[2021-10-07] Nadia Chaudhri's story

This morning, I read the news that Dr. Nadia Chaudhri, a Concordia University professor who documented the last few months of her life on Twitter, had died of ovarian cancer.

I first learned of Nadia three weeks ago, when a friend sent me a link to a Twitter thread in which Nadia shared her story of being diagnosed and treated for ovarian cancer. Juxtaposed against her experience, my pathway to answers was much faster. I feel lucky that I was diagnosed as quickly as I was.

Nadia's story
My story
In January 2020 I started feeling unwell. I was tired, had vague abdominal pain, severe lower back pain & a mild increase in frequency to urinate.

I was treated with antibiotics for a UTI even though I did not have classic UTI symptoms (high bacterial load, burning pee, big increase in urge to pee).
In early July 2020, I, too, experienced an increase in frequency to urinate. I spoke with my doctor over the phone, telling her that I thought I might have a urinary tract infection. The doctor said that she could have me in for a blood test, but that it could take several days to get the results. Instead, she sent a prescription for antibiotics to my pharmacy. Unlike Nadia, I was not experiencing abdominal or lower back pain.
I also got an endovaginal ultrasound that showed free fluid in the abdomen & the possibility of a ruptured left ovarian cyst. The recommendation was to follow up in 3 months.
On July 29, 2020, I woke up with a pain in the upper right quadrant of my abdomen. It was unlike any pain I had experienced before. I called Telehealth Ontario, which insisted that I go to the closest emergency department immediately. Among the tests that the Queensway Carleton Hospital ran that day was an ultrasound. The technician performing my ultrasound left the room at one point and then returned to say that the radiologist had requested a transvaginal ultrasound. I thought nothing of it. By the end of the day, the ER doctor informed me that I had ovarian cancer.
Antibiotics plus a laxative seemed to treat my ailments. But then by mid-February all the symptoms returned. My doctor prescribed a different course of antibiotics, although again in the absence of classic UTI symptoms. Things seemed to improve a bit.

Come March, the pandemic struck. By now my abdomen was bloated and I was in moderate pain. My bowel movements had changed too so I kept taking stool softeners. I couldn’t see my doctor because of the pandemic. I was incredibly tired but I chalked it up to the pandemic.

By April I was on a third course of antibiotics. My doctor still suspected an ailment related to my urinary tract. I was tired but thought it was the antibiotics.

In May I had a second endovaginal ultrasound. This one showed that my ovaries were enlarged and had moved towards the middle of my abdomen. There was a lot of ascites in my abdomen too. The radiologist suggested endometriosis.

I showed my scan report to an Uncle who is a gynaecologist. He said I should get a blood test to check CA 125, CA 19 and CEA. These are cancer markers. He wanted to rule them out before pursuing endometriosis as an option.

My CA 125 came back at 925. The normal level is 0-35. That night I got connected with Dr. Lucy Gilbert @cusm_muhc. She is a top Gyn/Onc in Montreal.
After the ER doctor broke the news to me, he sent me for one final test: a CA125. All of this occurred on the same day, not over weeks and months, as it did in Nadia's case. My CA125 was 920―almost identical to Nadia's. That result provided further evidence that we were dealing with ovarian cancer.
The next day I had an endovaginal ultrasound by one of her specialists, followed by a CT scan and blood work. Four days later I met her in clinic. She said 24 of 25 doctors in the tumour board said I had cancer. She was holding out for endometriosis.
I, too, had a CT scan the day after my ultrasound and CA125 test. It confirmed the presence of tumours and showed the extent to which the cancer had spread beyond my ovaries.
Two weeks later I had a laparotomy. They cut me open from sternum to pubic bone. Indeed, I had cancer. They removed all of the visible disease in a four hour surgery. It happened on June 10 2020. About 6 months after I first started ‘feeling bad.’
My surgery occurred on August 28, 2020, a month after I was unofficially diagnosed with ovarian cancer, and no more than two months after I started experiencing the urge to urinate more frequently.
4 weeks later I began chemotherapy. Standard of care for ovarian cancer has not changed in 30 years. Over 18 weeks I took carboplatin and docetaxel (allergic to taxol). It was 6 cycles of chemo, once every 3 weeks. My CA 125 dropped, a good sign.
I, too, started chemotherapy―CARBOplatin and PACLitaxel―just over four weeks after my surgery. Like Nadia, I received chemotherapy every three weeks, for a total of six rounds. After three treatments, my CA125 had dropped to 19.
I was also enrolled in a clinical trial that began on cycle 2 of chemotherapy. I was getting either placebo or immunotherapy before each chemo.

Once chemo ended (late October) I started getting niraparib as part of the trial, in addition to placebo or immunotherapy every 6 weeks. Niraparib depleted my hemoglobin, but I was fairly functional, specially after a blood transfusion in January.
I was not enrolled in any clinical trials, but I did start taking olaparib (marketed under the brand name Lynparza) one month after completing my chemotherapy in January 2021. My oncologist told me that this drug was particularly suited to people with a mutation in one of their BRCA genes. I was found to have a mutation in my BRCA2 gene, first in my tumours and subsequently in all my blood cells. My oncologist told me at the time that "overall, this is good news" because there are more options for the treatment of ovarian cancer in carriers of a BRCA gene change and their cancer is more responsive to chemotherapy.
Then in mid-December my CA 125 started to creep up. Not a good sign. It crept up slowly. But because this started happening within 6 months of the end of chemo it meant that my cancer had a label: platinum resistant. It had learned to evade the platinum based chemo.
In contrast to Nadia, my CA125 has remained low and steady. It's been almost nine months since I finished chemotherapy. On the day of my last chemotherapy, on January 14, 2021, my CA125 was 10. It dropped to 8 a month later, and to 7 three months after that, where it has remained steadfastly for the past five months.
I remained on the clinical trial until March when I developed a bowel obstruction. This disqualified me from the trial. I began treatment with Caelyx, which didn’t work, and then Abraxane which showed promise at first and then stopped working.

Between March and now I’ve had more bowel obstructions than I care to count. The most recent one hasn’t opened. It is why I have moved to palliative care. I can’t poop or pass gas. I can’t eat. I’ve been on IV fluids for 2 weeks.

My official diagnosis is high grade serus epithelial, platinum resistant ovarian cancer. Ovarian cancer comes in many forms & treatments are more advanced for some forms than others.
Despite my relatively quick progress through the healthcare system, I was diagnosed with Stage 3C high-grade serous carcinoma, a type of epithelial cancer. This is an aggressive cancer: tumours usually grow quickly and spread widely before they are diagnosed. In 70% of cases, this type of cancer is diagnosed at Stage 3 or Stage 4.

Had I gone to my doctor in July 2020 about my increased urge to urinate, she might have requested a diagnostic test that could have taken months to get. For example, when I saw my doctor for a physical in April 2021, she requested a follow-up ultrasound, which took place in August 2021 and might have occurred even later had I not called a few times.
But the bottom line is that ovarian cancer research is underfunded. We also need more awareness of symptoms because early detection improves prognosis dramatically.
Given how vague the symptoms of ovarian cancer are and how little they are recognized by both individuals and healthcare professionals, awareness of ovarian cancer is key to early diagnosis. I am forever grateful to the Queensway Carleton Hospital for discovering my ovarian cancer and to the ER doctor for telling me, unequivocally, what I had. It set in motion further tests and treatment that saved my life.
I hope you found this thread helpful. Know your bodies. Pay attention to fatigue and changes in bowel/urinary tract movements. Make sure you understand all the words on a medical report. Do not dismiss your pain or malaise. Find the expert doctors.
Nadia is right. Know your body. When something changes or doesn't feel right, see a doctor. Don't dismiss your pain or malaise. Push for tests, and follow up to make sure they are scheduled. Learn the symptoms of ovarian cancer. Pay attention to ovarian cancer or breast cancer in your family and share this information with your doctor.
Although this has been the most frightening time of my life it has been filled with brightness and love.

I have never felt so much love. I have built legacies through the immense generosity of family, friends and a tribe of supporters who have bolstered me into the clouds.
Like Nadia, I have benefited from an extraordinary amount of love and support over the past year. The impact of your caring cannot be underestimated.

As I look back at my blog, which began as a gift to others, I realize that it has been a gift to me as well. It has chronicled―more faithfully than my memory ever could―my physical and emotional state as I moved from diagnosis through treatment and beyond.
I will feast in my new life and welcome everyone to my forest table.

I am not afraid.
When Nadia began documenting her life, she knew she was dying. Perhaps that certainty and her acceptance of it enabled her to not be afraid.

But I am afraid. Not every day, but certainly for brief moments here and there, especially when I hear of someone who has died of ovarian cancer. When the fear comes, I brush it away, like cobwebs in the corners of my mind.

Nadia was 44 when she died―way too young for a wife and mother of a young child.

A CTV News story (Concordia neuroscientist Dr. Nadia Chaudhri, who inspired thousands on Twitter, has died) encapsulates the impact Nadia had through her Twitter account. One person told CTV News that they were "drawn to her love of life." Another person said: "Dr. Chaudhri has invited the world in.... She has let us come and sit with her while she unflinchingly stared down her own mortality.... She chose to live out her best and her worst moments very publicly and in that I see a dogged determination that is really a wonder to behold." Nadia's example inspired one person to listen to her body and go see her doctor, and another to give blood despite his fear of needles. A fellow mom told the news outlet that reading Nadia's tweets changed how mindful she was when spending time with her own daughter: "I try really hard―harder than ever―to not take it for granted."

Coincidentally, today's weekly newsletter from Atomic Habits author James Clear included this quote from author Karen Blixen on the healing power of story: "All sorrows can be borne if you put them into a story or tell a story about them." Nadia no doubt bore great sorrows. But by putting them in a story, she found a way to uplift others. What an incredible gift.