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, December 29, 2008

New perspectives

A cancer survivor friend was telling me today about the many stresses currently overwhelming her. They are very significant stressors. But then she said how great it was to be freaking about something other than potentially dying of cancer. I laughed. I've felt the same before...grateful for things that overwhelmed me that weren't cancer. Stress after a cancer diagnosis was redefined, even sometimes enjoyed. What had once been stressors to be avoided had become greatly appreciated distractions.

Another newly diagnosed cancer patient told me this week how much she appreciates sleeping. She reminded me that sleep was my escape from cancer too, early on...even though falling asleep was difficult. I remember first waking up in the days after I was diagnosed and feeling great....for about 60 seconds. Then I'd remember that something was wrong, my life had changed. I'd remember that I had cancer. I just wanting my normal mornings back. To wake up without the dark curtain falling.

I also celebrated this year that at my family's annual holiday gathering on Christmas Eve only ONE person took my picture!!! The first family Christmas get together after my diagnosis I noticed everyone pointing cameras and camcorders in my direction, I was very conscious of it. Everyone kept saying they were sure I was going to beat it, but they kept taking pictures and more pictures of me...just in case.

I now have a kind of annoying need to always be productive...it's harder for me to just do mindless things, I always have a todo list. I feel badly if I don't make good use of a day. I need my time to be spent in meaningful ways, I guess? I don't relax as easily. I have a timer now to monitor my on-line use, I don't want to spend too much time on the computer. Too easy to waste time you may not get back.

I'm also just less fearful in general. Old fears turned out to not have much substance in comparison to the cancer monster. I no longer have any fear of flying at all, bumpy flights and storms are fine. I even recently flew in a very old rickety small prop plane. Loud and interesting but not scary. I don't mind being in small boats in large ocean waves. I don't worry about bears when backpacking in bear country. I don't worry about contaminated water. I totally disregard expiration dates on food.

But while I'm less fearful for myself, I am more fearful for my kids, I think. I'm probably more protective, which is tricky now that they are approaching adulthood and I need to respect their independence. I know personally that bad things can happen, that good and loving and deserving people aren't immune, and that in an instant things can change. I know that we are all vulnerable. So I try harder to keep my kids safe and healthy. I put vitamin D supplements in their Christmas stockings this year after what I learned at my most recent cancer conference (more on that later).

Before cancer I also used to say I'd want to know ahead of time before I died...I think I'd wanted to organize my stuff and clean up my messes before I checked out, to not embarrass myself for posterity? Or maybe it was the control freak in me that didn't want to be taken by surprise. Now I'd much more appreciate dying quickly without having to contemplate my demise ahead of time...a heart attack or a plane crash would be preferable, probably why I no longer have a fear of flying!

Life after a cancer diagnosis just changes things. Our perspectives are different, we are changed.

Tuesday, December 16, 2008

Making up for lost time!

I want to share what I read on another woman's cancer blog today....I loved this! This is an excerpt from Jill Cohen's Dancing With Cancer. Jill has been dealing with metastatic breast cancer for 10 years.

Cancer is the only disease I can think of where people say that those of us who've got it must have a positive attitude. Well, there's very little about cancer to be positive about! Having cancer is terrible. No one would choose to have cancer. And those of us who have cancer need to be able to express ourselves. If we feel good, that's fine. But if we feel ill, or the treatments are rough on us, or we're depressed, or we're angry, or you name it -- we need to be able to express those feelings.

When I was diagnosed, so many people thought I needed to "think positive" or "have a positive attitude" to survive. I was certainly in fight mode, but I was not always positive. Many times I felt, though, that I had to put on the expected positive face when I talked to friends and family. They were so sure that my positive attitude was going to save me.

Kind of interesting- some are sure a positive attitude will save us, others feel our tumors are a result of repressed emotions and feeling. Yikes..it's a no win situation!!!

I don't believe either is true.

In the end I think honesty is best. There is no science that indicates a positive attitude is associated with better outcomes. This long term study of cancer patients was published in the journal Cancer in October of 2007:

Emotional well-being doesn't affect cancer outcome

Many of us with cancer sometimes feel depressed, sad, angry and desperate...and under the circumstances those are normal and justified feelings. The person who was the greatest help to me was my best friend...I could call her sobbing about how my life was in a bad place and tell her I was afraid and sad...she understood. She even agreed with me, she'd feel the same if it were her. She never once thought or said I needed to have a positive attitude to beat my cancer.

This was also helpful to me, an excerpt from the chapter "The Tyranny of Positive Thinking" from Jimmie Holland's book "The Human Side of Cancer":

It's dangerous to generalize about attitudes and their impact on cancer without more information. The present-day tyranny of positive thinking sometimes victimizes people. If thinking positively works for you, well and good. If it doesn't, use the coping style that's natural to you and has worked in the past. (I discuss different modes of coping in Chapter 6.) Trying to get you to "put on a happy face," to pretend you are feeling confident when in fact you are feeling tremendously fearful and upset, can have a downside. By feigning confidence and ease about your illness and its treatment, you may cut off help and support from others. You may also be hiding anxious and depressed feelings that could be alleviated if you told your doctor how you really feel. Also, this tyranny of positive thinking can inhibit you from getting the help you may need out of fear of disappointing your loved ones or admitting to a personality some people think is fatal. If you are surrounded by "the positive attitude police'" ask your doctor, clergy, or therapist to call them off, letting them know that this is an important time for you to be honest about your feelings so that you can get all the help you need. (Or give your or friends this chapter to read.)....

It is ironic that many negative, pessimistic people survive cancer, while others who believe positive attitudes will cure it do not. While members of the former group are stunned by their survival, those in the latter group are made to feel guilty or ashamed that they were not "up to" beating an aggressive disease. This is unfair. I do not believe for an instant that people whose cancer progresses have a weaker spirit or character than anyone else.


I think the people I cherish and respect most in my own life are the people who are honest about their lives and their feelings, who are genuine, who seek help when they need to, who don't feel they always have to paint a rosy picture of their lives. We all have down times in our lives and need help and support. We need to be able and unafraid in expressing how we feel and to be able to seek help and comfort.

Sunday, December 14, 2008

Connections

I'm sorry I've not posted recently. Life gets busy and sometimes it seems there are too many priorities. I've been working lots, plus getting ready for the holidays. My todo list has grown...I need to better organize my time! I believe I read that you should post to your blog about 3 times a week....in that sense I am very delinquent.

I follow several other blogs now....blogs of cancer patients. I get worried when they don't post for a long while. It's strange, I feel like I know some of the other bloggers as they share so much on-line....so when I know they have cancer and haven't posted in months, I get worried. I feel a loss when a blog just ends without a goodbye, without an ending. Some who blog know they are terminally ill, and I appreciate it when they've shared access to their blog so that we can know when they've passed. I should probably share my blog password with my best friend in case of emergency!

The on-line cancer world is a different kind of cancer limbo sometimes. Cancer blog limbo. Electronic relationship limbo. Internet forum limbo.

I've been thinking lately. I've communicated electronically with about 500 appendiceal cancer patients since publishing my web site. I have been able to meet two patients I've met electronically in person, and it was so great to do that. I met one recently in Washington DC. We had breakfast together and talked for hours. Appendiceal cancer patients kind of feel like family to me now, we share a lot. I also love the cancer survivors I've been able to meet at conferences via the Scientist-Survivor program. We share a history, and just like history binds family members, it binds cancer patients. We connect.

In the world of email and Facebook and cell phones and text messaging, we communicate a lot more now, I think, but I wonder about the quality of our wireless communication. Now what I've really come to treasure is realtime personal connections, complete with body language and facial expressions. Sometimes for me electronic communication is like seeing a photo of an oak tree vs. feeling the roughness of its bark, touching the tree’s leathery leaves, smelling the woody smell and hearing the wind rustle through it's branches. The picture isn't the tree. I much prefer connecting like I did yesterday with a new friend over breakfast, we shared a couple of hours of great conversation about things that matter, complete with body language and facial expressions and "vibes".

In a strange kind of coincidence, a columnist for our local paper recently published a book, I think his first book, "Connections". I like the columnist and regularly read his column (and blog). I met him when he came to our soup kitchen last year twice. The premise of his book as stated on the book’s web site is: "This primal need – which is not only timely, but timeless – is our original wireless connection, with face to face value and eye to eye contact. No need for Blackberry batteries, a strong cell phone signal, or a laptop computer."

When I read that on his book's website, the premise “connected” with me, so I ordered the book. I've recently come to truly value that "original wireless connection", so the book was timely in my world as I'm truly feeling the limitations of "electronic" connections lately. I've wondered if it was just me or if others feel the same in this new world of wireless communication? I'm looking forward to reading the book.

I took some time to really look at the book's website after I ordered the book. Guess what, I'm in the book. On the web site, the link to the book excerpt is about me... me who feels sometimes disconnected lately in this electronic age. I hadn’t known that when I ordered the book. Kind of ironic.

Another kind of irony I’ve witnessed in the cancer community is that very few of us want to join support groups, but all of us love to communicate with each other. Sometimes those who love us but who have never had cancer in some ways can’t understand us. We find we cherish connecting with others in our family of cancer survivors.

Lately I've been thinking about planning a real time get-together for appendiceal cancer patients I've communicated electronically who live in my general area, about a 100 mile radius. There are 4 or 5 of us. I also want to start a real time empowerment group, not a “support group” for cancer patients at my large local oncology practice. Realtime empowering connections for cancer patients.

I think electronic communication serves a purpose, but we cancer survivors need to connect in a real sense sometimes.