Wednesday, March 31, 2010
Tuesday, March 30, 2010
Someone last week asked me who my surgeon was. I could not remember it for the life of me though her earnest face came quickly to mind. The name popped in my head several days later. I really have a hard time with names and dates. I forgot a dear friend's birthday remembering it too late, a day later.
I am still having trouble keeping asleep ( no trouble falling asleep). I worry about the dumbest things. Last night I dreamt that Naomi lived in a thatched cottage and wasn't taking proper precautions against the roof catching on fire. It took a while to tell myself that although her complex has caught on fire twice in the last few months (once a clear case of arson), her thatched roof was not a problem. I read for a while, fall in and out of sleep, wake briefly when the high school bus picks up kids at 6:48 am in front of my house and awake for good to the sound of the special bus at 7:24 that picks up the 'miracle baby' (as per her mother) across the street to take her to the middle school. It makes much more noise. The baby was born at the same gestational age as Naomi's baby is now to a mom who is probably my age now. She is unable to walk at age 12.
Naomi goes in for her 2nd ultrasound tomorrow on her birthday so maybe we'll have a better idea about the sex other than '65% boy'. The official reason is that her uterus is growing faster than anticipated. I have warned Naomi ahead of time that just because they might find a baby the size of a 30 week old fetus, it probably is younger. She hasn't inherited much from me but I am guessing the ability to grow a big baby might be one thing she has. Since she has little bodyfat, it isn't difficult to see its outline sometimes. In that picture I posted last week, the lump to the side is the baby.
It is supposed to be 60 degrees today but the temperature is hovering in the low 20s. They measure it in a low spot 10 miles away from here so I suspect it's much warmer. A good day for a run.
Monday, March 29, 2010
But my friend was insistent, so I read it anyway. It too is filled with people struggling with difficult situations but at least rightthink doesn't convert to miracle cure. It speaks to acceptance of awful situations with grace. No one is miraculously cured but some inner peace can be obtained.
Hopefully my son is back from Austin, TX. The poor economy here has scattered his friends. Many live in Chicago and he goes there frequently but two of his groomsmen live in Austin including a boy he met at daycare when he was 18 months. When the boys were 11, I took them on a cross state bike ride. Josh had done it the year before with me but thought it would be fun with his best friend. About 30 miles into it, his friend begged me to carry his backpack. It was very heavy.
What's in it?
You told me to bring books so I have those and I bought maple syrup for my mom. She likes it.
Did you have to get it in a ceramic jug?
But once he learned how to pack light, he was fine.
Naomi came over to study yesterday. The baby kicks alot but when she grabs my hand to feel it, the baby calms down. Hopefully I'll have this power when its out of the womb.
A strong north wind today which makes running up to my favorite place difficult (though easy coming back) but I persevered.
Sunday, March 28, 2010
BRAC1 and BRAC2 deletions are passed on in an autosomal dominant fashion also. If you have it, you received it from one of your parents and you have a 50% chance of passing it on to your children. If you have it, you are at increased risk for ovarian, breast and prostate cancers and possibly colon and pancreatic. So if you were to remove your ovaries and breasts, you'd cut your chances of having those deadly diseases significantly. At cancer support day at the Wellness Center yesterday, I ran into a woman whose BRAC gene has wreaked devastation in her life and in her family. She has 5 adult nieces who refuse to be tested even though their parent is nearing the end of Stage 4 cancer. Statistically half of those nieces have the gene too and could do something to lower their chances of having cancer but they don't want to know about it and now the aunt isn't allowed to nag them.
I haven't been tested for the BRAC deletions as my family history isn't consistent with having it. The main suspicion is that I had TNBC, the variety of BC that this deletion generally leads too.
The Red Cross finally told Dontae he has A+ blood so Naomi will need Rhogam in a few weeks given the high chance of incompatibility with the baby's blood. Only 3% of African-Americans are Rh negative so that was a long shot. The other day at the OB, the nurse was doing a history trying to identify any possible genetic redflags and asked Naomi if she were of Ashkenazi Jewish descent.
Um, Naomi, your father is an Ashkenazi Jew.
We are hoping for hybrid vigor here. Naomi probably is not a carrier for the Sickle Cell trait either. Naomi and Dontae have a clear idea what their baby will be. If it is a girl, a supermodel. A boy, a basketball superstar. Don't tell them otherwise.
So I think I have moved on regarding these support groups. Cancer no longer is my biggest worry.
Friday, March 26, 2010
The girls however went as far as the final 16 and lost.
I miss those days.
A downside to being a teenage mom is the presence of the mom at the OB visits. She wants me there as she isn't able to process all the information given. However, sometimes she has to answer very personal questions and I am there. The OB doesn't flinch for a second. I am liking her more. I wrote the other day about my visit to a gynecologist when I was just slightly younger than Naomi. As intrusive as I thought the questions were, at least my mom wasn't standing right there as I hemmed and hawed for an answer.
Recently Naomi had shared something personal with me and instantly regretted it.
You would never had told your mother that, right?
Um-my mother wouldn't even know what you said means.
When Shanna was in college, she went for a visit to her primary and wanted me there as I knew her history which is a bit complicated. The primary was clearly uncomfortable with me there and glared at me throughout the visit.
I later brought my mom to this same primary to get a clean bill of health so she could be admitted to a nursing home. Living with my father, my mom with Alzheimer's Disease had been neglected.I had tried to clean her up (nailcare, extra hair removal, general cleaning,etc)but it was clear she hadn't been taken care of. For one thing, despite having been tall while younger, she had shrunk to 90 lbs. The primary assumed that all this neglect was my fault and glared the whole time. My father rarely let my mother out of his sight but at this time, he was hospitalized and it was clear she couldn't be with him any longer. Yes I knew my mom was in trouble and had had Social Services investigate. But although they asked questions, they would never answer any. All the primary needed to do was confirm (with the help of a chest x-ray and the radiologist instantly had told me there was no problem) my mom did not have TB but she decided that I needed to be punished by having my mom stay 2 more weeks with me (and I couldn't go to work while my mom stayed with us). She said there was no medical reason for her to sign the form immediately and I would just have to wait until she had time. Finally after me haranguing her non-stop, she relented but I was told to never, never see her again. No problem with that.
Ten degrees this morning! Where is our spring?
But it was sunny and icefree so away I ran.
Thursday, March 25, 2010
Wednesday, March 24, 2010
Tuesday, March 23, 2010
Maybe at some point, I'll hang up a world map and stick pins where my visitors are from. When I lived in the co-op, a man had a large map of the US on the wall with pins stuck in various cities. There didn't seem to be any pattern to them as there would be if he had made a cross country trip. I finally asked what the pins represented: places where various coke bottles he drank from had come. To each his own.
From the science news (Tuesday is the Wall Street Journal's medical news day): genetic diversity and the effect on drug metabolism. It turns out that Plavix needs to be metabolized by the liver to be effective against forming blood clots after a patient has had a stent implanted. This is the number 2 selling drug so many are effected. Most people have the cytochrome necessary to do this but there are two subsets of people: some with reduced cytochromes so they'll need twice the dose and some who can't metabolize the drug at all. They have an expensive test that can identify these people but insurance doesn't usually cover it even though more strokes will result if the people aren't identified. Bits of information such as this keep appearing. Last year it was discovered that taking some antidepressants interferred with the conversion of Tamoxifen to its active form thus putting these ladies at risk for recurrence of their estrogen positive tumors.
I decided to take some of this new research personally and take a baby aspirin a day. In a very uncontrolled study, it was shown to cut breast cancer recurrences by 50% presumably by reducing inflammation. Reducing inflammation from any source is thought by some to being a key for cancer prevention. There are even anti-inflammation diets. Some foods presumably increase the amount of C-reactive protein in the body, a marker for inflammation (see http://www.nutritiondata.com/help/inflammation) and nutritionists have determined which foods are IF positive or negative. Blueberries are surprisingly on the bad list despite their antioxidant properties. I'm not sure how much I believe all this but in the meantime, the baby aspirin can't hurt much and might even make my arm feel better.
Where is the sun? I bought even more solar lights yesterday and want them charged up. My patio now is a tangle of strings of lights flashing through various colors-fantasyland. Not too classy but it gives me pleasure. I had a good run today too. The peepers are still going strong. Later Naomi and her puppy will come over. I've been trying to teach the dog to walk on a leash which I don't recall my other dogs having had problems doing. She does somersaults behind me trying to escape but at 5 lbs, I am stronger than her. I did teach her to sit.
Monday, March 22, 2010
Because then you could have sex with no consequences.
Thanks an effing lot. Again logic wasn't her strong suit. Better that I writhe in pain one day in month than risk me trying out consequence-free sex. Once I got to college I learned I could get contraceptives from the Health Service even though I still was a minor. But you had to go through a contraception education class and fill out a history full of what I thought at the time, very personal questions such as: frequency of intercourse. My then 18 year old self was outraged. In what universe is THAT anyone's business!! I left that one blank. Big mistake as then I was asked in person. I mumbled something about once or maybe twice a month, I don't know. Well maybe you should consider a less drastic form of contraception given the infrequency of such event. Um, I haven't established a regular pattern of intercourse due in part to having no contraceptives.
That worked and no more cramps until much later when I was trying for a baby. After that, ibuprofen eliminated any pain left.
Naomi was asked to distinguish between symptoms and signs of a disease in one of her classes recently. One you experience but there is no proof of them such as headache, fatigue, nausea; the other one can clearly see: a rash, swollen lymph glands, elevated temperature. Signs are given more weight than symptoms. Heaven help those with only symptoms and no signs!
Early in labor with Shanna, I thought I was experiencing terrible pain. The nurse on duty felt my contraction and told me that it was nothing-wait till I get a 'real' contraction!!!
A gray drizzly day today. I did get a run in before the rain. Yesterday after having lunch with Josh and Julia, I went to stretch out my muscles at the Y. Fortunately my back pain is almost gone though the frozen shoulder persists. I spent too much of today renewing my license. An incredibly long line and very inefficient Secretary of State workers!!! But I am good to go for another 8 years.
Sunday, March 21, 2010
I woke up 2 days ago with a pain in the middle of my back. Maybe I slept in some silly position, I don't know what I did. I was too busy to run Friday but decided to make up for it Saturday. I have a quota for the week and I am full of self-reproach if I don't make it. Yes I realize how silly that is. I was still in pain yesterday morning, but no problem I have my trusty endorphins that will kick in, hopefully sometime SOON, please. I went over 8 miles on the so-called scenic beauty road 2.5 miles away. It goes through woods and plenty of wetlands and usually I don't encounter more than one or two vehicles. During some seasons, I don't dare stop or I get eaten by deerflies. Yesterday the overwhelming sound was that of the spring peepers. The temperature had dropped considerably. A big front of snow hung just north of me on the weather map, I was hoping it wouldn't hit me. I hadn't been so far on this road for a long time. It used to be more interesting going by the Highland cattle (very long shaggy red hair), the miniature horse farm, the sichuan pheasant reserve and in the other direction the bird farm that had black swans and peacocks. All are gone now. At one point, there was a great deal of fresh blood on the road. A deer? It isn't hunting season. The predominant dirt in these parts is clay. When dry, it is hard as rock but after alot of rain, it becomes spongy-very comfortable to run on. I could still feel my back but it was way in the background but of course, after I stopped there it was again..
If I lie perfectly still on my back I don't feel it but I am a tosser and turner. It probably drives Steve nuts. He stays in one position for the night. (By contrast during the day, he is a fidgeter annoying me with his constant motions). He'll put his arms around me but after 10 minutes or so, I feel trapped and need to move. But if I am not careful, I'll hurt my bad arm and now the back. Something else to keep me up. Hopefully this will pass.
So a low-key day. Shanna and her family were en route home; Naomi went to Dontae's family's BBQ. A friend came over and we watched Ricky Gervais. He actually is quite funny.
Saturday, March 20, 2010
deer photos by dk
For the last two days, the city tree crews have been by pruning the trees and then with their big truck, grinding up the branches. This process is extremely fascinating to Oliver. He'd happily watch them all day risking hearing loss as it is a very noisy operation. Yesterday the crew was right next to my house although my city tree didn't need pruning. When new houses go up in Ann Arbor, one or two city trees are planted on their easement between the sidewalk and the street. A variety of different trees are used so neighborhoods don't face total deforestation such as due to Dutch Elm disease although the city has plenty of elms that escaped that. Our neighborhood had a disproportionate amount of ash trees though and the ash borer killed all of them. I believed I have a Norway maple but the tree man said that it is not a Norway but a sugar maple. It is very early spring so there aren't even buds on the trees so he was identifying it from its root patterns. He said the maple in my yard though is a Norway.
Yesterday was my last visit with Shanna and the precious boys. I showed Oliver my first crocus and he promptly picked it-purple-one of his words. They go back to Boston today. Shanna promised a more extended stay this summer with more 'Sue' time.
Later, it was off to Fashionable Ferndale and The Fly Trap-a 'finer diner' with my friend to score some tasty pho. On to the Detroit Institute of Arts. We were turned away from the main parking lot puzzling as there were no special exhibits there that I knew of. Turns out that some real estate tycoon was having his funeral at the DIA. He had lots of well-dressed, rich looking friends too. I wanted to show my friend the Diego Rivera murals-the showpiece of the place and I was especially interested as I had just read a novel somewhat based on his life. During the Red Scare time, the museum had to put up a sign decrying Rivera's politics but said the murals would not be destroyed due to their artistic merit. But the Wisteria Gates to the Rivera Court were closed for the hotshot's reception!!! Soon they opened so the help could bring in food and we went into the court promising not to eat the food. Two of the Rivera experts suddenly appeared to answer any questions about Rivera we might have. They reminded me of the Book People (Naomi's writing assignment this week concerned Fahrenheit 451 and the few people left in the world that appreciated literature each chose one book to memorize). I had asked one of them about Frida Kahloe, also a person of interest to me and Rivera's wife. No she just knows about Rivera.
As a child, I remember just 3 works of the museum: the Rivera murals as they were so large, Van Gogh's self-portrait-interesting as he had cut off his own ear, and Copely's Watson and the Shark showing a boy desperately trying to swim away from a shark gnawing on his leg.
The museum has many German artists that I know very little about. My favorite era is that of the Impressionists. My favorite museum being Musee D'Orsay in Paris-Impressionist's Central.
Later that evening, a few of us sat in the last warm evening for a while sipping wine listening to the spring peepers, which would suddenly stop for no reason we could fathom, and watching the deer herd silently strolling in front of us. It consists of about 10 individuals. When the peepers stopped, we could hear the trills of the red-winged blackbirds. Soon more wildlife appeared as the sun set, bats and a lone raccoon who didn't seem too concerned about our proximity emerged. As it became darker, the deer became more bold and edged closer to us. Underneath us, we could hear something scratching and fussing; we assumed another raccoon. But shortly after we became too cold and it was too dark to appreciate much, the skunk sprayed the house.
Friday, March 19, 2010
Thursday, March 18, 2010
Steve in 1991-found when I was looking for a picture of Josh. Isn't he
cute? Fortunately for us all, the kids inherited his looks
Poor Daniel and his parents spent most of the day yesterday in Pediatric Urgent Care at the hospital dealing with his cold that had gone bad. He had 'retractions' meaning if you were to look at his chest while he breathed, his whole abdomen would cave in with the effort. Meanwhile his oxygen levels were low so his efforts weren't delivering enough air. Chest x-rays revealed the pneumonia-an early case so he was not admitted-just nebulized repeatedly. They were given a nebulizer to take home. They are to return today. Update, she called while I wrote this. He is still wheezing away. Early asthma? The eczema he has according to the peds could indicate hypersensitivity. Someone should learn not to sneak hummus into him even though her kids survived it.
Naomi's appt was cancelled due to the OB being in delivery at the time. An option to come in anyway with the nurse doing the measurements was presented, but we'll wait a week. Meanwhile they will send an ultrasound requistion. With the change in our insurance, we now don't need to stick with this lady. She seems very friendly and non-judgemental but I wonder about her C-section rate. She seems very firm about not letting one go beyond one's due date, which in Naomi's case was determined from an ultrasound. Presumably fetuses (fetii?)don't vary much in size early on so this ultrasound estimate is good for within a week. But what happens if Baby Taenae is unusually large for gestational age? Seen this before. Also she didn't seem to take any measurements of Naomi's pelvis. Maybe she's good at eyeballing but somewhere I am afraid, she looks at Naomi and sees "C-section". I asked if she thought Naomi's pelvis was adequate for birth. She said, well she's a tall girl..probably is. Well I am hoping that she inherited my capacity for big babies. Steve's mom seemed to be good at delivering (though probably while unconcious)big babies too as Steve was nearly 10 lb. Shanna's friend in France, now in her 39th week, informs us that in France, they go by a 41 week schedule and they don't even think of inducing until you hit 42 weeks. C-section rate there..5%. Here 30%. With Naomi's doctor..I bet higher.
Instead of me running, Steve and I took a long walk down by the river. Very nice weather and calm. The birds were in high gear for the mating season-lots of red-wing blackbird trills and Canada geese going wild. We then went downtown for Josh's birthday-unbelievable crowds due to St. Patrick's Day. Steve thought I should have a chosen a different day to have him.
Wednesday, March 17, 2010
Josh at 9 holding Naomi the newborn
Tuesday, March 16, 2010
Dakota checking out Daniel
Dakota checking out Spud. Spud is 14.25 years oldOliver spent the majority of his visit yesterday taking a nap so he missed Dakota's visit. The visit was cut short when Naomi said she had to go and buy a cage for Dakota. Somewhere in my or Josh's house, is a perfectly good pug cage but Naomi thinks her doggie deserves a new, never used cage. Spud really never needed to be crated. He never went through that chewing stage, probably because he still seems to have baby teeth. If we were gone, he just went into hibernation mode. But Naomi demanding a new cage for Dakota sparked something in Shanna on how Naomi will have to get used to having used things given the choices she's made and how she will need to know that now she is a poor person doomed to welfare. Naomi said she didn't come over to be lectured and left. There is no use in shaming her. She is in fantasy land and I am trying to slowly bring her to reality. I am propping her up but the minute I let go, she falls. It is all very tiring. After she left, we played the Blame Game-my favorite-a game no one truly ever wins. Everyone is a loser. But the fingers were pointed at me. Among my many crimes, having Naomi live in a city in which she could meet people of different cultures. As I said, there are no winners in this game and I made no effort to defend myself. Naomi later was pissed that I made no effort to defend her either. A bad mother no matter what I do. I guess I could counteract and point out what happens when someone doesn't feel love at home, they try to find it somewhere else with bad results.
Monday, March 15, 2010
An adult chug from the internet
Dakota sleeping. Hopefully she doesn't outgrow this bed
Sunday, March 14, 2010
No you can't shave your legs. The blonde hairs will turn black!
If you swim within 2 hours of eating,you'll get cramps and die!
If you wash your hair while you have a cold, you will get pneumonia!
That last myth was especially embarassing to live with. At eleven, I had all the signs of early puberty: a growth spurt that caused me to tower over everyone and extremely overactive oil glands. Unless I washed my hair daily, it would hang in disgusting greasy ropes. We had a X-mas concert that year and my friends and I were chosed to sing in a trio-"WinterWonderland" singing harmony. That was difficult as I kept wanting to sing the soprano part-the melody. There were a few lines I got to sing by myself. I used to have a reasonable voice but puberty has since reduced my range to just a few notes. But then, I still could sing despite a minor cold. I was forbidden to wash my hair due to the cold and the threat of pneumonia. After a few days, my hair left grease stains on everything it touched. On the night of the concert, I showed up with my very greasy hair. This did not go unnoticed or unremarked upon!!! I'd rather have had the pneumonia.
I thought about this yesterday as I ran with my cold in the rain and driving wind. I tried as much as possible to keep the wind at right angles. I should have worn a hat. At the end of my run, my hair was sopping wet and my skin red from the chill. All was fine after a hot shower. So far no signs of pneumonia. Despite running in the cold routinely, I do feel I get much less disease than most. My last cold was 6 years ago and as far as colds go, this one is very minor. My theory is that the elevated temperature kills off the potential pathogens. But I can't get too high and mighty: I had cancer.
No Naomi and the test is later today! Suffice it to say that it would be much, much easier to be the student than trying to turn her into one. Shanna and crew finally made it to Michigan after a drive that was much longer than mine. They will come over later in the day as will my other kids.
Saturday, March 13, 2010
The Hungry Moms
Recently Anthony Bourdain featured the cuisine of the Rust Belt, which included Detroit. I expected some mention of Vernors, Faygo, bumpy cake and Coney Islands but no, just the food of various immigrant communities including that of the Arabic, Belgian and Polish. One contribution of the Polish community I learned was that vile substance I had as a child known as 'city chicken'. This was miscellaneous pieces of tough veal on skewers rolled in cornmeal. It had a funky, musty taste. Chicken used to be much more expensive than veal. It didn't taste like chicken.
Other foods of my childhood that I stay away from:
Mexicorn and creamed corn in a can
Canned corned beef
Banquet pot pies
Frozen, breaded fish
Canned fruit cocktail
Frozen cream pies of any sort
Jello with various canned fruit suspended in it
Pudding from boxes
turkey legs at 19 cents a pound
Bad childhood food I still like:
Chicken rice-a -roni
Orange jello with carrots in it
Ambrosia although modified by me to be tastier
canned crescent rolls
3 can green bean casserole though I do use frozen green beans
Last night I cooked for the moms: the post-partum support group for moms of babies pushing 31 years. Although some of them call our group the Awesome Buddy Group, I refer to them as the "Hungry Moms" from that reggae classic whose lines include "A hungry mob is an angry mob. Them bellies full but we hungry..." When I first heard the song, I thought Marley said 'hungry mom'. Still I am not sure whether he says 'man' or mob'. Jamaican man=mon.
No rust-belt cuisine for my friends. I cooked 'for survivorship' as 3 out of the 5 of us are 'survivors'. Yogurt cheese with a smoky chipolte sauce and tuna cakes for appetizers. Carrot curry coconut soup and sesame sole for a main course. A lemon, dill yogurt sauce also was prepared to put on the fish . My friends brought spinach pies, shrimp, a garbanzo avocado salad, dessert(tasty raspberry tart) and lots of wine to supplement. Absolutely none of those things would I have had as a child although my mom did make a nice raspberry pie.
It was nice.
We've received better mail recently. An E-Z pass transponder and news that our insurance has decided to consider UM an in-service provider. No more trips to the lab in Livonia when there are UM labs right down the street. Less out-of-pocket expenses. Who-hoo!
Michigan is surrounded by states with tollroads so few of us have transponders. When I was trying to beat the clock driving like a maniac to Boston during Shanna's first labor, not having to stop for the many tollbooths would have been a blessing and probably, less costly. Also I didn't have full use of my left arm then so it was a pain fumbling for money and then extending my right arm out. But no more of that with my brand-new transponder!
Although it is warmer than usual, it is raining now. I ran in it, cold with the wind and hard to see with the drops on my glasses. Shanna and family should be at her in-laws now but I won't see them until our 'family dinner' tomorrow. Hope they like left-over sole.
Friday, March 12, 2010
I follow several blogs including one from Renee in Canada who had Stage 4 inflammatory breast cancer (IBC). This beast is either diagnosed as stage 3 or 4 and is the most deadly form of BC. It does not form lumps. Rather it blocks the lymph channels causing the whole breast to painfully swell. It spreads quickly. In her case, along with several other sites, it went to her stomach which is very unusual. Renee's blogs were works of art and poetry alternating with practical tips on dealing with ones looming death (an example is planning her funeral: http://circlingmyhead.blogspot.com/search/label/funeral)
She died earlier this week. The above picture she selected for her final post. She was comforted by angels and now she is one.
Also dead this week due to stage 4 ovarian cancer was the wife of Steve's former boss. I ran into Kavita this summer at my cooking class. She was very much hoping that changing her diet would extend her life. I knew her husband way back when I worked in Detroit. Theirs was an arranged marriage, which fascinated me and of course I questioned him how one could marry someone that ones family had selected for him . He said that the low divorce rate amongst such marriages was proof that it was a better strategy than the "American Way". After meeting her, she seemed like a woman that no one would take advantage of-very strong.
From the Wellness Community lending library this week, I scanned through the Nanny's and Elizabeth Edward's cancer stories. Quite a contrast in styles! The former had early stage uterine cancer and spares no detail from her bowel movements to graphic descriptions of her post-surgical sexual encounters. TMI indeed. Ms. Edwards provides little information other than the terror of finding a 'large lump' during her husband's campaign. As for treatment, she received chemo and radiation. She said that she had every side effect imaginable but would not go into detail other than to say the only side effect her young children was fascinated by was the hair loss. She does discuss the death of her 16 year old child and the rigors of being on the campaign trail. One thing that very much bothered her was a man who for a while stood along her path on many occasions carrying a sign that said "Fatso". This upset her. This biography was written before her husband's shenanigans came to light and also before her cancer returned to her bones.
My Canadian 'famille' must have returned from Tunisia by now. They had another sister that I must have met but forgot. She died instantly in a car accident in 1989. Shortly before her death, we had visited Montreal. While Steve and I were at Le Parc de Ski du Fond (cross country ski park-Steve hated that), this sister and Claire came over to play cards with Shanna and Josh who were left behind at Jeannette's condo. I had told Shanna about the death way back when but then completely forgot about it. Shanna remembered though. She said it was her first brush with death. One day she is playing cards with this friendly French lady and then she is dead. Later that year, she had another, much bigger brush with death when her beloved Grandpa Joe died of stomach cancer.
Thirty-five years ago, Jeannette, my step-grandmother was diagnosed with ovarian cancer-a death sentence in those days. She survived.
I had bad dreams last night with Oliver walking along the edge of a cliff and no one stopping him. Shanna and her family will leave Boston sometime today on their way to Michigan. Long drives make me nervous but at least ice won't be in their way. I have been told though there will be no equal sharing this time of grandchildren. Our side used up our share already last week and the week before in NY. This trip is to visit a 100+ year old relative that is losing his memory before he forgets them completely.
Thursday, March 11, 2010
This was sent by my fellow Italian student Jeanette
Yesterday was my "Cooking for Survivorship" class at the Wellness Community. It is getting more popular as so many want to avoid a recurrence. So the foods we prepare are high in anti-oxidants, low in fat, no meat, no white sugar or flour. Have I adopted this diet at home as I should? Not really but baby steps..baby steps. I will make some of the recipes for the moms tomorrow. There is usually one or two new people there so we all introduce ourselves with a summary of what we've gone through. I mentionned that my latest challenge is the teenage pregnancy and that the shock of it was nearly that of hearing about my breast cancer. Then I felt bad as how is a new grandchild anything like a tumor. One woman came up to me later and said that someday I will look on the baby as a blessing. Maybe. Naomi asked me earlier in the day, Aren't you excited for me? I know what she wanted me to say but I just couldn't. I know. I need an attitude adjustment. I'm no longer moping about it and am trying to prepare Naomi as much as possible. I have to be more positive about this baby. A woman in our neighborhood, Josh's best girl buddy for many years, recently had a baby with a minor disability. Her mom blamed her for working too hard causing the baby to be 'defective.' Suffice it to say, grandma won't be seeing that baby anytime soon until a big, big apology is made.
Our new insurance covers nothing for my visits to my cancer team until I rack up more bills. I will be seen every 3 months for at least another year. I almost hate getting mail as it is bills, bills, bills but I did get a beautiful card from Lesa of LittleLifePreservers I will scan.
It is spring for a while here and I was able to run in the cool air in shorts no longer worrying about ice patches. I basked in the sun later on my patio. A lazy day. I am fighting a cold but I still can run.
Wednesday, March 10, 2010
So my last infusion left me with a throbbing purple lump on top of my left wrist which slowly became smaller and less painful as time went by.Now it is a faint purple line. What bothered me the most about Taxol is the neuralgia it caused especially 3 days after dosing. All my muscles, especially around my hips and trunk would be painful to pressure meaning I couldn't sit, lie down without being in pain. It was neuropathic pain which does not respond to the usual pain killers. One of its minor side effects is damage to the nails. Many lose their nails to it. I was left with white ridges and brown stains.It felt that my nails could fall off at any time but I just lost 2 toenails. But of the 3 poisons I had injected in me, from what I read Taxol was probably the most useful in preventing recurrences. The jury is still out on what the Red Devil did for me.
I get updates from the Susan Love Foundation about 'breaking news'. The aspirin a day cutting recurrences by 50% update was in my in-box the other day. This is the same number I was given for what chemo would do for me. Certainly gobbling aspirin would have been easier. But at this point, it is not being recommended until further study. Why the hell not? Yesterday I read a report in the 'medical breakthrough' section of the Wall Street Journal that men taking NSAIDs regularly were more likely to have hearing loss-something about changes in blood flow to their cochleae. No mention about what happens to women. But less heart attacks and strokes and lower recurrence of cancer versus possible hearing loss and stomach bleeding...you make the call. For the record, my stomach is still shredded by the Red Devil, which along with the Cytoxan, has been known to cause deafness (along with heart damage, more cancer,..)
So a year later, I am alive with a full set of healthy nails, sweat glands, oil glands, and normal blood values. I am no longer puffy due to steroids. I still weigh too much-how much no one knows, most of all me. I do have muscle tone though and can run for a long time without gasping for air. I now fret that my hair is growing too fast (expensive to keep dyeing it) and its chemo curl is relaxing into chemo waves. I still have right arm pain that is probably due to treatment. Yesterday , our warmest day ever in the past 4 or 5 months, Naomi and I walked at glacial pace to the playground (along with her (thankfully) clearing infection, she has now developed back pains from all the sitting in one position) to bask in the sun. I used the various equipment there to stretch out my frozen joints, it seems to help. We returned home for more studying (Tuesday is intensive study day) and to watch one of those birthing shows on TLC. Yesterday was the silliest birth yet. The crazoid mom insisted that her 4 year old watch the whole proceedings done without any epidural. While the mom screamed in pain, the child stuck his hand in her mouth to shut her up. Naomi thought that was funny. Meanwhile, the husband and grandmother stood uselessly to the side. Shanna was in the birthing room when I had Naomi but she was almost 12 and not especially squeamish. I had more or less given birth quietly without drugs for the older two. I thought that a third birth would be easy-peazy especially as by then, I was a marathon runner who I thought could push herself through anything. But even so, I know circumstances are different with every birth and I didn't want to scare her childless so I told her that if I said to leave, she'd leave and wait to be called back in. My waters ruptured 2 weeks early and the midwives told me to wait for 3 days before an induction as most likely I would go into labor. After dripping around for 2 whole days, I couldn't take it any longer and at the first sign of a contraction, I demanded to be admitted. The induction caused me to go from no labor to end-stage labor in just a few minutes. After the first contraction, I was demanding relief (this was after how I was bragging just a few minutes early how I had a 10 lb baby-Josh- with no drugs). I sucked on laughing gas, which was heaven sent. Naomi was born after 1.5 hours total from start to finish. Sometimes I wonder if the rapid delivery somehow caused her problems though usually, physical problems are the result and she was unbelievably athletic. But maybe that frontal lobe was deprived from oxygen for a few seconds..Anyways Shanna was not traumatized and went on to have her own 2 babies.
And now Naomi, the baby, is pregnant.
Tuesday, March 9, 2010
Monday, March 8, 2010
In Ghana, 60% of BC is TNBC compared to 10-15% here. As Ghana is a west coast equatorial nation, it is likely that many African Americans share the same ancestry as the Ghanians. A researcher at UM, Lisa Newman is currently in Ghana looking for the gene that is possibly causing this. It isn't BRAC1, the defect that causes many cases of TNBC, but an unknown one. What could be done with this knowledge? At the very least, women could be told that they are at risk. At best, if a particular antigen was produced, a vaccine or a drug targeting it could be developed. The inheritance patterns could be established though having BC in other parts of the world is so shameful, many won't admit to it.
TNBC (triple negative)has completely different risk factors than the more prevalent and more studied estrogen positive breast cancer. It is a different disease altogether except it is found in the breasts. And there seems that not all TNBC is the same. Certainly the kind that BRAC1 ladies get and the young African Americans get seems more aggressive. I am selfishly holding on to the hope that the few older white women who get it have a more benign course. I have no statistics to back me up, just alot of anecdotal evidence. One reason that we are more likely to survive is that we are in the age group having mammograms; 30 year olds aren't looking for BC in general and mammograms do them little good.
Also in the obituaries last week, a former softball teammate of Naomi's of heart transplant complications. Naomi doesn't remember her but only the girl's father who coached their team to keep an eye on his then eight year old daughter.She was 19.
While we were in Boston, Naomi spent much of her time connected to her laptop. A former friend contacted her through Facebook. I referred to this girl's family at the time as the Trials of Job family. Both the little girl and her father shared the same heart defect and needed heart transplants. The father had one but was rejecting his heart as they desperately looked for a new one. The little girl, then 8, was doing all right for the moment with her heart but had such a list of things she couldn't do that it made me very nervous when she was over, which was often. I thought any moment this girl could go into heart failure under my watch. But I really couldn't say no to her or her family because at the time, the mom had a brain tumor and couldn't drive due to seizures. Geez!!! Ten years later, the girl and her dad are fine though I would not be able to recognize her. The mom however died 4 years ago.
It is a sunny day here in Michigan. The 2 feet of snow we had is slowly melting but I can see some of my spring flowers poking through. I went for a long run yesterday wearing shorts basking in the sunshine. As I had run in Boston before our big drive Saturday, I am tired. Back to the Y for me even though the weather is especially nice today. But it will be nice for a while..hope the winter is over.
Yesterday was Julia's (my daughter-in-law) birthday and we went out to dinner with her and Josh. I noticed she had wine with her dinner (I know what this means..sigh). But it was fun catching up with them. His friend the Olympian, came home with lots of stories. Later I tried to watch the Oscars but fell asleep.
Sunday, March 7, 2010
We are finally home after the grueling 13 hour drive with Naomi's throbbing music still resonating in my head. When we were not studying microbiology, we took turns listening to 'our' music.The roads were clear and sunny but Canadian Customs was a bitch. Outside of Buffalo is an electronic billboard with estimated times for the various crossings: the Lewiston crossing (one that the Tom-Tom suggests) was 60 minutes plus vs the Rainbow crossing (0-30 minutes which turned into 45 minutes due to me guessing the wrong lane). There is a 3rd crossing but it flashed too quickly for its abbreviations to make sense to me. Everytime I see the name "Rainbow Bridge", I think of that sad poem people send you when your dog dies saying how happy your doggy is on his side of the Rainbow Bridge happily cavorting painfree now that he is dead. But with all the mist kicked up by the falls and sunlight, rainbow spottings from this bridge are quite frequent and thus the name. Note to self: if you are the only one in the car capable of reading a map, don't be driving when you have to make a change of plans or memorize all possible routes ahead of time. I think I know the path now. Another issue was trying to cajole Naomi to move during our stops so she wouldn't develop thrombophlebitis or a bladder infection from avoiding peeing. She still has an infection despite treatment. Her own OB was useless but Shanna's friend the OB sent in a script for us. Lots of moaning the entire week with her telling the both of us that we don't know what pain is. Oh I think we do and it has red hair. She didn't want to hear how the second trimester is the easy one-wait until the third if she wants misery and how at this time while pregnant with her and being 19 years older, I was running 5 miles a day whereas she can't walk 50 feet feet in less than 2 minutes.
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