This rainbow image has been getting a lot of mileage with me. A friend took the image over Fells Point in Baltimore on New Year’s day and it fills me with hope, particularly with Diego’s own symbolism of storms and rainbows during his treatment.I try not to think about things, and by things I mean Diego’s disease. I don’t feel that I can pretend it never happened, or act that it can never happen again, honestly I really don’t know. When we had the scare with the relapse in March/April of last year, I realized that my confidence that he was “done” was wishful thinking. Statistics made me believe that everything would be okay. Then the new masses were discovered, and I discovered that statistically it looked like a Wilms tumor relapse. Then when the new tumors were found “dead” or “differentiated”, I found out that that was statistically very rare. At the end of it all, it’s a statistical dead-heat. Time will give us some comfort, as relapse is most likely to happen in the first 2 years after treatment.
Anyway, it’s hard not to start a new year and look ahead. I remember at then end of 2011, after Diego spent 3 weeks in the hospital for another bowel obstruction and 4th surgery he had only just finished his final chemotherapy. We hardly felt off the hook at that point. We were exhausted, and while those around us told us to expect a great 2011 because things have a way of evening out, I think I knew better.Still, at Diego’s first off treatment scan in March I brought the camera with us and he posed smiling and goofing off in front of the machine. We had no idea that our worlds were going to be turned around yet again. Since then, no more cameras at the scans, and no more illusions of being in control. It’s a crazy balance that one gets used to, I think. One has to sort of co-exist with the disease post treatment. The war is over, but it’s a matter of keeping the peace day-by-day.
Erich and I watched a travel show on Beirut a while ago, and I think we both had an odd understanding of their culture. The film crew got there to film a typical show in 2006 only a day before the bombing of the airport and subsequent war. They ended up filming a documentary of their experience, right up until they were rescued by the US Navy. On the first day of filming in the streets, the film happened upon rebels celebrating the death of three Israeli soldiers, and it was clear the Beiruti host knew what was going down. That night, the film crew went out on the town, as planned, with Israeli jets whirring threateningly above the rooftop cafes. But the Beirutis weren’t ready to let the party stop. Under a constant threat of attacks over decades, the Beiruiti culture decided, has always decided, to keep the party going, because, as it was either implied or said, “It could end tomorrow.” I turned to Erich and I said, “This is how we live our lives.”
And really, with cancer or without, we really never know what’s going to happen. It’s hard to know when I will feel “safe” about the cancer. I’m not sure if I will ever let myself feel safe about it again. The last time I did they found more tumors. So, I try to just not think about it, and say my little prayers and send out my little positive vibes.
Sadly, Diego’s friend we met in the hospital last year was diagnosed with a cancer relapse last month, only a few months off extremely aggressive treatment. (Diego’s was a cakewalk, by comparison.)
Shit happens. Unfair shit. Every. Single. Day. It will never stop happening, so this is exactly why we need to celebrate the every day. People make it through cancer, kids make it through relapses. Sometimes they don’t. We really don’t know what is going to happen. The only control we have is our outlook. We can choose to find the joy, to celebrate, to fight back the fear and worry. This is the way we take control of our lives and make it our own.
People often ask me how I don’t worry, or ask me to ‘teach’ them. Which is funny because I used to be a total worrier, and spent way too much of my time living in fear and concern. And I’m not saying I never worry, but when I feel it’s taking over, my fix is one part control and one part bravery. Putting one foot firmly in front of the other and not letting the fear take over. So here’s what I recommend: