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 Why I Keep Writing

[Commentary by Dheeraj Raina: This post is published under Uzma’s byline because it’s a previously unpublished post of hers. To read my approach to her unpublished work, read this. I know Uzma wanted to write a longer post about this. She was unable to complete putting many thoughts on paper because of the unpredictable ways in which cancer and its treatment interrupted life repeatedly. She started writing for herself. Over time, she heard how much her writing helped others. After learning that she never could ignore the obligation to write for the sake of others. That’s why she felt a great emotional need to complete her book before death came.]

From my inbox :

“Hi Uzma–

I want to introduce myself as a fellow warrior. I’m a physician and saw your blog thanks to a Facebook group yesterday. I read your Carpe Diem/Crappy Diem post and I have had the exact same musings. I am (age) yrs old and was diagnosed with stage 4 breast cancer last May. Initially, I was quite ill (liver mets). I have been back to work since September (was still in my initial chemo at the time) and am back in treatment (now near weekly chemo because things got worse in January). I’m feeling pretty great, all things considered. I have a husband and a young child.

Anyway, I wanted to say hello, and to let you know that I’m here working, alongside you and fighting. And actually, I’m fighting back tears after reading your blog posts, which contain many things I have thought about for the past year. Thanks for writing and making me feel not so alone as a doc and mom.”

We became friends. She is currently in hospice and the inevitable is looming and as I grieve I hold on to her words.

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Religious Platitudes For Cancer And Other Serious Illness

[Commentary by Dheeraj Raina: This was a Facebook post of Uzma’s. Read this to understand my approach to turning some of Uzma’s Facebook posts into blog posts.  I have edited this post’s formatting. Words I have added are in italics. Enjoy!]

* * *

This is what I hear over and over again.

I believe in prayers and miracles but these thoughts seem to have a pattern and classic content.

I hope for remission, I pray for recovery. But people do get better and some don’t.

Muslim platitudes for Illness:

1. When first sick

May Allah heal you, I will pray for you.

2. Illness prolonged

It’s not an illness , it’s a test. I will pray for you.

3. Still sick

Duas (prayers) change things. Keep praying.

4. Still quite sick

Shifa (healing) is in hands of Allah, keep asking.here are these things you should recite every day.

5.Still sick and worse.

Miracles happen all the time. I am praying for a miracle. Keep reciting what I sent you.

6. Patient suddenly better for one day

I told you never give up Hope , see how things change when you pray.

7. After 24 hours – Still sick, worse and may be terminal.

Death is inevitable. Whoever lives, will taste death.There is time to repent. Stay strong, keep faith .

8. Deathly ill

Now who can really interfere with Allah’s plans. He decides what is best. There is always a reason why prayers aren’t accepted. They wash away sins.

9. Died

We came from Him and shall return to Him. I will pray for the departed soul.

10. Someone else gets sick.

Rinse and repeat.

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A Note About Uzma’s Previously Unpublished Posts, Select FB Posts, And Articles Written On Other Sites

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 post on this blog, under her byline, those drafts that are complete enough to hold their own. I may add commentary or other notes and adjust formatting for the sake of clarity and more comfortable reading. But I will not otherwise edit her words. I didn’t edit her words when she was alive and won’t do it when she is gone. If you do add words in the main body of her unpublished work, I will indicate clearly which words are mine.

Sometimes I come across her blog posts on other sites or Facebook post that can stand on their own.  I will copy some of those selected writings into this blog to have a redundant mechanism of keeping them and finding them. When I do this, I will make keep any title she wrote for the post. I will create titles for her untitled posts when I put them on this blog. I will indicate the original date of the piece when I add it to Uzma’s blog. Though Uzma wrote only about breast cancer and related things on this blog, some of this material from other places will be about breast cancer, but this blog will allow all of it to be saved in one place. I hope, you, her readers, will be okay with that.

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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.

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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. That made the 2-hour flight really fly.

Not really, though.

There was a stranger across the aisle.

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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.

 

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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. 

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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 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 not to 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 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 it 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