A New Year: Resolutions from a Cancer Survivor's Spouse

It's been awhile since I've delivered an update on Kavan's condition and recovery after a year-long hammering from chemotherapy. At times I look upon our experiences over the last year as if it were someone else, merely just a nightmare that we've finally woken from. Most of the time I blissfully ignore those painful memories in favor of living in the current moment and focusing on our present situation ripe with the challenges typical to any young couple. Most of the time I am successful, and only have Kavan's sparse locks to remind me of his not-so-distant ordeal, however, at other times those memories grip me and manage to drag me into a scary cycle of anxiety and panic.

My blog today is not so much about Kavan. It is more about the challenges I have faced, and as I write this I am under NO delusions that I am by any means unique. I know that a great majority of this blog's readers are those who perhaps don't know Kavan personally and are struggling in other parts of the world with a similar diagnosis. I know that they too have family members/spouses that are struggling with similar emotions as I. It was only after Kavan finished treatment that I could begin to care for myself and explore how my physical/emotional well-being was impacted by his catastrophic diagnosis. It is with this experience that I feel compelled to write this blog post and aim to accomplish one of my new year's resolutions.

Thus far, I have connected many of our experiences over the past year with my own professional experiences as a nurse working in various pediatric settings. So often in healthcare, we seem to focus the majority of efforts/attention on the patient, that individual most apparently ill. We compartmentalize the patient, friends, spouse, and children as if they are all separate entities, rather than a single unit grieving the loss of health and all the complexities that loss brings. While I do realize that the majority of time we in healthcare are well-intentioned and merely making the best use of our extremely limited resources, we may, unintentionally, be serving to discount the importance of the healthy "family" unit and the direct effect it can have on the patient.

Now, I have no intention of discounting the experience of the patient, in this case one battling Ewing's Sarcoma, but I would like to use my own experiences to highlight the importance of a healthy spouse/caregiver. Prior to Kavan's diagnosis I would admit I led a carefree life. I had the idyllic childhood with two loving parents, lived in a nice house in a safe neighborhood and enjoyed all of the benefit of a middle-upper class upbringing. I attended University, had a full time job after graduation as an RN, and was able to take regular vacations. I had never really struggled and the great majority of the time was a happy person free from worry. I do admit that I have always been a bit of a perfectionist and type A control freak...I am a planner to the T, and enjoy when things go according to plan. Apparently, according to my Uncle Bill, I have not changed much, as I was the same way at age five.

Fast forward to 2012. Kavan had just returned from four months in Asia. I was busy working in preparation to begin full-time graduate education. BAM-Kavan diagnosed with Ewing's Sarcoma, an aggressive, rare form of cancer requiring intensive chemotherapy, radiation and surgery. Didn't exactly fit into my plans. Couldn't change anything. Even the best planning couldn't fix it.

Though it was difficult, and the year was filled me with many tearful hours on the phone to family and friends, WE survived. I managed to continue and be successful in my full-time graduate studies and even work a couple of days a week. I had a few crazy moments where I lost my mind, but all in all WE did well. I can't recount how many times I heard, "I don't know how you did it", 'I couldn't have handled it". Thinking back, I don't know how I did it. How did I hold it together? Like most family members supporting someone going through cancer treatment, I focused all of my energy on Kavan's well-being. I aimed to make his experience of intensive cancer treatment as enjoyable as possible. I now acknowledge that while I did a "bang-up" job of ensuring he was coping, I took lousy care of myself and my own emotional well-being.

About two months after his treatment was completed, I started to crack. The type-A control freak in me reared its ugly head and I began to experience intense anxiety. After struggling and enduring multiple sleepless nights and panic attacks for a couple months, I admitted defeat and finally visited my Doctor. These events were completely foreign to me. I had never experienced the racing pulse, difficulty breathing, uncontrollable thoughts, typically associated with panic attacks. My Doctor likened these events to a sort of post traumatic stress disorder with the triggering event being Kavan's cancer diagnosis. Why did I not have these events during his treatment? The best answer I can come up with is that I felt safer when Kavan was receiving treatment. Something was being done to keep the cancer at bay. The constant monitoring gave a sense of comfort. Now that treatment was over, the great waiting game was to begin...

Thankfully, I have a supportive physician and psychologist who provided me with tangible strategies to manage my symptoms. For the first time in my life I attended counselling and underwent cognitive behavioural therapy-a sort of brain-thought retraining program. I must admit it was, at times, difficult to hear my own insecurities and fears out loud and asking for help felt like an admission of failure. However, my attitudes towards anxiety and mental health are now greatly changed and I feel fortunate that the CBT provided me with means of reducing/controlling my panic attacks. While I consider this development a great success, in the intervening months other emotions have arisen: anger, jealousy.

If I've learned anything from this entire experience it would be that life isn't fair. I always knew this (primarily on a superficial level), but now, I really do understand that life is not fair. This is often a source of my anger. I feel anger that this happened to the best human I know, someone so full of a love for life. I feel anger that I've lost my blissful ignorance and peace-of-mind. To the majority of 27 year-old males chest pain doesn't mean a thing, however, to Kavan chest pain could mean mets. I feel anger that we have lost some of the ability to choose certain things in our lives. Our path will never quite be the same as our peers. I feel anger that many people do not stop to understand that though treatment is over, the worry is NEVER over. Sometimes, this anger morphs into jealousy. Yes, there are some days that I feel jealous of those around me and I think, "Do they even know how fortunate they are?". Why can't we enjoy the same things?

When I find myself veering into this territory of negative emotions/thinking, I try to weed out the root cause. Usually it comes back to that feeling of loss. What was life like when I didn't think of cancer? I can barely remember. Then, I try to think about all of the positives: I am engaged to a survivor, we have experienced true love, and I am strong enough to endure crisis for an entire year. Kavan is alive and healthy and we have an entire future ahead of us. (My new mantra). We have something that those others don't have, the strength and resolve to keep going, soldiering on. We have lived the same struggles as a couple together for forty years. We have already lived both the "sickness" and "in health" detailed by so many marriage vows.

So, what is my message through all of the above ramblings? I suppose it would be to support the entire family unit of an individual undergoing cancer treatment. The health of the caregivers of the patient are important....If you know someone who has a spouse/child/family member battling cancer make sure to ask how they are coping. This act of kindness/consideration will extend beyond the spouse (etc.) to the cancer patient themselves. In the same breath, if you are reading this as a spouse/family member/child and have a loved one undergoing treatment, please DO NOT hesitate to seek counselling or support from friends/family. As my family reminded me last year, the patient (aka Kavan) does not need to see you fall apart, it will not help in their battle.

I am hopeful that my experiences will be helpful to another in a similar situation. It is my resolution to continue recognizing negative emotions and dealing with these events in a timely manner. This is necessary in order to avoid a recurrence of the panic attacks.

On an entirely different note, Kavan is doing well. Happy as always. He is due for his 6 month check up at the cross cancer this week...more news to come.

Kavan as an infant...even had that infectious smile back then!