Friday, March 06, 2009
Wednesday, January 28, 2009
Ten down, five to go
I visited my oncologist on Monday, and it's all good news.
The CT scan turned out really well - all 7 lymph nodes have shrunk, and are either undetectable, or "normal", which means smaller than 1 cm. An "optimal" response, according to my doc. The chemotherapy is working very well. After a discussion with my doctor, we've decided to tack on an extra three sessions of chemo after the next two, which mean instead of having two more, I have five more, taking me to March 6.
There's a small hope that the extra chemo will knock the cancer out completely (about 10%, if you like statistics), so I'm trading off feeling like shit now for the hope that it goes away, or I go into remission for longer. I'm shooting for the long tail here, people, the end of the bell curve that either manages to get cured, or lives for a reeeaally long time. 20 or more years.
Fact is, I fall into a little bit of a statistical crack - somewhere between a regional recurrence and a metastatic recurrence. Regional would be confined to the axial lymph nodes, or in the area of the first surgery. A true metastatic recurrence would have shown up in another organ. The further I drill down into the statistics, the less they seem to apply to me. So, truth is, there's no way to predict how I'm going to do. Now, they treat me as if it's metastatic disease, just because I've already used up some treatment options - can't do any more radiation to that are, can't do hormone therapy. But I've dug around, and have found very few discussions of a recurrence like mine. So I think I'll just plan on being an exception to the statistics.
Spirits are good, I think Kevin is more worn down than I am. If you are local, take him out for a beer or a hike.
Love to all,
grundy
The CT scan turned out really well - all 7 lymph nodes have shrunk, and are either undetectable, or "normal", which means smaller than 1 cm. An "optimal" response, according to my doc. The chemotherapy is working very well. After a discussion with my doctor, we've decided to tack on an extra three sessions of chemo after the next two, which mean instead of having two more, I have five more, taking me to March 6.
There's a small hope that the extra chemo will knock the cancer out completely (about 10%, if you like statistics), so I'm trading off feeling like shit now for the hope that it goes away, or I go into remission for longer. I'm shooting for the long tail here, people, the end of the bell curve that either manages to get cured, or lives for a reeeaally long time. 20 or more years.
Fact is, I fall into a little bit of a statistical crack - somewhere between a regional recurrence and a metastatic recurrence. Regional would be confined to the axial lymph nodes, or in the area of the first surgery. A true metastatic recurrence would have shown up in another organ. The further I drill down into the statistics, the less they seem to apply to me. So, truth is, there's no way to predict how I'm going to do. Now, they treat me as if it's metastatic disease, just because I've already used up some treatment options - can't do any more radiation to that are, can't do hormone therapy. But I've dug around, and have found very few discussions of a recurrence like mine. So I think I'll just plan on being an exception to the statistics.
Spirits are good, I think Kevin is more worn down than I am. If you are local, take him out for a beer or a hike.
Love to all,
grundy
Thursday, January 15, 2009
Chemo not in vain....
The CT scan showed that all seven of the lymph nodes have decreased in size. This means that the chemotherapy is effective, and is working to beat this cancer.
I am speechless with delight.
Love to all,
Chris
I am speechless with delight.
Love to all,
Chris
Monday, January 12, 2009
I hate Anthem Health Care!
I'm going to moan for a second -
Chemo sucks! I have horrible side effects! I hate my insurance company! Suck suck suck! Hate hate hate!
Pacificare insurance, which I had when I was originally diagnosed, covers cancer treatment. All of it. Fully covered. No co-pay, no nothing. Chemo was covered, surgery was covered. Pacificare, you rock - or at least then you did.
Then I was hired by Caltrans, and switched to Blue Cross Blue Shield. In order to keep my same group docs, I had to get the PPO - the most expensive health care option - large deductible, etc. Paid out the nose for premiums, payed the deductible, payed the max out of pocket - for four years running, so far. But at least I got all the care my docs recommended.
Now a few months ago, Blue Cross became Anthem Blue Cross - and for the first time drugs and procedures recommended by my doctors have been denied. One of them is an anti-nausea drug that was working really well. "The nausea should be controlled by a more cost-efficient alternative." Well, it isn't, you bastards, and if my appeal doesn't overturn that decision, both Kevin and I are going to get mean. Quickly. We'll see how this appeal process works - WATCH THIS SPACE.
I don't think whoever made this decision has any concept of what weekly chemotherapy is like. "Moderate" nausea? No, that's car sickness. Try severe. Or maybe extreme. Well controlled by the drug which I WAS getting, NOT so well controlled by the "more cost-efficient" alternative. What in the hell are you people thinking?
I trust the decision will be overturned. Otherwise I'm going to start a big tantrum. Big. With reporters. And my union. And nasty letters from all of you.
/end rant
Other than that, I'm not sure if I'm really in the home stretch now, or not. I have a CT scan this week, and HOPEFULLY all those lymph nodes are getting smaller - and if they are, I might do an extra round (three more, taking me into march) or two (six more, going to April) of the same chemo, in the hopes of knocking the cancer out more completely. It would be easier to know that I just have the remaining three, but if it's really working seems like it's worth putting up with the additional chemo. (It'll take 3-5 days after the CT to get the results, so I probably won't know the details until a week from Thursday...) I think I can tolerate six more, not sure about nine more. I think the thing I hate about it the most is how it eats my life - three days mostly sick and with no energy to do anything, and then two or three days of being sort of my normal self - but it gets shorter every week. And last week I had a sinus infection, so I was basically out of commission for 10 days. I feel as though I lost a year the first time around. This time I think (I hope) I will recover faster, but still, I don't feel like I've really gotten to live my life since October.
"Moderate" nausea. Ha ha ha.
Chemo sucks! I have horrible side effects! I hate my insurance company! Suck suck suck! Hate hate hate!
Pacificare insurance, which I had when I was originally diagnosed, covers cancer treatment. All of it. Fully covered. No co-pay, no nothing. Chemo was covered, surgery was covered. Pacificare, you rock - or at least then you did.
Then I was hired by Caltrans, and switched to Blue Cross Blue Shield. In order to keep my same group docs, I had to get the PPO - the most expensive health care option - large deductible, etc. Paid out the nose for premiums, payed the deductible, payed the max out of pocket - for four years running, so far. But at least I got all the care my docs recommended.
Now a few months ago, Blue Cross became Anthem Blue Cross - and for the first time drugs and procedures recommended by my doctors have been denied. One of them is an anti-nausea drug that was working really well. "The nausea should be controlled by a more cost-efficient alternative." Well, it isn't, you bastards, and if my appeal doesn't overturn that decision, both Kevin and I are going to get mean. Quickly. We'll see how this appeal process works - WATCH THIS SPACE.
I don't think whoever made this decision has any concept of what weekly chemotherapy is like. "Moderate" nausea? No, that's car sickness. Try severe. Or maybe extreme. Well controlled by the drug which I WAS getting, NOT so well controlled by the "more cost-efficient" alternative. What in the hell are you people thinking?
I trust the decision will be overturned. Otherwise I'm going to start a big tantrum. Big. With reporters. And my union. And nasty letters from all of you.
/end rant
Other than that, I'm not sure if I'm really in the home stretch now, or not. I have a CT scan this week, and HOPEFULLY all those lymph nodes are getting smaller - and if they are, I might do an extra round (three more, taking me into march) or two (six more, going to April) of the same chemo, in the hopes of knocking the cancer out more completely. It would be easier to know that I just have the remaining three, but if it's really working seems like it's worth putting up with the additional chemo. (It'll take 3-5 days after the CT to get the results, so I probably won't know the details until a week from Thursday...) I think I can tolerate six more, not sure about nine more. I think the thing I hate about it the most is how it eats my life - three days mostly sick and with no energy to do anything, and then two or three days of being sort of my normal self - but it gets shorter every week. And last week I had a sinus infection, so I was basically out of commission for 10 days. I feel as though I lost a year the first time around. This time I think (I hope) I will recover faster, but still, I don't feel like I've really gotten to live my life since October.
"Moderate" nausea. Ha ha ha.
Friday, December 26, 2008
New chemo, and happy solstice!
My darling cuz writes me an email every night, and i save it in case I have insomnia, which is one of the more beastly side effect of cancer and chemo. This started out as a reply to her.
Just in case you wonder, I love love LOVE your emails. They are my saving grace sometimes.
Chemo this morning, and after a TON of dithering, Our dear Dr. L changed the main chemo drug from taxol to paclitaxel NAD. Three cheers for Dr. D in SF who put us on to this. In a nutshell, Taxol and that family of drugs - all from Taxis brevifolia, the pacific yew - are delivered by a toxin. Usually a solvent, doesn't that sound yummy? This is what allows it to penetrate the cell wall. The NAD in the new drug is attached to albumin - it's bound to a lipid, instead of a solvent, and THAT is what allows it to penetrate the cell wall. It's the solvent that usually causes the nerve damage, NOT the the chemo drug itself - so with this drug, I should have much less neuropathy. This is reallio trulio cause for celebration. The last three days I was back to doing the Institutional Shuffle- you know how little old ladies walk in nursling homes? That's because either they can't feel their toes, or that their feet hurt so much that they are trying to put as little pressure on them as possible. Mine is a combo - imagine the worst pins and needles you've ever had from your foot falling asleep - only it's all the time - and worse at night, when you are falling asleep.
Needless to say, having my toes and soles of me feet (and me hands) go numb is NOT conducive to a lot of stuff I like to do - knit. Play guitar, walk run jump in and out of boats...and DANCE. I really, really need the tips of my fingers and toes. So the phrase insurance companies pay attention to is QUALITY OF LIFE. I've dropped this one several times, and it seems to be working.
Another benny is that it only takes half an hour, instead of 2-1/2. I got out of chemo after only three hours! Felt like a kid who'd gotten to go home early after a terrible test!
We spent Xmas eve out at Sam and carolines, after hearing Sam sing in the UU choir. It was wonderful - Kevin seems to be joining the local Episcopalian chorus, and I may do the UU choir, so we can take our pick every Sunday. Sam's singing is pretty wonderful, and he's worked really hard at it. Also saw Cliff and Marion, and David, Jane and Lisa, which was jolly. Marion is mostly not there, with her dementia, and it's heartbreaking. She still sings Christmas carols, though.
We of course ate and drank endlessly, and being two weeks out from chemo I ate EVERYTHING. It was heaven. Cornish game hens for dinner, eggs benedict for breakfast, I cooked lots of veggies, Kevin and Tess cooked desserts. What do you suppose this says about our characters? Still mostly can't eat sugar or acid, altho I admit I did indulge in a few stocking chocolates.
Ms. Santa decided that everyone needed cashmere, so she went around buying cheap sweaters and pashminas. Kevin now claims that I really only love him because he is a giant stuffy that I can wrap in cashmere and snuggle up to. He may not be entirely far wrong.
Tess got knocked off every flight between Sunday and Wednesday - No unaccompanied minors into Seattle, over and over and over. I don't think I've ever changed a plane ticket that many times. In addition, her luggage managed to go to Seattle without her. Bob thankfully went and rescued it, since it had ALL her warm winter clothes and all her favorite clothes. Seattle Airport probably still doesn't know where it is....
So we had her here, which was jolly, and Bob flew in late Xmas night. We all sat around by the fire, and of course I went to sleep on the couch at 8 pm, as usual. I should just plan to sleep from 8 pm to 3 am, that seven hours, right?
All my love! Thank you for the best gift of all, nono - your time.
Chris
Just in case you wonder, I love love LOVE your emails. They are my saving grace sometimes.
Chemo this morning, and after a TON of dithering, Our dear Dr. L changed the main chemo drug from taxol to paclitaxel NAD. Three cheers for Dr. D in SF who put us on to this. In a nutshell, Taxol and that family of drugs - all from Taxis brevifolia, the pacific yew - are delivered by a toxin. Usually a solvent, doesn't that sound yummy? This is what allows it to penetrate the cell wall. The NAD in the new drug is attached to albumin - it's bound to a lipid, instead of a solvent, and THAT is what allows it to penetrate the cell wall. It's the solvent that usually causes the nerve damage, NOT the the chemo drug itself - so with this drug, I should have much less neuropathy. This is reallio trulio cause for celebration. The last three days I was back to doing the Institutional Shuffle- you know how little old ladies walk in nursling homes? That's because either they can't feel their toes, or that their feet hurt so much that they are trying to put as little pressure on them as possible. Mine is a combo - imagine the worst pins and needles you've ever had from your foot falling asleep - only it's all the time - and worse at night, when you are falling asleep.
Needless to say, having my toes and soles of me feet (and me hands) go numb is NOT conducive to a lot of stuff I like to do - knit. Play guitar, walk run jump in and out of boats...and DANCE. I really, really need the tips of my fingers and toes. So the phrase insurance companies pay attention to is QUALITY OF LIFE. I've dropped this one several times, and it seems to be working.
Another benny is that it only takes half an hour, instead of 2-1/2. I got out of chemo after only three hours! Felt like a kid who'd gotten to go home early after a terrible test!
We spent Xmas eve out at Sam and carolines, after hearing Sam sing in the UU choir. It was wonderful - Kevin seems to be joining the local Episcopalian chorus, and I may do the UU choir, so we can take our pick every Sunday. Sam's singing is pretty wonderful, and he's worked really hard at it. Also saw Cliff and Marion, and David, Jane and Lisa, which was jolly. Marion is mostly not there, with her dementia, and it's heartbreaking. She still sings Christmas carols, though.
We of course ate and drank endlessly, and being two weeks out from chemo I ate EVERYTHING. It was heaven. Cornish game hens for dinner, eggs benedict for breakfast, I cooked lots of veggies, Kevin and Tess cooked desserts. What do you suppose this says about our characters? Still mostly can't eat sugar or acid, altho I admit I did indulge in a few stocking chocolates.
Ms. Santa decided that everyone needed cashmere, so she went around buying cheap sweaters and pashminas. Kevin now claims that I really only love him because he is a giant stuffy that I can wrap in cashmere and snuggle up to. He may not be entirely far wrong.
Tess got knocked off every flight between Sunday and Wednesday - No unaccompanied minors into Seattle, over and over and over. I don't think I've ever changed a plane ticket that many times. In addition, her luggage managed to go to Seattle without her. Bob thankfully went and rescued it, since it had ALL her warm winter clothes and all her favorite clothes. Seattle Airport probably still doesn't know where it is....
So we had her here, which was jolly, and Bob flew in late Xmas night. We all sat around by the fire, and of course I went to sleep on the couch at 8 pm, as usual. I should just plan to sleep from 8 pm to 3 am, that seven hours, right?
All my love! Thank you for the best gift of all, nono - your time.
Chris
Wednesday, December 17, 2008
This is an interview about chemo and food with me and my darling Tracy, of TracyFood.
The rest is at -
http://www.tracyfood.com/2008/12/16/cancerfood-basics/
While I don’t know a lot about nutrition, I probably know even less about cancer and chemotherapy. However, one of the greatest things I keep learning as I get older is that I don’t need to know everything — I just need to know how to ask people who know stuff I don’t. So, enter the guest post!
My friend Christine does know a thing or two about cancer and chemo both, so after reading Eddie’s message, I wrote some email, asked a bunch of questions, and got more answer than I can fit in one TracyFood entry. Over the next few weeks, I’ll be posting her wisdom in a few installments, and thinking of more questions to ask, in case it turns out we’re serious about writing a book like we keep talking about over instant messages. Here we go…
The rest is at -
http://www.tracyfood.com/2008/12/16/cancerfood-basics/
Friday, December 12, 2008
Short post for Koren
Dear cuz,
We've received the amazing quilts, and both Tess and Kevin immediately wrapped them around their shoulders - how's that for a virtual hug? Thank you, thank you, thank you! I will try to post piccies sometime soon. Need to figure out how to integrate images and art into this blogthing, anyhow.
I'm actually doing really well. Other than chemo, I'm fine. This time so far has been much easier - we have a lot fewer OTHER stressors on our plates, for one thing. The biggest complication is that Tess is now an early adolescent, so we have the sulks and pouty faces thrown in with the emotional reaction to the cancer. I know she needs to get her feelings out, but does it have to be SULK?
The chemo is so far hitting me much less - i have more brains, and more appetite. I've lost a little bit of weight, but most of the week seem to be functioning normally. My continuity is sometimes a bit lacking - i get to work, and go, now what in HELL was I working on yesterday? But perhaps that's just middle age...
Our visit to UCSF for a second opinion was encouraging, and he talked with a fairly long term view. If taxol works, I can continue to use it for a long time, perhaps years. With all the treatments now, a cancer like mine is really looked at as a chronic disease, like diabetes, rather than a death sentence. We talked about a number of other chemo drugs, and stuff is being developed so fast now that there will be new treatments all the time. So try not to worry too much.
In other news, I've been doing this extremely foofoo touchy feely art thing with a group of women called Soul Collage (I kid you not) but having a blast doing it. It's pretty structured - the board are a certain size, and they have this elaborate structure around what the different cards are supposed to symbolize. I don't seem to use them that way at all, I just love MAKING them. And it's straight out of kindergarten - cut pictures you like out of magazines or old calendars, and stick 'em down with rubber cement. The structure eliminates a lot of decisions, so for me it's just pure PLAY - like cutting out paper dolls. I'll try to send you images of a few of mine, and there are quite a lot by others out on the internet if you are interested. Just don't ask me what archetype my card is supposed to symbolize.
I've picked up a couple of weird books about artists and creative process, and I'm itching to mess with collage on a larger scale - it's taken me for damned ever to realize how many unspoken rules I learned about making art, and that I'm allowed to break them. i.e. - collage isn't "serious" art, nor is mixed media. (Can you hear my mother's voice? As you know, lover her to bits, but she did have strong opinions about things...) But I love messing around and mixing things together - text and computer stuff and photographs and paper and everything. I recently saw a show of someone I know peripherally (the husband of the woman who teaches the Soul Collage class), and it was all computer printed photos that he then manipulated, like folding or cutting them and weaving the torn pieces together. and I LOVED it. She is doing a class this spring, and I'm going...just to have a couple of hours set aside for art making.
I'm also in the process of turning our living room into an art studio. A whole table and shelves just for projects, and I don't have to clean it off the dining room table in time for dinner. It frees me up to work at a bigger scale, and be much messier.
Love to all of you!
Chris
We've received the amazing quilts, and both Tess and Kevin immediately wrapped them around their shoulders - how's that for a virtual hug? Thank you, thank you, thank you! I will try to post piccies sometime soon. Need to figure out how to integrate images and art into this blogthing, anyhow.
I'm actually doing really well. Other than chemo, I'm fine. This time so far has been much easier - we have a lot fewer OTHER stressors on our plates, for one thing. The biggest complication is that Tess is now an early adolescent, so we have the sulks and pouty faces thrown in with the emotional reaction to the cancer. I know she needs to get her feelings out, but does it have to be SULK?
The chemo is so far hitting me much less - i have more brains, and more appetite. I've lost a little bit of weight, but most of the week seem to be functioning normally. My continuity is sometimes a bit lacking - i get to work, and go, now what in HELL was I working on yesterday? But perhaps that's just middle age...
Our visit to UCSF for a second opinion was encouraging, and he talked with a fairly long term view. If taxol works, I can continue to use it for a long time, perhaps years. With all the treatments now, a cancer like mine is really looked at as a chronic disease, like diabetes, rather than a death sentence. We talked about a number of other chemo drugs, and stuff is being developed so fast now that there will be new treatments all the time. So try not to worry too much.
In other news, I've been doing this extremely foofoo touchy feely art thing with a group of women called Soul Collage (I kid you not) but having a blast doing it. It's pretty structured - the board are a certain size, and they have this elaborate structure around what the different cards are supposed to symbolize. I don't seem to use them that way at all, I just love MAKING them. And it's straight out of kindergarten - cut pictures you like out of magazines or old calendars, and stick 'em down with rubber cement. The structure eliminates a lot of decisions, so for me it's just pure PLAY - like cutting out paper dolls. I'll try to send you images of a few of mine, and there are quite a lot by others out on the internet if you are interested. Just don't ask me what archetype my card is supposed to symbolize.
I've picked up a couple of weird books about artists and creative process, and I'm itching to mess with collage on a larger scale - it's taken me for damned ever to realize how many unspoken rules I learned about making art, and that I'm allowed to break them. i.e. - collage isn't "serious" art, nor is mixed media. (Can you hear my mother's voice? As you know, lover her to bits, but she did have strong opinions about things...) But I love messing around and mixing things together - text and computer stuff and photographs and paper and everything. I recently saw a show of someone I know peripherally (the husband of the woman who teaches the Soul Collage class), and it was all computer printed photos that he then manipulated, like folding or cutting them and weaving the torn pieces together. and I LOVED it. She is doing a class this spring, and I'm going...just to have a couple of hours set aside for art making.
I'm also in the process of turning our living room into an art studio. A whole table and shelves just for projects, and I don't have to clean it off the dining room table in time for dinner. It frees me up to work at a bigger scale, and be much messier.
Love to all of you!
Chris
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