It's hard to keep up with everything when I feel exhausted and can't bend over. It's physically challenging to get in and out of bed or a chair or a car or the tub (which is a huge problem, because I soak in the tub many times a day)... My energy has limitations and I have to carefully choose how I spend it. My children are my priority and everything else in my life gets whatever crumbs are left over. My laundry is becoming a mountain range and my kitchen sink is overflowing. Mark looks at the pathetic crumb in his bowl and turns into Oliver Twist, "More, please." I have so many people that have offered to help me, but I don't even know where to start. I have never felt like I needed help before. I feel a sense of disconnect from it all- like I'm going through the motions, but not really here. My spirit has taken refuge deep inside, while my body becomes a battleground. Mark feels it and desperately tries to send me lifelines that end up either annoying me or making me cry, because when he pulls me to the surface I realize how much he misses the "old Sarah." So do I.
Today, my mom and Amy came over and cleaned our house. My mom brought her Rug Doctor and cleaned the carpet. I lay on the sofa, with my bucket and Amore. When they were done, it looked beautiful in here. At one point, my mom and sister were folding laundry. My mom paused, "Sarah, you know I love you and I would do anything for you," She held up a pair of Mark's underpants, "but I may have reached a limit here." We all laughed and laughed. It was music to my soul. It filled me up and made me feel like me :)
Wednesday, September 16, 2009
Tuesday, September 15, 2009
Amore means Love
Natalie is in 4th grade and Larissa goes to preschool 3 mornings a week. I scheduled my radiation treatments in the morning before school, thinking this would be less disruptive for my family. The radiation itself only takes about 15 minutes, but it wipes me out. The pain I have in my back and hips makes it difficult for me to roll over in bed or even get out of bed. I still cannot bend over. I also have nausea and vomiting much of the time. The thought of eating makes me feel sick.
I have Zofran and Compazine for nausea. I am taking MS Contin for pain and today my dose was increased to 30mg every 12 hours, with Vicodin every 4 hours prn. I have never taken many meds and now I'm taking so many at once- it's hard to figure out what is working or isn't working. Sometimes, I feel like I could sleep all day...
Growing up, we always had dogs and cats, hamsters, guinea pigs, rabbits, parakeets, and fish. Mark always had cats. Mark loves cats, but he has asthma and is allergic to them. Whenever he holds and pets cats at his mother's house or my parent's house, he needs time to recover using his inhaler.
Just before my diagnosis, a friend of Mark's asked if we were interested in a puppy. His family has 2 Italian Greyhounds and they just had seven puppies. Mark did some research on them and called my mother to ask what she knew about them.
My mom said, "They are really interesting dogs, but I can't say I know a lot about them."
"From what I have been reading, well, they seem a lot like cats. Short hair. Don't smell. Playful and energetic. Like to cuddle."
"But they are not cats. They are dogs," she said.
"Yeah, I know, but they are very cat-like."
"You should find a way to adopt a cat."
"Not with my allergies," Mark said. "Hey, do you want a puppy?"
"No."
Mark and I took the girls to see the puppies. Mark's friend and his wife have 2 sons and a daughter, so the puppies were used to children and had been held a lot. The puppies were playful and precious. One puppy kept coming up to us. She snuggled in my lap. She chose us.
When we returned to see her a few days later, my parents came along. Mark's friend and his wife explained that they weren't planning on having puppies, but now they wanted to find good homes for these puppies, then they planned to spay/ neuter their dogs. By the time the puppies were ready to leave their mother, both my parents and Amy's family had decided to adopt a puppy, too.
My parents already have 2 dogs, Bailey- a yorkie mix- and Buddy- a golden retriever. Their sheltie, Nikita, had died a year ago and we all missed her. Amy's family has Ariel- a shitzu- and Lily- a black lab. On August 10, I wasn't feeling well, so I waited at home with Larissa while Mark and Nan went to get the puppy we had decided to name "Amore." My parents and Amy met there.
Mark started for home with Natalie holding the puppy in the backseat of his cab. Mark had visions of this dog growing up to sit in the front seat next to him- riding along together. Once the car was in motion, the puppy started to cry. Loudly.
Mark called my mother, "Something's wrong with this dog! Do you hear this? What can I do?"
"The puppy just misses her mother and family. Everything is new and strange to her. She is ok. Just relax and try to calm her."
"What? I can't hear a thing over that screeching."
"Mark. Have Nan hold her and calm her. Tell her to try singing softly."
"Natalie bailed. I am trying to get her to sit next to me on the seat."
It was a long, noisy ride with Mark questioning this decision every miserable, earsplitting mile. Then, they got home and Amore was quiet. She was interested in everything outside. We walked her around in the grass on her leash. Inside, we showed her the kennel, lined with soft blankets and new toys. We led her to her new food and water bowl and watched as she ate and drank. We ran her back outside when she started to pee on the floor. We took turns holding her as she slept...
Had I known that day, that 3 weeks later I would be diagnosed with cancer, would I have chosen to adopt a dog? Probably not, but I believe that things work out the way they are meant to be. While I lie in bed, holding my barf-bucket nearby- I can feel Amore breathing softly under the covers, stretched out along my back (taking full advantage of the warm, rosy glow of my latest hot flash). She licks my face. She jumps into the bathtub with me. She noses the cupboard under the kitchen sink until it opens, then she roots around in the wastebasket for treats. I love this sweet, little, naughty dog.
Amore (left) and her sister, Nora
I have Zofran and Compazine for nausea. I am taking MS Contin for pain and today my dose was increased to 30mg every 12 hours, with Vicodin every 4 hours prn. I have never taken many meds and now I'm taking so many at once- it's hard to figure out what is working or isn't working. Sometimes, I feel like I could sleep all day...
Growing up, we always had dogs and cats, hamsters, guinea pigs, rabbits, parakeets, and fish. Mark always had cats. Mark loves cats, but he has asthma and is allergic to them. Whenever he holds and pets cats at his mother's house or my parent's house, he needs time to recover using his inhaler.
Just before my diagnosis, a friend of Mark's asked if we were interested in a puppy. His family has 2 Italian Greyhounds and they just had seven puppies. Mark did some research on them and called my mother to ask what she knew about them.
My mom said, "They are really interesting dogs, but I can't say I know a lot about them."
"From what I have been reading, well, they seem a lot like cats. Short hair. Don't smell. Playful and energetic. Like to cuddle."
"But they are not cats. They are dogs," she said.
"Yeah, I know, but they are very cat-like."
"You should find a way to adopt a cat."
"Not with my allergies," Mark said. "Hey, do you want a puppy?"
"No."
Mark and I took the girls to see the puppies. Mark's friend and his wife have 2 sons and a daughter, so the puppies were used to children and had been held a lot. The puppies were playful and precious. One puppy kept coming up to us. She snuggled in my lap. She chose us.
When we returned to see her a few days later, my parents came along. Mark's friend and his wife explained that they weren't planning on having puppies, but now they wanted to find good homes for these puppies, then they planned to spay/ neuter their dogs. By the time the puppies were ready to leave their mother, both my parents and Amy's family had decided to adopt a puppy, too.
My parents already have 2 dogs, Bailey- a yorkie mix- and Buddy- a golden retriever. Their sheltie, Nikita, had died a year ago and we all missed her. Amy's family has Ariel- a shitzu- and Lily- a black lab. On August 10, I wasn't feeling well, so I waited at home with Larissa while Mark and Nan went to get the puppy we had decided to name "Amore." My parents and Amy met there.
Mark started for home with Natalie holding the puppy in the backseat of his cab. Mark had visions of this dog growing up to sit in the front seat next to him- riding along together. Once the car was in motion, the puppy started to cry. Loudly.
Mark called my mother, "Something's wrong with this dog! Do you hear this? What can I do?"
"The puppy just misses her mother and family. Everything is new and strange to her. She is ok. Just relax and try to calm her."
"What? I can't hear a thing over that screeching."
"Mark. Have Nan hold her and calm her. Tell her to try singing softly."
"Natalie bailed. I am trying to get her to sit next to me on the seat."
It was a long, noisy ride with Mark questioning this decision every miserable, earsplitting mile. Then, they got home and Amore was quiet. She was interested in everything outside. We walked her around in the grass on her leash. Inside, we showed her the kennel, lined with soft blankets and new toys. We led her to her new food and water bowl and watched as she ate and drank. We ran her back outside when she started to pee on the floor. We took turns holding her as she slept...
Had I known that day, that 3 weeks later I would be diagnosed with cancer, would I have chosen to adopt a dog? Probably not, but I believe that things work out the way they are meant to be. While I lie in bed, holding my barf-bucket nearby- I can feel Amore breathing softly under the covers, stretched out along my back (taking full advantage of the warm, rosy glow of my latest hot flash). She licks my face. She jumps into the bathtub with me. She noses the cupboard under the kitchen sink until it opens, then she roots around in the wastebasket for treats. I love this sweet, little, naughty dog.
Amore (left) and her sister, Nora
Wednesday, September 9, 2009
SJ Ink
I spent 1.5 hours lying on my stomach on a narrow table while the radiology staff mapped out my radiation fields. I got 5 tattoos, so each day they can just align the machine to the permanent, little dots.
In high school, I thought about getting a Winnie-the-Pooh tattoo...
In high school, I thought about getting a Winnie-the-Pooh tattoo...
Tuesday, September 8, 2009
Radiation
Met with Dr. Dickson and his nurse, Yvonne, today to discuss my bone mets. He recommends radiation to my T5 to L1 vertebrae Monday- Friday for 3 weeks. Each treatment would take about 15-20 minutes. Radiation will quickly target the cancer in my bones- relieving pain and allowing them to rebuild. Since the radiation field will be close to my GI tract, nausea and vomiting is a common side effect. Taking in my pink and purple highlights, he said "You shouldn't lose your hair."
Friday, September 4, 2009
PET scan
I started Tamoxifen.
Later, I had a PET scan. Radioactive material is injected into a peripheral IV in my arm. I have to lie very still with my arms extended over my head while it travels throughout my body. Then, into the scanning machine for scans.
Mark had made a special trip to his mother's house in Bloomington in search of something. He returned with a small cardboard box that had belonged to his dad. Inside- a geiger counter. For the rest of the day, Mark periodically followed me around the house- listening to clicks and checking readings.
It's official. I'm radioactive.
Later, I had a PET scan. Radioactive material is injected into a peripheral IV in my arm. I have to lie very still with my arms extended over my head while it travels throughout my body. Then, into the scanning machine for scans.
Mark had made a special trip to his mother's house in Bloomington in search of something. He returned with a small cardboard box that had belonged to his dad. Inside- a geiger counter. For the rest of the day, Mark periodically followed me around the house- listening to clicks and checking readings.
It's official. I'm radioactive.
Thursday, September 3, 2009
Bone scan/ Birthday/ Bonfire
Busy day. Bone scan and MRI. Then, I had my hair cut and highlighted purple and pink. A going away present of sorts.
In the evening, we celebrated Larissa's 5th birthday with a pizza party and bonfire at my parent's house. We sang and ate cake. Amy worked on showing Natalie and Coral how to make earrings. Later, I sat in a lawn chair between my dad and sister, Amy, staring into the crackling flames. Even with worried thoughts weighing on our hearts, still a peaceful place.
Tuesday, September 1, 2009
D Day
For those of you who know my husband, Mark, you know that he is not afraid of disaster. In fact, he is trained as a police officer, owns his own cab company, and runs the Command Center that coordinates emergency assistance in Ramsey
County. Stress, pressure, chaos- to me, maybe- but not to him.
This morning, Mark, my mom and I went to meet the oncologist I was referred to. This man would give me my diagnosis, my prognosis, my answers, my plan. The mistrust I felt for doctors and healthcare in general- like a stinking, leaking garbage bag filled with pain, worry, and fear- would fall right into this man's lap. Unfairly. We agreed to keep our distance and to listen to his spiel, while keeping a firm grip on the escape hatch. And so I waited, facing my own mortality, looking into my mother's teary eyes, and witnessing Mark's first panic attack.
A nurse came in to speak with us. She explained what would happen on this visit. She told me that everyone in this clinic would be affected by my cancer, because seeing someone my age was rare. Mark quickly diverted the conversation to his own breathing difficulties, heart palpatations and feelings of overwhelming anxiety. He said he couldn't sleep last night- especially after seeing the look on my mother's face after she had spent a few hours googling "Stage 4 Breast Cancer." He said, "I have been trained to read faces and gestures and, let's just say, it wasn't good." The nurse cautioned us about getting medical information from the internet and acknowledged that Mark too may need help in dealing with my diagnosis and that he should talk to his doctor.
If you know Mark, you also know about his filter. While some people claim he doesn't have one at all, it's more like he chooses to keep the setting at "Wide Open" most of the time. This leads to some moments that may be perceived from inappropriate and socially unacceptable to simply honest (sometimes, brutally honest), to lighthearted or just plain funny.
Dr. Laudi, my Oncologist.
Dr. Laudi entered the exam room, placed my file on the desk and reached for my hand. "Sarah," he said, his voice warm and soothing, "If you hear nothing else today- hear this: WE CAN TREAT THIS." He let these words sink in, then continued "Can we cure this? I don't know. But we can treat this." He took Mark's hand, then my mom's hand- not shaking, but holding.
Calm. Peaceful. Hopeful. He not only saw the baggage we had lugged to this visit, but he accepted it as a gift to be recycled into something new.
My diagnosis: Infiltrating Ductal Carcinoma
-with T9 and T12 vertebrae pressing slightly into my spine
Lymph node status: 1 node involved
Tumor size: 2.3 X 2.6 X 2.5 cm (the largest mass)
Nottingham grade: II of III
Nottingham score: 6 of 9
Mets: +
Hormone receptor status: Estrogen +
Progesterone +
Herceptin -
Dr. Laudi put the discs of my scans into his computer and started to interpret them. I had mets to every bone visible on the scan- spine, ribs, pelvic bones. These mets ate away at the bone, displacing it and making it fragile. He told us not to be concerned with the number of mets- one or one hundred- the treatment would target them all.
Mark blurted out, "Can't we just order her a new spine from China?"
Dr. Laudi derailed- momentarily speechless. "Well... probably not in the way you are thinking, but I have a plan."
Though I thought losing my breasts was a given, since the cancer had already spread beyond them, they would stay- the traitors. (Left one- I'm talking to you).
Tests:-Bone Scan
-Xray
-Brain Scan
Lab:-CA27-29 Tumor Marker [<35] = 66
Pain Control:-MS Contin BID
Hormone Therapy (to remove my cancer's food supply):
-Tamoxifen (binds to cancer cells, turning them off)
-Lupron (stops ovary function)
Meds:
-Laxatives (to counteract the narcotics)
-Calcium and Vitamin D (to help build bone)
-Zometa IV (to strengthen bone and reduce fractures)
Referrals:-Radiation (to my spine)
-Orthopedics (weight restrictions, fracture risks)
-Genetics: BRCA 1 & 2 (to see if there is a genetic component and risks to my mom, sisters, children)
No treatment is without risks or side effects. I learned that narcotics will relieve pain, but make me tired and constipated. Tamoxifen can cause weight gain and blood clots. Removing the estrogen from my body would put me into menopause with hot flashes. I already had questionable fractures, so I would have to take an indefinite leave from my job at Children's Hospital where I worked in the storeroom and as a nursing assistant. The Zometa can cause kidney problems and a rare jaw bone necrosis.
"You're scaring me here." Mark said. He went on to describe his vision of my potential transformation- flushed and sweating, bloated, necrotic- I will spare you.
Obviously, Dr. Laudi had never met anyone quite like Mark before. Have any of us, really? "He's stressed out." I said and the doctor nodded, continuing with the plan.
Riding down the elevator and stepping out into the sunny day, we all admitted that we had a good feeling about this doctor. My mom liked that he was present, hopeful, and appeared current on breast cancer care.
Mark said, "Yeah, I liked him, too. But did you notice the times he glanced down and to the right?"
County. Stress, pressure, chaos- to me, maybe- but not to him.
This morning, Mark, my mom and I went to meet the oncologist I was referred to. This man would give me my diagnosis, my prognosis, my answers, my plan. The mistrust I felt for doctors and healthcare in general- like a stinking, leaking garbage bag filled with pain, worry, and fear- would fall right into this man's lap. Unfairly. We agreed to keep our distance and to listen to his spiel, while keeping a firm grip on the escape hatch. And so I waited, facing my own mortality, looking into my mother's teary eyes, and witnessing Mark's first panic attack.
A nurse came in to speak with us. She explained what would happen on this visit. She told me that everyone in this clinic would be affected by my cancer, because seeing someone my age was rare. Mark quickly diverted the conversation to his own breathing difficulties, heart palpatations and feelings of overwhelming anxiety. He said he couldn't sleep last night- especially after seeing the look on my mother's face after she had spent a few hours googling "Stage 4 Breast Cancer." He said, "I have been trained to read faces and gestures and, let's just say, it wasn't good." The nurse cautioned us about getting medical information from the internet and acknowledged that Mark too may need help in dealing with my diagnosis and that he should talk to his doctor.
If you know Mark, you also know about his filter. While some people claim he doesn't have one at all, it's more like he chooses to keep the setting at "Wide Open" most of the time. This leads to some moments that may be perceived from inappropriate and socially unacceptable to simply honest (sometimes, brutally honest), to lighthearted or just plain funny.
Dr. Laudi, my Oncologist.
Dr. Laudi entered the exam room, placed my file on the desk and reached for my hand. "Sarah," he said, his voice warm and soothing, "If you hear nothing else today- hear this: WE CAN TREAT THIS." He let these words sink in, then continued "Can we cure this? I don't know. But we can treat this." He took Mark's hand, then my mom's hand- not shaking, but holding.
Calm. Peaceful. Hopeful. He not only saw the baggage we had lugged to this visit, but he accepted it as a gift to be recycled into something new.
My diagnosis: Infiltrating Ductal Carcinoma
-with T9 and T12 vertebrae pressing slightly into my spine
Lymph node status: 1 node involved
Tumor size: 2.3 X 2.6 X 2.5 cm (the largest mass)
Nottingham grade: II of III
Nottingham score: 6 of 9
Mets: +
Hormone receptor status: Estrogen +
Progesterone +
Herceptin -
Dr. Laudi put the discs of my scans into his computer and started to interpret them. I had mets to every bone visible on the scan- spine, ribs, pelvic bones. These mets ate away at the bone, displacing it and making it fragile. He told us not to be concerned with the number of mets- one or one hundred- the treatment would target them all.
Mark blurted out, "Can't we just order her a new spine from China?"
Dr. Laudi derailed- momentarily speechless. "Well... probably not in the way you are thinking, but I have a plan."
Though I thought losing my breasts was a given, since the cancer had already spread beyond them, they would stay- the traitors. (Left one- I'm talking to you).
Tests:-Bone Scan
-Xray
-Brain Scan
Lab:-CA27-29 Tumor Marker [<35] = 66
Pain Control:-MS Contin BID
Hormone Therapy (to remove my cancer's food supply):
-Tamoxifen (binds to cancer cells, turning them off)
-Lupron (stops ovary function)
Meds:
-Laxatives (to counteract the narcotics)
-Calcium and Vitamin D (to help build bone)
-Zometa IV (to strengthen bone and reduce fractures)
Referrals:-Radiation (to my spine)
-Orthopedics (weight restrictions, fracture risks)
-Genetics: BRCA 1 & 2 (to see if there is a genetic component and risks to my mom, sisters, children)
No treatment is without risks or side effects. I learned that narcotics will relieve pain, but make me tired and constipated. Tamoxifen can cause weight gain and blood clots. Removing the estrogen from my body would put me into menopause with hot flashes. I already had questionable fractures, so I would have to take an indefinite leave from my job at Children's Hospital where I worked in the storeroom and as a nursing assistant. The Zometa can cause kidney problems and a rare jaw bone necrosis.
"You're scaring me here." Mark said. He went on to describe his vision of my potential transformation- flushed and sweating, bloated, necrotic- I will spare you.
Obviously, Dr. Laudi had never met anyone quite like Mark before. Have any of us, really? "He's stressed out." I said and the doctor nodded, continuing with the plan.
Riding down the elevator and stepping out into the sunny day, we all admitted that we had a good feeling about this doctor. My mom liked that he was present, hopeful, and appeared current on breast cancer care.
Mark said, "Yeah, I liked him, too. But did you notice the times he glanced down and to the right?"
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