A Reflection On July 4th

Below is the oath every naturalized citizen takes at the time of being granted citizenship.

We immigrants consciously make the decision to adopt this country as our homeland. It takes many sacrifices to do so.

This fourth, ask an immigrant what they left behind to be here and the sacrifices they made. Adopting another country is hard and we are full of gratitude for America having adopted us.

We have faith in our country and countrymen. Despite the current environment, it is a great nation. American people are full of generosity and have open hearts. We must stand together against hate and bigotry.

I hope we continue to value our diversity and morals that have guided this nation to success and enrichment.

We the people!

God Bless America!

Naturalization Oath of Allegiance to the United States of America

“I hereby declare, on oath, that I absolutely and entirely renounce and abjure all allegiance and fidelity to any foreign prince, potentate, state, or sovereignty, of whom or which I have heretofore been a subject or citizen; that I will support and defend the Constitution and laws of the United States of America against all enemies, foreign and domestic; that I will bear true faith and allegiance to the same; that I will bear arms on behalf of the United States when required by the law; that I will perform noncombatant service in the Armed Forces of the United States when required by the law; that I will perform work of national importance under civilian direction when required by the law; and that I take this obligation freely, without any mental reservation or purpose of evasion; so help me God.”

[Commentary by Dheeraj Raina: This was Uzma’s Facebook post from her last July 4th. In this post, I have only changed some punctuation and formatting for ease of reading. Otherwise, it is as she wrote it. To read my approach to her unpublished work, read this.]

Photo by Avi Werde on Unsplash

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 

How “You Are Doing Well” Sounds With Cancer

“I am glad you are doing well” is probably the most insensitive thing I hear.

“You look so great!” is another doozy.

I am not sure what about stage 4 cancer falls under the category of well. I don’t complain of, or share every single side effect, ache, and pain with my friends on social media or in real life. That does not mean I don’t suffer every day. But most of my suffering is my own. I deal with it.

I am not a bald, emaciated, sobbing, dying mess…yet. That does not mean, by any stretch of the imagination, that I am “doing well.”  A stage 4 cancer patient may have all her hair even as the battle between rogue cells and harsh chemicals rages on the battlefield that is her body.  At times, I cope with the shitty hand I was dealt by denying to myself that I have an incurable illness. I distract myself by doing things that are positive and healthy. Though I try my best, one can’t always keep the terror at bay.

I am on chemotherapy. Like most stage 4 patients on continuous treatment, I am tired a lot. My doctors can’t tell yet whether this will all be worth it. Life must go one even as a small part of me is always aware that I am just one scan away from death’s doorstep. Soon, I will retire from medicine at a phase of life meant for professional growth. I may leave two young kids motherless. I have friends with cancer who are dying.

Saying that “you are doing well” may serve a purpose for those who say it. It doesn’t do anything for me and is, at times, rather infuriating. Maybe I am doing better than what people expect given my diagnosis. Perhaps, the fact that I am still upright and comforting others is deceiving. But I am not doing great, or thinking that things are well.

Given the set of circumstances, I am doing okay. I try to live as close to normal a life as I can. It takes a great effort to look well. I don’t talk about my bad days, days where I lose courage or feel defeated. I can’t avoid having those days.

Cancer sucks. Stage 4 cancer sucks even more. Hearing that someone is glad that I am “doing well,” makes it feel even worse.

I realize that most people who say this are not trying to be mean. They are well-intentioned. What would I rather have them say? I would rather that they say something that lets me know that they see my struggle. That they know how hard it is. I wish they would say something like, “Cancer sucks. Managing all of it must be so hard. It must take a lot of motivation to look as well as you do. I hope for lots of strength so you can keep up. I hope you feel well.”

[Commentary by Dheeraj Raina: This is a composite version of two Facebook posts and some unpublished content that Uzma wrote in 2016 and 2017. The words are hers. I have edited them only for grammar and clarity. To read my approach to her unpublished work, read this.]

Featured photo by Jez Timms on Unsplash.

Cancer: Where Knowledge Does Not Resolve Uncertainty

I am routinely questioned about my metastasis by anxious survivors who want to know what went wrong. They want to know my cancer type, stage, and grade. I know they are doing mental calculations to know how I am different from them. They are looking for reassurance that this won’t happen to them. Everyone who has had cancer is curious about why someone’s cancer metastasized. Will they be next? The fear is understandable.

I have no answers, no reassurance to give. Everyone is different. I have always lived a healthy lifestyle. I eat right and exercise. I was never overweight. I have never smoked tobacco, never drank alcohol, and never experimented with any drugs. Once I got cancer, I followed my oncologists’ recommendation without wavering. Yet, cancer came back.

Honestly, it’s just bad luck. Science still is not quite where they can tell who will have metastasis and who won’t. Of course, the higher the stage, the risk increases. We know something, but not everything.

Sadly, living with uncertainty is a big part of dealing with cancer, and knowing the initial stage and grade of my disease won’t change that.

[Commentary by Dheeraj Raina: This is a version of a Facebook post by Uzma dated March 31, 2017. I have edited it for grammar and clarity. To read my approach to her unpublished work, read this.]

Featured Photo by Santiago Lacarta on Unsplash

Now I Wait…

He has spoken his final words

With grace, calm and poise

And now I wait

For his act to be followed

His shoes to be filled

Now I wait

Wait For words, may be just 140

Spoken with integrity

Just as strong

As coherent

As Presidential

Less dramatic

Less provocative

Words that build a nation

Not a wall

Words that tear the divide

Not people at all

Now I wait

For us to endure

What we have chosen

What we thought we want

For what we were told we needed

Wait for it to unfold

Layer by layer

Cautiously hopeful

But worried and fearful

Can We?

A long sigh

A deep pause

May be

Hope for Change

More grace

More kindness

More respect

I hope He can

I hope We can

I hope We can

Even if He can’t.

[Commentary by Dheeraj Raina: Uzma wrote this poem on Facebook on January 10 ,2017. It was her way of coping with the impending transition from the Obama presidency to the Trump presidency. I remember she had a lot of anxiety about what kind of president would be. As soon as Trump became president Uzma joined the ACLU — American Civil Liberties Union.

The title “Now I Wait…” is Uzma’s choice. I have not words are hers without any edits. To read my approach to her unpublished work and her writings on Facebook, read this.]

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)

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. She 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. By then this had been going for some time. 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 don’t seek a 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 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 one day, “I 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 things to poison and burn the cells that are doing their own thing, not sticking to the plan. 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.” 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 were vanishing illusions. For some people, successive treatments manage to work for several months or rarely, even a couple of years at a time. Uzma wasn’t so lucky. Uzma was tired of the hits her body had taken 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 down, and the resultant weakness meant she could never keep any of those appointments. Between September and December, medicines caused enough bone-marrow suppression that she needed 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. 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 speak 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 ould see 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.

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.

 

Uzma Educates About Stage 4 Breast Cancer: Video

[This video was a stand-alone Facebook post of Uzma’s in 2017 on October 13th, Metastatic Breast Cancer Day. Read this to understand my approach to turning some of Uzma’s Facebook posts into blog posts. Below the video, I have included Uzma’s message, for which I took a transcript of the video and edited and formatted it for ease of reading and clarity. Watch the video and share Uzma’s message about metastatic breast cancer.]

Hi! My name is Uzma, for those who don’t know me. I am making this video to talk about metastatic breast cancer day, which is today, October 13th. And the reason I am choosing to make this video is to spread more awareness about metastatic breast cancer.
First of all, let me explain what metastatic breast cancer is. When people are diagnosed with breast cancer, the name means having cancer in the breast. Sometimes breast cancer goes into the lymph nodes in the armpit called the axillary lymph nodes. Based on that, cancer is given a stage.

Metastatic breast cancer is when cancer has left the breast and the lymph nodes in the armpit and has spread to other organs in the body. Breast cancer, as a disease, tends to spread to the liver, lungs, bones, or brain. Those are the typical four places where breast cancer cells tend to go.

The other name for metastatic breast cancer is secondary breast cancer or stage 4 breast cancer. With metastatic disease, the treatment goals change. The oncologists stop trying to cure cancer. Now they just want to keep it under control and manageable.

Once somebody has been diagnosed with metastatic breast cancer, they tend to stay in treatment. The only exceptions are people who have done incredibly well on treatments for 5, maybe 10 years. Then their doctors may decide that they are in remission, stop treatment, and continue ongoing monitoring.

Since there is no cure for stage 4 breast cancer, most people stay in treatment as long as they are alive. Treatment can involve oral chemotherapy pills, targeted therapies, or chemotherapy infusions. So in some way, shape, or form, the person is consistently in treatment.

The other thing is because doctors know that cancer is present, there are ongoing scans. A person goes through scans every three months. Scans may include CT scans, bone scans, PET scans, or some combination of these. The oncologists really want to see is the cancer is growing — the term they use is “progression.” Or whether it is getting smaller — they call it “regression.” Based on whether there is progression or regression, the doctors determine whether the person’s treatment is working.

The typical course of metastatic breast cancer is that whatever treatment is started will stop working at some point. It could be nine years, it could be one year, or it could be nine months. Then the patient gets transitioned to the second line of treatment.

Cancer mutates. Because it is part of the pathology of the cancer cell to change and mutate, it is tough for one treatment to work for a really long time. Now, there are metastatic breast cancer survivors who have lived 15, 17, even 20 years. There’s actually a study going on in UW-Madison where they are trying to study these super-responders to see precisely what is different about them that stay alive for so long.

The median survivor for metastatic breast cancer is three years. That is half of the patients are dead by 36 months. But there is significant variation in survival based on where the metastatic lesion is and how the disease is responding to a particular treatment. People who have just bone metastases tend to survive much longer than people who have soft-tissue metastases. By soft-tissue, I mean lung, liver, or brain.

Essentially, metastatic breast cancer is an incurable, terminal disease. And there are ways to slow down the progression. But on a day-to-day basis, knowing that you live with cancer in your body is very hard. It is a daily exercise in patience and gratitude in taking care of yourself, in reframing how you think about life. Because living with a diagnosis you know is eventually going to kill you is not a very pleasant thing.

Also, people who have metastatic breast cancer cope with fatigue. They deal with multiple side-effects. As you can see, I have got a little hair growing. It is because I am on a particular medication that doesn’t cause hair loss. But my scans may show progression, and then I will get transitioned back to chemotherapy. And I may not have hair again. So having hair or not having hair has nothing to do with whether a person is doing better or not. It just means that they are on a particular kind of treatment that allows a person to have hair.

For example, when I was on Ibrance for nine months, I had my hair. I didn’t lose any hair because Ibrance or palbociclib is a very targeted treatment, and it doesn’t cause hair loss. Then I ended up with IV infusion chemotherapy with Taxotere. That causes hair loss. So I had lost my hair again. Now I am on Xeloda, which is oral chemotherapy. And I get to keep my hair or at least grow them a little bit.

The reason I am talking about this is that people who don’t have cancer really don’t want to hear about terrible cancers. And people who have had breast cancer don’t want to think about becoming metastatic because it is terrifying. The return of cancer is emotionally stressful, scary, and devasting, especially to a young person.

Nevertheless, all of us must come together to advocate for more research funding for metastatic breast cancer. When there is a cure for metastatic breast cancer, it will no longer be scary. It is not the fault of the cancer patient if her cancer returns or spreads to multiple organs. It can happen to anybody, irrespective of the initial stage. Patients do everything their oncologists tell them to do, and still their cancer returns. It is the nature of cancer to mutate and recur.

The most famous celebrity example is that of Olivia Newton-John, whose cancer recurred after 20 years. Some cancers are very slow-growing and may recur after many, many years. Or some cancers respond to treatment completely and never come back.

Today, on Metastatic Breast Cancer Day, it is important for us to learn about metastatic breast cancer so that we can join together and push for research into cures for stage 4 cancer, or at least into treatments that can stop the progression of metastatic cancer.

I have friends whose cancers are not responding to treatment, and they are now transitioning to palliative care in hospice. It is tough because, in terms of statistics, we lose 40,000 women every year to metastatic breast cancer. That is, 113 women lost every day to breast cancer. That’s a significant number. As a community, we need to do better.

I appreciate you listening to me and learning a few things about breast cancer.

Thank you so much.

 

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:

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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.

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