PAIN

In the 4 days since my discharge from the hospital, pain has become my constant companion. I try to keep ahead of it with my po Dilaudid. Pain never really goes away, it just slinks off into a corner and waits until my meds wear off. I am not afraid of it. I acknowledge it and face it. I just can't figure out how to coexist with it. In college, I took Integrative Med classes, so I practice the techniques I learned. Deep breathing.... relaxation.... visualization... aahhhh- Pain screams and wails and makes demands. Pain wants my undivided attention and wants it NOW! Everything else in the world becomes a white-noise static as I focus on pain.

This morning, at Dr. Laudi's office, I asked for the Fentanyl patch. The nurse's eyes got wide and she looked at Mark who was sipping on a Red Bull after working late last night.

"Yep. You heard her right. I am outnumbered." He said.

Dr. Laudi told Mark and my mom that he appreciates the great support they give me, but that I am his patient. He needs to listen to me and help me in any way he can. My mom agreed.

I was scheduled for a Lupron injection (that would shut down my ovaries, further decreasing the estrogen in my body).

Mark said, "You know, Sarah is a 28 year old woman and these drugs are essentially turning her into an 80 year old woman."

"We need to cut off the estrogen supply to these tumors." Dr. Laudi explained. As I headed to the infusion center for my injection, Dr. Laudi spoke to Mark.

My mom said, "Sarah, I don't have to come with you to your appts."

"I want you to."

"But it's important for you to develop a working relationship with your doctor and maybe I distract from the things you need to say."

I told her, "I am a lot like Dad. I just want to get in and get out. Sometimes, I need help."

Mark and Dr. Laudi were talking and laughing by the elevator.

Dr. Laudi said to my mom, "What did you say when Sarah brought this guy home?"

I jumped in, "She said 'Keep looking.'"

Dr. Laudi smiled, "Mark is a good guy."

Mark picked up my Fentanyl patches from the pharmacy. I wasn't there, but I bet that he interrogated the pharmacist. At home, he removed a patch from the package and examined it carefully for defects before I stuck it on. That night as I slept, I imagine Mark lying awake- counting my breaths and reviewing CPR.

Phoenix Taxi

My mother-in-law, Ireane, stopped in to visit me at the hospital. She gave me a beautiful angel. While she and Mark were here, my mom stopped by and Mark told her about his latest idea.

Mark owns Phoenix Taxi, which serves Anoka County here in Minnesota. His cabs are blue with a red phoenix on the the front doors- rising from the ashes (of a previous cab company actually). Mark's personal cab has fake bullet holes on it and the words 'Party like a Rockstar- we'll drive you home' on each side. Now, Mark has decided that he is going to have one of the cabs painted pink in my honor. He was trying to figure out some fun slogans for it. Since it is a cab and not a schoolbus, for example, the slogans can be a bit more risque.

"How about owls?" Mark grinned, "For hooters, you know."

"I don't know," my mom started giggling, which is both fuel and encouragement, "could be offensive to some people."

"Not my clients."

"How about," my mom started, " 'For all the mothers, daughters, sisters-"

Mark cut her off, "How about 'Save Second Base'?"

Mark, my mom and I laughed, but Ireane sat quietly.

Mark turned to his mother, "What do you think?"

"I don't know." She said, "I don't get it."

"You don't know what second base is?" Mark said.

"No," she said, "It must be funny, but I don't get it."

"Mom," Mark said, "You are such a good Catholic girl, but you had 3 kids. You know what second base is."

Then- you guessed it- Mark explained 'baseball' to his mother running through all the bases to the home run. I will spare you. If only I could have spared my mother.



                           Phoenix Taxi's Breast Cancer Cab

"Hosibul"

Apparently, I looked like crap when I went to my radiation appt yesterday, so Dr. Dickson called Dr. Laudi- who had already been getting frequent updates from Mark by phone, email, and texts (I have spoken to Mark about his incessant harassment of this poor man. Mark understands 'boundary issues' on a conceptual level, but the possibility of facing tomorrow without me... well, he is stuck in survival mode and cannot help himself). So yesterday, I was admitted to Mercy Hospital for dehydration and pain control.

I have lost 22 pounds. (NOT endorsing this weight-loss plan). I didn't realize how horrible I felt, until the IV fluids started to rehydrate me, the IV Dilaudid PCA kicked in and I actually started to feel good. I had a CT and Xrays of my pelvis, along with an MRI. I get wheeled to radiation each day.

Today, Dr. Laudi said he wonders whether the MS Contin is contributing to my nausea. He is weaning the Dilaudid PCA and is planning to have me use a Fentanyl patch along with Dilaudid and Methadone prn when I get home. It just takes time to figure out which meds will work best for me.

Mark was updating his brother, Steve, who is an attorney in Chicago and when Mark said "Fentanyl patch" Steve told him that he is working on cases where Fentanyl patches have been defective. Instead of delivering a small amount of the narcotic at a time, patients got a huge bolus resulting in death. Steve strongly advised Mark to refuse the patch. Our internet connection will be humming tonight...

My parents have been taking care of Amore. Nan and Larissa- or Pickle as we sometimes call her- have been staying at Amy's. Today, my mom brought Larissa up to the hospital to see me. My mom brought me a new fleece blanket and some flowers that Larissa had helped pick out. My mom told me that Larissa had suddenly started to cry on the way up to my room. She asked her what was wrong.

Larissa said, "On TV, people cry at hosibuls. It's sad. I don't want my mom to get all dead."

We have talked to our girls about cancer and tried to reassure them that we love them and will make sure they are cared for. It breaks my heart when I think about dying and not being here for them.

Pickle jumped into the hospital bed next to me, snuggled into the blankets, then played with the bed controls giving me quite a ride. I held her close and just went with it- luckily I didn't throw up.

I remember my mom taking our dog, Nikita, to the vet. Dr. Wall, a friendly man in his 40s, had examined Nikita observing the stiffness in her gait, the cloudiness in her eyes.

"She is an old girl." He had said.

The next year, when my mom called to make Nikita's vet appt, she was told that the vet had died unexpectantly. An aneurism. Unexpectantly, Nikita had outlived him...

So, you never really know. Cancer reminds me that all we really have is today, right now. Cancer also shows me -without a doubt- how much you care about me. When I count my blessings, I am counting you.

Sinking into the Abyss

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 :)

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

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...

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."

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.

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.

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?"