Sunday, September 25, 2011

OMG! I think I shaved my head for no reason!!

I mean honestly, why wouldn't this happen to me?

I feel like I have been away from the blogging world for so long.  I wish I could say that I was on a relaxing tropical vacation, but I was just busy reading other blogs, like 'Kanye with White People' and oh yeah, having cancer.

Since I last blogged, I think the bad days have outweighed the good days.  But nothing has outnumbered the 'Law and Order SVU' episodes. 

Bottom line is, I am totally over having cancer. I say that all the time, but I really am totally over it!!  I never cry about having cancer, but now, I cry all the time! My roommate asks, 'How are you doing this morning?' My response; like a blubbering idiot, 'I don't know how I am doing.'  My doctor asks, 'How are you?' My response; like a blubbering idiot...well, no response, I'm crying too hard to talk.  Right now, I am watching TV and just saw a commercial with children swinging on those old school wooden swings.  My response; I am now crying like a blubbering idiot. This is just getting ridiculous.

I went for a second opinion to see if I could climb my way out of this cancerous shithole I've been stuck in.  Minus the actual appointment, it was a day from hell.  A nurse gave me the brilliant idea of taking an anti-nausea pill before I take any pain killers.  It worked.  Once.  And it didn't work the day I had the second opinion appointment.   My reaction to pain killers is almost exactly the same as having a really bad hangover.  But greasy food or Wawa won't cure this hangover.  So here I am driving into the city with my parents, in the pouring rain, not showered, already threw up twice, glasses on, did I put on deoderant?, I don't even know, to see a brilliant doctor who will, without a doubt, cure me.  Well, one look at me and she might turn me away! 

The second opinion doctor I am seeing is, Marisa Acocella Marchetto's doctor, this girl right here: http://marisamarchetto.com/

This is so exciting! She is a brilliant cancer survivor AND was a student of my father's.  How cool is that?!? So this doctor must be gold.

And she is.  She was surprised at how bad I looked from the morphine but thought I looked great based on the conversation she had with my kickass doctor.  Well, thank you! Should I ask her out on a date??

So my parents and I immediately loved her.  I felt very comfortable with her.  She was a tell it like it is, take crap from no one, sarcastic kind of woman.  My kind of girl.  So she went through my history and my whole rap sheet of treatments.  I have a rap sheet?  It's not a true rap sheet (record of arrest and prosecution) but it felt like it and was impressive. Not in a good way.  It will make you cry if you hear someone read it. I did. Naturally.

So the appointment was great.  She wrote down the 16 things we discussed.  16. We covered a lot. So I will take these 16 things to my doctor and decide what to do next.

Oh and yes, I am pretty sure I shaved my head for no reason.  Abraxane causes the most hair loss but was not successful this time because it increased my tumor markers, circulating tumor cells and I have severe pain.  I only had one cycle of it.  So I guess I will never know. But I did shave it for the first time myself and I was damn good at it.

Friday, August 26, 2011

Ghetto vs. V.I.P



I received my first blood transfusion.  My hope was that it would be like an episode of 'True Blood, ' some nudity, violence, adult language and some blood sucking/drinking. It was just short of that.

What is the first thought you have when you hear 'blood transfusion'? Mine is: "Holy shit, I do NOT want some random person's blood in my body!!" My guess is, if I ever need an organ transplant, I will have the same reaction.  Needless to say, I am completely skeeved out by getting blood. Completely.  I was so nervous, my palms were sweaty and the thought of seeing the bags of blood and watching it travel all the way to my port was nauseating. And just because I had this fear, the IV tubes were unnecessarily and exceptionally long.

I had to go to a different 'treatment' room for the transfusion.  I was told to be there at 9:30 and the transfusion would take about 5 hours, probably less.   Well, I arrived early (never happens) and out of breath (low hemoglobin (8.5), hence the blood transfusion).  I did not go in to the transfusion room until about 10:15.  That was not in my plan.  The longest I have ever had to sit in a treatment room for chemo was 4 hours too long.  Now they have already wasted 45 minutes of my life.

This treatment room had individual pods for each person with openings similar to windows in between so you could sneak peeks at your next door neighbor.  I didn't get that warm, fuzzy feeling when I walked in like I do when I get chemo in the other treatment room.  My sister came with me for the first half of the transfusion and my mother came for the second half.  So naturally, my sister and I were up to no good.  We couldn't figure out if this room was the ghetto or V.I.P room of the two treatment rooms. 

Blood Transfusion treatment room
1.  The recliners and your 'plus one' chairs were not comfortable.
2.  You must leave the headphones plugged into the T.Vs ( I got in trouble for unplugging them.)
3.  The nurses wear masks, and make you wear masks when they access your port or veins.
4.  The nurse alcohol swabs your port for what seems like 5 minutes.
5.  As mentioned before, the IV tubes are unnecessarily and exceptionally long. 
6.  The indicator for when the bags are empty is a piercing, obnoxious door bell sound.
7.  And no one appreciated our laughter! In fact, I think they wanted to kick us out.
BUT........
8.  I got a secret cupcake from one of the nurses.
9.  They serve you lunch! Hello!
10.  I got a neck massage.....sweet!
11.  The pillows are fluffier and they had enough for everyone.

Chemo treatment room
1.  The nurses think my sister and I are hilarious.
2.  The seating is more comfortable.
3.  They just got a new coffee machine!
4.  When the nurses access your port or veins, they get in and they get out.
5.  The empty bag indicator sound is way more tolerable.
6.  The nurses are happy, funny and pleasant to be around.
7.  I can watch T.V. without the headphones.
8. The IV tubes are half the length of the other ones.
BUT........
9.  I do not get fed, no secret cupcakes, the pillows have no fluff and no neck massages.

The jury is still out, I can't decide which room is the ghetto and which room is V.I.P.

So I did not start the transfusion until 12:00. Be there at 9:30?? Ok. 
Turns out they had to take my blood again to confirm my type, which took forever, and then it takes a while for the actual blood unit to be delivered....in a paper lunch bag!?!
Getting the blood was just as gross as I thought it would be and it is really hard to not look at it.
I was there for 7 hours.  I am still trying to figure out if it was worth it, because frankly I don't feel all that different.

The nurse asked me if I have a living will. She has to ask all patients according to the law. Never heard that one before. Is she the ONLY nurse that has to ask this question by law?  I should have a living will that tells the hospital to NEVER waste 7 straight hours of my life again!!!!

Friday, August 19, 2011

It ain't a party unless it's a head shavin' party!

If God had anything to do with my current situation, at least I was given a borderline perfectly shaped head.

You think this is too thick to Bic?


Fear not, the Bic Master has arrived.  Look at that intensity!

Holla!!!!!!  All the boys keep jockin, and chase me after school.....
 Almost done..........



Bald (squared). Don't be jealous.





Tuesday, August 16, 2011

I would rather be bald.

Well, not necessarily.  I say this now, but I don't think I really mean it.  Chemo #4 (Ixempra) may be working but it has a funny way of showing it.  I keep thinking that I would rather go back on the chemo that causes TOTAL hair loss instead of feeling these shitty-ass side effects. Not sure if I am prepared for that.

People say, "Oh, hair grows back." Yes, this is true. But the question is, why do people say that?  Is it because they feel bad? They don't know what else to say? Is it a super uncomfortable conversation to have? Check, check and check.

But the process of losing your hair is something you will NEVER be prepared for, even if it happens more than once. You still look at your pillowcase in shock when you see all your hair littering it.  You are still disgusted when you wake up with a mouth full of hair.  And no one will ever understand what it is like, unless it happens to them. Here's a clip from my latest shower: Hair stuck all over your hands because there is so much of it, clumps of hair piled up on the drain so the water won't go down, and  hair stuck all over your body, in crevices you don't want it to be stuck, which is so beyond skeevy, if you have any sort of sensory issues like me. Ew.

I wasn't expecting my hair to start falling out again, I thought it did that a few weeks ago. So my latest bout of hair loss just about wraps up my last 3 days.  You know, when people say, 'I just want to crawl in a hole and never come out.'? Well, I say that a lot. I never realized that you have to be specific about what kind of hole you want to crawl in, the comfort level of this hole, how you want to feel while in the hole, how long you want to be in the hole, etc.

I've been in a 'hole' (my bed) for the past four days. In that hole I took some severe pain in my hip and ribs, a fever, a headache, dizziness, nausea, vomiting, constipation, diarrhea, my cat wandered in every now and then, and of course hair loss. 

I crawled into my hole around 9:00 PM on Thursday night with a full stomach, my first dose of Tylenol codeine for some pain and a doctor's appointment scheduled for tomorrow (Friday).   I was startled at about 4:11 AM by the fact that my body was ON FIRE, and I was curled up in such a tight little ball, it hurt.  Mommy to the rescue!  My temp reads 101.4, what the fuck!?  Ok, don't panic. Do I call the doctor's office? The chemo nurses always tell me specifically to call if my temperature is above 100.5 after treatment. But it's been 2 weeks since my last treatment.  I'll call anyway and the nurse will tell the on-call doctor and he will tell me to go to the ER or wait until my appointment later.  Totally logical thought process, no?  I call.....listen to some really bad muzak, what could the nurse possibly be doing at 4 in the morning?!?  Oh, she picks up! I tell her that I have a high temp and my last chemo was 2 weeks ago, blah shit blah, as calmly as possible, and she goes, "Is this an emergency?" Pause.

  *Now, I want you to say this out loud in the most snottiest attitude you can muster up. Got it? Ok. Because she said it, even snottier than that.*

Are you fucking serious??? That is why I'm calling!!!!!!! YOU are supposed to tell ME if this is an emergency!  This of course, I did not say. I squeaked, "I guess not, nevermind." And then hung up and started to cry. Now I know what took her so long to answer, she's probably fielding phone calls from dumbass cancer patients like me!

Ok, so we'll wait until my appointment at 11. No problem. I chow down a granola bar (because you never take ANY medication without food, if you are me) and another dose of tylenol codeine. Pass out, with mom in bed of course.  When I wake up, I still have a fever and I feel even worse. I know, not possible, right?  Now, I know you are all wondering, I can hear the whispers, 'Did she throw up?'  Well, yes. Yes, I did. I decided to skip the third dose and go for some regular tylenol instead for the fever. I literally threw up as soon as I swallowed the tylenol. At least I'm consistent.

I honestly don't know how I got to the hospital. I don't remember putting clothes on, I mean I could barely open my eyes, and when I did, it may have been for a few seconds at a time.  I felt super nauseous, so my mom packed her double lined reused plastic bags in her purse and I had the glass of ginger ale in hand. 

Now, because I feel like death, it's only natural that next few things happen.  I walk/crawl into the waiting room and the nurse at the window says, "Carla, don't look so happy to be here. (giggle, giggle)" That is not funny. I can't even fucking open my eyes to see which one you are!

As soon as I am about to assume the fetal position in a waiting room chair, they call my name to get my vitals. Fastest they have ever been, EXCEPT, it is the nurse I am so grateful for never getting because she just. seems. so. dumb.
I step up on the scale, which becomes part of the 'vitals ritual' so quickly. It looks similar to this.
Ok, minus the polygamist style dress, 80s-esque glasses, and the smiles.   If you are a woman, I don't care what you say, but you ALWAYS pay attention to the scale. Oh honey! That was the sloppiest weigh in ever! You definitely just put on about 5 imaginary pounds, what is wrong with you?! Just because I am sick, does NOT mean that you can be sloppy at the scale!

I see the doctor, she's perplexed, it must be an infection, so she wants to take lots of blood and cultures.  First order of business, pee in a cup.  Sure, sure, I've peed in a cup before. Whoever designed the cups you pee in should be shot. Several times.  How impractically small these cups are! There is no one on this planet that can pee in one of those, without making a mess of pee. It is IMPOSSIBLE.  And now is definitely the time I want to sit in the bathroom and peel open the little alcohol moist towelette to clean the mess of pee. Everywhere.
Next, back to the treatment room for bloodwork, anti-nausea medicine (thank you!) and some tylenol. STOP. You are using my port. I didn't put on my numbing cream. Oh, sweet jesus! Really?!?
The second person who should be shot, several times, is the person who invented the freeze spray numbing shit in a can.  IT DOES NOT WORK.
While I am getting blood taken, I eat a granola bar, because then I won't be nauseous, right? Um, oops now I am more nauseous.  Oh good thing my mom has her double lined reused plastic bags with her! She whips them out of her purse, here! Put the fucking bags away, mom! Are you serious? We are in a hospital.....they have that shit here, you know, for the cancer patients!  (We walked away with a few hospital grade vomit bags for free).

So I am sent home less nauseous, some tylenol working on my fever and a prescription for methadone.
Yup, methadone. Call A&E, we've got an 'Intervention' episode on our hands again!  Have I mentioned before that I would be the worst drug addict ever?
Methadone = less pain, major dizziness and lots of vomiting.

I finally crawled out of my 'hole' to see the light of day, today (Tuesday).  Just to go to the hospital for another round of chemo, which to my relief was changed to Abraxane.  Which I equate to 'the one that got away.'  So happy I won her back, she was so good to me two years ago.

Yes, I would rather be bald. And I will be soon enough.


Disclaimer: It took me about 6 days to write this blog.

Saturday, July 30, 2011

You looooook like you should, sleep.....

....is a nice way of saying it looks like someone punched you in both eyes at the same time. Naturally, I hadn't noticed. Oh wait, I did.

I just started a new chemo. Who's tired of hearing that line? I am. It's like a bad pickup line at this point. I am currently undergoing treatment number four since February.  Ouch.  The first two gave me awful side effects, this last one, Halaven, was legit not working.  All bloodwork went up.  So we had to bag that chemo.  (haha no pun intended, hahaha, you know chemo comes in a bag.....ok, not funny)

I just started Ixempra. I was off treatment for a few weeks and man, was my body craving some toxins!!
I have already lost a ton of hair and this one might take more, so I could be bald again soon, but I may be pleasantly surprised. If I do lose my hair, I would prefer that it wait until my brother in law gets back from his trip, he's my go-to Bic guy!

So on Toxin Tuesday, I was there for almost 5 hours.  My pre-meds take a while and then the Ixempra IV drip is 3 hours.  This is the longest I have had to spend in the treatment room.  Worst ever.  The first pre-med I am hit with is Benadryl.  So I was super drowsy and useless for a while, which helps pass the time I suppose.

So post treatment, I feel OK, I survived work on Wednesday and then it goes downhill.  I had to get a Neulasta shot (which helps boost your blood cell making via your bone marrow) but can cause bone/joint pain, etc. Thursday morning I take a shower and it was painful to wash my body. My body was so tender to the touch it hurt to wash it.   On top of that my bones start throbbing with pain.  It feels like little hobbits are taking swinging practice on my whole body over and over again.  Not that I know what it feels like to be punched or swung at, but I am assuming it sucks.  Especially by a hobbit, I mean they appear be solid little creatures.  The pain just gets worse, so Friday, the doctor calls in a prescription for percocet and prednisone.

Now, I am totally off my narcotics game here people.  I can't remember the last time I took a pain killer.  Well, it doesn't take much to guess what happened next.  Yes, you guessed it! It only took 2 hours for me to start throwing up!
Sleeping has not even been an option, it's more like trying to imagine you are in your little happy place and then realizing every 20 minutes that your happy place is actually hell.

My mom slept with me last night.  This might be the only reason why it is still ok for me to live with my parents. At 2:00 am, they are out of bed like lightening making toast for me, whether I am seven years old or 30, yes I actually made it to 30.