Josh isn’t so into talking and sharing as I am, and so I don’t think he gives people a chance to offer him support. Typical guy. And sadly, I don’t think caregivers get as much attention or support as cancer patients, even though their suffering and loneliness are just as great.
34
Chipper
On May 20, I had my laparoscopic oophorectomy (which is a fun word to say). My left ovary was about two to three centimeters bigger than it should have been. An intraoperative biopsy was performed on it and confirmed that the growth (which was inside the ovary) was metastatic colon cancer. About one cubic centimeter of that cancerous tissue was immediately handed over to a courier for transport to a laboratory across the river in New Jersey where portions of it were successfully implanted into five mice, a very good number, I am told.
My mice have since been moved down to Baltimore, to the main laboratory. I will know in a couple weeks whether the graft of my cancer cells into these mice has taken hold and, if so, they will be cloned for personalized experimentation. While the right ovary looked normal, out of an abundance of caution, it was also removed, together with my fallopian tubes. I’m losing parts at a pretty good clip now. As the final pathology would later reveal, appearances were deceptive and the right ovary tested positive for metastatic colon cancer as well. All else looked normal in the abdomen, including all organs located therein as well as my peritoneum. Forty milliliters of ascites—fluid—were found, however. The word “ascites” terrifies me; I often hear it associated with end-stage cancer, where hundreds of milliliters can build up in the abdomen as the cancer overruns the body. Fortunately, the pathology report declared the ascites to be negative. The surgeon also flooded my abdominal cavity with saline, then withdrew it and had it tested for cancer, something that was also done during my post-HIPEC diagnostic laparoscopy. That saline was negative for cancer, as it was in October 2014. If indeed there is no cancer in my abdominal cavity, then it certainly indicates that the HIPEC surgical treatment from March 2014 has withstood the cancer assault well.
It was the best news I could have asked for under the circumstances, minus the cancerous right ovary. But then again, metastases to the ovaries are often bilateral, and besides, what is the difference really between having one cancerous ovary and two? That’s how you start to think when you’ve been living with metastatic cancer for a while: Oh, what’s the big deal with another tumor? Oh, what’s another affected organ?
My surgical recovery was about as uneventful and painless as they come. I don’t think I even took one Percocet. Surgery started around 1:00. I was home by eight that evening, and all I showed for those hours were a hunched-over stance when I stood and three tiny bandages covering three tiny holes. Oh, and I had trouble peeing for the first twelve hours, an aftereffect of the catheter used during surgery. I marvel at how they were able to remove two organs, one of which was grossly enlarged, through those tiny holes. In case you are wondering how exactly that was possible, the surgeon chopped them up. And to prevent cancer from spreading everywhere (which is what would have happened if she had cut them where they lay), she detached the ovaries, lifted them into a bag she had inserted under my skin, performed all the chopping inside that bag, and then sucked the entire bag out through one of the three tiny holes. Medical science is simply amazing.
I continue to be baffled by how either the scans missed this massive growth in my left ovary all this time or the cancer managed to grow to the point of detection in the span of six weeks, which was the period between my last sets of abdominal MRIs. The doctors can’t answer that question, either. Really reassuring…My oncologist is less inclined to believe that the cancer grew that rapidly and so is thinking that the scans missed it. And obviously, the cancer in the ovaries was resistant to months and months of treatment. Also very reassuring…This time I am really being facetious.
I restarted treatment ten days after the surgery. The three treatments I’ve had since the surgery have been uneventful. I have been experiencing pain in my hips and knees. I cannot determine if the pain is bone- or muscle-related. Perhaps it’s attributable to the sudden loss of all the estrogen that was once produced by my ovaries. Perhaps it is due to weight gain from the steroids and my failure to go to the gym for months and months. Or perhaps I can blame it on all the hours I spend on my feet now taking the dog out in my efforts to house-train him.
The five weeks after the surgery found me pretty much MIA from social media, and to a lesser degree, my friends and family. Unlike prior periods of reclusiveness, this one was not because I was in some dark cancer-induced malaise. For the last nearly three years, I have always chosen to confront my disease head-on, to live it, embrace it, forcing myself to walk through the fires and feel the pain, in the belief that I would emerge from the other side stronger and wiser. But not this time. Running and hiding was what I wanted. It was what I needed as part of some kind of mental and emotional recuperation.
My little bichon frise puppy, Chipper (named after the Atlanta Braves player Chipper Jones—Chipper came from Atlanta and Josh is a fan of the Braves), facilitated that objective. Two days after my first postsurgical treatment, as I was crashing from the steroidal high, Josh, the girls, and I drove to the airport, searching for an obscure building in the bowels of La Guardia, to which little Chipper was brought. He was adorable, all white fluff with dark black eyes and velvety, floppy ears. And I was terrified as I clutched his crate in the passenger seat, wondering how I was going to have the energy to take care of yet another living thing, and a living thing that was even more foreign to me than a newborn baby had once been, no less. He came home and almost immediately pooped on our wood floor as I lunged to place a wee-wee pad under his butt; I wasn’t fast enough. That night he cried incessantly, waking me up every hour. I would take him out of his crate, he would suddenly run from me (a sure sign that he was about to do his business), I would run after him with a wee-wee pad, he would pee or poop not on the wee-wee pad. I would clean up the mess and put him back in his crate, and then the cycle would repeat an hour or two later, and on and on this seemed to go over the next few days. I was exhausted thanks to the sleep deprivation and the treatment, on the verge of hysterical tears, convinced that I had made a serious error in judgment by getting this dog and wondering if the breeder would take him back if I begged.
House training was made much more difficult by the fact that we live in an apartment building and by the vet’s directive that I not take Chipper outside (or that at least I prevent his paws from touching the ground) because he wasn’t fully vaccinated yet, and it would be another seven weeks before he would be. The streets are apparently rife with deadly canine diseases. As per my dog trainer’s recommendation, I kept the dog in his crate and would carry him out on a leash every couple hours into the stairwell, where I laid down a couple wee-wee pads. With the leash, I kept him on the pads, but Chipper refused to do as I wanted. He would sit, lie down, and roll around. I would sit on a step while he lay on a pad, bored, waiting. I spent hours in that stairwell, fruitlessly waiting. And apparently, Chipper was waiting, too, because invariably the moment I put him back in his crate, he would pee or poop. And so it went.
After a week of this, I decided to willfully disregard the vet’s instructions, and I carried Chipper outside—I didn’t know this, but when you carry a dog, he won’t eliminate on you, just as he would never eliminate on his mother. And miracle of miracles, he peed and pooped almost immediately! I decided that venturing outside with him within a limited area where there are few dogs and most of the dogs are from my building and are therefore more trustworthy healthwise involved minimal risk, and a risk that I had to assume because my sanity hung in the balance.
Once I started walking Chipper outside, I discovered something extraordinary, at least it was extraordinary for someone like me, who comes from an animal-hating family. I learned that people, at least most people, love dogs. When my children were babie
s, I got the occasional smile from a stranger gazing at my adorable offspring; on the whole, though, few people care about cute babies. But a puppy? Unbelievable! Young, old, black, white, brown, businessmen, garbage collectors, construction workers, Goth girls, tough guys—everyone from all ages and all walks of life and every part of the world has stopped to pet and play with my dog. We engage in conversations about their dogs at home, about how they are still grieving their dearly departed dogs, about how they wish they could have a dog.
My nurse-practitioner (another one of those fanatics who prefers dogs over babies), upon learning I had gotten a puppy, insisted that I bring him to the cancer center when I came for treatment. I was nervous about potential complaints, as was my oncologist. But my nurse-practitioner blew off Dr. A.C.’s concerns and told me to do it anyhow. I was concerned about leaving Chipper home alone for so long, so I did as I was told, carrying him in a little bag that I tried to hide as I sneaked past the security guard. The waiting room was packed with at least fifty people, as usual. But what was not usual was the sudden burst of energy and life that swept through the room when people realized there was a puppy in their midst. Staff came out of the internal offices and exam rooms, squealing with delight. Patients and their caregivers smiled and stared, and some even rushed over to pet and hold the dog. And little Chipper took it all in stride, basking in the attention and then sleeping on me as I received my infusion. He did not once bark or cry or do anything remotely troubling while at the cancer center. I should mention though that there were a few people in the waiting room who did not look at all excited to see the dog. In fact, I might even characterize their expressions as ones of incredulity and disgust. They were the Chinese people, those of my parents’ generation. I could relate.
House training is going well, now that I know what to do. Chipper stopped crying during the night after three days and now sleeps through without incident. People told me having a puppy was like having a newborn baby. I don’t agree at all. When I don’t want to deal with Chipper, I stick him in his crate. He sleeps through the night and doesn’t require endless breast feeding. I don’t need to change any diapers. He doesn’t cry or bark. When I take him out, I don’t have to bring tons of baby paraphernalia with me. He is much, much easier than a baby.
And the best part about him is his simplicity, the complete lack of complication. I have no expectations of him to be a Rhodes Scholar or concert violinist one day, and he doesn’t chafe under or resent my demands. We don’t have a difficult relationship in which I have to lecture him about the value of money and how I can’t buy him a toy whenever he wants. He has truly basic needs that are generally very easy to satisfy and that, I’ve discovered, I am capable of fulfilling. And he loves unconditionally, with a purity that is in its own way quite beautiful and inspiring. It is in the performance of our daily, mesmerizing rituals—me squatting with a plastic bag in hand to pick up his waste, me tossing a squeaky frog as he eagerly waits to give chase, me brushing out the tangles in his snowy coat—that I find that he and his simplicity shield me from what I don’t want to deal with right now, and he allows me to continue with my pretense for as long as I want. And within those rituals, there is no cancer, no life, no death, no future, no past, not even that day or hour or even minute, not even Josh or the girls or me; there is just that second, and then the next and then the next. And there is just him.
35
Courage and Love
Who has more courage? (1) The cancer patient who presses on with grueling treatments that are of dubious benefit in the infinitesimal hope that they will prolong life until something better comes along? or (2) The cancer patient who simply walks away, choosing to feel good for as long as she can and then seeking palliative treatments only to mitigate pain before the inevitable happens?
This is a question that has plagued me for nearly as long as I’ve known that I have cancer. As you may have surmised, I put a great deal of weight on courage and bravery. I want to be remembered as a courageous person, one who, instead of running from cancer and death and begging for my life like a wild, crazed animal, stood there and stared them down, all the while acknowledging and embracing the reality and my fear, anger, and sadness, a stance reflective of an aspirational inner strength, dignity, grace, and beauty. But which path produces that result? Based on how we as a society seem to love sports stories and movies about protagonists overcoming impossible odds, I believe the general consensus and more popular view is number 1. I understand that—the long-suffering patient who endures so much to spend just one more day with her loved ones, even if it comes at an incredible emotional and physical toll. But then again, it takes tremendous courage to stop all treatments and to let the disease run its course, because then gone is any semblance of a safety net as that person invites death to quicken its arrival. Isn’t that person then truly staring death in the face? Isn’t that person then choosing death on her own terms with dignity and grace? Or is that person truly a coward, a horrible wife and mother, too weakened, defeated, and exhausted to fight any longer, not even for the faintest promise of one more day with her beloved children, handicapped by an inferior love that does have limits?
Or maybe the answer to that question is personal to each individual, based on a subjective determination of which path is easier—if there is such a thing—and that true courage goes to the person who takes the path more difficult for that person.
For me, the easier path, the path of less resistance, is number 2. And I suppose that if I take that path, then I am a coward for not choosing to stay on and “fight” like the “warrior” I’m supposed to be and once was. I hate the rhetoric of war that pervades the cancer world, even though I once used it liberally. With fighting and war, there is a winner and a loser. Will you judge me then a loser when I die because I succumbed to my disease? Will you judge me a loser if I simply choose to stop treatment and to stop actively “fighting”? If you do, so be it.
It seems that I have come to the end of the road of tolerable treatment options, and therefore there is a particular urgency in my coming to an answer to this question. I had scans in mid-June and received my results a few days later. While my lungs are overall stable (one tumor’s notable shrinkage and another tumor’s growth, with all other lung tumors remaining stable), the abdominal and pelvic MRI showed an enlarged peritoneal lymph node as well as a questionable spot around my uterus. The latter may be postsurgical “stuff,” but it is impossible for us to know without another surgery. In addition, my CEA continues to rise. Dr. A.C. is not a fan of the current treatment (irinotecan and Avastin). Who could blame him? This recycling of prior drugs was really a last-ditch effort by me to try the only remaining likely effective treatment available in the hope that these drugs’ prior use had not as yet desensitized my cancer cells to them. Dr. A.C. believes that continuing with the irinotecan and Avastin may make us feel good because it seems like we are doing “something,” but he doesn’t think that we would actually be doing anything beneficial, at least not for much longer. There remain two FDA-approved drugs for treating colorectal cancer, one of which is so toxic I swore I would never take it and the other of which is highly unimpressive and tantamount to a waste of time.
Dr. A.C. then asked me if I wanted to do something “crazy.” I had to hear what his “crazy” idea was, of course. Because he doesn’t believe that single-agent immunotherapy will work with the specifics of my tumor biology, he thinks we need to attempt combined immunotherapy, and the drugs he has in mind and has access to are ipilimumab (brand name Yervoy) and nivolumab (brand name Opdivo). Both are FDA-approved drugs that have been used with success to treat metastatic melanoma. Each drug forces two different receptors on cells that constitute part of our immune system to identify cancer cells as unwanted and thereby allow the immune system to kill them. Dr. A.C. would also throw in a little radiation therapy (probably directed at that peritoneal lymph node) to trigger an initial immune response and jump
-start the immune system. This would be done “off trial,” meaning outside of a clinical trial.
Sounds exciting, huh? Crazy always sounds exciting, but then there are certain complications. First, there’s the matter of getting the drugs for off-label use, since the FDA hasn’t approved them for colorectal cancer. Dr. A.C. seems to have some connections with the pharmaceutical companies, though, so I think he would succeed, although he himself said it wouldn’t be easy. More concerning to me is that the use of the drugs—known as anti-PD1 and anti-CTLA4 inhibitors, respectively—would preclude me from future clinical trials that include the use of these or any other anti-PD1 and anti-CTLA4 inhibitors. Of course, this is only a concern if I want to participate in clinical trials.
Dr. A.C. said he would probably opt for a clinical trial over “crazy.” He wants whatever trial I do to be one with combination immunotherapy. He says he will talk to his contacts at Memorial Sloan Kettering, Columbia-Presbyterian, and Johns Hopkins, all places that have strong immunotherapy departments. If I want to go for trials, I will also have to do the research myself. It’s a daunting task.
Most of the trials available are Phase I trials, trials where the experimental drug is being tested for safety, not effectiveness. That’s a frightening thought, isn’t it? I’ve heard people say that the odds of a clinical trial working are 5 percent. I think they’re much less than that, more like 0.1 percent.
The Unwinding of the Miracle Page 23
