2-month post-op update - addendum

Dr. Rumery called me back to ask that I come back in so he could test the pressure in my eye (a quick and simple test) so we coordinated and somewhat sketchily / awesomely met up at the Dean Clinic on the West Side after hours to get me checked out before he went on vacation (thanks again, Dr. Rumery, for being so flexible and awesome!)

For those interested, after a numbing drop, Dr. Rumery used a hand-held applanation tonometer, which I find to be vastly preferable to the puff of air method:

It didn't look exactly like this one, but this picture was too awesome not to include

Anyways, good news:

• left eye: 8 mmHg (the one of interest)
• right eye: 11 mmHg

Background on this measurement and why it matters from the Ocular tonometry wikipedia page:

Tonometry is the procedure eye care professionals perform to determine the intraocular pressure (IOP), the fluid pressure inside the eye. It is an important test in the evaluation of patients at risk from glaucoma.^[1] Most tonometers are calibrated to measure pressure in millimeters of mercury (mmHg).

It's all in the genes

As part of the surgery to implant the plaque, I opted into another procedure called a fine needle aspiration (FNA) biopsy. It's exactly what it sounds like. The idea was to:

1. confirm the original diagnosis and 
2. find out more about the tumor (such as its likelihood to metastasize or kill me)

The first was quick to determine: the cells from the biopsy were consistent with a low-grade melanoma. Glad we did that whole plaque thing then :)

The second required more lengthy analysis. 3 chromosomes were analyzed: 3, 6, and 8. The results for chromosomes 3 and 8 were normal ("disomy"); chromosome 6 was "amplified," however apparently this region of chromosome 6 (6p and 6q) is not correlated with increased risk of metastasis (which begs the question why are we testing it, but I'm sure this result was heavily diluted for the lay person so the question is moot). It seems that monosomy of chromosome 3 or amplification of chromosome 8q are changes that are associated with an increased risk for developing metastatic disease. *Whew*, amirite?

TL;DR: based on genetic makeup alone (i.e. discounting size and location of tumor), there is a low risk that this will metastasize elsewhere for me.

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Some definitions from the result materials I received:

Chromosomes: visible rod-like structures in each cell of the body that contain genetic material. Normal human cells have 23 pairs of chromosomes. The chromosomes are in pairs (two copies) because one copy of each chromosome is inherited from your mother and father. There are specific genes located on each chromosome, and the number of genes varies for each chromosome.

Somatic: refers to genetic material that is found in a specific tissue or cell-type in the body. In genetic testing, when a DNA mutation is defined as a somatic mutation, there is very little risk of passing on the mutation to children. Most cancers have somatic mutations meaning a mutation occurred in a single cell that disrupted normal cell growth, which allowed a tumor to grow.

Disomy: refers to the normal number of two copies of a chromosome.

Monosomy: refers to an abnormal number of only one copy of a chromosome.

2-month post-op update

Ok, it's not quite 2 months, but due to scheduling stuff, I had my 2-month post-op with Dr. Rumery today.

Stuff we discussed:

My current meds

1. Tobradex Ophthalmic ointment - 3x/day, this is for comfort and as an antibiotic
2. Atropine - 1 drop daily before bed, this is to keep my eye dilated*

*Why are we keeping my eye dilated? Great question! This helps to prevent synechia. Basically, after surgery or other eye trauma, it's possible for your iris to become sort of stuck to your lens (in my case) or cornea. This is bad because it can cause pressure that can led to glaucoma. Keeping my eye dilated means my iris is a bit more withdrawn from the lens, at a position where it's at a slight distance from it and therefore less likely to become stuck.

My vision

Pretty good! With glasses for correction, my right eye is at 20/20, which is expected. My left eye is still not back at 100%. I've been worried about this, but this visit reassured me a bit.

You're probably familiar with an occluder (see image below), even if you don't know it by name: it's the thing you use to cover one eye so you can use the other for a vision test. They had a nifty one at my eye doctor that had a flap that rotates into place over the eye of interest, adjusting the opening from a Sacagawea dollar-sized hole to a series of pinpoint openings. This is awesome because it reduces the amount of light entering your eye. Meaning...

*drumroll please*

It simulates your eye in a non-dilated state! In other words, looking through the occluder with this flap engaged meant I was seeing as I would if my eye weren't dilated. And hearteningly, this improved my vision a LOT. While I'm not at 20/20, I'm close. This alleviated my worry that maybe I wasn't recovering well, or that my cataract was already brewing.

Fancy occluder

My retina and overall eye health

Pretty good! Nothing in particular of note, in either direction.

My cornea moisture

After putting a drop and some yellow (fluorescein?) dye in my eye, Dr. Rumery examined it using blue light, with which the dye is most visible. The idea is that the yellow dye attaches to areas of lower moisture on the cornea, meaning those areas are dry and perhaps indicative of poor corneal health or recovery. Good news: while I had a couple of areas that showed up under the blue light, they were small and faint. This isn't worrisome.

Bonus: for those who looked at the surgery pics, there was one where I was not at all sure what layer was sewn shut. Well, mystery solved: it was the conjunctiva, which is a layer on top of the white part of your eye (the sclera) that helps with lubrication. It doesn't normally extend over the iris/cornea, but was stretched to do so during the time I was wearing the plaque (apparently). Anyways, ♪♫ The more you know! ♫♪

I've gone back and updated the photos post with this info, too :)

[Trigger warning] surgery photos!

The post you've all been waiting for!

Warning level: EXTREMELY graphic. If you don't like blood, needles, sutures, or thinking about things touching eyeballs, do not click the Read more link.

Before photos (teaser)

Warning level: vanishingly small. These are close-ups of both of my eyes pre-surgery. More (and more exciting) photos later!

Back at work!

Today was my first day back at work. I'm a bit tired but it went well.

Thanks all for your comments on earlier posts; I really appreciate all the good thoughts and vibes :)


Stay tuned for pics of my eye and even some taken during surgery (!)

More than a week later

My eye continues to feel better over time! I've come to think of this in three ways:

• Pain/discomfort: currently it's only minor discomfort, and I'm no longer noticing an improvement each day though it is definitely net better and hasn't gotten worse. I think most of the discomfort stems from there still being stitches in my eye, which I definitely feel when I blink and which my eyelids are no ok with (it just feels like there's something in there...which there is, so that's consistent).
• Vision: still blurry. This doesn't seem to have improved since, like, Saturday or Sunday. And every time I put antibiotic ointment in my eye (3x or more daily) it immediately makes things worse vision-wise, so this is a tricky one.
• How it looks: this is the one that's still noticeably improving each day. As my eye becomes less swollen, the stitches appear to be farther and farther from my iris / cornea. My eyelids are almost back to their normal level of open-ness (they were droopy from disuse before).

Anyway, I want to share pictures but I don't want to make anyone uncomfortable! So we'll start with some simple cell phone shots of my eye, which you can find by clicking the Read more link below.

Warning level: mild. These are close-ups of a super-red eyeball with some stitches in it. No gore (yet)!

So how does it look?

At first, like the gaping maw of some evil sea creature.

Now, a bit better. People say it looks better than they'd anticipated; it still looks terrible to me.

My pupil is larger than usual. There are stitches at 12, 3, 6, and 9 o'clock, about 1-2 mm outside my iris. My eye is white (ish) from the pupil out to this radius, but outside that, it's VERY red and lumpy. My eyelids are out of practice and so droop closed a bit.

Most importantly, though, I can sort of see! It's very blurry and I don't like it to be super bright out, but I can use my left eye a bit. Things should continue getting better and it should both look and function much better next week.

I will almost for sure get a cataract in this eye, which they won't correct for 2-3 years to make sure it's not caused, nor is it causing, any other complications. That will make my vision fuzzy as time wears on.

Anyways yesterday I bought some prescription sunglasses (as I won't be able to wear contacts for 2-4 months) so that's fun.

As I type this, I'm at National airport waiting for my non-stop flight back to Madison. So get ready to visit me!

Why I smell like a salad

I removed the patch this morning!

My eye was truly disgusting. I wiped the guck away and running water over it in the shower was truly wonderful.

My face was a different story. It was covered in guck from two eye patches designed for multi-day wear. I enlisted my mom's help and was proud to see her immediately turn to google. The consensus seemed to be a cotton ball dipped in olive oil and squeezed out, followed by a warm wash cloth with a few drops of dish soap. (The Internet also recommended a third step of acetone-free nail polish remover but that was right out as it was getting nowhere near my eye.)

I lay down on the kitchen counter under bright lights so we could get started. The first part (olive oil) was safe anywhere and we began immediately. Thus the title of this post. The second part (soap) was safe only for parts of my face nowhere near my eye (no soap allowed in there!); in fact in some places we used baby oil only.

Eventually, I was able to touch my face without my hand becoming permanently affixed (before this treatment we were talking inch-long tendrils of adhesive...). Victory!

A waiting game

The patch I'm wearing now is much smaller than the one with a lead shield under it, and I'm in much less discomfort; no pain meds since the plaque removal. It's a bit itchy under there and I can tell its oily and gross. Also, if I situate things just so, I can open my eye under the patch and and see daylight at the edges. 

Looking forward to taking this patch off tomorrow morning :)

Aftermath

IT'S OUT!

The surgery went well. Here's what's next:

• I wear a much smaller patch (lead-free) until Wednesday morning
• Starting Wednesday, I begin using drops:
• Dilating drops nightly (to ease pressure)
• Antibiotic drops 4x daily
• I fly home to Madison Thursday evening
• I begin being able to see well sometime next week ish
• I can drive again in one week
• I can lift 25+ pounds, resume strenuous activity, etc. in two weeks
• The stitches in my eye dissolve in the next 4 weeks, at which point my eye will begin looking better (less red / swollen)
• I see my referring physician for follow-up examination etc. in 2 months and 4 months
• I get results of genetic testing (to determine likelihood of metastasis) in 8-12 weeks

So that's it! More details on all of this (hopefully including photos!) in the coming days and weeks.

Almost there...

I've almost made it! The surgery to remove this thing from my eyeball is scheduled for 12 PM Eastern tomorrow and I can't wait.

I've spent the time since the first surgery doing...not much.

Turns out it's pretty uncomfortable to read or do anything that requires eye movement; my left eyelids are sewn shut on top of the plaque, meaning when I move my left eyeball it moves underneath the eyelids and sutures. Sometimes this is uncomfortable; occasionally it's painful.

It's also uncomfortable to be near bright lighting. Such as...the huge [seeming] windows in the restaurant at breakfast. This screen, even with the brightness turned way down, is kinda bright. So yeah, that's why I haven't blogged much :(

Anyways, I've caved and have been taking the Tylenol with codeine as well as Aleve...the discomfort is real.

I'm looking forward to having nothing sewn to either eyeball! And to having this patch off and being able to shower all of me, not just neck down!

One-liners

"Oh don't worry, we'll just put a plastic bag over her head." - My mom, jokingly, when the surgical coordinator told me I'd need to shower neck-down only while the plaque was on

"You'll make an excellent PB TS." - Joe Adams  (lead = Pb, which reminded him of the professional billing team...you know, even he admitted it was a stretch)

"So are you going to listen to that Imagine Dragons song on repeat all weekend?" - My brother, hilariously referring to the song "Radioactive"

Upshot

So...I did it. In spite of the last-minute second opinion curveball.

Here's why:

• Yes, my limbal stem cells are at risk, but...
• Apparently limbal stem cell damage is not super common, and Dr. Shields likes to deal with it if it arises, rather than act proactively with something like a pre-emptive limbal stem cell transplant
• The dosage is a bit lower than the other doctor had predicted

The main things I wanted to make sure of were that:

1. My age was being taken into account
2. A plaque covering my entire cornea was deemed necessary

I am reassured on both counts. Here's why:

Even with a full plaque, patients tend to tolerate the radiation well, and irreparable cornea damage is not too common

The reason we went with a full plaque is due to the type of melanoma we seem to be dealing with. My iris melanoma is diffuse (as opposed to nodular), meaning that cells can easily shed to other parts of the iris. This means that it's not necessarily easy to tell whether a slightly darker area of my eye is just darker, or is the result of cells that have shed from the main affected area. It's especially tricky to deal with these shed cells in what's called the angle, or the part of the eye where the cornea meets the iris (see images below if you're having trouble picturing this). Having a 15 mm plaque means we're irradiating that edge (since a typical iris / cornea is 12 mm), giving us a better chance of catching it all.

So yeah, I went through with it! And I'm uncomfortable :(

The angle is where the cornea meets the iris.

Maybe easier to see in this less-cluttered diagram.

After pics + update

Here's the update; it'll be a series of bulleted lists because I can't really see very well :(

• I went into surgery around 12 PM and got out around 1 PM
• I hung out in recovery for a half hour before I was ready for my mom to visit and to eat food (food = grape juice, pretzels, and fig newtons)
• After another half hour they took the IV out and I was able to get dressed
  
• By 2:30-ish, we were in the hotel room at the Hilton Garden Inn on 11th and Arch
• Mom got me a chocolate chip cookie at Reading Terminal Market and luckily also picked up some milk :)
• We ordered room service for dinner

More lists below, since I like list making :)

I have prescriptions for the followig meds in case I need them:

• Tylenol with codeine - for pain
• Ativan - for anxiety (e.g. itchiness / "get this sh*t off my eye" sort of feelings)
• Zofran - for nausea

Apparently day one is the worst, and if you can avoid taking the meds, you'll be happier, so I haven't even filled these scripts yet. They said if you have a decent tolerance for pain, this should be doable, and I do have a high tolerance for pain; I've taken some regular Tylenol so far but not much more.

Here's the plan:

• Thursday (post-surgery - apparently the worst, pain-wise)
• Had a doctor visit to check in
• Sleep recommended, so that's what I've done until like 6 PM
• I put a contact in my right eye (glasses have no hope of staying on; see below for  a pic) so I could watch some TV
• Likely going to bed around 10 PM Eastern
• Friday
• Will have another doctor visit before noon
• My plan is to watch TV, read, do some internets, maybe listen to some music or podcasts, etc.
• Saturday
• Will have a doctor call to check in
• If you're in town, text or call me or my mom to coordinate a visit!
• If you're pregnant, you're not allowed
• Otherwise, you can come over and hug or touch me once or twice, then stay 5-6 feet away
• Otherwise, same TV/reading/listening plan
• Sunday
• Will have a doctor call to check in
• Otherwise, same TV/reading/listening plan
• Monday
• I'll be on an 8 AM shuttle back to Wills Eye for the plaque removal surgery

I'm radioactive!

Fashionable lead shield (under the gauze)

Key selfies

Last time both my eyes work perfectly

Last good strong left eye rub for a while (probably)

Second opinions

I got a second opinion today that threw me for a bit of a loop.

A doctor at Cleveland Clinic (my mom did some research and used some connections to get me a name, then my doctors at Dean and Wills provided him with info and imaging about my case) got in touch today.

The results can be divided into two parts: yay and ...


Yay:
He agrees I have a melanoma. This was the main reason I reached out in the first place, so yay.


...: 
He's worried about my treatment plan. I'll have a 15 mm round plaque over my entire cornea, seeded throughout with radioactive seeds. This means my entire cornea will be irradiated, including my limbal stem cells. Limbal stem cells help the cornea stay healthy.

In short, if my cornea is damaged badly enough and my limbal stem cells are fried, they won't be useful in helping my cornea heal.

Apparently there's a way to extract limbal stem cells before plaque radiotherapy or proton beam irradiation and replaced afterwards to promote healing. He recommends not only that I have this done, but that I have bean irradiation instead of a plaque because the dosage to my cornea will be lower.

I now plan on doing my best to discuss this with Dr. Shields before my surgery tomorrow to make sure that our plan takes my age and corneal health into account (especially because of my age -- I'm younger than many patients with this thing -- I have more time to suffer from a severely damaged cornea should that be the result). I also want to confirm that covering the full cornea, as opposed to part of it, is something we're pursuing due to the danger of a diffuse iris melanoma like mine shedding cells to other parts of the iris.


Aaaaanyway, I'll try to blog before I go in tomorrow; even if so, you, dear readers, won't know the outcome of this line of inquiry until later in the day. I'll have Schrödinger's eye (is it covered in a radioactive implant or not?! BOTH) until I post again or you text me (or if you have her number, my mom).

Roller coaster of emotions

TL;DR: surgeries are happening as scheduled!

Details:

I spent much of Monday on the phone. The short version is below (believe me, it could be longer...as my notes prove, because I'm a note-taker). Hit the jump for the blow-by-blow.

[My thoughts will be denoted thusly]
 

Home, James, and don't spare the horses

I'm now at my parents' place in Maryland; landed tonight.

The plan (stay tuned as there's a finite, significant chance that this will change - more on that later):

• 4/25 - Drive to Philadelphia tonight; stay overnight
• 4/26 - 
• Get ocular testing (examination, ultrasound, photos, etc. - same as in Madison and as last time I was in Philadelphia) - this is needed because I wanted long enough after my biopsy that things may have changed
• Drive back to MD in the evening
• 4/27 - 
• Take the train to Philadelphia in the evening, or maybe the next morning depending upon surgery timing
• 4/28 - First surgery
• 4/29 thru 5/1 - Stay in pre-determined hotel and be a bit bored
• 5/2 -
• Second surgery
• Take the train back to MD
• 5/3 - 5/4 - chill in MD
• 5/5 - Fly back to Madison

The reason this is subject to change is that based on conversations I had with various parties last Thursday and Friday, as well as this morning, I do not anticipate getting a prior approval for either Tuesday's tests or the surgeries themselves before they're set to occur.

So it's likely that I'll be flying back to Madison on Monday or maybe Tuesday night, rescheduling this all for 1-2 weeks from now.

FML[A]

Today I had to pay $25 for the Philadelphia doctors' office to sign an FMLA form. This feels wrong :(

Sorely in need of updates

Sorry I dropped off planet earth! How about some FAQ to make it better?

How will you be spending the days you have the plaque implanted?
I'll be confined to the hotel my doctors recommend (including for meals); except for eating, I'll be in my room. I'm thinking these days will consist mostly of:

• Podcasts*
• Movies*
• Catching up with those of you I don't talk enough with :)

 *Recommendations welcome (use the comments!)

Will you be radioactive?
Not externally; the dosage will be comparable in radiation to that of a single chest X-ray, which is to say not much. My mom will be staying with me; she's allowed to share a room with me and stuff :)

What won't you be able to do?
Lots of things:

• Leave the hotel
• Yoga
• Heavy lifting
• Bending at the head (I can bend at the knees, however)

Do you have a superhero costume lined up?
No. Volunteers welcome :)

Will you have x-ray vision after this?
Yes.

I live in Madison/surrounding area. Can I help when you return?
Yes! I won't be able to drive right away and am sure I'll want company; I'll figure out a system for organizing this as it gets closer.

I don't live in Wisconsin. Boo.
Agreed. Visit me! Wisconsin is lovely in the summer, and I just moved into an adorable new house (just renting) with a second bedroom, now equipped with a real live bed :)

Scheduled!

Plaque implant: Thursday, 4/28
Plaque removal: Monday, 5/2

I expect this time period to be very boring :)

I think this is a solved problem

I just called to schedule my surgery and the coordinator will be calling me back.

Why?

My chart is missing; she's not sure which doctor has it, but she has to track it down before we can schedule anything.

...

Details & plan

The exact wording the pathologist used was that the results of the biopsy are "suspicious for melanoma."

He therefore recommends plaque radiotherapy. Not sure what that is? It goes something like this:

<Philadelphia>
On a Thursday: I have surgery to have a radioactive piece of metal ("plaque") sewn to the surface of my eyeball over which I'll wear a lead patch (!)
On the following Monday: I have surgery to remove the radioactive plaque
</Philadelphia>

<Recovery>
Week 1: no driving
Week 2: no strenuous activity (no lifting anything more than 25 lbs), pools, or saunas
</Recovery>

I may have blurry, doubled, or distorted vision right away; I also may have flashes or floaters. These should subside as my eye heals from the radioactive intrusion.

I'll have follow-up appointments:

• at 2 months: here in Madison
• at 4 months: back in Philadelphia

Then, over the next year:

• I will develop a cataract
• I may develop cornea damage

I'll do a post on the science of plaque radiotherapy later (maybe). Nerds out there, this will have to suffice in the meantime:

• Radioactive Plaque Therapy
• Eye and Vision Sparing Radiation Therapy for Intraocular Tumors

It's not a first date!

"It's not a first date. When your doctor calls you at 6 AM to tell you that you have cancer, and then you call him back, he should pick up the phone!" - Andrew

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In the course of all this, there are certain to be amazing quotes. I usually keep a private quote book; in this case I'll share relevant, notable quotes with the tag "quote."

Welcome

This morning I found out I have melanoma in my left eye. I figure that there will be many people with questions about this -- many more than I can call and keep up-to-date consistently.

My mission:

• To easily keep everyone informed
• To share information about what is possibly the most bad-ass cancer treatment I've ever heard of*

 Let the story begin.


*more on this later :)