Saturday, March 27, 2010

Give me an inch, I will take a mile.....

About 13 years ago, I had a tiny spot on my upper back, under a bra strap, that would not go away. It was in a location that was very hard to see, and it took awhile for me to pay attention. It would catch, then it would bleed, then scab over until the next time, and we would repeat.

After a few weeks of this, I was tired of treating the blood stains on my clothing, so I decided I had better get serious about healing it up. I put a bandaid over it with a little antiseptic ointment, figuring with a little protection, it would be gone in a day or two, and that would be it.

Things didn't work out quite the way I expected. It didn't heal, it continued to bleed on and off, and this tiny little spot, no bigger than a pin point, really, just would not go away. Finally, I made an appointment with my doctor to have it removed.

This was not my first trip into his office. I had been there many times before to have suspicious moles looked at and the occasional dysplastic nevi removed, due to my high risk for having melanoma. (Fair skin, blue eyes, so many blistering burns I can't count them, difficulty tanning, the list goes on and on.)

I thought at least this time there wouldn't be the worry about what it was, because it in no way fit the risk factors for anything serious. I didn't think it was a mole, and I didn't recall having seen it there before. It was tiny, pin point sized, and perfectly round. It was raised, but that was only because it kept scabbing over. The edges were irregular, but of course, the scab was my explanation for that as well. It just appeared to be an irritated spot, and I wanted to get rid of it.

The couple weeks wait before I could get into his office passed quickly. When I got into the examining room, the doctor, who has a lot of experience with these kinds of spots, said he didn't think it was anything to worry about. However, he agreed it needed to come off, since it just wouldn't close up and heal. He also said he was sending it in to a lab for testing, just to be on the safe side given my history of dysplasia, which seemed like overkill to me, but I was just happy to be over and done with it.

It was a quick procedure, although it seemed more painful than usual. He told me when he had finished that he had taken enough that it required taping with steri strips, which would fall off on their own. He also warned me to make sure I kept it dressed with a bandaid until it was fully healed.

I thought it was odd, for such a small spot, to have taken such a large amount around it, and the wound went rather deep. But he reassured me before I left his office that although he would biopsy it, he didn't think it was anything to worry about, and I didn't need to come back unless it gave me trouble.

I went home, not thinking about it any more, and figured no news is good news. I thought very little more about it, other than the wound hurting for a day or two.

A couple of weeks later, I received a phone call from his nurse, and she uttered the word that I had been waiting, in the back of my mind, to hear for so long. "Because the biopsy revealed melanoma cells, we need to get you scheduled for a follow up exam."

I will never forget that moment.

It took my breath away, and my stomach knotted into a ball as I stood at the end of my kitchen counter. I don't remember what day of the week that call came, but I will never forget how it felt to hear the word cancer applied to my own life. I had very young children, I was only in my 30's. I had too much life left to have cancer, (and a very deadly form, moreover.)

I hit bottom with a thud, then realized it had to be a mistake. The doctor had never notified me, they didn't call and have me come in, nothing. Obviously, they had the wrong patient; had mixed me up with someone else.

I heaved an internal sigh of relief, and then told the nurse that I thought she had the wrong person. I confidently told her I hadn't been notified of anything like that, I only had a small spot removed, and it was over and done with. She asked me to hold so she could look at the original report again, to verify her information.

It was a long minute while I awaited the official reprieve - although I have always been the queen of denial, it is a lot harder to live in ignorance when you are waiting on hold for the doctor's office. But still, I knew in my heart that it was a mistake, and waited with confidence to have it cleared up.

The next voice I heard was my doctor, apologizing, and trying to explain. I don't remember exactly what he said, I sort of blanked out as he was talking, overwhelmed at the sudden turn my life had taken. I do remember him saying that somehow, my report had slipped by him, and that he was sorry I had gotten the news on the phone. I also remember him telling me they only saw a few cells in the top layer of the skin, that it was caught in the earliest stage possible, stage 0 to 1, and that they were certain they got everything with the biopsy.

The other thing he said are the words I have embraced since that day - I was lucky, because most people wouldn't have gone in and done anything about it. Melanoma is a rapid and deadly killer, and six months later might have been too late. Except for the extreme good fortune that it was in a location where it was being irritated, I might not have seen it until it was too advanced to treat.

An inch to the right or an inch to the left, and this story might have had another ending. That inch very probably saved my life.

Other than my immediate family and a few close relatives and friends, I have rarely mentioned my brush with cancer to anyone.

It is in part denial, I suppose. I am good at ignoring things in hopes they will somehow evaporate, although that has never been a particularly winning strategy, so I'm not sure why I keep trying. Until you talk about it, it's not really real, goes the thought process, so don't talk about it, and it won't be happening.

But it is also partly because I have never really felt like I had cancer, so I never felt it was right for me to say that I did. I didn't know what I had brewing at the time, and it was already gone before I found out. Talking about a cancer that was barely there seemed somehow wrong, because I didn't have a life battle to tell about; no chemotherapy, no radiation, my hair never fell out, nothing. I had a bit of minor surgery, it was gone before I knew it was there, and my life went on as if nothing happened.

The only time I have ever really talked about it is to yell at my kids to put on sunblock, because of course, they now have a family history of melanoma. Where my kids' lives are concerned, I cannot afford to play dumb, and neither can they.

I have always framed this experience for myself as being lucky, because it could have been bad, if I hadn't gotten it removed when I did. I refer to it as baby cells, just developing, no big deal. I never use the word cancer, really it was just a spot that could have been bad, if I had waited.

Of course, for the first year, I returned for checks every three months, then the following few years it was every six, to be certain that it didn't return, either to that spot, or somewhere else. Melanoma is one cancer that is at high risk for returning, and they are very careful in follow up treatments to be certain that it has not recurred. In between visits, I watch every mole on my skin, and any time there is something new or different, I keep an eye on it, and my doctor will see it next time I'm in her office, just in case.

There is disagreement among the experts about whether dysplastic nevi actually turn into melanoma, or whether melanoma is itself the spot from the first day. All I know is that I had a spot that caused a small problem, and because I paid attention, I am here today to tell you about my experience.

Why am I suddenly telling the world something I have been reluctant to admit even to myself? It is a fair question, and the answer is two fold.

The first answer is the quick and easy one - early detection saves lives. I am here today because I noticed something unusual and acted on it. It is critical to be aware of our own bodies, and to notice changes. You should never be afraid to talk to your doctor about anything that has changed, or seems different, or feels funny about your own body, because that is how lives are saved.

But that desire to warn people, alone, has not been enough to bring me out of my insulated shell. I am selfish enough to want to control my experience, and the desire for privacy has trumped everything else until now.

Last night, I reluctantly attended an event at my daughter's high school. Relay For Life is an annual fundraiser sponsored by the American Cancer Society, and I have always carefully avoided it. One of the things they do at this event is to honor cancer survivors. Given my attitude, that is a little awkward for me, so I have never been a part of it.

However, last night's event was co-chaired by my daughter. She found out at the last moment that there were very few survivors planning to attend, and she was trying to think of more people to invite that they could honor. She called out to me to ask me who I could think of, when suddenly, she stopped and said, "YOU are a cancer survivor. YOU can come and be honored."

If you had hit me with a brick in the middle of my forehead I could not have been more gobsmacked.

It was not an aha moment for me, it was a moment of panic, as I tried to back away from her words. I thought of all the people I know who have survived a real battle with cancer, and volunteered to contact everyone I know to see if there were more people that would be willing to attend and claim that status with pride.

She was disgusted with me. Even as I was carefully explaining to her and her boyfriend that I was not, in any way, a cancer survivor, she rather brutally reminded me that I have had melanoma, and that is cancer.

That is the thing about one's own children. They are not afraid to cut through the carefully constructed illusion and just throw the truth down on the table in front of you. Well, mine aren't, anyway.

I went to bed, having reluctantly agreed that I would think about it, and we didn't talk about it much more. I did agree to attend, not because I felt like I deserved to, but because she needed survivors. I qualified on a technicality, and I wanted to help her out.

When I arrived for the dinner, I received a T-shirt. I looked around at some of the people wearing the shirts, and was shocked to see the number of kids in purple. Cancer is an equal opportunity scourge, and that dinner was a good reminder of how far we are from eliminating it.

After the dinner, attended by a few people including one of my best friends who has survived her own battle, we all gathered for a picture. I put on the T-shirt without really looking at it, but I still didn't get the message that was meant for me.

Then we went into the gym for a short program. That program has changed my view of both my own attitude, and what it means to be a survivor.

During that program, I heard a woman talk about her battle with breast cancer. She is alive today because she was persistent, because she refused to take no for an answer, because she knew, when everyone else told her otherwise, that something was wrong, and she kept on searching until they had the right answer for her.

That woman is my template for what it means to be a survivor. She shouldn't even be here right now, and she has defied the odds. It is inspiring to be in the presence of people with such courage, and humbling, as well. When she called on the other survivors there to step out onto the floor to be recognized, I felt unworthy, like a fraud.

Following her talk, the survivors started the relay by taking a victory lap around the gym. It was a moment that changed my perception, because I had in front of me two people in purple T-shirts, and for the first time I read the message on the back.

"Happy Birthday is a victory song."

That is the message of survival, and it spoke straight to my heart. I am here today because of early detection, fluke though it may have been, and that is my story of survival. Each person who has battled cancer has their own story, and my story doesn't diminish anyone else's, nor does theirs diminish mine.

On the contrary, my story is the storybook ending, the hoped for outcome, for every person who has had that dreaded moment of hearing the word cancer applied to them. In fact, I would wish for every single person, and their loved ones, the happy ending that I was lucky enough to enjoy.

I was aware of my body because I got the message long ago that early detection is important, and now it is my turn to pass that lesson along to others. I will soon celebrate my 50th birthday because someone else taught me that early detection is the key, and everything went right for me. My story could have turned out differently, but for the warning that I needed to be aware of my body and what it was telling me.

It has been more than ten years since cancer gave me a passing blow, and in the eyes of the medical actuaries, I am back to square one - as if I had never had a cancer cell invade my body, and my mind. But if I am honest with myself, it has changed me indelibly. You cannot brush up against cancer and be untouched, no matter how fortunate you are, or how easily you got through it.

I worry about my kids using sunblock, and I wear sunblock religiously myself, where I otherwise probably would never have thought about it.

I don't go out in the heat of the day, and I don't want anyone else out there, either, because it is too much risk, and nothing is worth that.

I avoid situations in which I could get burned again, because I cannot afford even one blister any more.

I do a mole self-check every single month. Whenever I find something different or unusual or changed, I make an appointment to be seen by a doctor immediately instead of just brushing it off and pretending it doesn't worry me. I am aware of the signs of melanoma in a way that most people aren't, and I am constantly on the lookout for the next suspicious spot.

I make sure that my doctor keeps an eye on my moles each year at my annual physical, just to be sure that I haven't missed anything.

Although I don't dwell on it, I am never far from awareness that my life could have turned out differently, and I have deep gratitude that I was lucky when it really mattered.

Today, I am going to add one more change to the list because of attending that dinner last night. I am going to remind people whenever I can that early detection is the key to long term cancer survival. The earlier you find it, the more likely you are to beat it. It's that simple, and I am living proof.

On my next birthday, and every one thereafter, I will celebrate my survival with my family and friends. When they sing Happy Birthday, I will hear it in a new way. I will embrace the victory that I have experienced, and I will have a new appreciation for the life that I have been given.

In the meantime, I am going to frame a ruler and hang it on my wall as a reminder to everyone who comes in my door that early detection is one key to survival. And I'm going to take the inch I've been given and fight for the whole mile. Life is a gift to be shared, and I celebrate the living.

I want to pass that life saving gift to you, as well - early detection could save your life. Be self-aware, and don't be afraid to ask your doctor about anything that worries you. Schedule your annual physical today, and do the testing your doctor recommends, even though it seems like a waste of time, or you don't want to. Early detection saves lives, and next time it could be you.

Here is a website to learn about the early warning signs of melanoma, complete with pictures. http://www.skincancer.org/Melanoma/Warning-Signs.html

Happy birthday to Mom, Tootsie, Becky, Denise and every other cancer survivor out there. Today is the best day to celebrate your victory, and I cherish each day you have won.

I wish you an inch. It's up to you to run the mile.