Avastin, balance, chemotherapy, Fluorouracil, gratitude, infusion, Irinotecan, legitimate dangers, pettiness, protocol, schedule, Second Round, side-effects, steroids
Since April 2013, Monica and I knew to expect a recurrence of my cancer. It was a matter of time. We were happy to ignore the eventuality and live our lives in a normal unencumbered way. But the reality was in the back of our minds.
Last week’s recommendation from our oncologist did not come as a complete surprise. Yet, it was, nonetheless, disappointing and disturbing. Monica and I both realized that it would mean a resumption of regular and frequent visits to the hospital, the unpleasant but unavoidable side-effects of the chemotherapeutic drugs, and the diminished energy, reduced mental acuity and physical discomfort that undergoing chemo meant for me. Added to these are the resumed basket of contradictory emotions that we both experience: anxiety, empathy, hopefulness, fear, determination, etc.
Our predominant reaction of the doctor’s evaluation was that of gratitude… sincere gratitude that there existed a reliable and proven “second round” of chemo to which we could avail ourselves. How fortunate that we live when protocols have been developed over time, adjusted by the experience of previous patients, and made available to me as a known and well-understood treatment. Instead of feeling helpless in the face of our development we have hope that the treatment will be successful in “beating-back” and stemming the unhindered growth of my cancer tumors.
Undeniably, gratitude was what was foremost in my mind as the doctor shared with us her evaluation and reasoning. I was surprised, therefore, in experiencing my first chemo treatment of “Session 2” that I found myself annoyed with petty inconveniences. Why is it that pettiness so often trumps rationality? Why was it so easy to become preoccupied by incidentals and apparently put aside the far more important benefits I would receive?
This is my schedule:
On a Sunday before my Infusion, I must report to the hospital for lab tests. We already have established a baseline of various components of my body’s chemistry, blood components and counts, cholesterol levels, triglycerides, magnesium and potassium balances, urinalysis, etc. I only have, to be frank, an embarrassingly vague understanding of how all these components work together, what they indicate, and what my medical caregivers learn from reading the lab reports. But study them, they do. Having established a baseline, they can learn, each time I report for a new infusion, how I am responding to the chemo.
The Monday following the lab tests, I report, early in the morning, to the Infusion Center. I receive a dose of steroids and medications in pill form to counteract the side-effects of the chemo I’m about to receive. Next, the nurse accesses my surgically-implanted port* and connects sterile tubing to it, flushing all the tubes and connections in the process, to make sure there are no obstructions or problems. My port makes it unnecessary for a nurse to implant an intravenous [IV] needle at the top of my hand (a process I distinctly do NOT like). After the tubing is in place, it is carefully secured with a large transparent sterile covering, for it will have to stay sterile and in position for the next 48 hours or more.
Meanwhile, the hospital pharmacy will have delivered my chemotherapeutic drugs. These come double-bagged in the unthinkable event of an accidental puncture. My nurse dresses herself in what I’ll call a “half-hazmat” suit. It differs from a “full hazmat suit” in that there is no plastic visor covering her face, and lighter weight material is used for the gown. Also, she does not have to wear sterile booties. Apart from those three details, she and her clothing are covered protectively, her hands are protected by sterile gloves and she wears a mask across her nose and mouth.
In a former posting from my first experience with chemotherapy, I expressed shock at the signs that hang in all the bathrooms of the Infusion Clinic. They read: CHEMOTHERAPY PATIENTS – FLUSH TWICE! This time, it was all these handling precautions that reminded me of the dangerous toxicity of the drugs I was about to receive directly into my heart and thence, pumped throughout my body.
Once everything is ready, the oncology nurse hangs the first of several bags of chemicals on the IV pole and connects them to the tubes going to my implanted port. The “drip” infusion begins. The infusion, itself, is painless. I am being infused with some associated “assistive” chemicals and three chemotherapeutic drugs, one of which (Fluorouracil) I received in my first round of chemo, and two of which (Irinotecan and Avastin) are new to me. The infusion process takes roughly 4 hours, during which I sit in a comfortable chair and read or listen to music.
During this first round, I had a strong reaction to the steroids I received in pill form at the beginning of the morning. Within an hour, I began perspiring furiously, dampening my shorts and my shirt and became decidedly alarmed, given that I’d witnessed the precautions taken in handling the drugs that were coursing into me. My nurse reassured me that I was simply reacting to the steroids. It was “nothing to worry about”. I, however, worried that the moisture would wick up through my khaki trousers making me look as if I was incontinent. I didn’t like the sweaty overheated feeling. I was annoyed that I “was required” to take the steroid pills.
Just before noon, I’d absorbed various bags of the dangerous chemicals. The next step was to replace the connection to the IV pole with a portable pump filled with a supply of the chemo drugs that I would take home with me. The pump is an ingenious device about the size of a fat baby-bottle. It contains an expanded latex or rubber “balloon” filled with chemicals. The pressure of the expanded balloon is enough to continually squeeze the chemicals, within, through the tubes. I would have the pump attached to me for the rest of the afternoon, overnight to Tuesday, all day Tuesday, and overnight to Wednesday. Sometime Wednesday morning, the pump would be empty. I could then go to the hospital to have it removed under sterile conditions.
After that, I’ll have two weeks to recuperate. Then the cycle will repeat: twice monthly for a period of 6 months (i.e. lasting to March/April 2017). Predictably, the chemo will accumulate in my body and predictably, the side-effects will testify to the disruption being caused my tumors. Unfortunately, while the process of beating-back my tumors will be taking place, numerous entirely guiltless but rapidly-growing cells of my body, eg. hair follicles, mouth surfaces, nerve connections, etc. will also succumb to the effects of the chemo. This unintended “collateral damage” is the cause of neuropathy, hair loss, mouth sores, nausea and gastro-intestinal turmoil.
But—cumulative side effects aside—this regimen is certainly “convenient”, especially given the alternatives. I am under the supervision of qualified medical personnel each time I begin an infusion. Proper drugs are available to me. I sit in comfort while each infusion begins, long enough to make sure there are no unforeseen reactions or complications. Having a portable pump gives me a great deal of freedom of movement and flexibility. As I noted, the chemo I’m receiving has been tested, monitored and adjusted for maximum efficacy. And the “assistive” drugs are designed to diminish the worst of the side-effects. There’s everything in this scenario to appreciate and for which to be thankful. I even travel to the Infusion Center, conveniently, by public transportation. It is, perhaps, unwise to drive when under the influence of chemotherapy, especially when the side-effects begin to assert themselves.
I came home Monday afternoon from the Infusion Center, somewhat emotionally tired by the experience and lay down for a nap. It turned out to be impossible because of the effect of the steroids. I was alert all night and dozed off for a maximum of 2 hours, still strangely and unnaturally alert in the morning. Steroids are powerful. Meanwhile, the long night was disconcertingly uncomfortable. I worried that I’d get entangled in the tubes that led from the pump to my port. I worried that I’d turn over and break open the sterile bandage containing the needle that provided direct access to my port. I worried I’d forget about the bottle when I rolled over. I worried that the pump wouldn’t work properly. I worried myself unnecessarily, but it continued the next day.
In the morning, I was annoyed I couldn’t shower. Then I worried I’d crimped the tubing by tightening the belt holding up my pants. I didn’t like the weight of the pump against the strap around my neck that secured it to my body. I didn’t like the way the pump felt against my chest, so I moved it. I didn’t like how it felt under my arm, so I tried another position.
MAINLY, however, I disliked the fact that I had let myself become preoccupied by petty insignificant inconveniences when I should have been celebrating the opposite: great convenience, joy in hopefulness, access to caregivers and effective chemicals; that I was under the care of concerned professionals and received their careful ministrations. I am so very blessed.
I don’t intend to exaggerate my preoccupation with pettiness. It’s only that there is such a great disparity between the benefits I am receiving and the petty insignificant nuisances I need to experience, that I am surprised I’d give the nuisances any “standing” to stimulate complaint. Yet, it seems often to be the case that the immediate annoyances of life, however petty, have a surprising power to assert themselves more strongly than rational comprehension and judgement can do.
I suppose this is because the annoyances are closely linked to emotions. The things that annoyed me provoked the side of the brain that works independently of rational and logical thought. They demanded urgent attention, not because there was a rational immediacy to them, but because all the things that bothered me were legitimate dangers. If I tangled the tubes at night, I could possibly dislodge the sterile bandages. If I accidentally crimped the tube, it could interrupt the flow of the drugs. If I didn’t pay attention to where, in physical space, my pump bottle was hanging, I could easily jar or crash into it by accident. So both sides of my brain were clearly working in the face of a dangerous situation.
A friend—on finding out I was undergoing a second round of chemo—asked me, solicitously and hypothetically, what on earth I could have done to deserve my situation. I’ve never thought of it that way. Rather, I’m always conscious that I’ve done nothing, in particular, to DESERVE the wonderful life I’ve been given. Life is a scrabble. And my scrabble has been slight compared to some. No wise person—whether spiritual or secular—has ever suggested that life should be a “walk in the park.” In point of fact, it seems that overcoming challenges and obstacles of life is a way of strengthening one’s character, reinforcing one’s values, and supporting one’s humility and gratitude.
I aspire to maintain a balance throughout the coming 23 more infusion sessions in this “second round” admitting and accepting annoyances and discomforts, but placing them in the context of hopefulness, mercy, gratitude and enormous good fortune. If you would, send a good thought my way that I succeed!