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!