My Family's Cancer Story
June marks an important month in the origin of LiveSmyle. It was in the month of June that the inspiration for this platform was born out of the loss of an extraordinary woman: Dr. Tulay Kent. On the second anniversary of her passing, we honor her memory by sharing the story of how cancer impacted her and her family. The story is told from my point of view, her son, with the help of my step-father who provided important details for the times I wasn't around.
June 3, 2015
It's 1:15 in the morning.
A sister, a husband, and a son sit quietly and look on as their loved one struggles to take her final breath. The feeling is surreal. Almost as if I'm observing the scene from someone else's perspective. I mean, I'm in the room. I'm sitting right next to her in bed. But ironically, the gravity of the moment pushes my mind far away from what's happening. Is this really happening? Am I actually watching my mother die right now?
To understand how we ended up here, and more importantly, to figure out where to go next, we first need to go back in time and explore the world of cancer from a personal perspective.
Mid September, 2011
The story begins on a business trip to Mexico.
My mom had travelled down for a brief dental conference when she and a few of her colleagues noticed that her skin and eyes were turning yellow. Naturally, a doctor's appointment was arranged upon her return home to collect blood and urine samples.
September 27, 2011
The appointments begin.
Following negative results from the blood and urine samples the previous day, an ultrasound is scheduled as the next diagnostic step. With her eyes and skin still yellow, she goes in for the imaging appointment around 5:00PM. At this time, my step-father, Tuna, is at home dealing with housework when he receives a phone from call my mom. She's in tears and can only manage a few words at a time.
"Tuna, they found something. Come over here."
"What do you mean? What did they find?"
"I have something in my pancreas."
Tuna immediately sets out to the imaging center where a CT scan is being set up to further investigate what was found in the ultrasound. With my mom in the scanner, a radiologist and Tuna watch the cross-sections load on the computer screen one image at a time. Even without any formal medical training, Tuna recalls, "As the slices of images were coming in, I saw it. And that is when our life changed."
However, nothing conclusive can be determined that night. For those who are unfamiliar with the medical field, an image is not how definitive cancer diagnoses are made. For that, a biopsy is needed. So one was scheduled.
The next 10 days are a blur of doctor's visits, more imaging appointments, and of course, the biopsy which is done through a procedure called fine-needle aspiration. In my mom's case, the aspiration is done endoscopically meaning a thin tube with a camera and ultrasound unit are inserted down the throat and into the stomach where it can sample the pancreas non-invasively.
Within a day or two, the doctor calls back with the news. It just so happened that Tuna was in my mom's dental office for a routine cleaning when he received the call. Pancreatic ductal adenocarcinoma. Cancer. In what I can only imagine must be one of the most difficult conversations to have with your significant other, Tuna goes into my mom's private office and closes the door. She looks up.
"Is it cancer?"
She took the news in stride as if she was already expecting to hear the worst. And in classic fashion with her strength on full display, she shared a hug with Tuna before marching right back into her clinic to see her next patient.
October 7, 2011
Day 1 at the Seattle Cancer Care Alliance.
It's an overwhelming day meeting the entire medical team designated to my mom's case. The oncologist, the nurse, the surgeon, the radiologist, and a host of others file into the room and introduce themselves. The agenda for the day is to lay out a treatment plan that gives her the best chance for survival. And here it was:
Start with a two-month, very intense combination chemotherapy regimen.
Follow that with 10 straight days of radiation therapy.
Allow the body to recover for about a month
Surgically remove the pancreas, gallbladder, spleen, and duodenum.
Wait a minute. Why are we removing all of these organs? Well as it turns out, the gallbladder and duodenum are connected to the pancreas and are within the path of possible metastasis, so they have to go. And the spleen couldn't be saved because it was being pinned by the tumor. It seems drastic and even a bit primitive, but believe it or not, this is the most effective way to treat cancer with today's technology. The gallbladder, spleen, and duodenum are collateral damage in the pursuit of obliterating cancer.
So what's the prognosis? It's the question everyone wants an answer to: how long do I have left to live, doc?
With pancreatic cancer, the number they always give is three to six months.
Three. To six. Months.
Tuna shares what it's like to always have that hanging over your head:
November 4, 2011
So where was I this whole time?
In 2011, I was 19 years old and a sophomore at UCLA. I had just started living in my fraternity, gotten a new job at the student gym, and was soaking in the SoCal sun during my free time. Life was simple and it was good.
I received a call in late October from my parents asking if I would like to visit home next weekend. I resisted at first.
"I'm coming home for Thanksgiving in a couple weeks, can't I just see you guys then?"
Classic teenager reasoning. But with a little more persistence, Tuna convinced me to fly home on November 4th without raising any red flags on my radar. After all, life was simple and good, so a weekend trip back to Seattle for home cooked meals and sleeping in a bedroom that wasn't on the bottom floor of a frat sounded great.
The first red flag appeared when I saw my mom after arriving home. I remember getting out of the car and seeing her standing in the doorway to the garage. She looked tired. And thinner than usual. But as soon as she saw me she smiled, and I immediately dismissed the thought. Maybe she had a long week at work. Maybe she hadn't been sleeping well lately.
We had dinner together as we always did - my mom sitting to my left and Tuna to my right. We caught up and talked about school, the usual stuff. But I did notice an unfamiliar tension in the room. The energy in our conversation wasn't there, and when dinner was over, a serious expression came over my mom's face. Now, I don't remember the exact words, but the next few minutes went something like this.
"Hakan, we wanted you to come home because we have some news."
"Okay, what's going on?"
In my mind, I'm racing through what she could possibly have to tell me. What was so important that they literally flew me home, waited until the end of dinner, and were framing a formal, press-release like announcement. To be perfectly honest, cancer didn't even cross my mind. Not even close.
"These last couple weeks, we've been in and out of the doctor's office, and they found something. It's cancer."
I didn't know what to say. Or what to think. Or what to feel. I just stared back at my mom. Cancer? But, you're fine. Sure you look a little tired, but...cancer?! I looked over to Tuna still unsure of how to process what she had just said. He was looking down at his hands in his lap, and I could see his tears forming. And then it slowly started to hit me. Like being drawn into the current of a giant wave before it comes crashing over you. I tried to be strong and give her a hug for support, but I quickly realized that I was the one who needed it. I couldn't control myself, and I just began sobbing into her shoulder.
"How ironic," I remember thinking, "she's the one with the life-threatening illness, and yet she's the one comforting me."
The brunt of the therapy begins to take its toll.
First it's chemo. A cocktail of different drugs to attack the tumor as aggressively as possible. It's about 2 sessions per week with the rest of the days off to recover and get ready for following week. And all of the classic symptoms are present: the nausea, the fatigue, the hair loss. I was back at school of course, so I didn't see the steady decline in her health. And to this day it remains difficult for me to picture such a strong woman be brought down by this kind of treatment.
But it was only the beginning.
Tuna explains that the ensuing radiation therapy that came at the final 10 days of the year was even more drastic. The nausea more violent. The fatigue more debilitating. Diarrhea, loss of appetite, peeling skin, paresthesia. It's tortuous what we are willing to endure in the face of death. By the end of the 9th day, she was too weak to attend the final session on December 30th. She spent the entire next few days in bed.
Happy fucking new year.
January 30, 2012
The majority of January passes by relatively quietly.
She's given a lengthy break from chemo and radiation to recover and gather strength for her big surgery on the 30th. The plan is to remove her pancreas to eliminate the cancer as well as her gallbladder, spleen, and duodenum as they had been deemed unsalvagable.
I flew home to be with her and Tuna for the surgery. We all knew this was going to be a big operation, and I knew I needed to be there. But there were more important things on my mom's mind. You see, I had a general chemistry midterm the following week, so she must have reminded me at least 5 times to bring my textbook so I could study during her surgery.
Mom, are you serious? Bless her heart.
It was a grueling day for everyone. We arrived at the hospital at 5:30AM. The surgery lasted 14 hours. We would periodically get updates over the hospital phone, so we weren't completely out of the loop. It was getting late when the surgeon finally walked into the waiting room. He looked exhausted, but his mood was positive. The surgery was a success, and there were no complications. He also made sure to tell us that the only thing he ate all day was half a bagel.
Seriously, man? Whatever, as long as you didn't mess up.
There are few moments throughout this entire saga that I remember very vividly, and seeing my mom after surgery is one of them. The room we entered was dimly lit, and she was quietly lying in a hospital bed with the occasional beeps and chirps coming from the various medical devices she was hooked up to. She could barely turn her head to look over at us as we walked in. I had never seen her so weak and frail. Her eyes were half open, and I could see her attempting a smile. We stood around her bed holding her hands. After some time, she finally gathered the strength to speak.
"Hakan," she whispered, "were you able to study?"
I couldn't help but laugh. And I had a feeling that deep down, she was too.
Sometimes I wonder how her brain worked. She must have been in the most delirious state of mind coming out of surgery, yet the first thing she thinks about is if I'm going to do well on my exam. And that is such a poignant example of how deeply she cared about and supported anything I ever did. Showing this kind of unconditional love is the most precious gift she left me.
Spring to Summer 2012
This was a period of recovery and adjustment to a new life.
Adjuvant chemotherapy continued until she was tapered off in June. There were fewer sessions and the drugs were not as strong which made the side effects less severe. Of course, without a pancreas she was now a diabetic. Finger sticks, blood glucose monitoring, and insulin shots became a part of everyday life. She was rather obsessive about making sure her blood sugar was always within healthy limits, another classic example of her strong and stubborn character. Tuna would eventually convince her to get a permanent, wireless measurement and delivery system to automate some of those steps. She also had to take pancreatic enzymes with meals to digest fats. It was a new life, and she was up to the task. She even managed to park the jetski on the dock one day - an accomplishment unsurpassed by anyone to this day!
Around March we received mixed news about the biopsy samples that were taken from her surgery. The good news was that all 12 lymph nodes that were removed showed no signs of metastasis which dramatically improved chances of long term survival. The bad news, however, was that the surgical margins of her pancreas were not clean. In layman's terms, this means it's possible that not all of the cancer was removed during surgery, and it dramatically reduced chances of long term survival.
We were left feeling hopeful yet scared.
A serious setback.
After one of her regular follow-up appointments at the Seattle Cancer Care Alliance, two small lesions appeared on her liver and were eventually confirmed as metastasis. At this point you have a couple options:
Do nothing. Yeah right.
Start chemotherapy again. This is the most common option, but it's often ineffective. Why? Because metastatic and recurrent cancers often show resistance to conventional chemotherapy. It's like survival of the fittest. If a few cancer cells are able to squeak by during initial treatment, it's usually because they were the strongest of the bunch. So when they come back, they not only come back with a vengeance, but now the entire tumor is made up of chemotherapy-resistant-super-cancer cells (technical term).
Try experimental therapy. This had her name written all over it. And she wanted to try immunotherapy.
The only problem is that qualifying for clinical trials is not easy. There are many exclusion criteria that prevent patients from enrolling. But that's how the research process works, and you have to respect it. So, the search continued.
Mom decided to sell her dental practice.
With uncertainty clouding her future and production declining at work without her at the helm, this was the best decision for all parties. She sold her practice to a friendly husband and wife, a prosthodontist and general dentist respectively, who now own and operate Wallingford Smiles.
Finally, we qualify for a clinical trial.
An experimental immunotherapy in Rhode Island had just been approved for testing on human subjects, and she fit all of the criteria for the study. Initially, there is optimism as the study is supposed to have few side effects and target the cancer cells with high precision.
So in August, my mom and Tuna set out for Rhode Island and begin the trial. On the first day, they take a sample of her blood to extract and cultivate her immune cells. They are engineered over the next couple days to target proteins expressed in greater quantity on the surface of her cancer cells compared to her healthy cells. In theory, once the immune cells are given back to her, they should target and destroy the cancer cells to a greater degree than normal cells. This sounds great, until you remember that this is an experimental trial and not everything works exactly how you expect it to.
The engineered immune cells began targeting and destroying the inner lining of her intestines resulting in the most severe side effects she had ever experienced. Her inability to eat combined with the therapy-induced diarrhea resulted in a 30 pound drop in weight in just 3 weeks. Tuna describes this time period as "the worst 40 days of my life." Even worse than losing her was watching her suffer during this trial.
Well did the therapy work at least?
Unclear at best. Not really at worst. Two final biopsies were taken at the end of the trial, one from each lesion. While one showed necrotic tumor tissue (good), the other still showed active cancer (bad). All of that suffering for some mixed results. Patients who enroll in clinical trials don't get the credit they deserve for putting their lives on the line in pursuit of advancing the medical sciences.
Fall 2013 to Spring 2014
An attempt to restore normalcy.
Following the Rhode Island trial, my mom and Tuna returned to Seattle to rebuild her health. She had a food pump installed at home to feed her via an IV port. And within less than 3 months, she was back to her old weight ready to challenge me at ping pong.
In early 2014, she started seeing a new oncologist in the hopes that a change might result in more positive results. The doctor put her on a new chemotherapy cocktail to address the liver lesions, though it wasn't anything fancy. The side effects were more tolerable which afforded her a sense of regularity again. She and Tuna took trips to Vegas, Mexico, Turkey, and Los Angeles to visit me for graduation. Things seemed okay for a brief period of time.
The beginning of the end.
As things looked like they might be getting better on the surface, a new problem was brewing behind the scenes. An inexplicable, chronic back pain slowly began to creep into her life. Over time the pain became worse, and they tried everything to treat it. Acupuncture. Yoga. Injections. Pain pills. Vibroacousitc therapy. Chiropractors. Specialists. You name it. She tried it. But the pain only got worse and spread all over, and no one had a solution. It would eventually come to dominate her life. But even then she persevered. In the midst of all this, Tuna threw her an amazing 50th birthday party which she was able to enjoy with her family and friends.
How do you bring up the topic of death?
It was around this time that our new oncologist recommended stopping chemotherapy to focus on treating her pain. It's a difficult pill to swallow, but palliative care is one of those things that is often overlooked during end of life care. I highly recommend this book which provides powerful insight into this issue:
An unexpected complication.
One idea to treat the pain was to install a permanent pump that would deliver hydromorphone directly into her bloodstream on command. However, during installation of the pain pump, the needle of her insulin pump was wiggled out of its port. Thus, she stopped receiving insulin and her blood sugar skyrocketed overnight. The doctors had no clue what the problem was, so they administered liters of saline and fluids to dilute her blood and lower her glucose levels.
Over a span of three days she gained 30 pounds almost entirely of water weight. The doctors were puzzled again. Why wasn't the fluid draining? It was the cancer. The lesions in her liver were constricting a major vein that is responsible for draining blood from the lower half of the body. A stent needed to be placed to relieve the blockage, and the pre-procedural CT scan showed a horrifying picture of reality. With our eye off the ball treating the pain and no chemo to slow the cancer, it had spread. Everywhere. Below is an excerpt from a medical summary of her scan around that time.
May 10, 2015
Mother's Day. Her last good day.
Tuna and I both remember this day as the last one we enjoyed together as a family. With the liver stent placed, insulin pump repaired, and pain pump providing some relief, we were able to go to the Palisades for a Mother's Day brunch. It was clear that things weren't going to get better, but at least we were able to have this day.
May 27 to June 3, 2015
Her last week was an absolute blur.
It was like sprinting to the finish of an exhausting marathon.
Wednesday - the doctors ask Tuna if he thinks they need to start hospice care. He says no, still hopeful.
Thursday - reality sinks in. Tuna calls back and schedules a hospice nurse.
Friday - the nurse arrives. My mom and Tuna once again have an unimaginably difficult conversation.
"Am I dying?"
"Yes dear, I'm losing you. But I love you."
Saturday - after hearing the news, I come home from dental school which I had started at UW earlier that year.
Sunday - my mom's sister flies in from England to be with us for her final days. No one knows how much time she has left. Friends visit to say their goodbyes.
Monday - we spend a quiet day together as a family.
Tuesday - she decided to stop eating. I distinctly remember sitting with her on the balcony, overlooking Lake Sammamish and briefly thinking, "You know, this is actually quite peaceful." I only managed to take a single picture during this time, and wow was it difficult.
Wednesday, June 3, 1:15AM - she dies on her own terms with her family by her side. Finally, respite from the madness, relief from the pain.
Where do you go from here?
I share this story as a glimpse into a few lives that were touched by cancer. But as Tuna so honestly put it, "These were the motions, not the emotions." It's hard to put into words how that period of time actually felt for all of us. And we're not the only ones. This is happening to literally millions of people, every single year, all over the world. It's an impossibly complex problem which Tuna once again so eloquently describes:
"Cancer is a horrible disease. It robs you of your security, replaces it with fear. It robs you of your hopes and dreams, replaces it with uncertainty. It robs you of your physical strength, ability and energy, leaving you with memories of what you were able to do. Ultimately, after slowly stealing from you little by little, it robs you of your next breath, replacing you with memories of you."
So what do you do in the face of tragedy?
You do what she did. You bounce back. You look ahead. You hope. But most importantly, you act. We're an interesting bunch, us humans. We have this extraordinary capacity to identify the problems in our world, and an equally extraordinary capacity to solve them. It is with these lessons she taught me during her life and the inspiration she left in the wake of her death that I move forward more confident than ever that we will find a solution to the problem of cancer. After everything she gave me in my life, I would be remiss if I didn't give everything I have to join that effort. And that's why I started LiveSmyle.
It's a modest attempt to raise awareness, to educate, to make an impact. I can't think of a more meaningful purpose to guide me. And I can't thank her enough for giving me the strength to do it.
In loving memory, Dr. Tulay Kent (December 10, 1964 - June 3, 2015)