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

Still Here

Yes, my friends. I ain't dead yet. I realize it's only been a week or so since my last post, but don't forget that in addition to cancer, there are buses that could run me over, criminals who might slit my throat, snakes that if they came too close could give me a heart attack, and all kinds of other dangers out there that could knock me off, or you off, for that matter.

Don't mean to bring you down. I am feeling rather cheerful this morning, really. The annual physical went okay yesterday, although the suggestions for additional medical consultations could pretty much fill all my time:  dermatologist, bone density, genetic testing, questions for radiologist, questions for oncologist, future appointments with her. Add to that all of the consultations that will be required for exploring and possibly implementing breast reconstruction...you begin to wonder about quality of life after cancer diagnosis. Maybe I should take a walk across the Mass Pike.

Still sounding a bit negative, am I? Okay. This time I will really try. I am looking forward to the day. It is Saturday. The dogs let me sleep in until 7:30. I don't have to see any medical professionals today. The sun is shining. I am looking forward to a fun evening out with the husband. Maybe there's an egg in the chicken coop. My plan for the day is to rip out all of the withering vegetable plants from the garden which will make it look tidy and fertile. (Sometimes I prefer a garden that has nothing in it, to one that is filled with messy, dirty plants.) Tomorrow, good friends are coming to visit.

Phase IV - Life

Dear Friends,

Last Friday was my last day of radiation. Another milestone passed. This week I have no doctors' appointments. I can't say that my feeling is one of pure joy since there is plenty to worry about if I wanted to. For the most part I have been successful in not focusing on the uncertainty and the 10% chance that there are still some devil cells hiding out, regrouping and steeling themselves for the slaughter. But now that I am not receiving very frequent treatment it may be harder to push those thoughts away. On the other hand, every three weeks for the next seven or eight months I will receive a mini infusion of chemotherapy, and every day for the next five years I will take an oral form of chemotherapy. I will also see my oncologist every six weeks. So my treatment isn't exactly over, which is some comfort.

The one thing that doesn't happen with this cancer is regular CAT scans - at least at this stage. This is a relief. I guess they figure that no good will come from discovering renegade tumors after all this treatment. If those nasty, little cells were able to survive eight months of chemo blasting, we might as well give up since no amount of early detection will save me.

I have my annual physical next week. Remember the jealous internist who was sad about missing all the cancer drama? Well she's making me come in the first week of October. I know it is silly, but I am terrified of that appointment. I am sure she will find a new cancer threat to worry about. Cancer, cancer, cancer. Every health professional on the planet is so eager to find cancer: the internist looks for lumps and tests your blood hoping to find whacked out readings that might suggest there are tumors in your kidneys, your liver, your intestines or your blood. The gynecologist also enjoys finding internal malformations and taking cells out of your personals to look for cancer. The dermatologist looks for god-only-knows what since every blemish on the body looks like cancer to me. Even the dentist likes to do a kind of mammogram of your head to look for tumors in the jaw or some crazy place. There is no limit to the creativity of cancer to find new body parts to chew up. You got to admire it, really. Cancer has every characteristic that my father used to try to grind into me: determination, tenacity, guts, imagination...no wonder it is so successful.

So the question is what to do with this blog. The original idea was to keep you all posted on my progress. Now that the treatment is pretty much done and there is nothing to do but wait to see how long I live, there won't be much to report until something terrible happens, in which case I may not feel like writing about it here. On the other hand, if I don't write this blog you might think I'm dead. You could just assume I am alive until the husband posts an epilogue on the blog. Another option is for me to write occasional, boring updates on my gloriously, humdrum existence. Lets go with the last option...for now.

Thank you all for supporting me through this ordeal. Your help with meals, gifts, companionship and kind words made me feel more lucky than unlucky. Thank you also for reading and commenting on these posts and for letting me know that now and then they made you laugh.

Until the next time I have something to say...

xoxoxox

The End of a Season

I read a poem every morning, thanks to The Writers Almanac sponsored by American Public Media. Today it was Robert Frost and it caught the mood of what I wanted to write about in this post.

Reluctance

by Robert Frost

Out through the fields and the woods
And over the walls I have wended;
I have climbed the hills of view
And looked at the world and descended;
I have come by the highway home,
And lo, it is ended.

The leaves are all dead on the ground,
Save those that the oak is keeping
To ravel them one by one
And let them go scraping and creeping
Out over the crusted snow,
When others are sleeping.

And the dead leaves lie huddled and still,
No longer blown hither and thither;
The last lone aster is gone;
The flowers of the witch-hazel wither;
The heart is still aching to seek,
But the feet question 'Whither?'

Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,

And bow and accept the end
Of a love or a season?

"Reluctance" by Robert Frost, from A Boy's Will and North of Boston. © Penguin, 2001. Reprinted with permission. (buy now) 

September. The sad music of the nighttime crickets brings back years of memories of lying in my childhood bed the night before the start of a new school year. I felt so sad about the end of summer in those days. I thought of summer as a time when I didn't have to worry about homework and could play with friends any day of the week. It wasn't that I disliked school so much, but that last night before the new school year began I imagined I would feel homesick that next day, that I would miss my mom and swimming and playing "My Side of the Mountain" in the woods. This is a feeling that is ingrained in me. Every September I am haunted by a back-to-school anxiety and "reluctance" even during those few years of my life when the crickets heralded no change to my routine.

So why does the end of summer make me feel so blue? Might it be the loss of long and lazy summer days? That is NOT it. The pace of my summer day is closer to that of a labor camp than that of a day at the beach. Hours spent pulling at the billions of stinkin' weeds which threaten to strangle all living creatures on my property, or dragging two miles of hose around the yard with arms connected to a recently mutilated torso, are enough for me to long for snow-bound, winter days trapped in my office.

Is it the loss of having my darling children near me all day long? Those sweet little voices chiming pleasantly throughout the house atop of summer breezes floating through the window screens? I don't think so. Take for example the greetings I am likely to receive after the daily trip to the grocery store that is required when my voracious offspring are in residence. "Mommy! You forgot to buy that critically important, incredibly exotic, habanero, tequila spiked, roasted chipolte hot sauce I need. I've asked you to buy that five times already!" Or, "Don't tell me you forgot to go that store that is about 20 miles out of your way to buy that bottle of probiotic organisms that costs about $90.00 but that is absolutely critical to maintaining the natural balance of my intestinal microflora?"  No, I don't think it is the cheerful family banter that I miss so much.

Perhaps it is the shared pastimes of summer that I miss. Such as when my darlings "share" with me their gigantic towers of laundry that they have been saving up until they have worn their last pair of 13-year old underwear twice. Probably not. I feel like passing out when I see their sheets. My daughter's look like several people were slaughtered with a dull knife in her bed. And my son's look (and smell) like they had been used to clean out the chicken coop.

Could it be the colorful clutter that charmingly adorns their bedrooms and that makes me shudder with repulsion every time I accidentally allow my eyes to shift in their direction when I walk by? Not likely. It took me weeks to remove from their rooms the empty seltzer cans, dirty coffee mugs, shreds of tampon and razor packaging, crumpled sheets of notes on topics like "Dance and Society: 1960 - present" (Jesus, what are we paying for!?) or "World Politics" (huh?), and most horrifying of all, a large, albeit unopened, box of condoms.

So I am reminded of another "poem" of sorts - one perhaps that my daughter might have "danced" to last semester....

One less bell to answer
One less egg to fry
One less man to pick up after
I should be happy
But all I do is cry...
Songwriters: Hal David;Burt Bacharach

Phase III - Radiation

So I haven't told you about radiation. I don't like it. Before I started phase III of this adventure, I had the impression that radiation was a piece of cake by comparison to surgery and chemo because it didn't hurt, it didn't make you nauseous, it didn't make you bald, and it didn't mess up the nerves in your hands and feet. But, as it turns out, it's not that much fun.

My chemo experience includes sitting in a chair that looks like something you might test drive at a Brookstone store in the mall, complete with massage functions and heat. The minute I sit down, the staff gently covers me with a heated blanket. Volunteers come round to offer reading materials, snacks and drinks. While I sit enjoying the heated massage, I read an absorbing novel, like Ann Patchett's State of Wonder, for example, which takes me far away to a land without cancer, needles, chemicals, death (well, perhaps I could have picked a better example than a book about human subjects experimentation, but you get the point...).  From an upper floor of the hospital I have a million dollar view of the Boston skyline through clear, enormous windows. Now and then someone comes by to check on me, or to switch the bags of medicine (I no longer think of it as poison - how can I?) It's a little like flying first class. You don't really want to be spending all this time cooped up in an airplane, but if you have to do it, it's nice be treated like a VIP.

By contrast, my radiation appointments are in the basement of the hospital, which has me thinking that the stuff they do in that department is so dangerous they need to keep it underground.  The procedure requires that I strip down to my waist and put on one of those detestable hospital johnnies. I then sit in a waiting room, along with other ladies wearing ugly johnnies. This part of the ordeal brings back terrifying memories of mammograms. When my name is called, I walk into a dark room with a giant, spooky machine that looks like some kind of prehistoric monster. I lie down on a hard table that has a funny bump in it that my butt is supposed to rest against, but always seems to hit in just the wrong place. There are at least four technicians scurrying around the room officiously. One of them removes the johnny from the part of the body that is going to be radiated. They call out numbers to each other, they jerk my body around to line it up properly. They draw little blue marks all over my skin. They talk and move as if they are conducting a complex military maneuver. Then they all scatter from the room, leaving me to take the "heat" alone.

After the technicians are safe and sound in another room, I hear strange noises that alternate between those associated with the moving machine and those of the radiation beams shooting out, I guess. I'm too freaked out to watch what is going on. I lie there with my eyes closed knowing that parts of me are in the line of fire. I worry that the movement of my chest as I breath will result in collateral damage. I try not to breath. I am so oxygen deprived I feel the need to take a really deep breath but don't. I feel like passing out. And then it is over.

If I were to look on the bright side, however, I appreciate that the treatment itself takes only about 15 to 20 minutes most days. And, so far, I have no side effects, although I am told to expect burnt skin and fatigue.

Yesterday, my treatment was cancelled. The radiation machine was broken. Apparently getting your radiation machine fixed is about as easy as getting your refrigerator fixed. All day long the radiation technicians were calling me giving me updates on the repairs, the likelihood of getting replacement parts, the vagaries of the radiation machine repair people's schedule... In the end, they cancelled my appointment for that day.

The machine was still not fixed this morning. The radiation staff seemed stressed.  At 7:00 AM, I got a call from one of the technicians telling me that the machine was still not fixed. I got the impression that it would be super dangerous if I were to miss another day. I started to panic and began thinking that I should look around for another radiation machine that worked. Before I got too far with that strategy, I got a call that the machine was operational, and I should come in.  I sped into town, practically starved for my next dose of radiation. Shoot me up, monster machine.

Post Chemo Milestones

I have reached a new milestone in my post-chemo recovery. I am back to running 3+ miles most mornings. I have been a "runner" since I was a sophomore in college (a very, very long time ago.) I use quotation marks for this word, "runner," since by an actual runner's standards, I am a walker. Before my diagnosis, I was "running" about 10 minute miles. I am now "running" something close to 12 minute miles. If you were driving by and saw me from the rear, you would see a short, lumpy woman shuffling like a duck in a hurry, while shifting the weight of her upper body in a sort of regular rhythm, thereby creating the illusion of a forward momentum that is faster than a walk, but it isn't.

My route includes one very long, very steep hill. Yesterday was the first day that I completed the "run," including the hill, without slowing to a walk (which might be closer to a crawl?) This feels like progress to me.  Another step back to my old self.

In other news, I shaved my legs! Yes, my friends, chemotherapy is like Nair for the whole body. But it's marching back in force. Even my head has a bit of fur on it.

Almost time to ditch the bandannas, hats, and wigs (which I never wore)...I can hardly wait.

Rare and precious animals

So one reason that I have not been posting lately is that I've been struggling with computer challenges, and before that I had the privilege to be traveling. I want to share a little of our adventures with you.

In July we we went to the Galapagos. Not surprisingly, it was a unique and wonderful experience. As advertised, what makes the Galapagos truly amazing is the fearlessness of the animals.

For example, you can lie on the beach and cuddle up to a sea lion...

You can just about trip over a 150 year old, 1000 pound tortoise.

You can peer at the underside of an albatross and see its newborn.

You can hang out with the Christmas Iguanas...

You can eat lunch with sea lions and pelicans...

Please sir, may I have some more?

As a breast cancer patient you can amuse yourself with silly jokes about the blue-footed boobies.

Or the red-footed ones...

Or the multi-colored ones...

Or even the barefooted ones....

You can coo at a fluffy, baby albatross...

Or take pride in completing a steep hike with your mom...

You can admire the scenery and figure out better ways of disguising your baldness.

You can wonder at the unfathomable depths of the Pacific ocean and worry about how you might rescue your mother should she fall in it and get caught under a diving porpoise and a zodiac motor.

You can boast to your friends about having snorkeled with penguins...if you did...

And occasionally, if you are really lucky, and quiet and savy about approaching the rarest and wildest of the earth's creatures, you can experience exceptional joy and beauty.

Making it Look Easy

Man! It's been a month since my last post. I have lost all ability to manage my time. It's been a busy month, however, so I hope you'll cut me a little slack. Here is the first in a series of updates. This entry was started about three weeks ago.

On July 20 I had my last, regular chemo infusion. I will continue to receive an infusion of a single "maintenance" drug, they call it, that has no obvious side effects (other than heart failure), every three weeks for another 8 months or so. So we are now on official hair re-growth watch. It will be several weeks before I start to see or feel any improvements. I am looking forward to touching things without feeling an irritating and chafing tingle that sends bristly shivers up my spine. I look forward to losing the yellow color and fungal appearance of my fingers and toes. I imagine having a reduced appetite and increased metabolism off steroids. Oh...and I'm hoping for a cure for my cancer.

My doctors like to tell me that I'm making BC treatment look easy. This comment makes me glow with pride, as if I had done something really remarkable and accomplished. It also makes me feel that every complaint I might feel like expressing would contribute to a lower grade on my cancer report card so I stifle them. This stoicism has its pros and cons. On the pro side, my doctors, my family and my friends tell each other in my hearing how well I am doing, which, of course, makes me feel very well. On the con side, my kids don't clean the dishes.

The logic here is that if I were to act sicker, maybe my kids would do more chores around the house, or treat me with sympathy and kindness.

As it is, my son makes fun of me just like he always has, especially when I try to grab a piece of him for a snuggle.  He says things like, "stay away from me you freak," "you look like a mental patient," "you're ugly and you disgust me." Now I know that some of you are appalled by such rudeness and disrespect, but for some reason I find this outrageous rudeness funny. So I laugh and that encourages him to further abuse. But now and then I think I should take some offense as an overweight, bald and bosomless woman about being called ugly and disgusting. I should defend bald, bosomless women the world over against prejudicial outbursts such as these.

My daughter ignores me as usual and continues to have no inhibition about letting me know how idiotic and useless I am as a parent and adviser.

Sometimes I worry that I should be reprimanding my children for their disrespect, and that I should be teaching them humility and empathy. But then I think there is very little I can do anymore to shape the behavior and values of my 19 and 20 year old children, so I sigh, and then one or the other will ask with alarm,  "what's wrong? "do you feel okay?" Best to be jocular and make it look easy.

Summer Celebrations and My remains

Dear Bloggees,

It's been a while since I wrote a letter to you, which was the original idea for this blog, you might recall. We had a very fun July 4th weekend in Maine with my family. Eighteen of us jammed in my mom's, not very large, summer home on an island off the mid-coast of Maine. Utter chaos. The group includes many growing boys and an average size refrigerator. Grocery shopping, cooking, kitchen cleaning, trash removal and dealing with the plumbing take up the greater portion of our "vacation" time as a family.

The sleeping arrangements usually offer opportunities for adventure and diplomacy. The results this year were that two of the party slept in a tent and two or three in boats. The husband and I scored a bedroom. Yet another perk of BC.

It's a beautiful place. The house sits on a hill overlooking Penobscot bay. The yard is fringed with lilies, rosa rugosa, raspberry bushes and wild phlox. The husband and I like to pull our Adirondack chairs to the far edge of the lawn and watch the field mice and sparrows darting about. Sometimes we read there. But since there is usually a fierce game of badminton or an aggressive gossip session going on behind us, it's hard to get too immersed in nature or literature.

We've gathered at this place annually for many years. There is always some family friction to deal with and a lot of frustration in trying to do the stuff you have imagined you were going to do before you got there. But we manage to produce precious memories most of the time, so we always return. This year the memories included the combination of inept badminton played by the adorable 14-year old girls alongside the practically professional badminton played by teenage and 20-something boys; a lobster feast and silly, poetic tributes to my mom whose birthday we were celebrating; a bike ride that included a tire blow out so became a bike walk; a dance party that featured the husband's "gator" and the exotic, athletic moves of the daughter; a slow walk around the point; and cutthroat Pictionary.

The Bay is the focus of a lot of activity up there. My family likes to sail and kayak in it, and eat the lobster and mussels from  it. I only like to spend time in the bay when the temperature is in the 80s and the sky is clear, so almost never. My father loved sailing in the bay. He was a late comer to sailing and was truly a hazard to the other boats that might have the misfortune of sailing too close to him and of course to his unlucky "crew" (usually some of us). After he died, (in a manner unrelated to his lack of sailing skills), we tossed his ashes in the bay thinking that was where his remains belonged. I often wonder about that. The water is so cold, the air is damp and foggy, and the noise of the lobster boats incessant. I wouldn't want my remains floating there.

For the record, I would like my remains in a place where you can't hear motors. I am so tired of the sound of cars, planes, boats, guns (yes, guns - we live near a shooting range), lawn mowers. Plant me on a hill away from the noise, please.

Well, I hadn't meant to get melancholy, but sometimes that 's what this blog is for. I hope you all had happy July 4th breaks and have more summer fun to anticipate.

Be well.

Love,
Amy

A New Nickname

So it is time to concede that Chemo Brain is a real problem and I have it. The husband has taken to calling me CB (which, he reminds me, also stands for chicken brain.) I did a little research on Chemo Brain, and learned about some common symptoms.

• Forgetting things that they usually have no trouble recalling, memory lapses
• Trouble concentrating, can’t focus on what they’re doing, have a short attention span, may “space out”
• Trouble multi-tasking
• Taking longer to finish things, disorganized, slower thinking and processing
• Trouble remembering common words (unable to find the right words to finish a sentence)

So a typical day in the life of CB goes something like this.

Deaf, elderly dog barks. Barks again.  Barks again. Not with any particular rhythm or frequency which makes it even more irritating. Each bark is a grating surprise. CB squints at the clock. 5:30am. CB pulls a pillow over her cold, bald head to muffle the noise. Husband gets up to manage the dogs. 

Two hours later, CB gets out of bed.  Unused to her new cancer corpulence, CB waddles stiffly into the bathroom. Looks at herself in the mirror. Shuffles a bit faster out of the bathroom. CB stands uncertainly in the middle of the bedroom. What to do next? Dress? Wash up? Drink a cup of coffee? Ten minutes pass. CB scratches her mosquito bites. CB's feet start to hurt. CB returns to bed. CB thinks to herself, today is going to be a productive day. No wasting time. No distractions. Just pure productivity from morning to night. And then CB will have a good night's sleep. A good night's sleep sounds good. Maybe last night's sleep isn't over yet. CB pulls pillow back over her head. 

Oblivion fails to return. CB gets up. Shuffles back to the bathroom and washes up without looking at herself in the mirror. Opens shirt drawer. What shirt should she select today to cover her mangled torso. That one is too tight. That one is too skimpy. That one is too bright. That one is too transparent. Might as well wear this one...again. Now what pants to wear. Too tight all of them. Sweatpants...again.

CB waddles downstairs to make breakfast. Feeling good. Ready to really bustle about. With great efficiency and sense of purpose, CB pulls out the eggs, the butter, the toast. Wondering whether all this activity might count as her exercise for the day, CB energetically drops a couple of pieces of bread into the toaster. 

The phone rings. CB answers. No one responds. CB hangs up. Suddenly CB remembers that she needs to transfer the laundry to the dryer. Back upstairs. While transferring the laundry, CB notices that she hadn't made the bed. CB makes the bed. She finds herself standing in the middle of the bedroom again. A bit confused. Now what is CB doing up here? CB sniffs the air. Something's burning. Damn. Fast waddle back down. The toast.

Back to the kitchen. The toast is burnt. CB extracts the toast and makes a big mess of crumbs. She cleans the crumbs. She does a really good job of this, and feels a sense of accomplishment. What else needs cleaning. CB notices that the cabinets have some smudges on them. CB vigorously cleans one or two cabinets. She peers into the oven and decides it too needs cleaning. She rinses out her cleaning rag in preparation for the oven cleaning project but sees water spots on the window. It may be time to clean the windows.

The phone rings. CB's sister checking in. They chat for 20 minutes. CB's son comes into the kitchen. "Is breakfast ready yet? Didn't you say you were going to make it about 2 hours ago?"

Time to do some work. CB sits down at her computer. First things first. Check email. Hmmmmm. Pottery Barn is having a sale. Might want to check that out. Huh, those curtains are nice. Now where might CB need some new curtains?

CB heads upstairs to consider this question. Once upstairs, CB can't remember what she's doing up there. Walking past the laundry machines reminds CB to fold the clothes in the dryer. Forty five minutes later CB returns to her desk.

CB continues to review her email. Then CB decides it is time to get serious. She opens up a work folder. She sits up straight, cleans her fingernails and writes the title of the paper she is working on. That feels good. She's on a roll now.

CB realizes she needs to do a little research first. She opens Google. Oh what a funny little video is posted on her home page. CB wonders what other funny videos she might find on You Tube. Lots. Back to the research. CB finds some information that might be relevant to her paper. She begins to read an article. She suddenly feels a bit peckish. Whoa! Time for lunch already.

So it goes...

Poll Results and Mental Health Update

So I am sure you are all dying to know the results of the poll. Eleven of you voted and the vote was unanimous that the Tufts response was unsatisfactory. You win. I will tell Tufts that I am not satisfied with their proposed "solution" to my complaint in a letter that I have copied below. I give Tufts further credit in the meantime for posting a comment in response to my post entitled, "A Lesson in Health Insurance." Now, that's astute social networking.

All continues to go smoothly with my treatment. The side effects of the chemo are tolerable, although becoming tiresome. I have four more infusions of the current cocktail and then a break before radiation starts. Did I tell you that during that break I am traveling with my family on a National Geographic Expedition to the Galapogos? We are celebrating the end of chemo, my mother's birthday and a 25th wedding anniversary. We're in a kind of carpe diem phase lately.

As the end of treatment approaches I feel increasing trepidation about my future health. My primary care provider has been haranguing me about the blood pressure readings I am getting before each infusion. She knows about these readings by tracking them through her secret, back door access to my cancer medical records. I think she's jealous about all the cancer drama and wants a piece of the action. As long as I can remember, or at least since the days I thought I had AIDS, my blood pressure is elevated at the doctor's office. "White coat hypertension" they call it. Wouldn't I be dead by now if I really had a serious, 30-year-old, untreated problem with my blood pressure?

Many times I have been instructed to take my blood pressure at home to prove that it is lower there than in the medical office, and year after year the readings prove the point. But my PCP doesn't seem convinced or she's concerned about a negligence lawsuit. The oncology nurse practitioner told me recently that she once participated in a workshop during which the facilitator instructed the attendees to be guided every day of  their practice by imagining what the patient might say in the witness box should she file a medical malpractice complaint. So much for medicine as art.

So the PCP called the oncologist and told the oncologist to tell me to set up an appointment with her to discuss my blood pressure readings. (She must have thought that the oncologist would have more sway with me than she would. Kind of like 7th grade romancing - Jenny, you tell Joey to tell Harry that Penelope likes you...) Meanwhile, the oncologist says, "I never pay any attention to the blood pressure readings that are collected in this office. You'd have to be dead not to have elevated blood pressure while receiving cancer treatments."

So all of this serves to remind me that once this breast cancer stuff is done, it's not like I can pretend I am healthy and happy and never have to worry about illness again. First, there is the 10% chance of recurrence. Second, my risks for getting other diseases is probably elevated. Third, I could get a whole new cancer and have to go through all this again, and worse. (Lately I've been focusing on melanoma and colon cancer.) I met a lady recently who while recovering from breast cancer treatment learned that she had colon cancer. This is why carpe diem works for me. I feel pretty good and pretty safe today. Time to go for a walk in the rain.

Have a happy week, everyone. xoxoxox
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Response to Tufts

Dear Ms. Jacobson,

Thank you for your letter dated May 19. I have considered your response and the proposed "resolution" of my complaint and have decided that it is not satisfactory, in part because I do not understand what the resolution is. Although you acknowledge that Tufts personnel did not follow proper procedures, you do not offer any suggestions for how to ensure that future patients do not suffer similar problems filling their prescriptions. You merely state that  "Your concerns have been documented and are now on file with Tufts Health Plan."   I do not see how this action resolves my complaint.

You discuss how personnel receive regular training on customer service but customer service wasn't really the issue. The issue was a conflict between two policies: one which required that the drug be provided through a mail order system and one that restricted dispensing of the drug to once every 14 days. My physician instructed me to take the drug every fourteen days following each chemotherapy appointment. The Tufts policy prohibited CuraScript from sending out the drug earlier than the 14^th day of the cycle thereby making it impossible for me to receive the drug in time to take it as prescribed. As a consequence of these conflicting policies, I was obliged to spend hours making phone calls to Tufts and CuraScript to obtain a waiver of the policy that would allow me to pick up the medicine at my local pharmacy. Moreover, Tufts and CuraScript personnel were obliged to deal with an anxious and increasingly frustrated patient for many hours that could have been spent more productively. In other words the conflicting policies result in more waste, increased overhead and lost productivity. It seems to me that the only appropriate "resolution" would be to change the policies to either extend the dispensing period to accommodate mailing time or to do away with the mail order requirement.

You also mention that CuraScript sent the prescription for four doses of Neulasta to CVS and "as such, CuraScript no longer held a valid prescription on file to accommodate future fills." This process is almost impossible to imagine in an era when most correspondence is conducted electronically ensuring that a "copy" of the prescription would still be available to CuraScript. If CuraScript actually conducts business in the manner you describe such that it does not retain copies of the prescriptions it sends to the pharmacy, I think another possible "resolution" to my complaint would be for Tufts to cancel its contract with CuraScript.

My chief objective is to prevent future incidents of this kind. Filing this paperwork will not achieve that result.

Thank you again for your efforts to seriously consider the issues I have raised.

Sincerely,

Prescription Perspectives

So. Big news.  Some of you might remember the blog post about the insurance nightmare of getting the drug Neulasta. Well, I sent copies of that post to the CEOs of Tufts Health Plan, CuraScript and Amgen. I recently received a four-page response from Tufts. The letter said stuff like:

•  "In order to address your concerns, we aligned your narrative with the documentation and records available from Tufts Health Plan, CuraScript and CVS..." (I guess these guys don't adhere to the view that the customer is always right. That must have something to do with ObamaCare.)
•  "A careful analysis of where the narratives blend and diverge provides us with an opportunity to thoughtfully acknowledge and appreciate your frustration." (I'm pretty sure it's just the "diverging" that provides this opportunity.)
• "In addition, our assessment illuminates the lattice of roles, responsibilities, and regulations inherent in the arrangement for and the delivery of healthcare." (Perhaps this illumination exercise might have been more beneficial had it been conducted prior to going into the mail-order drug business.)
• "The discrepancies among the narratives and in the results are indicative of an unfortunate misalignment of perspectives and responsibilities." (They got that right. My perspective was, I should take the medicine that the doctor prescribes. Theirs was, make her beg for it.)
• "...the manager evaluated the coordinator's focus to address your immediate needs..." (I wonder how this worked. Did the coordinator have to undergo an eye exam? I'm not sure the coordinator's "focus" was really relevant to the problem, but perhaps my confusion on this point has something to do with "misaligned perspectives.")

But, you've got to give them credit. It's not as if I received a word from any of the other companies...

So the letter attempted to explain the "misalignment" of how the process for filling the prescription should have occurred, and Tufts' "perspective" on how it did occur. The letter began its review of the prescription filling events on the day that I received my first dose. I guess they did not feel that the insane number of telephone calls that were necessary to convince them to supply the first dose were strictly on point. The letter did acknowledge, however, that my "telephone conversations with Member Specialists Michael (remember poor Michael?) and Nick (the supervisor with whom I never spoke because he was "not able to answer phone calls"(?)), are not available at this time to review and assess their content, tone, and sense of urgency..."  (Seems like their telephone logging system has a few glitches. Anyway, you'd think I had given them enough information about the "sense of urgency").

The true revelation of the letter was this amazing tidbit: "...however, what was missing was the recognition that the entire prescription for a total of four dosages was transferred to CVS and as such, CuraScript no longer held a valid prescription on file to accommodate future fills."

Ok. Let's consider that statement for a minute. Apparently, despite the astronomical sums they charge for drugs, and the existence of such cutting edge tools as computers, fax machines, the internet, and photocopy machines, once it sent the prescription to CVS, CuraScript no longer had a copy of it???!!!!  I mean seriously. CuraScripts receives a prescription from my doctor (which I imagine arrives as a fax, email, tweet...something other than in the form of a Hallmark card, which, admittedly, might be awkward to forward electronically) and then what do they do with it?  Do these people mean to tell me that they received a hard copy of the prescription, put it in an envelope, (forgetting to make a photocopy of it), addressed the envelope with a fountain pen, licked and sealed the envelope, stuck a stamp on it and dropped it in the nearest mailbox? Because that would be the only way that they would no longer have a copy of the prescription. Call me a cynic, but I ain't buying it.

And then there was this line, so filled with pathos and regret: "What should have been a seamless and contiguous process carried out according to protocol based on thoughtful and prudent planning, delegation of responsibilities, and integration of human and technical accountability--was not." While I appreciate this lofty aspiration, I don't think it is absolutely necessary for the Tufts HMO staff to figure out how to integrate "human and technical accountability." All they need to do is add two sentences to their procedures manual: "When you receive a prescription for multiple doses of a medicine that should not be dispensed all at once, be sure to keep a copy of it on file before sending the original to the drug store. Please note: Your job is to ensure that the patient receives the medicine by the time he or she is required to take it."

The letter concludes "Your concerns have been documented and are now on file with Tufts Health Plan. If you are not satisfied with this resolution, you have the right to request a reconsideration from Tufts Health Plan..."

I'm not convinced that the filing of the documentation will ensure that this "misalignment of perspectives" won't occur again, but I may have lost interest in further communication with these people. I am interested, however, to learn your thoughts. Check out the little poll at the top right-hand of this screen and let me know if you are "satisfied with this resolution." Together we will reform health insurance policy, assuming we can align our perspectives.