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

Thursday, October 29, 2009

Test Stress!

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.

Tuesday, October 27, 2009

Attitude!

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.

Tuesday, October 13, 2009

Thank You CR Magazine!

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.

Sunday, October 11, 2009

Being Your Own Advocate

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.

Sunday, October 4, 2009

Survivor Seasons

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.