Hope for the best. Prepare for the worst.
Last week showed us how quickly things can go bad. That we fool ourselves when we think we have plenty of time ahead of us. We still do not know for sure what caused the dramatic decline over a period of several days. Rash and dry skin are common side effects experienced by most patients on Tarceva. But the rash burned, and skin peeled from fingers, and the dryness aged me ten years overnight… no matter how many times a day I lathered myself with special moisturizers, or bathed with Aveeno bath therapy. My mouth was dry. The cuticles of my fingernails became inflamed and bled (nail toxicity). It was far more than ordinary side effects of Tarceva. I coughed up blood. I could not sleep, lost my appetite, and became so weak and listless that Bob called the nurse’s hotline for advice on Friday. It was decided that I stop the Tarceva and begin a round of antibiotic to fight any infection that I might have. The improvement was almost as dramatic as the decline had been earlier.
But on that worst day, both Bob and I faced what no doubt we will have to face sooner or later, decisions about living and dying… who to call, preparing a will, and what kind of burial I want. "If I die before May, take my ashes up on the hot air balloon ride." It was an e-mail from a relative that made me realize that it is time for me to start designating who gets what from my estate… to have it all down in writing. It is hard to think about these things when I am trying so hard to live. There is still every reason to believe that the Avastin, and even the Tarceva, are successfully keeping my cancer from growing. There are reports of people living five and six years with Avastin. So we hope for the best, while preparing for the worst. It is an awkward state of being.
Monday I see the nurse for an assessment on my skin condition. Then the decision is to be made about restarting the Tarceva, possibly at a lower doseage. Bob’s sister Tracy will be arriving from Pittsburgh for a brief visit with us. It will be fun to show her our favorite spots in Bellingham. And of course Village Books in Fairhaven and a bowl of African peanut soup at the Colophon Café.
... P. L. Morningstar
But on that worst day, both Bob and I faced what no doubt we will have to face sooner or later, decisions about living and dying… who to call, preparing a will, and what kind of burial I want. "If I die before May, take my ashes up on the hot air balloon ride." It was an e-mail from a relative that made me realize that it is time for me to start designating who gets what from my estate… to have it all down in writing. It is hard to think about these things when I am trying so hard to live. There is still every reason to believe that the Avastin, and even the Tarceva, are successfully keeping my cancer from growing. There are reports of people living five and six years with Avastin. So we hope for the best, while preparing for the worst. It is an awkward state of being.
Monday I see the nurse for an assessment on my skin condition. Then the decision is to be made about restarting the Tarceva, possibly at a lower doseage. Bob’s sister Tracy will be arriving from Pittsburgh for a brief visit with us. It will be fun to show her our favorite spots in Bellingham. And of course Village Books in Fairhaven and a bowl of African peanut soup at the Colophon Café.
... P. L. Morningstar
posted by Looking for Hope | 7:13 PM
1 Comments:
I am so sorry you're having such difficulty with the Tarceva. Perhaps a lowered dose is an alternative. My friend did reduce her dosage by half for a period of time, then gradually increased it until she got back to the regular dose.
You're in our thoughts and prayers; please let us know what the nurse advises.
Post a Comment
<< Home