I really like the metaphor of path rather than journey as a descriptive of how we move through our lives with stage IV breast cancer. I am borrowing “path” from Abigail Johnson, blogger and writer at nohalfmeasures.com, attorney, mom, wife. And my friend. We choose the people who walk beside us on the MBC path. The gratitude I feel and the love I have for the people I’ve met along the way overwhelms me at times.
Who owns a crystal ball so clear to predict that my friends now both near and far away one day would step in for former friends and those who choose to not participate inn the end of life of someone they thought they knew well. But in some way the discussion or perhaps the imminent inevitability of my death reminds them too much of their own.
The living still remain on a journey. A life with plans and no talk of death…yet. Why do we fear death when it lives with us every day of our lives since birth? It’s not dinner time conversation, or small talk at a cocktail party.
Intervention, if the percentage of damage is high, e.g. radiation (non targeted) or low, e.g. a biopsy sometimes, a lumpectomy, an oophorectomy, hormone suppression therapies. Most of these exhaust me and steal my bone density. Mainly the therapies are interventional and palliative.
Nothing to see there. With the exception of surgery, while I’m still healthy “except for the cancer,” being offered to me I’ve had every remedy in the doctors bags. On the topic of surgery however, minds are changed in the medical community. I’ve posted a recent study on the blog a few weeks back if your interested in understanding why.
I’m tired of being tired. The fatigue isn’t too bad but then some days I’m flattened. No real reason to point to. I think more likely it’s a build up of all the interventional medications we take and all the therapies catch us by surprise like the wolf in the woods.
A Matter of Death
Since my diagnosis, on more occasions than I’d like, I’m asked if I fear death. I have long ago come to terms with death. My intellectual curiosity walks quietly on my life’s path alongside the living me. Before my diagnosis, mind you.
What happens after our bodies no longer function? Will the energy (spirit, soul, ghost) takes another path we can not know in this physical form? Ive heard accounts of children under the age of seven knowing they had another life prior to this one and there’s some very difficult to ignore evidence of reincarnation if you listen to these children.
The uncanny details of their death and life before the birth to the mother they know now piques my curiosity ever more. I’ve watched several documentaries of Irish and English children tormented by memories of a past life. I wonder about the path one must take to get back into a human body again – does something memorializing transpire to re-enter the world as another human on earth?
And given what I know about the end of this world as we know it, I am curious if we’re even given a choice.
Why is this disease different from all other diseases?
This curiosity began at a very young age, and before I go into that, I’ll tell you I have absolutely no memories of my life before I was seven years old. Everything I know comes form photographs and stories my family recounted to me about how quickly I learned to walk, talk, and write. How my grandparents effected my personality as much as my parents. And as a Jew, we have a specific story we’re told from the time we can remember especially about Passover.
I remember so many seders at my grandmother’s house growing up when my grandfather would let me open the front door to let in the ghost of the prophet Elijah. On the table sat an extra cup of wine from which we would leave for him to drink. Having no idea why Elijah could come in then, I later understood he proffered then coming of the Jewish messiah or the end of times as we knew it.
Scary stuff for a child. By the time I was allowed to open the front door, we’d all sat through a very long dinner especially to a child. During the long drawn out ceremonious meal, we all participate in telling the story that explains the first Jewish diaspora from our enslavement by the Egyptians. The story includes the parting of the Red Sea by Moses and as the last of the Jews were released from Egypt the sea drowned all the pharaoh’s soldiers.
We retell the story of all of the plagues cast upon Egypt including frogs, locusts, blood rain, and years of drought in which not even dew would be seen. No water anywhere, and then the slaughter of all the first born males. Yikes. You’d think the pharaoh would have let God’s “people go.” We ask over and over “why is this night different from all other nights?” We ask four specific questions, why do we eat matzoh, why do we recline instead of sitting up and why do we eat bitter herbs and why do we dip in salt water twice instead of once?
Abundance and reminders of how lucky we are to be alive and bear witness to this life of much joy. And on Passover we would always invite someone who was alone or not doing as well as we were or even on the brink of homelessness, which abounds in the elderly communities. But Jews are a bit different and we take care of our own. I cannot tell you why my family has disappeared. Maybe I’m a little too close to the reminder that death, like Elijah can come to haunt you at any time. I hope they still think of me when they leave that cup of wine out for him.
After the crossing of the bottom of the Red Sea, and of course there’s more to the story here, I’m giving you cliffs notes for the sake of your boredom with this story by now. Let’s return to my point about Elijah. The prophet is taken alive by God to heaven in a whirl of lightening and fire and brimstone. Sounds a lot like hell to me, but that’s the nature of sacred Hebrew texts. Let’s then assume in some way he’s the second coming for the Jews, kind of like a Jewish Jesus but not the son of God. This is where Jews and the religions of the New Testament diverge, if you ever wondered. But this explanation, as all explanations, becomes the basis for discussion of Jewish texts by scholars.
Scholars could discuss these ideas for a lifetime and still not agree with the exact definite story. Kind of like my household. In my family I am the first granddaughter to graduate college and as far as I know the only one to have done so. My older cousin is an RN. Not a bachelors degree but mine among all seven of us.
On the Road Again
But death and dying become the end of the path – and it’s along that path we find new friends – Dorothy in the Wizard of Oz, Alice in her adventures in wonderland. While Dorothy recovers I doubt Alice ever does. We also find ourselves in very frightening situations like both of those characters and need different people to hold our hands, metaphorically speaking, and guide us. And do recall the discussion about Elijah above. It’s all fairly scary.
Yet with terminal cancer there’s plagues, fire, brimstone, lightening, poisons, and blood. Kind of like Passover. When we’re done with all these things it’s nearly like we are being release from bodies that can no longer recover. I’ve heard comments from my sisters with MBC to the effect of when will this all be over and I want to quit and just get it over with already.
We get so tired. The path, difficult and frightening, no matter how long we may live with the disease, ends in our death. We can hope for “a good death,” hope for not having a lot of pain or not having the ability to speak for ourselves when we’re done. I think that’s what I fear the most.
Along the way we encounter stressful situations, like scanxiety, from which we either can or cannot relieve ourselves. While merely a picture of what’s going on inside, pictures of what we can’t see but perhaps can feel. PT, CT and MRI scans of our bodies happen on a fairly regular schedule. However, there’s a fear between the scan and the results, mainly due to the uncertainty of what’s going to show up or “light up” the films.
But those who choose to walk this path with us help guide us when we find ourselves lost in a forest unable to see the trees. Our “cancer friends” can assist us in becoming more mindful, of calming down, and they’ll be there for us no matter the outcome.
A journey is planned. It has a beginning a middle and a return trip home. A path is not planned necessarily, it’s unidirectional, as I imagine it it’s through a forest with pathways going in many directions, with trees and sunshine coming intermittently through, the sounds of birds and wildlife we cannot see but can understand whether they’re harmless or deadly.
We know eventually the path will come to an end but we’re uncertain when. And that sums our MBC lives – lives after the one we once knew with planned trips and work and a dream or two of a future. It’s one we traveled with many different kinds of people – professional, familial, educational, friendly, service giving, and parental. But not anymore.
There’s more to say on the topic and I could go on and on like a Passover Seder. I still see MBC like I was thrown into some alter world. I live in a fairly tale, only there’s no moral to the story and no happy ending except for a miracle cure. And there’s a lot to learn as we avoid the witches and the golems and the bad wolves on our path to the ultimate destiny which all humans face. Only we don’t make it to the end of the story. We’re characters that may be wise, inspiring but short. And the path is a short thing, a tributary off of what was once a journey.
The joinery is over. My path is lined with flowers and friends to hold my hand as we walk together with all the outward bravery we can muster. But we’re just exhausted. We’re not necessarily interested in arguing over semantics. Call us what you will. Call our stories what they are though once we’re gone, and that is we are dead, and the medicine failed us, we didn’t lose a war or a fight. We won for as long as we lived and remember us for that.