4th Down

     Sorry to mislead you with the title--this isn't going to be about football!  Yes, I am one of the few Americans who has no interest in conference championships and Superbowl games.  I would go to a Superbowl party but only if there were good food.  I focus on anything on the field that has nothing to do with the game:  Oooh, it's raining!  They are going to get muddy!  That uniform color is so ugly!  Why does he keep spitting? That's just gross.  How cold is it there?  Ewww, I can see through his pants-someone needs to test them to make sure they are sweat proof!  Okay, that beard is just WAY TOO lumberjack!  I can't believe those people are cheering for an injury--how tacky!  What are those stickers on the helmets?  Look how short that commentator is standing next to that football player!  Wow, THAT'S a big boy!  Ooh, that one's a cutie pie--oh my gosh I could be his mother! Whoops--shouldn't have had the camera on that guy--everyone can read his lips!  F-bomb central! 
     Anyone who had even a fleeting thought of inviting me to a Superbowl party now has a reason to cross me off the list.  I think I might be a tad bit annoying to an actual football fan...like my husband.  He has the patience of a saint in that regard.  
     So I'm finished with the 4th treatment--checking that off the mental list feels great--now at least!  I have to confess to having a strange psychological meltdown starting the night before.  I was just not feeling psyched about "getting one more done."  Even with the good news from the doctor.  I just felt...anxious?  Discouraged?  A little too "here we go again, this is my life, hook up, feel crappy, recover, hook up, feel crappy, recover."  Seriously, it was a little unexpected pity party of one. So getting ready to go in the morning was interrupted by a bout of tears that I couldn't even really understand myself.  And my younger sister who has been in town did a great job of letting me have my moment and hugging me and then I could just get my brain back to where it had to be.  As I have learned, her son will sometimes, in the midst of a sobbing meltdown, say with passion: "You know what?  It's OKAY to cry!  It's OKAY!"  Which, when coming from a 3-year old, is totally sad and adorable at the same time.  But if he says it's okay, then I'm going to say it's okay for me, too.
     I was able to play with my sis for several days prior to getting hooked up, which has been a wonderful bonus!  Nothing too exciting--grocery shopping, binge watching TV shows, getting massages (if you live near me, I will hook you up with the best massage therapist on the planet, just sayin').  My sis got to experience the wonders of the Drug Den with me--the 4 hours that seems so quick now compared to that seven-hour extravaganza!  And Wendy Wonder Woman was my nurse again--hooray! I napped away a good portion of that time, thank goodness.  We shared a Cheetos toast--clinked the orange sticks of goodness together!  Snuggled under hot blankets--I snored and likely drooled and had my Chemo Jams going, and she listened to her audio book and crocheted, and we just chilled out!  I wore my Bald and Badass T-shirt to try to boost my psychological sass factor.  Had two lovely visitors.  In and out before you know it!
     Thank all of you for the encouraging comments after my last post that gave us positive feedback from the PET scan--it filled up my bucket of good feelings that helped me when I had those down moments.  And thanks so much to those of you who have sent cards and comics and texts and emails.  Quick shout out to the Jazzercize Queens:  You surprised the HECK out of me!! You are awesome!  Just know that when I hear Uptown Funk I'm Jazzing along with you!  Someday I'll be back--and my hair won't block anyone's view!  Ha! 
     And to all the network of family and friends in California who stepped in to make it possible for my sister to leave her family for 10 days to come be with me in Cancer World, I can't thank you enough. It takes a village, and you are it!  Hugs!  Mwah!
     So the following is just more detail on the PET results, very med-geek speak, so I'll START off with the generic and then, if you want to skip all the blah blah blah, feel free.
    We met with the oncologist prior to treatment, so I got the lowdown on the PET scan results.  I was really looking for a citrus fruit match to the tumor--I know we started at grapefruit, so I wanted to know where we are now in the vast world of fruit.  So the topic of what kind of fruit now lives in my chest has been a subject of hot debate in this house.  We were thinking lime.  A small lime.  Not as small as a key lime.  But then it was thought that there is too wide a variation in lime sizing.  More specificity was required.  So we drew out the dimensions. Maybe we can say it's like a Clementine/Cutie, one of those ones they sell in a big bag, perfect for kids' lunches, no seeds?   Anyway, I'll give dimensions later and you can make the call.
     So the CT portion of the scan gives us the size of everything, and the PET gives us the activity.  I had never seen the original PET scan, and the doctor showed me the brightly lit grapefruit in my chest from the start of all this.  YIKES!  Then she showed me the PET scan from now--hellooooo, I'm not seeing even a nightlight's worth of light!  SWEET!!  So the meds are kicking ass and taking names! It's a beautiful thing!
      Here's where we go geek.  For fruit reference:  Tumor now measures 5.8 x 4.2 cm. The SUV number indicates the activity--what kind of rapidly dividing cancer cell action is going on within this tumor:  Baseline is 1, my first PET scan showed 23.2, and now we are at a 3.5.  I'm liking that immensely!
     The two adjacent lymph nodes also have their own numbers:  One was measuring 1.7 x 1.9 cm and is now 1.7 x 1.2.  It's SUV was 4.8, now it is a 1 (baseline--whoop whoop).  The other lymph node was 1 cm and is now 8 mm.  It's SUV was 2.6, and now it is 1.7.
     Fluid in the lining of my lung is gone, swelling is down, I'm breathing easier, especially on my back.  It's feeling pretty good in the hood, I must say.  The only thing I wish is that I had some kind of outside indicator, like the little icon that shows how much battery life is left on an electronic device, to let me know where I am in a day.  I sometimes think an activity is not going to suck as much energy out of me as it does, and then I end up pretty low at a time of day when I'm not expecting it.  Sometimes I'm in a position where I can just nap, and sometimes I've put myself in a position where I can't just lay down in some random place with strangers and cut some Zs.  So I'm working on judging things a little better.
     My friend sent me a hilarious picture upon hearing the positive PET news:

     Yes, happy dancing is happening on this end.
     So you won't hear from me for a bit--the napping cycle is kicking in and I will be just going with it, so I'll post when I am out of hibernation.  It's all good.

Chemo Jams:  "Mission" by Lupe Fiasco (yes, again, it's rad), "99 Problems" by Hugo (gives it that twang that I love), "Times Like These" by Foo Fighters, "Simple Gifts" by Allison Kraus and Yo-Yo Ma, "Mess Around" by Cage the Elephant, "Holiday" by Green Day, "Yellow Ledbetter" by Pearl Jam (my favorite completely-indecipherable-lyrics-song in the whole world), "Container" by Southern Creek Players feat. Fiona Apple, "Everybody Hurts" by R.E.M. (sorry if I have repeats here...it's just what strikes me from one treatment to the next)

PET Shop Update

     Although we won't see the full report until the 28th when I see the oncologist again, I called to ask her if I could please have just a quick bullet summary, basically a thumbs-up or thumbs-down on the results of the PET scan.  The doctor's message back to me:

"I'm happy with what I'm seeing."

     If I could drink some wine, I would be lifting a glass to toast the excellence of the porkchop chemotherapy protocol (especially Rituxin--kisses to the people who brought that bad boy to the table)! 
     But since I can't do that right now (the sad reality is that alcohol is burn, baby, burn, disco inferno on my esophagus), anyone who wants to raise a glass of water, a mug of coffee, a bag of Capri Sun, or a pina colada in a pineapple (but don't taunt me with that one) to virtually toast the excellence of modern medicine will be toasting with me! 
     Thanks everyone, for helping me get this far! 

Elephant Head

     I have an elephant head.  Not that I have an actual elephant head in hand.  Or in my living room.  Meaning that my head resembles the head of an elephant.
     How, you say?  The massive skull? The wrinkly gray skin?  Elegant tusks?  What is it that makes my noggin so elephant like?
     It's this:

I-can't-stand-it-that-is-so-adorable!

     Those little wonky hairs sprouting straight up on top of the elephant's head.  Granted, the elephant has longer wonky hairs.  Much longer.  And more of them.  Many more of them.  And I don't have a random piece of vegetation stuck up there like the pictured pachyderm does.  Okay, so maybe my head doesn't look so much like an elephant's after all.  But sprouting among the smooth baldness and the rough stubble across my head are these little-bit-longer wispy hairs, isolated from each other--they didn't get the memo from the Red Devil to stop growing entirely, but they also can't get it together to form a tribe so that they can provide any covering for any part of my scalp. They look pretty silly...but a bit endearing, in their own way, I think.  They look...constantly surprised!  
     I do forget I am without hair sometimes.  I'll go to scratch my head and be surprised when my fingers instantly touch my skin.  Or I'll read some tip about conditioning curly hair and think, "I'm going to do that today when I shower...oh...no I'm not."  I've even mentally planned how I'm going to "do" my hair for the day before I remember that I don't have any hair to do anymore.
     My daily morning hairless routine is easy.  Take off my red fleece beanie--I sleep in it every night because my head is so very cold sticking outside the blankets.  I bend over the sink and rub my head with both hands to get rid of the lingering red fuzzy fleece bits that are clinging to my elephant hairs (I've even used a lint roller--no joke).  And while the red fuzz rains down, so do little pepper flakes of hair stubble.  Just a sprinkling each morning.  And then I decide what hat I'm wearing--there are indoor hats and outdoor hats to be selected.   I have only to coordinate my hat with my outfit/activity--that's it.  No shampooing/ conditioning/ detangling/ ponytail/ hairclip/ jawclip/ headband/braid/bun nothin'.  It doesn't get any easier than that.
     And to be honest, I have always had a hat obsession that I have never been able to indulge because of my love of having long hair.  If I had long straight hair, I could have rocked many hat styles--but with curly hair, putting almost any hat on it gives you that big bushy POOF of hair sticking out from the bottom and it ruins your hat look.  Like football players who have all the hair sticking out of the bottom of their helmet (am I the only one who thinks that looks weird?) and flopping around.
     Anyone who knows my taste in clothing knows that I like a little whimsy and I like a little vintage and I like a little swag on occasion.  Hats allow an indulgence on all those fronts! 
     
     My fedora with the woven gold metallic threads:

From my sis--she always finds the best things!

     My cat hat:

You know you want one!  Check ModCloth.com

     My retro 1920s-style  felted hat:

Etsy.com search for LidiaArtThings

     And that's not even the half of it!  I'm at the point where I have to accept that I have enough hats now.  That or I have to really ramp up my social life--not all my hats really lend themselves to hanging around the house in sweatpants!  
     It's remarkable how perspective changes:  my hubs and son said that if I were to walk in the room with my pre-chemo full head of hair, I would look weird to them now.  They are so used to me without hair.  And I am used to me, too. 

PET Shop

     My oncologist got me scheduled for a PET scan a lot sooner than I thought she would--this morning, in fact!  I'm hoping what this means is we'll have results sooner and not have to wait in suspense for some big Results Reveal at the next chemo/oncology date on the 28th.  Cross fingers for that!
     Ever had a PET scan?  If you have, then you will be able to correct all the parts where I botch the description.
     A PET (positron emission tomography) scan is one of the many things that just renews my extreme geek fandom of the biological sciences and the use of technology with it.
     In a nutshell:  Cancer cells grow faster than the other cells in your body.  Because they grow fastest, they consume more energy than your other cells do.  When you have a PET scan, you fast at least 4 hours prior.  Then you are injected with a combination of sugar and radioactive isotope.  And you sit still for an hour.  This lets your cancer cells go crazy and fiendishly gobble up all that sugar...and radioactive tracers.  Then you are scanned for your radioactive "hotspots" to indicate active cancer.  Kind of a neat trick, huh?
     A few observations:  It is really really cold in the room where you wait all by your lonesome and do nothing.  And by do nothing I mean nothing.  No reading.  No listening to music.  Don't even hum. Nada. Zip. Zilch.  Just wait for an hour while you become radioactive.  So I bundle up in preparation.  You need just the right shirt(s) because you want to have long sleeves but also have the ability to push them up for the doctor to access your veins...if you have to take off something to be injected, you are going to be chilly.  Very chilly.
     I thought they might use my port today, but they just used a vein.  I was a wee bit relieved because the last time I had my blood drawn through the port at the hospital, the nurse just killed me!  Oh my gosh!  And she KNEW she was going to hurt me because she told me to take a deep breath and blow it--like I'm having a contraction or something! I almost came out of the chair and smacked her silly, it hurt so bad!  So I'm a little gun shy right now...the chemo nurse didn't hurt me, but I think I need a few more good encounters to erase the bad one!
     The view in the PET shop...uninspiring, to say the least.  When I had my first PET the decor in the little room was typical Medical Office Bland.  There were some weirdly abstract pastel textured collage-y things framed on the wall.  But in this little room, there was nothing.  I take it back--there was a hook on the wall.  On the blank wall.  All walls blank save for two light switches and an intercom.  Maybe they don't even want your brain to be stimulated because they don't want a diversion of the radioactive isotope--they want it to go straight to cancer, no detours.  So I just chilled in a recliner chair under blankets and they switched off the light and I just waited an hour for my radioactive superpowers to reach full strength:
     After the hour's wait I went into the scan room--they have you lay on a metal "tray" with your arms over your head like a diver and they slide you into an open metal doughnut for a bit...I've had MRIs in the enclosed tube, and this is not like that.  The closed tube can be very claustrophobic--but the open concept is no sweat.  During my first PET there was a recorded voice that told me, "Breathe.  Breathe. Hold...(okay, seriously, still? Oh my gosh are you kidding I'm going to pass out)...Release."  Over and over.  No voices this time. Maybe because they aren't trying to find a cancer they don't know about? Maybe the tiny movements of my breathing aren't as critical?  Newer machine?  I dunno.  But it was so quiet and I was so tired I think I dozed off a bit during it.  Here's a picture of a PET scanner--I didn't take this one.  I don't think they'd appreciate my going all paparazzi in their lab:

I read that the scanner makers are having to supersize the doughnut for the supersizing of patients--so glad I fit in the standard PET doughnut!  Whew!

     
     I have films of my initial CT scan, but I don't have it in digital form to share with you. But at the Google medical library I found a comparison of a CT image against a PET image for a cancerous mediastinal lymph node.  Close enough.  Here it is--thank you to whomever this image belongs to.  I hope you are long in remission.

Remember, this is NOT me...but I can show you mine (if you show me yours--nudge nudge wink wink) if you want when you come visit.  

     So to imagine that this was/is an image of me, you have to first orient yourself to what you are looking at.  Imagine I'm laying on my back on a table and you are sitting on a stool facing the top of my head. Maybe you are going to give me a facial?  A massage?  Anyway, instead of being all nice like that, you slice off my head and shoulders and carefully move them aside so that you can look into my torso.  See the vertebrae on the bottom?  See the sternum on the top? So you are looking into the top of my lungs and that whole cavity. Imagine my grapefruit tumor growing from a mediastinal lymph node on the left side of my trachea, taking up a whole bunch of space on the left--hopefully we find out it's hogging up a whole lot less space now.  But see how the CT will show you the Shadows of Cancer Things to Come, and the PET will "light up" the malignancy?  What I am hoping is that there is no big giant ball of light to see.  I'd like not even a wee bit of a nightlight, but I don't want to overreach here.  It's only been 3 chemo rounds after all.  But what I don't want is some big ass grapefruit-sized beacon of light to shine through on this PET scan.
   I don't know how soon we'll get a summary of findings, but I will of course let you know once I know.  The good news is that a fast-growing tumor like mine also responds very quickly to chemo; I'm hoping that mine is typical in that sense.  I do not like to be the "interesting" patient--I've been that many times before and it is always a pain in the butt.  I always aspire to be the straight-up vanilla, no-surprises patient, never more than now.
     As far as chemo recovery pacing, I'm on the bone-ache portion of the tour now.  It's not my favorite, but it really isn't too awful.  I may moan and groan like it is horrible, but it's not. It is mostly in my femurs/hips, just this relentless dull aching.  It makes it hard to rest.  So I feel very tired but I can't get comfortable to nap as much as I think my body needs to.  And I feel restless because staying in any one position doesn't feel comfortable. So I randomly roam a bit.  What does work sometimes is when I make a kind of nest in bed...all bundled up, hugging a big pillow, pillow between my knees...and I listen to Chemo Jams on my headphones.  Listening to the music distracts me from the aches, and I can doze off a little bit, my brain slightly tuned into the music and slightly letting go to sleep a bit.  So that's a strategy for others, maybe.  It beats a poke in the eye with a sharp stick is all I'm saying.  
     Day 7-14 is that really low immunity time, so I get to be the Masked Avenger when I go out and about.  My Bald and Badass shirt should be arriving anytime, though, so I can suit up in that superhero outfit on occasion and shame the gawkers, I suppose. But really, I'm kind of beyond being bothered by it.  It's that beautiful "don't sweat the small stuff" clarity that I thought I had a pretty good handle on B.C. but am truly embracing nowadays. I hate to be such a Cancer Cliche, but I've gotta say don't get yourself worked up about things that are outside of your control.  Not worth your emotional energy.  Just deal with what is ahead of you, affect positive change where you can, do your best, but cut yourself some slack not to be perfect.  Every moment is a new opportunity for a clean slate.  
     Okay, enough of my cancer-inspired philosophy--not what this is supposed to be.  But thanks for the indulgence anyway.   
     

These Are A Few Of My Favorite Drugs

     Well, hello there!  Emerging from my Chemo Cocoon to say hello!  So my usual Hell Week is turning out to be slightly less hellish, and I have to think it's because of a few good drugs! 
     I've spoken fondly of Zofran, or generically Ondansetron.  That is the antinausea med I take every 8 hours.  I also take Compazine, or Proclorperazine, which is the antinausea med I take every 6 hours.  The Compazine is the overlap to get me to the finish line to take the Zofran again.  Why do I like one over the other?  They both have constipation as a side effect--WHOA, hey, good TMI times right there, aren't you glad you clicked on this post today, hmmm?  Strangely, Zofran can have stomach upset as a side effect which seems a little counter to what it's supposed to do.  And both meds can make you dizzy and lightheaded and give you liver problems, and all the endless list of side effects that every medication under the sun can give you, culminating in death, I suppose.  So why do I prefer Zofran, if forced to pick a favorite?  Um...because it lasts for 8 hours, and more in that regard is better.  And it is a smooth little white oval that is easier to swallow than the little red tab that tends to get stuck on the back of my tongue.  No other reasons that those.  That's all it takes for my love and loyalty.
     But I do love the antinausea drugs in general--they are not always keeping all of the nausea at bay, but they are keeping the unwanted end result of nausea away.   I cannot imagine what a nightmare this was like back in the day when doctors hadn't figured out the antinausea cocktail/protocol for people in chemo.  The fact that you could end up in the hospital after chemo from being so horrifically ill/dehydrated, well the insult to injury ratio is just overwhelming.  I'm lucky it's 2016, my friends.
     But on to my next BFF, Ambien--okay, well, we're not on a brand-name basis here, so Zolpidem.  But not just any Zolpiden.  This is the 10 mg tablet.  Oh, yeah, baby.  That's the one.  So we know I was a big whiner about not being able to sleep.  And we know I tried to knock myself out with cold medicine.  And I finally got the Zolpidem, but it was 5 mg tabs.  So at 10 p.m. I would take my Zofran, then take my Zolpidem, then get knocked out until say, 1 or 2 a.m..  And then I would be awake until 4 or 5 a.m.  Another Zofran due at 6 a.m., so no sense trying to fall asleep again so close to that alarm going off...and then I'd just kind of be all discombobulated and napping/stumbling around all day and do it all over again.  Not feeling very rested on that routine.
     When asked about this, the doctor told me I could take another 5 mg tablet when I woke up in the middle of the night, so that's what I did.  But it still had me waking in the middle of the night, and it still would take an hour or more for the next tablet to kick in, so it was better than before, but still resulted in disrupted sleep.  Which isn't good for anyone, really, but I'm guessing not a path I want to follow when trying to kill a tumor.  All the benefits of restorative sleep, right?
     But then the insurance wouldn't refill that prescription.  Why?  Because the original prescription was written for "1 tablet per night" and I had started taking 2 tablets per night...so I ran out of tablets faster than a 1 tablet-per night-person would run out.  So the insurance wouldn't approve a refill until the time that 1-tablet a night person would need it.  So in order to get Zolpidem, I had to get a new dosing/prescription to receive approval.  Hence the 10 mg.
     And THAT'S what I'm talking about.  It's like you are medically treating animals in the wild on a nature preserve, and you have to take down this little antelope or gazelle or something small like that--shoot it with a 5 mg Ambien tranquilizer dart.  Go ahead.  You'll be fine.  But if you need to take down a rhino?  Well, you're gonna need the 10 mg dart, buddy.  That's the only way you're going to knock the legs out from under that rhinocerous, I guarantee it.  I take it at 10 p.m. and it keeps me sleeping until maybe 4 or 5 a.m.--enough uninterrupted sleep to feel less like I'm subhuman and enough to keep my body trending on a more normal day/night sleep/wake cycle. 
     I am worried that I will never be a good sleeper again.  I used to be a champ!  My family can tell you--I could sleep on a bed of nails, anywhere, anytime, in broad daylight, a brass band playing in my ear.  No problem. I've even fallen asleep having my teeth cleaned--just give me a horizontal surface and I'm golden!  But not so much anymore.  With the chemo-induced hormonal changes, maybe I'm just getting to that messed-up-sleep stage of life a little faster than I was going to otherwise.  But it's a bit of a bummer nonetheless--sleep is a really good thing.  And if YOU are not sleeping well, you should talk to your doctor.  The long-term negative health effects of a consistent lack of restorative sleep are nothing to trifle with--I'm not kidding.  If the former Champ of Sleep can seek some help, well, so can you. 

Post Chemo Jams:  The following were suggested by loving family and I immediately threw them on the playlist.  "With A Little Help From My Friends" by Joe Cocker (of course, why wasn't that there in the first place?), "Mission" by Lupe Fiasco (a shout out to all cancer survivors and just a pump-you-up kick cancer's butt song), and "Buena" by Morphine (oh my gosh, listen to that song right this second--I defy you not to groove on that bass and sax--it's impossible!)
    
    

Happy Halfway Done Day!

     So Round #3 is officially finished, which leaves me only 3 more rounds to go!  Totally doable, right?  And even more so now, because they have been able to speed up the Rituxin drip (since I am tolerating it well now):  I was finished in 4 hours!!  Only four!!  Whoo hoo!  I'll take 4 over 7 any day!  It is a little comical because my mind was saying, "Oh cool, I just gained all this time to go do...um...well, nothing, I guess.  Go home and put on jammies and sleep."  But mentally it is still a boost! 
     I had well-meaning messages from people concerned that I may go to my treatment and find, horror of horrors, no Cheetos.  I can't say that thought hadn't been in the back of my mind as well.  So no worries, I brought in my own bag, and good thing I did!  The Drug Den was crowded yesterday, and if there had been any Cheetos waiting for me, they were long gone.  Snacks were hoovered by the masses in short order, leaving a lowly and sad bag of pretzels that no one wanted.  Isn't that always the way with the poor pretzel?  Last man standing.  Valiant pretzel, most underappreciated of all bagged snack food.
     I had a different nurse in chemo, although I did see and get to talk to Wendy Wonder Woman.  So the experience was just fine, although Wendy is the best in my book.
     The oncologist agrees that physical signs look good.  She looks at swelling in the chest, neck, and face:  better.  She listens to lungs when I'm sitting up, but then when I'm laying down as well (because the tumor, when I am laying down, is sitting on top of my upper lung...prior treatment it would make me wheeze when I was laying on my back).  All sounds like she would expect if the tumor is shrinking. 
     In 15% of cases of mediastinal large B cell lymphoma, patients can actually worsen on this porkchop protocol--so the doctor needs to have documentation, not just observation, that we are doing what is best.  To that end I will have another PET scan done a few days before my next chemo.  If my tumor is responding, we stay the course and finish the 6 treatments.  If my tumor is not responding or has worsened (which, given my physical signs, seems highly unlikely), then the course of treatment would be changed. 
     I digress here to talk about pronunciation:  I finally had to resort to looking up just how to pronounce "mediastinal", which means the space between the lungs (I'm a layperson, cut me some slack).  I kept wanting to say "meaty-ASS-tin-al", like "this cancer is really a pain in the ass."  But it turns out it's "meaty-uh-STY-nul."  Like a sty in your eye.  It was making me feel lame to be unable to reliably pronounce what kind of cancer I have.  They might boot me out of the cancer club. 
     My head was not entirely in the game the last few days leading up to chemo.  I was depressed about feeling so tired--just so out of the loop, out of my regular life and activities, kind of feeling like that ripped-out page on the bookshelf I had talked about.  And then I stumbled across something on the Internet which I thought was going to be good for me and it turned out to be a bad place for me to be:  a message board for people with mediastinal large B cell lymphoma.  Yeah, no, that is what I didn't need to see.  Because every person who posted had listed, under their name, a whole paragraph of medical acronyms related to their diagnosis and treatment.  Now I can recognize when it says "R-Chop x 6"--okay, I got it, me too, cool.  But I had to look up all kinds of other acronyms which were related to really crappy permanent side effects of the tumor and scar tissue, and then, where I read some random month/year and NED--when I would think "Hooray, No Evidence of Disease (because they will never say you are "cured", just that you are NED), great news, you are home free", there would follow what seemed to my mind to be an endless list of months and years saying "recurrence, recurrence recurrence."  Lots of different years.  And I bailed out and wished I had never landed on that site.  It just derailed my positive mindset in a way that I hadn't been anticipating.  It just broadsided me. 
     And that is what you get when you are trying to learn how to pronounce something medical.  The dangers of Google education.
     But I am back in the positive frame of mind that I need to be in--family and friends again have come through in so many ways to bolster me emotionally and physically, and I got propped back up in no time.  So no worries--Andrea's got her groove back! 
     Honeymoon will be ending sometime early tomorrow, maybe?  So there will be a lapse in updates until I am over the hump.  I will be spending the time trying to sleep, trying to get comfortable, wearing cute pajamas (Christmas gifts--I have upgraded!), drinking lots of water, setting alarms for antinausea meds, trying to put on enough lotion to keep my fingers from cracking, and wandering around restlessly and driving my family crazy, and looking forward to when I am finally able to drive again.  The ability to drive myself somewhere is my official benchmark for when the chemo aftereffects have left me--Johnny Law will not cut you slack on a ticket if you say, "But officer, I have Chemo Brain." 
     Be well everyone!  Thinking of you and sending good thoughts to all!

Almost forgot:  Chemo Jams:    "Live and Die" by The Avett Brothers, "You Can't Always Get What You Want" by The Rolling Stones, "No One Is To Blame (Acoustic)" by Howard Jones, "Simple Song" by The Shins, "Iridescent" by Linkin Park, "Supermassive Black Hole" by Muse...little background on that song...for years I've told my kids that this is my imaginary superhero theme song; the opening riff is what you would hear in the background as I swoop in wearing some really badass superhero outfit (and of course, having the awesome superhero bod) and then I start decimating scores of bad guys with slow-motion martial arts/parkour moves...yep, I've got it allllll figured out.)

What's Inside YOUR Chemo Bag?

     I did promise you a look inside my Chemo Bag--so now is the time!  Like I said, you may find yourself coveting some items in my bag, if you don't already covet the sassy and saucy bag itself.  I don't recommend you get cancer just to have a reason to get a rockin' Chemo Bag--treat yourself to any items and enjoy them in full health!  I feel like I'm the celebrity whose purse contents are featured in whatever that brain-candy magazine is--full of product placement and then enough regular-folks' stuff to make you say, "Oooh, I'm just like Beyonce! She has random crumpled tissues in her purse, too!"
    

Let's deconstruct (I can't insert photos properly to save my life--excuse this mess):

Chemo Brain Notepad: I use it to write down questions for the oncologist and to write down what she and the chemo nurse tell me, because I can't rely upon my brain to remember everything. Although, that could just be me and have nothing to do with Chemo Brain. 
Big Water Cup:  I want to avoid having to get up and down a million times to fill the small cups available there--I already have to get up a million times to use the bathroom.
Tissues:  Well, of course.  Beyonce...
iPod:  With my 111-song Chemo Jam playlist at the ready.
Noise cancelling headphones: Earbuds can allow your jams to interfere with someone else's chemo juju zone, so these ensure that I alone am enjoying my tunes.
Cozy socks:  Dude, I'm getting comfortable in chemo!  Not gonna wear shoes for 7 hours in a chair.
Neck pillow:  This is one of those "heat it up in the microwave" dealios...mmmmmm.
Quilt: We already talked about The Quilt being a fixture in chemo.  There is a ready supply of heated blankets there that I can combine with the quilt if I'm feeling chilly.  And you do end up feeling kinda chilly during chemo--if it's the temperature they are maintaining in the room or just a result of the drug cocktail or both, I don't know.
Eyedrops:  I'm spending a lot of time in chemo sleeping with my contacts in...gets a little dry in the eyes, despite all the liquids being dripped in.
Lip Balm:  Yes, you can get dry lips even with all the liquid
Phone charger:  Don't want to run out of juice while you are there, as you may want to play some Candy Crush (I know, so lame, I'm a victim of pop culture) or text your kids, or take a chemo-selfie, or what have you.
Unscented hand lotion:  Are you noticing the dehydration theme going on here?  And unscented because you don't want the aroma of your lotion to attack someone else's nose and make them feel nauseated...even if you think it smells great at the time.
Magazine:  Short attention-span reading material, if you're feeling it.
Book:  Longer attention-span reading material, if you're feeling it.

Coloring Books:  Oooooh, adult coloring books.  That doesn't mean X-rated coloring books (get your mind out of the gutter), just coloring books for grownups. 
Colored pencils/pens:  Regular, metallic, and neon...I don't go halfway with my colors, dude.
     Many of these items have been gifted to me by wonderful friends--I would not have had such a bounty of cool stuff otherwise.  I have many options for reading material and coloring books...I can rotate among them so my bag doesn't weigh a zillion pounds.  No Cheetos in the bag because I fully intend to consume the ones we are paying for in the Drug Den...and I suppose if there were no Cheetos that day I could manage to cope with it.  Same with not bringing my own snacks; they have granola bars, trail mix, chips, juice, yogurt...lots of snacks available. This is not a good thing if you tend to eat to combat boredom. But good to have available anyway. 
     Seven hours spent in the Drug Den with me would be as exciting as watching paint dry--but for me it doesn't feel that long. I'm either sleeping or just in this focused zone in my head.  It is only at the end when they are getting the patch ready and I know I'm almost done that I get a little antsy.
    Random notes about chemo side effects:  So, you got the gist of the dehydration...I think chemo gives you dry skin, and then the winter season makes it worse. But having dry skin on your bald head...what's up with that?  Seriously, I have to put lotion on my head?!?  Bald guys, do you have to do that?  Ever?  And, although I was chugging along the track ever-so-steadily toward menopause, chemo pretty much put me on the bullet train to Menopause World. Do Not Pass Go, Do Not Collect $200.  Oh my word, the hot flashes!  Some of you know of what I speak--good grief!  And again with the bald head--having to whip off the snazzy head wrap because my scalp is breaking out in a sweat during one of those glorious episodes, well, gee whiz.  The things I never anticipated when joining the Cancer Club.  

Chemo:  It's not just a job, it's an adventure.

     I have been doing my best to enjoy my last several days before Round 3; sadly the spirit is more than willing to be out and about and do lots of things, but the flesh is much weaker than I thought it would be--I tucker out way too fast these days.  I'm feeling all "baby needs a nap" after an hour or two of socializing or pretty much just being upright and functional outside my home.  I'm working on acceptance of this new reality and anticipating the probability that this fatigue, because it is worse than it was the first round, is going to have a cumulative progression.  The result of all the "I'm so tired" is that I feel more than a wee bit like a slacker and a sponge and a mooch with all that everyone is doing for me; I know I am not supposed to feel that way and that I should be focused on resting and my health and all that good stuff.  And I am working my way through all the negative self-talk and will hopefully put those counter-productive thoughts to rest soon.  It's just harder than I thought to let go and accept and be in the moment and deal with what IS rather than what I wish things were right now.  But I'll get there.  I am really looking forward to crossing Round 3 off my list--I'll be halfway done! That's worth a high five right there!
    

Baldie McBalderson

     Here's hoping everyone had a satisfying and happy end to 2015 and was able to welcome in 2016 with a fresh, positive outlook for what the new year has in store!  I am looking forward to 2016 as the year in which I will kick cancer to the curb and grow back some hair on my head! Fistbuuuuump!!
     I spent the last few days visiting with a longtime friend who drove a loooong way to come see me, which was lovely and a definite boost to my psyche.  I have been again more easily tired out doing things that I expect would take no energy whatsoever (must constantly readjust expectations), but despite this I am continuing to feel small improvements each day as I move toward Round 3 on January 7.  I joined my son in binge-watching some Mythbusters--science is so cool!! I rocked many hats to combat what seemed like subzero temps when the wind touched my bald head.  I worked on the long-belated baby blanket for my nephew who will be 4 on his next birthday (yeah, that kinda late).  I sorted through about half of an immense mountain of paperwork that, prior to this diagnosis, seemed difficult to tackle because of the amount of agonizing involved over what was important enough to keep and what wasn't; nothing like cancer to make most of the pile fall into the unimportant category!  Nice cancer bonus! 
     What I did not do:  bake any holiday cookies, send any kind of holiday cards whatsoever (which is always a random proposition with me anyway, cancer or not), get December birthday gifts or cards out on time (some family is still waiting...Albuquerque nephew...so patient...again, even without cancer that's an iffy thing to count on with me), or gain any weight during the holidays--ha!! Now THAT is a SUPER cancer bonus!!
     I did have the unique experience on the last day of 2015 of having a group of children point and nudge and whisper and stare at my masked bald-headedness in a grocery store.  I have to admit I was taken aback; I kind of forget what I'm looking like when I'm out and about.  And because I've had kids come right out and ask me why I'm wearing  a mask or why my voice sounds the way it does, I'm absolutely comfortable with being asked a question about what's going on.  Not so comfortable with the point and stare approach.  Perhaps it has happened well before this and I have just been blissfully unaware.  It may be time to don a T-shirt related to my baldness to put the staring types in their place (although these were just kids, and kids have more allowance in my mind to be dorks than adults do).  I'm feeling partial to this one:

Hmmm...is the model included with purchase?

     My first sex-trade professional wig arrived today...I ended up getting two, the popular-vote fuchsia and then the white one with aqua and pink highlights (couldn't resist--a girl has to have options). When the fuchsia arrives, I will pick a day for my social experiment.  Will people stare more at the wigged me than they do at the bald me?  I'm guessing they will. Will they treat me differently--certainly!  It's how they treat me differently that I'm curious about.  
     Next post is Chemo Bag reveal-- I try to keep my promises, as long as I can remember them.  I don't know how much my memory is falling victim to Chemo Brain these days. And apparently the Chemo Brain mixed with a higher dose of Ambien is an interesting combination.  Or maybe it's just the higher dose of Ambien?  My kids reported that I couldn't walk a straight line and was trying to work on the computer with my eyes closed. Note to self:  Take meds right before getting into bed, not well in advance.  And hide the phone and the car keys.