Well, we have boarded the next train in cancer treatment!
Had a great talk with my Doc with Gerry there, and decided that we would change the course of treatment. Silly me, I thought you could march into Walgreens and pick it up. Ha!
Tykerb and Xeloda. The wonderful pharmacist at Walgreens directed me to the Apothecary Shop and I was able to get both scripts on Friday afternoon. Tykerb comes only in 250mg size, and I am taking 1250mg at a time, so do the math, 5 large orange pills first thing in the morning with no food in my stomach.
Wait an hour, eat my breakfast, take three large peach colored Xeloda pills. Repeat the Xeloda 12 hours later, always with food. I've read through all the side effects. Sounds just like the disclaimers for every drug advertised on the television these days, so we'll wait and see. The Doc started me with a more moderate dose to see how I do, and he will step it up if I tolerate it all.
I take the Tykerb every day, and the Xeloda (for now) I take for 14 days, then 7 days off, then start over. I'll repeate the whole regimen 6 or 8 times. It's really just oral chemo. I'm happy I don't have to go sit in the chemo room for it. But I will see the Doc every 3 weeks.
The cancer is slow, Doc called it 'indolent'. It's mostly my lungs right now, the left lobe in particular. Still very very small. The activity in them is increasing however, and that's what we hope to nip in the bud. It's a good regimen; many of the other breast cancer metsters have been on this and seen the tumors disappear, so that's what we're hoping for! Yay!
The Doc pretty much said that what we're doing is like buying time. And with enough time they'll find something to cure this or knock it out completely, or at least turn it into a chronic disease, one I can live with until I die from something else. (I'm paraphrasing.) I can live with that.
In other news, I'm having a blast with a bracelet I'm making right now. Beautiful dichroic cabachons and all sorts of sparkly beads. I sold 5 bracelets last week, which is so heartening. Having fun, relaxing, laughing.
Still Alive!
Sunday, July 25, 2010
Sunday, July 4, 2010
So this is life
What an odd week this has been.
Carmen encounter.
News that is less than great.
Television.
Koster encounter.
So Wednesday night we went to a great little party. Lots of young children and the folks that I share my days with who more and more are becoming so dear to me. (Sigh.)
On the way home we stopped at a Walgreens. Gerry went in, I waited in the car. A car pulled up next to us, and I didn't look, maintaining my 'mean face' to ward off anyone attempting to connect with me.
Gerry comes out and says, Carmen was in there. She's coming out. She wants to see you.
When Ann was in Handmaker, there was this amazing caretaker, Carmen. She took care of this woman, Lillian. She was a whirlwind of compassion and love and fun. She ran the Bingo games, and loved up every single poor person in there who longed to go home. And she wasn't much younger than most of the people in there. After Ann died, we never went back. We watch the obituaries for those women/men we came to know. We helped put bibs on those people, helped them get back to their rooms, talked with them, watched Wheel of Fortune with them. For 6 months, while Ann suffered.
So there suddenly was Carmen. A brace is holding her up. She suffers from a pinched nerve. Still a smoker, still with the hacking cough that you can't believe will ever end well. A fountain of love washing over me as I sat in the Beetle. Why? Why that night, at just that time? How does that happen? Why is she there in front of me right now?
Friday, my visit to the Doc. I delayed it a week so I could pay the lower co-pay of $20 instead of $50. Seems my tumor markers continue to increase, now over 16 which is the cut off point. Hmmmm.
PET scan to come in July, soon. It will tell the tale. If there is progression in my lungs, as I suspect there will be, we will be changing our treatment plan. Probably going on to Tykerb, maybe Xeloda. This makes me so sad and worried. Those drugs can mean incredible fatigue, possible nausea and diarrhea. I spent some time documenting my 'plan' for going on disability, not sure how it would all work, but determined to NOT work through chemo a second time. I have been fighting this for 3.5 years already. My sense is that I have 5 to 10 years more at the most. And that's okay. I just want to make sure that the life I live is full and happy and comfortable...
Sunday morning. The television we have had for the past 20 years or more refuses to resolve its picture. There are lines. We have experienced some reluctance from the TV to make its picture perfect, but today it doesn't come together. We look at the ads. I research LCD vs. Plasma vs. LED televisions, and off we go to Sears. Tonight we are sitting here watching a Samsung 46" TV, have a new DVD player, and will be calling Cox on Tuesday to order up HDTV with a DVR. Helllllooooo 21st Century. We have a deal with Sears with no interest for 24 months, so that makes it workable. As I said to Gerry, the world is going to end in 2012, so why worry about debt?
Koster encounter.
We're waiting for noon, when Sears opens, and sitting outside of Sears in the Park Place Mall. Keith Koster walks by. He is still himself. I haven't run into him since 2001 or 2 after I rallied the troops of Desert Voices and reorganized. I like Keith. I think he's a creative guy. Having lived longer, I have a better perspective on life. There wasn't anything specifically wrong with Keith's leadership, more with the board at the time. It felt awkward to see him, yet so very nice. I wanted to apologize, but didn't get there. Keith, I'm sorry for my arrogance and hubris. I haven't been able to go back since I stopped being the president of the board.
So that's our week. Or my week. How am I feeling? I'm okay. as I keep saying, I'm still alive, still working, still with a sense of humor and an interest in what's going on around me.
The longer I live the less I understand the world.
Mae
Carmen encounter.
News that is less than great.
Television.
Koster encounter.
So Wednesday night we went to a great little party. Lots of young children and the folks that I share my days with who more and more are becoming so dear to me. (Sigh.)
On the way home we stopped at a Walgreens. Gerry went in, I waited in the car. A car pulled up next to us, and I didn't look, maintaining my 'mean face' to ward off anyone attempting to connect with me.
Gerry comes out and says, Carmen was in there. She's coming out. She wants to see you.
When Ann was in Handmaker, there was this amazing caretaker, Carmen. She took care of this woman, Lillian. She was a whirlwind of compassion and love and fun. She ran the Bingo games, and loved up every single poor person in there who longed to go home. And she wasn't much younger than most of the people in there. After Ann died, we never went back. We watch the obituaries for those women/men we came to know. We helped put bibs on those people, helped them get back to their rooms, talked with them, watched Wheel of Fortune with them. For 6 months, while Ann suffered.
So there suddenly was Carmen. A brace is holding her up. She suffers from a pinched nerve. Still a smoker, still with the hacking cough that you can't believe will ever end well. A fountain of love washing over me as I sat in the Beetle. Why? Why that night, at just that time? How does that happen? Why is she there in front of me right now?
Friday, my visit to the Doc. I delayed it a week so I could pay the lower co-pay of $20 instead of $50. Seems my tumor markers continue to increase, now over 16 which is the cut off point. Hmmmm.
PET scan to come in July, soon. It will tell the tale. If there is progression in my lungs, as I suspect there will be, we will be changing our treatment plan. Probably going on to Tykerb, maybe Xeloda. This makes me so sad and worried. Those drugs can mean incredible fatigue, possible nausea and diarrhea. I spent some time documenting my 'plan' for going on disability, not sure how it would all work, but determined to NOT work through chemo a second time. I have been fighting this for 3.5 years already. My sense is that I have 5 to 10 years more at the most. And that's okay. I just want to make sure that the life I live is full and happy and comfortable...
Sunday morning. The television we have had for the past 20 years or more refuses to resolve its picture. There are lines. We have experienced some reluctance from the TV to make its picture perfect, but today it doesn't come together. We look at the ads. I research LCD vs. Plasma vs. LED televisions, and off we go to Sears. Tonight we are sitting here watching a Samsung 46" TV, have a new DVD player, and will be calling Cox on Tuesday to order up HDTV with a DVR. Helllllooooo 21st Century. We have a deal with Sears with no interest for 24 months, so that makes it workable. As I said to Gerry, the world is going to end in 2012, so why worry about debt?
Koster encounter.
We're waiting for noon, when Sears opens, and sitting outside of Sears in the Park Place Mall. Keith Koster walks by. He is still himself. I haven't run into him since 2001 or 2 after I rallied the troops of Desert Voices and reorganized. I like Keith. I think he's a creative guy. Having lived longer, I have a better perspective on life. There wasn't anything specifically wrong with Keith's leadership, more with the board at the time. It felt awkward to see him, yet so very nice. I wanted to apologize, but didn't get there. Keith, I'm sorry for my arrogance and hubris. I haven't been able to go back since I stopped being the president of the board.
So that's our week. Or my week. How am I feeling? I'm okay. as I keep saying, I'm still alive, still working, still with a sense of humor and an interest in what's going on around me.
The longer I live the less I understand the world.
Mae
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