Wednesday, December 21, 2011

Where Is The Peace of Mind?

I love what I do. I love the people I meet and the conversations I have. In an odd kind of way, I love the doors God has opened for me since melanoma came into my life in July 2008. I love and appreciate that God has found a way to use this rocky road in a way that can diminish for others that which seeks to diminish me. And it brings me a sense of peace.

There is very little actual "peace of mind" in melaworld. Some of us would add that there can also be little "piece of mind" as well. That one is self-explanatory, though. Oh what the heck...:).

I do not know how it is with other cancers. I can only speak of how it is with melanoma in particular. If this hits home with people of all cancer walks, so be it. I'm sorry that it is what it is.

Yesterday a comment was made on Melanoma Prayer Center, by a wife writing about her husband, that he's wondering "where is the peace of mind?" as he ponders the decisions he must make. Her comment about his question and the question itself have stayed with me. That's the thing about melanoma: there is no "peace of mind."

From the moment of our diagnosis, we are given statistics and other numbers, particularly a stage number. With that stage comes whatever options are available for fighting at that particular stage. Right now, there aren't too terribly many options available for any stage of melanoma. But, hallelujah, there are more now than there ever have been. There are also more new cases being diagnosed now than there ever have been. With new cases come new people and we are all different. Not all options are for everyone. (Not all cases are diagnosed at stage 0 or 1, or even 2. Many aren't caught until they are in the stage 3 and 4 zones. I'm stage 3b and have been since mine was diagnosed).

My options in 2008 were surgeries to remove the lymph nodes under my left arm (I had a cancerous mole on my upper left arm) and Interferon. I had all 27 of my lymph nodes removed in two back-to-back surgeries and opted not to do the Interferon after doing a lot of research about it.

That was my judgment call after learning all the side-effects of Interferon. I knew my body and system well enough to know that I couldn't handle it and that I could well end up being one of those people that chemo kills before the cancer does. I can't take aspirin or Tylenol without experiencing side-effects. There was no way I was doing Interferon following my surgeries. Technically, the surgeries removed the melanoma, but I'll never know because it had traveled to those nodes and even though the vast majority were cancer free, that doesn't mean that there isn't a renegade cell somewhere, that broke loose, and is waiting to pounce in my brain or lungs. If that happens, I'll need to reassess any chemo options, but I'll be here to do it and I'll have my health and strength for the fight. In the meantime, there's no "peace of mind."

People who opt for Interferon and other treatments don't get "peace of mind" either. What we all get are more statistics. We never know what works. We never know if or when there will be a recurrence. Garden peas, we don't even know if we'll make it through some of the tests or surgeries! Everything carries risks and we have to weigh those risks and the scales are never balanced and we never know which way they are tipping. And we never know which side of any statistic we really live on.

I'm a patient at Duke. I show up for that PET/CT scan before my surgeries and get told, you can feel free to recite these words with me, "I'm required to tell you that people have died during this test. You can still back out, it's not too late. But, if you choose to go through with it, you need to know that you might die. Not many people have, but because some have, I'm required to inform you that you might. Sign here if you understand this risk and choose to still have the PET/CT scan."

Here's what that scale looks like: let's see...have the scan and maybe live or maybe die, but I'll probably live. Don't have the scan and there'll be no surgery so I'll definitely keep the melanoma that's there and die a certain death. Hmmm...possible fairly quick death far too early OR a definite horrible, long drawn out death far too early.

So I signed the waiver, had the test, and guess what? This is the honest truth, when I had the test I was in full-blown menopause and 48, almost 49 years old. You name the symptom and I was there. I was "looking forward" to much more of that fun to come. After the scan, I never had another symptom. Menopause stopped altogether. A part of my system stopped doing what it was doing and was supposed to do. Nobody ever told me that might happen! Where is the peace of mind in anything? I would have still had the scan if had known this would happen. See the paragraph above about the scale.

There is no peace of mind surrounding any of our decisions when it comes to melanoma because we don't know how this disease is acting within us and what it will and will not respond to when it comes to treatment. We just don't. We have to know ourselves, trust our doctors, and pray. A lot of prayer for wisdom, guidance, miracles, healing, peace. We pray for that elusive and illusive peace of mind. We live with statistics.

We all have them. Mine is a 30-35% chance that my melanoma will return in the next seven years. When I was given this it was within ten years...a little over three have passed and so far so good. NED, no evidence of disease. To the untrained eye, that may sound pretty good. I have a 65-70% chance that it won't return in these next seven years. Nope, no peace of mind here. Let me explain why and in no particular order:

One: Let's say I breeze through the next seven years all clear. Well, those seven years will not have been a "breeze." They will have been filled with constant worry and dread that every new "something" is melanoma. They will have been filled with various doctor appointments keeping a check on this disease. And after the next seven years pass, assuming I stay clean, there will be no 100% guarantee that melanoma still won't return, I'll just get a new statistic. There's never peace of mind.

Two: Every statistic is made up of people. There are people who will, indeed, be in that 65-70% and will stay melanoma free for the rest of their life. But they'll have to live the rest of their life to realize it for they will always have the melanoma-specter pursuing them and they'll never know where or if it lurks. They will know no peace of mind. There are other people who will, and do, make up that 30-35% stat. It will recur and it will recur in a major organ...or maybe as another primary somewhere else on the body surface. I've seen this one lived out in a colleague. It happens. It could be me one day. Seven years down the road. Ten. Twenty. No peace of mind on this road.

Three: God doesn't promise to whisk this storm away or turn it into something it's not. He doesn't promise to bring some miraculous cure into my life because I am who I am. He promises, instead, to walk with me because of Who He Is. (Please take time and read the post "Miracles"). While this should bring a sense of "peace of mind," to be honest, it doesn't always. I'm human and sometimes the dread of this disease coming back is downright scary. I know the stories and I've seen the pictures and videos of what melanoma does and I don't...DO NOT...want that. I don't. Melanoma does what it does and it is what it is and "peace of mind" is not part of melanoma's package.

We know that, though. And we learn it early. So, we learn to take what we have to work with and we learn to take and weigh our options and go with what seems to be the best at that particular time and we hope for the best, prepare for the worse, and pray through it all. We move forward and we learn to try and not second guess ourselves because we can't go back and change a course once we set out on it. We understand that a lack of "peace of mind" accompanies us, but we also learn that God accompanies us as well. He also places terrific people along our path to help us along the journey. Many are devoted family and friends. There are those we meet in cyberspace. There are those we bond with in hospitals and doctor offices and clinics. They help us attain a modicum of "peace of mind."

While melanoma doesn't know the meaning of "peace of mind" and doesn't want it in our vocabularies either, I want to encourage you that God does know the phrase and God does want us to know that peace that only He can give. It probably won't resemble "peace of mind" too closely, not all the time anyway, at least not as society and culture define it. But we can know "peace" in our spirits as we move through this storm. Again, being human, there will be days when we don't know God's peace for various reasons, but God will still be there with us.

I began this post acknowledging that I find "peace" in doing this. In writing about melanoma, in encouraging people in their battle, in private email and Facebook messages counseling people who turn to me for hope, prayer, empathy for the battle and hope and help when they are dying and preparing to rest from their battle.

I find my sense of peace in knowing that God uses my journey to help others with theirs. I find peace in being used to diminish the beast that desires to diminish me. That's not a sense of peace as the world gives. It's a sense of peace that God gives.

And I am peaceful and I am grateful.