Navigating the Caregiver Terrain
What I wish our
doctors had told me when my wife had breast cancer.
By Marc Silver
I remember how lost and lonely I felt when my wife was
diagnosed with breast cancer. I didn’t know what to do. I
didn’t know what to expect. And I didn’t want to burden
Marsha by telling her how frightened I was. So the two of us would
go from doctor’s office to doctor’s office, where we’d
sit, side by side, overwhelmed by the emotions welling up inside
and by the barrage of strange new words falling from the doctor’s
lips. Looking back, I wish just one of those docs had taken me aside
and given me the following advice.
If you feel as if you’ve been hit by a truck, that’s
perfectly normal. That’s because cancer is still
one of the most frightening words in the medical dictionary. And
there might be more bad news ahead as doctors investigate the life-threatening
disease that afflicts your wife’s breast. Marc Heyison, who
co-founded the educational group Men Against Breast Cancer after
his mother’s diagnosis, is not a medical professional, but
he knows how to inspire a downtrodden breast cancer husband, quoting
the immortal words of the late Vince Lombardi: “It’s
not whether you get knocked down, it’s whether you get up.”
Feeling scared? That’s normal, too. You might
want to share your feelings with your wife (although be sure to
add, “But I’ll always be there for you”). Or you
might decide to keep your feelings from her because she needs to
take care of herself instead of worrying that her poor, dear husband
is going to melt down. Whether you disclose or conceal, take heart,
because …
In some ways, the first month is the worst. Breast
cancer has rocked the foundation of your world. In a matter of weeks,
your wife must assemble a team of doctors she likes and settle on
a treatment plan that makes sense to her. Once she’s reached
that point, some of the free-floating anxiety you both feel will
lessen—only to be replaced by new anxieties, like, “What’s
chemo like?” But I’ll get to that a bit later.
Will there be stress on your marriage? You betcha.
A cancer diagnosis can tip a marriage over—even a marriage
that seemed fine beforehand. There will certainly be times when
you and your wife are out of synch—just as you sometimes were
before cancer. But plenty of couples fight the disease hand in hand;
some grow closer after their months on the battlefield. And the
best way to remain close is to keep talking and to heed the breast
cancer husband’s motto: “Shut up and listen.”
Two words: breast specialists. A generalist may
be perfectly capable of caring for your wife, but a specialist offers
the knowledge gained from experience and from following the latest
research. In my wife’s case, a general surgeon recommended
a mastectomy. Because the tumor was near the nipple, he felt a lumpectomy
would disfigure the breast. We went to a breast specialist for a
second opinion. She was confident that a lumpectomy would leave
just a small dent. How do you find out how often a doctor treats
breast cancer patients? Just ask. And the answer doesn’t have
to be all the time. Even 50 percent of a practice devoted to breast
cancer means a significant amount of time spent treating the disease.
Don’t ask what the doctor would do if the patient
were his wife. A well-meaning male oncologist used the
“my wife” construct when he met with Marsha and me.
“If this were my wife,” he said, “I’d recommend
chemotherapy.” The problem is that his wife is not my wife.
A breast cancer patient must make many choices, and there isn’t
always a one-cure-fits-all treatment. The doctor has to present
a treatment plan that makes sense for your wife, and she has to
agree with his recommendation. Oh, and one more thing to remember
about the “if it were my wife” line: Even doctors admit
they are notoriously bad at taking care of their family’s
health.
Doctors aren’t mind readers. Here’s
what a very genial surgeon told my wife: “I can tell you’ll
always worry about recurrence, so I’d recommend a bilateral
mastectomy.” What’s wrong with that statement? He’d
just met Marsha minutes before, at a time when she was coping with
news of a cancerous tumor in each breast. How dare he presume to
know what she was thinking! If a doctor makes this sort of remark,
the husband is the one who can later ask his wife: “Is that
really how you feel?”
A mastectomy is not a guarantee of a cancer-free future.
Even after a mastectomy, a breast cancer patient runs a small risk
of recurrence along the skin or the chest wall, typically in the
5 to 10 percent range—about the same risk of recurrence after
a lumpectomy and radiation. The risk of recurrence for mastectomy
patients is even higher if the tumor is 5 centimeters or larger,
or has spread to four or more lymph nodes, or if the patient has
inflammatory breast cancer, an especially aggressive variety.
Don’t be a take-charge guy. You’re
not the boss of her. It’s not your job to run her medical
treatment. You’re the caregiver, the support guy, the sounding
board. She may ask you what you think, and you can tell her, but
she’s the one who will decide what to do about her breast
cancer.
Your ears are better than her ears. In the doctor’s
office, a breast cancer patient is likely to forget a significant
portion of what the doctor tells her. She may misremember information
or focus on the negative. By listening carefully and either taking
notes or, with the doctor’s OK, recording the session, you
can help your wife regain the information she lost due to her cancer-induced
state of stress.
Ask for directions. That’s not something
guys like to do. But face it: You’ve most likely never been
a caregiver before. So tell your wife that you’d like to do
anything that will make her life easier—trying your luck with
the laundry; renting a movie she’s always wanted to see, even
if it’s a chick flick, and watching it with her; ordering
her favorite take-out meal. But whatever you do, don’t rearrange
the kitchen.
Buy a binder and a hole-punch. That way you’ll
have somewhere to put the unending stream of doctor’s notes
and bills and other cancer-related pieces of paper that will come
sailing into your life.
When it comes to chemo, expect the unexpected.
I heard lots of theories—the first infusion is the worst because
of the anticipation. No, it gets worse each time. After living through
my wife’s six sessions, and talking to many doctors, nurses
and women about the nature of chemo, I can only tell you that you
can’t count on anything. Some women sail through with minimal
problems. A small number suffer extreme nausea and fatigue and other
debilitating side effects. And the majority fall somewhere in the
middle. But one rule usually holds true: The toll that the chemo
drugs take is cumulative. That is, your wife will most likely feel
(and look) worse and worse as time goes by.
Losing hair can be more traumatic than losing a breast.
So if your wife is obsessing about her bald head, don’t grow
impatient (as I did). Many women have since told me that staring
in the mirror at a hairless head during chemotherapy was far more
devastating than undergoing a mastectomy. A loose blouse can conceal
the loss of a breast, but even the best wig is, in the end, just
a helmet of hair.
Splurge. Maybe every cancer doc should play that
old song, “You Don’t Bring Me Flowers” in their
waiting room as a cue for the clueless guy. Even when I had bad
news to deliver after a doctor’s phone call, my wife was somehow
less depressed if I brought a beautiful bouquet of her favorite
blooms. Some men make even grander gestures: One woman told me how
her husband gave her a diamond and sapphire tennis bracelet (and
matching earrings yet) during her chemo months. Of course, the truth
is that it doesn’t matter what kind of gifts you buy (well,
definitely not a blender). The point is to show your wife you are
thinking of her in a loving and romantic way.
Don’t be shy about flirting. Actually, my
wife’s oncologist did tell us that intimacy was still possible
during chemotherapy, and we’re glad he did. If she’s
not in the mood because of surgery, chemotherapy or radiation side
effects, she’ll let you know. But imagine how she’ll
feel if you never try—as if breast cancer has stripped her
of her sexuality. And you should also remember that sexual intercourse
isn’t the only kind of intimate contact in a couple’s
life. Sometimes what your wife needs most is a good cuddle, a back
rub, a foot massage and those three little words that are sometimes
hard to say, but that will never mean more to her than they do now:
I love you.
The year ahead will not be the year you thought you were
going to have. You’ll spend time and money on things
you hadn’t planned. Maybe you won’t have a spare afternoon
to fix the leaky faucet. Maybe your wife won’t be up for a
vacation you’ve been planning. “I always considered
that year [of active treatment and recuperation] to be a sacrifice
you make in the interest of the rest of your life,” says surgeon
Sherwin Nuland, author of the award-winning How We Die. And when
the year is up and you’re ready for some semblance of normality,
that leaky faucet will still be there, just waiting for you.
Marc Silver is an editor at U.S. News
& World Report and author of Breast Cancer Husband.
Hear him speak at the 2005 Patient & Survivor Forum in Dallas
by signing up at www.curetoday.com/patientmeeting.
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