Sunday, June 16, 2013

Sucky News Week

So the last year has been crazy annoying.  Starting in October I got what looked like a cold but lasted thru New Years.  And then came on and off for months.  It was a fever with productive cough and no one could figure out what it was and why it didn't go away.  On top of that my body decided it wasn't going to hold down any foods or liquids and my weight loss went from gradual to DAMN GIRL!

Thru that I was able to get my lung tube out because I wasn't draining very much.  Well the process of removal is pretty barbaric, they literally just pull the damn thing out and it hurts like hell.  The process only lasts a few seconds, but John said watching my body twitch and jerk was like watching a movie for a second.  But you know, it's one of those things, you just put your big girl panties on and suck it up.

Well things didn't really get much better.  I constantly made trips to urgent care and 2 or 3 nights in the hospital, always looking for sources of fever, vomiting, coughing, exhaustion.  No one had any answers.  During all of this, about 8 weeks ago Dr. Krug, my primary oncologist, felt that my kidney function numbers were a little too high.  The number is called Creatinine (I think) and the other number they look at is called BUN.  That last number was ok, it's the first one that was too high.  Not so high that anyone would use the word dialysis, but high enough that you might want to pause any chemo that is filtered through the kidneys.

So we decided on a break from chemo.  Problem was, the break did nothing.  My creatinine number never came down, it actually went up.  The other symptoms that kept sending me to the hospital stayed right on with no real break and on top of all of that it looked like fluid was building up in my left lung again, since I had no tube in there.

On Monday June 10, I had a appointment with Dr. Krug to discuss all of this and he said straight up, I needed to check into the hospital to have the Kidney people look at me, to have the tube put back in and to start a new chemo asap.  Turns out that on top of the kidneys never healing and the left lung filling up with fluid, my tumors in the lung, spine and liver had grown.  So he wanted to give me a new chemo that filters through the liver.  I was fine with this and said let's do it now.  So we headed straight to the hospital and waited hours to get a fricken bed.

So I had a few annoying moments that I just don't have the energy to share right now, but I ultimately got the new tube, which for the record hurts like hell.  They had a tough time putting it in.  Apparently they were dealing with a lot of scar tissue and an old tumor that decided to float around and give them a hard time.  So I am pretty beat up on the left side. 

The kidney people don't think much about my high number, they seem to think everyone is making a big deal out of nothing, which does not make me happy cause I spent 8 weeks having my tumors grow, for nothing.

But here'd the real crap news, I had my routine Brain MRI and I am so spoiled by that one, that I wasn't prepared for the results.  One of my tumors has found new life and is growing and there are an innumerable amount in my brain fluid.  I don't really know how to process this because it all developed so fast.  I had a cat scan done on the brain a little over a month ago and it was fine.  So this really hit out of no where. 

Right now the plan is chemo since radiation can't help me now.  I am in a weird emotional limbo.  I am partially in fighting mode, you know I have been down these tough roads before.  On the other hand this one feels tougher for some reason.  I think it's because I had no warning, had no way to know the brain could change so quickly.  It's going to be a while before I can get used to this.

Oh and the new chemo will cause my hair to fall out again.  Strangely that makes me kind of happy, cause I really hate this crappy brillo pad on my head.

There's the update.

Saturday, September 29, 2012


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.

Tuesday, July 31, 2012

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!

Sunday, July 8, 2012

Things I never thought

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


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

Thursday, June 28, 2012

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. ;)

Wednesday, May 30, 2012

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.

Friday, March 30, 2012

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)