Life is moving along at a normal pace these days, although normal for us feels somewhat fast now. There is nothing like a diagnosis of cancer to make you want to hang onto each day. “Life is fragile” is a phrase that I’d always heard but never really grasped. I hold it in my hand now, like it or not.
In October, I had a second surgery on my eye and since then, the pressure has been normal. The skin of my eye is supposed to cover my stitches, but it refuses to cooperate. I had a few procedures in October to try to fix that problem, but my eye tends to be stubborn, and I still have a line of exposed stitches. It’s minor.
In December, Brian and I traveled to Philadelphia for my follow up visit at Wills. My eye is healing fine, and aside from scratchy stitches, everything looks good. I will always have a keyhole shaped pupil, which I thought would bother me more than it does, but it is a constant reminder to me that God is good. I’ll write another post soon about the mind of a cancer patient. It has been quite a ride.
December was also the month that I had an ultrasound done to check my liver. Ocular melanoma tends to want to spread to the liver, so my doctor wanted to check to make sure that everything was okay. He was really funny and blunt about the whole thing. He told me that the pathology report looked great, and that in his opinion, I should be fine forever. That is a MUCH better prognosis than I had even before cancer…FOREVER:) Then he proceeded to tell me that if I was one of the unlucky ones, and this had already spread, there was nothing that they could do for me. Gee, I hope I’m one of the lucky ones!
Well, the ultrasound showed a spot on my liver. Two MRI’s showed that I have two spots that are benign. Whew! So, for now, I’ve been issued a clean bill of health.
Cancer scares the crap out of you. It makes you want to curl up into a ball and lie really still and maybe it will go away. Well, it doesn’t go away, but I’m making peace with it. My friend Keely sent these words of a song to me that I love… I will not be afraid, I will not be afraid. I will look upward and travel onward and not be afraid.
Brian is traveling again, I am full time mom again, and I am trying with all my might to get back into nursing. I was not ready to go back to school yet, but, not to be stopped, I headed into Nashville and took a nursing assistant course.
In the midst of all of this, I realized that I have been given so much in life. I have a great family and wonderful friends. I have food everyday and a roof over my head. I live in a place where I can get the best medical care there is. And each day now I think on this… to whom much is given, much will be required.
Just over 2 weeks ago, Amy endured a second surgery on her eye that was supposed to do nothing other than clean her eye out and prepare it for the inevitable surgery to relieve the high pressure. Amy had been dealing with chronic high pressure in her eye for over 2 weeks and had been relegated to her bed to deal with the massive pain that went along with this issue. The Doctors at Vanderbilt had to wait on the pathology report from Wills Eye Institute in Philadelphia before moving forward with any more surgeries to correct the issues that were plaguing Amy’s eye. That surgery on October 2nd was not supposed to fix the problem. In fact, I asked a direct question about the high pressure of Amy’s Doctor immediately following surgery in hopes of some unexpected good news. I was told there was nothing in the surgery just completed that would relieve Amy’s pain from the high pressure. She was told to expect a few days of minimal pain before the high pressure returned.
We are 16 days removed from that surgery and the high pressure and pain never returned.
I am a practical man that usually can find practical answers to most every issue. But on this one I am going to claim the impractical and say that the high pressure and pain were removed by something greater than a surgery. I believe healing can often come in the form of amazing surgeons who can perform procedures I can’t even fathom attempting. But I also believe that healing can come in the form of an unexpected and unexplainable turn in symptoms and circumstances. I firmly and passionately believe Amy has had the amazing experience of both of these types of healings. The gifted hands of a surgeon and the prayers of God’s people have been at work in Amy’s life since the day she was diagnosed.
So, now we move forward. While there are still many more steps in this journey, we are glad to move away from this one. On Wednesday, Amy will see Dr. Law (her new best friend) at Vanderbilt to check a spot on her retina that looks suspicious. We don’t think it will be anything, but everything will be looked at more closely now that Amy has had cancer in that eye. Amy also went to see her Optometrist today who is doing some research on the best types of contacts/glasses to help with the disparity of vision in Amy’s eyes. In fact, the Optometrist (the first one to notice the spot as abnormal) asked Amy’s permission today to write an article about Amy for some of her really exciting Eye Journals she reads.
We will keep you updated but can’t thank you enough for praying for us and following us through this entire process.
(If you would like to read a better written account of Amy’s healing, check out Shaun’s post)
Last Friday we did our daily routine of traveling the 35 miles from our home to the Vanderbilt Eye Institute to check the pressure in Amy’s eye. This has become part of our daily routine for the last 2+ weeks. Friday’s appointment was similar to the previous ones except this would be our last appointment with the Retina Specialist that had been taking care of Amy. Dr. Law, who has done an amazing job with Amy, felt like it was time to move us over to the Glaucoma Specialist so she could deal directly (and most likely surgically) with the chronic high pressure issues that have been causing the pain. So, that visit ended with an agreement to keep Amy comfortable over the weekend so she could start getting some answers on the pressure come Monday afternoon. That worked well until about and hour after we arrived home when Dr. Law called and, after consulting with some other Doctors, wanted to amend the plan. She wanted to do surgery and wanted to get it done that night.
Dr. Law decided that for the Glaucoma Specialist to be confident in diagnosing Amy that the eye needed to be cleaned out and all of the synthetic that had placed in the eye during the low pressure issues needed to be cleared away. She actually didn’t believe there was any of that synthetic left (and was right about that) but the Glaucoma Specialist could not move forward until that was a certainty. So, Friday afternoon we went back up to Vanderbilt to prep for what was supposed to be a 30 minute surgery. It took us almost 2 hours to get checked in and escorted to the OR where the surgery would start at 7pm. Amy had her beautiful hospital gown on for mere seconds when Dr. Law called and told us that there were no Anesthesiologists available because of a backlog of emergency surgeries and we were now being rescheduled to Saturday morning. So we drove home, slept and drove back to Vanderbilt on Saturday.
The surgery went well but actually lasted 1 hour and 20 minutes because Dr. Law discovered that 3 of Amy’s stitches from the surgery to remove her tumor had busted and needed to be replaced. This revelation explained the low pressure issues that started this whole marathon of Dr appts and procedures a few days after the surgery in Philadelphia. It was good news that we had an answer to the cause of the low pressure but it did not fix the high pressure problem, which has been the worst of all the issues over the last 2 weeks. Amy rested well on Saturday and had a great post-op visit on Sunday, where her pressure was normal and her pain was minimal. That visit was on Amy’s birthday and Dr. Law rewarded Amy with the gift of not having to come back for an appointment at Vanderbilt for over a week. We were originally scheduled to see the Glaucoma Specialist today but since the surgery was more intensive than planned, Amy received some extra time for her eye to heal before moving on to the next step.
So, we have all of this week off from our friends at the Vanderbilt Eye Institute and will start with them again next week to tackle the Glaucoma issues. The surgery actually reduced to the pressure in Amy’s eye and Dr. Law believes she should have several days of low/normal pressure before the high pressure (and the pain) returns. It has been wonderful for Amy to have minimal pain over the last 48 hours! She is still exhausted from the surgery and 2 weeks in bed but has been able to get up and live a few moments of a ‘normal life’ the last two days. She even went out to lunch with her sisters today! This immediately created the need for a nap, but it was a step in the right direction.
It is still likely another surgery will be needed in the coming weeks for the high pressure. However, right now we are enjoying a respite from the cycle of pain and frustration that has dominated the last two weeks.
Here’s the beginning of the letter from Dr. Jerry Shields attached to our pathology report.
“As you can see, it was a malignant melanoma of the iris…she should probably have a good prognosis, but close followup is mandatory.“
This is exactly what we expected to hear and there were some positive parts of the report as it pertains to Amy’s long-term prognosis. There are three types of malignant iris melanomas: spindle cell B, epithelioid and mixed cell. I’ll save you from all the boring stuff and just let you know that spindle cell is the best of the three and carries with it the most positive prognosis. Amy’s came back as a spindle cell melanoma. There are several long term factors that determine if the tumor will spread to her vital organs. However, the bottom line for now is that there is only a 5%-7% chance of that happening. We will take that any day of the week. If the Weather Channel says there is a 5%-7% chance of rain, I don’t even think about bringing my umbrella!
We still need some of the report translated for us, but the part we can understand says, “tumor appears to have been completely excised.” That’s great news because it eliminates the need to go back to Philadelphia for radiation treatments. We now will find an Oncologist here in Nashville and begin the process of quarterly PET scans to make sure the cancer has not spread. Even though there is no indication that there is anything cancerous left in the eye, it is always a slight possibility that ‘micro-metastasis’ could have occurred before the tumor was removed. We will be vigilant in making sure Amy’s liver, lungs and bones are clear in the coming years.
The reality of the ‘right now’ in our lives is we need to figure out how to release the high pressure from Amy’s eye and allow her to function again. She has been bound to her bed for almost two weeks because of the pain from the high pressure and the medicine that controls that pain. This pathology report allows the Doctors at Vanderbilt to operate on Amy’s eye without fear of spreading any of the cancer seeds. Amy has a regular appointment at Vanderbilt tomorrow to check her pressure and another appointment on Monday with the Glaucoma Specialist to formulate a plan on how to alleviate this high pressure. Amy still hurts today but we finally have a break in the cycle of waiting and can see some hope in bringing Amy relief from this pain.
We really don’t have the words to thank the literal thousands of you following our journey and praying us through this. This is not the end of the journey but we are constantly reminded that we are not alone.
Hopefully the next update on this blog will include a plan to repair Amy’s pressure and pain.
(from Brian)
We have been in a ‘holding pattern’ for the past week with Amy’s eye pressure. She has been on four different types of drops/meds to bring her eye pressure down. Normal pressure is between 12-22 and Amy has consistently been in the low 30′s, even with all the medicine. It has been a difficult 8 days for Amy as she has dealt with constant pain and side effects from the all the medicine.
Today we had another visit to Vanderbilt where her pressure was measured at 32. However, the Doctors told us today that a plan needed to be created to deal with this. Amy’s had several Doctors look at her (and all seem to have differing opinions on the cause of the pressure issue) and they have used the words, “complicated, rare and delicate” to describe Amy’s situation. We are grateful for well educated, caring Doctors but hearing that they wanted to make a “plan” at least gave us some hope.
First, let me say that blogs/Facebook/Twitter updates can often give the impression that the person sending out the update is never struggling or frustrated. I will be honest and say that this past weekend was one where our overwhelming state was one of frustration, anger and fear. It is easy to hit a point, especially when there does not seem to be progress, where it feels like this is the ‘new normal’. Our time was this past weekend and it was hard. We are blessed to have great family, close friends and a ton of people praying for us so these times don’t become where we stay. Today is a new week and we have some optimism and belief that Amy will see progress and feel better very soon.
Now to the ‘plan’. It’s actually not much of a plan, but it’s something. We will go back to Vanderbilt at 3:30pm on Wednesday to have Amy’s pressure checked again. However, Amy was taken off about half of her medicine starting this morning to see if her eye would somehow regulate the pressure on its own. The Dr today believed she has been on the meds long enough and they weren’t ever meant to be long-term solutions. If Amy’s pressure is in the 20′s on Wednesday, we will walk away and check in a few days later. If the pressure is 30 or above, Amy will have another procedure (and possible surgery) to relieve some of the pressure from the eye.
We also have been told that the Pathology report from Amy’s surgery in Philadelphia will be ready in the next 72 hours and that could give the Doctors some information they may need to help Amy long term.
I realize this is not much of an update but it’s all we have now. I will keep you updated as the week progresses. Thanks for praying.
(written by Brian)
I apologize in advance if this post is disjointed and it reads like I wrote it when I was half-asleep (because that part is true).
For the last six days we have asked people to pray that the pressure in Amy’s eye would increase and it would begin producing liquid (aqueous humor). Well, those prayers have been answered. The part of your eye that makes that fun liquid is called the ciliary body and Amy’s had been traumatized because about 20% of it had been removed in the surgery due to that nasty tumor growing in there. Well, the rest of the ciliary body went on strike and refused to make that liquid that is needed to keep the iris and cornea from rubbing against one another (and causing some messed up vision).
Now we have a different problem. The pressure in Amy’s eye is WAY too high because another part of the process is not working correctly. A little perspective tells us that typical eye pressure should measure between 12-22. Amy’s has been as high as 66 in the last 36 hours. That type of pressure causes massive pain, headaches, nausea, etc. Not to mention some long last negative effects on one’s vision. So, we have spent the last 2 days making multiple trips to the Vanderbilt Eye Institute to have Amy taken care of by some great Doctors. Today alone Amy had to have a procedure done 3 times where an incision is made in the eye and fluid is drained out to release the pressure. However, each time the eye filled back up and the pressure went through the roof. We have lived in this cycle for the past 36 hours and, outside of childbirth, I have never seen Amy in this much pain.
So, the obvious question is: what’s going on with the high pressure?
One of the Doctors thinks she has found a ‘secondary glaucoma’ on Amy’s eye. I never really knew much about this (come to think of it, I didn’t know much about any part of the eye until 6 weeks ago) but learned pretty quickly today. Again, show me some grace on the elementary explanation. Your eye needs that liquid (aqueous humor) to fill up the chamber between your cornea and iris (anterior chamber) so you don’t go blind. You also need the ‘drain’ in your eye to work correctly so the ‘used up’ liquid can drain out and be replaced by the new liquid coming from our friends in the ciliary body. Today’s Doctor thinks Amy has a problem with her ‘drain’. The cancer that was in Amy’s eye may have damaged the drain, causing it to drain at a rate that is much slower than the rate of new liquid coming into the eye. The surgery 11 days ago only made it worse and now we have a problem where Amy’s eye is essentially “overflowing” with liquid because that drain is all clogged. Thus, the major eye pressure and the unbelievable pain.
So, the next obvious question is: why can’t they just fix the ‘secondary glaucoma’ and let Amy get on with her life?
Great question. The problem is they will not operate on Amy’s eye until the final pathology report comes back from Wills Eye Institute. If the report shows ‘malignant seeds’ left in the eye after removing the tumor, a surgery could move those around and give Amy a greater chance of her cancer spreading to vital organs. See the ‘Catch 22′ here? The Doctor turned to Amy today and said, “Your case is very complicated and delicate. We must move carefully.” So, now we wait. Amy is on multiple drops to work on reducing the pressure and has finally found the ability to sleep using a magical combination of Loritab and Phenergan. We are back at Vanderbilt first thing in the morning to check her pressure and see if we know any of the ‘next steps’.
Thanks for your continued prayer and support.
(written by Brian)
We were reminded today that Amy’s recovery and treatment is now on two separate paths. The first path is the one dealing with “the cancer” and will include Oncologists ,PET scans, etc. The second path, and the one immediately in front of us, is connected to the healing of her eye and the potential vision loss.
This morning we walked into the first post-op visit with Amy’s Doctor here at the Vanderbilt Eye Institute. The appointment started with some encouraging signs with Amy’s vision and her ability to read letters at a distance using only her right eye (not so much the ones right in front of her, though). The Doctors started filing in and looking at her eye and finally Dr. Tran, Amy’s primary Opthamologist, entered the room and started talking in her straightforward style. Dr. Tran is the one who first diagnosed Amy with Ocular Melanoma. She told us that there were some ‘post-op’ issues connected to the ‘chamber’ between Amy’s cornea and iris. We were immediately moved to a Retina Specialist in the same office to diagnose and correct the issue.
I have never been much of a Science guy but will try to explain, in the best of my lay ability, the anatomy of the eye and the issues Amy’s eye is having.
Your eye is divided into the cornea, iris, and lens with a chamber separating each area. This chamber fills with fluid to keep the three separate pieces of your eye from pressing against each other. Evidently, the pressure in your eye can dictate whether your chamber fills up with that liquid (very rudimentary explanation but it’s what I heard today) and a normal eye pressure, when measured, is between 10 and 20. Amy’s right eye was measuring at 4 this morning and they explained to us the chamber between her cornea and iris was flat and did not have any liquid in it. This means that the cornea and iris were pressing against each other – and that’s not good. When this happens, scar tissue can form and that scar tissue can result in blindness in that eye. We were told Amy needed a procedure right away to synthetically add liquid to her chamber, thus increasing her eye pressure. The procedure was minor but was needed immediately to stay away from the potential of developing scar tissue.
Amy is back home and resting, even though they told her the eye may feel like it has ‘rocks in it’. We have to return to Vanderbilt every day until the pressure increases on its own. The Doctor that performed the procedure said she anticipates having to do the procedure again on Friday. Amy said the procedure itself was not overly painful (even though it involved a needle being inserted directly into her eye) but the set up is incredibly claustrophobic. She regrets not taking the Valium when it was offered.
We are praying the pressure starts to increase on its own very quickly and her eye can start to heal. Thanks for praying and we will keep you updated as we know more.
My eye hemorrhaged yesterday. It looks REALLY pretty now. No pain or drainage, just completely red. I’ll spare you the pictures, but we did take one for my cancer memory book:) My ophthalmologist is not worried about it. I’m not sure how bad it has to get before she worries about it.
So far, I’ve had no pain. I’m amazed that I can have a hole cut in my eyeball and have no pain. My vision was tested the day after surgery and was 150/20. I was so happy that I could see that it didn’t really matter that all I could read was the big E and the line after. I was reading with a hole in my eye!
I keep my right eye closed now, because the drops make it blurry. When I open both eyes, my left tries to adjust as well and I can’t see anything. A blind spot is not easy in this house as kids are everywhere and things can be flying through the air at any moment. I ran into Phillip today and almost sent him to the floor.
Some of you have asked about radiation. My surgeon felt confident that no radiation would be needed, but left a little wiggle room for a very slight possibility.
I’m not allowed to drive yet. I told Olivia that she could be my right eye when I do get back into the driver’s seat. She looked scared, and I don’t think that she’ll do it for me. Teenagers. You’d think they’d enjoy living on the edge like that. That leaves me at the mercy of my awesome husband/nurse to drive me around.
Tomorrow, I have an appointment at Vanderbilt and we’ll let you know if we learn anything new. As always, thank you for praying for us. We feel them everyday.
(written by Brian)
We just returned from our post-op visit with Dr. Shields and have a few more answers but several of the remaining major questions won’t be answered for a few months. I’m a ‘list’ sort of guy so I thought I would answer the most commonly asked questions we have been getting via email/Facebook so we could keep everyone informed.
How is Amy feeling?
This is easily the most asked question and most important right now. Amy is actually feeling decent this morning. She is still very tired and weak from surgery but wanted to walk the 5 blocks this morning from our hotel to the Wills Eye Institute. There are several stitches in Amy’s eye and those are giving her the most discomfort. Her nausea is starting to go away and we are going to try to eat at a nearby restaurant later so she can spend some time out of the hotel.
What did you find out at your post-op appointment with Dr. Shields?
There was very little new information this morning but, according to the slew of Doctors looking at her, the eye looks good and the pressure is stable. All of that means we can fly home to Nashville tomorrow morning.
How much (and what kind) of vision loss will there be?
This is one of the big question marks that won’t be known for weeks, maybe months. The vision issues she is experiencing now are mostly connected to the surgery and the 5 different medications we have to put in the eyes every few hours. Every eye reacts differently to this surgery and we will have to wait and see how Amy’s eye reacts as we move forward.
Did you receive the pathology report?
No. We were told this morning that it could be 2 weeks before we hear the final results from the pathology report. However, the statement that followed that news was, “We don’t expect there to be any surprises on that report. Some tumors leave room for questions, yours does not.” That means they fully expect the report to state that the tumor is a ‘low-grade malignant melanoma’. If that is the result, we will find an Oncologist in Nashville that will begin the process of scanning the rest of Amy’s body to make sure the cancer has not spread. When we first began this process we found places that put the rate of metastasis at 50% over the next 10-15 years. That percentage does not hold for Amy based on the size of her tumor, location, etc. We don’t know for sure but feel confident that they will estimate her chance for metastasis at less then 10%, with a real possibility it could be lower than that.
What are the next steps and how long is recovery?
We will fly home tomorrow and Amy has been released to her Opthamologist at Vanderbilt. We will begin those appointment next week and will continue every 2-3 days until she deems Amy recovered. Amy has to wear a shield over her eye for the next several weeks (think Bono’s glasses without the tint) an has a shelf full of eye drops to use for a while.
How rare is this type of cancer?
There are 2,000-2,500 cases of Ocular Melanoma diagnosed each year in the United States. However, only 3%-10% of those are tumors that appear in the iris like Amy’s. That means she is in a group that could number less than 75 patients a year for the entire United States. Her age only enhances the rarity of her cancer since the median age for Ocular Melanoma is almost 20 years older than Amy. We asked one of the visiting Doctors at Wills today how many local resection surgeries are done each year by Dr. Shields. He said he had been here over 2 months and this was the first one he had seen. In fact, he thinks there are only 5-6 done each year. To say Amy was a rare case might be a small understatement.
Do you need anything?
I couldn’t come close to articulating a ‘thank you’ to all of the people who have prayed and supported us through this. We still have some more of this journey to travel but we have been blessed to have a community of people taking care of us and praying us through every step of the way. Our families have been tremendous through this and I can’t imagine the last 5 weeks without the support of both sides of our family. We also have an amazing church family at Wellspring who defined what community is supposed to look like and have been feeding our children (and my parents) while we have been in Philadelphia. I know that social media can be used for alot of different things but I’m certain there is not a better usage than the lightning fast prayer chain that it has been for us this month. The answer is no, we don’t need anything. And that’s because all of the amazing people around us have already done it.
Thanks again for your prayers and we will update again once we get home tomorrow.
I am going to retract my statement about Philadelphia that I made in my first post. This is a great city. It is like a less crowded Manhattan. We walked the streets today and visited historical sites. Saw the Liberty Bell, Betsy Ross’s house, and the National Constitution Center among others. We signed the Constitution and took some funny pictures with statues, like you do. I’ll post some when we get them all loaded to our computer. We have yet to see the Rocky steps, but it is late now, and I’m not sure how I’ll be feeling on Friday. We may save that for a future trip.
The visit to Wills was positive. We had studied our options before coming, so the decision to have surgery was an easy one. I was not, however, aware that my eye will never look the same. That took me by surprise. I woke up this morning, and in my haze, I was ready to cancel and come up with another alternative. There is no other alternative. This team of doctors is ready to save my life, and I will exchange a diseased eye for a disfigured one.
We’ll be at the hospital at 6:15 tomorrow with surgery scheduled for 7:30. It is an outpatient surgery, so I’ll be released when I can walk in a straight line.
Today, I’m especially thankful for my family and friends who actively carry this burden with me, for the privilege of being able to talk to God, and for the gift of good vision for 37 years.
