Saturday, April 26, 2008
Do you have a purpose?
Well today was spent painting my dad's room twice. Erica picked out a color that looks like melted chocolate mint ice cream. Made me sick to look at it. I mean physically ill. So, after we painted the second coat of ick we realized it was not going to darken and change colors magically and we could stand it. Nope. Off to Walmart we go. Now we painted it cream and chocolate. It looks so much better. Now David has been working on the flooring all night. We should be ready to go by tomorrow as far as touching up the paint and getting things semi ready. I'm not planning on doing anything as far as furniture until the hospital bed gets here and the hoyer lift on Monday. He was moved from one room to another today. Now he does not need a "sitter" and has been put into the main hospital population. This means he is improving. He is a true miracle. Wonder what his purpose in life is. There must be a purpose. Shouldn't there be a purpose? Don't we all have a purpose? Ah, the great question of life. I miss my friends. I miss my old life. I miss my dad.
Friday, April 25, 2008
Move along.. Nothing for you to see here.
Today I am totally wasted. TOTALLY WASTED I tell you. Spent my morning getting new flooring for my dad's room. Last night the boys and their friends pulled everything out of his room and then pulled out the carpet and padding. We burned his mattress. You know the mattress I just bought him less than a month ago. Smelled horrid so it had to go. Now, on Monday I have a hospital bed coming, a hoyer lift and a heavy duty potty chair. I'm feeling a bit anxious about this decision. I want to be able to care for him, but if he requires 24/7 or a lot more care than I am already doing he may have to go to a (gasp) nursing home. Then if I put him in one of "those" facilities I will feel guilty if I don't go and sit with him a couple of hours a day. This way the CNA's will know he is loved.
I sent a letter to the administators of this hospital today as well as the supervisor of all nurses. I can't believe some of the staff here. Assholes. Need a wake up call. Probably won't hear back but feel better having expressed myself. I called the administation office and they told me they "couldn't" give me the top guys email address. I started asking if it was the hospitals policy or his private policy not to be in contact with patients or their families. Ha, 4 minutes later my "friend" in administation said she had gained permission to give me his email address. What total and complete horse shit. I'm not going anywhere. I live here. Wouldn't willingly be admitted to the hospital. All the kids know if mom has to go to this hospital, "Sew me up and ship me to Portland". I'm not a hospital snot, it is just that I want a doctor who see's more than 3 patients a day and one that has patients who are actually under 75 years old.
We (Mostly Erica) scrubbed my dad's bathroom spotless, she painted it, got a shower curtain, towel holders etc. Now my dad will only use it for a shower. We now have 3 bathrooms for everyone to use. No one would use my dad's when he used it because of the leakage. It is kind of nice having a bathtub after 4 years.
I'm hoping that the nurses coming out 2-3 times a week the first couple of weeks home will help me make any adjustments I need to make in his care. I'm actually scared of this new venture with him. He has not stood on his feet for even one minute since his arrival a week ago today. Weakness. My weakness too. Why is it I always end up taking care of the infirm? What? Why me? I told everyone here Gramps is the last. Someone else can stand up to the plate after him. Someone else can take on the burden of the ox. I can't remember right now the saying, but you get the drift.
Now we are going to paint Dad's bedroom and start putting down new plywood to the places that are ruined in the floor due to piss. Piss=peeing where it isn't supposed to be. UGH. I hope this blog seems rude, I just am so tired. Emotionally, physically and mentally. I haven't done a lot besides follow the staff around and watch everything they have done to my father. I have questioned everything and asked "Why?" . Bet they will be glad to see me go as well. It is hard to be rude/mean/short tempered when the patient's family up your ass watching everything. I think it is the best way to get good care.
Wednesday, April 23, 2008
Dad is out of CCU
Well today my dad is better. Go figure. I'm so sick and tired of (every day since Friday) the doctor's telling me he is "not doing well," "Not expected to make it". Perhaps we should talk feeding tubes. OMG. Then last night I made the "executive decision" and had them take off the mask (that is kind of like being intubated.) It forces air in and out of his lungs without the tubes. He was going crazy screaming and yelling with the mask on and it was about 3 AM and he was in restraints. Want to see heart break? Watch a loved one be restrained in hand restraints and then sit back and have to watch. Want to watch in horror as your father screams and sobs? He is very claustophobic. Bad disease. Well, I knew the mask was making him so crazy. Then add that to his hands being restrained and it makes for a sick time. So back to what I was talking about in the beginning of this. About 3 AM I decided I had watched my dad struggle with his restraints and scream his last words to me. We took off the mask and just put him on the nasal canula. He started to relax right away. Within a few hours he was speaking. Not coherently, mumbling quite a bit but still makes enough sense to be able to hear him call me a "Shit ass". Ha.
You know yesterday when he was lucid (about 10 hours after the feeding tube was discussed) we took off his breathing mask he sat up in bed and told me "I told you no intubation". I said "Right dad, didn't do intubation, you had a mask on". He thought for a minute and said to me and directly to me with direct eye contact "I thought you loved me?" I was shocked at this question. I do everything for him, little asshole. "I said Dad, I have not left you side since you got into the hospital" Little pause and then he said "Then you need to respect me." He was talking about the breathing machine. I was so happy that he made his wishes known to everyone. He is absolutely back. The doctor just came in (1 of the 3) and said it is a real miracle my dad. He was telling my Dad he didn't think he would make it through the night and was feeling sad for his family. Then much to his surprise my dad was up sitting in the bed and talking. I also told the people to quit doping him up. They were giving him 100mg of Haldol, xanax, alprazalam, and something I can't remember. I asked the doctor numerous times why so much medications? Worried about the build up? ETC.
You know yesterday when he was lucid (about 10 hours after the feeding tube was discussed) we took off his breathing mask he sat up in bed and told me "I told you no intubation". I said "Right dad, didn't do intubation, you had a mask on". He thought for a minute and said to me and directly to me with direct eye contact "I thought you loved me?" I was shocked at this question. I do everything for him, little asshole. "I said Dad, I have not left you side since you got into the hospital" Little pause and then he said "Then you need to respect me." He was talking about the breathing machine. I was so happy that he made his wishes known to everyone. He is absolutely back. The doctor just came in (1 of the 3) and said it is a real miracle my dad. He was telling my Dad he didn't think he would make it through the night and was feeling sad for his family. Then much to his surprise my dad was up sitting in the bed and talking. I also told the people to quit doping him up. They were giving him 100mg of Haldol, xanax, alprazalam, and something I can't remember. I asked the doctor numerous times why so much medications? Worried about the build up? ETC.
Here is another thing I have been thinking/wondering about. Why is it that now that my dad is in the hospital everyone comes every day to see him. I'm telling you, I can not believe the people coming every day. These same people are crying all over my dad when they think his day is numbered. In reality, these same people have not been out to see my dad, sit and chat, take to lunch, call on the phone etc. Hope especially gets me. She has been here 2 of the nights he has been here. She sits and reads books while I take care of my dad. I think she is pretending she is not here or she is on vacation from the kids. When she does actually stand up she wrings her hands acting all concerned and tells me what to do. Unbelievable. I guess I should just be glad she is here sometimes so I'm not always alone. The other morning when we thought he was going to die I was left standing all alone. Standing freaking alone. I called Hope, no answer, Serina's cell went straight to voice mail. I finally called David at work and had him come and sit with me until the troops arrived. This experience has really left me bewildered.
Tuesday, April 22, 2008
My dad is crazy sick!!
My last remaining parent is in CCU. It is a crazy phenomenon when you are facing the bleak outlook of becoming an orphan at the young age of 25? Okay, those of you who know me know that I'm a wee bit older by say... 19 years older than 25. You mathematically challenged should know that means I'm nearly 45 and will be parent less. I'm sad beyond words. I still have tons of people calling about puppies etc. I usually am so enthusiastic about talking dog. I can't fathom the idea of talking dogs. I have the most beautiful puppies born and I can not think about them.
The picture you see is of me and my Dad and sister at Red Robin.
Thursday he started coughing, like he had caught my cold. I have been sick off and on this past month. I'm blaming the anesthesia for anything that ales me for the first 3 months. I only blame the anesthesia because that is what the others tell me. I don't know, I could be getting sick more often.. IE. colds, coughs, head aches etc as rigor mortis is knocking on the back door. I'm half way to the other side of the daisies myself. When you are forced to sit and watch someone you love die it sucks hard. Not a good way to remember a loved one, but no one wants to die alone.
Anyways, back to last Thursday, he started coughing hard. Coughed all night and he coughs loud. I kept asking him why he was making such a racket. By Friday morning I could not decipher a blood pressure or figure out where his lungs were. I did not hear wheezing. She a tightness. Thank you Jesus one of the home care nurses called and was able to come in to my house right away and she could not get a blood pressure on him either. So, luckily Colton was home and was able to help me bring Grandpa to the ER. We were in the ER less than 15 minutes before they had him upstairs in Critical Care Unit. Yikes. Today is, I think Tuesday. When you are in the hospital realm all the days blend together a bit. You know, I'm not trying to trivialize other peoples struggles just to explain what I am doing when I'm doing it. My dad has all night been begging me to untie him. When I did he pulled out his IV and the nurses don't like to have to redo work. Who would really? Certainly not me. I feel another long, long night ahead for me. I'm dead dog tired. I hope he will sleep a little this night instead of keeping me awake all night and then he gets to sleep all day. If that happens I may go home and take a shower. I wonder how many days deodorant is supposed to last? Ha. I'm so funny. I think it is actually turning into delirium. I started typing this at around 9 pm and can't remember what I typed previously. Kind of being on drugs myself except none of the fun and all the raging headaches. Man. Peace out.
The picture you see is of me and my Dad and sister at Red Robin.
Thursday he started coughing, like he had caught my cold. I have been sick off and on this past month. I'm blaming the anesthesia for anything that ales me for the first 3 months. I only blame the anesthesia because that is what the others tell me. I don't know, I could be getting sick more often.. IE. colds, coughs, head aches etc as rigor mortis is knocking on the back door. I'm half way to the other side of the daisies myself. When you are forced to sit and watch someone you love die it sucks hard. Not a good way to remember a loved one, but no one wants to die alone.
Anyways, back to last Thursday, he started coughing hard. Coughed all night and he coughs loud. I kept asking him why he was making such a racket. By Friday morning I could not decipher a blood pressure or figure out where his lungs were. I did not hear wheezing. She a tightness. Thank you Jesus one of the home care nurses called and was able to come in to my house right away and she could not get a blood pressure on him either. So, luckily Colton was home and was able to help me bring Grandpa to the ER. We were in the ER less than 15 minutes before they had him upstairs in Critical Care Unit. Yikes. Today is, I think Tuesday. When you are in the hospital realm all the days blend together a bit. You know, I'm not trying to trivialize other peoples struggles just to explain what I am doing when I'm doing it. My dad has all night been begging me to untie him. When I did he pulled out his IV and the nurses don't like to have to redo work. Who would really? Certainly not me. I feel another long, long night ahead for me. I'm dead dog tired. I hope he will sleep a little this night instead of keeping me awake all night and then he gets to sleep all day. If that happens I may go home and take a shower. I wonder how many days deodorant is supposed to last? Ha. I'm so funny. I think it is actually turning into delirium. I started typing this at around 9 pm and can't remember what I typed previously. Kind of being on drugs myself except none of the fun and all the raging headaches. Man. Peace out.
Monday, April 21, 2008
What's up with Heather??? DNA sucks sometimes.
SPECIAL COVERAGE
Featured news packages from around Oregon
Facing Fatal GenesNorthwest families and scientists are combating DNA defects to keep women at high risk of breast and ovarian cancer from ever getting the disease.
Home
The Boulanger Curse
The Science of Saving Lives
Q & A
The Boulanger Curse
Four Oregon sisters wage war against a gene mutation that puts them face to face with the cancer that killed their mother and threatens their daughters and sons
By Julie Sullivan
The Oregonian
Heather Boulanger Christian winced, chest aching. Eleven days after surgery, she pulled a sweat shirt over her bathrobe, slipped on Crocs and stepped bare-legged through Grants Pass snowdrifts to reach a family baby shower.
Featured news packages from around Oregon
Facing Fatal GenesNorthwest families and scientists are combating DNA defects to keep women at high risk of breast and ovarian cancer from ever getting the disease.
Home
The Boulanger Curse
The Science of Saving Lives
Q & A
The Boulanger Curse
Four Oregon sisters wage war against a gene mutation that puts them face to face with the cancer that killed their mother and threatens their daughters and sons
By Julie Sullivan
The Oregonian
Heather Boulanger Christian winced, chest aching. Eleven days after surgery, she pulled a sweat shirt over her bathrobe, slipped on Crocs and stepped bare-legged through Grants Pass snowdrifts to reach a family baby shower.
Audio Slideshow - Heather Christian talks about why she chose surgery and shares her experience with it. WARNING: This slideshow contains some graphic content. Heather Christian says she shared her story with The Oregonian to help others. You can email her directly about her experiences at heatherbchristian@gmail.com A message from Heather:
Pacifier-shaped balloons bobbed as sisters, aunts and cousins celebrated the latest Boulanger baby girl.
Heather, better than most, knew just what that meant.
After the gifts, Heather willed herself to her feet and drew five nieces into a bedroom. She opened her robe.
Two incisions sliced the pale skin where her breasts used to be. Black thread pulled the puckered skin tight. Under each arm, bloody fluid pulsed through drain tubes into small canteens tucked into her waistband.
"This," she said, "is what you need to know."
Every family propels its peculiarities forward. The DNA that delivered them red hair, porcelain skin and statuesque shapes also carried a defect, like a mistyped password or a misdialed call. The mutation could cause other cells to grow out of control, causing cancer. Who carried it was random. When it became obvious, through tumors, was unknown. But long before scientists identified the breast-cancer gene, Heather and her sisters were convinced that a malevolent force was at work in their family: The Boulanger Curse
—
To be a Boulanger means there are just four hours and 20 minutes between a call for help and a sister at the door - the drive time between Heather Christian and Hope Sonney in Grants Pass and Kim White in Molalla and Bonne Anson in Vancouver.
"We are," Kim, the eldest, says, "all we've got."
Cancer had killed their grandmother and was claiming a young aunt when their mother was diagnosed with ovarian cancer at 44. By 45, the vivacious Bonne Boulanger was dead.
Heather recapped the sad history at every doctor visit only to be reassured that cancer was caused by many genes interacting with many environmental factors.
Then in 1991, Heather's small-town doctor handed her research upending that notion. Scientists at the University of California at Berkeley had in 1990 located a gene for early breast cancer. They'd studied 23 families rife with the disease - including one family from Fort Bragg, Calif., where Heather then lived. A second study confirmed the link to ovarian cancer.
The exact gene had not yet been identified, and no test yet existed, but Heather's doctor urged her to have her ovaries removed. Heather carried the news to her sisters, ages 21 to 34.
All were married, all with children. Surgery would end their childbearing and thrust them into early menopause and the roller coaster of hormone replacement. But memories of illness travel through families like wedding photos and Grandma's china, from generation to generation. The Boulanger girls recalled not only the bunk beds and Black Angus cows of their Grants Pass girlhood, but also hospital beds in the living room, black vomit, the death rattle.
One by one, each had her last baby and then a hysterectomy.
Thirteen years later, on Memorial Day weekend 2005, Kim felt a lump in her right breast. She dropped to the tub's edge and cried. "I thought," she said, "that we'd saved ourselves."
—
Every other week, Heather left her husband, four teenagers and nursery of puppies to take her sister to chemotherapy, a three-day ordeal wrapped around a 10-hour drive. "If it had been 100 hours," her husband David said, "Heather would still go."
Heather was the fixer. She covered debts, settled fights and launched the "gimme" - when a family member was guaranteed one special favor a year. She moved her dad into their home when the senior Boulanger became severely ill from diabetes.
She carried two cell phones, juggling calls about her latest Chihuahua or Pomeranian puppies, available 24/7, talking up to four hours a day. "You buy a dog, you buy a piece of Heather," her sisters would say. She had her own style, too: athletic shorts paired with the flashiest rhinestone bracelets and rings. Her personality was equally sparkly. When chemotherapy nurses limited her to five-minute visits, Heather befriended other patients so she could stay near Kim.
"There's rules," she'd say, "and then there's Boulanger rules."
Kim, who works the customer service desk at the Oregon City Fred Meyer, had already had one breast removed when her oncologist ordered a genetic test to determine the next step. Only about 10 percent of breast cancer is inherited, but for those people it greatly increased not only the risk of breast cancer at a young age but also of having it in both breasts. Kim had a simple blood test, and the sisters drove together to a Portland geneticist to hear the results.
Kim had the gene mutation. The BRCA1. The most common breast cancer gene mutation.
She wept, unable to ask a single question. With three children, she felt "like I've passed along this death sentence."
But Heather, dry-eyed, fired questions.
She learned that all the sisters and their one brother should be tested. If they had the defect, each of their children had a 50-50 chance and should be tested, too - even the boys, who had an increased risk of prostate cancer and could pass the mutation to their daughters.
But what if she didn't? Could she live with the guilt? The randomness?
One by one, Heather and her sisters were tested.
All had it.
"We're four sisters with totally different lives, eating habits, exercise habits and way of life, and it still got us," Heather said.
The Boulanger Curse.
From the moment Heather knew her results, she called her sisters to discuss having their breasts removed. Some people relied on more frequent mammograms or preventative medicine such as tamoxofen. Surgery, though, would cut their risk from 87 percent to about 5 percent. "We are going to war," Heather said. "We're going to do whatever we need to be around for one another."
She found Dr. Arpana Naik, who directs the Breast Center at Oregon Health & Science University. A surgical oncologist, Naik's entire focus was breast diseases, including women at high risk of breast cancer. Naik and her nurse coordinator, Martha McInnes (of Ask Martha fame), were, Heather said, "the first people who didn't think I was crazy."
David was not so sure. His wife of 20 years was planning a double mastectomy without ever talking to him.
"It's my body," she recalls saying.
"It affects both of us and the family as a whole," he said. "It's not like breaking your foot. I just want to be sure you're thinking clearly and not just in 'My-family-has-cancer mode.'"
The lone brother in the family, Tom Boulanger, had no plans to be tested and thought his three sisters were overreacting. "I think it's insane," he said. "I can't imagine putting myself under that to prevent something that may never happen."
The men also worried that there was peer pressure at work.
But Heather was sure. Kim's cancer returned them to their mother's final days. Heather was 44, the same age her mother had been when she was diagnosed. Bonne Boulanger "rocked as a grandma," but she didn't live long enough to know most of her grandkids. "I want to know my grandkids," Heather said.
David agreed. "We would have arrived at exactly the same place," David recalls saying. "But I just wish you had talked to me."
On Jan. 15, he left Albertsons in Grants Pass, where he is assistant store director, to drive Heather north.
She had spent her "last days with my boobs," making to-do lists for her children and having long glittery "cancer pink" fingernails applied, a rare treat not usually allowed by her work. Her children gave her a farewell card that read: "Happy Retirement to your knockers." "You are the toughest woman I know," her 19-year-old son Cody wrote.
Just after 7 a.m. on Jan. 16, Naik surgically removed the breast tissue and several lymph nodes to ensure no cancer was present. Heather would need breast exams every six months for the rest of her life because some microscopic breast cells remained. Dr. Reid Mueller, a plastic surgeon at OHSU, placed an expander under Heather's chest muscle, the first step in reconstruction.
Heather wasn't fully sold on implants, but her insurance required it be done at the time of surgery, and she didn't want regrets later.
When she woke up, David was waiting.
She peeked under her hospital gown.
"I'm so glad I did this."
—
Serina Wilson wrung out a cool washcloth and placed it over Heather's throbbing head. She had left her 3-year-old daughter in Grants Pass and come to Portland with her husband to help her aunt. She planned to return in two weeks for her mother, Hope's, surgery and again in June for aunt Bonne, a school bus driver. At 25, Serina was the next generation's fixer.
The sisters had descended into Heather's room, circling everything on the dinner menu, then calling out for pizza, too. Heather had made elaborate individualized silver charm bracelets to mark the surgeries. The sisters studied theirs: "In Memory of My Mother" and "High Maintenance."
"High maintenance? That's not me!" Bonne said. "That's Hope."
"Brat," Hope said.
The sisters were, Serina knew, "terminally unique." They carried big personalities and tiny dogs, frequently in costumes. They were closer than any family she knew. "I don't have a cell phone because the aunts would call 500 times and say, "Where are you?" she said. As a teenager, Serina and her cousins had died from embarrassment at their aunts' lack of self-consciousness. Her mother, who had nine children, would leap out of a car to stop a fistfight. She stopped an abusive parent in a grocery store by asking, "Excuse me, do you know there are parenting classes you can take?"
Hope told the surgeons, "Just make mine perkier than Heather's."
"Mother!" Serina said.
"You guys are hilarious," Naik said, laughing.
Serina wasn't laughing. The sisters' experience had convinced their brother, Tom, to be tested after all. Two cousins had already undergone testing - both negative. But Serina was still worried. Mastectomy, with the pain and change in appearance, terrified her. She wasn't done having babies. And what if Jadin, her beautiful, redheaded daughter who looked so much like these women, carried the gene?
Serina couldn't imagine fighting so hard to live. Except, she would.
The sisters had taught her how.
She was a Boulanger. With all the weakness that carried — and all the strength.
Julie Sullivan: 503-221-8068; juliesullivan@news.oregonian.com
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