November 18

Yesterday I was diagnosed with a cancer called an amelonotic uveal melanoma in my right iris. Amelonotic describes the color (or lack thereof), uveal describes the part of the eye it's in (the front part, including the iris, which is where mine is) and melanoma is cancer of the melanocytes, which are your pigment producing cells. Here it is.

 

I'm really not an overly private person, and I really don't mind taking about it and sharing, but I've already had so many questions from people that I wanted to just get this written down so people can read it. I also wanted to record my thoughts and feelings about this day for my own record, so ill probably give more details than needed, but it's for my benefit, not yours :)

I want to start at the beginning.

When I was (probably) 8 we noticed a small speck of color in my eye. We had a doc check it out and they said it was just a speck of pigment, a freckle. So we didn't pay any attention to it until 2009 when I had an eye infection and went in to the first eye doc who could see me, I think it way Dr Parry at Logan regional. As he did his exam he noticed the spot in my right iris and asked if I knew I had a lesion in my eye. That's when I remembered the spot from before, and my mom and I both SWORE it was just a speck before, but was much larger now.  He said it was pretty raised (within the eye) and vascular (had a good blood supply) and he wanted me to go to the specialists in Salt Lake. He set up an appointment with Dr Mifflin in salt lake, who said he didn't know what it was but wanted to send me to grand rounds. Grand rounds is where a bounch of top docs and med students in a specific field get together and present interesting/ hard cases. I did grand rounds, which was basically just a lot of people looking at my eye, and some pictures of my eye, and all the docs put their heads together to decide they didn't know what it was for sure and wanted me to go see the shields in philadelphia.

Doctors Jerry and Carol shields are THE WORLD specialists for eye tumors and cancers. So in Februrary (I think) 2009 my parents and I went and saw the shields. They said that because of the good blood supply it was too risky to remove or biopsy the tumor. They also said that even though my mom and I were POSITIVE that it had grown since we first noticed it when I was 8, that most people who SWEAR that lesions like this have grown, are mistaken, and further observation doesn't show any growth or need for removal. They admitted that they didn't know for sure that it wasn't cancer, but they felt confident that it was just a mole and that close monitoring every 6 months should be sufficient.  For a few years I was a good little patient and went every 6 months, with everything looking fine and honestly I just got sick of being poked and prodded, so I skipped a few follow ups. Then in April of 2012 my tumor started bleeding. At first we didn't know why, and the salt lake docs wanted me to do grand rounds again. A few days later I found out I was pregnant with Wes and we all breathed a sigh of relief, as that had to be the cause of the bleeding. I went to grand rounds anyways, and got the same advise. We don't know what it is, the bleeding was probably from the pregnancy, come back for follow up after you have the baby.

My eye bled 2 more times during the pregnancy, and the last time it formed a blood clot and was very painful and took several days to resolve. I really was so sick of the dumb thing. I had Wes January 2013, then we sold our house and moved, life as a new parent was crazy, I went back to work. I kept finding reasons not to have the follow up that I was supposed to have after the baby was born.  And honestly I didn't feel the need. They were just going to say the same thing- we don't know what it is, it's probably fine, keep watching it and following up. I started getting headaches that started RIGHT behind that eye, which scared me enough into scheduling the follow up in August. And what do you know. They said my tumor wouldn't cause headaches, they didn't know what it was, and that the longer we went without significant change in the lesion, the more likely it was just a normal, harmless mole, keep monitoring it. At this point I was so sick of the dumb thing, and my deductible was met from having the baby, so I asked the doc if I could just have it removed.  He said he would recommend having it removed by the sheilds in Philly  if  I wanted it out, so he would do an email consult to see what they thought about removing it. That was August, and by October I hadn't heard back about the email consult, and I lost my desire to have it removed. It just didn't seem worth it. I really was set on just leaving it alone.  But out of no where I had a strong sense to follow up on that dumb email consult. Dr mifflins office said there had been confusion, but they would email the sheilds again, but in the meantime they recommended a consult with Dr Mifflin in salt lake. I went to the consult confident again that I wanted it removed, but he reminded me of all the risks of the surgery. I was pretty confident now that I didn't want it out, but felt like I should go to Philly anyways.  I prayed about it and got some weird mixed feelings about it, but still had a feeling I needed to go, so we booked an appointment and decided to go to go to the temple and pray for clarity. Chuck and I both felt clear as day that we were supposed to go to Philly. The temple was the only time I felt good and clear that I was supposed to go to Philly.

So we set up a baby up sitter for Wes and flew out on the 17th. We had some issues with flights and the hotel, but we got about 4 hours of sleep and went to the appointment at 7 int the morning. The Sheilds were not in the office today, so my appointment was with their associate, Dr Lally. She came in and evaluated my eye, then sent me for pictures. I had photographs, scans, and another type of photograph done.  Then went back to the exam room and Dr Lally quickly came back in and showed me today's picture right next to a picture from 2009. It was obvious it had grown. She pointed out that the tumor was still taking up the same amount of 'clock hours', aprox 3 clock hours, but that the nodule had clearly grown outward toward the cornea. She said she wanted to grab Dr armond, and that we would probably talk about surgically removing it placing a radioactive device, then she left.

She didn't say at that point that it was cancer, but that's when I knew. From my work as a medical assistant for a dermatologist I knew that it growing was not good, and she had said radiation, which to me meant cancer. I really wanted to turn to Chuck and make sure he knew what she hadn't said yet. But I don't think I was ready to say it. I wanted to be wrong. So I text my parents that it had grown and we were going to talk about surgery or radiation.  My mom also works for a dermatologist, so I think I wanted her to say it and validate my interpretation. We waited probably 45 minutes for Dr armond. It felt like forever. He quickly spoke with Dr Lally in the hall and sent me for an ultrasound. The ultrasound took forever. Then waiting for Dr Lally took forever. She came in and started grabbing packets from the wall that i had previously looked at and knew the title of the packet was "malignant melanoma of the eye, winning the battle for life and sight" but she still hadn't said it. She sat down and said "now with melanomas of the eye...." but she still hadn't said it. She hadn't said that I had melanoma. And I needed to hear her say it before it could be real. So I asked if they thought it was a melanoma, and she said yes. It was an amelonotic uveal melanoma. I work in dermatology and have a family history of skin melanoma, so I am fairly familiar with the dx in terms of skin, and it's not good news.  My first question was "do you need to do a biopsy for a definitive diagnosis?"Aka are you sure? she said that with an ocular melanoma they are very distinctive, and with the history of  bleeding and growth, she didn't need to do a biopsy, it was a melanoma. She talked to me for another.. 5minutes? 20 minutes? I have no idea. She said some statistics. 10% something. 50%something. Genetic testing something. Oncologist something. Surgery to insert a plaque radiation something on Thursday.  I was listening to what she said, I just wasn't hearing what she was saying. The only part I can repeat from Dr lally is that there isn't a known genetic correlation and that Wes isn't at higher risk for this because of me. And that my moms skin melanoma had nothing to do with my uveal melanoma. and she kept talking but I didn't hear it. Melanoma. Cancer. Me. Radiation?  Am I gonna die? Will my son remember me? Will chuck be ok? Wait. Your not listening to what she's saying. Try to listen. Something about chest x-rays and the liver and now you can go schedule treatment for Thursday.  I was shocked. Even though I knew for a few hours before she said it, I was shocked. And silently sobbing and shaking.

They had us wait in a hallway for the surgical coordinator. I sat by chuck And just cried. He got me more tissues and I just cried. Then I decided I needed to tell my family so I started making calls. I talked to my dad first and he got choked up, which made me cry more. Then I talked to my mom, and she got choked up, which made me cry more. A n d she offered some words of advice, as she had gotten her melanoma diagnosis about the same age that I am now. Which is 24, too young for cancer. Someone should tell melanoma that 24 is too young.  And they obviously both had questions that i didnt know the answers to because i couldn't listen to Dr. Lally. There was a lady sitting by us as i called and told my paremts, and when it was her turn to leave she expressed sincere empathy and said she would be praying for me. That was very touching. And made me cry worse :)

But after another enormously long wait I went in to the scheduler who was so sweet and patient as I had no idea what i was doing and she  answered all my questions that Dr Lally had just answered. She said I needed a physical before they would let me have surgery, so she finished explaining everything, and I did a quick physical with Dr Lally, then I FINALLY got to leave. We were there for 7 hours. And my eyes had been numbed, dilated, photographed, scanned, photographed again with a crazy lense they suctioned to my eye, then ultrasound, more numbing drops, more rinsing drops, more dilating drops, plus crying a lot, and I was just ready to go home. But I knew if I I went back to the hotel I would just lay in bed and cry and freak myself out. So we walked around Philly and found a park. I then called the rest of my siblings and a few close friends to give them the news, and chuck called his side of the family.  That was good to talk to them. But it also made me cry more :) I realized something in the park that I think is really cool, that I will share a part of. In my religion we get patriarchal blessings. I got mine when I was 20. It says clear as day in my blessing that there are parts of this blessing that will preserve my life. I always found that so weird and poured over my blessing to see what could possibly save my life. What I realized is that my blessing counseled me to always be in tune with the spirit and that the temple should be a special place for me. And I realized that I had had so much doubt and turmoil about coming to Philly. Honestly I DID NOT want to go. Too much time, money, effort, I didn't want to leave my baby, ect. And the temple was the only place I got a clear, calm answer that I needed to come. So we came. And I was disgnosed with a cancer that could kill me if I had waited too long. And if I hadn't come, I beleive the doctors in salt lake would have kept telling me it was fine. Side note- I have no ill feelings toward any of the doctors that previously told me it was fine. I beleive they used the info they had at the time to make a recommendations to me that they thought were best. And Dr Lally said she feels confident the lesion was only a mole when I was there last in 2009, and that it made the change to cancer sometime in between my 2 visits. For a minute I thought, well then we should have just removed it before it ever had the chance to change to cancer. But I don't see any point in being mad about the past. It doesn't change my situation now. We spent the rest of the day thinking we were funny as we cracked cancer jokes and walked around independence hall and the liberty bell center. We tried to take a subway back to our hotel, but we didn't know what we were doing and I was loosing patience, so we tried to take the bus, and same thing. Really. We don't know how cities work. So we just took a cab. To the wrong hotel. Why would Marriott name two hotels so close in proximity something so close in name?  Anyways we finally got to the hotel.  Like I said this is all the details for my own record. Now here is the info I'm sure you guys are actually interested in. 

According to the packet of info Dr Lally gave me , Uveal melanoma is rare, but still the most common type of adult eye cancer.  Less than 10% of patients have a metastatic tumor somewhere else, meaning the cancer has spread. The treatment they are recommending is called plaque radiotherapy. During surgery on Thursday they will sew in place a small radioactive plaque over the eye, then sew my eye lid shut. If I choose to, they will also do a needle aspiration biopsy which will take 2 months to get results on, and will be used for genetic testing to indicate how aggressive my cancer is, and what my risk level is for the cancer metastasizing. Sounds great, but the biopsy can cause side effects and it is pretty pricey. I have to decide by Wednesday if I want this done.  Then when I wake up from surgery I'll be in pain, anxious from the discomfort of the plaque, and naseauos, they will drug me up and send me to a specific hospital that I have to stay at, I don't have a choice, 2 minutes away where I have to stay til Monday. I'll be wearing a lead eye patch, so those around me won't be getting radiation. Chuck can stay in the same room, he just can't sleep on the same bed. They also mentioned that the amount of radiation the rest of my body will get will be equivalent to a chest x-ray and there should be no side effects. Chuck can come and go as he pleases, but I'll be drugged and won't be allowed to leave the room.  Then Monday they will surgically remove the plaque and I can go home! I can still have vision issues after the surgery including eye swelling, vision loss, double vision, ect. 

Over the next 3-6 months the tumor should shrink and I should just be left with a scar. Like I said earlier only 10% metastasize, but when they do they usually got to the liver and lungs, so I'll need chest x rays, lab work, physicals and liver imaging (ultrasound, ct, MRI) twice a year for the rest of my life. 

The treatment they are doing has a 98% efficacy rate. But if it doesn't work, they would either do it again, or remove the eye. I'll have to come back to Philly in another 3-4 months for follow up, and 
probably once every two years for the rest of my life. 

Those  are all the statistics I can remember right now. If I missed anything I'll add it later. 

I'm already feeling blessed and humbled. People have offered prayers, fasts, dinners when I get home,  and putting my name on the temple prayer rolls. Not to mention the wonderful people who are watching Wesley. Thank you to Kira, Scott, Jenny and will for taking Wes. Thanks to Wynn and Lois for taking our dog Sonny. Thanks to my mom and dad for helping with the flights  and hotel. Thank you to that sweet stranger who was the first to offer prayers on my behalf, and anyone else who has bowed their head to ask heavenly father to help me be ok and to stay strong.. Thank you to everyone who made it possible for Chuck to be here with me. We didn't think he could come. I'm so glad he did. I need him here. I can't imagine having to make that phone call to him, I'm greatfull he was with me. I'm greatfull for modern medicine and for the doctors who have helped me. I'm thankful that the lord knows better than me and helped me decide to come, and provided people and ways for us to be here. Thank you thank you thank you.  With each prayer I say, I begin by saying "thank you for this day" and I will feel that so strongly tonight. Thank you for this day that opened my eyes to the cancer within my body. Thank you for each day that I get to spend on this earth.