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Sleeping in my own bed

It is such a nice feeling to be in your own bed. Hospital beds with their crackly plastic pillows and amazingly slippery nature are beds only in name. It feels like they conspire against you to slide you out slowly when you start up top and gradually you are wedging your heals helplessly to not slide down to the foot rest. They can turn a person into a clasp knife with their buttons and you feel like a man eating plant is about to suck you in. Having been in the hospital for three days including one stint of almost 12 hours on an ER gurney has made me appreciate the try blessing ones own bed is. The sheets are soft almost in keeping to your required level of touch and the pillow aren’t trying to create weird angles between your neck and body. I can’t stand superfull round pillows which prop my neck too much. Also because my incision is right on the back of my head it prevents me from lying on my back. So here I am so very thankful warm in my own bed, grateful to have this moment of comfort tonight. There are challenges that lurk in the back ground but for tonight my goal is a good night’s sleep , a luxury many can only dream of.So I submit my self to it gladly and wish you a very good night too.

Uzma Yunus ( Status post craniotomy aka cutting open of the noggin’ on 04/07/2017)

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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.