Tuesday, March 31, 2009

Burn, baby, burn!!!!

1 done; 15 to go giving me an end date of April 21. Happy Birthday to me. I am to get my radiation treatments everyday at 9:25 am except today which was scheduled for noon. It was cutting it close to my first LiveStrong appt. Already I couldn't drive Marilyn there as I had no idea how long the treatment would take. I waited almost 30 minutes, then they took 20 minutes worth of x-rays. The actual radiation only took about 5 minutes. It was creepy getting zapped with invisible rays with the machine revolving around me. It made a buzzing noise while I actually was being zapped.
I was supposed to see the doctor but I told them, unless she shows up in the next 10 minutes, I'm outta there. She quickly showed up but was annoyed to be summoned. I said, it wouldn't happen again.
For the LiveStrong program, all we did was fill out forms and tour the Y. Aside from Marilyn, I knew another lady from the infusion room and support group who I like alot. Of the 11 of us, 7 have had breast cancer, 2 ovarian, one unspecified and one colon-all ladies. The instructors are very enthusiastic. The head lady just finished her battle with BC. Hopefully this radiation won't interfere much with the program. I did run this morning but now I feel very tired and somewhat sore. It was finally nice to meet Marilyn in person. We've been talking on the phone but haven't visited each other.
The birthday isn't going well for Naomi. She was expecting to get a license today but she didn't have a certificate that she passed a road test. It's not clear if the one road test she had to pass the driving class is enough. Apparently she had to take 2 road tests. Annoying and more money.

Happy Birthday Naomi!

Naomi at 3 months

Naomi at 14 months

Naomi at 5 years


Naomi at 10 years with Mom and Shanna. Replaced silly glasses 1 week later.



Naomi as a senior


Well still waiting for her to turn into an adult. Last night she got to a bad start by saying once she turns 18, we no longer can tell her what to do. We had a long talk on what her future responsiblities will be. What she wants most in the near term is to be able to drive. Theoretically she can turn in her learner's permit today.
Busy day today. First I have to get fried and then do LiveStrong and then 'celebrate' Ms. Naomi's birthday.

Monday, March 30, 2009

Cancer Literature

No Free Press today although I can probably get it on line. Instead, I reviewed the most recent literature on TNBC made easier by Pam, a frequent contributor on the TNBC website who had TNBC along with her daughter. She routinely posts several articles a day.

It is frustrating reading these as some contradict each other. Among today's readings:

Success in neoadjuvant treatment does not predict overall survival (http://breast-cancer-research.com/content/10/S4/S24). Neoadjuvant chemotherapy is treating tumors before surgery. This is done when the tumor is large (> 5 cm) and the patient wants to avoid a mastectomy and/or the onc wants to see how a tumor responds to a given treatment. Anyway, one can assume if the chemo given completely destroys the tumor, one assumes it's destroying any mets. This paper claims that is not so: OS (overall survival-common term) is no better than incomplete or no response. That's a downer even if it doesn't apply to me.

Another paper highlighted the importance of typing any met. Alot of time it is assumed that any new tumor (met or recurrence) is the same type as the original breast cancer. Not so and this could be a dangerous assumption. In one case a new tumor was found to be a lymphoma- treated completely differently. Lesson learned: If one ever finds another tumor, make sure pathology is performed on it.

New tumor marker that predicts success in treatment with taxol. TLE3 ( ?-forgot to write it down)If a tumor doesn't have this marker, taxanes won't help a bit. Fortunately the marker is common in TNBC and taxanes specifically help us more than other subtypes so the nerve and nail damage may be worth it. At some point, one might be spared taxanes by screening for this marker.

Another article saying that the Red Devil may be useless against HER2 neg cancers-esp ER+ ones. This of course pisses me off when I read that I might have been poisoned for no good reason but lots of conflicting articles on this subject.

An article saying that carboplatin might be better than the Red Devil against early stage TNBC. Less long term side effects too. Wish they would get their act together on this one.

Lots of papers on BRAC1and BRAC2 cancers. I had assumed that BRAC1 cancers were all TNBC but not so although more than half are. They also surmise that the ones that aren't TNBC will quickly turn into ones that are. Of those who are TNBC, the BRAC1 + are much younger than the BRAC1 or 2 neg who are younger than the BRAC2+.

I should go out and run to make up for my lazy day yesterday-as soon as it is above freezing.

Someone in blogsphere reported that her formerly brown hair is coming in pink while she is ON Taxol. Where's my hair?

Another (Renee) almost 3 months out from Taxol finally has a whole set of eyelashes and her scalp is completely covered but her fingernails still suffer. One just fell off. Her new word for us in Cancerland is "onycholysis" which is the medical term for nail damage. She still doesn't have her energy back.

And Kathy with her new perky breasts is fighting her drains (drain wars)with humor with a whole list of songs that originally had the word 'rain' in it as in "I wish it would drain."

For my pal Sharon and her very pretty blog, radiation +implants=pain and peeling skin. Ouch!!!

Tomorrow I enter the Land of Radiation. Please let it be easy! Also I start the LiveStrong program-let the healing begin. Also as of tomorrow, I no longer will be the mother of a child as Naomi will magically be turned into an 18 year old adult. Can't wait to see evidence of 'adult' behavior. When the kids were young, we'd drive into another state and I would announce "Hey kids, we're in Ohio now!!!" They'd look up and eventually remark "So what- it doesn't look any different than Michigan" I have the feeling that crossing March 31 will be like driving over the Ohio State line. Not a lot of changes.

Sunday, March 29, 2009

How many balloons can you stuff into a car?

44 in case you were wondering. My job for the bball banquet was to get balloons and help set-up for the big event- a rather easy task for a 'senior parent'. Generally I would be expected to have a greater role doing all these team parent things but that's where the cancer card comes in handy. I have written lots of checks however. Still carrying all those green and gold mylar balloons against a heavy wind and stuffing them all into the car wasn't easy. No room for any more.
So this was Naomi's last team event. Since kindergarten, she's been on numerous teams-sometimes at the same time-swim teams, softball, soccer., cross county,volleyball, and bball. Sad to see it all end. Lots of kind words-best team ever, Naomi being the best defensive post ever, so on and so on. One parent always makes elaborate highlight DVDs making each varsity player look like a star. She included some footage of Naomi and her daughter playing together on an 8th grade team. Also more fancy gifts for the four seniors. Sports have been a good outlet for Naomi. For one thing, it is one area she can excel as her learning disability makes school very difficult. But it is good for her to learn to deal with others and to take a leadership role setting up the defense. Coach Steve keeps a close eye on her too.
Today a bizarre rash appeared on one of my thighs looking like a rug burn though I haven't injured myself. It doesn't itch. Better not be some weird manifestation of cancer. I did not run today as I've had absolutely no time between shopping for the banquet, setting it up, being there for 3.5 hours then helping Naomi with her government project. She is supposed to convert 2 landmark Supreme Ct decisions into cartoon strips (out of 6 possible cases). Understanding the issues involved is tough for her but it will be more fun drawing all the panels. One of the cases involves a school athlete refusing to provide a urine sample as a condition for playing football-unreasonable search and seizure. My former employer insisted on doing this also even though the states that the company was headquartered and where the majority of the workers lived respectively outlawed the practice. It was legal in Michigan however and they could drug test as as much as 4 times a year. Probably never found anything for all the money wasted on it and all the resentment it caused. They stepped up the program once they announced they were closing our site pouring acid into an open wound
No running today either with the time constraints, pouring rain and now SNOW!!!

Last night I went out with some of the moms to a comedy show to benefit the Ypsi Fireman's Musuem. I always wondered who would go to a fireman's musuem but there I found myself. Still it was fun.

Saturday, March 28, 2009

LittleLifePreservers.com

These are just some of the homemade cards I've received from Lesa, a breast cancer survivor in MA. I put these through the scanner which doesn't show how intricate and beautiful they are-hand-embossed paper, stamps-the yellow card here has 8 distinct layers of paper. Very beautiful. She does post some of her cards on her blog. (http://lesasbreastcancer.blogspot.com/2009/03/isnt-she-sweet.html) Anyway, since I've begun treatment, I've received 5 of these amazing cards and they have brightened my mood considerably.

I am slowly improving in running and now am up to 2.5 miles. Still lots of stops but I am recovering faster. According to Susan Love, 50% of women on breast cancer chemo gain 10 lbs or more. As the lymphoma patient ranter I posted a while back said (see: http://suzannekesten2.blogspot.com/2008/11/surviving.html), chemo isn't the weight loss opportunity that everyone thinks it is. I have no idea if I gained weight as I refuse to look at the scale as I need no more additional reasons to be depressed but there seems to be more not to love. I have definitely lost muscle tone. Reading through numerous blogs it seems that the ladies who have been thin all their lives have gained the most. Alot of it is steroid induced water retention. My fingers are still bloated sausages 18 days out from my last poisoning. Aside from the health issues of this extra weight-very much associated with mets, I don't know if I can fit into any of my nice dresses for the wedding in 5 weeks. Run, run , run.

After my run yesterday, I took a walk in the nearby woods (no running in there anymore-that's where I tripped and broke my arm). The little frogs in the pond were making their little duck sounds. They aren't peepers, which sound like crickets. I have a friend who especially loves little frogs but when I took her back there later, they were silent. The temp had dropped 20 deg by then. They were silent again today as it is much colder-if that indeed is the factor that influences their behavior.

Steve and I went today to a former colleague's memorial who lost his battle recently with a glioma. He was given 3 weeks to live at diagnosis but held out almost 3 years. I hadn't seen his 20 year old son for awhile. He is the spitting image of his father. I went with some trepidation as I had visited him only once and I really feel I should have helped more. His wife  was very welcoming and I do like and admire her alot. I saw more people that I've hadn't seen since our big lay-off and all were very supportive. Several people there have gone through incredible ordeals making BC look like a walk in the park.

Friday, March 27, 2009

Funny moments in the Land of Cancer

When people like your wig better than your real hair:

Yesterday,I went to my ex-colleague Happy Hour. Of the 20 or so people there, only one knew about the cancer and she doesn't communicate with the others. Numerous people came up to me oohing and aahing about my new hair assuming I had just dyed it. Well it's plastic, but thanks.
Hmmm. Maybe I shouldn't be wishing so hard that my own hair comes back.

You were on chemo? But you look so healthy. Oh the wonders of make-up!

People mean well and I don't try to make them feel bad even when one woman who now runs clinical trials for a company that specializes in a relatively rare cancer that is especially deadly and strikes people younger than myself, told me how most of the patients aren't going to make it and it's especially sad as they are her age (as opposed to my older age). I smiled when she said that and she quickly backed up. Not that it isn't sad when older people don't make it too.

It is sad when younger people get cancer. I read the blog of Tracy, a 30 something woman who was diagnosed with TNBC while nursing her son and ultimately died of lung mets 8 years later. She initially went to support groups apparently filled with clones of myself, ladies who already had raised their babies and even had grandbabies. How could she relate to them? They already experienced a life that she might not get to live and she resented that fact and them to a certain extent. But then there would be 20 somethings that missed out on experiences she had and then teenagers who missed out on the experiences of the 20 somethings. Cancer ends up cheating some more than others. Cancer sucks!

But people there in general were supportive. One man was pretty sure it was me discussed in the AA News article about the bball's fundraiser for LiveStrong and apologized for not calling. I did have my one beer and felt fine. The economy has not been kind to some of my former colleagues. In one case, a man left Michigan to get a job in San Diego without being able to sell his house, lost that job, got another then lost that. He is the sole support of his family. He came back as he still has that unsold house but options here are slim.

Readers of this blog know I read everything about BC, TNBC in particular, I can get a hold of. Yesterday I came across an article on who survives BC. Oh this will be interesting, something I would like to know. Bottom line: it won't be those folks with the deadliest of all breast cancers-TNBC. The article throws statistics around comparing apples and oranges. Now I don't feel so bad about the Seattle P-I becoming only an internet newspapers publishing stuff like this.http://www.seattlepi.com/health/403354_redbook248735.html

Lighten up I guess. I will do the 2nd part of the 'chemobrain' study next week and look forward to the 1 hour stay in the MRI machine with its thump, thump, thump. I went to Cancer Yoga at the Wellness Community thinking I could handle now that I am drug and myalgia free. It is taught by a very nice woman from Brighton Beach (Steve's old Brooklyn neighborhood). I have several strikes against me though: no flexibility (can't blame this on chemo) no balance (this I can blame on chemo) and no body awareness. Maybe I will improve. A woman I met several months ago was there sporting about a quarter inch of hair. She has been off Taxol now 6 weeks and only 2 weeks ago did she get hair. She was told that chemo would only increase her chances of survival a few percentage points but felt she owed it to her young sons to live at any cost. She never did yoga before but was a pro with her flexibility and balance.

The director of the place, 38 weeks pregnant with twins, was still there but probably not for long.

I ran a little farther with a few less stops but it is hard, hard, hard. I would exercise anyway regardless of the cancer, as it usually makes me feel better. Exercise is linked to improved survival rates in part (this is mainly a theory) because it cuts down on insulin levels. Also avoiding foods that have high 'glycemic indices' cuts down on insulin levels-a hard one for me but something I must do. Insulin is thought to be a cancer promoter and growth factor for tumors. So much for the alleged benign nature of 'natural substances'. Of course we all know the evils of estrogen, bioindentical, from one's own ovaries, or otherwise. Still the role of estrogen is unclear in TNBC. I am avoiding it anyway.

Thursday, March 26, 2009

One size fits most

One irritating aspect of the whole breast cancer experience is that it is assumed that all tumors are equal, except for size, grade and hormone receptors, and are treated as such when in truth they aren't. A recent publication shows there is hope for predicting which of our tumors will turn deadly (http://www.eurekalert.org/pub_releases/2009-03/aeco-ntc031909.php) Now it is assumed that if your tumor is high grade, esp. if it's TNBC, it is much more likely to metastasize so you need heavy duty chemo when 40-50% of the time it really won't. Conversely it is assumed that your low grade, ER+ tumor probably won't so you are spared the chemo but sometimes it spreads anyway. In this paper they show 3 factors that need to be present in order for the cancer to turn deadly and they seem independent of tumor size, grade and hormone receptors. They are working on a blood test now to sort this all out. Hope is on the way.

Some of my puffiness e.g. water retention is disappearing. Still I look pretty much like the Michelin Woman-pale, puffy and bald. Each day I check myself for signs of stubble but no-nothing. I did run yesterday-if one could possibly characterize that slow, spastic motion as such. I promised myself I would just have to do half of a mile-ha! I lied and went almost 2 miles (lots of stops). Still I felt better when it was done and I hope it will be easier each day.

Another fun aspect of cancer is dealing with insurance companies and billing agents. Alot of my case is complicated by having 3 different insurance plans while in treatment. We tell them the dates of effective service repeatedly and repeatedly, these are ignored. Also secondary providers like to take their sweet time in billing so we get bills 5 months later. In my mother's case, I received bills up to 18 months after the treatment. In my dad's case, any bill I got more than 4 months after he died, I took particular pleasure in writing them, As you should know, he died while under your questionable care and probate is now closed, so you are SOL, or words to that effect. They had already been paid by Medicare and his insurance so they wouldn't be starving.

Tonight there is a Happy Hour for my ex-colleagues still in the area. Most of these folks don't know my sad story. I did go back in Oct. and didn't say anything. I can drink now. I had a huge gin and tonic in Seattle compliments of my BIL Steve that tasted pretty good. I am cutting back on wine, which I've lost my taste for. Alcohol has been shown to be a big risk factor in BC in general, not so much for TNBC. It seems to cause estrogen blood levels to spike, particularly those who are on HR as it interferes with the liver's metabolism of estrogens. Even though I have (had-hopefully) TNBC, I still am at risk for the estrogen kind and I don't want to tempt fate any more.

Wednesday, March 25, 2009

Good Wishes Program

Maddy (Steve's sister) with Shanna and Oliver.

Four generations: Great-grandma Terry age 84, Grandpa Steve, Mom Shanna (15 weeks pregnant) and Oliver-almost 14 months.



Outside of Seattle in North Bend (close to where they filmed Twin Peaks) is a small accessory company that makes and then sends free beautiful head scarves to cancer patients. I found out about the program on the TNBC website though I think my blog pal Renee (also from around Seattle) had mentionned it. For those who need it see http://www.franceluxe.com/ for their "Good Wishes" program on the bottom of the page. When I returned from Seattle Monday, a package with a beautiful Kenyan print silk head scarf with a matching bandeau was enclosed along with a card signed by everyone in their little company was waiting for me. This was quite the day brightener. Love those people in Washington State!!! As my hair has yet to appear despite the lack of poisons in my system, this comfy scarf will get plenty o'use.


Sad news: Along with the Seattle P-I (the good newspaper that I like to read in Seattle) that ceased to print right before I got there and the Detroit Free Press only publishing 3 days a week, it was announced yesterday that after 175 years, there will be no more Ann Arbor News. Very sad. Both of these papers had become unbelievably thin-less stories due to cut-backs in reporting and lack of advertisers. I could live with the lack of advertisers but apparently the paper can't.


I haven't yet resumed my running program though I did my hour, fast as I can, walk. Maybe today.


Tuesday, March 24, 2009

The Radiation Simulation

For 45 minutes I had to lie absolutely still while being measured, CT'd, x-rayed, having tubes and stickers affixed, etc in an ice cold room. By the time it was over, my arm had gone to sleep. Then I was tatooed. For some reason I thought the breast itself was tatooed. Wrong. I have 3 little dots-one in the middle of my breast bone and one on each side at the base of my ribs. I had to watch a video (a one size fits all kind) and then sign off on the fact that I realize that I am undergoing a treatment that is NOT recommended. (Dr. Pierce really wanted me to go for the standard 6 week treatment though she acknowledges my survival will be the same but the 'cosmesis' will not be. Cosmesis is not much of a concern to me given how bad the breast looks already).

I start next Tuesday and the the latest I will be done is April 20-the day before my birthday, which will be the best present ever to be done with this. The schedule has me finishing on 4-17 but I believe that is a mistake.

I have posted some pix into my blogs of the past week of family members but am not finished yet.

We stopped off at Silvio's afterwards for a treat (The Abruzziese restaurant-Nancy if you are on this-you have to go there again with me) where I ran into an old friend Carolyn who was indirectly responsible for introducing Shanna to Ramy. She went from being a researcher to a pilates instructor .

The house was largely in one piece when we returned though no water for poor Spud. Have to help with the bball banquet, which should be fun. Naomi seems to be caught up in homework but still has to raise her grade in math. On 3-31, when I begin radiation and my LiveStrong class, she turns 18 and she thinks the seas will part as she is magically transformed into an adult.

Monday, March 23, 2009

Last day in chemoland

Sixteen weeks is up!!!! Tomorrow I hope to awake to a full head of hair, full sets of eyelashes, smooth, moisturized skin, pink nail beds, good muscle tone, full of energy capable of running 5 miles without stopping-all those things I had 16 weeks ago. I really hope those rogue cancer cells are dead if indeed any of them had escaped from the mother tumor. In Susan Love's Breast Book, she says that the main tumor itself sends out signals inhibiting the mets from growing but once it's out, look out-any rogue cells are free to grow. I really hate reading stuff like that.

Next stage in the Slash! Poison! and Burn! triathlon of treatment is the final one: Burn! To that end I have my radiation simulation tomorrow and hope to start my 3 week "Canadian protocol" next week sometime. By the end of April, I hope to have this whole unpleasant mess behind me.

I am back in Michigan now. I wish I could have stayed in Seattle longer but I had that appt tomorrow and Josh was tired of dealing with Naomi. Shanna leaves there tonight on the red-eye. Hopefully Oliver will sleep or it will be a long, long trip. She is feeling her other baby more now. The grass here is still brown unlike the green of Seattle and no azaelas, flowering cherries, red buds, etc to been seen here. Yesterday we took the ferry to Bainbridge Island and walked around in the cuetsy village of Winslow. Josh, Steve and Maddy ran a race there many years ago. I passed because I thought I ws pregnant. Later we visited Oliver's great-grandma Terry. This time he warmed up more to her. It was good to get away and see family, mountains, the ocean, the flowers-etc. Lots of fun.

Sunday, March 22, 2009

family time


Grandma getting dizzy with Oliver

It is nice to be able to finally see the mountains-Olympics to the west and Cascades to the East. Still too many clouds to see Mt. Ranier. I finally was able to have 'genuine' Naples pizza which I couldn't have in Naples as I was continually misled about our schedule. I hadn't learned my lesson yet on Italian time (if you told you are going to be picked up in 5 minutes, be prepared for a 2 hour wait). To be genuine Neapolitan, the ingredients must all come from around Naples, which they certify they are at "Tutta Bella". The boys came in for a one day visit. The younger one, David-almost 16-put his entertaining skills to work with Oliver. Dan (18) only unleashes his wild self on stage (both boys are in different rock bands) and is very quiet off of it.We did touristy things-trip to the Seattle center where the "pace Point" is (Josh's 4 year old self's name for it)and rides. I took Oliver on the merry-go-round which he enjoyed. Joe took him on the "Dumbo" ride. There were gardens and a huge fountain that randomly sprayed water in all directions. Kids were running through it though the temp topped off at 52. Steve (Maddy's husbands-too many Steves) grilled salmon for a big family dinner that Great-Grandma Terry joined us for. Oliver is still frightened of her.




I had a restless night full of disturbing dreams. In one of them, a good friend decided it was too much work to be my friend anymore and said she wouldn't. There was no reasoning with her and I didn't even have cancer.

Saturday, March 21, 2009

Showers and sun in Seattle

The weather changes so quickly here. We were walking Oliver along the beach in Golden Park and suddenly torrential rains began. We were fortunately close to a coffee hut where Steve, Oliver and I waited out the storm watching Maddy get soaked as she raced to get the car. Oliver thought it all very funny. It was sunny without a cloud in the sky by the time we got home,

Earlier in the day, we went to the International district for dim sum. Joe, my 13 year old nephew, was thrilled and out of school for the day. I must have ate too much because I felt very ill the rest of the day with sharp stomach pains. After a very rough night, I feel OK. We are taking a ferry ride today to Bainbridge Island and then we are to have a big salmon dinner tonight.

Oliver isn't letting Shanna have any sleep. Hopefully the new baby will be a sleeper. In September, I plan to walk Oliver all day to siphon off that energy. He is a busy, busy little boy.

It's almost the official end of chemoland but its effects will still be around. Absolutely no sign of hair regrowth and for added insult, each day my eyebrows and lashes get thinner. Two weeks ago they were normal. Now 8 of my nails look like I have coffee stains on them. The nails grow very fast, which I don't understand why as fast growing cells are preferentially killed, but it's not a healthy growth as there are white streaks and yellow and brown patches and there seem to be air spaces. I haven't washed dishes since chemo began  as I have no oil glands. A bonus: taxol has killed my funky apocrine gland damaged in surgery so I don't smell so bad or maybe my perception is off and I still stink but just don't realize it.  I do smell sweat on other people and it grosses me out. At one point I had wondered if I had cancer of the apocrine gland itself as basically sweat glands and breasts derive from the same embryonic cells but if I did, Taxol seems to have killed it.

Friday, March 20, 2009

Reprieve from Cancerland

It is nice not having to deal with some aspect of cancer every minute. True looking in the mirror brings me right back as even more lashes are falling out and the nose bleeds have resumed. It is nice to watch Oliver busily toddling all over the place with a large, loving audience. He is so very precious.
We had a break in the weather as we went to Pike's Market and saw all the fresh fruit, flowers and fish. Lunched on nice, doughy humbows and French pastry. Earlier we took Oliver to his Great-grandmother Terry for a first visit. She enjoyed it much more than he did. She later came over for a big family dinner, which will be even bigger when my nephew Joe's older brothers join us this weekend. When I last saw Joe at Shanna's wedding, he had a very high pitched voice but at 13, he has been hit hard with hormones. He is a tireless Oliver entertainer, so sweet to watch.

Thursday, March 19, 2009

primroses


I love that I can see real flowers again that aren't snow drops and crocuses. Seattle yards are full of blooming multi-colored primroses, including Maddy's yard, a variety I never have seen in Michigan. Her pinks are in bloom too. Also abundant, azaelas and rhododendrons and various vetches and sedums I am unfamiliar with.


Travelling with a one year old cross country is not easy. Shanna took a nearly empty flight to Detroit from Boston to join us on our flight. I hate Northworst and their new policies. I tried to avoid paying a luggage fee by stuffing everything into a small carry-on. When boarding, instead of saying those with small children can board first (us!!), they said those with absolutely no carry-ons can board first followed by those who had things that could go under the seat. Only then, those pariahs with 'rolling bags' would be permitted to board. We sat together passing Oliver between us. He was very good considering the 5 hour flight and lack of room to explore. A man with a waist-long braid sat in front of us and it took all three of us to stop Oliver from yanking on it. So he now has 4 teeth and can walk with bent arms up in the air as counterbalances. Apparently he ate too much on the plane because the second we got to Maddy's house, he threw up twice in extremely impressive amounts. Poor little sweetie still doesn't feel well and has a slight temp.

Maddy had to work this morning so Steve and I went out to eat about .75 mile away bringing Shanna back food as we didn't want Oliver out in the drizzle. It was nice to look at the flowers along the way.

Up today is a trip for Oliver to meet his great-grandmother and then a trip to Pike"s Market. Yesterday I was way too tired to enjoy much.

Wednesday, March 18, 2009

Outta here

It occurred to me that Steve never called his sister to tell her we are coming and that she knows of it only from reading this blog and Shanna's Facebook. Argh! But I guess by now, she is used to such dysfunction. She did send a weather report-rain for the entire time we are there and mainly temps in the 40s. Yesterday it was 70 deg here and sunny. I did my long walk but was sad to see that I've slowed down over the last cycle.

I got some advertisment in the mail from K-mart saying as one of their best customers, they are pleased to offer me $25 if I switch all my precriptions to them. If I am one of their best customers, they have big problems as I haven't even been in their stores for years preferring Target. Then I thought, maybe my identity stealer is their best customer and I just haven't gotten the bill for it. She using my driver's license (which always is in my possession) openned up a Sear's acct last fall and bought a leaf blower and sent the bill to me. I am to be told anytime 'I' open up an acct somewhere by the credit bureau. I assumed she must be a bank employee who has a copy of my driver's license and all my other ID. She of course, is welcome to have my cancer. But then again, maybe K-mart has gotten wind of what a big time drug consumer I've been lately. My drug bill must approach $100K by now.

Josh's birthday being on St. Pat's has always been a problem for going downtown to eat and finding parking. So we went on the outskirts of town. He had been sitting in the bar for an hour wearing green. So sad sitting all alone on your birthday, so he made friends until Julia, Steve and I showed up. I do have an Irish great-grandfather immigrating here from Dublin giving me my bizarre middle name. While all my friends had cutesy middle names like Ann or Sue, I had "Graham". It could be worse. They could have given me my mom's maiden name, a homonym (or is it a homophone) for a female sex part. They showed us their Jamaican pix. Josh will have his hands full with Naomi.

Tuesday, March 17, 2009

Happy Birthday Josh!

Josh about 6 months old. He was my baldest and biggest (10+ lbs) baby.



Josh as a 6 year old


Josh 11 with his sisters: Naomi 2 and Shanna 14.


Today is Josh's 27th birthday. It is hard to believe that this giggly baby, so quick to walk but so slow to talk, has morphed into a responsible, handsome man with a wife, a good job and a house. He was a very active baby getting himself in all sorts of trouble with his love of climbing. He hated to be alone and was climbing out of his crib when he was one demanding attention in the middle of the night.

He was very athletic-always the best one on any bball, baseball or soccer team. He concentrated on soccer and his travel team travelled all over the place for 8 years being the State cup runners-up one year. He was a joy to watch-so handsome and skilled. He has always been a charmer, quick to smile and very skilled at smoothing over bad situations. Everyone is his friend. Trying to limit his friend list for the wedding was a major challenge. School also was a challenge as he is dyslexic and had great difficulties reading. He didn't read a book until his senior year. I would have to read everything assigned to him, tell him what was important, and quiz him. This kept me busy. Fortunately he was a quick study: there were never any doubts about his intelligence. Now he reads several books a month for pleasure despite limited time.

We have always been especially close and I treasure this beyond anything else. We will take him out tonight and he will have Naomi duty until we return from Seattle.
I am having trouble with the internet today and wonder if I will ever get this published. Very annoying as half of my post was erased.
It will be close to 70 today. It will be much cooler in Seattle but I am so excited to see Shanna, Oliver, Maddy (my sister-in-law) and her family that I don't care. I do love Seattle and look forward to walking along Green Lake (near Maddy's house) and going to Pike's Market, seeing the water and mountains, and eating salmon. Lots of little things to do to get ready.

Monday, March 16, 2009

Welcome to Cancerland

The title of my blog is the same as of an essay of a writer who has a very cynical take of the pink, cheery aura surrounding breast cancer patients. See http://www.barbaraehrenreich.com/cancerland.htm . She takes on many of the myths of breast cancer, including its detection, the differences in attitudes between cancer 'martyrs' and 'cancer survivors' (none), corporate sponsorship (exploitive or helpful), pink ribbons, the infantilization of the patient, the ignoring of the environmental causes of BC, etc. Suffice it to say, she won't go cheerfully into that good night with a pink teddy bear tucked under her arm. Aside from the annoyance of facing your mortality at a much earlier age than you thought you would have to and the many discomforts of the treatments that might not even be helpful, she is annoyed at the approved cheerful mindset that everyone, including other BC patients, expects of you. For fun, she would post her negative (true) feelings about her situation on various support boards and for the most part, would be criticized for her bad attitude and warned of certain doom for entertaining such bad thoughts. Anyway, she's a good writer and takes an interesting, philosophical approach to life in cancerland.

It was sunny and spring-like again yesterday, which improves my mood. I took a couple walks with Sunny, who left past midnight with her owners, and cleaned up my patio a bit. Many people out and about. Aside from sore feet, my myalgia seems to be gone and I took no meds at all for it yesterday. Still my nails seem like they might fall off and my fingers are stiff and very swollen. I can finally blow my nose without losing a teaspoon of blood. I was very surprised that my hemocrit improved with all my bloody noses.

We leave for Seattle in two days. I can't wait. It's been too long that I've been stuck here while everyone else is out having fun.

Sunday, March 15, 2009

Taxol damage

Although in general I feel better on Taxol than on Adriamycin, it is still taking its depressing toll with the 3-4 day period of myalgia (finally fading-thank-God) and numbness. My once beautiful nails have 2-3 sets of Mees' lines and half of them look like I have spilled coffee on them with the yellow-brown patches. The nail beds are numb and I am afraid they just might fall off at some point. I was trying to make myself look presentable for my big night out last night and noticed that at least half of my eyelashes are gone along with my eyebrows. I wanted to cry what did I deserve to have this all happen and still there is a chance that it will all be in vain. And where is my hair? Some people's hair grows back on Taxol but apparently not mine.

There have been some papers in the last few years, some published by my onc's partner, saying that Taxol is ineffective for estrogen positive, her2 neg ladies in preventing mets (the most common tumor type) However they still recommend it because if they are wrong, women could die. On the other hand, lots of ladies could be needlessly exposed to toxicities and permanent neuropathies. For estrogen negative ladies (me)there is supposed to be some benefit but I've yet to see it quantitized. Basically, there is just this narrow window of time that one has to stop mets. There will little to slow them down once they have a toe-hold.

"This is the first such observation that’s been made, and it was made retrospectively, meaning we looked backwards instead of forwards. We are not recommending at this time that women with positive lymph nodes, for whom we would currently recommend Taxol, but who are estrogen receptor positive and HER-2 negative not take the Taxol. We think the stakes are too high,” Hayes says.

One thing I still don't understand in the treatment of estrogen positive cancers is why the very last step seems to be cutting off the estrogen source. If I were queen, that would be the first thing I'd do is stop feeding those tumors. For my new friend the other day, they've had her go through 2 surgeries, 6 months of chemo, a bunch of radiation, and maybe now-almost a year later-they are going to deal with the fact that her ovaries are still producing boatloads of estrogen (which scares the life out of her). She will be on the Zometa study that I passed on (we have the same onc) but I was surprised that my onc didn't share with her how Zometa cuts down on mets in cases identical to hers. She was very happy to hear it.

It was a warm, sunny, almost spring day. Letting Sunny run around the tennis courts was out of the question as they were occupied. I did throw the ball from the top of the sledding hill until kids started to play on the nearby playground. A loose German Shepherd strikes fear in many people. Even one on the end of the leash causes many people to cross the street when they see us coming. Finally on a cul-de-sac about .7 miles from home, I encountered a group of neighbors with 4 lab mixes throwing balls around with ball flinging devices. I asked if Sunny could join the pack promising she was very well behaved with other dogs. So she had a good time out-running the lab mixes and the owners were very impressed on how well she responds to verbal commands. They said we could come over anytime as maybe Sunny's smartness might rub off on their dogs. But I am just a parttime big dog owner and can't join their little group.

I used to have a husky Bandit that was a pain to walk as he insisted on marking every tree. Spud loved to sniff every tree. Sunny's main interest in our walks is squirrels. Her eyes are constantly scanning the surroundings for them. I keep her out of the woods as she will jerk my arm every 2 seconds when she spots a squirrel. Every fifth house or so, she will spot one and go into stalking mode. We have a few obese squirrels on our property who don't give her the proper respect. Today will be our last day with Sunny as Josh and Julia come back very late tonight.

We had the Mom's group last night. I usually make dessert but lately due to lack of energy, I've just bought one holding my cancer card. I decided that for once I should make something nice using the raspberries from my patch that Steve picked while I was away in Italy. I made a raspberry, orange custard tart that tasted good (Naomi especially liked it) but it fell apart as I was trying to serve it as the crust was so delicate, which almost set me into another crying jag. I spent alot of time on it and now it was looking like a pile of red mush. We always have lots of wine but I have to pass on that given the beating Taxol and Vicodin does to my liver. I did have a small taste of my friend's cream rum liquor from her Jamaican trip. Another mom just returned from a rural village in Kenya where her church group were educating high school students so she had lots of interesting stories and pictures. She also went on a safari staying in a deluxe lodge.and saw lots of animals. Monkeys were constantly stealing her food. She enjoyed teaching the kids the most as they were very enthusiastic and thankful for anything they had. They were thrilled about Obama esp given his Kenyan connection. Someone had brought Obama pins for them, which they all wore proudly. One of them had asked a church lady whether she knew Obama and she replied no as she had never met him. The student then patiently told the church lady Obama's whole history and how he was elected to be president of the US. Good to know. As this is a 'moms' group formed shortly after our about to be thirty (!!!) babies were born, our kids are a focus. Kids moving to be closer to us and kids moving away from us as the economic conditions are so poor. I thought I was coming down with a throat infection while there and I couldn't get warm plus my legs ached so I had a hard time being cheerful. Despite taking drugs, when I returned home, I just could not get to sleep until 3 am or so. My mind would just not shut down.

Nice, semi-warm day today and my myalgia is almost gone. Wednesday we go to Seattle with Shanna and Oliver. I can't wait: my first trip out of cancerland. I've been snuck here so, so long.

Saturday, March 14, 2009

mammograms

Yesterday on the TNBC boards there was alot of discussion about mammograms. Numerous stories about how the mammogram didn't show someone's tumor that they were able to feel. Also some fear mongering site was referenced that claimed squishing the tumor causes it to spread and that the radiation itself causes up to 20% of BC. No evidence for that at all.

My mammogram probably saved my life. I say probably because still this nasty, evil tumor could kill me. Maybe in 3 years I can know for sure. I should have had my annual mammogram in May but I didn't want anything to stop me from going to Italy. My tumor seemed so fast growing, perhaps they would not have seen it in May 2008. By May 2009, it would have been huge and spread but maybe I would have felt it by then. I guess I'm lucky that I went in when I did-large enough to detect but probably not advanced enough to have spread. I had 'clean' nodes but 50% of the time tumors can spread in the bloodstream. I just have to hope that the chemo killed them. Yesterday at the support group, the one woman went through the same chemo as I but afterwards they found a tumor in her opposite breast and nodes. Scary. She had a different kind of tumor but still the chemo should have killed it.

The bottom line, mammograms aren't perfect especially for the under 40 ladies but it is very important to get them.

Hopefully the worst of the myalgia is over though I still feel it. It was sunny out yesterday and I took Sunny out for a while to play trying to ignore my sore legs. It's the Moms group tonight though one of the moms is away dealing with her father's estate. No picnic there. If stress really causes cancer, dealing with my parents' estates and lawsuits over the past few years did me in. I had to go to court 5 times in the year after my dad died both as a plaintiff and a defendent. Fortunately all of that is over but for a while, it occupied all of my free time and caused much anxiety.

Friday, March 13, 2009

Cards of support

Yesterday I received a very nice note from my cousin D and today yet another beautiful card from Lesa in MA who makes these hand-made cards for cancer patients. At some point I will scan the latest one, the prettiest one yet.

Also I had separate visits from two friends with nice treats from both. I had nice juicy raspberries for breakfast.

So these are my 3 hard days of the Taxol cycle with the myalgia. Such a strange phenomenon! Every muscle fiber in my thighs feels swollen and sore. At night, I take Neurotin and Vicodin, which makes me sleep. I try to tough it out during the day. I was able to get an hour of exercise yesterday with my pal Sunny before the pain kicked in. I throw a tennis ball around in the tennis court. I really have a bad arm. (Naomi has an unbelievably strong arm-she threw better than I when she was 6) At best, I throw it over the nets so Sunny has to run further to get it or I stand on top of the sledding hill so at least it might roll a long distance and it tires her out to go up and down the hill. Naomi doesn't want her in her room any more so she was with us. She constantly monitors us to be sure we are asleep so I have to lie very still or she thinks we are fair game to get up and take her out.

I went to the monthly breast cancer support group at the Wellness Community. The 3 others were completely new, one being the woman who was my chemomate the other day during my last Taxol. She has gone through alot even though she is estrogen positive (a triple positive). Plus she has a very young son and went through a divorce during chemo. She had cancer on both sides-ironically a very small tumor (4 mm) on one side, which was her-,was the one that spread to her nodes. The nodes were clean on the larger tumor, her+ side. (her+ tumors generally are more aggressive though fortunately treatable). One lady there was finished with everything and just wanted to spread the word about LiveStrong, which I start in April with M. The other lady has a very small ER+ tumor. After radiation, she's done-no chemo.

So Kathy in Chicago is getting new breasts today! Hope the surgery is going well.

Thursday, March 12, 2009

Positives about negatives

The following is a site of a former journalism professor who has survived triple negative breast cancer and has compiled lots of articles that are helpful for possibly surviving this disease.(http://hormonenegative.blogspot.com/2009/02/surviving-triple-negative-breast-cancer.html) Included are articles on nutrition's role in survival. Some interesting facts gleaned from her site: the percentage of hormone positive tumors has increased quite a bit in the last 20 years from 64% to 72%. Could be due to obesity (linked to estrogen positive tumors and HRT use-also linked to estrogen positive tumors). You would think men's breast cancer (1% of BC patients are men) would be estrogen negative but 90% of their tumors are estrogen positive. Strange.

I did go to the UM support group last night but there was only one other patient. I think that guided imagery speaker last month scared everyone else away. The social worker always leads the group and Dr. Henry's nurse-practioner was there to answer medical questions. She's my neighbor. The new participant was about my age and had 3 estrogen positive tumors, not all in the same breast. Each tumor was individually tested and one of them, through that Oncotype program was found to be super aggressive so chemo was recommended-my regimen. I was surprised by that as I read that Taxol wasn't all that useful for estrogen positive ladies. She finished her chemo at the end of December and now, 13 weeks later has a quarter inch of peach fuzz for hair. I do hope mine grows faster than that!!! She didn't lose her eyebrows or eyelashes until her last Taxol. Damn. Hope I get to keep mine though Anne, the nurse present, thinks I have a good chance of keeping them. Her eyebrows have already grown back and her eyelashes are starting to reappear. As her tumors were all estrogen dependent, she's on an aromatase inhibitor to block any estrogen her body produces. She has lots of side effects from that drug so I guess I should be grateful that I don't need to be on one.

One of the goals of the support group is to provide feedback for the cancer treatment program in general. I expressed my concern about having poorly trained techs administering the Neulasta. In the patient education program, we are taught that the fatty areas of the belly or thigh are the best places for the injection but the techs are trained only to do it in the arm-the most painful site. The other patient said she wanted her injection in her thigh and they said that if so, she would have to wait a long time for a nurse to do it instead. Also, when I finished chemo the other day, I was given a flyer for a recovery program that occurred 3 weeks ago. That wasn't much help.

I did call Marilyn (the triple negative in my neighborhood) yesterday to see if she wanted to go to the support group. She did have her last Taxol as scheduled and finally is recovering but felt that she needed her energy to work on stuff she's neglected for the past 16 weeks. She is in my LiveStrong program so we'll do that together.

Sunny is finally settling in and has started to eat. We have to keep her food separate from Spud's. She won't touch his food but she's very possessive of her food even if she isn't eating it and will snap at him if he even sniffs it. I walked her for 45 minutes and had her chase a tennis ball in the tennis courts (no mud there) until she started to slow down. She likes to drop the ball 10 feet away from me but I won't pick it up unless it's at my feet. I keep saying 'closer' and she'll push it closer in one foot increments. Either that is part of the game or she hasn't caught on that I want it at my feet on the first try. My neighbor Elaine remarked how obedient and mellow she was for a shepherd but I said only because I was finally able to exhaust her. My myalgia hasn't started yet though it probably will sometime today. I will try to take a long walk with Sunny before it hits. She lies at my feet now as I type this and follows me from room to room if I get up. Spud is limited to one floor as he can't do stairs.

Wednesday, March 11, 2009

Feel Good About Doing Your Taxes

No more basketball

Some of the Rats, including Naomi, at the end of the fateful game compliments of the AA News.

The Rats played in their Regional semi-finals in Lansing's "Earvin 'Magic' Johnson" gym. No magic rubbed off on them. He was the late 70s star recruited by MSU leading them to a NCAA championship going into the NBA early only to leave a few years later with the announcement he had AIDS during the time in which no medications existed to slow it down. It was predicted he would be dead in a year but more than 20 years later, he thrives. He must have some rare, indolent type.

They played sloppily. Still they were ahead in the 4th quarter only to have Niles tie it up in the end so they went into OT where no one could score. They fouled a Niles player who made the only bucket needed to win the game. Numerous turn-overs against a team they should have beaten but their run would have surely ended Thursday in the regional final against a team a favorite to win the state championship next week. Naomi played OK.

Naomi's teammate who had a MRI to investigate a back injury leading to a discovery of a softball size ovarian tumor recovered from her surgery last week to be at the game. The tumor was benign.

Yesterday marked my 6 month anniversary of being in Cancerland. The clock started ticking at 9-10-08 when I was alerted to the presence of the tumor. There is a relatively high rate of recurrence (either in the breast or mets) for the first 3 years then it drops off sharply. At 5 years, the recurrence rate is less than that of the estrogen positive ladies. I will be monitored every 3-4 months either by my onc, the rad onc or the surgeon for 3 years. They will do no scans to see if it has metathesized anywhere unless I have symptoms. Dr. Henry claims these scans do more harm than good and never do they extend one's life. If a met is found, treatment could be started only to extend one's life but hardly ever curing it. So I wait for symptoms. Fortunately bone cancer rarely strikes below the elbows or knees-frequent sites of pain especially for runners. Some patients go crazy wondering if any headache is a sign of brain mets, bone ache, sign of bone mets, etc. I will try to be different so I can live somewhat happily keeping way, way back in my mind that I'm in the shadow of death. Odds are in my favor but not as much as I would like.

I nixed the Zometa study but Dr. Henry didn't pressure me. I do like her alot. She's a very sweet, intelligent, natural beauty. No make-up and sometimes doesn't find time to even to run a comb through her hair. She showed up yesterday with several rat's nests in her hair.

A funny thing happened yesterday in the infusion room. I was flipping the channels and I found the beginning of the "Cold Case Files" in which the case that Steve was on the jury for was featured. My chemomate who shares my TV watched as she knew about the case as anyone would who lived in MI during the late 60s. Steve was sitting right under the TV and at several points, his face would be on TV too. She did a double take. Yep that's me, he said.

We acquired Sunny in the middle of the night. Every time one of us stirs, she wakes up hoping we'd get up and take her home. She whines when this doesn't happen and eventually goes to sleep. For most of the time I've been typing this, she sits at my feet with her toy in her mouth looking hopeful that I will throw it. Can't wait to deal with her and myalgia at the same time which should hit me hard tomorrow.

So my walks will include her, a 3 year old German Shepherd. She is the anti-Spud dog. Spud is my elderly, deaf pug who lives to eat and can barely move due to arthritis. Sunny's ears are constantly scanning her world for info that might be useful to her. Our house will be safe from invaders on her watch. She is currently boycotting her food as it isn't being served in her house. Nor can she be bribed with treats. She lives to play catch. Spud even when young never got into it. Tug of war was his game and sniff every tree in the park. The park is too far for him now. He can walk a house or two away from ours.

Tonight is the UM support group. I will see if Marilyn can finally leave the house and come with me. She was supposed to have her last Taxol 4 days after my 3rd Taxol but her blood counts were too low. I don't know how she's doing as chemo really wipes her out and I wait for her to call me. As much of a pain I find chemo, I have been much less affected by it than most. I should consider myself 'lucky' but I am still bemoaning the fact that 'lucky' would be not having to deal with this in the first place. But the new 'lucky', on 9-10-11 finding myself with no mets and trying to concentrate on living fully until and after then.

Tuesday, March 10, 2009

No more chemo!!

I am so happy that this chapter in my life is over. Extra bonus: they took me early and got me started as soon as possible. I am still anemic but less so. My white cells started to come back but still are low. I am not going to take Neulasta. I said I will be on a plane in 8 days. She said on the plane, I am at increased risk for viruses but Neulasta doesn't help against them, just bacteria so I need to Purell myself next week during the 'nadir'.

No bells to ring at UM. They printed out a cute certificate of completion. I am very tired as I got up at 3:30 am to take my pre-infusion meds.

Yesterday as I was feeling good, we went out to WCC for lunch and I had a rich dessert-chocolate raspberry creme brulee though it lacked the 'brulee' part. I was able to run just a little bit-still very hard. Maybe if I had enough red blood cells... I then went to Happy Hour with Brenda-a nice time.

No school today for freshmen and seniors as the other 2 classes have state mandated testing. So many holidays! Naomi and I watched our junk TV together. The regional bball game is tonight in Lansing. Who knows who'd win?

Monday, March 9, 2009

Hair cut-before and after

Right before Oliver's first haircut

After
Recently my 13 month old grandson Oliver was accused of being a girl so off with his curls.
Only 9 days left before I see him and his mother as we travel together to Seattle! Only one more chemo to go (tomorrow)! Only 6 more months until Oliver's sibling is born! Tick-tock.
Yesterday I went with Nancy, my Gagliano roommate, and her friend Shar to see Gomorrah at the Detroit Inst of Art. It was quite crowded there as it was the first day of the Rockwell exhibit, which we had no time to see. Cultural Insts in Michigan are especially hurting as can be imagined so it was good to see at least some people still are around to support them. Before the film, our cinema teacher Elena gave an excellent talk. She is a very impressive lady having so much knowledge about various aspects of culture I had little experience with. Last summer I enrolled in Wayne State with my retraining allowance from my former employer in a summer abroad program in Italy. We had to sign up for 3 courses. I wanted to learn the language, which I did but I also signed up for a graduate level cinematography course taught by Elena Past, which initially seemed way over my head. (My third class was independent study: I submitted my blog on various aspects of Italian culture which can be accessed under my blogs). The director of the Italian program, Dr. Rafaele deBenedictus, gave us background info on the Camorra, the Mafia of the Campania region (which includes Naples). He grew up in the region and is considered an expert along with being a Dante Scholar. The movie itself was very hard to watch due to its graphic violence. It concentrated on 5 interlocking stories of how invasive the evil of the Camorra is. The characters were just replaceable cogs in a giant, evil machine that there was no escape from. The most heart-breaking story was of a young boy who ends up in a rival clan to that of his best friend and he ends up having to betray this friend's mother. Naples is depicted as a very ugly place.
Aside from Rafaele and Elena, our Italian teachers Jim and Piero were there along with students Holly and Alex. Jim snuck out before we could talk to him.
Lots of flooded streets in Detroit due to the 2 days of non-stop rain. Nancy had to drive the wrong way down a one way street to avoid us being swept away in one particular, nasty section.
Later, we had family dinner at Josh and Julia's for Julia's belated birthday. Very nice.

Sunday, March 8, 2009

Happy Birthday Julia!

Sunny as superdog with Julia
Actually yesterday was her birthday. My dyslexic son has always been confused about the date thinking that she is either 10 days older, so the bday is the 7th or is that she is 7 days older so the date is the 10th. Julia was my son's high school sweetheart and now his wife. She and her friend operate a dog 'pawtisserie' in Dexter (http://www.polkadotpupp.com/). For their joint birthdays, they are treating themselves with a trip to Jamaica this week and we will be dog sitting the ever energetic Sunny, a German Shepherd. We will have dinner with them later today.
I attempted to run yesterday in between the showers. I thought that all my walking would have helped my fitness but running turned out to be very hard. I went for about 2 miles with plenty of stops. Later I went to a friend's dodging thunderbolts for some relaxation-a nice evening. I haven't driven anywhere since my stay in chemoland. I usually feel OK in the week before my infusion dreading the day that will cause pain, but Tuesday will be my LAST chemo.
Today I will meet up with la mia amica di Gagliano Nancy to go to the Detroit Inst of Arts where we will see "Gomorrah", a movie about the Camorra, the mafia of Naples. Lots of the people from my Italian trip should be there (hopefully you too Jeannette!). Rafaele (the head of our program) will give a talk before the movie. Afterwards, we will see the Rockwell exhibit.

Saturday, March 7, 2009

Rats win district title!

Naomi and Tyler. Tyler is wearing the district champs t-shirt that they all were given at the end of the game

AA News photo in the paper today of the girls rejoicing with their trophy.
AA News photo of Naomi hacking away at her girl
The big game was very high energy. A bus was arranged to bring the fans in-mostly consisting of the men's bball team who made lots of noise. The opponents, the South Lyon Lions, were a much bigger team. We do have 2 girls 6 feet and over but one is in the hospital recuperating from surgery. Jasmine is the other but she too is recovering from an injury. She did sub in for Naomi a couple times and did very well. Tyler was left to defend against a girl 5 inches taller and who was very skilled at blocking shots. Naomi took the other big girl. But Tyler was her amazing self sneaking in shots-24 points. In one of her baskets, she threaded under the big girl's armpit to get a basket. We went out to a quick lead but SL soon almost caught up. Our many energetic guards pressured them the whole night to take weak shots. Naomi actually did some good things on offense even though her strength is defense. The last 4 minutes of the game consisted of the guards playing keep away to preserve a 10 point lead that was whittled down to 8 at the last second. There is no shot clock in high school bball. Lots of happy tears and positive vibes at the end of the game. Everyone was hugging each other. The athletic director had made up Championship shirts in advance. I guess she had alot of confidence in the girls. Steve, Josh and I had found Coach Steve earlier in the day when we had gone out to lunch. He was busily preparing a game plan and was very nervous but it all worked out. Next stop: Lansing on my last infusion day, Tuesday, to play Niles, a town in the southwest corner of MI. From what I read, they have a good chance against them. The regional final is Thursday. The winner will most likely play East Lansing, the top rated Class A school. Anything can happen.
The temp was in the high 60s yesterday and sunny. After our lunch with Josh, we took a nice walk along the river. Lots of people out. Today it is supposed to rain most of the day but I will try to run maybe.
An old friend from work, Rick, died yesterday of a brain tumor. He was diagnosed almost 3 years ago with a glioma-a type of brain tumor. During surgery to remove it, he had went into a coma and it was suggested to his wife that since he wasn't going to survive anyway that they not feed him. She insisted on the feeding tube and he did awake from the coma. Brain tumors are very hard to treat with chemo as few drugs can go across the blood-brain barrier. I did visit him several months after the surgery and his mind was as sharp as ever. He still could not eat and it was very difficult for him to move as the tumor and/or surgery did alot of damage to his motor skills. For the past year, the tumor was destroying his cognitive abilities too. I feel very guilty that I didn't visit him more during the year he still had most of his mind.
I hate cancer!!!!!!

Friday, March 6, 2009

My Mom

My mom at 57 with Josh, 2 and Shanna, 4.5. She would later have 4 more granddaughters. "Shayna" Shanna is now carrying her 2nd child.
My mom in her early twenties.
Today would have been my mom's 82nd birthday if she not had Alzheimer's Disease. She had survived breast cancer at age 64 only to have AD ten years later. None of her 4 siblings who survived into their 70s had either cancer nor AD. Indeed, the 3 remaining are very healthy and alert even though 2 of them are older than she would have been. She had a very hard life living with an abusive husband. AD is a cruel disease slowly destroying what makes you you. At one point, she became violent and unmanageable, which was so unlike her. During the last two years of her life, she could not speak (except for the word 'yes') or walk. When I first had to put her in a home in 9-03 (a nightmare in itself-my father was still alive and wanted her to continue to wait on him hand and foot), she would be so excited to see me saying to anyone she saw," Look, look, my mother's here!" This quickly turned to her only being able to say-"Mine, mine" pointing to me. After 2005 or so, it was questionable if she knew who I was other than a vaguely familiar face. In 9-07, she suddenly refused food or to swallow if it was placed in her mouth. I had just seen her 2 days before her hunger strike and she seemed normal. Her 2 remaining pleasures were treats and being able to move. The latter was severely curtailed by the staff as she quickly got into trouble setting off alarms and breaking things. I would take her outside where she'd be free to shuffle herself non-stop in her wheelchair and bring her treats that I would have to ration as she would shove them into her mouth all at once. It is said that AD is childhood in reverse. Indeed this is true. At the point that she needed to be in a home, she had the speech of a 4 year old. She would excitedly show me that she could recognize letters. Her remaining skill was that she could tie shoes-something that few of the 7 year old boys I had coached in soccer had mastered.
When I first was diagnosed with TNBC and read about its particular nastiness, I thought at least now I don't have to worry about getting AD. I really believe that there is a good chance in the next 10 years or so that TNBC can be stopped. I am not so optimistic about AD-much, much more complicated of a disease. Lots of research directed toward it though and I myself had worked on some of these projects.

Yesterday we drove up to the Thumb for one of the mom's dad's funeral. She and her sister had prepared a collage of their father's life-interesting especially with the early pix of my friend. Their dad was a handsome man. His heart attack sneaked up on them but my friend and her sister were there for him. A church lady lunch followed the ceremony-the black walnut cake was especially good. Steve and I stopped in Frankenmuth on the way home, which was built to resemble a Bavarian village, famous for its chicken dinners and the world's largest X-mas store. One of MI's biggest tourist destinations favored by bus tour groups of seniors. We looked in some of its touristy stores, one specializing in old candy that I loved in the 60's. French burnt peanuts, those waxy bottles full of colored sugar water, waxy sweet lips, marshmallow ice cream cones, cigarettes made of sugar, Dots, etc.

District final tonight against the South Lyon Lions. Wednesday this team was 2 points behind the Mounties with a second to go and a freshman made this miracle 3 pointer at the buzzer to win the game. Naomi's team had to analyze that game yesterday (they tape everything). Their big (literally and figuratively) star won't be Naomi's responsibility but she will have to do the tip-off against her. Huron should win but who knows what can happen. I was rooting around SL's website yesterday trying to see specifically what teams had beaten them ( I had knew that Salem had beaten them twice-a team we beat) but instead of coming up with their sports records, I came across their test scores. It turns out that its District's average composite ACT score is only 1 point higher than Naomi's. SL is full of middle to upper middle class kids-no projects. Maybe I am underestimating Naomi's abilities. Once the season is over, could be tonight, I need to focus more on her future. I keep comparing her to a typical Huron student (the school was ranked recently as the top school academically in the state) instead of the population at large. Last night I helped her study for her big Government test today. She is improving quite a bit. I am not sure she is mature enough for college.

I finally received my doctor's excuse from jury duty today along with another beautiful card from Lesa, who makes homemade cards to cheer up bc patients. See LittleLifePreservers.com if you know a patient who needs cheering up.

Thursday, March 5, 2009

Blessings and mascots

Yesterday was a good day overall. Blessings in particular:

1. Harold's (Steve's brother) lymph node was benign. It had shown some activity so they biopsied it. He had been diagnosed with primary brain lymphoma.

2. More insurance issues resolved all due to me having to switch plans twice since treatment.

3. I am in LiveStrong for sure. Furthermore I get to use the Y any time I want during those 3 months

4. Above freezing temps and I walked 1% faster than the day before.

5. The salon will refund my money for that awful wig episode.

6. Despite a badly mangled right hand, Naomi had a fantastic game starting from the openning tip-off (using her left hand) to T who scored with 5 seconds on the clock. Got lots of rebounds-notably offensive ones, steals, and assists. The other Rats did well too handily beating Dexter.

The game was northwest of Jackson at a school aptly named Northwest, Home of the Mounties. Mounties eh, are they Canadians? My freshman (in college)boyfriend went there.They had to stay to watch the 2nd game of the night as they will play the winner: Mounties vs Lions. We left with the Mounties ahead by quite a bit but the Lions came back and won by a point as we drove home. Damn. Their center is 6'2. Naomi will have her hands full. But the rest of the team is slow and clumsy and we've beaten a team that beat them. Is there transitivity in bball games? I hope so.

In one of our many threats to make Naomi to behave, we've threatened to send her to Dexter where Josh lives. Aside from not loving their athletes, she said they have the worse mascot ever, the Dreadnaught, which is some kind of pirate boat. This year they played the Rocks, (Plymouth based-get it?Naomi didn't)the Kicking Mules, the Maples, the Indians,the Railsplitters, the Yellowjackets, the Bulldogs (very common name) and of course the Pioneers, amongst others.
My favorite name is Sharon's Terrapins. Why name your team after a turtle?

One of the moms father died and we are off to go to his funeral in the middle of the thumb. The hand is so useful as a map for Michigan geography. The thumb area is absolutely flat full of sugar beet and potato farms. Caro, our target town, refines sugar from these enormous beets.

Wednesday, March 4, 2009

We're Number Nine!

According to the AP poll taken Saturday, Naomi's team was ranked ninth in the state.


Michigan prep girls basketball poll
3/3/2009, 7:12 a.m. ET
The Associated Press

The top 10 teams in the Associated Press high school girls basketball poll, with records through Sunday in parentheses. Totals are based on 15 points for a first-place vote, 14 for second, etc.
___
CLASS A:
1. East Lansing (20-0) 75
2. Grosse Pointe North (16-4) 67
3. Birmingham Marian (19-1) 66
4. Detroit Renaissance (15-3) 58
5. Benton Harbor (18-2) 56
6. Temperance Bedford (20-0) 49
7. Saginaw Arthur Hill (16-4) 47
8. Canton (18-2) 37
9. Ann Arbor Huron (17-3) 27
9. Brighton (16-4) 27
Also receiving votes: Midland (17-2) 25, Detroit King (14-4) 22, Flushing (16-4) 18, Livonia Franklin (17-3) 8, White Lake Lakeland (15-5) 4, Detroit Southeastern (13-3) 4, Lake Orion (18-2) 4, Dearborn (18-1) 3, Okemos (16-3) 1, Detroit Pershing (13-4) 1, Grosse Pointe South (16-4) 1.


Sadly we had lost 2 of our games to the sixth ranked team by 1 and 2 points respectively. Very annoying as we had beaten them in the past. The districts continue tonight but Naomi's hand is very swollen from Monday's game. She has been starting for the past 3 weeks but we'll see tonight.

After today, the temps go up into the 50s and 60s. Can't wait. I continue to be able to walk faster and faster. I am thinking a large part of my improvement must be due to distancing myself from the Red Devil. At some point I will measure how far I went yesterday. Last week, the day after dosing and I still felt OK, I had 20 minutes left in my walk and 2 ladies jumped in front of me. I thought I might be able to keep up with them but no, at the end of the 20 minutes I couldn't even see them, which made me very sad. Also the LiveStrong lady thinks I can join the April class. I will be doing my rads then but hopefully that won't be a problem though my blog friend Sharon was told she can't shovel snow anymore or lift more than 15 lbs on rads.

My neighbor wrote me a nice note (received in the mail though she lives right next door)yesterday offering to help if I need it. Her husband is still dealing with the aftermath of prostate cancer but seems to be be recovering just fine despite some dire predictions. Prostate cancer, like breast cancer is usually (not for me however) sex hormone fueled. Blocking male hormones results in osteoporosis.

Steve and I went out to lunch yesterday with some former colleagues, Larry and Mary. Steve had worked in the same lab as Larry back in NJ more than thirty years ago. We had a nice time. Their son, who lives on the Upper Westside in NYC happened to look out his window and saw that plane a few weeks ago land in the Hudson River. Quite the sight! He had witnessed both planes crashing into the Twin Towers on 9-11 also.

Despite the painful hand, Naomi seemed in a good mood and I let her watch Flight of the Conchords with me. Very funny though she didn't grasp all the Simon and Garfunkel jokes.

Tuesday, March 3, 2009

Skinny papers


Naomi and our patio in sunnier times. This dress we got on quick-sale for $7. However our savings were negated by her insistance on an expensive hair styling.

It's the sign of the times that everyday the newspapers we subscribe to become thinner and thinner. The Free Press will become so thin that it will cease to exist except by web 4 days a week! We do get the Wall Street Journal, which I feel compelled to read because of my second career as an 'investor' but that indeed is work. I love to read newspapers making morning my favorite time as I sip my coffee (coffee aversions-all gone). I then do my puzzles proving to myself that I am not suffering too badly from chemobrain. Best of all is to sit on my patio surrounded by all my flowers watching the hummingbird while reading the paper with my coffee but that will have to wait. Today is another very cold day but it will start to warm tomorrow. Thankfully still dry unlike my east coast family who are knee deep in snow. It was all of 19 deg yesterday with a very stiff north wind when I did my walk. I am becoming faster and faster, which makes me happy. I compulsively time everything.

It was the first night of districts last night. The games were supposed to be played 45 miles away in Jackson but since it was the two Ann Arbor schools, we got special permission to stay here at Pioneer and save bus money. Even though Huron has handily beaten Pioneer for the past 8 games or so, it was a struggle. In the middle of the game, Pioneer was actually ahead. Tyler couldn't score (the state's leading scorer) and Naomi played badly. Her two subs played even worse so the coach was forced to go with Naomi. However, some of the other players stepped up and Huron ended up winning by a good margin. Their next game will be against a weaker team Wednesday-one that Naomi plays especially well against.

Monday, March 2, 2009

No I don't accept your cancer card

The Wellness Community holds a special support group for teens whose parents have cancer to help them deal with the fear of possibly losing their parent. No fear here and definitely no breaks for the cancer parent. In her eyes, there should be no reason that things shouldn't continue as normal just as long as I wear my wig, which she prefers to my real hair. I don't look all that sick to her. She continues to be incredibly difficult to deal with and in no way is she ready to leave the nest.

Brenda came over around noon with great coffee, which I am sipping as I type and tasty pastries. I asked Naomi to show Brenda her collage and she flatly refused being very rude to Brenda and then stomping out of the house leaving the door wide open. When I went into her room to retrieve it, I found a bag of cupcakes that she insisted 6 weeks ago that Steve had to buy for Tyler's birthday for $16. Now I never would have bought these overpriced, nasty things but I was furious that she has so little regard to our money and time. This on top of her going over her texting limit and her nightly 2 hour phone calls to the boyfriend. So no more funding her trips to Bubble Island with Carmel, no computer or TV. She remained unrepentant and claimed I didn't have a suitable plate to present the cupcakes. I didn't even know they had been bought at the time much less that she needed a container for them. So she just let them rot. She had to clean her room thoroughly the other day while we were gone on infusion day. She should have just thrown them out and I would have never known but she was too lazy.

Plans need to be made for her future. During my stay in chemoland, I very often lack the mental energy to deal effectively with her. She at least is doing better in school.

It is very cold here and no relief until Wednesday. Thoroughly bundled up, I did my almost 4 mile walk. It is at least sunny and dry.

My myalgia is almost gone. At times I don't feel it at all except that the bottoms of my feet feel very sore and it's not from my walks. Ninety-one days in chemoland, twenty-one to go. Maybe I'll have only a few more bad days and then let the healing begin!!! Need to get a doctor's excuse to postpone jury duty.

Sunday, March 1, 2009

I hate taxol





More pictures from senior night, two of which are from the AA News Website. Steve took the one of the 4 seniors plus a teammate who graduated last year. The bottom picture of Naomi bumping bellies with Jasmine as she was being introduced as a starter was in the paper yesterday. I didn't even notice it but Naomi's boyfriend called her to alert her to it. I guess it's a good sign that he reads the papers or at least thumbs through the sports sections. She doesn't want him at the games as he is some former bball star and would be too critical if she screws up.
Later as I was flipping through the TV channels, I stopped when I saw my daughter's face in the center of the TV screen, community access had filmed one of her games apparently.
Steve accessed our cell bill. She spent 3000 minutes last month talking to this boyfriend-mostly late at night. Aaargh.
Further aargh: I got a notice for jury duty for circuit court. As I still am dealing with chemo and radiation, I need a doctor's note to excuse me and they want it NOW so more phone calls. I never have been asked to do circuit court (major cases) just district court (minor cases). Washtenaw County is divided into two districts: Ann Arbor and non-Ann Arbor. I was living in one of the outside townships (still in the school district) when I was on the district court roster so I needed to travel from court house to courthouse for 2 weeks. Mainly I was excused from every panel and I always wanted to ask why I was rejected. Finally I was empanelled for a violent resistance of arrest case as the only female juror. I was immediately nominated as the foreman as my fellow jurors wanted to see what they would call me but when the major moment arrived, they just asked, who speaks for the jury? It was interesting with some ethical issues arising. One of the jurors told us he knew the whole family that the defendant came from and they all were evil. Why didn't this guy excuse himself? He now poisoned us and I should have went to the judge but I thought the guy was guilty before this. Another juror pointed out how unfair that was as he, himself, had a criminal brother and he would have hated to be judged by that. I remembered the last name of the defendant and over the years, his family members have been involved in all sorts of evil.
Steve served on a circuit court jury a few years ago on a much more interesting case. He ended up on national TV (Cold Case Files) as his jury convicted the guy despite seemily weak evidence for a murder that occurred 40 years ago. Advances in DNA technology made it possible to use DNA found on the victim to be screened against a database of felons and they had two hits: one against the suspect tried and ultimately convicted and another for a felon who would have been 4 years old at the time of the murder. The latter really compromised the case. During that time, there was a serial murderer operating in Ann Arbor and Ypsi speciallizing in killing and torturing co-eds who was ultimately convicted of killing at least one of them. The MO of Steve's victim was completely different from the others leading some to think there was a second killer, Steve's guy. The whole murder episode had alot of press and was scary because I was planning to go to UM though the main murderer was caught right before I was a freshman. Steve was completely ignorant of the case as he grew up in NY and pointedly does not read local news stories unless they are about Naomi. I am not saying any names as this case is still on appeal and again I am subverting google.
Anyway, being on Taxol is no fun even though I realize that it may save my life. It is much more effective against preventing mets for us estrogen negative ladies than the positive ladies. During the day, my pains seemed to be minor. Indeed I went for a long walk covering 10% more distance in the same amount of time. At night however, all I could feel were my muscle aches and very sore feet and I could not sleep. I finally went back to the drugs. I was having a major pity party-poor me in so much pain, neglected by friends, bald, tired, could die a painful death despite chemo blah, blah, blah. It really is hard to be positive. I know I need to count my blessings and ignore that 25% figure of doom but sometimes it is hard, especially when I am in pain. Sometimes I sound like Nancy Kerrigan with her infamous wail, "why me?" after Tonya Harding arranged to have her knee-capped. Why me? indeed.

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