Friday, July 28, 2006

Nobody knows but me and my stuffed monkey...

It can't be good, can it?

When you're forty, and you have a good job in a great place, but you're home on the sofa on a week day?

It can't be good, can it?

When you're forty, and you wake up at 4:30 in the afternoon on Friday, in a dark living room, dazed, clutching a stuffed orangutan like a lifesaver?

It can't be good, really.

When you're forty and you find out the only thing that can possibly save your rapidly failing vision in one eye is a drug FDA-approved for cancer treatment.

Injected directly into your eye.

Once a month for many months.

At $60 a shot.

When you're only forty.

"Ms. Merujo, I'm afraid that, despite the laser surgery, the blood vessels have continued to grow. The blister is now at the center of your vision, and, because of its size, it's more defined..."

"The only course of action is a series of injections. Drug X is most effective, but it's FDA-approved for the elderly only, so your insurance won't cover it. If you want to pursue this treatment, it will be $2000 an injection... there is a cheaper drug, related to Drug X... it's almost as effective... $60 a shot... also not covered by insurance... unless you have $20,000 at least to pursue using Drug X, I recommend the $60 shots."

"At least 8 months of injections..."

"There's a risk of stroke..."

"There is no guarantee..."

"I know this sounds horrible - injections directly into your eye - but the only other option is blindness..."

"I don't want to wait. Let's schedule the first injection for next Friday."

"As this is a controlled cancer drug, it has to be ordered from a pharmacy and delivered directly to you. Then, you'll bring it in to the office for the injection..."

I came home, e-mailed the family, and then slept a little.

Then, the phone rang.

"Ms. Merujo? This is Doctor D's office. The doctor has reviewed the photos of your eye with some colleagues. They feel that next Friday is too late to begin. We'll get the pharmacy to send out the drug immediately. Can you come in Tuesday morning?"

What choice do I have? Needles in my eye or blindness?

"Thank you. I'll be there."

I returned to the sofa, but this time, I stopped en route and picked up the big, soft, friendly stuffed orangutan on my bookshelf. I slept in a fetal ball for two more hours, the orangutan at my side. Stupid, but reassuring.

So, I have another weekend of peeing electric yellow fluoroscene and a jaundiced face from the eye tests & photos today, as I wait for a pharmacy package.

Cancer drugs.

To take willingly to a man to shoot into my eye.

For months.

And months.

And months.

I'm ready to get off this merry-go-round. I really don't like the music it plays.

8 comments:

radiocynic said...

Well, crap. And we your blog fans and friends don't want things to keep getting worse for you with each successive post either.

For whatever it's worth, please know that there are a bunch of people out here in the Internet-ether, pulling for your success all the way, and looking forward to reading about your progress and improvement with this.

I guess that really can't be all that much help under the circumstances, but it's all I've got to offer. Sorry that eloquence so often fails me, and very sorry to hear that you have to go through this.

Wishing you the very best of success with this treatment.

Washington Cube said...

This whole thing makes me ill. I know I haven't been having a great year, but yours has been flat out from hell. There is not one thing I can say about any of this that will lift the nightmarish aspects of any of it. Once you do feel a little better, and I do believe you will, you need some flight of fancy--something that gives you as much joy as say, a Thomas Dolby concert.

Heather Meadows said...

Man.

This sucks.

I am so sorry.

*big hug*

I was thinking of trying to find a support group online, but you never posted the name of your illness. I googled the symptoms, but this article lists two different things: wet macular degeneration and diabetic retinopathy. So I didn't know which one to look for.

Some information on Wet AMD (I'm not sure you're old enough to have this one)

Some information on diabetic retinopathy

Yours might not be either one, but that's what I found...you probably found this stuff already, though.

I just wish I could help in some way.

Elizabeth cheesecake Montgomery said...

Suckfest 2006, this must be the dance mix version of the original Suckfest. I would be your stuffed monkey, if only I were there.
I will be clutching a chicken, waiting anxiously for good things to happen to you soon. My friend at work who lost all but a little periperal vision in her left eye from histoplamosis, still drives. She has to have an extra side view mirror on the left side and has to drive with her glasses. She is an Intensive Care nurse and actually our charge nurse, and has adjusted to be able to work on the computer and read our shitty monitors from across the room (which I have a hard time with). Keeping fingers, eyes and toes crossed........where have I heard that before? By the way, it was disturbing this morning to hear "They might be Giants" performing on Blues Clues.............
WTF-nurserachet

Claire said...

Yikes.

Well... it's better to do what you can while you still have vision. For most of my life, my grandmother was blind. Hers was different, gradual, she saw me as a baby and then that was pretty much it. Treatments changed, she had surgeries later, but they didn't help because it was too late.

It totally sucks, but I'm all for attacking it now with whatever vengeance (aka meds/treatments, scary or no) you can manage.

Best of luck.

Loracs said...

Yep, this is a whole bunch of scary shit on your plate. I hope someone can be there on Tuesday with you for handholding and general support. Is it an out patient procedure?

I am holding you in my thoughts, esp. on Tuesday, as you take yet another wild ride on life's merry-go-round. Yeah, it's definitely time for a tune change.

Rarity said...

Good luck Merujo!

At least you seem to be in capable hands! And you have lots of support around you - even if some of us are a bit far away... :o|

kristen said...

This just sucks. I'm so sorry that you're going through this. You are in my prayers. I wish you the best of luck with the procedure, and hope you'll be feeling better soon.