Thursday, September 25, 2014

Mask, schmask.

So every now and then, I'll get a private message on facebook or an e-mail from a friend, saying, "Now, how are you really doing???"

And I say, "Dude, the stuff I put on my blog?  That is how I'm really doing."  I try to be as transparent as possible.  I mean, sometimes I have to be careful about what I write so as to protect peoples' privacy and to prevent people from being mad at me, and sometimes I don't put in all of the nasty nitty gritty stuff, because really, does anyone want to read details about my gastrointestinal life? No.  So that stuff is omitted or kind of sidestepped.  But the rest is real, dudes.  It's real.

And how I'm really doing?  I'm fine.  Really.

(I think a lot of that has to do with my anti-depressant.  Looooove it....)

I mean, it's not fun, the chemo thing.  It's definitely not on my list of top 10 best times of my life [Oooh, I should write a blog post about thaaaat....that is a fun topic.....  wheels are spinning...].  In fact, I'd say the whole cancer experience is definitely on my list of top 10 worst times of my life, but dude, I've been through some hard stuff, guys.  And guess what?  Cancer is not even my number one worst thing that I've ever gone through.  True story.  If I was terminal, or if my cancer had spread to other parts of my body, it would shoot up there to number one.  But, as far as I am concerned (and my oncologist verified this, so I'm not warped here), I am in remission.  In the future, I can say, "I've been in remission since July 30, 2014," because that is when they took all the cancer out, and the CT scans thereafter were clear.  We're doing chemo to be safe, just in case there are little particles out there, but dude, for all intents and purposes, I am in remission.  So who am I to complain???

People sometimes ask, "What is going through chemo like?"  I thought I'd tell you what I myself have experienced so far, minus really gross stuff.  In the past, when I saw someone who had lost their hair and was wearing a hat or whatever, I thought, "Oh man.  They might have cancer.  They must be barfing all day long.  Their bodies must feel like they're burning."  And that might be true for a lot of people.  But I'll tell you what has been true for me.

Kay.  You go in for chemo, and you talk to the doctor for a little while about any new or worsening symptoms you're experiencing.  Then you go back to this big room that has very cozy, recliner-yet-still-not-fabric-because-of-germs chairs.  So you ask for some blankets (they wash them after every use - germs are a huge deal in the cancer business), and they give you a pillow, and they access your port.

My port is by my right collarbone.  You can take blood from it, you can put an IV in it, you can put your chemo meds in's cool.  It's about the size of a dime and it sits underneath the skin.  Ports are so great to have, because then you don't have to keep getting poked for IV's, and also you don't experience the stinging that a lot of people feel when the chemo goes into your body.  So basically, they poke this plastic butterfly thing with a needle on the end into your port (yes, that part hurts, but only like a really thick shot or something like that), put this tube on the tail of the butterfly, and then they can hook up IV bags or squirt syringes or whatever into this tube.  When they're done with each different kind of IV, they flush your port for a minute, and you get this immediate taste of metal in your mouth.

Which I kind of like.

It's weird - I've always really loved the taste of metal.  I used to suck on the metal chairs in church when I was really little.  If I'm doing paperwork and need paperclips and have to hold one kind of at the edge of my mouth while I organize the papers or whatever, I'm like, "Yum."  For realsies.  The best part of milkshakes, to me, is licking the spoon for an extended period of time after each bite. When I tell people this, they're like, "Sounds like Pica."  I'm like, "Whatevs.  I'll address that later. Right now I have bigger fish to fry."  AmIright?

Kay, so first, they give me and anti-nausea thing.  I think it's squirted in through a couple of vials. Then they give me a white blood cell upper.  I think that's through an IV bag.  I feel like that's all at first, but I may be wrong.  I don't really care.  I should, but I don't.  That's something that happens when you go through chemo.  You don't give a rat's arse about anything.  We'll go over this more later.

Then they give you a popsicle to suck on during the first chemo in my cocktail - The Red Dragon.  It's literally red.  And it makes you pee red.  The popsicle helps you not to get immediate mouth sores.  If you keep your mouth nice and cold, you get to skip the mouth sores until two weeks after chemo.  We'll get to that.  The Red Dragon is in two really big vials that the nurse squirts slowly into my port tube.  It doesn't hurt.  I've heard it hurts when you get it through your IV in your arm.  That's why I love my port.  Dear, dear Portia.  She has worked hard for me.

The Red Dragon maybe takes a half an hour or so.  Then it's time for Cyto-something.  Again, I don't care to go look it up.  Plus it hurts my hip to walk today.  So we're not going upstairs to check.  Cyto-something and Taxotere (hey look!  I remembered something!) are the two remaining drugs in my cocktail, and they are both clear and administered via drip bag.  Each one takes an hour.  I don't have to do anything special during Cyto-something, but during Taxotere, I have to keep my fingertips on an ice pack.  It prevents numbness and tingling.  These nurses are way on top of things.  I love them.

So by the time I'm done, it's been about five hours.  It's a long haul.  My poor friend Kathleen came with me this last time, and I kept saying, "I'm so sorry this takes so long!  You have so many things you could be doing!"  But she was like, "No, I'm good!  I have nothing to do today!  I want to be here!"  She is such a doll.  She had to borrow my sunglasses when we headed up.  She is such a little person that my huge sunglasses on her teeny, delicately-featured face made me chuckle:
I have large features.  The large sunglasses are good for me.  If I wore small ones, you'd see way too much of my chubby face. :)

The first time I did chemo, I brought crossword puzzles, which I didn't do.  I slept for an hour of it. And I tried on hats.  I brought a book, which I didn't read.  I brought card games for my mom and me, which I didn't feel like playing.  But Kathleen came with a plan.  She is so adorable.  She brought these Paper Pumpkin card kits for us to make!  It made the time fly!

So my goal for next time is to make my own card kits - everything pre-cut, etc., all in a compact little box - and actually get stuff done.  I might put together some ballet barre exercises and write them down.  Because you feel just fine during the process.  It's just the after-effects that can get... fun.  (And by "fun," I mean, "not fun.")

So the rest of that day and that evening, you get flu-like aches.  Nothing too awful.

The day after chemo, you have to go get a neulasta shot.  It also bumps up your white blood cell count.  The first time, it left a really nasty bruise that lasted for three weeks!  Just on my arm.  But people were like, "WHAT HAPPENED TO YOU?"  It was that ugly.  This time, it didn't leave a bruise.  Yesssss.

The next four days are the killer.  My oncologist lightly calls them "pajama days."  More like DAYS FROM HELL.  And hi, every day is pajama day in my life.  Even before chemo.  Pajamas until I have to go out into public.  That is how I roll.  Skinny jeans at home?  Please.  Way too uncomfortable.  And they fall off my non-butt.  Don't think I'm bragging about my lack of a butt.  I wish I had a butt so that jeans would stay on me.  And then I could sing, "I'm all about that bass, about that bass, no treble..." and get away with it.  I'm missing this really important part of my life - being able to sing that song and own it!!  At least I can sing that part that says, "Every inch of you is perfect from the bottom to the top..." And a belt to hold up sagging britches is out of the question, because it hurts my huge belly.  It's been an issue for a long time.

Kay, so during those four days, your bones really hurt because of the neulasta stuff.  You know where it gets those extra white blood cells to fight off infections you might get?  From your bone marrow. It's sucking the marrow out of my bones, dude.  And that hurts.  And my stomach hurts all the time - not from gastrointestinal distress, but because of the lining.  You see, chemo meds attack fast-growing cells.  So all of the linings of everything are raw.  The lining of your intestines.  Your stomach.  Your esophagus.  Your mouth.  Um, other openings that come out of your body.  (We'll leave it at that.)  I take this stuff that coats the lining of my stomach and intestines before every meal so that the food doesn't irritate what is certainly a raw area.  Sometimes it works, sometimes it doesn't.  Mainly, I live with a heating pad on my stomach for those four days.

And emotionally, I just...sit.  I'm like a piece of furniture.  Or a dead dog taking up space on a piece of furniture.  I think, "I should read!....  Naw....I should make cards!.....Naw.....I should watch TV!....Naw....I should write thank-you notes!  Naw...."  You don't want to do ANYTHING.  You just...lie there.  It reminds me of what it must have been like to be sick during Jane Austen's era.  Maybe those sick girls read a lot; maybe because they didn't have the I-don't-give-a-rat's-arse-cocktail, they actually cared about their correspondence and reading and all of that.  In between being bled and all those weird shenanigans doctors did then.

Here's the butt-kicker - even though your bones hurt SO BADLY, you can't take anything for the pain.  Anything with Tylenol will "mask a fever."  You have to take your temperature the first week after chemo, at least twice a day.  If you hit above 100.5, you have to go to the doctor and get your blood tested.  If your blood shows that your platelet count is too low, you get to go to l'hopital and be bored for two days and have incompetent people poke and prod your port because they don't know what they're doing.  And you get male nurses who are like, "Are you ready to shower?"  And you're like, "Um.....  I can do that myself.  But thanks."  I'm trying not to be sexist about having male nurses. I mean, female nurses probably help male patients shower all the time, right?  It was just really weird for me!!  And I felt well enough to do that stuff by myself.  So it was fine.  I don't know what my problem is.  I've had a male OBGYNs...I don't know.  Whatever.

So no pain pills, even though you're in a ton of pain.  My sis was like, "Have them prescribe you something without Tylenol, like Oxycontin!"  I was like, "Whoa, that's hard stuff..."  I honestly don't know if they would do such a thing, but I'm willing to ask.

So, yeah, the definite goal in the first week is to avoid going to the hospital. Because I hate it.  And the food is horrible.  And if you are admitted for neutropenia (low white blood cell count) like I was three weeks ago, you can't eat anything fresh. No fresh fruit or veggies.  Just processed CRAP.  Everyone who came to see me had to wear masks. If anyone had brought fresh flowers, I couldn't have had them in my room.  It's cray.   As my aunt Kennan and I chanted together this weekend, "No l'hopital!  No l'hopital!!"  My mom has been faithful about taking my temperature, and I have been a brat about it.  If it's a little high, I'll be like, "Dude, I've been lying with a heating pad on my stomach.  Of course it's going to be high!"  Or I'll hurry and drink a cold drink, and then it will be, like, 98 degrees, and Mom will give me this sardonic, raising-one-eyebrow look.  The thermometer is my enemy, you guys.  It sent me to the hospital three weeks ago.  I ain't going back to that place.  No way.  No how.

So the week after chemo is when you have to be really, really careful about germs.  I mean, I have to be careful all the time, but that first week is critical.  You can't go anywhere with crowds.  You can't have visitors without wearing a stupid face mask.  You can't go to the store or anything without a stupid face mask.  Those  masks are sooo uncomfortable.  They go up into my eyeballs.  I try to mold them to my nose to keep them down,'s just not working out for me.  My aunt brought funny moustache and lip stickers to put on my face masks when she and my uncle came to visit this weekend:

And BTDubs, I only wore the mask for the first night.  I hate those things.  I was like, "Dude, honestly.  I'm not in a classroom of kids.  My aunt and uncle aren't sick right now.  We're good." Maybe I'll regret that decision later; we'll see in about an hour when they test my blood.

Last night, my hip hurt soooo badly.  Sooo badly.  I was lying in bed, crying, and I was like, You know what?  I don't give a rat's arse that this will "mask my fever."  It's been three hours and I'm bawling from my hip hurting, and I want to sleep, gosh dang it!  So I popped one of my hydrocodones (which I'm allowed to start taking after my blood test is okay today, but technically it was a no-no to take it last night).  It buzzed me, so I didn't sleep well, but boy howdy, was the pain ever gone.  Thank you, hydros.  I love you.

The pain is back today, but after my blood test (please don't send me to the hospital, blood test, mmkay?  Puh-puh-pleeeease?), then I'm free to do any kind of Tylenol-based stuff I want.  Which will be the hydros.  Obvi.

So after the fifth day, you start to feel a little like a normal person.  You can do stuff for like maybe a couple of hours, but nothing very active, and then you usually need a nap.  If I fold clothes, I'm like, "Whoa, I need a nap."  Or if I cook something to go along with my mom's dinners, I'm done for.  Making Micah do his homework does me in, as well.  And also on the sixth day, you actually really want to do stuff.  You want to read.  Or watch TV.  Or make cards.  Or blog.  You feel motivated again.  And that is a fantastic feeling.

For the next week or so, you have some pretty intense gastrointestinal stuff go on.  And your throat gets sore for a couple of days, then feels better.  Then your mouth feels like you ate too much Cap'n Crunch for a couple of days.  Then it feels better.  And then your tongue feels like you burnt it.  And then you get little sores on the sides of your mouth.  It's weird.  It's a weird progression, kind of stemming from the stomach pain and making its way out of your body slowly.

By about day 12, you sometimes feel good enough to exercise (in my case, teach dance).  You can go without those naps that you so desperately needed before.  For me, I basically felt crappy for a week and a half, and then okay for a week and a half.  And it seems to be going that same route for me with this second round.

I haven't lost any weight, which is what we want with chemo.  Weight loss is not desired during chemo.  People who lose weight do worse with the symptoms.  I was really hoping I'd happen to lose some, because during that first week, everything tastes weird and gross.  But the last two weeks, your taste buds return and you're wolfing down everything in sight!  I actually gained 3 at my last appointment.  I think that might be because I got boobs during that time.  But who knows.  And who cares?  Not me.

My hair continues to thin.  It's really quite interesting to watch it take place.  I'm not distressed about it.  I examine it and go, "Hmmm..."

It's coming out in patches, as well as the Male Pattern Baldness thing.  It's coming out over my ears...My scalp is more sensitive than it was after I first shaved it.  When I lie down on a pillow, I can feel the brittle hairs snap off.  When I dry my head with a towel, a shower of snapped-off hairs fall on my shoulders.  It hasn't grown much since I re-shaved.  I initially had my shaving party, remember, and a week later, my hairs were enormously tall!  I couldn't have that.  So I re-shaved.  I don't think I'll have to do that again.  They've stopped growing.   My eyebrows are getting thinner, and my eyelashes are, too.  Which is fine.  I have eyeliner.  We're good.  Hair grows back.  This is part of the biz.  I've never been really very vain, so that is serving me well right now.

I obviously have a lot of time to ponder deep stuff lately, and I feel that Heavenly Father did a really good job of preparing me for this time in my life.  I was a big-time ugly duckling as a tween, and I think that helped me to learn that looks aren't everything.  That when your looks are taken away, it doesn't really matter.  What matters is your heart.  Your spunk.  Your personality.

I begged Him to take away how horrifically sick I felt with my pregnancies.  I mean, you have no idea how awful those were.  Nine month torture-fests.  For a combined THREE YEARS of my life.  I often thought, "This is what it must feel like to have cancer."  And it DOES!  At least for me.  The nausea in the mornings...the constant pain in the stomach, the bones that that tastes really awful...  I went through all this!  I am an old pro!  I barfed the other morning, and it was no biggie. I've barfed probably thousands of times with my pregnancies.  So I feel that Heavenly Father chose not to take away the illness I felt with my pregnancies, because he knew it would be a good preparation for me.  I truly can see that.  He knows all.  And I need to stop whining to him about stuff.  He's the grand designer.

I feel that He guided me to decide to apply for dance-teaching jobs way last spring so that I could get this amazing job that I love and that gives me so much joy and hope during all of this crap.  When you let Him take the helm, he really does take you to where you need to go.  And he prepares you for hard stuff by giving you semi-hard stuff first.  Or super-duper hard stuff first.  Or both. :)

Look, I'm never going to be one of those people that's like, "I pray for trials to come to me to make me a better person."  I will continue to hold my stubborn "If you give them to me, fine.  But I won't be happy about it" stance.  Because who wants to suffer?  Nobody.  Nobody.  But I do like looking back and watching the Lord guide my life.  There are some things I don't know about yet - why certain things happened the way they did or why I had to go through other certain things.  But I'll know someday.  He and I will have a talk and I can be like, "What about that one time that....?" and He can tell me about it.

What I do know is that His atonement is not just about him paying for our sins.  He also experienced everything I'm going through now.  And because He knows exactly how I feel, he has tailor-made these incredible blessings for me.  I feel like he's pouring this enormous bucket of blessings on me.  I cannot get over it.  If I tried to write them all down, it would take a year.  The blessings make the hard stuff feel...workable.  Do-able.  The blessings make my load feel lighter.  You just have to open your eyes and look around to see the blessings.  Sometimes you can't see them.  But if you pay close attention, you'll see them all around you when you're going through rough stuff.  I say quick thank-you prayers in my head to Him when they happen, in case my chemo brain kicks in at night and I can't remember them during nightly prayers.  (Chemo brain is real.  You just...get really forgetful.) Overall, I feel very grateful.  I'm in remission, guys!  I feel like I have the flu every three weeks, but only until Christmas!  And then I'll feel fantastic!  That's nothin'.

So honestly, I am good.  Really.


Mindy H. said...

Yea for remission! I am so glad you are "fine" and I hope you are feeling all of the prayers that are being sent skyward for you and your family.

And seriously... I am going to try to hunt down Sherri Dew's email address because she needs to read your blog and then sign you to a big fat Deseret Book deal.

Heidi said...

I have loved reading your blog this year! You have helped me so much! We (my hubs and I) have the 16-17 year olds and let's just say I am way out of my comfort zone...WAYYY out. It hasn't gotten better and the kids are no help. THIS blog is helpful. THIS has been a blessing! I hope that you continue to get blessings as you get your treatments and recover from this havoc running around your body. I was shocked to log on one day and read all of this that's going on with you. You will be in my thoughts and prayers. Thank you for posting your ideas here. You are amazing!

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