Wednesday, June 2, 2010

The beginning of the journey

Four years ago this week my mother went to have her blood drawn for her BRCA test. To be honest, we wanted the test done because she was so young at the age of her breast cancer diagnosis but we did not really expect a positive result. I guess we were looking for reassurance that her cancer was not something that would put me at risk. Or at least that is what I was looking for at the time.

My parents live in a beautiful resort community on Lake of the Ozarks and the nearest major cancer center is 90 miles away.  This is where my mother went for her genetic testing.  She had her blood drawn and made an appointment for mid-July to receive her results. As this time approached, we spoke by phone. Mom said how she wished I could be there with her when she received the test results and I agreed. Mom and I are close and I really did want to be there with her for this news. But I live in California and Mom is in Missouri. I was planning to take my kids to see their grandparents a few weeks later and an additional trip was just not practical.

One Sunday morning a few days before Mom was slated to learn her results the phone rang. My husband had just left for the gym and I was headed to the shower. When I picked up the phone all I heard were my mother's sobs; she was unable to speak. My father has had multiple heart surgeries and my mind raced to a horrible conclusion: something had happened to my father. My conclusion was wrong but the reality was equally horrible, my brother had been admitted to the hospital that morning and was not expected to make it to the evening.

"I'm on my way," I said.

I called the gym and had my husband paged; then called someone to help with the kids for the next several days; then booked the first flight from Los Angeles to Kansas City. Four hours later I was packed and on an airplane to Missouri. Fortunately, by the time I landed my brother was stable and his prognosis much improved.

I spend the next few days doing the vigil outside the ICU with my parents. As my brother improved, my father deteriorated. The first day or so we blamed his discomfort on stress but by the third day it was clear that despite his objections, he needed to go to the doctor. The day my brother was released from the ICU we convinced him to go. His doctor sent him immediately to the ER for tests because he had had a heart procedure only a few weeks before. A battery of tests revealed that his heart was fine. But his pain was unrelenting and the search for the cause continued.  By the end of the day, the doctors suspected that the problem was his gall bladder, although further tests would be conducted to confirm the next day. The next day, however, was the day my mother was due to make the long drive to the cancer center to receive her BRCA test results.

Mom and I sat in the hallway of the local hospital while my father was having a CAT scan of his abdomen.

"I wish you could go with me," she said.

"I wish I could be there, but someone needs to be here to stay with Dad," I said. By that time my father's pain level was so high that he could barely speak and one of us had to make sure the nursing staff brought him pain medication regularly. Leaving him alone to go with my mother was not an option. And my brother was in a different hospital more than an hour away.

She left before my father returned from his CAT scan and I sat alone in the brightly lit hallway of the hospital feeling guilty for not going with her. She should not have to hear this news alone.

By this point, although we did not really expect a positive BRCA test result, we had vocalized the fact that two other things had gone wrong that week and assuming the old wives tale was correct about bad things happening in sets of three, the news could well be bad. The analysis was not particularly logical, but we were feeling rather downtrodden at the time.

Mom promised to call me immediately after her appointment, then she was going to the other hospital to see my brother before returning home. I promised to call her as soon as we had the results of my father's tests. I called her before she reached her appointment to tell her Dad had multiple large gallstones but the doctors had said they could not operate because Dad was still on blood thinners from his most recent heart operation. The doctors would come up with a plan of action and talk with us later in the evening.

Two hours later my cell phone rang.

"Hello, Mom?"

"The test was positive for BRCA2."

Mom sounded shaken and I felt terrible. She should not have had to hear this news alone.

"I'm so sorry Mom."

"I can't think about this now," she said. "I am going to see your brother and I will call you when I am on the way home."

Later that night, we sat in Mom's living room and talked for hours. We had so many things to research and, quite frankly, the BRCA mutation in our family was the least immediate of the three. It has turned out, however, to be the most long lasting of the medical crises of July 2006. My father and my brother have both had full recoveries. Mom is doing well, although she has endured multiple surgeries to try to preempt any future cancer diagnosis. As for me, I tested positive for Mom's BRCA2 mutation a few weeks later and have had prophylactic mastectomies.  And I am nearing making a decision about my ovaries.

More on that later,

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License.


  1. Wow Joi. What an awful time. I am so sorry you and your family have had to go through so much. It really does feel like when it rains it pours. I understand how you must have felt bad to have your Mom alone while she found out about her positive results, but it was great of you to stay and take care of your Dad. You must have felt pulled in all directions that day with your brother in a different hospital than your Mom and your Dad. So glad they are all doing well now.

    I am sorry about your positive result as well. Hope you are happy and healthy post-surgery. Good luck on the ovary side of things. That will be my next step too...after I've finished my exchange surgery (hopefully end of July or early August). Thank you for sharing! :) Tracy

  2. Tracy,

    Thanks for your comments. Yes, it does seem like when it rains it pours sometimes, but we do always seem to come out into the light at some point. I am lucky to be happy and healthy at this point and in fact went today to meet with a surgeon about my ovaries, whose days are indeed numbered. Will post more about that once the details are worked out.