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.

Saturday, March 14, 2015

Bucket List/ gofundme

Thank you from the bottom of my heart! I learned that we reached the goal of $7,500 for Paris! Any money raised from this point on will help me cross off other Bucket List items, pay for medical expenses, or go into college funds for the girls. Here are the next things on my Bucket List:

1. Grow old with Mark.
2. Watch our children grow.
3. Meet Ellen and thank her for her dancing inspiration during my chemos.
4. Give back BIG.

When I am asked about places I dream of going, my first choice is Paris. I want to climb to the top of the Effile Tower, show the girls some great works of art and enjoy some French pastries.

My second choice would be Disney and Universal Studios to see Harry Potter.

My third would be California to see my sister, Ashley, and her family with my family. ( I have been out to visit her twice, but only Olivia came with me the last time)

Becky brought up our medical bills. Mark is self-employed and I work part-time, mainly for medical insurance. When I was first diagnosed, my plan paid 100%, but now my employer changed to a 80/20 plan. With doctor costs and medications we pay about $6000 out of pocket per year. By the grace of God we do not have any medical debt thus far, but if/when I stop working we will need to find new insurance... so many things to think about and plan for.

Only God knows how much time each of us will have on this earth.

We only get so much time with our kids before they grow up, move out of the house and set off on journeys of their own. Our oldest daughter, Natalie, turned 15 this month! Olivia has been telling me that it's taking way too long to get to her birthday, because she can't wait to be 5. We may look forward to things, but we really only have NOW. I want to make memories with my girls. I know it doesn't take a big trip or a distant destination to create memories. I understand the sweetest memories happen when we are fully present in this very moment, in all the beautiful, quiet moments of our lives. It's about getting up to let Amore out and seeing a sunrise that reaches across the horizon and touches me. It's about lying in bed and feeling the warmth of a child and a dog snuggled up against me, falling asleep to the rhythm of our breaths. It's about walking through sand with bare feet, kissing my husband in the rain, soaking in a hot bubble bath. It's about facing life on life's terms, with an open mind and an open heart. It's about looking for and finding treasures along the way. A Bucket List is about dreaming. It's about hope. Thank you for dreaming with me. Thank you for helping make my dreams come true!

Tuesday, March 3, 2015

Game Plan

I saw Dr. Laudi today to come up with our game plan. We are almost done with the first round of Palbociclib. The plan is to do 2 or 3 rounds. That would bring us to the end of April before we do another PET/ CT scan, unless my pain increases or I get jaundiced. Then, I would get scanned sooner.

We talked about my pain. I feel it is better controlled with the 50 mcg of fentanyl, but I feel more fatigued. It's a trade off, I guess. My port still bugs me, but he is not ready to have it removed just yet.

My weight is down another 5 pounds this month. I told him I do eat three meals plus snacks and dessert. I feel like I eat enough, though people around me beg to differ.

I told Dr. Laudi the last few weeks have been especially hard. I told him about losing my mother-in-law...

Death has a way of showing us what an empty space we leave in the world. Death revisits our lives. Death shows us the ways our lives continue through the lives of those we love. Death can bring out the worst in people, but Death can also reveal the absolute best in people. Death levels the field, plays no favorites, gives us all a turn. At Ireane's graveside service, we wrapped blankets around each other and shivered and huddled together and said a prayer. We took part in the rituals of our faith, of our people, of our family. She is part of us still...

At the actual burial, I sat with Olivia and watched from the car. I wondered what her little head was making out of all these things she was seeing. The staff at Fort Snelling Cemetery had prepared Ireane's gravesite. A man working with his back to us bent down to help lower her beautiful casket into the ground, returning her to the earth, and as he did... we got a half moon. A plumber-crack. In the midst of tears... a smile.

Olivia watched all this quietly, then whispered, "Mom, is that God?"

I pulled her close to me, hugged her and kissed her. "God is everywhere. God is in everyone." 

Please continue to pray for peace and wisdom and love for our world. Please pray that I will be given more time with my children and this drug will shrink my tumors. Please continue to see God in yourself, as I do.