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!  ;-)
    

Turkey and the Dread Zone

     So yay, hooray! I ate a delicious Thanksgiving feast prepared by my husband and daughter, graced with a luscious dessert made by a Brazilian beauty and I did nothing but watch the flurry of activity all around me, slept, ate, slept, visited with dear friends, had lots of well wishes and long-distance love and hugs from family and friends, ate some more, felt guilty about doing nothing but doing that...but had a lovely time and felt truly thankful and loved and happy to be able to participate in the holiday that has much more concrete meaning to me this year than it has in many years past.
     I hope you all enjoyed your holiday as well--perhaps in a less sleepy way than me, unless you had post-turkey narcolepsy to blame.
     Did you finish the rest of that first round of chemo, you say?  Well, yes, as a matter of fact I did! It went much faster than day one (maybe 3 hours?)--I'm hopeful that we can manage it all in one day next time, but I do appreciate that I had sort of a Chemo Light day the first day and was able to get the lay of the land.  I feel like a little bit of a Chemo Newbie:  where is everything, which are the best chairs to sit in, do you stay closer to the bathroom where it's noisier or try to move farther away (pushing that pole back and forth can be a little tedious if you are up every 45 minutes--dude, it's a lot of liquid, I'm telling you).  
     John and I even joked that maybe there would be Chemo Hazing from the veterans, or it would sound like prison lockup:  Hey, what are YOU in for?  Uh...lymphoma.  LYMPHOMA!  That's such a wussy cancer it doesn't even say CANCER in the name!! Get outta here! Beat it! Cancer pansies!!
     But I digress.  

     This round of chemo included the introduction of, what I have learned is known in the vernacular of the initiated as, The Red Devil, or for you who are not on intimate terms with it:  Adriamycin/Doxorubicin.  It's called The Red Devil because it's, uh...red.  And I guess because it kicks your ass all over the place.  This is the one that will make my hair flee my head.  And I did not enjoy the irony of my red hair (however enhanced it may be) likely going down to a red drug.  Not fair.  This is also the one that has a lifetime maximum dosage because it can jack your heart permanently.  So you can only dance with this devil so long.  So let's hope it does its job, shall we?
     Then I got this cool patch that flashes a light for 27 hours and then injects some white blood cell building juju into you and you take it off.  Wanna see? 

Honey, does this patch make my arm look fat?

     The only thing I would say is that it takes some getting used to when you are in the dark and you have green light flashing somewhere behind  you...and okay, so I was tired...and maybe disoriented...so maybe thinking that seeing the flashing light bouncing off the bathroom walls in the dark meant that the police had pulled someone over in front of my house was...a perfectly reasonable assumption.  Anyway, it just sticks on, you can shower with it, it doesn't hurt.  It does this beeping leadup to pricking you with a needle and then inserting a tiny catheter in...but the beeping sounds loud and dramatic, and you get all worked up IS IT GOING TO HURT and then it's a total nothing.  Nuthin'.  Fuggeddaboudit.  No worries.
     Anywho, I was feeling good that we were done in the Drug Den for the day, and I was riding the euphoria wave of ONE DOWN, yeah baby, whoo hoo!  Which is all good.  And I was feeling a little protected by that anti-nausea cushion that was alluded to from the drip cocktail I got before the heavy hitters that day.  But toward early evening I was feeling a little bit hinky and almost instantly received the most perfectly timed phone call from a chemo veteran who told me, in so many words:  "Don't even THINK about counting on the cushion, get those anti-nausea meds in you NOW!"  That was some divine intervention right there, I'm telling you.  I think that was what allowed me to partake of the feast, actually. So, just passing that bit of wisdom along to others, in case you ever need to share with someone else.
     And after about 45 minutes the meds kicked in and I felt better, but then I started to feel this increasing sense of dread coming over me bit by bit:  Well, I feel better now...but for how long?  And how will it feel when I don't feel this good?  What will it be like?  Like a hangover?  Food poisoning?  When will it come?  How often?  Does everybody get sick?  Can I avoid it entirely?  Oh my gosh, when is the other shoe going to DROP?
     And then I received ANOTHER perfectly timed phone call from another cancer survivor, who gave me the best little talking to and set my mind right:  Can't get lost in the Dread Zone.  Or you are going to waste the moments when you feel well by ruining it with anticipation of NOT feeling well.  True words for real life, true words for cancer life.  
     I think for the next several days (days 4&5 are supposed to be doozies, and I'm just reporting what I've heard objectively, but not from behind enemy lines in the Dread Zone) I will be involved in sleeping, setting alarms for taking meds, and getting my mind around feeling just a little jittery and sluggish at the same time which is not my favorite combination of sensations.
     But I'll be back to let you know how it goes...maybe even a post that just says BLECH!  I'm hanging in with all your help and I do appreciate it!  xo

(Almost forgot the best chemo jams that day were:  Flagpole Sitta by Harvey Danger, Wrecking Ball by Mother Mother, and of course, my son's personal request for me to listen to during chemo, Eye of the Tiger by Survivor.  *smooches to him*)
     
   

Pulled The Trigger

Houston, we have liftoff! 

     All the thoughts, prayers, Irish curses, gypsy curses, and everything else sent into the universe to persuade the insurance company to pull its head out did the job (as well as incessant calling from John and Jennifer).
     John called Jennifer at the cancer center at 6 a.m. this morning to coordinate her call to the insurance company as soon as their offices opened in CA.  We met with the oncologist at 8:45 a.m.  And then we waited.  And Jennifer (or Tenacious J, as I like to think of her now) hit them up at 9:00 a.m.  And John and I waited in the chemo room.  And waited.  For an hour and a half.  And the nurse came in and said, "Jennifer got the authorization.  Are you ready?"  Whaaaaat?!?  Hallelujah!  Let's get this show on the ROAD!
     I would very much like to have been a fly on the wall during that phone conversation.  Just sayin'.
     And then it was a very long day of a whole lot of nothing...I think that will be the routine of a chemo day.  My wonderful friend has dubbed this poRk-CHOP therapy--and because of the late start for the day, and the very slow introduction they have to do with the R-factor, I only got the R of the pork chop today.  The R-binds with the cancer cells in the lymphocytes specifically (I believe, according to my recently acquired Google medical degree...just go with me on this...or double check me), and because it kills quickly, there is a very fast release of toxins into the body that can cause an allergic reaction.  So they load you up with IV Benedryl to preempt as much allergic reaction as possible.  You get very sleepy (in the recliner chair with the warm blankie...zzzzzz).  Then they introduce R very slowly.  And if you tolerate it, they speed it up, and continue to do so.  I got about 2 hours in and had a reaction, so they pumped me full of steroids and we had to stop for about an hour.  Then we had to start back up even more slowly.  So I was hooked up from about 10:30 a.m. until 4:00 p.m.  Next time the R shouldn't take quite so long.
    Tomorrow is the CHOP.  They will fill me up with 3 different anti-nausea drugs first, then CHOP me.  This should take 2-3 hours.  I can possibly squeak out 24 hours without nausea from the benefit of the IV anti-nausea meds and, if I'm lucky, close to 48 hours.  Which could mean that I might be eating Thanksgiving dinner and enjoying it! Then it's just a med strategy of piggybacking and staggering various meds for nausea, and it's being tired, and feeling like crap for the next week (like a killer flu), and then those who know say you start to slowly feel better and better until, at the end of 21 days, you do it all over again. 
     The bone marrow biopsy results take a lot longer than we thought (slicing and dicing and drying and staining and reading and reporting); regardless of whether cancer cells are found, the poRk-CHOP approach remains consistent.  What that result may affect is how many times I have to start the process over.  We are looking at 6 at this point.  I'll let you know if that changes.
     The staff at the cancer center have been nothing but wonderful--I had excellent care today and they are paying close attention.  John got to do a bit of work today, and I'm hoping that once we see how this settles into a routine, he'll feel as if he can leave me for stretches at a time in the capable hands there and not feel as if he cannot do what he needs to do.  Cancer World Time is like having a toddler--you think you are going to get a lot of things done during the day, you have your list or your plan, and at the end of the day you only managed to take your kid to the park, stop him from eating bird poop, and give him a bath.  Cancer has slowed the family productivity way down.  We have to find a happy medium somewhere in here.  We'll slowly figure it out, I'm sure.
     We are relieved and excited to have the authorization and to get cracking on shrinking this tumor.  I will breathe better, I will be more comfortable, and the smaller the tumor gets, well, I'd like to think that correlates with the more likely I am to one day receive the Seal of Remission.
     BTW:  Don't EVER let me bitch about that port.  I'm serious.  If I had a needle in my arm for that amount of time today, I think I would have screamed bloody murder.  I'm a PORT fan, bigtime.  The complaints about it stop now.

A Slightly Spiritual Moment That You Can Skip If It's Not Your Thing and You Think It Sounds Like I'm Starting To Do That Cancer Blog Thing

     A lymphoma survivor was walking through the room handing out Thanksgiving goodies.  She is a sweet and sassy older woman, and she stopped and spoke to us for a long time.  She had an extremely rare form of lymphoma which has no adult protocol, and she was told by all medical professionals that she would die within a week of diagnosis.  And she's celebrating a year in remission.  And she's a total go getter--a former nurse, she's now working with TLC and planning commissions and politicians and accomplishing some really phenomenal things to support people with cancer.  I felt exhausted just hearing about all her irons in the fire.  So she was the perfect person to talk to on my very first day of rescue poison. 
     But this part is really interesting and amazing and cool--this is just the way my brain works--you don't have to share this philosophy, but:  her manner of speaking, the phrasing she used, the descriptors she had about her near-death experiences, and her explanation of how her outlook on her place in the world and the opportunities ahead of her, well, it very well could have been my mother-in-law speaking to us.  She passed a few years ago, and she was a woman of iron will and gentle spirit, and it just felt like she was there, speaking through this woman.  Just when John and I needed to hear from her the most.  Like I said, it's my thing, not everyone's thing.  But it made me feel better. It made me feel positive.  And if this lady is still around tearing up the joint after her diagnosis, well, I think I've got this.  I really do.  I am confident that I have just as much an opportunity for successfully getting rid of this cancer.
     Enjoy your Thanksgiving.  No worries if you don't see any updates for several days.  It just means I'm eating (or eating and then reversing the process), sleeping, and starting to scan the pillow in the morning for hair.  Nothing wrong--just following the process. 
     All the well wishes, all the care and concern, all the plots to take down insurance companies, the affection, the food, the jokes, the offers, the hugs, the EVERYTHING--you all make me feel as if there is no way in hell that I'm not going to come through this just fine.  And when I do, you will all know that you helped make it so.  xo

     *Old school ruled the favorites in Chemo Jams today:  Jump Around by House of Pain, Nowhere to Run by Martha and the Vandellas, and Bad to the Bone by George Thorogood and the Destroyers.
    

Port Shmort

    I know this port is better than the alternative.  I've never been super fond of needles for blood draws, but after having so many needle sticks in this very short amount of time, I am developing a level of apprehension about needles that I've never had before. 
    So, having the port inserted will save me from everyone getting at the veins in my hands (blech, I hate that one the worst!) and arms over and over again. 
    I think I was a little bit on crack thinking this procedure was going to be quick.  It's good to have someone with you to be your memory back-up in case you are like me and your brain sometimes changes details to suit you, whether or not they reflect reality. Long time in pre-op, long time in recovery.  Long day in general of sleeping and shaking off sedation--not very productive, but still necessary.
    Here's basically how the port works: They make incision #1 at the "vein entry" site, they thread a catheter through the vein, and then make a larger "exit" incision for pulling the catheter back through the skin.  They attach the plastic PORTion (ha!) to the end of the tubing, then shove the whole thing back through the exit incision and under the skin, and then they tape you all up to heal.  Dissolving stitches and steri-strips, that's it.  (If you are actually a subcutaneous venous access port surgical expert, please mentally forgive my extremely brief and likely erroneous explanation.)


   

Imagine this is me, but I have a better rack.

  I'm not going to lie, this is hurting more than any of the other things.  The easiest so far has been the bronchoscopy biopsy, then the needle biopsy, next the bone marrow biopsy, and this one is the big ouch.  So far I'm not experiencing pain from where that plastic port is under my skin, but all in my neck (I suppose from having it cut open and having plastic tubing shoved, I mean threaded ever-so-gently, through my vein).  So at least I think it's post-traumatic ouch and not going to turn into "this will be your constant state of ouch for as long as this is inside you."  I'll still be stuck with a needle every time, but the needle just goes through the skin and into the port device that lives there now.  The catheter delivers the meds to or takes the blood from the vein.  Nobody has to fish around for a viable vein.  So yes, I acknowledge this is the way to go.  Just a little ick-a-docious to me to have something sitting under my skin like that.  One of my nearest and dearest has a monitor under her skin, and at least our subcutaneous foreign bodies are positioned so that we won't clonk devices when we hug each other!  (I have it on good authority that THAT hurts!)


The Last Word Tonight About Insurance

    Our cancer center has been going around and around with insurance, and so have we.  And by we, I mean my hubs.  And it's maddening.  I won't go into all the details because everyone has their own insurance horror story to tell--it's every bit as ridiculous, evasive, illogical, and exhausting as anyone else's experience.  The oncology office is still holding my chemo appointment for tomorrow in the off chance that something amazing happens and the insurance gives approval tomorrow morning.  If not, I'll just go see the oncologist, get the results from the final diagnostics, and then I guess we'll put me on the calendar for next week if we can.  The good side of that:  I'll bet Thanksgiving dinner will taste and smell very good, and I'll be a much more active participant in that.  The bad side of that:  it gives the tumor another week to get that much bigger AND it messes up my schedule of when I was counting on being functionally human in this next 3 weeks to take care of some business.  I know I'm not supposed to worry about other things right now, but I have a few commitments that I need to see through, and I was optimistic that, by starting chemo tomorrow, I would be in a "feeling good" phase when I needed to be. 

    So I'm not totally giving up--I'm still bringing my iPod with my 6+hours of music specifically selected for a Chemo Jams playlist.  I'll be happy to share song titles here and there--who knows, you might discover some new music that you like! 

     (Here's a teaser--if you don't know this one, just YouTube it.  I think my dad would have liked it:  "S.O.B." by Nathaniel Rateliff and the Night Sweats.)



Bring It On

     So I haven't had a lot of time from the diagnosis of this thing until now to feel truly scared.  I was scared right after the ENT told me I had a huge mass in my lung.  And the next day when the surgeon said "tumor" for the first time.  And when I decided to "read up on" various types of lung cancer.  But then we dove right into the deep end of testing and consults and hospital and procedures, and it hasn't left a lot of time to feel any one particular way about this situation for very long.
    However, knowing that I am willingly going to allow someone to spend 5+ hours dripping straight-up poison into me--actually hoping the insurance will come through and let this happen on schedule--well, now, that just plain scares the bejeezus out of me.  Because I know that if I am willing to let that happen, then this is some serious shit.
   I've been feeling like I'm a tiny Bilbo Baggins gearing up to take on the ginormous and terrible Smaug; to say I've been feeling daunted about the whole thing would be an understatement.  But then I realized I've been focused on the right visual all along--I've just been looking at it the wrong way.  Because who says I have to be a Hobbit?

     I can be the dragon.

Cancer Quilt

 Quilty

     My awesome auntie sent me the most amazing gift (besides all the love and best wishes that she and my uncle are sending).  I opened up a large box to find a beautiful handmade quilt inside and, inside a small pocket on the corner of the quilt, a card that explained the origins of this lovely quilt.
     My aunt has been going through intensive treatment for breast cancer, and she has been a champ.  At the beginning of her treatment she received this quilt from her dear friend--it was made by a large group of women, all cancer survivors, who make these quilts for fundraisers.  This particular quilt has a breast cancer theme with pink ribbon material popping up  here and there, or "Quilt for the Cure" fabric--each square is unique and flawless and made with love.  The quilt is made to comfort and encourage and pass on the strength and love of survivors.  And so my awesomely surviving auntie has passed the quilt along to me to surround me with family love and all the mojo of all the survivors who made it. 
    And MY job is to one day pass along the quilt to another person--someone I know well or someone I don't, it doesn't matter--who is starting treatment for cancer and needs that same mojo and comfort.
    So that gives me another "future thing" to be focused on--getting through treatment and being able to help share some positivity and solidarity with someone who is at the beginning of it all. 
    And that's very cool. 
    I wrapped myself up in it immediately like a giant hug from my aunt and uncle, and it felt great!
    Thank you Auntie!  Smooch!

p.s. Techno-Dinosaur so proud of herself for being able to put a picture in the blog.  There is no stopping me now, muah ha ha ha ha!

Ouchy

Just in case anyone wants to know: 

   Bone marrow biopsy...Versed is a gooooood drug.  Night night, wakey wakey, in and out, you are good to go.  Not sluggish, molasses limbs, loopy, saying stupid stuff that ends up captured on someone's phone and posted to YouTube...just "oh, was I sleeping?" BIG fan of Versed!  
   It seemed for a brief moment that I would not have clearance from anesthesiologist to be sedated...although the doctor assured me she could "talk me through it" if necessary, my happiness for the existence of well-applied pharmaceuticals was once again validated in short order.  I don't doubt the doctor's skills--just didn't want to do a whole Wild West, bite the bullet, Jack Daniels kind of moment if I didn't have to.
   So it's probably reached the high point of hurting now...which means maybe I'll pop some Tylenol if I think about it.  It's just a thing...uncomfortable, but not so much that I'm thinking about it all the time.  Not like I want to sign up to get one again any time soon, mind you, but it's tolerable.  So no worries.  Don't be afraid if you have to have one.  As long as you have Versed.  
  

Five Days Until Chemo?

    I thought yesterday might be a little bit more normal in our house--not so much.  The crazy back-and-forth to doctor's offices trying to schedule procedures to fit in BEFORE the oncologist's target for starting chemo on Tuesday is just about as crazy as you might expect.  Especially because next week is a short week anyway, lots of offices are closed...even under the best circumstances it would be difficult. BUT the oncology center was kicking butt and taking names on our behalf and after going around and around and around (here's John, paperwork spread all over the island, landline and cell phone going, calendar pages, pens, notes--it was a full-on project, believe me), here's where we are:
   Met with my cardio-thoracic oncology surgeon to follow up.  His words, in effect: Are you a lucky woman or what?  Yes, indeedy.  Not only did we move into a more survivable cancer, but this cancer, although rare, is presenting in an even more rare yet MORE FAVORABLE way!  Can that even be possible, you say?  YES!  Where it is usual for a lymphoma to create a tumor, it is also usual for there to be an extensive network of lymph nodes involved in the creation.  It appears at this time (knock on wood/cross fingers, toes/do a dance) that we have an extremely limited number of lymph nodes engaged in this tumor process.  Which makes successful treatment more likely.  Fistbump!!
   My surgeon concurs with the chemo course of treatment, but will follow-up with me after chemo is done to weigh in on necessity of radiation and on whether, if there is remaining tumor, this might be the point to surgically remove it and avoid the damage that radiation will do to my lungs.   So he's still in the loop.
   I had an echocardiogram today. That woman's fingers were flying on that machine--it was impressive to watch her work!  She said for her it's like driving a sports car!  So I got to see my (grainy, black and gray, fuzzy) heart beating away.  And here's the strange thing.  Of course I know that my heart never stops beating--because I'm still here.  We all KNOW our hearts are beating, and maybe if we've exerted ourselves we become aware of our hearts pounding.  But to see it and hear it on that screen just...going.  And going.  Neverstoppingneverstopping.  Made me tired just looking at it!  It was kind of amazing.  Like, "You go, heart!  Awesome!  If I were you, I'd be pooped out, man, but YOU are a rock star, dude!!"  So maybe take a moment to give your heart some props.  Your heart could chew up a marathon and spit it out!  Your heart kicks butt!! (Chest, ribcage, I dunno.)
  Went to Chemo Training today.  Walked out with a head full of information and my very own, super duper Cancer Bag to hold all my medication information.  Um, yeah, we've agreed that I cannot rock that bag. No can do.  Nope.  You know me.  I need to have some swag if I'm doing this, so although I appreciate the free bag (laugh with me now, 'cuz we know it's not free, we'll be paying through the nose as will the insurance), an upgrade must occur prior to hooking up.  'Nuf said.
   So for the med curious:  The protocol here is R-CHOP.  It is the standard for this type of lymphoma.  It's the first line of defense, accepted pretty much across the board.  The letters all stand for medications, and I feel like there should be a song:  "R is for the Really strong cancer poison, C is for the one that makes you upChuck, H is for the one that makes your Hair fall out..."  But I digress.  So anyone can look up R-CHOP and get the breakdown, but here it is in a nutshell:  The R is the super weapon, the one that specifically targets the lymphoma cells.  So it's the smart bomb.  The CHO are the general chemo drugs that just go kill any fast-growing cells.  So I guess they are the heat-seeking missiles.  One of them (don't know if it's C, H, or O) is the "yes, in 99.9% of cases this will indeed make your hair fall out, if not in the first 21 days, slam dunk baldy after the second treatment."  Eyebrows and eyelashes are a wild card.  And P is prednisone, which I just take in pills every day.
   SO...I'm envisioning, by Christmas, a bald, eyebrowless, puffy, bloated steroid me with nervous energy, agitation, trouble sleeping, nausea, and HAPPY HOLIDAYS!  If I just wear an elf cap I'll look like those elves in the stop-motion Rudolph...except for the one who wants to be a dentist who has that fly blonde 80s hairdo.  It's all good.  If I keep my eyebrows and eyelashes, I'll be ecstatic--another moment of perspective.
   In the wee hours of tomorrow morning I will be getting the bone marrow biopsy--thanks to civilized modern medicine, they do put you out for that procedure now, so I have no worries during and will have a really sore hip afterward.  I confer with another doctor later that morning.  Then Monday afternoon I get a chemo port implanted in my chest...kinda cool and gross at the same time, but infinitely better than a zillion fishing needle sticks...plus they won't actually even give some of the chemo drugs any other way, because if they breached the vein, it's baaaaaad juju for any tissue in its way.  So sign me up for the port!  As John said, "It's imPORTant."  Yes, that's the way we roll here.
   So here's the only sticky situation right now:  the insurance, although it has been approving these tests and procedures, is holding up the actual approval for the chemo.  They want 5-10 business days to issue an approval.  And oncology wants to get this show on the road.  So oncology is calling to advocate, and we have to call and agitate.  Because oncology will not, under any circumstances, begin administering chemo until that approval is given.  So send some mojo to the insurance peeps if you would. 
   I apologize for not getting back to people--have been rushing from place to place, office to office, and we are beat.  So I hope these updates will let you know what's going on, but I also hope you won't feel that I'm slighting you if I'm posting things here sometimes and not texting things out individually.  So if you want to be notified if there is something new posted, feel free to "follow" the blog.  Otherwise, if you text me and I direct you to the blog on a particular day, just know it's a day where I'm wiped out, and please don't take it personally.
   So, at a later date I will take final votes on color of professional sex trade worker wig, and, might I suggest, if someone wants to start a pool on the side to guess the date of Andrea's complete baldness (maybe extra bonus for picking yes/no on eyebrows and eyelashes), well, you could make some extra cash for the holidays.  Disclaimer:  This site in no way encourages or supports gambling, which is illegal, for goodness' sake, yada yada, you're-on-your-own-not-my-fault!
   So I'll have to figure out how to put pictures here for swag bags and hairless future me.  Mwah!
  
  

Good News (Seriously, It's Really Good!)

ANYWHO...we met with an oncologist this afternoon (who happens to have significant experience with lung cancers in clinical trials, fancy that), and she had all the test results so (drumroll/fanfare/etc.) here it is: 
The Breaking Medical Update!

Diagnosis as of now:  Diffuse Large B-Cell Lymphoma (DLBCL) and if you want to be even more specific, it seems like we're talking Primary Mediastinal DLBCL. Stage 2X (the "x" will get an identity once more tests are done).

   STOP!! RIGHT THIS MINUTE!  I saw you, so get your finger off the mouse or the track pad, stop highlighting that diagnosis, and don't you dare paste it into your Google search bar.  Not yet anyway.  I'm holding the talking stick, so I get to go first before you go read about it anywhere else! 

 

   This is GREAT NEWS!  No lie.  John and I high-fived each other in the oncology office, that's how awesome this news is.

   To break it down:  Is it cancer?  Yes.  Is it fast growing and aggressive?  Yes. 

   However, here's the beauty part:  Because this is a cancer of the lymph system that has created a tumor in my lungs, rather than primary lung cancer, my outlook just changed from a cancer that was not curable, only treatable, with a really discouraging survival rate (gotta be honest, that was some grim reading right there) to something that is not only treatable, but curable in the 80% range! 

   So I just moved into a curable category!  Sweet! 

So here's the "it's all about perspective" moment:  John and I realize that if you told us two weeks ago that I was going to receive a diagnosis of lymphoma soon, we would have been devastated.  But getting a lymphoma diagnosis after going down the lung cancer path...well, I never would have thought that I'd be happy about a cancer diagnosis, but this in particular is cause for celebration!

  

     The PET scan revealed cancer has not metastasized.  It's localized in my lung.  The tumor may be spooning with my heart right now, but it has not consummated the relationship!  That's MORE GOOD NEWS! 

   Here's what the immediate plan is:  Treatment is starting asap, even while more testing is being done:  Need echocardiogram to make sure my heart is not suffering right now, need a bone marrow biopsy to see if lymphoma is there (that's the one thing you can't see on a PET scan), have to do some blood work, have to get a chemo port surgically implanted in my chest this week (kinda snuck that one in there, didn't I?), have to go to Chemo Training (who knew, except you folks who have done it), and they are thinking they will give me first round of chemo next week on Tuesday.

   Chemo plan:  1 round every 21 days, 6 rounds if it's in the bone, and maybe less if it's not in the bone, followed by radiation (don't have any idea how long that would go).  Surgery is off the table (I'm pretty happy about that even though it derails my plan of having the surgeon keep the tumor for me until I woke up in recovery so I could spit on it before they took it away--I think it's the Italian in me maybe).

  I know that I am in for a bumpy ride here--no picnic for sure.  But I have to say, within the entire range of emotions I've been going through, the most pronounced feeling I have is one of thankfulness.  All I have been thinking is how horrible it must be for someone who does not have family, or fantastically supportive friends, or health insurance to go through this kind of a diagnosis.  What about someone who has to worry about losing their job over missing time for chemo or radiation, or who doesn't have someone who can pick up the kids or you name it.  I am fortunate, and thankful, and grateful.  I'm kind of the luckiest person I know right now (okay, I COULD be just a LITTLE luckier and not have cancer, but you understand what I mean). 

   So, I'll be busy with all the rest of these tests, and I'll be putting together my Kick Cancer's Butt Chemo Playlist for my iPod, and we'll get to it! 

  Oh, I almost forgot...now you can Google it.

  

 

Intro to Blogville

   (testing...one, two...ahem) Um, so...welcome to my blog.  It's a little hard to type because I'm also eating some crow right now; I vowed I would never blog (even using that word as a verb makes me cringe). Soooo...another one of those never-say-never moments.  
   This just seems to be the most efficient way to communicate.  That way you can follow it or just dip into it when you want to, but it's not all in-your-face with a "Breaking Medical Update!" email. 
   It's not that I mind a blog that tells you how to DO things or shows you COOL STUFF: give me a step-by-step on how to clean out the U-joint under the sink, demonstrate decorating a holiday cookie, show me weird science like what happens when you drop Mentos into Diet Coke (if you haven't done it, do it, so satisfying), let me travel vicariously with you on your European vacation, even demonstrate makeup techniques that I will never ever use, I'm all over it!  But blogs that are all about random opinions and observations about life...I must confess that I have sometimes mocked them.  A little bit.  (I know, it's not nice.)

So the last thing I want to do is create some self-absorbed CANCER BLOG:  "Oh boo hoo, poor me, I don't deserve this, cancer cancer, blah blah blah, cancer, boo hoo, ooh look how brave I am with no hair, yada yada yada."  (open mouth, insert finger, commence gagging)

   Everyone knows someone who has had cancer, and so many of my friends and family have had or currently have cancer--there just isn't any room to act like this is something unique, or that I've been unfairly singled out by the universe.  Since this is all new for us, for a while we'll be The Cancer Family and I'll be Andrea Has Cancer, but once we move forward with treatment and this situation becomes the new normal for my family and people who know me, I hope I'll just go back to being Andrea.  But I realize that we are all stuck in a loop of "what if" until all the test results are in and until we have a treatment plan in place.  The fact that I could joke a little with my son about losing my hair and that I've already promised to several people that I will spend one day in a hooker wig (we'll do an online vote--silver or fuchsia) lets me know that we will all be okay and that there is still room in all this for fun. Because if there isn't, well, there really isn't any point getting up to the starting line. I might as well drop out of the race. And you know me--that ain't happening!  

Fair warning: I have many friends who do not stoop to using foul language, so I hope you will understand that I am a flawed human being and this is a stressful time and occasionally I will drop some F-bombs and S-bombs.  And maybe use some other words that aren't very nice, either.  Please forgive.  Because this will inevitably include those aforementioned random opinions and observations about life, you can slap me around if I veer into the above described nausea-inducing blog type territory.  Seriously.  Go ahead.  You can slap a chick with cancer.  I said so.

   Now that I'm finished with the disclaimer/preamble/avoidance stuff, it's back to our regularly scheduled program. 

   The surgeon wanted to expedite the process of doing several tests in a short amount of time, so I was admitted to a hospital Wednesday night to Friday morning to get a buttload of tests done in a day and a half. 

Following is for bio/med geeks...no shame...me, too (bet I'm the only one who still has my Visible Woman from the 1970s, so I'm the geekiest of all).  Skip all this if you want.

    I had a CT-guided needle biopsy of the tumor (ouch), I had a bronchoscopy to take samples of the tumor (snoozed out, thank goodness), (this part is super gross) the surgeon then somehow flushed the blech tumor site and that grody tumor water was sent to the lab as well, I had a CT of my brain (came out clear--of course, John couldn't resist, "Of course it's clear--they found NOTHING!"  Get it...oi.) and my liver (looks like regular "you've got some cysts like you get when you get older", no biggie).  
   I came home (and was inundated with love in myriad forms from many people and it makes me misty to even think about it), and Monday had the PET scan to look for Migratory Cancer Flight Paths around Planet Andrea. (I waited to see if any superpowers arose from my 20-hours of bodily radioactivity post-procedure...nothin'.  Yes, I'll admit I tried for a brief moment to levitate objects with my mind.  It was worth a shot.)
   So now we just wait for results.  We see an oncologist today, but I don't think there will be results.  We have an appointment scheduled with the surgeon on Thursday.
   I'm just trying to keep a positive attitude, avoid going crazy in the Spiral of Unknown Outcomes, and stay away from grim statistics!  You should too!

   

More Old Stuff

emailed 11/10/15 (reposted here/more redundancy)

Hi there:

   My apologies to those who have been added to the list late (you only missed one email, don’t worry); this has been a bit of a whirlwind, and I apologize for missing people on my initial email.

    If you would like to be taken off this email list, PLEASE let me know.  Alerting people one at a time to what is going on was shaping up to be a hit or miss proposition; I am just trying to make sure people who want it get all the same information (I frankly don’t think I’m fast enough to keep up with individual texting/emailing of this magnitude.)  ;-)

But seriously, if you’re thinking, “Okay, well, that’s a really fascinating email full of fun medical facts, I’ve got the gist of it, now you can just take me out of the loop because I don’t have the mental bandwidth to deal with your current situation through email”—I am TOTALLY down with that.  Just email me:  “Love ya, but yeah…no.”

   This morning, John and I saw the surgeon to whom I was referred by the ENT.  This surgeon went through the CT scans of my lungs with me and explained why specifically he does not think this tumor (no more general “mass” references with this guy) is Valley Fever.  The tumor is growing at such a fast rate that the center is (okay, this is gross, you can skip it, blech, except for you cool science peeps) “melting/dying” because the speed of the tumor growth is outstripping the tumor’s ability to feed it blood supply.

    The tumor is 9cmx9cmx8cm (think grapefruit)—it is situated very high up in the lung so that it is compressing not only the vocal cord nerves but also doing a fairly robust job of squishing (such medical jargon) the arteries to my heart.  No, I did not secretly take up smoking.  Yes, it’s the last thing I would have expected, too.  Dumb luck. Perhaps I should play Powerball…

    The surgeon feels the tumor is aggressive, fast-growing, and he is expediting a PET scan and 2 biopsies (one that requires some hospitalization/outpatient).  He has referred me to an oncology center (that has a great reputation) for the PET scan.  The PET scan will show if the lesions on the liver are just random or signs of metastasized cancer.  The PET will also show if there is anything else floating around to explain other random symptoms. (I’m just pushing that one out of my head for now—too much to process, really.)  The biopsies will allow doctors to determine what kind of cancer cells these are, and from that point they will determine the best course of action to treat the particular type of cancer:  surgery, radiation, chemo, or a combination of two or all.  Surgery presents a bit of a challenge at present because of the close, personal relationship the tumor has with my heart.

    I am still waiting for results of the bloodwork on Valley Fever—I was hoping for a little optimism/wiggle room with the surgeon on this, but from what he can see on the CT he does not think that particular diagnosis is still on the table. Drat.  I was still holding out for lesser of two evils.

    I will likely not send another update until the biopsies and the PET scan results are in…I am under the impression that perhaps all those can be completed by…Monday?  Don’t know how long lab results will take, but they seem to be pushing things through fast, so maybe I’ll get to jump the line on that. 

    I’m doing okay, don’t worry.  I’m freaked out, yes, but I also know people (on this very email address list even) who have had the Big C and have had successful treatment, so I know it’s doable.

    So again, no news doesn’t mean bad news, it just means we’re checking the boxes next to various tests as fast as we can. 

    All the concern, good thoughts, prayers, jokes, profane (yet hilarious) comments have been wonderful—it reminds me how lucky I am to have such a wonderful family and to have such truly amazing people to count among my friends.  ;-)

Much love, Andrea

Old Stuff

Email sent out on 11/9/15 (reposted here/sorry for redundancy)

Hello everyone:

 Many of you have been asking for news on the Minnie Mouse/Linda Blair voice phenomenon post 2^nd opinion and CT scans.

 The ENT told me today that the CT scans show a large mass in my upper left lung.  This could be interfering with the vocal nerves and causing paralysis of the vocal cords.

 The CT scans also show a few spots on my liver that may or may not be related to the mass.

 I have an appointment with a cardiothoracic surgeon tomorrow morning.  The ENT suggested that the surgeon will want to biopsy the mass to determine what it is—whether it is Valley Fever or something else can’t be determined by looking at the scans.

 My blood work to test for Valley Fever will not be available until (early) tomorrow or (latest) Thursday.

 I will keep you all in the loop regarding findings—I do not know if the biopsy will happen  tomorrow or if we will only have consult and have to schedule the biopsy further out.  But the doctors are fast-tracking this, so I shouldn’t have to wait for long.

  Thanks for all your concern and your humor during the whole Minnie Mouse extravaganza!

 Xo  Andrea