A Real Girl

Dear Friends,

I cannot believe it has been so long since my last entry. Probably no one checks this place anymore, but just in case, I thought I would write.

Years ago I used to send out holiday cards. Not ones made out of photos of my children. I could never accomplish that. But I would send out some kind of note wishing peace on earth, or a party invitation, or in more recent years, a lengthy email about my flawed life that made catty fun of the holiday letters we occasionally receive about the multitude of sickening blessings enjoyed by others. (Not that I don't recognize the multitude of blessings I enjoy.) This year I did none of that, so I wish you belated holiday cheer, and good health and plenty of joy in 2013.

Speaking of health, mine is good. January, 2013 is my two-year anniversary. A significant one given my particular disease. It has been a challenging couple of months leading up to and passing this milestone. Over Thanksgiving I was certain that the cancer monster was on the prowl. First it was one symptom, then another. I struggled to create and maintain holiday cheer through my bouts back and forth between feeling sure it was nothing and feeling sure I was doomed. Three doctor opinions (and miserable weeks) later I was persuaded that my cancer was not yet back. I know now that I was preparing myself for something bad to happen. It was January 2, 2011 that I felt the lump in my right breast. Two months later I was told that if I made it to two years without recurrence that was a meaningful thing. So Amy Little (as my friends call me) was getting ready for the sky to fall. It did not. If I believed it mattered I would give thanks.

So, in other news, I am growing new ones. Yes my friends, I am working on a major (well, maybe not so major by some people's standards) reconstruction project. There is nothing in this life that is more absurd than the process of breast reconstruction through expansion and implantation. (Heads up to the squeamish, and to those of you who grimace at TMI - now that you know I am fine, please close this screen and come back in a few weeks.)

In September I had surgery to insert "expanders" under my chest muscles and skin. The expander is basically a pouch made out of silicone. It has a tiny valve in it. Once a month I go into the surgeon's office for an expansion. To do this the surgeon uses a tiny magnet to find the valve and then sticks a hollow needle through my skin into it. Using a large syringe connected to the needle he squirts a tiny amount of saline into each pouch. To summarize, I have two balloons in my chest and once a month I visit a strange man who blows them up a little bit.

Once my skin is inflated to the point where it might look like I have boobs, I will have more surgery to remove the expanders and replace them with silicone implants which supposedly will feel more boob-like than the cement hemispheres that I currently carry with me wherever I go. As for nipples, my surgeon says "we'll look into that later." Whatever that means, but trust me when I say...boobs without nipples are like faces without noses.

All of this would be pretty straight forward (well, from the surgeon's point of view...for the rest of us it is a twisted, nightmarish effort to cosmetically diminish bad memories) except that my right side was radiated 33 times in 2011 so my skin on that side is so fragile that we may not be able to squeeze a new boob under there. (I hate to think of what the worst case scenario is here. One day the balloon inflater blows a little too hard and I explode?) Most people who undergo radiation for their breast cancer do not attempt this kind of reconstruction, but I did not have other reasonable options. My surgeon says my chances for successful reconstruction are 70%.  (Again, it is not entirely clear to me what unsuccessful reconstruction might look like, but I guess I am willing to take the odds.)

The process itself is not too uncomfortable. I was laid up for about a week after the last surgery in September. I had the awful drains dangling from my body for about 10 days. Those are the pouches they attach to your innards after certain surgeries to allow revolting fluid to drain from the surgical sites to minimize the risk of infection. Twice a day you have to squeeze out the fluid to empty the drains. (Kind of the opposite process to the one I am currently enduring.)

The monthly "inflation" visits aren't too bad. I lie on my back close my eyes super tight, and the creepy man sticks a needle in my chest which hurts about as much as you would expect. The feeling of being inflated with fluid, however, must be one of the oddest sensations known to woman. (Think "Lars and the Real Girl.")  (All names appearing in this piece are fictitious. Any resemblance to real persons, alive or dead, is purely coincidental.)

I've been inflated 3 times and am no longer concave which does make me feel a little better. I am hopeful that soon I will feel whole - or at least real.

I miss you all.

Lots of love,
Amy

Hair Today Gone Tomorrow?

Hello my friends. I need to rant a bit about the ongoing hair problem. Last time I spoke on this topic, I think, I looked something like this...

But as with all things, time brings change.

Not too awful, but the above picture was taken a couple of hours after a shower. My head is covered with lots of conditioner and other anti-frizz products which I detest, but if I don't use them, I look like this.

You will agree with me that this is not a good look.

Everyone has an opinion about what I should do with my hair...everyone but me. I get comments like...

Cherish the curls. Nurture them. Use "No Poo" or "Some Poo". Don't wash it! (That one really mystifies me given the reality illustrated above.) Don't dry it! Go to a salon that does nothing but cut curls one hair at a time. Try this vitamin! Use this lotion! Cut the sides! Cut the back! Never cut it! 

And then there are the comments from people who haven't seem me in a long time.

• "Oh what beautiful curls! Did you always have curls like that?" (As they are giving me this compliment they are patting me on the head with increasing vigor trying, like I do every morning, to smash down the chaotic growth coming out of my skull.
• "Wow, I cannot believe your hair!I wish I had curls (this word seems to be polite code for ungodly frizz) like that. (This from a person with straight silky locks. Come on...really?)
• "Oh my god! Look at you! I love it? What did you do to get those curls! (Oh just a couple of mastectomies, a few months of chemotherapy, some radiation, and a lot of time in bed...)

All I want is hair that is long enough to pull back in a pony tail as I have done most of my life. 

This is as close as I can get to a pony tail.

I know, the resemblance is painfully obvious. 

Oh well. In a couple of weeks I have an appointment at one of those strange salons that cuts each curl individually. Maybe that will help. If not, I may consider going back to this.

As always, happy to hear your thoughts.

Happy fall and lots of love.

Mother "Friends"

I have a confession to make. I am one of those people who spends hours every week snooping around on Facebook. I originally signed up for Facebook so I could monitor my teenage children's online social life. It quickly became an obsession, but one that was narrowly focused on my children. Every time one of my children posted something or was "tagged" in a picture, I went wild with excitement. I posted silly comments that I was sure my children would find hilarious. I shared each post with friends and family. I looked at it over and over again with pride and adoration.

As my children got older, busier, and generally more intelligent, their online presence diminished. During this period I became less busy, particularly when I was spending a lot of time at home during cancer treatment. That is when the obsession "metastasized". (Keep knocking on wood that FB fever is the only thing that metastasized. More on that topic in future posts coming soon, but no worries, I am doing well.) 

I started reading all of the other stuff on Facebook. I poked around strange websites that spewed liberal rhetoric and suddenly I became their "friend" and started receiving hourly posts from all kinds of odd organizations that exist nowhere but on Facebook, as far as I can tell. I began to "confirm" "friend requests."  I began to read the statuses of my "friends" and wonder, "why did you post that?" "Who could possibly care, (except your mother)?" Then I started to notice all of the witty, empathetic responses to my friends' status updates and started to feel some "peer pressure" to post my own witty, empathetic responses.  

The real turning point came when I started to post my own photos of family vacations, hints of my children's accomplishments, clever commentary on current events made by other internet people. And, because I am not too photogenic, and for most of this time was physically mutilated and bald, I used pictures of rare animals or family pets for my profile. (This was surprisingly not confusing to my Facebook friends. Made me worry a little more about my looks, although there's no denying that I did look a little like an Iguana when my hair first started to grow back.) 

And then I heard this story on NPR: http://onpoint.wbur.org/2012/08/20/braggarts. It  is time to step back and self examine.

I feel the urge to share what I have learned about Facebook for those of you who have either not yet slipped down this rabbit hole, or are struggling to climb out. I am thinking that this exercise could be a valuable service to others in my demographic cohort. After all, the fastest growing group of new Facebook users are women over 50. Caveat: That information is a week old, so who knows what the current trends are. Caveat #2: These instructions are inspired by my own mother who does not use a computer, and so, therefore, may be more basic than some of you may require.

Terminlogy 

• FB: Facebook 

• PP: Profile picture 

• Friend: Someone whose name is listed on your FB page when you "click" on the word “Friends”. Not to be confused with a person you might want to hang out with or call if you are lonely. May be used as either a noun (as just defined) or a verb meaning to add person's name to your friend list. 

• Click: Tap lightly on left side of "mouse."
• Mouse: Small hemispheric contraption, usually found to the right of the computer. Only moves if you make it move so not very frightening if you come upon it suddenly. 

• Unfriend: To remove a person's name from your friend list. This action may or may not be noticeable to said "friend" so I advise extreme caution when taking this action. Do so only when you intend to send a passive-agressive message of dislike. 

• Spouse/Daughter/Son/Relative of Any Kind: See definition of “Friend” above. 

• Status: Useless information about what a person is doing at that moment that makes you wonder why anyone, other than one’s mother, would care. 

• Like: A "button" that you push if you want everyone on FB to know that you approve of a status or any other post on FB. 

• Button: A place on the computer screen where you place your cursor and click.

• Post: What you do on FB. If you don’t do this, people think you are a “stalker.” 

• Stalker: Someone who looks at FB but does not post.

• Wall: "Home" screen for each FB subscriber. 

• Home: Virtual place where you spend all your time, focus all of your attention and waste away your life.
• Home 2: Physical building where your body receives actual sustenance and rest. Sometimes a place where other bodies are similarly maintained, in particular those with whom you share genetic material.

• Wall 2: Metaphoric term that describes the barrier between you and all your friends and family that results from spending too much time on FB and not enough time actually talking to them.

Rules

• Never ever comment on anything relevant to your teenage child. 

• Do not try to make a funny comment. 
• Do not "Like" a photo. 
• Do not post a photo or even take a photo of your child. 
• You might as well extend this rule to additional forms of communication including telephones, cell phones, and physical interaction. Whatever you say or do will cause great embarrassment, humiliation and anger. Stop trying.

• If an old friend that you haven't spoken to in 20 or 30 years "friends" you, "confirm" the request, but do NOT, under any circumstances, attempt to act friendly. Assume that the friend merely wants to look at your wall to see how you have aged, (I like to imagine the reaction to my Iguana PP) but has no more interest in actually connecting with you than s/he had over the last 20-30 years.

• When the names of friends pop up on FB that tempt you to "friend" them. Don't give in. It will only create social pressure, angst and hurt.  

Conclusion

Stay away from FB. If you must participate "friend" only one person - your mother. 

Disclaimer

This piece is written from the perspective of a socially phobic, neurotic, hypocrite, who obviously does not believe much of what has been written here given what she has written here. (Stuff that only her mother would be interested in.)  She begs not to be "unfriended" as a result of this blog post.

Still Not Dead Thanks to DFCI

Hello Friends,

Just in case you were beginning to wonder...I'm still kicking! Life is good. I've finished my treatment. I'm working part time. I'm exercising. I'm gardening. I'm enjoying time with family and friends...what else is there?

How many times have you heard about a person with cancer (I try to avoid the phrase, "cancer victim". I don't really feel like a "victim.") saying something like, "I'm just grateful for each and every day." Well, I'm not sure I feel like that. I'm not sure that my gratitude for days has changed much over the last year and a half. I am, I suppose, more focused on finding ways to be happy every day. I'm doing a good job at that. I am happy. (That was strange. I'm not sure I have ever written those words before. Not that I haven't felt that way. I've enjoyed lots of happiness in my life. But I may not have ever said so in writing.  Strange for someone who tends to overshare, at least, when writing.)

Enough introspection for one day - it may detract from my happiness.

So, as I mentioned, I finished my treatment. I want to share with you a thank you letter I wrote to my health care team at Dana Farber. Spread the word. They are great. And if you ever wonder which cancer organization you should donate to, donate to your local cancer research institution. It is researchers and research subjects who improve care and treatment for cancer.

_________________________________________________________________

THANK YOU

I have breast cancer. Invasive ductal carcinoma. HER2 positive, stage 2.  I got this news on January 18, 2011. I had bi-lateral mastectomy on February 14. I began chemotherapy in March. I finished chemotherapy in July. I began radiation treatment a couple of weeks later.  I completed radiation in September 2011.  I received Herceptin for 12 months.  I completed Herceptin on April 30, 2012. I will take one Arimidex tablet every day for the next four years if I live that long, and I feel pretty confident that I will, thanks to my health care and 21st century medicine.

Not a very original story. Health professionals at Dana Farber can treat people like me with their eyes closed. But they don’t.  Everyone I interacted with at DFCI treated me with their eyes, their hearts, and their minds open. 

By everyone I mean everyone: Every employee, from the parking level to the first floor information desk, to the lab and to the 9th floor staff.  Each one of you helped me to feel safe, cheered, respected and cared for. I frequently told my family and friends that the whole cancer thing was nowhere near as awful as one might imagine because of these good people.

It isn’t easy getting to 3 or 4 medical appointments a week, and the DFCI staff knows this like they’ve all been doing it themselves. They did everything they could to minimize the frustration, anxiety and discomfort. I don’t think I ever had a parking problem before any of the 60? 70? 80? appointments I had over the last 18 months. Never did I meet an unfriendly receptionist. Every person behind a desk would welcome me with smiles, candy and reassurance if I looked like I needed it.  I remember one day I arrived late for an appointment. The receptionist said, “Don’t worry, sweetheart. You’re fine. It doesn’t matter when you show up so long as you always show up.”

I grew to almost like my time in the chemo chair. Friendly, caring people would bring me heated blankets, snacks and stuff to read.  I would turn on the heat, turn on the massage, snuggle under the warm blankets, eat my snack, and do my crossword puzzle. Now and then a kindly medical professional would do what was necessary to get medicine into me. Rarely did I feel any discomfort or fear. The time spent by nurses to prevent nausea, headaches, chills,  anxiety, adverse reactions of any kind demonstrated that these concerns were at least as important as giving me the drugs. No one could ever say that the staff at DFCI treats the disease and not the patient.

I don’t know how rare this kind of treatment may be. DFCI is the only place where I have been treated for this disease. But I feel lucky and grateful.

Thank you Hal for designing my treatment and for respecting  me and my family enough to explain the research behind the treatments I received. Thank you Carla for taking every step possible to minimize my discomfort and for distracting me with stories of life with young children. Thank you Anne, Jade, Maryann, Amy and every other nurse who struggled to tap my thin, “valvy” veins with the least amount of discomfort. Thank you Drs. Golshan and Hergrueter for looking for and removing  as much of the cancer as could be found, while minimizing pain and disfigurement to the extent possible. Thank you Dr. Harris for explaining the value of radiation based on all of the characteristics of my disease, and for designing a treatment that took all that information into consideration.  Thank you Varian machine staff for your efficiency, flexibility and good taste in music.  Thank you cleaning staff for ensuring the restrooms, kitchens, hallways, examination rooms are clean, germ free and safe.

And thank you to administrators and decision makers who decided to invest in services that were so precious to me during the last year and a half. Services such as parking spots on the valet floors for radiation patients, chemo chairs with heat and massage functions, push carts full of snacks and books, comforts for the poor people who accompany the cancer patients.  And thank you to the volunteers throughout the hospital offering support, advice and directions. What kindness, thoughtfulness and imagination went into these comforts.

Thank you, finally, to all of the research subjects and researchers who help advance the science of cancer treatment.

Although my most fervent wish is to never see you again, when my anxieties collect and begin to ooze through my worn out veins, I am soothed by the thought that you all are there at Dana Farber ready to make me feel better.

Farming Update

Well, it has been a while since I wrote to you all. Busy times at Stone Silo Farm. It's spring so outdoor chores begin to compete with work, exercise and medical appointments. It's all good, though. Well, it's all good for us. Things aren't so good for the chickens. The chickens have become a big part of our lives this year and so I feel that it is important to let you all know about life with chickens.

My husband likes the "free range" idea. By his definition, "free range" means "free." He lets them out of the coop, and  out of the chicken run where there are no fences, no walls, no roofs, and no protection from the hawks, the dog, the fox and the neighbors.  This arrangement is not ideal. They dig up the yard and the garden, and poop everywhere, and pretty much make huge nuisances of themselves. Meanwhile they tempt all those listed above to eat them for lunch. Except the genius dog who has learned to coexist with the chickens unless they flutter nervously which she believes warrants a little intimidation.

One day recently the husband heard some squawking in the yard, and when he came to check things out, he discovered a hawk with one talon holding down a chicken while it plucked out its tail feathers. Ah the brutal circle of life.  The husband, however, managed to save his bird by scaring off the hawk.

The result?

Half a chicken. I call her "Shorty". The husband calls her "Bobbitt."

Here you can compare a chicken with a backside next to one without.

Just in case you would like to examine this tragedy from  another angle.

And Shorty isn't the only one suffering on the farm.

 

This sorry bit of avian life we call Patches. She's the runt and is what one might refer to as "hen pecked". Little did I know that when my kids used to whine and nag this is the image that would have come to mind had we begun chicken farming sooner.

The good news is that all of these handicaps do nothing to slow down egg production.

Yes, my friends, we are a long way from  the sad, little egg days of yore.  Pretty soon I will be starting a blog about cardiovascular illness. Stop by if you want eggs.

The honey business is also doing well.

Don't stop by if you want honey. We're very stingy about the honey.

Some of you might be wondering what all this has to do with breast cancer. Absolutely nothing, I am happy to say.

Wishing you a honey-filled spring.

Speaking, Skiing and Inflating

Have I mentioned before that I prefer to write than talk? I feel safer and more confident when I write than when I talk. I am one of the decreasing number of people in the world who loves email. I would much rather write an email than make a phone call. And IMing and texting are miraculous accommodations for the socially phobic, introverts of the world.

Fortunately, my work requires more writing than talking. On occasion, however, I am expected to communicate orally using a microphone in front of people who are hoping that useful information comes out of my mouth. This is like requiring an agoraphobic to take public transportation in Mumbai. In such a setting I become anxious and inarticulate, if not nearly mute. To deal with this problem, I write down every word I plan to utter before an audience of greater than one, and commit it to memory. This strategy becomes a bit tricky if there is any Q and A involved.

Anyway, I am beginning to think that this is why I continue writing this blog. It reduces the need for talking. So if you are pissed that I haven't called in a while, you now know why.

If after this confession you are still interested..all is well with me. I just returned from skiing in Utah with my sisters and mother. I had been concerned that my achy joints would ruin this trip, but I am happy to report that they did not. To prepare my joints for skiing I spent more time at the health club. I think it worked. I had no trouble skiing every day of the trip.

In fact, I am now spending about 15 hours a week exercising. As previously mentioned, exercise may reduce my risk of recurrence. I hope this idea doesn't turn me into some kind of compulsive exercise freak who  can't live a day without sweat and muscle pain. So far, however, I think I have it under control. Moreover, I feel stronger, more flexible and cheerier. The only disappointment is that it does not seem to improve my figure. That is mostly because I no longer have a figure, but also because I eat like a horse. I eat like a herd of horses. All that stupid exercise makes me voracious. If you know of a healthy way to suppress appetite, let me know.

In other, cancer news, I recently learned the date of my last Herceptin infusion - April 30 - and none too soon. The difficulty du jour is finding a vein to pump the drug into. It becomes harder every visit. They usually have to puncture me three or four times before they find one that works. It hurts like hell because with each puncture they dig around to see if they can find the right spot for pumping. When it doesn't work the drug inflates my arm like a water balloon. Just describing it here is making me sick. I'm sure you're not loving the image either.

I hope you are all doing well, having some fun and getting your exercise. And please don't hesitate to write... or call.   xoxoxox

Exercise Program for Sickly Seniors - Part 2

Some of you might remember the yoga post? Well the exercise classes for the disabled saga continues. We have moved on from yoga for elderly cancer patients to water aerobics for the almost dead. So I've joined a health club. This is a way of spending money that I have never really understood.

Spend thousands of dollars so you can get in your car, drive twenty minutes, get on a machine, run/bike/climb stairs to nowhere for 45 minutes, take a shower in a germ-ridden, slimy-tiled room worrying the whole time that someone is going to stick their sweaty head in behind your brownish rubber curtain and scream at the sight of the freak that you have become. Then jog back to the car with your wet hair before it gets too crunchy in the frigid air, drive another twenty minutes, and two hours later you've finished your daily exercise.

What kind of sense does that make, when, for no money at all, you can walk out your door, run for 45 minutes where the scenery changes with every step until you're home and done? And, if you want, you can shower without fear of frightening strangers who come upon you unexpectedly (with the exception of your son who is very afraid of seeing anything but your face, and even then seems pretty disturbed.)

But this is a new world I live in and I've been told that exercise in the water, where all my aching joints are well supported, will be a wonderful thing. So, a few times a week, I find myself standing in a pool, up to my neck in lukewarm, chloriney water watching a fit, young beauty queen dance gracefully outside of the water oblivious to the near deadly difficulty of seniors attempting to swing their droopy booties under the water.

I will not forget the feeling of walking into the pool area that first day and seeing so many gray, withered heads floating on the water's surface, like so many time-worn mooring buoys, knowing that my head would fit right in. When did I become this person? It seems that it wasn't so long ago that I could convince myself that I still had a tiny shred of mojo left, but as I approached that pool in my navy blue speedo, on top of lumpy legs and under a raggedy head of hair, I realized that the mojo is nomo.

As with any class I have ever taken, there are those who float around in the back of the class, not paying much attention, chatting among themselves - and then there is me. Front, center and struggling mightily (with disproportionate success) to do everything I am told. "Kick your legs", "sprint through the water," "sprint backwards" (?), "don't use your arms," "don't use your legs" (if I was not underwater when this command was barely heard, I might have raised my hand to comment that when immersed in water one must move arms or legs, and preferable both, to derive benefit from the program. But fortunately, just before several of us sunk for good, the dancing sprite on the pool's edge sung out a new command to turn over on our backs and "do the can can".)

All the while, the terrible soundtrack of the nineteen seventies is pounding away in the background reminding us all of how long ago it was that we had danced to these tunes on dry land, in the beer sodden fraternities and student centers of our youth. What could possibly be more depressing? Lying in bed, in pain, and unable to exercise, I suppose.

Last one in will rot faster than the rest of us!

Bye Lil

Yesterday we said good bye to our old family dog. We are all very sad. She was an incredibly neurotic mutt with enough Border Collie in her to spend most of her time as a puppy herding the little kids by biting their heels. She would run switchbacks, bark maniacally, growl and chomp, and we loved her. Well, some of us didn't love her so much. My niece, for example, who was one of the smallest, daintiest little babies ever born, once found her head inside Lily's mouth. It was one of the funniest things I have ever seen, which may sound a little harsh, but I was pretty sure that Lily would not close her jaw and chop off Claire's head. My mother hated Lily too. Lily always knew which one in the crowd she could most effectively annoy. She would immediately find my mom, stick her nose in mom's crotch and mom would struggle to maneuver around the furry, matted obstacle.

Lily was so annoying. She barked incessantly. She smelled. Her fur was the thickest covering of any animal that I have ever felt and was usually matted, sticky with pine sap, and knotted with burrs, twigs and leaves. She shed great balls of oily, sticky fur. She had many nervous habits some of which in her early years required that she wear the cone, which meant she scraped everyone's legs, knocked stuff over and looked sillier than ever.

In recent years, Lil moved more slowly, had trouble sitting down and standing up, but once she was up, she was her old self, barking away, stuffing her nose in your crotch, and begging for a butt massage.

The great thing about Lilabether, as I sometimes called her, was her dignity and doggy arrogance. I will never forget a day, when our other dog, Pepper, was a puppy. We were teaching Pepper how to fetch. We would throw the ball, Pepper would retrieve it, and if she brought it back to us we would go nuts with praise. Lily was watching us with an air of great superiority and boredom. Finally, after many throws to Pepper, Lily got up, retrieved the ball, brought it back, dropped it at our feet, and sat down again. She had never retrieved a toy before that day and never did so again. She merely wanted to demonstrate what a stupid, amateur trick it was that the silly new puppy was performing.

I bought Lily shortly after my husband and I had separated. The weekends that the kids spent with him were so terribly lonely for me that I decided a dog might help to fill the time and add some noise to the quiet house. She was such a small. white fluff of a thing. I would carry her around, tucked under my arm, while she nibbled at my hand until it was raw. At puppy kindergarten, she was so out of control, with biting and barking and squirming, that I remember crying with embarrassment during one class. My vet would often advise me to put her on Prozac, but I never did.

In her final months she was deaf and barked even more frequently, often in the middle of the night for no reason we could ever figure out. My husband or I would drag ourselves downstairs, reminded of the days when our children were infants, and groggily try to figure out how to shut her up. We would drag ourselves back upstairs, muttering murderous epithets with every step. We would fantasize about getting a gun to kill the squirrels, or the bunnies, or the sparrows....or Lily.  (For the record, we never fantasized about murdering our babies.)

My kids learned to love Lily with a kind of fierce loyalty. She was such a pain in the ass, and not the kind of dog that people would find lovable, but the kids were always loyal and protective and affectionate with her. They objected when we talked about murdering her.

Then came the day when we murdered her. She seemed to be having trouble breathing. Each breath labored and painful sounding, she was foaming at the mouth. She was sad and weak and miserable. We had been to the vet a couple of days before and the vet warned us that we should be prepared to say good bye. We thought we were prepared. We brought her in and said good bye. My husband stayed with her for the injection. I returned to the car. We are so very, very sad. She was such a dignified, intelligent, irritating presence in our home. She leaves an enormous hole.

Pepper, the now grown puppy, hasn't reacted too much. I let her out this morning after breakfast. Lily used to eat her breakfast more slowly than Pepper. So Pepper would go outside and sit on the porch waiting for Lily to join her. Pepper liked to follow Lily around the yard to eat her poop. Pepper didn't wait for Lil this morning. She just walked off the porch and sniffed around slowly and thoughtfully. I do not know what she is thinking.

Good bye, Lil. We miss you, we love you, and we thank you for much happiness and laughter.

Christmas #1

New season, new year, new look. The winter scene pictured in my new background struck me as soothing, which is helpful at this time of year.

On the morning of January 2, 2011 I was lying in bed feeling guilty about all of the eating and drinking I had done through the holidays. I thought about how such a lifestyle can increase cancer risk, and I found a lump in my right breast.

You know how cancer statistics refer to the five-year survival rate? I've been wondering lately from what point do you start counting the years. The day you find the lump? The day you estimate that the lump was born? The day of diagnosis? The day you start treatment? The day you finish treatment? Am I surviving right now? I have a friend who refers to post-cancer diagnosis as a period of "thriving".

To survive:
verb (used without object)
1. to remain alive after the death of someone, the cessation of something, or the occurrence of some event; continue to live: Few survived after the holocaust.
2. to remain or continue in existence or use: Ancient farming methods still survive in the Middle East.
3. to get along or remain healthy, happy, and unaffected in spite of some occurrence: She's surviving after the divorce.

verb (used with object)
4. to continue to live or exist after the death, cessation, or occurrence of: His wife survived him. He survived the operation.
5. to endure or live through (an affliction, adversity, misery,etc.): She's survived two divorces.

To Thrive:
verb (used without object)
1. to prosper; be fortunate or successful.
2. to grow or develop vigorously; flourish: The children thrived in the country.

None of these definitions seems exactly right, but if I had to pick one that best suits my situation, I might go with  "survive" definition #2...Amy remains or continues in existence or use. I guess I have been surviving for over fifty years.

Well, that's not too helpful.

I hope everyone had joyful holidays. Mine were fairly joyful. The highlight was seeing twenty members of my family sitting around a single table in my own kitchen each with a plate of cold food in front of them. I was wishing that the food was hot, but the only way that could have happened is if there had been fewer people there taking turns loading up their plates. The cold food was a fair price to pay for a super crowded Christmas dinner table.

I am now thinking about our New Year's celebration. I guess it will be good to finish 2011 and start 2012.  2011 wasn't so good, but it wasn't so bad either. I learned a lot: about how to be a good cancer patient, about setting priorities, about how I am not alone and that I have dear friends and family members who are willing to make sacrifices just to help me out. I learned that I have lots more good luck than bad. I learned that you can lose members of your family, parts of your body, a lot of your energy...and still find stuff to laugh about. I learned to be even more grateful than ever for money and education which are mighty helpful things to have when you are sick, and that probably the most useful thing I could do with the rest of my life is to help other people who don't have those resources.

My New Year's plans include dear friends, precious family, food and drink, though in smaller amounts than in years' past. I will celebrate having earned some wisdom for living a full and happy, second(?) year of survival.

Sending you all lots of love and wishing you a peaceful, joyful and healthful New Year.

Holiday Blues and Returning Daughter

Hey Friends,  

Everyone who is feeling overwhelmed by holidays, family, work, life, and death raise your hand. I knew it. All of you. And because I am the one doing the typing, I am going to tell you all about my holiday stresses. There was Thanksgiving. Lots of family - minus one major member, the daughter - around for a few days. Then my mom's sister died and we went to upper New York to visit with family. Then  a couple of weeks of more intense work than usual leading up to a conference in DC hosted by my organization. And throughout there have been many hours of physical therapy, doctor appointments and driving back and forth from those things. Whine, whine, whine.

Maybe because I've been busier and taking on more stuff, I have been having trouble sleeping lately.  Things on my mind:

• Recurrence: I can't help it. I keep looking at the data. Scary. When I am alone I spend a mentally-ill amount of time researching this and I am alone this whole week so...
• Twitter: twitter works on the principle of egomania. I hate to break it to you, but for the most part there is nothing interesting about your 140-character thoughts, so keep them to yourself. (I know what you're thinking - people in glass houses...) On the other hand I get it for marketing purposes or important news. Things like, "a million copies of my new book are now in books stores all over the world." Or, "doctors discover a cure for cancer." Things like that people want to know about immediately. But things like, "what you are is what you have been. what you'll be is what you do now" just isn't. [ This paragraph uses 608 characters.]
• Current Health: On the decline. This horrible medicine I am taking, arimidex (which is an aromatase inhibtor that works by reducing the amount of estrogen my body makes) is wreaking havoc on my joints. When I get out of bed or out of a seat after sitting for a while, its takes a painful minute or two to straighten my back, legs, and shoulders. This I have gotten used to. However, in recent days my joint pain is interfering with sleep and exercise. My knees are up in arms, so to speak, when it comes to running, and even a long walk can cripple me for the rest of the day. When I think that I am to be on this drug for 5 years, I feel discouraged...until I remember that I should feel lucky if I am around long enough to take the stinkin' drug for 5 years...

So, as you can see, I am feeling a little sorry for myself this holiday season. BUT! My precious daughter who has been in Ghana since August 26 is coming home this Wednesday. I cannot believe that I lived through almost 4 months of not seeing my own daughter! My daughter! My heart, my soul, my blood, my lungs, my genes (poor dear)...my darling, my sugar cookie, my pickle brain, my chicken bosom (please see post #1...really, is this so much worse than most twitter posts out there?) 

Right now my daughter is traveling with her papa around Ghana. They are with a professional guide, but my lucky husband is also enjoying the novel experience of being guided by his own daughter. And not just any daughter, but a daughter who still uses a GPS to get around the town she grew up in. There she is, resident in a rough and tumble African country, showing her father the sights.  How did that happen? My collicky, premie baby, 4.5 pounds on entering this world, nevertheless scored a 10 on the Apgar scale. She's been scoring a 10, in spite of herself, ever since. When recalling her infancy I like to say that if she was awake she was whaling. As a teen, if she was awake she was finding fault with herself. As a young adult, she is mostly just awake, struggling mightily to absorb, assimilate and write about all that she learns every day. Such a beautiful, difficult baby. Such a beautiful, challenging 21 year old  who just completed a 70-page paper about the cultural and political significance of the Ghana Dance Ensemble, guiding her father through a colorful, chaotic, and lush country that appears, from a distance, to vibrate with music and stomping feet.  What mother would not feel cheered by the prospect of a reunion with such a daughter?

                  

Thanksgiving #1

This way we can count how many Thanksgivings I have post diagnosis. A little too morbid for this rainy Thanksgiving eve? Not really. Each one I have is further proof of all that there is to be grateful for. I guess that goes for all of us.

Things I am grateful for in no particular order: husband, daughter, son, mommy, sisters, dogs, you, chickens, old timey music and its progeny, turkey, nieces, nephews, sweet potatoes, summer tomatoes, fall apples, apple, cherry and maple trees, horse manure, fireplaces, fleece, reggae, wine, chemotherapy, oncologists, Charles Dickens, nuts, good fiction, the Sunday Times, my legs when they take me on long walks in the woods, pasta, space heaters, washing machines, photocopy machines, Skype, computers, WBUR, my hair, my teeth, money, airplanes, mountain views, the first amendment, sleep, mocha chip ice cream, clean water, people who make me laugh.

That's all that occurs to me at the moment. Please let me know your things.

Wishing you a delicious, cozy Thanksgiving with people you love.

Poll Results and Health Update

Well. my friends, I am sure that you have been in terrible suspense all week wondering how I will shape my future drinking habits in light of our poll and recent studies. The results are interesting:

• 8 of you voted
• 1 person voted for 0 alcohol consumption
• the others were split on how many drink per week I should have, and
• 3 support the use of illegal substances while 5 do not

So here is the analysis. 

• the article was viewed 62 times. 
• 13% of the viewers thought it worth voting. 
• 87% could give a shit about how much I drink
• 1 person is really concerned about my well-being (or interpreted another way, one person wants to see me miserable)
• a healthy majority (62%) is opposed to illegal substances

So, there you have it. I continue to have insufficient justification for altering my habits. YAYYYY!!!!!! Man, I'm ready for a drunken celebration.

Ok. Enough of that silliness. In real life, things are okay. I've been dealing with what they call "lymphatic cording" which is caused by having no lymph nodes under my right arm and results in an uncomfortable and revolting feeling of tightness and palpable "cords" under my skin that hurt and reduce my range of motion. I've been going to physical therapy twice a week to deal with this issue which is time consuming and somewhat agonizing. My physical therapists joke when they see me, "time to play the guitar!" I feel nauseous just thinking about it.  I am seeing my surgeon next week to make sure that it isn't the next sign of my premature demise.  

In addition to this development, I am back to work to an increasingly stressful degree. Perhaps I should do another poll on the topic of my career. I think that there is real possibility that work causes cancer. Since the alcohol poll I've been thinking a lot about all the other things that cause cancer:

• smoking
• plastic containers
• water bottles
• celery
• the stuff that makes paper towels white
• birth control pills
• pesticides
• pollution
• radon
• chemotherapy
• radiation
• toilet bowl cleaners
• Tide
• Crest
• flea collars
• carpets

and on and on.

Adult with Breast Cancer Risk Behavior Survey

I am very sad that drinking alcohol causes cancer. I really like drinking alcohol. Even when I hate the taste, I always love the warm feeling of comfort and well being that it brings. The latest study shows that even as few as four drink a week may increase your risk of getting breast cancer. And I'm not talking vodka martinis, my friends. I'm talking vodka martinis AND that wimpy glass of chardonnay that we middle-aged suburban ladies are so fond of, AND everything in between.

I do not believe that I am alcoholic for a number of reasons:

• I never have a drink before 5:00 PM...yea, yea, yea, I've heard the joke...east coast time 
• I never drink alone
• I mostly confine my drinking to Friday and Saturday nights with a group of friends
• I usually do not drink more that 2 or 3 glasses of wine in an evening
• I do not see my aggressive efforts to get that group of friends together religiously every freakin' Friday and Saturday nights as cause for concern

So I spend a lot of time considering the impact of this bad news on my risk of recurrence, or more candidly, on my risk of dying within the next couple of years. I think that I have been aware of studies that indicated that there is an association between breast cancer and alcohol consumption for at least the last ten years. I never did much in response to this knowledge except feel guilty every time I had a drink. In fact, it was my guilt about drinking over the holidays that inspired me to do a punishing breast self exam on January 2, 2011 that got this blog started. 

So it's no surprise that I am certain I got breast cancer from alcohol consumption. You would think that this theory would put the kibosh on drinking, and through chemotherapy it did, mostly because I couldn't stand the taste of it then. Sadly, once I finished chemotherapy, my taste for alcohol returned. 

So I thought it might help to analyze here, in this public place, my risk of recurrence in connection with my alcohol consumption. A fairly pessimistic estimate, I think, of my risk of recurrence is about 20%  (my doctor tells me it is more like 8%, but I think he's just trying to cheer me up.) According to the latest study, drinking an average of 10.0 to 19.9 g of alcohol per day (6 to 12 drinks a week) results in a 22% increased risk of developing breast cancer. Although my average consumption is lower than that, I will continue with the worst case scenario approach. So adding the additional risk of .044 brings my personal risk of recurrence up to about 24%. So what do you think? Check out the new poll on the right. A couple of additional considerations to keep in mind as you place your votes:

• there is no evidence yet that discontinuing alcohol consumption lowers risk
• if I can't drink, life isn't worth living
• the anxiety that I feel with each drink might increase my risk of recurrence
• I am NOT an alcoholic 

Autumn Yoga

Happy Autumn, my friends. I've already written about changing seasons and their nostalgic associations so I won't do that again, but wanted to point out that I've selected a new background for the blog to celebrate the season. Too clever, I know.

So I thought I would give you a sense of what a yoga class with cancer patients is like. I used to like doing "hot yoga" which is basically fast yoga in a room heated to about 98 degrees. I was the least skilled at it, but it was so efficient. I got the benefit of yogic breathing and stretching in addition to the "cardio" that came from trying to keep up with the pace, and mimicking positions that hurt like hell and couldn't possibly have been good for me. But when I was in "downward dog", the resting position, I could see the sweat drip on the mat from body parts that I never knew could excrete sweat. Gross but gratifying.

Yoga with cancer patients is a different experience. I arrive at class five minutes late. No problem. The ladies (it is all ladies - with breast cancer) are still signing in, pulling out mats, strolling back and forth to the bathroom, the water fountain. Fifteen minutes after the class was scheduled to start the group is lined up, standing on their mats facing the instructor. The instructor talks for 10 minutes about the importance of breathing. The instructor tells us to swing our arms around our bodies to enjoy the "stretch" that comes with the slightest twist of the torso. Someone farts. We are instructed to pull up a chair, have a seat, breeaaaatttthhhhh. Stand up, grip the back of the chair, make sure we are well balanced, then (this is the climax of the class)  lean over to "stretch" our hamstrings. Someone farts.

Someone asks, "can you write down these steps so that I can do them at home?" Someone else says, "what a good idea! I only do this "exercise" in class. I should really try to do it more often." Someone farts.

Then the following conversation takes place:

"My daughter-in-law has been doing yoga for years, and she looks fabulous."
"Oh, is that the daughter with the twins?"
"Yes. I spent the afternoon with them yesterday. They are too funny."
"Did I tell you? My son's wife is due in December!"
"You must be so excited."
"Oh, I am. I hope I live long enough to meet the baby."

To those of us still bent over our chairs, the instructor says, "stand up straight and swing the arms to release the muscles, and breeaaaath." "Now it is time to lie down on our mats. Raise the knees and breeeeaaaaath." Relax your toes, relax your ankles (huh?), relax your knees, relax your buttocks, relax your pelvis (once again, huh?), relax your lower back, your stomach, your shoulders, your neck (you'll note one body part we needn't bother relaxing, since for most of us that body part is in a landfill somewhere).

Loud snoring is heard from the back of the room. Someone farts.

Farming Update

Dear Blogees,

BIG NEWS ON THE FARM!

Yes my friends, the hens have blessed us with...an egg. Just look at that thing! Is that beautiful or what! And for a first try it ain't too shabby. The picture below gives you some perspective:

Our is the little one on the end. Stop laughing! Those other, stinky, commercial ones, (though organic, free range, grain fed and whatever) are Extra Large. I would say that our egg would weigh in as Regular? Medium? Who knows. But that is one nice egg, you've got to admit. Check out the artful little speckles on one end.

There's just one problem. What should we do with it? I've got zero interest in eating that thing. I know where it came from and it's not a pretty place.

The husband has a web cam in the coop and he knew that the girls were getting close. So we both spent more time than we should have today checking out the goings on in the coop from our desks. I swear, we saw that girl sitting in her little box (lower left), prepare her little nest, and squat that thing out.

We are very proud egg guardians. I am especially proud of the husband who put in an inordinate amount of labor, love, and money to deliver that egg. When you think about it, that is one precious egg. (I'll have to google cryonics for chicken eggs...) Those birds better get busy if they want to even begin paying us back.

On another matter. I apologize for my last post. I "published" it by accident, unfinished, unedited, un-illustrated. But I guess it doesn't matter among friends.

Be well.
Love, Amy