New Normal

It's amazing how easy it is to create a "new normal" each day as your body slowly disintegrates. All I want to do is sleep all day. Actually, I want to clean house, do laundry, put things away, do something useful, do something fun. Weakness, rashes, bleeding, fatigue, breathlessness, cough, dizziness, - every day witnesses a loss of some ability. Each of these things appear gradually so I think it is normal.  I can see the downward spiral when I remember what I was able to do just a few months ago and what I can do now. I am not in pain I am just slowly losing the ability to do things for myself. When asked how I feel, I honestly answer "fine" because within the confines of that moment, I do feel fine.

I spend a lot of time on Facebook keeping track of everyone else's lives. It's encouraging to see everyone else planning and doing things. It is just weird not to have any future plans. I got through chemo before and really thought I could do it again but my body didn't start breaking down like it is now. Perhaps there is cumulative effect. My hope is that I will get a break from the chemo after 6 months and be off of it long enough for my body to recover so some of my strength will return. The difference is that this time I know I will be going back on chemo at some time.

My surgeon told me that his sister-in-law was in the same situation as I and that she was going on her 6th year (prognosis is 2 years) and doing well. He didn't talk that way the last time we met. In fact, he tried to talk me out of having surgery because we know we would not get it all since it had already metastasized to a node in the abdomen. The only therapy appropriate for microscopic cancer cells circulating in my body is chemotherapy. The chemo, and what it does to the rest of my body poses as much, if not more, of a threat to my life or quality of life as the cancer.

I didn't think of dying as being a long downward slope. I thought it would happen fairly quickly after deciding not to do chemo anymore. I didn't realize that the chemo would weaken everything in my body putting me at risk of dying from that damage as much as the cancer.

I took so much for granted. Getting up, walking, running, lifting, working, breathing, taking a shower, getting dressed, planning a project that will take all day - all things I don't do or can't do without tremendous effort now. This is my new normal and what scares me most is how quickly it became my new normal.

In my mind I can still run and go to work and travel and exercise. In my mind I am still in denial and plan to use chemo to beat down the cancer for long periods of time. The reality is that chemo is poison and is indiscriminate in what it kills.  The study I hope to get into if we can't get all the cancer is one that is experimenting with poisons that are more tailor-made for my particular kind of cancer.

Three more chemo treatments then we do the PT scan to see if there is any cancer large enough to be detectable.  If not, I can have surgery. If so, I'll try to get into the experimental program.

My new normal is planning my life in terms of the weeks or months associated with treatment.