Yes, I felt un-feminine and ugly that morning. I felt sad. The night before, I had shaved a handful of hair still on my scalp after two cycles of chemotherapy.
I was unsure if I would have hair again in my life given my diagnosis of stage four incurable cancer. I wondered if I would die bald, I asked if I was done with having hair forever. With those thoughts, I had grabbed my husband’s electric razor and shaved off my hair.
It needed to be done. Fall had arrived on my scalp, and I needed to accept. The next morning I looked at myself, trying to accept that I am bald once again— the second time. I had few eyelashes. My eyebrows were just faint shadows of their former selves. My body, used to being toned and fit, was anything but. All around, I felt ugly and undesirable. I thought about the toll cancer had taken on my body and how much, bit by bit, it had stolen from me.
In my anger and rebellion, I got dressed, pulled out my makeup kit, and started to use it. I put on fake lashes, painted brows, and put on a bright lipstick. I told myself, “Even if I feel ugly, I won’t look ugly.”
An hour later, I was taking selfies all over the house.
Sometimes, it’s not easy to accept life the way it’s unfolding ahead of you, but I have found that it is necessary to stare back at it and give it a good scare. And yes, I may have felt ugly that day, but I made myself pretty. And yes, external beauty is superficial, but it does matter, or there wouldn’t be a multi-billion-dollar beauty industry.
I wanted to share this because I want you to know that I am not impermeable, There are many times when I feel very vulnerable. I just end up fighting back. I get up and try to fix the problem I face.
As the psychiatrist and author Elizabeth Kübler-Ross once said,
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and deep loving concern. Beautiful people do not just happen.”
Here is the picture from the day I felt ugly!
[Commentary by Dheeraj Raina: This was Uzma’s Facebook post from July 9, 2017. Cancer does things to the body that make one feel ugly and undesirable. Uzma strongly believed that what we do with that feeling is up to us. Looking is good is not enough to feel good, but it helps. And a person’s beauty is not in the length of her hair, the shape of her nose, or the complexion of her skin. Instead, as Uzma showed us, beauty lies doing the best one can, in maintaining grace under pressure and smiling no matter what.
In this post, for the sake of clarity and readability, I have made a few changes in word selection and multiple changes in punctuation and formatting. To read my approach to her unpublished work, read this.]
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.]
“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.]
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.]
[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.]
[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.
It seems having cancer puts you at higher risk for blogging, breast cancer even higher. Or perhaps with a cancer diagnosis emerges a need to talk or find an audience, a team or group to listen. The need to be heard is a pretty basic psychological need, unmet in many cases but I guess having cancer gives you some authenticity about knowing life and its ups and downs, so people will listen.
I listen, listen a lot, it’s part of my job and has now become second nature, I hear about very personal things, intimate thoughts, even thoughts that people are unwilling to admit as their own.
What makes it useful is the feeling of being heard. That someone out there understands what you are going through.
[Commentary by Dheeraj Raina: This is a previously unpublished post of Uzma’s. To read my approach to her unpublished work, read this. Uzma had left the draft of this post untitled. I see it as a complementary to another previously unpublished post Why I Keep Writing. That’s why I chose this title. Besides that my contributions to this post include fixing punctuation and making paragraphs for comfortable reading.]