Thursday, December 28, 2006

Combating the Loneliness of a Rare Cancer

When I was first diagnosed with gallbladder cancer last May and began researching the disease, I was stunned by how rare it is. I mentioned the statistics in an earlier post, but depending on whether or not bile duct cancer is included, there will be something between 3,000 and 8,700 cases of gallbladder cancer in the U.S. this year. Seeing those statistics, I realized that not only did I not know anyone, ever, who had had gallbladder cancer, or who even knew of someone, sometime, who had had gallbladder cancer, but that I am unlikely to meet anyone who has the disease. It turns out that I was wrong on the first count, as I learned recently that a friend's mother died from gallbladder cancer in the 1970s. However, the second point will probably be true unless I arrange to connect with one of my long-distance friends with gallbladder cancer in the months ahead.

I feel the loneliness of the diagnosis when I go onto a cancer website, and my cancer isn't listed. Anywhere. Well, somewhere. At the "big" sites, I can find it. The American Cancer Society does have information, as does the National Cancer Institute. There is a Rare Cancer Alliance, apparently formed by a woman who wanted to provide a central source of information and connection for rare cancers, but it combines bile duct and gallbladder cancer, and lists a total of 18 posts on the discussion board over the year 2006.

How do I counteract the loneliness? One thing is by writing this blog; I have told more than one person over past months that writing here is therapeutic, that it helps me process what's happening inside my body and inside my psyche and spirit. Hearing from friends and strangers that they've read my blog, and hearing them relate their responses and their experiences is a powerful antidote to my loneliness.

Just today, I had an email from a woman whose mother was just diagnosed with gallbladder cancer. She had found my blog, and some of the information I provided, and linked to. Her mother is stage 4 and not doing well, but I was glad she could find information on my site.

Another important antidote has been to connect with others who have gallbladder cancer. I haven't personally met anyone else with GBC - yet! - but I hope to. And even if we don't meet in person, I've made contact through the discussion boards (listed on the side links of the blog) at Johns Hopkins,, and Cancer Compass. Those three discussion boards are essentially it for connection with others with the disease, or who have loved ones with the disease. In addition to the discussion boards, I've made contact by email with a few other folks with GBC - Woody (who has posted a comment on several occasions here), Melissa (who sent me an email that I wrote a post on - see November 8), and, most recently, Tia, from Hawaii.

Tia got my email address from Woody, who is compiling statistical information about those of us with GBC, and she wrote me with her story and then called me on the phone a week before Christmas. Tia is 17 months post diagnosis, and has been feeling good and doing well following surgery, radiation, and chemotherapy with 5FU. Now, she has some mets, including one under her clavicle that's been biopsied. She and her family are searching the internet for promising clinical trials or [alternative] treatments, something that might actually offer a cure. She's finding that her quest may take her outside the U.S. to a country where this cancer is not uncommon. That's Tia's story, briefly, but the exciting part for me was that we connected, about the disease, and surviving, and thriving, and having the rare cancer called gallbladder cancer. And, despite living in Hawaii, she has an oncologist at Dana Farber Cancer Institute in Boston, and we both have an appointment on Jan. 19 there. Perhaps we can meet!

On Dec. 23, the day after my gloomy post "Today, I don't want to know," Tia called me, to say that she knows how I feel. And she does. Ironically, she'd had an attack of sadness about the possibility of no more Christmases the same day I did. How affirming to have someone in my situation call to say she understands! (And I want to add that I sent her a draft of this post, so that she could edit and give the okay for the information about her life that I've provided here.)

What's most important about all of this? Connecting. I feel that all of us find healing in connection, in bringing our spirits, our souls into connection with the soul of another. In life, it can happen through a glance, a kind word, through true friendship where we are willing to be vulnerable with another, through faithfulness in relationship where we stay even when things are tough. And it can happen through the new technology, like the world wide web, and blogs, and the ability to find someone else who is struggling with issues like ours. Healing of the spirit can happen through connection, and I'm happy to have some of my loneliness alleviated by connecting with others affected by this rare cancer.


Anonymous said...

I hope you and Tia do get to meet on Jan. 19. Who would think that someone with the same rare disease and from so far away would have an appointment in Boston in the same place and on the same day as you! It must be fate.

Along with all your firends I am eagerly hoping they will be able to offer you some good hope and lots of help at Dana Farber. My best to Tia, too.

Jeanne said...

Lynne--I hadn't thought of that part of having a rare cancer: not having a friend with the same disease who understands.

I too hope that you and Tia will be able to meet on Jan. 19 (please let us know if you do). She sounds like someone who could be a great friend. Any chance you could go to Hawaii? I'm going for a week in early February for some R&R with several women friends.

My friend Jill is also living with metastatic breast cancer, and she understands what's going on with me like no one else does, even my closest friends (who are very empathetic people, but they don't have the disease I have).

Take good care, and give Tia a hug from me when you meet her. Jeanne

Anonymous said...

Lynne, thank you so much for your blog. And for all the wonderful links. I've spent the past few nights reading as much as I could. Woody is a great soul too and I have to update him on Mom, once I get some more definitive info from her doctors.

As for having something rare, I have a rare disorder myself and know exactly how you feel. Please remember I'm here for you too. You are so right that connecting and having faith and helping each other only helps the healing and strength of life. {{Hug}}

p.s. I ranted a bit on my latest post so don't feel you have to subject yourself to it ;) lol