Wednesday, June 18, 2014

Melanoma, the Sun, and Me


(A post on how to roast beets to follow because yes, I have been that red before.)
There's really no way to make this long story short.  I am a strawberry blond, with fair skin, blue eyes and Irish ancestry.  I have had more sunburns than I can count, especially as a teenager.  (I was actually grounded for it one summer.)  I did go to a tanning bed for one month before my wedding.  Those are pretty much all of the risk factors for skin cancer.  If you lined up ten people and asked who is the one diagnosed with Stage 3b melanoma, I would be your obvious choice.
And you'd be correct.
I have really had a hard time getting this post done.  May was actually Melanoma Awareness Month and I started writing about it then.   I logged in to finish up and look for some pictures.  The words didn't come, but all of the emotions did.  I think the photos did it.  Being a real trooper,  I went shopping.  Like four times.  I even mostly caught up on the ironing and that is really something I do when I am in avoidance mode. 

Now it's the middle of June and Hubs and I are enjoying some time on Hilton Head Island in our home state of South Carolina.  My thoughts had been going back to actually publishing this post and getting back to my long neglected Paleo blog writing when Hayley Mason Staley, half of the awesome young couple who make up team Primal Palate,  posted this article about how toxic some of the more popular sunscreens are and how we actually need the sun. Well, I have a lot to say about that and by 'say' I mean in this post, right here.  It's pretty wordy and rant-like.  And it has the skin graft picture that probably freaked me out of finishing because it is super oogie.  At any rate, here is my experience with melanoma and a few choice thoughts on the medical stuff that went along with it. 
Let's face it.  Melanoma is one scary, bad cancer.  I was misdiagnosed three times, had lymph nodes dug out of my arm pit, skin grafted from my butt onto my hand, had the tumor lost somewhere between the operating room and the pathology lab, told not to worry, had a lump judged to be a ganglion cyst, had a lump determined to be recurrent metastatic melanoma, I've been scanned which included being pumped full of radioactive tracers, biopsied, punched with needles in my neck, and diagnosed with basal and squamous cell carcinomas to boot.  In addition to that I've seen five oncologists, one of whom was a pretty ornery guy who I really wish I'd never met.
 I messaged an online friend for some statistics. She was and has always been there for me and reminded me that what matters isn't a number, which is what I've had such a hard time understanding. There are so many support groups out there, and the Melanoma Patients Information Page  is certainly one of the best.  Problem and truth is that many of the kind people who helped me out almost ten years ago when I had my primary diagnosis have died.  Yes, people you have never met in person can grow to be your friends and losing them to this crappy cancer is all kinds of tough.  I have no idea how I got so lucky because the key to surviving is early diagnosis and my tumor was only removed because I kept pestering the docs.  Sometimes I feel pretty guilty for being alive and well, which probably makes no sense. 

I had a mole on my left hand, between the webbing between my ring and middle fingers for as long as I could remember.  It looked like this: 
It itched and peeled off and was gone for a while.  It came back and just looked funny, so I got a referral to a dermatologist who told me that melanoma is usually diagnosed on the torso or legs and not to worry about it.  Besides, if he removed it, I would have a scar.  I told him that I really didn't think the ugly brown mole looked that great either, but he told me to stay out of the sun and sent me on my way.  With this thing on my hand:     
Nice.  So I bugged a couple more docs and one actually froze it with liquid nitrogen which only seemed to make the mole angry and it actually turned a nasty shade of purple.  A primary care doctor that I visited for a backache finally did the biopsy and we learned that it was melanoma.  Four days later I walked into Blumenthal Cancer Center in Charlotte, North Carolina pretty terrified.  Melanoma can, indeed, be anywhere on your body sun exposed or not. I needed a wide local excision to remove the area around where the mole had been.  I also needed to have some lymph nodes removed to see if the tumor had spread.  I learned that my tumor was in a pretty bad area because of the risk of losing hand function.  I also learned that I could possibly have to have both fingers associated with it amputated.  That didn't happen, thank goodness,  because the plastic surgeon was able to  graft some skin over the area.   The whole experience was decidedly not fun and started me on a road to a deep wariness of the medical profession in general.  The tissue was lost so no one was able to say if they got all of the cancer  the first time.  On the bright side, the lymph nodes were negative.  I was seriously glad that they made it to the pathology lab.  It does seem that both the tissue and the nodes would have gone together, on the same tray or whatever, but that's just my way of thinking.  I also had a big wonkin' place to heal where the mole had been. 
Once again, I was told to stay out of the sun.  Stage 1b melanoma was a pretty good stage to be if you have to have melanoma.  I was also to visit the oncologist every six months for two years and a dermatologist every six months for the rest of my life. 
About fifteen months later, we had moved to Birmingham, Alabama and a lump popped up in the incision line of the skin graft.  My new oncologist, the ornery one, said it was just a cyst and it did disappear When a second lump appeared one morning about an inch and a half away the skin graft, I sought out a different oncologist.  He thought the lump should be removed.  Bingo.  Stage 3b, recurrent metastatic melanoma with a very real chance that it had spread to distant organs.  I needed a PET/CT scan to determine this and more surgery on my hand.  Thankfully, and to every one's surprise, no trace of tumor was found.  But the staging and statistics followed me around in my head and I was a stressed out mess for the next couple years as I went for every scan, chest x-ray, blood test and doctor appointment I was supposed keep.  It was like waiting for another shoe to drop and breathing a sigh of relief until the next appointment.  I had so many biopsies that I bought a pair of little scissors to be able to remove my own stitches.
The testing and stress of it all is what brings me to what this all has to do with living a Paleo Lifestyle.  I know a lot of things about melanoma that I wish I didn't; knowledge is power, but knowledge can also mean worry.  I spent too much time worrying and probably strained some relationships because I was obsessed with stuff like how likely I was to go to stage 4 and have brain tumors popping out my eyeballs. I rarely got out in the sun.  When I did, I loaded my skin with powerful sunscreens.  I went for test after test and was exposed to lots of nasty see when you have a PET/CT scan, you get an IV full of a radiopharmaceutical called FDG something or other and the techs shoot your through this donut-shaped thing head-first.  Then feet-first, just for good measure.  Before you leave, you are sent to a restroom with the Nuclear Fallout Symbol on the door and told not to hug or hold any babies or small children for a day or so. 
Now I've had five of those scans.  I don't really care if the half-life of FDG something or other is super-short.  It's still a scary radioactive thing.  There were a few things that showed up and led to other tests that never turned up anything except more panic. 
Something dawned on me one day when I saw a new dermatologist at Moffitt Cancer Center in Tampa.  He said that there were plenty of people out there with a lot more sun damage than I have who will never have melanoma.  His take was that sun exposure and skin type isn't the biggest risk factor; it's more genetics and exposure to chemical and environmental crap. 
Now doesn't that just fit into a Paleo philosophy?  I hear more and more people say that their blood work shows them deficient in Vitamin D.  We spray and rub high SPF sunscreen blocking out a
vital nutrient while slathering our skin with chemicals.  And for someone like me, with my medical history, I am a sitting duck for tons of testing that can expose me to Heaven knows what, especially since I have good health insurance. Yep, a bad statistic with good health insurance.  I'm convinced that's what some docs have seen in me. 
Over the last few years, I've taken a different approach.  I was advised to have scans every six months for two years for a total of four and then chest x-rays every six months after that.  The folks at Moffitt wanted me to have the fifth one and I did.  Then I decided to take a break.  I needed to take some time off from it all and have not seen a doctor in over five years.  I could make up a  bunch of excuses, like I've found everything that was every anything malignant on my skin all by myself and pointed it out, which is true, but it is still just an excuse.  I am not sure that was the best decision, but it was what I needed to do.  It has probably been so long that the dermatologist I want to see (at a friend's recommendation) will yell at me.  And do some biopsies.  And yes, I do plan to go this summer or at least later this year.  No particular reason, not worried about anything on my skin, just probably need a check.  But I am skipping the chest x-ray, if it is recommended,  unless there is a really convincing argument to have one done.  There's too much radiation flying around as it is.

Now about the sun.  I stayed out of it for years.  But that cuts out lots of fun things to do.  I found a great sunscreen and started enjoying seeing the light of day again, but now this worries me too.  It is a broad spectrum, highly effective, waterproof, and approved by all sorts of skin cancer organizations.   I left a can of it in my cosmetics bag once and I guess somehow it leaked.  It ate the paint off of my tweezers and melted the plastic handles on my make-up brushes.   Maybe I don't want to use it on my skin after all.  So my general plan is to soak up the free Vitamin D for fifteen or so minutes on each side and then hide under a tree, umbrella or some kind of UV-protective clothing.  It works well most of the time.  I managed to spend a week on a sailboat in the Grenadines back in March and did not even have a tan line when I got home.  But then a few days later, (in the picture at the top of this page) I  spent a little too much time yacking by our neighborhood pool and managed to get a lot too red.  So I screwed up.  Hopefully, the things I've read lately are true.  We need some good sunshine within reason and the effects of too much sun are cumulative.  One sunburn will not set forth a malicious melanoma attack.  The die is pretty much already cast through a whole slew of factors so I  just need to keep a good check for weird stuff and lumps. 

And I know, I know...get a skin check.  I hope you will too.

Take good care, k.

1 comment:

  1. Now that you're aware of what you're up against, the fight to thrive over your illness has a better chance of success. I'm sorry you had to experience being misdiagnosed. It must've been so traumatizing and difficult for you. In any case, you are a very strong woman, and it doesn't take much to know that. I know you'll overcome that obstacle, Kim. Thanks for sharing your story with us! All the best to you! :)

    Sabrina Craig @ Medical Attorney NY