Diana graduated at the top of her high school class (being an unapologetically smart Texan girl in the 1950s), started college, and married the first man she dated who was her intellectual equal. They moved to California in 1960, and had three children. As soon as I, the youngest, went to kindergarten, she went back to college to finish her degree. At her knee, my brothers and I learned compassion and a strong sense of personal responsibility. She valued intelligence, constructive debate, storytelling, and would never tolerate sexism or bigotry. Each of us has taken the strong progressive values we learned from her and found our own unique way to live them.
Diana went on to earn a Master's Degree in Psychology, and to finish coursework for her PhD, which she would have earned if she'd ever had the time and desire to finish the dissertation. Instead, in her mid-thirties, she got divorced and went to work, somehow managing to raise the kids and pay the bills.
In addition to her smarts, she had a huge work ethic: every time she tried something new, she rose to the top of the heap. During her career, she was a School Psychologist, then a School Principal, and eventually the Director of Special Education for the county we lived in. Somewhere in there, she met the love of her life; they were married 24 years ago this summer. After twenty-some years in public education, she'd had about all the stress she could take. She and her best friend, a fellow educator, quit and started a conference and meeting-planning business, eventually winning a major contract from the state's Office of AIDS. My mom learned a whole heck of a lot more about the GLBT community than she knew before, and enjoyed every minute of it.
She retired from her second career several years ago. Given her robust health, she was planning for many more years of travel and activity before she eventually slowed down. Less than a year before her diagnosis, she invested in a women's fitness franchise, both to generate some retirement income and to keep herself busy and fit. She sang with a local chorus of retired women, co-wrote a self-help book with another close friend (due to be published soon), grew vegetables in her garden, traveled with her husband and with her friends, rejoiced in her gorgeous and brilliant grandchildren, read countless paperback novels, volunteered at the food bank and for Hospice, and generally led a very full and vigorous life. She never failed to commiserate with me when I railed against the war and the Bush administration. I remember her telling me that she actually picketed near the freeway at the start of the current war (which I thought was brave of her, considering the rather conservative community in which she lived and her general shyness).
My beautiful mother, July, 2006
(four months post-diagnosis)
EVERYWHERE I TURN, I RUN INTO CANCER
Cancer has been all over the news and all over dKos of late. There are so many diaries that have touched me, especially Carnacki's great homage to his/her father, Let's fight cancer, LFC II, and LFC III - all are wonderful calls to action. That trilogy was followed by a "cancer roundup" diary, whose comments are almost unbearable. ltecato's contrarian personal point of view was an insightful take on the "bravery" aspect of cancer.
There are countless diaries and comments sharing heartrending stories of loss... like this. And this. And this. Even Tony Snow's cancer started a firestorm of debate here.
Some of our own here at dKos have been diagnosed recently with cancer, many others have fought and survived, still others are living with cancer in their lives and families, and many more have recently lost loved ones to some form of the disease, just as I have. We all come out of the woodwork on these diaries, and it helps to know we're not alone. Every weekly installment of pastordan's "Brothers and Sisters" contains numerous prayer requests for those suffering from cancer. It's just everywhere... like a meta-cancer we're all infected by.
At the end of 2004, I remember talking with my mom about Elizabeth Edwards's first breast cancer diagnosis. We had both come away from the 2004 election absolutely in love with Ms. Edwards's intelligence and authenticity, and we were stricken at that diagnosis. My mother HATED cancer; it had claimed both of her father and mother (leukemia and lung cancer, respectively). Diana wasn't able to be with her father when he died, but my grandmother moved in with her when it was time for hospice (or palliative care), eventually dying in my old room, with my mom by her side.
As hard as it was, we viewed my grandmother's passing as a positive one. My mother was grateful for the hospice nurses and volunteers who came every day to help. A few years ago, she got trained as a Hospice volunteer and began to "pay back" the kindness by helping others through their end-of-life process.
HOSPICE, EUTHANASIA and END OF LIFE
When Oregon passed its Death with Dignity legislation ten years ago, my mom and I always "joked" that if either of us ever needed it, we'd take the other one up there. After watching her own mother's pain, she always swore she'd rather go quickly, and on her own terms.
Funny how so many of us believe that... when we're healthy. Her husband is very much on the other side of that fence - despite his mostly progressive views, he is rather conservative on "life" issues - he is very much against abortion and euthanasia (and capital punishment, for that matter). For years, my mom knew that her beliefs on this subject were more in line with mine than with her husband's, and she always told me that I would be the person named in her medical directive to make end-of-life decisions for her. EXCEPT, when she was diagnosed with her terminal disease, she chose her husband instead.
And it's a good thing, too. She had a major crisis last August, getting to the point where the nurses all agreed that she was within 48 hours of dying. But because the scans indicated my mom's tumor had actually shrunk a bit, my step-dad insisted that all she needed was nutrition, and got the hospital to start her on IV nutrition (a very expensive proposition, called TPN). It saved her life. She had an almost miraculous turn-around, regained over 30 pounds, started chemotherapy again, started exercising again, reached her 68th birthday, and even flew out to Texas for Christmas with all her grandchildren, including one she hadn't seen in 23 years. It really felt like Christmas at my house. And I realized: if I had been her medical guardian, she would have died in August, because I would not have fought for the nutrition, and would have instead opted for hospice. Bless my step-dad for refusing to quit.
This time, however, it was a different story. It all started in February, with a pain in her back. That was never adequately diagnosed, because she turned out to have numerous other medical issues - anemia, clots in her legs, UTI, dehydration, and a terrible infection under her port-a-cath (a device that's implanted in the chest of cancer patients, for them to receive their chemotherapy without endless needles). When that was removed, so was her only access to nutrition and fluids, so she became somewhat dehydrated. All of these things snowballed, and in a few weeks it became clear, even to my step-dad, that things wouldn't be getting better. The day he signed the hospice order was a sad day. I mean, I was really glad that my mother would soon be out of her pain, but for him to admit defeat was almost the worst thing. It occured to me that this sort of hospice is really a form of palliative, passive euthanasia.
I feel conflicted about "true" euthanasia. I do believe that if she had asked, and we had planned for it, I could have done it for & with her. That didn't happen, though, despite many discussions about it early on in her illness. It was really hard when my mother asked me to bash her head in or smother her with a pillow. It was hard to watch her try to beat herself in the head or smother herself, unsuccessfully. She had a pain-relief button she could press when she needed to, and in her delirium, it would become many things - lip balm, a telephone to call 9-11, or a weapon with which she hoped to inflict a mortal blow to herself. It was just all very, very hard. She was so afraid of dying - but so afraid of continuing to live in her state of pain and anguish. We treat our pets better than our people.
As I sat next to her bedside, whiling away the hours as she tried to die, I read about Compassion & Choices, the current incarnation of the Hemlock Society. Certainly, I know that my mother didn't need to spend days after the failure of her liver and kidneys, waiting for the poisons to finish her off. The problem is, her treatments left her never quite "in her right mind," which would be necessary for her to choose a Death with Dignity. The most striking event happened just prior to her death: I said to my step-father, "people shouldn't have to live like this," and he actually agreed. He said he never thought he'd get there, but he did. If someone had walked in and given us a way to deliver her from this slow death, he would have taken it.
I can say that my worst fears did not come about. Her breathing, which was loud and rattling (it's not a cliche) simply got slower and slower, until it stopped, peacefully. It was a lovely deliverance.
TPN & MEDICARE PLAN B
One note about the TPN (Total Parenteral Nutrition): it gave my mother six extra months of life, five of which were actually worth living. It also costs about $150 a day. We were lucky: my mother had a decent Medicare supplemental plan, and she had enough money to cover the "donut hole" in her Medicare Plan B coverage. It did make her worry, though, and worrying isn't exactly conducive to healing, is it? I shudder to think about so many others who are not as lucky - who lose their life savings or their homes to cancer, along with their loved ones. The hospital's billing person told us that Medicare is generally very reticent about paying for TPN, and will only do so if the patient will need it for a minimum of six months (or life). This makes almost no sense to me at all.
PANCREATIC CANCER and POLITICAL ACTION
This is a relatively rare disease, but 32,000 Americans are diagnosed with it every year. The risk factors include smoking, being diabetic, having gingivitis (of all things), and eating a lot of cured meats. It's considered the "deadliest" cancer, because the disease is usually quite advanced before it's diagnosed, and because the surgery (if one even qualifies for it) is difficult and often deadly itself.
PanCAN is an organization which promotes research into treatments and cures for pancreatic cancer, specifically. Their site is informative; I recommend that you take a look. PanCAN's recent political action includes promotion of increased funding for the National Institute of Health's National Cancer Institute (NCI).
The U.S. Congress has begun the annual process of deciding how much funding should go toward medical research, including cancer research. Representatives Edward Markey (D-MA) and Dave Reichert (R-WA) have authored a letter asking House Appropriations Chairman David Obey (D-WI) and Ranking Member Jerry Lewis (R-CA) to provide a minimum of a 6.7% increase to the National Institutes of Health (NIH), which includes the National Cancer Institute (NCI) in each of the next three years. PanCAN supports the goal of this letter.
The organization will be lobbying Congress for increased funding during a special Lobby Day, encouraging people whose lives have been touched by pancreatic cancer to come to Washington, and giving them training on how to effectively conduct a meeting with their elected representatives.
PanCAN is pleased to announce that we will be holding our first all-PanCAN Lobby Day from Sunday, April 22 – Tuesday, April 24, 2007 in Washington, D.C.
PanCAN’s Lobby Day will give you a chance to tell your Congressional Members and their staff how important pancreatic cancer research funding is to you! We hope that as many of you as possible will join us as we carry our message to Congress.
This would be a great way to promote a good cause AND connect with your government effectively. Unfortunately, when I checked the site yesterday, the registration to participate has closed. Please, if you are so inclined, keep your eyes open for ways to participate in the future.
IF YOU MADE IT THIS FAR, thank you.
I know this was a long diary. I started it the day my stepfather decided it was time for Diana to have hospice care. (When he told her of the decision, she had enough awareness to thank him.) I have worked on it whenever I felt like I needed my mom, and it brought me a lot of tears.
Even a 41-year-old can feel the grief of a motherless child. I owe her my life, and I am so thankful for every day that I had with her. Hers was a life that will resonate for a long time after she's gone.
I love you, Mom. Godspeed.
