Tuesday, April 16, 2013

Chapter 5 - Round 2


After you have had melanoma you get put into the wait and watch mode of health care.  Depending on how "bad" your melanoma was, it can either be every 6 months or every 3 months.  I was in the 6 month category. The routine is as follows:  Go into the little room, take everything but your undergarments off and put on your fashionable blue hospital smock, with full ventilation out the back end.  My derm keeps the room at a very warm temperature, which is a thoughtful touch. He's a little bespectacled man from Ireland, with striped shirts and bowties. His appearance made me like him instantly, even though his manner is abrupt and he doesn't talk anymore than he has to. I felt confident in his opinion.

He did a more thorough check of my skin than any other derm I have had before.  He inspected my spots with his magnifying glass and special light. Wrote on a little human shaped diagram the location and size of some of my more dysplastic moles.  I have a lot of them! He ran his hand along the scar on my back, looking for lumps under the skin.  It can return, hidden in the scar tissue, he told me. Every visit he queries whether I am wearing my wide brimmed hats and sunscreen. Are you taking Vitamin D?  Is there any moles you are concerned about?

Yes, there is, there is one.  I had noticed a new mole on my arm.  It was med sized, round, light brown and raised.  It didn't look very harmful, but I thought I should point it out, since that is what I am supposed to do.  I felt kinda silly showing him such a benign looking little thing, but I did.  The derm's quick dismissal confirmed my feeling of foolishness.  In my head I knew that raised moles were nothing to worry about. His confident rejection confirmed my thoughts. 

6 months later, it had grown some more, started gaining a few new colors.  So at my next melanoma screening I pointed it out yet again.  He took a look with his special light and magnifier, measured it with his handy dandy circle measuring thingy and declared that it hadn't grown and was still only 5 mm wide.  "Oh it has definitely grown!" I said.  It just hasn't grown side to side is all. Again, his firm rejection comforted me.  As I left, I asked, "if I wanted it off anyway, what would I do?"  "Ask your family Doctor to do it, just make sure it gets biopsied."  Ok.  I was just disliking this little growth on my arm.  Not the prettiest thing you ever saw. I might just do that!

I thought about getting it off. But you know how life gets away from you.  And six months goes by entirely faster than you think it will.  The little brown bump has now grown to a size that my husband has started calling it my third nipple.  ( hope that doesn't offend anyone!)  I was determined that this time, whether the derm said so or not, I was getting this hideous growth off my body.  But his interest in my growing lump had grown as well.  He spent quite a long time looking at it with his magnifier and light. Mumbling about not liking the color of parts of it.  He got the other Doctor to take a look as well. 

Finally! It has been declared for removal!!! I have never been so joyful walking into a doctors office to get a piece of my skin removed.  Not a bit of anxiety this time.  I was chatty and happy.  There were two student Doctors there to watch.  The derm explained to them facts about melanoma and how much further ahead they are in Australia. As I listened to him, I was actually enjoying myself, and feeling even more assured of the vast knowledge my derm had in the area of melanoma.  I smiled as I walked out the door, with 5 stitches in my arm.  I almost glowed. 

After that I didn't really give it much thought.  Until a couple of weeks later.  That's when I got a call from the derm himself.  It is amazing how many thoughts can cross thru your brain in a short 1 minute conversation.  First of all, you instinctively know it isn't good news when the derm himself is on the phone, instead of the secretary.  So you know its cancer.  But quickly followed by that realization, comes the sureness that we must have caught it early.  Especially since I have been under the close care of an excellent derm. I remember being quite proud of myself for even thinking to ask what stage it was.  Was it "in situ", or maybe stage 1?  But then he said something I wasn't prepared for.  He said, "we won't know till we've tested your lymph glands."  Woah!  The word "lymph" echoed around inside my head.  I don't quite remember how the conversation ended. My mind went a little foggy after that.

After my first diagnosis with melanoma I had done a quick internet scan, to see what was out there.  I did run across the whole radioactive dye lymph thing somewhere, but I brushed that off as something that happens to other people.  People who didn't know about melanoma, and what to look for.  Because surely I would catch any melanoma loooooonnnng before it got that far. Especially since I was seeing a good derm every 6 months!!!!! But my faith in my knowledge was seriously flawed.  I had never heard of nodular melanoma.  The kind that grew fast, down, and was often round and raised. My research didn't take me that far. There was a gap. A gap that I fell into. A gap that apparently even my derm fell into.

The next two months were dreadful.  It was in those 2 months that I lost 3 friends to cancer. It was in those 2 months that I got to play the waiting game.  Mike described it as the feeling you have just as you are about to crest the top of that first hill on a roller coaster,  you hold your breath, just as it crests...........accept that you are just stuck there, ...................waiting............... and waiting.............. waiting to know if this ride is going to get worse or better from here on in. It's a ride that too many of my melanomates are familiar with.



Back to visit my friendly neighborhood plastic surgeon, Dr. D.  If I thought his words scared me last time, this time they made me nauseous. There was a longer conversation about the possibility of needing a skin graft. Then there was the discussion about my odds.  This is where I got the most honesty from a Doctor.  He didn't try to placate me with a statistic.  He said he could tell me I have an 80% chance of surviving 5 years. But that isn't always true.  Sometimes he tells people they will be fine and they aren't.  Sometimes he tells them to arrange their affairs, but they continue to live.  There are no guarantees with this beast. It is unpredictable.  He told me that the Doctors still don't understand melanoma very well.

Thank you for your honesty Dr. D, for telling me like it is, instead of saying it will all be ok.  Thank you for making me realize the uncertainty that I face, so that I Can face it. Instead of maybe being walloped with it later and being less prepared. Thank you for letting me be proactive, to change things I can, and do it now, so that if things go the wrong way round, I will go down knowing I did my best from here on in. The alarm bell has sounded.

The last day of school I had my surgery. As the kids had fun day and games, I wallowed in anxiety.  Thankfully my surgery was later in the day, I'm not good at mornings. Still, I arrived at 9:30 to get all the testing done before the surgery.   The volunteer lady explained all the places I should visit and the best order to visit them in.  A chest xray, a blood sample, a visit to the nuclear radiology department. NUCLEAR radiology?  Yep.  This is where they inject radioactive dye into your arm around the site where the mole used to be, and then watch to see where it goes.  Thing is, I thought they did this while you were under, not fully awake!  I think every doctor I saw figured the other doctor had explained this or that, when in fact no one really explained much of anything.

Nuclear radiology, doesn't sound like the most popular place. It sounds downright daunting. But I went in with hopes that this would be quick and easy. Otherwise the Doctors would have warned me right?  The nurse put a patch on my arm to numb the area where they would inject the purple colored radioactive dye. Then its into the room with the big scarey machine. They have a warm, I mean, a really cold metal table for you to lay on.  And its a lumpy narrow table at that.  I think when they designed it, they must have forgotten there was going to be a human inside. Then the nice Doctor says he is going to inject the dye. It will hurt.  Ok, brace for it..... Yowzas!! Hurt is a bit of an understatement. I just about jerked off the table. I don't think the little patch thing worked so good nurse lady. Ok , step 1 done, on to step 2. 

The machine tech lady moves the "comfy" table closer to the machine.  I look up at the large square above me.  This should be ok.  Then she says it will take about an hour for the machine to track the dye as it works its way to my lymph glands. Ok, still ok.  But then, she tells me she is going to move the machine down closer.  As it moves closer and closer and closer, the words "an hour" becomes extremely long in my head, I start to panic.  If the tech lady saw the flash of terror in my eyes, she chose to ignore it. What to do, how do you not panic for an hour stuck in a metal machine?  Music!! Sing a song in my head!  La la la la la. Yeah, that's not gonna work, I can't think of the lyrics of songs when I'm Not sandwiched in a radioactive tracking metal contraption.  What else, what else, before I totally lose it.... come on..... think.....think.....got it!  My dream house.  I can feel the anxiety start to lift just thinking those words. I can continue my dream plan.

I took structural drafting in college and in my mind I have been building my dream house for years, my Paradise home.  Now where did I leave off, ..... aw, yes, the stairs.  If I put in one of those hidden "servant" staircases that makes a shortcut stairway to the kitchen, then the stairs would have to be on the other side of the hallway, hmmm....... I take a peek at the machine as she lowers it even closer.  Holy Frog King! its like an inch and a half from my face!!!! ........ stairs, stairs, ok stairs, if the stairs were on the other side then the playroom off the kitchen would be slightly different, and how would I get the window seat in the stair landing?.............and this is how I made it through the hour in my metal coffin ride.  

All in all the surgery went well. The Doctors were both nice and comforting.  It took the anaesthesia guy three attempts at the IV though.  I guess I have wiggly veins that collapse. Hurray for me! And after taking a second look and pinching my arm skin, Dr. D declared that he shouldn't have to do a skin graft.  Its the only time I was glad I didn't have skinny arms. He drew strange crooked lines on my arm with a purple marker.  Not sure how that's gonna pan out, but your the plastic surgeon! And I've seen the amazing results of what they can do on peoples faces. I do trust both these guys. The lymph surgeon and the plastic surgeon are both young enough, hip enough, and competitive enough, to want to do their best. About 5 hours later, pale, weak and slightly nauseous they sent me to the car in a wheel chair. Done Step 3. Now for the waiting.

It takes about 3 weeks for the lymph test to come back. That's practically a month with your life in the balance. If its positive in more than 3 nodes, I am stage 3. That means more surgery, chemo, and my odds of survival wavering. If its negative, I am stage 2, 80% survival in 5 years. So the outcome is important. And waiting is hard.  You try to pretend its not bothering you, not consuming you, carrying on the best you can, (with one arm,) doing everyday things.  But life is just not everyday. And the scar that was left behind is quite knee weakening at first sight.

Me and Mike made the mistake of changing the bandage for the first time, just before a meeting. The look on Mike's face was enough to know it wasn't good.  He turned a shade of green. When I looked in the mirror, my first thought was, "THIS is plastic surgery?!" It looked like a butcher had been at it. And the shape was so odd, like Zorro had left his mark on me.  I couldn't believe how terrible it looked. But I sucked it up.  We redressed it and went to the meeting anyway. Where else would I want to be? At home isolating myself, left alone with my thoughts?  No. Distraction is just what I needed.  To be with those that care about me.

Again, in sadness, I found beauty.  The beauty of an understanding look and a squeeze of the hand. Shared tears without words.  Such comfort. One sister came up, a sister I knew was having troubles of her own.  I told her about the "mistake" of looking at my arm. She just took my hand and said "Its gonna be ok, its gonna be ok" and cried next to me for a moment. Then she left.  But in that moment it gave me release from that feeling, allowed me to carry on, and go forward.  Beauty in sadness. Its always there when you put yourself in the right place.

Three weeks finally came.  The moment of truth.  In a few moments from now are we going to be sighing a huge relief or holding our breathe yet again?  The nurse must have been used to these kinds of situations.  She poked her head in the room, while we waited for the doctor and said.  "It was all clear!  The lymph nodes were clear!"  How lightening those words were.  Such weight gone. I don't know what the weather was like outside, but it felt like a clear summer day in that office with no windows.  I could hear birds singing in my head.  Such relief. Round 2 is over. Finally over. 






Sorry! but I have to post this. 

This is melanoma, 

this is what it does. 


Is it "just" skin cancer?



This was about a week after surgery.



It actually looks a lot better here than the first time we saw it. 

3 comments:

  1. Just so everyone knows, according to everyone in the medical profession who saw the scar, they all have nothing but glowing words on the wonderful job the plastic surgeon did, including his own report on the surgery. Its just that to the layman, when its your own arm, you see it through different eyes. I will explain to you one day the amazing part of the surgery, but we will save that for another time.

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  2. Thank you for sharing your story! Congratulations on the great news about your lymph nodes!

    I had a very small Stage 1 melanoma removed from my forearm and that resulted in a 3 inch long scar. It looks like a small shark took a bite out of my arm. I remember the first time that I saw it after the surgery - I almost fainted! I thought that the surgeon did a terrible job, until I realized that sometimes they have to get "creative" when they are stitching everything back together. Wear your scars with pride and use them to educate others about the reality of melanoma and sun safety! Best of luck to you!

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    1. Thank you for your words of encouragement. I am getting braver with my scars!

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