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...

Tuesday

I have another blog to write, but it'll be pretty intense (I think anyway) and I'm not ready to write it yet. But I'd be remiss if I posted it without having a brief post to honor and mourn the passing of my sister soldier Madalyn Castelucci. I mentioned her and her daughters previously. I went to school with Christine and Catherine. I had the pleasure of being good friends with Christine, who I met in freshmen year at Tottenville HS. I spent a lot of time at their house, it was such a joy to hang out there and John and I shared our first kiss at the New Year's Eve Party 1993.

When I first met her family Madalyn was going through a very difficult time and the last thing she needed was a house full of teenagers crowding her house and eating all her food. But we were always welcome and she always had smiles, hugs and kisses for us. No matter how hard she was working or what she was dealing with, she was the kindest most loving woman. It was not only like having a second mom but like having a second home. When I look at the photos we have from High school a TON of them are from Madalyn's house.

More recently we all reconnected thru Facebook and then at the Healing Masses at Our Lady Star of the Sea. I have such fun memories of Madalyn making faces at me during the funnier healing stories. Sharing our hatred of the mediport. And just the hugs and kisses in general. I think those were the I went to the Masses even when I was exhausted or nauseous from treatment or just didn't want to think I had cancer. Knowing she'd be there to make me smile and I would leave feeling invincible!

Madalyn lost her battle with Lung Cancer on Sept. 20, 2011, 8 months to the day after I was diagnosed. I don't say that to make this about me, it's just that Madalyn popped into my head the moment I was diagnosed. She kept me from losing my mind because I knew someone in the fight. I genuinely hoped we'd beat the odds and cross the finish line together. When John told me she was gone I looked at him like he was speaking a different language, what do you mean she's gone? She can't be gone!

She left this earth peacefully surrounded by her beautiful daughters. That brings me some comfort because two incredible women in my life have passed at home with their children by their side. But I'm still selfish and wish they were granted more time. But we're given what we're given and we can't appeal.

So here's to my sister soldier, I will take you with me to every treatment, I will wake up with you in my heart every morning, and I will continue to fight for both of us. I don't really know what else to do.

Yeah it's been a while...

Ok so I basically slept the Summer away. I didn't mean to, it sorta just happened. So I had radiation until June 13ish, not really sure of the last day exactly but I know my last steroid was June 24. I was pretty tired throughout radiation but Dr. Chan felt it was likely from the commute and steroid sleep disruptions, he was right. Because radiation tired didn't start until July, and people there is nothing in the world like radiation tired. Nothing. I have talked to people who went to work thru it all and I am in awe. Radiation kicked my ass and kicked it good. I slept for about 2 months straight, I didn't want to eat (yeah I know right!), I never needed to go to the bathroom, had zero desire for anything but sleep. And the sleep felt SO good. I don't know if it was the rest or the hibernation effect, but I hated being woken up. It created for quite a few standoffs with my family. For lots of reasons.

For one I think they genuinely didn't want to me to miss the entire Summer (which I did anyway) but I also think it was that this was the first time I looked like a cancer patient. I was bald and in bed and never got up. I imagine for them it was scary, but for me it was peaceful. That is until my mother would grab me by the ankles and drag my ass out of bed (which incidentally is how she used to get me out of bed as a teenager.) And I slept, I didn't just lay there or hide, I mean deep wonderful sleep. It felt amazing, but looking back I'm slightly embarrassed.

Now I know this was a side effect and I shouldn't technically feel shame for it, but the more I think about it the more I realize it wasn't just the side effect of radiation. I think there was a touch of agoraphobia too. Again when I say shame, I don't mean it literally, I know it's ok to feel what I felt. But I wish I had just recognized it instead of resisting looking at what was going on. I was just so resentful because I wanted to retreat into myself for a while and I didn't like being made to feel bad about that. But I know that isn't what my family was trying to do, they were concerned that I wasn't eating enough and that I might be falling into a depression.

Truth is I think a lot of it too was just not wanting to have to tough something out again. I toughed out chemo, I toughed out hospital stays, blood clot scares, a brain bleed, but this exhaustion...I just wanted to wallow in it. Enjoy the idea of having no responsibilities, feeling like I finally was getting rest.

John kept in touch with my oncologist and he became concerned. So I was sent for a blood tests to, among other things, see if my thyroid was functioning ok. I secretly wanted it to come back saying it was not working well so I could say "See, told you I didn't feel well! I'm tired for a reason!" But everything came back normal (except for my albumen which was a little low, so apparently I'd make a pretty crappy hard boiled egg). Then Dr. Krug insisted I go back on the steroid, I was furious! I didn't want to go back on it, I gained 30 lbs on it and my face changed too much. But by this point (mid-August) I had slept the entire Summer away, missed a million opportunities to go away with my husband and daughter, and missed the big summer of Amusement Parks that we had planned. So I reluctantly agreed to go back on it.

After a couple of weeks I feel like a new person. It killed me that the steroid worked, cause I really wanted to beat the exhaustion myself, but it simply wasn't happening. So I have to thank Dr. Krug and John for salvaging what was left of the Summer and for helping me feel like myself. Now I have to ween off of it again, but we have a plan to do it over two months. Dr. Krug kindly gave me leeway to do it on my schedule, with his guidelines. I appreciated that. So this coming Monday I'll step down from 2MG to 1MG. And then I'll step down to 0.5 MG. I actually think it'll work. I feel better and better each day.

On the other hand I can def feel a difference in my brain. I have trouble piecing together what people are saying sometimes and it takes me a minute to catch on to what the conversation is about. And if you don't give me explicit instructions now, you do it at your own peril.

There's another part to this new energy I'm feeling, that I'll explore in the next blog. I put that blog together in my head a while ago, but I can't bring myself to write it down right now, it became way too real recently. So it's just not the time for it yet.

As for updates, I had a CT scan this month, the first since June. I didn't expect to hear anything except for an update on the pesky blood clot, esp. since we haven't seen a change in any tumors since March 9th. So when Dr. Krug said, "Hey your scans look great, you've got some tumors that are shrinking, the one in the liver and the larger one in your right lung (the one that started it all, I call her Queen Momma Oddy). " The clot shrunk a little bit too. I was so stoked, I had NO expectations and instead I got great news. So the Tarceva is not only keeping things in check but it's working a little Overtime too! Monday was a great day. And then there was Tues.

Nothing good every happens on a Tuesday.

The Bravery Thing

So last night I was in bed thinking about when people say to me "You're so brave" and I was feeling like, "Gee, I don't feel brave." So I started to really mull it over. Most of the people who say that are people who have never had cancer or any other major illness (thankfully, and I hope all my lovies remain that way!!!) And I think I know why that is...

But there's another side to this too. The other cancer warriors out there, we are all very funny about the bravery thing. Like we never think in terms of stages, I mean if we hear someone is newly diagnosed we of course want them to be diagnosed early. BUT we don't think in terms of, "well you're Stage 1, Ha! That ain't nuthin!" Because being diagnosed with any illness, but cancer especially, is just plain devastating! And it affects you in so many ways, physically, mentally, emotionally, spiritually. It can paralyze you, depress you, hell it can hurt like a son of a bitch!

But I do notice that when we warriors hear about someone who went thru a longer treatment, or a more intense regimen or a surgery that we didn't have to have, we always think, "Now there's a warrior!" I said that to a friend Joseph, who I went to school with from 5th-12th grade, who went through 60 brain radiation treatments last year. I only had 14, by treatment 7, I was so happy to be halfway thru I considered dancing on the machine! Also my ears are so blistered that I can only imagine that by treatment 40 Joe's ears just burst flames. So I told him how struck I was by his toughness and he wrote back most eloquently "i'm no different than anyone else in the struggle. I refused to let it interfere in my life."

So I've figured it out, why we don't feel brave or special or tough... It's because we really have no choice in the matter, if you know what I mean. A firefighter, a police officer, a soldier, they have a choice. Their uniform doesn't physically compel them to enter a burning building or jump into a fire fight. They choose to do it. That my friends is brave! People who stand up for the right thing when everyone else is against them, that's brave.

When you're told you'll never be cancer free but we can "extend you're life", the "choice" to fight like hell isn't brave, it's logical. Like hell yeah I'm taking chemo, can we double it? What if I yell at the cancer will that help? Does Sloan have any Voodoo priestesses on payroll? I have a daughter who needs me, I have a husband I love and can't balance a damn check book and can barely boil water, they'll starve without me!

I didn't even think, I just put one foot in front of the other. And the truth is, if god forbid you find yourself in this position, you will too. It's a survival instinct, it's that part of you that will yell, hell no I won't go! It's there, we probably use it all the time without even realizing it.

As for the sense of humor thing, look, I'm already sick, why be depressed as well? You'll be surprised at the fact that you can laugh about stuff, but you can. Go to Cafe Press and type in "chemo" or "cancer" and see all the t-shirts that people created. Cancer patients, who said, fuck it, I need to laugh. Mel Brooks was once asked by 60 minutes why he made so many movies that feature Hitler. And he said it was because during the war he hated him so much he wanted to have some sort of revenge on him and he realized the best revenge was to get people to laugh at the muthafucker! I think that's genius!

Who loves ya baby

Well washing behind my ears has never been so easy. And you don't realize how much your hair keeps the water from the shower from flooding into your ears until you have none.

So I've been waiting FOREVER to lose my hair. The Sloan chemo nurses said it would most likely just thin from the Cispatin (the 1 hour, kidney drowning, ovary frying chemo drip) but I had read all over the internet about people who lost their hair from it, so I chopped it off in Jan just waiting and waiting and waiting. And it never fell out (not that I'm complaining), so I psyched myself up months earlier than I needed to.

When I went for my first radiation consultation they said, it's not a matter of if, just when, they felt by the end of the 2nd or 3rd week it would start to fall out. They were dead on, by the middle of the 3rd week my hair started really thinning and if I wore a white shirt, I also wore my hair follicles for the world to see. And then Wed. June 8th, I was having my morning bowl of Kashi Go Lean Crunch before heading to the Sloan cafeteria for second breakfast. And I got a spoon full of hair, yum! And in the car on the way to Sloan every time I ran my fingers thru my hair huge chunks came out.

So on the way home from radiation that day, we stopped to pick up Sophia at my in-laws and we were talking and laughing. Then we head home, and while I'm sitting on my love seat sitting in front of my facebook page, I run my hand thru my hair and an ENORMOUS chunk pops out. And I say, I guess this is it.

So my dad says, well that's what I did, I just pulled it out. I said really? For some reason that sounded like fun. Apparently I was the only one who felt that way, Dad went home, Mom took Sophia into the Den to watch Madagascar and John was like, you are not going into the bathroom to rip out your hair. At first I was like "oh ok" and then I said "WTF, it's my fucking head, if I wanna rip the hair out I will dammit!" So I went into the bathroom, took the trash bin and put it in the sink and I went to town.

First of all you have to understand, the hair literally popped out. No pain, no tugging, I just grabbed a chunk, tugged and it came out. Now the bulk of it fell out on the very top of my head. Kinda like a Monk's do. But the hair along my forehead line and along my ears and neck would not budge. So I had a bald middle which was SO attractive. But it was oddly liberating. Especially since it was crazy hot that day, my head was literally cooling off as I tugged. Then after about 20 mins, all the hair that was coming out was out and I was left with a spikey ring around my head. If you can imagine those hats they sell with fake hair around the rim, imagine that without the hat and that's what my head looked like.

So I grabbed John's buzzer and took the rest off. So it looked very crew cuttish. And then I had to show Sophia. I didn't know what to expect, but they nurse told us to tell her that I got a hair cut. So I said, "Sophia you want to see mommy's new haircut? I have no hair now." And she was totally cool with it. She asked me if it came out in the shower and I told her no, that mommy cut it (I didn't want her to fear the shower and worry her hair would "fall out") and that was it. She rubbed my head and went back to watching her movie.

Then I took pics and posted them on Facebook. My poor mother-in-law was so confused, she called and said "you were just here, what happened?!".

But I still looked more of Marine than a cancer patient, honestly, I looked like I could start some serious shit. The only thing I'm missing are visible tattoos. And I think I might have freaked out my backyard neighbors (everyone on my block knows about me and they have all been wonderful, I have some pretty cool neighbors yo!). But the week before I had run into my neighbor in the back and we were talking about our kids and stuff. Then a week later I go out to put out the trash, at maybe 4pm, and she is in her backyard and says "I hope we're not making too much noise back here?" I was like "Huh?" and she said "The kids are making water balloons." and I said "Sounds like a great time to me!" So I wonder if she was like, I hope that skinhead doesn't attack my children! HA!

I got tired of the roughness of the fuzz, and I took out my venus razor a few days later and shaved it. My scalp reminded me of when we pet those stingrays on our honeymoon. Smooth and Velvety. Seriously, I could not stop rubbing it. I am obsessed with my head. It's so freeing. Between scarves, wigs and plain ass bald, I like being bald the best. I feel cooler (temp wise, not attitude wise) and my head has an interesting shape. I do wear scarves when I'm out though. I feel like being bald is very jarring for people and it is now the same as wearing a sign that says "I have cancer". So I mostly wear it for other people. But I do love scarves too, it's just that after a while they get hot and I usually pull em off.

I've worn two of my wigs so far. We went out to dinner for John's birthday and I wore my good one that the American Cancer Society very generously gave me. BTW that was awesome. I met my dad's ACS peeps (he's an ACS navigator) and his friend Fran took us downstairs at their HQ, took out a mirror and a huge bin of wigs. And we tried a dozen on, it was SO cool. We figured out which color I looked best in and which style. Plus Fran was ACE at styling them so I learned so much about how to care for them and how to make them look perfect!

Today I took my pink one out for a whirl. I got quite a few looks on the drive to my Brother-in-Law's. It was cute, but got itchy after a while and I just yanked it off. But I lasted pretty long in it. Plus I ordered one of those cotton caps that they recommend for patients to wear underneath, but I haven't received them yet. So I think I'll get more into the wig thing soon.

What I love about scarves though is they have kind of a pirate vibe to then, which I totally love!

The best way to describe not having hair is, most of the time you don't feel any different, but then you turn on the AC or you feel a nice breeze and it feels like your hair is sopping wet and it's Feb. Sometimes I'll have what I call, "hair phantom pains", where I find myself trying to tuck non-existent hair locks behind my ears.

The other crazy thing is that the steroid (which I'm still on, I was supposed to stop it cold turkey the last day of radiation but I got a massive headache so the doc decided we should step down even slower, they had thought I had stepped down enough since I was down to 2mg, but apparently that wasn't enough for me). Anyway, the steroid causes you to grow hair where women don't usually enjoy growing hair, like your chin or neck. But the steroid did me one better, it also grew on my nose and from the corner of my eye down my cheek. Like how is that even normal, men do not have hairlines from their fricken eyes!!! And then there was the cisplatin, it did nothing to my head, BUT it kept the hair on my legs from growing. So I didn't have to shave the entire time I was on chemo. Which was crazy cool, but the rest of me looked like Robin Williams ala The Fisher King.

So that's the deal with the hair. I'm surprisingly cool with it. I will photograph all the wigs and post them on facebook eventually. Plus I have a whole new scarf collection thanks to my cousin Cindy who dropped off all of her headwraps, that she washed in the most divine smelling detergent! I literally just inhale the pile of them whenever I pass them in my bedroom.

On a side note I went to Essentials in the Mall the other day to pick up hair gel for John and a new brush for my wigs. And I swear the teenager at the counter, who was lovely, was thinking to herself "She knows she has no hair right?"

Also I have this really bizarre habit that when I play Uno on the iPad I have to rub my head before I made my move. I really have no idea why that is...

P.S. John just read this over and insists he did not freak out over me pulling out my hair. He also wants everyone to know that he thinks it was very nice of him to help me shave the back of my neck. To which I responded, yes, you are a true humanitarian. Now he hates me. Hehe!