Cindy feels it is important to get her story out there to raise awareness and educate people on metastatic cancer. To illustrate how you have to be your own healthcare advocate, and how difficult it is to navigate our healthcare system especially as a woman, and how to live your life one day at a time.
Can you tell us a bit about yourself?
I'm a 52 year old mother of three adult children 31, 27 & 26. I am a licensed Paralegal and Certified Mediator, and I am part of the LGBTQ community. I don't think I'm a very complicated person. My likes are pretty simple: all children, animals particularly dogs, painting, gardening, reading, up-cycling furniture, and my greatest love is travel. I love meeting new people, eating different foods, and generally absorbing the culture. If I can travel with family that's icing on the cake!
What type of cancer do you have?
I have estrogen+ invasive ductal carcinoma stage IV breast cancer with metastasis to the bone. My bone lesions are in both hips, pelvic bones, right femur, right scapula, right clavicle, sternum and throughout my spine.
How and when were you diagnosed?
I was diagnosed in 2011 after two years of constant complaints of fatigue, migratory and increasing pain, and general malaise.
In 2009 I had a slip and fall which resulted in a concussion. I never really seemed to recover from the concussion despite attending the vocational rehab program at the General Hospital twice, 6 months of aqua fit, and my own regimen of healthy eating, exercising, and sleeping properly. Nothing seemed to help.
I became more and more frustrated because doctors were unable to pinpoint anything. My employment insurance company was becoming very frustrated with me and sent me to see a psychiatrist who thought my pain was caused by depression. He then sent me to a psychologist whose objective was to get me back to work. I started weekly visits and despite trying to explain over and over again that my symptoms were not depression manifesting as pain, I don't believe I was ever really heard.
As a woman diagnosed with depression, you are pigeon holed and it felt like no one was listening after that. I had one neurologist start off our first meeting with "Why are you reluctant to take antidepressants?" My file had preceded me but my response was "because I'm not depressed and it's your job to figure out what is wrong with me". I think they had a big red stamp marked "confrontational" on my file. At one point, I had my case manager screaming at me on the phone. If I just took the antidepressants, I'd make her life a lot easier. I eventually had to hire a lawyer to field communications with them because at this point, I just didn't have the energy to fight anymore. I was starting to question myself and reading up on depression. Could I really be "just" depressed? I am not minimizing depression because I understand the toll it can take on someone.
By February of 2011, I was in so much pain that I could barely look after my own needs but I had been told by the psychologist that I needed to work through the pain if I wanted to "help" myself. I understand the difficulty my family doctor had diagnosing me as one week I was in saying my arm hurt and the next saying it was my leg. She sent me to see numerous "ologists". At one point they thought maybe I had Lyme's Disease, then perhaps Fibromyalgia but nothing really fit with my various symptoms except, apparently, depression.
One day I asked my doctor what she would do if I was a new patient walking in with these symptoms and she said "I'd send you for X-rays". So, that's what we did. On Sunday March 6, I was getting ready to meet family and friends for brunch when she called and asked me to come into her office. I asked my sister and my girlfriend to come with me. Getting called in to your doctor's office on a Sunday is never good. There she told me that my spine was fractured and that in the absence of osteoporosis and because I had normal white blood counts, ergo not disease, she was certain that it was cancer. She asked that I go to the emergency department at the hospital right away. Then she said she would be more comfortable if we called an ambulance. I resisted the ambulance. I went for breakfast with my family and friends and told them what had just transpired. I had been walking around "working through my pain" for three months. I didn't have the same sense of urgency that she did.
The emergency room was a bit of a blur because after numerous hours of walking and sitting in an attempt to alleviate the pain and absorb the potential diagnosis, I was suddenly surrounded by doctors and nurses. I was placed on a backboard and put into a body brace. One doctor came in to the curtained area and asked my friends to leave. I asked that they stay. Not my first confrontation with the medical profession and certainly not my last. Details are fuzzy here. He explained that I had metastatic cancer but because of my specific injury, they were unable to find my primary site. They suspected breast cancer and it was determined that a biopsy of my spine was required. When my sister asked about the prognosis, he said in an offhand way "she probably has six weeks" and walked out. To this day, I wonder if he misunderstood the question and did he realize the impact his words had on all of us especially my daughter and sister. On March 17, I had spinal fusion surgery on my L3, L4 and L5 with all three grafts from my left hip as my right hip has cancer lesions. My left hip has since developed lesions as well. Oddly enough in the past 5 year,s not one doctor, and I've seen many, feel that I require antidepressants. Being vindicated isn't much fun.
Can you explain what metastatic breast cancer is?
Metastatic cancer simply means that the cancer has spread from the primary site to other areas of my body via the blood stream or lymph system. To simplify, I have breast cancer in my bones and not bone cancer.
Upon diagnosis, you were initially given 6 weeks to live and now you are going into your 6th year. Has this changed the way you live your life? What are the challenges you face? Are there any silver linings?
Once I was admitted to the hospital for spinal fusion surgery and the biopsy, CT and MRI results came back, they were able to determine the type of cancer we were dealing with. I began seeing an oncologist and it was determined that my prognosis could reasonably be two years given the spread.
Cancer is very isolating especially if you have metastatic cancer. People have difficulty dealing with your imminent demise. Friends are still moving forward and planning for the future. Work friends drift away. People I played sports with are no longer in touch. If you are single, dating is a nightmare, when do you reveal the fact that you have metastatic cancer without divulging information to strangers and yet not mislead a potential partner? Everything is about balancing.
For the most part, I'm a fairly positive pragmatic person. There are days when being upbeat is a real challenge but I owe it to myself to make the most out of everyday while balancing the need to rest my body and soul.
Had I known I was going to live this long and feel this good, I might have returned to work earlier on in my diagnosis. I feel that is a lost opportunity that has created financial constraints.
I vacillate between trying to live in the moment and still be ready for the future. It's a difficult line to walk. Do you spend the money? Eat the cake? Burn the bridge?
Had I known I was going to live this long, I would not have sold my house.
Having cancer has given me the freedom to truly be myself, seek my truth. Knowing the end is near gives new meaning to "don't wait until tomorrow". It's an opportunity to truly embrace everything you do.
What would you like people to know about metastatic cancer? What should people not say to someone who has cancer?
Metastatic cancer kills, there won't be any miracles or remissions. The best one can hope for with metastatic cancer is that there is slow or no progression until the medication stops working and you are switched up to a different medication and all the side effects that those bring. I know most people mean well and have a difficult time dealing with someone who is dying. Having to educate people becomes tiresome when they argue the point with you or steamroll your response and tell you that you have to have hope. I don't try to hide my cancer and in fact have no problem telling people about my cancer but inevitably I get the "you look so good though". On my bad days, I want to ask compared to what, someone that is dying? Again, I know being glib isn't the intent but it sometimes feels like a denial of what is going on internally if the outside looks okay.
Language is a new trigger for me. I have difficulty with everything being geared towards those who have passed and those who have survived but there is a whole group of us that are living with the knowledge that we are dying. We've made up our own word, metavivor.
People don't lose their battle to cancer. A battle implies that the outcome wasn't predetermined or that there was a possibility of either side winning. That isn't the case with metastatic cancer.
What would you like to say to women facing a metastatic cancer diagnosis? What advice would you give to someone who just received news that a loved one has been diagnosed with cancer?
It is different for each person but take the support offered. Get as much accurate information as you can handle. Google is not your doctor, don't self diagnose. If you truly do not connect with your doctor, ask for a new one. I can't even begin to discuss the number of times I've had to put my foot down with my various medical teams but I have a much better fit with my current doctors because of it. If you want more time or information regarding a process then be clear about asking for it. You are the doctors' 300th patient but this is your one body and life. Your diagnosis impacts everyone around you. It took me a while to realize I wasn't just dying but my children were losing their mother, my mother was losing her daughter, my sisters and brothers were losing a sister but in the end, it was still my disease, my body, and my journey and my choices had to feel right for me.
If your loved one has been diagnosed try not to inundate them with self help Internet articles and recipes on cancer fighting and miracle cures. Hearing the government is holding back on a potential cure isn't helpful. Try instead to accompany them to appointments, offer them a drive, take the kids for a day, clean their place, do a load of laundry, show up for an impromptu girl's night and just listen without trying to placate or fix anything. Let them take the time to figure out their beliefs and hopes.
I also found it difficult when I was laid up in bed post surgery and on a multitude of medications to answer when people said "let me know if you need anything". That put the onus on me to think and coordinate when I was barely able to function. If you want to help be concrete in your offer. I'd like to come over on Wednesday or Saturday to do your laundry and change your bed, does that work for you? I'm making chicken soup, do you like soup? Can I bring some over Monday morning? These types of offers remove the responsibility for thought from the person in crisis without taking over.
What are your hopes for the future? What is on your bucket list?
My hope is with new research and medications that metastatic cancer becomes a chronic disease and not a definitive killer. The average life expectancy of a woman with metastatic cancer is 22-36 months post diagnosis. In order for that to happen, more funding towards metastatic cancer research will be required. Very little is currently spent on the incurable because it's just not as lucrative. I'd like to see honesty in advertising regarding the collection and spending of funds for cancer research.
For the longest time, I didn't think I had a bucket list but over time I realized there were things that I truly wanted to experience before I'm not physically able. It’s a race against time.I would love to travel to Africa either Kenya, Tanzania or South Africa and go on safari with my sister or one or all of my children.
Thank you, Cindy, for courageously and openly sharing your life with us. We wish you time.