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.