Side Effects, Special Effects

She has not lost all her hair just yet. A few stragglers are holding out.
She is still working full time.
She longs for a good manicure.
She worries about her cuticles (infection risk).
She feels some things right away, like a burning sensation in her nose from a steroid shot that immediately follows chemo.
She feels still feels that same kind of subtle, morning sickness-ish nausea for a few days right after treatment.
She gets cravings. Sometimes only French fries will do the trick.
She has experienced some slight darkening of her skin. It shows in her hands mostly.
She gets emotional, especially the first few days after a treatment; a kind of pervasive sadness that has its moment then passes.
She looks fantastic.
She is not inclined to wear a wig any more than necessary.
She needs about one additional day after every treatment cycle to really bounce back.
She is sad to be losing her breasts. She is, however, determined to be aggressive. She will get reconstruction when all is said and done. She might go “a little bit bigger.” She tells her husband that “a little bit bigger” means a little bit bigger.
She looks quite fetching in a hat. She needs to find some that will work in warmer weather. She does not want to do the “cancer scarf thing.”
She feels it getting smaller. The doctors confirm this. She wishes it were smaller still.
She has completed the first four of her eight chemotherapy treatments. These first four were the harsher drug combination, Cytoxan and Adriamycin. On April 10 she begins the second half of chemo with the drug Taxol; milder overall, a new set of side effects to contend with, and it can only be administered via a slow IV drip that takes about four hours. She is not looking forward to this.
She is beautiful. She looks no different. When she stands next to me, she looks even better.

She had a big date with her thuggish-looking husband last weekend. We went to see Patrick Stewart in Macbeth at the Brooklyn Academy of Music (courtesy of my wonderful nephew Patrick.) She held up great through a chaotic, whirlwind of a trip, and that Saturday night she looked and felt fantastic. After an incredible, mind-blowing three-hour production we set off into Park Slope in search of a late dinner when a craving struck: steak frite. Nothing else would do. We found a charming little bistro on 5th Ave called Canaille. What I have come to know as the Mary Rose Effect immediately set in. They kept the kitchen open later, the proprietor gave us a great price on an outstanding Cote du Rhone, the steak was cooked to perfection and we were generally doted on. If we had not left when we did, I’m sure withing the next five minutes the owner would have been kissing her hand. It was well after midnight when we got back our friend’s town house. She put Oona to bed and promptly set about making the perfect Easter baskets for the next morning. The end of an all-things-considered-pretty-perfect day.

She is Supergirl.

(posted by James on 3.29.08)

The Children

“Do they know?”
“What do they know?”
“How did you tell them?”
“Are they OK?”

These questions and variations on them have been with us since the diagnosis, and now that we are well into treatment this seems like a good moment to bring you all up to date on how Brendan and Oona have been dealing with cancer in the family.

When Mary Rose was first diagnosed, the questions of when and how to tell the children were complicated by not really knowing what to tell them. Do we wait until all the test results come in? How then to explain all the doctor appointments? Why is Mama home so much these days? Not wanting to delay the inevitable and without perfect knowledge in hand, about two weeks after the cancer was discovered we spoke as honestly as we could to each of them; honestly but hopefully.

We sat down with Brendan first and told him everything we knew thus far. As a 17 year old he could handle and deserved the full truth. Some of you may know that Brendan has expressed an interest in pursuing a premed track in college this fall. With that in mind we were fairly detailed in our explanation, and giving him as much information as we had at that point was important in helping him deal with the news. He was strangely relieved in one respect; sensing an unusual heaviness of heart in us for the past few weeks, he was afraid we were having marital problems. We assured him that of all the problems we have, THAT was not one of them!

Telling Oona was a trickier proposition. There are entire sections of bookstores devoted to young children dealing with illness in the family, and the spectrum of opinion ranges from full disclosure (“All About Aunt Agatha’ s Aneurism”) to the cloyingly vague (“Dad’s Super Extra Big Boo-Boo”). Not wanting to go so far as to use the c-word right out of the gate, we chose a path somewhere down the middle, telling her that, “The doctors found a sickness in Mama and they believe they can make her better. It will take a while to make her better, probably until September, and the medicine the doctors have to give Mama will make her feel really bad sometimes, but she will be OK.”

Experts will tell you that children naturally react to news of this magnitude by wondering how it will affect them. What they don’t tell you is that the more smart, savvy and saucy among them will come right out and say, “How does this affect me?” Trying to keep a straight face after she said that, we told her that things would be a little different for all of us. Sometimes Mama would not be able to do the things she usually does with you, but she will be home more, so there are good things with the bad things. Oh, and she’ll probably lose her hair.
Oona: “What? I don’t want you to lose your hair!”
Mary Rose: “I know, sweetie, but I probably will, and when I do Daddy is going to shave his head.”
Oona: “WHAT!! I DO NOT WANT BALD PARENTS!”
Which led us next into the conversation about wigs, hats and under what conditions she would allow us to be seen by her friends. After all, cancer is one thing, being embarrassed in front of your classmates is WAY further up the food chain.

It’s been fairly smooth sailing with the two of them since we broke the news. Brendan is always willing to pitch in a bit more, always curious about the course of treatment, and certainly doing his part to just be normal here in the new normal. Oona is handling it all quite well, asking the occasional question but not dewelling on it too much. She’s flexible when she needs to be. She has determined that if Mama is getting breakfast in bed on the weekend then there’s no reason why she shouldn’t jump into my warm spot and be served as well. She likes Mary Rose’s wigs, has strong opinions about hats and coverage in general, and she is thoroughly dismayed by Daddy’s whiskery head. I’m not too thrilled by it myself.

We’re all looking forward to a trip to NYC for Easter weekend. A break from our ice-bound routine, a chance to see family, and hopefully a touch of spring.

Chemo 2, Blood 2

We have been told that the way you react to the first chemo is a reliable indicator of how you’ll react to subsequent treatments. We were also told that, for a woman, the way you experienced morning sickness is a reliable metric for how chemo will affect you. Sure enough, this turned out to be the case. Mary Rose had her second chemo on Thursday, February 28. The anti-nausea drug they administered before the treatment and the one she has at home kept any overt nausea at bay. A few days of mild queasiness, some fatigue, some sensitivity to smell, and by the following Tuesday she was very much herself. Between time in the office and working remotely from home she is still putting in full time hours. The life of our household continues very much as usual. Welcome to the new normal.

Her hair in its current, very cute, pixie iteration is still pretty much intact. Thinning, falling out by the day, but at the moment it just looks short and saucy and still fairly even overall. I on the other hand took the plunge last Sunday, and with the help of my good friend (and licensed cosmetologist) James Herrera, in a gesture of solidarity with my dear wife, shaved my head. You’ll notice that there is no picture of the aftermath included here. Vanity will not allow. Besides, my mother is very upset by the notion of her youngest, her baby, being bald. Intimations of what we can only imagine. So, the bottom line is Mary Rose looks very cute and saucy and I look like a soccer hooligan. Fair enough. The least I can do.

We have begun to settle in to the treatment schedule. We calculate the date of the last chemo, the interim before surgery, surgery itself, the six weeks of radiation to follow. We can look ahead to the completion of treatment sometime around the beginning of August. We just can’t change it, compress it, alter it in any way. It’s a curious thing, being locked into it like that, no room for maneuver. Like being in a tunnel. You can see the point of light ahead, you’re grateful for it, but you just can’t get there fast enough.

By the time blood work rolls around again, one week after chemo, she is very much on the upswing as far as energy, appetite and activity. Her white count was 2.6; like before, where they expected it to be and poised to rebound. And so we start another “good week”, the second half of the two-week chemo cycle; days so close to normal you can almost allow yourself to ignore the intruder. I served the girls breakfast in bed this morning (a new Saturday ritual) before they drove off for their busy day of dance class, library and sundry errands. We have a micro-date this afternoon while Oona goes to a splash party, my naked pate and the wig of her choice on the town!

Before the last chemo Mary Rose was examined by the oncologist, Dr Niegowska, who said she could feel that the tumor had started to soften and shrink, clearly responding to the drugs. Encouraging news, confirming what we have believed since treatment began. Every day there is less cancer than the day before. Every day we move forward. Every day is its own little victory, and a blessing.

(posted by James on 3.8.08)

What’s That On Your Head?

(Recommended listening to go with this post: Wig by the B-52’s. Obscure, but worth the search. I found it on YouTube with a very saucy video attached to it. You have been warned.)

The loss of hair is imminent, so this week has been all about the wig. Mary Rose began the process of preparing for hair loss a couple of weeks ago by letting Oona cut her hair to a chin-length bob (her stylist evened things out later.) She felt good about giving Oona a measure of control over the transition to come, and Oona of course thought it was simply a blast.

Mary Rose looked fantastic with this cut, as you can see, and she’s been feeling pretty good as well. So much so that we have both felt a bit of a disconnect when thinking about the hair loss. She looks and feels so much like her usual self that it seems almost odd to suffer such a dramatic side effect. But from what we’ve been told, sometime right after treatment 2 is when the hair is going to go, so wig shopping we went.

Rather than just waiting for her hair to fall out as is or going to the other extreme of preemptively shaving her head, the salon staff recommended that she cut her hair very short as a final step; less to fall out when it does and she still avoids the discomfort of shaving. So we go from Bob to Pixie:

And of course, she is stunning once again. This cut we consider a preview; months from now, before the year is out and her hair is growing back again we will see this look return.

But to the wigs. Practical considerations aside, there is an irresistible element of playing dress up to all this. Which is why, with just a bit of urging from her husband, Mary Rose ended up trying on a wig I call the Bond Villianess:

It works. Admit it. Don’t take my word for it either. A few people who got a sneak preview of this one agreed that if anyone could pull it off, Mary Rose could. Such a wig necessitates major wardrobe modifications, however: leather jumpsuits, thigh-high boots, concealed weapons, etc. A dangerous beauty indeed.

The primary need though is for a practical wig; one that is as close as possible to the hair she leaves behind, that serves her well at work and at home, and that, as she puts it, “makes everybody else comfortable.” And so she settled on this one:

A great choice. So subtle, such a natural fit for her that you’d be hard pressed to tell it’s a wig at all. And so the practical need is satisfied. But our wig adventure does not end here.

Because she wanted to, because insurance will cover it, and because why the hell not, she got another wig. This is the fun wig. The play wig. The wig that gives a big, fabulous middle finger to cancer. The wig that will go on dates. The wig as armor against the indignities of the disease. The wig as metaphor for hope and defiance. Ladies and gentlemen, I give you Red Fire:

Take a minute to catch your breath. It took me a few. Stunning, yes?

We took it out for a little test drive this morning, walking from the salon to a little breakfast place across the street, The Bayou Kitchen. She was the picture of glamour in her flowing red locks, her white parka and her big sunglasses. I said to the waitress, “Isn’t my wife smokin’ hot?” and she heartily agreed. On the rack of hot sauces I found this particular bottle that sums up a lot. I will let it speak for itself:

(posted by James on 2.29.08)