Taste Treats

     I was thinking how people (and I am definitely included in "people" too) always think bad things happen to someone else.  Losing a job, death of a loved one, car accident, house catches fire, flood, illness, getting your wallet stolen, and so on.  And I was thinking how I am still sometimes flirting with the idea that the doctors have made a mistake, even though I know they wouldn't be giving me all these costly drugs in error, right? (Hate to be all dollars and cents about it, but you know it's true.)  All I am is just someone else's "someone else."  The wheel spins and it has to come to rest at some fixed point--it's just my turn this time.  Because I have to say, I've had a really stellar run up until now, and I'm fully prepared to continue a just-as-stellar life path afterward.   I can't complain.  I'm fortunate all the way around.   And this isn't me just being a Pollyanna about things.  A dear friend told me not to feel obligated to be the poster child for Happy Cancer, and I promise that's not what I'm doing. 
     So about 6 days after chemo this time the smell/taste changes started to happen.  Once again my amazing denial power had decided that, if I hadn't experienced it yet, it was going to skip me this time around.  So little smells that aren't on their own offensive just get to me--and an offensive smell?  Well, let's just say that if I were to walk by an Abercrombie store at the mall, there would be a "clean up on aisle 5" for sure!
     And the taste of certain things loses enough of itself to render it unpalatable.  My coffee, for example.  Sweet things (took a bite of my sister's coveted Christmas toffee--which should be a controlled substance because if you ever taste it and you are not in her inner distribution circle, you will become unravelled like a crack addict trying to get back to it again--and it just tasted "meh" when a few days ago it was a heavenly morsel), and of course, anything bland is just more bland.  Strong flavors register, or something very salty, but definitely the savory flavors translate better through Chemo Tongue than sweet.  Which is strange for me, the biggest sweet tooth of them all!
     Nausea is harder to keep a lid on as well this time.  I am taking my meds on schedule and it just seems that things are getting frayed at least an hour or two prior to the next dose, which didn't happen last time.  But no full-blown...well, you know.
     I am feeling much more fatigued for a longer stretch now than I was the last time.  It's a little deceptive to be looking at a day that includes on its earth-shattering agenda things like going to the post office, washing a load of towels, and having a phone conversation, and then I feel like I'm toast by the end.  Not a marathon runner in my past life, but I'm definitely used to being able to handle more on my plate than that.  
     This is where I think my power of positive thinking gets taxed more than when I am sitting in the chair getting chemo--it's staying positive while you are feeling, and seeing evidence of being, debilitated.  And then I have to think of what an easy time of it this is compared to someone facing this feeling as a constant; anyone with a chronic illness has to muster up this positivity all the time.  I am only being required to maintain what is, in the scheme of things, a series of short bursts of that positivity as far as how to cope with feeling physically diminished by an illness.  I am blown away by what kind of fortitude it takes on the part of someone who has to buckle up for a ride that really doesn't have an end point to it--it's easy to wrap your brain around a short-term situation, no matter how unpleasant.  The tough job is to hunker down and continue to make your journey (and then go for those awesome points again and again and enjoy your journey) when you know the road is just that unpleasant and may in fact get worse, but never better, for you.  Anyone I know can do what I'm doing right now--but doing the day-after-day forever plan, now that takes some guts right there.  
     Many thanks to all who are keeping my family (and me) fed --your meals are so appreciated, you can't even know!  My kids will never want to go back to my cooking on a consistent basis after all this--it's a beautiful thing and such a tremendous help, you just have no idea.  Thank you thank you!
     And hey:  Happy Holidays, Merry Christmas, Joyful Everything

(Post-chemo Jams:  "Sorrow" by Bad Religion,"Love You Till The End" by The Pogues, "San Francisco" by The Mowglis,  "Lose Yourself" by Eminem, and this one introduced to me by my daughter:  "Yorktown" from the musical Hamilton ["Hercules Mulligan, I need no introduction, When you knock me down I get the f@#& back up again."].)

Beginning to Feel A Lot Like Christmas

Happy Port

     I am feeling like a mostly normal person--just tired, kinda draggy, but my brain is all here (hey, no jokes about THAT, all right).  This is thankfully turning out to be an easier recovery for me, I think for two reasons:  I have had Ambien to help me get some sleep, so I am not trying to function under such extreme sleep deprivation.  Also, because I was only on steroids for 5 days, as opposed to the entire week leading up to chemo, then having the regular dose of IV steroids with my chemo, and then having the emergency infusion of MORE steroids for the allergic reaction, and THEN the 5 days after chemo, well, I have to think that ratcheting back the level of steroids in my body has helped overall with the jittery feelings, the agitation, and the pacing.  There was still some jumpy legs, some grrrrr...snap episodes, but not the complete hijacking of my brain with drugs.  I am a little scattered, and seem to have more than the usual amount of trouble remembering why I walked into a room or what I was just about to do, but I'm still feeling like me.  So good news on all fronts there.
     Let's run through the checklist:
Dreams:  Still incredibly vivid and complex, but thankfully Mr. Cruise took a pass this time.  I would have had no patience for a Dreamland repeat on that one. 
Smell-O-Vision:  Not so far.
Cat Avoidance:  He's been cuddling up, so I must not have chemo stench.
Nausea:  Yes, more than last time, but still held in check (meaning, no upchuck); gotta stay strictly on that med schedule or it creeps right up on  you.
Mouth sores:  Just starting as I type.
Bone aches:  Oh Lordy, yes!  Ugh!  Terrible!  Hate 'em!  Those will get you to wandering even without the steroids, trying to find a comfortable position to be in...stand, sit, lay down, wander around...
Fatigue:  Yes, no way around that one.  Worse, because I don't have steroids keeping me all hopped up.
Hair falling out:  Um, well, I don't think I'm going to have to shave my legs or under my arms for a while...nice benefit, I guess.  Eyebrows and eyelashes still hanging in there, but I see things getting a wee bit patchy in EyebrowLand.
     Overall, I will take this recovery over the Steroid Nightmare any day of the week.  Infinitely preferable to feel like a human, albeit a tired one, than like a psychotic nightmare vision.

R2D2 Porkchop Assist

     Got my cool time-release Neulasta patch (or as my adorable nephew called it, my Star Wars medicine, because the patch is in the shape of R2D2) on my stomach this time--was a dork and wore long sleeves to chemo, so couldn't do the arm.  No, I am not going to show y'all a picture of R2D2 on my stomach.  I mean, I love you too much to do that to you.  No six-pack going on here, folks.  On my stomach it felt like a more robust rubber band snap when the needle went it, but it didn't hurt.  And I actually slept through the entire infusion when it was time, unaware of what was going on.  But anyway,  I wanted to show you how the patch looks when I take it off--you can see the tiny blue catheter at the top that gets poked in to infuse the medicine after the little needle stick. 
     This is just a random aside that I want to share:  In the vast array of snacks and beverages available in the Drug Den of Chemo, there are Cheetos.  I love Cheetos.  Crunchy Cheetos, original flavor, to be precise.  They are a guilty pleasure of mine.  I  know they are not healthy.  I eat them sparingly, because I have a little problem with how much I love them.  But it seems ironic to me that Cheetos are deemed worthy of being part of the chemo snack selection.  I guess making someone feel comforted while being very carefully poisoned is more important than a moment of healthy snacking.  But I just love me some Cheetos!  You GO, you awesome Chemo Den Snack Replenisher Person!  ;-P
     So I cleared up with the oncologist several questions I had--remember those irrational fears I mentioned?  Well, one thing I was worried about was the location of the tumor--was it inside my lung or adjacent to my lung and just shoving the lung out of the way on the scans?  The reason I wanted to clear that up is that I am supposed to use a CPAP machine at night for my sleep apnea.  And I haven't been wearing it since my cancer diagnosis.  I have apnea that can make me stop breathing for short periods umpteen times an hour, but for at least 90 seconds at a stretch once or twice an hour. Not wearing it can make me feel very fatigued, and research also shows that untreated apnea in people can result in them developing Alzheimer's at least 10 years earlier than their CPAP-wearing counterparts.  So all good reasons to strap on the Top Gun mask (yes, sometimes my hubs calls me Maverick--maybe THAT is the Tom Cruise link)!  But my emotional brain was somehow fixated on the idea that if the tumor developed inside my lung it was because of the CPAP machine.  Yes, it's ridiculous.  I know that.  My rational brain is fully aware that this is just a way of trying to answer that "why?" that will never be answered.  But because the oncologist confirmed that this tumor is growing from lymph nodes and just shoving and squishing its way into lung territory, and also because she discussed the importance of keeping myself oxygenated, well, that took care of that fear.
     So that left me with my one other irrational fear--again the attempt of my emotional brain to find some reason to explain this cancer.  I became fearful that because I wear a Fitbit (those little electronic activity trackers that synch wirelessly to your computer and tell you what a sloth you are during your day, I mean encourage you by making you move more, yeah, that's what it does) clipped on the same side of my chest that the tumor developed that...um...I started to think of all those stories of people developing brain tumors on the same side of their head where they press their cell phones to their ears, and I just kind of went from there.  My oncologist gently talked me off the ledge with that...well, sort of.  I don't know if my rational brain is completely in control of that one fear just yet.  But...I'll figure something out eventually.  Even though my online patient portal with the cancer center chided me about my BMI (are you effing serious?  Okay, I totally get the correlation between BMI and cancer risk, but helloooo:  I'm on CHEMO--and you put CHEETOS in the CHEMO ROOM--step OFF, why don't you?!?), I don't think I'm worrying as much right this very second about my activity tracker and my BMI  as I am about getting rid of this piece of shit tumor in my chest, thank you very much. Hand me a bag of Cheetos. The End.
   
   

Chemo Bag Reveal coming later--you will be so jealous and want to carry around your own once you see inside.

(Chemo Jams that resonated for Round 2--a little poppy, little funky, little old school--long list 'cuz it was a long day in the chair, and you can tell I was just listening in alpha order, no shuffle:  Hare Krishna by Thievery Corporation, Grenade by  Bruno Mars [yeah, go get my cancer, Bruno, get it for me!], Feelin' Alright by Joe Cocker [yep, Dad, for you], Fitzpleasure by Alt-J, Back in Black by AC/DC, Alive by Pearl Jam, Everybody Hurts by R.E.M., GFY [said straight to cancer, btw] by Shaggy, Gimme Shelter by The Rolling Stones [with a shout out to the legendary Merry Clayton], Flood by Jars of  Clay, and my mom's request to put on my Chemo Jams, Fight Song by Rachel Platten--thank you, Mama!)

Honeymoon Period

     Great news for me--I managed to get the entire  Porkchop finished yesterday in one go--no allergic reactions, no stopping, I was out in less than 7 hours!  Whoo hoo!  When I got home, there was a little episode of chemo saying, "Hey, Ms. Cocky, we're going to knock you on your ass for a little bit here to let you know that you aren't the boss!"  So I had this instantaneous nauseated, hot flash, breaking out in sweat, but being cold and clammy and feeling like I was going to pass out kinda fun going on.  But off to bed for maybe a half an hour, I think, and then I was okay.
     Slept well last night, like the first time, and feeling good but just a little tired today, like I did on Thanksgiving Day.  So I'm crossing my fingers that this will be the honeymoon period like it was last time.  After that--who knows!  I'm going to be optimistic that, with the prescription for sleep-aid from the doctor (well hellooooo Ambien), I will perhaps be able to manage the sleep issues that kept me up all night walking like last time.  Even if it can knock my legs out from under me for a few hours each night, that will be all to the good. 
     Love my chemo nurse, Wendy (or as I call her, Wendy Wonder Woman.  Yes, to her face.)--she rocks the house.  She is on it, full of good info, attentive, and friendly.  Couldn't ask for more.  Had a group chat with other chemo patients about how much we love our ports (everyone felt the same way at first--this is so icky, oooh, this is awesome!) and I feel bad for all the other people receiving chemo who don't have one.  Got my blood work done through the port day before yesterday--easy breezy!  (Little kiss to my port--mwah!)
     My bone marrow biopsy shows there is no cancer inside my bones at this time--YES!!!
     Unfortunately, that doesn't give me the information I was hoping for regarding if I have to complete fewer than 6 rounds of chemo or do more than 6 rounds.  The doctor is currently planning to do a PET scan sometime after the third round of chemo (which is already scheduled for January 7--Happy 2016!), and what she's looking for is not so much the amount of shrinkage of the tumor (which anyone who has spoken with me can tell it must be shrinking because my voice is sounding better, and I can tell because I don't get out of breath merely having a conversation with someone), but what the activity of the tumor is--is this still a mostly "hot" tumor, or is there a large amount of scar tissue where there used to be malignant cancer tissue? 
     So we won't know until some unspecified time after January 7... but I'm good with that.  I can feel improvements in my health so, at this point, it's good enough for me!  Would I love fewer chemo treatments--of course!  But if I end up having more than 6, well, I'll deal with it.  No choice, right? 
     When I come back to the land of the more functional, I promise to give you highlights of Chemo Detox Week, whether you want them or not.  And I'll show you what I tote in my Chemo Bag, for those who are curious.  I just don't think I want to be jitterbugging on the keyboard this time around, because it made me feel really inept and also made me want to throw my keyboard across the room (a feeling I have often which has nothing to do with chemo, mind you--just a result of my technological deficiencies).  Big hugs, kisses, and endless thank yous to everyone! xoxo

Round 2 Tomorrow

     I'm going to guess that the blood work I had done yesterday showed all the right numbers in all the right places to make Round 2 for chemo a go tomorrow--and I'm going to assume that because the cancer center not only left a message confirming my appointment with the oncologist tomorrow, but also left a separate message confirming how many Benjamins we will need to lay down for treatment tomorrow.  As a friend said:  Wasn't that nice of them?  Indeed.  
     Loved having the port for the blood work--if the insurance will cover going to the hospital to have an RN do it, I will do it that way every single time.  It's a beautiful thing.
     I have my list of questions for my oncologist--good questions and ridiculous questions related to irrational fears that I have not yet expressed here, but will be happy to once the doctor bolsters my rational brain with her expertise.
     I am prepared for being a sub-par human for the next week, hoping like mad to be functional for Christmas Day.  Hopefully this will be either similar to the last time, or better than the last time, but not worse than it was before!  That being said, I can't do anything about the outcome but deal with it, right?  Gotta go through it to get to the end of it!
     So if I'm out of commission for a week--nothing to be fretful about.  I'm just back to the business of detoxing from the chemical stew.  If you'd like, you can send good juju that the crazy dreams DON'T include Tom Cruise, cooperative or otherwise.  I don't mind guest appearances by other celebrities, preferably those who are good looking and prepared to do my bidding, whether it be adoring me or mopping my floors in a skimpy outfit in my dream life.  Either is acceptable, and the floor mopping might be slightly more appealing than the other. I'm just sayin'.  There are priorities, even in Slumber Land.
     When I'm back among those who have control of their brains, I'll be happy to give a shout out...share the best chemo jams of Round 2...let you all know I'm still here and kicking booty (maybe weakly at first, but ever stronger as the days post-chemo go forward).
     Thanks to everyone for everything--delicious meals, swag hats, coloring books for chemo, encouraging words, positive thoughts, prayers, cards, hugs, sassy anti-cancer slogans, jokes, walks for my dear doggie, and lots and lots of laughter.  I'm not doing this by myself--I'm part of a pretty darn big team.  And I think we are such a stellar team that we're going to win Cancer Superbowl Rings this year.  Fistbump-and-blow-it-up!! 
     

Going, Going, Gone

     All right, I'm going to want to know who won the When Is Andrea Going to Lose Her Hair pool?  I know I didn't win it. What date did I guess, you ask?  Well, I have a little secret.  Come closer because I'm going to whisper:  Despite all the bravado on my part, in my heart of hearts, I really, truly, didn't believe I was going to lose ALL my hair.  Like every little last strand.  I really really didn't.  Thought the Red Devil was going to give me a pass on that. 
     That's some hardcore denial, baby.  My mental powers of spin are astonishing, even to me!  Even as I was ordering various hat/headwrap dealios for the eventuality, I didn't think it was going to happen.  Even as I was pulling it out in handfuls.  All day long.  Silly, silly girl.

Going...

  I was totally psyched about my new short 'do!  I got such supportive, enthusiastic feedback from friends and family, and I still looked like "me" even with the super short hair, and I was having a preview of what I'm going to look like when my hair grows back...all positives.

     Then...dun dun DUN...zombie patches hit!  I think I internalized that because cutting my hair so short was such a drastic move on my part, my hair would be done doing whatever it was doing because I already did something drastic. So my hair didn't have to do anything more drastic.  Again, powers of denial in action.  

     Hair all over the pillowcase in the morning.  Anytime I touched my hair, more and more came out (yes, the "so don't touch your hair" advice did occur to me).  I wanted my hubs to see the short 'do in person when he got back from an out-of-town trip, and I wanted my mom to see the new 'do in person when she flew in on Saturday afternoon, so I just trusted that enormous quantity of hair product the stylist used would act like glue and keep my hair stuck on until they arrived.

     

Packed to go somewhere?

Nice bags under those eyes! Sheesh!

    

As soon as I could check those two boxes of Mom and John, I washed my hair.  I couldn't get a really good picture of the bald patch that showed up on the very top of my head when everything swirled down the drain, but I can give you some idea of how Zombie Head was shaping up.  Not pretty.  Mange, anyone?

Going...
     Clearly, the above look was going to be unacceptable.  UNACCEPTABLE!  So I made the decision to go for the Boot Camp Buzz Cut.  We made it a family affair--we all headed down to the barber who normally cuts my hubby's and son's hair, and we had a great time (well at least I did) because we all were laughing and joking through the entire process.  No tears, no sadness, no "isn't this terrible that she has cancer and her hair is falling out."  Our family approach:  It just means that the drugs are doing their job!  How can that not be a happy thing?  And once the barber finished with my head, my hubby and my son stepped up and did the very same thing--now THAT was cool!  I have the best family!
     So here is the buzzy hairdo:

      All I can say about this is:  WOW, it's COLD!! I vastly underestimated the amount of insulation that little sassy cut was still giving me!  Walking out of the barbershop, the "cool breeze" was FREEZING!!  Glad I brought a hat! (Proactive hat purchasing--I highly recommend it!  Because when that hair starts going, well, you don't want to be doing desperation shopping at that point.  You want to have some hats you like already in place.)
     And then back at my house--wow, is my house drafty or what?!?  Who knew?  (Of course, my kids always tell me it's cold in the house--I regret all my scoffing responses.)  I have had to wear a beanie to sleep, my head is so cold!!  

Gone

       So that was all well and good.  I think going to the sassy  hairdo before going to the buzz cut was a good move for me psychologically.  It made the change not-so-drastic to go from pixie to buzzy.  I think I might have had a rough time going from the uber volume of hair that I had straight to a buzz cut.  So aside from being colder and wearing a hat indoors (although, my coziest hat was ruled by my daughter to be unacceptable for wearing out in public because, in her opinion:  It's such a CANCER hat!  She is trying to keep me focused on being fashionable...a losing proposition, I think, but I appreciate her efforts), I didn't feel so much different than I did with the cutie hairdo.  
     Except NOW the ever-increasing bald spots looked really stark in comparison to my darker head stubble.  Blech.  Looks like illness.  Okay, I know that a woman with a bald head usually does broadcast illness to an onlooker, but the patchy effect looks like contagious illness--and yes, for whatever reason that distinction matters to me.
    

    So I decided it was time to cut to the chase.  I asked John to take as much off as he possibly could.  He tried the Norelco, which turned out to be not quite up to the task of tackling the hair that still wasn't ready to fall out.  He had to break out the razor and shave it--still a daunting task, because my hair is stubborn and tenacious.  If it wants out, it will jump out.  But if it's not quite ready, it REALLY doesn't want to go!  But John did a fabulous job battling with my follicles, and now I think we can say that I'm bald. Doesn't matter if I have five o'clock shadow on my head, I think I qualify as being bald. 

Benefits:  Save money on haircare products, use less water in shower because it won't take as long, no bad hair days, can roll down the window in the car and not have hair blowing in my mouth, more room in the bathroom drawers without all the clips and scrunchies and whatnot, no hairnet needed if I go into food service employment, no one can gain an advantage over me in a fight by grabbing me by the hair...um...help me out here.

Drawbacks:  Uh, I'm bald.  Duh! 
     It's interesting because a friend asked me if chemo was as bad as I thought it would be...hard to answer, because it was just really bad in a different way than I was anticipating.  But I was worrying that losing my hair was going to be worse than I was fearing. I was feeling preemptively embarrassed about being gutted by losing my hair.  I mean, it's only hair.  It's just stupid hair.  It will grow back.  I know that.  To fret about it made me feel vain and shallow.  Intellectually I am fully on board with the irrelevancy of hair in the scheme of what is at stake here.  But emotionally...dude...I'm a chick with long hair. I mean, I WAS a chick with long hair (aaaaauuughh, past tense now, aaaaaahhhh).  Long hair gals, back me up on this:  Hair is a Big. Flippin'. Deal.  
     My hair has been part of my identity for so long.  And honestly, my hair is the only thing I ever liked about my appearance.  So to lose it...well, I was worried that I was going to look like a grumpy old man (no offense to old men in general, but yes, I do mean offense if you act all grumpy all the time, snap out of it, for goodness' sake).
     I'm sure there are many Ph.D. dissertations about women's hair and culture and psychology.  In many cultures women cut off their hair when a spouse dies, or women's hair is forcibly cut for public shaming, or women cover their hair in public for religious reasons...all kinds of hair things tied up in our perception of self and in how we "present" in public and what we feel our hair is communicating to others about who we are and our sense of self.  It's fascinating.  But if I'm completely honest, I really didn't want to explore that psychology firsthand. 
    This whole cutting hair thing has been, amazingly, nothing but positive, empowering, and fun, even...up until this last, wee little bit.  I know that it seems ridiculous that going from having 3 millimeters of hair to bald would seem like any kind of a change at all and, if so, such a tiny change at that.  But psychologically this one was the harder. Because it makes me feel like I am a dude with male-pattern baldness.  I think I could somehow translate all the other versions of my hair to woman, but this final change doesn't say that to me as readily.  And it's just a little harder to wrap my brain around. Just a little.  But I'll get there.  I'll get used to having to use a lint roller on my head every now and again (a story for another time). 

     To anyone who is worried about the loss of hair from chemo:  I am not trying to downgrade the fretting and the worry and the fear.  And if you think I didn't have to wrap my head around a drastic change, all you have to do is look at the amount of hair I had.  But in the end, really, I think everything I imagined was so negative and extreme that, when it actually happened, the reality was truly no big thing.  
     To quote Macbeth:  Present fears are less than horrible imaginings.

Cancer shouldn't get to dictate how you feel about yourself!  Bald is (cold but) beautiful! Embrace it!  Gotta go through it to get to the end of it!

     

Baby Steps

     So I woke up yesterday morning, took a shower, and was doing my hair. Which means I put some moisturizer jazz in and some gel.  Just my normal thing.  And by the end of doing that, THIS is the amount of hair that ended up in my bathroom sink:

Holy crap!  And THAT was before I had any coffee!!

     Unreal.  It just kept coming and coming, like there was no end to it!  It was a horror show. For the past few days I had been noticing more hair coming out than usual in a day; for those of you who are not Curly Girls, here's how it works for us:  Everyone loses a bazillion hairs on their head every day.  Straight-hair people just shed hair all over the universe as they go through their lives (shame on  you!), while curly-haired people lose just as much hair, BUT it usually doesn't fall out and strew itself all around because it gets caught up in the curls.  So it sits there suspended in the hair on your head for the most part.  And when you shower or just kind of grab a ponytail of it and tug, a big bunch of hair comes out, hair that would have just shed all around as you lived your life if you were a straight-hair person.  Curly Girls will verify what I'm talking about.
     So, that being said, I'm used to a bunch of hair coming out all at once, and I had been noticing that instead of one bunch coming out and that was it, little quantities were coming out all day long.  Just for the past few days.  But I was fully  in my denial zone of "because I have SO MUCH HAIR I can lose a ton and that will equal the amount of hair a typical person has on her head and leave me with still enough to count as a full head of hair."  My powers of denial are awesome and elaborate.    
     But that sink full of hair just tipped me over the edge.  Visually it was just too much for me. I have been planning all along to donate my hair (might as well be as many upsides to cancer as possible), and all I could think is that stupid cancer was going to keep this hair falling and falling and by the time I went ahead to cut my hair, there wouldn't be much to donate.  And that made me very angry:  How dare you try to jack up my donation plans by wasting my hair, Cancer!  So knowing that facing that astounding amount of hair in the early morning was only going to mean so much more hair falling out during the rest of the day...well, people who really know me won't be surprised that I tend to take action when I get really pissed off. 
     So rather than waiting for Cancer to take away too much of my hair, I decided yesterday morning to beat it to the punch.  Screw you, Cancer!  I learned many things, among them: All the scissors in my house need to be sharpened.  And cutting hair is a skill I do not have. But strangely, I learned that being angry enough completely took away any sad, regretful, painful emotions I had anticipated about cutting my hair.  In fact, each time I sawed off a ponytail's worth of hair (I told you, my scissors are dull), I just felt more and more empowered.  It felt great!  Like I was in charge for a change, not Cancer dictating where I go and what I do and how I feel.  
     So I hacked away and then decided to get down to business with the clippers.  I was fully intending to go all G.I. Jane.  I was ready!  But...I guess my hair just requires professional grade clippers--I was mowing and mowing and getting nothing off my head.  Super frustrating!  I thought that if I just headed out to a "dude hair place" I would find some old, crusty barber who would just whip out the clippers and do a boot camp buzz without blinking an eye.  And that's what I wanted--no emotional attachment to hair.
     So I zipped out to Sports Clips looking like I had just tangled with some hedge clippers. And of all the luck, there were NO dude stylists in the place!  The woman who called me back to the chair was confused at first:  What do you mean you want me to buzz your hair?  You want a pixie cut?  What?  You want clippers?  All of it?  Why?  I explained that I was losing my hair to chemo.  She didn't believe it.  So I asked her to run her hands through my hair--and when her hands came out full of hair, she finally understood.  But she still didn't want to buzz off all my hair.  She kinda combed and roamed around my head and said that all the hair was coming off from the sides and the back--but strangely, the hair on the very top of my head seemed to be hanging on.  So she asked me to let her do a short hairstyle and promised that, if I didn't like it, she would then buzz it all off as per my original request.
     She got to work.  I didn't even want to look.  But as I heard the clippers going on the back of my head, I took a quick peek in the mirror.  And I said, "Well, this is going to take some getting used to."  And then she gave me a big hug.  And that's when I got a little misty.  Two tears made it out.  But that was it.  And then the poor lady was sniffling and crying the entire time she was working on my hair--it made me feel so bad for her!  The more emotional she was, the less emotional I was, so maybe there was some strange emotional transference going on.  She said that God must have intervened to make sure she didn't put on any makeup that morning because he must have known she was going to be crying.  Awwww.
     So, long story long, she did such a wonderful job and convinced me not to take my hair down to the very nubs.  And I feel super about it!  Even if this little hairdo only lasts a day and then I go into full patchy-head-zombie-plague mode, it will have been worth it.  I can get used to seeing myself without such a volume of hair on my head--it's an interim step before Kojak World.  And I'm hoping it will help me adjust to not identifying so much with my hair, and help me get used to me being "me", not me being "a person with long hair."  So I am going to just rock the short look for as long as it lasts!  Who knows, I may never go back to long hair!! That WOULD be a shocker!
     For making it through this long blather about hair, you deserve before and after pictures!
Here you go--and please know, my hair has NEVER been this short since, well, since I was likely first growing hair! No one has ever seen me like this!

November hair.  Awww...kinda miss you, hair!

Stepping out with my super cool mask on Monday!

     
    

Whoops!  Sorry, wrong picture!  Hi Charlize Badass!

You should feel it--so prickly!

Ms. Sassy Pants!

And I'm Feelin' Good (cue Nina Simone)

     Do you remember how I said that the chemo bag the center gave me was not going to do for the long term?  I did substitute a bag that I already had...it not only holds more, but it doesn't have "Hi, I'm A Bag From the Cancer Center" emblazoned across it, which I prefer.  It is likely inappropriate.  But oh well.  Works for me.  It's pink, so I guess that's cancer-themed, right?  Look at what's on MY snazzy bag!



Uh, killing my cancer.  Why, what's on YOUR mind?

     Because nothing says sexy like being hooked up to an IV through a port, I'll tell you.  Kind of have to beat people back with a stick.  Shoot, all I have to do is add my nightly CPAP mask, lose my hair, and John better watch out--they will be circling like moths to a flame,  baby.  (Why did I all of a sudden have a vision of me as Bane from the Batman movie...or being strapped to the front of a Mad Max Mobile?  Yeek!)
    
     (With no transition whatsoever...)  A friend wrote me and asked if chemo was as bad as I had thought it was going to be.  And this was part of my response, which might give you a little more insight (and reaffirm the fact that Andrea uses naughty words):

"So really, I think chemo sucks ass in a big way, but in a much different way than I thought it would.  I was expecting it to be all flu-like, or hangover, or food-poisonish:  feverish, nauseated, and then you barf your guts out and you feel a sense of relief (and then you just do it over and over).  And then one day you just feel miraculously better, maybe a little weak, but you know the fever has broken and you are on the mend.

But it is so not like that.  Never having been a drug addict, I can only guess that it is something akin to going through withdrawal from a really shit-tastic drug.  The anti-nausea meds are stellar as long as you keep on it like you have OCD…set the alarm, take the med, don’t be late, no skipping.  So there is queasiness here and there, and smells start to smell disgusting, and your sense of taste goes out the window (tastes like nothing or tastes like metal—meh), and your mouth feels like it feels if you’ve burned your taste buds on something hot and you’ve got all the open sores.  And your bones ache and ache and ache!  Laying down hurts, but sitting up hurts but walking hurts.  And your hands are shaking and you feel like you are just a hair away from starting to twitch.  But everything else is all this internal SHIT!!!  Your brain is hijacked, so your body is hijacked, and you cannot get back to yourself no matter what you do.  Everything goes into a laser focus inside yourself, and the focus is WHAT THE FUCK IS HAPPENING TO ME?!?!  You just aren’t there anymore.  And when you come back, it’s like a miracle—I just am so happy my brain remembered who I am!  That’s the only way I can describe it."

     But as long as I am feeling good, I am just going to enjoy it.  I feel like myself, just a more tired, "I need a nap", things-that-don't-actually-require-much-effort-end-up-tiring-me-out version of myself.  I've been able to visit with friends, get out to school events, and run some errands, which have all helped my mindset tremendously by making me feel like a regular person, not a sick person.  When you feel like an invalid you feel invalid--as in, not valid.  It's hard to keep a positive outlook when you feel that way. 
     Right now, even though I am feeling so much better than I was, my immune system is about at the lowest point that it's going to be, so I get to wear a mask out in public when I'm around the general population of winter cold and flu and RSV carriers, because I don't have any juice left to fight anything off.  As we get closer and closer to my next date in the Drug Den (12/17), my immune system will keep on improving and, if the blood work shows that it has repaired itself sufficiently, then I'll get the green light to commence Round 2 (where once again my immune system gets knocked down...but it gets up again...sing that Chumbawumba song...).
    

 

Marketing and Cheesy Movies

     Several people have spoken with me about visualizing my cancer.  Research has shown the benefits of picturing your cancer and imagining your body or your chemo attacking the cancer.  People come up with all kinds of really creative ways to visualize--most recently the sassy reincarnation of my mother-in-law spoke about picturing her tumors exploding into fireworks.  So I feel really disappointed in myself that my visualization is not creative at all, but directed by straight-up American marketing and my childhood love of wasting a Saturday afternoon watching B-movies on Channel 2 or Channel 44 (remember the second dial on the TV?).  So I have no original thoughts in this area.
     First let's talk about my visualization of my cancer.  I visualized it instantly as a grapefruit because...the doctor said, "It's the size of a grapefruit."  Okay.  That's easy.  But I love me some grapefruit--citrus of all kinds!  So there's no way I'm going to be picturing something as heinous as cancer as one of the best taste treats ever!  So after we moved away from fruit, my instant and unwavering picture of my cancer has been:  The green slimy Mucous Creatures from the Mucinex advertising campaign.

I am Andrea's Lymphoma Tumor!! Aaaarrr! I sound like a pirate!

     Yes, really.  A grapefruit-sized one of those suckers, but that cartoonish, gargle-voiced, slimy green personification of mucous.  Except it's cancer.  It's still green.  Still talks that way (hmmm...kind of sounds like me if I'm out of Minnie Mouse mode).  But it's a direct steal from their marketing.  I feel disappointed in myself for not being able to come up with something out of the box...lazy brain, I guess.
     But now let's talk about my visualization of how my body or my chemo is killing this walking, talking, green tumor.  But I have to back up a bit. (Cue the hazy screen dissolve to black and white--ooh, flashback!):
     When I was growing up I would look forward every weekend to a TV show called Creature Feature on Channel 2.  They would show a double-feature of any kind of combination of old, cheesy, so-crappy-they-are-golden movies.  There was some "host" of the show who would give little intros to the movies.  The movies could run the gamut from horror, suspense, or science fiction--it all counted as a Creature Feature, even when the movie had no iconic creature involved.  I saw all kinds of classics:  Godzilla, The Thing, all kinds of Vincent Price goodies, many Frankensteins and Draculas and aluminum-disc spaceships.  Loved every minute of it! 
     So does anyone remember a  movie starring Raquel Welch called Fantastic Voyage?  Where Raquel and several less-important people were shrunk down in a super cool-looking ship to microscopic size and went tooling around through someone's body in their circulatory system?  I think at one point the ship is attacked by a white blood cell?  "AAAAAAAHHHH!!  Aaaarrgghhhhhh!"  someone dies, I think, all gruesome and drowning in white foamy yack.  Go white blood cells!
     Okay, so it was made in 1966, and I'm sure I saw it sometime in the early 1970s.  I thought it was the most amazing movie I had ever seen! Science fiction AND biology?  Suspense AND anatomy?  Total drama inside a human body?  And Raquel Welch looking hot and being a brainiac?  (Okay, please tell me she was a scientist or something--I do remember her being more than eye candy.)  Anyway, it was some race-against-time thing, and of course it all works out in the end, and whoever needs to be saved is saved, I'm sure. 
     But anyway, THAT is how I picture my body or my chemo coming to get my cancer.  Now, do I actually picture Raquel all tiny in the driver's seat? 


Was she smokin' hot or what?  I'll bet my dad watched this movie with me that afternoon.  How could he not?

     Okay, I don't picture all the tiny people.  But I picture the ship itself.  It was rad.  So I picture that ship zooming through my veins to go to the tumor and...I don't know.  It probably zaps it all Star Wars style.  I don't really get that specific.  But here's the ship--it was just so completely modern and amazing when I was a little kid:

Go get that cancer!! Scotty, warp speed!  Make it so!  Chop chop, poRk-CHOP! 

And in this case, the ship in my visualization is not being attacked by white blood cells. It makes it all the way to the tumor.  But if I have to picture a little person piloting that ship, I could do worse than an 1966 Raquel Welch--I'll bet she has a knife on that utility belt and she knows how to use it!  Don't mess with Raquel!

Stalked By A Smell

     So there was this strange phenomenon that happened to me during the first 5 days post-chemo, and I've been trying to wrap my brain around it, even talked with a few people about it, but I'm going to write about it because if it's a thing for me, then it has been or will be a thing for others, I'm sure.  Like I said, one thing I know is that there is nothing unique about me and cancer--sad but true.
     I told you about the dreams--horribly vivid (even without the guest appearance of Scientologist celebrities), extraordinarily lengthy (seemingly), but I didn't tell you that I was graced with Smell-O-Vision in my dreams.
     Now, if this meant that I could smell hot, buttered popcorn, or frying bacon, or a field of flowers, or Coppertone on the beach, that might be a cool thing.
     But this was not that.
     This is one specific smell that invaded my dreams.  All of them.  Over and over and over.
     And it is foul.  Caustic.  Corrosive.  Chemical.  Hideous.
     Definitely not organic.  Like you are rooting around some old shed full of car parts and junk, and you unearth some rust-rimmed jar of viscous mystery yack that you'd slap your kid's hand in a heartbeat if she reached for it.
     And horribly, it evoked some similar smell from my childhood that I cannot for the life of me place. 
     This smell invaded each and every one of my dreams, and each time I smelled it I would desperately try to figure out what is this? And then something horrible would start happening in my dream.  So the smell was the precursor to the dream taking a turn for the worse.  It was the smell equivalent of the suspenseful music in a movie:  Cue the horror!
     So all I can think is that somehow I am smelling my chemotherapy drugs.  In my body.  On my person.  While I sleep.
     My hubs heard me talking about this, and he told me there is a phenomenon called Chemo Smell.  It relates to either the cancer patient themselves manifesting an odor of their chemotherapy or their cancer--eeeeyuck!  Or it relates to a cancer patient's sense of smell being affected by their chemotherapy so that formerly pleasant smells become unpleasant, or they perceive smells that are not actually there (chemo can alter or damage receptors for smell...nice touch, Cancer...thanks).  Because chemo targets fast-growing cells, such as all the cells making up your mucous membranes, it would be reasonable to assume your sinuses might get a little jacked.  So it could be that I reek of chemicals and cancer, and I'm smelling it on me...or I'm only imagining that I'm smelling it on me...but is someone really going to tell me, "Gee, sorry you have cancer, nice to see you and all, but you stink, dude!"
     My dog has been my steadfast pacing buddy this past week, and she has not had a problem being around me.  But my cat has kept his distance until last night when he finally jumped up in my lap.  All I could think was that my cat had been thinking I smelled nasty!
     So I guess I don't really want you to tell me if I really do smell like some Chemical Soup.  I think I'll be feeling more-than self-conscious enough really soon, so I would like to have deniability in the Chemo Smell department if I can.  But talk amongst yourselves, if you must. 

Before You Start Chemo, Read This

     I'm going to offer a few bits of random advice to anyone who is going to commence chemo treatment.  Bit #1:  Don't be a dork like me and try to stop your anti-nausea meds too soon.  The oncology nurse said to give it a solid 7 days, at least.  And then wean off--I'm cutting out the Compazine, and keeping the Zofran, and then I'll taper off the Zofran.  BTW, Zofran is my chemo BFF.  Just sayin'.  Bit#2:  I know you are totally sick of drinking water, I get it, but just do it, don't make a fuss, just effing drink your water.  Mix a little juice in it, not too much because the acid will get you.  You don't want your fingers drying out and cracking and bleeding.  Be a good girl, just drink.  Bit #3:  I know you have about 100 zillion pill bottles going right now, and alarm schedules, and all that, and you are rightfully paying attention to the ones that are prescription vs. OTC meds.  But the Claritin they tell you to take for the bone aches, and the Aleve (both TM, no generic) for the same--please put that on a schedule and take it.  Even if  you feel like you are a cow and you are chewing cud made entirely of pills.  Just take it.  It is very hard to beat the bone aches back once they take hold and, if you are in any way like me, they will start right where you had your bone marrow biopsy, and you will want to beg someone to punch you there about 27 times just to feel something different than the ache.  So be good to yourself.  Your liver and your kidneys will be up to the task of filtering all this out, just take the meds.  Bit#4:  Have a 24-hour acid reducer in your stash of OTC meds.  You may very well need it, even if you are a person who never has a problem with heartburn/reflux.  Just have it handy.  Bit #5:  Don't be a neurotic body image chick (or dude, I guess, but I always think this is a chick thing only).  When you actually start to gain a few pounds from what cancer has made you lose, when the steroids have bumped up your appetite for a change, don't be bummed that you gained a few.  Seriously, you DO know that's messed up, don't you?  Yes, admit it, you know!  If you lose too much weight they have to power down your chemo, dude, and you want full-octane cancer killing to happen.  So don't be a freak about it.  I know, it's hard.  'Cuz those of us who are freaks about that have a long love affair with our weight neuroses, and it's hard not to listen to the dysfunctional feedback loop, but you have to.  Be the one who GAINS WEIGHT on chemo--it's like giving cancer a big middle finger!!

Human Again

(Cue the choir of angels:  "Aaaaaaaaahhhhh!")

     So I slept in my bed all night last night!  Whoo hoo!  YES!  Fistbump--yeah, you'd better blow it up, that's what I'm talking about!!  No marauding creeper ghost shuffling through the house all night like some achy-bones Dickens' Christmas Carol Spectre of Chemo Doom.  It's the little things, right?  If you slept well in your bed last night, pat yourself on the shoulder and say, "Good job, Body!  Proud of you!"  I like to think the restorative sleep helped pack an extra tumor-killing punch.  And my voice does actually sound much better, so regardless of the lack of science to back me up here, I'd like to think that is because this tumor is shrinking.  We'll just spin it that way, shall we?
     Got up this morning and made the kiddos breakfast--they managed to stay upright even though in shock.  It felt good to just do my normal thing. 
     So now that I am going to cautiously say that I think this is "the worst is over" part of this Round 1 (yes, I know, I was jumping the gun a little bit back there a few days ago--I won't do that again), maybe we just have to, as a family, reconcile to the idea that during this Cancer Time in our lives, there will be that brief (I keep telling myself it is brief when compared to a lifetime) window where I just go away, The Nightime Creeper comes to take my place, and then I come back.  As long as everyone knows that I go away but I DO COME BACK, I think we'll all be able to handle it.  And if you see me when I am the NC, well, you can just remark at what an amazing likeness it is to me and then look forward to seeing me when I return (to my senses, sanity, etc.). 

(Chemo Jam from Creeperville a few nights ago:  "Shook the Devil's Hand" by Swank)

Little Things and NyQuil

     So really, when the oncology nurse calls and tells you that if you are having trouble sleeping that you can call for a sleep aid, while she is on the phone with you just say, "Um, yeah, that thing.  I need it.  Thanks."  Don't be an idiot and think you'll call her later on, and then forget, and then be awake again all night.  Also, when you think that you will move on from the useless Benedryl to something like, say, NyQuil, perhaps it would be good to remember that all the lining of your GI tract is a little under attack from the meds, so if you were to say swig your big ol' dose of NyQuil, full of alcohol, it would burn like a sumbitch going down.  Just if that were a random thought anywhere in the process. 
     I never thought I would be looking at such short-term goals with such longing:  be awake in the day, sleep during the night.  Or even, if I may, being grateful that all bodily functions continue along in their boring yet dependable way; when they cease to perform as expected, it is...unpleasant.  Be happy you can go when you gotta go and not go when you don't gotta...
     Of this we shall not speak again.  I will deny I ever brought it up.  In fact, I'll cast aspersions on you and suggest that you misunderstood me. 

Horse Tranquilizer?

Um, my salivary glands are killing me.  I'm totally serious.
And, this is the second night in a row when I'm throwing off the chains of 3 Benedryl to be awake, gosh darn it, when the whole house is asleep and I can't make any noise. 
Am I yelling right now?  I feel like I am!  Helloooooo? Wakey wakey, eggs and...oh, right, shhhhhh.  Night time.

Crawling Out Slowly

     I had this notion that while I was recovering from the chemo, that I would be able to sort of just, I don't know, just "convalesce" in a way that was familiar.  Reading, crocheting,  catch up on what's on the DVR...small pursuits to pass the time, interrupted by sleeping, perhaps some barfing if I were unlucky.  Some Donna Reed Figure coming in with a tray (wearing pearls and a starched dress) with some broth and flower in a bud vase--okay, not like that, but...maybe?  And it really doesn't work that way at all. There is no focus for any of that kind of "getting better."  No sitting still.  Even at the keyboard, my fingers are shaky and only a line at a time seems like as much as I can do.  Kind of funny, really, that I thought I could anticipate how it was going to be.  Different for each person, I know.  But funny that I thought I could figure it out ahead of time and be ready for it.  Touch of hubris.
     I actually made it for a walk around the block with my hubs and my dog.  That took it out of me.  Pretty depressing to feel so drained for such a minimal effort.  It's not as if I had been training for Ironman up until now, but still.  It's one thing if you fall down the stairs and have all the battle scars to prove to yourself why you aren't feeling up to par.  But when the reason is microscopic, it is hard to wrap your brain around.  But on a positive note, the fresh air was wonderful, and it helped me to get out of the house itself for a bit.
     Random notes:  So another reason why I feel like crap is that during the worst afterdays of chemo, my coffee tasted like meh.  Just meh.  So here your body is dealing with all this other chemical brew, and yet your brain is still crying out, "Are you KIDDING ME?  Where is my COFFEE?!?!"  So a little caffeine withdrawal on top of it all is a nice little cherry, I think.
     Anti-Scientology Dream Rant:  I told you about the dreams, didn't I?  So really, why oh why did I have to have a long series of dreams last night ALL including Tom Cruise who was being SUCH an ASSHOLE in each and every dream?!?  Young Tom, old Tom, doesn't matter Tom, just consistent ASSHOLE Tom Cruise over and over again!! What was THAT?!?  My subconscious must be pretty riled up about ol' Tommy for something in particular.  Well, he's a big boy.  He can handle my psychic venom. 
     Shameless Cancer Request:  I usually listen to an alternative station in the mornings driving the kids to school and, since my daughter has been driving and all this mess has churned up, I haven't heard the show (it only comes in on the one car or streaming on the computer).  So I turned it on the computer this morning, and I sent them an email requesting a song and telling them it was for me to motivate me after my first round of chemo.  And I asked for a friend-inspired shout out:  Suck It, Cancer!  And they did it for me.  And I have to confess to a far-too-large amount of juvenile guilty pleasure having them blare that out on the airwaves.  hee hee  But they also broadcast that the lead singer of the band was diagnosed with breast cancer a few years ago and is doing fine, so that was a great moment of serendipity, I think. (The request:  Tear It Up by Zero Zero...makes me wish I played guitar.)

Poison Not For Sissies

     Well, I think (knock on wood/or my not-yet-bald head) that I am through the yuckiest part of this round.  Remains to be seen, so I'm not trying to tempt fate or anything here.  I have to say that, knowing how this feels, it certainly makes gearing up for it several more times...harder.  Not gonna lie. Har-der.
     So I guess I would say, first of all, that I'm a fan of my anti-nausea meds.   I did not get sick (yet), and I have only felt quesiness every now and then.  So big yay for Big Pharma!! (Shhh...I did not type that.)
     The hardest thing is to feel, and you'll have to excuse my description, that I was somehow encased in glass, spiky and fragile.  And all I wanted to do was to break free and shatter all that glass...but I couldn't because this suffocatingly heavy, weighted blanket of sedative was settled all over me and I just couldn't move.  So to be jumpy and twitchy and hand-shaky and anxious and have a weird nanosecond tracking lag when I turn my head and want to scream and yell but then to be sucked into a hot marshmallow of inertia...yeah, well, that about sums it all up.  Sleeping yet wandering around like a ghost and unsettled and fidgety and tired yet awake.  And the dreams!  Oy!  I'm a spectacularly vivid dreamer--I always have been.  But these dreams have been so bad they had me almost weeping with relief that I woke up, even when I woke up thinking, "Oh shit, I've got cancer.  Fuuuuuuck."  Good times.
     My family gets all the praise in the world.  There is nothing they have not done for my comfort and care.  Nothing.  Did I tell you I'm a lucky gal?
     Got the promised mouth sores on day 5; my go-to cancer research partner-in-crime got me set up on the approved mouth rinse, so that hasn't been so bad this time.  I keep saying "this time" because I know that sometimes the side effects of chemo are cumulative.  So never say never on any of this, I suppose.
     It is a strange kind of thing to go through, sort of what you go through when a loved one dies.  Your world has ground to this halt, and for everyone else the world just goes on.  And I feel a little like I was this book, just hanging out on my place on the shelf, kinda halfway through, had my past and my future, just kicking it with all the rest of y'all on the bookshelf.  And then somebody plucked me off the shelf, ripped this one page I'm on out of the book, took the book and stuck my stupid ass one-word page that says CANCER back on the shelf.  And then they just snugged those books to the right and left up tight, and there I was.  I lost my place on the shelf.  I'm just that one page.
     So THAT was a poor, pitiful Pearl moment there, for sure.  Yes, I did get a little weepy during this one point, by myself.  But you have to reframe it, right?  So really, the books are snugged up tight to keep me standing.  It's my friends and family.  And when I'm ready to take up my space on the shelf, no one is going to begrudge me shoving over a bit.  There's plenty of room for everyone, right? 
     And for those who are betting:  The hair, the hair, the hair is still there!  ;-)