My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Monday, September 21, 2009

Inflammation

There's a great article in the new issue of Cure magazine, "The Internal Flame" about the connection between chronic inflammation and cancer. I attended several scientific presentations about the inflammation-cancer connection at the AACR annual meeting this year. Long term inflammation from chronic infections, such as hepatitic C, are associated with the development of cancer. Some autoimmune diseases are also associated with an increase cancer risk. It has been discovered that cancer in essence hijacks our immune system processes to promote it's own growth and metastasis...what our body means for our good, cancer uses to proliferate it's own growth and destructive processes.

I have an autoimumne disease also, rheumatoid arthritis. Kind of interesting, cancer in the end caused my RA to worsen, as I had my ovaries removed in my cytoreduction surgery. The early menopause initiated by the removal of my ovaries caused my RA to escalate, which in turn caused me to become dependent on more immune/inflammation suppressing drugs to control that disease.

I also take a chemotherapy drug weekly, methotrexate, to control my RA. Interesting how the use of that drug came to treat autoimmune diseases. Woman who had RA and cancer and who were treated with methotrexate for cancer went into remission of their RA while they received it. They experimented with dosages until they found the lowest possible effective dosage of the chemotherapy for inducing remission in RA and other autoimmune diseases. They know it works, but not why. More chemotherapies are being tested for use in autoimmune disease. It is so interesting that drugs that suppress cancer also suppress inflammatory autoimmune disease while at the same time inflammation is being associated with cancer occurrence. I am also on several drugs to suppress my immune system and inflammatory responses, including low dose steroids.

Interesting too, that a protein our body creates and that can destroy some types of cancer cells, TNF (tumor necrosis factor), also plays a part in the destructive inflammation of RA and other autoimmune diseases. It was suggested once that I take new drugs that block the effect of tumor necrosis factor. I felt that if I had an over-abundance of this protein, in light of my cancer history, I didn't want to "block" it. I'm waiting to see long term studies about the cancer incidence in those taking these new drugs. I don't believe patients with a cancer history were included in initial clinical trials of these drugs.

At first, after I was diagnosed with cancer, I was afraid of suppressing my immune system with the RA drugs...don't we all want a good immune system and hope our immune system will prevent our cancers form recurring? I was so afraid suppressing my immune system would make me vulnerable to a cancer recurrence.

Now after reading a lot about the cancer-inflammation connection, I wonder if all of these drugs that suppress my inflammatory responses and immune system might in the end help protect me from cancer? But then again I wonder if my malfunctioning immune system and chronic inflammatory disease had anything to do with my cancer occurring in the first place. It's a mystery.

I don't know, but I continue to take my drugs as they keep me in remission from RA, and I haven't had a cancer recurrence in 8 years, so the drugs certainly do not seem to be hurting me in that regard.

But it makes me especially intrigued by the new connections between cancer and inflammation...I'm watching that research closely.

Thursday, September 17, 2009

The Terrorist Within

My last post was about 9/11 and the terrorist attacks on our country. I visited Manhattan again for yet another appointment a few months after 9/11. The depression in the city was palpable. I visited the place where the Twin Towers had been only months before. I saw the quilts, the pictures and the memorials.

I talked to the desk clerk at the hotel where I'd spent so much time and asked him what it had been like to be in the city on that day. The hotel was on the Upper East side of Manhattan. Manhattan is an island 6 miles by 11 miles. The clerk lived in lower Manhattan. His son attended a grade school in lower Manhattan near the Twin Towers. When he heard of the attack, all transportation in New York had been shut down; no cabs, trains or buses. The clerk left his job and ran through barricades all the way to lower Manhattan to find out if his son was okay. It turned out his son's class had witnessed the planes crashing into the buildings from the grade school window. He told me that even months later, his son could no longer sleep alone and climbed into bed with him every night. Life wasn't the same, he lived in fear of another attack.

Cancer is like that, a terrorist attack on our bodies, but there is nowhere to go to hide, the terrorist is within. Cancer attacks us when we least expect it. After a cancer diagnosis we live in a high level of alert all of the time. We go from high alert to red alert with every CT scan, every test. We don't trust what is around the corner, our own bodies are suspect.

Via my participation in the Scientist Survivor Program, I was very privileged to meet and speak with a renowned and personable cancer scientist, Dr. Geoff Wahl. He is passionate about our being "good ancestors" and leaving a legacy of a cancer-free world to those who survive us. He heads the Gene Expression Laboratory at the Salk Institute in California and is a past president of the American Association for Cancer Research. He is truly one of my heroes. He has devoted his life to ending cancer's reign.

Dr. Wahl wrote an article I wish you would read, Fighting the Terrorist Within. He states "Fighting cancer bears a striking resemblance to our fight against terrorism. Cancer strikes just as randomly and unpredictably, and it causes suffering, death and great personal loss to family, friends and loved ones left behind. Tragically, the Sept. 11, 2001, attacks killed more than 2,900 people on that fateful day. On any one day, cancer kills more than 1,500 people in the United States alone – about one death per minute, or more than 564,000 Americans each year."

I communicate daily with those who are victims of cancer's terrors. I've lost many friends to the terrorist that is cancer. We need to devote at least as many resources to fighting cancer, the terrorist within, as we devote to preventing terrorist attacks on our country. We need a war on cancer. We do need to be good ancestors and to abolish cancer's hold on the future of those who follow us.

Friday, September 11, 2009

September 11, 2009


I just checked the date, and realized it was September 11, a day we will always remember. The date may have more significance to me than to others. I had my cytoreduction surgery in New York City on May 16, 2001. I was scheduled for three month follow-up appointments on September 5-6, 2001.

My oncologist in New York called me near the first of September and said she would be unavailable for my Sept. 5th appointment, could I please reschedule the visit for September 11th. At the time I told her I had already booked a flight, made childcare arrangements, and reserved a hotel room, so I would be unable to change my appointment. September 11th was also my scheduled chemo day, and I didn't want to miss or reschedule a chemo treatment. She reluctantly agreed that this one time only she and I could instead have phone conference.

I went to my appointments on September 5th. As we were staying overnight in New York we had some extra time between appointments. During previous visits we had used the extra time to explore New York City. On our first visit we had explored the Upper East Side. My second visit we explored mid-town; saw Times Square, the New York City Ballet, and Carnagie Hall. The third visit in September we explored lower Manhatten. I took pictures of the Twin Towers from the Stattan Island ferry. I had the pictures developed on the 10th. The night of the 10th I showed my kids pictures of the Twin Towers on the New York City skyline. The very next day, the planes hit the towers and they ceased to exist.

When I went for my chemo appointment on September 11th, all eyes in the office were glued to the TV sets and the news broadcasts of the terrorist attacks. On the news I saw people running down streets I had walked on just days before. I'd sat on a lawn near the Twin Towers just days before eating a picnic lunch. I wondered how many of the people I'd seen that day worked in the Twin Towers and had lost their lives. I thought of what it would have been like if I'd changed my appointment to that day. Would we have been sitting next to the Twin Towers when the planes hit?

I'd been to New York with a cancer diagnosis I wasn't expected to survive, but others, I'm sure many who were very healthy, perished in the Towers just days after I'd sat on the lawn wondering if I'd live much longer. It seemed so ironic.

In my mind a phrase echoed for weeks...none of us is promised tomorrow. Maybe a thin silver lining to a cancer diagnosis is that we don't assume tomorrow anymore. We live with the fear of our days very possibly being limited. We no longer take our tomorrows for granted, we know they are not promised.

Wednesday, September 2, 2009

More Gifts from the Sea

I am currently spending a week alone at the ocean on Florida's Panhandle. My husband and his dad have always reserved Labor Day week for father-son time, and with both of my kids away at college, I decided to spend the week at the ocean. All by myself! I did this last year also, and it was awesome, so decided to take the opportunity again. For me it's a great time to think, pray, write and to grow.

I am reading a book my daughter gave me to enjoy during my week away, Anne Morrow Lindbergh's "Gift From the Sea". I love the book, I treasure Anne's wisdom. She took two weeks every year to be alone by the sea, to regroup, to soul-search, to reinvent herself. She did that even as the mother of 5 children. Cool thing is, she wrote her best-selling "Gifts From the Sea" after many years of ocean sabbaticals, when she was the age I am now, 49. She published several more books over the next two decades and lived to the age of 94...for her, middle age was just that, only the middle of her life with many more years to be productive, to grow, to make a difference.

Reading her book compelled me to read her biography. She was a great woman who was also, like her husband, an aviator. She won numerous awards and remained her own person with her own interests and goals in spite of her infant son being murdered, marital difficulties and raising 5 additional children.

I was reading today her chapter from Gifts, "The Oyster Bed" in which she contemplates the "middle age" portion of life. She talks about the growth pains of early adolescence....discontent, restlessness, doubt, despair and longing. But we accept those feelings as normal, knowing adolescence is a transition phase to growth, wisdom and to productive adulthood.

Some of those same feelings accompany middle age as children leave and our bodies age and our lives change. Maybe, she says, the feelings that accompany middle age also herald growth and new beginnings. As she states "Is it possible that middle age can be looked upon as a period of second-flowering, second growth, even a kind of second adolescence? One might be free for growth of mind, heart and talent; free at last for spiritual growth".

Women I admire most are those I see who thrive and grow and accept new challenges in middle age. I loved examples of this in a Time Magazine article I read several years ago "Midlife Crisis? Bring it On". Many middle-aged women have gained wisdom from adversity they've experienced in the first half of their life, adversity that has in the end given them new aspirations.

My best friend of 30 years, also a nurse, is my age and going back for a Master's degree to start a new vocation as a licensed counselor based on her experience with her own daughter, who was diagnosed with bipolar disorder and successfully treated years ago. My neighbor, who told me she wanted to die when at age 60 she lost her husband, in the end became curious about her own ancestry; her husband's family had been central to their lives during their marriage. That led her to learn to use a computer and genealogy software. She has since become a wizard at genealogy research, has published 2 genealogy books, has learned to drive on expressways all over the country to touch base with distant new-found relatives and has traveled to Germany and Russia to learn about her ancestry. She's connected hundreds of people to their heritage and to each other. She also now manages real estate, has learned to operate the large farm equipment of relatives she located in the Dakota's and even line dances with new friends for the first time at age of 72.

I see people now all of the time who use experiences that have brought them to middle age to reinvent themselves and their lives. I want to be like them. Maybe the hard events we overcome, like cancer, are gaitways to new beginnings, to new opportunities to reinvent ourselves, to new ways to make a difference.