A Note About Uzma’s Previously Unpublished Posts

Uzma was an astute observer of human emotions and behavior — her own and others’. Between her diagnosis of breast cancer in 2013 and her death in 2019, Uzma wrote prolifically. Her writing was incisive, irrespective of whether she was writing to inform, persuade, amuse or vent. She found the words to express what many of us could not. She shone a light on feelings that, but for those apt words and her willingness to say it as it is, would have remained hidden and unexamined.

As I am going through things she left us, I find writings that are clearly drafts that she meant to publish after working on them. They are in various stages of completion. I will publish on this blog, under her byline, those drafts that are complete enough to hold their own. I may add commentary or other notes for the sake of clarity and will indicate where I have done so. But I will not otherwise edit her words. I didn’t edit them when she was alive and won’t do it when she is gone.

Video Event Update

For those readers on Facebook, there will be Facebook Watch Party at 4 pm Chicago time today at the blog’s page Uzma’s Blog, Breast Cancer Experience. In a Facebook Watch Party, friends watch a recorded video together. I do a book reading and answer one question in the video. I will be there at the party to respond to other comments or questions. The video will be available both on Facebook and YouTube afterwards.

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.