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First Flight Without Uzma

As we settled into our seats on the plane, Gauri said, “Our family is sitting together for the first time.”

“What do you mean?” I asked.

“I mean Mama is not with us. So no one has to sit on the seat there.” She pointed sadly across the aisle.

We were in a plane with 3 seats on each side of the aisle, heading to Boston to visit a friend. It was a trip that Uzma and I had really wanted to make last summer, but never could make it work because of cancer.

Sometimes I felt guilty saying we couldn’t visit someone because of cancer. It’s not like we didn’t travel at all during Uzma’s last year. We took a trip during the kids’ spring break. We also went to Niagara Falls on the fifth anniversary of Uzma being diagnosed with cancer.

Originally, Uzma had planned to celebrate that milestone in New York City with a couple of breast cancer survivor friends. By the time the day drew near, she knew she wasn’t really feeling well enough to coordinate anything with friends. Less than a month before the Niagara trip we had found out that yet another treatment regimen had failed her. We ended up planning that break for the falls just 3-4 days before.

This is what I remind myself when I feel guilty about not visiting people who mean a lot to us in the last few years. Cancer, it’s treatment, and side-effects of treatments kept us from making any plans with friends and relatives. It felt easier to make last minute plans by ourselves.

When traveling on a plane with 3 seats on each side of the aisle, we had seen families of four split up a couple of different ways. Either they would sit two by two, usually in back to back rows. Or they would split up across the aisle. We preferred to sit in the same row. That meant one of us — Uzma or me — sat across the aisle from the rest of the family.

Now that it is just the three of us, our amputated family sits together. How will we manage traveling on a plane with only 2 seats on each side of the aisle? Will there be an argument about who gets to sit with whom? Deciding not to worry about that now, I started thinking about life without Uzma.

This was the first trip ever without Uzma. You could tell. I thought I had managed to get us all packed and ready on time. As we settled in on the plane, it dawned on me that I hadn’t taken anything to keep the kids busy. Uzma always used to make sure they had enough activities to stay occupied — books to read, books to color, sheaves of loose paper, pencils, coloring pens, and pastels. You name it, she would pack it. There was no chance of boredom. I had packed nothing. Zilch.

Fortunately, the plane had a screen for each seat. It had a decent selection of kids movies to choose from. That made the 2-hour flight really fly.

Not really though.

There was a stranger across the aisle.

Coming Soon: Video Event

Uzma had planned to do a Facebook Live event on December 9, 2018. It was to be the start of a virtual book tour. Alas, it wasn’t to be. Her gradually worsening health took a sudden and quick turn for the worse on December 4. She ran out of time.

In her honor, I plan to do what she couldn’t. But I can’t do a Facebook Live event. Not yet. Yes, I become nervous when I don’t know what I am getting myself into. Like most humans, I find being physically and emotionally there for my dying spouse less nerve-wracking than being in front of a live camera. So, I will do a recorded video and hope to upload it on April 9, four months after Uzma’s original planned date for the live event.

I will read something from Left Boob Gone Rogue: My Life With Breast Cancer. I will add some commentary. The screenshot (see below) of Uzma’s announcement about the planned December 9 event shows, she wanted to answer questions from her readers. Therefore, I intend to answer a couple of questions. But since this will be a recorded video, my request to you, her readers, is to write all the questions you would have wanted to ask her in the comments below this post. Of course, it won’t be the same as her answering them, but hopefully, it will work for you all.

 

Alcohol & Breast Cancer – A Link Worth A Spotlight

Most of us know about the cancer-risk of cigarettes but are utterly unaware of the cancer-risk or alcohol. Our liver converts all alcohol we drink, whether beer, wine or hard liquor, to acetaldehyde. Acetaldehyde is a chemical that is a known carcinogen (cancer-causing chemical) in humans. There is no controversy about this among scientists.

How much does alcohol contribute to the incidence of cancer in our society? Drinking alcohol increases the risk of cancers of mouth, throat, larynx (voice box), esophagus (food pipe), colon, rectum, liver, and breast.

Narrowing our focus to only breast cancer — what this blog is about — reveals that every year about 15% of breast cancer cases and deaths are attributed to alcohol. That’s about 35,000 new cases of breast cancer and about 6,000 deaths. As a comparison, between 5-10% of breast cancer cases are due to BRCA mutations.

This is why this study — A comparison of gender-linked population cancer risks between alcohol and tobacco: how many cigarettes are there in a bottle of wine? — is a useful one. It quantifies a little-known risk in terms of a well-known risk.

The study concludes that one bottle of wine per week is associated with an increased absolute lifetime risk of alcohol-related cancers in women, driven by breast cancer, equivalent to the increased absolute cancer risk associated with ten cigarettes per week.

One bottle of wine per week is associated with an increased absolute lifetime risk of alcohol-related cancers in women, driven by breast cancer, equivalent to the increased absolute cancer risk associated with ten cigarettes per week.

That’s okay for wine, but what about other kinds of alcohol?

To better understand and communicate the risks of different kinds of alcohol, addiction specialists convert all alcohol to “standard drinks.” One standard drink is the amount of any drink containing 14 grams of pure alcohol. A bottle of wine has 5 standard drinks. Doing basic math, this study is telling us that in terms of cancer risk in women, driven primarily by breast cancer, 1 standard drink is the same as 2 cigarettes.

1 standard drink is the same as 12 ounces of beer, 5 ounces of wine or 1.5 ounces of hard liquor.

So, how many cigarettes did you smoke this week?


Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 183 views on Amazon, each one of them a 5-star review. Her husband, Dheeraj Raina, MD, now maintains this blog. 

Lucky

It is impossible to avoid reflecting on my life with Uzma as I work on the book proposal for Left Boob Gone Rogue: My Life With Breast Cancer. Many years ago, my first and only proposal — not a book proposal — was when I asked Uzma to if she would marry me.

I was nervous. I couldn’t believe I was doing it. Not just popping the big question. But taking the risk to propose to a woman who was not just beautiful, smart and a go-getter, but whose national and faith background would make it an interesting journey should she say yes. Well, you’all know what happened.

I am a complete novice about the book business and have never written a book proposal before. This should be an easier done than that long-ago proposal. Because Uzma is by my side. I am not writing this alone. The book is already done. In print. Writing the proposal is hard because it needs to include a sort of a competitive analysis of other cancer memoirs. I have avoided reading cancer memoirs since Uzma got diagnosed in 2013. I felt no emotional need to read them while bearing witness to Uzma’s cancer journey.

So I finally read a couple. I was right to not read them before. Yet, strange as it feels to say this while steeped in sorrow and in a puddle of tears — I feel lucky!

Artists and poets are better at expressing emotions because they are better at listening to the emotions that we hide behind our words, faces and body language. Uzma, an artist and a poet, from whom none of my emotions, whether good, bad, or ugly, were hidden, loved me for the rest of her life. I feel lucky!

Social media is intuitively blamed for many ills. It is blamed for increasing isolation. It takes keeping up with the Joneses to quite another level. Uzma showed me, from up close, how social media can be for a force for good, helping us build new relationships and strengthen old ones. I feel lucky!

It’s not easy to be a Pakistani woman marrying an Indian man. It’s even harder to be a Muslim woman and choose an interfaith marriage. Uzma ignored the imagined boundaries of nations and faiths and loved me for the rest of her life. I feel lucky!

Living with stage 4 cancer is a nerve-wracking experience. Yet Uzma showed us how to do with humor, grace, and gratitude. And I had a front row seat to her show. I feel lucky!

At this moment in time, I don’t see how I will ever overcome the grief of her loss. She showed me how to love deeply even if it hurts. Such an incredibly smart, beautiful and loving woman accepted my proposal and chose me as the love of her life many years ago. Even in the depths of my sorrow, I feel lucky!

There are many challenges ahead. Raising resilient kids alone after such an ominous loss is the biggest one. But today, as I complete our — Uzma and mine — joint proposal and prepare to click ‘send,’ I feel lucky! And grateful. And hopeful. 


Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 181 reviews on Amazon, each one of them a 5-star review. Her husband, Dheeraj Raina, MD, now maintains this blog

 

 

More Reflections On Hospice Delayed

Reading the comments on the post about how hospice could have started earlier than it did for Uzma and why that was important, I find myself thinking more about our experience.

Why Patients Don’t Bring It Up

The first question that pops in my head is, how come both of us — Uzma and I —  being physicians, we didn’t think of hospice earlier? Why should it only be the oncologists’ responsibility? We were physicians. We have many physician friends, even friends who are oncologists. Uzma had acceptance of her mortality. She had pushed through to get a palliative care physician. Yet, we didn’t see it then, as I see it today. There are two reasons why bringing up hospice has to be the oncologists’ responsibility.

First, even the most unflinching-from-death patient has ambivalence about it. There are many unfinished projects. For Uzma, our young kids were an unfinished project like no other that contributed to us being in two minds. At one point in September, she said mournfully, “I have become completely worthless. I am only a burden now. I should just die.” How does a caring husband respond to this? I said, “I couldn’t disagree more. Your mere presence in this home is a blessing for the kids. See how the first thing they wanna do every day when they return from school is to sit with you?”

I look back at that interaction and realize how it could create pressure for a patient to keep going on. But I don’t think any family, while caught up in the struggle of terminal cancer, can avoid responding in some version of what I said. No family member is going to say at that moment, “You are right, you are just a burden. Let’s talk hospice!” The struggle between acceptance and denial played out in our minds every single waking moment of our lives since Uzma’s stage 4 diagnosis. Sometimes even our dreams were taken over by that struggle. It’s also not the responsibility of friends — even the friends who are oncologists — to bring up hospice in that circumstance. They were our friends, not our doctors. Their primary role is to support us, not to lay out treatment and end-of-treatment options.

The second reason has to do with the difference between what oncologists know and what patients and families don’t know. Based on my experience in my specialty, I suspect that seasoned oncologists know when a stage 4 cancer patient’s illness and treatment has reached a phase where the odds of recovery/remission with the next best option are too low. Patients and their families don’t have the same information. The oncologists also know — or should know — everything that hospice means.  I am a physician, and I knew hospice as comfort care, not a death sentence. However, until Uzma began hospice, I didn’t realize how much comfort hospice provides, how much life-draining activities it helps avoid. See The Hospice Way To A Good Death for a description.

A hospice nurse commenting on the blog post about hospice delayed says something that captures this:

…I see and hear this every day with my patients I care for in a hospice. And I hear repeatedly “If we would have only known the care we would receive and the focus on living out whatever time we have left with comfort and quality of life, we would have chosen hospice much sooner”

Oncologists Don’t Delay Hospice Purposely

Another comment, this one on a Facebook wall where  Price Of A Bad Metaphor was shared says:

…I worked with hospice for almost 20 years and clearly, most hospice patients come too late to reap the rewards of the care. Please tell me you don’t believe it’s because oncologists are making money on the suffering patients.

Actually no, I don’t believe that oncologists delay hospice purposely to make more money. It is true. Money can create unseen incentives. However, given the known shortage of oncologists, they don’t have to worry about growing their business. They are incredibly caring people. You couldn’t pay most of us enough money to take care of as many terminally ill patients as they do. Uzma’s oncologist was brilliant, kind, compassionate, with great bedside manner and Uzma and I hadn’t the slightest doubt about his expertise regarding treatment choices.

It’s not the profit motive, but the culture of modern America and modern American medicine that is to blame. We have become too enthralled by the technological aspects of modern medicine. Yes, modern medicine is doing amazing things every day. Read about Gleevec® and Sovaldi®, and you will see what I mean. Every truly revolutionary treatment creates hope the next new medication could be them — the next revolution. Most new treatments, whether for cancer or for any other condition, just aren’t revolutionary. They may prolong life by a few months, but that’s it. And, all of them come with serious side-effects.

Though vaccine-refusal and the opioid epidemic might yet change this, the dramatic decreases in mortality over the past 100 years means that all of us — and oncologists are also us — have become uncomfortable talking about death. Oh, we can speak of death in the abstract, alright. But we don’t know how to talk about it with people who are dying and who we care for in some way. We all need to get better at this, but oncologists, who treat so many dying patients, have a particular responsibility to get better at this.

Oncologists Are Not The Only Ones With The Bad Metaphors

Oncologists’ use of the chronic disease metaphor in terminal cancer sucks. As another individual wrote in a comment:

…My Oncologist repeatedly uses this comparison for my Multiple Myeloma diagnosis. Looking at the data avg survival is five years, and I am only 37. I think this is very confusing for my family as it makes them feel that this diagnosis has not significantly shortened my life.”

How terrible for this commenter. Oncologists need to stop using this metaphor.

However, as another commenter pointed out, they are not the only ones using a bad metaphor:

Also the battle metaphor. Not only because it seems to indicate that some didn’t fight hard enough, but also because that fight overshadows the good that can come with focusing energy on the things important to you.

And the people most responsible for the battle metaphor patients, families and advocates. Every battle has a winner and a loser. Stage 4 cancer, by its very definition, has a 100% probability of a foreshortened life. Nobody wants to be a loser. So, to the extent that one keeps buying into this metaphor, the death conversation is not likely to come up.


Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 181 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.

 

Hospice Delayed Is The Price Of A Bad Cancer Metaphor

Loss and grief inevitably make one look back, as if in the rear-view mirror of a car and wonder, “Is there something that could have been different?” Some of those backward glances are just about wishful thinking. Others are meaningful with lessons for all involved. Thinking about what Uzma would have wanted her readers to learn from her experience leads me to write this. I write not from a place of anger, but from a place of hope, where my sorrow can benefit someone else. I hope this reaches all oncologists.

Uzma The Fearless

It is December 2018. Both of us know what’s coming. But gloom descends on Uzma and me when she is referred to hospice. I call my parents to inform them. They are crying. My father recounts a conversation from the summer of 2016 when he and my mom were visiting us. He says, “It was just Uzma and me, sitting at your kitchen table.” I imagine the scene. I am upstairs, working from home. The two of them are sitting at the round table in one corner of the kitchen. The afternoon sun is filling our kitchen with natural light. Uzma and my dad are drinking masala tea.

She tells him, “I don’t know what you know about my illness, but my prognosis is not very good.” He tries to say to her not to talk ill about herself. And she interrupts him politely, “No, I am realistic. My cancer became stage 4 in February 2016. Looking at the data available about what I have, I am not likely to make it past February 2019. Any day after that month will be a bonus.”

Uzma expected honesty from everyone and almost brutal honesty from herself. Her social media posts are a testament to this. In March 2017, she wrote a very brief post on Facebook.
I am not sure whose quote it is, or whether she modified another quote to make it her own. But that is who she was. Like Dumbledore, always insisting that we must name what we fear most. Later in 2017, more than a year after that conversation with my father, in December 2017, she writes a post Prognosis: Three Years Average, that shows that 2019 is still very much on her mind. She talks in that article about being feeling ill-prepared, tired and yet hopeful. But always realistic. I always said she was an astute and skilled physician. She didn’t make it past January 2019.

Things Start Falling Apart

As I look back upon the final months of Uzma’s life, I think that despite her unflinching realism about her prognosis, she paid a heavy price for the tendency among oncologists to reassure stage 4 cancer patients by comparing it to a chronic disease. In medicine, the term “chronic disease,” usually means a condition such as diabetes, high blood pressure, and high cholesterol, conditions that are managed or controlled but not cured. It is ludicrous to compare stage 4 cancer to chronic disease. Half of the women with stage 4 breast cancer die within three years of diagnosis. Only one fifth make it past five years. I believe that using this inappropriate metaphor makes oncologists convey a false sense of hope and delays conversation about hospice.

Between February 2016 and June 2018, Uzma tried multiple medication regimens for her cancer, none except the first one working to keep the disease from progressing for more than 3-4 months. She knew where this was going. By late 2017 she had started seeing a palliative care physician of her own accord. By May 2018, her body starts to show the signs of breaking down under the onslaught of cancer and chemotherapy. Cancer is like a rebel army — it hides in this organ or that. Chemotherapy is like cannon-fire. Whether ultimately successful or not, it destroys a lot more than just cancer. The coveted status of NED or NE(A)D — No Evidence of Disease, or No Evidence of Active Disease — forever eludes Uzma.

Uzma develops significant neuropathy — her nerves are damaged. It causes tingling, numbness, and pain in the tips of her toes and fingers. The insensitivity of her fingers makes it impossible to continue making jewelry, something she enjoys doing with our daughter. Eventually, pencils, brushes and other art tools start slipping out of her hands, and she gives up all art. Her handwriting suffers. Abilities that bring her so much joy are suddenly no more.

In June 2018 she starts having falls. In July, while I am out of town, she falls in the early hours of the morning. She can’t get up by herself. She lies on the floor for a couple of hours until our son wakes up. He helps her get up. It is no longer just neuropathy, and she is also becoming weak. One more medication regimen has failed. She is given a break to help recover a bit from the neuropathy and the weakness before starting the next regimen.

Around that same time, we hear of an immunotherapy trial at the National Cancer Institute, which had worked for a woman with breast cancer in the liver and the rest of her body. She was given three months to live. With immunotherapy, she became NED.

We reach out to the doctor running the research study of that immunotherapy. We send him all the requested records and wait with bated breath for his decision. He calls back and says, “You do not qualify for this trial. The burden of cancer in your liver is so much that you could not tolerate this experimental treatment. If you were my wife, I would not put you in this trial.” We were disappointed. Uzma’s oncologist knows about this.

What Could Have Been

Hindsight is 20/20, but I believe that her otherwise brilliant, kind and compassionate oncologist failed her at this moment. And I think that using the stage 4 cancer to the chronic disease metaphor is what caused this failure. It is in July that conversation about hospice should have begun. I don’t think Uzma would have agreed to it then. But by August, her next chemotherapy regimen had caused her significant anemia requiring her to have three blood transfusions. That treatment too was stopped.

During her second blood transfusion, Uzma wearily says to me, “I think my body is finally giving out. I want to stop treatment. I am tired of living like this. We spend so much time coming to the clinic to get treatment. Then we coming again for treatment to deal with the side-effects of treatment.” She looks exhausted. I reply in the only way I know, “I know you feel that you have to keep going for my sake, for our kids’ sake. But I don’t want you to suffer anymore. You know your body best. If you decide to stop treatment, I just want to say, you don’t need to keep suffering to prove that you love us.”

Had the oncologist begun the hospice conversation in July, he might have said now, “I am sure you are frustrated that we have to give up on treatments far too quickly due to their side-effects. We had briefly discussed hospice in July. Have you given it more thought?”

In September her scans show a continued progression of her disease. She needs a cane to steady herself while walking. Stairs become a challenge. By October Uzma needed a walker. By November, we were regularly using a wheelchair to move about the hospital. Uzma, the unflinching realist, would most likely have chosen hospice in any of those 3 months if the discussion about hospice would have begun back them.

When hospice ultimately began, it was an immense boon. Had it commenced in July, Uzma would have avoided about 30 trips to downtown Chicago, each involving about 2 hours of roundtrip commute and about 6 hours spent at the hospital. She would have had two fewer CT scans, one less MRI and one less bone scan. She would have avoided about 25-30 needle pokes and three blood transfusions.

Had she turned to hospice in September, she would still have avoided 2-3 months of futile treatment and the hardships it was to bring without benefit. Some of those needle pokes, chemotherapy sessions, blood transfusions, and long commutes would have been avoided. She would have had avoided a lot of the fatigue that comes with such treatment. With the time and energy saved she might even have finished the portrait sketches of her kids that she wanted to complete. Maybe she would have finished writing the little notebooks for each of them in which she had begun writing personal messages for them. She might have done a book signing or two, or just taken more selfies!

Undoubtedly, experienced oncologists like Uzma’s know when a patient’s disease has entered a terminal phase. I believe the conversation about hospice needs to begin long before it enters that phase. Uzma’s oncologist had only one earnest conversation about hospice with Uzma — the day the decision was made to end active treatment. At that moment, Uzma’s liver could no longer bear the burden of cancer and its treatment. I believe it is the cruel use of the metaphor of chronic disease and the false hope that it creates for the treating physician that led to this outcome.

If oncologists can’t bring up hospice early enough even for fearless patients like Uzma, they have only themselves to blame if patients equate palliative care with a death sentence.

I am not saying that oncologists should not try to reassure patients and families. But they need greater awareness of the price paid by patients and families for using the chronic disease metaphor for stage 4 breast cancer. This metaphor probably lulls the patient and family into thinking the body can handle more than it can and delays the conversation about hospice. I hope that one day, the state of treatment for  Stage 4 breast cancer will be like diabetes, or even HIV, a once-dreaded infection; today over 80% of 20 year-olds diagnosed with HIV can expect to live past 44 years with treatment. But that day is not here yet for Stage 4 breast cancer. We should stop pretending otherwise.

Using The Metaphor Correctly

Dale Carnegie once said, “Any fool can criticize, condemn and complain – and most fools do.” So what would I have oncologists do? I think it is reasonable to say to the newly diagnosed Stage 4 breast cancer patient that, “We have many treatment options available for stage 4 breast cancer these days. We will begin with the treatment that is most likely to be effective while minimizing side-effects and gradually move towards treatments that have increasingly bothersome side-effects. We have no way of knowing ahead of time which treatment will work to stop your cancer from growing. But once it does stop growing, or goes into remission, our goal then would be to treat your cancer as a chronic disease like diabetes, to be controlled and managed indefinitely.” That’s the only proper way to use the chronic disease metaphor in stage 4 cancer — as a faint hope, not a current reality.

If the patient were to ask, “What if it never stops growing? What if it never goes into remission?”

The honest oncologist would respond, “That is still the more likely outcome, but if that were the course of your illness, we would want to balance the quality of life with its quantity. If remission were not your fate, what would be your biggest concerns about what you want to accomplish in the time you would have?”

It would be the start of an ongoing conversation about hospice and the patient’s values and desires.


Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 180 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.