Wednesday, December 31, 2008

Chemo brain redux

Part of my fear surrounding chemo is losing my cognitive abilities (aside from losing heart function and the major hit to my appearance, which had suffered enough in recent years already). My friend S had gone through a much tougher regime than myself. I have been seeing her regularly since one year out from treatment and to me, she still is the sharp-witted lady she always was, articulately stating her theories of everything. When I told her about the chemo-brain study I was enrolled in and how and what they were measuring, it just made her mad, really mad. They don't get it-that's not what chemobrain is! What she notices is that one train of thought quickly is derailed into another train of thought. She will intend to write down one thing (she is now a novelist) and finds out that she has written gibberish in its place. M also has gone through chemo-some very tough to tolerate drugs, different from Sandy's and my regime says that chemobrain still is a problem. In her case, she thinks it has given her ADD. She has many things to juggle and more often now, she finds things from slipped off her mental to-do list. She has tried the traditional treatments for ADD to no avail.

So for me, lots of self-testing. So far I am finding I am making more careless mistakes in my Japanese logic puzzles especially in Killer Sudoku. Makes me feel bad. However, I am completing crossword puzzles at about the same rate. I completed the last Sunday NY Times in less than an hour but it seemed to be an easy one. My dysphasia has worsen. This I seemed to have inherited from my mom who always had a severe fluency problem, way, way worse than mine and her Alzheimer's Disease quickly destroyed whatever speech she had while she maintained other abilities (like dismantling toilets). Sometimes the articulate Sue shows up to the plate capable of delivering professional talks at a mile a minute, but other times I stumble over simple sentences mispronouncing easy words sounding like a complete idiot. Well this now is happening more than ever much to my embarrassment and annoyance. I find I am writing alot more stuff in this that doesn't make sense. I do self edit but alot gets by my not so sharp eyes.

As for being able to pronounce words as some indication of intelligence or ability, it reminded me of a really awful argument I lost with some shitty battle axe of a teacher Shanna had in 4th grade.
Shanna was an early reader and had escaped all of my fluency disorders thankfully (poor Josh wasn't so lucky). She was always placed in the highest reading group until this bitch came along. I immediately demanded to know her reasoning. It turns out her test for reading ability was for Shanna to pronounce a list of words until she stumbled. Shanna mispronounced 'statistics' a seventh grade word so she was downgraded to a much lower group than she had been in 3rd grade. This is a word that I had mispronounced myself in the not so distant past-I who had high grades in college English, tested very high in verbal ability even though I am primarily a scientist, who writes professional papers, does she think that I read only at a seventh grade level or below? How does she test the foreign born? The bitch was unmoved. I should have had Shanna immediately removed from her class as we would never be able to see eye to eye. She especially seemed to dislike 'pretty girls' and Shayna Shanna was (is) quite pretty. I did ensure that Josh would never be in her evil, incompetent clutches. She was thankfully gone by the time Naomi came along but Naomi would have done well in her limited test. Naomi could easily pronounce and spell difficult words even though she has no idea what they mean. She has not inherited this particular trait of mine but does have a sizable learning disability that is crippling.

J visited last night. Both of us were too tired for a movie.She is a former nurse and immediately noticed the bandages on my hand. I can't believe they gave you Adriamycin through your hand vein. I had to argue for it. You would have lost that argument with me.

Tuesday, December 30, 2008

A decent wig at last!!!!

I went to the ACS 'Look good..Feel better' program yesterday, which I highly recommend to my cancer buddies. Lots of free high end make-up: Lancome, Chanel, Bobbi Brown, Aveda, etc. Naomi had a field day rooting through my bag and begging for discards. I really never spent much time with make-up-I have mascara and lipstick. I used to wear foundation until I couldn't get the kind I wanted anymore. But I was taught their tricks. I put on colors that I never would have considered but they looked OK. I wish I took a picture of myself when I was finished. But the best part, and this wasn't officially part of the ACS program, was that I tapped into Chelsea Hospital's Wig Program, which is way, way better than UM's. I got a beautiful blonde page boy that I already received lots of compliments on. Free. Once I feel better, I will have pictures taken. And the wig fits. For some reason, the wig place had mailed me a petite, which just sort fits. Finding this wig made me so happy.

Cycle 3, Day 1. I hate infusion days. I go in feeling almost normal only to be poisoned. Today was an especially annoying one as I had to fit in a mammogram too-high magnification digital one- to document all the microcalcs. Numerous long exposure views. Then I had to wait for more than an hour for a radiologist to look at it meanwhile missing my onc and infusion appts. There was a woman there waiting to see what her 15 cm mass was. Don't you mean 1.5 cm? (what my tumor was originally until they started adding on the tendrils) No 15 cm, 5.5 inches. Now that does sound big. But for me, no more mammograms until the 6 month after treatment one-sometime in September or October. They saw some microcalcs but said they looked benign. My labs looked good. My WBC actually went up though the RBC had fallen to the level of an average premenopausal woman. I do like Dr. Henry. She patiently deals with all of my concerns though she doesn't always give me the answers I want to hear as in 'no, you can't do chemo and radiation at the same time' 'no you can't automatically do the 3 week Canadian study (cutting my radiation in half-if it's good enough for the Canadians, it's good enough for me) and no, you can't skip radiation because it IS important though I can't give you the exact numbers. I also asked details about the outcome predictor program-whether the her2 positives were lumped together with the triple negatives. Yes they were and still are. Herceptin has been around for 10 years but initially only used for metastatic cancer. Since 2004 or so, it has been used in early breast cancer for the Her2 positives. Some of these early positives were actually negatives-they used an older test that wasn't very accurate but these 'true negatives' got better too. The point of my rambling is this: the scary long term survival numbers are made even scarier by including the Her2 positives that were undertreated in their day. I may have a better chance of surviving than what was predicted.
Infusion took forever. I want the efficient lady I had last time. Plus we got in an argument straight off as she wanted to use some vein on the underbelly of my arm. No, just use my hand veins, they're good. You used them last time. Not me. I meant you in the plural. They had no problems. That isn't protocol-vesicants are Never to be used in the hand veins. Please just do it.

Yucky taste in the mouth I tried to counteract by sucking on popsicles during the Red Devil infusion. So I am all spacy and tired from all the extras they give me plus I am getting hot flashes every few minutes. It must be related to the chemo as this happened last time. I might go out to a movie with Jo tonight if I am not too tired. I honestly don't feel too bad but I am not normal. Meanwhile it is nice and sunny-but my balance if off for either a walk or run. One more Red Devil to go!!! Taxol should (better) be easier.

Monday, December 29, 2008

Waiting for Looking good, feeling pretty

Or is it Looking Pretty, feeling good. I forgot but yeah, I'm waiting for all of that. It's a class that the American Cancer Society puts on and we get all sorts of make-up-$300 worth I've been told. I think my personal supplies can be replaced for under $25. I also will learn scarf folding tricks and how to make a turban out of a T-shirt as the very enthusiastic lady yesterday told me. It's held all the way in Chelsea but I would have had to wait another month for it to be here.A friend offered to take me but the contrast between her (very pretty) and us would have been too much. Bad enough that in the last few years that some people have assumed she was my daughter even though she is a few months OLDER than me. Not even my own kids are ever considered to be 'my kids' except in some rare cases like Naomi being sometimes the only white girl out on the court for Huron and some opposing team parent will turn to me-That Redhead, she must be yours. Good guess Sherlock. (I didn't say that-I really am not so snotty). Another time I was biking across Michigan with 4 adolescent boys in tow stopped for our umpteenth snack for the day (it was impossible to ever pass a food store with these boys) and someone asked if all those boys were mine. For the week, they are but actually only one of them is my son. Really. Which one? Guess. Josh was the last guess.

Chemo tomorrow so I tried to get a last run in. Tenth of a marathon. It is sunny but cold and I was more tired than the other 2 days but I did it. Shanna is safely back in Boston. One mom came over for a pleasant and entertaining visit last night. Teri wrote me a very touching e-mail this morning. Nice phone call from another of the moms last night. Found through the web another TNBC person my age who actually lives in Ann Arbor and is only a month ahead of me in treatment that I haven't been able to contact yet but I will try harder. Naomi does not appear to be injured any more.

Sunday, December 28, 2008

Have a Merry Chemo X-mas!

Oliver's curl
The whole family on X-mas. Notice the "lighten-up" wig
Also I posted a picture of Shanna lighting the shammas candle in my post on X-mas day.
So Shanna et al. are on their way to Boston after a very late start. If they get in before midnight, it will be a miracle. Fortunately they will have ice free driving so I won't worry so much.
Childcare is exhausting! We couldn't get Oliver down until nearly 11. When he is crabby, he has this dangerous habit of flinging his body backwards without any regard to what may be behind him.
The temp has dropped 30 degrees and now we have gale force wind. Still I will try for at least a mini-run today while the Red Devil is at a low level.
One positive: my rib stopped hurting. Shortly after surgery, I noticed that my rib right under the Bad Breast ached. I don't remember doing anything to hurt it otherwise. Maybe they hurt it somehow during the surgery but my paranoid mind thinks immediately of bone mets-this is how Elizabeth E. discovered her reoccurance-achy rib. But no more pain there.
I seemed to have picked up a new reader yesterday who googled the phrase 'triple negative-will I die?' Welcome Ms. Alabama, you probably won't but it is a scary club to belong to.

Saturday, December 27, 2008

Up and running

La mia amica Nancy sent me this. I showed it to Naomi, Ms. Literal. She said, so what? it is just some women sitting on rubber balls.

It is 'unseasonably' warm today. The rain stopped, the sun came out and I hauled my flabby, hairless carcass out for the first time in almost 2 weeks and went for a run. I felt good-I was finally doing something positive. Most of the time this cycle I physically could not run except for the last 2 days and then the roads were impassable-yesterday's glare ice for instance. I am only feeling queasy some of the day now though the insides of my mouth are very sensitive. I stupidly used regular mouthwash-ow,ow,ow. My hair stopped falling out. What is left is very sparse inch long very white coarse hair. All of the non-white hair is gone. I guess I'll have 2 more good days until Tuesday-Cycle 3.

Yesterday was 'my day' with Oliver and Shanna except for a period that they went bowling with Ramy's dad. Naomi went with them and I guess I could have gone too but I hate bowling. We went out to lunch so Shanna and I could have arroz con mariscos. Later we made dinner. Shanna at one point said something that she could never have her favorite foods due to my peculiar food aversions so I made her banana pudding from scratch-bananas being on my list. We went to lunch today at Josh's house though somehow we ended up bringing the lunch. Julia was working.
They are all gone now though they will drop Oliver off later with us while they go bar hopping.

Oliver is very charming. Last night right before his bedtime so he was a little crabby, I told him that dreaded word NO and his little lower lip started to tremble and he looked so miserable but cute so I laughed at him and he laughed back but remembered he was mad at me and made the sad face again. Again I laughed and so did he. Naomi was trying to film it but as soon as he sees a camera, he looks straight into it and smiles.

Friday, December 26, 2008


The other day I was reading the hunting column in the Free Press. A bad idea because the guy usually makes me mad and I really have no interest in hunting. But the subject was albino deer-seems like they are popping out all over. But this guy is on a personal mission to kill everyone he sees. He smugly writes how he is improving the herd as the albino gene is clearly defective in his inane eyes. As proof of his progress, there was a picture of a whole pile of his kill. The deer weren't even true albinos-they just had white spots on them. I was tempted to write him on how his white skin was probably due to a similar 'defective' mutation thousands of years ago but I have enough on my plate without dealing with hunters, alot of them taking the opposite tact-killing the most fit buck with the most points. Muy macho! So much for improving the herd. But with the deer herd growing tenfold in the last ten years in SE Michigan and my drives to Josh's or Brenda's or now, anywhere becoming increasingly hazardful due to deer popping out all over the place, I guess I can't complain too much about hunters.

So Shanna's family is now here. Yay! But an issue here is the temperature of the house. Steve likes to keep it cool, which in general I agree with but maybe not with a baby in the house. The kids took a child raising class before Oliver's birth. The Northern-European background instructor had said that 68 deg is warm enough for babies. Ramy was mad that she was culturally insensitive ignoring the fact that many in the class came from places where it is never that cold and their babies would have difficulty adapting to such coldness. Nevermind that he has spent most of his life here in Michigan. And Steve's, the temperature czar, ancestors came from the Middle East though they had 2000 years to adapt to coldness-before coming here, they found themselves in Northern Poland/Russia. Hopefully Oliver's quarter European genes will help him survive here. They came back in the middle of the night and I woke Steve up. Get-up! You have to get the house warm! Now! He got up to raise the temp to 58 deg ( I wasn't specific enough) but not warm enough for them.

This adapting to cold reminded me of my Nigerian co-worker's story. Communist Romania was offering free medical school educations for Nigerians for whatever reason. He decided to take them up on it and as a 17 year old, found himself there in the dead of winter, in the worst winter on record-he checked-there without a coat. At the last minute, his aunt had taken back the one she had offered him. Wasn't it a women's coat? It was a coat, we aren't as picky as you Americans. His cousin was already there to meet him but he was very cold waiting for him. They had to take a bus to their final destination but stopped at a village to have lunch. Soon they were surrounded by villagers who never saw Black people before apparently. Finally his cousin got up and said in Romanian "Alright, show's over. Mind your own business and leave us alone." They were shocked. But he had to make many adaptations while there. New language for one though fortunately Romanian is a romance language (surrounded by much more difficult language speaking countries) and he knew some French. But the cold was a hard one. And he ended up being expelled soon due to the fall of Communism.

A few years ago I took Naomi to the Shedd Aquarium in Chicago where they had an albino walrus. Apparently it had escaped the Free Press writer's sharp shooting. It was very strange looking but now, I look just like it minus the tusks: pink, bald and puffy.

Thursday, December 25, 2008

Merry Xmas from Chemoland

When I had hair-X-mas 12 years ago. The kids are 5, 14, and 17. Spud the pug is only 1. He turned 13 yesterday-my smelly, deaf, geezer pug.

We are awaiting Shanna's family for X-mas to begin. Probably a long wait. Still sad about the time division thing and the attempt to make things 'equal'. It would be more equal if the three other households I am sharing her with were facing a deadly disease and dealing with humiliating, painful, energy-sucking chemo. Plus most of the time, when she is at one household, at least one other household is present. It's sad that I have the short end of the stick because Ramy's parents are divorced. Plus his sister somehow gets an equal share. But our share begins late tonight with just one evening away with his mother. Both his mother and sister gave me the generic-if there's anything I could do. Well I now have a suggestion...share.

Not very Christmasy, huh?

Shanna and Oliver were over for 1 hour yesterday. He is of course, cute and I had looked forward to seeing him so much as one bright spot during chemo. But a very tiny spot.

Brenda stopped over after work with some very tasty goodies and better yet, good company. Jan came over later despite being warned that I would watch"It's a Wonderful Life", which she doesn't like but she toughed it out.

That Dante is back just as I feared but I was hoping he'd wait until after X-mas. But Naomi is happy, for the moment.

It was warm yesterday-41 deg but very slushy and windy. I tried to take a walk to try to slow down my fitness decline but it was so slippery and wet. Already I am becoming winded. It is true that I could barely move right after I broke my arm because for awhile, any wrong move would result in scorching pain but I wasn't winded after 3 weeks of inactivity. This chemo must be doing something really nasty. I was running well only 10 days ago.

And the hair. I had cut it down to about an inch and a half yesterday. Still the remaining hairs managed to form 3 distinct knots that were impossible to run a comb through. More cutting. Just a few tiny hairs remain. And I noticed this morning for the first time, my head isn't the only place is bald. My arms were always covered with dense, fine blonde hair. Gone except a little strip on my left forearm. Chemo patients are warned not to shave as cuts could start impossible to stop bleeding episodes and infection possibilities-though my platelets are fine. So I was starting to get a little hairy. But I looked today-no armpit hair whatsoever. Still some on my legs but it is getting pretty sparse. Someone had written that another area lose's hair too-inside of the nose. So if your nose starts to run, nothing to slow it down. Still have my nose hairs though-along with eyebrows and eyelashes. The latter I want to keep as long as possible. I go to my 'beauty' class Monday but it is really a challenge not to feel like a bloated mutant.

Wednesday, December 24, 2008

Chemo dreams

The picture Naomi got yesterday. Note the bruises though her make-up covers her black eye. Her teammate Jasmine did her hair. For some reason, her shorts are 2XL-should fit a 250 lb man. Despite all the pins, they still fall down.

Naomi is not a happy camper. She's injured, has bad cramps, and her boyfriend left her. The last 2 events I am relieved about. Not that I get any joy out of her moaning around-though motrin should take care of that but it means another month of not being pregnant (though she insists she does nothing that would make her that way-EVER) The boyfriend sounded more trouble than he's worth, which isn't much. But he'll probably be back after X-mas is gone so he doesn't have to buy a present. Her back hurts but after today, they have a break until New Year's Eve. And today, it's just a team holiday lunch.

So I have strange dreams. I flit in and out of character. Last night I was in and out of a murderer's mind. At one point, I was the murderer, which is how I knew who his next victim would be, which would be me. My only defense was to scream like mad and flail around when he made his move, which I did waking Steve up. I didn't want to go to sleep in case he was successful in his next attempt.

And chemo hair. Somehow my formerly soft, silky hair has taken the texture of steel wool. The remaining strands irritate my scalp, which is now quite visible. I wear a cap to contain the falling strands but still some escape, to get in my eyes and food. I had to cut more off yesterday as it now tangles even though it was only 2 inches long-my real hair rarely tangles. But I am still not shaving it-I think it would hurt my scalp. Suffice it to say, looking in the mirror is just so depressing.

The news from Cancerworld: Lance Armstrong has fathered a baby naturally. The day before he was to start chemo, it was pointed out to him that he probably would never be able to father a child unless he start banking sperm NOW. He went into great detail in his autobiography how difficult that experience was-he really was not in the mood. And when he finally was able to produce something, they said something about low quantity and quality. And his wife had to go through hell for the in vitro fertilization, which eventually resulted in 3 kids. But apparently his remaining boy has made a comeback though the mom must be his hundredth woman since the first wife. Well good for him.

Shanna and Oliver finally came over, which was good but she seemed sad. They will stop by today at some point but won't stay with us until late X-mas night. Brenda will stop by too and later maybe Jan.

Tuesday, December 23, 2008

Waiting for the abattoir..

The above line is from one of my favorite movies "Sideways" in which the hero is having a pity party because nothing is going right and noone understands him. He is bright but it just distances him from everyone else and he is thinking that maybe life is just waiting for the abattoir (slaughterhouse). Of course his friend has no idea what he is saying most of the time but has plenty of solutions for his funk.

So nights are the worst where I wake up and think. Sometimes I read instead. I've been going through Chicken Soup for the Cancer Patient. 100+ little vignettes that all go like this: person gets cancer with a very poor prognosis and feels sorry for themselves and makes themselves more miserable. At some point, the patient figures out he has to stop and smell the roses and decides to make his remaining last 6 months the best. While he is enjoying life, somehow the cancer just mysteriously disappears. How uplifting!

But as usual, I am missing the point and getting another message. I was always missing the point of Biblical Parables. My favorite was that of the ten brides: 5 were wise and 5 were foolish. They were all waiting for the groom (only one groom for the ten of them-so much for the one man/one woman "Christian" ideal) and it wasn't clear when he was going to show up (?). So the foolish ones burned through their oil and begged in vain for the wise ones to share theirs. The wise ones were ready for the groom and the foolish SOL, which I guess meant-no nookie tonight. The point is that you always have to be ready for the Lord as you 'know not the hour he cometh.' But I thought that those wise ones were supposed to be sharing and their selfish behavior was being rewarded. In Strasbourg, the main portal to the Cathedral has the whole story carved into its red sandstone. Not only were the 5 foolish, they were ugly too and not smiling.

J&J made it safely to Maryland and are skiing today. It will be 50 deg there tomorrow. Shanna and Oliver will come here soon. I don't feel too bad, just a little queasy. I still have hair flying out all over.

Monday, December 22, 2008

The Shammas candle

Shanna ligting the shammas candle. Spud in the background

Recently a Korean co-worker stared at Shanna's nametag admiring its alliteration no doubt and told her that she knew what her last name meant. Shanna was taken back a bit as the lady could barely speak English much less know Arabic or Hebrew. But both knew the Shammas candle was the 9th candle used to light the other candles in the menorah for Hanukkah. Her co-worker has a Jewish husband and was learning everything she could about his culture. It was the first night last night so we lit candles. They had gotten in 2:30 am after 17.5 hours of hellish driving. As I write, Josh and Julia (and Sunny) are on their way to Maryland. They wisely chose to head south first even though it's a bit longer but from what I can see, snow-free. The northern route includes the stormy for today Ohio Turnpike.

I felt less queasy yesterday though I started to gag after cleaning up after one of Spud's more frequent mishaps. I am just tired. I put on my new wig for our dinner. I am still losing hair but not to the point of having bald spots. So we had everyone together including precious Oliver who was his charming self. I was afraid he would scream in terror at the wig but after 10 weeks of not seeing me, it didn't make any difference to him. So he's quite a bit bigger and more co-ordinated. He was trying to dance to the music while crawling which was very cute. The older kids are finally getting along. There was a 6 year period in which they could not tolerate each other for a myriad of reasons. But both are reaching out so I am glad.

It is unbelievably cold here. The night before J&J had gone to a party thrown by a med school friend. In the corner of the room were some African people who were so small, Josh first assumed they were children. No they were Ghanaian med students here for a cultural exchange program. Josh's buddy had spent some time in Ghana. Josh went over to them to see how they were enjoying their experience. Of course everything here is an eye opening experience for them-all our fancy facilities, etc but the cold was something they were not enjoying.

But it was a nice dinner-Steve had done the majority of the work and was quite exhausted. All I made was gravy and suggestions.

But I won't be seeing Shanna and her family much-they won't stay here until Thursday night and will leave Sunday morning. I am very sad. I am not sure what is behind this decision but thinking about it puts me in a very bad place. 5 nights with his family and 3 here.

Sunday, December 21, 2008

The Wig is in

Oliver eating his mom's purse. Hopefully I will see him soon

So the "Lighten Up" in Honey Ginger finally showed up in size small. It barely fits. I still have some hair left so I am hoping it'll fit better when it's gone. Naomi's verdict-too short and poufy. She spends hours de-voluminizing her own hair. Somehow despite straight hair allegedly being a recessive trait and Steve and I both having straight hair theoretically dooming our children to straight hair also, two of the kids have curly hair. Not that they appreciate it. Josh gets his hair cut at the first sign of curls and Naomi has her straighteners. And my daughter-in-law, Julia, would have beautiful pale blonde curls if she didn't spend a half hour straighteing it.

There seems to be a local epidemic of teenage pregnancies here. The girl that Naomi went out with the other night is 5 months pregnant! Morgan seemed to be one of Naomi's more sensible friends-bright and beautiful. MTV had filmed their show "Made" 2 years ago here showcasing a neighborhood boy who wanted to be a fashion desginer. Morgan with her 6'2" willowly body was his principal model so she had her 30 seconds of fame. Naomi was able to rattle off quite a few others. Just the other day, Ty, the basketball captain/star said Damn Nay-maybe we should go and get pregnant so we could be trendy too. Ty, of course, has her eyes on the prize and would never get pregnant. Naomi on the other hand, needs to be watched.

Felt vaguely pukey most of yesterday. The Zofran seemed to help but made me sleepy. I was able to go for a half-hour walk with Steve just to get moving and get some fresh air. It is cold and slippery out. Shanna's family started the long trek out here late from Boston. Massachusetts was completely covered with snow. Worse they have all these no-salt zones in the Berkshires to keep their aquifers pure. Michigan on the other hand, is quite free with its salt-the epicenter of the 'rust-belt'. I remember driving very nervously through the Berkshires last year after Oliver was born. Very pretty but lots of climbs and turns. Nerve-racking when slippery. According to the weather channel, it would be smooth sailing once they hit the New York State line. I stopped calling them once they were halfway through. The earliest they could have made it was midnite and I assume they are exhausted. Hopefully Shanna will call as soon as she wakes up. Our family X-mas will be later today-the only day we'll all be in town. Shanna's family won't stay here until X-mas nite.

Saturday, December 20, 2008

Hair fall

Yesterday was a bad day. I felt weak and crappy most of the day. I did call the wig place. My wig was mailed out on the 17th, not the 12th as they previously said. Meanwhile the hair kept falling. I still had plenty to cover my head but everytime I would try to arrange it to look a little better, more would fall out. I finally tucked it under a cap that the Fiberguild ladies had donated and went off to Fran's tea in the deep snow. She had heard through the grapevine that I might have cancer but then she sees me running. Turns out another mom that generally comes to this was getting her first chemo that day for breast cancer. I don't know her well. She had once given Josh a ride somewhere and he was puzzled by some strange object attached to her dash. "Oh, that's to break the windows in case the car goes underwater."  Before she moved to the neighborhood, about 20 years ago 3 teenage girls from our neighborhood ended up in a retention pond trapped in a Taurus. Only one of them, the high school chem teacher's daughter, managed to claw her way out. The dead girls had babysat for some of my girlscouts so lots of sadness. But I will send that lady a note as it sounds like we are facing the same monster.
So surprise everyone, I have breast cancer thus the silly hat. Of course numerous stories of friends and relatives who had it and beat it come up. People were very supportive and lots of offer of 'help' if I ever need anything. It was OK. Lots of amusing gossip to keep us going and tasty treats. I kept nibbling on white bread tea sandwiches, which in the past I would have left alone but they were comforting. All of them know Josh, a 'wonderful' man, who turned out just fine despite his strange mom so maybe I did something right. Another lady there has been battling late stage ovarian cancer for 2 years gave me her insights. She has had a much bigger battle than I probably will have and still finds joy.
Fran lives on a boulevard, which the city cleared but piled up everything in the turn arounds so I got stuck for awhile. No gas in the car either. Most people were dropped off by their husbands. But Steve was tired from all the shoveling so I didn't ask him. Naomi wanted to drive all over the place with her inexperienced driver friends. I tried to limit them to a mile but I bet that was violated. Her friends seem to have no limits. If the storm in the east stops, Shanna's family will begin the long drive here today.
When I returned, I cut off long wads of hair leaving just an inch or two left. It of course looks crappy but noone is going to see it so don't even ask. It is just too hard on me.

Friday, December 19, 2008


It is snowing very hard. School was cancelled. At one point it looked like we were just on the edge of the storm and would miss it. Naomi had a paper due today that I don't think she finished and I was running out of energy to hound her so we were both nervously watching the Weather Channel. Shanna was supposed to start the big drive here today but that will start tomorrow weather permitting. It was sunny and calm yesterday so I did take a 2 mile walk. Still too slippery to run and now my balance is off. I feel faint alot now. I also can not have coffee any more. Snapple is my caffeine source now.

During the first round, I felt well enough alot of the time to forget for a few moments that I am a cancer patient. This hair business won't let me forget and my wig still isn't here. If I go to the X-mas tea later on today, I think I'll have enough hair left but it doesn't look very good. I know I should just have it all shaved off but I just can't.

Two of the moms came over last night to help decorate the tree. I have so many old ornaments-alot of them are falling apart and the lights need to be all replaced. But it looks good. Thank you so much for doing this when I know you are so busy with other things. I thought it would be so sad not to have a tree especially when it is the first X-mas that I have a grandchild. Of course he will be too young to remember it.

I knew the biggest battle in chemoland was trying to stay positive while feeling crummy. This cloud of falling hair is really making that difficult.

My former employer's huge research site will be sold to the University. No tax dollars there. It will allegedly bring in more jobs for scientists but I don't know how. Michigan is the epicenter of the Depression. Many, many struggling people. I just don't know how this can be fixed but giving Wall Street firms tax dollars so they could pay their execs big bonuses just really rankles me.

Thursday, December 18, 2008

If your man tests positive for pregnancy...

Yesterday I read Lance Armstrong's autobiography concerning his battle with testicular cancer. An interesting read. But one thing that testicular cancer has that TNBC does not is a clear marker-HCG the same hormone fetuses produce. Lance's tumors were producing more HCG than all the unborn babies in Texas combined. He did have alot of symptoms of early pregnancy but dismissed them and everything else until his cancer spread to his lungs and brain. He had little chance of survival but he did survive due to grueling chemo and excellent care. But his recovery was easy to measure following his HCG levels. If he worries between check-ups about reoccurances, all he would need to do is take a pregnancy test. And he is giving back to the cancer community through his LiveStong initiative. I noticed the other day, I could take a 12 week course at the Y and have a personal trainer to help me repair my body from the ravages of chemo through his foundation for free.

But no clear markers to tell you if your TNBC or any breast cancer has spread. Calcium levels go up when it is mounting an invasion in the bones but lots of false positives there. There are some minor markers but they don't tell much. Of course they can do all sorts of scans to find the tumors once they set up shop but once that happens, the tumors are real hard to get rid of.

Last week the oncologists had their big breast cancer conference in San Antonio and I've been reviewing the results from this when I can. I read about new drugs that slow down the mets 'significantly' and then read that it stopped the growth for 4 months vs 2 months. Well this might be statistically significant and a step in the right direction but we need more than that.

But there was something that looked promising: The MUC-1 vaccine. Mucin is an over-expressed surface protein in 90% of TNBC tumors. A research group has managed to make a vaccine targetting it. Ideally how this would work is this: you treat your early stage TNBC patient and then give her the MUC-1 vaccine. Her body then is stimulated to produce antibodies that will search and destroy anything-an errant TN tumor cell hopefully-that has the MUC-1 protein on it. End result: no METs and no deaths. Even better: skip the chemo and go for the vaccine once it is proven. So this vaccine goes into trial this January. As TNBC spreads so quickly, if it is going to spread, they should have the results soon.

As for men taking pregnancy tests: The company I worked for had very cheap EPT tests for sale in their store and I had stockpiled some-such a deal- 25 cents. I had a dream once about being pregnant and woke up to use one of my bargains. Who knows how long past expiration it was dated! So instead of being all pink for positive, it just had a little pink on it, which I argued meant it was positive. The control he provided had no pink on it. (no testicular cancer here-a young man's disease). Still he was unconvinced. We waited until lunch to obtain some expensive, fresh tests and there was a big difference between mine and Steve's (the control). Naomi.

As for her, lot more drama and tears and stuff I can't talk about. Argh!!! is about all I can say.

Just a little queasy today which I will tough out. I still have one dose of Emend left and Zofran as back up. I refuse to take Compazine-nasty stuff. Steve gave me a shot of Neulasta yesterday in my stomach to keep the white blood count good. It went smoother as he missed my blood vessels this time so no bleeding. It is still creepy and nerve-wracking. If he screws up, lots of money wasted. I would have run if it weren't for the snow. A foot is forecasted for tomorrow. Hopefully it will be over by the time Shanna drives here but it sounds like it might be hard for her to avoid. Update, she's leaving a day later.

I did meet one of my neighbors. She locked herself out of the rental house next to us when she went out to shovel the snow. A new experience for her as she is from Houston. I let her use the internet to retrieve phone numbers that she could use to get one of her roommates to rescue her. Otherwise, none of them were coming back for 6 hours. There are 4 of them-which is against code in our neighborhood. But they are quiet and a huge improvement over previous tenants which have included noisy frat boys and the worse, a family that kept vicious American Bulldogs (think large pit bull) that would escape. And she is growing her hair out for Locks for Love to honor a family member who died from cancer so she is special.

The wig still hasn't come. Even something that was shipped out Monday from Seattle has come here. I have a wastebasket a quarter filled from my combings. Spud during his annual sheds does that every day for a month and still has lots of hair on him and he's just a little dog.Today is the day the hair is supposed to fall out. I still have alot left though. I want to have it at least one more day as I have a neighborhood party to go to tomorrow and it would be nice to have hair. Of course that foot of snow will be fun . Last year the same thing happened for Fran's annual tea. We started as a group of neighborhood team baseball moms when the kids were in 4th grade and we would go out after the games for a drink. She would keep the group together with invitations sent like "Moms of 7th grade boys Tea" Now the boys are 26 or 27 and scattered to the winds though Josh is friends with most of them.

Josh came over for lunch-he is on vacation and will leave for Maryland Monday to the the in-laws. Steve went out and got me a tree which my friends will come over tonight to help me decorate. The big snow is to hit here at 1am. It will hit Boston at 11 am-the time Shanna had previously decided to take the big drive. I will be watching the weather channel nervously until all the kids' drives are over.

Wednesday, December 17, 2008

The Smell of cancer

Naomi wearing my temporary wig and her elf costume. You can't see the many bells attached to her causing alot of noise as she moves but if you click on the picture, she can see her blue eyes as she doesn't have those contacts in that I hate so much. It matches my current-what I have left- hair for now. The hunks of hair hanging below it (I didn't have any clips and I don't have long enough hair as Naomi does to tie it in a bun)of mine matched perfectly. I thought Steve took some pictures without the hat but no. It's too shaggy and short but the price was right.
Basketball was a disappointment. She did get to start but quickly ran into foul trouble gaining Coach Steve's ire and bench time. Aside from a few good steals and rebounds, she did nothing special against a weak team who was actually ahead for the first 10 minutes-all the starters were off. The Rats eventually won by quite alot as their bench is quite deep and the other starters got their game back. Not Naomi. But they will be tortured today-the foul shooting was awful and he was especially furious with our star.
I do read my stat counter with interest (yes I am a nerd). Some of hits come from search engine terms that I might have used once. Like Free-troit Bounty Pay (this is to subvert google-I make sure to not use last names so people don't find themselves in the middle of my blog-I guess I should start that with schools too) I had mentionned that Coach Steve is gearing up to beat them-the number one school in most rankings. This is not a rare sentiment. All the schools want to beat them-both the men's and the women's. They recruit from all over, which doesn't quite seem fair. But I do see that the school itself got onto my blog. I also get hits from people who have the same last names as small Italian towns that I visited. It's not clear if people get their names from where they lived or if the towns are named after them. I think the former in Europe (Paulo di Gagliano) and the latter true here. Ann Arbor was named after the co-founder's wife.
Cycle 2, Day 2. I don't feel bad. Not even the splitting headache I had the first cycle. I had a headache yesterday but it was treatable. I would run if it weren't for the snow. While writing this I got a call from Shanna hashing out the schedule. Of the 9 nights she's here I get 4 nights. Of course I want more but she is being pulled in alot of directions. On top of it, it's Josh and Julia's turn to go to Maryland for X-mas so the only day we can get everyone together is this Sunday.
Now for my non-cancer friends, stop reading now. This is embarassing enough. Has anyone's sweat changed because of cancer? Now since I didn't notice this until after the first surgery and they were messing around fetching nodes, but now I am Ms. Stinky despite my constant washing and deordorant applications. I googled this and came up with cancer sniffing dogs. But sadly I don't need their extra senses to pick up on this. Fortunately for whatever reason I have no apocrine glands on my left side, fortunate as my broken arm made it impossible for 4 months to pry my arm away from my body so hygiene was a bit dicey . But I got an extra dose of them on my right and they have mutated into something awlful. I put this in my title so googlers will find it and please, please comment.
Josh just came over so have to go.

Tuesday, December 16, 2008

The Cancer X-mas stocking-Round 2, Day 1

Somehow it doesn't seem right to take an otherwise healthy person and then poison her but there you go. First stop: blood work. Second stop: meeting with Dr. Henry and her nurse Ann. My blood counts seemed as if I hadn't even had chemo. Everything was in normal range, even the liver levels that had been high were now good (no alcohol). Although the white blood cells were in the normal range, they were on the low side. Turns out that Ann lives a block over from me and sees me running all the time and we have friends in common so we spent some time chit-chatting. Third stop: infusion room. Right away I was given a large hand-made stocking chockful of goodies including an etch-a-sketch and a box of crayons. Naomi has since gone through it picking out items that she wants to keep-not the coloring book and the crayons. I did save the Jelly Bellies for myself. Maybe they think I'll be hit hard with chemo-brain. I also got my visit from Mr. and Mrs. Santa Claus. Things went alot quicker as they didn't think I was going to react so they stepped up the infusion rate. While I was getting the Red Devil, I suddenly got this intensely bitter taste in my mouth. Other than that, no problems. The girl in the next bed was in her early 20s(!!!!) with the same regime as I have only she was having her first Taxol today.She said the first round of AC had been the worst but learned tricks to control the nausea-a big believer in SeaBands. Her mom seemed younger than me. What would be worse than having cancer myself is sitting in that chair watching my daughter(s) get treatment. In the infusion waiting room, I saw the young woman from the support group awaiting her first chemo-ALONE. She had said she has lots of family support, which I thought would include them being with her on this very scary day. She was on the phone when I saw her, otherwise I would have gone up to her. I was then called away and she never showed up in the main room but they have lots of private rooms generally reserved for sicker patients. I do hope someone showed up for her. Fourth stop: Lunch. I never had been in the UM cafeteria-lots of choices and fairly good food. Live music too.
Fifth stop: Rhymes with Kaiser people or more correctly Parke-Davis people as most of them didn't fit the "Kaiser" mold. My former boss Mike was in the hallway with several biochemists from P-D. I was surprised to see him as I thought he was in Kansas City. He is but UM is going to trial with his company's new leukemia drug-too bad I don't have that. I said he (his company) needs to start targetting my cancer-now, please, as it is underserved. Even though only 15% breast cancers are TN, that still works out to almost 30,000 ladies. Lots of potential growth factors to go after. He had gone to school with my brother. He is very bright and knowledgeable. I learned alot of medicinal chemistry from him -all neuroscience but now that he seems invested in cancer, put that brain to work to help me and my many cohorts. We wanted to talk more but I was late as it was to Sixth stop: Wig Bank. Still not sure when my real wig is coming in-it was shipped out Friday but my hair is falling out at a faster pace now. Combing my hair is profoundly depressing. I need something close to NOW. On the phone (while getting the red devil-good at multitasking) I told her I had chin length, straight blond hair. Two of the wigs were exact matches for my hair-amazing. I went with the straight shag pixie. I'll post it later today. Steve took a picture of it on Naomi dressed in her X-mas elf outfit she needed to wear today to get free lunch. She had to serve the teachers their annual X-mas lunch. Tonight she gets to start in the home game against Adrian. By all rights, she should always be starting but the academic probation thing meant no starting and last week, no playing. She's in the clear now. The two other posts are much taller but are not as agile as Naomi. There were two other posts: one went down to JV and the other comes in only when it doesn't matter. Naomi should be a forward but that position is no longer available with Coach Steve's new strategy.
Seventh stop: Cancer resource center manned by a very nice lady who goes the extra mile to get you stuff you need. The wig person also gave me some caps to wear around the house and one donated by the Fiber guild, I could wear outside. Got a catalog so I could order more stylish ones. I was going to the American Cancer Society's Looking Good program in which you learn to tie scarves and put on make-up to cover up chemo's ravages, tomorrow at St. Joe's but it was cancelled. I'll go in a few weeks to Chelsea instead. It will be the day before chemo 3 so hopefully I will feel my best.
I had to get up early this morning and was able to talk to Naomi a little to see what is bugging her. Yep that boy. You can tell someone until your blue in the face that nobody is worth it who makes you feel so bad but it falls on deaf ears. She said she is feeling a little bit better about the situation. She called me from the bus to say she forgot to tell me good luck with my chemo.
Yesterday I spent a good part of the day with Shanna's mom-in-law Olga who lives about 5 miles from me. We had a large Syrian lunch with home-made baklava to take home so if anyone wants to visit me, they can have some as an incentive to see me. Olga is a good cook. Olga and I share a grandson-the precious Oliver. The sharing wars start soon as they start the long drive Friday to get here. Later her French neighbor came over. I got to practice my French so that was cool. Olga knows French also from her days in Beirut. Aside from not being able to say 'h's', common among the French and Italian as they have no sounded 'h's-my Quebecoise step-grandmother always called her husband oward, she couldn't say 'r's either like Elmer Fudd . ( think-wascally wabbit) In "Baby Mama" the childbirth educator had the same problem. "So I see you are a caweer giwl" "I'm not gay" 'caWeer giwl, I said" "Really I'm not gay-she's just my surrogate." But she was very sweet. They were talking about ghosts. Both ladies have dead moms that are sending messages. Olga's mom said her mom turned her yellow rose plant into a red rose plant because she prefers red roses. Maybe my dead mom is choosing to communicate through wig names from the Raquel Welch collection. I am to research that to find a more scientific reason. If I don't find out, she'll go to the botanical gardens across the street. But maybe she prefers to think her mom is communicating through messing around her plant's genes. Some of my fancy columbines are reseeding themselves with the plain form of the plant so they are looking less fancy with each season. But this is the plant itself that has changed.

Feeling a little queasy and tired. They dope you up quite a bit. But I won't miss Naomi's game.

Steve will get me a tree soon. Maybe Thursday or even Wednesday some of you can help me decorate? Deb has already offered. I have baklava.

Monday, December 15, 2008

The weight of a breast

In one of my new follower's pathology report following her double mastectomy the weight of each breast was included along with a comment that the woman was very pleasant. Huh? I never met my pathologist so s/he wouldn't be able to assess my pleasantness except by reputation. But I guess the weight is important as there has been a recent study correlating asymmetry in breast size with cancer risk i.e. if one boob is way bigger than the other, for some reason you are at greater risk for cancer. I never noticed any asymmetry in me until it was pointed out the day of my fateful mammogram a few months ago. And the bigger boob wasn't so because it was riddled with tumors, no my 'good' breast was the bigger. Now it is even bigger due to all the slicing and dicing of the bad breast.

But the weight of the breast issue reminded me of this administrative asst. intern we had a few years back. She wore way too much make-up and was extremely busty. For some reason, several of the chemists found this charming and drooled visibly after her. She wrote a note to her friend about the dirty drooling old men chemists and wrote how she was able to weigh her breasts in one of the labs. She then made copies of this note sending it to a communal printer, instead of a local printer which she probably intended where some of my colleagues found it and read me the highlights. How and why she weighed them wasn't mentioned though curious minds wanted to know.

I'm big on estimating. I figure breast tissue is roughly as dense as butter. No air pockets or bone to confuse the issue as the rest of the body has. Imagine a pound of butter and if you could mold a life-sized replica of your breast out of it , you can probably guess it weighs about a pound. But I can just see her flopping those breasts on top of a scale.

My last day before round 2. I was able to run comfortably yesterday. I promise myself that I will stop at the first sign of fatigue. I might not have time today.

My day was made unpleasant by Naomi issues. She had allegedly attended the boys' bball away game the other night. I asked, who won? She said. Ypsi (good guess as they were heavily favored). Now I knew Huron had won with a 3 pt shot in the last second. So I had asked if she was really there and this set her off. Her proof was that Coach Steve sent her a text message saying he saw her there and was disappointed with her. The girls team was there but she didn't sit with them as she was supposed to. She sat with a 'bad crowd' instead in his eyes. As for her not knowing the score, her friend had parked in a tow-away zone and they left right before the game was finished (to beat the traffic) and Ypsi was ahead by 2. But the rest of the day she was weepy and moody refusing to talk.

We had our 'family' dinner at Josh and Julia's. It was nice. They will be gone to Julia's parents for the 4 days around X-mas so alternate plans have to be made.

Today I go over to Olga's, Shanna's mother-in-law. I also have to deal with this absurd bball fundraising thing. If the wind would die down, I'll run.

Sunday, December 14, 2008

The X-mas spirit

Still debating about the tree. Seems so depressing not to have one and Steve really doesn't like to deal with one. My hair is slowly starting to shed and I am feeling weaker. I have a sore on my lip now and my digestive tract is clearly unhealthy. Still not as bad as I thought I would feel. I didn't run yesterday as I thought I was getting the chills and coming down down with something.

I've been keeping busy with visitors. After one left, another came over with blood orange sorbet and the last 5 episodes of Weeds. Josh came over Saturday to take me out to lunch. He had free tickets to the Pistons in the 4 th row the night before that his neighbor, a physician, had gotten from his hospital.He is married toJulia's business partner. He had a good time. It was very nice to be out with Josh. I really hope this auto industry fiasco won't cause him to lose his job.His company seems to have lots of faith in his abilities and gives him a lot of responsibility even though he is the most junior engineer there. Also no 2nd grandchild for me if he has no job.. Later yet another friend came over with raspberries. Her apartment was completely flooded by a broken pipe and has very much complicated her life.

Last night was our mom's group party. Had to drive through freezing rain to get there. Although I am not taking any drugs aside from Prilosec, my liver has probably taken a beating from the chemo so I limited myself to a quarter glass of wine. I had a little trouble getting into the X-mas spirit initially and tried my hardest not to be a downer. The hostess had decorated her house very nicely. Got lots of nice presents: a flock of geese (this actually will be sent to some impoverished villager), a batteryless flashlight that runs for hours on 30 seconds of hand-cranking, alpaca glittens (glove-mitten combo), a wine stopper that looked almost like the Murano glass stoppers I brought back for everyone from Florence, lots of chocolates and wine, and various books. We've been meeting 29 years since our 1979 vintage babies were a few months old. Lots of personal growth since then and hard times and good times.


No not a wig from the Raquel Welch Collection although they do have some good names, one of my favorites is Relentless, but why oh why do I have this?

Sandy came over Friday. She is a 4 year survivor of B cell lymphoma, Stage 4 and went through a chemo regime that makes mine look like a run in the park. At some point in the conversation, she asked why I thought I got this -not why I deserve this. I repeated the whole overexposure to estrogen theory though this might not have any bearing on TNBC which has completely different demographics and probable causalities. She wondered if I hadn't considered my time in the lab-about 35 years worth (I was probably exposed to even more carcinogens as an undergrad as we had no gloves or ventilation). She has fingered benzene as the probable villain for her lymphoma. There are many cancers linked with chemical exposures: brain tumors, leukemias, lung and liver cancers but breast cancer is not generally on that list. And there's the radiation. I took I131 to destroy my thyroid with beta rays 14 years ago. I was told to keep away from people for a few days. When I came back to work, I decided to have the radiation safety people there measure me. I was 30 feet away and around the corner when I started hearing the loud static from the Geiger counter with them giggling, oh she must be coming close. Off the charts once I was in their office. Although beta rays (very deadly) only travel a few mm, the gamma rays were flying all over the place. They wouldn't have to travel far to my breast. At the San Antonio Breast Cancer Symposium concluding this week, it was reported that the link between Prem-Pro and breast cancer is more definitive than ever. So maybe my tumor started off estrogen positive and then mutated into its awful, undifferentiated self. Some tumors do this and it is not good.

Julia told her grandparents about my cancer. Her grandfather (Reverend Lowtalker to those of you who went to Josh and Julia's wedding) is a pastor of some fundamental "Christian" church in a very small western Michigan village. (Ironically, on one of our cross state bike rides when Josh was 11, we spent some time there trying to find a phone and we both thought the place was a desolate hell hole). His message to me was not to have them poison me but to take up juicing. I am surprised he didn't mention prayer. He repeatedly told his daughter (Josh's mom-in-law) that her bad eyes were due to a failure of faith-she just did not pray enough and so was cursed with myopia. This did not make her pray any harder but become very cynical at an early age on what her dad was preaching.

Of course my father too blamed me for my myopia though not because I didn't pray enough. No I read too much. These glasses were really expensive!!! You did this to yourself with all that reading in bad light. Consider this your birthday present!!!

Actually he was probably right though he didn't know for sure as he didn't read so much himself but early short focusing is associated with myopia.

Saturday, December 13, 2008

Happy Anniversary!

Sharing our first drink as a married couple

Steve and me 31 years ago. The colors have faded badly
Thirty one years ago today, Steve and I were married at the Zal Graz Grotto Club, a Shriner's hall by the Rev. Wintermeyer, a minister of the Re-organized Church of the Latter Day Saints. No we are not Mormons, not even 're-organized ones'. For several years, I had run the physical chemistry lab of my beloved professor Dr. Brockway. He had done so much for me. I knew he had been a minister at one time so I had asked him to marry us. His license was lapsed but he said his friend would do it.
So this was not a fancy wedding by any means. I catered it myself with some help from my mom and my step-grandmother Jeannette. Jan did the flowers: I did the decorations. The ceremony started with my grandfather wolf -whistling to get people's attention. No attendants or procession. This was in sharp contrast to that of our childrens' weddings or even my parent's. My dad did get a band and was the photographer. We had around a hundred people there. A few days later, we had a reception in New York for Steve's many relatives that was much fancier. We went camping in the Keys for a honeymoon. We found out that it is impossible to stake a tent on a coral atoll and had to share tent space with huge lumps of coral to hold the tent down through the windstorms we endured there. Later, in Tampa, we had the biggest fight of our marrriage precipitated by Steve smashing my car (it was still driveable) into the rear end of a car that stopped on a dime at a yellow light. Steve, as a New Yorker, reads yellow lights differently. After listening to about 5 minutes of my harping, he pulled into a working class neighborhood and without a word, got out of the car and walked away. I assumed he was just going to cool off for a few minutes and come back but after an hour, that didn't look likely. Steve, bless him, has no sense of direction. Kathy the other day was talking about 'skills' ala Napolean Dynamite. I have map skills. Maps are etched onto my brain. I almost always know what direction I am heading. I can draw you crude maps of almost any city I've spent time in complete with elevation changes if I've been running or biking there. I know this isn't much but it's what I have. Steve can get lost in Ann Arbor so a large, strange city presented him some challenges. I also knew he didn't have much cash on hand. I had all the traveler's checks inconveniently made out to him only. It wasn't long before the local kids wondered why I was parked there and began to pelt the car with oranges. I was hesitant to move just in case he came back but after a while I knew that wasn't going to happen. My marriage was only a week old but already was over. I was having quite the pity party and cried my eyes out. After a few hours, I drove back to where we were staying-about 10 miles away and he was there. With a the few dollars he had, he bought a map and got a cab and told the cabbie to drive him as far as the few bucks left he had would get him which was five miles. He walked the remaining 5 miles.
We worked things out. We've gone through alot: 3 kids, various illnessess and deaths. I've always felt that I've gotten so much more out of this marriage than Steve has. I am not the easiest person to put up with but he has. I love him dearly. Happy Anniversary my love!!!

Friday, December 12, 2008

Don't worry, only the good die young

The above was what a recently diagnosed bc patient was told. She thought herself young and good so she didn't quite what to make of that. This is in my on-going series of silly things people say to cancer patients.

Still trying to figure out from the school what Naomi is truly up to. What a pain. So for one of her art projects, she is to somehow denote 'transparency' in a metaphor for her life. She has little understanding what transparency means beyond see through. She thought of painting an air balloon because you can be above things and go where you want. I said, no, there are no transparent hot air balloons and you can go where you want only if the currents are going that way too. Otherwise you can only decide when you are coming down. I said it would be easier to paint translucent helium party balloons that are released or a fish bowl. The teacher isn't too helpful. I guess I have to remind the teacher what a language processing disorder is.

I still don't feel so bad though occasionally parts of my scalp will burn and the insides of my mouth are rough as if I had scalded them (but I haven't). I have sadly discovered that chemo has killed some personal part of me.

This too shall pass. I want the days to pass quickly as my stay in chemoland seems unbearably long but then I think these might be my only days I have. TNBC is sometimes so aggressive that mets appear even before chemo is finished. Usually not but if they appear, it is within 3 years. Still the odds are in my favor-even the ones the oncologist showed me vs the ones the surgeon showed me. I need to remind myself statistics only work for the aggregate, not the individual.

My friend Sandy is coming over this afternoon. We worked together many years ago. When I first started work, there weren't many woman scientists but Sandy was there 7 years before me.
She is very bright and outspoken: so out-spoken that many people are afraid of her but she has a heart of gold. In 2005, she was diagnosed with late stage lymphoma and was given a poor prognosis. Fortunately, B cell targetted therapy saved her life. I am looking forward to hearing her insights.

Thursday, December 11, 2008

Lighten up

So my blogger pal Renee finds appropriate song titles for her headlines. ( I like "My humps, my humps, my lovely lady bumps, check them out") I am going with wig names from the Raquel Welch collection. Late yesterday I got an e-mail from WigSalon that "Elusive" is no longer available. They suggest "Lighten Up" as a replacement. So much for that issue being settled.

Is this a joke? Elusive remains elusive, you should chill or 'lighten up'? Who is sending me this message?

Lighten up indeed. Yesterday I had the energy to be out and about and even get a run in once the road people came by with one pass with the salt truck giving me a 4 foot path in the middle of the street flanked by glare ice on each side. (This worked out fine until those pesky cars would want that space for themselves-selfish bastards) I found some real fruit gelees from France that are almost as good as the ones Jan bought in Paris. Definitely better than the Italian ones I got this summer. One of our other stops included the bookstore where I read more cancer survival stories. Afterwards Steve and I discussed some of my findings.

I'm not the only one who hates to hear "things will be fine". Lots of other 'survivors' hate it too.

They are saying it to make you feel better (he has said it alot to me too).

I know that but it still pisses me off.

What should they say?

I hope you will be fine.

Well that doesn't sound too positive, it sounds like they think there's a possibility that things won't be fine.

Well that would be the truth. That I am terrified that things might not be fine-a 30 % chance they won't be. That I have a right to feel scared even though someone just told me things will be fine and I can't quite believe them.


Lighten up indeed. Yeah, it is not easy living with a crabby cancer patient-I've got to work on that. But here is when the irony comes in (again). Flash forward to 8 hours later to the breast cancer support group. One of the group is going to start her chemo next Tuesday (when I start round 2) and she is downright terrified, way more than me. Complicating matters is that English is not her first language and she's been trying to read up on things but doesn't really understand some of the wording. The chemobrain study people had been talking to her and she was left with the impression that her mind would be erased clear away by the chemo and she can't have that happen. She is so upset, I just want to somehow comfort her, so what were the first words out of my stupid mouth? You've got it. Things will be fine. I did say that even though I've only had the poisons coursing (or is it cursing) through my veins 8 days, I didn't feel so bad and I was even able to run. That far as chemobrain goes, they took newly diagnosed patients comparing them to those blissful no cancer (that they know of) controls and the newly diagnosed people did much worse in recall and concentration tasks way before they had chemo. They weren't any worse during the chemo. Just the awful discovery of your cancer might be enough to screw things up.

Earlier Brenda stopped by and shared with me how one of her grandchildren apparently is tired of sharing the limelight with her now 2 other sibs and demanded, very loudly, that she get the attention now and carried on and on about it while the other sibs went about their business being their loveable selves. It was also one of the other's birthdays so she wanted presents too. Brenda doesn't give in to that. I said something about it is too bad she can't realize that a better strategy would be to act more loveable instead of screaming on the top of your lungs-"you like her better-like me, like me." A hard thing for a 6 year old to grasp or even a 50ish crabby cancer patient. Of course Brenda loves all her grandchildren even when sometimes it is hard to like their behavior on a given day.

So for the support group-5 patients and 2 social workers. It was interesting. I can't say too much as per support group rules but I did learn a few things. One was that my cancer club membership includes free massages and yoga sessions. If my wig experience (*&!%) doesn't work out, patient services will give me a temporary one. I did share my wig experience-I had read the 'lighten up" e-mail right before coming there. Only one person ever lost her hair and she had a great experience with FC. One member had her small estrogen positive tumor removed 3 years ago followed by radiation. I wanted to say, so you need support because.....but that wouldn't be fair. As said before, I showed up once to a newborn loss and miscarriage support group with my miscarriage while everyone else had a newborn loss and I am sure they were wondering what I was doing there.
So this blogger thing went off-line in the middle of a posting erasing half of what I wrote this morning. Damn.
Naomi had a half-day of school (despite the ice storm) yesterday so she and the b-ball team went to IHOP for most of the afternoon. She does like the team. For away games, Coach Steve wants them to dress up nicely so they'll look good while the younger teams play. Naomi chose to teeter around in Shanna's discarded spiky boots. She was benched due to her grades last week. Presumably she is good to go for next week. They didn't need her winning by 40 points. She didn't get home until 10:30.The Lady Rats will steam roll over the conference teams-it's the out of conference ones that will be challenging. DCC in the number one team in the state and they want to beat them. Salem was number 8.
We will have our mom's group X-mas party. Yay! Got rid of the brown monster today donating it to charity instead of trying to market it on Craig's list. Yay! Filled out even more forms concerning my identity theft. Decided to go for the Lighten Up wig as time is running out. My hair might be gone by this time next week. I do feel less nausea. The inside of my mouth feels like I've burnt it though. I was able to run again though it is still icy. The ice free path is wider now.

Wednesday, December 10, 2008

Picking ones poison

I've tried to balance out my symptoms as much as possible without resorting to drugs. Yesterday the queasiness was getting to me and I finally took a compazine. I know I have some medicinal chemists reading this who know that I spent a good portion of my working life making dopamine antagonists of various sorts. After studying their side-effects, I vowed never to take one. Indeed in the PDR, the list of side effects for compazine are longer than Adriamycin (although it does not cause heart failure). It did seem to get rid of my queasiness but I didn't feel good on it. Although I am still a little queasy today, much less so.

Before I took it, I was able to run 2 miles in the pouring rain. Somehow there was still ice out there but cardiovascular-wise I had no problems. Towards the end of the run, I didn't even feel my nausea.

There is a bball game tonight but Naomi is ineligible to play, which I don't understand the timing as her bad grade episode was last week. She's eligible to play next week though and they will have 2 home games-one on my chemo day. Hopefully I can go then. Tonight is in Tecumseh-a 90 mile round trip with little expressway driving against a team that lost all its starters. Maybe Coach Steve was able to pick which week to serve her sentence as she won't be needed tonight. He wouldn't have won the big game last week without her.

There is a breast cancer support group meeting tonight. Maybe I can go to that.

Every year our mom's group has a X-mas party but it doesn't look like it's going to happen this year which makes me sad. Too many conflicting schedules. I am still debating whether to put up a tree. I still have some energy so I could. It might cheer me up though it might be too attractive for Oliver.

Tuesday, December 9, 2008

The "Elusive" is indeed elusive

This will be me in a week or so in honey ginger aka dirty blonde. I will have the bangs shortened about 3 inches. Old Raquel is holding up pretty well-she has at least 10 years on me. Frankly after staring at her face for more than an hour with her various products on-she doesn't seem to hire any other model-I've had it up to here with her.
I would like to have the FC Salon officially removed from the suggested places for cancer patients. Deb, Jan, and I got there a little early but then had to wait for more than a half hour for my appointment. I was feeling pretty nauseous and the perm solutions were making me sicker. My cutesy wig consultant sported a name not used before 1980 and a 'trendy' haircut with random shanks of hair sticking out 4 inches beyond the main mass. Yeah we were going to relate real well. She hadn't been a consultant for a while so didn't know where anything was or indeed what was available. Alot of the time was spent with her fumbling around for samples. Most of the samples were 'petite' so they didn't quite fit on my probably large head , made larger by my fairly long, thick hair. Even though most of the salon was bright, new, and attractive, the wig area was a darkened room barely lit with a fluorescent bulb. My skin appeared greenish. I never felt more like a cancer patient with these garish, Farrah Faucett styled, bright colored wigs on. It made feel profoundly depressed. For more fun, the room was 90 deg. They carried one line-Raquel Welch's. I would characterize these wigs as 'fun' i.e. to look glamorous once in a while, not for every day use. It pissed me off that they would advertise their services to cancer patients. Eventually we trotted outside with a mirror to get some idea of the true color. Incadescent lighting would be nice. I finally found a style that would be OK with modifications. She agreed to order it in 2 colors that they didn't have and I was to come in later in the week to decide between the 2. Fine. But a few hours later, she called to say that Raquel is no longer making the "Elusive'. I could have the red one (by red, it would make Naomi's hair look drab) for a very good price or I could pick something else cute. Or I could find it on-line, which is what I did. Hopefully that will work out. The whole experience put me in a very bad mood. Jan offered to drive me all over hell to find the right one in the suburbs but I am now getting carsick.
We watched half of the 3rd season of Weeds while eating Thai food. This time, Jan went to fetch it instead of having Steve being the gofer. A welcome change.
Naomi seems to be working with her teachers to get out of the hole she dug. Her math teacher is especially putting in extra time going over stuff with her. Naomi seems to know the math but freezes on tests. Her teacher is realizing that now. But she is letting her retake some of the tests.
I am queasy today. I thought it would go away by now. I still want to eat. I might try to run as it will be above freezing.

Monday, December 8, 2008

Wig out

Today I go for a wig. Naomi is full of suggestions and offered to skip school in order for me to pick out something that makes me look younger than I am. She hates having an older mom.

My queasiness is getting worse. I had thought the worse was the 5th day but no such luck. Still not as bad as when I was pregnant. Presumably those who are prone to morning and/or motion sickness are more prone to chemo queasiness. On the positive side, those who regularly drink alcohol aren't as affected. I am not drinking anymore. As for morning sickness, it lessened with each pregnancy. Very bad with Shanna, much less so with Josh. By the time I was pregnant with the third, hardly any at all but of course I lost that one. None with Naomi but that just made me nervous at the time as morning sickness is associated with a successful pregnancy. As for motion sickness, I've spent a few bad days on cruises when no one else seemed to be bothered so I guess I am sensitive.

I was becoming stir crazy yesterday. We finally took a walk in the cold and wind for an hour. Very pretty. I would have done it by myself but I am feeling dizzy often now and probably shouldn't be by myself. Steve really hates the cold.

Steve's cousin Stu finally got a hold of him to invite him to his daughter's wedding this spring. Steve is extremely bad at keeping in contact with friends or relatives and hasn't talked to Stu for about 8 years despite (or because of ) my nagging. But they managed to patch things up. Steve should have invited him to Shanna's and Josh's weddings though Shanna's would have been difficult being on a Friday and during the school year. Naomi is very excited to go to her Jamaican-Jewish cousin's wedding in NY. She thinks it's really cool to have Jamaican cousins though as I have explained several times, they don't share any Jamaican blood, just Jewish blood so therefore, she isn't Jamaican herself. Suffice it to say, Naomi is totally immersed into African-American culture. I don't believe she has any white friends left.

Josh came over briefly. He had taken 3 year old Sunny the German Shephered to the vet because her joints were swollen. He was afraid she had premature arthritis but the vet didn't think so as she has good range of motion. She does have some sort of inflammation.

The concept of chemo is just so primitive: killing all the fast-growing cells so the bad ones will be killed. We need more targeted therapies!!!

Sunday, December 7, 2008

Time stands still

I am still overwhelmed that my stay in chemoland is so long-112 days and I've been in it only 5 days. I feel vaguely queasy but it doesn't stop me from getting very hungry. I have to be very careful as my exercise options are becoming more limited-lots of snow outside and cold. I would be running if there was a clear path. I would use the exercise bicycle if Steve knew how to fix it.

So I am glad I am not very tired and I really don't feel so bad. Mostly I am just sad. I still occasionally play the 'what did I do to deserve this?' game even though intellectually I know nothing I've done caused this. On one of the blogs I've read (not on my 3 favorites), a woman writes how the week before she was diagnosed she noticed she wasn't charged for a $20 item at Target and didn't do anything to rectify the situation so when she finds she has cancer soon after, she assumes it to be Karma.

I did spend some time talking to Naomi about the situation. She for the most part, just finds the cancer thing annoying and an excuse for me to get out of doing stuff for her that she wants. Not much sympathy here. She did ask if this meant that she was going to get cancer too. I said I didn't think so-my case seems to be a random piece of bad luck. My cancer is completely different than my mom's breast cancer, which was probably fueled by 20 years of HRT but readily treatable. Alot of TNBC is due to BRAC1 genes but I don't fit that profile as I am much older than most BRAC1 and TNBC and have no family history-there are old relatives in every branch of my family. I am selfishly hoping that my older age spares me the very aggressive path TNBC can take in younger women but I still can't find any data to back that up.

She will not be leaving to go off to school when she graduates. When I was her age, I was counting the days that I could leave the house. I asked if this bothered her that she isn't going off to have fun in some school like her peers. She said, are you kidding? You know I wouldn't know what to do with anything. I can't leave.

Definitely have to work on her independence.

Jan came over to watch movies. She is very sensitive to smells. Unfortunately my elderly pug Spud is pretty stinky no matter how much I wash him. He likes company and will waddle over to any new face in the house. She started going on and on how much he smells and starts fanning the air with a newspaper. This usually drives me crazy but I didn't say anything until yesterday. I just barked at her to please stop that as it was getting on my nerves. I then blamed the chemo for my testiness.

We saw "Baby Mama'-mildly amusing and the rest of those silly vampire shows on HBO that Jan likes so much but I find really stupid.

Josh dressed up as Santa Claus for Julia's customers to have a picture of their pet with Santa at the dog store. He will come over here today.

The older kids have been calling me alot which I makes me feel good. Oliver seems to be doing well. They will start the long drive here on the 19th. I have to find a new crib for him soon as I've borrowed the portable one from Shanna's sister-in-law for so long.

Saturday, December 6, 2008

Starting to fade

The chemo is gradually is showing its ugly self. My gums hurt and I am queasy. I still have some energy but the weather is too nasty to go out. Steve did get an indoor bike but it is not set-up correctly because there is no resistance and I wore a hole in my thigh trying to get a work-out yesterday. Hopefully my repair mechanisms haven't been damaged too much yet.

I made an appointment for my wig Monday. I couldn't get an appt for the day Brenda has off though Deb and Jan has offered to go with me.

Deb came over in the afternoon. I love visitors. As time goes on, I probably won't be able to get out as much. Naomi had another game last night against Divine Child, a team that they haven't beaten in the past but came very close. This team had a bunch of quick, little guards that could shoot 3 pointers at will. As Naomi's main job is to guard the key or their biggest, best player, her services weren't that necessary. But their little guards didn't stop Huron much from scoring so the Rats won handily.

Friday, December 5, 2008

Sin tetas, hay no pairiso*

*Without boobs, there is no Paradise.

This was actually a name of a popular Colombian soap opera. A young woman tries to get out of poverty by getting implants. I thought it was a catchy title. Before learning Italian, I did attempt to learn Spanish to help Naomi with her classes and also to get around in Spain since we went to places where there was no English spoken. There is a lot of similarity between the two languages and I had to try to erase all the Spanish from my head to learn Italian-the French I know didn't interfere as much.

Anyway, I still have my boobs, such as they are. Each day, the affected one seems to shrink.

Slowly the chemo seems so be affecting me. I am not doing too badly though. Basically I feel like my head is foggy and I have vague burning or itchy sensations in my throat, mouth lining, and urinary tract.

Brenda came over with soups for lunch. After all this is over, I will owe people so much. It is so good to have company though. Josh came over after work to keep me company too. I will have Julia shave my head in about 2 weeks, which is when the hair will fall out. I don't want to go out in public to have my hair cut off as I am afraid I will make a spectacle. Brenda and Jan have offered to help me pick out a wig next week. I keep putting this off.

The bankcard security division Fed-Exed me numerous forms to fill out that needed to be notarized for my identity theft. I still have to check with the Secretary of State to see if this evil impostor actually got a license with her face on it through them.

The bball team didn't get much of a write-up in the paper. Naomi was so sure that Steve would mention her defense.Salem is ranked 8th in the State and Huron 23rd. I guess that will quickly change as we beat them. She has another game tonight. Hopefully I can go to it.

Thursday, December 4, 2008

Who wants to be me?

Any takers? I didn't think so but apparently somewhere out there, there is someone. Yesterday we got my Sears Credit card bill with a charge for a leaf blower. I don't have a Sears credit card and did not buy any leaf blower on 11-6. Apparently someone equipped with my driver's license and social security number managed to open up a credit card in my name. Of course my driver's license is still in my wallet, I checked. I was on the phone 2 hours between police reports, fraud departments, credit reporting companies trying to assess the damage. My alter-ego did not try to open up anything else or buy anything else. I should check today with the Secretary of State if someone got a license with my name on it and is running up speeding tickets. How did this happen? I am thinking a low-level bank employee. Over the past 2 years, I have had numerous banks copy my license and they have my SS#, even when lots of these accounts were for my mom and my dad's estate so I could sign for them. So either the employee used it herself or sold lists of these. For now, they can't open up anything, nor can I without a phone call to me. Oh they have my correct phone number too but not the password. So my thieving alter-ego, you can have my cancer.
Do I need this? This was after being on the phone with Naomi's counsellor and special ed rep trying to straighten out that mess which is still needs to be fixed but Naomi was allowed to play last night.
And for more fun, the insurance company decided not to cover alot of my unspecified surgical supplies. I did give Steve permission to speak for me to try to straighten that out.

As for my symptoms, I didn't feel too bad yesterday. An achy stomach which has since gotten worse and the headache. The nurse Kenisha called to discuss my symptoms. I said that I am cutting out the steroids as I don't think they are necessary. Dr. Henry didn't like that and I got another call later. I said, I'd take a half dose.
I did find some energy to run and I did OK. It made me feel better. Also running and constipation are not compatible. Sometimes I've taken a break from running like to bike across the state with my kids for a week and I've learned that all exercise is not the same.
Steve managed to give me my dose of Neulasta in my belly. It made us both very nervous. One wrong move and $4000 goes squirting uselessly into the air. I don't have any symptoms from that yet.
So last night was the opening game of the season. Unbeknownst to me, at a team meeting the other day, with Naomi's permission, my situation was explained to the girls which gradually filtered to their parents. So now I have additional people to pray for me and help. S, who teaches full-time, runs a farm, has two high schoolers in high level sports plus does a lot of the bball parent stuff, offered to clean my house. I said maybe her daughter could drop Naomi home from practice as it is on the way.We played Salem-a team that we've had really bad luck with in the past (this school is my son-in-law's high school). But with our three new girls and a real center, we were very optimistic. Naomi did not start as the coach's policy for not keeping up with her schoolwork. Salem has three very good girls. They have a huge bench but only 7 girls maybe were rotated in. Their star center never left the game. Naomi had to guard her-apparently she sweats alot and Naomi was grossed out by that-she said it made her hands slippery from continually contacting her. We had a very rocky start. None of the new girls did squat. Kelcie, our center, couldn't block the Salem centers shots. Then her tooth was knocked out and she had to leave the game. Jasmine, who is huge, 6'1 and 220 lbs, took over the center but was useless against their big. Naomi went in as the post. In the past, Coach Steve knows she isn't a real center as she is only 5'10 and 160 lbs (sounds like a lot but she is pure muscle) and usually has her as a shooting forward but with all their guards, no more forwards with his new plan and I was afraid, no real function for her on the team. But she quickly scored three buckets driving through traffic which included Miss Toothbashing star center putting the River Rats ahead. (yes we are the Rats). She played the rest of the game. She was able to pester their center shutting her down despite the size differential and also allowing Tyler to do her usual magic unimpeded now by the big. So the three seniors did great and we won. Those new juniors will catch on-they have unbelievable potential, they just didn't show it last night. Naomi felt very proud of herself and her coach was thrilled with her performance. I hope I can make some of their games but S will make me a copy of the tapes. Every game is taped and they spend a lot of time analyzing what went wrong or right.

So the chemo is starting to do its poison. My belly hurts. I am not nauseous or fatigued but I don't feel right.


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