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 

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 

Recent scan results, and picking myself up off the ground

December 16, 2016

My heart feels like it has been shattered into tiny pieces. Over the last couple days I've been debating sharing these scan results with everyone. This journey has felt like a roller-coaster with highs and lows, and I didn't see the point in pulling everyone along for the ride. And then today I realized those who care enough to read this blog want to know it all. They want to celebrate with me, laugh and cry with me, and I felt I needed to be honest with my writing for them.

My brain MRI from last week showed I have TWO new lesions in my brain. My first thoughts were of frustration and defeat, but it's soaked in a little more now. Now I am just scared. I'm terrified. Not of these two tiny intruders, but of the bigger picture. What does this MEAN? Are my medications no longer working? The rest of my body is clear so there is no doubt they are still partially working. But for some reason they have decided to let down their guard and let these melanoma cells set up camp in my brain. I'm confident a course of gamma knife radiation will kill these cells, but how many more will there be? I'm scared of what this means in the long run... or near future. I'm scared that God hasn't been hearing my prayers, and I'm scared that I'm even questioning that.

But I feel fantastic. I feel healthy and happy and kind of like this is all a bad dream. Almost every morning back in 2015 I woke up and remembered I had cancer, and I wanted to cry. I only just recently got to the point where I could wake up in the morning, remember my whole situation and feel happiness instead of fear. I'm trying my hardest to set aside my fear. I'm handing it to God, and to my doctors, and I'm choosing to continue moving forward with life. Like I've said before, as long as I'm not in pain, the cancer is not winning.

I hate feeling vulnerable. I hate others viewing me as weak, or sick. But with that being said I love all of the support and care I've been getting from my friends and family, It motivates me and keeps me going, and if it gets to the point where I need help from others, I won't hesitate to ask for it. If you are someone who believes in the power of prayer please keep me in your thoughts. I promise there will be good news to share again soon, but for now I just need your prayers.

This picture is from my first gamma knife session. But the message still applies...

Recent Gamma Knife Results, and Full Scan Results

August 2016

Six weeks after my gamma knife session I had a follow up MRI. The 5 mm spot measured exactly the same as it did before the radiation. Sometimes it can take time to see results after gamma knife, and it wasn't any bigger so I was very happy with the MRI results at this point. It's still possible that this spot is NOT cancer, and is a blood vessel deformity. I'm choosing to believe that's what it is, and the fact that it didn't shrink after radiation makes me more confident it is not cancer.

September 2016

The last few weeks I have been having eye issues. My right eye had a fuzzy blind spot and a dull ache around the eye. My ophthalmologist did many tests and took pictures and determined that I have a swollen optic nerve (papilledema). He was very concerned because the main cause of this is increased intracranial pressure from something like a tumor in the brain. I told him that I had an MRI last month which didn't show anything new. He recommended we rush and do another MRI. I was also due for all of my other scans at this time so we scheduled them all asap. During my scan appointment I explained my symptoms to my MRI tech (whom I love!). She told me that either my insurance denied the brain MRI because I just had one... or my doctor didn't order a brain MRI, either way she was only authorized to perform an orbital MRI as well as my body scans. I told her I really was hoping for a brain MRI because an orbital MRI would show that I have a swollen optic nerve... which we already know, but it most likely won't show the cause of it. From what I was told, only a brain MRI would do that. She spoke with the radiologist on the phone immediately and he agreed an MRI of the brain was absolutely necessary to rule out any new brain tumors. He okay'd her to perform the brain MRI at no charge to me, which I am so grateful for! The good thing about being in a small town and going to small centers like this is that they begin to know you and your case personally, you aren't just a name or a patient ID number.

On September 7th I got the news that my body CT was clear, my orbital MRI was clear, and the only thing showing on my brain MRI was the same 5 mm spot that we have radiated. There was nothing new anywhere! That spot was once again the same size which makes me so hopeful that it's nothing to worry about. And even if it is something... it's not growing! Which means that my medication at this point is still working.

Unfortunately I've been back to my ophthalmologist again recently and I still have a swollen optic nerve with no explanation. There are no reports of my medications causing this, although they are so new it is possible. He's going to monitor me closely and see if we can figure it out. Once again, this disease is testing my patience like I never knew possible. We decided to push all of this out of our immediate thoughts, we packed up, and went to Hawaii.

My husband and I, hiking

We visited the beach we got married on four years ago! 

Gamma Knife Round Two

June 2016

It's been a confusing couple weeks! There was a tiny spot on my latest MRI that was concerning. It was a spot that was there since last August, but we were just watching because it didn't seem to be growing at all over the past ten months leaving us to believe it was benign, a blood vessel abnormality or something like that. Well this last scan showed that it is now a little bigger, and when you have a history of cancer you have to assume it's a tumor. I asked my doctor to get a second opinion from a different radiologist who also thought it was a tumor, because of the way it enhanced on the image. This spot is so tiny, only 5 mm, but is located deep in an area that can't be surgically removed. Our only treatment option is to try gamma knife radiation. Last time I had gamma knife (the huge tumor that I thought we removed surgically, but then it was back and BIGGER than before) worked beautifully, and that spot is no longer visible on my MRI, so I'm feeling very confident it will work again.

I had the procedure on Thursday June 9th, with the same set of doctor's. My radiation oncologist, neurosurgeon, and physicist all remembered me (It's only been ten months since last time), and we joked about how we have to stop meeting like this. The whole ordeal took half the day, but the actual radiation time was only 18 minutes! It was relatively easy, the hardest part was the screws they insert into your skull that hold your head still during the procedure. I went home to watch movies with Corey for the rest of the day.

In six weeks we will do a follow up MRI to see if the treatment worked. We aren't sure what this means as far as my medication goes. This may mean that my treatment is beginning to no longer work... or possibly this one tumor is just not responding, but the treatment is still working over all. At this point we are choosing to watch and wait, and currently stay on my medication. This whole process has taught me more patience than I ever imagined possible.

Just after gamma knife radiation

No End In Sight

Three weeks after my eye surgery I was healing well and ready to discuss returning to school with my instructor. We had a meeting in her office where we went over my options. I could take the rest of the year off and return next September to finish with the class below me, or I could try to push through. I had a lot of make-up work to do, and I would have to work really hard to be ready for the board exams coming up. I chose to push through and graduate this year for two reasons. One was because it gave me something healthy and positive to focus my energy on, and the other reason was because honestly, I had no idea what things would look like in a year. Would I still be here? Would I be sick and not able to ever return. In my eyes if I was going to become a hygienist it had to be now.

I left her office and walked to my car feeling confident about my decision. I sat in the drivers seat and felt something painful in my lower back as I leaned into the seat. It felt like a painful marble sized lump under the skin. You have got to be kidding me! I called my doctor and went right over for a needle biopsy, but both him and I knew what it was.

A few days later we received the results of the biopsy. It was indeed more melanoma. We decided it was appropriate to do another PET scan, even though my last one was only just over a month ago. This time the scan showed three more tumors. One in my lower back, one in my lower abdomen, and one in the tip of my scapula (inside the bone).

Yervoy- April-June 2015

After much deliberation we decided to return to the operating room to remove all three tumors. We knew that this would not end the problem, but what it would do is buy me some time. After surgery I would start an immunotherapy called Ipilimumab (Yervoy). At this point in time, Yervoy was the only drug approved for first line stage IV melanoma. Meaning you have to try this drug first before you can move on to the drugs with better success rates.

Yervoy was administered through an IV in my arm once every three weeks for a total of four doses. A lot of times this treatment comes with very dangerous side effects, so they monitored me very carefully.  During this treatment I felt GREAT! I was working out again, back at school making up everything I had missed and even taking my state and regional board exams (which I passed!). I attended my class pinning ceremony, and celebrated with all of my friends.

Dental Hygiene pinning ceremony

At the winery celebrating

My sweet husband Corey, my person, my rock.

The three months of treatment flew by and before I knew it the 4th of July was here. I had plans with friends, but spent the whole weekend in bed instead. I was feeling so sick on the holiday that I had my husband call my oncologist at 6 am on the 4th of July (sorry doc!) We described the issues to my doctor and he agreed it was time to go to the emergency room. Well I was definitely ill. My CT scan and MRI showed numerous tumors throughout my abdomen and back (roughly 8 or 10), ascites, which was most likely where my abdomen pain was coming from, and a tumor in my brain. It was safe to say my treatment was NOT working.

The new game plan was to have a craniotomy to remove the brain tumor, followed by gamma knife radiation at the site to kill any remainder cells so that the tumor does not grow back. Immediately following my surgery I would begin my next treatment; a drug combination called Tafinlar and Mekinist. These drugs are only useful if you have a certain gene mutation in your melanoma (B-RAF), which I had. These drugs can work amazingly, but generally stop working for the majority of people. The melanoma learns to mutate, and grow around the medication. The average amount of time before that happens is 10 months, but can be up to several years (still not long enough).

Tafinlar and Mekinist

Brain Surgery and Gamma Knife- August 2015

Brain surgery was a piece of cake! The easiest surgery I've had so far. The brain tumor was only 10 mm and was close to the surface, with no inflammation. The incision on my scalp was only about an inch long. I stayed the night in the hospital so they could monitor me and went home early the next morning.

 My Neurosurgeon, we will call him Dr. Mcdreamy (yes I'm a huge Grey's Anatomy fan and I believe if Izzy Stevens can beat late stage melanoma with only a 5% chance of survival then I can too!), most likely wasn't able to remove all of the cancer cells, or there was a satellite tumor right next to the original. When I returned two weeks later for my gamma knife treatment we did a new MRI, and some of my tumor was not only still there, but had grown and was now BIGGER than it was before surgery. This information was extremely disappointing. It made me feel that the brain surgery and everything I had just went through was totally unnecessary.  For the first time throughout this journey I felt defeated. The tumor was now 19 mm. They performed the gamma knife treatment as planned, just on a larger area.

After the rough morning of radiation I told my husband that we needed to get out of town. We decided to head to Bend the next morning and spend the weekend. We stopped in the Cascades on the way and did some hiking. The outdoors has always been an escape and stress reliever for me, and today was no different. Although I probably should have been at home resting, we spent the morning hiking around the trees and amazing waterfalls.

The incision site from my brain surgery

The good news is that I had a follow-up MRI just six weeks after the gamma knife and it showed my tumor was drastically smaller! I've had several MRI's since then (four I think), and now my brain is showing completely clear. The tumor is gone! All of my CT scans since then have been clear as well which means the combo therapy pills are working.

Just after hearing the news my brain tumor was back, just before my gamma knife procedure. Topical anesthesia on my forehead.

      

The Calm and Then the Storm

I finished that year of Interferon treatment in March of 2012. The next few years were AMAZING. I married my boyfriend Corey in August 2012 on a beach in Maui under a blue moon. Life couldn't possibly be any better. We had this incredible "life plan" since him and I are both compulsive planners. He would go to school to be a respiratory therapist while I worked full time and support us, and as soon as he graduated I would begin my program for dental hygiene while he worked full time. This would minimize our debt and student loan amount. Toward the end of my schooling we would start planning our family, I would work part time at my dental office and we would purchase our first home shortly after, (with a beautiful nursery). After all, I had now been cancer free for four years! I was still having CT scans every six month of my chest, abdomen and pelvis, and seeing my oncologist every 3 months. But you know what they say... if you want to hear God laugh tell him your plans.

And then it begins... 

In February 2015 things were going great. Our "life plan" was right on track. I was in great shape and running nearly every day, as well as acing all of my dental hygiene courses. I was set to graduate in 4 months and already had a job waiting for me. I had an appointment with my oncologist to review my latest scan results, and I was going to share with him our news that we will have to postpone our next round of scans in six months because we were finally ready to start a family!

The appointment was scheduled right before I had to be at clinic to see a patient. I was dressed in my scrubs and hoping for a quick visit so I could make it to school on time. My oncologist was out of town so the appointment was with his physician assistant. I'll never forget the way she told me the news, "we need to talk about your scans". There would be no pleasant small talk. There would be no talk about starting a family. Instead the next 20 minutes were spent going over the results of my CT scan. "Several nodules in the lungs"... "the doctor has a plan". This was the closest I have ever come to passing out. My eyes started going dark and I could barely breathe. She had to run out of the room and get me some water. My first thoughts were that this had to be a mistake... did they mix up my scan with some else's? I asked her if they were positive it was melanoma and she said they were. I would have a full body PET scan, and meet with my doctor when he returned.

Of course I was by myself for this appointment (which I preferred). I messaged my instructor and said I wouldn't be in class that day, drove straight home, and cried.

I didn't tell my friends or family until after my PET scan results since we didn't know exactly what we were dealing with. The PET scan showed that there were only two melanoma tumors, one in the tip of each lung. My doctors plan was simple, two separate lung resection surgeries to remove the tumors and the tips of each lung. Since it metastasized to only one organ there was a good chance that  it was done, and would stop there. I was actually relieved after that appointment with him, I felt confident and optimistic. No systemic treatment was needed at this time and we could go back to watching and waiting.

First Lung Resection- February 2015

My first surgery went very smoothly. I had a couple incisions on my side and back from the surgery, and a chest tube draining fluids from my lung. (Removing that chest tube was the most painful part of the ordeal!). My surgery was Thursday and I was back in clinic Monday morning seeing patients.

Second Lung Resection- March 2015

This surgery was a little bit more complicated. He had to remove a larger piece of lung, and then I had a leak in my lung after surgery which prevented me from going home for two days. Recovery was a little more rough from this one as well, walking was difficult and I felt like I could barely breathe for a few weeks.

Remission (but not really) 

Throughout these lung surgeries I had been having some issues with my vision. I would see a dark shadow in the upper corner of my left eye that was persistent, and my eye was bloodshot. I went to my ophthalmologist for an eye exam and nothing out of the ordinary was found. After telling my oncologist about my symptoms he ordered a brain and orbital MRI. Everything came back clear. I continued to heal from my lung surgeries and visited my oncologist about two weeks later to have my stitches removed. It was this appointment that declared me officially NED, (no evidence of disease). I  then mentioned to him that I was still having the visual disturbances, and he looked closely at my eye. He told me to call my ophthalmologist again because something was obviously going on with my eye. I called my eye doctor as soon as I left my oncologists office and they had me drive right over. (Thankfully when you're a stage IV melanoma patient ALL of your doctors take you very seriously). They did another eye exam, except this time they saw something happening. It looked like something was pushing into my eye from the side, and causing an indentation. He immediately got on the phone with a retina specialist who agreed to see me for an eye ultra sound the next morning.

It seems my NED status was a false alarm. After having an eye ultrasound a tumor measuring 22 mm was found in the medial rectus muscle of my left eye. (Thank you Jenoa for accompanying me to the worst appointment of my life, since Corey couldn't make it.) During the appointment treatment options were discussed including possibly having to remove my entire eye! The retina specialist immediately called my oncologist, and an ocular surgeon in Portland to schedule my appointment as soon as possible.

Honestly, learning about the tumor in my eye muscle was worse than learning about the lung tumors and my initial stage IV diagnosis. I think it was because of all that I had just gone through with my lungs, and then thinking it was gone... and also the fact that this means there would most likely be more tumors... many more.

Eye muscle resection surgery- March 2015

The orbital surgeon that I was scheduled with is one of the top in the country! He thinks he can remove the muscle which contains the tumor without removing my eye, which is amazing news. This is an outpatient procedure at Casey Eye Institute in Portland, so after we stay the night with my in-laws in Newberg. This was a ROUGH surgery!! Far worse than my lung surgeries or my neck dissection back in 2011. Every time I blinked or moved my eyes the pain was excruciating. I had a swollen black eye for several weeks. A week later I received a phone call from Dr. Ng himself (my eye surgeon), saying that the pathology report came back and it seems that he wasn't able to get all the cancer cells. The cells had grown through the muscle and were loose in my eye socket. I hung up the phone with him and once again, cried.

The Beginning

I found this blog that I started back in 2011 which got pushed aside after just a one entry so I thought I'd update it a little and continue, because SO MUCH has happened since then. I'm not a writer by any means, so please bare with me!


September 2010,
I noticed an area on my scalp that felt different. A raised area that felt like a mosquito bite that itched and tingled. I made an appointment right away to have it looked at by a dermatologist. I was really nervous at that appointment and scared I would here the word "cancer". The physician assistant took one look at it and said it was nothing to worry about... however she wasn't really sure what it was... some type of mole or birthmark? She called the Dermatologist in and he also looked and confirmed it was nothing to worry about. They even laughed a little when they saw how relieved I was. They made the comment "what did you think it was.... cancer?" I left relieved that day and pushed it out of my mind for three whole months.

December 2010,
The area on my scalp seemed to be getting slightly bigger.... and itched more... I felt like it just wasn't right. Something tells me to return to that dermatologist and have them biopsy and remove the spot. Still I'm not too concerned. After all, they had said it was NOT cancer....

Two days after my 26th birthday I get the call. The PA tells me it DID turn out to be Melanoma, and they were so surprised because it didn't look like it at all. They then sent me to a surgical Oncologist to have a consultation. I go to this appointment by myself. I still haven't told my family. I've always been the type to handle difficult situations on my own, and not depend on others. I was treating my cancer the same way, which looking back seems ridiculous. We schedule a CT scan, brain MRI, PET scan and chest x-ray. Along with many blood labs. I leave his office crying. Two days later I hear that everything came back clear! This means as far as we can tell the cancer has not spread to any of my organs.

January 2011,
My first surgery goes according to plan. A two hour surgery where he removed a large area around where the cancer was (he had to shave some of my hair) and place a skin graft over it that he took from my thigh. He also removed 2 lymph nodes from my neck to test for cancer. If it had traveled into my lymph system that's the first place it would go. More bad news. Yes in fact my sentinal lymph node contained a 2 mm cluster of cancerous melanocytes. The cancer had spread. Once again I left his office crying.

Ready for surgery! My very first time even being inside a hospital

February 2011,
My boyfriend gets me a kitten for Valentines Day and does so much to try to make me feel better. It's time to go back to the operating room. This time for a partial radical neck dissection. What was supposed to take two hours ends up taking four because my surgeon spends extra time avoiding and working around the nerve that gives feeling to my ear. Normally during this surgery the nerve is severed, and you have a permanently numb ear. The fact that he saw this nerve right away, and then took time and patience to work around it makes me very grateful. I have all feeling in my neck and ear. He made an incision from my ear to my collar bone and removed the lymph nodes to have them biopsied. All of the rest came back negative for cancer! He also placed a groshong catheter in my chest which they would use to administer my cancer treatment for the next month. The next 2 weeks were HORRIBLE. I could barely move my neck and there was so much pain. The scar was so ugly, and I had a six inch tube hanging from my chest. I could barely look in the mirror. I just wanted this to be over.

Back to the Doctor I go. We discuss statistics again. I don't enjoy hearing those numbers, but it's important to know the severity of my disease. In my case there is a 68% chance I will survive 10 years, (or something close to that, I don't exactly remember).  I leave his office, but this time I'm not crying. I now know all of the facts and what my challenges will include, and I'm determined to beat this.

March 2011,
I begin my Interferon treatment. It's like chemo but not as harsh. Interferons are made naturally by the body and help boost your immune system. The goal of this is to prevent or postpone the cancer from returning. The first month is hard. 5 days a week for 4 weeks I had to go to the cancer center and sit in a recliner in the chemo room. I was the youngest by far. I had all my hair, and a positive outlook. I'm determined to keep working full time. I want to work to keep my mind off everything as much as possible. So I work 8 hours and then go to my treatment. I'm so weak by the time I get home I go pretty much straight to bed. Walking up the stairs is a trying journey. One step at a time. I'd spend the night having cold sweats and chills, with body aches, just to wake up and do it all over again. They say if you stay active it helps keep the fatigue away, so I do. I run on the treadmill and even lift a little weights. Trying so hard to live a normal life. I want this tube out of my chest. It makes breathing hard. My boyfriend Corey is incredibly supportive. Four weeks pass, I survived the first month! That month would be the hardest since now it's an injection I will do myself three times a week. A lower dose. Good thing I'm not afraid of needles. I begin the injections and start to feel a little better. The fatigue is still there, and will be for the next nine months.

I'm now in month 5 and my hair is thinning a little bit which is very disappointing...after all it's the only thing I have to cover my neck scar...

One month of interferon injections

At this point I see my oncologist once a month and dermatologist every three months. Along with CT scan every 4 months. Life is beginning to return to normal. I pray a lot and I'm thankful for every day. I remember spending hours lying in bed wondering "why?" This of course is a ridiculous question because none of us know... God has a plan and although we might not understand the purpose at this moment, we must keep our faith.