Taking It In Stride – brain cancer blogs – guest post

Updating my blog listings today, I found a thread.  And that thread ran deep.  It led me to a whole cache of blogs by brain tumor survivors. This is a mixed bag of folks as the different diagnoses run the gamut.  The group is also divided between adults as well as children, each group with its specific tumor types.  You might also want to glance at the section to see what I am trying to do to improve the Blog Lists, adding specific diagnoses, date of diagnosis, and other details.

So I thought it would be appropriate to select one of this week’s Guest Posts from the group.  This blogger writes from Canada on her meningioma experience at Taking It In Stride.  In this post she recounts what living the past year with a brain tumor has meant to her and her family.

I know one is supposed to update one’s blog more than say once in three months. I know this. But is seems like I got to the one year anniversary of my craniotomy, and life moved on without all things meningioma constantly on my mind. I guess I was just enjoying having other priorities and a normal life, although for some reason I spent an unhealthy amount of time feeling guilty for having made it to the other side without too much long-term or permanent wear and tear. Unlike many others I’ve come across on various meningioma-related websites, mailing lists and blogs.

However.

It’s a nice feeling, realizing that you no longer think constantly about this horrible mess that happened to you and that you no longer feel like you’re constantly looking over your shoulder, waiting for the friggin’ thing to re-grow or some other horrible thing to happen.

This is not what things were like at the beginning of last year, that’s for sure. Back then, I had just returned to work a few weeks earlier and had just passed the 4 months mark

Things improved as the year went on. I eventually was able to sleep through the night again. My energy levels went from frantic to what was normal for me before I ever began to be affected by the meningioma. I began to obsess about deficits, something I no longer spend a lot of time on. Yes, I can’t smell and sometimes it bothers me (a lot), and yes I have a bald spot – but mainly I’m back to living my life in a way that is probably very similar to how I would have had I never gotten sick. Most importantly, my kids have made it through this mess okay. I cheered the first time I actually forgot one of my monthly surgery ‘anniversaries’ – such a relief to not have all things meningioma front and centre for once! Things were going back to normal, for sure. So much so that I tried, albeit unsuccessfully, to ignore my very first craniotomy anniversary.

Just like everyone else who’s ever had a craniotomy, I also got a dent on my head at some point last year. Not exactly on the scar, but in its vicinity. I still don’t know why this happens, and have heard various theories around it, with the most common being that it’s due to muscles having been damaged or contracted. It doesn’t hurt and seems to be a normal development, so it’s almost like the secret handshake that firmly puts you into the post brain surgery world.

Early recovery was nerve-wrecking, exciting, and slow, very slow – but over the course of the year, the immediate physical and raw emotional aspects started to be replaced by the returning feeling of normalcy. It’s not that I’m feeling 100% normal all the time and never think about this mess anymore. I do and sometimes also worry about future MRIs, but it’s become just one part of my whole life and is no longer that over-arching shadow I can’t get out of. I also still get unpleasant and unexpected reminders that emotionally I’m not entirely past this, but overall, I’m back to living my life. My life that happens to include a meningioma, not my meningioma-ridden life. This was, of course, helped along by having a clear MRI and a very uneventful appointment with my Dr. Hotshot, but probably also by the mere passage of time.

It took a while for us to get back to being the tight little family unit we were before this begun, and especially our little one had problems. But now things are pretty much perfect with us – our eldest sometimes still talks about the time she spent with the grandparents when “Mama was… you know, when she had that meatball in her head”, but matter-of-factly, not upset or freaked out. She seems to have retained some fond memories of the time she spent with her cousins during that time and continues to be much closer with her grandmother than she was before. She’s no longer scared that I might not come back to pick her up from daycare one day and is doing well in JK. The little one no longer is upset when I look after him rather than Papa, and finally got over his reluctance to spend any time at all at his grandparents. He spent the better part of 2009 being scared every time we went to visit them and wouldn’t let his grandmother, the person who cared for him the most in that first horrible month after my surgery, come near him or even look at him. Yet when we went this past Christmas, he was perfectly fine there and no longer cried or came running every time she came near him or tried to talk to him. A return to normal relationships for him, and this, more than anything, makes me happy.

The one thing that I still do think about a lot because I notice it on a daily basis is that my memory is definitely not what it used to be. It started out with word finding issues. Not severe enough to really cause problems, but noticeable to me. That seems to have gotten better recently, but it also has been replaced with not remembering people’s names. Not my friends, family and co-workers, but names of authors I like, news anchors, actors, more distant acquaintances, etc. According to the nice oncologist who facilitated the quality of life focus group in which I participated to help big fancy hospital sort out what exactly happens after skull-base tumours are removed, I am not yet old enough for this to be the normal effects of aging. My hope is that since the word finding troubles seem to be gone, the name finding issues will also resolve themselves. On a similar note, I spent the better part of the year having weird very quick-onset headaches. Sharp shooting pains that never lasted for long, but still brought back reminders of the time immediately prior to diagnosis and then surgery. Fear of recurrence, as well – but these days they happen less frequently and I can go weeks between them, when it used to be daily or at least a few times a week. So at least there’s hope that this is also something that may be temporary. But who knows, this whole recovery process seems to be a bit of a mystery. It goes very differently for everyone, the healing process takes time (and I’ve heard everything from a year to up to 4 years, so I’m not even sure as to how much change I can still expect), and you just don’t know how you’ll end up.

So yes. I now know that there is life past meningioma. It wasn’t always easy to get here and I know I have been lucky, very lucky. But I am here. I am here to see my kids grow up, to be a mother to them. I am here to be a friend and a partner to The Husband. I am here to be a friend, a daughter, a sister. I am here to be… the list could go on and on, but you get the picture. I am here. And not only am I here, I am better than I have been since I first started, unknowingly of course, showing signs of this thing in my head.

Life is good.

from: Taking It In Stride

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

Comments

Taking It In Stride – brain cancer blogs – guest post — 1 Comment

  1. Hello,
    I am a brain tumor survivor. Since my tumor was undiagnosed for nearly ten years, almost died last year. The location of the tumor was on my frontal lobe and affected my behavior and emotions. I had to quit my teaching job as I was clinically depressed. Thank goodness the tumor was not cancerous and my recent MRI showed no new growth.
    I have an encouragement blog you might want to visit.
    http://weepingintodancing.wordpress.com/

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