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Holidays and Cancer: some suggestions

A note about cancer and holidays: If you have friends or family who have cancer or had cancer, make sure you treat them extra special. Even those who are done with treatment struggle a lot with energy levels. They may not have the energy to stand in lines at the mall or gift wrap everything nicely. Their gifts might be late or they may resort to just buying gift cards. When cancer strikes , holidays can feel like a burden. If you want to buy them gifts, do consider their situation. Service gifts are excellent like cleaning service gifts, gift certificates to restaurants or their favorite pizza place, hair salon etc. Sometimes, when struggling with energy its hard to deal with handling gifts at all.
Offer to take them out for lunch or breakfast. Offer a day of friendship. Not all gifts are sold at the mall.
Help out with their home, or tree clean up after the holidays.
With cancer, its the gift of time that is most valuable.
Not all cancer patients need cookies and chocolates. A lot of women struggle with weight during cancer treatments. A tower of chocolates or cookies may be the last straw. If in doubt, ask the recipient if there is something they would really like.
If you have them over, be considerate of what they may or may not be able to eat. Again ask if they are having any side effects or food that they can no longer tolerate.
A little consideration and caring goes a long way in strengthening loving relationships.
Many cancer survivors deal with sadness and depression around holidays and fears about the next year. Be patient with them. They may not be feeling the holiday cheer. Don’t push them to feel happy either neither guilt them to feel grateful. Allow them the space to grieve if they need to.
Dealing with Cancer around holidays is complex and exhausting.
All they need is to know that you care and gifts aren’t the only way to show that.
Have a very blessed holiday season.
Uzma Yunus

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To the radiologist who was supposed to read my films…

Hello doctor,

You will probably never meet me in person. Your name will be on the bill my insurance receives from the hospital. Your signature will be on the line after the end of the report as you mumble report after report into the system. You will never know my story. I am my organs to you — organs with anomalies that you have to squint and sometimes lean back to look for. You look for spots that don’t belong in the image and measure whether they grow or shrink over time. A body riddled with cancer. It can be quite challenging to look through all the CT scan cuts, day after day, hour after hour.

Each of those films has a story behind it. Mine has a 40 some year old woman with metastatic breast cancer. A story that starts a whole month before the upcoming scan appointment when she starts to wonder what her scan will show this time. She pretends to ignore those thoughts because her cancer is incurable. She secretly hopes that everything disappears this time. She looks at her young kids and hopes that your scans will not see cancer this time. She hopes that her treatment continues to work. She stays up at night and contemplates various scenarios should things change. She wonders if she will see Thanksgiving next year. She wonders how many more CT scans she has left in her lifetime. She wonders if she can just cancel all her appointments and move to another country and pretend she never had cancer. She then shakes her head and gets busy.

Then the day before the scan arrives, she is more nervous than usual. Kids annoy her. She doesn’t feel like eating anything. All she can think of is the possibility of her life changing after 24 hours. She wonders if she gets another extension for 3 months on her treatment. She barely sleeps that night. She wonders. And thinks.

The next day, she gets to radiology and gets a number. She looks at others who look much older and much sicker. She wonders if that would be her in a few months. She gets called and is rushed off to the changing room. She wonders if her kids made it to school. She thinks of her husband in the waiting room. She changes into her gown. With her clothes, she hangs up her control in the locker.

Then she waits again. Another rushed technician gives her a vat of barium to drink. She sits and sips the barium listening to Anderson Cooper complain. She tries to cope with the nausea caused by her anxiety and barium. Then she sits on the edge of her seat, wondering when she will get called so she can be done with this ordeal.

She lies down in the scanner. She has an IV in place for which she was poked 3 times and was called a “hard prick.” She has a pillow under her knees, and she is slid into a giant device in a cold room. She holds her breath when instructed, letting it go only when told. She hears the machine, and the circular gadget spins around. She is being seen by the technician in the other room, both from inside and outside. She lays as still as possible — still nauseous and anxious.

Then the contrast is pushed, and a bolus of heat travels through her body till it hits her lower body. It feels warm as if she just peed in her pants, but this is her umpteenth scan, so she knows that it is the contrast. She also knows to drink 6-7 glasses of water that day to keep her kidneys flushed. That’s what the nurse who put her IV in told her. She knows that she will later have diarrhea due to the barium she drank. She laments that the goddamn mocha flavor of the barium has ruined the taste of her favorite latte for her.

But she does all this. Just to live, to survive metastatic breast cancer with scans every three months. The machine stops. The IV comes out, and she is let go. She quietly goes back to the locker and changes, tired from this morning of scans. She still has to go to nuclear medicine to get her bones scanned, which will take another 45 minutes at least. Another machine to befriend.

After all those scans, she goes home. And she waits, counting each tick and tock of the clock. It’s hard to distract herself. She could never decide if the bone scanner moves slowly or her life. Twenty-four hours later, her anxiety is making it hard to breathe. Those who love her also wait. Her life is on hold. She wants to sign up for another art class but is unsure if she would be on the same treatment after these scans. She needs to do Christmas shopping, but she can’t get herself to go out. She needs to sign up her kids for classes but isn’t sure how available she will be. She needs to respond to that job offer that came through.

And when she can’t take it anymore, she gets her oncologist paged. He is just a tiny bit short with her. It has not been reported by radiology, he says.

She tries to breathe. There is another night ahead of her while those films sit in your office to be read.

She has cancer, this is her life, and she has to cope.

You must be really busy, you have a life too. But you look at those spots, tomorrow, whether they are bigger or smaller, hopefully, you will ponder what it would mean to her to get those results. You will know what she went through to hear your “impression.”

It is just another scan for you. But when you have read it, she can resume that fragmented thing she currently calls life.

Please, dear doctor, give me my results; my life is on hold.

[On Dec 1, 2020, Dheeraj Raina made minor edits in grammar, punctuation, spelling, and style in this post and added the featured photo by Harlie Raethel on Unsplash]

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Conserving Emotional Energy

I have often through my career as a psychiatrist remarked to my patients, “You need to work on conserving your emotional energy”. Too often, I have heard from patients, I am overwhelmed and tired and can’t think straight anymore!”

While depression and anxiety can become psychiatric disorders needing professional treatment, being overwhelmed is usually something that requires active management of life circumstances.
We either take too much on, don’t get enough rest or down time or are holding on to long term unresolved emotional issues. We currently are a nation of overwhelmed folks, one crisis away from a complete breakdown( if it hasn’t already occurred) . And it is because we have cumulatively exhausted our emotional energy.

Now let me explain what I mean by emotional energy. Emotional energy is the energy that controls the ability of a person to connect with their own feeling without it being clouded by extraneous factors. This is the force that assists us in coping with difficulties and understanding and processing meaningful emotions. We all have a reserve of emotional energy. It is the emotional energy or lack there of,  that in turn impacts our mood and subsequently our behavior.

 Presence of emotional energy is like a soft cushion that absorbs the jarring and daily falls in life and therefore we bounce back.

As we take on more and more and spend less time in self care, this cushion thins out, the less the thickness, the lesser the ability to bounce back and more hurt we feel when we fall. After going through the election season, we are all falling on thinned out cushions. Is there any surprise that our joints hurt and we are short and angry?

We are literally the sum of positive and negative energies driven by emotions. Happiness, contentment and peace add significantly to the reserve of our positive energy while anger, lack of satisfaction and sadness are extremely draining to the reservoir of emotional energy. Even though we have no control over external factors that control our lives, we retain the ability to manage our emotional responses to these agents. A lot of people find refuge in externalizing the blame and finding the person at “fault” to deal with their angry emotions and make an effort to focus the anger on the said party. It may make us feel a little better for a short period of time but it is unable to bring us to a resolution emotionally because that situation and its residual emotions still persist.

Once angry without resolution, we behave like loaded guns responding to any minor provocation as if it were a major crisis. Most people experience unresolved anger as persistent low grade irritability and get annoyed easily. Again the issue is that anger very quickly depletes emotional energy and then we are fall hard and fall painfully.

Disappointment is another very hard emotion to cope with. Disappointment usually comes with a mixture of anger and sadness. It may be a situation or an expectation that did not turn out as we had hoped. This often leads to us generalizing our anger or disappointment on to other situations and instances and an expectation that things will get worse. This apprehension feeds the cycle of fear and anxiety, another duo of emotions that then lead to loss of emotional energy.

In this very interconnected and immediate world of ours, we don’t have space for ourselves. Our minds are flooded with bytes of information that may or may not be relevant to our lives. Our shortened attention spans get in the way of properly processing our own thoughts because someone just wrote an article about exactly how we “should” be feeling after this election.

It is prudent though that we connect with our own feeling about an issue and understand them fully. We cannot do that unless we replenish our emotional energies.

Last weekend, I took a step back from Facebook myself. There was intense affect everywhere. A whirling storm of anger, insults and disagreements and posts about hate crime were flooding in. I do care very deeply about the political direction this election took and now the country will take but at the same time reality of my own life remains vivid. I live in a world of incurable cancer and perpetual treatment with grave uncertainty. Getting through each day is an exercise in positivity.

So Friday I logged off of Facebook . I decided I would not post any statuses for a whole week neither would I comment on anyone else’s . It has been two days. I have removed myself from the duel between the supporters of the two candidates rather I put myself squarely in the middle of my own life. I took a step back to rehabilitate myself emotionally. Being on social media and disclosing aspects of your own life always comes at the cost of vulnerability. Opening yourself to affect of others which is constantly with you can be exhausting. My face book feed was a combination of grief and gloating, of anger and insults, of rational people losing their sanity over petty things and catastrophizing over situations . I asked myself, “Do I need to expose myself to this?”

I love being able to connect with people. I have grown so much by being able to reach and connect with breast cancer survivors all over the world. I have had such opportunity to have dialogues with people about their most intimate thoughts and fears and the honor to help them and sustain them. Social media is an amazing medium. But its toll on emotional energy can be very hard.

With a surgery looming in front of me, a long overdue elective procedure for removal of my ovaries,  I needed to work towards filling up my emotional energy reserve. I have many friends who fill me up with happiness on social media however after the elections, the virtual world was adding to stress, negativity and apprehension, none of those that I need in my life riddled with cancer and its accompanying uncertainty.

Friday evening I sat and chatted for a while with my mother-in-law while my daughter ran her “bakery”. Saturday we had a meal with conversations that had nothing to do with elections and then watch a live show. Sunday was full of errands and chores. Pretty normal weekend activities but the extraneous windows open in my mind were closed. I wasn’t peeking and neither was anyone else. I did have a strange sense of privacy and it felt good. I laughed at my kid’s jokes and not on Obama and Biden memes. And that was alright. Social media is an important part of my life and activism and will remain as such. But I do think it’s great to take a break every now and then.

I hope to return actively on Facebook after my surgery but I wanted to say, that I am glad I am taking this break and I don’t believe that people as wonderful as Americans, are a nation full of racist, bigots and sexist. I will hold on to hope and optimism as long as I can. I hope you can too and I hope that we can all stand together as one to support each other irrespective of color, religion, race or nationality. I hope.

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First Day of School

A family is outside, wishing their fourth grader bye as he gets on the school bus. It’s a crisp Midwest morning, the sun is shining and everything is rich in color and drenched in sunshine. The parents look tired and a little out of sorts while the kids have their backpacks and wonder in their eyes.

The crossing guard has arrived at this spot and parents are relieved to see the same guy from last year. A cheerful and chatty man who waves at everyone with lots of heart.

There is lunch in the backpack and carrots with the ranch dip. There are random conversations about weather and school that have nothing but superficial value.

There is transition and amazement in this day today.

The first day of school.

Families are expecting a return to the routine. The pools will close soon. Activities will start. Classes will begin.

As the bus pulls over, kids line up and there is sudden commotion. Goodbyes and hugs ensue. As kids get on the bus, it slowly drives away.

All moms get back home to finish their coffee and get settled.

One mom sobs profoundly. She cries and she wails in pain. Her husband holds her for as long as she cries. She wants her pain to turn into tears and leave her so she can also finish her coffee and pretend that it’s alright. She is successful in doing that most of the time. But today, she couldn’t.

She is unsure how many of these days she will have.

I don’t know either.

As they say, “Make memories”. I made some more today.

And stay hopeful that there will be another first day of school for this mom.

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The mighty “flu”

I have written a lot about cancer, treatments and the trauma that one has to deal with. But today I write about the Almighty “flu” … not real influenza but the routine upper respiratory infection. It’s an experience that is common to all of us and it is a miserable experience. We all know the sore throat, cold, aching sinuses and hacking cough. This may or may not be accompanied by a fever.

If cancer is the emperor of all maladies, upper respiratory infections are the queen. They make the feeling of misery very common. Everyone has experienced it at one point or the other. Queen grants much more appearances than the emperor does. I have met both.

It follows a typical pattern. You are having a good day and suddenly you just don’t feel so well. It’s hard to articulate what isn’t right but a feeling that you would love to lie down and rest. You don’t appear sick but internally feel that something is a bit off. Few hours later the throat feels like someone grabbed a sand paper and rubbed it nice. Pretty soon the eyes feel like they are a wee bit dry with a little burning feeling in them. And soon enough, all mucosal linings of the head and neck engage in a rebellion synchronized  where they are either secreting stuff or dry as heck . Gradually the burning feeling takes over and oops, there is the fever. Now the entire body is aching and you are sick. It feels like the end of the world but it’s really not and you know it but it certainly feels like there is no point carrying on. I get very depressed with colds. I find it funny that I run around with stage 4 cancer while on treatment or that I worked through my chemotherapies but a cold and 100.4 fever is what gets me miserably laid up.

And because of the cold the nasal septum hurts and feels sore. I can’t stand when the sinuses hurt. It’s a dull malicious pain in the forehead and the bones in the cheek as if your face is pressed into a hard surface. This package of misery at its peak usually lasts 1-2 days and you get surrounded by advice to drink lemon ginger tea and chicken soup. Amazingly hot liquids do help so much, so does a hot shower and a little TLC from the family.

And then you cough, a nasty hacking cough reminiscent of someone at the sanatorium. And with the cough, you feel your brain move and the sinuses that feel full get jostled and the head hurts some more.

And then slowly things get better. Albeit some of us, transition to a bacterial infection and need antibiotics.

We live in this world with many micro organisms and URIs are a gentle reminder that we share this space with others and must be respectful of those we co exist with. We are reminded the facts that size does not matter, the fact that life comes with interruptions and recovery. Its pause and go.

Pause for me. Cancer is treating me nicely for now, recent scan showed everything looked stable. But a little virus has gotten me to my knees.

But then, of course if I can get through 16 cycles of chemotherapy, I sure can get through this.

Here is to Chicken noodle soup and to friends who feel like such on hard days.

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I am sorry I didn’t beat cancer

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago, I didn’t beat cancer.

Every one said, “You are going to beat it,” some said, “If anyone can, you can!!” They cheered me on as I endured one treatment after another and I kept fighting “like a girl.” I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one endpoint — “beating cancer.” Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer.” Except for one open book exam, I have hardly failed at something in life. So why would I fail at this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, I felt like a failure as if I let down everyone who thought I would “knock the shit out of cancer.” I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early-stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer,” the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometimes I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me, and if and how sorry they feel for me. I imagine something to the effect of…“Oh this poor young woman with young children who has this illness that has no cure.”

Me and my metastatic cancer.

I remembered when I was newly diagnosed. The word “metastasis” used to send chills up my spine. I used to dread my Facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived with bone metastasis for 11 years. She gave me hope. But I still would at times try and block her out of my mind for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep, and all the medications and treatments. I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having cancer meant. It meant accepting a life that you have no control over…a life that transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancer kick each day in the butt, and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis) happens, I will be okay.” I celebrated every clean scan and a good oncologist visit, but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry” call from my doctor, and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was no longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate…and I will think of you the whole time.

Forgive me if this bugs you or hurts you. I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer.” I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life, and showing others how to reconcile with stage 4 breast cancer.

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Dispensable Yet Hopeful

I have not written much lately. It may be a sign of my avoidance. Sometimes, writing and talking about cancer is also exhausting. Sometimes, it feels like reliving it and too much of a preoccupation. Cancer has weaved itself into my being and unwilling to abandon me much like the love and support of my friends and family.

And life is a complete package of good and the bad. I work on accepting both simultaneously as I hold on to some and let go of some.
I have been busy with the rest of my life. My family, kids and the new found freedom of not having patients to care for. I miss being a doctor very much but I also realize that being a doctor is not confined to the office. Healing is a 24/7 profession that is also incorporated in me as a person. I just don’t get paid in money for it but lots in kindness and gratitude which are the biggest gifts of all.

Recently I have been running into my patients too often on my trips to restaurants and store and wonder if it’s a sign for me to know that they are okay. We often think of ourselves as irreplaceable as people but time and time again, I have seen and experienced that we are all dispensable. I am too. Perhaps not for my kids and husband but generally, life will go on without me.

It’s a comforting thought…knowing that life will keep moving forward.

It always does. Just as those who left us after the shooting in Orlando. Heartbroken as I am, I also know that no matter how big the grief or loss is, we have no choice but to find our inner strength and keep marching and keep pace with this thing that we are trapped in, the perpetual march of life.

Tomorrows can only be better if todays are valued. With incurable cancer, today is what I have.
And today is what life offers you as well.

We all want a better future, devoid of hatred and bigotry. I do too. I may not be around to see what I plant today, to see it grow and thrive to maturity.

Not working for a better future is the loss of ultimate hope.

Life expects all of us to be hopeful. I am too, in so many different ways.

I wish peace to all as we deal with a national tragedy.

I stand by all oppressed and distressed in this moment of grief.

But I remain hopeful. I remain grateful.