PATIENTS HAVE AN IMPORTANT ROLE for Breast Cancer

PATIENTS HAVE AN IMPORTANT ROLE for Breast Cancer

Patient empowerment through education will play an increasingly
important role in improving treatment outcomes. To that end, the following
can be recommended:

• Do not hesitate to request a second opinion.

• A patient should ask her oncologist about the best route for cure. If
the oncologist were in the patient’s place, which treatment would
they choose?

• Beware of waiting for a regimen or treatment to reach statistical significance
in a clinical trial before accepting it if there is an intellectual
pathway or compelling information to move ahead.

• Do not accept truncated or overly simplified regimens that may sacrifice
therapeutic efficacy (e.g., FAC-lite).

Finally, it is important for everyone who is involved in the struggle
against breast cancer to remember that the goal of treating breast cancer
patients is cure. For the time being, all we know is that complete
remission is the doorway to cure, and a prolonged complete remission
usually is cure.

CHEMOTHERAPEUTIC PRINCIPLES THAT HAVE EMERGED for Breast Cancer

CHEMOTHERAPEUTIC PRINCIPLES THAT HAVE EMERGED for Breast Cancer

• Future trials should be designed to emphasize tumor eradication
and should not focus on questions that have already been answered.

• Multimodal regional therapy should be used as aggressively as possible.
Decreasing the tumor burden in patients with metastatic cancer
should improve chances of achieving a complete remission with
TAC induction adjuvant programs.

• If a new drug program shows superior efficacy, don’t let attachment
to a previous favorite be an obstacle to adopting it. Recall the long
delay before Adriamycin was incorporated into breast adjuvant therapy
and the continued use of inappropriate or suboptimal combinations
and schedules of Adriamycin (e.g., FAC-lite).

• The absence of measurable metastatic cancer creates a dilemma.
Probably the best solution is to frequently monitor the patient and
her tumor markers.

• Toxicity, especially irreversible damage, should be avoided if possible.
The persistence of Adriamycin cardiac toxicity represents a
major oversight on the part of medical oncology. Adriamycin
should be given only by continuous infusion over 48 96 h. This
necessitates placement of a permanent central venous catheter.

• Not all resistance that develops in some cancer clones is permanent,
as evidenced the return of Adriamycin sensitivity in some cancers
that initially became resistant to this drug.

MILESTONES IN ADJUVANT THERAPY BREAST CANCER

MILESTONES IN ADJUVANT  THERAPY BREAST CANCER

In 1950s 2000

1950s Survival rate for stage IV breast cancer patients at MDA 1944 1954: 10.9% at 60 months, 3.3% at 120 months. (Previously untreated, systemic metastatic disease.)

1957 NSABP (National Surgical Adjuvant Breast Program) formed. Howard E. Skipper and Frank M. Shabel, Jr. show breast cancer can be cured by chemotherapy.

1958 First adjuvant therapy clinical trial: Halstead radical mastectomy1perioperative ThioTEPA.

1960s Survival rate for stage IV breast cancer patients at MDA 1955 1964: 9.9% at 60 months, 4.0% at 120 months.

1965 Roar Nissen-Meyer evaluates perioperative Cytoxan adjuvant therapy.

1966 Ezra M. Greenspan at Mount Sinai reports increased response to combination chemotherapy of
advanced breast cancer.

1968 Bernard Fisher reports significant increase in 5-year survival of premenopausal patients with .4
positive nodes.

1969 Richard Cooper reports significant response in metastatic breast cancer from CMFVP. (ASCO
abstract #57).

1970s Survival rate for stage IV breast cancer patients at MDA 1965 1974: 12.8% at 60 months, 4.7% at 120 months.

1973 Gianni Bonadonna begins Milan CMF-12 adjuvant therapy trial; Blumenschein and Geoffrey
Gottlieb write FAC protocol; MDA begins metastatic breast cancer trial.

1974 Aman Buzdar begins MDA adjuvant therapy trial with FAC.

1975 L-PAM NSABP trial in premenopausal patients; Stephen E. Jones and Sydney E. Salmon report adjuvant therapy with AC; CMF36 vs. CMF312 initiated by Bonadonna.

1976 NSABP moves to combination therapy with L-PAM and 5-FU; Milan CMF trial reported as positive for premenopausal patients with one to three positive nodes; FAC adjuvant therapy reported as positive by Buzdar as both pre- and postmenopausal patients with positive nodes have increased relapse-free survival.

1977 Buzdar, Blumenschein, and Gabriel Hortobagyi are criticized at meetings for being too aggressive and for using historical controls; NSABP moves to PMF, then to PFT and the breast oncology studies surge on; Bonadonna adds Adriamycin to CMF with CMFP1AV.

1978 The East Coast, Midwest, and West Coast go with CMF; Texas and Arizona stay with
Adriamycin.

1979 By this time, Adriamycin issues are clarified with respect to: (1) dose response, (2) dose rate,
(3) timing with irradiation, (4) pathologic prognostic factors, (5) combination with hormone
therapy, and (6) superiority to CMF questions answered with therapy of metastatic disease.
Kenneth D. Swenerton’s paper on prognostic factors is a cornerstone.

1980s Survival rate for stage IV breast cancer patients at MDA 1975 1984: 16.1% at 60 months, 7.4% at 120 months.

1980 NSABP discovers Adriamycin. First consensus report: No adjuvant therapy indicated for stage I breast cancer; adjuvant therapy indicated for node positive premenopausal patients and perhaps
for postmenopausal patients, if full dose used. FAC trial not recognized despite its superiority to
CMF because its evaluation was based on historical controls.

1981 PAFT introduced for patients who had failed CMF; VATH reported by James Holland.

1982 Sewa Legha reports decreased cardiac toxicity of Adriamycin using continuous infusion schedule. Bonadonna reports significance of ER status and dose on CMF outcomes.

1983 Study of Adriamycin followed by CMF vs. CMF alternating with Adriamycin begun by Milan
group.

1985 First meta-analysis; Second Consensus Conference:
(1) established chemotherapy as standard of care for premenopausal patients with positive nodes.
(2) Adjuvant therapy not generally recommended for premenopausal patients with negative nodes.
(3) Tamoxifen recommended for postmenopausal patients with positive node and positive hormone receptor levels.
(4) Chemotherapy may be considered but cannot be recommended as standard practice for
postmenopausal patients with positive nodes and negative hormone receptor levels.
(5) Routine adjuvant therapy not recommended for postmenopausal patients with negative nodes but may be considered in high risk patients.

1986 MDA reports improved relapse-free survival of stage II patients with non-cross-resistant drug
combination consolidation therapy: MTX VLB following completion of FAC.

1987 NHDB (natural history database) and adjuvant therapy comparison study published by Jones.
Dose response relationship for Adriamycin in FAC clearly established using stage IV breast
cancer patients.

1988 CALGB 8081 puts combined CAF1tamoxifen to rest.

1990s Survival rate for stage IV breast cancer patients at MDA 1985 1994: 17.4% at 60 months, 11.2% at 120 months.

1991 Arrival of Neupogen enables more intensive chemotherapeutic regimens. CALGB 8541 raises
issues regarding significance of HER2 receptor in adjuvant therapy outcomes: (1) confirms plateau
of Adriamycin efficacy at doses of 50 60 mg/m2 in adjuvant patients, (2) suggests deintensification
is not the same as intensification, (3) raises issue of studying dose response relationships in
adjuvant patients, (4) results misinterpreted with respect to optimum number of courses for
Adriamycin adjuvant therapy.

1991 Demonstration that a chemotherapeutic program could or would not induce permanent drug
resistance allowed reuse of Adriamycin to be considered if continuous infusion was used.

1992 Second meta-analysis of clinical trials.

1993 The drought of new chemotherapeutic agents is over with the introduction of Taxol followed by
Navelbine, Taxotere, Gemzar (gemcitabine).

1995 The East Coast returns to single agent dose-dense sequential trials in the adjuvant setting without trials in stage IV breast cancer. Dose intense Adriamycin followed by Taxol followed by Cytoxan. NSABP shows no benefit from Cytoxan escalation. After the third meta-analysis, 5-FU vanishes from FAC and CAF.

1996 The efficacy of two non-cross-resistant adjuvant programs is established, but there is a continuing need for improved non-cross-resistant combinations.

1998 CALGB 9344: AC34 followed by T34 vs. AC34. At the 18-month follow-up, AC34 followed
by T34 becomes the gold standard “penicillin” for breast cancer. Herceptin becomes available for
HER21 patients.

1999 Hortobagyi asks relevant questions regarding high-dose chemotherapy for breast cancer patients. High dose with autologous bone marrow transplantation is discredited. AC34 followed by Taxol34 sputters.

2000 Buzdar’s MDA data remains reliable and becomes a standard.

2000s Survival rate for stage IV breast cancer patients at MDA 1995 2004: 36.0% at 60 months, 22.2% at 120 months.

ABBREVIATION GLOSSARY in BREAST CANCER

ABBREVIATION GLOSSARY

AC Adriamycin, cyclophosphamide (Cytoxan)

ACC Arlington Cancer Center (ACC’91 is a protocol I wrote here in 1991 for inflammatory breast cancer. In 1994, MDA started FAC-Taxol. These were the only protocols in which Adriamycin was given by continuous infusion.)

ASCO American Society of Clinical Oncology

BCG Bacille Calmette Guerin, a vaccine against tuberculosis that was used in cancer therapy as an immunostimulant.

BCIRG Breast Cancer International Research Group

CAF same as FAC (from people who wanted to do the same thing but didn’t want to appear to be agreeing with us)

CALGB Cancer and Leukemia Group B

CAT cyclophosphamide, Adriamycin, Taxol

CAVe cyclophosphamide, Adriamycin, etoposide

CDDP cisplatin

CEA carcinoembryonic antigen (a tumor biomarker)

CMF cyclophosphamide, methotrexate, 5-fluorouracil

CMFVP cyclophosphamide, methotrexate, 5-fluorouracil, vincristine, prednisone

ER estrogen receptor: positive 1, negative 2

FAC 5-FU, Adriamycin, cyclophosphamide

FAC/BCG 5-fluorouracil, Adriamycin, cyclophosphamide/BCG

FUMEP mitomycin C, cisplatin, 5-FU, etoposide (VP-16)

G-CSF Neupogen, a white blood cell stimulant

HER2 an epithelial growth hormone receptor that is the gene product of the
HER2 gene (Herceptin is a humanized monoclonal antigen that blocks
this receptor)

IBC inflammatory breast cancer

L-PAM L-phenylalanine mustard

PR progesterone receptor: positive 1, negative 2

MCCFUD methotrexate, cisplatin, 5-fluorouracil, cyclophosphamide, leucovorin (leucovorin rescues patients from methotrexate toxicity)

MDA M.D. Anderson Cancer Center in Houston, TX

MOPP Combination of Mustargen (mechlorethamine), Oncovin (vincristine), procarbazine, and prednisone used in the treatment of Hodgkin's disease.

MTX/VLB methotrexate/Velban

NCI National Cancer Institute

NED no evidence of disease

NSABP National Surgical Adjuvant Breast Program

SWOG Southwest Oncology Group

TAC Taxotere (docetaxel), Adriamycin, and cyclophosphamide

ThioTEPA an alkylating chemotherapy agent related to nitrogen mustard

My Conclusion for Breast Cancer

My Conclusion for Breast Cancer

It is possible that there is no more beautiful place in Washington during the Christmas
holidays than the White House. Each year the president and first lady open up the mansion
to thousands of visitors, including the press, to celebrate the season. In a rather
extraordinary twist of fate, exactly one year to the day after learning about my cancer while
standing on the driveway outside the press briefing room, I returned to the White House to
attend one of those parties. Since that chilly evening a year earlier, I had undergone a
mastectomy, the awfulness of chemotherapy, reconstructive surgery with more to come,
drugs as a daily part of my life, not to mention the sometimes demoralizing adjustment to
my looks. In my darkest moments I hadn’t looked too far ahead, certainly not to a year
later and a return to the White House.

Despite the fact that I was to undergo another surgery in a week, it was a delight to revel
in the joys of the season. The decorations in the White House are a sight to behold, bright
and bold, meaningful and merry. From the tree honoring military personnel in the Blue
Room to the cameos by the first dog, Bo, in every room in the house (including a Bo made
of buttons and a Bo made of garbage bags), everything was lovely. I tried to remember
everything I saw because the last time I’d been in the White House was such a blur. But
the thing I remembered most was that I was standing here, with a good prognosis in front
of me and blessed to have endured the previous year.

It is a strange thing about cancer: even after all your treatment it never quite leaves you,
at least in the metaphorical sense. I see doctors regularly. I take drugs daily and will
continue to do so for the next few years. And always in the back of my mind there’s the
nagging question: Will it come back? That, of course, is unknowable. But having endured
once, I’ll know a little of what to expect. For those of you who are enduring now, I hope
that this book will have provided some comfort and solace. Everyone’s cancer is unique,
but my hope is that this book has provided a little something for each of you.

ZZZ' Sleep in Breast Cancer Survivors

Catching some zzz’s is a cartoonish way of describing sleep. In fact, it was the only way
for a cartoonist to connote sleep (and not death) almost a century ago. Capital ZZZ’s,
maybe punctuated by an exclamation point, were supposed to replicate the gentle sound of
snoring. So simple and so effective when you see them in a cartoon panel.

Sadly, there is nothing comical or simple about your relationship with sleep when you
become a cancer patient. In fact, it seems as if there is a vast conspiracy allied against you
and your ability to sleep. Your mom always told you that you needed a “good night’s
sleep,” and there’s plenty of research to support the idea that sleep is one of the most
restorative things you can do to maintain a healthy body and mind. And admit it, sleep is
probably something you have always aspired to in the hurly-burly of your daily demands.

Ah, to sleep, perchance to dream? Actually, I’d take sleep without any dreaming. Sleep
deprivation seems to be the affliction of modern America, and it is even more common
when you enter Cancerland. The cabal lined up against your sleep is pretty formidable,
thwarting every effort you may have in mind. You enter a vicious cycle of sleep you can’t
get to heal and then your inability to sleep compounds itself, and the cycle continues.

So who exactly are these conspirators stymieing your best efforts? A veritable alphabet
soup of challengers, many of which you have met in the pages of this book.

There is A for Anxiety, your companion from the first moment you feel a lump or learn
about an irregular mammogram; C for Cancerland—a place you never, ever wanted to
visit, but now that you are there it keeps you up at night; D for the Drugs—you are taking
so many of them, and some make you tired, some make you nauseous, some make you
buzzed, and some you hope are killing the cancer; G for the Guilt you are feeling about so
many things, like What did I do wrong to deserve this?; I for Indignities, of which there are
so many once you start on this breast cancer odyssey; M for Mastectomy—it hurts so
much that it defeats sleep at every turn, including, literally, if you want to sleep on your
stomach; R for Reconstruction—so many surgeries, messing up every natural rhythm that
your body ever possessed; S for the Sex you feel bad about not having because you feel
like crap and hurt like hell; X for the eXhaustion you are feeling throughout this whole
ordeal but are too exhausted to sleep.

And of course sometimes these conspirators form a tight-knit brigade, like Anxiety fed by
Guilt, which is exacerbated by not wanting Sex. You get the picture: so many forces
marshaled against your ability to sleep.
So where are the opposing forces, ready to do battle against the formidable enemies of
sleep? Well, you’ve met some of them in the pages of this book too. D, that traitor, can be
found on both sides of the battlefield, because you can get Drugs to help you sleep. Don’t
worry about becoming addicted, get some sleep; they may not always work perfectly, but
they’re a start. P for the Pillows that can make you a little more comfortable while M for
Mastectomy is doing its darnedest to thwart you and your efforts to sleep at every turn. K
will help you sleep too—the Kindness of others will soothe the darkest moments that are
feeding your anxiety; thinking about V for Vacation can take you out of the Cancerland you
are visiting now to a place where you really want to be that will replenish and rejuvenate
you.
It is important to remember there will be replenishment and rejuvenation. But it will not
happen fast, and it will not happen the way you think it might. Dealing with breast cancer
happens not on your timetable but on the timetable of the disease. What you do have
control of is how you deal with it and how you want to cope. And getting some shut-eye,
however you can, is one of the best ways of all to cope.

ZZZ' Sleep in Breast Cancer Survivors

You in Breast Cancer survivors

You in Breast Cancer survivors

I don’t think I am a particularly selfish person. I have a husband and two children, so I
consider three other people in my life every single day. Growing up in a house with three
siblings meant that even on the days when I might have wanted things to be about me, they
weren’t. I work in a business where absolutely nothing gets done without the collaboration
of so many others. This has made me conscious of people around me and able to interact
in myriad situations with myriad individuals.

When you are diagnosed with breast cancer, however, it is all about you. This is the
most rare of situations when you have permission to be selfish and self-centered and maybe
even a bit demanding. This doesn’t mean you should turn into a bitch. It means you should
surrender to the fact that you have this terrible diagnosis and you really need to focus on
you and what you need. What you are feeling at any given moment is the most important
thing during this period. Give yourself permission to get comfortable with that.

A focus on you can take many forms. For your family, your disease and treatment
become the “thing,” the dominant force in your family’s life. For our family this meant a
calendar chockablock with appointments and tests for me, many of which my husband had
to be a part of, sometimes because I needed someone to bring me home, sometimes to be
the second set of ears, listening in on every conversation with every medical professional
(see “N Is for Notebook”). So his focus had to be on me. It meant my siblings and my
sister-in-law and my father all came from overseas just for me. Not as they had so many
times before, to see my growing children, or to take a vacation from work and see the
cherry blossoms in D.C., but to see me and help me with whatever I needed.

There were more mundane ways in which my focus on myself was felt by all. Beware
my wrath if you finished up the only ice cream flavor that I could eat. Okay, maybe I was
a bitch about that. If I didn’t want to have people drop by, I could just say no without a
sense of guilt or obligation or impropriety or anything else. If I wanted to spend the
afternoon in bed crying, well, that was okay too.

My recommendation to you is to embrace you, which is harder than it sounds. At many
points in your life, perhaps in a moment of quiet reflection, you might have admitted to
yourself that what you wanted to say was “to heck” with everyone else, here is what I
want to do. Breast cancer gives you the perfect excuse to do this, although going through
with it will make you feel terrible. Terrible because you feel that this disease is now a
burden to so many other people and you feel guilty about it (see “G Is for Guilt”). You
might feel a little timid about being demanding. Don’t. It is perfectly appropriate to have
your world turn its direction toward you. It is a useful advantage of carrying the cancer
card—use it to its utmost benefit.

Xhaustion (exhaustion) in Breast Cancer

Xhaustion (exhaustion) in Breast Cancer

We have all been tired in our lives. I have given birth to two children. I have traveled the
globe to cover stories where you land and start working immediately, time zone be damned.

I have worked without pause, forty-eight hours, seventy-two hours in a row, just going as
the adrenaline somehow keeps me pumped, and I will not be defeated by my body’s
greedy thirst for rest. I have gone on hikes with my husband that I have not wanted to do,
when I feel that one foot will not reach in front of the other and I will be stuck on a
mountaintop until an air rescue mission arrives. I am tired. Leave me alone.

When you undergo chemotherapy, the doctors will tell you about the fatigue. Or as my
oncologist put it, “You won’t be living that Washington professional working mother life for
a while; something has to give.” She means you will be exhausted. Not fatigued like a
delicate Victorian damsel. You will be exhausted in a way that you cannot think is humanly
possible. It is a strange kind of tiredness. At times your body cannot hold itself up. You are
a rag doll. Your brain says yes but your body flops rather than flipping to attention. The
poisons are coursing through your system; that wretched chemotherapy makes itself felt in
every part of your body. You can’t grip because your fingertips tingle from the drugs; your
toes tingle too. Your joints have no adhesion. Does my knee really join my calf to my
thigh? I can’t tell. I want to knit but my wrists and elbows have their own ideas.

Throughout it all my brain is completely and utterly awake. I have to take “rests” in the
afternoon because my body won’t keep up with the inside of my head. My thumbs can
occasionally work on the BlackBerry; my fingers can sometimes dial a phone.

I want to fight through the exhaustion. In those early weeks of the chemotherapy, I
would take a walk around the block, propped up by my husband or one of my daughters. It
is one of the most counterintuitive things—walk through the exhaustion, just to keep the
circulation going. I was diligent about this, but it didn’t stop the exhaustion; I guess it just
kept some tone in my body. It is an accomplishment to sit downstairs at the table for
dinner. As the body acclimates to the treatment, the fatigue takes hold. Day 4 or 5 after a
day of chemo infusion was the worst for me. The chemo, the post-chemo drugs to build up
your white blood cell count to stave off infection, the fact that eating does not feel good or
taste good—all these things conspire to drag you down, and this time your exhaustion feels
legitimate.

You are not being a wuss. You are undergoing a radical chemical assault on your body.

You have to acknowledge the exhaustion and just go with it. There will be days when you
feel great. On the days you don’t, just let it be. It is not about you, it is about the
chemicals. Of course, the more chemo you have, the worse it gets. The effects are
cumulative. And what you are not quite prepared for is that it stays with you well after your
last chemo session. How long? Six months? A year? Two? It is different for everyone.

Your exhaustion is not a reflection of you or of any weakness on your part. It is a
testament to the power of the drugs that are out there chasing every one of those bad cells
away. Unfortunately, they chase the good cells too. Cut yourself some slack and take as
much rest as you need. You deserve it.

Warrior in Breat Cancer Survicors

Warrior in Breat Cancer Survicors

I am not a warrior.
I am a journalist—my profession.
I am a wife—my status.
I am a mother—my devotion.
I am not a warrior.

However, as a breast cancer patient I am deemed to be a warrior in an army made up
entirely of conscripts. I have been pressed into battle, part of the “war against cancer.” We
patients are the frontline infantry in this fight. We (breast cancer patients) have benefited
enormously from the extraordinary effort made by millions to put breast cancer on the
map. Our insignia is the pink ribbon, and we must wear it proudly. The language evoked is
inevitably military. I will battle this disease. I will defeat it. I will kick the enemy’s ass. But
even conscripts in a regular army get some training. We, on the other hand, start our fight
the second we are diagnosed. No training sessions, no time for mental preparation. I am a
warrior now, a reluctant one, but desertion is not an option. I am now engaged in a war.

Who is going to help me with the battle plan? How will I strategize my victory? Who is
going to finance this war? Who is going to be my logistics team? I must gird myself for the
fight.

But I am not a woman warrior. I am just a woman, a woman who has been diagnosed
with a horrible disease; a woman who has gone through brutal surgery; a woman who has
had her body poisoned to “kill” the disease. Can I just be a woman who is going through
that? Can I not be a woman warrior? Please?

Vacation for Breat Cancer Survivors

Yes, I know vacation is the farthest thing from your mind. You are already visiting this
strange new place called Cancerland, a foreign destination hard to navigate, a place you are
never really going to leave. How could you possibly be thinking about a vacation? Well, I
consider a vacation an admirable goal to strive for during the worst of your treatment. I did,
and it was worth it.

When you are diagnosed with breast cancer, your doctors and larger medical team—
there are so many of them—will become among the most important people in your life.
There are so many appointments to keep; so many tests to undergo; so much pain, nausea,
and discomfort to endure. I certainly felt that I wanted to be close to my doctors at all
times, day or night. The anxiety of the what-ifs is palpable. When you are undergoing
treatment you are, well, sick. Sometimes you might get so sick that you need to go to the
hospital. I ended up in the emergency room twice while I was undergoing chemotherapy,
glad that the hospital was just a short ride away.

There are ups during each cycle of chemotherapy, when you tell yourself you are feeling
better and you can do anything. But then you remember that your immune system is
completely and utterly compromised. I once entertained the thought of attending an event
in New York during one of these upswings. I was sure I had the energy and thought that
taking the train from Washington, D.C., to New York would be less taxing than flying.

Then I started to think about the circle of germs I would encounter on that trip—touching
door handles, breathing in the same air as a train car full of people, arriving at Penn Station
and encountering the full panoply of what New York City has to offer at that particular
crossroads of humanity. (For the uninitiated, it is not the most welcoming of major city
train stations; in fact, it is old, and murky, and dirty, and thoroughly depressing.) Since I
couldn’t guarantee a Purell perimeter zone with me in it and everyone else out of it, staying
close to home seemed to make most sense for me.

So, would I ever get beyond a three-mile radius of my house? Well, it turned out that
eventually I would. What I needed was a goal. For years I had wanted to visit Istanbul. In
fact, one of my earliest thoughts upon diagnosis was I’m going to die and I’ve never been
to Istanbul. So for me, finally taking that vacation was a worthy thing to strive for. During
the real lows of my treatment, it seemed the most unattainable thing possible but also, on
some days, the only thing I might get out of bed for. Ah, the paradox of cancer treatment.

But your vacation doesn’t have to be in a destination as exotic as that. A change of
scenery is a great thing, even for a day or two, but it must be a vacation for you. I made
the mistake of making a work trip out of town too soon and ran myself ragged and had to
come home early. A few months after chemotherapy the first pleasure trip I took was to
visit friends in Massachusetts. Here are the things I remember about that trip: I was leaving
home, so I was leaving my cancer behind for a while; they were really good friends and
there were no expectations on either side, they just wanted me to get away for a break and
I wanted to be somewhere different; I was really tired; I spent a lot of the weekend on the
couch in their living room, the sea visible through the screen doors, and I let the salty
breeze drift over me; I let my friends look after me (see “K Is for Kindness”). It was fortyeight
hours of bliss (see “T Is for Therapy”).

There has been much talk of America’s inability to take a vacation. We take less time off
than any other developed nation. And we are continuously “connected” when we are
vacationing, so are we really vacationing anyway? When you are undergoing cancer
treatment, the restorative and rejuvenating powers of a vacation suddenly begin to make
real sense. Whether for a few hours, a few days, or a few weeks, when your mind and
body are ready to take that vacation—take it.

I did get to Istanbul eventually. It was everything I’d hoped it would be and more. It was
my vacation from Cancerland.

Vacation for Breast Cancer Survivors

U for Un- in Breast Cancer

Yes, I know, this is a prefix. But here’s the thing: I couldn’t decide on which un- since
there are so many! The first one is understanding. There are so many things you need to
understand when you have breast cancer. You need to understand that it is unfair and it is
uncertain and it is unpredictable and it seems unending.

It is unfair. On hearing your diagnosis, this will probably be one of your first thoughts.
You will not think about that list of possible factors for breast cancer (see “G Is for Guilt”),
you will just think about the cruel hand of fate that has dealt you this blow. The reality is, it
is unfair that you have breast cancer. There is no logic to it. In the majority of cases there
isn’t even a genetic explanation for it. It just is (see “O Is for Odds”). The cosmic answer
to “why me?” is “why not?”

Uncertainty will pursue you in Cancerland, nipping at your heels like an irritating,
yapping little dog that you actually want to kick away but can’t. Should I get a second
opinion? Should I shave off my hair? Should I have a prophylactic mastectomy? Should I
have the most aggressive treatment even if the pathologies are inconclusive? At some point
you will be uncertain about every single decision that you make.

How you are going to react to your treatment is somewhat unpredictable, at least to
begin with. If you are having surgery, it might take you longer to bounce back than your
doctor tells you. Everyone’s reaction to chemotherapy is different too. Your doctor can list
all the possible side effects that come from the chemo, and she may even sound like one of
those disclaimers they throw on the ends of commercials for drugs while she does it. Yet it
is hard to predict which ones will hit you. If you understand this seeming unpredictability,
you might find some patterns. After your first chemo session, keep notes on how you react
and when. You’re likely to see a pattern as you progress through the sessions, and
understanding that goes halfway to helping you deal with it.

Every single thing about going through breast cancer will, at some point, strike you as
unending. And indeed, when you are going through all this crap, it is unending. As I’ve
mentioned before in this book, the constant round of medical appointments seems
unending, and that’s before you’ve even started your treatment. Once you’ve gone through
surgery and chemo, you might face weeks of daily radiation—that can seem unending.

And then when you’ve gone through all your treatment, the uncertainty of whether the
cancer will come back again is unending and thus something you have to manage. All I can
tell you is that you will get to the other side. It may not seem like it when you are in the
thick of it, but it is true. Some of this crap really does come to an end.

So, what you need most in your life, at this time, is some understanding in all its
meaning. Obviously you need to understand what is happening to you, the status of your
disease, and the plan to treat it. You can also look for some understanding from those
around you as you go through your treatment. Help them understand what you are going
through and what you are feeling. This is the only way for everyone to get through it.

U for Un- in Breast Cancer 

Sex in Breast Cancer Life

Cancerland is a place where, as the late Christopher Hitchens put it, “there seems to be
almost no talk of sex.” In the case of breast cancer, he was right. Now I don’t want to get
all cancer competitive on you, but the discussion of prostate cancer is often accompanied
by concerns about its impact on a man’s sex life. With breast cancer, if there is any
discussion of sex at all, it is likely to be if you are of childbearing age, and it is more likely
to be about fertility than it is about sexuality. Your sex life doesn’t come up much.
If this is not an issue for you, I applaud you and recommend you move on to “T Is for
Therapy.”

If this is an issue for you, let’s talk about it. As you’ve gleaned from the preceding pages,
when the complete embodiment of your womanhood—your breasts—becomes diseased,
this is not an easy thing to deal with. In fact, sex is so far from your mind that you might be
asking yourself, Why is she bringing this up at all? The National Cancer Institute reports,
“About half of women who have long-term treatment for breast and reproductive organ
cancers … report long-term sexual problems.” So if you are going through any sexual
challenges during treatment, you are in good company. But every year, hundreds of
thousands of women are treated for breast cancer and come out the other side. While sex
may be on hiatus during treatment, it doesn’t have to stop forever.

Lots of things can affect your sex drive when you are diagnosed with breast cancer.
First, you’ve been diagnosed with breast cancer (see “A Is for Anxiety” )! There is nothing
that can prepare you for the number that does on you mentally. This is news that you need
time to cope with, and really, all your attention can be focused on that for as long as you
need.

Second, if you have breast surgery, you hurt. You hurt physically because some or all of
your breast or breasts have been removed. That is a whole lot of hurt (see “M Is for
Mastectomy”), not to mention bandages and drains and general yuckiness. I’ve tried to
think of any way to interpret this immediate post-surgical period as sexy, but I really can’t.
Please let me know if I am wrong. You hurt emotionally too. Not only are you in mourning
for the previously healthy you, but you are in mourning for a part of your body that may
have helped define your sexiness, appeal, attractiveness. It is really hard to get aroused
when you are in that kind of state.

Third, you might have to undergo chemotherapy and/or radiation. How do I begin to
describe the unsexiness of that? Your body is being pumped with toxic chemicals and
countless other drugs to counter the effects of the toxic chemicals. Here are some of the
side effects that were possible from the particular chemo that I was taking:

• Fluid retention with weight gain, swelling of the ankles or abdominal area
• Peripheral neuropathy (numbness in your fingers and toes)
• Nausea
• Diarrhea
• Mouth sores
• Hair loss
• Fatigue and weakness
• Infection
• Nail changes, including in extreme cases nails falling off

Nothing sexy about any of that list!
So you go through the weeks and months of surgery and recovery, followed by
chemotherapy and recovery, maybe followed by radiation and recovery. During that time
you will want to be loved and hugged and calmed and comforted, and maybe you will want
to have sex. But maybe you won’t. This is where the U Is for Understanding (see “U Is for
Un-”) comes in on the part of your partner. Your partner may not feel that you are
deformed or unsexy or unattractive. In fact your partner may be working hard to convince
you of the exact opposite, that you are as beautiful and lovely as you were when love first
struck, that a surgery like this, and the resultant nine-inch scar across your chest, and your
baldness and your bloating, changes none of that. Your partner means it. You just might
not be in a condition to hear any of it.

One of my doctors did bring it up with me actually.
DOCTOR: How is your sex life?
ME: Um, nonexistent.
DOCTOR: I know it’s hard but…
ME: It’s really hard, I feel like crap.
DOCTOR: I know, but it’s like a muscle, you have to keep using it!

There you have it, the view from a medical professional. So while not many people talk
about it, a lot of the cancer literature will deal with the question of intimacy. It’s important
enough that the National Cancer Institute lists intimacy as one of the parts of your life that
can be severely affected by a diagnosis of cancer. And that is the first step, recognizing that
your sex life, sort of like your taste buds and your energy level and your hair, is affected by
your treatment. Like all of those things, it comes back. It just comes back on its own
timetable. And I speak from experience.

Sex in Breast Cancer Life

Reconstruction in Breasts Cancer

Reconstruction in Breasts Cancer

If you have had a mastectomy, the wonders of modern technology mean that you can get
your breast rebuilt. It’s important to remember that breast reconstruction is not the same as
having a boob job. You are not someone on a bad reality TV show, looking to make up for
what Mother Nature couldn’t provide. This is not about vanity; it is something much more
profound than that. This is an attempt to make you whole, at least cosmetically. You will
actually become familiar with terms like nip, tuck, reduce, liposuction, fat graft, implant,
tattoos—all in an effort to rebuild your breast and, indirectly, you.

My advice is to look upon your plastic surgeon as an artist who works on individual
commissions, your very own Michelangelo. Every single breast he rebuilds is an original,
and he will treat yours as such. Soon enough he and everyone in his office is looking at
your breasts. He will ask you about size, shape, nipple, areola (that’s where the tattoo
comes in). He will describe how the rebuilding happens in stages.

Since it was unclear what treatment I would be going through, my doctors and I made
the decision not to reconstruct at the time of the mastectomy but to get a temporary implant
instead. It would be filled with saline solution, a little more each week to allow the skin to
stretch to somewhere near the size of the new breast. Spoiler alert. The temporary implant
feels awful. It rides high in the chest and is kind of hard. One friend described it as “like
having a Fisher-Price toy stuck in your chest.” That pretty much says it. The good news is
it is temporary.

As you think about reconstruction, your breasts will become the center of everything,
regardless of whether you gave them any thought before (see “B Is for Breasts”). They will
be touched by many people in the medical profession, and you will start to touch your
breasts more yourself. You will eventually look in the mirror more. Doctors will stare
intently and assess your torso like a blank canvas, artists or sculptors eyeing everything
before making the first stroke.

After your treatment (chemo or radiation, or both) is done, it’s time to get the permanent
implant, and the doctor takes to his canvas. He is creating a work of art he knows cannot
be completed in one sitting. You will discuss the size of the permanent implant and how the
contours of your new breast will fall. This may require several surgeries, and you prepare
yourself for that. Every time he operates on you, he proceeds like a fine architect or
builder. His drawings are done with the aid of nothing more complicated than a Sharpie and
experience, and your chest is where he will demonstrate his skills as an artist. He will mark
up what needs to happen on your chest—no measuring tapes or spirit levels, just his expert
eye. And when he takes the knife to you, it should be right the first time. A few months
after the implant he builds a nipple from your skin. After that he’ll tattoo an areola.

He knows he cannot replicate exactly what you had, but the effort to eradicate the visual
reminder of what has happened to you is quite extraordinary. You have lost your breast, of
course. There is no feeling. There will be no feeding. Other doctors will marvel at the good
work he has performed—clean incisions, tight stitching, fast healing. Every day you look in
the mirror, as the scarring begins to fade, it is not a deformity that faces you but a
remarkable work of art.

Quitting in Breast Cancer

Quitting in Breast Cancer

“I give up.”

How many times have I said that to myself or thought that during this long, arduous
thing called “breast cancer”? If I had actually tried to keep count, I’m sure I would have
lost track.

Quitting comes up a lot. I don’t mean in a melodramatic way of leave me alone here to
die. I just mean in the getting up every day and putting one foot in front of the other as you
deal with the enormity of your news and the incredible busyness of managing your disease
and treatment and then actually going through the treatment. Oh, yeah, and the rest of your
life continues without interruption (see “E Is for Epiphany”).

In the early part of the process, the sheer number of appointments will give you pause.

You need to be checked out for all your doctors—the breast surgeon, the oncologist, the
plastic surgeon. It is a lot to keep track of, especially if you are one of those people who
has been pretty healthy and only saw the doctor once a year.

“We need to draw blood for X.”
“You need an MRI.”
“We need to draw blood for Y.”
“You need another biopsy, there’s another mass.”
“We need to draw blood for Z.”
“You need to go to nuclear medicine for your MUGA scan; we want to know if your
heart can stand chemo.”

“Oh, yeah, we need to draw blood for X, Y, and Z.”

On and on it goes, and your thoughts range from You people need to quit poking me
with needles to Yes, I do mind if a medical student practices drawing blood from me.

That whole keep-moving-through-your-tiredness thing (see “X Is for eXhaustion”) is
another point where quitting seems to be the most attractive option.

YOU: I can’t walk further than this block.
VOICE IN YOUR HEAD: You have to keep moving, just another block.
YOU: Okay, I made it to the end of this block. I need to quit now.
VOICE IN YOUR HEAD: Will yourself through the tiredness.
YOU: But doesn’t turning around and walking the same distance back count?

I will confess, that whole keep-moving thing was incredibly hard for me. The days I did
it I felt a tremendous sense of achievement; the days I didn’t I tried to cut myself some
slack.

If you lose weight during chemo, my theory is that it’s not necessarily because you are
throwing up. The advancement in antinausea medicine is truly extraordinary, and while I
felt plenty nauseous, I didn’t throw up once during chemo. I think the real culprit is your
taste buds, which have been blown to smithereens by the poison. “You need to proteinload,”
the nutritionist told me. That’s all well and good, but taste, texture, smell, everything
is out of whack. I took to eating with plastic utensils because everything tasted like the
metal of the silverware. The texture of yogurt did make me feel like I wanted to barf.

Almost everything I ate left a salty taste in my mouth, including mint–chocolate chip ice
cream! And the things I usually enjoyed, like the smell of broccoli stir-fried in garlic? No
thank you. And the thing I love most, a nice cup of tea, was completely off the menu. I
didn’t drink tea during my treatment at all, and prior to that you could have described me
as an addict. My day could not get going without a cup of tea. Really, why even bother? I
should just quit eating and drinking.

Is there ever an acceptable moment to succumb to the desire to quit? Well, if you believe
the combative rhetoric surrounding the breast cancer movement (see “W Is for Warrior” ),
then I guess the answer would be no. In a real-world example of cognitive dissonance, that
combative rhetoric is often coupled with a gossamer pink lens through which the soldier
looks at her adversary. From this vantage point, attitude is all. As if somehow your bad
attitude gave you breast cancer, now a good attitude will cure it. By this logic, your attitude
should be Don’t quit, keep fighting, keep pushing, and you can beat this thing.

Well, sorry to be contrary, but yes, there are times when it is okay to quit. Maybe for an
hour, maybe for the day. The whole doctor appointment and testing regimen thing—can’t
really quit that. Other things, though, hell yeah, you can give yourself permission to say no.
There will be days when you will not be able to walk through that eXhaustion. That’s
okay. It won’t be forever, and maybe taking a break will make you feel well enough to
walk a bit further the next day.

Well-meaning family and friends will be plying you with “good, healthy food” that will
actually make you want to puke. Just politely tell them you are quitting eating that for now
and find what works for you and eat it to your heart’s content. For me, it was peanut
butter, crackers, and Gatorade. It’s funny, it’s a little like pregnancy; weird chemical
distortions are happening to your body, and you think you will change forever. However,
like pregnancy, this, too, shall pass.

And the odd day when you want to quit the world completely—no contact with anyone,
getting lost in a chick flick or a book or just your own company—that is the most satisfying
quitting of all.

Pillows in Breast Cancer

Pillows in Breast Cancer

Pillows are decidedly decadent. Nothing evokes sybaritic pleasures like the sight of a luxury
hotel advertising its dreamy beds with a fluffy cloud of pillows. A pile of soft marshmallows
that you just want to dive into and that can’t possibly be good for you, can it?

Pillows date back to ancient Egypt. They’ve been found in tombs buried with the dead.

They were decorative works of art. In ancient China they were made of hard materials like
porcelain, jade, and wood, each a solid block with a half-moon cut out at the top where
you could rest your neck but keep your head off the floor. Their usage has spread over the
millennia, though in Tudor England they were thought to be good only for weak men and
women bearing children. I’ve had lots of fights about pillows with my husband—how many
do we really need on the bed if we can’t use them all? What’s a decorative pillow? Do you
really need a pillow when we go camping? What’s wrong with stuffing your clothes in a
stuff sack and using that as a pillow?

Well, who knew that my cancer treatment would allow me to enter guilt-free pillow
indulgence? In fact, therapeutic pillow indulgence was exactly what I needed and I didn’t
even know it.

Breast removal is a brutal assault on your body (see “M Is for Mastectomy”). I imagined
it would hurt, but it really hurts. Try this exercise. Raise your arm to your mouth, fingers
clenched like you are holding a toothbrush. That uses pectoral muscles. Hold down a loaf
of bread with one hand and try to grip a knife and slice the bread with the other. Same
muscles. Lie flat, then try to raise yourself without using your arms (I’m assuming you
don’t have abs of steel; I don’t). Raise your arms and pull on a T-shirt, or take off a T-shirt
for that matter. This is the moment you discover how important those muscles across your
chest are, and as one of my doctors said, they “really do a number on those muscles” when
they remove the breast.

In the post-surgical haze of my recovery room, the first thing I was conscious of was the
fact that I felt so flattened you could probably have peeled me off the stretcher. Like
something out of a Looney Tunes cartoon or the children’s book character Flat Stanley,
whom you could put in an envelope and mail to someone. That figure of speech “being run
over by a bus” had real meaning for me now.

They did manage to peel me off the stretcher and transfer me to a hospital bed. But
those beds have buttons that allow you to recline or elevate. I realized pretty quickly that I
would need to be elevated all the time. Those pectoral muscles could not take lying flat.

Sadly, with no such contraption at home, this angle was not going to be easy to replicate.
But lo and behold, an amazing delivery. My friend Jennifer, herself a double-mastectomy
patient, delivered a giant foam wedge pillow. If you’ve seen fans of the Green Bay Packers
with their famous Cheesehead headgear, you’ll know what I mean when I say it is shaped
like a giant wedge of cheese. So when we came home, I was able to lie in bed with my
torso elevated at just the right angle. Really, in a million years I never would have known
this. It has been a lifesaver, the anchor pillow in a group of pillows that contributed to my
comfort during the worst periods after surgery and during recovery.

Another useful little pillow came courtesy of the American Cancer Society. A delivery
from them included an enormous amount of literature and this three-by-six-inch pillow.

What was I supposed to do with this? It might work for a big doll, but really? Well, turns
out it fit pretty snugly in my armpit, where the surgeons had been ferreting around checking
out my lymph nodes, and the pillow really eased the pain. The soft pillow my daughter
made as part of a sewing project? Very handy to place under my side where I no longer
had a breast but had plenty of pain and tenderness. Firm pillows, soft pillows, large pillows,
small pillows, wedge, circle, square. The architecture of my pillow arrangement was a vital
part of my treatment and recovery. I spent an inordinate amount of time in bed during my
period of surgery and treatment, and I would have been lost without my pillows. In a time
of enormous discomfort, pillows are an indulgence that you can afford, and they actually
make a huge difference. Who knew?

Odds in Breast Cancer

Odds in Breast Cancer

If I told you that you had a one-in-eight chance of winning the lottery, you’d probably run
out and buy a ticket right now. Those are extremely good odds. Odds worth acting upon
for, say, betting on the Triple Crown, or the World Series or the lottery! So it is sobering to
think that the odds are very good that if you are a woman in the United States of America
you will get breast cancer. In fact the odds are one in eight that you will get breast cancer.

Once you are diagnosed with breast cancer, you suddenly realize that you could get
really interested in statistics like that or, as my friend Linda calls it, “medical math.” The
two most common risk factors for breast cancer are being female and getting older. So
once you are one of those one in eight, you become really interested in trying to understand
odds a little better. Because actually every decision you make once you are diagnosed is
predicated upon understanding the odds and acting upon that understanding. Understanding
the odds of attacking the cancer if you have a lumpectomy versus a mastectomy.

Understanding the odds of recurrence if you have chemotherapy followed by oral drugs
after your mastectomy or if you just have the mastectomy and nothing else. Once you start
the drugs and you start feeling the side effects, you begin thinking about what your odds
would be like if you stopped taking the drugs so you could get some relief from the side
effects. You are always thinking about the odds of the breast cancer coming back in five
years or ten years or fifteen years. Wow, that’s a lot of math to think about.

I have broken my own rule on trolling the Internet just to look at this question of odds.
The National Cancer Institute has a handy little calculator called a Breast Cancer Risk
Assessment Tool. According to that, my odds of getting breast cancer were 0.8 percent.

Well, that didn’t work out so well. I guess someone has to be in that 0.8 percent. Eightyfive
percent of breast cancers occur where there is no family history—okay, I think that
stat makes me feel a little better (see “G Is for Guilt”).

Once I was diagnosed, what other fascinating things could I glean from statistics?

There’s a chart for everything. A chart for survival rates—five, ten, and fifteen years—
based on the stage of your cancer. You can look up survival rates based on age. You can
examine your odds for survival depending on your race. The course of treatment to follow
is also dictated by odds. A pathology of your tumor can help assess the risk of recurrence
based on the treatment options and that pathology. What combination of treatments
reduces the chance of recurrence the most? The kind of test I took, the Oncotype DX test,
was supposed to help evaluate the chances of recurrence for me and my particular tumor
on a spectrum of risk from low to high. The course of treatment was obvious if you were
low risk or high risk. I, of course, was intermediate so had to figure out what treatment I
felt I should have, since the math wasn’t conclusive. I guess in that sense I’m a pretty runof-
the-mill breast cancer patient. I was never really good at this kind of math, and it can get
overwhelming.

However, the dirty little secret about breast cancer is that it is all about odds. It irks me
when people ask if I am “all clear” or if I am in “remission” or if I am “cured.” These are
words I have never heard uttered by my doctors. Not ever. Once a diagnosis is made, the
doctors remove the cancer they have found, including, they hope, any microscopic cells
that may be running around your body looking for another place to lodge. Then they work
on trying to lower the odds of its coming back. Let’s remember, there is no cure for cancer,
yet. This is also why I have a problem with the word survivor. I have survived, for now.

As the years progress, I am going to be checking the math I was so engaged in at the
beginning to see how I match up. Odds that I’ll be around to do that five years after being
diagnosed? Eighty-eight percent.

Notebook in Breast Cancer

The day you are diagnosed with breast cancer is a day you will never forget. It is the
moment that your world is turned upside down forever. Nothing about you or your life will
be the same after that. It is such a defining moment, the moment when you enter
Cancerland, you think it is something that you will remember forever. You will now hang
on every word uttered to you by every medical professional you will meet. This is a big
thing—how can you forget it? Everything about this experience will be etched in your
memory forever, maybe even verbatim.

Well, the truth of the matter is, not every word you hear will be carved in stone on
tablets that you can pull from the recesses of your memory at will. You will probably
remember the diagnosis, I’ll give you that. Everything else? That’s a little tougher.

As a journalist, I try to bring my inquisitive, analytical outlook to everything I do. I
started to take notes from the moment of diagnosis, but it soon became clear that this
would not be an easy task for me. There I sat, in the sterile glare of overhead fluorescents,
a poster above my head showing a cross-section of the breast and how a ductal carcinoma
in situ becomes invasive. My professor husband sat next to me (also taking notes). I
followed along diligently, and then it happened. A tidal wave of fear and shock washed
over me. It was the moment I realized, Oh, she’s talking about me. I lost focus and passed
the notebook to my husband. He continued to scribble in my book as I tried to wrap my
head around what the doctor was saying.

It is really important to keep notes, and not just notes from the meetings with the
doctors. You will see many doctors. You will have many tests. You will be bombarded
with information. You will have more appointments than you can possibly comprehend.

You will become acquainted with many wonderful physician’s assistants and administrative
assistants and nurses and volunteers, and you will want to remember them. You may want
to write down an observation or two about something you encounter in this strange country
where you have found yourself—Cancerland. You will have lots of phone numbers and email
addresses and dates to keep track of. I have all the latest technological gizmos, and
some were quite useful to me during my treatment. However, nothing has been as
comforting as a good old-fashioned notebook. I don’t mean a journal where you pour out
your most inner thoughts. I mean a notebook. A place you can just jot.

Mine was a Jane Austen notebook. In fact, I had used it to plan a trip to Bath, England,
with my family, to pay homage to one of my favorite authors, so I have train times and a
hotel reservation noted in it. My daughter has written down something of an itinerary
—Pump Room? Fashion Museum?—and of course www.janeausten.co.uk. That took up
just the first couple of pages. The rest was blank. So rather than buy a new book, I made
this my cancer notebook. I happen to find solace in Jane Austen, so a lined notebook with
pithy quotes from her was something that provided great comfort to me.

Friendship is certainly the finest balm for the pangs of disappointed love.
—NORT HANGER ABBEY

Well, it also happens to be the finest balm when you are going through a wretched
disease, as I discovered. You should choose whatever works for you, but get something
that you can easily carry with you everywhere. The thing about a notebook is that it is
portable, can be beautiful, and doesn’t need a Wi-Fi signal. There were moments I could
have whipped out an iPad to take notes, but somehow that would have seemed a lot more
obtrusive.

It is also important to realize that you will probably need a stenographer with you,
particularly for the doctor appointments. As I skim through my notebook now, I see lots of
my husband’s spidery scrawl across the pages; clearly I was not very good at multitasking
in this instance—listening and writing at the same time when my health was the topic of
conversation! Almost all of the notes from doctor appointments are in my husband’s hand.

Phone numbers, observations, appointments are in mine. We would also write down a list
of questions before an appointment so we knew exactly what to ask when we got there.
Glancing back now, I see questions like Genetic testing? Prophylactic mastectomy on the
other breast? There are the notes from various appointments like this one post-op on the
final pathology report: “found a 3rd .3cm invasive tumor … mastectomy was right call.”

There is a double-page chart sketched out by my husband on which he tried to lay out the
various possible outcomes of a test I was about to have that would determine whether or
not I would have chemotherapy.

It may seem strange to say, but this notebook has become a sort of talisman for me. As I
have moved further away from the original drama of diagnosis and the seemingly endless
visits to the hospital for treatment, I have noticed how my notebook reflects the different
stages I endured. It charts progress from diagnosis to treatment, to post-treatment. It
reminds me of the people I met along the way who made things a little easier, like Mary
Redding, the amazing volunteer at the chemo infusion unit, and Shawnette Morton, the
gatekeeper to my plastic surgeon who managed to schedule every appointment to fit my life
as well as his! As I turn the pages and see them less and less densely packed with my
husband’s scrawl and more and more entries in my hand, it reminds me that I have come a
long way. Who knew a notebook could do that?

Notebook in Breast Cancer

Mastectomy in Breast Cancer

Mastectomy in Breast Cancer

For many women a diagnosis of breast cancer will lead to a mastectomy, sometimes single,
sometimes double. Whichever it is, it is an extreme step but, for many, a lifesaver.
The word sounds benign and almost refined, mas·tec·to·my [ma-stek-tuh-mee], noun,
plural -mies. Surgery. The operation of removing the breast or mamma.

It’s a word that is certainly polite enough for company, the subject of open discussion
among friends, acquaintances, colleagues with whom you might never have discussed your
breasts before (see “B Is for Breasts”). However, if I were to describe this procedure as an
amputation of the breast, it would probably make most people recoil. Having been through
one myself now, this is how I describe it. Something that was there is now gone, something
that protruded from my body is now “lopped” off. The words amputate or amputation
never came up when I was diagnosed with breast cancer. They still don’t. The first term
used was partial mastectomy, commonly known as lumpectomy. But soon it was clear that
there was more than one tumor and the only course of action was a mastectomy.

Mastectomy is a word that tens of thousands of women hear every year, and it is a
course of action they take. It is a brutal, violent thing to have happen to you, and it is
perfectly fine to feel that it is an amputation, and don’t let anyone tell you otherwise. For
me it was easier to cope with by thinking of it in that way. On those truly dark days when
you are in real pain, and you look down and the familiar landscape of your body is no
longer there, it is a humbling and mournful experience. In my case, one side had been
obliterated, in a process akin to mountaintop-removal mining, and there was a flat, stark,
scarred space where once had resided a soft, protruding manifestation of my femininity and
sexuality. At that moment, amputation seems a more accurate description of the procedure
than anything else.

At first blush you don’t give much thought to what a mastectomy means. Mastectomy is
a medical term you’ve heard a hundred times before. In that meeting with the breast
surgeon, the overwhelming thought is that there are cancer cells running rampant in your
breast and the only course of action is to remove the offending appendage before those
little buggers get comfortable and spread throughout your body and claim squatters’ rights.

Once they make themselves at home, it is always hard to throw squatters out! Get them out
of me by any means necessary. It is a visceral reaction. My house has been invaded.

Hurry, do it right away. Can we book the operating room soon? How about now? Well, it
turned out that we could, relatively quickly, send in the cavalry to throw those invaders out.

Ten days after being told that a mastectomy was my only option, I was under the knife,
and a few hours later I was down a breast.

I must confess, I’ve never been much of a boob person. I’ve always dressed modestly
and don’t like to show any cleavage. Spaghetti straps were not an option in my wardrobe,
let alone strapless. As I got older, I had even less desire to showcase my boobs. Gravity
and motherhood certainly took their toll. What miracle of engineering would hold up my
breasts without some extravagant superstructure? I wasn’t huge, just average, 36C, but
always conscious of my not very perky breasts.

So I didn’t love my breasts, but they were mine. I wouldn’t say I was particularly
attached to them or proud of them, but nothing quite prepared me for how awful I would
feel when I lost one. There is the physical awfulness, the flattening of your whole body
(see “P Is for Pillows”). There is also the bruising and the drains from the wound.

Immediately after the surgery you are bound up like an Egyptian mummy, a surgical bra
holding you together as drains protrude out of the sides and gunk collects in little containers
that you empty every day. You can barely raise your arm, and you need assistance to lift
yourself up in bed.

But there is something altogether more dispiriting. This is the worst physical
manifestation of the disease. It is there every day to remind you what you have been
through. I will admit that I could not look at my naked self in the mirror for months after
my mastectomy. I knew I would be having reconstruction, but that was going to be after I
was somewhat recovered from my chemo so that I would be strong enough to go through
reconstructive surgery. I knew I was misshapen. I knew I had a long horizontal scar across
my chest where I used to have a breast. I knew that I would get a new breast, that the
doctor would rebuild a nipple and tattoo the areola. I had seen pictures of his previous
surgeries. It was actually kind of amazing to see what he could do (see “R Is for
Reconstruction”). But I couldn’t look at myself. You are covered up, of course; nobody
can really tell unless they see you naked. The only people who saw my naked chest were
my husband and my doctors. I turned my back to the mirror every time I got out of the
shower. In hotels that had walls of mirrors, I never looked up until I had covered myself
with a towel.

This may seem like crazy, irrational behavior. In my mind it is the most normal reaction
to such a brutal act.

Of course, we are incredibly blessed that in the twenty-first century we are armed with
the tools not just to diagnose and remove the cancerous breast but also to reconstruct a
breast. For much of the twentieth century the only treatment for breast cancer was what
they called a “radical” mastectomy, which also removed the muscles attached to the chest
wall. It was a painful and disfiguring treatment. Those were the days before they
approached breast cancer as a holistic disease that requires drug treatment as well as
surgery. Nowadays, except in the most extreme cases, the muscles are kept in place and it
is possible to rebuild your pectoral strength. And of course, you can get a new breast. As
my brother reminded me, “You live in America; they have the power to rebuild you.”

True, but that’s a long haul. As you wait to get the perfect boobs, you are allowed to
mourn for the lost boobs. A part of your body that defines you as a woman, and maybe a
mother, has been removed because it is now host to a disease that could kill you. I can’t
help but feel that if we called it “an amputation” the rest of the world would get that too.

Looks in Breast Cancer

Looks in Breast Cancer

Yes, at this point you might be thinking that some of the topics addressed in this book ( “F
Is for Fashion Accessories” and “H Is for Hair”) are superficial and would be at the bottom
of your list of concerns when facing a biggie like breast cancer. Well, there are many
surprises that come with a diagnosis of breast cancer, and thinking about your looks turns
out to be one of them.

We will stipulate for the record that you are careful about your looks, but not overly
concerned. You care in the I’m-a-woman-who-comports-herself-acceptably-to-societalexpectations-
and-am-thoroughly-presentable kind of way, not in the I- spend-two-hoursevery-
morning-primping-and-painting-myself-and-will-not-let-a-soul-see-me-withoutmakeup-
on kind of way. But the thing about breast cancer treatment is that it does things to
your looks, and not necessarily good things. So, whichever category you fall into—plain or
primped—you find yourself thinking: Why am I so worried about my looks right now? I’m
going through breast cancer for goodness’ sake. Well, because you are a woman, and it
matters more for women. There, I said it. I will spare me my own righteous indignation
(and yours) at this point and just accept that this is true (see “H Is for Hair” again).

I am not talking about buying into the whole “crazy sexy” cancer thing here, which is not
where my head was, and frankly you can get through cancer without embracing that
extreme. As my friend the humorist and fellow cancer traveler, the late David Rakoff, told
t h e New York Times, “It seems like the oncological chapter of the covert war on
women … often preached by women against women, which is often just a variant on the
pressure on women to not get epidurals during pregnancy and die in labor like in the
Victorian age. It sounds like, ‘You should go to chemo in sky-high Jimmy Choos!’ And if
you don’t you’re a lazy bitch who deserves to die of cancer.”

So no, I didn’t go to chemo wearing Jimmy Choos and lipstick. However, I found myself
introduced to a program called Look Good Feel Better, a collaboration between the
American Cancer Society and the cosmetics industry that provides skin care, makeup, and
grooming counseling (including wig wearing and tying a head scarf) to women who are
going through cancer treatment. At your first session, during which professionals teach you
how to make yourself up, you are handed a big free bag of makeup that suits your skin
tone, no doubt to help you look good and thus feel better.

I’m actually someone who has never worn much makeup. So I’m not one of those
people who ascribes her cancer to carcinogen-laced makeup. The last time I wore mascara
was probably at my wedding. But I have to say I learned a lot of useful things. Things like
the importance of applying sunscreen on my bald head—obvious, you say, but no, not
really, if you’ve never been bald. I learned that my nails, like so much else, would suffer.
In fact, they turned a blackish purple color, which was quite disturbing. I learned to apply
moisturizer with upward strokes and to contour my cheekbones with a powder blush. In all,
I was taught twelve steps to make myself up completely. I never did all twelve, maybe
eight or nine on some days.

Why was I doing this at all? I’ll tell you why. I looked awful during my treatment.
Really, it was not a pretty sight. My face bloated like a balloon from the steroids, the
chemotherapy made my skin blotchy, I was so sallow there was a ghostly pall about me.
And, of course, I was bald. To be completely frank, I felt like crap.

But did I need to look like crap? Like I said, I was going through breast cancer
treatment, so it would have been fine to leave well enough alone. Believe me, most days,
when just getting out of bed was an achievement, that is exactly what I did. But there were
other days when I did something about it. The days I went into work I put aside an extra
twenty to thirty minutes to apply my makeup and fit my wig or head covering just right. It
was almost like applying a shield, not letting the wider world know just exactly how sick I
was or how badly I was handling the treatment. Not because I was ashamed of it, but
because, you know, everybody doesn’t need to know all my business all the time. Going
through something like cancer treatment is hard, and it shows. Providing myself with a
mask (literally) protected me from the awkward gazes of the people around me who
couldn’t help but notice how awful I looked on the days I didn’t don that mask. It probably
helped them handle my disease better too. That may seem an odd thing to be concerned
about, but I was concerned about it because I didn’t want my handling of the disease to be
an awkward thing for anybody.

I have had male friends and colleagues who have gone through cancer treatment, and I
can assuredly say that everything I’ve just discussed was not in the slightest bit relevant to
them. I have tried to instill in my two teenage daughters the sense that looks aren’t
everything and form just a small and irrelevant part of who a person is. So how hypocritical
was I, being so concerned about my looks? Like I said, I could not have put on the “face”
every single day, or even have put on the full face ever. But there were days when donning
the mask really helped. That’s not self-centered or vain or egotistical, that’s just what
worked for me. If it works for you, great, because you and no one but you gets to decide
how you look.

Kindness in Breast Cancer

Kindness in Breast Cancer

When you break the news to your friends that you have been diagnosed with cancer, the
first thing they will do, after their initial shock and concern, is offer to do something for
you. You should think about this. Not too long. Not too hard. Just long enough and hard
enough to figure out what you need done and then let them do it.

If you are anything like me, you will think that you can handle this, that the systems you
have set in place will work just fine and people shouldn’t trouble themselves for you. Type
A personalities, in particular, take note: you should disabuse yourself of this notion as soon
as possible. People really want to help, so make them feel good by letting them and you
will feel good too.

You will receive extraordinary acts of kindness and love from people all around you,
people in parts of your life whom you might not have given much thought to beyond a
perfunctory nod or hello in the morning. You learn to accept this kindness because you like
to think that you will be as helpful to them or others should they be in the same
predicament. What’s more, you actually really need the help, even though you may not
know that to begin with.

Sara was one of the kind angels who surrounded me. Using her well-honed instincts as a
television producer, she got word out via e-mail to a large list of friends about my diagnosis
and treatment. She also used her skills to organize our meals with an online calendar,
outlining details of how many to feed and our dietary restrictions. She provided precise
delivery instructions and even put a cooler on the porch so we didn’t have to answer the
door if we weren’t in the mood! For five months our family of four was fed by Sara and
her battalion of angels, friends, and colleagues from so many spheres of my life.

This single act probably contributed most to preventing the strain that could have
disintegrated our family as we dealt with my medical challenge. Our friends all cooked
wonderful, healthy, and appetizing meals, and there was one gesture in particular that spoke
volumes. Everyone who made a salad made their own dressing! Even after all this time has
passed, it is something that strikes me as extraordinary. This seemingly small act spoke
volumes about how kind people are and how much thought they put into helping at a time
of need.

There is the kind angel who drives you places if your husband can’t be two places at
once; the immensely kind angel nurses who stay sunny and upbeat as you are going
through the most awful thing in your life; the amazing volunteers at the chemotherapy
infusion center—they are very special angels of kindness; the wonderfully kind and loving
administrative staff at all my doctors’ offices, the frontline troops in your medical mission,
handling the vital task of logistics; the parking attendant at the office who parked my car
and helped me carry things on the days I did go to work and who made me feel okay about
my baldness because under his hat he was bald too. He is an angel, and his name really is
Ammanuel. Your friend who had also gone through breast cancer and delivers a wedge
pillow that is indispensable (see “P Is for Pillows”); the amazing mothers who take your
kids off your hands when you’re in need of a break; your self-centered teenage daughters
who have enough awareness to know that no matter how much you don’t want to, Mom
really needs you to hold her hand as she takes a walk around the block just to keep her
systems running and alert. Kindness abounds in ways big and small in your life. Embrace it.