I Should Have My Head Examined. . .

Oh wait, I did. After months of intense and constant thirst, I finally saw an endocrinologist. He diagnosed me with diabetes insipidus, which is when the pituitary glad doesn’t send out the hormone signals to the kidneys to tell them to regulate hydration. He prescribed me a nasal spray that replaces the hormone, which has brought immediate relief. Of course the question was, why is the pituitary gland damaged?

I was hoping it was from the TDM-1, since the symptoms started at the same time. But, no such luck. Yesterday’s brain MRI shows a lesion in my pituitary gland that is causing the whole pituitary stalk to swell. Brain mets have always been my worst fear. But now the day has come and I guess I have to deal with it.

Chemo typically doesn’t cross the blood-brain barrier. So the treatment will probably be gamma knife radiation to the spot. I’ll find out all of those details after I meet with a radiation oncologist, which should be in the next few days. He or she will come up with a plan, I’m sure. And it’s only one little spot. But it still scares the crap out of me. 

The rest of my mets are fairly stable so we are going to continue with the TDM-1. I don’t know if I’ll be able to stay on the trial now that I have a brain met, but I’m sure I’ll hear about that soon. I can still get TDM-1 even off trial because it’s been approved.

In all of the stories that I hear in groups or on message boards, brain mets are always the beginning of the end. I’m not even sure if I’m all that worried about the end coming sooner than I’d hoped. I’m more afraid of additional brain mets and what that might mean. Will I lost my sight? Be unable to walk? Lose memories? Have my personality change?

Right at this moment, I should focus only on the met I have and not worry about the ones that haven’t appeared yet. The pituitary gland met is small and can be radiated. Unfortunately, the pituitary gland regulates a lot of the body and radiation will likely damage it some, so I will have to take more medications in the future to fix those problems. It’s a lot to take in. 

I’m so sick of all this. And please please please, I know you mean well but PLEASE don’t tell me that I’m a fighter and I’ll beat this. That whole bravery metaphor just burdens the patient. There’s no way for me to “beat this.” I’m doing the best I can to enjoy the time I have left, and the pressure to somehow “win” over cancer is maddening.

12 thoughts on “I Should Have My Head Examined. . .”

  1. Thank you Karen for your realistic and honest update. You have been an inspiration. May your remaining time be very special in ways not yet imagined. Somehow, someway; Fresh Joy.
    Sue Wuhrman

  2. You may not remember me, but I do keep up on your news. And I agree: you are and have been an inspiration. AND you have every right to be angry. and frustrated. and sick of the entire endless treatment drill. I am hoping you get some good time. With family and friends, books,
    animals, fresh air, ……..whatever else makes your heart soar. jania nelson

  3. We appreciate your blog as well, Karen, you help us to learn and to know what to pray for!
    Maybe we’ll see you at Whidbey over the 4th? Get your feet in the sand… and have a s’more? Bill & Barb

  4. LIVING in the moment is something many of us strive to accomplish but few of us ever achieve. We can all say how we may deal with something if it ever happened to US but truthfully, no one knows how we will deal with anything until it does happen. Your willingness to share your experience (and I mean ALL of that experience) helps those of us who are willing to go there with you by giving us the opportunity to practice appreciating each moment we live. I say, “practice”, because achieving that is easier said than done. Thank you for the example you continue to give on how to LIVE each moment the very best you possibly can in spite of overwhelming odds.

  5. Karen, Nancy Manseth just sent me your Blog and I am so thankful to her. I was touched by this latest one and I will read all your previous ones. Your mother and I are friends through Nancy and I have been kept up to date somewhat regarding your illness. I thought you did a fabulous job with your television interview a few months ago. Please know you will be in my thoughts. Love, Betty

  6. Dear Karen, No, I am not going to tell you that you are a fighter and that you will win. I know myself what a burden that can be. Being strong has its down side also. I am going to tell you how much we all love you and pray for you. Prayers that you will find the strength to do what is necessary for you to be yourself. Love, Gail Layman

  7. All i can say is my thoughts are with you. Enjoy life while you can because we all really have no idea how much time we have left!

  8. Karen, I, too, am a good friend of your Mom and Nancy – I can’t begin to express my thoughts on your comments over these past two years. As a Mother, it scares me so much to even think of surrounding a child with cancer. It makes it hard to take a breath. As a “current” survivor of colon cancer – one year “free” – a ways to go, I can’t express the thoughts that go through your mind as you travel these odd days. If anyone had ever asked me if I was apprehensive about walking into a cancer clinic for 5 hours of infusion, wearing a pump for days, etc. I would have melted – any yet it happened. I wish and pray for a calm for you, for a time to take in all that has meaning and gives you joy. I will continue to keep you on my long list of people I pray for every night. You are blessed to be surrounded by love of family and friends. I sincerely hope their touch comforts you. Marilyn Attinger

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