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.

Wednesday, March 31, 2010

Moving forward

I'm at a crossroad in my life. I recently turned 50, and I recently became an empty nester. When my first daughter left for college, I was kind of lost. I cried unexpectedly and often. My kids had been my life, my focus and my priority for years. My life had been all about them for almost two decades. It was hard to see the first one leave the nest.

When my second daughter left for college, I dealt with it better. I'd become accustomed to your kids leaving home as the norm. I still love and miss my kids, but we are close and communicate a lot. I am so glad I got to be here long enough for them to leave me, that I didn't leave them when I was diagnosed and they were only 10 and 11 years old, when I was so central to their lives. Their leaving me, in the end, was a gift. I cherish now that they've left the nest and have become their own adults separate from me.

I now love seeing my kids become independent adults with lives that don't revolve around me. They have their own hopes and ambitions and dreams, I am not central anymore. I kind of love being dispensable. If I died now, my kids would be okay, they have lots of dreams and lots to live for, they could move on. They love me, but they'd be able to manage without me now. I am grateful for that.

But in the end this time in my life has also opened new doors for me. I got to thinking...the first few decades of my life involved me growing up and becoming an independent adult. The next few decades were about being a wife and mom (and dealing with a cancer diagnosis and treatment). Raising my kids was my priority; my needs didn't matter so much those decades.

Turning 50 as an empty nester, I have come to realize my remaining years, however many they are, can be mine. I've fulfilled obligations the first 5 decades of my life. Now I can focus on me! And it's okay. If I am lucky enough to live to be 70, I have two more decades to grow, to realize dreams and to develop new relationships without so many other obligations. It's kind of liberating. I suddenly want so much. I am willing to plan for a long-term future; even though I understand after cancer it is not guaranteed. I am back in school and loving it, I love learning, and I love growing. I love connecting with students and professors. I am looking towards a new career path. I am remodeling my kitchen. Redecorating my bathroom. Finding hope in looking towards a future. I know a future here maybe only an illusion, but I like the illusion.

I think it's okay to plan a future and to reach for goals, even when you live with the uncertainty of a cancer diagnosis. Reaching for goals is hopeful on its own. And the cool thing is, cancer made me contemplate all future scenarios, in this life and beyond. So I know I have a future, even if it ends up not being here in this world, this reality. I am guaranteed a future regardless. Only location can change.

Maybe I am gifted in being able to finally contemplate a future. And maybe knowing my future is tenuous and not to be taken for granted will make me value it that much more, help me make that much more use of my time?

And as a side note, there are several benefits to being an empty nester, I've learned. My utility bills are about half of what they used to be, the grocery bill is way less, eating out is cheaper when it's just two, the house STAYS clean and is quiet when you want to read a book, and my husband and I spend more quality time together. We've been having a lot of fun!

The crossroads in our lives (and there are many of them) can be initially painful, but they are always new opportunities for growth and happiness.

Tuesday, March 30, 2010

Survivor Stories

I have been working with several appendix cancer survivors in hope that they will write their stories for me to post to my website and blog. Alice recently posted her story, Alice's Story. I have other survivors 3-9 years out from diagnosis who have told me they will also write their stories. I will post links to their stories as I get them.

I am very greatful to those survivors who are willing to offer help and hope to the newly diagnosed, they are my heroes.

I truly stuggled to find hope when I was diagnosed. I loved cancer survivor stories then, though I read of no appendix cancer survivors. I never even knew of another diagnosed with my cancer when I was struggling with my long odds. Ours is a lonely cancer.

Again, I am so grateful to those who are working to help me with this project and will post stories as I get them!

Monday, March 22, 2010

Living With Uncertainty

I had an interesting discussion with my husband tonight. A co-worker our age that we both liked and respected passed away a few days ago. When I heard he had a terminal diagnosis, I right away assumed he had cancer. He didn't. He had something similar to mad cow disease, but an inherited prion disease. Prions are small bits of protein that are indestructible by heat or disinfection but when abnormal, destroy the brain, the nervous system. His grandfather had died of the same disease, he inherited it. There was nothing he could have done to prevent it, no medical treatments available. A healthy lifestyle would have made no difference. The disease is always fatal.

We talked about those who may have inherited fatal genetic diseases, like his, or like Huntington’s. If you could, would you want to do the genetic testing to find out if you carried the disease and would die of it before you ever hit old age? Would you want to know you would die young?

My husband thought knowing would have advantages...you could get your affairs in order and live every day to its fullest knowing your time was limited.

I remember thinking I'd felt the same way...before my own cancer diagnosis. I used to think I'd want advanced warning before I died. To get my affairs in order, to plan my own funeral. To live every day like it might be my last. Maybe I wanted that sense of control...after all, I am a control freak.

But living with a cancer diagnosis changed all of that for me. Trying to live your life without planning for a future is very difficult. For several years I only planned my future between CT scans. Healthy people take for granted living with a future in mind...but don't realize it. Healthy people live thinking of future vacations, promotions, grandchildren, career goals, dreams, retirement. We are, as a society, very future oriented, I came to realize. When you can no longer assume a future, it's very hard. You feel very lost.

And the living one-day-at-a-time that is so glamorized (but not in the cancer community) is also difficult. I tried it for awhile after I was diagnosed. Since I had to make the most of every day, I felt guilty watching TV, sleeping in, relaxing. I was afraid to reprimand my kids even if it was justified (what if that was the last thing I ever said to them?). When I tried it I felt everything I did had to be profound and meaningful. Making the most of every day is hard work; it's not a normal way of living. It's a lot more than just "smelling the roses".

Since a cancer diagnosis and dealing personally with my own probable demise, I have changed my point of view. I hope in the end I die suddenly; a plane crash (I have NO fear of flying now), or a heart attack or car accident. Something sudden and quick and unanticipated. I don't want to live my life in the shadow of anticipated death. I know we all will die one day, but I want to live the rest of my life not thinking about it. I want the naivety I had BC (before cancer). The assumption I had that I would live until I was old and my body was worn out and used, that I would live past the time I had achieved all of my goals.

I think the one plus of a cancer diagnosis is that it makes us grow spiritually. While I don't ever see cancer as a "gift" it does make us grow and develop our character in ways we wouldn't have otherwise.

My big hope is that our friend and co-worker who recently died was brain damaged enough not to be aware he was dying. Maybe he never had to try to live one day at a time...and I hope he never got his affairs in order before he passed. I hope that he was not aware of the fact that he was dying and leaving his wife and four kids. I hope he was oblivious to his transition and never contemplated his own death.

The living with terminal uncertainty on every level is the hardest part.

Monday, March 15, 2010

Can you help? Survivor Stories Needed!

Dear Readers,

I have been in the appendix cancer community now for almost 9 years, I was diagnosed March 29, 2001. I have communicated with about 800 people newly diagnosed with appendix cancer and with their families since my own diagnosis.

Many learn of those who have lost their battle or read some of the more dismal statistics. Ours is a very difficult cancer. I've communicated with a few appendix cancer patients who have also had breast cancer, they've said breast cancer was a breeze in comparison. I kind of think if I am ever diagnosed with breast cancer, it will be kind of like a cold in comparison to pneumonia. Short-term chemo, minor surgery, great survival stats, lots of support and research, and lots of public awareness...though I would lose my hair with that chemo. Much different from our massive surgeries, prolonged surgical recovery, prolonged chemo and absence of support. Ours is a difficult and lonely cancer. Hope is hard to find sometimes.

I have had patients ask me if there are other long-term appendix cancer survivors out there. I know there are...not as many as have survived breast cancer, but I know we do have some. I have been contacted by a few, but only a few long-term survivors. I think most who find me and contact me are the newly diagnosed, though I think it's interesting that some long term survivors have found my site. They are still googling appendix cancer even years down the road. It never really leaves us, we never fully move on and forget the battle that forever changed our lives.

My good friend who recently passed asked me if I could find a way to add survivor stories to my blog and website. I would love to do that. We all need hope.

I am asking for anyone who is a long-term appendix cancer survivor (3 years or more) to share their stories. I could post them as guest posts on my blog, or if you are willing, I would create permanent links to survivor stories on my both web site and blog. The stories would need to include your pathology (mucinous adenoma, mucinous adenocarcinoma, adenocarcinoid, signet ring etc.) along with tumor grade (well-differentiated, moderately differentiated, poorly differentiated etc.). If you are a long-term survivor, even with recurrences, that also counts. One woman wrote me who has survived appendix cancer for 20 years with periodic recurrences...she has never been cancer free, but married, had a child and has lived a full life WITH appendix cancer for two decades.

If you are willing to share your success story that so many desperately need to fuel their battle, please consider helping those newly diagnosed.

If you are willing to help, please email me at carolyn@appendix-cancer.com.

And a very heartfelt "thank you" in advance.

Carolyn

Thursday, March 11, 2010

Integrative Cancer Care

I have a kind of fun story. I outlasted my initial oncologist, she retired and moved to California. My oncology practice told me they had assigned me a new oncologist. I was upset at that, I told them I chose my own doctors, no one picks them for me. I was a nurse and checked around the medical community before seeing a doctor, I made my own informed decisions, thank you very much. They told me the oncologist they assigned me was new to the practice, to please give him a chance, they liked him. I reluctantly told them I would see him once and make my own decision.

Well, I fell in love in a doctor/patient kind of way. When I first met him we talked for 2 hours before even he examined me (think we kept a lot of other patients waiting)...about the latest in cancer research, about books it turned out we were both reading about oncology, about the latest advances in cancer treatment and integrative medicine. We talked about the unmet needs of cancer patients.

When I told him I had initially been rejected for treatment at a large university hospital in a neighboring large city, he immediately told me the name of the surgical oncologist who had rejected me (how did he know that??). Turned out he had worked with that particular oncologist and had left that practice in part because of him. He told me of his dream to make our large cancer center more integrative and holisitc. To offer accupuncture, exercise programs, dieticians, support groups and social services (to date the practice offers only office appointments and chemotherapy). He wants a new building complete with gardens. He cares about the depression many cancer patients, especially those aged 30-50, suffer (I was once one of those!). Turns out he even refers appendix cancer patients to HIPEC specialists and communicates with the same specialists I do!

I share his dream...we as cancer patients are more than just a medical diagnosis, we need so much more than office visits and chemo. The two biggest cancer centers in the states, MD Anderson and Memorial Sloan Kettering Cancer Center, now offer integrative medical services. That needs to be a part of every oncology practice.

Turns out my new oncologist wants me to work with him in accomplishing his goals in the future...that would be my dream job!! I hope it one day becomes a reality. I recently told him I do a lot of work in the cancer community for free, I'd work for him as a volunteer. Hope he takes me up on it! I truly hope I get to be a part of his dream...and I'm keeping my new oncologist!!

Tuesday, March 9, 2010

Herbs and Botanicals

I've been learning more about herbs and botanicals in cancer treatment lately. My friend who recently passed had been a nurse and med school student and chose to use several alternative treatments, including Chinese herbs, IP6, curcumin and a few others. For her they didn't work, but she also started them when her disease was very advanced and beyond western medical treatments. In the end she felt one of her herbals caused her cancer to advance. Her CEA went from 300 to almost 2000 just a few months after she began using one herbal therapy, her CEA had not increased for over a year before then.

I think many believe over-the-counter herbs and supplements are universally safe, they are kind of seen as "vegetables" since they are from natural or plant sources. But that's not always true. St. John's Wort, an over-the-counter herb used to treat depression, can interfere with the effectiveness of some chemotherapies (it would have reduced the effectiveness of my particular chemotherapy by 40%). When everyone was sure anti-oxidants were healthful, one study found an almost 30% increase in lung cancer in smokers who took large doses of Vitamin A. Too much folic acid, a vitamin (more than 1mg a day), is thought to promote cancer growth.

Interesting, patients on the chemotherapy Velcade found that drinking green tea prevented all chemo side effects...it was found that the reason it prevented side effects was because blocked the action of the chemotherapy altogether and made it totally ineffective.

This is a great series of short videos published by Memorial Sloan Kettering, one of the nation’s leading cancer treatment centers (where I was treated): Understanding Herbs and Botanicals in Survivorship. The lectures discuss nutrition, herbs, supplements and alternative and complementary therapies. They are worth watching. I'm adding today the link Ester posted in her comment, another great resource, About Herbs and Botanicals also offered on MSKCCs web site. I've put the link on my site a few times before, but not for awhile. I probably need to add it to my sidebar!

I was recently accused of being anti-alternative and anti-complementary therapies. I am not, though I prefer to go with treatments that have been tested and proven in clinical trials. It's interesting; I have become very involved with the Alliance for Global Conservation and will be traveling to Washington DC in the near future to help with their efforts to preserve natural resources for pharmaceutical use...70% of current cancer drugs are derived from natural sources. My most effective chemo drug was derived from a tree, the Chinese Happy Tree...in essence a refined and tested herbal therapy. Plants evolve over hundreds of years to produce chemicals to protect them from disease, and some of the chemicals they produce also help us prevent and conquer disease. Many drugs I give as a nurse...digoxin, coumadin and many antibiotics are derived from plant sources.

Sometimes I scratch my head when patients tell me they don't want to use chemo as they prefer to use herbal "natural" remedies...many of our chemo drugs are refined natural and herbal remedies derived from plants and nature. Some tell me they don't want the "poison" of chemotherapy...well, maybe the chemicals in the chemo were "poisons" the plants developed to protect them from disease and threats.

For what it's worth, I do drink green tea for health benefit, and I drink soy milk sometimes (it tastes an awful lot like regular milk, which I love, but has a longer expiration date!). I also take an herbal, milk thistle, as studies have shown it to protect the liver from toxins, and I am on a high dose of another drug for my RA that can cause severe damage the liver. I have checked, it won't interfere with any medications I am on. I don't really know if it protects me, but for me it seems harmless and may be of benefit...or maybe I'm wasting my money, but it's not real expensive.

I guess what I think is most important is to tell your oncologist if you are using any herbal therapies or supplements (including green tea) in case they will interfere with your cancer treatment. As a nurse, we used to ask patients what prescription drugs they used, we now also ask them about herbals and supplements they take in case they might interfere with other prescription drugs we give them. We need to cover all of our bases.

Monday, March 8, 2010

I'm Back!

Just a quick update! My husband and I returned from our vacation this weekend, it was wonderful. The weather was cool for the most part, so I didn't wear a lot of the shorts and tank tops I brought, but did wear a sweater and jacket several days (so glad I brought them!). The temps were in the low 60s for about 4 of the days and in the 80s for two. I did manage to get a bit of a tan, though!

It was still so nice to be away from 20 degree temps and to see green and flowers and NO SNOW!!! We were in the Bahamas for a day, and then in the Virgin Islands. We took a catamaran from St. Thomas to St. John and spent some time on a beach in St. John. We also visited St. Maarten, a very beautiful island. We went near a private island in the Virgin Islands that is for sale on Ebay for 12 million dollars! I was surprised that the Virgin Islands are mountainous...they are beautiful! I wanted to camp there, beautiful wooded mountains, some islands seemed uninhabited and just waiting for a backpacker like me! Fun coincidence, while there my backpacking buddy texted me to say it's almost backpacking season and we need to start making plans!

We came back to still some snow on the ground, but it's melting and temps are in the 40s and 50s. So hopefully spring will be here very soon!