Monday, February 28, 2011

Oliver originally qualified for early intervention due to a speech delay. He is so gifted in other ways, we were certain that he would be able to compensate for his enuciation issues. Plus I have seen this before, with Josh asking to go fwimming and for me to read him a 'pooky tory'.But at 3, Oliver was re-evaluated and was found to speak age appropriately. So no more classes for him until he goes to preschool this fall. But Shanna enrolled Daniel in Oliver's former enrichment class and we went to Jamaica Plain to watch him through a one way mirror. Oliver was out of sorts because he really loved the class but aged out. Daniel isn't used to being minus his mom but he knew the teacher so he didn't seem upset when Shanna disappeared.

Oh this weather! Somehow a forecasted dusting of snow yesterday turned into 4 inches and overnight, freezing rain coating the sidewalks with glare ice. Not to worry, temps in the high 40s were forecasted but..this did not happen either. I ended up running in a large parking lot just to be moving a little. At least the also forecasted gale force winds didn't materalize.

The Oscars were fun to watch..favorite dress? That blue shiny number of Anne Hathway with a rose lace dress on Scarlett J. as a second. I love Colin Firth, the infamous Mr. Darcy.

Sunday, February 27, 2011

Ice-9 is a theoretical polymorph of water that has a melting point above 100 degrees. A seed crystal of it would cause the oceans to freeze, our blood to crystallize, etc and it would be the end of life. It is discussed at length in The Cat's Cradle by Kurt Vonnegut. OK, so that's science fiction but here in Massachusetts, there appears to be a polymorph of water that I will call Ice-MA. This stuff forms at temps above 32, resists the sun, and salt has no effect on it. I noticed it as soon as I crossed the NY-MA border in the middle of the night. The car thermometer read 34 which I thought meant, no freezing but the snow was piling up fast and furiously. As I climbed into the Berkshires, the temp dropped to 31. Curves, hills, ice, semi comatose driver, suicidal truck drivers...a perfect storm for disaster. It wasn't until I dropped into the foothills and the temp was 37 degrees that the snow finally turned to rain so I only had the MassHoles (up and about now as it was early morning commute time), hydroplaning, and increasing fatigue to contend with. What are Massholes? A particularly aggressive species of driver native to the area that slow down for nothing. Normally I don't mind them, prefering them to the super cautious yet incompetant just learning drivers populating the NE sector of Ann Arbor, but with my now sketchy reaction time, they were scaring me.

When I don't get to run, I become crabby. Thursday was spent quizzing Naomi for her test FRiday (cancelled due to the weather..HA!!!). Torrential rains and wind here Friday that later turned into an ice storm didn't make running too attractive plus the fact I came here to see the babies and was tired beyond belief. Since I was too lazy to go to the office Friday for the weekly pass to park here without being towed, until Monday I have to move the car and get a daily pass every day. The car yesterday was encased in ice despite it being above freezing and sunny. Damn that Ice-MA! I waited most of the day for the sun to burn through that ice. Finally right before sundown, amazingly early here, I attempted to run on the beach path. All covered with snow still despite days of 50 degree weather! I finally found a semi-clear path about a mile from here though I had to run on frozen sand to get there and of course the wind was unbearable. It was supposed to be warm today and it is ,,but a new 3 inches of snow fell.

But I didn't come here to run..no dear Readers. I came to see the babies. It is sad that I can see them so rarely. Daniel does not remember me from one visit to the next. In November, he recoiled from me in terror..stranger, danger!...I would approach him asking if I could hold him and he would solemnly shake his head No. He was awake when I came Friday morning and ran to me..very sweet. He now has a head full of thick curls, very cute. Oliver has become very chatty though I still don't know what he is saying most of the time. But I love being with them.

Yesterday Shanna and I went out to lunch, WITHOUT babies, a treat for her.Nearby is Little Viet Nam and we went to their nicest restaurant though I still prefer Dalat in Ypsi. Up and down Dorchester Avenue are bakeries promising French baked goods. Sounded good to me but after stopping at several of them, the baked goods in question were baguettes stuffed with dried fish..NOT what I had in mind. But I will get my baked good fix in the North End with the various Sicilian bakeries so don't feel too sorry for me.

At night, Shanna and Ramy went for a very rare dinner together WITHOUT babies. This of course meant that someone would be with babies. Stranger..danger indeed! Oliver clung to his parents' legs pleading for them not to leave..please take him too. Once Daniel figured out they left while he was otherwise occupied, he was furious and demanded to go out to look for them. But after a very rough 10 minutes, the parents were forgotten. Oliver and I put together a puzzle and Daniel played with his trains. Not much drama aside from Oliver's tendency to throw everything back on the floor after I cleaned everything up.Yep I am being tested.

Saturday, February 26, 2011

So I left early on my ardorous journey when I noted that the snow that had melted during the day was quickly freezing and that a new storm was coming our way. I had planned to leave very early Friday morning as soon as I woke up. I am very good at falling asleep but not good at staying asleep.Instead of Ileaving at 3 am with 4 or 5 hours asleep under my belt, I left at 6 pm with no sleep. Fortunately the drive was fairly clear until I reentered the country in NY around 11 pm. No waiting or delays in customs. There was a flashing sign on the freeway saying severe winter storm warning beginning 3 am. But I seemed to be 4 hours ahead of it. It meant though that I really couldn't stop for the night.I stopped for gas and food around 2 am. 420 miles/11 gallons: Love the micro car's mileage! New York is a very wide state..miles and miles. Around Syracuse, it started to rain. Fortunately the car thermometer said it was 36 deg out, no worry about ice, my enemy. However, after I crossed the Hudson and started climbing into the Berkshires, I was greeted with very heavy snow blasting my window with its mesmerizing flashes (Tyndal effect?). I seemed to be the only car on the road but there were plenty of trucks and they weren't going to slow down. My windshield would be temporarily covered with slush by the trucks with no tire shields..that should be illegal. I was no longer sleepy as I was terrified that any moment I would hit a patch of ice and get into the path of a semi. At 4 am, I stopped for coffee and to unclench my muscles giving the salt trucks some time to hopefully clear a path. Except the Berkshires have saltfree zones! I had about an hour of pure hell worrying about the ice and the trucks until I got to the level of Springfield where the snow morphed into rain. I had amused myself on the mind numbing trek flipping through satellite radio: comedy sketches, Dr. Laura (annoying woman), opera, alt rock...but during the terror in the Berkshires, I just stuck with Pearl Jam radio..all Eddy Vedder all the time.

But I'm..still..alive..Oh,oh..... I'm still alive..

On the radio just as I seemed to escape death by another hell bent semi.

I debated stopping as I now was with plenty of early commuters sharing the MassPike but I wanted to drive through Boston before the main rush hour.I needed to drive through and under the city (Miss Dig)before turning south on the freeway right before the last exit taking me to Shanna's. Usually this freeway, no matter what time a day is a parking lot but it was strangely empty. I was at Shanna's door 13 hours after leaving..750 miles.

Thursday, February 24, 2011

Yeah I read them and often I find someone I know, more often as I grow older. Yesterday for instance, a father of a classmate of Josh's died of some kind of cancer. I never met the man but I went to his house.
It was on the night of Josh's first high school dance, Homecoming. Since the kids were freshmen and could not drive, a complicated set of carpools were set up, one set of parents to take them to dinner; another to take them to the dance, and one to take them home. They amassed at this house for pictures to be taken. I took a bunch of pictures of Josh and his date, who was beautiful but taller than him, and several parents asked me to take pictures of their kids. Alas, when I came home, I found out I had no film in the camera. This was before digital cameras.
I had met the mom, the woman who became a widow this week, earlier. We were chaperoning a middle school dance and both assigned to guarding a door, not a 2 person job. I took several breaks to peek in the gym where the kids were dancing, an area that I was forbidden to enter by Josh. Kids do not want their parents to see them dance at this age. I told the mom she could take a break and see how her Jessi was doing. Oh no! I promised her I wouldn't come any where near the gym.
OK then. Then she asked me if I'd go check to see who Jessi was dancing with.

I occasionally find some of the people I met in cancer support groups in the obits. Once, right before Naomi was born, I found my old boyfriend.

So does this weather suck or what? A new storm is headed our way. I will leave to Boston in a few hours to escape it. Not looking forward to the drive. I will leave once rush hour is finished. I am all packed.

Today, a nursing student and her supervisor came to check on Maya. This time I made sure I was around. The public health nurse had asked them to come, the one who thought Maya has deficient muscle tone. Well Maya performed all her tricks, crawling a few months before most kids do, cruising, pulling herself up repeatedly and even walked with the nurse holding her hands. They were amazed with her co-ordination and strength. The only thing she refused to do is to lie on the scale to be weighed. She wants to keep moving. In the interview, they asked how much formula she drank. None.I guess they just automatically assume any young mom doesn't nurse, which is kind of insulting. The student will come by herself in the future.

The rest of the day was spent helping Naomi study for a test. No school for her next week, which is why I chose this time to leave. Naomi will be busy though. Her old coach has asked her to help out with his team.

So even though Shanna does have a computer, I might not be posting so often.

Wednesday, February 23, 2011

The current treatment for TNBC is abbreviated as such:
4xAC DD
4xT DD
A=Adriamycin aka doxorubicin aka Red Devil
C=Cytoxan aka cyclophosphamide
T=Taxol aka Paclitaxel Taxotere is sometimes substituted as it is usually more tolerated
DD=dose dense meaning every 2 weeks though sometimes the T is spread out in 12 weekly administrations

Almost always, the Adriamycin regimen is administered before the Taxol (although occasionally at the same time).
Does it matter which order?
A recent meta-analysis says yes. ( a meta-analysis pools many studies together with the advantage of having much more participants. A disadvantage of this is not all the variables are held constant) It turns out that in some places T was given before A. The study looked at the records of 3000 BC patients over a 10 year period in which half were given T then AC and the other half AC then T. Presumably the participants in each group were equal in terms of tumor grade, size, node status, etc..a rather big assumption. Also it must be noted that for my TNBC friends, the results weren't examined or at least reported for successes regarding cancer subtypes.

The authors had no explanation why it would be better. So now that some light has been shed, are oncologists switching the order? It doesn't seem so. I wish I had this study in hand when I visited my oncologist last week to hear her opinion. There is some buzz on the TNBC website with newly diagnosed patients seeing these better numbers marching into their oncologists' offices demanding the better order and getting pushback. Change comes slowly.

As for the side effects on the patients: T and A (love those initials..along with the drug sometimes used: 5-FU)
have different miseries the patient must endure. In general, patients seem to hate A the most though the side effects of T sometimes last for years afterwards (neuropathy being the main one). Adriamycin can cause heart failure and leukemia though at smaller rates than Taxol causes neuropathy.

A record low here in Tundraland..minus 6F though it will warm up almost 40 degrees today. Although I had diligently cleared out the driveway 2 days ago, the plows put up a wall overnight. I thought with some momentum, I could drive through it. Wrong..very wrong. Once I finally was freed, things were clear and I found a flattened down spot outside the Y so I could run around and around.

Tuesday, February 22, 2011

Or do they do it on the Table Periodically..
Or with pipettes
Or in test tubes
Or do they just experiment

Whatever 'do it' means.
A chain of hardware stores claim to be the Do-it place. The kids always thought that was funny.

The title was a bumper sticker that could be purchased at one of the meetings I went to. I wonder how many were sold? I am guessing not many.

I am not one for bumper stickers. The only one I ever had was Finisher of the Dexter-Ann Arbor Race. It was on my car until it died and it could not be transferred to the new car. Even so, it was assumed by most that Steve was the finisher, not me. The Dexter-Ann Arbor race used to be 15 miles long but the first year I did it, they had shortened it to a half-marathon. Instead of running an additional 2 miles in the river valley, the race went up a steep half-mile to finish downtown, a hill anticipated with dread. The day before the race, my running partner and I drove the course though it was well familiar to me as this river valley is a popular place to bike. It seemed like a long, long way to run. My father grew up in Ann Arbor. At one point, he was forced to hike through this river valley as part of a Boy Scout activity. He viewed it as torture and when we were kids, he would drive on this road never failing to mention how awful that day was. The road is 9 miles long. To make the run 13.1 miles, they have you run west of Dexter for a mile and tack on another mile at the end.
So I was able to run it without stopping. Later, when I was training for marathons, I would use this same course as the miles were marked and it was shaded. I would run to Dexter, buy a Gatorade and run back.

Many bumper stickers are political statements. As Steve and I have very different views on politics, we could never agree on a particular statement, not that I would want to subject my car to possible vandalism. Same for religious stickers even the innocuous ones whose message is Why can't we all get along?
For some reason I see the bumper sticker M-22 around town. M-22 is a very pretty road up north but to put it on a bumper sticker?
Another I see occasionally is Ithaca is Gorges.
Ithaca is a town near where I grew up in New York. Other towns nearby had gorges too such as Binghamton and Watkins Glen. They sort of blurred together in my memory. We used to go to a park that one had to walk down the sides of a gorge to access it. It had the same name as my last name so I do remember that correctly. There was a fancy slide with a sign on it that you had to be at least 8 to go go down it. I tried to go down it when I was much younger and I remember some matron, whose job apparently was to keep underaged kids off of it, pulled me off the ladder as I screamed. Once I was 7, I figured I would be big enough to fool the guardian of the slide. I also tried to speak as if I were 8, which I am sure missed the mark. But I finally got to go down that slide. By the time I was 8, I was living in Michigan. A few years ago, Steve, Naomi, and I drove through Ithaca on the way to NYC. It was not a fun drive as Steve was angry at me and giving me the silent treatment..not fun when you are stuck in a car with him. We did go through the gorges, which are pretty and then went to The Moosewood Cafe, which Steve and Naomi hated. I looked for the park with my same last name but could not find it. It turns out that it is in Binghamton. I also remembered Sapsucker Woods, a woodpecker preserve, but thought I subjected Steve to enough revisiting my history.

I hate this snow. Our one car is buried under a mountain of snow. I will go to the Y once Steve returns from work but I know the streets will be impossible to park along.

Sunday, February 20, 2011

The three year olds are sitting in a circle learning today's lesson. One child is not like the rest: instead of sitting cross-legged as the others are doing, she sits between her legs which are folded back to her sides. She is told to sit like the others which she tries to do but soon resorts to her more comfortable position. The teacher calls the mom in dismay and concern. Well that's how her father sits.

A few year later, a pediatrician notices the knock-knees and suggests a orthopedic consult. The mom points out how functional the inherited legs are: the father can do marathons in under 8 minute miles. Besides, she has hauled this child to numerous consults for other conditions. Years later, the girl has a child who also likes to sit in this strange position.

Flash forward to yesterday. Josh, Maya, Naomi and I are on the floor. We wanted to show Josh Maya's unique crawling technique. Lots of swinging arm motions with just a little leg action (where have we seen that motion before?). At one point, Maya rests from all the vigorous arm swinging: she sits between her folded up legs before again trying to reach her quarry (Grandma's toes). Can Josh sit like that? Are you kidding me? No! Josh inherited my relative inflexibility as opposed to Steve's hyperflexibility.

Fortunately the public health nurse hasn't noticed this. The baby seems co-ordinated and strong to me and is doing tricks well before my other kids (excepting maybe Josh who walked before 10 months and was running just a few weeks later).

It is cold outside again. I ran before this ice storm is supposed to hit as tomorrow, the streets will not be good to run on. I look forward to being in Boston in less than a week. It is generally warmer there and I miss the little guys.

Saturday, February 19, 2011

Part of the 96 piece set of bone china from the 1930s that I have had since 1980 but have not used it until last night. Also pink milk glass water goblet and pink crystal wine glasses. The Battenburg lace table cloth looks like it has had some use and it really doesn't match the china but..oh well

Some of the silver, part of a 144 piece set that I retrieved from Montreal this summer on top of Portuguese linen
napkins that were never used. I am not sure whether these were my grandmother's or if my step-grandmother had them

Picture I found the other day of the Mom's camping trip of 1989. Josh is in the forefront in green

My grandmother's favorite color seemed to be this orange-pink. She drove a 1957 Chrysler Imperial of the same color. It had taillights mounted on 3 inch posts, which seemed unique. We inherited this car when she died in 1960. Many of my grandmother's purchases were pink, including the dishes and glassware that I used last night for the Mom's dinner. My grandfather remarried 2 years later a much younger woman whose favorite color was powder blue. Her blue purchases really clashed with my grandmother's pink fixtures. A year ago, my step-grandmother died in Montreal and this summer, I went to retrieve some of my original grandmother's possessions. None of these things are anything that I ever would buy, all very ornate. Everything seems to clash with my home. I have had the glassware on my shelves for years gathering dust. Yesterday I washed all the glass and rid the shelves of 1970s pottery. Still I have too much stuff.

When we have a Mom's dinner, the hostess is responsible for the main course dishes. Someone brings salad; 2 people bring appetizers; another brings dessert (generally me unless it is at my house) and everyone throws in some wine. We end up with plenty of wine. Everything is vegetarian though not vegan. I made a New Year's soup from my survivor class containing black-eyed peas, red lentils and barley. It is a traditional African-American soup. Don'tae approved and took plenty home with him. I also made my easy salmon (a time honored Mom's recipe whose chief advantage is that it takes 5 minutes of prep time-appreciated as I spent most of the day washing things) I also made coconut cashew rice. We had fondue, various dips and crudites, and a yummy fruit tart. Naomi had just got her ring back from resizing from the jewelry store so she came over to show that off and Maya who was passed around. She still doesn't have stranger anxiety.

As usual, lots of wine and laughter and good feelings all around. Naomi stayed for most of the night as she now is a mom too.

A cold front came through. I am waiting for the wind to die down before I go on the 'big run'. I will go out to lunch soon with Josh. Ice storm predicted for tomorrow: yuck! The weather better be clear for me to drive to Boston at the end of the week.

Friday, February 18, 2011

Josh and Shanna from the same year. They do look quite a bit alike here

Naomi when she was about the same age as Maya is now. She did have a lot more hair than Maya does at the same age. Although Naomi has a similar build to the other two, she really does not look like her siblings who are much older. People used to ask if they had the same father but it is the older two that look the most like Steve, especially Shanna

Some refer to the day that everything seemed to change as the dividing day. Generally the division is between the happy and the sad. When I had a miscarriage in 1989, I kept thinking that the days before that were happy and the ones after were sad. But that really was not true as there was plenty of unhappiness before that: Steve's dad was dying and Shanna had to be hospitalized in the months before.

Another dividing day was when our employer got us all together to say that they were pulling out of Ann Arbor. We were sucker punched as it appeared that a lot of new investment was made in our city. But most people felt that the rug was being pulled from under them. In the past, it was very easy to get a job in our field but we all suddenly saw the writing on the wall. Although we did not plan to retire so early, we at least had a generous severance package and we live very frugally so we could survive. And indeed, jobs did pop up, just that they paid only a fraction of what we used to earn. In the months ahead, people worried aloud what will become of them and their families. You could feel their fear. Many are living in reduced circumstances now and the ones that were kept were eventually let go or live in fear that their turn is next. On the list of bad things that have happened, this will be way down on the list but it was a huge change for us.There was some good that came out: I would not have spent half the summer in Italy if it weren't for the 're-training' allowance and it would have been very difficult to work while doing chemo though I know many of my readers didn't have that luxury. Also, work was becoming less and less fun due to the new ownership. Our stress levels, especially Steve's, went way down once we didn't have to deal with numerous useless initiatives.

The day one discovers that one has cancer is a dividing day if there ever was one. It is the end of innocence. Yes I always knew I would die but I never thought I would have to face my mortality so early. As time goes on, I am much less pessimistic about my chances though.

Mom's group here tonight. For years I have had my biological grandma's porcelain dishes and fancy glasses. Recently I received her silverware and linens too. When am I ever going to use them? Answer: tonight.

Thursday, February 17, 2011

At one point, Shanna had to make a diorama of a Native American village. These are the pseudo-birch bark huts of the Ojibway. At the Natural History Museum, they had various Native American dioramas but they are all gone now..not PC

Graham cracker houses for a Girl Scout project. I had these for years before ants got to them

Early attempt to make candy houses

As Naomi is a young mom, she gets regular visits from both a social worker and a public health nurse. She really likes the social worker who feels that Naomi is an excellent mom and that Maya is thriving. It's the nurse though that comes up with things from left field. Yesterday she mentioned that to her it appears that Maya does not have proper muscle tone. This is very surprising to me as Maya can perform various physical feats well before other babies. She is pulling herself to a standing position, she can cruise for short bursts, she can crawl in good form, she can get into a sitting position easily...all of these milestones are at least a month or two earlier than average. She also asked if Maya likes to eat. Naomi says that sometimes it is hard to satisfy Maya as she does like her food so much. Then she got a lecture about how obesity can lead to to diabetes. What!?! Maya is tall and thin...and there are no diabetics in our family. Both of Maya's parents are quite thin.
I will make sure I am at the next visit to question this nurse more closely. At anyrate, the doctor thinks the baby is doing great and that is what counts.

We will have 2 days of spring. I can see patches of grass here for the first time in 2 if not three months.

Wednesday, February 16, 2011

When first faced with a scary diagnosis, the mind quickly goes to unfinished business and goals left unfulfilled.

I can't die because.......

In my case, my number one thought was that Naomi, although 17 and technically near adulthood, needed a lot of mothering before becoming independent. I read many blogs and a common thread among the newly diagnosed with children....

I just want to live to dance at my child's wedding.

Well in my case, I've been asked NOT to dance at my child's wedding based on my dancing at other childrens' weddings. Somehow I missed the opportunity to dance with my son at his wedding though at least some of his buddies asked to dance with me. He did make a point to dance with me at Shanna's wedding. Shanna had an Arab wedding complete with Arab dancing, which seems to involve lots of dancing with ones arms in the air..hard when I still had a good case of frozen shoulder left over from breaking my humerus (not funny) 3 months previous. BTW, the treatment for a broken humerus head is this...suck it up and take some pain meds. No surgery was offered and it is impossible to cast. There is a certain irony in this. But the upshot of it was that I looked especially ridiculous dancing..fueled in part by Arak, the Arab version of Ouzo. There is a video of me dancing with Shanna's mother-in-law. Oh the indignity! Naomi, however, had no arak to cloud her memories. The other kids are well beyond their teenage years in which every silly thing their parents do is seen as some reflection of themselves. I should live so long that I am no longer an embarrassment to my children.

Well I have bigger dreams than to dance at weddings. I want to see all my grandchildren, even the unconceived, grow up.

There are so many places I would like to see. One of them is pictured above. This house and its surrounding gardens and its inside are completely made from intricate mosaics. I actually was in Chartres almost 9 years ago on the way to the Loire Valley to see its huge cathedral. We could see it twenty miles away, very impressive. Inside the cathedral, there is a labyrinth that sinners are to walk on their knees to receive penance. I didn't know about the Picassiette house or I would have certainly gone there.

Again it is slippery out, so much for winter going away. I could wait until this afternoon to run but I need to help Naomi. Also, for whatever reason, I have more energy to run in the morning and it has been a while since I lifted weights.

Tuesday, February 15, 2011

I have two wedding dresses in our closet from a certain daughter's wedding and non-wedding. Shanna, ten years ago, was a size 2...very thin. I was thinking that since Naomi is fairly thin too that, maybe, just maybe, this dress will fit her. She wasn't too excited about the idea but agreed to try it on. There is a 2 inch gap in back where the zipper won't close. Naomi is big boned and must have quite a bit bigger rib cage than Shanna does. Oh well..

Just going to the waiting room brings a lump to my throat and causes my heart to race even though I know not much was going to be uncovered in this visit. I was supposed to go this morning but my mind, clearly on something else, confused two different appointments. I offered to cancel or reschedule but they thought they could squeeze me in. So I ended up waiting over an hour..my fault though.

As predicted, I appear healthy. The seroma I have is 5 cm. By mammogram, it looks like a tumor but by ultrasound, it is part liquid and part solid. She mentionned that someday it might burst and I shouldn't be surprised. After May, I will only see these people twice a year. I am thinking of skipping May.

Naomi came over to discuss the wedding. I am having a hard time getting excited by this.

Monday, February 14, 2011

Happy Valentine's Day to my loyal readers..not that this holiday means a whole lot to me. Some years it just made me sad as whoever was my boyfriend at the time thought the holiday was a crass marketing tool and didn't want any part of it thus no treats for me. Steve, however, usually does get me something and will attempt to make dinner. It will be late though as I will be watching Maya while Naomi is at school and Don'tae is at work.

As for the title, I see no light at the end of the tunnel when my parenting (and grandparenting) will not be needed. Certainly I am committed to the next five years...

And what will happen if the TNBC returns? Tomorrow I go for my every 3 month check-up with the onc. I'm to alternate between the onc and the radiation onc. The woman in my neighborhood who was diagnosed with TNBC the same week I was already only has to go twice a year. Why the difference? She finished treatment before me. At any rate, they only look for local recurrences and ask for symptoms of distal recurrences. No blood tests or scans. Also my insurance (which every year morphs into something even less useful yet costs more) won't cover this. It doesn't kick in until I burn through $3K of out of pocket. I am glad that most of my treatment occurred when I had better insurance. The good news is that I have absolutely no symptoms of distal recurrence. Last year I was very nervous as I seemed to have bone pain that probably was really nerve damage. It seems to be gone...Also good, the longer I go cancer free, the better my odds. Since it has been almost 2.5 years, my chances of doom have halved. At 4.5 years, they will go down to almost nothing. But most of the time, this is way back in my mind as something always moves itself to the front.

The longer days and more sun has activated my solar lights again..small joys. Even though it was 40 deg when I was out today, I somehow almost fell on a patch of ice..ice 9? ( (theoretical ice that has a high melting point). The 40 mph winds didn't bother me as I manged to find a route that made them cross winds.

Sunday, February 13, 2011

The ring. Naomi's fingers look sawed off here, not sure why she is holding her fingers closed.

Naomi is officially engaged though the details of this wedding remain fuzzy, especially when. In a year? She is very young though Don'tae is older than both Steve and I were when we got married. And of course, they do have Maya who will always be a part of both of their lives and they have been together for two years.The ring is being resized. Despite Naomi appearing to be very thin, she is big boned with big knuckles.

Warm (well 35 degrees..all is relative) and sunny today so I ran out into the country. I still can't go on the dirt roads that I prefer as they are icy. But the sun does improve my mood.

Saturday, February 12, 2011

Stuffed baby boar mounted to a sausage vendor's truck at the Molina Sangra we attended. The babies look so cute but if anyone is stupid enough to get close to them, they will squeal and you will have to face an angry sow and her cohorts.

Unlike the European variety which I had my close encounters with, the feral pigs here are crossbreeds between domestic hogs and boar and can weigh up to 1000 lbs vs the 200 lbs that boars usually weigh. A female can have 2 litters of up to 12 babies a year and these babies reach sexual maturity before they are a year old so they can multiply much faster than deer. Some have been spotted near my sons house but as they are nocturnal, sightings are uncommon.

I would wake up as soon as the sun rose to run in the mountains outside of Gagliano. We had seen sounders (groups of females and their babies) race across fields in our early morning bus trips. The cinghiali (boars) spend the night rooting in fields and then retreat at dawn to the forest where they sleep. I didn't see them on my runs until I had been there a few weeks, then I saw them almost every day. Adult males travel by themselves. I was running on the edge of a mountain road when I saw a male walk across the road about 100 feet ahead of me. He did not look at me but I wondered if I were in danger. There was a 2 foot stone guardrail at the edge of the road. Could he jump it? His belly looked low to the ground. After passed, I continued my run to Secinaro (up, up, up....). On the way back, I saw a sounder consisting of 3 adult females and their babies of varying ages cross the road around the same spot.

As soon as I had access to a computer, I looked up boar deaths..not that many: most have occurred in mythology. Years ago I watched the miniseries The Thornbirds in which at least one person is graphically gored to death in the outback by an enormous boar. Recently I looked up boar deaths in Italy: 30 alone this winter including that of a famous jet setting prince last week. But the deaths were not due to the boars themselves, they were hunting accidents in pursuit of the boars. Hunters are allowed to pursue the boars on private land and some people unknowingly get in the crossfire.

I live on the edge of town. Coyotes have been spotted in our neighborhood but not by me. I don't have to run too far to encounter deer and fox.

Our warm period has started but there is a fresh coat of snow making things slippery and the wind is gusting to 35 mph. The snow is all trampled down on the streets making getting stuck again unlikely but the huge snow mountains take up space limiting parking. The Y has lots of classes on Saturday so it is crowded and with these snow mountains, hard to park. I did go there yesterday and did a double workout.

Happy hour with our $2 cosmoses was fun the other night. Josh came over to visit after work yesterday.I feel blessed to have him as a son.His wife had begun a new job last Monday plus she still is a full time student who should get her masters in accounting this summer so she is a busy, busy person. When will she have babies? Josh will give me dates that come and go. Yeah, I know...none of my business and I do have 3 precious ones already.

Friday, February 11, 2011

There is a subset of Jews believed to been descended from Aaron, brother of Moses, 3300 years ago. He in turn was believed to be a descendant of Levi, brother of Joseph. This line was responsible for producing priests and is called the Cohanim, sometimes spelled with a "K". Men from this line have to be extra careful who they marry and can never have contact with a dead body exempting them from mortuary work, being physicians or any other field that might involve dead bodies. They also do not attend funerals. Who is a Cohan in the past was largely self-reported but there is a genetic marker for it. There is a Cohan gene on the Y chromosome so a Cohan father will pass this gene to all his sons. Many Cohans have been tested and the self-reporting seems to be fairly accurate...more than 90% indeed have the gene. Furthermore, this gene has been found in groups who were not generally considered Jewish but at one point probably were such as the Samaritans. Genetic analysis indicate that this gene is about 3300 years old which does coincide with the exodus from Egypt. If one goes to a Jewish cemetery, the Cohan graves are marked with the strange hand sign as seen above from Steve's grandfather's grave. Yes Steve is a Cohan but he married the wrong person to continue the tradition. Still Josh would have the marker on his Y chromosome.

Record low here today (minus 13) but it warmed up quite a bit and next week it will be in the 40s. Could this awful winter be coming to an end? I hope so. This has been a very hard winter for us, the weather being only a part of it but I am hopeful that life will improve. I will see my precious grandsons in a few weeks along with their mother. I am very much looking forward to that.

Thursday, February 10, 2011

One of the strangest fads in food is the embracing of sea salt. Even large hamburger chains are touting it as something 'healthy'. Why would it be healthier? Very trace amounts of minerals? Still it is 99% NaCl.
Yesterday I had my Cooking for Survivorship class, the topic being sweets in honor of Valentine's Day. The menu: black cherry-cranberry crisp with whole grains and that soy stuff thrown in, pita crisps (cut into little hearts)with a bizarre pico de gallo relish made from chopped radishes, hot peppers, green peppers, pineapple, mangoes, tomato and cilantro..not bad but I would never have put those fruits and vegetables together and a carrot ginger soup made with almond milk. I said that the soup needed salt and a jar of sea salt was pushed my way. It appeared to be contaminated with sand and had brown specks throughout.not so nice looking. I wondered what sea this salt came from and read the label...Utah... which does not have a sea unless you call the Great Salt Lake one and no one would want to eat anything from that. The sea in question was underneath Utah millions of years ago, before 'modern day pollutants' and the supplier mines it for our use. Now if you asked me what I thought sea salt was, I would say that the molecules recently had spent sometime dissolved in water..like within the past 10 years (salt does have a long shelf life) not millions of years ago. But today's seas are exposed to hazardous chemicals and this sea existed before that happened so that was the selling point. Hmmm.
Part of the crisp was made from 'vegan' cane sugar. Is there non-vegan cane sugar? Actually I was surprised the word sugar was used. In the same class, it has been referred to as concentrated, natural cane juice.

But I do like the people there and the recipes do taste good. I certainly need to be eating more healthily.So on that note, Happy Hour with the Moms tonight.

Wednesday, February 9, 2011

In the paper today was an article about 'work' spouses and whether one should remember them with a gift on Valentines (probably not). A work spouse is defined as someone at work of the opposite sex that is ones main confidente. Presumably, according to the article, 60% of workers admit to having someone fit this description. One does not have sex with ones work spouse but someone easily could be spending more time per week with a work spouse than an actual spouse.
Over the years, several men could have fit that description for me though I would never have referred to them as such. Especially in the early years, most of my co-workers were men so if I was going to have friends at work, they were going to be men. I am fairly out-going and most of my co-workers, even the most socially awkward ones (and there are plenty of them in science) seemed to feel comfortable with me. As Steve was friends with some of them and worked nearby, I don't think anyone would have ever accused us of doing anything not appropriate. While I was doing triathlons and running races, most of the people I trained with were men. Most of the people I played with in the raquetball league were men also although when I was pregnant with Josh, I dropped down a division and played with women (and won).
Aside from the work buddies, there was a small group of people I would call 'meeting buddies'. Most of the time, these individuals didn't have much to do with me but during meetings, I was suddenly their best friend and every extra moment was to be scheduled with them. This puzzled me initially but after a while I just accepted it.

And none of them ever got me anything for Valentine's Day. I would have to remind them to get something for their real spouses. Most of the men I worked with were quite pragmatic and thought Valentine's Day was a crock.

Cold, cold, cold. I am too afraid of getting stuck around the Y so I ran outside today. Temp was a toasty 5 degrees but at least I found an ice-free path. It will warm up later today but the winds will increase. I rather it be cold and still. I wore gloves for the first time but towards the end, my hands became uncomfortably sweaty. My formula for dressing for the cold is such: Shorts if it is above 45 degrees, one long sleeved T-shirt if it is between 30 and 45, two shirts if it is between 15 and 30. Less than 15 and I bring out a fleece, hat and gloves.

Tuesday, February 8, 2011

Currently there is a shortage of the Red Devil due to increase demand. It is used against many other cancers other than BC. In some cases, other drugs had to be substituted. The jury is still out whether the Red Devil is the best treatment for TNBC, some say cis-Platin but there is a shortage of that too, but it is still considered the standard treatment. What it does is interfere with the replication of fast growing cells by interacting with the DNA, perfect against fast growing tumors such as triple negative BC. Unfortunately it is not specific to interfering with cancer cells, it stops the replication of all fast growing cells such as blood cells, hair cells, inside the digestive system cells...the patient thus ends up bald, full of mouth sores, nauseous, heart burn ridden, anemic, neutropenic ( low white blood count.) Fun times!

Adriamycin (one of the Red Devil's many names) is a natural product. Drug companies used to screen soil samples for both antibiotic and anticancer activity. The Red Devil was found in Italy during the 50s. Chemists are able to synthesize it but it has 5 chiral centers making that a royal pain. They are able to isolate it from fermentation broths of a particular strain of streptomyces bacteria.

What a medicinal chemist does is take a molecule that is active and try to improve on it. This has been tried by many companies including our own. Much of the focus has been on the 3 rings on the left which is thought to contain most of the activity. Also that three ring system is relatively easy to synthesize. You can take off some of those -OH groups, replace them with other groups, etc. You can replace the middle double bonded Os with other entities. (googling me will show early papers with acridine based compounds, all futile attempts to improve upon adriamycin). At any rate, many, many attempts have been made to improve upon the Red Devil but look what they are still using.

It looks so pretty outside but it is so cold. My throat felt a bit scratchy so I am taking a day off from exercising. To be useful, I finally have tackled the coat closet. I have removed all the baseball and soft ball mitts, various athletic footwear of people who no longer live here, coats no one would wear, shoes that no one would wear..For some reason, I find it easier to do these projects while Steve is away at work. For one thing, I can throw certain things away without complaints. Lots of projects left for me to do, of course. It's been a while since all the glassware on display has been washed, too much 1970s style ceramics on display (what was I thinking?). While working, I had very little time to do all this and much of my free time was devoted to following the kids around with their various travel teams. Now I don't have much excuse though the year that I dealt with cancer really, really took a lot out of me.

Monday, February 7, 2011

One of the arguments for not doing mammograms annually for women under 50 is that there would be more false positives than true positives and few women would actually be 'saved' and there would be a lot of needless anxiety. Out in breast cancer blogsphere, there is not much support for this new, controversial recommendation as many there are under 50. Many of their stories start like this: I felt a lump but was told I was too young to have breast cancer. I was told to wait and see. By the time my lump was checked out, it had spread all over the place. The youngest breast cancer blogger I have found is Bridget of MyBigGirl Pants (http://mybiggirlpants.blogspot.com). She discovered that she had Stage 4 BC when she was only 21.

In general, people don't blog about their false alarms. It doesn't make much a blog but here goes...

I have seen both sides of the coin. Since my mother had had breast cancer, I thought I was at increased risk and went for annual mammograms since I was 35 (taking 2 years off for my 2 pregnancies in my late 30s). Around 15 years ago, the company arranged for a mammogram van to give us free mammograms on site. I went again the next year and was asked if I ever had my suspicious lesion checked out. What suspicious lesion? They had sent the results to my primary care doctor but not to me. He meanwhile never looked at it. Why didn't you send it to me? Well we are reviewing our policy....

Suffice it to say I was furious and scared. This thing had a whole year to grow. So I showed up to have it followed up in another health care system. The radiologist said it looked like cancer to her and confirmed with an ultrasound. She said I was 'lucky' as it appeared to be very early on. I was trying to wrap my head around how having cancer was lucky. She arranged for a biopsy to be done in a couple of weeks. Meanwhile I found out my insurance wouldn't cover that particular system and I was told to start over in a new system. I was beside myself with worry and noone was helping me find a new doctor. Finally I called the UM breast cancer center in tears and a very nice woman arranged everything for me. Still a full 2 months had passed on top of the year....I couldn't sleep at night, I was so scared. I think this whole business was more upsetting than when much later on when I really had cancer. On the day of the biopsy, they insisted on taking their own films, over and over again. Finally I met with the surgeon. She told me that in her opinion, I had nothing worth biopsying. She had obtained my old films and she said the lesion was there too. It hadn't changed in a very long time so it probably was NOT cancer. Still to be sure, I was to come in every 3 months, then 6 months to make sure it stayed the same. At one point I was weaned to just once a year but then a radiologist said it looked too scary to ignore to her and I was back getting mammograms every 6 months. Towards the end, I had skipped a few. When I finally got a mammogram in 9-08, it had been almost 18 months since the last. But this new growth was no where near the suspicious spot!
In my second surgery, they decided to remove the original suspicious spot. It was benign. Since my tumor grew so fast, if I had gotten my mammogram back in May like I was supposed to, it probably would not have been there but I guess I will never know.

Yeah it is true that many cancers are missed in young breasts. They need a new screening technique. But until then, it seems that many cancers are detected in those under 50 with the mammograms. They are more likely to have the fast growing type: waiting every 2 years could kill them.

It is the last 'warm' day for awhile so I ran in the slush. I so want February to be over..

Sunday, February 6, 2011

One of my recent middle of the night readings was The Glass Castle by Jeannette Walls. It is thought by some to be the American 'Tis. It is a true story of a resilient young girl raised by psychotic parents in abject poverty. The family is always on the run from collection agencies, the police, social service workers..you name it. Some of their time is spent camped out in the desert. The kids forage for food in dumpsters. They eventually settle down in a small coal town in West Virginia full of poverty. They have no heat or running water. Any money that is earned is quickly consumed by gambling or alcohol. Even though the parents are clueless on how to be parents, the author holds them no grudges. The parents mean well and are quite bright as are the children. The children take care of each other. Even though the author was raised in harrowing conditions, she is now successful and happy.

Why do kids turn out the way they do? Many of my friends have had childhoods that could be made into Oprah books yet by most measures, they have been transformed (mainly through self-determination) into successful adults. And it goes the other way..a childhood full of privilege leading to a very unhappy adult who is constantly blaming the parents for not being better parents somehow while still being dependent on them even after the parents' deaths.

My childhood was definitely not a happy one but it did make me self sufficient.Even though there was no alcohol abuse and poverty, our family would be considered dysfunctional. I won't whine here about details. Fortunately there were some bright spots growing up and I could see the light at the end of the tunnel: I knew I wouldn't be at home forever. But I did make a vow that my children would not have to deal with the issues that I had to.

Yuck! More snow. We ended up with almost as much snow as the so called blizzard produced with very little warning. I will give the city some time to plow, if they ever get around to it, before going out. Meanwhile I will meet Josh for lunch.

Saturday, February 5, 2011

Southfield #10 was the name of the school I attended 3rd through 6th grades. I was always puzzled by the name; all of the other schools had regular names and it wasn't that this was the tenth school built, it probably was the first school in the township. It was near Ten Mile Road and very old and ugly. By the time I had gone off to college,the building somehow was converted to condos so only a small amount of the brick facing showed with its bizarre name engraved in was left. Steve went to NYC public schools. I guess there were too many elementary schools to name. He went to PS 100 for example but they did name the high schools. His neighborhood school would have been Lincoln High but he went to a magnet school downtown for high ability boys in math and science: Brooklyn Tech. He graduated when he was 16.

Most of the students including myself were from the shiny, new subdivisions that were built up around the school but they bussed in some low income students from some trailer park 3 miles away. One of these kids I will call Timmy, not his real name. I think he was in my fourth or fifth grade class. I don't remember him ever speaking but I clearly remember what he looked like: small, thin, longish hair (when all the boys had buzz cuts with a bit of longer hair on the top of their heads). He had big brown eyes and was cute. He only had one outfit, a short-sleeved white shirt, which seemed to be always clean, and some black pants. He had no coat. We were expected to go outside for recess, no excuses not to. Just because he had no coat was no excuse for Timmy. I remember seeing him shivering in his short sleeved shirt in a corner near the building. I couldn't believe that he was expected to go outside. Didn't our teacher ever notice? The only bit of compassion he ever seemed to get was the day a skunk sprayed him as he was waiting for the bus. He had no other clothes to change into. The prinicipal came into our classroom to explain the situation and said none of us better make fun of him.

I got stuck in a snow drift the other day while trying to get out of a parking spot near the Y. It has been years since this has happened. Fortunately through the kindness of strangers... Until this snow melts or the city gets around to clearing it, I've been hesitant to go back. I ran outside today before we got any more snow. It was a toasty 12 degrees out though fortunately calm. There was a glazing of ice on my street but once I got out to the 'big' road, it was clear and it felt good to breathe in clean air.

I spent the day and alot of the evening with Naomi and Ms. Maya yesterday. Maya seems to enjoy new environments. We had her in a high chair at a restaurant and she happily gurgled while we ate. She is close to crawling now. She creeps mainly but for small bursts, can push herself off in good crawling form.

Friday, February 4, 2011

Thursday, February 3, 2011

Above are the first set of babies from the Mom's group. They are about a year old here and will turn 32 years this summer. Can you believe it? Shanna, the only girl, is in back sucking on a bottle. It is probably empty. She liked to walk around with the bottle holding the nipple with her teeth. Occasionally she'd bite the nipple off and there would be a mess.

One of the moms quit the group about 7 years later though I see her out and about occasionally.

These babies have scattered to the winds. Only one of them is still in state, though I think the quitting mom's son is here too. There seems to be no correlation between birth weight and adult weight in this group. Shanna was the biggest baby of these 6 but she probably weighs the least (though she is female). She went from being in the 95+%tile as a 9 month baby to being 10%tile for weight as a ten year old.

Thursdays are the big study day for Naomi. Hopefully I can find a place to park today around the Y after our big snow.

Wednesday, February 2, 2011

York from ramparts..above York Devil above that, a stained glass window from Canterbury

Salisbury stream

Salisbury

Salisbury cathedral

Inside Harrod's

Big Ben

Chipping Camden

Canterbury stream across for our hotel

Cotswold cottage

begonias in Bath

Sometimes Blogger makes me want to tear my hair out as it just erased all what I wrote.

My former employer yesterday announced that it would close its English site where 2400 employees work. Much of the area around it is dependent on this site. Welcome to Michigan. Many of my former colleagues were transferred there when our site closed in 2007 although they seemed to be the first to go during various downsizings. Steve was assigned there for 3 weeks in the summer of 2007. I went to join him for his last week of working and then we toured the country. See above pictures. In my last few entries in my other blog (Sue in Italia: see my profile) I wrote about this trip.

La neve: The snowstorm was downgraded to a 'winter storm' from a blizzard. In the middle of the night, the snow turned into icy sleet, more dense so the overall snowfall isn't that impressive. I see 7 inches on my picnic table and some of that was there before. My usually busy street in back of our house has few cars on it though I saw a cross country skier on the bike path. Many places are closed with the notable exception being UM. They almost never close. Today our 'paper' listed the biggest snowstorms of the past 120 years. The biggest occurred during the Sunday of Thanksgiving break when I was a senior at UM and had a test scheduled that Monday. Like many students, I was away from Ann Arbor. Flights were cancelled and there was more than 2 feet in the suburbs. We were afraid that UM would expect us to be at class on Monday and the snow would be no excuse. My then boyfriend's father drove 10 miles out of his way to pick me up to drive the 3 hours to Ann Arbor (usually a 40 minute trip..we didn't have the same X-pressways then). Well they cancelled then and maybe they did again in Jan 1978 when we had another big snow and had just moved into our new house. We couldn't leave for 2 days.

Steve and me

40th anniversary trip to Spain

About me

I am a mother of 3, wife of 1, and grandmother of 6. For years, I had been a medicinal chemist. Not long after I was retired early, I found myself with triple negative breast cancer. My struggles with it are in this blog along with the joys and trials of being a mother and grandmother. I love to be physically active, travel, read, and garden. Although my degrees are in chemistry and cellular biology not medicine, I keep up with the medical literature and report herein watching closely for good news against this deadly disease. As time goes on, my stay in Cancerland has become more a bad memory than a reality. This blog has since morphed into a photo blog in which I try to capture moments of beauty in my life.