Electromagnetic sensitivity

Would you like to live inside of a microwave? That is what protesters say of the new 'smart' meters that the local energy company is installing that will keep tabs on ones energy consumption by radio waves. These things are outside the house as opposed to our cellphones and wireless routers that are inside the house. These will make meter readers obsolete, which is fine by me. I am still angry at one who wanted to trounce through my flowers rather than walk 20 feet farther. Rather than do that, he just estimated our energy use resulting in  a bill 4 times normal leading to lots of phone calls. Yeah, I can do without that.

This was the subject yesterday in our pseudo newspaper. It made me sad how ignorant people can be and how this newspaper spread their brand of pseudoscience. Instead of interviewing medical doctors or electricity experts, they interviewed a psychic and a so-called environmental doctor who believes that electromagnetic radiation is the root of all evil. He said it causes 100% of cancer cases. Did cancer exist before cell-phones and TV and radio? Not in his mind. The psychic particularly interested me. Apparently she has electromagnetic sensitivity. I used to live in a house with her years ago. Another of our cohabitants ran into her about 15 years ago at a psychic fair. The psychic stared at her and said something about her looking familiar.


Well you're the psychic. This should be easy for you.

Maybe too much cellphone radiation in the room interfered with her psychic ability though this was before cellphones were so prevalent.

In the past week, three of my family members have gotten new jobs. Julia also received her master's.Shanna's family arrived safely in Boston. All seems well.

Yesterday the early morning temperature was only 24 rising 40 degrees during the day. We finally could take our many houseplants outside decluttering the place considerably. Later we had dinner out with Josh and Julia, which was pleasant as always.

I ran between thunderstorms this morning. The local soil around here is clay, which when  very wet forms a slippery layer (in my pottery class, we called the stuff 'slip'). It was hard to get good footing in spots on the dirt road I love to run on. Usually it is kind of spongy as it goes through wetlands which is good for my legs. I saw a few pairs of pretty gold finches and one turkey vulture. It has been a while since I have seen a deer. I would have thought the easy winter would have increased their numbers.

photofunia

My triple negative tumor is different from your triple negative tumor

Classifying breast cancer as triple negative just tells you what your tumor is not. It is not sensitive to estrogen, progestins, or does it over express the Her2 oncogene. It is akin to classifying an animal as something that does not have feathers, does not have antennae, and is not green. One is left with a whole bunch of animals that it could be.
The greatest recent advances in cancer therapy have been in targeted therapy (versus early chemotherapy in which all fast growing cells are killed in the hope that the cancer cells will be killed too: this is what was offered to me). What should be targeted in TNBC? Recently scientists tried to characterize 100 tumors from 100 different TNBC patients looking for gene sequences in common in hopes of finding something to target. They found very little in common. Even worse, the tumor cells were not the same even in a given patient. In the recent past, PARP inhibitors have been used successfully in some patients, notably ones who have the BRAC1 gene deficiency which is associated with some cases of TNBC. But they have not been effective against all TNBC patients with  mets. Various researchers have had conflicting successes with identifying a factor that may in the future give us quadruple negative breast cancer (or at least the name): androgen. Healthy breast cells are sensitive to androgen as are cancer cells that still haven't differentiated too far from the original tissue. Initially TNBC seems more aggressive as defined by growing faster that are androgen positive but it is not clear if androgen positive tumors have a greater tendency for metastasis. As far as I know, there have been no clinical trials for this though the drug itself should be easy enough to find. Perhaps the androgen blockers used against prostate cancer could be used.

I LOVE TO GENERALIZE FROM ONE EXAMPLE

I saw this on a T-shirt recently. So easy to fall in this trap though usually I use more than one example. To soothe myself over the past few years, I have tried to look for evidence that TNBC is not as fatal in post menopausal women as it is in premenopausal. There have been no specific studies I can find. There are studies that indicate BC in general is more deadly in younger women giving the reason is that it is more likely to be hormone negative but nothing that compares pre versus post with the same tumors. Frustrating. So I am left with anecdotal evidence which is this: ladies with TNBC and are postmenopausal who blog are still all alive. The younger ones who blog are not all still alive. Drawing conclusions from blogsphere can be misleading. I could conclude that most TNBC patients are white because I haven't seen many blogs from African-American patients but according to statistics, this would be very wrong.

My dogwood out my window

A record cold today but hopefully this should be the end of frost for a while. My legs are exhausted from so much running. I hope to have enough energy to tackle more projects today. Meanwhile, Shanna's family slowly inches home. When we had two toddlers, we would travel long distances at night because Josh during the day would become intolerable if confined for more than a few minutes. Throw a baby in the mix and one has the  recipe for not a fun time. They have just one more trip to endure and that will be a toughie as moving all their possessions will be involved.

Grandbabies

Oliver about to go down the big slide

Ms. Tess: now 1 month old

Daniel on a slide

Oliver is to the left hoisting himself up. I bought another pass to this place in anticipation of their return

Add caption

Daniel not sure about sharing space with Maya

Trying to get all 4 kids together: mission impossible

Maya trying to kiss Daniel

Feminine scientists fail to motivate girls

This was the title of a bizarre article in our local on-line paper. Initially I thought it was a misprint; didn't they mean female, not feminine? But no, they did mean 'feminine'. So what would that be? Women dressed in pink and wearing make-up apparently. Middle school aged girls were exposed to two groups of female scientists: one group dressed in pink, wearing lots of make-up and the others, plain Janes, no make-up and drab clothes. The thesis is that the girls would identify more with the pretty scientists but instead they did not take them seriously.

I was a female scientist who often spoke to groups of students of various ages: preschoolers up through grad students. Since I was usually demonstrating something, I wore a lab coat and lab glasses, which I guess would not make me look very feminine. I do wear make-up because without it, my fair, bland features would make me look washed out. I did want to interest girls in science but often found it much easier to reach boys who seemed much more engaged in what I had to say or what I was doing. High school girls in particular seemed especially bored though one became so interested, she became my lab assistant for a few months. (her twin became internationally famous when she was abducted by the Taliban as a reporter; fortunately she was released after 6 months of intense worry). But it is gratifying to know that I didn't lose my female audience because I wasn't pretty enough or because I failed to wear pink.

And just how feminine am I? Growing up, the answer would be not very. A 6th grade teacher took me aside one day to tell me that if I continued to walk the way that I do (stomping my feet as loudly as possible) I would NEVER have a husband. Feminine girls were petite and soft-spoken. I was big and loud. If someone hit me, I would hit back, which I was told repeatedly was not the proper response for a girl. Although I read just fine, I was always stronger in math and science. I was told by several adults that I had a 'man's mind'. Later I had mainly just male friends because I couldn't grasp the nuances that were involved with women. My mom once told me that I would never have a period because I was so unfeminine. But I can cook, sew, embroider, crochet..all those girlie things.  I do want to look pretty.

And for the first ten years, I was one of the few women in my field. If I wanted to have friends at work, they would have to be men. I had fun. Later, more and more women started working in my department. I actually received an e-mail from one of them yesterday needed advice for a chemical problem. It's been a while since I've dealt with chemistry.

Shanna and her family returned to Boston today. But in a month or so, they will be back for good.

Returning to Michigan...

Would be Shanna and her family. They received the good news a week ago just as they were preparing to move to a different state, much closer than MA, but not quite as 'charming'. They have been here for a week arranging details. They will go back to Boston tomorrow and then return here in less than a month for good.

So I will get to see my grandbabies grow up more regularly. Sometimes almost 6 months would go by without a chance to visit. Happy, happy, joy, joy.

 This week I've been busy between seeing my family, going out for birthday meals, running, shopping, cooking, going to Maya's therapy, going to bouncy castles, etc. Yesterday for example, I did not get to rest for more than a few minutes until after 8. I was too tired to even trot outside to see some of my new solar lights.

I've also started out some of my projects: my garden and dealing with photos. I've cleaned up some of my gardens a little bit. First thing I did was grab a stinging nettle with my bare hands.When will I learn? I've cleaned out my rock garden which is currently overrun with lilac colored phlox and snow on the mountain, which has not bloomed yet. Still lots of work to be done. Next week...

The bags of photos and the boxes that I took out to recycle

My father spent almost every spare moment taking pictures mostly with large format cameras. When I was in Boston, we watched Fur, a semi-biographical movie about Diane Arbus. I recognized her large format cameras from my childhood: the Graflex, Hassalbad, Leinhoff. The medium format cameras my father had were the Mamiyaflex, the Topcon and the Leica. He wasn't fond of 'small format' cameras such as 35 mm ones as the photos could not be enlarged to his satisfaction. Nothing was automatic. He did have a photometer to measure the light intensity. The correct exposures and f-stops had to be calculated. I was probably one of the few 8 year olds that knew the formulae.  He sold his work to various stock photography companies around the country. They kept a 50% commission but still, for some photos he would get several grand. Digital photography mostly put an end to his side business. Since his death, these stock photography businesses have been sending me all the photos he had on file. Thousands of them; all colored transparencies. Boxes and boxes and we have very little storage space here. My brother has some of these boxes too. So the other day, I put on some music and spent 4-5 hours sorting through these things. He had a few pictures of our family and of our pets thrown in the mix so I didn't want to throw those out. Most of the photos are scenery particularly of the Canadian Rockies and Vermont in the fall, his two favorite places. But often he would take twenty variations on the same scene. I would keep just one of the twenty.

Me at 5 or so. Transparencies do not scan well on my scanner though a friend has access to  a slide one so someday I can scan these properly. My mom wasn't  too interested in  hair styling as she said I had bad hair, straight as an arrow and fine. Eventually long, straight blonde hair came to be socially acceptable. Fortunately, it became thicker as I aged.

Swastika

Last week, my sister-in-law, a high school teacher, came to her classroom to find a swastika decal on her door. It seemed to be a stylized version of one; the arms were not of equal lengths as the Nazi one, but it clearly was a swastika.

What was the message here? She is Jewish as are many of the students. She has the same last name as I do as we are married to brothers, from which I guess one could infer that we are Jewish (though I am not).. She was fairly certain due to its timing that one of her current students in that particular hour put it there. She lectured the class on how odious that symbol was especially given that she lost so many relatives in the Holocaust.

She later learned that this decal was a symbol for some local African-American/Puerto-Rican rap group and that they were passing these out to get publicity for their group. Apparently these kids are clueless. They don't realize that if they were around when the Nazis were, they would have been sent to the camps too. So would the Russians, a large subset of the student population , as they were "Slavic" not "Aryan". The kids just saw the symbol as "bad-ass". The symbol is also that of some white supremacy group, so delightful. They would not be amused about the rap group using their odious symbol.

Things like this scare me. I realize that there are so many hateful people who would love to eliminate my grandchildren just due to their ethnicity.

I have warned Naomi that there are many areas in the country where she, Don'tae, and Maya would not be welcome. It wasn't that long ago when their marriage would have been illegal in many states. She could see some of this herself with the attitudes of the fans when her mostly African-American basketball team went to away games in the 'white' little towns. She wondered when we were in Philly whether we were south enough to be in some kind of danger. (south is where the racists are in her mind). I told her that Philly was founded by Quakers, the first people who went on record to say that slavery was sinful.

When I was in Switzerland 10 years ago, the inn keeper was German speaking though we were in the French speaking section. She had wondered about the origins of my last name as this 'was obviously of interest to her". Not obvious to me though. Was she trying to figure out whether I was Jewish or maybe she was thrilled to find another German descendant? At anyrate, it is NOT the name I was born with. I was already on her bad side as I had agreed to share a bed with a woman, which apparently there, one never does unless....
The word for a double bed in Italian is 'matrimoniale'. Double beds are for married people, not good friends trying to save money.

It is sunny but cool and windy. Not good for entertaining grandkids outdoors. Yesterday morning I took the boys to the bouncy castle palace so they could jump away their considerable energy. Oliver especially enjoyed it. In the afternoon, I had Ms. Maya. I tried to run in the gale force wind in between.

Big changes afloat for all of my kids. I just hope everything works out.

Surviving Triple-Negative Breast Cancer: Hope, Treatment, and Recovery

The title is a book by Pat Prijatel, a TNBC survivor and journalism professor, that will be out in print this fall. I was honored to review the rough draft and know it is a much needed book, especially for the newly diagnosed. Before it comes out, Pat can be accessed on Facebook, Twitter and on her excellent blog, Positives about Negatives (http://hormonenegative.blogspot.com/). Over the past 5 years, she has carefully scanned the literature for any news about this disease. She has made me lazy. Why should I search  when she has done all the work?

Newly diagnosed breast cancer patients are urged to obtain Susan Love's Breast Cancer Book, which I promptly did. But in 2008 when I was diagnosed, there was not one word about TNBC (though the latest edition now discusses it). All sorts of info and epidemiology on estrogen positive BC, which mostly does not pertain to TNBC. There was some mention of the more dire prognosis of estrogen negative BC.

So I scanned the internet for news and research. The popular press had plenty to say: deadly, dismal odds of survival, a new deadly disease (nothing new about it other than the name) but one has to take what they say with a grain of salt. They have to grab your attention with those scary words. On to the more scientific literature which is supposed to be  devoid of emotion. Still saw the same scary words. Bleak, deadly, poor chance of survival, aggressive. What exactly did they mean by these terms? These articles really scared and depressed me. I honestly felt that my remaining time on earth would be short and painful.

Well all is relative. Relative to ER+ cancer, TNBC is more aggressive and deadly. But not by that much. Most people do survive TNBC. And there are some advantages to having it vs the ER+BC (in case you are the position to select it at the cancer store). No taking tamoxifen and those aromatase inhibitors for 5 years (and now they are thinking that perhaps the period should be longer) Not only are they very expensive (and co-pays keep getting larger) but chock full of side effects; painful ones.

It is true that if TNBC comes back, it does sooner than later, but if you can survive 5 years, you are home-free whereas the ER+ folks are still at risk for a recurrence10-15 years after the primary occurrence. At 3.5 years out, I think my chances are about even now with the ER+ ladies and are constantly dropping.

Fortunately it did not take me long to find Pat and discuss via the internet our joint concerns. But I would have very much appreciated this book-to-be way back when. When it comes out, I will urge my treatment center library to have copies along with the various cancer support agencies.

Cancer is becoming an increasing smaller part of my life almost to the point of just an occasional thought. It has been 3 years since my treatment ended. I am now to be checked out twice a year versus every 3 months ( I did skip a lot of those as the visits are not covered by insurance and I learned very little from them). But it does not take much to bring it back front and center. For instance, I have a minor pain in my rib, a common site for bone mets. Pat recently had an online discussion about lingering pain and 4/5 women said they had the exact same symptoms as me.

Lost and found then lost and FINALLY found

My birthday cake

Growing up, I had a very good friend who I will call PM. Shortly after high school, she left the state, got married, had a baby and returned to Michigan. The baby will be 40 this summer. We kept in touch for about a year but then she left the state, then the country, and who knows where she was?

About 10 years ago, she went looking for me at my parent's. Steve and I flew down to Florida to meet with her and her then husband before and after a cruise. We had a great time reconnecting and kept in touch over the next few years with long phone calls late into the night. But one day I went to call her and both her cellphone and home phone were disconnected. WTF? Was she still alive? Why didn't she contact me?

She has a very common name as did her various husbands. I thought that she may have moved to SC to be with her son and her sister, who had married someone from my high school. Just last week I was poring over my brother's yearbook to see if I could recognize the boy who would be my friend's brother in-law.(Turns out I should have been searching my own yearbook, he was closer in age to me than my brother). He has an uncommon name but I just couldn't remember it. I went to the HS reunion last summer hoping to find someone who had contact with her. No dice though I did spend the time with her other best friend (who will be happy to hear of my progress).

Last January, I decided to look for her sons. One has a name way too common but the other I found had many details indicating that he might be her son. I sent him a letter not knowing if the address I had was valid. I gave my phone numbers and begged him to share them with his mom. I heard nada. Oh well, maybe it wasn't the right address or he didn't feel like being a messenger or maybe she didn't want contact, who knows, so I gave up.

One thing I don't do, to the chagrin of some of my friends, is text. Yet I keep receiving these things though I don't open them. Last week while in NY, I was scrolling through them before deleting them all and I noticed one from her...way back in January.

I called her as soon as it was late enough to be decent. No answer. I texted (with Naomi's help) No answer. I called later in the week when I got back to Michigan. Nada. But today, she finally answered her phone so I have a friend again.

This BTW is not the present I was referring to in yesterday's blog though it is a very good present.
Presence not presents...this is what I want and what I got and will get. Bonus: Another good friend will be here in June.

Also, the present isn't another grandbaby though that would be nice. But presence...that's all I can wish for but I can't go into detail publicly yet. Some things are not set.

Yesterday was nice. It was my 59th birthday which sounds impossibly old. I did not turn 60 yet though I did by Eastern reckoning Steve, Shanna, Tessa and I went out for a nice lunch (though Tessa slept through it all). Later we all convened at Josh's. Julia was out of town and Josh does not cook. So Steve sort of catered our dinner and it was fine. All my babies and grandbabies together..what else could one want? And a good friend dropped by to visit us all with presence and presents especially appreciated by the older kids.

The 2 grandgirls. Hard to believe that Maya was smalle than Tess

Tess sort of smiling

Maya kissing the baby

Hard to keep 4 kids in one place for more than a minute

The 60 year cycle

According to Chinese tradition, this is the first birthday I can celebrate. I am not 60 by western standards but according to my Taiwanese sister-in-law who was born in the same year as me, we both are. The way Asians calculate birthdays, a few newborns depending on when they are born could be considered 2 years old.

Today Ms. Tess turns the ripe old age of one month.
It also marks the 3rd anniversary of my last day of cancer treatment.

And so far, I received the best present I could hope for...details later.

Last Day in Brooklyn

My niece in NJ with Maya. I was at her birth 23 years ago. She has older twin sisters who are graduate students  at Columbia and Harvard. She is getting her PhD in physical therapy  and was in the middle of finals when we arrived. she found some time to play with Maya

The family (minus me) at the Polish Restaurant. Standing in the door is my nephew who flew in that day

Bay Ridge row houses near the restaurant

Bumper sticker in the neighborhood. Not everyone is Jewish

The sibs

Maya loves big shoes

Maya at McDonalds somewhere in the middle of PA on the way back

The Polish restaurant we ate at

Me panning the commercial district of  Bay Ridge on Third Avenue. Many years ago, we ran the NYC Marathon starting in Staten Island, crossing the Verranzo Bridge and then on to the parallel 4th Avenue

We are back now after 2 days of travel and 6 days of exploring NYC, NJ and Philly. I've been
 gone 37 out of the last 49 days and my house and yard reflect that. Currently I am waiting for 
Shanna to call me. She has turned her phone off. They probably got in in the middle of the night
 and are sleeping (after 11 am) but I worry after such a long trip with tired drivers. Update: She 
did call. all is fine but they were on the road for 17h. Tessa needs to be fed every 2-3 hours and
 the feedings take 1h. And it is 750 miles with 2 border crossings.

I didn't find time to run my usual distances on this trip but somehow I did find time to eat, too much
 at that. Not a good combo. I am trying to make up for it now and went for a long run in the cool 
air on the country road I like this morning.

On Wednesday, our last day of vacation, I did get up early to run in my brother's neighborhood
. As it was rush hour, I didn't want to stray too far. Unlike the sauna I had run in 2 days earlier
 almost leading to my collapse, it was cool especially since I had just put my sweaty clothes in
 a plastic bag forgetting to throw them in the wash.I ran near the Acela tracks, the fastest train
 in the US, running between Washington DC and Boston. I heard a train whoosh  by every 5
 minutes. Lots of people in his neighborhood work in Manhattan and can get to midtown in 30
 minutes. Hopefully one of these people will buy his house.

Once we thought the traffic cleared, back to Brooklyn. 48 miles by the odometer but it seems longer.Steve's sister's son had flown in from Seattle that morning, a red eye so he was plenty
 groggy. 

Brooklyn is full of neighborhoods full of different ethnic groups. Steve, from age eleven, lived
 in Brighton Beach on the border of Coney Island. Brighton Beach was mainly Jewish but now
 is full of Russians so the signs are in Cyrillic letters. I think most of the Russians are secular 
Jews. His brother lives in a mainly Orthodox Jewish neighborhood, Midwood so no restaurants 
are open on Saturday and they are either dairy or meat but not both. There are many Italian neighborhoods usually adjacent to the Jewish ones. While we were there, we ate in the 
Gravesend, Bath Beach and Bensonhurst neighborhoods, the Italian neighborhoods. We
 bought rainbow cookies at different bakeries that just happen to have rhyming names, one
 on Avenue U and the other on Avenue X. One was excellent with plenty of marzipan in the
 batter (I love almonds), the other no marzipan so I won't go to that one again. We also
 bought tasty cannoli, very good, but the macaroons were dry and filled with coconut, 
not the moist almondy ones from the North End in Boston that I love.  Bay Ridge, where we
 went on Wednesday for lunch, is a mix of lots of groups. Remember Saturday Night Fever?
 We went to a Polish restaurant touted to be the best in NYC. It was very good but the food
 was quite different than the Polish restaurants they have in Detroit. Maybe an Ukrainian
 influence? I had tomato soup, which initially did not sound promising. Most of the soups had
 the dreaded (to me) potatoes in them but this was a tasty mix of dill, sour cream, noodles
 and tomatoes. Yum. Steve had sauerkraut soup, which contained pickles. Most people
 had blintzes and loved them. I went for various flavors of pirogi, mushroom, sauerkraut
 and cheese, with fried onions and sour cream. all bad for me but so tasty.

We spent the rest of the day chillaxin' at his brothers eating Italian sweets. They were all going
 to see Wicked on Broadway, which would have been fun but a pain to arrange. Listening to
 the traffic radio, we decided that there was no way we could go to Manhattan to leave
 without becoming mired in traffic so we had to go on the expensive but convenient bridge
 out stopping in North Jersey for food that Don'tae would not find so weird (he didn't want
 to even try Polish food).

Then yesterday, our 11 hour trip home. Maya tolerated this ride better than coming here. 
We stopped three times for her to run around. We went back a different way spending
 more time in Jersey going along the Delaware River for miles. Very pretty.

Below are photos of Maya at a park near my brother-in-law's
I finally added most of the photos from my trip from the last 4 or 5 posts.
Waiting now for Shanna's family to come here.

Jersey Shore: Michigan style

View from 5 to 10 miles away in NJ. The red object to the far right is the Parachute Jump on Coney Island

It was not so hot and humid today: a beautiful day for the beach. Distances are hard to gauge here as the roads twist and turn but I think it is around 30 miles to the closest beach town. First stop: Ocean Grove full of nicely kept up Victorian homes and a very cute downtown full of boutiques. We ate outside at a cute Italian restaurant.  We walked along the boardwalk into the next town, Asbury Park, home of Bruce Springsteen. Not so nice and had some seedy businesses along the Boardwalk but we loved the murals (wait for them). We drove north as far as we could along the water to Sandy Hook, a pennisula that Steve could see from his bedroom when he lived in Coney Island but never visited. It is part of The Gateway National Seashore, part of which was near him in NY. There was an old Army base there where there was munition testing. There were a few signs warning about unexploded ordinance. There was also a sign on the road warning of terrapins crossing, a new sign for me. I was surprised to see prickly pear so far north. We ended up setting up camp directly across from Coney Island. We could see the Parachute Jump, the Verranzo Bridge, the New World Trade Center and the Empire State building all at once. I let the GPS figure out a way home, never again. It was mostly expressways (tolls!!!) but probably took twice the miles.

Weird Signs:

It is Easy to get Lost in New Jersey! (No kidding! This seemed to be from the state tourism board.)

Favorite bumper sticker: Don't Hate on the Garden State

While I was fishing around in some car compartment, I came across my Garden State DC, perfect music for driving the Jersey Shore but alas, it was empty.

Three of the above are my pans of the beautiful Victorians in Ocean Grove NJ. The Sea Monstor mural is in the Asbury Park Casino remains. No KP, I didn't see the clam downtown but I might have overlooked it.

Close-up of detail

Center meeting house. this whole town is a Methodist retreat with church meetings in this auditorium and in an outdoor one on the beach

Crosses all over the place

Asbury Park Boardwalk         

View of the Verrazanno  Bridge from Sandy Hook with my cheap camera

Dead horseshoe crab

Blue crab?

Noisy seabird

Using Steve's camera from Sandy Hook NJ.  Coney Island and Manhattan. Large building is the World Trade Center rebuild