Controlling what I can control

As anyone who knows me knows... I like predictability and order. I like to make plans.

Okay, fine... I like to be in charge. (Uhm.... I may or may not be a little bit of a control freak.)

This particular personality trait of mine has probably suffered/struggled the most in the nigh-on-five-year battle with the big C.

And while I have learned to let go of control of many things in my life... I could not, I would not, reconcile myself to letting my long, brown, hair just fall right out of my head. (Also, the dream lives on that I'll find a wig maker in the US who will be able to do what I want to do with my hair.)

So, I made plans to cut it this weekend. 

I had texted The Designated Ball Family Head Shaver (Aunt Cindy) from the waiting room when I was checking myself in for chemo last week, to ask if she could come this weekend and do the duty. (Hair typically falls out 2-3 weeks from the first chemo treatment, and I wanted to make sure I had my hair cut before it fell out. Also, President's Day weekend affords a little extra wiggle room for travel time.)

She called right back - and had to talk to Judy, because by then, the hospital clerk was actually checking me in - to say she should come.

And the plan was on.

I added my cousin Rachel into the mix when I had a wild hair on Wednesday and asked if she would come with Syd. Bless Rachel's heart for dropping all of her many plans for the rest of the week/weekend (and the heart of her mother-in-law who took ownership of Rachel's five children), so she could be here.

I woke up this morning and... didn't wash my hair right away. (Because Rachel had spent the night here, while Judy and Cindy and Rae (Cindy's grandaughter, my cousin Amy's cute kid) slept at Jo's.) Rachel and I sat and talked and laughed and talked and... didn't get much done. (We heart Cousin Bonding.) Until around 11:00, when the actual grown ups came home and made me take a shower so I could wash my hair.

For those of you not in the know... when one is going to donate one's hair for a wig the rules are simple: clean hair, air-dried, with no product in it, bound in real rubber bands (not the fabric-covered kind we actually USE for ponies these days).

Since the official cutting time was 2:00, 11:00 was... sort of pushing it. (It takes my hair around 3 hours to dry. Crazy, right?!)

By 2:00, everyone was here (Judy, Cindy, Rachel, Katie and Jo), but... my hair wasn't all the way dry yet. So, we sat around and talked for a while. Judy made fried eggs and toast for lunch (my favorite), and then we passed around the sugar cookies that Jo had brought (because you HAVE to have sugar cookies on Valentine's Day!).

It was probably around 3:00 that I took my seat in the kitchen and they started putting the ponies in my hair. Because I want to use the entirety of my hair for a wig, ponies were positioned as closely to the scalp as possible. Starting at the top, and going down through my layers (this is when it helps to have cut your own hair, kids... you know exactly where your layers start and end), everyone took a turn in pulling hair into ponies and/or cutting them off (save the Ball Family Designated Head Shaver, because her responsibility is to SHAVE the hair, not CUT the hair).

All in all, we ended up with 11 ponies. They're small, roughly four ponies for each layer. But they are long. (18 inches. Every blessed one of them.) And when you put them all together, it's still enough hair to fill the lap of a grown woman (with... erm.... not a small lap).

Cindy then took hold of the clippers and shaved my rag-tag ponytail haircut into submission. As per the instructions from the doctor, we didn't go directly to the skin. My hair's about 1/4 inch long right now, which is as short as they recommended going. As you may recall from my recent ACNE post, my skin is all kinds of irritated and sensitive these days, and  the thought of razor burn on top of what is already swollen and tight makes me cringe. (Who's kidding who? I have the face of Gollum right now, and didn't want to risk continuing what's happening on my face up onto the top of my head.)

So, that's it.

It is done.

18 inches of hair - a literal lap full of hair - has been removed from the top of my head. On the one hand, it's surreal. I can't believe I'm really here, at this place. But I am. And I'm okay with it.

The truth is, the chemo had already changed my skin - and, by association, my scalp, and, thus, my hair. The hair I brought home with me from the hospital was not the same as what I wore in. That made it easier to cut.

I'm so incredibly grateful for the support system that I have, near and far. 

Today was  a good day. Spent in the company of some of the women whom I love the best.

And now I get to try and figure out scarves and beanies and all of the other head coverings out there, besides hair. Should be a real adventure.

Suckah!

As frequent readers may recall, yesterday I issued a (bold-ish) challenge to come back today to see if I am:

A) Even more of a leper

B) Decided to set some Friday goals

C) My right nostril had completely caved in on itself, and I am now struggling to breathe through a mangled nose

I sure did NOT set any Friday goals. 

In fact, I moved my Friday goals to Monday. And when I mentioned that (via text) to my fabulous cousin Becca, she volunteered to take over my Monday goal for me. (God bless Becca!)

Also, I am please to report that the Acyclovir has almost made my nose whole again. Don't get me wrong. It still bleeds when I blow it (which is semi-constantly), but it doesn't have the throbbing ache of yesterday, and the swelling seems to have gone down. So, that's a win. It seems, at the end of all this, I'll still have a cute nose.

Now, there's something to hold on to!

Which brings us back to A.

Uh, yeah. I sure am more of a leper. An incredibly ugly one. (Note: these pics were taken this morning. I kid you not when I say that the acne has gotten angrier and uglier as the day has worn on.)

Even Judy has remarked on it, "Your face is SHINY. ... And your face is NEVER shiny!"

For real, every time I walk by a mirror, it's like roadkill. "Has it gotten worse, I wonder? I bet it has. Do I want to know? NO! ... Yes. NO! Baaaaahhhhhh! .... It's wooooooooorse!!!"

In the immortal words of Roomie Wood (I texted her the shot below this morning, thinking my ugliness would help her feel better about her swollen cheeks from having her wisdom teeth removed), "Not acne! Not the terrifying puss-filled hills that grow on your face that induce ridicule and judgement. This is enough. I refuse to let you suffer any more!"

Seriously. Acne stinks. Esp when you're 40 years old and going through a smattering of OTHER chemo-induced ailments (this just in: I have a raging bladder infection).

But, as Judy and I keep discussing... would ya take a gander at how thin my neck looks?! It appears that the acne, at the very least, is a distraction from my double chin. So, there is that.

Goals

I'm pretty sure I've mentioned before that I'm not a big fan of resolutions. (Okay, so I sort of HATE them. I'm pretty sure I've mentioned that.) I don't go in for the whole New Year's Resolutions game. Those resolutions are too far out there, their end date is beyond my ability to see them coming. It feels totally useless to me to make changes in January that are going to get me to a certain point by November.

I know, I know. I'm not rational. But that's how I feel about resolutions. I hate them.

Now, goals? Goals, I can get behind.

But they have to be just for ME. Group goals are for the birds! (Says the girl who may or may not still be suffering from PTSD related to group project assignments in High School Biology.)

I set completely irrational goals: By Thursday this week, I will be FINE!

And I set slightly more achievable skills: On Wednesday, I will put on real clothes and take a walk around the pool.

The good news: I am totally fine with adjusting said goals when I can't meet the objective.

Because on Wednesday, all I could manage was getting dressed. That, alone, winded me.

Well, that and opening a week's worth of mail. It had been piling up on my kitchen table since I went into the hospital and since the only things I like to pile up on my kitchen table are hand-dipped chocolates and fresh-cut flowers, I had Judy bring me the mail and I sat in my chair and opened it. And I did fairly well. For about ten minutes. (Insert laugh snarky laugh here. You're not laughing at me, kids. You're laughing with me. ... This body is ridiculous, and I know it!)

By the time I got to the bottom of the mail, I had a runny nose (I'm sorry to say that it was the exertion of opening multiple envelopes/packages... I'm so lame). I went to bed last night, thinking my nose was still runny because of the dust I'd breathed in while I was opening care packages from around the world (I kid you not: people mail me stuff from around the world. I'm pretty much the luckiest girl ever, in that way.) I woke up this morning, with a sore throat, itchy ear, right nostril so swollen I can't breath out of it, and....

So much for being FINE by Thursday.

It appears that I made myself sick, opening the mail. They weren't kidding when they said my immune system would be tanked!

But I did feel better, nausea and anxiety-wise, which was most of my initial "I will be FINE on Thursday" manifesto.

So, "ACHIEVEMENT UNLOCKED" on that one. Sort of.

My new Thursday goals are: Shower (check) wash hair while you're in there (check) get dressed (check) send two semi-important emails (check on one, but not on the other... I'm just too tired to write well, and this one's going to be sharing a part of my soul, in hopes to get some help on the wig-maker front) oh, and see if you can't get outside and take a walk around the pool (the jury's still out, but it's only 4:00, so it's likely to happen)

Fun new things that my body did against my will today:

My skin is sloughing off. It's vile. As in, I got out of the shower, and my entire face was white and peeley. WHAT THE CRAP?! Two hours later, I walked past the bathroom mirror and I have acne the likes of which this face hasn't seen since 1987. I'm sure it's just toxins coming to the surface of my body, but still. Ewh. I can't even...

I can't bend over - to say, water a plant, or tie a shoe - without my heart racing. And then it takes an hour or so of sitting still for my heart to calm back down

My bones are starting to hurt. Not all of them, but some of them.

I can hardly wait to go back to MD Anderson on Monday for my lab work and walk my happy little self up to the triage center on the third floor and see what they have to say about these new developments in my life.

The good news:

Food is still delicious. I don't really get hungry anymore, but when food is presented to me, I love the crap out of it. Such a blessing!

I have been awake all day today. (Always a win!)

I still love sitting still. ... Gosh, I'm so grateful (ALL THE TIME) that I am not a person who gets bored. I love that I can live in my head for hours on end. Sitting still in the quiet never gets old, and I'm so incredibly grateful for that.

Check back tomorrow (if you dare) to see if

A) I'm even more of a leper
B) I decided to set Friday goals
C) My right nostril has completely caved in on itself and I'm now struggling to breath through half a mangled nose

Two Days Later

I'm pleased to report that I've been actually AWAKE for this whole day. I'm still so gol' darn tired that I can't manage to do more than sit really still and breathe, but I've been awake. Which is more than I can say for the first two days home.

Monday, I was home around noon and woke up for meds every six hours. Other than that, Sleep City. Tuesday afternoon, I had an appointment with MD to get a follow-up shot (something about increasing the white blood cells). I was up long enough Tuesday morning to shower and wash my hair (I'm sorry to say, it's already changing). I got back into bed and slept until Jo came to taxi us to the doctor.

Had a brief scare at MD when my initiall resting heart rate was 120. Sat there for a while, while they watched my vitals.

Today, really, all things considered... has been good. I didnt get dressed until 3, when I was PLANNING on getting dressed by 11. On Monday, I'd given my body an ultimatum of being back to normal by Thursday. (I figured a week for a round of chemo should be sufficient.) Now, I'm still hoping for Thursday... but I've amended my "normal" on Thursday to "being strong enough to send two emails and walk outside".

The amount of sheer tiredness is... exhausting. I've honestly NEVER been this tired in my life. And I've been plenty tired. I'm burning a low-grade fever at all times, trying to push the poison out of my sad little body. I've somehow lost 10 pounds in a week, all the while, having literally GALLONS of fluid pushed.

I don't get hungry, but food still tastes good when I eat it, and I am grateful for that.

Luckily, no mouth sores so far.

I still have my hair, but plan to cut it in ponies - to preserve it for a wig.... still looking for that wig maker, so if anyone knows something, please feel free to chime in - and then we'll shave the head this weekend. Hair generally falls out between 2-3 weeks after chemo, but I have a friend who lost hers at 10 days. I'm quite confident we'll be able to get the hair bagged and tagged before it starts to fall out.

I am tired, but I'm grateful for all the medication that's made this as easy as it could be. I shudder to think what cancer patients had to go through twenty years ago. The pre-meds and the post-meds have saved me!

My current view

I'm home.

Halle-freakin-lujah!

I'm so incredibly grateful for medications that cover side effects. While there have been hours of misery, it certainly could have been worse.

I'm home now, with Doctor's orders to lie low and take all the anti-naseau and anti-anxiety meds that I can, So... I'm gonna do that now.

I'll check back in in a couple days when I've slept off the poison.

The last bag

Okay, so what?

It's the next to the last bag... but we believe is celebrating small victories here!

This is the next to the last bottle of Mesnex, which is what coats my liver, my blabber and my kidney. My last BRUTAL chemo ended around noon, so now we'rw just in coating phase.

As for me and my house, we're just grateful for Zophran and Phenegran, because every time the nausea kicks in, one of both of those drugs knock it right out!

I won't lie. This hasn't been a cake walk. While I am incredibly grateful for all the premeds can do, there have been moments of waking up and thinking, "Oooooooh... this is what i especting." The nausea has been frierce. The anxiety has been incredibly high. The tired is more of a "bone deep" exhaustion than I could have imagined.

But I'm alive. And I'm okay. And I should be home tomorrow. (Expect frewer posts the next few days. I've been told the side effects hit HARDCORE and take 28-72 hours to clear.)

Afternoon of Day 3

It's not pretty.

In fact, I'm just going to ask forgiveneness for typos here and now.

It's bad. The "little bit shaky" from yesterday has escalated straight to "this is exactly  what Parkinson's looks like on TV". I'm hitting my phone in an attempt to scroll. Words are in my head, but won't come out right."

Dizzy, Nasueas, but if iI still completely still, it gets better.

So, that's it for today.

2nd Morning

First things first... I SLEPT THROUGH THE NIGHT! (Except the 3-4 times the nurses had to wake me. But still, steady sleep.) I woke up at 8, reached for my phone, and... realized I had little control over my shaky little fingers. (You wouldn't believe the amount of time it's takenme to get this much out.) My verbal skills are also compromised.

Could be an early side effect of the chemo (neurological side effects are possible), could be a high dose of the steroids they're giving me to help with the infection of the lining od my bladder, which is another awesome side effect.

the upside of whatever this is... I'm tired enough to sleep. So; i'm gonna go domemoe of that.

Hospital Food

It's not all bad, kids.

I don't know how much longer I'll be able to eat citrus, but I'm telling you right now, I plan on finding that out the hard way. Esp when said citrus is GRILLED and served on a bed of lettuce with sliced strawberries, blueberries that are as bug as a nickel, grilled chicken, pinions (and saving the best for last), blue ccheese and a raspberry vinaigrette.

Since i had this salad for both lunch and dinner today, I feel like doing a double shout of gtratitude for all the pre-meds they IV'd me with before they started the chemo. While i know the mouth sores are coming, and that they'll stop this kind of shenanigan... IN ITS TRACKS... I'm just so grateful that I can still taste food, esp a medley of berries and one of my favorite cheeses.

12 hours in

I saw my beloved Dr. H yesterday. Turns out my heart looks good! (Surprises all the way around the table on that one. I am, after all, my Mother's daughter. Also, I would eat steak and bacon every day if I could. I am SO not a heart-healthy eater. .... Could someone please pass the butter?)

With the final blood work and the echo results showing that I have an irrationally healthy heart, I got shuttled over from MD Anderson to Banner Gateway to get checked i.

It was probably 5:00 before I had a room. Around 6:30, I noticed that the port area was looking a little peaked (by which I mean: peaks and valleys of angry red welts). I'd slathered myself with numbing cream, as per the instructions.  Hours after.'d received, and then covered the area with plastic wrap to keep it sterile (also per the instructions). 

Too FREAKING bad I'd forgotten that my body has a reaction to plastic-on-skin that is UNPARALLELED. As soon as Judy saw the rash, she was having flashbacks to trying to raise this little girl who'd get bandaids growing into her skin and other such dilemmas.

So, my sweet nurses had to wipe ALL the numbing cream off (not that it was working anyway. I'm pretty sure the reaction with the plastic made it defunct) and start up my port. Bless them. It took 3 qualified medical personal, one mother who was gently rubbing my hand in an effort to keep calm, and one incredibly anxious-and-in-pain patient roughly an hour to get that dang needle in, but it's stuck. And now I'm attached to a IV machine with the highest number of output tubes I have EVER seen.

For real. See that list? THAT is what they've run through me in the last 12 hours:

All those little boxes on the far left? That's inside of me now! ... Well, except for what I peed out. And I am here to tell you, there is A WHOLE LOT of peeing to be done when gallons of liquid are being pushed through your veins.

Which leads me to my next fun fact: Did you know that the toxins that are in chemo stay LIVE TOXINS as they travel through your body? I was told this morning that, for up to 48 hours after my last treatment, I need to treat my body fluids as toxins. Rubber gloves, the whole nine. (I may or may not have peed my pants a little last night and was just gonna was them out and let them dry and re-wear them today. ... And then the nurse figured out what I was doing, went and found some rubber gloves to put my pants in a sealed bag, watched me wash my own hands TWICE, and told me that I need to be REALLY careful with the fuilds - all of them - not to let anything touch my skin during chemo and for 48 hours after treatments start. Who knew?!

Other than the "poisoned pee" scare, I'm doing alright. They have me all kinds of pre-meds for nausea, before they started the hard drugs, and they appear to be working. I'm tired and my stomach's a little weird, but both of those things are normal for me, so I'm not complaning.

Word on the street is that I'll be here for a full five days. Four days of chemo, followed by a 24 hour infusion that I'm sure will be wildly helpful, even if no one's told me what it is yet. Visitors can come if you're a healthy adult. (Warning: If you havent had a flu shot this season, be prepared to wear a mask.) No flowers, because the pollen messes withthe air quality and I'm officially a cancer patient, living on the oncology ward. But you can send balloons. Or raspberry cream pies from Kneader's. ... Whatever floats your boat!

I'll try to check in at least once a day so you have current data. I have my phone, and so does Judy, if there's something you need to reach me for.