Quack, quack, seat back!

(Life happens so fast lately I can't keep up. Here's something I wanted to share several weeks ago, not long after our house caught on fire, and our 11 year old daughter woke up her brother in time to escape from the fire.)

My kids fight incessantly over the best seats in the house, recently that means 2 recliners, which is basically all we have since our house caught on fire. "Quack, quack, seat back," one of them will chant as he or she leaves the desirable seat in order to get a snack from the kitchen. Invariably, one of the other kids will immediately slip into the vacant chair, causing a huge fuss when the original occupant returns.

One evening 11 year old Mary hopped up to go to the kitchen, chanting the quack quack as she went. Her 15 year old brother David hopped up and flopped down into Mary's chair. When Mary came back and surveyed this disaster, her face turned stony. "Quack Quack Seat Back," she said sternly. David shrugged his shoulders and smiled, "nope." Mary repeated the chant and Davy continued to smile.

Finally Mary stood up very straight and glared down at her brother with narrowed eyes, "I saved your life!"

Quack quack, she got her seat back.

First, do no harm

Copy of the letter I sent to my mother's doctors.

June 24, 2007

Texas Cancer Center

Aparna Chacka Kumar

Mark Saunders

910 East Houston, Suites 100/100-C

Tyler, TX 75702

Dr. Charles Perricone

Family Medicine

511 North High

Henderson, TX 75652

To Drs. Chacka , Saunders and Perricone:

I am writing this on behalf of my mother, Sara L. Hafner. She wishes to let you know that you have caused her great harm. She feels she was treated inhumanely and discourteously. On many occasions over the years my mother has told all of her family members that she would never agree to radiation therapy or chemotherapy for cancer treatment. When she received a diagnosis
of DCIS this past winter, she told each of her children that she would not receive radiation. She decided she would have the surgery only, wait six months and see how her health was before making any further decisions about therapy. We were all shocked and dismayed when she told us that she would be undergoing radiation therapy after all. But my mother is an intelligent, strong woman who has generally made wise and informed decisions, and so we didn’t try to dissuade her.

Late in May my mother called me. She didn’t feel good, she was experiencing a lot of pain and she felt troubled and alarmed. Her body, she said, was telling her that something was seriously wrong. And the doctor’s office (your office) was harassing her, calling her and insisting she come back for more radiation treatments. “I stink,” she told me, “I smell like burnt flesh. And I have so much pain. When I tell the doctor and nurses at the clinic, they just pooh-pooh my concerns, they don’t listen, they don’t care.”

On June 4 my mother was admitted to the hospital with elevated blood pressure & dangerously fast heart rate with fibrillation. Mother told me that the doctors at the hospital told her that they suspected the radiation had reached the heart and damaged it. When she was released from the hospital she was told to take aspirin, and given an appointment to see Dr. Perricone on June 28.

Someone please explain this to me: a 79 year old woman being treated with radiation for breast cancer has an emergency admission to a hospital for heart fibrillations, and she is patted on the head and told, take some aspirin and see me in three weeks???? What the hell??

When I next talked to my mother she told me she wished she had never agreed to the radiation. She said her family doctor, Dr. Perricone, had told her he never advised his patients to have radiation therapy. I asked her why he hadn’t said this before she started radiation, and she told me she hadn’t seen him. “He’s a family doctor, not an oncologist. I was told these people were specialists in breast cancer. I thought they knew what they were talking about. But all the papers I signed said that ‘all radiation is experimental’. I wish I had never started this. And the clinic keeps calling me and leaving messages and harassing me about finishing up the radiation. They don’t care about me at all. They don’t listen to me. They don’t care that they hurt me. This whole process has been dehumanizing and brutal.”

On Friday, June 22 at 5:00 p.m., my mother suffered a massive stroke which damaged almost all of the right hemisphere of her brain. Her left side is paralyzed. She will never walk or dance or paint again. She is facing months or years of therapy. She will probably never return to her beloved home and her favorite things. She may lose her home and all her antiques and property in order to provide skilled nursing care for the rest of her life. It’s possible she will suffer another stroke which will kill her, depriving her children, grandchildren, great-grandchildren, husband, sisters and brothers of her love and companionship. Or she may contract pneumonia or influenza in the nursing home which may also kill her.

When she was life flighted to Mother Frances in Tyler, the doctors were astonished that she had been released from a hospital a week earlier for heart problems and not given blood thinner medication. “Just aspirin?”

When I saw her a few days after the stroke, she said, “they’ve killed me. Those doctors. That Dr. Saunders, that asshole, praying over me before the radiation. He’s a phony, he’s a jackass. I wish someone would put hookwires in his balls and radiate him. None of them ever cared about me as a person. They didn’t listen to me.”

I said, “Mama, why did you have the radiation?”

She said, “They intimidated me. They bullied me.”

I have never seen my mother intimidated in her life. She is a strong, opinionated, assertive person. My mother is usually the one doing the intimidating.

I did a little bit of research on treatment of DCIS. While radiation is standard protocol, I was interested to note that 75% of women who do NOT receive radiation after surgery do NOT have a recurrence of the cancer. My mother is 79 years old – how many extra years of life were you hoping to give her by aggressively treating a slow-moving, non-invasive precancerous condition?

By treating her with a therapy that I’m certain she told you she didn’t want?

I don’t know what you said to her to make her agree to radiation, but know this: she never wanted it. She didn’t need it. She didn’t deserve what you did to her. My mother has hardly been sick a day in her life – she was active, intelligent, interested in the world around her, and tried to take good care of herself. I fully believe that her condition now is a result of your bullying, lack of concern, and carelessness in your medical treatment of her. At the very least you need to personally and sincerely apologize to her. Not that she will accept it or forgive you, but you still need to offer it. Groveling is encouraged.

My mother told me she regretted ever getting a mammogram, ever listening to what you doctors had to say. She regretted the biopsy, which she said was like medieval torture, she regretted the surgery, more brutality, and most of all she regretted having the radiation. “Don’t you ever do it,” she told me and my sister. “We won’t, Mama,” we said. “You’ll regret it if you do,” she said.

“I already regret it, Mama,” I said, looking at her sorry state.

With all the media attention on breast cancer and mammograms, pushing, pushing, pushing women to get mammograms...this experience with my mother makes me wonder how much the medical profession genuinely cares about women. It seems our breasts have become one of Big Medicine’s great cash cows. You can bet that my sister and I will be telling every woman we know about this horrific and tragic experience.

Here are my mother’s instructions to you and your staffs:

· Treat people humanely

· Listen to your patients

· Respond appropriately to what people say (not, “oh, you’ll be fine, the side effects will go away, don’t worry about it.....”)

· Show some sincere concern

· Practice good medicine, as opposed to “this is the way we always do it (& we get paid so much more when we do it this way)”

· OR GET OUT OF THE HEALTH CARE FIELD

We are also including an attractive sign for you to hang on your office wall where you can see it every day. Sorry we couldn’t afford a frame, we have to save our money for our mother’s nursing care.

Sincerely,

Brenda G. McDonald

The sign was simply the words : First, do no harm.

Tremendous fun to tragedy & trauma

I had a wonderful weekend in Chicago with my 3 younger children and my oldest daughter, her husband and their baby, Guthrie. I got to babysit - yay! Except poor little Guthrie won't take a bottle, he just wants his mommy's booby. So we had a few tragic hours when he was sure he had been abandoned to his heartless, empty-boobied grandma. But when Mommy reappeared there was rejoicing in babyland!

More about Chicago later.

On Sunday morning in Chicago I received a phone call from my brother - our mother had had a massive stroke and they didn't think she would survive. We drove home to Grinnell, I talked with my sister, and on Monday my sister and I started driving toward Texas. Tremendous thunderstorms all the way down through Missouri on Monday. Hot, hot, hot on Tuesday. We arrived at my mother's house late Tuesday afternoon.

So now there is more to do than I understand. I am angry, sad, confused, helpless. Mother is coherent, sad, angry, funny, depressed. She gave us instructions for her funeral : no sadness, no hymns, only music by the Tijuana Brass. Pitchers of margaritas, chips and salsa. She told us what she wants on her tombstone and started to cry. "I loved to dance," she said.

But she could survive many more years - just paralyzed on her left side. No painting, no dancing, no walks in the park. I asked about wheelchairs and the neurologist said, probably not. I don't understand. I don't know what to hope for.

Hold fast

A few nights after the fire I couldn't sleep. I sat in the living room of our new house, amid the packing boxes and junk we've already accumulated and left in piles here and there...and wondered, what do I do, what do I do. Not about insurance or repairs or replacing things. But what do I do with my dream?

For 45 years I've nurtured a dream, and for about the past 10 years I've known in my heart that my dream just ain't gonna happen. Choices I made, or choices others made for me that I accepted, however half-heartedly, have altered the course of my life and pushed my dream ever further away. But I kept remembering that line from the Langston Hughes poem: Hold fast to dreams... But what if you can't hold fast anymore? What if holding fast hurts more than letting go?

So I sat in the dark and cried a little. And remembered that I used to pray, and that when I prayed I felt closer to God, and when I feel close to God, I feel safe and cherished. And I thought about so many of the books about prayer that are popular today, and how they make all sorts of promises: If you just pray the right way, you can have everything you want, wealth and success, all your dreams will come true, because that's what God wants for you! Anyone who pays the slightest bit of attention to the news knows that prayers don't work that way. Many people will say that prayers don't work at all. Just look at Darfur - you think those people don't pray?

But I digress. I must have my little rants at those other Christians. Where was I?

Dreams. Prayers. Oh yeah.

I needed to pray. But what should I pray for? All the usual stuff, but for this specific time in my life, when I don't know what to do with my dream, how do I pray about that?
And I picked up a pen and a notebook and I scribbled: "Pray for what God wants for you, not for what you imagine you want."

Last night I was reading a book by one of my favorite writers, Anne Lamott (I call her Annie, as if we're friends), and she quoted another one of my favorite writers, Kathleen Norris:
"Prayer is not asking for what you think you want, but asking to be changed in ways you can't imagine." I sat up really straight when I read that passage. And read it again, and again. Okay, I'm listening.

When I feel my mind exploring that sore, tender spot where my dream used to be, I catch my breath until I remember. And I hold fast.

"For I know the plans I have for you, for your welfare and for good, to give you a future and a hope." Jeremiah 29:11

The pinprick of light at the end of a very long tunnel

I had been wondering why our credit union hadn't responded to our house fire. It seemed very weird to me that they weren't interested in their investment. They've made a lot of money from us, since we were incompetent in watching our mortgage payments and hadn't realized years ago that the loan had gone into a reverse amortization. (We now owe $27,000 more on the house than what we agreed to pay for it in 1991.)

Anyhoo...come to find out, our credit union reps had been avoiding us, because they made a very serious error, and so did we. Years ago our homeowner's insurance was cancelled. At that time we received a letter from the credit union informing us that we must have insurance on our mortgaged house and if we didn't procure it, they would apply insurance to the house and add the premium payments to our house payments. Being ridiculously ignorant and lazy we thought, okay, do that. And we assumed they had. But they had not. Not only had they not procured insurance for the house, they actually filed a paper waiving the insurance, without informing us.

So now we have a burned up house, no insurance and a mortgage we still have to pay for a house that is unlivable, unsellable and unrentable. Do we have savings to fix it up ourselves or raze it? We do not.

My dreams of being debt-free are wisps of mist. The credit union may pay for damages out of their own bigger pockets. We may have to take them to court. Either way we are exposed as extremely incompetent folks. Our life is wide open to judgment and criticism. I want to leave for Tahiti and forget the whole thing. But I can't. Somehow I have to overcome my claustrophobia and start crawling through that very long and narrow tunnel and working my way toward that tiny pinprick of light. There is hope yet.

P.S. We found our 2 missing cats, safe and sound. The 2 injured rats have recovered. Whoopee.