Showing posts with label adventures with melanoma. Show all posts
Showing posts with label adventures with melanoma. Show all posts

Wednesday, June 05, 2013

The word from Mama Eddie!



Take it from your melanoma surviving junk-blogger here:  Do what the hunky guy in the pic is doing and put on LOTS of sunscreen when you go out this summer.

I'm especially looking at you, fellow junkers.  We get in and out of the car so much on a typical Saturday run that we don't realize how much sun exposure we get standing in front yards that don't have any tree cover. 

A big, floppy hat is also advisable.

Here are some links to sunscreen info that also include links to more info about skin protection and skin cancer prevention:

FDA
Consumer Reports
American Academy of Dermatology

I'll have a relationship with a dermatologist for the rest of my life.  You don't have to.  Protect yourself.

Friday, December 07, 2012

Secret Origins

Continuing the story of Nigel and Sixtus.

I've always had lots of moles.  My mom's side of the family is pretty moley.  Most of mine are just flat spots of color, but I do have a couple of not-so-attractive protruding ones.  Thankfully, those are all on my back.  I'm the only one that ever has to deal with them.

The mole that turned into Nigel was one of those flat spots of color on my neck.  He was small, light brown, and fairly unobtrusive before he went wild.  A couple of years ago, I rubbed my neck while I was sitting around watching TV and noticed some bumps on the surface of my skin that had never been there before.  When I looked in the mirror, I saw they were forming on top of this mole, which had grown larger and darker.

I knew about the darker and larger part, but the bumpy was something new to me.  People had been asking me about that "dark spot" for a while, but I passed it off as nothing.  Somehow, I convinced myself that it always looked that way and was therefore okay.  It wasn't until after I noticed the bumpiness that I looked at a picture from 2006 and realized that it didn't look the same.  That it used to be small and brown, not big and dark.

I started checking it every few days to see if it was getting bumpier and that was how I discovered Sixtus.  My hand strayed off the mole and I felt a small, hard lump under my skin.  I thought it might be just a swollen gland, but I couldn't find anything corresponding to it on the other side of my neck.  That's when I first realized that I had a problem.

This was a couple of months after Mom died, so the cancer idea was pretty strong in my mind.  I'm educated and aware enough to know that all the signs are not healthy and point to something serious.  The problem was that I had just lost my job and had no insurance.  It may have been a dumb thing to do, but I decided the best course of action for the moment was to keep quiet and keep an eye on things.

I wasn't going to let it go forever.  If it had gotten noticeably worse, I would have done something.  As things stood at that moment, though, I felt discretion was the better part of valor.  I was still sorting out my employment options, for one thing.  I didn't want to take any action that would cause this to get labelled as a "pre-existing condition" and not covered by any future insurace policies.

Keith was another concern.  I knew how much he would worry about it and I was afraid he would try to make some heroic gesture that we really couldn't afford at that moment.  I knew it was very risky, but keeping quiet seemed like the best option at that time.

Time passed.  I started getting some decent part-time work.  The booths started doing well.  I was in a place that really made me happy.  I just had no benefits.  Nigel didn't really grow that much, although the mole got splotchy and ugly.  Sixtus just acted plain weird.  Sometimes the lump seemed bigger.  Sometimes, it seemed smaller.  It was really hard at times and not so hard at others.  It was not like anything I had ever heard of.

This past summer, I was able to get insurance coverage through Keith's employer, who added domestic partner benefits.  I figured I still needed to wait a few months, to get out of "pre-existing" land.  I also picked up a gig with really steady hours and some regularity descended upon my schedule.  It looked like things were going to work out and then something threw a spanner in the works.

In September, my neck swelled on that side and turned red.  It was warm to the touch and very tender.  That was a scary moment and I finally told Keith the whole thing.  He freaked out on me, got justifiably mad at me, and insisted I get medical attention immediately.  I wanted to hold out until January, just to be safe with the insurance.  I also wanted a few months to bank some co-pays, because I knew there would be more than one doc involved.

He would not go for it, so I struck a Faustian bargain with him.  I would talk to our doctor about it, if he would make an appointment to get some things seen to that he had been putting off.  I am not above a little emotional blackmail.  Of course, right after I did this, the swelling, redness, and pain all went away and have never come back.

Due to my schedule, I couldn't see my doctor for afew weeks.  After that things happened pretty quickly--referrals, ENT doc, dermatologist, biopsies, scans, more biopsies, consultations, and now a scheduled surgery.  After Sixtus comes out, he's going to be biopsied again, and the results of that biopsy, plus what they find when they open my neck up, will determine if I need any other cancer treatment.  I'm thinking the surgery will be the end of it, since the scans didn't show that anything had spread.  I could be wrong, but I feel like I'm almost out of the woods.  I guess we'll see.

The biggest hassle for me right now are the little annoying things.  Nigel bleeds a lot, sometimes at really awkward moments.  That has been worse since the biopsy.  Monday night, I ended up in the ER because of it.  It was a totally unnecessary visit, but Keith was insistent.  I'm also getting really tired of doctors. 

More than once, I've gotten really pissed off by one who either schedules something for me without consulting me, talks to me like I'm an idiot for insisting that everything work around my work schedule, or really seems more interested in getting his cut of the insurance pie.  Through this whole process, there have only been two doctors that have taken my concerns into consideration and let me make the decisions.  One of them is our primary care doc, who is wonderful.  The other, thankfully, is the surgeon who will be performing the procedure.

By the way, the name Nigel comes from the ENT doctor, who biopsied that spot.  He kept referring to the "nodule" on my neck, except that it sounded more like "nojul" when he said it. It was a short jump from that to Nigel for me.  Sixtus comes from the radiology folks who did the scan and biopsy on the lump.  They kept thinking it looked more like a cyst on the ultrasound.  My odd brain turned that into "Sixtus" and they both had names.

Wednesday, December 05, 2012

The Adventures of Nigel and Sixtus

I've picked up two new friends in recent days, so I thought it was about time to introduce them.  They've been hanging around a lot and are having quite a bit of impact on my day to day life.  Let's start with a photo, shall we?



That multi-colored blotchy thing is called Nigel.  I'm not sure if you can make him out or not, but next to him is a kind of lumpy spot.  His name is Sixtus.  They live on the right side of my neck.  Well, Nigel lives on my neck.  Sixtus is more like inside my neck.  The consensus is that he's made himself comfy on my right parotid gland.  He might be related to Nigel, but we aren't sure about that.  Nigel, you see, is a malignant melanoma.  The red spot is because he bleeds from time to time.  Sometimes a little.  Sometimes a lot.

Yes.  I have cancer.  Even as I type this, feel like a bit of a fraud saying that, like I'm going for the dramatic or something.  I know cancer.  I've seen cancer.  My mother died of cancer.  I was there.  Keith's brother died of cancer.  This is cancer.  Me?  I've got an annoying spot on my neck that bleeds sometimes. 

I'm not saying this out of false modesty or denial or anything else.  I know what melanoma is and what it can do, but I feel like just about everyone that knows about it wants to shove me in some kind of a convenient box that I really don't want to be in right now.  I think there are other people hurting and tired and sick and worried from this disease or other medical situations, and they are the ones that need attention and concern.  Not me.  They're the ones who need it and deserve it.  I'm just trying to live my life and deal with this thing until it comes off.  It's an annoyance and an inconvenience to me, but nothing near the level other people are dealing with.

The coming off of Nigel and the coming out of Sixtus (always knew he was gay) is scheduled for December 31.  Happy New Year to me.  We won't know for sure how much stuff will be removed with Sixtus until they get in there.  The whole parotid may have to come out.  Lord, I hope not.  I'm also not sure how they are going to replace the skin they remove with Nigel.  I fear having bits of my buttocks attached to my neck.  Around the house, I'm already referring to myself as a "buttneck."

They've been on the scene a while now, but I have held off on writing about them until now, because I really didn't feel like drawing attention to something that is going to be gone soon.  However, they have been really asserting themselves into my life more and more lately and it's getting on my nerves.  I needed to start getting this off my chest (and neck).  There's more to their story, but I've said enough for right now.  I'll continue later.