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.
I appreciate the honesty of what you say. I think our culture is very afraid of letting go, of allowing our bodies to run their course. When you noted in the post that if Uzma had started hospice sooner, she would have possibly finished the notebooks for your children or their portraits that she was working on, it really dimensionalized for me the cost of not ending therapy. What point is there in getting bloodwork, and all those procedures when the prognosis is that none of them are really helping and she could have instead been enjoying the time she had left? I have attended a lecture by Atul Gawande and also have read his book Being Mortal, which shares his insights into how the US medical system has truly failed our ability to allow people to die with dignity. I appreciate what both you and Uzma are sharing by providing your very honest insights into the end of life. Having had breast cancer, I think of recurrence often, and I wonder and hope I would have the ability to face it with the dignity and truth that Uzma did. Thank you for keeping her blog alive.
Being Mortal and Man’s Search For Meaning were Uzma’s favorite two books in the last 5 years.
Thanks for sharing your thoughts.
I just received her book in the mail today. I’m anxious to read it. This topic is so close to my heart because my mom fought this disease for 36 years. She was one of the fortunate ones that basically went into remission for 31 years although she was on some form of treatment that entire time and endured 2 other totally different cancers although they were probably treatment-related ( endometrial cancer and Non Hodgkin lymphoma), and she experienced vascular disease caused by all of the radiation. (She had an arterial occlusion in her chest and experienced a stroke in the vertebral artery-both were in locations that had been previously affected by radiation) After 31 years the disease reared it’s ugly head again and she fought hard for another 4 1/2 years until her body just couldn’t endure any more treatment. She started palliative care about a year before she died and hospice 6 months before. She died 3 months ago. I wish I’d known about this FB blog before then but glad to have it now. I’m sorry for your loss….your wife was so young. I’m glad you’re keeping her memory alive in this way.
Donna, I’m so sorry for your loss. I’m sorry your mom suffered so much, even during the years that her breast cancer was in remission. I hope her memories will be blessings that bring joy and solace to you forever.
Your words to oncologists are so on point. I am a fellow psychiatrist who worked for many years in an oncology setting. I also lost both parents to this disease, and my mother (also met breast cancer) suffered greatly at the end from too much chemo for too long. My dad ( pancreatic cancer) was fortunate to have a caring primary care who advised him not to have chemo, and he did not suffer it’s brutal effects. The whole “battle cancer” and push on positive thinking ethoses are maddening and you illustrate clearly how destructive they are. In your case, they robbed your precious wife of quality life during her last year.
I’m so sorry for your loss. Thank you for continuing her blog and bringing a similar wisdom to your posts. Please consider publishing at some point a book for oncologists, cancer patients, and those who love them that bring these points together. Many blessings to you and your family.
Thank you for taking the time to comment. I think most of us, in our roles as terminally ill patients or their family members, have no clue about the benefits that hospice provides. I knew hospice as only comfort care. But until experiencing it, I did not realize how much comfort there is in it (I wrote a post about that too).
I am so sorry for the loss of your wife Uzma. But I want to thank you and your precious wife Uzma for this delicate truthful insight on living and dying with this terrible disease. I am a hospice nurse and have been for 13 years , my own grandmother died of pancreatic cancer at 81 years of age. My sister died at 33 of ALS. Both had hospice services. My sister benefitted greatly from her hospice care. My own grandmother only had hospice for a short time, because as in your story, she was given hope, and also told her cancer was chronic and that with trying different treatments she could have more time with her family. My grandmother suffered much longer than she should have, and her quality of life was not good. Even her own grand daughter being an experienced hospice nurse could not sway her from what the oncologist told her. She put all of her hope and trust in him. He also is a good, kind hearted doctor, but as in Uzma’s experiences, he could of and should of spoke about palliative care and hospice from the beginning. When he knew her cancer was not curable. I see and hear this everyday with my patients I care for in 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 chose hospice much sooner”, not only does hospice care for the actual patient but also the patients family. I absolute agree that this letter should be read by oncologist, but also by all doctors and all training to be doctors. (And anyone else in the medical field quite frankly). I understand doctors are trained to heal all patients, but should also learn to recognize when the focus no longer needs to be on healing as in curing a disease. But healing as in giving the tools needed for the best quality of life when the disease is no longer curable. So many patients and families are robbed of precious quality time together. This is a tragedy. Praying Uzma’s words reach the mass of people that need to hear them. Many blessings to you and your family.
Thank you for your detailed note. My condolences on your loss and thanks for your blessings to us.
Very good post. Uzma was lucky to have you. I wish every cancer patient, and every oncologist would read this. I will share it with mine.
Thank you for taking the time and effort to comment. We need to make every oncologist and every patient think about this. For patients and families, my post – “The Hospice Way To A Good Death” – about the extent of comfort that hospice provides may be an eyeopener.
As a Board Certified End of Life Chaplain, i wholeheartedly concur with both you and Uzma. I have been with a stage 4 cancer patient whose burden was so palpable that i wanted to scream at her husband every time he said she was a “fighter”, and to leave us alone so we could talk. He never did either, and it broke my heart; her need was great.
And i will not talk about the stage 4 orthopedic patient who wanted no treatment, which her oncologist said would begin the next morning. He didn’t care that she had prepared her plans for the rest of her life the day before with me, after getting her diagnosis when she was alone in the ED. And i lost my job for prophetically asking why he had not listened to his patient. Yes, the paradigms must change and only the MDs can do it; the rest of us are flotsam.
Thanks taking the time and effort to comment. I am sorry that you have been in positions where your professional expertise has been disregarded by my tribe — physicians. For the sake of those among us who will be in my wife’s shoes in the future, we have to try to do our part to change this.
Donna, as a Stage IV non-small cell lung cancer patient with no genetic markers, I followed Uzma’s posts faithfully and so appreciate this piece. I am in the same conundrum now, with oncologists wanting to add another antidepressant so that I don’t “make a rash decision about hospice “. I Was told that to enter hospice early (as my chemo has stabilized my tumors) would mean a longer and more painful death. But I now have Leptomeningitis, a ticking time bomb, in my brain.
It is the medical system that cannot face death. Not the patient. Thank you for this perfect piece.
I’m so sorry to hear of your situation. I hope you are able to solve this dilemma in way that is meaningful to you and helps you live your best life possible, however long that might be.
Thanks for, being like me, an Uzma fan!
I am very sorry for your lost. Thank you for sharing this is very eye opening & helpful information. My sister was diagnosed with ocular Melanoma about one yr 6 months ago. Started plaque treatment, but ended in enucleation. She now has liver Mets. She is 53 and has twin 13 year old sons. Her desire is to live to see her sons graduate. I pray daily for good life for her and trust in God. Thanks again for sharing.
Judi – thank you for sharing your sister’s story. I hope she gets to do whatever she wants to do. Best wishes to you, to her and your entire family.
I very much appreciate your candor. I completely agree that calling metastatic breast cancer a chronic disease is not realistic and potentially harmful. Hope can be a tricky thing. But truth needn’t be. Thank you for writing this important post. Keep writing.
Nancy – thanks for your comment. And for sharing this post. I agree that hope must stay grounded in realism.
Hello Mr. “Dr. Yunus’ husband” 🙂
This is a beautiful, well-written, educational piece. Forgive me if I am overstepping but I would encourage you to send a copy of this piece (and others) – to the PCPs, oncology/palliative care physicians with whom you and Uzma worked. Furthermore, I wonder if you would consider sending it in to the online publication: CancerTherapyAdvisor.com?
CancerTherapyAdvisor.com is a free online resource that offers oncology healthcare professionals a comprehensive knowledge base of practical oncology information and clinical tools to assist in making the right decisions for their patients.
It is so important that this information gets to the audience who needs to hear it!
Thanks for the great suggestion, Tracey!
Dear Dr Raina
Thank you both. I too have cancer & almost from the beginning any care medicine could give me was palliative, not curative, & I’m well past the use by date given me by the doctors. So I’ve read these writings (& will read Uzma’s book) with sadness for your loss, but also with gratitude & admiration. You are both remarkable people.
Bless you, Rob
Rob – thank you for sharing your story. I wish for you to have as many years as you want. Thank you, also for reading Uzma’s book. If you haven’t already done so, could you add a review of the book on Amazon? Thanks a lot. I hope her and my writing will continue to add to your life.
I’m happy to write a review for you Dr Raina. Living in Western Australia means it will be a while before the book gets here.
I have however forwarded the links to friends, some physicians among them, and will share this with my oncologist, if he doesn’t know already, when I see him on April 16. I will also pass them on to the Cancer Council of WA.
I note you are a psychiatrist working in the addiction field. I came into AA in 1978 and what I learned there has been of immense help to me in this process with cancer. I might add that after diagnosis I did Google “doctors with cancer” to learn of their approach. That was helpful beyond words. Uzma’s writing on the emotional aspects is brilliant, and I’ll share that with many. I’m sad I did not come across your wife’s journal until after her death. I do thank her.
I have kept my own journal, and if you’re interested am happy to send you the few pages of extracts I shared with my oncologist. If you want to send me an email address I’ll forward them. They are not for general publication, at least not yet, but I’m aware in terms of experience and identification every little helps.
Again, thank you both for your courage and care.
Rob – thank you for telling me more about yourself. It will be a privilege to read your writing. You can sent it to me at email@example.com. I can’t promise when I will be able to get to it, but read it I will.
I’m sorry that the book is not available in paperback in Australia. I have no clue why Amazon can’t make this paperback available there.
I don’t like reading ebooks, but manage to tolerate them in certain circumstances — when traveling, or when the ebook significantly less expensive than even a used copy, or when it the print copy won’t be available for a while.
If you too can tolerate ebooks occasionally, I suspect you should be able to get and read Left Boob Gone Rogue on the Kindle app on any smartphone or tablet. It’s easier to do on an Android phone/tablet than on Apple ones, but if you need help with the latter, I will be glad to walk you through it. I know the ebook is no cheaper than the print version, but at least it is available worldwide, unlike the paperback which is only available in US, Canada and EU.
I like your comment about AA. I find that for those who internalize its lessons always find it helpful beyond addiction. It’s not an easy state to achieve, but the rewards are not insignificant.
Finally, than you for sharing Uzma’s and my work with people around you. I can’t tell you how much that means to me and would have meant to her.