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.
a tale of two tumors 
Shannon. I’m so sorry. You have remarkable resilience and strength. I know you can figure this out and find yourself in a healthier place. Don’t lose heart. Love you, Joanne
Sent from my iPhone
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I liked the post even though I don’t like what you’re going through, I sure hope you get some answers. Fingers crossed.
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P.S. I see what you mean about Google, a ton of stuff. Probably worth sticking to top sites but I guess you know that?
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Shannon- I’d like to link to this post in one of my blogs, are you happy with that? It really fits with some of my awareness campaigns about NETs being a pain in the butt to work out etc?
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Absolutely!
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I just came across your site and I have to say, you describe your frustrations with the medical processes so well. I’m enjoying reading through your entries, as I find myself thinking “God I’ve felt that way before.” Especially the anger with your body. Thanks for writing these. Keep up the good work!
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Thank you Emily!
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Dear Shannon.
My name is Angelina. I relate so much to your journey and the intense anger and your feelings of betrayal toward your body. I, myself, have been on a very frustrating journey since I was 44 years old. I am now 64 years old. I was officially diagnosed when I was 61. I had no idea the many odd symptoms and misdiagnoses would lead me down a rabbit hole for almost 20 years. I ACTUALLY DIAGNOSED MYSELF THROUGH MY OWN RESEARCH. And just to make more hell in my life, I had to fight my doctors to give me the test that would definitively tell me what the hell was wrong with me. I was right about what I thought I had and I spent 45 days at the Mayo in Scottsdale Arizona that confirmed what I already knew. GENETICALLY SPEAKING, I AM SCREWED.
I have the rare inherited genetic disorder known as MENS1. I have a pituitary tumor on the stalk of the gland which pushes the gland to the side. It is a non secreting tumor of slow growth and I have had it for at least 20 years. I left it alone after seeing 4 neurologist.
In 2005, I discovered a large mass in my upper leg upper my butt cheek. The MRI showed I had a muscle sarcoma. I was told by 2 doctors I had a muscle sarcoma. I chose NO TREATMENT. The doctors gave me 10 to 12 months to live. The tumor was the size of a navel orange.. I never felt it because it was a slow growing tumor inside my muscle. I had been telling the Drs. For years I felt a swelling and pinching feeling in my lower abdomen. They said it was arthritis. WHAT THE HELL! It became painful after 3 months and I decided just to have the tumor removed with no other treatment ( chemo or radiation). They did a biopsy the week before surgery and found I DID NOT HAVE A MUSCLE SARCOMA AND DID NOT HAVE CANCER. I had a very large MYXOMA. They never considered it could be that because they usually grow in the heart muscles. WHAT, SO I HAVE A TUMOR ALMOST BETWEEN MY LEGS THAT ONLY GROWS IN THE HEART..
IN 2012, I had a parathyroid tumor growing for at least 7 years that wrecked my body. I had all symptoms after 7 years and not one doctor diagnosed it. I got my blood test done and went to the Norman Pitutary Clinic in Tampa Florida and Dr. Norman removed it in Jan. 2012. It looked like a pork chop it was so large. The doctor was furious that it had not been diagnosed sooner. Because of this tumor, I had gastrointestinal problems, racing heart, blood pressure that bounced from extremely high to extremely low, depression, fatigue and general feeling of living outside my body. After removal of the tumor, the Dr. said you will feel much better in a few days.
NOT!!!! I felt worse. More symptoms, more tests, more doctors……..AND UNIMAGINABLE FRUSTRATION. I started researching and reading everything I could get my hands on. I diagnosed myself with MENS1 ( multiple endocrine neoplasia syndrom type 1).. I could get no doctor to even look at this as a possibility. I was told it was a very rare syndrome. So sure I was I had MENS1, I went to the Mayo clinic under the guise of a total physical. Only later when talking with the endocrinologist did I tell him my suspicions. He was very open to my opinion. He did MRIs on almost every gland, organ and abdomen. He found I had an adrenal tumor and a lesion on my kidney.
He diagnosed me as having MENS1….
Usually, three glands are affected by this syndrom.. The pituitary, the parathyroid and the pancreas. The pancreatic tumor is almost always malignant and will result in metastasis to liver! etc. and in death. They can not remove the gastrinomas, I am told, because of where they are located. I already have gastrinomas in my pancreas which is a precursor to tumors . The gastrinomas can tumorize or not. 60% chance they will. My cousin died a year ago of pancreatic cancer that had metastized to her brain. We do not know if she had MENS1. There is MENS2 which affect other glands.
In 2015 I had a pulmonary embolism. Blood clots are also associated with this condition. Now, I live everyday to the fullest, making peace with my body as much as I can. I wait. If it is in God’s Will I get pancreatic cancer, I will gladly take the consequences. It is all out of my control now. I no longer have MRIs or go to Drs. I will know when my last guest arrives.
I am so sorry for your situation and frustration. The only things I can pass on to you that I learned on my journey are to love your body as much as you can, learn the lessons that come with this journey, enjoy everyday, every moment of everyday, tell people around you that you love them and come to the acceptance that really you are not in control of anything in this life. Then you must pass the lessons you learned to others. I pray and will remain hopeful for you remaining journey. Do not let go of your HOPE.
With love and hope Angelina
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Angelina, thank you for sharing your story. What you and I are going through is, unfortunately, all too common. I completely agree, we need to live life to the fullest. I hope you live a long and healthy life, despite the significant challenges life has presented you with.
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