Flunked The Hearing Test

I thought I was just pissy about my hearing.  Jeff would talk to me from the living room, I’d be in the bathroom and couldn’t hear a damn thing he said.  I put it up the fact that the TV was on, the dishwasher was on, the fridge runs like a jet engine and the bathroom fan sounds like a jet engine without the benefit of jet engine oil.  I would stomp out, hairbrush in hand (when I was allowed to use them) and say,

“WHAT????!!!”

I even came up with the rule “you may not talk to me unless we are in the same room.”  This later got amended to “you may not talk to me unless you can see the whites of my eyeballs.”

Turns out it has some credibility.

Chemo Round Three, when I announced there was some ringing in my left ear, I was quickly referred for a hearing test.  I also didn’t get my one chemo treatment that potentially is the cause of the ringing of the ear (I didn’t duck chemo that day; I still got the other three drugs). 

So three days after Chemo Three, with my mug of ginger tea in my right hand and the vomit/garbage can to my left, I sat in the hearing booth with a set of headphones on.  Thirty minutes later, after repeating word after word after word, both with static background and without, I got my results.

My hearing in my left ear sucks.  As is in moderate-to-severe sucks.

The audiologist did some tests about how loud I could stand a noise level before I asked her to stop (not long at all) and would play background static while saying a word.  At least I think she was saying a word.  All I heard was static. 

All while my left ear is quietly buzzing on its own accord.

Where do we go from here?  Three years ago I had a hearing test done because I had water in my Eustachian tube for a really long time that I couldn’t get out.  My primary doctor thought I had cholesteatoma so we went all out trying to figure it out.  I finally got a hold of my hearing tests from three years ago.  Turns out, my hearing was bad back then.  Not as bad; it has gotten worse.  It went from 40 to 70 (the higher the number the worse the hearing) in those three years.

Do we know if it is because of the chemotherapy drug Carboplatin?  Nope. 

Is the ringing from the Carboplatin?  Dunno.  It can also be caused by steroids and anti anxiety meds, both of which are injected every 21 days and in pill form for seven days after each chemo round. 

I didn’t get the Carboplatin on Chemo 3 or 4, and 5 and 6 are up in the air.  We do know the ringing only started when chemo started, but was the hearing loss a result of the chemo?  Or did I already have some of it?  And would more Carboplatin cause more ringing, or more hearing loss?  Or just do its job and kill the cancer?

Choices.  Life altering choices.

But don’t tell me about it.  I probably can’t hear what you’re saying.

On the flip side, whatever I can hear, I promptly forget anyway. 

Aeration With Needles - Acupuncture

You’d think that with all the needles and biopsies and blood draws and chemo pokes and anything sharp, I would want to stay away from all of it.

Well, no.  I intentionally walk myself into a little room with quiet music, lie on the table in my skivvies and subject myself to more.

On purpose.

I had my first acupuncture appointment after my second round of chemo.  It was done in Everett at their cancer center, so it was all designed for us cancer-ladled people.  I still had the face flushing, the wooziness, the incredible anxiety that accompanied my cancer diagnosis, that horrible sweet taste in my mouth.  I told all this to the acupuncturist.  She nodded her head and told me to either pull my leggings up and get down to my short sleeve t-shirt or undress and get into my robe.  For this one, I already knew my leggings would go up over my knees (yes, I practiced) so I went that route.

She came back and started in with the needles, placed strategically.

....Wait, go back a few steps.  First she asked me how I was pooping.  Well then.  No privacy here, eh?  Luckily I had read up on this part of the procedure and knew it was coming.  Also, the whole, “stick out your tongue” business. 

Okay, now I’m on my back and the needles are coming at me.

Again, completely intentionally.

Some of them stung when they went in.  For about three seconds.  Most of them I didn’t even feel. 

Then I was told to lie perfectly still for 15 minutes, alone in the room, call if you need anything.

You stick me full of needles and tell me to stay still?  Wait.  This is OUT OF MY BOX to be still!

Oh, and I have an itch on my nose, can ya get it?

I was good and didn’t move.  She came back in 15 minutes and pulled out the needles.  Again, didn’t feel a thing.  Then she put these little balls in my ear, stuck with tiny band aid and those were to stay in for about 5 days or until they fell out.

I walked out not really feeling any different, but wasn’t expecting some miracle.  As a matter of fact I had this metallic taste in my mouth instead of the sweetness that had plagued me.  At this stage in the chemo I had been having a horrible time with the inside of my nose; dried crustiness, nose bleeds and just really tender.  I figured they took away the sweetness in my taste buds, but gave me the metallic.

Turns out my nose was bleeding and I was swallowing it. 

Neato (and sorry if I just grossed you out, but welcome to my world).

The metallic taste went away before I made it home.

And the sweetness taste has not been back since.  Seriously.  The sweet is gone.  Subsequent visits to the acupuncturist have confirmed something to do with the spleen and I make sure she gets that spot EVERY SINGLE TIME!

So is acupuncture working or is it a placebo?  Don’t know, don’t care.  I sleep better, am less worried, only took three anti nausea pills during the last chemo round, don’t have as much face flushing, and felt fairly good this last round (fairly good despite poison running through my veins to kill the cancer cells).

Chemo Round Four Out the Door

No judging on any content here because I feel like that third bottle of wine just rolled, empty, under the chair.  Somewhere.  By the cat.  Maybe.  She’s sleeping.  So probably by the dog.  The big dog.  Not the little one.

Yeah that.  After three naps in the infusion center and one in the car (yes, Jeff was counting and they were doozie out-like-a-light naps) I came home “just to lay down.”  That was at 3:15.  It’s pushing 6:10 pm, people.  Holy Bat Cave!

Drugs.  Well.  Drugs.  For starters I asked for the Lorazapam to be put on the machine and used with a slow drip.  I think she set it for five minutes.  I’m still feeling it, I tell ya.  Big kisses to that one.

Chemo Drugs.  After a LOT of back and forth, mostly with pushback from me, we did NOT do the   Maybe the hear loss is from the chemo; we don’t know “the patient doesn’t pay that much attention to her hearing loss,” but the tinnitus, yeah that only started after the chemo.  The back-forth on my end came because Lorazapam, steroids and even ibuprofen can cause ringing in the ears, the first two are also a result of the chemo.  After the argument that Carboplatin is sort of a back up chemo, that the Taxotere with the Herceptin and Perjeta are the big dogs, I let Carbo go for this round.  A CT for my head to rule out an ear tumor has been ordered.  So for all of those saying “what is WRONG with you” your answer may be coming.

Carboplatin, the one that we think is causing the hear loss and ringing of the ears.

We did not switch out the Taxotere with the Abraxane.  The rash is manageable and I got the impression Abraxane might not be as powerful.  And if we are taking Carboplatin off the IV stack, we need powerful.

So with all that and my ginormous blood pressure reading, we got that party started.  I only had to stay 20 minutes after with the cold cap and we ended up leaving a little before 3:00.  Awesome sauce. 

Now to stay awake at least until 8:00.  Haven’t had that much of a stay-awake time span since 11:00 this morning!

Off To Chemo Round Four

7:00 is departure time for Round Four.

Asking for prayers that the blood work is good so they actually give me the chemo (always a worry; if I flunk that I get sent home.  Or off to get some blood infusion or something; I never asked; don’t want to find out) and that I handle the chemo as well as I’ve been doing. 

They might change Taxotere to Abraxane which might be good.  Although then I have the anxiety that at least I knew what to expect from the Taxotere.  We also need to determine if we go for the potential hearing loss drug.  I don’t know if that’s why my hearing is going or just because it’s always been bad.  It’s a gamble. 

Get the drug and lose more hearing but kill the cancer cells. 

Don’t get the drug, keep my hearing but don’t kill the cancer cells. 

Leaning more toward risking the hearing but that’s my opinion.

Anywho.  Prayers and happy dances please.

The Spinning Circle

You click on a website, ready to read the latest gossip on one of the Kardashians, and you get the spinning circle of download time.  Waiting.  Waiting.  Waiting.  It’s thinking.  It’ll come to you soon.  Real soon.  One of these days.

Still waiting.

Click, there it is.

That’s my brain on chemo. 

The other day Jeff and I were talking about going to Ace.  He said he needed suet cakes.  I said I needed…  I needed … something.  Those things on the rack outside.  You put them in a brown paper bag to buy them.  You plant them in the garden.

Onion bulbs.

That’s what it was.

Can’t come up with the right word or remember what I was doing or talking about.

All. The. Time. 

At work I know I have to have four things on me when I go out to recess.  I have to stand at the door doing a mental check – out loud.  Radio.  Vest.  Phone.  What’s the fourth one?  Oh, whistle.

On the way to the office I will have two things in my hand.  Time card for the office and the orange permanent marker that needs to go back to the pen cupboard before I write on the whiteboard with it (again).

I walked to the office and back to our room again.

With the orange marker in my hand.

Seriously.

Luckily co-workers and Jeff are adapting.  Six months ago Jeff would ask me the same question three different ways with the hope of jarring the answer out of my brain.  Now he asks me once and, when I cannot even fathom the answer, he walks away. 

No use beating a dead horse. 

Co-workers are better at figuring out the answer because there’s more of them.  Disperse the work.  They are also really good at coming up with my four things I need for recess by just handing them to me.  They put up with me walking down the hall chanting “time card to Jeanette, timecard to Jeanette” and know not to talk to me until after I’ve gone to Jeanette.  I also need every answer sheet available because I sure don’t know what an idiom is or the moral of the story about the Magic Genie.

How I explained it to Jeff was, wake up, don’t drink your morning coffee and go about your day.  When you think you’ve got a handle on it, suck down some cold medicine.  Then you can have the fatigue as well as the foggy brain.

#BeLikeCarey

No, don’t #BeLikeCarey because I’m relying on you to think for me.  You really don’t want me going this alone.       

Give Your Nose Hairs Some Thanks

Some LOVE from the co-workers.

I never realized how helpful these little follicles were until I was standing in a 2^nd grade classroom after a cold recess without a tissue in my vest pocket.  As I frantically looked around the room for the Kleenex box (in the past four months I’ve gotten really good at spotting them the minute I walk in the door), it wasn’t in its usual spot.  Dang kids used ‘em all up!  Asked the teacher where the box went as I’m frantically sniffing away, trying to not to drip.  She sent a student running to the front of the classroom to grab me the box I couldn’t find (kids are faster than grownups).  I pulled the tissue out so fast I ripped only a corner off so I grabbed at three more.  One went to the drippy nose, the other two went in my pockets for backup.

Really, though.  Nose hairs do have their usefulness.  It is to keep the snot in your nose and not dripping out.  When chemo takes that hair away like most of the rest of my body, it can really mess things up.

Like, really mess things up.

So if you hear me sniffling frantically, just point to the nearest box of soft nose glory and we’ll be good.  And on behalf of all chemo patients, buy stock in Kleenex.  It’s probably a safe bet.

Well, That Didn't Work

I was pretty well dressed (really cool earrings) and had even done my makeup.  I was ready to be back at work, teaching.  

Morning went fine, kinders were great.  First graders put up with the fact that for 15 minutes I taught them a word they had learned with me the week before.  Second graders learned to answer in a complete sentences (“meat and apricots” is not a full sentence.)  Recess was fine (I think the soccer players were hacked at me with my jersey-handing-out-ninja skills so the teams were more even) and we were on to the lunch room.

Where it all fell apart.  Not because of the kids.  The kids were fine.  My stomach decided to go into labor.  Spaztically.  Again and again.  Nausea and pain set in.  Again and again.  I made it through because there were several times of “that’s done – what the hell was it anyway?”  Took some Tums part way through and it just kept happening.  Thought I could eat something.  Until the throw up tingle started.

I’ve said it before and I’ll say it again – I’m nobody’s hero.

With the help of staff workers who packed my stuff and told whoever needed to be told that I was no longer on campus, I drove home.

I think the texts to Jeff read “I’m coming home,” “In town. Gonna puke.”  

Love language.

To my credit, once I got home I was able to throw up, have constipation and diarreaha in the same 15 minutes.

Knocked it out of the park!

I have no idea why this happened.  I’ve never had any of these symptoms before and certainly not this late after chemo.  I mean, it’s Day 8!  Plus I didn’t even get one of the doozie throw upy chemos.

So what gives?  I have no idea, but I didn’t like it ONE BIT!

I’ve slept twice already and am working on crackers and chicken broth all under my heated warm blanket that I’m having to share with the cat.  Both dogs are begging for the Saltines because this is all about them.

So I don’t know what that was all about, but I don’t want anything to do with THAT!  Out of the blue after a week of good days – who woulda known? 

And I’ve already taken tomorrow off.

Thanks to everyone who picked up the pieces for me! 

Done With Staying Home - Back To Work

That’s not really an appropriate title.  It’s sorta a lie.  Because I haven’t really stayed home.

I had chemo on Tuesday.  Wednesday we were back at Evergreen for my Nuelasta/White Blood Count-Upper Shot.  Thirty minutes after that shot, I was at Physical Therapy getting edumucated about Lymphodema.  Thursday I drove myself to Evergreen again for a hearing test.  Friday I did stay home.  Saturday was a gymnastics competition in Monroe (no I was not a participant – thanks for asking).  Sunday was the Everett Home and Garden Show.

Bottom line – I haven’t really been staying at home after chemo.  Now, to be fair, Jeff does most of the driving (especially on days when I am seeing double vision – that changes drivers real fast) and we go at our own pace.  The Home and Garden show was a lot of wandering real slow and aimlessly listening to people sell me their wares.  Oh, and stealing pens.  Er, getting pens.  Actually, Jeff went for the pens, I went for the chapstick and tape measurers.  And the flat carpenter pencils. 

Anywho.

It’s a lot of aimless “let’s start this and take a nap” kind of business.

Until today.

I’m vacuuming the house before an appointment in Everett, thinking about the appointment in Kirkland tomorrow/Tuesday and not wanting to go to said appointment (it’s the dermatologist for a rash that has since cleared up – how dumb would it be for me to go to an appointment when I have NO symptoms!).

 

So I canceled it.

Then decided to cancel my sub and go back to school.

Luckily the sub was good with it.

Because I’m coming back to work a day earlier than I thought.

I don’t know if it’s because I only had three chemos instead of four.  I don’t know if it’s because I’m handling this chemotherapy business so well (that’s a bit delusional).  I don’t know if it’s the good meds and the acupuncture.  I don’t know if it’s because I don’t feel sick and I’m tired of being at home.

Or all of the above.  Well, not the delusional one.

So, yes I’m very tired.  Yes, my tongue still feels burnt.  Yes, I will probably have a rash on my face.  Yes, I’m very tired.  Wait.  I said that one.

But I’m popping a Vitamin b6 and packing a lunch. 

Remind me that I’ve left my coffee mug/coat/radio/vest/glasses on the back table BEFORE I walk out the door.  Or just send a kid out to recess with said items.

Let's Do This - Round Three Chemo

6:04 am, eating my bowl of Cheerios with the Chemo Bag packed (sorta like a birthing bag - and with kind of the same stuff; ipod, snacks, clean socks...) and waiting for 7:00 am to leave.  The port has been smeared with lidocane and I am my plastic bag sounding self (although I am learning to not cut the squares so big - 3x3" is good vs 8x8" the first few times).

By 5:30 tonight I will be halfway through this chemo regime.

Remind me of that in four days when I feel like crap.

Nicely.

We would appreciate prayers, peaceful thoughts, no-puke dances, that kind of stuff.

What's Chemo Like?

I’ve gotten this question a lot, so I’ll try to put it in a nutshell.

BORING.

K, fine, I’ll get a little more detailed.

Before I leave the house, I smear lidocane cream on the port site.  I then put press and seal on top of it to make it stay on my skin and not my shirt.  I then get ready while sounding like a plastic bag.  I dress in leggings and a button down shirt.  The button down shirt is because they need to get to the port by my collarbone.  It would be really uncomfortable to be in a crew neck t-shirt to get to the port.  So I have two shirts I rotate between and a tank top underneath.  After making sure every electronic we own (iPod, tablets, phone, laptop) is charged, off we go.

Once at the hospital, I do a weight check, they access the port and do a blood draw.  The doctor comes in with my numbers from the lab and we talk about reactions from the last time.  This is usually about an hour.

After that, off to the infusion center down the hall.

I find my vinyl brown lazy boy chair and we settle in.  The nurse takes my blood pressure - gosh that’s fun – and usually ends up calling the doctor back in based on those numbers, or the totally red flushed face from the anxiety.  Take your pick on that one.  After that 15 minute go-round, the nurse checks all the concoction numbers and starts bringing in IV bags.  There are at least five.  At some point around here, they flush out my port.

Now I’m a toilet?  No.  They hook up a syringe with saline in it and literally push the saline through the port.  Where it goes, I have no idea, but there’s a lot of it in me.  I think I pee it out.

By now I’m given an injection of Lorazapam which makes everyone happy.  It is immediate.  Then the nurse can actually do her job and I’ve shut up.  I tend to get a little yacky because, it’s not that I don’t want to be there, but I don’t want to be there.

They hook up one of the targeting chemos and we are off and running. 

I am attached to a wheeled IV stand that I know full well how to unplug from the wall and take for a walk.  I usually hit my foot/ankle at least seven times, but I’m on Lorazapam and just don’t give a rip.  I go to the bathroom and stop off at the snack bar – a lot.

The snack bar.  My favorite place.  Orange juice, V8, water, apple juice, granola bars, hummus, little red cheeses that are too expensive for me to buy, granola bars, pita chips, soup, crackers, coffee, tea...  I know I’m forgetting stuff, but that’s what I ate one day.  Yup, one day.  We were there for eight hours.  Not making excuses, but…

I was asked if chemo hurt.  Nope.  I don’t feel anything and it’s not necessarily because of the Lorazapam.  When they access the port, even the inch long needle doesn’t hurt because I’ve numbed the skin on top of the port.  I don’t feel sick during the chemo because they start with at least two anti-nausea medications.  The Lorazapam also has anti-nausea capabilities so I don’t feel any of the yuckyness.  I don’t feel any of the chemo or meds or anything going in.  I sometimes taste metal when they do the flush/saline, but that’s it. 

They start in on the second targeted chemo drug.  These don’t necessarily cause nausea so I don’t think I get the IV bag with all that anti nausea/steroid stuff until after this one’s done.  Each bag takes between 30-90 minutes to drain.  I “beep-beep” when I’m done.  Sometimes I beep-beep through my nap.  Or in the bathroom.  Or at the snack area.  Anyway, I know I’m cooked at that point and we (we? Like I do it) the nurse changes out the bag.

At this point the cool cap is going on.  Spray the hair really, really wet, put the cap on, put   I can feel the cold going through the channels in the hat and its cold, but I don’t get the brain freeze or headache.  Of course, the first time I had a really full head of hair and the distraction of the nutritionist and the second time I still had the full head of hair and my parents as a distraction. 

the cover over the cap and fire that sucker up.

I did find out last time that I could still put ear buds in and arrange the hose attached to the cooling machine and take a nap.

Yeah, because by this time I’m on my second nap.  Thank you Lorazapam and I’m sorry to Jeff and whoever visits because I’m not very entertaining. 

Then the nurse comes in in a plastic gown, mask and gloves (before this she was only wearing gloves to hook up the IV bag).  Now she’s gowned up like I’ve got anthrax or something.  Well, I don’t, but apparently chemo drugs are toxic.

Who knew?

I got an idea; let’s hook them straight into my heart!  Yeah, that’ll be fun.  And they do.

Another 30-60 minutes.

And repeat for the final chemo drug.

Yup, four separate drugs; five separate IV bags and one injection straight into the port.

Then we hang out, not hooked to an IV bag for another 90 minutes with the cool cap on.  In order for the cool cap to work, the hair follicles have to stay cold even AFTER the drugs are in my body.  Probs because the drugs are spreading EVERYWHERE.

Finally, we pull the cap off – learning after the first time to wait at least five minutes to take it off because it freezes to my hair and pulls some out if we don’t – pack up and LEAVE.

Only to go back in 24 hours for the Nuelasta shot.

So that’s Chemo Day in a nutshell.

Thanks for letting me relive it. J

C'mon Tuesday!

I once read about someone who dreaded the day of Chemo.  Absolutely hated it.

Not me.  Bring it on. 

Because every one I do brings me closer to being the LAST one I do.  If I could cheat and have this particular cocktail every two weeks, I would.  Not that I’m in love with the side effects, but so far (please, please, please continue to be so) they are manageable.  Couplea pills, lotsa liquids, naps, (tons of naps) aimless walks with the dogs that are just happy to be outside and one very patient husband.  The face rash that makes me look like I have the chicken pox, the mumps or some other dreaded disease is HIGHLY annoying and I wish I could get a handle on that. 

But even with that, I CAN’T WAIT FOR TUESDAY!

Another day closer to Day Done!

A Month With The Alien

The port hooked up to the IV

The port was installed a little over a month ago in a surgery that I don’t even remember happening.  I mean, I remember being there, in the room (I’m not THAT out of it).  I remember them telling me to move from one bed/table to another and I remember kneeling on the bed.  I don’t remember lying down, counting backwards, the warm blankie (WHY can’t I remember the warm blankie???), nothing.  Just having a dream and waking up and some nurse asking me some question.  I went back to sleep only to realize she wanted me to wake up so I COULD LEAVE.  After all, that was our marathon day of tests and procedures and lockdowns and just a plain ol’ party.  (Looking back I wonder if I just made all that up.  Nope, couldn’t possibly have made that up.)                                        

I expected the port surgery to be one little slice, insert, sewing session and we’re done.  Well, for the doctor it was.  Five days after the surgery I wanted to rip the thing out of my chest.  

I had my first chemo six days after the port was installed.  Ironically, that was when I came to terms with the Alien.  To access whatever hose the port has, they poked a hole in my skin.  My fine, taught, tender skin.  After all the port is almost half an inch tall, it’s under my skin, by my collar bone area.  So my skin really had to stretch to make room for the thing.  Poking that hole in my skin seemed to give it some breathing room and alleviate the stretch.

The port and scar

Who knew?  

After that, the thing hasn't really bothered me.  Most days I forget it’s even there.  Supposedly I’m not supposed to lift weights over ten pounds, but I can still hoist the case of bottled water from Costco.  I sleep flat on my stomach with no problem and my clothes don’t bother it.  

In other words I’ve stopped bitching about it. 

When have any sort of infusion, IV’s, blood draws, whatever, at least an hour before the appointment, I make sure I put a bunch of lidocane cream on it, followed by a square of press and seal saran wrap.  I sound like a plastic bag when I walk even though it’s a four by four inch square.  The press and seal sticks pretty well because I’ve put it on and then driven, shopped, walked all an hour or two before the appointment (gone to other appointments…).  When they go to access it and they come at me with a one inch needle (I never watch; but Jeff does), I can’t feel the needle pierce the skin AT ALL.  And as long as I taste metal after the nurse puts it in, we’re good.  If I taste no metal or feel a burn, Houston, there’s a problem and GET IT OUT. 

Here’s about as good as picture as I can get.  If you “pledge allegiance to the flag” with your left hand, it’s at the very tip of your middle finger.  You can see the raised bump and you can see three little raised dots.  Maybe those are like the runway lights so the nurse can see where she’s supposed to aim.  Go for the middle.  Please.  Don’t miss the middle.  Again.

Taste Bud Snafu

You know when you have a cold and your nose is stuffed so you have chicken soup with chicken and corn and beans and noodles and it’s going to be salty goodness on your throat and sinuses?  You put the spoon in your mouth and wait for the taste bud explosion. 

And nothing.  No taste.  No salt, no garlic, no corn, no nothing. 

That’s what chemo taste buds are like.  

Sometimes. 

It can be where you taste absolutely nothing.  Cardboard.  Texture.  Hot or cold.  That’s it. 

Those are the good days. 

The bad days are when you go to eat something you know what it is supposed to taste like – and it doesn’t taste anything like that.  Most days fall in this category.  

Take Chex Mix.  I make this stuff by the vat.  Cheetos, chex mix, pretzels, oyster crackers, butter, Johnny’s salt, all sorts of goodness.  Can’t even describe the taste after chemo.  Not metallic, not cardboard, minerally.  In other words – gross. 

They say try foods you don’t normally eat.  There is some credit to this.  We’ve lately gotten a hold of beets.  Beets.  Never been on the menu, but “they’re good for you.”  Gone through two cans since chemo started.  Only problem with this theory is that you don’t know if it will taste good, so you don’t want to try it.  Which just leads to another circle because the food you know what it tastes like, doesn’t taste anything like what it’s supposed too. 

On the flip side, my go-to is salt, not chocolate.  That being said, last night I opened one of the (many) Godiva chocolates that we swiped from the Costco vendor when she wasn’t looking.  Took one bite thinking the rest would go to waste.  Let it melt in my mouth, sat down in the chair, got up out of the chair, walked over and ate the rest of the chocolate.  OMG, now I get people’s chocolate cravings!

That being said, I tried my usual bowl of Ruffles salted, ridged potato chips.  Nothing.  No salt, no drooling, no goodness.

No good. 

They say this goes away after chemo.  I see people who have had chemo and they don’t seem to have these aversions.  Here’s hoping!

A Week Into Round Two Of Chemotherapy

I guess it’s not really a week, though.  The math makes no sense to me.  Chemo is Day 1, Tuesday.  But today is Monday and it hasn’t been a week, but it’s Day 7.  There are seven days in a week, but I’m only counting six days. 

Welcome to every day in my head.  Maybe it’s just “new math.”

Really, that is about how it has been the last 6/7 days.  One fog after another mixed in with some nausea, CRAZY taste buds, a face rash, fistfuls and comb-fuls of hair, a dry nose that bleeds at the drop of a hat and fatigue that drops me to my knees (actually, to the waterbed, my head covered with a blanket and pillow).  

They sound the chemo rounds are cumulative.  Round One didn’t necessarily leave my body and then wait for Round Two.  Apparently there was some leftover Round One for Round Two to stack on top of.  And stack it did.  

The Nuelasta shot so far has been a God-send.  First off, no daily trips to Evergreen.  Second, I started Claritin for the bone pain on Sunday even though Nuelasta wasn’t until Tuesday.  Good move.  I had some bone pain in the butt and legs (sort of like I had worked out really hard the day before – yeah right, hard work out), and I felt like a little old lady for a couple days.  I also did not have the swollen tongue or rash all over my back, shoulders and chest (some on the face; might be a result of the Noxzema – no one’s ever sure).  Knock on wood, please Jesus, let that be it.  I was also on steroids for an extra three days to stave off some of the side effects. 

Worked for a while. 

Biggest one was the fog.  The fog is real, people.  My parents came to see me during the treatment.  Sorry mom and dad, but I have no idea what I talked about, or you talked about, or the nurse talked about.  I felt really out of it.  After treatment we went to Costco and I literally did the toddler walk-cross-wise-in-front-of-every-grown-up move.  Apologizing to toddlers as I did it.  Later on in the week Jeff and I would go out to grocery shop and I would stand in front of something and just stare at it.  Jeff later said, “You used to be in and out of stores.  Now you wander.”  Luckily this does pass and toward the end of the week I get back to more “normal.”  

Until the next dose. 

Chemo.  Toxins that take me to the brink, to cure one little quarter size mass that could really mess up my life.  

Circles.  Always circles. 

New Rules When It Comes to Chemotherapy

With Cancer/Chemo comes new rules.  Now me, I like rules.  Sometimes.  If they make sense and are applicable.  If not, they’re just dumb and I don’t follow them.  But if the rules fit in my box, I love them.  ‘Cept some of them around here are new and have been implemented as a standard necessity for getting through this new life with as few head-knockings as possible.

Here are a few:

Carey Only Does One Thing At A Time.  Always.  For everything.  One night I said I would make the mushrooms to go with steak and potatoes.  Which I did.  Dumped ‘em in a pan of Johnny’s seasoned butter, turned the burner on low and then went off on the computer.  Then made a phone call.  Then ordered ink on Amazon.  Then did the chickens.  Came back in and Jeff had finished the steak.  Oh, that’s right, I was making mushrooms.  Crap.

Carey Always Tells Jeff Where She Is Going In The Store.  Otherwise she is an errant child who lost her parent and the parent is full and well pissed off by the time of reconnection.  Goes with the one thing at a time business.  I’m walking, I see cute towels, Jeff is looking to see if the Instant Breakfast is on sale and it’s all gone completely to pot.  Again and again and again.

Especially At Costco.  Which in my defense, is usually following a procedure/chemo/some other “trauma” where I am so drugged out I can’t find the hand attached to my arm, let alone remember that a spouse drove me there.  Look, cute kitchen towels.

Buy Only A Few.  When I went back to work all the kids had grapes in their lunches.  So I wanted grapes.  No, I did not take grapes out of their lunchboxes, before that little rumor gets started.  Jeff, darling that he is, purchased a full bag of red AND a full bag of green just in case I was color sensitive.  I ate three grapes.  Two red, one green.  Okay, little exaggeration, but I came nowhere near decimating either bag.  The chickens ended up very happy.  So now when I have a hankering for something, buy a very small amount because the hankering is as long as my attention span.

Stop Drinking Coffee In The Afternoon.  Seriously, it makes me want to throw up.  Yet every afternoon around 4:00, I go to the coffee pot, pour it, nuke it and almost puke it.  Actually I don’t, that just rhymed.  It does make my stomach sour and every single day I wonder why I do it.  Only to do it again the next day.  Learning curve, people.  Not so much.

Burn The Steroid High Day To-List.  On Steroid Crash Day, which is the day that follows Steroid High Day, the day after Chemo.  Because otherwise I see this list of things that seemed utterly possible to do the day before as insurmountable obstacles that just make me want to cry because I’m a sleepy weakling.  Did I mention that prior to the cancer diagnosis a “successful day” was one where the to-do list got completely done.  Hence the match to the Steroid High Day List. Let’s just not take that to the party and call it good.

Comb Hair Outside.  Save the vacuum.  Save Jeff’s sanity having to sweep it up.  Save Carey from an emotional meltdown when she pulls GOBS of hair off her head and has to throw it in the garbage can.  It’s just easier to go outside, comb, shake and walk back into the house.  Oh, and shake like crazy because all the hair sticks to whatever you’re wearing.

Cancer changes you, people. Good or bad, holy cow, it changes you.      

I Have Cancer

Like, I just realized it.

I’m laying in bed yesterday for my second (or third?) nap wondering why in the tar am I so tired.  Then it dawned on me that two days prior I spent five hours getting toxins put in my body that the nurse wears gloves, gown and mask on to administer. 

And I lay there wondering, how come they’re doing that.

Um, you have cancer, little lady.

Honest to Pete, that was going through my head like it was some sort of sudden realization.  I was outside my body just now coming to this conclusion, despite being on this roller coaster for over two months.

I guess I’m just a slow learner.  Or in a lot of denial.  Or still hopped up from the meds on Tuesday (they might need to lower that relaxer one; I was really loopy this go-round).  Or it’s chemo brain.  We could call it all sorts of stuff.

Chemo Round Two In The Books

The day at the  hospital started at 8:30 am and we left at 5:00 pm.

Two targeted Chemotherapies
Two general Chemotherapies
Steroids
Anti-nausea Meds
More Anti-nausea Meds
Lorazapam

Because the dosage of the meds is based on my weight, and I’m a total lightweight, when it came time to step on the scales, I stripped.  Not like strip stripped - c’mon, people.  But I did take off the coat, purse, vest, boots to get me as low as possible.  Figure I dropped 3-4 pounds just with that.

THEN I told the same nurse who missed last time that we were waiting to take the blood pressure until after the port was inserted – correctly. 

She said, “Oh, was it missed?”  Pause.  “Did I miss it?  It think I remember missing it.”

Since it was so memorable for you….

Anyway.  Went perfect, tasted metal (only in the medical industry does “taste metal” mean success).

And now I’m ready for bed.  Despite three naps.  My parents came and I was all sorts of entertaining (NOT) but that’s how chemo is.  A whole lotta nothing except a whole bunch of drugs/chemicals/poisons/cancer-killing stuff being IV’d into my veins. 

Hair We Go - Chemo Round 2

You wanna know how long I've wanted to use that?  Well, not long since I'm "only" two months into

this, so I guess it's not long at all.

That wasn’t impressive.

Anywho.

Yup, some of the hair on my head is coming out.  Not much.  Just enough to think the Paxman isn't doing it's freezing-arse job, but it is.  I expect to lose about half of it.  Sounds like a ton, and it’s pretty freaky pulling out 12 at a time with one swipe of the comb, but it’s what I expected.  Little ticked off I still have hair on my legs and under my arms.  C’mon, I need some silver lining with this whole chemo-thing and not having to shave the pits or feel the wind beneath the hair on my legs is one of those linings.  And my lip hair.  Those can go the way of chemo too.

Too much?

8:30 is check in time.  8:32 I shall be declining the blood pressure cuff until AFTER they have accessed the port.  One less really high situation-induced number.  There’s enough on my charts that would have a psychologist drooling (“wait, she wanted rum in her blood sugar-regulating orange juice?” – well, yes, vodka before that and no one was bringing me any flipping vodka!). 

8:40 THEN they can take my blood pressure.

PS: These times aren’t real.  It takes FOREVER to unwrap all the pokey needle things and special gloves to access the port.

I would appreciate all the prayers and happy thoughts you all could send my way. For easy access to the port, for a very patient nurse, for me to remain calm and keep my eye on the prize, for good snacks, for Jeff to get wifi access...  You know, important stuff.

Welcome To Jeff's Life

Seriously, the new favorite drink.

Me at the hospital:  “Oh my gosh, I’m craving a roast beef sandwich on a plain bagel and a tomato

with lettuce and mustard and some of that cheese we have.  Like NOW!”

Me at Fred Meyer 30 minutes later:  “Pizza looks good.”

Like every ten minutes. 

Welcome to Jeff’s life.  Pray for the poor guy. 

Getting Into Trouble With The Doctor

Relaxing after chemo.

“Are you a bad patient?” I was asked at school a co-worker.

How many minutes have you known me to know the answer to that one?

Of course I’m a bad patient.

You see, I didn’t get the chance in early childhood education to read the script a medical student was given when they are set to deliver bad news such as “You have Stage 2 invasive mammory carcinoma”.

So naturally I revert to my early childhood education classes.

How to argue effectively.  How to get someone to do what you want them to do.  How to make people focus on what you are saying.  How to stop someone from talking – nicely.  How to divert attention. 

Some of you who know me are thinking, “Now how come she doesn’t use those with kids?”

*insert blank stare here* (I might have learned that one in school too – the art of silence)

So how have I gotten into trouble with the doctor? 

• ·       The doctor who told me I couldn’t work while in chemo without even asking what my job was (or introducing himself, or even making chit chat to get to know me) – I pretty much just walked away from the noise/script he was blathering.
• ·       I worked out at the gym the day I got my second Granix shot (my defense was if things were going to hurt, it could of either hurt because of the shot or my workout).  Apparently there’s a TON of germs at the gym.  Go figure.  Maybe more than school.
• ·       My max arm weight is 10# at the gym.  In doing wing weights (my name for the ones you start at your side and bring them together prayer style – again, early childhood education, not gym degree) 10# flew together.  Upped to 20#.  Much better.  I already look like a lazy dork at 10#.  You can’t even use the pin for 10#.
• ·       Asking for rum/vodka/frosting as accutramints at the ultrasound biopsy.  I was hopped up on lidocane and anxiety on that one.  And I’m pretending delusions are a result of too much lidocane.  It might be on WebMD.
• ·       Using my birthday European style, putting the date before the month when asked my secret password by the doctor.  Luckily the nurse who was my cohort got more of the doctor’s glare than I did.  No square, didn’t care, had that lidocane.
• ·       Requesting my blood pressure be taken AFTER they insert the port.  Not that it was any better.  Probably should have let them, not allowed to write them down, and used it as a baseline.
• ·       Stripping down to the street-legal basics for a weight measuring.  Those chemo drugs they give you are based on your weight.  No one needs to be sticking more poisions in me because my purse, coat, boots and vest weigh an additional four pounds.
• ·       Drinking about eight gallons of water for the actual chemo treatment.  Something about too low of sodium.  I call BS.  And I need something to do during chemo.  So liquid consumption and subsequent multiple/constant bathroom breaks/field trips are in order.  In my mind it flushes that crap out of my body.

 

(Only I would call cancer killing/life saving medicines “crap”, but I did).

1,024

That’s how many miles we have put on the car since the day of diagnosis.

That would almost get me to Las Vegas.

If you count the two trips to Evergreen Monroe for the two mammograms, it WOULD get us to Vegas, but it’s too much math on a Saturday afternoon to prove it. 

Vegas sounds more fun than Chemo.

Just sayin’.

Two Months Into Diagnosis

Some days it feels like it has been twelve years, other days only a week and a half, but it was TWO months ago, December 8^th, that I was officially diagnosed with Stage 2 Breast Cancer. 

Since that time I have had:

 

4 mammograms

2 ultrasounds

2 MRIS

2 biopsies

1 heart ECHO (which was sorta an ultrasound)

2 surgeries

3 blood draws

2 port insertions

Nope, THREE port insertions because one was a “miss” (it wasn’t inserted correctly, but I am still counting it since that damn needle pierced the skin!)

1 chemo treatment involving four cocktails

3 Zofran anti nausea pills

5 bone jarring Granix shots

16 trips to Evergreen Hospital/Seattle Cancer Care Alliance

12 temper tantrums (thereabouts…)

55 sleepless nights

2 Valiums

Countless friends and family who hold me up and pray for me when I get angry/pissed/self-absorbed/frustrated/scared/scared/scared.

And one God who dang well better be in charge of all this because we know I’m not all that reliable.

A Working I Will Go

The first oncologist got his butt fired because he had the gall to tell me I couldn’t work during my chemo. 

I get it.  My immune system is compromised (in my defense, he was going to be the one doing that to me, so there) and I work with little petri dishes kids.

But I pushed the “up” elevator button at Evergreen Hospital that was probably touched by people with the flu to get to his office that morning.

So really, I wasn’t safe anywhere.

And we quickly found out I wasn’t safe staying at home, on the couch, for more than four days.

Good God, I started wars with Jeff, the cat, both dogs, a goose and a noisy cockatiel (the goose DID deserve it). 

They all wanted me out of the house and SO DID I.

Once the really frightening rash on my face cleared up.

I had chemo on Tuesday, Granix shots to up my white blood count, and was back to work on Monday.  I needed a little more time between classes to wash my hands, make sure I always had a water/juice/tea, and then the subsequent bathroom breaks ALL THE EVER-LOVING TIME, and I had to make sure I ate when I was hungry.  Other than that it seems I jumped right back in to the happiness of all of us.  I do get mind numbingly tired around 12:15 until the Vitamin B6 capsule takes effect forty minutes later, and there’s a 30 minute nap waiting at 4:15 pm.   

The goal is to make it all five days this week, something I haven’t accomplished since the middle of November (Thanksgiving break, though – that one wasn’t my fault).

Considering I worked a grand total of SEVEN full days in the month of January, not bad.