The bones in her beautiful face hurt. Already the cancer beast has gnawed its way through her spine and ribs, leaving her skeleton with a fearsome lace-like elegance on x-ray images. Now it is attacking her skull. She told me when she first learned of the new mets it never occurred to her that her skull included her face.
Marian has lived with breast cancer for nearly a decade. The second time 'round brought her back to the Bay Area. She's a few years younger than I am, has a 21-year-old son, a husband. We met two years ago at Commonweal's Cancer Help Project in Bolinas, California. Marian was attending Cancer Camp for the second time and was accompanied by her father. I attended solo. That week I formed some of the deepest friendships of my life: Marian, Wayne, and Tom, who left the earth one year ago today. Marian was in a lot of pain during the retreat and still her presence was serene, funny, wise. I wanted more than anything to know her.
Yesterday Marian allowed me to care for her. She is at home in the house she decorated with her husband, her mountain of a Newfoundland, Bessie and Len's sweet Mona. The hospice team visits but does not stay with her and she is alone between friends, family and caregivers. At 9:00 am I arrived with Peet's coffee and bran muffin, as requested. I learn that sometime before I arrived Marian may have shattered a bone in her shoulder or arm while reaching for something over her head. That's all it takes when cancer has made piecemeal of your skeleton. She's in horrible pain yet going to the emergency room is discussed and with the nurse's phoned-in advice, postponed. Instead, we increase the pain medication and use a heating pad. The visits from these friends are too important and the benefits from the hospital trip uncertain.
The day passed in a whirl of friends, oxycodone, calls to the hospice for advice, make-up application, chatting, hugs, foot massages, a special-order lunch run, and so much more. How honored I am to be part of my friend's transition. Is it enough, I wonder?
She tells me she would really like me to help in the evenings, from 9:00 - 12:00, so she can get ready for bed and watch movies while Len can get some rest. She needs help with this, and with getting upstairs to bed. I'm willing. Len's not so sure.
At 6:00 I know I must leave. Marian is weary; she has done too much but could not have been stopped. The next day she has planned to visit her niche at the San Francisco Columbarium. I will join her. But first, I have to return to my children and husband, who have played plumbers all day, installing a new toilet and repairing an old one.
The drive between the two homes ticks by quickly. When I arrive home the relief at being in my house, with my family, is washed away by the weariness of the day. There's very little room to feel anything else.
I'm asleep before 10:00.
Showing posts with label hospice. Show all posts
Showing posts with label hospice. Show all posts
Sunday, June 14, 2009
Sunday, May 31, 2009
Oklahoma, Where the Wind Comes Rushing...
When I let a lot of time drift by without posting I struggle for the right topic to resurface on.
There was the unplanned trip to Oklahoma following first a great-uncle and then a great-aunt's death. Both children and I traveled by plane and rental car to be present, gather with relatives unseen for decades (and never met by my children), and create "cousin bonds" I hope will stretch between Illinois and California. My mother's family, especially, is known for warm gatherings with open hearts and arms. This has been missing from my married life and I wanted our children to experience it. They soaked it up, learned firsthand about their family roots, and made me proud with their ability to adapt. It was 40 years ago that my mother took me out of school to accompany her to the funeral of her grandfather, in Oklahoma, and I still remember the mix of grief and joy the extended family experienced together. Now I was making a similar journey with my own children, and they were about the same age (7 and 9) I was those years ago.
When we returned home, exhausted from the many visits and reunions, the children asked me why they didn't know their uncle and his two boys, now 25 and 23. They had just met their aunt, my sister, and her children ages 7 and 10. Where was my other sibling? They knew that families didn't always get along - we had always been open although not specific about why some people were not in our lives - but this time I realized I didn't have an answer for them. I accepted that my brother had chosen not to be present in our lives but his kids were old enough to make up their own minds. With the confidence of a mother determined not to let her children miss out on an important family connection I took the information gleaned from the Oklahoma gathering and located one nephew through the internet. A gentle email inquiry and we discovered that he did want to get to know his black sheep relatives! Yahoo! We've begun an email correspondence with the eldest and will contact the youngest, too. While it may be true that you can't return to the home of your childhood, you can indeed create a home and childhood for your own family.
School is wrapping up and we're involved in the last concerts and plays of the year. Danny sang with his class, quietly, as he was overcome with stage fright. He'll get past that in a year. Gracie performed a flute duet, solo and played with her band with astonishing confidence. Tonight is the 4th grade musical and, having caught the early show, I can say it's really awesome! "Geology Rocks" is the title and it is a fun, creative way to learn about geology while singing some goofy songs. The California budget is threatening once again to destroy what's left of the public education system. This time we may really lose our fantastic library, the band and music programs, science specialists, the water to keep the playing field green, even some of the best teachers you can imagine. Our district's foundation for funding these "extras" (yes, can you believe a library is considered an "extra" in California?) is called SchoolForce and needs something like $500,000 by June 31, 2009 to save these programs and more. I'm going to put a link on my page in the hope that a generous benefactor will decide to donate via the Princess Hedgie Chronicles. Those nickels, dimes and $50 really add up!
On the cancer front, I'm happy to report a clean bone scan. NED, or "no evidence of disease" in the bones. I've gone back to Guru Beth, my incredible acupuncturist, for help with arthritis in the fingers, osteopenia, lack of spunk and weaning myself off aciphex, a treatment for GERD that may also be responsible for the fatigue I've attributed to treatment. Aciphex also interferes with the absorption of calcium, a problem when a body is already dealing with osteopenia. Nothing in this area is a covered insurance benefit, of course. Beth has offered me the best health advice of anyone and we'll just find a way to cover the cost.
My lovely friend, Marian, has ceased treatment and entered hospice care. Today I was finally able to reach her by phone and we scheduled a phone date for this Saturday. What I want to do is spend time with her. She is full of light and love. I don't know what I can provide her except my presence. I hope she trusts me enough to tell me what she needs and allows me to serve her.
There was the unplanned trip to Oklahoma following first a great-uncle and then a great-aunt's death. Both children and I traveled by plane and rental car to be present, gather with relatives unseen for decades (and never met by my children), and create "cousin bonds" I hope will stretch between Illinois and California. My mother's family, especially, is known for warm gatherings with open hearts and arms. This has been missing from my married life and I wanted our children to experience it. They soaked it up, learned firsthand about their family roots, and made me proud with their ability to adapt. It was 40 years ago that my mother took me out of school to accompany her to the funeral of her grandfather, in Oklahoma, and I still remember the mix of grief and joy the extended family experienced together. Now I was making a similar journey with my own children, and they were about the same age (7 and 9) I was those years ago.
When we returned home, exhausted from the many visits and reunions, the children asked me why they didn't know their uncle and his two boys, now 25 and 23. They had just met their aunt, my sister, and her children ages 7 and 10. Where was my other sibling? They knew that families didn't always get along - we had always been open although not specific about why some people were not in our lives - but this time I realized I didn't have an answer for them. I accepted that my brother had chosen not to be present in our lives but his kids were old enough to make up their own minds. With the confidence of a mother determined not to let her children miss out on an important family connection I took the information gleaned from the Oklahoma gathering and located one nephew through the internet. A gentle email inquiry and we discovered that he did want to get to know his black sheep relatives! Yahoo! We've begun an email correspondence with the eldest and will contact the youngest, too. While it may be true that you can't return to the home of your childhood, you can indeed create a home and childhood for your own family.
School is wrapping up and we're involved in the last concerts and plays of the year. Danny sang with his class, quietly, as he was overcome with stage fright. He'll get past that in a year. Gracie performed a flute duet, solo and played with her band with astonishing confidence. Tonight is the 4th grade musical and, having caught the early show, I can say it's really awesome! "Geology Rocks" is the title and it is a fun, creative way to learn about geology while singing some goofy songs. The California budget is threatening once again to destroy what's left of the public education system. This time we may really lose our fantastic library, the band and music programs, science specialists, the water to keep the playing field green, even some of the best teachers you can imagine. Our district's foundation for funding these "extras" (yes, can you believe a library is considered an "extra" in California?) is called SchoolForce and needs something like $500,000 by June 31, 2009 to save these programs and more. I'm going to put a link on my page in the hope that a generous benefactor will decide to donate via the Princess Hedgie Chronicles. Those nickels, dimes and $50 really add up!
On the cancer front, I'm happy to report a clean bone scan. NED, or "no evidence of disease" in the bones. I've gone back to Guru Beth, my incredible acupuncturist, for help with arthritis in the fingers, osteopenia, lack of spunk and weaning myself off aciphex, a treatment for GERD that may also be responsible for the fatigue I've attributed to treatment. Aciphex also interferes with the absorption of calcium, a problem when a body is already dealing with osteopenia. Nothing in this area is a covered insurance benefit, of course. Beth has offered me the best health advice of anyone and we'll just find a way to cover the cost.
My lovely friend, Marian, has ceased treatment and entered hospice care. Today I was finally able to reach her by phone and we scheduled a phone date for this Saturday. What I want to do is spend time with her. She is full of light and love. I don't know what I can provide her except my presence. I hope she trusts me enough to tell me what she needs and allows me to serve her.
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