6.21.2017

National Selfie Day

It’s National Selfie Day, and as someone who does social media for a living (but isn’t exactly the queen of selfies), I had a good long think on the number of reasons I would not be posting a selfie today - and the winner, winner chicken dinner was clearly the current state of my unedited face. 

Put away your Kim Kardashian beauty editing app, because it ain’t gonna help this hot mess.

I am now 3 weeks into the throws of a chemo-rash that far surpasses anything I dared complain about at the start of this regime 6 months ago. There is no logical medical explanation for why it has returned, and returned with such a vengeance. It currently looks like chicken pox mated with a swarm of Amazon-bred mosquitos and gave birth on my face.

I just want to hide.

The general idea behind EGFR-inhibitor chemo is that you get a rash (and cracked bloody feet, nail infections, nails that have to be removed because of those infections, infected eyelids, cracked skin that has to be slathered in heavy cream twice a day, facial hair, and scabs on the inside of your nose that bleed if you even remotely try to pick them) and getting a rash is apparently a good thing. The worse the rash, the better the chemo is working. This theory proved correct with my first 2 scans.

First 3 months = bad rash = significant shrinkage
Second 3 months = hardly any rash = no shrinkage

Pending insurance approval for an earlier-than-needed scan, I will have to wait another 7 weeks to find out if this magical plethora of welts upon my face (and infected eyelids) is indeed the neon sign that the rash-inducing chemo has decided to get back to "significantly shrinking" after the half time show break.

Third 3 months = gawdawful rash = yet to be determined

So to force myself out of hiding on a day when everyone is putting their prettiest face forward, I'm closing the beauty editing app and putting this out there for all to see. Sometimes airing our dirty little secrets releases the hold they have over us. So for me, I'm going to air out my nasty little face and release the hold it has over me. 


Happy National Selfie Day. Here's mine.
Full sunlight with nothing but Aquaphor (and a nice coating of steroid cream to take the redness down) to hide behind. Too bad this isn't 3-D so you could really see the dimension and texture of the my welts. #nofilter

6.02.2017

Mid-Thigh High

Remember when I had needles jammed between my toes back in February? The results have long been in, I met with my doctor, things are better than most, probably what I expected, and overall I'm content.

1. I do have lymphedema. 
Shocking to no one.

2. It looks like a bulk of the stagnant lymphatic fluid is in my lower leg.
I knew this just based on appearance and my ability to get away with wearing only a compression sock to the gym. Sure, all day and it starts to really back up around my knee, but I can see the line of my quad muscle in that leg if I stand up, which is not something I can say about my calf. The good thing about this is my doctor gave her blessing to have a custom garment made that stops just above my knee. I think it was a first for her, and a first for the lady who measured me for said garment.

Said garment arrived, much to everyone's surprise it stays up, and I now feel slightly freer in my workouts without having silicone grips stuck right up under my ass. It's a little tighter than I would like, but with a little extreme stretching, I can hopefully stop walking around with a muffin top above my garment.

3. I have amazing lymphatic flow in my right leg. 
She said this wasn't always the norm for someone with lymphedema in one leg. It means nothing to me, but I'll take it.

4. I am a candidate for surgery. 
Am I? Technically. Does she advise it? No.

And it's not that she said I can't, she just said given how "not bad" my leg is, she doesn't think it would be worth the stress, money, time, and pain for results that may not be guaranteed. Most people looking into the surgery hope to end up with a leg that looks like mine. I'm looking into the surgery because I want a leg that returns to normal. Possible? Yes. But worth the gamble? Who knows.

Because the surgery is not covered by insurance, I would have to put down a little deposit for the surgeon to fight and appeal my insurance company. From others who have gone before me, I know this could be anywhere from $10,000 to $35,000. And guess what happens if all those appeals get rejected? There are no refunds.

Throw in the $800+ I'd have to pay just for a consultation, plus the travel, aaaaaaand I can see my doctor's point. That's a lot of risk with the potential for no reward.

So for now I'll be content on not pursuing the surgery, but knowing full well that in a couple of years it may be covered by insurance without the fight, and it may be perfected to the point that I will get perfection. In the mean time, I'll continue obsessively caring for it so that it stays as normal as possible, and appreciating my skinny jeans that fit.

All the darkness is the painfully injected contrast working its way through my lymphatic system at 1 hour intervals. One calf is clearly not like the other.