My favorite ride at the amusement park is the rollercoaster. This does not in any way make me unique, and as far as obsessions are concerned I am in the 'not-even-qualified' column when it comes to rollercoaster-mania. But I enjoy the speed and the gravity swings, and the quick changes of direction. Two minutes of pure excitement.
This other thing that I am doing is a distinctly different kind of rollercoaster ride. Every week I am willingly subjected to an infusion of something - either the FOLFIRI + Erbitux/cetuximab, or just the Erbitux/cetuximab. I actually feel the best healthwise just before the bi-weekly FOLFIRI treatments, due to the morning hour spent exercising with other cancer patients/survivors. I kinda think of that as getting into the rollercoaster car. Then there are several hours of accessing my port, drawing blood to see if my system can handle another dose of chemical badness, talking to the oncologist about bloodwork and a myriad of symptoms, and then actually sitting in a recliner in a room for the 4 hours of infusions (beginning with a benadryl and dexamethasone - one makes your drowsy and the other jacks you up.) This would be part of the slow uphill climb section of the ride, and I know that each ride lasts two weeks.
After the benadryl/dexamethasone, I get an hour or so of the cetuximab, and then there is an hour of observation (to see if I have a bad reaction to the cetuximab - which apparently can happen anytime, even if you have already had seven treatments of the stuff). During the observation hour, I receive an hour-long infusion of irinotecan, a big dose of leucovorin, and then a bolus (injection that is literally pushed into my port line via a large syringe) of 5-FU. And the final piece is fitting me with the 48-hour 5-FU pump. OK - we are nearing the top of the rollercoaster ride, and I need a nap. Hang on!
Oh, wait, you need to hang on for 48 hours. And listen to the pump's slow metronomic whirr-bzzt while you go about your daily business. I must keep the access port clean and dry (showering is a real production involving waterproof tape, Saran Wrap, and torturous chest hair removal each day). Once I finish my morning ablutions, I have this nifty elastic pocket (http://www.PoppyPocket.net) that helps me be mobile and relatively comfortable.
Still hanging in there, in the rollercoaster car? Well now I have to go back to the clinic to get "de-accessed" and it is late Friday afternoon. I managed a couple of days at work, and ate some stuff that I cannot remember the taste of, but now the ride really begins. After the pump is disconnected, I begin that fast descent into a fog of fatigue and gastrointestinal confusion. The next two days are virtually horizontal for me, and my energy evaporates. I am tired, both physically and in spirit, as my body tries to figure out just what is happening.
To combat the side effects of everything, I take a combination of antibiotics, stool softener and anti-heartburn pills, and Vitamin D. I watch what I eat - so as not to inadvertently encourage constipation or diarrhea, and I constantly apply some variety of lotion, antibiotic, creme, aloe, and moisturizer to my face, scalp, arms and back. My fingertips are splitting due to the dryness, and I am a whiny pain to be around, in my opinion.
But the ride gets better! Some of the time I am really excited, and energized for a bit, before I need a nap or down-time. By Monday and Tuesday of the week following FOLFIRI, I am feeling a bit more normal, but then on Wednesday I get another dose of Erbitux/cetuximab. This only takes about three hours, but it is a reminder of the skin/scalp side effects, and I have to go back to the clinic and sit in the chair to receive it. But even with the slow hiccup that this represents, the ride is winding down and by Friday I am feeling pretty good. There is a Saturday through Wednesday morning respite, and then the ride begins again. Woo-hoo!
After the treatment (should my blood work allow it this next Weds), we will schedule a CT scan to see how the tumors are responding to the chemo-therapy. I am both nervous and excited to find out what is happening inside my liver. The emotional rollercoaster is far more challenging than the physical one, and it is a ride that I am on mostly by myself. But then, if you think about it, all of our life journeys are first and foremost an individual one. Thank you one-and-all for witnessing, and supporting, mine.
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5 comments:
oh sweet eddie, the emotional roller coaster is the toughest, as you said. it's hard to anticipate its up downs and curves, but sometimes a loop thrown in at the last moment can turn a bummer into a blessing.
your story is inspiring, thank you
Take it from a Class A rollercoaster freak (that would be Mikey): look for the unexpected loop. . .
That is a brilliant metaphor, Ed.
My friend, Ed. I so admire your strength, perseverence and prose. I wish, I wish, I wish that you could sit this one out. Maybe you could ride the carousel this week?
Kay
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