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On Thoughtful Giving For Breast Cancer

My wife Uzma died of breast cancer eight months ago. It was stage 4 breast cancer, also known as metastatic breast cancer (MBC), that took her.

According to the latest data from the American Cancer Society, over 250,000 American women will be diagnosed with breast cancer in 2019, and over 40,000 will be diagnosed with MBC. Less than 10% of women with breast cancer have MBC at initial diagnosis, but eventually up to a third of women with early-stage breast cancer will go on to have MBC. 100% of deaths due to breast cancer are due to MBC. And almost all women with MBC will die of MBC.

Normally functioning cells in our body have two key features: First, they don’t keep reproducing (make copies of themselves) indefinitely. Second, they stick to their own kind. Liver cells stick to the liver. Lung cells remain in the lung. Breast cells remain in the breast. And so on.

Cancer happens when a genetic glitch in a cell removes the restraint on reproduction. One cell begins reproducing without paying any heed to the need for more clones of itself — reproducing without restriction results in the growth of a tumor.  Cancer becomes stage 4 when another genetic glitch causes cancer cells to lose the stickiness to their own kind. It’s as if they have become adventurous, straying far and away from their native organs. Cells from the breast, for instance, think nothing of making a home in the liver. Cells from the kidney may decide to dwell in the lungs.

Most cancer research aims to stop cells from reproducing without limits. Relatively little goes towards preventing cells from losing their stickiness. Most stage 4 cancer patients, including MBC patients, receive one trial after another of chemotherapy drugs developed to prevent tumors from growing in size,

Less than 5% of the national research funding goes to MBC. Let that sink in. Almost one-third of women with early-stage breast cancer go on to have MBC. All breast cancer deaths are due to MBC.  But less than 5% of research funding goes to figuring out how to stop cancer from spreading and from killing our mothers, daughters, sisters, and wives.

Awareness campaigns are everywhere during October — Breast Cancer Awareness Month. Pink ribbons are on a range of products. Pink banners are in a host of stores. The message everywhere is, “Do your mammograms!” There is not the same volume or intensity to the message that one in five screening mammograms are false negatives, i.e., they fail to detect cancer. Younger women and those with dense breasts are at higher risk of false-negative mammograms. Uzma was one of those women. She had several annual negative mammograms, the last one of which was about three weeks before she found a lymph node in her armpit.

The other message that doesn’t get highlighted during Pinktober is that almost one-third of women whose cancer is detected by mammograms will go on have stage 4 breast cancer. And that right now we don’t know how to stop that.

As we open our wallets this month to give to charities that fight breast cancer, let’s give some thought to whether our money flows consistent with our values and preferences. Different organizations see their missions differently and spend accordingly. Before donating, it is not a bad idea to check out an overview of the charity at Charity Navigator. I compiled the tables below from data easily available on that website.

Program Expense Distribution of Selected Breast Cancer Charities*

Metavivor, a relatively new charity, is not as big as the other two in the tables above. However, its program spending is growing the most rapidly. And its spending is exclusively focused on MBC. Metavivor believes that 30% of funds given to breast cancer organizations should be dedicated to MBC. Remarkably, of the three charities, it spends the least amount of money to raise more money — less than a penny to raise every dollar. BCRF, while not exclusively focused on MBC, spends 100% of its program funds on research. Its administrative expense, as a percentage of its budget, is the lowest of the three charities above. It spends eight cents to raise every dollar. In 2017, Uzma modeled for an Ulta Beauty campaign to raise money for BCRF.

Komen, which needs no introduction, is a fundraising juggernaut. Of the three charities above, it spends the highest proportion of its budget on administration. It also spends a lot of money to raise more money — 14 cents to raise every dollar. Fundraising expenses are 12.5% of its total spending; they are 8.7% and 1.1% of expenditures at BCRF and Metavivor, respectively. Of the three organizations, as a percentage of program expenses, Komen spends the least on research. Charity Navigator gives a Charity Navigator Score to all charities based on a combination of financial and accountability & transparency measures. Komen’s score is the lowest of the three charities.

Is one of these three charities more worthy of our money than the others? That’s for each of us to decide based on what is most important to us. Is it more important to us that all of our money goes to research? Do we want more of our hard-earned cash to go towards making more women aware of the importance of screening? Or do we prefer that more of it go to research.? Do we want it to go research focused on stage 4? Do we care how much our cash a charity uses for administration and fundraising?

The answers to each of these questions may well be different for each of us. We don’t need to limit ourselves to the three charities in the table above. A search on Charity Navigator will reveal other charities specific to any other cause dear to any of us. All we need to do is to make sure we review that information and give our money to the charities that most match our values and preferences.

 

 

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A Cancer Widower’s Call To A Newly Diagnosed Friend

Running Into Worry

While standing in the ordering line of a locally famous ice cream shop, I ran into an acquaintance. She pulls me aside and whispers, “I have bad news.” Her face has lost all color. My first thought is that it must be about her parents. Like my parents, they are at an age at which lousy news would shock only the immediate family. Everyone else would say platitudes like, “She had a full life,” or “He got to see all his kids settled.” But this isn’t about her parents. “I just got diagnosed with breast cancer,” she clarifies.

“I am so sorry,” I say while attempting to comfort her. My life with Uzma, from first meeting her, making good memories and not so good ones, and to her death from cancer flashes before my eyes in an instant. The terrified woman says, “All I can think of is Uzma.” Her son and husband, standing a step or two behind her look frozen. All I can say there is that I am sorry for what she is going through. Observing that the noisy ice cream shop was not the right place to have this conversation, I take her number down and promise to talk to her another time.

What can a person in my shoes say to a person in her shoes? Cancer took my wife. One of the world’s top breast cancer specialists treated her at a premier university hospital. Uzma was one of the best patients a doctor could ask for — well-informed, asking many questions, but then taking every dose of every medicine prescribed unless the doctors told her to hold it. She added complementary approaches to standard treatment to improve her life. She practiced gratitude and a positive attitude. Still, she died. What meaningful thing can I say to any woman newly diagnosed with breast cancer?

Platitudes Don’t Give Hope

My first instinct is to say something that gives hope. But I remember how hollow and empty comments such as “everything will be alright” used to sound when Uzma was first diagnosed with cancer. “How do they know when even our doctors don’t know?” Uzma and I would ask each other. Everything may be alright in the long run. Ultimately no one is indispensable. Eventually, people learn to live without loved ones who die. But that’s not the goal of the people doling out hollow reassurance. They are trying to instill hope in the near-term. Towards that end, such comments were a big miss with us.

When the shock of those three words, “You have cancer” hits, it feels as if the very ground under the entire family’s feet has vanished. A free-fall begins — scenes from one’s past whiz by with a feeling of unreality. Visions of alternate futures appear and disappear with a sense of immense sadness. You realize that some of those futures will never be. Sometimes, it feels as if the falling will never end. At that stage, everything seems surreal. All because of three words.

How can any hollow platitude give real hope at that time? Some people have a hunch that this might be the case. They try to give their superficially hopeful statements a shot in the arm by first trying to learn more about the victim’s cancer, their diagnosis, and treatment. They pepper the patient or her family with questions — what, where, when, why, and how? It usually backfires. No matter how much detail we learn about how the person found their cancer, what the test results show and what the doctor said, none of it changes the fact that uncertainty haunts the home and the mind of the newly diagnosed.

The Phone Call

I prepare for my phone call by practicing saying this, “Cancer sucks! I am sorry you have to deal with this. There is nothing I can say or do that will make you feel less nervous right now. But I do want you to know that Uzma’s cancer story is only one type of breast cancer story out. There are others out there, in many of which recurrence does not follow remission. No one can tell you today whether or not your cancer journey will ape hers. The best thing you can do for yourself right now is to make sure you have the right doctors on your side — doctors who are right because of their competence and because you trust them. Then let them guide you. Let me know if there’s anything I can do to help you on that front.”

I know before the phone call that this will be a dialogue, not my monologue. But practicing what I wanted to say ensured that I told everything I wanted to say. More importantly, it will lower the odds of anxiety making me blurt out something insensitive. I make the call. I don’t ask a single question about the diagnostic process, the treatment recommended, the test results, and all the other information to which I had no right. She shares some of this information on her own.

That part of the conversation is followed by the only question I want to her, “How are you sleeping?” She tells me she is having a hard time since the diagnosis. I recall our days after Uzma’s diagnosis. I remember Uzma deciding, after a couple of weeks of poor sleep, that she couldn’t afford to go on like that. She told her doctor, “I need rest. I have a lot of information to absorb right now, a lot of challenging decisions to make. I can’t do myself any favors by being sleep-deprived and tired all the time. Can you give me something to help me sleep?” I share this memory with our friend and urge her to consider doing the same. She replies, “I hadn’t thought of that, but it makes sense.”

Calling The Husband

Later that day, I call her husband. The first part of that conversation is similar to the first part of the conversation with his wife. I empathize with the burden placed on their lives by cancer and the uncertainty accompanying it. I ask him if he would let me give some unsolicited advice. When he approves, I say, “This is a time when you will need all the help you can get. For a variety of reasons, most of us find it easier to help others than to ask help for ourselves. But this is a time when asking for help is the thing to do. There is no shame in it.”

I also suggest that they consider getting as much paid help as they reasonably afford. Paid help can provide predictable daily support to do things that need doing every day. Even if one is wholly preoccupied with cancer and its treatment, the dishes and clothes still need cleaning. At this moment some or all of the money one spends on vacations and entertainment is better diverted to getting paid help.

I share with him that it was not easy for us to make the shift. It’s easier to give than receive help because receiving makes us feel exposed and vulnerable. Especially when dealing with a serious illness like cancer, we also know that we may never be able to return the favor. All we may be able to do is express heartfelt gratitude. And that’s okay. We eventually grasped that even if we can’t return the favors received, we can pay it forward by helping others in our shoes.

I want to say a lot more to both of them. Ignore the avalanche of bullshit dietary advice about to head in your way, I want to say. I want to tell them about the people who will vanish from their lives during their most challenging time. And tell them of the strangers who will step up to help. There’s much, much more. But I decide against it. Just because I want to tell them all this doesn’t mean it it is the right time for them to hear it.

As I end the conversation, I find myself wishing that her cancer responds so well to treatment that she and her family will eventually look back at this time as nothing more than a bad dream.

Post-script

I don’t know if this was the best way to handle this. I used what I have learned from Uzma’s and our family’s cancer journey. There were three most important lessons that I learned about those early days of the cancer journey.  First, no matter what anyone says, the hand early days (and often later ones too) are days deep uncertainty. Second, early on, cancer patients are often tired of sharing their stories repeatedly with different healthcare professionals and family members. Sharing them with yet another person with whom sharing is not essential is not something they relish. Third, exposing one’s vulnerability by asking for help is hard but necessary to navigating cancer.

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The Mixed Feelings Book Sale

Even before her own breast cancer diagnosis, my wife Uzma began having mixed feelings about Breast Cancer Awareness Month. Those feelings got even more mixed once her cancer came back and became stage 4. “I don’t mind the fundraising,” she explained, “But I sort of think that much more needs to be spent on funding research into treatment than we are doing now.”

She agreed that awareness campaigns are important to keep educating women about the importance of screening mammograms. According to the CDC, more than one-third of women over the age of 40 report not having a mammogram in the past two years. The message of journal articles like this one, published after Uzma’s death, must be summarized in simple language for all women. Women with dense breasts need education on the poor value of mammogram screening for them. Some women need sensitive education to help them overcome their anxious avoidance of breast cancer screening.

In 2011, two years before her cancer diagnosis, Uzma discovered that the charity then known as Susan G. Komen for the Cure was only spending 15% of its program funds on breast cancer research. Since then the charity has dropped the phrase “for the Cure” from its name. However, the non-profit and its affiliates still host hundreds of “Race for the Cure” events every year. Komen has since increased its funding on research to almost 29% of its program funds. Uzma believed that as the 800-lb giant in the breast cancer charity universe, Komen has a responsibility to spend much, much more to fund treatment research.

Since then we found other organizations, smaller than Komen, that spend a greater part of their program expenses on research. Breast Cancer Research Foundation spend 100% of its program funds on research. Metavivor, a much smaller charity, spends almost 90% of its program funds on research focused on stage 4 breast cancer. Komen’s size gives it an outsize impact. For that reason alone, it remains an organization worthy of our support. But those of us who want more of our support to go towards research must explore other options.

Those who want to keep funding advocacy and education ought to consider how to make those activities more focused. For example, research studies since at least the 1990s show that mammograms are falsely negative twice as often in dense breasts compared to less dense ones. Negative mammograms will give a false sense of security to some women with dense breasts. Focusing at least some of the awareness funding on the issue of dense breasts is worth considering.

As October approaches, I ask myself, “Uzma wrote a book to help people gain a visceral understanding of the breast cancer experience. What would she do with her book if she were still around?” I think she would make people ponder how to channel their donations according to their interests — awareness vs. research. She would reduce the price of the book for breast cancer awareness month. She would urge everyone who buys it during this time to donate the money they save to their favorite breast cancer cause.

So here it is: Both the paperback and Kindle versions will sell at a reduced price through October. I am calling it the Mixed Feelings Book Sale partly because of Uzma’s mixed feelings about October. And partly because of my mixed feelings about helping get her book out without her on my side.

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The Hardest Thing About Grief

If you were my patient, and you were grieving, I would comfort you. Most of the time, I would know the words to say and the ones to skip. I would help you think about loss, grief, and life in a way that would spur you to action. I would help you fit your thoughts and feelings differently than when you came to me. Hopefully, this would help you live better with your grief. I would say to you, “I don’t want to make you forget about your loved one. I hope to help you live better with their memory.”

Accepting the loss of a loved one is the first task of grieving. For weeks after Uzma died, I wanted to see her when I turned around the various corners in our house. I waited to hear her voice. It still feels off not to have her next to me in the car, on a plane, on road-trips, and vacations. I am often half-lost without her as my problem-solving partner. All this still happens. But time dims its frequency and pain. Repetition is the mother of learning, they say. When reality keeps dashing the hope of a loved one’s presence, the heart eventually gets it. It accepts the permanence of loss.

Adjusting to life without the loved one — another task that every bereaved person must eventually master — is a bit harder. Accepting the reality and finality of loss does not make this easy. Uzma and I were equal partners in life. But even equal partners split the tasks of life in unequal ways. Their differing interests, skill, and circumstance decide where the line gets drawn.

Uzma worked part-time since our oldest was born. But that was outside the house. Inside, she was the engine behind our family’s social calendar, the kids’ extracurricular activities, and most of the day-to-day planning and organizing of our life. I helped with all of them, but she was the wizard who made it all work. Adjusting to life without her means figuring out how the trick works after the magician s gone. Someday I will get the whole illusion, but today isn’t that day.

A surviving parent must also adjust to life by taking on the sole responsibility of helping children grow up adequately adjusted. They must grow up reasonably content. Capable of love. Practiced at enjoying life. There’s one plus to being the only parent. One doesn’t need to check every new thing about the kids with the other parent. But there’s a significant downside. One doesn’t have anyone equally invested in the same kids with whom one can when one wants, discuss every new thing about the kids.

It could be something as simple as figuring out the right age for each child to have her first mobile phone. One must decide upon the best way of teaching her to be on time, to be a good judge of character, to consume media critically, to manage money properly, and a million other things. Usually, parents complement each other in small and big challenges like these. Each fills the gaps in the parenting temperament and skill of the other parent. While self-aware parents are always trying to improve on this, the loss of one’s parenting partner makes all this harder. Having said all that, young kids at home do force one to move on with the first two tasks of grieving.

Failing to navigate grief properly is risky. One must give grief its due, but no more. Otherwise, one gets stuck with what counselors call “complicated grief.” Complicated grief is grief possessing the survivor in a way that she has a hard time returning to normal life. She becomes too focused on what reminds her of the dead. Or just as obsessively tries to avoid anything that reminds her of her loss. She pines so hard for who and what she has lost that she becomes detached from the living.

She wishes she had died with the one she loved. She is consumed by sadness. Not just in the immediate aftermath of her loss, but months and years later. About seven percent of the bereaved end up with complicated grief.  Though no one is immune, being a woman, being older, having a lower income, and losing a child or a spouse, especially to cancer, all these increases the risk of complicated grief.

For most of us, the passage of time makes the most of the work of grieving easier. However, there’s one part of navigating grief that seems to get harder with each passing day. It is the hardest part of grieving — keeping a connection with the dead while moving on with life. This task overlaps with everything else one does, whether adjusting to life again or accepting the finality of loss. Every social visit, road trip, vacation, everything one does to have fun, every step, and every breath to tackle life anew risks blurring the memory of the loved one. Meeting this challenge is critical to avoiding complicated grief. This, the thing that appears to get harder with time is the hardest thing about grieving. I hear me saying to myself, “I don’t hope to make you forget about Uzma. I hope to help you live better with her memory.”

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Does Modern Life Cause Cancer?

Every day we hear of a friend, or a friend of a friend, or some celebrity getting cancer. We are positive that we didn’t hear about so many people getting cancer 25 years ago when we were young. Surely there must be something wrong with modern life that this disease afflicts so many of us today. Those looking to blame modernity for this usually find the culprits in pollution, plastics, and processed food. And chemicals. And don’t forget kale, or rather too little of it.

I vaguely remember a textbook of pathology that I last read in medical school saying, and I paraphrase — “the biggest risk factor for death is life.” The more years we are alive, the more likely we are to die. Life expectancy at age 75 is much lower than life expectancy at age 10. Accidents and injuries tend to get us young. But most other causes of death are likely to get the older among us. What is true of most causes of death is true of cancer too.

Highlighting the relationship between age and death is not just me being cute. It’s essential in the context of cancer. American Cancer Society tells us that 87% of all cancer cases occur in individuals 50 years or older. Why? Each day that we are alive, our DNA has a small chance of mutating. Some of those mutations cause cancer. The risk may be minuscule each day, but over time it adds up. An article from the American Journal of Preventive Medicine tells us how our risk of getting cancer increases with age.

age-link-cancer

Uzma was not one of the 87 percent. Her diagnosis and death came before she turned 50 years old. That still doesn’t change what the data tells us about the link between age and cancer for the majority of us.

As an interesting aside, the table above tells us that or risk of dying from cancer is about one in five across most age groups. But after age 60 those odds start falling. That’s because, as we get older, a greater number of chronic diseases — heart disease, kidney disease, consequences of over-consumption of food, alcohol or drugs — start competing with cancer to kill us.

The longer more of us live, more of us will get cancer. This relationship is vital to keep in mind when looking at the link between cancer and modern life. Let’s take a look at world life expectancy.

world-life-expectancy

It is only in the past 50-100 years that people started living past the age of 50 years, the cutoff after which almost 90% of all cancers are diagnosed.

So, it’s true, we are hearing of more people being diagnosed with cancer than our grandparents did. But it’s mainly because more people are living longer. Yes, there is evidence of all other sorts of risk factors. Smoking, alcohol, and obesity carry cancer risk. As do sunlight, air travel, and certain chemicals. And managing those risk factors will lower the odds of getting cancer.

But the number one risk factor for cancer is age. Is a non-modifiable risk factor — that is, we can’t do anything to stop that we age. And that simple fact leads to only one lesson — each day that we are alive, we must truly live.

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Kindle Edition Of Uzma’s Book Is On Sale.

If you like ebooks, this might be the month to buy Uzma’s book when it’s deeply discounted on all Amazon sites (US and international).

If you have friends who like ebooks this might be the month to recommend it to them.

Did you know that you don’t need a Kindle device to read a Kindle book?
You can read it on the Kindle app for iPhone (or iPad) and Android.

Note however that on iPhone and iPad you can only purchase the kindle edition by going to Amazon through your browser (Safari). Once purchased, it downloads automatically to the Kindle app.

This discount only applies to the Kindle edition and is only for this month.

Help spread the word!

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Random Thoughts About Planning A Funeral

I planned my first funeral a few months ago. I am talking about my wife Uzma’s funeral. She died on January 30, 2019.

Uzma had cancer. When her doctors couldn’t stop cancer from having Uzma, they referred her to hospice. It was about 6 weeks before she died. That’s when we began funeral planning in earnest. Once her cancer came back we knew that it would take her before we could grow old together. Still, we hadn’t thought about funeral planning until Uzma’s father’s funeral. All Uzma knew before then was that she wanted Memorial Park Cemetery in Skokie to be her last resting place. It is a non-denominational cemetery. And Uzma would joke, “If I become a ghost, I want to be able to easily haunt Old Orchard Mall.” One of her favorite malls is across from that cemetery.

Funerals back home on the Indian subcontinent are usually hasty affairs. There are no funeral homes. Wakes are held in the deceased’s home. There’s no cold storage. No one embalms the body. Some families wait for key relatives to arrive from out-of-town, but most perform the last rites are performed within a day or two of death. No cold storage and no embalming dictates that timeline. Climate defines traditions.

Traditions are not immutable laws of physics. But many immigrants who have lived in the west for decades treat them as such. We don’t give much thought to the idea that while the dead are on display, funerals are meant for the living. No matter what faith tradition the deceased belonged to, her life is over. All the good she was meant to do is done. She has earned all her promised reward, whether a place in heaven or a better next life. Her outcome won’t change whether her last rites are in one day or seven.

On the other hand, it does have a bearing on all those who loved her and are left behind. For them, the funeral is an opportunity to say their last goodbyes, to celebrate a life well-lived, and to mourn the possibilities that died with their loved one. It is an essential stop on their journey of grief. In today’s world, when so many who love each other tend to live so far apart, it would be better if the funeral rites were completed when everyone who wanted to be there got there.

Uzma’s father, suffering from advanced lung disease, died in January 2018. Uzma was by his side when he took his final breath. The kids and I were by her side an hour later. His was a hasty funeral. He was taken to a Muslim funeral home where the close family got to see him again before he was buried. There was no wake open to all friends and relatives. Until almost the last moment, we didn’t know precisely when he would be buried. At the graveside, Uzma was shocked and distressed to see how disorganized everything seemed. A front end loader was used as a crane to lower her father’s burial vault into the grave, which was then covered with large chunks of frozen ground. None of it felt right.

She would later say that it felt that in that funeral, there was no respect for the dead or the living. And that’s when she decided that she would have a Muslim funeral but not in a Muslim funeral home. “I don’t want to buried in a hurry,” She said, adding, “I want everyone who wants to come to have a chance to come.” She wanted everyone to know exactly when to come to the funeral home and exactly when she would be buried.

Looking back, I think we should all plan our funerals when we are healthy. Pick the funeral home, the flowers, the casket, the agenda. The whole shebang. Once we are terminally ill, starting the planning then, whether for a funeral or estate planning, becomes too emotionally challenging — for our loved ones and us. Even beginning such discussions at that point makes it seem like giving up all hope and pulling the plug. That’s even though Uzma knew what kind of funeral she wanted, we put off planning it until December.

On the first day of hospice, she said to me, “Help me make funeral arrangments. You know what I want. Do the legwork. But I want to make the final decisions.” It’s not easy for anyone to make their own or their beloved’s funeral arrangements. Hard as beginning funeral planning is after diagnosis of a terminal illness, it is even harder when you can practically hear death’s knock on the door.

Suburban living in America means we all drive past funeral homes multiple times a year, if more frequently. But we don’t really start scoping them out or even remember their names. Not knowing which funeral home to begin with, I started the planning with the non-denominational cemetery across the street from one of her favorite malls.

Uzma was very weak by this time. Getting out of the house, getting in the car, getting out of the vehicle, things we usually do without giving any thought, all required planning, and a great deal of help. However, she wanted to make the final decision. After I got some basic information over the phone, we drove to the cemetery. She picked the specific plot of land to hold her forever. It was next to a towering weeping willow. She had long said she wanted to be buried next to a tree

Learning that Uzma was a Muslim, Tom at the cemetery suggested we contact Justyne Scott at N.H. Scott & Hanekamp Funeral Home. “She works closely with an Imam and has experience doing Muslim funerals,” he explained. I called Justyne the next day. Indeed she did work closely with the Imam from a mosque in Northbrook. Fortunately, Uzma considered that mosque, affiliated with the Islamic Cultural Center of Greater Chicago in Northbrook as her home mosque. That is the mosque she most liked to visit for prayers.

Justyne met with both of us. Justyne had the best demeanor I could have hoped for in a funeral director. She always appeared professional without being stiflingly formal. Moving deliberately, she looked neither in haste nor lackadaisical. She had a calm, reassuring voice that was neither louder nor softer than necessary. No question ruffled her; no request flustered her. She gave us good advice about things we hadn’t thought about.

Justyne explained to us which arrangements such as caskets and flowers that Muslim families usually chose as well as the unique arrangements the Imam was okay with. She even up followed up with the Imam regarding questions we had. She explained how the funeral home arranged for the ritual washing of the body that Muslims do before the funeral. Uzma and I repeatedly wept through these discussions. Justyne responded in a way that a good therapist would — tissues at hand, never speaking more than necessary and never saying anything inappropriate to the moment. Uzma decided who should wash her body and which casket should hold her.

Wanting everyone who wanted to attend to have the opportunity to participate in, Uzma had me ask the Imam his views on embalming. The Imam said he didn’t know, but he would research and get back to me.  A few days later, he told me that he wished we won’t do it, but there is no scriptural prohibition against it. He added, “If you do go for embalming, I will still do my job — which is to lead the funeral prayers for your wife.” Justyne told us she would delay the embalming for as long as she could. Eventually, it was not necessary. Uzma passed away on a Wednesday night. We buried her four days later. Everyone we knew wanted to be there was there.

Uzma passed away late in the evening. The staff member from N.H. Scott & Hanekamp, who came to pick Uzma’s body up from our home at 2 am first met with me and explained what he would be doing. He was respectful, thoughtful, and deliberate. He also had an appearance and demeanor like Justyne’s – just right for the context and occasion. Whether it is because of the training N.H. Scott gives their staff, or whether it is because they select people who are already this way, I don’t know, but it made things bearable during such a difficult time.

On the day of the funeral, everything happened as planned. Justyne and other funeral home staff were unobtrusive but never hard to find and never unhelpful. There was a room where we had the wake, the eulogies, and prayers. And they also made another room available to us. They let us keep cookies and coffee in the is second room. The atmosphere there was less somber. It was a lifesaver, keeping our young kids and their friends from becoming disengaged.

When the Iman was ready to lead the funeral prayers, Justyne and her colleagues knew exactly where and how much space to create for the Muslim attendees to pray. They just made everything run smoothly and in a manner that would have pleased Uzma. There was nothing slapdash, hasty, or haphazard about it.

It got me thinking, what makes a good funeral home director. First and foremost, like a good therapist, she must listen and comfort well. She must be familiar with the faith traditions of her customers. As the director of the last act in which the deceased plays a part, she must make the different moving parts of a funeral work together without becoming too visible. Justyne was all that, and then some.

More than half a year has passed since Uzma is gone. I feel half-ready to make a decision that Uzma deliberately left to me — choosing her gravestone and epitaph.

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There Is No Shame In Loss

I loved the movie O’Brother Where Art Thou. There are a couple of related scenes from that movie that came to mind recently. For those who haven’t seen the movie, it’s set in the south — Mississippi, I think — during the Great Depression. Three escaped convicts, with the authorities in hot pursuit, end up at the farm owned by a cousin of one of the three men. As they are sitting at the kitchen table eating, one of them asks his farmer cousin about where his wife is. The farmer glances at his son sitting across, then back to his cousin. He first says something to the effect that he doesn’t know. Then, in a matter-of-fact manner, he adds, “Mrs. Hogwallop up and r-u-n-n-o-f-t.” We can see that he is trying to protect his son from the devastating truth about the young one’s mother.

A couple of scenes later, when the authorities have the convicts surrounded at the farm, the young boy comes driving the family car and offers to help the convicts escape again. And he says, “Get in boys. I am gonna r-u-n-n-o-f-t!”

Suddenly the audience realizes that the kid knows more than his father thinks he knows.

I am reminded of this scene every time I am with friends and relatives who try to speak of Uzma in hushed tones when the kids are within earshot. They think they are protecting our kids by not making them think of their loss. Like the father in the movie, they are well-intentioned. But they just don’t get it.

Our children saw their mother live with cancer. They saw how she chose to live life fully despite her illness. She made many new friends in her last few years. She wrote a blog. She wrote a book. She was a model for a nationwide beauty store chain. The saw all that.

When Uzma was around, she was the one who first greeted them when they returned home from school. When she was well, it was she who took them clothes’ shopping. She cooked their favorite meals. She arranged their play-dates. She nursed them when they were sick.

Then they saw their mother gradually become weak. She stopped doing most of the things she used to do for them. They saw her become unable to climb stairs, bathe, use the bathroom and even get into her bed on her own. They were next to her when she breathed her last. They lay next to her for several minutes before the funeral home staff came to take her away. They felt her get cold and stiff. The saw and felt her die.

Whispers and hushed tones are for secrets, especially shameful ones. Uzma’s death is not a shameful secret that must be whispered about.

The way she lived it and way she died is burned in my and our kids’ memories. Whether we speak of her every day or not speak of her for months is irrelevant to us missing her. How is it possible that not speaking about her in our kids’ presence will make them feel their loss any less than daily absence does?

There’s no shame in loss, no guilt in grief and no embarrassment in mourning. And let’s not make our kids think so.

 

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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.