Breast Cancer Awareness Month 15th Annual Pink Party – Sharon Mouss, Survivor

Original date: October 25, 2017

INTRODUCTION:
Sharon Fife Mouss is 21/32 Creek, Wvtkvlke, Tukabatche Tribal Town, and a member of Thewarle Baptist Church. She lives in Henryetta with her husband Edward. They have two daughters, Lea and Sharry; one son, Eddie; and a grandson, Damon. Sharon taught composition and technical writing for 25 years at OSU Institute of Technology and retired in 2006. She has been a member of the Board of Regents at the College of the Muscogee Nation since 2004 and serves as Secretary of the Board. In December 2015, she was installed as a Women’s Leader at Thewarle Indian Baptist Chuch.

Sharon was diagnosed with breast cancer toward the end of 2013. Today she is cancer free, blessed, thankful, humble, and happy to be here with YOU at the 15the Annual Pink Party—to CELEBRATE LIFE.

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By Sharon Mouss

Thank you and good afternoon. Congratulations Survivors! We all have something to celebrate! Life! We have all been through a common experience, but not necessarily the same experience—and these experiences have extended to our families and friends. When I was nearing the end of my chemotherapy treatments, during one of my appointments, my chemotherapy oncologist, Dr. Janjua, said: “ You are cancer free.”

I replied, “I have been thinking—I do not have cancer, but I have a story.” Here is what happened to me.

In late September 2013, I was doing paper work at my dining room table when I reached across with my right hand to get a pen —and OUCH—What was that!!?? A shocking pain on the right side of my right breast. I felt the area with my left hand. WHAT WAS THAT?? There was a lump the size of the end of my little finger and it was sore and felt inflamed. I had done regular breast exams and expected that if anything came about, it would be small, like a BB or pea. Surely, I haven’t been missing this. It’s probably one of those fibrocystic things I had heard about– caused from too much caffeine, I thought. I quit coffee for three days, but it was the same, so on October 1, I went to the Okmulgee Clinic.

At the glass-enclosed reception area, I asked for an appointment with Terry Garner, the Nurse Practitioner in the Women’s Clinic. The receptionist named a date several weeks away for an appointment. “Can I have one earlier,” I asked.

“What do you need to see her for?” she asked.

“I found a lump in my breast.”

“Wait right there,” she said, and she went to the back offices. Very soon, a nurse came after me and said, “Come with me.” And she put me in an exam room. Next, Terry Garner came in, performed an exam and said, “Possibly not cancer, but felt irregular” and that I should get a mammogram which was scheduled for the next day at Okemah. The results were not definitive, so another mammogram was scheduled.

On October 11, I received a letter from Radiology that said, “Your recent mammography examination showed a finding that requires additional imaging studies for a complete evaluation, such as ultrasound…[etc. etc.]” On Oct. 18, an ultrasound was done. Because of its results, Terry recommended that I see a breast cancer specialist and gave me two names to choose from. I made an appointment with Dr. Chad Johnson at Warren Clinic, and then started paperwork with Contract Health.

On the first visit, November 25, I had to take the last three years of mammograms; Dr. Johnson talked to my husband Ed and me about my condition and what may come next—during this whole experience, Ed gave me strength, help, and support. Dr. Johnson performed an in-office biopsy and said he would call me with the results in a few days. However, he called me that very evening around 8 o’clock. It was cancer.

We made another appointment for the next day. Dr. Johnson explained that I had Invasive Ductal Carcinoma, Grade 3, with triple negative receptors—the receptors must be positive and must have the ability for certain medicines to attach to antennae to block the cancer’s growth; mine were negative. Therefore, I could not take the hormonal or endocrine treatment. He said I must have surgery. He explained the options of a lumpectomy, a single and a double mastectomy. He drew diagrams with his explanations that looked like complicated chemistry formulas. What did I want to do?

“Let’s get this done! I am ready.” I elected to have a lumpectomy rather than a mastectomy. With the triple negative reading, I would take chemotherapy and radiation therapy as well. He said, “We can do the surgery this Friday (in 4 days), or on December 10 (in a week and a half!)”

“Wait! Wait,” I said: “My niece, son, and daughter are all graduating from OSUIT on December 13. I am having Christmas at my house for my huge family on Christmas Eve! I haven’t even told my kids about this yet! Can’t I tell them after Christmas?”

“You need to tell them immediately. We can have the surgery on December 3,.” Dr. Johnson said.

What a whirlwind this had all been. It was time to stop and think.

No one in my family had had breast cancer before me. I use the term “no one” rather than “none of the women” because each year, a small number of men are diagnosed with breast cancer also. However, a little over a year previously, my brother Bill Fife, a Vietnam Veteran, was diagnosed with CLL, Chronic Lymphocytic Leukemia in his bone marrow. Our family was very worried and scared. We didn’t know what to expect. We all tried to help—driving him to his treatments and trying to take care of him. But he told us we didn’t have to bother, he was Ok. He said the chemo wasn’t so bad, but he didn’t want to lose his hair. His son, Jeff, and daughter, Cinda, stayed closest to him during this time.

The doctor asked me if I had any concerns or questions and I told him, “No. My brother Bill has experienced leukemia. He didn’t act sick or appear to feel bad. I am going to be like him.” This seemed to surprise Dr. Johnson.

I had various doctors’ appointments after that, preparing for surgery, meeting the radiation oncologist, Dr. Stephen Sack, and the chemotherapy oncologist, Dr. Muhammud Janjua. Dr. Janjua explained that my cancer, Invasive Ductal Carcinoma with negative receptors, was a very fast-moving cancer. He said that many breast cancers grow slowly. He said that if breast cancer types were compared to cars, some were like little KIAs moving down the road, but mine was like a Maserati speeding along. He also told me that I may or may not lose my hair. He said that chemotherapy is what makes you lose your hair because it looks for fast acting cells (like cancer cells) growing in the body. Because hair follicles are fast growing, the chemicals detect the action and kill the cells in the hair follicles—and the hair falls out. I didn’t know that. I learned a lot during this whirlwind experience, but some things just did not register.

In the meantime, Ed and I told our kids about my condition and the upcoming medical schedule. We had a nice Thanksgiving, attended graduation at Tech and celebrated the new degrees, shopped for Christmas as usual, and had a big Christmas Eve at our house. And most importantly, I was on many prayer lists throughout the Creek Nation. My church, Thewarle Indian Baptist Church, was praying for me and when members visited other churches, they requested prayers for me, my family, my doctors and nurses, and all those concerned. I was blessed because of it. And today, I see the Womens Leaders from Thewarle here, still supporting me. And members and Leaders from other churches have given me kind words today. Mvto.

Then on New Years Eve, I had surgery. Dr. Johnson announced when I woke up that he had removed all the cancer and one lymph node which had been sent to the lab to make sure it was clear. The experience had been calm and encouraging. All the staff had been cheerful and helpful. Warm blankets were provided in pre-and post op rooms and in the OR. How nice was that?

I was cancer free! Cancer free! OK. I was ready for my next step. I thought I would take chemo or radiation. I had misunderstood. I would take both. But Why?? Dr. Johnson said that because of the triple negative receptors and the lumpectomy (instead of a mastectomy), I would have to have both treatments to give me about a 92% chance of not getting a recurrence of the cancer.

A couple of weeks after my surgery, Dr. Johnson implanted a power port device in my left shoulder area which they would use to give medicines or fluid or withdraw blood samples. A special needle, called a Huber needle was used in the port. This was very convenient for both patient and doctors. Five weeks after my surgery I started my chemo treatments. I believe I started on a Tuesday and Wednesday during the middle of the February 2014 and then for labs on Thursday the following week. I skipped a week and then the routine started again. This went on for 4 months.

During February, everything seemed ok. I felt ok. I still had my hair. This was good. Bill didn’t lose his hair, so perhaps I wouldn’t either. In March, I still felt good, but I noticed more hair in my brush. Well, I was still hoping for the best. I had always been known as the “lady with the big hair.” Actually, I still have big hair—I grew up in the 60s—what can I say?? I was also beginning to lose my appetite. Later that month, I noticed that if I gave my hair a little tug, it would just come out. So, I bought a wig.

By the end of March, everything tasted like metal and I had lost a lot of weight. My clothes were baggy. One evening at church, my sister Sandy said, “Your slip is showing.” I said, “Where, in the back?” She said, “No, around your waist—your waistband is on your hips.” Ha. That was kind of funny. And, I was bald. And, being weak, I couldn’t walk in a straight line unless I was holding on to someone or something. I even had to stop and rest a couple of times when I went to get the mail. But I was cancer free!

At the chemo treatment center, everyone was so nice and helpful. A free valet service was available right at the door. Everyone was very cheerful and upbeat. Volunteers made caps to cover your baldness and to keep your head warm. They were free and you could just take your pick. The nurses served lunch or a snack. If someone was with you, they got a snack too. I also visited a therapist who educated me about lymphedema and how to prevent it. The Tulsa Chapter of the American Cancer Society even offered free wigs and other amenities that cancer patients may need.

March 2014 was an important time in the growth of our tribal college. The Higher Learning Commission was conducting an on-site visit regarding our accreditation on March 9-12. I was absent during the 11th because I had a chemo treatment on that day. The Chemotherapy Oncologist, Dr. Janjua, was and is always very interested in the activities and growth of the College of the Muscogee Nation and even took a swing around University Loop to see it one weekend.

By that time, chemo was about to get the best of me. Then I became severely dehydrated, a condition called hydropenia, and also got foot, hand, and mouth disease. However, I was never nauseous. On April 8 my son Eddie and my husband took me to the Henryetta Hospital ER. They sent us on to Tulsa and I was admitted to St. Francis so weak, I had to be helped. I stayed for a week being rehydrated and also given antibiotics. I was sicker than I had ever been, but I kept reminding myself: I am cancer free!

While I was undergoing chemo treatment, my family helped me so much. As I said before, my son Eddie had just graduated from Tech with an IT degree in Assurance and Forensics. Instead of seeking employment elsewhere, he volunteered at a local tribal town to do a project as a systems analyst. My daughters each came down from the city to drive me to appointments. To raise money for cancer research, they joined with nieces to form a team for the Susan G. Komen Race for the Cure in Oklahoma City. My sister Sandy helped me the most with driving. My sister Phyllis and niece Shelley came to visit me in the hospital and brought scarves and sox. Shelley showed me how the Cherokees make turbans and I used that technique a lot. I also learned to tie a scarf on my head in a similar way that my grandmother used to wear. In the meantime, I kept myself occupied with my flower beds and regular activities.

After chemo, radiation treatments were a breeze. I started on May 27 and had to go each week day for 33 days. During this time, I saw patients who were so sick and suffering, waiting for treatment on gurneys. I was so blessed, I was undergoing treatment, but I was cancer free. I didn’t get radiation burn or feel tired. I told my sister that I was going to write a book titled, “How to Go Broke in 33 Days” because every time my radiation treatment was over, I went shopping—although I didn’t always buy something.

It has been four years since I was diagnosed. Nowadays, I go to the oncologists every six months.

And that is my story.

What an experience it all was. Kind of worrisome but very interesting.

I trusted the medical professionals who cared for me, and I did all they told me to do so I could get well. Fortunately, I am retired and my children are independent, so I could totally concentrate on my health. Nevertheless, I realize that others may have responsibilities or limitations that can make this experience very hectic.

I used my brother Bill as a role model for a solid attitude, and it helped me all the way through. However, as I lay sick at St. Francis, I suspected that he had left out a few details.

I asked Bill what his thoughts were about breast cancer awareness. He said that it is important for women to have annual mammograms after 40, but diet and exercise are very important factors. They create a situation with the individual for –if they do have cancer—they will be strong and healthy enough to withstand and recover from surgeries and treatments.

He also said to maintain a good attitude. It is important not to spread ill will among others. Have faith that you will get well.

Dr. Johnson’s nurse, Lisa, says, “If you go in victorious, you come out victorious; if you go in defeated, you may come out defeated.”

I also read that “drugs may or may not be necessary in the treatment of breast cancer, but belief in your own recovery always is.”

Plenty of sleep helps fight cancer.

It helps to look over again some of the materials that the doctors gave you during your treatment. You may pick up some new information. For instance, the importance of Vitamin D. It makes your bones, heart, and other muscles strong and healthy, and it may help to prevent diseases, including cancer.

It may be inappropriate to say that this experience had some perks, but get this:
During my bout with chemo, I lost 35 lbs. Instant diet! As a result, along with the weight loss, I no longer had symptoms of diabetes and no longer required Metformin.

At my age, I was considering going grey but hated to go through the transition with grey roots and black locks. I also wanted short hair, but couldn’t decide on that. When my hair fell out, it solved both problems, and I like my new do.

My faith was increased tremendously. The power of prayer is obvious. God loves us. I thank Him often and acknowledge my blessing of good health. I believe that even though bad things may happen to us from time to time, we receive so many blessings that we should be joyful in our countenance.

To end on a very, very important note, I want to remind you ladies to keep doing your self-exams and getting mammograms. I want to acknowledge and thank the Muscogee Nation Division of Health. My experience with Terry Garner and her staff in Women’s Health and with the Contract Health staff was excellent. The Radiology and the Insurance Departments also. Everything was coordinated in a timely fashion and on a quick schedule. Everyone was friendly, helpful, and encouraging. There was not one glitch in my journey toward becoming a breast cancer survivor. I want to thank the Creek Nation’s health care professionals who help us to call ourselves Survivors. I want to thank the Nation for this party and all of you for your time and attention! Mvto!

In closing, I leave you with my favorite scripture from Numbers 6: 24-26:

The Lord bless thee and keep thee:
The Lord make his face shine upon thee and be gracious unto thee;
The Lord lift up his countenance upon thee and give thee peace.

God bless you all.
Mvto for your time and attention!