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!