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...