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.

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.

Lucky

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.

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~.

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.

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.

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.

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.

Pathology

Yesterday we received the official pathology report from my mastectomy. How very strange. I don't have the pages in front of me now to quote directly, but I can tell you that the first paragraph is a physical description of the thing itself - size, shape, skin color, biopsy scars. It even details the "erect" nipple, it's dimensions and color and "eccentric" location. I was interested to learn that my breast weighed 716 grams - a little more than a pound and a half. I would have guessed more.

And then the report goes into the location and size of the tumors. The most important details, as far as my doctors are concerned, are these: (1) The largest dimension of the largest tumor was 4 cm. (2) There was no cancer within 10 millimeters of the edge of the excised tissue. (3) Of the mass of lymph nodes taken from my armpit, there was cancer in just two of them.

Tumor size and number of involved lymph nodes are major factors in predicting my chances of survival. Later today I'll see the oncologist, whom I presume will explain my prognosis in detail. In the meantime, according to my amateur calculations, my chances of being alive and cancer free ten years from now fall at 70%. Seventy percent sounds okay when you picture a crowd of one hundred. I can see myself safely among the majority there. But if you think of 70% as so very close to 66%, and translate that number to a crowd of three where one of the three does not make it, well, I feel a whole heck of a lot more vulnerable.

In a way, I don't care at all about the numbers. I have to move forward and live, a pound and a half lighter. Simple as that.

Reality Check

To prepare for the reality of surgery, I combed the internet for photos and found this one of Christa Slotboom's double mastectomy without reconstruction. Her vitality and mobility just a few days post-op was so reassuring. And her shameless beauty four years later sealed the deal. Other shots in her Flickr collection show laughter and exuberance and joy with her children, and a few of cancer treatment too. And there is love. The person holding the camera clearly loves this woman, breasts or not.

Viewing these, I understood I could go through with this operation. Life would still go on, and life would still be good. Thank you Christa Slotboom.

As the fateful date approached, I combed Fickr and Google and discovered there are few other frank, reassuring images available to women like me. Could I add to the pot? I thought of the people in my life, those marginal ones who barely know me but would look out of curiosity. I believed I could not possibly be as brave as Christa.

And then, gradually, it dawned on me that actually, yes I could.

So here you go, four images of me, three days post-op, when two visiting nurses came to my home to change the bandages. I won't post them here, I'll post links only, in case you don't want to see. The pictures are taken by J~.

IMAGE 1. The ace-wrap is off, lotion applied to my cramped itchy back. Relief!

IMAGE 2. The wound is closed with stitches underneath the skin which will eventually dissolve. "Steri-strips" -- they look like packing tape to me -- secure the skin.

IMAGE 3. The tubes siphon fluid from the surgical site, one tunneling up into my armpit, the other under the incision, across my ribs. J~ empties the drains twice daily. The surgeon will remove these next week.

IMAGE 4. Wrapping me back up again.

PS. As I was finishing writing this post, my brother sent me this link, more mastectomy images. Interesting that the reconstructed breasts disturb me more than the missing ones...

Home

A few days before my mastectomy, my brother cut my long hair short for me. The thought of it tickling my neck and ratting up on the back of my head just didn't seem worth enduring, seeing as I'm likely to lose all of it in a few weeks anyway, once I begin chemotherapy.

I'm home from the hospital now, two days out from surgery and doing okay. I'm still a little woozy from the anesthesia, achy in spots, numb in others, but relatively mobile.

I'm wrapped tight in ace bandages from clavicle almost to the base of my ribs. Tomorrow a visiting nurse comes to change the dressing underneath, an event I both look forward to and dread, as I'm yet to see and really absorb the reality of my permanently altered self. With my remaining breast bound tight and all the padding of the surgical dressing, it's hard to grasp the extent of my newly acquired asymmetry.

There's much more to say but it will have to wait. For now, photos can do the talking. J~ took these this morning...

 

Which Cliff?

Cancer, it turns out, is a full-time job. Especially when you're still figuring out how bad it is and how best to treat it, not to mention adjusting your expectations of life to include a mastectomy, chemotherapy and all its attendant side effects, hormone therapy (at least five years of a menopause-inducing drug if not full-out war on my ovaries) and probably radiation. And of course that pesky possibility of my life being over within the decade.

And then there's the issue of clinical trials. Clinical trials are highly regimented studies of either new experimental drugs or existing drugs used in experimental ways. The way it's explained to me, the clinical trial is the main pipeline by which advances in medicine come about. Many a cancer patient credits clinical trials for adding years to their lives. I have a friend who was told he's likely be dead in 2.5 years. He was offered the opportunity to participate in a small clinical trial. He decided it was worth the risk. Thirteen years later,  he's the only one of the participants alive to say it was worth it.

So clinical trials can be great. But then again, if they knew ahead of time that the experimental protocol would be safe and effective, they wouldn't need a study.

I'm told I'm at high risk, with a grade 3, possibly Stage 3 cancerous mass maybe as much as 5 centimeters in diameter, with a "cluster" of "involved" lymph nodes in my armpit. The operative words (forgive the pun) are "possibly" and "maybe." My risk of recurrence is somewhere in the range of 50 to 80%. My risk of not being alive five years from now is in that same maddeningly wide range. I have been combing through the literature, quizzing my doctors like they are star witnesses in the trial of the century, counseling about the choices in treatment I'm offered. What it comes down to, I'm told over and over, is that they just don't know, there's no compelling data to suggest one course of action is superior to another. I have to choose what I'm most comfortable with.

Do I gamble on surgery, get the thing out of me, or delay action another two or three weeks in order to take my chances with something that might just maybe offer a heretofore unproven benefit?

"It's like choosing which cliff to jump off of," says my friend K~.

Exactly.

I've made my choice.

I'm going forward with surgery tomorrow.

Free fall.

No Mets!

What a day - PET scan in the morning, EKG in the afternoon. In between: a swim, a cry in the locker room listening to my PET scan results via voicemail, and more questions for the doctors.

Right now: a bowl of miso soup (with daikon radish, ginger, carrot, leeks, and a mysterious dried green sea vegetable I had in a jar in my cabinet. Delicious). In a few minutes I'll leave to meet some girlfriends for a "girls night in" - chick flicks and more good eats and drinks. It is so nice to be looking forward to something fun!

The PET scan showed "no distant metastasis." In other words, the cancer has not taken root beyond my breast and armpit. This is very very good news. The statistics for women with metastatic breast cancer are very poor. On the other hand, the PET scan also shows that the cancer is very active, that the activity in my armpit represents a "cluster" of nodes rather than just one or two. This has serious implications for my survival as well, of course, but the bottom line right now is that it could be worse and it's not.

All my doctors reiterate that they are comfortable with either plan. I could go straight to surgery on Monday, or I could enroll in the clinical trial at Dana Farber, which means I've got hoops to jump through (paper work, more blood tests, another biopsy) before treatment could begin. I am still very much on the fence.

Decisions, Decisions

The trip to Dana Farber did not make any of this easier. Instead of down-to-earth, plain-spoken doctors confirming the course of actions prescribed by my local docs, I was presented with yet another option: a clinical trial involving an experimental drug not yet approved for early-stage breast cancer, a drug that is actually probably about to have it's FDA license revoked for use in late-stage breast cancer. It's an expensive, politically controversial drug at the forefront of emerging science, a new way to attack cancer by compromising it's blood supply. Doctors and scientists are very excited about it. This drug, Avastin, seems to be adding to the lifespan for folks suffering a variety of other cancers.

If I do this trial, I'll have chemo before surgery, basically the same exact chemo I would have had closer to home, plus Avastin. Apparently there is no statistical difference between surgery first or chemo first in terms of how long I might live. Though this isn't true for everyone, I'll lose my breast either way.

The Dana Farber docs confirmed that the course of action prescribed by my local docs was perfectly good.

I spoke to my Dr. Z (my local surgeon) and Dr. R (my local oncologist), and they say they wouldn't discourage me from doing the clinical trial.

Here's the thing: it's a risk. There are a lot of unknowns.

But I'm already at risk. "High risk" says Dr. R.

Dr. Z says "No pressure. You can cancel surgery Monday morning, five minutes before we start. It's fine."

I need a month to think this over. But a month to think it over is a month where cancer has the reins. Not an option. So instead, I will decide in four days.

Of course, this all assumes that the PET scan I'm getting Friday doesn't raise red flags about metastatic disease (cancer spread in other regions of my body). If that's the case, everything changes again.

Count Down

A recent Millie-walk (with J's blessing of course, and the permission of the talented photographer, Lori Mackay)

Just seven more days before cancer takes center stage.

I say that as if cancer hasn't already forced its way into the center of everything I do. As if I weren't giving up the first of those seven days (tomorrow) to drive two hours and back to Boston for second opinions at Dana Farber. As if there wasn't a PET scan on the horizon with its looming specter of metastatic disease, and a deep well of panic that bubbles over if I go more than a day or two without a good cry. Cancer places a gilded frame around each mundane pleasure in this whole and healthy-seeming body, rendering achingly poignant each dog walk, each hug, each swim and run and random smile from a stranger who has absolutely no idea what looms inside me.

For the first time since we found the lump, yesterday J~ and I took time to really be together intimately. We've been too numb, shocked, frightened. To put it another way: matters of life and death are not an aphrodisiac for us.

I can tell you, it is a very strange thing to feel sensations of pleasure in a part of your body that is soon to be gone, for which you have strong and opposing feelings. It was emotional for both of us. And time well spent.

I should add one more thing: cancer, especially my hormone-stimulated type of cancer, is very strict: we have to be careful now not to get pregnant. Ever. How very surreal.

Welcome to Cancerville

Got the call from Dr. Z last night to tell me that yes, the new lump is cancer too, in the armpit it's also cancer, and the original site is indeed Invasive Ductal Carcinoma, all of it grade 3, which means the most aggressive type. Other tests that get more into its genetic and hormonal personality (so to speak) are pending. PET scan is on the horizon, and maybe CT and bone scans as well, if the insurance companies insist on these being done before the PET scan will be approved.

Poor J~ looks distraught. I think he had his hopes up for better news. I, on the other hand, expected nothing less, though I had conveniently forgotten the grade 3 business, which was already on the table with the first biopsy.

We don't have all the information to formally "stage" the cancer, but according to Dr. Susan Love's Breast Book , by a measure of tumor size and count of involved lymph nodes alone, assuming things are just slightly worse than we've gathered so far, my chances of being alive five years might not be a whole lot better than a flip of the coin.

I'm not freaked out by this.

Okay, I'll admit it, I am a little freaked out by this. I didn't sleep much last night. But I know statistics only paint the broadest picture. I am my own individual case and that's all there is to it. Even so, the words going through my mind today are these: My life is on the line.

So yes, it sucks, and yes, it's stressful, and boy do I hate what it's putting my loved ones through. But dammit —I know this will sound strange — it's also kind of exciting. It's an adventure like none other and I embrace that aspect completely. I have never been so thoroughly conscious of the preciousness of my life, my relationships, and my strength. I'm not letting any of it go to waste.

Biopsy, Round 2

The biopsy last time left me very sore, with a baseball-sized bruise and a reluctance to move much. Every bounce of the chest stung, even the underwater bounce three days later, after my flip-turns when I pushed off the wall to begin the next lap.

This time, though there were three sites rather than one, surprisingly, it wasn't so bad. I was back in the pool last night, just a day and a half later, and I will probably go running today. Only my armpit is sore.

The new biopsies were done under the guidance of ultrasound. I was able to watch as the needle entered my flesh, as local anesthetic was squirted into and around the targeted areas, and as samples — little white strips about 1.5 cm long and the thickness of cooked spaghetti — were extracted, two or three from each site.

The three places that were biopsied included the original large lump in my right breast, another smaller lump found in the same breast (a new one), and the lump in my armpit (which turned out to be two enlarged lymph nodes side by side). I should here from Dr. Z today or tomorrow with lab results. 

I expect to hear that the new lump is cancerous. It looked just like the larger one. If it is, there is no question - they will want to do a mastectomy. I don't know what to make of the lymph nodes, but I wouldn't be surprised by bad news there as well.

In any case, I have meetings scheduled with Dr. Z, the surgeon, and Dr. R, a medical oncologist, to discuss what happens next. Both appointments are on Friday. It will be good to get past this stage of anxious waiting.

In the meantime, I'm carrying my cell phone and voice recorder every where I go.

PS - if you were having surgery and wanted to have soothing, uplifting music in your ears while unconscious (something without much in the way of lyrics or drama) what would you choose? I'm looking for suggestions. Thanks!

Around the Bend

Mastectomy. Though I won't know for sure until November 1st's biopsy results come in, that's what I'm expecting I'll have to face two weeks later. Have I told you that surgery is scheduled for November 15th? What kind of surgery is yet to be determined, but this is what I expect. A call from Dr. Z yesterday confirms this; she wanted to prepare me for the possibility, told me to think about what questions I might have.

I read about mastectomy in Dr. Susan Love's Breast Book last night after J~ fell asleep, and cried silently over the details. There will be pain, there will be rehabilitation issues for my arm, and a long, slow recovery — my doctor tells her patients to expect to be out of work for six weeks. There will be permanent numbness where the breast once was. Something akin to phantom limb, which I'll call phantom boob, occasionally happens. Some people have nerve damage that leaves them with permanent pain. A huge swath of flesh will be taken, tunneling up to the collarbone and into the armpit. I've got little more than two weeks to wrap my mind around this.

Then there's the question of reconstructive surgery. Though I'll hear out a plastic surgeon, I expect I'll decide that this is not for me. I don't dye my hair, I almost never shave my legs. With the exception of my wedding ring, I don't wear makeup or jewelry except on the most special of occasions. Of course it's a very very individual decision and I would never fault those who choose it, but the extra surgeries and the possible complications and the very idea of a prosthetic that I can't remove at the end of the day does not appeal to me in the least.

I've already Googled clothing for women who've had mastectomies and so far I've not come across what I want - bras and bathing suits that will support my remaining breast (assuming I have a remaining breast) without gaping on the other side, or filling in the asymmetry with ruffles or padding. I want fitted tops that don't disguise the truth. I think of Aimee Mullins running on her high-tech carbon fiber cheetah legs, and wonder - can't I be powerfully, bravely asymmetrical? Can't I have extra racing stripes from neck to armpit and leave it at that? (If anyone knows any resources for this kind of thing, please send them my way.)

Don't get me wrong, I'm dreading the stares and the discomfort I cause for others. I know this is not going to be easy. I've had a hard enough time in the locker room already, feeling shame and inhibition over the bruising from my first biopsy.

I also worry about balance and the health of my back. My breasts are not small, the weight differential will not be insignificant.

There are a group of women I swim with regularly. I think I will ask them to come to my house and be with me and my new appearance before I go public with it. I'm sure they will be wonderful, and I'll probably weep. I'd want to also give them a chance to talk and think about how it feels to them to see me this way. We all fear breast cancer, and by "we" I mean all of us women. And now I'm going to be a living reminder of that fear. I want to be okay with that. And I'll need that human moment before venturing back into the world of strangers with all the pretense that will surround their feelings.

I'll get a lightweight prosthetic and special bras with a pocket to hold it in place, and once once the surgery wound is fully healed, I'll get a silicone prosthetic too, the kind that adheres tightly to the skin. I'll wear that whenever I want to simply fit in. And I'll keep in mind what my sister-in-law said: I'm allowed to change my mind.

It's Never Too Soon to Panic

Dr. Z called yesterday while I was out running errands with my mother.

Every conversation with a doctor since my diagnosis has left my mind spinning with questions and uncertainty. Did I hear right? What did she mean by that? But after listening to the recording of the first conversation with Dr. Z, I felt a lot of relief. I understood everything she had been trying to explain. In one or two cases I saw how I'd struggled to understand, and how I could have rephrased my questions more effectively.

Imagine being told there is a grenade in your breast. When the doctor goes on to explain the detective work ahead, what they know and don't know about the type and size and caliber and whether or not there are more grenades and the protocol by which they determine how best to remove or diffuse them, it might be hard to stop thinking, Oh my God there's a grenade in my breast! Am I going to die? Am I going to suffer? Is it safe to breathe?

I ran to the car to sit in relative quiet with my notebook, pen, voice recorder, and list of questions, all of which I'd brought along in anticipation of this call. I manically unpacked my stuff while the doctor waited patiently on the other end of the line. I was shaking madly, so I guess it's no surprise that I messed up with the voice recorder, only pressing the record button once, which lights up the display and the red record light, instead of twice, which is how you start the tape rolling. Disappointing, to say the least, but here's the gist of it:

The cancerous area that lit up on the mammogram is actually adjacent to the lump, not the lump itself. And the area that lit up on the MRI is adjacent to that. Plus there are two other areas in that breast, and another small one in the other which they will want to biopsy along with the swollen lymph node as soon as possible. "There's a lot going on in there," said Dr. Z.

I'm expecting a call today to schedule the procedure.

Fear Factor

The big worry at the moment is the lump in my armpit. I knew there was a swollen gland there at least since the biopsy, but I've been feeling discomfort in the area since before the biopsy. Yesterday in the shower I probed my armpit with my fingers. It wasn't the first time I'd checked, but it was the first time I'd felt around in there while standing upright. From that position, it's hard to ignore the lump, deep in the crotch of my armpit, hard, pear-shaped, almost as big as a chickpea at it's widest.

And now I am hyper-aware of the lymph nodes near my collarbone, in my neck and groin. There is tenderness and tightness in these areas at various times, especially on the right side. The sense I have is that, to the extent that lymph nodes have minds, my entire lymphatic system has its mind on cancer.

I had my mammogram and MRI on Friday. I was able to see the mammogram right away, and talk about it with a radiologist. I'm still waiting on news regarding the MRI, hoping I'll hear from the doctor tonight.

The good news is that, according to the mammogram, there were no new areas of concern. But the MRI will show more, including lymph nodes.

My heart is in my throat and my legs go wobbly every time the phone rings.

Eight Days and Counting

It's hard to find the time right now to sit and write. There's so much I want to do, so much I want to learn, so much I need to process. I am not the type to blindly follow a doctor's recommendations. I need to understand the rationale, the research, the controversies if there are any, both philosophical and scientific.

I've known that I have breast cancer for eight days. It is terrifying, of course, but also it riles me up. I cry and scream. I laugh too, and make my friends and loved ones cry and laugh. People want to take care of me, bring me a blanket, a glass of water. I'm not sick! I tell them. Save it for when I am sick. It'll come soon enough. Yesterday I reached into the bottom drawer of my refrigerator and found that yet again the carrots were frozen. Last week I threw away sweet potatoes, apples, and another bag of carrots because of the same problem. Sometimes the vent between fridge and freezer ices over, and no coldness at all gets into the fridge. "I hate this fucking refrigerator!" I shouted. I am not usually so volatile. But earlier that morning I'd discovered my internet router was dead. It was wet. My stepson had flooded the toilet in the bathroom above earlier that morning, and I had wasted a precious hour troubleshooting before I discovered the leak through the ceiling was the cause.

When you're trying to cope with a new diagnosis of cancer, with a surgery date already on the books (just three weeks away) in which, who knows, I might lose a body part, household issues are overwhelming. Luckily I had the presence of mind to call a tech-savvy friend who will come over today with a brand new router and install it for me.

As for the refrigerator, it's still cowering in the kitchen. It knows it's living on very thin ice. Excuse the pun.

Latest developments: I have switched doctors for oh so many reasons. Dr. Z had me do a mammogram and MRI on Friday (yesterday) and put off the bone scan and CT scan. "We need to know more about what's going on in your breast first," she said. She wants to re-biopsy the lump, it might actually be two lumps side by side or one with two parts. She wants to check out both of them. And also there is a lump in my armpit (dammit) which she will also biopsy. No date for that set yet but it will be soon.

On the bright side, I got to see the mammogram films yesterday and nothing showed up in either breast outside of the area of concern we are already dealing with. But I am told I have "young dense breast tissue" which means it's harder to see everything this way. The MRI will show more.

Leaps and Bounds

Random disjointed musings from a recently diagnosed cancer "survivor":

Did you know that you're considered a cancer survivor as soon as you're diagnosed? So far I've been a survivor for five days. So far so good!

Of course cancer sucks in every possible way, but still, it seems an amazing privilege to be confronted so intensely with one's own mortality. I can no longer shy away from the important things in life.

Thanks to all the delurkers (and everyone else) for your comments of support.

To anyone who knows me personally and happened upon this blog in a web-surfing expedition: you don't have to pretend you don't know or don't read. It's not, nothing here, is a secret.

I talked to my Dad on the phone last night, to find out how he's doing with this. "It's funny," he told me, "I'm perfectly fine until someone asks me how I'm doing."

"So Dad," I replied, "How are you doing?"

"That's not fair!" he said, and the feelings were at the surface.

If you know me you know that I believe it's much better to feel things than stuff the feelings down. The act of feeling, emoting, is the very work needed to make room for a fresh perspective.

I've been doing a ton of it myself and it helps it helps it helps.

I need to figure out what doctor(s) I'm going to work with. I've been stressed out about this. Asking around, I keep hearing about Dr. Z, a female surgeon heading a breast health center about an hour from me. She's very much in demand, I was told, it might be hard to get an appointment with her. I made a call and found out her breast health center is not currently taking new patients. I was able to make an appointment with Dr. Z for today, however in a different office, a little further away.

Meanwhile, in a parallel and separate universe, my older brother J~ was doing his own research and heard about Dr. Z from M~, his best friend from the house next door to us growing up, my own beloved favorite babysitter, who it turns out, works as a physician's assistant in the same hospital with Dr. Z. This friend, knowing how Z is and not knowing I already had an appointment, talked to her about me, said I was practically his sister, and she told him to have me call her directly to make sure I got an appointment.

I spoke to M~ yesterday and he was incredible. He assured me that Dr. Z is "better than advertised", that once I'm in with her anywhere, I'll have the access I need to the breast health center's labs and doctors, that he will make sure I don't get lost in the shuffle, that the fact that I didn't truly become conscious about the lump right away was normal, and that he will call me tomorrow after my appointment and not to worry, I'm in very good hands. He also said that he burst into tears himself when he heard the news from my brother. Of course I was crying too hard to speak and am again crying now thinking about this. Can you imagine hearing all this from a man you adored and as a child, who wrestled with you and your little brothers and cared for you so sweetly when he was just a teenager?

So much more to say.

Before and After

I have an hour before leaving for my appointment.  I thought I'd use a little of that time to download a random sample of the whirlwind of thoughts in my mind right now:

My brother has set up a Google group for my family and close friends (sort of like an email listserve, with the advantage that all messages are archived.) I've enlisted him as Chief Disseminator, Keeper of the Facts. I'll call him with details of test results, and he'll write it up. As appropriate, I'll copy and past info here.

In the meantime, I know that by the size alone, this cancer is at least Stage 2. This is what the doctor told me. It is ringing in my mind. We won't know more about the stage today. I can't shake the thought that it's already in the lymph nodes. Though the doctor didn't feel any swelling, I feel something internally, a sort of tingling. I've been feeling this for a while now. Perhaps it's psychosomatic. I hope so.

Right now I am snacking on half-thawed frozen strawberries that I picked last summer. I have been eating super-healthy lately, had been moving in that direction for months. I've lost probably fifteen pounds. This weekend I ran six miles on Saturday and another six on Sunday. This morning I swam over a mile without stopping and the better part of a second mile doing various drills, got out of the pool because of time constraints rather than fatigue. I ran my first half-marathon last weekend and my time was significantly faster than I expected. At the end I actually felt disappointed that there wasn't another mile or two to go. I felt great. I feel great now. I keep thinking: better savor this while it lasts.

I spoke to a friend of a friend about her cancer experience yesterday. If I am faced with the prospect of mastectomy, as she was, I don't know what I will do. I'd rather have no boobs than fake boobs but the idea of a single boob is not so appealing. Nor is lopping off a healthy part of my body for the sake of symmetry (would I really want to swim or run wearing a prosthesis? I don't think so). The choices seem horrible.

---

Another traumatic doctor's appointment behind us now. The information J~ and I gathered was largely technical and what I expected, though Dr. S mentioned wanting me to have a bone scan and a CT scan before the surgery. I wasn't excited about that, and he said it would be okay to do it afterwards too. In going over the information, he brought up yet again the fact that he had not felt any palpable lymph nodes when examining me the other day. This was clearly a hopeful point in his mind.

But things took a turn when I asked him to show me exactly where the lymph nodes are under my arm because I have been worried. I feel something there. I see I wrote tingling earlier. It's not that. It's more like the feeling in your cheeks when you think about eating a lemon. Only in the armpit. And slightly tender. I also admitted that I've had some tingling in my hands. Could that be related to lymph nodes? "There's no science to connect the two" he told me. He felt me again, this time digging in a little more determinedly then he had before. There is one "very large" palpable lymph node after all. He looked me in the eye for a long moment. He looked devastated.

Bone scan, CT scan are back on the table, along with the expected MRI and mammogram, all scheduled over the next several days. When I asked what these tests would look for, he mentioned several places where cancer may have spread - liver, lungs, bones, nerves... I had no idea there could be cancer on the nerves. Oh crap.

Results Are In

When I had my biopsy on Wednesday, the surgeon asked me to come in on Monday to talk about the results. "How long does it take to get the results?" I asked.

"Forty-eight to seventy-two hours," he said.

"So you might know by Friday?"

"Yes."

I made an appointment for Monday, but asked him to call me with the news if he found out Friday, good or bad.

I did not expect the call to come at ten in the morning, while I was headed home from the gym, my hair still wet from the pool and smelling of chlorine. "I'm driving right now. I'm two minutes from home," I told him.

"Okay, I'll call you back in fifteen minutes. Okay?"

"Okay."

My thighs were shaking as I rushed into the house, used the bathroom, gathered a pen and paper and the phone, and sat down at the kitchen table to wait. I called J~ at work and told him to stay by the phone, I would call him right away.

When the phone rang, I had calmed myself. "I have your lab results," said Dr. S~, in a tone chipper enough to get my hopes up, "It's cancer."

J~ came straight home from work. We walked the dog, we cried, we looked up the terms. So far I am diagnosed with Ductal Carcinoma In Situ (which means cancer confined to the milk duct). But because the mass is so large - 2.2 cm - Dr. S expects this diagnosis will change to Invasive Ductal Carcinoma.

I am devastated. I am terrified. I am getting down to business. There is so much more to say but it will have to wait until I have a bit more free time to reflect.

Happy Biopsy Day!

Okay so that's sarcastic. The only thing that's happy about having a breast biopsy today is that it's over. What's not over is the waiting for results. And the soreness, which isn't so bad really, though I won't go running tonight or tomorrow or maybe even the next day. The procedure itself, while not terribly painful, was nonetheless traumatic for me. There was a scalpel involved, which came as a shock to me. In explaining what was to come, the surgeon neglected to mention this.

I couldn't see exactly what he was doing (and maybe I didn't exactly want to see) but from the motion of his arm, he seemed to be mincing a little section of flesh, which he explained was to make an easier path for the needle.

How do they get away with that word, needle? It's really much too thick to be reasonably called a needle (unless you're talking about a knitting needle, in which case it's accurate). Attached to this is a plastic handle that reminded me of an electric toothbrush, which is in turn attached to a cord leading to a blue and white machine the size of a bedside table, a brand new "state of the art" vacuum-assisted needle core biopsy extractor (though I'm sure that's not the technical name for it). In fact, I was the first contestant, the guinea pig. Lucky me.

The nurse, beforehand, asked if I minded if Debbie was in the room during my procedure.

"Who's Debbie?" I asked.

"The owner of the machine," she replied, blinking at me, wide-eyed, to which I don't remember what I said but it was something along the lines of: "Huh? What?"

Debbie, the nurse finally explained (after a few more rounds of "Huh? What?") was the representative from the surgical equipment company. Did I mind if she was in the room? Yes I did mind and said so.

Being the first in line for a new machine worried me, but I quizzed the surgeon until I felt confident that he had worked with similar machines and didn't think Debbie's presence was necessary for the safety of the procedure. And then I held onto J~'s hand while the whole thing went down. Thank heavens he was with me, I don't think I could have done this without him.

The surgeon's words are echoing in my mind - he checked out the lab report, felt the lump, called it "very suspicious." But when I started to cry he changed that to "a little suspicious." I'm trying not to read anything into this. Who knows, maybe he thought I needed to be scared into doing the biopsy. Maybe he didn't want Debbie to have made a trip out to his office for nothing. Or maybe I will be embarking on a whole new blogging chapter as I navigate the treacherous terrain of breast cancer. Of course I was hoping he'd feel the lump and say he wasn't concerned, but I knew that was unlikely and I was prepared to go through with this today. If luck is on my side, I'll get good news Friday (or Monday) and that will be the end of it.

Thanks to all those who wrote such sweet comments in response to my last post. It may seem hard to believe that words from strangers could mean so much to me, but they do.

I will, of course, keep you posted.

There Are Reasons

I have been silent for a month. Why?

The most recent reason is the lump, but I'll get to that.

At first it was because I was giving myself a vacation from the computer, spending more time outdoors, enjoying the waning days of summer, my favorite time of the year.

Then it was because the fertility specialist had recommended I retest that one clotting factor in order to get a better sense of whether blood clotting might be an issue in my next pregnancy. But for some reason, I kept putting off that blood test, and I didn't know what to say about that.

Then, on the heels of a heart-to-heart with J~ about why it didn't seem to bother him that I wasn't following through, it became clear to me that I was in it, on a certain level, alone. While another child was a dream for him, it wasn't a high priority. I came to understand yet again (but perhaps a bit more deeply) that a baby would basically be my project, my all-consuming chore for years to come, and though he would help in every way he could, and though he would be a dedicated and loving father, and though I would take immense pleasure in raising my own child... I could not bring myself to finish this sentence.

I finally told J~ that I did not want this badly enough to want it badly alone. J~ had to admit, he was not in that place. "Maybe twenty years ago..." he began, and suddenly I was thinking back over my own past, landing on myself at 25. I worked part-time as a nanny for four children, ages 5, 5, 3 and 1 1/2, and I was good at it, I enjoyed it. One afternoon I drew a picture of the baby, asleep in her stroller, all her pudgy folds, and as I did this, on some level I knew. I was ready. But I wasn't financially stable and my boyfriend would have been terrified. I expect if I had told him then that I wanted to have a baby, he would have disappeared in a cloud of dust a la Road Runner and Wile E. Coyote. (Which is what he did ten years later, but that's another story.)

And then I wasn't writing because I didn't know how to tell you I'd pulled the plug. Though I still don't see myself actively preventing pregnancy, I am done trying, more done than any of the other times I've professed that I was done. I fear, dear readers, you will be disappointed and you will go away.

It's a funny thing, blogging. When I started this, I was throwing my words into the ether, thrilled and surprised to find anyone out there was actually taking the time to read them. I'm not a secretive person by nature. Over time, many of my friends and family members came to know that I do this. My mother reads regularly, my father checks in. It doesn't escape my consciousness that there's a good chance my ex-husband stops by on occasion, satisfying his curiosity while sidestepping the pesky chore of actually communicating with me. I never thought I'd come to depend on the support I receive from or feel a responsibility to the large community of strangers who make up most of my readers. But sometimes I wish I'd never told anyone I know.

Because then, when I find a lump in my breast, I wouldn't feel reluctant to write about it. I wouldn't worry about pushy questions and panicky judgments about my choices in health care. I don't want to be grilled about what I'm doing and not doing and how fast I'm doing and not doing it. I don't want to hear horror stories. I don't want everyone's fear flying at me. Trust me, I'm scared enough.

On the bright side, my lump is less than half the size it was when we first found it 10 days ago. The radiologist I spoke to said that while "anything can happen" she'd never heard of a cancerous lump shrinking, that it's very common in women my age that benign lumps grow and shrink along with the ebb and flow of the menstrual cycle, and she confirmed what I've read all over the internet – that 80% of all breast lumps turn out to be benign. And that when there are more than one lump next to each other (it turns out there are two of them) it's actually a good sign.

The Beach

One afternoon toward the end of our vacation, J~ and I hiked along a wind-swept cliff where Pacific Ocean meets land at the Wilder Preserve, just north of Santa Cruz. The wind was so cold and stiff we had to lean into it, shoulders rigid, but the sky was crystalline, cloudless, and the sun was warm.

Eventually, we wound down a narrow trail to a sheltered cove. It was a relief to get out of the wind, to watch the deep blue ocean, the waves rolling in, to dig our feet into warm sand and feel the sun hot on our backs. We had the place to ourselves. Before long we were out of our sweatshirts and sprawled in the sand sleeping like contented kittens.

Internally, I am still sleeping on that beach, blissful in the sun as waves crash and whisper on the shore of my mind, drowning out all other voices. In the background, I am aware of the all the mental lists, chores waiting, urgent questions unanswered, decisive actions not yet taken. But I am limp and smiling and not quite conscious and in no hurry to become so.

These last few weeks of summer are my favorite. I hope you are enjoying them too.

The Old and the New

J~ and I are in California, in a hotel overlooking Monterey Bay in Santa Cruz. We can hear the surf from our bed, and see it from our window. We are dividing our time between exploring old memories (we both have history here) and creating new ones: running, good food (mostly sushi), hiking, and the beach.

A few days ago, before setting off on this adventure, we visited the fertility clinic and learned the results of all our testing: my uterus looks normal. One tiny fibroid but nothing to worry about, nothing that would cause a miscarriage. Karyotyping (genetic testing for both of us) also normal, as were all other tests of my blood except one clotting factor was a little bit high. I don't have the paperwork here with me so I can't get very specific, but suffice it to say, the doctor thinks this could be a factor in at least some of my miscarriages. He thinks that if and when I get pregnant again I should take both baby aspirin and Lovenox.

I'm a little skittish about this. I could handle the aspirin. For those who do not know, Lovenox is a drug I would have to take by injection. Every day. Ouch. Not to mention the fact that this blood clotting issue supposedly does not come into play with pregnancies that fail before 10 weeks. All of mine were in the process of failing well before ten weeks, if not completely over by then.

Ah, but for now there is no decision to be made. As far as I know, I'm not pregnant. In a day or two, I will know that for sure. And I'm on vacation. Last time I was in Santa Cruz I was living out of a back pack in the woods behind UCSC, unsure that I would ever have a life with enough financial and emotional stability that such a trip would be possible. I have lots of wonderful memories of that time in my life. Perhaps I had a healthier, more capable and fertile womb in those days. But all tolled, now is better. Life is good!

Moving Forward

I've been a negligent blogger. Ever since I put the last miscarriage behind me, I've been moving – biking, running, swimming. J~ is training for the Hartford Marathon in October, his first ever, and his excitement is contagious. I've never run more than six miles in a row myself, but now I'm considering it. I'm maybe just maybe going to do the half marathon. That's enough for me, I think. Thirteen miles? We'll see how it goes.

I've been reading three books on miscarriage, and I want to recommend all three, particularly the idea of reading all o them at the same time. They cover some of the same scientific bases but from different points of view, which makes it possible to get a nuanced understanding of the state of this mysterious medical field. I recommend these books especially if you, like me, have had multiple miscarriages and don't have a lock on why. So without further ado, here are the books. Click on them for more info:

          

Since I last wrote. J~ and I visited a new fertility clinic. This was not an easy thing for me to do. In fact, I told J~ I wanted to cancel because I hadn't secured all my medical records in time. He asked for the real reason, and I had to admit my fear of being judged, my discouragement, my desire not to give over any more of my life to what seems to be a losing battle. All of this made me cry to admit, and the tears cleared the air. I didn't cancel the appointment.

The doctor was friendly, respectful, and patient as I recounted my history and ran him through the gauntlet of my ten million questions (I came with a list). He recommended a battery of blood tests (for hormone levels, clotting and immunology issues, thyroid function, insulin, and of course genetics testing for both of us.) He also recommended a Sonohystogram (SHG), a procedure in which saline solution is injected through the cervix in order to better view the uterus via ultrasound.

I've said many times that I'm not up for anything invasive. Loyal readers, you've heard me say it. My rule of thumb: Nothing ever again goes in through my cervix except sperm. The doctor did not pressure me, or at least it didn't seem like he was pressuring. But many of my questions led back to this test. For instance, though I know it's a long shot, I've always been haunted by the question, What if I have scarring from the abortion? Could that cause an early miscarriage? The doctor said, "The SHG would show if there is scarring."

I reconsidered. Could J~ be there with me? I asked. "Of course!" boomed the doc. And suddenly I was in tears. I had not been even close to crying recounting my history, or hearing that even if they find a problem and fix it, at my age, I may very well miscarry again. None of this was new information. The new thing was the realization, on some deep primal level, that the abortion is over. That I am not a frightened teenager all alone. That no one is judging me for what I'm going through, there is no shame in it. There will be no gruff, anonymous doctor treating me like just another vagina on a gruesome assembly line. I won't have to pretend, later in the day, that nothing happened.

(For the record, by the way, while working in an abortion clinic, I have seen with my own eyes that not all abortion docs are like that. I wouldn't go so far as to say they are usually personable and compassionate, but once in a while they are very much so.)

As things stand today, the blood tests are behind me. (I've never seen so many little glass vials lined up for my blood!)

As instructed, I will call to schedule my SHG when my next period arrives. (That is, if it arrives. J~ and I have been supremely uncareful this month. Then again, I'd be shocked if I'm pregnant again already. It's the first cycle after a miscarriage. I'm forty years old. And if you don't count #6, which, let's face it, maybe never really happened, this last pregnancy took almost two and a half years to achieve.)

I'm not optimistic that I'll ever get pregnant again, less optimistic that I'll find any answers. But right now, I feel good about going forward with these tests. Even if I never have a child to show for it, at least I'll eliminate some of the unknowns.

It's Over

I was spotting Wednesday, bleeding Thursday afternoon, cramping Thursday night. But then it all faded away. Friday morning the cramps returned in earnest and I was truly in labor – there's no other word for it – until the early afternoon. Luckily J~ was able to get away from work to be with me throughout. B~ (my stepson) was at a friend's house. The timing was good.

It was exactly three weeks after I'd gotten the bad news that pregnancy hormones were not increasing rapidly enough for this to be a viable pregnancy. Three weeks sounds about right to me. I mention this because so many women are convinced by well-meaning professionals that their interventions, either surgical or medical, are needed to help things along. I know it's hard to wait on a miscarriage, but in my opinion, the time is precious. It allows the body to gently switch hormonal gears. It provides space to think and to grieve, assuming you can let yourself be in that space, in that physical window of time before the menstrual cycle and all of life's busy routines crowd a very real loss into obscurity.

And then there is the reassuring miracle that our bodies know what to do. Even if all the tissue isn't expelled at this time, the next cycle will wash the stray bits out. That has been my experience anyway, and I trust it. After all, women have been having miscarriages for thousands of years without ultrasound and drugs, let alone surgery!

I don't mean to make light of the pain, because there is pain. My sister-in-law, whom I supported through a late first-trimester miscarriage, said her pain was no less than the pain she felt as she labored birthing her children, except that it ended at the point that she would normally begin to feel the urge to push.

For me, there is also comfort in seeing what comes out with my own eyes in the privacy of my own home. As I have always done, I collected the mass in a plastic container and took it to an area with good light. I invited J~ to join me if he wanted to see, which he did. (This next part is graphic, so skip the next paragraph if you're squeamish.)

This time there was a mass of deep red, what I took to be placenta, about four inches long and an inch or so thick. Attached to it was a wrinkly white tube which I eventually understood to be the mostly-deflated gestational sac. At one end there was a chickpea-sized bubble where fluid remained. After consulting with J~, I broke this open to find a half-inch long translucent little tadpole. A splotch of blue-black blood lodged in its center — the heart? And a second, much smaller dark area seemed to be in the head. Perhaps the beginning of eyes?

It was reassuring to see this, to understand that my body had built and tried to preserve a little cocoon for this creature though the sac had mostly given way. I don't know what went wrong, and I suppose I never will. But I'm glad to see that for some time anyway, things progressed in at least a semblance of the manner that they should.

I'm still bleeding, still cramping, though with less intensity and frequency as the days pass. And I'm beginning to feel better, more and more like my old self. Deep breath. Phew.

Ten Weeks Not

First off, I want to thank everyone who has taken the time and showed so much heart in sharing their stories and opinions. I take it all to heart. J~ and I read and discuss your comments together. It helps. It really does.

The other day I ran into a woman I know, an acquaintance who also happens to be a doctor. I took a deep breath and stopped her to ask if she knew an RE she could recommend who specializes in miscarriage. She didn't even know what an RE was, but of course asked many questions, and before I knew it I'd stumbled into that conversational cul-de-sac I have come to truly hate.  

Have you considered adoption?

Why must everyone ask this? It's part of why I find it so difficult to seek answers and support. Do people honestly think I haven't thought of that? Don't they realize that what they're saying, on some level, is, Have you considered giving up? 

You wouldn't ask an overweight neighbor, Why don't you just go on a diet? If someone stopped you on the street to ask for directions to Joe's Restaurant, you wouldn't say, Have you considered going to John's Restaurant instead? even thoughthe food at Joe's is greasy and over-priced. Wouldn't that be considered rude? Why is this different?

Okay, okay, I'm venting. I know people care and are just trying to understand. My anger isn't with this individual, or with anyone else who broaches the subject. It's just way too flip of a question about way too tricky a subject, and I hate how little sensitivity is built into our societal consciousness. It hits a very raw nerve. Perhaps it would be better if I just got angry in the moment, but instead I take on the role of educator, ambassador for all of us in this hidden realm of pregnancy loss. I make the mistake of answering with depth and feeling. I bare my soul. I told this woman, If my husband and I were ten years younger, if he didn't already have a child, I bet would be looking into adoption. If someone left a baby at our doorstep, or if J~ was saying he wanted to adopt, I'd probably be thrilled. I'd be nervous and I'd have to think about it, but I'd be thrilled. But this is not where we're at.

She was still looking at me with puzzlement and concern, so I went on to talk about the teenage abortion I never wanted to have, my fear ever since that I'd never get to have children. And just when I was about to admit that, at this point, after this many failures, I feel like I want the experience of a healthy pregnancy more than I want the child, I deflected her questioning expression by bringing the subject back around to my quest for help, to my fear of asking. To how much courage it took for me to stop her in passing and ask these revealing questions in the first place, let alone call up strangers on the phone. Because, let's face it, I've been wanting good medical support for a long time and have felt completely overwhelmed and discouraged about seeking it out.

And then she gave me some really good, simple advice. She suggested I let myself have my emotions but keep that separate from the work at hand. Make a list of tasks and do what you need to do. 

So I did. I sat down with J~ and went over his work schedule. I made some calls. And I made two appointments at times when he is free to come along, one with each of the major fertility clinics in the state. (I can't go out of state without paying out of pocket, so this is where I'll start.) Of course neither clinic wants to see me until I'm no longer pregnant, so both appointments are in July. Hopefully by then I'll be a clean slate, so to speak. Hopefully I won't be writing again next week at "Eleven Weeks Not."

At least for the time being, I'd like my body back.

Nine Weeks Not

Still waiting. Feeling less and less pregnant, though there are moments when I feel nauseous and tender. Strange how these little surges tease up hope, even when I know there isn't a chance.

On the other hand, the very fact that I got pregnant again raises my hopes.

Supposedly I was done trying, but very soon after I found out I was pregnant, I found myself thinking, if this one doesn't work, I might want to give it one more go. I told J~ my thoughts, and he agreed, he didn't feel quite done either. Another year, we agreed. We'll give it one more year.

I'm not sure yet when the clock starts on this One More Year, but certainly we're in the grace period now, while I'm waiting to miscarry, and probably for a cycle or two after that.

In the meantime, I am collecting inspirational stories - there are a nice bouquet of them in the comments of the previous post - thank you all so much!

Anybody else? I'm particularly interested in women who miscarried repeatedly in their thirties and then had a successful pregnancy after forty. I am learning that it happens much more frequently than I previously imagined. Details are welcome and encouraged!

I'm also on the lookout for good medical support. Long time readers might recall that I went to an RE two or three years ago, the only one I could find in my state (Connecticut) who focused on miscarriage. This doc had an air of defeat around him which I found troubling, though I couldn't quite put my finger on it until I got his form letter several weeks later announcing his retirement.

I'm also going to start charting again - I'm suspecting a luteal phase deficit and I want to gather evidence. I'd love to hear about any natural approaches to remedying this, if any exist. I have Clomid-phobia, though progesterone is looking less scary these days...

As for my age-old ambivalence about having children, it isn't exactly gone. I am clear in my desire to succeed at pregnancy, but the next part, where I give myself over physically, mentally, and financially to raising a child, that's harder to wrap my mind around. I really want to cross that bridge. I can imagine the triumph and joy I would feel to have done so. But the landscape on the other side? It still looks pretty darn challenging.

The Waiting Game

What a strange thing to be pregnant, yet not. Queasy, sore, bloated, tired. Waiting for the tide to change.

Top that off with running into an old miscarriage-survivor buddy in the store this afternoon - she's pregnant and glowing. I am hopeful for her, but it's bittersweet.

In some ways, this pregnancy's demise has been the easiest to come to terms with yet. After all, I've got lots of practice, and a rich life to fall back on. But I'm forty now. The future doesn't exactly glow with the promise of a shiny new possibility. I am having to face reality in a way I haven't before.

I talk a good game about moving on, but the truth is, I had my life crammed overfull of commitments and distractions. This time in life's waiting room is my free pass, an opportunity to disentangle, weed out the overflow and come back into harmony with the life I want to be living. If it takes a while to move through it, so be it.

Beta Two

Not good. 18,538. Sorry it took me so long to report this.

I was devastated for about ten minutes but then, surprisingly, I felt so much better, exhausted but better.

It has been a hell of a week. Every time I anticipated a test, or a test result, I would be doubled over with nausea for hours. Not the kind of nausea where I'd actually expect to throw up, not the kind of nausea where I'd get my hopes up about the pregnancy (though I did get my hopes up anyway), but the kind of nausea like someone's boot in my gut, like the week after my first husband admitted he was having an affair, like I can hardly breathe and the only cure is sobbing, sobbing my guts out (which I did, several times).

I will not have a D&C. I will not take misoprostol/cytotec. I will not blame myself for this misfortune in any way.

I will garden. And swim. And walk my dog. And paint. And make beautiful salads. And count my blessings, of which there are many. And Babies or Not, life will go on.

Beta One

I got my first hCG count today: 16924. According to my calculations, this was at 6 weeks 6 days pregnant. The lab lists the six-to-eight week normal as anywhere between 15,000 and 200,000. So yes, I'm in the range. It's low but I'm in the range. I was told not to assign any meaning to this number unless it was drastically off target. It is tomorrow's number (which I'll receive on Friday) that will give us a clue.

I expected today's number would be low, though possibly in range. And I expect tomorrow's number will also be low.  For those of you who haven't ridden the fertility roller coaster, in a healthy pregnancy, tomorrow's number should be double yesterday's.

Wouldn't it be cool if I could come back to tell you 36,000? That a second ultrasound reveals all is well? I would love to give hope to those of you reading this who are worried about your own pregnancies. Though I still have moments of hopefulness, I must admit, I've mostly resigned myself to believing it's all but over. I am expecting to hear a number in the range of 12,000 to 17,500.

I've had to slog through some dark emotions, but I'm doing it. The brightest spot of the day today was realizing that this too shall pass. Funny how easy it is to lose sight of this fact. I will move through this, put it behind me, and go forward to embrace the myriad blessings that are my life.

Limbo = Torture

I'm an emotional wreck this afternoon. My dog doesn't know what to make of me, though she enjoys licking the snot off my face.

Such a strange experience, going back to the scene of the crime, the same waiting room, three years shabbier, sitting next to J~, feeling excited, optimistic (I'd been nauseous since last night, first time in weeks); it had to be a good sign. Or nerves.

There was little to see on the ultrasound - something that looked like it could be the fetal sac, something that looks like it could be a yolk sac, "but not quite right" said the ultrasound tech, a calm, careful woman in her late forties. She focused in on a little lump, but said she could see no fetal pole. No heartbeat. The "sac" measures 6 weeks 2 days, she told us, then she measured my ovaries, a protrusion in the fallopian tube, asked me repeatedly if I'd had any pain on one side or the other (no) and then took the pictures to the doctor.

His pronouncement? Possibly too soon to tell. Order hCG quants today (Tuesday) and again on Thursday.

So many things I didn't think to do: I didn't ask for progesterone testing. When she mentioned something about thickened endometrium, about a possible cyst, I didn't follow up on these either, just like I didn't ask if my ovaries looked as they should to support a pregnancy at this stage, didn't ask what exactly was wrong-looking about the sac? How much variation is normal according to dates? After all, I'm pretty sure I'm 6w6d, not 6w2d...

I did say, "I'd rather hear now that it's a long shot than hold out false hope. You've seen a lot of these. Do you really think there's any chance?" The tech took a breath, a moment to think. I know she can't contradict the doctor. I was asking an impossible question. Finally she spoke. "It took me seventeen years to get my one child. I wouldn't want to rule out even the smallest thread of hope."

I cried in the parking lot, explained to J~ my hunch, that the big concern for the doctor is that if my numbers are still going up, to make sure the pregnancy is developing in my uterus rather than in the tube or outside. If my numbers are hovering around the same or going down, then the highest likelihood is confirmed: the pregnancy is not developing as it should. Sooner or later, I will miscarry.

J~ went on to work, I went on to the lab for the blood work. And then I came home and ate lunch, scoured the internet for information, hopeful or not. Didn't find much either way. Talked to a loved one on the phone, the best kind - someone who offers no advice, encourages me to cry, and listens supportively while I do.

Next, I'll write an email to my client telling her I'm going to give myself the rest of the day to be an emotional wreck (she knows what's going on). I'll plant some string beans and beets. And then I'll go to the plant nursery where I'll buy basil, parsley, and flowers. I'll take the dog to the water so she can splash around. And then I'll come home to hug my husband. And to move forward with life.

Ultrasound, Here We Come

Three years ago, when I was 6 weeks 4 days pregnant, J~ and I went together to a doctor in hopes of receiving good news about a pregnancy I felt sure was doomed. We did receive good news that day, saw a fetus of just the right size with a good heartbeat on the ultrasound screen. (I wrote all about it here). We went home stunned and elated. Actually, J~ was elated. I was thrilled but also shell-shocked, unable to shake my fears. As you may know, ultimately, things did not work out with that pregnancy.

Tomorrow morning at 8:45 we will revisit that same waiting room, that same ultrasound machine. I will be six weeks six days pregnant, forty years old instead of thirty-seven. I feel very much as I did three years ago, though less distraught. Whatever the news, I will spend the afternoon tending to my garden, my dog, my newest design client. I will eat a nice lunch from tonight's leftovers: green salad, curried chicken, and brown rice. I will probably cry.

And then I will update the blog.

Lifting the Veil

It's decided. You've convinced me. I'm calling a doctor.

The tricky thing is, who do I call? I haven't been seeing any doctors in a long while. The one fertility doc I saw (almost three years ago now), Dr. M,  retired shortly after my first appointment.

If my calculations are correct, it's 6 weeks 4 days since my last period. Pregnancy symptoms are much less than they were two weeks ago, much less than they were at this point with other pregnancies. Staining has graduated to spotting. I've told everyone who asks that it's over, it's just a matter of time.

In order to spare myself the emotional rollercoaster, I thought I would simply skip it altogether, assume the worst, accept it. When bleeding begins, I resolved to weather the storm with a few DVDs and a hot water bottle. And then move on.

Oh who am I kidding? I still have surges of pregnancy symptoms, and of course I'm thrilled when I do. I still fantasize that everything is actually okay, and appreciate the veil of mystery that makes this possible. And yes, I'm afraid to have some stranger take that away from me.

But I don't want to live in fantasy any more. If this pregnancy is over, then I want to know it. If there's hope, if there's something that can be done, I want to know that too.

I'm going to call Dr. M's clinic first thing tomorrow (Monday), in hopes that my medical records are still on file, that someone else will take on this orphaned patient and respond to the urgency of my plea. Cross your fingers for me.

Now What?

No news is good news.

Or maybe no news is just plain torture?

Still staining, off and on, but no red blood.

Breast tenderness, on rare occasion, and cramps increasing, and then going away, and then increasing, and then going away.

This morning I woke up feeling like someone is pressing their thumb into my stomach - a sign I usually associate with pregnancy.

I'm afraid to get my hopes up.

I'm afraid to go get my HCG levels checked, afraid I'll miscarry while awaiting test results – as if the gods like a cruel joke and are just waiting to sting me with hard reality.

I go through the day, coping. And then I get a call from a friend telling me how deeply she loves me, that she supports me and however I'm handling what I'm going through, that she'd do anything to help, make me lunch, clean my bathroom, call in others to support me too, accompany me to the doctor... and I am awash in tears. Why do I assume I must go through this alone?

Revisiting LimboLand

I'm not sure where to begin. On the surface, there isn't much to report. I haven't truly begun to bleed, though there has been staining on and off. Early on, I passed a smear of clear slime with a thread of red in it. I assume this is an early version of the mucus plug which seals the cervix shut during pregnancy. I've seen it every time about a week before I miscarry.

For several days I felt occasional waves of cramps with no real pattern except that they seemed to be getting more intense and, strangely, less frequent. Those cramps were different from what I usually experience, broadly abdominal rather than strictly uterine. I haven't had any nausea or breast tenderness (except right now, I must admit, my breasts are sore). I suppose I could find hope in this but it is canceled by a steady-droning, increasingly intense uterine ache. This is very familiar. I would be surprised if I'm not bleeding by the end of the day.

I have been reluctant to talk about all this. The time between the demise of a pregnancy and an actual miscarriage is fraught with conflicting symptoms. I don't want to fend off hopefuls who insist I shouldn't give up. I appreciate the sentiment, and assure you, I'm doing nothing to prevent a pregnancy from succeeding. It's just that I know this terrain so well, and I recall the torture I felt in the past, clinging desperately to decreasing hope.

Of course I imagine myself looking back at this eight months from now with a baby in my arms. How could I not? But when that thought comes through, I do not cling. I acknowledge it for what it is, and appreciate its sweetness. And move forward into the next moment of waiting.

Breaking News

Staining this morning, pregnancy symptoms mostly gone, a touch of cramps...

Yeah, I think it's over.

On top of that, I'm fighting a  cold - headache, sore throat...

And it's rainy and chilly today. And I promised my neighbor, out of town for the day, that I'd walk her dog along with my own this morning.

Yuck.

In Pursuit of "Normal"

Here's the thing: I am an expert on miscarriage, on the signs and symptoms — at least my signs and symptoms — of a miscarriage on the way. But I have no idea what is "normal." I put that word in quotes because I know there's no such thing, no single definition. Every woman has her own story, sometimes multiple stories, as each pregnancy comes with its own parameters.

So what should I think when I'm nauseous, off and on, for two days, and then a day goes by with no more than a tinge of heartburn? Is that cause for alarm? Or is that normal?

One thing I know is that it's heartbreaking to cling to fading symptoms. I must move forward with the day, the week, life. Breathe breathe breathe.

Mother's Day

Today I gave myself a Mother's Day gift: I got straight of bed this morning and unwrapped the last home pregnancy test I had in the box. The idea was to reassure myself. A week after my first test, I imagined this one should have a very strong test line, maybe even as dark as the control line. But then again, who knows how much chemical is on the strip, there could be a limit to how dark that line can get. This is what I told myself as I awaited my results. I didn't want to be too disappointed.

Here's what I didn't expect: the test line might actually turn out to be darker and thicker than the control.

It was most definitely darker and thicker than the control line. I brought the test back to bed and J~ and I admired it together.

Here's another thing I didn't expect: that within minutes I might be so queasy I'd need crackers and a gulp of water - twice - to settle my stomach. Had a similar bout of nausea yesterday, after an hour of yoga.

Yes folks, it's really happening. I'm pregnant yet again, and this time, despite my darker days earlier in the week, my hopes are very very up.

Another Roll of the Dice

On the bright side: I did get a high BBT yesterday, the day following my low one. (For those of you who don't know - the subtleties of a woman's temperature reading upon first waking in the morning can indicate where she is in her menstrual cycle. A higher temperature means hormones are shifting towards supporting a pregnancy. Lower readings mean hormones have shifted toward supporting menstruation. But it's not an exact science, and you're right, Emily, I'm stopping. In fact, I've stopped.

And I refuse to run to the doctor for blood tests to see if my pregnancy hormones are doubling as they should be. Nor will I run for an ultrasound the minute I'm pregnant enough (assuming I do become pregnant enough) to see a heartbeat. I've been down that road before and found temporary reassurance, only to be utterly devastated a few days or weeks later.

Instead, I will distract myself when I can, call upon support from friends and family when I can't, and move forward through my days trying to straddle two possible futures. I said to J~ last night, We did it again, we created a life. Who knows how long it will last, but we did that and it's amazing in and of itself. I will try to be grateful that I've been given another chance.

And yes, MC, I am taking the baby aspirin this time.

As always, I will keep you posted!

That Dark Place

I had two days of optimism. The nausea helped. But then the nausea was less and I went to that dark place, where miracle happy endings simply do not happen, where every pregnancy ends badly.

I told a friend my news and my fears and she countered with a story of another friend, who gave up trying after every conceivable intervention failed, miscarriage after miscarriage, deciding she just wasn't meant to have children. And then, at 40, had a first, and two years later, a second healthy daughter.

I broke into tears hearing that, realizing it might just be okay to retain a modicum of hope.

This morning I checked my basal body temperature, and found myself just .05 higher than I usually am before my monthly period. This is not good news. I am back to the dark place.

My dog is bringing me her toy, insisting that I play with her. Life, apparently, goes on.