My View on Faith

My View on Faith

I have been spending a lot of time this past week avoiding the news and watching a lot of Netflix. The main character in “Call the Midwife” said something that really resonated with me…

Faith cannot be questioned, only lived. And if I could not grasp it then, I felt its heartbeat, which was love. ~Call the Midwife

I am so very grateful for the emotional support I have received throughout my cancer journey.

Here is a photo of a very special delivery my husband found in our driveway earlier this week – Kindness Rocks personally painted for me by former co-workers with my old real estate Team (and even some of their kids!) It really lifted my heart.

My next project is coating them all with clear outdoor sealer and making my own Kindness Rock Garden for those who walk or drive by, hoping to share the beautiful message of kindness and hope with others.

My faith in my oncology team and my own inner voice, led me back to immunotherapy treatment earlier this week. I don’t know what is going to happen. The one page I will try to update if there is anything new, is my About Me page. This is my last post to my blog because I have decided my focus during this time needs to be on other things.

And no matter what happens when, I hope people will consider a donation to my husbands 100 Mile Ride to benefit Closer to Free 2020 this fall. I am alive and able to write this final blog post today thanks to the beneficiaries of the Closer to Free fundraising, Smilow Cancer Hospital!

Rare Disease Day 2020

Rare Disease Day 2020

Today is Rare Disease Day 2020

Eight years ago I was a 50-something who took no medicine except Metamucil! I had just made a big career change and got my real estate license. I still freelanced designing websites for local non-profits and artists and like today, I blogged about topics of interest to me and sold web services online.

Today I’m one of the rarest of the rare – someone with two rare diseases!

In November 2012 I was diagnosed with the rare cancer called uveal melanoma, a rare ocular melanoma (eye cancer). Since then I have tried to share information about this disease and encourage people to get annual dilated eye exams because while there are risk factors, there are often no symptoms of this deadly cancer.

This cancer spreads in 50% of patients within the first 5 years. I was diagnosed with MUM (metastasized uveal melanoma) just 2 weeks after my five year anniversary. In December 2017 I received my first treatment for the tumor in my liver, an immunotherapy treatment Ipilimumab (Yervoy) plus nivolumab (Opdivo). In January 2018 I was admitted to the hospital with grade 4 adverse effects from the ipi/nivo treatment. I write about that in an about me page. One of the side effects was a second rare disease, Myasthenia Gravis. Myasthenia gravis (MG) is a rare but life-threatening adverse event of immune checkpoint inhibitors (ICI).

Last month I started immunotherapy treatment again, this time just Nivo. Unfortunately my bloodwork before this weeks infusion showed that I am experiencing adverse effects, there is an enzyme in my blood which shows my muscles are being broken down. So I am watching for any physical symptoms and getting bloodwork weekly. So that is the advice I share these days with my fellow patients, share any unusual symptoms with your oncologists right away because the side effects of treatment can often be treated successfully. Sharing Rare Disease Day is not easy for me because it is a reminder that my days are limited. My rare disease does not have a cure. But hopefully by taking advantage of every possible treatment I can keep living with cancer as long as possible.