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 :)