Thursday, June 6, 2013

JUNE 6, 2013

Work has been insanely busy (as has cycling training this spring), so my latest round has been neglected for sure.  Short version is 2 more surgeries and another round of Efudex on my neck this spring has me going from being pissed off to just being resigned.  This is a "forever" something and I'm just incorporating it into my life like haircuts.  Not really that casually, but I'm trying to be extremely accepting.

So, the longer version.

Since I work 7days/wk for a couple months each winter, my "normal" has been to have my derm checkup, usually late February and did that again.  They ask if there's anything in particular concerning me and, as usual....yes, these 2 particular spots for sure.  Both malignant.  Both requiring surgery.  Since the surgeries March 2012 took me a year to pay off, I begged my doctor to do them herself, which she reluctantly agreed to.  

#1 spot - Top of my forehead above my left eye.  Started as just a teeny dark spot that looked like I poked myself with a needle, but nothing on the outside of the skin.  Remained just a small dark spot, but it was definitely different!  Since I can wear bangs, I was fine with the scarring she predicted.  About 3 months later and I'm pleased with the results.

#2 spot - My left shoulder blade.  This one turned into a booger.  I'd already tried treating it on my own with Efudex a couple times.  Both times it would fester, even bleed during treatment, but never reallllly go away.  She said I could try 8weeks of Efudex treatment if I wanted to, but it's a pain in the butt, so I asked her to cut it out to.....especially since I'd already tried Efudex and I didn't want to deal with another surgery later.  Do it and get it over with. This one was quite a bit larger and so the scar's a little uglier.   But again, I'm 50 years old and live an active life, a shoulder scar is pretty acceptable right now.

#3 Efudex - Had a  small little pink spot show up on my jawline about the middle/end of this April.  Since I had a 765 mile bicycle event I'd been training for this spring, I chose to wait til it was completed and started treating it May 5.  I was SHOCKED!  The teeny little spot on my jawline turned into the entire right side of my neck.  Areas several inches away from the treatment were reacting!  But I also had a scuba + bicycle vacation planned end of May, so I chose to limit the treatment to the 20 days and will do my entire neck this fall.  

All in all, I'm tired of continuing to find these things, but I'm also glad to find them sooner than later.  Our insurance changed at work last year, so my cost was a LOT higher for the 2 in-office surgeries, which disappoints me, but my doctor is working with me to pay it out over the next 6 months or so, so at least I don't have to rob savings.

Still choosing to keep living at 100%  Just finished diving in Key Largo and Key West for a few days, then went to Boston to ride bikes for a few days.  I'm certainly diligent about sunscreen, but oooooooh, it's hard sometimes!!  I see these lovely, tan ladies and I wish I didn't......but I still think "brown fat's better than white fat!"  I told a black girlfriend of mine that and she just howled...and then agreed :)  The fake tan stuff comes right off the minute you're in the ocean for a while, so no point in that.  Ah well....trade-offs.

My encouragement to you continues to be WATCH YOURSELF!  Do not rely exclusively on your doctor.  They're human and they can screw up.  It is YOUR responsibility.  You know your body better than anyone.  Be diligent.  You don't have to freak out or be scared of everything, but you do have to keep both eyes open.  I truly believe the spot on my forehead would've been missed by anyone but me.  I knew it wasn't there one day, then it was there the next.  And it never went away.  

Hope my travels through this can motivate you to keep an eye on yourself.  Ain't nobody else going to! Be safe and have fun on the way :)  I'll add some pix shortly.

7 comments:

  1. Hi Betty,
    Hi Betty,

    ARGH!! Hate that you're having spots come back, that's the worst. But especially a spot where the Dr cut? That sounds like he didn't cut enough, which is always my fear.

    On the treatment, I say DO IT. In fact, I don't even ask....I see a spot, I treat! And I would MUCH rather treat than cut!!! I'm now another $1200 in debt to the doctor for the 2 in-office surgeries and that just makes me mad. So, yes, I'd much rather just do the treatment for cheap and fight the hassle. I'm just planning to do a round "wherever" each spring and each fall and do my best to avoid surgeries.

    Get to it girl. If you've got Efudex at home, like I do, I'd just get to treating. Sooner you start, the sooner you finish :)

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    1. I know and I hear you loud and clear! I hate going through the pain and really don't see how you can do it so much. I do have a tube of Efudex here at home and I will treat those spots as soon as it cools off. Always worse in the heat as you know. I have way too many scars and like you, I don't want to be cut on again. We both seem like fighters and I know its the same battle, so hang in there. Thanks for your support!
      Betty

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  2. Thank you for your informative website. My Doctor prescribed Efudex (spent differently in Australia) but with 1 application a day in the evening. I'm had 18 treatments and see the Doctor the day after I've completed day 21. No pain for me, but discomfort and a sense of sunburnt and tightness and dryness. I look very red and rather ugly, but so far I'm coping. I'm glad I could find blogs like yours with the hints and tips and see how people coped. It made a big difference. I was very scared at the beginning, but I'm dealing with it all. Some days I am fed up, but for the most part I know my face will thank me.

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    1. Sorry you're going through the same thing, but your face WILL thank you!! I'm 50 and even "I" don't think I look like it :) Tough way to get there, but I'd do it again in a heartbeat. For me, the last 3-4 days really escalated, so I hope you didn't have that same experience. The hardest part though is a few days AFTER when the old skin comes off and there's nothing underneath. I recommend having something ready before that happens!! For me the face needed steroid ointment, because it was so painful, but I just finished a patch on my neck and plain Aquaphor was enough for that. Like you, I was terrified and since I had to wait a few months, quite frankly, I was a basketcase and even had a complete breakdown at work, immediately after starting. I'd never felt so alone, thinking nobody cared and in retrospect, they just dind't know what to do, so I think everyone thought pretending it wasn't there was the right thing. I had to go to work every day and they had to see me looking like a monster, yet very rarely did even my friends at work say anything at all. So, you're NOT alone, but people truly don't know if they should ask or not. I chose to work a marathon during it and a little boy innocently asked "does your face hurt" and I was grateful! Somebody at least acknowledged I might be in pain!!!! I told him it does, but it would get better and he just looked at me and said, ok, I'm glad you'll get better. Then he probably said, will you pass the mustard or something like that, but I was just grateful to not be treated like I was invisible. Keep your spirits up as best you can and just realize you'll be down at times, but then it will be time to shake it off and get on with living. I choose to not die on the couch, so am getting ready for a 260mile bicycle ride tomorrow! I'll be slathered in sunscreen, but I refuse to let this completely change my life. Congratulations on doing something so good for yourself!!

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  3. Thank you for going to the trouble of reporting on this. I did Fluorouracil for 14 days and that last night was horrible. The doctor certainly didn't prepare me for this so blogs and YouTube has been very helpful. Lord, I'm glad I never sunbathed in the nude! Anyway, thanks again. John

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  4. Pam, Thank you so much. You have helped me more than you can know. Efudex was prescribed for me several years ago. Memories fail me, but I’m guessing I must have only used it on my chest, and most likely not for the full 2 weeks for which is was prescribed at the time. Other than being unsightly, it didn't bother me. Nothing had been explained ,and I hadn't grasped to seriousness of the situation.

    Where the dermatologists are concerned, my medical group is a disaster. My dermo kept getting injured and appointments were constantly getting postponed... The last time I got cut on, they lost the piece and I had to have it done over again to make sure the margins were clean. My shoulder blade has a giant scar that looks like a slug with long legs. She prescribed an antibiotic that put me in the ER with esophagitis.
    Due to my dermo’s absences, they finally brought in a newbie as a substitute... She was a pretty but very anorexic looking girl, pretty fresh out of med school. When I saw her she was an hour behind schedule and proceeded to tell me how overbooked she was. She looked like my chart overwhelmed her. She came over, started freezing spots, got exasperated and said, "You just have too much, I'm prescribing a cream for this. Use this on your face and chest." I asked her about my lower lip as the crusty skin returned after nitrogen use.

    She said use it on your lip.
    NO WARNING: to stay to the outer margin because it will spread to the inside.
    NO WARNING: Do not get it in the corners of your mouth.
    NO WARNING: Only use for 7-10 days on the lips...
    NO WARNING: How much it hurts, or what you’ll look like, or what might help such as steroid ointment...

    On day 11, I was like, ummm somethings not right here... Called the office, the nurse was rude, didn't offer info, and said they usually give out a fact sheet with the Rx. My starting date was Nov. 1, and they didn't want to see me again until Jan. 23! Concurrently I started digging for info and found your blog, along with bits of other good advice (in between holding an ice pack on my face). I am extremely grateful that people took the time to share their experiences!!! What a gift!
    It was comforting to know that someone with your tenacity and positive attitude even had a melt down, or even thought of it. (We are the same age.) Loved your story about the little boy at the marathon who asked you if your face hurt! I'm active but have slowed down a bit with arthritis and breast cancer.
    Thanks to your pictures, I realized I would be in complete agony on Thanksgiving when I have family coming from out of town. If the weather keeps up, and probably will, we want to take them jet skiing on the Pacific. I stopped the treatment and plan to start again in January, when hopefully we'll have a few cool days. Mid-Nov has still been 80's & 90's. (Southern California) Meanwhile my lips are a very painful mess. I treated them 2x a day for 11 days, and in my ignorance it seeped into the inner area of my lips, where several days after stopping it’s starting to bleed some and is excruciatingly painful. Ow. So glad that I already happen to have a steriod ointment here, as well as a numbing cream, and Aquaphor.
    As you said, “Forewarned is forarmed.” Hugs to you, Happy Thanksgiving, and thank you for saving mine!

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    1. OMG, what a horrible experience and I am so sorry for all that! Usually, I try to be fairly tolerant of doctors (they're people too), but your office DOES sound like a disaster and I would immediately ask everyone you know for recommendations and I would switch! I "try" to be big on documentation in hopes it would help me or others, but that office sounds so bad that sharing documention would probably make them MORE dismissive!

      I had to laugh about the meltdowns because they were FREQUENT! My blog was intitially planned to encourage my 75yr old mother to do it, so I tried to paint the brave face and just stick to "the facts," but since nobody can predict your reaction to the cream, how do you prepare yourself and others? I chose not to say anything to anyone but a couple people at the office because I didn't want to be "the girl who cried wolf," so by the time I turned into the monster, my brain was fried and my co-workers too, so nobody said anything!!! Added a thousand pounds of weight to my already fried brain, which I wish I could've handled differently. Still glad I did it and would do it again.

      So glad you took some charge of your own destiny and started researching when you realized "something's not right here." Too many people think doctors know everything, but they DON'T. It's your body and going through needless misery is crazy and sad. So grateful you are looking around and I encourage you to keep at it. I have a spot on my chest and thigh I need to start...haha...but not til after my IPL photofacial tomorrow :)

      Glad the blog is still out there and being useful. Must admit, efudex is such a common thing for me to use "as needed," I stopped blogging each part because it seemed to trivialize it, but knowing others are still getting some help, maybe you'll inspire me to freshen it up a bit. Thank you for sharing and I hope the next round, you find doctors that may not know more about efudex, but maybe they'll know more about treating patients!! Hugs back to you and hope your Thanksgiving is fantastic :))
      Pam

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