Some of you have heard "here and there" of what's been going on... I though this would be an easy way to communicate to all of you at once and update you regarding the status of my eye....
The journey began in May of this year when a good friend of mine (who I am so thankful for - THANK YOU!) challenged me to the quest of finding out exactly what was up with my crazy left eye.
The journey began in May of this year when a good friend of mine (who I am so thankful for - THANK YOU!) challenged me to the quest of finding out exactly what was up with my crazy left eye.
If you've never seen me joke around and cover my right eye while saying something silly like "I can't see you! haha", then you're probably wondering what I'm talking about ;)
Here's the story.
Basically over the years I have experienced some vision loss in my left eye. And when I say vision loss, I'm not talking about the "normal" kind of vision loss that would require the simple fix of getting stylish new glasses. No. This was quite different. This was.... weird.
I'm sure many of you have stopped to play in one of those wavy mirrors. You know, the kind where when you position yourself just right and you can't help but laugh at how "silly" you look?! With a GIGANTIC brainiac forehead and an itty bitty nose, mouth and body! Well, when I covered my right eye, that's what I would see out of my left eye. Crazy huh?! Of course I was concerned and so was family so naturally I went in for a check up. One guy said I had a "freckle" in my eye and left it at that. Another mentioned scarring to the macula (the spot in the center of the retina responsible for detailed central vision). Someone else guessed it could be ocular histoplasmosis, which is basically scarring caused by inhaling dust that carries fungal spores - I know, how bizarre?!! Annnnd I left it at that for a few more years.
Once I took the second initiative to "dig deep" and find out what was really going on, that's when things got interesting. Not to mention, my vision had changed some too. Instead of seeing "wavy mirror" images, I could only see things in my peripheral vision. Everything I focused on was..... blank. The best way I know how to describe it is, its like rubbing your eye or looking into the sun and then looking at another object and you see blank spots. If I were to cover my right eye and look at your face, you could be sticking your tongue out at me and I wouldn't have the slightest idea!! lol
Here's how it went down....
Here's how it went down....
MAY 27th : The Journey Begins
I started with an Opthalmologist in South Jordan. After taking lots of pictures and using "extra strength" dilation drops - - literally, my eye was dilated for about a day and a half! *pic below* - - he was extremely puzzled by what he saw and referred me to a Retina Specialist.
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JUNE 13th: Fluorescein Aniography Test
I underwent a Fluorescein Aniography Test which is an eye test that uses a special dye (injected in to the bloodstream) and camera to look at the blood flow in the retina and choroid, the two layers in the back of the eye. That was interesting. I could tell once the dye had entered my eye because everything I looked at was florescent pink! So weird! He, too, was puzzled and called on his partner for a second opinion. They came up with two possible diagnoses of which they kindly and cautiously informed me of:
1. Osteoma: benign, bone-like tumor
2. Amelanotic Melanoma: non-pigmented (essentially colorless) cancerous tumor
Our next step occurred on
JULY 3rd: the Ultrasound
Yes. An ultrasound. It is exactly what I know that you are thinking it might be. An ultrasound that we've all heard of but we only really hear about when someone we know is pregnant. Yes. That kind of ultrasound .....only, it was on my eye! My eyelid, rather. It was a strange feeling having high-frequency sound waves moving through my eye, but we were able to view and determine the size of the tumor. It is considered a small to medium sized tumor about the size of a pencil eraser.
JULY 9th: News
This was a tuff one. I received a call from the retina specialist who again, cautiously informed me that that the ultrasound test results where pointing to #2.
Amelanotic Melanoma
My heart sunk. I was taken a little off guard.
I have heard stories of melanoma, and they weren't good.
It scared me.
But before I could think more about it, he continued to reassure me and mentioned that, though the test results pointed to that, he and his partner were not ready to recognize it as so. His partner, who is more familiar with tumors, wanted to examine me and they were also going to send the findings to a contact he had at UCLA.
JULY 10th: Dr. Gee
I met with Dr. Gee (the partner / ophthalmologist / retina specialist / my main contact going forward). He spent a good amount of time examining my eye and going over questions, concerns and game plans with Aaron and I. He was and has been amazing through this entire process. Very informative, extremely personable and down to earth and serious, when we need to be.
Have you ever seen ONE eye dilated? EYE see you ;)
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Have you ever seen ONE eye dilated? EYE see you ;)
JULY 15th: UCLA
I received a call from Dr. Gee. He informed me that, to his surprise, his contact at UCLA agreed, without question, that it was melanoma. He thought for sure she would want to examine me herself, knowing how irregular and rare this tumor was. He didn't deny that she was correct, however, he still wasn't convinced enough to recognize it as so. We had decided to get another opinion.
JULY 16th: Intermountain Medical Center (IMC)
I met with another Doctor who was extremely thorough and detailed in his notes. He was quite impressive with how knowledgeable he was, not to mention, personable as well. He agreed with Dr. Gee. In ways it resembles Choroidal {Amelanotic}Melanoma, but in others, it did not. He suggested that it could be a simple Atypical Nevus (unusual benign mole that usually resembles melanoma) or something even more rare called a Solitary Idiopathic Choroiditis or SIC (an amelanotic tumor, whose cause is unknown, that can resemble other conditions, including choroidal melanoma).
Our next step from here was to take a break! ;) We still had concerns and this was by all means, not the end of the road, but after all the waves that seemed to be crushing down on me the past few weeks, I decided it was time to ride them. God had totally set my mind and heart at ease and I just felt a sense of relief, even though nothing had been ruled out. I felt good. The scariness of it all would creep up on me at times, but it was healthy scare. I was going to be ok no matter what :)
So literally, we took a break! We hopped on a couple of planes and flew to Cancun to celebrate my sister-in-law's marriage! It was so refreshing to be carefree and to just enjoy life! Her wedding turned out SO beautiful! She was gorgeous, the groom was handsome and the day was PERFECT!
I was bummed to leave but it was time to jump back on the band wagon and get things figured out. Plus I missed my cute kiddos! When I got back, I spoke with my doctor and we decided to send my results to Dr. Jerry Shields, one of America's Top Doctors for Ocular Eye Cancer. He and his team concluded that, although the tumor is extremely peculiar and irregular, it showed enough characteristics that it's very possible it could in fact be Choroidal Melanoma.
In conclusion, I received a clinical diagnosis of
Choroidal Amelanotic Melanoma.
AUG 22nd: Utah Cancer Specialist
I met with one of Utah Cancer Specialists to get an MRI. After talking with him, we decided that it would be more beneficial if we did a PET/CT scan instead.
Checking in, getting settled in and chillin' in the machine all took about 3hrs. They gave me a glucose drink, injected me with an extremely small dosage of radiation, then had me completely relax. Seriously RELAX. No phone, no reading, no talking, no moving! Basically I was told to take a 45 minute nap so that my muscles would be completely relaxed and use less energy. This would allow all the energy to be "eatin' up" by any greedy tumors my body may have and the images would "light-up" on the scan. I had the "privilege" of drinking another full glucose drink before I entered the machine. Over all the entire process wasn't too bad. I took this time to truly just relax and just chill. The only part I got remotely close to being nervous was when I was in the machine. You're not supposed to move and of course, of courrrrse, my throat got a little tickle in it and I had to cough! Turned out to be ok though. I received a call with the results shortly after I got home and it was good - - everything looked good. It hadn't spread :)
SEPT 2nd: Radiation Plaque Treatment
A) Gold plaque that acts as a "sheild" B) Silicone "shell" that holds the radiation "seeds" C) Radiation Plaque
***Radiation Plaque Surgery***
If you're one of those people who can handle watching things, the link below will take you to a video of someone getting a radiation plaque put in their eye. This is ONLY for those who can stomach it. I thought it was pretty crazy interesting and I can handle it so I thought I'd share.
**This clip contains images that some viewers may find disturbing - Viewer discretion is strongly advised**
Radiation Plaque Surgery
SEPT 3rd: It's Official
Dr. Gee and I talked more about the surgery and how it would play out. He answered all the questions I had and I feel extremely comfortable with the whole situation. It's scheduled for October 2nd! I will go in for surgery and it should take about an hour or two, depending on how quickly they can find the tumor and get the plaque positioned directly over it. Remember, my tumor is amelanotic so "essentially colorless". They will have to shine a light in my eye and outline where the tumor is in order to know exactly where to place the radiation plaque. It is also located in the back wall of my eye verses the side so it may take some more time getting the plaque positioned behind my eyeball. After the surgery I will be able to go home. The "after plans" are still in the works, however, as it was suggested that I stay away from children and people who are pregnant. I will have a lead plate "patch" that will cover my eye, and the radiation isn't very strong so the chance of it effecting anyone else drops considerably low once it has left my body. As a precaution, though, I will be spending this time away from my kiddos! ...and my cute pregnant sister ;)
I will go back in on October 6th for another surgery to take it out. I will be "slightly" put to sleep, just while I get the numbing shot, so I won't feel anything, but I could wake up while they are still working on me. Are you freaking out yet?! Because I totally was when I heard that! Yikes! Who wants to WAKE up while they are messing with your EYEBALL?! Freaky! haha I was reassured that I won't feel a thing and this part of the surgery should take a considerably less amount of time to complete - around 15-20 minutes - so really, by the time I "come out of it" the plaque could be out of my eye already and they would just be finishing up. Ok. I guess I'm cool with that?? lol
I shouldn't have too much pain, but they will be giving me eye drops to help for when there is. I will also experience some discomfort and fatigue, but that is to be expected after everything that my eye will go through. I will have regular follow-up appointments, monitoring the tumor (making sure that it's shrinking/dying) in the months and years to follow.
So that's it folks!
I like to think of it as pretty crazy, but also kind of cool! I'm actually {secretly} stoked I get to wear an eye patch and be an pirate for Halloween! How bad-ass is that?!! ;) ...couldn't have asked for a better month for this all to fall in. I am a true believer that everything happens for a reason and everything will fall into place just as it should. God is great! I am super grateful and thankful for all the support I have from close friends and family. They have been amazing! So thanks to all of you!!
...and I will post some updates, post surgery as well :)
Our next step from here was to take a break! ;) We still had concerns and this was by all means, not the end of the road, but after all the waves that seemed to be crushing down on me the past few weeks, I decided it was time to ride them. God had totally set my mind and heart at ease and I just felt a sense of relief, even though nothing had been ruled out. I felt good. The scariness of it all would creep up on me at times, but it was healthy scare. I was going to be ok no matter what :)
So literally, we took a break! We hopped on a couple of planes and flew to Cancun to celebrate my sister-in-law's marriage! It was so refreshing to be carefree and to just enjoy life! Her wedding turned out SO beautiful! She was gorgeous, the groom was handsome and the day was PERFECT!
I was bummed to leave but it was time to jump back on the band wagon and get things figured out. Plus I missed my cute kiddos! When I got back, I spoke with my doctor and we decided to send my results to Dr. Jerry Shields, one of America's Top Doctors for Ocular Eye Cancer. He and his team concluded that, although the tumor is extremely peculiar and irregular, it showed enough characteristics that it's very possible it could in fact be Choroidal Melanoma.
In conclusion, I received a clinical diagnosis of
Choroidal Amelanotic Melanoma.
AUG 22nd: Utah Cancer Specialist
I met with one of Utah Cancer Specialists to get an MRI. After talking with him, we decided that it would be more beneficial if we did a PET/CT scan instead.
A PET scan creates pictures of organs and tissues inside the body. A small amount of a radioactive substance is injected into a vein. This substance is absorbed mainly by organs and tissues that use the most energy. Because cancer cells tend to use more energy than healthy cells, they absorb more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.
Meanwhile, a CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. Sometimes, a contrast medium (a special dye) is injected into a patient’s vein to provide better detail in the images.
AUG 25th: PET/CT ScanChecking in, getting settled in and chillin' in the machine all took about 3hrs. They gave me a glucose drink, injected me with an extremely small dosage of radiation, then had me completely relax. Seriously RELAX. No phone, no reading, no talking, no moving! Basically I was told to take a 45 minute nap so that my muscles would be completely relaxed and use less energy. This would allow all the energy to be "eatin' up" by any greedy tumors my body may have and the images would "light-up" on the scan. I had the "privilege" of drinking another full glucose drink before I entered the machine. Over all the entire process wasn't too bad. I took this time to truly just relax and just chill. The only part I got remotely close to being nervous was when I was in the machine. You're not supposed to move and of course, of courrrrse, my throat got a little tickle in it and I had to cough! Turned out to be ok though. I received a call with the results shortly after I got home and it was good - - everything looked good. It hadn't spread :)
SEPT 2nd: Radiation Plaque Treatment
I met with a Radiation Oncologist to go over details of how my eye was to be treated - by using Radiation Plaque treatment. A bottle-cap-like plaque or small carrier (about the size of a nickle) would be designed with small radiation cells in one side and gold plated on the other (this would shield healthy nearby tissues from the radiation). It would be surgically placed over the tumor (which is inside the back wall of my eye) an sewn in place with small stitches. I would also have some small stitches near the front of my eye - this is because they will need to insert the radiation plaque underneath the first layer of my eye and close it after it has been sewn into place. Radiation therapy can preserve some of the vision in the eye, although sometimes it may be lost anyway if the radiation damages other parts of the eye. I already have permanent/irreversible damage to my central vision caused by the tumor so I'm not worried about that. They did say that my peripheral vision should stay intact, although there are some risks involved, however, they may not surface until years down the road. Also, the plaque delivers a localized radiation so it is unlikely that I will experience any hair loss (eyelashes) or nausea. It will not effect the vision in my other eye. This type of treatment has been proven to be extremely successful and the advantage of using a radiation plaque over surgery is that the eye structure is preserved, which may result in a better appearance after treatment.
***Radiation Plaque Surgery***
If you're one of those people who can handle watching things, the link below will take you to a video of someone getting a radiation plaque put in their eye. This is ONLY for those who can stomach it. I thought it was pretty crazy interesting and I can handle it so I thought I'd share.
**This clip contains images that some viewers may find disturbing - Viewer discretion is strongly advised**
Radiation Plaque Surgery
SEPT 3rd: It's Official
Dr. Gee and I talked more about the surgery and how it would play out. He answered all the questions I had and I feel extremely comfortable with the whole situation. It's scheduled for October 2nd! I will go in for surgery and it should take about an hour or two, depending on how quickly they can find the tumor and get the plaque positioned directly over it. Remember, my tumor is amelanotic so "essentially colorless". They will have to shine a light in my eye and outline where the tumor is in order to know exactly where to place the radiation plaque. It is also located in the back wall of my eye verses the side so it may take some more time getting the plaque positioned behind my eyeball. After the surgery I will be able to go home. The "after plans" are still in the works, however, as it was suggested that I stay away from children and people who are pregnant. I will have a lead plate "patch" that will cover my eye, and the radiation isn't very strong so the chance of it effecting anyone else drops considerably low once it has left my body. As a precaution, though, I will be spending this time away from my kiddos! ...and my cute pregnant sister ;)
I will go back in on October 6th for another surgery to take it out. I will be "slightly" put to sleep, just while I get the numbing shot, so I won't feel anything, but I could wake up while they are still working on me. Are you freaking out yet?! Because I totally was when I heard that! Yikes! Who wants to WAKE up while they are messing with your EYEBALL?! Freaky! haha I was reassured that I won't feel a thing and this part of the surgery should take a considerably less amount of time to complete - around 15-20 minutes - so really, by the time I "come out of it" the plaque could be out of my eye already and they would just be finishing up. Ok. I guess I'm cool with that?? lol
I shouldn't have too much pain, but they will be giving me eye drops to help for when there is. I will also experience some discomfort and fatigue, but that is to be expected after everything that my eye will go through. I will have regular follow-up appointments, monitoring the tumor (making sure that it's shrinking/dying) in the months and years to follow.
So that's it folks!
I like to think of it as pretty crazy, but also kind of cool! I'm actually {secretly} stoked I get to wear an eye patch and be an pirate for Halloween! How bad-ass is that?!! ;) ...couldn't have asked for a better month for this all to fall in. I am a true believer that everything happens for a reason and everything will fall into place just as it should. God is great! I am super grateful and thankful for all the support I have from close friends and family. They have been amazing! So thanks to all of you!!
...and I will post some updates, post surgery as well :)
.
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