Wednesday, November 20, 2013

Ahhh What A Good Little Tumour

Results are in, no regrowth.  As you can imagine that is the best news someone with a brain tumour can get.  I kind of figured as much as I didn't get a call the day following my MRI, at least the no call meant nothing drastic was going on in my head.

Dr. Mulroy is a kind soul who is suited for what must be a draining job.  He answers all our questions, shakes your hand and a feeling of genuinely wanting to be in your presence is evident.  A rarity in the Doctor world I find.  So if I have to have a radiation oncologist I'm glad it's him

So here is how the appointment went.  He said there was no change, which is good, and then some silence.  I immediately pipe up and said I'm sensing a "BUT"?  He very quickly said, there's no "but" it's good and showed us the comparison of my last scan to this one.  I like to see my scans, it's my tumour and I want to look at it.  He said that if the tumour was acting up I would have symptoms of tingling and/or numbness in my face or diplopia (double vision)....UMMM I have those, they are wonderful left overs from my surgery.  Hmm yes, yes you do was the response I heard and again he said that those are the things we would look for if the tumour was growing.  Brain "shut down" happened as I try to process this information...well if this is what you look for and I already have it...then where does that leave me.  I know that T Jay is asking questions but I have no clue what it was as I come back into the reality of "pay attention Kelly"  He said that he thinks we should adjust and change medications to try and calm the trigeminal neuralgia down.  Now the great news about having about only 95% of the feeling on the right side of my face is that I get shocked many times a day but prior to surgery the shocks to my face would have been about a 12 out of 10 on the pain scale.  Now they are about a 4/5, certainly a pain that's highly annoying and lets face it, they suck, it's exhausting to be snapped in the eye and teeth over and over again every freaking day but face numbness has been a benefit here.

So ok great lets increase and change the meds.  Since I am highly sensitive to meds we will do it 100mg a week AGAIN until things are under control.  Cool, I'm good with that.  Now, since there is no change in your MRI I think we should get the meds under control and then chat about radiation in the new year, as starting anything now this close to Christmas...........................and that was the last thing I head for a few minutes.  A Charley Brown whaa whaa whaa whaa whaa moment kicked in as the dreaded Christmas word has once again come into play in my life.  Now don't get me wrong do I want to jump on the radiation train full speed ahead?  Umm NO, but how my type A personality works is this...very simple...Kelly has a brain tumour, not all of it was removed, the hospital has radiation, if the hospital zaps Kelly's tumour, Kelly is all better and we just move on getting life back to normal, Kelly is fixed.  Doesn't that sound right?  So as the lump forms in my throat and my face feels like it's so red it's purple with frustration.  I can't stop thinking "why Christmas, why do you hate me so much"  I'm now back listening to T Jay and Dr Mulroy talk and I hear, that the radiation odds are only about 30% for relieving my symptoms....umm what?  What happened to my theory of zap, fix, move on?  I hear that he will call me in January to see how I'm feeling with the change in meds and we will look at the radiation either then or after my next scan in May.

Next comes what I like to call the "sobriety test" walk in a straight line, then heal to toe, close your eyes, all the things that I spent months at the Balance and Dizziness Clinic perfecting.  I've got this I think, watch this...I stand up and what happens, I stumble, like a drunken fool and I instantly am mad at myself for not being able to show off my new and improved skills.  I suppose if anyone is to see the fact that you still tip over it's your Doctor but we all want to prove how good we are at something.   I do however, feel the need to say that I've gotten so much better because of the help from the Clinic.  So once again the brain vs. Kelly didn't go my way and the brain decided that it was at that exact moment to do the two step.  grrrr

I ask about work, life going back to normal, when when when, and basically state that I'm done with this recovery thing and don't ya think this is a bit excessive?  I was told 4 to 6 weeks I'm almost a year out and seriously what's the deal?  Some people take longer is what I hear and he has seen people improve even up to two years.  OMG is what I think.  Ok so work...lets get back to that, you are not ready is what I hear, you are still recovering and you need more time.  Lets give your brain  more time to heal.  OMG is what I think again, time time TIME TIME and then I can't take it anymore and the water works start.  The blubbering about time and my frustration with this whole thing is beyond and that I love my job and I miss it, and I feel there is a big part of me missing.....But you are not ready, is what I hear and a Kleenex box is gently given to me.   We will talk in January, lets see how the meds do and you are not resting, you need to get a restful sleep, I will send a letter to your family doctor...hang in there.

So, the great news, no regrowth, the great news, radiation on hold, the great news it's still a slow growing benign tumour.  The bad news, radiation is still in my future, the bad news is I still have a brain tumour, the bad news is it's still going to grow and now matter how much I play the Kelly vs Brain game, it's always going to win.  I realize that I am lucky that it's not cancer, I count those blessings everyday.  I do also realize that because it's not cancer, I have the luxury of waiting, hanging out in the system, a place I like to work in then go home, now I feel like I'm living in it, from home.  I am however, proud of my little tumour for behaving and not growing, if I have to have one I want one on it's best behavior.

The image below is my head, basically cut in half, the tumour is on the right, images are reversed on MRI's.  As you can see the white blob is what is left of my tumour, a MUCH smaller white blob then I had.  This guy has a nice little grip on my cranial nerves and is hanging out with my carotid artery making it "inoperable".  So I say ahhhh what a good little tumour with a slight sarcastic tone as he has taken up house in a crappy location but as long as he doesn't take out a mortage to add an addition he will remain "a good little tumour"



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