Monday, December 19, 2005
A Topic Touchier than a Vatican Summercamp
It's nearing Christmas, friends- the most wonderful time of the year. I know I have a lot to be thankful for this year, and it's the first Christmas I can remember in a long time that I was this excited about the whole thing. It's tough sometimes, when we're so wrapped up in our own little lives and all the things we have to get accomplished and bought and wrapped, it's easy to forget all the people around us who have it so much worse. People who are alone this Christmas, people who are sick, people that have no family and no loved ones, and people who are cold and hungry. We're so quick to forget those little miracles in everyday life that we don't have to ever worry about. They are there every day, so we forget what a blessing it is just to have friends and a warm bed at night. When I was in the hospital, what I wanted more than anything else was to be able to go outside and get in a car and go somewhere. That was the biggest deal to me, more than feeling sick, more than the hospital food, more than the loss of privacy, more than anything. I wanted just a little taste of freedom back. That total loss of freedom was horrendous to me, and I promised myself I'd never take it for granted again. Everyday now when I walk to the car, I try to think how lucky I am just for that. Just to have two legs, just to not be connected to an iv pole, just to be home.
Seems preachy, I know, but I just want to remind you this holiday that there are so many little things that could be taken away from us that we need to remember to be thankful for.
That's enough of the soapbox. Enjoy your pumpkin pie and be good to each other out there.
-L
Saturday, December 10, 2005
No Woman, No Cry
I guess everybody has those days- you know, those days when nothing seems to go right, when the bad outweighs the good, when all you want is one little thing and you get everything else you don't want. I went to Parkland yesterday for the first time as a patient. I went alone, because I insisted on being alone, I insisted on being dropped off because I'm a big girl and I can take care of myself. But Parkland isn't like the other hospitals I've been in, it's more like ER. It's the poorest and the sickest people who have no where else to go. And sitting there for hours upon hours just waiting to be seen, watching all the sick people, hundreds of them just sitting and waiting, it wore on me. That, along with the anemia, I guess, I don't know. It sounds dramatic, but it's just a really depressing place. People seem to have the soul sucked out of them in that basement, lined up in chairs, coughing and crying and bleeding and throwing up, waiting, just like me, waiting for hours, waiting to feel better somehow. So many people, and I should have just felt blessed because there were so many so much sicker than me. I thought I was strong enough: to go and handle it alone and not have to worry about what it would do to me mentally, and I don't know what happened exactly, but I just started crying. I cried and cried and cried. I cried more than I have cried since I found out I had cancer, and I guess maybe that's why I cried so hard. Maybe I realized, looking at all those sick people, just how sick I could become. Maybe sitting next to the lady with lung cancer made me think about how this cancer could spread. Maybe I was dealing for the first time with how serious this all is. I don't know. I don't really even know what to say about it, and, of course, I thought about not letting anyone know how I cracked like an egg, but I guess that I hope by sharing it, somebody else with this kinda situation knows that there will be days when you're just so tired, just so ready to feel better, just so tired of being sick and so ready for the whole thing to be over. And I guess that's ok. I guess everybody needs those days when they just need to let it all out and be sad about it and give themselves a chance to get over the suckiness of it.
I feel better today. I came home and had a couple of glasses of wine and some mashed potatoes. My scar started burning, so I assumed Voldemort was near, and thought it might be best to just hit the sack early. I took a shower and got a good night's sleep. I guess I feel lucky again to be as well as I am. My PET scans all came back clear, which means, conclusively for the first time basically, that the cancer hasn't spread. It's the best Christmas present I could ever ask for, and the truth is, I am a lucky girl, even when I don't feel like it sometimes. And maybe this whole thing will just somehow make me stronger. That's all I'm asking for: a higher purpose in all this. A reason to learn. And a better day tomorrow.
I feel better today. I came home and had a couple of glasses of wine and some mashed potatoes. My scar started burning, so I assumed Voldemort was near, and thought it might be best to just hit the sack early. I took a shower and got a good night's sleep. I guess I feel lucky again to be as well as I am. My PET scans all came back clear, which means, conclusively for the first time basically, that the cancer hasn't spread. It's the best Christmas present I could ever ask for, and the truth is, I am a lucky girl, even when I don't feel like it sometimes. And maybe this whole thing will just somehow make me stronger. That's all I'm asking for: a higher purpose in all this. A reason to learn. And a better day tomorrow.
Monday, December 05, 2005
A Reaction Fraction
Bobby here, guest report #2.
Just a quick little story from the other side of the room. This story is requested by our lovely Lori Lee.
So, our favorite melanoma patient has had some low numbers lately, (see anemia and low blood count). What does that mean to you and me? Well good and bad. The good is it makes our girl talk and act like she's dropped a few Quaaludes along with some Mad Dog 20/20 (grape drink!). She's lots of fun, yes, more than normal. The bad is fatigue, yes more than normal, muscle cramps & spasms, chest pains, "foggy memory" (I love that song), lots of easy bruising, etc etc. I told the cops I didn’t beat her, but whatever. She burned the toast. SHE BURNED THE DAMN TOAST. She deserved it.
Onward we go. Numbers were low enough to skip an Interferon treatment and let the ole' body build some immunity. Well, last night was the chemo treatment after the injection vacation. Let's say reaction would be all capitals, as in REACTION. Our girl got a wicked fever, as in 102 degrees fever. Horses get shot for less. Anyway, it was a long night. I remember falling asleep around 6 am today. Lori called the on call oncologist who said go to the emergency room.
Now there’s a saying I’ve heard and it goes “No one knows your body better than you”. No perverts here people, I’m being serious. Lori went ahead and took some more Tylenol and a “tepid” shower, and the fever eventually broke and all is well and she got some great sleep.
This happens semi-occasionally, I think last night was one of the more serious. It’s gotta be no fun going through this, so send your love to Lori.
On a funny note, Lori was FREEZING last night (see fever above) and I should’ve taken a picture because she had on the following:
One pair of socks with a slot for each toe
One pair of socks on top of that
One pair of pajama bottoms (flannel)
One wife-beater
One heavy duty sweatshirt
One Flickerstick ski cap
One blanket (acquired from a local hospital)
One comforter
One comforter on top of that
And she was still freezing.
At one point, when she finally passed out, I had to put in a prop for a picture. She looked too gangster to pass up the opportunity.
Lori makes it all look easy but even last night was tough for her. It’s a reminder of how tough she is and how great it’s going to be once she’s done with treatment.
Fun is fun and serious is serious. Last night was a little bit of both.
Bobby
Just a quick little story from the other side of the room. This story is requested by our lovely Lori Lee.
So, our favorite melanoma patient has had some low numbers lately, (see anemia and low blood count). What does that mean to you and me? Well good and bad. The good is it makes our girl talk and act like she's dropped a few Quaaludes along with some Mad Dog 20/20 (grape drink!). She's lots of fun, yes, more than normal. The bad is fatigue, yes more than normal, muscle cramps & spasms, chest pains, "foggy memory" (I love that song), lots of easy bruising, etc etc. I told the cops I didn’t beat her, but whatever. She burned the toast. SHE BURNED THE DAMN TOAST. She deserved it.
Onward we go. Numbers were low enough to skip an Interferon treatment and let the ole' body build some immunity. Well, last night was the chemo treatment after the injection vacation. Let's say reaction would be all capitals, as in REACTION. Our girl got a wicked fever, as in 102 degrees fever. Horses get shot for less. Anyway, it was a long night. I remember falling asleep around 6 am today. Lori called the on call oncologist who said go to the emergency room.
Now there’s a saying I’ve heard and it goes “No one knows your body better than you”. No perverts here people, I’m being serious. Lori went ahead and took some more Tylenol and a “tepid” shower, and the fever eventually broke and all is well and she got some great sleep.
This happens semi-occasionally, I think last night was one of the more serious. It’s gotta be no fun going through this, so send your love to Lori.
On a funny note, Lori was FREEZING last night (see fever above) and I should’ve taken a picture because she had on the following:
One pair of socks with a slot for each toe
One pair of socks on top of that
One pair of pajama bottoms (flannel)
One wife-beater
One heavy duty sweatshirt
One Flickerstick ski cap
One blanket (acquired from a local hospital)
One comforter
One comforter on top of that
And she was still freezing.
At one point, when she finally passed out, I had to put in a prop for a picture. She looked too gangster to pass up the opportunity.
Lori makes it all look easy but even last night was tough for her. It’s a reminder of how tough she is and how great it’s going to be once she’s done with treatment.
Fun is fun and serious is serious. Last night was a little bit of both.
Bobby
Friday, December 02, 2005
I'm Just Here for the Ativan
Well, for those of you who don't know, Thanksgiving was a blast, just awesome. Bobby and I both got our first annual Thanksgiving lapdances, (thanks to Amanda), and I just don't know how you can go wrong with that. The game, although we lost, (as everyone knew we would), was actually really close, and Kelly's Thanksgiving dinner had the best dressing and pumpkin pie known to man, plus Uncle Jeff's circus going on outside was fun and entertainment for everyone.
Had chest pains on Saturday, along with some serious leg spasms and cramps that would put polio to shame (okay, not really). The ER Doc gave me ATIVAN to help with all of it. OMG. It's like liquid pleasure, and by that I mean it's a tablet and it took away most of the nausea and most of the muscle stuff, too. Good stuff. I mean real good stuff. Like, I want to get it's name tattooed on my chest (or other places).
Lots of exciting stuff coming up... went to Parkland today, and of course, now I feel more greatful than ever. There's a lot for all of us to be thankful for, kids. In the waiting room, we sat next to a planet of the apes lady, who cussed out 3 of 4 social workers out while we were there. We didn't have popcorn, but it was entertaining enough.
My doc told me to wear a mask while I went inside the hospital, which I did like the good cancer patient I am. My advice to you is if you ever need to clear a hallway or waiting room, walk in with a mask on. I swear, you'd think I had "Bird Flu" written across my forehead. I've never been stared at like that, and anyone who knows me knows that I draw enough attention to myself that THAT's a big deal. What people didn't get was I was protecting ME from Them, not the other way around. (like I'm gonna care if I give the hospital SARS!?!?) It was funny nonetheless. And there was tons of tagging in the bathroom. Who goes to a hospital to write on the walls? My favorite tag was "F**k all you hatters out there!" Yeah, those hatters can be a real drag. The anemia has made me so light-headed and such a space cadet lately that I've been laughing like I've been breathing ether, funny as hell. I think people around me were actually getting a contact high.
Anyway, things went well and I'll try to be a little more regular on the blogs. Everybody hollar at me when you get a chance.
-L
Thursday, November 17, 2005
My other ride is Miss Melanoma
Getting ready for Thanksgiving and the big Texas A&M game. I mean, yes, we're gonna lose (again) this year, but does anybody go to College Station to really see who is going to win the big game? It's a good time all around, though, and I get to visit my old stompin grounds: the Dixie Chicken, the Dry Bean Saloon, the College Station police department. I'm excited and ready to give myself a reason to throw up.
The plan is to have Thanksgiving dinner with Dad (see above) and the family , which I'm also excited about. (Check out the new tatt on his hand.) It's great to have friends that are like family to you, that you actually get excited about seeing during the holidays.
Tuesday was the big 31 (can you believe it?) and I had a great one. I had chocolate cake at midnight with candles and everything. One of my presents was getting my first pedicure since the surgery, and I think it turned out pretty cute. Spent hours playing House of Dead at Dave & Busters, which made my little queasy friend all motion sick. That's okay, though, because the Dramamine was a good addition to the party. Also went up in "The Ball," and had two of the strongest vodka & tonics ever, which made the rest of the evening STELLAR. I was amped just to be feeling so good. Then went down to July Alley, where the bartender hit on me so hard my head was spinning. Hey, I may have cancer, but I still got it. And by "IT" I mean cleavage. Anyway, that's it for now. I'm working on some more promotions for local stuff & I'll let you know how it goes. Enjoy your pumpkin pie if I don't talk to ya!
-L
Monday, November 14, 2005
What if the Hokey Pokey is what it's ALL ABOUT?
The scans are coming! The scans are coming!
So the scan results are in, and they're all good. The MRI, the bone scan, and the CT scan were all negative (which is positive!), no spread of cancer as evidenced. Who's a happy camper? Your mama is.
It's been a crazy few days since I posted last time. Saturday I came dangerously close to passing out in the shower, i.e.- I started to black out and then laid in the bottom of the shower for twenty minutes trying to recoup, which in reality meant I just thought about the soap scum and all the hair in the drain. Then I went into wretching mode, which really meant that I just transferred my attention to how badly the toilet needed to be cleaned. Finally I called Bobby in, after I had taken off all of my clothes and was laying on the tile, where Bobby kept saying, "Um, oh God, don't lay there, um, Lori, oh... eww, gross." Later I was informed that this was a floor where "countless girls have hurled and numerous guys have pissed anywhere but the toilet." At the time, though, you know how it is: you just want cold tile against your body. Oh, the porceline god, we bow down to you.
So I took a Vicodin, and if you know me at all, you know that it had to be some serious f**king pain for me to do that, but I did and felt better. Anything was better than going to the ER, which I seriously considered for about .72 seconds. I've come up with some theories as to what was going on, but they involve the Black Panthers and radio waves transmitted through Nancy Regan's teeth, and we just don't have time to go into all that, kids. I did speak with Dr. Vk about the incessant nausea, and he wrote me a Rx for Kytrol (sp?), which isn't covered by Medicaid, and, guess what, is $1500 for a month's supply. So the plan now is to sell my heart on the black market, but it's so tempting to buy a car instead. I found a great Impala on car soup, and it's a toss-up: nausea free for a month or a mode of transportation? You decide.
Sunday, November 13, 2005
Extreme Amputation!
Girl, you knows it's true! Before and after photos for all of you that have been requesting them. Notice how chunky that right foot is compared to the left one... yeah, that's a difference in size 6 and 1/2 and a size 8. It's a little bit funny, this feeling inside; and shoe shopping, for that matter. Hey, you can't say I don't have character.
Wednesday, November 09, 2005
The World Looks Mighty Good to Me
Went to the YMCA today, they have a program for people on Disability to join at a reduced rate, and I think I'm gonna. It's been months since I've been able to work out, and the last dr. appointment with Dr. Bietsch I got official clearance. They said to start out slow, walking just a block or two a day at first, but I'm pretty sure I'm doing that already. They said the more active I am, the more my leg is gonna swell, but I can't be this out of shape. It's making me crazy. Tom Cruise crazy, which is not to say I'm Courtney Love crazy yet, but lets not press our luck, kids.
Anyway, I'm gonna start walking and hopefully get up to running again, and I'll add up my miles to see how long it takes me to get to marathon status- 26.2 miles. I'm gonna do it, but it may take a while- i.e., all of you will be grandparents. So there you go. That's it for now, monkeys. Let's be safe out there.
-L
P.S. Big news coming soon about a short film you're gonna wanna see. Stay Tuned!
Sweet Home Melanoma
Here's what I got for you today: I went to Gilda's club tonight, and there were about 6 people that came to the living with cancer suppport group. I can't tell you what it's like, being around all these women with cancer that handle it so unbelievably. It is just an inspiration to hear them talk. I'm having trouble articulating it tonight, but just trust me that they are inspiring just to know, and I feel blessed for the experience. Blessed, I tell you. Word.
Friday, November 04, 2005
Learn all the rules. Then break them.
Wow, quite the weekend, and I spent a lot of it with Bobby. What can I say about Bobby? If I started typing now, I'd still be sitting here in a year typing about him- that's how awesome this guy is. That's how blessed I am just to have him as a friend, and being more than that, really getting to know him and falling for him- it's been amazing. He's always there, that's what really gets me. He's ALWAYS there with a kind word and a pick me up, he's always saying the most incredible things to me. A lot of times I think about how he deserves so much better than this- than having a girl with cancer... and I just wish I could run away to an island and just deal with this all by myself. But anyway, that's not the point. A lady in my group tonight told me that I don't want to be loved, because I don't want the people around me to feel the pain that I'm going through. I'm not really going thru any pain; the chemo is more an inconvenience than anything else. But the thought itself blows my mind. Really, I can not describe it, but you have to trust me. Anyway, here's what Bobby and I were talking about today:
So we're sitting around talking about our respective high schools, and he asks why I didn't go to my 10 year reunion. I'll be honest, because I was honest with him, I know I've done a lot, but I feel like I haven't accomplished my "big thing" yet. That's what I told him, and I meant it. Do you ever feel that way? Like you were born to do something big, something great, and you just haven't done it yet?
You should've heard Bobby go on and on about how wrong it was for me to say that. He says the craziest things, said today that other people look at me the way I think about the nurses I come across. I don't know, I don't see it, but it's not the point. What is the point? Simply this: That it made me think a lot about life and about destiny and about what it's all about. What if THIS is what it's all about? Today, right now, this moment. Everything in my life- all I've learned, everyone I've known, mistakes made and paths taken - all of it lead up to this moment, all of it was because of what I'm supposed to do today. It's a mind-boggling thought, but it's not too big to wrap my brain around, and here's why: because part of me believes it. Part of me believes that my whole life has been leading up to where I am now, to this experience, to melanoma. It's the big thing I've been destined to do with my life. I've always known I was supposed to do something big, and I finally feel like I've chipped the iceberg on what it is. This is part of it, too. This blog, and all of you reading it. It's crazy but true. It's just a tiny part of the something bigger I know I'm supposed to do with my life, one of the little steps that will hopefully lead to me making a huge difference. Bobby and I only went on one date before I was diagnosed, and he says that's no coincidence. He says we were meant to go through this together, to beat all this together and work together to make this a bigger purpose. I don't know, but it seems to make sense sometimes. And so, because I love an inter-active blog, :) I encourage all of you: be a part of this bigger thing with me. Tell everyone you know about this site, email anybody who knows anyone else. It's the only way that people will find out about the dangers of melanoma, about the insane easiness that can be prevention, about the risks to people that are just as young as you and me. Help me to be something bigger, help me to make this whole disease something that wasn't experienced in vain. It would mean a lot to me, and it could help so many others.
Thanks for the love,
-L
So we're sitting around talking about our respective high schools, and he asks why I didn't go to my 10 year reunion. I'll be honest, because I was honest with him, I know I've done a lot, but I feel like I haven't accomplished my "big thing" yet. That's what I told him, and I meant it. Do you ever feel that way? Like you were born to do something big, something great, and you just haven't done it yet?
You should've heard Bobby go on and on about how wrong it was for me to say that. He says the craziest things, said today that other people look at me the way I think about the nurses I come across. I don't know, I don't see it, but it's not the point. What is the point? Simply this: That it made me think a lot about life and about destiny and about what it's all about. What if THIS is what it's all about? Today, right now, this moment. Everything in my life- all I've learned, everyone I've known, mistakes made and paths taken - all of it lead up to this moment, all of it was because of what I'm supposed to do today. It's a mind-boggling thought, but it's not too big to wrap my brain around, and here's why: because part of me believes it. Part of me believes that my whole life has been leading up to where I am now, to this experience, to melanoma. It's the big thing I've been destined to do with my life. I've always known I was supposed to do something big, and I finally feel like I've chipped the iceberg on what it is. This is part of it, too. This blog, and all of you reading it. It's crazy but true. It's just a tiny part of the something bigger I know I'm supposed to do with my life, one of the little steps that will hopefully lead to me making a huge difference. Bobby and I only went on one date before I was diagnosed, and he says that's no coincidence. He says we were meant to go through this together, to beat all this together and work together to make this a bigger purpose. I don't know, but it seems to make sense sometimes. And so, because I love an inter-active blog, :) I encourage all of you: be a part of this bigger thing with me. Tell everyone you know about this site, email anybody who knows anyone else. It's the only way that people will find out about the dangers of melanoma, about the insane easiness that can be prevention, about the risks to people that are just as young as you and me. Help me to be something bigger, help me to make this whole disease something that wasn't experienced in vain. It would mean a lot to me, and it could help so many others.
Thanks for the love,
-L
Sunday, October 30, 2005
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.
-MM (LL)
p.s. I hate my voice on tape! I promise it's not like this in real life. Ok, maybe it is.
Friday, October 28, 2005
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.
Thursday, October 27, 2005
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.
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.
Wednesday, October 19, 2005
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.
Saturday, October 15, 2005
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.
Wednesday, October 12, 2005
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.
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.
Tuesday, October 11, 2005
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
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
Saturday, October 08, 2005
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.
Tuesday, October 04, 2005
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.
Tuesday, September 27, 2005
Free at Last
I woke up this morning and I was in my own bed with my own pillows in my own room. It's so good to be home. Of the last 44 days, I was in the hospital 38 of those. I tried to make the whole thing look easy, but I know it didn't. I tried hard to breeze through it just for the sake of not worrying about it, but honestly I can't tell you what it's like to know that I don't have to go back. This whole chemo-tour thing is finally over, the high dose treatments are done, and now I can take the rest of the 11 months at home. It sounds cheesy, but this last month in the hospital has totally changed me- it has made me think about so many things that I took for granted before all of this. We forget so easily the little things that we can do everyday until they're taken away. Today's big deal was just being able to walk outside and go get the mail. I couldn't do that for a month- couldn't just get up and go outside if I wanted to. And when I walked through my house today, it dawned on my how much sunlight there was in every room. You miss that in a hospital- you have a window but the halls and everywhere else is so closed off, all you get is flurescent light. In the midst of it, you don't think much about it, but it makes a huge difference, really. I can't complain so much, because my peeps made the month go by so smoothly- Mandy and Manda and Bobby and Tamara and Mom. I seriously don't know what I would've done without their love and entertainment and support. Especially Bobby- he came through for me on a daily basis, and I know he got tired of hanging out at the hospital everyday. But we really made the best of it and I'm almost shocked how much fun we had. I have been so lucky- SO LUCKY- to have all of you, and so lucky to have had the doctors that I've had. They've all been amazing to me and so kind. But most of all I feel thankful for the 4 million nurses I've come in contact with over the last month. They were all truly amazing. On a cancer floor, attitude is everything, and I can't tell you how many times Bobby and I would be sitting around goofing off and laughing and a nurse would say something about how long it had been since they'd heard laughter on that floor. It blew my mind to think about it, because laughing was sometimes the only thing that kept me from crying. Can you imagine losing your laugh? People lose hope when they hear the word cancer... I guess I always knew that, but seeing those other patients made it so real to me. I've been blessed- so blessed- with all of this. It's given me new vision into what I can do and what I can do for others, what a difference just a simple laugh can make. I encourage everyone to realize that and take action on it, to just be around someone who's lost that ability, just to remind them. It's crazy, this life, and every once in a while we get a chance to see it for what it really is. Today I feel like I woke up and my whole life was waiting for me. Like I have a brand new beginning that I can't wait to get started on. I don't want to waste one single second of it. I don't want to let one tiny piece get away from me without really living it up and enjoying it. And I just can't wait to get started.
Tuesday, September 20, 2005
Drunk on Benadryl
Hi-ho, Lori the cancer patient here. It’s been a good day today, ate a whole cheeseburger for lunch and my mom came up and brought homemade candy. Tammer had a minute to come by and she brought homemade soup and cake (Bobby ate it all), which is always a bonus. I finally got moved to the oncology floor, so I’m back among nurses that I know and love and who actually know what a PICC line is, unlike floor 7. These oncology nurses amaze me- they’re so upbeat and positive and it makes such a difference to be around people like that. Not to be negative, but if you ever get cancer, I don’t recommend floor 7. Anywho, scheduled to start the last (WOOO-HOOOO!) round of high-dose chemo very soon and then once the staph infection is under control, I get to go home and do the 3 times a week chemo injections there for the next 11 months. I can honestly say I never thought I’d be this excited about 11 months of injecting myself with anything besides heroine, but it’s true, kids. Being on this floor and around all these cancer patients, wow, do I feel so lucky to be where I am mentally and to not be suffering through the 3rd round of cancer treatment. And some of these people are even younger than me, and seem to be struggling more. God has a weird way of showing us how good things can be even in the strangest days. Wow, that was deep. Oh, well, it happens I guess. I’ll keep in touch and all you kids take care of you.
-L
-L
Saturday, September 17, 2005
You're Never Gonna Believe This
Seriously, though, can you believe this sh*t?! I was going to get to stay home for 10 days and take the i.v. antibiotic at home, and I end up being allergic to it. So I break out in hives from head to toe, and call my doctor, and he says to me, "You've got to go to the ER and get admitted, because your infection is too bad." So I've been out 2 full days, and I've got to go back. I have seriously not been so upset about anything that's happened as I am right now, knowing I've got to spend another week or 2 in the hospital. But I guess I'm getting it over with, and I'm going to try to stay positive. I'm just really disappointed, but it could be a lot worse. I'll holla. :(
Friday, September 16, 2005
Here's my Advice to You
It's beautiful, beautiful, beautiful to be home. Be thankful, kids, for all the little things you never think about, because nearly 3 weeks in the hospital will make you appreciate them. Good God, it's so good to be able to sleep all the way through the night, without those 2 am, 4 am and 6 am vitals checks, and the 3 am blood draws. And I can shower and change clothes without having to beg someone to come disconnect my I.V. I can walk outside or go to the store and pick whatevere I want to eat. Life is good, I tell you, and if I never have to spend the night in a hospital again, it will be too soon! Now we all know I still have a week left of chemo, but hopefully I can stay home a few days before that one has to take place.
I still have to take the Vancomyacin IV antibiotic, so a home health nurse came by today and showed me how to flush my lines and do the drip twice a day. The rash (did I tell y'all about the rash)- whoo, it's ugly, but the itching is getting better and we're assuming since I've still got it that it's probably from the antibiotics instead of the chemo. Hopefully, it will subside soon, too. Other than that, I'm amazed at the energy I have and I feel so great. A little braindead from 3 weeks of hospital food and 6 tv channells, but hopefully I can regrow some of those braincells this week. Hope everyone is good, and pray for no more hurricances, because that shit is not the best thing to watch on tv for 18 hours a day if you want to keep your mood up-
-L
Thursday, September 08, 2005
This is the A-Game
Let me first apologize to everybody out there that’s been waiting around for me to update this blog, but it’s been a really busy week, and by busy, of course, I mean I’ve been combing the hospital for people to harass. On a serious note, everything has been going well here. Came into the ER last Monday with a slight fever which turned out to be from an infection at the site of my last surgery. So, they decided to go ahead and do the chemo and load me up with antibiotics at the same time to fight both these nasty skanks in my body. Mandy flew in from San Diego and little Amanda came down from College Station, which made the time go by super fast, and of course little Bobby was on stand-by for regular and scheduled abuse. The nausea has been a little better this time, so I’m actually eating a few times a day, and my hair hasn’t seemed to fall out yet either, although I’m not gonna tell ya I couldn’t use the time off from shaving.
The antibiotics are really strong, and caused some kind of reaction that is strangely similar to being rolled in cornflakes and honey. The friends describe it more of a chicken-pox type rash. To each his own. Doc says I’ll be on the antibiotics for another couple of weeks or so, so I should be baking up some bread in no time… all the signs are pointing that direction. Also looks like I’m going to have to go back into surgery for the leg- it keeps filling up with fluid, which is why the infection started in the first place. They’ve drained it once already, but it’s going to have to be drained again soon. Good news is I have no feeling between my hip and my knee, so they can drain that main vein all they want as long as it gets me outta here sooner. Booby’s got some pics of the room, hopefully he can post some of them up. The atmosphere has made all the difference.
After a week of fighting my veins (the chemo is really bad on them) and resisting getting a port (which is a surgical procedure that puts and IV in your neck or chest) Dan the Man Chemo Nurse finally talked me into a PICC line, which has helped out significantly. It’s just a plastic tube that starts in my upper arm and ends in the anterior vena cava, but it makes IVs and blood draws like butter (no more painful sticks or digging for veins). We’ll try to get pics of the arms- heroine chic is SO chic! So anyway, I’m here for at least another 5 days so feel free to call, although the chemo has dropped my protein levels way low, which means I’m sleeping about 14 hours a day (not counting naps)- but I’d love to have the phone calls, I promise.
The antibiotics are really strong, and caused some kind of reaction that is strangely similar to being rolled in cornflakes and honey. The friends describe it more of a chicken-pox type rash. To each his own. Doc says I’ll be on the antibiotics for another couple of weeks or so, so I should be baking up some bread in no time… all the signs are pointing that direction. Also looks like I’m going to have to go back into surgery for the leg- it keeps filling up with fluid, which is why the infection started in the first place. They’ve drained it once already, but it’s going to have to be drained again soon. Good news is I have no feeling between my hip and my knee, so they can drain that main vein all they want as long as it gets me outta here sooner. Booby’s got some pics of the room, hopefully he can post some of them up. The atmosphere has made all the difference.
After a week of fighting my veins (the chemo is really bad on them) and resisting getting a port (which is a surgical procedure that puts and IV in your neck or chest) Dan the Man Chemo Nurse finally talked me into a PICC line, which has helped out significantly. It’s just a plastic tube that starts in my upper arm and ends in the anterior vena cava, but it makes IVs and blood draws like butter (no more painful sticks or digging for veins). We’ll try to get pics of the arms- heroine chic is SO chic! So anyway, I’m here for at least another 5 days so feel free to call, although the chemo has dropped my protein levels way low, which means I’m sleeping about 14 hours a day (not counting naps)- but I’d love to have the phone calls, I promise.
Saturday, August 27, 2005
Back In The Saddle Again
Hello all- Well, thought I'd check in briefly before next week. I'll be in the hospital receiving round 2 of the chemo treatment starting Monday or Tuesday and lasting 5 days. Let me tell you what they don't say about chemo, and that's that the drugs they give you to get you through the chemo is what actually makes you so crazy. They gave me steroids in the morning and at night to keep my system fighting, and I had a little more than 'roid rage. I freaked out Exorcist style, and besides the crying I did for 2 full days, I had that whole head spinning around issue, too. Luckily, it all turned out okay, and I'm rearing to go for another round. For those of you keeping up with what's going on through these blogs (both of you) feel free to call and check in... I'll have lots of time on my hands in the hospital. And thanks for all the thoughts and prayers going on out there, kiddos. Until next time, Amebos!
-L
Wednesday, August 24, 2005
World's Greatest Chemo Diet
Hey kids it's me, your favorite melanoma patient. I'm just checking in on y'all during my sabbatical from the hospital. I'm home for 5 days and then back to the hospital on Monday.
Chemo wasn't so bad, kinda weird and different from what I thought it would be. I can definitely tell you I'll never be a heroin addict. They were shooting me up between my toes by the time I left because the saline couldn't be pumped into me fast enough. It's all good tho, the nurses were very cool. I look MAD HOT in those gray hospital gowns.
Hospital food left something to be desired or was it just me? Everything has a funny taste to it even now that I'm home. I guess that's Chemo for you. It's been fun just trying to find food that tastes like it's supposed to. In the hospital the banana pudding tasted like fish. The ice tasted like dirt. The grapes tasted like hand lotion. Now I'm home and it's all fun and games trying to figure out what food is going to taste like. Nachos tasted like old lettuce. Waffles were spoiled milk. It's more fun than you think. Lots of foods taste like your favorite cleaning agents. 7-Up is like Liquid Plummer for instance. Good times.
For all of you asking, no I haven't lost any hair, just on the butt. I'll keep you posted on my Susan Pewter hair do when it happens.
Until next time America, you're my schmoopie-heads.
LL
Chemo wasn't so bad, kinda weird and different from what I thought it would be. I can definitely tell you I'll never be a heroin addict. They were shooting me up between my toes by the time I left because the saline couldn't be pumped into me fast enough. It's all good tho, the nurses were very cool. I look MAD HOT in those gray hospital gowns.
Hospital food left something to be desired or was it just me? Everything has a funny taste to it even now that I'm home. I guess that's Chemo for you. It's been fun just trying to find food that tastes like it's supposed to. In the hospital the banana pudding tasted like fish. The ice tasted like dirt. The grapes tasted like hand lotion. Now I'm home and it's all fun and games trying to figure out what food is going to taste like. Nachos tasted like old lettuce. Waffles were spoiled milk. It's more fun than you think. Lots of foods taste like your favorite cleaning agents. 7-Up is like Liquid Plummer for instance. Good times.
For all of you asking, no I haven't lost any hair, just on the butt. I'll keep you posted on my Susan Pewter hair do when it happens.
Until next time America, you're my schmoopie-heads.
LL
Thursday, August 18, 2005
A Better Vein, Or Is It Vain?
Guest reporter, Bobby here. Loribert Fistybuns, aka Miss Melanoma is kickin' it in the hospital sucking down Interferon like it was Iced tea on a hot Mississippi Mudbug festival night. She wanted me to throw a "Yo" to all her MM peeps (that's you).
For those that didn't know the hospital trip was coming don't fret, it was planned just a little bit of a secret.
Day 1 of treatment is in the can (movie talk) and she took it like a trooper, big surprise right? Nausea visited but was quickly squashed with something that sounded like Flem-en-luugee. I don't know what it is, but it worked and our girl got some mad hospital food. Mr. Headache visited too, but that may have been my fault as I was trying to hook up surround sound in her room.
Dr. Van Patten (Lori can correct his name later) is da man and puts Rodney Dangerfield's wardrobe from Caddyshack to shame. But he's the coolest cat in the litter box so you can't even think twice about making fun of him. My hick-e-fied relatives would throw a comment like "He's a good egg", I concur doctor.
Tamara, Stephen and the Fam have been visiting in regular intervals. Good eggs all around there also.
Internet access is non-existent at the hospital so if you've sent correspondence to Lori via email be patient (pun), Lori should be back home around Sun-Mon.
For now keep your prayers, Buddha rubbing, chicken beheadings coming. Whatever you've been doing so far it's working because she's on her way to becoming the Melanoma Poster Child.
I'll try to snap a pic of LL in her Tiara and upload.
Besos (from Lori),
Bobby
p.s. Did you know your body produces Interferon on its own? You did? You did not.
For those that didn't know the hospital trip was coming don't fret, it was planned just a little bit of a secret.
Day 1 of treatment is in the can (movie talk) and she took it like a trooper, big surprise right? Nausea visited but was quickly squashed with something that sounded like Flem-en-luugee. I don't know what it is, but it worked and our girl got some mad hospital food. Mr. Headache visited too, but that may have been my fault as I was trying to hook up surround sound in her room.
Dr. Van Patten (Lori can correct his name later) is da man and puts Rodney Dangerfield's wardrobe from Caddyshack to shame. But he's the coolest cat in the litter box so you can't even think twice about making fun of him. My hick-e-fied relatives would throw a comment like "He's a good egg", I concur doctor.
Tamara, Stephen and the Fam have been visiting in regular intervals. Good eggs all around there also.
Internet access is non-existent at the hospital so if you've sent correspondence to Lori via email be patient (pun), Lori should be back home around Sun-Mon.
For now keep your prayers, Buddha rubbing, chicken beheadings coming. Whatever you've been doing so far it's working because she's on her way to becoming the Melanoma Poster Child.
I'll try to snap a pic of LL in her Tiara and upload.
Besos (from Lori),
Bobby
p.s. Did you know your body produces Interferon on its own? You did? You did not.
Monday, August 15, 2005
10% Discount on Pedicures
So... tomorrow I go into the hospital to start treatment. I'd be lieing if I said I wasn't nervous, hence the 2 a.m. posting. It's been a great week of enjoying things I haven't had the opportunity to enjoy in a while: you know, beer, showers, wearing real shoes, walking without crutches. It's the simple things you take for granted everyday that mean the most when you get them back. I'm glad they're back.
I'm just going to stay busy and try to get some sleep and focus on other things until treatment... just staying focused on all the good stuff going on around me. I know everything is going to be awesome and this month in the hospital is going to go fast. Also want to say thanks to Kelly & Jeff who came down to see me today, Tammer and Lush for being themselves, and little Bobby for letting me drive him crazy, and of course to all the other friends that have been there and the unmentionables out there (you know who you are, Voldemort). I appreciate you all and know I can do this with your help.
I'm just going to stay busy and try to get some sleep and focus on other things until treatment... just staying focused on all the good stuff going on around me. I know everything is going to be awesome and this month in the hospital is going to go fast. Also want to say thanks to Kelly & Jeff who came down to see me today, Tammer and Lush for being themselves, and little Bobby for letting me drive him crazy, and of course to all the other friends that have been there and the unmentionables out there (you know who you are, Voldemort). I appreciate you all and know I can do this with your help.
Sunday, August 07, 2005
Snoochie Boochie
Well, it's been a good week. I've tried to slow down on the blogs because I don't wanna overwhelm my loyal fans. :) Anyway, long story short, the Jackson-Pratt tube in my stomach that led down to my leg and drained the lymphatic fluid out of my thigh came out (all foot and a half of it) while I was at the movies. It's okay, the movie sucked anyway. And they took the stitches out of my foot. So that means I'm really supposed to be taking it easy, which doesn't work out too well for me in general. The tube wasn't supposed to come out until next week, so the fluid is collecting in my leg, and it's not necessarily the most positive feeling. Not pain, just wierd and kinda uncomfortable. Anyway, it's not that bad, and it seems to be a lot better than everyone expected.
So next Sunday, I go into the hospital and start my first chemo (Interferon) treatment. I'm actually more nervous about the medi-port (that permanent IV thing they stick in your neck or chest) than the chemo. Is that wrong? I could use some company and phone calls, since I'll be in for a while, so if you're reading this, feel free to do so. The visits are $10 per half hour, or a four-hour block for $50. You can't afford me for the weekend. Slots are going fast, so call our operators NOW to reserve your good time. Neh. Anyway, hope to hear from you losers. Besos.
-L
Wednesday, August 03, 2005
Who's your mama?
Awesome doctor's visit... the sutures are still in the foot and I still have the drainage tube from the stomach, but no more staples. They took out sixty-something that started a little above my knee and went up my thigh into my abdomin. Yeah! One more step towards total recovery. And next week, I'll maybe get the rest of the foreign probes removed. :) Can't wait until they give me permission to walk. That'll be another great day.
Until next time, Batfriends...
-L
Sunday, July 31, 2005
The Bear!
Another little milestone- today I can make it up and down the stairs even without crutches, which means my dog gets to come home! She's great company, as she is the only one who sits in my room day in and day out with me. I know during Interferon, she'll probably have to go stay with friends or family again, but I'm really enjoying having her back for now, and I'm just going to concentrate on the things I have to be thankful for today.
Tuesday, July 26, 2005
I Fell flat on My Ass. No, literally.
So Lush and I go to the movies tonight and, of course, I'm still on my crutches. And he says to me on the way, "I hope you can crutch up stairs, because I'm not sitting on the front row." Let me just say now that the movie had already started and it was full of people as we made our way up the stairs, and I noticed that I was almost tripping a lot and that I was really tired. So my stupid ass makes it all the up to the seat, when I just drop and eat sh*t in front of everyone. On my way down, there was this collective gasp from the theater watching me. It was hysterical. It's been a long time since I've been embarrassed, but I was tonight. I think I started laughing before I even hit the ground. And then I just sat on the sticky floor laughing until Lush finally helped me up.
Truth be told, I didn't slip and fall. I didn't even know I was falling until I hit the ground. And I guess since it was so dark in the theater, I didn't realize that I was dizzy, not just clumsy. Evidently that bowl of cereal wasn't enough today. :) I'm such a doofus- I know I need to eat more, but when I'm not hungry, it's hard to make myself. But I'm going to have to because I can't be one of those people that always has to have someone looking out for them to do the right things. Lush watched me like a fucking hawk when I got home and it drove me nuts. What a freak.
Overall, hysterically funny night. hehehe
Truth be told, I didn't slip and fall. I didn't even know I was falling until I hit the ground. And I guess since it was so dark in the theater, I didn't realize that I was dizzy, not just clumsy. Evidently that bowl of cereal wasn't enough today. :) I'm such a doofus- I know I need to eat more, but when I'm not hungry, it's hard to make myself. But I'm going to have to because I can't be one of those people that always has to have someone looking out for them to do the right things. Lush watched me like a fucking hawk when I got home and it drove me nuts. What a freak.
Overall, hysterically funny night. hehehe
Monday, July 25, 2005
Lucky girl, world's shortest memoir (w/pic)
Went to the doctor's office again today, and no sutures, staples or tubes were removed, which is fine. Jody says the drainage needs to be down to <30 cc's a day before they can take the other 'nad. It's cool, though, and I got to read a great Lance Armstrong article in the waiting room, and in the elveator got to talk to two little white-haired ladies who thought having my toe cut off was the funniest thing ever, which made me laugh all the more. Went to the chapel after, as is tradition for Hammer and I, even though I was missing Hammer today. She's in St. Louis working, and everyone at the office asked for her. I love that office. I love my doctor and my nurses and the way they hook me up with meds and such. I love my friends and that they've made this so much easier for me, that they've carried me thru this. I love my crutches and my luck and how good life is. As I was going in to the restroom at the doctor's office, a lady was coming out that had had a double mastectomy. Why am I so lucky that this was just skin cancer and I just lost a toe? Why am I so lucky that even though I let this go on for years knowing I needed to check up on it, we still caught it in the early stages? I guess there's no answers, but I feel so blessed. So blessed and so lucky, and it just makes me want to share my luck with others and make sure I pay this forward.
-L
Sunday, July 24, 2005
Don't eat yellow snow
I'm fat today. Okay, maybe not any fatter than yesterday, but today I have PMS. And it kills me because I miss working out so bad and I can't do anything now (obviously, since I can't walk and I have tubes coming out of my stomach). I just keep telling myself it's a temporary situation, and it is, and that makes it all ok. No, seriously. Only thing that truly helps is that I'm honest with myself and everyone else is honest with me. I say, "Am I gaining weight?" And they say, "I think it's just that you're not working out so you're not toned anymore. But you can't try to lose weight right now, you've got to keep your strength up." So I trust that and just go with it and try not to think about it, and that works for me. (Plus, I avoid mirrors and overly honest people.) And I'm still happy with me, I just know that the things I have to work on have to be put on hold. It would help if I could wear a little skirt and high heels again, but you can sh*t in one hand and wish in the other and see which one stays full, I guess. That's cool, right?
Saturday, July 23, 2005
Keep on truckin (w/pic)
It's been a good weekend, and today Bobby painted my crutches bright pink, which just makes me feel great about having crutches. It's so funny how cute they are. Stuff like has made the whole experience so much easier to deal with, like the pink crutches and taking pictures of me on the Lark in Target. Good friends will take you far in cancer land.
Thursday, July 21, 2005
Fell off the Wagon
Got a call from a charter school this morning that wanted to interview me for an English Teacher position in Irving. A killer job that I know I can't take b/c I have to start Interferon-Alpha in a few weeks. It doesn't make me mad, it just hurts that I want to work SO BAD and it's an awesome position that is hanging in front of my nose. But everyone that I know that's taken Interferon said it would be impossible to work, especially the first few months. The first month alone is a high dose administered in the office for at least an hour. And the symptoms are supposed to be pretty severe.
In related news, a local woman suffered extreme fatigue and soreness today from the doctor's visit she had yesterday. Alot of the drainage that was coming out of that Jackson Pratt they removed is collected in my upper leg, abdomin, and pelvic area. It's not painful, it just makes me feel nauseaus (ok, there's no way that's spelled right) and miserable. Plus my side is so sore from her pulling it out, and my foot is swollen, so I'm totally reliant on my crutches today.
Whaaaa!
I'm such a little bi-otch sometime, crying like this, but I'm hoping just admitting all of this will help me move on.
I know I can handle it, it's just a couple of low blows today. I tell myself, hey, it's okay to feel sad and worn out like this when something happens; and, it's true. I'm working on being proactive and heading feeling depressed off at the pass. I miss stuff just like putting on normal clothes (I mean, the lymph nads are great, but I miss my cute clothes). But in all honesty, I know the good outweighs the bad by tons, and in the end, I will have learned from this and will be a better, stronger person for the journey.
Some call it insanity, I call it thinking. :)
On the upside, Hammer took me to Target today and I got to ride the Lark. That's quality stuff, that little scooter and me ridin through the store. It made being a crip all worth it!
:)
In related news, a local woman suffered extreme fatigue and soreness today from the doctor's visit she had yesterday. Alot of the drainage that was coming out of that Jackson Pratt they removed is collected in my upper leg, abdomin, and pelvic area. It's not painful, it just makes me feel nauseaus (ok, there's no way that's spelled right) and miserable. Plus my side is so sore from her pulling it out, and my foot is swollen, so I'm totally reliant on my crutches today.
Whaaaa!
I'm such a little bi-otch sometime, crying like this, but I'm hoping just admitting all of this will help me move on.
I know I can handle it, it's just a couple of low blows today. I tell myself, hey, it's okay to feel sad and worn out like this when something happens; and, it's true. I'm working on being proactive and heading feeling depressed off at the pass. I miss stuff just like putting on normal clothes (I mean, the lymph nads are great, but I miss my cute clothes). But in all honesty, I know the good outweighs the bad by tons, and in the end, I will have learned from this and will be a better, stronger person for the journey.
Some call it insanity, I call it thinking. :)
On the upside, Hammer took me to Target today and I got to ride the Lark. That's quality stuff, that little scooter and me ridin through the store. It made being a crip all worth it!
:)
Wednesday, July 20, 2005
More Pathology Reports (w/pic)
1st doctor's appointment after the surgery was today, and it was good to give the doctor and my nurse thank you's: they've been so unbelivably awesome to me. They removed one of the Jackson-Pratt drains which was good- it feels so much better now, even though Bobby almost passed out watching them take it out. Also they took off the dressing and I got to see the foot for the first time- it looks funny missing a toe, like I'm a mutant or something, but F**k IT- I think it looks cool.
It's so good to be over the operation and on the way to recovery. There's almost 60 staples from where they removed all my lymph nodes, and they're still not ready to come out, the staples that is. Maybe Monday. BUT THE BEST NEWS was the Pathology report - out of the 16 lymph nodes they removed, only ONE was positive for cancer. Amped! and can't even believe every day what a lucky girl I am!
Looking forward to meeting & seeing my oncologist and getting started on the interferon- alpha. I'M GONNA KNOCK THAT SHEE-ITE OUT! Some of the drug companies and non-profits seem like they might come through for grants on the meds, so I'm hoping to be good there. It's been a really good day.
Tuesday, July 19, 2005
A hard hit from Reality. Melanoma sucks donkey balls.
So I knew this day was coming... but my job called today and they're replacing me. As I said, I knew it was coming, but it's different when they really tell you. I loved my job. I loved helping people, meeting people, making people feel better. But Dr. Noor was so sweet, and said they would love to continue covering for me, but even after surgery, I still won't be able to return to work b/c I can't work around sick people while I'm doing the chemo treatment; it's just too risky. My white cell count will be so low, I'll be at risk for too many things, and it'll be life-threatening to even try.
I feel lucky to even know these doctors, and they continue still to do things for me like set me up with oncologists. And really what can I say except that I can only learn from this feeling that I have that I'm missing out on something I loved doing. Really loved doing. I guess the lesson is that I need to really enjoy moments when I am doing the things I LOVE to do, and I am glad to learn this lesson today. Every moment needs to be a THIS IS IT! moment, and that means even this moment I am in right now. This very moment, I am appreciating how lucky I've been thus far, and how much worse things could truly be.
I feel lucky to even know these doctors, and they continue still to do things for me like set me up with oncologists. And really what can I say except that I can only learn from this feeling that I have that I'm missing out on something I loved doing. Really loved doing. I guess the lesson is that I need to really enjoy moments when I am doing the things I LOVE to do, and I am glad to learn this lesson today. Every moment needs to be a THIS IS IT! moment, and that means even this moment I am in right now. This very moment, I am appreciating how lucky I've been thus far, and how much worse things could truly be.
Monday, July 18, 2005
Baby steps
Back in my room! Had to be camped out in the living room the last few days b/c I couldn't make it up the stairs. My foot feels awesome, so much better than I thought it would by this time, and I'm really feeling strong again. Having my privacy back and being able to do those little things like wash myself- THE SIMPLE THINGS that I took for granted in day to day life that I SO appreciate now. It makes me smile to think about how good I really have it.
Sunday, July 17, 2005
Womens' Race- Inspiration Inside (w/pic)
In every package, a marshmallow surprise!
Today was an adventure race in Austin that Hammer and Tina did in my honor. They called themselves "Team Little Toe." Makes me giggle! I feel funny being someone's reason for doing that sort of thing, but I'm not gonna tell you it's not cool that I have friends that will do that sort of thing for me. They brought home T-shirts and everything. Tina called to tell me that as they finished the race, the announcer was talking about me and about how many women were racing today to benefit cancer research.
I feel all warm and glowy inside.
It's been a good day.
I love Vicodin! (w/pic)
Don't really remember the last 2 days.... so there's that... and the pain pills- who loves them. The surgery seems to have be really successful, but I'm sore as hell. I can barely sit up, much less make it up the stairs, but it's a little better every day (at least, as far as I can remember, lol.) I find the harder i push my limits, the faster I make progress, so I'm doing just that. I'm glad it's over with, it had been a nightmare having to reschedule this thing over and over and now I'm good to go. A little anxious about what the pathology report will be, but I know either way, whether it comes back clear or if I've got melanoma in every lymph node, that I will deal with it the best I can and believe that everything is going to be okay. If that means I'm fighting it until then end, then so be it, and I don't have a problem with that. Bring that sh*t on.
Best thing about this surgery is they put two Jackson Pratt drainages on my stomach, which means I have these two tubes coming out of my stomach that lead to two little balls at the end of them. This may not seem cool at first, but when you see them, they're effin hysterical because they hang off of my stomach and look like I've got gonads hanging on me. My own sack! That's comedy, kids. I've enjoyed putting them in my shorts and telling people that I actually went in for a sex change operation. Tamara has nicknamed them the lymph nads. It cracks my ass up.
Tamara & Lush of course have been unbelievable, and I don't know where I'd be today without them. I mean that literally, because they've helped me thru all this a hundred different ways, and even given me a place to stay. I never have to worry what I'm gonna do about coming home or how I'll make it: they are always there, even through those times you never imagine you'll have, like those times I was trying to get off the toilet. :) Thank you God today for the opportunity to become friends with them 17 years ago, and of course for all the support and love I've gotten from everyone else I've met along the way.
Tuesday, July 12, 2005
Told my Mom today
Yeah, so I guess the title says it all. The most frustrating thing is that I've had a month to deal with all this, and so she's where I was in that first week of hell. It's hard for me to remember what that was like, and I know it's hard for her (it doesn't help that she's a nurse, either) ....... okay, it's really, really hard for her... but trying to comfort her and convince her that I'm okay is more draining than cancer itself. It's not her, really, it's just that I have to stay ahead of the game here, and that means that I can't let myself get blue and start questioning if I'm gonna live. Tammer of course stepped in and it seems to be going better already. Thank you God for my positive attitude and the humility of this entire situation.
Tuesday, June 28, 2005
My One Up
I miss running. I used to love the way I felt after a run, how de-stressed I felt and how the whole thing was a mental game when you boiled it down.
Tammer has been training for a marathon and is experiencing some severe burnout. It's no fun for her, I know. And I've been there. Today she was venting about it, and when she finished she just looked at me, waiting for a response. I smiled and said, "I have cancer."
She just said, "F**k." and left, coming back an hour later, all hot and sweaty. She goes, "Thanks, that was very motivating. I just did 7 miles." It made me laugh. This cancer thing is getting me out of alot of situations lately, and I got free ice cream for it the other day. :)
Tammer has been training for a marathon and is experiencing some severe burnout. It's no fun for her, I know. And I've been there. Today she was venting about it, and when she finished she just looked at me, waiting for a response. I smiled and said, "I have cancer."
She just said, "F**k." and left, coming back an hour later, all hot and sweaty. She goes, "Thanks, that was very motivating. I just did 7 miles." It made me laugh. This cancer thing is getting me out of alot of situations lately, and I got free ice cream for it the other day. :)
Tuesday, June 21, 2005
1st check-up & Report (w/GROSS pic)
Went to the dr. today, and Dr. Bietch and Jody were looking lovely as always.
They took the dressing off the foot for a first view at the graft, and whoo, doggy! that mo fo was swollen and infected. Ick! Take a look at this pic (gruesome, huh, I warn you!)
The two lymph nodes removed were tested and one came back positive for melanoma. This means I've been bumped up to a stage III. I guess I could be stressed about this, but to be honest with you, I'm not really upset about it. I'm convinced that it's all gravy in the navy. Wierd, I know, but true, this calm that's moved over me recently. Because mark my words, everything is going to be okay.
See intro page to MissMelanoma.com for reasons why. ;)
Tuesday, June 14, 2005
First Surgery
We interrupt this broadcast for some late breaking news:
First surgery was today, removed two lymph nodes from my inner thigh (right near the goods) and did a skin graft from the toe (and a 2 cm radius around it.) Not much more to say about this, kids, except the sh*t hurts. Only takes about 2 days to get over, though, so I'm straight. More info and pics coming up next week during 1st check up.
Film at 11.
First surgery was today, removed two lymph nodes from my inner thigh (right near the goods) and did a skin graft from the toe (and a 2 cm radius around it.) Not much more to say about this, kids, except the sh*t hurts. Only takes about 2 days to get over, though, so I'm straight. More info and pics coming up next week during 1st check up.
Film at 11.
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