“We have so many treatment options available to treat what you have,” said the first oncologist seeing Uzma upon diagnosis of stage 4 breast cancer, “that these days we manage it like a chronic disease.” The renowned oncologist Uzma saw for a second opinion said the same, as did the one she saw for a third opinion at an institution that is renowned globally for cancer treatment. It’s as if they are trained to read from the same script. It’s a lie.
In doctor-speak, a chronic disease usually means diseases like heart disease, high blood pressure, high cholesterol, diabetes, etc. You get the picture. Every person with high blood pressure has probably heard their doctor say, “High blood pressure cannot be cured, but it can be controlled. You will have it for the rest of your life. But if you take your medication as prescribed, you will be okay.” Some patients with chronic disease get upset at the prospect of having to take medicine for the rest of their lives. But no one with high blood pressure thinks that the rest of their life means 3-5 years.
There may be many treatment alternatives available for Stage 4 breast cancer, but it is nowhere like a chronic disease. Stage 4 breast cancer has a median survival time of 3 years. In other words, half the women who suffer from it die within 3 years of diagnosis. It has a five-year survival rate of 22%, which means that only about one-fifth of the women with this affliction are alive 5 years after diagnosis. At 10 years only about 1 in 10 are still alive. How many diabetics do we know who died within 3-10 years of diagnosis?
And what are those 3-5 years like for those four-fifths to half of Stage 4 breast cancer patients? If they are anything like Uzma’s last 3 years, they are a time of trying one chemotherapy regimen after another while cancer continues its long, unending march. And chemotherapy is nowhere like medications for diabetes, cholesterol or heart disease. It is a blunt tool, a cannon brought to a fight where we should be using snipers — only we don’t yet have the targeting mechanisms for snipers to be effective. We have the promise of immunotherapy just over the horizon, but it remains a mere promise for most individuals with Stage 4 cancer today. Uzma was rejected as a subject for an immunotherapy study at the National Cancer Institute. As I said, we don’t yet have cancer-snipers. So we use cannons. Between the guerilla army that is metastatic cancer, hiding inside one organ then the next, and the cannon that is chemotherapy, there is a lot of collateral damage. The temple that is the human body slowly crumbles before one’s very eyes.
Chemotherapy, depending upon the drug, affects the patient’s skin, her hair, her bones, her brain, her nerves, her heart, her soul. Yet, she keeps taking it because in hope that the regimen could put her in remission. Sometimes, it’s just an elusive dream of few months-long breaks in cancer’s march is what makes a person keep on standing in front of one cannon after another. Eventually, cancer takes over enough organs or enough of key organs that the physical edifice can take no more cannon fire and active treatment is discontinued.
Stage 4 breast cancer does not behave like diabetes, high blood pressure, and heart disease, and oncologists need to stop using the chronic disease metaphor. It is unfair to patients and their families because it creates unreasonable expectations. I think I understand why they use this metaphor. It is probably to provide reassurance so that the diagnosis of stage 4 cancer does not end up draining all hope right from the get-go. But the reassurance comes at a price — one that is paid ultimately by the patient. But, that’s a topic for another post.
The day after the incident I described in my previous post, the surgeon reached out to me letting me know that he had ordered Uzma’s book. I shared my blog post with him. He thanked me and said this:
“Your words are too kind. I like to think I am not like most surgeons. My father was a family doctor. My mother, brothers and I could not believe how many of his patients went to his wake and funeral. None knew us. It was because they knew how much he cared for them.”
“I think most surgeons have difficulty really empathizing with patients and families. Maybe it (avoiding empathizing) makes it easier to cut another human’s body to make them well. I don’t know.”
I got two things from this interaction.
First, and most importantly, to what extent did this physician’s experience of his father’s funeral left a mark on him? The compassion he experienced in his time of loss probably made him more likely to show the same for his patients and their families. In that sense, paying it forward with small acts of love and compassion can create a virtuous cycle. Just as those patients of his father don’t get to see how he is treating his patients, we may not get to see the results of our compassion, but they are there. To the extent that this may be true, it is a lesson in showing compassion to others without caring about its outcome. It may end up meaning a lot to someone years later.
Second, his tentative explanation for why surgeons may have trouble empathizing makes sense to me. Modulating one’s emotional connection to a lower level than a primary care doctor is probably wise for a surgeon. Though, as I noted in my previous post, he was the only physician, not the only surgeon, calling to offer condolences. Something for which I will be forever grateful.
Postscript: After writing my last post, I thought I should have revealed the surgeon’s name. Both Uzma and I always thought that we should be at least as prepared to write reviews of good experiences as we are in writing reviews of negative experiences. I am glad that I had the interaction that led to this follow up post. Because the surgeon shared his personal story, I did obtain his permission before letting you, the reader, know. He is Ermilio Barrera, MD and this is his official webpage.
The other day, about 3 weeks after we buried Uzma, I was getting a haircut at the neighborhood barber’s. The friendly guy that he is, he asks, “So, what’s new?”
Do I tell him Uzma died? Do I not? I decide not to dwell on the question too long. A pregnant pause with one’s barber at this point would be weird. In a split second, I reply, as if instinctively, “Not much. How about you?”
He starts telling me of the vacation he is planning with his family for summer. My mind wanders off.
I have forgotten how to plan vacations this far ahead. The last time we planned a vacation, staycation or even a weekend trip months ahead was a while ago; looking back at Uzma’s stage 4 cancer journey, it seems like a lifetime ago. Most of our trips in the previous few years have been last-minute adventures. If Uzma’s condition and treatment were stable close to some break coming up for the kids, we would go. “I should also start making plans now,” I tell myself, “so that once again we can start getting whatever qualifies as a bargain these days for air tickets.”
How do we decide who to tell and when to remain silent about a calamity that has befallen us? I’m not sure there are any rules for this. Will people know what to say? Will they become uncomfortable?
Will they say something irritating like, “You’ve to be strong for the kids.” As if I don’t know that! Or will they say another common line, “At least she is not in pain any longer.” Yeah, that’s because she is dead! “Is that better?” I feel like asking. But I don’t. I don’t want to make them uncomfortable. Some people will say, “I am sorry for your loss. I wish I could do something that would ease your pain. I am here for you.” When said sincerely especially by someone who you know will check in on you soon, those sentences have an intriguing soothing power.
In the South Asian community, Uzma and I often heard of and from people who didn’t share their cancer diagnosis even with close friends. Sometimes, not even with close family members. We would often wonder what that was about. Why the stigma about something no one could accuse you of bringing upon yourself? After all, cancer is not like a mental illness whose victim can be casually and cruelly blamed for bringing suffering upon herself. It couldn’t be blamed on a lack of willpower. Uzma believed it had to do with the practice of arranged marriage in our community. If it became widely known that a parent had cancer, her son or daughter might be shunned when it’s time to search for a bride or groom. I don’t know if that is the reason, but it seems as good as any.
Uzma did not hide her suffering. She shared it. She hoped to inspire more people to share and be open about their cancer so that all could learn from each other. Sharing brought incredible emotional support from both friends, old and new. Not just to her, but also to her family. Whatever she gave of herself, she got in return many times over. I am not sure about the term “Facebook friends.” It is often used with some disdain. But I’ve seen Uzma form meaningful emotional connections with people she has never met in person. When you do that, isn’t a Facebook friend just a real friend we haven’t yet met?
Hospice staff encouraged us to tell the kids’ schools about mom being in hospice. We did. I also told the schools when Uzma passed away. I let the parents of the kids’ closest friends know. “Who else can we tell?” some asked. “Tell whoever you think would want to know,” I said. I am glad I did. Many of our children’s friends came to the funeral with their families. Some of their teachers came too. Our kids felt incredibly supported. Many friends offered condolences in their own way when they went back to school. But one boy kept telling our daughter that he didn’t believe that her mother had died. That it was a lie. That little twerp, I thought. But he was the exception.
“How do you like it?” asked the barber as he handed me a mirror so I could see how he had cut my hair on the back of my head. It was fine. I paid him, tipped him, made some small talk and left.
That evening I resumed my train of thought, how should I have responded to that question, “What’s new?” Obviously, a lot is new. Uzma is not around. I am a single parent. The only breadwinner, not just the primary one. I am no longer one member of a team of two responsible for the physical and emotional wellbeing of our kids, I am the team. All family decisions, big and small — from what to cook tonight, to which dishwasher to buy to replace the one that just broke, to the kids’ education are now mine alone. Soon Uzma’s name will no longer be there on various financial accounts, tax returns and even on return address labels. It won’t be on travel itineraries. Until our son grows up a bit more, I will have to get used to being the only one driving the family around and doing so with an empty seat next to me. She won’t be there on her birthday, on Mother’s Day, on the kids’ birthdays. All that, and much more is new.
I am glad I didn’t unload all this on the barber. If only he knew the bullet he dodged! So who should we tell, and who should we leave alone. I am sure there’s no one single approach. I could take the path of looking back at my last meeting with a person and recalling wither she asked about Uzma then. Uzma’s existence had to have mattered to them for her non-existence to matter.
Clear cut this approach might be, but it would be antithetical to Uzma’s attitude, from which I could learn a lot. Her stance was one of openness to new emotional connections. After much reflection, I decide that my rule of thumb will be to share my loss with anyone if the setting is conducive to active listening. A barbershop is not, so it was still okay that I replied, “Not much.”
Yesterday, a phone call from a surgeon reminded me how much I will miss Uzma’s gut feeling about people. And it taught me how little it can sometimes take to break a stereotype.
Before I recount the tale, I want to share an old joke that is somewhat of a cliché in medical circles. “What is the difference between God and a surgeon?” The answer is: “God doesn’t think he is a surgeon!” The implication is that surgeons are arrogant. The stereotype goes further. Surgeons are thought to have poor bedside manner and a low opinion of those who are not surgeons and thought to get away with it only because they don’t treat patients on an ongoing basis — after the surgery and its immediate aftermath, they are done.
Back to yesterday’s call. It was from the surgical oncologist who followed Uzma regarding her screening mammograms and breast ultrasounds, did her mastectomy over 5 years ago and then followed her regarding her periodic breast MRIs. He was the one who called Uzma on that fateful Saturday more than 3 years ago letting her know that the breast MRI had incidentally detected the spread of breast cancer to the liver. After that Uzma had to leave the world of surgical oncology for good.
Following her first appointment with this same surgeon a few years before her initial diagnosis, when she was still getting screening mammography, Uzma said to me, “Hope I never have to go under the knife, but I wouldn’t mind him being my surgeon. I can tell he is an inherently nice man and good physician.” At least 9 times out 10 her instinct about people was on the mark.
So, it’s no surprise that of all the physicians and nurse practitioners who examined and treated Uzma over the past 5 years, whether in our local hospital or at reputed one downtown, he was the only one who called me to offer condolence. He said, “I just heard today that Uzma had passed away. I am very sorry for your loss. I know I am preaching to the choir, but she was an extraordinary person, and it meant a lot to me to be her doctor.” Maybe I imagined this in my grief, but his voice quivered with sorrow.
My phone record shows that the call lasted a mere 3 minutes. And it meant the world to me, the grieving family member of his former patient – someone he had last treated seemingly eons ago in the journey of metastatic cancer. He made me feel significant. He made me think that my wife’s life and death were of meaning and significance to at least one person in the healthcare system. My heart overflows with gratitude for that.
To me, this one doctor, with this one phone call, also showed that conforming to stereotypes is a choice. As far as I am concerned, he forever broke his specialty’s stereotype. He didn’t just break it, it drove a truck through it. In 3 minutes!
May his tribe increase!
Postscript: For an update on this incident, read Update On Stereotype-breaking Surgeon
Uzma’s first treatment for Stage 4 breast cancer was an oral drug — a medication to take by mouth every day at home. It cost over $11,000 a month. Uzma’s cancer was slow-growing but relentless. It would respond to medication for about 3 months and then resume its onward march. Except for the first drug; it restrained her cancer for almost 9 months. The last cancer treatment she got before being referred to hospice was also an oral drug. It too cost $11,000 a month. Both drugs had a $3,000 copay.
Most of the financial cost of treatment for Stage 4 cancer comes from the price of medications, repeated blood tests, recurrent scans and the fees for the procedure of chemotherapy infusions. Yes, with good insurance once only pays deductibles, copays and out-of-pocket maximums. Not everyone has good insurance. And even if you, it all adds up very quickly. We reached our out-of-pocket maximums every year of Uzma’s cancer treatment.
There are also the treatments one has to take to manage the side-effects of cancer treatment. Insurance covers some of those medications. But many are over-the-counter (OTC) drugs. With one cancer treatment, we bought Dulcolax® and Colace® in bulk to treat constipation. With another, it was Imodium® for diarrhea. There was Aleve® and Advil® that Uzma took like candy for neoplastic fever — the daily fever that often accompanies the spread of cancer to the liver. Prescription medications for neuropathy, nausea, and vomiting were often in the mix. Uzma would try one different medication before finding the one that worked the best for a particular side-effect. Our trips to the pharmacy became as routine as those to the grocery store. And we had leftovers to dispose off from almost every kind of medication she took.
The cost of cancer is not limited to the price of medications. Uzma worked through her first bout with cancer. taking only two weeks off after mastectomy and a week off towards the end off towards the end of radiation treatment. According to a recent article in the Boston Globe, about two-thirds of cancer patients who work reduce their work hours by choice or otherwise. After the recurrence, when her cancer became Stage 4, Uzma took the summer with plans to return to work in fall. But then she decided that since her lifespan had been dramatically shortened, she would spend as much time as possible with our kids and pursue her hobbies. She would later say, “This is my retirement. I will get only a couple of years of it and I intend to make the of most of it.”
There are other costs. Travel to and from the clinic where the patient receives treatment adds to the cost. There are lost wages not just for the patient, but also for any family member(s) or friends(s) who accompany her to various treatments. Families often have to struggle to find time to plan and cook meals. They end up eating more frozen or restaurant meals, which are less healthy and more expensive than home-cooked meals. Since Stage 4 patients will be in treatment for the rest of their lives, there’s no end to all this.
Stage 4 cancer didn’t just spread through Uzma’s liver. It spread through her and our life. We have supportive friends and family. But it was as if cancer threw a noose around our life and slowly but steadily kept tightening it. Our social and professional life constricted during treatment. We went out less often. We stopped going to conferences. One by one, we took our kids out of various activities. First soccer, then scouting, then Karate. The longer we lived with cancer, the narrower our focus became. Sometimes Uzma felt guilty about this — after all, it was her illness that was making us homebound. However, most of the time we both accepted it as a fact of life that we could not fight. It just had to be accepted. But the way I see it, this constriction is a cost of cancer that is at least as impactful as the price of treatment.
When checking in for every procedure and/or scan the check-in clerk offered us a written handout letting us know that if needed it, financial assistance options were available. Uzma and I often talked about this and wished that it wasn’t just left to the check-in clerks. It’s not easy for most people to admit to anyone, let alone impersonal administrative staff, that they need financial assistance.
Such conversations should be a recurring part of appoints with doctors and nurses in cancer treatment. We wished that oncologists and their clinical support staff would regularly inquire about the psychological well-being of patients with specific questions about jobs, kids, support, money. Patients spend hours tied to IV poles when they can be counseled. We wished they would give more attention to caregivers in the clinic appointments. Many cancer patients and their caregivers less fortunate than us would probably be helped by oncology staff taking greater than their clinical status. Perhaps someone could visit them and teach them how to become comfortable with asking for and receiving help. We didn’t become comfortable until Stage 4. None of this would eliminate the cost of Stage 4 cancer, but Uzma and I thought it would make it easier to bear. Just a little bit easier. But that may be enough for many people.
If we were to choose a Christian patron saint for ourselves, Uzma and I would probably select Saint Patrick, the “Apostle of Ireland” and not Saint Valentine. After all, it was on a celebration of St. Patrick’s day 21 years ago that we both took our chance on love. I asked her out. She accepted, although I was wearing a hideous green shirt that day and I had not made a good first impression a few months ago.
It was the beginning of an improbable love story. It wasn’t just that she was Muslim and I am Hindu. It was that she was born in Pakistan and me in India. It wasn’t just that she was born in Pakistan. She was born of parents who had migrated to Pakistan when the country was born and had witnessed, first hand, the horrors of partition. They had been persecuted by Hindus and Sikhs on their journey out. It wasn’t just that I was born in India. I belonged to the Kashmiri Pandit community that was ethnically cleansed out of its homeland by Pakistan-supported Muslim extremists.
Yet, in Chicago, where we met, we learned to see ourselves and each other as not just vessels carrying that history, but as individuals with our own independent identities. Influenced by our ancestry, but not beholden to it. Our separate stories made us stronger as a couple, even if our couple-hood was hard for some to accept.
Against many odds, we nurtured our love day after day, week after week, month after month, and year after year. Romeo and Juliet have nothing on us. Theirs wasn’t a love story. Theirs was a tale of infatuation, a crush. The narrative pace of that play belies the fact that Romeo saw and fell in love with Juliet on a Sunday evening and they were dead by the following Thursday — a mere 4 days later.
In both our countries of origin, there are extremists —primarily of the religious and cultural type, who hate Valentine’s Day. They think it is a corrupting western influence. They seem ignorant of the fact that every culture and subculture has its own poignant love story folk tale. How can saying yes to love be bad?
Though we owe more to St. Patrick, I say, “Folks, take a chance on love this Valentine’s Day and every day of the year.”
Is it easy? No.
Is it worth it? Absolutely!
And try not to be like Romeo and Juliet.
Letting all readers know that Uzma’s book is now available worldwide as a Kindle edition (ebook version of Amazon).
We can all read on the Kindle device and in the Kindle app of any smartphone.
And those who have purchased the paperback (that is, it was not a gift), can get the Kindle edition for 2.99 USD or comparable price on their local Amazon site.
About one and a half years before she died, Uzma started looking for an appointment with a palliative care physician close to home. She called a few different palliative care physicians’ offices. The conversations would always go the same way.
“Hi this is Uzma Yunus. I have stage 4 breast cancer. I want to make an appointment with Dr. ABC.”
“Have you been referred to hospice?”
“No, but I know that eventually that’s coming my way.”
“Mmm…I am not sure how to do this. Leave your information with us. We will call you back after speaking to the doctor.”
Uzma was an optimist. She continued cancer treatments almost an year longer than a part of her really wanted to because she thought, “There is a chance that the next treatment regimen might click for me. If that happens, my kids will have me around longer.”Uzma was also a realist like none other. She always tried and hoped for the best but knew, based on her review of the literature regarding stage 4 breast cancer, that she was unlikely to make it past this year.
It is really hard to be an optimist and a realist at the same time. It is even harder to be both and be one who plans ahead. Uzma had changed her cancer care from a nearby cancer center to Northwestern when her local oncologist had made treatment recommendations that were inconsistent with treatment guidelines. On most days, however, Northwestern was an hour drive away each way. She knew that ultimately she would need palliative care/hospice and decided she wanted her palliative care team to be local, not based an hour away.
So she started calling the local docs. The conversations always went the same way as above. No one ever called back. Then she got hold of her internist and asked her help in getting an appointment with a palliative care physician. This finally got her the appointment she was seeking.
The palliative care physician was surprised that she was seeing him while still in active treatment. Uzma saw this doctor 4-5 times in his office. When she was eventually referred to hospice by her Northwestern oncologist, she proudly said, “I already have a palliative care physician. I want to be referred to the hospice for which he works.”
When she began hospice it gave her comfort to already know the physician and I’m sure it helped the doctor to already know his patient.
[If you like this post, you may also like its companion post The Hospice Way To A Good Death]