Totality. It really is a misnomer. Some things are so powerful that even when they totally cover an object, the object can not be obscured. It can be changed and altered, but it can not be obliterated.
Totality is something that can not be explained unless you experience it. Childbirth, seeing the
Grand Canyon, being with someone when they die, seeing a bird hatch from an egg, watching whales spout in the ocean, hearing a symphony play a favorite piece of music, walking through a museum and happening upon a favorite painting.
Words are insufficient.
But once you do have the experience, you are forever changed.
We went to see the Total Eclipse. The Total Experience is life changing. During the hour and a half dozens of things become apparent.
1. It takes a while to develop but seems to recede more quickly.
2. While the light remains eerie, it is still there. It doesn't take much to light up the world. Even a tiny bit is impressive.
3. The sun actually heats the earth efficiently. Even when it is half-way gone, it becomes much cooler, quickly.
4. During Totality, it is possible to see the edges of the shadow of the moon. You feel like you are under a bowl of darkness with dusk around you.
5. Even at the darkest moments many of your friends provide much-needed support and light.
6. Seeing the stars midday reminds you of what is in plain sight, if only you are in the right place to see them.
7. The Corona is much more than a flash of light. It is magical, powerful and the memory won't ever leave you.
Sort of like having a Cancer Kid. Parents can't ever explain what it is like. It never goes away. You live in uncertain darkness, not knowing if it will return. The world looks the same, but there is a chill in the air.
You are trapped under a bowl with no way to reach the edges and enter the light. Even when Cancer "left" for good. Despite how close you are to reaching the edge, they keep moving it. The worry and long-term side-effects haunt your dreams and your waking moments. There is no way to ever believe the monster will not return. It is hiding ready to spring back if only we knew where to look and how to look for it.
Both are an experience that changes your life forever.
This is my Cancer Kid taking photos of Totality. She had already been changed forever. This was just one more thing and a great thing.
The longer one hangs out in Cancer World, the more apparent it becomes that it is not a wondrous, happy, healthy, healing place. It just isn't. No one exits without deep permanent scarring. The shocking kind that can be hidden, yet still exists under the long sleeves.
I often wonder if anyone is really interested in watching the Cancer World train wreck day after day, week after week, year after year. Does my writing help anyone? Do I do it because 12 years of living here have taken away my ability to write about anything else? Does my constant haranguing make people desensitized to the entire journey? Cancer World is simply a grind. An endless plodding grind.
One with an ambiguous ending.
People want happy endings, evidence of great triumph over adversity and life-affirming stories. The grim reality of Cancer World is there are no happy endings. Many many children die long horrible deaths. Some receive reprieves and believe they are done. Families celebrate "End-of-Treatment," "Cancerversarys" "One Year Off Treatment," "Last Dose of Chemo." No Hallmark card fits any of these situations. Very few children ever hear the words "Cure." They are told they continue to be "NED."
No
Evidence of
Disease
Many are told they are in "Remission" This is not a word that warms the cockles of our hearts. Simply a reprieve. Some are short, some are endless. We all live with the fact next word we will hear is "Relapse or Recurrence." We know cancer comes back with a vengeance. There is no way out. We are here for perpetuity.
Mary-Elizabeth is currently doing great. She seems to have settled into her little universe of side-effects. She handles the GVHD. She sees the endocrinologist. She manages her hot flashes. She weeps on occasion for the loss of the chance to have a child that carries her particular group of DNA. She is hyper aware of any changes in her body. A bump, a sneeze, a strange feeling of concern. She addresses each of them. I only try to put my worry in the way back of the fridge and hope it is not growing something disgusting.
Others have not been so lucky. We have met so many people over the years and know many many families that have come to the end of the road. They simply take their children home to die.
These deaths are painful and agonizing in so many ways. There is no way to describe the veiled anguish of every Mother's post. They put their best face forward and try to have something happy to say.
They acknowledge they are counting on God to perform a miracle and have their child with them again. Yet they know, they know all too well, the time of the last smile, the last breath, the last gentle kiss is coming. The sand is rapidly escaping the hourglass, and there is no way to stop gravity. The entire process is just overwhelming and excruciating.
Time does not heal the wound of losing a child. The pain does not lessen or diminish in few months or few years. This is a gaping, car-swallowing sinkhole kind of wound that never ever heals. The pain of losing a child remains forever. Life does not get easier, nor does the pain lessen.
The reason we fight so hard to beat such a demon is that somewhere in our mother souls we know. We know the depth of the love, the deep well that burrows into the center of the earth and out the other side to connect with the Universe. We know how much we love our children and losing them is not an option.
I ended the blog because I couldn't keep from talking about all the sadness that had been the last few months. There had been so many losses of such lovely children. Too many funerals, too many "Joyous Life Celebrations" too many deep sighs choking back tears moments.
I don't keep count anymore. I cringe every time someone celebrates the last dose of Chemo or the end of treatment. I just hold my breath for them. I know too much.
We were at the end-of-treatment to only have the monster return seven years post-remission and 57 months after the last dose of chemo. What the Hell!? She is now 5 years post-transplant, and no one is talking cure. No one has said we don't have to worry anymore. No one is saying much. I think we are all just waiting.
I certainly am.
Reminded me it was important to take a few moments, when the sun arrives.
I am sure 93% of Seattle is out soaking up some much needed vitamin D. I let myself spend a bit of time in the sun.
