I am grateful for the amount of time my mother Julia Barchitta was given in this life when she started to take Sutent after being re-diagnosed with metastatic Kidney Cancer in 2004.   She had an amazing response and she was able to enjoy her life to the fullest on this drug.  She was able to continue her job at Wagner College in Staten Island as an Academic Dean. She was able to see her grandchildren grow. She was able to travel and to enjoy life. Sutent had unlocked those possibilities.

Hers is just one of the thousands of stories of individuals and families affected by cancer in all its many forms. As a nurse, she had cared for many patients and families struggling with the diagnosis and treatment of this dreaded disease. My mother’s previous role at the College was Chairperson of the Nursing Department.  As a nurse educator, she prepared future nurses to be caretakers and to assist in maximizing quality of life and dignity in death.

She also had first hand knowledge of the devastation of her diagnosis. Her father died of colon cancer, her mother died of lung cancer and her sister is a breast cancer survivor. In January of 2003 she became a cancer widow at the death of her beloved husband Roy – my father- at age 61 from lung cancer; a healthy, active, non-smoker who lifted weights, played full court basketball every week and was the picture of health. He survived only four months from the initial diagnosis.

She herself was first diagnosed in 1989 with colon cancer at the age of 45. Our uncle had died of colon cancer at 52, her father was dying of colon cancer and a dear friend died of colon cancer. For some unknown reason, without any signs and symptoms, my mother decided she should be tested.  Julia’s gastroenterologist removed three polyps that looked good, but the biopsy showed two of them to be adenocarcinoma. She had a colon resection which showed no other signs of cancer. She was cured! No chemotherapy and routine colonoscopies every year. Mom was a cancer survivor – she had her cancer – 16 years ago. We thought that was it!

But, that was not the case. In June of 2002, she developed a bladder infection which she treated with Bactrim. It didn’t seem to help and there was some hematuria. She decided to go to the doctor to get a stronger prescription. Since she had some sensitivity in the left flank, he suggested a sonogram. This started her “medical emergency.”  Mom received a call from her doctor stating she had a large mass on her left kidney, 11 cm, and she needed a CAT scan. The CAT scan confirmed the possibility of renal cell carcinoma and she contacted a surgeon at NYU – who performed a radical nephrectomy and adrenalectomy in July. She was told it was encapsulated and there was nothing to worry about.  We were thrilled.

Mom’s surgical recovery was uneventful and she reassured my Dad, me and my two brothers, family and friends that she would be all right. In September of 2002 my father was diagnosed with lung cancer. The anxiety caused her to seek medical advice and further CAT scans showed several nodules in her lung suspicious of metastasis from the renal cell carcinoma. Through a family friend being treated for kidney cancer at the Moffitt Center in Tampa, Florida she got the name of a kidney oncologist in New York and was directed to Dr. Motzer at Sloan Kettering and made an appointment for the end of January 2003. Her husband, our father, died the week before her appointment.

Dr. Motzer recommended a lung biopsy for a definitive diagnosis so a wedge resection in March 2003 confirmed the diagnosis. Since the nodules were extremely small, Dr. Motzer suggested we just monitor them which was fine with us. She did all she could to maintain her health. We were so devastated at losing our father – and although she would have been content to die, she couldn’t do that to her children – she had to try and fight this cancer.

She tried a holistic approach: she went on a vegetarian diet, she took every supplement you could think of including Laetrile from Mexico and the juice of the Aloe Vera plant from Florida. In June she spent two weeks at a Healing Spa in Florida – raw vegetables, wheat grass by mouth and by enema, colon cleansing, massage, meditation. While she was there she was getting weaker and short of breath and she was told this was caused by detoxifying the body. When she couldn’t stand up and walk any longer they sent her for a CAT scan which showed her lung had collapsed due to a large pleural effusion caused by the cancer. This complication filled her with anxiety at the thought that the cancer was spreading so rapidly and all of her efforts to build her immune system had failed. She just wanted to get home to her family and get some treatment.

Against medical advice Mom flew home from Florida and went to Sloan Kettering where chest tubes were inserted to expand her lung and a pleuradesis was performed. She was very weak and the doctor gave her a poor prognosis. She didn’t want to get out of bed in the morning. There was no reason to get up. She coughed a lot which caused chest pain and deep breathing was painful. A friend suggested she see a pain management doctor who prescribed oxycodone prn and an antidepressant – Zoloft. Within a few weeks she was feeling better emotionally and physically and was placed on a trial of Pegalated Interferon.

This caused flu like symptoms – chills, weakness, and low grade fevers. But, it started to work and within a few months she was in remission – she worked throughout this treatment, but sometimes she would get so tired she would lie on the floor of her office to nap. Suddenly after ten months of treatment the cancer returned and there were nodules in the lungs, lymph nodes and one on her ribs. She was devastated by this recurrence. Mom had been so optimistic and she didn’t want to give up hope. She couldn’t tell her children until she spoke with Dr. Motzer to see if there was anything else he could recommend.

Julia was offered another experimental trial – Sutent – what choice did she have – sure she’ll try it. She started on Sutent in July 2004, and after 3 or 4 cycles she showed no evidence of disease! I’ll never forget Dr. Motzer walking in and saying to her, “You’re the first of my patients who’s had a complete response.” Wow! What a feeling! I jumped up and just hugged and kissed her – we were both so happy, as was Dr. Motzer. Although we could never say she was cured – every CAT scan that showed no evidence of disease gave us a few more months of security.  The side effects were not insignificant, but she had been able to work throughout. The main problem she would have is severe blisters on her feet – making it painful and difficult to walk about half of her cycle. She would also experience blisters and bleeding on her gums and flatulence and occasional diarrhea.

Living with Sutent had become a part of her life. Twenty-eight days of her cycle she would take her pills every morning along with her Synthroid and Zoloft. The fact that these side effects were not continuous helped in tolerating the treatment. As you age, you expect some discomforts and aches and pains. She looked upon these side effects as an inconvenience of aging and took her medication as she would for a chronic illness.

She was also fortunate to have the support of family and friends and her colleagues at work, Wagner College.  She was the Dean of Experiential Learning and would often have to travel to different conferences and speaking engagements.  The President of the College, would tell her to go home if she look tired. She felt sorry for individuals who did not receive this kind consideration. She also had a lot of faith and believed in the power of prayer.

She loved to travel and plan her vacations around her treatment schedule when possible. Since her diagnosis she went to Spain, Scotland, Germany, Austria, Prague, Gibralter, Alaska, Mexico, San Diego, San Francisco, Oregon, Florida, the Grand Canyon, Nashville, Vegas, The Caribbean, and many many other places!  She wasn’t going to let cancer slow her down.  And most of all, she continued to enjoy her family and friends – her three children, Anthony, Lucille and John and two grandsons Justin and Roy who were the loves of her life.

All of this would not be possible without the dedication, hard work and persistence of the medical community.

Clearly all of us were devastated when the cancer returned in July of 2007. This time her body was clear, but her brain had presented a few lesions.  We first tried two rounds of stereotactic/gamma knife radiation.  All seemed to go well until April of 2008.  Side effects had arisen from the radiation (brain swelling that caused lack of speech) and new lesions were popping up in the brain.  She had neuro surgery and follow up whole brain radiation.  Even despite her radiation and surgeries she still managed to fly to Octoberfest in Munich to dance and laugh with the crazy party goers! All was well until Thanksgiving 2008.  We went to Disney as a family and although she was able to walk the entire park – she was getting very quiet.  At that point my mother’s brain was no longer healthy.  Steroids were the only thing that helped the brain swelling but they seemed to knock out her ability to walk.  This was incredibly disheartening as she was such an active woman.  On January 21st – six years to the day my father died – we checked her back into Sloan Kettering.  By February 11th we made the decision to bring my beautiful mother home.  Hospice was set up in the living room and she was surrounded by her family and friends.  We camped around her until she passed on February 22nd 2009.  My mother was 65 years old.

We were all blessed to have her as long as we did.  I was told in June of 2003 that she had mere weeks to live.  Miracles do happen.

-Lucille Barchitta