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

Sunday, May 31, 2009

Things we have in common....

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

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

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

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

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

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

Saturday, May 23, 2009

Scanxiety

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

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

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


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

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

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

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

It never gets easier.

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

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

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

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

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

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

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

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

Wednesday, May 20, 2009

My Silver Lining

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

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

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

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

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

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

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

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

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

Monday, May 18, 2009

Survivorship

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

Here goes.

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

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

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

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

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

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

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

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

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

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

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

Saturday, May 16, 2009

8 Years Cancer Free!!

Today was a fun day....cool coincidence; my 8 year anniversary of being cancer-free (eight years ago today I had my cytoreduction surgery in which all cancerous tumors were removed) coincided with the annual cancer-survivor luncheon hosted by Cancer Health Treatment Centers, the local oncology practice where I received my IV chemotherapy and follow-up after my surgery and peritoneal chemotherapy in New York.

The luncheon is held annually at a very nice hall with great entertainment and guest speakers. It is attended by at least 250 survivors and their guests. The program lists all of our names, our primary cancers and our years of survival. I love reading over the names and especially love reading of long term survivors of difficult cancers, like ovarian, pancreatic and lung cancer. For the past 8 years I have been the only appendiceal cancer survivor listed.

My daughter, who was 11 when I was diagnosed, attended with me...she is home from college for the summer and 19 now. My youngest daughter will leave for college also in August, she is now 18. She is attending her senior prom tonight.

I remember when I was diagnosed I just wanted to live long enough to see my kids graduate from high school. I made it! I've lived long enough to raise my kids to adulthood. People ask me sometimes if I have now set my goal at seeing them graduate from college or married, if I have set my goal at living long enough to possibly meet grandchildren...but I haven't. If I get those years, they will be bonus years. I already got what I asked for, and if that was all it would be enough for me. Asking for more would be like asking to win a multi-million dollar lottery twice. I've known of many who have not made it this far, I'm grateful for the time I've been given. I'm very grateful to have had the last eight years to spend with my husband and kids.

Sunday, May 10, 2009

Update

I'm sorry I've not updated sooner....life has been kind of busy. I stayed two extra days in Colorado and went to visit a relative there and to do a bit of site-seeing. After I returned I was out of town for a couple of days again to see my daughter's final symphony concert for the year at her college. We also brought her back home from college for the summer, and my youngest is getting ready to graduate. In the midst of that I've been working pretty much full time in my ICU.

Today for Mother's day my family and I got up at 4:30AM and took the train to Chicago for the opening of the Walk to Empower in Grant Park. Thirty thousand people were there for the 5K walk/run. The Walk to Empower is a breast cancer fundraiser for research dollars. We were there to support my sister-in-law (sister!) as she was recently diagnosed with advanced breast cancer at the age of 49. She is tolerating chemo well and has reached the halfway mark in her treatments. She is a special person; her team consisted of about 20 family members there and 80 more of her friends and coworkers. She's a special and popular lady that many people love! I feel badly I've not been able to talk to her a lot recently, she lives a few hours away and we don't email, and she's not wanted to talk a lot on the phone (I remember that feeling!). When we do see each other and can spend time together we have a lot to talk about, and I can be a lot of support to her. We communicate on a different level now than the years neither of us was in the cancer community.

My kids struggle with all of the attention breast cancer gets sometimes, and it does. They want to see walks and research dollars raised for appendix cancer, though they do understand that breast cancer is much more common and effects more people, so gets more attention. Appendix cancer and PMP are orphan diseases.

There are some new PMP walks, now though. There is the PMP Cancer Walk in honor of Frank “Dutch” Culbertson, who succumbed to PMP in 2006.

I think there will one day be more; I'd like to start a bike trip for appendiceal cancer research dollars someday.