Last week I found out that there were going to be a whole bunch of hard sudoku puzzles released today for the purpose of people trying out for the U.S. sudoku team. Actually they were released yesterday which means that I didn't get to try out for the team (which is OK because I don't want to go to Croatia Oct. 1-4 as I have recovery from consolidation to do--not that I would have made it anyway, but a gal can pretend). But...the puzzles are still available. If you want to download the puzzles, you have to make yourself a login. I don't know if you will get a bunch of mail from the puzzle association or not. I haven't gotten any yet, but I registered just today.
Ahem, not that I'd notice for sure, because once I got my hot little hands on those puzzles, I stopped long enough to do about the minimum possible. I had a really nice visit with Eva, made dinner for Ellie and hung out a bit with her and Terry and ate my own dinner (delicious falafel from Eva--thank you!). Not much else. I am not sure I checked my email, went to the bathroom, took the dog out, etc. Sudoku is a tremendously guilty pleasure for me because I could easily become one of those people who sits in front of their computer for 23 out of 24 hours a day and I recognize that as a bad outcome. It is incredible to me how I am really quite disciplined in general, but have no ability to withstand the charm of those little empty boxes.
Back when I was working, I used to try to limit myself to one puzzle a day, but honestly I just couldn't do it. I really had to stop altogether or I'd find myself up at 0300 doing "just one more puzzle." I'm sure I could have stopped any time I wanted. Actually, I'm not sure that I could have and it really just worked out best if I didn't do any. Now that I have more time during the day, I have been limiting myself to the three in the NYT and have actually been thinking that they are pretty easy and not that much fun to do. Then, this huge collection of first rate puzzles comes along. Fortunately, it is very limited so I will waste two or three or four days on it and then emerge bleary eyed with sore hands and poor personal hygiene and then return to the world of the respectable. This is incredibly pathetic, but absolutely true. I hope you do not think too much worse of me for it.
I also did the tiniest bit of weaving today and decided not to walk the dog because the last two times I walked her she ended up limping later in the day (ok, it is also self-serving because sudoku). We'll try again tomorrow. I did walk myself a little bit with Eva (the usual 1.8 miles to the end of Swazey parkway and home).
I continue to feel great and hope you do, too. I wish you a happy Labor Day; hope you have a three day weekend and that you feel appreciated for all your labor. For those of you who are in unions, especially if you are working to make your workplace or the world better, thank you. A final plug: if you are at all a sudoku fan, do check out the puzzles; some of them are really first rate.
Sunday, September 2, 2012
Saturday, September 1, 2012
Day 77 - totally normal normalcy
I continue without medical news. Dog walking (she stopped limping and then started up again after the walk), weaving (was able to get by without more heddles, just barely), going to Kittery with Terry to visit the Beach Pea and his studio complete with a new kiln (our usual Saturday morning activity) and a walk with Terry and Ellie in the evening. Also, the usual sudoku and NYT crossword (couldn't do it without googling).
I feel great. My taste is still goofed up; I really liked the idea of a chocolate croissant from the Beach Pea and was thinking my taste buds were returning to normal while I crunched through the tiny chocolate drizzle, but when I got to the chocolate in the inside, it just didn't taste right. It's so funny because my brain says, "Yes!" over and over although more dimly than it used to and then, the reality disappoints. Last night, I saw a really delicious looking desert go by and overheard the people eating it gushing over how good it was. I said to myself, "I think I'll get one of those" and then realized a second after that it would in all likelihood taste like saccharin. I was also able yesterday to jog a little bit (I do mean "little," my distance was measured in steps, 120-140, three times, but still). All of my punctures are healed with quite colorful scars, but they're all completely closed. I think I am firmly into normalcy at this point and I get to have fourteen days of it!
Continued normalcy for me, and if you like your normalcy, lots of it for you, too. If you are ready for something abnormal, I hope you get the best kind of it.
I feel great. My taste is still goofed up; I really liked the idea of a chocolate croissant from the Beach Pea and was thinking my taste buds were returning to normal while I crunched through the tiny chocolate drizzle, but when I got to the chocolate in the inside, it just didn't taste right. It's so funny because my brain says, "Yes!" over and over although more dimly than it used to and then, the reality disappoints. Last night, I saw a really delicious looking desert go by and overheard the people eating it gushing over how good it was. I said to myself, "I think I'll get one of those" and then realized a second after that it would in all likelihood taste like saccharin. I was also able yesterday to jog a little bit (I do mean "little," my distance was measured in steps, 120-140, three times, but still). All of my punctures are healed with quite colorful scars, but they're all completely closed. I think I am firmly into normalcy at this point and I get to have fourteen days of it!
Continued normalcy for me, and if you like your normalcy, lots of it for you, too. If you are ready for something abnormal, I hope you get the best kind of it.
Friday, August 31, 2012
some links that I liked
Here are a couple of things I found at various points recently that I really liked. You may enjoy them, too. I hope so.
I really like this cartoonist and have given some of his cartoons as presents. The cartoon is not the best of his, but the sentiment is exactly right: "Do your best work, focus on adapting and effecting change on what you CAN control. Let China be China. Everything will turn out okay."
Survival International works to help non-contacted, indigenous people to, well, survive. Their site is fascinating and, at times, incredibly depressing. I'd encourage you to look around. I find the idea of whole tribes of people living in the world right now who know nothing of the world outside their traditional group totally mind-blowing and think that is something worth preserving. Anyway, this is a happy slideshow "revealing some of the talents of tribal people in honor of the olympics."
Finally, evidently "Literary Mama" is quite well-known, but I had not heard of it before today. "Creative non-fiction" is, I guess, what this blog is, so I read the current offering for creative non-fiction--you know, to check out the competition. Wow! I think Felicia Schneiderhan really captures a piece of what happens when you become a mother.
I hope you enjoyed one or more of these.
I really like this cartoonist and have given some of his cartoons as presents. The cartoon is not the best of his, but the sentiment is exactly right: "Do your best work, focus on adapting and effecting change on what you CAN control. Let China be China. Everything will turn out okay."
Survival International works to help non-contacted, indigenous people to, well, survive. Their site is fascinating and, at times, incredibly depressing. I'd encourage you to look around. I find the idea of whole tribes of people living in the world right now who know nothing of the world outside their traditional group totally mind-blowing and think that is something worth preserving. Anyway, this is a happy slideshow "revealing some of the talents of tribal people in honor of the olympics."
Finally, evidently "Literary Mama" is quite well-known, but I had not heard of it before today. "Creative non-fiction" is, I guess, what this blog is, so I read the current offering for creative non-fiction--you know, to check out the competition. Wow! I think Felicia Schneiderhan really captures a piece of what happens when you become a mother.
I hope you enjoyed one or more of these.
Day 76 - no news like dog news
For the first time since consolidation, we went to dinner at the BlueMoon. It's been a long time since we've been there (like a whole month) and it was really nice to return. They had this incredible scallops and lobster with cream sauce and mushrooms dish that I had and Terry thought it sounded good, but couldn't have it because of the milk so the chef just whipped something up for him. Our waiter told us the chef had told him that he just threw together an aioli to go on it. Terry's dinner was delicious by report and looked it. I thought that was really kind of them to do and so far out of their way as to be like the next county over, and very, very nice. The hostess/owner also made a sangria for me that was not on the menu, but is by far my favorite alcohol to drink. Yum! We feel very cared for and as though our hearts as well as our bodies are nourished when we visit. This is why I dream about going to Blue Moon when I am in chemo jail eating hospital veggie burgers and other neutropenic fare.
Emily called and is enjoying her new job. Her roommate is coming back from Maine tonight so she is excited to see her. Ellie asked me yesterday to go on a bike ride with her today and Terry and I even went to the storage unit to get my bike this morning before he went to his studio, then Ellie backed out. We had a nice day anyway mostly just hanging out. I did some weaving, but miscalculated how big the project is so now I have half of my heddles (the white string like things) trapped on the wrong side of the loom and may have to make a pillow with the stupid dimensions of like 9 inches wide by 15 inches long. I was hoping for 15 x 15. I learned a lot from my last project but clearly not enough!
I took Maggie out to PEA today, another 3.5 mile day and when we were out in the forest on our last little bit, a woman came up to me and looked me straight in the face and said very seriously, "so, how are you?" I was a little surprised and asked her how I knew her. She said that we didn't know each other, but that she had had breast cancer and wondered how I was. We had a nice chat and after a couple of minutes figured out that her dog, Mollie, and our dog both get walked regularly by the same person so we almost knew each other. I certainly had heard about and even met her dog before. It's a small town after all. Somehow Maggie pulled something on our walk and when she gets up after a rest, she limps for a few minutes. A limping dog is awfully cute, but also really pathetic. The real wonder, given how she hurls herself around the forest and into the river is that she doesn't injure herself more often.
There continues happily to be no leukemia news. I continue to feel really well and to work on keeping my "exercise, mood and nutrition up" as Dr. Manno says. My next medical activity is Tuesday when I get another set of labs and a visit with Dr. Manno. I'm hoping that will all be very boring and that Tuesday's entry will be a discussion of the traffic in Manchester or progress on weaving pillows. I hope the parts of your life that you would like to be boring are.
Emily called and is enjoying her new job. Her roommate is coming back from Maine tonight so she is excited to see her. Ellie asked me yesterday to go on a bike ride with her today and Terry and I even went to the storage unit to get my bike this morning before he went to his studio, then Ellie backed out. We had a nice day anyway mostly just hanging out. I did some weaving, but miscalculated how big the project is so now I have half of my heddles (the white string like things) trapped on the wrong side of the loom and may have to make a pillow with the stupid dimensions of like 9 inches wide by 15 inches long. I was hoping for 15 x 15. I learned a lot from my last project but clearly not enough!
I took Maggie out to PEA today, another 3.5 mile day and when we were out in the forest on our last little bit, a woman came up to me and looked me straight in the face and said very seriously, "so, how are you?" I was a little surprised and asked her how I knew her. She said that we didn't know each other, but that she had had breast cancer and wondered how I was. We had a nice chat and after a couple of minutes figured out that her dog, Mollie, and our dog both get walked regularly by the same person so we almost knew each other. I certainly had heard about and even met her dog before. It's a small town after all. Somehow Maggie pulled something on our walk and when she gets up after a rest, she limps for a few minutes. A limping dog is awfully cute, but also really pathetic. The real wonder, given how she hurls herself around the forest and into the river is that she doesn't injure herself more often.
 | |
| me: good dog! Maggie: ball, ball, ball, ball, ball! |
 |
| See the speck about halfway to the telephone pole? That is Maggie's head. That thing by the shore is a rock. |
Thursday, August 30, 2012
Day 75 - Tom's wake
Most of today was spent in happy, relaxed summer activities. I wove a bit; I walked the beach (3.5 miles again, wet shoes, wet socks, wet feet, ah! my first time since my diagnosis); I ate blueberries and potato chips; I did the sudokus and crossword puzzles. Another day of ordinary ordinariness.
In the evening, however, I went to the wake for one of my CHH co-worker's husband. He was 55 years old and died at work on a construction site when he was hit by a cement truck. I keep thinking of how, perhaps even more than with the leukemia diagnosis, this has a before and an after that have a huge rent in between them and how can one put the two together? I looked for a reference on the internet, but I know I have seen pictures of those narrow but incredibly deep holes that form occasionally at fault lines after earthquakes. That is what I imagine it as looking like. Life before, life after, and in between this unfathomably deep fault in the earth's surface that is so narrow you could step across it.
Despite the fact that his death was tragic and shocking, the wake was really lovely. His children were beautiful and gracious (they're all in their mid 20's or so), his brothers and sisters were kind, engaging and so beautifully supportive of their mother. His co-workers were shocked and grieving him strongly, but the man behind me in line told some nice stories about Tom and made me feel sad that I had not had the chance to know him in life. His mother was beautiful and so deeply calm while being very very sad. I was glad to have gone.
A couple times when I was talking with people, I made reference to my leukemia and pointed to my bald head by way of corroboration and both times people seemed surprised by it, as though they thought I was bald as a fashion statement. I was super dolled up--nylons, fancy dress, necklace and earrings so maybe that had something to do with it and neither of them knew me, but wow! if I do the rest of the outfit right, my pate can pass for a fashion statement. Perhaps. Yes, me and Sinead, intentionally bald and beautiful.
After walking seven miles in two days and then standing for an hour in Dansko's my knees are really talking to me tonight. I am going to take them to bed a little early and see if sleep doesn't quiet their voices. I sure hope it does because I have a request for a bike ride tomorrow that I really want to honor. It will be our first of the summer.
I was quite moved at the wake; one of Tom's siblings said that he never wasted time and was always doing something, especially if that something was having fun. It made me think about how he did not have as much time as one would have assumed he would have. It is not hard to draw a lesson here.
I feel like I am a pretty good lesson-finder. I hope I am as good at learning them. I hope you are also learning what you want to and what you need to from your life. I also hope you have a safe and fun Labor Day weekend.
In the evening, however, I went to the wake for one of my CHH co-worker's husband. He was 55 years old and died at work on a construction site when he was hit by a cement truck. I keep thinking of how, perhaps even more than with the leukemia diagnosis, this has a before and an after that have a huge rent in between them and how can one put the two together? I looked for a reference on the internet, but I know I have seen pictures of those narrow but incredibly deep holes that form occasionally at fault lines after earthquakes. That is what I imagine it as looking like. Life before, life after, and in between this unfathomably deep fault in the earth's surface that is so narrow you could step across it.
Despite the fact that his death was tragic and shocking, the wake was really lovely. His children were beautiful and gracious (they're all in their mid 20's or so), his brothers and sisters were kind, engaging and so beautifully supportive of their mother. His co-workers were shocked and grieving him strongly, but the man behind me in line told some nice stories about Tom and made me feel sad that I had not had the chance to know him in life. His mother was beautiful and so deeply calm while being very very sad. I was glad to have gone.
A couple times when I was talking with people, I made reference to my leukemia and pointed to my bald head by way of corroboration and both times people seemed surprised by it, as though they thought I was bald as a fashion statement. I was super dolled up--nylons, fancy dress, necklace and earrings so maybe that had something to do with it and neither of them knew me, but wow! if I do the rest of the outfit right, my pate can pass for a fashion statement. Perhaps. Yes, me and Sinead, intentionally bald and beautiful.
After walking seven miles in two days and then standing for an hour in Dansko's my knees are really talking to me tonight. I am going to take them to bed a little early and see if sleep doesn't quiet their voices. I sure hope it does because I have a request for a bike ride tomorrow that I really want to honor. It will be our first of the summer.
I was quite moved at the wake; one of Tom's siblings said that he never wasted time and was always doing something, especially if that something was having fun. It made me think about how he did not have as much time as one would have assumed he would have. It is not hard to draw a lesson here.
I feel like I am a pretty good lesson-finder. I hope I am as good at learning them. I hope you are also learning what you want to and what you need to from your life. I also hope you have a safe and fun Labor Day weekend.
Wednesday, August 29, 2012
Day 74 - perfectly ordinary ordinariness
I am not sure I really need to write much more than the title and you will have a pretty good idea of today. I drove to Manch with Terry--he had to get labs done and I am not super booked most days so I enjoyed keeping him company. Then I did the NYT crossword puzzle alone (not nearly as much fun without Emily!) and did some weaving. Maggie and I went for a 3.5 mile walk in PEA and around town. She went swimming in the river and got relatively tired out. I saw my therapist, stopped at my favorite cheese shop and finally finished the too-long warp that I put on my loom like a month ago. I did learn a lot from it, but I am very tired of it and ready to move on to my next project (tomorrow!).
I had been postponing going in to the Cheese Shop because we know the owner well enough that we would have to have a conversation about my leukemia. As I've talked about before I am a little tired of telling people I have leukemia and I'm fine and I'm doing 5 rounds of chemo and ... so I had to wait for a day when I was in the neighborhood, in the mood and not neutropenic so I could eat the incredible double cream brie she sells. These things lined up today. At first Nancy didn't recognize me, then after a couple of minutes she said, "Cancer?" instead of "hello." I told her "leukemia" and that I was doing really well, had not had too rough a go of it and was expected to continue doing well. She asked a couple of questions and then we moved on to her telling me to tell Emily and Terry "hi," how was Emily liking U-Mass, etc. At the end of the conversation, she told me that God must have sent me in to her today because she was stressing out so much about one of her sinks being plugged and, now, she had been reminded that, really, it's not such a big deal. It was actually a nurturing retail interaction and I left with a big container of the world's best three bean salad and a nice big piece of this great brie. I felt badly for having underestimated Nancy and left, more importantly, with a renewed sense of admiration for her.
I am completely lacking in leukemia news or even thoughts. I think that's part of why I am "a little tired" of talking about it because it has moved into the background of my life for the most part and I don't like having to put it front and center and talk about it. I don't mind putting it front and center to do something about it, but just for chatting? Let's talk about something more interesting, like the weather.
Here's to a day of discovering more grace than we were expecting in other people and for me, and you, too, if you want it, ourselves.
I had been postponing going in to the Cheese Shop because we know the owner well enough that we would have to have a conversation about my leukemia. As I've talked about before I am a little tired of telling people I have leukemia and I'm fine and I'm doing 5 rounds of chemo and ... so I had to wait for a day when I was in the neighborhood, in the mood and not neutropenic so I could eat the incredible double cream brie she sells. These things lined up today. At first Nancy didn't recognize me, then after a couple of minutes she said, "Cancer?" instead of "hello." I told her "leukemia" and that I was doing really well, had not had too rough a go of it and was expected to continue doing well. She asked a couple of questions and then we moved on to her telling me to tell Emily and Terry "hi," how was Emily liking U-Mass, etc. At the end of the conversation, she told me that God must have sent me in to her today because she was stressing out so much about one of her sinks being plugged and, now, she had been reminded that, really, it's not such a big deal. It was actually a nurturing retail interaction and I left with a big container of the world's best three bean salad and a nice big piece of this great brie. I felt badly for having underestimated Nancy and left, more importantly, with a renewed sense of admiration for her.
I am completely lacking in leukemia news or even thoughts. I think that's part of why I am "a little tired" of talking about it because it has moved into the background of my life for the most part and I don't like having to put it front and center and talk about it. I don't mind putting it front and center to do something about it, but just for chatting? Let's talk about something more interesting, like the weather.
Here's to a day of discovering more grace than we were expecting in other people and for me, and you, too, if you want it, ourselves.
Tuesday, August 28, 2012
Day 73 - more on coordination of care
I felt so horrible yesterday that all I could think about was my virus. I completely neglected to update everyone on Ellie's first day of sixth grade. She is at the middle school now. The way our school district works is grades K-5 are each done in the towns and grade 6-8 (middle school) and 9-12 (high school) have kids from 5 surrounding towns. This means there is a huge influx of new kids for Ellie this year which should be nice. Some of the towns have like 40 kids to a grade so the middle school will probably be a bit of a shock for those kids. The Lincoln Street School where Ellie was last year has (I think) like 200 kids to a grade so the 120 kids in her 6 classroom "team" is not overwhelming at all. She knows a few of them already and should do fine at getting to know more. She was happy with her back to school outfits both yesterday and today and had a little bit of homework both days. I think it will be a good year. She likes her homeroom teacher so that's a good start.
The other news of my life is that today Emily left for college. She drove her Subaru station wagon to Amherst, MA all by herself and moved into her room all by herself. She is getting to move in early because of her job and her roommate is still on vacation in Maine so she had to arrange the furniture all by herself. Last year when she moved in, we all drove up with her and helped move furniture, carry boxes up the stairs, etc. In fact, Ellie got to miss a day of school to do it. This year, she just backs down the driveway and is gone. She called to let me know she got there safely which was much appreciated.
Otherwise, today was another largely quiet and uneventful day. I tried to do last Friday's NYT puzzle on my own and it just wasn't any darned fun. I found out yesterday that Will Shortz shares my birthday. He is a little bit older than I am, but was also born in the MidWest.
I wanted to talk a little bit about coordination of care. You will easily draw the conclusion, but let me tell you the story. So, on Monday, my labs were really good (it turns out I misread my lab results and my ANC is actually almost 4,000--so that's normal). I asked if I should keep taking my anti-fungal, anti-bacterial and anti-viral. Dr. Manno told me he thought yes, but that I should ask Dr. Hill. I called up and by the time they got back to me, it was today. They said no more anti-this, that and the other and that I didn't need any more labs until my next visit to start chemo jail on September 14. Then about 40 minutes later Dr. Manno's office called me and asked me to come in next week for labs and a visit with him. They pointed out (rightly) that my platelets and hemoglobin are not normal yet and that they would like to follow them to normal. Of course, it's all a matter of what one worries about; there really is no reason my hemoglobin and platelets should not continue towards and into the normal range, but it's always nice to witness and prove these things.
The conclusion, which I think is pretty self-evident, is that NCCC in the north and south would end up looking a lot more smooth and coordinated if they shared their plans with each other. It is kind of awkward to have two fully independent hematologists. They are well coordinated in that Dr. Manno is clear that he defers to Dr. Hill in my case on all things directly related to the treatment and I have been impressed with how well they do that piece, but it would look so much nicer if the little auxillary pieces were in place. I don't feel my care is compromised in any way, just the elegance and style.
I spoke with my friend Linda from Minnesota today and we reminisced about when Ellie was born. Her family were our first visitors in the hospital and she agreed that it was so nice to have a loving, happy thing in their life at that point. I think Ellie had not even had her first bath at that point and was a little less than pristine, but, o, so cute!
My cold is about the same. Last night I woke up with a stuffy nose and whenever I wasn't blowing my nose or sneezing, I could hear Emily coughing. What a contageous household we have here.
I am hoping for a day without excessive mucous for myself tomorrow. That is a fairly prosaic wish, but I will wish it for you, too.
The other news of my life is that today Emily left for college. She drove her Subaru station wagon to Amherst, MA all by herself and moved into her room all by herself. She is getting to move in early because of her job and her roommate is still on vacation in Maine so she had to arrange the furniture all by herself. Last year when she moved in, we all drove up with her and helped move furniture, carry boxes up the stairs, etc. In fact, Ellie got to miss a day of school to do it. This year, she just backs down the driveway and is gone. She called to let me know she got there safely which was much appreciated.
Otherwise, today was another largely quiet and uneventful day. I tried to do last Friday's NYT puzzle on my own and it just wasn't any darned fun. I found out yesterday that Will Shortz shares my birthday. He is a little bit older than I am, but was also born in the MidWest.
I wanted to talk a little bit about coordination of care. You will easily draw the conclusion, but let me tell you the story. So, on Monday, my labs were really good (it turns out I misread my lab results and my ANC is actually almost 4,000--so that's normal). I asked if I should keep taking my anti-fungal, anti-bacterial and anti-viral. Dr. Manno told me he thought yes, but that I should ask Dr. Hill. I called up and by the time they got back to me, it was today. They said no more anti-this, that and the other and that I didn't need any more labs until my next visit to start chemo jail on September 14. Then about 40 minutes later Dr. Manno's office called me and asked me to come in next week for labs and a visit with him. They pointed out (rightly) that my platelets and hemoglobin are not normal yet and that they would like to follow them to normal. Of course, it's all a matter of what one worries about; there really is no reason my hemoglobin and platelets should not continue towards and into the normal range, but it's always nice to witness and prove these things.
The conclusion, which I think is pretty self-evident, is that NCCC in the north and south would end up looking a lot more smooth and coordinated if they shared their plans with each other. It is kind of awkward to have two fully independent hematologists. They are well coordinated in that Dr. Manno is clear that he defers to Dr. Hill in my case on all things directly related to the treatment and I have been impressed with how well they do that piece, but it would look so much nicer if the little auxillary pieces were in place. I don't feel my care is compromised in any way, just the elegance and style.
I spoke with my friend Linda from Minnesota today and we reminisced about when Ellie was born. Her family were our first visitors in the hospital and she agreed that it was so nice to have a loving, happy thing in their life at that point. I think Ellie had not even had her first bath at that point and was a little less than pristine, but, o, so cute!
My cold is about the same. Last night I woke up with a stuffy nose and whenever I wasn't blowing my nose or sneezing, I could hear Emily coughing. What a contageous household we have here.
I am hoping for a day without excessive mucous for myself tomorrow. That is a fairly prosaic wish, but I will wish it for you, too.
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