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How A Doctor Chose Her Last Doctor

About one and a half years before she died, Uzma started looking for an appointment with a palliative care physician close to home. She called a few different palliative care physicians’ offices. The conversations would always go the same way.

“Hi this is Uzma Yunus. I have stage 4 breast cancer. I want to make an appointment with Dr. ABC.”

“Have you been referred to hospice?”

“No, but I know that eventually that’s coming my way.”

“Mmm…I am not sure how to do this. Leave your information with us. We will call you back after speaking to the doctor.”

Uzma was an optimist. She continued cancer treatments almost an year longer than a part of her really wanted to because she thought, “There is a chance that the next treatment regimen might click for me. If that happens, my kids will have me around longer.”Uzma was also a realist like none other. She always tried and hoped for the best but knew, based on her review of the literature regarding stage 4 breast cancer, that she was unlikely to make it past this year.

It is really hard to be an optimist and a realist at the same time. It is even harder to be both and be one who plans ahead. Uzma had changed her cancer care from a nearby cancer center to Northwestern when her local oncologist had made treatment recommendations that were inconsistent with treatment guidelines. On most days, however, Northwestern was an hour drive away each way. She knew that ultimately she would need palliative care/hospice and decided she wanted her palliative care team to be local, not based an hour away.

So she started calling the local docs. The conversations always went the same way as above. No one ever called back. Then she got hold of her internist and asked her help in getting an appointment with a palliative care physician. This finally got her the appointment she was seeking.

The palliative care physician was surprised that she was seeing him while still in active treatment. Uzma saw this doctor 4-5 times in his office. When she was eventually referred to hospice by her Northwestern oncologist, she proudly said, “I already have a palliative care physician. I want to be referred to the hospice for which he works.”

When she began hospice it gave her comfort to already know the physician and I’m sure it helped the doctor to already know his patient.

[If you like this post, you may also like its companion post The Hospice Way To A Good Death]

Uzma Did Not “Lose” Her Battle With Cancer

The tributes and the reminiscences have continued to pour in since Uzma breathed her last over a week ago. I have also seen some people write about her on their own social media pages. All of them speak of Uzma in glowing terms. However, some of them say, “Uzma lost her battle with cancer” or something along those lines.

Uzma would have hated, and I hate that description.

Uzma would have said — It is unfair to cancer patients and their families to describe the outcome of their cancer journey as winning or losing. The disease can be such that one can survive and thrive for years after only one bout of treatment. Or it can be relentless and overwhelming, and fail to respond to treatment after treatment. The only choice those with cancer have is whether to embrace their illness, connect with others and live their life fully irrespective of its length. That’s it.

As she says in her book, “That’s how you rock it (cancer). You talk to others, you connect with survivors, and you keep your head high. You make friends with fear. You learn that uncertainty is cancer’s middle name. You stay grateful even in the darkest days. You dress up for chemo. You sport fashionable headgear. You fall and get up again and again and again.”

Uzma did not lose her battle with cancer. Her cancer died with her. But while they were both alive, it was a no contest. Uzma had her cancer beat every single day that she was alive.

Final Farewell

Uzma was laid to rest on February 3, 2019 in ceremony attended by close and extended family, old friends, new friends, former coworkers and many people who had never met Uzma but only knew her through her writing. Everyone who loved Uzma, everyone who attended the services, and especially everyone who gave a eulogy made her final services serene and beautiful. Thank you.

Uzma was laid to rest following Muslim tradition because she was born a Muslim. However, she in her life and death she transcended all divides, whether of faith, creed or national origin.

The following text is from the concluding paragraphs of my prepared remarks for her eulogy:

“My Uzma wrote and through her writing touched many lives around the world. Her blog has been read by 300,000 readers in 170 countries. What draws people to her blog and now to her book is not just her simple, unpretentious way with words, but also the way the writing conveys her acceptance of uncertainty and fearlessness in the face of the death. When her cancer recurred and became stage 4, she knew that it would take her. She started to take more of life in, love more deeply, play with more abandon and give of herself more freely. When people reached out to her after reading her blog, she took time to speak to them and sometimes counsel and coach them as a friend. I knew this, but I didn’t know the extent of it until she died and people from around the country and around the world started messaging me saying how she had helped them through 1:1 interaction. And that tells me that she is no longer just mine. Through her writing my Uzma became your Uzma, our Uzma, the world’s Uzma.

David Eagleman, in the book Sum: Forty Tales from the Afterlives says, “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.” Uzma died 4 days ago. Today we consign her to her second death and mourn again. But I am confident that through her writing and by becoming the world’s Uzma, the third death will be a long time coming, perhaps even after most of us gathered here today are long gone. Therefore, I say, let’s continue to celebrate our Uzma after we have mourned her today.”

In Memoriam

Uzma Yunus, MD, the creator of this blog and my beloved wife of 17 years, breathed her last on Wednesday, January 30, 2019. She was laid to rest on February 3, 2019 at Memorial Park Cemetery following a wake and memorial service made beautiful by the love of friends, family members and many fans of her writing who attended.

Uzma wanted this blog to continue and had added me, her husband, Dheeraj Raina, MD as an admin/author. It will take some time to figure out how this blog will be continued. In the meantime, please order, read, review and recommend her book Left Boob Gone Rogue, published a couple of months ago and available on Amazon.

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“Left Boob Gone Rogue” the book

As I have said often, the only thing certain with cancer is uncertainity. . Last year, I was immersed in it. Different kind of challenges kept popping up , treatment and other wise.

I was being treated with Halaven ( Epirublin) which although kept me stable for 3 months, casued me severe neuropathy. I took a few falls and my balance was ruined. For a period of time I was using a walker and periodically used a wheel chair.

My blood sugars went completely out of sorts and they contributed even more to the lack of balance.

To top it all , I was running unexplained fever.

All of this started early June and did not abate until end of August completely. The Halaven stopped working and it was time to move on to another agent. This time it was Navelbine which I am currently on.

In between all this, the part of my skull that had been operated upon started to hurt. On MRI , they founf three spots in need of radiation. I went through five sessions of high intensity radiation during which chemotherapy was suspended.

Now I am back on chemo but my liver seems unhappy and I get pain from it off and on.

The challenges have been numerous but for now I am working hard to deliver my book “Left Boob Gone Rogue” in your hands this month. So stay tuned.

Also the blog has been update and will be up and running. Please leave in comments what you would like to hear about.

Much love,

Uzma

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 and 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 no 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?