I say mostly because now when I first notice the air get cooler, and the leaves start to fall, I am met with a feeling of uneasiness. I get worried. Distant. Needy. Insecure. Fearful. For it is the fall that has also been the background to some of the worst times in my life. Evie was diagnosed with cancer in the fall. Just last year she spent two weeks in SickKids, drifting further and further away from us. It's not that I assume something bad is going to happen in the fall, but the things that have....well, they've been pretty awful, and it's not easy to forget them.
For the past couple of weeks I have been re-living the events of last year in my head. I can pretty much remember where I was and what was happening every day. I think about it, what I did, how she was behaving, what her medical team told me. I think about it all. About how worried I was becoming, and how I felt like nobody was getting it. I felt helpless. I knew something was wrong, but I didn't know what. And I really didn't know how wrong. How did it all change so quickly....again? How is it possible that I was being told she was fine, and I was likely just getting "carried away" one minute, and the next I'm being told she needs surgery and we're lucky we didn't wait any longer to bring her in....that it was "close". Even those words didn't seem real until long after the initial emergency. I'm not even sure if our closest friends and family know how close "close" was. I'm not sure we communicated that....we were able to communicate that.
The funny thing is, as awful as it was but a year ago, everything has changed again, again. Today, almost three years to the day later, Evie had her last scheduled chemo treatment. For the first time, she finished her protocol, and with her last scan looking stable....her team decided that this will be the last treatment.
Now...I feel like there is more to explain...things like:
- as with any cancer patient, at any time, she could require more chemo.
- she will continue to get scans, and follow ups, and will still need to take the same medications
- her cancer isn't gone, she isn't in remission, it's just stable.
...but all in all....this is good news.
It's actually really good news. Most parents are counting down the weeks, counting down the treatments, and I'm not different. I have been counting down weeks forever, but as time passed, it just got harder. The first seventy week protocol ended at week fifteen. Re-start the countdown at sixty weeks. A few months later, we started again. And again. Even this last protocol, definitely the most toxic, and invasive, though I knew the timeline, I had been lead to believe it was not the end. I fully expected to start another one. We, Paul and I along with her SickKids team, had those conversations. It was approved by her team, and us. We were on board for more chemo....seems crazy, but we were. So I was shocked to hear them say it was the end.
I was so shocked in fact, that I found it really difficult to actually enjoy. I told people...cautiously. I warned that it could all change again in an instant. I didn't send an Evie Update email. I figured why bother, her scan is coming up...better wait to get those results before I get too excited. I actually thought her medical team was just trying to give us a few weeks of feeling happy and treatment free. On the one hand, so what if they were? We should enjoy any moment that is not full of cancer, chemo, doctors, tests, needles. I don't want to live, just waiting for more bad news, cause if I do, surely it will come in one form or another. But on the other hand - I hate to be the one to tell everyone it's ok, just to take it back. So I'm waiting. I'm waiting until a bit of time passes, and we have her next scan. I'm waiting until I feel a bit more comfortable sharing this happy news. And even that I feel guilty about.
I'm not sure how I can exactly truthfully be able to
say that every year for the past 3 has been the hardest year of my
life, but there you have it. Is that just being a parent? I'm not sure. I know that I am much more thankful, grateful, and appreciative of those around me. I can see kindnes, and forgiveness in places I couldn't before. More than anything I can see vulnerability. I see it in the eyes of my friends, and my family. It's not pity, it's that they hurt too. But amidst the hardships, I see beauty. I see the way Evie looks at things, at the world. I see the wonder, and the amusement. I see how she sees people, how she loves things. She sees the colorus of fall, and it reminds me of how much I love it...I guess you do need to have love to understand loss, and you need to be sad to understand happiness.
