Tuesday, November 30, 2010

it should have been different, but it wasn't different was it?

Last ER visit........I was neutropenic
Well, it is after midnight............so one week from today, I will undergo my last chemo treatment--bitter sweet.  Without chemo I am fighting this alone......or at least that is what the little voice in my head that creeps in with a whisper in the dark of night, when I lay sleepless with my eyes open, trying to conjure up some sort of relaxing imagery (which, by the way, I have found is a waste of time when you are already wound so tight you can feel your heart beat in your ears.............).  Without chemo things can grow....not just my hair, but tumors and cells and the shit that is being annihilated right now........it can grow.......that is scary. (I bet you were expecting me to say 'and I too can grow, from this experience' but I am not feeling to 'glass-half-full' tonight).

Sometimes I feel like, if I just went somewhere else, this would be easier.  I would be on "vacation" so things would have an easy-breezy type of feeling..........I wouldn't be dipping into the negative, I would have a drink (or 7) with a little umbrella in it and my fears would melt away.  I would still have my diagnosis, but the fear would be gone---worth the plane ticket if you ask me.  There have been a few days where I felt minutes away from booking a one-way ticket to anywhere but where I am. Far from realistic, you can't run from your problems.........and denial and I don't really work so well together.  I can handle this, I have been handling it, but the closer I get to the end of my chemo cycle the more the fear is sneaking in..............the thought of bone scans and PET scans and waiting for the other-shoe-to-drop may drive me crazy.

Worry is the monkey on my back.  We have known each other my entire life (heavy bastard), I was a worrier before cancer, I remain a worrier now, and I can only imagine the future.  I know I don't have control over a vast majority of my life--hell, I worry about that too!  If cancer doesn't kill me, the worrying about cancer might.  This is what I will work through while I run my fat ass off on the treadmill after I regain enough feeling in my feet so I don't fall off this treadmill at the gym and make an even bigger ass of myself.

Jessica, Me, Hiley at the Seattle Marathon this past weekend

With the end of my chemo coming up a few thoughts have been running through my head:

1. I will never be embarrassed, scared, or shy of telling people my age.  I don't care how old, 30, 40, 90.....each birthday I chalk up is a big old "fuck you" to cancer.........and I never understood that "lie about your age" business anyway............if you have wrinkles or your boobs are a bit saggy I am not going to guess 29 anyway.....

2. I have a ticking time bomb now tied to my veins.......statistics are scary, I am a survivor.........but more than likely will have to battle this again, it's realistic, it's terrifying, it's probably the truth.  I will continue to worry for my friends and family.........anyone who was born with a vagina...........statistics are scary and unfortunately if you are born with one, you are probably born with boobs and BAM those statistics skyrocket.  My body has turned on me, and no matter how much I try to stay ahead of it..........it has a mind of its own.  But I could also get hit by a bus tomorrow........so I will do my best to keep that in the back of my mind and work on the guided imagery................of me hitting cancer with a baseball bat.

3. Scott is not only pretty fantastic, but he has held me up when I couldn't find the strength to......both literally and figuratively.  I new I was lucky because he is one of the nicest people I have ever met......one of those "give you the shirt off his back" type of people--they are a rare find, I found one......  But at 26 you don't find many guys going through what this has put him through.......I bet he is the ONLY 26 year old that has ever said "you can wear my pajama pants to the movies, they look fine" (and meant every fucking word) to his wife--I didn't wear them but I know if I chose to he would have held my hand and not gave it a second thought.  This may seem small, but I think it is a great example of how he looks past what this has done to me physically and remains solid in our relationship........something a lot of guys in their 20's just don't understand. We are stronger together, I am better for having him, I am not sure I could do this without him.......

4. People are amazing when you give them the chance.  People jump on the bandwagon, not sure where it will take them, but they are willing to ride it out because they care.........it is truly unbelievable.

I just hope the bandwagon runs over the fear.....or at least gives me a real good head start.

Friday, November 26, 2010

I want the merry-go round!

Minutes before my mastectomy in July..............where I buckled in for this roller coaster.
Today my body has been pretty sore.  I am still having trouble sleeping and I thought--if crazy bitches are out there shopping right now, the least I can do is slap a blog together before I try this whole sleep thing again--or my meds kick in and do their job, they really have been slacking lately.

One holiday down, one more to go.............then I am finished taking a second seat to cancer.  Today was far from a typical turkey day--but it was wonderful just the same.  What is important to me is that everyone I love (near and far) were safe and having fun of their own, surrounded by lots of love and laughter. Traditions are something that I love to tweak and continuously rework---traditions can be fun but don't always have to be the tent poles of holidays; things change, people change, and with those changes holidays, traditions and life has to change.  I am thankful that my family and friends are adaptable and resilient---not all of us jungle worthy....but everyone is looking good for natural selection. 

People who have problem with change have issues with traditions changing...it is my assumption that this would extend to life events including cancer, loss of a job, etc..... (important to remember that I love to have control of things, I make lists miles long, just to add another list to them the next day, and I am would tighter than.............well something really fucking tight).  Though I am a person who loves to have control, I am adaptable............I am a freaking doula!  You can't control babies or mamas-you have to let things happen and embrace each change, same as life.  So when I found out I had cancer I used both 'sparkling' sides of my personality---I bought every book possible and did more research than I did in graduate school, and accepted that I was never going to be the same, everything was going to change and buckled myself and loved ones up for one hell of a ride.

This is not the first time traditions changed in my family.........when I met Scott (who works every holiday) my family and I decided that it isn't the day that is important--it is the time you get to spend together, so not just on the 25th of November...........we can do thanksgiving anytime, as with other holidays.  Scott and I are on the same page and we have celebrated holidays since we have been together on random days, random hours, random, random, random...and wonderful.  Once we have kids we are excited to create traditions with them and bring what we have done and bits and pieces from the Greenaways and Barkleys into a beautiful blend of love, tradition, fun and laughter--I can't wait!!

When my dad passed away, the holidays were still coming at the end of the year--traditions were going to change..............a lot.  My mom and my sisters and I became a meld of tears, laughter, a fuck load of kleenex, beer, love and Greenaway blood.  We all changed when my dad died, we had to adjust--we weren't given an option, we couldn't bury our heads in the sand, there was no going back.  Our family will never be the same, but what came out of my dad passing away what the incredible strength he had instilled in my sisters and I and how incredible and empowering my mom is!  We Greenaway girls are tough--I know my dad is proud and I also know that when I need it in this tooth and nail fight I am in with cancer, he gives me a kick in the ass. 

Holidays are hard too........it isn't always a love fest, not always rainbows, kittens and marshmallows.  I have been lucky enough to have grown up with a family where holidays are great and not full of tension (yeah, we have some crazies....myself included on occasions) but in the end it is love and laughter.  For the first time that I can remember, holidays are hard for me right now.  I am not myself, I have fucking CANCER, no hair, no boobs,a bad memory, infections on top of infections, I am exhausted, I am fat, I am in pain, I shudder when I look in the mirror, and I really don't feel like celebrating much.  I don't want to get dressed up to sit and eat turkey, even surrounded by those I love.  So I didn't.  My sister came over, we drank mimosas, she made challah bread and we ate pizza---it was wonderful.  There was a range of TV watching, stand up comedy, oldies music clapping, and laughs--and I did it all in Scott's pj pants and the same t-shirt I wore to bed the night before........................fancy.

this battle is hard work
For me to get ready (takes 15 minutes.............feels like I ran a fucking marathon).  Even wearing jeans has become miserable....it hurts, I can't breathe and I sweat like crazy............my makeup runs and it looks like I have been crying (which in reality is a precursor to me crying).  Many days I don't like to do it, I guess it is lucky that I don't feel I have to very often.  When you come to visit you will find me in my husbands pj pants, a loose t-shirt, slippers (love you Tas!), and a blanket near by for after a hot flash.  In my house I am comfortable........but I don't want to do that when I go out "into the world"  because people already stare........that would make it worse--it would confirm what everyone was wondering---I am a "sick" person.

I am looking forward to the future where I am not locked in a battle with cancer.  This battle sometimes takes over my life and I forget that someday it will get better.  I have minutes, hours, and days where I feel sorry for myself, and have "poor me" moments.  Sometimes I scream and yell--the only reason being I can't think of words to express what is going on in my head.  With tragedy comes change, it is inevitable--but you can chose how you come out of it, what you will be when it is all over.  The roller coaster will come to a stop, you adjust a few things, wipe the tears out of your eyes, adjust your hair a bit, throw up if you need to, and move on to the next ride.   I am really looking forward to unbuckling my safety belt and running for the fucking door.  This ride sucks, I want off now.

--------I am still me, it's just me with cancer and the changes that come with cancer.  Soon I will be me, just me putting myself back together after cancer.........................then I will be the new me---she is yet to be determined..............but I assume she will be pretty fucking fantastic.

Thursday, November 25, 2010

turkey shmerky

My counts are officially in the "safe" range--so I no longer have to get the pain inducing shots and I went to the oncologist today to get the access to my port taken out (no more tubes!) and I don't have to go in for daily shots and fluids anymore!!!  My body is still in recovery mode and I am waiting for my stomach to get its shit together because I am sick of it hurting--but I feel it just goes with the territory.  All in all my body is on the mend from low counts and my 5th round of chemo....

I am a little disappointed that I don't have champagne and orange juice to look forward to in the morning, and a few other scattered disappointments, but just feeling like getting out of bed makes for a pretty good holiday at this point--beggars can't be choosers.  Of course my crazy husband is doing the Turkey Trot in the morning (and also running a half marathon this weekend in Seattle)--I have yet to determine if I will be witnessing either of these events...........it is cold outside, my bones are already sore and "I have cancer" (it works for everything).  

Thanksgiving brings out the best in people (or so I hear) I think it is a bit funny that only one day a year people take the time to give thanks.......I have always been one of those people.  I was just (or so I thought) too fucking busy to do it any other time....so the one day I would do it, but it is also mixed with family tradition and stress....................I find the champagne and OJ eliminates the stress in most occasions.  I am far from thankful that I have cancer, but I am thankful for the stuff that has fallen through the cracks of cancer....I now take the time for myself and others---I slow down and make the space.  I have been surrounded by love and support and am able to see what was around me when I was too busy to see it before. I have been forced to slow down and have looked fear in the face and was shown a mirror to my own demise....only to give thanks.

I am thankful to be alive and to give a face and voice to what cancer can do to you--and how it can steal you away from your life.  Cancer is busy taking away things in my life...my breasts, my hair, my lymph nodes, fertility, a restful nights sleep...............so I remain thankful for what I have left and what I will create from cancer.

On the eve of the day of thanks I encourage you to not only be thankful but to be thankful to have each day.  My thoughts have narrowed to be thankful for small things, like being able to get out of bed or remain out of the hospital for the holidays.

When life hands you lemons, make lemonade...then find someone life handed vodka to and have a party.

Monday, November 22, 2010

love and other drugs

Allison & I after my 5th round of chemo
"Love and other drugs" is a great movie title, I won't see it because it looks sappy....but I thought it was fitting.....I have lots of love, and could really use some other drugs!  Well... it has been just under 1 week since my 5th round of chemo--and it has been a bitch.  We were hoping to avoid neutropenia and bone pain by switching from Neulasta (one injection that increases bone marrow very quickly and lasts for a long period of time) to Neupogen (a shot given daily for 7-11 days that increases the bone marrow for just 24 hours).  If you remember, with my last chemo I ended up in the hospital with extreme bone pain and on a pain pump with the Neulasta shot. 

Now everything went belly-up and nothing seems to be working as we would have hoped.  I spent a majority of the afternoon/evening yesterday in the ER due to bone pain.  I had been taking pain meds and the bone pain was increasing with every shot and yesterday was too much.  I had a great doctor and nurse--they even gave me the option of going home, which I chose to do after being prescribed morphine in pill form and being good and doped up on IV pain meds and fluids.  I made it through the night at home, but woke up feeling even worse than before.

The problem is really in the numbers...........my blood work at the ER was disappointing, and despite being on the fucking shot that is still causing me a tremendous amount of pain, my white count is 2.3 which means I am good and neutropenic (just like after my 1st chemo when they forgot to give me the shot to begin with!).  So I have no immune system and all the things that go along with that: watery eyes, chest cough, chest pain, mouth sores, thrush, sensitive skin, bone pain and aches all over.  My legs are even sensitive to touch and carrying my rotund ass around isn't making things any easier.

Today I went to my oncologist and they confirmed everything that I found out in the ER, it was decided that I won't be hospitalized unless I spike a fever.  It is too risky to have me in a hospital full of germs when I have no immune system to fight it.  I started an antibiotic today as a precaution, I received fluids and was given more pain medication.  I will be going to the oncologist for the next two days (at the least) to receive fluids, get my counts drawn and get the Neupogen shot.  My concern is that I have been getting the shots since the day after chemo and my counts are still low......................more to come tomorrow from the oncologist.

Life is pretty rough right now. I really thought that we had it all figured out and this time would be the best yet.  I had a reaction during chemo--so I should have got the hint that things weren't hunky dori.  (speaking of hunky dori....my sisters and scott have decided that I look like Bobby Hill from the cartoon King of the Hill.............I reluctantly admit.... that I agree. 

Love your body & change the world.

As least now that I have to be a recluse the weather is cooperating...it is not like I would go anywhere in this weather to begin with.  As shitty as I feel it was nice to sit on the couch with Scott, a fire going, and watching everyone else stuck in this crazy weather.  Tomorrow I have my MUGA scan (the MUGA test involves the introduction of a radioactive marker into the bloodstream of the patient. The patient is subsequently scanned to determine the circulation dynamics of the marker, and hence the blood) to see if the Herceptin has done any damage, then off to the oncologist. 

Fingers crossed that I don't spike a fever. 

Tuesday, November 16, 2010

hello chemo eve, let me shake your hand.

"I let myself be angry, then it turns into the fight for my life"---in my pre-surgery room prior to my bilateral mastectomy
"mirror, mirror on the wall"........I don't recognize my own reflection anymore.  It is a disconnect I was not expecting, I still have my dad's blue eyes and my crazy large lipped smiled.....but there is a desperation and tiredness that is foreign to me.  But my face blends in when thousands of other women who have a story, their own desperation, and their own bloaty breast cancer chemo face..............thousands of women whose story you have yet to hear.
My daddy's blue eyes

Tomorrow is my 5th round of chemo, and last night was my 2nd trip to the ER in the past 3 days.  I am pretty sick of being sick.  There was a possibility of a blood clot in my leg, that still hasn't been ruled out (though we are not too concerned) and I will have a Doppler tomorrow while at chemo to make sure it isn't a clot.  If, on the off chance it is, I will be given an injection to thin my blood and break up the clot so it doesn't have the chance to work its way up to my heart, lungs or brain.

Chemo Eve was great, and Scott is very "relaxed" and already passed out next to me (a bottle plus of wine will do that to you).  I know we try to keep tonight light hearted and fun, but I know tonight is when he starts to worry about what is to come with the next round of chemo---that is what keeps me up tonight watching endless hours of netflix on demand and whatever mind numbing show I can find.  Tomorrow will be a new experience for my friend Allison as well.  I have prepped her as much as I can, as I have anyone who comes to chemo with me--I change during chemo...........I visibly get weak and tired and am not mobile.  The desperation and tiredness I see in the mirror takes over and I am no longer myself............even words are hard to come by--at least any that make sense.  The change can be scary for someone to watch, I also have my port accessed which if you aren't familiar with it can be scary in itself. 

All of this has become such a routine to me that it is really frightening when I start to think about it---that is what tonight is about.  It is the night I let myself go there, I worry, I cry, I scream inside for what I have lost because of cancer.  I get to be the bitter, angry cancer patient that everyone expects (and I am normally far from--I take a light hearted approach because without humor I am naked in this fight; humor is the armour that has got me through life, it is how my family copes in time of crisis and I am a firm believer that laughter can assist in a cure, in treatment, and in life)--but come tomorrow I tuck all the anger away with a pretty bow until the next time.  There is no point in being angry or sad--I need to be in a place of peace and vulnerability during chemo--I ride the waves and let go of control--chemo is powerful and it wins every time.  I admit defeat and brace myself for the after effects.  It wins ONLY because I let it win, I signed up for this shit, I don't need your sympathy, I need your support.  Chemo is a necessary evil.

"Throw dirt on me and grow a wildflower"-lil wayne
As usual I assume I will be out of commission for the next week, crazy drunk on chemo.  I will keep the twitter account that runs to my blog updated with changes.  After tomorrow I have one more chemo scheduled...............I can see the light at the end of the tunnel........I just wish the tunnel wasn't so fucking long.


Sunday, November 14, 2010

sweeter than a swisher

My girls before surgery
 **a couple of semi-graphic photos are posted below

'Do the pretty girl rock'....well I would, if my damn feet would stop going numb!  For the first time in my life I can where my pjs whenever I want, I buy no hair products, I can shower in 5 minutes because I don't need to wash my hair, shave my legs or armpits, I don't wear foundation because I will sweat it off in 5 seconds and I can get away with anything as long as I end with..."well I have cancer."    People go out of there way to tell me I look good (when in reality it looks like I was hit in the face with a bag of quarters and the bags under my eyes are so big I could use them for carry-on luggage).  I resemble my old self, but am more like a distant cousin who could be related but you aren't sure where some of the genes came from---I am not looking "tip-top" but I also am camera crazy!  I want to have pictures of every part of this experience....I never want to forget what I had to experience to come out on the other side of all this shit.

But what am I doing in my head?..........I am bitching and thinking about how I can change everything that I currently am and get "better"--and not "better" like cancer free, I just want to be skinny and have my hair back.  Wow, I guess  my crazy liberal attitude was blindsided by the superficial barbie that invaded my body..........right now I could be mistaken for a husky 6th grade boy or a 6 month pregnant woman--and in case we aren't clear here---I am neither of those.  Those pictures are going to accompany my story and for many of them there are no words.  My experience just glares right through you. 

I am excited, that for the first time in my entire life, I am looking forward to working out (be careful, hell just froze over and my friend Allison's jaw just hit the floor!). Also, I have been told that a bag of skittles every other day isn't "normal".........well I have cancer!  (see it works for everything!)  Tomorrow is my last day of feeling somewhat like my old self before chemo on Tuesday (my 5th round of chemo).........I plan to sleep in, go to a movie during the day with Scott (less germs), my pre-chemo oncology appointment and then our ritual pre-chemo day party (the term I use loosely)--which really consists of some sort of alcohol, Scott and whoever is accompanying us to the following day's chemo (see you tomorrow Allison!) and my sisters if they are free.  I try to keep my mind off of chemo, but then when everyone heads to bed, I remain awake until morning.  I wish I could record the thoughts that run through my head the night before chemo---they make me want to live and want to die---then by the time I think I have everything worked out and I close my eyes, my alarm goes off and it is time to start my pre-meds............it is the most exhausting night of my life--and the irony is I schedule them.

this is what cancer looks like

seconds before being wheeled into surgery

bye, bye boobs--hello pain

first day home after surgery

a few days after surgery

after 4 chemo's I was hospitalized for the 2nd time and given blood


my ER cheerleader (one of my many ER trips)

lots of pain--at oncology before my most recent hospitalization

 IV antibiotics for 5 days last week, me at home with my port accessed--and Lucy

Saturday, November 13, 2010

pieces of the same puzzle

My sisters and I--the ER taxi
After receiving the green light from oncology yesterday (to have chemo Tuesday) I was feeling pretty good. 
That all went to hell when I was sitting on the couch and felt a burp coming on............no one was home so I was going to let out a big, what felt like HUGE, belch.........to my shock and dismay this was no burp, but vomit..........yep.......all over myself while sitting on the couch.  This started a 3 hour puking rally that no meds were able to stop........so you know what that means....a trip to your friendly ER.

Luckily my sisters were in Tacoma and they came by and picked me up.  I enjoy arriving at the ER with an entourage, it makes me feel as "home" as you can in an ER. Scott was still working so he was there and I was greeted by some of my favorite ER employees--including my favorite nurse and doctor.  After 3 IV nausea meds, pain meds, 2 bags of fluid, benadryl, and ativan I was finally feeling okay.  My pulse was higher than normal...pushing 130....the doctor wanted to keep me overnight--not because my pulse was high but he was concerned because I am going through chemo and my best guess is he didn't want me to come right back after heading home.  After he saw that my chest x-ray was clear, my labs looked good and I was feeling better he decided it was okay to release me.  I felt 100% better by the time I got home, and now yesterday is a distant memory, I feel fine.  In fact, I was really productive today so I am quite proud of myself.

My ER entourage

I am guessing that in my normal cycle (if my ovaries weren't currently shriveled up like prunes due to chemo) I would be having PMS right now.  I usually go through a crazy clean-freak few days and today is a prime example. I deep cleaned my fridge, cupboards, pantry, and house over all.  I finally can sit in my living room and feel at peace.........not look around at all the shit I want to get done.  This extra week without chemo has given me the freedom to do laundry and de-clutter some of my random "cancer droppings."  That is what I call the trail of stuff I start and can't finish (it drives Scott crazy) because I get too tired, I throw up, or I just forget what I am doing while I am in the middle of it...chemo brain.

So Tuesday marks my 5th fight with this evil bitch we all call chemo.  I am not looking forward to it, but despite that fact, I have been placing my intention and crossing my fingers that I would be able to get the chemo Tuesday...just one step closer to my 6th and final round.  You can bet your ass I am afraid of what will happen once I get the chemo, but that I will take one day at a time.  For now I will enjoy the serenity of a living room that no longer smells like wet dog, a carpet I can sit on and when I get up my butt no longer resembles some strange stuffed animal, and a kitchen that has counters I would actually eat off of.

As I near (what I am hoping is my final) battle with chemo I look back on the past 5 months and am shocked at the amount of stuff I have been through, not just mentally....but physically.  A battery of tests, surgeries, ER visits, scares, infections, and lack of immune system; bitchy nurses, know-it-all doctors, and surgeons who were absolutely amazing; hearing the words "you have cancer" and passing those words on to those around me......engaging in the fight for my life......I will never be the same, my family will never be the same.......and my body is far from anything I can recognize.  But I am alive and still kicking........and let me tell you, I can deliver quite a wallop---those "birthing" hips I have can also function as a steady ground to kick your ass.  I have develop bonds with people who dove into the trenches to be beside me--instilled a since of unity in friendships I have had since childhood, and opened my eyes to a community of people who treated me like family.

Life as I knew it no longer exists..........remnants lay here and there, but picking up the pieces and creating something knew is in my very near future...........I am looking forward to what I can mend, and what I will recreate all together.

Thursday, November 11, 2010

Chemo can't defeat me.

Today was my fourth IV antibiotic round and there is still no change in my boob.  Tomorrow after my 5th round of IV antibiotics, I meet with the oncologist to decide if I need to continue through the weekend, and I am hoping to get a straight answer regarding chemo on Tuesday if my boob remains unchanged.  I have had two rounds of pill antibiotics and now this round of IV antibiotics--all with no improvement or change......so we will see. 

I want to share something that was given to me at my 'Chemo Sucks, Parties Don't' party I had prior to starting chemo.  I have it on my mantle and look at it daily, today it resonated with me and brought tears to my eyes and put a huge smile on my face.  It was written by Jennifer Weston, a doula friend of mine and it is amazing and powerful---and extremely accurate.

(for Dori, the fighter.)

"Out! Out! Damn spot! Be gone with you!" said the brave young fighter
Rising to the taunting of the raging beast inside her.
"You think I'll shrink from this fight? You think that you can beat me?
It's gunna take a whole lot more than chemo to defeat me!
My breast are not the soul of me, though they were soft and pretty
And though I'll mourn their loss, the rest of me is tough and gritty.
I'll take you on, you sonofabitch, you parasite called cancer
And in this fight I may get bruised, but you? You stand no chance, sir!
You ask me why I'm smiling, and I answer, being candid,
"Because I know something you don't know! I am not left handed!"
It may look like you're winning. True, I may puke and loose my curls
But I have some secret weapons in my arsenal....my girls!
Tough women that surround me with their love and healing hope
Will make the strands that strangle you! Around your neck? Their rope.
They cry with me, they laugh with me, they calmly hold the space
From their presence I draw the strength, to spit right in your face.
Standing by my side, and in my heart? My love! My Knight!
When you take me on, you can bet your ass, it's also him you fight.
When I am weak, he'll stand for me, He's my personal Gatorade
Replenishing the strength I need to kick your ass if I start to fade.
So lets get to it! Do your thing. Just try to take me down!
I think you may just find yourself laid flat out on the ground.
See, the only way for you to claim your victory when this fight ends
Is for you to crush my spirit, and that WILL NOT happen friend!
True my boobs are gone, and though the surgeries are a drag
When reconstruction is finally done...Bionic boobs don't sag!
And when you take my hair, well, then I won't have to shave my calves.
(See, to beat you I choose to focus not on my "have nots" but "have's")
And I'll write it down and send it out so others see my pain
If I can touch one other soul, then I'll count it all as gain.
You may have thought that with one blow, I'd run and hide my head
But all you did was show me all the blessings I hold instead.
So if I we're you I'd wave a flag of white and run like hell
Because you're going down, asshole, each and every cell!"

With all that said, the fighter turned and smiled at the sky above.
Walked into the circle of her tribe, into their light and love.

They linked their hands and hearts, and then with one voice a might roar they cried
'You may have won a battle,
but you WILL NOT win this war!!"

Wednesday, November 10, 2010

oh shit, my glass is empty

Today was day 3 of IV antibiotics in the sad chemo room--still no change in my boob.  It has been refreshing to not have chemo this week, last night instead of being in my drunken chemo state I had game night with Scott and my sisters.  I am not what you call a good loser, or a good winner for that matter.  I am a bit of a control freak and games are no exception.  Scott calls me crazy (again, not sure when he will understand that it has lost its effectiveness) and he wishes I would relax and just be able to play games.  I am a board flipper and I get annoyed when games move slowly. I like fast paced everything............I know, I need to slow down.

My right arm has began to ache so bad I don't even want to walk, it is kind of hit and miss and no amount of lymphedemic massage seems to help.  Even when I reach for the percocet it doesn't do the trick, just leaves me with a nasty headache and mild comfort for awhile.  My panicky control freak side (as Scott would like to call it, my 'crazy' side) is convinced my arm is going to get very large and I will no longer be able to write with my right hand..........my logical side thinks that if I do have an infection in my right boob my lymph nodes on that side are working their asses of and the pain is a result because with some of them missing, they just don't work so well as a team anymore.

I have been missing home a lot.  The out pouring of support and contact with long lost friends has made me both nostalgic and wanting to visit really bad.  I can't visit because I am on daily IV antibiotics, or it's flu season, or I am nauseous, or I am in the hospital.........so until chemo is done the closest I can get is listening to the country station on the radio--it's driving Scott crazy in the car.  I don't just miss Okanogan and the people, I miss simple times.  I miss shitty beer and camping in cars in the middle of a wheat field.  I am all nostalgic about lots of stuff lately, and teary too--probably due to lack of sleep, chemo brain, and lots of time on my hands. 

I loved where my life was before cancer......I don't like the cancer detour and the worry about getting back on track once the detour is over.....it's fucking scary.  Many things have happened since my diagnosis that never would have happened otherwise, for those things I am thankful.  I have reconnected with great friends, started the blog where I have been able to give an open-book view of cancer and am learning more about myself than I care to admit.  I have had things taken away that I will never get back, a few more obvious than others..........breasts, nipples, trust in my body, and an understanding of how I thought my life was going to go.

I feel as if my future is dicey and my plans are no longer concrete.  I find myself second guessing things I was sure of just six months ago--having children, a PhD program, breastfeeding, living past 35, being healthy.  I keep returning to the thought that my body has turned on me, that if I can't trust my body where can I put my trust?  It shakes my foundation and I don't like to be rocked.  I am not a religious person, I feel that if I was it would be easy to put everything into faith (I have faith in relationships and that things happen for a reason) and not take ownership of what I am feeling and doing about all this cancer business.  That is what it is, a business--we are partners now, cancer and I--definitely a give and take relationship.  Personally, I feel cancer takes too fucking much, but we are working on it.  I will have this "dark passenger" (thank you Dexter) for the rest of my life. I will have to have tests and scans for as long as I live--there is always a chance that my body will turn on me again--no matter how healthy I am, how far I run, how much I work out, how well I eat.......

But what keeps me up at night is the fact that I won't know when or if it will happen.  When I think about future plans I feel selfish. I feel selfish for asking for support, for eating skittles ("sugar causes cancer"), for wanting to have children--not knowing how long I will be around to raise them. I feel selfish for having Scott at my side through everything, not knowing if I will be around to support him in the future.  I worry my life will be cut short by this horrible disease and I will be jaded in the end.  I worry that my stage 3 will become stage 4 and after numerous treatments I will give up. 

"Live life like everyday is your last" has a new meaning, but lets be honest...it is very unrealistic.  If anything I will work on balance in my life and enjoying things more.  I don't take anything sitting down and cancer is no exception, life just has a different taste now and it is going to take some getting used to.

Tuesday, November 9, 2010

make you smile and break your heart

Scott & I at the retreat
Tonight should be my 5th chemo eve.............but unfortunately it is not.  I spent the weekend at Harmony Hill at an ayurvedic retreat with Scott.  I went into it a little worried..........we all know I am hard to handle at times............but it was brilliant.  It was a place of healing, something I haven't experienced before.  Many people think that hospitals are a place of healing..........I won't even go into that.......but after my stays in the hospital I needed this.  Not only was the setting healing, but the people who I spent the weekend with were amazing--each individual story and experience brought together under one roof, all concentrated on wellness was astonishing.  I got much needed, uninterrupted rest.........and Scott won the game of musical chairs.
Harmony Hill

I packed my diet coke and skittles for this wellness weekend, knowing that the food was mostly vegetarian and good for you (so my naughty habits would be frowned upon, and definitely not catered to).  I like candy just like the average person, but since I have been diagnosed with cancer I crave skittles and jelly bellies........I know the 'sugar feeds cancer' research and that these may not be the most healthy decisions for me.  But I already have cancer and skittles make me happy, done and done.  I have promised myself that once chemo is done I will taper down my skittle intake.  It's not like I am eating bags and bags, just a bag every other day or so on my good weeks--perfectly innocent.  Or at least that is what I am telling myself.  Just give me my fix and no one gets hurt.

Life has a funny way of holding up a mirror and forcing you to look at yourself.  Apparently I wasn't looking hard enough before and it had to throw cancer in the mix so I would pay attention.  I ran myself ragged and piled on commitments.  I thrive on being busy and jam packed, but my health was suffering.  I would mow people and relationships over with other commitments and never fully commit to anything.  On the scale of bad things to do to yourself that make skittles look innocent.  Now I have been forced to slow down, my commitments are few and far between--I am unable to make plans because I don't know how I will feel when I wake up in the morning.  For the first time I am not in school, not working and with all this free time I have been forced to look in the mirror.  I have learned the hard way that as fiercely independent as I am, it is important to rely on others and ask for help at times................you can't do everything alone.

There is no eloquent way to be a cancer patient.  I am thankful for my sense of humor and the relationship I have with friends and family.  I am not an angry cancer patient, I am not bitter, and I don't think I am being punished.  But I will tell you what I think, I am raw and write what I experience--and it isn't always kittens and rainbows.  Your life is turned upside down.  Nothing I do is simple, including cancer and my treatment....I am in and out of the hospital, I get extreme side effects, random infections, etc....today I told my oncologist that I just "like to make things complicated" he giggled, probably because he agrees and wishes I would cut that shit out.........I wish I could, but my body now has a mind of its own...no one talked to me before I got cancer.

I was hoping that the wellness weekend would help get rid of the infection in my boob--kind of hold hands with the antibiotics, no such luck.  I am now on IV antibiotics everyday this week.  That means that I go into the oncologist and sit for 45 minutes while the antibiotics go into my port.  My port is accessed and will remain that way all week........so I have the tubing all taped up........I definitely got more looks than normal at dinner tonight...... So chemo gets pushed back to next Tuesday (if all goes well), not what I was hoping for but shit happens.  If I have learned anything it is that I have control of nothing when it comes to cancer...........free like a weed.

Thursday, November 4, 2010

"you fancy huh?"

Halloween 2010

Waiting in line at Rite Aide (after dropping off my many pre-chemo prescriptions) I was buying beer and skittles.............I know, shocking!  I was wearing my pink SURVIVOR bracelet..................
Employee: "Your bracelet says survivor, did you have breast cancer?"
Me: "I do, I am going to through chemo now"
Employee: "So you aren't a survivor yet."
Me: "I am planning ahead"
Employee: "With beer?"
Me: "I am being celebratory." (as I hit her with the 12 pack............just kidding)

(I was also buying beer because my sisters were coming over, I am not a big drinker with chemo and all, a few, but that really isn't the point is it?)

So..................................sometimes.........................I am too much for some people to handle...........I know, that just blew your mind!  If you are reading this something strikes your fancy, you know me, you have cancer, you don't want to have cancer, you know Scott or my family, you like grit and sass, and I am sure there are lots of other reasons....but whatever draws you here, you either stay or your don't.  You vote for the underdog and like the grit--you want to be told the truth and enjoy the stories---you keep checking in---I love it!!!!  I can't explain the feeling of knowing that when I type something, when I am having a shitty day, or if I am finally feeling normal again--whatever it is I can write it and know that others will experience it and share in my emotions.  I am not alone, even when I am alone.

This weekend I am going to an Ayurvedic Retreat.  I am pretty excited (Scott has graciously agreed to come with me---it may not be his thing, it isn't mine either.........but they have hikes and trees and he can run around being all athletic, like he likes to do) so I don't feel bad.  I may be excited now, but a few days ago I was ready to book a ticket to Vegas--go drink tequila and play penny slots--just let the lights and sounds distract me and forget all that is going on. 

I was quickly snapped back to reality when I found a small lump in my armpit while in the shower.  I immediately got hysterical, sat down in the shower and cried, unable to breathe.  My mind races and I think that "I have a new spot of cancer, I have this crazy cancer that can grow when I am going through chemo.............I am going to die."  After a lorazepam and talking to both my sisters I stopped the tears.  I then saw Scott and he told me I was crazy (which he tells me pretty much daily so I wasn't too impressed). 

I saw my oncologist today and I couldn't find the damn lump to show him............he tells me not to worry about it because it is on the same side as my infected boob, he is sure it is a lymph node reacting to the infection--I am sure he is right.  I am now rational and agree..............and today my arm on that side has become extremely sore....another nod to the infection.

So I head off at the crack ass of dawn tomorrow (I think it is like 9am............but when I don't fall asleep until 7am, 9am is early) to go a retreat center for a relaxing weekend with my hubby.  I am sure I will have a case of the church giggles (you know when you begin to laugh inappropriately at something............thank you Kathy Griffin) at a seminar or something......I hope there is Internet so I can watch trashy TV online and blog if I feel like taking my own "relaxation" time.  Scott and I had to ask today if we had to share rooms (like with other people) because I can't do that.  When I get tired I am like a really cranky bear that needs to be put down STAT--the last thing I want to do is have to make nice with a roommate..........I'll cut a bitch.....and lucky for me the only person I have to share the room with is Scott........

I still have an infected implant and am checking my temperature every 2 hours, any spikes I will head straight to the ER at the closest hospital.  My oncologist said if my boob looks the same on Monday they will delay chemo at a minimum one week.  I am on a second antibiotic so hopefully that makes a difference.

Enjoy your weekend.  Cheers!

Monday, November 1, 2010

don't be fancy, just be dancey

Kristi & I--Halloween
Fear makes people do terrible things.  Unfortunately for many people a diagnosis leads to fear, which leads to isolation, which leads to nothing good.  I have had my moments of locking myself in the bathroom, sitting on the floor and crying with the radio up really loud.  I have taken solace in the shower where I am completely alone and sometimes I break into a fit of tears while watching TV by myself.........even if it is Jersey Shore or a real housewife (sometimes I watch good TV.......but there is just so much bad TV).  When you are faced with something that can seem insurmountable your emotions are on the surface.  Sometimes I feel more like I have PMS than cancer---I can plow through a bag of candy and a box of kleenex in seconds.....either a world record or a fucking great You Tube video.... 

Being a therapist I am fascinated by emotions, feeling myself get to the brink of out of control is just as fascinating--only because I am lucky enough to have the support system that has created a rope that sits around my waist......so I am dangling off the cliff.........but won't drop. Thank you.

And I don't just have a support network here...............I have an extended support network in my hometown.  People from the "city" don't have that--I am convinced.  I am blown away by what Okanogan has done for me and my family........but Scott is shocked.  He grew up in Spokane and there just isn't the same type of "community" there.  From a spaghetti feed to a high school dance (and so much in between) they have jumped in with both feet and supported me.   There is no way to payback this amount of generosity and kindness---just to pay it forward.  And that is our plan--once I am healthy and the bills are gone......fundraising and being involved with Bouncin' for Boobies and other amazing people will be a large portion of my life. done and done--there is nothing like a hometown with motivation=community.

Greenaway girls Halloween

My recent stay in the hospital behind me, I am feeling better.  I am still tired, bloaty, and my stomach can turn on a dime........but I am out of the hospital so I will take what I can get.  My oncologist told me "we just don't know what to do with you" in regards to my next two rounds of chemo--not the most inspiring words, but at least we are on the same page.  I am scared for what is to come, it continues to get worse each time....I am the UFC fighter that keeps getting up, even though I should lay my ass down.  I don't have the choice to lay down..........so I keep getting up, and getting hit, it fucking hurts. 

I dressed up as a cancer patient for Halloween this year....I know, I know

The plan is to give me the neupogen shots rather than the neulasta shot---though the side effects for the drugs are identical.  Neupogen shots are given in smaller doses (I received these shots when I was hospitalized the first time, when I wasn't given the neulasta shot and my ANC was non-existent).   I had bone pain at the hospital the first time, but it wasn't anything compared to this last time..............so we will see.  Really there isn't a good way to handle this....I vote for a shit-pot of THC and morphine, but I doubt that will happen--hospitals are dirty, dirty places, and both my oncologist and I want me to stay as far away from them as possible--they are used as a last resort (2 out of 4 aren't the best odds...........)

I am going to celebrate the hell out of New Years this year--because 2011 has nothing on this year....well anything has to be better than finding out you have cancer..........right?

You bet your ass.