Health | Mesothelioma | Cancer » Appendix

All or nothing?

admin — Thu, 22 Jul 2010 18:48:55 +0000

It’s interesting. Since my own diagnosis, my view of cancer and cancer treatment has changed. I think many of us have thought of cancer as an “all or nothing” disease for a long time. We are either cured or we aren’t. We survive or we don’t survive. Our cancer is either gone or it’s there. The only good outcome is that our cancer is gone and we move on with our lives intact cancer-free.

We feel having cancer means we are on a path to death, and having no detectable cancer means we might have a chance of staying alive. All or nothing.

But I met a woman when I was in chemo who had been receiving chemo weekly for 4 years. She was not cured and she was not dying. She had a tumor that could not be removed surgically, but the tumor had not grown or spread or threatened her life in 4 years. She tolerated chemo well, and aside from living 4 hours of her life weekly in the oncology chemo room, her life was pretty much normal.

I’ve since been in contact with 2 long term appendiceal cancer patients who have never really been cancer free. They have been eight years and twenty years with appendix cancer recurrences. And in the meantime, between treatment, they have valiantly lived their lives. Productive lives. Meaningful lives. Lives that aren’t just about cancer. They have survived in spite of cancer. Raised kids, pursued careers, lived lives…with appendix cancer.

I got to thinking about that. I was in chemo for about 4 hours once a week for many months after I was diagnosed. Not bad, but not how I would have chosen to use my time under other circumstances. But I’m a nurse. For years I’ve seen dialysis patients. Patients who live their lives hooked up to dialysis IV pumps for as long as we are hooked up to chemo pumps….but three days a week…for years. And they live long and productive lives in spite of that. Their lives are altered, but they still live. They still contemplate a future; they tolerate dialysis as they await a possible transplant and a new normal life.

I have now been exposed to many scientists involved in cancer research. They are so close to so many breakthroughs. There may come a day in our lifetime when there is a cancer cure…if we just wait and stay in treatment. Just like dialysis patients remain in treatment while they await a kidney transplant. The day when they can live without being in treatment.

That day that may come for us. The day cancer is defeated.

I want to be here to celebrate that day.

Up in the air….or not?

admin — Tue, 20 Jul 2010 16:20:27 +0000

My San Diego flight is up in the air…..or rather grounded at the moment, due to the American Airlines aircraft inspections. A friend emailed me to let me know of the problem, and my flight is involved. Just kind of a wait and see thing I guess, to find out if my flight will be reinstated by Friday or if someone can find me an alternative flight. My daughter thought it was great they were doing the safety checks before I got on the plane, I probably would have preferred it became an issue after I had landed…I’m okay with living dangerously nowadays! Here’s hoping they get it straightened out quickly! I’d hate to miss any of the San Diego event.

Just a P.S., I’ve added a survivor section to my blog, check the sidebar on the left. I’ve added links to the stories of inspiring appendix cancer survivors who have reqested to be part of my site. If anyone else owns a site they’d like me to link there, let me know!

Thank You CR Magazine!

admin — Sat, 17 Jul 2010 23:23:21 +0000

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

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

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

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

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

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

Telling our kids

admin — Fri, 16 Jul 2010 03:29:05 +0000

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……

Survivorship

admin — Fri, 16 Jul 2010 00:55:54 +0000

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.

This Times a Charm Blog Book Tour

admin — Thu, 15 Jul 2010 07:01:56 +0000

I’m doing something new and fun here! I was asked to participate in a blog book tour, a new concept for me, but one that was intriguing. I’ve read several books by cancer survivors, so it is a great honor to be able to support the author of a new publication, This Time’s a Charm: Lessons of a Four-Time Cancer Survivor, by Donald a Wilhelm. Donald survived cancer four times in a five year period. His book documents his amazing journey.

Over the next couple of weeks, several bloggers, including myself will post reviews, podcasts, interviews with the author etc. on a rotating schedule. “This Time’s a Charm” Cancer Blog Book Tour Schedule is as follows. The book tour begins today with an interview with the author at Fight Pink. Enjoy!

2/16/09 www.fightpink.org
2/17/09 www.cancerbookreview.blogspot.com
2/18/09 www.uniboobclub.blogspot.com
2/19/09 www.moutray.wordpress.com
2/20/09 www.makesomelemondae.com
2/21/09 www.awesomecancersurvivor.com
2/23/09 www.serendipityfactory.com
2/24/09 www.everythingchangesbook.com
2/25/09 www.cancercornerlive.blogspot.com
2/27/09 www.appendix-cancer.blogspot.com
2/28/09 www.discoverpetoskey.com
03/1/09 www.route53.wordpress.com

Announcement

admin — Thu, 15 Jul 2010 02:57:36 +0000

In my post of October 10th, I said I was going to talk about my latest advocacy venture. Here goes!

After publishing my web site, I became involved with many diagnosed with appendix cancer who emailed me after discovering my site. I’ve also communicated with those who have abdominal cancers of origins besides appendiceal cancer and who often seek the same treatments from the same specialists. They deal with all of the same issues those of us diagnosed with appendix cancer deal with. Except for cancer origin, all of our issues are the same. We all have “peritoneal surface malignancies“, or advanced abdominal cancers.

My email communications now number in the thousands (I REALLY need to learn to type!). I’ve used hundreds of cell minutes talking to the newly diagnosed, and I now use Skype to communicate with some internationally. I’ve communicated with patients from all over the United States and all over the world including people from Norway, Ireland, the United Kingdom, Canada, Mexico, New Zealand, Asia and even the Aland Islands (had never hear of them, they are islands off of the coast of Finland). The Internet is amazing in the ability it gives us to reach into distant lands. In my quest for up-to-date information I’ve also communicated with many of the elite surgical oncologists who treat these cancers. I’ve been amazed at how generous they have been with their time and resources.

Sometimes all of these activities, in addition to maintaining my blog and site, have taken about 20-30 hours a week of my time. I have never minded that use of my time; I am blessed to be able to use my life in that way. Before and after my cancer diagnosis, I had struggled with a need to find meaning and purpose in my life; I feel I’ve found my purpose now in the cancer community.

I met a new friend through my involvement with the American Cancer Society, turns out she is a business consultant in her real life. She knew the work I did, and suggested I might turn my passion into my profession. At the same time, the husband of another patient who was a business entrepreneur and who lived across the country (and who didn’t know anything of the other conversation) suggested the same and introduced me to the founder of a cancer non-profit nearby in Chicago. Another woman found my web site and said I reminded her of someone who had started out just like I had as a patient advocate and had gone on to found the Kidney Cancer Association that now serves thousands diagnosed with kidney cancer. I was suddenly all at once inundated with that suggestion through many unrelated sources. It was almost spooky. My daughter said “Mom, do you think God is trying to tell you something?”.

The idea of a business venture and social entrepreneurship was totally out of my realm of experience and knowledge, but I started to consider it. And all of the sudden I was given resources to help me achieve that end. The business friend introduced me to the Entrepreneur Center at a local college and to people who were successful social entrepreneurs. The entrepreneur center suggested I take a business class for entrepreneurs that was just starting and still accepting students. From that point on, doors have amazingly opened one after another in ways I never would have expected or anticipated. I love the saying “God doesn’t call the equipped, he equips the call”. I suddenly was being equipped in an overwhelming way.

In the end I founded a non-profit organization, the Abdominal Cancer Connection. It’s a project that’s been my passion for about a year now. I actually have a board of directors and am chairman of a board! We recently had our first meeting. The woman I met through the American Cancer Society has supported me and helped me unendingly. An accountant with non-profit experience has donated time to helping me and agreed to be on my board. An attorney I met and just love helped me at a discounted rate file the paperwork to become 501c3, my organization is now officially a tax exempt charity. So far two renowned HIPEC surgeons have agreed to be on my advisory board, there are several others I want to approach. The American Association of Cancer Research allowed me to unveil my non-profit as part of their Scientist Survivor Program at their annual meeting in San Diego this year. It’s been an amazing ride.

My latest hurdle in developing my organization has been to develop a web site and web presence. I got some estimates….$2000-3000 for professional design of the site I wanted, and those quotes were the discounted rates for non-profits. Though I’ve donated a few thousand dollars in setting up the organization and have received help from family and friends, I was unable to afford professional help for web site design. I have one daughter who just started college and another starting next year, so that’s where my personal financial resources are going now. I constructed my own initial web site, but what I need for the organizational web site is beyond my ability.

I tried calling local universities to ask that maybe my site could be taken on as a class project, or asked if a student might be willing to donate their time, but without response. I made several calls looking for someone who might donate their time, no response. Then I received an email recently from a professional web site designer and software consultant, he had been the person I’d most wanted to do my web site back when I was obtaining quotes. His father had just been diagnosed with cancer so he contacted me about his dad. He knew from past communication with me that I was developing an organization and hoped to have a web site professionally done at some later date. In our communication he said he’d looked at my site and noticed I hadn’t updated it yet to represent my organization. Did I need a web designer? If I did, he’d do my site for me for free. Wow, another door opened. We met to discuss the site this week. He also has a connection to a graphic designer who can help us. We set an official launch date for the web site as February. Amazing.

I’m sorry about the length of this post. I have a lot more to say about the organization and will post more about it in upcoming posts. Stay with me!

Things we have in common….

admin — Tue, 13 Jul 2010 15:17:34 +0000

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.

Health | Mesothelioma | Cancer » Appendix

All or nothing?

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