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

So many things to say

Well, my 5 day stay at the hospital has come to an end, and the news that seems so unlikely and too good to be true turns out to be real afterall. Free and clear. No melanoma.

It feels- amazing. Amazingly like it used to before I knew what a cancer diagnosis was like. Like I went and had my first mole removed and the path report was negative, and now I can go on with my life without the worry of all the stuff that coulda been. Like life never got scary. Amazing. I still tear up when I talk about it.

Now, I know that I'm still a survivor, and I still must be vigilant, and I know all that comes with that. I'm sure that in a few weeks or months when it's time for scans again, that I'll be scared until the results come back, and that I'll still panic over new moles or strange pigments or funny aches and pains. But I feel, today, like I've won the lottery and I've no limit to what I can do with the gift I've been given of "no evidence of disease." Free and clear.

And, yet, of course, I am hurt, too, by the fact that we have all lost Sarah. I simply can't believe she's gone.

Since February of this year, I have lost four people to cancer. I can't say how it hurts to write that.
Cancer is almost always a whirlwind of a mixture of the strangest feelings- joy at the good results, pain with the bad. Grieving the loss of all you had in your life (or at least you thought you had) before the diagnosis, and rejoicing in all you've learned and figured out about life since then- like the precious gift of a single moment. There's the joy of meeting the most amazing people on Earth, making friends across the country, drawing strength from their journeys- and- the flip side of that- is hearing that this stupid disease beat their spirit once and for all.

A few weeks ago, I wrote about Oscar, and I said that my first instinct when I thought about his death was a sense of relief that he was finally out of pain, out of the battle. At ease. And, after that feeling, it was simply a matter of getting past the missing him. I know that everyone that knew Sarah is probably feeling this same thing right now. But I can't tell you how much strength I drew from her advice. And I'm angry in the selfish way that she deserved so much more. I read her blog again and it's like I'm reading the story of a superhero, who put her private self out there so other people could learn. Amazing how she never gave up and she fought her way through the system to make sure she'd find a doctor who would treat her to fight melanoma till her last breath. And now that she's gone, it's stranger than ever.

So, again today, is the whirlwind. And I am just soaking it all up- the ache for Sarah and Derek and the joy of the gift that I know I have been given. It never makes sense, but I think to seek reasoning or consolation or an explanation is only inviting a conflict that I can't resolve.

Once again, no tidy wrap-up, but a quick petition to the higher power that is (or is not) ruling all this: thank you for my time knowing Sarah, thank you for lending Sarah to the world for a while, and thank you for the grace I've been offered, too.

-L

Our Blessed Lady of Surgery: The Patron Saint of No More Friggin' Melanoma

So surgery has been officially set, and I get a little time off from school before hand, so I'm fairly happy with that. Yes, it sucks that this is what my vacation fund is going to, and it sucks that this is what I'm doing the first part of this summer, but such is life, I suppose. And considering what's going on with all the people around me, I really feel like I should be counting my blessings.

Just in the last week or so have I come to the realization of just how scary this surgery is to me. Maybe I knew all along and just didn't want to think about it, but one night Bobby and I were sitting, watching tv, and it just hit me that I knew why it makes me so nervous that it's so quickly approaching. When I started to talk about it, I got butterflies and that adrenally feeling like I do just before they roll me into the operating room. In reality, I know that things will be a lot better than my last surgery, and that I'll be in the hospital where meds will be available and I'll be able to recover well. My last surgery was the removal of all my lymph nodes in my right groin. The incision started about half way down my thigh, crossed over just above my hip, and stopped about 3 inches above the hip bone. They also removed my little pinky toe and a small part of my foot at the same time. It was, how do you say?, intensely painful, especially since I didn't have insurance at the time and had to do a "day surgery," which basically meant that after I came to, I had to get the hee-haw outta there. That meant getting out of the bed and into a wheelchair, out of the wheelchair and into a car, out of the car and walking into the house. Ouch. Yes, there were pain meds, but nothing really prepares you for walking (or should I say attempting to walk? more like dragging myself on crutches) just hours after they staple (87 staples, by the way) you shut. A full 10 on the one-to-ten pain scale. I didn't even know that pain like that could exist. Forget childbirth, if that's what it's like.

So there's something to be thankful for right there, kids- I won't be doing THAT this time around. I plan to use that to my full advantage, too, and to bask in the gratitude. But yes, I am a bummed about having to do this again. I'm also pretty bummed about the fact that I was just starting a half-marathon training program, and am running 3 miles fairly effortlessly these days, and now that's going to be shot all to hell. I really wanted this summer to be an opportunity to get back in the habit of working out 5 days a week, and I know what this surgery means for all that. My doc is hopeful that maybe I can pick up bike riding a few weeks after (I need to contact Holly about this, by the way), so that I can be up and moving and squashing the chance of a blood clot, and I'm all for that, too. But running has always been a real passion of mine and I'm sad that it's not going to be around for a while. I'm really sad, actually. And let's just say it, I'm pissed, too. I'm pissed even though I know things could be so much worse for me, and yes, I'm struggling with that, too. But since I'm being real, I'll just break it down for you.

I'm only out from Interferon 8 months, which has been about enough time for me to get things back together, to get to a place where I feel physically and emotionally like I'm finally back on track. And it's taken me all this time just to get my body used to running again, even though I do struggle with lymphadema and such, it is so much better than it was, and with the right tools, I've found it's even manageable. Now, now that I'm here, guess what? It's back.

That's just so wrong. I just want to scream (at who, I'm not really sure- or what?- my body???) "Leave me alone! I just want to live my normal life!" And yes, this is the reality of life after cancer- a constant maintaining of one's self, a constant "on guard" status. In reality, there is no life after cancer, there is only life after diagnosis, which means you do scans and you check yourself and you see docs regulary and you just accept that it could one day manifest itself again. That becomes a reality of daily life, that cancer could be back any day. But until it recurrs, I guess you just fool yourself into thinking that you did your time and you can get on with your life again. And if it happens, you'll face whatever comes when you get to it. Which is what I did. But I don't want this. I want to be able to work out and have a summer vacation and spend time away from work without having to live my life around cancer. I don't want to spend 6 weeks recovering from surgery, and then another who knows how many weeks trying to build up some sort of physical endurance again. For that year on Interferon of forced coach-potatoe-hood, I just packed on the pounds, even though everyone around kept saying, "You barely eat anything. I don't understand how you're gaining weight." Alas, I am a medical marvel. Part of that was how my body reacted to Interferon, and part of that was an infamously low metabolism that picks up dramatically when I commit myself to working out regularly. Interferon pushing me into pre-menopausal world didn't help with that issue, either. And now, I am scared of weight gain happening again. I know that sounds silly in the big scope of things, but this is part of my health, too, and I am tired of having so little choice in what is going on with my body. I don't even want to think about having to start all over, trying to get back to a normal physical state. And this isn't even normal. This is the starting over. After surgery, that will be the starting over from the last starting over.

More trivial things to complain about, you say? Sure, I've got them! I don't want to give up my favorite hobby and learn another sport. I don't want all of this damn money I've worked so hard for to go to something I care so little about. Life is too damn short. I want to live each day to the fullest without being confined to a hospital room or a bed! I want life without staples, without surgery, without 6 weeks recovery time.

And yet, most of that life is gone. I still grieve for that life sometimes, though most days I've accepted this new life, and can see the benefits of it, too. Would I trade all I've learned if I had a chance at getting my old life back? Today, yes. Yet, once again I must acknowledge how lucky I am indeed, to have all that I have, to be dealing with one tiny lymph node instead of other things, to be where I am today, to have the support that surrounds me. And I've committed to living life fully, no matter my circumstances. I'll do everything I can to live as normally as possible while I'm recovering, and I'm pretty sure that won't be as bad as I'm making it out to be tonight.

That's all for now, kids. Tune in next week, same Bat-time, same Bat-channel.

And please don't forget to keep Sarah and Shannon in your thoughts and prayers.

-L

I know it's a little early for Christmas, butt......

the picture just makes me giggle!

A quick update, then I'll have to post more later. First, if you have tried to post a comment, you'll see that I'm now regulating them. Don't let that stop you from posting comments, though, because I need those words of advice and solice, and they get me through some tough times! Hold me!

It's just that, for one, I've gotten some spammy type comments this week in addition to some OTHER type comments that I'll address on another post. But trust me, they're interesting, and Jerry Springer-style scandalous. You'll want to check back in on these.

As far as the latest on the doc home front, the surgeon is now officially recommending surgery, and there is even some hope that this node isn't even melanoma! Which makes me, for one, EXTREMELY happy, even though at first I wouldn't let myself believe it for fear that it's too good to be true. Now, I'm jumping whole-heartily into the hopes that this is a reactive node, and not a melanoma node! Feel free to pray for that, too. So we're planning on taking the sucker out in June. This week, however, I have been talking to MDA and to another local dr's office (who comes highly recommended in the melanoma field) and we're getting some info as to what other experts suggest. With all this in mind, I am happy to report that I am feeling very, very positive. Very positive that I am getting opinions of experts and therefore will have the highest level of care. That's a big jab at Parkland, but nonetheless, just let me tell you, I feel good. And as soon as I hear anything else, you'll be the first to know!

In other news, I'm working with about 34 fifth graders who are antsy for summer and there's not a brain to share between them all!

-MM

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

And now, for something completely different

Your thoughts and comments and well wishes have brought me to tears more than once this week. Thank you so much, all of you, for your support. It has made all the difference while I waited for the results. I have been so touched and moved by your comments, and given such hope and strength by your words.

And now, for something completely different.

No, this is not my PET scan. But yes, I had a lymph node light up on my scan that my doc said he's "99.9% sure is melanoma." A little unsure as of today if they can do surgery, because the lymph node that he was originally concerned about was just scar tissue, and the lymph node that lit up is actually "very deep in the pelvis." So, if they can't do surgery, they'll do radiation. Good news is that he feels very confident that radiation will eradicate it. Did I spell that right? Oh, well.

If anyone has any experience with this, please write me. I'm a little confused as to whether this melanoma is spreading or if they just missed a node. I should've asked all this to the doc, but you know how this is when you first hear the news.

Thanks again to all of you. And thank you Carver for all your help and all the information that you provide so regularly.

-L