Wednesday, December 29, 2010

Gratitude, In Three-Part Harmony

PART 1: 
In spite of a tenacious cold, limited range of motion in my right arm, and continuing issues with fluid retention around my surgical site, I've been swimming again and it feels great. You can see proof of the fact on the blog of a locally famous English Channel swimmer - here. (Now I feel famous too!) I've studied this photo and even I can't tell which side has a breast and which does not. Of course, this is just one angle and the fact isn't truly disguised, but it's nice to notice that something I braced myself for is really not such a glaring big deal.

PART 2: 
(I've been making thank you cards. See more here.) 

PART 3: 
Some thoughts, in poem-form, written in the car two days ago as J~ drove us home from a holiday visit with family:

I understand now that life is short
that forty is young
that now matters
that later is tantamount to never
that I am temporary
and so are you.

I keep coming back to the desire
to give all my gifts
to orchestrate my life's energy
around giving
both personally and professionally
and to practice
on myself.

Wednesday, December 22, 2010

Have I Mentioned That Cancer Sucks?

The ninth floor of the Dana Farber Cancer Center in Boston is dedicated entirely to breast cancer. When you arrive there for the first time, you stand in line to receive your very own plastic bracelet with your very own Dana Farber bar code. You are handed a clipboard and directed to sit in a very busy waiting room chock full of women, some alone, some with accompanying loved ones.

On the day I visited, several women in the waiting room wore surgical masks, a few wore wigs or hats or scarves or hat-scarf combinations. There was no long hair that wasn't fake. A woman wearing a blazer and turtleneck, chatting with her husband, had only one breast. Two women in wheelchairs, pale and exhausted-looking, had their almost hairless heads bowed together in conversation. I caught several women looking at me, taking in my healthy glow and very long, very real hair with and a sort of wry, ironic sadness in their eyes and knowing Mona Lisa smiles on their lips.  

New kid, I imagined them thinking. You're one of us now.

It is in moments like this that the surreal numbness wears away and I want to run screaming from this nightmare. How is it possible that I have breast cancer? That I had a cancerous lump in my breast, in fact, a breast riddled with cancer, cancer in my lymph nodes, a very serious life-threatening situation, and I had absolutely no idea, not one clue? How is it that I was happy and proud of my body, confident in my health just days before, and now my breast is gone, the lymph nodes under my arm are gone, the skin across that side of my chest and underarm are entirely numb and will most likely remain so for the rest of my life?

I have not returned to Dana Farber, will not return any time soon. My surgery and the remaining treatment I have chosen was and will be administered an hour from my home, in Hartford, CT. I expect my chemo will begin in the first week of the new year. I suspect that when I walk into that chemotherapy room, people with IVs attached to their bodies will glance up at me with knowing, sad, Mona Lisa smiles. I will again want to run screaming in the other direction, to insist that no, I am not one of these people. I do not belong here. There has to be some mistake!

It's going to be hard.

Saturday, December 18, 2010


When I first found out I have cancer, I curled into the corner of the couch, afraid to move. When J~ came home, he rushed to do everything for me. Why this tendency to treat me as suddenly fragile, like my body could not be trusted? When we recognized it, we laughed, and made a conscious effort to recall that I am not sick.

Okay, so I have cancer. But I'm not sick. I don't have to act like I'm sick.

After surgery, this kid-gloves tendency resurfaced. Of course it made sense at first. I was in pain. And then the fluid continued to build up in the surgical site and Dr. Z kept urging me to take it easy. But now that the drains are out (yes, the drains are out!) and I'm gradually recovering my range of motion. It's time to begin reclaiming my strength and confidence in my capabilities.

Tonight J~ and I were driving from one errand to another through a downtown area. Cars were slowing, people were gathering on the sidewalk. J~ slowed and stopped the car, rolled down his window. In the night glare, it was difficult to understand what we were seeing. There was a car pulled over, windshield utterly crushed. A man was rolling on the ground beside it, and in front of it, a woman knelt with her head down to the pavement. Someone crouched nervously over her. A woman strode into the street, fumbling with a cell phone, shouting to an onlooker to call 911.

J~ was already out of the car while I sat frozen. Perhaps I should stay put, I heard myself thinking, but then I snapped out of it. Cancer does not get to claim me so thoroughly. I can still be of use.

And so I was, calming the crying woman, encouraging her not to move, bunching my scarf as a pillow for her blood-soaked head, trying to reassure her across the language divide that her esposo/boyfriend was okay. She had a deep gash on her forehead, blood all over her face. She was crying, she kept trying to get up. Meanwhile, J~ and the cellphone woman attended to the injured man, who was also conscious, though more marginally so, and bleeding from the back of his head.

When paramedics arrived and took over, J~ and I returned to our car. We cleaned up and then gazed at each other in wide-eyed wonder. We still don't know exactly what happened, who was driving the car, whether these people were in it or, more likely, hit crossing the street. J~ shook his head.

"What are you thinking?" I asked him.

"That anything can happen," he said.

It didn't matter that the people we helped spoke only Spanish, that the man smelled faintly of alcohol, that they had, apparently, been hit by a car. I think I can speak for both of us in saying that we felt a kinship with this couple, with the shock and gravity of their situation. And I think we both felt lucky. Lucky that we were able to help. Lucky to understand how vulnerable we all are. Lucky to have each other. Lucky to be okay for another day.

Hug your loved ones. Happy holidays to you and yours. I wish for you many many more lucky, appreciative, okay days.

Tuesday, December 14, 2010

Whining is My Cardio

Still too much fluid, but the drains are beginning to fall out on their own (the skin that the stitches were attached to has ripped off and died). Sorry to be so graphic but that's the story. We'll see what Dr. Z has to say. I'm off to my appointment right now.

PS. I don't say it often enough but thanks to everyone for your words of encouragement and support. I read every comment, and appreciate every word, and so does J~.

Friday, December 10, 2010

Cancer Sucks

The drains did not come out Tuesday — still too much fluid — rescheduled for this afternoon, with strict orders to lounge around, no using my arm, no walking the dog.

The drains did not come out today. Dr. Z canceled my appointment — she went home sick midday.

Attempt #6: next Tuesday.

I spent this morning being tested and scanned - urine, blood, heart (MUGA scan), chest (x-ray) and discussing another clinical trial I am considering with the research nurse in charge.

Yesterday I met with yet another doctor to discuss radiation therapy - and yes, it is recommended that I have radiation after chemo, five weeks of it, five days a week.

I'm also supposed to see a cardiologist to discuss the dangers of chemotherapy to my heart and a drug that might help protect me. I've got a list of ten or so drugs now which may come into play to protect me from various side effects of chemo. Of course there are side effects to the side effect medications. It's mind boggling.

The plan for chemo is as follows:

One dose every two weeks for eight weeks.
One dose every week for twelve weeks.
Five weeks of radiation.
Five years of hormone therapy, which means a daily pill that turns off estrogen.
And maybe then another drug after that, to stop estrogen production entirely.

It sounds straightforward, but it's not. "Things change all the time," says the nurse who oversees the clinical trial I'm considering. Chemo gets delayed because of illness, low blood counts, veins too scarred over for intravenous access so that it becomes necessary to implant a port, even bad weather and holidays.

And if I do the clinical trial, there will be another drug added to the picture, a drug that I might be expected to stay on for a full year.

Today both J~ and I had meltdowns. Short ones, but still, meltdowns just the same.

Cancer sucks.

Tuesday, December 07, 2010

Multiple Meltdown Monday

Mondays are typically difficult for me. I often find the transition from weekend family time to solitary work time challenging. Add a funeral in the family to which my brothers drove together, too far for me to feel comfortable traveling with the drain tubes still in me, yesterday was particularly hard.

Cancer no longer feels like an interesting adventure. It's beginning to feel like what it actually is, a huge imposition on my life.

In spite of the never ending saga of the drains, when I look at the mastectomy site now I'm shocked at how well and quickly I am healing. It's not a wound any more; it's simply a scar. A thin silvery-pink line across the breadth of my rib cage. Looking at it, I'm struck by painful reality: My breast is gone. Forever.

The next wave follows: and I might die. Soon.

On the bright side, "soon" does not mean hit-by-a-truck soon. It means nearly a one in three chance that I won't live to see fifty. Plenty of time to plan for departure, say my good byes, give parting gifts, and burn my most incriminating / embarrassing journals.

But bright sides and jokes aside, I'm really really angry. I do not in any way deserve this. Even if there is something in my past that accounts for this disease, like the few cigarettes I smoked in my late teens and early twenties — which the genetics counselor I saw last week suggested "might have done it," it's still not my fault. Would I have smoked cigarettes if I hadn't been desperately lonely and sad, if I could see my way to a healthier outlet for my emotions? Of course not.

We do what we can to get by, and sometimes getting by is a deceptively difficult proposition.

Speaking of outlets, healthy and otherwise, yesterday I tried the old Eat Another Handful of Peanuts and Watch Another Comedy Video diversion. But eventually my stomach was sick and the comedy was not making me laugh. So I called in the troops. J~ and three others took turns on the phone and in person, listening to me rage about the unfairness of it all and blubber about my gone-forever breast, fear of chemotherapy, and the high unlikelihood that the drains will come out today.

And then I blew my nose and walked the dog, ate a healthy dinner, watched another video and went to bed.

And that, dear friends, is how a person survives another day with cancer.

Friday, December 03, 2010

Not Yet

No luck with the drains – as of last night there was still way too much fluid, and the doctor agreed, I shouldn't bother keeping my appointment this morning.

On the bright side, today there was ever so slightly less.

Drain removal attempt #4: this coming Tuesday.

Most people have their drains out in 7-10 days. Today is Day 18. Tuesday will be Day 22.

I’m healing well, but apparently I’m extra juicy.

Wednesday, December 01, 2010

Two Weeks Two Days

Sixteen days since my mastectomy, possibly as little as twelve days until I begin chemotherapy, I'm in an unpleasant limbo. I expect I'll require a little more time.  I want to feel fully recovered before I square up to the next blow, and right now, I can't imagine being there any time soon.

From what I read, most women are completely numb in the area of their surgery. In my case, the skin of my breast area is numb, but any pressure against my chest wall feels like direct contact with my bones. It's unpleasant and disconcerting rather than painful. According to the look on my face, captured here  by my brother D~ while J~ empties my drains, apparently it's extremely unpleasant. And the skin of my tricep area is so hypersensitive that fabric brushing against it feels like friction against a partially open wound.

Though most people have them removed by now, I still have too much fluid around my surgical sites to take out the drains.

"Why so much fluid?" My surgeon asked when she saw me yesterday, smirking, eyes narrowed. "Have you been exercising?

I had to confess that yes I have been exercising, but only walking, plus a few short sessions on the spin bike. I'm very careful to spare my arm and my "pectoralis muscle" as Dr Z likes to say. She has cautioned me against overuse, warning that use creates fluid, and I have obeyed. After all, I desperately want the drains out. I hate hate hate the drains.

But as much as I hate them, I hate being sedentary more. My back aches and my head aches and I'm gradually putting on weight and losing my usual sense of vigor.

So I'll keep moving, in moderation, and I'll keep draining, hopefully also in moderation. And if all goes well, when I go back to the surgeon on Friday I'll say goodbye to the drains forever. If I am so lucky, I will celebrate with a long-awaited shower.

Okay, so I'm frustrated. You're probably picking up on that. But overall, I swear, really, I'm doing okay.

And now, if you'll excuse me, time to go wash my hair in the sink.