Post

I Keep Feeling Like I'm the Punchline From Kindergarten Cop

It IS a brain tumor.

It all started out innocently enough when I started getting really horrible headaches about two years ago.  I have had migraines since I was eleven, so intense headaches weren't out of the norm, but I'd never had any quite like this.  Six months of inconclusive testing later - and that at a world-wide recommended facility, a friend referred me to a neurologist at another hospital. One MRI and lab test later confirmed that I had indeed had a brain tumor (which I still refer to as "things in my head" - yes, I suppose it is a rather futile attempt to desensitize myself to reality, but c'mon - who's keeping score here?).   I've undergone both gamma knife and accuray stereo-tactic radiation and while results were optimistic at first, nothing has had that panacea effect I'm still hoping for.  I'm currently taking Temolzolomide (Temodar) which is a chemo treatment that crosses the blood brain barrier and along with radiation seem to having positive effects so far.  Keeping fingers crossed.

I know there are others out there with similar conditions, or at least facing similar challenges to getting through day to day activities.  I'm still working a flexible full time schedule, making up hours if I miss them and able to go to appoints as needed.  I tried going on a paid medical leave, but got so depressed, I wanted to go back to work and have a least some semblance of normalcy (is that a word?).

I find myself hiding from my friends, family and co-workers a lot, lately.  I avoid their phone calls and e-mails.  It's not that I don't appreciate their thoughts, but is more that I don't know what to say back. Everyone asks "how are you doing?" and while I sort of nod and mumble 'okay' I'm really thinking "I have a brain tumor, how do you think I feel? Sheesh."  So I keep a lot to myself, my appointments, my "trial and error" treatments, my irrational and rational fears...  I feel that I'm the one going through this, albeit unwillingly, but I don't have to subject my friends to the same abject fear that I'm constantly struggling with. Anyway, this was just my attempt to give an escape route to get what I'm experiencing and feeling.

 

 

dreeemr2 dreeemr2 36-40, F 8 Responses Oct 9, 2008

Your Response

Cancel

I admire your guts and strength, this must be a bastaxd of a thing to live with. I know somewhat because I live with severe chronic fatigue and crushed muscles in my calves, (not related) but just bad luck. I wish you the world on a plate and want people to realise how lucky they are to be well and complain and argue about such petty things!

you were one of the most amazing people I have ever met. when your light went out it truly made the world a darker place. miss you and wherever you are now, I hope you know how loved you always will be. I know I will see you again some day - second star to the right and straight on until morning!

Hi dreeemr2,

I didn't know anything about brain tumors until 3 or 4 months ago when a young man of 26 came to stay with us in our B&B in England. He was told he had an inoperable tumor and was given thee months to live in England nearly three years ago. He went to America and had an operation followed by chemotherapy.

He used to work as a trader in the London Stock Exchange and earned a large amount of money. He now works from our B&B on the internet. He has given us such joy in our lives because he just refuses to be downhearted and depressed. He is still planning for far into the future and his optimism is like a beacon of light.

You also are a glowing example to all those people who bemoan their lot and don't realize how lucky they are.

I don't know what the future holds for our young man but we shall always have a place for him in our hearts just like all the many people who I am sure have a place for you in theirs.

You have all my sincere admiration for continuing working through your very difficult times.

Richard.

I am here 4 u. The stages of emotion never quit changing but you will grow with each one. My son goes out of state with me and goes through everything with us and when I went through some memory loss I would quote the movie as a quick antidote when I seen the concern cross his face. But in reality its hard to admit it is what it is. our prayers are with you.

Dreeemr, like susanjay I found your profile through another thread and send you my sympathy, prayers, and best wishes. You know by now that illness has an impact. People (others, but also yourself) can act weird in an attempt to escape the fear around illness. Good work trying to keep on with your life - it is YOUR life, and you need to do whatever you need to in order to take care of yourself.



It's ok to hide, if that's what you need to do. But most people find it helpful to have at least one place where hiding isn't necessary. Some friends will actually regard it as a blessing to share what you're going through. If you get part of your care through a hospital, you might look up one of the chaplains - they can be a great help in simply being with you, whether it's with the fear, the hope of healing, the discomfort, or even the surprising joys you will likely encounter.



I'd be happy to talk further if you'd like.

Dreemr, I had not come across you before- but I was commenting on another story and saw the link to this one. I couldn't leave wihtout wishing you strength and the best of fortune in your fight against this thing.



Like the first poster said, let your friends and colleagues ease your burden if they can. People get scared by feeling helpless in situations like this, so if you let them pitch in you will be empowering them (if that makes any sense, I am also not very good at expressing feelings in awkward situations.)



Best wishes once more x

Thanks so much for the reply. It's kind of nice to know that I've connected with a "real live human being" (which is better than having to press 0 repeatedly to get to one on a voice response system).

I cherish the clumsy efforts made by friends to console or give advice, the part that gets to me is that scared, hurt look in their eyes. I can't bear that it's me that is putting it there. Does that make sense? Probably not... but that's not unusual for me ;-)

I am so sorry you are going through this. I admire your desire to maintain some "normalcy" (and no, that probably won't be a real word for some time.) Maybe you should give your friends a chance to share some of your abject fear. They may not always say the right thing or what you need to hear but I hope you can forgive some of the clumsy efforts they make. Their intent is in the right place. Of course they will never fully understand what you're experiencing but it may help ease the burden for you a little. Good luck to you, my friend.