You Can Ring My Bell

     Whoop whoop!  Done is done!  Finito!  Finis!  Last one done!  All finished!  It's a wrap!  *Mic drop!* (Stole that title, btw--thank you!  You know who you are!)
     In other words, round 6 is in the bag.  I got a snazzy little certificate and I got to ring that dang bell!  I hope you heard it out in Tasmania!  I probably didn't ring it as crazily as I had intended, because it was SO LOUD it shocked the bejeezus out of me!  Holy moley, that raised a ruckus!  But no one threw tomatoes or eggs at me for disturbing their naps. (We took video of my bell ringing, but for some reason can't get it on here.  If we succeed at a later date, we will post it.  Captures the shock and awe! Ha!)
    Although everyone there in the Drug Den has been just lovely, I will not miss being hooked up every 21 days, I must say.  There was a little moment of panic when the nurse brought me my schedule and it had one more chemo treatment scheduled!! Aaaaack! Thankfully a friend was there to keep me from jumping off the ledge and we got it straightened out. Not that I wouldn't do another round if I had to, but by my count I was all done, baby!  I also was told that I should have brought treats to celebrate my last day, but I was remiss. So I'll have to go back and deliver some treats to avoid having a mark against my name!

Here's me, working the pole one last time:

Don't need to see my face, but look between the bags of chemo drugs on the pole, and you'll see Bill Murray peeking out!  Bill Murray juju for my last day!

And to celebrate my finishing chemo, my hubs buzzed my head again.  Here's my fuzz--quite a bit of elephant hair there:

Um, there's a little bit too much white-looking hair there for my taste, gotta say.

And then my daughter gave me glitter head tattoos--why says I don't know how to celebrate in style?

Kinda fun!

You know you want one!

Glitter Tattoos for Everyone!

What it doesn't show is that I have glitter all over my chest now, like an exotic dancer. 
Kinda goes with the pole, dontcha think?

     I have several tentative dates in about 4 weeks to have some celebratory drinks--my esophagus should be handling a pina colada or a glass of wine by then, I hope!  I understand many of you had drinks for me yesterday and of that I'm very appreciative!  

     All the good thoughts and prayers coming to me from all over the globe have made this journey of mine so much easier than it could have been.  All the cards, the calls, the texts, the food, the surprises, the gifts, the posts, the coffee, the hugs, the visits from near and far, the cartoons, the pep talks, the large golden cement bulldog, the laughter, the compliments about my bald head, EVERYTHING has surrounded me with the most positive world imaginable right now, and I truly believe that has made all the difference.  Thank you thank you thank you!  My family all deserve snazzy certificates themselves for stepping up and going above and beyond in every way.
     As for what I've got on the schedule after the requisite hibernation period, here goes:

1. I see the rock star ENT to check on my vocal cord paralysis.
2. I see a pulmonologist to get a baseline lung function test prior to possible radiation but also to gather more information related to my voice or lack thereof.
3. I see the radiation 2nd opinion peeps.
4. I make my final decision re: radiation.
5. I have a PET scan in 4 weeks to see what size fruit tumor I'm toting around in my chest these days.

     As usual, I'll be out of touch for a bit, but I will update on this little list of appointments as they come and go.  I'm hoping for good news on the vocal front but, really, if the most negative thing that I come out of this with is a Minnie Mouse voice, well, I suppose it beats not having a voice at all or the other alternative, right?
     I have it on good authority that the hair will start growing back but not all evenly.  So the advice straight from a hairdresser via my mom (who has had clients and family growing back hair post chemo) is to keep buzzing it off until it is all growing back evenly, then shave it twice, and THEN let it start growing out.  It's getting warm out there, so I don't think I'll have a problem with following that protocol if it's keeping me cooler for now.
     So I'm signing out for now!  

Hold the Mayo

     Some of you knew about my appointment scheduled for Friday for a 2nd opinion from a prestigious medical facility about radiation treatment.  Sadly, a series of unfortunate events ended up making this Friday's appointment disappear from their books; as a result, I will not get my 2nd opinion until March 24.  I was hoping to have my mind all made up/put at ease on Friday--I would then be able to go into Round 6 mentally prepared for what was or wasn't coming a month later.
     Patience is a virtue.  I'm working on it.
     Having made the trip this week to said medical complex, all I can say is that cancer is certainly a growth market--those were some swank digs, I must say!  Business must be booming!
     I'm enjoying being able to drive, although not enjoying the fatigue that comes with running a series of simple errands. I know, Wendy Whiner all the time.  Boo hoo, I'm so tired!  It's annoying, isn't it?  I annoy myself.  But I'm trying to make the most of this week and do a few things that I know I won't be up to after Thursday--like trying to dig some big holes and put in some new plants in the yard.  I have a friend flying in for a quick visit right before Round 6, so that will be lots of fun.  And my mom is flying in to be here to help with this last bout of poison recovery.  I am so lucky!
     I've warned my mom that, should she come along to pick me up from chemo on Thursday, she will be witness to the Bell Ringing Ceremony.  Okay, I make it sound like a big, formal deal.  I've only seen it once:  One of the nurses makes an announcement that John or Jane Doe has finished their last round of chemo.  And then John or Jane gets to clang this big honkin' bell mounted on the wall.  And everybody claps.  
     But here's the thing:  When I was witness to the bell ritual, after Jane's announcement, she rang the bell.  Once.  Clong.  That was it.  And I thought man, when I finally get to ring that bell I'm going to ring that sucker off the wall!  Maybe Jane didn't want to disturb people, or she was uncomfortable having attention directed her way.  But I'm just going to have to apologize in advance to all the snoozy people--heck, I'll tell folks to cover their ears. 
      Because you don't get anything for finishing chemo other than that ridiculous bell. That, and knowing you can walk out the door and not be marking your future off in 21-day increments.  You can actually think a little farther out for a change.
     So, ladies and gentlemen, it's The Final Countdown (cue the cheesy rock anthem).  I couldn't have made it this far without you.  
     

Byebrows

   I think I wiped off half my eyebrows with a face cloth the other day.  I would have sworn they were there before I washed my face.  And then...just kind of not.  So the outer half of my eyebrows have almost completely disappeared, and the outer half of my lower eyelashes are all gone...it's a little weird looking.  A little lizardlike, in fact.  I know that many women are highly skilled at penciling in their eyebrows...I'm just not very good at it.  If  you see me looking inappropriately surprised or skeptical, it might be my subpar drawing skills, not a reflection of how I am feeling.
     My family has all been sick in various ways...cold, flu, fevers, coughing, all kinds of yack.  So it looks like the Center for Disease Control around here with them and me wearing masks, gloving up (cute purple ones), and disinfecting everything so that I don't get sick when my immune system is especially suppressed.  Even after I am no longer having chemo, I think I'm on board with being extreme like that in the future.  Because I haven't gotten sick yet (knock on wood, not tempting fate or anything, just sayin').
     I have made it through the recovery phase of Round 5 and am doing well, I think (despite morphing into reptilian facial features).  I thought I was "over" mouth sores, but I got them this time again.  And although it seems strange, I had never looked in my mouth before when they were in the blister stage, only after they had become open sores (mmm...are you enjoying coffee and breakfast right now?  THAT'S appetizing, isn't it?).  This time I looked at the blister (okay, seriously, don't read this, it's gross), and it is actually a blood blister that forms before the sore.  It's super gnarly looking.  So when you feel the blisters...just don't look.  I'm already telling you what it looks like, but you don't need to see that.  Let them be sores and then use your homemade mouth rinse or Biotene (SUCH a good recommendation I got--many thanks again for that one).
     For whatever reason this time I have been doing a really poor job of remembering my anti-nausea meds.  I'll miss my time and remember a few hours later when my stomach is feeling really terrible--and that's not a good time to try to get on top of The Quesies.  You would think after doing it this many times I would have my schedule down pat.  Maybe Chemo Brain is messing up my organizational (as it does my typing/ handwriting/ remembering the proper word/driving) skills. So here's my recommendation if you have a smart phone:  During chemo recovery just have all your med times set up with separate alarms.  That way you will stay on track.  Why I didn't do that before is beyond me.  My smart phone is obviously much smarter than I am.
     One effect of cancer for me is that I make a snap judgment about any woman I see with extremely short hair:  I automatically assume the gal is growing her hair out after chemo.  Which isn't really any of my business, nor is it an accurate guess most of the time, I would think.  I suppose maybe it makes me feel like we are in the same club, even though we don't know each other.  I went to a cancer group event once--it was a free "learn how to put on makeup when you have no hair and feel better about looking alien" seminar that came with all kinds of cosmetics swag.  Anyway, lots of ladies there (and I'm feeling here like men with cancer don't have nearly enough things tailored for them), and it became very quickly apparent that the majority of ladies had breast cancer.   And it became quickly apparent that I was not part of that club.  They weren't mean and they didn't fully shun me, but they were rightly involved in discussing their surgical experiences, comparing pros and cons and difficulties they were experiencing with reconstruction.  They were going through a completely different set of challenges and they were looking to support each other.  So that was all good, but as soon as I couldn't contribute to that specific part of the conversation, it was as if I wasn't there.  Which bummed me out a little bit.  And I'm not whining or complaining--having to deal with reconstruction issues is no picnic by any means, I get that.  But anyway, if the short-or-shorn-haired women I see aren't post-chemo, well, I suppose it doesn't hurt to have an internal bonding feeling with a stranger, just for that one moment.  It's not like I randomly shout out at ladies:  "Yo!  Vincristine's a bitch, right?  Am I right?!?" (Doesn't Vincristine sound like the name of a really mean girl you might have gone to high school with rather than a drug?)
    Now that I can sit and watch a TV show all the way through, I'm indulging some of my guilty pleasures:  The Walking Dead, Vikings (it's on the History Channel so the gratuitous violence, sex, and nudity are only for historical accuracy, I'm sure), I can watch Better Call Saul with my hubs...waiting for Outlander to start up again in April (Hottie McHotScot ... mmmrow...is that another hot flash?)!  It sounds silly, but being able to sit and watch a show with a family member is something I miss when I can't do it.  Like being able to sit outside and enjoy a cup of coffee and listen to the birds in the morning.  Or take my dog for a walk.  Or just pick up the car keys and drive somewhere if I want to.  Or put a pen to paper and write something halfway decipherable.  Or read more than a paragraph of a book at a time. Little pleasures that mean so much only when you are unable to partake.  It really simplifies what makes up my "quality of life" list.  It doesn't take anywhere near as much as I thought it did.

Maybe THIS is how I'll picture my chemo for the last time--like Michonne taking out
the cancer zombies with her sword! 
Don't mess because she does NOT play!

Bill Murray, Chemo Mascot

     Round 5 is under my belt as of this morning.  Fistbumps all around!  I slept through almost the entire thing, putting headphones on not only to jam out but to drown out all the noise.  If you were wondering where everyone in town was this morning, well, I think they were all in the Drug Den.  Who knew I was sharing this side of town with so many cancer peeps?  The place was packed!  The nurses had to make an announcement (very pleasant and nice) that family and friends of patients had to vacate the cushy seats they were sitting in next to "their" patients so that arriving patients could find a place to sit for treatment.  It was crazy busy.  I came home by 2 p.m., ate some lunch, and went right to sleep until 6 p.m.  And I feel like I could go right back to sleep in a few minutes.  So I'll just bang this out before I begin the post-chemo hibernation.
     John and I went to a consult with a radiation oncologist last week.  We were  very impressed with her--great communication skills, answered all our questions, did a lot of referencing answers back to my PET scan images to talk about how radiation would go for me.  (And she's darn cute and a snappy dresser!  She was wearing some fierce peep-toe pumps, I might add.  So both the oncology doctors are really attractive and well-dressed women--maybe that counts for a little extra somethin' somethin' in fighting my cancer?)
     Anywho, this is what I learned:

·        Regardless of what the final PET shows, the radiation oncologist recommends radiation treatment, specifically because the PET can show baseline numbers on the tumor and the lymph nodes but, because this is a systemic cancer, radiation is used to put the final nail in the coffin of the stem cells in the bone marrow that are manufacturing the cancerous blood cells that started it all.

·        I also fit the protocol for radiation because my tumor was considered “bulky”—bulky means how big, and although mine was only 9 cm and bulky is usually 10cm+, it is also defined by how much of my chest cavity the tumor was taking up.  I now know that my chest cavity is 22 cm wide, so if the tumor takes up more than 1/3 of that, it fits the bulky category.

·        Both the radiation oncologist and my hematology oncologist stated vehemently that there should be no surgery whatsoever.  In fact, my primary oncologist said if someone mentions surgery with lymphoma, it’s a lawsuit.  Apparently surgery used to be standard in the old days—now with what they know about lymphomas, it is too high a risk that surgery would shake something loose to travel through lymphatic or circulatory system to start up elsewhere.  She said if surgeons are operating and see a lymphatic tumor (apparently ones with experience can tell what they look like), they will just close you right back up, end of story.  So the scar tissue mass that will be left after my treatment is done stays there no matter what.  A permanent cancer souvenir for me.

·        Her recommended course of radiation is 5x a week for 4 weeks.  This is a short program of radiation, because lymphomas are (luckily) very sensitive to radiation.  It is also a low strength of radiation, less than half of what someone being treated for breast cancer would receive.

·        Radiation would start about 4 weeks after my last chemo.

·        As far as immediate side effects:  Nothing first few weeks, then skin burn in radiation zone, possible internal burn inside esophagus (then you have an excuse to have milkshakes), fatigue (but not anything worse than with chemo, and possibly better).  She said she had a patient compete in Ironman while doing radiation treatment--so although you will not be seeing me in an Ironman or any other triathlon or marathon, I'm looking forward to the idea that I can actually start to see a possibly slow but steady upward trend in my stamina that doesn't keep getting interrupted and bumped down to square one with chemo treatments. 

·        Radiation zone:  North and South:  from neck to about the top of my heart—so the zone does include a small slice of my heart.  East and West:  a margin that includes part of my esophagus to a margin slightly outside the final tumor/scar tissue mass area (not the original size).  This will be determined by the PET scan 4 weeks after my last chemo when I've processed all the drugs out of my body.

·        Possible long term effects:  Possible lung effects could be treated with steroids and would not be a chronic problem.  Possible heart effect could also be treated and managed.  However, this oncologist said the odds are very slim, and she has personally never had a patient come down with the heart condition associated with radiation.  The risk of damage to my heart from the chemotherapy drugs exceeds the risk from this proposed level of radiation.  Cancer is ironically a possible side effect. So that’s a roll of the dice.  If I come up with cancer in the radiation zone in less than 10 years, blame it on radiation. If it is more than 10 years or outside the radiation zone, that’s just my bad luck.  (John thinks I may have mixed the cancer side effect info up--it will give me more questions to ask another oncologist, I guess!)  If I have a recurrence of lymphoma, well, if it popped up in the same area I suppose we’d argue about it.

·        Both oncologists are of the opinion that the possibility for side effects is far outweighed by the opportunity to add some percentage points to the cure/survival rate.

**Sorry the font went all wonky...techno dinosaur doesn't know how to fix it! 

So this gives me things to think about.  I definitely feel less apprehension about radiation than  I did before.  I do want to hear another radiation oncologist's take on how he or she would proceed with my case, just to add another voice to the mix and not have my emotional response to it overshadowing the facts. 

And now you probably want to know about Bill Murray.  Well, this is the mystery of the Decor in the Drug Den.  Hanging high on the walls are four large framed prints of...well...it's hard to describe.  They look like photos that have been manipulated with filters to have this sort of overexposed, slightly washed out color palette.  And they have either an empty background or some graphic effect.  And these are the subjects:

1. A giraffe head
2. A roller skate--old school style.
3. Three quarters of a Buddha statue head.
4. A headshot of Bill Murray.

Yep, that's what I said.  Bill Murray.  A much  younger Bill Murray, maybe around the Ghostbusters/Scrooged era.  And I think, unless I'm imagining this right now, that he's pointing in a kind of, "Hey there, Tiger!" way?  The very first day of chemo I thought: What the hell is a picture of Bill Murray doing here?  And no offense to Bill Murray.  I like Bill Murray. I enjoy his movies, especially some of the movies he's done very recently.  Good stuff.  I suppose he's there to evoke comedy?  As a Buddha statue is to evoke...peaceful Zen Buddhist thinking?  As a giraffe is to evoke...giraffes?  I'm a little baffled by the grouping, I  must say.  I tried to take a photo of Bill today in the Drug Den...and my phone made the shutter click sound, but then when I got home the photo wasn't there!  Paranormal explanation?  Maybe.  I will try again on the day of the final chemo to capture Bill, Chemo Mascot, in celebration of finishing round six.  And I will share it with you.  I wonder if  Bill Murray knows he's been selected to raise the spirits of people undergoing cancer treatment?  Someone should tell him--he might like that.
This just in:  John has identified the manipulated photo of Bill Murray.  It's actually the Stripes Bill Murray.  So you don't even have to wait for it--imagine this in an overexposed and faded presentation:

Hey, you, Cancer!  Get outta here!  That's a fact, Jack!

Why did the chicken cross the road?

To get from the left to the right.

He stepped out of rank, got hit by a tank.

He ain't no chicken no more.

-Stripes

 

Superbowl Sunday

Random Bits Knocking Around My Brain

I was a little surprised when my sternum started hurting me after the last two chemo treatments.  But what I found out is, in addition to the femurs and hips of personal bone-ache fame, the sternum is one of the 3 go-to bone factories for the manufacture of the white blood cells.  Little did I know. So we're killing off the abnormal white blood cells that equal my cancer and then hopefully manufacturing lots of healthy ones to take their place.  It's a lot of work, I'm guessing.  So it hurts.  Like working out really hard at the gym--no pain no gain!

One thing I learned through all this is that "white blood cell" isn't just a singular thing--there are many different types of white blood cells, and while they share functions related to protecting the body from threats to your health, they each have specialized jobs and characteristics, too.  

From the morning of a chemo treatment to the morning after a chemo treatment, my body weight goes up approximately 8 pounds.  And it takes about 7-10 days for that to disappear again.  Now that's some water retention!

The chemo oral rinse recipe for mouth sores actually works really well when you bite your lip or cheek and it gets super painful and you can't even believe that little bite turned into the sore that it is presenting to you now:  1 cup warm water, 1/8 tsp. salt, 1/4 tsp. baking soda.

Not me but you get the idea.

A cat tongue licking your bald head is a strange sensation.

Compazine, one of my prescribed anti-nausea drugs, is also used in the treatment of psychotic disorders like schizophrenia and also used in the treatment of anxiety.

This blog has had page views reporting origination in: the USA, the UK, Colombia, South Korea, South Africa, Australia, Romania, Ukraine, Russia, France, Germany, Belgium, Poland, India, and Mexico.  Hello (and all blame goes to Google Translate), Bonjour, Buenos Dias, Hallo, annyeonghaseyo, sata sri akala, Halo, Salut, Zdravstvuyte, Namaste, Hyalo, halea, and my apologies for not being able to figure out how to type with a Cyrillic, Korean, Bengali, (or other main Indian languages) alphabet.

And now, with no transition whatsoever, I am turning this into Science Sunday!  (I know, I tricked you.)  No football here.  Whoo hoo! Hooray!  We love science!  Yes!! (Although I will say, just on one tiny football note, the quarterback for the Panthers is, to make a gross understatement, very easy on the eyes.) 

Questions you never thought to ask but are indulgent enough to read  the answers to, because you humor me with your attention to this blog.  And I thank you.

Why is Andrea a Rituxan Super Fangirl? (Seriously, how can I cosplay that?) The short answer is that it satisfies my inner science geek just as much as it kicks my cancer's butt--and not trying to downgrade the CHOP meds by any means, but I'll admit I think Rituxan works in a little bit cooler Fantastic Voyage kind of way. Rituxan was also the very first  monoclonal antibody approved  by the FDA for targeted cancer treatment--so that rocks in itself.  Team Rituxan:  We're Number One! 

     What follows is my best stab at trying to describe how it works in a way that I can understand (Google Medical Library again to the rescue--any misinformation is my failure to synthesize Internet material or my poor choice of websites).  Be gentle with me, oh teachers of science--maybe you can just give me an A for effort?  Let's break it down:

Lymphoma is cancer of the lymph system, your body's immune factory. Lymphoma comprises many different specific cancers that fall under two categories:  Hodgkin's and Non-Hodgkins.  Non-Hodgkin's lymphoma comprises maybe 60 different cancers, is one of the most common cancers in the US, and all together makes up about 4% of the total cancers in the US.  My type, mediastinal large B-cell lymphoma, is a rare subtype of non-Hodgkin's lymphoma that makes up 2.4% of all those non-Hodgkins cases. (Long-shot at getting it, but better odds than winning the lottery, I guess.)

What is  Rituxan?  It is a a man-made antibody that, when introduced into your bloodstream, races around your body until it finds its soulmate, the B-cell lymphocyte. And that is where I have cancer--in those B-cells.  For now the cancer just wants to hang out in the lymph nodes to the left of my trachea and in that tumor, which is an accumulation of those jacked up B-cells.  With lymphoma the cancer can jump the express train of your lymphatic system and set up shop in any other part of your body where there are lymph nodes...and your body has a whopping lot of them.  I've read 550 and I've read 1,000. Whatever.  A whole bunch of stations on the lymphatic railway.  Thank goodness my cancer cells just want to hang out in one place!

You wrote blah blah blah lymphocyte: So what is a lymphocyte?   A lymphocyte is a small white blood cell, manufactured in your bone marrow, that produces T-cells, B-cells, and killer cells, which work differently within your body's immune system to attack foreign invaders such as bacteria and viruses.  For example, a T-lymphocyte scans your cells for infection and, once it finds something, kills the cell.   A healthy B-lymphocyte can recognize millions of different foreign molecules by their individual antigen markers (the ID badge for molecules foreign to your bod); once it finds a foreign cell it can grab hold of it and make a citizen's arrest, waving a red flag to alert the other fighters in the body to come kill it. The way you have and build immunity to foreign gack that manages to make it through your body's external defenses (like skin, mucous, all that good stuff) is that these immune system cells not only can identify as foreign things that enter your body BUT they remember what they did before so they can respond faster the next time that same bad juju gets in.  

Because of cancer, my B-lymphocytes are not dying off when they are supposed to, are growing too fast and too big, and they cannot do the job they are intended to do.  And their job is important.

If only your B-cells are affected, why can't your body just kill the lymphoma with T-cells and killer cells like it does all the other bad stuff that is introduced into your body?  Okay, I'm not going to pretend I can explain that fully because I really can't.  Killer cells routinely go around and kill cancer cells (rapidly dividing cells, supergrowers) and other nasty things in your body.  (Give your immune system a big hug right now!)  What I understand with this lymphoma is that a cancerous B-lymphocyte contains a specific protein molecule that effectively shuts down your body's own surveillance system and inhibits your immune system's ability to kill the cell even if it found it...which it can't with the molecule cloaking device in play.

How does Rituxan work with the B-cells?  Rituxan is drawn like a moth to a flame to those B-cell lymphocytes AND it hooks up to that specific protein camouflage molecule that exists only on that cancerous lymphocyte and nowhere else. Rituxan can't fit anywhere or do anything else. It's like a key in a lock--Rituxan can't do anything to any other cell but that one.  When Rituxan finds the abnormal B-cell lymphocyte, it's an instant shotgun wedding. Once the Rituxan  seals the deal with that protein, it is believed to do several things to eliminate the cancerous cell it's doing the tango with (muah ha ha ha!):

• Rituxan waves the red flag:  Other cells of the immune system (natural killer cells, T-cells, and macrophages) can saddle up to attack and destroy the now antibody-labeled B-cells. Take that, cloaking device!  You are served!
• Rituxan calls in specialized immune system proteins that punch holes to destroy the now outed abnormal B-cell.
• Rituxan hits that red button on the bridge of the Enterprise:  It triggers an internal signal that tells the tagged B-cell to self-destruct.

Rituxan has dramatically and positively changed the survival rate for people with B-cell lymphoma.  The change from the CHOP protocol to the R-CHOP protocol has been a total game changer.  So on my side are the following awesome factors that make up the checklist on the prognosis charts:  I've got Rituxan.  I'm younger than the average age of 65 for patients with B-cell lymphomas (although I'm right on target for mediastinal peeps).  My lymphoma tumor and affected lymph nodes are located above my diaphragm (below the diaphragm is not as good).  I only have one tumor in one place.  And my treatment began when I was only Stage II.  These all add up to a projected extremely high 5-year no-recurrence survival rate.

But wait, I thought you loved the R2D2 patch, too?  Ah, yes.  The Neulasta patch.  I love the convenience and techno-cool factor of the patch, but Neulasta used to be available only by injection, and I would love it that way, too.  I've even seen Neulasta commercials on TV now--maybe they have always been there but I just have a heightened awareness now.


Neulasta stimulates the manufacture of a specific type of white blood cell called a neutrophil, which ingests and destroys invaders.  I've read that neutrophils are in the first responder ranks of white blood cells, and I picture them like the Fantastic Voyage foamy white intruder-killing blood cells:  I am going to eat you!  On days 7-14 after chemo, your body is at a low for white blood cells because, well, the chemo has been killing them all--both healthy and unhealthy ones.  So Neulasta turbo-charges your neutrophil production, reducing both the length of time you are so very low in white cells and how low you actually go; this makes you much less susceptible to all kinds of infection and possible complications that you would normally be able to fight off but would have a hard time doing being so white-cell depleted after chemo.  

So I've got the Rituxin shutting off the cancer cells' cloaking devices at the same time the Neulasta is cranking up the manufacture of these Berserker neutrophils--and they can go get at the newly unveiled cancerous B-cells. Nice how they play so well in the sandbox together, don't you think?


Chemo Jams:  "House" by Air Traffic Controller, "Run" by Amy Macdonald, "The Story" by Brandi Carlisle, "Worst Day Since Yesterday" by Flogging Molly, "So Rock On" by Luscious Jackson, "Centipede" by Knife Party (my cancer is the tarantula and the chemo drugs are the centipede), "Waiting for the End" by Linkin Park, "Timshel" and "The Cave" by Mumford & Sons.

Pinky Tuscadero

     I never knew how wrinkly it can be right where your ears attach to your head.  I feel like I look like this on the outside:

Yes, elf cats are real.

     But with my hormone factory being (temporarily?) shut down AND the chemo aggravating the resulting hot flashes with temperature spikes of its own, I feel like this on the inside:

Whatever I touch starts to melt in my clutch.

     All of a sudden I have to whip off my hat because my head has burst into flame!  I'm breaking out in an instant sweat on my head, on my upper lip--and then I want to take off shoes and socks and any kind of sweatshirt or jacket.  And the minute I do that, my Inferno Head cools off and I get all clammy and chilled and my feet complain that they are too cold and I just go back and forth between those two poles (ahhh...see how I did that? Hot and cold? Heat Miser AND Snow Miser? Poles?).

     If I am with family or friends in my house I feel okay just "disrobing" my head (seriously, not sexy, even though I'm using the word "disrobe")...but it feels a little intimate out in the big world of strangers.  I am working on getting over the uneasiness I have just taking the hat off without somehow checking with people ("Uh, I'm sorry, pardon me, is this going to make you feel uncomfortable to have my shiny bald chemo head come out right now?"), because when the heatwave hits, it hits hard!

Alter Ego: Fifi Bonbon

When I'm a grandma.

     Do you remember way back when I talked about wigs--voting for fuchsia or silver ?  Well, fuchsia won by a landslide, but I only just received my perfectly pinkalicious wig to go alongside my white-with-pink-and-blue-highlights wig.  Here are both--no face, because this is the Internet after all and no one needs to know what I look like as a complete entity. Unless you want to think I look like that Charlize Theron picture I posted previously--please, proceed with envisioning me that way, by all means.

     When my sister was in town we went on a family trip to the grocery store in the evening whilst I donned my pink wig for its first public outing.  It was a really cold night, and the wig was nice and toasty for being outdoors...and inside the freezer section.  Now, I haven't taken the white wig out for a comparison spin yet, so I have yet to assess potential differing responses to each wig, but I will tell you what I noticed about how people behaved and responded; whether this is because I had a posse with me that made me feel more confident and so I presented myself more confidently, or whether this is how the public would react even if I were by myself, this is the bottom line: Teenagers and young people didn't look twice.  They either interacted with me and/or ignored me as they would any other adult who can't ground them, but the pink hair seemed to make no difference. Same with people about 20+ years old than me.  They didn't seem like they gave a flying flip one way or the other what was on my head--again, whether they were interacting or just passing by (and those who know me know that I am an Interactor--I DO talk with strangers, thank you very much).  That was very cool.  The people who DID give me the wee-est bit of a stink-eye were...drumroll please...women about my own age. Not men of any age grocery shopping by themselves.  But mid-century solo ladies like myself.   Which I wasn't expecting at all.  I expected moderated derision/lip curl from teens or an older crowd--not so, to my surprise.  I didn't think the harshest critics were going to be...ME people!  Very interesting!  So back off, stink-eye people!  You can't judge a book, etcetera!

     So recovery is slower this time; I'm more tired, much more dependent on anti-nausea meds, more "I'm trapped in gelatin" at some points with regards to snappy brain function. I am always acutely aware that I have the absolute and priceless luxury of simply recovering from each round of chemo; I do not have to cobble together sick days, borrow personal time from coworkers, meter out a few days off after chemo and then head back into work while I'm feeling totally off-kilter and then function to full capacity to meet my work and home obligations.  I don't know how people do that, I really don't--the thought staggers me.  I can't imagine what my job performance would be, or how I would feel by the end of a day, or how much longer a body would take to recover when you can't just rest when you need to rest.  I think of how this chemo would translate into my past career lives and, although I know there are so many people who gut it out and balance it because they have no choice, I don't envision me doing that successfully at all.  I decided to give up my volunteer life knowing my brain is not fully on point at any given time--if I had to punch the clock and bring it every day, well, damn.  Those folks are simply amazing.
     On a happy post-chemo note, no mouth sores this time, so that's a nice perk.  Eyebrows are thinning waaaaay out and eyelashes are are all fairly stubby or downright gone, especially on my lower lids (refer back to that first photo on this post).  I have to think by the time I get to Chemo Day #5 I will be so tired I'll just sleep the entire 4 hours in the Den unless my bladder wakes me up.  So here's a note specifically to any "going through chemo peeps" who are in a position to rest up, although I issue a disclaimer here:  Maybe I am just the most slug-tastic chemo patient on the planet, but it is possible you may feel a little bit like me.  Yes, it is true what everyone who has had chemo is telling you:  You will be tired. Really tired.  And it's hard not to be your own worst critic and think you can pull yourself up by your bootstraps and just "get over it."  There is everything you want to be doing, and everything others are generously doing for you, and when you feel wiped out there comes creeping an image of yourself as a lazy so-and-so that is truly unpalatable:  

Methinks I am about to swoon!

     It's hard to have that picture in your personal negative feedback loop.  There are so many people expending effort and energy on behalf of me and my family, and I feel like I'm not making an effort in comparison.  I even know better than this, and I still can't keep the image completely at bay.  The truth is that you cannot "will" yourself to have more energy, even as you can do things to maybe pep yourself up:  sit in some fresh air for a bit, take a wee little walkabout maybe, make contact with someone, watch Raylan on "Justified" (that's a whole 'nother post, boy howdy), post a picture of how you look like an elf cat, all those good things that replenish you.  And if you don't have the energy for those things on any given day, that's okay.  If your energy level isn't consistent from one day to the next, that's just the way it is--you aren't on anyone else's recovery schedule but your own.  So you can't complete your whole laundry list of chores, those super-important "things to do" that are bugging you--that's okay.  If you can spend 10 minutes, great! More?  Awesome!  Think you can, but then you get a little too tired?  Take a nap.  It's oooookay.  The only person who should be tallying things up on a scorecard is, uh...no one.  So stop it already.  It serves no positive purpose right now.

     And speaking of positive purpose, I'm must say once again how much I appreciate what is being done for me and my family.  I cannot express how grateful I am and overwhelmed by the human capacity for kindness and generosity being demonstrated in my life right now. I just know the best people ever, I think.  And to everyone who is sending good thoughts, I thank you.  You don't have to leave a comment to make a difference to me--I know you are out there.  Many many thanks to everyone.  And that includes my family here who is making do with a whole lot less of me than normal, even as they see a whole lot more of me hanging listlessly around the house.

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)