Posted on

On Thoughtful Giving For Breast Cancer – 2021 Update

My wife Uzma died of breast cancer over two years 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 280,000 American women will be diagnosed with breast cancer in 2021, and over 43,000 will die from it. 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 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 stay 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. Pink banners. Pink everything. The message everywhere? “Do your mammograms!”

The push for mammograms never cautions that one in five screening mammograms are false negatives, i.e., they fail to detect breast 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 cancerous lymph node in her armpit.

The other message that isn’t highlighted during Pinktober is that almost one-third of women whose cancer is detected by mammograms will go on to have stage 4 breast cancer. And 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 readily 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. Metavivor and BCRF have similar administrative expenses as a percentage of their budgets. And it’s quite a bit lower than Komen.  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 9% and 0% of expenditures at BCRF and Metavivor, respectively. As an absolute number and a percentage of its budget, Komen spends the least on research of the three organizations. 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. I think of the following questions when donating to breast cancer-focused charities:

  • Is it more important to me that my donation goes to research?
  • Do I want more of my hard-earned cash to go towards making more women aware of the importance of screening?
  • Or do I prefer that more of it go to research?
  • How much of it do I want to go research focused on stage 4?
  • Do I 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 review that information and give our money to the charities that most match our values and preferences.

Posted on

Remembering

It has been just over two and a half years since Uzma died. It was twenty years ago today that we promised to be together forever.

Life doesn’t stop when some we love profoundly dies.

Other loved ones’ love needs reciprocating. The constant chorus of bills, work, and chores needs attending. Children’s camps and experiences need planning, arranging, and scheduling. Slowly but surely, life grows around grief.

Grief doesn’t diminish or vanish. It just starts to look smaller compared to the experiences added to our life since the loss. Just as building an addition to the house makes the other rooms a smaller portion of the grown house without shrinking them in reality.

We start taking doing things again for fun. We start taking vacations. And then, out of the blue, something brings the memories flooding in. It could be a visit to a beach we visited together ages ago. Or a walk past a hotel where one stayed in another life. Or a friend’s wife getting admitted to hospice. The kids’ birthdays do it. And so do anniversaries — definitely, the marriage anniversary.

Once the memories overflow the banks of the daily stuff, they take a while to recede. As they recede, we are left longing for another memory-flood.

Posted on

Mother, Daughter And Breast Cancer

“This will doom my daughter,” my wife Uzma said while we were waiting for the results of her breast biopsy in 2013.

As expected, the news of Uzma’s breast cancer diagnosis in 2013 brought fear, anxiety, and sadness of unprecedented proportions in our life.
What will happen to me?
What if the surgery doesn’t take out everything?
Will chemotherapy work?
How will I survive chemotherapy?
How will we manage all this with our young kids?
These were some of the questions I remember Uzma asking back then. Almost anyone with a heart can imagine that someone with any cancer diagnosis would ask these questions.

But worrying that early about our daughter and her risk of breast cancer is something that only mothers and those who can learn to listen to mothers can understand. This concern was a recurrent visitor to Uzma and my discussions.

She knew it was no fault of hers that she got breast cancer. When determining a woman’s breast cancer risk, doctors ask, “Do you have a first-degree relative who was ever diagnosed with breast cancer?” And our daughter’s answer will always have to be an unequivocal yes. Uzma never could get this thought out of her head.

It wasn’t something she dwelled on a lot because there was nothing she could do about it. It was the hand that fate had dealt mom and daughter.

There was also a part of Uzma that thought there was a silver lining to her diagnosis. Two of her aunts had breast cancer. But because her mother did not, this family history did not matter in determining Uzma’s risk of breast cancer. Uzma believed that had her mother also had this scourge, her own dense breasts might have led to more aggressive investigations. And it might have made the difference between being diagnosed at Stage 2 vs. Stage 3. That would have meant a difference a prognosis. Uzma believed that her cancer will give our daughter a better chance at an earlier diagnosis.

There was a third reason that Uzma learned not to dwell too much on our daughter’s risk. It was the knowledge that genes aren’t everything. Which genes influence changes in our bodies at which times in our lives are affected by various environmental factors. The the quality of our childhood, our diet, our physical activity, and stress are some of the things that are known to affect which genes get turned on and hen. While genetics has come a long way in the last couple of decades, we still don’t know how to turn on and turn off cancer genes in a way that will make a difference in people’s lives. Even though our daughter’s risk of breast cancer will always be greater than a person without a family history, as long as we help our daughter grow to be a psychologically resilient, physically active person who eats healthy, her risk could be lowered.

[A word about the featured photo: This is a print that Uzma purchased about ten years ago, and it hangs prominently in our home in a large frame. It depicts Lord Krishna and his mother, Yashoda. Yashoda was not his biological mother but raised him as her own. Hindu children grow up hearing stories of her love for Krishna, who would have been a handful for any mother due to his mischief and daredevilry. Uzma was not a Hindu, but the image touched her as something that beautifully captures the bond between mother and child. When he was about two years old, our son believed that this image was of Uzma and him. Later, when our daughter was about two years old, she thought that it was Uzma and her. They both outgrew that belief, but there’s something in this image that captures and conveys maternal affection even to a child.]

Posted on

Why We Are In Counseling

Most people are not surprised to learn that the kids and I are in counseling since their mother, my wife Uzma, died almost a year and a half ago. Some people are, however, surprised that a psychiatrist would need counseling.

Will we need counseling? I wrestled with this question for a few months before Uzma died. When Uzma’s cancer came back as stage 4, both of us knew we were unlikely to grow old together. The diagnosis of stage 4 cancer instantaneously brings the end of life in one’s field of vision. If it happens after a period of remission, one stops being a survivor and becomes an impending mortality statistic. Each passing day, each failed treatment moves death from the periphery to a more central position in one’s mind. It casts an ominous shadow on every part of one’s life.

Many of those who love a person with stage 4 cancer start experiencing elements of grief long before that person breathes her last. Beginning to mourn for a near-certain loss before the loss happens is called anticipatory grief. I am not sure that we should continue calling such sorrow “anticipatory.” Often a death from cancer — and some other debilitating chronic illnesses — is preceded by a parade of losses, some of which I wrote about in Cost Of Cancer:

…Travel to and from the clinic where the patient receives treatment adds to the burden of illness. There are lost wages – for the patient, and also for any family member(s) or friends(s) who accompany her to various treatments. Families often have to struggle to find time to plan and cook meals. They end up eating more frozen or restaurant meals, which are less healthy and more expensive than home-cooked meals. Since Stage 4 patients will be in treatment for the rest of their lives, there’s no end to all this.

Stage 4 cancer didn’t just spread through Uzma’s liver. It spread throughout her life, our life. We have supportive friends and family, but it was as if cancer threw a noose around our life and slowly but steadily kept tightening it. Our social and professional life constricted during treatment…

The longer a person lives with stage 4 cancer, the more those short-of-death losses keep piling on. I have come to believe that to some degree, what we call “anticipatory” grief, in reality, is the mourning for losses that have already begun — injuries that are warning of an even more devastating loss.

What will I learn from a counselor or therapist that I don’t already know? I asked myself this question when thinking of counseling. Indeed, I have helped bereaved individuals in my work. I probably know at least as much about overcoming loss and grief as most mental health professionals. Nevertheless, in the circumstances like these, it’s not the knowledge that is faulty, but its application. The heart makes it difficult for the head to remain objective when one has to treat oneself, or one’s loved ones. As Sir William Osler, one of the wisest physicians who ever lived said:

A physician who treats himself has a fool for a patient.

Our kids and I were about to experience two significant losses — my wife and their mother. Though some psychologists rate the death of a spouse as the most stressful event a person can experience, I find it difficult to imagine any loss harder a child losing a parent. It has the potential to permanently derail the road to the development of a stable sense of self, which is essential for both happiness and success in life.

Listen to Stephen Colbert and Anderson Cooper talk about the effect of losing their fathers at ten years old. (If you play and don’t skip ahead the video will automatically stop playing at 4:07). They describe the impact of the loss of a parent in ways similar to how I have heard patients describe it:

Transcript: :

And you’ve spoken very publicly about what you experienced as a kid. And I just, a lot of it I didn’t know. I think a lot of people don’t know. So if you don’t mind, I wanted to talk to you a little about it and sort of how it has shaped who you are now?

Your dad was killed in a plane crash. You were 10 years old along with your two brothers, Peter and Paul. And they were the closest brothers to you in age.

Stephen Colbert: Right, it goes Jimmy, Eddie, Mary, Billy and Margo, Tommy, Jay, Lulu, Paul, Peter, Steven.

Anderson Cooper: 11 are there?

Colbert: I’m the youngest of 11.

Cooper: All right. My dad died when I was 10, too. It is such a horrible age to lose a father. I can’t imagine losing both my brothers at the same time as well. For me, losing my dad then, it changed the trajectory in my life.

I’m a different person than I feel like I was meant to be. And I feel like there are times I, yes, I’m, I feel like I remember when I was 10, I felt like I marked time. To this day I mark time between while my dad was alive and after. It is like the New Year zero. It’s like when Pol Pot took over Cambodia [empahsis mine].

Colbert: Without a doubt. Without a doubt. Yes. There’s another guy. There is another Steve. There is a Steve Colbert there is that kid before my father and brothers died. And it is kind of difficult. I have fairly vivid memories from right after they died to the present. It’s continuous and contiguous you know like it is all connected. There is a big break in the cable of my memory at their death. Everything before that has an odd ghostly–

Cooper: Like shards of glass. Like flashes.

Colbert: Little bits of it and then the thing that, really like music because they died in September. They died on September 11th, 1974. The music from that summer leading up to it I will undo me in an instant.

The song of the summer was band on the run. Do not play band on the run around me. Yes. You become a different person like I was just personally shattered. And then you kind of re-form yourself in this quiet, grieving world that was created in the house.

And my mother had me to take care of, which I think was sort of a gift for her, it was a sense of purpose at that point because I was the last child. But I also had her to take care of. It became a very quiet house and very dark.

And ordinary concerns of childhood suddenly disappeared. I won’t say mature because that actually was kind of delayed by the death of my father, by restarting at 10. But I had a different point of view than the children around me [emphasis mine].

Cooper: There was a writer, Mary Gordon, who wrote about fatherless girls and I think it applies and my mom used to quote it to me all the time but I think it applies to boys as well as paraphrase. A fatherless child thinks all things possible and nothing is safe. And I never really understood when my mom would say when I was alone, young but I’ve come to understand it.

All skilled mental health professionals regularly practice managing the impact of their own emotions on their treatment relationships. That, however, does not make us superhuman. In our roles as husbands, parents, children, siblings, and friends, we remain just as capable of acting on our petty and sublime feelings as our patients. Grief can emotionally paralyze grown men and women, let alone children. Growing up motherless is not easy for kids, but what would their fate be if their father were to succumb to grief? No child can survive the emotional impact of losing their mother to cancer and their father, even if not literally, at the same time.

It was a high-probability, high-risk scenario.

That’s why I decided that we would all go to grief counseling. And that is why I only waited a couple of weeks after Uzma’s death before setting up our first appointment.

[Featured Photo by Taylor Hernandez on Unsplash]

Posted on

Saying Goodbye To Patients

“I don’t want to say goodbye to patients,” Uzma told me one day in late March 2016. “But I feel as if I don’t have a choice,” she added.

She wasn’t thinking of retiring from medicine. It was to be more of an extended self-care break. “I will take six-to-months off. Then I will return to work.”

February had brought the terrible news that Uzma’s cancer had returned. It was now in the liver, which is never a good sign. Only half of the patients whose breast cancer spreads to the liver survive for more than three years. We both knew this. This knowledge unleashed a flood of feelings that got in the way of being the kind of psychiatrist, the kind of physician that Uzma was used to being — emotionally fully available to her patients when she was at work.

A diagnosis of cancer brings unwanted ownership of a metaphorical box or jar in one’s mind. This box is the opposite of what the mythical Greek woman Pandora unwittingly opened. Hope is outside the box. There it allows the person with cancer to willingly and smilingly take that harsh drugs that aim to kill rogue cells. The dread of cancer’s return and all the feelings linked to that dread live inside the box.

Anxiety, terror, and helplessness live inside that box. And so does the guilt of being the person who brought cancer’s burdens into the lives of loved ones. Sadness stemming from lost personal and professional dreams survives in there.  When cancer is in remission, this mental box seems to get lighter and smaller. Sometimes it may be forgotten for weeks or months on end. But it stays there. The ownership of this box is not just unwanted — it is permanent.

Recurrence and the spread of cancer opened wide Uzma’s cancer-feelings box. From that day on, she felt its weight every single moment that she was awake. The now unrestrained emotions even intruded upon her sleep. Sometimes, they kept her from falling asleep. On other occasions, they injected nightmares into her mind when it was supposed to rest.

She realized that her feelings so overwhelmed her that she couldn’t give any of herself to her patients. That’s what drove her decision to take a break. She said, “If the treatment seems to work, I will return to practice in the fall. Or maybe, next year.”

Becoming a doctor takes a long time. It requires an all-consuming commitment to absorbing a considerable body of knowledge. An apprenticeship called residency follows. Depending on the specialty, the residency lasts three to more than seven years. Most doctors sacrifice the first decade of their adulthood, the prime of their youth, to the altar of medicine. During that time, they breathe, eat, drink, and live medicine or the pursuit of medicine. Most can’t find time for anything else. In the end, medicine so shapes the foundation of their adulthood that it becomes an integral part of their identity. Once a doctor, always a doctor.

Taking a break for treating patients felt like an emotional amputation to Uzma. I believe that though she did not allow herself to say it aloud then, she already knew that this was it — that this moment was to be her retirement from medicine.  The cancer-feelings box was now enormous, heavy, and yawning wide. It was impossible to force it closed for long enough to relax and focus on helping patients.

Uzma began spending more time with our kids. She took writing classes and art classes. She honed her creativity in a way that linked many hearts to hers.  Some of those hearts belonged in a Facebook group of physician moms that she had joined in 2014. Many belonged outside that. She practiced distancing herself from toxic people. All of this helped her cope with her heavy and open cancer-feelings box.

When the fall of 2016 came around, Uzma contemplated returning to work. But she was in two minds about it. On the one hand, she realized the work it took to manage her fears and anxieties around cancer. She didn’t think she could keep up with that work while also returning to practice. On the other hand, not returning meant giving up all hope of the amputated physician identity becoming whole again.

But she knew she could no longer give her all to patients when she was with them. She knew she would be almost continuously distracted by her own emotions when treating them. She knew they deserved better. So she sacrificed part of herself for the sake of the obligation she felt to her patients.

This month, it has been four years since Uzma quit the practice of medicine. It would take her another year and the spread of cancer to her skull before she would finally say aloud that she was retired. But four years ago, as she struggled with leaving medicine, this is what she wrote on her Facebook timeline on April 16, 2016:

Thinking about the relationship we doctors have with our patients.

They trust us, open their hearts to us, and let us into their lives. We can ask them anything and they are expected to answer. We become so important to them. They rely on us and depend on our recommendations and advice.

But then, unlike regular relationships, this intense relationship can end abruptly. There may or may not be a closure, some exchange of niceties, and perhaps a hug. And then it is over.

I have said bye to many patients over the course of my career. Each time it’s equally painful. But each one of them had left me with an insight, a lesson, a message that I keep close to my heart.

I always say, its a privilege that someone let me be a part of their pain and suffering, that they shared a slice of their heart with me and show me, what life truly is.

I would do it over and over again. Being a physician is such an honor.

Today I grieve saying bye to some of my patients, today I look forward to new beginnings.

Featured Image by Jose Antonio Alba from Pixabay 

Posted on

Gratitude In The Shadow Of A Momentous Loss

Cancer took my wife, Uzma this year. Many dreams died with her. Her solo aspirations and our shared ones. All went, poof! Come to think of it, these dreams died in 2017. By then, it was clear she was not going to be one of the lucky ones who get to live many years with stage 4 breast cancer. But this year, those dreams were finally laid to rest.

When some dreams die, years later, one looks back and says, “I am grateful that didn’t work out. Because of that not working out this more amazing thing, that was better for me, in the long run, worked out.” I don’t believe such a retrospective reappraisal of a loss of a loved one and shared dreams is possible. Even if it were possible, I don’t think anyone would fault me for not experiencing this form of gratitude quite yet.

I am not mad at the fates for taking Uzma away. Uzma never once asked, at least aloud, that I can recall, “Why me?” She once said, “About 150,000 people die every day around the world; what not me?” Of those 150,000, about one third die young. Just because I am not mad at destiny doesn’t mean I have to be grateful for it.

Yet, Thanksgiving is here. It is an annual reminder to exercise gratitude, one of the key acts that can help one live a better life.  So, this Thanksgiving, what do I feel grateful for?

First of all, destiny, luck, fate, I take it back. I am indeed grateful to you for having brought us — Uzma and me — together. Without you, there is no way that a person belonging to the Kashmiri Pandit community, a community ethnically cleansed out of their homeland by Pakistan-sponsored and trained terrorists, would ever have met an actual person from Pakistan. Without you, we would not have been in love. Our marriage wouldn’t be a thing. Our kids, us in the house we are in, none of this would exist. Yes, like the gods in some greek myth, you extracted a heavy price for giving us all that. But it allowed for Uzma to become part of me. For that, I am grateful.

Second, I am grateful to Uzma. I know you can no longer hear me. You loved me back. You loved me even for my quirks, not despite them. All the times we spent in each other’s arms, in moments of joy and sorrow, and moments of just being, those are all memories I am thankful for. I am grateful for the two amazing kids we have together. I am grateful for your voice in my head that will forever be there telling me things.

You used to help me appear as having a better sense of style and fashion than comes naturally to me. And how to improve a particular presentation. To take care of myself emotionally and physically. And about the importance of social niceties  — they are not there to make life difficult; they are there to help strangers become friends. Your love and voice will always be with me. For that, I am grateful.

Third, I am grateful for my amazing parents and extended family. In the 1990s, when Uzma and I met, we were still reeling from the ethnic cleansing of our community from our homeland in that same decade. Naturally, all of you had reservations about Uzma and me. Yet, not one of you rejected me. And you welcomed Uzma into the family with love. Uzma used to say, “Your family is too filmy!”

This was a reference to those idolized families depicted in many feel-good Bollywood movies. Of course, over the years, she would learn that we have our own dysfunctions and flaws like all ordinary families. However, her initial impression speaks to how welcome she felt. You were by our side when she joined us, and you with us when she left. And both times and many times in between with so much love. For that, I am grateful.

Fourth, I am grateful for those in Uzma’s extended family who accepted us together without judgment. This was as hard, if not harder, for them as it was for my family. Their religion explicitly forbade a union like ours, where each half of the couple kept their own faith. And of course, they are as affected by the geopolitics of South Asia as my family is. Yet, there were those among you who accept us and love us without judgment. When her closest family members shunned her, you are the ones who sustained her more than you can imagine. For that, I am grateful.

Fifth, I am grateful for all those friends Uzma brought into our life together. Uzma had a knack for turning strangers into friends. Recently I saw a book for sale called “Superattractor.” I don’t know what that book is about, but that title reminded me of Uzma. She was a superattactor. Students from college, coworkers, neighbors, people she met in classes she took to develop her hobbies, folks she connected with on facebook and in all other walks of life, became her friends. She was also a “superkeeper”. She kept friends for life. Many of those friends are in our lives even after Uzma is gone. If friends are family you choose, thank you for choosing us. It can’t be easy without the superattractor around. For that, I am grateful.

Sixth, I am grateful for my employer and my colleagues at work. My work-family is incredibly supportive. I never had to think twice about taking time off to be with Uzma for her planned appointments or unplanned procedures. Work is where we spend at least one-third of our life. My colleagues, work-friends and my bosses who were just there for me. There’s just no other way to describe it. For that, I am grateful.

Seventh, I am grateful for all the readers of Uzma’s blog and book who write to tell me how her book helps them cope with their own cancer journey or loss journey. It shows me why she really wanted to get the book out there. That you all take time to let me know of its impact is amazing. For that, I am grateful.

Finally, I am grateful for the United States of America. Despite all its flaws, America remains one of the best places to live in the world. It has some of the most big-hearted and open-minded people. Yes, I don’t like the current dispensation and what it stands for. But it is our political representative. But it does not represent everything that the majority of Americans are. I am thankful to those Americans. You gave me a chance to live and build a life here. Without you, Uzma and I would never have met. Without you, we would not have this best among all family celebrations — Thanksgiving, the only holiday that celebrates gratitude without any obligated religious rituals.

And while we should all be practicing gratitude year-round, Thanksgiving is this — an annual reminder to focus the mind on this essential activity.

For all of it, I am grateful.

(Featured image by j_lloa at Pixabay)

Posted on

The Stairlift: A Tale Of Regret

“Will you come up the stairs a step or two behind me?” Uzma asked me one day in early September 2018 as we were getting ready to go to bed. Various chemotherapy regimens had damaged her peripheral nerves. Sometimes when that happens, a person’s kinesthetic sense is lost. That is, they can’t tell where a part of their body without also looking at it. Uzma was having difficulty feeling the floor and just knowing where her foot was without looking at it. Walking steadily without support was becoming an increasing challenge.

It started out as an off-and-on problem, but for the past three or four months, it was more often on than off. “I just don’t feel safe going up by myself today,” she explained. “Of course,” I said, and walked one step behind her as she went up the stairs. The next morning I walked a step ahead of her as she came down for the day.

I didn’t know it then, but that — me climbing up the stairs one step behind Uzma, and one step ahead of her when coming down — was soon to become a daily routine. It was as if we were finally doing the phere (rounds around the fire) that we had missed when we skipped our religious wedding ceremonies. Only the fire was one lit by cancer, and it was consuming Uzma’s body. Gradually, by late October, weakness and overwhelming fatigue started to compound the balance problems. She spoke about needing a nap after a shower. Then one day, she asked, “Could you give my bottom just a little push as I go up each step?” She could walk by herself, taking support from a wall, on flat ground. But going up and down steps was another matter. I started wondering if I should look into stairlifts.

* * *

Mental health professionals will recognize “Woulda, coulda, shoulda!” as the words that haunt people whose lives are stalked by the twin demons of guilt and regret. These three words, obsessed over too much, lead a mind down the labyrinthine rabbit-hole of soul-numbing depression and anxiety.  At least as it relates to Uzma and being there for her, the two demons don’t quite barge into my memories and dreams. But I do see their shadows, sometimes. Those shadows led to my posts about Costs of Cancer, and to my understanding of how and why a referral to hospice was delayed.

The differences of faith and national origin we overcame to be together made our love unusual. But none of what I am about to describe below was out of the ordinary. Hundreds of thousands of people around the world are caregivers for their loved ones with cancer. They do all that I did with Uzma, and then some. They do it without fanfare and without recognition. I need no medal either.

* * *

Once Uzma was told her cancer was stage 4, it was as if she had been thrown off the train we had been riding together. She was put on a different train from her family. It ran on a track next to ours. We kept pace together. We just knew that her track was gonna end before ours. When you are riding a train, you can’t really see where the track ends even if you know it will.  Like many in our situation, despite being on separate trains, we held hands, stayed up together, spoke of our dreams and our fears. We tried to help each other as much as we could. I kept helping her with an increasing number of daily tasks of self-care as her train slowed. She kept helping me through life’s problems to the very end.

Living life fully with Uzma even knowing our journeys were separate is what saves me from the guilt that some feel after a loved one is no more. Guilt is uppercase “Woulda, Coulda, Shoulda.” We can avoid guilt by how we live and treat each other when we together. Regret is another story. It is inevitably intertwined with loss. Its focus, degree, and intensity may vary, but where there is grief, there’s regret. Once Uzma’s cancer had spread beyond the breast and its lymph nodes, her end was written. Nothing could change that fate. But I do think at times, if I had done this or done that, perhaps her final days could have been more comfortable. Regret is lowercase “woulda, coulda, shoulda.”

* * *

In August of her final year with us, Uzma confided, “I am too disabled to do anything with you or the kids. I am not sure there’s any point in continuing treatment.” She was in two minds about continuing treatment. She felt tired, exhausted. The cancer treatment toolbox is full of poison meant to burn the cells that are not sticking to the plan and are doing their own thing. Though these treatments also harm normal cells — hence the side-effects — patients willingly take them.

They take them because of hope. They think, “So what if I will have some temporary or lasting damage. If this treatment ends up working, at least I will be free of cancer. And I will be there with and for my family.” But when the errant cells turn skilled tricksters, oncologists are left playing whac-a-mole with their treatments. The patient suffers a lot of hits on her body while the mole that is cancer seems none the worse for it.

The first drug Uzma took after her cancer came back kept it at bay for nine months. After that, nothing worked for more than 3-4 months. Fantasies of N.E.D. (no evidence of disease) status became ephemeral illusions. For some people, successive treatments manage to work for several months or rarely, even a few years at a time. Uzma wasn’t so lucky. Uzma was tired of the hits her body was taking without any benefit.

When she said she was in two minds about continuing treatment, I said, “You have suffered a lot. If you stop treatment, I will support that decision. I won’t think you love our kids or me any less just because you stop treatment.” It seems like the right thing to have said at that moment.

But I think it would have been better to say, “I love you. You’ve suffered a lot. You think you have to keep going, to take that one more chance that our kids won’t grow up motherless. But you are taking a beating. It might be time to be a bit selfish and choose comfort over another treatment.” One might think, what’s the difference? The first way of saying implies that the decision to quit treatment is hers, and I am there just for support. The second way is one where I help her think and feel through this decision.

I thought of saying something like the second way, but then, despite all the love we had nurtured over the years, or maybe because of it, I bit my tongue. I thought, what if she sees that as me picking a side against hope? What if she sees that this isn’t just her husband saying this but someone who also happens to be a physician? Does the physician in him see no hope at all? Is it that bad? Am I so far gone?

* * *

The reason I feel regret but not guilt about this is that I still believe that oncologists should be responsible for bringing up hospice in a timely manner. Patients and families don’t know a lot about hospice, about it can help. They think of it as only as a death sentence. The fact is the oncologists know that the death sentence is stage 4 cancer whose odds of responding in a timely manner keep going down with each successive treatment failure. An intense cloud of emotions envelopes patients and families dealing with terminal cancer. They can’t see things as clearly as their doctors can.

Uzma made some physical therapy (PT) appointments in October, hoping that PT will help her gain her strength and balance back. However, her unrelenting cancer kept grinding her body down. The resulting weakness meant she could never keep any of those appointments. Between September and December, medicines caused bone-marrow suppression. She had to have multiple blood transfusions. Though I can tell the various ways in which both of us were clear-eyed about her prognosis, there are also ways in which we didn’t want to buy it.

* * *

Even before Uzma’s oncologist finally stopped treatment and referred her to hospice, the writing was on the wall. In early December, I started calling business outfits that installed stairlifts. Because it was the holiday season, everything took longer. Visits to take measurements took longer to schedule. Quotes took longer. Actually scheduling the installation took longer.

The emotionally toughest decision around the stairlift was whether to rent or buy. By this time, Uzma was too tired and drained all the time to participate in any household decision. To rent or buy had to be my decision alone. The total rent for about eight months was to be the same as the cost of buying outright. Was she going to live eight months? What was more important — a rational decision about money, or letting Uzma know that I thought there was still hope?

Part of me just wanted to buy. Part of me wished health insurance covered stairlifts. Then the insurance overlords would make the decision. And I would accept the decision while blaming them for limiting our choice. But stairlifts are home modifications, not medical equipment. So, no insurance company knight-in-shining armor. I decided to rent it. At least that decision made choosing the company I went with easier; of the ones I got quotes from, only one rented them. I dreaded what I would say if Uzma asked if we bought or rented the stairlift. Would I tell her the truth? She always wanted to wrestle with the truth, no matter how difficult the match. Or would I tell a white lie that would not hurt her? To this day, I feel that dread. But Uzma didn’t ask, and I didn’t tell.

The stairlift eventually came in late December. Immediately, I saw how much easier it made things for Uzma. She no longer felt nervous going up or down the stairs. To this day, I regret not having pursued the matter of the stairlift when I first thought of it in October.

* * *

Grief is a mixed bag both when death comes unexpectedly and when it is long and drawn-out. In the first kind, it’s as if a nuclear winter falls over a family. The old world goes dark in the snap of a finger. A sudden loss is incredibly tough on the grieving; it has the potential to complicate mourning with a mountain of regret.

In the gradual type of loss, death first casts a shadow on a family. The shadow gets imperceptibly longer each day. Sometimes years and months pass with barely noticeable changes. Then just towards the evening of the loved one’s life, the shadow seems to lengthen so quickly that it feels like only seconds. The evening mist that one was far in the distance is suddenly upon us. And just like that, our loved one is gone. The speed of the final stages of dying creates opportunities for regrets even in this kind of loss. The only hope is that the regrets are few and fleeting.

Posted on

Halloween

Halloween has come and gone. It is my favorite festival in America. Grown-ups get to be kids, and kids get to be themselves. No questions asked. They go door to door, and even the most reserved of people open their doors to them today.

Yet Halloween will always also bring sadness because of what I vividly remember thinking last year.

Uzma used to love Halloween. Mainly for the joy on the faces of all kids — not just our own. She would always go to our kids’ Halloween event in school. She looked forward to accompanying the kids when they went trick or treating. Last year she felt too weak and tired to go.

After being out for one hour with the kids last year, I remember thinking, “Two years ago, Uzma was with our kids the entire time. Last year she went for only about thirty minutes and then wanted to go home. This year she couldn’t come at all. I wonder…” I didn’t want to finish that thought. But I knew what I feared. She made it to 92 days after that.

This Halloween, I could find only one of our Halloween decorations. Though I was the one who put all of them away last year, it was my first year doing that. I couldn’t even find the kids trick-or-treating pails. It didn’t turn into a disaster because Gauri agreed to take a cloth bag, and Shuja decided to skip trick-or-treating altogether.

It snowed three inches on Halloween. It was cold, wet, and slippery. Shuja said, “I don’t want to be miserable out there. I would rather not go.” We barely had ten kids come to our house. Typically, the homes in our neighborhood, with its arrangement of smallish houses with small yards, attracts tons of kids. But I guess snow-covered jack-o-lanterns and Halloween decorations are uninviting.

The tradition in many Indian families is to not participate in festivals and celebrations until after the first anniversary of a loved one’s death. The kids look forward to Halloween so much that I had decided that we will make it an exception. But it felt today as if the gods didn’t want us to celebrate too much either. They were the same gods that made the night of Uzma’s passing the coldest night in Chicago in decades. I know I shouldn’t personalize a natural event, but that’s how it felt today.

Halloween also happens to be the last day of Breast Cancer Awareness month in the US. Last year, it was also the eve of Uzma’s book launch. Uzma deliberately chose Nov 1 to launch her book. She said, “Breast cancer awareness doesn’t end on Oct 31. For us, survivors and our families, it is a hard daily reality. I want to launch my book outside of the awareness month.”

She would have loved to see the incredible reviews her book gets. She would have loved to go on tour to promote it. She would have been impressive at it.

Halloween was when I first realized that she would not get to do any of that.

It will always be a fun festival. And a bittersweet one. Forever.

 

Posted on

Cut-resistant Gloves And Cancer

Some years ago, I saw an advertisement for “NoCry” cut-resistant gloves. The picture in the ad showed two hands wearing the gloves and a large kitchen knife being pulled across one palm (see bottom of page). At that time, I thought, “No one pulls a kitchen knife across one’s palm like that!” I wondered who would genuinely need these gloves. They will never pay for themselves except for people who accidentally cut themselves all the time. Then, two years ago, I bought them.

Over the course of her multiple chemotherapy regimens, especially since her cancer returned in 2016, Uzma developed nerve damage known as chemotherapy-induced peripheral neuropathy (CIPN). CIPN is a common side-effect of many cancer medications. One scientific study found that almost 70% of cancer patients have CIPN one month after chemotherapy ends. For many, the symptoms subside with time since treatment, but the same study found that almost one-third of cancer patients still have CIPN six months out of treatment.

There isn’t one particular explanation for CIPN. Science tells us that there many roads to this kind of nerve-damage with cancer treatment. Some mechanisms are more relevant to some drugs, while others play a role in CIPN caused by other medications. We know that smoking, pre-existing neuropathy (from diseases such as diabetes), and impaired kidney function increase the risk of CIPN. In most cases, large nerve fibers suffer damage, leading to a “glove and stocking” pattern of symptoms. That is, the symptoms are most significant in the areas of the body that gloves and stockings would cover.

These symptoms commonly include varying degrees of burning pain, numbness, tingling, itching, and other unusual sensations. They may also include weakness, and when involving the feet, problems with balance. Changes in heart rate, diarrhea, or bowel movement patterns can occur in case of damage to nerves for automatic functions.

By the final several months of Uzma’s life, she had constant burning pain, tingling, and numbness in the glove and stocking pattern. By mid-2018, the problems with dulled sensation had become strong enough that she stopped driving.  She felt she couldn’t be sure about applying the right amount of pressure on the gas or brake pedals. By then, problems with weakness and balance also became significant enough that she had a couple of falls on the street. From that point on, she needed assistance when walking, especially outside the home. Eventually, in the house too.

By the time Uzma left us, we were renting a stairlift and owned all sorts of equipment including, suction bathroom handrails, a shower stool, a toilet seat riser, toilet seat handrails, a cane, a rollator, and a wheelchair. The goal was to help her maintain as much independence as possible.

The first tool we purchased, way back in 2017, to help with CIPN-related disability was a pair of cut-resistant gloves. You see, long before, burning pain, weakness, and problems with balance, Uzma had started to have numbness in her fingertips. It made her frustrated at needing help with one of the things she loved to do — cook. The numbness caused her to feel afraid to use knives. Though she would ask me for help, she hated that she couldn’t just start food prep whenever she wanted to and had to rely on someone to help. The cut-resistant gloves fixed that problem and gave her confidence back. She could ask for help if she wanted, but she didn’t have to ask for help.

I was reminded of this while reading this piece in the online magazine Vox:

vox-article-on-useless-products

As the article rightly points out the utility of a banana-slicer, “Imagine being unable to slice a banana over your morning cereal because your hands are paralyzed or joint contractures make it hard to grip both the banana and the knife.” It then makes us think about the kinds of impairments that for which ‘useless’ tools such as a sock-slider and yolk separator might be helpful.

I admit that commercials for these products are sometimes too funny. They often show people making exaggerated movements while doing things like separating egg yolks or putting on socks. The exaggerated movements lead to spoiled eggs or falls. Then they present the relevant product as the solution. Maybe those people in the commercials can’t do things the usual way. Perhaps they have a disability that is not evident to the casual observer. I think the ads may have to be that way. While the product may have been developed for a niche group of people, limiting one’s sales to that niche will never get the profits that a broad market will.

It’s easy for us to think walkers and canes help with disabilities because the impairments for which they help are usually evident to us. Let’s pause once in a while and think about the products that help with not-so-obvious difficulties.

And let’s give a thought to cancer patients suffering from nerve-related pain, numbness, and weakness. Let’s ask our loved ones with cancer about it as often they won’t complain about this. They think this is the least of their problems. Even if that were true, neuropathy is a problem with real consequences and risks for them.

cut-resistant-glovesbanana-slicersock-slider

Posted on

How Long Should Cancer Drugs Stay Expensive?

In 2016, my wife Uzma learned that her breast cancer had returned. It had spread to her liver. The first treatment that she received for her stage 4 breast cancer was Ibrance (palbociclib). It’s a pill you take by mouth. She didn’t have to go to the clinic for infusions. As her oncologist said, it had few side-effects. She didn’t lose her hair, though it did thin a bit. At that time Ibrance cost just over $10,000 a month out-of-pocket. We were grateful to have good insurance; our copay was ‘only’ $3,000 a month. Cancer drugs are expensive, in case you didn’t know.

The pharmaceutical industry and health economics experts tell us that it is expensive to research cancer drugs. They say that accurate estimates of R&D (research and development) costs of cancer drugs must include the cost of developing, researching and studying all the compounds that show early promise but ultimately fail in studies and don’t make it market.

In Jan 2019 a study was published in JAMA that is the first one to examine the ROI (return on investment) for cancer drugs in a systematic way. It examines the ROI for 99 cancer drugs approved by the FDA between 1989 and 2017.

cancer-drugs-roi

The key findings of the study are:

  • For each $1 spent on R&D for cancer medicines, Pharma earned between $3.30 and $55.10 with the median being $14.50.
  • The companies earned the full cost of R&D between 2 and 10 years of FDA-approval, with the median being 5 years.

Going by these findings, it would appear that after 5 years, there is no good reason for half of all drugs to be as expensive as they are. And the drug manufacturers would fully recover their cost of R&D and then some if they cut prices by half 10 years after FDA-approval.