Joy’s story

I noticed little by little, lymph nodes appearing all over, lymph nodes that were painless. They were behind my ears, under my arms, in the crease of my leg. As soon as they started showing I knew, I knew, what it was. At this point in time I had finished pre-med and almost three years of chiropractic school, I have an extensive understanding of human anatomy and physiology. When I went to the VA hospital for confirmation it was the end of January 2004.

After a needle aspiration biopsy of a posterior auricular lymph node and the surgical removal of an inguinal lymph node, I had the results; non-Hodgkin’s peripheral T-cell lymphoma. A few more tests reveal it is in stage four; it has spread through my lymphatic system, in my spleen and bone marrow. They gave me a 50/50 chance.

Oncologist Dr. Beth Martin is assigned to me through the Palo Alto VA; she is also a medical professor at Stanford University. Together we decided on a protocol that would work best for my case. After a gauntlet of tests including: bone marrow biopsy, lumbar puncture, cardio and pulmonary tests, CAT and PET scans, and more blood work than the average person has in a lifetime, we start chemotherapy in March ’04.

About a week before I started the chemo I went to see a Guatemalan Shaman (a healer) who took me on a medicine journey using a medicine called froggie. During the ceremony I was surrounded by people who cared about me and they held me while I was on the journey. I only recall pieces of what happened and mostly I remember being scared and fighting something that was big. I awoke to the rhythmic pounding of the Shamans drum and I looked into the faces of my family and friends and I was filled with this other worldly sense of knowing. It was as if I had spoken with the divine. I knew that I would survive; I knew I was not going to die from this cancer not now and not ever.

The chemotherapy begins. I went through seven rounds, with four different types. Each time the chemo would knock the cancer down but it would come back. This lasted for three months, but we realized it was time for the big guns, a bone marrow transplant. I was scheduled to go to the VA bone marrow transplant facility in Seattle Washington. I was incredibly lucky because I did not have to wait for a donor, they only tested one person and she was a perfect match, my older sister Maeapple. Mae who is tremendously scared of needles, braved the procedure to extract her stem cells, that they would transplant to me. They need a minimum of five million cells, she gave fourteen million. In the time before I left for Seattle, I saw my chiropractor, I did fasts, cleanses, colonics, and herbal therapy, all of which I found were essential for me surviving the next couple of months. The bone marrow transplant and accompanying radiation and chemo which started in June ’04, were almost worse than the cancer itself. I threw up several times a day everyday for two months, but since I was being feed intravenously the only things that came out were bile and other various stomach juices. I dropped down to about 87 lbs. My body was in excruciating pain as my bones were trying to make new blood. My head was in a fog from all the drugs. My intestines let go for over a month. It was a horrible experience and I am grateful that I don’t remember a lot of it. After the first two post transplant months were over I began having a chiropractor and massage therapist come and see me. As I slowly recovered from the treatment I became an outpatient. They tell you when you check in for the transplant that you must stay at least 100 days post transplant, it is the minimum time required to have your immune system come back online and your other organ systems to balance out. I left Seattle after 98 days, thoroughly surprising my doctors. It was the end of September 04.

The whole process was a huge toll on me physically and emotionally, but it was almost as hard for my family and friends. Everyone around me was scared and sad and almost hard to be around. My sister Maeapple and her family took care of me while I was on the chemo. She also had to come with me to Seattle for the transplant. Her altruistic sacrifices are the reason I am alive today. She was a constant supporter, a beacon of light in the darkest moments. She managed to be my most kindred spirit and my best friend. It was hard on all my family, each weathering it in their own way. My mother came to Seattle to care for me leaving her new husband behind; my Dad flew out twice from Tennessee to be with me. My little sister Becky flew out once, and also took care of me after I left Seattle.  I went to Tennessee and live with Becky for three months. At the time I was diagnosed some of my friends who were studying holistic healing left me because of my choice to use western medicine. But this is when my true friends really showed up. Karen my dear friend and chiropractor threw my fund raiser, kept people posted, she showed up in the most beautifully needed ways. My friend Elana was my guardian angel, she kept my spirits up, and she remained constant, and strong and supportive, going above and beyond. Whatever I needed she took care of. I was lucky enough find my self with a community of people that were extremely supportive.

My recovery time after leaving Seattle was spent in Tennessee. I went to stay with my little sister Becky, and to be close to my Dad. It was restful and peaceful and I was grateful to be close to my family. I was really clear on how I wanted my recovery to go, I weaned myself off all medication as soon as possible, sooner than the doctors wanted. I began to exercise to regain the muscles that had atrophied while I was in the hospital. I pushed myself hard to be normal again. I stayed in Tennessee until Christmas and then I came home.

Cancer is an emotional titanic. Besides your own fear and anxiety, you can feel how scared everyone else is also. I wore my brave “everything is fine” face as much as I could. I convinced myself that if I could act like everything was fine then others who were so tormented by what I was going through could feel reassured and wouldn’t have to fear for me so much. I tried to keep people at a distance because it hurt me so deeply to see their pain at watching me go through this. Hindsight allows me to see that all I really managed to do was push away people who just wanted to love me. I find myself so sensitive to the pain of others, that I would rather suffer in silence than to see anyone I love hurt.

My life and how I approach it was forever changed by what I went through. I did not form many close personal relationships. Although I was a great student and a hard worker my intimate relationships were disasters. Now I no longer feel the longing to be what I thought everyone expected of me. I see the world through new eyes, eyes that show me that most things have a beauty in them if you just look the right way. I have always been a fairly optimistic person. It is easy for me to see hope even when others feel hopeless. I try to express myself as truly and authentically as I can to be in deep connection with people. I have learned how to give and receive love. I want to have a family and children. I take care of myself, my newly defined meaning of which is living a life that is full of gratitude and appreciation of love and friendship. I deeply value every moment, every connection. I am in love with life and with possibility.

Now the hard part
When you are diagnosed with cancer the one thing your Doctors are concerned about is saving your life. What they forget to tell you, when you are a young women, is that you have options pertaining to your future fertility. I was devastated when they told me that I would become infertile from the treatment, but my one solace was that I would still have a functional uterus and could be implanted with a fertilized egg. But I did not realize that infertile meant early menopause, osteoporosis, and an interesting assortment of symptoms that go along with that. But no one is concerned with preserving your fertility when you are diagnosed with cancer. After the treatment was over for the cancer and I started to recover I could tell that I wasn’t quite the same. As time went on and I still no longer had a menstrual cycle I started to feel disconnected from being a woman. I felt alone in this confusing place of being so young and not feeling like a normal woman. I felt broken, like there was something wrong with me. Why didn’t they tell me about this part? What they never once told me was that it didn’t have to be that way. I had options. I could have frozen my own ovarian tissue, and then had in transplanted back into me after the treatment was done and never be in this situation. So now I am faced with early menopause, feeling incomplete and broken and IVF to get pregnant. It used to make me so sad to think of how much I wanted to be a mother and how much I was going to have to go through to get there. I felt guilty for not having found a way to save my fertility before the treatment. And I felt bad for my husband who now had to endure all of this with me even though he has never complained once, he always smiles and says “we’ll find a way honey”. And we did find a way. We found Dr Sherman Silber, this amazing fertility specialist who is performing a brand new technique on women to restore there fertility. Ovary transplant. When I saw the TV special about what he is doing I broke down and cried. It was like someone just gave me a big huge gift. I contacted his office and asked if he could help me. So far he has done the procedure on identical twins because of their genetic match and nonexistent risk of rejection. But since my sister and I are a genetic match and I have received donor material from her without rejection this has made us candidate for the procedure. We met with Doctor Silber in early December. He and his staff are really sweet and very helpful. I could tell right away that they really cared about what they were doing. We decided to go ahead with the procedure. We are scheduled for the February 5^th 2007. So now begins the journey of us creating our family.