Wednesday, July 13, 2011

Not for Wimps

No sirree, this cancer in the brain business is not for the faint of heart.

This is just a quick post to let you know I am here and surviving, albeit very strangely for me. Please bear with the syntax errors and nonsensical statements that are sure to come, as I am struggling mightily to keep my wits about me. The best way to describe how I am feeling right now is as a very drunk person who is trying hard to be extra careful about how she moves and speaks so no one will know exactly how altered she is (not that I have any past experience with this from my college days or anything). I am in a mental fog that makes me feel slow, stupid and extremely frustrated and my physical dexterity has suffered greatly. Typing and texting (!) have become very difficult and I am very easily overwhelmed by too much information or decisions. For a multi-tasker like me this is very hard to take. I just know there is still a smart person here inside just waiting to break out again when all this is over.

The good news is plenty--I have now begun all treatments (Whole Brain Radiation, Tykerb--the medicine for HER2+ cancer that crosses the blood-brain barrier, Herceptin to manage the currently stable disease below the neck, and Decadron for the brain swelling that is causing most of my physical symptoms like numbness, headaches and balance issues). All the darts are now being thrown, so all I have to do now is survive the intense fatigue and stomach upset that comes with this cocktail. In four months we will scan the brain and see how we are doing. Until then, I just try to stay awake as much as I can and have quasi-intelligent conversations where I can.

So far, the Decadron is the worst, as it makes me extremely emotional and I am trying to not alarm people with massive mood swings. My oncologist warned me about this and told me the story of an really tough NFL player he recently treated for a brain tumor who required Decadron. After the medication he became emotional and weepy. He said the personality transformation he went through was positively stunning, but that ultimately he became a much nicer person. So maybe that will happen to me too!

For someone in my situation, my prognosis is a good as can be hoped for and there is a reasonable chance we can eliminate these lesions from my brain by the end of the year. Even if we can keep them stable or shrink them a little that is also good. So, I am praying fervently for the complete miracle, while filled with gratitude for my community that has surrounded me and my family. I will not be myself for awhile, so please bear with me and know that I am fighting the good fight and not losing heart or faith in any way.

I am beyond grateful for your support and prayers.

Finally, to those of you who have been so kind to send notes and other things, I want to thank you and let you know that I am not in a position to be able to personally respond to these things right now, but know I am receiving them and am truly grateful for your thoughtfulness.

5 comments:

antonia said...

Suzanne,
You are in my thoughts & prayers. I already posted your previous post on the brain metastases to our friend Sr. Maria, and I will print out this post too and send it to her.
You are in my novena to Our Lady of Mount Carmel (Sat).

GOD BLESS

Thanks for keeping us updated

love
Antonia
xxxx

Jason Schalow said...

Suzanne,
Let me interrupt the well deserved stream of love and concern to make an observation: It is somewhat disturbing to me that someone who has chemical and radiation induced cognitive disfunction and a swollen brain still manages to write more coherent blog posts than I do. Its disheartening. So if, in the future, you could maybe delete a few random words, sprinkle in some unnecessary capital letters and possibly add a couple of misspelled expletives for color, it would help me feel better about myself. ;-)

-Jason

Anonymous said...

Suzanne,
Love and prayers are continually flowing your way! If there is anything you need, please don't hesitate to ask.
-AO

Jennifer @ Conversion Diary said...

You are in my prayers!

Allaire said...

More prayers! More visualizations, light, healing. You are on every prayer list I can get you on, everywhere!!! Chloe and I include you in our every morning prayer together. Rosary too.