Mees' lines

So these white lines that are 1-2 mm thick 2 mm from my cuticles running the width of 8 of my nails are called Mees' lines. . Could be a sign of arsensic or heavy metal poisoning but in my case, chemo. A minor insult as far as my general cosmesis is concerned. Cosmesis seemed to be the favorite word of Dr. Pierce, the rad onc as in the 3 week protocol could result in negative cosmesis. The adjective form of this rarely used noun is more familar: cosmetic.

Negative cosmesis: I certainly have that. Runny eyes and nose. No hair, pale skin, greatly hacked up boob, etc. It is very hard to look in the mirror.

But I am feeling and sleeping better. After my lunch with Josh (assuming he hasn't forgotten me), I will go for a walk once the temp jumps up 30 deg.

mall walking

So I didn't walk yesterday as it never got above 15 deg and there was a very strong wind. Today, despite the forecast for 25 deg, it was even colder and our pipes froze again. My friend and I went to the mall for our walk-round and round and round. I even got sweaty under my wig. I read from others on how hard it is to wear a wig in the summer as they could be so hot but I am hoping for hair by then.

Today I opened my sticky eyes to all whiteness. Damn, I'm blind! But no, my sleeping cap fell over my eyes.

I didn't feel bad at all today, not even any queasiness. Just runny eyes and nose and I don't have a cold. So I guess I will feel good until Tuesday, when I am poisoned again. Maybe this time I will start sucking up the vicodin at the first sign of 'myalgia'.

After our walk and talk, we came back and watched some Flight of the Conchords. Very funny. Later I got a package from Teri with enough CDs to last me through chemo. Thanks so much!

Quintuple negative?

The phrase 'triple negative' to describe my breast cancer has only been used for the past 3 years. Before that, bc was divided into 2 main groupings: estrogen positive and estrogen negative. Survival sadly (for me and my negative sisters) differed considerably between the two groups but now, with early chemo the gap is closing. Overexpression of the her2 protein in certain cancers and a drug targeting it (herceptin)has been known for at least 10 years. But the following steps have to occur before a promising cancer drug can be approved for use:

1. Proof of concept. Does the drug work in vitro? For Herceptin, does it stop the growth of cell cultures that over express her2?

2. Animal models. Does it stop the growth of her2 tumors in animals? There is a huge gap between what happens in vitro and in vivo. This fact has been drummed into me over and over in my career as a medicinal chemist.

3. Toxicity studies. Benefits better outweigh risks. Fortunately a lesser standard is held for cancer drugs vs an anti-depression drug. Still these studies can take years.

4. Clinical trials: the drug has to show a benefit in patients (metastatic breast) over everything else has been tried.

5. If the drug is found better than anything else for metastatic cancer patients, it can be approved for those patients only. It can then be tried for node-positive early breast cancer.

6. If survival is increased in early node-positive breast cancer over the standard treatment, then it can be tried in early node-negative breast cancer and eventually approved for use in those patients.

All those steps take years. I am hoping that the term 'triple negative' is short-lived. That other growth factors are identified that make such a big difference in survival and are targeted. Some have been identified and drugs targeting them are on trial such as Avastin for VEG-F. Did they test my tumor for VEG-F? Or any other factor? No and it annoys me. But meanwhile the database used to predict my survival included the her2 positives. Also it included node negative women who did not receive Taxol. Taxol has only been recently used for early node-negative cancer. I'm still trying to pin down how recently. I do know that it isn't as useful for estrogen positive tumors.

Maybe I am just grasping at straws trying to console myself that my chances for long term survival are greater than the 70% the computer spit out. They are but how much more is very hard to quantitate.

Too cold to walk today. I'll go for a longer walk than usual tomorrow with Deb. Resolved a few insurance issues (maybe-what we are promised isn't always the reality).

Naomi got to start in last night's game but played so poorly.. The dreaded grades came in but they weren't bad as I feared. Naomi had a hint as the coach gets them before I do (how is that right?). He had given the team a lecture about certain individuals bringing the team average down and then looked at Naomi, but it isn't Nay for a change-congratulations to her.

As for Naomi, she has been behaving much better recently. If she maintains a certain average, we will give her our oldest car. She will need one next year for sure but she is motivated and trying very hard to keep on top of schoolwork.

Ringing the bell

I dedicate this post to Renee my blog sister in Seattle who rang the bell today indicating her final radiation treatment. Some infusion rooms and radiation treatment centers have bells to ring when the final treatment is over. It is a huge milestone in the life of a cancer patient. Renee is just slightly younger than myself and had a similar tumor. She had a different chemo but what interested me the most was that she was found eligible for the 3 week Canadian study radiation. In the blogsphere, I haven't found many people who've gone through it much less a TNBC warrior. She gave me the strength to demand it even though I might have sounded like a petulant child: But you let Renee have it...

How I spend my time

Oliver on Times Square

Andy Warhol does Naomi

The above are examples of my handiwork from a tip from Rural Woman, a TNBC survivor. You too can have fun using the program at http://www.photofunia.com/.

So how my life has changed from having every moment scheduled to now as the moments slowly tick by in chemoprison. Not too long ago, I bought this beautiful fused glass clock the shape of a tropical fish-it was very inexpensive and it looks nice on my wall. It ticks so loudly, I can hear it in every room in the house. It is a constant reminder of my time slowly ticking away.

My day: 9 am: Awake and eat breakfast

9-10 am: Read paper and do puzzles

11am: Write in blog and catch up on e-mail

12-1: Make phone calls

1-2: Walk for an hour

3-5: Visit with friends-Yesterday I was treated by a visit from Brenda

5: Watch boob tube

6: Dinner

7: Deal with Naomi, talk on phone, check e-mail, read

10: Try to sleep

12: wakeup agitated. Read, do puzzles, think useless thoughts, try to sleep, read , think more useless thoughts.

5 am: Finally sleep

9: Awake

Exciting huh? Sadly I don't have much energy for much else. Not all is gloom and doom. I didn't need viocodin to sleep as my pains have diminished considerably.Yesterday as I was writing about chickadees, my cousin Wendy sent me a cute card with a chickadee on it. Even though the temp dropped again, it was sunny and windless. This time my neighbor Jody walked half my route with me. Brenda stopped by with good company, pretty flowers, fresh raspberies and nocciola (hazelnut gelato). At night, I reconnected with my college pal John M. Some of my readers would remember him. He has turned into a political activist along with his tree farming in the Piedmont on a restored tobacco farm. He is no longer a practising clinical pyschologist. It was fun catching up. I hadn't seen him since Josh as a high school senior, had a soccer tournament in Raleigh and we paid him a visit. Naomi had to write a paper for Government on what 3 things Barack has done so far that relate to the US Constitution. She needed alot of help for that. Unfortunately this turned into a political disagreement between Steve and I.

Benign!

I finally got the call today about my suspicious, very black mole that was uncovered on my scalp when I lost all my hair-benign.

This new insurance continues to keep me busy. They require referrals from my primary for everything or they charge us 30% co-pays. We have now an impressive bill. However despite numerous calls, these referrals hadn't been sent out. I finally remembered the name of the woman responsible for this f*ck-up-Debbie. Eventually everything should be straightened out but my advice to anyone in a similar situation, write down the name of everyone you talk to.

Yesterday it was close to 40 deg and sunny-it hadn't been above freezing in almost 6 weeks. We went out to Kensington to see the birds. The usual winter flock, consisting of mainly chickadees, tufted titmice, nuthatches and the occasional downy woodpecker, was quite happy to see us and our walnuts. Yesterday the wild turkey flock wanted their share. We've seen them before from a distance. They didn't want to eat out of our hands like the chickadees but they would eat the spillage from the little kids trying to feed the songbirds. They are quite pretty. It was fun seeing the little kids' reactions to them. The turkeys were taller than some of the toddlers. Actually many of the adults there had never seen a wild turkey before. We found an evening grosbeck feather. I haven't seen a grosbeck (at least the yellow kind, I've seen the rose breasted variety) since I was a kid in upstate NY where they were winter regular visitors to our feeder. Bird populations are quite different than they were when I was a kid even in Michigan. Where we lived in NY had a completely different terrain. The only constant seems to be blue jays. I always seem to have at least 2 pairs of them on my property. My mom had a strawberry patch, their favorite food, where my kitty would lie in wait. They would circle noisily around her head confusing her so she would never be able to catch one.

I digress, per usual. It was good to get out of my cave and move although the snowpack was quite slippery.

I still have muscle aches, though not nearly as severe as last Thursday. I can ignore them during the day but I still need vicodin to get me through the night.

It cooled down again but still warm enough for a walk which I will take soon. 

White stripes

The Red Devil destroys all fast growing cells-mucus membranes, oil glands, hair follicules, hopefully cancer cells, new red and white blood cells and presumably finger nails. However my nails had been looking pretty good and have been growing at a steady rate. Dr. Henry was admiring my healthy nailbeds and told me that since they survived A, I should be able to finish chemo with a nice set of nails. However today I noticed dead zones on all of them in the form of a white stripe 2mm thick. Healthy nails are below and above the stripe. Some of my blogging TNBC buds have nails falling off with gross, painful infections. I was hoping to avoid that.

My muscle aches have gone down quite a bit so I stopped the vicodin except to go to sleep. The bottom of my feet are very painful as if I had walked miles and miles. It's been almost 3 weeks since my last red devil treatment but I still have periods of queasiness.

60 days down, 52 days to go. Time continues to slowly tick by. I look forward to life outside my painful, cold sphere. Most of my friends are now gone or too busy to visit. I took another long walk even though it was cold and windy (it is above freezing right now-joy, joy). Josh came over with updates on his life. We were watching an ice skating exhibition on TV to see one of his close buddy's little brother skate in ice dancing. He and his partner were the juinor national champions. I remember Evan as a cute little toddler watching his big brother play soccer with Josh and now he is on national TV.

I have contacted my film professoressa Elena for some suitable Italian movies to cheer me up. She immediately supplied a long list and mentionned she was organizing an Italian film festival at the end of March in Ann Arbor. So Nancy, if you are reading this, you have to come. I really admire Elena.

Nights continue to be the worse. I am so tired but all the aches and pains that I manage to ignore during the day make sleep impossible. I kicked Steve out again. He must have the patience of Job to put up with me. I had him try to rehydrate my scaly skin yesterday as I can not reach everywhere. He hates having greasy hands.

Had a nice talk with Shanna today. I was hurt yesterday when she didn't return my call but Oliver had put her cell in a glass of coke cutting her off until they could dry out the components.