Tonight's picture was taken in August of 2009. I typically did not post the photographic reality of childhood cancer on the blog during Mattie's journey. I did not because I knew friends of all ages were reading the blog and personally I think photos are sometimes way too graphic. Nonetheless, this was the reality of what Peter and I saw on a daily basis. A child who was once full of life, energetic, and vibrant, get transformed before our eyes into one who was deeply depressed, anxious, and truly disengaged from people and the world around him.
Quote of the day: While there’s life, there’s hope. ~ Cicero
I met a friend of mine today who is managing her own cancer diagnosis. We spent several hours together and I have to admit it is hard not to look at her situation through my own cancer lens. As I understand her concerns, fears, and feelings in a very profound well.
There are so many aspects of a cancer diagnosis that challenge a relationship and a whole family. Starting with the uncertain nature of the disease's treatment. What do I mean? Assuming one gets diagnosed in a timely way, then a patient is given a treatment plan. The plan typically follows a protocol, which is like a road map. You will know the sequence of medications, testing, and surgery, by the week/month. However, it's so important to remember that a treatment plan isn't written in stone. Just like when driving, we occasionally run into traffic and detours and have to re-route, well a cancer treatment plan is the same way. We can run into multiple detours, namely.... low blood counts, contracting illnesses from lack of immunity, and scan results which may indicate that the current medication isn't working.
There is nothing consistent and predictable to cancer or its treatment, which is what makes it so unsettling to practically all patients and families. Because things are forever changing and the treatment schedule gets altered constantly, it is hard to plan anything outside of treatment. Which in a way can leave you feeling held hostage to cancer.
I love all those motivational cancer quotes. You know the ones. The ones that say cancer can't destroy_________________ (and you fill in the blank). Cute sentiment, but in my opinion very pollyannish. Because without great inner strength and outside emotional support, cancer can easily destroy every aspect of the patient and the family.
Most of us are future oriented. We plan our weeks, months, and years. With cancer you can try to make plans, but the disease ALWAYS wins and plans fall apart and typically get cancelled. I believe that the way one copes with cancer so that it doesn't destroy you, is you evolve with it on a daily basis. You learn to live in the moment and to take each day that is presented with you. You have to do this really because no two days are ever the same. I think trying to plan months ahead of time doesn't work but instead back fires on you as it can make you feel stressed out and guilty that you are not living up to those plans.
For the longest time, I really blamed Mattie's care providers for the fact that Mattie never got to have a wish granted from a national non-profit which funds all sorts of special events, trips, and gifts to children in cancer treatment. I remember Mattie's providers telling me that Mattie would have time to make a wish when he reached remission! So I waited, despite the fact that Mattie had multiple ideas for a wish request. When Mattie died, I was angry. In fact for quite some time I felt that social workers shouldn't take it upon themselves to advise parents about when to make a wish, but instead to leave it up to the family. With time, I wonder about my feelings of anger.
I think anything we would have planned for Mattie would have been cancelled anyway because he was that sick. In fact, I know that if a wish was granted and we couldn't take Mattie on it, I would have reflected on that too. Meaning that whether I made the wish or didn't make the wish for Mattie, I land up in exactly the same place. Feeling regret. Perhaps my ramblings aren't making sense to you tonight. What does make sense though is knowing that cancer's timetable is endless. It is ten years after Mattie was diagnosed and the havoc of the disease continues to swirl around in my mind. Yet I think it is because I constantly confront this havoc that I am able to hear and assist other families coping with cancer.
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