It’s been over two months since I shared my last update with you. That post was written a month after surgery and a week or so before I began my “mop-up” chemotherapy treatment. Since then, I’ve had moments where I had some idea about what I might share with you beyond a simple update, but often the decision to sit down and type got sideswiped by my lack of energy to do so.
Often, I’m not really sure what to say as I’m still trying to metabolize and make sense of this experience. But, today as I begin a week without chemo, I have some energy to write.
Someone said. “It’s the grind that gets ‘em." I believe it.
As I've met and talked with others who have experienced their own ongoing chemotherapy treatments, they have confirmed that the grind takes its toll.
Eight full weeks into my 18 week chemotherapy mop up treatment, I’m now officially tired of it. Weary of the daily feeling of bordering on nausea. Frustrated, not just with the pervading exhaustion I feel, but also with the complete lack of any reserves in my energy tank to fuel attempts to accomplish more than the day-to-day requirements. Add to that, the numb fingertips, the perpetual dryness I feel on my skin and lips, and the inability for my body to heal itself, even with a simple cut. This process is taking its toll on my body, my emotions and my mind.
The first day of the first week of each three-week treatment cycle includes an IV infusion of Oxalyplatin. In me, this particular drug creates the immediate side effect of neuropathy, which includes intense and painful tingling in my arm where the IV needle was placed. Then, over the next week or so, the intense tingling in my arm fades.
But the painful rush of tingling immediately returns when I touch anything cold at the spot on my skin where I touch it. The feeling I get in that moment can best be described as pins and needles, but amplified by 100. You might have experienced a pins and needles feeling in an arm or leg when you place a lot of pressure on it. When the pressure is released, the blood flow starts again and you experience a feeling of prickling, tingling or similar, often referred to as pins and needles.
Even though I know this reaction to cold will come, I am a slow learner. After grabbing a couple of eggs out of the fridge with my bare hands, the intense pins and needles feeling immediately invades every single skin surface where I held the eggs. But with eggs, you can’t just drop them. And the longer I hold something cold, the longer it takes to subside. Then the feeling returns again when I hold my hands under cold tap water to wash them.
A few days after my previous IV treatment, I emailed Dr. X, my oncologist, and complained of the pain, the nausea, the neuropathy, the issues with concentration and more. I was at the end of my rope. She responded and encouraged me to wait it out for another day or so.
And while the intensity of it did fade over the next few days, the effects remain as chemotherapy is cumulative. Even during the third week of each cycle where I get a week off from all chemo drugs, the nausea, weariness and neuropathy linger.
Despite all my positive intention, the belief I have in the value of this treatment, and my knowledge that this process has profound learning and insight attached to it in my life, I find myself wanting it all to go away.
I'm learning that I can’t horribilize this experience and intensify it in my mind by imagining how bad it might be next week or over the next 10 weeks as I finish my treatment. Even though I've been tempted on many occasions to give up this treatment because of how hard it will become in the weeks ahead, I have decided I can’t allow myself to go there.
Instead, I need to focus my attention on this moment, this hour, this day.
- When the nausea is most intense, my goal is pretty simple. Just get through the next hour.
- When the fatigue is overwhelming, I set my sights on the immediate rest I need to take or the goal of sleep tonight.
- When my concentration is shot, I sit back in my chair and allow myself to just "be" for awhile.
- When the wave of complex emotions hit me, I give space for the tears. I make room for the discouragement.
- When I forget the reaction I have to cold and mistakenly drink the glass of ice water, I sit and wait while the pain comes and then goes from my tongue and mouth.
Life, and living for me is all very immediate right now. It is lived in the moment.
I am incredibly thankful to all of the people who have walked this difficult journey and who've taken the time to share their story and struggles with me. There is no sugar coating or feel good platitudes from them. They give me their raw, honest, uncensored reality, and that has helped me to know I'm not alone in this process. They’ve reminded me to keep moving through this process–one day at a time–despite how hard it gets.
And through all this, I am grateful for your overwhelming support, love, encouragement and prayers on my behalf. It’s an energizing force that gets me through the struggle. Thank you.