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, December 27, 2007

Testing.......

I was feeling just a bit unsettled today, I have another pending CT scan. I've had that on my mind for awhile. The requisition for the scan has been on a bulletin board in my room waiting for me to schedule it.

Even 6 1/2 years out, CT scans make me uncomfortable. CT scans make us all feel vulnerable, they keep us in limbo.

I'm in the cancer community now and talk to cancer patients daily. I am familiar with cancer recurrences. I have relationships with people who are dying of cancer. Cancer is a sneaky and vicious disease. Once in awhile I hear of a cancer patient who has a recurrence after 5 years. I know too much to become too complacent about cancer.

My doctors keep checking...and checking...and checking my tumor markers. They've been checking them every few months for years now. Just now one is elevated, just a bit, for the first time. So I decided to go ahead and schedule the scan.

It seems no one uses the "cure" word nowadays, we are in "long term remission". That phrase makes it sound as if we still have cancer, that it just isn't active at the moment......implying that it can recur at any time. Implying that we can never move beyond oncology appointments and cancer follow-up testing.

It isn't as bad for me as it used to be. I used to be terrified of impending CT results. But CT scans still make me edgy.

I hope someday someone will use the word "cure" in regards to my cancer. That I will be able to stop being tested for cancer. A friend of mine is 83, she survived colon cancer diagnosed at age 40. She just quit her annual colonoscopies at age 80. Forty years of annual colonoscopies.

The testing goes on, and on, and on.....

Monday, December 24, 2007

Christmas Milestones

I think reaching the milestone of my daughter's 18th birthday has made me appreciate other milestones. This year I truly appreciated Christmas Eve with my husband's family...my family.

It was 22 years ago when I celebrated Christmas Eve with them for the first time. I felt a little bit overwhelmed then. I'd come from a family where it was just mom, dad and the kids for holidays in our home. Quiet, dignified celebrations.

My husband's big Polish family has always celebrated Christmas on Christmas Eve at his parent's house. Lots of people are there.....his parents and all of their kids and their grandkids, now even the grandkid's kids--and all of the spouses. Anyone else who happens to need a place to celebrate is welcomed too, even if they are no relation at all. Tons of food, tons of decorations, Santa comes, the kids sometimes do skits, sometimes you have to sing a Christmas carol to the crowd before Santa will give you your present, sometimes there's a white elephant giveaway. Kind of corny stuff. Kind of loud, kind of overwhelming. At least it was for me the first many years I spent the holiday at their house. It took me some getting used to.

But this year was my 22nd Christmas celebration with them. I don't feel like an in-law anymore. I am a daughter and a sister, "in-law" doesn't seem to apply nowadays. I kind of appreciated the corny stuff, the crowd, the overabundence.......and even the noise.

I talked to adults during the evening who now have their own small children. I remembered these same adults as toddlers when I first met them 22 Christmases ago. My husband and I were not yet married and I had no children the first time I spent the holiday with them. Two children and a few adults have died since I've been a part of the family. I remembered those who were not there this year especially.

This year I truly celebrated all of them who have become a part of my life over the last few decades. I celebrated the life changes we've all shared through the years, the support they have been to myself and to my own family, the support I hope I've provided to some of them.

They've started something new this year, Sharing the Oplatek, a Polish tradition. White wafers, like those used for Holy Communion, are shared with each person present. We all broke off a piece of each other's wafer as we wished each other a Merry Christmas. It was really a sweet moment.

This year especially I felt truly proud to be a part of the history of this family, to belong and to be a part of their lives and their traditions. I appreciated that I've had all of these years to share with them. All of the milestones.

Thursday, December 13, 2007

Celebration!!!!!!

I am so happy, so excited and so grateful. My eldest daughter turned 18 on Tuesday. I can't begin to tell you how great that felt. It was a huge landmark for both of us.

I felt like celebrating that whole day from the moment I woke up, even when she was in school. I spent the day reliving all of the phases of her life in my mind, reviewing my mental photos of her as an infant in a carrier, as a two year old, a preschooler, attending grade school, junior high school, first time driving a car, first date, first boyfriend, first professional concert and now her senior year of high school. I got to be here for all of that.

I was diagnosed with stage 4 cancer when she was 11 years old. I was not expected to survive. I was not expected to see my kids grow to adulthood. My prayer then was to live to see both of my kids reach 18 years old and graduate from high school. It's a very common prayer of women diagnosed with cancer when they have young children. We all pray for the same thing.

I just wanted to be here to support and love my kids at least until they reached adulthood. At least until they were ready and able to begin their own lives independent of me. An eighteenth birthday was a very long way away then, living that long was a tall order.

But we made it, both of us. What a gift. What a cause for celebration. What a miracle.....

Saturday, December 8, 2007

Death on my doorstep

I've recently been dealing with death on several fronts.

I just traveled to Texas and met for the first time a young woman I've communicated with for over a year who had my same type of appendix cancer, signet ring. She died of the disease just hours after I finally met her. When I came home my "adopted" son was talking to me about the father he loves and misses but has no memory of, his father died in an accident when he was only 3 years old. Another 88 year old friend of mine died this week, and another appendix cancer patient I communicate with lost a family member in a car accident this morning, the victim left behind a one-year-old daughter.

But learning of these deaths has not made me terribly sad.

The 88 year old woman outlived her husband by thirty years and outlived all of her siblings. She lived alone, her only son lived in another town. She'd had two hips replaced, had a pacemaker, and had been injured once recently in a home fall while climbing a ladder to change a light bulb, but she always proudly maintained her home and her independence. Her house was always full of green plants, she was always crocheting and tatting gifts for people, she loved to do jigsaw puzzles, and she had lots of us who loved her and loved to be around her. She had more wrinkles than I'd ever seen on a face, but she had a contagious joy about her that she passed on to everyone who saw her, even those who spent just a few minutes with her. She was special and had inspired me for years.

My "adopted" son answers some questi0ns for me.......my biggest struggle is understanding why those who are raising young children are taken from this world, why some don't live long enough for their children to even remember them. But my son knows of and loves the father he doesn't remember. His dad still influences his life in a positive way, and because of the father he misses, he is a more loving, caring, sensitive and spiritual teen than most I've met. He's one of my favorite people to be around. I'm sure the loss of his dad has played a big part in who he has become.

The woman who died of appendix cancer had been in pain, she was young, but I know she is home too and no longer suffering. She's forever done with CT scans and labs and chemo. We'll have a lot more fun the next time I meet her.

And I don't understand why the young mother was taken, but I have to believe there is a plan, and it truly enhances what I already know, that none of us is promised tomorrow. Today is what counts. Just recently this woman was helping an appendix cancer patient recover from major surgery feeling sure of her future. But she was a physician, I'm sure she knew that futures on this earth are fragile. All of us who work in health care know tomorrow is tentative.

Being a cancer survivor and being in the cancer community for several years has really made death seem less scary and less unfair to me, though. It truly seems to me now an integral and natural part of life. Understanding in every sense that my time here is limited now, I use my time much more wisely.

And I have developed a strong faith that when I am done here, I will finally and truly go home. Sadness for me is always now tempered with hope.

Monday, November 26, 2007

Thanksgiving

I guess I should have posted this when it was the holiday, but I worked the holiday and weekend so didn't think of posting then. I also went to see the Chicago Symphony Orchestra directed by John Williams with my daughter followed by a night in a Chicago hotel after the holiday, so it wasn't all work, it was also some play that delayed this post!

I am thankful for so many things. I'm thankful for the family times I am able to share with my husband and kids. I'm thankful I am here to watch my kids grow up. I am thankful for my health. I am very, very thankful to be an almost 7 year survivor of what some call "the kiss of death", signet ring appendiceal cancer.

But what I am especially grateful for is the opportunity and purpose my survival has offered me. I struggled as a survivor for a long time not so much with survivor guilt as with an obsessive need to find purpose in my survial. I drove my best friend and a few others nuts when I incessantly talked about needing to find purpose in my life.

When I finally made the decision to muddle through creating a web site, I never knew, I never thought for a moment of the gifts I would be given in return, the people I would meet as a result. I never anticipated the purpose I would realize as a result of my having had cancer. So many of you who have contacted me have inspired me greatly and given my life a new meaning. I'm sure this sounds strange to some, but I wouldn't go back to my before cancer life if I could now. My life is so much richer now than it was before cancer.

I thank all of you I've met while on this journey, you've all enriched my life and given meaning to what was once a very tough journey.

Tuesday, November 20, 2007

Fear

Having a cancer diagnosis and living with it for a long time puts a new twist on fear. I have new fears I didn't have before, and I no longer fear things that used to incite me to trembling.

I have no fear of flying at all. A little turbulence is fine. Now I know we'll all die sometime, and going down in a plane crash doesn't seem so bad when you consider the alternatives. Death is just gate from this life to the next; a shorter, less painful transition would be better. With a plane crash, there is a much less lengthy period of time in which you contemplate your demise. A few seconds of terror and then it's over before you can even feel any pain. I don't fear massive heart attacks for the same reason.

Stage fright. I no longer have stage fright. I used to be nervous about playing piano publicly, I was also a little nervous about public speaking. No more. When you first get a cancer diagnosis and you really have something to fear, all other fears pale in comparison. What's the worst that can happen playing piano publicly? Forget a note? Have to start a song over? Someone might hiss or boo?

I don't worry about meeting a bear when I backpack, though I do worry a bit about getting lost. My sense of direction is really poor and I don't want to have to hike hungry while I try to find my way back to a trailhead.

I don't worry so much about people I love dying, they'll just go on ahead of me, I'll catch up with them later. I view life from an eternal perspective now...though I can't imagine not being able to share my life with my husband and kids.

But I have new fears I didn't have before. Fear of living a purposeless and meaningless life. Fear of not making a difference in the time I am allowed on this earth. Fear of wasting time. Fear of not appreciating the gifts I've been given, of not appreciating the beauty that surrounds me, of not appreciating enough the people who have come into my life from so many different places. I don't really care how long I'm on this earth anymore, though I'd like to be able to finish raising my kids to adulthood (I'm almost there!). I just care that I use my time and my life here well, that I make a difference.

Tuesday, November 13, 2007

Grieving the loss of "Normal"

In 1969 Elizabeth Kubler-Ross published her classic book, "On Death and Dying". I was required to read it as a class assignment in nursing school. The book outlined the five stages of grief and loss of someone who is dying. In later years, these stages of grief and loss became known to be associated with other types of loss.

I talk to so many who tell me that the day of their cancer diagnosis was the day their "normal" life ended. I've recognized these same stages as we grieve the loss of our "normal" lives after a cancer diagnosis. I think many of us have gone through these stages as we've relinquished our before-cancer normal lives. I know I did.

Denial and isolation: "This is not happening to me." We feel detached, we can't assimilate the reality that we are now cancer patients. It was so unreal the first time I sat in an oncologist's waiting room knowing that though I felt great, I was now a "cancer patient". I was a cancer patient just like the bald person across the room. Just like the very thin and sick-looking person across the room. I was one of them, a cancer patient.

Anger: "How dare God do this to me." I never felt "Why me?", but I was angry sometimes that people I knew who abused their bodies, were abusive to other people and who were just plain mean lived to old age without having any severe illness threaten their lives. And I knew good, faithful and God-honoring people who died of cancer and abandoned their children. I saw kids with cancer. I was angry at the unfairness of it all, the injustice.

Bargaining: I'll eat right, I'll do chemotherapy, I'll do surgery, I'll quit smoking, I'll exercise...just let me live long enough to raise my kids. I just want to see them graduate from high school.

Depression: I am so sad, I feel horrible at the pain and worry I am causing those I love, I'm afraid of the future, I'm afraid of tomorrow. I'm so sad.

Acceptance: I'm here now, at acceptance, but it was a very long and hard road. And I guess since I've almost achieved what I'd "bargained" for, maybe it's easier for me than for others. I've been in the cancer community for over 6 years now. It can be a place of brutal reality, of fear, of sadness, of anxiety. But I truly accept now that there is a purpose for all things, even the bad things. I accept that every day is a gift and that none of us are promised tomorrow. I accept that we need to make today count. I accept that God's answer is "no" to many prayers. I accept that there is much I don't and can't know from my perspective in this here and now.

But I feel with certainty that this here and now is not all that there is. I know there is much more beyond this life. I accept my life as tentative in this realm, but I know this is not the only realm. I accept all of the grief and goodness this life has to offer, but I anticipate another reality after this one where we are whole, where we can understand, where everything makes sense, where there is no grief. And now I very much look forward to that reality. For me that is the greater hope...greater than the hope of surviving my cancer.

Thursday, November 1, 2007

Hope

Many of us diagnosed with appendix cancer find hope to be very illusive, at least at first. There's not a lot of disease information available, and many of the published survival statistics aren't great.

Cancer for years was a word associated always with death. Now, though, there are many survivors, 10.1 million in the USA this year.

I smile as many times I am asked what chemotherapy I received. Interesting thing is that the best chemotherapy I received had been approved by the FDA only months prior to my being diagnosed....it was kind of my great white hope. Now it's old news and a second line chemotherapy for our disease, it was replaced by something better in 2004 (Oxaliplatin). Also available now that hadn't been approved when I was diagnosed are the anti-angiogenisis drugs like Avastin.

I just read a list of new drug therapies approved for use in the treatment of cancer in the past 10 years and quit counting when I hit 100. And those are just chemotherapy drugs. Research is ongoing into immunotherapy and to fighting cancer on so many other different fronts.

I have been a nurse since 1982, and have seen so much change in medicine.

In the early 80s when we dealt with AIDs patients and not much was known about the disease except that it was universally and rapidly fatal, we dressed in isolation "moon suits" as we called them when entering an AIDs patient's room. Now AIDs is treated as a chronic disease and we use only routine precautions with body fluids. I'd hug an AIDs patient now without thinking twice. AIDs is no longer a death sentence with current treatment.

I spend a lot of time working with the elderly population, and an elderly woman told me that when she was a child people wouldn't walk on your side of the street if your child had scarlet fever. Both of my children have had scarlett fever. They returned to school after 24 hours on antibiotics, just another strep infection. But cemeteries are filled with the gravestones of children who died of infectious diseases before childhood vaccinations and antibiotics were used. Amazingly, the antibiotics we so take for granted weren't available before 1940. Polio vaccines only became available in 1952.

Read this article, from Reader's Digest in 2005, we are making great strides in cancer treatment: Winning the War on Cancer
Medicine changes all of the time. I communicated with a woman who was diagnosed with cancer, had a recurrence and went through the whole thing again, she is now a 13 year survivor. Even a recurrence may not be a death sentence. I know of several who have not been cured of cancer but who have dealt with cancer as a chronic disease for many years while they've lived full lives, in some cases for decades.

My very favorite author was a biologist and physician, Lewis Thomas. At one point in his life he was the president of Sloan Kettering Cancer Center. As a child in the early 1920s he followed his physician father as he made his rounds. Even in the 1920s and 30s he said the most his father could do was diagnose, prognose and prescibe medications that were mostly alcohol or narcotic based... he could only tell you what illness you had, how long you'd be sick (or if you'd likely die) and make you more comfortable as you hoped to recover on your own with the help of chicken soup. He really couldn't offer treatment or cure for medical illnesses.

Look at us now, less than 100 years later. As states the title of Lewis Thomas' book, western medicine is "The Youngest Science". We've come a long way in a short time.

I think one day we'll see a cure for cancer. Maybe soon.

Thursday, October 25, 2007

Appendix cancer patients and the general public

Since publishing my web site and contact information in May of 2006, I've communicated with almost 300 people diagnosed with appendix cancer.

There are some things we with appendix cancer are commonly told by those in the general public who learn of our diagnosis. These statements are common ones that have frustrated many I communicate with.

  • "I've never heard of appendix cancer, but it can't be too bad, can it? I mean, don't they just remove your appendix? You don' t need your appendix anyway, you'll be fine!"

    I tell those people it's similar to ovarian cancer in that by the time there are symptoms and it is discovered, we usually have advanced cancer, it has spread beyond our appendix. We are usually diagnosed at Stage IV, the worst case scenario for a cancer diagnosis.

  • "Let's celebrate, you've recovered from surgery and finished chemo! Now you can go back to your normal before-cancer life , the tough part is over!

    Actually for most of us, after surgery and after chemo is when the tough part really begins. Those around us don't understand that, at first even we don't understand why we aren't happy and feeling great.

    Chemo and surgery were our tools against the enemy, cancer. Now we are vulnerable and afraid, we know how quickly our lives can change and we don't trust the future anymore. We don't know if cancer is hiding and waiting to attack us again while we are defenseless.

    We are kind of in an after-hurricane state. During the storm we fought and struggled and worked to survive, now we are surrounded by the aftermath of the storm, the scattered pieces, the need for reconstruction. We don't know if and when another storm may hit and we can't move to a new state where there are no hurricanes.

    In many cases, weathering the actual storm was easier, the clean-up is the hard part. And as in the aftermath of real hurricanes, the clean-up can take years.

  • Another sort of frustration many of us have is listening to others say how lucky we are to have received treatment, to have not died of our cancer, to have survived the surgery, survived the chemo. We are expected to be happier, more humble, to have more gratitude, to value our lives more, to appreciate living more than those around us. Aren't we the luckiest people in the world?

    It reminds me a bit of the book "Lucky" by Alice Sebold. Alice was raped, but was told she was "lucky" to have only been raped and not to have been killed. We are "lucky" to have not died of cancer. As Alice recounts in her book, many of us struggle with emotional issues long after our "lucky" incident.

    The truth is, sometimes we wonder why those who have never experienced cancer-- those who have never had to fight the battle-- don't hold themselves to that same standard, or actually to an even higher one. They've received all of those same blessings without having to struggle or fight or face the storm. They are truly the lucky ones, the blessed ones, we often feel.

It's not that the people around us don't want to understand or try to help, it's just that in some ways they can't relate to us as they haven't been where we are. That's why those of us in the cancer community need each other. My offering my web site to the world has had the great benefit of my being able to give support, but also of my being able to receive support from others diagnosed with this cancer. It's been great, I thank all of you.

BTW, the color for the appendix cancer ribbon is amber (for those who write and tell me how tired they are of seeing pink ribbons :-). One woman I communicate with wants to start making amber ribbons, and if she sends a bunch to me, I will mail them to anyone who asks for free until they run out :-).

Saturday, October 20, 2007

Coping Mechanisms

This may be a little bit off topic, I'm not sure, but I was thinking tonight of coping mechanisms.

All of us with a cancer diagnosis have the same feelings at first..shock and numbness at the reality of what has happened, then fear at the potential for all we have to lose...the people we love, our futures, our dreams, our hopes, our homes, our routines, our aspirations....so much potential loss faces us all at once. Then we do the frantic search for information, for hope, for survivor stories, for surgeons and facilities and doctors who know what to do with us.

Cancer envelopes, surrounds and overwhelms our lives and who we are. Cancer owns us, at least at first. I remember after a few months in the cancer battle wanting to run away, to take a vacation from cancer. But everywhere I went, my body went...my body with cancer growing in it. There was no escaping cancer, cancer went with me everywhere. I couldn't hide. I couldn't leave the cancer behind, it was a part of me.

My best coping mechanism and greatest form of expression before cancer had been music. I started taking piano lessons for the first time when I was about 30 years old, it was something I had wanted to do since I was 5 years old. Once I learned to improvise popular music, I loved to play. If I played for a few hours at a time without interruption, I was transported to another place, my "zone" that wasn't part of this world.

My other great spiritual escape is nature. The beauty, perfection, symbiosis and simplicity I find when I am alone in the woods also takes me to a healing "zone" away from my normal world.

At some point after our spirit recovers from the shock, and we need to indulge ourselves in our best coping mechanisms, the ones that sooth us to our core. Music and nature were and are my best coping mechanisms. I'm sure others have different ones.

Before cancer I didn't view those things as essential to my well being, now I do. I need the peace they give me as much as I need air and food. These things heal my spirit, and I think that helps keep my body whole. I play piano publicly usually several times a week now, and since cancer I've taken up backpacking and have hiked short trips in the wilderness in four states in the past year.

Make the time!

Monday, October 8, 2007

Emotional Survival

After my diagnosis, surgery and completion of chemo, I went away with my husband and kids to a lodge we frequented for a weekend every winter. At the time I was living between CT scans. My life expectancy still seemed up in the air. The cancer might recur and require more treatment, or it might return and not be treatable. The cancer might even be still for awhile....only to explode later. I never knew. Any pending CT scan result was a potential terminal diagnosis.

I found a book in the library of the lodge that intrigued me. The title was "Saved", it was written by William Hoffer. It documented the rescue of those who were on the fateful voyage of the Andrea Dori, an Italian passenger ship carrying 1706 that sank after being struck by another ship in a dense fog in 1956.

Many died. Many were saved.

What most intrigued me though, was the epilogue. Many who were saved suffered an emotional aftermath that lasted a lifetime. They'd faced death and survived, but their lives were forever changed. One woman experienced severe depression on the anniversary of the collision every year and at age 51 suffered a fatal stroke on the very day the accident had occurred, the very day she had been "Saved".

This week I've received several emails from appendix cancer patients who were "saved" by extensive surgery and chemotherapy, but who are struggling emotionally. And I so understand their feelings and struggles, their struggles were, and are even now sometimes, my own. Unlike the survivors of the Andrea Dori, some of whom chose never again to go near the water, we can't walk away and forever leave the scene of the trauma. Our feelings of vulnerability linger. We revisit the scene of the trauma with every CT scan, with every tumor marker test, with every visit to our oncologist. In a sense, it is never over for us, we always feel vulnerable.

A survivor recently told me her diagnosis and surgery felt like an earthquake combined with hurricane Katrina emotionally. She wonders if peace of mind will always be elusive. Will she ever feel safe again? Will her life ever be "normal" again?

Many I communicate with are treated with antidepressants or see therapists and counselors. I applaud them. They recognize they are struggling emotionally and seek help. They are not too proud to say they need help with the emotional trauma we all experience.

We understand the post traumatic stress and issues soldiers experience when faced daily with death and loss. We accept and encourage them to seek treatment for their emotional turmoil. We need to seek and accept help for ourselves and to address our own emotional health needs.....we have long been in battle and fighting a war of our own.

Our emotional recovery is just as important and significant as our physical recovery.

Saturday, September 29, 2007

Phytochemicals- My Complementary Therapy

I am much the same as Graham Davies , who posted a comment to my last blog entry (thanks Graham!). In part he said:

"I am sceptical about alternative and herbal remedies, although I recognise the fact that some naturally occurring chemicals are believed to have a positive effect. For that reason, I drink green tea and red wine, and I eat quite a lot of garlic, broccoli and dark chocolate. Regardless of whether these foods are beneficial or not, I like them anyway, so I can’t really lose, can I?"

For over 30 years it has been known that a diet high in fruits and vegetables is protective against certain types of cancer and heart disease. New compounds naturally occuring in plants have been discovered, these compounds are called phytochemicals. Thousands of different types of phytochemicals have been discovered, more are being discovered all the time. Phytochemicals provide plants with color and flavor, but also protect plants from microbes, insects and oxidation (they are antioxidants). Phytochemicals offer many protective benefits to plants. It is believed they also provide protective benefits to humans and help explain the health benefits of a diet high in fruits and vegetables.

Phytochemicals also seem to work best in combination with each other. The more colorful fruits and vegetables are rich in phytochemicals. A single orange has 200 different kinds of phytocemicals. Green tea is rich phytochemicals. These substances are not produced by our bodies and must be consumed in food. Once consumed they only stay in our bodies for a day or two.

Of course, when the protective benefits of phytochemicals became known, companies immediately began to investigate creating phytochemical supplements in pill form. But no one knows which are the most beneficial phytochemicals and in what amount and in what combination they are most effective. And how many pills would be required to provide the amount of phytochemicals in one serving of a particular fruit or vegetable? Would processed or artificially created phytochemicals still be as beneficial as those found in fresh fruits and vegetables? Those questions have not been answered.

This is a link to an article by Ohio State University regardiong phytochemicals, it's worth a read: Phytochemicals -

Phytochemicals - Vitamins of the Future?, HYG-5050-98

I eat a lot more fruits and vegetables and do now buy green tea- that is a change I've made in the sense of complementing my medical therapies. It's easy, relatively cheap, and can cause no harm. It also gives me an excuse to buy some of the more expensive fruits and vegetables I love, even when they are out of season. And now my family and I go blueberry and strawberry picking almost every year!

Saturday, September 15, 2007

Holistic Medicine

As an addendum to my last post, I would like to express my thoughts in regards to holistic medicine. I am a big proponent of holistic medicine.

Holistic medicine in my view is the pursuit of optimum health in all aspects: physical, mental, emotional, social and spiritual. It's about balance and overall wellbeing, not just physical health and comfort.

A cancer diagnosis effects one's health in all of these areas, our bodies are sick, we are mentally overwhelmed, we experience a roller coaster of emotions, our social lives are turned upside down and if we haven't already, we truly start to explore our spiritual lives. Medical care in a physical sense only deals with one aspect of a cancer diagnosis. And I do believe that for the best outcomes, we need to work to achieve optimum health in all areas, we need holistic therapy.

While I don't believe in the extremes of "my repressed thought caused my cancerous tumor" (a notion that can carry with it overwhelming unhealthy guilt), I do believe that when all areas of our being are in optimum health, we will have better outcomes. Inner peace and wellbeing does help our body function better, it can have a positive effect on our appetite, our sleep patterns, even the functioning of our immune systems. I am fascinated by the relatively new branch of medicine that deals with how our mental state impacts our nervous system and hormonal systems, psychoneuroimmunology. It's an evolving field I am closely watching.

For purposes of clarification, complementary therapies are therapies that complement traditional medical care. So if I used an herbal remedy in addition to my chemotherapy, it would be considered a complementary therapy.

An alternative therapy is one in which a therapy is used instead of, or as an alternative to, conventional therapy. So for example if I used an herbal supplement instead of chemo, it would be considered an alternative therapy.

A good site to check out in evaluating complementary and alternative therapies is the US National Institutes of Health site:

National Center for Complementary and Alternative Medicine

I've tried to and hope to continue to make my web site "holistic", hence the addition of some of the reading material, the blog, information about hospice and discussion of the emotional aspects of diagnosis and treatment. I hope to add more about nutrition and support groups and other supportive services as my site evolves. Suggestions are welcome and appreciated!

Friday, September 14, 2007

Did I use alternative and complementary therapies?

I am often asked by those newly diagnosed if I added anything to my medical care in the sense of natural, herbal or alternative remedies. Maybe this is a long answer to a short question, but here goes:

I have always as a medical professional been biased towards documentation in sound medical research. I've been skeptical of most media reports of fantastic or miracle cures.

All herbal remedies are required in the US to be labeled as dietary supplements (not medications as they are not subject to FDA scrutiny as medications for effectiveness and purity). Statements herbal remedies make regarding health benefits must have the disclaimer "These statements have not been evaluated by the Food and Drug Administration . This product is not intended to diagnose, treat, cure or prevent any disease".

Many herbal remedies do interfere with the effectiveness of prescription medications. St. John's Wort would have reduced the effectiveness of my particular chemotherapy by 40%. My nursing drug handbook now has individual listings for drug/herbal interactions, not just drug/drug interactions. They are not harmless.

I refer those who want more information about an herbal remedy to Memorial Sloan-Kettering Cancer Center's site:

About Herbs, Botanicals & Other Products

Another good site that helps you evaluate claims of miraculous treatments is Mayo Clinic's:

Complementary and alternative medicine: Evaluate claims of treatment success

But back to answering the question- did I use any complementary or alternative remedies?

I did try visualization- picturing my white cells destroying my cancer cells- for about 10 minutes. I did try to eat more fruits and vegetables and to just eat healthier food in general, though I still ate occasional fast food burgers and fries. I did some distance biking, even while on chemo, as much for stress relief as for exercise. I ate sugar, and after my cytoreduction surgery when I was underweight for awhile I ate lots of desserts in an attempt to regain the weight.

I did pray more and tended to my spiritual side more.

But I don't believe repressed negative thoughts caused my cancer. I don't believe that thinking only happy and positive thoughts cures cancer or prevents it from recurring. I don't believe my cancer was a punishment. I didn't use Barley Green, I didn't use any herbs, I didn't eat only organic food, I didn't become a vegan, I didn't do yoga. I did quit smoking cold turkey, which was very difficult. I took multivitamins.

I did at times feel an urge to try some of the alternative methods, I think more to feel I was doing something, anything, to have some sense of control after I completed chemo. But I never succumbed to that urge, maybe out of laziness as I would not have used these therapies unless I'd researched them extensively for safety and effectiveness.

I did seek out the best medical care available to me at the time for my diagnosis based on the documented research available then. I think that was the best thing I did for myself.

Monday, September 3, 2007

Reinventing my life

I am at a kind of new crossroads lately. And I like it. I'm approaching 50 years old. I'm also approaching an empty nest, which I will celebrate as it will mean I've lived long enough to complete my greatest and most rewarding goal to date, raising my kids to adulthood.

I don't take tomorrow or a future for granted. Cancer and an initial terminal diagnosis changed my outlook on almost everything in my life drastically. I've been living one day at a time for about 6 years now. I haven't made many commitments to the future in the past several years. I've been timid about approaching tomorrow for a long while.

But I found myself a few nights ago enjoying planning my life beyond right now. I started to dream a bit, plan a bit for the future, construct goals. I know the future can change at any given moment, but I decided to make plans anyway. I even started thinking about maybe going to grad school.

My best friend, who seems to always be on my same developmental path, recently bought me a book as a gift (we are close enough that a used Amazon book delivered to my home still counts as a gift). The book was "Inventing the Rest of Our Lives: Women in Second Adulthood"..."what matters, what works, what's next". It is about women between age 40 and 50 who are getting a second wind, who are redefining their lives and goals and ambitions. Who are learning to let their kids pursue their own lives and goals and who are giving up the need to always be involved and needed by children who now want independence. Women who are beginning a new journey.

I see lots of them now- going back to school to pursue career changes, giving up long-time careers and positions of status to do what they find more fulfilling, moving to other parts of the country. A middle-aged accomplished biochemist I know recently quit her job, backpacked the Appalachian Trail for 6 months and then created her own gourmet cooking business. I read of another woman and her husband my age who left careers to start a bed and breakfast in Alaska. Another cancer patient I know left her career in management to provide support services for cancer patients.....she has had recurrences and has been in treatment for the past 7 years and is living with and in spite of cancer.

I want to combine this time of my life with my new hard-earned cancer perspectives to do something more, to do something meaningful, to do something new.

I know I may not be guaranteed the time to reach all of my new goals, but
I am going to begin my new journey anyway.

Because really, the journey IS the destination.

Tuesday, August 28, 2007

Dedicated to Lynne Dahlborg

I can't remember how it happened, but tonight I accidentally clicked back to a previous post of mine, the "Control" post. I don't reread what I post here. That post was over 6 months old. Control (or loss of control) was one of my biggest cancer hurdles...and so I reread my post. I noticed that post had recieved comments, so I reread the comments.

I truly appreciate comments, and one of the comments was written by another woman with a rare cancer, gall bladder cancer, who also had a blog. This was her comment to my post.

Carolyn - I do not have cancer of the appendix, although I know of two people who do, so I had known that it's a rare cancer. I also have a rare cancer, gallbladder cancer, and I found your website through Sean's Sharing our Days site. I like how he links blogs to different illnesses, and expands our network of connection. I do face the questions about control and having a terminal diagnosis, and how to live my life that's left. I am 8 months post diagnosis, had a period of being asymptomatic, and now have a recurence in my abdomen where my gallbladder was. As a result, I've started chemo, and entered the world of worrying about side effects. These questions are so big, and living life one day at a time really is a hard thing. I, too, have a blog, and I'm always hoping that other folks who have my rare cancer will find it. My site is Life Changing Cancer at
www.dahlborg.blogspot.com. I appreciate what you are doing in telling your story and providing resources and links for others with your diagnosis.

I decided to check Lynne's blog tonight to see how she was doing, I hadn't read it in awhile.

Lynne Dahlborg died July 15th of this year.

We connected only for a moment but shared a lot. I cried when I read the last entries to her blog. Then I read her obiturary, and it was probably the best obituary I've ever read. It was truly a tribute to the person she was, it was a celebration of her life. She was a person I would have liked to have known. Here is an exerpt from her obitary:

"On her 59th birthday last year, Lynne Dahlborg went tubing with her children down the rocky course of the Virgin River near Utah's Zion National Park. Doctors had told her a few weeks earlier that she had a rare terminal cancer and removed her gallbladder.

Writing about that river ride in a blog, Ms. Dahlborg said she found herself exhausted and terrified, with no exit. Her daughter loved the three-hour adventure, but Ms. Dahlborg was in agony until she stopped fighting the flow, she wrote.

"Like life, the river kept going, and my surrender was part of living and healing and knowing that I could survive even the sharpest rocks and deepest drops," Ms. Dahlborg wrote, using the river as a metaphor for her cancer and strong faith that God would heal her spirit.

Her complete obituary is at:

http://www.boston.com/news/globe/obituaries/articles/2007/07/20/lynne_dahlborg_professor_at_suffolk_university_at_60/?page=full

Lynne, I'm glad the sharp rocks and deep drops are behind you now. And I look forward to when I will get to really meet you.

Thursday, August 23, 2007

Our Community

I'm feeling very grateful tonight. Grateful that I am part of the cancer community. I am grateful for those of you I've met and corresponded with and talked to on the phone. Those I've met in person in my community. Just since publishing my web site I've communicated with over 220 appendiceal cancer patients. I now know several more diagnosed with other cancers in my community.

But today was an especially great day in that sense. It just happened today that I interacted with a lot of people affected by cancer.

At first, just after I was diagnosed, I was uncomfortable around others battling cancer. It made me feel vulnerable. I wanted to be back in the "before cancer" world, the "normal" world.

But us cancer survivors (all of us alive with a cancer diagnosis or history, even the day after) share some very profound differences from the rest of those around us who haven't battled cancer. A woman who has never battled cancer commented today that the best defense was a positive attitude. Us cancer survivors who were there knew better.....you can't be positive all of the time after diagnosis. Sometimes we've had to put on a positive front as those around us were sure we'd die if we didn't stay positive, so we pretended to be positive to make them feel better when we struggled. All of us who've dealt with cancer up front and personal have had negative moments, we all admit to times of downright depression. And that's okay, that's normal. Please read:

"The Tyranny of Positive Thinking"

from the book "The Human Side of Cancer: Living with Hope, Coping with Uncertainty", it helped me a lot.

Those of us who have battled cancer also live our lives one day at a time. Most of us who have some time in the battle no longer fear death, so comments from the rest of the world like "I know you'll have many more years" are really not very meaningful to us. We no longer care about the quantity of our time, we are all about quality and meaning and purpose. My dentist today said I may need dentures in another 15 years. His employee, the cancer survivor, and I looked at each other and smiled when he said that, we both acknowledged his difference in perspective. In some ways, he seemed from another planet. Fifteen years to us has no relevance, we don't even contemplate a decade from now. She and I just want to raise our kids to adulthood, teeth or no teeth. I've almost been alive long enough to see my kids become adults, anything more than that is bonus time. Her kids are younger, she wants to live at least long enough that her kids remember her. We don't think to even ask for old age or retirement post cancer.

And as we acknowledged our perspectives wordlessly when we looked at each other, I felt so understood.

I was so grateful for a day of being around cancer survivors, grateful that I was part of the cancer community. I was grateful for my new perspectives.

In many ways, cancer is a gift.

Saturday, August 11, 2007

Insuring Memories

My husband and I went to see a movie tonight, No Reservations. It was a fun romantic comedy. The heroine's sister had died and she had taken on raising her niece as the child had no other family. The heroine was trying to take on the role of a single parent never having had children of her own. It was a cute movie. I kind of felt sorry for the surviving sister suddenly having to change her lifestyle to accommodate raising her niece.

At one point in the movie the child was missing. After a frantic search they finally found her at her mother's grave. She was crying and said" I'm afraid I'll forget her".

I lost it at that point and suddenly started crying. I remember that fear. That my kids would grow up without me and not remember times we had shared or how much I had loved them. I don't remember a whole lot about my own grade school years, just bullet points and generalizations about the climate in my childhood home. I have scattered mental photographs of my childhood in my head, just bits and pieces.

If I had died shortly after I was diagnosed, as was expected, I don't know how well my kids would have remembered me. What would their bullet points have been? What mental photographs would they have saved?

I talk to many women now diagnosed with cancer who have that same fear. Some have children who are still toddlers...they worry that they will not live long enough that their children will remember them at all. It's a heart-wrenching fear.

Since cancer I know I've made a point of spending a lot of one-on-one time with my kids. I spend a lot of mom-and-me time with the two of them together, and also make a point of spending individual time with each of them frequently. Before I was more the field trip mom and the mom who was around being the hostess when their fiends were over.

Now we have lunch together a lot, we go out for coffee frequently, we go for walks at the county park, we go shopping together. Just this week I've gone out to lunch twice with my eldest daughter, she and I have also gone to walk and talk at the local county park and have gone to a book store together. I spent three days of "mom and me" time at a hotel with my youngest daughter this week-- we took pictures and are making a scrapbook of our special trip.

I want my kids to have lots of memories of me and of our family and the time we've all spent together. I want them to always know that they are important to me and that I love them and love to be with them. I want to really know them and I want them to really know me. I don't ever want my children to forget me or how much I love and cherish them. I want us all to be saturated with memories of good times spent together. I want them to have good memories of their childhood home.

We've become very close over the past several years and I am so thankful for that.

My kids and my husband are the reason I fought so hard to stay alive. They are why I am still here.

Saturday, August 4, 2007

My Kids

Back to the cancer diagnosis and it's effects on my kids......

The cancer diagnosis and my treatment had many effects on our family. There were many difficult times...my kids hated when I was hundreds of miles away for surgery, but I wrote them and called them every day. They had to face at too early an age insecurities I never had to face as a child.

When I was a kid I was like most kids, my mom was the rock of my life, I never doubted for a second that my mom wouldn't always be there. My kids did have to contemplate losing their mom at a very young age. It was tough, they were old enough to understand what was happening and how uncertain my future was. They did contemplate their mom dying and leaving them.

My youngest daughter had nightmares. She crawled into my bed in the middle of the night several times sobbing "Mom, I just dreamed you died". I was glad she was able to talk to me about it, but it was so difficult trying to counsel her when I myself didn't know how long I would live. I couldn't promise her I wouldn't die, because I didn't know. I didn't want to lie and promise her I would live forever, though I so wanted to reassure her.

My kids and I have had a lot of heart-to-heart talks over the past several years. We've talked about things most parents probably never talk to their kids about.

My kids were also able to talk to my husband's mother, their grandmother. Their grandmother became their counselor and their confidant, I can never thank her enough for the emotional support she provided my kids. She was their rock when I couldn't be. I will forever be grateful to her for that. My sister-in-law and brother-in-law had them over for weekends when I left town for check-ups, they kept them busy and made them feel special when I couldn't. Teachers pulled them aside at school to talk to them and make sure they were alright. I received a lot of support from so many people, but the support I am most grateful for are the people who supported my kids.

In the end, the effects have only been positive. My husband and daughters and I don't take the time we spend together for granted. As a family we've developed a much greater faith and dependence on God. We talk more, we share more, we appreciate each other more. We make sure to spend one-on-one quality time with each other whenever we can. We are very close, my kids talk to me about everything-- things I know I never shared with my parents growing up. We all realize how short our time is on this earth and want to make a difference in this world while we are still here. And we all know death can only separate us from those we love for a short time.

I'll be gone for three days beginning Monday. One of my daughters, who is 16 now, previously said that right before she got married she wanted she and I to spend time together in a fancy hotel with a spa. About 8 months ago she rethought that idea...why wait? She got a job and I worked some overtime so we could have the money to do it now instead. We leave Monday :-).

Tuesday, July 24, 2007

Life after cancer........



For fun I thought I'd add pictures this time. I will continue more about my kids and their response to my diagnosis later, but for now I'm going to show you some pictures of myself and my life after cancer.

I recently backpacked with a friend at the Charles Deam Wilderness, we had a lot of fun and carried about 40 lbs. each about 10 miles a day (we are working on packing lighter!). We'd backpacked together several times before, but with a wilderness club. This was our first time backpacking without the leadership and experience of seasoned backpackers. We did great and didn't get lost!

I've always appreciated nature and the out of doors, but I do more so post cancer. I especially love backpacking as it is about truly living one day at a time. We didn't really plan where exactly we would hike or where we would camp, we just enjoyed every moment of every day. Nature (and life) at it's best.

The perfect campsite..........

Backpacking is a new hobby I've taken up since my cancer diagnosis. Since my surgery I've been on 4 backpacking trips, two to the Red River Gorge in Kentucky, once to the Appalachian Trail in Pennsylvania and this latest trip at the Charles Deam Wilderness. Planning to do many more!

Monday, July 23, 2007

Telling our kids

I made the decision to tell my kids the truth after I was diagnosed. It was tough. They of course asked "Mom, are you going to die?". They knew that people died of cancer.

At the time I'd been told there were no treatment options. I wanted to continue to be honest. I'd read the stats in regards to signet ring appendix cancer. From what I'd read at the time, it appeared long-term survival was only 10%. I didn't know if I was going to die. It actually seemed rather likely.

I told my kids that yes, some people died of cancer. But I also told them that many people also survived cancer, that many people didn't die. I told them that I was a very strong person, that I was feeling very well, and that I was going to do my best to find good treatment and to live a very long time.

It was the best answer I had, and it was an honest answer.

I knew what would happen next, that they would go to school and tell their friends over lunch that their mom had cancer. They did, and their friends told them of relatives and people they knew who had died of cancer. Since we were all being honest and open, we were able to talk about those lunchroom conversations at home.

One good thing about having a rare cancer...when my kids said their friend's family member had died of brain or some other cancer, I could honestly say "Well I don't have THAT kind of cancer, I have appendix cancer". Cool thing was that none of their friends knew of anyone who had died of appendix cancer.

I guess there are some good things about having a cancer that is rare. For my kids, it gave them hope. They understood that people died of many kinds of cancer, but they couldn't find a single person who had died of appendix cancer.

To be continued......

Tuesday, July 17, 2007

What do we tell the kids?

Over the past year since I've gone on-line with my story and web site, I've heard from over 200 people newly diagnosed with appendiceal cancer. Almost all of us are diagnosed as Stage IV. We all have advanced cancer.

I have been in contact with many women who are mothers still raising young children.

When I was diagnosed my kids were aged 10 and 11. All I wanted and prayed for was to be alive long enough to raise my kids to adulthood. To see them turn 18, to see them finish high school. If I only lived that long I would see my life as full and complete. I did not want to abandon my children. I did not want to cause my children that pain. Some women I communicate with have children who are infants and toddlers, they only hope to live long enough for their children to be able to remember them.

At some point we have to make a decision about what to tell our kids. Mine were told the truth early on. They knew from the beggining, even before they were told, that something was terribly wrong. I'd had surgery before, this time was different. The phone rang off the hook, their dad was crying. It was the first time my kids had seen their dad cry, "He sobbed, Mom, he was really crying". Suddenly there were lots of messages on the answering machine every time they came home. For the first time my husband asked my kids to pray with him because mom was really, really sick.

I've know some who have decided to minimize the details, to spare their kids the truth. "Mom has a really bad tummy ache and the doctor is going to try to fix it". I know of cases where that has backfired. One five year old approached his mom one day and asked "Mom, do you really have cancer??" I think if kids don't overhear conversation, they still know something is terribly wrong in their home.

I'll talk more about how my kids handled this in my next post.

Wednesday, July 4, 2007

Independence Day

Today is the 4th of July, Independence Day in the United States. I am just back from enjoying our local fireworks display with my husband and kids.

Independence Day is about freedom. A cancer diagnosis, with all of it's negatives, does grant some new freedoms.

For awhile just after my diagnosis, it was assumed I was terminally ill. On a plane to New York City, I suddenly thought of how cool it would be to FLY the jet airliner I was on. Wouldn't it be a rush to be in control of the plane, to be actually FLYING the plane? Before cancer I'd been afraid to be a passenger on a plane, I used to be afraid of dying in a plane crash. When I thought I was dying anyway, I suddenly got bold-- potential death was no longer a deterrent. I suddenly thought flight school might be great. I was free of my fear of flying.

I also suddenly lost my fear of playing piano publicly. I now play piano professionally for hundreds of people. Now it's not a big deal if I make a mistake, I just keep playing. Before cancer a mistake made publicly would stop me cold, I'd panic and be unable to play until I started the song again from the beginning. Thanks to cancer I am now free of that fear, I no longer have stage fright.

Small fears I'd had suddenly seemed insignificant when facing cancer. I've talked to other cancer patients who experienced the same thing. Small fears evaporated. They found new freedoms in many ways.

I also became free of my fear of death. After looking death in the face over and over for days, months and years, I've come to accept it on every level. I fine-tuned my faith, I gave all of my trust to God. Now death to me is just a door to a new beginning, a temporary separation from those I love. It will be a transition to a place where things will be right, where I will be home, where my body will forever be whole. I totally trust in an eternal life, now I look forward to Heaven all of the time.

I have one great fear left. A fear of not fulfilling whatever purpose I am here on this earth for. A fear of not using my life and time and experiences in a purposeful and meaningful way. A fear of not repaying the gift I was given of several more years with my husband and kids. The gift I was given of being here to watch my kids grow up, of being a part of their lives. I feel I have a great debt to repay. I fear not honoring that gift.

Thursday, June 21, 2007

Survivor Luncheon

Today I attended my 4th cancer survivor luncheon. It is hosted by a group practice of several oncologists at a very elegant hall, it is a yearly event. It has become over the last several years a sort of landmark in my survivor journey.

I received the first invitation to the luncheon only a few months after my MOAS surgery (cytoreduction surgery dubbed by an appendix cancer warrior as the "Mother Of All Surgeries" years ago). I'd just finished peritoneal chemotherapy and had only just begun my IV chemotherapy. I was still in my head a "cancer patient". I was a long way from being a cancer survivor. I didn't attend.

The next year I looked at the invitation for a long time trying to decide if I could attend the event, and I still couldn't. In part I still didn't feel that I'd "survived" cancer, I'd just finished chemotherapy. I'd also been focusing on moving past cancer. I didn't want to define myself by cancer. I didn't want to make cancer part of my social experience, maybe? I wanted to leave it all behind and return to my "normal" life (I was naive, I still believed you could go back to "normal" after cancer).

The third year I was invited I attended, alone. I didn't invite a guest as I wanted to be able to duck out if I felt uncomfortable. As it turned out, I had a great time and loved the other survivors I dined with.

The fourth year, I not only wanted to attend, but wanted to contribute. I offered to provide dinner music and to speak. I'd never played piano at an event like this one, attended by several hundred people at a very elegant hall, but hey, after a cancer battle, stage fright was the least of my worries. Many of my old fears had become insignificant in the face of a life and death battle. So, that year, I played my keyboard, spoke, and had a great time. This year and last, I've attended and also played dinner music for the event.

I love the survivor banquet now. I hope to attend for many more years. I now wouldn't leave the community of cancer survivors for anything. I love being with others who have survived cancer, they are in many cases my favorite people to be around. There's so much we can say to each other that we can't say to friends and family members. We share a history, we share a struggle, we share a profound and life changing experience. We understand each other.

I am proud now to be a part of the cancer survivor community.

Wednesday, May 30, 2007

Balloons

I've been attending several school concerts and end-of-the-year functions lately. My eldest daughter has been part of a school music program since grade school and is currently involved in two high school orchestras, the school's advanced orchestra and the elite chamber orchestra. The end of the year city-wide concert was last week.

Our school system has always combined orchestras in a final concert involving those from all of the schools in the city. The combined grade school orchestra plays selections, followed by the junior high orchestra, followed by the three divisions of high school orchestra. This way those new to the orchestra program in grade school can hear the awesome advanced and chamber high school orchestras and be inspired. Parents can see the progression of talent through the years as children graduate to ever more sophisticated musical achievement.

And every year seniors have mylar balloons tied to their orchestra chairs to signify they are graduating and that the concert is their final concert. They are honored individually at the end of the concert.

While in grade school, my daughter heard the high school concerts, and her dream was to be a member of those orchestras. She is now first chair in the most elite high school orchestra in the school system, the chamber orchestra.

Next year she will have a balloon on her chair and when I see it I'm sure I will cry most of the way through the concert. I probably won't see much of the performance. Just watching the concert this year I had trouble keeping it together.

When I was diagnosed with cancer, I wasn't expected to live long enough to see my daughter play a final concert in her grade school orchestra. Or her junior high orchestra. Seeing the balloon on the chair of a graduating senior was at the time I was diagnosed a future beyond my comprehension.

I know now life has no guarantees and that none of us are promised tomorrow, but I am ever so grateful for every landmark I experience in my kids lives now. Seeing a balloon on a chair next year will fill me with a gratitude I won't be able to contain.

It's unbelieveable. I've been here for 6 years of tomorrows in my kids lives.

I am blessed.

Friday, May 11, 2007

Time

Funny, cancer changes your whole perspective of time. Some dates are imprinted on my brain now. Date of my diagnosis- March 29, 2001. Date of cytoreduction surgery-May 16, 2001. Date of my last IV chemo-January 22, 2002.

Before cancer I assumed I'd retire and contemplate death maybe in my 80s after I'd finished my life's work. No more. I don't plan far into the future. It shows up in small ways all the time. I bought a water heater today. Did I want the 6 or 12 year warranty, they asked? Did I want to pay more for a water heater that twelve years from now was more likely to function? Who contemplates a future 12 years away, especially the future of something as insignificant as a water heater? The idea was as ludicrous to me as contemplating prepaying insurance on my house for 500 years. I bought the water heater with the minimum warranty.

I now sometimes accidentally start writing the date of the new year BEFORE January 1st, I never did that before cancer. In all the years before cancer I dated checks with the prior year for about a month. Not any more.

I no longer take the future for granted, at least not the future in this world. Six years later, I still live one day at a time. I think short term. It gets in the way sometimes...making future commitments is really difficult sometimes.

Cancer forever alters your perception of time. You never take the future for granted again.

Tuesday, May 8, 2007

Guilt

I was thinking about my last post and my guilt in regards to having been a smoker. I've found in my connections with other cancer survivors that many of us feel guilt. Some because they didn't eat enough vegetables or didn't exercise enough or because they weighed too much. They didn't eat organic food, they didn't drink bottled water. We feel we were somehow responsible.

We look for the reason why, what did we do wrong?

The number one cause of lung cancer is smoking, but in one study I read that only about 10% of smokers go on to develop lung cancer, 90% don't. Not fair to 10% of the of smokers. Kids get cancer, athletes get cancer. Bad things happen to good people. I'm a nurse, I see bad things happen to good people all the time. And we all fail in some area. Some take great care of their bodies, but poor care of their relationships. Who is to say which is better in the long run. I never asked "why me", but I did wonder sometimes about others who abused their bodies AND were just plain mean into old age. Why did they not get cancer?

In the end, guilt serves no purpose except to motivate, I guess. Guilt in part motivated me to quit smoking. It motivated me to help raise the tobacco tax to maybe help some kids avoid the addiction. Guilt motivates others to eat better, take better care of themselves. Maybe my survivor guilt helps motivate me to remain in the cancer community and to try to help others struggling with the diagnosis.

So maybe guilt serves some good purposes, but what we really need is forgiveness. We need to forgive ourselves and move on.

Thursday, May 3, 2007

Cigarette Tax

In Indiana legislation recently went into effect increasing the tax on cigarettes 44 cents per pack. I actually was part of a group that lobbied for the tax increase with the American Cancer Society, though we'd requested a $1 per pack increase. I actually went to my state capitol and spoke to my state legislators.

They say that cost is the biggest deterrent to kids acquiring the habit. I'm sure that's true. My teenage kids would have trouble parting with the $5 or more a pack in some states. I don't want my kids to ever smoke. They say now that 30% of all cancers are smoking related. Smoking is related to more than just lung cancer. More cancers get added to the list all of the time; pancreatic, colon, bladder, kidney... I don't want my kids to ever have a cancer diagnosis.

Maybe my own cancer was a result of my former smoking habit.

Yes, I smoked, for many years. I started smoking when I was 15. And for a long while I lived with the guilt of knowing that maybe I caused my own cancer. Maybe I was responsible for all of the grief (and expense) my diagnosis caused my husband, kids, friends and extended family. I quit almost 5 years ago, but remember, I'm a 6 year survivor. I smoked for a year after my diagnosis, and hated that I was so addicted that I couldn't quit even as I fought for my life. I'm ashamed to admit that here. I've read that only 50% of cancer patients who smoke give up the habit. Go figure.

Smoking truly is an addiction, nothing more. Nothing about smoking has the physical effect of relieving stress except for the slow deep breaths you take when you take a drag (and the relief from the withdrawal you feel when you aren't smoking). I was so addicted I even rationalized smoking...."chemo, barium and x-rays are carcinogenic, so I'm going to at least choose one of my carcinogens". How is that for twisted logic? I was terrified as I smoked, thinking I was making cancer cells grow, but I failed time after time when I tried to quit.

I did finally quit; cold turkey was the only way for me. I didn't succeed using patches or gum, though I tried them. I'm sure I tried to quit hundreds of times before I succeeded. In hindsight, smoking was much more stressful for me than not smoking. I love the freedom of not being an addict. Part of what helped me quit was the “Freedom From Smoking” online program sponsored buy the American Lung Association:

http://www.lungusa.org/site/apps/kb/home/login.asp?c=dvLUK9O0E&b=38973

I'm grateful that my kids now abhor cigarettes and cigarette smoke. I'm glad in this day and age my teens don’t see smokers as “cool”, they see them as “losers”. I'm glad cigarettes are expensive. I'm glad there are more smoke-free places to protect my kids. My kids want all restaurants and public places to become smoke free- my eldest made me laugh when we went to a restaurant the other day- she said a smoking section in a restaurant was "like a peeing section in a pool". We had smoking rooms in the house and didn't smoke around our kids, but in hindsight, maybe we didn't protect them enough. They say if kids don't start smoking as teens, there is a good chance they will never smoke. We are almost there.

I just don't want my kids to ever have a cancer diagnosis.

Monday, April 23, 2007

Limbo

I loved a book I discovered when I was a 3-4 year survivor. It was written by Glenna Halvorson-Boyd (a 10 year oral cancer survivor) and Lisa K. Hunter (a 3 year melanoma survivor). They said they wrote the book they'd needed to read but that had not been written, "Dancing in Limbo: Making Sense of Life After Cancer". After interviewing many cancer survivors, they discovered that they all shared many of the same feelings.

Cancer survivorship is a new frontier. In my own lifetime as a nurse, I was sometimes part of a conspiracy long ago to help families keep a cancer diagnosis secret from the patient. Sometimes families decided to spare the patient the knowledge of their disease; after all, what could they do if they knew do except anticipate their own inevitable and painful demise? Cancer was always equated with death. BTW, research later discovered that these patients knew their diagnosis, but also knew they weren't supposed to know, so were denied support. Back then the word cancer often wasn't even spoken aloud....it was often referred to as "the big C". It was the most terrifying diagnosis one could receive....."please don't let it be cancer!".

So there isn't a wealth of knowledge about cancer survivorship. I'm going to quote from the first chapter of the book "Dancing in Limbo: Making Sense of Life after Cancer". I was ever so grateful someone had identified and put into words exactly how I felt. (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."

They also point out that we are different from those who have survived other life-threatening traumas in that “as cancer survivors we hope we are cured and proceed as if we are cured, but we cannot be sure”. Cancer outcomes aren’t known for years, so the limbo is a lasting one. Another appendiceal cancer survivor trying to reclaim her life recently spoke of the possibility of recurrence, which is common with appendix cancer, as a ”grey cloud” that is always present.

Someone suggested to me the problem is that we just don’t have enough faith. I disagree. I’ve read essays by clergy survivors who experience the same struggles. Read the Psalms….faithful people struggle.

I've been in the cancer survivor community for awhile now, and over and over I see the disorientation of those who finish treatment and try to resume their former "normal" life. They are afraid to say they are struggling, after all, they've survived cancer, shouldn't they feel grateful? They will admit their struggle to other cancer survivors, but not family and friends as they are afraid of being seen as ungrateful. I sometimes want to welcome them to Limbo…….not a bad place really, but a place of transition. A new journey of sorts. The road to creating a new after-cancer normal.

Wednesday, April 18, 2007

Volunteering

I was recently very much honored by a columnist who wrote an article about myself and another volunteer in my community. I kind of thought it might be a filler article for the "Neighbors" section on a slow news day when I was interviewed. Maybe an article about several community volunteers, a tag line and photo for each of us.

But no, front page Easter Sunday. Wow.

You can read the column here: Ready to resurrect your life?

And the particular columnist is one I truly admire. He is a gifted journalist. That he singled us out was humbling. There are lots of other great people in the world to write about, it was very much an honor to be chosen.

I do volunteer a lot. I volunteered before I had cancer, but I volunteer more often now. Now doing something meaningful, something that makes a difference in this world is important to me. And I was the recipient of many acts of kindness not so long ago. I am glad I am here to pay it forward.

But giving and volunteering has a huge benefit. When you see a need and try to be compassionate towards that particular need, you meet compassionate people. You get a new view of the world. There really are people who care. A lot of them. You hear wonderful and inspiring stories that help you believe in people, believe in the good in our society, believe in the human spirit. It has a kind of snowball effect. I know it sounds cliche', but you really do get more than you give.

Saturday, March 31, 2007

The Car Loan

I am still so ecstatic about making the 6 year mark. I didn't feel this way at 5 years. Maybe I was afraid I'd jinx myself if I got too excited at 5 years? But maybe now it's okay to let myself feel more comfortable, to feel that maybe I really DID make it. Maybe I can even consider contemplating the "cure" word.

Just trivia. I remember thinking a little over 5 years ago that I was committing fraud. I'd been diagnosed with the cancer. I'd been gently told I was not likely to live a whole lot longer. But we needed a new car. I kind of thought that before long I might accumulate enough medical debt that no one would be interested in loaning us money. So, before I went for the big surgery, we purchased a new vehicle. We signed the loan papers committing to make the payments for 5 years. As I signed the papers I remembered feeling very dishonest. The term of the loan was longer than my life expectancy.

I remember making the final payment on that loan. It was so great to write that check.

Thursday, March 29, 2007

Today I am a Six Year Survivor!

Today is wonderful.

Six years ago today I was diagnosed with stage 4 appendiceal cancer. It was assumed I was terminally ill when I was diagnosed.

I was thinking today of things I've experienced in the last 6 years. I remember how hard I fought. I remember refusing to let cancer take me over, I remember fighting for all I was worth. I remember training for a bicycle century while I was on chemo. One day I pedaled against the wind when it was 40 degrees and pouring down rain. I refused to let cancer and chemo control me, conquer me, make me weak. I was tough, I was going to fight, I was angry, I was afraid. Bicycling was my stress reliever. Six months after I finished chemo I did my first ever bicycle century, 100 miles in a day. I did it again 3 months later.

But I am alive. I've seen my kids finish grade school, finish Jr. High, survive adolescence and become high schoolers. I've been here for their first boyfriends, first kisses, first dances, first dates. In a few days my youngest will be behind the wheel of a car, my eldest drives everywhere now and will graduate next year. I've been with my husband 6 more years, we will celebrate our 20th anniversary this year. My husband weathered the cancer storm that I've seen destroy many relationships, he's my hero.

I went into a store last night while my daughter waited in the car. When I came back she told me she had worried about me, she said she worries about me a lot now. I didn't come back as soon as she expected me to. She wondered if I'd been taken, if something might have happened to me, if I was gone. Before she used to have frequent dreams that I had died. Maybe that was still a remnant of our desperation 6 years ago.

We don't take anything for granted anymore. Not a single day.

Wednesday, March 21, 2007

When is it Over?

When is it over? I remember having that thought often. I was so psyched to "beat it", to survive my cancer. When could you officially declare that you'd won the battle and relax? I had always assumed the 5 year mark was the definition of "cured" in the cancer world. Everyone talked about 5 year survival rates like they were the gold standard. If you made if five years weren't you cured and couldn't you stop the testing-- the CT scans, the x-rays, the tumor markers? Wasn't the very long and hard battle finally won if you were cancer-free at 5 years?

Then I remember reading somewhere that the term "cure" was no longer used, we were in "long term remission" if we made it to the five year mark. I'd always felt remission to mean you still had cancer, it just wasn't currently active. We would always in some sense be "cancer patients". I read an article written by a cancer patient who'd read "long term remission" at 5 years vs. "cure" in a magazine in a doctor's office. When she'd read that statement, she'd thrown the magazine across the room. I could so relate to how she felt. We want the "cure" word, the guarantee it will never come back, the permission to go back to our normal, before cancer lives. To put it all behind us. But some of the appendiceal cancer specialists feel we should have yearly CT scans for life. For life. Forever. We can never stop being vigilant.

I read a statement by a cancer survivor recently. She said we are like recovered alcoholics, in a sense. And we are. We are no longer actively in cancer treatment, and we may no longer have detectable cancer, but it's never really over. We will always be on guard, we will always be vigilant. We are all now acutely aware of how rapidly our lives can change, how much we can lose in a very short time. We can't go back to before cancer when we were more naive, just as a recovered alcoholic can never go back to the days before his first drink. But somewhere between the diagnosis and the recovery we aquire new skills, we deepen our character, we develop new perspectives. We become equipped to help someone else just beginning the journey. Being able to do that kind of makes it all worthwhile.

Tuesday, March 6, 2007

Support Groups

I did not join a cancer support group after I was diagnosed. Did I need emotional support? Yes. But I did not join a support group for reasons I have never shared with anyone.

I was afraid. I was afraid to become part of a group of those who also had a cancer diagnosis. I had my mind focused on staying positive;the mantra I had in my head always was "I will beat this!". I could only contemplate surviving in my conscious mind (my subconscious mind though battled this notion with other possibilities in my dreams as I slept). I was afraid I might become friends someone who like myself recited the mantra "I will beat this" but who lost the battle. Or I was afraid I would convince someone else that we could beat the disease and then would succumb to it myself.

I had an experience like the one I was afraid of in spite of the fact that I'd not joined a support group, though. A woman who knew about my rare cancer diagnosis pulled me aside when I was diagnosed. She told me she was a survivor of an equally rare and fatal cancer, and that she had been cancer-free for 3 years. I'd never known she'd had cancer. Her mantra was also "I can beat this!". I clung to her, she represented hope that I could beat my disease also. She became my role model of survival. Then one day after I'd finished my last chemo, I stopped by to tell her I turned the treatment corner and was on on my way to survival too. Her face was expressionless, she said she was back on chemo, her cancer had recurred. I wanted so badly to support her, but at the same time she was a reminder to me of how vulnerable I was, how little control I had. I felt horrendous guilt as I wanted to avoid her. I wanted to run fast and far.

I've always volunteered in the senior community, and they became my support group of sorts instead. If I was home alone and afraid, I'd head to a nursing home to play piano for the residents. They were proof to me that many people DID actually live to become old. I surrounded myself with people who had lived long enough to become grandparents, who had lived long enough to fulfill their life's purpose. They also reminded me of how healthy I was. I may have been on chemo but I could walk without a wheelchair or cane, I was still very able, I was still very healthy.

Time does heal things, though, and I don't feel as vulnerable as I once did in regards to my cancer. My cancer was very aggressive, so the more time that goes by without a recurrence, the safer I feel. I do now know that we are all very vulnerable all of the time, though. I still live very much for today.

Four years out I did finally join a support group for a short time. I did so to combat the difficulty I had in reentering the cancer community when I published my web site, when I had to go back and read all of the statistics about my cancer that I hadn't looked at in so long. And several people in my support group succumbed to their cancer. I began volunteering with a hospice to get good at dealing with death. I've come full circle now. I'm less afraid of death, I see it as a new beginning and not an ending. I can be with those dying of cancer in their final moments, I am proud to be able to see them safely home.

My mantra has changed, it is no longer "I will beat this". It is "I will not let my experience have been for nothing, I will use this". Survival is no longer my main goal. Living a life of purpose, be it long or short, is my priority now. And I've found I love being part of the cancer community.

Saturday, February 24, 2007

CT Scans

CT Scans. I dreaded them. I was in anguish anticipating dates of impending scans. I don't know how to even describe my feelings on the days I awaited CT scan results; those days were horrible, terrible. Sometimes the unknown, the waiting, was almost worse than the initial diagnosis. A woman I know with breast cancer told me that the ten minutes she waited for the result of her mammogram were the longest in her life. Ten minutes? I waited days for CT scan results. I'd have paid a lot of money to have results in ten minutes. Ten minutes of anguish vs. hours and hour of dread.

My life after chemo and surgery rotated around scheduled CT scans and their results. I lived my life from CT scan to CT scan, afraid to plan my life beyond the next scheduled scan. I felt sometimes like I imagined a prisoner must feel as they came before a judge for sentencing. Would I be paroled and on probation...able to live my life in relative freedom until the next scheduled CT scan? Or would my CT scan sentence me to yet more surgery and more chemotherapy, put me back on that merry-go-round of uncertainty. Or would my CT scan result be a death sentence, would I be put on death row spending what was left of my future anticipating my demise? I suddenly felt sympathy for the convicted criminal, as strange that sounds. We were in the same fraternity.

I know I watched every movement, facial expression and mannerism of the person conducting my scans. Did they look like they'd seen something on the scan, had they flinched? Did a facial expression that wasn't a smile mean they saw something on the scan that was negative, a new tumor? When they weren't overly friendly, did it mean they were keeping a professional distance as they saw something terrible on the monitor? When they smiled and were friendly, were they covering up so I wouldn't know what they had seen? I never paid so much attention to body language as I did to that of the person conducting my scan.

I've passed the 5 year mark and wondered if this means I can get off the CT scan merry-go-round.I've heard from some that we should get CTs yearly for life.I haven't decided if I will do that yet.

Many write me who are stuggling while awaiting scheduled CT scan or awaiting results. I know only too well what a difficult time you are going through. My heart goes out to all of you.

Sunday, February 18, 2007

Loss

At one point I was told the odds of my dying were significantly better than my odds of surviving cancer. As a nurse I'd dealt with death and with dying patients for years. I'd been present with families immediately after a patient's death and saw their grief, they'd lost someone they loved as the dying person slipped into oblivion. The families and loved ones experienced loss.

My prognosis gave me another view, though. I viewed death now from the perspective of one who is dying. There was a terrible sense of impending loss. A dying person contemplates the loss of ALL of the people he or she loves at once. I contemplated losing my children, my husband, my best friend, and my extended family along with the loss my home, my job, my belongings. A total and complete loss of all that I loved and knew. When people lose children or spouses or homes or jobs, our society considers those individual losses extremely stressful and life altering. The dying person faces all of those losses simultaneously. It is overwhelming.

I believe in an afterlife and a Heaven, and that belief offers reassurance. But still, dying is the loss of all that is known for that which is unknown.

Thursday, February 8, 2007

My Very Short Life

I thank Nancy for her comment to my previous post, she verbalized perfectly what I've felt ever since my diagnosis...."What will I now do with the rest of my short life?".

I no longer assume a long life or plan for retirement or old age. I don't make long term commitments easily anymore. I am obsessed with purpose. If I am here surviving what many haven't, I must be here for a reason. I feel a need to live a life that makes a difference in some profound way, I must make my time count. At the same time I feel too unsure of a future to commit to a direction sometimes. It's a sort of Catch 22.

My priorities changed too. I find that is true with many cancer survivors. We see the world differently. One woman I know has been diagnosed with a very aggressive cancer. Though she is currently in remission, her life goal now is to live long enough for her two year old daughter to remember her mother. We think like that now.

Sometimes I wonder if there will ever come a time when I can feel safe and comfortable in the present again. If I will ever feel okay about wasting time, if I will ever not feel anxious about making future commitments.

I know now that I used to take a lot for granted.

Sunday, February 4, 2007

Control

Being a cancer patient and assuming that identity impacts your thinking in all ways. I'd always been somewhat of a control freak, and I suddenly realized my sense of being control was and always had been an illusion. All of my assumptions about my future had been based on the fact that I would indeed have a future. It seemed that had been a false assumption. My future was not something I controlled, as it turned out.

Immediately on assuming the cancer patient role, I gave control of my life to the cancer. My thoughts and activities were suddenly dictated by the disease. Cancer dictated that I would be in a doctor's office almost every week, cancer dictated that 4 hours of one day a week would be devoted to chemotherapy, cancer dictated that I would be at a hospital pre-registering for lab work (after the wait at preregistration) and having labs drawn (after the wait in the lab) almost weekly. Cancer made the rules, cancer made my schedule, cancer determined my options, cancer determined our budget and my choices, cancer often controlled my thoughts.

I started living one day at a time. I no longer put my faith in tomorrow or next week or next year. They say that is the way we should all live, but in reality,it is a difficult way to live. We live in a very future-oriented culture. I no longer had the ability to make an appoint for dental cleaning 6 months down the road. I could no longer comprehend planning for a future. I couldn't contemplate my kid's graduations, continuing my own education, furthering my career or planning for my retirement. I lived one day at a time, that was all I felt I could control.

Tuesday, January 30, 2007

New Identity

It finally sunk in and I assumed the identity of a cancer patient. It was kind of hard to deny after I'd read my chart, watched the reactions of all of those around me, visited an oncology office, opened and read all of the cards, and had seen my name listed on church bulletins as one of the afflicted. I knew now it was real, no mistake had been made.

I started to do research on my disease. I knew it was very rare. I spent hours and hours looking for medical information on the internet. I finally found and read all of the horrible statistics and predictions related to my diagnosis. I was a nurse. If I'd read all of that on behalf of a patient, I'd have assumed the patient was a goner. It was emotionally devastating. I tried to contemplate not being here to raise my kids, to contemplate not spending my old age with my husband. The bottom had truly fallen out of my life. I was afraid now to even contemplate a future. I'd always said that I could die anytime in a car accident, but this was different. Before when I'd said that, it was an intellectual reality. Now it was an emotional reality as well. It was like comparing the intellectual reality of potentially dying in a car wreck to being in a speeding car with the accelerator jammed, anticipating impact while watching the world fly by outside of my window.

It's funny now, but at the time I found myself suddenly unable to purchase clothing or any durable goods for myself. I was always frugal, and it seemed, based on the medical literature I was reading, that I might not live long enough to wear out the shoes I contemplated buying. I was suddenly a bad investment.

Monday, January 15, 2007

Life as a Cancer Patient

When I left the hospital after my appendectomy, I began my life as a cancer patient. I wasn't ready yet to use the term survivor, though I'd been told everyone alive with a cancer diagnosis was now termed a survivor. To me, a survivor was someone who was still alive 5 years later, or who had at least completed treatment. I had a long way to go.

I remember several things about my transition to life as a cancer patient. I remember waking up mornings and for an instant my morning would be normal. Then, once I was more fully awake, I remembered that my world had changed, it wasn't a normal morning. "Normal" was gone, I had cancer.

I remember feeling so out of place in an oncology office at first, I felt I didn't belong there. I looked around the oncology office waiting room and saw people who had lost their hair, who were very thin, who looked ill. Was I one of them? I felt a mistake must have been made. I felt great, I felt healthy. I wanted to leave and go back to my normal life. But normal was gone.

I remember hardest part; seeing the pain my diagnosis caused my husband, my kids, my parents, my best friend, my sisters, my in-laws. And I couldn't make it better, I couldn't change it. My best friend summed it up best. She called me one day and said she just wanted to hear the dishwasher run. She said she wanted our normal back. She wanted our lives to be the way they were before I had a cancer diagnosis. She said she had been home contemplating my diagnosis and had heard the dishwasher run, and for a minute she felt everything was normal again, everything was the way it was supposed to be. She'd stood and just listened to the dishwasher and remembered normal.

Normal. I mourned the loss of the normal life I had taken for granted. Life had changed so rapidly and so unexpectedly. Would life ever be normal again?