Lumps and Lipstick.

We all knew my boobs were trouble.

2023-07-17T21:09:00.003-07:00

X marks the spot

I recently had my 13 year mastectomy anniversary. 13 years ago my boobs tried to kill me, so I got them cut off! It was the first "choice" I was able to make. It was recommended that I just get my right boob removed but that seemed nonsensical to me--so I said "take 'em both." My first choice...everything swirls around you, like a tornado of information and opinions when you're diagnosed. The first thing I was able to get my hands on was making the surgical decision.

MRI of right breast...full of tumors

I had a pump-up party pre-surgery! I had friends rotating in. My dear friend Patti taking photos and I even ended up standing on my hospital bed wearing pink boxing gloves. I didn't go off the rails...those rails on a hospital bed are just too hard to get down.

party over.

The nurse came in and started my IV, the parade of visitors was called off and I took out my contacts and put on my glasses. They put medical tape over my nose piercing and a very sexy hair net on. I was riding pretty high after seeing everyone, until I heard the click the brakes on the bed make when they are taken off. My stomach dropped and caused water to well up in my eyes. I was all alone. There was a fear I've never felt before circulating throughout my body, causing my hands to clench.

post-op

Then I woke up, alone. Far from the fanfare I had pre-op. I was wheeled into a room, but no one told the nurse or my family. They hadn't put my glasses on me so I was blind and in a lot of pain, as no meds had been administered, because I didn't have a fucking nurse! Slowly I was discovered and my pain evened out. My family was found and brought into my room. Things became as normal as they were going to be via this particular hospital stay.

I am now a surgery pro. I have had countless types of breasts, infections and surgeries. I have been left with a right breast that has been seared and contains a portion of my lat muscle that once carried an infection that put me too close to death. My left breast has character. It looks like someone ran over a pancake, then reversed back over it. It doesn't resemble a breast at all. These pair of knockers are ornamental but the combo hasn't tried to kill me so I'll keep them around.

My 4 Legged Therapist

2023-02-17T10:16:00.001-08:00

I am volunteering at a breast cancer resource organization, Living Beyond Breast Cancer, and wrote a blog about my experience with equine therapy. The blog and a link to LBBC is below. Here are a few thoughts that I didn’t turn in for the LBBC blog. During my sessions I was wearing neon pink and with neon green accents, to be precise, shoe coverings. Imagine a snow boot made out of rain jacket material with a zipper all the was up in the back with boot tread on the bottom and even a tiny little pocket. It was reasonable to wear them, as the corral had mud and a bit of poop. I didn’t want my shoes to end up the same, so I figured it was a perfect time to break out the “boots” that are so neon you must squint a little when you look directly at them. I am almost positive the horses were either blinded by them, or were extremely disappointed in my fashion sense.

The horses offered me little morsels of love, a side-eye here, a mane shake there—all giving me fluttery jitters. I decided not to give the horses food—that is pure bribery, and I wasn’t going to give myself that false sense of flattery. I want them to like me, for me… At my third visit some of the horses met me at the gate. Either they remembered me and were excited or they were like “I really don’t want to stand in the same spot for an hour just to put this bitch in her place” and they were choosing me over mind-numbing boredom. In all seriousness, the experience was a part of a tremendous turning point for me. I loved getting uncomfortable—in all senses, it was fucking freezing! But I loved the little attention, to the full attention I was getting. I had to stop because the weather got too cold and my bad leg, with limited circulation, was getting too cold. I get to start back up in the Spring, this time I may have to bribe the troop to get them to love me and my neon pink shoes. I could figure out how to make the link connect so you will have to use a few key strokes and copy/paste the link... You can find my full blog post at: https://www.lbbc.org/blog/healing-with-horses

free & clear

2020-10-06T18:50:00.001-07:00

My test and scan results are in...

Bone scan is clear.

Chest CT is clear.

Lab work(s); including tumor markers are all normal.

Brain MRI shows NO GROWTH since August 2019!! My radiation neurologist said "if anything it looks a bit smaller".

August 2019 on the left & September 2020 on the right

All of this is tremendously soothing to my worrying mind. When it comes to tumors I can breathe easy for awhile. Receiving this news cuts two ways. I am thrilled that I don't have to add something more for me to battle with. For that I am truly grateful. The other hand will be harder for you to understand. The other hand holds pressure to be "ok" and the weight of it suffocates me. It sits and emits a low vibration right through sternum. A mix of pressure and panic that just sits there, when it is quiet, it pushes down

and it can become hard to breathe.

I feel pressure to be normal; what normal means for me I don't know. I set an expectation for myself that I can't even define. That's how fucked up this whole 10 year fight has left me. I stick my own foot out for me to trip over. It just seems like if my cancer is "under control" the rest of my life should line up accordingly, but the crux of it is my health problems expand so much farther than cancer. Even more than that, as terrifying as I find the day and night before and the day of scans, they act as mini mind-vacations. My thoughts are focused on one thing and I don't have space for any other health problem in my head. I don't think about my right ball (ha) in my shoulder "ball and socket" joint and how it is collapsing in on itself because the bone is literally dying. I forget that my adrenals no longer work and I will have to take steroids every day for the rest of my life--steroids that add to the death of my bone. I don't think about...you get the idea.

So here I am. Newly scanned and ready to take on the world. Or at least finish a blog. I think that is a good place to start. Thank you for being a part of #TeamDori and riding this crazy train with me.

I want to express my deepest thanks to those who've participated in the Go Fund Me campaign, whether you shared the page or donated. And a HUGE thank you to my amazing sisters for their hard work, dedication and love. I'd be lost without my family and I am incredibly thankful to have such tremendous support in my life.

#TeamDori #dielollidie

3650 Days

2020-06-24T00:24:00.001-07:00

what doesn't kill you makes you stronger.

Today was my 10th cancer-versary. It has been 10 years since my phone rang and the voice on the other end confirmed what I had already known in my bones. I am not sure how I feel about the past ten years. I didn't know it was my cancer-versary until my mom mentioned it, it would have just been another day...I also don't know how I feel about that. For this, my 10th cancer-versary, I thought it appropriate to share my first blog post, a post I wrote ten years ago to the day. Before I copy and paste that I want to thank you all for the many forms of support I have received over the past ten years. I am absolutely certain I would not be celebrating a ten year cancer-versary if it wasn't for all that I have been given in terms of support, love, prayer, positive juju, time, generosity, you-name-it. It takes a village to do many things in this world and surviving is one of them. Thank you.

"Today is the day.
Today is the day I was diagnosed with invasive ductal carcinoma. I found a lump in my right breast about a week ago. Prior to finding the lump I had some nipple changes, it was flaky and red for a few months. I thought maybe it was a change in laundry detergent, or because I stopped birth control pills, I never thought that those type of breast changes meant anything......boy was I wrong. I went to my primary doc and she agreed that there was a lump and referred me to ultrasound. On Monday I had three ultrasounds, two mammograms and a double biopsy. Women, who were around my mothers age, kept commenting on how young I was, and that it was good I didn't have children.......

So today I get the first round of results. What it means is that I have breast cancer in my right breast, that has spread to my lymph nodes. They are doing more tests to determine the stage, etc... I have a consult with a surgeon on Monday, until then I wait. I am a planner and like to know what can/will/should happen--so I stopped by Borders on my way home today and bought books for myself and one for my unbelievably supportive, caring and absolutely perfect husband*--without him I don't know if I would be sitting here typing on the day I find out I have breast cancer. He is my rock, and as strong and loud that I am, he keeps me steady and in control--he encourages me and knows I like to talk and tell people what is going on--so here is my blog...

Welcome to my journey."

*At the time I did have a supportive husband, but we all know how that turned out

a Dori story

2019-08-12T12:06:00.004-07:00

It is the time for a "if it was going to happen, it would happen to Dori" story. For the past 5 weeks I have had a fever more days than not. I am a 96.7 degree type of gal and I've been living at 100 or 101. Luckily staying a cool 99.9 degrees with a rotation of Tylenol and Advil every 2 hours (sorry to my liver). I also have had intense pain in the left side of my face, sometimes accompanied by cheek redness and it being hot to the touch. I doubled my steroids (which I take as a substitute for my adrenals; a diagnosis for another blog) I received some benefit, but it didn't get better.

Penny, Parker and Winni

It was brought to my attention it may be something to do with my teeth on that side, but I had no pain anywhere in my mouth. I called Urgent Care and they said they could do an x-ray that would take a look (I called my dentist first, but as I no longer have dental insurance we were hoping to bypass the expensive x-ray portion at the dentist) so off to Urgent Care I went. When the doctor came in I was told, they could not do the x-ray. But the doctor did look in my nose and ears and confirmed that I didn't have an ear or sinus infection. "Clean as a whistle" was the diagnosis handed over by the doctor who obviously liked cats more than what is acceptable in the realm of being a normal adult. She had a cat stethoscope, the front half of a cat on one shoe and the back half of a cat on the other, her scrubs had cats, it looked like a cat had braided her hair and of course tied it off with a 80s cat scrunchy. She said she would run STAT labs (which would take hours) and call me. I had an elevated white count, but because they weren't able to draw blood properly (I was a hard stick and the blood was coming out slow and ended up clotting) they couldn't tell me how high, they just used the max number and wrote a note below and the results also showed inflammation. The only thing I got from Urgent Care were adorable child-sized "doctors" masks" that my nieces can use to play doctor--a win for Aunt Dodo. (I ended up seeing my dentist, everything was clear, no sign of infection, my x-rays looked good, one more thing checked off my list of "possibles"). But thanks to cat woman, I will have bills to pay from both Urgent Care and my dentist....

My next step was my primary care provider (PCP). They too told me I didn't have a sinus or ear infection, sent me for some more labs (the results were the same as at Urgent Care) and they were done with me. Because I take steroids to mimic what my adrenals should do, I spoke with endocrinology about having to keep my steroids doubled (to mimic a normal immune response to being ill; another diagnosis for another blog) and they told me to keep my steroids doubled until the reason for the fever was discovered. Having a fever for such a long period of time, with pain on top of it, has completely wiped me out. I have had a few good days, my fever seems to only be visiting me at nights for the last handful of days so I am doing better in that respect. But my body fighting for so long, running on overdrive, has totally worn me down. I am exhausted and yet have trouble sleeping. I have more body and muscle aches than from recent memory and am constantly battling the left face pain which seems to have a mind of its own.

My endocrinologist was going to speak to my oncologist as I had an appointment with my oncologist already scheduled to go over the results of my bone and CT (Computerized Tomography) scans, so she was the next doctor in the batting order. I spoke with the nurse on my oncologists' team twice and was assured that the two offices would talk. I was sure to express my concerns and wanted to double check the teams will have talked by the time I came to SCCA (Seattle Cancer Care Alliance). The oncology nurse even called me prior to going into a team meeting checking in with me, seeing if my symptoms had changed, before she went into the meeting. A meeting where one of the patients they were going to discuss WAS ME! So while dragging myself to the appointment I was grasping at the idea that we would at least leave the appointment with a plan. I'll give you one guess on how that went...

The teams hadn't talked.

Some good news, my CT scan didn't show any new signs of cancer. My bone scan was clear of any signs of cancer but unfortunately it showed that my humerus (the "ball" in the ball and socket joint of the upper arm) on my right side is no longer round, it has caved in (again, another diagnosis for another blog). So cancer free on the scans! But my oncologist offered little help. I had my regular 6 month brain MRI (magnetic resonance imaging) scheduled for the next week, she said she would add onto that scan some imaging of my face to see if we could spot anything that way. She told me that the scan would have to be done at UW, as would follow up. She was obviously flustered and as a result preformed none of what would be considered her "duties" during an appointment with my breast cancer oncologist, like touching my breasts or feeling my lymph nodes (which would have been helpful in multiple ways). She spoke to me with thinly veiled contempt for asking her to help me with "non-breast cancer related issues"--well at least do the fucking breast cancer related ones. I didn't put the gown on for fun. I was so stunned that the teams hadn't talked and that I was leaving there with no plan I didn't even bring it up, it wasn't on my radar. I just wanted to get her out of the room so I could cry and cry I did. I went to the bathroom and silent cried, not because I felt like I had to be silent, it was just mouth agape sobs that are so loud you can't hear them, while tears streamed down my un-made up face. Not only did it crush my fever filled spirit, the crying seared the left side of my face with a pain I had yet to experience, with no ice pack for mild relief, for the next hour and a half on the car ride home. Thanks doc.

The next step in getting these uncoordinated symptoms checked out was my MRI. The day before my scan I get a call from the radiology nurse at UW to go over standard instructions for my brain MRI under general anesthesia. I wanted to double-check with her that my oncologist had actually added in the request for the facial "slicing" images. She had not! She had over a week to have done it but not only did she fail at being a breast oncologist, she failed at the limited follow through she had to do. It was the end of the work day so I asked the woman from radiology if I could call her back and I made some frantic calls. I called SCCA where her office was and they were closed for the day. I called the Alvord Brain Tumor Center where my neurologist is and couldn't reach them. Someone sent me to the on-call neurologist for UW (this is not the person you call with a question regarding a scan, this is who I would call if I thought I was having a seizure). I explained what was happening and that my scan was the next day and I needed the facial imaging. She called and spoke to my neurologist who orders my brain MRIs and she thought the imaging would be sufficient but it was lost in translation what exactly my needs were.

The next day we arrived at UW for my brain MRI. While waiting for anesthesia to get their things together a nurse comes and says they just had received orders from my oncologist to add facial imaging to my scans. This puts them behind schedule and they didn't even know if they could do it because of how tightly scheduled MRIs and the anesthesia teams are. The GA team was on edge and finally said that if it wasn't sorted in 10 minutes we were going ahead with the scan, without the facial imaging. They couldn't start to administer GA before I signed a release for the second scan...meaning the anti-anxiety stuff I am given just to get me to the gurney couldn't be administered, I wasn't holding up well. It did end up getting sorted and I got the images. I usually wake up from GA pretty well and very quickly. This time it was too quickly, I still had the breathing tube in and I was trying to pull it out, they were yelling telling me to keep my hands down, they would hold them down and soon as they let up I was trying to get it out. Finally after a few good coughs and a pull it was out and I was spent.

My brain MRI results look good. Lolli has changed shape a bit, she looks like a tadpole, she has grown a tail, but is roughly the same size--all good news!! The facial imaging that I was more than likely not to have received if the on-call neuro doc from UW hadn't called SCCA and who knows who else, to put it on the radar for the team at SCCA. It obviously got to someone's voicemail or desk bright and early in the morning, a message from an on-call doc at UW lit a fire under someone's ass to put the order through. They found "a tiny focal medial bulge of the cavernous portion of the left internal carotid artery; a 1mm to 2mm medially orientated aneurysm." This was not on anyone's radar and it wouldn't have been if I didn't have the facial slicing scans that were literally added last minute to my MRI. I went ice cold, what fever?

The next step is a CT Angiography (a specific kind of CT exam that focuses particularly on the blood vessels, for me it will be a CT of my head) to confirm the MRI results. My oncologist told me that when we get the results from the CTA back I will be referred to a neurosurgeon. They would then set up the game plan; anywhere from following it very closely to surgery depending on what it looks like and if it "looks like a bleeder" (not sure how I feel about her terminology, but I will give her that one, this is definitely out of oncology territory). My oncologist told me the scan would have to be done at UW because SCCA doesn't have the ability to do CTAs, I assume because it isn't cancer related. She said she'd put in a referral and to plan for a scan the following week.

I received a voicemail from SCCA to schedule the CTA and I didn't understand because my oncologist told me it was to be done at UW. When I returned the message and left a voicemail I told her I was confused because I was told it couldn't be done at SCCA, that I was outright told it had to be done at UW; could she please double-check with the team before scheduling. I figured either my oncologist was wrong or she put the referral into the wrong place. When our game of phone tag stopped I expressed my confusion again and the team scheduler put me on hold to call imaging and she told me "they asked a few people" and was "sure the scan could be done here." So I scheduled the scan for Monday, the 12th.

This isn't cancer related. It is a "if it is going to happen to someone, it is going to be Dori" thing. I think I need to change my name, maybe these things will stop happening to me.

I have a CT Angiography (a specific kind of CT exam that focuses particularly on the blood vessels) today, Monday the 12th. I am particularly nervous because the step after this scan is to meet with a neurosurgeon to discuss next steps, from closely monitoring it to neuro-surgery. I have a knot in my stomach that may be giving the knot in my left internal carotid artery a run for its money. I could use some good juju and whatever else you'd like to send my way today. I won't find out results for, what I assume, are a few days and will update soon.

until next time.

Next time came real quick, before being able to hit "publish" on this post I received a call. My phone was on silent but luckily I was blasting music (helps override my nerves a bit) using my Bluetooth speaker and it suddenly went silent; I realized I was getting a phone call. It was SCCA telling me that they actually can not do the CTA at SCCA, it has to be done at UW. Are you fucking kidding me?! I was within 10 minutes of getting in the car to go to Seattle and she sounded like this wasn't a big deal. In the scheme of things it isn't that big of deal because they can fit me in at UW today, just at a time slot where we will be stuck in rush hour traffic on our way home. So I am having my CTA today, Monday August 12 at UW, the home sweet home I should have had from the beginning.

let's try this again.

until next time.

I scream, you scream....we all scream for blue internal stitching?

2019-06-28T00:20:00.003-07:00

fuck yeah it is.

wait, this girl?!

On June 23^rd I celebrated my 9^th Cancerversary. A week or so before the 23^rd of June, nine years ago this week, a pea showed up on my radar, well, a frozen pea in my right breast. It didn’t matter where I pushed, or rubbed or squeezed it wouldn’t melt. It remained frozen, no movement. It was standing its ground. That frozen pea sent me into shock. When I got the call to confirm what we already knew I was at work. I started to shake and began to cry, a cry that turned into a wave of silent sobs. I was on the floor along with my phone that slipped from my hand when I put my hand over my mouth. I went to my car and sat until I had no more tears, snot snaking its way onto my lips. I drove directly to Barnes and Noble with my puffy face, blood shot eyes and snot that didn’t want to stop streaming out of my nose. I bought every book they had on breast cancer; perfect because I was “celebrating” my 1^st day, of what would be my one-year Canceversary, buying paper. Paper is the traditional gift for a first anniversary.

I am "alive to see 35"

I began to refer to times in my life as “before” or “after” I was diagnosed. I now have a plethora of times to choose from: before or after being diagnosed, chemo, surgeries (pick one), infections (pick one), seizure, Lolli, gamma-knife, second gamma-knife, divorce…I will leave it there, though we know I could go on. I may have a different set of circumstances to describe the last 9 years, but they went by for everybody. I am angry and disappointed with myself that for the last two of those nine years I have ignored my need to write and share my story. Being able to directly and instantly share what is happening unburdened me in a way nothing else has. I was able to let things go—it was out and as a result didn’t need to make a home in my head. It is fair to say that I have two years of thoughts, feelings, happenings, experiences, fears, you fucking name it, that have been steeping in my brain. Get ready, it is on.

my incredible nieces,

Penelope Jo & Winnifred

Greenaway Girls

My last blog post included some feverishly hopeful language, “I am going to relish. in. this. fucking. blissful. luxury. of. circumstance.” I have to admit that probably 75% of that was steroid induced semi-delirium, on the verge of “happiness.” Because “choosing to be a creative being” was definitely not on the table for me at the time. It doesn’t happen when you are in the hospital, restricted from getting off the bed and having to do number 1 and number 2 with an audience. The situation was far from ideal. Not only was I unable to go the bathroom, I was restricted from getting off the bed. If I wanted to get off the bed, to do anything, I had to hit the “call” button and wait for a nurse. They would then have to gown up (I was isolation), come in and turn off the bed alarm so I could then get off the bed. If you try to get off the bed without doing this dance, a deafening alarm goes off that blares into the hallway; as if the hospital was going into lock down because someone stole a fucking baby. Back to the ones and twos. Do you know how hard it is to pee and poop with someone in the room? Let alone with someone within reaching distance of you. Think about it, stretch out your arms, you feel like you could relax enough to do that? Nope, I guarantee your insides, right now, are clenching up so tight you’d need the jaws of life to get things open.

See, I am a nervous pee-er. Anytime I leave the house I pee multiple times. Getting ready for a road trip? I pee as many times as possible, then when feeling ready to get into the car, I head back into the bathroom for one more try. I don’t even know where it comes from. I will watch my fluid intake prior to leaving, but my body is just wringing itself dry to satisfy my neurotic habit. Turns out that a nervous pee-er, can turn into a no pee-er real quick when there is a person next to you. They are lurking, picking their nails, trying to avoid eye contact, even if they are tapping away on their phones (side-eyeing to make sure I haven’t

when your niece has a Halloween

dress-up birthday party and you

wanted to dress as a banana

taken a header onto the floor). So when all the steps have been taken care of, “call” button, bed alarm off, me dragging my right leg along to the toilet, the nurse taking up residence as my Siamese twin I take a seat AND there is nothing to be found, dry. as. a. desert. I can’t think of a good phrase for number two, but if you can’t get number one working you are shit (ha there it is) out of luck for number two. So, I get back into bed. They de-gown and leave. As soon as the door swings closed my body screams “I have to fucking pee!” I fume not knowing if I will be able to pull it together and produce anything if I hit the “call” button and the nurse comes in and we start the dance again. I go back and forth in my head. I finally decide that I could probably get off the bed and pee before they come in and chastise me for setting off the bed alarm…

I. was. very. wrong.

So “I am going to relish. in. this. fucking. blissful. luxury. of. circumstance” must translate from steroid delirium to “I really have to fucking pee, it will be a luxury I can relish in and it will be blissful when my bladder is empty.” Luckily, I have remained out of the hospital for quite some time and have been able to pee and poop whenever the need hits me, and I now know that it is a fucking blissful luxury of fortunate circumstance. Now that my steroid riddled brain is far in my rear view, I do have some heavy hitting blogs to drop. But I thought since it has been almost two years I should share something lighthearted, as an appetizer. A few details may be repetitive from previous blogs, treat them as a reminder due to my absence.

Last summer I was lying in bed waiting for sleep, it sometimes takes ages. I was rubbing my right “boob,” the one that was radiated to the end of its life. The one that has a football shaped piece of skin cut from my back, where my trap muscle was cut, pulled through my arm pit and balled up, the hope that the muscle would overtake the infection that was breaking down the door to take my life. My boob won that one. It left my back with a thick scar that pulls so hard it sometimes hurts up into my neck. It left the valley that lays between my boob and the skin below thin and slick as glass, speckled with spots left from radiation and tearing from what would be stretch marks, but because there wasn’t enough skin to stretch, (when I played the weight rollercoaster throughout treatments), it has slivers of even thinner skin; all of which can be incredibly painful. When I lay down everything is a bit tauter and sometimes the best thing I can do is rub over the pain, try to trick my brain. So…I was busy putting pressure on the pain when I felt something poke my finger. It felt like a reverse sliver, something sticking out of the taut valley under my boob. I ran my finger over and over it, like a child on the corner of their comfort blanket.

I decided further investigation was required. I put my phone on “selfie” mode and turned on my bed lamp. There was a teeny-tiny bit of blue poking out of my skin. It looked, and felt, like fishing line. I was intrigued. As I have been anesthetized to anything that could be going on with my body, I tried to push it back in, with no luck. So, I hit record on my phone and began to pull the string. (Like you thought I would just let that shit stand. My body has created its own language in how fucked up it can be, and it was on a roll). I recorded it because there was no way people were going to believe me. Many of my medical “miracles” that seem like they could “only happen to me,” have been witnessed or diagnosed by my friends, family or doctors. I was in bed, past the bedtime that my mom would still be up, so I needed evidence. I didn’t think anything was going to happen. I figured I would just snip it off in the morning and that would be it. I’d tell my doctor the next time I saw them, probably email them to give them a heads up. So, I pulled……and the string got longer, and a bit longer, and then a bit more…I pulled until it felt like something was pulling back. From my vantage point, looking down towards my belly, the starting point, where I used my fingernails to grab the blue string poking out, was on the left side of the valley. When I felt resistance on the line (insert your own fishing metaphor here) the right side of my skin bunched up…like I was pulling on a loose seam, the fabric beginning to bunch up where the stitching is intact. Stitching was right on the money. I pulled almost 3 inches of blue internal stitching “line” out of my body. I then left the line sticking out from under my boob and called my mom on the phone. She lives with me, but my bedroom is on the main floor and hers is upstairs.

The Greenaway girls: Kristi, JoDe, Kerri and me

She is somewhat use to late night phone calls, as I have called her multiple times to come and squish gigantic spiders on my ceiling (we live in a very old house, with what I can only assume are very old spiders). It is not that I fear killing spiders (I fully admit to not being someone who traps it to put it back outside into its habitat…the fucking spider came into my habitat, uninvited), historically I am a very successful spider-killer. But my physical circumstances have changed; with my right leg no longer in the game; specifically my right foot that can’t reliably lay flat, which makes it a bit precarious for me to try and balance, not only my body weight, but my body weight, with my arms above my head, trying to balance a broom, to kill aforementioned spiders. So, late night phone calls. There was one night that I rang my mom around 1am. She came down and killed, what she will agree, a spider that was prehistorically large. She killed it, we both saw it die, crumpled up (even when it was crumpled up it was a big son of a bitch).

Though my heart was still racing a bit, I felt like I could fall asleep with the knowledge that nothing was going to jump on my face. My mom went back upstairs, to what she assumed would be an uninterrupted sleep. About 20 to 30 minutes go by and ANOTHER FUCKING SPIDER, THAT COULD EASILY HAVE BEEN THE SAME SPIDER IF I HAD NOT SEEN THE FIRST ONE DIE A SQUISHED DEATH was on my ceiling…and moving at a generous clip. I slowly reached for my phone; because rationally, I didn’t want it to see me moving. I kept my eye on the spider and inched my hand onto my nightstand reaching for my phone. I then slid my phone up my torso; because if it was in the air the spider might see it and come charging my way. I brought the phone up to my ear and called my mom, I whispered “come quick there is another spider” I took my eyes of the damn thing for a few seconds, then I raised my voice, not a yell, but pretty close, “HURRY UP, IT’S MOVING TOWARDS ME!” it was coming after me to avenge the death of whatever family member my mom just recently destroyed. I heard my mom come back downstairs, get the broom and then opened my door. The look on her face didn’t say “glad to be back here so soon” but she didn’t say anything. But she couldn’t believe that there was another spider that big in my room. We both agreed that we had in fact seen the first spider die, so this was not the same spider, spitting fucking image though. I thought there was (and when we don’t use an actual pest company to spray outside our house could still be) for sure, a family of gigantic spiders, living somewhere in my room and they were coming at me one at a time. So, balancing the broom once again, my mom killed the second spider, it was dead, very, very dead. Again, we both saw it die, though I wasn’t really taking much stalk in that considering the recent retaliation. We did a “spider check,” finding no more spiders. My mom went to go back upstairs, turned around, put the broom up against my wall and in her normal mom voice told me, “you get the next one.” She shut my door and went back upstairs. Luckily, I was not graced with the presence of another spider that night, because I would have called her, and called her, and called her and called her, until she would have either put her phone on silent leaving me which would have been number three, with revenge on its mind.

Winifred, Parker June, Penelope

So, she is accustomed to late night calls, she probably was thankful this one didn’t involve a broom. I pulled out this string and had my mom on the phone. I led with “I am okay and there isn’t a spider, but you have got to come down and see this.” She came down and after she woke up a bit, she asked me what happened. Um, there was this thing sorta poking out of me so of course I pulled it until I couldn’t pull anymore... Neither of us could believe it. After having an eyewitness, plus video footage, I felt it was safe for me to dispose of it. I took nail clippers and clipped it as close to my skin as possible. I wiped some rubbing alcohol on it and put a bit of bacitracin ointment on and called it a night. I kept the blue stitching in a ziplock sandwich bag so I could show friends and family. I wish I knew where the bag was because I would love to attach a photo to this story. I know I took pictures to go along with the video and have searched “blue” and “string” in my Google photos with no results. You’ll have to just take my very long-winded word for it.

much better than a chicken cutlet!

I got new boobs

The next time I saw my doctor I recounted the bizarre experience I had and nonchalantly they replied, “…those stitches are meant to stay inside your body, and they don’t disintegrate. Sometimes one works its way out and is expelled by the body.” I had so many questions but for one of the first times in my life, I kept my mouth shut. I didn’t want to know more and didn’t want to know why it happened. It seemed like a freak thing and I just let it go. But I know that it was my boob, so angry after everything I had put it through, finally being able to find a way to flip me the bird.

talk soon.

you might want to sit down for this.

2017-08-29T14:32:00.001-07:00

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.

#Lollibback #vengeance

2017-04-18T18:14:00.003-07:00

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.

burn the white flag.

2016-11-01T14:05:00.003-07:00

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.

I'm all in double-down no fear.

2014-08-08T22:59:00.002-07:00

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

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

2014-08-02T00:01:00.002-07:00

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: https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPqVvazoFI5yQuuAM5NGf-q6knsTvzWN5igpFvHOZqntQbB0WG07F2QFljS8nU9qLKfYME8FpUfSpBLYPhglu6GUcxAteSNoiGIxm6Q8hIxrExoXy2JSkiw-qUhHq7TCAX3-mq9SK5CKmP/s1600/IMG_1335.JPG

boob tube

2013-05-29T16:06:00.000-07:00

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.......

ain't that a bitch.

2013-04-10T15:41:00.002-07:00

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.

Celebration of Life

2013-03-21T22:02:00.001-07:00

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.

Bye-Bye Mold!!

2013-02-18T19:16:00.001-08:00

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!!

Well how the hell are ya?

2012-12-06T08:05:00.000-08:00

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.

In the raw

2012-08-24T11:30:00.001-07:00

I figured this was the best way to show everyone how I am doing.... Straight out of the shower with drains around my neck. This is going to be a long, long road. Not to mention the mind-fuck that happens when I look in the mirror and see this. The pain is its own battle.

D is for Dori, not my bra size

2012-08-15T20:25:00.002-07:00

saying goodbye to my second set of boobs, that is two too many.

Well tomorrow is the day folks—I will be checking in at UW hospital at 12:15pm to have these implants removed. I am thrilled with my new plastic surgeon and I know that I am in good hands (literally). I have been miserable since the beginning of June when I had my right implant that migrated up to my collar bone removed, the radiation scar tissue scraped and cut out (cringing while thinking of that malpractice) and a new implant placed there. From there I have been on more antibiotics than most people should be in a lifetime and have open sores on my body, my hair is falling out, I am in constant pain and am achy like I have the flu. Not to mention not being my bubbly sunshine and rainbows self. (HA)

me loving my new boobs!

I had a necklace created for me with tomorrows surgery date and “done and done” (a favorite phrase of mine) stamped into it. The necklace was designed and created in front of my eyes by Bonnie of Birth Designs (http://www.birthdesigns.com). It is amazing and perfect and I can’t wait to see what else she will create.

I am fortunate enough to have extreme love and support from friends and family. I have been held up when I thought I was done and without all of you I wouldn’t be who I am today. One of these people is my wonderful cancer doula Patti Ramos (http://www.pattiramos.com/photoshoots.html), who happens to be also be an amazing photographer. Prior to my bilateral mastectomy we took lots of photos of my old boobs and my dearly missed nipples. I am looking to my surgery tomorrow as a new beginning. I am taking out these infected implants and giving my body a chance to heal. So following tradition we took some photos to say goodbye to these breasts. It was a great experience to take photos and have Scott participate.

Scott and I in our police lineup

yep, I ran around naked in the studio and Patti covered me with lace

proud and infected

Not only did my real boobs try to kill me, my fake ones are too. So let’s start over shall we? Let’s try this again. I will take all the positive vibes and love you can send my way tomorrow. Starting tomorrow I will be boobless, but if I could fill those ‘skin sacks’ with hope after surgery tomorrow I would be a DD.

sour hope

2012-08-08T14:19:00.002-07:00

Well I wish I was greeting you with better news, but you know me, I throw a fit and then apologize later. So here it goes………..my implants have to come out, and by come out I mean removed, stolen, sliced, torn, dissected, leaving me with two (what I have lovingly decided to call) “skin holes” for at least 6 weeks. I have images of being able to “tie them over my shoulder” or the old lady Magda’s boobs on There’s Something About Mary (minus the nipples and tan of course) I have no nipples and I already had cancer once, I will pass on the tan—thank you very much.

So here is the story. I have felt shitty since my surgery on the 1^st of June. You are aware that I had an intense infection, drains, and more antibiotics than I can count. Nothing seemed to make a dramatic difference, and then rashes, sores, more sores and achiness followed (and has yet to leave). Yesterday Scott and I went to my new plastic surgeon at UW and within minutes he said that my implants had to come out—I am a textbook case of an infection and that there is bacteria that is clinging on for dear life to my implant. And to put it gingerly my previous plastic surgeon fucked me big time. After the implant migrated to my collar bone on the radiated side there should have NEVER been a surgery to scrape out the tissue. Standard of care would have been to remove said implant and then being a surgery to create a new breast with my own tissue………that didn’t happen (and was also never mentioned) so here I am. I feel cheated. I feel like I should have been given the opportunity to have a fair shot this time around. I blame myself for not doing as much research as I had previously, but come on, really?! It is your job to be a plastic surgeon in 2012, not 1980 so get your shit together.

I heart my new plastic surgeon and he was very polite about telling me how wrong my previous surgeon was. I now just have to wait for insurance to approve the surgery and I will be in the OR as soon as possible to have the implants removed. I will then continuously be dosed with antibiotics and won’t even discuss another surgery to work with my Magda boobs. That will be an image that will take a bit of time getting used to, but if I can finally not be in as much pain I would let you cut off my foot and I would work with it.

Once my body has settled down and the infection, sores, achiness, fevers/chills, anxiety and pain are at a reasonable level we will shake things up some more by doing a very intense surgery that will use skin and fat from my stomach to create new boobs. And then after that another surgery to adjust the fat to make things more symmetrical. I will go into more details later on, because right now my body is literally too sore to type. My eyes are red and raw from crying and I am so drained I think I could sleep until Monday. But I only have these boobs for a little while longer so I plan to push them together in a bra, throw some glitter on them, and my milkshake WILL bring boys to the yard. But first, a nap.

cry me a river

2012-07-07T12:46:00.001-07:00

I had a great blog that was almost complete about how wonderful and crazy things have been. How I went to my 10 year high school reunion and my sister Kristi got married. That post is going to have to wait..I am in the middle of a cry-fest that is so epic it needs to be documented. I am crying because Scott feels guilty, he can't seem to relax and his mind is always going. I am crying because he has caregiver guilt and I can't give him the support he needs. I am crying because I am mad that he feels guilty, I am mad that I am not healthy enough for him. I am mad that when he looks back on our relationship all he talks about is how I was sick, I am crying because I know he is right. I am crying because I think he should be with someone healthy. I am crying because there isn't enough positive thinking in the world to heal somebody and that just creates open-season for negativity. I am crying because I am sitting in my bathtub in my clothes with the door locked. I am crying because my entire body hurts and no one knows why....I am crying because stress makes the rash worse and I have small lesions in my mouth now and my husband thinks I worry too much.

I am crying because earlier today I was feeling great. I am crying because that feeling has been pulled out from underneath me. I was thinking of ways Scott and I could work together, give him something to do other than work and was thinking of putting a race together to raise money for breast cancer. Now I feel like I am not sure if I will be able to get out of bed tomorrow. I am crying because I feel behind in life. Because I got a fucking infection after surgery and life could use a good slap to the face. I am crying because my fingers hurt from blowing my nose so I have decided to just let the snot run down my face. I am crying because I feel alone, I am crying because I like the solitude. I am crying because I am in the bathtub and my clothes are wet from the bathmat. I am crying because I will now have to change my shirt and I am not sure if I have any more soft ones that are clean that won't hurt my rash. I am crying because it hurts to lift up my arms to change my shirt.

I am crying because Scott can't relax. I am crying because I am not the person he needs to talk to. I am crying because thinking of crying makes me angry, which in turn makes me cry. I am crying because I am sure that our versions of healthy are completely different. That we have expectations that don't have a common ground and I am afraid it will cause a drift we can't breach. I am crying because I need this feeling to go away. I am crying because I don't want to feel this way anymore. I am crying hoping that when I am done I will feel lighter, that something will have come out of it. I am crying because I know that won't happen.

I am crying because I miss my dad. I am crying because I know if he was here there wouldn't be fights about fixing bathrooms or garbage disposals. I am crying because I know my dad would be able to help Scott, that it wouldn't be a chore, they could bond. I am crying because my dad missed out on seeing me be so strong--I am crying because in times like this I feel like I am failing at being a survivor. I am crying because in the medical world after treatment is done they just let you go, but your body is then reeling from all the treatment and you need more support than you did during chemo. I am crying because our bathroom needs to be gutted because the sub-floor is soaked and we don't have the money. I am crying because being an adult is hard. Because being an adult means you probably shouldn't sit in your bathtub and cry hysterically with the door locked--but we do. I am crying because you should be able to, I am crying because it is the only way I know to cleanse myself of some of the weight on my shoulders. I am crying because I feel like I need to fix everything, and I can barely fix myself. I am crying because I am afraid to tell people what is going on because they will think "here she goes again" blah blah blah medical, cancer, blah blah, complaining, blah blah. I am crying because I worry the cancer is back. I worry that the reason I have all these problems now is because my body is busy fighting a cancer and can't focus on healing wounds or fighting off other infections. I cry because I am afraid my oncologist, husband, and others will roll their eyes if I tell them.

I cry because tears are the only outlet at my disposal. I am considering turning on the faucet and taking a shower in my clothes. I am wearing my velour pants (as I call them, my plastic surgery pants) and I am wondering if they will soak up enough water to act as a cold compress for my leg with is unbelievably painful. I am crying because I can't come up with the words to understand where Scott is right now. I am crying because I am frustrated that I can't be his outlet, I am the last person that wants to hear about how me being sick has affected him. I am crying because I know this will make others cry. I am crying because I feel like I lost the momentum I had before I was diagnosed. I am crying because I can't seem to get a foothold on anything in the future. I am crying because I am afraid to make plans, afraid to drive my car, afraid to be around too many people, afraid to be afraid. I am angry I am afraid. I was a ball-to-the-wall type of girl....I wasn't afraid of anything, now all I seem to be is afraid. Maybe afraid isn't the right word, maybe I am crying because my life isn't perfect. That my hard work amounted to something small, and then moved backwards. Maybe the tears are a result of my disorganized brain and piles of laundry. Maybe it is because I feel behind and am overwhelmed.

Maybe it is because it is the one thing I can control when it starts and stops. I am crying because I know Scott is out there crying. I am crying because people may read this and view it as weak. I am crying because they are wrong (but I am not sure how to prove it).

Now if you'll excuse me I am going to move the computer out of the tub and possibly take a clothed, cold shower. Then there is a very good possibility that my illness, rash, swollen face and tears could use a drink.

normal is just a setting on the washing machine.

2012-06-12T15:34:00.001-07:00

Scott and I pre-op

Well it has been just a little under two weeks since I had my right implant removed and my radiation scar tissue cut and scraped and a new implant put in. I was lucky enough to have my family both pre and post-op. Unfortunately many things that could have gone wrong have.... I woke up in recovery in severe pain, I was crying hysterically and found out that they weren't allowed to give the prescribed pain medication that works for me in recovery, it was only allowed in the operating room. Because I have had to take so many IV pain medications through the course of my treatments I have a high tolerance and it can be a big issue when surgery is in play. As a result, I was in recovery for 3 hours, strictly to get my pain under control and for me to stop crying....

my pre-op cheer squad!

my post-op fan club!

Once I was under control I went to my room and had my wonderful family waiting. We were all curious to see if my boob would no longer be on my collarbone--success!! My right boob was pleasantly in the correct position, seeing eye-to-eye with the left. But then, as usual, my body had a mind of its own and my right boob went crazy. I have a severe infection making my boob red hot, rashy, and retaining fluid... I went on antibiotics and upped my pain meds...spending a week literally not able to do anything--stir crazy has nothing on me, I am still house-bound (I think I watched everything on my DVR....and every somewhat interesting looking movie at redbox--I mean I even rented We Bought a Fucking Zoo..........not sure if that is the title?) everything hurt and it wasn't getting better....my boob kept growing, and fluid began to leak out of my incision.

my swollen boob, you can't really see it, but it was about twice the size of my other boob and BRIGHT red hot

So off to my plastic doc I went.......again. Yesterday Scott and I went to see my plastic doc and he agreed that there was way too much fluid for my body to be able to absorb (which is what we were hoping would have happened last week). So he used a scalpel, inserted a 4 inch long needle with catheter and then before he could attach the huge syringe blood and fluid exploded all over the drape (and my pants) because it was SO full. It definitely explained why every time I moved I heard a sloshy sound.... 165 cc's of fluid were removed, and my doctor sewed in a drain which last night leaked all over while I was sleeping. I am also on two new antibiotics--the big guns!

actual syringe used and it is HUGE (like a banana) and it sucked out 165 cc's of fluid

the drain added yesterday, AFTER 165 cc's of fluid was already taken out....lovely

lots of drainage going on here!!! you can see how red by right boob is here, still have the drain in...

So the journey continues....I am still on lots of pain medication and as a result am home bound. I have a drain in and somehow it is poking me from the inside randomly...I think the catheter may be resting near a stitch....it feels like a hot poker so I think it must be pulling on it......not enough pain medication in the world....

I now find myself struggling. The good news is that I made so much progress mentally that this hasn't pushed me over the edge. I have been able to handle the rollercoasters better than I would have a month ago. We always joke that if it could happen, it probably will (at least in terms of my health). My poor body needs a break, it needs time to heal...I think it is angry and fighting me at every corner. Hopefully this will be my last wave and it can become more of a smooth sail from here. I am looking forward to being able to be social, to be able to be reliable, and to have a routine of health and fitness. And I would like to be off antibiotics because I could really use a drink...

move, get out the way!

2012-06-01T12:38:00.001-07:00

Scott and I at the Northwest Hope and Healing Fashion Show

Hi there, nice to see you again....it has been too long! My apologies for the lapse in time, I have been overwhelmed, underwhelmed, sick, tired, angry, frustrated, and too stressed to type. But typing is what I should have been doing all along.... Today I have surgery to remove my right implant, scrape and slit the scar tissue from radiation and have another implant placed--we are hoping that this will allow me to no longer have a boob on my collarbone.

Since my last post things have changed--some things have become clearer, and others seem like a dream that I will not be able to achieve. Since my diagnosis (and during treatment when I was really isolated) I have begun to have anxiety, panic attacks over having to go to the grocery store, social anxiety of big places, anxiety of things that won't even happen, I worry about worrying.... So I decided to take it head on, I walked in a fashion show in front of 400 people with other survivors--if that isn't a bitch-slap to cancer, I don't know what is. And it helped, I was empowered and I had a great time, afterwards I felt like I could do anything...........

That feeling didn't last forever, but it did give me the boost I needed to get out of a rut. I still have some wounds on my legs and arms that aren't healing, my shoulder hurts more than ever, and I have surgery scheduled this coming Friday at 3:30pm to have my right implant removed, more scar tissue scraped out and cut, and a new implant placed. We are hoping that the result will be less pain (having the implant off my lymph nodes and collar bone) and my gals will be more even. Honestly though I could care less about them being even, I just want the pain to go away--and then I will have better result from physical therapy (which I am still going to for the car accident).

Waking up daily and being in pain has become my own "cry me a river" story. I don't mention it much but I am on edge all the time. The pain makes everything else amplified, I get overwhelmed easy, I snap at my family, I have trouble sleeping or focusing on something for a long period of time. Sometimes I have a day where I feel "normal" and I do as much as I can that day, but the next day is like a bad hangover.

I am ready for a new start....I have started to get extremely nervous for my upcoming surgery. I have done it before and I know the routine, I love my surgeon, and I thought I wouldn't be getting the butterflies that are currently making me stay in the bathroom like it is my job. I think it is because this surgery could take away a lot of the pain and give me back the opportunity to heal physically. I have been working really hard on healing mentally (putting things together and making sure I surround myself with supportive people) but not being able to heal physically has made it feel disjointed--they aren't lining up with each other and as a result I feel like I haven't made as much progress as I should be.

I cleared my circle. I spoke with another survivor and she told me how she got rid of things and people that she didn't like after she was diagnosed. I did the same thing! I didn't realize it but I did, even in my chemo and post-chemo haze I was able to weed out people that focused more on themselves than healing and support. What a great coping mechanism that I didn't even realize I had created until I looked at it as a whole picture.

Scott painted the bedroom and we changed everything around (it is no longer my chemo coffin) it is a place where I can relax and sleep. Though my anxiety has limited my social interactions, I still have a circle of amazing support that are unbelievably selfless and loving. I am in a place where I am feeling held.....where if I fall there are many hands to catch me, and if I need a boost they are there. I am hoping that with physical healing my anxiety will lessen...it has been hard to focus on things when the pain is always in the back of my mind, a continuous circle that then causes me to react physically.

We are working on switching up things at the house, finally doing all the things that we talked about doing forever. We are slowly making it our place, our place AFTER cancer, our place for me to survive and where we can thrive together and take on the new hurdles that life will throw at us, but hopefully keeping cancer as something we have went through, rather than something that is on the horizon.

I am not the same person I was three years ago--I look at photos and remember how it felt to not have real things to worry about, to just get to go about life, no lessons learned. There are a few things in my past that have changed how I view the world, losing my father, getting married, having cancer--and the woman I am today is who I was meant to be. I am using the strength that I have gathered to get through all of this, to be able to look someone in the eye and tell them I am a Survivor and mean it with every fiber of my being. I have been through hell and back and there is nothing I can do to change that. I have never been a "glass half-full" type of gal and my cynicism has definitely grown through tragedy...but I am honored to wake up each day and fight.

Today begins another journey, welcome aboard. I am off to check-in at the hospital!!

you don't leave the people you love alone

2012-03-26T15:46:00.000-07:00

It has been awhile, so I put together bits of blogs I wrote but didn't publish to catch you up on what the last month has been like:

rash on legs...........not awesome.

"If it isn't one thing, it is another. Insomnia, shingles, bitchiness, itchy red spots on my legs, intense bruising, a collar high boob, lack of communication, overbearing stress, relationship concerns, tears, booze, migraines, lack of focus, no motivation, feeling overwhelmed, blah, blah, blah.....

I need to get my head straight (and a boob lowered). After a pretty intense breakdown (two days worth of it a few weeks ago) I have decided that I need therapy........though I planted my feet in the sand against it (yes, I know I have a masters in psych and counseling--and yes, I know it is ironic). But here is why I have waited...I wanted to do it myself. I wanted to be able to work through the mush my head has become and come out on the other side, "fuck cancer, I can take care of myself" type of mentality. Not to mention that traditional therapy isn't my favorite, so I am going to search out a therapist that has experience with breast cancer patients (hopefully under the age of 50) and see how things go.

I have gotten progressively more depressed since my car accident. A snowball affect that finally took over. I have been so stressed my body can't fight the slightest irritation. I continue to have shingles on my right breast (I am on my 3rd outbreak) and had a rash on my legs that was so itchy I couldn't walk, I remained in bed trying not to itch. I cut my nails short and wore socks to bed to help prevent me waking up with blood streaming down my legs. I have been on two rounds of antibiotics, one round of steroids and gave up internally. For being a smart lady, and professionally trained to support others, I have found out that I don't know how to support myself.

Maybe "gave up" is too harsh....how about so overwhelmed that it hurts to breathe. How about being blasted with great ideas and not having the energy to do them. How about being in constant pain and having a boob at my collar bone that refuses to play nice? How about being depressed and thinking I could keep it to myself and as a result, it just got worse. So I had a melt down, a BIG one....not a nervous breakdown or anything, but I sobbed uncontrollably for two days and was miserable. I have stopped wanting to go to the grocery store, social functions, or anything really..........the anxiety just builds and I find it easier to stay home. (luckily I love my job and can continue to do that no matter what state I am in, in fact...I find it keeps my mind of a lot of crap)

I have turned inward but with little return........I was thinking that I could just meditate and move past this, quick and easy. Wow, I was wrong. No one warns you what happens when treatment is over, when you don't get lab results weekly assuring you that your counts are good, that you feel crazy because every ache or pain is "cancer". I was so focused on "healing" I forgot to heal. I glazed over the pain and exposure I had and I stuffed it, I stuffed it so deep it made my ass bigger. There was no getting to it, I was going to move on and not look back. HA"

And my current update:
I am now making incredible progress...........I still have a rash on my legs and will probably need another round of something because it has begun to itch again, but I am not letting it put me back where I was. I am lucky enough to be benefiting from wonderful light therapy and a change in perspective. I am honoring myself on the days that are just too hard because of mental or physical pain, I am letting myself have those moments without letting it affect my perspective the following day. I am working on new routines to keep me focused on stuff other than the physical pain, eventually I hope it will include exercise, right now it is more like:

-wake up, try to not hate the fact that pain is already taking over my body
-move from bed to couch, drink diet coke (trying to quit............one thing at a time here people)
-check emails and work whatnots
-go from couch to office chair
-lay in bed for awhile to help avoid taking a pain killer
-smile at Scott so he knows I am trying
-watch some TV, read a book, talk to Lucy
-forget to eat lunch, eat a mid afternoon meal so I can take my supplements
-stomach ache from supplements
-lay in bed until stomach ache goes away
-decide bed feels nice, put Lucy on bed
-Call mom
-see Scott when he comes home from work
-fall asleep
....repeat

Progress, not perfection.

oh balls

2012-02-27T14:06:00.000-08:00

the front of my Valentines Day card from Scott

the inside of my card...he did some editing

I haven't peed on any randomly found pregnancy tests, so I feel like I am making progress.... I did go on a vacation, my first vacation since I was diagnosed, and it was amazing. Me and my collar bone high boob flew to Vegas to stay with one of my best friends Tasia and her kiddos. The last time I flew out to see her was just a few short weeks before I found the lump in my breast. That was the last time I had been on a plane, now here I am 2 years later flying to Vegas to see her again. Our lives have changed so much in the time that stretches between my visits.

I spent a few days at her house and then took my suitcase full of wiener paraphernalia to a suite on the strip to set up for my sister Kristi's bachelorette party. My sisters and accompanying bachelorette party arrived Friday. My body sure isn't what it was, but I surprisingly held my own. I walked more than I have since my car accident and despite having to go to bed before the rest of them I felt great. We then rented a van and drove (for 5 hours) to the Grand Canyon for one night and I was able to see the sunrise the next morning at the Grand Canyon. My sisters and I haven't always seen eye-to-eye (translation: I was a huge bitch and they tried to avoid my crazy wrath) but since we have been adults they are my best friends. The trip was an amazing opportunity to spend time with them. It was good to know that I could survive a trip, even if my feet were swollen and resembled balloons when I got home, I caught a cold, and my shingles are back with a vengeance.

Life doesn't get easier. I have been waiting for things to "get better", to feel better, to get easier........bullshit. I don't feel like that is how things go. Life is one obstacle after another, you are continuously changing and growing and sometimes it slaps you in the face, I have my feet firmly planted in the mindset that you just have to slap back, actually I would go with a swift kick to the balls. Prior to leaving for my trip I found out that a fellow doula and friend had been diagnosed with breast cancer. The "it's a small world" factor really isn't positive in this case. She is a fighter and I know will come out on the other side of the bullshit, but it still reminds me that life changes in a heartbeat.

Good morning at the Grand Canyon

I have gotten complacent. I stopped eating all the fresh veggies (not that my eating habits have gotten that bad) but I am not stuffing my face full of multicolored plates of fresh harvest anymore. I drink more than my fare share of wine, rather than avoiding alcohol as I did before AND I haven't been working out 30 minutes a day since my car accident. I then have nightmares that my cancer comes back. That because I ate chicken nuggets instead of a salad my lymph nodes are being attacked by cancer. That because I had a second, or third glass of wine my insides just give up and cancer takes over. I am rushed awake by these nightmares in a full body sweat and I just lay there looking at the ceiling. It takes me a few minutes to realize that I am okay and not a prisoner of my bed as I was during treatment.

I have done everything in my power to lessen the chance that my cancer will return. But a human being can only do so much, I can't stop my cells from turning on each other, wine or no wine. Life has a mysterious way of pushing you into a reality you weren't expecting, or prepared for....so you adapt. I am aware that my cancer may return, statistically it probably will at some point. But that doesn't stop me from kicking life swiftly in the balls.

A great picture of my VERY high right boob and normal left boob

so I peed on it

2012-02-08T17:59:00.000-08:00

My double mastectomy breast cancer awareness snow boobs!!!

I was looking for something in the bathroom of death (we have discovered that we have black mold, fuzzy mold that looks like it should be growing on fruit, and water damage in our tiny master bath.....which is a whole story in itself because the last thing I need is to be breathing in mold spores) but I ventured in looking for a mirror to pluck the ungodly hairs that Tamoxifen has brought to my face and I found a pregnancy test...........................ouch.

I remember the days when I would pee on them and cross my fingers (and promise everything holy that I would be the best girl in the world or whatever I needed to do) that they would be negative. Oh come on, we have all been there....ladies?

I remember the days when I would pee on them and cross my fingers that it would be positive, we were ready, apparently our world wasn't.

I remember the day I found out why, I had cancer and my estrogen was all over the place, my body is not the best host for a human, not then, not now, not ever.

So I found this pregnancy test, and I peed on it. In case you are curious, it was negative.......considering I am on Tamoxifen and have an IUD I wasn't holding my breath. All the same, I peed on it.

My 2012 hasn't really been all that great. I went into this year with an internal gusto....a "I will kick its ass" attitude (and a bit of a hangover) and found myself somewhat of an emotional puddle of illness and internal frusteration. But I think that I am back on track now, thanks to some wonderful developments....that I will update you all on when I haven't been such a haphazard blogger--you can tell that I am not doing too well when I haven't blogged in over a month. I am working on it............I love doing it, but sometimes I just don't allow myself to do it as a punishment for not "being where I should be" or all I want to do is bitch so I feel like I shouldn't write ANOTHER blog about poor me bitching, but somtimes the bitching is funny, it is cathartic, so I will put it on my to-do list (maybe it will turn a switch on in my brain).

So we had a snow storm and an ice storm. Scott and I made our little snow family, lost some power, and found out that we have a mold problem in our master bathroom (see bathroom of death above).

my snow "Dori"

Our snow family

snow "Lucy"

The melting of the massive amount of snow and ice exaserbated the problem and it is now in quarantene until we are able to afford to fix it, or until I can even wrap my head around all of this. It seems like there is just one thing after another with this house--I loved it when we bought it, it was in a great neighborhood (come to find out we have not the best neighbors) but it isn't just the bedroom that reminds e of being sick, it is the whole house. I have memories that are tied to each piece of furniture, to particular dishes in the kitchen, to our patio (where I shaved my head). I can remember collapsing on the stairs, the numerous nights crying in the bathroom staring at the green walls that I once loved..........emotions are sucked into everything here. Scott and I have saged it, I have meditated about it, but when I am already feeling a bit down, it tends to overpower me.

Oh, and I had shingles on my right boob. This bitch of a boob is really not cooperating. It has actually gotten higher than it was after my surgery, it is now almost touching my collar bone. I saw my primary doc and was given prescription for antibiotics, we weren't sure it was shingles because I don't have feeling everywhere on that breast so I couldn't feel the pain. But then I went to my plastic doc and it was confirmed..........I had shingles like you wouldn't believe. I still have a little bit of the pain under my boob and some dried bumps, but haven't been contagious for some time and hope that it doesn't come back.

Shingles............not awesome.

Alright 2012, let's work together on this. I am open to change....are you?