It was a stunner when the ER doctor reported to my husband Joe and me that all my bloodlines (red, white and platelets) were dangerously low and I would need to be admitted to the hospital for a blood transfusion.
Less than 6 days before, Joe and I were enjoying a mini get-away celebrating our 44th anniversary at a resort in Florida, visiting with his 95-year-old uncle and taking him to his favorite restaurants as we rode around marveling at the majestic Atlantic Ocean in our rented red mustang convertible.
When we returned home, I resumed my daily treadmill regiment with a brisk walk of 25 minutes at 4.6mph. To my amazement, I tired quickly, laid on the ground to catch my breath and resumed with the walk only to last 4 minutes before laying down again. I told Joe that maybe I should start drinking beet juice as I was very tired and could use an energy boost. The next few days my symptoms accelerated as I could not stand or walk for more than 1 minute without sitting down. I thought that, while not much of a green thumb gardener, maybe I had Lyme disease or picked up a virus on the trip to Florida – although Joe was fine.
I finally got admitted to my hospital room at 11 pm. It took a few hours to type and crossmatch my blood before the two-bags of red blood transfusions began. I never slept. My roommate’s snoring roared like thunder and her individual TV remote was on the loudest volume. The mask and earplugs that the nurse offered did nothing. I kept wishing for morning as I was dreaming of a hearty breakfast. At 6 am, as the transfusions were almost completed, I received disappointing news – I needed to fast as I had a full day of tests, including a platelet infusion and ultrasound of my organs so there would be no breakfast for me – and to my dismay, I would miss lunch too.
So began a series of young doctors standing by my bedside with Dr. Chang, the hematologist on call, asking me the same questions in 6 different ways. Magically, they would reappear every few hours. Dr. Chang also ordered a bone marrow biopsy, given my history of advanced breast cancer and corresponding aggressive treatments, which would determine how my bone marrow was working. I was concerned when I heard ‘bone marrow’ as I immediately thought of Robin Robert’s diagnosis in 2012, related to her treatment for breast cancer five years earlier.
I made it clear to my health care team that I was leaving the hospital after the biopsy –hopefully with their permission or escaping – it was their call. Finally, at 4 pm, the bone marrow biopsy procedure began. It took a few hours to get back to my room. Greeting me on my hospital tray was one large chicken cutlet sandwich on a hard roll from my hubby. It was the best chicken sandwich I ever had! I was finally discharged at 7:30 pm, so no need to plan my escape. Now the torture of waiting for the results began - It took 21 days to get the diagnosis as the first bone marrow biopsy was inconclusive.
On September 6, 2018, my oncologist confirmed my diagnosis of secondary Myelodysplastic Syndrome (MDS) – cancer of the bone marrow related to my aggressive treatment for breast cancer 14 years ago. It took me a week to learn how to pronounce the syndrome and I am still not confident in its spelling. While rare, those who have been treated with chemotherapy and radiation treatments have a higher risk of developing MDS. In the United States, the number of therapy-related MDS is rising as people now live longer after treatment for cancer. My diagnosis reinforces the underpinnings of our relentless advocacy, through our two nonprofits, Are You Dense, Inc. and Are You Dense Advocacy, Inc. for women with dense breast tissue to have access to an early diagnosis to reduce harms from aggressive treatments and improve survivor outcomes, an opportunity I never had.
Our faith remains strong despite this life-threatening diagnosis and I have my family, friends and the Are You Dense community to root me on. Joe and I are seeking treatment options to arrest the progression of the disease with the goal of having a successful bone marrow transplant down the road. I continue to get transfusions regularly.
My three siblings are being tested to determine if they might be a match as my bone marrow donor. There is a 25% chance of family members matching. When a match is not found from a family member, a national registry is used. To learn more about becoming a bone marrow donor, check out BeTheMatch.
Continue to follow us on social media as I will be updating my progress on Facebook, Twitter, and Instagram. I look to you for inspirational messages. I continue to count my blessings daily as I have much to be thankful for. No pity parties allowed. Please keep me in your prayers.Joe and I enjoying our 44th Anniversary Dinner. In six days, I would be hospitalized for an overnight blood transfusion.
After three months, many blood transfusions, trips to the emergency room, two weeks with a devastating fever at Dana-Farber in Boston, Nancy was very weak and very ill. Dana-Farber found a bone marrow donor and it began to look brighter, but with hope and great faith in Jesus, He decided to take her home. On November 15, 2018, Nancy passed away peacefully while I held her hand.
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Are You Dense, Inc. is a 501(c)(3) public charity. IRS Tax ID 26-3643216. All donations are tax-deductible as allowed by law.
Breast density is one of the strongest predictors of the failure of mammography screening to detect cancer.
Two-thirds of pre-menopausal women and 1/4 of post menopausal women have dense breast tissue.
Adding more sensitive tests to mammography significantly increase detection of invasive cancers that are small and node negative.
American College of Radiology describes women with "Dense Breast Tissue" as having a higher than average risk of Breast Cancer.
While a mammogram detects 98% of cancers in women with fatty breasts, it finds only 48% in women with the densest breasts.
A woman at average risk and a woman at high risk have an EQUAL chance of having their cancer masked by mammogram.
Women with dense breasts who had breast cancer have a four times higher risk of recurrence than women with less-dense breasts.
A substantial proportion of Breast Cancer can be attributed to high breast density alone.
Cancer turns up five times more often in women with extremely dense breasts than those with the most fatty tissue.
There are too many women who are unaware of their breast density, believe their “Happy Gram” when it reports no significant findings and are at risk of receiving a later stage cancer diagnosis.