8 Week MRI Results

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 coast and stayed at my favorite lodge. I had a nice relaxing massage and lots of rest!

Two months post surgery and scan results

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 woke up though, and I was fine.... except I could't talk. My brain was forming the words but they wouldn't come out correctly. This is the weirdest feeling, and I've only ever seen this happen on Grey's Anatomy. I was living out an episode in real life. I also realized my left hand and left leg were numb.  I spent a total of 13 days in the hospital, finally being discharged with my own at home physical therapist, home nurse, and a speech therapist.

Jan 26 2018

Not only did I go through all of after the surgery, afterwards I was told the samples were very positive, in fact the melanoma is sprinkled all throughout my meninges in my brain. My prognosis is now very, very poor.
I'm home now and feeling better, it's been two months since my surgery. I can walk and talk almost normal.

Just recently it was scan day which always gets me so nervous, but even worse today. It will tell us if the new chemo I've started is working in the brain or not. This chemo, Tamodar, is known for not working for melanoma, but we know for brain cancer it has the ability to cross the blood brain barrier so we are giving it a try.

Corey took me to my appointment. I always have him come along when it's a scan appointment. I get so nervous on any scan result day. I was getting my blood drawn, which we do every week, and my doctor walked by and said "you're scans  look great".  He said he didn't even need me that day. I asked him to elaborate. He said "This may be the best results I've seen from this drug." and "We've almost kicked it, all that was there is almost completely gone".  I was so surprised I just started laughing and thanked GOD. I'm not one of those that cries when they're happy. The hardest part of this right now is not being able to work as a dental hygienist because I still have numbness in my left hand, and not being able to drive and carry on regular life.

Surgery and updates...

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 that the cancer has spread to her meninges/cerebrospinal fluid (the initial biopsy they had thought it hadn't).

She's slowly regained her speech and feeling in her face. But her balance and strength isn't good enough to walk on her own. It's difficult for her to coordinate texting, so if she doesn't get back to you, that's why. She's spent 13 of the past 15 days in the hospital, but is finally ready to discharge.

The prognosis of leptomeningeal melanoma is not good, but Jen is always staying positive.
Our current treatment plan is for her start a chemotherapy called Temodar (Temozolomide), which is a pill she'd take at home. Temodar is chemo that has the ability to cross the blood-brain barrier (the barrier separating the blood stream from the cerebrospinal fluid).

There is one clinical trial we know of that would accept patients who have leptomeningeal melanoma. This trial is at M.D. Anderson in Houston, Texas. Currently she would not qualify because she is on too high of a steroid dose to control her brain swelling and symptoms. She also cannot be on another chemotherapy or treatment in order to participate in this trial. Her hope would be to participate in that trial if she is able to taper off the steroids quite a bit more.

Keep Jen in your thoughts and prayers, she is a warrior!

Very generous chest full of gifts from all my coworkers at Gentle Dental, thank you!

Scans, steroids and Baptism!

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 was a pretty easy procedure overall. The results showed NO cancer cells in the spinal fluid, which is wonderful news, but a lot of the other measurable aspects were abnormal, so in a way it was inconclusive. Since I starting feeling worse we decided to try steroids to see if those help. My nurses gave me IV steroids, and hydration. While I was at the doctors receiving those I also had an episode that I'm still a little unsure about. I was sitting in the chair talking with my mother in law, and my speech got funny, and my lip started to droop while I talked. I also noticed the tips of my fingers on my left hand became numb. It only happened for a few minutes, but total it did this three times. The nurses called my doctor who was in the operating room to tell him, and they had me sit there for a while and be monitored. Since starting the steroids this hasn't happened again, and because of the fact that I felt better the next day after starting the steroids it makes us believe I may have some kind of auto immune issue happening in my brain, and those episodes may have been small strokes or  seizures. Whatever they were, they gone now, and hopefully for good.

Today I received results from my latest CT scan of the neck down. There's one pesky small tumor near my scapula, which has been there for many months, and is actually getting smaller! (5mm), and nothing new. Somewhere along the line having just one tumor has become great news for me, when at one time it would really upset me. Family and friends were upset with the news of there still being one. Don't be sad about this, I'm actually not worried about it. One tumor that is shrinking is an okay thing in my eyes. Now we just need to get my brain to cooperate!

Some of the good news from this month is that my husband Corey received a job offer here in town. He's been driving over forty minutes to work every day for over three years. I know to people that live in a city 45 minutes isn't a long commute at all with city traffic, but where we live he was driving country back roads 45 minutes each day both ways and it was taking a toll on him. Now he'll be about ten minutes away down the freeway. I'm really excited for him and proud of him.

Another thing that is exciting for me was that I was baptized this weekend. I've had this on my list to do for many years and the time was finally right. I was baptized by my good friend Bree who has taught me so much throughout my cancer journey. She's been there through each step of the way and urged me to turn to Jesus with each hurdle. It felt good to officially accept Jesus in my life in front of my family. It was a very special event that I'll remember forever.

Hugs

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 percentage of cancer patients have the cancer spread to the meninges of the brain, and the cerebral spinal fluid- I think around 5%. Prognosis is very poor, and it's very hard to treat.

Nausea, stiff neck and headaches sent me to be evaluated, my brain MRI showed very clearly where the cancer was located. There was no question about it. My only question for my doctor was of course what can we do? We  already had a game plan for if I were to have disease progression while on Opdivo. I immediately started back on Tafinlar and Mekinist, and we will also continue Opdivo until we can find a clinical trial that will accept me. My doctor is getting in touch with doctors in LA and in Portland. Of course I'm hoping to be treated in Portland where we have the support of friends and family, but I will go anywhere that I may need to. At the end of the week we received a call from Dr. Taylor at OHSU. There are no clinical trials there that I qualify for. Next step is Providence, and then I'll have to look outside the state.

One thing that I love about my oncologist is that every since I've been stage IV, he never has given  me a time frame or an expiration date. He has never once said "six to twelve months" or anything else implying my time might be coming to an end, and I wouldn't have it any other way. I don't know whether he does this to keep me from becoming too upset, or that he knows I do SO much research I already know how serious this is and what my prognosis looks like. Either way, it doesn't need to be voiced to me. Only God knows when my expiration date is. Also, there's been studies that show that if you tell a patient they
 are dying, they do remarkably worse than if never told that. I believe it's largely psychological.

September 12th 2017

Today I met with McDreamy, (neurosurgeon) to go over those same scan results. He again told me the bad news. No radiation or surgery will help this condition. He officially told me he can't help me with this situation, and good luck. He also gave me a hug.. Hug number two by a doctor in one week's time.  He agreed that a clinical trial is the best way to go, and fast.

September 15th 2017

Today I saw my primary physician for an unrelated matter. Once I got him caught up on things he - you guessed it, hugged me! Hugs from new people that don't normally hug me make me feel like they feel I'm becoming out of options and I'm going to start going down hill.  Although it may look that way to them, I have no intention of going anytime soon. Somehow I still have confidence about my disease, and hope. God is in control.

CT Scan Results

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 be lighting up with contrast. So it could be dead cancer cells... or scar tissue from a previous surgery I had on my scapula. We don't really know. Also I used the words "from the neck down" purposely. I had felt a small pea sized bump on my scalp not far from where my primary melanoma was. I showed this to my oncologist who thought it was melanoma for sure, then I showed it to McDreamy (my neurosurgeon) who thought it could be melanoma or could be a sebaceous cyst, and I also showed it to my dermatologist who thought it was most likely a cyst. But of course me being me... none of them were willing to bet money on it. When it comes to my situation, we've all learned that anything is possible. My oncologist and I decided that the best thing would be to remove and biopsy it. The pathology came back that it WAS indeed melanoma.

Since the rest of my body scan was clear we are going to stay on my current treatment of opdivo every two weeks indefinitely, and keep a close eye on things. I had surgery to remove a wide margin around where the tumor was to make sure all cells were removed. It's frustrating to have my treatment working, but to have one new spot appear like this. It reinforces the fact that melanoma is so unpredictable. I'm very grateful that the rest of my scan is clear and it's been six months now since I've started the drug combination of opdivo and yervoy. God has been so good to me and blessed me in so many ways. I have no doubt that He has intervened in my life, and that there's a reason I'm still here after all I've been through.

A couple weekends ago we celebrated my husbands 31st birthday in Bandon Oregon. We stayed right on the beach and had an amazing time! Over the next few weeks we'll be celebrating a good friends wedding. Corey's looking forward to seeing old friends he hasn't seen in several years. We have so much to look forward to and be thankful for. Life is good.

In Bandon Oregon, A little bit windy! 

Two Months Post Craniotomy

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 means we accomplished ramping up my immune system which is the whole point of the treatment I'm on. After I tapered off the steroids I was able to continue with the Opdivo, and I've had two more infusions without any problems.

The start of my horrible Opdivo rash!

My little visitor while in the hospital, Bree and the boys came to see me

Another thing the immunotherapy has done for me is give me allergies to things I've never been allergic to. When I was in the hospital for my brain surgery the nurse gave me a headache medicine call Fioricet, which is a combination of caffeine, acetaminophen, and butalbital. I had some leftover at home after my surgery and decided to take one for a headache about two weeks later and had a horrible allergic reaction! A lot of time you discover you're allergic to something the second time you are exposed to it. I had to miss work for a couple days and rest. So frustrating! So I have to add this to my list of new allergies which also includes CT scan contrast.

Yesterday I had an MRI to check on the lesions that we radiated and removed, and it looked great! NO new lesions, and all of the others were either smaller or gone, my doctor even said it looked "fantastic". In two months we will scan again. God is so good.

Flowers from a dear friend