Thursday, May 27, 2010

the next step

All on the same day, I received emails from 3 distant friends. “Why haven’t you updated your cancer blog? You leave us hanging in a not very good space!”

When you are on a plateau, with each day similar to the last, and no improvements, it is easy to forget obligations like a blog. I owe you all better.

The purpose of the cancer blog was to report my experience from the inside, But as time went on and I found the cancer easy to live with – even when I was deep in chemo and radiation, it became a cause: to defuse the fright people face when diagnosed with this dreaded disease.

Now we face a different challenge: my easy cancer has turned out to be tenacious and has resisted treatment. It is still with me. I am not willing to move on to harsher chemos, and so I have opted to sign up for hospice.

Not the end of life hospice, but an intermediate step, palliative care. I can always opt out of this stage of hospice and return to serious chemo. It is reassuring to think I can, but I don’t think I will. My body longs for a rest.

I will have a visiting nurse and social worker, who will offer us their support. We are not making this journey alone.

Meanwhile, we are looking into two problems that might be corrected; I have not spoken like a normal person since March, it’s a raspy, squeaky voice, very pianissimo. There may be some damage to the larynx. And to my esophagus, which feels like it has closed. Only the most finely cut foods will slip down it without pain. The result is that I am eating less and less and have lost a lot of weight.

I think of myself as a reporter, embedded with the team, as I make this final journey. 140