Appendix Cancer Survivor's Blog

Test Stress!

2009-10-29T21:57:00.007-05:00

I have a friend who recently had a needle biopsy for a lung mass that might be cancer. She is waiting for pathology results. They told her she'd have the results in 5-7 days. She called the office over a week later, no results yet. She spoke of a PA's voice that went from chipper to kind of "depressed" on the phone when she'd called the office and asked for her test results. What did that mean?

It made me think of how closely we watch facial expressions and listen for changes in tone of anyone involved in our tests...the person performing our tests, the nurses in our physician's office, our physician as he or she enters the room. Though we are thinking a change in expression from happy to depressed is an indication of something bad about our test result, it could be a voice or facial expression changes because someone just remembered they'd forgotten to pay a bill, take out the garbage or any number of things. But we don't know. Maybe the PA on the phone with my friend had just realized he'd lost his pen as he was trying to write down her information.

Sometimes I've even thought that the nurse in the office talking to me in a cheerful (but distracted) tone might just be doing that as a cover, they know my bad test results but don't want to let on, they want the doctor to be the one to tell me.

We are hyper-vigilant in all of our observations. We read into every posture, every facial expression, every vocal inflection. I've felt before, in waiting for test results, that I could relate to criminal defendants before a judge awaiting sentencing. Will they be paroled (good test result, but we'll test you again later to see if you pass), hard time (more surgery and chemotherapy) or a death sentence? It's kind of the same for us. Awaiting our fate, our lives in the balance.

I remember having so many thoughts going through my head when I'd had a CT done and was waiting for results. Every time the phone rang I was afraid it was a doctor calling with bad news. They wouldn't call with good news, or would they? And if they didn't call, was it because they wanted to tell me the bad news in person when I had my appointment and not on the phone? Once I had a hang-up message on my answering machine a few days after a CT. Was it my doctor? Did she not want to leave the bad news on an answering machine and so hung up without leaving a message?

My husband is a nurse who works at the hospital where I have my CTs done, so instead of waiting for results, I finally started asking him to access my results on his computer at work and to let me know what they were as soon as he got them. He always called me as soon as he got to work with my results. The last time he was supposed to call me with my results, he never called. I spent 8 hours sure it was because the results were bad and he would tell me when he got home as he didn't want to tell me on the phone (turned out he got very busy when he got to work and forgot to pull them up, they were fine).

I've had 13 CTs so far and countless tumor marker tests. The stress of waiting for results is horrible. No one who hasn't had a cancer diagnosis knows what we go through.

This podcast from CR Magazine has some great ideas for dealing with the stress of testing: Beating Test Stress

I loved one of the examples in the podcast...a patient walks into the office for test results and the doctor sees her in the waiting room and says "Your tests are fine!". The next time the patient goes to the office for test results, the doctor says nothing to her in the waiting room. Is it because the news is bad? We think that way.

The advice in the podcast is very good, we should be very clear to our physicians...please call whether the news is good or bad. Or don't call at all, I want my results at the office when I am there for my appointment. Being specific about what we need can give us some control at a time we feel our lives are out of control. It's another way we can advocate for ourselves.

Attitude!

2009-10-27T21:17:00.004-05:00

I hear a lot about positive mental attitude and the fight against cancer. When I was diagnosed, I did have an attitude, but it wasn't necessarily positive. I knew my prognosis was poor, and I didn't know if I would survive. While I made plans for treatment in hopes of staying alive, I also contemplated dying and dealt with the realization I might lose my battle. The believer I was in statistics (I'd been educated in medical research), I realized I was up against tough, almost insurmountable odds. I often felt depressed, anxious, and afraid, though I didn't share those feelings with those around me who felt I needed a positive mental attitude to survive. I acted positive around them to make them feel more comfortable.

I did have an attitude, though. One of anger towards the beast cancer was in my life. One of determination to do anything I could to not let cancer control me and defeat me. I was poised to fight with all I had, to not go down without giving it everything I could. I was (and am) a control freak. I refused to let cancer control my life. I'd faced other beasts in my life, and I'd learned to fight for myself. Cancer was just a bigger beast.

That attitude served me well. It made me read all of the available research about signet ring appendix cancer (including the awful stats). It made me search for the best weapons to fight my disease in terms of specialists, surgeries and chemo. It made me bold enough to reject two respected physician's treatment recommendations and to travel across the country for treatment instead.

It made me bold enough to stay out of bed and walk halls incessantly beginning 24 hours after my surgery, though I couldn't even stand up straight. I love to play piano, and I wouldn't let cancer stop me from doing what I loved....I played the piano in the hospital lounge days after my surgery with IVs in my arms. I was driving my car and doing normal things two weeks after my surgery, independently. I wouldn't take narcotic pain medication that would slow me down; I instead took anti-inflammatory medication, NSAIDS.

My attitude made me refuse to have my life controlled by chemo treatments...I drove myself to and from treatments, went grocery shopping on the way home from chemo and continued to do athletic training while on chemotherapy (new studies show better tolerance of chemotherapy for those who work out regularly). I wasn't going to let the chemo dictated by my cancer control my life. If I had any chemo side effects, I demanded my oncologist find a way to control them, and she did.

In the end, I was discharged from my surgery in 6 days instead of the expected 14. I suffered no surgical complications. I suffered few chemo side effects, and the ones I did have were corrected early on with medication. I lived a normal life on chemo. I made a point of doing the things I liked to do and being independent during treatment. My blood counts didn't drop, I was never nauseated, I ate well and gained weight while on chemo.

After treatment, while I was living in cancer's "limbo", a tough place emotionally, I sought help. I read books on coping with fear, I joined a support group for a bit, I volunteered at a hospice to become comfortable with the notion of dying. I also did a lot of volunteer work...soup kitchens, nursing homes, delivering Meals on Wheels to the elderly and handicapped. In part my volunteer work reminded me of how fortunate I was...I wasn't hungry, I had a home and could walk without the aid of a walker. It helped me to remember to appreciate that, helped me to look beyond myself and my situation.

I feel badly sometimes when I talk to patients who assume their life will be consumed by surgical recovery for many months. Who assume chemotherapy and its side effects will dictate and be a detriment to their lives. Who surrender to the cancer diagnosis.

I don't know if that determined and angry attitude played a part in my survival, but I think it at least helped me through the rough parts of treatment and the emotional limbo beyond. I think in the end it helped my outcomes from surgery, chemo and cancer limbo to be manageable. Maybe it's the reason I recovered so rapidly from surgery, suffered so few chemo side effects, have remained cancer-free.

And in the end I beat the beast. Cancer lost its battle for my life. I don't credit a positive attitude, but I credit an angry and determined attitude. The determination to stand up to and challenge the beast that is cancer.

My advice to those diagnosed is to not surrender, but to fight. A cancer diagnosis knocks us down, but we can't let it keep us down.

Thank You CR Magazine!

2009-10-13T21:31:00.005-05:00

I am deeply grateful to CR Magazine, a publication of the American Association for Cancer Research, for an article just released in their 2009 fall edition, Fairest of All, about Audrey Hepburn's struggle with appendiceal cancer. Audrey Hepburn lost her battle with the disease in 1993.

The article honored Audrey Hepburn's life, but also did so much to promote awareness of appendiceal cancer and the newer treatments available. I was honored to be interviewed for the article a few months ago; a bit of my story is included.

Appendiceal cancer is an orphan disease, many of us newly diagnosed learn for the first time that the disease even exists, that an appendix can become cancerous. Most physicians have seen few if any cases in their lifetime. Those of us who seek treatment from a specialist often have to travel great distances.

Our disease is rare, so receives little media attention and few research dollars. Just this week I was asked if there is an appendix cancer awareness month...to my knowledge there is not. But there should be.

The CR Magazine article is free, it is available on-line even without a subscription to the magazine. The article has also been posted on the American Association for Cancer Research's home page "In the Spotlight".

I hope the article is widely read. Again, I am very grateful to CR Magazine for drawing attention to our battle and for promoting awareness about our disease. They did us a great service.

Being Your Own Advocate

2009-10-11T13:52:00.010-05:00

One thing I've learned in my life in the cancer community is how important it is to be your own advocate.

I had an advantage at the time I was diagnosed in that I was already a medical professional. I had great doctors and surgeons locally, but being around physicians daily for years, I had never bought into the "doctor as God" mentality. I trusted and respected my doctors, and being in the medical profession also meant I knew who the good doctors and surgeons were so I was always cared for by the best.

When I was diagnosed, my surgeon told me I had a rare cancer, and he wasn't sure exactly what the treatment might require; he would do some research and get back to me. In the end, I was told that in three days they recommended I have a hemicolectomy, as they knew I needed that. The plan was to not discharge me from the first surgery, but to proceed directly with the hemicoloctomy.

I requested instead to be discharged without the hemicolectomy. If I was going to have a major surgery, I told them, I wanted only one major surgery, and I wanted to have the correct surgery the first time. I wanted to do some of my own research into the disease before I proceeded with further treatment. My surgeon understood and discharged me from the hospital. He respected my decision.

I went home and spent hours and hours on the internet looking for medical research studies related to appendix cancer. It was hard...there was little information and the information I did find didn't show very good survival statistics. Doing the research was very difficult emotionally; I realized how serious my cancer was. I so wished I instead had breast cancer or another cancer with 80-90% survival rates, a cancer that had extensively published research and standardized treatment protocols. Again, though, I was fortunate that being a medical professional of many years, I was able to read and interpret the medical research articles I did find.

From my research, I felt my best prospects seemed to be a cytoreduction surgery and peritoneal chemotherapy. I also decided I needed a surgical oncologist and not a general surgeon.

When I first met with my local oncologist, she agreed that my cancer had a poor prognosis and for optimal treatment I needed to see a surgical oncologist at a university hospital in nearby Chicago. She agreed I needed a cytoreduction surgery, not just a hemicolectomy. When my medical records were sent to the surgical oncologist, though, my appointment there was promptly canceled; I was told they had no treatment available that could help me based on the high grade of my tumor and appendiceal perforation. They said my cancer would become widespread into my abdomen and that I would eventually succumb to it, I would not survive. Had I accepted that respected surgeon's initial evaluation, I would not be alive today.

In the end I did my own research and referred myself to Sloan-Kettering as I knew they offered cytoreduction surgery and peritoneal chemotherapy for appendix cancer. I told my local oncologist I had self-referred and made an appointment to be evaluated there, a decision she in the end supported.

I went to my initial appointment at Sloan loaded with intelligent questions based on the research I had done about my disease. I requested peritoneal chemo within 24 hours of my surgery, which wasn't in their original plan, and that request was granted. I requested to add to the surgical consent another procedure, the insertion of a portacath for future IV chemo vs. having a second later surgery at home for that procedure, that request was also honored. I was able to have input into the size of my abdominal incision (no, vanity isn't a concern, open me as wide as you need to take a really good look!). We also agreed that my ovaries should be removed though there was not yet signs of metastatsis there, as appendix cancer so commonly spreads to the ovaries, and I was at risk due to the perforation. Even after my surgery I asked that my pain medication be changed from morphine to a powerful non-narcotic pain medication that I preferred, Toradol; that request was also honored. I think not being on narcotics for pain prevented post-operative nausea, helped me stay more awake and active as I recovered and helped my bowel function return to normal sooner.

In the end I was successfully treated, though treatment was delayed a month and a half while I did research and sought opinions. I am so glad I didn't agree to the initial hemicolectomy offered by my general surgeon who felt my cancer was a form of colon cancer and needed to be treated as such. As it turned out, I had other small tumors in my abdomen and needed more than a hemicolectomy. I don't know if those smaller tumors would have been discovered by a general surgeon during a hemicolectomy, they were not discovered during my initial exploratory laparoscopic surgery or CT scan. If I'd had the hemicolectomy locally, I also would not have been offered peritoneal chemotherapy, which I think was important to my long term recurrence-free survival. If I'd initially had the hemicolectomy and had a later recurrence, scar tissue and adhesions would have made a second surgery with peritoneal chemo potentially less successful.

I think it's important, especially for those of us with rare or difficult cancers, to seek more than one opinion (I had three prior to definitive treatment) and to be educated enough to know what our choices may be...and to find, as I was fortunate enough to have found, a surgeon who respected my right to have input into my treatment. A surgeon who treated me as a partner and team member in making treatment decisions.

There are many things important to survival, but I think one of the most important things we can do, hard as it may be, is to educate ourselves early on about our cancer and to become our own advocates. We need to be able to make informed and intelligent decisions, and to actively participate in our treatment decisions.

Survivor Seasons

2009-10-04T15:04:00.008-05:00

Over the years since my cancer was diagnosed and treated, I’ve become aware of the new trend addressing survivorship issues. The recent issue of Cure magazine came with supplement included, Surviving Well. It documents many things those of us who have been diagnosed with cancer know…it’s a long road, and the time after treatment ends can be just as difficult as being diagnosed was initially.

My heart goes out to those who finish treatment as I know that is the beginning one of the more difficult roads on the cancer journey; and about that time, those around us with no cancer history expect us to be return to our old selves, to put cancer behind us and to resume our pre-cancer lives where we left off. But we can’t. This period of time has become known as the season of “Transitional Survivorship”. It is an emotional time of anxiety, fatigue, grief, insomnia and fear of recurrence. We are acutely aware of our own mortality, we feel a loss of the ability to control our lives and our futures, we have to readjust to the work environment, have a mountain of medical bills to pay, and relationships to those around us change. For many women who have had an appendix cancer surgery, we’ve lost our ovaries, so this period of time is also an adjustment to surgical menopause and all of the emotions and physical changes surrounding that. It's emotionally a very difficult time. It is said the longer our initial cancer treatment, the longer this transitional phase lasts. And for appendiceal cancer patients, the surgery is major, the recovery time long, and chemotherapy prolonged.

In the Surviving Well publication, a woman interviewed struggled emotionally and finally joined a support group to help with emotional healing three years after she finished treatment. The American Cancer Society found that 30% of survivor have long-term emotional effects even after 11 years of survival. I've been in touch with about 700 appendiceal cancer patients, and for almost all, the emotional recovery in the aftermath of treatment has been much more difficult that their physical recovery from surgery and chemo. The transitional phase can be a long one.

I am blessed; having lived in the “Transitional Survivor” season for many years, I am finally entering the “Permanent Survivor” season. I worry less about recurrence, I’ve started making future plans again, I don’t think of cancer every day, I don’t get as many tests done, I feel less vulnerable. I feel a little more in control of my life and my future…though I know I am at risk for second primary cancers related to treatment and that there are no guarantees I won’t have a recurrence. I treat myself better and make better use of my time. I live more purposefully. I have many new friends and stronger relationships in my life. I’m not the same person I was before cancer, but I like myself and my “new normal” better now.

But it took a long time and many emotional struggles to get here. It was not, by any stretch of the imagination, easy to get here, to the place I am now.

Inflammation

2009-09-21T22:27:00.004-05:00

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.

The Terrorist Within

2009-09-17T00:08:00.008-05:00

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.

September 11, 2009

2009-09-11T11:01:00.012-05:00

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.

More Gifts from the Sea

2009-09-02T14:28:00.012-05:00

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.

Beginning, Middles and Ends

2009-08-26T23:39:00.010-05:00

Sorry I have not posted in awhile. My life has been kind of busy lately, getting both of my kids off to college. I am officially an "empty-nester" now for the first time. I have been an "empty-nester" for 7 days.

My kids have been calling often, so we are still in close touch, and my youngest plans to come home to visit often. I'm so glad for that (even though we ran over on cell phone minutes!).

I talked to a mom a few days ago who has one in college and another a senior in high school. When I mentioned to her I was an empty nester now as both of my kids are away, she got a look of dread in her eyes. She is terrified of her upcoming empty nester days. Another empty-nester mom wrote me yesterday...she is a few years out in the experience, and two of her kids now live out of the country, one in Japan and one in the Middle East. Once we let them out of the nest we don't know how far away theirs lives will take them.

I know lots of women experience a crisis when their kids leave the nest. I'm not having a crisis; but I guess my perspective is different.

When I was told I had an untreatable cancer and not expected to survive, all I wanted in life was to be here long enough to raise my kids to independence, to see them off on their own independent life journeys. So for me, in a sense, it's a celebration to have made it this far. When I was diagnosed, I did not want to abandon my kids when they needed me, I wanted to live long enough for them to "abandon" me, to fly off on their own wings as adults. I have realized that dream and am very, very grateful for that.

While I love and miss my kids, I want them to be able to achieve dreams and to be independent and not to rely upon me solely, as they did when I was diagnosed. I want them to yes, care about me and love me and for us to always be close, but I don't want their future to depend on my presence...as cancer made me understand how fragile my presence is. I want them to have dreams and goals and hopes that are theirs to motivate them, to have lots of people who support them whether I am here or not. They are amazing people and have so much to offer this world.

I always pursue spiritual growth. To me it's why we are here...I have always believed we are first spiritual beings having a physical experience vs. physical beings having a spiritual experience. To me our physical presence isn't "it", our experience in this lifetime is just a piece of a larger puzzle.

In a grocery store checkout line recently, I was intrigued by a booklet entitled "Complete Idiot's Guide to Spiritual Healing". In many ways I am a novice in life, and I am not very proud, so I love the "Idiot" books. I already own a few. I paid the $2.50 for the booklet, and haven't read it all yet, but there was a paragraph I flagged in the beginning from the chapter that I liked, "Beginnings, Middles and Ends".

I've been at all of those points with my kids...beginnings as a new mother, middle times when I was raising them, and ends, now, when they are on their own as individuals with their own dreams and values to guide them.

The paragraph I flagged in the "Idiot" booklet said this..."Life is a series of beginnings, middles and ends. Each ending is the start of a new beginning and each beginning is the start of a new ending. Often we have a hard time letting go and trusting the process. We fearfully hold on to something when it is time to let go and miss the joy life has to offer". I agree.

I am so fortunate...I've lost friends to appendix cancer who still had children under 5 years old. I've lost friends who were in the middle, with pre-teen and teen children who still needed their mom. I've lost friends who were never able even to realize their dream of being a mom. One in her 30s died only an hour after I met her in Texas. So many lives cut short. I've lost a lot of friends to appendix cancer; that tempers my empty-nest perspective now.

So I see this empty-nester time as an end of sorts...of my kids needing me less and being less dependent on me, but also a time as a new beginning, for them and for myself. While I feel a sense of loss, I also feel a sense of liberation. For my kids and for me, it is a not so much a time of endings, but of new beginnings. I'm not done yet, and neither are they.

I'm so glad that my kids, and I, have that opportunity. For a new adventure, a new beginning. I am so grateful for this time in our lives.

One Day At A Time

2009-08-13T00:30:00.006-05:00

I get frustrated sometimes at how the idea of living "one day at a time" is glamorized. Appreciating what each new day brings and enjoying the good things in your life every day is something many are better at after a cancer diagnosis, but that's not the same as living "one day at a time". Many of us after a cancer diagnosis do involuntarily live "one day at a time", because we lose the ability to think of our life in future terms. We understand profoundly that we may not have a future. It's a tough way to live.

When I was diagnosed with a high grade Stage IV cancer, the survival statistics I found in medical literature indicated my odds of dying within 3 years were 9 out of 10. I have always trusted statistics. I am medically educated and for the most part diseases in patients I've cared for, with few exceptions, have followed documented statistical patterns for their illness. I'd seen some odds defied over my decades of caring for the ill, but not often. So I trusted my own disease statistics.

For the longest time after my diagnosis I was unable to plan for a future. I could not schedule appointments for 6 month dental cleanings. I could not say the words "next year". I couldn't commit to vacation plans. I had trouble making career commitments, so I did a lot of volunteer work. When I returned to work I chose PRN employment that required minimal commitment.

I think we take for granted how often we assume a future. We take for granted all of the times we say without thinking "next summer" or "next Christmas" or "when my kids are older" or "when I retire". When I could no longer take a future for granted, I learned that much of what makes our lives worth living is anticipating a future, reaching for goals, realizing dreams, making plans.

I have now survived cancer-free for eight years. I can say now "next year", though I will never think about or make plans for a retirement...I can't think that far into the future still. I know from my own experience how quickly the bottom can fall out of our lives. I know with certainty none of us is promised tomorrow. So I plan a bit for the future now and have learned again to set goals and dream a bit, but it will always be with reservation. I am no longer naive. I no longer assume I will live to old age.

I miss still the old before-cancer days when I took time in my life for granted, when knowing that bad things could happen was an intellectual but not emotional knowledge.

My kids are young adults now. They see their future as wide open. They are making plans for this year but already contemplating where they will live next year, whether they will change their college majors, whether they might one day marry or maybe stay single or live in another country. They think maybe one day they will have children or maybe not, maybe they will adopt instead of having their own. They take for granted a future of endless possibilities and dreams. I remember when I once felt that way.

As I watch my kids dream of the future, at the same time I am trying to support the family a 23 year old cancer patient who will soon lose his battle after a two year fight, who is now living without plans for a future after almost completing his college education.

I hope my kids get to keep planning and dreaming....to stay naive for a long while.
I hope that they don't have to live "one day at a time" until they are very old. That they continue can dream of endless possibilities for the future. That they never feel their future is threatened.

Empowerment

2009-08-04T22:46:00.009-05:00

I have a kind of interesting story. I had joined our local YMCA gym awhile ago to work out, get fit, and lose weight. I was working out several days a week, and I guess got kind of bored with the gym routine so decided to check out some of their exercise classes. They offered a Tai Chi class, and I decided to enroll. An appendix cancer patient I was in contact with was getting a Master's degree in Chinese medicine, and I'd heard Tai Chi was a kind of "moving meditation", so I was intrigued. It turned out the YMCA class was canceled, so I checked in my community to see if anyone else offered Tai Chi classes. I found one and joined. It turned out, to my surprise, that the class wasn't about the "mind body moving meditation" form of Tai Chi, but Tai Chi as a martial art focusing on self defense.

As a teen and young adult decades ago, I'd been physically abused, so know what it's like to feel physically vulnerable. I also backpack with another woman, and we'd been told before by rangers to be careful as women had been attacked in wilderness areas where we wanted to backpack. I'd toyed with the idea of taking a self-defense class before, so decided to stick with the Tai Chi martial art class.

In my Tai Chi class we learn how to disarm and disable anyone who might attack us. Tai Chi is actually a deadly martial art. We also learn pressure points...amazing, I've had a martial arts master use pressure points on my arm that made me unable to use my legs. Tai Chi as a martial art relies heavily on the use of pressure points.

Tai Chi is hard for me as it requires me to be very focused on detail in movement, to move slowly, to learn complicated postures and form....being strong and fit and large means nothing in this martial art, technique is everything. It requires discipline, confidence, patience and concentration...all good attributes.

But to me it is so empowering. It gives me tools to defend myself; it gives me confidence, it makes me less afraid to do things I might want to try solo as a female. Fear is so limiting. I don't want to be afraid. I want to feel strong and confident.

I think a sense of empowerment as a cancer patient is vital. Education and knowledge empowers us. Having choices empowers us. Feeling a sense of control empowers us.

Empowerment is a good thing.

One of my goals is to form a group for cancer patients at a large local oncology practice. Not a "support group", but an "empowerment group". A group of cancer patients who can share ideas and knowledge and resources. Cancer patients who give confidence to and yes, even support each other. Who gather strength from each other. Who empower each other in our battle against cancer.

What Happens to a Donated Tumor?

2009-07-24T00:34:00.002-05:00

I truly love CR magazine. It's a relatively new publication of the American Association for Cancer Research. Since I've been involved in the Scientist-Survivor Program, I've been able to meet the staff of the magazine...unbelievable to me how such a small staff is able to turn out such a quality publication. Their most recent issue has an article about donating our tumor specimens for scientific research.

Until the last conference I attended at the AACR's annual meeting, I'd never really thought about donating tumor specimens. Anna Barker, the Deputy Director of the NCI talked to the survivors and advocates at the latest conference about the need for patients to know what happens to their tumors when they are removed, how they are preserved if saved, who has access to them, where they are stored.

As a nurse, most surgical consents I have patients sign have a general clause releasing rights to all tissues removed from the patient's body. I'm guessing my own surgical consent said something to the same effect. I think I'm like most cancer patients; we want our tumors removed, and assume they are disposed of...good riddance. We want our tumors gone and destroyed.

After becoming familiar with cancer genomics with and the Cancer Genome Atlas project via my involvement in the Scientist-Survivor Program, though, I now would care now what happened to my excised tumor, how it was preserved. In the best of worlds, all of our removed tumors would be preserved in their most usable form and be accessible to all doing cancer research. Maybe scientific and pharmaceutical access to our tumor specimens would advance the science of cancer research and help to one day find a cure for our cancers.

For a great article on the subject, read "What Happens to a Donated Tumor?" in the current issue of CR Magazine. Very thought-provoking. Something we really need to think about as cancer patients and survivors. We need to make our struggle count, we need to help someone else not have to face what we have faced.

When Someone You Love Has Cancer

2009-07-22T10:23:00.008-05:00

I was recently asked to participate in another blog book tour. I love to read and love to write, so was happy to accept the invitation. The book was "When Someone You Love Has Cancer: Comfort and Encouragement for Caregivers and Loved Ones" written by Cecil Murphey, who co-authored with Don Piper another book I'd enjoyed, "90 Minutes in Heaven". Cecil Murphy has written over 100 books, many as a "ghost writer". He is a former pastor and volunteer hospital chaplain. He is also the husband of a woman diagnosed with aggressive breast cancer, so is very qualified to address this issue.

Before I received the book, I was worried about being able to read it in time write my review. I was pleasantly surprised when I received the book; it was only 67 pages long. What impressed me most about the book was the profound wisdom contained in those few pages. I appreciated that the book was short and an easy read, especially considering its intended audience, those traveling the cancer journey with someone they love. From my own experience, I was so overwhelmed after my own diagnosis that I had trouble concentrating for a long time. I craved simplicity. Reading hundreds of pages wasn't something I could easily do at the time. Those close to a person with a cancer diagnosis I'm sure are in a similar frame of mind.

The book was filled with wisdom to guide those supporting someone with a cancer diagnosis. He identified his own sense of shock and helplessness when someone he loved was diagnosed. We all, patients and caregivers alike, hear nothing after the words "its cancer" at the initial doctor's appointment. He talks about the numbness, shock and grief of having someone you love diagnosed with cancer. Caregivers share many of the same emotions those diagnosed feel.

The book brought up many good points that I appreciated. He recommends being an active listener, being available to a cancer patient even when they don't want to speak or share, supporting in silence. He advocates acknowledging the negative thoughts and feelings, the anger expressed by cancer patients; we all experience those emotions and feel particularly alone when people are not comfortable allowing us to express them. He also wrote of the need to avoid indulging in statements such as "I know you'll beat this", words that often make the caregiver feel better, but that are not helpful to the patient. There is no way of knowing if we will beat our disease, we know many who don’t. We need to deal with the potential reality of a bad outcome also.

Even as a Christian and former pastor, he discourages throwing around religious slogans. A minister I know who has a great belief in heaven and whose wife was diagnosed with an aggressive cancer once tearfully said in response to congregation members who talked about his wife's eternal destiny "Yes, I KNOW she'll go to heaven, but I don't WANT her to go now". Statements such as “It’s God’s will” are not helpful. From here we can't understand or know the reasons or God’s will, to pretend we do is not helpful.

Cecil also talks about helping someone diagnosed in a practical sense. The statement "Let me know if I can be of any help" is useless. It is better to objectively identify needs and to just fill them....as church members did for me with a check anonymously left on my windshield to help with travel expenses. I received many calling cards given to me by friends when I needed to contact medical facilities across the county attempting to arrange treatment. A cell phone was given to me by a sister who knew I'd need to communicate with my kids while I was across the country for treatment. Another sister paid our hotel bills unasked when I was 750 miles from home seeking care. My mother-in-law supported my kids emotionally and provided child care when I was across the country having surgery. That help was very much appreciated. There is a great appendix “Practical Things you Can Do to Help Those Diagnosed with Cancer” at the end of the book.

One of the things I loved most about his book was his acknowledging that even those of us who have faith in God feel God's silence at some point in time. I know I did. For a long while I experienced a "dark night of the soul", God seemed not to be there for me. It was a very dark and depressing time for me, but in the end it strengthened my faith. He experienced his own "dark night of the soul" for 18 months so could relate...I've ordered another of his books about that time in his life, "Seeking God's Hidden Face: When God Seems Absent". In my cancer world, that seems to be a common experience.

From his own perspective dealing with potentially losing his wife, the love of his life (who is now 10 years cancer free), Cecil shares many of the valuable things he learned on the journey. His book would be a great gift to anyone suddenly thrust into the role of supporting a loved one with cancer.

There is a Grand Prize offered to readers participating in this tour, the blog tour participant who has the most comments to their review will be able to select the grand prize winner from those who comment. The winner will receive a package of books written by Cecil Murphy with a retail value of over $300.

And to all of you who who have or are supporting someone you love diagnosed with cancer, thank you. You are our heros!

Finding Joy

2009-07-17T23:41:00.015-05:00

Sometimes being in the cancer world is tough, sometimes joy gets hard to find.

I was at a point a few weeks ago where I was kind of down. The cancer community is a tough place to be, there's a lot of sadness and grief there. I also work in a hospital intensive care unit. Sometimes I get overwhelmed with the sadness and struggle that surrounds me. I am also getting ready to send my youngest off to college...both of my kids will live away from home next year. We are close and I will miss them a lot. And there's a lot that goes on with kids who are on the cusp of independence. They still love and need you, but look forward to life on their own, to living separate and independent lives. You want them to be independent adults, but still feel a loss.

So, I was needing to find some joy. I wanted to feel really good and lighthearted for a bit.

One of the things that brings me great joy is playing piano. I'd wanted to learn to play since I was 5 years old. I finally started to take lessons at age 29 and actually learned to improvise popular piano music and began to play professionally a few years later. I used to play a lot, but sometimes life gets in the way, and I hadn't played for a long time. So, I played for a little bit at home. Then I decided to do an impromptu visit to the soup kitchen I used to run and to play for the guests there, rusty as I was. I just left my house and showed to the soup kitchen unannounced. I played while the guests were eating lunch, like I did a few years ago. The only thing better than playing for myself is playing for others, knowing the music brings back happy memories for them, seeing them smile. I connect with others via music in a way I can't with words sometimes.

It turned out it was the best thing I could have done. I got to see all of the people who work at the soup kitchen who are like family to me, for a few years we worked together every week; shared our troubles while we worked, teased each other, celebrated each others birthdays, successes and set-backs. We even made time to get together for lunch and dinner when we weren't working at the soup kitchen. I'd missed everyone there. I was treated so well, lots of hugs, lots of catching up, people applauded my piano playing. I felt very loved. I did my best to play requests. Strange thing about me, I am horrible at remembering names, but I always remember the guest's favorite songs. I had a great time, and definitely felt joyful. I went back to play again this week.

I think we need to make a priority of doing what brings us joy. I think it's as important as chemo, as important as a healthy diet, as important as breathing and sleeping. We make time for those things as we see them as priorities, but I think finding what brings us joy should be just as much as a priority, it's vital. It's not selfish to do what makes us happy as individuals, it helps us recharge and be able to give more to others and to ourselves. Whether it's alone time, time in nature, music, or reading a novel...whatever brings us joy needs to be our priority. Seeking joy is a healthy thing to do, we need to make the time.

Emotional Honesty

2009-07-07T23:07:00.007-05:00

I had an interesting night at work last night. I took care of a Lithuanian patient who had had a stroke affecting her ability to speak. Though she had immigrated to this country decades ago and spoke fluent English, the speech centers of her brain were affected. She could only speak her native language. I had a CNA working with me; she was also from Lithuania and served as a translator for me. I know nothing about Lithuania, so talked for awhile about that country and its culture with my CNA, who immigrated here at age 46. Turns out that in Lithuania she'd been an economist, with a Master's Degree in economy. I am very interested in other cultures, so talked with her for awhile.

In her younger years, Lithuania had been under communist control; leaving the country had been illegal, and attending church had been forbidden. But under communist socialist control, she said their needs had been met, that her education had been free, she had made a good living as a single parent and she paid no taxes. She'd also lived in Lithuania after independence had been achieved. She said there were good and bad things about living under both regimes. In some ways her life was harder after independence was achieved and the communist government overthrown.

I asked her what about American culture had been most difficult for her to get used to, and I was surprised by her answer. She said Americans were always smiling. That they felt they had to put on a happy face even when they were depressed, even when they were experiencing times of despair, even when they were in pain. She said an American would smile at you and act friendly even when they didn't like you. She almost felt like we were emotionally dishonest. She said that in her country people were more honest and open about what they were feeling, so it was much easier to be supportive of other people as you knew what they were feeling and what they needed. They felt no need to conceal negative emotions.

I think after listening to her, that she was right. In America, we always feel a need to "keep a stiff upper lip", to "think positive", to "look at the bright side". Maybe that's not a good thing.

I know in my cancer world many struggle with depression, anger, fear and grief. Many of the 600 cancer patients I've communicated with to date have shared those feelings with me. But most are unable to share those feelings with those around them, those who love them. Depression and fear are seen as "giving up", anger is misunderstood, grief is minimized. Many are told they have to "stay positive" to beat cancer, though studies have shown that is not true. Their emotional struggles are minimized.

I heard a saying years ago that always stuck with me. It was that joy is doubled and despair is halved when shared. The negative feelings associated with a cancer diagnosis need to be shared and understood by those surrounding the person diagnosed. They are a normal part of the cancer experience and need to be acknowledged and expressed. I wonder if in our country there would be less of a need to take antidepressants and to see therapists if we felt we could be more open with our feeling, if we could more easily share what we felt with those around us. Sometimes I think in this digital age especially, we communicate with more people, but the quality and depth of our comunication suffers.

When someone asks me how they can best help a cancer patient, I tell them to listen without offering advice. To allow the cancer patient to freely express the negative emotions that surface. To just listen and not advise sometimes, to allow the patient express the normal emotions that they feel.

We all need to learn to accept and ride the storms in our lives and to seek help when the going gets rough. Maybe we all need to be a bit more Lithuanian. Rainbows only happen after the storm, not before. We need support those during their rainy seasons, to acknowledge and help them ride out their storms.

Family Vacation

2009-06-28T23:21:00.014-05:00

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!

Relief

2009-06-18T19:43:00.006-05:00

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!

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

2009-06-10T12:49:00.003-05:00

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.

Transformed By Cancer

2009-06-08T21:59:00.007-05:00

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.

The Tyranny of Positive Thinking

2009-06-02T23:42:00.021-05:00

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.

Things we have in common....

2009-05-31T01:31:00.011-05:00

I've been a part of the community of cancer patients for 8 years now. I've communicated with hundreds of cancer patients via my web site, cancer survivor events, conferences, walks. I've noticed common themes arise in the cancer community. Things I thought were unique to my experience are not.

Life is different for all of us after cancer. We don't finish treatment, enter remission and go back to our old lives. Cancer changes us forever. A new friend who is also an 8 year survivor of advanced cancer told me a day doesn't go by that cancer does not enter her mind. Mine either. Cancer is in our thoughts every day after we are diagnosed, even years down the road. I communicate with cancer patients daily, so I will always be in the cancer world, but I noticed after I finished cancer treatment and before I became an advocate that I thought of cancer every day even when I tried not to. Life after cancer was not what I expected it to be...cancer isn't something you leave behind; you take the experience with you everywhere you go for the rest of your life. Your life becomes divided into "before cancer" and "after cancer". Interesting, I've had a few 20 year appendix cancer survivors write me after finding my web site. Two decades later, they are Googling appendix cancer.

I've noticed many of us have a great need to find purpose in our lives. After cancer treatment, I became obsessed with finding a purpose for my existance. I read a bazillion books on finding your life purpose. I'd actually had been looking for possible new career paths and thinking about my purpose before my diagnosis. Searching for purpose is also a middle age thing, but since most of us with appendix cancer are diagnosed at middle age, I think our quest for purpose becomes compounded. Sometimes it almost seems we feel a need to feel worthy of our survival, to earn the right to remain cancer-free, to stay alive. Kind of funny, but before cancer I didn't feel such a great need to be worthy of being alive, I don't think. I was a good person, but I took being alive and planning a future for granted. It's kind of ironic that I didn't appreciate being cancer free before I was diagnosed with cancer. I should have.

I've also noticed that after cancer most of us place much less value in our careers. After cancer we go back to work, but it's not the same. Before cancer our careers defined us, gave us value. But after cancer, they aren't quite so important, they fall short, they often aren't enough. Our values have changed. Now for me my nursing career has become almost a side job, my purpose is more about the things I don't get paid to do.

We also become much more spiritual. For me spirituality is not the same as religion.
I was always more spiritual than religious, but now I spend more time asking bigger and more profound questions about time and life. Simple and pat answers aren't enough anymore. I do a lot more exploring, a lot more searching, a lot more wondering. In a spiritual sense, I have become more open-minded, more accepting of wonder. I'm much more into the big picture now, less into the small details.

We also learn to value quality over quantity. We all want more time, but we want it to be time we can use to live well. We've learned from being in the cancer community that living longer is not always better. We've all lost friends and are grateful when their suffering is finally over. But whenever we've lost someone, we've wondered, just for a bit, if we might be next.

Scanxiety

2009-05-23T11:04:00.010-05:00

I found this article from the Philadelphia Inquirer "Beset with 'scanxiety', cancer patients feel a psychic pain" . I've come to learn within the cancer community a new term, “scanxiety". All of us with appendix cancer have experienced it.

The article talks about “these tests that spy on cancer -- telling patients when the disease is dormant and when it's growing -- give life a new emotional rhythm. For most healthy people, feelings pivot a little with unpredictable daily experiences -- the grumpy boss who snarls an unreasonable order, or a friend who calls with a funny story.

But in the parallel universe that cancer patients and their families inhabit, CAT and PET scans, MRIs and blood tests, divide a life in regular increments of life-and-death fear, of ever-evolving hopes, and "new normals." Every six weeks or three months or year, people find out whether they've hit another fork in the cancer-treatment road. Whether they're closer to a cure. Or death.”

Cancer survivors really do live in a "parallel universe", and our lives do involve life and death fears. I think now of days past when I was nervous giving a speech, taking a test, flying on a plane, starting a new job or losing a job in my "old normal" life. Cancer testing makes all of those fears trivial.

Cancer testing is essential, because the earlier we detect a recurrence the better chance we have of fighting it; but we all know our odds of survival decrease with recurrence. And we all know the potential for a test result to signify the end of our lives. I've always kind of felt waiting for a CT result was like waiting for a sentence from a court of law. Someone else will decide the course of our life based on the test results, and every test has the potential to be a death sentence.

I recently was having some pelvic discomfort (right side where my primary tumor had been, no less) at 8 years out. But I minimized it, as at 8 years out I was probably done, maybe even beyond remission, maybe even "cured". Then a signet ring appendix cancer patient's friend wrote me. Her friend was an eight year cancer-free signet ring survivor, but the disease was back, back in a big way. She'd had a massive surgery to attempt to remove the new tumors. So, I was back feeling vulnerable again. I had decided to quit CT scans and the vulnerability that comes with them, but went for another one after receiving that letter.

I’ve lost count of how many CT scans I’ve had.

It never gets easier.

I left my 12 hour midnight shift after my last CT to stop by the hospital medical records department for the scan report. I was in the medical records department in the basement; heart pounding, hands shaking waiting, waiting for my reports. It never gets easier. I heard the reports being printed. I asked, then, with trembling hands, to see the scan results. Then they told me I needed first to pay 25cents per page. I only had a few nickels and pennies in my purse, no green money, and a debit card. They didn't accept debit cards. I was trying to decide which single page I could afford....maybe just the end page with the "impressions". But they weren't going to give me the report until I paid in full ($1.25).

I told them I was a cancer patient and the words on those papers would let me know if my cancer had come back, if I could plan my future. They were important to me. I was almost in tears (heart still pounding, hands shaking). They finally told their staff to give me the report for what pennies and nickels I had, they would be enough.

There were no masses, no tumors noted on the scan. Whew.

We need to develop tools to deal with scanxiety. Distractions work well, I'm sure to schedule long shifts at work while waiting for my scan results (12-16 hours). I keep amazingly busy after a CT scan, I find that helps a lot. I keep people around me; do things that require my brain to think of something else. An absorbing novel is good too.

I’m not good at waiting anxiously for a week or two for a doctor’s appointment to find out the results, so I get my own results from the hospital medical records department as soon as I know they are available (usually within 48 hours). You can do that…they are yours. You just sign a release.

I've learned to schedule CTs on Fridays and to go pick up the results at the hospital medical records office on Mondays. Then I don't worry about hang up phone calls as on weekends as I know offices are closed and results still being typed up, so I don't have to worry that someone hung up as they couldn't leave the bad news on the answering machine as it would violate HIPPA law.

Of course, as one patient in the article said…”Ativan is wonderful, at least you can sleep”.

Maybe one day, as they have done locally for breast cancer patients at a hospital near me, they will have CT scan reports available at the time of testing. We'd still have scanxiety, but only for minutes instead of days and weeks. A breast cancer patient told me once about the terrible anxiety she felt during the 10-15 minute wait for her mammogram result. All I could think of was what I would give for ONLY a ten minute wait.

My Silver Lining

2009-05-20T21:42:00.009-05:00

I was reading the comments to my last post. Thank you Barney, Karen and Wendy. Nice to "meet" you Barney, I'd "met" Karen and Wendy before, they are people I am so glad to know and who inspire me.

I loved Wendy's poem....and could relate. We all know the dark clouds; we all struggle with uncertainty, lack of control and our loss of innocence post diagnosis, the scares, the anxiety of waiting for scan results. But she’s right, there are silver linings we can find when we look.

The silver lining in my own cancer experience has been the people I've met who have also been diagnosed with cancer and who have shared their lives and thoughts with me on our common journey. I've felt that I am not walking alone. We are family in a sense. I looked up the definition of family, it includes "a group of people united by certain convictions or a common affiliation: fellowship, a group of things related by common characteristics”. One of the things I've learned as I grow older is that family to me encompasses much more than just those who are genetically related to me. To me family are also the people I connect with and share my life with, to that end I belong to several families that are all just as important to me as my genetic one.

I loved the book "Dancing In Limbo", not because it gave me the answers I was seeking, but because when I was going through a difficult time it helped me know that I wasn't neurotic, that the feelings I had were shared by many others in the cancer community, that the uncertainty and "limbo" I was feeling was normal in the cancer community, even many years out.

I loved that in the comments to my last post, the word "exhausting" was used in relation to trying to live every day to its fullest and to make the most of every moment. It is an exhausting way to live, though I'd never heard anyone else use that word, it is so appropriate. I didn't realize how much fun assuming and planning for a future was until I was put in the position of not contemplating a future. I miss feeling okay about wasting an entire day doing mindless and non-productive things.

My heart so goes out to Karen, I so relate to her comment "I've discovered I have created a mask that I wear most days - I go about disguised as a person with a future, even if inside, I doubt there will be a long one. I'm getting to be a pretty good actress. Some days I can even fool myself." I've done exactly the same thing before, worn the same mask.

And Karen, you and I received the same dismal prediction for the same cancer and same pathology; we were also both Stage 4. So I know how hard it is to live with that sense of impending doom and likely recurrence. I am proof it is possible to defy the odds, though I didn't really start feeling less vulnerable until maybe the 6th year cancer-free. At seven years I felt even less vulnerable, then at 8 years, I had pelvic symptoms just about the time I heard from an 8 year appendix cancer survivor just diagnosed with an aggressive recurrence. I can tell you, while the sense of living in "limbo" never fully goes away in ("Dancing in Limbo" they found that even long term survivors continued the sense of living in limbo), the limbo does become less prominent with time. I still don't take the future for granted and don't feel totally "safe", but I feel safer than I did the first several years. I now can say "next year", I can plan (though tentatively) for the future. I even sometimes contemplate going to grad school. I plan vacations. I put money toward retirement, but not with the certainty it will ever be of value to me. It's more for "just in case" I reach old age. But I don't have the before-cancer innocence and never again will.

Barney, I know another person who is post appendix cancer diagnosis while struggling with bipolar disorder. I know your road is a very tough road.

I've found that some of the things that have been so difficult for me as a cancer survivor are less so when I know someone else shares my experience, understands and can relate. I love a saying I heard once that difficulties are lessened and joy multiplied when shared. In that sense I think the best thing we can do for ourselves as cancer survivors is to connect, support and empower others in our community, in our "family". I am looking for ways to make that happen.

Survivorship

2009-05-18T23:08:00.012-05:00

I'm going to take a bit of a chance here, to say some things that might not be understood or appreciated by some. But I want to be very honest, I want to say some things that from my perspective I don't hear verbalized much by those within and outside of the cancer community. I love what I've heard and truly believe...that if you have a question you are afraid to ask, there most likely are others who are also afraid to ask the question and who are relieved when someone finally verbalizes it. So I am guessing I am not alone in what I think and feel as a cancer survivor. I'm guessing there are other cancer survivors who feel the way I do but who are afraid to verbalize it.

Here goes.

My last post was about the gratitude I feel in having survived for 8 years. The gift it has been for me to be here to complete my job as a parent, to have raised my kids to adulthood. I know I am truly blessed. I know many who have lost their battle with appendix cancer, who have left young children behind. I am truly grateful to be alive still.

Sometimes, though, I feel we as survivors are expected to always stop to "smell the roses", to be thankful for each new day, to live a fuller life, to always have an attitude of gratitude, to always feel blessed. To make more of our lives than those who have not traveled our journey. We are expected to appreciate our lives more than those who have never been diagnosed with a life threatening illness, to be happier, more thankful.

But that expectation is sometimes a burden. Sometimes, I truly envy those who have never had a cancer diagnosis. Who are like I used to be. Who have never had to beg and plead and pray for more time, who have never had to feel the vulnerability we feel with every cancer test, who haven't had to contemplate their mortality at every level on a daily basis, as we have. I envy people who live like we used to, planning and taking for granted a future; old age, retirement, children's weddings and grandchildren. Those of us with a cancer diagnosis have lost the luxury of assuming a future. I miss the days before cancer when I didn't feel so vulnerable. Life was easier when rightly or not, I took my future for granted.

As a nurse prior to my diagnosis I'd seen death and disease and unfairness for many years. I knew on an intellectual level that life was short, that anything could happen, that we would all one day die. I knew we were all terminal. But that intellectual understanding was different than the up close and personal contemplation of my own demise following my cancer diagnosis. Facing death and vulnerability on an emotional level when the threat is real and lasting, as it is after a cancer diagnosis, is different. It's a tough way to live. Everything changes, forever, after cancer.

Many of us post-cancer live one day at a time. And in reality, living one day at a time is a difficult way to live. I never realized how much of our lives involved contemplating the future until I was unable to contemplate my own future. For a long time after my diagnosis I couldn't commit to anything that referenced a future...dentist appointments, vacations, home improvement projects. I couldn't even say the words "next year"; that implicated a future I no longer could envision...I was living one day at a time, living in cancer limbo. Even as long term survivors, the years of ongoing cancer testing reinforce the reality of our limbo.

I guess sometimes I resent that we are expected to live life more fully, to appreciate life more, and to be more grateful for life as a cancer survivors....that as a survivor of a deadly disease we are held to a higher standard of gratitude by many. Sometimes I feel as though we are not entitled to waste time, to be non-productive, to be angry, to be depressed.

I think those who have never had their future and their health threatened should feel ever so much more grateful than we are expected to feel, though. Those who have always been healthy should at least be held to as high a standard.

I was ever so grateful someone had identified and put into words exactly how I felt in the book "Dancing in Limbo: Making Sense of Life after Cancer" (pp. 1):

"There is a cruel myth about surviving cancer. In this myth, when medical treatment is successful, the story ends. Having survived cancer, we pick up our lives where they were interrupted and carry on- with increased gratitude for the simple acts of daily life and clarity of purpose that only a brush with death affords. In this myth, cancer is a blessing in disguise.Though this myth has some truth to it, it is cruel because it is impossible to live. The real story does not end "happily ever after" Instead we live in limbo: after cancer, we know we are on uncertain ground."
.

I have been in the cancer community for 8 years now. I've communicated with hundreds of cancer patients. All of them struggle emotionally. All of them struggle with living with the uncertainty, many struggle with depression. I've talked to some who have even contemplated suicide as survivors, unable to live with the ongoing uncertainty, the ongoing vulnerability with each cancer test.

Fighting cancer is hard. But surviving cancer can be difficult too. Living up to the standard of survivorship is sometimes very, very hard.