Excuse me, you're blocking my view!

Picture this…you are sitting in a crowded theater and someone wearing a really tall hat, or someone who has really big hair, sits down right in front of you and blocks your view. Or, you are standing in a crowd of people, all squished together where movement is nearly impossible, just so you can get a glimpse of someone or something you’ve been longing to see. You can’t possibly move but somehow THE tallest person in the crowd manages to maneuver themselves to stand right…in front…of you. Irritating, isn’t it? So irritating when someone, or something, is blocking your view. I recently stayed in a hotel in Houston and I looked out my window from the 11^th floor thinking I was going to get a beautiful view of the downtown Houston skyline on a sunny, blue sky, summer afternoon. I pulled back the curtains to get a look and I got this…

This is what my life feels like at this time...like something is blocking my view. I can’t see anything else but the illness that has circumscribed my life. When you are ill and no one knows exactly what is wrong with you, the waiting is irritating and time passes slooowwwly. My life is in slow motion. Living life on my terms has been put on hold for months now. I’m living life according to the limitations of extreme fatigue, pressure headaches, dizziness, nausea, and blurry vision. I’ve had constant pressure in my head for so long now that I am beginning to wonder what normal feels like. I’ve forgotten. Seriously. I wonder if the pressure were to be relieved if I would notice anything changed, or perhaps I would feel like I have never felt before. I don’t know. I hope I will soon find out.

I’ve had a third consultation with a neurosurgeon, Dr. Dong Kim, Director of the Mischer Neuroscience Institute at Memorial Hermann Medical Center, UT Health Sciences Center in Houston. Dr. Kim is a firm believer that for some patients, pineal gland cysts can be symptomatic and removal of the cyst is the only way to resolve symptoms. It seems even with what he knows about pineal gland cysts, and how in alignment most of my symptoms are with that diagnosis, he isn’t absolutely certain the cyst is causing my symptoms. And I’m happy that he is honest about it. I certainly do not want to undergo brain surgery only to find out it didn’t resolve my symptoms. Admittedly, I presented on self-referral to Dr. Kim earlier in my path to a diagnosis than most patients he sees for symptomatic pineal cysts. Most patients have suffered for years, treatment after treatment, diagnosis after diagnosis, everything else failing only to find out the pineal gland cyst they had been told was incidental and asymptomatic was actually causing their symptoms all along (because excision of the cyst resolved their symptoms). I, however, being the researcher and educator I am, did not want to go down that long road of treatment after treatment, diagnosis after diagnosis, only to find out the answer was the cyst. So I jumped over years of failed treatments (after realizing doctors were trying to diagnose me with migraine headaches, which I know I do not have) and went straight to the source. The part about my presentation that is most curious to Dr. Kim is that we know that the cyst was present in 2009 on an old MRI, and it was only slightly smaller then than it is now. And although I know I had slow onset of blurry vision and memory/cognitive complaints over the past couple of years, and slow onset of pressure headaches and nausea over the past year, something happened in February that changed all of that…something that made my symptoms come on strong and not go away. And he can’t seem to explain what changed all of the sudden that brought this on. So with those two things combined, he wants to be sure. I respect that immensely. And he expressed admiration for my research and desire to treat the problem, not just the symptoms.

Dr. Kim proposed a plan in alignment with the second neurosurgery consult I received at University of Colorado. He agreed that I should first get a lumbar puncture to measure the pressure in my cerebrospinal fluid. If the pressure is high, and if removing a significant amount of fluid results in an improvement in my symptoms over a period of a couple of days, then he feels the diagnosis is more likely pseudotumor cerebri (false brain tumor) and the appropriate course of treatment would be placement of a brain shunt to control CSF fluid pressure (which I can have done at the University). If, however, the lumbar puncture is negative for pressure, and if my symptoms show no resolution over the next day or so, then he feels the likely diagnosis is a symptomatic pineal gland cyst and he would offer me the surgery to remove it.

The lumbar puncture is scheduled for this coming week. By the end of the week, I should have an answer that will tease apart these two diagnoses. One more week and hopefully my view will clear up nicely, both figuratively and literally!

Finding Peace in a Most Unlikely Experience

It sucks to be sick. There, I said it. It really sucks to be sick. It sucks when I can’t make plans for today or the next day because I don’t know if I will feel well enough to follow through with them. It sucks when sickness goes on and on for months, essentially shutting down my life. It sucks that because of illness I have become less and less active, which in turn contributes to my being more and more sick. I’m not moving my body enough, not getting enough enjoyment out of living, not leaving my house enough. It sucks when life becomes smaller and smaller, and when people stop reaching out to me to do things with them, and when I stop reaching out to others. The fatigue sucks because I don’t feel like I did anything to be fatigued by, but maybe my body is fatigued from trying to manage the effects of a brain mass. It sucks that my husband had a commitment to work in Brazil for five weeks right in the middle of my dealing with illness…mostly because he’s my best friend and I want my best friend beside me for strength…and hugs…when life is majorly sucking. It sucks that we’ve been planning for more than a year to make a two-week trip abroad in July of 2015…a trip that can never be planned in quite the same way, or with the same people, ever again…and now I have to face the reality that the trip will likely not occur for me.

And it really sucks to not understand what is happening with my brain, mainly because I’ve been seeking answers from doctors who don’t understand what is happening with my brain. If brain surgeons don’t have answers, that begins to feel pretty hopeless…frightening, in fact. As an update, my second consultation with a brain neurosurgeon resulted in another "its not the cyst" conversation, but at least the willingness to explore what is causing the intracranial pressure by ordering a lumbar puncture to measure the pressure. Assuming it is abnormal, they would recommend placing a shunt in my brain to control flow of cerebral spinal fluid and thus decreasing the pressure. My primary care referred to this plan as treating the symptom and not treating the cause. But I digress. This post is about finding peace in a most unlikely experience and taking the post in that direction is far from peaceful.

In the midst of everything feeling sucky and scary, there now come these moments of peace, moments of clarity, moments of almost euphoria. I’m not dealing with a terminal illness, at least not that I know of (not so sure the answers I’ve received thus far are without-a-doubt accurate ones, but for now we are going with a belief in a “benign cyst”). Yes, I am grateful for this. Cancer sucks MORE than a benign cystic brain mass for sure! But there are degrees of suckiness. Any kind of abnormal thing growing in the brain is not a positive thing. Certainly one that sits deeply in the center of the brain that is not easy to remove makes an impact on the brain and its functions…the gray that matters to me. This I know to be true because I am living with the symptoms from it.

But the peace, the clarity, the euphoria? What is that all about? I’ve been trying to pay attention and now I realize there are certain benefits to having your life get smaller and smaller. I know, it sounds like such an odd paradox but this is what I’m experiencing. For one, when your life gets smaller and smaller, you become more and more in the moment. I’m not thinking about something in the past, nor am I worrying about something in the future. I’m typing these words, right here, right now…fingers hitting the keys. I’m washing a dish, feeling the warmth of the water on my hands and focused on the goal of getting the dish clean. I’m petting my dog, feeling the softness of his fur on my hand, and watching as he reaches up to place his paw on my leg, as if to reciprocate and pet me too. I’m laying still and experiencing intense nausea and trying not to throw up…and nothing else is going on. Nothing. Just the experience of the nausea. Nothing needs to be done. Nothing is waiting for me to do it. No one is needing me. No one is waiting for me. The mass sits quietly in the center of my brain and it doesn’t ask anything of me. Just…BE.

My definition of misery is wanting something to be different than it is; the belief that something is not right and needs to be changed; not accepting the status quo. You know, like having a brain cyst is misery because it isn’t supposed to be there and it has to go and its make my life suck. And because I hold that belief, I am spending every waking minute focusing on the “not wanting” of the brain mass and pretty soon I am in misery…misery because I want something to be different than it is. So far, I don’t have a lot of control over whether or not the brain mass is there. And maybe I never will have a choice in the matter…MY gray matter. What if, let’s say, I exhaust all reasonable consultations with brain surgeons and the result I hear is “you have an inoperable brain cyst.” Or what if I find a brain surgeon who says “This cyst MUST come out,” but my insurance company denies coverage (a very real possibility with the apparently rare symptomatic pineal gland cyst in my brain). What then? I’m still sick. I’m still losing my vision. I still have short term memory loss and decreased cognitive function. But given those circumstances, I would have to find a way to “live” with it, wouldn’t I? And in that case, I could either focus on the misery of the situation…wanting something to be different than it is…or find some way to accept what is. Or, let’s say, the brain surgeon offers me an operation to remove the cyst but the risks are too great for me to accept, or I’m unwilling to accept what it would take to recover from brain surgery? Because of course that is still my choice to make if the offer is made. My gray matter, my choice. What if I came to the belief that everything is just as it should be and nothing needs to be changed? What if?

These are the thoughts that come to me…that I will indeed be faced with choices...some type of choice to make at some point. And when I realize this, I feel this sense of peace. What if I choose to perceive it differently, believe differently? Can I say definitively whether it is a blessing or a curse? Something I am destined to experience, or something I let destroy me? And then the euphoria comes and I’m peaceful in that moment. No fear. No misery. Nothing to do. Nothing to change. Only to BE…BE present in this moment. The only moment I have because all previous moments are gone and the future ones have yet to come. Only this moment and I’m totally in it because I have nowhere else to be! And that is peace.