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

Getting the most from Sunscreen

Interesting!
http://tinyurl.com/ywsysz

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

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

The ultimate teacher

This blog will be a little scattered- a bit here and there- a tad all over the place. I'm just really letting my thoughts romp about. Think James Joyce and stream of consciousness.
______________________________________________________
There are two parts of me today. The first is the side that knows that Oscar is finally at peace.

Then there's the other side.
My therapist asked me on Saturday, "How do you feel now that it's over?" My first instinct is less than happy, bordering on what I can only reasonably describe as rage, but I just stuff it and I say the truth: I feel a sense of relief that he is finally out of pain. And now it is a matter of getting past the missing him. A matter of dealing with the fact that a good person that I genuinely cared about is gone. I think of my dad and how that dent will always be there. Getting past the missing them is the worst part. And that is what I can only assume takes a lifetime.

I guess I don't need to say that I wasn't as close to Oscar as many people in my group were. I keep feeling the need to justify why it hurt so bad to see him go. It's ridiculous, really- I think all of us from the group are asking ourselves why it hurt so bad. Of course, it is sad that such a wonderful person is gone, but we all seemed so emotionally tied to his death, when, really, we've all been surrounded by death before. But this one hit home. We're all exploring these emotions in us, thinking of Oscar, wondering what has been stirred in us.

It brings me to a quote I read this week: "Conflict comes when you seek consolation, forgetfullness, explanations, and illusions."

The other day we were talking about how the first stages of diagnosis always coincide with, "Why me?" And then one day, it just clicks, and the question instead becomes, "Why not me?" There is no consolation in figuring out why. We've done nothing to deserve it any more than any other person on the planet. And so the consolation comes from within, in the understanding that it happens. It happens to good people and to bad people, young and old, strong and weak. It just happens.

And such as it is with death, the ultimate teacher. It happens. The illusion that we here in the West like to live under is that death is some distant and foreign thing that's not going to happen to us. We're too young, too healthy, too (insert other adjective here). But death is a reality, and when we are slapped with it, how can I say this except: it rocks our world. That's where the "new normal" comes in. The new normal is life in the face of death. The elephant in the room that most cancer survivors are willing to acknowledge and everone else chooses to ignore is the reality of death. Once someone comes to grips with their own mortality, a lot of the dillusions about life and about ourselves are lost. There is pain with the prospect of our lack of existance, but at the same time the huge question begins to arise: Why do we pretend death's not going to happen to us?

Which brings me back to my therapist Saturday, who asked: why deal with death now? Why not wait until it is time to deal with it?

When, exactly, I asked him, is it time to deal with it?

When we're dying, he said.

Here's what I don't get: can we not learn to live life in the face of death? Does the prospect of it not give us greater insight into what we really want? And need? I have come to believe, as I have seen the face of death, that an acceptance of death leads to a more vivid life. Whether I can live that more vivid life, I am not sure yet. I am not so sure that I am capable of being that big of a person. But I know, none the less, that it is true.

There has been an outpouring among my Gilda's group since Oscar's passing, a string of emails to each other thanking the others for what they've provided and what is appreciated in each of them. It sort of blows my mind that a group of people can chose to go through something like this with each other, something that I've never really seen or experienced in my short life. And yet the group has pulled through it- has chosen to bond and meld together and be there for another human when all of our first instincts are to protect our own well-being. I, personally, had to fight with myself constantly- forcing myself to do what I really wanted to do when all the instincts were screaming to run in the opposite direction. This has much more to do with me and my history than it does to Oscar or my group- it's just how I've gotten by in rougher times. And I fight it still, even now. I can feel the tension inside me pleading not to get too close to people, not to allow myself to trust and not to get attached and not to put faith in them, that when it all goes down I won't be able to take the pain. But becoming bigger and better person sometimes means ignoring those instincts and learning to put yourself out there and love in spite of fear. It means that risks like this could pay off or not, but either way, a person comes out on the other side richer from the experience and proud of the involvement and wiser from the struggle. Isn't that what death teaches us, anyway?

This group has brought about a sort of renewal in me. I see, in the midst of this pain, such an amazing spirit of friendship that has astounded and overwhelmed me. And I see the individuals, too- people that I wouldn't even know or be friends with typically- I am in awe of their spirit, their strength, their faith, their tenacity, their character. In the last week, even saying the word "friendship" has literally brought tears to my eyes. It makes me cry the way people cry at weddings, who are bewildered by the beauty and stunned by the flow of emotions. And I can only assume it is because I simply cannot believe how I've been so blessed by this. So blessed to fall into this circle. I am at a loss to even describe it, but you just have to trust me how it feels to be so overcome by a sense that I am surrounded by a group of people that get me, people genuinely and deeply feel the same pain I am experiencing, people that would look me in the eye hours before death, people that are simply THERE- there when I just need to hear their voices or their stories, there when I am searching for a familiar face like a child lost among strangers, there to listen and to prod and to urge and to care.

I wanted to end this blog with some sort of conclusion about all this. But tonight I don't have it.
Maybe someday soon. Maybe it will become clear.

For now, though, I know one good thing. And in light of Oscar's death, I think that's a pretty big good thing to see.

-L