My Story

In May 2005, months before I had turned 31 years old, I was working as a medical assistant in a not-for- profit clinic. I had moved to Dallas from San Diego the previous December to be with my dad who had terminal renal cell carcinoma. He past away in January and I decided to stay in Texas, near my family, for a while. I took the job at the clinic because I really loved the doctors that worked there- they really viewed their position as doctors as a means to serve society- and needed work, but mostly because I felt they were doing good things and I needed to be out of the house, keeping myself busy, not wallowing in grief.
The job did not offer insurance, but I did not plan on staying there long-term, so I wasn't worried about it. The doctors really took care of their nurses, though, and one day, while showing a nurse friend my pedicure, I asked a doc to take a look at a mole on my toe. The mole had been there my whole life, and had within the last year started to bleed. It sat square near the top of my smallest toe, but I was a runner, and ran about 25 miles a week, so I always assumed it was just irritated from that. Dr. Daya told me to go across the street to a dermatologist friend of his to have it removed. The derma took a look at it and said it was probably nothing to worry about, but needed to come off. It was perfectly symmetrical, had clear borders and normal color. I asked how much the lab fees would be because I was paying cash and not making great money. I also asked if it could be sent diagnostic lab I was familiar with, simply because I knew their prices. He said we would work it out but insisted on using a laboratory which specialized in derma cases. They gave me the number to an automated system and said the lab results would be ready in a week. I didn't think much of it.
A week later the doctor I was working for, Dr. Daya, called me into an exam room. I was a little freaked because the only reason I could conceive of him wanting to talk to me one-on-one was because I had done something wrong and was going to be in trouble. He was looking at the floor and very solemn, and told me he was sorry to be the one to tell me, but that I had cancer. "Nodular malignant melanoma," he said, "a very aggressive form of skin cancer." He said I needed to get immediate care or that I was in danger of dieing.

A month after the diagnosis, I finally found someone to who would see me even if I didn't have insurance. It took weeks of begging and searching and networking, but we finally found Dr. Beitch and Dr. Venkatessan. So, here's the short version:
May 2005- Diagnosed at Stage II.
June 2005- I went to an outpatient hospital and had the skin and some of the flesh around my toe removed, a skin graft taken from my thigh, and 3 lymph nodes from my groin to determine if the cancer had spread. Two weeks later the results came in that the borders around the skin left on my foot were positive for melanoma as well as 1 of the 3 lymph nodes. Now considered Stage IIIc.
July 2005- I had my smallest toe, part of my foot, and all 16 lymph nodes from my groin removed in outpatient surgery.
Outpatient surgery is no fun, especially if there is abdominal surgery involved. 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.
August 2005- I began high dose Interferon in a hospital. Interferon is a biological therapy/ immunotherapy for high risk patients. The treatment is a little dangerous and has pretty serious side effects so it required 5 day hospital stays for 4 weeks.
September 2005- The treatment lowers your ability to fight infection, and in early Sept I discovered that my leg was red and tender, and I had 102 fever. I had contracted a staph infection and had to stay another 3 weeks in the hospital fighting that.
October 2005- I was sent home and Rxed low dose Interferon to be self administed by injection for the next 11 months. I would be very sick and unable to work. Off and on through the year I was sick, jaudiced, and had heart palpitations and trouble remaining ambulatory. Spent some of the time in a wheel chair.
October 2006- Finished the treatments, but the treatment had caused a condition similiar to chronic fatigue syndrome. Spent a full year and a half combating those symptoms.
June 2007- Routine PET scan showed an inflamed inguinal node which doctors were concerned was melanoma. Node was removed but no evidence of disease found.
Present- The majority of the symptoms from Interferon have subsided. Currently NED (no evidence of disease.)

There is no remission for melanoma, because there is no cure, and, essentially, it's going to come back. There isn't even really a treatment for it. Even Interferon, which I took for a year, is rarely Rxed anymore because the results are so iffy (only a 6%-20% chance of staving off disease) and the side effects are so horrendous. Interleukin 2 (or IL-2) is also a treatment option, but has about the same results and even worse on the side effect side. I prefer quality of life to doing a treatment like that again. According to the American Cancer Society and most of the doctors I've seen over the last 3 years (and there have been a lot!) my chance of living to 2010 ranges from around 27% to around 52% and my chance of living to 2015 ranges from around 22% to around 37%. But, to quote Fight Club, "On a long enough timeline, the survival rate for everyone drops to zero." In a way, I'm lucky because at least I'm not going to work some shit job that I hate in the hopes of one day, after retirement or something, enjoying life. I enjoy it now. I live as fully as I can. And it's a good life.
There are some very hopeful treatments for melanoma in clinical trials now, such as vaccines. But until some kind of effective treatment comes out, I am not getting regular scans. My oncologist kinda said, "What's the point? There's no treatment anyway." and I agree. If I get scans every 6 months, I'll be a nervous wreck until the next one. So, I'm taking it as it is.
I'm hopeful about the future. But more importantly, I love the present. It's all we have, anyway.

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

GREAT NEWS!

Ok, we are stunned, speechless, literally.
Not only did the oncologist just come in to check on Lori, he also brought the path report.

NO MELANOMA!!!!!

When the oncologist did the PET scan, he was 99% sure it was melanoma. 1% baby, crazy odds, but we'll take 'em!

We don't know what to say or think. We didn't expect any news until Friday. We can't thank everyone enough for all of your prayers, thoughts and well wishes.

Stunned. Completely Stunned.
More to come...
Bobby

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

Thank God it's Doomsday

Thank God for my job. I say that because lately it's been the only time I don't obsess about whether we'll do radiation or surgery. Not that it matters, really. Why am I so concerned about this? In a way it feels silly. I mean, it's not like I'm sitting around waiting to find out if I have cancer or not. The truth is, I know it's there. And I feel like we'll do whatever it takes right now to get rid of this, and then continue to be vigilant and fight it whenever (did I say whenever, I meant IF ever) it comes back. When I say it like that, it seems like no big deal. And yet it's eating up my thoughts, always there in the back of my mind, nagging me. Like a big, "What IF?" The crazy thing is I've never felt like the what-ifs in life were worth pondering. Why waste that energy? Now, it feels like it's all I do. What if..... That's different for me, as a person who has lived her life fairly fearlessly up until now. I've never been much for limiting any activity due to fear, including things that I probably should've been more afraid of. Maybe I've been in denial this whole time, acting like I'm immortal, acting like nothing can hurt me, diving into the moment despite the little fear that was there. It's worked, though! I've always felt very alive, and now, here I am, realizing just how human and fragile I can be. And it's overwhelming, of course. I try to just be myself and at the same time grasp these new feelings. Sometimes I'm a basketcase. I cry at the drop of a hat. I cry in the bathroom at work. I've had the same headache for 3, 4 weeks now- the type of headache I have to take Vicodin to get relief from. But, it's a process. I'm working through it. I'm a healer, I'm healing. I'm a freakin' machine. A healing machine.
Bobby and I had an argument yesterday- ok, more like a disagreement- about vacationing this summer, and I swear I thought I was losing my mind. We had essentially decided that plans we've been making all year are not going to happen. I felt like we don't even know what we'll be doing in the next 5 years, how many times we'll be fighting cancer, when I'll have to be in the hospital, when we'll have another chance to just go and do. I threw a fit. Do you know how long it's been since I pulled a "I'm locking myself in my room" fit? High school at least, maybe even jr. high. Good God. I really did come near to a break down. And I finally just let myself cry and lose it and feel sorry for myself, and after about an hour of that, I felt better. Like way better. I don't know why I fight being so human like that, but it's ridiculous. If I would just accept my feelings for what they are, it'd be a whole lot easier to move on from there. Just a bit of advice for the rest of you Wonder women out there.
Thank God for Gilda's Club. I come full out on Thursday and say I'm happy my cancer is back- o.k., not happy, but you know, relieved- and almost everyone in the room said they knew how I felt! Where else can you get that? I don't think I could even pay a room of people to be that convincing.
Thank God for all of you. I really don't know what I would've done if I hadn't had so many of you writing me, calling me, posting comments. Emails full of advice. Emails that brought tears to my eyes. Emails from complete strangers that offered their home to me and old me their own stories that are so similar to mine. Beautiful stories of hope. I sincerely can not thank all of you enough. I can't list all 109 of you right now, but just know that you're loved.

More scans have been ordered. I'll let you know what they say. Thank you again for all that y'all do.

-MM

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

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