Why I Keep Writing

[Commentary by Dheeraj Raina: This post is published under Uzma’s byline because it’s a previously unpublished post of hers. To read my approach to her unpublished work, read this. I know Uzma wanted to write a longer post about this. She was unable to complete putting many thoughts on paper because of the unpredictable ways in which cancer and its treatment interrupted life repeatedly. She started writing for herself. Over time, she heard how much her writing helped others. After learning that she never could ignore the obligation to write for the sake of others. That’s why she felt a great emotional need to complete her book before death came.]

From my inbox :

“Hi Uzma–

I want to introduce myself as a fellow warrior. I’m a physician and saw your blog thanks to a Facebook group yesterday. I read your Carpe Diem/Crappy Diem post and I have had the exact same musings. I am (age) yrs old and was diagnosed with stage 4 breast cancer last May. Initially, I was quite ill (liver mets). I have been back to work since September (was still in my initial chemo at the time) and am back in treatment (now near weekly chemo because things got worse in January). I’m feeling pretty great, all things considered. I have a husband and a young child.

Anyway, I wanted to say hello, and to let you know that I’m here working, alongside you and fighting. And actually, I’m fighting back tears after reading your blog posts, which contain many things I have thought about for the past year. Thanks for writing and making me feel not so alone as a doc and mom.”

We became friends. She is currently in hospice and the inevitable is looming and as I grieve I hold on to her words.

The Kindle Edition Of The Book Is Here!

Letting all readers know that Uzma’s book is now available worldwide as a Kindle edition (ebook version of Amazon).

We can all read on the Kindle device and in the Kindle app of any smartphone.

And those who have purchased the paperback (that is, it was not a gift), can get the Kindle edition for 2.99 USD or comparable price on their local Amazon site.

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.