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.