Sunday, February 27, 2011

The Anchovies, In the Dining Room, with the Poison

Ok, so for the second time in my life anchovies have sent me to the hospital. And yet I don't hold this against them. Meanwhile I will never touch Cadburry chocolate again and that was a stomach flu, Cadburry bore no responsibility. But it was the last thing I ate and I have a sick memory of it. Now it could easily have been the broccoli and I have no problem vilifying broccoli, but I'm pretty sure it was the anchovies.

Wednesday night we had dinner at my house, there were five of us. Four of us partook in a dish of sauteed broccoli and anchovies. Don't knock it, it was delicious. Fortunately my mother-in-law didn't eat it and while she was spared what happened next, she ended up holding down the fort while the rest of us all went to hell. And that was not easy plus my house broke her toe. No really, it did.

I got hit first, because I have no immune system. Well it's just suppressed right now cause of the chemo. So when my body realized it had bacteria in it, I got violently ill. Well not violently ...yet, just suddenly. It was shocking, but I felt great for about 20 min later so I was like, ok no big deal. My parents get here and we call the onc on call at Sloan. He says, "it's not the chemo, it's probably just something she ate. Keep up her fluids. But if she can't stop you get her to the ER."

So I'm laying down and for the next hour every time my father walks into the room I go running to the bathroom to throw my guts up. I am finding this rather funny actually. Until I start to suspect that this might not be over as quickly as I thought. So I say, ok let's head to the ER. I am thinking to myself, I'm sure I'll benefit from a nice bag of saline. Had I made that decision just 20 minutes later my family would have had to call an ambulance.

I can not adequately explain what happened to my body between getting in the car and arriving at the ER. I am trying to figure out exactly how much to put on here because as honest as I enjoy being, I also don't want to horrify my audience. But the truth is that for the next 12 hours I had no control over my body, it did things I couldn't stop, medicine couldn't stop. I just had to wait until my body was hydrated and enough of the bacteria was out of me that I could some regain some control over my being.

I really don't know how I remained conscious through all of it, it was pretty insane. Think of the worst stomach bug you've ever had, multiply it by 1000 and you might come close to this. What made the experience so much worse was that the nurse that was assigned to me, who was about 12 years old, and couldn't wait to tell me that her name was also Jaime, thought our situation was "really gross" and literally did nothing to help us.

Now you guys know I love nurses, I think that are gods and goddesses and I have mad love and respect for them. So anything I say about this young woman is entirely about her and her alone. Now I don't know if it was because she was young or new, but she abandoned me and my husband to fend for ourselves for about 7 hours. It took her forever to give me an IV and then when she realized I had a port was going to find someone who can access it (that would have required I wait at least another hour) and I screamed at her, forget the port just give me the damn fluid.

She puts in my IV and it's awkward and she lectures me that I have to keep my arm perfectly straight. I am violently ill, my body is retching horribly but I need to understand that my arm has to stay perfectly straight. She is also in no rush to give me any of the meds the doctor is screaming that I need, cause he's really worried for me. But as much as he understands the situation, since he sent us someone who has no desire to carry out his orders, it is a fucking nightmare. My husband dealt with things that "in sickness and in health" totally doesn't cover. And in case you're wondering we did complain and holler and yelled and no one cared. It was insanity, and when we found out much later that they were worried that I had a parasite that they thought I might be in danger of spreading to others, it was even more shocking. The fact that we were left in charge, yeah we would have killed everyone in that part of the ER.

As all of this is happening we find out that now Sophia is throwing up back at home. So John now has to worry that what is happening to me is about to happen to his daughter. Fortunately she just threw up and she seems ok.

Finally there's a shift change and we meet Christine. Christine is horrified at my situation, she pushes the doc to give me more meds, she takes incredible care of me and she gets us everything we need. It is on her watch that I finally stabilize and I start to think, ok I'm going to get through this. By morning I feel great and foolishly think I'm on the other side, but it turns out I was only through phase 1, phase 2 would begin in about 24 hours. But since they had no intention of letting me go home, I was in the right place for that to happen.

John leaves to go home and get some sleep and my parents take over. John intended to come back after sleeping for a while but when he gets home and both he and his father get hit by the food poisoning. So now it's official, this isn't a bug it was something the 4 of us ate. John can't come back so my parents do an 18 hour shift with me while John is home battling the same demon and cleaning up after his daughter who is now sick again because after all she has it too. And my poor father-in-law, who ate the biggest portion, is pretty damn sick. The only difference between him and me is that he has more blood cells in his arsenal.

So after almost 24 hours in the ER I get moved to a holding area because there is no room available in the place upstairs that I need to go. Well they put me in the weirdest room I've ever seen. It has a metal door, nothing in it and this strange screen on the wall. I have no idea what this screen is for, it's not a TV and it can't be one of the things to look at x-rays because you'd need a ladder to reach it. I just keep waiting for the Exalted One to appear to tell me that the jewel on my hand is about to light up. It's a freaky fucking room yo.

So everyone has decided that the port would be better than the crappy IV, so they have to find the one nurse qualified to do it. In the insanity I forgot her name, but I love this woman. She has to try two needles because it's unclear which gauge the port needed, but I honestly didn't feel a thing. Plus as she's accessing the port (which is an oddly intimate experience, she's hovering over my right boob and I have to turn my head so as to not breath in her direction because the field must be sterile.) she says, "ok this room is crazy, let's get you a better one".

She gets me off the table and walks with her arm around me to this nice room with an awesome bed! I never give up this bed for the rest of my stay. When I wake up the next day, phase 2 has begun. Phase 2 is annoying, but I'll take it over phase 1. But it is frustrating me. No one will give me any meds and I'd like someone to explain why there are 3 drugs fighting my cancer, but I can only take one Imodium to stop my crippling diarrhea. I mean really? Maybe instead of ACS cancer walks, we need to raise more money in the fight to stop loose stool? WTF?

I'm furious. I tell John on Thurs. afternoon I'm done with Staten Island University Hospital, call Sloan. John is like, ok calm down and I snap. "Look if they don't help me soon, I'm putting on a diaper and I'm heading to Sloan. If that fucking astronaut can make it from Texas to Cape Canaveral, I can make it to the Upper East Side." The nurse (a new one, I've gone thru a million shifts at this point) hears me and calls for the doc. I am just tired of being told I'm so sick I have to stay in the hospital but not sick enough to have any medication. I finally see a doc who explains to me what they are waiting for. Basically the doctor tells me that the tool in the fight will be a nonstop diet of rice. And I should start to feel better by Sunday. I was like, what? Rice? Really?

But the doctor is nice and disarms me and I can't use my Astronaut line again. Grrr. The other problem that I'm having is that every doc that sees me is utterly fascinated by my cancer diagnosis. So they'll ask me "when did you symptoms start?" and I'll say "well I started throwing up at 9 pm Wed" and they'd say "oh no I mean the cancer symptoms?" I was really starting to get pissed off. Except for that one kid who came in to ask me some background questions. He was nice about it, felt bad for intruding and he really was afraid that if he upset me my Uncle Louis, who was standing behind him, was going to snap his neck. His questions I answered, I found him adorable.

On Friday night after waiting forever for an actual hospital room, they tell us that they are closing the holding ward and I have to go back to the ER. And they want to put me in the hallway. I am on isolation to protect myself and others, but it's ok to put me back in the ER. My family loses their minds and start screaming that I will sign myself out. So they get me a room in the ER and everyone who is stuck in a hallway wants to know what I the hell is wrong with the girl with the purple face who got someone thrown out of their room. My mother-in-law gets on the phone and gets us a room upstairs. While waiting for transport, Adam, the PA from the day I was diagnosed finds out I'm in the ER and comes running in.

"You look fantastic!!!" he yells. I love this guy, he's wonderful, he's caring, he's freaking out that I've been here for 2 days and still no room. He wants to know everything that Sloan is doing and he is happy. He's positive and he makes me feel good. I want to hug the hell out of him. And then I finally get to my room.

When I get upstairs I hear a nurse yell "Who the hell is this?" and I'm thinking great, I'm here 4 seconds and I'm already pissing everyone off. They literally shove me into an isolation room (my bed was too big it takes this adorable transporter and my dad to practically smash the door in to get the bed to fit). The nurses come to meet me and are totally confused as to why I am arriving with my own supplies. Since we had been left on our own John had scavenged for all the things we needed to survive and then while we were in holding we got nurses to steal stuff for us too. No really we did. The new nurse Christine (completely new Christine, not ER Christine) is like, "these are from ICU how the heck did ya get em?" I was like "look, it's a war zone down there."

The nurses are lovely and finally explain to me how vital it was for me to be isolated from people. And everyone who comes into my room has to wear a yellow smock and I have to have my own BP cuff and thermometer. And I'm def not allowed to leave the room. I sit with Christine for an hour going over my entire situation, all my drugs (that I have with me at all times and Christine can not believe that in 48 hours no pharmacist has gone thru these meds to make sure I didn't smuggle any narcotics in), my linens haven't been changed, they don't understand why no one wants to give me Imodium. I am furious because it's clear to me that I belonged here all along. These women know what they are doing, they run a tight ship, they are in charge of an entire ward of cancer patients who they need to care for and protect. And now I'm one of them and they are just shocked.

They are totally baffled that we want to make the bed and that my mother and husband are entirely prepared to take care of me. Then they start going over with me what is written in my chart and I understand why nothing has been making sense to me for two days. The doctors who are seeing me are telling me one thing and then writing the opposite on my chart. There were things that simply weren't true. And soon under the care of the women of the cancer ward, everything starts to get straightened out and that's when phase 2 starts to subside. This is not a coincidence. I spend two nights in my isolation room waiting for all of my toxicity tests to come back. My mom and I spend two nights bonding over PBS and a awesome Hoarders marathon. Mom: "OMG these people are nuts!"

Saturday night I find out I'm not toxic and all the precautions are over. I finally turn a corner and we're all agreed I can go home Sunday morning. I can't sleep cause all I can think about is playing with Sophia. I haven't seen her since Wednesday night and I hate that she's been sick without me. All I can think about is all the ways I want to hug her.

Well it's all over now and I'm totally fine. It was just a crazy ass 4 days. And I really did fold myself in half with the bed, fortunately John missed it, but I did kinda lay there jackknifed for a second laughing my ass off. My other favorite moment was the other night when my dad asked "what did the doctor say today?", "he said my magnesium was a little low, but he wasn't worried." Dad: "You know what has magnesium? Prunes." He wasn't joking, he actually thought I should eat a couple of prunes.

As bad as my week was, my husband's was a thousand times worse. Cause he had to deal with his wife, daughter and himself battling food poisoning. All while on his vacation and his reward is that he gets to go back to work tomorrow morning, bright and early. Ugh! And for the record after all he did this week, if he goes the rest of his life unable to sort mail, it's ok. I actually should never get mad at him again, but that's not gonna happen. But I figure I'll post it here so there's a record of it he can refer to and say "You see, you even said it yourself Jaime." He deserves it.

Hospital Highlights

So I spent the last 4 days in the hospital with food poisoning, I'll post more about that later. But if you're going to go through something with or without your immune system, opt to do it with your immune system, you don't want to know what happens to your body when you don't.

I got home a couple of hours ago, I just want to hug my daughter, eat, sleep and watch the Oscars.

But here are some highlights to hold you over:

1. I accidentally folded myself in half with my adjustable bed.

2. Doctor: Why are you here?
Me: I have food poisoning.
Doctor: What did you eat?
Me: Broccoli and Anchovies.
Doctor: Broccoli and Anchovies, no wonder you're in the hospital who the hell eats that? Chocolate. Chocolate never put anyone in the hospital.

3. Dad: Why don't you use coal tar shampoo for your itchy scalp.
Me: Cause they linked coal tar to cancer.
Dad: But you already have cancer so you may as well use it.

Wednesday, February 23, 2011

That damn other shoe

Ok so it's been a rough couple of days and I have no one to blame but myself. That's what I get for being a judgemental bitch. So it turns out this face this is quite painful. At it's worst it feels like my face is on fire and some is taking a box cutter to my nose. It's also crazy gross to look at I have no idea how anyone looks in my direction right now. And it bleeds, which is just lovely.

But again, ahead of myself. So Sunday and Monday I spent most of the day in bed sleeping. I enjoyed this because for the first time in weeks I am actually sleeping. It feels like sleep, I'm having stupid dreams. I cheated on Top Chef and tried to sleep with Tom Collichio to stay in the game. I have no culinary or sexual skills to have made qualifying for the show or staying on the show a possibility. But sleeping was really lovely. But it did mean two days of not engaging in life for a while, but it was a trade off I was willing to make.

The poor trade off I made however was the hydration, by sleeping so much during the day I wasn't drinking as much as I needed and it was a problem come Tuesday. So I wake up Tues. morning raring to go, I decide I will not spend it in bed. Two days of hibernation was enough. I head downstairs and grab myself a yogurt from the fridge. And guess what happens? My head goes light and my hearing goes. I decide to keep this to myself, I'm convinced I can battle vasovagal on my own. It's personal, I hate this stupid thing, I want to stare it down.

So I eat breakfast and sure enough standing up is something I can't do for long. So I hit the water hard and battle for 2 hours. Battle means, I sit on the couch and drink more water than is humanly possible to consume and hope that after a while I can just stand up to take a shower. I finally make my shower attempt and it's a no go. The tinnitus (my cue that I am about to pass out if I don't get to at least a sitting position) is bad. So now I have to let the cat out of the bag. I lay down on the couch and all parties are informed. My parents arrive and the discussion of whether or not to call the doctor begins. My poor mother in law is standing over me with glass in hand so I can take alternate sips of Gatorade and water. Really in my head I have hundreds of snap shots like this, they are going in a folder called "this is what love looks like in action".

I think that since this is happening at the same point into this chemo round as it did in round 1 makes me feel like, it's ok, I'll just keep drinking and if I don't get better I'll head to the ER. But for now I feel much better than I did on maple syrup day, so I think I got this. So after a couple of hours of hydration and trying to make each other laugh while I lie on my ass, I finally take a shower.

I was fine until I get out and I pat my face and it's bleeding and all of a sudden I'm calling for a chair. I sit sopping wet with my mom realizing it's my face that's triggering this. You see one of the triggers of vasovagal syncope is the sight of blood. So now I'm just one big fucking loser. My face is actually grossing me out, literally. What an ass!

Once I realize this though I am better able to remain upright. But I still feel pathetic. I ended the day with Chinese food because greasy udon seemed like the logical answer to a day like this.

But that's what I get for deciding how other people should feel about their ordeal. I feel pretty damn cruddy right now, mostly hypocritical. Which only makes me human I know, but it's still cruddy. But one thing I've been reading is that the worse your rash is the better the medicine is believed to be working. So I'm trying to look at it as the epic battle between my cancer and tarceva is playing out on my face. I'll take it believe me, I want to be cancer free more, trust me on this. Plus I have a dermatologist apt, tomorrow and I'm confident he'll give me pointers on how to deal better.

But so far the pain can be managed with cold compresses and Vaseline with aloe and cucumber seems to have the best effect. It's soothing and helps with the inflammation. And it doesn't bother me that Sophia keeps asking me where my nose is, I find that amusing. And now she wants me to put lotion on her back because her back is itchy, which I think is totally adorable.

The other rash, the one that is on my upper chest, which doesn't hurt in any way, is becoming spectacularly speckled. It's becoming a work of art! I am actually quite enjoying it since it doesn't feel like it's tearing my skin open.

The strangest thing about this fight is the passivity of it. Just waiting to see what the next front is. Now it's my face and that, believe it or not will pass. From what I understand it takes 4 months for the worst of it will pass, I'm almost through month 1. From this point on it'll just flare up from time to time. And something else will come along. It's all a matter of finding my footing each time. I guess I just wish I was faster at adjusting.

Sunday, February 20, 2011

My face

Has completely exploded. So the Tarceva, which is the pill I take every night, has this as it's big fat side effect. Now in the grand scheme of things, I hate cancer more than I hate a bad complexion, so on a scale from 1-10 it's about a 2. But it ain't pretty folks.

It's a patchy rash that feels like a slightly worse than normal sunburn, but not a severe sunburn. And from a distance it looks like a burn. But in the immortal words of Alicia Silverstone, "up close it's a big ole mess!" It looks like hundreds of little pimples, it's so icky. But the key is it's not acne, it just looks like it so you can't treat it as such.

So I just gently clean it and keep it moisturized. I just control the itchiness because that I can see getting annoying. I'm actually really happy that I still have my hair at the moment, because there'd be a kinda lizard affect going on. But now I just look like I have adult acne or a rash. Now this is where chemo t-shirts come in handy. Cause then no one will think I'm contagious.
It's not a sympathy thing, just a look I normally don't look this gross thing.

It has gotten pretty severe in the last couple of days, but again totally bearable. However I decided to read about it online and found how many people stopped their medication because of this rash. I can't believe it. I know it's hard to deal with so many changes to your body which you have no control over, but the attitude I encountered online has seemed so odd to me.

These people are mad at their doctors for this rash. Stopping it against orders. Stopping it knowing this is a medicine that is literally keeping them alive. And understand I am not talking about people who have been battling their disease for years and have just had enough of it all. I'm talking about people who took the tarceva for 2 weeks and said, no way, I ain't dealing with pimples. This is unreasonable.

I just can't believe. I hate judging others (wait what?) but here I go. I just think about all the research and dedication that went into the discovery of these advances. I know that drug companies make a fucking fortune and they aren't in it for the good of humanity per say. But many of the doctors and scientists behind these advances are. They are on a quest to understand the complexities of disease and work to unravel its mysteries.

There's a book that you need to read, it's called The Immortal Life of Henrietta Lacks. It's a true story of a woman who unknowingly has saved and continues to save millions of lives. Ms. Lacks was a poor black tobacco farmer who died of an incredibly vicious cervical cancer. In the days before patient consent and HIPPA laws, just before she had her surgery, unbeknownst to her a scientist, who believe it or not, had truly noble intentions took two tissue samples from her. He took one sample of her healthy cervical tissue and then he took a sample of the cancerous tumor. And left to his lab.

In his laboratory the healthy cervical cells died after a couple of days, like healthy cells are supposed to. But Ms. Lacks cancer cells thrived. They multiplied in almost any environment. It was a huge break through. They had developed a line of human cells that could thrive in many environments. This meant that experiments could be performed on tissue in a controlled environment. It's important to note that the scientist who took these samples made almost no money off of this advance, because he was just so happy he was able to get a never-ending source of cells to grow and they travelled well so they could be sent to other labs doing very important work.

It is also important to note that Ms. Lacks and her decedents never saw a dime and lived in poverty and in the worst of ironies, lived mostly without health insurance. Ms. Lacks, despite receiving care at the John's Hopkins did not survive her fight. She did however face the fight with a strength and dignity that is truly inspiring. But the worst part of it all is, she'll never know the tremendous impact her contribution has made to the world.

Ms. Lacks cells are responsible for the polio vaccine, chemotherapy, our understanding that cancer is not a virus, but a genetic disease (genetic, not hereditary, the problem lies with the genes in one cell going haywire), they played a big part in the human genome project, and countless other advances. Her cells are called HeLa cells. They are estimated to have generated billions of dollars in revenue to companies who have used them to develop these advances. They have also wreaked havoc on labs as well. These cells are so pernicious they tend to hop on dust particles and contaminate research (a problem that persists today). It's completely fascinating stuff. The book is beautifully written and is as much about the Lacks' families struggle to understand what this all means and the shock of discovering there was a piece of their mother alive and contributing to the world and no one bothered to tell them for about 30 years.

These are not small things. I have these medicines flowing through me because of the contributions of countless people who worked hard to understand their field, people who have the true ability to make a difference. Save lives. Again, I know money is being made but I can't focus on that right now. I just focus on the fact that I am fortunate that I have health insurance. How does someone who just got laid off deal with a diagnosis like this. My first month's bill to insurance will likely add up to around 20 grand. First month people. My 10 min chemo costs 9600, 1 hour 98, taceva 4400, add in all the anti-nausea, doctor visits, lab tests, scans, biopsy, we're talking a damn fortune. Now I have coverage, so I am only expecting to pay co-pays. But how do I wrap my mind around the fact that people have to make choices like selling their house in order to save their own life or the life of their child. I just gotta be grateful.

Really I'm going to complain about acne? I just don't understand it.

So I look a little gross. I can deal. Ms. Lacks lost her battle but still found a way to save lives. I don't think that's a coincidence, I think that was meant to be. I just wish she lived to see it all, to know what she did, because it is no small thing.

Ok here's the photo of my face, enjoy! ;)

Friday, February 18, 2011

no blog today, went shopping instead! ;)

But in case you're wondering, I'm feeling awesome today! Hit Kohl's and Macy's. Scored on cargo pants and jeans. Sweet!

Love you guys!

t-shirt today: I'm not lazy, I'm on chemo. What's your excuse?

Thursday, February 17, 2011

chemo and the bootleg

So this morning was chemo round two. Bright and early, left at 7:15. Got up at 5 (just cause I did). Did my morning meditation in the dark cause Sophia was still sleeping, that was nice actually. Re-packed my chemo bag, had a bagel and locks and we were off.

Today's t-shirt: Chemo! Breakfast of Champions.

The lab techs loved it.

So I see the doc, he thinks I look good but very "rashy" so he makes me an appointment with the chemo dermatologist. I wonder if they give chemo facials?

He also says my first scan will be in just over two weeks. So I'll have another Brain MRI and Cat Scan (whew, no pet scan). And we'll see how I'm responding. And then he says that the Brain MRI is to see that we can keep holding off on brain radiation. That's the first time he's said radiation in way that it's likely. Before it sounded more like an option. That was a touch jarring, only cause there was a "you know, if the chemo doesn't work" feel to it...

But he was super happy, esp. now that Tarceva (my new medication) is in the mix. This news has made my team very upbeat. I like that. It's a quick visit and I am on my way to the chemo suite.

I get my old room and I hop into bed. I'm not stupid, this time I'm taking the bed plus I'm mad sleepy this week. So the nurse, Maureen, comes in, I've met her before, she's lovely. She is jazzed about my port. She talks me through the steps, which sounds long, but most of it was actually just cleaning up the site (I had lots of sticky goo from the bandages).

Then the needle goes in. I have to brace myself against the bed (not held down, I just have to have my back against something, I can't just sit up). So I hold position, take a deep breath and snap. It's in. It feels like a thumb tack going in and pain gone. I feel nothing. I fussed for that. What a loser!

Maureen is like, can I make you the poster girl for ports? Everyone fights this thing and I can't stress how super, duper awesome it is. I was like um, yeah. That was nothing!

So I'm immediately hooked up to the first bag of Saline. That's three hours of lubing up the kidneys. Over the next six hours they'll monitor all liquids in and out. I was really bad at the "how much did I pee game" today, I was off by at least 50 ccs every time. I was so much better during round 1. I was nailing it left and right.

So I decided we would watch The King's Speech (someone, who's identity I shall protect, had an Oscar copy that they lent us). I wasn't jazzed about seeing it, but I do like the actors in it so what the hell. Well I really liked it. I do think it would have been better had we not had to pause it 1000 times for the fluid in-take/output procedures. I also got my 10 minute chemo while I watched it.

I see what they mean by it's a small film. Small in the sense that it has a limited focus, few characters and it's intimate. Just the kind of film I like and it was witty. Great writing and it wasn't over dramatized. The trailers give it a sweeping feeling that I didn't really sense from the film itself. It was just an enjoyable, well acted film. I liked it. And I was able to follow it, that was nice. My chemo brain ADD was able to focus on it. Though the constant pausing did help.

Then saline bag #2 is hooked up which means, 1 hour chemo is imminent. So one bag of anti-nausea goes up, then the diuretic, (they are little 5 minute bags of IV) because chemo nurses love making you pee. I think they enjoy watching us all dance in front of the bathroom door waiting for each other to measure and leave. It must be hilarious.

Then I take pills to prepare, a mega-dose of steroids (3 times my normal dose, this makes me crazy hungry, if my mom falls asleep she will be in danger of being eaten) and then a pill anti-nausea pack. And then the Cisplatin is hooked up. When you get a chemo drug two nurses have to come in, they have to verify it's you and you have to give your birth date.

Maureen is very excited to tell me that she and I share a birthday. Of course hers is at least 10 years after mine, everyone is younger than me at this hospital, except for like 2 nurses. The one with the nose ring (who I have a major girl crush on, she's the one I passed out on, I don't think those two things are related however, then again...) and the nurse I only saw once who hydrated me on my maple syrup day. But like I said, it's not like this age thing bothers me or anything...

And Maureen had just seen The King's Speech so we were talking about it all and she had that sweet youthful, "wow was it really THAT scandalous" to which my parents erupted with "yes!" and then felt the need to point out that they didn't actually live through it. The age thing might be getting to them too!

I was crazy sleepy so I just curled up in a ball while everyone watched TV. Maureen and John get me a nice toasty blanket and I snagged a nap. Have I told you how much I love chemo nurses. They just care for you.

Six hours up and I'm all done. All my appointments are set up, next week dermatologist and second week of March are my scans and chemo 3. Maureen comes to unhook me, thumb tack pull and done. One measly bandaid! We high five our upcoming birthday and I'm off.

The one thing I can never remember to do when I get home is flush twice. Apparently my pee is lethal right now. The only thing I can't understand is how has this not worked it's way into a CSI Miami episode yet? David Caruso, putting his sunglasses on, "Someone pissed off the wrong person".

Well I don't know about you but I'm curious how wickedly weird these posts will get now that I'll be in the height of chemo brain.

Oh and as a side note, we got the explanation of benefits (not bill) from chemo 1 and it listed the price of the meds. The 1 hour chemo, Cisplatin, the one they call "platinum class", the one that is FRYING my reproductive system, boiling my kidneys, attacking my ear drums (which has been really minor, why I never mentioned it before), etc... Costs 98 bucks. That's it.

The 10 minute chemo, Pemetrexed. The one that causes a slight non-itch red blotch. COSTS 9600 DOLLARS!!!! I can actually say I've spent 10,000 bucks in 10 minutes. TWICE!

How crazy is that?

Wednesday, February 16, 2011

The chemo brain affect

Ok so chemo brain is a real thing. Do we overuse it? Sure, I can't spell normally, but now I can blame the chemo. It's like preggo brain, but worse. Now it's probably not fair to blame only the chemo, I am also on a steroid to keep my brain swelling down. So there are other meds and factors at play. Though I don't think the brain mets are to blame, I've had them a while and I slept before the diagnosis. Though knowledge of the brain mets, might play a part. But for the most part, the most of the brain weirdness coincided with the first week of chemotherapy.

I always knew it would happen, I just didn't realize how instantly I would feel it. The first thing I felt was this tingling at the top of my scalp. It actually felt like radio interference, like there was an electromagnetic cloud above my head. I still feel it a little bit, but not like those first 5 days following my initial chemo treatment. The only thing that relieved the sensation was a shower. Something about the water hitting my head, it's a nice feeling. But since my pass out episode, my mother closely monitors the length of my showers. She says I take too long. I have a lot of flesh to wash, I'm not doing karaoke. It's driving me nuts.

The other sensation, the one I still have is the sense of ADD. I feel like I have 10 cable channels going on in my head at once. It's made me rather rude I must say. I can't focus on conversations, tv shows, books and I constantly feel like I want to bolt. I can't sit still in a car, I am so restless. I spend a big portion of my day in front of my laptop. The internet helps me with the ADD feeling. I can obsessively flip back and forth between Facebook, MSN, Slate, the blog. And I'll do this minute to minute too.

I can however, blog, watch Oprah and hold a conversation at the same time now though. It seems to be my preferred method of communication aside from e-mail. Carrying on a conversation with someone while not ever looking in that person's direction. It's strange.

The first time I went to the Mall after chemo, I went with my parents and we were in JCPenney. I decided I would walk ahead to Macy's. Now that requires walking straight to the center of the mall and turning right and walking straight to Macy's. If you know you me, you know what a large portion of my life has been spent in the Staten Island Mall. Plus I worked there for a couple of years, I know where the Mall's trash goes, I've done inventory til the middle of the night, I know how to get into the Mall when it isn't open. So this should be a piece of cake.

However chemo brain has complicated this process, I basically said "ok walk straight, turn right, walk straight." Over and over. Careful not to walk into anyone along the way. My parents quickly thought the better of this and mom sent dad soon after me. By the time he caught up to me, I was saying "left foot, right foot, left foot, right foot". When I was looking at shoes, the woman in front of me changed direction. I must have given the poor woman the dirtiest look. It's not that I was upset that she changed her direction, it was the conversation I had to have with my feet in order to negotiate what she did. "Look guys, she wants to look at boots, you can't blame her. Can you just not move for a sec, she would really like to get by." Cause otherwise I would have been on top of her. She was thin, it would not have been pleasant for her.

On the Saturday after my first treatment, our friends came to visit me. At one point I said to myself, "listening to the words that Jessica is saying will help me understand the idea that she is trying to convey".

It's much better now, but that first week was something. It really is a strange feeling to have this restlessness. I know I must come off so awful to my parents and my in-laws. I've sorta blended into the background of my home. I've become very quiet, which I think my former co-workers will find the most amusing. I'm never quiet, I always have something to say (not that it's worth a damn). Now I don't cause I'm pretty sure it won't make sense to whoever is listening.

I can do it with John, he is great at just listening to whatever pops out of my head. He is great at following my bat-shit lunacy. We've been together more than half of lives, the man gets me. Then there's that whole love of my life thing.

But I did try it with my mom. I don't think she was that amused at my lament that pagans can't seem to come to a consensus on color correspondence regarding healing and healing cancer specifically. (Really, is it blue, orange or green. Come on people!) She was like, oh that's... interesting.

So I try to keep my filter in check before I start talking to her about the importance of the moon being in Virgo this weekend. Or my desire to build a new dream catcher, cause I think my old one has stopped working.

I just wish I slept better. I've lost the sensation of sleep. I can't tell if I've slept or not. I have to actually think about it. "Well Uncle Louie and I were talking to that penguin so yeah, I guess I was sleeping." I love sleep, it's one of my favorite things. But the sensation escapes me. It's not that I don't feel rested, I do. But you know when you wake up and it's 2 am and you say, "oh good I have 4 more hours before I have to be awake!" I no longer have that sensation. For one it hasn't felt like I've slept and two I'm not getting back to sleep any time soon. I'll be up for at least 3 hours. Not stressing, not dwelling. It's the ADD. I'll think about breakfast, Harry Potter, blog ideas... Doesn't matter, my brain just won't shut off until it exhausts itself.

The worst part is it's made me a crap mom. Not that I was great before, but I really suck now. If it were just me and her, she'd have to make her own meals. Remembering to do things like feed her is so not in this head right now. I've been watching our mothers meticulously potty train Sophia and I'm thinking damn that's hard work. Not that I am completely disconnected from her, we get snuggle time every morning. I catch her doing things she shouldn't be doing and know enough to stop her. But my job of being a stay at home mom is on hiatus.

It's strange I now have permission to just be alone. I can escape for a nap or to read a book. This is the stuff mom dreams are made of. It feels so weird. To just be within myself, it's nice because I'm in such an odd place mentally. But it feels wrong.

But chemo brain man. This shit is real. Trust me.

My breast cancer conundrum Part 2

I just got it. I was so focused on the fact that I was prepared for the wrong cancer, that I missed that I was prepared for cancer.


Tuesday, February 15, 2011

The Friend Affect

Ok so I worried people with that last post. I did not mean to. I'm good I swear, just verbalizing a little fear. It comes with the territory. I have another post about a dream I had, but I am debating whether or not I'm going to post it not. I don't want to worry anyone again. Remember chemo brain, it's a real thing. So I'm going to post this. I wrote it last night and this morning before I posted the Shoe one. It's just something else I've been thinking about and want to share. I'm doing so in the hopes that everyone takes it from a place of honesty, not a place of weakness or fear. Just the beauty of having people in your life who love you, and tribute to them for making this all easier. So without further ado...

The Friend Affect

For the sake of this post I'm going to use the word friends, but I mean it interchangeably with family. Friends and family are complicated and painfully inadequate words. We all have family who we have virtually no contact with but we share genetic info. And we all have friends who are quite simply, family. So I'm going with the word friends, even though many of whom I speak of are either genetically linked to me or my husband. I hope you are ok with that, the word "friend" has the highest meaning in my heart.

You may or may not be aware but each and every one of us has a mental file that is called the "Things you don't know you need until you need them". Mine has been filling up quite a bit of late. I'd like to share some of them. My hope is that most of you reading this will never learn this for yourself but I know a couple of you already have unfortunately.

One of those items is this. You need friends in your life to whom you can say "I'm afraid I'm going to die". But more than that, you need that friend to come back at you with "I understand." You don't need "Oh don't be silly", "don't be so negative", "please don't fell that way". And it would be a perfectly reasonable response from your friends, but to come back with "I know you are, I would be too" is what you need to hear back. You wouldn't think that but you do. You need that fear acknowledged, that it's real.

Now I knew before this happened that I was blessed with true and wonderful friends. But I didn't realize how many friends I have who fit the above description. That's an amazing thing. Feelings like this are strong, to put them in someone's direction feels very burdensome. To have your friends shoulder it for your sake is a very humbling, beautiful experience.

I'm also blessed that these same friends have a natural ability to balance the gravity of it and yet still figure out when I just need to shoot the breeze. Recognizing how I shouldn't be living and breathing all this every moment of everyday. To be snarky and funny and talk of non-cancer things. Friends like this find a way to quietly throw you a life raft and get it around your waist. Pulling you from drowning in the stress of it all and pull you out of yourself.

They take on different roles, cheerleader, therapist, drill sergeant, spiritual advisor, event coordinator, gossip columnist, researcher, teacher, etc... Friends who faced down the same enemy who let you know they did it, you can do it too. Friends who have the answers you need about chemo and hair loss and nausea. They each tap into the part of you they know best and bring it out of you, piece you back together, make you whole. Slowly arming you with the very things you need.

I choose not to name these people if that's ok. They know who they are and if they do not recognize themselves in this, I'm not doing a good enough job telling them I love them.

The other thing that is so overwhelming is the amount of people who just reach out to you. People I haven't seen in a decade or more, taking a moment to tell me they are thinking of me. What is so interesting is how many people who did reach out qualified it with some sort of apology. As though telling me they were sorry would add to my burden in some way. But the truth is the devastation of it all hit me like a tsunami. It was pretty complete. No amount of sympathetic expression could add to it. In fact it has the opposite effect.

When I would check facebook and see my inbox, or heard who called my parents and my in-laws. To get e-mails, cards, prayer cards, deliveries, etc... People from high school saying "hell, I know we haven't seen each other in 20 years but if you need a babysitter or a cup of coffee I'm there!" I can't adequately explain the effect that it has but I'll try. It's kinda like all of these hands coming together and taking a little piece of this and lifting it. And together it lifts just enough so that you no longer feel like you are crushing underneath it. Like a groundswell of, "If we just all put one hand in, maybe she can stand up under the weight of it".

And then there's the humor. I don't think I'm that funny or smart, but I do like to see the humor in life. Even when it's painful. The first joke I made was in the ER to the PA Adam who was going over the symptoms I had leading to my diagnosis. Now that we knew it was lung caner, everything needed to be re-evaluated. Among them was loss of appetite. "So you mean this new found self-control was just cancer? I guess I can return my copy of "I can make you thin"." Having friends see the humor and meet you with it back is just awesome. I mean come on, it's not like I just got hit with this. I spent 5 years looking for wrong cancer. In cancer cell comedy clubs, this is hilarious. And I get the joke.

Then there are the prayers. Some people ask me if I mind that they pray for me, some people ask me if I'm sick of hearing that people are praying for me. Are you joking? First of all just cause I'm a Pagan doesn't mean I dismiss other people's faith, I embrace it and fully respect it's power. Pray away, just cause Jesus isn't my god doesn't mean I don't want him in my corner. I've read about him, I'm down him. Not so sure he really looked that much like Andy Gibb, but I dig him. And to know that people are taking the time out of their day, turning their thoughts to me and asking their god to help me. It's overwhelming.

And then there are the things that are happening from people I just don't know. John's coworkers are raising funds, cooking meals, sending cards, flowers, shoveling snow. I've always believed people are good, but this is beyond anything I've ever known. This is the stuff of Oprah episodes.

And then of course there is my husband, parents and in-laws who have turned their lives upside down to care for me, that's of course the hardest part. They don't make thank you cards for that. It's just too much.

In the waiting room on Friday John asked me if all my anger and resentment, the kinds of things we all feel everyday, if it was gone. And the truth is it has and it hasn't. Cancer has made me a patient not a deeper and better person. On the one hand I spent the last two years complaining about being home with my daughter and missing working. How stupid do you think I feel right now? On the other hand, my husband's inability to sort mail is still rather irritating and the man has spent the better part of 4 weeks trying to save my life. You'd think I'd let it go. But he knows where the recycling bin is, I haven't hid it from him.

But there is one major effect that this has had on me. The know-it-all-ism. Man that shit got kicked right out of me. I spent the entire time in the ER just realizing I know nothing. Absolutely nothing. That hurts. It's affected me on a level that I think you can actually see with your eyes. It's deflating. It's made me quieter. I have a lot less to say. All I know is what I feel and what is that worth? They are just feelings, they are subjective, irrational and based on perceptions.

The only thing I know for sure is love. That is real.

P.S. For the record I have no ability to tell the difference between the words effect and affect, and this pre-dates chemo brain. So I'm sure I've used them incorrectly. And don't bother explaining the difference, I totally don't get it. One's a verb and one is a noun right? Yeah I so don't get it.

Monday, February 14, 2011

The other shoe?

I can't help feeling lately that the other shoe is going to drop. Meaning that I feel way too good, like it's almost unnatural to feel this strong considering what is going on in my body. It's a disconnect and it's hard to wrap your mind around. Now I am on a new medicine called Tarceva, that comes with it's own set of side effects that should start hitting me soon.

One of the side effects is explosive acne, can't wait for that. But honestly pimples are the least of my problems. But there is also a major diarrhea warning (sorry TMI), the insert that came with the medicine actually says to make sure you bring Imodium AD with you in your purse. So this is going to be a problem. And if my math is correct this should all start going down just in time for my next round of chemo on Thurs.

Now I know it's silly to worry about something that hasn't happened yet and might not happen at all. But it just feels like something is coming. I guess it's just this whole game of waiting, waiting comes with this new reality. There's always tests to wait for or right now just waiting to see if the medicine is working, so there will be scans in my near future.

I think I'm just scared that I'll actually start feeling sick. I mean sometimes my lungs hurt, but not like they used to. Sometimes my head hurts, but that's mostly cause it's swimming in meds right now. But not actually feeling sick has been a source of strength for me. It helps give me that mind set that I can do this, I can beat odds. But what happens when I get weaker, how do I keep my resolve up then?

There are two things that have gotten worse. The fatigue which I as aptly warned about by the nurses so it's not entirely unexpected. But the intensity of it since Sunday has been surprising. Especially when you start to feel less foggy, this feels a little sudden. I just don't want to keep my eyes open. If it were up to me I'd spend most of my day in bed, but I will not. I feel I owe it to my body to move it because I can.

The other thing I hate acknowledging is the shakiness. It's bad. I noticed it a little bit in the beginning, but it's here and it's not going anywhere. It's a good thing I don't eat peas, I'd never be able to negotiate them a path to my mouth. Filling empanadas last night was quite a challenge. It's getting harder to hide too, if you see me hold a fork you know my hand be a shakin.

So, it really does feel as though, things will get worse. But hopefully I'm wrong. That this will all be moot and I'll look back at this post and say, gosh that was some paranoia huh? But it's a genuine fear right now.

Sunday, February 13, 2011

The mediport or much ado about nothing

So I had to get a mediport put in and it freaked me out a little bit. I know a lot of people thought it was silly that after these past weeks this little procedure would be the thing to put me over the edge, but it kinda did. I guess it was just something else to wrap my mind around. But I do like the idea of not getting another IV in my hand, so I was always going to go through with it. Plus I have this bizarre need to make my chemo nurses happy and they love ports. But I was nervous.

So after several false starts, I get to the pre-op appointment this past Tuesday and meet with the surgeon who will put it in. He is lovely, sweet, soft spoken and makes me feel completely at ease. His name will not stick in my head, I absolutely can not say it. So I just smile and call him doctor. They fill me in on how it works, where it will go, how it'll eventually desensitize and using it will get easier and easier until it basically just becomes apart of me. I've been told this by people who actually have it, so I'm feeling really good.

Friday arrives and we're on our way into the city. I snap at my husband in the car so yup I'm nervous. We get there and wait and wait and then I get called in. I get my final IV in my right hand, next to the vein that I passed out from last time so the fact that I remain conscious fills me with pride. The nurse who did it is from Staten Island, we tell each other our respective neighborhoods but that's it. I don't know if we were both equally embarrassed to be from there, or if we felt it wasn't enough to bond us more deeply. But she nailed that IV man! And she is a big port fan so she further informs about how it works.

I go back out to the waiting room and my mother points out that over the past 3 weeks no one ever asked my about my ginormous black and blue arms and then we decide it's probably the hair cut. Between the spikes, the bruises and the extra 70 pounds on my frame I either look like a drug addict or that I know how to swing a broken beer bottle. It was an interesting conversation.

Then I get called in and the nurse who calls me, sees the posse I brought and panics. I said, don't worry I just need him, pointing to John. He says "good, he's the most responsible looking one of the bunch!" It was quite funny. My mother feigned offense, but not so sure she was feigning...

They give me super comfy socks that the nurse is very proud of. I change into my gown and we wait some more. They put me on a stretcher and wheel me down to the OR. The distance between recovery where I hopped into the bed and the OR is ridiculously long. It's back and forth through a series of hallways, I immediately think whoever designed this is a class A moron. The poor transporter was working hard, she was a mega Yankee fan and was talking to John about all the Yankee stuff he was wearing. He got it from his cousin Lou, their dugout manager, she was totally impressed.

Then we get to the OR. The surgeon I originally met, comes in and says "I met you at clinic? You gave me consent for this?" I'm not thrilled that he sounds confused, but I said "yes, yes I did". Then he goes to another room and we hear tension. You realize that I'm on the table right...

Turns out there was a scheduling mix up and he was scheduled for 2 surgeries at the same time. But there's another surgeon available to do it, if I'm ok with it. While they are all arguing and John is becoming livid, a young surgeon comes to me and explains the procedure. She tells me that she's the one actually doing the procedure, they are just sorting out who is showing her how. This should probably freak me out, but it doesn't.

What is driving me nuts is meeting so many doctors who are younger than me. I don't know why this bothers me, age has nothing to do with what they know and being fresher out of school is probably a good thing. But the idea that she was playing with barbies while I was losing my virginity annoys the crap out of me. What's wrong with me?

So my surgeon, who's name I finally learned how to say, says to me "Ok I'm supposed to be in another room, but I will be here if that is what you want. Otherwise Dr. Colby is here and she can do it. Whichever you prefer." I agree to Dr. Colby who immediately introduces herself to me. I like her, she reminds me of Josephine the midwife who works with Dr. Reilly. She has to go over it all again with me and I have to sign another consent. But she's cool, she's chill and she's older than me. She also recognizes that my birthday is 3 weeks away (your date of birth is your identification at Sloan, the minute you walk into the building until you leave, you will give your birthday about 4700 times). She says, "hey that's my younger brother's birthday too, but he was born in 1972 though". So we've established that both she and her brother are older than me. This makes me feel good, why I don't know since I am unaware that her brother has any part in this procedure.

So I sign my papers, John leaves and they hook me up to my meds. I was completely awake but felt just the injection of the local anesthetic. Other than that I felt nothing but pressure. The surgery took literally 15 minutes. They spent more time preparing me for it than actually doing. There was lots of shoving so I figured I'd be sore when all the meds wore off.

When it was over I opened my eyes and everyone was gone. There was no one to say thank you to, except for two lovely nurses who tell me I did awesome. I live for nurse's praise can I tell you. I have an unnatural need to please them. So they wheel me back to recovery where I meet Bing.

She's my recovery nurse and she can't wait to tell me that Mubarack has left Cairo and the military is in charge in Egypt. This was news to me because last I heard he had punked the country. I wonder how he'd feel if he knew I associate him with lung cancer. She and I share our joy of witnessing democracy in action.

My family comes in and we watch CNN and the jubilation in Cairo. Anderson Cooper says we'll all remember where we were today, yes, yes I will.

After an hour I can't help but notice that no one is feeding the fat girl. I haven't eaten since 7pm and it's now 3pm. It's 20 hours, I'm about to eat Bing. She's small enough, I know I can take her. But she looks boney. The other nurse whose name I don't know looked fleshier, but she'd be harder to overpower...

No cookie, no juice. WTF? And where the hell are my cancer pretzels?!!!

Then I am set free. I inhale a granola bar and announce that we will be eating Mexican for dinner. So my port is in. All this fuss over a 15 procedure. My arm is still sore and laying down in a challenge, but it's not bad. Just sore, like someone stuck a thumb tack into my upper chest.

It's 2 inches above my right boob. I'll take a photo of it once it heals, right now it's just bandages and black and blue. But it'll be a little bump under my skin as it heals. I look forward to freaking out little kids with it.

Thursday, February 10, 2011

The Surrender

So for the purposes of this blog we'll all just have to agree that all faiths are equally valid and no matter what god you believe in, we're all more alike than we are different. I am speaking specifically of faith. Not the politics that can come of religion, or when people use their religion to impose their beliefs on others. Let's just pretend that that never happens, and we're just a big sphere of people with different and beautiful belief systems that never ever cause strife of any kind. Just go with it, will ya...

For those of you who know me, I identify myself as a Pagan. I have been one for a very long time, since college. I sometimes advertise it, I sometimes keep it close to my vest. It really depends on my audience, because sometimes it's just hard to explain. But I discovered Paganism in college, until then I had always fancied myself an agnostic. But then much to my surprise I realized I actually did have a belief system and it took me time to figure out what it was. So I read and read and one day, I read about Wicca and I thought, ooo, I get that. That really speaks to something inside me.

But with deeper study of Wicca I learned that I didn't completely mesh with the dogma, but the more general title of Pagan, that fit. Now like all faiths, I struggle with mine. I tend to struggle with it mostly when nothing is going on in my life. That's when I have a harder time defining my belief system, that's when I find myself missing my Catholic upbringing, or when I feel left out (which I sometimes do). Baptising my daughter was an odd experience. I proudly baptised her Catholic because we are going to raise her Catholic, and when she's a teenager if she'd like to chose another path or know more about mine, that's cool. But I had to pretend I was Catholic when what I wanted was to be acknowledged. I was a Pagan mom choosing to raise a Catholic daughter and I didn't like that I couldn't do it openly.

The thing about Paganism to understand is that it's a very autonomous religion. You direct 90% of how you worship and whom and so forth. But it's more than that, there's a major DIY vibe which is why so many of us are drawn to it. At times like this when things seem so out of your hands, a Pagan will find a way to grab onto something and regain a sense of control. We have many tools for this. Not that we are alone in this, I'm just explaining...

So this all leads me to this. When I first got my diagnosis I struggled with the idea of surrender. I had the hardest time during my Pet Scan and MRI. Part of me thought, just let it all go, whatever the Universe throws at me, I'll take it. But I couldn't, so I just kept begging. Like if I begged hard enough I could somehow will my scan to be clean. I simply could not let go. I imagine that's normal, I imagine I am united with many many people in my exact position in this regard. The distance between learning bad news to the learning exactly how bad it is, is a long one. No matter how many days or weeks, to you the waiting may as well be centuries. I lived several lifetimes in that 4 days of not knowing where my cancer was. But the worst part of that 4 days was believing I could somehow influence it all if I just concentrated hard enough. I felt like it was my responsibility to keep on thinking, keep on concentrating and visualizing. Like I'd be failing myself if I didn't.

When we got to Sloan, learned all the facts, there was another question that was raised. The cancer I have has 1 of 3 possible genetic markers. 1 marker has a very promising drug (I just learned I have this one, whew!), 1 marker has a drug that might work with chemo and 1 marker was just plain lethal. It would take two weeks for these results to come back.

It was something else to beg for. But I had nothing left. So I didn't. I felt no compulsion to. John and I just looked at each other and said, things haven't been going the way we wanted to let's just assume it's the lethal one so we're prepared. It was natural, I didn't have to will myself to feel this way, I just did. I had finally made it to the surrender. The thing I wanted to do while waiting for my insides to light up in that little room, but my mind wouldn't let me. But this time it just came.

Of the two states of being I prefer the surrender. It took the burden off of me. I stopped feeling responsible for things I had no control over. It let me concentrate on the things I could control, my self-confidence, my mind set, my waking up every morning grateful. Not forcing myself to beg was the best thing I could do for myself. Now I've decided I will not beat myself up too much for anything I felt or didn't feel in those 4 days. There's no manual for how to deal with a devastating diagnosis, and you have to let yourself feel what you need to feel. But to just let it go, to just say Universe whatever you got, I'll take it. It's a freedom.

So now I can take my usual DIY religion and say, ok I'll use those tools now. I'll align my brain with the chemo inside me and I'll keep meditating on the idea that I can beat the odds. But it's not the same as being in that machine and begging for my life. It's better. And I like it here in surrender land.

My disappearing symptom

So there's one curious thing that has occurred. As I mentioned earlier what started this whole ball of wax into motion was that I had developed a cough. In the beginning during the summer it was just a cough that would mysteriously appear and disappear. It wasn't until the Fall that it became an all day and all night nightmare of a cough. It would just come in violent fits. I would literally cough until I gagged. John and I would joke that I was dying of consumption. That I sounded like the orphans from The Simpsons. It was almost comical.

Again as I mentioned my ENT experimented with several medications for acid reflux and asthma. Nothing worked. I would cough and cough and cough. It was really bizarre. And then of course I headed to the pulmonary specialist and the rest is history.

So what's strange? Since the moment I was told I have lung cancer, my cough has mostly gone away. Not since chemo. Since the words "lung cancer" were uttered. John and I figure my cough is about 75% better and I don't wake up coughing at all. I mean at all.

I haven't had one coughing fit since the diagnosis. Now I still cough when I get to the top of the stairs (I'm fat and my lungs are filled with tumors, it's to be expected) and my lungs REALLY don't like the vapor of the shower. And I occasionally will just let a random cough out here or there. But the coughing fits are gone. It's like they never happened.

For the record I am on all the same medicines I've always been on so there's no chemical difference in my body.

How can this be explained? The only thing I can think of is my brain knows it's cancer so what's the point of coughing? I can't cough out the cancer. Otherwise, I really don't know what it could be. But how odd right?

Wednesday, February 9, 2011

Vampire Assassins

So there are a couple of questions that other people have asked that have never really crossed my mind. The first of which is, "this must be a mistake, right?" Funny, that it never even entered my mind. Sloan Kettering has my slides, if they find that Staten Island Pulmonary Associates made a mistake, I'm sure they'll call. Like "hey, these slides just had chocolate pudding on them, you're good".

And then of course there's the "why?" I've actually never asked myself that question. There's a billboard that you see on the way over the Outerbridge Crossing from New Jersey into Staten Island. On it is a beautiful little boy, no more than 10 years old. Next to his smiling face is stated the fact that he has a brain tumor and is fighting for his life. When someone can adequately explain to me why he has a brain tumor, I'll ask why I do too. Until then, I'll just subscribe to the theory that shit happens.

But the scientific why, that I know. There was once a time when medical science believed that Cancer was a virus. Like they literally believed you could catch cancer from an airport. That wasn't a completely ridiculous assumption actually. In laboratories scientists could never get human tissue to stay alive in their artificial environments for more than a few days at a time. Normal human tissue always dies off. It isn't meant to last, a cell has a finite number of times it will split until it just dies of old age. But if the scientist then infected that human cell, altered it with some outside influence, they could get it to live much longer. In fact they got a couple of strains to live forever. So it was not unreasonable to believe cancer was caused by an outside influence. And that is true, that is how cancer cells can form, but the outside force is not necessarily a virus. Cancer cells form mostly due to age, genes eventually break down and mutate and age raises that probability. Then there's factors like lifestyle, environment, some viruses like HPV, starting off life with bad genes like BRCA, and others... But for the most part, you can't really catch it (HPV cervical cancers notwithstanding).

As for me, one day a couple of years ago, I had a lung cell that had one mutant gene. Up until that fateful day, it was still splitting like it was supposed to, doing it's lung cell thing, because his gene twin was still normal and was doing the work the mutant gene had stopped doing. The good gene was keeping it all in check. But then one day, in that one cell the mutant gene turned to his perfect twin and said, "Come on? Are you really satisfied just being normal? If you mutate, together we can live forever and be all powerful." And the twin said, "I like the sound of that" and it mutated too. So I now had a lung cell with two identical genes no longer doing their job of finitely dividing until they quietly died of old age. Nope they were now immortal and can divide infinitely. Together they became my very first lung cancer cell.

Cancer cells are as close to the actual incarnation of Vampires as there can be. They do not die of old age like cells are supposed to. They multiply as much as they want, wherever they want. And even worse, they feed on blood. They siphon it from your organs, sinking their little cancer cell fangs in and drinking it up. Once they amass enough in their initial spot, they hop around your body, using various travel systems depending on the kind of cancer you have. They find other organs to suck dry. They are brilliantly efficient killers and have I mentioned they live forever? The doctors estimate that all the spreading that occurred in my body happened over a period of 6 months. I can not emotionally wrap my mind around that. It just seems so fast. And I have a slow growing cancer. What the hell does fast growing cancer do?

So how do you kill cancer? Well you have to drive a steak through it's heart, cut off it's head and stuff it's neck with garlic. The steak through the heart, well that's your oncologist's job. Be it chemo, radiation, surgery, medicine, whatever. You send those steaks flying through the air and hope your aim is true. The cutting off of the head and the garlic. Well that comes from you. Your faith, your love of life, family, friends, support from your neighbors. It all plays a part. Does it work, only time will tell. All you can do is gear up for the fight and hope luck is on your side. I do not discount luck, I refuse to accept that people who lose their battle lost it by any fault of their own. So I will not remove the word luck from my vocabulary as much as people in my life might want me to. I will honor those who lost their fight as much as those who won. I don't know why their are winners and losers in this fight, I wish it was only winners. Maybe one day when we know about the disease, screening and medicines, that will be the case.

Sophia's Gollum sonogram

Tuesday, February 8, 2011

My breast cancer conundrum

So for those of you who know me, already know I have one of the two great whites of the breast cancer gene world. I am BRCA-2 positive as they say. BRCA-1 and BRCA-2 both come with identical breast cancer odds, it tops out at about 87% by age 70. But they differ in their odds of ovarian cancer. BRCA-1 tops off at about 40% by age 70 and BRCA-2 tops off around 27% by age 70. There are other cancers associated with them too, BRCA-2 also carries an elevated risk for both prostate and pancreatic cancers among others. Now these are strange numbers to deal with because they probably aren't strictly true, but until they can break down the genes more thoroughly and understand the more subtle nucleotide variations those are the numbers to go by.

So I've spent the last 5 1/2 years of my life educating myself about breast and ovarian cancer. I have religiously done all of my screenings (sans my last ovarian cancer screening, that one is overdue, but it didn't light up on my pet scan plus my ovaries are essentially frying like, well, eggs, so they are a moot point). I have read books on the subject of high risk women, I have acquainted myself with Dr. Susan Love who I don't believe has a clue about "previvors" but that's ok she doesn't have to. And well I watched the previvor movement from it's infancy. A "previvor" is a man or woman who carries an astronomically high cancer risk. They (wow, how weird that I now have to stop saying "we") are technically considered cancer-patients-to-be by oncologists. They have a quazy (sp?) place in medicine, and it's a weird state of being. Most of their screenings are similar to cancer patients who are in remission. They are also allotted by most insurance companies, they same surgical, chemotherapy, and screening coverage that cancer patients are. It's a cost measure really, if the probability is there, if you keep an eye on it, you can catch it in Stage 1. The ealier you catch it, the less expensive for your insurance to treat it. Though at the end of the day if insurance companies could, they'd drop them all together. Who wants a patient with a 90% shot to get cancer? But Pres. Bush signed a law saying that you could not descriminate agains someone for having a genetic disposition to a disease. Cheney must have been locked in a closet that day! ;) Sorry republicans just playin whitchya.

So I was a previvor for 5+ years and I wore it like a badge of fucking honor. I knew I was getting breast cancer, it was only a matter of time. I lived and breathed this disease. I knew it backwards and forwards, I knew every option I had available to catch it and then kill it. And then I had my daughter and started to flirt with the idea of just never getting it. How does one do that you ask? Drastic action. You go to Sloan Kettering and they tell your insurance company that they are removing a perfectly healthy patient's breasts, replacing them with fake ones and essentially taking her 87% risk of breast cancer down to about a 2% risk. This was the path I had chosen. But I was waiting. I was waiting to see what the long term studies would say about skin sparing surgery. So I gave myself a deadline, age 40. By then I would know if skin sparing surgery was worth the risk or if I went all in and did the full bilateral mastectomy with spacers.

I know this sounds extreme, but I was looking at it like this, I could continue to screen every year, twice a year or I could take action. I could actually prevent myself from getting it in the first place and avoid things like chemotherapy! (Are you laughing yet?) Besides I've breast fed, they are no where near the line a latitude they used to be, trading them in for another set, was not unappealing.

Then there was the oopherectomy. When you get your BRCA results, the first thing your genetic counselor starts to do is talking about your ovaries as though they have an expiration date. They aren't playing, oncologists, genetic counselors, OB/GYNs, when they hear BRCA they want to yank and yank em fast. The reason? There's absolutely NO, I can't stress this enough, NO reliable screening for ovarian cancer. You have one option, a transvaginal ultrasound along with a ca-125 blood test. They are used together to determine if they think you might have ovarian cancer. It doesn't actually work. But it's all they have and since women like to have babies, it's something to screen while you keep your ovaries. But it's unreliable and has virtually no success rate.

There's a scientist in TX who thinks she's solved it, I hope she has. But it'll be years away. So in the meantime, when you're a BRCA your ovaries start ticking. So mine were too. I wasn't as jazzed about removing them as I was about the boobs. I didn't like the idea of menopause at 40, plus no ovaries would do nothing to change how I look in a t-shirt, so they were always kinda in the back of my mind.

Anyway, I don't know where this is all leading. All I know is, I spent the last five years preparing for a cancer I'll probably never see. Plus if (sorry, when) I make it through this, I will remove everything. I mean really. The idea of losing my ovaries was so scary, now the idea of them silently killing me makes me hate them. But again, they are dying a slow death right now, so I will give them a break. They didn't do anything wrong and they gave me Sophia. But honestly, I'm all about yanking em now. And the boobs, well, I was already ok with removing before I even had a cancer. Now I have a stage 4 cancer and would remove my lungs if I could.

Well no, I wouldn't, I like my lungs, and I'd like them back. I guess my point is, I feel duped. I was ready for breast cancer.

I remember in the ER the day we learned I had Lung Cancer, I said, "I'm not prepared for this." My dad said "No one is prepared for this." And I said, "Oh fuck no. I was prepared for breast cancer. I was beyond prepared for breast cancer. I thought it all through, how I'd be told, how I'd break the news to my parents, how I'd opt for a mastectomy no matter how early they caught it" I had the whole fight mapped out in my head. And while yes my father is probably correct had this been a Stage 1 breast cancer diagnosis, it would not have all gone down as neatly as I'd planned. But I would have known more, I would have gone into it with my eyes open.

This Stage 4 lung just doesn't make sense. Why did I get this heads up for breast cancer just to get hit with this? What was I preparing for? What was the point? I am just so confused!

I just feel resentful. I don't really see what the lesson is? I've always believed knowledge is power, I was proud that I faced my BRCA status head on. And for what? It's so weird to leave it all behind, I still haven't canceled my March mammo yet. This will all go down into some kind of "past life" file. Like that was before the Lung Cancer.

I think I will continue to encourage people who need to get the BRCA test to get it. The odds are way too high to not know you need a mammogram earlier than the general population. But I feel so left behind. I know these are weird things to say, but I can't make sense of this.

All I know is, I'm burning my breast cancer books. I am too angry at them right now.

And I don't mean to imply I'd rather have breast cancer because it's an easier cancer to face. I don't believe that. Breast cancer is deadly, esp when NOT caught early. And so many are not. In fact there is a false impression that the breast cancer movement has created. The death rates for breast cancer have actually not budged in about 40 years. A fact that very few people know. That does not mean there have been no advances, there have been many on the genetic front and on the tissue sparing front. But early detection is still something that has to be addressed. The advanced Stage numbers are WAY too high for a disease that has so much money going towards research. Plus there is still triple negative breast cancer out there and it's evil. Though the UK thinks they may have solved it, the developed a medicine called a FARP inhibitor, and it sounds really promising. It's currently in trial, I have high hopes.

But to this day the number one killer of African American women is breast cancer. Not heart disease, breast cancer. Because of the high occurrence of triple negative cancer and no understanding as to why it clusters that way. In fact there's an excellent chance that African American women have their own great white gene like BRCA but it hasn't been discovered yet. Because Myriad Labs the company that gives the BRCA test (not the people who actually discovered the gene just the people who patented the test itself, long story but the women who found BRCA doesn't get a dime) has decided to charge 3000 dollars for a test that only costs about 400. Why? Because they have chosen profits over progress and Congress has yet to act because well, it's the American Way isn't it?

All I'm saying is, I feel like I got hit with a bait and switch. I guess the moral of the story is...

Life is what happens when you're busy making other plans.

The journey to Sophia

Ok so I'm going to back, back into time... (sorry the spacing gets wonky at the end, I guess it's just too damn long...)

2005 was a pretty sucky year. My mother in law had endometrial cancer, my dad had breast cancer, I lost a beloved Great Aunt, John lost his Aunt and a great Aunt, my father and I discovered we had the BRCA-2 breast cancer gene, there was Hurricane Katrina, it just sucked.

Then there was October. It was a Saturday afternoon and I was at a wedding and I wanted to drink. Now this would not be shocking if we were talking about a normal human being. But for me to want to drink is an unusual occurrence. People often wonder about the fact that I do not partake in drinking. It is by no means a moral choice, I have nothing against alcohol, I think it's a totally normal part of human behavior. So why don't I drink?

Well when I observe people drinking, they seem happy, in fact if they consume enough, they get downright affectionate. I do not know these feelings. After 1 drink (doesn't matter what it is) I feel a pressure in the center of my face. If I have 2 drinks, I am fairly certain the center of my skull is about to cave in. For anyone unfortunate enough to witness me make it to 3, they usual spend the evening wondering why I suddenly hate them and would like to know why I am being such a bitch.

So for the record, for me to crave alcohol, something is amiss.

In addition to partaking of the open bar, I took a couple of shots during the venetian hour as well. John was shocked. When I got home I wanted beer and wings (I got neither). The next morning I woke up exhausted. John teased me that I was having a hangover. Even though I didn't really drink a lot, for me it was a bender. But Monday when I went to work I was EXHAUSTED! John was like, ok you are either the lightweight of the century, or your sick. And then on my way home from the express bus stop I had a sudden thought, weird cravings, utter exhaustion, am I pregnant? (For those of you wondering, it was a big oops, we hadn't actively been trying hence the drinking.)

So I stopped at CVS got myself a stick and while my husband slept on the couch, I went into the bathroom. I've had two major preggo scares in my life. Once in college and once right before I got married. Both times were spent staring at the bathroom sink yelling COME ON BLUE!!! No Whammies, no Whammies!

Funny how I felt the exact same feeling, until I remembered that I was married now (to the same guy responsible for the other two scares if you're keeping count) and we actually wanted children eventually. And I was like, oh right, this is a good thing. And what do ya know, I got a plus sign. I burst out of the bathroom and John fell off the couch, "What?!!" "We're pregnant!" "Get the fuck out of here!"

We didn't tell anyone, who does? I had a doc apt the following week, we were secretly glowing, it was wonderful. It lasted 5 days. By Saturday I had what would be my first miscarriage. It was termed a chemical pregnancy, meaning it was never confirmed on sonogram. I hate that term, I know what it means to the OB/GYN but to me it was real. I won't bore you with the emotional details, but a first miscarriage is unlike any other. There's no way to prepare for it and there's nothing you can say or do for yourself that can make it easier. You just have to go through it. It sucks, end of story.

My doc was totally a jerk about it. He said "So I heard you had an exciting weekend?" Yeah, no. He was a goner. I decided then and there to get a new doc. So thanks to our cousin Michelle, I found doctor Reilly (turns out there's a lot of us who found our way to him) and I went thru my second pregnancy with him. That one lasted a little longer. I was technically pregnant for 7 weeks, but for me it was about a month. We had a sonogram with a heartbeat, we had measurements, there was nothing chemical about this pregnancy.

I was at a baby shower for our best friend and I kept secretly escaping to the bathroom to preggo check as I call it (it's an obsessive thing miscarriage sufferers go thru, it's very OCD and a totally unhealthy state of being). I had just told my parents in the parking lot on the way to the baby shower and I was at a baby shower, I figured the stage for perfect irony was set. And it did not disappoint. I made it home pregnant, but when I got home everything went to hell. Dr. Reilly sent me to the ER. They found the heartbeat, the embryo was still in the wall, but I was having symptoms, the kinds pregnant women shouldn't have.

No one could explain what was happening but I was sent home with a "still pregnant" seal of a approval and strict instructions to not be on my feet. Over the next few days things just got worse. Dr. Reilly said he'd never seen anything like it, the specialist's office they sent me to could not explain my symptoms, but they did something important. They logged the sonogram with the perfect embryo placement and recorded the perfect heartbeat at 3pm that Monday and put it in the hospital computer. The next day it was finally over. There was nothing on sonogram, the symptoms I was experiencing were not odd, they were perfect miscarriage symptoms, what was odd was the embryo was holding on for dear life in spite of it all. The ob/gyn on duty in the ER that Tues. afternoon said my body worked so hard to get rid of it, that if he didn't have that previous day's sono on record he would never have believed I was pregnant 24 hours prior.

And yet somehow that one was easier to take emotionally. I knew what to expect. And unlike my old doctor, Dr. Reilly dropped everything and made me his first priority. That's why I stick with him despite the fact that his office is so insane I once watched 13 Going On 30, not once, but twice in a row, waiting to see him. TWICE!

Dr. Reilly decided to launch an investigation. This was not by chance, my body actively worked against a pregnancy and we were going to find out why. Vials of blood were taken. Not a handful, not a dozen. SCORES. I wish I exaggerating, but I'm not. I would go to Quest with papers asking for 26 vials at a time. To which Quest would say, are they testing you or blood letting you? Only once did they actually attempt to take all 20+ in one go. It should come at no surprise that that is the first time I ever had a vasal vagal syncope episode. There's just something about draining your body of blood that your heart objects to.

After a very long time, we had our answer. I have a prenatal blood clotting disorder. They are a fairly new discovery, apparently the UK has been all over them in their pursuit to understand miscarriage. There are several kinds and some are way worse than others. Mine came in a pair, which meant I was at risk for the entire length of the pregnancy. So we made a decision with Dr. Reilly, we would go to Brooklyn and meet with a perinatal specialist named Dr. Kofinas, he would guide me through the disorder and Dr. Reilly would deliver.

Despite the insurance nightmare that followed Sophia's birth, that we had to elevate all the way to NYS Medical Review Board (who ruled against us, bastards), it was the best decision we ever made. Dr. Kofinas was a character, he was lovely, overconfident and convinced that I was hiding my true Greek Heritage. I told him I'd be any nationality he wanted me to be as long as he got me to full term. He told me I have a 70% chance of losing every pregnancy without medical help, but not to worry, he would get me there.

We were pregnant with Sophia in like a nanosecond and my job from that day forward was to take more medicine that should be required for a queasy preggo woman to ingest and to inject myself with a blood thinner called lovenox every single morning into my belly (which would eventually turn purple). Now let me explain, my blood clots in an effort to A) keep an embryo from implanting and B) clots in the placenta during the entire pregnancy.

To understand how devastating this disorder is you have to understand the importance of the placenta. It exists solely to keep the fetus alive. The mother's blood travels through it dropping off very important things the fetus needs, the most important of which is oxygen. The baby's blood runs thru it and picks up that oxygen. That's how fetuses breathe. My blood clots leaving little or no oxygen at all, so if I do not thin my blood enough I would literally have suffocated my daughter to death. So when people would ask me obnoxious questions like, "Isn't all the medicine your taking hurting your baby?" It would take every ounce of self control to not lunge across the table, dig my fingers into their flesh and say, "no all of this medicine is keeping my daughter alive."

I clotted from day one, you could see the dark spots on the sonogram, which meant my daughter was about to be the most sonogramed baby in history. I got 4D sonograms every 2 weeks. When you see 4D of babies at 34 weeks, it's a beautiful thing. 4D at 14 weeks is just plain creepy. I have a sonogram of Sophia doing an amazing impression of Gollum, it's not pretty. You say to yourself, omg is that what happens when I procreate? Is she supposed to look like that, cause that ain't human.

At one point part of my placenta started dying, that was pretty scary. It was too early to feel her so I couldn't do kick counts. All I could do was hope that at the next sono she was still alive in there. Fortunately the placenta death plateaued and most of it was healthy and Sophia started to really do well. Everything for her was going great.

I on the other hand started having major iron deficiency. My blood was so thin I couldn't keep my iron up no matter how many prescriptions, steaks and bowls of total they pumped me with. It was a problem to the very end. But then Sophia decided to throw us a curve ball and get herself tangled in her cord. Fortunately, the blood thinner kept that from being a problem too, but it meant a schedule c-section and I had to stop going to work. Which was the one thing keeping me sane (well that plus all my friends who had to live thru every agonizing detail of this marathon pregnancy).

Then two weeks before delivery Dr. Kofinas' assistant, Dr. Nyuen said, "Jaim', you need to get someone to donate blood for you. You're iron is so low, you're going to need a blood transfusion at the section". Well I'm glad we've decided not to freak out the high risk pregnant lady. John, as per usual, hit the phones. A general call for blood donors began, and I can't tell you how many of our family members were rejected. It was kinda funny. John couldn't cause there's some rule about husbands donating to fertile wives, my dad had chemo, Adam has MS, my Aunt's blood pressure was too high, everyone in John's family thought they were my type and then realized they weren't, it was comical.

And then there was Thomas. Now if you don't know John's cousin Thomas, he is the type of person that the gods make from scratch, take a little extra time on and then send them to Earth and say "this person will come to the aid of anyone in need and will be a friend to all". He is a special breed and he wears designer clothes when he shows up to paint your house, allegedly...

He donated blood for me and it was banked in my name. Turns out Thomas has perfect blood. There's actually such a thing. The nurses were in awe of it, they talked to us about it at great length while I waited for the OR to open up so I could have my section. I was so entranced by the story of his perfect blood I decided I wanted it regardless of whether I needed it or not. But the nurses told me that if I didn't need it, it would go directly to the NICU. So I decided then and there I would will myself not to need it and let it go to a little one to get them started on a new life. For the record, I didn't need it.
So now as I'm waiting for the OR to open up, my veins aren't cooperating and the nurse blows up my hand so badly I am bleeding all over the floor. Again, so glad we decided that we were going to keep me calm. Then the OR finally opens up, hours after I was scheduled and I get wheeled in to my first OR ever.
They decide that for the spinal block I could not have a stitch of clothing on, so here I am at my fattest, buck ass naked on a table waiting to have a giant needle inserted into my spine. Now I'm sure if I was in labor, dying to tear my husband's face off for putting me in such a way, this might have been an appealing venture. But Sophia wasn't so much as hiccuping, I just bled all over the floor back in the other room and I am a giant naked whale. I felt a little vulnerable plus, they seemed to have kidnapped my husband, I had no idea where they stashed him.
So the anesthesiologist, who I actually really adored, later... Says, ok I have to push really hard so we need to get someone to lean against you. And who do they get to do it. This adorable 4'11" pixie, who turned out to be the doctor assisting Dr. Reilly. Now I suppose pixie's can be doctors too, but pitting her against a giant naked woman twice her size, seemed like a poor use of her skills. So I looked back at the anesthesiologist and said, "you're joking right, you push hard enough and Tinkerbell here is gonna die." And then Tinkerbell laughed and I decided I would love her forever. So we made an agreement, she would bear hug my naked ass and using every ounce of pixie dust she had and I'd try my darnedest not to kill her. And it worked. He shoved that needle in, (icky feeling but it only lasts like a second). And then the warm lovely feeling of warm blankets covers your legs.
Then John was released from captivity and the surgery began. There is nothing magical about a c-section. 20 minutes of cutting, 5 minutes of retching and at some point a baby is extracted. I was so nauseas it actually took me a minute to figure out Sophia was born. And then I heard, Oh she just pooped on you. I was like, please clean that up before you sew me back together pretty please. But that pretty much sums Sophia up, she was pissed, so she let me know it.
Once you get your couple of minutes with your new little one, they whisk them away with their father and the sewing your insides back together begins. It takes quite a while to get it all lined up again, plus I had the added benefit of being pooped on, and your left alone on the table with nothing but your thoughts. Which was plenty of time for me to decide this was all a big misunderstanding. I mean really, me a mother come on. The 9 months was fun but, let's be real. I'm way too stupid to be someone's mother. I then went through all the people in my life who I felt should have known better than to let me do this. I decided the person most responsible was my friend Jessica. She resents this, but the way I look at it, it's a high honor. I decided on that table she is the smartest person I know and therefore should have stepped in for the good of humanity. We have chosen to agree to disagree on this.
Then in recovery I decided I needed to scratch my face off. For which the nurses decided benadryl was the answer. But benedryl puts me in a coma, plus I had already decided I was too incompetent to be a mother, so hiding out in recovery seemed like the place to be. But unbeknownst to me, I lingered there a little too long and concern was growing. But I really did want to scratch my face off, it was really bad.
Once I was in my room, I had played enough mental memories of the Maury Povich Show to decide that Sophia could do worse, so I decided to accept our respective fates. I would be her mother and we'd both find a way to deal.
Bringing her into this world was my greatest adventure. The fact that I had to be monitored for 3 months later for deadly blood clots was worth it. I would have done it 10 times over, with 50 injections a day if need be. To know I kept her alive inside of me despite all those odds and got her to 39 weeks, it's my greatest achievement.
And the fact that she's spent the better part of two 1/2 years refusing to go to sleep, well I think that's just the universe making sure we squeeze in as much time together as possible.