Last time, I talked about being all prepped for my upcoming chemotherapy session. This time I am halfway through the first of four, three week, cycles. All the pieces are in place. My husband has uprooted his life and work to be a support while I am here for the first two chemo sessions and the three weeks in between. Our son and his wife have graciously opened their home to us for a base of operations and my safe haven. Family members and friends stand waiting and ready to offer what assistance is needed. A dedicated medical team is on point. As prepared as I wanted to be, with my chemo bag all packed and all my supplies organized and tucked into their various pockets, this first round had a clunky beginning. Trying to balance getting to GP, getting my pharmaceuticals which were at a drugstore there, other health appointments, and winter weather. I was not able to take the first pre doses of chemo support drugs, which you are supposed to take the day before the chemo session. So a late start on that. However, we got it sorted and I went like a lamb to the slaughter. Trepidatious but (most likely naively) calm. While I am reconciled to whatever my life’s big picture may have in store, I have thought a lot, prayed a lot and felt a lot about this course of action and feel comfortable in doing everything I can to save and extend my life. This will include the medical foray into methods and means I don’t understand a lot about, but are recommended. Then on top of all of this, making lifestyle changes that will include natural ways and means to be healthier and continue the fight against the cancer cells that have been released into my body systems.
Things went relatively well with the chemo session. All of the precautions, protections, checks and balances were carefully considered and applied. One of the drugs they use, they start out with a slow flow to monitor what it does to you. I decided my code words were going to be “I’m melting!” and if they heard me say “ Oh what a world, what a world” they would know they weren’t coming fast enough to change the drip speed (One of the nurses got the Wizard of Oz reference and was amused). I have determined that humor and grace will permeate this experience. That resolve has been tried and tested this week. Anti nausea meds and steroids and their accompanying side effects to help my body handle the chemical onslaught. Then, neutropenia meds and the associated pain control involved in managing the side effects of stimulating white blood cell growth to combat the deficits created by chemotherapy. Ongoing medications and protocols to combat the collateral damage created by this invasive, abusive, assaultive, aggressive strategy to kill off any remaining cancer cells. Constipation for four days had to be managed with a medication then flipped to diarrhea which had to be managed with a different medication and other protocols.
Pain week, the few days after my husband kindly injected me with pegfilgrastim, the neutropenia drug that stimulates white blood cell production within your bone marrow, was navigated and the right balance struck for pain management. But not after experiencing a period of the most horrific and mind blowing pain I have ever had in my life. I felt as if my bones were being roasted, straining and cracking under the expansion. I know there are those who struggle with this level of pain on the daily. I can’t even fathom how. My heart breaks over it. For me, I am glad it was just for a relatively short time and I have the ability and tools for managing it better next round. I imagine that this is what it feels like to die from cancer, the pain that is experienced in waves from one or every part of your body until you are granted a morphine induced oblivion. It is ironic that it is, even if briefly, experienced as part of the cure, as well. Almost like a reminder of why you are suffering through the current regimen.
Now, my immune system is broken between day 7 and 14, so I must remain isolated and vigilant for the next few days, and do this three more times. Because, after all of this, I don’t want to die from something stupid. Even as many in the world are currently demonstrating for their rights to ignore all the health protocols that can keep someone like me from contracting a pandemic virus, or any other disease. There are risks associated with the treatment. But unfortunately, like paying your insurance for just in case, I feel that I cannot pass on this in the hopes that nothing bad will happen if I don’t do it, or that the other approaches will be enough to guarantee my survival. It is a tough choice. And to be truthful, there have been moments I have questioned this course. But I always get brought back to my peaceful feeling about doing all that I have available to me. No matter how inconvenient, uncomfortable, humbling, frustrating, scary, or crazy it seems. And believe me, sometimes it seems pretty crazy.
We are so advanced in this day and age but yet it still feels so barbaric, what is happening. Parts of our bodies are removed (this is a whole blog post in it’s own, don’t worry folks). Then we are blasted with chemicals and radiation we know are harming our healthy cells as well as the cancer. But the hope is that, while there will be damage to them, the healthy cells will handle the barrage, and rally and heal afterward while the cancerous cells die off and are eliminated. Except, of course, that the damage that is happening can actually lead to other challenges including different types of cancer, in the future, or not be effective enough and this cancer will crop up again and need to be treated. But for today, for this battle on this hill, there needs to be a strategic assault to gain enough ground to hold the line. And then we can work on taking back the usurped territory. There will be fallout. There will be irreversible changes. Collateral damage. My relationships with my body and systems will be forever altered.
There is still so much that is unknown about this type of biological and cellular warfare. I am trying to strike a balance between trusting an uncertain science that has definitely got experience with a certain way of doing things but hasn't got enough experience or trust in other ways, and trusting other sources and my own instincts to do some things that make sense to me, while trying not to interfere with these processes that are taking such a toll that I don’t want to waste their impact. Collaboration is difficult for both sides when we don’t know enough about what the other knows and has experience with, and when we are not certain we hold the same vision. On my part, I see a medical system that, while it is enacted by compassionate humans, is based on knowns and percentages, what is easiest, most efficient, the straightest line to a result, no matter what the cost, willing to experiment with unknown (to me) substances and highly focused on chemicals but not a lot of effort toward a holistic viewpoint. On their part, they see a scientifically untrained human, wanting to have a body and a life after this, and willing to experiment with unknown (to them) substances with possible interactions that have not been researched enough, toward a more holistic viewpoint. It is hard to find the space, time, language, or faith in each other and the process to have collaborative discussion.
How do you wade into this kind of conversation when you are on the frontlines of a war zone? When time is of the essence? When so much is at stake and the wrong strategy could lead to disaster? When what is being proposed by either side looks like it leads you away from the thing that everyone wants? When it is not even clear to each side what it is that everyone wants? Today it feels like cancer has overtaken my life, it is my full time job and mostly all I talk about, think about, pray about, feel about. All the other parts of my life have become the side hustle that I desperately am trying to be intentional about, find time to keep going, not lose sight of, and make it pay enough to pay for itself! Oh how the pendulum has swung. Somewhere in the middle is the balance I need to come away from this with. Because from all I read and hear, cancer and it’s considerations have to become part of my everyday life from here on in. I can only achieve that balance I am looking for by incorporating it into the rest of my story. I have been here before.
There was a time when my mental illness was EVERYTHING. In the middle of my suffering, learning, reaching for equilibrium, striving to overcome it, my illness was my orbit. The thing around which I gauged every action, decision, conversation, thought. It took up all aspects of my consciousness and I had to rearrange every aspect of my life around it to move forward. I get sick of hearing myself, in almost every conversation, bringing it back to this thing that is so big in my life right now. And back then I remember watching and listening from some detached place in my mind as my mental health became the center of my universe and everyone else’s. If for different reasons. Mine because of the brave new world I had entered and my hope toward healing and wellness. Others’ because of their fear that I would lose it and slip back down into the vortex again. And all of us were waiting for the other shoe to drop. I wrote a song out of my message to those loved ones, and my old self, peering, barely able, but trying, to trust any changes. “What do you see when you look at me? What I used to be? But that really wasn’t me, and how can I help you to see it. This is me… I see the hope behind your haunted eyes… A new life awaits us, let me go! Let me try this!”
But it takes a lot to move through the stages of change that lead, sustainably, to that new life that awaits. It took every ounce of every effort. It drew from the deepest parts of me, insights, abilities and strengths I never knew existed, or at least had never had to consider. I met myself rising up, partway down, as I descended. And myself did not want to lose me. There was, in that meeting, recognition, realization, negotiation, collaboration. And reinvention, resurrection, reclamation, in the ensuing process. All the parts of my life, my psyche, my personality, world views, habits and practice, my environment, my social systems, were, and continue to be, repeatedly examined with each new lens of awareness. Decisions are made about priorities, bargaining happens, victories and defeats, failures and successes and I emerge with some sort of a new balance to be getting on with until I gain enough ground to solidify something, and then another thing, and rise, and rinse and repeat. Becoming well became a full time job and life, as I knew it then, became the side hustle. I had to put each in its proper perspective and give it the focus it required in order to reclaim my life with the pursuit of mental wellness and it’s accompanying spectre of illness as my permanent bedfellows.
And, yes, as in our individual lives and challenges, so it is in community saving and rebuilding. We meet ourselves rising, partway down in our descent, and do not want to lose ourselves to the cancers and dysfunctions that are sapping the joy out of our lives. Because the truth is that no matter who we are and how good our lives are, if others are suffering it impacts on our little bubbles and systems and threatens the sustainability of our well-being. It has been so since the dawn of time. History repeatedly has demonstrated this. So we recognize and realize. We negotiate and collaborate. It is hard to find the space, time, language, or faith in each other and the process to have collaborative discussion. How do you wade into this kind of conversation when you are on the front lines of what feels like, and is, a war zone? When time is of the essence? When so much is at stake and the wrong strategy could lead to disaster? When what is being proposed by each stakeholder looks like it leads you away from the thing that everyone wants? When it is not even clear to each viewpoint what it is that everyone wants?
Collaboration is not easy when all sides are not able to see or trust the intentions and efforts of the others. When there is not a shared vision, or a set of widely accepted definitions for what everyone is seeing, wanting, feeling, needing. Without a collective understanding of how we interconnect and intertwine. Every effort has an effect. And sometimes efforts collide and negate, or interfere with others. Blasting apart systems, removing threatening or diseased parts, and adjusting long held mindsets is scary. Often, when we move into the world of community transformation, there are contraindications and collateral damage that can become discouraging and disruptive in themselves. Different camps, considering the situation from their own perspectives, can run the gamut of attitudes and approaches that range from the crude and even cruelly efficient to the organic and painstaking. Everyone feels their way is best and yet no one has a guarantee of success for something that may have been reasonably proven but has never been tried in that particular set of circumstances and conditions.
If we are smart enough, bold enough, we find ways to compassionately consider each other. We create the will to trust. We move forward together in the ways we can and reinvent, resurrect, rediscover and reclaim our true natures in the process. It is, as it has to be, a holistic effort that encompasses internal and external systems, our environment, our worldviews, our psyches, personalities, habits, practices. All have to be examined with each new lens of awareness. Decisions have to be made, individually and collectively about priorities. Bargaining happens. Victories and defeats. Failures and successes. We emerge with some sort of a new balance, enough to be getting on with, until we gain enough ground to solidify something, and then another thing. And rise. And rinse. And repeat. Again and again, for each battle on each hill, we keep the dream alive and hold on to and refine the collecting and unfolding vision.
If we want the realizations to translate into changes that solve for deficits, and become sustainable over time, community necessarily becomes a full time job, with life as we knew it relegated to a side hustle. It has to be this way, if we are to move out of the realm of what is and into the world of what could be. We have to put each into its proper perspective in order to truly reclaim our lives. All of our lives. If we do, we can get to the point where we move forward confidently and collectively. With the motivating hope of a truly whole and functional community and the accompanying, mindfulness inducing, spectre of dysfunction and despair as our permanent bedfellows. I know… I have been here before.
Please enjoy a musical gift:
Hold on, written about another time of life when two opposing viewpoints collided and equilibrium had to be found for joy to emerge
and Paradise Now, written out of a dream and vision for a better way forward as humans
These and other songs can be found on all music platforms. The more you download and stream, and then share the links, the closer my community benefit organizations move toward monetizing and raising dollars toward doing more good in the world.
Buying them directly from our website as well as doing all of the above, will make that happen faster: