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 

Bob Marley

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 tissue and determined it was melanoma. The recommendation from the doctor was to amputate his toe in order to remove all of the melanoma cells and increase his chance of survival. Marley chose not to do this and did well for a few years without any medical intervention. In 1980 while in NY for a concert, Marley collapsed while jogging. He was taken to the hospital and tests revealed his melanoma had spread to his brain, lungs and stomach. Marley did not believe in western medicine and chose not to follow the treatment plan of his U.S. doctors. Instead he went to Germany for alternative treatments which included exercise, ozone injections and vitamins. Not surprisingly Marley's condition continued to worsen, and he charted a plane to fly home to die in Jamaica.While in flight Marley's condition got so bad that the flight was diverted to Miami where he was admitted to the hospital and passed away. He never made it back home to Jamaica. He is an excellent example that people with darker skin can get melanoma and it is often in places that do not get much sun exposure like in the mouth, on the tongue, and on the palms of the hands or underneath toenails.

On the subject of Bob Marley I wanted to share this also. I'm the type of person the believes in things happening for a reason and things being meant to be. We bought our first home last fall and struggled a lot with the decision to buy due to the state of my health. We were ready to buy, but at the same time unsure about what the future would bring us. We chose to buy something that Corey could easily afford on his own if I weren't able to work or provide an income. Of course this meant we weren't able to buy the dream home we were hoping for once we had two strong incomes.

When we found our home we walked through once and immediately made a verbal offer. (The seller was home when we viewed). We absolutely fell in love with it. After we got the keys and the seller had moved out I went back to walk through the house by myself, and I noticed this decal on the wall in the guest bedroom for the first time. I think it was covered when we viewed the house... knowing Bob Marley's story and the message itself gave me the strangest feeling. It gave me reassurance that this home, right now was where we were meant to be.

This is the writing that will remain on the wall.

Gamma Knife #4, Mexico and Brain Surgery

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 to get things taken care of asap! I didn't even have time to let the bad news settle with me before I was taking care of the issue.  I've been so blessed with amazing doctors that realize the urgency of my situation. I had gamma knife radiation again (for the 4th time) and it was fairly uneventful. I asked the gamma knife nurse what is the most number of times they have treated someone... and he said 5. I'm almost to the MOST amount of sessions that gamma knife center has ever treated someone. Not really the award I'm going for. But this radiation is keeping me going. It's extending my life and keeping my brain clear-ish so that I can continue to live and enjoy my life. I would do this treatment every week if it meant I would stay alive.

The next week we were set to leave on vacation. I got clearance from my oncologist and my neurosurgeon to leave the country, although they weren't excited about the idea. My neurosurgeon sent me with a prescription of dexamethasone, a strong steroid just in case I have swelling from the gamma knife. Thankfully I didn't have any problems or pain while on our vacation.

Our trip was amazing! We flew to Cancun, and then traveled about 40 minutes south to Playa Del Carmen. This was our second trip to Playa, and it was just as great as we remembered. We stayed at an all inclusive resort and went zip-lining over the jungle.

The day after we returned from Mexico I had a horrible headache that woke me up in my sleep and brought me to tears. I also noticed that I had slight vision loss in my left peripheral vision. Very slight, but enough to scare me. The next morning I called my neurosurgeon and he sent me for an urgent MRI that evening. The next day I was at work when my neurosurgeon called me himself. He said that the MRI showed a cyst had formed around one of the lesions that we radiated, and that this is a rare complication of gamma knife radiation. He told me I needed to have brain surgery to remove the cyst tomorrow morning! He wanted me to go home after work, pack a bag and head to the hospital that night so I would be ready for surgery first thing the next morning. This is not the call you want to get during your work day. I was able to keep it together for the next few hours until my work day was done.
When we checked in that night they had a room ready for me on the neurology floor. I didn't really sleep that night, and my surgery ended up getting pushed to late afternoon. As the nurses were prepping me for surgery my neurosurgeon came in to talk about the surgery.  He talked about the risks involved with the surgery. I would not get back any vision I had lost... and there was a large possibility I would lose even more vision from the surgery itself. The lesion was right in the middle of my visual cortex, which is a dangerous place to be. I thought about how life would be, I may not be able to practice dental hygiene if I have more vision loss... would I be able to drive? so many questions and worries were going through my head that it brought tears to my eyes, not to mention the fact that this is CANCER, and these brain lesions don't seem to easing up anytime soon.

When I woke up from surgery the first thing I noticed was that I could see my nurse who was standing to my left. I could SEE her. I could see everything perfectly! I had no additional vision loss, and the vision loss I had before was gone. I could see everything clearly. I remember thanking God for the surgery going well, and for keeping my vision.

When I was able to see Corey after surgery he informed me that he had talked to my doctor right after surgery and it turned out that once he had opened me up he saw there was no cyst. Instead there was blood around the dying tumor. It had bled, which was causing my extreme headaches and vision loss. He let the blood drain and removed the dying tumor while he was in there. This was good news, even though it doesn't sound like it. He had less area to remove, and didn't have to mess around too much in there and injure my visual cortex. My post op CT scan looked great. No tumor, no cyst, no blood. It was as if it never happened. God is so good. I can't express the feeling of waking up from surgery and realizing everything went better than expected. I'm so grateful. To my doctor, to God, and to my husband for being by my side.

Just a Quick Update

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. Those of you that know melanoma medication know that this is an arsenal of very powerful medications! Any one of these medications alone can cause very severe complications, so you can imagine how I was feeling while taking all four. I'm finally off the Taf/Mek and this third infusion went a lot better! It was five days ago, and I've felt great since then. I have the infamous "ipi rash" on my ankles and very slightly on my hands, which doesn't really itch or bother me. Some say that the rash is a sign the meds are working... but I don't know how much data there is to support that claim. 

In March I had a follow up MRI of my shoulder, where that one little tumor is hanging out. It was too soon to see if the meds were working yet, but the goal of the MRI was to see if the tumor had grown to a size where it was necessary to remove it. I've never had any pain from this tumor or even felt it! I forget it's there most of the time. Well the MRI showed that the spot is exactly the same size as it was about six weeks ago when we first found it. This is a good sign, it can mean that the meds are already kicking in and slowing down or stopping the growth. Now we just need it to start KILLING it. I'm hoping on my next scan it will be undetectable. I'm still having headaches so I'll be having a brain MRI soon. It's possible it's a side effect from treatment, but we just want to be sure. 

I know that most of what I write about it scary and unsettling, but please remember that my life outside of the cancer is amazing. I'm in love with my life (almost) every aspect of it. Life in between doctor visits feels very normal and blessed. I'm working in a career I fought hard to achieve, my husband is adoringly sweet and supportive, and life is overall very very good! We have a vacation planned soon for Mexico, and we plan on escaping reality for a while and getting some much needed rest and relaxation.

I was feeling good enough to make it out for a nice hike this weekend. The sun was very bright so we were squinting heavily =)

Gamma Knife #3 and Pet Scan Results

January 2017

After letting the latest news sink in a little I'm feeling much better. I had gamma knife radiation on December 29th at which they found four very small brain lesions. We zapped all four and I'm hoping and praying that they are shrinking or gone already. In a couple more weeks I'll have a follow up MRI to make sure.

Around the same time of the brain issues I started having a really intense pain in my hip. It was pretty painful to walk for about three weeks so my doctor decided to order an MRI of my spine and hip just to make sure nothing was going on there. The MRI showed two things, first a herniated disc in my lower spine... and also an area in my left pelvic bone which lit up but was impossible to tell if it was melanoma or something else. This prompted a pet scan order. Pet scans are very good at detecting even a very small amount of cancer.

Now comes the interesting part. My pet scan lit up like crazy! Several spots throughout my back and side, groin and scapula. My doctor looked very solemn and said it was time to move to the next treatment option which we have been discussing. I asked him to show me where the spots were on my body. Up until this I have been able to feel almost every single tumor I've had, especially the subcutaneous ones (the ones under the skin in the fatty tissue). I was in disbelief that I could have that many and not feel any of them. He lifted up my shirt to feel the spots that lit up and realized they were exactly where my tattoos are. I have two rather large tattoos on my back and side which I got about twelve years ago. I have noticed that they are a little swollen and inflamed but didn't think very much of it. They have been doing this off and on for the last year, ever since I tried the immunotherapy ipilimumab. Well it turns out that the ipilimumab has given me an allergic reaction to the red ink in my tattoos and is causing pain and inflammation, and pet scans pick up areas of severe inflammation. Lucky for me the major areas along my back and side were lighting up from my tattoos and not from cancer!

The lymph node in my groin also lit up but is not palpable. It could possibly be full of tattoo ink from my body trying to dissolve and get rid of my tattoos. This leaves only the spot in my scapula with no explanation. My doctor can't really tell if it's a spot of melanoma or not, and since this may be the only spot with no explanation we decided to hold off on starting the new treatment and have an MRI of the scapula to tell for sure what it is. Last year I did have a spot of melanoma in that scapula that was surgically removed so it's very possible that it's back in the bone or in the marrow space. I'm keeping my fingers crossed for now and trying my best to stay positive.

My hip did not light up at all, which leads us to believe that the severe pain I've been having in my hip is from the herniated disc. The pain is completely gone now and I'm feeling much better!

This weekend my husband and I attended a seminar in Portland and were able to listen to some of the best melanoma specialists in the region speak about the newest treatment, and what's happening in clinical trials. It was a very uplifting event that I was grateful to be a part of. It gives me hope to see that so many amazing minds are working to find successful treatments for fighters like myself. There's a lot of really big things happening in the world of melanoma and I am determined to hold on long enough for something to come along that will help me. I have an incredible support system of friends and family and an incredible faith that will keep me going until that time comes. I've said it before, but the hardest part of this whole journey is learning to have patience, and faith. Every day is a struggle with the unknown future. All I can do is live in the present and never take a single day for granted.

Pet Scan Attire