I HATE Neulasta!

This week has been really rough.  As I wrote before, I had two really bad days after the Neulasta shot.  Then, I had two ok days.  That’s the last of the ok days I’ve had since.

I woke up with my back & thighs killing me.  I could barely get out of bed or walk.  This has gone on pretty continuously, & occasionally, a new bone would add its two cents to the mix.  In the middle of all this, I had to go to get another dose of venofer & see Dr. Morrissey.  As Roseanne Rosannadanna would have said, “I thought I was gonna die”.

Thankfully, I was able to go to the appointments & smile.  My Aubrie was with me, & I don’t like my kids to see me in pain.  Yes, I know that they know, but I figure if I can pretend as much as humanly possible, they won’t realize how bad it is.

Sidebar:  Dr. Morrissey took my last drain tube out.  I didn’t realize how long I’ve been living with one until I looked at the calendar.  Since surgery on November 23^rd, I’ve had a drain tube in.  Wait, it was out for about 6 days, but that was when I had that God awful infection.  So, even though it was out for that brief period of time, I wasn’t conscious enough to appreciate it.  So, there’s always a bright side somewhere.

Ooh, wait, though, Dr. Morrissey actually said, “keep an eye on things.  If stuff even begins to swell, call me.”  Now, you gotta give the man a pass here & there ‘cause he’s cute, but I had to really, really, really bite my tongue.  Inside my head was screaming, “Ya think????”  Now that I think about it, I can’t say for certain that the comment actually stayed inside my head.  There’s a good chance that I actually said it out loud.  Huh – how about that?  Oh, well.  I don’t have to see him again for two weeks now, which is good.  I’m getting really tired of running from one doctor appointment to the next.

ANYWAYS, this week has sucked big time.  Thankfully, a cancer survivor, Maureen, took pity on me & is corresponding with me.  She told me to get as many heating pads as humanly possible.  Of course, I’ve done that.  I kind of look like the Michelin Tire Man walking around, with a big ol’ heating pad strapped to my back & another one on my thighs.  Or another visual could be the Pillsbury Dough Boy from “Ghost Busters”.  Either which way, I’m surrounded by heating pads, homeopathic heat wraps (which stink to high Heaven), & anything else I can grab that gives off heat.  Even poor Bubba (our large black lab) has been part of my little freak show of heating elements.  But I don’t care how I look.  Well, not right now, that is.  I’m sure soon enough, I’ll go back to Fernando’s mantra, “It’s always better to look good than it is to feel good darling”.  Frankly, I can’t wait until I feel good.

Oh, well, on the bright side, Dr. Seisholtz says that the bone pain means that the Neulasta is doing its job.  If you asked ME, a little TOO well - ugh!

Round Two of Chemo starts this Tuesday.  Of course, followed up by another Neulasta shot Wednesday.  Shoot me now, shoot me now!

Lucy vs. Chemo - Round One

Why do I feel like there should be the Rocky theme song playing as you read this?  Oh, I know.  Because that would be dumb & look how well it turned out the last time I put music on the blog!

Matt took me to Dr. Seisholtz’ on Tuesday for my first round of chemo.  It took over an hour to see him (see, Doctor, I TOLD you I was telling).  We finally did, & he was his usual charming self, which almost made up for being so late – almost.  Of course, I was nervous, but again, those nurses!  I swear, you must have to take some type of oath that says you’re a very kind & caring individual to work with cancer patients.  I haven’t run into one yet that’s made me want to slap her.  Just saying.

They finally hooked me up by my port, & man, was that uncomfortable.  The needle seemed to go in further than for the venofer (iron infusions) treatments that I’d undergone.  I was squirming like a fish on a hook.  Apparently, enough that Dr. Seisholtz noticed, & ordered something called, “Ativan” to be put into the IV.

Now, here’s the funny part.  Remember I’d said earlier in this that I’ve had more surgeries than your average 10 folks put together?  I’ve always let current doctors know that, & that due to that fact, I have a very high tolerance for pain meds & such.  Dr. Quiros (hi, Doctor!) told me that during my mastectomy, the anesthesiologist had a hard time keeping me asleep.  So, I know what I’m talking about here folks.

The nurse told me that this medicine was going to make me very sleepy & I should just relax & take a nap, which made me giggle.  I let her in on the big secret – if it can fell an elephant, than, yes, I’ll be looking at the insides of my eyelids.  Of course, she was thinking I was joking . . . . .   so, for the next 3 hours, I sat knitting, answering emails, & listening to music.  The drug did manage to relax me, but sleep?  My body taunted the drug, then came back around & taunted it for a second time.  Silly drug – my body mocks you & the IV line you rode in on.

I should backtrack at this point, however.  Before chemo was administered, they drew blood, to check my blood cell counts & my hemoglobin (Hgb) levels (they can actually do this there at the office – freaky scary technology).  Remember, the normal Hgb count for a woman is 13.5 to 14.5 g/dl.  I was at a whopping 6, which was why I had the two venofer infusions.  They “spun my blood” & were astonished to see that I’d only advanced to 7 g/dl.  I’m telling you, I’m part Borg!  The Borg side wants nothing to do with human blood cells.

They decided to add another does of venofer during chemo, which added 45 minutes to the therapy session.  But, it wasn’t bad, since I had things to keep me occupied – mainly my music.  Dakota has “lent” me his ear buds, so I can blast my music without setting off any decibel monitors.  I put the word lent in quotation marks since he hasn’t gotten them back just yet.  I guess I need to replace them, since I LOVE them!  My ears are usually ringing when I’m done, but, I was a rock singer for years.  If I didn’t damage them during those years of traipsing around with a band, I think I’m good.  Here's proof of my misspent youth:

Or, it could be the whole Borg thing again – don’t know, don’t care.

Side bar:  Speaking of ear buds & how loud I blast my music . . . . .  You know what?  I’ll put that at the end of this. 

Finally, the infusion fest was over & it was time to go home.  I know this is going to sound silly, but do you know what it feels like to be a science experiment or a dough ball trying to rise?  I do.  My entire family watched me like a hawk the rest of the day & pretty much, since.  If I sneeze, two to three people come running.  “Mommy, are you ok?”   “Yes, baby, mommy’s fine”.  And if I cough?  Holy Cow!  You’d think I was wheezing for my last breath.  Coughing had the tendency to bring any & all family members within a 5 mile radius, faster than the speed of light.  Throw in Michele, & you’ve got a full house.  Family, sometimes a cough is just a cough.

The day following chemo, patients are now given a shot which is used to counteract the awful side affects from chemo.  It’s called Neulasta, & it raises your white blood cell count.  This should protect you against infections, & keep you as safe as possible from the poison they just pumped into you.  However, it makes your body work extra hard to produce said blood cells.  This makes you sick; very, very sick.

Dr. Seisholtz warned that it would be rough & that I’d feel as if I had the worst flu in the world.  My joints would be sore, I’d feel like a truck hit me, & even my hair follicles would ache.  Of course, I’m invincible, & I’d willed myself to not have even one of those symptoms.  Plus, the chemo didn’t bother me, so I seriously doubted that it would bother me even a little bit.  . . . . . I remembered my arrogance the following day as I lay in bed, moaning.

Now, folks, I’m an upbeat person; or at least, I try to be.  But I can also be a huge, whimpering baby when I’m not feeling well.  I whined like a toddler whose pacifier had been taken away from them – seriously.  Honestly, you’d have thought that I was on a rack being tortured somewhere.  That shot made me feel like the flu was a sissy’s virus & I pride myself on not being a sissy.

So, Thursday & Friday were spent in bed, wishing there was a happy little Neulasta fairy somewhere, poised to sprinkle feel better fairy dust over me.  Sadly, there is no such fairy.  That’s probably better, though.  Seeing how lousy I felt, if some pretty little sprite had come into the room, waving a teeny little wand, making pretty little noises with her teeny little bells & grinning from her teeny little ear to her other teeny little ear, I probably would have shot her.

Today, I’m feeling better.  Not 100% percent, but better.  I’m hoping that my mood will be on an even keel, & that set backs will be few & far between.  At least I hope I can keep my murderous urges to shoot innocent imaginary pixies at bay.  Wish me luck.

Speaking of listening to my music a bit too loud. . . . .

I was trying to be considerate of others in the chemo ward.  So, I asked Matt if people could hear; while I had the music blaring in my ears.  I discerned that he said no, but apparently, the whole room & the hospital down the road heard my query.  Thinking he was being obnoxious, I called him a name.  Not his name, a bad name.  Well, not the worst name I could use, but, still.  OK, OK, I called him a “dick”.  He promptly pulled one of the ear buds out, & whispered, “Everyone heard that, too”.

Kids, learn a lesson from your Aunt Lucy.  Never say bad words.  Never say bad words when you have music blaring in your ears.  Never say bad words when others are around.  And ESPECIALLY never say bad words in a room full of elderly folks, who are already quite annoyed at having to deal with chemo (& as such, are exceptionally ill tempered), who’ve been giving the stink eye since before your mother was born, perfected it to an art form, & thus have the ability to make you feel as if you just stood up & as loud as humanly possible, called upon Satan in middle of St. Peter’s Basilica while the Pope was saying High Mass.   OK?  Lesson learned.

How to turn the sound down

I turned the music off completely. Figured that it can give folks a headache!

Tomorrow, Matt & I will head up for what is more than likely my first round of chemo. I say more than likely because Matt has some questions for Dr. Seisholtz. He wants to be sure that there's no way I can qualify for the experimental drug. I don't think so, but, we want to be sure. Whatever is out there that can increase my chances of long term survival, we want to know about. And, if it's just a matter of waiting another week, then so be it.

This weekend, I'll be shaving my head. They say that most folks don't usually begin to lose their hair for about a week or two after the first treatment. But, might as well get used to it! Plus, I'm a little excited about wearing wigs. It takes forever to do my hair right now. AND, imagine how much time I'm going to save in the shower!

OK, I'll let you know how tomorrow goes. Wish me luck!

Breast Cancer - I know my enemy

How Many Kells Girls Does It Take to Put Gas in a Jeep?

You’ll find the answer to this question at the end of this update.  I figure that some of you (family & friends) are reading this to find out what’s going on with my illness.  Others are reading this to laugh their collective hineys off.  And then, there’re those of you who’re reading this for both reasons.  As with many of my exploits, this one involves my daughter, Elyse – the Ethel to my Lucy.

Wednesday wasn’t as bad as I’d envisioned.  I went to the oncologist to get the infusion, & or course, used my chemo port for the first time.  I was SO nervous!  Fortunately for me, I had the BEST nurse, Nancy.  She talked to me & then she told me that she was going to “hook me up”.  Like Dr. Morrissey, she had me take deep breaths, & then when I exhaled, she stuck me.  But it didn’t hurt!  It felt weird, though, but I just can’t explain it.  You can clearly see the outlines of the port, as it protrudes about an inch from under my skin.  It’s an odd feeling to walk around with that thing, & even weirder to be hooked up to an IV with it. 

The next day, Thursday, I went again.  This time, Elyse took me & I wasn’t so nervous since I knew what to expect.  She stayed with me & we had a nice time.  We talked, I was knitting her a new funky scarf, & she was trying to take a math final.  While there, Elyse took these pictures:

And now here’s a BIG bummer!  The experimental drug that I’d signed up to take doesn’t want me – sob.  Apparently, the infection that tore through me (& ended up with me having to have an additional surgery) knocked me out of the running.  Pat went to the head muckey mucks not once, but twice; to no avail.  She left it to me to wait another week or so, while the appeal was being taken to another level.  She didn’t recommend it, though, & I knew for a fact that Matt would have a MAJOR fit if we held off on chemo for yet another week.  I’d feel better getting this show on the road as well.  The cancer is very aggressive, so I want to be kicking its butt with the chemo ASAP.

You want to know a really weird thing?  These infusions are supposed to boost my red blood cell count, thus making me less tired.  As usual, though, it’s done the EXACT OPPOSITE!  I’ve slept just about nonstop since Thursday.  In fact, Michele & I had our first conversation that lasted any length of time last night.  This is unusual when you know that the two of us spend at least an hour on the phone at one time & most times twice a day for a total of two hours.  One day, we were on the phone for about 15 minutes, but she had to go.  When Matt walked through the kitchen, noted the time, he pretended to have a heart attack.  Men seem to have this shared trait – they think they’re funny.  Apparently, Michele’s Alex does the same thing. 

This Tuesday, I begin chemo.  I’m nervous about it, but at the same time, I’ve got my Ninja costume that I must don.  Kung Foo Lucy!  Of course, I’ll let you know how I react.  However, since my body never responds in the correct manner, I’ll probably have tons of energy.  I’ll be writing about every little thing that happens to me – you lucky minions, you!

OK, now to my Lucy & Ethel adventure.

HOW MANY KELLS GIRLS?

It was the morning we were to report for my first infusion, & Elyse was driving me in the Jeep.  We knew we needed gas, but we figured we could wait until after my appointment.  However, when on an incline, it looked as if we were going to run out before we even got out of town.  We made the decision to get gas – something we should have known would end in disaster.

You see, even though Kells girls are very self sufficient, we are also spoiled by the Kells men.  I can’t remember the last time I put gas in my car.  Truth be told, I don’t know what half the stuff in my car does (see “I’m Too Stupid for my Car”).  I just figured that since the girls got their licenses, Matt taught them how to pump their own.  Instead, their brother, Dakota, has been doing it for them all this time.  Imagine my surprise when I realized that between the two of us, I was the one with the most gas pumping experience – from 25 years ago before I married Matt.

Elyse pulled into the gas station, and then quickly realized that she had no idea which side of the car the gas tank was on.  Looking out the door, we saw that it was on the driver’s side.  Now, Elyse is very good at driving, however, after trying to figure out which side of the car we needed to pull up to, was a bit distracted.  She narrowly missed hitting the tanks.  Backing up, she managed to get it in place; but it was a very, very tight fit.

She got out, & I handed her the gas card.  I was sitting in the warmth of the Jeep, when I noticed that she was standing there staring at the pump with my card in her hand.   I knew help was necessary – MY help, though, not so much.  I’m the mom, darn it, so it was up to me.  Together we stood there & read the instructions on using the credit card.  She finally ventured putting it in, & we were happy to see that instructions began to scroll across the screen.  Elyse got the nozzle out, & we turned to open the little gas door.  She pulled, nothing happened.  I pulled, nothing happened.  Back & forth, dumb & dumber stood there pulling at the little door.  THEN, Elyse remembered – there’s a lever in the car that we needed to push that would automatically open the stubborn tank door.  She made quick work of unscrewing the doohickey, & put the nozzle in.  Sadly, no gas was coming out.  She squeezed, I squeezed, she squeezed again, & so did I.  I looked at her & asked if we didn’t just do this dance.  We stood there with our mouths agape, staring at the nozzle.

Finally, a Good Samaritan, who’d apparently been quite amused watching this little display, came over.  Here, we’d forgotten to turn the little lever thing down on the gas pump.  He smiled, showed us what we were doing wrong, and then thought better of it.  He pumped it for us, showed us how to get the card out of the machine & sent us on our way.  We couldn’t help but notice as we looked in the rear view mirrors that both he & several other patrons at the gas station were laughing their butts off.

We didn’t care, though!  We had gas in the Jeep, & we were on our way.  Late; but on our way.  And if we ever need to put gas in the Jeep again, we know just what to do.  Ask for help & forget about trying to do it ourselves.  Saves time.

Hey, we may be dumb, but we learn fast.

I need more iron!

I went to the oncologist Friday for two reasons.  First, to meet with Pat Parsons to discuss the new drug that they’d like to add to the arsenal o’ poison that will make up my chemo cocktail.  Pat was very, very thorough as she explained all the pros & cons of participating in this trial.  All in all, the pros outweighed the cons.  This drug is already given (with good results) under different circumstances.  Basically, it blocks the blood supply to tumors growing in different areas of my body, thus cutting off their life line & killing them.  We have no evidence that my cancer has metastasized, but this will be a bit of insurance that if it has, it gets stopped in its tracks.  Kind of like Raid – kills cancer dead.

The other reason I went was to get an iron infusion to help get my hemoglobin counts up prior to chemo.  Nothing like being a few quarts low.  But, & here’s where my previous post is going to make you smile, my stupid insurance wasn’t going to cover it!  Apparently, they wanted me to have the infusion at the hospital, 300 yards down the road.  Yup, it was a matter of geography.  So, the insurance ladies at the oncologist’s office are arguing with them.  However, I still stand by my claim that I’d rather have my own private insurance company in lieu of a government run program! 

Now, here’s the funny thing.  I’ve been operated on 3 times in one month & have had my blood drawn & tested at least 10 times in the same time period.  Why is it a mystery to the doctors that I have a low blood cell count?  I’d have more blood in me if I was Dracula’s human mistress!

I’m beginning to think that if one other person sticks a blood pressure cuff on me, puts a thermometer in my ear, looks in my mouth, pokes around my neck, attaches probes to all my appendages, digs into my tummy, inspects my boob, looks under my now hairy armpit, has me pee in a cup,  makes me take off the “hider” bandage over my incision to inspect my lovely scar, weighs me (which now is just a complete insult since I won’t be losing weight during chemo), inserts an IV, has me fill out a 3-5 page form, drink gallons of thick, disgusting liquid, asks me to stand in front of some sort of imaging machine or lie down while I’m being inserted into some sort of nuclear tunnel (while they run behind a protective barrier), or DRAWS MORE BLOOD, I’m going to turn into a raging lunatic.  Well, more of a raging lunatic than is normal for me.  The funny thing is, I actually get told, “be sure to get some rest”.   Aaaaagggghhhh!

But, on the bright side, this will be over in about a year.  Hopefully, I'll have nice big hooters to show for all of this.  And maybe I'll find that like Dolly Parton, I like wigs.  It takes a lot of money to look this cheap!

Up next, we got the ok for the iron infusion; I’ll go tomorrow after I see Dr. Morrissey.  I’ll keep you posted!

Sorry, folks, just had to!

In my oncologist's office, there was a notice to cancer patients, like myself.  It basically warned us that if Obamacare passes, the quality of our care will be GREATLY reduced.  Since this isn't a political blog, I won't go on.  However, if you're interested, Ray Stevens just put this video out.  If you agree, pass it on; preferably to your Congressman!


We the People - by Ray Stevens

www.raystevens.com


My insurance may be a pain in the rear, but I'd rather have them than a plan run by the government who've managed to run Medicare, Social Security, the Post Office, etc. into bankruptcy.  OK, I'm done.  Sorry for the political rant!