I had my latest brain MRI on Thursday. When I was feeling really ill, I looked forward to these days, really hoping we would find something that would give us a path forward to fixing something. Now? Not so much.  Now I don’t really want to find anything. I am getting more and more symptoms, and they are weird and disturbing.  And now I have a clearly abnormal test indicating there is a problem with my brainstem.  But this knowledge now just makes me scared.  I want to get the test done and over with and just know what’s going on.  But mainly I want someone to tell me nothing is wrong even though I know that isn’t true.  I am living life now, working, feeling free and looking forward to the future. I don’t want to go back to being sick.  I feel like I am living in the stereotypical horror movie, when the clueless girl walks into the deserted farmhouse looking for her boyfriend, the suspenseful music is playing, nothing bad has actually happened yet.  I am stuck in a loop, right there. No monster has devoured my head yet, but I have a sinking feeling something evil is in the house with me.

As soon as the MRI was done, I order a copy of the scan and take it home with me.  I download a 1,000 different images of various slices of my brain and start scrolling through.  I know by now this is a stupid move, but like the girl walking into the deserted farmhouse, even though you tell her she is an idiot for walking in that door, like an idiot I keep looking through the images.  Is this something to be concerned about?  Is that supposed to be there? I see everything and nothing and get really angry with myself for indulging this behavior.

Yesterday, I stare at my phone all day, trying to will my doctor to call me with the results.  But she doesn’t call. I tell myself that must mean its good news – if the MRI was really bad, she would call right away. I tell myself that must mean its bad news – she wants to sit down with the neuroradiologist and go over the images before calling me.  I tell myself to just shut the fuck up and stop thinking about it.  But it is hard, especially as Friday comes and goes with no phone call, which means I will have to wait until at least Monday to get any news.

And this coming week, I am back at the NCI, where I see I am scheduled for labs, 3 CTS scans (chest, abdomen, pelvis) and now a PET scan.  I haven’t even got over the scanxiety from this week and I am already worried about next week. They told me during my last visit I was only going to get CTs scans going forward. So why has the PET scan been ordered?  Are we going to find anything? Is there a chance I have just developed seizures for no reason and can keep going on my happy way with my new medications? Someone please just tell me how this is going to end. After five years of plot twists I am getting really tired of this movie.

Today, I am going to try really hard to rewrite at least the next few days. I am going to go and stock up on fresh fruits and vegetables and get some exercise. Help out this piece of crap body as much as I can.  I am going to an open house with my husband, keep on planning for our future. I will keep Nina Simone’s “Feeling Good” on a continuous loop until it replaces the continuous loop of the horror movie playing in my head. I may not succeed but I am going to try.







I had three nerve biopsies last week on my right leg to assess whether I have any small fiber neuropathy, which seems consistent with the patchy pins and needles feelings I have been having in my hands, feet, legs and face since June.  The biopsies were taken by Neurologist 2.  During this appointment, we had a little more time to discuss the results of the nerve conduction studies (the “blink test” in particular).  The results were quite interesting.  I had six electrodes on my face, three on each side forming half circles around my eyes.  A nerve near the eyebrow was shocked on each side and the path of the electrical response was recorded via computer.  When the nerve near my left eye received an electrical shock, the signal travelled from the left side of my face to my brainstem and back up the right side of my face.  This is what is supposed to happen.  When the nerve near my right eye received a shock, the signal travelled down the right side of my face and then stopped – there was a complete absence of a signal on the left side.  When this pattern of results occurs, she explained to me, it is usually an indication of a problem with the brainstem, something in the brainstem is blocking the signal.  Because she said “usually” I asked what else besides an issue with the brainstem could cause this to occur and she repeated her answer: “usually it is a problem with the brainstem.”

I won’t lie, this really stressed me out.  What could be wrong with my brainstem?  Is this what is causing all of my symptoms or just some of them?  And if it is going to get worse, what should I expect? Numbness I can live with – will I be able to live with whatever is coming? It is very easy to get caught in an endless loop of thinking and Googling, trying to figure out what is going on, what else I should be asking, wondering about what is going to happen next.  Or even just pondering with amazement what scientists and doctors have managed to figure out – that they have developed tests like this that can localize a problem with such precision, what we can learn about nerves and the brain through these tests (which seem somewhat medieval).

Now that I have been getting off and on this merry-go-round for what is going on five years, I am more and more cognizant of the fact that this is not an entirely productive use of time.  And so I meditate.

In meditating, I find two exercises in particular very helpful.  The first is a body scan – just scanning from head to toe, focusing on each body part and how they are feeling.  And I remind myself as I do this, that I am not in any pain and that – at this particular moment – I am thinking clearly and can do pretty much everything I want to do.  No matter what a particular test says or doesn’t say, my body is functioning reasonably well right now.  That’s a good reminder when the “what ifs” start getting overwhelming. The other exercise I do is based on an exercise I learned through the meditation app Headspace.  I imagine liquid sunshine is spilling into my body from the top of my head, trickling through my body to my toes, then filling my toes, my legs, my chest and arms, all the way up through my body until it overflows out of the top of my head.  I have adapted this exercise to imagine black flecks of disease scattered throughout my body. As the liquid sunshine fills up my body, it carries these black flecks up and out.  I try and remind myself that this is what I am trying to do with all of the tests, surgeries, trips.  Washing away the black flecks of disease.  It is a very calming and reassuring feeling and really helps change my perspective on this medical process – changing it from something frightening and invasive to something nurturing and healing.

This week, whenever I feel anxiety about what my upcoming scans will (or won’t) find, I will try and bring myself back to the present and remind myself I am not in pain.  I am functioning well. I am happy at home and at work – I am LIVING.  And I am slowly but surely figuring things out, finding the black flecks and hopefully removing them. I will take a deep breath and let the sunshine flow.


The more things change, the more they stay the same

It has been a long time since my last post and a lot has happened.  The short version is that I have had more tests that you can possibly imagine – rounds and rounds of blood tests, CT scans, MRIs, Octreoscans, endoscopies, sleep studies, EEGs, EMGs, nerve conduction studies, appointments with various specialists (2 endocrinologists, 3 neurologists, 2 oncologists, 1 allergist, 1 gastroenterologist).  And strange things keep happening but we don’t yet have any definitve answers.  So, in essence, nothing has changed.

So, here are my current symptoms:

  • Extreme flushing on occasion.  This is MUCH worse if I don’t take antihistamines and so I take a combination of H1/H2 blockers day and night.  I still have some breakthrough flushing but it isn’t all the time.
  • The usual GI symptoms which are not any better or any worse.
  • I am still smelling smoke but some new medications are helping with that.
  • Partial seizures. These manifest in a number of ways (including the smoke smell), but I will give you an example.  One night, M and I were sitting in bed and my right foot curled up completely, like I had a bad muscle cramp in my foot.  But I had no pain.  I could not uncurl my foot. This lasted a few minutes.  In the morning, my foot didn’t work properly for a few hours and then I was fine. There are other signs I am having seizures in my sleep too.
  • Raynaud’s phenomenon.  When I am stressed, my toes turn purple/black. And sometimes, I now get these weird changes in color on my feet – one half of both feet will become snow white while the rest remains a normal color, with a straight line separating the colors.  It is very strange, but there it is.
  • I have patchy pins and needles in my limbs and hands, especially on the right hand side. My tongue and lower face usually has a pins and needles feeling as well.
  • I am starting to lose a few words here and there.

Little Red Riding Hood has been leading the charge locally.  The last set of tests I had were last week – EMGs and nerve conduction tests.  The neurologist who did the tests was not a man of many words, but at the end of the first round of EMGs, on my lower limbs, he told me the results were basically normal.  If you have never had an EMG, it is an interesting test.  Small needles are put into various muscles.  Electrical activity is measured when the muscle is at rest and then you have to contract the muscle with the needle in it to see what kind of electrical activity results (while the neurologist twists the needle like he is trying to tune an old fashioned radio).   During the appointment for the upper body EMG, he did a physical first and discovered my triceps completely give out after applying resistance for a few seconds.  He and I were both startled by this, although I had noticed my arms were getting very fatigued when washing my hair in the shower.  But the EMG study of my upper limbs was “not very abnormal.”

Just as we were about to finish up, he asked me about other symptoms and so I told him about the numbness in my tongue and then added that the numbness was also around my lips and tongue.  He stopped and gestured in a circle to his own lips and chin and said “Here?”  When I confirmed he asked me to lay back down so he could do one more test.  The next test was a nerve conduction blink test. In essence, a set of electrodes are put around both eyes and a nerve that runs through the eyebrow area is shocked repeated. As the neurologist was conducting this test he started getting very quiet. Then started asking me questions, like “what other tests have Red Riding Hood and Neurologist 2 ordered?” and “has anything ever happened to your brain?” after which we had a conversation about my pituitary surgery.   Then he kept looking at the screen and intermittently administering shocks to my face.

When he took the electrodes off my face, I asked “so, how did I do?”  He just said “I have to look at the results more closely.  But there are abnormalities.”

Neurologist 2 (who I was referred to for these specific tests by Red Riding Hood) called me first thing the next morning. The results of the nerve conduction studies on my face appear to indicate a problem with my brainstem.  She and the neuroradiologist had gone over my last MRI in detail together and did not see an abnormality, but the (many) MRIs of my brain on file didn’t really focus on the brainstem, so she ordered a special study of just the brainstem with lots of fine cuts.  She also wanted to take a few nerve biopsies from my skin from various locations and is going to do that next week.

I also had some interesting lab results come back, thanks to Red Riding Hood who has become a NET expert this past year:

  • My serotonin was LOW, less than 10 when the lower end of the reference range is 56.  We are very unclear as to what is causing this but it is indeed strange.
  • My prostaglandins on last check about 8 months ago were 1.4 times the top of the reference range.  Now they are 2.5 times the top of the reference range.

Red Riding Hood is also a women of few words (my impression of neurologists so far is that they keep their cards close to their chests).  I have asked her before what she thinks is going on, and she has simply said “I won’t know until we do more tests.”  Since I have now seen her 4-5 times over the course of the past year, I am getting better at asking questions.  On our last visit, I instead asked her “what is in the set of differential diagnoses for me?”  She said she thinks it is a paraneoplastic syndrome from an occult cancer that we haven’t found yet/a NET.  Which is what I think too.

My last CT scan at the NCI in August also showed a new hyper vascular lesion in my liver, but it was very tiny.  Is that where it is? Or is it on my brainstem?  Somewhere else? I really wish I knew so we could do something about it instead of what feels like waiting for whatever this is to get worse to a point of no return.  I can live just fine without a parathyroid, part of my pituitary, and without my thymus. I need my brainstem.

Although my current symptoms are troubling, they are not disabling.  I can still work and socialize and completely joy life free of limitations (except energy at times).  But over the course of the year, things have definitely been progressing.  What if the next progression is not so kind?

This feels so much like the first few years of being sick all over again. Strange symptoms slowly progressing until I get really sick and we finally find the tumor. Surgery, recovery, new strange symptoms, and start the process all over again. Some days, I get very discouraged and depressed about this. Most days, though, I remind myself that I have the ability to adapt and I can find a way to make this manageable.  Being around positive and supportive people helps.  Meditation helps.  Just repeating to myself every morning: “I am not in pain, I can think and speak clearly, I can work hard, I can do everything I want to do” helps a lot. And the good thing about all of this is that I do have the luxury of really cherishing this time, right now, when I am spending quality time with my family, working on interesting projects with a team I love, making plans for the future with my husband.  This time is so valuable, impending problems or not. But impending problems have been a great reminder of just how valuable this time is.

Next week is nerve biopsies and another MRI. In three weeks I am back at the NCI for another round of labs, CT scans and a PET scan.  With the current clues in hand and more tests coming, I am hopeful we are close to catching tumor #4 before he does too much more damage.