I'm on a high now for numerous reasons. First, the ondansetron high continues. Sometimes I almost worry about going manic, so if you see me buying 50 baguettes like the Tom Wilkinson character in "Michael Clayton", please point out that not even Finley could eat fifty of them. Plus it's another incredibly beautiful day. And my student is going to the University of Copenhagen, on a fabulous three-year postdoc. Denmark has a strong topology tradition and it really is a great opportunity. I really haven't had many successful Ph.D. students, not at this level, so it's a huge boost for me. I have a ton of fun stuff going on this weekend, starting with the last two episodes of West Wing tonight (kinda bittersweet really), Cirque du Soleil tomorrow, and of course a little football game on Sunday. And on Monday, my first Italian lesson since December!
But, getting back to the actual purpose of this blog, the breaking news is that I am now Picc-less! At today's appointment at the urology clinic, Jina, Teri the Picc nurse and Susan all looked at my arm and responded with a facial expression equivalent to "Yuck!". I seem to have either cellulitis, contact dermatitis, or both, and although there is some risk as I said earlier with doing the last two infusions by ordinary intravenous, the risk of my current infection becoming systemic is greater and all agreed we should take it out. They got no argument from me, I can assure you. It's an incredible relief to be rid of the damn thing. Now I have to take antibiotics but they think it should improve within 24-36 hours. I can even take a shower without the dumb plastic sleeve, woo hoo! The only freaky thing is that despite my supposed allergy to penicillin, they're prescribing some second generation penicillin derivative which they don't think I will react to, but "if you have trouble breathing go to the ER". Oh, great. But certainly not during the superbowl!
By the way, no one has answered my trivia question so I will: "Weasels ripped my flesh" was a c. 1970 album of Frank Zappa and the Mothers of Invention. The album cover showed a man shaving with an electric razor whose head was the head of a weasel that was ripping big chunks of flesh out of his cheek. Only Zappa could come up with that.
Also for those who have been reading it, the third and critical installment of "What's behind the sky" should appear within the next few days, so watch this space!
Friday, January 30, 2015
Monday, January 26, 2015
An amazing day!
I don't usually post on consecutive days, but today has been pretty amazing. I think I may be experiencing another ondansetron high for the first time in a while; I'll take it!
Actually I have to start with yesterday evening. Wendy's enchiladas were the best ever and I ate two of them, plus more of the Italian cake. It's been quite a while since I've had that much of an appetite, which is great in itself. Plus Kaia was at her absolute cutest, all enthusiastic about helping Wendy in the kitchen and serving us all. She would put the sour cream on the table saying "This is sour cream to put on your enchiladas", then the same with the avocados and finally the plate of enchiladas "this is for grandpa" etc. As they were leaving grandpa pulled the old garbage trick to help out the parents; they still find it quite a treat to help me take the garbage down the stairs. Every time Finley insists on carrying the "green bag" (compost), and every time he seems quite disturbed that the green bag doesn't go in the green can. Sorry Finley, it goes in the gray one!
Today it's been another beautiful, bizarrely warm day. Don't mean to rub it in for those of you who either (a) live in Boston or (b) are trying to get to New York (hi Abby!) but I've been walking around outside in just a t-shirt. Well, pants too. My class went especially well. I was a bit bugged because I had to go down to the med center again. The Picc problem is pretty bad; my arm looks like
weasels ripped my flesh. (Trivia quiz: the weasel reference is to an album c. 1970. Can you name the group? Can you describe the album cover? No internet cheating!) But the walk through campus was so beautiful, who cares? And it's always fun to see Sarah, who before even looking at my arm gushed enthusiastically about Seattle Opera's next season, wondering what operas she should go to. Well, Marriage of Figaro is obviously a must-see. I asked if she'd seen the Shawshank Redemption, pointing out that the beautiful duet what's-his-name plays over the prison loudspeakers is from Figaro. She had, a really lit up at that. Plus the Pearl Fishers is also mandatory, with its famous beautiful male duet among other things. I think I've got her convinced that I'm a real opera expert.
We're trying a new approach that I hope will work. But the main thing is that paradoxically I feel fantastic today. My mathematical brain is humming along at a brisk pace (local cohomology, where have you been all my life? How could I not be aware of the connections to group cohomology? Fabulous stuff, that I'm working on with James my second student.) Walking back to the math dept I found myself spontaneously singing a different James, Mr. Brown, even though I've never been a Motown fan: "I feeeeeeeeeeeeeeeel good!! I knew that I would now..."
So I have renewed hope: one more nasty weekend of cisplatin, and I should be home free.
Meanwhile tonight, more enchiladas and a West Wing evening! Only five episodes left and we'll have finished all seven seasons. It'll be kind of sad, ending it.
Ciao a tutti, i belli e i brutti! (a standard and amusing Italian expression "hello/goodbye to all, the beautiful and the ugly" that rhymes in Italian)
Actually I have to start with yesterday evening. Wendy's enchiladas were the best ever and I ate two of them, plus more of the Italian cake. It's been quite a while since I've had that much of an appetite, which is great in itself. Plus Kaia was at her absolute cutest, all enthusiastic about helping Wendy in the kitchen and serving us all. She would put the sour cream on the table saying "This is sour cream to put on your enchiladas", then the same with the avocados and finally the plate of enchiladas "this is for grandpa" etc. As they were leaving grandpa pulled the old garbage trick to help out the parents; they still find it quite a treat to help me take the garbage down the stairs. Every time Finley insists on carrying the "green bag" (compost), and every time he seems quite disturbed that the green bag doesn't go in the green can. Sorry Finley, it goes in the gray one!
Today it's been another beautiful, bizarrely warm day. Don't mean to rub it in for those of you who either (a) live in Boston or (b) are trying to get to New York (hi Abby!) but I've been walking around outside in just a t-shirt. Well, pants too. My class went especially well. I was a bit bugged because I had to go down to the med center again. The Picc problem is pretty bad; my arm looks like
weasels ripped my flesh. (Trivia quiz: the weasel reference is to an album c. 1970. Can you name the group? Can you describe the album cover? No internet cheating!) But the walk through campus was so beautiful, who cares? And it's always fun to see Sarah, who before even looking at my arm gushed enthusiastically about Seattle Opera's next season, wondering what operas she should go to. Well, Marriage of Figaro is obviously a must-see. I asked if she'd seen the Shawshank Redemption, pointing out that the beautiful duet what's-his-name plays over the prison loudspeakers is from Figaro. She had, a really lit up at that. Plus the Pearl Fishers is also mandatory, with its famous beautiful male duet among other things. I think I've got her convinced that I'm a real opera expert.
We're trying a new approach that I hope will work. But the main thing is that paradoxically I feel fantastic today. My mathematical brain is humming along at a brisk pace (local cohomology, where have you been all my life? How could I not be aware of the connections to group cohomology? Fabulous stuff, that I'm working on with James my second student.) Walking back to the math dept I found myself spontaneously singing a different James, Mr. Brown, even though I've never been a Motown fan: "I feeeeeeeeeeeeeeeel good!! I knew that I would now..."
So I have renewed hope: one more nasty weekend of cisplatin, and I should be home free.
Meanwhile tonight, more enchiladas and a West Wing evening! Only five episodes left and we'll have finished all seven seasons. It'll be kind of sad, ending it.
Ciao a tutti, i belli e i brutti! (a standard and amusing Italian expression "hello/goodbye to all, the beautiful and the ugly" that rhymes in Italian)
Sunday, January 25, 2015
One cycle to go
It's a beautiful and unseasonably warm day today. Can't say I feel great after Friday's infusion, but compared to last weekend it's a vacation.
On Friday I was momentarily excited when it was mentioned that the PICC could come out that day, but Susan (the other nurse practitioner) cautioned against it. Even the two infusions I have left to go could damage veins and risk infection if delivered by normal intravenous means. So I guess I'll gut it out until Feb. 13. The problem is that the skin around the PICC has become extremely irritated with horrible itching. As usual a legion of PICC-nurses came by to look at me (typical reactions: "that's weird...I've never seen that before"...etc) and we're trying the umpteenth experiment to fix the problem. I seem to be a real outlier in the PICC-world.
Also, the lab work revealed a very low neutrophil count (i.e. compromised immune system), below the level at which they will normally proceed with infusion. After consultation with the oncologist however I was, as I expected, granted a topologist's exception and we proceeded anyway. In earlier cycles at Day 8 (the second infusion of the cycle) I got stomach injections of "nulasta", a whitecell booster that worked extremely well. Then it turned out the insurance company wouldn't cover it, despite repeated appeals by the oncologist, so now we're winging it with prophylactic antibiotics. I'm supposed to be extra careful about exposure to sick people, but that's pretty hard to do. I did promise them that I wouldn't handle any rabid bats for a while.
To be honest I'm pretty damn tired of the chemo. Taking a cue from Gone with the Wind I told Sarah and Dana (one of the infusion nurses; great sense of humor) "As God is my witness, I will never do chemo again". Sarah's reaction was "never say never", but the way I feel now I really would not. Either find another treatment, or die trying, is my current position. Well, sorry to be overdramatic but when the final cycle is over and the next CT-scan results are in, I really have no idea what happens next. The optimistic view is that I'll be "cured", with the fallback position being, I hope, the new immunotherapy if it gets FDA approved.
Anyway that's neither here nor there and largely irrelevant for life in the moment. Mainly I'm just looking forward (understatement of the century) to being off chemo, PICC-less, and heading out on hikes. Get out on the bike as soon as my strength is back, or maybe before, as who needs strength for my version of biking (Sammamish river trail, flat as a pancake).
Meanwhile life is great, if I ignore the chemo! In my class we're studying a beautiful subject known as Galois theory, after early 19th century French mathematician Evariste Galois. He was a visionary far ahead of his time who developed his theory at age 19 and was killed a year later in a duel. My senior Ph.D student has a post-doc offer from UBC, one of his top choices, and is short-listed at a mathematical institute in Copenhagen that would really be cool. It's a big psychological boost not only for him but also for me. My junior Ph.D student is doing extremely well and may turn out to be even better. So, although I'm pretty much a has-been as far as my own research, I seem to be having renewed success with Ph.D students.
And of course, Kaia and Finley always cheer me up! Recently Kaia and I had a long conversation about dinosaurs, a subject on which I was more expert at age 9 than I am today. Among other things she wondered whether you would be squished if a Brontosaurus stepped on you, a question I was able to answer authoritatively. She also was quite proud to show us her new desk in her bedroom (she's growing up!!) and all the art projects she's been working on. Finley meanwhile continues to amaze me with his concentration span for building projects (railroads, legos etc). Needless to say he can also be a little rascal at times, as when he insisted that he wanted an entire half a loaf of bread for himself.
"But Finley, you'll turn into a loaf of bread," I cautioned. To which he replied very seriously "No I would not."
Ongoing support from family and friends has been wonderful and means a lot to me. Wendy has been making me all kinds of yummy things: a delicious new potato-soup recipe, superhealthy smoothies, and COCONUT OATMEAL COOKIES. Yum!
I was very touched by moral support from an unexpected source, namely my Italian teachers Elisabetta and Roberta, co-founders of the school Percorso Italiano where I've been taking lessons since 2010. I had told Elisabetta about my cancer because she has a lot of experience with relatives and inlaws who have had it (her mother died of it). I haven't had any lessons for a while, and told Elisabetta I better wait until Feb. 2 during an "off" week. To my surprise she and Roberta wrote back together offering to come out to our house Saturday (yesterday) for an Italian chat, and that they would bring dolci (sweets). Although very much appreciating such a kind offer, I said it wasn't a good idea as there was no telling what condition I'd be in on Saturday. And that was that, or so I thought until Saturday afternoon while working in my office an email came in saying (in Italian, of course) telling me to "look outside our front door" when I had a chance. It turns out that the two of them somehow came up the steps to the front door without either Wendy or I noticing and left a package of pasta, homemade pasta sauce, a homemade cake, a book and a note saying to get well soon because "Percorso Italiano isn't the same without you". I was totally floored by this, still haven't gotten over it. The pasta and the cake are delicious!
It really is a Beautiful World. The wonderful Brown family is coming over for enchiladas this evening and I had best sign off to rest up for the Nutty Nut Show. To be followed by Downton Abbey of course.
So glad I avoided duels in my youth!
On Friday I was momentarily excited when it was mentioned that the PICC could come out that day, but Susan (the other nurse practitioner) cautioned against it. Even the two infusions I have left to go could damage veins and risk infection if delivered by normal intravenous means. So I guess I'll gut it out until Feb. 13. The problem is that the skin around the PICC has become extremely irritated with horrible itching. As usual a legion of PICC-nurses came by to look at me (typical reactions: "that's weird...I've never seen that before"...etc) and we're trying the umpteenth experiment to fix the problem. I seem to be a real outlier in the PICC-world.
Also, the lab work revealed a very low neutrophil count (i.e. compromised immune system), below the level at which they will normally proceed with infusion. After consultation with the oncologist however I was, as I expected, granted a topologist's exception and we proceeded anyway. In earlier cycles at Day 8 (the second infusion of the cycle) I got stomach injections of "nulasta", a whitecell booster that worked extremely well. Then it turned out the insurance company wouldn't cover it, despite repeated appeals by the oncologist, so now we're winging it with prophylactic antibiotics. I'm supposed to be extra careful about exposure to sick people, but that's pretty hard to do. I did promise them that I wouldn't handle any rabid bats for a while.
To be honest I'm pretty damn tired of the chemo. Taking a cue from Gone with the Wind I told Sarah and Dana (one of the infusion nurses; great sense of humor) "As God is my witness, I will never do chemo again". Sarah's reaction was "never say never", but the way I feel now I really would not. Either find another treatment, or die trying, is my current position. Well, sorry to be overdramatic but when the final cycle is over and the next CT-scan results are in, I really have no idea what happens next. The optimistic view is that I'll be "cured", with the fallback position being, I hope, the new immunotherapy if it gets FDA approved.
Anyway that's neither here nor there and largely irrelevant for life in the moment. Mainly I'm just looking forward (understatement of the century) to being off chemo, PICC-less, and heading out on hikes. Get out on the bike as soon as my strength is back, or maybe before, as who needs strength for my version of biking (Sammamish river trail, flat as a pancake).
Meanwhile life is great, if I ignore the chemo! In my class we're studying a beautiful subject known as Galois theory, after early 19th century French mathematician Evariste Galois. He was a visionary far ahead of his time who developed his theory at age 19 and was killed a year later in a duel. My senior Ph.D student has a post-doc offer from UBC, one of his top choices, and is short-listed at a mathematical institute in Copenhagen that would really be cool. It's a big psychological boost not only for him but also for me. My junior Ph.D student is doing extremely well and may turn out to be even better. So, although I'm pretty much a has-been as far as my own research, I seem to be having renewed success with Ph.D students.
And of course, Kaia and Finley always cheer me up! Recently Kaia and I had a long conversation about dinosaurs, a subject on which I was more expert at age 9 than I am today. Among other things she wondered whether you would be squished if a Brontosaurus stepped on you, a question I was able to answer authoritatively. She also was quite proud to show us her new desk in her bedroom (she's growing up!!) and all the art projects she's been working on. Finley meanwhile continues to amaze me with his concentration span for building projects (railroads, legos etc). Needless to say he can also be a little rascal at times, as when he insisted that he wanted an entire half a loaf of bread for himself.
"But Finley, you'll turn into a loaf of bread," I cautioned. To which he replied very seriously "No I would not."
Ongoing support from family and friends has been wonderful and means a lot to me. Wendy has been making me all kinds of yummy things: a delicious new potato-soup recipe, superhealthy smoothies, and COCONUT OATMEAL COOKIES. Yum!
I was very touched by moral support from an unexpected source, namely my Italian teachers Elisabetta and Roberta, co-founders of the school Percorso Italiano where I've been taking lessons since 2010. I had told Elisabetta about my cancer because she has a lot of experience with relatives and inlaws who have had it (her mother died of it). I haven't had any lessons for a while, and told Elisabetta I better wait until Feb. 2 during an "off" week. To my surprise she and Roberta wrote back together offering to come out to our house Saturday (yesterday) for an Italian chat, and that they would bring dolci (sweets). Although very much appreciating such a kind offer, I said it wasn't a good idea as there was no telling what condition I'd be in on Saturday. And that was that, or so I thought until Saturday afternoon while working in my office an email came in saying (in Italian, of course) telling me to "look outside our front door" when I had a chance. It turns out that the two of them somehow came up the steps to the front door without either Wendy or I noticing and left a package of pasta, homemade pasta sauce, a homemade cake, a book and a note saying to get well soon because "Percorso Italiano isn't the same without you". I was totally floored by this, still haven't gotten over it. The pasta and the cake are delicious!
It really is a Beautiful World. The wonderful Brown family is coming over for enchiladas this evening and I had best sign off to rest up for the Nutty Nut Show. To be followed by Downton Abbey of course.
So glad I avoided duels in my youth!
Saturday, January 17, 2015
One down, three to go
Having the flu and then chemo has little to recommend it, so if I were you I'd avoid it. However, I was very relieved to get the green light yesterday to proceed, as I'm anxious to just be done with it.
My current audiobook is Victor Hugo's Les miserables (or in my version, I miserabili), and I must say I feel a certain solidarity with the title characters.
I was the only one in the infusion ward after about 5, hanging out in the luxury suite imbibing the Nectar of the Gods. Talked with one of the nurses about the recent free climb of the Dawn Wall in Yosemite that's been in the news a lot. Actually Jay and I did it first in 1972, without ropes, at night with no headlamps. That 8 foot "dyno" leap (you can see it online) was a little spooky in the dark.
By the way Sarah and Jina absolutely loved Tosca! So we've definitely got a couple of new opera fans.
This weekend I'll just be distracting myself from the chemo-crud with my usual shenanigans. Well, the Seahawks, for one thing! Not to mention the Patriots, in honor of Jan and Jerry (although I have a certain fondness for Indy, and Andrew Luck is fun to watch). Plus a Ph.D. student and I are looking around at Castelnuovo-Mumford regularity for equivariant cohomology rings for a thesis problem. It's cool stuff; let me know if you have any ideas! Plus Italian, of course. I have a new correspondent, Sabina, a 45-year old who teaches Italian in Austria and found my Italian website. She is talkative to put it mildly; to the question "how did you end up in Austria?" she answered with her complete life story including an unhappy childhood with a difficult overbearing father and depressed mother, working in Austria as an "au pair" for a rich, arrogant couple who were mean to her and called her "the Italian" rather than by name, and finally discovering true love (an Austrian), marriage, two children of her own. She sent me her own translation into Italian (from Venetian dialect) of "La locanderia", a famous 18th century play by Gordoni. It's been fun reading it; reminds of me of various comic operas by Mozart, Rossini etc. and indeed I believe was made into an opera but not by anyone famous. Anyway the more distractions the better from this "miserabile" chemo.
The day after Christmas we went to the funeral of Wendy's cousin Scott. Some of you might remember him from Warren and Shirley's wedding; his two brothers carried him in his wheelchair up the stairs. He was diagnosed with MS in his twenties, and died of it at 50. Compared to that, getting cancer at 63 is a walk in the park.
My current audiobook is Victor Hugo's Les miserables (or in my version, I miserabili), and I must say I feel a certain solidarity with the title characters.
I was the only one in the infusion ward after about 5, hanging out in the luxury suite imbibing the Nectar of the Gods. Talked with one of the nurses about the recent free climb of the Dawn Wall in Yosemite that's been in the news a lot. Actually Jay and I did it first in 1972, without ropes, at night with no headlamps. That 8 foot "dyno" leap (you can see it online) was a little spooky in the dark.
By the way Sarah and Jina absolutely loved Tosca! So we've definitely got a couple of new opera fans.
This weekend I'll just be distracting myself from the chemo-crud with my usual shenanigans. Well, the Seahawks, for one thing! Not to mention the Patriots, in honor of Jan and Jerry (although I have a certain fondness for Indy, and Andrew Luck is fun to watch). Plus a Ph.D. student and I are looking around at Castelnuovo-Mumford regularity for equivariant cohomology rings for a thesis problem. It's cool stuff; let me know if you have any ideas! Plus Italian, of course. I have a new correspondent, Sabina, a 45-year old who teaches Italian in Austria and found my Italian website. She is talkative to put it mildly; to the question "how did you end up in Austria?" she answered with her complete life story including an unhappy childhood with a difficult overbearing father and depressed mother, working in Austria as an "au pair" for a rich, arrogant couple who were mean to her and called her "the Italian" rather than by name, and finally discovering true love (an Austrian), marriage, two children of her own. She sent me her own translation into Italian (from Venetian dialect) of "La locanderia", a famous 18th century play by Gordoni. It's been fun reading it; reminds of me of various comic operas by Mozart, Rossini etc. and indeed I believe was made into an opera but not by anyone famous. Anyway the more distractions the better from this "miserabile" chemo.
The day after Christmas we went to the funeral of Wendy's cousin Scott. Some of you might remember him from Warren and Shirley's wedding; his two brothers carried him in his wheelchair up the stairs. He was diagnosed with MS in his twenties, and died of it at 50. Compared to that, getting cancer at 63 is a walk in the park.
Friday, January 9, 2015
Nothing to report
Alas, I'm sick today and we had to postpone the chemo 'till next Friday. Annoying since I'd like to get it over with, but it doesn't make sense to take a cisplatin hit when feeling this bad (some weird flu-like symptoms).
I felt great though on our DC trip; Abby's recital was awesome! Jessie came with us, Jan and Jerry and Genny met us there, and Abby and Oliver came back on the same plane with us for a Seattle visit. A very fun, if short, vacation.
I felt great though on our DC trip; Abby's recital was awesome! Jessie came with us, Jan and Jerry and Genny met us there, and Abby and Oliver came back on the same plane with us for a Seattle visit. A very fun, if short, vacation.
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