Wednesday, November 30, 2011

Tried in the court of public opinion

Yesterday the yellow rag that passes for our newspaper reported that a respected pediatrician was accused of window peeping observing a 12 year old girl in his neighborhood undress. He presumably was observed doing this 4 times. The reader was left with the impression that this man has his nose pressed to the window. If the observer indeed seen this, why weren't the parents warned of their daughter's undressing habits? Why was this observed 4 times without some sort of intervention? This man has access to undressed children all the time, why would he need to look at more bodies?
Public outcry was swift. Although there were a few voices of reason (not guilty until proven so) and support for such a caring, professional man, most wanted this man burnt at a stake. He was forced to take a leave of absence and spent a night in jail. His personal computer was seized. Some wondered about this alleged change of behavior. Early Alzheimer's perhaps? An OB years ago (my OB's partner) was accused of suddenly groping patients and acting 'improper' was found to have Alzheimer's.

Today it was reported that according to the defense lawyer, the alleged window peeping occurred from the windows of the accused house. The reporter of the peeping was one of the parents of the 'victim'. So the parent was aware that the daughter undressed in front of a window and then just looked though another window to see if anyone watched this? Who is the criminal here? How do they know what the pediatrician was looking at?

We now have snow on the ground. I fretted that Naomi would be driving in it in the middle of the night as it fell. I don't want to wake her up just to see how that went but I assume Maya will wake her up soon enough. I am waiting for the sun to melt the snow on the streets enough for me to run. I am antsy.

Maya's speech therapy was yesterday. It was decided to have some of the sessions at Naomi's to minimize distractions. Still few words from Maya's lips but she is learning sign language. She is imitating more and more. She showed off her soccer skills dribbling the ball back and forth in the apartment. The therapist thought she was better at that than some on her 5 year old's soccer team. But Maya's gross motor skills are not in question.

Tuesday, November 29, 2011

The Rocking Horse Winner

From the web:
I have always been a reader. Bits of stories and plays stick with me. I was watching a House rerun the other day and the character used one of the phrases that had stuck in my mind from my readings as a teenager: bumping uglies. This was from an Albee play (Who's Afraid of Virginia Woolf?). At the time, I tried to drop it in any conversation I could.

Call me Ishmael... (Moby Dick)

He could always hear the cry of the pilgrims (Lord Jim)

"Mistah Kurtz! He dead!" (A Heart of Darkness)

There was a constant whisper in the house "There must be more money!" (The Rocking Horse Winner)

I could relate to that. Only the constant whisperings were literally screams and loudly vocallized anxieties on 'who's going to pay for that!" in my house. In the short story, a young boy tries to buy his mother's love by providing money for her. He has the ability to predict race horse winners by rocking hard on his hobby horse. The bigger the stakes; the harder he has to rock. Although his mother is thrilled with this influx of money, it is never, never enough and he has to rock harder and harder. It ends badly.

Years later when living in the same house as an English major, I had told her that I had read that story in eighth grade in my 'special' English class (I had been identified as a high ability reader, not much an honor given the number of low performing greaser queens in our school). She was amazed, not that it was a difficult read, but because to her the story was full of sexual overtones. It was written by D. H. Lawrence after all.
You know there was no actual rocking horse.
She was apparently taught that the race horse winners came to the boy in his masturbation bouts. I don't know what young boys think of during this activity but I suspect it is not racing odds.At any rate, my earnest young teacher had been trying to stay away from anything controversial. He had made the mistake of requesting parental permission so that we could read Flowers for Algernon, which involved some extramarital sex. A mom wrote back that she would not expose her daughter to 'such filth'. I knew which mom had written that. A mom who couldn't afford to send her daughter to Catholic schools. I am not sure if the teacher shared the specific name but I knew it somehow. We read instead, without permission in advance, 1984, which to me, had just as much sex in it ( I of course got a copy of the first book).

Another image that stuck with me was on the last page of The Grapes of Wrath. The Joads' teenage daughter had just delivered a stillborn baby that had died of starvation in utero. They encounter a boy and his starving grandfather. The boy says If only he could have some milk....
The last scene: the teenage girl/young woman is nursing (literally!!!!) the old man back to  health with a smile on her face.
Teenage Sue's reaction: Ewwwww!
Old Sue's reaction: Um..first of all, death in utero of starvation is real rare. Second of all, the amount of milk coming in the day of a birth even in a well nourished mother, would not amount to more than a few teaspoons of sugar water and a few immunoproteins. Third of all: Ewwwww!

Shanna et al are safely back in MA. We have a 'winter advisary' and a 'flood advisary' on the table now. Yuck! Non-stop rain, strong winds, dropping temperatures. When to run? I wore a hat, which kept my head warm but I was sopping wet otherwise. A few more degrees lower and it will be snow. I do hate winter. I wasn't out there very long.



Monday, November 28, 2011

Heart of Darkness

Again our neighborhood was subjected to an almost 24 hour blackout. Very annoying and inconvenient in so many ways. We had Shanna's family over for their last night in Michigan.. Fortunately we had dinner early so I didn't have to cook in the dark with no electricity. Shanna had just finished the wash but not the drying (had to take it all over to Naomi's). It was cold and dark in our house. Naomi had brought over all of Maya's outgrown things, which Shanna had to sort and pack by flashlight. We took the kids to run around in a McDonalds as it is hard to entertain preschoolers in the dark. They left before 6 this morning trying to organize all by flashlight. The hand-powered flashlight that one of the moms gave me for X-mas a few years back is certainly getting a workout this year.
Naomi started a temp job just for the holidays last night and had her last class and tests today. She needs to take a state test in a few weeks and then hopefully she is employable. She's gotten As on her tests. Usually I have Maya on Mondays but she would have turned into an icicle here. Naomi returns to work all night soon. I suspect she will be really dragging sometime in the middle of the night. Perhaps she'll develop a taste for coffee, which her company specializes in and has some available at all times.
It had rained most of the day yesterday, another big problem as we are dependent on that sump pump. Steve got the generator going to empty it out a few times. Others on the street were not so lucky. After coffee in the local coffee shop (I really needed to warm up), I ran around the neighborhood looking for answers and found a snarl of DTE trucks. A large tree had fallen on some wires (no wind yesterday) causing a pole to burn. They were having a hard time getting the pole in place. The utility man blamed our huge trees for all these outages.
I returned this evening to lights and heat. What luxury!

Sunday, November 27, 2011

Birthing dreams

I dreamt the other night I was giving birth before a crowd. I am not sure who was in this crowd but I felt compelled to entertain them. Alas, nothing was happening contractionwise. I asked the nurse to check me and she pulled a baby out. The boy had a 10 year old's face and a full head of blond hair. It wasn't even wet. I immediately named him Charlie and felt bad that the birth wasn't more of a show.

Why do I dream such weird things? Maybe I am identifying with Shanna though I am sure she wouldn't want a crowd watching her. Another of Maya's many cousins was born about a month ago (Don'tae has 8 siblings). This birth was a well attended event. Naomi's job was to position her smart phone close to the business end to record this baby boy's birth, which she did.

Having the family all show up for a birth must be a tradition in Don'tae's family. Some showed up during Maya's birth, which I found distracting. When we had moved the labor operation into the tub room, they seemed to disappear.

While I was in labor with Shanna, a friend showed up and constantly questioned the nurses. She was not allowed in the delivery room, thankfully. Every stupid thing I said while in labor she would repeat for years to come. I was not amused. She never has given birth so I was not able to return the favor.

Shanna was in the room when I gave birth to Naomi. She was almost 12 and fairly mature. I more or less 'suffer in silence' so I didn't think I would scare her from ever having babies (as she is carrying her third, that worked out). Still every birth is different and I reserved the right to send her away if I could not control myself. I needed to be induced as my waters had broken 2 days before. I went from no labor to end stage labor just like that so it was rough. The plus side was that Naomi was born within 2 hours. The negative was that I worried that the quick birth affected her somehow though usually oxygen deprivation results in motor difficulties and she was a great athlete.

And why would I name a baby Charlie? Lately I have been doing genealogy searches. My great-grandfather Charles named his third son, my grandfather, after himself. My grandfather refused to use the name as an adult and went by his middle name Howard. To my 1960s ears, Charles seemed like a better name than Howard. I had asked him once why he changed his name. He said he hated the name Charles. Was this a form of rebellion? My grandfather had plenty of nice things to say about his mother but was silent about his father. He didn't believe in speaking ill of anyone. My grandmother also chose to go by her middle name though this did not seem to need an explanation. Her birth name was Sappho Cecelia. Her mother had a college degree (rare in the 1800s) so she must have known the details about Sappho. My grandmother was not too excited about the name Cecelia either. When it was proposed that I be named after her, she nixed that idea right away saying she didn't like the name.

Our nice weather is gone. I had run 5 days in a row so I am taking a break. Shanna's family comes to dinner later today and then she will leave. I feel that I haven't spent much time with her but she has many competing claims on her time so I should just grow up and not pout.

Another side activity we have been engaged in is making photobooks. I have been purchasing these at discounts from Living Social and its ilk.I made a very nice one  of Naomi's wedding and Naomi made one too. Even Steve has gotten into the action. His brother has never been one to keep photos or anything for that matter. His wife has wanted pictures of his childhood. Steve made one of his brother's life from birth to Naomi's recent wedding in which there were plenty of  shots of him dancing. Steve mailed it in time for his brother's birthday, which is today. His brother seemed genuinely touched by the book. 

Saturday, November 26, 2011

Houses


I love being able to look inside houses just sitting here at the computer. The top house is one in Ann Arbor that my grandfather had built when he moved here in 1927 to begin med school at the ripe old age of 37. According to the 1930 census, the house was worth 11,500K. A house next door of similar quality and size rented for $75/month. It is currently on the market for $535K. overpriced, but the neighborhood is considered very desirable. I never was inside the house but now I can view each room.
The bottom house, image reversed, is the house my grandfather had built just outside of town once he was a successful doctor, in 1938. He handbuilt the terraces, now gone as they were a pain to mow (he had a manual lawn mower suspended with ropes). It has been remodeled several times. I  would love to look inside it. It was huge with hidden closets. My grandfather sold it in 1968 as it was too big for just two people.

I also would like to look inside the house I grew up in in Corning, NY. It was built in 1950 for $17,500. They had to sell it for a loss in 1961 as the town was shrinking. According to Zillow, it is worth $100K now. A house nearby for sale is that of my best friend's grandmother. I had been in that house hundreds of times. I now can stroll virtually through the empty rooms nearly 50 years later. Some of it looks familiar.

It is a sunny, relatively warm Saturday afternoon. I was able to run in shorts trying to make up for the beginning of the week in which I was too sick to move.
I had been looking forward to another Shanna night. I had even made her favorite dessert. But it is not going to happen. Oliver is sick and only she can comfort him.
I am sad.

Thursday, November 24, 2011

Thanksgiving

A 7 year old's essay. From Passive/aggressive
A bad joke: How do you call a running nun?
On Virgin Mobile
Or maybe it is what do you call a running nun? Same answer.

I did spot my running nun again out in the boonies still dressed in her habit. So I am thankful that today I can resume my longer run without it feeling like a major ordeal. I am thankful I can run at all however slowly. I am thankful that cancer did not return to me or to others in my family. I am thankful for my family, especially the grandchildren. I am thankful for my friends.

Julia cooked Thanksgiving dinner this year. Shanna's family and Naomi's family fit the dinner in between several on their husbands' sides. The boys had fun throwing the ball to Sunny. Maya had fun chasing the boys. Good food..everyone got along. Not sure when we all will be together again.

There is a 2 mile stretch of road near Josh's house: Deer Alley. Although deer/car collisions are down in Michigan this year, not in Scio Township. It is mating season. Not that deer generally look both ways before crossing a road but with them chasing each other, they are more likely to cross. Josh hit one last week. We took another road back as it was the deers 'active time. They are crepuscular.
video



Wednesday, November 23, 2011

Name that baby!

Naming little girls is especially fun. The  little girl currently under development had a name even before she was conceived. I like the name but alas, not everyone is in total agreement here. IMHO, the mom's opinion should count way more. Unfair you say? Who is carrying the child and will be responsible for most of her care?
No one is asking me as I have been told almost daily how much I suck at naming babies particularly my first born. But as I am a meddler, I have been consulting name lists and suggesting back-ups. One of the requirements is that the little girl has a Top 100 name.  Shanna, short for Shoshanna, did not appreciate her relatively unique name. When she named Oliver, I was surprised as it was not on the Top 100 names in the US (it is now!). She said it was  one of the top 5 names in England and Australia. So we are not confining our list to that of the US. Here before me I have the top 50 girl names in England. The top 10 are very similar to that in the US. Isabella seems to popular everywhere now. Her chosen name is much more popular in England than here. Names on the English list that don't seem to be used here: Ruby, Freya, Isla, Poppy, Daisy, Imogen, and Matilda. I never even heard of the name 'Freya'. I assume it must be some character on British TV.

How the popularity of names, especially girl's names, change! From my name alone, one could guess my age within 5 years. My classes were full of Pattys, Sues. Debbies, Barbs, Nancys, Kathys, and Marys. None of these names seems to be used anymore. At Shanna's school, there were many Katies; three in my GS troop alone. Emily seemed to be the top pick for little girls Josh's age though that name still seems popular.

I think we need the services of Dr. House here to identify our mystery illness claiming first Naomi, then me, and now Steve. Symptoms: Chills, fatigue, crabbiness (especially in Naomi), stomach pain (not gut pain), very acid stomach, nausea with vomiting,headache,anorexia,  no sneezing, coughing, or runny nose. Weird symptom that developed in Naomi yesterday just as she thought she was over with it: a rash creeping up her body before her eyes, swollen fingers and numbness. The rash itched. The doctor on call did not seem alarmed and told her to take an antihistamine for the itching. The rash is now gone but not the numbness and swelling. I'll have to wait to see if I get the rash too as I am 2 days behind Naomi. I do feel better except for a mild headache and queasiness. Running is still hard but it was so nice out today, I felt that I would be wasting good weather if I just stayed inside.

I got to have my alone time with Shanna yesterday and today. Loved it. I might get another night in a few days.

Tuesday, November 22, 2011

The Sign of the Hamburger

This shot is taken from on top of the butt. Directly to the right of the word GIRL are the three lines that signify girl though they are not as clear as seen on some ultrasounds though much clearer than Maya's

The ultrasounds were taken at 20 weeks gestation. These pictures always look scary to me. Other pictures show arms and legs so Shanna Junior is not just a head and torso.


I was finally able to run just a little this morning although my belly still feels sore. It is no longer my turn to host the family as they will spend time at Ramy's mother who lives about 5 miles from here. I will have some alone time with Shanna, which I am looking forward to.



Ms. Maya styling in her coat and boots. She isn't allowed to have that pacifer under my watch

Monday, November 21, 2011

Statistics and Associations


Try to figure THAT out  above!

Or my favorite statistic..

Nearly half of Americans are torsos.


When I first was diagnosed with BC, I tried to read every study I could concerning its treatment. A headline would denote that a certain drug extended life 'significantly' and then I would read that survival was 6 months vs 4 months for the controls. Statistically significant but to me, not much help. Many studies I read contradict each other. First hormone replacement did not cause breast cancer, then it did for everyone, and then it did only for those over 60. Most of the studies on TNBC suffer from too small of a sample.

And then there is the problem with cause and effect.

There are studies showing that breast fed babies have higher IQs. But are they higher due to the breast feeding or the types of people most likely to breast feed?

The night of my first high school parent orientation, we were told to encourage our students to play sports as athletes had better GPAs.. But if they had poor grades, they would be kicked off the team.

I am not sure what to think about denying Avastin to metastastic BC patients. It works wonders in a small number of 'super responders'.. But it does not work for many other patients. Finally the company is getting around to figuring out exactly how to identify a super responder in advance. VEGF levels? Or something else..

Today was the morning of babies as Naomi was gone and I had Maya for the day.
At one point, we had a 3 year old, a 2 yr old, a 1 year old ,and a 4 month old. Then we have the 4 months to appearance growing in Shanna. The 4 month old was the son of a high school friend of Shanna's, an OB. It was interesting hearing how a doctor responds to being a patient. The little baby weighs just slightly less than Maya despite being a year younger. He has a perfectly round Buddha face.

I feel better finally but still can't eat much without feeling like throwing up. I've been sticking to bland.

Yesterday I still had to cook for everyone but no homemade dessert or salad. These were store bought. I did like having everyone in one place. Thanksgiving will be at Josh's. I give thanks for that!

Sunday, November 20, 2011

Splendor in the Grass and Angry pencils

What though the radiance which was once so bright

Be now for ever taken from my sight,

    Though nothing can bring back the hour

Of splendour in the grass, of glory in the flower;
WORDSWORTH
from  Intimations of Mortality

Shanna and I watched this last night. For its time, it was a breakthrough movie showing the angst of adolescence, a welcome change from the Beach Bingo films slightly later on. Basically 18 year olds played by Natalie Wood and Warren Beatty have this all-consuming hots for each other. They so much want to have sex but only bad girls  would agree to have sex. This is told to them over and over. She asks her neurotic mother if she herself ever desired her father. No, never...sex is just a chore and  you better not give in or you will lose him and your reputation. Now this didn't quite ring true. Not that one would deny ones sexuality but who would ask their mother, especially in 1928, what sexual desires they felt? Who would dare admit to their mother that they want sex? Not me, that's for sure. Not my daughters. Meanwhile, the Warren character falling in love interferes with his father's vision for him. The girl has to go and Natalie is dumped. This leads to a nervous breakdown evidenced by Natalie throwing herself in a steaming bath tub. If this bath water was so hot, why isn't her skin red and why doesn't her mom get her out of there? Then we noticed the water only was steaming in part of the tub..we could see the tell-tale chunks of dry ice providing the steam.

The title is of course from the Wordsworth poem they are studying in class, a class that no one is actually paying attention to anything aside from their own hormones. The Natalie character wiles away her time writing her beloved's name over and over. During the time she is having her nervous breakdown, she is able to correctly interpret its meaning as she is living through it. Her happiness will be just a distant memory.

Interesting. I could not pronounce the title of the poem. I thought it was Imitations...

Whatever crud Naomi had, I have now. I spent last night shivering despite all my blankets and throwing up. I can't ever imagine eating again.The last thing I ate and I will never have this again, is penne arrabbiata, literally angry pencils. Meanwhile I agreed to cook for our ever increasing family tonight..
I am so tired and feel so bad. I never even threw up on the Red Devil though I was in a constant state of queasiness.

Saturday, November 19, 2011

Cancer the crab

Cancer the crab creeps in all directions. Benign growths usually have smooth edges but cancerous growths are jagged, some appear to have tentacles. It is probably just as well that I didn't see my mammogram last year. The growth, or mass as the radiologist put it, was more than 5 cm across; if it were cancerous, my prognosis would not be good. But its edges are smooth; its insides are liquid; it looks identical to what it looked like last year.
One of my dear readers has skin mets from breast cancer. Bright red lesions creep across her chest choking off blood vessels and lymph passages below the surface. She posts pictures of it. It now covers almost half of her chest. Due to little circulation, there are patches of necrosis. Secondary infections are smelly. Systemic treatment would do little good due to poor circulation. Radiation might slow it down but be painful. at first, it was thought to be radiation necrosis.

In my cooking class the other day, of us 6 BC survivors, 4 of us  are TNBC although one of those was never tested for the her2 oncogene. One of the women just started chemo, still in shock about her diagnosis made right before her wedding. Some people are supporters of cancer patients, their spouse or their child. One woman's experience has been so draining, she wonders what is worse? Being the patient or being the cheerleader. Her husband has no more signs of cancer but there has been so much treatment induced damage that he is finding it difficult to want to live.

Another supporter never has had cancer before but has had 58 pounds of benign ovarian tumors removed. 58 pounds!!!

 I did not enjoy my visit this week to the Cancer Center. My onc thought I needed a flu shot which was administered in the infusion room. I never wanted to see that place again. In the lobby  a sextet of sweet voiced Mennonite women sing. I assume they are not Amish because their modest dresses have small flowers printed on them whereas Amish always wear black. And my aerobic nun that I encountered in the middle of the wilderness was all in white.

A few days later, I was back again on the deserted road. A man on a bike stops in front of me. I wonder if I am in some kind of danger. He isn't wearing the usual bicycle apparel and is shabbily dressed. He leaves the bike  in the weeds and walks into my path carrying...a cross-bow! I guess he is a hunter and it is deer season. It will be tough carrying a deer back on a bike. He is not in orange. Maybe he is after birds.

The small town my son lives in features a 'deer pole' near its town square. There are 12 deer hanging off of it now, a gruesome sight. For some reason, Japanese dignitaries were in town. They were fascinated with this spectacle.

But my cancer week is over. Shanna and her family came yesterday. It was fun having the grandbabies all in one place. Currently they are visiting the other side but this week is what I live for.

For those of you who wonder what a deer pole is, I've posted a photo from our local paper. You have to scroll down for it. As it is disturbing...










Friday, November 18, 2011

Maya's first art work


Maya is so delighted to make marks with the crayons though she doesn't limit these to paper.

Shanna's family is slowly inching across Canada as I write. I think they escaped most of the snow.The trip is very long as it is but with two antsy boys plus a little girl in utero, it can't be that much fun. The boys do get to watch movies as they sit. I've been trying to get the house ready for them but Naomi is sick so I have been doing Maya duty.  I have been finally relieved by Steve and we are hoping for a nap soon.

Wednesday, November 16, 2011

The Dead Bosses Society

A disproportionate number of my bosses died before their time. New bosses of mine were warned  of what bad luck it is to be my boss. I did not wish these men dead: I was actually quite fond of them and wished them well. My worst boss ever is still alive; an evil bitter woman who was profoundly depressed and committed to take those down under her control. I remain friends with most of my former bosses. A few more may not be among the living but three died either while my boss or shortly thereafter.

Boss one: Age 55. Gunned down by a 19 year old prostitute at the order of her pimp. As I had alerted the police to her possible involvement, I was afraid I would be her next victim. She still is in prison; her pimp was sentenced to 'involuntary manslaughter' and probably was quickly out.

Boss two: Age 42. Drowned while trying to save his 7 year old son caught in a riptide. The son was saved by is 11 year old sister. A nine year old sister watched the tragedy unfold from the shore.

Boss three:  Age 74. Died of a BENIGN brain tumor. Aside from the brain tumor, he was a very healthy, engaged person  destined to live the 100 years his father did. His mother did not fare so well; she died shortly after giving birth to him due to a blood clot that formed while she was just laying around as the custom in those days.

I have discussed the first two bosses on other occasions. Boss three was a man two years older than my father and in his spare time was a photographer with quite the  artistic reputation. His work was shown in galleries around the country. He also usually had a booth in the juried section of the Art Fair though his best seller was a ciba chrome print of the law quad that law alumni seemed to like. As my father was a photographer too with a completely different focus ( commercial photos ultimately purchased by ad agencies and puzzle manufacturers), their paths would cross occasionally. My father would dismissively refer to my boss's ilk as 'artsy-fartsy'. My boss was amused by my father's pink hair (once red, it faded to pink) and not so amused by my father peddling his photographic inventions. They knew some of the same people including this creepy friend of my father's who I was fairly sure would give me obscene phone calls when I was only 10. I asked my boss if from what he knew of that man, would that be consistent? Yes it was. The boss lived on the very same street my father grew up on (until my grandfather moved them to the mansion just outside of town). The boss had many interests and opinions. One thing that he didn't find particularly interesting was our job and he failed to keep up. But we had lots of interesting conversations and we were fond of each other.
 Shortly after our company made him an offer he couldn't refuse, he developed olfactory hallucinations. He specifically smelled acrylates. Once he figured out that was impossible, he went in to see if he had a brain tumor. Although they didn't find it in the specific lobe responsible for smelling, they found  a tumor in another lobe not causing any symptoms. It was considered benign. Here is where common usage and medical usage part. To most people, benign means harmless. But a benign brain tumor is one that grows slowly, does not cause inflammation and it does not spread to other parts of the brain or the body. For a couple of years, it did not grow nor cause symptoms. But then it started to grow. They tried to remove it causing 'collateral damage'. Now that they have 'cyber knife' I wonder if that would have cured him.  The parts that were left, continued to grow and ultimately killed him.

But to his knowledge, he had this thing more than 10 years versus a glioblastoma that kills almost everyone in less than two years so I guess that makes his 'benign'. My friend managed to live a record three years with a glioblastoma but it was not a good three years. Yesterday I read that a herpes virus has been selectively modified to kill glioblastoma cells in mice. As these patients have next to nothing to help them, hopefully this will pan out to use in humans.

A good portion of the last two days was taken up with Maya watching so I was not able to run, which made me antsy. I was out there today trying to make up. Aside from Maya's lack of speech, she also was found lacking in fine motor skills. I have been trying to concentrate on that. She is fascinated by people writing and wants to do it too. Alas, she tries to hold a pen sideways. Finally we got her some giant crayons and she was able to make marks on the paper while squealing in delight.

Tomorrow, my grandsons and their parents will make the long trip here.

Tuesday, November 15, 2011

The last woman sitting

Today was a day I dreaded for months, my mammogram and follow up. For one thing, my bad insurance will not cover any of it. Screening mammograms yes; diagnostic ones no. If you have a medical condition, nothing will be paid until you reach a high deductable so every repeat scan costs me several hundred a pop. Yes I better hold still. Last year's scan revealed that I have a large seroma around the area of my incision that looks identical on the mammogram to a tumor, a large white spot. But by ultrasound, it is not a tumor. As long as this thing exists, all my mammograms will be the expensive diagnostic one with plenty of repeats. This time I begged the technician to let me look at this year's scan versus last year's; they looked identical so that's good. But still I had to wait and wait with everyone leaving before me despite coming after me to get that all clear. I took my pulse: near 90. Later, after I got the all clear, it was down to 60. I could hear my heart pounding and felt sick. As time goes on, I am at less of a risk for a recurrence but lightning can strike twice. So finally I was given the all clear without any additional scans or the ultrasound. I then saw my onc, nothing to report there. I did talk her into having one of my follow-ups be replaced by my primary (free to me).

Monday, November 14, 2011

Allegiance

Rooting through some of the historical papers of my family, I came across a couple of Declarations of Intentions of one of my great-grandfathers and his brother to become a US citizen 'renouncing forever all allegiance and fidelity to all foreign princes particularly Wilhelm, first Emperor of Germany', dated March, 1880. I assume my other German great-grandfather, although he had a Polish name, coming from Bergfriede Prussia, signed a similar one somewhat later though before fathering a Wilhelminia (my grandmother).Way to show your renunciation of allegiance, Great- Grandpa! but by then Wilhelm the second was in power. I know he came after his first son was born in Germany (1890). He had a second son in the US in 1891.By 1910 ( I have the census record for his street), he had 8 living children  ages 20 down to 4. My grandmother, baby number 4, was 13.

Allegiance, such a strange word. For my first couple of years in school in NY state, we dutifully pledged allegiance to the flag every morning. When I was in first grade, initially there was no flag, a fact my teacher brought up several times, as the new flag was still in production showing all 50 stars as opposed to the one showing just 48  stars we used the year before. If you asked me exactly what I was pledging, I would have to tell you that I had absolutely no idea. Once I moved to Michigan, I don't remember pledging every morning though maybe I just forgot.

But this will be no more for Michigan school children. A bill was already passed in one of the houses of the Michigan legislature making the pledge mandatory for all children, every morning, even for high schoolers. There will be inspections to make sure there is a flag displayed in every classroom. It will be up to the student to opt out for religious  reasons or if they are citizens from another country (very common in Ann Arbor with all the foreign grad students). So while Rome burns, a special committee is formed to make sure the fire hoses match the fireman's uniform? Way to focus on what is important, Michigan House!

Sunday, November 13, 2011

A nun on the run

Sometimes I wish I would take my camera on my runs. My longest run since I had cancer took me within a mile of a convent of an order (Dominican) that still dresses in habits, rare these days. A nun dressed in full white dress with a black top piece, wearing long white underwear under the dress with black boots and a black coat or cape RAN by me. I saw her face just for a second. It appeared that she had gray hair. I thought, just great, an elderly nun can outrun me though she was taller than me and definitely thinner. I ran behind her for a long time on the 'scenic beauty' road. As it was Sunday morning, I think I saw only one car the entire time I was out there. She had some difficulty with the hills and would walk up them but still I couldn't catch up. She finally turned around and faced me smiling. Her hair wasn't gray but blonde (and she is definitely younger than I) and it looked like she was wearing a brown bonnet under the black shawl. Maybe she isn't a nun at all but Amish? Amish somehow make their way to our Farmer's Market so they must live near by.. I wouldn't think that running on a Sunday morning would be something they would approve of. When I got back, I looked up the Dominican habit, looked just like what I saw. And the Amish, they favor black or brown, never white. But such a strange sight!

Doing my exercise routine after such a long break made me very sore this morning. Fortunately after a few minutes of running, the endorphins kick in and I don't feel it.

We had lunch with Josh at our favorite sushi place, always nice.

A lazy day otherwise.

Saturday, November 12, 2011

LiveStrong

Today at the Y they were having a spinathon to raise money for the LiveStrong classes.  These classes are for cancer survivors to help regain their strength after cancer treatment with the help of exercise counselors who work with the survivor individually and in groups. Also you work out with people who have gone through similar treatment as yourself so there is a sense of camaraderie.  I started my class along with my neighbor who had the same diagnosis as I and had gone through the same chemo, while I was doing radiation. Aside from the fatigue probably due to my low red blood cell count, I had lost muscle mass, endurance and what I didn't realize, my sense of balance.  Although I was the strongest survivor (in the amount of weight I could lift), I could not balance on one foot for more than a few seconds. Alumni were asked to come to share their stories to motivate the spinners. I told them I would be happy to come there at 9 am but somehow this was changed to before 8. Too early for me and besides, my car was covered with a thick coat of frost.
But I am glad I went even though it is a tad condescending to a cheer a person for just surviving. The spinners were quite earnest and good for them! Last year they raised enough money to have the program for a year. One of my fellow speakers looked very familiar. Turns out she had been in a support group in the beginning with me and said how helpful I had been to her as I was able to tell her things that her doctors chose not to share with her. She had a much more dire prognosis than I but I see she has survived. There was a wall with names that the people were spinning for. I saw the name of a woman who was on a running relay team with me; my last race. I had no idea she had had cancer. While I was doing chemo, Naomi's basketball team had a fundraiser for this program at the Y. My friends came out to see Naomi play in the fundraising game though I think I had to buy all their tickets, but no matter, they came out.

And now I have a bright yellow T-shirt and mug along with a water bottle and gym bag. Cancer Bling!

It is a pretty fall day. Normally I would be out there running but I spent some time lifting weights instead.

Friday, November 11, 2011

11-11-11

We had our first snow yesterday. Very large flakes slowly floating to the ground where there was just a dusting this morning. Part of the past 3 days has been spent with Maya. Because of her delays, she will receive speech therapy twice a month and can go to an enrichment class weekly. Unfortunately the classes more appropriate for her were closed so we took the only one left, a class for ages birth to 5 with most of the participants between two and three. As Naomi had other things to do, I took Maya to the first class held in a kid's dreamland: lots of indoor play equipment, a train center, a kitchen center full of kid sized pretend appliances, every toy one could imagine. Every week there is an art project but Maya was a bit young for that. She zipped from activity to activity excitedly. There was a whole assortment of pretend food which Maya promptly mouthed. All mouthed toys have to be disinfected so that kept me busy. She especially enjoyed snack time. There is a circle time in which they sing songs that the kids can participate in. She can clap and raise her arms when asked to in the songs but that's about it. She enjoyed watching the others. There is only  one child younger than her though Maya is taller than some of the two year olds (she is tall and thin for her age).She did enjoy herself and the moms there seemed very friendly even to this old grandma.

So how do you make a one year old speak when they won't or can't? I sat in on her therapy session. Lots of repetition and association of certain movements with words and signals. I am not sure that this will speed up her development but we will see.

This morning when I was watching her, she amused herself transferring little candy packets from one box to a bucket one by one for 30 minutes straight back and forth. During testing, she was downgraded for refusing to put items in a bucket.

Her idea of a joke: she will offer up an object to you but soon as you look like you are going to take it, she whips the hand back and laughs.

As soon as I found another person to do my hair and finally get it colored and cut, my old hairdresser offers her services at her house. The new one who looks like just a slightly older Naomi, examined my hair and said that there was absolutely no curl left to it, only a bit of a wave in part of it. So I didn't even get to keep the one gift from cancer, curly hair, very long. I went back to the page boy I had before cancer. As for my hair, I am trying to get used to it. I do like the color. It looks exactly like my wig did.

We have had a string of minor victories here: the new baby is definitely a girl (as opposed to probably a girl) and added bonus, it has a spine, not visualized on the first ultrasound. We had received an annoying notice that we were being fined by being non-compliant with the condo association but that was taken care of and no fine needs to be paid. One of our chief sources of cash had taken a severe nose dive the month before but has almost recovered. Josh's medical problem is not as serious as first surmised (though still worrisome to me). Naomi has found a holiday job though it will be long hours and she will need a car. I was asked to edit a book, which I did hopefully to everyone's satisfaction. And tomorrow, I will give a talk on how LiveStrong helped my recovery.

Thursday, November 10, 2011

Pushing back the foreskins of science

Over the years, we had various company logos and slogans that we routinely made fun of. These slogans usually were just empty fluff:

PEOPLE WHO CARE (not!)

THE PATIENT IS WAITING (but the stockholder waits for nothing)

We proposed alternate slogans. My contribution is the title above.

Recent pushbacks:

Injecting a substance that blocks the gene that is responsible for blood flow to the fat cell. Without the blood flow, the fat cell dies. This worked in monkeys. Human trials will begin soon.

On the Triple Negative Breast Cancer front: a variant of the herpes virus selectively kills only TNBC cells in vitro (petri dishes) and in mouse xenografts (human cancer cells grafted onto mice).


Busy day here. Some Maya duties and later I will deal with my hair.

Wednesday, November 9, 2011

Dreamland

Stuff of nightmares: roof of Notre Dame Paris April 2002

Le Lapin Agile et la dame non agile: Monmartre

Villandry: Loire Valley: On my 49th birthday

More gardens and the town of Villandry
As said before, I hate the night. Either I am worrying about this and that, I am reading to concentrate on something else or I am having nightmares. Last night, I dreamt I was on a soccer team but the coach would not let me play though promises were thrown my way. I couldn't even see the game as it progressed as it was in some cellar that only players could enter. At half time, I said that I should be able to start, shouldn't I? the second half. Well the game was close, so no. But if it were not close, I could maybe play defense. (when I was coach, I would let the weakest player play offense). I woke up thinking how unfair this was. when I was coach, my teams usually won and then I remembered: I never have played soccer in my life and if I did, my coaching notwithstanding, I would suck. But usually in my dreams, I am travelling. And usually I am running, 60 miles at a time. and I go down the same paths which have no basis in reality. I visit places that don't exist but I still go back to the same ones. They all seem so familiar.

But morning comes, my favorite time, and I am up and happy to have my coffee prepared for me while I do my one allotted puzzle and troll the internet. My new BFF, the cable guy, was here for almost 2 hours replacing almost everything. Of the 6 visits we've had in the past 3 or 4 months, this one has been here 3 times. I don't need to show him where anything is: he knows the house now. Let's hope that 6 times the charm. My running was delayed until the afternoon. I dressed for the 40s and felt uncomfortable most of the run. Turns out that it was almost 70 degrees out.

Today is Maya's first speech therapy. At the same time, my son will hopefully be getting some answers to a medical concern.

Tuesday, November 8, 2011

You Will Be Fit!!!!!

I understand the extra costs to health care that smokers and overweight people incur and that companies that help their employees with insurance premiums have an incentive to help rid these people of bad habits but Josh's company seems to have gone too far. In order to receive a sizeable discount, they don't just take your word that you and your family members are non-smokers, a blood test needs to be taken screening for smoking residue. Overweight people can enroll in WeightWatchers or be fitted with a  computer chipped pedometer that reads into a central database making sure there is enough movement daily. Josh is not overweight but he took one of the pedometers for fun and now sees how many steps he takes. Ms. Maya was running in circles around his house so he fitted her with it: lots of little steps but  her fascination with buttons annulled his steps for the day.
Our insurance so far is not so invasive. In return for filling out a questionnaire with our weight and cholesterol results, we get a minor discount.

Again I am waiting for the cable guy. For the sixth time! We went an entire two weeks without any outages but for the past 3 days, we have had several. Yesterday, the computer and phone were out for 3 hours.

I am an election day widow again. Steve left well before 6 am and might not return until midnight to be an election official. Burning issue here: whether the city should pay for the maintenance for the sidewalks rather than the homeowner whose property they cross. The city came through our neighborhood spray painting bad blocks at $150 a piece just a few years ago. A neighbor and I followed them looking at how arbitrary these markings were. Totally crumbled blocks ignored but minor chips marked. Number one reason for sidewalk damage? City trees but you are not allowed to kill them, just pay for the damage they do. So it would probably be fair for the city to pay for all of this but annoying as we just paid for the damage caused by Ms. Norway Maple. As the bond issue is tied to a bridge repair request (why not separate bonds?)it might not get passed.

Also there is a growing sentiment to cast out all city council members responsible for writing this absurd crosswalk law. If anyone is seen to approach, not just enter a crosswalk, cars have to stop even if the speed limit is 40 and the road is a 5 lane state trunk line. As could be predicted, numerous accidents have occurred because of this on the big road near our house as drivers did not interpret correctly what 'approaching' means and out of city drivers had no idea exactly what our bizarre laws entail. No one has died yet but pedestrians who thought that everyone is going to stop for them have been narrowly missed. Also these crosswalks are not all lit at night. Lots of rear enders. What they need to do if they insist on the law is having the flashing overhead lights so it is clear to all that they need to stop. These are expensive but the lawsuit just waiting to happen will be expensive for the city too.

I did have nice weather yesterday to take Ms. Maya to the park. I am trying to encourage speaking with no success. She is getting good at copying my hand signals however. Her first therapy session is tomorrow. We will see what 'experts' can do.
Steve with Naomi at the same age Maya is now. Maya's hair finally looks like it is beginning to grow but her mom had more hair at 3 months

Monday, November 7, 2011

Simpatico

Simpatico..I always loved this word. Friends that are on the same same wavelength in their values and concerns are simpatico. But in Italian 110, we learn that simpatico means..nice. Nice, a word to describe someone you barely know but so far you have seen no signs of meanness or evidence that this is an unlikeable person so you describe the person as nice.

While were in Italy learning the language and taking a film course, we saw the movie Le Fate Ignoranti which translated is The Ignorant Fairies though the English version was retitled His Secret Life. My Italian teacher, not Italian himself but he taught the class, said that the fairies in question were the gay people in the film. I asked the 'real' Italians who stayed with us learning English whether Italians ever use the word 'fairy' to describe a gay person. No they don't. This pejorative probably hasn't been used since the 50s here and probably never at all in Italy. Even  English English has its own silly pejoratives, Daffodil anyone? Anyway, the Italian teacher's explanation made no sense as the ignorant one in the movie was not gay. The fairies in question I believe are similar to the ones in The Midsummer's Night Dream who have magical powers to make mortals fall in love with inappropriate people (or a donkey in the play) for their own amusement although in Shakespeare's play, eventually the fairies made things right. Or Fate could mean The Fates, similar to fairies but have even more powers and are not necessarily benign and are under no moral obligation to make things right.

Sometimes I think Le Fate are messing with my life and they are NOT simpatico or simpatiche to be grammatically correct.

The 'real' Italians puzzled over our slang. As an assignment, they were to interview us. The man I was interviewed by was puzzled by our use of the word piss, which originally was a vulgar noun and verb to describe urine or urinating. Here is another example where the English English deviate from the American. To be pissed in England is to be drunk. Here it is both a transitive and intransitive verb.

I am pissed. (annoyed with everything in general)

I am pissed at so and so. (annoyed with a particular so and so)

My interviewer was especially puzzled by the last preposition. Shouldn't it be 'on'? He could see pissing on someone but to piss at someone did not make any sense.

I suppose an alternate title for this post could be Lost in Translation.  Another post I recently made should have been titled Isn't it Ironic? I could change the titles but the original always sticks around unless I delete the entire post. One of my recent posts was entitled 'post' as I hit publish before I could type anything.

Today is my Maya day. I hope that the rain holds out so that I can take her to the park. Yesterday I was feeding her treats. She clearly wanted more. I asked her to say 'more' Instead, she signed with ASL  to indicate more which the therapist last week was trying to make her do.

Sunday, November 6, 2011

Fall back

Burning bush and yew

The other burning bush

Last of the leaves on our Norway maple. Last spring, the city tree guy said it was a sugar maple but I think he is wrong. Yellow vs orange leaves plus the leaves are the last to fall.
Daylight savings time or daylight saving time? The latter is correct. For some reason, the daylight saving time was extended one week. Michigan didn't use to have it at all as we are on the Western edge of the Eastern time zone. Growing up, I listened to my tinny transmitter radio  to CKLW,  which broadcasted from Canada, south(!?) of here. They had daylight saving time and we didn't so I tried not to be confused when the time was an hour off. I spent a week biking in Indiana, which seemed to let each county decide what time zone they rather be in. Confusing sometimes. I had stayed the night before in a hotel that promised coffee at 7:00 am. At 7:15, still no coffee and I was becoming crabby and vented to the desk. I was then informed it was only 6:15 am.
Oh.

Still is pretty outside here. Maybe I will see some of the kids today. Below are my purple toes and sparkly orange fingernails.

Saturday, November 5, 2011

Delusional me

Me in 1985 capable of doing marathons and triathlons at a good clip
There once was a time that I would never leave the house without a good base of foundation covering up any imperfection on my face. I look at my bare face now and think..not too bad; I don't need foundation anymore. Now did my face suddenly become smooth as silk with age? Probably not. What has changed is my eyesight. I no longer am able to focus on things as small as pores. No one else probably could that is older than fifty either. I suppose I could do a reality check and ask Naomi as she is brutally honest but, I'm not in the mood.

And the running. I still think I am doing it though my times are getting slower and slower and slower. I have lived in the same area for a long time and have a good memory for silly things like how many minutes to a given intersection. What remains the same are the number of minutes I run. The watch does not lie. I tried to run while doing chemo. It was so hard. I would run for a mile total trying to get 60 seconds in without stopping. Sometimes I would need to stop 15 times just to make a mile. Now I can run (or whatever one might call this motion) 90 minutes before I need to stop.

And my body. I think I don't look all that bad and then I see photos of me...

It is a cold, crisp fall day. I ran by a small herd of deer (3 does..where are the bucks?) in the neighborhood adjacent to mine, closest to my house yet. Further deep in the woods I stopped to hear snorts (probably a buck) but the vegetation was too dense to see anything.

I was watching House Hunters the other night, international edition. They featured homes in Abruzzo where I had stayed 3 years ago. One house was rejected as the countryside around it were chock full of adders. Poisonous snakes!! I didn't even consider those as I was running cross-country on the sides of the mountains there. I worried about being gored by boars, a bit nervous when I saw the wolf, concerned about scorpions that I found around the monastery where we stayed but never considered snakes.

Friday, November 4, 2011

Doe..a deer

Me sitting  at the Jumbo Rocks campsite in Joshua Tree National Park
The leaves have been slow to fall this year although the colors changed more than a month ago. My burning bushes and barberry are bright red. Very pretty. On my long run into the country today, I am treated to two wildlife experiences at once. A hawk screeches over my head (I never heard them make a sound before; sounded like an eagle) while a doe stands by the side of the road not bolting until I am just a few feet from her.

Thursday, November 3, 2011

The problems with language

Over the past 2 days, Ms. Maya has been evaluated for possible developmental delays. This has made Naomi testy as there is always some element of blame when ones child isn't performing as they should. She feels that there is extra scrutiny since she is so young and has little income. She devotes herself full time to Maya and wants what is best for her.Maya is her pride.

I do understand how she feels as all of my children over the years though for different issues have been found deficient and I could feel and hear It's all HER fault! even though I was NOT a young mother and probably considered 'high income'. I bristled when someone tried to have Josh pronounce a given word correctly as if I never considered to do this myself. Further waves of irritation when a list of much younger kids was given that could pronounce that word. Whispers of it is no wonder......because she's a working mom, she's got the wrong priorities, she's got the kids in athletics, she had a flawed childhood herself, she didn't set the right limits, she didn't say No, she's an enabler..on and on. And the kids all have their own lists of my shortcomings which they are too happy sometimes to recite. Blessed as we all are with 20-20 hindsight, I have my own lists of shouldas.

On Tuesday, a specialist showed up at Naomi's. Although tired, Maya was thrilled to perform for a potential adoring fan and did all her tricks. Aside from the language issues (she knows only a few words and really does not associated them properly with what they are to represent), they are looking for imitative behavior as this is the first step for learning assuming one is healthy otherwise (she needed a hearing test first). She clapped when shown, she pretended to use a phone, she waves when you wave. For extra credit, she points remote controller shaped objects at the TV. For the second evaluation, Naomi was to fill out a lengthy questionnaire. This was painful as it exposed some of her own difficulties in language. She was to distinguish between what Maya sees, looks at and watches. To Naomi, these seemed like the same word. One question was whether Maya used utensils. Naomi answered yes because Naomi feeds Maya with a spoon.

That's not what they asked.


While it is true that Maya will put a spoon to her own mouth (as she puts almost everything), one can't trust her to skillfully use a spoon to put applesauce in her own mouth.

The second stage of the evaluation was yesterday with 4 different specialists at the district's preschool. It was delayed due to a fire drill and Maya was missing her nap. Maya was very crabby and did not want to focus on the tasks. Her lack of speech right off the bat gives her the needed 20% delay to qualify for services. Much of the tests were trying to see if she imitated certain new behaviors and how good was she at solving problems. But the compliance issue kept coming up. They wanted her to put objects into a container and she wanted to throw them on the floor. She was able to imitate some things like coloring with a crayon and banging on a drum to reproduce a certain sound so she didn't completely flunk. For starters, she'll receive 2 therapy session a month and  can go to an enrichment class weekly.

How would my kids and I do on their tests at this age? Shanna and Naomi would have done just fine; Josh and I would have flunked. Naomi's difficulties were not obvious until much, much later obscured by her unusual memory tricks and her early fluency which is mistaken for mastery.

Here are three concepts that I would like the reader to consider and use appropriately in the following situations: IRONY, CO-INCIDENCE, AND MAGICAL THINKING.
  1. A runner brags that for years she has been relatively injury free. The very next week, she trips while running and breaks her arm.
  2. One week, a woman spends comforting her close friend dealing with a breast cancer diagnosis and the very next week discovers her own breast cancer.
  3. A woman berates a stranger for letting his dog poop on her friend's yard. The next week it is discovered that the man is her SIL's co-worker.
  4. A woman is thinking that everything is going fine for at least one of her children and the very next day finds out how untrue that really is.
  5. A woman's co-worker turns out to have been a brother's co-worker in a  distant state for all involved.
  6. A woman who has many talents, has also many shortcomings, one of which is the inability to see things in three dimensions (spatial reasoning?) yet her main source of income relies on this ability.
  7. A man diagnosed as a child as having a  speech defect and possible other cognitive disorders routinely gives presentations to large audiences and is considered gifted in many respects in a very difficult field.
  8. Two of a woman's children have ultrasounds independently scheduled on the same day but the scans show  very different results.
Nota bene: Magical thinking as I see it covers both the positive and negative aspects as in If I think it, it will happen. ( a  variant of  the Laws of Attraction). Situation #2 describes someone else's experience, which was IMHO wrongly described as irony.#8 is a co-incidence but also very much an irony.


Wednesday, November 2, 2011

Asking the right questions

This has not been a good week for a variety of reasons that I won't go into completely due to privacy concerns. Suffice it to say, I have more stuff to keep me up at night.

At lunch the other day, Josh recounted a recent visit with the doctor who diagnosed him with a non-life threatening problem. A chill went through me as I have read about this situation and its implications that could greatly impact his quality of life. I asked if Dr. Useless made him aware of these and that he might need a consult with a specialist ASAP. No, nothing of the sort was mentioned. Well he has a consult next week no thanks to me scaring the begeesus out of him but it makes me mad the lack of advice given to him. He will be armed with some pointed questions.

This summer, a good friend had a very painful, quality of life ruining problem and sought  help from her primary. The primary was able to diagnose the problem, which had no immediate cure but the situation would resolve in a few months. The diagnosis seemed perfectly reasonable but to deal with the side effects, my friend had to see a specialist. Instead of just dealing with the side effect, the new specialist disagreed with the original diagnosis and went on a very expensive, painful witch hunt for a new diagnosis, which was never made though lots of scary suggestions were thrown her way. My big question was why didn't the specialist think the primary was right? My friend never asked, just endured more speculations and useless tests. Meanwhile, the primary left the area. A few months later, the situation did resolve per the primary's prediction.

Both my friend and son are highly educated, bright people but both did not ask the right questions. Part of it was who are you to question the experts. So, Sue, since you are so quick to criticize others for failing to cross examine and second guess their doctors, certainly you never would be guilty of this yourself? Well I am, once for my own concerns and worse, once concerning my daughter's health care.

With breast cancer, there is a small window to get chemo and to kill the rogue cancer cells that might be circulating through your body. This window is even smaller with TNBC as the cells are much more aggressive and once they form mets....game over. I had just finished my two surgeries to excise the tumor and the surrounding suspicious cells, it was time for chemo. The onc thought we could delay it a month to give me time to recover. I questioned whether this was wise as it just gave those cells which according to my staging, had a 50% chance of being there, a greater chance to gain a foothold. She replied that there were studies that showed that delaying chemo one or even two months made absolutely no difference in over all survival. The question I should have asked was whether these studies were done in TNBC patients or were they just applicable for BC patients in general. Some doctors for convenience sake seem to treat all BC the same. For instance, another TNBC patient on my blog was given a script for Tamoxifen after treatment because that is what most BC patients take. But it would not do any good for TNBC patients. This patient knew to question. Well I am still alive but I think I gambled unnecessarily.

When my daughter was ten, she needed to have both of her ureters re-implanted to prevent eventual kidney damage due to this condition known as reflux, which causes the urine to back-up under pressure into the kidneys. This now is a simple surgery but not back then. She did not recover as quickly as planned and all the pain killers made her ill. It was hell. On top of that, I was pregnant and Steve had to leave to deal with his dying father. I kept finding temporary homes for Josh, which upset him greatly. At one point, they thought she had recovered enough to come home though I would need to provide lots of care. For instance, her bladder was still being allowed to recover. Her urine was shunted into two bags, one from each kidney. She had surgical drains that needed to cleaned too. I noticed right before I was to take her home, that only one bag was filling up. Shouldn't the kidneys be doing equal work? Or maybe, did they find a way to reroute all this plumbing so only one bag was needed but then why did she have two bags? I told all my concerns to the nurse. She said she would check and soon came back and said this was fine, don't worry. What I should have done was ask the doctor myself instead of trusting this nurse. I hadn't much sleep in the past week, I was tired from early pregnancy (which I ended up losing) so I wasn't as thorough as I usually am. I took her home and throughout the day. she became sicker and sicker. She was on antibiotics to prevent infections but of course, she puked them up. The one bag was not filling at all. Perhaps there was a blockage. Meanwhile my daughter was not alert at all and only capable of moaning. I took her to the ER and it was hell trying to get her re-admitted. I was correct, there was a blockage and my daughter suffered unbelievable and unnecessary pain because of it. The next morning, Nurse Incompetent Liar was assigned again to her care. I told her to tell her supervisor that I find her personally responsible for pretending to seek answers and that she needs to be reassigned. I should have insisted that some disciplinary action be taken. But part of the fault was me...I should have spoken to the doctor myself and refused to take her home until my concern was addressed. Before all of this, she weighed 70 pounds. After this, she weighed 60 pounds and was almost 5 fee tall. She was a skeleton. Up to that point, her growth curve was almost identical to that of Naomi's later on, destined to be as tall as Naomi but she is 4 inches shorter.

Another positive example of asking the right questions: Naomi was about to be discharged with Maya from the hospital. At the last second, she asked whether they had typed Maya's blood and if Maya was Rh+, highly likely, when are they going to administer the Rhogam? It is scary that one needs to watch out for all these factors.
It is pretty out still but soon a mass of cold air will hit us so there will be no more running in shorts.
Today, I will go with Naomi for a further evaluation of Maya. The initial one yesterday indicated, indeed, something should be done but today will decided just how much.

Tuesday, November 1, 2011

Busy Bee and the pedantic penguin


I am hoping there are some better pictures of Maya on my camera which Naomi has at the moment. Ms. Maya is becoming harder and harder to photograph as she is constantly in motion. Busy bee...from one of my favorite movies Best in Show from when a neurotic dog's even more neurotic owners go ballistic as the dog's favorite toy, Busy Bee, goes missing.

She went trick-or-treating in Josh's neighborhood as the houses are closer together than in ours and his sub is especially kid friendly. This year, we still have daylight saving time so it is light out at 6, the time I showed up in his neighborhood, all ready filled not only with the kids in costume but the parents and the dogs.

She was out there only about a half hour as she was getting cold and besides, she can't really eat the candy though I gave her a little piece of a peanut butter cup and someone had given her goldfish. She was perfectly happy to rush to the door, along with Sunny, the German Shepherd, to greet the kids.

Such elaborate costumes these days!

At one point, I went to the door myself to find a boy of 8 or 9.

Oh, what a cute penguin costume!

It's an emperor!!!!

Huh?

I'm  an EMPEROR penguin, not just a penguin.

OK. (I should have asked him if he was sure he wasn't an adele)

As he waddled off, Josh tsked-tsked that this poor boy probably got beat up a lot at school. Aside from being alone although perhaps a parent was waiting on a sidewalk (boys that age like to travel in packs), there is a certain age at which little boys do not want to be cute any more and refuse to dress up as cute animals. Maybe when they are 5?

I thought back to my childhood to a boy in 6th grade who hands down, was the cutest boy. All the girls had crushes on him. He and I had the same birthday. One day he showed up minus his long, black eyelashes and a good part of his eyebrows. I asked what had happened.

Tired of being cute.

Josh, a cute boy if there ever was one, bristled when he heard the word. Below at ten holding Naomi who is one.
It was a nice Halloween. Josh fretted that he hadn't bought enough candy and started being very stingy, a fact noted  by some of the recipients. I asked if he wanted to be known as the crappy candy guy. True he got some points for his glowing UM carved pumpkins, his cool dog, his really pretty wife dressed with cat ears but one 'fun-size' milk duds box? Milk duds...aptly named.

We had some wine, rationed for me (love it when your kids tell you what to do) and freshly roasted pumpkin seeds. Back at the home front, Steve reported few treaters. We have plenty of the fruit snacks left over. Indeed for a while, only the med students collecting canned goods for the homeless showed up. (I was prepared for them). Across the street, the miracle baby's parents (baby in question is now 14 but has many problems due to her extremely early birth) go all out and had all these flashing lights, blow up ghouls playing an organ, dancing skeletons, etc all over their yard. I brought Maya over earlier to admire them up close and she was terrified.

Back in Boston, the kids slogged through snow to return to a powerless house. Not so fun plus Oliver became ill.

More Maya:








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