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?