January update

The past month, and especially last week, have been very difficult. I feel as if there’s been a big change in my status, but I’m not certain what it means.

This month has been very pain filled for me.  Pain in my legs, pain in my shoulder and lung area, pain in my kidney bed.  The pain presented a significant challenge for me on our Hawaiian vacation. It couldn’t spoil it, but it did make me stop and rest when I would have preferred to be adventuring. Granted, when you’re stopping to rest on a tropical beach, is there really that much to complain about?

I’ve been working with the palliative care group ((Resolution Care) to manage the pain. It took a couple of trips to the ER, and futzing around with pain meds, but I feel we’re on the right track.  I’m taking morphine, which is pretty good for the pain, but leaves my head a little less clear than I’d prefer.

I’m also going to do a short round of radiation therapy next week, focusing on my hip and leg bones, where there are cancerous lesions.  I have heard that this treatment is usually very effective, so I can’t wait to get started.  I’m tattooed and ready to go.

In the past, most of my pain or discomfort has been the result of my treatments. Now it is from the cancer itself.  This is a big paradigm shift, which, along with the recent failure of treatments, leaves me shaken and uncertain of the future.   As a result, I’ve been feeling rather dark.  Morbid. And it’s been difficult to shake that cloud.  However, I keep reminding myself that I had an even more significant paradigm shift 22 months ago, and  I was able to work my way through that to a place where I could enjoy all of my days. I need to put in the work again.

Because of the pain, the medications, and not being sure of my status, abilities, limits, I’ve had to cancel two quilting related trips coming up. I’m sad and frustrated. I still want to do these things, but am not sure I can manage with out a caregiver (aka my lovely husband) along.

I’m trying to remain hopeful. Hopeful that radiation will ease the pain. Hopeful that I can still travel to Europe in a few months. Hopeful that I don’t need to start making hospice plans, even though I’m starting that process.