A horse walks into a bar...

sits down, and sighs. The bartender walks down to where he is sitting, throws him a napkin and says, "Hey buddy, why the long face?"


Well, no long faces here. Everything in my world has been unbelievably good. It's actually kind of a strange thing to find yourself in the middle of an awesome life. It's been a while since I"ve felt that way, but it's exactly what's been going on. If you can believe it, I've even been having a little antsy, just kindof feeling like things areTOO good. Too good you say? I know, nuts. Like maybe I should tone down the happiness a little just in case cancer comes back. Isn't that crazy? It's an absurd thought, but it's true. I'm just so damn happy. Somebody slap me.


Which I guess is why I haven't been able to write much. I still check all my usual blogs regularly, still read up on my peeps out there in cyberland that are keeping me grounded and inspired. But when it comes to offering something to them, I'm sort of at a loss. A couple of them are really battling right now, really pushing through some rough times. Fighting like hell to keep melanoma out of the picture, but it's just not working. I know that the struggle takes so much life out of you that you can barely get out of bed in the morning. That kind of struggle fills your every thought. Every minute of the day is zapped by that kind of struggle. They could use the support that a survivor can offer. Yet, when I write to them I feel like I have nothing of worth to say. No real words of wisdom, no advice that will help them carry on. It's like I'm somehow lost at providing any kind of uplifting words.

I know that the truth is that part of it comes from the guilt that everyone who survives while others don't carries. It's an illogical guilt, but forget logic. It's what's there no matter how illogical it is.

And speaking of illogical, then there is that seemingly built-in instinct to prepare yourself, that distance you feel you have to put between yourself and those who are in the midst of their fight with cancer. It used to anger me back when I was first diagnosed, the fear that people get in their eyes when they know you're in the midst of fighting cancer. But b/c we blind ourselves daily with dissilussions that we're all invincible, reaching out to those with cancer has to, in the beginning at least (until you train yourself to do it instinctively), be a conscious act. I still do that every week, b/c I know I won't be able to live with myself if I don't pay forward what so many did for me.

Nonetheless, the thought of cancer of cancer- what it's doing to friends, what it did (and could still do to me) and others, sends chills down my spine. Even now, it's difficult for me to write that I'm NED and a cancer survivor. I guess b/c I know that I could've been like my friends- Leah, Sarah, Shannon, Oscar, Dad- whose cancer spread faster than they could fight it and their lives were cut short. It seems silly to think that I can say I "battled death." It's silly b/c it was hardly a battle; it was not valiant at all- and more like dumb luck that I came out alright. In reality, though, if you've been following me for a while, you were there when the PET scan lit up, when I came home to write and say, "I really hope it's nothing. It's probably nothing." And when they told me they were almost certain that it had moved to my illiac node, you know that it was a battle just to get through that. The surgery and rehab after was nothing compared to the mental fight I had just to keep my spirits up. It feels like Death is always there, just waiting for you to drop your guard. And you start to question the point of doing anything.

Which is why I decided to stick close by all those friends I mentioned before, the ones I didn't want to say good-bye to, but had to. And I assume my hesitation in doing so now stems from them memory of the pain that I felt in hearing that they'd died. And that they were gone forever.

Maybe that's what it is. Or maybe it was just realizing it for the first time, how possible it all is. Either way, I'm glad for all of this, believe it or not. Every pain and every joy I've received from this journey of mine, and every chance I've had to get to know someone else going through the same thing, even though it hurts so bad sometimes to see what they have to bare. At least we're all alive to see it.

I'm sending out good vibes to all of you in the midst of your own battle right now, and to everyone who's ever had to battle anything. And giving thanks for you, too.

-MM

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

GREAT NEWS!

Ok, we are stunned, speechless, literally.
Not only did the oncologist just come in to check on Lori, he also brought the path report.

NO MELANOMA!!!!!

When the oncologist did the PET scan, he was 99% sure it was melanoma. 1% baby, crazy odds, but we'll take 'em!

We don't know what to say or think. We didn't expect any news until Friday. We can't thank everyone enough for all of your prayers, thoughts and well wishes.

Stunned. Completely Stunned.
More to come...
Bobby