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When Time Is Not On Your Side

A big part of dealing with an incurable illness is a sense of grief and an acute sense of shortened longevity.

One may argue that people die every day so no one has a guarantee in life. Fair enough!

But do you not save for retirement? Maybe not, since nothing is guaranteed, maybe spend it up, live a little? stop planning for the future?

Take each day one by one but not plan any savings.

Give up long-term dreams of travel because there is nothing certain.

Do you not think about seeing your children grow up or that is something that doesn’t matter?

Do you not dream of working and then retiring and relocating to a place of your dreams?

Do you not wish to see your kids graduate, married, and have grandkids?

Do you not want to be there when they need you as they get older?

Being there every step of the way for your spouse?

We all plan these things. That is part of life.

In that context even a 15-year survival ( the number I hear a lot) is still a huge adjustment, is it not?

I am thankful for each day, but it’s an adjustment to my new reality. A grief process, not lack of hope, not negativity.

– Uzma Yunus, Facebook post, March 17, 2016

[To read my approach to publishing her Uzma’s unpublished work and her posts on social media, read this. Featured photo by Eric Rothermel on Unsplash]

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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.

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The Hardest Thing About Grief

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

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

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

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

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

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

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

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

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

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Random Thoughts About Planning A Funeral

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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There Is No Shame In Loss

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

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

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

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

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

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

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

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

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

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

 

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First Flight Without Uzma

As we settled into our seats on the plane, Gauri said, “Our family is sitting together for the first time.”

“What do you mean?” I asked.

“I mean Mama is not with us. So no one has to sit on the seat there.” She pointed sadly across the aisle.

We were in a plane with 3 seats on each side of the aisle, heading to Boston to visit a friend. It was a trip that Uzma and I had really wanted to make last summer, but never could make it work because of cancer.

Sometimes I felt guilty saying we couldn’t visit someone because of cancer. It’s not like we didn’t travel at all during Uzma’s last year. We took a trip during the kids’ spring break. We also went to Niagara Falls on the fifth anniversary of Uzma being diagnosed with cancer.

Originally, Uzma had planned to celebrate that milestone in New York City with a couple of breast cancer survivor friends. By the time the day drew near, she knew she wasn’t really feeling well enough to coordinate anything with friends. Less than a month before the Niagara trip we had found out that yet another treatment regimen had failed her. We ended up planning that break for the falls just 3-4 days before.

This is what I remind myself when I feel guilty about not visiting people who mean a lot to us in the last few years. Cancer, it’s treatment, and side-effects of treatments kept us from making any plans with friends and relatives. It felt easier to make last minute plans by ourselves.

When traveling on a plane with 3 seats on each side of the aisle, we had seen families of four split up a couple of different ways. Either they would sit two by two, usually in back to back rows. Or they would split up across the aisle. We preferred to sit in the same row. That meant one of us — Uzma or me — sat across the aisle from the rest of the family.

Now that it is just the three of us, our amputated family sits together. How will we manage traveling on a plane with only 2 seats on each side of the aisle? Will there be an argument about who gets to sit with whom? Deciding not to worry about that now, I started thinking about life without Uzma.

This was the first trip ever without Uzma. You could tell. I thought I had managed to get us all packed and ready on time. As we settled in on the plane, it dawned on me that I hadn’t taken anything to keep the kids busy. Uzma always used to make sure they had enough activities to stay occupied — books to read, books to color, sheaves of loose paper, pencils, coloring pens, and pastels. You name it, she would pack it. There was no chance of boredom. I had packed nothing. Zilch.

Fortunately, the plane had a screen for each seat. It had a decent selection of kids movies to choose from. That made the 2-hour flight really fly.

Not really though.

There was a stranger across the aisle.

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More Reflections On Hospice Delayed

Reading the comments on the post about how hospice could have started earlier than it did for Uzma and why that was important, I find myself thinking more about our experience.

Why Patients Don’t Bring It Up

The first question that pops in my head is, how come both of us — Uzma and I —  being physicians, we didn’t think of hospice earlier? Why should it only be the oncologists’ responsibility? We were physicians. We have many physician friends, even friends who are oncologists. Uzma had acceptance of her mortality. She had pushed through to get a palliative care physician. Yet, we didn’t see it then, as I see it today. There are two reasons why bringing up hospice has to be the oncologists’ responsibility.

First, even the most unflinching-from-death patient has ambivalence about it. There are many unfinished projects. For Uzma, our young kids were an unfinished project like no other that contributed to us being in two minds. At one point in September, she said mournfully, “I have become completely worthless. I am only a burden now. I should just die.” How does a caring husband respond to this? I said, “I couldn’t disagree more. Your mere presence in this home is a blessing for the kids. See how the first thing they wanna do every day when they return from school is to sit with you?”

I look back at that interaction and realize how it could create pressure for a patient to keep going on. But I don’t think any family, while caught up in the struggle of terminal cancer, can avoid responding in some version of what I said. No family member is going to say at that moment, “You are right, you are just a burden. Let’s talk hospice!” The struggle between acceptance and denial played out in our minds every single waking moment of our lives since Uzma’s stage 4 diagnosis. Sometimes even our dreams were taken over by that struggle. It’s also not the responsibility of friends — even the friends who are oncologists — to bring up hospice in that circumstance. They were our friends, not our doctors. Their primary role is to support us, not to lay out treatment and end-of-treatment options.

The second reason has to do with the difference between what oncologists know and what patients and families don’t know. Based on my experience in my specialty, I suspect that seasoned oncologists know when a stage 4 cancer patient’s illness and treatment has reached a phase where the odds of recovery/remission with the next best option are too low. Patients and their families don’t have the same information. The oncologists also know — or should know — everything that hospice means.  I am a physician, and I knew hospice as comfort care, not a death sentence. However, until Uzma began hospice, I didn’t realize how much comfort hospice provides, how much life-draining activities it helps avoid. See The Hospice Way To A Good Death for a description.

A hospice nurse commenting on the blog post about hospice delayed says something that captures this:

…I see and hear this every day with my patients I care for in a hospice. And I hear repeatedly “If we would have only known the care we would receive and the focus on living out whatever time we have left with comfort and quality of life, we would have chosen hospice much sooner”

Oncologists Don’t Delay Hospice Purposely

Another comment, this one on a Facebook wall where  Price Of A Bad Metaphor was shared says:

…I worked with hospice for almost 20 years and clearly, most hospice patients come too late to reap the rewards of the care. Please tell me you don’t believe it’s because oncologists are making money on the suffering patients.

Actually no, I don’t believe that oncologists delay hospice purposely to make more money. It is true. Money can create unseen incentives. However, given the known shortage of oncologists, they don’t have to worry about growing their business. They are incredibly caring people. You couldn’t pay most of us enough money to take care of as many terminally ill patients as they do. Uzma’s oncologist was brilliant, kind, compassionate, with great bedside manner and Uzma and I hadn’t the slightest doubt about his expertise regarding treatment choices.

It’s not the profit motive, but the culture of modern America and modern American medicine that is to blame. We have become too enthralled by the technological aspects of modern medicine. Yes, modern medicine is doing amazing things every day. Read about Gleevec® and Sovaldi®, and you will see what I mean. Every truly revolutionary treatment creates hope the next new medication could be them — the next revolution. Most new treatments, whether for cancer or for any other condition, just aren’t revolutionary. They may prolong life by a few months, but that’s it. And, all of them come with serious side-effects.

Though vaccine-refusal and the opioid epidemic might yet change this, the dramatic decreases in mortality over the past 100 years means that all of us — and oncologists are also us — have become uncomfortable talking about death. Oh, we can speak of death in the abstract, alright. But we don’t know how to talk about it with people who are dying and who we care for in some way. We all need to get better at this, but oncologists, who treat so many dying patients, have a particular responsibility to get better at this.

Oncologists Are Not The Only Ones With The Bad Metaphors

Oncologists’ use of the chronic disease metaphor in terminal cancer sucks. As another individual wrote in a comment:

…My Oncologist repeatedly uses this comparison for my Multiple Myeloma diagnosis. Looking at the data avg survival is five years, and I am only 37. I think this is very confusing for my family as it makes them feel that this diagnosis has not significantly shortened my life.”

How terrible for this commenter. Oncologists need to stop using this metaphor.

However, as another commenter pointed out, they are not the only ones using a bad metaphor:

Also the battle metaphor. Not only because it seems to indicate that some didn’t fight hard enough, but also because that fight overshadows the good that can come with focusing energy on the things important to you.

And the people most responsible for the battle metaphor patients, families and advocates. Every battle has a winner and a loser. Stage 4 cancer, by its very definition, has a 100% probability of a foreshortened life. Nobody wants to be a loser. So, to the extent that one keeps buying into this metaphor, the death conversation is not likely to come up.

Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 181 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.

 

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Hospice Delayed Is The Price Of A Bad Cancer Metaphor

Loss and grief inevitably make one look back, as if in the rear-view mirror of a car and wonder, “Is there something that could have been different?” Some of those backward glances are just about wishful thinking. Others are meaningful with lessons for all involved. Thinking about what Uzma would have wanted her readers to learn from her experience leads me to write this. I write not from a place of anger, but from a place of hope, where my sorrow can benefit someone else. I hope this reaches all oncologists.

Uzma The Fearless

It is December 2018. Both of us know what’s coming. But gloom descends on Uzma and me when she is referred to hospice. I call my parents to inform them. They are crying. My father recounts a conversation from the summer of 2016 when he and my mom were visiting us. He says, “It was just Uzma and me, sitting at your kitchen table.” I imagine the scene. I am upstairs, working from home. The two of them are sitting at the round table in one corner of the kitchen. The afternoon sun is filling our kitchen with natural light. Uzma and my dad are drinking masala tea.

She tells him, “I don’t know what you know about my illness, but my prognosis is not very good.” He tries to say to her not to talk ill about herself. And she interrupts him politely, “No, I am realistic. My cancer became stage 4 in February 2016. Looking at the data available about what I have, I am not likely to make it past February 2019. Any day after that month will be a bonus.”

Uzma expected honesty from everyone and almost brutal honesty from herself. Her social media posts are a testament to this. In March 2017, she wrote a very brief post on Facebook.
I am not sure whose quote it is, or whether she modified another quote to make it her own. But that is who she was. Like Dumbledore, always insisting that we must name what we fear most. Later in 2017, more than a year after that conversation with my father, in December 2017, she writes a post Prognosis: Three Years Average, that shows that 2019 is still very much on her mind. She talks in that article about being feeling ill-prepared, tired and yet hopeful. But always realistic. I always said she was an astute and skilled physician. She didn’t make it past January 2019.

Things Start Falling Apart

As I look back upon the final months of Uzma’s life, I think that despite her unflinching realism about her prognosis, she paid a heavy price for the tendency among oncologists to reassure stage 4 cancer patients by comparing it to a chronic disease. In medicine, the term “chronic disease,” usually means a condition such as diabetes, high blood pressure, and high cholesterol, conditions that are managed or controlled but not cured. It is ludicrous to compare stage 4 cancer to chronic disease. Half of the women with stage 4 breast cancer die within three years of diagnosis. Only one fifth make it past five years. I believe that using this inappropriate metaphor makes oncologists convey a false sense of hope and delays conversation about hospice.

Between February 2016 and June 2018, Uzma tried multiple medication regimens for her cancer, none except the first one working to keep the disease from progressing for more than 3-4 months. She knew where this was going. By late 2017 she had started seeing a palliative care physician of her own accord. By May 2018, her body starts to show the signs of breaking down under the onslaught of cancer and chemotherapy. Cancer is like a rebel army — it hides in this organ or that. Chemotherapy is like cannon-fire. Whether ultimately successful or not, it destroys a lot more than just cancer. The coveted status of NED or NE(A)D — No Evidence of Disease, or No Evidence of Active Disease — forever eludes Uzma.

Uzma develops significant neuropathy — her nerves are damaged. It causes tingling, numbness, and pain in the tips of her toes and fingers. The insensitivity of her fingers makes it impossible to continue making jewelry, something she enjoys doing with our daughter. Eventually, pencils, brushes and other art tools start slipping out of her hands, and she gives up all art. Her handwriting suffers. Abilities that bring her so much joy are suddenly no more.

In June 2018 she starts having falls. In July, while I am out of town, she falls in the early hours of the morning. She can’t get up by herself. She lies on the floor for a couple of hours until our son wakes up. He helps her get up. It is no longer just neuropathy, and she is also becoming weak. One more medication regimen has failed. She is given a break to help recover a bit from the neuropathy and the weakness before starting the next regimen.

Around that same time, we hear of an immunotherapy trial at the National Cancer Institute, which had worked for a woman with breast cancer in the liver and the rest of her body. She was given three months to live. With immunotherapy, she became NED.

We reach out to the doctor running the research study of that immunotherapy. We send him all the requested records and wait with bated breath for his decision. He calls back and says, “You do not qualify for this trial. The burden of cancer in your liver is so much that you could not tolerate this experimental treatment. If you were my wife, I would not put you in this trial.” We were disappointed. Uzma’s oncologist knows about this.

What Could Have Been

Hindsight is 20/20, but I believe that her otherwise brilliant, kind and compassionate oncologist failed her at this moment. And I think that using the stage 4 cancer to the chronic disease metaphor is what caused this failure. It is in July that conversation about hospice should have begun. I don’t think Uzma would have agreed to it then. But by August, her next chemotherapy regimen had caused her significant anemia requiring her to have three blood transfusions. That treatment too was stopped.

During her second blood transfusion, Uzma wearily says to me, “I think my body is finally giving out. I want to stop treatment. I am tired of living like this. We spend so much time coming to the clinic to get treatment. Then we coming again for treatment to deal with the side-effects of treatment.” She looks exhausted. I reply in the only way I know, “I know you feel that you have to keep going for my sake, for our kids’ sake. But I don’t want you to suffer anymore. You know your body best. If you decide to stop treatment, I just want to say, you don’t need to keep suffering to prove that you love us.”

Had the oncologist begun the hospice conversation in July, he might have said now, “I am sure you are frustrated that we have to give up on treatments far too quickly due to their side-effects. We had briefly discussed hospice in July. Have you given it more thought?”

In September her scans show a continued progression of her disease. She needs a cane to steady herself while walking. Stairs become a challenge. By October Uzma needed a walker. By November, we were regularly using a wheelchair to move about the hospital. Uzma, the unflinching realist, would most likely have chosen hospice in any of those 3 months if the discussion about hospice would have begun back them.

When hospice ultimately began, it was an immense boon. Had it commenced in July, Uzma would have avoided about 30 trips to downtown Chicago, each involving about 2 hours of roundtrip commute and about 6 hours spent at the hospital. She would have had two fewer CT scans, one less MRI and one less bone scan. She would have avoided about 25-30 needle pokes and three blood transfusions.

Had she turned to hospice in September, she would still have avoided 2-3 months of futile treatment and the hardships it was to bring without benefit. Some of those needle pokes, chemotherapy sessions, blood transfusions, and long commutes would have been avoided. She would have had avoided a lot of the fatigue that comes with such treatment. With the time and energy saved she might even have finished the portrait sketches of her kids that she wanted to complete. Maybe she would have finished writing the little notebooks for each of them in which she had begun writing personal messages for them. She might have done a book signing or two, or just taken more selfies!

Undoubtedly, experienced oncologists like Uzma’s know when a patient’s disease has entered a terminal phase. I believe the conversation about hospice needs to begin long before it enters that phase. Uzma’s oncologist had only one earnest conversation about hospice with Uzma — the day the decision was made to end active treatment. At that moment, Uzma’s liver could no longer bear the burden of cancer and its treatment. I believe it is the cruel use of the metaphor of chronic disease and the false hope that it creates for the treating physician that led to this outcome.

If oncologists can’t bring up hospice early enough even for fearless patients like Uzma, they have only themselves to blame if patients equate palliative care with a death sentence.

I am not saying that oncologists should not try to reassure patients and families. But they need greater awareness of the price paid by patients and families for using the chronic disease metaphor for stage 4 breast cancer. This metaphor probably lulls the patient and family into thinking the body can handle more than it can and delays the conversation about hospice. I hope that one day, the state of treatment for  Stage 4 breast cancer will be like diabetes, or even HIV, a once-dreaded infection; today over 80% of 20 year-olds diagnosed with HIV can expect to live past 44 years with treatment. But that day is not here yet for Stage 4 breast cancer. We should stop pretending otherwise.

Using The Metaphor Correctly

Dale Carnegie once said, “Any fool can criticize, condemn and complain – and most fools do.” So what would I have oncologists do? I think it is reasonable to say to the newly diagnosed Stage 4 breast cancer patient that, “We have many treatment options available for stage 4 breast cancer these days. We will begin with the treatment that is most likely to be effective while minimizing side-effects and gradually move towards treatments that have increasingly bothersome side-effects. We have no way of knowing ahead of time which treatment will work to stop your cancer from growing. But once it does stop growing, or goes into remission, our goal then would be to treat your cancer as a chronic disease like diabetes, to be controlled and managed indefinitely.” That’s the only proper way to use the chronic disease metaphor in stage 4 cancer — as a faint hope, not a current reality.

If the patient were to ask, “What if it never stops growing? What if it never goes into remission?”

The honest oncologist would respond, “That is still the more likely outcome, but if that were the course of your illness, we would want to balance the quality of life with its quantity. If remission were not your fate, what would be your biggest concerns about what you want to accomplish in the time you would have?”

It would be the start of an ongoing conversation about hospice and the patient’s values and desires.

Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 180 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.

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The Hospice Way To A Good Death

My wife Uzma died peacefully at home. She hadn’t taken any painkillers for three days. Our kids, my parents, and I were next to her. In the weeks leading up to her death, she was visited by many old friends. Many new friends, whom she had never met, sent her flowers, cards, food. It was a good death. Yes, for the last five years, cancer and its treatment took a physical and emotional toll. Yes, she left us a lot earlier than she deserved to go. Yes, the kids are young.

Nevertheless, it was a good death. There are few among us who wouldn’t want her end — pain-free, at home, with loved ones near. None of it would have been possible without hospice.

Uzma chose her palliative care physician long before hospice. While Palliative Medicine physicians are affiliated with hospice, they try to improve the quality of life of patients even before the patient ever needs hospice. When Uzma was referred to hospice, I knew what hospice meant — that now the focus would be on comfort care. But I didn’t quite understand then the incredible, warm, enveloping embrace it provides to the dying and their family. A referral to hospice is not a death sentence. The death sentence was the diagnosis of the liver metastases. As Uzma wrote previously, the prognosis of metastatic breast cancer is three years average. Hospice merely ensured a comfortable dignified dying process.

Every single hospice appointment was at home. The nurses who came 2-3 times a week. The doctor who came every couple of weeks. The physical therapist, the social worker, and the chaplain, all came home. They met Uzma in whichever room she was at the time. Though they had their professional tasks to complete, they met with Uzma for only as long as she wanted to.

But for going to the hospital for paracentesis — the procedure of draining the fluid that accumulates in one’s belly when the liver gives out — Uzma wouldn’t have had to leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put in a catheter in the belly, a tube through which the nurses showed me how to drain the fluid once a day, if necessary, to keep Uzma comfortable by keeping her belly from distending.

There were no unnecessary interventions. No lab tests whose results wouldn’t change treatment. No medications that wouldn’t provide comfort. One of the first things we received from hospice was a comfort medication kit to use to alleviate symptoms that can accompany dying. They included drugs to help with agitation, anxiety, pain, and respiratory secretions. No running to the pharmacy for medications, either. They were all delivered to home. The physical therapist who came home said his goal was to ensure safety and comfort. So he taught me how to help my wife get out in and out of bed, use the bathroom, sit around and ambulate in a manner that was safe and mechanically efficient, i.e., less tiring for her. As I said, no unnecessary interventions.

Had Uzma needed hospitalization for any reason — say, a condition unrelated to cancer that she would survive with treatment in the hospital — she would have bypassed the emergency room and would have been admitted to a bed reserved for hospice patients. Had I needed respite from caregiving, Uzma could be admitted to a hospice bed at a nursing home for up to five days. And the hospice staff would coordinate and arrange everything. We never had to use these options, but just knowing they were there gave comfort and peace of mind.

Two of the most emotionally essential services that hospice provided was a chaplain and a social worker specializing in counseling children about death and dying. The visits with the chaplain were among the longest Uzma had with any of the hospice professionals. The social worker provided some excellent tips about helping kids. Both the chaplain and the social worker provided incredible emotional support to Uzma and us.

Then there’s the equipment that hospice provides. We already had a cane, a walker, and a wheelchair. But if we didn’t have those, hospice would have provided one or all of those. Eventually, hospice provided a commode so Uzma could go without having to go to the bathroom. But the most important and most used thing that hospice provided was a hospital bed.

Uzma had decided long ago that when the time came for the hospital bed, it would go next to a large window in the living room that faces the front of the house. From our bedroom window, one can only see the back of other homes in our neighborhood, and they alleys separating them. In the front, there are trees. She could see people as they parked their cars and walked up to the house to visit her. Most importantly, she could see our daughters’ bus stop. And watch her board and exit her bus from where the hospital bed. That’s the main reason she had chosen that location for the hospital bed long before the bed came. The second most important reason was that she did not want to die in a bedroom, where people go to sleep. She wanted to die in a living room, where people live and meet.

Hospice was available 24/7 to consult about any difficulties Uzma was having. Those phone calls were always reassuring. When she died on the coldest night on record in Chicagoland, the hospice nurse came within an hour to examine and pronounce her dead. He also called the funeral home to notify them of the death. He gave us a heads up about our next steps that night with the funeral home.

Hospice didn’t stop all suffering. It didn’t stop the pain. But what it did for us was priceless. Without hospice, Uzma would not have died at peace, at home, without pain, and surrounded by family. She would not have died in the room where she wanted to die — our living room.

[If you liked this post, you might also like its companion post How A Doctor Chose Her Last Doctor. Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About 3 months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 178 reviews, all 5-star, on Amazon. This blog is now maintained by the author of this article, Dheeraj Raina.] 

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Chasing Life After Cancer

Ever lost a balloon as a kid? I did. I remember the sadness and grief as the wind blew my balloon and the string slipped out of my hands and it floated in the air, gently swaying and waving a sad goodbye.

Just like any other kid, I ran after it but as the distance between the balloon and me got more and more, the realization descended that it has slipped away. It was still soothing, though, to see it blow farther and farther away till I could see no more.
That’s exactly the kind of despondence I felt about life when I was first diagnosed with cancer. My “normal” life seemed to slip from my fingers, the string pulling away and the distance suddenly too far to bridge. As the gap between the balloon and me widened, I held on to hope, a completely conscious willingly-drummed up hope that if only I run fast enough, I will catch up. I bluffed myself. I tried.
Then a wind gust intervened just as my delusion of catching up seemed a reality. And there it was, rising in the sky, away from me. Obviously a lost cause, but I still wanted to see the balloon rise away until it was no longer visible. I kept my eyes on it, squinting to see how far it goes and when exactly does it cross the line from here into “nowhere”.
That’s how living with cancer is every day.
We, the ones with cancer, chase the balloon every day.
We watch others with their balloons, securely fastened to their wrists. We see their balloons, anchored and grounded much like their lives. Manageable, and in control. While we drift and sway moment to moment about the uncertainty of our lives. Negotiating our lives as well as we can, we try and keep up.
Then, someone will ask…
So how do you live with cancer and facing your mortality?
Well…How long is life supposed to be?
How does one measure a life well-lived?
Does anyone really know how long it will be?
How many birthdays am I supposed to have?
Birthdays much like time, are linear. They aren’t dimensional like weight or volume. The weight of the year when you were first diagnosed with cancer is much heavier than a year of optimal health.
The volume of the year your child was born is far greater than any other year when your life expands in ways you hadn’t imagined.
Time is an inadequate measure of life and age is just a number, without a pulse, breadth or imagination.
How do you quantify the depth of love experienced or the haunting intensity of languishing sorrow?
The infinity of the pleasure of being in the arms of whom you love, the warm hugs of your daughter or the pat on the shoulder from your dad is irrelevant to the number of years experienced.
Living with cancer is a lesson is acceptance, adaptability, and reassessment of what one calls “life”.
And you gaze at the sky periodically to see if you can still see the balloon riding the wind. You console yourself, gingerly moving in life taking baby steps. Two forwards, one backward, as long as you keep walking.
Some days the dark curtain falls, the visibility is low and the heart fills with so much sorrow that it feels it will burst open with the sadness it can no longer contain, yet it doesn’t happen. Then you hear a balloon pop. You realize, nothing is certain in life. The air is still there, just outside that small colored inflated balloon. That air still surrounds you.
You breathe. You distract yourself. You count blessings. You smile.
You look around to harvest strength, from a hug, a kind gesture or a gentle prayer.
I often hope that this time when I close my eyes, for sure this will all be a bad dream. But it doesn’t, it lingers and it stays, afloat in the air that so many times is so hard to breathe.
How do you survive?
You try to maintain the balance of life. The balance that is hard to keep, on the scale that is rigged in favor of fear, sadness, and disappointment, yet you still stand there hoping for a fair outcome.
Because everyone gets just one balloon.
Your only chance.
So, you accept your fate with grace. You make everyday count. You get numb to many fears. You put more life in each day. You value moments more than hours. You hold on to hope and faith. You use denial on days when courage is lacking. You smile so you don’t forget how it’s done. You wish and you believe. You cry aloud but you laugh even louder. You hurt and you heal and then you hurt some more. You keep trying!
You keep trying because you don’t wish to be dying of cancer. You live with it and you live despite it. Your fight for the soul that must not die, bit by bit, inside the body that betrayed you so cruelly.
You live as if you are, alive wholly and completely until the day that you truly die.