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.

Getting Cancer-Free Timeline

I get asked a lot, “When is your Cancer over?”

Well.  Seems easy enough. 

It’s not.

Which chemo?  And radiation?  And surgery?

So here’s the (sorta) short answer:

TCH+P Cocktail – what you actually think of when you hear “chemo” – Every three weeks from January 23^rd, for six rounds (May 8^th will be the last if the cancer follows MY calendar).

Lumpectomy Surgery:  Three weeks after the May 8^th chemo.  (So around the end of May)

Targeted Chemo: Every three weeks for a year, until January 2019.  This is an IV chemo Herceptin for the HER2+ nastiness.  

Radiation: Five times a week for three to six weeks, three weeks after the lumpectomy and during the targeted Chemo.  (Starting around June 19^th, daily, Monday through Friday, until either July 10^th or 31^st).

Hormone gunk:  Since the cancer is fed by hormones as well, five to ten years of hormone treatment.

As a good friend said, when I came close to losing, it realizing just how long this “disruption” is, “One step at a time.”

Symptom Free Friday

Finally!  One little mouth sore that is not causing unrelenting pain and THAT IS IT!  No nausea, no fatigue, no rash (well, a little on my back, but not enough to count), no bone pain, still have my hair (knock on wood), no sores on the back of my throat so I can’t swallow, no bloody nose, no toe tingling, no feet swelling, NOTHING.  KNOCK ON WOOD!

They did.  They got me “normal” for a week and I get hit again Feb 13^th.  Just in time for Valentine’s Day.

The good news about all the symptoms?  If every GOOD cell in my body is dead or dying, the CANCER has GOT to be dead or dying.

Silver lining

Chemo Bingo

I need to make up some bingo cards for Chemo.  Squares would say things like:

Nurse Missed the Port

Nurse Pounds in Second Attempt

Crying over Port Tape Removal

Emotional Meltdown

Subsequent “Relaxer” IV Injection

Hit IV Pole on Ankle on the Way to the Bathroom

Snack Run

Water Run

Warm Blanket Request

Nurse in Blue Gloves

Nurse Now in Thicker Orange Gloves – and Gown

Nap in Chemo Chair

Brain Freeze

Rash on Face

Back Rash

Nausea

Dry lips

Mouth sores

Peeling fingernail

Peeling toenail

Dry nose

Bloody nose

Fatigue

Steroid High

Steroid Crash

Forgetfulness

Food Tastes Like Cardboard

Burning Granix shot

Bone Pain

Back Labor

Swollen Tongue

Hair Loss

Prescription Write Up

Prescription No Thank You

I could do body functions but that would just make too elementary-school, “potty talk” (which I’m not above, but my mom and Kira read this).  I also know I’m missing 328 side effects, but I have chemo brain.

Then, for more Bingo cards we would have the blood pressure readings:

No numbers lower than 80… and … no numbers lower than 80 … but pretty good into the hundreds (sometimes both the top and bottom numbers, I’m such an overachiever).  My blood pressure has seen numbers where nurse/doctor people stand really close to me and shoot worried glances at each other.  In my defense, one of those times it was pre-“official”-diagnosis, following an ultrasound biopsy and the doctor and I were looking at this huge black mass on the screen and she was telling me “we are already putting a (cancer) team together for you.”

Shut up about that just being “one of the times.”  You coulda just skipped that part.

Who’s got paper?