Laws of Attraction

One of the more annoying books out there is The Secret whose premise is that positive thought manifests itself in success. Conversely negative thought manifests itself in all sorts of negativity including..you guessed it. I don't try to have a 'bad attitude', I realize it doesn't make me too much fun to be around so I try to keep my whining to myself. But it's my blog and I'll whine if I want to, whine when I want to..

If the bad attitude police scoured the blogs of those saints Cari and Shin (and countless others), they would find them the epitomes of rightthink but still cancer killed them right in the beginning of raising young children. Cari writes in her blog: people always ask, "why me?" I ask why not me, I can take it.

Shortly after chemo began, I attended the Look Good, Feel Better program put on by the ACS. (I highly recommend it-according to a recent article, hardly any women are signing up for it around here. Did cancer suddenly disappear?). After the official program was over in which we received ~$200 worth of make-up, they let us try on wigs (usually not part of the program). I thought the idea was to see what style we looked best in so we'd know what to look for when we got our own wigs. I found a brown pageboy with lots of blonde highlights that looked really good on me. Another participant saw me with the wig and asked to try it on. Sure, why not? It looked real good on her too. As she was admiring herself, the program director came over and asked if she wanted it. Of course she did but I had grabbed it first. Now should I be nice here? The program director said not to worry, she was sure she had another one just like it somewhere and left us for 15 minutes alone.

My potential wig twin was a real sweet woman from Ann Arbor that I haven't run into since. Suddenly she turned from smiley woman to angry woman. This is so unfair!!! I don't deserve this. Look at me. I'm thin, never smoked or drank, exercised, ate right and now I have cancer!!
Yeah and I suppose I deserve this because I'm overweight (and drank and didn't eat right and took those hormone pills so I wouldn't feel like a dried-up old lady and..and..had negative thoughts... )No dear reader, I didn't say any of that, I just mumbled something non-committal, yeah it's unfair.

They didn't have the same wig but a similar one that was nearly my own color (or the color that I like to delude myself into thinking I had) so we both won in the wig game though not in the getting cancer game.

Recently I came across an interesting blog (Kicking cancer's ass: http://kickingcancersass.blogspot.com/)written by a young woman diagnosed at 29 with Stage 4 breast cancer. She had her first child when she must have been 16(so much for early childbirth preventing breast cancer). This is why she thinks she has breast cancer.

I have to put my public statement out there about wire bras. Due to the nature of my injury and the physical presence of a scar I know without a doubt that a wire injury from a bra in around 2005 caused the cancer that I am now facing. I know what your saying, it was cheap. No, I got this bra at Neimans. So it was not cheap. I was cut along the side of my left breast. It was a pretty good cut. It ended up healing and there was a scar but nothing major. Just like when you get a good cut anywhere it leaves a scar. This is where the cancer is now. The main area. I have told doctor after doctor this. All they say is there is no proof one way or another. I tell them I am the proof. When I saw the mammogram of my left breast, all you can see is a big black mass. I asked the doctor last time if they can differentiate the scar tissue from the cancer. His answer was NO! Can you believe that? Scar tissue comes up black. Cancer shows as black. Its all together. This is where is started. I want to tell all the women out there that if you get a wire injury from a bra, get it looked at and documented immediately. Sad thing is, I can not go after anyone for liability because the statute is really short. I couldn't even go after the doctors who misdiagnosed me because of the statute. It sucks. I know I would not have had a hard time proving my case. I actually was talking with several lawyers, but by the time they got back with me it was on the edge of the timeline. It wasn't long enough for anyone to gather a proper case together. So I have to just get the word out about this finally. I say I don't know why I am dealing with this, but I do actually. Its because of a wire bra. Just be careful out there ladies!

Three years ago, she was given 6 months to live. She believes she is alive due to her attitude as a fighter. Maybe. She is trying to have implants now but the insurance company is balking at paying for them given that she is Stage 4. As for inflammation being a cause for breast cancer, no connection yet established for breast cancer but it is surprisingly a huge factor in other cancers. See this month's Cure. (http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/15)
This being almost October in which we will be covered in pink everything, they also feature BREAST CANCER. They have a very thorough article on where treatment for TNBC stands. No surprises for me there as I try to keep up with new literature. But it also detailed which antidepressants interfere with the action of Tamoxifen. Apparently Tamoxifen is converted to its active form by an enzyme that most people have but certain antidepressants inhibit this enzyme (who would have thunk) leaving these women with all their estrogen unblocked to stimulate their estrogen positive tumors. Of course there are plenty of depressed women who take Tamoxifen...

grandbabies

Shanna finally sent some pix of the boys. Oliver is now 20 months and Daniel is 6 weeks.

il vento

Stresa on Lago Maggiore A short train ride from the Milan airport

Today we have a high wind advisory. The wind is breaking my cosmos trees (supposed to the small 3 ft tall variety but for some reason are 6 feet tall-again bad fertilizer encouraging leafy growth vs flower growth) and made my run difficult. I actually experienced that rare sensation (for me) of 'cold' as the wind whipped against my wet body (it's also raining) Fall is here, too bad. But it felt good when I was done.

Trying to find a time in Milano that a trade show isn't there. It's fun to plot and plan.

Vacation every day

Sandhill crane taken a year ago with a camera phone. The crane assumed it was food and took a bite out of it

This is how my patio should look. I have even more plants this year but only one morning glory blossom to show for it.

So this week marks the 2 year anniversary since I went in to work because they shut my entire work site down. How do I spend my time, I'm often asked since every moment of my life used to be spoken for. Time fills up quickly and I've yet to be bored as there is so much I need to be doing. The first year seemed to be filled up with the wedding, dealing with estate issues, spending 5 weeks in Italy, visiting my grandson, etc. This year..CANCER. Still dealing with insurance issues though the latest bit was one part of UM telling me that since they have a contract with Aetna, any charge disputes should be between them and UM and I shouldn't be sent bills and nor should I have to wrack my brain justifying the extra expense. I will appeal on the grounds of cost. The average radiation treatment is 30 days: not 16. Because I got more radiation per day, it was extra important to have these port checks ($1500 of extra ones) But I saved the insurance company $14000. Shouldn't I get credit for that?

When I used to have vacation days, I wanted to make every moment count..no wasting of precious time. Now I sometimes feel the same but as in, these MIGHT be the only days I have left as a healthy person, better make them count. I will go to Italy in 11 days. I'm very much looking forward to that.

I've been seeing friends alot lately. Thursday, some ex-coworkers who transferred to England stopped by and I met up with them along with some other ex-coworkers. Most didn't know I had cancer. I feel strange showing up with my short curly weird hair. Steve and I had gone out to dinner with them when we were in England in 2007. It was fun listening to their take on English culture (they are from New Zealand).

Friday I went to the mom's group (a post partum support group for 30 year old babies) which is always fun.

Saturday I ran in the morning and later went for a 22.6 mile bike ride with a friend. Beautiful fall weather. We came across some sandhill cranes. Until the past 6 years, these were quite rare around here but I am thinking that they are no longer an endangered species as I come across them more frequently.

Today Steve and I went out with Josh and Julia with a rare appearance from Ms. Naomi. She usually doesn't like to go out to eat with us but maybe there is a food shortage at her place. Since she's moved out, she has come here almost every day. There's an old country song that comes to mind-How can I miss you when you still haven't gone? I had worked out on weights earlier. Since I did two aerobic workouts the day before, my body is ready for a rest.

Then I have my childhood friend living in my lower level as she tries to find a suitable place to live. She has taken over some of the gardening tasks I've neglected.

I just got an e-mail from my office mate I hadn't seen in 5 years. He used to be my biking buddy too. He's coming into town this week and we'll get together.

Finally a solitary morning glory bloomed today. I have vines entwined all over my patio but for some reason, no blooms due to using the wrong fertilizer ( I guess). As there are now quite a bit of buds, maybe I will see more blossoms before the frost kills everything.

Cari

Cari was only 34 years old when she was diagnosed with TNBC. She was a writing teacher who was taking time off to care for her 3 young children. Although her nodes were clear, a year after her initial diagnosis, it had spread to her brain. At the time, the tumor was readily resectable and just a single tumor. Shortly after her surgery, TNBC cells were discovered in her spinal fluid. Tumors developed which could not be removed. She was treated with additional chemo but there was no stopping the spread. She died this Tuesday at the ripe old age of 36. She writes about all of this candidly in her blog http://undomestic.blogspot.com/.

For TNBC, distal recurrences occur in the lungs (36%), bone (19%), Liver (11%), brain (11%) and skin (10%). But once it shows up in one place, it usually ends up in another place soon.

For estrogen positive cancers, bones are where it usually first shows but eventually it will spread to the lungs and/or liver, just usually alot more slowly than TNBC. All very awful and scary.

It suddenly became cooler and less humid here. I am glad. Trees are starting to change colors I noticed when I did my long country run this morning. The new feeder a friend gave me finally has attracted Ms. Hummingbird. She has turned up her long beak at the other feeders I've had though she comes for the flowers. I found a former LiveStrong classmate at the Y yesterday who I barely recognized. We both have alot more hair and have lost weight.We had a nice chat about post-cancer life.

Later today, I go to a reunion of ex-employees of my former company. The New Zealand couple who transferred to England and whom we met up with in England when Steve was assigned to work there 2 years ago are in town. Should be interesting.

Hot Tatas

When I first was about to have chemotherapy, I read about cold caps that would cool the scalp. Cooler areas get less blood flow and thus less chemo. One could possibly preserve one's hair this way. But if for some rare reason, the cancer had metastasized to the scalp, the cancer wouldn't get the chemo either. Some recommend sucking on popsicles during chemo to lessen moth sores. I sucked on lemon Popsicles to try to mask the taste of the Red Devil. So creepy to taste it!

But if cold decreases chemo to a given area, wouldn't the inverse be true? Recent research shows that indeed it is. Presumably warming the area that the cancer is thought to be in increases its exposure to chemo with much better results. Thus the tata warmer!

It is so nice not to have a sensitive scalp anymore. It was so sensitive that the little hair I had hurt it by its weight. I never could let the shower hit my scalp directly.

Bras for 1 and 2/3 breasts

The above is an advertistment Naomi created for my daughter in-law's speciality pet store. This was when she thought she might become a graphic artist. Pictured on the left are the families' dogs including Spud as a pup (now a geezer pug) and Sunny. Sadly, though the store did great for a while, the economy did it in but it did provide employment for Naomi for a short while.

Certain things I hate to shop for but my bras were becoming quite raggedy and also all purchased BC. But finding one that deals with my now lop-sidedness was alot of fun. I suppose I can buy a partial prosthesis. Also I hate the harsh lighting that makes me look even scarier. I do appreciate the 'skinny' mirrors. You know, the ones that are just slightly distorted so you think, hey I don't look so fat in this so you buy it but when you get home, back to reality. But I'm all set for bras.

I notice now women with shorter hair than me who actually look like they have short hair on purpose not because they were fighting a deadly disease. It now is a loose salt and pepper afro. I can't believe this stuff on my head so unlike what I had before. Perhaps I can get Stephanie, my neglected hairdresser to deal with it before I go to Italy in 2 weeks. She once had a stint as a movie hair person. Two of her credits were Escanaba in da Moonlight in which all the actors looked like they lived in deer camps forever and 61, a baseball movie in which all the principals had crew cuts. I'll be more of a challenge.

It was warmer and still as humid (dew point!) but a breeze made it more comfortable for running. Still I noticed I seem to be getting slower. Maybe I've exercised too many days without a break.

Baby Daniel is doing fine and grew a few chins so he is probably gaining weight. It turns out his hips were not damaged by his weird position in utero or by the extremely rough attempts to extract him. His one leg was dark blue from the bruising as he was grabbed. He still has light blue eyes. This is Shanna's first week dealing with the boys alone but so far, so good though they are never asleep at the same time. Her friend since first grade and one of her bridesmaids is pregnant now after quite a struggle in which they were going to take a break from useless medical interventions and then it happened all by itself.

Saskatoons

Daria is one of my blogging buddies from Western Canada. She recently wrote about a neighbor (neighbour to her)bringing over a Saskatoon pie. Huh? She did provide a wiki link (http://en.wikipedia.org/wiki/Amelanchier_alnifolia) and it turns out that the name for them around these parts are service berries. Oddly enough, I had some for the first time a few months ago. A friend and I came across a mom and her two kids picking berries from a city bush adjacent to a parking lot popping them into their mouths. They sort of looked like blueberries. The mom assured us that they were 'safe' and she's been eating them for years. Now my friend just loves free berries found in the wild-especially mulberries and the various sorts of wild black berries found around here started to eat them too. I was not impressed as it had a huge tannic seed in the center but perhaps the Canadian cultivar isn't so seedy. But according to the wiki, they are very nutrious, full of antioxidants and various vitamins. Native Americans used them quite a bit.
This same friend was thrilled to find beautiful oranges lining the streets of Sevilla, Spain. Ooh, more free food! But pretty as they were, they are intensely bitter. The English use these oranges for marmelade.

Peacock

Yesterday my friend and I were riding bikes about 3.5 miles from my house when I noticed a large turquoise peacock on the top of a car. Someone used to raise them on one of my running paths years ago ( I was totally freaked out when I first heard their shrieks) but this was in another area. As we were riding, I could see black clouds rolling in quickly. We hadn't had rain in 2 weeks but for this week, every day it is forecasted. Still I got a run in early this morning in the mist. Towards the end of my run, a car pulled up along side of me and the driver said something about her hoping that 'he' didn't see me running . I focused through my rain-drop covered glasses to see that it was Naomi driving Dontae's car. She had driven him past me 5 minutes earlier (didn't notice). Apparently he likes to critique runners but fortunately for her, his attention was on his cellphone. She stayed around for me to help for her math test tomorrow and to pick up the microwave Steve bought for her.

Transitions

This week has been full of change. When I think how much my life has changed in the last 2-3 years, it makes my head spin: losing our jobs, losing my mother, 2 marriages of our kids, 2 grandbabies, and of course CANCER. In the weeks before Naomi moved out, several times she would angrily say how once she moved out, she wasn't coming back and furthermore, I was not to come to her apartment. To ensure this, she wasn't going to give me the address. Well two days after the big move, she called for me to pick her up (she can only have our car to get to work when she actually gets a job). The bus pass I got her doesn't help much on weekends as the nearest route, going up and down Huron River Drive, operates only during the week but it can get her to school in 10 minutes. Of course she still wasn't going to give me the address, mainly because she never bothered to learn it and for extra fun, couldn't give me the name of the road she was on. I just got generic instructions about turning this way or that after THE stop sign. No north or south or useful hints. I knew where the complex was but it is quite large. I ended up parking in front of the office and told her to meet me there. She was pissed as it was a walk for her but in the absence of her knowing directions even in respect to the river which runs by her place (now is that turning left as you face the river or away from the river) I had given up trying to find her by happenstance. The complex is old and the buildings are quite run down. The place seems to be populated with a mix of low income families and university students (it's on the edge of Eastern Michigan's campus and not far from where she goes to school). She was quite proud of the apartment which at least was recently refurbished with new paint and flooring. There is absolutely no furniture in either the living room or dining room. They eat sitting on the mattress that I provided, which is on the ground. It does have a nice big screen TV and video game selection. Dontae's friend lives in the other bedroom. They will gradually acquire furniture. We will give them a microwave today and maybe some dishes. They have 3 bowls between the 3 of them purchased at the dollar store. They have utensils purchased by me on our IKEA run. They did buy bedding and a lamp which shoots their September budget. But she is excited to be living there. I still think she'd have more fun living with girlfriends. Under Dontae's rules, no drinking and no going to parties. She even has to be careful the way she dresses as she doesn't want to be accused of attracting boys. She attracts them anyway.

She came here to work on a project for her communication class. She is so far getting an A in chemistry. I did feed her lunch but she wouldn't eat dinner. I do worry if she is getting enough food.

I had lunch with Josh the other day at our favorite Japanese place, which seems now to be many people's favorite so we had to wait. He had recently went to a wedding of his wife's best friend (Julia was the matron-hah-love that name-of honor)The mother of the bride, a very strange woman, had requested that Julia put off any child making plans to ensure she's fit into this tiny dress. She almost got pregnant to spite her. (Wish she did) Both the bride and groom had gone to the rich kids' school in Ann Arbor and many of the guests had gone there also. Since the public school (Huron)is considered the top academic school in the state (not so important with Ms. Naomi), one has to suspect that the homogeneous culture of the rich kids' school is the drawing card with their parents. As this was a 'destination' wedding in a northern MI resort, the guests spent several days there. Josh knew some of these kids from long ago (travel soccer and one actually had lived in our humble neighborhood). Many of them went on to top colleges but Josh had trouble dealing with them. The Rich are different from you and me.(Great Gatsby) They seemed to be very immature to him. Josh is a very social person: bright, friendly, athletic, and very handsome and always was in the 'popular' group in his schools. He told me that he was glad he went to Huron, which along with having the richest and the brightest, also has the poorest and is a United Nations of different cultures. (Given that the rich kids' tuition was the same or more as his private college tuition, this wasn't even a possibility). It was interesting listening to his insights. Of course when he was in high school, he was intensely aware of rich kids and had a rule that only the neighborhood friends could come to our house (as they obviously had nothing better than us). A second hand car we purchased for Shanna had faulty windows that were held up by screwdrivers strategically placed. It was requested that I never show up for travel soccer carpools (full of rich kids) with that.

Another beautiful day here in post-cancerland. I will go biking later today if it doesn't rain. If it does, I will take a break from 3 weeks of exercising every day. I ran more than 30 miles in the past week. I went to a friends house again the other evening enjoying the antics of the hummingbirds and the deer who routinely gallop through her yard especially in the evening. I have my own hummingbird but I am lucky to see it once a day. She gave me a feeder which her hummingbirds prefer to any other feeder or flowers. I'll see if I can attract more hummingbirds. They are so fun to watch.

The last one flies out of the nest

I had my babies in 3 decades: 79, 82, and 91. Although being spaced so far apart means I never had 2 in diapers at the same time ( like Ms. 79), I was committed to 30 years of child-raising. Today Naomi officially moves out to start her new life though she chose to spend her last night with her girlfriends. Is she prepared for this? No way, she has little idea on what she is getting into. I did agree to help out with a few things so part of the day was spent in IKEA with her. She has been so crabby lately that it will be a relief not to listen to her go on about this and that all the time.

We don't have a completely empty nest as a long time friend who is between living situations is staying here now.

I went to the cancer survivor cooking class with Marilyn later. Even though she got out of treatment earlier than me, I think my hair actually is longer, if longer is the term as my hair grows up, not down. It does not obey gravity. Her hair now does look like mine though BC (before cancer) our hair was completely different. The instructor had had TNBC too (and another kind of BC on another occasion, totally unrelated). I am always happy to hear of someone surviving TNBC. One of the supporters (they are allowed to come too)there gardens and seemed to have the same problem with his flowers as me this year and went to a master gardener. We are both using the wrong fertilizer around the cosmos and morning glories giving them too much foliage and not enough flowers. He gave me a fix to that problem. The subject of the class was 'healing herbs'. Had apple mint salad and some sort of rosemary cherry dessert among other things. She puts thing together I never would have tried.

I ran my 600th mile yesterday for the year. Usually by this time it would be closer to 1000 but chemo made me cut way, way back. I was walking instead and even that was hard. I was breathless walking up the small hills around here, never could imagine that. But running especially now with cooler weather isn't hard at all and I recover very quickly.

Metformin

Metformin is the generic name of a diabetic drug formerly marketted as Glucophage. It had been noticed that patients who had cancer while on this drug had less recurrences than patients not on the drug. It is now in clinical trials as an add-on with traditional chemotherapy for breast cancer. Some cancers arise from cancer stem cells (discovered at UM) and these are very resistant to chemo but metformin seems to starve them by altering the glucose levels they seem to be dependent on. A little bit of hope there. This was in today's Wallstreet Journal.

Also in the popular press (Newsweek this time) was on how how some hormone disrupters such as the bisphenols found in plastic bottles and even an ingredient in soy (gentisen?) cause cells in developing fetuses to become fat cells leading to fat babies and adults. We as adults now weren't exposed to these substances but lots of young kids were with bad results. Don't feed soy milk to babies the article concluded.

In the scientific press from the research institute that my son-in-law works for (Broad Inst), I found an article that addresses how estrogen can lead to estrogen negative breast cancer. Young women are at a greater risk for breast cancer in the year following pregnancy as their breast tissue was stimulated quite a bit by hormones so that they could nurse. But what kind of BC do they get? Not estrogen dependent as you may have guessed but estrogen negative. If you are interested, here's the abstract:

Contributions of estrogen to ER-negative breast tumor growth

References and further reading may be available for this article. To view references and further reading you must purchase this article.
Piyush B. Guptaa, 1, and Charlotte Kuperwasserb, ,
aBroad Institute of MIT & Harvard, 7 Cambridge Center, Cambridge, MA 02142, United States
bDepartment of Anatomy & Cell Biology, Tufts University School of Medicine, MORI, Tufts-New England Medical Center, 136 Harrison Avenue, Boston, MA 02111-1800, United States
Available online 16 October 2006.

Abstract
Breast cancer is a hormone-based disease with numerous factors contributing to the lifetime risk of developing the disease. While breast cancer risk is reduced by nearly 50% after one full term pregnancy, women over the age of 25 have a significantly greater risk of developing breast cancer immediately following parturition compared to their nulliparous counterparts. It is widely presumed that the increased risk of developing breast cancer following pregnancy is due to the ability of pregnancy-associated hormones to promote the further proliferation of an initiated target cell population. It is surprising however, that the majority of breast cancers that develop following pregnancy lack appreciable expression of either the estrogen or progesterone receptors. This important observation suggests that if hormones play a part in promoting breast cancer following pregnancy, they may not be doing so through direct binding to hormone receptor molecules expressed by breast cancer cells.
To reconcile this conceptual conflict we investigated the hypothesis that steroid hormones promote the outgrowth of ER-negative cancers by influencing host cell types distinct from the breast epithelium itself. We demonstrated that increasing the levels of circulating estrogens is sufficient to promote the formation and progression of ER-negative cancers while, pharmacologically inhibiting estrogen synthesis following pregnancy prevents ER-negative tumor formation. Moreover, we demonstrate that the effects of estrogen act via a systemic increase in host angiogenesis, in part through increased mobilization and recruitment of bone marrow stromal derived cells into sites of angiogenesis and to a growing tumor mass. Taken together, these data suggest that estrogen may promote the growth of ER-negative cancers by acting on cells distinct from the cancer cells to stimulate angiogenesis.

So maybe that Prem-pro did lead to my TNBC.

My little grandson is 4 weeks old today. He now has a social smile even though he lost his foreskin last week. How time flies! A nice running day too.

thieves

Someone took Steve's credit card number and ordered $450 of stuff online last week. I would be curious to what address the stuff was sent. He told them that he wanted to cancel the card. Why? they asked. Duh!!!While I was recovering from my surgery last year, someone openned a Sear's acct using my driver's license (which hadn't left my possession). They had my address and my SSN. I am assuming a bank employee.

When I can't sleep in the middle of the night (often), I do Italian exercises. Hopefully some of this stuff is penetrating my brain. I did have a dream in which I kept saying A che ora parte il prossimo treno? (what time does the next train leave) but trains kept coming and going without me on them. It could be that I wasn't even in Italy and that's why noone understood me.

Today is the warmest day of the week but I had a nice run. Not nearly as sore from biking as I was last week. Then I spent more than an hour hacking away at all the blackberry vines that invaded my yard. I filled up the huge lawn recycling container to the top.

Naomi is going furniture shopping with Dontae. Wish she'd just stay here.

Love Alicia Key's song: Dontcha Know (http://www.youtube.com/watch?v=uMQ66HyENpo&feature=related)

The Road to Hell is not paved with good intentions...

I now have enough hair for 'helmet hair'

We went to Hell today, a very small village in Michigan popular with bikers, both the motorized and unmotorized ones. Home of the Dam Site Inn (there is a dam).

It was a nice day to bike as there was no wind. In Michigan, they are gradually converting abandonned rail roads to public rightaways. There is alot of resistance to this from adjacent property owners but for the public as a whole, they are a good thing. The Lakeland trail is for bikers, runners, walkers, equestrians and in the winter, skiers and snow mobiles. A good portion has been paved, then there was a section of hard packed dirt but it finally became a sandy pit that was very difficult to ride through. Finally I proposed we take some dirt roads and go to Hell as my friend never has been. She is new to biking and thus to Hell but every year, there is the Ride through Hell. For runners, there are various Runs through Hell and in the winter, there's a run called When Hell Freezes Over. I've done them all. Yeah I know Hell, all 400 square feet of it. It is surrounded by state land and a UM nature preserve so the area is really pretty.

So we went close to 26 miles. This time we were prepared with gloves and gel seats so we'll be less sore. Biking is different than running for me. It is much more relaxing but it takes so much longer to get the same workout.

We stopped at a farmer's stand where I bought a basketball size bright yellow cauliflower. I've seen orange, green and purple but never bright yellow and never so big. I cooked up a small part of it. Very tasty.

What color is your tumor?

If someone had asked a year ago, what color the inside of a tumor was, I would have guessed red and gray. When they did the biopsy, I asked to see the tissue specimens: 5 quarter to half inch strings of vermicelli (Italian for little worms)with little streakings of blood. They didn't look evil to me, just strings of fat. The entire mass was white inside as the pathology reported stated. I had read somewhere that capillary density was roughly proportional to VEGF, a protein that causes the tumor to obtain a blood supply so it can grow (Avastin targets this). The more VEGF ones tumor has, the worse the outcome. I had asked the surgeon later if removal of the tumor was especially bloody (meaning that the tumor managed to conscript lots of blood vessels feeding it) and she said no more than 'usual'. I grasp at any straws that might indicate an increased chance of survival.

VEGF is not the only angiogenesis factor. One can block it and slow the tumor's growth down but eventually it figures out other ways to get a blood supply.

The blood vessels that feed a tumor also can carry tumor cells to other parts of the body. In general, for a given tumor size, TNBC is less likely to be found in the nodes that hormone positive BC. No sigh of relief there though as it is more likely to spread in the blood stream.

Yesterday at the support group someone asked what kind of tumor I had: invasive intraductal carcinoma. Yeah but what kind? That is what kind, the kind that 70% of BC patients have. She had a rare type: papillary which generally has a good prognosis but it had mixed cell types and they were unable to ascertain what those mixed cells were until they could grow and possibly do her damage. Thus she was not a happy camper.

I was sad yesterday between the bad news in the mail and the feeling that maybe I am not out of Cancerland.

Cancer aftermath

Even though I am finished with treatment, the aftermath of my treatment remains. Today I received a threatening letter from UM for the unreimbursed x-rays: Pay up in 10 days or it goes to a collection agency and your credit will be impacted. Put a call in to remind them that the charges are in appeal. We have since enrolled the help of the corporate plan administrator who is finding out exactly what we need to do to file a successful 2nd appeal. Again called the physician to see what help they can be in explaining why I needed more port checks than what Aetna believes is necessary. They presumably never ran into this problem before.

And if that wasn't annoying enough, it seems that Naomi got a speeding ticket while we were in MA in exactly the same place she's been warned repeatedly to slow down in. I guess she figured since Dontae paid the ticket, we wouldn't find out about it. Also she found out it will cost an additional $500 in insurance.

Triple Negative in Black Women: I read today that the 5 year survival rate for Black women with TNBC is only 14.5%, which is unbelievably low. I am not sure what it is in white women but I assume its higher but less than the 70% for BC in general. In Ghana, 60% of all BC is TNBC vs 15% here. They are assuming there is some nasty genetic component besides BRAC1/2 that makes it so deadly.

I did go to the support group for BC survivors today. More ladies than usual. One is fighting possible recurrences with a macrobiotic diet that appears to have no protein in it what so ever.
I do like the social worker who also has travelled quite a bit in Italy so we talked about that at the lunch they gave us.

Serenity now.

Canncerversary

A year ago today, my tumor was discovered. I had no symptoms that I can remember though after I learned of it presence, I felt an itching inside but maybe I ignored this. Somehow as soon as I entered the doors of the place, I was overcome with a feeling that something was wrong, which did not happen in the past so maybe deep down I knew. They retook numerous mammograms not saying a thing other than wait. I was there 4 hours while other patients came and went. Finally I was told they needed to take an ultrasound and there was my tumor the size and shape of a grape-not big-only 1.6 cm. I tried to ask the radiologist if there could be a benign explanation for this and she sighed as if that was the dumbest thing she ever heard and said she'd set me up with a biopsy. Note to UM: Some training is needed here. This woman has no business interacting with people.

Even though as I later read, there could be many benign explanations for this lesion, I just knew it was cancer and went straight into hysterical self-pity. Unfair! Unfair! Unfair! Too young to die and even my sick relatives got more time than this. I had been taking Prem-pro and threw my remaining packs away. Did this cause it? As it turns out, probably not. When I had the biopsy TWO weeks later (many centers give them on the spot-UM still clings to that dangerous, especially in my case, notion that you had cancer for years and 2 weeks won't make a difference-maybe if they keep repeating that, it will become true but there is no evidence that it is), it was no surprise to me when the positive results came back. A few days later, more results were in and they were even worse. The tumor was triple negative and my only hope of surviving would be chemo. In the bible of breast cancer, Susan Love doesn't even mention TNBC as the term had not been coined until after she published but she does refer to tumors that are receptor negative that are aggressive, deadly, difficult to treat, death sentence..blah, blah, blah that didn't exactly fill me with hope. Going on the internet showed more articles always prefacing with the words 'poor prognosis' 'deadly'. My mom had BC when she was 64, estrogen positive. She had surgery and radiation followed by 5 years of Tamoxifen. End of story.

I think the bleakest time was that first month learning of this whole thing. Worse than the 2 surgeries, worse than the chemo and radiation to follow. Why did I have 2 surgeries? Because in the month between the first mammogram and surgery, this thing had doubled from 1.6 to 3 cm so bad margins and according to their nifty computer programs spitting out prognoses, decreasing my survival 10% or more. I went from Stage 1 to Stage 2A in a month. They are still sticking to their tired 'had this for years' 'tumors just don't grow that fast'.Babies grow that fast and that is controlled growth.

This must be something they learned from lawyers versus actual science. They assume it was a mis-measurement at the start. How hard is it to measure a stationary object? They had the dimensions down to a millimeter.

Even their (the one they use which is a widely used commercial program) prognosis computer is suspect as the data in it is old. Her2 positives are lumped together with the negatives. Only in the last few years did the early stage her2 positives get treated with Herceptin. Ten years ago, the tests to identify them were faulty. Dose dense therapy has not been around for long either so it is now impossible to predict the long term outcome of TNBC. In the short term, though, TNBC is an ugly beast that if it comes back, it comes back soon-mainly in the first year. After 3 years, it is probably gone for good.

So I survived the first year. In 2 years, I can breathe easier though deep down, I think it is gone. Unless one is node positive, thankfully I was negative, they don't screen for metastases. The screens are full of false positives and false negatives. There are no clear markers identified yet for TNBC. They do watch for local recurrences every 3 months as they are something they can do something about. Catching distal recurrences early has little benefit: one just knows that ones days are numbered for a longer time. Distal mets are very difficult to control but fortunately new agents are popping up even effecting a cure such as the PARP inhibitors. Meanwhile we are to watch for symptoms. Bone pain-fortunately rarely below the knees and elbows so pain in the fingers is probably arthritis, not cancer. CNS symptoms such as headache, dizziness, double vision, etc. Liver mets: nausea, weight loss. Lung mets: a tough one as it spreads silently but unexplained coughs. Lung mets are the most common in TNBC. I figure that if I perform at the top of my ability, I will notice if suddenly I can't perform as well. I can run for over an hour without huffing and puffing like I did right after chemo. These lungs seem to be working just fine.

I hate it when people go on and on how glad they got cancer because they learned such valuable lessons. Maybe I have a bad attitude but I am not glad I had cancer. It was terrifying and has left many scars on both my person and psyche even though I recovered much more quickly than most. I am very thankful for the support I received during this whole ordeal especially my husband Steve who waited on me hand and foot so I didn't need to lift a finger and who spent hours arguing with insurance agents, to my children Shanna, Josh and Naomi who tried to make me feel better. Shanna and her son flew out during my first surgery to keep me company. Josh took me out almost every week so I would have some change of scenery and Naomi, who really wanted to quit basketball, played it anyway and made me proud during her season that coincided with my chemo. My friends who brought flowers, little gifts, videos, meals, various goodies and most of all provided company. They even decorated my X-mas tree when I was too tired from chemo to consider even moving. I am thankful for the on-line community for being on my blog trying to cheer me on and share their experiences with me. I learned more from them then anything I learned from the doctors. I am thankful for Lesa in MA, who doesn't know me from squat except as a fellow BC survivor who still sends me these beautiful hand-made cards to cheer me up. Although UM has a long way to go in becoming an ideal treatment center, I am thankful for my principal doctors, especially my onc Dr. Henry who patiently answers all my questions and is never condescending. I also appreciate the Wellness Community with their many support functions: support groups, yoga, tai-chi, and their cooking classes. The local high schools' women's basketball team held a fundraiser this year to benefit LiveStrong. Many of my friends came out to watch the game wearing the LiveStrong T-shirts even though they weren't sports fans. Naomi had a great game and they won. It was a highlight of those bleak winter months of chemo with people buying raffle tickets and donating them to me even though they barely knew me. I did go to the LiveStrong program at the Y and it helped me become stronger faster. The ladies there are very supportive and always visit me when I go back there. They also provided a scholarship so I could return there.

It has been quite a year and I am so ready to move on. I will continue this blog but it will be less cancer related as cancer becomes a smaller and smaller part of my life.

09/09/09

I thought that this would be a good day for Daniel to be born, not his due date (9/11) or tomorrow (9/10) as the last 2 dates have very negative memories for me. 9/10 was the day my tumor was discovered almost a year ago. But does he listen to me, no, not much.

Today while I was running on a country road, a huge pick-up thought it would be fun to play chicken with me swerving towards me so I would have to jump into a ditch. Thanks for that.

Naomi's boyfriend changed his mind and wants her to move in with him next week. She is just so happy as she sees it as proof that he loves her but I see plenty of problems with this. He will have another roommate and possibly that roommates's girlfriend. Naomi had already arranged to move into a nicer place this winter with 2 girls, which I was OK with but Dontae surprised her last night with this bit of news. He also allegedly is saving up for a ring. She will not listen to me so the best tact is to just let her do it and see the problems for herself. I imagine she'll be back here in less than a month and then she could still go with Plan B.We had a long talk today including discussing how her life would not be changed for the better if she were to get pregnant. I am not sure I am getting through to her.

While we talked, the hummingbird flitted around oblivious to us. We did see a strange bug I never saw before. It was about 1.5 inches in diameter and consisted of black feathery petals with white tips. She thought it was a flying spider but it's 'petals' did not look like legs-very, very thin. I thought at first it was a cottonwood seed but black. All this rain has rotted several of my plants.

Aetna sux redux

I finally heard from Aetna concerning the denial of my port check x-rays amounting to about $1300. When I had radiation, they would take daily x-rays to make sure I lined up so I would be zapped in the right place. But Aetna says I am only allowed 2 per 5 day period and that I should have known that and should have questioned the operators. I shouldn't have assumed that they knew what they were doing. My physician wrote that these port checks were medically necessary but Aetna didn't address that. It just repeated that they would pay no more than 2 x-rays per week. The website I was supposed to consult has absolutely no information about radiation treatment and its requirements. Nevermind I saved these idiots money by having the 3 week treatment vs the 6-7 week program standard in the US. My letter of denial was written in such obtuse language, I could not understand it beyond the fact my appeal is denied. My former company has a plan administrator who is dealing with this now. I am not optimistic.

Aside of the terror of a possible early death and very delibitating, humilating treatments, cancerfest has the additional bonus of financial aggravations. I am lucky that I had good insurance for most of the treatment. Unfortunately, I got stuck with Aetna since mid January with its high deductables, co-pays, and now denials for standard procedures. Argh!!!

I ran in the pouring rain this morning. As long as it is warm and not windy, I really don't mind but it is hard to see with my glasses all fogged. It turned into a thunderstorm right after I finished.

Labor Day Blues

Labor Day always makes me sad-end of summer and and the beginning of homework to supervise. As my children are now all adults, the homework supervision days should have been coming to an end but Naomi needs lots of help.

Today is humid and drizzly but the last few days have been beautiful. Yesterday I went for a 25 mile bike ride with a friend who just started riding after a 35 year break. I figured rail trails should be a good beginning as the grade is never more than what a train can handle (about 3%) but there was a good size hill in between the two trails we rode. No wind though (nothing worse than riding into a head wind for miles). I used to ride quite a bit doing centuries (100 mile rides), multiday rides, some with Naomi and Josh though not together both strong riders, and doing triathlons but haven't rode for a while, in part due to the broken arm and then chemo balance problems. I did test my balance yesterday and it's back to normal. But Josh left the bike maladjusted and I didn't have time to fiddle with the brake rubbing the front tire slightly (at least the tires were pumped) so I got even a better workout. I was quite stiff today as I started my run but fortunately loosened up. I ran into 3 police cars surrounding the house of a high school friend of Shanna's. Must be a story behind that.

I have lots of morning glory vines twining all over the place but no blossoms or even buds. This is the first time that happened. I do have a stunted plant that was in the shade that has buds. I'll be sad when the frost hits killing most of my flowers. Last year that didn't happen until late October.

We went out to dinner with Josh and Julia and her sister last night. Good times.

Cortez

Finally asleep

Naomi and her little charge Cortez

So many of Naomi's friends are having babies. As much as I love grandchildren, I am really hoping for her not to join the crowd until she can earn a living. Cortez was born just a few days after her 17 year old friend graduated making him 12 weeks now. He is very cute but I wanted to show her how much work he is. To console him, she had to keep walking for an hour. She wanted to sit down but I said, Keep walking-He'll know you're sitting down. The mom came to pick him up 4 hours later-2 hours after she said she would. Lots of lessons learned.

ieri (yesterday)

I prefer the word 'domani' or even better 'dopodomani' (the day after tomorrow) as they are easier for this one to pronounce. I am still listening to my tapes to keep the Italian cadences fresh in my mind. Still I can only trill my 'r's occasionally. This is one thing that Naomi excelled at -rolling her 'r's in Spanish. Understanding the grammar, e.g. figuring out when to use soy vs estoy, not so much.

She did like her art glass earrings from the Corning Glass Museum. I served some of the rainbow cookies she requested to the moms last night as she has stopped eating treats. She looked healthy at 155 but is down to 132 which might sound alot but she is very big boned and is slightly over 5'10".

Yesterday would have been Daniel's birthday if he hadn't insisted on coming out early. Presumably the fetus secretes some substance that initiates labor. Perhaps he has tired of being in his awkward position (one leg up by his ears, the other leg down-when they pulled on one leg, the other got stuck).

I had a pleasant 3 hour lunch with a former colleague yesterday. Screw the salads, I went for the Casey Burger for the first time in a long time. If that wasn't bad enough, I had the moms over later for appetizers and drinks. Lots of little goodies though one made a healthy Caprese salad.It was a nice night out and we sat out way past dark lit up only with my solar light collection. The mosquitoes weren't too bad but during the day, the yellow jackets have become pesky before the time they usually do. I wish I could find their nests and get rid of them. I still see a hummingbird once a day-not nearly as much as one of the other moms who has several buzzing around her flowers and feeders at any one time.

Will need to run plenty today to atone.

Hair issues

Today on the TNBC boards, a woman posted that although she finished her chemo 2 months ago, all her eyelashes and eyebrows suddenly fell out really upsetting her. She had asked her onc specifically if she were done with hair loss and was told she would be. Been there! One poster said she went through the eyelash/eyebrow loss cycle 5 times now. Another took all kinds of supplements to make them come back, which they did. Mine came back with no supplements surprisingly enough. They fell out over a 2 week period at the end of April after being full all through chemo, which ended 3-10. By mid-May, they were almost completely back but this August, most of them fell out again only in a staggered fashion so I wasn't ever completely lashless and eyebrowless. As of now, I have skimpy eyebrows, all of my lower lashes and the uppers are at half-length. I hope this is the end of it. I am amazed that the poisons have such long term effects and should count my blessings that I haven't been affected more as many of my breast cancer sisters have been. Still have some residual digestive issues though.

A neighbor suddenly pulled into my driveway yesterday as I was watering my rock garden. I'm so sorry-I just heard you have breast cancer and I didn't help you at all!!! Well I was diagnosed almost a year ago but I am almost all better except for the hair, but thank-you for wanting to help. She did say that she really liked my hair.

I was going through my old papers yesterday throwing out what needed to be tossed and I came upon the Zometa study protocol consent form, which I decided to have nothing to do with. Zometa might be useful in preventing bone mets but I would need monthly infusions for THREE years. What got me though is that they have 2 different experimental assays to determine your risk for developing bone mets (n-telopeptide and parathyroid hormone related protein) which they would perform on you BUT THEY WOULD NOT TELL YOU OR YOUR DOCTOR THE RESULTS!!! Their excuse is that these assays are experimental and thus not accurate but I don't buy that one bit. They could easily give you the results with those warnings in hand though maybe if they told you that you were low risk, you'd bolt from the study.Sadly although some people with TNBC do get bone mets, they are more likely to get soft tissue mets instead-lung, liver , and brain more or less in that order. I was told that Zometa MIGHT prevent those too but that sounded really shaky to me. And the drug has side effects such as jaw bone necrosis. I know that no drug gets approved without clinical trials but there has to be more benefit to the patient.
I hate the fact that they have my tumor performing all sorts of assays on it and not sharing with me the results, some of which could possibly be helpful to me.

I did agree to the chemobrain study only if I get the results. They were actually taken back by my request. They were asking that I be in a that claustrophobic, thumping tube (fMRI) for 3 hours total (over 3 sessions) just to be nice. But they did (after some phone calls) agree to my request but since it isn't in writing, we'll see. They tested my functioning before chemo, right after chemo and will a year later to see if my functions have returned.

Went out with a good friend for Happy Hour last night. We sat outside. It actually was chilly! Where has summer gone?

Daniel update

The little sweetie is now 2 weeks old. He lost a lot of weight initially due to his prematurity but has almost gained it back and is doing well. He still has to be wakened up to eat sometimes during the day but is gradually becoming more alert. His dad is taking two weeks of paternity leave to help with Oliver.

I am loving the cool, dry air in the morning making my runs so much easier. I do miss the flatness of the seashore but here there is no concrete.

I am back to helping Naomi with her classwork. She likes her teachers and knows so many kids there. Not sure what her plans are to move out. She has been told that she needs to pay for an apartment herself meaning she needs a job. The place that has tentatively agreed to hire her still hasn't opened due to they say, problems getting utilities. Her potential roommate is not in good financial shape either. She came over 7 am yesterday needing to use our computer. Still I rather have her share a place with this girl than the boyfriend.

Next on my agenda is to plan my Italian trip next month and brush up on my Italian.

Community College

Community College (for my international friends) is usually a 2 year program after high school though Naomi will probably be there 4 years to get her degree in nursing. They accept everyone who applies but do have certain requirements to get in certain programs. Usually it is much less money per credit hour than even state-supported 4 year schools. Enrollment now is bursting at the seams due to a return of jobless, older students who need retraining and the many families that can not afford the tuition of a 4 year school. Also it is possible to switch to a 4 year school after 2 years, which ends up saving quite a bit of money. Still I had a hard time accepting that a community college was where Naomi needed to go. When I was in college, I assumed that people who went to them were too stupid to get into a good school. I was very eager to get away from home so having to go to a community college (always for commuters)would really have been sad for me. I believe one grows up so much more away from home but Naomi is not ready for that. We did send the older kids away even though Shanna went to UM in a dorm 5 miles away from us. Josh came home every weekend from his school to see his girlfriend Julia who for a while, stayed with us while he was away. Her parents had moved out of state.

With the economy so bad for everyone, the stigma isn't so strong as it once was. Today Naomi brought an ex-teammate from her travelling volleyball team home for lunch that she found at her school. On travelling teams, you really get to know the parents because you end up with them for entire weekends away from home. I knew from her mother that this girl was a top student who could get in many places but I suspect the economy has forced them to downsize expectations. The girl said that half of her graduating class is at WCC so she is not alone. The class sizes are small at WCC so the kids get some individual attention instead of the 500 person lectures at UM.

I can't believe it is September. Although time really dragged on during those bleak winter months that I got chemo, it has flew since then. On 9-10, it will be a year that I was in the land of cancer. I can't say that I have fully recovered though my oil glands, most of my energy, and some of my hair is back. At a rest stop the other day, a woman was struggling with snarls in her hair and looked at me saying that she wished she would just cut off her hair like I did. She really liked my hair style. I didn't say that it has been 14 months since my last hair cut. Instead of being blondish-white, it is more salt and pepper. It is also wavy and grows away from my head instead of lying flat (if I had let it-I used plenty of products and blowdrying so it wouldn't be flat). My lower eyelashes are long again though the uppers are only half-length. My eyebrows are gradually filling in again.

It was only 37 deg yesterday morning though the temp climbed to 75. This cool, dry weather is easy to run in, which I have been doing since I've returned. All the rain we had in my absence has not been good for my petunias, geraniums, and morning glories. My hibiscus is covered with blossoms though. The zinnias and cosmos are doing OK.

Poor Spud! Cutting his nails really upsets him. I needed a cool day to cut them so he wouldn't hyperventilate and also so he could stay outside if he bled. I need to do it more often now as he can't walk very far to wear them down.