Coda

Mary Rose returned to work back on October 6, plunging in full time with great energy and determination. It was time and she was eager for the challenge. Resuming what had been our regular schedule for so long was a bit disorienting at first. The months of treatment and medical leave were always something of an improvisation; a narrow focus to just get through the day, the week, the next phase. The regular patterns for the family of work, school and my freelance life seemed almost unfamiliar when they returned, but appreciated nonetheless. Welcome back (to some extent at least) to the old normal.

After an initial adverse reaction, Mary Rose adapted very well to Tamoxifen (the estrogen blocking hormone therapy.) A course of treatment that encompassed the traumas of chemo, surgery and radiation is now reduced to just one pill a day; a small reminder of much bigger things that came before. Follow-up appointments with her oncologist, radiologist and plastic surgeon were promising. She endured radiation very well, and the prospects for further reconstruction are good. The ongoing concern is the prospect of recurrence. This is the known unknown, the undertone of concern beneath the surface, the vigil that does not end. This is where statistics and individual physiologogy and psychology clash, with no predictable outcome. Tamoxifen will continue to do its job, possibly supplemented soon with a complementary drug to increase its effectiveness. Diet matters, fitness matters, outlook matters–all these things can improve the odds, but there is and can be no certainty. So we live with uncertainty and vigilance, but also with determination and hope.

Meanwhile, how about that sexy short hair, huh? She gets so many compliments she might just keep it that way. It’s all good from my perspective. between hairdos, wigs and baldness there’s been something new to spice things up all year long.

We close 2008, our annus horribilis, forever changed by cancer. Not defeated, not diminished, but different. Everything about life is thrown into sharp relief: what really matters; what’s worth living for, fighting for; how fragile and precious it all truly is.

Our sincere and abiding thanks for all the love, support and prayers you have shared with us this year. They truly matter, and we feel blessed to have received them. Our blessings to you in turn for a healthy and prosperous new year.

The calendar turns, the earth moves imperceptibly, promises and plans are made. Life, this beautiful life, goes on.

The Unforgettable Fire

A typical morning: Up before 7, dressed and out the door by 7:15. A short drive to Maine Medical Center’s radiation clinic, use the keypass to get into the little radiation parking lot. Down one flight to the clinic, into the johnny, ready for a 7:30 appointment. Things run close to on time that early in the morning. Into the treatment room, assume the awkward position, arm bent strangely over head. The machine moves into position, aligning to marks in the skin set weeks ago. A few words from the technician, ready, aim…

Home a little after 8. Maybe stop for coffee on the way and plunge right into the day. Maybe, in the later weeks, go right back to bed, absord another hit, reboot in an hour or so. Serious moisturizer on the treatment area, enough to soak through clothes. Soon the day is in full swing, so close to normal, so close.

Mary Rose began her radiation treatments on Monday, August 11. After the weeks of anxiety and suspense while she healed from surgery, it was an immense relief when this last stage of treatment finally began, just as the ideal window to commence was starting to close. The purpose of radiation was twofold: to destroy any possible, undetected cancer cells in the local area and to make the point of origin for the cancer an inhospitable place for any possible return. Smoke the enemy out of his hiding place, kill him, burn his village to the ground. It would take 28 treatments over almost 6 weeks to accomplish this.

For all the fear and visceral reaction it naturally conjures up, on a day-to-day basis radiation is an almost subtle treatment. There is no pain during the procedure, and the side effects can take weeks to emerge. The greatest concerns were damage to the skin to a degree that would inhibit future reconstruction and debilatating fatigue. I’m pleased to report that, like with her entire course of treatment to date, Mary Rose’s reactions were on the positive end of the spectrum. Her skin held up well, the fatigue was mild and late in coming, the prospects for more reconstruction are good. Mostly, it was just a drag; the early rising, the discomfort, being locked into treatment 5 days a week. She stayed home while I took the kids to the Hamptons for a few days at the end of August and then brought Brendan to college on Long Island. She made good use of the time, but a very lovely beach seemed very empty without her.

She kept very active and healthy throughout the 6 weeks. Most days she would show up at my office door at some point in sneakers and shorts and ask (in that way for which there is only one answer) if I wanted to go walking with her. I would dutifully stop pushing pixels and comply. Still on medical leave, she could attempt to catch up on tasks and projects that months and years ago seemed impossible. The long awaited, seemingly mythic yard sale may yet happen after all. Many right-wing and easily manipulated media outlets will no doubt celebrate the day she returns to work and no longer has as much time to launch verbal fullisades across their digital bows.

With radiation as a manageable routine with a fixed terminus, we started to see around the next corner. This will end. What began in unspeakable fear and horror will end in a mild burning sensation, the journey between chronicled in scars. What next? The killer has been beaten back. How to keep him from returning? We met with Dr Gerburg Wulf at Beth Israel in Boston on August 22 to discuss the long term prospects. She outlined the options for multi-year hormone therapy, recommending Tamoxifen to block the effects of estrogen until menopause sets in, followed by aromatase inhibitors to suppress estogen production; a course of low-level treatment lasting five years, all aimed at dramatically reducing the chances of recurrence. And what are those chances? I could catalog how every aspect of Mary Rose’s treatment, temperment, spirit and determination affect that possibility, but I think instead I will simply quote Dr Wulf when she said, “The odds are overwhelmingly in your favor.” I’ll take those odds any day.

On September 6, with a new season and a new school year for the kids underway, we went for a follow-up visit with Dr Ana Niegowska, Mary Rose’s oncologist at Mercy Hospital. Dr Niegowska was very pleased with the course of radiation to date and with Mary Rose’s overall condition. There were many questions about hormone therapy, possible side effects, prospects for the future. I had a question about language. Radiation would soon be complete. How then would we describe Mary Rose? In remission? A breast cancer patient with no detectable breast cancer? In a 5 year limbo without definition? What would be the appropriate terminology? Dr Niegowska seemed almost puzzled by the question at first, and then simply said, “As far as I’m concerned she is cured.”

Cured.

The word used to seem impossibly remote, presumptious to even wish for or utter, all determination aside, and yet here we were. We knew the course of treatment was curative all along, we knew she was progressing towards this, but it was the first time a doctor said it. Cured, meaning there is no more detectable cancer and they are going to do their best to keep it that way. Cured, meaning that breast cancer can be spoken of in the past tense. Had, not have. Cured, meaning welcome to the other side of all that. She was poisoned, cut and burned, she walked through fire to get here, she is not the same but she is still herself, and she is here.

Welcome.

Healing

(Note: The reason for the delay writing a new post will, I hope, become apparent as you read. We were waiting for an issue to resolve itself, which by now it has sufficiently. –  James)

Mary Rose began her medical leave from work the day before her surgery on June 17. Having worked all through her chemo and the run up to surgery, she would now have the time to recover and prepare for the last stage of her treatment, radiation. The first week or so after the procedure was an interesting period of transition. In many ways she bounced back physically rather quickly, and she was of course very relieved by the success of the surgery, but it also seemed in those days that the cumulative effect of everything she had been through up to that point began to show. An understandable weariness perhaps, or a kind of recognition of what she had experienced thus far that could only reveal itself in a pause, a relative silence. 

The immediate post-surgical period was also what you might call the days of plenty. She was kindly deluged with food, flowers and treats of every kind. It was a lovely outpouring of support and it certainly lifted her spirits with each passing day. I was also something of a beneficiary of all this; with so many complete meals being delivered to our doorstep my duties in the kitchen were almost nonexistent.

After little more than a week of recovery, Mary Rose was clearly on the rebound. Out and about on her own, driving, exercising, running errands, and plunging into an endeavor she had been looking forward to doing on her leave with an intensity akin to lust: crossing items off her epic to-do list (also known as “the pile”). It soon became apparent that she would not even need any physical therapy. She quickly got over any pain from the surgery with minimal medication, and her range of motion was fairly undiminished. She just had to be careful not to push herself or to do any heavy lifting, but that’s why God invented husbands anyway.

The complications began to emerge when she visited the plastic surgeon to check on the progress of her healing. The ideal post-surgical scenario was that by two weeks out she would be sufficiently healed to finish injecting the tissue expanders (temporary implants) that were put in place during the surgery. Then, with the expanders at their target size, radiation could begin the following week. If that timeframe held, she would have completed radiation by August 22 and we could have actually had a family vacation during the final week of the summer; a chance to celebrate, to put a period on this long, terrible sentence, and maybe even catch our breath for a moment before the tumult of back-to-school. I wanted this very badly for all of us but especially for her. I wanted this to be over, to whatever extent it could be considered over, while it was still summer. I wanted her on a beach, sand between her toes, the burden lifted, having come through the fire to a place of hope and healing. This was not to be.

The first check up after surgery revealed a large amount of scabbing over the incision on the right side, the one that would be treated with radiation. It was enough of a concern that her plastic surgeon, Dr Flaherty, felt that the wisest course of action would be to surgically remove the scab, redo the incision, and for good measure reduce the volume of the right implant to relieve a degree of pressure. This was the equivalent of turning the healing clock back to zero, thus delaying the onset of radiation (the primary concern) and throwing our vacation plans right out the window (a relatively minor but nonetheless heartbreaking concern.) Even after this corrective procedure though, it was far from smooth sailing. Much of the difficulty lay in the fact that after the mastectomy she was left with “thin flaps” (you’d think there would be a more artful or scientific term.) After removing the breast and an additional margin of tissue on the right side for safety, what was left was less than ideal for healing. There was not a lot of tissue remaining beneath the skin to work with, and it just needed more time and care to be able to stand up to radiation. 

This was a very frustrating few weeks. When would she be sufficiently healed? No one could say. When would radiation begin? Depends on the healing. Could anything be done to make her heal better or faster. No. When therefore would this whole thing be over? Not when we thought, not soon enough. After the regimen of a chemo schedule, after the technical certainty of surgery, we were now in an unfamiliar holding pattern. Waiting. Just waiting. Meanwhile the clock was ticking and the ideal window to begin radiation was closing. The frustration and worry reached a peak when, at about three weeks after surgery, we met with the radiation oncologist (an able practitioner who comes up a bit short in the bedside manner department). He expressed outright alarm at the delay caused by repairing the incision and all but flatly declared that Mary Rose would not have time to get her implants expanded any further and that she would remain the size she was. This was extremely upsetting to her, the notion that she would not be able to restore her appearance. It felt like something else being taken away, after she had already lost and endured so much. On top of all that, this doctor’s sense of urgency about starting radiation, while well founded, was so bluntly expressed that it needlessly compounded the fear of recurrence. A sense of danger that we had not felt since the original diagnosis was beginning to rear its ugly head.

It took a few days for some perspective to be restored. Dr Flaherty assured Mary Rose that there were other reconstruction options to consider down the road, even if the ideal scenario of being fully expanded before radiation could not be realized. She continued to heal, slowly but surely. A subsequent visit to the radiation oncologist was more reassuring. Another visit to Dr Flaherty. Still on track. But what was more significant than the assurances of doctors was her own quiet strength in the face of a setback. She was thrown off balance. She recovered. She was disappointed. She absorbed it. She moved on. By the first week of August she was in for a dry run of her treatments; rehearsing the routine, machines targeted and calibrated, getting familiar with a whole new set of possible side effects. She was at what you might call the outer limit of the preferred time to start radiation, but still in an acceptable range. Her first treatment was on Monday, August 11; the first of 33, every Monday to Friday for six weeks.

From the outset of Mary Rose’s treatment, all the way back in the dark days of February when chemo first began, we took comfort in the sense that we were on a path: first chemo, then surgery, then radiation. We were given a road map, and our sense of progress along the road was confirmed on a regular basis; yes, it’s working, it’s shrinking, it’s coming out, etc. July was our first real bump in the road, the first time things didn’t go as planned in the context of treatment, the first time the best case scenario of the this worst thing ever didn’t pan out. Of all the possible complications we could have encountered along the way it is certainly on the milder end of the spectrum, but it was jarring nonetheless, a reminder that cancer offers very little in the way of certainty. The question you keep circling back to is not will everything go as planned, but what will you do when it doesn’t? When the complications push back, when you lose your bearings, what will you do? Will you fall? Will you crumble? Or will you dig deep, push ahead, and find your way back to the road.

The Killer in the Room

One of the more difficult and surreal aspects of Mary Roses’s experience with cancer has been the amount of time she lived with the tumor since diagnosis. The nature of the tumor and its size relative to the affected breast dictated that she could not immediately undergo surgery when it was discovered. So, the chemo began instead, to shrink the tumor, create a better margin for surgery, and to work systemically to kill cancer cells in the affected area and, if that was the case, beyond. The course of chemo and the pause before surgery was a period of almost 5 months, during which life was, as I like to describe it, about 90% normal, but the knowledge of the tumor itself would often intrude. Not thoughts of cancer in general, nor the amorphous fear of bad outcomes, the dark litany of “what if’s”, but the recurring awareness of the thing itself. The physical presence of it. Right there, in the breast, the upper right quadrant of the right breast, just millimeters below the surface. The killer in the room.

We could be in the midst of the most ordinary routine, standing in the kitchen talking perhaps, and my mind would be drawn to it. There it is in front of me, the thing that’s trying to kill my wife, that we are trying to kill. Right beneath the skin. So close. You fucker. If I could only get my hands on you. The thought would come and go, defiantly suppressed, only to return again perhaps days later, and so on.

How often Mary Rose’s thoughts were likewise focused I can only imagine. There were several times when we would be laying in bed and she would say that she could feel it shrinking, feels the drugs working, feel the enemy under assault, weakening. She would sometimes note how the appearance of the breast seemed to be changing for the better over the months, but I think she mostly tried to avoid it. The oncologist would examine her and ask if she had felt with her hands how it was getting smaller, or if she wanted to right then and there, but she would not. She tried to avoid it as much as possible, and I did the same. We remained focused on the surgery to come, because for all the progress that the chemo made, the killer was still with us. Only surgery could remove it, reveal the extent of it and discover what more, if anything, there was to learn about it.

On June 17 we woke up at 5 in the morning to report to Mercy Hospital by 6. The check in and prep was very efficient, the staff very helpful and reassuring. Mary Rose was in good spirits. She would be having a full double mastectomy immediately followed by plastic surgery for temporary, tissue-expanding implants. By 7:20 she was on her way to the OR. At around 9:45 Dr Quijano called me out of the waiting room. She told me the surgery had gone well. No surprises. It would be about another hour for Dr Flaherty, the plastic surgeon to finish his part.

I want to focus on this moment because I can’t overemphasize the importance of it, the significance of what little the surgeon said, of what she did not say. It went as planned, as hoped. There was an ample margin of healthy tissue around the cancer to work with. She didn’t find more of it, it didn’t turn up beyond where it was supposed to be. What was left of the definable tumor was isolated, cut out and destroyed.

I have never felt such a divine sense of relief in my life.

By 11 she was out of surgery and in recovery. By 1 she was in her room. She stayed the night. I stayed with her. By 4 the next day she was home. I played nurse, drained drains, charted meds, spread the news. The torrent of flowers began.

With surgery a page has been turned. We have arrived a place of possibility, not without risk, but of possibility nonetheless. The killer has left the room. He may have left some weapons behind, he may not have. He may have left a door ajar or he may now be locked out. We don’t know for certain, can’t know yet. Mary Rose may be without cancer at this point, or there may be some residual that only the radiation can eliminate. Or perhaps radiation will turn out to be an insurance policy or sorts, or a few last shots fired into the enemy’s grave, just for good luck. Time will tell. What we do know is that the source of her cancer, its point of origin, its most lethal expression has been eliminated, and we have moved from the certainty of the disease to “maybe”. Maybe it’s gone. Maybe it’s 99% gone. Maybe it will be completely gone by the end of radiation. Maybe it will never come back. While we would all like a guarantee of such things, sometimes the best we can do is a maybe, or a maybe with the odds moving in our favor.

Sometimes maybe can be a wonderful thing.

The End of the Beginning

Thursday, May 22 was a typical Maine spring day, which is to say not very spring-like at all; mid-50’s, rainy, a cool breeze off the ocean, a pervasive sense of the season being held back, some last vestigial ghost of winter unwilling to concede. It was also a day when the physical universe seems to conspire to thwart you. Things stick and fall and pinch. Traffic meanders like a parade without purpose, people treating green lights like an overly generous offer they dare not accept. So, delayed, harried, but no less determined, we arrived at Mercy Hospital barely on time for a 9:45 appointment.

The ritual begins as usual with check-in at Oncology, but we had a special guest this time. Veronica, aka Red Fire, aka the red wig is making a rare appearance today and the staff is speechless. Mary Rose looks stunning and is told as much by everyone who sees her once they recognize that it is indeed her. Off to the waiting room then where the standard 10 minute wait takes the usual 20 minutes. Then the exam. Mary Rose is weighed, her temperature and blood pressure are taken, the usual preliminary questions by the nurse, and then the wait in the exam room.

Dr Niegowska soon joins us in the exam room and she is her usual pleasant self, all the more so seeing Mary Rose in her saucy wig. She questions her about the past two weeks, which were very routine; the same mild reactions to treatment, the same rhythm, rise, fall and recovery. She is genuinely pleased by the progress so far. The next appointemtnts are discussed. We move on.

The Oncology treatment room is very crowded this morning. All the treatment chairs are full and mary Rose is directed to another room to wait. Upon entering I am taken aback by the sight of an acquaintance of many years occupying one of the chairs. An artist, a regular from my bartending days, someone who lived in New York while I was there going to college and who, like so many I’ve known, felt the tug, the necccessity to return to Maine. He is undergoing palliative treatment for a rare blood cancer. He is candid about outliving all diagnoses to date. He talks easily about his brushes with death, his newfound faith, the morbid rise in the value of his art. I listen to him and as I do I feel the psychic armor that I usually wear to deal with this place come crashing to the floor. I’m reminded again of the enormity, the pervasiveness, the many faces of this disease. I say inadequate things and he receives them kindly, knowing their inadequacy and forgiving the attempt without saying a word.

Shortly thereafter the very same chair is available and her treatment begins. They take some blood and send it to the lab. The laptops come out and we get to work. The report comes back and the numbers are good. The IV is hooked up to her port. The saline flows, the Benadryl is introduced. She fades for a few moments and then by around 1:00pm the Taxol is hooked up and the 3-hour drip commences. Our surreal routine continues; stubborn hard drives and network connections strangely seem more important at the moment than the fact that she is once again being poisoned. At around 3:00 I tell her I left something in the car. I slip out to get some roses, pink for obvious reasons. She is genuinely surprised although she should not be, this day being what it is. By 4:00 the drip is complete. The nurses bring her a bottle of something sparkling. There are hugs and good wishes. As we leave the hospital, the beautiful redhead on my arm attracts no end of admiring looks.

And that was it. That was chemo. The last of 8 treatments over 16 weeks. Finished. Complete.

I have been chided on occasion for describing Mary Rose’s experience with cancer, and by extension mine and the children’s, in martial terms. Don’t think of it as a fight, some people say, think of it as a journey. Sorry. Can’t do it. This is a war, and she just won a battle, perhaps the hardest battle of all to come. She stood up to chemo. Her spirit and determination never faltered, not once. She worked through it all with an undiminished sense of purpose and clarity. She kept her life going full steam, all guns blazing, and never stopped believing that with each day, each treatment, each indignity, every drip of poison in her veins she was getting better. Because she is. Yes, I call that winning.

7

On Thursday, May 8, Mary Rose had her seventh chemotherapy treatment, the seventh of eight. What began as a process fraught with worry and even dread has become almost routine. The usual check in, the blood work, the exam, all ritual now. We work on our computers, make calls, have lunch and manage our lives while the machines hum and whir and the medicines drip and other patients come and go. It is amazing what you get used to here in the new normal. The tumor continues to shrink, the oncologist is pleased, the date for surgery is set. The steroids flow, she rises, she falls, she finds her equilibrium again.

We calculate the numbers as they stand now:
14 days from chemo 7 to the final chemo 8
The tumor estimated to be 2.5 cm or less, down from 6-7
3 weeks from the final chemo until the surgery
3 weeks to recover from surgery before radiation can begin
6 weeks of radiation, 5 days a week
7 months from diagnosis to the end of treatment

She is close to completing the first and perhaps most trying phase of this journey, so close that it is hard (for me at least) not to feel impatient, not to want to crunch, compress, obliterate the hard math of time and treatment. Can we finally just get in there and kill the fucker? Have we not been here long enough? Can we move on please?

No. The numbers do not yield, so she endures. Still working full steam, making dishes for school events, chaperoning a field trip, the usual weekend bustle of Oona’s dance class, trips to the library, play dates and even cooking when she can squeeze it in. As if the cumulative effects of chemo were not enough, on top of everything else she has been battling a persistent cold for the past two weeks. Believe me, the moinker of “Supergirl” is well earned.

Beyond the numbers we know are the calculations we cannot or choose to not yet confront, hovering around our more pressing cares: survival rates, percentages of recurrance, mitigating factors, the months, the years before she can define herself as cancer free; complex equations that will one day demand to be solved. For now, a more simple math is our concern. Addition. Get through today. Add tomorrow. What does that equal?

Time accumulates and we move closer to chemo number 8. Some days she feels the weeks of treatment catching up on her. Some days she feels something close to her old self. Sometimes the “what ifs” and the “whys” intrude. Some days are unrecognizable from the days that came before all this. And sometimes, in response to some kindness, some gesture that is the least of what she deserves, she feels something that is so indicative of her grace and spirit that it leaves me speechless.

Lucky.

She flies through the air with the greatest of ease

On April 10th Mary Rose began the second half of her chemo treatments, bidding good riddance to the double whammy of Cytoxan and Adriamycin and a warm welcome to the milder Taxol. We were somewhat surprised to learn that in spite of being easier on the system overall, Taxol can have a much more dramatic effect shrinking the tumor itself. The usual exam before the first Taxol treatment showed C/A had done its job; the tumor was smaller, softer around the edges and more easily operable. So far so good here in cancerworld.

Taxol requires a bit more pre-med prep before treatment. 20mg’s of a steroid the night before, another 20mg the morning of, and some Benadryl to boot, all to prevent an allegic reaction to the treatment itself. Taxol is a slow IV drip, taking just over 3 hours to complete. We set up camp in the Oncology clinic for the day, laptops clicking away, eating meals, making calls, monitoring kids from afar. Mary Rose is given no end of good natured crap for actually working during chemo itself. Between the exam, blood work and the treatment itself it’s about a 6 hour day at the hospital. Then the real carnival begins.

Pumped full of steroids and enough other substances to make Robert Downey Jr blush, she comes out of this treatment with all guns blazing. “I feel great! I feel fantastic. I have so much to do. I want to walk the boulevard! This is great chemo! I have to get her laundry done. This is so much better than the last stuff. I want to stay up and watch 30 Rock!” and so on. The treatment was on a Thursday and this continues into Friday. I’m fairly certain she was up at 3am answering emails and eliminating items from her to-do list. One can only stay airborne for so long though, and on Saturday she comes tumbling down. The bed and the couch are visited with some frequency, the lists seem much less urgent and she is easily convinced to let husband do the cooking after all. Some equilibrium is restored by Sunday, and by Monday she is out the door and off to work like any other day. There’s an emotional element to this cycle as well, of course. The confidence of the 36 hours or so after treatment fades and some melancholy creeps in over the weekend, only to fade in turn by the start of the work week.

In addition to pharmaceutical acrobatics, she has also become something of a master of disguise. Her work wig is such a flawless match that she is often complimented on her great new hairdo, a comment which requires either an hour-long explanation or none at all. She does not look like a sick person. She does not look like a cancer patient. She looks like herself, so much so that she got carded (yet again!) not once but twice in the following week, much to my fuzzy-headed chagrin. At home however, things take a more exotic turn. She has embraced her baldness, pretty much tossing her wig aside the moment she walks in the door, and venturing out to run errands more and more with just a hat. She is very beautiful bald, and perhaps it’s just the geek in me, but I find it sexy in a sci-fi kind of way. Truth be told, I’m the freak show around here.
Me: I hate my hair and I hate my head. I look mean and old
Mary Rose: No you don’t.
Me: Oona, does Daddy’s short hair make him look mean and old? 
Oona: Well, (pause) you don’t look old.

Saturday the 21st we headed for Boston again for a happily non-medical reason, this time to give Oona a vacation week treat. We went to see the Big Apple Circus on tour. BAC is an old school circus: big top tent, one ring, none of the new age glitz of Cirque du Soleil or elephantine spectacle of Ringling Brothers, just clowns and acrobats, some trained dogs and horses, feats of balance and strength. Off to the North End for dinner after that, then back to the hotel where a certain young lady stayed up far too late and woke up far too early. Mary Rose held up beautifully through it all, unflagging in her energy and spirit, a feat of balance and strength all her own.

Thursday the 24th was her second Taxol treatment, the sixth of a total of eight chemo treatments. Another day in the chair, another dose of poison and steroids and whoosh! she is off again. I watch her arc above me, functioning with a grace and determination that still leaves me awestruck. I track her path as the first flush of medicine recedes and she starts to lose altitude. I wait here on the ground no less impressed by how, even on the down slope of the drugs, she still pins her landing.

Tumbling Dice

There’s only one really fatal disease, I’ve concluded. It’s called hypochondria. And it is deadly.
Keith Richards

We had a date last weekend. In part for her birthday, in part for why the hell not? Saw the Stones/Scorcese film Shine A Light before we went out for dinner. Went to the 3:40 showing. “Is this the future?” I wondered. Afternoon movies before an early dinner? What a drag it is getting old.

Once you get past the fact that the 60+ Mick Jagger is still remarkably energetic and looks about 30 from the neck down, the most enthralling aspect of the film is the magnificent ruin of Keith Richards. Scowling, smiling, listing, smoking, leering, grinning, almost stumbling and never missing a riff, beat or flourish. The recent concert footage is interspersed with old interviews, news reports, etc, cataloging the many misdeeds and excesses of “Keef’s” past. I’m sure were are not alone in concluding that, of all people, Keith Richards should have cancer. Hell, Keith should have breast cancer as far as I’m concerned. But he does not. On and on his glorious, decrepit carcass rocks, while my soy-eating, health-conscious, vitamin-and-anti-oxidant-savvy wife gets cancer. “Who ever told you life was fair?” my mother would always ask. For her though, it was not a rhetorical question. She wanted names and dates.

Thursday, March 27 was the last CA (Cytoxan+Adriamycin) chemo treatment; the last of the first half, the harsher stuff. The bounce back from this round took considerably longer than before. More than a week out she still wasn’t quite right; that low-grade unsettled stomach hanging on until last Sunday. Her white blood cell count dropped to 1.9 and her red count was indicative of anemia. Nothing unexpected, but a bit jarring nonetheless. So much of this comes down to a numbers game; the centimeters that define the severity of a tumor, the stages of the disease, the weeks of treatment, the various measurements of blood, the months between now and normal.

We took our little show on tour last Tuesday, down to Boston to consult with Dr Mary Jane Houlihan at Beth Israel Deaconess Medical Center. Dr Houlihan is the first cousin, once removed of my niece-by-marriage, Katie O’Brien. I figure in the Irish scheme of things that makes us identical twins, so it was good to meet a family member for the first time. Our intent was not so much to get a second opinion, but to hopefully get confirmation that Mary Rose’s treatment is on the right track; that an expert in the field in a prominent practice in Boston would be doing nothing different. We are pleased to report that was the case. Dr Houlihan and her team examined Mary Rose’s records and course of therapy, and physically examined her when we were there. The chemo is doing its job; the tumor is shrinking, the second half of the treatment is likely to shrink it even more dramatically, and it is currently operable–a significant milestone. And so we continue.

We went to the North End after our appointment. Walked around, picked up some pastries, proscuitto and other Italian goodies. Had a very substantial lunch and she was even feeling good enough to have a glass of wine. We were in no hurry to get home. It was good to just sit there for a while. We made a toast to making progress. We may not be able to make the numbers move any faster, but they are rolling in the right direction. You can’t always get what you want, but if you try sometimes, you just might find, you get what you need.

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.