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.