I need to change the title of this Blog to "Life Satisfied".
On March 9, 2012 I stopped working. Some would call it retirement, but it was prompted by my Stage IV ('there-is-no-Stage-V') cancer and I have been approved for Social Security Disability which will begin sometime in late October. Each day has been lovely, and even as we stroll into summer, the overall feeling is a good one. These past 2 weeks I have been focusing on finding and repairing leaks in the yard, both pool and irrigation. Water Dragons rule! Slowly I'm getting the out-of-doors whipped into shape, but there is less and less time that can be spent outside comfortably, so soon we will go into 'working in the garden remission', waiting til October to reappear...and when you can only do about an hour a day, it takes a while. And that's okay. I'm not in a hurry.
The cancer continues to be slow-growing, indolent. I love that word. It sort of sums me up I think. Indolent. Slow. The spots we are watching are small and they are in my left lung. we believe this is cancer, but it is too small to biopsy. However, given my history, both my oncologist and I believe it is cancer. I'm on a little break from the more toxic treatments right now. I was on the last combo, Xeloda and Tykerb, for a year and a half. I quit them in January and by February I began to feel like myself again. I had an appetite, I didn't feel as sick as I did before I stopped. A lot of my depression lifted. And when I quit my job? The anxiety melted away. Took a while. Still get flashbacks from time to time. We do watch my tumor markers with blood draws. they continue to increase steadily, but again, not to extreme levels, and no big changes in anything on the scans.
I should be eligible to move onto medicare I believe in April of 2014. Which is around the time frame when most other Affordable Healthcare Act programs get implemented. In the meantime, I pay $450 a month to maintain my United Healthcare Insurance through COBRA. I could look for something cheaper, one of those plans they set up to cover folks with pre-existing conditions, but in order to qualify, I need to be able to show that for 6 months, I had no insurance coverage at all. How does that really help me? Why should I be made to consider a gamble like that? One car accident away from bankruptcy. Ach.
But I digress. Happy.
So last week I finally was able to tackle looking at the paperwork for AHCCCS, the state's healthcare plan for the less fortunate. What I determined was that I had been approved. I had then been unapproved. But the rules say you get a minimum of 5 months of coverage, so even though I'm not technically approved, I have coverage that I can use. It is, to term it in the least, confusing.
All of this time to think, and all of the hoopla of trying to get my needs taken care of as far as my health is concerned!! I'm beginning to think about letting go of the insurance entirely. But that would mean I couldn't use insurance to check on my status, so I would have to give up knowing what my status is. My choices seem to focus on the cancer or focus on living.
So how would I react to the following:
Chest pains - Treat me
Nausea that increases in frequency and strength and doesn't quit - See what's causing it
Difficulty Breathing - See what's causing it. If cancer, let it be. If pneumonia, treat it.
Anything that would signal brain mets - ignore as long as possible, then hospice
Car accident - Emergency room and treatment, including rehab if I need to re-learn to walk, etc.
Cold or Flu -Primary Care Doc
Hemorrhoids, diarrhea, constipation -Primary Care Doc
Cuts, etc. -Primary Care Doc
As I suspected, I'm not quite ready for off-the-grid existence. I love me some Western Medicine when my leg is broken.
That's plenty for one day. Be Good.
Mae
Thursday, May 24, 2012
Tuesday, December 7, 2010
Elizabeth Edwards Dies
How sad. Elizabeth Edwards died today from metastatic breast cancer. It went to her bones, to her lungs. That's where mine is, so of course I am feeling so odd. She isn't me and I am not her.
I have now lived with the recurrence for four years. We are on top of it, wary, always watching. I don't understand how Elizabeth went from stopping treatment to death in one day. I don't want to be in treatment until the day I die. Cancer may get me, but the treatment is what makes me feel the sickest, at least for now.
I applaud every researcher, every budding scientist studying in University and setting their sights on oncology research.
But really, Mae. We all will die. No one gets out of this world alive, do they? We will all go from different things; cancer is no different from the threat of stroke, heart attack, car accident. I think cancer just gives you an opportunity to consider death over time. And perhaps that is a gift, not a curse.
Sleep peacefully Elizabeth.
I have now lived with the recurrence for four years. We are on top of it, wary, always watching. I don't understand how Elizabeth went from stopping treatment to death in one day. I don't want to be in treatment until the day I die. Cancer may get me, but the treatment is what makes me feel the sickest, at least for now.
I applaud every researcher, every budding scientist studying in University and setting their sights on oncology research.
But really, Mae. We all will die. No one gets out of this world alive, do they? We will all go from different things; cancer is no different from the threat of stroke, heart attack, car accident. I think cancer just gives you an opportunity to consider death over time. And perhaps that is a gift, not a curse.
Sleep peacefully Elizabeth.
Friday, November 12, 2010
Hello Again
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
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
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.
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