God has a hand in this and whatever He decides is what it is.–Charlene Inch
Seated on the sofa in her living room, Charlene cautiously begins to talk about the disease that has haunted her the past decade of her life. She is tired, understandably so, she has finished her twelfth round of never-ending chemotherapy since finding out at the end of 2017 her cancer had returned. Her white wisps of hair glowed in the remaining light of the day. Her face is weary, but determined. We had planned to sit down and discuss her survival story over a year ago, but the timing had never been quite right.
Now time is precious.
As I sit listening to her recount her story, my eyes are drawn to her wall where a painted picture hangs, You are my Sunshine. A simple children’s melody, yet something so impactful that has remained with me even after I left Charlene’s home.
Charlene has always been a force–to be reckoned with or as an invaluable ally–she has a vibrancy and a will that is unmatched. As in life, so she faces death, with that same determined attitude that refuses to go quietly. She emphasizes her desire for time–time with her sons and their families, time with friends, time to live life.
It was 2008 when her life was forever changed by cancer. She had gone to her family doctor, there was a painful sensation down in her groin area, and she had gone to him for help. He prescribed pain medications, but she hated the way they made her feel, so she stopped taking them. She returned to her doctor. Again, he prescribed pain medications and sent her away. She returned time and again, and each time she was prescribed pain meds. The office staff began to treat her like she was a drug seeker, and she could feel their judgement toward her increasing. It was finally when the doctor had refused to write her another pain medication prescription that she finally told him she didn’t want one, she hadn’t been taking them. He instead attempted to write her a prescription for an anti-depressant. In frustration and helplessness, she tore it up and threw it away. She then asked for a referral to another doctor.
It was a process of steps that would reveal her fate. Dr. Vukojevic in Belleville, a gynaecologist, ordered a series of routine tests. While the results were normal, the doctor questioned Charlene about whether she experienced bleeding while undergoing a pap test in the past. Charlene had never noticed, and that occurrence bothered the doctor so much she ordered further testing. A colposcopy was ordered, a procedure to more closely examine the cervix, vagina and vulva. The results of that procedure were also normal, but Dr. Vukojevic was not satisfied, and something was bothering her. She ordered Charlene undergo a LEEP excision.
Curious, Charlene went home and looked up the procedure online. She discovered that the procedure was used to check for cervical cancer. That piece of information was alarming, and she decided to conduct a self breast exam. She discovered a lump. Her initial thoughts were denial, it couldn’t possibly be cancer. She waited a few weeks before making the phone call to her family doctor. She was tired of the incessant accusing looks, like she was some sort of hypochondriac. When she finally did call to make an appointment the secretary was less than thrilled to hear from her. She was prompty told there were no openings. But then Char revealed she had found a lump in her breast. Instantly the secretary’s tone changed. She was placed on hold and then almost like magic, there was an opening the following Monday. Her family doctor sent her for a mammogram after performing a manual breast examination.
Charlene refused to go back to her family doctor though, and there was no way she was allowing him to give her the diagnosis. So she chose to have her radiologist read the results after her mammogram and subsequent biopsy. That was November 20, 2008. And then a day later on November 21, 2008, Dr. Vukojevic diagnosed her with cervical cancer. Her life was forever altered, and she was caught up in a whirlwind of tests and scans and surgeries and treatments. Nine years later, when life had settled back to a normal pace, the last thing she had expected was to find cancer defining her narrative once more.
It wasn’t anything extraordinary that made her think, “Oh, I have cancer.” She didn’t even consider cancer as a possibility at all. She had been working at Cones and Shakes, the business she co-owns here in Prince Edward County, and she had been experiencing some pain in her arm and back. She attributed it to possible exertion from her routine scooping, albeit the pain was in the opposite side from her dominant arm. She had a new doctor now, and he suspected the same. He ordered a cortisone shot to help alleviate the pain. And then as if her body were trying to communicate with her, she experienced several different ailments in succession that brought her to her physician’s office again. She had a urinary tract infection, a kidney infection, and a gastrointestinal flu-like illness, and she pleaded with her doctor, “What’s going on?” He asked her about the stress in her life, and Char acknowledged that stress could be a mitigating factor in wearing down her body’s defences. In an effort to aid Charlene’s health he offered to write her a prescription for an anti-depressant, but all she could think of was her experience with another doctor who had tried to do the same. She politely declined and instead bargained with him. She wasn’t due to meet with her oncologist for another two years, and if he would refer her to see the oncologist and she gets an all-clear bill of health, she will agree to take anti-depressants and seek counselling. He agreed. But her back pain was very real. She pushed him a little more and he also ordered an MRI.
Her oncologist was surprised to see her so soon. Charlene described her symptoms and because of her history they ordered a CT scan. This is important: her MRI results were returned one day prior to her CT scan results, and according to her doctor’s office the results came back clean.
Sitting in her oncologist’s office the nurse was surprised to learn that Charlene had come alone. She attempted to disguise her concern as she closed the office door. Charlene didn’t have any reason to suspect she would have needed someone for moral support. But she was confused and stunned when her oncologist said, “your MRI results are clear Charlene, but I don’t have good news for you.” The doctor revealed she not only had suspicious spots on her bones, but she had spots showing up in her lungs as well. Suspicious. Charlene knew what that was code for; “we think its cancer”. But the most disturbing part, was the MRI had failed to pick up a spot on her spine. It was a frightening realization for her. If she hadn’t pushed for her appointment with the oncologist she could have been walking around for who-knows-how-long not knowing she had cancer again.
In shock she left the doctor’s office and texted her girlfriends using three expletives in rapid succession. Their impact was felt immediately.
Her friend Suzie charged out her front door when Charlene pulled into her driveway. She desperately asked, “Not cancer?” But Char couldn’t provide the answer she was hoping to hear. In all likelihood, her cancer had returned with a vengeance.
Her doctors put her on a study drug and a bone strengthener immediately. They believed, because her cancer had been estrogen and progesterone positive before, it would be again. But the medicines weren’t working. The spots in her lungs were growing larger. She was finding it difficult to breathe. Her doctor did a biopsy on the tumours in her lungs and unlike nine years ago, her cancer was now the opposite of what it was before and the drugs were not ever going to work. Because her cancer is now estrogen and progesterone negative–there are no study drugs, no experimental treatments, no sign of a cure–she has been offered chemotherapy as a comfort measure. The hope is to slow down the cancer, give her more time and help shrink the tumours so she can continue to breathe.
When the time came for her to tell her family, she called everyone for a family dinner. Her family is quite large and is comprised of several siblings, in-laws, nieces, nephews and grand-children. They have always been a close-knit clan who would often congregate at Charlene’s home for dinners and board games. Only a few short weeks prior they had gathered in the same fashion for another family dinner. It was that night where they learned their niece had been diagnosed with thyroid cancer. Emotionally spent from the last time, everyone was trying to guess what the reason was for Charlene to host another family meeting again so soon, because it couldn’t possibly be cancer. With most of her family present, everyone sitting around the room, she shared the news that she desperately wished weren’t true. Like she had been, they too were stunned. And with tears they rallied around her to offer support.
The hardest part for her to face has been watching her children endure the pain of her new diagnosis. She watched as each of them responded with emotion when she shared her news. Aaron, her youngest, had to drive home alone to Ottawa after being told. He wasn’t able to be at the family meeting so she shared with him first. She knew if he heard it from anyone else he would have been angry. There relationship had been strained in recent years with a few ups and downs, she wanted to honour him and make sure she was the one to tell him. Her son Chris accompanied her to her appointment when the doctor told her of her estimated prognosis*. It was hard for him sitting in the doctor’s office being told when his mother was going to likely pass away. Chris’s girlfriend Nicole copes with her grief by mothering Charlene. She makes sure she is eating healthy and taking care of herself. She wants to be at every appointment as often as she can manage. And she checks in with her regularly. Her love and devotion to her mother-in-law is deep and enduring. Her oldest son, Sean, admitted that he was terrified when he heard the news. Nine years ago, her cancer was a shock and he remembers not wanting to believe it was real. But now the notion of losing his mother is a very real probability and he isn’t sure what that looks like. He maintains his composure as he talks about it, but he looks down while he speaks, not wanting to make eye contact. Its like he is trying to be strong for his mom. Charlene mentions how appreciative she is for Sean. He moved home to live with her the last time she had cancer. He had been hoping to save money to travel, and once her cancer was done he hoped to go and see the world. Now her cancer had returned, his plans for travel have been put on hold. She encourages him to go, no matter where he is in the world she is only an airplane ride away, but she senses he won’t go. Not yet. And Aaron had been like a caregiver for her the last time. She senses that his living so far away takes a toll on him emotionally and he wishes he could be closer.
As a Mom its been hard to see her children suffer because of her. She thinks of her own Mom, and reflects on a memory from nine years earlier. She would often go and visit her mom who was living in a long-term care facility. Her Mom had advanced stages of dementia, and Charlene wasn’t ever sure if she fully understood that her daughter had cancer. She would come and sit with her, and her mom would rub her bald head and kiss it while they cuddled together. It was a tender moment, but Char couldn’t help but be grateful that her mother didn’t have to endure the pain of watching her daughter fight such a horrible disease. Now watching her sons deal with fear and anger and sadness, all she wants to do is take the pain away. But she can’t. And it makes her feel helpless.
And life has been painful for them all in recent years. Charlene is still going through the process of a divorce. In her grief she has had to endure loneliness and loss, and her sons have witnessed the breakdown of their family. Its not been an easy aspect of their lives, and it still lurks in the forefront of their minds like a dark cloud even now as their mom goes to chemotherapy once a week. But Charlene is fiercely determined that her life isn’t over yet. She told me her life is lived between chemo appointments, and she is making the most of every moment. She took her sons on a trip to the Bahamas this past winter, and this summer a few of her girlfriends are taking her out West to see the mountains. “I’ve never seen the mountains,” she says. And without apology she proudly proclaims that she is going to fight this cancer with every last breath in her body. “I believe I can fight this with attitude and the support I have in my life and prayer.” She adds, “I don’t want to give up and I don’t believe I’m going to go when they say I’m going to go.”
But more importantly, she emphasizes she wants to help and encourage other people. She admitted she was sometimes afraid to admit the cancer had come back. For nine years she was a survivor, and she hates to think by admitting to someone her cancer had returned–especially to another cancer survivor–that somehow it will instil fear in them of their cancer returning also. She adamantly reminds other survivors to ensure they get testing at 5 years and beyond. She emphasizes its the patient’s right to ask for this testing, and she can’t stress enough how important it is.
And she is determined to find the joy in every situation, even cancer. She recounts a story to me from earlier that day when she was sitting in the packed waiting room in the Burr Wing of Kingston General Hospital. And Char begins to giggle. On one of her first visits to the Cancer Ward she didn’t realize the first floor is actually one floor above the entrance lobby, and the elevator is double sided. Patients enter on the ground floor, press the button for floor 1 and then need to turn around in order to step off the lift. She had felt foolish the first time when it had happened to her. And then weeks later she found her self sitting amongst a solemn assortment of cancer patients and their friends or family. And while they were sitting in abject silence, the elevator doors kept opening, revealing a lone gentleman inside who was staring at the opposite door. The doors would close, and then open again, and the man was still there—staring straight ahead. It was like a scene out of a Mr. Bean short. The hilarity of the circumstances struck Charlene, and stifling a hearty laugh she started toward the doors before they could close for a fourth time. “Someone needs to help this man,” and as she stood up from her chair she called out to the man, “Sir…SIR.” Resisting temptation to pretend to be the voice in the elevator and further the trick, she instead caught his attention. It took him by utter surprise when he learned that the elevator did indeed open from both sides. He felt as foolish as she had. But every patient at Kingston General Hospital, Burr Wing experiences this embarrassment. Charlene was still giggling about it while sitting on her sofa, wrapped in a pink fuzzy blanket.
Sometimes she doesn’t even think about the cancer. She doesn’t feel better, but it doesn’t consume her thoughts. Others will be visiting with her, and they’ll share something painful from their own life. And as if they come to their senses and realize who they’re speaking to, they’ll apologize and contrast it with what Charlene is going through. She shakes her head and encourages her loved ones to never apologize for the little things. She cares deeply about the things that affect the ones around her. She doesn’t want anyone to feel they have to excuse their own life cares just because of her illness. She often is thinking of ways she can be there others. Her niece doesn’t live close by, and she lamented how she wished she could be closer so she could feel the love and support of her family around her. She too is dealing with cancer, and Charlene knows better than anyone how lonely and difficult it can be. She rallied her brothers and sisters to try and arrange a road trip to go see her. She wants to make it known that her care and concern is just as strong for her family even though she is fighting for her own life.
“I’m not afraid to die.” She says. She speaks briefly about her funeral, a practical thing for her to think about. She has discussed it with her sons and the funeral home–her wishes have been made known. She stated plainly though her funeral is not her choice. The funeral is for the people who live, and it is her desire for the people she leaves behind to simply grieve the way they choose. If she could imagine it though she pictured an intimate gathering, where people could sit around and talk and share food and drink and laughter. Like the family dinners she often hosted at her home, she would hope her legacy would be carried on in the same fashion. And when she looks at her boys, her talented and diverse loves of her life, she sees the best of herself in them. “They each have my heart. They are compassionate and caring.” And really, its all she could ever ask or want for her children.
“I am all about laughter,” she says finally. “I’ve always been a bit of a nut.” She has a fervent joy that radiates energy and hope even in the midst of impending sorrow. And that was what struck me so deeply about that picture on her wall. She is sunshine to so many people. And it’s what makes the end of her journey so difficult to comprehend. A woman who has lived her life with abundance and vibrance and love will be sorely missed by the people she has had the good fortune to know.
But her life isn’t over yet. And neither is her story.
*People of PEC will not publish the results of a prognosis. Even though these details were shared, out of respect for family and friends those details will not be made public by this online publication.