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 10, 2010

After Cancer

I'm sorry I'm blogging less here. I am writing less in general. I have always written a lot in a multitude of forms...journals, poems, essays, more recently blogs. I've written a lot since about the age of 13. So this is unusual for me. I'm at a sort of strange crossroad. Cancer and survivorship have defined me and much of my writing since my diagnosis in 2001. A cancer diagnosis overwhelms your life, as does treatment, as does survivorship. It's ongoing and life-altering for many years. All we want after our diagnosis is to return to our "before cancer normal". Something we really can't do. We have to create a new normal after cancer. We are never who we were, our lives are never what they were before diagnosis.

I think a part of me is rebelling. I want to try to do life without thinking about cancer...at least a little bit. I read a book once about a physician cancer researcher who was diagnosed with a uniformly fatal cancer. He over-dosed himself on the standard chemotherapy for his cancer and almost died from the effect (he could do that, he was a physician). When he had survived past his life expectency, he gave up his cancer research and his medical career and went to live somewhere on a remote island. He couldn't live in the cancer world anymore, he didn't want anything to do with medicine. He ran away. I don't know if his physically running away helped him to mentally leave his cancer diagnosis (I'm guesing not). But he wanted to try to find a new cancer-free "normal".

I won't ever go that far ever. I truly believe I am meant to stay in the cancer community. I still answer many emails from newly diagnosed appendix cancer patients, and I love being able to do that. In less than 30 days, I will begin graduate nursing education in oncology. Next month I will probably go to Maryland to meet one of the leading appendix cancer specialists and to participate in "Heat it to Beat It".

I feel that I was given the gift of surviving my terminal diagnosis so that I could help others navigating the rare cancer medical maze. I truly feel I survived for that purpose. Is it a coincidence that I was diagnosed with the most aggressive form of appendiceal cancer at Stage 4, happened to be a medical professional who had spent years teaching lay people about their diseases and who before diagnosis happended to be fascinated by rare disease...I don't think so. I believe in Divine appointments, and I think my diagnosis and experience (and survival) was given to me so I could help others diagnosed with this rare cancer. It's my life purpose.

But just for a little bit, I've let myself feel safe from cancer, from the uncertainty, from cancer testing. I'm living a life not focused on the vulnerability cancer makes us feel. My husband and kids and I just did our annual "family vacation". Just the four of us, out of town and spoiling ourselves for a bit. Spending time together as a family; mom, dad and kids.
I don't know how many more years we will be able to do that...in a few years my kids will probably have their own families to vacation with...but I hope they continue the tradition with their own families we've had for many years. So I'm enjoying it!!

3 comments:

Alice said...

Carolyn,
I completely understand. There comes a time to step back from cancer for our own sanity, much as we have to share with others with our rare diagnosis. Posting here should be something you want to do, not something you feel obligated to do.

I, too, have times when I don't want to check the cancer boards, where I want to put that part of my life aside.

I'm thrilled that you are moving forward in your nursing degree.

We'll be here, checking in periodically. You write beautifully, but it can't be forced.

All good wishes as always,
Alice

Anonymous said...

Hi Carolyn:

Thank you so much for keeping up this site and understanding this experience. If you recall I texted you a few months ago when I was initially dx. I underwent a couple of surgeries, one emergent, and plan to get HIPEC with Dr. Bartlett at UPMC in January. Do you know any of his patients that you could put me incontact with? I would be interested in hearing their experience.

Thank you, Kelly

Carolyn Langlie-Lesnik RN BSN said...

Hi Kelly,

Thank you for your kind words and support! I'm sorry you are having to deal with this cancer and wish you the best. Dr. Bartlett is one of the leading specialists, so you are in good hands. I know I've communicated with several of his patients in the past, but not currently. I'll do some research and try to hook you up with someone! Email me so I have your email address!


Take care and I wish you a succcessful surgery and quick recovery!
Carolyn