The Tribe has Spoken

So every October as we all jump higher and higher to prove that we hate cancer, particularly breast, by buying products that are pink for the month, there's usually an article or two to discuss the term "survivor" as it is applied to cancer patients. We used to apply it to people who "beat" the disease, but lately I have seen it applied to those of us living with it as well.

I never understood why people objected to use of the word. I mean didn't people who fought the disease actually survive something. It's one of the few times that word actually applies (please, please tell me you've seen the episode of Curb your Enthusiasm when Colby keeps trying to compete with the Holocaust Survivor at dinner, it's hilarious) Also aren't we just trying to keep positive? Like when we say "cancer free", it's not technically true or at least there's no way to know if it's actually true, but it sounds awesome so we use it when someone's cancer can no longer be detected. I remember when my dad got his "cancer free" bill of health and I was so excited. And then my former friend (who shall remain nameless) said "he'll never be cancer free Jaime", not "that's great news" not "you must be so relieved". But she also decided to tell me how I caused my own miscarriages so why I expected comfort I'll never know. But that's why she's a former friend...

Anywho, if you are not familiar with this argument it is usually coming from people who have lost loved ones to the disease. Now it didn't bother me in the beginning because I gladly will call someone who beat the disease a survivor. And no one I know who has beaten it would ever think that they beat it because they were somehow superior to someone who did not. We patients don't even like to compare stages, let alone survival statistics.

Frankly, I used to think it was a petty argument, until you find yourself typing the words "lost their battle with ____ cancer" several times and then you realize it just doesn't sound right. They didn't lose, they fought like hell. Medicine lost, the doctors lost, the world lost, but not my friend. It does kind of imply that there is some responsibility on the part of the patient. It may not seem that way to some people (I never saw it that way before now), but after a while I can see how you start to feel resentful. It's like the stop smoking commercials in NYC. I love that NYC is using tough tactics to get people to stop smoking. I think tobacco companies are evil incarnate, they are the only product allowed in the US market that if used properly, will kill you.

But when you have lung cancer these commercials are like torture. First off it can feel like it's saying "well if you have lung cancer, don't come crying to me, you did it to yourself". Then there's the one that says "dying from smoking is never painless", um thanks. And now the new one, "the only thing worse than being diagnosed with lung cancer is having to tell your kids" with the young mother. That one makes me want to throw a shoe at my TV (I will not, because it's brand new, I should have thrown it at the old one, that might have made me feel better).

I just read an article (that I can't find to reproduce here) about a woman who is BRCA-1+, lost her mom and fought breast cancer herself. Her parents are also Holocaust survivors but her dad says "I was in concentration camp". She asked him why he chose those exact words and not "I was in a concentration camp" or "I am a holocaust survivor". And he responds, "because it was through no action of my own, it was just luck." He chooses his vocabulary to reflect that he is in no way alone in his suffering. The author uses the term "succumb to the disease" when she describes her mother's death. I think I like it better than "lost the battle". What does lose mean anyway? I know the people who are left behind have lost, they lost someone they loved. But what about us, the actual patient, what do we lose (yes I know you lose your life) but I mean what do we personally lose? Dignity? No. Strength? No. Courage? No.

Am I making any sense? I don't feel like I am. But I guess ultimately truth is it sucks no matter what vocabulary you use.

But I have to say one thing, even though it is a battle it hasn't felt much like one yet. In fact being a patient can feel rather passive, esp. when you are waiting rooms all the time. But after talking today with Laura, I think maybe making a shift to a battle mode is what is in order? We'll see. Of course I could really go for a nice nap too... ;)

"Since then 'tis centuries, and yet each Feels shorter than the day I first surmised the horses' heads Were toward eternity." or This Shit is Real

Because I could not stop for Death,
He kindly stopped for me;
The carriage held but just ourselves
And Immortality.

And Immortality.

Ok I didn't repeat the last line for effect. As hopefully many of you know most of Emily Dickinson's Poems can be sung to the melody of Gilligan's Island. I should be ashamed to admit this but that's what led me to discover that Dickinson is my favorite poet. Go ahead try it, it works on just about all of them. (I almost wrote go to the library and check her poems out, who the hell does that anymore besides me and my parents?) But I must say, besides enjoying her poems, Ms. Dickinson is the first person to ever get me to consider death, it actually wasn't the above poem that first got me, it was "I heard a fly before I died". The idea that hearing is the last sense to fade upon your death, it kinda stuck with me.

And then there was John Donne, Death Be Not Proud which I only discovered because I had to read the book of the same name by John Gunther. Gunther took Donne's poem about how Death has no "power" over man because of man's faith in god, and took it further to say that Pride is not in the death itself but what you do with the time you have left even when it's tough. He chronicles his young son's battle with brain cancer, his fight, and his and his wife's heartache with such honesty, it was a book that never left me. However there is a film that really blew my mind called Wit, by Mike Nichols, starring Emma Thomson, Audra McDonald and Christopher Lloyd. It is an HBO production that is based on the 1998 Pulitzer Prize Winning Play.

It explores the last days of a Univ. Professor of John Donne's poetry (Thomson) and her willingness to help in the fight and to contribute to the understanding of her cancer by allowing herself to be a guinea pig for a high profile doctor/scientist (Lloyd). However thru the painful side effects and the kindness of her nurse (McDonald), she soon starts to examine her own history of showing little compassion and valuing academics over the human condition. And finally she's confronted with having to chose to be a DNR or allow herself to be used to the death for science no matter how painful. It's truly an epic battle in her mind that she must come to terms with. But the most extraordinary moment of the film is when Her professor, her mentor comes to visit. The mentor realizes that she's arrived too late and comes now to comfort a friend in her final moments than to cheer up an old colleague under the weather. In that moment she chooses instead of reciting John Donne, she will instead read her former protege The Runaway Bunny, the book she purchased her great grandchild earlier that day. Because at that moment maternal comfort trumped all else.

So what is up with all this huh? Well death lately has been reminding me that it's in the wings. I'm not really sure if there's a reason for it necessarily, other than "that's life" I suppose. But I don't want to miss any messages either. So, you ask, how has death been nudging me? Well...

First it was the report about the new drug they discovered for the ALK gene mutation that looks absolutely amazing. (My doc says I was tested for it already, in case you're wondering, plus I have my own gene mutation and drug combo, so I'm super lucky, believe me). Now I've mentioned before that I've instituted a media blackout of sorts for myself. I haven't looked up anything lung cancer related in general terms, if I search the internet it's for specific things like "whole brain radiation side effects" or "tarceva skin rash" etc... The reason is because I know the stats for Stage IV lung cancer suck, esp. with brain mets. But I had made some assumptions about what those numbers might be and it turns out I was being rather optimistic. So I'm watching this report about the ALK drug and what flashes on the screen? A lovely little statistic: "Only 1% of Stage IV lung cancer patients are still alive in 5 years." I actually thought it was about 20%. John said that statistic is for ALK lung cancer patients, in general Stage IV lung Cancer patients have a 10% chance of being alive in 5 years. So I suppose that makes me feel 9% better.

But needless to say that number was jarring. I remember desperately wanting a number when I was at Sloan that day in January, and I'm so happy the young doctor didn't give me one. Cause I have to say that number ABC World News flashed blows. Now I have to say it didn't depress me as much as it shocked me. And I think it might have shocked me right out of bed. Cause not long after that I headed with my family to Hershey, PA and had some fun with my daughter. And I've been on a number of small trips since.

Then death nudged me again. At Hershey Park, we were waiting for Sophia to get on a ride that was for little ones her age. John was putting her in the car when I realized that guy running the ride kept looking at me. Now when you're a fat bald chick, you get LOTS of looks. Adults either give you a sorry "aww poor girl" frown or a smile that lets you know they are either a survivor or the relative of one. Teenagers are the cutest they try their best not to look and if they are behind the counter when you are buying something, you can almost see them saying "bald, bald, bald, bald, bald, bald, bald, bald, bald, bald, bald, bald, bald" in their heads! Kids just flat out look much to their parents' horror. But it's cool, and if they ask I tell them I cut it, because I don't want them to be afraid that any medicine they take will make their hair fall out. They are afraid enough of docs as it is.

But this man kept looking at me, in an odd sort of way. Finally he came up to me and pointed to his chest to where my mediport scar is. And he said "you have a..." "mediport, yeah", "my wife had one. How is your fight going?" "Well it's going, but you know I'm doing ok, how's your wife?" And then he broke down. His wife died of Breast Cancer within the last year, I wish I could tell you more, but he was difficult to understand. All I know is my scar struck him and the poor thing started to cry. He asked if he could hug me and I just threw my arms around him. He had to get back to his job but he told me his name (which my radiation brain has since forgotten) in case I needed anything at the park and then he told me his wife's name was Jill. After the ride I went back to him and told him I'd take Jill with me to every treatment, to every apt., to every fund raiser. He hugged me again and thanked me for being kind to him. And then he asked if it was breast cancer and I told him no, lung. I think the bald head, the mediport and me being a woman, all together just hit him very hard and I conjured up his wife for him. His pain was so raw and awful I wished there was something I could do, but how do you comfort a young widower? I mean if this guy was over 45 I'd be surprised. It hit me and John pretty hard, but honestly my pain was really for him. My dad found the experience odd (he talked to him as well, and told him he had breast cancer too, but mostly he just wanted to know why this strange man was hugging his daughter). But we both felt that at that moment, we did the best we could for this man. We are a sucky community to be apart of, but we're a community and it is incumbent upon us to be there when one of us is in need, even if it's someone we'll never see again.

And then of course there was the passing of Madalyn. This wasn't death nudging me, this was death betraying me. The most overwhelming thought I had after being devastated for her daughters, was how could you take her! How! I felt nothing but anger at that moment, you can take that woman on World News Tonight or the wife of some guy I've never met, but Madalyn? How is that ok? Like the family of Jill and the woman on the news (who was a young mom like me) don't/didn't have those exact same questions.

As usual I have no idea where this is going. I guess the thing is I've contemplated my own death, we all have, but now I'm realizing there are things I don't have the answers for. Things I need to have the answers for. Like I don't really want to be buried, I think I want to be cremated, but I don't know if it's the buried thing or the embalmed thing that I object to. But I also thought I'd have a lot longer to think about it. I also realized that I'll have to lose weight, I can't be a fat bloated corpse, plus I've only looked good in one dress in my lifetime and that's my wedding dress. So I figure I have to lose weight about 60 lbs to look good at my own funeral. Does Weight Watchers have a plan for that? My Mother in-law, Mother and Husband don't like that joke. I think it's hilarious.

Also, do I keep my 401K or so should we cash it in and use it to go away and shit? I always said I wanted an open bar at my wake, now do I really? Do I want people to drink enough to be honest about me? And how do I pull it off? I should probably have this all in place so no one has to worry about the logistics right? The one thing all this death stuff has made me realize is, dying is the easy part. Worrying about that moment doesn't make any sense, I mean we all have to face it sooner or later. It's everyone who gets left behind, they have it hardest. If meeting that man in Hershey has taught me anything, it's that of everyone involved in this, I essentially get off the easiest.

So now I have to get other things in order too, letters to Sophia and other loved ones. But Sophia esp. I mean there are so many things she'll need me for, what if I don't get my miracle and I face those 1% odds, how do I let her know all the things I want her to? I think of that mom from Oprah in the 80's and 90's who died of breast cancer but made her daughter thousands of hours of video tapes so her daughter had all these words of wisdom and love when she was gone. I remember thinking that was so cheesy as a teenager, now I realize that is the most selfless gesture. I know this because the idea of writing Sophia a letter makes me physically ill, the idea of sitting in front of a Video camera, no way. I can't do it. Trust me this was a woman who loved her daughter. There's also some little ones who I'd like to do something for cause I hate the idea that they won't remember me.

How narcissistic is that? Worrying about who will and won't remember me? Look I am not depressed about this. Thrilled? No, but I'm not sitting here sobbing while I write or anything. It's just that death went from that thing I only confront on episodes of Bones and Law & Order, to thinking about it practically. I had been ignoring it for so long and then it smacked me around a bit. I'm not sure why. I mean it got me out of bed initially, but the rest of it, I don't know. Maybe it's like Quiqueg in Moby Dick, he can't relax until he makes out his Will and buys his coffin. Once those things are settled, he can just go about life again. So if I get the answers to these questions, will I put death back on the back burner?

I don't know, I just know death has been hanging around my head a bit and I know the people closest to me aren't happy about that. But I just don't think talking about the realities of this is the same as giving up on the idea of a miracle. Look the whole point of getting whole brain radiation, besides getting off of the steroid, is also to give me a shot at clinical trials. I know anything can happen, I know stage IV cancer survivors who beat the odds (even stage IV lung cancers). I am as positive as ever, I feel pretty darn good and I have been more myself these last 6 weeks than the entire 3 months of Summer combined. I've even been working out at the Y! But there's no denying there's been some nudging, I'm curious what I'll do in response. I'll keep ya posted.

Weird Dreams to Share

I began this Blog in June but abandoned it out of laziness. I'm going to leave the original opening paragraph. But to update you, the original steroid step down did not go as planned, and then I crashed and slept most of the Summer away. I have since gone back on the steroid (1/2 the dose I was taking most of the year) and it has really helped give me my brain and energy back. I will begin a new step down program but I'll be going off of it VERY slowly. Anyway, I hope you find this entry entertaining! Enjoy:

Ok so Monday is the last Radiation session AND the last day I take the steroid. I can't tell you how jazzed I am about these two facts. But I'm super duper jazzed about the steroid thing. So for one I can stop eating like a hobbit (breakfast, second breakfast, lunch, onesies...) and hopefully my face will tone down a bit (it's mad swollen!) I will miss the frantic to-do list making and the crazy urges I have to organize the hell out of my house! Seriously I found the cure for Hoarding, it's called dexamethasone. Why are doctors not using this? My house has never been in this kind of order before.

But one thing I will not miss is the insomnia and crazy ass dreams I've had. But you know now, I'm totally going to share some of the best ones with you.

1. Tom Hanks and I were spies, trying to sneak into Thomson/Reuters (which wasn't actually TR) and we failed to do our jobs properly. So our boss, George Clooney, fired Tom Hanks and teamed up with me. As we were trying to sneak back into the building George suggested that we get back together. I turned him down, I told him I was too fat for him, so you have to admit, I was only thinking of his career. Which is apparently movie star / spy boss.

Even in my dreams I'm fat, WTF?

2. I went to a club in NYC that allows you to do or witness ANYTHING you want and it was known for its intense experiences. And what horrible debauchery did the majority of the "people" in my subconscious want to do at this club? Yes you guessed it, watching Drew Carey design Pink Furniture. Is there nothing my dirty mind can't dream up?

3. We travelled thru the Tundra of Canada to get to Traverse City, MI (see footnote). When we got there my brother's girlfriend's parents had gotten into a car accident and tried to pin it on me and their daughter. Now they really aren't the type to get into an accident and then try to pin it on anyone, let alone their own daughter (or me, esp. since I don't drive, pinning it on my would be pretty stupid). But we tried to settle the whole thing at Cracker Barrel (naturally). And they were like, Ok we'll stop trying to blame you for the vehicular manslaughter. Woke up before I could order biscuits and gravy.

4. Dr. Dre and I were trying to find kids to join our Glee Club. If you need more set up than this for it to be funny, you clearly don't know me.

5. Freddy Kruger was giving me laundry tips that I could use on the Today Show since I was now the new co-host. I thought that was very nice of him. Now Freddy and I go way back. Nightmare on Elm Street is the first horror movie I ever saw (at my very first sleepover no less). And I couldn't sleep for about 16 years after seeing it (I so wish I was exaggerating! but I have no ability to watch or enjoy scary movies) So since I was a kid I had loads of nightmares starring him. Then when I was a preteen I read that if you have lots of nightmares you should try lucid dreaming. That means when you're in the middle of a bad dream try to tell yourself, hey this is just a dream I can change anything I want. Believe it or not it works. So when Freddy would try to attack me on the way home from I.S. 75, I'd turn around and be like "Dude, you're hanging out in Huguenot? Really? How fucking lame are you?" And now we trade recipes and laundry tips, isn't that lovely?

And finally:

Footnote: Traverse City, Michigan. Ok so when most couples do a destination wedding they choose Jamaica or Fiji or Las Vegas. Not our family, we do St. Mary's Pennsylvania or Virginia Beach. Paradise is overrated. But then there's Traverse City, MI. Beautiful city, breathtaking views of Lake Michigan AND fucking freezing in August. I remember when we pulled into the city and I saw people on the Lake I was like, yeah sweet. Then we got out of the car and I froze my balls off! Now the groom had warned us, so I was prepared clothing wise, just not emotionally. Why were those people on the Lake? Didn't they know they could die of exposure? Is Alaska this cold in August? Anyway for the record the Bride was stunning, the groom was adorable and I slept with both the DJ and a Groomsman! I'll let you puzzle that one out yourself...