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.

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.

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.

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.

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.

Adaptations

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.

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.