Tidbits...

OK so last we spoke, or more accurately last I blogged...

I had a mucus plug that rendered me useless and pathetic but alerted us to the fact that the Clinical Trial wasn't working.  So now I am on traditional chemotherapy.  I am on two drugs, Pemetrexed (or Olympta) which is the $10,000 ten min chemo I got last year and Carboplatin which is the sister drug of Cisplatin that was the 6 hour 200 dollar one.  But Carbo is only an hour and has fewer side effects.  I have one more round to go, but I'll explain more about that in another blog.

But we need to back a little further today to talk about the lung fluid.  So I could not help but notice that from the late Winter to Spring I was having trouble breathing.  The only things that my scan had showed was two lymph-nodes that were growing, but that wasn't enough to cause breathing trouble, which was good to hear.  I didn't want to find out that the cancer was taking over my lungs.  But I still couldn't breathe.  So they gave me a chest x-ray and found I had a boat load of fluid in the Pleural Sac that bathes the lungs.

When you have lung problems, your lungs lose the ability to regulate the normal things, like how much fluid you need to keep your lungs wet.  So the extra fluid I had was causing my left lung to not fully expand.  The doc says I need to have the fluid drained.  So they made me an apt. for a Thoracentesis.

I was told I could have breakfast, so when I tell the nurse I had breakfast, she is pissed.  She calls everyone and their brother in law to find out who told me I can eat.  She says to me, we can't give you anesthesia, and I said "I am only supposed to get a local."  So she tells me she has to call the surgeon to see if he'll do it with a local.  He was like "are you kidding we used to only do it with a local, what are you giving her a hard time for?"  So I suddenly get a new nurse, which I don't really understand, I was cool with her, she was just doing what she understood to be the new outpatient surgery policy, they now knock everyone out no matter what.  I think they do that so the recovery ward is quiet, but that's just me...

So I go in the OR and Dr. Maebody is like, look, this is how we usually do this, the only thing you'll feel is the needle with the Novocaine  it's just like a dental procedure.  So I'm like OK cool.  So after a hilarious 20 min of taping my left boob up, they get started.  It's true no pain from the procedure, but when they pop the tube in it feels kinda funky.  They drain 1.5 liters.  But truth is I did not feel any better.

A week later the doc sends me for another x-ray, fluid is back and worse.  He tells me I need a tube.  So they send me directly to the Big Hospital and it's perfect cause I haven't eaten all day.  But it's John's birthday, I feel a little bad.  Not too much tho cause I spent my birthday with him passing a giant kidney stone.  Now we're even.

I am sent directly to a room and my nurse keeps asking me if I am in for the Pride Parade.  So I can't help but feel like she's hitting on me, which made my day.  And she was funny as hell so if not for my need of John's medical insurance to stay alive, I could have had some fun, but oh well.

So I am finally sent to surgery, when I wake up I find out they took 2 liters.  Problem is, I can't breathe right now, I am choking on fluid.  Turns out they took so much fluid that it triggered a Pulmonary Edema.  I coughed my brains out and choked for about 7 hours.  But it does stop eventually and I am OK by about 1 am.  Now the funny thing is when I get wheeled back to my room and choking, my nurse is SCREAMING at the surgery nurses.  "What did you do to my Jaime?  She was all smiles before I sent her to you!!!"

Next day I am supposed to learn how to use the tube and go home.  Except that the Nurse Practitioner who comes is very ambitious and tries to drain another Liter.  Well she causes a pain to shoot up my left arm and I am in excruciating pain.  I wanted to kill her.  Now they have to run and get the EKG to make sure I'm not having a heart attack, so once they establish that the heart is fine.  My nurse, new one, my girlfriend had the day off, was great.  She explained that Nurse Mengela took too much fluid and the pain was my way of knowing that I should stop draining.  But now I have to stay an extra night.

So we walk around the hospital we find the craft room, but the good stuff was gone.  We find a balcony to hang at.  It's all good.  When I come home I have two visiting nurses who continue my tube training and they all agree that I not drain everyday, but every other and when I get even a glimpse of pain, stop.  So I am very happy that the nurses are understanding the process and my feelings.  And they train me to be a pro.

When I start out draining I am draining 900 ml every two days.  And that is when I suspected that the clinical trial wasn't working.  So then I had the mucus plug incident and my suspicion is right, nothing is shrinking.  So   I am going to switch to real chemo.  Which makes me happy cause now I have a good shot that the fluid will start to reduce.  And sure enough with the first round BIG change.  I was draining 400 ml every other day.  Right now it's a lot less, BUT I can't get my hopes up yet cause I have to drain small for a few drains in a row.  I'll report when that starts to happen.

But yeah so I have tube sticking out of my side.  I had a stitch that kept it tethered to my side, but that stitch was awful and my body literally rejected it.  But my body has had it for so long that it's now apart of me and my tissue, so no stitch necessary, whew!  The part of the tube that sits flush within my side before looping over my rib, itches every now and then.  But the real enemy is the tape that I use to keep on the gauze.  I'm allergic to everything but paper tape.  Paper tape means there is no waterproofing, so I have to constantly change the bandage.  But now I have had it for so long that a bandage consists of one sq inch gauze and three pieces of tape.  The tube I let hang, I'm sure it freaks people out, but I have to have some fun!

So that's the story of the tube.  When I drain 50 ml for three straight drains I can call the surgeon who put it in and we can talk about removal.  So hopefully that'll be my Christmas present this year.  But all in all, considering I have a tube sticking out of my chest that I have to keep clean and I pour out fluid from so I can breathe better, it's not that bad.  The whole process take 10 min every couple of days.  And it's something I can do for myself and I don't have to have a battery of docs and nurses to take care of it.  It's my thing.

And I can't lie, sometimes I enjoy swing it around like rich cartoon guy, chest out,  in a top hat swinging around his pocket watch.

The Last 36 hours

So yesterday was round 4 of the clinical trial.  I get there early, have a nice breakfast at Pret A Manger, and get to Sloan at 11 am.  I have my echo cardiogram (for the trial stats) and get weighed for the pharmacy to mix my treatment, I lost 1 pound, so I'm down 39 total now.  I have been stuck here for like 2 months, but whatever it's a marathon not a race, right?  That's fat girl code for "I LIKE DONUTS ALL RIGHT!"

So we get to the chemo suite around 3 but they aren't quite ready for me which is cool, I pop in Waiting for Guffman and relax.  The nurse comes in and I lay down so she can access my port (my port is tricky so I have to do little tricks to get blood return).  Well she pops the needle in and I barely feel it. And if that wasn't enough, she gets immediate blood return, I was like you are amazing!  Then she hooks up the saline and things go crazy from there...

She did hook up the treatment, but before she started it I started coughing.  A cough similar to the cough I had before I was diagnosed.  It was confusing, I haven't had that cough in 15 months+.  Plus I kept feeling like it was on my right side for some reason.  Now as usual, at first I didn't think anything of it.  But John noticed the cough right away and looked at me.  He could see I wasn't feeling right.

Then I start coughing uncontrollably, and the oncology nurse comes in.  I try to tell her the sequence of events and the chemo nurse thought I was blaming her, when I was just pointing out it coincided with me getting the saline.  The doc then comes in and recommends albuterol in a nebulizer and after a few min, I still didn't feel well.  Now the chemo nurse is annoyed I'm making her late for lunch, sheesh woman, why are you not on the Sloan program, bitchiness is not allowed!

So the doc who runs the trial wants me to wait but I still feel awful and my blood oxygen level is 91% which is cruddy.  And then my husband says, maybe your blood clot broke off into your lungs?  Let me tell you something, there is nothing more comforting that hearing, "Maybe it's just a pulmonary embolism?"  So the doc says it's probably a mucus plug and I'm looking at him like "What's wrong with you, didn't you hear my husband, I'm about to die!"

Now I am convinced I will die and breathing gets harder.  So instead of keeping my cool, I just get worse and the doc says we have no choice but to send you to urgent care by ambulance.  The two paramedics who take care of me are awesome.  Steve and Mark.  They assess me but are calm, which made me say, ok so I'm not dying right this second.  Then Mark takes my BP and says well I'm about 97% positive that you are alive, and I laugh and happy to discover that I can muster up enough breath to laugh.

Steve doesn't like my measly 91% and they have me hop onto the gurney.  We get into the ambulance and Steve drives, no sirens just lights.  No racing thru the streets, now I'm saying to myself, I'm a loser, I can't believe I'm here.  But Mark is joshing us cause we're from Staten Island, which is enjoyable.  Then John mentions how much fluid I drained the day before from my Pleural Cath (I know, I know I never wrote that blog).  So John says "You drained 400ml right?"  and Mark goes "400!!"  And I said "well they took out 2 L when I got the tube placed."  And Mark says "Look lady I'm not criticizing you, I'm just sayin wow!" and I laughed like crazy.

So we get to Sloan urgent care which is 15 blocks north of the 53 street center where my doc and chemo are.  Steve pulls me out of the ambulance and says, how are you feeling, and I say "actually better."  "Don't just say that on my account," he says.  We enter urgent care and it is PACKED!  Of course it is, it's Monday.  I wait for around 5 hours, but in SI that's normal for any doc apt. let alone the ER.

So I'm waiting and waiting, can't watch the Olympics cause I have the ONE television with no NBC!  (When you're in a hospital where everyone is on the same cancer playing field, you can bitch about stuff like that!) By the time the doc gets to me I feel 100%, which only embarrasses me more.  The doc is great, I've seen him before, he's the guy who told me I had a "touch" of pneumonia, but I didn't remember his name.  He says it's either a clot or possibly a mucus plug.  So now that I'm calm we finally ask what that is.  And he tells us that our lungs always have mucus, it helps us keep dirt out of our airways.  But when you have lung cancer mucus can sometimes gunk up and block an airway and your body feels the need to cough it out.  As soon as he says that I'm like D'OH!

But he also wants me to understand the scope of what having a clot in the lungs mean and he's not ready to call it a mucus plug until he knows for sure, "Ok?"  "Yup, I get it!"  "Good and now is probably not a good time to tell you this but my name is Klotz," and he flashes his name tag with a smidgeon of shame.

So I get a Pulmonary embolism Cat Scan.  I don't know if you remember but this is the cat scan I got the day I was diagnosed.  It requires a larger needle in the forearm and results in the same big black and blue I got Day 1.  It also requires an IV contrast that makes you feel like you just pee'd yourself.  But as long as it confirms the mucus plug theory, I don't care if I really pee myself.  Which it happily does (but my pants stay dry, whew!).  And we get home just before midnight.

Funny thing is I have to go back the next day to see Dr. Chan (who is in the 68th St building) for a follow up apt that I missed last month because I had become quite fond of vomiting in the car.  So this morning I wake up and get back on the Sloan horse as it were and am wondering if I will be allowed to get chemo today at 53rd.  So we're at breakfast waiting for my apt. with Chan and Krug's nurse Allison (not the one I have the girl crush on, she's in the chemo ward now) calls John's phone.  So Allison says no chemo today, 3 tumors look a tad bigger.  Suddenly we're all a little bummed.

So we see Dr. Chan, who could cheer up a concentration camp. He comes in and says "Hey!  How's it going?  So your last brain scan (from May) looked great, not only is everything stable but the little ones have completely disappeared."  He's like BOOYA!  I love him!  So we schedule my next MRI and follow up (Nov.) and back to worrying about the 3 tumors.  But I think to myself, radiation is an option and I'd be in Chan's hands and I feel like ok I can handle whatever this means.

We get home at 1:30 and Allison calls back.  Krug looked at the scan from Urgent care.  Everything is stable except for those three tumors but the growth is nothing to panic about.  However he thinks it's a good sign that the clinical drug isn't working so let's not waste any more time on it.  Therefore on Monday I will start a traditional chemo, similar to what I did last year.  John kisses my head and then calls the troops to tell them the news.

While I'm listening to him call the parental units, I think Hmmm, funny how my lung decided to gunk up at the precise moment I was about to receive a therapy, that unbeknownst to anyone, wasn't working.  And then I thought, you know what I'm down, I get it.  Stop worrying and just believe.  Again don't know what the future holds and I know death is the likely outcome.  But damn if that's not something to hang on to!

Things I never thought

...I'd be comfortable with pre-cancer.

Chemotherapy

Being strapped down to a table by a mask on my face

Getting blood tests without wanting to pass out

Throwing up regularly

Having a port

Plucking my eyelashes

Having a tube in my chest to drain fluid at home

and my favorite

Standing naked in my kitchen putting Glad "Press n Seal" on my stomach to protect the tube in the shower

As drug side effects go...

Tarceva has by far the weirdest one ever.  "Unusual eyelash behavior".  I'm so not kidding.  The first time I was made aware of this fact was when I was getting prepped for a cat scan.  The nurse placing the IV was looking at my eyes, I thought she was concerned about pink eye or something.  But she explained she was looking at my lashes because people who are on Tarceva for a long time have beautiful lashes.

I was like "for real?" and she said, "Oh yeah, just wait."  She wasn't kidding.  My lashes are longer and darker.  Not much fuller though.  But they look like they are perfectly mascara'd, no clumps but thick and rich.  It's so noticable that several people have mentioned it to me, asking me if their fake or if I have been using that lash medicine, Latisse.  (Interesting note about Latisse, it is actually one half of a glaucoma drug.  People who were using it for glaucoma reported that their lashes were getting longer and stronger.  So the savvy drug people isolated all the components to figure out what was causing this effect.  And once they nailed it they marketed it and will prob make more money on that than on the original medicine.)

Now what is so unusual about lucious lashes?  Well they don't just look fab, they actually can go a little haywire.  As in growing in the wrong direction.  So I have to pluck a few a week because they are literally jabbing my eyeballs!!  Yeah it's totally sexy and not at all painful.

The other "unusual aspect" is the texture of the lashes.  They are SO course.  When one falls out or is plucked I just marvel at it, it feels like a damn pine needle.

So I have to say, when it comes to weird side effects, Tarceva wins!!

But I'm cool with it, makes eyeliner look pretty damn good. ;)

Quick Update - Clinical Trial

So first off all the previously recognized tumors in the chest and abdonmen are stable. The problem is there are two lymphnodes that are growing and they haven't stopped. So that indicates I'm at the beginning stages of Tarceva resistance. So Dr. Krug said I can wait two more months to see if they keep growing or I can choose a course of action. But I really like that he put it in my hands.

So before anyone worries, here's the deal, the growth is not enough to warrant chemo or radiation. The way Krug explained it when u are on Tarceva, regrowth happens so slowly it's hard to know when to pull the trigger on additional treatment, but he felt comfortable to let another 2 months go and another cat scan before def taking action.

But there's a clinical trial that will add another drug (IV, every 2 weeks) to Tarceva to get it going again. I will not be randomized because I'm in the cancer regrowth catagory so I WILL receive the new drug.

Also I have a lot of fluid in my lungs (probably treatment related), which is why I'm tired and out of breath so much lately. So I will be getting that drained. That'll help me with how I'm feeling physically.

There is only one x-factor in all of this, my next brain scan (June 7) has to be stable. If not, I have to treat anything that is unstable and then reapply to the study.

As for how I'm feeling, at the moment I feel ok. I was prepared for worse to be honest. The way I'm looking at this is, we see a small change on the scan and we want to nip it in the bud before it becomes a problem.

Pink Goo Haiku

Raspberry flavored?
You taste like crap on a stick.
Yikes, I have to PEE!


(pink goo is what I drink for my cat scans)

I got moves like Jagger

I'm sorry, but Adam how can I take Maroon 5 seriously with a song like that? I know everyone loves it but I think it's ridiculous. First of all, Jagger technically doesn't have any moves. He learned how to dance from Tina Turner (a goddess among goddesses in my book, but I digress). Secondly, have you actually seen his moves? He looks like a neuropathy patient with epilepsy.

Take a gander: http://www.youtube.com/watch?v=7y-x2fWKbmo

And finally, look I know the man is talented and a music pioneer. But when the hell was it decided that he was sexy or at least STILL sexy? The man has had sex with anything with a pulse for 50+ years. And he treated his wife like crap (though I have to admit, wtf did she expect?) I don't get why anyone finds man whores attractive, with one glaring exception. Tommy Lee, yes he is a disgusting walking petri dish, but he's hot and is hung like a sperm whale. So feel free to fantasize away, I just wouldn't recommend seeking him out for a real life experience however. Unless of course you have a sexy Hazmat suit.

WTF is this about? How the hell should I know, I just write this thing, I never promised coherence.

So I was going to air all my dirty laundry about the last two weeks and how much they suck. And how much I want to strangle a certain someone. But I'm keeping most of it to myself, well except for this: I have to be the only cancer patient, who after a day of vomiting and pre-op testing, who can ask her husband if she can take a 10 min nap before dinner and be told "no". Now I know what you're thinking how is that even possible? I did too. So I attempted to nap in protest and the SOB kept waking me up every time I nodded off. Why? Because he thought it was important that I eat first. I told you I hurled my guts up already right? But he got his way and I ate my meatloaf angerly whilst falling asleep. Yes I know only a woman could achieve an eating emotion.

But no, I will take the high road and instead discuss my sex life (feel free to run away in horror, but stick around I might be funny). Now I know you're wondering why I had pre-op testing today. Well I'm having a minor, unnecessary, GYN, not cancer related, had no intention of discussing it here procedure on Friday. That is until my husband called me from work this afternoon and said the secretaries in the Dean's office are concerned you're taking an unnecessary risk to your health. I was like, "they what?" But I'm SO unreasonable when I'm angry.

Yeah so it's official no part of my life is private anymore. So to fill you in on the things that I had foolishly decided not to share previously, here you go. My menstrual cycle is still regular, according to my OB/GYN I'm still fertile (actually I posted that one on Facebook), I've actually read the Story of O, and I have seen How Stella Got Her Groove Back about 48 times, because Taye Diggs keeps showering and I keep watching... And I like Pina Coladas and getting caught in the rain, I AM into Yoga and they fried half my brain.

There you go my complete profile. Oh wait AND I'm getting an IUD placed on Friday. There I have nothing left. Why am I doing this. Well I can't be on hormonal contraceptives anymore thanks to Cletus (my blood clot). So I need a reliable, non-hormonal way to keep from getting knocked up. Because despite chemo's best effort, I still can get pregnant and I'm on Tarceva which would just be disastrous. So my OB/GYN and I decided on this method.

Now this led to a very uncomfortable exchange with my mother in law, that I kinda find hilarious. She and I have become closer in the last year and it's been really wonderful. Unfortunately for her it means I now tell her things I never would have before, like "oh by the way I'm having an IUD placed to prevent anymore grandchildren springing from my end." Amanda and Steven are going to have to make up the difference I'm afraid. But my nephew is the cutest so they should really make a million babies! But again I digress.

So my mother in law, concerned for my health and safety says. "Well why doesn't John take care of it?" And she asks this in such a way that I assume she means a vasectomy. So I say "Well because that wouldn't be fair. If I die, what if he and his new wife want children?" To which she said, "I was talking about condoms Jaime." And I said "Oh right..."

Come on that conversation is classic! I should submit it to OverheardinNewYork.com.

And in case you're asking that same question yourself, refer to the Sophia blog and my two major preggo scares. Guess what we used?

So today I had my pre-op testing. Some blood and an EKG, I could have done that blindfolded, standing on my head (NOT a reference to my aforementioned sex life). One nurse said that I would likely have general anesthesia (which I've never had) but then the nurse practitioner said later on that it would likely be just sedation (which I've had 3 times so far). But now John is freaked out and instead of putting me at ease, he's instead freaked me out too.

Now to be honest, between that and the nap, the IUD is quickly becoming REALLY unnecessary. However if Jason Statham ever decides he's into bald, fat chicks, I'd like to be prepared.

So I don't know what to do. Though I guess I should discuss it with the secretaries in the Dean's office. I was totally cool with this decision until John started pacing back and forth outside the doorway, mouthing about how he hates that I'm doing this while I am having blood drained from me. And now it's 2:39 AM and I'm sharing all the gory details with you. (He's going to kill me for this blog BTW, if I'm not on Facebook tomorrow, call the authorities.)

I'm just angry and I'm blogging angry. Which probably isn't fair, but neither was telling the secretaries about what is going on with my cervix. The man didn't tell his coworkers I was pregnant until two weeks before I delivered, but this needed to be shared.

Ugh, so here is my first passive aggressive post. I'll probably regret it when it's not 3AM anymore, but I hope you got a good laugh.

Oh and one more thing, I have a lot of trouble saying IUD. Why? Because at work we had these things called UIDs which were important and we dealt with them 100 times a day. So when I pause to say IUD so that I say it correctly, the nurses look at me like I'm Forrest Gump. I swear they are thinking "Are you having trouble spelling that honey?"

Ok I'm going to publish this before I am in my right mind so you can enjoy it until John makes me take it down! ;)

I have some scans coming up next month, I'll fill y'all in. Until then, hope you had a better Valentine's Day than I did. Love you!!!

I'm fine, I'm just dying is all

Tomorrow (1/20) is the first anniversary of my diagnosis, as my Mother in Law said today "a date none of us will ever forget". So I guess this is New Cancer Eve or something. So I've had this blog that I've been sitting on for weeks, it's one of those that I don't feel 100% comfortable with. But here goes:

I can't explain how I feel right now. Which is funny cause I'm going to blog about it so I guess I can, or at least I'm going to attempt it. This is going to be one of those "doesn't make any sense" blogs, where I'm just going to write what's been in my messed up mind and leave everyone who reads this to scratch their pretty little heads.

It's been strange talking about myself and how I'm doing lately. Not because it makes me uncomfortable, cause it doesn't (have you read the blog? I'll tell ya every time I poop if you'd like, I have very few boundaries). But there's an assumed optimism that some people have when they talk to me that I don't quite share.

Not with my immediate family, they know the deal. It's unspoken, but we all know the odds. No point in talking about them or bringing them up, it's just depressing and I still don't really feel "sick" per say, so why bother. And my friends get it, probably anyone who has read this blog gets it.

But when I talk to some people, I can almost sense they are waiting for the tumors to go away. I mean you expect that from someone you've just met or someone who is simply an acquaintance. But there are some people who just don't seem to "get it" And I know they are thinking this way because that's kinda how I felt when I would talk to people I knew who were diagnosed before my own journey. I never realized how irritating that must have been.

And they don't mean anything by it, they just want the person they care about to get better. And I'm not talking about when people tell you they are praying for you or telling you to keep up the positivity, that's cool. It's that sense that one day this will all be over. And as much as I hope that will be the case, I'm not stupid, I know my chances of that happening are in the single digits. And I think my problem is I can't tell if these people don't want to acknowledge that fact for fear of being negative or do they really not know?

I guess I can understand, but for some reason lately it's sorta stuck in my brain. And I actually wonder if it's because I feel so "not sick". Like it's almost as though I have to keep putting it into perspective for myself. And the reason I keep saying "not sick" versus feeling "good" is because I still have bad side effect days, but that's all treatment related. I haven't had any cancer symptoms since the cough stopped. And I don't really have any feeling of the blood clot, most of the time I forget it's there.

I wonder however if this need for people to understand the gravity of this is a genuine need of mine or am I just feeling sorry for myself? I find I've had a shorter fuse about things lately. Like when someone has something they need to deal with and just won't go to the doc out of laziness, all I think about are the cat scans where I have to drink the red goo and I'll get all pissy. Like I want to shake them and be like, "really? I wish I just had to go for just a checkup, but no I have to monitor my tumors, but I can see how going to the doc to get a simple blood test would be so stressful for you!" Which is ironic considering ignoring an issue I needed to go to the doctor for is what got me in this predicament in the first place.

I'm hoping this is just a phase cause I'm finding it a bit intolerable, as in I want to smack myself ala Cher in Moonstruck and yell "snap out of it!" I don't like feeling sorry for myself (that's not entirely true, I used to be ace at it, but since then I have been "given" a real reason to and I suddenly don't want to anymore). I enjoy joking about it all, and I love it when people laugh instead of looking at me with that awkward "Did she just make a cancer/fat bald chick joke?" look, where they are too terrified to laugh.

And I hate when people who have beaten their cancer don't have a sense of humor. I mean come on! You beat the beast!!!! Fuck, I'll declare myself Empress of Manhattan if I beat this shit! I mean laugh baby, laugh a big fat belly "I conquered the fuck out of you" laugh. Like Zeus going all lightening bolt throwing and shit.

Does that make any sense? I want people to acknowledge that I'll likely be dead in less than a decade and to laugh about it? WTF is wrong with me?

I say let's just blame the steroid withdrawal and revisit my state of mind in 2012. Sound good?