You’re probably here because you, or someone close to you, has been diagnosed with pancreatic cancer. I was diagnosed with “ductal pancreatic adenocarcinoma arising from a high grade IPMN” in 2008. I was terrified and confused. I went to the internet right away, hoping to find something to hold on to. There wasn’t much. There were and are sites that will explain what this is and give information on treatment, sites for those affected to talk with each other, sites that lead you through the procedures involved with this, sites that give you alternative cures, sites that describe treatment, sites that talk about research.
I went to them all and didn’t find the help I was hoping for. I remember watching a man writhe in agony post Whipple on YouTube, I listened in on chat rooms, I surfed the web a lot, alternating between shock and fear. I would get up after a particularly hideous entry and walk the house, breathing too fast, my throat tight with what I called the terrors, sometimes shaking, sometimes crying. I felt like a two year old dumped off at the fun house; reality was so altered that I sometimes didn’t recognize myself. But time passed, I didn’t die (in 2013 I was told that the tumor was gone) and I thought back to how bleak it all seemed to me, how hard it had been to find real help with the emotional toll this diagnosis caused. In the 5 years between those two dates – being diagnosed in 2008 and being told I was tumor free in 2013 – I went through a lot of changes, some self-imposed, some from outside. I kept a journal during those years, writing about what I was afraid of, what I wondered about, how I made decisions, the tools I found to use, the people in and out of medicine that helped me on all the different levels of our existence – physical, emotional, mental, spiritual. Living With Pancreatic Cancer is a story of my reflections and discoveries, something that I hope will help you as you travel your own journey of illness.
The difference in my story from others is this: I didn’t have any medical treatment. I explain in other entries how I came to that decision, but basically I didn’t think I had a chance of living – everything I read or heard told me I would die soon – so I decided for as dignified and as medically-free a life as I could construct, for the time I had left. So this blog isn’t about giving you the secret of survival – because I don’t know the secret. I might have done something right or my healing might be one of those billion to one happenings that mean nothing, except to the person involved (that’s what my doctors have said – that my experience has no medical value). In a way, it’s like winning the lottery; the odds are hugely against it, but people do win. Nevertheless, during those first months I looked long and hard on the internet to find someone who had survived this without treatment. Everything said there is no remission, there is no survival without treatment. I’d like you to know, there’s at least one.
What I can really talk about with some certainty is healing on the levels that aren’t physical. In the end, the work and reflection I have done on the different levels of being have been the gift that cancer gave me. It led me to know how deep the bonds of friendship run, how much wisdom is available in books, websites, CDs, how the practice of prayer and mediation can save your sanity, how carefully you need to shelter your heart. I believe I learned enough to have had a good death, had that been my immediate path. Now I have a good life, but different from pre-diagnosis. The tools I used to get through this, the issues I have tussled with, the emotions that I have dealt with, the frustrations and elations that I have experienced, the puzzles I have pondered are the focus of the blog. I have done so much research, read so many books, been in so many groups, that it’s time for me to share what I’ve learned. Perhaps it will cut down a little on your own research, perhaps it will let you know you’re not alone with this, perhaps we can even laugh together. Over time, I’ve come to realize that this is as much a community resource and a toolbox as anything else. I hope you find something here that will make your cancer journey a little easier.
So you know where I’m coming from, I should tell you that I have one foot in the scientific world and one foot in the spiritual world. I value scientific studies and the treatments and understanding that come from them, as well as medical treatment. I also value the spiritual world, and the power of healing that comes from it. I take what each has to offer me. The bottom line for me is what works. If a sing with sand painting done in ceremony and community heals, I am all for it. If a new medicine heals, I’m all for it. I don’t have a rigid belief system about either side of this particular divide. In fact, I don’t think it is a divide but a continuum of healing. I do have a strong belief, however, that healing is a very individual thing. By that I mean I don’t think there’s the single right path to healing for every person. Each person has their own strengths and weaknesses, their own genetics and family dynamics, their own story and culture and each heals in their own way; what works for one may not work for another.
HOW TO USE THIS SITE
You will notice at the top of this page there are several categories. In First Steps, I write about what happened to me those first weeks, how I was feeling and how I dealt with what I was feeling. It features a lot of the questions I was asking myself. If you are newly diagnosed, you could start there. In Techniques, I write about the different methods I used to deal emotionally and spiritually with the diagnosis. In Diet and Environment, I write about the physical changes I made. Attitude and Facing Death deal with hard things, places to find courage, ways to do what needs doing. Healing is kind of a catch-all category; I write about my experience with the medical world, the energy world, reflections on illness and my perceptions of what healing can be. There is a Resource category where I list the sites I have found helpful, the books I have read, the CDs and DVDs I have watched and listened to. When I find something that needs to be added, I’ll put an update date in the upper right corner to let you know something new has been added. And of course, my Thanks to all the people who have helped me so much.
And just a note: this really isn’t a blog because blogs are ongoing, maybe daily thoughts. I’m using the WordPress blog platform so I can provide this site free and without advertising (thank you WordPress). I will add things occasionally, as news pops up or as a new post wants to be spoken, but the basic information and thoughts are already in place. I update frequently, so keep checking back in for updates.
How to Navigate this Blog: The nature of a blog dictates that the first article written is the last in the queue. So if you want to read from the beginning, start with the last entry in any category (at the bottom of the section may be a “older posts” phrase in gray. This will be where the earliest posts are). Especially if you are dealing with this as a new diagnosis, I’d start at the beginning (which means the last entry). That’s where my heart and soul were put, those first few years.
Navigating hints: If you ever get lost, you can put your cursor on the title of the blog “Living With Pancreatic Cancer”, click and be taken back to the home page. Also, at the top of each entry, in faded grey, are posts you’ve visited in case you want to go back or forward. At the bottom of each entry, in faded grey, is an icon for the category you are in. Just click on any of these, depending on where you want to go, for easier navigating.