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So, What’s New?

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.”

A Surgeon Breaks A Stereotype In 3 Minutes

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

Cost Of Cancer

My wife 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 $10,000 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. It was as if it had taken a break, paused to ponder how to beat whatever it was that we were throwing at it. 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 costs $10,000 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 chemotherapy infusions. Yes, with good insurance one only pays deductibles, copays and out-of-pocket maximums. Not everyone has good coverage. And even if you do, it all adds up very quickly. We met our deductibles and out-of-pocket maximums every year of Uzma’s cancer treatment. That’s a few thousand dollars every year that insurance did not cover.

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 regimen, 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 medicine after another 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 of 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 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 burden of illness. There are lost wages – for the patient, and 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 throughout her life, 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 talks 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 emotional 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 a greater interest in more than their superficial 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.

The Hospice Way To A Good Death

My wife Uzma died peacefully at home. She hadn’t taken any painkillers for three days. Our kids, my parents, and I were next to her. In the weeks leading up to her death, she was visited by many old friends. Many new friends, whom she had never met, sent her flowers, cards, food. It was a good death. Yes, for the last five years, cancer and its treatment took a physical and emotional toll. Yes, she left us a lot earlier than she deserved to go. Yes, the kids are young.

Nevertheless, it was a good death. There are few among us who wouldn’t want her end — pain-free, at home, with loved ones near. None of it would have been possible without hospice.

Uzma chose her palliative care physician long before hospice. While Palliative Medicine physicians are affiliated with hospice, they try to improve the quality of life of patients even before the patient ever needs hospice. When Uzma was referred to hospice, I knew what hospice meant — that now the focus would be on comfort care. But I didn’t quite understand then the incredible, warm, enveloping embrace it provides to the dying and their family. A referral to hospice is not a death sentence. The death sentence was the diagnosis of the liver metastases. As Uzma wrote previously, the prognosis of metastatic breast cancer is three years average. Hospice merely ensured a comfortable dignified dying process.

Every single hospice appointment was at home. The nurses who came 2-3 times a week. The doctor who came every couple of weeks. The physical therapist, the social worker, and the chaplain, all came home. They met Uzma in whichever room she was at the time. Though they had their professional tasks to complete, they met with Uzma for only as long as she wanted to.

But for going to the hospital for paracentesis — the procedure of draining the fluid that accumulates in one’s belly when the liver gives out — Uzma wouldn’t have had to leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put in a catheter in the belly, a tube through which the nurses showed me how to drain the fluid once a day, if necessary, to keep Uzma comfortable by keeping her belly from distending.

There were no unnecessary interventions. No lab tests whose results wouldn’t change treatment. No medications that wouldn’t provide comfort. One of the first things we received from hospice was a comfort medication kit to use to alleviate symptoms that can accompany dying. They included drugs to help with agitation, anxiety, pain, and respiratory secretions. No running to the pharmacy for medications, either. They were all delivered to home. The physical therapist who came home said his goal was to ensure safety and comfort. So he taught me how to help my wife get out in and out of bed, use the bathroom, sit around and ambulate in a manner that was safe and mechanically efficient, i.e., less tiring for her. As I said, no unnecessary interventions.

Had Uzma needed hospitalization for any reason — say, a condition unrelated to cancer that she would survive with treatment in the hospital — she would have bypassed the emergency room and would have been admitted to a bed reserved for hospice patients. Had I needed respite from caregiving, Uzma could be admitted to a hospice bed at a nursing home for up to five days. And the hospice staff would coordinate and arrange everything. We never had to use these options, but just knowing they were there gave comfort and peace of mind.

Two of the most emotionally essential services that hospice provided was a chaplain and a social worker specializing in counseling children about death and dying. The visits with the chaplain were among the longest Uzma had with any of the hospice professionals. The social worker provided some excellent tips about helping kids. Both the chaplain and the social worker provided incredible emotional support to Uzma and us.

Then there’s the equipment that hospice provides. We already had a cane, a walker, and a wheelchair. But if we didn’t have those, hospice would have provided one or all of those. Eventually, hospice provided a commode so Uzma could go without having to go to the bathroom. But the most important and most used thing that hospice provided was a hospital bed.

Uzma had decided long ago that when the time came for the hospital bed, it would go next to a large window in the living room that faces the front of the house. From our bedroom window, one can only see the back of other homes in our neighborhood, and they alleys separating them. In the front, there are trees. She could see people as they parked their cars and walked up to the house to visit her. Most importantly, she could see our daughters’ bus stop. And watch her board and exit her bus from where the hospital bed. That’s the main reason she had chosen that location for the hospital bed long before the bed came. The second most important reason was that she did not want to die in a bedroom, where people go to sleep. She wanted to die in a living room, where people live and meet.

Hospice was available 24/7 to consult about any difficulties Uzma was having. Those phone calls were always reassuring. When she died on the coldest night on record in Chicagoland, the hospice nurse came within an hour to examine and pronounce her dead. He also called the funeral home to notify them of the death. He gave us a heads up about our next steps that night with the funeral home.

Hospice didn’t stop all suffering. It didn’t stop the pain. But what it did for us was priceless. Without hospice, Uzma would not have died at peace, at home, without pain, and surrounded by family. She would not have died in the room where she wanted to die — our living room.


[If you liked this post, you might also like its companion post How A Doctor Chose Her Last Doctor. Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About 3 months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 178 reviews, all 5-star, on Amazon. This blog is now maintained by the author of this article, Dheeraj Raina.] 

Take A Chance On Love

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.

The Kindle Edition Of The Book Is Here!

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.

How A Doctor Chose Her Last Doctor

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]

Uzma Did Not “Lose” Her Battle With Cancer

The tributes and the reminiscences have continued to pour in since Uzma breathed her last over a week ago. I have also seen some people write about her on their own social media pages. All of them speak of Uzma in glowing terms. However, some of them say, “Uzma lost her battle with cancer” or something along those lines.

Uzma would have hated, and I hate that description.

Uzma would have said — It is unfair to cancer patients and their families to describe the outcome of their cancer journey as winning or losing. The disease can be such that one can survive and thrive for years after only one bout of treatment. Or it can be relentless and overwhelming, and fail to respond to treatment after treatment. The only choice those with cancer have is whether to embrace their illness, connect with others and live their life fully irrespective of its length. That’s it.

As she says in her book, “That’s how you rock it (cancer). You talk to others, you connect with survivors, and you keep your head high. You make friends with fear. You learn that uncertainty is cancer’s middle name. You stay grateful even in the darkest days. You dress up for chemo. You sport fashionable headgear. You fall and get up again and again and again.”

Uzma did not lose her battle with cancer. Her cancer died with her. But while they were both alive, it was a no contest. Uzma lived the life she wanted to live — without cancer and with it..

Final Farewell

Uzma was laid to rest on February 3, 2019 in ceremony attended by close and extended family, old friends, new friends, former coworkers and many people who had never met Uzma but only knew her through her writing. Everyone who loved Uzma, everyone who attended the services, and especially everyone who gave a eulogy made her final services serene and beautiful. Thank you.

Uzma was laid to rest following Muslim tradition because she was born a Muslim. However, she in her life and death she transcended all divides, whether of faith, creed or national origin.

The following text is from the concluding paragraphs of my prepared remarks for her eulogy:

“My Uzma wrote and through her writing touched many lives around the world. Her blog has been read by 300,000 readers in 170 countries. What draws people to her blog and now to her book is not just her simple, unpretentious way with words, but also the way the writing conveys her acceptance of uncertainty and fearlessness in the face of the death. When her cancer recurred and became stage 4, she knew that it would take her. She started to take more of life in, love more deeply, play with more abandon and give of herself more freely. When people reached out to her after reading her blog, she took time to speak to them and sometimes counsel and coach them as a friend. I knew this, but I didn’t know the extent of it until she died and people from around the country and around the world started messaging me saying how she had helped them through 1:1 interaction. And that tells me that she is no longer just mine. Through her writing my Uzma became your Uzma, our Uzma, the world’s Uzma.

David Eagleman, in the book Sum: Forty Tales from the Afterlives says, “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.” Uzma died 4 days ago. Today we consign her to her second death and mourn again. But I am confident that through her writing and by becoming the world’s Uzma, the third death will be a long time coming, perhaps even after most of us gathered here today are long gone. Therefore, I say, let’s continue to celebrate our Uzma after we have mourned her today.”

In Memoriam

Uzma Yunus, MD, the creator of this blog and my beloved wife of 17 years, breathed her last on Wednesday, January 30, 2019. She was laid to rest on February 3, 2019 at Memorial Park Cemetery following a wake and memorial service made beautiful by the love of friends, family members and many fans of her writing who attended.

Uzma wanted this blog to continue and had added me, her husband, Dheeraj Raina, MD as an admin/author. It will take some time to figure out how this blog will be continued. In the meantime, please order, read, review and recommend her book Left Boob Gone Rogue, published a couple of months ago and available on Amazon.

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