Shannon

Again, I've procrastinated doing the hard things, but it's time to anty up. I'm in San Diego now, but started this post before I left, and have come back to it several times in my thoughts. It's a slow day today, recovering from some debauchery and resting for more to come soon, and I think it's time to come to terms with this topic. I keep asking myself, how can I do her service with one silly post? I pray that this honors her the way she deserves.

Shannon.

The first time I read her blog, I was amazed by her spunk and literally laughed out loud. She had not only that special gift for writing but also a flare for finding in everything -literally, even the bad stuff- something funny. I just spent 45 minutes going back through old posts of hers, and what a blessing it is to all of us to have access to this woman's journey. In spite of myself, I could not stop laughing. To be able to go through so much, and yet never lose that sunny sense of humor, to be blatantly honest and vulnerable and yet so unflinchingly strong, to be in need of friends and support and yet supply that support through her words to so many- only Shannon could pull it off.

And she did. Yet she did it with the greatest humility and the most intense humanity. She said she always had trouble relating to people, calling herself "basically socially inept" and a loner, but I never understood it, because every post was like she was reading my mind. And she had such a sense of love written in every word- she loved animals and was always posting pics of them, she loved being a mom and wanted to be the world's greatest, she brought smiles to so many cancer patients and she never seemed to strike out in anger against all that mounted against her. I took a montage of pics from her blog and posted them here, laughing and smiling at her insane sense of humor.

Case in point? Waiting rooms to her were always "purgatory." She never just wrote, "my house is a mess." Instead, she'd write, "By midmorning, it looked like Christmas had thrown up all over our living room." or "You would think I would be utilizing my time once the kids are in school wisely...but noooo. Into the zone I go. Just sapped; literally wiped OUT. Actually wrote "clean me now" in the dust on my bedroom dresser while a dust bunny the size of a tumble weed rolled by and came to a rest by my feet." I can't help but giggle. I wish I could've heard her say those things, I'm sure she had the timing of an expert comedian.

One of my favorite posts was when she had to get a full body skin check by a new doc.
"The doc also, predictably enough, had to examine the virtual galaxy of moles to be found on just about every skin surface covering my body, then asked if any of my moles were changing. This, after being to countless dermatologist visits, is pretty run of the mill in the life of a melanoma patient. The semi-naked chicken dance without the dancing... Shortly thereafter, the doc instructs me to roll onto my side because he has to check my "backside" as he put it. I have no clue. I am thinking about that mole on my left @$$ cheek and how hard it will be for him to see it if I am lying on my left side. Was I DEAD WRONG. I hear the word hemoccult, digital and rectal called out to the nurse and with a very sharp intake of breath, a gasp that I am sure people heard two rooms down, and eyes literally popping out of their sockets, I stiffened up like rigor mortis set in prematurely."

And yet you knew, even in her humor, how it felt to be down, in your lowest moments. She wrote one time, "I don't think I spent a collective 10 minutes this morning not crying and wallowing in that annoying self pitying state that makes most people wanna nail you upside the head with a 2X4."

I'm going to miss Shannon so much, I can't imagine what her family must be going through. This all seems so senseless, but, as I've been told, people like Shannon are a gift, and we must appreciate every moment we've had to know them. I know that she left me with great words of wisdom that I try to remember every day.

"I wish like hell I never had to imagine the scenario of leaving this amazing life behind, because, simply put, it makes me feel as though someone punched a whole in my chest and ripped out my heart....laid me bare....
But no matter what....Live only in the moment. For good or for bad, that is all any of us is really guarranteed, melanoma or not.
And the beat goes on..."

If it were my last day on Earth...

I'd smile relentlessly, ear to ear. I'd laugh at every funny thing I saw. I'd stop to remember the insane number of happy moments in my life every time my giddiness began to fade.

I'd dye my hair pink, wear it in pigtails with lots of bows and ribbons, line my eyes in glitter and stars, and laugh every time I looked in the mirror from pure delight.

I would allow myself to love myself and therefore everyone else.

I'd forget about my weight, how much money I have in the bank, what others thought of me, and what yesterday brought.

I'd stop blaming other people for how I feel. I'd step away from those people that didn't build up the energy around me, and that looked for the negative. I'd set myself free from any reason to feel held down. I'd fly in my new awareness.

I'd dance everywhere I went, play the stereo as loud as I could and sing at the top of my lungs, drive slowly in the sunshine and soak up the rays, notice every leaf on every tree.

I'd tell everyone I ever knew how much they meant to me. I'd think about how much I learned about myself from all those people that drove me crazy. I'd look up those I didn't talk to anymore and call truce. I'd lay the blame where it belonged: on me. I'd move past the blame.

I'd spend time with my friends and hold them close, unafraid to tell them how much they mean to me. We'd spend hours together, talking about nothing. I'd buy them a drink and we would create another great memory.

I wouldn't second guess a single moment of the day. I'd feel happy I'd lived another minute and I would find reason and a means to celebrate it! I would understand the meaning of rejoicing, of jubilee.

I'd talk to everyone I met in the streets, and when I asked how they are, I'd really listen when they answered. I'd find the things I understood about them and cling to that. I'd find ways to connect. I'd build a bridge instead of a wall. I'd wonder why I ever judged anyone at all. I'd understand why people judged me.

I would instantly forgive. Not just myself, but everyone. For everything.

I'd take a long, unflinching look at myself, and, with compassion and empathy, wonder why I had been so hard on myself. To achieve some goal? To get to a certain point? I'd relish in the fact that this is the certain point. This moment is all we ever have, and I would thank God that I was granted it. I'd wonder why I was scared of the most beautiful gift of all: love. I'd ask myself why I held so many people so far away. And what good did the baggage do? Did I really think I wasn't able to get over it? Inside of me I knew all along I could've dropped the baggage, I could've hit the delete key. I'd wonder why I let it hold me back from so many radiant moments.
And then, just as quickly as I thought these things, I'd forget the past.

I'd let go of all the pain, and let the little stuff slide. And in doing that, I'd realize, isn't it ALL little stuff? I would feel the amazing ability to instantly forgive- not just myself, but everyone. For everything.

I'd fill up on the joy of life. I'd feed a hungry person, run in the park with my dog, play with a kid, dance with someone - spin them around, twirl in the air. I'd enjoy the silliness. I'd do everything I could to make the moment a little better for someone else. I'd feel lit up inside about the amazing amount of good in the world. I'd be overwhelmed with the beauty of so many people.

I'd see my connectedness to everything.

I'd truly, fully, totally live, unafraid of pain. I'd glow in the exuberance of feasting on my life, feasting on the amazing array of possibilities for one single second. I'd forget all the guilt, all the anger, all the grief.

At the end of the day, as I approached death, I would not allow myself to question the most monumental, the most significant question of all: why did you not allow yourself to live this way every day? Instead, I'd fall asleep with the dizzying taste of existence in my mouth, the savor of the marrow of life, happy and peaceful in whatever was to come next. I'd drift in exhaustion without a regret, with nothing hindering or clouding the deep, enlightened restfulness.

And I'd never understand why anyone cried when I left.

-MM


"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
- Albert Einstein (1879-1955)

2 years, 1 month and 141 posts

That's right, it's our "looking back" episode, kids. Cue the music montage.

The very first post on this blog was June 14, 2005, when I'd only known my diagnosis for about 3 weeks. In honor of everything besides melanoma, I've decided to post a top 10 list of some of the most important things the last 2 years have taught me.

So here they are, in no particular order.

1. Normal is something we've all aspired to at some point in our lives (remember those teenage years?). But melanoma has taught me, at least, that normal is just a setting on the dryer. It's a silly term, a crazy concept, and, let's face it, a thing of the past. I spent the whole first year trying to appear normal after the diagnosis, trying not to make anyone feel uncomfortable. Then I spent the last year recovering from Interferon, just trying to get "back to normal." Slowly, I've come to realize that there is no normal anymore. Or, rather, there's a "new normal." Subtle differences and changes that I had to make have made a world of difference since my diagnosis, but, over time, I've learned not to fight it. The way I work, the way I play, the way I eat, the way I think, who I choose to be and who I choose to be around- everything has been touched and changed, and yet, there is no anger in the lack of normal. It's just a new life, sometimes more difficult, but always much more human and mortal and real.

2. Activism is real and powerful. I've been involved in it most of my life, but only after I became Ms. Melanoma did I realize what a difference it can make. I'm touched by so many people I've come in contact with that work hard to bring melanoma awareness to light, and they give unselfishly and lovingly to that greater cause. My advice to you: pass out some fliers, walk a 5k, answer some questions, change a life. You'll inadvertently change your own, too.

3. Friends can make a world of difference. This can go either direction- as in, people you barely know, people you've never met, and people who don't even know your real name can "show up" when it's necessary and make the tough times bearable. On the flip side, friends you thought were family may not be able to hang in there. This is the ebb and flow. Which leads me to #4.

4. Take the good with the bad. Nothing is all positive or all negative, believe it or not, and what we take from experiences defines who we are.

5. Asking for help is not being weak. Or maybe it is. But it doesn't matter. Either way, there will be a time you need to do it. Yes, it's humbling, and yes, it's sometimes demoralizing; I mean, no one wants to ask for help wiping their own hiney. But, in another way, it's a gift. It allows you to see what happens when you are vulnerable, and who will help you to rise above it. I've been lucky, or blessed, or both, but the people that have surrounded me through the toughest times make asking for help a safe and comforting experience. Which brings me to #6.

6. I have the greatest boyfriend on Earth.

7. On a grander scale, cancer has given me the ability to accept that my death is imminent. I've written about this a lot in this blog, because it is such a huge perception change. This last path report gives everyone, first and foremost me, but also my oncologist and doctors, lots of hope that this won't be happening anytime soon. Nonetheless, having this disease has been an eye opener as to the way we deal with our own mortality in this culture, (which, essentially, is by not dealing with it). Why don't we face the truth? We are frail and temporary beings. And it (as in cancer, accidents, disease) COULD happen to us. I'm not planning on checking out, but just knowing how close it can be, I think I live my life more fully.

8. I am more than my diagnosis. Even so, living with disease is harder than you think.

9. We all have an innate strength within us. I can't tell you how many times I've been told by people "You're so brave" or "you have such a great attitude." The truth is neither of those, though. People I know with cancer, friends who have lived with it or are living with it now, they outdo me in courage and attitude tenfold any day of the week. But the fact is, if it came down to it, we'd all be able to get through it, even if it wasn't with the grace and dignity that my friends exhibit. The Duke said it best when he said, "Courage is being scared to death but saddling up anyway."

10. Control, 99% of the time, is just an illusion. The only thing any of us can control is the way we react to a situation. That, perhaps, has been the most significant of all the lessons I've learned.

Thanks to all of you who have traveled this journey with me, and for all you've said and done. Oddly enough, it's been a good 2 years in many ways.

-LL

P.s. Please keep Shannon in your prayers

A little perspective

Okay, yes, it's been a month since I posted. My bad and all that. But hey, it's summer. And although I'll try and make sure it's not another month till my next post, I think we should all just keep in mind that THIS is what I love about summer: living life is getting in the way of everything else!

I can't tell you what it's like to have this time to recoup- to get some real rest, to get my filthy room clean, to have the time to learn the very beginning steps of playing guitar, and to find out what other things I like to do when I've been threatened with my life not to run. But it's been fun having free time and de-stressing, and I can honestly say I'm enjoying everyday. It's going by fast, and I've been busy, but in the way that one likes to be busy. Just busy enough to stay sane. But wait, there's more- the good stuff just keeps on coming- I leave for San Diego on the 18th, and I'll be gone at LEAST 2 weeks. A full blown hiatus. I'm warning you now, I may not come back.

It's been pretty great since the surgery. I look at some of the pics from the hospital, and I realize that most of that stay I don't even remember. Who loves good drugs? But ugh- look how puffy and pale my face was! Talk about needing a makeover. Thanks, by the way, once again, to all of you who sent cards, flowers, prayers, and positive thoughts my way while I was there.

Once I was home, the first week went GREAT. I recovered way faster than I was thinking I would. Then, the next week, the lymphadema in my abdomen set in. It really hasn't been too bad since then, it was just that week getting used to all that fluid in a pretty condensed spot. It felt like a can of Coke under my skin, a pouch on my right side between my old scar and my new one, and the pressure and skin stretching to adjust was pretty uncomfortable. After that week, though, of having to take it easy and stay off my feet, I've had very little pain. Just some after I work out (in small doses) and minor discomfort at most the rest of the time. I am having to wear a compression hose around my abdomen, but I can't really complain. I mean, first of all, I don't have melanoma, and second, I look really fabulous in granny panties.

These summer days have obviously also given me reflection time, and I feel like I've started to recover from the emotional toll of the last 2 years. It's all kinda getting sorted through. It took a while for Bobby and I to really accept the good news without looking for an "except," but it seems now that, (at least I think) we really do understand that the pathology report is a reality. The illiac node was just "reactionary," inflamed from a staph infection I got almost 2 years ago. Negative for melanoma. And that means that, in a way, I've been given what essentially feels like a second shot at life. Not that the first one was ever really gone, but it just seemed to be living under a dark cloud. I can look back now and see that, and see that I put that cloud there and it was me that kept it there. I don't really know what to say about it except that, and to say that if I was in the same situation again, I would hope I could fend off the depression. In the midst of it, though, it's tough. And I'd never fault someone for feeling that way in the midst of so much uncertainty.

I've told this story probably 193 times since I've been out of the hospital, but I went in to the operating room knowing what my chances were of coming out of it with no melanoma. These last 2 years, I've gotten pretty used to the idea that bad news can be the reality. After hearing the prospects of surgery, I was really just hoping for the melanoma to be in the node, and not metastasized elsewhere; because the reality was, at least according to all the opinions I got, there was a fair chance of both. Having it elsewhere, well, that would've put me at stage IV, which is certainly no death sentence, but it is a progression of disease, and, just so you know, that's not what we're going for. Now, knowing it wasn't even melanoma to begin with, it's like looking at life through totally different eyes. Should I have had this kind of hope the whole time? Oh, yeah, definitely. But I didn't, and even when I tried, I couldn't. This NED, it's a gift. It's pretty incredible.

It took me forever to send out thank you cards (and post a blog, now that I think of it), and I couldn't figure out why I was dreading it so much, but when I finally sat down to do them I was filled with what I can only assume was anxiety. Why? I'm not sure, but I think it was just facing what could have been. I would like to say that I have learned through all this to face my own mortality with grace, but the truth is I'm not sure I wouldn't begrudge every moment of it if it came down to it. And yet, I don't see myself with the will to fight like Sarah did, either. She was incredible, the way she never gave up and kept looking for ways to fight the disease. Strange to see me as somewhere in between. It's out of my face now, giving me some breathing room, and yet I still feel like I need to see it there, in the distance. This is what so many cancer survivors call the gift of cancer- the awakening of our impermanence and therefore the overwhelming realization that moments are so precious, and we should do all we can to savor them fully. With all that in mind, I've made up my mind about a lot of things in my future, and I feel so much more confident and secure just being in my own skin. It's been a good month, people.

I'll spare you the sappy poem someone sent me, just know you should all be grateful. And, can I just say one more time, thankyouthankyouthankyou to every single soul that ever took the time to read this blog and think a positive thought for me. I am really so blessed.

-L