Prior to my diagnosis in Sacramento in 2003, I raised money for The Leukemia & Lymphoma Society (LLS) because I had a passion for helping others. I raised so much money, they made me “Woman of the Year.” My picture was on billboards and buses. I was a lobbyist at that time, and people would ask me if I was running for an elected position. I would always laugh and brush off the notion and say, “No, I am on that billboard because I raised money to help find the cure for leukemia and lymphoma. Would you like to give?”
I must say honestly that I didn’t know much about leukemia or lymphoma other than it was cancer. I was encouraged by the fact that the money I raised went to grants for research that would help those who had that cancer.
Fast forward seven years later.
In May 2010, I was diagnosed with primary central nervous system lymphoma (PCNSL), a rare form of non-Hodgkin lymphoma (NHL), brain cancer! My life would forever change. I don’t remember much, but I do remember that now I was one of those people who needed help. And I look back at all the emotions, I’m sure like others, I was so scared, so sad, so alone, so depressed, even angry, and most times in denial.
Like many of you who have experienced this, you ask, “Why is this happening to me? What did I do to deserve this? Are there others like me out there?” Well, the answer is YES! Many of you know about these emotions. You are overwhelmed by this news at first.
My philosophy was and still is to stay strong and continue on. You are not alone; I can see that I’m not alone. When I was in the hospital, I had a roommate, and I stuck to myself. I was quiet, and then I thought to myself, “Why don’t I just talk to her and see what she is thinking. Does she have the same emotions and the feeling of agony of being here too?” We started talking and became friends instantly and shared our thoughts and feelings. That gave me so much hope and moral support. So, reach out to whoever is near you, and you can share your experience with others and what they are going through. The pain and the anxiety you feel, everybody out there has some strong feelings.
I was fortunate to have a big family, lots of friends, but you may not have your friends around at that time, and your family may not be there either. But when you are in the hospital, you can reach out to someone there. There are so many helpful nurses, and all the doctors there are committed to helping you! That is what they are there for, to take care of you! As a patient, you don’t have control over the cancer or the emotions you feel. Let the emotions come through, but don’t let the emotions take over and govern your life.
We all want answers. What are the answers? Well, researchers are still working on that answer for the cure. However, when you have some energy, do what you feel is right to help yourself. And what does that mean to you? As a survivor, I reach out to patients now and try to motivate them because they all want to know what happens next. Everybody I know with cancer just wants to be normal again. “Normal,” what an ordinary word. Well, I too wanted to be normal again.
I am grateful now that I am currently taking a medication that has kept me in remission for the last nine years. And one year I had the great opportunity to testify before the California State Assembly Health Committee on a chemotherapy drug like the one I am currently taking. It is so expensive that I would have to sell my car to be able to pay for it. I was with many other patients and the advocacy team from LLS on the day the legislation was discussed at the California State Capital, and we all testified about how expensive this medication was. At the end of the Committee Hearing, all the senators voted to approve and reduce the cost and co-pay for it. Later the governor signed that legislation when it came to his desk. Now patients and survivors can have affordable co-pays for special chemotherapy medication.
Today, I try to share my strength and positive energy as a survivor. You simply can do a few things to take care of yourself. Health is so important, exercise is important, eating a healthy diet, taking deep breaths, meditating, and doing yoga. I’m sure that you have more to add to the list.
Some people call it a “fight with cancer,” this battle against cancer. I referred to it as “my journey.” My journey in this life, my faith in God, and I will overcome.
My world now consists of quality of life, my family ― my son Jake, my daughter Juliet, and my husband. I would be remiss if I didn’t include my brother who stood by me and was the first to diagnose the cancer based on my symptoms and his wife who stayed with me through every treatment. And of course, I can’t forget my mother and father who tirelessly took care of my kids while I was in the hospital. Now they live with me. My kids have two sets of Moms and Dads, and they love it! And my friends who tweet, text, and email me just keep me going.
I am so grateful for the University of California, San Francisco (UCSF). I can’t tell you enough about the amazing doctors. Dr. James Rubinstein, a physician-scientist with a background in hematology/oncology and neuro-oncology, always went the extra mile after my MRIs to let me know what my results were, whether good or bad. He shared a story with me about the year 2003 when I was “LLS Woman of the Year,” The proceeds went through a grant from LLS that actually helped in his research to develop a chemotherapy medication for my treatment. As he told me this story, I remember the goosebumps rolling down my arms and through my body. And a few years ago, he received another grant for his research from LLS. And of course, I have to mention Dr. Lawrence Kaplan who is the Director of the Lymphoma Program for my bone marrow transplant. He drew diagrams and gave me the schedule of what to expect during my transplant and further suggested I use my own bone marrow, called an autologous transplant, to keep me from rejecting a donor’s bone marrow when the bone marrow was placed back into my body. And I will never forget Dr. Penny Sneed, Senior Radiation Oncologist, who was so amazing and involved in mapping every detail of my low-dose, whole-brain radiation, and Gamma Knife treatment, not to mention all the other doctors who are a part of UCSF who came to check on me on the weekends while I was still in the hospital. And I must mention all the nurses who were there to help me and were so kind, and of course, all the employees and all the other staff at the UCSF hospital.
After spending three years going back and forth for chemotherapy, a bone marrow transplant, Gama Knife, and radiation, I can’t say enough about UCSF. The greatest hospital in the country.
People would always ask me, “How are you feeling today?” with sympathy in their eyes, to which I would always say, “I feel great.” Often, they would look at me as if I was in denial, and so I would say it again, “I feel great.” I’ve been given a gift, the gift of life. And that is a miracle. Every morning, when I wake up, I say to myself, “Today is the first day of the rest of my life.”