Sadly, Agnes Kwasnicka passed away surrounded by her loving husband and family on Sunday, April 1, 2012 at age 36. Agnes attended Retreat Yourself West 2011 and Survivor Conference 2011 inspired, supported, and gave a lot of herself to her peers. If you had the chance to talk to her–even just a few minutes–you know the kind of woman she was. Agnes was devoted, driven, sensitive, crafty, caring, and so brilliant. We feel privileged to have known her and will remember always.
Name: Agnes Kwasnicki
Hometown: Toronto, ON (originally Winnipeg, MB)
What was your diagnosis? Gastric Cancer (Adenocarcinoma), Stage 4
What school did you attend?
U of Manitoba, UBC, U of Toronto
What was your level of education at the time of your diagnosis?
I had completed a Bachelor and Master of Science and my MD degree. Yes, I was a “school-a-holic.”
What are your career goals?
This is a tough question to answer when my future is so uncertain. In general, I want to be happy and fulfilled in my work and know that I am making a difference in people’s lives.
What is your occupation?
I am a physician (currently on medical leave) specializing in Family Medicine and Addiction Medicine
Your Cancer experience:
How did you find out you were sick? What led to your diagnosis?
My life changed in unimaginable ways on November 8, 2010 when I got a call from the office of my dermatologist who removed (what appeared to be at the time) a “benign-looking” cyst on my belly. The urgency with which the receptionist suggested I come down to the office made me jump in a cab ASAP. In the doctor’s office the words “metastatic carcinoma” hung in the air as I sat in stunned silence. This was a mistake, obviously! I was a healthy 35-year-old with what seemed like no major medical problems. I rode my bike 45 minutes to and from work, for goodness sake. But something inside me knew it wasn’t a mistake. Thank goodness my husband (my angel) was just a block away to wipe away the tears and help me to not fall apart.
From that day forward, an avalanche of appointments and test ensued. I became a “professional patient.” Mammograms, CT scans, MRIs, bone scans, oh my. Even before we knew what kind of cancer I had we knew it had spread to several locations; skin, bone, abdominal cavity, colon, breast, and possibly ovaries. I felt like my whole body was being invaded by this “alien.” Fortunately my brain, lungs, and liver were clear. Phew!
Initially the thinking was that the primary (the tumour from which the metastatic lump originated) was in my breast and so the search began there. With no clear suspicious breast lesions, an astute oncologist thought to look in my stomach, seeing as I had such a long history of digestive problems. In early December I was “scoped” and the cancer was found. All the other pieces fell into place after that. The pathology confirmed that I had metastatic gastric (stomach) adenocarcinoma, Stage 4. The statistics for prognosis of this disease are very poor; dismal really. But who believes statistics anyways?
Finally having an answer, a GI oncologist, and a plan made me feel relieved despite all the aforementioned bad news. I was set to start chemotherapy and take it “one day at a time.” As luck would have it, things did not go according to plan (something a control freak like me had to adapt to quickly) and my chemo start date was pushed up to January 1. Happy New Year! Although I was technically admitted to hospital on December 31, I was allowed to go home to celebrate the New Year with my friends and loved ones. It was a wonderful way to spend the last day of 2010; gathering strength and courage from my friends to start treatment first day of 2011. And so it began…
What year was it? What was your age at the time?
2010, 35 years old
In which hospital are/were you treated?
Princess Margaret Hospital
What were your first thoughts when diagnosed?
“This can’t be real.”
How did your family react?
Shock, horror, tears, hope, encouragement. Love, mostly.
How did your friends react? Were you treated differently, or did things remain the same?
The nearest and dearest of my friends rallied around me like never before. I felt so loved. Some people I would never expect to be so giving become one of my most valuable supports. Others unfortunately disappeared.
What did your treatment consist of?
I started chemotherapy on January 1, 2011 as an in-patient. The treatment was to consist of three medications (Epirubicin, Cisplatin, and Capecitabine) with the first two given IV every three weeks and the latter taken orally twice daily. After the initial adjustment things became pretty routine (chemo every three weeks, feeling sick for the first week) except for some delays in treatment due to low white blood cell counts. Now I am taking an injection (Nupogen) to bring my white blood cell counts up.
Due to the advanced nature of my cancer, surgery was not an option. I am thankful for this as I treasure my stomach and eating and would have a very hard time parting with it despite the pain it has caused me.
At first there was some discussion about radiation treatment for my bone pain from the metastases, but that would delay my chemo. So we decided to try other approaches to manage this pain (pain medication and an IV medication for the bones called Pamidronate) and hope that starting the chemo would also help this pain. We were right and I am happy to report my pain is well controlled and I can do most things I want to now.
Describe the non-medical side (how you felt physically and emotionally, side effects, etc.)
Physically, I think I have been quite lucky. I’ve had very little nausea, one of the dreaded fears of chemo. Although I had low white blood cell counts, I have not had febrile neutropenia (a severe infection). I have gained weight and am able to eat better than I have in years. My bone pain has improved substantially. I still suffer from fatigue and pain, mostly residual bone pain and belly pains. Some of the treatments like the Nupogen and Pamidronate actually make my bone pain worse temporarily. The oral medication causes hand-foot syndrome which is drying, peeling, redness, and pain of the palms and soles of the feet. My medication had to be reduced as I was having a hard time with this.
Emotionally, I have had ups and downs as many people with cancer do. Some days I have hope and strength and want to keep fighting. Some days I am scared, hopeless and tired of fighting. I have been seeing a fabulous counselor to help with these issues and use yoga and meditation to stay grounded.
What is your current medical status?
I just completed my ninth round of chemo. There is no clear protocol to treat this cancer in my age group so I am going to try to keep going with the chemo as long as my body can take it. I had one CT scan that showed some regression (shrinkage) of my cancer but the last one showed “stable disease” (that is no change, bad or good). I feel stronger and better with each passing month and am hopeful that I will beat the odds.
How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?
Life took a 180 degree turn since my diagnosis. I was a crazy workaholic that made little time for myself and family. I was in a perpetual state of stress and sleep deprivation. I rarely thought about the future and what was truly important in life.
Since being diagnosed, I have stopped working. As difficult as this has been, as being a physician was a large part of my identity, it has given me time for myself. I have been able to do things I never had time for (reading, knitting, cooking, yoga, getting together with friends) and has allowed me to try new things (balcony gardening, meditation, sewing). It has also forced me to reevaluate the way I was living my life. It made me think about the future and what I really want to do. Is career advancement the most important thing in life? Should I always be putting myself last on the list of people to take care of? Last but not least, I am getting sleep! I did not realize what a state of severe sleep deprivation I was living in until I learned to get a full night’s sleep.
What is the toughest part of your challenge?
As a young person with advanced cancer, isolation is a daily feeling. Although I have plenty of support form family and friends and attend support group for cancer survivors, I am usually the youngest person in the group. Most people with advanced cancer are much older than me and have different issues to deal with.
For a control-freak like me, the loss of control I have felt throughout this process has been the hardest adjustment. The “let go and accept that I cannot plan for the future with any certainty” has been challenging. Although none of us know what the future holds, for me even planning a month ahead comes with all sorts of emotional baggage. The uncertainty about the future is most frustrating. I had all sorts of plans in place for my career and personal life that have had to be put on hold. Living day-by-day has its benefits though. I try not to stress and worry too much and just enjoy every minute I have on this earth.
What was the best lesson you took away from your challenge?
One of the most valuable lessons for me as a physician has been to see what it is like to be a patient. I now appreciate the difficulty of not knowing what is going on, of not being able to control my own treatment and of putting faith in my physicians. It has made me empathize that much more with my patients. Hopefully this will make me a better doctor in the future.
On a personal level, I have learned to make time for things that are truly important and meaningful in my life. Cancer should not have needed to happen for me to learn this lesson but some of us need more of a “kick-in-the-pants” than other to get this message.
What really motivates you to keep going while you are sick?
I need to stick around for my husband, my dogs, and my family. That is the message that keeps ringing in my head. There are so many things I still have not experienced in life—many I can’t even imagine at this point—that I feel like I need more time. I am not ready to go yet. At the most physically challanging moments in treatment I try to remind myself that it will eventually get better.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
As trite as this might sound, sometimes I feel like cancer was a “gift” that made me stop and open my eyes to what my life had become and how to make it better. Don’t get me wrong, I still hate the cancer and if there was a return policy I would be the first in line for a refund.
Before my diagnosis I was always on the go; rush, rush, rush. Any time waiting felt like a waste of time. I am more patient and calm now. I have had to learn this seeing as hospital visits inevitably involved lengthy waits and often frustration.
What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?
My only risk factor for stomach cancer was that I had Helicobacter pylori infection years ago (this is the bug that causes ulcers and increases the risk of stomach cancer). If you have indigestion, reflux or chronic stomach pain, get tested for this bug and get treatment. Even if the bug is gone, if you feel something is still wrong, get scoped (where they send a camera down your throat to look in your stomach). Don’t ignore symptoms even if you think you are the healthiest person in the world. Probably most importantly, design a life that nourishes you with good, healthy food, movement (i.e. exercise) and peaceful, stress-free days.
Did you attend any support groups during your challenge?
At first I was reluctant to attend groups but eventually realized I needed them. I attended the Healing Journey Program at Wellspring and recently started to go to 20s and 30s support groups at Wellspring and Gilda’s Club in Toronto. I also participate in many online support and discussion groups.
What was it like? Did you find it helped?
It has been mostly helpful. Sometimes I felt out of place but more recently they have helped me to feel less alone and isolated.
How are you connected with Young Adult Cancer Canada?
I found YACC recently while searching on the web. I have only recently started to read the profiles and am so excited that this group exists. I am looking forward to being a support for others and hopefully attending their retreats and conferences in the future.