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!