It was a beautiful warm day in June and I was making my way to The Princess Margaret to interview one of Dr. Amit Oza’s patients in order to share her story with you, the reader. I met up with Elana in the lobby of The Bras New Drug Development Centre and was pleasantly surprised to see that she had brought along her Mom, Elaine. Let me share with you Elana’s story:
Elana is a well-composed young woman with a ready smile and an easy laugh, and dark eyes that dance! She was very much at ease and ready to share her cancer journey. Her mom, Elaine, is also striking and an equally composed woman who, until the end of the interview, sat quietly beside her daughter.
I asked Elana to begin by telling me about her journey and her first sentence was: “It has been a long journey! I was diagnosed with stage 3C Ovarian cancer on August 19th, 2005. I had been going through fertility treatments – my husband and I were trying for our second child. During the course of the treatments, the doctor found some suspicious results, and two days later, I was at The Princess Margaret seeing Dr. Barry Rosen in the GYN/Oncology Unit. We started with surgery in September and a chemo regimen in October, where I was the first person in Canada to receive intra-peritoneal chemotherapy, which is where they deliver the chemo through a catheter directly into the abdominal cavity. That was hell! It was a very harsh regimen and in all, I received 8 treatments until April of ’06. In the spring of ’07, I entered a clinical trial where I was administered an anti-angiogenic drug, which prevents blood flow to the tumour, in effect starving the cancer cells of oxygen. My side-effects from the trial drug were not tolerable, so much so that I was not able to leave my house for a long time. Having said that, if it worked, you learn to live with things! But it didn’t work.”
In interviewing Elana, I noted, that even though she said she had not given a lot of thought to the sequence of events in her cancer journey, she did manage to remember all the dates and small details. I found out why. Elana is a lawyer and used to practise family law, which she unfortunately had to give up because of her illness. Elana’s attention to detail was incredible, so much so, I was not finding out who this delightful gal really was underneath the detail. Yet!
Elana’s attention to detail was incredible, so much so, I was not finding out who this delightful gal really was underneath the detail. Yet!
Elana continued. “I was diagnosed in August and my daughter, Sydney, had just turned 2 the month before.” I asked how she managed going through cancer treatments with a young daughter. She answered; “My mother, who lives in Montreal, would come in for each of my treatments, even though she was still working fulltime, and would take time off work to stay with me for the four or five days when the side effects of the chemo were at their worst. At that time of my initial diagnosis, I also had a nanny because I was working full-time. The nanny would come in to help care for Sydney.
“I had my first surgery on September 23rd of ’05, which was called a debunking, where they try to get out all of the disease they see. That surgery resulted in a complete hysterectomy. My husband, Mark, wanted to see if they could save at least one ovary, but I said take out whatever you need to take out. Don’t worry about family planning! They discovered I had spots on my liver, my spleen, my diaphragm, and pelvic floor. Dr. Rosen scraped everything that he could see and then I started chemo. I started a second line of chemo in July of 2007. I did four of 9 rounds when I had a second surgery on November 22, 2007, in the middle of the line of chemo. Dr. Rosen scheduled a spleenectomy. He removed my spleen, and then, he went to remove some spots from the back of my liver. When he went to move the liver, it just shattered. They could not control the bleeding and after receiving 45 units of blood, I woke up December 2nd! Did you know that the human body only carries 9 units of blood?” asked Elana.
I stopped the story and directed a question to Elana’s mom. “You must have been scared.” Her answer: “We don’t talk about it. We just watched Dr. Jason Dodge going back and forth on the surgical floor carrying coolers packed with blood!”
Elana continues the story: “Dr. Ian McGilvray is a liver transplant surgeon at Toronto General Hospital where the surgery took place, so they brought him in to do a liver resection. It was a very long recovery and that was very hard on my daughter. I had told her I was going in to the hospital for a few days and they were going to cut the “sick” out of my tummy and she thought I would be home after four days. It was two weeks before I even spoke to her.”
Elana continues her story to tell me that after completing her next round of chemo, which brings us to 2008, there was ‘no evidence of disease’ for about 6 months. Then the numbers started to rise again, and this is when we started to look at clinical trials and I was moved into the care Dr. Amit Oza in New Drug Development. I was going to be entered into a clinical trial, but at the 11th hour, I found out that because of a previous treatment consisting of an anti-angiogenic, I could not enter this trial!” In listening to Elana tell this part of her story and watching her body language, I began to see some emotion. This period in her journey was becoming more difficult for her and a little more difficult to tell, but she carries on without a beat. “After a third line of six treatments, which brought me up to the year 2010, my numbers got lower and the disease stabilized, but never to the point of ‘no evidence of disease’ or NED.”
After a third line of six treatments, which brought me up to the year 2010, my numbers got lower and the disease stabilized, but never to the point of ‘no evidence of disease
I asked Elana how she was feeling at this juncture in the story, and she said, “When I’m not on chemo, other than the fatigue, I’m okay. There are days when I cannot get out of bed in the morning, but that is okay. There is no physical pain; it is just fatigue, so I’ve learned to manage my lifestyle! I am lucky in a sense that because I receive disability payments, I don’t have to go into work. “In 2010, I wasn’t NED, but I was stable. This was in late spring and Dr. Oza said, ‘You are good for a couple of months, so we are going to give you a break.’ So, two-and-a-half weeks later, my husband, my daughter, my mom and I were on a plane to Israel!”
Elana’s face lights up and a big smile stretches from ear to ear as she is sharing with me this part of the story. The excitement is showing and she continues. “It was very important to me that I be the one to take my daughter to Israel for her first trip. It was AWESOME! It was really, really incredible. Sydney still remembers it. She still talks about it. We celebrated her birthday while we were there. It was amazing! It was really, really good.
“In January of 2011 I started a clinical trial, but I only did it for a couple of months as I didn’t respond. Then, in June of 2011, I was entered into a new clinical trial and was on it until December. However, during this time, in May I developed a plural effusion that got progressively worse. It is fluid in the lungs. Dr. Oza believed it was a reaction to coming off the previous clinical trial. This was a really bad summer. This was the first time in this whole process that I got scared because I couldn’t breathe. It was the first time I felt sick, because up until that point, the only time I ever felt unwell was because of the chemo or because of surgeries, it wasn’t because of cancer!
It was the first time I felt sick, because up until that point, the only time I ever felt unwell was because of the chemo or because of surgeries, it wasn’t because of cancer!
So this takes me through the summer at which point I am on this clinical trial that I started in June and I stayed on it until December. And I responded REALLY well. It shrunk my tumours INCREDIBLY! I was on a combination of low-dose chemo called cyclophosphamide and a PARP inhibitor and then, in December, my numbers started to go up even though I was still on the trial.”
What a battle Elana was in!
“I got kicked off that trial because of the tumour growth. Psychologically, this was very difficult because I had been doing so well. I’d been handling it well, I had been exercising so I was feeling better, feeling strong. I didn’t handle being kicked off of that trial very well. I then hibernated through most of that winter and started my fourth line of chemo. Today, I just finished my last treatment.”
Today, I just finished my last treatment.
I asked Elana how she handles her frustration. Her response is, “I try to channel it elsewhere with positive energy. I have a video blog on Chatelaine.com and my blog is called ‘Time to Shout.’ The reason my blog is called a ‘Time to Shout’ is because Ovarian Cancer is known as the ‘cancer that whispers.’ Because the symptoms are vague, they are diffuse and they are often misdiagnosed. I also have a website that is called www.itstimetoshout.com. In the past, I have done significant fundraising for the hospital raising over $500,000 for PMH in the lastfour years!” This gal is incredible. She is waging a battle for her life, and raising money for Ovarian Cancer- early detection. What an amazing gal!
“Did you know,” asks Elana, as she goes back to ‘the cancer that whispers,’ “If there was a cancer tool — if ovarian cancer is diagnosed in Stage One — there is a 90% cure rate? Not survival, but CURE! If it is diagnosed in Stage 3, where I was diagnosed, it is a 5-year, 30% survival rate. That is a HUGE discrepancy. So you know, if we could have something equivalent to the Pap smear for cervical cancer, we could have a 90% cure rate! If we can get an early detection tool – it is not going to help me – but it is going to help lots of others! So that has been my focus and where I direct my fundraising efforts!”
In speaking of fundraising, Elana commented on the brilliant campaign that The Princess Margaret Hospital Foundation was undertaking. Her comment was, “No two cancers are alike, which is why this campaign at the hospital makes perfect sense!”
In closing, we spoke of attitude. We also spoke of changes to one’s life.
Elaine, Elana’s Mom, said how very brave Elana is, and Elana said she does not have a choice! Her Mom said, “Oh, but you do. We sit in the waiting room and listen to people complain!” So I asked Elana if she sits and complains.
“Here is my theory” says Elana. “I am a very positive person and I have always been generally happy and I have good coping skills. You have a choice – you can be beaten down by whatever is afflicting you, whether it is medical or financial or whatever it is, or you can shrivel up in a corner and cry, and then what kind of life are you leading? Or you can get out there and live what life you have while you have it! For example I just purchased a baby blue VESPA!” Elana laughed out loud.
You have a choice – you can be beaten down by whatever is afflicting you, whether it is medical or financial or whatever it is, or you can shrivel up in a corner and cry, and then what kind of life are you leading?
In speaking about changes to her life, Elana answered, “I don’t wait for big things anymore. For example: the trip to Israel or the Vespa. These are things I really wanted, and I am not going to put them off. I may get hit by a bus tomorrow so I try to enjoy the time that I have – regardless of how long that is. Cancer is a real kick in the ass, pardon my French, so I try to take advantage of the time I have. I think for the little things, you do still get caught up in life, the day-to-day normal life. What has changed is that I have seized on the bigger opportunities that, had I not had cancer, I may not have taken. Outside of my control are the other things that have changed. I am not working and that is a huge change. My family life has been severely impacted in that my plan was to have three or four kids, not one. I am also a bit more impatient. I am impatient with stupidity.”
I asked if she had one last comment to the reader. “The only thing I want to say is when you meet somebody on the street who has cancer, don’t treat them differently. We are not different. I have cancer. I am not sick. Deal with it! I am.”
Maggie Bras, 2012