I've been reading up on strokes, trying to learn what my mother is facing, what her prospects are, and it's given me some hope.
One book, The Invaluable Guide to Life after Stroke: an owner's maual by Arthur Josephs has been quite informative. In describing the behavior of a person who has suffered damage to the right hemisphere of the brain the author cautions that the stroke survivor may talk too much.
I think back on my mother's behavior as I sat by her hospital bed. Talk too much? She certainly talked a lot. But compared to most people, my mother always talked a lot. Maybe she was talking too much. Or not. It's a matter of opinion, isn't it? My mother loves to talk, and she has always talked a lot. How can I tell if her talking a lot is a symptom of her brain damage or an encouraging sign of normal behavior for her?
My mother and I used to talk on the phone a lot. Correct that. We used to spend a lot of time on the phone with each other. My husband and kids always knew if I was on the phone with my mother because I wasn't saying anything except, "uh-huh, oh, is that right, okay, yes, I'm still here." That last comment because eventually during her conversation my mother would stop and ask, "are you still there? You're not saying anything."
Sometimes during our phone chats I would start craving a cup of coffee or a piece of pie - and because we have an old fashioned phone with a cord, I was tethered in place. When I could tell she had started on another one of her favorite topics (Michael Jackson-who is not a pedophile, handsome politicians - she's got a crush on Al Gore, whatever horror is current in the national or world news) I would quietly set the phone down, step across the room and pour myself a cup of coffee or retrieve the pie from the fridge and cut a slice for myself, then go back to the phone and pick it up and listen - sure enough, she would still be happily chattering away, and I had my coffee and pie to tide me over for the duration.
I miss talking to my mother on the phone. I hope she gets better soon.
Friday, June 29, 2007
I've been reading up on strokes, trying to learn what my mother is facing, what her prospects are, and it's given me some hope.
Sunday, June 24, 2007
June 24, 2007
Texas Cancer Center
Aparna Chacka Kumar
910 East Houston, Suites 100/100-C
Tyler, TX 75702
Dr. Charles Perricone
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.
Brenda G. McDonald
The sign said simply: First, do no harm.
Tuesday, June 12, 2007
grow an additional two arms & hands. All the tasks we're expected to accomplish while holding a child! (or accomplish while we are not holding a child who is instead clinging to our legs and
sobbing piteously, or in another room out of sight doing God knows what).
Now that my children are more self-sufficient - they walk (even though they'd rather be driven), they talk (back), they manipulate tiny knobs and buttons on video game controllers
(& they manipulate their parents) - the need for me to have extra hands is not so apparent.
But at lunchtime today, it all came so clearly back to me. I was frying tortillas and grating cheese for a meal, and my 11 year old daughter wordlessly backed up to me in her bathing suit, and held out a bottle of sun block. As if she couldn't see that both my hands were busy, and busy in a way that did not easily lend itself to interruptions. I looked at her and waited. She eventually looked over her shoulder back at me. I glanced at the pan of hot oil, the tortilla close to burning in it, at my fingers holding tongs, at the pile of chopped lettuce and cheese on the cutting board. She waved the bottle of sunblock in tiny circles in case I didn't grasp her meaning. I shook my head. She frowned. I shrugged. She stalked off to sulk, and I continued cooking.
In time, the meal was prepared and my daughter's shoulders and back were protected from sunburn. But it still would have been easier if I had been Octopus Mom.
P.S. A few days after I wrote this, I drove myself and my kids to Chicago to meet with my eldest daughter and her husband and their 3 month old son, Guthrie. To say that Guthrie likes to be held is a serious understatement. This little boy feels incomplete if he is not physically attached to another human body, preferably one with milk-filled boobies. (I am not criticizing, I believe that Guthrie's attitude is completely natural and I support him in his endeavors to be constantly enveloped in his mother's arms.) Over and over again during that weekend my daughter, Sarah, said, "I don't have enough hands to do everything, if only I had another pair of hands!" I just smiled and said, "yep."
PPS-a few days ago I was helping a woman at the library - her twin daughters were pestering her with requests and she finally said, "I can't! I don't have enough hands!"
Sunday, June 3, 2007
I have a difficult, stormy, hurtful relationship with my eighteen year old daughter, who lives with me. From conversations we have during calm moments, I think the relationship is more difficult and hurtful for me than it is for my daughter. The therapist, Kris, has seen both of us over the course of a year or two.
During the intake process Kris asked me to describe my relationship with my mother. I said, "my mother and I are good friends now, but I've had to learn over many years to not take things too personally. I know she loves me, but she's intrusive and critical, bossy and judgmental. She stomps all over me. She always gets her way."
Kris looked up and smiled at me. "Do you realize you just described your daughter, and your relationship with her?"
I couldn't answer.
Kris smiled again, and said, "If you've learned to not take things your mother says and does personally, do you think you could do the same in your relationship with your daughter?"