[dlaxague]

Romo, thank you for posting that lovely poem. I was one worried ball of anxiety after diagnosis, obsessing over prognostic details, as many of us have done. Trying to reassure myself by hearing other's stories of survival didn't really help. What did help was turning my focus to living fully right now and letting go my illusions and desires about control. Your poem says that well.

Faith, I had written the post below several days ago but couldn't get the formatting right in the quote at the end. Romo reminds me to send it, so I'll spend a few more minutes retyping so the listbot will let it thru.

Dear Faith,

To answer the questions that you asked - yes I know of women with many positive nodes (more than you) who are long term survivors with no recurrence.

In addition to Herceptin and Tykerb there are many chemos that can be used when needed for ERPR- cancers. And ERPR- cancer tends to respond better to them than does ERPR+ cancer so that is a good thing.

There's another question that you didn't ask, but it was in there and we all have struggled with its answer. How to live our lives while dealing with the fear and uncertainty that our diagnosis has brought to us?

To me, that's the MOST important question. The answer's probably a little different for each one of us, and if this starts a discussion you'll see the wonderfully wide range of approaches and perspectives.

The answer is not (as most of us have found out thru direct experience, smile) looking for prognostic and survival information that can tell us what will happen to us. I can remember doing that, so desperately - I think because it gave me an illusion of control - that lovely control that I didn't want to realize I didn't have (and had never had, hah!).

I think eventually most of us sort ourselves out into one of two basic ways of living. Either we make it through treatment, suppress the fear, and leave cancer behind - that works for some but probably those women are not on this list. The other strategy is to accept the uncertainty. As much as we wish we had control, at least enough to control to know what will happen - we do not. Wishing and hoping and obsessing will not give us control of what is to happen. So we try to accept the uncertainty and use it to motivate us to live our lives fully, right now - which is the only time that we have.

I'd heard that cliche about "living in the moment" so many times, before cancer diagnosis. I thought that I knew what it meant. But not until trying to figure out how to proceed after diagnosis and treatment did I really understand, on a heart level, what it meant. For me, it means not allowing fear about the future to cast even the smallest cloud over my time right now. What worked best for me in achieving this was the reasoning that if I was going to have less time here than I'd always assumed, I was not going to allow fear to cause me to waste a single moment of the time I do have. I like this quote from MaryAnn T. Romano, who says it much better than I can:

Just as disease was present before your awareness, so illness can persist beyond physical recovery from cancer. When you learn that you have a serious disease, you want it fixed. You seek treatment for cure...to rid your body of the disease. You also wnat something more...something not only impossible, but detrimental to healing. You want everything to go back the way it was before illness. You imagine that the way to wholeness is backward, rather than the forward journey you must make.

Serious illness takes you to life's horizon. Yet, here at the edge is the first step of the beginning of the healing journey. It opens all other healing pathways with the gift of present moment living, that is, the awareness that the now is, in reality, the only reality. You have a choice here as well. Use this moment in wishes or regrets for a time past before cancer...or with dread and fear for your future. In either case, you will poison the present and miss your opportunity to live this one moment to its fullest. Individuals who are healed have accepted the "precious present" as the only real reality. They live in it and rejoice in it. They are the happiest, most healed persons you will ever know."
Mary Ann T. Romano, PhD