Noli me tangere

The cancer card has expired here in Ann Arbor. The situation here just makes me sad but I need to respect the privacy of the principals although again, I am not getting any breaks here. None at all.
I read a lot, especially in the middle of the night to erase negative thoughts. Lots of Anita Shreve novels lately, Life of Pi, The Brief Wondrous Life of Oscar Wao, etc. Last night I was reading parts from one of those Chicken Soup books, you know-the inevitable triumphs from impossible situations. Even realizing how emotionally manipulative these vignettes are, I still was reduced to blubbering but some of that was out of self pity. Poor me, poor me. Nobody likes me. Everybody hates me. think I'm gonna eat some worms.

During the day, I am on the computer. One of my favorite blogs is Cancer Bitch (http://cancerbitch.blogspot.com/) who refers to herself in the 3rd person. She is a year out of treatment and is doing fine but rode that cancer roller coaster with style and sarcasm. Perhaps I should start referring to myself in the 3rd person as redundantly, Cancer Crab.

The Asiatic and tiger lilies have a distinct order of blooming: first the pinks, then the deep reds, then the oranges and finally the yellows. I'm right in the middle of reds, the oranges are just starting to open. The white and pink star gazer lilies I had have perished in my incompetent hands. Some of the calla lilies I got for my birthday are in bloom.

 My day lilies are about to bloom also.

I ran 106 miles during the month of June. This works out to be about 3 lbs of fat. I think of pounds of butter stacked up-same density. It was cool this morning facilitating my long run. I turned in the opposite direction of talkative lady. I saw one car the whole time I was out there. An added bonus, too cool for bugs. I am covered with bites. Either there are more bugs this year or I heal more slowly from their attacks. They seem to find my cancer blood tasty. In the past, mosquitoes would rarely land on me.

Today I go to orientation for parents at Naomi's community college. She herself is on some wild goose chase with that boyfriend.

Tougher than cancer

What is harder to deal with than cancer sometimes is dealing with a rage filled teenager who completely lacks common sense. Sometimes I just don't know how to handle her. She spent the day at the beach. She has fair skin but she thinks it is very important to have a tan and will fry herself despite lots of warnings.


I am very tired. Usually I recover quickly from my runs but I didn't yesterday. I tried to go for a walk with a friend in the heat yesterday but after a mile and after being attacked by numerous deerflies, I asked if we just not do this that day. Today I took a nap in the middle of the day though I was able to run this morning. I am looking forward to cooler temps next week.

I did go out to lunch today with my son Josh who is 27. I hadn't been alone with him to talk in a while so that was nice. If only Naomi could be as easy to deal with as him.

My raspberries are ripening in the hot sun. I went to look at the berry plants that have invaded my hosta section and was surprised to find out that they are not raspberries at all but wild blackberries (fruit looks completely different though the leaves are similar) Not sure how they all got there all at once. Birds must be a vector somehow.

I haven't seen my little hummer in a week and unless microbunny turned into macrobunny, he's gone. Even the chimney swifts are gone

Never too late

I was out early on my 10K run this morning on Warren Road, a scenic beauty road that is tree lined and runs by several farms. I rarely see a car on it much less people but today I found a woman walking her dog (Sweetie-a shih-tese, Maltese-shih tzu). She wanted to talk but said if I didn't want to interrupt my run, she'd understand. Oh great, more criticism but no, she wondered if I knew what had happened to 'walking lady', so named as she spends the entire day walking while smoking. She is dark brown from the constant sun with long blonde hair and if she weighs 70 lbs, I'd be surprised. I said I had seen here about a week ago but she must have cut down her walking considerably as I rarely see her. Anyway Sweetie's owner told me about all the marathons she's run and she didn't start running until her 70s. How old are you now? Well how old do I look? Well I would have said 70 but you made it sound like you were 70 many years ago. I'm 85.

Although it still is toasty here, the low humidity made my run tolerable.

Much to Naomi's chagrin, Dontae changed his mind about wanting to come here. She just left him at his mom's apartment, too mad to say anything to him.

My little pretties

More beautiful cards compliments of Lesa, a breast cancer survivor from Plymouth, MA (LittleLifePreservers)who is on a one woman mission to brighten the lives of women in treatment with her artistic, homemade cards. So much appreciated by yours truly!

Some zinnias and cosmos after the 2 inch rain

My hen and chick turning into a rooster in my rock garden

Poppies (California self sowing type)-I have bad luck with traditional poppies but these grow all by themselves

Lots of rain at the end of the day and the humidity dropped with it-finally. I went out after the storms to survey the damage-lots of water logged plants. My poor little blue bells was covered with slugs. After killing those disgusting creatures, I put the pot in a slug-free zone. Hard to save the begonias in the ground from their nasty, slimy appetites.

Too tired to run today though I did go to the gym to lift weights and do the elipitical trainer. As the fat (ever so slowly) dissolves, I can see more and more of my latent muscles. Still would like to see more hair but six weeks ago, it was only a mm or so and I had no eyebrows or eyelashes. Now I have a full set of eyelashes and very furry brows. Have to figure out how to tame them other than plucking out the outliers. My 'haircut" looks like that of a typical 5th grade boy circa 1964. It has been almost a year since my last real haircut-right before I went to Italy.

Naomi has been running around like a maniac trying to clean up portions of the house Dontae might visit. Ha! He allegedly is a neat-nik and she is NOT. He is coming over tonight. I am surprised she hasn't gotten around to lecturing me on what I can and can not say. I am just so embarassing.

Running advice

I am not a graceful person. I can't even run right. The kids all have requested at various times in the past that I don't run anywhere near their school (which was 2 miles down from where I worked)where I could be seen as I swing my arms in a ridiculous manner. The only time I didn't run this way is while I was recovering from the broken arm. To beat the heat this morning, I got up at 6 and soon was slowly chugging up the hill on the bike path when a walker stopped me. Excuse me, can I speak to you for a moment? Sure. Who told you to swing your arms that way? Sorry that's just the way I run. I ran off pissed that I didn't come up with something better than that.

She had a very annoyed look on her face. She was fat and around 40. It is doubtful that she's run a day in her life. I don't know why this bothered me. Maybe if I stuck around, she could tell me my hair style was unflattering too. You know, if you can't say anything nice, don't say it at all.

I had stopped because I assumed she wanted directions. People get confused between dhu Varen and Warren which are just a mile apart and the signs are often missing. Or they are trying to get on the Freeway, which they can see but no they will just have to turn around and get on 2 miles away. Sorry, I didn't plan the roads here.

I've often gotten running advice though people have always been nice about it. My favorite was at the end of a triathlon (running is the last event) and a man said that he knows that he really shouldn't tell me how to run as I had been ahead of him and I must have been a hell of a swimmer (no-I'm a crappy swimmer but a fairly good bike rider)but I could be much more efficient if only....yeah, yeah, yeah.

Despite how early it was, the heat was even more oppressive than the other days and I struggled to finish. A big storm system just went through that hopefully will cool everything down.

After the run, on to the dentist to get my crown placed. The assistant said there was a 95% chance I didn't need anesthesia. Well guess what, I am that 5% person. She put in banana flavored numbing oil to prepare for the Novocaine leaving a banana taste in my mouth for the next few hours. Hate bananas.

The Y approved my reduced fee scholarship so I can continue my workouts for the next 6 months. Yippy!

Did an IKEA run with my friend Martha this afternoon. She had never been.

Sauna

The heat index was forecasted to rise to 107 today so as soon as I rolled out of bed, I tried to get a run in. I went just in the neighborhood as it is fairly shady minus all the trees we lost to ash borer disease. But the disadvantage of running before you wash your face and put on make-up is that for sure you'll run into people you know that want to talk. So I ran into 2 separate people who wanted to know how I was doing but I guess they assumed I must be doing fine as I was running. When Cancerfest first started, someone came up to me and said that they thought they heard I had cancer but since they saw me running, they must have heard wrong. I actually felt better running today vs yesterday but maybe because the sun wasn't on me the whole time. Not much relief in sight here with the heat.

Steve went to transfer Naomi's records from the pediatrician to the 'big girl' doctor but was stumped when they needed her signature as she is 'an adult'. Have they met Naomi? But Naomi certainly was out of place among the crying babies and toddlers asking about birth control to a person who believes in arranged marriages.

The repair bill to fix our dehumidifer equals the cost of a new one. Our air conditioner works only if you hit it the right way. Ugh.

Our LiveStrong class now is sending e-mails to each other every day. I guess we all need support. Off to Happy Hour with Brenda>

watching my flowers grow

My first tiger lily

I am not sure what these are called-Hot cat? Catsia? This is the first year I grew them

The first of the 3 callas to bloom. In a few days, all three plants should be covered with blooms

I shared an office with a man many years ago who every morning would greet me I can't wait for tomorrow. I usually would ignore this (along with requests to pull his finger) until I couldn't stand the badgering and then I would finally ask, Why's that? Because everyday I just keep getting better looking.
If only...

So each day I should be getting more hair and getting smaller. Progress remains at a glacial pace.

What does progress are my flowers with new blooms appearing every day. This week is very hot and humid, which is not good for my running. I did do around 5 miles this morning but the last half was painful. No cooler temps in the near future either.

Pseudoscience

There is just so much junk out there. Somewhere today I read that hypothyroidism leads to breast cancer. The theory goes that hypothyroidism results in lower core body temp (true) and that cancer cells thrive in this colder environment (no proof). When I first read this, I thought I found the smoking gun: Running caused my BC. Here is the train of thought. Running caused me to trip on a root which led to a broken arm which led to intense pain over the next several months which led to me popping ibuprofen (after being cut off from Vicodin)which led to my stomach lining being shredded which led me to pop Rolaids containing calcium carbonate every few minutes which tied up my Synthroid which led to me being hypothyroid which led to me getting cancer. Oh and the tip given to prevent hypothyroidism is to eat kelp, which is high in iodine. Michigan at one point was goiter central as there is little iodine in the soil and seafood rarely was sent here. But iodizing salt cured that. It is now impossible to escape iodine, which MAY account for the high prevalence of Hashimoto thyroiditis, a very common autoimmune disease that produce antibodies that destroys the thyroid. It is allegedly present in 20% in women over 40 (about 80% among my friends). I didn't have that. I had a similar disease that caused antibodies to stimulate the thyroid (Graves') and to control it, my thyroid was destroyed by radioactive iodine. Now that could be a smoking gun as more BC is observed among people so treated. I did a search today and actually BC rates were lower among those with hypothyroidism. It seems that the tumors need the thyroxine to thrive.

I decided that today would be a gym day vs a running day so I wouldn't be running 4 days in a row. But later I see that today is the 'cool' day at only 81 deg (with matching humidity)-much worse for the next 4 days. I did see my buddy Ann who is in the LiveStrong program that meets Mondays and started after my session did.

Naomi went to registration and had to take tests to determine what levels she's at. She did acceptably at math and writing but her reading is deficient. No surprise there. It means she has to take extra classes.

We had a nice Father's Day dinner at our son and wife's house. It was fun to see them.

No sign of the bunnies. Maybe the cat ate them all. I see my little hummingbird only every other day or so. I will post pictures of my callas tomorrow.

Solstice

I love it when the days get longer and longer but now it will be the reverse. I do not want to sink into winter again. The heat is speeding up the blooming of my flowers and I will have ripe raspberries at the end of the day. Friday, I had only 3 callas ready to bloom and now I have 10. None have actually opened up yet but probably will by the end of the day.

In the book, Why I Wore Lipstick to my Mastectomy, patients chose alternative names as of a way of asserting some means of control when some aspect of their lives was way out of control (cancer). It was suggested that they use the name of their first pet and the street that they first lived on. I would be Mimi Cayuta. I have also heard this same nomenclature method used to devise 'noms de guerre' for being a street walker. Oh well. In Italy, we were to select "Italian" names. I felt that I had been cheated in my junior high French class because everyone got to select a new name except me because I already had a "French" name. I went with Valeria last year. In Sevilla, the innkeeper called me, Soothana.

So it's Father's Day. We will go to a barbecue at our son, Josh's house. I haven't seen him in more than 2 weeks.

Life outside Cancerworld

So life goes on and I should give some thought to how I will be spending my life if I survive and I most likely will. While under treatment, I couldn't see beyond finishing treatment. My company shut down almost 2 years ago and I most likely won't resume being a scientist unless I do it on a short term assignment. The few options here are closing down. Before cancer, I thought of training to be a doula and helping those who needed it. One of the volleyball moms I've met does her 'doula-ing' in Honduras and I thought that might be a possibility.

In the near term, I will go to Boston when Shanna has her 2nd baby and help with Oliver in the beginning of September. Then in October, go to Italy again with my friend. In the meantime, I can brush up on my language.

It is very hot and humid here now making running not so much fun. After I stopped running, sweat continued to pour from me for another half hour. Today I only did a short run. Our dehumidifier died when we needed it most and it's in the shop. The air conditioner is threatening to die though it is working at the moment. Lots of storms came through last night. A friend and I watched all the lightning out on my patio last night. The calla lilies she gave me are finally showing some signs of blooming. Have to get some 'night scented stock' as my friend Sara in Wales suggested. It is supposed to release a very nice fragrance only at night. I will check with a nursery tomorrow for it.

Balancing act

At our last day at LiveStrong, they tested us to see how far we came. A 'healthy' person should be able to stand on one foot for more than a minute. Back in March, my best time was 3 seconds. Now it is 20 seconds. I still haven't recovered from what ever chemo does to the middle ear. One of the women in the class said that Cytoxan destroyed her hearing. On the tests of strength and agility, I only did slightly better but I allegedly blew my classmates out of the water as I am so 'strong'.

One of my classmates starts chemo again soon by her request. She wants to do everything possible to ensure her ovarian cancer not coming back. Her hair is about an inch longer than mine and the Taxol probably will make her lose it again. I don't think I could go through that again. It is still a toss up to me which was worse, Adriamycin vs Taxol. Constant queasiness, gastric system sores vs muscle pain. The constant nose bleeds (not sure which drug caused that) and my energy being sapped (both drugs).

They will let me know in the mail soon about my scholarship request to continue my workouts. I will run regardless but the strength training would be nice.

I waited for the storm to past before running in the humidity. No more nice cool days for me. I went out to lunch with an ex-colleague whose wife is a BC survivor. I had a nice time. I feel that I am becoming more and more isolated as people become busier with their lives.

Microbunny

We've been seeing the microbunny for the past 4 days. Despite its very small size compared to its probable siblings, it seems to be weaned and on its own. Yesterday it was nibbling on the neighbor's lilac leaves. In the evening, it hunkered down in the vegetation next to our patio even though it must be able to see us right there. Sometimes it hops through just inches away from us. Danger lurks for microbunny however as also hiding in our bushes is a stray cat-Ratty cat-so named for its mangy fur. There is also someones pet cat that visits our property too.

I went to the Farmer's market yesterday to pick up a few more additions to my patio gardens. Yeah, just what I need. But I love being surrounded by flowers and at night, my color changing solar lights. I love checking out my little gardens daily to see what has grown and what now is in bloom. Somewhere I read that true gardeners don't do annuals. My rock garden is mainly perennials with some self-sowing annuals (alyssum, California poppies, forget-me-nots)but excepting the day lilies, clematis, and various types of tiger lilies, I am very dependent on annuals for color. I tried to economize by growing some by seeds but that was a bust as they didn't get watered enough while I was gone and I left them out in a hail storm. I did replant some cosmos seeds to add to the few mature plants I purchased. I also saved the rhizomes over the winter for the tuberous begonias but then I had a brain fart and planted them in full sun. Half of them burned to death before I realized my mistake.

Our last LiveStrong class is today and they will test us to see how we've improved. One is supposed to be able to balance on one foot for more than a minute. I was able to do it for maybe 3 seconds. Chemo destroys balance for many people messing somehow with the inner ear. I am not sure if my balance has returned. My hair is a little longer (very little) this week. It doesn't lie flat and seems to be growing upward. If I wet it down, I have a little fringe of bangs.

And miles to go before I sleep...

Naomi in her typical defiant pose

So Wednesday is the day that I have decided that I should do a long run as I should be fresh from no running the day before. I awoke to pouring rain. I waited a few hours from the rain to diminish to a drizzle and off I went. Very humid and I had nothing absorbant to wipe my foggy glasses on. If I run long enough, I can run on Warren Road, a designated "Scenic Beauty Road" meaning they don't trim the trees overhanging the road. It is good for my legs as it is a clay road, spongy when wet. Lots of goldfinches flitting around. Unfortunately, a lot of the land are wetlands meaning biting flies in certain seasons. If I stop to rest, they land on me and bite but leave me alone if I keep moving. Must... keep..running. 6.6 miles.

While I was waiting, I wrote a letter to the Aetna appeals committee protesting the denial of claims. It better work.

Steve and I took a walk last night visiting with a former co-worker. The one place in Ann Arbor that hired some of the laid-off former co-workers of mine is now laying them off. Hard times for us chemists.

Bunnies

Lots of bunnies this year. So far they've only nibbled on some of my petunias. There is mama bunny and 3 or 4 adolescent bunnies about half her size. But there is an additional baby bunny no bigger than a hamster. I don't know if it's just a runt or there are 2 families and this little bunny hangs out with the big bunnies. I found it lying absolutely still the other day in the grass. Not a safe place for it as this cat makes regular trips through our yard. Naomi started to pick it up and it leapt out of her hands. I saw it last night cavorting with the teenage bunnies.

There is so much yard work to be done. I pulled weeds for an hour from my raspberry patch giving me a nasty rash. My raspberries themselves are turning into weeds. They migrated 20 feet to my hosta bed. I will kill them once I pick the berries from them in a month. So mean.

We had our last workout day at the LiveStrong program today. On Thursday, they will test us and we'll have a party. Still haven't heard if they will give me a scholarship. I am able to lift so much more weight now and do more on the elipitical trainer.

We have only one man in the class. He was telling us how hard it was to lose his hair as it was his crowning glory. Still a bald man just doesn't draw as many stares as a bald woman so I do have a hard time feeling sorry for him especially now that it's back. He has way more hair than any 50 or 60 year old man I know and certainly more than anyone else in the class. He refuses to cut it until he is 2 years ot of treatment.

It's Naomi's boyfriend's birthday today so she is spending the whole day celebrating it with him. Yes this makes me uneasy.

Mean looking Naomi balancing on one foot

Photo: IMG 44383 JV-Howell album Max Miller Fotki.com

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Another lost to TNBC

One of the Tigers' new pitchers (Eddie Bonine) lost his mom (Danielle Eckman) to TNBC last week. She was only 51. There was an article in the local paper on how she was able to fly out in the beginning of the season to see her son pitch in his first MLB game. She had been a college soft ball pitcher herself. A very scary disease.

Stage 4 BC is not the same as Stage 4 in other cancers. I had a good friend with Stage 4 lymphoma. It had spread quickly to other organs. She went through a year of hell but in the end, she was cured, no thanks to Rituxan, which targets B cells specifically. The same with 'As the Tumor Turns" blogger. No Rituxan for BC patients yet. Maybe these PARP inhibitors will work out; it did for at least one Stage 4 patient. But for now, Stage 4 BC is a slow (in some cases fast if it gets into the brain)downward spiral. This is my biggest fear.

The other woman in my support group, a year out of treatment, recently had a strange swelling in her upper arm. She panicked thinking mets. They were still investigating its cause but suspect it to be a form of lymphedema. They told her "Don't worry: if you have mets, you will know. Patients always know." This did not make her feel better as she didn't know she had cancer in the first place.

Running 4 days in a row is hard. When the LiveStrong class is over (Tuesdays and Thursdays), I will run only 3 days in a row. It is finally getting warmer meaning I have to get out earlier sharing the road with rush hour traffic and more humidity. I ran without my hat today. The kids are out of school so I won't run into any of them on their way to school scaring them to death with my semibald head. My legs are now quite sore but I get a day of relative rest tomorrow.
I didn't see any deer today. On my patio, I hear the two competing male cardinals, each with a distinct song and the constant twittering of my flock of swifts, who don't seem this year to be in my chimney.

So I have several runners with cancer on my blog, Sara, Sarah, and Beth. Hi to you all!

Sue in Italia redux

Today Steve and I went to a fundraiser for the Abruzzo earthquake victims that my roommate Nancy helped organize. The Abruzziese were so kind to us last summer setting up special dinners for us that to not help them a little would not be right. Lots of good food and homemade dolci. It was nice talking with Jeanette and Robert again (Ciao-Jeanette is one of my readers). We also sat with an interesting couple-the man from Torino and the woman from Madagascar.
It is getting toasty again and running is becoming more difficult. I am afraid that I am coming down with a cold as I am so tired.
Josh is in Chicago. Many of his high school friends moved there and he goes there every opportunity he can. Only a few friends left in Michigan. Setting limits for Naomi is much more difficult with her being able to drive. She insists that now she is an adult and therefore doesn't need to check in every minute with me.
I am slowly exiting cancerland. If one doesn't look too carefully, I appear the picture of health with my tan and muscle tone. The hair is so very slowly growing in. It is now fairly thick-can't see any scalp-but still not yet an inch. Maybe in a month I can lose the wig. My sweat glands haven't returned but they can stay away.

The Obligate Runner

Many years ago I had this boss (actually a 'skip' supervisor, the boss I had at the time was also a runner and also occasionally reads this blog)who was distressed that I would go for a run at lunch. You'll be too tired to work in the afternoon. I pointed out that I was only running a small fraction of what I was capable of ( I was running marathons at that time) and it energized me. I soon found an article from the New England Journal of Medicine on my desk about 'obligate runners' linking this compulsion to some variation of anorexa nervosa with a note on it "thinking of you' with his initials. Thanks.

I broke all sorts of running records (for the past two years at least) this week. Most miles in a week (27.4) Most minutes without a break (45)Longest run (6.3). I am happy that it has become easier. The cool weather has helped as I don't do well in the heat. Too little surface area with respect to my volume to dissipate heat i.e. I'm fat, though I didn't do much better when I was thin in the heat. Recurrence rates are doubled for obese TNBC women vs non-obese. I am not sure what their definition of obese is but I don't want to take chances. Recurrence is the BC person's biggest fear. My biggest fear and I didn't even know how to spell it. In this blog, I must have spelled it ten different ways. Why it isn't called 're-occurence'?

The insurance issue has become more complicated. More bills and more denials. I am now up to $1500 in non-reimbursable charges. And those Aetna people answering the phones are idiots.One told Steve that the denial was due to me getting more than 4 treatments a week and that my radiologist would have to justify this. UM quickly sent me a letter supporting the treatment 'standard of care' etc. But now that I have the itemized bill, it is clear that all the denials relate to the numerous x-rays they kept taking to ensure I was being blasted in the right place. Apparently there is a limit to how many x-rays are acceptable. Who knew? I certainly didn't want these x-rays and was puzzled why they kept taking them. So first I will have to go to UM to make sure they didn't keep double charge me (very possible-the same code was repeated several times)and if they didn't, have them write a new letter justifying why they felt it was necessary to repeatedly x-ray me. I am really pissed that I have to deal with this. Average cost per day for radiation: a cool thou. I should at least get credit for sparing them the cost of the usual regimen: 30 treatments vs 16.

I did go to the Wellness Community yesterday for their support group. I debated whether I am still considered a patient as my last treatment was in April but the other woman who was there has been out of treatment more than a year. She still has plenty of issues though. I liked her and we had a lot in common. Once a month, they have a lunch for all in the 'cancer community'. There were a few other survivors of various cancers there.

All this rain has made my garden lush. I've had a few visits from my friendly hummingbird. He ignores my feeder and goes for my impatiens, which don't look like they have any nectar.

Last night I went to the 'moms' group, the post-partum support group for moms of almost 30 year old babies. Our hostess made a fire in her firepit and it was nice outside.We ate barbecued salmon kebabs. Very tasty.

I need to deal with Naomi much more. Lots of issues coming up.

Diet

I decided to weigh myself only once a week so I wouldn't go crazy. Although I've lost 10 lbs and am much firmer since I finished treatment, I still have a long ways to go. I didn't lose any weight this week which should be no surprise given graduation parties and dinner, which included a weekend of mindless noshing but I was still disappointed. Aside from the pain of looking at the mirror, there is a big difference in recurrence rates for TNBC for the obese vs the non-obese, which doesn't make sense to me. Fat produces estrogen so I could understand how excess fat cells could fuel estrogen dependent cancer cells. The insulin theory makes more sense-the obese in general have diets that cause insulin spikes-insulin is allegedly a tumor promoter. Exercise cuts down on insulin levels-I have to think that I exercise way more than the average fat person. At any rate, I am attempting to eat foods with lower glycemic indices.

I am up to 6.3 miles so more of my route is out in the country and I can go hatless. I see more and more deer than I used to. The Y ladies think my body has changed alot and can see the muscles under my fat veneer. I am to apply today for a scholarship to continue there as the LiveStrong program ends next week. I am to include our 2008 tax return, which makes us look quite wealthy but it is a result of Steve's big severance check, which was a one time thing.

I searched the phrase "Aetna Sucks" in Blogsearch to see if my entry shows up. Indeed it does but here's a shocker, it has appeared in numerous others' blogs including an entire blog totally devoted to the subject. Lots of sleaziness on Aetna's part going on. Note to Aetna: If you really want to save money, instead of chiselling cancer patients, perhaps you could consider instead reducing your CEO's package of TWENTY-FOUR MILLION DOLLARS. I have never understood the economics of executive compensation and bonuses. Is this guy (Ron Williams) worth that much? Why do companies pay bonuses to people whose reign has contributed to their companies' downfall? I have to think that this system of paying executives excessive amounts of money to screw up the company put the country in this crappy situation in the first place. These packages seem to be approved by Board members who sit on each other's boards ensuring for themselves fat paychecks.

As for the phrase 'Aetna sucks 'or the usual 'Cancer sucks', I remember reading in another BC patient's blog how much she hates that phrase. First she objected to its grammar, using a transitive verb as an intransitive verb (Sucks what?). She then pointed out that the phrase reminded her of something an inarticulate, crabby teenager would say. Finally she said it made the person sound like a bitter, unhappy person and she wasn't that person. I guess my chemo addled brain couldn't come up with anything more creative than 'Aetna sucks' to describe the incredibly frustrating experience of them arbitarily deciding that I had too much radiation. One of my fellow frustrated people had them deny all claims as her provider was not 'in-plan' despite the provider's name being on their website as an approved provider. When she sent physical evidence that the name was indeed on their website, she was told-Oh that's not up to date. You should have called-the provider did not renew her contract with us. A year later, the website still was not up-dated.

In the Wall Street Journal yesterday, they wrote about a study concluding that the uncertainity of knowing whether you had a potentially fatal condition was more upsetting than knowing you had a potentially fatal condition, which describes the hell we all felt when we were told that our lesion 'may be cancer' but it was going to take a while to find out. I ran into a wife of a former colleage at the Wellness Center yesterday for the nutrition class that Marilyn and I attended. She chose to be treated for her ovarian cancer very far away as the 2 centers here were going to make her wait more than a month to deal with her steadily growing tumor. They had told her the wait wouldn't make any difference. Well no difference to them, but I was going crazy with worry!!! I hadn't seen this woman in 12 years but I had by some miracle remembered her unusual name. (generally I am very bad at names-in one ear:out the other)

The class was about cooking with soy, a contraversial subject for most with breast cancer as soy behaves as a weak estrogen. Shouldn't be a problem for us with TNBC. The class showed how to make several tasty dishes. How to get protein without the baggage that animal protein carries.

Marilyn shared with me some irises which I planted last night. It is past iris season here so I will have to wait a year to see the results. In a few weeks, my little garden will be abloom with more cosmos and all my lilies.

Aetna sucks!!!

One of the fun aspects of Cancerfest is dealing with insurance companies. I've had 3 different policies during the past 9 months and most of the problems arose from the wrong policy being charged despite our numerous phone calls. We've straightened almost everything out. Since I've been out of treatment for 6 weeks now, I thought no more problems. But Aetna has decided that I had 'excessive' radiation treatments and has denied payment for 4 treatments at $250/pop. They claim that I was only allowed 4 treatments/week and that was the standard of care. I have never heard of anyone getting only 4 treatments a week. I have heard of getting up to 35 treatments whereas I had only 16. If I send a letter from my radiologist saying that was the 'standard of care' for my particular cancer, all will be forgiven ...maybe. The staff at UM was incredulous at my request. For the record, my doctor was on Aetna's approved list.

Aetna told me that I should have checked in advance how many treatments a week I was allowed. Of course, they never sent me a handbook. I then would have to make the decision whether to risk my life with this especially aggressive cancer and save money or pay for the 'excessive' treatments. Silly me, I just trusted their 'approved' doctor. At any rate, only for 2 weeks did I have 5 treatments as I started the regime in the middle of the week so at worst, I should only have 2 excess treatments.

AETNA IS EVIL-Hope the search engines pick that up!!!!!

Others' blogs

I do spend a lot of my time reading how others have dealt with this disease. There are a few that I keep going back to-we try to encourage each other. Recently a young woman from Kansas with TNBC decided to quit chemo as it was beating up her body so badly. Her immune system was so damaged by the chemo that she had to be hospitalized several times to deal with horrific infections.
One of the best written is from a woman who had non-Hodgkin's lymphoma (seems to be in remission now-a cure) who refers to herself as "lymphopo' living in the House O'Horrible Tumors being treated at Our Lady of the Damned. Her blog is entitled ' As the Tumor Turns.' '(http://spinningtumor.blogspot.com/2007_01_01_archive.html)

A typical entry:
More than any other word on earth, the word I hate the most right now is "trouper." I despise the very concept, the mere idea that it's a even good thing to be. I loathe the pressure it puts on us to be so goddamn "brave," to be cheerful and upbeat and have a "positive attitude;" and, above all, to "fight."I'm not a trouper. I'm not brave, I'm not upbeat, I'm not a fighter. I spend an average of 2.75 hours every day crying. I cry so hard it sounds like I'm strangling, or drowning. I went to talk to a therapist, and she says I'm suffering from adjustment disorder and bereavement. Bereavement for my own lost self, the loss of the delicious life that I had worked so hard to create: the freedom, the independence, the strength, the vitality, the lust, the competence, the companionship, the dignity. All gone now . I hate what I've become. I hate what my life has turned into.And the only choices I seem to have are: suck it up and be a "trouper"; or bury my face in my pillow and sob.I say fuck the whole trouper business. Let them put this on my gravestone: "Her attitude stunk like day-old fecal matter, and we were afraid she would never ever ever EVER shut up with all that damn crying and whining. Praise Eternity!"

Sentiments felt by so many of us. Many blogs are filled with biblical passages. I tend to skip those as I can't come to grips with praying to stop the cancer. Did they not pray enough before they found out they had cancer? The scariest blogs are from those whose cancer has come back. How these people deal with such a scary situation is fascinating. Once BC has spread beyond the breast, it is generally thought that there is no stopping it-just maybe slowing it down. Maybe this next generation of tumor agents will actually stop it in its tracks so there is hope. I do spend a lot of my time reading in the case this happens to me (and sadly, it's not a remote possiblity) so I will have a plan of attack.

On another note, a funny term my son-in-law used to describe some of the drivers in Boston: Massholes. A masshole is one who makes left turns right in front of you when you have the right of way and sees your blinker as a signal to speed up so you can't change lanes. Of course these people are every where but seem to be concentrated in Boston.

Hair and teeth

I finally have enough hair not to worry about sun-burning my previously bald scalp while running. The ski hat can get toasty. However I don't have enough hair to comfortably go out in public. It looks like the haircuts favored in the early 60s for little boys. It feels nice and fuzzy-I must pat it several times an hour. My scalp no longer is so sensitive. Initially I couldn't stand under the shower as the pressure and heat were too much for it. Also I no longer sleep with a cap on as my fuzz keeps me warm. My wig is looking pretty ratty plus it messes with my glasses so I can't see as well. Maybe in a month I can retire it.

I've lost 3 toenails in the past couple of weeks-some of it due to running but mainly due to Taxol. Never lost a nail running before. My Mees' lines ( I had 4 sets) have finally grown out. If I'd cut my nails short, they would be gone.

I spent 2 not so fun hours at the dentist this morning. My molar split in 2 while I was doing chemo-mainly just a large filling fell out. Most of my molars are comprised of mainly fillings and each of them should be crowned. We'll see which lasts longer-the fillings or me.With my then sensitive gums, nausea, and low white blood counts, I figured that going to the dentist was out of the question. Just lately it began to hurt. Between the increased costs for insurance (5 fold!)co-pays, deductables and 2 crowns, our medical expenses are now a significant part of our income.

Weird cancer factoids: Somehow people with Down Syndrome rarely get cancer. They have extra copies of a gene that helps keep tumors from feeding themselves, Harvard researchers recently found.

A drug used sometimes in metastatic breast cancer, Xeloda, can erase fingerprints. In some parts of Asia, ones fingerprints are used to confirm identity but a cancer patient treated recently with Xeloda lost theirs completely and was detained by airport security.

About 180,000 women each year get breast cancer in the US. About 50,000 (2/7) will die. About 27,000 people will be diagnosed with triple negative breast cancer In contrast, there are only 1200 cases of primary brain lymphoma per year. This is what my brother-in-law had and has been symptom free now for 3 years against impossible odds.

Grad party pix

On our patio. My son Josh near the orange bowl. Absurdly obese me way in back

The Naomi Shrine. The collage was put together by the juinors on the Varsity Bball team

Naomi and Dontae in our living room. She likes to make this silly kissy face anytime a camera is near her

Dancing Oliver-unfortunately off by 90 degrees

I decided to take a day off yesterday from running. Even when I was in 'good' shape, I'd take off a day before a long run but I felt guilty nonetheless. Must..keep...running. As penance, I ran a 10K today (6.2 miles), the longest I've run in 2 years. Aside from making my legs sore, it was relatively easy. Lots of goldfinches out this year on my path.

We had one last visit from Shanna and her family yesterday. Oliver is so cute!!! They will return in about 8 weeks for a wedding and baptism.

Steve and I took a walk yesterday in the arb to the peony garden, which is in full bloom. Thousands of plants! Also we walked through this protected glen which has a micro-climate suitable for mountain laurel, rhodadendrons and azaeleas, which also are mainly in bloom. Generally the mountain laurel can only grow further south-I've never seen it any place else in Michigan but it is very pretty.

So my worry-the scar on my breast hurts and forms a hard ridge. I am hoping that this is normal. During the 2nd surgery, they took a big slice out where the first scar was to test it (it was benign). Recurrences tend to occur along incision sites (so I've read). Hopefully it was just the radiation that made it turn hard. Silly cancer. Most of the time I don't think about it coming back but it remains in the back of my mind. Maybe in 5 years, I can rest easy.

In our lower level, we have an unofficial 5th bedroom where our adult children (and spouses) have lived, Shanna being the last occupant. She left her sizeable party dress collection-the Size Two rack, we call it. Naomi has been eyeing this treasure trove hungerly but at the very least, she is a size 7-she is about 5 inches taller than Shanna and has much bigger bones. Naomi has lost some weight recently and thought maybe the larger ones would fit her. She was very thrilled to find some of them that did-new dresses for her- but didn't want to wear them for graduation as she was afraid Shanna would be angry.

Party aftermath

License plate courtesy of la mia amica Jeanette, one of the few fellow non-Italians I met in Gagliano although she is married to a man of Italian ancestory. The my friend. Silly Italian grammar rules although I think I can drop the article if the friend is named. I forgot.

No more PMS for me but I suffer from the fallout from the seemily constant PMS of a certain redhead. I have always heard of a 'redhead' personality and didn't give it much thought -sort of like astrology as if your personality is based on your hair color vs birth date but she doesn't do much to counteract this negative stereotype. She is currently zonked out with her friend in front of the TV in our lower level. I found all the leftovers from the party in front of them this morning. No putting of perishables in the refridgerator for them. After many warnings on what would be acceptable behavior on my part, I was allowed to meet the infamous Dontae. In case I couldn't remember my instructions, I was given warning glares when I spent too much time in his presence. Josh did speak to him for about 5 minutes so I will quiz him later. We were lucky to have very nice weather. The adults and Oliver could comfortably sit outside while Naomi's friends stayed inside. So thank-you friends for coming. I will post pictures later.

Graduation Open House

My second grandson at 19 weeks

Tonight we are having an open house for Naomi. Still not sure if I get to meet the boyfriend. I have been warned several times not to ask too many questions or to laugh too much. I am just so embarassing.

I went with Shanna to our hairdresser for her haircut. I haven't had a haircut since July and felt bad that my hairdresser was left to wonder what happened to me. She said how much she liked my hair and then I lifted my wig a little. Oh.

As for hair, I now have an inch on the top. It seems to form a ridge along the top of my skull-a mini mohawk. Also this ridge divides mostly white on one side and mostly dark brown on the other-a harlequin head. My lower lashes are all grown in and 3/4 of the uppers.

Still trying to carve a reasonable body from this blob of lard. Ever see a really fat person and think-if I was him or her, I would just do this and this and this and get into shape in no time. Well I am that person now and it isn't that much fun though I am making progress. I've dropped 10 lbs and ran almost 6 miles the other day. I no longer go into major oxygen debt going up minor hills and I am alot firmer-especially my legs.

I was looking at names of cancer blogs yesterday. My favorite: Living la vida leuko! apparently about leukemia. The Uniboob Club, Stolen Colon, What's up your Butt?, Chemopalooza, As the Tumor Turns, Cancer Bitch, and onebreastbouncing.

My break from trying to whip this house into order is over.

Graduation

Lots of grads-EMU Convocation Center

The grad

So she is done-Ms. Naomi- with Ann Arbor Public Schools and so am I. It has been almost 25 years since Shanna entered kindergarten in 1984. Naomi entered kindergarten just as Shanna started her senior year. It hasn't been an easy time as Naomi has a significant learning disability that didn't rear its head until she was in 2nd grade. As a pre-schooler she hit all those milestones on time or early. She was fairly articulate, read fluently, drew and wrote very well for her age. Great fine motor skills and exceptional gross motor skills- a good athlete at an early age. She seemed much more advanced than Josh at the same age (and he is a very bright, successful adult-honor student in engineering) so I assumed I had nothing to worry about except for her unusual crabbiness. But even as she was able to read out-loud much more fluently than many of her classmates, she could not recall, if asked, what she just read. She was fascinated with numbers-she memorized long lists of phone numbers and addresses though not with the street names and could memorize a long list of spelling words quickly. She could not tell you what any of the words meant however. By 4th grade, she was falling way behind and I wanted intervention. It was very difficult getting an IEP for her as her disability seemed so unusual. Plus they were defining a disability as a huge difference between ability and performance and they were arguing she had no ability i.e. she was mentally handicapped. But she had pockets of ability-fairly high math skills so they couldn't really say that. Indeed, we had her in the higher math track in high school for a while and the personnel who were assigned to help her had less ability than her-presumably college graduates. For lack of a better classification-they said she had language processing disorder-both written and oral. She could not make inferences. She understands only literal language. A sample from an elementary school story problem:

Ms. Smith's class has 25 students. Fifteen of them are boys. How many pupils are girls?

Most 4th graders could handle this even if they didn't know that 'pupils' are another name for students-they could infer that. Naomi couldn't. She was confused and thought pupils had something to do with eyes and didn't know how that could fit in. Also if there was a piece of unnecessary information like 'Room 204 has 25 students ', she would somehow work the number 204 into the equation.

As time went on, the gap between her performance and her classmates became larger. As they kept repeating last night, Huron is ranked the number one academic high school in the state. I assume this is based on standardized tests, number of AP classes and the performances on the AP tests, etc. This makes the gap seem even larger. I have since noticed that her ACT score is about average if you compare it with other high schools' (other than Ann Arbor's) averages. They are fairly good at dealing with high ability students-plenty of them coming from very educated households-of course these kids teach themselves, but to deal with Naomi is another story. At best, she was given extra time on tests and I was able to intervene when teachers' instructions were not crystal clear-a big problem as Naomi misinterprets what seems obvious to everyone else. I also could pull her out of a class that proved unsuitable for her. I am trying to expand her limited vocabulary. She asks me constantly what does this and that mean. She is now reading for pleasure and has come a long way but there still is much more work to be done.

Shanna and her family drove 14 hours to be at the ceremony. As she is 26 weeks pregnant, she needed to stop to walk and Oliver gets very antsy confined to a carseat for so long. It was fun seeing him again.

After the very long ceremony, we all- Josh and Julia, Shanna, Oliver, Ramy, Steve, Naomi and I, went out to eat. Naomi was to go to the school's post-graduation party but got lost trying to find it (like everyone except myself in the family, she is directionally impaired) and decided to stay with a friend instead-hopefully the friend she said she was going to be with-we are having some trust issues now.

Back in CancerWorld, the ASCO meeting is going on in Orlando where all the latest cancer news is being presented. I haven't finished poring over the many abstracts with nuggets of info about TNBC (see http://abstractsearch.asco.org/?index=442064&calln=7&lastq=&sortsel=rel&opt=ANY&doc0=60&query=triple+negative+breast+cancer)

The biggest news that made its way into the mainstream news was the effectiveness of the PARP inhibitors against metastatic TNBC. In one case, they caused a cure. But I was trying by reading over the numerous abstracts to answer a few questions I have about this awful disease. They all start with that scary introduction, you know the one, with words like 'deadly' 'very poor prognoses' 'no targeted treatment'. I just have to plow past those heart stopping words and get to the messages, which are very mixed. Some examples:

1. No differences in survival in TNBC for chemo vs no chemo for Stage I patients. (with all their farting around, I went from Stage 1 to Stage 2. Thanks for that)

2. Where do mets first occur for TNBC? Lungs: 36% Liver 11% Brain: 11% Bone: 19% Skin 9.7%

Scariest of course, is the brain

3. Median time to distal (vs local) recurrences: 2.6 years Median time to death 4.2 years. All of this I assume is from the time of first diagnoses.

4. Asian TNBC patients have a more benign course of the disease than patients of other ethnicities-especially African Americans.

5. Numerous tumor markers predictive of prognosis-I've must have seen at least 25 different ones. The one that stands out are the Kis-the proliferative index. If this is high, bad news.

6.The tumor marker CAx (forgot the number) that rises with metastatic estrogen driven BC, does not rise at all with TNBC nor is elevated in the early stages. So much for trying to track the disease.

7. One research group developed a nonogram for predicting negative outcomes. Increased age of patient led to 'better' outcomes. Good for me.

This wasn't in the TNBC abstracts but on TV, they showed how one group at Mass General takes the patients tumor and studies its genetic background and tumor markers before deciding on treatment. They showed a 48 old lung cancer patient (non-smoker-they always like to include that info for some reason like you don't deserve any compassion if you smoked and got lung cancer) whose tumor was filling up her lungs quickly. They discovered some defect in its DNA similar to a skin cancer defect and gave her the chemo suitable for skin cancer. Tumor went away and the patient is thriving.

Lots of stuff that I don't have enough time to suss out. I need to be dealing with the graduation party and some other stuff instead.

Clutter

I do have a hard time throwing things out. I have numerous tubes of lipstick that have enough for one application if I somehow find tools to extract that, crossword puzzles that are a few clues from being finished, clothes that fit me 40 lbs ago that I hope to fit into again someday, etc. I've been trying to throw out at least one useless object a day.

Yesterday was a good lesson on what happens when hoarding gets out of hand. In the condo complex on the otherside of the road from our subdivision, an elderly woman who uses a walker, stuffed her condo to the gills with objects that she couldn't bear to throw out. Newspapers and magazines were piled all over the place. I am not sure how the fire started but it took them forever to get it under control. She was rescued. I guess her clutter problem is now gone for now. These are attached condos so there was the danger of it spreading to the neighbors', who were not amused by the side effect of this hoarding. Although we live a half mile from this condo, the smoke filled our house. Most of the Ann Arbor City and Township fire trucks seemed to be there. When the ambulances started coming, Naomi wondered if Morgan's water didn't break or something (she lives in the complex too) but then we smelled the smoke.

My parents were hoarders and had a large house so it was fun dealing with that when my father died. Unfortunately, in this house was a squatter who was a hoarder also. Many of the objects we had thrown in the dumpster he managed to retrieve in the 2 months it took to get him evicted and the house had to be emptied of trash again. It still amazes me that somehow he had 'tenant rights' because my father had invited him in (and then wanted him out). Lessons learned: Be careful who you let in your house and don't hoard.

So I probably won't die of this evil disease and should make plans for my life. Up to now, my attitude has been, don't worry about it until you have to. If you think you are going to die, worries about disappearing 401Ks seem to take a backseat.

In the near term, Naomi is graduating tomorrow. Shanna and her family will soon start the long drive out here ( I am always nervous when any of the kids are out driving). I wanted to have a party for her Saturday but Naomi insists on going to this Motor City Jamfest so Friday evening it is. Naomi still hasn't let me meet Dontae as I am so embarassing and can't be trusted not to ask too many questions. I reminded her that the other kids had their high school sweethearts on family vacations with us and both of them had moved in with us at various time. (Josh's high school sweetheart is now his wife Julia). Dontae does want to come Friday though so maybe I will get to meet him. Naomi thinks she is going to marry him but she is very immature and really isn't prepared to deal with many aspects of life. My short term goal is to work on that. I had taken her cell phone away as she couldn't find a way otherwise to limit her texting. I was soon getting messages from her from a friend's cellphone. Whose phone is this? Oh Monica's. Hmmmm, this seems to be the same number that you speak to every night for an hour, you sure it isn't Dontae's? She finally admitted that she had Dontae's cellphone now but she was not with Dontae. Now she can't have sleepovers anymore either. Note to liars everywhere-don't lie when you can be caught so easily.

The cool weather makes it easy to run. I am now running more than I did before the cancerfest started but I was having trouble with my thyroid levels last year. It is amazing how much drugs interact with each other. I had taken the same amount of thyroid replacement for years but last year it turned out not to be enough and my TSH levels shot up (the more TSH, the more HYPO thyroid you are-I have no thyroid-it was ablated with radioactive iodine as it produced too much hormone due to Graves' Disease). Due to my broken arm, after I was deprived of narcotics, I relied on ibuprofen to stop the pain. This lead to heartburn which led to me consuming lots of rolaids (calcium) which ties up the thyroid hormone I take, which led to being hypo. The pain went away, I stopped the ibuprofen and the stomach repaired and I needed less rolaids. I did have the onc check my thyroid levels before taking Adriamycin. Too much thyroid can damage the heart and I didn't want that to happen while possibly damaging my heart with the Red Devil too. The test results were mixed. Low levels of TSH which indicated too much hormone but the hormone levels themselves seemed to be low. I am waiting to be retested by my primary (who I should fire at some point). I am guessing I am OK as I recover so quickly from my runs.

Still no hair excepting the fuzz. Shanna has made an appointment with our haircutter during her visit here this week. I haven't seen our haircutter since July, who probably has wondered what has happened to me. That mystery will be solved for her soon.