Friday, August 8, 2014

I'm all in double-down no fear.

Scott & I ready to check-in and yes, he wears pink for his wife.
My Gamma Knife (GK) day was just a few short days ago and today was my first real breakdown.  The combination of pain, pressure, nausea, fear, anticipation and tears finally exploded--for a minute I was thinking maybe I would keep a lid on the scream and cry until snot fills your mouth tears, the fits of shaking and ugly crying where you literally have to laugh at yourself because you don't know how else to stop the tears. Welcome to my evening. Luckily, the only one here to see me ugly cry is Lucy--and she knows better than to say anything. 

It is strange because somewhere in the back of my mind I have this fear that if I cry too much, or stress too much Lolli will get worse.........as if all of a sudden I ugly cry and my head will explode. Ahh, the images you can create in the depths of your own mind.  That's the thing, it is in my mind. It isn't a tumor in my breast, it isn't in a bone, it is in my mother fucking brain....I still can't grasp it. I am not sure if I ever will, it is just too unreal, too abstract for me to wrap my thoughts around it. So I continue to transition from "I got this" to "how the hell did I get here."  It is a slippery slope. 

Lolli with "brain death" outlined, yellow will die and green could possibly

thin slicing of my brain MRI to help coordinate the Gamma Knife

thin slicing of Lolli via my MRI for perfection!


Recovery/treatment is no longer a cut and dry formula; just a few options and we hope they work, that is a strange type of limbo to be in. GK was much better than I expected.  The staff was incredible and my anesthesiologist was the best EVER. I was able to be put under general anesthesia and my family was able to come back, while I was under to take photos of me with the metal cage. The downside to this is they saw me very vulnerable and "asleep" with a breathing tube. The video is a mixture of laughter and tears--I wouldn't expect anything less.  The anesthesiologist had never had someone request that their family come to take photos with them while they were asleep.....he agreed it was okay, but insisted he took the tape off my eyes (then put it back on once they left) because that would make the photo "just too creepy."  In recovery I asked how my family did with photos and he told me they were "cry-babies and then pulled it together"--I truly did have a dream team. When I looked through the photos afterwards all I saw was Scott holding my hand....there I was unaware of anything and he was still right there, just in case. There aren't words for the feelings that image brings up in my heart, me so helpless and him right there smiling through tears because his wife is a nut job who wants photos of a metal cage on her head.......

always by my side.

come on in, general anesthesia for everyone!!

smiling through tears, me with a cage drilled into my skull--you thought your Monday was rough...

Tuesday begins the next steps in taking care of Lolli. There are drugs to figure out, infusions to have, seizures to avoid, ovaries to remove and a port to put back in. I am taking it 8 hours at a time. I keep the swelling at bay every 8 hours with steroids. I will then take it every 12 hours, then every 24. I am staying as in tune with my body as I can. I keep track of weird twinges, numbness, extra swelling, blurred vision, blah, blah, blah. I am trying to relax, trying to relish in the fact that I am here. 

Once again I find myself in a place of wonder.  The support and "dielollidie" cheerleaders are in my corner. I know that I alone don't have the strength I would need to keep this fight going. That without the love, strength, and support of others I would waiver. Instead I am held strong and rooted to all of you. From the core of who I am I want to say thank you. I couldn't imagine being on this journey alone, together I feel I have a chance...or at least the opportunity for one hell of a ride.

"You sip your water, I'll drink my beer."-Lee Brice

Saturday, August 2, 2014

lettin' the cat out of the bag, cancer in my brain.

meet Lolli, my brain tumor.
I have been waiting for something big to happen to kick my ass into gear to blog again....I guess I really should have thought that through. You know how I tend to go all in? I really should rethink that mantra, the whole balls - to - the - wall mentality....holy shit, I just thought about how crazy my life would be if I actually had balls....

But I don't have balls, I have lolli. Let me make the introduction for you. About 1am last Friday morning, one week ago, was my first introduction to lolli. I was minding my own business going to the bathroom when out of nowhere my right arm and leg began to seize and I couldn't control either of them. I was unable to tell up from down or what was the floor or ceiling. I was able to yell and wake up Scott and even with him helping me I couldn't figure out how to move my leg to walk. He sat me down on the floor and after 5 minutes or so it stopped. My right side was heavy and achy but I was able to get up and lay in bed. We discussed options and went to the trusted Google and I self-diagnosed myself with a mini - stroke,  which I could deal with later (I was exhausted). So I went to sleep.  It wasn't until the morning I realized how scary it was, my right side still was sore and weak so after some calls it was decided to head to the ER.  Before Scott was able to make it home it happened again...this time I knew I was in trouble.
We made it to our family at the ER and were so thankful to see the faces of our friends who have been through this shit pile with us. After tests and tears we were told there was no brain bleed, but there was a brain tumor...
another pic of Lolli

Yep, this 1 inch bitch named lolli in the left side of my brain sitting and putting pressure on motor function for the right side of my body (why I had the seizures). After a transfer to UW I met my team and got started wrapping my swollen brain around the news. There were large doses of anti-seizure meds and steroids and neurosurgeons and an incredible staff. After tons of work ups and planning I was able to be discharged Sunday night.
So, it has been one week. In one week I have been told, once again, my life is about to get more.....interesting? I don't know what else to call it... The cut and dry is that there is a fucking tumor in my brain. Cancer gave me cancer and it fucking sucks. We don't know if it was a cell that broke loose when all of this started 4 years ago and has been growing ever since, or if it is new. There isn't any way to know for sure, but what we do know is it is there and it is now in play. I now officially have metastatic disease, the last- (whatever length of life I have left)- long stage of breast cancer. Did I mention I am 30?!
So down the rabbit hole we go, a little different route,  but we stay the course and kick as much ass as possible in the process. My emotions and reactions have surprised me, I am still numb, but not overwhelmed.  I am living my life and going to soak up giggles, sarcasm, booze, sun, love and happiness. I need to feel sorry for myself like I need a tumor in my brain...

It is safe to say that right now isn't the end. It is also honest to say that it could be much closer than we ever would have thought. We have a plan. My tumor is a fit for a radiation procedure called Gamma Knife. Google it (it is freaky shit). It is also an amazingly accurate and targeted approach to shrinking the tumor. I will be going in Monday for the Gamma knife radiation surgery. I will have a barbaric (but lightweight) metal frame drilled into my head in 4 places. I will have another MRI and my neurosurgeon,  physicist,  radiation oncologist and anesthesiologist will be my team. The whole thing lasts 4 or so hours, including wait time. Mostly after the MRI the team gets together and creates the plan where 190-something radiation beams will all meet up to target just the tumor - saving the rest of my brain....it truly is remarkable.  This option also leaves further treatment open, I can do the Gamma Knife more than once if needed (versus full brain radiation which you can only do once and honestly is not an option I will consider for the future). Surgery isn't an option for me either,  where Lolli is, they would have to remove a good inch of my brain to remove her, doing much more harm than good. So... this is what we do. I am coming for ya Lolli, me and the Gamma knife!!! (see gamma knife images at end of post)

Post Monday I will have more swelling in my brain and increased risk of more seizures. I get to go home same day and recover which puts me a bit more at ease. The week or so after will be rough and we don't know how Lolli will react. There is a 10% chance she will actually get bigger and that changes things, this can happen months after the treatment. I will have another MRI a month from Monday to see how the swelling and tumor look.
the white around the tumor shows the swelling in my brain

August 12th I will be at Seattle Cancer Care to start another Hercepton infusion (a targeted chemo drug that I did a year of for my first round). The side effects are much less than a full battery of chemo cocktails and I actually managed it okay in the past. I will also be starting an oral chemo drug that has shown promising results in crossing the blood/brain barrier.  And last but not least I will get a shot to suppress my ovaries.  I will then be scheduled for surgery to have my ovaries removed--I get to keep my uterus....a memento of sorts for all my lady part bullshit. I just realized that read like I am keeping it in a jar HA, I get to keep it in my body...a safer and less complicated surgery.
So that is the just of it. Now I can begin my harsh and uncomfortable tumor jokes and random updates and Tweets. You know the deal, I say fuck a lot, I tell the truth, I try for a little grace under pressure. Welcome aboard, once again, to this rollercoaster. This one is going to be a nail biter for sure.

Tomorrow I buy new pillows.  A lady with a tumor in her brain should be able to sleep on a cloud.
Cheers.

this is the neurosurgeons drawing of Gamma Knife radiation while I was in the hospital--see how happy I am?!
This is the metal frame that will be put on and then also removed the same day, this Image is from: http://3.bp.blogspot.com/-ya9R7JixeGE/UOS7F2tz3EI/AAAAAAAAElU/n1PSHX_4RGg/s1600/IMG_1335.JPG

Wednesday, May 29, 2013

boob tube

I just heard double-chins were in......

I know, I know....it has been  awhile and yes I feel guilty and yes I wish I would see you all more--I keep promising, and breaking those promises....I will work on it............"I promise."

But truly I want to write more, I need to get my fat ass in gear and work on a book, I think that process will put my healing on a whole other level--a welcomed change.  There is so much to catch you all up on, but alas that will have to wait. I will let you know that I walked an amazing runway show with amazing survivors and had a great (and extremely sweaty) time--chub, quick changes, hot lights and cramming lots of women in an upstairs room with no open windows=dori looking like someone dumped a bucket of water on her head...though totally worth it. My best friend Luke got married to an amazing woman and I felt good enough to attend the rehearsal, do some hair and makeup and the wedding without napping=amazing.  And you should be proud--I have tried on pants AND managed to keep pants on, I am a tricky bitch, but honestly it only takes one time of showing your granny pants to a Target dressing room attendant to remember to look down before you open the fucking door.....

On a health note, we have a few updates. A few weeks ago I had gotten to the point where I was SO exhausted during the day I would be awake only a few hours and then need to sleep (for most of the day) and then head back to bed. My naturopath switched stuff up but I still wasn't feeling right, she told me my thyroid was swollen. I have enormous faith in her--she brought me back from one of the scariest health places I had been since cancer, so I took her information to heart. I had to work a weekend workshop and made it, but went in the next week to have my blood drawn. My primary doc (who I officially think is a jack ass) laughed when I told him my naturopath's concerns and also said he would check my blood for diabetes and I QUOTE "maybe that will scare the fat off you."  If I hadn't been so tired I would have slapped him with the blood pressure cuff.  How fucking dare him, I am sorry dear doctor that the last year was one of the hardest for me mentally and my depression got pretty bad and I slept a lot (worked out........hardly at all) and cried. Yep, my body took the toll, but lets just keep the fat jokes to yourself....the lady at Target saw me half-clothed and all she did was tell me I wasn't wearing pants...she kept the jokes to herself, you should follow suit. But the joke is on him, my labs came back that I have hypothyroidism (which can explain the tiredness and a majority of the ache/pains, and weight gain). I saw a specialist and I am now on meds--we are waiting to get the right dose, but so far, so good. Once again my naturopath was able to point me in the direction of "healthy" God love that woman!

The newest body update starts tomorrow, I check-in for surgery at 10:15am at UW. Scott and I had an intense meeting with my plastic surgeon (who I love) where he tried to convince us both that major surgery was really the way to go and that I should consider that option--which before my infection Scott and I thought was an option. But after discussing we have decided that we aren't ready for a hospital stay, and my poor, poor body needs a fucking break. So we are opting for the least invasive option (less time under anesthesia and I get to go home the same day). I am going to have some fat sucked out of my belly and put into my boob sacks (it is called fat grafting).  I have been working on my pitch to my doc for tomorrow--he needs to understand that the smaller my belly is the bigger my boobs will look.....

Another chapter starts. I am just hoping I remember to keep my pants on.......

Wednesday, April 10, 2013

ain't that a bitch.



beauty.
weddings.
scars.
swollen legs.
lack of boobs.
open sores on arms.
open sores on legs.
chubby.
chub rub.
fat.
sweaty.
super pale (like see-through).
yellow teeth (thanks chemo).
tattoo peeling off color.
cavernous cellulite.
double (triple if I smile) chins.
ridged nails (thanks chemo).


 So you know what this girl is going to do about it?  Walk the runway at the Northwest Hope and Healing Fashion Show (again). suck it cancer. 

Thursday, March 21, 2013

Celebration of Life

I have talked a lot about my friends and family on my blog, and the caregivers and docs that I have had.  Today, and on every March 21 (since 2007) I need and want to talk about my dad. People tell me that the reason my dad and I didn't always see "eye-to-eye" is because we were very similar. We didn't take any shit from anyone, cursed like sailors, may not start the fight--but would put an end to it, we also cared for our family and knew that family came first--always.  Unfortunately for my father I was a bit rebellious (to put it mildly) through my high school and undergraduate years at Western.  I grew up a country girl and still consider myself to be that, family comes first, 4 stations are programmed to country radio, I wouldn't start a fight but I would sure as hell finish it, and my mom is my best friend.  My father got to witness me change from a rebellious teenager to a stable adult, and that is something I am thankful for everyday.

When we lost my dad, it was the hardest experience for us Greenaway Girls.  We bonded instantly more than we had and I am happy to say that out of the tragedy of my dads death my mom, sisters and I became a pretty tight knit group of wise-ass women.  It is genetics, but it also could have been that first Christmas where we drank beer for days and watched all the Harry Potter movies, bonding comes in mysterious ways.

You always knew where you stood with my dad. Everything was black or white, grounded/not grounded, etc... He would follow you to the moon and back to encourage you, or give you a look that could make you run like hell to discourage you.  I want to thank him for helping put together the woman I am today. My thick skin and rowdy sense of humor, my ability to jump into any verbal argument and think I am winning, understanding the importance of small town, community, and taking care of family, and that even though I was born a girl, I can watch sports, cuss like a sailor, stand up for myself, and always, always stand up for others.

My dad used to write little poems to my mom, and my sisters and I (like in the yearbook for high school, or in a card) so we wrote one for his obituary in the paper. We aren't funeral people,we are celebration of life people. So today, on the anniversary of his passing, I want to share with you all the poem us 4 Greenaway Girls wrote--we have carried on the poem tradition in wedding speeches as well:

January 5, 1950-March 21, 2007
Rick Greenaway grew up an Okanogan hometown boy,
His family and friends was what he enjoyed.

Rick spent all of his life loving his country,
In work, and in play, and as an MP in the army.

We'll remember him patriotic, hardworking, loving and stern,
He taught us so much, but with so much more to learn.

Rick, a Tri-Chevy fanatic his entire life,
Traveling to car shows with his girls and his wife.

He spent time in the shop, working and building all sorts of things,
And always taking time to work on school projects and letting us girls spread our wings.

He loved watching the Speed Channel, NASCAR and football,
But going to Las Vegas Speedway, was his favorite of all.

His preferred place to be (away from Malott):
The goose cabin with his friends, hunting and playing and eating a lot.

His hair turned gray with a wife, three girls and no son,
But he taught us to work hard "Heads down, butts up, and carry on."

No father of three could have been prouder,
To have girls that "think for themselves" and speak even louder.

Monday, February 18, 2013

Bye-Bye Mold!!

Hi all!!! This is last minute and it is a bit crazy, but our small bathrooms have been overrun with mold. As a result, we need to remove EVERYTHING from our bathrooms. We are fortunate enough to have the labor volunteered, but we still need assistance. We would appreciate any financial support. You can click on the link below to help us by donating. The volunteers that are helping us with labor are available this coming weekend, which means we are in a bit of a rush....  



help!!

Thursday, December 6, 2012

Well how the hell are ya?

my baby girl Lucy
I know, I know, we have been apart much too long. After the first month went by, I just kept pushing writing further and further away--which is literally taking away part of my healing process, so you can imagine the space I have been in for the past few months.  I will try to remember things that have transpired to get you up to date, and then I will tell you a story....

After the surgery that I thought was going to be the beginning of the healing process (read: boob sacks) I was doing good. I actually traveled the day after surgery (probably not my best idea) to Scott's high school reunion. My incisions didn't hurt, I had drains in on both sides so I stuck those grenades in my bra and I can't lie, my rack looked good. I did a lot of sleeping and lots of water drinking and actually the trip was great, we got to see friends and family and we weren't in a hospital!! I also attending a wonderful wedding and birthday party with my drains as boobs--if it wasn't for my swollen face and belly from all the fluid, you probably wouldn't even question what was going on in my chest. But lets tell the whole truth....I may have had a glass+ of champagne and was taking out my "boobs" to show my friends. 

me showing drains....and getting a LOT of antibiotics

In my last post I showed you a picture of how I looked. No biggie. But then things got worse, very, very, very fast. A few weeks after surgery I started to get sweaty and really tired. My right skin sack (the radiation side) was starting to look weird and get hard in spots and in one spot it sucked in a inch long hole in the middle of my boob. It started to get hot (warning! warning!) and I started to go downhill FAST. The day after I noticed the inch long hole I spiked a 103 fever and was seeing spots. I couldn't hold my head up and I felt like I had been run over by a truck...........a semi-truck.  So Scott rushed me to the ER, I called my plastic surgeon and he advised me to request a transport via ambulance to UW (where my new surgeon lives).  So we went to the ER and my fever had gotten higher and the nurses who know me so well said "you should have came in sooner" (and I agreed...at this point I know my body pretty well as soon as I started to not feel so hot I should have went.....but I also panic about crazy things all the time, which then drives Scott crazy, in turn driving me crazy times 2..........so I choose my "we need to go to the ER" until we can both deem it necessary and it is not because I was on Web MD all day.  By the time we got to the ER my boob was huge it was swollen and bright red and it was really painful. They pumped me will fluids and pain medication and I spent the night in the ER until they made room for me at UW. 

took them awhile to find a vein upon arrival at UW

When they finally made room in the hospital we were told that Scott couldn't ride with me in the ambulance. You have to be fucking kidding me! I am sure I yelled that through my drug induced slow, slurred speech. Scott said he would drive up, they said they weren't sure if he would be able to stay in my room, read previous fucking kidding me speech. So we decided that because I was exhausted and he was exhausted he would stay home and come early in the morning. And guess what?! When I got to the hospital the room was HUGE and they had a bed brought in for my companion.................FUCK. 

my companion began to wipe down the room as soon as he arrived

My 6 day stay at UW went something like this: wow, ewww, look at that, would mind if our interns take a look at this?, 2 biopsies on my right arm (you know, that arm that I can't even have my blood pressure taken on, sure cut the shit out of it, I bet it will go well.....) more antibiotics than once person should be on in their lifetime, they weren't sure what was causing the cellulitous and infection so they had me on everything at once, when they finally found the bacteria that was causing the infection I was switched to just one really, really strong antibiotic. My boob still needed two drains, but it was starting to hurt less and look better. When I was released they gave me more antibiotics to take, at that point I had been on some sort of antibiotics since June-no joke.

Me wandering around at UW, not sure if you are supposed to, but Scott and I took many adventures like this

So here I am at home after maybe 10 total hours of sleep after my 6 day stint in the UW joint and Scott and I were stunned. We didn't see this coming at all, another hospital stay?! WHAT?!!! It took us awhile to recuperate. Scott had taken the time off work and stayed with me in the hospital. But I am a hard patient....pain medication makes me crazy and paranoid, so I didn't sleep at all, I talked nonsense and Scott can only handle so much crazy (he went on a lot of runs).  So we were back to having hospital stays and ER trips looming over our heads again--we had just gotten rid of them....

Me and Lucy finally sleeping after 6 days, it was amazing to be in my own bed


After I recouped from the UW business I started to see my belly swelling and having some pretty crazy GI stuff go on (I may or may not have "broke" 2 toilets at a friends house).  Things were coming out of nowhere, I would wake up and feel fine, then that afternoon I would spend on the toilet. One day my jeans would fit and I could make it to the 3rd notch on the belt, the next day there was like 2 inches between the button and the button hole (and no I didn't put them in the dryer). My stomach continued to grow and I felt swollen everywhere (still do) and the pain and bathroom crap (HA) was too much. I went to see my gastroenterologist, he said that because I had been on antibiotics for 4 months straight (and high doses) my GI track had no good bacteria.........................results in an infection of sorts that my body just doesn't know what to do. So he put me on another antibiotic that kills bad bacteria and helps good bacteria grow--I just finished it two days ago, so lets keep our fingers crossed that I don't spend Christmas on the toilet.

Whew....there were lots of great things that happened since I wrote last--I will write and show pictures in my next post. But here is a little taste of what I have been going through.....this experience happened to me just yesterday............

My first question is this: Why do stores fold their jeans and put the big sizes at the bottom (I have gained about 20lbs with the GI stuff and being immobile for awhile)? Seriously....my chubby ass doesn't need to try to balance on my feet, keep my purse together and teeter-totter. I don't need to rock back and forth and try not to fall backwards onto some skinny bitch looking at the size 0 on the rack behind me, the small sizes should be on the bottom, those girls can balance just fine. I want my sizes at eye level--ridiculous! So because of the weight gain my jeans don't fit every day, some days my belly isn't swollen, others it looks like if I squatted down to look at jeans I would pop out twins. So I went to buy pants at the local Target (I know, I know, big spender!) I had about 20 pairs of pants....I had no clue what size I was and if my belly was going to cooperate. The first 6 were a no go, I brought them out to the lady and exchanged them for the next 6, all 6 were once again a no go, I brought them to the lady to exchange them for my next 6 and she said, and I quote..........."you are not wearing any pants."


I will give you a minute for that to sink in.



Not wearing any pants? What is this bitch talking about..............................holy fuck, I drop the jeans and run/waddle back to the dressing room. I just walked up to the Target lady not wearing any fucking pants, how do you recover from that? What would you do? I was leaning towards crying (but I was worried that I would be arrested because I walked around in my underroos for no reason). I mean who does that? This girl. It was a complete and horrific accident. I was just so focused on trying to find jeans, off/on, off/on, off/on, exchange............. I just forgot the "change" into your own jeans part before walking out.  So I put on my jeans, went to get my next 6 and mumbled something at the lady about cancer, chemo brain,crazy day, while not making any direct eye contact. And the thing of it is, I didn't find one damn pair of jeans. 

I will blame it on a few things: 
1. clean up the dressing rooms, and people bring the clothes out (preferably wearing clothes) when you are done, my jeans must have got lost in the crowd of unwanted clothes on the floor
2. chemo brain--which I thought was getting better, for as long as I can remember after chemo I have never taken a shower and been 100% sure that I washed the conditioner out of my hair, I literally can't remember doing it. I know.....crazy! But for the past 3 days or so I could, so I thought my chemo brain was fading away................but it's not. Apparently my chemo brain wants me to be some sort of nudist.