
Josi's Journey
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Josi Meyer is a spark of life to everyone who knows her. An excellent nurse, wife, daughter, sister, niece, aunt and friend. Unfortunately, Josi has been dealt a really difficult hand the last couple of years and needs our help. The following account is Josi's Journey, stated in her own words:
"My cancer journey started in early spring of 2021. I had noticed an irregular mole on my right inner calf. It was normal in size and did not have irregular edges, but it was darker in color and it was raised. I’ve had a few atypical moles in the past that have been biopsied and required re-excision with the goal of obtaining clear margins. In fact, I had been to the dermatologist less than a year prior for a full body skin check. I made an appointment to get it checked out, but unfortunately, due to covid, everything was delayed. On April 1st, 2021, I was able to be seen and get my mole biopsied. A few days later I got the devastating results that would be life changing. It was melanoma. How I wished it would just be an April fool’s joke. My doctor informed me that based on the size of the tumor, (1.7mm) I would need surgery. The dermatologist recommended a wide local excision and sentinel lymph node biopsy (SLNB) under general anesthesia to completely remove the skin cancer and determine staging. Surgery went well, minus a few hiccups. The surgeon took 2 nodes that “lit up” from the radioactive dye that was injected prior to surgery. Pathology results showed that both lymph nodes came back positive for metastatic melanoma. My surgeon compared these spots to the size of a “period” at the end of a sentence. This was hopeful based on his opinion and the opinion of my oncologist, but it also classified me as having stage 3 melanoma. From there, my cancer care team developed a plan for treatment that included frequent blood draws (and eventual port placement), clinic visits, PET scans and increased dermatologist skin checks from every 6 months to a year, to every 3 months. Also, I was started on Pembrolizumab (Keytruda) infusions. These were every 3 weeks and required 4-5 hours spent at the hospital each time. I was able to complete around 10 or 11 cycles out of the desired 16 infusions. Initially, it started to attack my liver, but with a few weeks off, my liver enzymes improved and I was able to continue with them. Unfortunately, it later caused an autoimmune response in my lungs that required permanent discontinuation in January of 2022. This was discouraging and hard to grasp… almost like a failure. Three months later I developed a delayed allergic reaction to Pembrolizumab called erythema multiforme (all over body rash that caused severe burning, itching, pain and scarring). I needed multiple biopsies taken in an attempt to diagnose it but unfortunately, no treatments available to me were helpful. It typically resolves within 2 to 4 weeks but mine lasted 3 months. It made working in healthcare as a nurse difficult because gloves and hand sanitizer worsened my symptoms. At this time, my PET scan revealed a new spot of metastatic disease in the right inguinal area (where my previous lymph nodes were first removed). This required another surgery where they removed 2 additional lymph nodes (another one that was positive for melanoma and one that was negative) and a melanoma "tumor in transit". My surgery unfortunately caused an inguinal seroma (fluid accumulation at/near the site of the surgical incision). This also happened after my initial surgery and took about 5-6 months to heal. Both were about the size of a large baseball which put pressure and pain on the healing incision. Unfortunately, my second seroma became infected, and I ended up at the Urgency room. Luckily, my surgeon is an amazing advocate for her patients and was able to directly admit me to the hospital. There, I received IV antibiotics and another
surgery for a drain placement. Two days later I was discharged with my drain and oral antibiotics in hopes of it healing. The drain did not do its job so my surgeon decided that a wound vac would be the best option (a wound vac is a vacuum assisted closure device used to assist in wound healing). Insurance helped with some coverage but to have the device in your possession was almost $30 per day out of pocket. I ended up having it for about 3 weeks because it stopped being effective enough to make it worth the out-of-pocket cost (per my surgeon). Because my cancer had returned to the same area it had metastasized to, my oncologist recommended I start radiation therapy to target any remaining cancer cells that were too small to show up on a PET scan. This required me togo to radiation Monday through Friday for 20 rounds. The bonus is I got free parking which was close to the clinic! Deals like that don’t often come around in healthcare. Despite the bonus, I also found out that I had several blood clots throughout my lungs and needed to start on blood thinners ASAP. I had felt short of breath throughout the summer and mentioned it several times, but it seemed to go unnoticed because there were bigger issues to address. I started on Xarelto which helped with the breathing, but the cost definitely has the ability to take your breath away. My oncologist recommended that I start targeted therapy with oral chemo (Dabrafenib and Trametinib) after I completed radiation. I got to celebrate my last day of radiation by having another PET scan which showed some suspicion for disease progression in my left inguinal lymph nodes. This required an ultrasound guided biopsy which ended up being negative for melanoma. I was able to proceed with the targeted therapy as scheduled for about a month until I developed a bad case of pneumonia. My specialty pharmacist was concerned about how bad I sounded and how bad my symptoms were that he recommended I temporarily stop my oral chemo in order to optimize healing time. My oncologist agreed and it was put on hold for less than 2 months. It was also on hold while I was dealing with my surgical infection and going through radiation. In December, my PET scan didn’t show anything concerning. For Christmas, my husband and I got a brand new boiler!! Side note, it wasn’t on our Christmas list. In January, I had a CT scan of my chest/abdomen/pelvis to reassess my pneumonia and give my doctor some updated imaging. The chest CT showed that the blood clots in my lungs had resolved but showed multiple pulmonary nodules (six to be exact) which represented metastatic disease. The healing third rib fracture is still present although it’s cause remains unknown. It does explain the right sided chest pain I had been experiencing for several months without any clear injury. The CT of the abdomen and pelvis showed 2 additional metastases in my liver. I am officially stage 4 and have been battling this since 2021. This was not the news or the plan for the new year. I am back on the targeted oral chemo which causes horrible side effects including nausea, fatigue, joint pain, and heat intolerance (I already run hot). I made the decision to take a medical leave of absence from work to focus on optimizing the effects of the chemo. These meds require you to take them either 1 hour prior to a meal or 2 to 3 hours after, twice a day. Not exactly the most flexible schedule to work around when you’re still working (especially with the level of nausea it causes). My next scans are scheduled on February 22nd. Just 6 days before my birthday and 8 days before our 5-year wedding anniversary. From there, the hope is that the oral chemo will have targeted the tumors, further decreasing them in size. The plan is to also add in a dual combination immunotherapy to the treatment regimen. This will require more trips to Rochester and probably more time off. In addition to my family, friends and coworkers, my husband hasbeen my #1 supporter. He’s taken multiple days off, some without pay, and a lot without sleep. He’s left work early and gone in late. Not only has he helped me make appointments, but he’s been there for every one of them. Cancer sucks but the people who have been by my side along the way are amazing and I thank them for that. All thoughts, prayers and any type of support are thoroughly appreciated, and I am forever grateful for it."
Let's band together with Josi to support her in this complicated time. Josi and her husband Nick have spent $8,000 on emergency home repairs this year, they have over $3,000 dollars in medical bills still looming from last year, and have mounted $8,000 in medical bills this year. Josi has needed to take time off to recuperate while taking chemo. She has more scans starting up again at the end of February, as well as immunotherapies and more trips down to Rochester. Whatever we can do to lift this financial load would be greatly appreciated.
Thank you everyone-!
Carrie
Organizer and beneficiary
Kellie Adellie
Organizer
Minneapolis, MN
Josilyn Meyer
Beneficiary