Loving sisters: Laura Tassoni is there, as Shelly Johnson faces brain cancer

Shelly (Westby) Johnson is on a journey, but she isn’t alone. God is with her, Jesus is with her, and her family and friends are with her. Johnson, of Britt, has breast cancer that metastasized to her brain and a cure is not to be.

Laura (Westby) Tassoni, of Gilbert, has written about her sister’s strength in the face of adversity.

A Go Fund Me account has been set up, and a fundraising benefit is planned at the Virginia Elks Club 3-7 p.m. Saturday, April 20. There will be a rigatoni dinner, silent auction and raffles.

Tassoni wrote, “Shelly’s metastatic brain cancer has no cure at this time. This is it, her norm. CT scans, MRIs, prayers, blood draws, echocardiograms, face masks, radiation, prayers, clinics, labs, hospitals, prayers, medications for cancer, preventative seizure meds, preventative dementia meds, and nausea, bills, IVs, infusions, PET scans, and more prayers.”

—

Tassoni has written extensively about her beloved sister. About her growing up years:

“Shelly is just your ordinary Iron Range daughter, sister, wife, mother, aunt, cousin, and friend. Growing up in Britt, she did the typical childhood things like riding her bike to Arrowhead Lake for a swim on a hot summer day or running through grandpa’s junk yard or climbing and playing on the jungle gym (built for the hundreds of grandchildren John and Lu Westby eventually had), sneaking out and hanging with the cousins, playing in the chicken coop fort, sleepovers with friends and throwing purses in the neighbor’s tree. You know, regular kid stuff. Growing up with such a large family has its perks! You have friends for life!” She is the daughter of Alden Westby of Britt and the late Cynthia (Kamunen) Westby.

“Graduating from VHS in 1993, she went to further her education to become a teacher. She attended Mesabi Community College and then UMD for elementary education. She met her love, Paul, while on a bus trip with friends and they married on June 27, 1998.” She studied to become a teacher, then an LPN. She and Paul would have two sons, Andrew and Logan.

She decided to enroll in the RN program at Lake Superior College and worked at the Cook Hospital in the medical unit and ER. She later became director of nurses and eventually went to St. Raphael’s/Monarch Health care center in Eveleth, where she was the MDS Coordinator the last 10 years. She also worked with the Essentia Health Hospice Care Program for a time.

---

Life is Good

Tassoni’s writing continues: “Life is good. Marriage, family, kids, dogs, careers, friends, all the things that make your world go around. She’s happy, full of life. Of course, we know real life isn’t all rainbows and butterflies and every life has its ups and downs, speed bumps and a few hiccups but overall, it was pretty darn good. Enjoying all the blessings the good Lord has bestowed on her life, Shelly does it all. She loves to bake. So many people love her many flavors of filled cupcakes. ‘Shelly’s Jellies’ are some of the best, so she’s been told. She loves to scrapbook and make cards and doing so with her mom and mother-in-law and friends where she will go on scrapbooking weekends. With her camera or iPhone in hand, the camera psycho she is, takes beautiful photos of people, landscapes, pets. Her many interests include traveling-especially the Caribbean and other warm destinations, concerts of all kinds, camping on Saganaga Lake

4-wheeling rides with friends and family, and fishing and boating on ‘her’ Lake of the Woods, where, if she had a choice, would be renamed after her.

---

Life Takes a Turn

Tassoni continues: “Here’s where her ‘regular’ life takes the proverbial turn down that road that no one wants to be on. Shelly, like most women, had her ‘regular’ check-ups and mammograms, and everything was always fine. On July 30, 2020, while in the shower, Shelly discovered a lump in her right breast. It was oblong, like a pinecone and about the size of a grape and hard. With her nursing background, she knew she had something that was not good, and she was correct. She called her doctor, and they scheduled a mammogram and an ultrasound needle biopsy. While on the phone with a coworker, Shelly read her results in her provider app and there it was in black and white, staring her down like a demon, those words, spiculated mass, category 5 BI-RADS (all the terms normal people have to google). She knew it. Cancer. Words stopped. Thinking stopped. Time stopped. A fog rolled in bringing with it, the fear. She had to screenshot her chart to her coworker because she couldn’t find the words to tell her what was going on. She had to tell her husband, her children, her family, and her friends. August 19, 2020, her mom’s health was failing and with such sad news, there’s no better way to deliver it than go to her parents’ house, order pizza, and pass out the bracelets that they all still wear today. Her family cried. Her dad comforted her ailing mother who would have done anything to take this from her baby girl. A Snapchat call was made to other family and friends. The family talked, laughed, cried, named the tumor Juan. The news was out, and her support team was ready! Prayers were started!

“Diagnosed with Stage 2B (early stage), HER+2 (Human Epidermal Growth Factor Receptor 2-it promotes the rapid growth of cells) Invasive Ductal Carcinoma of the breast, Shelly’s care team came up with a plan. She would start 16 rounds of 3 different types of chemotherapy drugs and an IV infusion of Herceptin (specifically targets the HER2 receptors). She also decided that a double mastectomy would be the best option as she didn’t want to take any chances of regrowth. Right before treatment started, on September 9 she had another mamo. Due to her type of cancer, in just 6 weeks, Juan had grown a satellite lesion, an offspring. This one was named Juanson. She started Doxorubicin chemo, AKA the Red Devil (due to the color and harsh side effects) and Cytoxan chemo for 4 weeks and then Taxol chemo for 12 weeks and the IV Herceptin every 3 weeks that was infused through a port that was placed under her skin on her chest. She lost her hair; her nails were dying. She had to tape her toenails on to keep them from snagging in her socks and shoes. She got cold, tired, and sometimes nauseated, but she knew this meant the treatment is working. Meanwhile, her support team including her husband, sons, dad, mom, family, and friends rallied. They cooked, they drove, they prayed, they sent text messages, they called, they said more prayers, and about 30 of them shaved their heads including 7 of her aunts just to show her that she wasn’t alone! This amount of support was staggering to Shelly! She knew she wasn’t going to fight this alone. She rang the bell on January 20th, 2021, signaling the end of the chemo!! Several friends and family decided to ‘ring’ Shelly home. She turned the corner on her gravel road in the dark of night and there were so many flashing lights that she thought there was an emergency. Everyone had their cars parked on each side of the road with their flashers on, ringing bells, holding signs, showing love! Chemo did its job and she beat the beast!

“One month later, on February 20, 2021, it was on to the next step, the double mastectomy. Good news: Pathology found no cancer where the tumors originally were in her breast. Time to heal and start reconstructive surgery in September of 2021. All was good and everything was healing nicely, as nicely as it could. Due to the fact that the cancer was caught early and had not spread to the lymph nodes according to the MRI, and the possible side effects from the Herceptin (she had to have labs and echocardiograms to monitor her heart) that she was still on could cause congestive heart failure or reduced heart function, those infusions were ended in November of 2021. Her port was removed and there was light at the end of this cancer tunnel. In the meantime, her mom saw her go through this rough patch. She reminded Shelly about the Finnish Sisu meaning stoic determination and she never stopped praying for her. One text she had sent to Shelly read, “Remember that you’re consuming me while you’re getting your chemo-that’s the best way I can describe what I feel-Love You…”. Her sweet mother sadly passed on July 31, 2021, but not before knowing that the chemo had worked. She went off to heaven with an easy mindset regarding her beloved daughter, Shelly, and her battle with cancer.

“Shelly worked all the while on chemo and infusions of Herceptin, only taking Fridays off of work to rest and time for her surgeries. She went on with life working at a job that she loved, spending time up on the lake, fishing, scrapbooking, doing all the normal things she loved to do. Heading into fall, you would never have guessed that she was ever ill. Losing her mother made the holidays hard but Sisu and spending precious time with loved ones eased that new chapter in her life with some peace.”

---

The “Incident”

Tassoni continued. “January 18, 2022, The Incident. It’s just another regular Tuesday with work, kids, sports. While working that evening, the state decided to make a surprise inspection so it was kind of a blessing that she didn’t have a game to attend; she could just focus on her job. She was feeling ‘off.’ She thought it was possibly due to hunger or too much caffeine. She had noticed a light flashing out of the corner of her eye off and on all evening. As she was leaving, she made a call to a friend, chit-chatting about the day’s events, they continued talking as she drove home (hands-free of course). Then Shelly made a statement that concerned her friend. Shelly said that she didn’t know where she was and that she may need to use her map. Her friend instructed that she should pull over when she heard Shelly make a painful groan and then the obvious noise of a car going off-road and scraping iron. Shelly had been in a car crash. Shelly was unresponsive. A passerby, who had witnessed Shelly drive into the ditch, called 911. Emergency help arrived.

It was discovered she had a broken back and lesions on her brain that caused a seizure. Surgery was on January 20, 2022, the 1-year anniversary of ringing the chemo bell. “She was given some strong narcotics for the pain and that, along with the tumors on her brain, made her hallucinate. She had been looking at pictures of her boys and then the nurse practitioners appeared to have the boys’ faces. Even all the people on social media had the boys’ faces. She had enough of that and stopped the meds on Friday and by Sunday, she let the hospital know that she was going home. She was alone the whole time after her back surgery. Alone, scared, angry, depressed, and longing to see and hold her husband and children. Wondering what is going on in her head. Knowing that it’s probably not going to be good news. Were the masses benign? Or did the cancer spread? She was sure it had. What does this mean? All the questions Shelly had with very little to no answers. She just wanted to go home and heal because brain surgery was the next step. She rested and healed and enjoyed some quality family time.”

---

Valentine’s Day 2022 is Special

Valentine’s Day 2022 was very special that year. “Shelly was going into surgery to get a tissue sample so the doctors could figure out whether or not it was cancer. Her friends wanted to give her a special send off. They decided to write valentines with special wishes and prayers on them, make road signs with more special messages and signs of hearts. They lined the road from her house to the highway with them and all the valentines were ready for her to read on her way to the hospital. Now, the doctors had to go into two areas of her brain and take biopsies, hence the name ‘double craniotomy.’ Side effects and possible complications from this surgery (memory loss, swelling, seizures, or even death) had her and so many people that loved her, worried. All they could do was pray.

---

Cancer metastasizes to her brain

Pathology confirmed that her HER2+ breast cancer had metastasized to her brain. Tassoni wrote, “She is now in Stage 4. The doctor told her to get all her affairs in order, get all plans written down and then shove them in a bottom drawer and get on with her life. They removed all the cancer that they could, and they were able to get most of it. To be safe, they also decided to do radiation therapy. Shelly would receive targeted radiation called ‘Cyber Knife’. This type of treatment uses precise measurements. They map your brain with a CT scan, make a hard, plastic mesh-like mask that they bolt to the table, so you are very still during the procedure, and you lay there for about an hour while the robotic arm delivers the intense radiation directly to the areas needed. She received five treatments March 7-11, 2022. To celebrate, Shelly and Logan went to Lake Placid with his hockey team for a break. She was tired, but she was there. You couldn’t keep that hockey mom down!

“Shelly has to have routine MRIs, routine checkups, routine labs. This is the norm. This is what she has to do while fighting this disease. She had more tumors discovered in December of 2022. She had to have more Cyber Knife treatments. Herceptin infusions needed to be started again. Her health care team decided that a PET scan should be done. This is the kind of scan that uses a mildly radioactive liquid tracer that shows up in areas where cells are more active than normal; it looks at blood flow, structures, to and from organs. Good news: it was clear! No cancer anywhere else in the body. The MRI in March of 2023 showed more masses in her brain which means 5 more Cyber Knife treatments! Ok, is this the new norm? Three months later in July, another MRI, and another abnormal image and another five treatments.

“In August 2023, they decided to start an oral chemo regiment; one that will cross the blood-brain barrier. It was oral chemo medications (Xeloda and Tukysa) along with the Herceptin. This made her very ill. She lost 30 pounds in a month. Her hands and feet blistered so badly that she had a hard time walking and writing. She got sores in her nose. She couldn’t eat. She would fall asleep while working. This is not living and yet it was the norm. Shelly had to go to the hospital twice to get fluids through an IV. She was exhausted. She had to leave her job and go on disability. She wasn’t insured through her employer anymore. The doctors decided to stop the meds until she recovered from this. Then she would only take Tukysa and Herceptin.

“She said it’s more about the quality of life not the quantity. She was able to get better and the next MRI in November of 2023 was CLEAR! Another good news day! And Shelly was feeling energetic, wonderful, and full of life. She can breathe, relax, and enjoy life…for a while.”

Another routine MRI in February 2024 wasn’t as good as she had hoped, Tassoni said, for it showed too many tumors to count and Cyber Knife wouldn’t be an option. But a PET scan came back clear. “March was a busy month of doctor’s visits, scans, labs, consults, paperwork. Shelly had to undergo 15 Whole Brain Radiation Treatments over three weeks. Side effects could have been severe but so far, she’s just fatigued and has lost all of her hair. She said she’s not as emotional this time around—it’ll grow back! If there are any other effects, that will remain to be seen. She didn’t ring the bell to signal the end of the radiation treatments. Shelly knows that she’s not beating this, at least not in this round. She’ll put on her pink gloves and fight until she wins, one way or another. A trip to the Mayo Clinic was scheduled right after the WBR treatments were completed and the appointment went well. She’s tired but still ready and able to fight. Between her care team at Essentia and the doctors at the Mayo, they have decided to restart two oral chemo pills (a lesser dose of Xeloda, the same medication that made her ill and a new one, Tykerb). As of now, there aren’t any clinical trials that Shelly would be a good candidate for. The consult at the Mayo confirmed the plan her care team in Duluth decided to go with. Her next scan, scheduled for this July, will be a major factor on the upcoming paths to be determined. It can go three ways—no cancer, cancer that got smaller or stayed the same, and cancer that’s new or grew.”

---

Costs are “astounding”

The amount of time and money spent on all of this is “astounding,” Tassoni said. She figures it’s probably in the ballpark of $2.5 million. “Shelly was very fortunate having double coverage with insurance but that’s no longer the case. She wonders about the next chapter. How much more is there going to be? These current medications will cost $15-20 thousand a month. What about the future? When the time comes, what expenses will she and her family have to pay for more treatments, travel, lodging? And there will be (hopefully years from now) the kind of expenses that no one really wants to address such as end of life care, a funeral service, a burial plot, and/or a cremation. Difficult but necessary decisions that have to be discussed, preferably now before it’s too late. Shelly would rather see these things figured out now and not leave it up to her husband and children to decide. That’s the kind of person she is-always thinking of others.”

---

Knows where she’ll spend eternity

Tassoni continued, “Shelly is not afraid of what the future holds for her. Does she wish to see her children get married and meet her grandchildren? Yes. Does she want to grow old with the love of her life? Yes. Is she afraid of dying? No. She knows that there are medications to help with pain. She knows where she’ll spend eternity. Do you? The peace that comes with knowing this allows her to rest in His arms. The only fear she has is what the people in her life will feel and go through when she leaves this temporary home. She knows grief and loss and her only hope is that they too rest in the arms of the Lord. Does she cry? Yes! Then she wipes the tears and continues on with her day. She could curl up in a ball in the corner of a room and cry herself to the grave, but what good would that do? What example would she set for her husband and boys and friends and family? She could choose to dwell on the negative and on the inevitable but instead, she’s focusing on the hope. She’s not going to set up camp at Pity City! All the medical stats say there is little chance to beat this but, as Lloyd from Dumb and Dumber said when he was given the one in a million odds,” So, you’re telling me there’s a chance?” Yes! People often question, how does she do it? She always responds with the same answer, ‘Jesus and Sisu!’ Lately, calls and messages seem to ask what does she need? Honestly, she needs prayers, and a cure would help as well too! Anything beyond that are pure blessings! She feels the prayers and the love and the light. It lifts her up. She may be weak at times, but her God is strong.

“What good can come out of all of this? Shelly wants people to know these things: ‘1. Get your mammograms. Do your self-exams.’ Shelly had gotten advice from people who went through chemo and mastectomies, but didn’t know anything about radiation, oral chemo and what all those treatments entailed. Research your type of cancer. Advocate for your health. If you’re diagnosed with HER2+, you fight for PET scans and MRIs. They should be commonplace as this type of breast cancer is very aggressive and one of the cancers likely to metastasize. ‘2. Find support groups, especially on social media. They have people going through the same cancers and they have so much information and advice.’ The private groups have the best support and stories of their journeys. HER2+ cancer treatments have come a long way over the years, and it has some of the best break throughs in treatments. She just read a story about a woman who had whole brain radiation and has been clear for 4 years! ‘3. Keep praying for her and her family.’ Shelly’s faith in her Jesus and His finished work on the cross for her, personally, has given her peace with her cancer journey. She has had so many humbling experiences (including the fundraising benefit her friends and family are hosting) while fighting the good fight. Shelly is lovingly overwhelmed by the support her team, who love her, and even those people who she has never met, and what they are graciously doing to help her and her family. She said that there are people who are far worse off than she is, and this has truly humbled her again. She knows exactly who she is and why she’s so blessed. She knows she’s a sinner needing salvation. She knows that it is only by God’s grace, his death, burial, and resurrection, she’s been saved from an eternity in hell she deserved to an eternity in heaven that He gives to all who believe. Harsh words? No, there is always good news, Shelly knows how much Jesus loves her and if he can use her to be a light for others, he will. She’s ready for whatever He has planned.

“Jeremiah 29:11 ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’

“If this were you, how would you handle it? Her cancer story could be your story.”