Patient Empowerment Revisited: What Does It Truly Mean To Patients? – Patient Empowerment Network

Marie Ennis-O’Connor revisits the theme of patient empowerment to investigate what, if anything, has changed since her 2018 post. 
— Read on powerfulpatients.org/2020/09/22/patient-empowerment-revisited-what-does-it-truly-mean-to-patients/

Hearts and Bones, Hope and Stones

Monday at 4:30 my appointment began after a round of bood tests to insure my platelette count prevented me from “bleeding out.” A caring, attentive nurse practitioner at Stanford conducted a procedure to remove abdominal fluid, in which escaped cancer cells floated like cruise ships in a pond. My tummy, hard as a rock prior to the paracentesis, softened as the pressure on my organs, rib cage, intestines and diaphragm eased into a very sore bruised feeling abdomen.

Probably the 10th paracentesis in five and a half years, the fact of more ascites fluid drained from my abdomen may indicate metastasis unseen by the most recent films of June, 2020. Now we, (the radiologist, my oncologist, and me) can see if there’s really spread to any unknown abdominal areas. I may also have a new “lesion” (read: tumor) on my L4 vertebrae and I’m in some pain but nothing more than I’m used to. My girlfriend drove us three hours each way to Stanford.

Last week she had delivered to my house: a few years old barely used spa tub – a gift beyond words to express my gratitude. I couldn’t wait for Craig to fill it up and for us to submerge our bodies in the warm, healing water. This hot tub isn’t a luxury, but therapy for me on so many levels. She knew our new, slightly off grid house had no deep tubs – for all its spaciousness – allowing me to relieve my pain and help me sweat out the poisons from my targeted and not so targeted cancer therapies. I am in more pain than usual from the aromatase inhibitors I have to take daily. Taken along with the new estrogen and progesterone hormone receptor metastatic breast cancer wunder-drug, Verzenio, is my fifth and current protocol. We hope. We hope. We hope it works.

I took my first dip in the tub last night and it was heaven on earth.

Hope and Stones
On another note, as I entered a few places on our trips to and from Stanford, I truly wish people would realize that our lives matter too and their refusals to wear masks prevent people from access to healthcare and clinical trials that have to be postponed or even canceled due to the risk of infection from Covid.

It’s the numbers of dead that won’t be counted because it’s not a direct but an indirect result of lack of infection prevention. I wish we could see some real death toll numbers as that indirect result of Covid and the direct result of selfishness couched in “rights” of people to choose not to wear masks and stay at home just a little while in the grand scheme of things to stop this virus from spreading in our country. I don’t think the writers of the United States constitution had that in mind when they discussed the rights of the individual to determine their own fates, and it’s disturbing to see it in action.

I noticed a little girl maybe 6 years old in a cart with her mom not wearing a mask at a grocery shop last night. The lack of protection upset me – you’d think that parent would want her child protected and to protect others should she be a carrier. A broader picture representing this sad state of affairs. We do not have this under control.

Let these experiences open a new conversation, rather than shut us down and create another fight, another us versus them argument. Leave the violence for the ignorant and the voiceless. For we with terminal illness openly and frankly discuss death. The ending of life as we individually experience what is inevitable to all who live. We must adjust our hope as a society now. Hope is a mandate not an immovable emotion.
Having had front center seats to the deaths of people who’ve been the closest to me gave me an immeasurable gift in the common sense of meaning or value. Each changed me in a different way; changed at the level of the soul. I feel the soul is where hope persists inevitably. And with that in mind how can violence erupt where love also persists?

In the Jewish tradition when visiting a grave in a cemetery one leaves behind a stone. Not flowers. Those die. But the immovable stone – its also something on which we can build a path. And maybe there’s some truth to that. We build a path from stones from birth to death. We can not go back and change it and we do not know if tomorrow will bring us another stone on which we can continue to walk.

Living life in the now, in this breath, allows death to be a part of life without fear or loss. We can step into the unknown and float away our soul free of the body of pain and suffering for some of us. And the stones left in this world we can see as simple reminder that we were here.