Do you know Clare Oliver?

No tan is worth dying for. Clare Oliver's very personal and powerful message:

Catch it early!

Good piece I thought, and very informative on how skin cancer and melanoma spreads.
I plan on doing the drawing for the free stuff this week (or weekend)! Sorry, it's just that life is crazy now that school is back in session. For that reason, I'm still taking entries and will put your name in right up until the last moment.
Hope all is well with all of you!

-MM

A little perspective

Okay, yes, it's been a month since I posted. My bad and all that. But hey, it's summer. And although I'll try and make sure it's not another month till my next post, I think we should all just keep in mind that THIS is what I love about summer: living life is getting in the way of everything else!

I can't tell you what it's like to have this time to recoup- to get some real rest, to get my filthy room clean, to have the time to learn the very beginning steps of playing guitar, and to find out what other things I like to do when I've been threatened with my life not to run. But it's been fun having free time and de-stressing, and I can honestly say I'm enjoying everyday. It's going by fast, and I've been busy, but in the way that one likes to be busy. Just busy enough to stay sane. But wait, there's more- the good stuff just keeps on coming- I leave for San Diego on the 18th, and I'll be gone at LEAST 2 weeks. A full blown hiatus. I'm warning you now, I may not come back.

It's been pretty great since the surgery. I look at some of the pics from the hospital, and I realize that most of that stay I don't even remember. Who loves good drugs? But ugh- look how puffy and pale my face was! Talk about needing a makeover. Thanks, by the way, once again, to all of you who sent cards, flowers, prayers, and positive thoughts my way while I was there.

Once I was home, the first week went GREAT. I recovered way faster than I was thinking I would. Then, the next week, the lymphadema in my abdomen set in. It really hasn't been too bad since then, it was just that week getting used to all that fluid in a pretty condensed spot. It felt like a can of Coke under my skin, a pouch on my right side between my old scar and my new one, and the pressure and skin stretching to adjust was pretty uncomfortable. After that week, though, of having to take it easy and stay off my feet, I've had very little pain. Just some after I work out (in small doses) and minor discomfort at most the rest of the time. I am having to wear a compression hose around my abdomen, but I can't really complain. I mean, first of all, I don't have melanoma, and second, I look really fabulous in granny panties.

These summer days have obviously also given me reflection time, and I feel like I've started to recover from the emotional toll of the last 2 years. It's all kinda getting sorted through. It took a while for Bobby and I to really accept the good news without looking for an "except," but it seems now that, (at least I think) we really do understand that the pathology report is a reality. The illiac node was just "reactionary," inflamed from a staph infection I got almost 2 years ago. Negative for melanoma. And that means that, in a way, I've been given what essentially feels like a second shot at life. Not that the first one was ever really gone, but it just seemed to be living under a dark cloud. I can look back now and see that, and see that I put that cloud there and it was me that kept it there. I don't really know what to say about it except that, and to say that if I was in the same situation again, I would hope I could fend off the depression. In the midst of it, though, it's tough. And I'd never fault someone for feeling that way in the midst of so much uncertainty.

I've told this story probably 193 times since I've been out of the hospital, but I went in to the operating room knowing what my chances were of coming out of it with no melanoma. These last 2 years, I've gotten pretty used to the idea that bad news can be the reality. After hearing the prospects of surgery, I was really just hoping for the melanoma to be in the node, and not metastasized elsewhere; because the reality was, at least according to all the opinions I got, there was a fair chance of both. Having it elsewhere, well, that would've put me at stage IV, which is certainly no death sentence, but it is a progression of disease, and, just so you know, that's not what we're going for. Now, knowing it wasn't even melanoma to begin with, it's like looking at life through totally different eyes. Should I have had this kind of hope the whole time? Oh, yeah, definitely. But I didn't, and even when I tried, I couldn't. This NED, it's a gift. It's pretty incredible.

It took me forever to send out thank you cards (and post a blog, now that I think of it), and I couldn't figure out why I was dreading it so much, but when I finally sat down to do them I was filled with what I can only assume was anxiety. Why? I'm not sure, but I think it was just facing what could have been. I would like to say that I have learned through all this to face my own mortality with grace, but the truth is I'm not sure I wouldn't begrudge every moment of it if it came down to it. And yet, I don't see myself with the will to fight like Sarah did, either. She was incredible, the way she never gave up and kept looking for ways to fight the disease. Strange to see me as somewhere in between. It's out of my face now, giving me some breathing room, and yet I still feel like I need to see it there, in the distance. This is what so many cancer survivors call the gift of cancer- the awakening of our impermanence and therefore the overwhelming realization that moments are so precious, and we should do all we can to savor them fully. With all that in mind, I've made up my mind about a lot of things in my future, and I feel so much more confident and secure just being in my own skin. It's been a good month, people.

I'll spare you the sappy poem someone sent me, just know you should all be grateful. And, can I just say one more time, thankyouthankyouthankyou to every single soul that ever took the time to read this blog and think a positive thought for me. I am really so blessed.

-L

Jack Sparrow is my co-pirate

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

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

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

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

-MM

Could you come back in a few beers?

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

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

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

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

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

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

-L

It's probably nothing

I guess I'll get right to the point.

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

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

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

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

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

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

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

-L

When Good Germs go Bad

Well, it's cold season, and guess who's got one. Could be a lot worse, but I'm definately down for a few days. Called in sick 2 days in a row to work, so I know it's more serious that usual. Pretty normal, I suppose, though, for the first year back as a teacher. In fact, Friday, every 5th grade teacher was out sick except for 2. We have finally succumbed to the carrier monkeys that brought the germs upon us.

It's been a long time since I've been sick like this and it wasn't from chemo. I'm thinking it was when I had pneumonia in San Diego, actually, the last time. And that was much worse than this. Though the Robitussin gives me a nice flying :) feeling, I'm hoping today I can lay off of it so I can maybe get some work done. The good news is today is the first day I've woken up and my chest doesn't hurt. That's a good sign, I think, and I'm armed and dangerous with Puff's Plus this weekend.

I've missed the last couple of Gilda's club meetings due to feeling ill and just being so darned busy. I'm really hoping I can make next Thursday's group. I haven't really decided on this post-treatment support group, yet. I can't decide if I really want to stick with it or not, but since I've only given it one try, I'm definately gonna hit it a couple of more times to see how it goes. It's become pretty obvious that I need to do something, that I need to be in touch with all that's going on with me and my fears about cancer recurrence. I think this will be good outlet.

I'm sure, if you're like me, everytime you get sick after the CA diagnosis, you go into panic mode. I immediately began to worry that the cold would move into my chest, and my immune system wouldn't be able to fight it. This, friends, is called paranoia. Kinda like every time I get a headache that little voice goes, "OMG! Brain mets!"

This, I suppose, is the adjustment period to that "new normal" everyone talks about. I wish I could just get to that "new normal" and get it over with! Move on! Geezy Creezy! Build a bridge and get over it!

Anyway, that's today's rant. I'll fill you in later on my new derma. Now THAT's a good story.

-MM