Back in 2010 when I was researching treatments for appendiceal adenocarninoma, I learned that appendix cancer is often treated with colon cancer chemotherapy even though appendix cancer is thought to be genetically distinct from colon cancer. There still aren’t any appendix cancer-specific drugs but some patients do respond to the standard colon cancer drugs. To understand why, scientists are doing research into the genetic differences between the two types of cancer and have found that there are distinct genetic mutations between appendix cancer genes and colon cancer genes.
It’s November 30, my “new birthday” once again.
Seven years ago, I had surgery at MD Anderson Cancer Center to remove a second appendiceal adenocarcinoma tumor after two prior surgeries, six months of pre-surgery chemo, three more months of post-surgery chemo (just in case) and a whole bunch of support from family and friends. My doctors removed a completely dead tumor even though the odds were not in my favor.
So today I will celebrate and revel on my “new birthday” again by: Continue reading
It’s another hot August morning in Austin. I’m waking up, sitting in my favorite chair with my dog, sipping my coffee with my feet up. And my feet hurt. Six years after chemo, I still have some pain in the balls of my feet and toes, and today’s pain is more intense.
Don’t get me wrong – I’m absolutely joyous to be alive! Neuropathy is just one of those nagging, ongoing side effects that you get used to.
What is neuropathy? And why does chemo trigger it?
Certain types of chemo, like ones that include platinum-based drugs and others, tend to damage the nerve endings in the extremities, mainly hands and feet, resulting in peripheral neuropathy. Continue reading
Yesterday, November 30th 2016, was my SIXTH anniversary with NED (no evidence of disease) after my journey with Stage 4 nonmucinous appendiceal adenocarcinoma.
I will never know why I had cancer. Or why I am well and still here. Instead of searching for answers to those questions, I would rather address the real questions that matter, like these that I came across recently.
- Did I offer peace today?
- Did I bring a smile to someone’s face?
- Did I say words of healing?
- Did I let go of my anger and resentment?
- Did I forgive?
- Did I love?
I try my best to answer ‘yes’ to as many of these as I can every day but I’m only human and I always fall short! Crazy as it sounds, it’s not always easy to carry the weight of being well, of being given more time after staring down my possible death before I was ready. So how do I live my life now?
I’m trying to make choices each day to pay it forward, be present, listen and participate. One of the ways I try to to do these things is by being there for my small “tribe” of fellow appendix cancer survivors. I’m also grateful for the opportunity to help other cancer survivors by participating on the MD Anderson Patient and Family Advisory Council. As part of this group, I’m able to give my input on ways to improve patient care at MDA.
My doctors (my heroes) don’t know why I had a complete response to chemo and surgeries. There are only 50 -100 people diagnosed in the U.S. each year with my particular flavor of appendix cancer. Meaningful data is difficult to glean from such a small group. So I may never know the answers to the why and how of my cancer. For now, that’s OK with me. I’ll stick to living my life as best as I can by trying to answer the real questions.
When I started my cancer journey, I had heard of the phrase “cancer survivor” but I didn’t think the term applied to me at the time since I was going through treatment. I thought the clock started when you were cancer-free.
But I soon learned three things. First, that the term “cancer-free” is being replaced with “no evidence of disease” (NED). Second, that the survivorship clock starts when an individual is first diagnosed, not at NED. Third, that cancer survivorship continues on past treatment. I will always be a cancer survivor.
“An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”
MD Anderson refers to the different stages of cancer survivorship as living with cancer, through cancer, and beyond cancer.
A cancer survivor that is past the treatment phase and has NED, may still have lingering physical effects of treatment such as fatigue or memory issues from treatment among other things. Post-treatment emotional effects may include fear of recurrence, anxiety or a sense of gratitude to be alive. These emotions can cycle through again and again.
My long-term physical effects are neuropathy in my hands and feet (a constant feeling of numbness, tingling and pain) which requires me to be selective in my choice of shoes (flat, cushioned and with good arch support). If feet and hands are my only issue, these long-term physical effects are mild!
I cycle through some of the long-term emotional effects such as fear of recurrence on occasion but, mostly, I am extremely grateful to be here on the planet! Whether you are a cancer survivor or not, each day is a gift as we are not promised tomorrow. All the more reason to celebrate the little things in life!
Thanks to all my friends, including my care team at MD Anderson, who supported me during treatment and beyond. You will never know what a difference you have made in my life. I am so grateful for each of you!
Here is my blog post on this topic featured on MD Anderson’s Cancerwise blog:
After appendix cancer, celebrating the little things
June 14, 2016
In addition to still being alive on the planet six years after my cancer diagnosis, one of my other day-to-day blessings is getting to connect with other appendix cancer survivors.
One of the big drivers in deciding to start this blog was the opportunity to connect with other appendix cancer patients, particularly since there was so little information out there and I hadn’t met anyone with the same type of cancer.
Over the years, I’ve made many new friends and we have been blessed to share stories, experiences, treatment survival strategies, laughs, and tears.
Many thanks to Cancerwise, MD Anderson’s blog, for featuring my story in their blog this week where I discuss taking an active role in your treatment.
When I was a kid, my mom and I would go on long walks with friends every Saturday in the Sierra Nevadas near Yosemite and often go camping. Or we would take road trips together to visit old friends in a different part of California, about 8 hours away from where we lived. We enjoyed these periods of time where we could hang out and just relax.
Fast forward to today, and it’s always a treat when my mom, who lives 1800 miles away, comes into town for a visit. These mommy-daughter visits typically include nice lunches, walks around the hike-and-bike trail with the dogs, and time spent with my kids, husband, and friends.
But 2-3 times a year over the past four years, we’ve lined up our mommy-daughter “vacations” at MD Anderson for our respective cancer checkups, scheduling our CT scans back-to-back and spending a few days in Houston. We’re both blessed to be on relatively uneventful survivorship paths. Yes, we get together for fun trips as well, but the steady drumbeat of cancer checkups seems to dominate our visits. Continue reading