Tuesday, August 29, 2017

you might want to sit down for this.

There have been too many times in my short 33 years that I felt my life has been turned upside down. That someone grabbed me by the ankles and threw me over a shoulder, bashed me against a tree, threw me like a stone, kicked and stomped and beat me black and blue. I have gone blow for blow, I've cowered, I've sulked, I've stalked, I've turned the tables. I am relentless. I am trying to get my head around this. The amount of joy and fight I have inside this body of mine is astounding. I am broken, I am blue and I am wrecked from past treatments and side effects. What I've come to learn is that radiation necrosis of the brain isn't something that will go away. In fact, even when drugs (like Avastin) are introduced, they may gradually reduce some of the symptoms (edema, brain death, speech problems, mobility problems, etc). They are likely to come back, many times with a vengeance.  When all of this began six months ago I figured it was another ride on the gamma-knife hell highway and then I would slowly coast back to a life that I had dug my heels into beginning.

Since having my off-lable (read: insurance won't pay for ANYTHING) infusions of Avastin (a drug that is usually paired with a chemo drug) I have regained what I would call "light feeling" in my right leg below my knee. I am still only able to walk by lifting my leg at my knee, but prior to my Avastin treatments I was unable to feel anything at all in my right leg below my knee. I still have a low pulse in my right foot and it hangs tilted in. I have an AFO brace that helps me walk straight and I have to use a walker (she is named Betty) because there are times I am completely unstable. I have osteoporosis and it is incredibly dangerous for me to take a header onto the floor. Prior to realizing what was causing the weakness in my right leg (read: brain tumor) it was thought that I had sprained it and when I continued to fall it was chalked up to the sprain and my general level of uncoordination.  It was only after imaging of my brain that the pieces were put together.   

Reluctantly I am tapping the breaks a bit. There is no way to know for sure how things will go moving forward. I do know this, I will be me for as long as I possibly can. I've spent a fuck ton of time honing in on who I am and who I'd like to be. I'm starting to like her a lot. I think it is important to calm overzealous expectations of recovery for me at this point. Do not take that as I am going to take this without a fight, for fucks sake, you should know better than that at this point. I am going to live every second of every fucking day with the best possible outlook, surrounded by incredible sights, sounds, friends and family. I am going to create and connect and enjoy living. I am going to laugh as loud and as often as I can. I am going to ugly cry wherever the hell I feel like it and push my walker with the best of them! I am 33 going on 99 and I am planning to use that spread to my advantage.

when one leg doesn't work and you fall, hard
I am fully aware that most people don't have the luxury that I am planning to relish in. That's right. I'm going to relish. in. this. fucking. blissful. luxury. of. circumstance. I don't need a five year plan here people, I don't even know if I will be around in 5 years. I don't know if I will have the ability to walk again, ever. I may never drive a car again. It may never be safe for me to live alone. I have lost almost complete independence. If I focus on the insurmountable list of things I can't do, probably won't "have" or "get to be" I would never get out of bed. I am doing my best to turn my thoughts into relishing in the unknown (I'm still working on it but it is a far cry from where I was). There aren't many people who are given a somewhat blank slate of what their life was just months ago....months ago I thought I was cancer free, I was on my way to "becoming something" or someone, or whatever type of undue pressure and guidelines I was placing around myself. I was comparing myself to my peers: many married with children, careers, mortgages, debts, their version of the American Dream. My dream had a 7 year pause placed....everyone's life kept going....mine was stuck in orbit around cancer and everything that cancer sucks into its universe. It is a black hole so deep and dark I psychically cringe and squint when I think of having to peer out of that hole into the real world. My perception was warped, I was wounded, I was weak and I was reckless with myself. I was throwing things together haphazardly with reckless abandon (not the good kind that makes you smile so much your face hurts for days). I was trying to patch gaping holes in all aspects of my life, failing miserably. I was running on empty, for years.

Luckily over the past year I had begun to gather up my tattered edges and weave a pattern of strength. I created patches where there were holes and those patches held up. With each accomplishment I gained a little swagger back, I could feel my feet holding me up, shaking my booty with each step. Dori was getting her groove back...and I was fucking loving it. Things were swinging the right way; stars were aligning, all the good bullshit. It was a lot of fucking work. It remains a lot of fucking work. Self-care was not something I understood during the majority of my battle with breast cancer. I thought if I put my head down and just bashed through shit I would eventually end up on the other side. This is true, I did end up on the other side...but I arrived so badly beaten I didn't stand a chance. Now, today, everyday, I spend more time care-taking of myself than I ever have. I wish I could shake the "me" from the beginning of this battle. I added a war within myself, I thought I was protecting myself, protecting others by being something I wasn't. Bravado is overrated when it isn't supported in strength. Treating the whole person should be the motto for all medicine. It should absolutely be mandatory for all patients.

hospitalization with a left lung full of fluid
I have had to let go of control (therapy twice a week definitely helps). Because I am someone who needs to control everything. I feel lost without it, I am at the mercy of others. The irony here is I have been at the mercy of cancer since the beginning. I just forgot to remind myself of that. Or I just kept getting bigger and bigger blinders on. It didn't matter what the blinder was: as long as I didn't see a straight line I could somehow convince myself that I was still steering the ship. I should have just walked the fucking plank.

I have decided to become a creative being. I am no longer going to worry about crossing my "t's" or dotting my "I's". I am going to color outside the lines. I am going to roll with the punches (and throw a few back). I am going to do the best with what I've got. I am going to power forward in a way that feels good in my skin. I am getting comfortable in chaos. This luxury of the unknown is an unexpected gift I got smacked in the face with. It left a mark, but I wouldn't have it any other way.  I am going to need help, lots of it. The scary part of the unknown, is...well, the unknown. I didn't have a lobotomy; I've chosen to re-frame my life circumstances. I vow to remain fluid and relentless in the pursuit of what makes me happy.

The eeriness of the calm that encompasses my body is foreign to me. I recognize this shift is going to take care-taking, encouragement, endurance and (staying true to myself, a shit-pot of four letter words). I am going to be angry, scared, tired, spent, exhausted, annoyed, you name it, I'm sure it will spiral through. The difference this time? I am going to listen to the feelings, share those feelings and push through them. I'm holding myself accountable to you. I need partners here and I hope that I have found my tribe (once again).

It takes a village to do just about anything. This, my story, our story, is no different.

Tuesday, April 18, 2017

#Lollibback #vengeance

As I sit down in bed to type this tears, start rolling off my cheeks before I can even get my laptop open. I want grace and calm in the face of the storm, I'm a melting pot of oreos and mouth sores. I have reached the limit of feeling comfortable asking for help. I mean how many times can someone get sick before it is the "here she goes again" eye roll and the "woe is me".

I spent a good chunk of the last few years isolating myself from most anybody and anything. When Scott left I was not in a good place and I had been put on so many benzos I was a walking zombie. I was also taking Keppra (a seizure medication) that gave me Keppra Rage (read: steroid rage). I had the hardest year of my life, I worked diligently with a professional and got off all the tens of meds that were doing so much more harm than any amount of good at the time. It was a fresh start. I was finally able to be in my head, it was a glorious place I had missed for so many years. I started to find joy in small things, basic things, daily things, fuck, just JOY! I would go to sleep with a smile on my face and all be damned if it was there in the morning. For the first time in 6+ years I was sleeping through the night, working out and getting things going.

My appreciation for the love and support of others left me at a loss of words. They were doing their best but were caught up in the roller coaster of medications that weren't working the way they should. I was given a cancer-free diagnosis and finally was able to get in off the extremely long wait list of an anxiety-based PHd Therapist! It was looking like physically my body was going to cooperate enough to get some stuff done "upstairs".  Things were going great.

...they were going...

Then one flippant comment got stuck in my throat like coarse stones. I couldn't shake it. I was on my way to a "routine" MRI (under GA to check on Lolli) with my sister Kerri. They were going to take out my port Mavis at the same time...because Lolli had been dormant and about the size of a pencil eraser for long enough all members of my team agreed. That flippant comment? "Well if Lolli's back I'll just be gamma-knifed again, no biggie" (it may have involved shooting lasers with the tips of my fingers like some crazy childs gamma-knife gun).  After Mavis was removed and Kerri and I were on our way back from Seattle I received a voicemail from the brain tumor center where I normally would go for a "routine" follow-up. They were wanting me to go to see my neuro doc at Gamma-Knife, the next week. Those coarse stones where held in only by huge gasps of air that were not sounding remotely human. So I started returning phone calls until I would find someone who would tell me what the fuck was happening....apparently they thought a weekend of "not knowing" would be okay.

 I. Disagreed. wholeheartedly.

I finally spoke with a nurse who told me that in fact Lolli had grown to the size of a jelly bean in a little over a month, which is a big change considering it hadn't been active. In the matter of a week I sold my house, signed a lease, had my second round of gamma-knife and moved.

I truly wish this is where this story took a bow and got the fuck out of my way, but no short and sweet here. I have lived in my new place for almost two months now, since I've lived here Ive had to call 911 twice: once was for headache/brain swelling/etc post gamma-knife and the other was because I took a hard fall and couldn't get up. Knowing what we know all the things that have happened were interconnected, it is just harder to piece them out piece by piece. In the span of a month Lolli has gotten 4 times bigger than at the time she was treated with gamma-knife. We were able to tell that from a CT done at my most recent trip to the ER. Last Friday I underwent general anesthesia and had some more brain MRI imaging done. Yesterday I was able to meet with my neuro doc, things could be much better. Since the fall a few weeks ago I haven't been able to move my right foot at all, it hangs limp. The amount of swelling and Radiation Treatment Effect in my brain are causing neurological deficits; they don't know if or when or at was cost I get them back. I have radiation necrosis, which increases each time you have gamma-knife; it is in essence more scar tissue that can act up and fuck up my shit. Consider my shit fucked up.

I have to use a walker or a wheel chair. I can't drive a car and the damage could very well be permanent. Not to mention if we can't get the symptoms under control, it could get worse. Lolli wasn't a good surgical candidate because of where is is located in the left side of my brain, right smack in the middle where the use of motor function on my right side could be effected.

They upped my steroid dosage again yesterday, hoping it will help with some of the swelling in my brain. I am going to be doing a chemo-like infusion of Avastin that has shown to have some off-market ability into breaking up the brain necrosis. The other option is a small size hole drilled into my scalp with a laser where they target just the necrosis and that has been shown (especially in children) to have helped elevate the tight quarters.

My face has started to morph into the large, features of steroids, where I am uncomfortable and irritable all the time. I can't move or do many things on my own, which adds to layers of frustrations I didn't even know where there.  My mouth is already covered in sores and it just seems like I keep getting slapped in the face. I try another avenue and BAM right to the face.

I'm calling on my tribe. This time I'm not zoned out into a world of pills, I have to absorb every ounce of this hellish shit that floats in and out of this head of mine. And i'm fucking terrified. I'm not even sure why I expected things to go differently, but I did. I made it out of the hellish marriage, out of the damn house, fuck even into a new house, even with gamma-knife round 2 to boot. I thought "I did my part here, time for some shit to work its way in my favor..."

I am going to update as much as I can on social media and my blog. I am feeling pretty disconnected and would like to close that gap. The past few months have just been a lot to take in and now it is time for some trial by fire.

Tuesday, November 1, 2016

burn the white flag.

I have written this blog too many times to count... I think they are for another place and another time. I don't know how the puzzle fits together and the entries are full of raw emotion and a bit of unhinged-thinking. I've decided to keep it simple there are too many moving parts to go off on a rant.

Yes, I know it has been too long. Yes, I realize this needs to be done. No, I don't want to. Yes, I know I need to.

The last time I wrote I was on my way to get gamma-knifed. Post gamma-knife went better than I would have guessed. Other than making my family pose for pictures with me while I was under general sedation and had a medieval looking brace screwed into my head.  Lolli got a bit bigger, then she was on her way out. I have had brain MRIs every 6 months since I was knifed: Lolli began shrinking, turning from a golf-ball to a shrimp, to a pencil eraser size piece of inactive scar tissue. So to sum it up, #lollibdead

I have had multiple PET scans (each separated 6 months apart). The scans are keeping an eye on any changes in my body... cancer trying to show up. There have been no active signs of cancer. Let me repeat: #lollibdead, #endstagecancerfree.

I don't have cancer.

I don't have another PET in 6 months.....I have one in 1 year! My oncologist still feels strongly that Lolli was a result of a few cells breaking off and making their way to my brain. The treatments in the past never breached the blood/brain barrier. In essence allowing those cells to grow for 5 years unchecked, until I had the seizure..... then I gamma-knifed, chemo pills that did breach the barrier (I was only able to do them for a few months, my body couldn't keep it together).

Yesterday, I received the latest PET scan results. Clear.

For now, I feel like you can put a bow on the cancer package.

So... I've lost two tumors, one named Lolli, the other named Scott.

I'm a fucking champ.

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.

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.

swollen legs.
lack of boobs.
open sores on arms.
open sores on legs.
chub rub.
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.