it off.

Mary’s Results:

Since January Mary has lost 44 lbs, but the success isn’t just measured by weight loss as Mary explains, “My blood pressure has dropped and I’ve been able to cut my blood pressure medication. Within 3 months my sugar level dropped…I appreciate food more. Instead of grabbing a candy bar I get a piece of fruit. I love frozen fruit.”

Mary’s enthusiasm for the program and life is infectious. Her friends and family have noticed an attitude change and greater energy. “She’s more bubbly. She’s coming out of her cocoon.” friend Mary L. shares.

Mary’s sister, Imelda says that Mary is much happier, that the pain Mary was in led her to be cranky on occasion.  Imelda has also been in the program and has lost 12 pounds, reduced her blood pressure, and her blood sugar has declined enough that she no longer needs insulin.

The next phase of the program starts August 22nd and Mary is raring to go, “The continued support from TMC has been helpful. I want to lose another 20 pounds before Phase 2 starts.”

Mary’s advice to other women:

“Put yourself first for one time and don’t quit. I had every reason to quit. I had no coordination, no strength, no endurance. Now, I walk that straight line. As a devout catholic, I attend mass. For years I couldn’t help, I was afraid I would drop the wafer and wine during communion. The church aisle is now my red carpet. I have the energy of a 34 year old. “

Update – May 5th, 2015

Mary has now lost a grand total of seventy pounds and it is not only reflected in the clothes she wears and her energy level, but also at the doctors office. She’ll be sharing her journey and experience on the Live Well program June 2nd at The Core at La Encantada.

Women’s Voices – Donna’s Heart Story

Donna Ruboyianes - a woman's heart storyWith her fresh face, winning smile and youthful disposition, most would never guess that Donna Ruboyianes is mom to seven children and grandmother to seven more. And to see her working out in the gym you’d never guess that just over a year ago she had a heart attack (myocardial infarction) while undergoing angioplasty.

It was Donna’s involvement in the American Heart Association’s Go Red for Women campaign that alerted her that something was wrong with her own heart when odd symptoms started to show. Unlike the vast majority of women who list cancer as their main health concern, Donna knew from her work with the local chapter of the American Heart Association that heart disease was the number one killer of women.

Myth: Heart disease is for men, and cancer is the real threat for women

Fact: Heart disease is a killer that strikes more women than men

Heart disease kills more women than men and is more deadly than all forms of cancer combined. While one in 31 American women dies from breast cancer each year, heart disease claims the lives of one in three. That’s roughly one death each minute. Do you know myth from fact? Check out more from the American Heart Association’s Go Red for Women.

Out shopping on Black Friday 2012, Donna started to experience some atypical symptoms – swelling in one leg and wheezing. She knew something was wrong and made an appointment to see a doctor immediately. Within the week Donna was scheduled for angioplasty.

What is angioplasty? Angioplasty is a procedure in which a narrowed section of the coronary artery is widened. Angioplasty is less invasive and has a shorter recovery time than bypass surgery, which is also done to increase blood flow to the heart muscle but requires open-chest surgery. Most of the time stents are placed during angioplasty. An angioplasty is done using a thin, soft tube called a catheter. A doctor inserts the catheter into a blood vessel in the groin or wrist. The doctor carefully guides the catheter through blood vessels until it reaches the blocked portion of the coronary artery. For more information on angioplasty please see the TMC Healthwise Encylopedia.

Angioplasty is usually a short procedure, but during the procedure Donna had a heart attack. The following August Donna underwent bypass surgery.

While the angioplasty and bypasses address the immediate blockage, it isn’t a ‘quick fix’ as Jenna Edwards a TMC cardiac rehabilitation nurse explains, “You might hear someone say, ‘I had a stent’, but that isn’t changing their risk factors. Here in cardiac rehab we get to talk about life long changes. Cardiac rehab can be instrumental in helping make those life changes and creating new habits.”

Marilyn Woods RN expands on the importance of cardiac rehabilitation, “Cardiac rehab is especially important to prevent another event which those who have had a heart event are at high risk for.”

For Donna, like many heart patients, making cardiac rehabilitation a priority has not been easy. “It’s so easy to fill up your day.”  With seven children and seven grandchildren that’s easy to imagine, but as Donna bluntly adds, “If you don’t make time for yourself, you won’t have any time.”

For Donna Ruboyianos knowing that women often exhibited the less common symptoms of heart disease and recognizing them, and then acting on her suspicions may have saved her life. Today Tucson Medical Center’s Cardiac Rehabilitation program is helping Donna to return to her activities and gain a better quality of life. She wants women to be aware of the symptoms of heart disease and to act when they experience them,

“It’s easy to attribute symptoms to being overweight, or having slept in a difficult position, but don’t ignore them. “

No, this isn’t Irritable Bowel Syndrome – Monica’s Journey to Gluten-Free

MOnicaGF

“Before I went gluten-free, I was sick. Very sick.

I had been told that I had Irritable Bowel Syndrome since high school with “nothing we can do about it” response for a remedy. For the most part, it was merely annoying until about 1996.

Is it 'just' Irritable Bowel Syndrome or something more? Monica describes her #Celiac journey #ibs #glutenfree… Click To TweetIn 1996, the frequency of trips to the bathroom started to increase from a few times a day to around 12-15 times a day in 1998. In the meantime, I developed a rash on my legs and arms. It started on my shins, and I thought it was poison ivy. However, it didn’t go away. It spread.  I thought I had ringworm or some other type of fungus.”

Dermatitis herpetiformis is linked to celiac disease. Symptoms of dermatitis herpetiformis tend to come and go. Symptoms include:

  • Extremely itchy bumps or blisters, most often on the elbows, knees, back, and buttocks
  • The rash is usually the same size and shape on both sides
  • The rash can look like eczema
  • Some patients may have scratch marks instead of blisters
    http://www.nlm.nih.gov/medlineplus/ency/article/001480.htm

“I also developed a proclivity for sinus and ear infections that would go on for months. They were of the degree that I couldn’t hear sometimes. I took a lot of antibiotics and steroids during this period. I made many visits to the doctors and dermatologists. I lost over 25 pounds. I had chronic fatigue and would fall asleep at work regularly in my late 20’s. I had heart palpitations just walking. I had a lump removed from my breast (luckily not cancer). I could go on, but I’ll spare you. The bottom line was I thought I was going to die (seriously) and didn’t think I could take care of myself anymore.”

What are the symptoms of celiac disease?

Symptoms of celiac disease include:

  • Gas and bloating.
  • Changes in bowel movements.
  • Weight loss.
  • Feeling very tired.
  • Weakness.

“After exhausting traditional medical routes, a friend of mine recommended that I see an eastern medicine doctor. His first response to me was that he thought I had a wheat intolerance. I didn’t buy into it right away, but once I stopped eating wheat, I felt enormously better. When I ate something with barley or oats (non gluten-free oats), I started itching like mad. Eventually, I just stopped eating all gluten and never looked back.”

In recent years the medical community has recognized the celiac disease are not as rare as once thought. While roughly one in a hundred individuals have celiac disease, but the vast majority go undiagnosed. For most people with celiac it takes more than four years to be diagnosed(1).

Currently, the only definitive way to know whether you have celiac disease or not is to keep on eating gluten is to have an endoscopy.

The endoscopy will allow the physician to view your small intestine and to take a small tissue sample (biopsy) to analyze for damage to the villi.

The only definitive way to diagnosis celiac is with a biopsy. Click To Tweet

“It was much more of a challenge in 1999 than it is in 2013. In 1999 I walked into a Wild Oats looking for Garflava flour and nobody had ever heard of it. Wheat-free meant that oats and barley flour were substituted in place of wheat flour. Because I started gluten-free so long ago and have been careful about where I eat out, I have not kept up with all the opportunities where most restaurants now have gluten-free menus. There is a much greater awareness of what gluten is especially in restaurants. I have noticed though that many people now are gluten-free, but sometimes eat gluten, which complicates eating out for those of us who are very cautious of even small amounts of contamination.”

Today there is a broader awareness of the impact of celiac and related gluten intolerance issues within our population than when Monica first started her journey. Part of the focus of the recent Gluten-Free Awareness Expo hosted at Tucson Medical Center was to share information to the medical community as well as our larger Tucson community to help medical professionals recognize the somewhat nebulous symptoms of celiac disease and help patients. Medical professionals were able to obtain continuing education credits through participation in the special sessions.

Monica’s Favorite Gluten Free Simple and Easy Dish:

Salmon, Dill, Lemon & Capers

“All meals I prepare are gluten-free and as simple as any cooking. I eat a lot of greens, veggies and meat, which are all naturally gluten-free and agree heartily with my body and well-being.”

Ingredients

Fresh salmon
A bunch of fresh dill (dried will do, but fresh is better)
A couple of lemons
Small jar of capers (be sure that they are gluten-free. Some capers are packed in vinegar which, dependent on the type of vinegar, may contain gluten.)

  1.  Place salmon on foil, skin down. Foil should be sufficient that it can wrap the salmon completely.
  2. Soak the fish with the juice of one lemon for 20 minutes of so. Turn the grill on to a medium-high heat.
  3. After the lemon has had chance to soak in, slather the fish with a couple of tablespoons of olive oil and dump the jar of capers over the fish including a little of the caper juice.
  4. Chop dill into fine pieces and slather over fish.
  5. Wrap foil around the fish and place on the grill. Grilling time will depend on the thickness of the fish. For every inch estimate 10 minutes at a medium-hot grill setting. We start testing for flakiness of the fish at about 8 minutes with a fish an inch in thickness.

Serve with roast potatoes or rice, and grilled vegetables. We’re partial to grilled asparagus with lemon juice.

Yummy and simple - Monica's #GlutenFree Salmon & Capers dinner #food #healthy Click To Tweet

Why I’m Gluten-Free – Maggie’s Story

MaggieGFMaggie is at the start of her gluten-free journey. She shares in this post why her physician has recommended that she attempt a trial elimination of gluten from her diet. 

How long have you been gluten-free?
About six weeks
Why did you decide to go gluten-free?
Following an ER visit where my airway began to close off, I went to my doctor’s to figure out what was going on. They sent me for skin prick tests and among the positive responses, I showed allergies to wheat and to eggs. We don’t believe that is what caused my severe allergy response, but it fitted with what I noticed previous about my body’s reactions to changes in my diet. Now a wheat allergy isn’t the same as a gluten allergy. Gluten is a specific protein found in wheat and in other foods. I was just tested for the broader wheat category, but given symptoms including skin and digestive issues I’ve been experiencing for a long time, that correlate with gluten intolerance my doctor suggested I try an elimination trial, removing among other foods, gluten and egg from my diet.
Maggie is following this trial elimination under the guidance of her physician. It maybe that after this elimination period and a subsequent reintroduction of foods, an intestinal biopsy would be suggested to test for Celiac disease. For Maggie to be identified as having Celiac disease she would need to have an intestinal biopsy. 
 What are you finding the challenges associated with being gluten-free and why is it a challenge?
Since I got the results and I’ve gone gluten-free I get hungry all the time. I have to eat every 2-3 hours. I think it’ll even out, but in the meantime finding wheat free snacks that don’t contain eggs or nuts, which I also found I have issue with, is difficult. If I’m out and about and it’s hot, I can’t just take a piece of fruit. I’ve also been vegetarian for years, which adds another layer of complexity to it.
What item contains gluten that most surprised you?
Soy Sauce! Actually, right now it’s the eggs that keep surprising me, they’re everywhere!
What is a simple gluten-free meal that you like to prepare?
I’m keeping it simple right now. Humus and a veggie medley is an easy go-to-meal.
Maggie’s frightening experience and trip to the Emergency Room prompted this trial elimination, but for most people who suspect that they may have celiac disease or a gluten intolerance, the Southern Arizona Celiac Support Group has the following suggestions:
1. Identify the symptoms that you experience. Take that list to your doctor to discuss your risk for celiac disease.
  • Abdominal bloating, pain and/or distention
  • Gas
  • Indigestion and/or reflux
  • Diarrhea or >3 loose stools daily
  • Constipation
  • Vomiting and/or nausea
  • Pale, ‘fatty’ or foul-smelling stools that float
  • Fatigue
  • Joint and bone pain
  • Failure to thrive
  • Easy bruising
  • Hair loss
  • Deficiencies in B-Vitamins
  • Dental enamel defects, cavities
  • Cracks in sides of mouth
  • Sensitivity to bright light or sunshine
  • Redness or swelling of the tongue
  • Nose bleeds
  • Muscle cramps
  • Difficulty seeing at dusk or at night
  • Tingling numbness in the legs
  • Anxiety and/or depression
2. Don’t go gluten-free without being tested. The accuracy and reliability of blood tests and intestinal biopsy rely on gluten in the diet. If you are nit eating gluten, then these tests cannot reliably detect celiac disease.
Celiac was once considered a rare inherited disease, but we now know 1 in 133 in our population have celiac disease making it one of the most common inherited disorders. A vast majority of individuals with celiac are undiagnosed. This Sunday Tucson Medical Center hosts the Gluten Free Awareness Expo organized by the University of Arizona Gluten Free Club. The Gluten Free Awareness Expo will be held at TMC’s Lifegain Park, from 12 noon to 4 p.m.Sunday, Nov. 17 – no charge to attend.  Lifegain Park is on the north side of the TMC campus, a short distance behind the new Orthopaedic and Surgical Tower.

Emily’s Quest – From Bread Lover to Celiac Patient

Gluten-free pasta, gluten-free bread, gluten-free cookies – In most large grocery stores today you will see a growing section of gluten-free processed foods. What’s this all about? Is gluten really such a problem?

EmilyGFFor individuals with Celiac disease, a very real and potentially very serious, inherited autoimmune disorder, gluten in their food can be crippling.

When affected individuals consume food with gluten (a group of proteins found in wheat, barley and rye) the immune system triggers a response that isn’t normal and the small intestine villi are damaged in a manner that means the individual can’t absorb nutrients in food properly. Untreated celiac disease can lead to anemia, osteoporosis and raise risks of lymphoma among other issues.

Celiac disease, once considered a relatively rare disorder, is now recognized as one of the most common inherited disorders. It is estimated that one in a hundred have the autoimmune disorder.

Emily Rich, a Psychology Senior at the University of Arizona, is one of those one in a hundred. Emily has celiac. She is also President of the UA Gluten Free Club which is organizing the Gluten-Free Awareness Expo at Tucson Medical Center this Sunday, November 17 from noon to four pm.

We sat down with Emily to ask a few questions:

1. How long have you been gluten-free?

Two years and three months

2. What prompted the decision to become gluten-free?

All throughout high school I got sick on a fairly regular basis and never knew why. My mom, a nurse, always said I just had a sensitive stomach. Most people chalked it up to Irritable Bowel Syndrome, but some even suggested that I might have an eating disorder.

During my freshman year of high school I began getting sick (gastrointestinal issues) several times a week and decided something had to be done. I began researching various food intolerances and tried each one without success. I thought that gluten couldn’t be my problem because I was a “bread kid” and ate gluten all the time. As it turns out, I stopped eating gluten and stopped getting sick.

Looking back now, I took naps every day in high school and had considerable fatigue. It took 5 years to figure out what was wrong, but after only a couple of months of being gluten-free, I was a new girl!

Note: The average time it takes for someone to get diagnosed with celiac disease is six years.

After identifying gluten as the culprit in her ongoing health woes, Emily sought out help from physicians and had an upper endoscopy and a serological test. *

3. What have you found to be the greatest challenge associated with being gluten-free and why is it a challenge?

Being a college student, my friends often go out to drink beer and eat cheap food. Inexpensive food, pizza, sandwiches, wings and chinese food is not exactly the safest food for a celiac.

The typical gluten-free go-to is a salad (no croutons) and I bring my own dressing, but as you can imagine, this gets old fast.

I think what makes it more challenging is that many restaurants are offering gluten-free menu options but they are not going through the certification process or looking into their kitchen protocols to actually serve a meal free of gluten.

I have friends tell me that a pizza joint has gluten-free pizza and it can be difficult to explain to them that with that amount of flour in the kitchen it can be really hard to trust that my meal won’t have any gluten and I won’t get sick. This often translates into being a picky eater or just difficult. — Holidays with the family are a whole other issue!

4. What most surprised you to find out it had gluten in it?

Gum! Many brands of gum are gluten-free including trident, orbit, eclipse, extra, and Wrigley, but there are a few to watch out for. Steer clear of dentine, stride, chiclets, and the ever-delicious fruit stripe zebra gum!

Most recently they have come out with new research on orthodontic retainers containing gluten – look out for the plasticized methacrylate polymers! Who would have thought?

Emily shares this simple gluten-free meal:

Spaghetti Squash Casserole

1. Cook the spaghetti squash however you like. One suggestion:

Slice the spaghetti squash in half lengthwise. Scoop out pulp and seeds while raw. Place cut side down on to baking dish or cookie pan and place in oven at 375 degrees Fahrenheit for thirty to forty minutes.

2. Once cooked, scrape the insides of the squash out with a fork and place in a small (individual-size) casserole dish.

3. Add pasta sauce (with or without meat and seasonings) and sprinkle some mozzarella and parmesan cheese on top. Bake just long enough to heat the sauce and melt the cheese. It’s a great healthy alternative to pasta, and tastes just like spaghetti.

*While the definitive test for diagnosis is a small intestine biopsy, there are some serological tests that are used to screen for celiac disease. An elimination diet might lead one to suspect gluten, but for the tests to be effective it is recommended not to go gluten-free in advance as the results from the biopsy are not then representative of your villi when it is subject to gluten.

In upcoming posts we will share what Tucson Medical Center is doing to help keep it’s gluten-free patients safe.

What are the odds? TMC baby is third generation to share an Oct. 2 birthday!

New mom Sarah Gutierrez with a peaceful baby Sabella

Oh baby!

Say hello to Sabella Sarai Gutierrez-Contreras.  The 7 lb., 8 oz. baby girl was born on Wednesday, Oct. 2.  That’s exactly 24 years after her Aunt was born, and 54 years after her Grandma was born.  That’s three generations of women in one family born on the same day!  So what are the chances of three generations sharing the same birthday?  A slim 1 in 48,627,125.

No, it wasn’t planned that way.  “I wasn’t due until Oct. 10.  I went to the doctor for a check-up on October first, and she said ‘this baby isn’t going to wait until the tenth.  I think you’ll have her either today or tomorrow,’” said Sarah Gutierrez, Sabella’s mother.

The doc was right.  Little Sabella came into the world at 11:46 a.m. the next day.  “I feel ecstatic and very blessed,” said Grandma Lourdes Pizarro, a.k.a. “Nana.”  Aunt Jessica Gutierrez said, “I was actually two weeks late, and was born on my Mom’s 30th birthday.”

New mom Sarah Gutierrez with a peaceful baby Sabella

"Nana" Lourdes Pizarro holds baby Sabella with her daugher, Jessica Gutierrez (Sabella's aunt)

“Nana” Lourdes Pizarro holds baby Sabella with her daugher, Jessica Gutierrez (Sabella’s aunt)

Three generations all born on Oct. 2
“Nana” Lourdes Pizarro holds baby Sabella. Lourdes’ daugher, Jessica Gutierrez (Sabella’s aunt) poses with her new niece.

Sabella’s potential birthday was topic of big discussion at Sarah’s baby shower.  “We played a game where we guessed the day she would be born,” explained Jessica.  “Of course my mom and I guessed Oct. 2.  I guessed 5 a.m., and my mom guessed 9 p.m.  I think I won,” she laughed.

Baby Sabella joins big brothers Genaro, age 5, and Josiah, 16 months.  Congratulations to the Gutierrez-Contreras family!

You can bet Oct. 2 will be one big party at the Gutierrez house from now on.

Perhaps they should have bought a lottery ticket on the lucky day!

Posted first on TMCAZNews.

When the common symptoms are misinterpreted – Nancy’s battle with Ovarian Cancer

This is Nancy’s story:

ovarian cancer, tucson, nocc, In June of 2010, I was diagnosed with Ovarian Cancer.

The date was June 19th, and it was 4am.

My belly had suddenly begun to grow alarmingly, and my husband insisted we needed to go to an emergency room.  The news at delivered brusquely by the ER doctor, who said, “You have masses growing on your ovaries, and it has metastasized.  I’m so sorry.”  And with that, he turned and strode out of the room.  Even though this is a paraphrase, the brevity of it was what allowed my husband and I to remember most all of what was said.  It was a brutal way to learn bad news.

I was 61 years old at the time.  Both my husband and I initially refused to believe a cancer diagnosis. Cancer happened to other people.  I had taken care of myself.  I never got heavy, I ate right, I exercised.  I had no cancer in my family.   Both of us were stunned.

Two days later, I had surgery.  The cancer was typed at Stage IIIC.  I had a complete hysterectomy, a removal of as many of the tumors as the surgeon could get to, and a removal of the omentum, which itself contained many of the tumors.

I went home five days later, in the afternoon.  Following dinner about twenty-four hours later, I suffered a catastrophic hemorrhagic stroke in the right frontal lobe of my brain.  My left side went limp entirely, and I spent the next several days in the Critical Care wing of a Tucson hospital.  I was intubated as the doctors waited to see if my brain would stop bleeding and swelling.

Once the tube was removed, and I was able to breathe on my own, I was moved to the Physical Therapy floor of the same hospital.  One week later, I started chemotherapy for the cancer.

Women afflicted with ovarian cancer often have sought medical help for discrete symptoms.

Looking back now to the symptoms leading up to the diagnosis of Ovarian cancer, I am struck with how many opportunities I had to be successfully diagnosed at an earlier stage.

Abdominal, pelvic and lower back pain

For about three years, I had dealt with pain in my side.  After many complaints to at least two doctors, the diagnosis was a bad gall bladder.  When the gall bladder was removed, about 18 months before the cancer diagnosis, it actually was damaged, so everyone concerned imagined that the problem had been fixed.  But the pains in my side persisted.

Urinary Issues – Frequency, urgency, infections

At the same time I had the pain in my side, and even before the gall bladder surgery, I had recurring and frequent bladder infections.  Or so I thought.  They hurt like bladder infections, but on a couple of occasions the doctor reported that there were no white blood cells present.  As a last resort, my husband and I went north for an appointment with a doctor in a nationally prominent clinic, who also reported finding no white blood cells.  Nothing abnormal, the doctor said.  “Probably rough sex”, he said.

Bowel changes

Then came the diarrhea, in the last several months before the cancer diagnosis.  Doctors dismissed it as a consequence of the gall bladder removal.  But it went on for a year.

Abdominal bloating or fullness

Through all of this, my tummy started to swell.  No amount of dieting would reduce my waist size, and I started to think that it was just a function of my age.  But it continued to grow.

Loss of energy

Finally, I was overwhelmed with fatigue.  Numbing fatigue, the kind that gives you no say in whether you need to sleep in the afternoon.  Sometimes I thought if I didn’t sit down or lie down, I would fall down.

But nobody connected the dots.  All of the symptoms were, taken discreetly, able to be explained away as the consequence of something like the gall bladder removal.  And the truth is that I came to my doctor with one symptom at a time, to be treated individually.

The symptoms of ovarian cancer, individually, might be dismissed, but persistent symptoms should be addressed.

Had I to do it over again, I would absolutely say, “I have too many bladder infections, pain in my side, terrible fatigue, my belly is swollen, and I can’t get very far away from a toilet.  What’s going on?”

So I had my first three chemotherapy sessions in the hospital, where I stayed for a little more than two months in the Physical Therapy section, recovering from the effects of the stroke. I had to relearn to swallow, eat, tell time and read.  My left hand came back before the rest of the arm, but I had some use of both of them by the time I went home.  The left leg has never fully recovered; the region of my brain that controls the hamstrings has been damaged.  Nor will my ankle cooperate.  I have foot drop that limits the use of my left leg.

I came home in a wheelchair, but graduated in a few months to a walker, and from there to a cane with the help of a Bioness device fitted below my left knee that stimulates muscles to lift my ankle and toes.  With that, I can carefully and slowly, walk.

The first chemotherapy regimen lasted approximately six months.  I lost every stitch of hair on my body (Taxol and Cisplatin), but it kept the cancer at bay for nearly a year.  When it came back, I had some frustrated, nervous nights. Again I was prescribed chemo for another six months, but the final CA125 numbers were averaging 15, and I thought, “That’s that.”

Then in November of 2012, the cancer returned once more.  This time–nine months later–the chemo treatments haven’t worked.  So far, I have had to resort to radiation treatment for a tumor that has grown in three months from the size of a small lemon to that of a large softball.  The radiation is intended to shrink the size of the tumor, or kill it, and allow a return to chemotherapy.  My oncologist has already told me that when chemo starts again, it will be a new drug, the fourth chemo drug in nine months.

As I try to make sense of what’s happened in the last three years, the truth is, I can’t.  I can’t understand how I could have been so healthy and, so quickly, catastrophically ill.  As strange as it sounds to say it, the stroke has been far worse than the cancer.  The cancer may one day take me away, but the stroke has robbed me of much of whatever life I had left.  (I wish I had known the symptoms of ovarian cancer when I had so many common symptoms.)

I try to remain upbeat that the cancer can be successfully treated.  Miracles do happen.  I have hundreds of people who keep me on prayer lists.  I have many, many good friends who have been supportive.  I appreciate the support of my family, and I have trust in my oncologist.  The rest of the story has yet to be written.  I’m hopeful to be able to write the sequel in 2014.  And more beyond that.

Nancy encourages women to  know the symptoms of ovarian cancer and to challenge their health care providers when faced with the symptoms of ovarian cancer not with the question, “Is this ovarian cancer?” but “Prove to me it isn’t ovarian cancer.”

All month TMC for Women has been sharing the stories of local women who have faced ovarian cancer. You can read their stories here

The National Ovarian Cancer Coalition raises the voices of survivors and victims’ families, to raise awareness, to end the silence, so that women know the symptoms. Our local Tucson chapter provides support and focuses on awareness and education. Check them out on Facebook. 

September is Ovarian Cancer, Prostate Cancer and Childhood Cancer Awareness month

How cancer is like baseball – Meredith shares her journey as an Ovarian Cancer Survivor

“When I was diagnosed with cancer, I got drafted to a team I really had no interest in. I felt alone, but soon realized in order to play the game; I needed to build my roster. This was a humbling learning experience. Too quickly I realized, who I thought would be on the roster, wasn’t interested in playing. It takes a lot of strength to realize when some players just simply – need to be traded….”

pregnancy, cancer diagnosis, ovarian cancer, infertility

Meredith and her ‘whisperer’ Ryan

Meredith Mitstifer raises her voice to ovarian cancer, a disease that whispers, and raises it so that women will not have to walk this path alone.  Her journey has been blessed with time, unlike a majority of ovarian cancer patients, and she shares it with us so that those who face this silent killer will not do so alone.

For years Meredith suffered with what was deemed “likely endometriosis”. Her symptoms, starting at the age of 19-years-old, included a feeling of fullness, bloating, painful intercourse, and frequent urination. And while most are signs of ovarian cancer, Meredith was young and ovarian cancer was never considered, discussed nor imagined. She underwent several laproscopic surgeries, but the symptoms persisted.

I just learned to “live with them.”

My doctors informed me that my continued symptoms were from “excessive scar tissue,” the residual effect of the surgeries… I had frequent ovarian cyst ruptures that would require emergency admissions. I was encouraged to have a baby to help ease symptoms related to my “endometriosis.” I really began to think it was just all in my head, and I just needed to get stronger and deal with the constant “uncomfortableness.”

That ‘just have a baby’ advice turned out not to be so simple,

My husband and I were married for a few years, and we were not able to get pregnant. We finally sought the expertise of a fertility specialist to assist us. During an exam, minutes prior to insemination, an “unknown mass” was found on an ultrasound and the procedure was put on hold until I was able to consult with a “gynecologic oncologist.”

Cancer? I was told not to worry – just a 5% chance and perhaps just my gynecological history repeating itself. After this consult, we decided to wait a month to see if this unknown mass would disappear and avoid surgery. The mass tripled in size and I was advised to have it removed immediately.

I attended my pre-operative appointment for surgery, and was informed that ironically, I must have conceived naturally within the past month of waiting. I was given two options, I could continue with immediate surgery, but abort the child, or wait until I was four months gestation and remove the mass. I chose the latter.

When Meredith was four months pregnant she had surgery to remove a large tumor on her left ovary. As it was being removed the tumor ruptured, spreading its contents,

Five days later I was both pregnant and diagnosed with clear cell, epithelial ovarian cancer at the age of 30 via a phone call from my gynecologist. Yes – a phone call and probably not the most ethical way to handle this kind of information. I had so many questions, with very little answers. A referral was made back to the gynecologic oncologist. Consults, research, and then a second opinion at Johns Hopkins all while attending prenatal care was a bit overwhelming.

The statistics at the time were one in 25 million women have had ovarian cancer at my age, let alone while being pregnant. What that translated to me was – no research or knowledge of how to effectively treat me.

Diagnosed with ovarian cancer and finally pregnant, Meredith faced another difficult decision – should she have treatment while pregnant?

I decided not to have any treatment until after I delivered. A C-section was tentatively scheduled in February and would be followed by a more comprehensive staging surgery, and a possible hysterectomy should the other ovary and fallopian tubes appear infected.

Meredith sought a second opinion:

My second opinion at Johns Hopkins actually convinced me that a radical hysterectomy, despite its prevalent recommendation for those with ovarian cancer, should be carefully considered given my age, child bearing wishes and inability to effectively treat menopausal symptoms at a young age. Despite a significant risk, I was convinced to look at quality of life factors, if the possibility existed that a clear ovary was observed. There was little confidence in where the cells might have spread during the rupture, however once inside, my physicians could get better answers.

Meredith’s son decided that he wasn’t going to wait until February to be born,

February obviously was not my destined month to deliver and on New Year’s Eve 2002, my son, and might I add s fine little tax break, was born premature by 5 weeks via C-section.

But what of her cancer? No longer pregnant, the surgeons could biopsy other areas of Meredith that they suspected might be cancerous.

My right ovary appeared “clear” and the decision although rare, was made to keep my ovary. A comprehensive staging surgery occurred, a more thorough “clean up” of my left side including complete removal of left fallopian tubes, additional biopsies of areas they could not test while pregnant, and an appendectomy since my type of cells are likely to attack there next.

Amid the bliss of a new baby,  the sleep deprivation typical of all new parents, and the extra worry associated with a premature baby in the NICU, Meredith faced chemotherapy and the loss of someone she had expected to be a main team player as her spouse and co parent,

I began months of IV chemotherapy. The side effects began. I was lethargic, nauseous, and despite willing it hard to remain with lots of hairspray, I lost my hair.

My son was on a breathing monitor, my parents left their lives in Arizona to help with care giving, and if not blown away enough, my husband informed me that he quote “didn’t really mean in sickness and health.”

Here is when I realized the journey was far bigger than I could have ever imagined.

Fear became my stepping stone to empowerment. I relinquished what I could not control and decided to ride the waves and swim as best as I could. This of course would never have been possible without physicians that truly took the time with both me and my family, explored all our options, and genuinely cared about my well-being. They were so accommodating, giving of their time, and complete attention…I was blessed to have a team of gynecologic oncology physicians and nurses that exemplified true professionals in every way.

Looking back, the physiological symptoms of ovarian cancer were always there but I was never considered at risk. Why? I was young and did not have a family history of breast, colon or ovarian cancer. However – I had symptoms that were overlooked for years. It’s important to note woman of all ages are at risk, and it only takes some risk factors to be present to receive the diagnosis.

You don’t need to have a certain amount of checks in the boxes – to screen more thoroughly. Early detection saves lives. Although there are no reliable screening tests, observation, exams – vaginal and anal, and active listening to a patient’s symptoms do exist.

What happened next?

My life was forever changed. I packed up my infant son, my dog and moved to Arizona to finish my treatment, complete my doctorate, and refocused my dissertation research on perceived partner adaptation and psychosocial outcomes for cancer patients. Little did my husband know how greatly he impacted my academic focus and led me to publish and present research that stemmed from his behaviors and life choice to not be a caregiver, father or husband.

I stand before you, over 10 years strong. I love baseball. My cancer journey has taken on similar metaphorical powers of America’s past-time sport when I reflect on my experiences – When I was diagnosed with cancer, I got drafted to a team I really had no interest in. I felt alone, but soon realized in order to play the game; I needed to build my roster. This was a humbling learning experience. Too quickly I realized, who I thought would be on the roster, wasn’t interested in playing. It takes a lot of strength to realize when some players just simply – need to be traded….

ovarian cancer survivor, cancer diagnosis while pregnant,

Meredith and family

Today, Meredith has remarried and her family has grown. Her son is no longer a babe in arms, but 11 years old and has two brothers. Meredith finished her doctorate and is a strong and healthy voice raising awareness about ovarian cancer and the importance of caregiver support.

Meredith has this message to medical professionals:

  • Not only treat, but to be mindful of your patient’s journey
  • Assist them in building what team they need to survive, heal, and rebuild, through all the curve balls thrown their way in the cancer journey.
  • Always evaluate your team roster and play on the team that shares your dedication, ethics, and professionalism. Survivors can’t play the ball game alone. They will look to you for answers, and even if you don’t have them, be honest.
  • Listen to survivors, and know you play such a crucial role in the lives of those suffering, struggling and healing.

Her wish? That women never need to “survive” or walk this journey alone.

The National Ovarian Cancer Coalition raises the voices of survivors and victims’ families, to raise awareness, to end the silence, so that women know the symptoms. Our local Tucson chapter provides support and focuses on awareness and education. Check them out on Facebook. 

September is Ovarian Cancer, Prostate Cancer and Childhood Cancer Awareness month.

If you were given the chance to save one person you love from a cancer diagnosis would you take it? Here is your chance – The American Cancer Society is currently registering and enrolling Tucsonans for a longitudinal study (CPS-3) and Tucson Medical Center will be an enrollment site. It takes about half an hour for the initial appointment, a little time filling out a survey, no cancer diagnosis other than basal or squamous cell cancers, and between the ages of 30-65. For more information watch ourTMC for Children blog for an upcoming post with a personal story and the importance of CPS-3 and check out the American Cancer Society’s page.

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Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown
Walk on, walk on with hope, hope in your heart
And you’ll never walk alone

You’ll never walk alone
You’ll never walk alone

You’ll never walk alone – Rodgers and Hammerstein