Our last fling before chemoland

We had decided that this weekend was the best time to go on a minivacation before I retreat into chemoland. We woke up early to begin the day. I took Naomi to her bball tournament and was able to watch one game while Steve was home making arrangements. Fortunately Saturday night, the team had a sleepover so I didn't have to worry about Naomi 'hooking up' with Dante.. Naomi hates asking people for rides as except for the sophomore Kelcie, they all can drive. The two new girls are unbelievable quick-they beat everyone easily including teams we've had problems with in the past.
I then picked up Steve and we went to Armada for my Aunt Ginny's husband's memorial. Mel had 3 kids by his first wife. As she had died in childbirth, he raised the kids himself and married my aunt in 1971. These kids turned into 12 grandkids who turned into 18 great-grandkids, most seemed to be there. Alot of them seemed to be little boys under 6 who have never heard the word no. While various relatives were giving tributes to Mel, these kids ran around in a corner screaming as if they were on a playground. Not once was it suggested that these kids show a little respect. It was good to see my cousins and their kids. One of my cousin's kids is dating a chemistry professor from England that once worked in Sandwich where Steve was temporarily assigned. Another is an actress living in LA who had starred in this gay supernatural soap opera (Dante's Cove) on the LOGO network. She played a lesbian vampire. Between acting jobs, she paints. She is unbelievably pretty and sweet. Another just joined the military and is currently in Maine pretending to be a POW in the snow.
My Uncle Carl brought pictures. He gave me a picture of Sugar and me when I was about 12. My mother's cousin Walter (he and his wife were there also) had a dairy farm in Lapeer I used to love to go to. Not so much because of all the cows but because of all the cats and the palomino horse Sugar. To get to ride a horse for free was quite a thrill for me. They still have all the cows but no longer milk them. They will get to live out their lives. Walt's wife Virginia won't eat beef and is fond of each of the cows. Lots of active people pushing ninety but looking much younger. Hopefully I will get to live as long as them but chances are getting slimmer here. Another picture was of my Uncle Austin. I never saw a picture of him before. He had killed himself when he was in his early 20s suffering from various demons. I always pictured him looking just like my mom but he looked nothing like her. He was blonde, blue-eyed and extremely handsome. All her other siblings (except Carl-he is blonde and blue-eyed) are dark-haired. My Aunt Ginny looks so much like my mom I gasp every time I see her. My mom died last year-she got the short end of the stick in so many ways.
Steve arranged for us to stay in a B&B in Holly. As the crow flies, it was 40 miles due west of Armada but there were plenty of obstacles in the way. It took forever to get there. Holly is home of Carrie Nation-founder of the temperance movement chopping down bars with her axe. The B&B was very cute and nicely decorated. It's sometimes almost a burden trying to have fun when it might be your last chance. I warned him how hard it was going to be during the next 4 months but he said he will take care of everything-all I have to do is sleep.
Breakfast was very good-a German apple pancake and an artichoke souffle. The hosts were talkative and interesting. Business is bad as it is in all SE. Michigan. There was a prediction of a snowstorm so we hurried home. I got my last run in before the snow started. We then went out to lunch with Josh. The snow was really coming down with freezing rain thrown into the mix. We went to pick up Naomi from her sleep-over that turned out to be in this mansion in Saline (not sure how the girl gets to play for Huron). She had a great time with her teammates watching movies all night. With the roads being so bad, fetching Naomi took more than an hour. I've got all my Sunday papers to catch-up with now.

If you think breast cancer is a gift, you can't come to my birthday party..

The above is from a book Steve bought me, five lessons I didn't learn from breast cancer..in which the author, now a breast cancer survivor recounts her experiences in cancerland and tackles the myths surrounding the disease. I am not finished yet but so far a good read. But one of the issues she tackles is the idea that cancer is a gift because it gives you true insight into what is important. Her take on that, not so much. Also she questions the attitude police constantly reminding you that you need a good attitude or you are not going to beat this, death by bad attitude. As she says, it isn't like you make the decision to think..screw it. I'm going to be depressed and negative until this thing is over. Of course, most of the time people don't criticize you (most of the time) when you seem to be in self-pity land. They do the positive reinforcement trick "Oh, you have just the right attitude, you'll beat this for sure." when you seem in a relatively good mood. Same message. And studies show that attitude really doesn't matter in survival despite Norman Cousins curing his fatal disease by thinking good thoughts. Still nobody wants to be around a gloomy gus and the right attitude people might take care of themselves better.

I seem to be insured. Now telling various health providers that I have a new policy number will be a pain. My prescriptions have the old number on it. And in January, we still have to figure out what insurance to get.
Naomi has an all day bball tournament today. Knock wood, she is healthy although she looks like an abused child with a black eye and numerous bruises. All of this from her own teammates. The coach teaches them to be very aggressive. They are now officially ranked in the top 25 teams in Michigan. They will do very well once the season starts this week. Hopefully I can see a few games..

We will see the first one this morning then off 75 miles to Armada where there is a memorial for my uncle. Then Steve and I will stay..I don't know where.hopefully he has arranged this...for our night out before I go into chemoland.

A good running day yesterday. Later one of the moms came over and we watched Respiro, one of the Italian films in my cinema class last summer. In literature, there is prose and poetry. Same with cinema. Some films are prose-they tell a story but some films are poetry. Respiro is a prime example of poetry in film. Very lyrical and beautiful.

Got to start the day.

Thanksgiving

An easy Thanksgiving for me as I didn't need to cook the whole meal. Naomi offered to make the pie and the ambrosia too as her new boyfriend Dante wants her to be able to cook if they have a chance at a future. Ha. These boyfriends of hers last about a month. I was nervous with her slicing up all the apples but she did all right. Even the pie crust turned out well-thin, even and flaky. I should have her do more of the cooking especially as I go into chemoland but she needs to be more independent.

A relatively warm sunny day so I could run easily.

So Julia made tons of food-very good stuff too. She put alot of effort into everything though Josh was probably disappointed that she messed around with the stuffing recipe.

We let Naomi drive back even though it was dusk and we were going right through deer central. Sure enough some deer started to jump in front of her but she wasn't going very fast and was able to stop in time.

Are you a survivor or a victim?

While I was in the cancer library at UM the other day, I was reading some essay about the difference between being a cancer survivor and a cancer victim. Basically it boils down to attitude: the difference between focusing on the 75% chance of survival vs focusing on the 25% chance of death. As said before, I am a little uncomfortable with the idea that if I just think good thoughts, all will be right in the world. And if things don't go well, will people sadly shake their heads if she only had the right attitude.

Running does put me in a better mood. At least the streets had a clear path though our mailman slipped somewhere on our street's sidewalk needing an ambulance to get him up this morning.
We do have an exercise bike in our lower level-I guess I can do that if running is impossible during my long stay in chemoland. I will miss the feeling I get after running-that I actually accomplished something.

My neighbor Katy finally left this afternoon after numerous false starts over the past 2 years. She brought a cute gift over for Oliver. Hope all is well in Texas Katy.

No school today though Naomi is there anyway for practice. No rest for them. After sitting out a few days, she has finally recovered enough to practice.

I have given up with the cold cap idea to save my hair-the logistics of getting the supplies are too overwhelming and there is no guarantee it will work. I will be very sad the day my hair falls out. I can't even get myself to go for the pre-fallout pixie cut (I will look just awful with really short hair-or bald)

Insurance Hell

The little rascal in the box will be 10 months tomorrow.

Boring, gloomy day. Too slippery to run. When my company let me go last year, they gave me a year's worth of health insurance which expires this Thursday. I could then theoretically get retiree health insurance from them but it will be a completely different plan. There are 2 choices and it is like pulling teeth to get any details about them. I've called them 4 times with different answers each time. No info on how to sign up. They keep promising that they are mailing stuff but it never comes. Now I write down the names of everyone I talk to. Of course this whole call center is out-sourced with poorly trained people. My husband was let go in January of this year so our new tact was to get on his insurance-at least for the next 6 weeks. After more than an hour on the phone and many conflicting answers, it was decided to let my insurance run out and then on Friday morning he is to call and put me on as his spouse and I will be retroactively covered. Their computer would blow up if it looked like I was getting 'double coverage.'Of course what I am afraid of is that Steve will call Friday and they will change their mind and say, Too bad. She dropped her coverage and we don't have to give her anything now. The timing of this sucks so much as chemo begins next week. I am so full of anxiety as it is and this has made things way worse.

I've been reading more TNBC stories-the worse, a node negative woman named Shawn was dead from a brain tumor before she even finished chemo-6 months from diagnosis to death.

And I messed up my stat counter trying to block my own cookies. It still works-not as well though and very hard to access my own information. So I got a visitor from Kenya the other day. Have several visitors from Canada-some specifically from Hamilton, Ontario where many people from Gagliano emigrated to to get jobs-they come back to Gagliano in the summer. I hope I didn't offend any of them. Also someone from Korea and several Brits.

MUGA

Oliver wearing the dinosaur hat I got for him while he was here. Previous record for it staying on his head before him ripping it off-about one second. Somehow he has become more tolerant of it though it looks like his right arm is going up for it.

Yesterday I went for a walk up in Kensington with Jan. A lot more snow there so things were slippery. The chickadees enjoyed the walnuts from my hand but their winter companions, the downy woodpeckers, titmice and nut hatches were less trusting.

I managed to get a run in this morning before the big snow which is now melting. Even though it was warmer than yesterday, the high humidity made it feel cooler. I finished right in time-it started sleeting as I was cooling down. There was a spin-out accident in front of us as we went to the hospital. First I needed a series of blood tests to see if I am healthy enough for chemo, check my thyroid levels which maybe high, and my FSH levels, which is a part of the chemobrain study to see if my chemobrain can be due to menopause. I had an hour break before the MUGA so I went to their cancer education center. I was surprised to see it being manned by a former colleague Ellen. She was one of the very promising Phds hired in the 80s to put Parke-Davis (before Kizer bought us) on the map research wise. But I always liked her even going cross-country skiing with her in the early years. She gave me lots of literature-including the Susan Love Book (which I didn't take but it would have been nice to know that I could get it for free) and can do research on any cancer related issue. She was a scientist in the company's cancer program.
The MUGA test measures my heart's injection volume, an indication of heart function. They do this for everyone faced with taking the red devil Adriamycin. It involved me lying still for 45 minutes as they injected a radioactive tracer into me and it scanned my heart. I saw the images-not too interesting. I assume that my heart is in good shape as I can run alright and recover very quickly. Hopefully the red devil won't destroy my heart.

When I was checking in, a clerk said how much she liked my hair. Instead of being a reasonable person and just saying 'thank you', I had to say something pithy like-well it will all be gone in 3 weeks. When will I learn to be a 'good' cancer patient.

Still no info on my new insurance as promised. My current insurance expires Thursday though I paid for the whole month. If the stuff doesn't come in the mail tomorrow, I will have to make yet another series of phone calls. Did I say how much I hate the drug company that rhymes with Kaiser today?

The Mom's group

I stopped by Brenda's on the way to Jo's in Chelsea. For the last few times I've been there, there have been a few deer in the yard cautiously eyeing me and then bolting if I make a sudden move. Have to be very careful driving around there as the deer are especially crazy during 'the rut'. Her sister was there along with her niece-Naomi's age, her son and his wife and the 3 grandkids. Matthew is now 6 weeks but very tiny. He finally opened his eyes so that I could see them. Naomi's niece loved 'Twilight' both the book and the movie. Naomi was especially disappointed in the Bella character as she wasn't what she pictured. Of course I didn't think Keira Knightley deserved to be Elizabeth in the remake of "Pride and Prejudice"-my Elizabeth would never inanely giggle and the Darcy character paled in comparison to Colin Firth's portrayal-the real Darcy. But I am glad that now Naomi is capable of visualizing how a character should be.
On to Jo's. When I am in the car alone for any length of time, I have my Italian tapes on so I can remember at least how it sounds and some of the vocabulary. If I survive this mess, I definitely would like to go back to Italy. Deb hosted our dinner even though it was at Jo's bringing all her Asian dinnerware and accessories. Cute little soy sauce containers shaped like various animals. She made a variety of sushi and had lots of little Japanese yummies. Jo made Mojitos-not very Japanese but way tastier than sake. Jo's boyfriend Jim had his 2nd set of twin niece and nephews. The first set is only 18 months plus there is a single 3 year old. So 5 babies. Must be fun strapping them all in their carseats. Jo has her own set of grand-niece twins she is visiting today. So per usual, we covered a wide variety of subjects-favorite books-dysfunctional childhoods-Jo lived the Oprah book of childhoods-our lives intersecting for a brief time in Southfield when our best friends were sisters but I don't remember her. She is 3 years younger. But what doesn't kill you, makes you strong and Jo is a survivor. She will go to Kenya for a church mission in a couple of months, then go on a safari. Deb has her own trips planned-though all on this continent and I will be in chemoland.
I go home to troubled dreams. In some dreams I am me but then I am outside watching myself. I think I am surviving this by not thinking it is real what is happening to me. When I go in for a procedure, they always ask me why I am there and what will be done to me and I have to repeat for the umpteenth time that I have cancer of the right breast and am here today to have the tumor removed. This is to make sure that I am not Jane Doe with the gallstones that need to be removed.
Before I ran my first marathon, I was warned about the mythical 'wall' I would hit at the 20 mile mark. I would say to myself-bring it on-let's see how hard it is. I didn't hit it physically but sometimes there was a huge mental effort to keep going. Of course-no one put a gun to my head to run and I could always stop and catch a ride to the finish. I would have hated myself. But the whole thing lasted less than 4 hours and only maybe an hour or less of talking myself into keeping going. But now the stakes are much higher than mere bragging rights and there is no ride to the finish. Also 4 months of chemo land. Maybe I can just sleep through the whole thing.

A record cold today-8 degrees. Fortunately it was sunny and quickly climbed to the 20s so I could run on dry pavement. Tomorrow it will snow and I won't have much time between all my tests. Shanna called. Cute Oliver is doing fine and now can clap hands making noise on command. While he was here, he would clap with his fists closed and miss hitting his other hand half the time. Apparently clapping hands is a complicated motor skill. I will see him in less than a month so that is one bright light.

Run, run, run..

One of my blogger friends (Renee) started her blog with music titles for each entry. Run, Run, Run is an old Who song. Although cold today (22), it was sunny and windless so I went for a record long run (for the past year at least- 5.5 miles) Never mind this used to be a short run but I felt good. Before I went, we got flu shots at my primary care office. He has yet to say anything about my cancer even though everything is sent to him. I guess he is busy.

Naomi went to see the long-awaited "Twilight' last night. She said that it sucked. Up to this year, she has never read a book for pleasure. She has a sizable learning disability-'language processing disorder' is the official title. She seems to have an inability to make inferences at least with words. On the other hand, one time she was playing a game with some of us adults in which you have to act out a phrase and she was able to do this better than anyone-both guessing and acting-of course she was the only one who was alcohol-free. But she hasn't put down her Twilight and the other 3 books in the series.

Chemo Brain

So I spent 2.5 hours on campus as part of the chemo brain study. I spent an hour alone inside of the MRI machine. Even though I had earplugs in, the constant jack-hammer sound was unnerving plus I could not move the whole time except to answer questions by pressing buttons with my fingers. They fitted me with goggles which had the questions on it. They would flash-emphasis on flash, 4 letters then another letter and you had to quickly indicate if the last letter was one of the original 4. No correcting for mistakes. In the part of the brain you are using, more oxygen is consumed and this is recorded. I did get to see my brain-no tumors that I could see but they warned me that this was not a diagnostic MRI only a 'functional' MRI. My brain did not look very symmetrical-lots more folds on one side vs the other. They gave me additional tests outside of the fMRI. One had 5 little arrows on the screen and you had to quickly indicate which way the middle arrow was pointing. I got eye strain from that one as I have 'blended' glasses and the reading portion is the bottom of my glasses. I said these arrows are way too small for those over 40. Another test was repeating digits. First forwards and backwards. I was good until I needed to repeat 7 digit numbers backwards. We will see what chemobrain actually does.

Trying to talk myself into a run. Very windy out there.

Tomorrow is our 'mother's group'-the last one I will be able to go to for a while. Sadly 2 of the moms can't make it-one has her sister flying in and the other to see her boyfriend that she can only see on weekends. Very hard these days to get us all together.

Issues

Still trying to straighten out my insurance. I was on the phone for an hour with the HR people that the company has outsourced to some sweatshop in New Hampshire. Each time a different answer. I have to switch over to 'retirement' insurance as my current insurance expires next week but all the promised information that supposedly will be sent to me was unhelpful. I got a bill for the COBRA insurance and another bill for the same insurance if I was allowed to continue it. The people told me yesterday that I cannot keep the same insurance (before they said I could), unless I do COBRA. The details on the new insurance are extremely sketchy. Allegedly more stuff is coming in the mail. To say that this is a burden while I am dealing with a life threatening situation is an understatement. Do I skip treatment? Do I try to get on Steve's insurance which will expire in January? It is all so annoying.

I do my chemobrain study tomorrow.

Naomi is injured again-this time her knee. When she dove for the ball, her 200 lb teammate jumped on top of her. She spent a few hours in the ice tank yesterday to prevent swelling.

I did run. Still below freezing but the ground was dry. I tried to run perpendicular to the wind.

It doesn't look like the auto industry will get a bailout. If our neck of the woods isn't suffering enough..

Later I went to Brenda's for dinner. Very nice company and food.

Saving my hair

How vain can I be? My friend Nancy said that Beaumont Hospital gives scalp coolers to its chemo patients. You wear it while you are getting chemo and an hour or two afterwards and it's 75% effective in preventing hair loss even with Adriamycin. They presumably rent them out to their non-patients but I see nothing on their website. I did look this up and it seems to be valid. If I don't make a trip out to Royal Oak, I suppose I could construct something.

The last few years seemed to have aged me. Alot of it has to do with weight gain. I had gained 10- 15 lbs during my forties but things have snowballed in my fifties especially last year with the broken arm. To be fat and bald just will be too depressing aside from all the other crap I will experience. The Wall Street Journal had an article yesterday on 'nocebos', the evil twin of placebo. Basically if you tell a patient of negative side effects, they will experience them in greater frequency than if you didn't tell them. About 15 years ago a truck nearby spilled about a quart of Drano, which for the record, is odorless and non-volatile. It was reported as a 'chemical spill' and several people from up to a mile away were hospitalized from the 'fumes'. Tightening of their chests and difficulty breathing were the main complaints. I am trying very hard to immunize myself from this 'nocebo' effect.

It was very cold yesterday and I didn't run though the roads were clear. Nancy, one of my roommates from my Italian stay, came over with her picture album. She liked to take pictures of the people whereas I concentrated on the scenery. We had a good time remembering our experiences. I seem to already have chemobrain as I couldn't remember for the life of me this town we went to for its winery. It finally occurred to me in the middle of the night-Vittorito. I had loved saying its name-I can even roll the 'r' as its letter combinations put my tongue in the right place. (I seem to have especially poor tongue control and a poor memory for sounds-I had numerous speech defects as a kid-some of which persist today. Worse it seems to be genetic as Josh needed speech therapy for as it turned out, poor tongue control despite his superior control of every other muscle. Naomi, despite her other cognitive weaknesses, is an expert mimic and even corrects my Italian pronunciation) I digress, per usual.

We then went to Silvio's on campus. Silvio is from the Abruzzo region, Chieti, which is much closer to the Adriatic than we were. On Tuesdays, he bakes Pugliese bread. As Nancy's relatives are from Puglia, she was thrilled. They featured a soup-dinderlion and bean. Don't you mean danderlion? No dinderlion-some sort of bitter green. They let us taste. It was good. The place is covered with posters from the Abruzzo region-including a poster of Sulmona, our favorite city. Everything is organic-a term I hate because it means something a whole lot different to a chemist. But they do have interesting food there-truffle pizza, for example, even though the place is usually too hot to tolerate and is sort of divey looking.

The chemobrain study is back on. The MRI had broken down and I thought the chance of them fitting me in with the now pent-up demand would be slim.

Right now, the roads are covered with a fine dusting of ice crystals. I am waiting for this to melt.

New Name?

I visited one of my my visitor's sites, Kairol. She was first diagnosed with neck cancer in her twenties and has since written a book on young adults dealing with cancers. A lot of them did not have health insurance. This drug that I will need to take to stimulate my bone marrow into producing the white blood cells that will be destroyed is $6000/dose and I need 4 doses for the AC part. Not sure if I need it for the Taxol regime. Kizer still hasn't sent me info on the 'retirement' insurance that needs to start next month despite my nagging. Oh well. I can still pay for COBRA. But aside from there many tribulations of having cancer so young, they are much more cleverer than I in naming their blogs. My favorites: Miss Melanoma, Chemopolooza, and the Adventures of Baldylocks. If I get an epiphany before chemobrain sets in, my lamely named blog will be retitled.

Naomi was cleared by her doctor to play so back to 3 hour practice sessions for her.

I was able to run yesterday with large, fluffy snowflakes falling on me. I felt good. Two more weeks of running pleasure though I will try to run just a little. I did find one young mom with breast cancer who was able to run a little during chemo but she had been recently running marathons before diagnosis.

Steve and I went out for bento box lunches on campus. Later Josh stopped by afterwork to possibly deal with his resume. He is considered to be 'key' talent despite his age at his company, but if he is let go,  he will have to leave the state. For you out-of-staters, it is amazing how everything is tied to the auto industry here in SE Michigan-businesses failing left and right. Yet somehow the auto execs still get their extremely fat bonuses. Something is so terribly wrong with that. Kizer is no different, if not worse. Under the last CEO's watch, the value of the company dropped in half yet he was given a record golden parachute when they kicked him out while telling the minions that they pay for performance. He should pay back Kizer. Of course the next CEO thought it would be a good idea to wipe the Ann Arbor site off the map even though in the past, their big sellers came from there..and so here we are..unemployed. But both Steve and I got our little parachutes and live relatively simply with no mortgage payments and I certainly would not want to be working while on chemo. Some of my blog friends still work despite extremely unpleasant side effects and I admire them so much-especially Renee and Kathy and Sharon.

Martha stopped by with some raspberries. She is heading out tomorrow to Santa Monica to deliver a paper and then to NYC.

I am reading Reading Lolita in Iran. Under the Islamic fundamentalist regime, these young women get together secretly and discuss Lolita, Jane Austen novels, and The Great Gatsby. All these books are banned there due to their western decadence. Lolita is especially decadent as its discusses the sexual relationship between a 12 year old and her step-father, which most people would agree is awful but under the Ayatollah, the marriage age dropped from 18 to 9. Suffice it to say, these nine year old girls have little say. Legalized statutory rape. It is amazing how people survive in such difficult circumstances.

Stats

No I am not going to go on (again!) about my dismal prospects of survival or of TNBC in general though I did find myself saying something stupid the other day referring to the estrogen positive tumor type as the 'good' kind to someone whose wife is surviving it and was reminded that there is no 'good' cancer-this was right after I published a rant from a lymphoma survivor stressing there is no good cancer. But my new statistics-I put on a page counter, nerd that I am, that not only counts how many times my pages are visited, but tells me where they are from, how long they spend, what computer and browser they have, their IP address, etc. Sort of scary. Not that I will do anything with this information but it is good to know that if I could do this, anyone could and may exploit this somehow. Anyway, most of my visitors are obvious except I never told my daughter that I had this blog but either she or someone else in Arlington spent 4 hours with the pages open. Also puzzling, someone with a Kizer computer in France has checked in. Visitors from England and Sweden also.

Winter has finally come here. Damn it. There is snow on the ground but I hope the roads are not icy. I took a day off from running yesterday and concentrated on tackling some cleaning projects here-barely a dent sadly. My new friend N, who was one of my roommates in Italy, is coming over in a few hours and it would be nice if she didn't think I was a total slob but after sharing a room for 5 weeks, I guess there will be no surprises.

One of my biggest annoyances (aside from TNBC) is Naomi's injury. She took a hard elbow to her jaw joint at bball the other night. It has gotten alot better but until a physician clears her, she is benched. I haven't gotten around to finding another doctor other than her pediatrician-a very, very conservative woman who used to live across from me. Her daughter, the same age as my son, was on a soccer team I coached when the kids were 7. I remember one 40 degree sunny morning she knocked on my door wondering if I intended to have the game that morning as it was so cold and that the kids certainly would all get pneumonia. I reminded her that the rec department called off games ONLY if there was lightning and actually the kids with all their running around, would be quite comfortable. She said she couldn't risk her daughter getting sick-I was thinking to myself "yahoo!!" as the girl was such a pain and utterly nonathletic and I had too many kids to deal with as it was but a part of me was thinking, this woman is a doctor yet she thinks one could become ill playing outside when it is 40. ( I am outside as much as possible doing stuff in all kinds of weather and have yet to become ill from it) Of course she is from India where 40 deg is considered very cold. When Naomi had mono, she thought she should sit out the soccer season as her spleen could burst even though it had shrunk to normal size by then. And as for the birth control pills, which I have Naomi on with the help of Shanna's OB-gyn friend, I could just imagine her reaction to that. Her daughters, now in their twenties, probably don't even date or at least tell their mom about it. Naomi and bad menstrual cramps are not a good combo plus I am afraid that sooner or later, these men that she attracts will talk her into having sex despite my many warnings. Just last week, one of my other soccer players for many years, gave birth to twins. She is only 17!!! We have an appointment with the doctor later. All she has to say, the jaw isn't broken and we should be good to go.

We had a bball parent meeting yesterday. We should have a very good team-so good I don't know how much Naomi could contribute (this is her 3rd year on varsity) but the coach told me he is depending on Naomi alot and I need to get this jaw issue straightened out. Of course we had to write down our volunteer time commitments-what will I be able to do once I start chemo?

Then I had to drive Naomi to the store so she could buy a videogame for her current boyfriend's birthday. I reminded her how much money she owes me, that I should be paid before her paying too much for a boyfriend that given her usual relationship time, will be done with in a few weeks. This one will leave for the Navy soon. She really has a poor concept of money. She has so much growing up to do and help from me.

N just called and will come tomorrow instead. More time to clean the house. What do I do all day with this time on my hands? At one point in my life, I led a girl scout troop, coached a soccer team, trained for a marathon, and worked full-time though house-cleaning was way down on the list of priorities. I do spend too much time doing puzzles-keeping my mind sharp only partially justifies this. Now I spend a lot of time researching cancer and running always is good for an hour. At night, there is homework to help with but not nearly as much as there was in the past. When I first 'retired' last year, we were planning Shanna's wedding and dealing with the aftermath of my mom's death. I spent a lot of time retitling things, going to the courthouse, accounting, redistributing assets, etc. Somehow the time just goes by. I am not bored-I have plenty of visitors. Over the weekend, two friends came over on separate occasions. Hopefully people will continue to visit me when I can no longer go out and about and when I look hideous.

Scary blog

While rooting around in my TNBC blogs today, I found another: the scariest one yet. This is a young woman with 3 young kids who suddenly found a tumor growing on her the same week one of her kids had a seizure. I'm not sure how big this tumor was but it was in her chest wall and was TN. Her nodes were clean and she had the standard treatment. One year later, she has a brain tumor, which they managed to shrink but it is still in her spine. My worst nightmare.

I was able to run a marathon this week (a week as opposed to the 3.8 h it has taken me in the past). Today's leg was especially tough, cold, constant drizzle and a very strong north wind. Where I live, going north is almost always uphill so south winds make things much easier. Even though I was soaking wet and could not stop for more than a minute or I would freeze, I felt good. Two weeks left of my health honeymoon before the poison.

I went out briefly with Deb and her friends last night to see this blues band whose main singer, Chris Canis, used to perform in her coffeeshop. I liked the music but it is hard to talk with a band playing so loudly even if they are good.

Issues

My brother-law's girlfriend sent me the above. My brother-in-law has been battling primary brain lymphoma successfully despite its bad stats.

Naomi is injured of all things, during basketball try-out week. This time she took a very hard hit to the jaw and it hurts alot. If it doesn't get better today, we'll have to deal with it. She does not suffer in silence. Still trying to ensure she gets up to speed in her art class.

When one goes on chemo, it isn't advised to shave as the possiblity of nicking yourself is high. These nicks won't heal as they usually do. It becomes a moot point soon enough as there will be no hair to shave. But I have to be real careful running before chemo (I know I won't be able to run during chemo) as I have yet to find a running bra that doesn't chafe me unless I put large amounts of cream on me. I have chafing scars all over me. I'll have to especially careful the week before chemo.

It was in the 50s yesterday and sunny. Good running weather though breezy. I met Anthony for happy hour. His wife finished chemo for breast cancer a year ago. It lasted 8 weeks vs the 16 weeks planned for me but she did not have TNBC. It was nice catching up.

Italia redux

Karen went with me last night to Wayne State battling traffic and very little parking. Fortunately, the program is run on "Italian time" so we didn't miss anything despite being late. Notte prima degli Esami is a light-hearted comedy that was very popular in Italy about some Roman seniors stressing out about their final exams. This doesn't quite translate well-these exams determine whether they can go to college so they are more important than the American finals. When we asked the Italian students (back in Italy) what they liked best about America, they all said, 'the music'. Lots of American music in the movie-even the Italian music had broken English phrases in it and the kids were wearing t-shirts with American cultural references. It was very funny. Now in American comedies, you always know how things are going to eventually end but not so in Italian cinema. The good guy doesn't necessarily get the girl. It was very amusing and I tried to figure out as much as possible without reading the subtitles. Della mia famiglia d'Abruzzo (o la nostra famiglia d'Aterno-as Drew calls it) the twins Stephania and Maria were there along with Holly, Jeannette and Robert. Elena and Piero were there as they are hosting the film. Afterwards, the Piccirellis and Karen and I, went to Traffic Jam and Snug, one of the few bright lights in Detroit adjacent to its small island of niceness-the historical district on Canfield. Most of the rest of Detroit is a scary, ugly place.

Naomi is out of control and very behind in one of her classes. Have to deal with this. How come she can't be good for once? She is so incredibly immature and selfish.

I've been reading a lot of first hand accounts about reactions to chemo. Maybe it would be better to go in blindly. There is this school of thought that thinking the worse will make it the worse. There was even some study giving people placebos telling them that they were getting anti-cancer drugs and the people's hair fell out merely because of anticipation. This was in Susan Love's Breast Book. Of course I don't believe that last study at all-who would agree to take chemo for no reason?

During Lamaze training, in the late 70s, they were careful never to use the word 'pain' in describing labor with the idea that anticipation itself is a large component of pain. My friend Mary was a new instructor then and practiced her talks with me. (she had had 2 babies already and they were very painful births so I thought it was funny she was trying so hard to avoid the word pain). However the down side of that as I quickly discovered, was that when you actually experienced pain, you thought something was terribly wrong with the labor or that you are just a big cry baby. I finally had given in and asked for drugs and was denied them as it was 'too early'. I said fine, give me a hammer and I'll just knock myself out. This upset my friend who was with me and she told the nurse that something must be really wrong for me to say that. She said, no-she's fine. Everyone says stuff like that-this is quite normal. Indeed, in the few breaks between pure pain, I could hear several women screaming on the top of their lungs. At least I was a quiet sufferer or maybe they were experiencing something quite worse. At one point, the OB wandered in and asked how was I doing. I said very calmly 'it hurts'. He was clearly irritated-well of course it hurts. Did you think it wasn't going to hurt? Well actually I didn't and this book that has your name all over it as an advisor, didn't say anything about pain. But no, I didn't say that as I was too busy surviving not debating. As I pushed out Shanna in a reasonable time, my labor was probably normal or even 'easy' as far as that goes. My point, as roundabout as it is, that the pain is real, not a product of negative thinking or a faulty mindset. It will be what it will be.

Aside from discomfort, extreme fatigue that lifting the remote to press it is a chore and hair-loss,
another common side effect of chemo is weight gain. Indeed women who have been thin all their lives turn into voracious eating machines when they get a break in their nausea. Alot of this seems to be due to the steroids used to prevent allergic reactions. But this scares me-I'm having enough trouble with obesity under 'normal circumstances', what will I do under steroids? And for more fun, they have linked 'negative outcomes' with weight gain-which seems counter-intuitive. But a general trend seems that the younger the patient is, the more chemo seems to bother them. I am hoping that my relatively older age will lessen my reactions. Alot of these people still have jobs that they need and/or young kids to tend. Also heart-breaking is that some TNBC women hadn't gotten around to having their children yet and are now finding that their dreams of being a mommy are dashed.

The MRI machine is down so my chemo-brain study session is cancelled for now.

Surviving

Today Deb and I spent a couple hours at IKEA. I told myself that I would just buy a few things for the baby but they had all this cute stuff....We then ate at a favorite Thai place in Canton. A nice time. Later Karen and I will go to WSU for the Italian film series. I am looking forward to it.

But while digging through others' blogs, I came across the following from a lymphoma patient about having 'the good kind of cancer'. Interesting and so I am pasting it here as some of it is what I have felt but of course, I am not as far into cancerworld as I will be. No gun is being put to your head here.

In February of this year I was diagnosed with advanced Hodgkins Lymphoma. I went through eight months of chemotherapy, everything looks really good, and now I am just waiting my post-chemo scans to indicate remission. I am finally done with chemo. Woop woop. This is very good news for me. I’m real happy about it and I am excited to get on with my life.I was a good cancer patient…no, a great cancer patient. I was tough. I didn’t curl up in a ball and hide, I faced it, I sucked it up, and got through it. I’m not looking for a medal, I just want to preface what I am going to say with the fact that I am not whiney or self-pitying, and that I realize that I am not the only one who’s had to deal with this crap, and that there’s worse things that could have happened to me. I have a wonderful family and caring friends that have formed a very lovely support system for me. I cannot thank them enough for all their help and love.That said, here’s my rant…This goes out to everyone I know – friends, family, co-workers, doctors, nurses, radiologists, technicians, friends of friends, exes, and others…
1. There is no “good” kind of cancer. Yes, this kind of cancer at my stage has an 80-85% survival rate. That’s great, I am happy about that – really, I am, but that doesn’t make it “good” or any “better” than any other kind of cancer. Cancer is a scary thing, the treatment is excruciating, and at the end of the day, if you happen to get “lucky” and be one of the 15-20% that don’t survive, that statistic turns from a “good” one to a not-so-great one. Really. That’s like one out of five. Can you think of five friends? Picture them. If one of them up and died would you consider it a “good” number of them? I didn’t think so. So please, don’t tell me I got the “good” kind of cancer – don’t even suggest it. Don’t even say, “Well, at least you didn’t get _________ cancer, that would really suck.” Uh, hello, this pretty much REALLY sucks. Next time you get cancer I’ll ask you if you think the kind you got is “good”.

2. Don’t tell me things I don’t want to hear. For some reason, it occurred several times that when I told someone what I was going through (which is kinda awkward anyway), they would say something to the effect of “OH, my (mother, sister, aunt, grandmother, insert any other relative or even remote acquaintance here) just died last year of cancer.” Or “Right, my (insert distant relative here) died of Hodgkin’s.” What the hell?? I have been diagnosed with a terrible disease and am undergoing intensive and debilitating treatment, and you’re going to tell me about someone dying? What? Seriously? It’s better just to not chime in here. Again, next time you get cancer, I’ll try this line out on you and you can let me know what you think.

3. DO NOT ask me about my hair. With the kind of chemo I had, my hair started falling out around treatment #3, slowly at first, then lots at a time until I finally, and very sadly, shaved my head. THAT WAS REALLY HARD TO DO. It’s about a lot of things…it’s about vanity and feeling ugly, it’s about the stigma of being sick and that being obvious to the world, it’s about knowing or not who you are without your hair/eyelashes/eyebrows, it’s complicated. And, I take ownership of the fact that some of that is really superficial shit – but it’s very real and it’s emotional. So, comments like “How’s your hair doing?” “Wow, it’s really thinning out!” “So is your hair just coming out in handfuls?” and “Is that a wig?” are not helpful and WILL make me cry. If you think this is stupid or oversensitive, let me say it again: next time you get cancer let me know how this goes.

4. Don’t tell me it’s going to be ok. Bottom line is this – I know I want everything to be ok, and I know you want everything to be ok – you wouldn’t be my friend/involved family member if that weren’t the case. Unfortunately, we BOTH know that it just might not be ok. We BOTH know that there exists the possibility that it’s not going to be ok and that the disease isn’t going to respond, or is going to come back, and that even if I am tough and brave, it could kill me. I have had to deal with that idea since the word “cancer” came out of the doctor’s mouth. In that moment, and in the hours and days to come, I knew that it could happen that everything was not going to be ok. If I didn’t know that, cancer wouldn’t be such a big deal. If that weren’t a possibility, we wouldn’t have shed tears when we heard the news. So, for my sake, don’t say that line. I know it’s the first thing that comes to mind, and I know you mean it well, but try something else that actually means something, like: “Whenever you need anything I’ll be there” or “This is going to be rough but I’m here for you” or “I’m on my way over with a last season’s Top Model” or even just “Give ‘em hell, sista”. I know you may not get it, but next time you get cancer we’ll share profound understanding when I tell you that I know it may not be ok and that I know that’s real scary

5. Don’t comment about my weight. Ok, here’s something that I didn’t know before I started this. Chemotherapy is NOT a weight loss plan – YES, they have indeed discontinued all the fringe benefits from the cancer card membership. Turns out, they give you steroids that make you hungry all the damned time. And, you feel like complete shit and don’t even have enough energy to walk up the stairs, much less to exercise. In the beginning when I was still trying to figure out how to deal with shitty side effects like constant vomiting, painful mouth sores, etc, I lost weight because I just literally couldn’t eat. But once I got that under control, the hunger would come on, and man, I can eat a lot. I was in pretty good shape (at the gym five days a week, healthy foods, etc) when all this started and now I have gained weight and am up a pants size. The once-muscle has turned into mushy fat and I’m not happy about it, but during treatment there was just no fix. So, the “wow, you’ve put a couple on, haven’t you?” or “I thought you lose weight on chemo” comments are not helpful and again, will make me cry. Next time you get cancer, see how you feel when I tell you to “hit the gym.”

6. Chemotherapy sucks. I think everyone knows that – I don’t know what the first thing is that pops into your head when you read that word, but I would venture to guess that it’s not something warm and smiley. It sucks, it really sucks. You vomit, are nauseated (which is so much worse than vomiting) all the time, you get terrible headaches, you can’t sleep, you get sores in your mouth and chronic yeast infections, you get seriously seriously constipated, your brain malfunctions and you can’t remember how to get to the bus stop or where you normally leave the toothpaste, your whole body hurts, your toenails fall off (wtf? Yeah) and now they give you shots to stimulate white blood cell production (at least in my case) that cause relentless, incapacitating pain that made you simply want to give up on living just to make it stop. Ok, I said it, chemotherapy sucks – and I am really good at being tough and not letting everyone know all the shitty stuff that’s happening to me at once, but you know it sucks. So, no, I am not interested in hearing you whine about a cold you think you’re getting, your scratchy throat, your eye/ear/sinus infection, your sleepiness, your headache, etc. I know you really don’t feel good, but c’mon man, suck it up – or at least go tell someone else who doesn’t have cancer. Next time you get it, you’ll drop kick the asshole that spends ten minutes talking about how bad their hangover is.
7. It’s a REALLY long road. Eight months is a long time to be sick. It just is, and I KNOW (I really know) that it gets old. In the beginning everyone called all the time, offered to go to chemo with me, sent lots of e-mails, came over to visit when I was sick….but after the months drag on it’s like people get sick of it. I understand that – ‘cause I got pretty sick of it too. I got sick of calling in to work, not doing anything fun, not seeing anyone….even just answering the damned “How are you feeling?” question….I felt like it was better to lie and say “fine” than to say how I really felt because people kind of don’t know how to react or don’t want to hear it. I have a wonderful husband and mother who took exceptional care of me, even when they needed a break, even when it got old, even when they got sick of hearing me say I felt like shit. They did that because they knew I needed them. I needed other people too, I needed girlfriends to just come over with a movie or a dvd of a funny tv show, or to call me on the days they knew I had treatment, or to just call when they hadn’t heard from me in days. Some did and some didn’t. You know who you are and why you didn’t. Maybe you didn’t feel comfortable or maybe you were too “busy.” Regardless, I love you, and I will do it for you the next time you get cancer.I really, really hope you never get cancer. I mean that for everyone – even if you’re a jerk, even if you write to me and rant meaningless bullshit about my rant, even if you really deserve to have something nasty happen to you – I hope you don’t get cancer. It’s awful. I’m not one of those “I’m a survivor!” types, I’m not one of those in-your-face super tough post-cancer freaks, I’m really normal and I will get over this. That said, if you do get cancer or if your friend or (insert any relative here) gets cancer, you can bet your bottom dollar that if/when I hear about it I’ll be on your/their doorstep with a big teary welcome to the cancer club hug and a mop and bucket to clean the floors, or popcorn and a dvd for the kids, or dinner so you/they don’t have to make it, or whatever it takes, for as long as it takes – and you won’t have to ask for it, and you won’t have to say thanks, because we’ll both just know. It’s a special club and we take care of our own.

Chemo brain

I had my screening from the chemobrain people yesterday. They will evaluate my ability to perform certain tasks while I am in a MRI before, right after, and a year after chemo. I had told them that I wouldn't do this unless I got my results, which made them pause but that has been since cleared. I would be excluded if I were left-handed as they think differently, have metal embedded in my body, or was depressed. Depressed huh. How many recently diagnosed cancer patients facing imminent chemo are happy about it? Well it is normal to be sad about it. Let's see if you are truly depressed or just sad. Do you enjoy doing anything anymore? Well yeah but I'd enjoy them a lot more if I didn't have cancer.

Once it was determined that I wasn't 'truly' depressed, we went on to determine my cognitive abilities. Can I balance a checkbook? What else can I do? I said I could do the Sunday New York Times crossword puzzles and recently went to college getting the highest grades despite much younger classmates while learning a new language. We'll see what happens to these cognitive abilities. I really hate the idea that my brain might turn to mush even more than losing my hair.

My Uncle Mel died Sunday at 93. Just a few years ago, he was dancing at my son's wedding.

Despite the nasty wind and snow flakes, I was able to run-even easier than usual. Naomi spent a good part of the evening crying about some guy then being on the phone with him forever. Need to get this story soon.

I do spend a lot of time on the computer trying to research things. I had read somewhere than Nigerian women, especially the Yoruba sub-group, have more breast cancer than other groups. I worked with a Yoruba man and we have discussed their 'twin culture'. This sub-group has the highest rate of fraternal twinning than any other group. Indeed, Augustine had 2 sets in his family. (They also had an interesting take on the primogeniture rule-the 2nd boy to be born in a set was considered legally to be the 'first-born' as he was thought to be more clever for having his brother scope out the situation first). Why are these Yoruba women prone to super-ovulating? Is it because they eat alot of estrogen filled yams? (These tropical yams are completely different from the American sweet potato variety-they are almost 50 lbs and white and are a major source of food) Many Yorubans ended up slaves. In Brazil, their ancestors still speak Yoruban though American slaves were purposely split up so they would not speak their original languages. Many African Americans do have Yoruban roots and as a group, have higher rates of twinning and have a higher rate of getting TNBC. They are probably not eatting tropical yams. (the original birth control pills were synthesized from estrogens derived from Mexican yams). Another strange fact is that fraternal twin girls have a high concordance in getting breast cancer meaning if one twin gets it, the other has a good chance of it too. Fraternal twins are no more genetically similar than their singleton sisters but they are sharing the same environment. Of course if an identical twin gets breast cancer, the other one will probably too. The one who hit puberty first gets the cancer first-no other factor has any relevance (like number of children, menopause age, age of first child). How do all these factoids relate? I'll figure it all with my few remaining neurons.

The weekend

So November finally came with its cloudiness, grayness and cold. It always has been my least favorite month. Jan came over Saturday and we went for a walk in Furstenburg Park battling the wind but managed to walk for a couple of hours before the rain. Martha came over later with a delicious dinner that I felt guilty taking as for now, physically I am in good shape. We then watched the rest of the "Weeds' episodes that I borrowed from Karen. We spent some time making fun of an ostentatious memorial her brother has proposed for her parents that she has to partially finance- part of it is a trite poem by her great-grandfather, the inventor of corn flakes, that the brother has now indicated is his grandfather. Could be a typo but then we thought he may have purposely misled people to think he was the grandson instead of merely the great-grandson of someone famous for whatever prestige that would give him.

Sunday I did manage to get a run in in the drizzle. Once I get going, I feel fine. Later we had snow showers. Josh and Julia (and Sunny) came over for 'the family dinner'. He thinks he might have grazed a deer on the way slamming on his brakes to avoid hitting it sending Sunny flying in the car. The deer are particularly thick along Dexter-Ann Arbor road. I tried to include Naomi as much as possible in the food preparation as she is so far behind in 'life lessons.' She has accepted that she will be with us in the near future as her peers scatter to the wind but I need to focus more on her growing up regardless of my fate. So she made the cream puffs and custard filling though I had to stand by to remind her what the next step would be. She was proud of them. Thanksgiving will be at J&J. I was asked to bring dessert.

Later my cousin Donna called. She had just learned of my cancer from our aunt. I had meant to call her but I have a hard time calling people saying "I have cancer'. I am glad she called. Unfortunately the very weak Michigan economy is really impacting her family. Tim has been searching for a job for the past 7 months and her hours have been cut. Out-of-state companies are hesitant to offer house buy-out programs as they know how hard it is to sell a Michigan home.

I am spending less time in the middle of the night obsessing about my situation so I guess that is progress. There are periods of time that I don't think about it or think of it as something happening to someone else.

Good review article on TNBC

The following is a recent review on where treatment stands on treating TNBC and what factors may be targeted in the future. http://www.cancernetwork.com/display/article/10165/1340727?pageNumber=1

The article is 'technical' but is a good review nonetheless.
Its points are that:

1. TNBC is much more deadly that hormone receptor types
2. It responds more to Adriamycin than other types.
3. It relapses more quickly than other types
4. If it doesn't relapse in 3 years, it probably won't
5. It has a different pattern of metastises rarely going to the bone
6. Its incidence is in a different population than most breast cancers
7. There are numerous 'targetable' growth factors in TNBC that are on the verge of being exploited

Right now I am trying to get myself to go out into the cold drizzle and run. Lazy, lazy, lazy.

It could be worse...

These are words that rankle me and some of my breast blog buddies. When breaking the news of her TNBC, a blogger was told, well at least it isn't in your other breast.....
Well at least I have that.
It could be worse...

Well it could be a whole lot better.

The problem I have with these words, which I know 99% of the time are really meant to comfort me and what kind of person lashes out at good friends who are just trying to comfort you, is that they really put me on the defense. Not only am I having to face a possibly deadly disease that will and has disfigured me but I have to justify why I am not thrilled to death at this prospect and why I am not listing all my blessings..at least I was able to live 55 years, have 3 beautiful kids that are (mostly) grown, see two kids get married, see my grandchild, have a large chance of survival, have a doting husband, have good friends, don't have it in my nodes, etc so I am an ingrate and a whiner on top of it all and it makes me feel so alone. Yet I realize how destructive negative thinking is and how it will really isolate me if these words leave my mouth. How will people want to be around me if they have to tiptoe around land mines such as this?

When I lost a baby 19 years ago, I was a wreck-even way more upset than I am now although post-partum hormones or lack thereof might have made things alot worse.. I know that even more people have experienced miscarriages than breast cancer-sometimes multiple times. I knew I should be grateful for having 2 healthy kids already-one of each sex and I seemed to be blessed with fertility-indeed I got pregnant without even trying and even while taking precautions against it but I was so overwhelmingly sad. People didn't want to hear about it, which I understood but sometimes they started with the 'it could be worse...' comfort line. My favorite was 'well it was a good thing it was so young so you didn't get attached to it yet' . What do you say to that? I guess I am an idiot because silly me, I was attached to it? Did this person mean to hurt me? No, she would never knowingly hurt me. I figured that maybe the only place I could talk was with people who went through this so I went to a support group---once. It reminded me of that old game show "Queen for a Day", which I thought was absurd even when I was 9. The premise was that 3 women got on stage and had a turn telling their pathetic stories, which conveniently could be made happier by having some consumer goods. One story would always be 'so what.." but the other two would be close in terms of garnering sympathy. The women would come on stage at the end of the show and the audience would vote by applause on who should win measured scientifically by the "Applause-o-meter" that an average 5th grader could construct. The winner would get her crown and her consumer goods. A whirlpool bath solved one woman's problems-wasn't quite sure what that was when I was a kid. Anyway, at this particular support group, each woman told her sad tale and they were very, very sad, way sadder than mine, so much so that I was acutely embarrassed to even bring mine up as I could read their minds... "So..." Suffice it to say the "Applause-o-meter" didn't even register for me.

I am not looking for applause or even sympathy. Just an unjudgemental ear and to know that I am not so alone.

So during the last 3 days, it has been warm and sunny. I was able to garden a little though I grabbed a stinging nettle too late. Ow! I have finally straightened out my testing schedule with UM, who never got back to me as they should have. A lot of the preliminary work could be done in one day including dealing with my possible hyperthyroidism, flu shot, etc.

I feel badly that I didn't run yesterday-squandering one of the few days I have left-but sometimes it is so hard to get myself out that door. It is colder today but I will run.

Josh took us out for lunch at a good sushi place which had these very tasty bento boxes. We are still debating who will have Thanksgiving-usually it is me-Julia wants to cook but he wants my stuffing but he can't tell her that. He has been the easiest kid to raise and I am so proud of him. I am glad that he lives nearby and comes over so much.

I did finally tell my buddy Dan I have cancer. He is still trying to obtain funding for his drug company that makes anti-pancreatic cancer drugs out in California. The last company he started was bought out by a larger company which then got rid of him. He is an interesting, energetic person who really believes he has the knowledge to tackle deadly diseases. Our families did alot together when he lived here 20- 30 years ago. He was my training partner for triathlons and my boss for part of the time. He has privileges at UCLA and could get on databases that I no longer have access to and has offered to get me any data that I need.

Later I went to Karen's. She is such a good friend but I was having a little trouble being cheerful.
I think that a bigger battle will be putting my mind in the right place than actually dealing with the physical problems of the cancer.

Happy ending cancer story

"Anyone who has pets will really like this. You'll like it even if you don't and you may even decide you need one! Mary and her husband Jim had a dog named 'Lucky.' Lucky was a real character. Whenever Mary and Jim had company come for a weekend visit they would warn their friends to not leave their luggage open because Lucky would help himself to whatever struck his fancy. Inevitably, someone would forget and something would come up missing. Mary or Jim would go to Lucky's toy box in the basement and there the treasure would be, amid all of Lucky's other favorite ! toys. Lucky always stashed his finds in his toy box and he was very particular that his toys stay in the box.
It happened that Mary found out she had breast cancer. Something told her she was going to die of this disease....in fact , she was just sure it was fatal. She scheduled the double mastectomy, fear riding her shoulders. The night before she was to go to the hospital she cuddled with Lucky. A thought struck her...what would happen to Lucky? Although the three-year-old dog liked Jim, he was Mary's dog through and through. If I die, Lucky will be abandoned, Mary thought. He won't understand that I didn't want to leave him. ! The thought made her sadder than thinking of her own death. The double mastectomy was harder on Mary than her doctors had anticipated and Mary was hospitalized for over two weeks. Jim took Lucky for his evening walk faithfully, but the little dog just drooped, whining and miserable. Finally the day came for Mary to leave the hospital. When she arrived home, Mary was so exhausted she couldn't even make it up the steps to her bedroom. Jim made his wife comfortable on the couch and left her to nap. Lucky stood watching Mary but he didn't come to her when she called. It made Mary sad but sleep soon overcame her and she dozed. When Mary woke for a second she couldn't understand what was wrong. She couldn't move her head and her body felt heavy and hot. But panic soon gave way to laughter when Mary realized the problem. She was covered, literally blanketed, with every treasure Lucky owned! While she had slept, the sorrowing dog had made trip after trip to the basement bringing his beloved mistress all his favorite things in life. He had covered her with his love. Mary forgot about dying. Instead she and Lucky began living again, walking further and further together every day. It's been 12 years now and Mary is still cancer-free. Lucky? He still steals treasures and stashes them in his toy box but Mary remains his greatest treasure. Remember....live every day to the fullest. Each minute is a blessing from God. And never forget....the people who make a difference in our lives are not the ones with the most credentials, the most money, or the most awards . They are the ones that care for us. If you see someone without a smile today give them one of yours! Live simply. Love seriously. Care deeply. Speak kindly. Leave the rest to God "

Anyway, the above was sent by Nancy.

Another nice day and I went for a longer run. My breast actually sloshes, which is creepy but my endurance is returning.. I got a call from the 'chemobrain ' study last night. They test my brain functions and estrogen levels before, right after and a year after chemo to quantitate my decline. I said I couldn't schedule anything with them until UM calls me with my dates so they will bug UM themselves to give me their dates which was supposed to happen last Tuesday. I am not sure who I am to call-this universal scheduler person or the oncologist office.

My Kizer insurance is supposed to run out at the end of this month-good timing. I can buy 'retirement' insurance to replace it but it is not obvious how to do it. Lots of unreturned phonecalls about that. Later in the day yesterday, Brenda and I went for a nice walk.

Elections

The yearbook ad I finally submitted after much messing around with the defective PowerPoint we have on our "vista' computer which arbitrarily erases files and wouldn't let me save in a usable format. I was trying to transfer files to our old computer which has the good version of PowerPoint-the one I had at work- but silly me, couldn't figure out where to plug in the zip-drive. I spent hours on this no thanks to the erase for no reason function.

Steve left at 5:15 am to be an inspector returning around 11:30 pm--so at $8/hour...
He had a mostly UM student district meaning no lines after 5 pm like the other precincts. Some African-American Huron students had signed on to help out. Although they were very nervous at the start, these boys were the best workers.

As I had a lot more energy today, it would have been better if I voted today instead of Saturday when I was still woozy from the surgery. It was a beautiful day. I was able to run at Gallup Park after dropping the ad off at Huron. The schools were closed today to students as lot of the schools are polling places. Later Deb and her dog Lhasa came over for a 3 mile walk along the river. Still lots of fall colors even so late. Later Jo, Deb and I went out for dinner and then I came home to edit Naomi's English paper that she was half-heartily working on all day. She and her buddy went into town to get free Ben and Jerry's for those who voted, a long line as students don't pass up freebies. They were warned that they wouldn't get anything as they had no sticker on and people wondered why they didn't vote. We're 17..we woulda voted. I passed up a neighbor's election night party for my paper editing duties. The subject was 'My favorite place' and they were to jam it full of similes and metaphors, a problem for her as she is so literal..he was as tall as a 6 foot tree..type of girl. New York City was her subject-subway stations smelling like litter boxes, roads being parking lots at all hours..

So for the next 4 weeks or so, I have a break from cancer world except for the heart function test, the wig selection, and another mammogram. When I told Josh my schedule, he said good, now you can cook Thanksgiving Dinner. I will try to have fun. BBall season will be in full swing. Try-outs this week. Naomi was one of the few to make the varsity guard times in the mile run-7:08 without practicing even though she will be a 'post'. Only one girl gets to have a 'post' time as she is over 200 lbs-9:45 for her. The rest of the girls need to run everyday until their times are acceptable. The team will have unbelievably good guards with only 4 post players-Naomi being the most senior one though one girl is 6'2", Naomi can jump higher.

The oncologist visit

At one point of my visit, we had quite the crowded room-the surgeon and her nurse-practitioner, the oncologist-nurse practitioner, the social worker, Steve and myself. The surgeon said my case was reviewed today by the tumor review board and it was agreed, no more surgery even if I am full of calcs. The social worker was on hand in case I have 'issues'. The oncologist-NP went over my stats -this time using the numbers for the tumor size 3.1-5 cm. I said, wait-Dr. Diehl used the 2-3 cm category. Well one of your tumor's 3 and the other is 1 cm so we put you in this category. So with this new big tumor size, 50% chance of survival without chemo-72% with chemo. I guess they were trying to show how much more important chemo is for us big tumor people. She went over all the protocols and all the research programs. They want to enroll me in a 'chemo brain' study to quantitate the damage chemo does to my mind. Then later, a drug will be given to me to prevent bone mets. Eventually the oncologist came in, N. Lynn Henry, who is both a pHD and MD. I had 3 protocols to choose from: Ultrahigh dose Adriamycin for 12 weeks-no thanks. 4x2 week cycles of AC followed by 4x2 week taxol or 12 x2 week C+taxol. I said I wanted the one without the Adriamycin. She said she didn't think it would be nearly as effective and heart problems are seen less than 1% of the time and usually to people in much worse health than me. She said that triple negative cancer responds much better to chemo than the estrogen type. Also, if it doesn't reoccur after 5 years, I am home-free whereas the estrogen cancer can come back 10-15 years later. Anyway, she was very positive and perky and willing to listen to me. For now, I will do the 'usual' protocol starting Dec. 2. Barring no problems, I'll be finished mid-March with chemo and the end of April with radiation. It will be a long time until spring. I need a flu shot, another mammogram and some complicated heart function test (a MUGA).
I got a prescription for a 'cranial prosthesis' aka a wig. My hair is due to fall out in the 3rd week of therapy-just in time for X-mas. At any rate, except for some tests, I am free for the next few weeks.

triple negative in all senses

I've been reading like mad in preparation for my meeting with the onc today. Very depressing stuff and lots of conflicting articles: ones that say Adriamycin (pure red poison to the heart-the one I really want to avoid-one blogger refers to it as the red devil) is useless against TNBC and ones that say it is the standard treatment. But some new articles are especially upsetting: how TNBC has an extremely high recurrence rate-now it isn't clear what they mean by recurrence-another breast tumor-not so bad-or a metastisis (very bad). If the former is true, why don't they recommend a mastectomy from the start? But one article said that unlike other BCs, TNBC tend to go to the brain and if that happens, you have 2.9 months until death. Chemo does nada against brain mets in preventing or treating. "Regular" BC goes first to the bones, then lungs then liver. Now I used to think that bone mets were the worse-can be very painful and this is what Elizabeth Edwards has. Hers is a single spot and it will eventually kill her but maybe not for years and years.
My blog buddy "Sunny" is finished with chemo (altho the side effects aren't finished with her) but her onc recommended keeping her port in (which needs to be flushed regularly)because of the 'high' recurrence rate of TNBC. This eroded her hope (at least temporarily-she seems to be doing much better today). My brother-in-law had a brain cancer, which usually has a high recurrence rate but they removed his port (a big deal as he is on coumadin and any surgical procedure is infinitely more complicated.)

I got up early to deal with Naomi. She was supposed to make a collage of her pictures for the yearbook that was due last week. I kept nagging and nagging so she finally did it late last night and it is awful. I will redo it myself and submit it on the way to UM and she won't find out until May that I've changed it. By then I could be dead when she has her big fit.

Anyway, in the Free Press today there was a story of a 38 year old mom who discovered her TNBC while nursing this July. She was told she has only a 30% chance of recovery, which sounds real low. I immediately went to her online journal (acupforkim.org) to get details. Bigger tumor (5.2 cm) and in all 6 nodes that they had sampled. Does NOT have BRAC1 as suspected so her little girls won't have that hanging over them. The family has a small chain of coffee shops in Fort Wayne Indiana that aren't doing well given the economy so someone started an e-mail campaign for people to patronize their shops so financial ruin would not be so much of a factor while dealing with TNBC.

She (Kim) is dealing with this with unbelievably good humor. They have to sell their house and she was painting while doing chemo . Not a good idea to be shedding around fresh paint.
Jan came over yesterday with sweaters for me from resale shops. She is replacing her entire wardrobe as the demolition has left potentially toxic dust on all her belongs. Between rainstorms, we were able to go for an hour long walk. We then watched the 2nd season of "Weeds" that Karen has left for me.

voting

As I was feeling dizzy if I have to stand more than a few minutes and I am not sure how I will be up to dealing with the lines Tuesday, I went to vote yesterday. I certainly didn't escape the lines. I stood in line for 10 minutes to put in an application and then waited 20 minutes for the ballot. There were only a few chairs-filled with college students. I sat on the ground but it was very hard to get up without my right arm. Of course helpful people tried to pull me up with that arm....I should have had Steve get the ballot for me. I was (again!!!) feeling sorry for myself but for all I know those healthy looking college students could have heart conditions. And I guess I look healthy and as recently as 4 days ago, could be seen running around the neighborhood.Lots of people there were election inspectors hired at the last minute (I was going to be one...)
It was almost 70 again and we went for a 45 minute walk this time running into Brad and his dogs again. We had finally finished the feast he had prepared. Shanna called. Oliver is doing just fine according to the doctor. She and Ramy decided not to buy that cheap condo in a working class suburb of Boston as the crime rate is 4x what it is in relatively upscale Arlington.

My breast is now green from the bruising and still hurts but the wound seems to be healing fine.
Nervous about my meeting tomorrow with the oncologist but I can always get a new one if I can't stand this one.

Good news

Late yesterday afternoon, Dr. Diehl called to say that all the microcalcifications removed were benign including that patch that one radiologist thought was early cancer 9 years ago. Calcifications can be a sign of cancer and their presence makes the tumor visible by x-ray but calcifications could be a sign of inflammation also. On that mammogram I got last week, it looked like the milky way, there were so many calcs-basically a strip an inch thick and 4-5 inches long and she wondered why I burst into tears when she said that they could be cancer. She then said I had to come in when I was healed to see if they indeed are all gone. As there was so many, I think I probably still have some but if the ones removed were benign, shouldn't the ones left be benign too? One could argue that, she said but most radiologists want them gone before they begin treatment. So the next step is me meeting with an oncologist Monday-do I have a preference for a woman or a man? Hayes or Henry? I said I would prefer one that is most likely to let me have some input for my treatment-for instance, I really would like to avoid Adriamycin which seems like overkill for my particular situation and I do have literature with regimes for triple negative cancer that are as successful, if not more so and they aren't from the Journal of Wishful Thinking. She said she'd see what she could do.
As for my wound-it is much longer than before and my breast is quite a bit smaller even with the swelling and lop-sided. I am not as bruised as the first time and the wound seems to be healing but I still have pain and I am very tired and feel dizzy when I get up. Steve was so hell-bent on going for his 2.5 hour running routine (he went inside when it was really nice outside), I was stuck behind. Taking a shower when I am dizzy is dicey though I did it anyway. I couldn't swaddle myself when I finished. I hate being so helpless. I have trouble reaching things and can't even let the dog out as he has step phobia now and needs to be carried. By the time he came back, it was too late to vote as he needed to take Naomi to Dexter right after school. I was feeling sorry for myself.
Josh did come over around lunch (he works 4 days a week). Later Steve and I did go for a walk after I got the 'good news'. It was nice outside and I was able to sit among my few flowers that survived the bad frost. Karen came over later with wine but it knocked me out even though I am not on medication. Also my hot flashes have been increasing. I threw away the Prem-Pro as soon as I found out about the tumor-one is supposed to gradually wean oneself from it but I didn't want to feed my tumor though I didn't know for a while that it is not hormone sensitive. I slept very fitfully as I keep rolling over onto my sore breast and I kept hearing Spud pace around as Steve never remembers to let him out. I kept having dreams about having to catch a series of trains and barely getting on at the right time.