I'm ready for my close up

Let me first say that I'd love to post these funny pics I've found for y'all, but Blogger is having some trouble getting those to upload. Ah, well.

So in case you haven't heard, Miss M has been on the news. That's right, kids, my first taste of fame. It was a good piece, though, and I think it really pushed the melanoma/insurance awareness thing.

In case you haven't seen it, here's the link. There's an article and a video (yeah, those are my hands) and, in case you haven't heard- we're not engaged. Not sure where they got that.

As for little ol' me, I'm good. I'm dealing with the "living in limbo" thing, and I have to admit, most days I do feel lucky and happy to be who I am and where I am.

Also, especially after seeing the video of the news cast last night, I am appreicative of those around me- Bobby and my MPIP folks and my friends- who have made all of this bearable and, even in the craziest times, made the time fly.

I love you guys.

Ah, geez. Somebody get me a tissue.

-MM

Let me just warn you now...

.... this is not a happy post. And a long one, at that.

I've recently thought of what to do with this blog, and considered allowing it to morph along with me, become more of a "here's me and my new life after cancer" sort of thing. Something about that felt very wrong, though, and I think I've finally come to the reason why in my long rant, which begins, uh, right about now.

I started this blog tonight as a way to vent. I hate venting in a lot of ways, because I'm not a big complainer unless I believe it will lead to a new means to a better end. In many ways, however, ranting here feels very appropriate here because for a long, long time, (which, in reality, was only a year or so,) I came to this blog to talk about the things that rolled around in my brain on those never-ending days that I lay on the couch hating chemo. Back then, I used this blog as a way to reach people that I loved that were not near me, a way to ask friends that had disappeared to read and understand and help, a way to assure the ones I love that everything is fine and I'm keeping my chin up.

I can't seem to let go of that, yet. Perhaps it's because, oddly enough, I can't seem to let go of melanoma- and that means, I guess, that I'm holding on to that tumultuous relationship I've had with melanoma these last couple of years. We have been so on-again-off-again. I feel maybe this is a point in our relationship when we should explore other options. You know, spend some time apart and decide what it is we really want. Get to know ourselves again. Spend more time with our friends. Takes some time off.
It's me, of course, not melanoma. And I know that we'll always be friends.

It appears in the midst of the last few months of life as a cancer survivor that I have exited onto that ramp in cancerland when I am supposed to be moving on with my life. I am in the stage where active treatment has ended, and I crave a way to be progressively battling the beast, as it is so affectionately called. Many people during this time become depressed. And then you move on.

I, however, am stuck. I'm having trouble moving on. Perhaps this is because for the first time in a long time, I'm allowing myself to really process the last year or so. I think of the surgeries, the tubes, the weeks in the hospital, the nurses, the minor procedures, the looks I saw on people's faces, the weeks in the hospital. And, of course, the Interferon. Talk about a rocky relationship.

I can't get it out of my head. I think about how I felt on the chemo all the time. Let me start with the basic fact that it's difficult to describe chemo to someone else. It's not just that you begin to like vomitting because it sends a wave of relief. And it's not what you think it is before you go through it. It's not just the nausea and sickness. It's not yuckiness. It's a level of illness and exhaustion that you cannot describe. It's being so sick and so tired that you can't even watch television. That's not an exaggeration. I'm not talking trying to pass the MCAT, people. I'm saying you're too tired to concentrate on a sitcom for 7 minutes. Even Family Guy. Who's too tired for Family Guy?

At the time, I couldn't really have explained it, but, looking back, now it is vivid and way more easy to detail. I craved Vicodin all the time because it gave me a brief hour or so of not feeling that overwhelming achiness and fatigue just before I fell asleep. An hour. That was what I got out of it- an hour of feeling normal. And it was always on my mind, "Maybe if I could take a Vicodin, I'd be able to walk out to the car without feeling this way and we could leave the house...."

Food was just a chore, a complete burden, because you eat simply to have the mildest change in energy level, and yet it was like constantly being forced to eat clay. Everything was awful- the texture, the flavor, the incessant need to swallow and then mentally force yourself to think of other things- anything: the shape of a spoon, the ceiling tiles, the cold feel of the table- in order to keep it down. More mentally challenging than anything I've ever had to do before. The GRE has nothing on this.

It's been a few months since then. I've immersed (or is it emmersed?) myself in a new job, gotten lots of hair back, begun to lose a teeny tiny bit of that chemo weight, and am learning all about life after cancer.

I've begun to read MPIP everyday again, because it has become obvious that there is no life after cancer, there is only life with cancer, and life waiting for more cancer. How negative is this to say? Tremendously, tremendously negative. And apsolutely true. The thought of it is always there- when is my next recurrence? How long will I live when it comes back?

A lot of times I think this is an overreaction on my part. Maybe I'll be okay. Maybe it will never come back. Lots of people live 20, 30 years without a recurrence.
But then there's the reminders all over my body: the new bumps around my surgery site. The constantly changing moles around my primary. The spots I find on every inch of me. The new reason to go to the dermatologist every flippin' month. The constant tests and the constant waiting and the constant weight of bad news.

Augh. This is so negative, I can barely stand to write the words. And yet, I feel like maybe this is what has been inside of me all along. This is what I've wanted to say, but I haven't said in order to spare the feelings of those I love.

When I say these things out loud, it's always the same. The people I love want me to believe that everything will turn out okay. And, in a lot of ways, I have so much to be thankful for. In ALL ways, I have a lot to be thankful for. I'm NED. I'm alive. I don't have bone mets or kidney mets or brain mets or liver mets or constant tumors appearing that I can feel through my skin.

And yet I sulk. I cry in the shower. I hate that I'm waiting around for bad news. I hate scheduling the doctor appointments and that look on their faces when they talk about "when this comes back." When? What happened to if? I hate how fixated and wrapped up in my own life I have become. Work is such a relief- an amazing chance to think and worry about someone else for a while.

Someone posted on the MPIP bulletin board a few weeks ago, and it was so right on the money for how I feel, I had to save a copy of it. Here's a pasty job for you, so you can read what I've been thinking, written by a man named Jimmie, who's obviously been channeling through me.

Posted by Jimmie on October 24, 2006 at 13:37:57:

It's been a crazy few years- off and on Interferon and Interl-2. Finally, after several years of fighting this, my doctor said my NED. I went back to work to carry on with my life.

Only been back a few weeks, and work's good, but the cancer is always there in the back of my head, telling me not to have too much faith.l. I don't know, I'm not sure what to do. Moving on doesn't seem as easier as I thought it would be. I guess this is the "new normal" everyone talks about.

Some days I wish the scans would just come back positive so I'd know what to expect. Ain't that the craziest thing you ever heard?

But, I'm still so tired, even after finishing treatment 6 months ago.

My wife is a little unsure of how to take me these days- I guess she thinks I should be happy.
Come to think of it, I think I should be, too. What the heck is wrong with me?

You all sure seem like good folks. I'd sure appreciate any help you could offer.

-Jimmie

I appreciate Jimmie for what he said, for his honesty, and for making all of this easier for me to say. It was a relief to read it, and to say to Bobby, "Hey, read this" so that he and I both could see that maybe I'm not as crazy as I sound. And it added an air of distance, because if someone else posted it, and Bobby said, "What a freak...", then we could've just moved on without talking about those being my feelings, too.

Maybe if Jimmy hadn't said it first, then I (cowardly) never would have posted this blog. Lots of people offered Jimmie advice, and a big part of it was, "You're depressed, dude." It's an eye-opener for me. Maybe I need to do more about these feelings.

But, for now, they're here, and that helps.

And I think, today, this is all I can do.


Let's be safe out there, people.

-LL

I'm Miss Melanoma.... and my prices are INSANE!!!

Snobby Bobby, the amazing counterpart to Miss Melanoma, has posted a blog of late, and I feel a response is in order. He says teachers are insane.

Okay, yes. Yes, teachers are insane. They work insane hours, cry over their job, think about the kids 24/7, seemingly never have a day off, miss out on fun events and sleep and going out and seeing friends because they're trying to figure out ways to reach the kids and fill that notorious achievement gap between the classroom and the test. And by the test I mean THE TEST (as in TAKS).

My job takes a lot out of me, and it takes a lot of me. By that I mean that when I'm working, it's all I'm doing, and I do it 100%. I may not be the best teacher in the world (yet), but you can't say I don't put every bit of me into it.

That being said, keep in mind that work has always been my way of dealing with things. When life is stressful outside of work, I go to work to have something to occupy my hands and my mind so I can think through life with a more positive outlook. I guess it's like working out, but instead of just physical exercise, work requires both the mind and the body. It's always been this way, and I like it this way. There are negatives to it, of course, and one of them was very obvious after my diagnosis: sometimes you just CAN'T work, and when that happens, what do you have to fall back on as a means of dealing with stress?

Or, like I experienced earlier this year: what do you do when your job IS the stress? How do you use work as a stress relief when your work is the cause of it?

I tell people that having melanoma is just a part of who I am.

And being a teacher is part of who I am, too.

The other parts of me are less obvious, but they're still there- like being an animal lover, a big fan of music of all types, a runner (who hasn't run in over a year), a semi-artist, a partner, an activist, a writer, a dreamer, and a daughter.

Teaching, just like being a cancer survivor, is not the way I'd like to define myself, but it is a big part of me. What we have overcome often becomes, in the process, a clearer picture of who we are.
And it has been a challenge balancing work with a real relationship, which, at 31, I'm experiencing for the first time in my life. I love what I do, but, more importantly, I love this life that I've been given, and I don't want to waste another Saturday afternoon doing lesson plans when I could be enjoying the sunshine (with UV protection, of course). And I don't ever want to be in a hospital bed again, thinking of "all of those little lost moments we don't even realize are passing us by."

It's a tough balance, but worth it, and good to think about, I think.

So, for now, I'm heading home for some quality time with the fam.

Have a great weekend.

-MM

Good Vibes

This post is to send good vibes out to the people today who can really use it:

To Mandy, I'm sending out the best possible vibes to get through this hump your trying to get over.

To Peter, I'm hoping that, through this terrible loss, there is some value we cannot yet see.

To Carver, I'm sending you all the support and love that you offer all of your friends.

To Helen, I'm melting those brain mets every day with my positive thoughts.

To Sarah, I'm wishing that euphoria would last forever for you.

And to the friends and family of Kim, I'm sending peace.

-L

In Memory

This will just be a short post.

When someone dies, it's so cliche, but someone always says, They were such a bright light. They never complained. They were so strong. Or, even worse, They will live on forever.

For some reason, this always irritated me. Now, after experiencing the death of family and friends firsthand, I understand. When you know someone is dieing, suddenly it becomes so clear how much of them you've missed over the time you've known them.

I didn't know Kim well.

We emailed each other from time to time, and she always had positive things to say. She gave me good advice whenever I was in the midst of the worst part of my treatment, and she sent me jokes when I didn't think I could possible laugh.

And then I read how upbeat and happy she was after coming home from the hospital, all laughs and smiles days before her death.

I can't explain how hurt I am that cancer wipes out such amazing souls.

But, the truth is: she is out of pain. She was a wonderful soul, a bright light, a woman who was a model of strength who never complained.

And, she'll live on forever.

-L
http://kimfromiowa.blogspot.com/

10 Things I hate about... well, everything

At first glance it might seem like a negative title, but in reality, let's face it, shit happens. I try not to use too much profanity on this site, but I think today calls for it.

I've been busy. Busy, actually, is an understatement, and I know that a lot of that business comes from me just having something else to think about besides cancer for a change. The whole time I was doing chemo I asked myself how much it really sucked and how other people went through the same treatment so much more gracefully. Was I faking it? The answer, now, looking back, was no, I wasn't faking it. I was just on a lot of drugs and under a lot of influences and didn't feel like myself.

Now I wonder why I'm so lucky. I have all these wonderful people around me that have gone through the same thing, and now they're not okay. Now they're dealing with more stuff, and getting more treatment, and having more tumors removed.

And it's just not fair.

And I guess, of course, no one ever said it would be... but I'm having a tough time thinking this is okay, when it's really not. I'm really pretty pissed that this could be happening to my friends- to people who have been positive and wonderful for me, and who deserve so much better.

That's really all I know how to say right now...

I don't even think retail therapy is going to help this one.

-MM

Am I ok? Part Deux

Hello people of the world-

I have just a quick minute to get this blog posted and then get back to the daily grind. I'm getting lots of encouraging emails and comments about being off Interferon, and I appreciate them all. You all have been so wonderful. I can't tell you what it's meant to me to have you accompany me through this last year.

School is awesome. I've always kinda been a workaholic, and this profession seems to fit perfectly with that. I'm hoping that later in the year maybe it won't be so hectic, but experienced teachers are telling me that's pretty much a pipe dream- that the first year is basically all catch-up. I feel good, though, and confident that it will be a success. It feels so good to be a productive member of society again! And the IRS is loving it, too.

As far as being off Interferon, I can't even describe the feeling. My skin is getting soft again, not flaking off in scales, and almost back to normal. My hair is growing in thick, my gums have stopped bleeding, the nausea is gone, and I mean really gone, the depression is slowly lifting, and I can stay awake more than 2 or 3 hours at a time. I'm excited to be normal again. My taste buds are back, and I'm eating veggies at every meal again, which is not only wonderful, but also delicious! The fatigue isn't totally gone- I'm still pretty wiped out by 2 or so every day, but the good news is vitamins and food aren't making me sick anymore, so that has helped lots as far as the energy level goes. I've read and heard that sometimes it takes up to a couple of years to get over the fatigue, but this is totally liveable. And, to be honest with you, I've got no complaints.

I can't say enough times how awesome it feels to be back. It feels so awesome to be myself again. I can't believe that year of Interferon is over sometimes, that it's gone and I don't have to do it again. There at the end, just a few days before I quit, it had become almost unbearable. Fatigue like I'd never felt before, constant diarrhea, jaundicy eyes and complexion, and pain. Pain that became close to unbearable, not because it was so bad, but just because it never went away. Bobby and I both knew that I'd be hospitalized before the month was up, but neither one of us would say it. We just kept saying, It will be over soon. Inside, though, I'd all but given up. I consider myself a survivor, someone who can handle her share of the load, but 13 months of Interferon had been too much.

Know what doctors say when you give them this list of symptoms? They say, "Hmmm. Well..... um, are you depressed? Sometimes depression will make you feel that way." Depression causes jaundice? Who knew.

And then, like a quiet whisper, it was just over. No big to-do. No huge relief from family and friends. I just kinda gradually stopped the treatment and tried to start feeling better. Somewhere in there was the no-more chemo party, where I had a lot of fun, but a lot was going on that weekend- stress and weddings and showers and jobs, etc. I honestly can't speak for anyone else, and at that point, I was so tired, I was just pushing through for the sake of doing so. Really the party was in my head a few weeks later, when, for the first time in too long, I had my life back.

Work gives me a lot of time to be doing stuff while I'm thinking, and it feels good to work things out that way. Looking back, it's crazy to think how sick I was and how long I felt that way. A year of it is a long time, and I don't blame anyone who gets down after a while. What a tough choice it must be to decide to go back on it after having lived through it once. I really don't know what my decision would be if it came down to that again. Today, I'd say no way. I'd say it's better to have that year to really live. But hey, that's just me, today. Tomorrow I could be gung-ho for it. Kicking cancer ass!

I've been thinking about my stepmom a lot lately, I guess with the holidays coming up and all. Thanksgiving was always the best time of the year with my dad. I'm guessing I'm gonna miss that again this year. Oh well. Bobby says we might do something fun, like a little short cruise (not Tom), which would be awesome. Maybe it'd be good to do something new, something to break old habits, which obviously die hard. I have a picture of my Dad in my desk drawer at work, and I look at him every day and say hi. Sometimes I wonder how long this will go on, how many years I'm going to miss him like this. I hope that where ever he is, he has a great holiday this year, just like the good old days.

Not sure what the bunny fixation is today, but I got a couple of good laughs out of them, and that never hurts, right? Hope you did, too.

I'll write more regularly, I promise. Don't be mad...

-Lori

Am I ok?

I guess this question is understandable- I've all but disappeared off the face of the earth. Most people have given up on me and started going straight to Bobby to check and see if I'm still alive.

I'm alive.

I'm alive as I've ever been, and I'm okay.

This post has to be short because I am at work. Yes, work. I have a job. I'm off chemo. And life is good.

Tired? Tired after starting work less than a week after chemo? Yeah, tired. I'm really tired. I'm tired, I'm working 12 hour days, it's a crazy job, and, friends, I don't think I've ever in my life been happier than I am at the end of an exhausting day.

I'll give you all the details soon, but, for now, know that if I haven't written or called, it's not because I don't love or appreciate you, but just that I'm so wrapped up in something besides chemo, and I'm exhausting every minute of my life of freedom for now.

I'll be in touch soon, and I think of you all several times a day.

Take care,

Miss M

You know how cool? Sofa king Cool!

Here's the truth: since mid july, the Interferon has been kicking my ass.
I've started 4 or 5 times to blog about it, but I feel like a whiner, so I always end up deleting the post.
Instead, I'm working on a short story that might be a little less whiney and a little more productive. Sort of a day-in-the-life thing.

Until then, I'm going to be a recluse.

That's all I have to say about that.

-MissM

P.s. I'm down to 6 vials. Again.

I Pity the Fool!

Hey homies,
I found this great article, and it rang so true to me, I thought some of you might enjoy it, too. It's short, too, for you remedial readers and slowskies out there.

Word to your mama!
-L


What Happens After the “Cure”

• July 16, 2006
• 5:15 pm

At the time of diagnosis, often times a patient becomes very emotional, or very detached (of course there are degrees in between). Many people tend to take their diagnosis at face value, and place their treatment in the hands of a doctor. They are often too emotional to take charge.

The detached will start forming a game plan. They research, ask questions, and become an active participant in their treatment. They also tend to unconsciously put emotions on the back burner. They are so incredibly busy “staging the battle” that the thought of dealing with emotions doesn’t even cross their mind.

As part of “staging the battle”, many patients also rally the troops. Patients find themselves surrounded with family and friends. All of them relaying stories about their great aunt, Uncle

Joe, and their cousin’s boyfriend who went through the same thing and were just fine. Sometimes, the opposite is true, and people will shy away because they do not know what to say or how to act. This is a very precarious time, because the way you respond to your family and friends is the way they will respond back to you when you need them the most.

It seems that in the diagnosis stage of an illness, there is a lot of confusion. It’s a little like putting together a puzzle. A puzzle that is written in medical terms, and the lay person does not understand it. Everyone is hearing terminology that they have never heard before, and nothing seems to make sense. Once those pieces of the puzzle start fitting together, there comes a sense of acceptance.

The treatment phase of an illness is the busiest time. This is when the patient’s support team

becomes invaluable. The patient has doctor visits, possible surgeries, children to take care of, meals to cook, and medications to take that may not allow them to do these things. New issues arise such as how much to tell the family. The consequences of not telling them the whole truth may create new problems later on. Patients may feel the need to force themselves to do too much, which not only delays the healing process, but could also give off the impression that they are doing much better than they actually are.

Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them. As a result, the patient might find themselves telling people less and less of what is happening, causing the people around them to back away.
For some, treatment may go on for years, and dealing with it is a delicate balancing act.

After the so called “cure,” the “troops” start backing away, going back to their regular lives. All the emotions the patient unconsciously left on the back burner during treatment are now coming out ten fold. This is the point where the patient discovers the toll that the illness has taken on their life and their family.

Before and during a treatment, the patient has so many people by their side - doctors, family, friends.. but afterwards, they can be left feeling isolated and alone. Add that to the fact that the so called “cure” might not be, and you have a recipe for major depression. Life does not necessarily resume. There may still be medical issues that require treatment, and there is always the possibility of failure.

Dealing with an illness of any kind requires a multi-faceted approach. The patient must be treated as a whole including mind, body, and spirit.

Stacy
Executive Director of TMJ Friends

It's a Party, It's No Mo Chemo, and it's coming soon! You have officially been invited!

Check you email for evites and be sure to RSVP!
(this guy already did, and look how happy he is)

Snootch to the Bootches

As all of you know, a lot of things are about to change for me. I'll be off Interferon soon, I'm going back to work, and I'll be able to take part in many, many things that I've missed doing over the last year, like driving, running, and just being able to get out of the house without throwing up in public parking lots. To say I'm excited is an incredible understatement. I'm elated.

Surprisingly, I got another big change today. But before I get into the logistics of this event, let me give you a bit of background info.

In 2003, my dad was diagnosed with kidney cancer- renal cell carcinoma. It's a particularly aggressive and fast-moving form of cancer, and by the time he found out about it, it was a football-sized tumor that spanned from his kidney to his stomach and attached to the vena cava. Needless to say, it was all down hill from there, and he passed away January 6th, 2004.
I wasn't there for my dad the way I should've been. I was in California, and though we talked twice a week, I know it hurt him that I didn't come to Texas more often to spend time with him before his death. I spent a few weeks with him in April, and then I got the call in late November that he needed me. I had asked my dad many times if he wanted me to move home, but he always said, "No, sugar. I'm alright. You have your life there and that's what I want." I look back now and know that he didn't want to worry me, and I wish I'd been smarter about the whole thing. He was being selfless, like he always was, and I should've done the same for him.
I was by his side the few weeks before his death, and I learned so much about myself and about life and death in general, just by being there through that. He was a wonderful, strong man, and he deserved a much better death. But this is sometimes how life works: bad things happen to good people, it hurts, and we get through it and move on. In the end, my dad told me good-bye and assured me that death was what he wanted at that time.
It was, of course, difficult for all of us. My dad was the one who primarily raised me, and he and my stepmother were very happy while they were together. Up until that point, they were the only family I'd really ever known, and it felt real and genuine and wonderful to be a part of one, a real family. My stepmom has a very large family, fourteen siblings in all, and with all of them there during the ordeal, there was a great deal of support, which made it easier for everyone.

I re-evaluated a lot about my life at that time, and, after going back to San Diego, I decided I wanted to be closer to family. I moved to Dallas that same week.

Fast forward to May, Mother's Day. I went to see my stepmom and take her out for Mother's Day. She was having an incredibly tough time dealing with my dad's death.
I called the week after to check on her, and there was no answer. I left a message. Two days later, I find out about the melanoma. My doctor tells me that this is an extremely large nodular tumor, and that I need to get treatment soon, and my life is seriously in jeopardy.

I don't want to tell my stepmom this on the phone, and so I continue leaving messages like nothing is wrong. I write letters. I drive to her house to surprise her. She never calls or writes, and I never see her. I write my aunts and my stepsister and ask why she isn't speaking to me. I call and write more letters. I have no responses. It has been over a year since she has spoken to me and I assumed, finally, that she no longer wants me as a part of her family.

And then, today, I thought, Okay, one last try. She answered the phone.

I don't know why people act the way they act when they find out the people they love have cancer.

My relationship with my stepmom has changed because of my Dad's cancer and death. She can't see me anymore.
And someone that I trusted and loved and relied on and needed totally freaked out, came down on me, and let me down when she found out that I had cancer.

None of us react the way we think we will in these situations. Even now, with fellow survivors, I am surprised by my reactions.

I should've been there for my dad when he had cancer, but I didn't think I could do it. And I didn't want to. That's the honest truth. I didn't want to watch the first man I ever loved die.
In the end, I stalled when I shouldn't have. My friend KelMac told me to go to him, whether I wanted to or not. So I did. I'm so glad she did that.

I don't know the point of this blog. I guess I just want to say something that we all know, and that is this: that this life and death we're given, I don't know how many chances we get with it, and it's not easy. But we all just need to realize that we need to be a little more careful with it, I think.
We can't go back in time even when we'd give our whole future to do so. And so these little moments that sometimes seem so pointless, they're actually opportunities to do the things we know we need to do.
People make mistakes, and we still have to love them and hope the best for them, even if that means our own tiny piece of them is broken. We carry that broken piece with us forever if it's not fixed.
That's how important those tiny moments are that we let just slip away.

Hemingway said that people are like their bones- they break sometimes. And sometimes the break heals, and it is stronger in that place than it ever was before. But even when it is stronger, the break is still there. It never goes away, no matter if that is what we want and hope and pretend to be the truth.

It's one of those cancer clarity moments, I guess.
I don't feel right judging my stepmom for this, even though I miss my family- or what once was my stepfamily. Christmas and Thanksgiving and Easter weren't the same without them, but maybe that's just the way things will be for a while. Or maybe that's the way things will be forever.
In the end, the truth is, this woman has no obligation to be my family. It hurts, but I have to think of my dad, and what he would do. He would be selfless and wonderful and forgiving.
And so that's what I'm going to use this tiny moment to try to be.


This is probably the most personal blog I've ever written, and it's honestly quite frightening to put out there. In essence, my journey with my stepfamily is over, and I'm sharing all of that with you- not just because I can, but because it's important, this little bit of knowledge I've been granted. And I know you'd share it with me, if it was the other way around.

Thanks for listening.

Peace,

-MissM

I like big bundts and I cannot lie

I read an article on blogs the other day. This was a pretty long article that said the best blogs are those with a specifically stated purpose and those that do not operate as a day-to-day journal. Journal blogs, I read, are typically pretty boring, and serve primarily a therapeutic purpose.

That makes me want to apologize for this blog- I know that those of you that check it are probably bored sometimes. It's worked well as a running record for the Interferon, for people who want a realistic view of what living on it is like. And I guess, because I've found a few people on the web that are going through treatment or have gone through it before, I see a benefit to journal type blogs, as I have a genuine interest in what's going on in their lives now. Seeing treatment from another person's perspective can totally change how you feel about your own experience. Sometimes its so easy to get wrapped up in your own existence, you forget how important it is to connect to the people around you that make dealing with things so much more bearable.

Speaking of bearable, it's finally cooled off here a bit. There was actually a nice breeze tonight when we took the dog out that was- get this- refreshing. That's right: a cool wind. The weather (how old am I, talking about the weather like this?) has been wild here this summer. Within the last 2 weeks, there were something like 7 record-breaking days of heat, all of them with a heat index of over 105, one day getting up to 111. Crazy. And Canada, despite the cold winters, is looking better all the time.

Saw the Derma yesterday, and got 2 moles removed. I'm glad- I'd rather have them in a jar than on my skin any time. The abrasion that I've had since the last derma appointment (3 months ago) still hasn't healed, but the docs insist that it's nothing to worry about. It's the 4th doctor I've asked about it, and I'm going to ask them to remove it again on the next visit, just for the simple fact that so many people with melanoma were seen numerous times for concerning spots that were misdiagnosed. We must be vigilant! It concerns me that so many of my moles are irregular- you know, they show the ABCD's of potentially dangerous moles. I mean, probably 50 of them have some of the signs of needing to be removed. I guess it's a slow process, having them checked and removed as needed, and I know I'll be having scans and skin checks every few months for the rest of my life. Whatever it takes to stay above ground.
The docs also said I need to be wearing sunscreen each and every day, even if I'm just walking to my car and then into work or the like. Good thing Booby likes the smell of coconuts.

Several people have written to ask how I REALLY feel about doing another month of chemo. I don't know what to say, really. One of my friends said, hey, don't you think it's better to do it now than have to do it again later? Yeah, that's a good way to look at it. The truth is, it's only another month. It's been more than a year of doing all this bs, and I don't think it's any secret I'm pretty tired of it. But I'm trying to see it as a stepping stone on the way to the rest of my life.
I don't think I realized it until yesterday at the derma appointment, but I am very fearful of a recurrence, and, I guess I realized in the doctor's office, I'm pretty much convinced it's inevitable. When the doctor walked out of the room and I left, I was sweating like crazy, like bad news was imminent. Leaving, I actually thought, Wow, that was a relief. In reality, people diagnosed with stage 3 melanoma get treatment all the time and live NED for years and years. I read their stories all the time, and try to post as many as possible just to remind everyone how it's not impossible. But this year, I've had very little decision-making power in what I want to do, and I guess that's what I miss the most: I miss the power to be able to decide what I"m going to do with my life. I miss knowing that there's nothing wrong with me and that I'm just a normal person like everyone else. Even just a few months ago, I wanted to quit the chemo, but was talked out of it by my docs and friends. Had it been myway, I would've finished that month and that would've been it. But sometimes I guess we make sacrifices for the good of everyone, and, looking back, I guess that's what this is. I'm ready for it to be over, and it will be soon. It's really not as bad as it could be, and it's almost over.

I guess that's it for now. The job hunt continues, and I've made plans to meet up with some friends this weekend. Plans for the trip to San Diego in November are underway for my best friend's wedding. Exciting stuff coming up, friends. Be good and don't forget to say your prayers.

-Lori

Make awkward sexual advances, not war!

Well, kids, I started this blog last night, but became so moody I decided to give myself the night to think things over and wait until today to post. I'll blame it on the steroids, I guess.
The news is that I have to do another month of Interferon. Big-picture-wise, this is not such a big deal. It's just 12 more treatments. Yeah, I'm a little bummed, thinking I only had 4 injections left and then realizing it's another month. Kinda sucks, but, it's not like a scan came back positive or anything, so I'm actually feeling pretty lucky. And I'm sure it'll be over with before I know it, and all that jazz. Anyway.
Parkland was actually kind of a funny experience Thursday. Bobby went with me to mark the momentous occasion (which turned out to not be all that momentous), and was supposed to be with the PA who I saw a couple of months ago. Linda. You know, the lady who I tried to talk to about improving my quality of life while on chemo or getting off the Interferon early, and told me that the side effects "aren't that bad" and that I'm not taking "that much Interferon." Well, I evidently scared her that last visit, (which, let's face it, she deserved) because she wouldn't even come in the room to see me Thursday. She walked by a few times, and then, about 20 minutes later, she sent in somebody else, an actual MD this time, who I actually really like and who was really receptive to what's going on. It was a good experience; the new doc really seemed to take her time, was careful and felt my lymph nodes for swelling (first time that's ever happened at Parkland), and said we'd schedule scans for next month. So, all in all, things could be a whole lot worse.
Not sure why, but the nausea and the rash have been a little worse this last week. I've been trying to get back on track by walking and following my Achilles schedule, but the rash made it impossible for a few days. Worst rash I've had since I was in the hospital, and I had to take steroids two or three times just to get it under control. (That's right, girlie-man, I'm going to pump you up.) It's a lot better today, so I'm gonna try to start the training schedule again tonight.
I've been dodging phone calls and such this last week, since I was feeling so sick. I guess people know when they call and I don't call back that this is what's going on. I hate talking to people when I'm sick, I just don't know what to say and it makes things so awkward. It's hard- I want to be able to talk to them, but then, I hate hearing that sound in their voice when they feel sorry for me. It's really bad with my mom... I think it bothers her the most. I love my mom, and she's such a neat lady, but her being a nurse, this has been the most difficult for her, I think. She's not even really that much of a worrier, not nearly as bad as my dad was. I wonder sometimes if God did this for a reason, if He made sure my dad was gone before I found out I had cancer. It would've driven Dad crazy worrying about me having cancer. I guess the Big Guy really does know what He's doing.
I've been researching Interferon a little these last few days, trying to find web videos and such to explain how Recombinant DNA is made. It's just a natural curiosity, I guess, to see how this stuff works that I'm putting in my body. I thought maybe if I knew, it would work better somehow. Anyway, Wikipedia boils the information down pretty well, and it's interesting stuff, actually. Evidently, "Interferon was scarce and expensive until 1980 when the interferon gene was inserted into bacteria using recombinant DNA technology, allowing mass cultivation and purification from bacterial cultures."

When I was in the hospital, I had this great nurse who used to explain all the meds before he gave them to me, and he told me that one of the reasons Interferon is so hard on the body is because the body reacts to the recombinant DNA the same way that it does an organ transplant, you know, since it's not made of your own DNA and stuff.
Anywho, I guess that's it for now. We've decided to keep the party scheduled for August 19th for now, and just hope I'll be done by then. If not, hey, it'll be a pre-celebration for the big event, and all of you, of course, are welcome.

Hope everyone of you is well. Keep in touch.

-MissM

I have my doubts about disbelief.

I was going through a box of old files today, looking for some paperwork someone game me a while back, and was both surprised and touched when I came across a packet I had compiled when I was first diagnosed with cancer. I didn't even remember this, but I had evidently collected all the cards, gifts, and letters I'd received from friends and family at the time for the purpose of keeping my spirits up. Tonight, again, I was touched by the support of the people around me and the difference the love and support has made.

I am so blessed. Maybe I don't say that enough. Maybe, even worse, I don't realize it often enough. But it's true, and when I realize it, I am truly overwhelmed with gratitude.

I was just having a conversation earlier this week and mentioning that over the last year, I've slowly become a little angry- way more than I ever even realized until I started working around kids again- and I'm glad to be back in a place where I know just how lucky I truly am. That's what I love, what I've always loved about kids: they keep you so grounded, so in touch with how human you are and how humble you need to be, and, of course, there's their endearing honesty, too. It's good to have those reminders back in my life. It's good to be able to work with those that keep me so healthy.

With that thought, I begin to think, for the first time in a while, about the future, about possibility, and about walking through fear to a new, better side of life.

Maybe the most important thing I've realized through all of this is that none of us will live forever. We act that way, we pretend we're invincible. And that's why when you find out you have cancer, you have friends that drop off the planet: because the reality of it is too much. But was the goal ever to live forever? No. That's not really what we want. And it's not the goal. The goal is to create something bigger and better than ourselves, and to hope that whatever that is that we can create will live longer than ourselves. If we can do that, we're doing pretty good.

It's been a busy week- I went to a 20's and 30's support group meeting at Gilda's, "graduated" from the teaching program (they even mentioned how I'm finally out of the wheelchair for the most part), have been putting together a portfolio for job apps, started with the Achilles Track program, and am beginning preparation the party next month.

It's exciting, and I'm ready for the change. For the first time I think EVER at Gilda's, I felt like I was offering something positive to the group instead of just venting, and it was nice to be giving back, to be contributing something positive for once.
I've been reading a lot about the end of treatment and the effects it causes mentally, because I'm down to four vials as of today (How awesome is that?), and the final countdown is on. I have to say, I'm pretty proud of myself for being proactive about this, and I think it's gonna really help ease the transition back into "normal life" by being involved in so many other things.
When I met with my Achilles Track coach, Carlton, we walked together for 30 minutes, discussing things I need to be careful of as I try to get back into a routine and what my goals are. He was really positive and encouraging, and I liked him instantly. I'm glad he's here to help in this process.
The walk made me pretty sore: way more than I ever would've guessed. There's pain in my hip and ankles, my back and my jaw, and I've been taking Vicodin for it; but we think a lot of it is chemo, which is great news. Carlton is even hopefull that by October, I can probably do my first 5k!

I'm glad the whole school process is over, although it has been great, and, believe it or not, I'll miss seeing a lot of the people every day. It's been so good to get to know people here in Dallas that are like-minded: progressives that believe that teaching is more than just a job. I can't explain to you what it's like to think what my classroom will be like, the changes I can make as a single person in the education field, the way that knowing I have the power to education people feels. To be able to introduce high standards again, to influence others, to implement a change and a culture of power.
Okay, on my soapbox again. My bad.
Speaking of, I watched The Corporation tonight, and then immediately signed up with the local Green Party. A real motivating film, an extreme eye opener, that I suggest to everyone, and not nearly as slanted as Fahrenheit 9/11, even though it does provide a lot of insight into our nation's dark side. Remind me again why I'm not in Canada?
I guess that's it for now, kids. I'll keep you all posted on the party, so start making preparations now to be here August 19th. I've heard from a lot of internet buddies that they won't be able to be here, but they're going to be toasting in spirit that night. That means as much as anybody else being here, especially those that have braved Interferon on their own.

Keep up the good fight all, and I will, too.

-Lori

I'm sort of a big deal.

As is the routine, and, at the risk of being a little corny, I like to post some encouraging stories I read on occasion. This one really caught my attention; more than anything, I'm touched by this man's tenacity, high spirits in the face of unbelievable circumstances, and the will to keep up the good fight. I did do a little editing just for brevity's sake, and the piece includes several updates posted by Charles over time (as marked by *). Feel free to check it out on the bulletin board at MPIP if you're interested in reading it in its entirity (with dates listed), as I encourage you to do. I think, and hope, that you'll find this story as amazing as I did. It's a real testiment to not giving up hope and to fighting to the dirty, ruthless, bitter end without relent.
Thanks, Charles, for the inspiration and you'll continue to be in my thoughts.
--------------------------------------------------------------------------
*In 1997 I was diagnosed with malignant melanoma. I have had nine surgeries in the past eight years. A few weeks after I had one of my adrenal glands removed, last August, the cancer was found in both chest cavities and was determined to be inoperable. On January 17th, 2005 I entered the Ohio State University's James Cancer Hospital to begin five days of chemotherapy...

The chemo (IL-2) was administered with Demerol. After eight doses over three days my neurological system crashed. I was removed from the treatment and I barely recall the next 3 days. The Demerol (discovered from others on this BB that it was the IL-2, not Demerol) caused horrible hallucinations and I was told that my behavior was rather bizarre, an example being that somehow I made my way out of my room, naked, in a wheelchair and was carrying on a conversation with the wall, believing it was my brother.
A week after entering the hospital I bottomed out, having lost all motor functions and feelings in my arms and legs, I lost my voice and speaking was almost impossible. That afternoon I was given IVIG... was not able to take steroids because they would have destroyed any good the chemo might have had... On January 28th, after numerous tests, I was taken via a gurney into the underground tunnel complex under the University's Hospital system and transferred to Dodd Hall, which is a rehabilitation hospital.

At Dodd I continued to receive weekly IVIG and after each infusion I was feeling a little stronger. This may sound like a horror story to you but I want you to know that I was one of the lucky and fortunate patients. My fellow patients included recent amputees, stroke victims, severe brain damage caused by automobile collisions and spinal cord injuries I have regained my voice and ability to speak and to swallow without choking. I walk with the aid of a walker with wheels and I continue with physical and occupational therapy on an outpatient basis. I'm working on regaining my sense of balance, strengthening my limbs and improving my dexterity.

*My doctors and I both agree that I am on the road to recovery. The progress I have made would not have been possible without the love and help that Ludmila and my family have given me over the past weeks.

*I am home and slowly getting stronger, my walking is unsure and my balance needs some work. I go to OSU East Hospital twice a week for physical & occupational therapy. Last week I found out that the cancer in my chest cavity has been reduced by about 60%. I continue to work hard at regaining my strength and dexterity in all limbs.

*Earlier this week I underwent another CT scan and blood work to determine the status of my melanoma which, after nine surgeries, had lodged in my chest cavity and was inoperable. Most of you know... [the chemo, b/c of previous conditions, at one point] paralyzed me from head to foot. Through continuing rehabilitation I am slowly getting stronger. Yesterday I met with my oncologist and was informed that I am melanoma free, cancer free for the first time in nine years. She advised me that if this cancer does not reappear in the next nine to twelve months my chances of total remission are greatly increased. I am convinced that your collective prayers and support, along with my decision to change oncologists, and the love and compassion of my wife has seen me this far in our battle for my improved health.

*A few weeks ago I had another CT scan and it was negative and my blood work was normal. I encourage anyone fighting this disease to work with an oncologist that you are comfortable with. Don’t give up hope and accept all the love, help and prayers from your friends and family. In closing, God bless all of you on this BB for your kind words and support. -Charles

[update: Charles has been cancer-free for more than 8 months.]

Low self esteem? You've earned it!

Another rip-off from the kids at PlanetCancer.com. Enjoy!
----------------------------------------------------------
Top 10 Signs You've Joined a Cheap HMO

	Annual breast exams are conducted at Hooters.
	Directions to your doctor's office include, "Take a left when you enter the trailer park."
	Tongue depressors taste faintly of Fudgesicles.
	The colon specialist is only available on his days off from Roto-Rooter.
	Only item listed under Preventive Care coverage is "An apple a day."
	The used needle receptacles have recycling symbols on them.
	Patient responsible for "200% of out-of-network charges" is not a typo.
	Your Prozac comes in different colors with little "m's" on them.
	The radiation techs are wearing old Stormtrooper costumes.
	The only expense covered 100% is embalming.

Your free guide to Skin Cancer and all its Glory

Just saw this pic and these videos on Que Sarah, Sarah's blogspot, and thought they were great. Be sure to check them (and her blog) out!

Video of Imogen Potter, skin cancer patient

How Melanoma Spreads

-MissM

Damn it feels good to be a gangster

5 vials left.
5 little vials.
What exactly does that mean to you and me? One month of chemo left as of today! One month, people.
Dust off your party hats 'cause it's almost time for the event of the year: The No Mo Chemo Party.



You've heard of the Bionic woman and Six Million Dollar man? Well, the Boob and I spent our time waiting in line at the pharmacy the other day adding up the cost of the last year's medical adventures. I think I could feasibly be their love child. The value of my body breaks down like this:
11 months of at home injections: $132,286
1 month of in hospital high dose treatments: $200,000
33 day hospital stay: $500,000
1 stool sample for my "favorite" nurse: freebie (and eternally satisfying)
14 treatments of Vancomyacin: $14,000
1 toe removal: $30,000
Various scans: $100,000
Crutches: $40
Salvation Army Wheelchair: $60
Kytril (5 pills): $1500
Vicodin, Lexapro, Phenergan, Ativan, steroids, etc: $20,000

Outliving all you b*tches: PRICELESS!

Sooooo......
The tentative date for the "No More Chemo Party" is August 19th. Mark your calendars, save the date. You are expected to show. Come as your favorite prescription drug and you get a free syringe of vodka!

As far as how things are going, here's the gist: the chemo is hurting me today, but I think, more than a mental state, it's probably the fact that I sat out in the sun for a while trying to get my car started. Plus, there's the fact that I'm having trouble with bowel control. Yes, that's right, kids, we're back where we started. We've gone from week-long constipation to dropping a load in my shorts 2 or 3 times a day now. Actually considered getting Depends today, and for good reason. Jeez. I'm so ready to have this all over with.

It's hard to think it was a year ago on August 9th that all this began- not the cancer, but the chemo. I'll never forget that month in the hospital- the days taking years to pass and eons going by over the 45 days it took to get discharged forever. Wow.
I'm not going to lie and say I'm not scared that remission won't last. It's really common for melanoma patients to find tumors or more malignancies in the year after chemo. It happens, and that's reality. My friends, they don't want me to talk about it, but I feel like I need to be honest and just embrace the fact that this may not be the end of this fight. When I threw a fit and told Dr. Daya I didn't want to do chemo any more, he flat out told me, "If this melanoma comes back, it will only be a matter of months before it will have taken over your lungs, your liver, your brain. It moves that quickly, and it will all be over."
It's a chilling thought- especially for someone who thinks the world revolves around them... that I could be gone, just like that. I know we're all dieing in the whole all-encompassing sense of things, in the way that none of us can escape it, ultimately. But once you've been touched by the reality of death, the way you think of it is totally different. And, on the other hand, you struggle with it the way your "old" self would, too. I'm reading "Dancing in Limbo," a great book about the way cancer changes life more than we ever know until we're faced with life after treatment. I read the other day a great quote, and I just had to share it with all of you: The author wrote that, "[s]urvivor grief is a paradox. It seems wrong to grieve when we have got what we most wanted- another chance at life. Furthermore, we are grieving major losses... we grieve a deeper loss. Our most comforting illusions are gone. We are both mortal and vulnerable, and we know it beyond a doubt."
I don't think it's a coincidence that cancer patients are more likely to suffer from depression after their year of chemo is over than when they are in the midst of treatment. Life is different. People who don't understand you and break you down instead of building you up seem invisible in a lot of ways.
Melanoma, it's rough enough on it's own: an aggressive, quick-moving cancer that nobody wants to think about. Lots of people never deal with melanoma-or, the beast, as its commonly called- after their first year of fighting it, and then, you know that some do. You pray this will be the only episode, but you want to be prepared either way. I feel like acknowledging that somehow helps me to win this fight.
In the real world, I'd just bluff my way through a confrontation when I was scared.
Here, in cancer world, it's different. It's a much bigger deal. But I've been lucky: had great doctors and great luck, and I guess, in a way, that's why I'm here, to beat the odds. Just a simple girl kicking cancer's ass.

What really surprises me is now that the chemo is coming to an end, I feel strange about not having an active way to fight the cancer. You hear survivors say, "everything has changed," and, for the first time, I'm seeing why they say that. It's a change I'll never be able to explain, just like I'll never be able to explain why, in a strange, sick part of me, I don't want the chemo to end. But I'm doing what I've learned to do: I'm stepping into the scary place and pretending I know what to do next. It's the old "Fake it till You Make It" routine, and all I can think to do is focus on eating right, getting active again and rebuilding a part of my life I've missed out on. I've joined a running club called Achilles Track Club and it's specifically for runners with "disabilities," as wierd as that sounds to say. I'm very excited to get back into the joy of running, and I meet my mentor on Wednesday, who's going to set up a schedule for me so I can start taking part in local fun runs and such. Most of all, I miss the freedom that running allows, but there's also the appeal of the discipline and comraderie you find in running. Plus, I can't wait to look good in a bathing suit again. And isn't that what life is really about?

Thanks for listening to the rant. I know some of this is scary, but for those faithful few of you that are always with me on here, you help tremendously by simply being present. Seems like we did this together, and now I can't believe how close we all are to the end of this again.

I'm thinking of all of you and how great you'll look dressed as suppositiories! Keep the comments coming....

Miss M