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.

Saturday, March 29, 2008

Seventh Anniversary of My Cancer Diagnosis

Today is the seven year anniversary of my cancer diagnosis. I am blessed to still be cancer free after being told initially I was beyond treatment with a very poor prognosis. It's been a long and tough road, but my life is immensely richer than it was before cancer.

So much has happened in the past seven years related to my cancer experience and my being in the cancer community. After about 4-5 years of survival it became very important for me to find purpose in my survival and to give back. Since then these things have happened:


• I created and published my web site Appendix Cancer (Appendiceal Carcinoma) and Peritoneal Surface Malignancy and it has had 50,000 hits. I also published my blog and via my blog and website, I have communicated with over 350 patients newly diagnosed with appendiceal cancer.

• I've been in touch with over a dozen surgical oncologists who specialize in treating those of us with appendix cancer and they have all been gracious enough to support my advocacy efforts.

• My daughter's senior class published a book about 33 people they identified as local heroes. One of the chapters was about my cancer experience and my cancer advocacy efforts. My kids have also used our family's experience as the subject for speeches and papers and projects. My eldest daughter's senior Personal Impact Project was creating over 1000 appendix cancer ribbons that she's distributed to promote appendix cancer awareness. My cancer experience overall has made us closer as a family. We view life differently.

• I was recently honored by a magazine editor who read my blog and asked me to be the subject of one of their magazine's cancer blogger columns. My blog is featured in the spring issue of CR Magazine. You can click this link to read the article: Cancerblog: Cancer at any age is unfair By Alanna Kennedy

• I was invited to attend the annual meeting of the American Association for Cancer Research for 5 days in San Diego this April. There I will participate in the Survivor<->Scientist Program. I'm sure I will meet many inspiring advocates in addition to research scientists involved in the search for cancer cures. I know I will learn much that I will share here when I get back.

• I was asked by someone who read my web site and blog if I would be a contributor to a new on-line medical encyclopedia. I've written an entry about appendix cancer for the encyclopedia.

• I have founded and am in the process of developing a non-profit organization to support those of us diagnosed with advanced abdominal cancers, including appendiceal cancer, who need extensive medical treatment including cytoreduction surgery, peritoneal and/or IV chemotherapy (more about that later).

On a personal level, the time has had many other landmarks including:

• My husband and I celebrated our 20th wedding anniversary

• My kids both completed grade school and junior high school. My eldest will graduate from high school this year and begin college next year. Next year my youngest daughter will graduate from high school. It's what I prayed so hard for, to live to see my kids graduate from high school. If that's all the time I get I'll be grateful and satisfied with the length of my life here.

• I joined a Toastmaster's Club that I love and that has introduced me to several new friends. I've given 7 speeches there. I also volunteered at a soup kitchen for 2years that served hundreds of people and I made several new friends there also.

• I began playing piano professionally

• I've taken up backpacking and have been on 5 backpacking trips, including one on the Appalachian Trail, a place I'd always dreamed of going.

• I finished my first ever bicycle century, the Apple Cider Century; 100 miles in one day. It was something I'd always wanted to do.

• I celebrated 7 more Christmases, Thanksgivings and Easters and all of our family birthdays with my husband and kids. I got 7 more springtimes.

• My youngest daughter and I did a Mother-Daughter weekend in Chicago, complete with a spa day, and my eldest daughter and I were able to see John Williams conduct the Chicago Symphony Orchestra and to see Wicked performed in Chicago.

• I finally made peace with my God and for the first time in my life became the member of a church.

Life has been rich and good. I do still live pretty much one day at a time. I don't take time on this earth for granted, but now I also just see my time here as a small piece of my whole life, so I'm not as heavily invested here. And I invest more in my relationships with my husband and kids. I prioritize my time differently.

It hasn't been an easy 7 years, it's been long and hard. Surviving cancer isn't easy, it's difficult. Life has never again been as easy as it was before cancer. There have been many struggles after the initial physical battle was over...struggles mentally, emotionally and spiritually. But I am better for the battle, I think. I've tried hard to make my short life here count for more.

I truly hope I've made a difference....that I've honored the gift of my survival. That I've honored the gift of being able to see my kids grow up.

Friday, March 28, 2008

Medical Bargain Finding

I read an interesting article in the Chicago Tribune today, click the link below to read it:

For big surgery, Delhi is dealing: Medical tourism soars as Americans seek major savings on health care in hospitals abroad

This graphic was included in the article:


I remember reading about that before, and being aware that some people travel overseas to obtain comparable quality medical care for a fraction of the US cost. In many cases, paying cash for a procedure overseas is cheaper than just the insurance copay cost for a procedure performed in the US. In the Chicago Tribune article, an uninsured 55 year old man who needed a liver transplant and couldn't afford the $450,000 price tag in the US went to a premier hospital in India and paid $58,000 for the same surgery. The price including his 10 week hospital stay. I would love to know the cost in India for cytoreduction surgery and HIPEC if it is offered there. I wonder if that would be an option for those in the US who are uninsured or whose insurance denies payment for the procedure.

I had a similar experience with medical cost variations within the US. I had two portacaths. I had one removed as an office procedure in another state at a cost of $350. I had the second removed locally, but my area did not offer the surgery as an office procedure. The cost for the removal of the second port locally in an outpatient hospital surgical suite was $3500. I had local anesthesia and was awake and watched both procedures. They both were similar procedures and took the same amount of time. I remember thinking my insurance company would have come out ahead had they'd paid airfare, food, and hotel cost for me to have the second port removed as an office procedure out of state.

Apparently insurance companies are starting to pay attention to details like that and some are offering first class transportation and lodging for those willing to have procedures performed in other parts of or outside of the US.

There are other ways to save on medical costs. I tried to watch dates to stay within annual deductible dates and annual out-of-pocket expense limits. I also kept track of procedures, dates and insurance payments. I saved over $10,000 in billing errors I discovered in addition to double billings, insurance failure to pay for covered procedures and charges that I challenged the insurance company about until they agreed to pay. It took me many hours of phone calls and being on hold, but at $10,000 savings, it was well worth my time.

A cancer diagnosis and treatment is stressful enough, but the costs of medical care can cause additional stress when combined with a loss of income for those who are sometimes unable to work for several months.

It really pays to be a careful consumer in the medical world.

Thursday, March 27, 2008

Support Group Irony

I would not join a cancer support group after I was diagnosed. I was tough, I was strong. I didn't need to be in a support group with other cancer patients. Support groups seemed to me to imply weakness, they were for people who couldn't handle it. I could handle it. I didn't need help.

But deep down, there were other reasons I didn't want to join a support group or spend a lot of time in the company of others diagnosed with cancer. I was afraid I might watch someone in my support group have a recurrence and die of cancer. That I might have to support them as they succumbed to the enemy that I was fighting. Would I be able to do that? I was afraid that someone just like myself who thought they would "beat it" would lose their battle. I knew that would make me feel vulnerable, that it might destroy my resolve and certainty that I could beat my own disease. I was better off in the healthy, cancer-free world. It was safer.

I went through a very great struggle in my survival after awhile, though, after treatment. I was stuck. I was healthy, but still a "cancer patient". I was still tested often, I still saw oncologists frequently. I never new if each test would hallmark my return to the world of active cancer. I wasn't really well and normal again even though evidence had so far declared me cancer-free. I was instead in a continuous watchful waiting mode. I was just kind of on parole from cancer. No one would call me cured. So it wasn't really over. I was struggling. And no one on the "outside" could understand how I felt, I'd finished the hard part, surgery and chemo, and had good test results. Why should I be struggling in light of such a positive outcome?

Then I found the book "Dancing in Limbo: Making Sense of Life After Cancer". I was so very relieved, someone understood how I felt and even put words to my feelings. But that's because the authors were cancer survivors, so of course they could relate to how I felt.

After that I joined for a short time a "Wellness" support group for those who were struggling emotionally after treatment. Some in my group had recurrences and died. We had candles present at meetings to represent the spirits of those who had gone before us. And it was okay, the group gave me a sense of peace that had evaded me until then. It made me strong enough to reread all of the medical research about my cancer so that I could construct my web site. It helped me find the courage to become a hospice volunteer for 6 months so I could also learn how to support those who wouldn't survive our disease.

Now, since publishing my web site, I communicate with cancer patients every day. Cancer is a large and very real part of my daily life by choice.

Almost by default via my web site, I am now part of a large group of cancer patients who support each other....you could actually call it a cancer support group. The irony is that in the end I love being part of the community of those diagnosed with cancer. I love the support we can provide and accept from each other. I love the easy and natural way we communicate with each other. I love the sense I have of feeling at home with other survivors.

I got to thinking, I also love being a member of my Toastmaster's Club, we call ourselves the Executive Diction Club...it is a group that supports my objective to become better at public speaking. When I think of it, that's also a kind of support group, its just called a club. I'd probably not have wanted to join if they were labeled as a support group for those who find it challenging to speak in public.

I wonder if we should just find another name for "cancer support group". A name that sounds sheik and nifty and cool and that makes us instead sound like an elite club. Something we'll all feel privileged to be a part of considering our exclusive and strict requirements for joining. Only those tough enough to walk the cancer walk can be allowed as members. Not just anyone can join. Only the few, the proud, the cancer-afflicted can participate. We might actually have a lot of very profound fun (those in the cancer community can have a GREAT sense of humor), share meaningful insights, maybe in the end even be instrumental in curing cancer....who knows what great potential our club could have. We might change the world.

Any suggestions for a name for our club, anyone want to join? Only those with a cancer diagnosis allowed.

Tuesday, March 25, 2008

Riches

In part maybe because I'm middle aged, and in part maybe because I'm a cancer survivor, I've been recently counting my blessings. I get nostalgic sometimes. When I count my blessings, the richest blessings in my life have all been people.

My husband has loved me unconditionally for the past 23 years. He has loved me more than I think anyone else in my life ever has, he is my life's greatest blessing. I am also blessed to have very close relationships with both of my amazing daughters. They are people I love spending time with and that I would admire and love even if they weren't my children. They teach me a lot.

I have a wonderfully strong and inspiring mother. I also have three amazing sisters who are also inspirational to me. They all supported me so much even from a distance when I was diagnosed and going through cancer treatment.

And of course all of my husband's family, who have also been true family to me for decades and who were such a great support to me, especially through my cancer experience.

I left home at a young age and haven't lived near my family of origin since age 17, but when I think of it, I have always been surrounded by "family".

Richard and Dorothy were like adopted parents to me from the time I left home. They were a middle-aged couple I met when they came into a restaurant where I waitressed at age 17. She said I looked just like her daughter, who lived about 4 hours away from them. When I mentioned my parents lived equally far from me, we decided to adopt each other. We became family and played penny anny poker every Friday night, canned tomatoes together, we talked, we ate dinner together often and we spent holidays together. Their home was my second home. Though they are no longer living, they gave me many good memories of times we shared.

My father-in-law at that time and I also became very close. We fished together, worked on finishing wood together, had coffee together and talked every week. I loved him a lot. He also passed many years ago.

I had a very elderly neighbor I adopted and helped when I was 18, Anna. She taught me so much about character and what it was like to live on a limited income as a blind amputee. I have since respected the aged because of her and have adopted elderly neighbors as family ever since. I try to be the family they need as I hope my mother's neighbors are also family to her. Anna taught me that life is a circle, we all need to be each other's family especially in this day and age when many don't live near biological family.

And there's Art, my other "adopted" dad. I met him when I worked at a soup kitchen. He is a man in his 80s who is active and giving and independent. He comes by my house often for coffee, we listen to each other, we support each other, he helps me if I have a problem. He is a grandfather to my kids and never forgets theirs or my birthday. He listens to me. He gives me a hug every time I see him.

I have a best friend of 28 years who has been there and shared every important event in my life for almost 3 decades. We knew each other when we dated our prospective husbands for the first time, we stood up in each other's weddings, we raised our kids together, and are becoming empty nesters together. We've shared together college experiences, work and personal struggles and faith journeys almost our entire adult lives.

And I feel the same sense of family now with the many I communicate with who are diagnosed with cancer. We are all related, not by blood, but by disease. We share a lot. The same fears, the same anger, the same physical, emotional and financial struggles, the same sense of hope and the same sense of loss. We can say "you know how I feel" and we always do. I am inspired by so many I've met with this diagnosis. I have learned so much from them as I continue my own journey. I have been blessed to be part of the cancer community.

So, I was thinking of how rich my life has been. Rich in the best way. Rich in relationships. Rich in people.

There is no greater wealth.

Friday, March 21, 2008

From the Ashes

I don't know if "reruns" are allowed in the blog world, but I posted this one for the first time almost a year ago. I thought that because I've been talking about pain in this life, and because it's the first day of spring, maybe it would be okay to rerun this particular blog entry. Good things do come from pain. Be sure to watch the video, it's amazing.

In this entry I want to do something different. Celebrate the cancer experience.

Yes it's tough. It knocks us to our knees, it humbles us, it changes us forever. Only we who have "been there done that" really understand how it changes us, what it does to our hearts and souls and bodies. But we become part of a new community of survivors, and many of us love that community and the people we meet here. Someone spoke to me recently about the different ways each of us "rise out of the ashes" of our cancer experience. I think most of us are changed for the better.

I see life nowadays as a school, problems are the curriculum. Bigger problems are the tougher classes. Those of us living with a cancer diagnosis have been taking the advanced classes, the astrophysics courses of life. Sometimes I think of the "Why Me" part of the experience and think in reality, maybe it was because I was worthy of a promotion to advanced life courses? Maybe I got to skip a grade? At this point I am very grateful for what I have learned. I am actually thankful for the experience.

I know, it's easy for me to say that, I've already out-lived my life expectancy and made it to the 5 year mark. I've only recently been able to feel grateful for the experience.

I got to thinking that many of the truly honorable and good things I see in our society started from profoundly painful beginnings.

I am a musician, as are my daughters. One of my daughters just turned me on to this video on Youtube. Wow. I've watched it over and over. I love the video, I love the lyrics, I love the music. Please watch the video and listen to the music. It documents some great things that have resulted from very difficult circumstances.

* Nickelback - If Everyone Cared:

I would like anyone who knows of more examples like this--a difficult time someone experienced that motivated them to make a positive change in our world, large or small, to please let me know the story or to add it as a comment to my blog. I'd like to celebrate the good things that come from tough times, celebrate the good that comes from even a cancer diagnosis.

I'll start. I recently met a man who experienced some difficult events in his life (not cancer), and was motivated to start this organization. Check out his "Special Spectators Video Montage" under "Media Coverage". Be sure you have your sound on. I am proud to have recently met Blake, who founded the organization below:

Special Spectators

I have another new cancer survivor friend who started this organization:

Immerman Angels

Anyone else have examples of great things that have arisen out of the ashes of someones difficult journey?

Thursday, March 20, 2008

Why do bad things happen?

I guess it's the kind of the age-old unanswered question. I've seen lots of bad things happen over the past 25 years I've been a nurse. A toddler drowned trying to retrieve a toy from a 5 gallon bucket of water, a 16 year old felt he was indestructible and became an organ donor after losing a game of Russian Roulette, a family lost both of their children to two different types of cancer in two years, a colleague died of melanoma after decorating for what she knew would be her last Christmas with her children. A teen became a forever quadraplegic after being struck by a stray bullet in a bad neighborhood, a young mother died of an asthma attack just after giving birth to her first and much waited for daughter, my four year old disabled nephew died, a woman was diagnosed with advanced appendix cancer 4 hours after giving birth to a child she waited nine years to conceive. On and on.

Bad things happen to good people all of the time. I've been a witness to that for decades. Faith in an all-loving and all-powerful God doesn't seem to offer much protection from life's difficulties. God lets bad things happen all the time. God often answers no to prayers.

What I'd seen before as a nurse is only compounded by what I've seen as an almost 7 year member of the cancer community. Life is tough, life is hard, life is very often very unfair. The unfairness is sometimes incomprehensible.

I read several books on my journey back to faith...including many good ones by Philip Yancey. He asks the questions many of us are afraid to ask. I love his fearless honesty. Disappointment with God, Where is God When it Hurts?, Prayer: Does it Make any Difference?, Soul Survivor: How My Faith Survived the Church, Church: Why Bother?. Those are titles of some of his books. He asks the tough questions out loud, and I tag along reading his books as he searches for answers. I am grateful for the work he does for me. I have asked and often still ask all of those same questions.

In one of his books, Yancey explores a case of children institutionalized in communist Germany who were severely mentally handicapped and totally dependent. Children who never served a "purpose" in the way most of us define purpose. Many people who were involved in the handicapped children's care were later interviewed, and it turned out they had been profoundly affected. They developed patience and tolerance. They developed a sense of appreciation for wellness. They felt needed and significant. It turned out the handicapped children had a profound effect on many of the people who'd been in contact with them. The children made a difference in a way many of us who are able-bodied will never. Their lives, their suffering, had purpose and meaning.

I think of Abraham Lincoln....he grew up in poverty, his mother died when he was only 10, he was estranged from his father, both of his siblings died, the step-mother he loved suffered from mental illness, three of his own four children died before reaching adulthood. I wonder if maybe all of those circumstances in the end carved his character and made him the person who was able to liberate thousands of people, who fought for justice, who changed our country forever.

I now see this life as very short in light of eternity. We are really just here for an instant. I think now that the tough things we experience are really just short blips in the grand scheme of things. They are dark threads in a tapestry we only see from the underside now but will one day appreciate when can we see the whole work of art. Though overwhelming now, pain is actually a very temporary thing.

I now truly trust there is an artwork in progess, and I dream of seeing the finished product, of having the answers, of being able to understand what is so illusive now from our perspective here.

I trust and believe that one day we will have those answers, that it will all make sense. And I very much look forward to that day. When we will see the beauty from the ashes. It's what Easter is all about.

Wednesday, March 19, 2008

Faith

My personal faith is something I don't talk about a lot, though I allude to it here now and then. I struggled with faith for a long time. For many reasons.

I grew up in a Christian household. We went to church a lot. We wore our Sunday best and sat still for hours in church on Sundays. I didn't like the music that sounded to me like funeral dirges, and I can't remember a single thing I learned from a sermon. I felt the God I met as a child was a god who only loved me when I was stiff and formal and wearing clothes I hated while singing songs I didn't like. I dreaded Sundays, but loved Saturdays when I could climb trees in my blue jeans. When I was a kid, weekends had a good day, Saturday, and a bad day, Sunday. I dreaded heaven as I heard it was a place where we would worship God forever.....an eternity of Sundays.

My father was a good man, but like many fathers of my generation, he was the rulemaker and disciplinarian, not someone I had a personal or close relationship with, not someone I shared my troubles with or confided in. So the idea of a personal relationship with my heavenly father was a difficult one for me to accept. It was easier for me to accept a God who's relationship with us was to set rules and to disipline us when we broke them.

My eldest sister left for college when I was 13, and when she did I was crushed to lose one of my best friends, she'd been my hero until then. I was confused, though, when she came back...she had been "saved" and had become an Christian who quoted Bible verses often and talked of redemption. She made me read The Late Great Planet Earth so that when the end of the world came I wouldn't go to hell. I'd only been contemplating high school until then. I hurriedly said the sinner's prayer and bought a cross necklace just in case she and Hal Lindsey were right and the anti-Christ was in the world heralding the final Armageddon and the end of us all. My heart wasn't in it though. I didn't want to display and live the religious fervor she did, it just wasn't me. It made me uncomfortable.

Then my grandmother died of cancer. She and I had been very close; I even helped care for her when she was in the final and painful stages of the disease. She and I read many books together, books I loved...Jonathan Livingston Seagull and Khalil Gibran's "The Prophet" were two. She only left me one thing, though, when she died. A personally inscribed Bible. Just before she died she solemnly told me it was her final gift to me . She had never been particularly religious. She'd even told me once she'd rather spend an afternoon with a good book than a bunch of church ladies, though she attended church. I was intrigued at her final gift to me. So I decided to give her Bible a try. I don't know why, but I only read the gospels after her memorial service.

I was surprised by what I read. I really liked Jesus a lot. I'd never met him in my church. This Jesus even loved, accepted and spent time with people who sinned sexually and cheated other people. He loved everyone. He had the most contempt for the upright judgmental religious people and let them know that regularly. He didn't even own a change of clothes (so much for proper Sunday dress) and preached outside in the grass sometimes while providing a picnic lunch to his listeners. He attended parties and drank wine. He chose as one of his first missionaries a woman who'd been married multiple times and was living in sin. He loved and accepted everyone.

And when he died and came back, he showed everyone that you receive a physical body after death, one that can be touched and hugged. He could still eat food in his new body; one of the first things he did when he returned in his new body was to have breakfast with his friends. But his new body could also overcome the laws of physics and pass through time and space and locked doors. Wow. And when he left he didn't even leave us with a lot of rules, just asked us to love him and to love each other, even when loving wasn't easy. And if we failed at even that, he would still forgive and accept us.

I followed that Jesus until I'd been in an abusive marriage for 7 years and decided I couldn't keep turning the other cheek, I couldn't love my enemies. I left Jesus when I left the marriage in my early 20s. I still believed, I just didn't think I had what it took to be a follower.

And I stayed away. Until 2001. Until cancer. Until I met an enemy I was totally powerless against, until I needed help bigger than I could find in this world. But it was still a long and difficult road back. Full of questions and challenges and even anger.

I now have a great faith and a great trust in God. I am sure of His presence in my life. I am not a religious fanatic, I'm actually not very "religious" at all. I attend an organized church, though kind of sporadically. I wear blue jeans to church and my church has a band with drums and the minister preaches in khakis. My best church, though, where I really connect with my God, is in the wilderness among trees and birds. Where the Monarchs butterflies are, where spring wild flowers bloom, where acorns become great oak trees. I also feel that connection when I play music.

I am sorry for the way Christianity is often portrayed by Christians today. I am reading a book "Unchristian", I truly love it. I think every Christian should read it. It talks about what the Christian faith as portrayed in America looks like to many outsiders.....our image is not a good one. It talks about people like myself, who are afraid we'll alienate others when we identify our faith. My church now hesitates to use the word "Christian" to describe us as the word has come to portray such a negative image to so many. My church is trying instead to use the term "Christ followers" to refer to us. And to remind us just what a Christ follower does....just loves other people, all people, first and foremost, to the best of our ability. It is what motivated me to construct my web site and to start this blog and to try to help others with cancer.

Sunday, March 16, 2008

Emotional Recovery and Springtime

Maybe this is a bit of a confession in regards to my failings or weaknesses, but here goes.

I am a tough women. I have a very high pain threshold. I asked for my morphine PCA to be discontinued within 24 hours of my big surgery as I didn't need narcotics (I did receive Toradol, though, a great pain reliever). I wore street cloths in the hospital within 48 hours of my surgery, and would only use my hospital bed to sleep at night, I walked the halls almost all day every day. I was discharged in 6 days on only ibuprofen. I walked for 3 miles on the streets of New York City 8 days after my surgery. I was driving my car and grocery shopping less than two weeks after my big surgery. I drove myself to and from chemo, sometimes I even rode my bicycle the 5 miles to and from chemotherapy. I did athletic training while on chemo to prepare to do a century bicycle tour. I wasn't going to let cancer beat me, I wasn't going to let cancer win. I was tough.

Physically, anyway.

I always thought I was very tough mentally and emotionally too, but I have to say, the emotional and mental recovery from cancer diagnosis and treatment has been a long one.

After cancer, at first I couldn't play my piano. I'd sit in front of it and my hands wouldn't move. I don't know why, but I hear the same thing happens sometimes to other musicians in times of tragedy. I lost interest in gardening and in my bird sanctuary, I lost interest in spring cleaning. Not sure why, I just did. I recovered my ability to play piano after a short while, but I quit celebrating and participating in springtime. Springtime activities to me represented a commitment to the future, and for several years I didn't commit to more than one day at a time. I didn't want to commit to the responsibility of keeping bird feeders filled, to watering and caring for plants, to weeding gardens. I couldn't maintain garden life and bird life any more, I wasn't sure if I could even maintain my own life.

This year is kind of a landmark for me though...for the first time since diagnosis, I want to really invest in springtime. I want to plant gardens again, set up my bird scanctuary again, buy houseplants. I spent a lot of money on gardening supplies and bird feeders last night.

I can finally plan for and enjoy a potential future, I think because it doesn't need to be promised for me to feel fulfilled. I feel much less fear. I've finally lost my fear of dying, and that's a milestone that is so liberating. Death no longer represents an ending to me, just another transition. Life is, after all, transitions. And this year I want to participate in and celebrate the transition that is spring, not as a commitment, but as a promise, as a hope, as an example of beauty emerging from the dark and cold.

My newfound normal is actually very liberating. But I was slow in getting here, maybe?

The emotional recovery has been a long one and is probably still not over. But I like my new normal better than my old normal. Like the Monarchs, in the spring I can see life coming from death, new coming from old, large coming from small, growth from nothingness. Springtime is full of those reminders that life comes from death, that large things come from small beginnings. I have a hope for a future is unending now. Spring will help me celebrate my new perspective this year.

Tuesday, March 11, 2008

Relationships

Relationships can become difficult after a cancer diagnosis. It's not something that's talked about a lot, though.

At first after a cancer diagnosis, everyone is shocked and overwhelmed. We have to deal with the very real possibility of loss. People who love us are afraid we will die and they will lose us, and we are afraid we will die and lose everyone we love. It's assumed at first that as in the song "Live Like You Are Dying" the sentiments "I loved deeper and I spoke sweeter, and I gave forgiveness I'd been denying." will rule. And they do, at first. I received so much support and love from so many people, even strangers. I know I felt very loved and cherished and grateful. I appreciated the support from so many very much.

But some things about relationships got difficult over time.

For many of us diagnosed with cancer, though we appreciate the support and love we receive, at the same time we have a need to isolate ourselves a little bit more, especially at first. We are contemplating so much loss. We sometimes feel we need to start letting go a little bit "just in case", we feel safer that way. Sometimes I felt smothered by those who were well-meaning. I didn't always want to interact as much as everyone wanted me to interact, sometimes I needed more alone time.

Sometimes it seemed everyone wanted me to be strong and positive, as they felt that would save me. But sometimes it got difficult to put on the strong and positive act 24/7 when I was around people, though I felt I had to do it to reassure them. One cancer patient said "I don't want to smile any more. I don't have the energy to be positive and strong all the time when I'm around people."

Sometimes people didn't know what to say to me. Since cancer was the topic, they told me countless stories about family members and friends they had lost to cancer...they made me feel vulnerable. Other people were afraid...if it happened to me it could happen to them. I scared them so much that they put distance between us...I made them feel vulnerable.

Some thought that in light of my diagnosis we should have more family gatherings. That was difficult. And I became very aware of all of the cameras taken out and the pictures and videos taken of me to document my life "just in case" at family events.

Some wanted to socialize more, talk more, visit more, become closer. But what I really craved after awhile were the normal "before cancer" relationships that were less intense, less needy, that didn't have new expectations. And the relationships I most wanted to focus were my relationships at home, my relationships with my husband and kids.

I also talk to those who have supported loved ones diagnosed with cancer, and they have had a tough time too. After surgery and chemo are finished, they want life to go back to the before cancer normal too, but oftentimes that doesn't happen, at least not in a timely manner. Some of the most difficult times for cancer patients emotionally are after surgery and chemo are completed, but by then those who have supported us are needing their own support. They've supported us to the point of exhaustion and need a break. They expect us to be recovered and able to contribute to the relationships in the way we used to and are disappointed sometimes when we can't. They want the old "normal" too. Then there's the stress of lost income and medical bills and altered roles in the family. Values change, priorities change, roles change, finances change, physical abilities change. So much changes.

If you ever spend time in a crowd of cancer survivors, you'll learn that some relationships don't survive a cancer diagnosis. Some relationships that were dysfunctional before cancer become even more dysfunctional after. Some marriages don't survive, some romantic relationships don't survive, some family relationships don't survive, some friendships don't survive. Sometimes the ones that do survive are often forever changed, some are damaged, some are changed for the better.

Cancer leaves nothing untouched, nothing in our lives is left unaffected.

Monday, March 3, 2008

Personal Impact

My cancer diagnosis caused my world to come crashing down almost 7 years ago. It had a profound effect on my husband and kids, their world came crashing down too. It was hard for all of us as a family. But I have seen many good things come of our experience.

When I began cancer advocacy, my kids struggled with it a bit. They wanted the word cancer out of our lives, they wanted to forget cancer. They didn't want to talk about it, they wanted to leave cancer behind. Then they would come in my room and see me working on my appendix cancer web site. I was always emailing cancer patients and always talking to cancer patients on the phone. Cancer never seemed to be over. They wanted to support me, though, so they reluctantly let cancer remain a part of our household, they let it become part of our everyday lives.

In the end, though, they, like myself, have used the experience to the good. My kids have used our cancer story as a topic for speeches they've given in school. It's been the subject of papers they've written. My daughter's senior project this year involved her writing a chapter in a book her class published. She wrote the chapter about me and how I had used my difficult circumstance to make a positive difference, it was titled "More Than a Survivor". I had a houseful of teens over tonight... they wanted to make appendix cancer awareness ribbons as part of a school Personal Impact Project. The ribbons they made will be distributed to specialists treating the disease all over the country. They spent their evening on my livingroom floor with glue guns and ribbons because they knew our story and wanted to make a difference. Notice the hundreds of amber ribbons on the newspaper.

We are very close, my kids and I, and we respect each other and can talk about anything. They tell me things I never would have told my mother as a teen. We have great talks. We make a point to spend one-on-one uninterrupted time together often, we don't take each other for granted. My husband and I treasure time we get to spend together as a couple. My husband is able to help husbands of cancer patients he meets as a surgical nurse, he knows how they feel waiting for pathology reports. We are all better people with better perspectives because of the really difficult time we had together as a family. It was a really tough experience, but wasn't all bad in the end. Good did come of it.