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.

Tuesday, January 29, 2008

News: Emotional well-being doesn't affect cancer outcome

Emotional well-being doesn't affect cancer outcome. That was the conclusion reached in a study evaluating over 1000 cancer patients and their survival rates over an eight year period. The study was published in the journal Cancer in October of 2007. This is a link to the article:

Emotional well-being doesn't affect cancer outcome>

I have a feeling the research is correct, and I so love the burden that lifts from many of us who have received a cancer diagnosis. It's okay if we aren't always smiling.

Another great article to read is:

The Tyranny of Positive Thinking

from the book "The Human Side of Cancer" by Jimmie C. Holland, M.D., of Memorial Sloan-Kettering Cancer Center.

I know many told me I did so well because I was always so positive. They were sure that was why I got through surgery and chemo without incident. They are sure my great attitude is the reason I have been cancer-free since.

I did try to stay positive, at least in public, when I was going through all of that. I made myself smile a lot. I also fought as hard as I could with everything I had in me and available to me for the better part of a year. And in a sense I am still fighting, we can never really let down our guard.

I thought maybe negative thoughts would make cancer cells grow or depress my immune system or in some other way sabotage my likelihood of staying alive, so I was afraid to think negatively. I was afraid to be depressed, I was afraid to be stressed, I was afraid to be anxious. I was afraid to be afraid.

But the truth is, I was sometimes depressed, I cried a lot when no one was looking, I was stressed, and I was afraid. I was terrified a lot of the time, terrified that my cancer might return, that it had returned, that I wouldn't live to raise my kids. I felt I truly understood the meaning of the word anguish before every CT scan. I wrote pages and pages and pages in my journal trying to exorcise those feelings. In private I wasn't so "up". Then I felt guilty for having those negative emotions, didn't I have enough faith? Guilt was added to the list of negative feelings I wasn't supposed to have.

I was not always positive.

Those diagnosed with appendiceal cancer and advanced abdominal cancers especially struggle. They face a huge surgery (hence the MOAS nickname "Mother Of All Surgeries") and its aftermath. And even when the surgery, chemo and recovery are finally over (not the debt, of course) there is the extended period of living in limbo unsure of a future. The endless testing. The insecurity. The horrible statistics inprinted on our brains. There is the picking up of the pieces of our old before-cancer life in the aftermath and the trying to make sense of what's left...employment, school, altered relationships, childcare. There is the coping with the realization that our normal lives before cancer are forever gone.

Yes, we often feel sad, afraid, and depressed, though often we hide how we feel from those who love us as they already have done enough for us. We don't want to burden them also with our struggling emotions, so we go it alone. Especially when they so want us to be positive and strong as they are sure our cancer will return if we can't stay "up".

We need to accept the negative feelings associated with a cancer diagnosis. We don't need to feel guilty or afraid when we have them. They are normal feelings. We are not sabotaging our odds of staying alive when we struggle, we are just being human. And that's okay.

Friday, January 25, 2008

The View From Eighty

I had an interesting conversation today with a man in his eighties diagnosed with lung cancer. He's already lived a year with it, it's a single small tumor that's stayed the same size and even shrunk a bit with treatment. It hasn't gone anywhere else. But he felt it was unfair that he had cancer, unfair it wasn't going away with treatment, unfair that chemo made him tired. It was unfair he had lung cancer when he'd quit smoking many years ago. He was afraid of dying prematurely of cancer. He wanted me to reassure him he would be cured.

But he got 40 more years than I did cancer-free. He got to finish his life, raise his kids, fulfill his commitments and travel before he had to deal with a cancer diagnosis. A cancer diagnosis while in your mid-eighties didn't seem so unfair.

I had to wrap my head around that a bit.

I read a book once, "The View From Eighty", written by Malcolm Cowley, born in 1898. He had turned eighty and wanted to tell everyone what it felt like to have lived for eight decades. He said he still felt 25 until he stood up and noticed his body didn't work so well. He said death and disease were never fair at any age; if you were 25, you thought 50 was old and death and disability could be expected at that age. But when you were 50, fifty was young; potential death and disability were decades away at age 70... until, of course, you turned 70. So my eighty year old friend probably thinks cancer and death should still be decades away, at 100 years old.

When I think about it, maybe some mother with a young child bald from chemo saw me at Sloan-Kettering at age 41. Maybe she thought how lucky I was to have lived for four decades. I'd made it to college graduation, marriage and had lived to get my first grey hair. I'd been able to have children. To her I'm sure I was the lucky one. She probably would have loved for her child to live to age 40.

I guess there is never a right or good time or age for cancer.

It's never fair.

Tuesday, January 22, 2008

Planning

I went to my friend's funeral today. I was sad for her husband, he is my friend also. He said he's never been alone before, this will be a new experience for him.

He spoke at his wife's service. It was wonderful, he told a story that was actually funny but that expressed her sense of humor and ability to forgive easily. He told everyone what a hero she had been to him. I learned things about her that I hadn't known. Cool thing....she used to quilt, and she saved her husband's old work shirts over the years as they were replaced. She made a quilt of all of the discarded shirts as a gift for him when he retired. Unique idea! I hope he wore colorful shirts and treated them nicely? I was trying to picture the quilt from my knowledge of work shirts worn in steel mills, and it wasn't pretty. Did she keep the shirts hidden so the quilt would be a surprise decades later? She mut have been very committed to their relationship.

But the service made me feel peaceful, and hopeful. I was glad for her....that her time with chemo and scanxiety and tests and doctor appointments and second opinions was over for good. Glad that she was well and whole again. I know she is now fully alive...not bedridden, not a hospice patient.

The service was so well done because she had planned it for those of us she knew would attend. It was her gift to us, and it was filled with hope.

I know of cancer patients who have had fun planning their funerals, one made sure they showed a movie clip during the service that she really wanted everyone to see. It wasn't anything profound or meaningful, just a clip she liked and wanted to make sure no one missed. I heard they left the service scratching their heads, and I'm sure she was somewhere laughing. I'm thinking you could kind of have some fun planning your own funeral? Leave 'em laughing, even? Get the last word in? I mean, who could say no to your final requests? It could be an opportunity for the ultimate in creativity.

Someone asked me many years ago if I would rather know I was going to die before it happened. At the time I said yes, as then I could make sure my laundry was done and that I'd cleaned up after myself and had not left out one of my journals for everyone to read. If I knew ahead of time I could tie up my loose ends and not embarrass myself. I wanted control!

But now, after years of testing and limbo and contemplation of one's end, I would choose to live oblivious to any thoughts of my own demise, to go about my day-to-day activities planning for an indefinite future in ignorant bliss (like I did before cancer took way my "normal"). Now I'd choose to just have a massive unexpected heart attack when it was my time to go.

So what if they read my journals.

I've learned I'm really not in control at all anyway, control is an illusion. All plans are tentative.

Friday, January 18, 2008

Hope

A new friend recently told me that my own story I published on my web site may help people in their physical battle with appendiceal cancer as much as their medical treatment, because my story offers hope. That maybe knowing there is a long-term survivor might provide a certain amount of healing in itself.

Hope.

Especially after I was diagnosed with cancer, hope became my golden word. I recently read this quote: "There is no worse death than the end of hope." ~ Pelagius.

I am Christian, and everyone quotes the passages in I Corinthians 13 about love, but the Bible speaks of three great virtues; faith, hope and love. Love may be the greatest, but hope is not an insignificant virtue. I love the word hope.

I will never know why I have survived what I was once told was a terminal illness as long as I have. But in contemplating hope, I was recently recalling all of the tidbits of hope I clung to after I was diagnosed.

I found medical statistics that said 10% of those with signet ring appendiceal cancer survive...someone had to be in the 10%, why not me?

I clung closely to the knowledge that I was on international prayer chains. Many people were praying for me, and though I knew God often answered "no" to prayers for healing, I hoped I might get a "yes". I read the book someone gave me "The Healing Power of the Christian Mind" before CT scans.

I had great medical care, that gave me hope. My surgeon knew the statistics for my particular cancer were dismal, but he never talked about that; instead he told me after my surgery when I insisted on dressing in street clothes and only going to bed to sleep that I was a very strong person, and if anyone could survive, I had a good chance. I clung to his words.

A chemo nurse I had once told me, "Oh, you'll be fine, you'll make it". That blew me away, she was a cancer nurse who knew my odds, and she knew I was a nurse, but she seemed so sure I'd be the one to survive. Maybe she had a way of knowing who would survive, a kind of sixth sense. I trusted a nurse's gut feelings as my own had always been right, so that gave me incredible hope.

I read stories and articles about those who had defied their odds of dying of cancer. Of those who had had miraculous healings. Why not me?

I read about mind-body medicine, I listened to tapes about quantum healing, I tried visualization in hopes I could make my immune system destroy stray cancer cells.

Anything.....I clung to anything that gave me a tiny bit of hope of staying alive to raise my kids. I kept a written journal of reasons why I might hope to survive and read it whenever I got discouraged.

But in the end I have learned and have come to accept that there is a greater hope. Because of my involvement in the cancer community and with hospice, I have come to accept that none of us get out of this life alive......at least not in this body. I had to contemplate that a lot. Cancer survival is just a little more time in this temporary here and now.

I have a very great belief in an afterlife now, a heaven. To me it is a reality. I have talked to people who have had near death experiences and who cried for days when they came back and left what they knew to be their "real" home. I've talked with patients who have seen before death their loved ones who went before them coming to take them home. A little boy in my church, just before he died of brain cancer was winessed having a cheerful and animated conversation with someone no one else could see, he also then excitedly pointed to a corner of the house where he said he saw his dog, he said his dog was back (his dog had died several months before). I've read several books that have inspired me to think beyond this life, "In Light of Eternity" and "Heaven" are two.

Today I will go to the wake of another cancer patient who was a friend. A recurrence of her cancer came on fast and furious. Just 6 months ago we were working together, she had just attended her daughter's wedding, she was fine. She had hoped to stay alive.....but I know she is still alive, and she is free and no longer suffering. She is home.

I'm so glad my hope now isn't just for life in this realm. I'm so glad my hope now extends beyond this life, that hope for me is now bigger and encompasses more....so much more.

I am never without hope.

Sunday, January 6, 2008

Anger

My kids picked a movie for us to watch recently (while I was waiting for scan results). Griffin and Phoenix. It's about two single and terminally ill cancer patients who fall in love. I loved the movie. If you are going to have to be terminally ill with cancer, it portrayed the best possible case scenario.

I'm guessing they died within days of each other so spent very little time apart. And neither, in the movie, had any significant relationships they were leaving behind. She had no children, and he'd alienated his long before and was not a part of their lives. His ex-wife was even remarrying, so the kids would have a father when he was gone. Neither seemed to have meaningful careers they were leaving behind. They lived together in his dumpy apartment.

They didn't have a lot to lose. And the person they were most intimate with totally "got" how they felt and what they were going through and shared their experience.

But what I liked most about the movie was that at some point in time they both expressed unadulterated, pure anger. He took a tire iron and smashed windows of parked cars along a street (including his own). She blew up violently at a woman who appeared not to value her children (she had no children and would never have any). I cheered them on when they were acting out.

Anger is a very real feeling most of us have at some point in time.

And anger is justified, it's right, it's politically correct. It's okay for us to be angry. To have anger at the potential loss of our futures, at the potential loss of all of our relationships.....the potential loss of all that we know and love and hold dear. Cancer threatens to take all of that away from us. Cancer also takes away our peace of mind, our comfort, our sense of normality. Cancer takes from us our time, our money. Cancer causes us to unwillingly hurt those we love. Cancer causes us physical pain, cancer terrorizes us. Cancer is a vicious enemy, a monster.

I think we feel we can't express anger sometimes. We think are supposed to feel humble and prayerful and confident and positive and optimistic and grateful for every moment we are alive.

But really, it's okay and right to feel anger at the monster cancer is and what it does to our lives....and it would probably be healthy for us to find a way to express that anger (but Griffin got arrested for smashing the windows, so maybe not that :-)

Friday, January 4, 2008

Cancer Community Wisdom

I communicate with many cancer patients now as a result of having been in the cancer world for several years. I so appreciated the wisdom that fellow patients have articulated and sent my way this week.

One has coined a word for the anxiety of follow-up cancer scans: Scanxiety. A perfect word! Everyone copes with it differently, but we all have "scanxiety".

Another friend who lives in the cancer remission world told me "I never realized how tough it was to LIVE with a cancer diagnosis". She is a medical professional and has been around dying cancer patients, so she understood that part of it. She understood dying of cancer. But it never occurred to her, until she had to do it, how tough it was to live with a cancer diagnosis.

It's the living in limbo that's is so tough, even when the limbo lasts for many years. One cancer patient told me, and I've heard this expressed by other cancer patients, that sometimes they think hearing the cancer was back would be easier. At least they would know they could expect a shortened life and plan accordingly. They could finally quit waiting for the other shoe to drop. The waiting and wondering and feeling vulnerable would be over. But then that thought triggers guilt at not feeling grateful for still being alive when so many others have lost their battle with the disease.

We kind of miss the days when we didn't live with the fear of dying, or on the flip side, when we didn't have to feel guilty if we ever seemed ungrateful for a single day that we are still alive.

There's a story that has been used to describe what cancer survivors feel, especially around testing time. It is called Damocoles Syndrome, based on the myth of The Sword of Damocoles:

http://www.geocities.com/Hollywood/2549/damocles.html

A fellow cancer survivor said this about even good results: "It's like you get a reprieve and can go on pretending to have a normal life again for a while...until the next cause for concern hits."

This time was a little bit worse for me.....my husband, who has been my number one support person throughout it all, is also nurse. I get my scans done at the hospital where he works. I told him I was anxious about my scan results after waiting about 36 hours, so he told me as soon as he got to work he'd pull my scans up on the computer and call the results to me.

He never called.

Well, in my cancer survivor mind it had to be because the scan results were bad this time (remember I had a slightly elevated CEA) so he didn't call because couldn't tell me over the phone. Maybe the scans hadn't been read so weren't available yet, but then he wouldn't he call me and tell me that, wouldn't he?

On the off chance that he'd just forgotten to get my results, I finally called him right before his shift was over after eight hours of thinking the worst....if the results were bad I'd know within an hour anyway, so I had nothing to lose. And I would have hated to find out he'd forgotten and to have to wait another 24 hours for results.

Turned out he HAD forgotten to pull up the results and did as soon as I called him.....and they were fine. He didn't understand scanxiety.

Now I can live kind of normally, until next time.

Thursday, January 3, 2008

Whew!!!!

I got my CT scan results back, they were fine, no cancer. It was a long 36 hours waiting for the result, especially in light of the slightly elevated tumor marker, but I've had to wait longer before. So I feel so relieved...and glad that I can not do another CT scan for a year.

Thank you to the many of you who sent prayers and good thoughts my way, they were very much appreciated.

Tuesday, January 1, 2008

CT Techs and CT Scans

Happy New Year! I started this blog one year ago today...very cool I've had another one-year landmark. I celebrate them all now.

I just drank my first pint of barium, more tomorrow early, more when I get to the hospital, and of course the IV contrast as always. I made up my mind long ago to enjoy the taste of barium, and I do! Mind over matter. I liked mint better than the new Berry Smoothie, but my radiology department doesn't offer a menu of flavors, just Berry Smoothie. I decided I'll make that my favorite flavor now.

I also know what to wear to a CT scan now. Leggings, bulky shirt or sweater and no bra. When they tell me to change into a hospital gown, I tell them that won't be necessary as I'm wearing non-metalic clothing. So I get to do my CT scans fully dressed, no humiliation of a hospital gown for me anymore! I think this will be my tenth or eleventh CT scan. I'm good at CTs now, I know the ropes.

And I guess I'm blessed to have been around to have this many scans.

I was thinking of the poor techs who do our scans, I wonder if they realize how closely we watch them. I know I have always watched their body language and facial expressions very closely. If they seem too serious or aloof, is it because they see something bad on the scan and want to keep a professional distance? If they don't say much, is it because they can't tell us what they saw, our doctor has to tell us? And if they are too cheerful, are they trying to cover for the fact that they have just seen a mass on our scan and don't want us to know? Only once have I had a CT tech who knew I was a medical professional confide to me "Hey, it looks fine to me, I didn't see anything!" The rest I've scrutinized endlessly.

Then of course it's the waiting game for the results. Every time the phone rings I worry it might be the oncology office calling with a bad result. If they don't call, then I sometimes worry that the scan result got faxed to the office and was missed in the pile, and no one saw it....maybe there was something on it that needed to be seen but was missed? I'm a medical professional, I know that happens sometimes. The worst I think was when I came home and someone had called but hung up without leaving a message on my answering machine...maybe it was the oncology office and they didn't want to leave bad news on the machine? Of course now I have caller ID so I can confirm that.

Sometimes I have a friend or my husband just pull up my results on the hospital computer. Sometimes I go to the hospital radiology department and just sign for a copy of my results. Sometimes I make an appointment to get the results from my doctor...once when I was there waiting for my results my blood pressure was 180/110. Guess I was nervous? Would have been kind of ironic I guess if I'd had a stoke while waiting for the results of a CT scan that was fine!

I know we all go through it. I guess it's character building. And it's so wonderful when we get to celebrate good results and to know we have a long stretch of time before the next scan.

I wish that for all of us.