Reflections on Having a Brain Tumor

 

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    So how does one live with a brain tumor?  Honestly, I'm still trying to figure that out.  My doctor seems to think that it shouldn't be a big deal.  He's like, "See you next year!" and here I am trying to understand what that looks like.  I have this thing in my brain, embedded in my Cerebellum to the point that my surgeon cannot safely remove it. It *may* be affecting my vision, nausea, balance, etc., but really, we can't know for sure.  I guess the reality is that I should just go about my business, continuing life to the best of my ability, until I bump up against the tumor.  That might look like an appointment with an MRI to check its status, like I had a couple of weeks ago, or it might be symptoms that make me question whether the tumor is affecting things. I have no way of knowing when or if that might happen, except for a scheduled appointment of course, so I have to figure out a way of living life that takes that into account. 

    The reality is that I still have several symptoms/consequences from my previous surgeries.  I use an eye patch to limit my double vision, which impairs the vision on my left side making it so that I don't feel that I can drive safely, and it has begun to affect the muscles in my neck and back. It also limits my depth perception, so I struggle with going down steps or ramps and need help. The doctor hoped that the double vision would resolve on its own, but thus far that hasn't been the case. We have another appointment with them tomorrow where we are hoping to get a prescription for glasses with prisms that will make it so that I can see out of both eyes.  I'll tell you, I'm beginning to feel a little claustrophobic, like I'm walking around with a box over my head and I'm peeping out of a small hole.  This is compounded by the fact that my glasses are bifocals which, while it helps me to be able to see both close up and far away, further limits the little hole I can see through.  So, I'm hoping to get a prescription with prisms that will adjust for the double vision and then I will buy two pairs of glasses, one with that prescription and one with magnification for reading.  Ideally, this will allow me to drive which would greatly free up my husband.  He'd still likely drive me to appointments in The City, but it would let me get around our town for smaller things that I do more regularly. I look forward to this because I can see the burden that needing to drive me around has put on my husband. I don't mind having a chauffeur, but it interferes with his ability to work and that is important.

    I still deal with some nausea, though not nearly as much as when I was on IV antibiotics.  It mostly comes in the morning when I have an empty stomach. The other time I encounter it is when I exercise.  I've adapted by making sure to put something in my stomach right away when I wake up, before I shower or anything. I'm still sorting out the exercise part, but I hope to figure it out soon.

    Lastly is the fatigue.  It took me a bit to remember it because its become such a regular part of my days. I try to take a nap most days. I limit my activities and carefully way my energy choices. The spoon theory has become an even more important part of my life.  I am responsible for my energy and how I choose to spend it.  It is not taken from me. It is not out of my control. The hardest part is recognizing how little of it I have. It doesn't seem real, it doesn't seem plausible.  How could I really have to rest after just taking a shower or making the bed?  Surely I'm exaggerating all this, I tell myself, but the reality is that if I don't rest I crash. I can choose to rest or I can have it chosen for me.  So I rest.  A lot.  I get up and make a little breakfast, then I rest.  I take a shower, then I rest.  I make the bed, then I rest.  You get the idea.  There's a lot of resting happening, and not a lot else. It feels lazy.  It feels selfish. It also feels out of my control. I have no idea how long this will last, I never thought it would last this long. All I can do is work with what I've got, and try little things here and there to see if they are feasible.  Can I skip my nap every once in a while?  Yes, but then I have to completely rest in the evening.  If I take a nap, I can make my family a nice dinner though, and that feels like something worth while.

Here's the thing: I am not in control of whether or not I have my physical symptoms, but I am in control of how I manage them.  I can accept things as they are and plan my days accordingly. I can choose to rest so that I can do the things that are important to me, like making dinner. I can't make it all go away, but I can choose to work within it.