Haven't posted in a long time. Getting used to the new drugs. I'm on Tykerb every day, 5 in the morning on an empty stomach. Then Xeloda twice a day, 3 each time, with food, and one week on, one week off. It messes with my appetite, but I have some pills for nausea, so not too bad. Feel tired a lot, but still working.
But my PET scans showed a lot of improvement. Less activity in the tumors and they are shrinking. So that's great!
Not sure how long this will go on. Doesn't look like it is something I can quit, ,unless it stops working.
Tired, heading for bed.
Thanks for reading.
Mae
Friday, November 12, 2010
Sunday, July 25, 2010
Whooo-whooooo!
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!
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 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
Tuesday, June 1, 2010
Saturday, April 24, 2010
A New Course of Treatment
Met with the Doc on the 14th to discuss the results of the PET and MRI's. My hips and back are fine as far as cancer goes. It's there, but not active. They're seeing some bursitis in my hips. How funny. I know the first time I heard of bursitis I was probably CERTAIN that it would never happen to me. And yet, here I am.
We're seeing more (slow) progression in my left lung, as well as something new in a lymph node area behind my chest wall. I have to emphasize that this is small and slow. We are NOT talking big panic here! (Small panic is okay however.)
We decided that I would stay on the Herceptin (the infusion every 4 weeks with virtually no side effects), stay on Aromasin (a tiny pill once daily), and add Tykerb. Tykerb is taken daily in pill form. It is considered a chemo, but targets the cancer. Which, in terms of how this affects me, (which of course is the most important part...) means that I don't lose hair. There are some nastier side effects but they occur in only about 30% of people who take Tykerb, so we're thinking positive. And, if it should happen that I'm in the 30%, they have lots of other drugs to handle those side effects. So, no big deal.
It's funny how easy it is to focus on the possible side effects rather than if it will work or not. And that is funny - 'odd', not funny - 'ha ha'.
So of course there is prolonged drama just getting signed up for the meds, but the wheels are turning. I'll keep you informed as to how it goes.
And in the meantime, check out my page on Etsy. www.etsy.com/mysistersbaubles. Make me happy.
We're seeing more (slow) progression in my left lung, as well as something new in a lymph node area behind my chest wall. I have to emphasize that this is small and slow. We are NOT talking big panic here! (Small panic is okay however.)
We decided that I would stay on the Herceptin (the infusion every 4 weeks with virtually no side effects), stay on Aromasin (a tiny pill once daily), and add Tykerb. Tykerb is taken daily in pill form. It is considered a chemo, but targets the cancer. Which, in terms of how this affects me, (which of course is the most important part...) means that I don't lose hair. There are some nastier side effects but they occur in only about 30% of people who take Tykerb, so we're thinking positive. And, if it should happen that I'm in the 30%, they have lots of other drugs to handle those side effects. So, no big deal.
It's funny how easy it is to focus on the possible side effects rather than if it will work or not. And that is funny - 'odd', not funny - 'ha ha'.
So of course there is prolonged drama just getting signed up for the meds, but the wheels are turning. I'll keep you informed as to how it goes.
And in the meantime, check out my page on Etsy. www.etsy.com/mysistersbaubles. Make me happy.
Tuesday, April 6, 2010
A piece of advice
Don't ever sign up for a PET scan and 2 MRI's in one day. It's exhausting.
Last PET was October 09. So I had just a CT scan of the lungs in January, it showed a new tumor, and so here we are in April, having another PET.
But my hip (left) and lower back have been pretty painful for the past 6 months or so. Thus the MRI.
I'll probably hear on Wednesday or Thursday as to the results.
Just sayin'.
Mae
Last PET was October 09. So I had just a CT scan of the lungs in January, it showed a new tumor, and so here we are in April, having another PET.
But my hip (left) and lower back have been pretty painful for the past 6 months or so. Thus the MRI.
I'll probably hear on Wednesday or Thursday as to the results.
Just sayin'.
Mae
Friday, February 26, 2010
Happy Birthday to Me!
I'm 58 today! Yay! What a nice day I had. Gerry sang to me when I woke up, I got myself a half-caf vanilla latte at Coffeetimes, Clyde brought me a chocolate cake that said 'Happy Birthday Mae' on it, and all my friends at ATC gathered in the conference room to sing to me and give me the 'traveling birthday decorations'. I got a huge card that everyone signed, and a marvelous 'Happy Birthday' sign that's connected together with colorful yarn, and a Monkey that spins and sings the Beatles Birthday song. Went to lunch with one of my favorite new people, Shirley Chann, and Clyde and had a marvelous fish fry at Pastiche. Finished sending in all the files for the conversion at work and left the office at 4:30. Smelling baked potato now, anticipating steak Gerry's way with roasted asparagus.
Life is very, very good.
Life is very, very good.
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