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Hope and Patience

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Latest journal entry

Posted 2019-11-10T20:36:00Z

My journey

Over the last eight months, I have been on an unexpected ride with melanoma cancer. Let me start with gratitude. I am so grateful for my immediate and extended family and friends who have learned of my health situation, and regardless of my being unable to respond, have supported me anyway.

I am grateful that as an educator I’ve been a part of communities at RJH, EJH/EMS, Bell and ES. When you work in a school, it often feels like family, and friends/colleagues from these communities have supported me in remarkable ways. Thank you for your generosity. I am grateful for people both near and far who have acted with great kindness, giving me strength. I am grateful to be living in Seattle where I can access Seattle Cancer Care Alliance (SCCA), a place where people come all over the world for expert care. I am grateful for the medical advances in just the last five years in melanoma treatment. Particularly, the work at Fred Hutch and the time I got to spend with a Clinical Researcher, seeing how they are working with the tissues and tumors I donated to advance research. My first conversation with a medical oncologist made it clear, had it been just a few years prior, I wouldn’t have the opportunity to fight this cancer. My two lines of treatment to date have only been FDA approved for one year. I am grateful to have been raised with faith and spiritually which I have leaned into for strength to navigate difficult days.

My experience with melanoma from stage 1b to 3C:

I have tried to write this to inform family and friends about what has occurred multiple times. I initially wrote 13 pages, then six pages and now this. It is a balance between informing and oversharing, and I decided to (try) to stick to the details. I am saving you from dialog with doctors, observations of the medical system and my changed perspective on life.

I get my moles checked twice a year. I have since my 20’s. Once, I talked a dermatologist into three times a year due to my over anxiousness about my health. I realized that I am prone to skin cancer with outdoor swim team sun exposure growing up, lifeguarding, tanning beds in high school and living abroad and backpacking trips in my 20’s. I have very fair skin yet I tan really well, which is a dangerous combination.

Last November (almost a year ago exactly), at a routine skin check, I pointed out a spot on my left shoulder which I saw for the first time. I was told it was fine. I questioned that it was fine, then I believed the dermatologist. The following February, it caught my attention again. It was in a tough spot to see on my shoulder. I got a second opinion, and, in early March, the results came back as a rare type of melanoma called amelanotic melanoma. I was in disbelief.

In April, I had surgery resulting in a four-inch scar on my left shoulder and a lymph node was removed. Radioactive dye determined which lymph node to biopsy to see if the melanoma had spread. This lymph node tested positive which meant the melanoma had spread into my lymph system. The melanoma had a fast-mitotic rate and was referred to as aggressive. It was extremely difficult telling my family that the melanoma had spread. I did immunotherapy infusions from the end of April to mid-July. Scans in mid-July determined that the immunotherapy didn’t work as the melanoma had unfortunately spread. I now had multiple tumors in my left armpit. I would need another surgery (soon) and a second line of treatment. I learned that immunotherapy is more effective in older people and more so, with older men. Neither which is me.

In Early August, I had a seven-hour surgery removing all my left armpit lymph nodes, some neighboring soft tissue which was observed during surgery to also be impacted by the melanoma and a lymph duct procedure. I am in awe and thankful for my family who had to remain patient while my surgery went hours longer than expected.  My left arm is slowly regaining strength and mobility with physical therapy.

In mid-August, I started a targeted therapy (chemo) treatment which were pills taken multiple times a day. I had extreme side effects of big chills and high fever episodes. I went to the hospital multiple times in the first few weeks. In mid-September, I was admitted into UW’s oncology ICU unit and hospital for nearly two weeks. Every organ had its own team of doctors. It was intense. It was determined that the targeted therapy medication had put me into a multi-organ failure, and I was treated for septic shock. I am fortunate to have survived. After the first week in ICU, I was transferred to the general hospital not being able to walk and with neuropathy in my legs. With daily support of PT and OT, I was able to leave a week later with the assistance of a walker. I was told it would take months to feel a resemblance of normal again. It’s been nearly six weeks and my strength and organs are improving. I have had many ongoing medical appointments and there is a close watch on my organs that sustained the most significant injuries. I get blood draws frequently to continue to monitor my progress.

Now to the present:

Since mid-September when I first got admitted into the ICU, I have remained unmedicated because my body needs to heal from the septic shock, and my body can’t go back on the targeted therapy treatment because of the near fatal reaction it caused. My targeted therapy treatment was to be a 12-month plan, but I was only able to complete one month. This has been a tough reality for me and my family. I am slowly and steadily healing. Scans at the end of December will determine if any cancer is detectable and if another treatment option is needed. I will continue to get scans every 12 weeks for the foreseeable future. We have consulted multiple doctors at SCCA and an expert in Boston on my case. I try to focus on gratitude, but at times, it’s been challenging. This has been as much a mental and spiritual journey as it has a physical journey. I am currently focusing on healing naturally before my next scans with weekly acupuncture, reiki, meditation, aiming for clean eating, prayer and walks in nature which have been even more rejuvenating with the incredible sunny and beautiful fall weather.

I have included a picture with my childhood friend since first grade, Ryan Dwyer. Ryan and I went to elementary school, middle school and college together. Ryan was diagnosed this spring with Leukemia and his treatment plan has been grueling. We received infusions just doors down from each other a couple of times which was mind blowing. I am in awe of his strength and perseverance. To know Ryan is to love Ryan.

I am beyond grateful for the support our family has received. Truly, our community has lifted us during these difficult times. My healing has been a full-time job and I haven’t been able to thank people for their generosity and support. Please know, all messages and gestures of kindness have been unbelievably appreciated. Thank you!

Gracie and Benjamin are active and keeping us on our toes which is a great distraction. This Fall, Gracie played soccer and ran cross country. Mike was one of Gracie’s coaches and Benjamin suited up in soccer cleats for every practice and game and called himself the referee. I am entering a new decade this month and embrace the renewal in perspective this experience has provided for me. Mike, my parents, brother and my mother-in-law have gone above and beyond supporting us during this time.

We will continue to update this site as needed in the months to come. Thank you for your love, kindness, generosity and prayers.

 

 

 

 

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