Saturday, February 28, 2009

River Rat Senior Night

Last night was the final game of the regular season and Senior Night. Naomi is one of the four seniors on the team and they all were honored with a huge poster, a collage, lots of flowers and balloons, individual gift bags and a fancy cake. She also played quite well against Chelsea. Their center was a former friend of hers from travel volleyball. I say former as this girl kept calling Naomi 'bitch' and hitting her in the face. Surprisingly Naomi did not retaliate, which she has been known to do in the past but her assaults upon Naomi did not go unnoticed by the rest of the team and the Chelsea girl soon found herself flat on her face. The refs were unbelieveably bad. I always wonder if there is a racial undercurrent behind their bad calls or maybe in this case they were rooting for the underdog as the score was quite lop-sided. (Huron's team is largely African -American). It was their last game at Huron. Districts start next week. Naomi felt quite honored by all the attention.

My myalgia thankfully has almost disappeared. I was quite sore last night but the Neurotin helped me sleep. I think I can be drug-free for today.

I had lunch at the good bento box place on campus with Josh. I am so proud of the way he turned out. We always have good conversations and am so glad he doesn't have to move out of state as we all feared.

Yesterday my brother-in-law had surgery to remove a suspicious node in his neck. I assume that the pathology report isn't complete yet. He was diagnosed with primary brain lymphoma almost 3 years ago-a puzzling disease as there isn't a lymphatic system in the brain. The odds were very much against him and he went through hell with chemo yet he has survived. On top of it all, 2 years later, he was diagnosed with melanoma but thankfully, a very early stage lesion (he has red hair and pale skin). Complicating everything, he had an aortic valve replacement about 11 years ago so he needs to take coumadin to prevent blood clots from forming on the artifical valve. Coumadin levels are very hard to stabilize. To have surgery, he needs to be off coumadin for several weeks, which puts him at risk for clots. This has very much complicated his treatment. That such a nice person has to go through such hell is just another example on how unfair cancer is.

Friday, February 27, 2009

Neuropathic pain

Somehow Taxol manages to temporarily inflame the nerves. This seems to take two forms: peripheral neuropathy in which the fingers and toes are numb or tingling and myalgia in which the muscle fibers feel inflamed. My thighs feel swollen and tender even though I did nothing to injure the muscles themselves. Usually sore muscles can be soothed by rest, massage, hot baths, NSAIDs, etc but the myalgia caused by nerve damage is completely different. As for the peripheral neuropathy, I have a very mild case. Some people lose their fine motor skills e.g. can't button their clothes. Somehow it includes tingling gums for me.

During the last 2 cycles, I had only 3 bad days of this and am hoping that it doesn't last longer for this cycle or the last cycle. The vicodin cuts down on some of the pain (but causes nausea, spaciness and possible liver damage) but I was hoping for something that specifically targets the myalgia so I called as soon as possible yesterday begging for Neurotin (gabapentin). Two hours later, the nurse calls and says it isn't appropriate for me as it takes up to a week to work but she would discuss my case with Dr. Henry and eventually get back to me with some alternatives. Ten hours after my original call, I get a call saying that I can have my Neurotin but if it doesn't work, I might need to have weekly Taxols instead of the dose dense protocol. I said I would tough it out as I don't want my days extended in chemoland for any reason. The Neurotin seemed to cut down on the tingling (which really doesn't bother me too much) and I felt a little better. Also I was able to sleep until 5 am when the myalgia woke me up.

I was able to walk fairly well before the myalgia kicked in yesterday. I am taking as little vicodin as possible, I am to gradually increase the Gabapentin but if the myalgia goes away by tomorrow, I don't really need it.

I did a little research yesterday. Calcitonin is also made in the gut so it doesn't matter that my thyroid doesn't manufacture it anymore. Still investigating the role of the parathyroids.

Rainy, drab day today. Josh will take me out to lunch, which I am looking forward to and later, it is the final bball game of the season. They are having a special ceremony to honor the 4 seniors of which Naomi is one. We will have to make more concrete plans for her future.

Thursday, February 26, 2009

Racing thoughts

I've been having a hard time sleeping as I can't get my mind to stop thinking. They aren't depressed thoughts at least nor am I obsessing over some small injustice as I have been known to do in the past. Still I can't turn my mind off.
Right now I am waiting on the nurse to call me in prescription for Neurotin to deal with my neuropathic pain that is beginning. I don't want to take Vicodin anymore as my liver enzymes are out of whack and the Vicodin contains large amounts of Tylenol that probably make things worse.

Yesterday I went back to the clinic to have my Neulasta shot. I had to wait 20 minutes and they insisted on re-taking my vitals. No big deal except he had a hard time getting my blood pressure and painfully cut off circulation in my arm trying to get a reading. He wanted to give the injection in my arm when I had been told that the belly is the least painful spot. He claimed to have perfect technique and that I wouldn't feel a thing. BIG FAT LIE! It really, really hurt. This might be my last shot anyway as they sometimes don't give it for the last cycle. However I will be taking a long plane ride during my last cycle, full of recycled potential pathogens so I might want to get one anyway.

I was able to go for a nice walk yesterday. Not sure if I can today as I am starting to feel bad. Maybe if the Neurotin kicks in on time and works. This afternoon we are to have huge rains. I think I will skip yoga as I shouldn't be driving on meds. One major blessing: one very personal part of my life that I thought the Red Devil had permanently killed has started to return. Still no sign of hair regrowth though.

Wednesday, February 25, 2009

Thyroid ablation

Fifteen years ago, I was diagnosed with Graves' Disease. It is an autoimmune disease in which the antibodies stimulate the thyroid to overproduce thyroid hormone. I had it on and off for at least 3 years not knowing what was going on but it came and went at least 4 times in that period until I developed "Thyroid Storm" and I showed up in the ER thinking I was having a heart attack. I was treated for a year with the antithyroid drug PTU, which ties up iodine so that thyroid hormone could not be made. It brought my symptoms quickly under control and I would have been happy to keep on taking it.

PTU, to some people, is intensely bitter and one's ability to taste it is genetic. High school biology classes used to have us and our families taste it, along with ABO blood tests, tongue curling abilities, etc so we'd understand simple genetics. Now too many privacy issues come up so I think alot of that is now sadly abandonned. Fortunately I am not a taster. Some lady at my former workplace used these test strips for a demostration she'd take into the middle and high schools. Apparently one's ability to taste this also correlated with how much we crave salt vs sugar and a whole slew of other taste issues.
After a year, my doctor Doogie Howser, cut me off. 50% of the time, the drug causes patients to go into permanent remission but he said this was not happening to me and would not write me another script. The thyroid itself would need to be destroyed as it still was huge. My choices: surgical removal or radioactive iodine ablation. A friend had her thyroid removed due to cancer. The nerves to the larnyx are very close to the thyroid and one was destroyed leaving her vocal cords in the closed position. Aside from losing her speech, she now had to breathe through a hole in her neck for several months until the nerve regenerated. As an added bonus, this same person later had breast cancer though she is fine now.This did not sound like fun. I chose the I-131 which emits beta rays. I really had second thoughts destroying an organ that later I might find out I need. Although the thyroid hormones could be replaced, the thyroid contains C cells that produce calcitonin, which inhibits the Ca release from bones. Were these C cells going to be destroyed also? Will I need them in the future? Nearby are the parathyroid glands. Will they be wiped out also? They also are involved in calcium metabolism.
Do patients who have this done later come done with osteoporosis?No answers and I was given very little time to research this myself as I was running out of drugs. Should have just ordered the drug from Aldrich (major supply house for chemists)and purified it. One of the markers that would be measured as a possible predictor of bone mets is 'parathyroid hormone related protein' (PTHrP) if I were to be on the Zometa study. (The other marker is 'substance n-telopeptide' )They will not share the results of these tests with me or my doctor, which I believe is unethical. Do I even have this protein as I might have damaged parathyroids? Having been hyperthyroid on and off for 3 years alone puts me at risk for osteoporosis. I had myself tested 2 years after menopause when I was not taking hormone replacement and I had the bones of a twenty year old. Same results 3 years later on HRT so I guess this is not an issue. Calcitonin is easy to come by anyway. Parathyroid hormone-not so- but maybe all of mine aren't damaged.

Getting answers is not easy. I haven't completely ruled this study out. It is tempting only because it seemed to prevent mets though in a patient population that is very much unlike myself. On the other hand, drug companies only publish positive results. They are not compelled to publish negative ones though recently there has been some movement in which they would voluntarily share these results with the public. They have to report everything to the FDA before a drug is approved for a given indication but they are not at that stage yet.

The nastiness will probably not hit me until late tonight so I should be good for a nice walk once it warms up. I will go in later for the Neulasta shot. The insurance had billed me $1800 for it last week on top of the $650 I had already paid for my last dose. Medications are supposed to only have $10 co-pays but they somehow managed to consider this a 'medical treatment' instead. The old insurance gave this to me for free. Also they delivered it on a day that the temperature didn't top 10 degrees and I was at the hospital all day. Steve had to stop by to make sure it wasn't freezing on the porch-a major inconvenience and I had fretted about it during my treatment. They dropped the $1800 charge after more phone calls as we've met the deductable for medical treatments. The Asian lady is taking Gabapentin for her neuropathy and says it works. I bet she is a triple negative though I didn't have time to extract this from her. We'll meet again in yoga maybe next week.

My blog format is all jacked up despite me trying to fix it. Will deal with it later.

Tuesday, February 24, 2009

Infusion Seven-Day One

I had a late start today. Although my hemocrit rose, I am still anemic. Worse, my white blood cell count dropped quite a bit but not enough to postpone chemo. I will have the nurse administer the Neulasta tomorrow due to problems that I am having with my insurance. So the Zometa study was explained to me. If I sign up, I only have a 33% chance getting on Zometa. The other two drugs also are bisphosphonates but are orally active so I don't need an infusion. One is Boniva-usually given once a month but they want it taken every day for 3 years. The other is a drug only available in Europe. In any case I would be on the drug for 3 years with a 10 year follow up. The Zometa is an infusion every month for 6 months then every 3 months for 3 years. It has a long list of side effects-bone pain, tough on the kidneys etc. Lots of potential problems for no promised benefit. What made me mad is that they have two markers that MAY predict whether you are more prone to bone mets that they will test you for but they will not give you or your doctor the results as the test isn't absolutely definitive yet. I find this annoying and unethical. Also hidden in the 19 page document is that if you have a side effect that needs treatment, it is your or your insurance 's company responsibility to pay for it. I would have to start while I am on radiation. I am thinking forget this study. One question I have for the cancer world is what is the bone density of the ladies who do get bone mets? More research along with what they really know about those markers. One involves the parathyroid.

While waiting for my infusion, I ran into a lady from my yoga class. She has a similar regimen as I only she has 2 more taxol treatments than I. Her Mees' lines are black, which annoy her so they are covered up with nail polish. Dr. Henry said that Blacks and Asians get black lines across their nails instead of the white lines I have. My yoga buddy is Asian. She was surprised at my long, thick eyelashes (mascara enhanced). Some of my nails have 3 lines now. The infusion was late, long, and uneventful. I did get a foot massage that was very nice. A very early stage estrogen positive lady sat next to me while she got her Zometa infusion. She is thrilled to be on the study. She did not need chemo-breast cancer lite.

I had my nice long walk yesterday. It was even nicer today but I was in the hospital forever and then will go to Naomi's game-Parent night. They played last night handily winning but Naomi played poorly. Not sure if she will start tonight. Marilyn called to see how things were going. Her last Taxol will be Friday but she thinks she might need a transfusion first. The whole chemo has really wiped her out and she does not leave the house. She is flat on her back for 4 days after treatment. She's interested in LiveStrong, which we might do together. She won't have radiation so the timing might not be right unless they let me do LiveStrong during radiation. She was breathless. I guess I am lucky that I still can somewhat function while on chemo even if I do hate it and feel bad.

Naomi and I watched the Conchords together. She got a kick out of the "Same Girl" song as it was a clear (to her at least) spoof of one of her favorite hip hop songs.

Monday, February 23, 2009

Breast Cancer and thyroid disorders

On the TNBC boards, I've noticed many ladies have complained of thyroid disorders but I didn't think much about it as thyroid disorders are so common, at least half of my friends have one and they seem to be cancer-free. However reading further suggests a link. One study took a large group of women, half with newly diagnosed breast cancer and half cancer-free, and measured anti-thyroid antibodies. 45% of the cancer ladies had them compared to 11% of the cancer -free ladies!!! ( Only a few of these women had clinical signs of a thyroid disorder. see also:,,

Thyroid disorders are eight times more common in women, a fact that has always puzzled me as men have thyroids too. This suggests possible female hormone involvement. Thyroid disorders tend to rear their ugly heads during time of great hormonal change. For Graves' Disease (my particular disorder), puberty sometimes brings it on (one of the girls I coached was hit so hard by it, she needed to be hospitalized), pregnancy (it developed for me shortly after Naomi's birth), and menopause. Furthermore, the few men that develop TD (thyroid disorders) often get gynecomastia (man boobs). Hmm. HCG (pregnancy hormone) itself is a mild thyroid stimulator. In conditions that excess HCG is produced (molar pregnancy, choriocarcinoma, hyperememis gravidarum i. e. excess puking), patients have all the signs of hyperthyroidism.

Thyroid disorders are largely autoimmune diseases. (some are caused by pitutary malfunctions but much, much rarer). In patients with disease, there are these 'antithyroid peroxidase antibodies". In Graves' disease, these antibodies stimulate the thyroid to overproduce and the patient becomes hyperthyroid-no fun, trust me on that. The 'cure' is to remove the thyroid, either surgically or by destroying it with radiation (my way), and the patient needs to take replacement hormone. However, these antibodies are still present. Sometimes (50% of the time), they stimulate the eyeball to produce excess fluid and the patient develops bulging eyeballs that are so big, they can't close their eyes (like my soccer player). I was spared that. Other times (much rarer), it attacks the skin to cause thickening and severe itching (a friend of mine had that as her only symptom). Apparently these f***ing antibodies might have a more evil effect that has yet to be clearly elucidated. In Hashimoto's disease, the much more common TD, these same or at least very similar, antibodies cause the thyroid to be destroyed resulting in hypothyroidism-also not fun as I have experienced it too. It seems strange that in one case, these antibodies act as an agonist and in the more common case, act as an antiagonist. Maybe the antibody tests can't distinguish the subtle chemical differences between the two potential antibodies. They definitely have diverse effects. But the fact that these antibodies seem to be floating around in breast cancer patients selectively suggests a role.

Most of the background info given is from the Merck Manual. For background info see:
To be fair, some studies show no link between TD and BC. Dr. Susan Love never even addresses it.

Somewhere buried in all my readings, with which I am not yet finished, is that BC in patients who have thyroid disorders, is much easier to treat and has better outcomes. I will cling to any little shred of positive news.

Enough of my rambling. It is Day 84 of my sentence in chemoprison, 28 days to go but maybe, I don't need to count the last 7 days as hopefully I will feel closer to normal in that time. I dread tomorrow as it is an infusion day and also I feel I will be pressured to make a decision concerning the Zometa. My gut feeling is that I don't want it even if it MIGHT cut down my chances of developing mets. I usually try to run during my good days but the streets are still slippery. I did go for an hour walk and hope to today also. My taste buds are returning to their pre-chemo selves. I drink coffee again. Still wine is yucky-I tried a little.Some of my friends came over to watch the Oscars, which was fun. I was right in most of my predictions except for the short cartoon and Sean Penn. Bball again tonight at the Rat Dome, which was recently renamed the Greenhouse.

To keep myself reasonably sane, I view my present ordeal as six months of hell that I need to get through but then I can be done with it and go on with my life sort of like my broken arm episode of 2007. But then there are reminders that this might now not be just a short, painful chapter in the middle of my life but the beginning of the end. See Tracy's story in "Renee's Bump in the Road" that can be found under blogs I subscribe to. Tracy was diagnosed with Stage 2b TNBC as she was nursing her son 8 years ago in her early thirties. (I am stage 2a-less scary). A year after treatment, it was found in her nodes eventually spreading to her lungs and brain. The various tumors were dealt with by more and more chemo, surgery, and radiation. She had few 'normal periods' of living but seemed always hopeful. For the past 6 months, she has struggled to even breathe due to diffuse tumors throughout her lungs. Friday she died.

Sunday, February 22, 2009

Grapefruit and Prilosec

Naomi during the game the other day compliments of the AA News

I just finished my last yummy red Texas grapefruit thanks to Katy. Grapefruit ingestion must be done cautiously however as it contains a substance that inactivates cytochrome 450, which is responsible for the first pass metabolism of many drugs, especially statins. If the drug isn't metabolized as expected, blood levels of the drug might rise to dangerous levels. In the case of statins, one wants them to be metabolized in the liver, not the muscles in which a dangerous side effect can occur leading to muscle wasting. This came to light about 8 years ago when I was a guinea pig for the company testing the bioavailability of a new formulation of their infamous statin. Suddenly I was advised I could not eat grapefruits and they would pay me $200 extra for the pain of grapefruit deprivation. Fine, any other fruit that you would pay me not to eat? Bananas perhaps? (hate them) Further guinea pig studies tacked on a 'no xanthine' clause. This I found intolerable as I am a xanthine addict-caffeine as my xanthine of choice though the xanthine in chocolate is nice too (not for dogs). (Another reason I refused to be a guinea pig again is that my new company-the one that had swallowed up my nice, old company to grab its statin and then throw the rest away-reported my guinea pig income as 'self-employment'. We had ignorantly treated it as ordinary income and this had serious tax consequences that ended up turning the whole experience into 'negative income' giving me yet another reason to hate our conqueror.)

My round about point is there are consequences to ingesting certain foods and/or supplements that are only now beginning to be understood. I didn't eat the grapefruits until I was sure the Taxol had cleared and on days in which I was not taking the Prilosec-also metabolized by Cytochrome 450. Prilosec was prescribed for the Red Devil's nasty side effect of destroying my stomach lining. It blocks the acid and thus the pain I would have when the acid hits the destroyed stomach lining. The onc said I should keep on taking it but I am taking it only every other day now. Prilosec seems benign but I watching House the other day. True this show is only very loosely based on fact and I haven't yet the time to research this latest scare. A patient develops heart failure due to Brucellosis (an endearment my father had for my brother along with 'you little bastard')-rare in the US as our milk is pasteurized. However this particular patient had been in Italy feasting on the cheeses made from unpasteurized milk. (While in Italy I did the same but they insisted that the long ageing process kills pathogens). Usually the stomach is acidic enough to kill off the Brucellosis organism but in a strange product placement opportunity, the show mentioned that this patient was on Prilosec and therefore his stomach wasn't acidic enough to kill off Brucellosis, and now he was in big time trouble as he needed a heart transplant and the ethics committee thought him too old to waste one on him. House of course saves the day giving him a heart noone else would want as it was riddled with venereal disease. So far all I have found in regards to the evil side of Prilosec is that it interferes with the absorption of some minerals that need to be acidic to work. My work continues but I have lots of other fish to fry-like the role of alcohol, Prem-Pro, hypothyroidism, ibuprofen, etc in my current situation. Another post.

I got a note yesterday from Naomi's counsellor-a situation that made me freeze as I opened the envelope as it is interim time. Naomi insisted her grades are good and they are now monitored daily by her bball coach but once burnt, twice shy.. The grades are good ( a B average-all is relative) but she has not filed clear post-graduation plans yet so I have to come in and deal with that. It is now spring break for most of the Huron River Rats. Lots of the seniors are now on Caribbean Islands-Josh had gone to the Bahamas on his. But for the bball team-work, work, work. Three games next week and practice everyday. Only Saturdays are free.

Finally all of our 1099s are in so we worked on taxes. Steve did ours and I got all the paperwork and accounting together for my parents' separate estates which were finally closed last year. The snow messed up my walk (which would have been a run)but I did some shovelling and then walked where the cars had flattened the snow. Shanna's new place will be right on the water-there is a 38 mile trail there (Harborwalk) that hugs the coast so I will have a scenic place to run or at least walk Oliver.

My Oscar Party tonight. Come when you can .

Saturday, February 21, 2009


So the LiveStrong benefit basketball game between the two major high schools was a success. Thank you so much for coming out to cheer Naomi and her teammates on even though some of you really don't appreciate hs athletics and the game started very late. It meant so much to me. Throughout the day, Steve went to Coach Steve to get more t-shirts, who conveniently works near our house. I went early to sell raffle tickets with Darlene, Sierra's grandmom (who is just 2 years older than me) climbing up and down the stands. In all $750 of tickets were sold. Some people donated their tickets to me, which was very sweet even though as it turned out, they weren't winning tickets. The prizes were 6 extremely elaborate gift baskets stuffed with at least $100 worth of goodies. I met up with the LiveStrong people who urged me to sign up right away. LiveStrong is a nationwide program started by Lance Armstrong to deal with the aftermath of cancer. It's a 12 week program administered here by the Y to rebuild one's muscles. Also I met up with Coach Crystal (Pioneer's varsity coach), a cancer survivor, who was hand-painting brooms for part of the raffle-she's an art teacher. We had a nice chat. Lots of positive vibes all around.

Naomi was antsy and cranky before the game. On top of it all, she had cramps. She felt there was too much pressure on her. I didn't tell her that Josh and Julia were going to be there too. She really hates screwing up in front of him. Josh helped her game out quite a bit growing up. He was a very good player himself, much older and bigger than Naomi, and still wouldn't give her a break. She had to learn to shoot around him. He was disappointed that she wasn't a 'little brother' but athletically, she was much more co-ordinated than most of his friends when they were the same age. Until her peers hit puberty, she held her own against the boys her age.

Two of Huron's posts are injured, although Jasmine will be able to play next week, leaving just Naomi and Sierra. Sierra has been on varsity only this year and doesn't have enough experience with all the complicated plays the team runs. JV teams usually have 2 or 3 plays to run and they are fairly simple.
Kelcie, the youngest player, was getting very good but she has some scary medical issues now to deal with and is out for the season . Naomi ended up playing most of the game. Compared to most teams, Huron plays an extremely fast paced game. They have a deep bench and will tire out any team who doesn't. Naomi was subbed out briefly but then Pioneer would start to catch up and Naomi had to go back in. She played very well defensively and even had a fast break on offense. Coach Steve was quite pleased with her. Pioneer played its best game ever but it lacks the stars such as Tyler and Devonyea, who are impossible to stop. They have 3 games next week to finish up the season but all against 'easy' teams. Then Districts start and they want to go far.

Naomi's chief objection to the newspaper article was that it said my age, which for some reason is a source of acute embarassment for her. Nevermind that I have been much more physically active than the young moms of her peers running around the soccer fields coaching when she was younger and doing our cross state bike rides.

I woke up early yesterday to try to deal with the mess our house has become so my cousin wouldn't think I am a total slob. I was able to get a long walk in too as today we are to get a big storm. It is now starting 3 hours late-I should go out right now but don't feel like it. My cousin Donna finally came with a very nice gift basket full of thoughtful goodies (so I am not gift basket deprived) including a cute outfit for my theoretical granddaughter who Shanna may be carrying right now or maybe Julia will carry (after she conceives) later: 75% chance of having a little girl in the next 15 months from my reckoning. Donna and I went out for lunch and had a good time discussing this and that. My mom had two sisters that very much looked like her (there was another sister who died before she was born). Donna very much looks like her mom or my mom, who I don't look like at all. At the end of the night, I was very tired.

J&J want to drive to Grand Rapids today to visit Julia's uncle. Trying to talk them out of that-bad storm.

Shanna's family will move to a more affordable and larger place in Dorchester in the next month. I'll miss cute Arlington and its Minuteman trail.

Thursday, February 19, 2009

My Press

The Ann Arbor News called last night for an interview concerning the up-coming bball game to benefit LiveStrong. I was the sole Huron representative ( though I didn't identify myself in the article except as an ex-runner who has a daughter on the Huron Varsity team. I am out of T-shirts but they can be bought at the door.
Kept waiting for the rain to abate yesterday but I finally went out with umbrella in hand although at one point, a sudden wind gust turned it inside out. The rain had stopped by then. Very cold and windy today. I did go to yoga today, which was much easier when I am not in pain or on opiates. Still I am very inflexible. Today's instructor came from Brighton Beach, Brooklyn where my husband is from. My wig kept falling off during the poses. Most of the people there have breast cancer except for a lady with lung cancer. There is a man too but I don't know his story.

Today's plans include watching more Foyle's War and then doing something with one of the moms. I feel OK but I am not looking forward to next week when the poisoning resumes.

Wednesday, February 18, 2009

Woe to those who are my mother

This cryptic statement was left by a Turkish young man who happens to have my same last name (which is German derived Jewish) on my Facebook page. I had it translated from the Turkish and the title is what was spit out. Not sure why this young man wanted to be my friend. Naomi had accepted his friend request thinking it was her page that was open and she is always happy to get a new friend (with one huge notable exception-she is always careful to exclude a certain someone). I am on Facebook mainly to get Oliver videos.

For my cancer gals, check out All sorts of free retreats for us. Thanks Rural Woman.

Taxol is releasing its hold on me and I was able to walk in the relative warmth with one of the moms in Gallup Park yesterday for more than an hour. Also, extra bonus, I was able to sleep through the night.

Bball in Dexter last night. Josh didn't come (he lives in Dexter) but he will come to the cancer benefit game this Friday along with some of the moms. Two of our posts were injured. On any other team and even on this team for the past 2 years, Naomi would be a forward, not a post as she is too small (5'10' vs over 6 feet) but this year, he is playing 4 guards and one post-no forwards so no clear role for Naomi unless she plays post. Coach Steve started with no posts and it was a disaster until he put Naomi in. He finally was happy with her and she played the rest of the game. They handily won. Naomi had to match up with a girl she especially dislikes. Apparently the feeling is mutual. Naomi is now covered with fresh bruises and claw marks but she doesn't care as she shut this girl down. Unless she messes up in practice, she should be good to go for the Pioneer game. She does well against their center.

Tuesday, February 17, 2009

Beriberi and me

Beriberi is characterized by peripheral neuropathy due to thiamine (Vitamin B1) deficiency. As its symptoms are so similar to the taxol side effects, some people suggest injesting large amounts of B complex vitamins while taking taxol. It is not clear if this is helpful. At anyrate, Vit. B deficiencies are very rare in the US and it is hard to believe that it would develop in 2 days-the time it took for the taxol side effects to rear their ugly heads. Sometimes it is dangerous to take large amount of vitamins while undergoing chemo. One example would be those on methotrexate used sometimes against breast cancer. Methotrexate works by depleting the folic acid that fast growing cells (e.g. cancer cells) are so dependent on. Now if you are ingesting folic acid, a common component of multivitamins, you are subverting its action.

Vitamin D deficiency however is not so rare and seems to be linked to breast cancer. (see: Fortified milk is a principal source of Vit. D. However, one only ingests the pro-vitamin. For Vitamin D to form, there must be some exposure to UV light. Vitamin D deficiencies are common even in the tropics when women are forced to cover their bodies completely. Not clear if their breast cancer numbers are higher (negated maybe by high birthrates and short life spans) but they definitely have a higher incidence of rickets. I probably have over-exposed myself to UV light but I don't like milk. Hopefully my yogurt and cheese consumption kept my Vit. D levels high. My bones were dense.

Enough of my lectures. I am just trying to sort out what factors will be important to my survival once I am out of chemo in 34 days. The side effects of my last poisoning are abating and I was able to walk for more than an hour in the sunshine yesterday. Not sure how much UV light my skin was able to absorb as I am so cold intolerant. I had to return to get a warmer hat even though it was 30 deg. My hair in the past kept me warm unless it was below 20. Also my eyes and nose are no longer watering. That must have been due to the Red Devil. I was glad to have the energy to walk. I also have started using handweights.

This Friday, the two local teams Pioneer and Huron play each other at Pioneer. They are raising money for LiveStrong, the organization Lance Armstrong started to help mend those out of treatment. Locally the program is at the Y. You are assigned a personal trainer for 8 weeks who helps you rebuild what was lost during treatment. Two of the Pioneer coaches are breast cancer survivors. Presumably the local newspaper will interview me as representing Huron. I have purchased alot of these t-shirts. So if any of my local friends want to come and see Naomi play and help benefit LiveStrong, I will give them a t-shirt which they have to wear to get in free. So it will be free for you.

A friend and I will go for a walk later this afternoon. Hopefully more ice will melt. Some of my neighbors didn't do their walks and it was slippery. The city did not clear the bikepath, which they generally do so my favorite option was out.

Monday, February 16, 2009

Neuropathic Pain

As said before, I've spent many years as a medicinal chemist. At the most basic level, most of my job consisted of me being a glorified cook e.g. putting molecules together to form new molecules to be tested as possible drugs. A lot of my time would be spent trying to purify what I made. We would have regular project meetings consisting of us chemists, biochemists, pharmacologists, metabolism experts and later toxicologists to discuss our findings. This work would be considered 'preclinical' and our whole purpose would be to identify an agent and several back-ups to move up to the next level. We always had a target approach to a given disease like 'serotonin re-uptake-inhibitors for the treatment of depression". That isn't something that I worked on, just a very common project many drug companies had. We were interested in how a drug worked at the cellular level. We were very far removed from the actual patient that would take our potential drug although that was the whole purpose of our job. We would attend lectures from clinicians occasionally about how the disease impacts the patient. Of course number of patients, what our market share would be, etc would be very important to the company (any company). Malaria for instance, affects more patients world-wide than any other disease but sadly not much of a market as these patients on the whole, can not pay for drugs. Hyperlipidemia however is widespread among people who could pay and is a chronic condition so the patients would have to take the drug for the rest of their lives so this is a 'good' target.

One of the areas I did work on targeted neuropathic pain. Basically, as I was told, there are two categories of pain: nociceptive pain which they categorize as 'good' pain and neuropathic pain
'bad pain'. You put your hand on a hot object and experience nociceptive pain. Your decayed tooth develops an abscess and inflames a near-by nerve. More nociceptive pain. This pain serves a purpose and can be readily eradicated (most of the time) by several classes of drugs. Neuropathic pain serves no purpose and is thought to due to damage to the nerve itself. It is also very difficult to treat. An example of neuropathic pain is 'phantom limb syndrome'. The patient still feels intense pain in his amputated leg even though the limb is gone. It is due to damage of the nerve itself. The most common form of neuropathic pain is thought to be a major component of fibromyalgia, a disease one of my cousins has and it greatly complicates and diminishes the quality of her life. It is poorly misunderstood and since it strikes mainly women, some clinicians are skeptical about its existence. Pain in general is hard to prove. If you have a broken arm or an abscessed tooth, they probably will believe that you have pain. But if there is no damage that they can see, who can prove you have pain or how severe it is as it is so subjective. I had severe cramps as a teenager and was very distressed to read at the time that this was a figment of my imagination-the medical thinking of the 60s. No knowledge of prostaglandins then. If it could not be explained, it did not exist.

Of the many sources of neuropathic pain, I never heard of Taxol being one of them during my time on the project, but now as a patient, indeed this is happening. Somehow Taxol is messing with my nerves and my perception of pain. My feet feel as I've been walking for miles (and in the past I've walked and/or ran for miles and have not felt this sore) but I have barely moved in the last few days. Nociceptive agents are useless. It is fortunately lessening and I have only two more poisonings to go. If the damage becomes permanent, I know what drugs to ask for. I was shocked that these drugs have not been offered to my cousin.

Josh came over yesterday morning. In return of us caring for Sunny, his hyperactive German shepherd, he will stay with Naomi the next week so that is a relief. It is a toss-up which job is more difficult. Naomi was in a good mood as she did meet up with Dontae ( I should have known that he wasn't named after the Italian poet) and he bought her lots of presents. She insisted he was there only for dinner as her friends were having a 'girls night out'.

I met up with the 'moms' for our brunch. I unfortunately selected a place that had a very long line. It was nice catching up with their travels. Sometimes though, it makes me sad as I feel some of them are uncomfortable dealing with me and they actually turn away from me when they speak. I know they don't mean to and I am just being hypersensitive but it is does happen in groups. I try not to be morbid so they won't be uncomfortable.

I then went to see Naomi play in a scrimmage against the team that won States (Grosse Pointe North) in the Class A division (ours). They did fine and it seemed Naomi was getting her game back. She has the day off today (records day-no end of holidays for these kids) No break from bball though. Generally only Saturday is free from that.

Steve and I watched more Foyle's War (Thank-you yet again Teri). Generally what I like and what he likes do not intersect but he seems to appreciate the historical aspects of the show. The last episode focused around the Nazi sympathizers in England during WWII. Foyle is a police detective solving murder cases but there are plenty of complications amidst a historic backdrop.

Sunday, February 15, 2009

Valentine's Day

I received several surprises yesterday. One a special package from Texas from  my old neighbor, who sent a Texas care package complete with Texas grapefruits, pecans , pralines and Lone Star cookies. Also a very cute homemade card from Lesa in MA who makes handmade cards for cancer patients in treatment. One friend gave me a nice handmade hat and sweater and Steve flowers.

I didn't leave the house as I am still tired and sore though less so. Watched one of Teri's movies with Steve-very good (Foyle's War). We had spent some time in that part of England.

Later my friend and I watched Waitress, which was cute.

Trying to organize all the moms now to go out to brunch.

Day 76 of chemoland. Such a long, long time.

Saturday, February 14, 2009

Taxing taxol

I am hoping that the worst in over for this cycle. Although I didn't experience the severe pain as the first cycle, it still has not been fun. I have slight numbness and tingling in my fingers (neuropathy) and my muscles are still stiff. I won't take the vicodin during the day as it makes me too dizzy and puky. There is 4 inches of snow on the ground suddenly. I don't think this was forecasted. So much for my walk.

I met up with my ex-coworkers A, B and K yesterday for Happy Hour. No booze for me though the gin and tonic seemed tempting. K finally dumped her manic-depressive, pain-in -the ass husband and is much happier with a new career. B was told he had lung cancer the year we all were fired. He had a cyst in his mouth but somehow they accidentally x-rayed his chest instead of his mouth and found his tumor. He didn't smoke and had no symptoms. It had spread to 2 nodes. His prognosis is slightly worse than mine but he has been cancer free for 18 months now. We compared chemos. Of course his surgery was much more debilitating than mine (lobe removal). We had fun gossiping about old times.

Later I went to Naomi's game. It was depressing in many ways and I felt sick sitting there for so long. She has been playing so badly. She got more time as a sophomore. There was a team event after the game but she chose to go out with her friend instead. Hopefully she was not meeting up with the infamous Dontae or is it Dante. At least she seems to be doing well in school.

I finally was able to get some sleep interrupted by Naomi's alarm going off at 5. I' ve been sleeping in Josh's old room-a memorial to his past athletic achievements with all his trophies and posters. I had painted stars all over his ceiling that glow at night left over from when he was a little boy. His mattress sucks and it is very cold in there. I am so restless at night, I feel bad disturbing Steve but I get mad that I have to stay in the uncomfortable room when I feel so bad.

Friday, February 13, 2009

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.

Thursday, February 12, 2009

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.

Wednesday, February 11, 2009


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 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.

Tuesday, February 10, 2009

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.

Monday, February 9, 2009

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.

Sunday, February 8, 2009

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.

Saturday, February 7, 2009

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:

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.

Friday, February 6, 2009

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.

Thursday, February 5, 2009

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!

Wednesday, February 4, 2009

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...

Tuesday, February 3, 2009

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
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.

Monday, February 2, 2009


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. 

Sunday, February 1, 2009

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.


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