Monday, February 17, 2014
Of all the chapters this one has been the hardest to write. The others just came and flowed naturally, where this one came like a small boat in choppy waters. A little disjointed and nauseating.
I think the problem lies in the completion. The others were written after the fact, looking back on memories. Where this one is a current event. I guess it’s easier to write in hindsight. The present is often so unclear. Unresolved.
Right now I find myself ebbing and flowing, in and out of the depression that comes from being "cancer free" or what the melanoma world refers to as "NED". No evidence of disease. I have come in and out of NED the way I have come in and out of this cloud. I told my husband the emotional forecast: slightly overcast with sunny breaks and intermittent black clouds.
Up until now, I have written mostly of what brings me up, keeps me going, but I’ve had my dark days hiding in my room. There are days when my anxiety made me impatient and abrupt. But dwelling on the low points isn’t what gets your through. So I have chosen not to explore them very deeply so far. I wanted to give hope by my words. But the time has come to share some of the bleaker feelings too. It is part of life. Part of my life. Part of what I am experiencing right now. Part of loss. Loss of health, loss of loved ones, loss of "normal". (Whatever "normal" is anyway. )
I know “Cancer Free Depression” sounds like an oxymoron, a contradictory statement, but to my utter surprise, it was the reality I found myself in just a few short weeks after hearing the wonderful news that my lymph nodes were cancer free. “Depressed?! What in blazes! But I’m cancer free! NED! How could I be depressed?!” I think some of it stems from life being put on hold. The problems you had before cancer seemed not so big anymore. When the cancer is supposedly gone, you imagine life will be so much better now, like a fairy tale! But all those things you put on the backburner, suddenly come back to haunt you. All the paper work you put off, the projects around the house, are still there. Life is still there. Sigh.
So what do you do when you find yourself depressed and cancer free. You look online of course. To my delight and dismay, this was apparently normal. Stating the obvious, one article reminded me, “You HAD CANCER”, not the flu. "The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one's body and life are traumatic experiences." The fallout from that is huge. The good ole “Mayo Clinic” had this to say, “Recovering from cancer treatment isn't just about your body — it's also about healing your mind. So take time to acknowledge the fear, grief and loneliness you're feeling right now. Then take steps to understand why you feel these emotions and what you can do about them.” Even though the cancer hasn’t killed you, cancer still kills a small part of you, the part of you that feels safe. The invincible spirit we all carry somewhere inside us, it’s gone. There is grief in that loss. And with grief comes depression.
After my first melanoma, I still had no idea how serious it could be. The optimism surrounding skin cancer almost makes you feel foolish for being worried at all. Thankfully, many can get melanoma and just walk away. They blissfully allow themselves to share the outlook the majority of the world has, "Just cut it out” and all is well. I am happy for those that are spared the trauma of knowing how close they came to having life hang in the balance. Once upon a time, in Round 1, I was one of them. It was traumatic, but not earthshattering, it was a blip on the radar that went away. Certainly, it was a larger blip than average, but still….. just a blip. I thought I knew melanoma and I truly thought that would be the end of it. “Chapter done, move on”. Melanoma was supposed to be just one chapter in the book of life, not a book in itself. I am still hoping this will be a short story, and not a novel.
Any kind of cancer makes you feel unsafe for a certain length of time, until you’re considered “cancer free”. Till then you are on the watch, hyper aware of your body, each pain, or lump. Is it back? With melanoma, that time period is horrendously long. For most cancers it’s a 5 year benchmark. But with stage 2A melanoma, my odds actually go down after 5 years. For me, that means 80% survival in 5 years, and 60% btwn 5-10 years. That seems so backwards. Shouldn’t it go the other way? Even 10-25 years later there is still a 7-11% chance it will metastasize! I won’t be considered “cancer free” till 25 years or more of being NED then??? That is, IF I don’t get any more primaries in the meantime. NED,no evidence of disease, doesn't mean cured, it just means, not in active battle. It’s a life sentence, no early parole. That’s far too long to live with a shadow hanging on the sidelines. Do you “have” cancer, or is it past tense, “had” cancer? NED is neither really, its somewhere in limbo land.
Once you get this deep, literally 2.45mm, melanoma never truly goes away from your life. It is an ongoing concern somewhere in the back of your mind. Most people don't casually check their lymph nodes on occasion, just to see if there is any latent pain hiding there, or an identified lumpiness. But I do. Most people don't see a Doctor every 3 months to check for cancer. I do. Most people don’t have skin removed on a semi regular basis. But I do. If the medical community thinks every 3 months is necessary that kinda makes you a little more wary yourself. Others have described how before every check up, they worry whether a new one will be found. Then if none are found, they worry it might have gotten missed. And if one is taken off, then you wait to see if it’s bad news. Sure you say you will put it in the back of your mind, pretend it isn't there, but your anxiety level speaks differently, and your patience level tells a different tale. Your sleep is a little less easy. Your mind a little scattered. But you put on the happy face and pretend it’s all ok. This game will go on at least once a year for the rest of your life.
But why should you worry so much? Melanoma is one of the “good” cancers right? That’s what your Doctor will tell you if you catch it early. I will let the facts speak.
A 10mm cancer of other sorts, is stage 1, the very treatable kind. On the other hand a 10mm melanoma is tantamount to a death sentence. A 1 millimeter melanoma tumor (one-tenth the size) already carries a significant risk of having spread. In fact, I was surprised to find out that the survival rates for stage 2 melanoma are the same or worse than for stage 3 breast cancer. The overall 5-year survival rate for patients when detected early, is about 98%. It falls to 62% when it reaches the lymph nodes, and 15% when it metastasizes to distant organs. And it can grow and spread very quickly compared to other cancers. Once spread internally, melanoma is very difficult to treat, since it doesn’t respond to conventional cancer treatments. For stage 4 melanoma patients, that’s the last stage, the American Cancer Society recommends this: “Because stage 4 melanoma is very hard to treat with current therapies, patients may want to think about taking part in a clinical trial.” Experimental treatment is your best option? Yikes! That is daunting. There is no “usual” treatment plan per say. So even though it is easily preventable and easily treated at its earliest stage, it is not one to mess with. You don’t want this cancer to get a foot hold. You want to catch melanoma at stage 1! Even then, you can go from Stage 1 NED to being voted most likely to die, within those 3 months between you scheduled Doctor checkups. If you were faced with this as a possibility, would you be worried? Would you want to be informed of new treatments when they came available?
After round 1, the depression and the shame came and went within 6 months. Then I began to live again, feel “normalish”. I still felt a sense of safety, and control. I thought as long as I kept up my skin checks, all would be well. I would just catch them all early. But after round 2, safety was blown out of the water. I was realizing how serious this was, the stats were no longer so sunny, and control was become slippery. But Six months seems to be my personal yardstick for the depression period, and I felt myself getting past it, feeling a teeny bit safe again. I was ready to tackle the next coming years, thinking of moving forward. But melanoma had a different plan. I had barely gotten the chance to catch my breath when round 3 began!
Have I told you about Round 3???????
Feb, 2013, at my regular checkup. Dr. Derm is doing his usual looksee, in the cute gown and conscientiously warm room. Totally routine. “Are you wearing sunscreen? Taking Vit D? How much are you taking?” He moves aside the gown from my “gluteus” area and pauses. Then squats. Then gets out his measuring tool. Then his special light and magnifier. He has been looking at my buttocks for an uncomfortably long time. Then he says, “I’m just going to put a bit of water on this one, sometimes it helps me see it better” More magnifying, more pausing. “Can you lay on the examining table for a moment?” Then ……..“I’d like you to make an appointment to have that one removed, it has grown significantly in the last 3 months”. Awe man…….
When I felt it later, the offensive mole, it had texture, just like my first one. People tried to console me by saying it was probably nothing, but I was sure, 99% sure, this was another melanoma. When I looked at it in the mirror, it looked like a piece of dried raisin stuck to my butt. Dried raisin attached to your skin isn’t good.
I was so disheartened when it came back as my third melanoma. This CAN’T be good. I could see the statistics sinking in a downward spiral. The numbers have been stacked the wrong way round. I was winning every small number lottery. Only 10% of melanomas are hereditary. This one certainly was not caused by the sun! Only 6% of melanoma patients get a second primary. Won that one! Twice! I don’t want to win the small number lottery with this disease. I’m not a gambler! How did the numbers get stacked this way round? I felt, and still feel, like a walking time bomb. Problem is, I don’t know how long the fuse is, and there’s no way to check. With control pretty much out of my hands, I could feel depression laying down on me like a heavy blanket.
As I felt myself sinking into darkness, I did what I have always done, I turned to the “pen” for healing. Words are my friends. I love words. How they have such deep meaning, nuances and shades. The further I delve into their rich history, the more I appreciate them when used properly. Words would become my friends and comfort. And sharing them with you has made those words have life and meaning. It gives meaning to the meaninglessness of this experience. Of cancer. So I started to write. It was the only way I could put a sense of control to the uncontrollable. And it was a savior.
I turned to talking to you. I shared my words and thoughts on my blog. Now I needed to know the beast I faced, inside and out, and I shared the information I found on my facebook page. I did this for myself, and for you, in hopes that I could provide understanding, and give the gift of knowledge. Maybe my understanding and knowledge could give you the power to determine a little piece of your own life. Maybe I could help you cope by seeing what has helped me.
In my research, I found out that half of all cancers are preventable. I also found out that of all cancers, skin cancer is the most preventable. Sadly, I also found out how misunderstood and underestimated skin cancer was too. I wanted, ….no, I needed, to talk to someone. As the opening of my blog says, “In Round 3 of my battles with Melanoma, I have decided to no longer sit on my hands. It’s just too much. I needed to let it out of my "skin". Be an active participant in this cancer thing, instead of just hoping it will stand at the doorway and leave me alone. And so I will write……….”