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Just a few weeks into 2014 my 20 year old daughter went from working two jobs to facing a deadly disease - a very rare, and very fast-growing cancer.
In quick succession she had two surgeries. One to remove a 5.6 cm mass that was diagnosed as Embryonal Rhabdomyosarcoma of the uterine cervix. A second to remove any remaining visible cancer cells.
For parents of a young adult about to stare down the challenge of fighting cancer, here's what I learned…..
Your life is ruled by appointments, and, the unexpected. So get your workplace on board. You may at any moment need to abandon what you are doing to rush your daughter to Emergency with a temperature of 103, an infection, or some weird and intense jaw pain that causes speech paralysis. Knowing your boss is cool with whatever you need to do will go a long way to reducing your anxiety.
All those appointments mean you are about to become a frequent flyer when it comes to parking. At first I lived in the naïve assumption that I could accurately guesstimate how much time to plug the meter. One and a half hours? Three hours? It took me a few parking tickets to realize I would just have to suck it up and pay for the whole day. You are guaranteed going to be longer than you think.
In part that is because hospital appointments are not like appointments in any other business or profession. It seems nothing - except sometimes surgery - starts on time. You will indeed wait in those waiting rooms. Often with no explanation. Although from what I can see it's easy to figure out why. For example, in the case of blood test appointments - it would appear Princess Margaret tells dozens of people to all show up
at the same time. For us an hour wait is the norm. It's a thing. Everyone seems to accept it. So we just go with it.
Striving for calm
Cancer is a sobering reminder that aspects of our lives are not in our control. As parents of course the test is how we conduct ourselves in the face of a situation that is so-unfair-and-I-am-freefalling-out-of-control please-make-this-stop! It's a test because your children – no matter their age - are watching you. Always. They take your lead. I certainly felt scared and overwhelmed. My method of getting traction and striving for calm was to plow into the literature. Journal studies, Google, and the health care professionals working with us.
Elle did the same – even more so. She came across a number of online crackpots who explain the reason she got cancer is because of low self-esteem and other such nonsense. And guess what – they happen to have some miraculous cures. We had great laughs when we came across these nitwits.
Our intelligence gathering was empowering. It gave us a better grasp of the disease, treatment options and projected outcomes. Plus it allowed us to raise informed questions with Elle's doctors and oncologists. Do anti-nausea drugs cause dry skin and pimples? Will chemo affect her reproductive organs? Did you know the anti-nausea drug Ondansetron has a Health Canada warning for serotonin syndrome?
We went to every appointment with my Blackberry full of questions and me armed with a clipboard and pen to take thorough notes - that way Elle could simply listen, and we could later review what had been said.
Talk about overwhelming
Elle's two surgeries were followed by seven months of chemotherapy. And once again - talk about overwhelming. We read all about hair loss, mouth sores, nausea and vomiting, constipation, diarrhea, jaw pain, fever, low red blood counts [red blood cells carry oxygen to the tissues in your body], low white blood cell counts [white blood cells help your body fight infection] , low platelets [a type of blood cell that helps blood to clot]. The list of chemo side effects seems endless and nasty. And, it seemed like Elle got them all.
All I can say is – get out front of the nausea and mouth pain. Elle abhors drugs. She tends to grin-and-bear it. On a pain scale of one to 10 she will silently endure 10. This does not work when dealing with cancer side effects because the pain can last up to several days. By her last treatment we finally convinced Elle to tell us when her pain reached a two, and she relented to some relief via narcotics. You will become an expert on cancer drugs and narcotics, their side effects and dosages. I know Elle appreciated having a second set of eyes vetting the frequency and quantity of her drug regimen.
Beyond the physical effects, cancer takes a mental and emotional toll. The disease can be isolating -- more so as a young adult because you are in a minority. Most days in chemo daycare, Elle was the youngest person by decades. In addition, the severity of the chemo side effects compelled her to leave both her jobs. She no longer had a source of income (except for some government disability cheques, but they didn't last long), and her career was put on hold. Her independence and the ability to do things she loved such as running or working out were sidelined. All of this understandably caused her anxiety. As much as I reassured her all this will pass and she'll be back on track in time – it wasn't enough. Thank goodness for UHN's Psychosocial Oncology and Palliative Care team, including the lovely people at ELLICSR – all of whom provide a wide range of support and counselling if so desired.
Working WITH your care team
Throughout chemotherapy it seemed no two treatments yielded the exact same pattern of side effects. On one occasion a new anti-nausea drug induced a serious dive in Elle's blood pressure and consciousness, requiring quick intervention by one of the nurses at chemo daycare. And one weekend was spent at TGH Emergency to deal with infection. All I can say is be prepared, expect the unexpected, stay calm, and have all the Princess Margaret on-call numbers at your fingertips. You will use them.
It's important to remember you are working WITH your care team to make decisions about treatment and procedures. For example, at the outset it was suggested that with the volume of blood tests and chemo treatments Elle should get a port-a-cath or a pic line to allow easy access to a suitable vein. Both are invasive procedures, with the port-a-cath being awake-surgery where an incision is made just above the right breast. Elle kept wavering between these options. We booked and cancelled both procedures a few times. She finally confessed she would rather endure multiple needles in her wrist and forearm rather than allow more scarring of her body. This is a personal and perfectly understandable decision. The consequence though is that because Elle has 'baby veins' she encountered a few exasperated nurses who pressured her to get a port-a-cath because they could not find a vein on the first few needle attempts. Elle stuck to her guns on this one.
This primer is by no means exhaustive. No two cancer diagnoses or treatments are the same. And I hope other parents and young adults will comment with their own experience so as to help others about to face this battle.
But here is one universal truth of which I am certain.
Regardless of the illness, when patients and families enter a hospital there is a feeling that overcomes us. Of course we are scared because a loved one is very sick. We are in position of vulnerability. But there is something else that happens. It is borne out of fear. The fear of being a 'bad' patient or family. As a result we don't ask too many questions for fear our doctors think we question their judgement. And we don't ask for quicker results and faster answers for fear of being too pushy and angering our caregivers.
This self-censoring is known as 'patient angst'. It is the notion that advocating too much will somehow compromise care. Despite working at UHN I was surprised to discover that I too felt this angst. Then one day early on I happened to be in conversation with former UHN CEO Bob Bell. When I relayed this observation about my fears, his advice was simple: "Speak up." It was the most empowering encouragement I received during Elle's nine month journey. So - in your journey as a patient or parent of a patient, if you find yourself wavering and fearful about advocating - keep Dr. Bell's mantra in mind - 'Speak up'. It works.