Since the end of February I have been experiencing a new and unusual symptom. I started randomly smelling smoke every once in awhile, usually at night while watching TV. I would ask my husband repeatedly if he smelled it too, but it was always just me. It never lasted long, but it was odd. I have two teenage stepsons with rooms above our TV room and I even wondered if one of them had started smoking on the sly. But then I started to notice the same smell in my car driving to work, in my office, in meetings. This was not a teenage experiment with cigarettes – this was me.
I reached out to my PCP, Yoda, concerned that maybe I had started to get some sort of sinus infection. My nose was kind of stuffy and I was having trouble breathing out of it, but this had sort of been the case for a few years. I saw an ENT who took a look inside and didn’t see any sign of infection but decided to get a CT scan of my sinuses just in case. My sinuses looked good on the CT scan as well.
What the hell. Smelling smoke, I learned the hard way, is one of those symptoms you don’t want to Google. Nothing good comes up, except sinus infection. And it didn’t look like I had a sinus infection. I got really pissed off about this. I had made a deal with my body: I would keep working hard to fix her outstanding issues as long as there were NO NEW PROBLEMS. I had diligently chased down and dealt with an extremely long list of problems in the last 3+ years. And I was still chasing down a small list of problems. This was manageable – as long as my piece of shit body and I stuck to the agreement. NO. NEW. FUCKING. PROBLEMS. PLEASE. Just for six months. A year. Just let this stop for a little while.
My appointment at the NCI occurred while I was waiting to see the ENT for a follow-up and so after covering the NET related symptoms, they asked me if I had any other symptoms that they should know about. I hesitated for a second – because I don’t even want to acknowledge at this point it could be another problem and I also worry it makes me look insane – I say, “well, I smell smoke sometimes.” And I really feel like that kid in “Sixth Sense” when he says “I see dead people” at this point. It’s a weird symptom! But by the time the NCI appointment rolls around, I have been smelling smoke for 7 weeks and it is getting worse. I decided to keep a “smoke journal” for a few days, just so I could relay accurate information to whatever doctor was going to ultimately sort this out. So, I took note of every time it happened, what I was doing when it happened and how long it lasted. Writing it down made it clear it was happening for 1-2 seconds at a time, about 20 times a day. I did that for two days. It stressed me out and I stopped taking notes.
The oncologists at the NCI tell me I need to go home and get a brain MRI and an EEG and send it back to them. They tell me this two times. As we were leaving the appointment, the oncology fellow grabbed my arm and told me to get the tests done as soon as I got home a third time. I get it, I hear you, I will get the tests done. They speculated that it might be a partial seizure disorder, they have seen this in one of their patients. They did try and reassure me that this could be a result of having had neurosurgery. But please get the tests done as soon as you get home anyway.
It turns out I can’t get the EEG without a neurologist and getting in to see one is going to take time. But I did get the MRI done. The good news? It’s very good news. There is not a big ole brain tumor in the middle of my frontal lobe causing the symptoms. There are a “few nonspecific foci of FLAIR hyperintensity in the subcortical white matter of the frontal lobes” which a little Googling tells me sounds like the kind of thing that can show up on an MRI for patients with seizure disorders. But honestly, I have no clue if that is significant and the radiologist said it could just be a sign of small vessel disease and I have no idea if THAT can cause these symptoms. Hopefully, the neurologist has something to say about this.
Oh yeah, there was one other thing that showed up on the MRI: “Asymmetric soft tissue prominence along the right aspect of the pituitary gland with minimal deviation of the pituitary stalk to the left. This may represent an adenoma.”
There might be another pituitary tumor. I looked at the MRI images, and my right side does look a lot bigger than the left. Is this post-surgical changes? Or another fucking tumor? I immediately get in touch with the Wizard. He doesn’t think it sounds like I have Cushing’s again, but does send me 8 cortisol tests to complete, just to make sure, and tells me to send him the MRI images. And he sends me some reading materials that suggest other patients with pituitary and/or thyroid problems have reported smelling smoke as well. And I have – very recently – started breaking out in acne again and getting very weepy. And I am feeling fatigued. I cut back my hours at work a little to try and get more rest in. All of these symptoms were initial signs of Cushing’s last time. But maybe its a coincidence? Maybe I am in denial? Only time and testing will tell for sure. I know the drill.
Motherfucker. I am so mad at my body. I feel so betrayed by my body. I hate my body for doing this to me, over and over. For a long time now, I have started to see my body as a separate entity from myself. This allows me to get very angry at someone for doing this to me without directly blaming myself. Not saying this is normal or healthy. Only saying it works.
I still need to see the neurologist and hopefully get the EEG – that happens next week. Hopefully between the neurologist and the Wizard we can figure out why I am smelling smoke and if indeed there is another pituitary tumor or something else going on.