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.

Tuesday, August 28, 2007

Dedicated to Lynne Dahlborg

I can't remember how it happened, but tonight I accidentally clicked back to a previous post of mine, the "Control" post. I don't reread what I post here. That post was over 6 months old. Control (or loss of control) was one of my biggest cancer hurdles...and so I reread my post. I noticed that post had recieved comments, so I reread the comments.

I truly appreciate comments, and one of the comments was written by another woman with a rare cancer, gall bladder cancer, who also had a blog. This was her comment to my post.

Carolyn - I do not have cancer of the appendix, although I know of two people who do, so I had known that it's a rare cancer. I also have a rare cancer, gallbladder cancer, and I found your website through Sean's Sharing our Days site. I like how he links blogs to different illnesses, and expands our network of connection. I do face the questions about control and having a terminal diagnosis, and how to live my life that's left. I am 8 months post diagnosis, had a period of being asymptomatic, and now have a recurence in my abdomen where my gallbladder was. As a result, I've started chemo, and entered the world of worrying about side effects. These questions are so big, and living life one day at a time really is a hard thing. I, too, have a blog, and I'm always hoping that other folks who have my rare cancer will find it. My site is Life Changing Cancer at
www.dahlborg.blogspot.com. I appreciate what you are doing in telling your story and providing resources and links for others with your diagnosis.

I decided to check Lynne's blog tonight to see how she was doing, I hadn't read it in awhile.

Lynne Dahlborg died July 15th of this year.

We connected only for a moment but shared a lot. I cried when I read the last entries to her blog. Then I read her obiturary, and it was probably the best obituary I've ever read. It was truly a tribute to the person she was, it was a celebration of her life. She was a person I would have liked to have known. Here is an exerpt from her obitary:

"On her 59th birthday last year, Lynne Dahlborg went tubing with her children down the rocky course of the Virgin River near Utah's Zion National Park. Doctors had told her a few weeks earlier that she had a rare terminal cancer and removed her gallbladder.

Writing about that river ride in a blog, Ms. Dahlborg said she found herself exhausted and terrified, with no exit. Her daughter loved the three-hour adventure, but Ms. Dahlborg was in agony until she stopped fighting the flow, she wrote.

"Like life, the river kept going, and my surrender was part of living and healing and knowing that I could survive even the sharpest rocks and deepest drops," Ms. Dahlborg wrote, using the river as a metaphor for her cancer and strong faith that God would heal her spirit.

Her complete obituary is at:

http://www.boston.com/news/globe/obituaries/articles/2007/07/20/lynne_dahlborg_professor_at_suffolk_university_at_60/?page=full

Lynne, I'm glad the sharp rocks and deep drops are behind you now. And I look forward to when I will get to really meet you.

Thursday, August 23, 2007

Our Community

I'm feeling very grateful tonight. Grateful that I am part of the cancer community. I am grateful for those of you I've met and corresponded with and talked to on the phone. Those I've met in person in my community. Just since publishing my web site I've communicated with over 220 appendiceal cancer patients. I now know several more diagnosed with other cancers in my community.

But today was an especially great day in that sense. It just happened today that I interacted with a lot of people affected by cancer.

At first, just after I was diagnosed, I was uncomfortable around others battling cancer. It made me feel vulnerable. I wanted to be back in the "before cancer" world, the "normal" world.

But us cancer survivors (all of us alive with a cancer diagnosis or history, even the day after) share some very profound differences from the rest of those around us who haven't battled cancer. A woman who has never battled cancer commented today that the best defense was a positive attitude. Us cancer survivors who were there knew better.....you can't be positive all of the time after diagnosis. Sometimes we've had to put on a positive front as those around us were sure we'd die if we didn't stay positive, so we pretended to be positive to make them feel better when we struggled. All of us who've dealt with cancer up front and personal have had negative moments, we all admit to times of downright depression. And that's okay, that's normal. Please read:

"The Tyranny of Positive Thinking"

from the book "The Human Side of Cancer: Living with Hope, Coping with Uncertainty", it helped me a lot.

Those of us who have battled cancer also live our lives one day at a time. Most of us who have some time in the battle no longer fear death, so comments from the rest of the world like "I know you'll have many more years" are really not very meaningful to us. We no longer care about the quantity of our time, we are all about quality and meaning and purpose. My dentist today said I may need dentures in another 15 years. His employee, the cancer survivor, and I looked at each other and smiled when he said that, we both acknowledged his difference in perspective. In some ways, he seemed from another planet. Fifteen years to us has no relevance, we don't even contemplate a decade from now. She and I just want to raise our kids to adulthood, teeth or no teeth. I've almost been alive long enough to see my kids become adults, anything more than that is bonus time. Her kids are younger, she wants to live at least long enough that her kids remember her. We don't think to even ask for old age or retirement post cancer.

And as we acknowledged our perspectives wordlessly when we looked at each other, I felt so understood.

I was so grateful for a day of being around cancer survivors, grateful that I was part of the cancer community. I was grateful for my new perspectives.

In many ways, cancer is a gift.

Saturday, August 11, 2007

Insuring Memories

My husband and I went to see a movie tonight, No Reservations. It was a fun romantic comedy. The heroine's sister had died and she had taken on raising her niece as the child had no other family. The heroine was trying to take on the role of a single parent never having had children of her own. It was a cute movie. I kind of felt sorry for the surviving sister suddenly having to change her lifestyle to accommodate raising her niece.

At one point in the movie the child was missing. After a frantic search they finally found her at her mother's grave. She was crying and said" I'm afraid I'll forget her".

I lost it at that point and suddenly started crying. I remember that fear. That my kids would grow up without me and not remember times we had shared or how much I had loved them. I don't remember a whole lot about my own grade school years, just bullet points and generalizations about the climate in my childhood home. I have scattered mental photographs of my childhood in my head, just bits and pieces.

If I had died shortly after I was diagnosed, as was expected, I don't know how well my kids would have remembered me. What would their bullet points have been? What mental photographs would they have saved?

I talk to many women now diagnosed with cancer who have that same fear. Some have children who are still toddlers...they worry that they will not live long enough that their children will remember them at all. It's a heart-wrenching fear.

Since cancer I know I've made a point of spending a lot of one-on-one time with my kids. I spend a lot of mom-and-me time with the two of them together, and also make a point of spending individual time with each of them frequently. Before I was more the field trip mom and the mom who was around being the hostess when their fiends were over.

Now we have lunch together a lot, we go out for coffee frequently, we go for walks at the county park, we go shopping together. Just this week I've gone out to lunch twice with my eldest daughter, she and I have also gone to walk and talk at the local county park and have gone to a book store together. I spent three days of "mom and me" time at a hotel with my youngest daughter this week-- we took pictures and are making a scrapbook of our special trip.

I want my kids to have lots of memories of me and of our family and the time we've all spent together. I want them to always know that they are important to me and that I love them and love to be with them. I want to really know them and I want them to really know me. I don't ever want my children to forget me or how much I love and cherish them. I want us all to be saturated with memories of good times spent together. I want them to have good memories of their childhood home.

We've become very close over the past several years and I am so thankful for that.

My kids and my husband are the reason I fought so hard to stay alive. They are why I am still here.

Saturday, August 4, 2007

My Kids

Back to the cancer diagnosis and it's effects on my kids......

The cancer diagnosis and my treatment had many effects on our family. There were many difficult times...my kids hated when I was hundreds of miles away for surgery, but I wrote them and called them every day. They had to face at too early an age insecurities I never had to face as a child.

When I was a kid I was like most kids, my mom was the rock of my life, I never doubted for a second that my mom wouldn't always be there. My kids did have to contemplate losing their mom at a very young age. It was tough, they were old enough to understand what was happening and how uncertain my future was. They did contemplate their mom dying and leaving them.

My youngest daughter had nightmares. She crawled into my bed in the middle of the night several times sobbing "Mom, I just dreamed you died". I was glad she was able to talk to me about it, but it was so difficult trying to counsel her when I myself didn't know how long I would live. I couldn't promise her I wouldn't die, because I didn't know. I didn't want to lie and promise her I would live forever, though I so wanted to reassure her.

My kids and I have had a lot of heart-to-heart talks over the past several years. We've talked about things most parents probably never talk to their kids about.

My kids were also able to talk to my husband's mother, their grandmother. Their grandmother became their counselor and their confidant, I can never thank her enough for the emotional support she provided my kids. She was their rock when I couldn't be. I will forever be grateful to her for that. My sister-in-law and brother-in-law had them over for weekends when I left town for check-ups, they kept them busy and made them feel special when I couldn't. Teachers pulled them aside at school to talk to them and make sure they were alright. I received a lot of support from so many people, but the support I am most grateful for are the people who supported my kids.

In the end, the effects have only been positive. My husband and daughters and I don't take the time we spend together for granted. As a family we've developed a much greater faith and dependence on God. We talk more, we share more, we appreciate each other more. We make sure to spend one-on-one quality time with each other whenever we can. We are very close, my kids talk to me about everything-- things I know I never shared with my parents growing up. We all realize how short our time is on this earth and want to make a difference in this world while we are still here. And we all know death can only separate us from those we love for a short time.

I'll be gone for three days beginning Monday. One of my daughters, who is 16 now, previously said that right before she got married she wanted she and I to spend time together in a fancy hotel with a spa. About 8 months ago she rethought that idea...why wait? She got a job and I worked some overtime so we could have the money to do it now instead. We leave Monday :-).