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, July 26, 2008

Randy Pausch's Death

I'm sorry I have been off-line so long....I vacationed with my husband and children in Wisconsin (the Dells.....and I got stuck in "quicksand" at the bottom of the old Lake Delton and was chased by a Pit Bull on a rampage...wondered for a moment if I had survived cancer to drown in quicksand or to be mauled by a Pit Bull!). But we had a great time. Since being back I have been working a lot of hours so am behind on almost everything...including my blog.

Usually something happens in my life that motivates me to write in my blog. This time it was discovering that Randy Pausch, of the The Last Lecture, had died of pancreatic cancer. It was a shock to discover that....though as a nurse I understood the medical implications of his disease and knew he had been in hospice and would die soon. But still....

Somehow it had seemed that if the world was right and if there was justice and miracles and fairness, he would have survived his cancer. That he would be doing push ups on video again over and over, that he would be THE SURVIVOR of his cancer against all odds. It just seemed that would be right. He looked healthy on video, he had young kids, he was a good person, he made a difference, he took care of his body. He deserved to live, didn't he?

Wouldn't his survival against all odds have been the ultimate happy ending we all want to tuck in our pockets to reach for when we need something to believe in, when we need hope? Wouldn't his survival have been good reason to have faith in justice and hope and goodness? Wouldn't it have just been RIGHT for him to have survived? For him to have been the person who publicly said he had a terminal diagnosis but to have then defied the odds as an example for all others who came after him with no known hope of defeating their cancer?

But he didn't live. He did, as he said he would, succumb to his disease. His wife did become, as he told Congress she would become, his widow. His children have no father. They are so young they may not even remember interacting with him when they are adults. They will probably only know him through photos and videos.

Cancer claims its victims without regards to fairness or justice or rightness. Cancer is a thief that steals from us and leaves grief in it's wake. I know of two other mothers of young children who were good people, and who like Randy Pausch, have recently involuntarily abandoned their children.

It is wrong. It is unfair. It is an injustice.

We need as a society to band together and do something about it. We need a grass roots movement that demands support of research to end the agony and waste and hurt this disease causes all of us at one point or another.

We need the Stand Up to Cancer movement. We need to see the beginning of the end of cancer. We need to believe it can happen, that cancer can be beaten.

Randy was asked a question by a fan after appearing on a TV interview. The questions was: "If you could ask a question to your lecture audience and Web site audience 30 years from now, what would it be? -- Christian, Sydney, Australia"

He answered: "Have you found a way to bring me back? How are the cyber implants going? Dang it, have you cured cancer?"

I purchased a bunch of the SU2C buttons to give out, I became part of The Stand and donated via my cell phone (text STAND to 40202 and $5.00 will be donated to SU2C with the amount added to your cell phone bill). I'll donate in honor of all those I've met with appendix cancer (over 400) on Sept. 5th. I'm telling everyone I work with about SU2C. My daughter and I bought SU2C tote bags and t-shirts to help give visibility to the movement. I have also written many letters now to government officials asking for funding for cancer research and was recently asked to speak to someone in my senator's office. Randy Pausch has a star in the SU2C constellation. I was privileged today to be the 3rd contributor to his star.

I very much want to say one day that I played a part, however small, in ending the pain cancer causes.

I want to Stand Up To Cancer. I want to see cancer defeated.

Friday, July 11, 2008

Being alive

Lately I've been kind of in a different phase of my life. I've lived in the cancer community for 7 years. It's a brutal and honest and painful and even sometimes joyous place. It's not a place for the weak hearted. You need to be strong to survive here. You need to be honest, you need to be sincere. You need to totally revamp your priorities and views. Your life gets a real makeover in every sense when you live with a cancer diagnosis.

I lived for a long time, I think, a bit afraid of living. I knew after cancer how fragile I was. I knew how rapidly things could change, how rapidly I could lose everything and everyone I valued. I learned not to hold onto anything too tightly. To not make future commitments. To be always ready to let go of everything and everyone in a moment's notice. I felt I was walking on thin ice for a long time.

Lately I've communicated with many who are losing their cancer battles. Mothers who will abandon young children, who will realize what was my greatest fear. I almost feel guilty that I've lived long enough that my children will, as they are supposed to, abandon me to pursue their own lives. I've almost lived to my goal, to realize my children's 18th birthdays. The life expectancy I'd hoped for...to live to be 49. I'm 48 and 1/2. In 6 months I'll have made it. I'll have acheived what I designated to be my life-expectancy goal after cancer.

So now, I contemplate living more freely. I don't have anymore the great responsibility I felt before to stay alive. My upcoming years, however many they are, are my bonus years. I feel like I can relax now. I can enjoy and spend time doing what I value most...making my survival count. I can pursue music, words, intimacy, nature and beauty...things I treasure. I no longer have a great need to measure my days or my future. I am not afraid to die; I don't have the same desperation to stay alive as I had when I was diagnosed and my kids were 10 and 11. I can make future plans, but they can be open to change and that's okay. In seven years I've also developed a great trust in my God, I trust in his will in all outcomes and all eventualities, even the ones I don't know and can't understand from my perspective here. When I die I will only change location..and go to the place where I truly belong. Nothing to fear, something to look forward to. It's all okay. I am blessed, I am very much at peace now. I am one of the lucky ones.

My heart still breaks, though, for those who have left or will leave young children behind. But I wonder sometimes if that might be part of a master plan we can't know from here but will understand when we get home and can see the big picture. Maybe one of the children who lost a parent will be motivated to do something that leads to a cure for cancer. Or maybe they will have the experience needed to console another who will then be able to find the cure for cancer.

I think sometimes of Abraham Lincoln. He was born in relative poverty to uneducated parents. He lost his mother at a young age also, when he was 10 years old. His only two siblings died; his brother in infancy, his sister in childbirth shortly after she married. He lost three of his own four children before they reached adulthood. He was not close to his father and did not attend his father's funeral when he died. It's hard to imagine losing a mother as a child, or losing a sibling, or losing your own children...losing several of your children would be unimaginable. His lifetime losses were overwhelming. But I wonder if some of those experiences in his life molded him, made him become the man who in the end changed a country forever for the better, a man who ended suffering for many, who freed a generation from slavery, who made a mark on the world that will last forever.

I look forward to someday knowing what we can't know from our perspective here. I look forward to someday having a view of the big picture, of the finished side and not the underside of the tapestry of life. I don't know the answers now, but someday I will. I will so love that moment, when everything makes sense. When I can understand the purpose behind pain I see now.

Monday, July 7, 2008

Priorities

I met a woman who used to be my neighbor in the grocery store yesterday. We knew each other fairly well, talked fairly often. We borrowed eggs and cups of sugar from each other when she lived across the street as we raised our kids, but we haven't communicated since she moved into a new house a year ago. She'd lost a lot of weight. I mentioned that she looked thinner when I saw her, I asked how much weight she had lost. I guess I thought she'd tell me she'd been to Weight Watchers or was on Atkins or the South Beach diet.

She said she had lost 40 lbs., but not intentionally. She'd been sick for the past year. Only in her 40s, like me, she went to the emergency room after being treated for unresolving bronchitis only to be admitted to ICU in heart failure. They aren't sure why she went into heart failure or why her heart was so enlarged or why her heart rhythm to this day is disturbed, but her heart is in trouble. She takes lots of medications for congestive heart failure now. She no longer takes her life here for granted. She lost her old "normal" too. She said they'd lived in their new house for a year now, but they still hadn't painted any of the rooms. And she didn't care that they weren't painted. It didn't matter. It was insignificant. Painting walls no longer qualified as a priority.

I've recently been thinking. I used to rent a professional steam cleaner and steam clean my carpet once or twice a year. I haven't in years now, it doesn't matter. I just vacuum. I used to have a great personal filing system. Don't anymore, doesn't matter. I used to be into spring cleaning every year. Not anymore, doesn't matter. I used to take more pictures, I don't much anymore. Can't take them with me-- only what is in my head and heart stays, so it doesn't matter. I used to crochet afghans while I watched TV, don't anymore as most TV now seems a colossal waste of time. Lots of things now don't make the "important" cut in my life. Only what matters matters.

But sometimes life was simpler and easier when unimportant stuff was okay to contemplate.

I find myself sometimes missing the days when frivolous things made the cut. The old normal. When life and priorities were simpler. When I didn't think so hard about everything. When my house was cleaned and more organized. When I could crochet in front of a TV program and not feel guilty about wasting precious time.

Life was in many ways easier before cancer, when I was more naive. Something about surviving cancer makes you live your life much more responsibly. You have a great need to make your time count after cancer.

Wednesday, July 2, 2008

I am part of the Constellation!

Very cool thing, my daughter bought a star in my honor on the Stand Up For Cancer (SU2C) Constellation! I really wanted to be part of the constellation, but thought it would be wrong to buy a star for myself since stars are "in honor of" someone. I did start a Facebook page so I can be part of SU2C Stand, though.

I've donated money to Stand up for Cancer. I hope to donate more. I would love to honor every appendix cancer patient I've communicated with by buying him or her a star, but since I am a health care professional I am afraid of violating HIPPA regulations by identifying appendix cancer patients publicly in the constellation with out their permission. But I still hope to donate in honor of the people I know fighting this disease.

I am so excited about the potential Stand Up To Cancer has to make a difference. All of the money raised will go to fund research. Research has the potential to make cancer a disease like polio or small pox, the plague of a past generation. I so want people to only remember the past devastation of cancer, not to experience it in their own lives or the lives of those they love.

I want so much to see the end of cancer. This video from SU2C states much of what I've learned and have come to believe.....we can be a part of the generation that sees an end to cancer. Just like the 1960s had their grass roots movements, we can be the part of our own generation's grass roots movement. We can all be a part of the beginning of the end of cancer. We can make ourselves count in a way that matters and that will always be remembered. We can be a part of something really great.

I want to see a huge movement rally around Stand Up To Cancer. I want us all to know that we've made a difference that will outlive us for decades, for generations. I truly believe the stars ARE aligned. I truly believe cancer CAN be conquered. I believe that each one of us are part of the key. I believe we do stand on the precipice of greatness in conquering cancer. I do believe there IS a "perfect storm' brewing. I have met some of the people behind this movement. I know they are passionate about seeing cancer defeated, they want that to be their life's legacy.

More information about SU2C can be found on this link: Learn About SU2C

Please watch the video and believe with me. Please join the movement in any way you can. I believe with all my heart that we can make a difference. We can be part of the end of cancer.