Monday, October 15, 2007

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

Friday, September 14, 2007

My Story

In May 2005, months before I had turned 31 years old, I was working as a medical assistant in a not-for- profit clinic. I had moved to Dallas from San Diego the previous December to be with my dad who had terminal renal cell carcinoma. He past away in January and I decided to stay in Texas, near my family, for a while. I took the job at the clinic because I really loved the doctors that worked there- they really viewed their position as doctors as a means to serve society- and needed work, but mostly because I felt they were doing good things and I needed to be out of the house, keeping myself busy, not wallowing in grief.
The job did not offer insurance, but I did not plan on staying there long-term, so I wasn't worried about it. The doctors really took care of their nurses, though, and one day, while showing a nurse friend my pedicure, I asked a doc to take a look at a mole on my toe. The mole had been there my whole life, and had within the last year started to bleed. It sat square near the top of my smallest toe, but I was a runner, and ran about 25 miles a week, so I always assumed it was just irritated from that. Dr. Daya told me to go across the street to a dermatologist friend of his to have it removed. The derma took a look at it and said it was probably nothing to worry about, but needed to come off. It was perfectly symmetrical, had clear borders and normal color. I asked how much the lab fees would be because I was paying cash and not making great money. I also asked if it could be sent diagnostic lab I was familiar with, simply because I knew their prices. He said we would work it out but insisted on using a laboratory which specialized in derma cases. They gave me the number to an automated system and said the lab results would be ready in a week. I didn't think much of it.
A week later the doctor I was working for, Dr. Daya, called me into an exam room. I was a little freaked because the only reason I could conceive of him wanting to talk to me one-on-one was because I had done something wrong and was going to be in trouble. He was looking at the floor and very solemn, and told me he was sorry to be the one to tell me, but that I had cancer. "Nodular malignant melanoma," he said, "a very aggressive form of skin cancer." He said I needed to get immediate care or that I was in danger of dieing.

A month after the diagnosis, I finally found someone to who would see me even if I didn't have insurance. It took weeks of begging and searching and networking, but we finally found Dr. Beitch and Dr. Venkatessan. So, here's the short version:
May 2005- Diagnosed at Stage II.
June 2005- I went to an outpatient hospital and had the skin and some of the flesh around my toe removed, a skin graft taken from my thigh, and 3 lymph nodes from my groin to determine if the cancer had spread. Two weeks later the results came in that the borders around the skin left on my foot were positive for melanoma as well as 1 of the 3 lymph nodes. Now considered Stage IIIc.
July 2005- I had my smallest toe, part of my foot, and all 16 lymph nodes from my groin removed in outpatient surgery.
Outpatient surgery is no fun, especially if there is abdominal surgery involved. 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.
August 2005- I began high dose Interferon in a hospital. Interferon is a biological therapy/ immunotherapy for high risk patients. The treatment is a little dangerous and has pretty serious side effects so it required 5 day hospital stays for 4 weeks.
September 2005- The treatment lowers your ability to fight infection,
and in early Sept I discovered that my leg was red and tender, and I had 102 fever. I had contracted a staph infection and had to stay another 3 weeks in the hospital fighting that.
October 2005- I was sent home and Rxed low dose Interferon to be self administed by injection for the next 11 months. I would be very sick and unable to work. Off and on through the year I was sick, jaudiced, and had heart palpitations and trouble remaining ambulatory. Spent some of the time in a wheel chair.
October 2006- Finished the treatments, but the treatment had caused a condition similiar to chronic fatigue syndrome. Spent a full year and a half combating those symptoms.
June 2007- Routine PET scan showed an inflamed inguinal node which doctors were concerned was melanoma. Node was removed but no evidence of disease found.
Present- The majority of the symptoms from Interferon have subsided. Currently NED (no evidence of disease.)

There is no remission for melanoma, because there is no cure, and, essentially, it's going to come back. There isn't even really a treatment for it. Even Interferon, which I took for a year, is rarely Rxed anymore because the results are so iffy (only a 6%-20% chance of staving off disease) and the side effects are so horrendous. Interleukin 2 (or IL-2) is also a treatment option, but has about the same results and even worse on the side effect side. I prefer quality of life to doing a treatment like that again. According to the American Cancer Society and most of the doctors I've seen over the last 3 years (and there have been a lot!) my chance of living to 2010 ranges from around 27% to around 52% and my chance of living to 2015 ranges from around 22% to around 37%. But, to quote Fight Club, "On a long enough timeline, the survival rate for everyone drops to zero." In a way, I'm lucky because at least I'm not going to work some shit job that I hate in the hopes of one day, after retirement or something, enjoying life. I enjoy it now. I live as fully as I can. And it's a good life.
There are some very hopeful treatments for melanoma in clinical trials now, such as vaccines. But until some kind of effective treatment comes out, I am not getting regular scans. My oncologist kinda said, "What's the point? There's no treatment anyway." and I agree. If I get scans every 6 months, I'll be a nervous wreck until the next one. So, I'm taking it as it is.
I'm hopeful about the future. But more importantly, I love the present. It's all we have, anyway.

Thursday, September 13, 2007

How to eat fried schoolchildren

Sorry it's been so long since my last update. As you know now, the school year can be a bit hectic.

Having said that, I need to make sure that I make this clear too: your 2nd year teaching out weighs your first by about a million percent. I know, I know, mathematically that's not possible. But I'm telling you, I'm not exaggerating. I sleep at night, my room is organized, the kids actually get to enjoy the class because it's not so strained and new to me. So far, too, the goals I set for myself in the classroom have been attainable, and that's making the class better, too.

Not that there aren't "challenges" (the teacher word for problems) this year. I have a good group of really sweet kids, most of which still think members of the opposite sex are yucky, which I personally love. So cute to see them so young, and it makes my job SO much easier if we don't have love affairs going on. But never fear, by spring these guys will be jumping through their skin to see what it's like to kiss behind the gym after school. Ah, young love.



I've also had an opportunity to get to know my fellow teachers this year and- believe it or not- make FRIENDS. Remember those? The ones back before the chemo days, the ones you got to know at work and just vented to and were there to be vented to? Yes, those. Good God, what a difference it makes to be able feel comfortable enough in your own skin to just laugh and talk to someone like you used to. And to be able to hear other people in your same situation feeling the same way as you. These girls I've gotten to know have made my life a lot easier this year. Not to mention happy hour.



My one goal this year that I've failed miserably at is working out 3 days a week. I've pretty consistently worked out 2, and I always do it once, but this is it truly not good enough. Let's face it, people, I officially hate my body. And I'm an equal opportunity hater. I hate my legs, I hate my butt, I hate my back, but most of all I hate my front. I can't remember the last time I was so disgusted with myself. While I was on chemo, I always told myself that it was a temporary situation, and that I had no control over what was happening. But now, good Lord, it's been 2 years and I'm still struggling to get back into shape. Can I really blame this on chemo still? Me thinks not.

That's it for me. Tune in next week for the full on breakdown of every inch of my cottage cheesy bottom.

Tuesday, September 04, 2007

Today

Just really feel the need to tell you about my day today.

Started out, technically, last night at 1 a.m. when I still couldn't sleep, after laying there 2 hours, b/c I was thinking about all I needed to do this week. It's a short week, which is awesome, but also means I missing out on a full instructional day. So much to do!
Awake by 5:10 and at school by 6:00, and if you think teachers have it easy, just think about the line of teachers that were at the door trying to get in, trying to get a jump on the day. But everyone was laughing and smiling, giving each other a hard time- "What are you people doing here so early?"
But 7, I'd had breakfast, made copies, and was ready for the first lesson of the day- place value. If you haven't pulled teeth lately, just let me tell you, it's a lot like teaching place value. But with place value there's a lot more blood and screaming.
7:30 a.m.- time to serve breakfast, take roll, collect beginning of the school year paperwork (all 11 forms per student), distribute (again) the paperwork that wasn't filled in correctly or that hasn't come close to being turned in yet, take breakfast roll, put the remaining breakfast in a specifically marked bag, put the breakfast trash in a specific trash bag, say the pledges (including the new, deranged, Texas pledge), and get a math warm-up in the works. Then do the other attendance, and send in the completed forms, each one complete with it's own specific set of instructions- (green sheets in order of student id#, pink sheets in alphabetical order, blue sheets by date of birth, etc.). Then the principal does a random walk-thru ("Ms. Lee, why are you not in the midst of your place value instruction?") Give out table points to the quietest, most attentive table and individual points to those dedicated to their task and helping their neighbor without giving answers. Okay, time to teach now.
So, my new goal this year is to not do more than 15 minutes of instruction at a time, considering the average 11 year old brain is already stretched pretty thin by 15 minutes of instruction. In the midst of those 15 minutes, there are 2 interruptions- one to remind me to sell school t-shirts, and the other to let me know we need more family members signed up in the PTA. Back to instruction, and the kids are starting to get it. This year, a lot more hands-on, a lot more interactive instruction, a lot more "forming their own theories" about numbers. And it seems to be working. 15 minutes are up and so we play place value bingo for the prize of one gooey brain, for which the majority of the class is willing to give up a major organ. 2 games and they're still begging for more, and I can't believe my ears. Finally I have to give out homework, just to make sure everyone can apply this stuff on paper. Did I mention I have a kindergarten level kid in my class, for which I've had to modify and come up with lessons that look the same, but really are 4 grade levels lower? Also I have one student from South America who's parents refuse to put him in bi-lingual classes, so I've had to translate enough parts of the lesson so that he is learning English, but still able to fallow along. It seems, by the look of the homework, only about 10% (around 3) are really not getting it. This is about average. It's 9:30, and time to teach the other class math now. Start all that over.
It's 11:10, and time for PE. Two kids having a little anxiety about going, and I've got to figure out why. One is obviously being bullied, but I have no idea by who. This is the PI piece of my job, and I've got to get to the bottom of it quick. The other, I finally figure out, doesn't want to go because of headaches. The headaches are caused by vision problems, and the parents don't have the money for glasses. I know this because I saw the application for free lunch- six people in the household on an income of $300 a week. They make so little because probably illegal, and they make it under the table. These families come here so their kids can get a decent education, but the problem is the gangs fill these low income neighborhoods. My bully, she's being hasseled by older kids in her apartment complex, and they all wear red. We wonder why she bullies others- because she feels so powerless outside of the classroom. And my poor vision kid, he'll get the glasses he needs but it'll be 4 weeks easily. So, I'm off to the counselor's office, who is good. Last year, the counselor just tried to avoid all the paperwork, so she did nothing. At least she's gone. 45 minutes of paperwork to get some intervention on the bully. I pick up the paperwork for the glasses on the way back, and will have to get to it later. Time to pick up the kids. We go back to the classroom and read a few pages of the Ron Clark book. The kids eat it up, they really want to explore character development and they say please and thank you in the lunchroom, a phenomenon that does not go unnoticed. Same thing happened last year, and the lunch ladies love it! I have 2 minutes for a Lean Cuisine while I fill out the paperwork for low-cost glasses. Pick up the kids, and now back to the classroom for science, a lesson on the scientific method. You thought place value was bad. Luckily, we're doing a "swing bear pendulum" experiment that makes it come to life, and the reward of a gummy bear at the end of the lesson gets everybody working hard. More individual points and table points, and I'm amazed how hard these kids work for a little recognition. 15 minutes of recess as a reward, but the winners vote and tell me they'd rather eat lunch with me than go outside. :) I'm all warm inside, and feel blessed by such good kids being in my life. The bell rings, and the real work begins, getting ready for tomorrow and the rest of the week. 3 teachers come in and cry between 3 and 5, because their class is so low and the pressure is so high. I remember this from last year- good grief, I had no idea how to deal. This year, I'm much more able to roll with the punches. Still a struggle, though. Copies and laminating for the activities this week, but the copier shuts down mid copy. Third time since school started that this has happened. I'm amazed that the teachers never complain. A grumble or 2, but no serious bitching. I go down and try to help destress another new teacher, and we laugh it off with stories from the day. It's 8 o'clock, and I know my hard work tonight will allow me to leave by 5 probably the rest of the week. I should go work out, but need to be able to sleep. I gotta start leaving earlier, but I love the satisfaction I'm getting from my job and from the kids. But I miss Bobby, too. It's all a toss-up, you try to balance. I get a text message on the way home, a kid from last year who tells me middle school is "fly." I'm happy that last year I lasted, even though it almost killed me. And then I get to see Bobby, the best part of my day.
Time for bed!

Tuesday, August 14, 2007

I got tagged, so here's 8 Random Facts about me

Well, I was tagged for 8 random facts. And in case you don't know....

Here's how it works: Each player starts with eight random facts/habits about themselves. People who are tagged need to write their own blog about their eight things and post these rules. At the end of your blog, you need to choose eight people to get tagged and list their names. Don't forget to leave them a comment telling them they're tagged, and to read your blog.

*My added rule- you have to post some random pics, too.

So, in no particular order:
1. I have conversations in my sleep and then giggle hysterically.
2. Two of the people I grew up thinking were my grandparents were never related to me, and no one knows who the real ones are. I know. Wierd.
3. Before college, I'd never lived anywhere for more than 3 years.
4. I was a virgin until my wedding night. You can get up off the floor now.
5. I always thought I'd grow up to be a famous writer.
6. People tell me that my dog and I act just alike.
7. Until my dad died 2 years ago, I had never really been close to anyone who died.
8. I hate painting now because I did it all through chemotherapy.

-MM

Friday, August 03, 2007

Hodgepodge, I suppose

Since it's been so long since my last post, I have quite a bit to post on. So today's title is pretty appropriate for the theme.

Woo! It's been hard to get into writing on this blog this summer- I've just been so into the whole vacation thing, I think I took a vacation from everything!

So, I'm kinda all over the place. Just get ready- my writing is probably gonna be pitiful.
School is quickly approaching and though I'm excited about my second year of teaching, I have to say I could use another 9 months of vacation. This is pretty different from the "old me," the workaholic who couldn't get enough on her plate. I look back now and I'm not sure what that stemmed from, except that I've always loved being busy and challenged, and when a job stopped fulfilling either one of those, I'd either go out and get an additional one or replace the first one altogether, although I really did more of the former than the latter, which explains why I never had just one job. Teaching, though, is definately more than one job, and it has been successful in keeping me way too busy and challenged to the point of pulling my own hair out. On a single day, a teacher is not just a teacher, but a nurse, a counselor, a mother, a tutor, a liasion, and a confidant- not to mention the administrative duties of the job, which, let me just say, at least equal the task of hearding blindfolded cats on rollerskates through Disneyland.

I've spent quite a bit of time this summer getting some of my lesson plans, etc., in working order and ready for the upcoming year. But mostly, I've spent time just getting my head right. My head and my body. I have spent every moment since surgery really focusing on whatever it's gonna take to get me as close as to pre-cancer/pre-Interferon me as I possibly can. And, I'll tell you, I'm pretty proud of how far I've gotten. After a total renovation of my diet since June and the ability to sleep 10 hours a night, I've got more energy than I've had since August 2005. Another thing I think that's also helped has been laying off of running and giving other stuff a chance. Running has always been a passion, but let's face it- it's rough on the old lymphadema. Instead, I've been taking boxing, "I'm-gonna-knock-you out-cause-mama-said-knock-you-out" style, and though I'm no where near ready for my first fight, I'm having a blast doing it and really feeling the benefits, too. I also bought a bike today, and I'm looking forward to really dedicating myself to that for a while, seeing where that goes. They're not running, but they are a fun alternative for now, and as I get in better shape, I'm sure I can pick up running slowly and be able to enjoy that again. And the ability to do more physically is really doing great things for my mental state, too. It's amazing what physical fatigue will do to your mental state. Having friends who look at you like Mandy is looking at me in this photo will also mess with your head. ----------->

San Diego definately helped, too. Wow, to be back in my old spot and leading my old life for a week or so- that really gives you a glimpse at how much things have changed. I love my life in Dallas, but it's been built around healing, predominantly. It's been good, and given me a chance to focus on my health. It's also given me my life with Bobby, a great place to live, stability, and my career, which I never coulda gotten so easily in San Diego. But it also gave me a glimpse at the parts of that old life that I miss and want back, and I've been working on that, too. Just having a social life and girlfriends and having a great time being irresponsible and drinking too much every once in a while- stuff that I've put on the back burner because I was too sick to leave the house or too tired after a long day of work- I'm making it a point to get to a place where they are just a normal everyday part of my life again. Because, don't we all know it- life is too damn short not to do that stuff. It's amazing the clarity that comes with psychotic jealousy, isn't it?
So, we'll see. I'm making it a serious point to put my real life first, and that means I've got to remember those priorities about making each day worth remembering.
Bobby came down the last 4 days of the trip, and we had an awesome time in Vegas. I can't wait to post the pictures!

This post seems a little all over the place... and random... but kinda fun to get you caught up on all things going on. Coming soon- photos from Vegas, baby! The mecca!

-MM

p.s. Do you know what it's like to fall in the mud and get kicked... in the head... with an iron boot? Of course you don't, no one does. It never happens. It's a dumb question... skip it.

Tuesday, July 24, 2007

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..."

Saturday, July 21, 2007

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)


Friday, July 13, 2007

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

Sunday, July 01, 2007

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

Friday, June 15, 2007

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

Tuesday, June 12, 2007

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

Saturday, June 09, 2007

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

Sunday, June 03, 2007

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

Sunday, May 27, 2007

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

Wednesday, May 23, 2007

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

Tuesday, May 22, 2007

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

Tuesday, May 15, 2007

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.

Monday, May 14, 2007

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

Monday, May 07, 2007

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

Friday, April 27, 2007

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

i2y

I'm Too Young For This!