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.