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.

Sunday, June 28, 2009

Family Vacation

We just came back from our family vacation...it's been a tradition, my husband and I have gone for a week away together with the kids every year since they were about 2 and 3. I love the time the four of us get to spend together without all of the distractions of work and activities, just the four of us spending time together. Time away from computers and cell phones and TVs.We've done lots of things, rented cabins for a week in the Smokies and the Dells, camped, gone sight-seeing and to water parks, to Disney. But this year, since my kids are out of high school and I don't know how many more family vacations we will get, we did something more exotic. We spent a few days in Florida followed by a 5 day Caribbean cruise.

We booked the cruise when swine flu was in the news...between that and the struggling economy, we got very good prices. I loved the four of us eating dinner together every night. For most of the years my kids were growing up, we all ate dinner together as a family. That was really important to me. In high school things changed as they were involved in so may activities. Nowadays, we all work and work different shifts, so eating dinner together is a rarity. We had a nice table for four for dinner every night we were on vacation, with great food we didn't have to cook and no dishes to wash! Lobster tails on our plates in this pic, can't beat that!

We spent a day in Cozumel, Mexico where we went snorkeling and shopping in the Mexican markets, ate at a Mexican restaurant.

We also spent a day in Key West, where the highlight for me was a butterfly conservatory...I love butterflies, to me they are symbols of eternal life. There were hundreds of different kinds of beautiful butterflies there in a huge garden setting.



We spent another day in the Central American country of Belize. What I loved most about Belize was being in a jungle/rain forest (tigers, monkeys and jaguars are native wildlife there!). I loved seeing iguanas running around like we see squirrels here at home. I also loved learning a bit about the culture from a Belizean native.

I am often asked about alternative medicine. In Belize a native told me that for most illnesses they go to the jungle to select plants that they boil and use to treat illness. She told me she had only been to a doctor once in her life. An infusion of Key Lime leaves is used for headaches, another plant for childhood fevers, another to induce miscarriage.

At my most recent AACR conference, I listened to a presentation discussing the development of the chemotherapy drug Taxol. Taxol was originally derived from the Pacific Yew tree. My sister-in-law is receiving Taxol now for breast cancer. One of the chemotherapies I was on was similar to Taxol, CPT-11 (Irinotecan/Camptosar), also initially derived from the Pacific Yew.

This Time article states that "According to the U.S. National Cancer Institute, more than 25% of the ingredients in cancer medicines today were either discovered in rain forests or synthesized in labs from discoveries made there." In Belize they have the equivalent of our drug stores, but many instead go to herbal drug stores for prepared herbal infusions. I wish we could have spent more time in the jungles and rain forests of Belize (though mosquitoes were the most abundant wildlife there). As a medical professional, I would love to spend time with an herbalist in a rain forest.

At any rate, I'm back on-line now...and truly refreshed! But most of all, I'm so glad to have had the time with my family....I hope I get a few more family vacations!

Thursday, June 18, 2009

Relief

I feel relief...didn't know that I was going to feel such relief, but I do. My youngest daughter graduated from high school last week, and I am just back from her college orientation today. She is very excited about going away to school. Both of my kids will be away at college next year.

I remember a time when it seemed so unlikely that I would live long enough for my kids to leave me as independent adults. They were in grade school when I was diagnosed and not expected to live. But I've been able to see them grow to become great adults with good values. They are excited about becoming independent and living on their own, about living away from home and family. They want to spread their wings. While I'll be sad to have them both gone next year, for me that sadness is tempered by celebration.

Eight years ago my greatest wish was to not abandon my kids, but to live long enough for them to leave me. When I was diagnosed, I was the major force and presence in their lives, but their lives now have expanded beyond family to include new friends, new adult role models, new hopes, dreams and aspirations. While we will always love each other and be close, they don't need me in the same way they did as young children, they don't depend on me as much. That's a good thing.

I will be off-line for awhile, we are going on a family vacation. I really want to enjoy our family vacations while we can as I don't know how many more there will be, I don't know where their lives will take them in the upcoming years.

I'm so glad we made it to this day!

Wednesday, June 10, 2009

Observations from the Scientist-Survivor Program at the AACRs 100th Annual Meeting

In April of this year I attended the 100th Annual Meeting of the American Association for Cancer Research as part of their Scientist-Survivor Program. My involvement in the Scientist-Survivor Program has impacted me in several ways. I have come to truly appreciate the scientists who have dedicated their lives to ending cancer’s destruction in our lives. I learn so much at these conferences; and the more I learn about cancer, the more I understand why finding a cure is so difficult. Cancer cells are truly “intelligent” and have devised many ways to overcome our own natural defenses and those we use to attack them from the outside.

I am equally as amazed at the new and innovative methods and technologies scientists are using to work toward a cure, at seeing what the future holds in finding new ways to combat the age-old and destructive disease.

I want to share some highlights of what I learned at this conference:

Cancer Genomics: The study of genomics has led to the finding that cancer is usually not caused by single genetic mutations, but by a series of genetic mutations that occur over time. Studies are underway to identify groups of mutations common to different cancer types. It has also been discovered that there are often individual differences in the genetic mutations of patients diagnosed with the same cancers.

In the near future, every individual’s cancerous tumor will be genetically tested to identify both the common and specific mutations in their particular tumor. This will result in personalized cancer treatment- pharmogenetics. Based on unique genetic changes, physicians will one day be able to determine which treatments and chemotherapies will be most effective for a particular patient. This will also allow physicians to identify which treatments will have no effect on a particular patient’s cancer and which patients are likely to have a toxic response to a particular treatment. The types and dosages of cancer treatment drugs will be individualized. Cancer genomics has also identified genetic variations in cancer that are common in other systemic diseases, such as diabetes. This may lead to findings of common metabolic pathways that enhance the treatment of many other diseases in the process of eradicating cancer.

Nanotechnology: Nanotechnology involves the use of particles one-billionth of a meter in size. A sheet of paper is 100,000 nanometers thick; a single gold atom is about nanometer in diameter. Technology is using particles of this size in several ways to advance cancer science. Nanoparticles may be one day used to deliver toxic drugs directly to cancerous tumor cells, preventing some of the toxic reactions common with current systemic cancer treatments.

Nanotechnology will be the basis for new diagnostic technology that will detect cancers at earlier stages, when they are more easily treated and have better outcomes. It is possible nanotechnology will allow metastasis to be discovered when it is still in the microscopic stage. Nanotechnology will allow particular cancer promoting protein molecules to be targeted and destroyed.

Tumor Microenvironment: Often agents that are effective against cancer cells in a lab have little to no effect on patient tumors. This is because the patient’s body provides the environment in which cancerous cells grow. Inflammation, hypoxia, low glucose levels, and pH are all things that may affect tumor growth. Cancerous cells can recruit the immune system to support cancer cell growth; cancer cells can also secrete proteins that dissolve connective tissue to allow metastasis. Learning how to manipulate the microenvironment in which the tumor grows may have as a great of an impact on cancer growth as attacking the cancerous tumor cells.

Immunology and Cancer: Twenty-three percent of malignancies are associated with infectious disease, and twenty percent of human cancer deaths occur within the context of inflammation and infection. The bacteria Helicobacter pylori is associated with gastric cancer, Hepatitis B and C viruses are associated with hepatic cancers, the Human Papillomavirus virus with cervical cancer. While acute inflammation can have an anti-tumor effect, some cancers are more common in those with autoimmune disease. Up to 50% of cancerous tumors can be composed of white blood cells. Many areas of investigation into how inflammation affects the tumor microenvironment are in progress. Trials are in progress testing cancer vaccines.

Biomarkers: Cancerous cells can release unique proteins and molecules, called biomarkers, into the blood and bodily fluids. There is ongoing research into identifying these biomarkers, correlating them to cancer types and using the identified biomarkers to help diagnose and guide patient treatment. There are thousands of biomarkers. Nanotechnology will come into play in the identification of biomarkers; using nanotechnology, it is possible there will one day be a barcode chip that using blood from a finger prick will in 5 minutes be able to identify biomarker proteins at a cost of 20 cents per protein.

Targeted Therapies: As more genes, proteins and molecules are discovered that promote or hinder cancer cell growth, specific therapies are being developed to target these particular biological entities. These therapies will be effective at destroying cancerous cells and preventing tumor formation while having little effect on normal cells. Some are already on the market, many more are being developed. Targeted therapies will soon revolutionize cancer treatment.

Prevention: There are things we can do to prevent ever getting a cancer diagnosis. We should quit smoking, or better yet, never start. High fiber diets decrease colon cancer risk by half. Exercise helps prevent cancer occurrence and recurrence. The Western diet contributes to cancer risk, as does vitamin D deficiency. More than diet though, obesity is becoming recognized as one of the greatest risk factor for the development of cancer.

Besides lifestyle, there are other means to help prevent cancer. The HPV vaccine, Hepatitis B vaccine and the eradication of helicobacter pylori infections can reduce or prevent cancers of the cervix, liver and stomach. As some cases of oral cancer are also now being associated with the HPV virus, the HPV vaccine may come into play in preventing these cancers one day too. Research is also in progress as to chemoprevention strategies...using medication to prevent cancer in those who are known to be susceptible to certain cancers.

I think in the end, the biggest impact the annual meeting has had on me was to make me aware that the only way we will see cancer defeated is by working together as a worldwide community in an unprecedented way- combining our resources and technology, sharing our discoveries, becoming a global team battling our common enemy. While more are living longer with cancer, more are being diagnosed with cancer as populations age. In the past 30 years, cancer death rates per 100,000 population have not decreased. By the year 2020, cancers will increase by 30-50 percent, and undefeated, it will take a catastrophic toll on our populations.

The deputy director of the NCI said that they are now adding to their research teams mathematicians, engineers, and physicists. The public and private sectors are starting to work together to support each other. Advocates and survivors like myself are uniting with other advocates to support research, to educate patients, to increase awareness of resources. There are so many new discoveries and technologies available that we are entering a time when working together, we have the opportunity to see cancer eradicated as a threat to humanity.

Monday, June 8, 2009

Transformed By Cancer

I read the comment to my last post, by Dennis Pyritz RN, of the site Being Cancer. I checked out and love his site, it is a wonderful resource.

I went back to his blog and read his Feb. 2009 inaugural post, Transplant Birthday. I loved that in his post that he acknowledged that we as cancer survivors do appreciate our blessings more, but he comments on the fact that "the dark hand of cancer" still transforms his life even seven years post diagnosis.

He goes on to say "Now before my diagnosis I thought of myself as a husband, a father, a nurse. But since the profundity of my cancer diagnosis all that has become somehow secondary to the thought “I have cancer” I am cancer. So “being cancer” became the central preoccupation of my life. It has pervaded everything, it has affected nearly every facet of my life - mentally, physically, socially, emotionally, spiritually. It is a constant struggle, a tug-of-war between hope and desolation. And now nearly five years from any sign of active disease this old theme - being cancer -still haunts. I suspect that for many persons with cancer, and perhaps even for those caring for persons with cancer, this theme of “being cancer” resonates loudly."

The theme I think resonates always for all of us who have walked cancer's path in our life. We are forever changed, we are never totally "cancer free". The patient interviews in the book "Dancing in Limbo: Making Sense of Life After Cancer" also found that most long-term survivors remain haunted by "the dark hand of cancer".

In reading Dennis' blog I also read that he regretfully has "retired" from nursing. As a registered nurse, I beg to disagree with him. Important roles a nurse assumes are those of educating and advocating for patients, and in that sense he continues to be a nurse...in a very profound and meaningful way. I think some of the best healers are those who have walked the path of a patient, the "wounded healers". I've always felt nursing is a "team sport", and I am very proud to have Dennis as a member of our team. He continues to heal.

Tuesday, June 2, 2009

The Tyranny of Positive Thinking

I am truly passionate about acknowledging the emotional aspects of cancer. I was privileged twice now to speak with Dr. Jimmie Holland, a hero of mine. I read her book "The Human side of Cancer: Living With Hope,Coping with Uncertainty" shortly after I was diagnosed. Who would have believed that years later, via my involvement with the American Association for Cancer Research's Scientist Survivor Program, I would actually get the chance to hear some of her presentations, to meet her and to have conversations with her? She is an amazing woman and a wonderful advocate for cancer patients and the emotional struggles that go along with a diagnosis of cancer.

I loved the chapter of her book, The Tyranny of Positive Thinking, which is available on-line. In an excerpt from her book, she writes:

It is common for people who have survived cancer to look back on the experience and attribute their survival to their positive thinking, discounting the fact that they also sought medical help early and had the best-known treatment for their cancer. This belief not only provides an explanation for their cure from cancer, but also buffers fears that it will come back. "If I licked it once with this attitude, then I can keep it from coming back the same way." This belief is reassuring and provides a way of coping with the normal fears people have about the cancer returning. A good attitude surely leads to the best and most logical approach to getting cancer successfully treated. But I have also known people with positive attitudes, who sought early diagnosis and treatment, and who simply weren't as fortunate. I have seen patients who had no belief in the mind-body connection and who discounted the importance of their attitude completely, yet they survived.

Ernie, a lawyer who was absolutely negative about every aspect of his diagnosis and treatment of lymphoma, was convinced from Day 1 that he would not survive. He explained that he usually saw the dark side of things and the glass as half-empty. Although he stuck faithfully to his chemotherapy treatment, no amount of encouragement or "good" results on his medical tests could persuade him he was doing well. He would say over and over again, "Dr. Holland, I'm not going to make it." It's now been eighteen years since his treatment; he's been cancer free ever since. He's still going strong and is still as much a pessimist as ever. Ernie is an example of how attitude is not the whole story in surviving cancer.

My view is that if a positive attitude comes naturally to you, fine. Some people are optimistic, confident, and outgoing in virtually every situation. Your attitude toward illness reflects your attitude toward life in general and your handling of day-to-day stresses and hassles. There is no way you will see that the glass is half-empty if you are certain that it is half-full. And the converse is true: If you see the glass as half-empty, I can't convince you that it is half-full. It is not easy to change people's ingrained attitudes and patterns of coping.

It's dangerous to generalize about attitudes and their impact on cancer without more information. The present-day tyranny of positive thinking sometimes victimizes people. If thinking positively works for you, well and good. If it doesn't, use the coping style that's natural to you and has worked in the past. (I discuss different modes of coping in Chapter 6.) Trying to get you to "put on a happy face," to pretend you are feeling confident when in fact you are feeling tremendously fearful and upset, can have a downside. By feigning confidence and ease about your illness and its treatment, you may cut off help and support from others. You may also be hiding anxious and depressed feelings that could be alleviated if you told your doctor how you really feel. Also, this tyranny of positive thinking can inhibit you from getting the help you may need out of fear of disappointing your loved ones or admitting to a personality some people think is fatal. If you are surrounded by "the positive attitude police'" ask your doctor, clergy, or therapist to call them off, letting them know that this is an important time for you to be honest about your feelings so that you can get all the help you need.


As a nurse I think sometimes of other disease I see, diseases with known causes and known cures. I was hospitalized once years ago with a rather severe case of pneumococcal pneumonia. We knew the cause, a bacteria, and the treatment, antibiotics. Because the cause and cure were known, there was no expectation for me to "think positive" to aid my recovery. The attitude was that I would probably feel badly with my high temp and lung congestion until the antibiotic took effect. I wasn't to blame for my illness, a bacteria caused it, and I wasn't expected to defeat it with a positive outlook and mind body connections...there was medication to solve my problem.

Cancer is different because the causes and cures are more illusive.

Many cancer patients confide to me that they resent those around them who insist they "think positive". They are exhausted by the "positive attitude police". They are tired of trying to put on a positive front around friends and family. They want to feel free to talk about how they sometimes feel...anxious, depressed and worried, but because they are expected to always be "positive", they receive no support in dealing with some of the normal negative emotions they have. They feel very alone. I was blessed to have the support of my best friend Rose, who was always willing to hear me out when I felt angry or depressed, who never once suggested that I needed to "think positive" or have a "good attitude" to defeat my cancer.

I also know of cancer patients who buy into their "dis-ease" causing their disease, their cancer...who buy into feeling personally responsible for their diagnosis, personally responsible for curing their disease. It's a terrible burden that can lead to guilt and helplessness, both which can have a negative impact on quality of life....and in the end maybe even survival.

Cancer is tough, and sometimes negative emotions are normal. It's okay to not always feel positive and upbeat. We need to allow ourselves that. We need to be able and allowed to seek help and support when we feel troubled.