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Oct 4, 2018 Latest post:
Nov 5, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
This is Allison, Marilyn's daughter. Some of you may know what's been happening for my mom over the past four months and others may not at all. I will try to capture the essence of her grace and optimism in the face of tremendous loss and change. She's an amazing woman and if you know her, you know that. If you are meeting her through my telling, I hope you'll know that too.
Marilyn arrived in Minneapolis on May 9th after her annual winter trip to her Texas home in Harlingen. She let my brother, Wesley and I know that she had a "bad ankle, possibly sprained" so that we wouldn't be surprised when we saw her. She was confident that it would heal and if she needed to see a doctor she would see her doctor in Lake City when she returned home.
I picked her up at the airport and was surprised when I pulled up to the curb to find her in in a wheelchair, being pushed by a gentle airline employee whose name she knew and said goodbye to with warmth and kindness, looking exhausted and very frail. She planned to stay overnight with my family, particularly excited to see her grandchildren, Ainsleigh and Gavin before I took her home to Lake City on Thursday afternoon.
The first evening in MN she was sick to her stomach and not able to keep food down. She was up much of the night and still sick in the morning but finally able to sleep for a few hours. She thought she maybe had the flu. The night before we had talked about going to Urgent Care the next day to have her ankle x-rayed. She felt so sick that she asked if we could just wait until she wasn't feeling so sick. I texted my husband, Mark and said, "she's trying to not have me take her to the doctor, what should I do?" Mark texted, "no, the vomiting is not normal. You need to take her in today." This proved to be true and has guided us in other decisions along the way. If something didn't seem right, it's likely a big deal and needs medical attention. Waiting to see if things resolved on their own hasn't proved effective through any of this. For someone who has been as self-sufficient and relatively healthy throughout her life without medical intervention, this was going to be a major shift, more than just physically.
At urgent care her ankle was x-rayed and two fractures were discovered. The doctor, also concerned about the vomiting, did a scan and discovered a bowel obstruction. He sent her to United Hospital in St. Paul immediately suggesting she would need surgery on her ankle and possibly the bowel if it couldn't be corrected without surgical intervention. Once hospitalized the bowel obstruction was the worst of her symptoms. Additional scans revealed a femoral hernia that would be surgically repaired. She was given a boot for her leg and told that she wasn't a candidate for surgery on her ankle. She has been in that boot until about a week ago . She also had a CT scan and biopsy because her doctors suspected cancer. The CT scan showed spots on her liver, lungs and pelvic bone. Devastating and surprising news.
She discharged from United Hospital after a week’s stay and began a stay at a transitional care unit to strengthen and prepare for "going home." While in the hospital we had conversations as a family about what was needed and what was going to be possible. Wesley, Mark and I were very surprised that mom agreed with us that going home to Lake City wasn't going to be possible. She loves her home, "truly home more than anywhere I've lived in my life," and not going back is sad and represents so many losses for her and for all of us. She's mourning the loss of the wonderful home we shared with her parents, our grandparents, the community she loves so much and her dear friends of almost forty years, so much personal history and her independence.
About a week and a half after her hospital discharge we learned her diagnosis, Stage IV Melanoma with metastasis to the liver, both lungs and bones. The origin of the melanoma wasn't known at that time, later discovered on the bottom of her right foot. We were all shocked and really sad, prognosis for Stage IV Melanoma isn't good. However, her outlook was positive and optimistic in spite of what seemed pretty grim.
We established care with MN Oncology in late May. In the first meeting, mom felt immediate trust and connection with Dr. Thurmes and his nurse, Brynn and optimism about the possibility of cure or at least great hope in having much more time given the advancements in melanoma treatment in recent years, even months. After hearing her options for treatment and Dr. Thurmes' recommendations she told him, "Well, I'm really excited and I'm looking forward to getting started." I couldn't believe it. Has anyone ever told an oncologist that they were excited and looking forward to cancer treatment?? She was excited to learn of new research and treatments that were helping people and saving lives. This has been her attitude and approach throughout. She would begin immunotherapy for her melanoma soon after this visit.
My mom has felt well cared for, respected by and confident in her care team and each individual care provider throughout her experience. She has gotten to know interesting people from many parts of the world. She has listened to stories and shared her own. If you are one of these people, you know that she was an ESL teacher for almost 30 years and that she has "kids" she loves dearly all over the world. Please know that you have impacted her in beautiful ways in your care for her and she remembers you.
Back to Marilyn's chronology... A PET scan early in her treatment showed significant metastasis to her right leg bone, the cause of the initial fractures she had in Texas. She did well in TCU with LOTS of PT and OT and was discharged on Memorial Day. She spent June in her new apartment in St. Anthony, MN, continuing with both PT and OT and had a home care nurse visiting her apartment. During that time she also began a round of radiation to the front of her lower right leg for both pain relief and hopefully regeneration of the bone.
Her apartment is 2 1/2 blocks from our house in NE Minneapolis. Ainsleigh, Gavin, Mark and I walk to her apartment often to visit and/or to take her out and to appointments. The kids love to visit Grammy in her apartment. In the summer they enjoyed swimming in the apartment complex' pool and watching Jeopardy! or Wheel of Fortune with Grammy while eating Lucky Charms, her special snack she always has on hand for them. It's also a comfortable distance and good location for Wesley to get to from his home in Forest Lake.
On July 8th she was discharged from home care and was very excited to have some time to relax and settle in at her apartment without so many appointments. On July 11th after a weekend of unexplained pain and new swelling in her right leg we went to the ER at Abbott NorthWestern Hospital. She was admitted to the hospital with a broken tibia, broken by the cancer, relentless. This time surgery was the result. The surgeon cleaned bone debris, packed her heel with bone cement and attached a plate to her tibia to stabilize it and reduce pain from rubbing bone on bone. He told her that the surgery was necessary if she was ever going to be able to bear weight on that leg again and not be in a wheelchair for the rest of her life. She was absolute in her choice to have the surgery and endured much pain following that surgery but remained hopeful and optimistic that it would help, and it has helped.
July was filled with appointments, pain, a week long hospitalization, a stay at aTCU that ran in to early August and continued immunotherapy. She had a wonderful visit from her cousin, Michele who came from California for 4 days and helped her settle back in to her apartment. She lifted my mom's spirits and was her 24 hour nurse for those days! They had fun reminiscing about childhood and looking at photos together.
Later in August she began to have bleeding on the bottom of her foot. The bleeding was coming from a tumor that was protruding under the smallest toe. This brought up the question of whether or not the immunotherapy was working. She immediately started another round of radiation to shrink the tumor on the bottom of her foot and stop the bleeding. This round of radiation was really difficult, lots of pain with the process. She had more tests and her September 4th appointment revealed that no, the immunotherapy doesn't seem to be working. Dr. Thurmes talked through an additional option that would likely have horrible side effects and made his recommendations. Mom had a follow-up oncology appointment on August 20th with Brynn and Dr. Thurmes. Before this appointment we had been talking together about options. While she had always thought that she would utilize hospice care at the end of her life, we were heartbroken to come to the realization that now was the time.
Mom's hospice admission was on Friday, September 21st, much too soon for all of us. However, upon meeting the team, learning of what could be provided to her at home and a focus on alleviating her intense pain, hospice has been a God-send. Her nurse, Ross and his physician colleagues continue to work to get her pain managed. In the meantime she is getting to know new people, hearing their stories and sharing hers--a beautiful thing that always brings her great joy.