Saturday, May 11, 2013

What is it like to fight stage IV cancer?!?

I read this yesterday and I wanted to share it with the people who read my blog.  I feel this puts into words how chemo changes when fighting a stage IV disease.  It is definitely a marathon and an art.  We are in it for the long haul so we can stick around for our families...but if the side effects put us on the sidelines of life then what is the point.  So here is the Facebook note that explains things better than I could ever imagine

Dear Everyone,

My great news is that the chemo that I am on (Doxil) is working. The ascites is GONE and my belly is flat, my digestion has improved so significantly that I can eat normal quantities and no longer do I randomly puke when I had planned on doing something entirely different with my time. When treatment works in this dramatic way, it is nothing short of a miracle. Three months ago I was so debilitated that I had difficulty with basic daily routines. In contrast, I am in fantastic shape. It is hard to express what it is to be "going down" and then miraculously bob back up to the surface. It's the ultimate in second chances and for anyone who has ever had one of these experiences, whether it was physical, emotional or spiritual, you remember. It goes without saying that my gratitude for this drug is immense.

But before you lift Doxil up on your shoulders and sing what a jolly good fellow he is, let me tell you that at my IV League support group meeting yesterday, we nicknamed Doxil "The Asshole Drug". It is by far the roughest chemo I have ever been on. Two weeks after my last treatment, I developed burns on my thighs that made it painful to sit, stand, walk, or sleep. Once the burns started, they became increasingly severe each day. It was as if I had the worst sunburn ever and then doused myself in suntan oil to return to the beach every single day for another two weeks. I used every numbing spray, every lotion and potion from aloe vera to silver sulfadiazine to lanolin to urea cream. (Don't ask me whose urine it was. I don't know!) The only effective treatment has been icepacks and time. My friend who is also on Doxil gets burns on her palms and the soles of her feet that are so severe that she is bedridden for six days out of the four week cycle. She describes the feeling as "walking on glass". We swap war stories and we both feel incredibly lucky to have someone to compare notes with. There is tremendous power in not feeling alone. This I have learned.

So in spite of my declaration that Doxil is the asshole of the chemo world, it is like an aggressive sales person who you wouldn't want to hang out with, but is undeniably successful. Had I never had symptoms of cancer perhaps I would say, "To hell with it! I'm not putting this poison in my body!" But I have been near the bottom and I know what that looks like now, so I will stay with the asshole because the payoff is golden. The guy knows how to get things done. And yet we must be cautious to balance between dangerous side effects and effective treatment. To die of a skin infection would just be outrageous so we tread delicately and observe closely.

And now the balancing really begins: With Dr. Kampe as my co-pilot, we will try our best to reintroduce the drug before the cancer starts causing symptoms but after good healing has happened for my skin. We will try to give enough of a dose so as to be effective but not so much as to cause side effects that can be potentially life threatening. We will do our best to observe whether this is acting like a toxicity issue or more of an allergy. We will follow the science and we will follow our intuition, all the while understanding the need to be open and flexible, as my body gives us information on which direction to go.

And once again we recognize that treating  Stage IV disease is often far more of an art than a science.

A quote that keeps popping into my mind lately is from Rabbi Nachman: 

"The whole world is a very narrow bridge and the most important thing is to not fear at all." I'm not sure if truer words have ever been uttered.

So onward we go. Straight ahead. One step at a time we don't look down. We can do this!

My chemo confidante

See so eloquently explained.  in the comments on this note it was also decided that our chemo regime is a tad like a marriage.  Maybe an abusive marriage that at times all I wish is to escape, but a marriage none the less.  And as said in the comments this one is definitely a "til death do us part" type divorce as an option...unless death is the goal.  I have often wanted to give some sort of insight into how it feel to battle this disease and I think this does that for me.  So read and enjoy...I will post something original soon...I swear.
To the moon and Back,

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