Friday, February 8, 2013

V. Hair

When it comes to losing one's hair, there is a huge difference between theoretical and actual - and this may sound totally sexist, but I think it's much worse if you're a woman. (Except maybe if you're Ozzy Osbourne or Russell Brand.)

Chemotherapy = hair loss. We all know this, right? But I sailed through my first two treatments with very little nausea and almost no other side effects, so to an outside observer I didn't "look" like someone with cancer. Then a few days after my second treatment, having not lost a single strand of hair, I pulled on the back of my head as a little experiment. I was shocked to see that several strands came out quite easily.

When I reported this new development to my family, they were unperturbed; after all, except for my relatively new short haircut, I looked pretty much the same. Then one night, Henry (my 13-year-old) and I were sitting on the couch watching TV. He said, "So Mom, does your hair just come out when you pull it?" He was curious - exactly how hard do you have to pull? - and asked if he could try. I figured he'd yank a strand or two, so I shrugged and said sure. Suddenly, he was holding dozens of my hairs - I'd describe it as somewhere between a bouquet and a chunk.

I tried not to act freaked out - after all, this was inevitable, we may as well not pathologize the process, right? - but I was. It was horrifying.

Since then (and having now undergone three treatments so far), I have cried many, many tears over the loss of my hair. Usually I'd wait until I was in the presence of my husband, Chris, to completely fall apart; but my friends Sarah and Lisa have also witnessed my sad little breakdowns.

Chris tried to console me by pointing out that I have had almost no side effects and very little nausea. A long marriage is great in many ways, but especially this one: you don't need to use a whole lot of words to explain yourself. In this case, I simply looked at Chris and what he read in my eyes conveyed his mistake immediately. (Keep this in mind, guys: rule one is simply validate your wife's feelings.) He got it: I would rather throw up for sixteen weeks straight than lose my hair.

Sometimes I feel like I'm behaving in an infantile way, whining about my hair. After all, I have very treatable cancer, caught early, I will be fine. My hair will grow back. There are people in much, much worse circumstances than me. I haven't thrown up once. I'm still doing Bikram yoga, for god's sake. How much complaining am I really due?

But I can't get around it: losing my hair is depressing. I feel unattractive. I'm wearing beanie hats now all the time - otherwise my head feels cold - and anytime I take one off or switch hats, there are dozens of hairs in it. Hair is everywhere: in my bathroom sink, on the floor, and when I wash my hair (which I do purposely rarely) it clogs up the drain. It's disgusting, and I'm appalled that my own body is doing this, purging my head of hair.

Henry made the joke that eventually I'm going to look like Gollum from "The Hobbit," with just two or three strands of hair plastered to my otherwise-bald scalp. It's funny, I'll admit.

When I'm feeling philosophical, I think about what this means for me as a woman and why it's so hard. It goes to society's ideals of beauty, certainly, for women; our femininity and more basically, our femaleness, are so tied into things like hair. It is difficult (if not impossible) to feel pretty when you are a (soon-to-be) bald woman. But as my friend Jill said, another way to think about it is this: the hair I'm losing now is my "cancer hair." This is bad hair, poisoned hair, and I'm shedding it to make room for new, healthy, cancer-free hair. Not a bad way to think of it.

One more weird thing: I'm having a Pavlovian response, but instead of bells and salivating, I have hair loss and nausea. When I look at myself hatless in the mirror, or when I'm cleaning hair out of a beanie, it literally makes me feel queasy. The very sight of myself or my lost hair makes me sick. Calling Dr. Pavlov...

That's probably enough whining for one column. The bottom line is: I'm doing well. Chemo has not (yet) kicked my ass physically, I feel strong and capable. Emotionally, I am supported in every way possible. I will not only survive this, but my (and my oncologist's) plan is to beat this cancer into submission, to poison and shame it so it dare not show its face in my life ever again. And by the time summer rolls into my beautiful northern California town, my hair will already be growing back. I may even have progressed by then from Gollum to Richard Simmons.

Thursday, January 10, 2013

IV. Chemo Begins, with a Bonus: Bronchitis

The Kindness of Strangers and Others

I cut my hair. And then I cut it again. I can't even remember the last time I wore my hair short - I don't particularly like it short, but I know it's going to fall out within weeks, so I wanted to feel some modicum of control over the process. (Or the illusion of control, anyway.) My hair stylist, Kara, cut my hair for free, a gesture that brought me to the verge of tears, as so many things do these days. She has even offered to come to my house to do the "final deed," i.e. if I decide to cut it all off before it falls out on its own.

Part of it, too, is getting my boys used to my new look; I've taken to wearing beanies around the house so that when the hair goes, it will be less of a shock for them. My goal is to grow it long again when all of this is over; and I figure I will have earned the right to say, "Fuck the fact that I'm over 50 - if I want long hair, I get to have it."

The innumerable kindnesses of those around me never cease to amaze. My surgery was a little over a month ago. I woke in the recovery room to the face of a beautiful nurse, herself bald from recently-completed chemo, also a breast cancer survivor. This nurse, Jimette, stayed by my side the entire day - a day which was made much longer by the fact that I developed a hematoma (blood pooling in the surgical area) and had to go back into the OR for a second procedure. When I woke up the second time, Jimette was there again. Although I was loopy as hell, we did talk a lot about "our" disease and her experience with it. The next day, when I was recovering in my lovely private room with a view of Mount Tamalpais (really, you gotta love Marin County), I had a phone call on my room phone. It was Jimette, just checking in.

I sent Jimette a thank-you note care of the hospital shortly after I went home; I wanted her to know how much her being there had meant to me, and that I felt she was somehow fated to be my recovery nurse. A few days later, I received a long note in the mail from her, giving me all her phone numbers and encouraging me to call her anytime. She said: "I truly believe I was put there that day to help you and also believe you were there for me as I still am going through my journey... People come into our lives at different times and for long periods & short periods but all for a reason."

Yet another example: my oncology nurse, Nicole, who ushered me and Chris through our "Chemo 101" class and who will be there with me for most of my chemo sessions. Her husband is a cancer survivor; in fact, she said his experience was what drew her to work in oncology. Like my surgeon, Leah Kelley, Nicole is an incredibly warm and affectionate person. When I had my inevitable breakdown in Chemo 101 - of course, it was the whole hair loss thing that set me off, as it always does - Nicole took me into her arms without a thought.

I had my first chemo session last week and - except for the fact that I had somehow contracted bronchitis a few days before, so they had to put me and Chris in an "isolation" room - everything went without incident. If you discount the coughing and hacking due to the bronchitis and a very very slight level of nausea the first couple of days after the treatment, I feel pretty good. My bloodwork from yesterday (one week post-chemo) was, according to the nurse on the phone, "great." In fact, she said, "You must be some kind of overachiever!" Ah, little did she know: I come from a long line of them. Apparently it really is in my blood.

Tuesday, December 11, 2012

III. Telling the Boys their Mom Has Cancer, an adventure in parenting

My husband, Chris, and I were struggling with how to tell our three boys - Jonah, age 19, Aaron, 17, and Henry, 13 - that I have breast cancer and needed surgery. We thought it was important for them to know, of course, yet we didn't want to unnecessarily frighten them or freak them out. Their grandfather (my dad, who we all called Papa) had passed away a little over a year ago from cancer (lymphoma) and we knew they'd make that association immediately. We had to emphasize that I wasn't going to die from this.

So how to discuss this with them delicately, giving them the information they needed to have, yet not too much information? What is the best language to use when having these conversations with your children, when you want to inform but not to scare them?

Enter Sandy Schindler, the medical social worker who works at the Marin Cancer Center; she specializes in family issues around oncology. She is a no-nonsense, tell-it-like-it-is woman; and she also reminded me of almost every Jewish mother I knew when I lived in New York.

She was not about to mince words. "Listen," she said to us, "You have three teenage boys. There's only so much they're going to want to know about their mother's breasts."

I cracked up then, and every time I've told this story to a mom-friend of mine with boys, they laughed too. Of course! It makes perfect sense, really, when you think about it that way. "Just the facts, Mom," was Sandy's best bit of advice to us.

The other thing she recommended was to tell our oldest son, Jonah, via Skype. This was about a week before he was to come home from college for Thanksgiving - and my surgery was scheduled for a few days after Thanksgiving. Sandy thought it would be best to give Jonah a little time to adjust to the news before coming home; that way, we might be able to have a more relaxed and fun Thanksgiving if all the boys had some time to process this news first.

Anyone who has used Skype knows that it can be a little bit awkward - sometimes the screen freezes, sometimes the words don't quite sync up with someone's mouth moving - but we forged ahead with Skype anyway, feeling this was the best option.

As it turned out, our timing sucked. On the Friday we decided to Skype, Jonah had suffered his first college relationship breakup. That same DAY. So of course we let him talk about it, and talk some more, until he was pretty much talked out. Then he talked about the classes he was thinking about taking next semester, and about the paper he had due for one of his history classes.

Finally, we saw an opening in the conversation. "Jonah, we have something to tell you," Chris said. "Mom has breast cancer. She's going to be fine, you need to know that - but she needs to have surgery right after Thanksgiving."

Jonah sat back in his chair, a look of shock on his face. "Mom, are you OK?" he asked. Fortunately, I felt strong enough not to cry at that moment, which I think reassured him. He asked a few more questions about the surgery, how long I'd be in the hospital, but that was about it.  Sandy's line about teenage boys and mothers' breasts was prophetic and accurate.

That night at dinner, we told our younger sons, Aaron and Henry. I started out by saying, "Listen guys, I'm going to be fine... but I have breast cancer. I need to have surgery but I'm going to be OK. This is a very different kind of cancer from Papa's, it is curable, and we will cure it." We also reminded them about my spinal-cord surgery, and assured them this would be a much easier, less complicated kind of surgery.

Aaron acted similarly to Jonah - fairly stoic, just absorbing the news quietly and without too much outward emotion. He simply nodded as he listened to the (bare-bones) facts about my situation.

Henry, my youngest (age 13), not surprisingly fell apart. He jumped up from the dinner table and into my arms, crying. Until this point, I'd been able to be strong "for the boys" - but this little guy, my baby, melted my heart and my own tears fell with his. I held him and assured him, "I'll be fine, I promise."

I meant it. I will be fine, eventually. That's really all the boys needed to hear - and I have no doubt they're subconsciously grateful we spared them any unnecessary details about, um, you know.

Friday, December 7, 2012

II. Five Stages of Whatever

OK, so I definitely have breast cancer. No more loopholes, no more undone tests or incomplete test results. The MRI, thankfully, showed no cancer on the left side. And the pathology reports from the biopsy were, all things considered, positive.

As I wrote in a group email to friends and family on November 16: "the lymph node is 'suspicious' but has thus far tested negative. The cancer in the breast is contained, slow-growing, non-aggressive (or 'lazy' as my doctor put it), the hormone receptors are positive (which is good in this context), and the HER-2 is negative (also good). So with the tiny exception being the fact that I have breast cancer, everything looks great!"

Ah yes, that tiny exception: I have fucking breast cancer.

Everyone knows about Elisabeth Kübler-Ross's "Five Stages of Grief," right? They go like this: Denial, Anger, Bargaining, Depression, Acceptance.

Well, I went straight to Anger first. This is bullshit, I thought! I am a person who does not drink, does not smoke, is not obese, does not eat junk food, and sweats buckets several times a week in Bikram Yoga classes. I do everything right; I get mammograms every year. I'm not supposed to get goddamned cancer!

My second stage was Whining. As some but not all of you know, I had serious spinal-cord surgery in 2005, to remove abnormal (congenital) lesions from my spinal cord in my neck. When I was diagnosed, Chris and I traveled to see four different surgeons. We were told pretty much the same thing, which was: well, you could do nothing, but one or more of these lesions might burst in your spinal cord and you could be paralyzed from the neck down; or, you could have this extremely dangerous surgery (that came with no real guarantee of success) to have the lesions removed - and oh, by the way, there's always a danger in spinal cord surgery of something going wrong and so you may end up paralyzed from the neck down.

My Whining stage went like this: whyyyy meeee? I already went through all that spinal cord shit, which has left me with mild (but chronic) neurologic issues seemingly for life. Isn't that enough for one person to endure? I felt sort of like a six-year-old who gets blamed for his brother's transgression: "Not fair!"

Third came what I'll call the Whatever Stage, otherwise known as "Why not me?" After talking to some of my friends and doing a little bit of research, I realized how dreadfully common breast cancer is, especially here in Marin County, CA, where I live. Rates in Marin are apparently 10 to 20 percent higher than in the state generally - and breast cancer is already crazily prevalent in California (and really, almost everywhere). So: it's going to happen to lots of women - why not me?

Fourth, aligned with the Kübler-Ross model, I did feel depressed. This was related to Stage #3, Why Not Me?, in that I wanted to feel more unique and special, and instead I felt like just another statistic. I know, what a baby, right? It sort of reminded me of when I was in labor for the first time, with Jonah, and I went to my OB's office to get checked. The doctor told me I was 4 cm dilated already, and that I should head straight for the hospital. Holy shit, I'm having a baby! I thought. This is amazing! But the blasé, unimpressed stares of the nurses at the office completely deflated me; their faces said, "Lady, we see this every day. Get over yourself." Similar thing with the breast cancer: thousands of women deal with this every day, Abby. Get over yourself.

And finally, yes, Acceptance. I looked into the beautiful blue eyes of my husband, Chris, and he looked at me, and we said to each other: OK, this is our path. Whatever we need to do to completely rid my body of this shit, we will do. Just like the Obama campaign said: Forward. And for me personally, acceptance came much easier after our country dodged the bullet that could have been a President Mitt Romney.

Next: Telling the Boys Their Mom Has Cancer, an adventure in parenting.

Thursday, December 6, 2012

I. Abby's Crap News - aka My "Journey" with Cancer

Remembering Before I Forget: the Beginning

As will be obvious, I've never created a blog before. Please excuse the nonexistent graphics and layout; I'll get it figured out once Jonah gets home from college for winter break. There is no way I can do that part without a tech-savvy teenager. And god forbid I should pull Aaron away from his college applications.

So here we go, in the meantime:

I have breast cancer. I found this out about two months ago (October 2012) when Chris felt a lump in my breast (thank god, thank god, I have a husband who still touches my breasts - otherwise who knows when I would have found it? I admit, red-facedly, that I do not do regular "self breast exams" as all we women have been instructed to do. I simply relied on my yearly Ob/Gyn appointments and yearly mammograms).

Puzzled, Chris asked, "Has this always been here?" No. It hadn't. It felt like a small dried pea about a half an inch below the surface of my right breast. At the time, I wasn't that worried; after all, I'd heard dozens of stories from sisters or girlfriends who had benign cysts or dense tissue or other non-cancerous things in their breasts. It's probably nothing, I thought. I had gotten mammograms every year since age 35 or 40 (I'm 51 now), and in fact had had a clean mammogram just this past April.

The end of October brought an ocean of tests: a diagnostic mammogram, an ultrasound, a needle biopsy of my breast and lymph node, an MRI. After the ultrasound, the radiologist called the "mass" in my breast "concerning" and said my right lymph node was "plump" (this is not a pleasant term in the world of radiation oncology).  She said she was pretty sure I had cancer.

The needle biopsy was awful, painful, and I cried throughout - not just because of the pain but also because 1) I was pretty sure by then I had cancer; and 2) I made the mistake of listening on my iPod to a playlist my son, Jonah (in his freshman year at Brown) had made me for my birthday - full of songs rife with meaning, songs that made me miss him. I was an emotional train wreck - plus it really fucking hurt when the needle was digging around trying to find my lymph nodes under my arm.

My first appointment with the breast cancer surgeon, Dr. Leah Kelley, was on October 23rd. This was when she told me and Chris she was "80% sure" (pending the pathology report) that I had breast cancer, and that it may or may not have spread to my lymph nodes. I cried, of course, but was beyond gratified to discover that Dr. Kelley was a hugger, a real mensch. She did not hesitate to put her arms around me as I wept, sputtering, "I just need you to promise me that I won't leave my three boys without a mother."

She promised. She said that breast cancer is very curable, especially in a young(ish), relatively healthy woman such as myself. She said we needed to wait for the results of the pathology report to get more information on exactly what we were dealing with, but in the meantime she wanted me to schedule an MRI to look at the tissue in both breasts - to be sure the tumor was only on one side.

October 31: Halloween (insert lame joke here) was the day we met with Dr. Kelley and got the definitive news: I did have breast cancer for sure. The preliminary biopsy results showed a "low-grade, mucinous" (which is good) cancer, one which was not aggressive (Dr. Kelley called it "lazy" or slow-growing - also good). The lymph node at this point was "suspicious" but inconclusive, according to the initial biopsy result.

Dr. Kelley's best guess was that it was a stage 2A and that the mass in the right breast was about 4 cm long by about 1 cm wide. Because I'm not a person with big breasts or with a lot of extra weight on me, and because of the relatively large size of the tumor, it did not make sense in Dr. Kelley's judgment to consider a lumpectomy - the cosmetic result would not end up being a desirable one. She recommended mastectomy with a sentinel node biopsy - which means cutting out part of the lymph node and doing a biopsy during the surgery to see if that's cancerous too. If the lymph node showed "involvement" at the time of surgery, Dr. Kelley would just keep on cutting out more & more lymph nodes until she was confident I had "clean margins."

To be continued... obviously.