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.

Monday, June 16, 2008

Ask For Help

I started this blog as a way to address the emotional aspect of a cancer diagnosis. My website www.appendix-cancer.com deals with disease and treatment information about the cancer, but an equally important aspect of a cancer diagnosis that also requires attention is the impact the disease has on our minds, emotions and our souls. From my perspective, the emotional ramifications of a cancer diagnosis far out way the physical pain and discomfort associated with surgeries and chemotherapy. The medical treatment in the end is the easy part.

Cancers like appendix cancer that have poor prognosis statistics, high recurrence rates and long and intense medical treatments are especially associated with depression, post traumatic stress disorder and anxiety. Through my own cancer journey I've at times struggled with depressions, fear and anxiety. Over my 7 year history I've had a few symptoms of PTSD. It's been really hard at times. I know I've communicated with those who have never had cancer who feel that after we complete treatment and have a few normal follow-up exams we should be happier and more grateful for our lives than we were before cancer. That we should praise God and thank our lucky stars for being cancer-free, even if only for a short time, and that we should move on leaving cancer behind with a more grateful and appreciative demeanor.

But those of us who have gone through cancer know that's not how it works. It's not that simple, it's not that easy.

What has made me really think about it is nothing actually related to cancer. A man my age I've known casually for many years, about 9 years, killed himself this week. Within 24 hours of his daughter's (and my daughter's) high school graduation, less than a week from Father's Day. I talked to him just a few weeks ago. Should I have said more? Could I have started a conversation that would have led to him talking about his depression? Could something maybe have happened as a result of that conversation that would have prevented his final act? I think very many people are thinking what I am. His funeral was standing room only. So many people cared.

At first I was so angry with him. His daughter's graduation will always be associated with his suicide in her mind. Her celebrated entrance to college away from home will be marred by his absence. His wife, kids, friends and extended family will probably forever wonder if they could have said or done something to change his mind, to have prevented his suicide. I can't imagine how they felt today, Father's Day. They just buried their dad two days ago; their dad who chose not to be present, who chose to leave them, who chose not to take his daughter to college, who chose not to see his younger daughter graduate. I continue to try to wrap my mind around that. My greatest fear was that of abandoning my children. How could someone choose to forever leave their kids?

But then I thought more. About some of the really dark days I've had. About the desperation I've felt at times. About the trouble I've had at times in my cancer journey facing just one more day. I don't know what his demons were or how long he lived in darkness, but if his life was even more desperate and dark than mine felt at it's worst, maybe I can understand his being desperate for a way out.

I just wish he had been able to tell someone how desperate he was. I wish he had been able to share with someone how dark he felt his world had become. I wish he would have asked someone for help. All I can think of now was how permanent his solution was to what could have been a temporary problem. I so wish we could turn the clock back. I so wish he could have a "do over". For his kids, for his wife.....even for me. For all of us left behind who wish he would have let us help him.

I talk to cancer patients sometimes who wish the cancer would just come back and do them in so they could quit living in the limbo of fear and uncertainty. At least they'd know what they were dealing with, at least they could have the enemy in site. I understand that. I talk to people almost daily who are struggling with depression and PTSD.

I just want to say here that it's okay to seek help and support for the mental issues we all deal with, to ask for help finding light in our darkness. Seeking help in discovering our light is just as important as battling the physical implications of cancer on our bodies. It's okay to ask for help. Please ask for help on all fronts of the cancer battle. Do it for yourself. Do it for the people who love you. Please know that your heart, soul and mind deserve as much care as your body.

This is a link to a service that includes a hotline number:

Referral Information for Cancer Patients and Caregivers .

This is part of the American Psycosocial Oncology Society that is in part the work of Jimmie Holland, the woman I admire and met in San Diego who has made it her life's work to help us with the psychosocial aspects of a cancer diagnosis. Please use this service if you are struggling. It's there for those of us fighting cancer. It's there to help brighten a dark place.

Monday, June 9, 2008

Graduations

My eldest daughter graduated from high school tonight. She played in her final orchestra contests over the past few weeks, attended multiple final awards ceremonies. We will travel for her college orientation program later this week. Achievements, endings, beginnings.

Listening to Pomp and Circumstance even as a child always stirred emotions in me, tonight was no different. And in some strange round-about way I felt like I'd graduated too, but in a different sense.

Graduation ceremonies are ceremonies of successful completion, the symbol of a job well done. Graduation marks a time of moving on from the past into the future with new learned abilities and resources. The acquiring of tools that enhance independence. Completion of the old, entrance into the new. Moving on, moving away.

I find myself in a different place than many other parents of graduating seniors. I am celebrating that my daughter will begin to embark on a life of independence, a life away from her home and family as it has been until now. I celebrate that she will assume an ownership of her own life, not her life under my 100% guidance and control. Some parents I know are sad their children will be living away from them, are afraid they will no longer be needed as much as they have been until now.

But my cancer diagnosis has made my own views vastly different. The very worse part of my cancer diagnosis wasn't the fear of pain or dying, it was the terror of abandoning my children when they still needed me. I wanted so badly to live long enough for my children to abandon me as they took ownership of their own lives and became able to provide for their own needs. I wanted to live long enough to see them fly away on their own wings. I wanted to complete my job of raising them. I wanted to graduate, I guess, from my role as the mother of dependent children.

I want to always be close to my kids and have a relationships with them, but I want so much for them to be able to meet their own needs and to be able to sustain their lives independently. I want them to be able live how and wherever their lives lead them...next door or Africa, 2 blocks away or 2000 miles away. I just want them to be self-sufficient, able to provide for their needs, to have the tools to follow wherever their dreams take them. I want them to have lots of love from lots of people in their lives.

I want them to be able to live easily without me--just in case. I want to free them from needing me too much, because I know how fragile my existence is.

In maybe a strange coincidence, just before my daughter's graduation, I received an email from the friend of a cancer patient diagnosed with my same cancer. She died 4 days ago, that's why she didn't answer the email I sent her the first of this month. She was a single mom and left behind a handicapped child. She'd told me she had great faith in God and she knew God would grant her a healing miracle and that she would live to raise and take care of her son. I believe in God and I'm sure there is a reason she was not allowed to do that, but I can't understand it from my perspective here. My heart broke for her, for her son. My greatest fear came true for her. She didn't make it to graduation.

It was a great gift that both my daughter and I were able to graduate tonight.

Tuesday, June 3, 2008

Randy Pausch

This is a commencement speech given by Randy Pausch, who is dying of pancreatic cancer, to graduates of Carnegie-Mellon. I read that his cancer has now metastasized to his lungs and into his abdominal cavity. Those of us with appendiceal cancer know about abdominal cancer metastasis.

His words reflect profound wisdom. That we don't beat the grim reaper by living longer, but by living well and living fully. The reaper will eventually come for us all. We need to follow the passions we have that comes from our heart, and in the end our purpose will be about people and relationships, not money and awards.

I have always been a passionate person, and different passions have come into my life over time. I am passionate about my husband and kids, passionate about my music, about learning, passionate about words, about my work. Now my cancer experience has made me passionate about being an advocate for those diagnosed with cancer.

I have communicated with so many wonderful and courageous people diagnosed with and battling cancer. I've also communicated with many wonderful and inspiring surgeons and oncologists who treat those of us with cancer. And most recently I've met and communicated with many brilliant and passionate scientists who want to see the devastation cancer brings into lives become thing of the past. So it has been about people and relationships, even moreso since cancer. My life has been infinitely richer and more purposeful as a result of my cancer experience, though cancer made it feel like hell for a long time.

What made me cry when I saw this video, though, was Randy Pausch passionately speaking of and kissing his wife following the commencement address. He said he knew she was the one when her happiness became to him more important than his own.

My husband has had that same respect for me for two decades, he puts my happiness before his own. He supports me in whatever I am passionate about, he has made me able to do the work and devote the volunteer time to cancer advocacy that I do. It takes up a large part of my time now, and he supports me in that. He has always supported me in my passions.

Sometimes I wish my husband was more passionate about more things...but I got to thinking that maybe he sacrifices his own passions so I can realize mine. If I am any help to anyone else, it's only because my husband, has helped me and supported me in doing so. He's my hero, but in a round-about way he's yours too if I've made a difference to you. Please know that. My husband is my life's greatest gift. Something about watching this video made me truly appreciate that. I am very blessed.