Posts Tagged ‘Patient Story’

Mayo: My Best Hope for Treating My Rare Cancer

January 20, 2011

Mayo Clinic had already been a source of invaluable consultations for my long-time autoimmune Sjogren’s Syndrome and for genetic counseling to ascertain potential genetic predisposition for the autoimmune conditions, cardiomyopathy and cancer that populated my family tree.

But late in 2008, skilled staff at Mayo Clinic in Rochester, Minn., greatly increased the odds that I’d be alive to write this blog entry at the beginning of 2011. I’ll be forever grateful to the surgical, oncology, gynecology, digestive health and complementary/integrative medicine staff that have provided medical treatments and ongoing consultations for my metastatic appendiceal adenocarcinoma.

Dianne Rhein

Light vaginal bleeding in the setting of a prior total abdominal hysterectomy began late in September 2008 while I was at the University of California in San Francisco participating in an international genetic study of Sjogen’s Syndrome. A biopsy at Luther Midelfort – Mayo Health System in my hometown of Eau Claire, Wisc., in late October revealed adenocarcinoma consistent with a colorectal primary. While my diagnostic colonoscopy revealed no signs of colon cancer, the staging CT scans revealed an appendiceal mass and a vaginal cuff mass. Surgical consultations were set to begin November 18 at Mayo.

Pulsating lower right quadrant pain landed me in Luther Midelfort’s Emergency Room on the afternoon of November 5th. The Emergency Room doctor treated my pain, and once my condition was stabilized, sent me off to Mayo Clinic in the middle of the night with plans to see Dr. Donald Jenkins, a critical care surgeon stationed at St. Marys Hospital, to serve as the lead for my medical team.

A wide range of consulting white-coated professionals were in and out of my hospital room in the following days. Appendix cancer is very rare. I had confidence that my medical team was well-prepared for all possible scenarios. Surgery took place on November 11 and an intact appendix, 14 lymph nodes, 12 inches of my colon, the tumor embedded in my vaginal cuff and enough tissue to assure clean margins were all removed. A smiling Dr. Jenkins announced to my anxious siblings that the surgery had gone “better than textbook.”

My post-surgical consults a few weeks later included Dr. Jenkins, medical oncologist Dr. Axel Grothey and internal medicine physician Dr. Amit Sood, with Mayo’s Complementary and Integrative Medicine program that I’d read about months ago in a Mayo Clinic newsletter. Dr. Grothey has consulted closely with my Midelfort Clinic oncologist Dr. Sandeep Basu to guide my chemotherapy regime. Twelve rounds were provided at Luther Midelfort’s Cancer Center from late December 2008 to mid-June 2009, with quarterly CT scans, blood work and Dr. Grothey consults at Mayo. I have found the office visits I’ve continued with Dr. Sood particularly valuable, in addition to his paced breathing DVD (also available as an IPhone app) and his Log On book detailing his many recommendations for mind-body healing.

Unfortunately vaginal bleeding in mid-February 2010 followed by a biopsy confirming vaginal wall invasive grade 3 adenocarcinoma of the appendix had metastasized. PET/CT scans also identified multiple peritoneal nodular regions suspicious for tumor recurrence. I started back on chemotherapy the end of March 2010, this time of a palliative nature. Surgery was deemed not an option. The cancer is now considered advanced, incurable and eventually terminal. I just completed chemotherapy treatment 27 at Luther Midelfort.

While in surgery at Mayo Clinic way back in November 2008, my sisters started a Caringbridge page for me. I’ve now have over 15,000 visits. This venue serves as a vehicle for me to share my
experiences and feelings and to gather up love and support from all over the country. Good friends here in Eau Claire helped me organize a “Share the Care” Morning Glories Circle of Care network to lend practical assistance and encouragement. My many years as a social worker with older adults and disabled persons continues to be an asset for me at this juncture, particularly my years with Hospice.

I’ve arranged for my body to be donated to Mayo Clinic for medical research, continuing the family traditions of my father Jim who died of cardiomyopathy and my sister Mary who died of ovarian cancer. I continue to value my quarterly visits to Mayo, where I always stop by for a few quiet moments in the life-affirming meditation chapel. Staff at the Stephen and Barbara Slaggie Family Education Center has kept me apprised of any up-to-date research articles on appendix cancer. I was thankfully able to participate in a brown-bag session on Intensions for Healing which connected me with other cancer patients intent on living a full life.

I look forward to receiving chemotherapy in the new cancer center at Luther Midelfort. I remain thankful that the close collaborations between my Mayo Clinic and Luther Midelfort medical teams have given me many days of living, with a hope of many more. And we are all rooting that I shall be in the audience at the University of Chicago in June 2012 to see my youngest daughter graduate. My “Dianne’s Future Amazing Life Adventures List,” that I started while awaiting surgery at Mayo Clinic, has served me well since my cancer diagnosis. I’m hard at work adding new dreams for 2011.

My most important life goal right now is to create fun, lasting memories with my two delightful young adult daughters Emma and Sally O’Brien. Together, we crossed out one of my “Amazing Life Adventures” list dreams by enjoying the Wizarding World of Harry Potter in Orlando, Fla., this past September. To keep me hopeful that my continuing chemotherapy treatments will garner me many more months of quality living, we are scheming to tour southern England in late August on the trail of writer Agatha Christie, whom we all relish. Hope is a very powerful thing. It could happen!

In the video below, Dianne shares some of her story.

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Emma’s gift

November 11, 2010

When offered a choice between a trip to the doctor or a shopping day at the American Girl Store, eight-year-old Emma chose the doctor — hands down. An extraordinary choice, but then, Emma is an extraordinary girl.

Emma and Dr. Svetomir Markovic

This wasn’t to be a typical doctor’s visit. Emma came to Mayo Clinic to surprise Svetomir Markovic, M.D., Ph.D., professor of medicine, oncology, and Charles F. Mathy Professor in Melanoma. In her hand she held a check for more than $1,000. Money she’d raised for Mayo Clinic melanoma research in his honor.

Emma’s reason for the gift is simple. “It’s because he takes good care of people,” she says. She knows first hand the care of Dr. Markovic. He was her father’s oncologist. Sadly, Emma’s father, David, lost his battle to melanoma on August 28, 2009.

So this year, as Emma’s family of Langdon, North Dakota was preparing to participate in their local American Cancer Society’s 2010 Relay for Life, it was Emma’s job to design t-shirts for their team — Team Scrappy. Emma’s mother explains that her husband, David earned the nickname “Scrappy” in high school when he wrestled.

“He was a fighter,” she says, “And I watched how hard he fought melanoma, so it was an appropriate nickname for him and the perfect name for our team.”

Although Emma says that she never quite “got” the Scrappy team name, it really didn’t matter because it didn’t interfere with the t-shirt design: a red star for Dad, and #1, “because Dad was #1,” she smiles, and the word BELIEVE across the front.

As she designed the t-shirt, Emma got the idea of selling them to raise money for melanoma research at Mayo Clinic, “to help find some answers for people with melanoma,” she says.

Emma wrote a thank you letter that accompanied each t-shirt explaining the project and where she was donating the money. “I miss my daddy very much and think about him all the time,” she wrote. “All the money I raise is going to be given to the Mayo Clinic in honor of my daddy’s doctor, Dr. Markovic.”

Her initial goal was to raise $500, and she more than doubled it.

“This entire story brought tears to my eyes,” says Dr. Markovic. “This is a wonderful family who has had to deal with so much. Some months it seemed they spent more time in Rochester than at home. I’ve known them for a long time.”

“Our favorite topic, once we ‘dealt with cancer,’ was to talk about our children,” says Dr. Markovic. “Our children are of similar age and they always had good parenting tips for me, and so I was overwhelmed when I heard that little Emma had done such a wonderful thing and raised money to help me fix cancer. With help like that, how could we ever lose?”

Even at this young age Emma seems to grasp the importance of caring even if cure is not always possible. She’s honored the caring at Mayo through her gift. More importantly, she’s taken up the torch to support the care of people with the disease and its study. She never misses an opportunity to inform others about melanoma and the dangers of the sun. “Learn to wear a hat,” is one of her mantras.

Her enthusiasm is contagious and her salesmanship . . . well, let me put it this way, she dropped off a check for Dr. Markovic and picked up a t-shirt order from him with sleight of hand a magician would envy.

Having accomplished that, Emma and her cousin, Grace set off to summer camp. With a skip in her step and a smile on her face, she left Dr. Markovic saying she’d be back next year with double the proceedings of this year.

Emma’s story was written by Dianne M. Axen, communications consultant in the Department of Develoment, Mayo Clinic in Minnesota

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Running has Leah Running Ahead of Schedule

October 15, 2010

Leah’s story as told by her mom, Karen . . .

There is a lot that has gone into Leah’s journey and recovery from POTS. She suffered for several years before finally being diagnosed in February 2005 at the age of 13. At the initial diagnosis and over the years, we were optimistic that she would eventually outgrow the debilitating symptoms when she was in her early to mid twenties. However, at our last appointment with Dr. Philip Fischer in July 2010, at the age of 18, Leah was declared POTS free!

Leah and her horse

POTS not only affects the patient, but it also affects the entire family. Friends, like schools, often do not understand. A social life becomes nearly impossible; unless you have a wonderful older brother, like Ryan, who graciously lets you hang out with him and his friends, even if it means bringing little sister home early when her body begins to fail her.

Our family reinvented life, and we even added special pets that include a little dog and an amazing horse. Leah made positive connections with friends via the Internet. She had allergy testing to help her figure out what foods and other allergens to avoid. On good days, she might have her hair cut and styled. Basically anything that gave her the edge on feeling better physically and emotionally was incorporated. Leah drank lots of fluids, increased her salt intake, ate healthy foods, took vitamins and did the simple exercises prescribed, but still it wasn’t enough. She was tired of being the “sick girl” and living life totally around this debilitating illness.

Leah learned to listen to her body, and she figured out that she felt better when she exercised. She decided to make the best of every day, even if it was only for a few minutes a day. Out of boredom and sheer determination, she started walking on the treadmill. When she first started, she could barely walk ¼ of a mile. Slowly, over time, she built up her endurance and she started to run. Despite reading how exercise makes many people with POTS feel worse and how strenuous exercise should probably be avoided, Leah began to notice that exercise actually “bought” her extra time of feeling better. She began to seek out the treadmill so she could run when she began to feel her blood pressure fall. Later, after she began to build herself up and began to feel better, if we had plans to do something, she would run on the treadmill before we left in order to “buy” more time. Dr. Fischer gave her the go ahead to run – to run as far as she could.

In May 2009, after doing some research, I purchased CW-X conditioning tights that Leah wore even when she wasn’t running. The results were absolutely amazing. They actually seemed to push her over a hump and gave her the edge on feeling better. It was as if the conditioning tights were helping her brain figure out how to stabilize her blood pressure. Leah began to run more and even had a ten minute mile. Later that year, Dr. Fischer challenged Leah to an eight minute mile. Leah, who is only 5’, took the challenge and got it down to seven minutes! She was feeling fabulous! She began to lift weights and train with kettle bells. Now, instead of people telling her that she doesn’t “look sick,” she has people tell her that she’s lucky and that they wish they had her body! If only they knew!

In July 2010, at Leah’s last visit with Dr. Fischer at the Mayo Clinic, she was declared to be POTS free! She was POTS free because she had become a runner.

POTS is not completely understood, and she still has a few minor health issues to overcome. However, these issues are minor compared to her previous condition.

As of the fall of 2010, Leah is enrolled at a local college and is working part time. She is looking at different colleges and is exploring several career options where she can use her personal experience to help others.

Recovering from POTS will not happen overnight, and if your body is deconditioned, it will take longer. Exercise helps keep the blood from pooling in the limbs. It also keeps the blood pumping and flowing which keeps the blood pressure up. If you have POTS, listen to your body and use what few moments that you might have every day to at least walk for a few minutes. Gradually build yourself up to power walking or even running. This will help build and strengthen the leg muscles, which is quite beneficial. Recovery, especially early recovery, can become a real possibility.

We are grateful for Dr. Fischer’s guidance and patience as we asked many questions and for so many directions along the way. He encouraged Leah’s positive attitude and challenged her to push herself further. We know – Leah knows – that she is POTS free years ahead of schedule because she became a runner. In essence, she is truly running ahead of schedule!

Leah talks about her journey with POTS . . .

Leah’s mom . . .

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Teen Perseveres Surgeries to Straighten Legs

September 29, 2010

Last year, when Dr. Amy McIntosh watched me walk down the hall with my extremely bowed legs, it was obvious to her that I needed surgery. Without the surgery, my legs would be subject to joint and knee pain when I got older. It was my senior year in high school, and I was a cheerleader. Having surgery and being on crutches for months was the last thing on my mind. But I like to be active, and I have my whole life in front of me, so I prepared to have a double osteotomy.

Madisen

My name is Madisen Jennings, and it was my older sister who brought me to Mayo. We both have bowed legs (hypophosphatemic rickets) but she had been very sick and finally came to Mayo where she was diagnosed with overactive parathyroid glands. She had to have several of her parathyroid glands taken out. Because parathyroid disease (hyperparathyroidism) can result from the treatment of hypophosphatemic rickets, I got checked for it at Mayo, too.

As it turns out, my parathyroid glands weren’t functioning properly, either, but I didn’t have to have them taken out. I had been on medication previously, but Dr. Peter Tebben at Mayo was able to reduce the number of pills I took every day from 20 to nine.

Hypophosphatemic rickets causes the levels of phosphorus in the blood to be too low. Phosphorus, like calcium, is important in making bones strong. The low levels are what caused both of my legs to bow. So last year, when I was a senior, I had surgery on my left leg. The doctors took a wedge out of my thigh bone and put a plate and screws into my bone to take the curve out of my leg. The surgery took about eight hours. I spent six days in the hospital afterwards, some time in a wheelchair, then five to six months on crutches. After a month-and-a-half of physical therapy, I could finally walk again.

Then it was time to do my other leg. That surgery went great and both of my legs are now completely straight. Some scars are the only signs that the surgery happened. Going through those surgeries was tough but I’m really happy with the results. I can’t run or jump yet, but after a year, Dr. McIntosh says she will get me doing both activities.

My doctors at Mayo were great. They took really good care of me. Sometimes they called me just to see how I was doing, and they were very understanding.

Another great thing is I get to throw the ceremonial first pitch for the upcoming Twins game against Toronto on Oct 2. I’ve had eight years of softball, so I should be able to get the ball across the plate, I hope!

I’m really excited about my future. I just started college at Iowa State, and I hope to be a dietitian some day. Thank you Mayo for the great care, and I’ll see you on the ball field!

This story was submitted by Madisen Jennings, a patient at Mayo Clinic in Minnesota.

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Naomi Atrubin, American Heart Association Heart and Stroke Hero winner award

September 22, 2010

Naomi Atrubin of Rochester, Minnesota, is a two-time heart attack survivor. Not only is she a survivor, but she is also an active volunteer in the community, giving back to others through educating people she meets about heart disease.

One of Naomi’s volunteer interests is participating in Mayo Clinic’s One Voice patient/family advisory council for the Division of Cardiovascular Diseases. One Voice is dedicated to building on Mayo’s traditional value of the “needs of the patient come first.” This unique group of patients, family members and health care staff collaborate to develop improved processes and optimal outcomes for future patients.

Now, Naomi’s efforts at educating others will be recognized by the American Heart Association with the Heart and Stroke Hero Award at the annual gala in Minneapolis on October 16.

Read about Naomi’s heart health journey here:
I had my first heart attack on Christmas Eve 1992. Although I have been around cardiology and cardiologists most of my life, I was in denial at the time. I was a 62-year-old woman, and this couldn’t be happening to me. My second heart attack was in October 1997. Again, I found it very inconvenient and was fighting recognizing the symptoms.

In both episodes I had the classic symptoms of a heart attack (chest pain, nausea, vomiting, diarrhea and great weakness) and the family history too.

My family has a dreadful cardiac history which I guess is true of many cardiac families:
• My father, a cardiologist, died of a heart attack at age 51. He had “heart trouble” for seven years.
• My only brother, also a cardiologist, had a heart attack and suddenly died at the age of 50.
• My nephew (my brother’s son) had heart surgery at age 38.
• My sister had a heart attack at age 60 which she survived.

Naomi playing in a volleyball tournament at her high school reunion

I have participated in cardiac rehab twice, and I’m mostly
virtuous, following “healthy living” rules. I stay active, watch my diet and exercise often. I even got to play in a volleyball tournament at my high school all-school class reunion in Winnipeg. It was the 100th anniversary of the school.

I have been very active in the Rochester Coronary Club and in One Voice, and I am very active in “Women Heart” the advocacy group in Washington, DC. In 2005 I graduated from the “Women Heart” four day intensive training program, run conjointly by “Women Heart” and the Mayo Clinic, and I served a three year term on Mayo’s Institutional Review Board. I also was director of the “Heart Fund” race back in the late 1970s. I feel that by “giving back” through these activities, that I am thanking the Mayo Clinic for helping me survive my two heart attacks.

I joined the Coronary Club seven years before my first
heart attack because I was feeling so bad about my brother’s
heart attack and sudden death at age 50. I needed to do something. Kathy Zarling, who started the Coronary Club, was very supportive.

Naomi met Senator Franken while attending a training program with Women Heart in Washington, D.C.

There is still so much to be done to educate the public about
heart disease, and I want to be one of the educators. It can be done by giving talks but also in nontraditional ways, with friends at coffee shops and in other informal situations.

This story was submitted by Naomi Atrubin, a patient at Mayo Clinic in Minnesota. Deanna Constans, a communication specialist in the Division of Cardiovascular Diseases, also contributed.

To learn more about One Voice, please contact Carrie Sanvick, RN, Mayo Clinic One Voice Co-Chair (507-255-7074).

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The observations of a potential kidney donor

September 4, 2010

Pamela S. has come to Mayo Clinic as a potential kidney donor. While going through many tests to verify her eligibility to proceed with this admirable endeavor, she has quickly become amazed with Mayo Clinic. Watch this video to hear her observations.

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An appreciative patient

August 27, 2010

For Mary B., the eight hour drive to Mayo Clinic from her home in Indiana was a small price to pay for the care that she has received. After seeing many doctors in her home state and in Illinois, Mary says for the first time, she feels like she’s getting answers.

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