Book Review: The Emperor of All Maladies: A Biography of Cancer

BRIAN KLEPPER

The opening page of Siddhartha Mukherjee’s The Emperor of All Maladies begins with a quote by Susan Sontag that is so on-point, yet so rare and fresh, that one can’t help being excited by the prospect of what’s to come.

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Joy, With Reservations

A very quick update. Today was 3 weeks exactly since Elaine’s final chemo infusion, and we had an appointment with the terrific Dr. Buckley, who would give us an update. Last Friday she had a PET scan, which shows the progress of the tumors and provides a basis for evaluating the status of her cancer. Needless to say, we’ve been on pins and needles for the past few days, hoping the report would be good. We are not superstitious, but somehow we found ourselves not wanting to hope too much, for fear of jinxing the result.

The Moment

At 11AM Wednesday, Elaine called to say that she was done and on the way home. She had just finished her 8th and last chemo infusion. It seems like yesterday to Elaine and an eon ago to me that Dr. Buckley told us she needed six months of treatment and we steeled ourselves for the long haul. Now we're finished, except for periodic checks, at least unless the cancer returns and we need to go through another round of chemo therapies.

Who We Are

Receive news of cancer, and it immediately becomes all consuming. But at some point, day-to-day life returns, although slightly askew. Now that we’re face-to-face with the gravity of our circumstance, it has become Life, With Cancer. But as my close friend Jerry Reeves, a pediatric oncologist in his first career, observed, “You don’t stop being who you are, just because you have cancer.”

Elaine has been as positive and uncomplaining as is possible to be. We’re simply working our way through it. But we try to not become morbid either. Playing the cancer card is a way to poke fun at how crazy our situation is, and to remind each other that life goes on.

So, in the snappy repartee that dominates a fair portion of our dialogue at home, the tumor humor plays out something like the following:

Early Morning. I’m up and am doing emails in the living room. Elaine calls out from the bedroom.

“Where’s my coffee! I have cancer, you know. I can’t be getting up to make my own coffee!”

There are variations on this theme.

Her: Boy, I could really go for a hamburger with fries and a shake.

Me: You’re shameless. Don’t you have any standards?

Her: No. I have cancer.

Exhausted

Eight years ago, when I was recovering from open heart surgery, I wrote that it was difficult at times to stay focused on recovery and feeling better. That was a big surgery, yes, but within two weeks my prospects were good again. There was no protracted treatment or life impact, except of course for focusing on living a healthier life. That experience proved to me that a positive attitude is both a discipline - a constantly cultivated perspective - as well as key to a healthy outcome.

But Elaine’s experience is showing us that maintaining a sunny disposition becomes far more difficult as the challenge drags on, and the prospects for getting better become more uncertain. The most difficult part of a long disease could be the exhaustion that ultimately can overwhelm, or at least shake the resolve of, even the best efforts to remain positive and clear. After 6 months that have included 5 hospitalizations, 4 surgeries, an emergency visit and 5 cycles of having poisons infused into her body, Elaine and I are having our resolve tested. And we know we have a very long road ahead.

The Way It Is

On Thursday Elaine went in for her 4th of 8 every-three-week chemical infusions, a 4-hour exercise involving three very powerful drugs, followed by another 24 hours later. It is a communal event. A group of women sit together, each receiving a specific mixture. Some have been fighting cancer for 10 years or more. It goes into remission, then recurs. The doctors dig deeper and deeper into a limited arsenal to find something the cells will respond to. It is not a pleasant prospect.

A couple months ago I visited close friends, both oncologists, who now live in Truckee, CA, just outside Tahoe. Elaine was just beginning the chemo treatments. Larry told me, “The first round is the worst, because its unknown. After that, people say, “Well, it wasn’t pleasant, but I can get through this. Then around the 5th cycle, they’re literally sick to death of it and thinking, “Oh, just go ahead and shoot me!” Elaine’s not there, though.

Learning To Live With It

Dear Friends and Family,

It has been a little more than 6 weeks since the surgery where Elaine’s doctors found her tumors, and about 10 weeks since she first presented complaining of symptoms. Her wounds have healed beautifully. She is strong and her spirits are high. Most important, we’re over the shock, and so we’ve settled into the stark truth that this is about how we can manage a very serious situation over a very long period of time.

The texture of our lives has changed. Of course there’s the feeling that we’re sitting under the Sword of Damocles. But suddenly Elaine doesn’t have a day that’s chock full from beginning to end, and sometimes I can see she’s a little at odds that she doesn’t have as much to do as she’s used to. She tires easily, and will take at least one and sometimes several naps every day. She lost a good deal of weight through the surgeries, and must consciously focus on regaining at least some of it. She has lots of minor pains and inconveniences associated with her condition, but those are gradually ameliorating.

Saturday, 5/22

This week Elaine entered an important second stage in her cancer experience: the beginning of her chemotherapy. Monday night will mark one month since a tremendous abdominal surgery. By earlier this week, she was walking 3 miles each day on the beach, and Wednesday she did 4 miles. There is no way to describe her recovery except “spectacular.”

Sunday, 5/09

We’re just in from a 40 minute walk down onto the beach and back. Even at a less brisk than our usual pace, Elaine covered something more than 2 miles, remarkable when you consider that we’re at 13 days post-op and 9 days post discharge.

Last night, we spent an hour and a half at a 50th birthday party for our great friends Claudia and Giorgio Azzalin who, incredibly, were born on the same day in Torino, Italy and, even more amazingly, were both infused with a lighthearted sense of adventure, warmth and charm. Giorgio, in typical fashion, announced that having Elaine there was the best present of all.

From The Health Care Blog: The Makings Of A Great Outcome

The Makings Of A Great Outcome

Last week my wife and best friend, Elaine, had massive abdominal surgery. We fully expected her to be an inpatient for a week, but she was home in four and half days. To watch her recover was to see what happens when everything converges: the deep knowledge and skills of excellent, humane physicians; a capable, caring clinical staff; wonderful new technologies; and a lifetime of eating right, being fit and tending to one's health.
She lost two units of blood during the operation. It was four days before she’d be allowed any fluids by mouth, except ice chips, and 5 days before she’d have any food, which started with broth and Jell-O.

But the day following surgery, she moved from her bed to a chair and sat vertically for an hour! Twice! The first time she was dreadfully nauseous. The second time was better.

The second day, she circumnavigated the rectangular halls of the floor - probably an eighth of a mile - twice!

Friday, 4/30

Early this morning, Elaine downed half a piece of french toast that would have made a Roman legionnaire shudder, convincing the medical staff that solid food, such as it was, was in her repertoire once again. It was enough for Dr. Swartz, who promptly discharged her.

We gathered up our things, rolled her out to the pickup circle and were out by 9:30AM. Home 45 minutes later, after a shower and a shampoo, she set up headquarters in the bed, then promptly fell asleep from exhaustion. The word “ecstacy” was murmured in there somewhere.

Wednesday Night, 4/28

To watch Elaine recover is to see what happens when everything - the deep knowledge and skills of excellent, humane physicians; a capable, caring clinical staff; wonderful new technologies; and a lifetime of eating right, being fit and tending to one's health - converges.

Consider this. Less than 48 hours ago, Elaine had massive surgery: a radical hysterectomy, removal of parts of the appendix, bladder, ureter. Then reattachment of the ureter to the bladder. And much more. In the process, she lost 2 units of blood. She has had an IV drip, but hasn't eaten since Sunday, and until noon today her only fluids since Sunday have come from sucking ice chips.

Tuesday Night, 4/27

Today Elaine is back with us. She is of course still weak, but the fabulous epidural block has kept her pain to a minimum. She's managed to get out of bed and across to a chair twice, and she's got her wit and her wiseacre humor back. Tomorrow I think she's going to try walking, which is remarkable when you appreciate how traumatic the surgery was.

Monday Night, 4/26 - Third Surgery, Discovery

Elaine is out of a very big extensive surgery and doing well. She's awake, lucid and, because of a wonderful epidural, not feeling a lot of pain.

There is some bad news that Elaine and I have already talked through. We agreed that this email, which is going to family and close friends, should be open and honest.

Monday Night, 4/26

Elaine is out of a very big extensive surgery and doing well. She's awake, lucid and, because of a wonderful epidural, not feeling a lot of pain.

There is some bad news that Elaine and I have already talked through. We agreed that this email, which is going to family and close friends, should be open and honest.