New grandbaby!!!!

Shanna finally let me share the good news today that Oliver will be a big brother 9-11-09. She wasn't sure how pregnant she was before today but the ultrasound showed a strong heartbeat and everything else looked good for a 10 week old fetus. Something to look forward to!! She and Oliver will fly out to Seattle next month with us. Her Boston flight has a one stop in Detroit. Guess whose flight is cheaper? More evidence that Michigan can't catch a break.

This Taxol is the pits. Although the vicodin keeps the myalgia down, it makes me dizzy and queasy. I am trying to take it only at night. I did go on a walk today but it was very difficult. I am also growing a new set of Mees' lines.

I went to the support group at the Wellness Connection. Only 2 other survivors-one I had met before in a wig store. She is positive only for Her2, which in the past would have been even worse news than triple negative. Herceptin gives her much better odds but she might need to take it 2 years at $100,000/year. The other lady just finished radiation for an estrogen positive small tumor. No chemo, just needs to take Tamoxifen for 5 years. Wish I had that type. The Wellness Connection gives free lunches. Normally I would love pasta primavera but it just tasted like acid to me. I did eat a lemon bar which tasted fine.

Later I am meeting up with old colleagues for Happy Hour and then to Naomi's bball game. Hope I can keep my energy up.

My first yoga

Even when I was the epitome of health, I had two huge strikes against me for being 'good' at yoga: No flexibility whatsoever. Years of running have not improved that. I do try to stretch but my range of motion is pathetic. Also: I have postural hypotension i.e. I faint if I am standing and not moving. Coupled with being on vicodin for my bone pain and myalgia, which makes me nauseous and dizzy, suffice it to say, I had a rather sucky experience. This was 'gentle yoga' for cancer patients at the Wellness Connection. All of the other participants were out of treatment. The instructor was very understanding and supportive letting me just lie there as the others went through their positions. Maybe next week when I am not on narcotics, I will do better.

So this is my 'bad' day. Late last night I started to get bone pain from the Neulasta and the myalgia came back. The latter is at a low level due to the vicodin but I am very sleepy and nauseous. I better feel better tomorrow as I have planned several activities.

We are trying to plan around several schedules to go to Seattle with Shanna and Oliver next month. A pain. Bball should be over (unless they go to the State Final). There will be 2 nights that Naomi will be on her own, which makes me nervous.

Josh and Julia will be gone the week before to Jamaica. He had a huge presentation today and developed 'brain freeze'. No words came out of his mouth for what seemed like an eternity to him but then he finally started in and was fine. His colleagues said he was only frozen for 5 seconds.

I went to the UM support group last night. Unfortunately, most of the time was usurped by a guest speaker, who spoke twice as long as planned, on guided imagery complete with boring (to me) exercises. Imagine your happy place... There was a new woman there recently diagnosed with TNBC. She is shell-shocked and extremely upset. Despite being a nurse, she didn't seem to have a clue what she was going to be into. It was a surprise that to her that they most likely will recommend chemo.

As I was going through pages of postings yesterday trying to get a feel for how TNBC metastasizes, I came across one lady that developed bone cancer 10 years out from her original diagnosis. Strange, as usually TNBC manifests its evil much earlier. But they happened to do pathology on her bone tumor-it was estrogen positive!!!! It meant they made a mistake on her original tumor and she went through all sorts of hell for no good reason. She just needed her estrogen blocked.

Zometa

Zometa is a drug that is used to build up osteoclasts in metastatic breast bone cancer. It slows done the growth of the tumor significantly and in some cases, cures it. Now there are trials to see if it will prevent bone metastases. Preliminary results are in indicating that not only does it cut down on the number of bone metastases, it cuts done on other metastases too although there is not a good explanation for that. Most of this work has been done on estrogen positive, node positive ladies. See http://www.biovalley.ch/content.cfm?nav=4&content=10&command=details&id=8803The first place for metastases in these ladies is in the bones. Not true for triple negative which seems to go to the lungs, liver, brain and then bone. My oncologist has been pressuring me to sign up for a clinical study for Zometa in triple negative patients and plans on having the papers for me to sign in 2 weeks.

Whoa. Hold on. I'm not sure I want to do this. First of all, monthly infusions over I don't know what period of time. I want this whole business over with in April. This is what is keeping me sane. Second of all, the drug has its own problems-the most serious is osteonecrosis of the jaw. They recommend no dental work at all while on it and I need some work soon. Minor problems include bone pain. So the idea behind the drug is basically to build up bone strength so the cancer can't burrow into it. What I have are strong bones!!! I had them tested 2 years after menopause and I was not on replacement hormones yet, and they were stronger than the average 20 year old. I was running 100miles/month and I'm a big girl. I had them tested again while on hormones, same result. Now it's true I snapped my humerous in half but it was hit very hard.
Third of all, bone mets in TNBC who are node negative are rare. I went through all the ladies today on the TNBC web site who have mets (this took forever!!!) cataloging them. Of the 77 people with mets, 12 of them had it in their bones only. Lungs were the favorite site. Brain was tied with bones. In any case, only a few of these ladies were node negative. Also I think the bone people were over-represented as they have much longer to fight their disease and find their way to this website. Brain mets work fast. Some of the cases on the website were reported by their significant others as the patient was too wiped out to go on line.

So no problems yet. No queasiness either so what I suffered last time must have been left over from the RedDevil. Went for a nice, long walk today. I had plenty of energy. Tomorrow the myalgia might start but I will knock it down at the first hint of it with drugs. Steve will give me my belly shot of Neulasta when I get off of this.

There is a support group tonight at UM that I went to 2 months ago. Might as well go.

Chemo Round 6

Only 2 more to go. On the night before chemo, I am usually too anxious to sleep. Also I am to dose myself with Zyrtec and Zantac 6 hours before infusion so this meant getting up at 3:45 am. According to my bloodwork, I am doing fine. As predicted by Dr. Henry, my red count is still low but it didn't get any lower. She thinks now it will rise. My myalgia problem seems very common. This time I will take the vicodin at the first sign of pain. They were late starting the infusion. I was at the hospital for almost 7 hours. Boring, boring.

Marilyn called to suggest this affirmation tape the Cancer Resource Center hands out. Not sure what is on it- I will survive. I am stronger than cancer, I am a fearless warrior. She also thought that I should be taking B complex vitamins as UM's recent research says they help stop neuropathy although I don't have it (knock wood) and she does. I will look into this. While I was getting chemo today, I was watching American Beauty and there are several parts with Ann Benning playing the whacked-out real estate agent listening to affirmation tapes to motivate herself. They made me laugh.

Jo and I watched Revolutionary Road last night (same director and feel as American Beauty) but much sadder and less humor.

Record highs today but I am too tired to take advantage of them. I came home to find several of my neighbors dealing with ice dams that were preventing the drainage of our street. I finally told them I had cancer. I also think I am too tired to go to Adrian tonight for the bball's away game.

Naomi I Moan

Oliver enjoying his birthday cake

The palidromic title is fitting. It didn't take too long today to get on her bad side. Usually the bus picks her up in front of the house around 6:45 am. First of all she is furious that she needs to take a bus at all as she is a senior. I used driver's training as a reward for reasonable grades in school. When this did not occur, she did not receive driver's training until this fall. The earliest she can legally get her license is at the end of next month when she turns 18. She left the house today at 6:45. I waited 5 minutes to let Spud out, who was anxious to get out the door. Unfortunately, the bus hadn't come yet and we ran into a furious Naomi embarassed by both Spud and myself. It was also cold. We all had to wait an uncomfortable 10 minutes while Naomi ranted about the indignity of it all while Spud paced.

She thinks the seas will part when she turns 18 in 6 weeks. Acrylic nails, various piercings, boyfriend visitations, unrestricted driving-all of which she thinks are adult 'rights'.

Yesterday her team travelled to E. Lansing to see S, a former teammate, play on OSU's bball team vs MSU. Shavelle also is a first cousin of Naomi's boyfriend, the mythical Dante. Unfortunately, S was injured early on in the game and was crying as she limped off court. Some MSU fan shouted "There is no crying in basketball" and Naomi's whole team turned on him.

I am impatiently waiting for the temp to rise so I can run without slipping on the ice on my last good day before being poisoned again tomorrow. In the meantime, I am trying to envision a world that doesn't revolve around my cancer. For starters, I do have a break in between chemo and radiation that I can fly with Shanna and Oliver to Seattle to visit his great-aunt Maddy and great grandma. Still toying with the logisitics of that. Also in the late fall, a trip with my friend Teri in CA.

I will go to a movie tonight with the Moms That Have Been Left Behind. Two of the moms are in warmer climes  leaving the three of us though one of us gets to go to Africa soon.

A Triple Negative in My Neighborhood

About 2 months ago, I learned that there was a woman that I knew slightly in my neighborhood also dealing with breast cancer. I had sent her a note asking her to contact me if she needed support, to share war stories, whatever but no reply. I was just walking by her house yesterday (after my run) and thought of her puzzled by the lack of response. Big, whiny baby that I am, I assumed that maybe she just didn't like me. Just when I was thinking those negative thoughts, according to the time on my answering machine, she did call me!

M is around  my age and was diagnosed the same week I was with TNBC. Although ladies with TNBC are easy to find in cyberspace, I have yet to meet up with one in person. I've met a few triple positives but most ladies I find are estrogen positive, her2 negative. M began chemo (the exact regiment I am on) 2 weeks before me. I should have started that week too and I keep kicking myself but can't travel backwards in time. It has been really kicking her butt, which accounts for her isolation. Mainly she is very anemic, sounds breathless, has swollen painful ankles, and is just downright fatigued. She also reacts poorly to Taxol, which they give over a very long time instead of the usual 3 hours. Her tumor was smaller (she found it herself but it did NOT show up on a mammogram) so the odds calculator gave her much nicer survival numbers. But I was thrilled to find someone whose situation is so similar. Our sons are the same age and are both engineers. (I knew her from when they played baseball together)

The high was 51 and sunny. Tropical for us in the frozen Midwest. It is still sunny but is 36. Fine for a run.

I went to an Oscar-nominated shorts festival  last night. I especially liked the animated shorts-much more creative. Some of the "live" ones were depressing, especially the German "Toyland" which will probably win in 2 weeks.

Silly stuff in cyberspace

Lots of junk in cyberspace. Over the past week I've read: The Government knows what causes TNBC and knows how to cure it but won't. (not sure why not, to be mean, to make money?!?).
TNBC can take replacement hormones with impunity as their cancers aren't estrogen-fed.

Now the last statement is a dangerous one derived from that silly Suzanne Sommers who thinks she has found the fountain of youth by sucking up large doses of 'bio-identical' hormones. She was on Oprah the other day with examples of depressed, dried-out ladies, suffering from hot-flashes turned into cheerful sex fiends with just one week of estrogen. This is a woman who has had breast cancer cured, as she says, by mistletoe extract. No mention of what kind of BC but even with my not-so-nice kind, I could have forgone the chemo, painted my fingernails blue, and still have had a 50% chance of surviving. The number one risk factor for BC is exposure to estrogen. This has been proven with numerous studies. Now with TNBC, the link isn't so clear as TNBC hits a different population but there is no saying that our TNBC didn't start out as estrogen positive. We certainly aren't immune to estrogen positive breast cancer in our remaining breast or breast tissue that remains after a mastectomy. They had doctors on the show with opposing viewpoints-mainly stressing the concept of' bio-identical' hormones is an empty one but they didn't stress the dangers enough!

For some fun stuff from cyberspace, my favorite Flight of the Conchords: http://www.truveo.com/Flight-of-the-Conchords-The-Robot-Song-Humans-are/id/639283845

We now have a thaw. No highs below 30 for the next week! Steve and I took a long walk yesterday. I am getting faster. Today I even went for a run. Easier than on the AC cycle but still a struggle.

Naomi was in delightful form yesterday-not sure how well sarcasm travels in cyberspace. She couldn't find part of her uniform and blamed everyone for its disappearance. Turns out she had it stuffed into some pocket of her bag the entire time. Steve meanwhile refused to go to her game to punish her so I went by myself. Since the 2 other posts are injured, she got lots of playing time against a weak team but still had a bad game.