Thursday, March 24, 2011

Hospital Part 2 - Camp Sloan

Ok so as I mentioned I had major stomach cramping the week before last. It lasted for days and when we called the doc on call he felt it was probably the steroid so he told me to resume my old acid reflux regimen. So I went back on my 40mgs of omeprezole. Now the reason I stopped taking it was because it interferes with Tarceva the chemo pill I take every night. But turns out I can take it but it has to be 12 hours apart from the Tarceva. Ok, no problem.

Well I kept getting worse, so I called the next day and the other doctor on call felt I needed to get to the ER to get hydrated since drinking was becoming exceedingly difficult for me. So we decided to head to Urgent Care at Sloan Kettering's main hospital on 68th street. It's basically their little ER, but it's tiny and finding it requires navagating a maze. But we figure it's the best place to be cause all they have to do is type in my birth date and they'll know everything about me. And that's exactly what happens. It's a Sunday night and it's empty so I get a room (well curtain) immediately.

So they give me some fluid and try to decide whether or not to give me a cat scan to look for an ulcer. The doctor who sees me is lovely, had the most adorable little preggo belly and she's sweet but thinks it's the meds making me sick. She's right, I just don't want her to be as mentioned in the last blog. Nothing she gives me works, but everyone in my family is exhausted and I feel like I should go home and tough this out. The doctor decides that since drinking is causing me pain, she decides the cat scan is a mistake (cause I'd have to drink the contrast fluid) so she only gives me an x-ray to confirm there's no blockage and sends me home.

Fortunately for me I felt worse the next day, Monday March 14th. So I call the oncologist cause I want an antibiotic, which they find amusing. So they make me come in, they see I look awful and decide I need to be admitted. And where do they send me? Urgent Care on 68th street. Only this time the place is jumpin'! And it takes them 3 hours to give me fluid. And they send me to the EXACT spot I was at the night before. So now they give me the cat scan. As soon as I see the giant thing of fluid I realize what the doc the night before was saving me from. But I'm convinced there's something really wrong (I'm right about that, I'm just wrong about where the problem is) so I gulp it down.

So I'm in the cat scan machine and not only do you have to drink that red shit, I also have to have dye injected into my port too. So I take the two non-dye scans and then the nurse comes out to inject the dye and she asks me something strange. "You have a catheter? (in my heart)" "Um no." "Oh ok."

Didn't think anything of it. I get sent directly to my room and I meet this lovely nurse who grew up in my neighborhood. Every single nurse I meet while I'm in the hospital over the next 4 days are AMAZING! And I'm not kidding about that. I'll explain more in a sec...

So my husband and mom head home and for the first time since my diagnosis on January 20th (and so far the ONLY time since) I have been alone. I mean I literally have had someone watching me for 2 straight months. And you know what I do? I sleep like a MoFo! I mean I'm still being watched, but my family finally has a break sorta (my in-laws are watching Sophia) but I'm hoping everyone is getting sleep.

Now the nurse and the nurse's aid are concerned that my BP is a bit high, but I explain it's been high since they put me on the steroid dexamethasone. Which for the record raises your BP (among the 9000 other side effects, the list goes on for pages and if you read them all you'd never agree to be on this medicine, but I'm on it so my brain doesn't explode so what can I do).

When I wake up the next morning I meet another nurse, Lesley. Gorgeous, because it's required to be gorgeous to work at Sloan. And she asks "you have a catheter?" and I say "nope" and she says, "oh I thought I read that on your chart". Now you'd think I'd be catching on by now, but I'm so not.

After breakfast a wheel chair rolls into my room and I hear Lesley say, "the doctor ordered an echo cardiogram for you, we're going to take you now." Now I'm thinking, wow that's great while I'm here they are going to check about my high BP. Yeah, no.

So I go to echo cardiogram which is just a sonogram of the heart, but it's tough when you're a woman cause we have tits and tits get in the way of imaging the heart. And I also have flab so that doesn't help, so it takes a long time. But then the technician asks... Anyone, anyone? "You have a catheter?" And I finally figure out something is really wrong, why do they keep asking me this? So I say "no" and she says "ok, what is your diagnosis?" and I say "lung cancer" and she says "ok". So now I'm freaked out.

When I'm done she wheels me into the hallway and says "wait here if we need more images I'll get you if not I'll send you back to your room." As I'm waiting the doors swing open and John walks in. I tell him, dude they found something. He's like what do you mean? I'm like, I don't know man, but there's something in my heart or an artery or something.

When I get back to the room the nurse practitioner, Amy, immediately comes in and tells me what's going on. Which is great cause I would have been losing my mind if she hadn't. The cat scan guy the night before thought he saw something in my heart, the doctors think it's nothing, but thought they should verify it with an echo cardiogram before they completely dismiss it.

I see my oncologist Dr. Krug and he's convinced it's nothing. He's more concerned about the belly pain, which is still an issue and thinks it's the tarceva. He's totally right about the tarceva but TOTALLY wrong about the heart.

Later that day his colleague Dr. Miller comes in with Amy, the echo cardiogram confirmed something is in my heart, I have to see cardiology to determine what it is. But the two possibilities are blood clot or cancer. Ugh. All I know is, I felt stupid for going to the hospital for silly belly pain and now I owe an eagle eyed cat scan tech my life cause he spotted a huge problem when he was only supposed to be looking at my stomach.

So cardiology comes in and he's this lovely young doc who reminds me of our friend Sam who we went to school with, who also just happens to be a doctor. I immediately like him, he is easy to talk to, honest and I understand everything he is saying. No doctor speak. He draws a pic of my heart and shows me that in one of the top chambers there's a 1cm mass. (This whole drawing my organs so they can show something wrong with it, never gets old). Now because of the older January scans that I took, esp. the pet scan, the likelihood that it's cancer is small. This makes me happy. 1) who the fuck wants cancer in their heart? 2) and if they missed it there where else did they miss it?

It's most likely a blood clot, but they have to really look at the scans and determine for sure. So he was just telling me what they were looking for. So he leaves to go study my scans. A few hours later he and his attending (I think that's what she was) come in and say in their opinion it's a clot but the scans aren't great images. They are going to consult with radiology to see if they think I'll benefit from a heart MRI. So they are going to conference with them tomorrow, until then I'm going to just sit tight and wait.

So while I'm waiting I work out my belly situation, Dr. Miller likes my attitude. I'm in no rush to get home, I'm taking the clot news well and he's impressed with me. UNTIL he asks "have you had any diarrhea today?" "Not yet." "Um, way to be positive!" Ha!

So after we adjust a couple of meds and I talk to the nutritionist the belly starts to work itself out. Though one funny thing happens, I have a high heart rate (pulse). I always have no one has ever addressed this before because my BP is usually 120/80. The nurses are rather shocked by it so they hook me up to a heart monitor for two days. Now as you all are painfully aware, I have vasovagal syncope. So my heart rate goes up when I try to stand up when I'm dehydrated especially. So every time I go to the bathroom I set of the alarm and the nurse comes running. Well she quickly gets used to me and every time I get up I hear the alarm go off and she yells, "she's just pee'ing it's ok!" It was quite funny.

Now the reason the nurses are amazing is they take wonderful care of you of course. But every single one of them, after a doctor or nurse practitioner came in to explain something to me, they came in after them to make sure I understood what I was told AND to make sure I was emotionally ok. Yeah, that's incredible!!!

Ok so while they are confirming there's a clot, there's another issue. Now the way you resolve a clot like the one I have is you basically wait for your body to dissolve it, but you inject yourself with blood thinners so you 1) don't develop any more blood clots, which I'm at risk for being a cancer patient and all and 2) so the one you have doesn't grow any bigger. And the blood thinner they give me? Good ole Lovenox! The one that helped me bring Sophia into the world. I'm like piece of cake dude!

Well not quite, before I can take any anticoagulant, I have to talk to neurology. Cause I have these mets in my brain and they have to make sure I am not risking any brain bleeding. So they send me a neurologist. Of course she's young and gorgeous, Sloan may be taking care of me, but they seem to like to make me insanely self-conscious too! She's sweet and asks me all kinds of questions about my symptoms and she's happy I had no neurological symptoms at all, that all I had leading me to my cancer diagnosis was a cough. Then she says, "I have to ask you some silly questions but bear with me."

"Who is the president?" "Obama" "Who was the last president?" "Bush" "and before him?" Pause, why do I want to say Gore? "Um, Clinton right?" "And before him?" Is she kidding me, I can't remember what I had for breakfast! "Bush senior". My husband the high school history teacher is looking at me like I'm such loser for taking so long to respond, but really, you try being dehydrated and learning about a brand new major medical problem and see how well you do with your political history! Then she tells me to remember three words "piano, green, honesty" which I say to myself over and over again cause I'm not getting this wrong! I have to do a lot of motor things, which are easy. I have to move my eyes a certain way, I have to do weird things with my feet. She wants me to lift my legs and now I'm like, honey I can't do that normally! Then she asks me to recall the three words "piano, green, honesty!" Whew! She then hits a tuning fork and puts it on my hands and feet individually and each time I have to tell her when the vibrations stop, they never stop so I never say yes. And she says "wow you are doing awesome!" So whew! My brain is ok! And I get neurology's ok to have the Lovenox.

The next morning the entire neurology department stops in to say "hi!". Literally, they said nothing else, just shook my hand and wished me well. I'm sure that visit cost my insurance 600 bucks.

Oh so then it's Thurs and I'm still waiting for my heart MRI, which I'm convinced will be a cake walk. Oh boy, was I wrong. It's a nightmare. I'm in the MRI machine for about 90 minutes and I have to hold my breath 18 seconds at a time for about 50+ times. It's awful, I'm wrapped like a mummy, I have stuff on my neck and chest and I'm sweating like a son of a bitch. I come so close to squeezing the panic button, it's not funny. This is by far the worst test I've ever taken! I've never been so happy to be done with something. But when I get back I'm a big shaky mess and they are like, ok you can go home! And I'm like right now? Can't I take a nap or something?

So I go home on Thurs. afternoon with a new prescription and a new problem. On the one hand I keep learning that I have to keep "re-surrendering" to the universe. On the other hand if I didn't have that belly pain I would never have known about this blood clot and goddess only knows what would have happened then?

So Sloan has room service. You can order whatever you want, whenever you want. The menu is off the hook. If you can eat, you can eat like a king. My belly was a mess so I ate their blandest things. And they will really work with you, it's great. Esp. once the nutritionist taught me how to eat. They also have patient activities like knitting classes, makeup lessons, dream catcher workshops, mixers and dances. It's crazy! You apparently can also get your hair done too. I couldn't stand up for very long so I didn't get to enjoy any of it, but it was cool that it was there.

Also since my symptoms were treatment related I could have any digestive meds I wanted and the nurses were always making sure I wasn't suffering needlessly. I knew everyone by name and they knew everything about me. It was awesome. I mean no one wants to be in the hospital, but I didn't mind being there and I was really in no rush to get home. Sloan puts SIUH to shame. TO SHAME YO!

Well I'm home now and I'm feeling much more like myself. We also have some plans to get through the next chemo and hopefully we will head off any possible dehydration at the pass this time. And now that I'm more educated about my digestive system I will hopefully be on top of it this time and will finally get the hang of this whole I have cancer thing!

As for the blood clot, I'll likely have a scan or sono of some kind in the next month or two to see how it is. For the record it was likely caused by the port. The port I wasn't thrilled about getting. No one told me that a blood clot in the heart was a risk. I'm not happy about that. But I do like the port and I prefer it to them poking my veins, but really, someone could have mentioned the whole blood clot thing! I'm a little pissed.

But beyond that, what can I do, it is what it is. And I'm at risk for clots whether I had a port or not. But so far it hasn't gotten me down, esp. now that my stomach isn't killing me anymore. It's funny how my attitude is very much connected to my stomach. I'm such a fat bitch!

Tuesday, March 22, 2011

It's the nutrition stupid!

So I have this deep dark secret. I don't hate vegetables. I know that's shocking, but I don't. My friend Jessica called me out on it last year when we were away in Virginia together and I was raving about the shrimp and avocado appetizer we'd had the night before. It's true, I don't. I just am insanely picky about how they are prepared so it's easier to just tell people I don't like them. Instead of saying, sorry it's just I'm not into boiling them, please don't take it personally...

The problem with that is people take that as a license to talk to you like you're 5 years old. Which is really annoying. You just want to say you know my girlfriend makes this spinach appetizer that I pop like cheese doodles and my sister-in-law has a cucumber soup that is amazing AND she has a roasted balsamic asparagus recipe that I have not only stolen but make several times a week. But I keep it to myself and stay a closet vegetation liker. I love sweet potatoes, corn on the cob, and one of my favorite salads is baby spinach and pears with goat cheese. I also love berries, avocados, peppers, apples, pears, tomatoes, carrots (raw only, I hate them cooked for some reason), celery, mushrooms (all kinds), squash, among others. I do however HATE bitter veggies. I mean really, WTF is up with okra? Peas taste like plastic to me. And I'm not a huge fan of oranges (except blood oranges, I like those.) Oh and I LOVE beans, though they don't count as veggies I know.

Now I don't mean to imply that I eat healthfully. I do not! In fact if the fate of the human race depends on how fast I can polish off a bag of potato chips, you are all safe my friends. I am a lazy eater, I'd rather eat what is convenient than make myself something healthful. Which is the worst kind of eater you can be, quite frankly.

But I'm getting completely off topic here. So since chemo 3 my stomach has been crazy crampy. Every time I put anything in my belly, food or liquid, it cramped up something awful. Kinda like I did too many sit ups or something. (Not that I actually know what that feels like.) I didn't think anything of it because the anti-nausea meds they give you at chemo can also have the same affect. However, it kept getting worse and worse. So I ended up in the hospital again, this time we wisely went to Sloan where my oncologist decided to admit me cause I looked terrible.

I was adamant that it was food poisoning again. Which my doc didn't buy for a second. But the truth was I just didn't want the answer to be that it was finally the meds having their way with my stomach. Unfortunately that's exactly what it was and I was angry. I felt completely out of control and I was scared that I'd have stomach problems for the rest of chemo, which could last another 9 weeks.

So since I was stuck in the hospital for the blood clot they found (more on that in the future) the docs decided to use that time to sort out my belly situation. This was important cause it's my belly issues that keep causing these dehydration cycles that have landed me in the hospital twice now. So in addition to lowering (slightly) my tarceva and steroid doses (which was causing the major cramping) they also sent me a lovely nutritionist named Clarissa.

Clarissa was the first person to really explain how chemo messes with your digestive system and I had lost the ability to digest normally. So when I ate a "meal" in the traditional sense I felt like it was sitting in my stomach for hours because it was literally sitting in my stomach for hours. So now I eat one thing at a time. Which is great, cause I can now digest it and if I choose something that doesn't agree with me I'll only suffer for an hour instead of 4 or 5 like I'd been. She also addressed that I was drinking incorrectly (yeah there is such a thing). I wasn't sipping throughout the day AND I shouldn't drink while I eat. She also said the reason I hate drinking water is because of the awful copper taste in my mouth, so she gave me some tricks to avoid that. And she also didn't love the idea of always drinking water. So I added things like Ensure and juices.

She also informed us (6 weeks too late) that the steroid I'm on is depleting me of potassium (one of the things they keep having to pump me with at the hospital), so that was important. So now I have to drink at least two glasses of orange juice, one Ensure and eat one banana a day. This was big, cause we were so focused on me drinking water that we neglected the electrolytes and gatorade really doesn't have that many. So now I'm feeling SO much better!

So now I eat one thing every 90 min or so. And the things that feel the best, not surprisingly, are strawberries, bananas, apples and applesauce. These are things that require no experiment, I know I can eat them no problems. And I feel better after eating them. Naturally.

Most importantly I feel in control again. So whew! At least I can eat again. I just take it slowly and experiment. So like eating out is tricky cause any other oil than olive oil bothers me, so no Cheeseburger, Cheeseburger for me. But I can have my mom's chicken cutlets and scrambled eggs.

Oh I'm also supposed to avoid whole grains (because of the symptoms caused by the tarceva) so I just got permission to eat white bread again. Woohoo!!!

But man, this is what I get for not researching on my own. But I totally want to hug Clarissa for giving me my stomach back. Hooray!

Wednesday, March 9, 2011

Up-date on the face

So I got my face back and I'm quite pleased about it. While I was at SIUH, since I was there for about 5 days, they decided to send me a dermatologist to talk about my face. Yeah they had no clue what to do so they gave me 1% cortisone. Which actually seemed to help a little bit. But because of the anchovy incident I had to postpone my Sloan dermatologist apt. for another week. So that ended being last Thurs. March 3rd.

As soon as I walk in, everyone is all smiles, I'm like, ok once again Sloan rocks the house. They are just super friendly. The nurse is all laughs and we go over all of my symptoms. She takes a sample of skin from my face, just by scraping it. And it feels SO good, you have no idea how much I love clawing at my face. And she jokes that the scratching is for free, and promises she won't charge me though I'm clearly enjoying it. I'm telling you, it was a fun apt. And then we meet Dr. Loucoutre. He is fascinated by us, he knows I'm of Italian decent, but he's confused by John. He has an Italian last name but the Doc doesn't think he looks Italian. And then he accuses him of being "Northern Italian" which is funny, cause John's 1/2 Sicilian like me.

The doctor is from Italy but he's been here a long time. He's young (what else is new?) and crazy handsome! And has that overconfidence that I kind of like in a doctor. But he has that Italian pride. He wants to talk about the size of our families and if we're all close. He praises us for having big Italian families who get along with one another. He reminds me of John's Uncle Johnny. Uncle Johnny is from Italy, has a beautiful Italian accent and is beaming with pride. The first time I met him he pulled out a poster featuring famous Italian-American athletes. I fully expect Dr. Loucoutre to do the same. Now I used to be all "I'm Italian, blah, blah, blah" but the truth is I'm pretty darn American. The only thing Italian about me is I say "mopina" instead of dish cloth. I don't make a Sunday sauce and my meatballs are horrendous. But I make killer chicken chimmichangas!

Anyway, I digress. Turns out the doc has a ton of patients on tarceva, so he knows this face thing, it's not new to him. Again, I'm not unique here, I love that! And then he tells me something interesting, that disgusting crust that had developed over my face that was bleeding and making me sick just looking at it, well that was an infection. That was not a normal tarceva reaction. Turns out the antibiotics they gave me for the food poisoning is the reason my face started to clear up, not because of the cortisone they gave me. I was like, wow! But that's good to know, if I get the ickiness again I can take a pill for that. I was thrilled!

Then he tells me he's got two creams for my face, two shampoos for my maddeningly itchy scalp, a lotion that I totally do not understand that says it's for the palms of my hands and the soles of my feet. I have no idea why I need this (maybe it'll help me make better meatballs?) and something for my nose which is also being affected by tarceva. I was like, shit this dude is GOOD!

Then he eyes a mole on my arm and doesn't like the look of it. And he tells me it has to be dug out. Normally I would not let a derm do it, I'd actually get a surgeon, but this is Sloan and this guy actually seems to know what he's talking about so I say go for it. He very sweetly tells me not to worry, most moles are nothing but better to remove it being overly cautious than vice versa. I nod but honestly I'm thinking, dude I have Stage 4 lung cancer you think you can scare me?

BTW I learned today the mole is benign. But now I have 2 stitches in my arm, the first non-desolvable (sp?) stitches I've ever had outside of my mouth. I don't know why I felt the need to say that, I guess I feel like I'm not getting enough sympathy or something! ;)

But it's been a week with the new creams and my face is SO much better. Most of the bumpiness is now gone. It's still red, but red is nothing. Plus it covers nicely with foundation and color corrector, so on days I'm self-conscious I can just slab on some makeup. But honestly, it looks great. And now that it's improved everyone is saying things like "Wow, I can't believe how good your face looks." So everyone was def holding in their horror of the crusty face I had developed. I'm just glad that wasn't normal. Because I had been researching it online and no one said anything about having their face buried under a volcanic crater. And turns out SIUH did something right without even realizing it. They accidentally cleared my face. Which is kinda cool.

So let's here it for the Italians. HA!

Chemo 3 - Elation

Ok so on Monday night I went to bed and I had this thought. I had a cat scan and a brain MRI scheduled for Tues. afternoon. All of a sudden I was thinking, well I have these scans tomorrow I should do something. As in pray really, really hard or something. Now look, you know I believe in the power of prayer, but that's not what I'm talking about. I mean of course you should pray for your good health. But I was thinking about all the "begging" I did back when I had my pet scan and first MRI. That's not the same thing. This is that feeling of, "if I don't do it, I'll be sorry" feeling. And that's not a good mind space to be in. I felt like I was regressing or something.

But then I remembered what my internist said "this is a journey and each stage comes with it's own anxieties" and she mentioned that when you start getting scans and test results it all comes back. So I stopped before I got my mind into that "oh please, please, please" place and instead said, hey whatever comes my way I can handle it. And I really believed it, like yeah it's ok whatever those scans say, I can do this.

So I get to Sloan in the afternoon and I have to drink this contrast that tastes like very watered down Hi-C. But it was tolerable. Then I go back for an IV and I tell them I have a port. Now we have to find out what kind of port for the special dye that they need for the cat scan. Turns out I have a brand spanking new "power-port". Yeah bitches! It means that it can be hooked up to automatic dye injections. But when the nurse tries to access it, it's not giving him any blood return. So he has me raise my left arm over my head, hold out my right arm out to the side and cough. Son of a bitch it works! I'm crazy impressed!

First up is the Brain MRI. But my re-surrender the night before worked, instead of crying and thinking about brain mets, I spent 25 minute hotly debating how to spend my birthday money. I was like, well there's this pocketbook I like, but then maybe I should get a rain coat cause it's more practical. And then I said to myself (and literally almost said out loud in the machine, which would have been funny) "it's birthday money, what am I buying something practical for?!!!"

I waited for ages for the cat scan and the room I was in was ice cold. The nurses were like, this building is crazy cold here's some heated blankets. Every office in Sloan is ice cold. So I'm now convinced that air conditioning PLUS Sloan pretzels, cures cancer. Cause I otherwise can't explain the ice cold office in winter.

Anywho, the cat scan is pretty fast. I almost broke their machine because my pants had metal buttons on the ass that I didn't realize were there. Honestly, I need a mirror to see my ass, so whoops! But after about 20 min, I am free to go home. John and I went to Golden's deli cause we haven't been there in ages. And it turns out I can't eat there without having Cousin Brucey's voice in my head yelling "They're DEEEEEEEE-licious!" It wasn't bad, I had an egg cream for the first time in years.

Then today was chemo 3 and I saw my oncologist. I am in the office waiting for him to come in for about 30-40 min. Which I'm not thrilled about because after him I still have 6 hours of chemo to go. And as I'm waiting I'm going over all the questions in my head that I have to ask him. It's not until about 20 min into waiting that I remember, he's going to tell me my scan results. I actually forgot that's why I was there. Now that's some serious surrender yo!

So a new young, lovely doc comes in and introduces herself as Dr. Krug's fellow. I forgot her name, but I immediately like her. She sits down and smiles and says, "good news first, your scan looks great! There's significant shrinkage. We are on the right track and the meds we're using right now are working well. Ok now tell me how you're feeling." We're all smiles and I tell her about some things and then she goes to get Dr. Krug.

Now I'm like, ok what does significant shrinkage mean? I mean she's smiling so I know it's good, but like how does it actually translate to sizes? When Dr. Krug comes in he's smiling and he is excited that it's shrinking across the board. The brain mets have really responded as well as the liver and the lungs. So the assumption is the bones are too, even though they were not specifically scanned. And then he says "They are all less than 1/2 their original size." I was like dude that is not significant shrinkage that is, in the immortal words of Charlie Sheen, "D'uh Winning!" I could not believe it. In 6 weeks, really!!!

Ok not running into the chemo ward and tackling nurses with bear hugs took a lot of self-control. I was seriously the happiest person in chemo. And not just cause I pee'd like a champ today! So I didn't get my cool chemo room today, I got an area with just a curtain instead of my suite with the bed. But it's all good. Plus we played around with my new iPad, which I am so not cool enough to own! But my in-laws bought it for me for my birthday. Mostly because they are truly insanely generous people in general, but I fear they feel guilty about the whole poison anchovy thing. They keep apologizing to me about it. First of all, it's no one's fault except the people who canned the damn anchovies and my mother-in-law had to deal with her son and granddaughter barfing all over my house. AND my father-in-law was almost as sick as I was! All I know is I somehow scored an iPad!

So we played Trivial Pursuit, in which I mounted the greatest come back in history! And then my mom slaughtered us in not one, but two games of Yahtzee! No movies this time. Maybe next time we'll watch What's Up Tiger Lily? It's a classic that I highly recommend, I haven't seen it in years. I'll have another set of scans, probably in about 6 weeks. Again to see about the brain and if I have to have radiation. But I'm going to ride this high for a while and buy that damn pocketbook! :)

To everyone who has taken a moment to think of me and pray for me and more. I owe this all to you! It's the love that keeps me riding high!!!! Love you guys!!!!


Monday, March 7, 2011


Ok so the whole time I was in the hospital I had these 3 jokes stuck in my head. One of the nurses had told me she liked that I loved to laugh, so she told me a cute joke. I wanted to tell her one in return, but I don't know any clean jokes. So I just laughed and gave her nothing in exchange. These were the three I wanted to tell her but didn't want to offend her either...

Lawyer: "Mickey, I found a judge who will grant you a divorce, but not on the grounds that Minnie is crazy."
Mickey: "I didn't say she was crazy, I said she was fucking Goofy."

Two nuns are driving back to their convent very late one night. All of a sudden Dracula jumps onto the hood of their car to attack them. The nun driving swerves to the left, swerves to the right, back and forth and can't shake him from the hood. She yells at the nun in the passenger seat "Quick! Show him your cross!" So the other nun leans out the window and yells "Get off the FUCKING car!"

Man wakes up in the middle of the night to a knock on the door. He opens the front door and looks around, doesn't see anyone until he looks down and sees a snail with a tie on. The snail says, "Good evening sir, could I interest you in a magazine subscription?" The man is furious and kicks the snail off of his porch.
Two years later there's another knock on the door in the middle of the night. Man opens the door, looks around sees no one until he looks down and sees the snail. The snail yells, "Now you wanna tell me what the fuck THAT was about?"

Thank you, I'll be here all week. Try the veal!

Funny moment of the week

I have nothing to blog about this week, but there was a funny moment that I'll share:

John is in the shower and I hear him scream.

I run into the bathroom, "What's wrong? Are you ok?"

"My scalp is burning, I think I used your medicated shampoo by accident."

"Really, cause my medicine doesn't burn."

"Oh nevermind I used the Pert."

Turns out Pert 2 in 1 makes a menthol shampoo cause you just have to have the smooth menthol flavor. Weird.

Wednesday, March 2, 2011

One of the Crowd

Ok so the experience at Staten Island University Hospital (SIUH as it's known in the hood) made me think more about Sloan and why I'm glad I'm there.

I mean when you're in NYC and you get diagnosed with cancer you have a million choices, we are very lucky here. If you don't realize how lucky we are, a woman landed in NYC yesterday from Haiti. She has Stage 3 breast cancer and the only radiation center in Port Au Prince was leveled in last year's earthquake. It took a year but Kirsten Gillebrand got her treatment here, so that she can live. Think about that.

So for me Sloan was a no brainer, not just cause Dr. Chaloub wanted me to go there, but because I was already in their system as a "previvor". Now the way Sloan works is you call an 800 number and you tell them what you have. They will give you a fax number and you fax them all kinds of test results. Then they find a team available to help you and you get a call with a name and date and instructions of where to go. You then go to the accounting department, they take all your insurance info and the names of every elementary school teacher you ever had and you get your Sloan card. I already had one from my first apt. with Dr. Mangino, my breast surgeon who monitored me for breast cancer. Last year she saw a mole on my leg she didn't like, oh why, oh why did I never cough in front of her!

The advantage to a place like Sloan is it's huge, I was diagnosed on Thurs. 1/20, had my first oncology appointment on Mon. 1/24 and my first chemo appointment was Thurs. 1/27. They got me started on my treatment within a week. Because they can. SIUH would have taken more time to find a chemo slot, I would likely still be waiting to get a mediport installed. That doesn't mean the quality of care would be less there. SIUH has great oncologists and cisplatin is the same no matter what borough is it administered.

But let me tell you why I really like being at Sloan. No matter what building I walk into, no matter what kind of doctor I'm seeing, no matter what nurses or front desk people or PA's I come across, they all have the same attitude. "What's your diagnosis?" "Stage 4 lung cancer." "Oh welcome to the club, we've got t-shirts."

I'm not unique, I'm not a carnival attraction. I'm an advanced stage cancer patient. This is what Sloan does. All around me are people in a similar or even the exact same boat as me. You have a symptom, we have a solution. You have a need, we have someone for you to talk to. But you're among friends, friends with a sucky disease, but friends.

At chemo we all look the same. Super short hair but smiling. We're drinking our drinks, writing in our totals on our hydration chart. We emerge from the bathroom with a smirk cause we just did some damn good pee'ing and I get to put a big ole 600'ccs on my chart and get that "good job!" from my nurse.

I am still debating whether or not I am going to blog about it, but I went to a healing mass at my parents' church at their request. I went because they wanted me to go, but just because I'm not Catholic doesn't mean I don't respect and believe in the power of the healing mass. I would explain why but I am afraid if I post too much of my pagan logic, people might get offended by it. Only cause we use different words to describe things and we pagans tend to make things sound a little silly. But the power of this mass was not lost on me.

But the most powerful part of the mass was seeing my old friends from high school. I went to high school with Christine, but I also got to know her sisters and mom very well. John and I had our very first kiss at their New Year's Eve Party 1993. They are the most wonderful clan of women and I love them dearly. Well last year their mom was diagnosed with lung cancer and like me it's in both of her lungs and brain. Her cancer almost killed her, I had a nagging cough. When I was first diagnosed, she was the very first person I thought of.

Knowing I had sister in this fight is part of the reason I was able to keep it together. If she could face this with the courage and grace that I knew she was, I could do it too. So part of my reason to go to that mass was to see my sister soldier. When she walked in, it took everything I had not to run like an idiot across the pews. We went over and we all embraced. But embracing her was like nothing I can explain. It was powerful and beautiful. And the best part, the smiling, the comparing of port sizes, the hair length discussions, the sticking our tongues out when the words "brain radiation" were uttered. You see we're both on the other side of surrender, so these conversations come easily, they flow like talking about the weather or the price of milk. She spent most of the mass looking back and me and John and winking at us.

At SIUH I was a minor celebrity. One of the docs who saw me in the ER on Wed. told us that he was behind the scenes the day I was diagnosed and they were looking for that nonexistent PE (way back on 1/20). He was one of the docs trying to decide what to do with me that day (they had flirted with the idea of admitting me to stage me and then decided to let me just go to Sloan). I don't mind that he came to see me. I minded the pity with which he looked at me, the "aww" he gave me when he asked if I had children. I mean not only was I in the midst of my body giving out on me, but now I needed this guy to remind me that I have advanced stage cancer. I kept wanting to say "I'm not terminal yet you asshole how about you help me with this whole diarrhea thing or you can just move along!"

You see at SIUH I wouldn't have been the only cancer patient being treated, but I would have been the only Stage 4 lung cancer patient under 40. And I just don't want to be unique. I like being one of the crowd. I like knowing that Mrs. Kim will always be across the hall from me at chemo, with her port that she didn't want either and 6 hours of peeing her brains out. I like blending in, it's nice.