cancerdancer

thoughts on living with cancer

cancerdancer

cancerdancer
Location
Midwest, USA
Birthday
May 20
Bio
At the midpoint of the journey's life I found myself lost in a dark forest with no straight path I could see anywhere. M.L. Rosenthal's translation of Dante's La Commedia Divina Diagnosed with ovarian and bladder cancers, I received an entirely new subject for writing and a challenge to intensify the second half of my life.

MY RECENT POSTS

Editor’s Pick
NOVEMBER 9, 2011 11:43AM

How to Spend a Day in Chemotherapy

Rate: 15 Flag


 Just as every body is different and every body’s cancer is different, every doctor, hospital, and treatment plan is different. But this is the only way I know, based on IV/IP [intravenous/intraperitoneal] chemo for ovarian cancer in 2007. I had five rounds [of a projected six, but the cisplatin and Taxol were causing hearing loss] over the course of four months: one Friday long day, 9-5; one Friday short day, 9-1; one Friday off. Repeat. Long days meant more chemo. Here’s how it goes:

Wake and have breakfast, with a chaser of an anti-nausea med, which must be taken at least an hour before the chemo starts. Dawdle if you are passive-aggressive; it’s not like going to a concert or theatre—they can’t start without you, and if there’s one nurse for four patients, not all chemo lines can start right at nine o’clock. Make nice with the friend or family member providing your ride in, who got up early just for you. On the drive, try to notice the beauty of the world around you. If you’re receiving chemo in a windowless room, you won’t see it again for hours.

At some point you will have to deal with this terrifying fact: the only way your doctor can think of to cure you is to inject poison into your system—in a controlled, hygienic way, of course. The poison will kill not only your wonky cancer cells, but also a lot of other things: your hair cells, those lining your mouth, the good bacteria in your gut. [One woman called it “liquid love,” but I couldn’t get there. Instead, I applied a principle from science: phytoremediation. A great word, it refers to the ability of some trees to take in the toxic metals—cadmium, nickel, zinc—from soil at clean-up sites and release them harmlessly into the air, without dying itself. Taxol is made from the Pacific yew tree. I thought of my abdomen, where a malignant tumor had exploded before my surgery, as a toxic waste site, with the chemo pumped in to clean up.]

When you arrive at the chemo room, greet your comrades, the familiar faces you will see each week. Be amazed at the cheerfulness of the room where poison is poised to enter your body. Marvel at the women who will leave from there for work, all dolled up in makeup and wig, wearing nylons and skirts. Be grateful for your baggy pants with elastic waistbands.

Next, arrange your supplies for the day. You might have packed snacks: if you are getting drugs through an abdominal port, your gut will fill up quickly. There will be no room for a sandwich. You pack little bits of things to nibble on throughout the day: pudding cups, fruit cups, a banana, crackers, yogurt—good for rebuilding your destroyed gut flora, dark chocolate. At some point in the course of treatment, you begin bringing plastic spoons and forks, because everything tastes like metal, and you cannot bear to use silverware.

You might have an iPod or some other device loaded with music or relaxation tapes. Perhaps you bring something to read, a book of Sudoku or word puzzles, a coloring book and pencils, or a journal. There may be magazines in the chemo room, but you will not find articles on anorexic starlets or how to tone your abs to your liking.

Try to think of chemo days as treats: nothing is expected of you. Don’t bring work to do, as you have learned to do for the inevitable long waits in the doctor’s office. [I declared Fridays mini-holidays, planning to reread all of Laura Ingalls Wilder’s Little House books, which a friend called “Comfort food for the brain.” That plan lasted one week. I needed something chewier; the sentences were too short, the plot too thin. Not feeling up to heavy-duty reading, I switched to magazines I brought from home—Smithsonian, Atlantic Monthly.]

Once you have settled into your recliner, which probably has a small television monitor if no other distractions appeal, pop more anti-nauseau drugs by mouth, a whole array of pink and green and white pills waiting in a small paper cup on the side table by your recliner. [I also took my megadose of Benadryl orally, because when I received it intravenously, I got sledgehammer headaches.] Your chemo nurse will start an IV of saline mixed with some more anti-nausea drugs. If you’re smart, you’re soon drowsy and drifting into delicious wooziness.

[This never happened to me. Anxiety prevented it in the beginning, and then the fear that I’d miss something if I weren’t watching kept me alert. Not that I was worried about my treatment being bungled without my vigilance, but so many little moments can go unnoticed, or conversations be missed. Some women turned on their personal televisions or brought headsets to tune out what was going on. I’m a voyeur and wanted to watch my fellow chemo patients and my nurses, with whom I had some great conversations while the other women slept.]

Once you’re hydrated and drugged, the chemo begins flowing in the IV. When that chemo is done, your nurse accesses your abdominal port [“Big stick,” she will say before inserting the needle], and another type of chemo begins. Some nurses will occasionally massage your belly to make sure the chemo is getting to all areas. You are encouraged to move around a bit in the recliner.

Chemotherapy is boring, not a bang but a whimper. You will sit in your recliner all day, tethered to a pole from which several bags of fluids containing your chemo hang. Movement is restricted to bathroom breaks, which are a comic dance of you and the pole on wheels and all the cords connecting your IV to them. If you are lucky, you may be in one of the places where visitors are permitted, and you can talk and play cards. [Our chemo room was barely big enough for four recliners and a small nurses’ station. Visitors weren’t allowed. People dropped us off at the door and drove away. I liked that, because it wasn’t overwhelming—I don’t like crowds, and the idea of entertaining others while undergoing chemo was a stretch for me.]

At some point during your treatment, those funny caps on display, which kind women have made for cancer patients, will become appealing. If you develop cradle cap—from the drugs, from your wig, from whatever plague assails you—your wig will become unbearable. You notice that the caps are lined with soft flannel. You take two, which is all you are allowed. When at home, you walk around hairless as a Sphynx cat.

The day concludes with yet more IV fluids, and you stagger out, bloated and tired from doing nothing all day. One woman weighed herself before and after; she had gained 13 pounds from all the chemo and fluids.

Perhaps your chemo nurse will walk you out and give you a hug. Your ride will be waiting, the car pulled up to the door. The most solicitous drivers will wrap you in a blanket, or take you out for supper, or drive straight home if—late in treatment when you are so tired you think you might as well go ahead and die— all you can manage is taking another nap. Some drivers will ask how you are, and you will not tell the truth, or you will follow Miss Emily’s counsel and tell it slant. The really sensitive drivers will give you permission to talk or to be silent and rest. You will marvel at the way the day has changed while you were in a small room being tended to—how it snowed, or the light has shifted, or the cows moved to another area of the pasture. At home, you will hug your driver and maybe weep a bit. On your last day of treatment, your driver will give you flowers and a small gift.

You will remember to take more anti-nausea meds over the next few days, because when you feel so good that you forget to do so, you will throw up. You will be so thankful for the people who are providing food and so sick of chicken soup you think about throwing up anyway. You eat a lot of mashed potatoes and mac and cheese, because these soft carbs require almost no effort to chew, and you have been told not to worry about weight gain. You will gain weight from the chemo anyway, so what the hell. The info packet you receive about nutrition during chemo suggests cheesecake, which goes down easily and is full of protein. Go ahead, indulge your poor bald and bloated body, trying so hard to keep you alive.

You will take the chemo home with you, of course, carrying it in your gut and your veins. Over the next few days, your body will slowly eliminate it; your pee will smell funny. You will take the steroids home as well. They may induce sleeplessness and manic energy. Clean your closets. Invite friends to a potluck. Host a soiree. You will be talking until one or two in the morning. You will be mordantly witty.

Your tags:

TIP:

Enter the amount, and click "Tip" to submit!
Recipient's email address:
Personal message (optional):

Your email address:

Comments

Type your comment below:
WOW. What an amazing birdesye view. I hope you're nearing the end of your chemo treatment.
I appreciate your bravery in sharing this story. Your writing is crystal clear. Thank you for sharing.
Sending you healing thoughts.
I don't know what to say other than, damn, you wrote the shit out of this.
You are an incredible writer. You had me by the guts the whole way. I am so sorry you are going through this chemo hell, though. R.
Thank you for this insight. I hope your ovarian cancer is long gone. My mother died of the disease, in 1979, when I was almost ten. Your writing is superb. R
I stand in awe of your courage; hope I never have to find out whether or not I could be as brave as you (in my heart, I think not).
Just when I thought I had a bad day... your description of a chemo day makes me count my blessings and put things in perspective. Rated. I wish you the best in health and happiness. Your grace through trial and suffering is inspiring.
Thanks for writing this. My own chemo finished at the end of June. Contending now with numb fingertips and soles of feet from the "therapy." But I'm alive and 100% cancer free, at the moment.
Hope you get to say the same when your treatment is complete. God bless.
How very accurate! My husband just completed 6 rounds of RCHOP chotherapy, for nonhodgkin lymphoma. And we actually got the call Tuesday that he is cancer free, words we've been waiting 8 months to hear. I hope you have the same results. And good luck to you and your family.
I work in oncology as a nurse. This description was out of the park. It is real. It is accurate. Putting you in my thought bank as you go through treatment.
Hey Cancerdancer! Beautiful piece! Keep after it, okay? You're doing us proud. Just a loving shout-out from a fellow o'cancer dancer.
Thanks, all, for the kind thoughts. This actually took place in 2007; I've been out of chemo and in remission for more than 4 years, which is a blessing beyond words!
congrats on the news. i have a question for you. how well did you cope going back to 'normal' life afterwards? did you have any problems, especially with the constant thoughts of 'now what?' i'm sorry if this is personal, it's something i'm having a hard time with, the rush of emotions afterwards, and coping with that. at least when he was sick, we had something to focus on. now, the thoughts just won't stop.
yes, Karen_Kay, it was hard to find the "new normal." What you and your family are experiencing is common. After all the attention and effort--you're suddenly on your own, not seeing doctor/nurse as regularly. And nothing to do--at least in treatment you feel you're doing something! To keep that illusion of doing something, I did research, changed my eating habits and my cleaning and personal care items. I also went into therapy, frankly, and joined a couple support groups/outreach efforts as a way to both give back and to hang out with people who understood what I'd been through. You've made me think about writing something on this topic, so thanks. Just keep putting one foot in front of the other. Also, I recommend a "game" a friend plays--Wouldn't it be great if? and thinking of positive outcomes rather than letting the scary thoughts win. My doctor said attitude is the best predictor of success--I'm not a Pollyanna, but it does help to be positive. "Hope is the ability to be cheerful in circumstances we know to be desperate," G. K. Chesterton wrote. Hang in there--it does get better!
I laughed, then cried. I have reminded myself to do two things. When designing a chemo room, to make it bright with windows, and have the internet, but keep it small enough for patient privacy. And maybe design a counter space for great lotions and literature.