Wednesday, April 17, 2013
Tuesday, April 16, 2013
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
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
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
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 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
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 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.
Tuesday, April 2, 2013
For awhile there, I think people were beginning to think our Hall was contaminated somehow. Is Cancer contagious? Was it in the water, the seats, or heaven for bid, airborne! It sure seemed like it round here!
Not long after my first small round with cancer, we got the news that a good friend was diagnosed with colon cancer that spread to his liver. It didn't sound good. They didn't widely advertise the extent of his cancer, but it didn't sound especially promising. Richard has a family with 2 kids. It's always harder when there are kids involved, the loss would be so much deeper if it went the wrong way round. But through it all, their family was a stellar example, always helping others, rarely missing a meeting. It just shows that sometimes, just by your presence, by carrying on, you can encourage others. I applaud them wholeheartedly.
Next came dear Johnny. When we first moved here and we met Johnny, I said to Mike, "It is going to be a sad sad day when that man goes." He had already won my heart. Shy and gentle, so kind, he always took the time to say hello and ask, in all sincerity, "how are you?" He didn't say much, but what he did say, was genuine. Asbestos was his enemy.
I guess since it looked like so much fun, we got a whole crop of joiners. Within 3 months of Johnny's diagnosis, we added 3 more to the growing ranks. Jim was the next inductee. Jolly, smiling, greeter Jim. I was constantly amazed at how a man with such big hands could create such beautiful fine woodwork. He swapped painting for doing our cupboards. Almost exactly one year ago, he told me how he was going to the doctor to see about a pain. He figured it was his gallbladder. Or at least that's what he was telling people anyway.
. I sigh deeply as I write her name, a mist in my
eyes and a lump in my throat. What a truly sweet and caring woman. She was a Gramma to everyone. With what
little she had, she was always trying to share it with you. Full of life, humble as can be. She was
family to us. Family by choice. For a year she was trying to figure out why she
felt sick all the time. Finally she found out, lung cancer. "But only
stage 1!" she said with optimism.
She was more worried about me. Cuz you know, I couldn't stay out of this
The empathetic person that I am, I couldn't have all these people feeling alone. Besides, round One didn't make me feel like a full member of the cancer club anyway. Had to make it more official. Between Jim and
, was when I got my phone call.
You know the one.....the one that makes your world stop for a moment. The
one where melanoma and lymph gland were mentioned in the same sentence. The day
I stopped feeling safe. Lorraine
I got my diagnosis one week before Jim passed away. He didn't even know what kind of cancer he had before it took him! Too fast, entirely too fast. But I am glad he didn't suffer long. He was in so much pain. His memorial was surreal and strange. With my own life in limbo, I have never been to a memorial with the perspective I came to this one with. As I sat there listening to the talk, I seriously considered what my own might be like. What song would they sing,? Who would come? What pictures would they show? What stories would they tell? Would I have enough time to plan some of it myself? What a strange thing indeed.
But within the sorrow, I also felt needed. I was close to so many of his family members, I felt like I was able to comfort them in a real and significant way. When a friend feels comfortable enough to cry in your arms, to share pain and anger, you know you did your job as a friend, that your place here on earth is a worthy one.
A few weeks later it was Johnny's turn. His daughter said the sun set beneath the horizon just as he died. A fitting symbol for a sailor to make his way out of this world. We got to visit him in the hospital a week before. Much smaller of a man than he was, and there wasn't a whole lot of him to begin with. I could tell he found joy in our visit. As we left, I told him we would come again, but I knew this would probably be our last. He was going to a better time and place now, a time where he will be young again. I look forward to meeting you again Johnny, when you are young once more.
The week of Johnny's memorial is one that will stick in my head forever. What a horrowing week. I didn't even get to Go to his memorial. I was laid out on a table having my lymph glands removed and my arm being cut and patched. The same day, our dear
was in the same hospital for her lung
surgery. And Richard was due to have his
very risky liver surgery 2 days later. One stop shopping. Sunday morning we got
a call............... Lorraine had died suddenly the night before....... Smack!! You have got to be
kidding me!! She was just about to go home! It seems a blood embolism made it
to her lung. So unfair. It felt like robbery. Lorraine
I am constantly amazed at how in misery there is always light. That Sunday meeting was the most devastating and comforting I have ever been to. Our congregation was being beaten, and beaten hard. So much loss in such a short period of time. And yet we were all here. We didn't stay home. We were where we belonged, with each other, our extended spiritual family. The talk, the study that week, the timing was perfect. As brothers and sisters made comments, their voices were choked with emotion, but we were together. Together. We weren't letting anything drive us apart. If anything, it was driving us closer together.
Another memorial to go to. Another life to remember. More family and friends to comfort. Too much, yet we carried on, gave
the consideration she deserved. It was in the
midst of all this that I got to play the waiting game. Waiting to see if the cancer had spread to my
lymph glands. I'm not sure we could really take anymore bad news. We were
saturated. Those 3 weeks were so verrrrrrrry long. No more, please no
more...........Thankfully we had a bit of a drought in the bad news department. Lorraine
I hope my words won't sadden you too much. But I felt is was necessary to set the scene, to know the climate in which we were in. These people, these events, are all tied up in my own experiences. It is hard to extract one from the other. It was needed. And they deserve to be remembered. I refuse to allow them to be eclipsed by my own struggles. They are part of it. By being there for others, you are able to deal with your own trials. It only proved to me how dear our congregations are. It demonstrated how, we will beyond a doubt, carry each other through.