The last day ( Jan 4 )

As he lay dying, a life barely sustained by oxygen coming out of a very noisy respirator, I interjected my voice loudly as I stood in the door way of his room,
“Daddy this is Uzma!”
The first time that I needed to do that. Never in his 87 years, had I needed to introduce myself to the man who introduced me to the world in all its amazing ways.
Ironical that I needed to, on the last day of his life.

I was unable to elicit a movement, a gesture, nor a smile. I had seen him just two days ago and he had told me” Come back soon okay?” and I had nodded in affirmation. He was up in his room and I chronically tired by chemotherapy did not feel like going up the flight of stairs and said “Bye, I will” not knowing that I had passed up on a last good bye hug with my father, a hug that he actually was able to understand.

A disruptive respiratory sound of accumulated mucus was clearly audible from his throat, the liquid spinning in a chaotic fashion in a pipe totally stuck, neither allowed to go lower or be coughed up. It took a little while to get adapted to that sound, accept it and embrace it as part of the impending death. The harsh word that gutted me is called “death rattle” in medicine. That sound was indeed the death rattle.

We play with rattle as babies and then as-near death adults. Somehow a rattle ever present, ever distracting, in arrival and departure land.

The hospice nurse used tiny lollipop like spongers to keep his mouth wet and periodically his lips would pucker around-it.
He had largely stopped swallowing but my mom in her desire to feed him his favorite food, kept bring up a bowl of her hope in form of strawberry ice cream. She remained interested in extending his life even though that morning arrangements for funeral and grave were being made.

A strange mismatch of acceptance and denial often plays out in deaths. Even when we can hear it and see it, we choose not to.
I was also torn. The physician in me knew before hoping on a train from Chicago to Milwaukee, that I am going to visit a dying man. But as soon as I entered the room a daughter’s tears flooded her eyes. I regrouped myself to assess the seriousness of this juncture in his life. The rattle often lasts no more than24/48 hours. I had packed clothes for a day. I positioned myself right next to him in his own bed in which he laid comfortably albeit some respiratory distress. I suspect the rattle was harder to hear for my mom and me than for him.

Given my own stage four metastatic breast Cancer, I have read plenty articles on death, dying and the transition.

Keenly aware that hearing is maintained till the last I used this chance to tell something’s and express my love for him. I played some of his favorite qawwali (devotional) music and would see his toes move. I can no longer hear those songs now without balling.

I asked him for a selfie and I got an awkward facial movement that could be considered the best smile from a dying man or so I decided to believe.

His eyes had started to look muddied; hospice nurse explained it as an imminent sign. I stuck even closer to him. It was the last few hours to cuddle with Dad and I wasn’t letting those go. His grip on my hand remained firm till the end even as his grip was loosening over life, I stroked his hair and he passed away with more hair than I currently have. My own image of death has always been dying bald, without eyebrows and lashes, I felt happy that he had been spared the indignity.

He used to sleep with a comb at his bedside and if woken up, comb again and then fall asleep. He never looked shabby.
He also had very sharp hearing, much like mine.
In the middle of the night was me putting water to boil for tea as I used to wake up at two am to do my med school studying.
He would gently call me from the bedroom with one eye open and ask “are you making tea?” That question incorporated the assumption that he gets a cup too.
He would drink that cup and then immediately fall asleep.
I would envy his sleep which remained terrific until he got on steroids for his lung disease.
He was an-early sleeper and-early riser and I suspect it was a significant factor in his mental sharpness up until some delirium set in his last days.

Today he was dozing in and out under the effect of morphine. He was quiet without the stories of British India, his math skills and how attending-class was optional for a student like him. His current mobility was restricted to an electric chair that helped him negotiate two floors and a fun ride a nana’s house for my kids.
I was somewhat convinced that he had been accepting his fate from now on.
At 87, I have often wondered what he saw and accepted and what he vehemently denied. He underwent two migrations, one that was bloody and rife with fears and the second one requiring consciously giving up what he migrated for the first time.
I stood there trying to figure out what to accept and what to deny.
Sometimes hearing oneself aloud clarifies psychological issues faster than spelling acceptance.
Many patients moved forward not because I offered them golden nuggets of insight but it was their own voice that changed things within.
I readily accepted that he was waiting for me to pass on to be with me my big brother could not make it in time.
I felt Dad gave me special gift of his last moment like the 2 am-tea cups he-and I used to share.
He very tactfully avoided my Cancer for the last five years and every to me convinced me that the scan would be normal.
It mattered for him to say this aloud to make it believable, I would fall a little into his denial hope trap with him.
Then scan results would come and he would reset expectations to the future scan.
I had suspected that internally he knew that I was terminal and he had decided that he would go before me and when I got diagnosed with metastatic disease in my liver and bones, that is when I saw his decline.
I saw him more desperate, vague and more in denial during my illness. But with time, he was more in denial as he deteriorated.

When I got Cancer, it took me a while to loudly here my own voice saying “I have Cancer” I thought it was the hardest thing to say.
Little did I realize that saying “my daddy passed away” is so much more gut wrenching and real with no ability to be in denial it as death is so irreversible and even opiates cannot take away that pain.
I am currently trying to work past the denial that I will never see him ever again, call him when I want, or visit.
Have him see his grand kids
grow up and possible say the (fateha) prayers only daughter.
He denied that this possibility and left.
Dear Dad,
You won the death race and dodged your daughter’s funeral.
You collected happy memories in your blanket and coffin. I hope they offered you the same ease when your breath was leaving your chest forever and I woefully wishing for a similar peaceful death with loving family in my own bed and blanket.
You were teaching me as were leaving us.
You are no more around me but, within me, in me, my choices, my desires, my current and my future.
My genes often dictate things you passed onto me.
May be this father’s day I celebrate your legacy within me, and may be this metastatic daughter with cancer should celebrate her life which came from yours.

You are beautiful!

“You are as beautiful as you feel. It took me a long time to understand this.

Now through Cancer I still feel beautiful even though it has taken a lot in terms of physical beauty or what is considered as such in our culture.

Many times women feel ugly without their hair, eyebrows and lashes. But that is why we have wigs and fake lashes and brows.

They hide because they don’t feel desirable and feel no longer feminine.

Skin takes a hit during chemo, it stains dark sometimes and we may get a grey hue. Hands feet can darken.

But there are ways to offset all of this.

I keep getting told how beautiful I am and I appreciate it.

But I work at it.

Here is my pic with no make up and now wig.

I am putting it out there because I am no longer afraid of what I look like, what matters is who I am!” Uzma Yunus

No make up no filter

Time

The life between scans continues.

Another trimester ended and scans are being done tomorrow.

It has been a busy three months full of living, experiences and family time.

Grief has been a companion as time approaches fourth month without my father in this mortal world.

Have been busy drawing and painting which has been therapeutic and healing.

Life remain perched on a house of cards and one bad scan can collapse this outfit but until then to me it seems a castle of hope.

Is Laughter truly the best medicine?

It was chemo day today. The whole routine which starts with anxiety the night before, mental agony of the week of side effects, lidocaine on the port, a stick , a blood draw and then wait for the results. A time span of starting at other bald women who have gone to different lengths to cover their baldness, of looking at husbands watching You Tube videos to keep themselves entertained, chatty girl friends and some anxious older women. Then finally you get seated in the chemo chair. Now its staring at others who are either getting chemo or will get it. You never know what you get this time, the nosy immigrant grandma who thinks its okay to ask your life story, the pleasant young professional or the weepy lady who is still not recovered from her diagnosis. Its as uncertain as cancer it self.

Among all this chaos and uncertainty, all a patient can rely on is care and comfort from the nursing staff and at the minimum, professionalism and understanding that this is the group of people whose lives are on hold or permanently wrecked by cancer.
This is a group of people who are trying to stay afloat in an unpredictable world filled with worries and fear. Empathy is desperately needed and emotional uplifting is very helpful.

Most patients after their pre-medications are dozing in and out of sleep. Some just want to close their eyes and some make small talk with others. Over all the set up is deserving of peace and quiet with an underpinning of hope and comfort.

I was sitting in my sub room with two other women as Halaven was dripping into my blood as I heard a loud piercing laughter. I noticed it to be one of the oncology nurses sitting barely three feet away at the laughing hysterically at the nursing station. It wasn’t just one loud laugh but a whole three minute laughter fest at a volume that would have pierced through a closed door.

I wondered about how other patients related to this lack of professionalism, since as a physician-patient it made my blood boil. How can such a thing occur in a patient care area? If I were the attending and had walked in at that moment, nothing short of a written complaint would have satisfied me.

I have great respect for nursing in general and especially oncology nurses who do a very difficult job. However certain lines must never be crossed and one for sure is unexplained loud laughter in patient care areas. Break rooms are perfect for staff to go and lighten the load that comes with their emotionally draining jobs.

Today for me, and I suspect for some other fifteen patients in that area, laughter wasn’t the best medicine but a rather toxic display of lack of empathy for all those who were receiving treatment.

Have you encountered unprofessional behavior from someone your oncology team? and if so, how did you feel and react?

 

Some more

Instead of laying with cold machines

All day

I wish I were home with my little girl and keeping her warm on her sick day

I wish this day were my own

Fully mine

But Cancer grabs these hours

That I am trying to gather

To put together the best I can

To make it a life, nurturing and full

A mom with cancer

A Metastatic wife

An unemployed doctor

A writer with lament

Cobble up the identities

In a string

Looking for a little hope

In radiographic scans

Every ninety days

Stop and go

Limping along

Asking gods to grant me

Some more

A little more

To us

A mom with cancer

A Metastatic wife…

Quick Advice

A little note for my mom colleagues:

Hi All,

I know many of you have weight loss as a goal. Good luck to each one of you.

Food can be addicting. If you are an over eater, remember you are filling emotional voids with food.a good diet plan involved ways to cope with stress so your therapist Inst in the fridge or the wine both stroked by guilt and feelings of overwhelm.

Weight loss isn’t a number but a sum of healthy life changes. It’s no easy feat but can be done. Adopt a change you can sustain long term. Pick activities you enjoy rather than the peer pressure thing to do. Wear a fit bit or a gadget to assess your sleep and level of activity. It’s hard to lose weight when sleep deprived.

We all DONOT drink enough water, eat enough fiber and make little home cooked Meals due to our schedules.these are all critical pieces of weight loss and adaptation of a healthier life style.

Invest in therapy if you need to , it’s not the same as chatting with a girlfriend periodically. It has goals and commitments. It’s a under untilized treatment and most think they can talk themselves out of therapy and anxiety pretty much like you can take out your own appendix.

We all have limitation , accept those, embrace your self for who you are.

The harder you are on you, the likely you are to run back to old ways.

Mom and Physician is a tough balancing act. We have to let go of some elements. We can’t do it all. Do try. It just kills you slowly inside and take away your own dreams. Hire help. Share. Take breaks and stay real.

Much love for 2018 Uzma Yunus

Prognosis: Three Years Average

Prognosis: Three years average
Uzma Yunus, MD

I started 2017 with an entire skull bone intact. I am ending it with about a quarter missing and half bald. A titanium plate sits underneath my scalp and I am less biodegradable than last year. I also have a power port (used to administer chemotherapy) in my chest much like an under skin brooch testifying to my “cancer patient” status. The skin over it has started to look weary with needle pricks and the scar from my first port highlights my cancer veteran status. I claimed membership to the cancer world in 2013 and in 2016, a few “spots” on liver as visualized on a CT scan allowed me a lifetime status. I have been living with metastatic breast cancer since 2016. When I got the news that cancer was back, I had to determine how much time I had left per medical studies. The data, although new drugs and options remain strong, states: three years average. Granted I am an “n” of one, unique in my disease, body and personality, I still can’t deny the power of odds and their relevance in medicine. Three years echoes in my mind often
This coming New Year is my third year, the final year for an average metastatic breast cancer patient. I am by no means average. I am by no means ready to die either. But fear rears its ugly head. And the thought of ringing in possibly my last year in a fortnight is quite haunting. I was laid up on the couch running a fever as the ball was dropped at Time Square, December 31st 2016. The pain in my liver was excruciating. I had recently had a liver ablation which is a fancy medical word for sticking a giant electrode into an organ and burning lesions. I had hoped that 2017 would bring more stability. It proved to be enormously challenging and rather disappointing with treatment.
In this year, I have had my skull cut open to remove cancer that had invaded it. I remain impressed by the skill and excellence of my neurosurgeon as this was the first surgery where I felt better post operatively than before it. I knew it theoretically but experienced what having increased pressure on the brain is feels like, literal pressure. The psychological pressure has been my play field. Having practiced psychiatry for almost twenty years, that pressure never intimidated me. However, severe throbbing headaches, sensitivity to light and halos wasn’t just a bad migraine episode. It was breast cancer that had hitched a ride to my skull. Of course, I can quote the ten months survival rate of skull metastasis. I just finished the ten months but not without a recurrence. I, however, remain thankful that my actual brain tissue has been spared so far.
Having had cancer, I stay in the habit of practicing gratitude. Never mind the months of pain as I tried to rest my head on the pillow, the uneasy sensation of the missing skull and the deep fear that cancer has a lounge seat in my skull. I distract myself with writing and communicating with other survivors. I share my story with others. It does not take the misery away but makes the suffering bearable. There were many joyful and fulfilling moments this year and the notes of appreciation especially from other survivors fill my heart. I was covered by local NBC news and interviewed by local PBS as well as written about in the Chicago Tribune. I made my debut as a model for Ulta’s BCRF campaign. I put myself out there and received lots of love and appreciation.
I have received 25 cycles of chemotherapy thus far. However I am currently half bald due to radiation to the skull. Every morning, I stare at the shampoo and the body wash and decide based on how bald I feel that day. I have been bald 2 and half times. I am proficient however in styling wigs and changing my looks. My internal outlook also changes daily. The days I focus on the good and positive, the likelihood of having a good day rises exponentially, then there are days when I let go. Those days can cripple me with anxiety.
I also believe that this year I experienced a clinical episode of depression which I attribute to one of the oral chemotherapies. One may think that as a psychiatrist, perhaps, I remain in denial of my clinical symptoms and don’t want to accept that I am depressed and I would accept that as a valid criticism. I mean, there isn’t much going on that is truly hopeful with my clinical status. In the last year, none of the harsh regimens I received made any impact on the cancer growth which has continued to gradually take over my liver that was once pristine. I have never had a single drop of alcohol in my life and I did get the fantasy when I had liver metastasis, that I should try once since this is my only shot, no pun intended at trying it before it’s too late but the religious guilt intervened. The depression developed insidiously over a couple of months along with other suffering that the chemotherapy drug had brought me. I did not realize the full extent until one day in the middle of the night an unusual thought crawled into my head, “ I should buy a gun and end this all”. I was mortified at the place my mind was wandering to. The next morning, I confided in my husband and the day after in my oncologist. He fortunately was very supportive and could see misery and sadness in place of the usual determination on my face. He discontinued it as soon as the scans showed that cancer remained unaffected by this treatment as well. And few weeks later, the depression disappeared. I thought of all my patients who dealt with suicidality and the pain they endured. I felt their tears blend with mine.
July 2018 was supposed to be my fifth year mark of having had cancer, and back in 2013 I was all out to “beat it”. I had planned that I will go to the Time Square to celebrate this milestone and scream to the world that I made it. I fantasize that I will be well enough to do it this summer anyways. I also fear that it may be my last trip to New York. I have fond memories of New York where I had landed as a young physician ready to take on the world. I had traveled extensively throughout the country for residency interviews and accepted a spot in Chicago. I had dreams about a long and fulfilling psychiatric career, never knowing how it would be cut short and I would become a “career” patient with the demands of cancer treatment.
The average prognosis for what I have is three years and the third year is starting. I feel ill prepared, tired but keep looking for hope within me and within the arms of science and medicine. Although I have put great amount of work into making peace with this incurable diagnosis, no one is ever ready to die. I try to balance true hope and reality each day. I read the twitter feed of many oncology researchers regularly. I work at keeping my physical strength up. I live life daily. I no longer practice medicine but use those skills to mine and other’s benefit. But there is so much left. An almost written book sits in my lap top that I promised my blog readers, a desire to continue to motivate and inspire others and above all, my two children and husband. A huge network of support cheers me on. But the cancer keeps growing and I keep reminding myself, I know the statistics but may be the cancer doesn’t ( stale joke but carries a little hope). I remind myself of never ever having been average. I remind myself of the innumerable times I instilled hope in my patients and I remind myself to allow healing and thinking less of the cure.
I have only one resolution this year and that is to ring at least one more year and as far as weight and other typical new year’s resolutions, I gained twelve and I lost fifteen so yeah, take that cancer. Third year or fifth year, hopefully some more time, good quality time with lots of conversations and happy moments.