The waiting really is the hardest part. A number of friends have suggested that I get something from the doctor to help me sleep. You know what the doctor can give me to help me sleep? Results! But we found out yesterday at Mayo that no one is exactly sure where my results are (!). I had to battle with my primary doc’s office last week to even get the tests scheduled because they couldn’t find the orders (turns out they were sent to my obstetrician. Of course.), and now they can’t find the results. Rich called the scheduler at the retina specialist yesterday and she said she’d try to track them down, but it was the end of the day at that point. The oncologist’s nurse said that if we don’t show up to Wednesday’s appointments with the results (not just the films, the radiologist’s report), they’ll have to repeat the tests. I really don’t want to spend another 45 minutes stuffed in a tube (and I doubt our insurance would be excited about it either), but more than anything, I just want to know. The waiting is eating all of us from the inside out.
Which brings me to finally telling you about ocular melanoma. At this time last week, I had never heard of it. Now it consumes my every waking thought. Yesterday we briefly talked with my oncologist’s nurse. As she tapped at the computer, she asked, “So I assume you’ve been on the internet?” “Of course.” I replied. “Don’t do that anymore. It’ll scare you,” she replied, not looking up from her typing. Yeah, too late. I’ve looked it up, and it is indeed terrifying. I will share what I’ve read from reliable sources, but keep in mind that I haven’t spoken to my oncologist yet, and he is supposedly world renown in this field, so his information will be more accurate and complete than what I’ve learned courtesy of google.
(and after rereading this, I’m almost thinking this is drinking game material – drink every time you read the word “metastasize”…)
Two things about ocular melanoma: 1. It is extremely rare. It affects 6 out of every 1 million people (and I can’t win the lottery…), and 2. It doesn’t spread like other cancers, and that’s what makes the issue of whether or not it’s metastasized such an important point. If it metastasizes (and there is a 50% chance it will), it travels through the blood, not the lymph system. This makes it impossible to stop – you can take out lymph nodes, but you can’t take away the blood that is spreading the cancer. Bluntly put, once it spreads there is currently no cure. With aggressive treatment, patients can gain some years (“good years!” one website cheerfully promised), but technically it’s stage 4 at that point. This is the main reason I’m freaking out about the results of my tests. I want to know if the clock has started ticking or not.
Now, the flip side of all of this is the other 50%: it’s really good. Awesome, even. Apparently these tumors fall under two genetic classes: Class 1 (divided into 1a and 1b), which will most likely never metastasize, and class 2, which will almost always metastasize. There actually is a way to test the tumor to find out its genetic makeup, and Mayo does offer the test, so at some point I expect to know which kind I have. I don’t think that is something that will come soon though, and that’s fine. Right now I just want to know where we’re starting from in this battle. If my tests show nothing has spread, then we can focus on going after the tumor (more about that in a bit). I think it’s during my first surgery that they’ll do the genetic test, and I’ve read that results can take up to a month. But that’s fine, one thing at a time. And the thing is, in patients who have the aggressive, spreading type, things might not metastasize for years. I read (yes, on the internet, where I’m not supposed to be) of patients whose cancer didn’t metastasize for 10 years or more. And they’re learning more and more how to aggressively monitor and treat people whose OM has metastasized. So while it’s bleak, it’s definitely not hopeless.
I, of course, am hoping to fall in the 50% of patients with the “good” kind, so let’s talk about that. In this case, we go after the tumor, then go on with life. I’ll have significantly reduced vision in my left eye from the radiation, and have to have regular scans just in case something funky happens, but life would be pretty fantastic.
How do we go after the tumor? It’s called brachytherapy, and basically involves placing a metal plaque containing radioactive seeds onto the tumor. It looks like a bottle cap and is held in place with temporary sutures. Then, I sit there (in the hospital, I don’t get to go home in between) for 5 days, before they surgically remove it and send me home. I’m currently scheduled for my first surgery on Dec 18, so I’ll be in the hospital until Dec 23. I was relieved to learn yesterday that the surgeries are done under general anesthetic. Because I’m pretty sure I don’t want to know how they plan to get that plaque in place. Due to the radiation, children under 18 and pregnant women can’t visit me, but anyone who wants to make the trek down to Rochester is welcome to come. I think I’m going to be really bored, so I would love company.
So there, that’s our lesson for today, Ocular Melanoma 101. Once again, let me offer the disclaimer that I’m not a medical professional, so I may have gotten something wrong. I’m a doctor’s worst nightmare: a patient with a vivid imagination and access to google.
Emotionally, we’re all doing the best we can. Riley will be going to his friend’s funeral today, so please keep him in your prayers. He is, however, talking with me a lot about his feelings, which I think is really healthy. Rich and I are still struggling to sleep and eat, but I really think things will be better once we know something. Even the worst news is better than the unknown at this point. It’s difficult to figure out how Tessa is handling all this – for as talkative as she is, she tends to “stuff” things that are really stressing her out. I know it’s upsetting her, but I don’t think she’s found a way to express it yet.
Just praying for grace and peace as we wait. I love the song “Strong” by Pocket Full of Rocks…
There are shadows of things unknown
And fear can whisper with a voice so cold
But I know Your hands won’t let me go
I hear You say, “You’re not alone,”
We know we’re not alone. We have God walking this alongside us, and we have the most incredible friends and family surrounding us with love and prayers. We are grateful for all of you.