a Dori story

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?

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.