Once I had a basic idea of how to put together a web site from the class, I did on-line tutorials to learn more. I learned about web hosting and code and templates and tables and hyperlinks and frames and FTP. I became obsessed with putting together my web site, Appendix Cancer and Peritoneal Surface Malignancies. I was driven. I had to learn a lot to do it.
The toughest part was re-reading all of the medical literature I’d read initially when I was diagnosed. The horrible statistics, the grim predictions, the detailed surgical reports. Emotionally it took me back to the horrible feelings I had when I first learned what I was up against. I thought of those who suffer post traumatic stress after returning from war.
Interesting, many who have been through tough cancer battles are now being diagnosed with post traumatic stress syndrome. I recently read of a breast cancer survivor who decided one day to wear a scarf. Turned out the scarf she chose to match her outfit was one she had used to cover her baldness while on chemo. On seeing the scarf in her drawer, she became physically ill. In the end she disposed of all scarves she had worn during that time. This is an interesting article, Post-traumatic Stress Disorder and Cancer . I’ve since communicated with appendiceal cancer patients who have been diagnosed with PTSD. Constructing the web site was hard enough for me emotionally that I joined a support group for the first time.
I published my web site early in 2006, almost the anniversary of my 5 year survival. I had a contact email on my site, but didn’t know if I’d hear from anyone. It just made me feel I’d done the right thing by making the information I knew accessible on-line. I didn’t really plan a life of cancer advocacy after that, I just wanted to create and publish the web site.
But then doors opened, then my world expanded. I think I discoved my purpose.
I tried to leave the cancer world, at least as much as I could while still seeing an oncologist regularly and being tested for cancer every three months. I tried not to focus on cancer, to go back to my “normal” life, but I learned the hard truth of surviving cancer, we never really go back to our “normal” before-cancer lives.
I’d also had to explore and redefine my faith. I never believed there could be no God. I have a mind that loves science. I can’t believe there is not an intelligent designer of life as we know it. A scientist calculated the odds of life being the result of random chance at 1 in 10 to the 40,000 power…about the odds of “having a tornado tear through a junkyard and form a Boeing 747 jetliner” (Sir Fred Hoyle speaking at the British Academy of Science). I loved the book The Science of God, written by a Jewish physicist with a PhD from MIT.
I was raised Christian, but still explored and compared other religions, I was never good at doing something just because I was told to do it. In the end, many years ago, I became a Christian. My earlier experiences in churches made me uncomfortable, so for many years I did not attend a church. My best place to worship still is not in a church, but amid beautiful trees and wildflowers and lakes, where I am surrounded by the works of my intelligent designer. That’s the first place I went when I received my cancer diagnosis, the place I go before every CT scan, the place I go when I am afraid or feel alone.
Faith puts a twist on a cancer diagnosis, though. Cancer doesn’t mean a potential ending to your life, your life is eternal. You never die, just change locations. And we will all someday cross the death threshold, so we don’t really “beat the odds” by surviving, the odds are a terminal fate for all of us. I wanted only two things after my cancer diagnosis. To raise my kids to adulthood, to not abandon them, and to make whatever time was left in my life meaningful. I wanted my life to make a difference. That’s all. No more retirement plans. No more plans to live to old age.
I recently read a book by Mark Batterson that I loved. He put into words what I think now;
“I am not convinced that the date of your death is the date on your gravestone. Most people die long before that date. We start dying when we have nothing to live for. And we don’t really start living until we find something worth dying for” (Wild Goose Chase).
Lots of people live to an old age long after they’ve died inside. In another book of Batterson’s he cites research presented that indicates “the greatest human fear is having lived a meaningless life”. I believe that’s true.
A few years after my diagnosis, I came into contact with others diagnosed with appendix cancer who were told, as I was, that there was not available treatment. They were told they were terminally ill. People who wanted to live long enough to raise their kids, like I did. People who didn’t know how to find and read medical literature. I felt it was wrong of me, as a medical professional who could locate, read and understand medical literature and who had read almost all of the medical information published about appendix cancer, not to share what I knew. I was a nurse, I had made a career of being the go-between in the medical community. I had a career educating patients about their disease and translating medical information into layman’s terms for the general public. As a medical professional and one of the afflicted, I was perfect for the job of educating and supporting newly diagnosed appendix cancer patients.
I didn’t know how to communicate with all of those diagnosed with a rare cancer who were spread out all over the world. The Internet seemed the only way. I hated the idea of putting my personal information on the Internet. I never gave even friends medical information or direction outside of my work environment. I never let strangers know my medical credentials. I’d always made a point to keep my name and photos off of the Internet. I wasn’t very Internet savvy and had no clue how to design a web site.
But I signed up to take an 8 hour evening class in beginning web site design at a local high school. I couldn’t afford the software for the class, so for the first time ever tried out EBay and found it for $35 (my first financial dealing online with a stranger, something else I’d sworn not to do).
The rest of my life changed forever with that decision.
My appendix tumor had perforated and scattered cancer cells into my abdomen, and because I had other metastatic tumors found in my abdomen at the time of my second surgery, there was a very high probability my cancer would return after treatment. It was especially likely it would return as I had a very high grade tumor that statistically had poor outcomes in other patients. Signet ring is a fast growing and very invasive type of cancer that can be resistant to chemotherapy. Even with advanced treatment for my cancer, my long term outlook was very uncertain. Many with appendix cancer suffer recurrences.
I learned that in the cancer world, the toughest time isn’t when we are going through the surgery and chemo, but the long time afterwards when we have to watch and wait after we have put down our cancer-fighting tools. Finishing chemo was difficult, chemo had been my security blanket. I was in treatment for almost a year. In hindsight, the year of treatment was the easy part. The living in limbo between cancer tests, the feeling vulnerable, the knowledge that my world could potentially fall out from under me with every test made the first few years after treatment very difficult.
I felt better after three years, but I still felt vulnerable even after that. I’d learn of people who’d succumbed to recurrences at 4 and 5 years. I think after cancer we all feel some degree of vulnerability for a long time, maybe forever.
After I finished treatrment, I didn’t want to go right back into clinical nursing. I’d been in hospitals and doctors offices so much, I wanted a break from the medical environment. I worked for a bit in an assisted living facility (around lots of people who had made it to “old”) and taught at a local college. I put all of my paychecks towards my medical bills. I started doing a lot of volunteer work. I delivered meals to the homebound elderly, I ran a soup kitchen, I started a service group at my church, I did free musical entertainment at nursing homes, I mowed elderly neighbors lawns and raked their leaves, I participated in our communities Christmas in September rehabbing houses for the poor. I’d done some of that before cancer, but now I did a lot more.
Volunteering did a lot of good things for me. It kept me busy and kept my mind off of cancer. It was good for me in that it entailed no real commitments; I had trouble making commitments after cancer as my future was so uncertain. Volunteer work also made me feel good as I was helping others in need, meeting great people and getting my mind off of myself. I had a great need to give back; I had been given so much by so many people through my own tough time. I had a great need to make my life purposeful, I think I needed to feel worthy of my survival, to be deserving of it.
I had actually been struggling with purpose before my cancer diagnosis. I was thinking of a career change maybe, a new direction. The whole mid-life time for reflection and reassessment, the need to make sure my life counted, that I was fulfilling my purpose in life, doing what I was meant to do. I think maybe all of us get to that point. About that time The Purpose Driven Life, Pathways to Purpose and lots of similar books were bestsellers in bookstores. Maybe us baby boomers were all hitting middle age and wanting to make sure our lives counted, that we were doing something meaningful with our lives.
Surviving cancer made me obsessed with a need to find purpose in my life, though. I’d seen so many lose the battle. I’d been told I was not going to survive and I had, at least for awhile. I went through a phase where everything I did had to have meaning and be important, I didn’t want to waste any of the time I had been given.
But I wouldn’t volunteer in the cancer community. Even when I was asked to talk to someone newly diagnosed with cancer I couldn’t do it.
I tried at one point to put cancer behind me and to leave the cancer community and world behind, but it was kind of strange. My perspectives had changed in some ways that only another cancer survivor could understand. I couldn’t deny the impact my cancer experience and the living in cancer limbo had had on who I was.
Almost four years out from my diagnosis I joined a support group for the first time. I actually felt a reassurance in being with others who struggled with cancer, even those who would not survive, who knew they were terminally ill. I thought terminal cancer patients would make me feel vulnerable, but they didn’t. They made me feel at home, understood, we were warriors in a fight against our common enemy. We lit candles for each one in the group who had died to signify their presence and our memories of them. The group was honest. They understood my reality. They went to each other’s garden parties and funerals, they supported each other. They didn’t spend much time crying or feeling sorry for themselves. They compared notes on what helped with chemo side effects, cheered each other on when they’d reached a milestone, compared their experiences with oncologists.
I didn’t stay in the group long as I felt my membership represented my weakness in needing support. In hindsight, I should have stayed. Cancer has made me understand we all need community. Those of us with a cancer diagnosis or history are reassured by others who share our struggle and our history. We are family in a sense.
I don’t like the name “support group”, somehow the name conger’s up images of people who are weak and can’t take it and want shoulders to cry on. Cancer survivor groups should instead be elite clubs for only those of us who have battled or are battling cancer. Kind of like a VFW, you’d have to apply for membership and meet the cancer diagnosis requirements to be accepted. We’d have halls and dances and parties and offer services and be a resource for those newly entering our community. We are actually kind of the same, we are not veterans of a foreign war, but of the cancer war. And just like veterans find a need for community when they come back from war, those of us who have fought cancer need to be around our fellow warriors sometimes.
Though I left support group, I in the end decided to stay in the cancer community. It is where I belong. It is where I am needed, where I can make a difference. It is where I feel at home. I communicate now with cancer patients every day. It’s what I want to do now. I don’t want to put cancer behind me and to not think of it anymore. It’s part of who I am.
I have a lot I need to say here, so I am going to do a series of posts. The jest of it is how cancer has affected my life and my future and my dreams. My life’s evolution on the cancer path.
My cancer journey has been very long and very difficult. Funny thing about being a long term survivor…I can’t remember now what it felt like to have a life without cancer as an impending threat. I can’t really remember a life before there was the cancer “elephant in the room”.
I’ve survived a long time now, 7 years. You’d think I would feel “cured” and feel able to go back to my old life, my life that wasn’t about cancer. Back to my old “before cancer” normal life. I think people who knew me before cancer assume that’s how my life should be now. I should be the same person I used to be before cancer. After all, I’ve passed the 5 year mark. Cancer should be in my past, I should have moved on by now. Be the person I used to be.
But I’m not the same as I was before cancer. I can never go back to who I was before cancer. It’s a universal truth those of us in the cancer community come to know and accept. Our old normal is gone. Cancer is a new part of our identity.
I feel a little less vulnerable now being a long term survivor. I feel a little safer. Cancer seems a more distant and not such an immediate threat. But I will probably never feel totally safe and invulnerable again. I will always be on guard for the bad and devastating thing that might happen. I am wiser. I am less naive. I know that at any moment the bottom can fall out of our lives. It happened to me once. I know to be ready. Cancer stole a certain innocence from me. I no longer expect life to be good, to be fair. I live in the cancer community, a place where unfairness reigns.
A woman at work recently heard my story. She was so amazed. That I had had a terrible cancer, that I had survived. And I recognized in her the me before my cancer diagnosis. The me who once heard cancer stories that belonged to someone else, stories that were distant, that didn’t affect my life. I remembered when I was like her… I put money in the jar at the gas station for the person afflicted by a terrible cancer. The other person’s family member, the other person with a cancer diagnosis. The other person with a terrible disease. Not me. I was on the outside of the cancer world then.
Now I know what it’s like to be the person who’s picture is on the jar at the gas station. To be one of the afflicted. To be the one circling the drain. I don’t hold on to tightly to anything or anyone now. I know we may be asked to let go at any time…of everything, of everyone, of our all, of our world as we know it. I know I always need to be prepared for the unexpected.
But cancer has given me gifts, made my life richer and more meaningful. More profound. I never thought I would feel this way, but I wouldn’t want to go back to my before cancer normal now, my before cancer life. I’ll talk more about that in my next posts.