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

So many things to say

Well, my 5 day stay at the hospital has come to an end, and the news that seems so unlikely and too good to be true turns out to be real afterall. Free and clear. No melanoma.

It feels- amazing. Amazingly like it used to before I knew what a cancer diagnosis was like. Like I went and had my first mole removed and the path report was negative, and now I can go on with my life without the worry of all the stuff that coulda been. Like life never got scary. Amazing. I still tear up when I talk about it.

Now, I know that I'm still a survivor, and I still must be vigilant, and I know all that comes with that. I'm sure that in a few weeks or months when it's time for scans again, that I'll be scared until the results come back, and that I'll still panic over new moles or strange pigments or funny aches and pains. But I feel, today, like I've won the lottery and I've no limit to what I can do with the gift I've been given of "no evidence of disease." Free and clear.

And, yet, of course, I am hurt, too, by the fact that we have all lost Sarah. I simply can't believe she's gone.

Since February of this year, I have lost four people to cancer. I can't say how it hurts to write that.
Cancer is almost always a whirlwind of a mixture of the strangest feelings- joy at the good results, pain with the bad. Grieving the loss of all you had in your life (or at least you thought you had) before the diagnosis, and rejoicing in all you've learned and figured out about life since then- like the precious gift of a single moment. There's the joy of meeting the most amazing people on Earth, making friends across the country, drawing strength from their journeys- and- the flip side of that- is hearing that this stupid disease beat their spirit once and for all.

A few weeks ago, I wrote about Oscar, and I said that my first instinct when I thought about his death was a sense of relief that he was finally out of pain, out of the battle. At ease. And, after that feeling, it was simply a matter of getting past the missing him. I know that everyone that knew Sarah is probably feeling this same thing right now. But I can't tell you how much strength I drew from her advice. And I'm angry in the selfish way that she deserved so much more. I read her blog again and it's like I'm reading the story of a superhero, who put her private self out there so other people could learn. Amazing how she never gave up and she fought her way through the system to make sure she'd find a doctor who would treat her to fight melanoma till her last breath. And now that she's gone, it's stranger than ever.

So, again today, is the whirlwind. And I am just soaking it all up- the ache for Sarah and Derek and the joy of the gift that I know I have been given. It never makes sense, but I think to seek reasoning or consolation or an explanation is only inviting a conflict that I can't resolve.

Once again, no tidy wrap-up, but a quick petition to the higher power that is (or is not) ruling all this: thank you for my time knowing Sarah, thank you for lending Sarah to the world for a while, and thank you for the grace I've been offered, too.

-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

A small view into the life of melanoma

Guest post, Bobby here.

Holy Crap!!! I have a little story for any of you cancer survivors out there, heck even those of you that are loved ones, friends, family, pizza delivery guy, whatever.

I have a little story for you and it goes something like this. It may wander, but it has a point, trust me.

When I was but a little lad my dad took me on a fishing trip. On said fishing trip, I, being the manly type (not really) took my shirt off for the day. If you don't know me, I'm a freckly type kid, now freckly type adult. Yes, I got a sunburn, a BAD one on that fishing trip. My shoulders and back were especially toasted. I got home and my mom freaked. She was screaming about skin cancer and how you don't want that. I thought, eh, no big deal.

Flash forward to a couple of months ago when Lori and I were checking each other for moles, let's keep it clean people. Anyway, she said there was a couple I should have checked. So, I made an appointment with her dermatologist, the aforementioned Dr. Beautiful in a previous post.

I rescheduled a handful of times and I know why. I was scared. "What if's" were running through my head. So, I finally made an appointment and kept it. I told Dr. B. the story and he said take off my shirt, unlike Dr. Gomez who can have your pants off in under 2 seconds...I digress.

He takes a look and says "Oh yeah, we've got a couple of winners here. They need to come off." Now, if we compared pain tolerances, mine would be in the wimpy section while Lori's is in the tough as nails section. Anyway, I didn't know he was going to do it right then and there. But he did. He froze one off that's a rather large area on my shoulder, said it was fine and it will fall off. Still hasn't, but I think it's getting there.

But the other one on my lower back was suspect and he wanted to cut it off and send it out for diagnosis.

Now, this is where this blog will tie together. They said in about a week I would know the results and I'll be honest, I tried not to think about it. So, a week later I get a phone call from a number I don't recognize which I don't answer, standard procedure. But as it's going to voicemail I get this nervous sensation and I thought it was the Dr.'s office calling. It was.

Here's what the nurse said on my voicemail: "Hello Mr. Frrrriiissskkeee, this is the nurse from Dr. Beautiful's office. I need to talk to you about your results from the mole we sent off for testing."

AAAAGGGHH!!! My anxiety went through the roof. The last time I had to wait for results like that, I of course didn't answer and on my voicemail they said everything was fine.

This was crazy anxiety. I don't think I've experienced it before like this. So, I quickly call back and the nurse is at lunch. So, now I have to wait until she gets back.

Heart pounding, check.
Nervous sweats, check.
Freaking out...priceless

When she calls I'm practically shaking. She tells me it's mild dysplastic nevus (spelling?) and everything was fine, but to keep an eye on it. whew.

What I'm trying to get across to people who don't have cancer is, I cannot believe the amount of anxiety something like this produces. It was enough to make me a nervous wreck for one tiny mole. And you people here that are fighting cancer, waiting for diagnosis, updates, pet scans, MRI's, doctors reports or even just waiting after treatment... Well, it takes a special person to take all of this in stride and us people need to realize how much of a toll it can take on our loved ones fighting this crappy disease.

Lori's getting ready to go in for surgery and I'm still dumbfounded by how she can take this in stride. I would be a nervous wreck, instead I'm in denial, that's supposed to be funny, but true.

I have (another) whole new take on how things are.
I hope that makes sense.

A quick Lori update... She'll probably be in 3-5 days depending on how things go. The wonderful Mandy, best friend of Lori's and all around good person is coming in from Cali to help out.

After Lori recovers she's heading to Cali with Mandy and hopefully we're all going to meet up in Vegas sometime before school starts back up.

Lori sends her love. To all of the people out there who cancer has affected, I say this,

F CANCER!

Peace,Bobby

Great Quote

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us.
Nelson Mandela

Our Blessed Lady of Surgery: The Patron Saint of No More Friggin' Melanoma

So surgery has been officially set, and I get a little time off from school before hand, so I'm fairly happy with that. Yes, it sucks that this is what my vacation fund is going to, and it sucks that this is what I'm doing the first part of this summer, but such is life, I suppose. And considering what's going on with all the people around me, I really feel like I should be counting my blessings.

Just in the last week or so have I come to the realization of just how scary this surgery is to me. Maybe I knew all along and just didn't want to think about it, but one night Bobby and I were sitting, watching tv, and it just hit me that I knew why it makes me so nervous that it's so quickly approaching. When I started to talk about it, I got butterflies and that adrenally feeling like I do just before they roll me into the operating room. In reality, I know that things will be a lot better than my last surgery, and that I'll be in the hospital where meds will be available and I'll be able to recover well. My last surgery was the removal of all my lymph nodes in my right groin. The incision started about half way down my thigh, crossed over just above my hip, and stopped about 3 inches above the hip bone. They also removed my little pinky toe and a small part of my foot at the same time. It was, how do you say?, intensely painful, especially since I didn't have insurance at the time and had to do a "day surgery," which basically meant that after I came to, I had to get the hee-haw outta there. That meant getting out of the bed and into a wheelchair, out of the wheelchair and into a car, out of the car and walking into the house. Ouch. Yes, there were pain meds, but nothing really prepares you for walking (or should I say attempting to walk? more like dragging myself on crutches) just hours after they staple (87 staples, by the way) you shut. A full 10 on the one-to-ten pain scale. I didn't even know that pain like that could exist. Forget childbirth, if that's what it's like.

So there's something to be thankful for right there, kids- I won't be doing THAT this time around. I plan to use that to my full advantage, too, and to bask in the gratitude. But yes, I am a bummed about having to do this again. I'm also pretty bummed about the fact that I was just starting a half-marathon training program, and am running 3 miles fairly effortlessly these days, and now that's going to be shot all to hell. I really wanted this summer to be an opportunity to get back in the habit of working out 5 days a week, and I know what this surgery means for all that. My doc is hopeful that maybe I can pick up bike riding a few weeks after (I need to contact Holly about this, by the way), so that I can be up and moving and squashing the chance of a blood clot, and I'm all for that, too. But running has always been a real passion of mine and I'm sad that it's not going to be around for a while. I'm really sad, actually. And let's just say it, I'm pissed, too. I'm pissed even though I know things could be so much worse for me, and yes, I'm struggling with that, too. But since I'm being real, I'll just break it down for you.

I'm only out from Interferon 8 months, which has been about enough time for me to get things back together, to get to a place where I feel physically and emotionally like I'm finally back on track. And it's taken me all this time just to get my body used to running again, even though I do struggle with lymphadema and such, it is so much better than it was, and with the right tools, I've found it's even manageable. Now, now that I'm here, guess what? It's back.

That's just so wrong. I just want to scream (at who, I'm not really sure- or what?- my body???) "Leave me alone! I just want to live my normal life!" And yes, this is the reality of life after cancer- a constant maintaining of one's self, a constant "on guard" status. In reality, there is no life after cancer, there is only life after diagnosis, which means you do scans and you check yourself and you see docs regulary and you just accept that it could one day manifest itself again. That becomes a reality of daily life, that cancer could be back any day. But until it recurrs, I guess you just fool yourself into thinking that you did your time and you can get on with your life again. And if it happens, you'll face whatever comes when you get to it. Which is what I did. But I don't want this. I want to be able to work out and have a summer vacation and spend time away from work without having to live my life around cancer. I don't want to spend 6 weeks recovering from surgery, and then another who knows how many weeks trying to build up some sort of physical endurance again. For that year on Interferon of forced coach-potatoe-hood, I just packed on the pounds, even though everyone around kept saying, "You barely eat anything. I don't understand how you're gaining weight." Alas, I am a medical marvel. Part of that was how my body reacted to Interferon, and part of that was an infamously low metabolism that picks up dramatically when I commit myself to working out regularly. Interferon pushing me into pre-menopausal world didn't help with that issue, either. And now, I am scared of weight gain happening again. I know that sounds silly in the big scope of things, but this is part of my health, too, and I am tired of having so little choice in what is going on with my body. I don't even want to think about having to start all over, trying to get back to a normal physical state. And this isn't even normal. This is the starting over. After surgery, that will be the starting over from the last starting over.

More trivial things to complain about, you say? Sure, I've got them! I don't want to give up my favorite hobby and learn another sport. I don't want all of this damn money I've worked so hard for to go to something I care so little about. Life is too damn short. I want to live each day to the fullest without being confined to a hospital room or a bed! I want life without staples, without surgery, without 6 weeks recovery time.

And yet, most of that life is gone. I still grieve for that life sometimes, though most days I've accepted this new life, and can see the benefits of it, too. Would I trade all I've learned if I had a chance at getting my old life back? Today, yes. Yet, once again I must acknowledge how lucky I am indeed, to have all that I have, to be dealing with one tiny lymph node instead of other things, to be where I am today, to have the support that surrounds me. And I've committed to living life fully, no matter my circumstances. I'll do everything I can to live as normally as possible while I'm recovering, and I'm pretty sure that won't be as bad as I'm making it out to be tonight.

That's all for now, kids. Tune in next week, same Bat-time, same Bat-channel.

And please don't forget to keep Sarah and Shannon in your thoughts and prayers.

-L

Thank YOU

Before I do anything else today, I need to thank some very special people who have been providing some much needed support these last few months:
To Peter, Melissa, Holly, Shannon, Gregg, (and any other MPIPers that I've forgotten to mention)- thank you for your constant supply of strength and knowledge. It has truly been a blessing finding you.
To Andrea, Jacki Doss and Jacki Donaldson, Stephanie, and my friends and family that read and comment regularly, as well as all you lurkers who are showing your support just by being here.

To my co-workers who have been checking in and picking up my slack.
And especially to:
Mandy, Carver, Kim, and of course, to Faith, Linda, and Katherine- my sisters, where would I be without you? You have been my rock, my means for finding something positive in all of this, even when I didn't want to. Thank you for giving your free time and energy and wisdom and hope. If I worked from now till forever, I don't see how I could possibly repay you all.
And Bobby- what can I say to you? My God, there are no words to express it. The only thing that even comes close is to say that you have no idea how wonderful you are and that you've made every moment of my life exponentially more amazing.

Okay, wow! That was all very deep and very cheesy, but very necessary. I sincerely thank you all.

-L

Sarah T.

There is little to say today except the obvious: Derek has posted an update and we are losing Sarah. I pray for a peaceful passing for her, free of pain and anxiety and all the unfair things she's had to go through of late. I wish I would've had a hundred more years of getting to know her, but I didn't, so I'm thankful for what I had.

Bobby and I talked at lunch after we read the post, and told each other what we mean to each other. I can only try to think that maybe she would be happy about that, that all of us are taking a little love from the journey.

I wish I had more words, better words, but I don't.

-L

Sarah's Blog

I know it's a little early for Christmas, butt......

the picture just makes me giggle!

A quick update, then I'll have to post more later. First, if you have tried to post a comment, you'll see that I'm now regulating them. Don't let that stop you from posting comments, though, because I need those words of advice and solice, and they get me through some tough times! Hold me!

It's just that, for one, I've gotten some spammy type comments this week in addition to some OTHER type comments that I'll address on another post. But trust me, they're interesting, and Jerry Springer-style scandalous. You'll want to check back in on these.

As far as the latest on the doc home front, the surgeon is now officially recommending surgery, and there is even some hope that this node isn't even melanoma! Which makes me, for one, EXTREMELY happy, even though at first I wouldn't let myself believe it for fear that it's too good to be true. Now, I'm jumping whole-heartily into the hopes that this is a reactive node, and not a melanoma node! Feel free to pray for that, too. So we're planning on taking the sucker out in June. This week, however, I have been talking to MDA and to another local dr's office (who comes highly recommended in the melanoma field) and we're getting some info as to what other experts suggest. With all this in mind, I am happy to report that I am feeling very, very positive. Very positive that I am getting opinions of experts and therefore will have the highest level of care. That's a big jab at Parkland, but nonetheless, just let me tell you, I feel good. And as soon as I hear anything else, you'll be the first to know!

In other news, I'm working with about 34 fifth graders who are antsy for summer and there's not a brain to share between them all!

-MM

White and pasty is HOT!

Saw this great video and just had to share it with all of you! This guy is my hero, by the way.

-MM

P.S. Did you know...
One person dies every hour from skin cancer.

You don't have to call me darlin', Darlin.

Allow me to go full-on hippy on you today.
The truth is, despite the malignant melanoma, I know what I'm supposed to know. I know that if I don't take the time to enjoy every moment, a whole lifetime can suddenly sneak by. I know that ultimately, death is nothing more than another experience in a long line of experiences. I know that being aware of every emotion I feel and being true to those are what keep me happy and make me feel sane. I know that seeing things exactly as they are is the means to daily peace. I know those things.

And yet somehow ugly malignant melanoma poopie head still has a knack for taking control of my thoughts, of my actual BEING, to the point where I feel that I don't even know who I am. Literally I think to myself sometimes, who am I? Because when it boils down to it, I'm not who I thought I was. I thought I was a fighter. I thought I was the type of person that could come out of this shining, with renewed vigor for life and a stronger conviction for... I don't know, something. I look back at those thoughts now and I just think about how naive they are. Yes, I am a fighter. But would I "fight"- risk my quality of life for a year for a 6% increase in chance of survival? No. Never. Am I coming out of this experience shining? Yes and no. No, I'm not the spokesperson for unprecedented optimism. And yet I don't think that's a bad thing. I think I actually see this for what it is, and acknowledge how painful it is not only to be diagnosed, but to see friends and family and people you love go through horrible experiences. Not even horrible like death (although a painful death is a given). But just horrible experiences like dealing with the fact that treatment hasn't worked or that the recurrence has spread through their body. Yet I do see that life is different for me and changed and, I admit, in some ways better. Not better like I thought it would be, but still, better. There isn't a time I talk on the phone or hug someone goodbye or even just talk to them that I don't think, "This could be the last time I do this." Even with cancer-free people I think this. Some may call this morbid, but I believe this is the reality of this life. We just never know what could happen, and I know this from experience. Lia. She was there one day, and it seemed the next she had moved in with her parents, then just like that she was gone. Like that. Two weeks. A whole life whisked away from me. A bright star I never got to see again. Who knows what could happen to me or anyone else just like that? In Tibet, there are stories of monks who pour the water out beside their bed before they go to sleep because they know the moment of death could come at any moment. Why plan on being thirsty when we have no idea when this life ends? It's an amusing thought and yet at the same time I think that's how we should all be living. Why not embrace this impermanence? Isn't that what living is about?
I think a while back I told you that I had dreamt of my dad. This had to be a year or so ago. But when I woke from that dream I had the most insanely peaceful and warm feeling. Bobby was laying beside me and I was trying to explain the feeling- a warmth I could not express, a peacefulness and an ease that would not allow for any anxiety or regret. Slowly, as I lay there, the feeling crept away, and the normal feelings of isolation and futility which we often don't even realize we have took over. I didn't think much of it. In the last few weeks I had the same experience again, but this time it wasn't with my dad, it was just some sort of shadow person. And the feeling was the same again- warmth, peace, calmness, comfort. The feeling that everything was truly going to be alright. The feeling that all the worrying I do and the guilt I feel are such complete wastes of precious time. When I tried to explain it to Bobby, what I finally said was, "It was like love. Like realizing for the first time what love feels like and what it feels like to be unconditionally loved." Warm and glowy and wonderful, like nothing can do you any harm. I even said to him, "that's why people that have near death experiences aren't afraid- because they have felt that feeling." This is part of what I know. I know that this type of feeling is available to me- that I can find this peace in myself if I embrace what I know. I know that if I don't take the time to enjoy every moment, a whole lifetime can suddenly sneak by. I know that ultimately, death is nothing more than another experience in a long line of experiences. I know that being aware of every emotion I feel and being true to those are what keep me happy and make me feel sane. I know that seeing things exactly as they are is the means to daily peace. And knowing all of this brings me closer to that feeling of ultimate love.

-L

Thank God it's Doomsday

Thank God for my job. I say that because lately it's been the only time I don't obsess about whether we'll do radiation or surgery. Not that it matters, really. Why am I so concerned about this? In a way it feels silly. I mean, it's not like I'm sitting around waiting to find out if I have cancer or not. The truth is, I know it's there. And I feel like we'll do whatever it takes right now to get rid of this, and then continue to be vigilant and fight it whenever (did I say whenever, I meant IF ever) it comes back. When I say it like that, it seems like no big deal. And yet it's eating up my thoughts, always there in the back of my mind, nagging me. Like a big, "What IF?" The crazy thing is I've never felt like the what-ifs in life were worth pondering. Why waste that energy? Now, it feels like it's all I do. What if..... That's different for me, as a person who has lived her life fairly fearlessly up until now. I've never been much for limiting any activity due to fear, including things that I probably should've been more afraid of. Maybe I've been in denial this whole time, acting like I'm immortal, acting like nothing can hurt me, diving into the moment despite the little fear that was there. It's worked, though! I've always felt very alive, and now, here I am, realizing just how human and fragile I can be. And it's overwhelming, of course. I try to just be myself and at the same time grasp these new feelings. Sometimes I'm a basketcase. I cry at the drop of a hat. I cry in the bathroom at work. I've had the same headache for 3, 4 weeks now- the type of headache I have to take Vicodin to get relief from. But, it's a process. I'm working through it. I'm a healer, I'm healing. I'm a freakin' machine. A healing machine.
Bobby and I had an argument yesterday- ok, more like a disagreement- about vacationing this summer, and I swear I thought I was losing my mind. We had essentially decided that plans we've been making all year are not going to happen. I felt like we don't even know what we'll be doing in the next 5 years, how many times we'll be fighting cancer, when I'll have to be in the hospital, when we'll have another chance to just go and do. I threw a fit. Do you know how long it's been since I pulled a "I'm locking myself in my room" fit? High school at least, maybe even jr. high. Good God. I really did come near to a break down. And I finally just let myself cry and lose it and feel sorry for myself, and after about an hour of that, I felt better. Like way better. I don't know why I fight being so human like that, but it's ridiculous. If I would just accept my feelings for what they are, it'd be a whole lot easier to move on from there. Just a bit of advice for the rest of you Wonder women out there.
Thank God for Gilda's Club. I come full out on Thursday and say I'm happy my cancer is back- o.k., not happy, but you know, relieved- and almost everyone in the room said they knew how I felt! Where else can you get that? I don't think I could even pay a room of people to be that convincing.
Thank God for all of you. I really don't know what I would've done if I hadn't had so many of you writing me, calling me, posting comments. Emails full of advice. Emails that brought tears to my eyes. Emails from complete strangers that offered their home to me and old me their own stories that are so similar to mine. Beautiful stories of hope. I sincerely can not thank all of you enough. I can't list all 109 of you right now, but just know that you're loved.

More scans have been ordered. I'll let you know what they say. Thank you again for all that y'all do.

-MM

Jack Sparrow is my co-pirate

I really have tried to blog the last few days, but I think I needed the time to process things. I'm here now, though with an update. I haven't even had a glass of wine, which is a good thing because I'm on my lunch break. Sacrificing good sandwich time for the betterment of bandwidth everywhere. Or something like that.

I saw the surgeon a few days ago. He is a young guy, but I have to say that despite his youth, he immediately impressed Bobby and me and he took all the time I needed (another Parkland no-no) to answer questions. He pulled out the Grant's Anatomy book to show Bobby and I where exactly this iliac node is, how close it is to the bowels and the aorta and such, and told us what kind of surgery this would be - "not one requiring a lot of finesse," as he put it, but a surgery that would require 3-5 days in the hospital and be very hard on my body, as I'm sure most surgeries are. "A questionable surgery when you consider the level of morbidity associated with it," I think he said. Essentially, he wants to confer with the radiologist and make sure this node can be totally and utterly fried crisp before we make a decision, but if it can be, then we'll take that route. The surgery, yes, would give us a chance to actually dissect the node, but, on the other hand, my leg is swollen enough already, and I'd like to lead as normal a life as possible (analap, for your acronym people out there). With consideration as to how the lymphadema would increase, he said that by removing this node and even just minimal lymph material surround it, he suspects my leg will double in size. So, let's just hope that we find out the radiation can be targeted and strong so that surgery is a definite out.

As far as emotionally, I don't really know what to say. I COULD say a lot of words, but none of them would make my mom proud, and just in case she reads this blog, I think I should hold off. I left the hospital yesterday saying, "I just want to be left alone," as in, I just want cancer to go away and never come back so I can have a normal life. But this isn't normal life, anymore, as I've been reminded. This is "The New Normal." So, I'm trying to just deal with that. In a way, I don't know why I'm so broken up about all this.

Uggh. None of this makes sense. Hopefully the next installment will. I'm gonna watch RENT now. That always helps. :)

-MM

Getting the most from Sunscreen

Interesting!
http://tinyurl.com/ywsysz

Could you come back in a few beers?

Well, I guess it's time for an update. Not sure if I'll get through everything I have to say, but here's a start nonetheless. I have an appointment with the surgeon on the 26th. The surgeon will be able to tell me whether this lymph node can be removed by surgery (hence the word surgeon) or if this will have to be handled with radiation. I've had a lot of people telling me that I need to get a 2nd opinion, and so I'm making an appointment at MDA. MDA, as in, you know, like the best cancer treatment center in the south. THE MDA. The problem, though, is this: how will I get treated at MDA? It's not like I'm going to be able to afford the out of network co-pays/deductibles/etc. Plus, how will stay there for 6 weeks when that's what type of radiation we're looking at? It's an outpatient treatment, I don't know anyone in Houston, and I don't make enough money to pay for that kind of hotel bill. It's a lot to think about. I guess I could work the corner. Some guys are really into scars.
For now, I guess we'll just take it one step at a time, and that means I'm only thinking of the appointment next week for now.

Bobby and I are both handling the news pretty well. Amazingly well, actually. We both keep saying, "Is it wierd what a relief it is to be fighting cancer again?" It's something only a cancer survivor can understand, I think. You just don't know until you've been there. It's the new abnormal, people. Sitting around waiting for it to return when every doc you see tells you it's most likely coming back will drive you up the walls. Knowing that it's here and it's really just one lymph node and that we can treat it, that's a relief. I know. I can't explain it.

Still loving the new oncologist. I called and left a message yesterday that I had a few questions, and I'll be darned if the buger didn't call me back today. I went through the whole list of what I've been wondering: am I a stage 4 now? is the cancer in my blood? how long would radiation take? what would surgery look like if we're able to do it? do fish have eyelids? what's your favorite Olive Garden entree? We weren't on the phone long, but he was very willing to answer all my questions and even told me to call him back tonight or tomorrow if I thought of more. This is just a whole new ballgame for me. The Parkland Oncologists talked to you with one hand on the doorknob and one foot out the door. It just feels like such a totally new level of care and I can't imagine getting anything better elsewhere, as false as I know that to be.

Anyway, that's about it. I'll go ahead and plug my TNT fundraiser that I'm doing for the Leukemia and Lymphoma Society in case anyone is interested in that. It's a great cause!
http://www.active.com/donate/tntntx/tntntxLLee

As for now, I feel pretty okay, surprisingly. I've been thinking a lot lately, especially since Mary's death, that we don't just don't know much about this little life. Does it begin at birth and end at death? Or are we just assuming that because we tend to think of ourselves as all-knowing? Just something that's been rolling around in my head.

Okay, well, I'm all over the place tonight. But I'll be back as soon as I know something.

-L

And now, for something completely different

Your thoughts and comments and well wishes have brought me to tears more than once this week. Thank you so much, all of you, for your support. It has made all the difference while I waited for the results. I have been so touched and moved by your comments, and given such hope and strength by your words.

And now, for something completely different.

No, this is not my PET scan. But yes, I had a lymph node light up on my scan that my doc said he's "99.9% sure is melanoma." A little unsure as of today if they can do surgery, because the lymph node that he was originally concerned about was just scar tissue, and the lymph node that lit up is actually "very deep in the pelvis." So, if they can't do surgery, they'll do radiation. Good news is that he feels very confident that radiation will eradicate it. Did I spell that right? Oh, well.

If anyone has any experience with this, please write me. I'm a little confused as to whether this melanoma is spreading or if they just missed a node. I should've asked all this to the doc, but you know how this is when you first hear the news.

Thanks again to all of you. And thank you Carver for all your help and all the information that you provide so regularly.

-L

It's probably nothing

I guess I'll get right to the point.

The good news is I met the new oncology doctor on Friday, and he's great. Great. The man is a genius, and he's very open to my opinion and the way I think things should be done, and what I want and need as a patient.

Bad news is he thinks he's found a lump in my stomach, a lymph node that he believes may be the size of a small egg. We're both pretty sure that it's scar tissue from earlier surgery, but just to be safe, I'm getting a PET scan and a CT scheduled.

So, not sure what's to say. I am scared, even though I know that I probably shouldn't be. I should be just resting in the fact that this lump is very, very near my surgery site and that the news will come back at as nothing. Nevertheless, it is nerve wracking. I guess because this is my first scare, it's to be expected. I'm mad at myself for not taking more comfort in the fact that the probability is in my favor.

Ugh. All these emotions, all over again. And anger. Anger that this is my life. Anger that I have to do the dr. appts every three months. Mad that I still break out in hives when I have to go there. Mad that everytime I go, something like this could happen. It's like at any point it could all go downhill. And then mad at myself for all those feelings, mad at myself for feeling sorry for myself when so many others have it so much worse. Mad that my friends are dying and I'm complaining about a lump.

My oncologist and I talked for a long time about this- like 45 minutes about melanoma and what having it means. It's an aggressive cancer. And, unlike some cancers, it almost always returns. Sure, the chance of it lowers after about 15 years of no recurrence, but the fact is, it's not one of those cancers you can be pretty sure is gone. So, there's that. Then there's the fact that the only treatment once interferon is over is IL-2, and that's definately not a sure thing, either. It's a help if you're a healthy person, like I am. If you're healthy, it's about a 1 in 5 chance. But if you can't handle the whole treatment, which, let's face it, is tough, then it's only about a 6% chance. Not to mention the potential damage it can do to your heart, liver, etc. I'm not sure I'd do IL-2 if the melanoma returned. In fact, I'm pretty sure I would not. So, as my oncologist said, "when it returns," he says to me, "we can take measures to delay death, but not significant measures. Once it's back, life expectancy is 9 months. A delay of a few months or a year is possible, but there's really nothing we can do to stop it." That's a real slap in the face even on a good day. But a day when you've just found a lump, it's enough to make you crazy. And, by the way, you can just call me Crazy from here on out. I'm going crazy with all this to think about.

I'm checking into a vaccine that has had great success overseas, but is not available here in the U.S. Not available to humans, that is, but to dogs. From what I hear, the shot is about $60g's and pretty effective (1 in 4). So it's not like my options totally suck. I mean, I guess, at least there's hope.

That's about it. I'm obviously a bit down. But I know I can count on good news soon. And, this is good for me anyhow, to deal with these things. Good for me, but not easy.

-L

The ultimate teacher

This blog will be a little scattered- a bit here and there- a tad all over the place. I'm just really letting my thoughts romp about. Think James Joyce and stream of consciousness.
______________________________________________________
There are two parts of me today. The first is the side that knows that Oscar is finally at peace.

Then there's the other side.
My therapist asked me on Saturday, "How do you feel now that it's over?" My first instinct is less than happy, bordering on what I can only reasonably describe as rage, but I just stuff it and I say the truth: I feel a sense of relief that he is finally out of pain. And now it is a matter of getting past the missing him. A matter of dealing with the fact that a good person that I genuinely cared about is gone. I think of my dad and how that dent will always be there. Getting past the missing them is the worst part. And that is what I can only assume takes a lifetime.

I guess I don't need to say that I wasn't as close to Oscar as many people in my group were. I keep feeling the need to justify why it hurt so bad to see him go. It's ridiculous, really- I think all of us from the group are asking ourselves why it hurt so bad. Of course, it is sad that such a wonderful person is gone, but we all seemed so emotionally tied to his death, when, really, we've all been surrounded by death before. But this one hit home. We're all exploring these emotions in us, thinking of Oscar, wondering what has been stirred in us.

It brings me to a quote I read this week: "Conflict comes when you seek consolation, forgetfullness, explanations, and illusions."

The other day we were talking about how the first stages of diagnosis always coincide with, "Why me?" And then one day, it just clicks, and the question instead becomes, "Why not me?" There is no consolation in figuring out why. We've done nothing to deserve it any more than any other person on the planet. And so the consolation comes from within, in the understanding that it happens. It happens to good people and to bad people, young and old, strong and weak. It just happens.

And such as it is with death, the ultimate teacher. It happens. The illusion that we here in the West like to live under is that death is some distant and foreign thing that's not going to happen to us. We're too young, too healthy, too (insert other adjective here). But death is a reality, and when we are slapped with it, how can I say this except: it rocks our world. That's where the "new normal" comes in. The new normal is life in the face of death. The elephant in the room that most cancer survivors are willing to acknowledge and everone else chooses to ignore is the reality of death. Once someone comes to grips with their own mortality, a lot of the dillusions about life and about ourselves are lost. There is pain with the prospect of our lack of existance, but at the same time the huge question begins to arise: Why do we pretend death's not going to happen to us?

Which brings me back to my therapist Saturday, who asked: why deal with death now? Why not wait until it is time to deal with it?

When, exactly, I asked him, is it time to deal with it?

When we're dying, he said.

Here's what I don't get: can we not learn to live life in the face of death? Does the prospect of it not give us greater insight into what we really want? And need? I have come to believe, as I have seen the face of death, that an acceptance of death leads to a more vivid life. Whether I can live that more vivid life, I am not sure yet. I am not so sure that I am capable of being that big of a person. But I know, none the less, that it is true.

There has been an outpouring among my Gilda's group since Oscar's passing, a string of emails to each other thanking the others for what they've provided and what is appreciated in each of them. It sort of blows my mind that a group of people can chose to go through something like this with each other, something that I've never really seen or experienced in my short life. And yet the group has pulled through it- has chosen to bond and meld together and be there for another human when all of our first instincts are to protect our own well-being. I, personally, had to fight with myself constantly- forcing myself to do what I really wanted to do when all the instincts were screaming to run in the opposite direction. This has much more to do with me and my history than it does to Oscar or my group- it's just how I've gotten by in rougher times. And I fight it still, even now. I can feel the tension inside me pleading not to get too close to people, not to allow myself to trust and not to get attached and not to put faith in them, that when it all goes down I won't be able to take the pain. But becoming bigger and better person sometimes means ignoring those instincts and learning to put yourself out there and love in spite of fear. It means that risks like this could pay off or not, but either way, a person comes out on the other side richer from the experience and proud of the involvement and wiser from the struggle. Isn't that what death teaches us, anyway?

This group has brought about a sort of renewal in me. I see, in the midst of this pain, such an amazing spirit of friendship that has astounded and overwhelmed me. And I see the individuals, too- people that I wouldn't even know or be friends with typically- I am in awe of their spirit, their strength, their faith, their tenacity, their character. In the last week, even saying the word "friendship" has literally brought tears to my eyes. It makes me cry the way people cry at weddings, who are bewildered by the beauty and stunned by the flow of emotions. And I can only assume it is because I simply cannot believe how I've been so blessed by this. So blessed to fall into this circle. I am at a loss to even describe it, but you just have to trust me how it feels to be so overcome by a sense that I am surrounded by a group of people that get me, people genuinely and deeply feel the same pain I am experiencing, people that would look me in the eye hours before death, people that are simply THERE- there when I just need to hear their voices or their stories, there when I am searching for a familiar face like a child lost among strangers, there to listen and to prod and to urge and to care.

I wanted to end this blog with some sort of conclusion about all this. But tonight I don't have it.
Maybe someday soon. Maybe it will become clear.

For now, though, I know one good thing. And in light of Oscar's death, I think that's a pretty big good thing to see.

-L

To See things as they really are

At the beginning of life after treatment, I began to wonder what I would talk about on my blog. I thought that cancer and treatment were over, and that I would be at a loss of how to continue my weekly musings on life.

What I realized later that I am more in need of this blog than ever before. The last few months have been a turning point for me, and my coping with cancer has just begun. Even better than that, though, I've found my way back to a point in my life when I saw things neither optimistically or pestimistically, but simply as they are, a beautiful dedication to embracing "what is." I feel I've begun walking a path where I can honestly and willfully see things in that truthful light and learn to not only accept it but actually embrace it for the reality that it is. It's a crazy thing, but it's liberating and nice to be comfortable enough to face truth and be able to deal with it.

A few weeks ago I was faced, for the first time, with what I can only guess would be the makings of a junior panic attack. Racing thoughts, inability to sleep, chest pains, that sort of thing. My doctor asked if I should increase my anti-depressant, and I thought of crawling into a hole. I was so disappointed that I wasn't able to handle this.
And then I thought of this very ancient, wise saying, "If you begin to understand what you are without trying to change it, then what you are undergoes a transformation."

I hope that this is true, because I realize what I am right now is a continuing fluxuation between grounded and then in the next moment hopelessly vulnerable. And I am working towards being okay with that. In doing that, I realize that there is no hope in trying to control all the delicacies of life, that every day new stresses, new tasks, new dilemmas are introduced that we will never be able to manage. Some are even in our control, and still will be unmanageable.

This is a relief to me, that I don't have to try to do that anymore. That I can go about my life, realizing the incessant ebb and flow of stress and eustress, and just take it as it comes.

-L

Let it be

I feel for some reason the need to post an update on Oscar. I'm not sure why- most of you don't even know him. Maybe this is for me, instead of you. Gah. You're so self centered.

Oscar is home, getting lots of meds to regulate his pain, symptoms, etc. He looks better than I've seen him in a while- more relaxed, more himself, more comfortable. And yet I'm sad. I'm sad that he's going. I should have taken more efforts to get to know him. I should not have been held back my shyness or embarassment. I should not have spent so much time at work when I could've been cultivating a friendship.
We all know this, I guess, that time is precious. That we never know what could happen to anyone at any point, and to cherish every moment. But it seems so clear to me tonight.

And so, I attempt not to hold back, and try to tell you what is keeping facing forward these days: The world is beautiful, and we can only be truly happy when we learn to accept and learn to love not only the joy in it, but the heartache.

And though I am so unsure of how to do that, I know that I simply must somehow learn.

-L

Spring Break '07- This Year, No Beach, No Banana Daquiris

I swear to you I've written at least 15 blogs in the last few days, and have erased every one of them. My committment to you, right now, is to publish this blog no matter how ugly or inappropriate or whatever it is.

Spring break this year started with an art memorial service for Lia. There were 8 of us there to honor Lia and to have our own memorial for her since we weren't informed of the formal one till days after it was too late. I wish I had a picture of Lia to post here, but I don't. I wish that you could see her, though. It would add so much to what you read about her. Anyway, there was that on Saturday last, and it sort of "set the tone" for the whole break. I had a pretty emotional reaction to it, especially for someone who doesn't have emotional responses in public. Andrea started the memorial by just telling us that anything was allowed- tears, words, laughter, hugs, silence. I started to cry almost immediately, and cried much of the time I was there. The group talked about Lia, then about the last 2 years, as 5 of our group of 25 have slowly melted away from us. Then we talked about our fears- about making more friends at Gilda's club, only to watch them die, too. Only to force us to face our mortality.

I guess I thought I was handling the whole thing better than I have been, but it became clear that day that I have barely handled it at all. I don't know what I've been doing, but I don't think I've been facing the pain. It has taken me all week to essentially come to grips with what is going on with me and what I am feeling. And what I am feeling is this: fear. Fear is a pretty foreign feeling to me- I've made my life out of stupid risks taken and living off the adrenaline from them. I'm the person that wiser people call wreckless and some call stupid, and am also the one that's pretty calm in most scary situations. A response from childhood or other hood, I guess- instant crisis management.
Up until a few weeks ago, if you asked me what I'm scared of, I would've said, "Disappointing my loved ones. But besides that, very little." Pain doesn't really scare me- physical, at least. I'm not scared of suffering, because I know for the most part that I can handle it. And I've learned much from losing things I loved and putting my life together afterward- to the point of feeling confident from such endeavors.
But things are different now. For one thing, I understand what a fear of death is. For me, it is attached to ego, as I am not so afraid of missing things as I am of the way life goes on without stopping to see that you are no longer a part of it. I assume this is nothing but a fear of essentially being forgotten. Or inconsequential. Of dying, and then, in essence, disappearing.
I also understand, I guess, the fragility of life now somehow, too. How it is here in our grasp, but, at the same time, it is not. It is mostly just beyond our grasp, because it is not something we can hold and protect, but merely something we are allowed to touch intermittenly and love and hopefully grasp and fully appreciate. And, after our time is up, it is gone from our sight.
That's enough to ponder for years, so I'll stop there. That's what's going on with me. I'm trying to use that, to understand what I've been taught from this, to make these days that are only mine a gift to myself. It is not always easy being so mindful, but it is important and a blessing, even when it hurts like it does today.

-Lori

Wake me up when February ends

I am glad February 2007 is gone, and I'm glad it's not coming back.

In February we lost Lia and Mary, and Oscar went in to ICU. Bobby and I went to see him last night, and he did look better. He said that they have finally gotten his pain to a manageable state, with a Morphine drip and regular injections of Dilaudid (?) as needed. It was good to see him with some color and able to chat for an hour or so without being in pain.

As for the future, we are all a little unsure. The tumor may continue growing now that they have taken him off of his chemo. Not sure how any of this is going to go. I'm scared, quite honestly, but trying to be real about my feelings and am hoping that as time goes on I will be able to deal with what is happening. For now, I'm going on instinct and what I know is the right thing to do.

-MM