Miss Melanoma - LIVE! (sort of)

So kiddos, here's a new twist to add to the fun. Video! That's right, campers, you read it here first: it's my first video blog. There'll be more, of course, in between the EVER engaging text blogs. So grab your party hats and click on the image to the right (no, your other right) to start the good time, and thanks again for dropping by. (hint: You need Quicktime to view this- Bobby said to tell y'all this. Whatever that means.)

-MM (LL)

p.s. I hate my voice on tape! I promise it's not like this in real life. Ok, maybe it is.

What would Scooby Doo?

Here's what I'm thankful for today:
1. I'm thankful that my friends are still funny, I'm still cute, and Bobby still hasn't seen me poop on myself.
2. Even though my stools are looser than a Quaaluded Tara Reid at a USO show, we haven't reached Ebola-like symptoms yet, and that's got to be good.
3. I'm thankful for my opposable thumbs, that I still have a little change to give to the homeless, and that the monkey in my closet hasn't come after me yet.
4. I'm thankful that I still have my hair, even though I could use a little help with that whole shaving thing. But hey, it's better than unexplained hair growth. Chickstaches aren't cute.
5. I'm so thankful- SO THANKFUL- that I'm home everyday and that I don't have to be in the hospital. I mean, you have no idea.
6. I'm thankful that I have people around me who email and come to see me and check my journal simply because they care how I am. And I'm thankful that most of them have stopped calling me Spongebob Squish-pants.
7. Even though there was a point I would've taken a doctor with a degree from Sally Struthers school of As Seen on TV, I've been lucky. So I'm thankful for all the amazing things my doctors have done for me all throughout all this, for the care I've received, and for how lucky I've been.
8. I'm thankful for the things that I accomplish everyday.
9. I'm thankful that I don't have a rash that covered me from head to toe in tiny little chickenpox bumps. My bumps. My bumps. My lovely little lumps. Check it out.
10. I'm thankful that this is Melanoma Stage III instead of Stage IV or V of anything else.
And the number 11 reason that I'm thankful is:
11. I may not be able to work, but at least I don't have to wear a visor and a nametag.

Afternoon delight

Just a quick note to keep everyone posted, or blogged... I've updated my www.MissMelanoma.com site with several pics, including one from Halloween. Also, there's a new Book Review page that will be coming soon, and, if I get on it, a Lymphadema page and a Friends of Cancer Patients page should be added, too. If you know me, you know that I believe in the power of procrastination, so feel free to get on my sack about these so I actually get them done. And don't forget to check the fundraising page for new items all the time. That's sarcasm, right there, kids. It's my Anti-Drug, kinda like crack, and I'm a bad mother shut-your-mouth.

If making fun of people was against the law, I'd be a lifer

(Meet my Uncle Stan, whose parents were part hippo.)

It's been a while- quite a bit of time actually- since I was having such a good day that I didn't want to go to sleep. When you have those days, and you know what I'm talking about- you don't want them to end. You want them to go on and on and just keep getting better. I was in that kind of mood last night when I laid down to go to sleep. I was having the best day I'd had in so long, laughing like I hadn't laughed in weeks, and just being so happy that I'd had the day that I had.

A lot of it stems from the fact that I don't work right now, and by "work" I mean "smoke" and by "now" I mean "crack." I've got a couple of projects (porn) I'm working on, I try to keep the webpage fresh, I keep in contact with friends and people I used to work for... but I'm not productive like I used to be, I guess. I'm tired a lot. REALLY tired; and I get tired of being tired, but there's not so much I can do about it. Tired. So tired. Like a happy full-time Sherwin Williams paint huffer tired. Sleep study tired. Nick Nolte in mug shot tired. Anyway, the medication makes me so drowsy (see tired) sometimes, and my immune system sucks, so I catch every little thing, and the chemo has made me anemic, and I'm just worn out from the chemo, too, most days. And this whole time I've been beating myself up for not doing more, for not getting up earlier, for not being more productive. And yet the more I try, the more tired I feel and the more I sleep and it's just been a never-ending self-defeating battle.

Which is why I joined Gilda's club. I didn't really know what that was going to mean to me, but last night I went to my first function there. Here's what I got out of it: the club itself was established by Gene Wilder after Gilda Radner died. She had been connected with a group of cancer patients and survivors on the west coast, and when she went back east to live, that sort of support group was pretty much non-existant and she had tried to recreate the same type of network there. She continued to try to build that sort of support until she died, but was never able to. So Gene Wilder worked on this after her death, and now there's Gilda's Clubs all across the U.S.

So just walking into the place , I knew that I would be surrounded by all kinds of people who knew what I was talking about; and, of course, they did. But to be able to just vent and say, "This really sucks- and people just don't understand- have got it all wrong- I have no control over most of this stuff" and all of them just nodding and agreeing and saying, "Dude, we've been there."
It blew me away what it felt like to have advocates all around me that I'd never even met before, and what further blew my mind was these people were just amazing examples to me on how to handle life. It was like being in the midst of synergy. It was an experience I'll never forget, and one that I feel so blessed to have had. Sometimes when stuff sucks, you come across people and places that make you realize what a divine plan is, and that there are reasons for things that we'll never understand until we encounter the lessons we're meant to learn. That's what Gilda's club was to me last night, and I want to show my appreciation for it by being a part of something so good. Did I mention they make kick-ass pink lemonade? Anyway, my point is this: non-profits mean a lot when you're on the other side of them, and I encourage all of you to take part in one before you really need their help.

Besos.

-L

Peace.

I'm what Willis was talkin' about

The big news is I'm getting my own place. I've been working the pole for a while and I'm now financially ok to move on and I'm ready and excited. I've been staying with a very good friend of mine up until now, but for a while I've thought I should be on my own, and creative differences (along with my meth lab) have brought us to this point, which I think we're all pleased about. And that leads me to my next point, in a very round about way.

When I was in the hospital, I read a bio on this girl with melanoma who said that one of the things she hated most about having it was the scar on her arm and how she felt she was continually discriminated against and judged for it. When I read it, I'll be honest with you, I thought the girl needed a good stiff, uh, drink (or poke). And I thought she was feeling sorry for herself. I'm not sure that I still don't believe that. This week, though, I've realized just how scared of cancer people really are. I guess I knew that before now. I mean, I was scared of my Dad's cancer. But still, somehow I'm surprised when people I've been friends with for years drop off the radar. So here's what I got for you, today: if you have melanoma, or any other cancer, for that matter, you're probably not going to feel any different from when you didn't have it. But having it means people will associate you with a very scary, very real disease. Different people will deal with that in different ways, meaning sometimes they'll distance themselves from you. Other people will drive you nuts trying to run your life because they don't know how to deal with not being able to control your illness. And you'll lose people. It hurts, but it happens.

If you know someone with cancer, just remember, they want to be treated just like you treated them before they had cancer. They don't want you to save them or to change them or fix everything. They just want their friend back.


I truly believe I've been chosen to have this disease. It's definately changed my life, and I'm not going to say I've enjoyed having diarrhea for the last 3 months, but I have learned more about life and enjoying it and valuing the little things than I ever could have without it. It has made me love my life and the people in it and I appreciate all I've learned from it. I'm high on life, people. And by life, of course, I mean glue. And I hope you are, too.

My Goal is for the words MissMelanoma.com to be thrown around more than a drunken dwarf at a biker rally.

So today, I thought everybody might enjoy knowing the contents of my morning trailmix and afternoon cocktails. This is good stuff, I swear. Okay, so remember the rash? Oh, yes, the rash. Well, it comes back with every chemo injection. So that requires Zyrtec in the morning and Benadryl in the evening. Now, keep in mind, I take the Zyrtec when I get up in the morning, which gives me about 30 minutes before I'm so drowsy I want to go back to bed. But it's a nice, warm, sleepy feeling, so how can I complain? I also take Mucinex morning and night, which tastes like battery acid, by the way, so I don't recommend you getting a respiratory infection. Lexapro in the morning and evening also to keep the voices away :). And in the afternoon, sometimes I have to take Phenergan to kick back the nausea, so I can eat without wanted to spew it all over the person next to me. This pill also helps with the general nausea from taking so many pills in general, ironically enough. Phenergan knocks me flat on my patootsky, and it only takes about 20 minutes. Plus, of course, I alternate Tylenol and Motrin every 4 hours to keep the fever at bay, and Aleve for the headaches (side effect of chemo). Last but not least is the antibiotic, which was originally to be taken every 6 hours, but is now down to every 8 hours because of the rash. Clendomyacin, which, of course, makes me drowsy, too. Yiezer. Who feels like a nap?




BTW, thanks to all of you out there who have been sending emails and comments and calling during these last few tough weeks. I don't know what I would've done without you.

Double Your Pleasure

Okay, so it's been a day or two and I'm starting to get back in my right mind. Who knew? I'm crazy. Did you know? I guess the point is that when I'm normal, I'm crazy, but not crazy like this. This is like Courtney f**king Love crazy. But I'm better. No really.

Did you also know that cancer patients are three times more likely than non-cancer patients to become depressed? You did? You did not. You're frontin. Well, anyway, it's true. And that's been the cause of my recent overemotional outbursts, and I'm seeing the doctor again tomorrow for a solution. I guess I've been slipping for a while and just didn't realize it, especially when I was so happy to be out of the hospital. But hey, it happens. It's bananas, B-A-N-A-N-A-S! I feel better just knowing why I've been so down. The Interferon has a tendency to cause depression, plus being sick in general for long periods of time make it hard to fight it. When I read through the depression screening, I was shocked that it didn't just have my name posted at the top in big red letters- that's how close the symptoms were to how I've been acting lately. Seriously. Courtney Love crazy. Girl Interrupted crazy. Angelina Jolie crazy.
I'll be really honest and tell y'all that I almost didn't post these blogs. And then I did. They are downers and kinda scary and not fun at all, but they are real and if someone out there is reading this and going through this, too, I want them to know what it's really like, and that it's still going to be okay even though sometimes it doesn't seem like it. So, that's it for now. I've got to get back to filling that vial of blood to put around my neck and adopting Asian babies with mohawks.

Jo Mama

Okay, so I read over the last post and realize how depressing it sounds; thought I'd recant and let everyone know I'm okay. I'm sure the picture of the kid in the suicide bomber costume wasn't a reasurrance to anyone.
I just never thought I'd feel this way: it's only 4 months into this thing and I'm so ready to be well again. I still have 11 months of this left, and the thought of that is sometimes overwhelming- knowing I'll be unable to work and having to protect myself from getting sick the majority of it. Today I feel pretty good, I feel like I can do this and everything is going to be okay in the end. That this is just a short-term situation and I'm hella strong; way stronger than a year of chemo. (Sorry, that was a little cocky.) The biggest thing is I just can't believe I've slipped like this and let myself get down. I guess a lot of it is that I've never really been sick, and now it seems like one thing after another. The chemo has completely shot my immune system, so I'm not only constantly fighting infection, but I catch a cold everytime someone breathes. It sounds so stupid, but I just wish I had the support I did in the beginning of this. Over time, as I've been going through this, some important people have dropped out of the picture, and I don't blame them- they have their own lives, and their busy just like the rest of the world. I don't know how and don't even really know if I want to reach out to them and say Sh*t, dude- I'm down. I need a shoulder right now. Even if I knew how, honestly, would I do it? No, because I don't want to interfere with their lives. And I'm just plain mad at myself for having ever let myself get so soft that I need someone else so badly. That's a crazy thought, I know. When you have cancer, you HAVE to rely on people. You don't have a choice. That's something I've definately learned. It's tough for someone like me who is kindof a loner by nature, because you're stuck in these situations when the people around you are the big difference in you making it or not. But I'm tired of being that way. I want to be self-sufficient again and I feel stuck. Who knows. I keep faith in the fact that through everything I've seen and had to do, I've learned tons. I learn something everyday that only cancer could have taught me. This, I don't know yet what it is to learn. I hope that it's even though it hurts sometimes when you rely on people and really let them into your heart, it's not a bad thing to do that. That's all I got for now.

-L

Now with Extreme Whitening Power

Holas muchachos, just checking in. Will start the Interferon (chemo) home injections this weekend... from everything I've seen, it's going to be easy breezy. It's been a wierd day for me- even though I've gotten quite a bit accomplished in the last couple of weeks since I got out of the hospital, I've been really down.
It's wierd, and I'm not sure what's going on. I just feel down on myself, and I don't know how to explain it or even understand it. It could be that I'm bored, I guess, or maybe it's just that my body has changed so much in the last few months and I feel like I have so little control. To be honest with you, the whole not working thing really weighs on me, too. I try to be positive about it, but I just feel like such a loser when I think about it. I'm trying to keep in mind that this is all temporary, but a big part of me knows what a long year it could be if I don't snap out of this. Anyway, I'm working on it. Think of me if you get a chance and send some positive vibes this way.

You Think You Know, But You Have No Idea

Word to your mama, kids. Had a doctor's appointment yesterday, and Dr. Vk prescribed the at-home Interferon (chemo). I ordered it from the pharmacy, and it should be in tomorrow. I'll go in to the doctor's office and the nurse will teach me how to give the shots to myself for home administration. The picc line is still in my arm, which, if you haven't seen it, means I have two tubes that come out of my upper arm. I try to keep it covered; usually, if I have spaghetti straps on or something I'll wear a bandana or scarf around it. That's good cheap fun because the bandana I wear is blue and Bobby is always saying some Blood is going to cap me and then I'll be sorry. :) Sometimes the tie slips and the tubes fall out of the bottom, and that gets lots of looks, too. When I see people staring, I like to fake a mini seizure. It's a good time.
At my doctor's appointment yesterday I had to have blood drawn, and since I have a picc line, the phlebotomist had to send me over to the Infusion center to have an RN draw it up. The Infusion center is where I would've gone had I not had to get my chemo in the hospital: it's basically a room full of Lazy Boys and people hooked up to IV's getting chemo. It was easily the saddest thing I've seen in a while, walking in and seeing 20 people, most of them with no hair, getting chemo. And looking at them, I know they feel like ass because that's how you feel when you're getting chemo, and it's pretty clear from how they're laying in the chairs. The nurses, of course, are awesome there, and lively and loud and bubbly, and it all just made me think about a million things: like how people make a living from helping people, and how amazing that is to me; it made me think of all my friends, and how I just wanted to remind them of how lucky we all are to be healthy; and, of course, how this whole thing has opened my eyes, and what I can do to pay all these wonderful people back for what they do for so many others. Only thing I can think is pay it forward. I hope all of you do, too.