First on my agenda in writing this blog is to let you know how much I appreciate all the love and comments I received after writing about joining hospice on June 29th. I read every comment and felt your love and appreciation. Thank you to every one of you that took the time to comment, either on the blog, or by messaging me privately. You are again the wind beneath my wings.

The hardest part of being in hospice is very similar to all the years of dealing with cancer – the not knowing. I wish I knew how long this was going to take. And how will I feel as my body continues to decline?

I have a hospice nurse who visits every week, and a hospice social worker who has visited once and now calls me every few weeks on the phone. A hospice doctor visited about a month ago when I finally experienced pain that kept me awake at night. The goal of hospice is to keep me comfortable, so when pain occurs, they don’t ask what is causing it. Their only job is to eliminate it. Most of my life, pain has been an indication that something is wrong and needs to be fixed. Once in hospice, the goal of fixing anything has been excluded. They are experts at controlling pain with medication.

We tried morphine, Tylenol, and Aleve without success. Morphine did great for four hours, and the pain would wake me up again. The loopy side effects of morphine were strong enough that caregivers didn’t want me to be home alone. They were afraid I would fall going down my stairs. I wasn’t ready to give up my independence. We tried methadone which takes longer to kick in, but once it does, it is more long lasting. I haven’t experienced the pain since I take .25 ml of liquid methadone under my tongue every night at bedtime. It stays in my system. The side effect of constipation is handled by also taking one Senna at bedtime.

I’m guessing the pain was being caused by the tumors in my lungs and/or liver. My midsection continues to expand and is hard to the touch. I feel full quickly when I eat, and a lot of belching and discomfort occur. Although hospice is good at dealing with pain, they seemingly can’t do anything about discomfort. Lying down and a heating pad help, so I spend a lot of time “resting.”

Since I get tired if I’m standing more than 5 to 10 minutes, I don’t cook anymore except to heat up leftovers. I feel so grateful to have good friends (and a son who lives in Oakland) who shop, cook, and clean for me.

Because of the magic of Zoom and the groups I regularly participate in, I am not experiencing this stage of living/dying as lonely. I am more likely to feel overwhelmed by the number of visitors and Zoom obligations, and feel like I just need some time alone.

My curiosity about what happens to us after we die, and whatever fear I had about that, has been quelled by reading “The Afterlife of Billy Fingers.” It’s a true story of conversations Annie Kagan had with her brother after he died. Reading it stimulated my curiosity even more, and created even more excitement about getting closer to having that experience. He describes his new world as well as he can, while often saying there are no words to describe something. One of the predominant differences between this world and the next is that there is no judgement in the next world. There is nothing there to be anxious or afraid about.

Of course, there is sadness for me in anticipating leaving the familiarity of life on earth. This is the ultimate experience of letting go and it’s useful for me to remember the many opportunities I have already navigated of letting go. Change has been one of the constants in life, and it usually happens with some resistance.

I will continue to post in this blog as long as I can, and I treasure knowing that you are interested, caring, and cheering me on.