The following is the story of Lori Sklar, Founder of Jacob International, as told by her and completed by her Husband, Bill Sklar
I have a story to share with you so that together we can save a life. It is important to me to share this story so that it does not become your story or the story of future generations. I want to break the cycle of hereditary Breast and Ovarian Cancer.
I am a 48 year old woman who lives in South Florida and was always very proactive about my health. My father was a cardiologist and had always stressed the importance of preventive medicine. Due to the medical history of cancer in our family, I entrusted my care to the top radiologist and oncologist in the area. I saw my radiologist and oncologist several times a year because of the cystic nature of my breasts. Since I had fibrocystic breast disease, my radiologist performed my mammograms, pelvic ultrasounds and needle aspirations of any suspicious lumps. My radiologist decided that I needed an MRI of my breasts because they were so dense making it difficult to read my mammograms. The MRI was considered the gold standard of testing breasts. Over a period of several years I had MRIs at two hospitals in Florida ( Miami and Tampa) and a hospital in Philadelphia, Pa. In total I had six MRIs. Not one of my doctors advised me to seek genetic testing to determine if I had a mutation in my BRCA 1 or BRCA 2 gene. They knew of my family history of breast cancer and even had treated both of my maternal aunts – one who had been diagnosed with breast cancer and the other who chose to have a prophylactic mastectomy.
I had an MRI at a teaching hospital in Philadelphia, Pa. on July 3, 2003 which was read to be “negative” for cancer. I was diagnosed with Stage I breast cancer on October 13, 2003.
After I was diagnosed with breast cancer, two different oncologists recommended that I pursue genetic testing. Ironically, both my original radiologist and oncologist still did not feel it was necessary to have genetic testing even after my diagnosis of cancer. I told my original oncologist that I had two sisters in the waiting room and that it did matter. It turned out that it mattered more to me than them. I tested positive for BRCA 1 and they tested negative. This knowledge was important because it would impact my treatment.
I wish my radiologist and oncologist had advised me to have genetic testing.
Women who inherit a mutation in their BRCA1 or BRCA2 gene have a greatly increased risk of developing breast and ovarian cancer. One in 500 women inherits a BRCA gene mutation.
So I endured a double mastectomy, a prophylactic full hysterectomy and many months of dose dense chemo-therapy. After my mastectomy, I saw a physical therapist who was instrumental in my physical rehabilitation and a psychologist, a breast cancer survivor, who helped me tremendously with my anger and fears.
I gained my strength through my faith, the love of my awesome husband and my incredible family. I am very involved in my religious institution and have continued to do my community service work which is my true passion.
I wish the story ended here. However, it continues with my diagnosis of leukemia on April 12, 2005. The leukemia was the result of the chemotherapy which I had after my mastectomy. There is one-half of one percent (.005 %) chance of getting leukemia from the type of chemotherapy which was prescribed. I was in the hospital for thirty one (31) days and once again, my faith, the love of my husband and family, and our congregational family helped me through the ordeal.
To obtain a cure, I needed a bone marrow (stem cell) transplant and in July, 2005 went to the Seattle Cancer Care Alliance/Fred Hutchinson Research Institute in Seattle, WA for treatment. They have an international reputation led by Nobel Laureates, among whom is the pioneer of bone marrow transplantation. Upon arrival at the Hutch, I severely relapsed, my leukemia changed from AML to ALL and several courses of intense chemotherapy followed. With chemotherapy there are often severe unintended consequences including the inability to fight infection. In my case, these consequences included severe Aspergillosis Pneumonia, a rapid growth mold infection in my lungs which is often fatal, serial transfusions of white blood cells (granulocytes), red blood cell transfusions and platelet transfusions (necessary for blood to coagulate). The treatment for Aspergillosis Pneumonia included a recently approved FDA drug, Micafugin, combined with other anti-fungal agents.
Prior to transplant and a further chemotherapy treatment, 40 percent of my bone marrow consisted of leukemia cells and I was given a 20 % chance of success of a transplant.
These complications and a further relapse persisted for more than four months before I was ready to undergo “conditioning” prior to the transplant. Conditioning included six exposures of lethal doses of total body irradiation and a high dose of further chemotherapy, all designed to kill my diseased bone marrow. Then I received a transplant of stem cells from a thirty year old male after which I developed severe mucositis (deterioration) of the lining of the mouth, lips and upper gastrointestinal tract.
Thanks to God’s blessings and strong, healthy donor cells, I strongly engrafted but then faced both acute and chronic graft versus host disease, a double edged sword which attacked my gut but beneficially allowed the donor’s graft to destroy residual leukemia cells. Throughout all of this, I was required to undergo bone marrow aspirations/biopsies and six spinal taps (lumbar punctures).
Lori’s story did not end here. She returned home from her transplant and treatment in February 2006 and underwent intense physical therapy to restore her strength and mobility. For almost six months, Lori improved and was well enough to attend her nephew’s graduation from college in May 2006. In early August 2006, Lori relapsed and again was hospitalized for 30 days of chemotherapy treatment and recovery. Follow–up chemotherapy led to acute liver failure, pancreatitis, and other severe complications requiring several hospitalizations. On December 30, 2006 Lori passed away while valiantly continuing to fight her disease.
Throughout this ordeal, we continued to do God’s work. Lori, her sisters and husband developed two web sites – www.jacobintl.org and www.reachglobal.org, brochures and marketed information to various groups to educate women on the benefits of genetic testing for the BRCA 1 or BRCA 2 gene mutation to stop breast and ovarian cancer.
Lori’s sisters assembled an army of people she did not know who prayed for her. These people included individuals of all faiths around the nation. Lori and her family are forever grateful for their prayers and believe in the power of prayer.
What Lori and I have described is the medical journey but does not begin to describe the real journey of faith, love and God’s miracles. Lori was sustained in her journey by God’s love, her persistent and total faith in God and the unconditional love of her family, religious congregation, friends of many faiths and many other people whom she never met or spoke with. These individuals, through the power of prayer brought her through this journey.
All of these are God’s miracles, for which Lori and I am eternally grateful. The power of prayer and faith in God is an awesome healer. Lori’s story, as arduous and difficult as it sounds is a victory of spirit, faith and God’s love.
Just imagine if Lori’s doctor, the community, our family or a friend had educated us on the benefits of genetic testing. Lori could have had a prophylactic mastectomy and hysterectomy, avoided chemotherapy and would be alive today. But then again, perhaps this was Lori’s path and purpose to EDUCATE you so that this is not your story and not the story of any future generations. We will break the cycle of hereditary breast and ovarian cancer.
We hope that by sharing Lori’s story that we can make a difference in your life and those you love.
Wishing you all of God's blessings. May we, as a Sisterhood of Women, go from strength to greater strength!!!!
Don't let my real story become your story. Break the cycle of hereditary breast and ovarian cancer--- Get tested today!
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