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.