March 2018 My last MRI showed the chemo is still working, shrinking everything.  This makes four months since I was in the ICU fighting for my life. It's bittersweet because my doctor says these chemo meds will eventually stop working, whether it be two years or two months. I know I just need to be thankful for the time that it gives me. I've been looking into clinical trials and I meet with a doctor at Providence in Portland this week to see if he can help. I don't have a lot to write about right now, I just wanted to update the latest good news. We recently took a trip to the Oregon co ..read more

Dec 20 2017 I had a really special birthday spent with loved ones today. It's been about four weeks of healing from a Brain surgery that was really rough. Thankfully I had my mother in-law here to  help with hings. I woke up from the anesthesia and immediately looked around. Everyone was there, my mom, sister Guida and her husband Mark, sister Holly, my brother Mike and his wife Helen. I was surprised they werer all there for just a little surgery. Later I learned that I was in such bad shape that the nurses had told Corey to call all of my family to come and say good bye just in case. I ..read more

An update on Jen, from Corey, It's been a very long two weeks for our Jen. On Thursday, November 16th she had brain surgery to biopsy and see if her cancer had spread to the meninges layer of her brain (and cerebrospinal fluid). The neurosurgeon was also placing a shunt which would drain excess fluid (CSF) from her brain. The excess fluid & pressure was irritating her brain tissue and causing horrible nausea and headaches. The surgery caused several hemorrhages/brain bleeds and she woke up with a numb face and left hand. She lost her speech and ability to eat. The surgery also confirmed ..read more

October, 2017 So much has happened this month, both good and bad, but I'll start with the bad stuff, and get that out of the way. Earlier this month I started feeling really bad. Horrible headaches and nausea, and just really feeling crumby overall. I happened to have my mother in law here in town staying with us for a week. She came down so she could drive me to my lumber puncture and just all around help me out while Corey was at work. She was so much help driving me and cooking, and just being there for me. I had a good experience with my lumbar puncture. The pain was very minimal, and it w ..read more

September 6th 2017 Today my oncologist hugged me. He's been providing my care for the last seven years and I've never gotten a full on tight armed hug. I've gotten a shoulder pat, a "hang in there", but never a hug. That's how I know how serious this is. After he told me the news we sat there in silence for a few minutes and then I said, "this is really bad isn't it?" He just slowly nodded and said "yes." Leptomeningeal Disease is something I've read about in detail in the past and I've been hoping and praying it would never progress to that situation. It's very rare and only a small percenta ..read more

August 2017 I recently had my routine CT scan, and since I'm now allergic to CT scan contrast I had to do a prep which included prednisone and benadryl before the scan. The scan went fine and I didn't have any of the hives that I've had from the contrast previously. A few days later I received my results, no evidence of active disease from the neck down! While this is great news, I was still not completely in the clear. What this means is that there is a spot behind my scapula that the radiologist could not identify. It's a spot that previously lit up on my pet scan, but now it doesn't seem to ..read more

July 2017 It's been two months since my brain tumor hemorrhage and emergency craniotomy and things are going well. About two weeks after my surgery I had an intense immune response to the  immunotherapy with a full body rash. It was very red, itchy and painful! I was put on Prednisone for three weeks and had to skip one treatment of Opdivo. Prednisone is a rough drug! I had three weeks of barely any sleep and blurred vision from it. It did provide me a great amount of energy which was a nice change!  As far as I understand, having an immune response like this is a good thing, it mea ..read more

May 2017 I posted this on my personal Facebook page on May 11th, which was the day Bob Marley died from melanoma. I was surprised by the amount of people that were unaware that melanoma was the cause of his death, so I thought I would share it here as well. On this day in 1981 Bob Marley died of melanoma. He was only 36 years old and he noticed his melanoma for the first time in 1977 underneath his big toenail. The first doctor that he consulted told him that it was a bruise, likely from his soccer playing. It began to look worse, so Marley consulted another doctor who did a biopsy of the tis ..read more

April-May, 2017 If you haven't already been overwhelmed by my story, this may be the post to do it! It has definitely been overwhelming to me. The week before we were due to leave for Mexico I had a brain MRI with some bad news. Two of the brain lesions we had radiated before were larger, and there was one new one. I was still in tears when we got home from my doctor appointment and didn't even have time to take my shoes off before my radiation doctor was calling. She said we needed to radiate those spots and she was willing to do it the following morning. The best thing for easing anxiety is ..read more

April 4, 2017 Lately I've had several people get a hold of me and ask how I've been doing with my new treatment, which made me realize I haven't updated any of you since I started the Opdivo/ Yervoy combo.  I started the treatment on February 16th and the next day I had a low grade fever, body aches and chills so bad they made me shake. I was also exhausted and having horrible headaches. This went on for about two weeks after the first and second infusion which was three weeks later. During the first two infusions I was also still taking my previous medications Tafinlar and Mekinist. Th ..read more