On Saturday I allowed myself to have the thought – This isn’t really so bad, I think my body is handling all of this well…
What a difference a day makes! Sunday I received my first hit of side effects. I attempt to keep a open, curious attitude to what are happening within my bodymind. The symptoms were like nothing I’ve ever experienced before, when comparing it to past illnesses or conditions. I found it difficult to swallow, I noticed little tingles of nerve signals bouncing around my body, and strange waves of odd mentation or emotion peculating through my awareness.
I am fully aware that what I am perceiving is a 1 out of 10 on the overall side effect scale. I participate in several forums with PMBCL cancer patients undergoing the same treatment as I am and some of their tales of suffering will tear your heart out. Friends have told me its best not to ‘tell yourself stories’ or to anticipate side effects and other negative aspects of treatment, however I actually know for myself that understanding the possibility of a side effect prepares to meet and embrace it. The most anxious memories of my life have been when something is happening to the body that I cannot link to any clear cause. Ironic, that this is basically the big pickle I am in now (having a cancer of unknown origin), but let’s take it one piece at a time!
Backing up a bit, I started my treatment on Monday and then the week went through a familiar routine of insomnia, morning mania (the prednisone high which involved house cleaning and sending tons of messages!), preparing for the daily trip to the healing center around 2pm and then coming home with my father to enjoy some dinner and premiere league soccer in the lazy boy. This was all happening while connected to a bag of chemo and a pump that would deliver a few milliliters of concentrate directly into my right subclavian vein. Buzz, buzz, buzz, the pump would quietly remind me of my healing process every 15 seconds or so. I liken the process to having a small dog on a leash connected to you for 96 hours straight, with about 5 or 6 feet of give. Need to go to the bathroom? Take the dog. Want something to drink? Take the dog. Take a shower? Don’t even bother! ha.
Three or four times during the week I lost all awareness of the bag and jumped up to do something only to be kindly reminded by the pull of the needle poking into my chest port. Luckily I didn’t pull hard enough to tear it out! Usually when moving around I would wear it as a backpack or fanny pack, only unhooking it when sitting or lying down for long periods.
The week itself was a bit of a blur – daily trips to the infusion chair, late night insomnia and Netflix, my father working on projects in my apartment. One day after a small snow storm, my Dad and I took a walk on a brilliant sunny, snow stretched day. My Dad was so helpful and kind to me all week – anticipating my needs, driving me around and even finding time to tackle some plumbing projects at my house!
I have many fond memories of the helpful nurses at the healing center – answering my questions, fetching me warm blankets, explaining in so much detail what they were doing when changing infusion bags or medicines. I am so very grateful for the care that I have received over there. Just now, as I type this one of my favorite nurses called just to check in on me, to see how I fared over the weekend.
Another auspicious aspect to this week was the maha shivaratri festival, which is a yearly event celebrated primarily in Indian culture dedicated to worship of Lord Shiva – one of the goals of a practitioner is to remain awake all night, chanting, meditating and praying throughout the night. Luckily I had an advantage with my prednisone! And those early morning, candlelit hours in my meditation room were very sweet and intimate.
Friday afternoon I met with the main nurse to go over my blood counts and to get my final infusion for the weekend. My blood counts are good so far, meaning that I am responding well to the chemotherapy and am not yet at a high risk of infection. I went into the infusion room around 3:30pm and almost every chair was taken and the room was full of commotion. Slowly, slowly, the room cleared out, the sun was setting over the mountains and I was the last one remaining in the room with the two remaining nurses. The final few drops of my chemo entered my IV as I listened to this beautiful track (click to listen):
Tears streamed down my face as the remaining light faded, my first five days complete, my inner warrior relaxed. Free and vulnerable and grateful. Eternally grateful.
Om Namah Shivaya