Saturday, August 1, 2015

Choosing Joy

From Sarah's mother:

A numbing fog settles over a person when someone close to you dies. This may be some sort of protective defense mechanism kicking in as we slip deeper into a survival mode abyss. There are children to care for, dogs to feed, support to be given and received, people to call, arrangements to make,... a seemingly never ending series of tasks. The world continues to spin, but we feel detached.

Stark, undeniable reality lay before us. We mourned our daughter, sister, wife, mother, aunt and friend as our hearts broke into a million pieces. Sharp, shattered pieces, so unrecognizable we feared they could never be reassembled in any meaningful way. Sarah was born naked and she died naked. My beautiful daughter. My sweet, smiley baby girl. Now, a shell of skin and bones. Her skin was yellow. I touched her hair, kissed her and tried to memorize everything I could about her. I ran my fingers along the scars from her c-section and portacath and biopsies. I touched the bruises from her taps. I baptized her with her mother's tears. Cancer is cruel, so fucking cruel. I tucked her favorite soft fleece blanket around her. Family and friends came to her bedside. All the while, Amore lay nestled in the blankets covering her mom. Cancer may have stolen Sarah's body, but it could never take the joyful spirit that had danced inside... 

Mark called a local funeral home. When a minivan/hearse arrived outside. Mark said, "Oh, no! Not a minivan! Sarah hated minivans." A man in a suit and a woman in a suit and heels came in with a stretcher to take Sarah's body away. Larissa refused to leave her mother's side. She held on tight and cried, "You can't have my mom!" We tried to comfort her, console her, but she was having none of it. Eventually, we had to tearfully and forcibly pry her off and hold her close as these two people secured Sarah's body on the gurney and navigated a treacherous flight of stairs.  

Mark shared with her sisters and me that Sarah had a private Pinterest Board called "Fun Roll". As I looked at the posts, I thought of Sarah creating this and adding to it. It contained quotes, songs, poems, stories of other people with cancer, and ideas to help children when a parent dies. One entry was the cover of a book entitled, "Being Dead is no Excuse: The Official Southern Ladies Guide To Hosting the Perfect Funeral." Just like Sarah, I thought. Making us laugh through our tears. 

Sarah had made it known she wanted to be buried in her Nick and Nora pajamas. After seeing our dog, Buddy, cremated a few years ago, she decided she didn't want that for herself. She wished to be wrapped in a blanket and returned to the earth. She liked the cemetery in Red Wing where her great-grandparents are buried. She liked the hills and bluffs. She liked the Lakeview Cemetery in Minneapolis with the beautiful monuments and park-like setting. Sarah also expressed that she would be furious if money that could be spent on her family was wasted on her funeral. I remembered reading something about the first cemetery in Minnesota to offer green burials. I found contact information and passed it on to Mark.

Mark's brother, Steve, had flown in from Chicago and his brother, Dave, offered support while navigating the funeral industry. They had just buried their mother a few months ago and the process was fresh in their minds. As we sat with the funeral home representative, I couldn't help feeling we had just stepped into an episode of "Six Feet Under." A show we had all watched and liked, because of the ways it challenged our culture's sanitized view of death and grief. Mark told this man about Sarah's wishes and was met with some disapproval and even outright refusal, because apparently Sarah's funeral represents them and their business more than it represents her. It felt like an interview process, but twisted in the wrong direction. Mark had been in touch with Tony Weber at Prairie Oaks Memorial Eco Gardens. Tony told Mark that his family went to the same church as Mark did and he had known Mark's mother. Mark called him to coordinate a burial that would work for all. 

Prairie Oaks Memorial Eco Gardens is located in Inver Grove Heights. The property used to be an old farmstead, but had been rezoned as a cemetery with several churches showing interest in the property over the years, but they were never built. Tony's son, Jon, originally bought this land to build a house for his family, but discovered he couldn't due to the zoning. He sold the property to his father and they opened the first exclusively green burial cemetery in Minnesota. 

We met at their office. Tony explained that green burial isn't really a new thing, but simply returning to the way things used to be before funerals became an industry where money could be made by exploiting vulnerable, grieving people. He spoke of the chemicals released into the earth by embalming and we learned there are non-toxic substances that are biodegrade if families want a viewing. He spoke of the way bodies are typically buried in our culture- filled with formaldehyde, hermetically sealed in caskets, enclosed in cement vaults. We are sold an illusion that our loved ones will be safe inside forever when it only takes longer for these materials to break down. Today a growing number of people are considering how our choices, how our lives and deaths impact our planet and many are seeking alternatives.   

Tony took us to a small storage room and showed us the caskets they had for sale or rent. He explained they were made of wood, cut to hold together like puzzle pieces, secured with non-toxic glue and wooden dowels. The only metal on them were small hinges to hold up the lid as these were required by law. He had other options: wicker caskets, heavy paper-cardboard boxes or cotton shrouds. There were no velvet curtained display rooms in this building, so Tony and his son pulled a casket into the lobby and opened it so we could look at it more closely. It was beautiful in its simplicity. We went back into the small storage room to look at the other options. I was standing at the back of the group in the doorway. I turned to see Olivia climbing into the casket. I quietly moved toward her as she lay inside, wiggling around and touching the soft fabric lining.

"Whatcha doin', Livi?" I asked her. 

She sat up, smiling, "It's really comfortable, Grandma." she said. 

We got back into cars and drove to the actual cemetery, still in its infancy. There were hills and oak trees and fields of wildflowers. There were butterflies and bumblebees and a nest of baby hawks calling to their parents. Someday, this will be a park with walking trails for reflection, a chapel for prayer and wild places to picnic, visit, tell stories and remember. I loved it. I thought Sarah would love it. Natalie, Larissa and Olivia chose a burial site in the middle of a field of flowers with trees on either side of the field. A plane flew overhead- Sarah loved to travel. A UPS shipping building was down the road- Sarah loved to shop and get mail. To me, it was perfect, but Mark struggled wondering if all these pieces of Sarah's wishes could possibly come together in a way that honored her spirit and her presence in our lives and in the world. 

The next day, we went to the Catholic Church of St. Paul to plan Sarah's funeral  mass. Prayers and music were thoughtfully chosen. Food ordered. I was given the job of preparing the program which I have never done before. Judy at the church  gave me the format, I wrote it and Sarah's niece, Coral, ended up getting it ready for printing. Amy and Coral downloaded songs from Sarah's "Fun Roll" Board to play at the burial. Mark went through pictures to create a slide show. Sarah's sisters and I went through photo albums to create her picture boards. 

My chubby baby smiled at me from the pages blurred by tears. I thought about all the times Sarah used to sneak up on me and snap my picture over the years. Surprise paparazzi shots. Hideous and awful. She would always laugh and tell me, "Hey, I'm going to need some pictures for your funeral board someday!" Smart ass! Had I only known... I am glad I didn't know. 

Sarah's FUNeral took place at 1:00 pm on Friday, July 18, 2015 at the Catholic Church of St. Paul in Ham Lake, MN, preceded by an hour of visitation by family and friends. Sarah wore Nick and Nora Pajamas and the wig she had worn for her driver's license picture. We were surrounded by family from near and far, friends, neighbors, people from our Children's Hospital family, along with the thoughts and prayers from all those who couldn't be there in person, but were present in spirit. We were also approached by people who had never met Sarah, but felt they knew her from reading her blog.

In the chapel of the church, Larissa hovered over her mother. 

"She never wears make-up!" Larissa said, wiping make-up off her mother's face, looking at her fingers, then wiping them on her dress, wiping lipstick from her mother's lips, looking at her fingers, then wiping them on her dress, over and over again. 

The priest led us in prayer. Then, Larissa insisted on walking next to her mother from the chapel to the church for the funeral mass.

As I followed my daughter's casket into the church for her funeral, I was grateful for the numbness that kept the full horror of the moment just beyond my reach. I was grateful for the written script I had typed and held in my hand to keep track of where I was in space and time. I was grateful for all those who gathered around us, willing to share with us our darkest of days.

Blessings. A spirit returned to a Higher Power, to God. Lifting Sarah's casket into the minivan/hearse. A traditional funeral luncheon. Mingling among people who shared with us what Sarah's life had meant to them. 

We drove to Inver Grove Heights in rush hour traffic to the burial site. A pathway had been mowed into the field of wildflowers leading to Sarah's grave on the hill. A heavy cardboard box rested on 3 boards over the 4 foot deep opening in the ground. Beside this was a large mound of dirt and three shovels. 

When everyone had arrived, the priest said a prayer. Then, the official funeral people left us to ourselves with only Tony's son, Jon, remaining. Mark removed the cover from the box. Sarah's body lay inside, her head resting on a pillow, tucked in with her blanket. Mark placed roses inside. Sarah's daughters, Sarah's sisters and nieces and nephews put in flowers, pictures, and tucked in notes beside her along with her brother's tissue paper rose. We positioned 3 ropes at the head, middle and foot of the box. We started our play list: "Baby Mine" sung by Allison Krause; "Angel" by Sarah Mclaughlin; "Somewhere Over the Rainbow/ It's a Wonderful World" sung by Israel Kamakawiwo'ole; and "When You Say Nothing at All" sung by Allison Krause. We had only prepared 4 songs. We played them on a loop. We had never done this before. We lifted the ropes and the boards were slid out and we slowly, carefully lowered Sarah's body into the ground...

All the tears that had been numbed into submission or held back by a fragile ripple separating our hearts from this world now rushed forward. The force was staggering and we could do nothing but surrender to it. Crying, holding each other, snot running onto our funeral clothes. Mark took a shovel and carefully put in the first shovelful of dirt. Horrified that dirt would land on his daughter's face, her dad removed his shirt and leaned into the grave covering her. I reached into the dirt, squeezing it in my hands and sprinkled it gently over my daughter. Amy took a shovel. Ashley kicked off her shoes and grabbed a shovel. The children wandered and picked colorful bouquets of wildflowers and put them in the grave. The sun scorched and burned down on us. Sarah's nephew, Phoenix, was sobbing and stumbling. He was encouraged to cry all his tears and to grab some more dirt and put it in. Lost in thought, Lon passed a shovel to someone else and sat at the edge with one foot in our daughter's grave. Jon generously brought us water and gatorade, because we didn't plan for this very well. He told us that some people want to just put in the first shovelfuls, some don't want to at all. There is no right way or wrong way to do it. We took turns. We shared shovels and used our hands and we buried Sarah. Literally.  

Ashley packed in the dirt with her bare feet. More wildflowers and stones were gathered and placed on the grave. Some people took a flower or a stone with them, to remember... The grave was filled. Sarah's body was returned to the earth. Soon the edges would blur. Nature would reclaim and recycle all that is hers. Now, Sarah is part of it all. We see her in the flowers and butterflies and in the blue, summer sky. We feel her in a cool breeze through the trees or when looking up into a starry, starry night. We hear her in the songs of the birds and the falling of the rain...  

We had taken Sarah's wishes, a hole in the ground, a pile of dirt, years of memories, the laughter and love we had shared with Sarah, all the anger, helplessness and sorrow we felt as we watched her die and we gave them all a voice. We suffered. We were sweaty, thirsty, dirty, physically exhausted, emotionally spent and yet... we felt blessed, touched by something so profound, something so REAL. This realness seeped into my body, my heart and soul and has taken root deep inside me. John, Ashley's partner, perfectly described this shared experience as "tragically beautiful"... Yes. Tragically Beautiful it is.  

Thank you, Sarah Joy, for sharing with us your most precious gifts 
and for trusting us to find our way.

Now, each of us must face the work of our grief. We can reach out to those grieving, but grieving at its heart is a personal and solitary process. Wisdom is all around us. It whispers through the trees. It calls from unbeaten paths. It dances in the rain. There are people who have walked with grief, who generously share their insight, however, the most loving and supportive of people in our lives- or the snuggliest of animals- cannot do it for us. There is really no way to outrun it, wiggle around it or project it outward. The only way through it- is through it. A broken heart is an open heart. To sit in the still presence of grief is to pause, to honor love, to care for oneself, to be changed, to be revealed. It's metamorphosis with the faith of a caterpillar. It is to accept grief as our teacher, as Sarah accepted cancer as her teacher. In this spirit, we will find our way- not backtracking to the me we once were, but reaching for and growing toward the light of the me we are becoming...

To all who have shared Sarah's life and journey. From her FUNeral program:

Sarah's family is grateful for all your love and support. 
As we struggle in a world so empty without her, 
we hope to honor her life by living her inspiration...
May we have faith and feel our connection to all. 
May we stand up for ourselves and for each other. 
May we see our trials as teachers. 
May we explore and have adventures. 
May we make time to play with children and pet dogs.
May we never make a purchase without a coupon. 
May we bring the fun with us. 
May we be both fierce and gentle.
May we be brave enough to shine light into darkness. 
May we love and love until love is all we have left.
May we remember to Choose JOY!

Friday, July 31, 2015

Sarah's last days

From Sarah's mother:

Six years ago, Sarah was diagnosed with metastatic breast cancer. Sarah's story is written in this blog. I have always thought of it as a love story from her to us, especially to her children whom she knew would continue their lives without her. 

Sarah asked me to write the ending. I wish I had a plot twist or a happily ever after, but if I learned anything from Sarah, it's not the ending that is most important, but how we fill the pages of our lives...  

The last weeks of Sarah's life she was in liver failure. Her skin and sclera were increasingly jaundiced. She had nausea, vomiting and itchy skin. She had ascites in her abdomen. Still, her suitcase was packed for Paris and travel guides checked out from the library sat on her bedside table. 

In those last weeks, Sarah reached out to people. She went strawberry picking with her family and father. She mended relationships with old friends. She and Mark wrote a letter and she got permission to have a contact visit with her mentally ill brother who has spent the past 10 months in jail. Sarah told me most of the jail staff were respectful to her and had not lost their humanity to a very challenging job. One guard, however, gave Sarah a hard time, asking her why she wanted to see her brother now. She told the guard she couldn't visit during their regularly scheduled visiting hours, because she was working. She told him she is dying. For 20 minutes, Sarah and Nick were able to talk, hug each other and hold hands. He gave her a letter and two poems he had written for her and a rose he made her out of tissue paper...  

Mark asked me to call Sarah's sister, Ashley, in California to tell her she should come back to Minnesota now if she wants to see Sarah. On July 5th, Ashley and her 16 month old daughter, Maya, arrived. We picked them up at the airport, picked up pizza at Pizza Luce and stopped to see Sarah who had been discharged from the hospital the day before. Sarah was very sleepy and uncomfortable.

On July 6, Sarah went back into the hospital for IV fluids and IV meds for nausea and pain. She had scans that revealed a small metastasis in her brain. She insisted on going home the next day, because Natalie's Soccer team was playing tournament games. Natalie, her team goalie, dedicated the game to her mom and they won!

July 8, 2015 was Olivia's 5th Birthday. This day was one of the milestones Sarah had hoped to reach. One of Olivia's gifts was a doll named "Joy" from the movie "Inside Out." Mark and Sarah had seen the movie which showed how experiencing sadness could be a healing and transforming process. The Joy doll came with a small clear ball called a Memory Orb that can hold a picture of a memory. Mark planned on inserting a picture of Olivia and her mom. We had a party at their house, then headed to the Blaine Soccer Fields where Natalie and her team won their last game. Sarah was too weak to get out of the car, so Mark parked the car on the grass, so Sarah could watch. Then, they went for ice cream like they always did. 

On Thursday, July 9th, we went up to the outlet mall. I bought Sarah a raincoat for her Paris trip. Amy and Sarah picked out a gift for their coworker, Soloman, and his wife's new baby. That evening, Sarah spent time visiting with her sisters, nieces and nephews.

On Friday, July 10, Sarah went to Mercy hospital Short Stay and had another tap. Doctors pulled nearly 3 liters of fluid out of her abdomen. (She sneaked a picture of the bottles and texted it to us.) Once she could breathe easier, she wanted to go home. I picked her up and brought her to our house, so she could visit with her sister and niece. Ashley and Amy had hoped to spend the evening with Sarah, but Mark and the girls came and Mark asked Sarah if she needed anything at Target and off they went. We laughed, because we can't compete with Target! 

Sarah had planned on going to Hallmark on Saturday. She told Mark she wanted to buy cards for the girls for future special days in their lives. She wanted to fill them out now, then asked Mark to make sure they were delivered at the right times. Their family had been invited to take a ride on Mark's brother, Dave, and his wife, Christy's, pontoon boat, but Sarah wanted to buy cards. Mark encouraged Sarah to have fun and to keep on having adventures, but Sarah didn't feel up to a boat ride. She said she had taken lasix and told Mark she did not want to pee in a coffee can, in a port-a-potty, or in the lake. She told Mark to take the girls and go, so he did.

Meanwhile, we decided to test our shopping theory. Ashley texted Sarah, "Thrift stores?"

"Sure," Sarah texted back, "Sounds fun!! Mark is being an ass." 

Ashley told her their dad would borrow a wheelchair from the library where he works and Amy would drive us in her minivan. It was Saturday. It was hot. We had Maya and Amy's baby, Nodin, along. Sarah's favorite thrift store is the Salvation Army in Minneapolis. There is no elevator, so we helped her walk down the flight of stairs to the lower level, carrying the wheelchair. I pushed her around the store, amazed at the spread sheet she always carried around in her head. She was always shopping a season or two ahead and knew all the kids sizes and what they needed. She walked slowly back up to the upper level as an employee carried the wheelchair. Personally, that was enough for me, but Sarah wanted to go to another thrift store in St. Paul. She said, "It has a wheelchair ramp and a button to push to open the door." Sarah had a wonderful time bossing us around, digging through the bins looking for treasures, throwing shirts and pants to her sisters to see if they would work for their kids. Thrift store shopping was truly one of Sarah's favorite things to do and she had a gift for it. 

Sarah suggested a vegan soft-serve ice cream place that Ashley might like, but they weren't serving vegan soft-serve that day, so she suggested we go to Red Robin for veggie burgers and onion rings. 

Red Robin's parking lot was packed with people waiting both inside and spilling out onto the sidewalk. None of us really wanted to deal with that, except Sarah, so we put our names on the list. Sarah and I went inside to wait, while Amy and Ashley waited in the car with their babies. I actually tried to talk her into going somewhere else, because it was so busy and noisy, but she wanted to stay. 

Once we were seated and got our food, Sarah cut up an onion ring and cut a small piece off her veggie burger and moved it around her plate without eating any of it. She started dozing off at times. As we left, I held her arm and when we reached the handicap parking sign she stopped and leaned on it, unable to go any further. Amy and Ashley went to buckle in their babies in Amy's van and pick us up. Sarah was dozing off, so I helped her over to a bench to sit down while she caught her breath. 

"How am I ever going to go to Paris, Mom?" she asked me. 

I rubbed her back, feeling every single bone poking through her skin. "Whatever happens... It's ok, Sarah," I told her. Truth was... I didn't really want her to go. I didn't want to say goodbye to her as she got on a plane to a destination I had never been to and didn't understand her love for. I didn't want her to die there... so far away... so far away from me... but it was not about me. I held her hand as tears dripped onto my shirt.

When we got back to our house, Sarah had wanted to sit in our screened porch and listen to the birds. She looked up at the stairs and turned into the TV room instead. She sat in a recliner. We covered her with a blanket and she fell into a deep sleep. 

Sarah was still asleep when Mark and the girls came to get her. Sarah was so weak and tired, her sisters feared moving her. I asked Sarah, "What do you want to do? Where do you want to be?"

She whispered, "At home. In my bed." Slowly, we helped her to the car. She seemed dreamy and half asleep. As her dad helped her inside the car she said, "I don't want to step on the turtle." There was no turtle... at least not one we could see.

On the way home, Sarah told Mark about our day together. He was grateful that she got to have a thrift store shopping day. When they got home, they waited in the car, gathering energy to climb the long flight of stairs to their bedroom. Mark told Sarah if she wanted to get upstairs to bed, she would have to keep moving and not stop. He and the girls coached her up the stairs and tucked her into bed. 

Mark didn't sleep that night. He checked her blood pressure and portable pulse oximetry. He put on her nasal cannula and turned on the oxygen. Throughout the night, Sarah was restless and uncomfortable. She kept calling out and trying to get out of bed. She was confused and disoriented. She asked Mark who was going to help her get downstairs to go out to dinner. 

In the morning, Mark called Dr. Laudi and spoke to Sharalyn, who was the very first nurse we had met 6 years ago when we went to Dr. Laudi's office. Mark asked if he should bring Sarah to the hospital. They discussed what that would mean to Sarah in terms of pain and suffering and decided not to. Dr. Laudi called to check on Sarah and determined she was in full liver failure. She had only peed twice since she took the lasix the day before and the last time there was blood in her urine. Dr. Laudi ordered a Hospice Nurse to come and though he had spoken to Sarah about this weeks ago, now she couldn't refuse. Dr. Laudi said it was time to call their priest. Sarah had her fentanyl patches on and we gave her oral morphine for pain.

We all gathered around Sarah. We moved chairs to her bedside. We took turns carefully climbing in bed beside her, sitting next to her, holding her hand, caressing her arms and hair. We cried. We told stories. We laughed. Amy and Ashley nursed their babies. A priest arrived and baptized Sarah and gave her last rites. A storm raged outside. Mark reminded us of the stormy night he and Sarah had first met and how she had braved that storm with him... how they had braved many storms together. Mark tried to sleep while we reassured Sarah that we were with her and she was not alone. We put the nasal cannula on and flipped the switch to the oxygen machine at her bedside to keep her comfortable. I told her I love her so much.

Without opening her eyes, she whispered, "I love you."

All through the night, she was never alone. Mark was exhausted and slept next to her. Ashley and I took turns napping while Amy stayed up through the night. I encouraged Amy to take a turn and sleep. She said, "When we were Nursing Assistants, Sarah always wanted everyone to get good care. She couldn't stand it if someone was lonely or confused or frightened or in pain... Sarah stood up for people. She did whatever it took. She was always fearless... I just want to give that kind of care to her." 

Sarah's dad ran home to take care of dogs and bring Amore back from her sleepover at our house. He stopped and brought us bagels for breakfast. Amore was tired from playing with her doggy sisters, so she jumped up on the bed and gently snuggled in next to Sarah. The day before, any sudden movement made Sarah cry out in pain, we moved slowly and carefully when we lay next to her, but now she slept quietly. Her father held her hand and kissed her. 

The day unfolded in bits and pieces. Random. Disconnected. I felt caught in a riptide, being pulled out to sea, helpless to steer or change direction. Is this what it feels like to die, I wondered? Is this too what it feels like to be born? So deeply, intimately connected- a mother and a child. I put my arm around her and closed my eyes. I saw my baby, my smiley little girl,... my heart wandered through years of memories. I remembered when Sarah was diagnosed with breast cancer. I had burst into tears and told her, "You can't die!"... this struck me now as a selfish demand... even for a mother to make. She had come into this world through me, but she was not mine. It was time to take those words back, time to give her back...  

I lay next to Sarah and touched her face, her hair, "I know you are dying," I said, "and it's ok to die." I told her, "This is so hard for all of us, because we are resisting what is, because we will miss you forever and ever..." Then, I took a leap of faith and assured her that we would be ok. Her sisters and I each told her that Mark, Natalie, Larissa, Olivia and Amore would be ok. We would take care of each other. We told her we loved her and it hurt so much, but whenever she was ready it was ok. She could just let go...

Mark answered the front door and led the hospice nurses to Sarah's bedside. He introduced us, saying, "Sarah likes hanging out with me and all, but whenever she feels like she really needs someone she always asks for her mom and her sisters. These are her people." The hospice nurses assessed Sarah and explained their supportive role. With kindness and respect, they offered anticipatory guidance and ordered meds to help us keep Sarah comfortable. 

Throughout the day, people came to Sarah's bedside to lie next to her, to hold her, to tell her they love her. 

We shared memories. We comforted children. 

I helped Larissa start a needlepoint project that Sarah had planned to work on with her. 

Sarah's meds were delivered. 

Another hospice nurse came to check on Sarah and help draw up meds. Olivia helped by handing the nurse the oral syringes for her to fill.

As I carried the syringes upstairs, Olivia said, "Now this medicine will make Mom all better."  

I said, "Olivia, this medicine will help your mom so she doesn't hurt, but she won't get all better. Her body is dying."

Sarah got a dose of Morphine and a dose of Ativan. 

She relaxed and fell asleep with Amore snuggled next to her. 

Within an hour, her breathing changed.

At 4:23 pm, Sarah took her last breath. 

Saturday, July 4, 2015

Let Freedom Ring!

I woke up with nausea and shortness of breath this morning. Since my last hemoglobin= 7.9, Dr. Laudi ordered a unit of blood. When Mark and I got to the hospital, I walked from the handicapped parking spaces to a bench outside the Emergency Room at Mercy Hospital. I couldn't go any further. It was hard to breathe. 

Mark got a wheelchair and brought me into the Short Stay Unit. Nurses got my blood started, then Mark ran home to care for the kids and dog. I told him I should be done around 3:30pm and he would pick me up then. 

Dr. Laudi was the Oncologist on-call this weekend. He checked my labs and said my calcium level was too high. He convinced me to be admitted to the hospital overnight for IV fluids and a pamidronate infusion. They tapped my abdomen again and got 1.4 liters of fluid. 

My mom and dad just visited and brought me some treats and a Dairy Queen Blizzard that I ended up spilling on my soft blanket I had brought with me from home. They took it home to wash and my dad will bring it back when it's done. 

Mark took the girls swimming today at the home of very dear friend and his family. I am dozing at the hospital after I convinced my mom I don't need her to stay the night. Mark will stop by later. For now, I will rest, because in the morning, I am blowing this pop stand!

Thursday, July 2, 2015

Tap and New Drug

My liver is failing.

People tell me I look jaundiced. I tell my sister in California I look tan. 

I have ascites in my abdomen.

I turned in my paperwork at work for a Medical Leave of Absence. 

Last night, Olivia crashed her scooter. I cleaned skinned knees, put on bandaids, gave magic mama kisses and a popsicle. 

This morning, I was NPO at 9:00am. Mark and I went to the hospital at 11:45 for a procedure at 1:30pm to tap fluid from my abdomen. They expected to get 200-300ml of fluid. They got 1000ml. My liver labs are off the charts, the highest Dr. Laudi has ever seen in someone still walking around and smiling. 

I started a new drug (can't remember the name at the moment) that creates antibodies against the cancer cells. It's very expensive. It is given IV. I am also trying to obtain cannibas oil, the new wonder drug. These things could slow the cancer down, maybe give me more time, but all we really have is now. 

For now, I feel exhausted and irritated and just want to wrap myself in prayers and sleep off all the drugs I got today...

Tuesday, June 23, 2015

The City Museum in St. Louis

At The City Museum in St. Louis,
 Artist Bob Cassilly created a wonderful, artistic, architectural playground
 out of found, donated and recycled objects!
 Here are pictures of us roadtripping through Chicago to St Louis
 to see this amazing place! 

We highly recommend it!

We also stopped at the arch.
We took a walk around St Louis Zoo. We found dole whip not the same as Hawaii.

Quick stop to see the Budweiser Horses.

Thursday, June 18, 2015

The crushing truth

Yesterday, I had an ECHO and labs drawn. This morning, I had a PET scan. This afternoon, Mark, my mom and I met with Dr. Laudi. 

Just one week ago, we sat here in this exam room and Dr. Laudi told us to go ahead and book the trip to Paris. Today, when Dr. Laudi and Lacey, our nurse, came into the room to discuss my test results, their eyes were glistening with tears. In one week, my life went from anticipating a beautiful trip with my family to the crushing reality of Cancer.

My liver is failing. The drug I have been taking for the past three months has done nothing. I now have tumor growth in every bone. The right side of my liver, where the beads were placed, looks clear and healing. The left side of my liver- 2/3 of my total liver- is now tumor. Dr. Laudi feels it is too risky to do the beads on the left side. He feels any additional chemo would be too hard on my liver and would shorten the time I have left. 

I feel my life flash through my heart, not looking back, but forward to all the things I will miss with my kids. Would I make it to Olivia's 5th Birthday? Her first day of kindergarten? Would I spend time with Larissa, sitting in the sunshine, talking about the books she is reading this summer? Would I see her start 5th grade or Natalie start 10th grade? Would I be there to watch Natalie's soccer games this Fall? How can this be it for me? I have so much more I want to teach our girls, so many things I want to show them. Dr. Laudi tearfully looks at me in silence. Lacey pulls a paper towel from the dispenser and wipes her eyes. My mom rubs my back. We wipe our tears on soft Kleenex I brought with me in my bag. Mark is focused on his phone, googling and googling, always trying to save me. My hero. Mark's eyes are dry.

Dr Laudi said he would not advise me to take the Paris trip. 

Mark said, "Why not?" 

Dr. Laudi chose his words carefully, "Sarah would not survive it." 

Meaning I would die there. Meaning there would be international hassles. Well fuck that! As long as I feel ok, we are going! Fuck Cancer! Cancer doesn't fight fair! 

Mark looked up from his phone. He told us he had no more tears left after crying so much yesterday and he had to pre-medicate with Ativan prior to this visit just to get through it. Then, Mark reminded us of our very first visit with Dr. Laudi when he, my mom and I had been filled with so much anxiety and dread like that visit was going to be this visit. That was six years ago. Six years! I got six years and a baby girl and many beautiful memories with my family and friends. 

As we have navigated this winding path leading to this day, we feel forever wrapped in your prayers, hope and love. You knew the destination, were aware of the suffering ahead, and still ... you chose to walk with us, crawl with us, even carry us at times. For you, I am grateful. 

I always knew this day was coming, but now that it is here... I am not ready to give up...  

Wednesday, June 10, 2015

Monday, May 18, 2015

Breathing in Loving Support

Today, when doing my usual stuff I felt short of breath. Mark called the clinic and when we got there, my oxygen saturations were 87%. I was put on oxygen and a home oxygen delivery was ordered and en route to my house. Since, my hemoglobin was 8.7 the last time I had labs drawn, I was told to go to Mercy Hospital's Short Stay Unit and get some packed red blood cells. Mark had to get back to work and I had to run home first, because we have kids and a dog...

My mom worked the overnight shift at Children's Hospital last night, but Mark had been keeping her updated, so she was awake. She picked me up at home and went with me to the hospital to keep me company. Since my portacath was not accessed and apparently Short Stay Nurses don't access ports here, my nurse had to call the Vascular Access Nurse to do it. My mom offered to do it, but they refused, citing their hospital policies. We waited. The Vascular Access Nurse arrived and accessed my port. I asked about drawing a crossmatch, since I have learned they also have policies about using clinic-drawn blood for crossmatches. Once this was done, we waited for the blood to arrive and infuse over a couple hours. We talked, looked up fun stuff on Pinterest and watched Ellen. They must have been busy in Short Stay or short-staffed. My mom ended up violating some of their hospital policies by silencing my pump and switching my empty blood bag over to normal saline at the end of my transfusion. She could have heparinized and deaccessed my port, but we had to wait for an Vascular Access Nurse to come back and do it. Seriously! 

Leaving Short Stay, my mom commented that I had a definite bounce in my step after getting blood. I could feel it. Energy. My mom is always kind of disoriented after working her night shifts and she asked me what day it is.

"It's Monday." I said.

"I wonder if Donna is here? Doing her grief support group?" Donna is a nurse who worked with us at Children's Hospital until she retired a couple years ago. She continues to share her many gifts with many, many people, as she encourages them to explore their feelings and talk about hard things... like death. She believes growth, meaning and light can be found in our darkest of days. She also knows the healing power of laughter and hugs. Donna moves through this world embodying love, compassion and JOY! I am grateful to know her. 

"Let's find out." I said.

"No," my mom started, "I don't want to interrupt her."

"Let's just look. I know where some meeting rooms are."

We went down the elevator to the basement level. We peered into the meeting rooms, but they were all empty. 

When we returned to the main level, I asked the woman at the Information Desk and she pointed down the hall and sent us in the right direction. 

"Sarah," my mom said, "I don't want us to make a spectacle of ourselves at a grief support group."

"Let's just look." I said, heading down the hall to a room where people were just getting settled into chairs with some still standing in the doorway. A man asked if he could help us. We told him we were looking for Donna, who facilitates one of the support groups.

"Oh, I know where she is. I can take you there." 

My mom gave me that mom look. "No," I said, "we can find it, if you just tell us where to go." 

"It's no problem." He starts leading us to an elevator. He added sympathetically, "This must be your first time at group."

"No, we are not here for the group." my mom said, looking horrified, "We work with Donna and happened to be here, so we just wanted to say hi, but if everyone has already broken into small groups we don't want to disturb her."

"It's really no problem." He assured us, so off we went.

When we got to the second floor, we could see Donna's back turned to us as she sat among a group of people in front of a large window overlooking nature and trees. Seeing the gentle sway of the leaves against the evening sky, I understood why she had chosen this spot. We stayed back, while he went forward and tapped Donna on the shoulder and whispered into her ear. Suddenly, she sprang to her feet, turned to face us, threw her arms into the air and made a sound I can only imagine people must make when they win the lottery! She turned briefly and excused herself from her group, then rushed over to us laughing, her arms open wide for hugs!

We told her how we happened to be at the hospital on a Monday evening and how we were delivered to her group.

"Donna, I am so sorry," my mom said laughing. 

"For what? This is awesome! You made my day!" After another round or two of hugs, Donna leaned in close and said, "I love it! Only you two would be brave enough to crash a grief support group!"

Friday, May 15, 2015


On Monday, I had the beading procedure done. Since then, I have had a lot of pain. These tumors are not going quietly. 

After giving these beads a chance to work and giving my liver some time to heal, I get to do this all over again.

Thursday, May 14, 2015


You may notice that I have a tendency to speak of myself using the word "we". We have breast cancer. We have tests, radiation, get chemo, feel sadness, loss, hope, love, JOY and gratitude. In the face of all that Cancer is, we live, we cry, we laugh. I think of my life in terms of we, because of you...

From the beginning, you jumped on this path with me. You held me in your thoughts, held me in your prayers. You have given me your time, your money, you have cleaned our house, cared for our children and dog, you have organized fundraisers, you have wrapped me in prayer shawls,... and helped me continue to live my life true to me. 

I am blessed to have you in my life. I am grateful beyond measure. Thank you...

Friday, May 1, 2015

Angiograms- mapping my Liver

Today, I went in for an angiogram, which is a test that uses Xrays, dye and fluoroscopy to take pictures of the blood flow through veins and arteries. Using this information, the doctors will map of the blood vessels in my liver. They will know which blood vessels go to the tumors and will block those coming from the tumors. The radioactive beads will be inserted into the tumors where they cannot get out and travel to other places in my body. They will work on the tumors from the inside. 

This procedure typically takes a couple hours and though I was given meds to help me relax, they need me to be awake enough to respond to questions and report what I am feeling. The hours ticked by. The doctors doing the mapping were getting frustrated. Apparently I have very complex vascular anatomy. Most people have 2 main vessels on each side of the liver, I have 4. Also, my blood pressure which normally runs low was trending even lower, so they ended up giving me 4 liters worth of boluses during the procedure. I had to pee! The doctors had the catheters in place and I couldn't be moved. I was told to 'just pee.' Well, I haven't peed my pants since I was a small child. I waited as long as I could with tears streaming down my face. When I could hold it no longer, I just peed and cried some more. My procedure started at 8:30am and I didn't end until around 3pm. Ugh! 

Next week I get to have another angiogram to ensure that the blood flow from the tumors is blocked. Hopefully, it will be easier than this was today!

Sunday, April 26, 2015

The Angel Foundation Art Show- with Natalie

Our little Olivia was born to a mother with breast cancer. She has never known me without cancer. For these past six years, Natalie and Larissa have lived with a mom with cancer. They have feared my death, seen me in pain, experienced the me on hormone therapy and prednisone which is not pretty, but is the only me I've got sometimes. There are a million things I hoped to teach them, milestones in their lives I looked forward to sharing. They have felt the rush of trying to fit a lifetime into today with a mother and a father who hope to balance cancer with memories of time spent together... still, life goes on and laundry needs to be folded, dinner made, dishes washed, stories read...

Our family has been blessed by some Angels in Minnesota, a group of people who understand that life does go on and who want to help. The Angel Foundation assists families who have a parent with cancer in financial ways by giving families grants for non-medical bills, rent, food and gas. These are basic things often overlooked or juggled with medical expenses. The Angel Foundation blesses families with love and support, especially to the children of parents with cancer. We have participated in The Angel Foundation Family Days, Summer Camps for kids and the Teen Outreach Program. My children are encouraged to explore their feelings and talk openly about cancer. They have laughed and cried with new friends and learned they are not alone. Even something as horrifying and feared as cancer can be looked at, questioned and reframed when in the safe arms of an Angel. 

Natalie participated in the Winter Photo Project "What Cancer Means to Me." The 12 teens worked with a local photographer (who had cancer himself as a teen). He worked with them, listened to their stories and taught them how to show what cancer means to them in one photo. This afternoon, The Angel Foundation hosted a Photo Exhibit of all the photos and as I walked among them, I was struck by the honesty and wisdom of these young people. 

Natalie's photo shows her with a piece of tape over her mouth. There is a smile drawn on the tape. Arms are coming at her from many angles around her, holding signs with questions written on them.

Her caption:
They just want to see a smile!
Natalie Landis
Age 14
My mom has has stage four metastatic breast cancer since 2009. I am a soccer goalkeeper. I can eat a whole pizza. I have gone cliff jumping.

When you have a parent with cancer and someone asks how you are, you might want to cry but you know it is best to have a smile on your face rather than tears. In my own experience with cancer I have noticed that you can't just tell anyone the truth about what is going on at home because they will not understand.If you are not going through the experience with or with someone close to you with cancer don't just ask about the cancer patient also ask about the people related to the cancer patient because the perspective is different than theirs.

Wednesday, April 22, 2015


Step one: Here we go. 

Olivia came down with the stomach flu last night, so our plan changed a bit.  Mark dropped me off at the hospital with my mom planning to meet me there and later give me a ride home. 

We wait. I look around. At the hospital where I work, we have transport carts and wheelchairs to move patients to and from procedures. It strikes me as funny that here at Mercy Hospital you go most everywhere in your bed. We wait some more. I sign a few consent forms without really reading them. Same stuff, different day. I bring my camera, so I can take a picture, but instead I get a big speech on why I can't take a photo of the tumor. MY tumor, mind you, though I would be happy not to claim it. 

My mother is sequestered to another room with a stack of magazines. As my bed is pushed and pulled into the room, my heart sinks. This is the very same room I was wheeled into over 6 years ago. The same room where an ultrasound confirmed that I was pregnant. The same small animal chair in the corner that Larissa had sat in. The same mobile of colorful birds on the ceiling, gently circling above me. I feel myself transported to that day. The doctor and ultrasound tech measure the baby. We listen to her heartbeat. They happily take a picture of the image on the screen that day and put it in my hand. I struggle to look at it, slipping on that slippery slope that promises life is easier, love is easier, loss is easier somehow if hearts are protected from all things unknown. Empty promises. Outright lies. 

Today, they numb my skin. The ultrasound goo is farted onto my abdomen, the  transducer slides around while the doctor and the ultrasound tech discuss the best path to the largest tumor in the right lobe of my liver. A frighteningly long needle punctures my skin between my ribs and a sample is collected. Quickly, this part is done.

Two transport aides- either on an very tight schedule or on a mission- race me back up to my room where we wait to get the ok to go home.

Results: The liver tumor is ER+, PR-, HER-. My previous biopsies were all ER+, PR+, and HER-, so these tumor cells have changed/ mutated. Dr. Laudi does not change my current treatment.

Thursday, April 16, 2015

Catching up

I know this post is dated for April 16, 2015, but today is actually June 29,2015. These past months have been busy and exhausting- both physically and emotionally. I have been more focused on living than writing about living. I have needed to just sit with some recent developments as I process them inside myself. Please refer to the blog post dates- which is the actual date the posted things occurred- while I try to catch up...  

Wednesday, April 8, 2015

Two Bottles Down- Ibrance (Palbociclib)

We finished the second bottle of the Ibrance. We did a CAT scan to mainly to look at the liver. Dr Laudi said the bone mets are stable, but the liver tumors are bigger. There are also 100+ small to medium size tumors in the lungs. I'm not sure if they get to a certain number and stop counting. Dr Laudi talked about things we could do for the liver tumors.  I asked to do a biopsy of the liver tumors because they are not responding to treatment. I know Cancer is smart and changes over time. Here is a look at my liver:

Left is April. Middle is February. Right is November. 
The largest tumor is on the top left of the liver. 

We talked about an internal radiation treatment, freezing the tumors and radioembolization. Dr Laudi felt the radioembolization would be best choice, because tiny radioactive beads are placed within the tumors targeting the tumor cells meaning better results.

We talked to the surgeon that would perform the radioembolization. We discussed the good the bad and the ugly. The good: if successful, it could buy me 6 to 11 months. The bad: only 11 months or less or none, if not successful. The ugly: multiple surgical procedures before beads are placed and only one lobe of the liver can be done at a time. 

1. Biopsy of the liver tumors.
2. Angiogram of liver to map the blood vessels and tumor blood supplies.
3. Place the beads.
4. CT scan to see if it's working.
5. Repeat on left lobe of the liver.

If all goes well, I may be given more time. It may seem like a lot to go through for a small gain, but I remind myself that every chemo or new drug I have tried has allowed me to live with Stage IV Breast Cancer for nearly 6 years! 

Six months... I would see Mark turn 37, Olivia turn 5 and start Kindergarten, Natalie start 10th grade, Larissa turn 11 and start 5th grade. We could take the Paris trip that has been on hold. There would be sunny days at beach, drippy ice cream, camping, fishing, teaching Natalie to drive, Natalie starting another soccer season... I will fill those months with laughter and memories and JOY. I will give my time to all of the above. I will deal with frustration and pain... if only to have one more summer...

Friday, March 20, 2015


Sharing glimpses of my Dream...

Waikiki beach

Enjoying the beach,
 making sand castles,
 and daydreaming.

Making new friends

Beautiful days!
So grateful for this time together!

Thank You, Ally's Wish!
This trip was so much more than we could have
ever dreamed of!

Sand between my toes. Footprints on the beach. Bittersweet paths we walk. Mark looks behind him... wishing he could share this experience and his photos with his mom. I look ahead... to a beach where my prints will be forever washed away with the tide... but for today... a gift...

Today, I hold the hands of those I love and feel the the Earth breathing as the waters rush in, then out. I stand in silence and let the sunset paint brilliant colors on my soul. I splash and play in the ocean with my girls, knowing this may be the very last time... also, knowing the most precious moment we have in life- the only moment that really matters- is the one we are living right now! So grateful for now!

Wednesday, March 18, 2015

Ally's Wish

From the website
"Ally’s Wish
was founded to grant the wishes of moms
 suffering with terminal illness.
Our hope is to create a pause
in the pain and hardship
and provide lasting and joyful memories."

My husband surprised me by nominating me for a wish. Mark wrote:

Please tell us about the diagnosis and history of the mom’s illness:

"Sarah was diagnosed with stage 4 breast cancer in Sept 2009. She had been having back pain so bad she knew something was wrong. She had 5 visits to the doctor over 8 months time, every time telling her that the pain was because she was either overweight (a little), her clothes were too tight (not even close), or that she had lifted our 4 year old wrong. She had asked for a MRI every visit, but was told it was a waste of time, that those machines did not show pain…. On the last visit she forced the issue. On the way out of the office the Doctor that finally ordered the MRI muttered, “What do you think that you are going to see? Tumors?” The result of the MRI was tumors in every visible bone scanned. 

Over the past 5 years we have tried many treatments that have controlled the disease for awhile, but then stops working. Over the past 3 months, Sarah has been on an phase 2 Trial of an FRG1 2 and 3 inhibitor hoping that would slow tumor growth. Unfortunately it did not, and things have spread to her liver and lungs. Her Oncologist says that if we can’t find a way to control this, we have 6 months at best."

Tell us in detail about the mom's Wish:

"Sarah’s wish is to travel with her girls and husband to the top of the Eiffel Tower in Paris, France. It’s something she’s always wanted to do. When she found out that life may be a bit shorter then expected, this is the family adventure she said that she really wanted to do. She has also mentioned Iceland and Banff Canada, but the one that holds most dear is Paris."

I was contacted by Ally's Wish and they talked to me about places I would like to go with my family. I told them about Paris, but with all the unrest in that part of the world they did not want to put my family in harms way. I asked about Kauai, but they said their funds are limited and the cost of flying five people there were too high, however they said they could send us to Oahu. We wrote back and forth by email. Part of me felt this was no longer my wish, but when it came down to it, Oahu is still Hawaii.

On February 23, we got an email that said they worked out a trip with a travel date of March 8. We were all feeling a little rushed but super excited! We had to let them know by the end of the day to book the trip.

That morning, we headed to the hospital to see Ireane and to share this news with her, but when we got there and entered her room I knew Ireane would not be with us much longer. I looked at Mark and told him we can't go with your mom this sick. We contacted Ally's Wish to tell them our trip was on hold...

After Ireane went to Heaven, we regrouped and asked if we could go at the end of March. Mark mentioned that the girls were on Spring Break and we didn't want to go over two weekends. They came back with March 12-18. We jumped on it and booked the trip!!!

Everything was happening so quickly. In the whirlwind days of packing and planning, people asked me if I was excited. I always answered YES, but in my heart this trip is bittersweet. This trip to Hawaii is a dream, but it came to me on the condition that my time is coming to an end.