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.

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JANUARY 27, 2012 10:31AM

Chemo makes your eyeballs swell

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Chemo makes your eyeballs swell.

It sounds like a school yard taunt, but the man who told me so—in a much more adult fashion—was a doctor.

 

When I travel somewhere I’ve not been, I’m the one who gets Fodor’s guides and reads up on the place, suggests interesting side trips. For the cancer journey, a chemo information session, comparable to the education session preceding my surgery, replaced the glossy books with their lovely photographs.

The rule for cancer is never travel alone. Single, childless, orphaned [if I want to be dramatic about it—my parents were both dead by the time I was 47, but that didn’t exactly qualify me as Little Orphan Annie, though a Daddy Warbucks would have come in handy] I nevertheless had the best of friends, one or another of whom was always available when I needed her. Or him—I had guy friends who offered, but I refused their help most of the time. I didn’t want to discuss my diseased but now absent ovaries with them. So Kathy joined me for this session, as she had for the surgery ed. one. I was sitting in my chemo ed. session, my friend

First, though, the surgeon had to check my port. He took my right hand and placed it over the already-healing incision so that I could feel the port, a hard little knot. I didn’t like being able to touch it; the physicality of it made it difficult to split off from my body and intellectualize what was happening. It made everything too real.

Doctors cannot tell their patients the truth about chemotherapy; the patients would run from the office as quickly as possible. They settle instead, as mine did, for “It’s not your whole life, though it will seem that way.” or “Your body won’t look like your body for the next six months.” Oh, no, dear doctor—a body exposed to toxic chemicals will never be the same again, even if the scars heal. Hair will grow back and mouth sores heal, but neuropathy and slight deafness remain, and “chemo brain” is no joke.

Next we were ushered into the chemo room. Stationed around the perimeter were two navy blue and two seafoam green recliners, each with a lap blanket; an attached bathroom was included. Even though no women were being treated, just being in the room made me queasy. Wigs waited on stands on shelving near the room’s ceiling and cloth hats were stuffed in baskets hung on a pole. Linda sat on a stool across from Kathy and me as we perched on the edge of the recliners, a two-pocket folder on the side table she pulled between us. Kathy took notes—when I looked back at them later, I saw that she’d titled them 1st Port-o’-call. Occasionally she reached over to rub my back when she saw the terror on my face escalating.

“We have four chairs here, as you can see. All but one have television sets.”

“That one will be my chair,” I asserted. Since college, when we’d had two television sets for the entire dorm, I’d not been good at watching television, especially during the day. Later I would come to envy the women who could distract themselves with talk shows or soap operas, but I’d made choices that had closed that particular path to me.

Linda shared information and risks about chemo from literature gathered in that two-pocket navy blue portfolio. I found the sheer amount of material overwhelming. According to the copy of the Chemotherapy Patient Education Form I had to sign at the conclusion of her presentation, Linda covered the following Chemotherapy Side Effects and Concerns with me: “chemotherapy action, reduction in blood counts, nausea and vomiting, diet, hair loss, leakage from vein, numbness/tingling in hands and feet, allergic type reactions, sores in mouth, diarrhea/constipation, aching in muscles or joints, hearing loss, damage to kidney, bladder irritation, skin changes, and mental changes.” They forgot the frogs and locusts. By the time she finished, I was nearly ready to give up and die of cancer before these combined horrors could finish me off.

 “You have to be careful during chemo not to let your temperature get higher than 103Ëš Fahrenheit,” Linda told me during our session. “The high temperature signals an infection. You must be very careful to avoid sick people and to wash your hands often.”

No fool, she took one look at my face and asked, “Do you have a thermometer at home?”

“No,” I admitted.

She went to a shelf behind us and handed me a thermometer packaged with a brochure asking Are you ready to start chemotherapy? The obvious response was, You’ve got to be kidding! Of course I’m not ready! It was an advertisement for a drug to “support your natural defenses to help protect against infection right from the start.”

“Now you do,” Linda said.

A thermometer was one of the many medical supplies for which I’d never felt a need. Despite Linda’s cautions, I had no intention of monitoring my temperature every day or several times a day. I was going to be fine, and I certainly wasn’t going to turn into a hypochondriac or one of those people who could talk of nothing but illness.

Several points were clarified for me: the effects of chemo were cumulative, and a round was two weeks on, a long day and a short day, with one week off.

“I expect I’ll feel pretty wiped out the first couple of days after chemo,” I said to Linda.

“Actually, you’ll probably feel pretty good, because of the drugs we give you,” she told me.

“Well, then, since church is the only thing scheduled at my house, I’d like Friday.”

When Kathy and I returned to my car, I threw the navy portfolio into the backseat, where it stayed for nearly a month before I could bear to bring it into the house. Even now, just listing the contents makes me nervous. The thermometer remained in its plastic wrap with the brochure I never read for the drug I didn’t take.

 

 

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Thank you for being here and for sharing your experiences. You've been a source of encouragement and inspiration for me, and I appreciate that you don't sugar coat anything. Chemo, after all, isn't a sweet deal. I'm also fighting the good fight for breast cancer. Chemo before surgery for recurrence. Just finished 4 rounds of every other week and my oncologist informed me I will be on weekly for 12 more weeks staring next week. I suppose it's time to share some of my journaling through this experience. Glad I found this place and glad I found you (and your favorites...all good stuff!). Thanks and thanks for sharing. Winking at you with my swollen eyeball!
Dear Dancer - I just laughed, wryly, in recognition. I remember reading the list of possible side effects for the chemo I got, and just stuffing in my files at home. It was 2-3 pages. In my "River of de Nile" state, I only wanted to have to deal with the side effects that actually appeared, not all the possibilities. So, of course, I was blindsided by the neuropathy that showed up after I completed the treatments. I was done, I was going to be all better! That's what I told myself and everyone else. We all wanted to believe it, clinging to "back to normal" like a life raft in New Orleans. So I'm laughing at myself now. This is the new normal, for me. Thank you for writing as expressively as you do. You've touched places in me I haven't had the courage to examine yet!
How far out are you? I don't know if this will be of help/comfort, but the time will come when you only think about cancer maybe once or twice a day. There never seems to be a day when it is not thought of at all, but after this part you describe, once or twice is sublime. Wishing you the best.
Wow. How completely awful. To heal you though, to heal you. That part I have trouble wrapping my mind around. You ended by saying you did not go for chemo?
I clicked as my sister-in-law and also a friend is going through chemo right now...
Thanks, all, for the affirming comments.
No, Just Thinking, I did get chemo, but didn't take the drug the thermometer was advertising, which I think was for low blood count. I did get some drug for that, but not the particular brand. My best wishes for the women in your life going through this. There IS life on the other side, though, as ccdarling says, it's a new normal.
It's taken me five years to be able to get this in a form to share. My first treatment was Feb. 2, 2007.
Pyleoflove, we do "fight the good fight," but I'm thinking that someday people will read about chemo and regard it as we do applying leeches and bleeding people. I'm glad I can be of some encouragement. The experience doesn't need to be sugarcoated; I want to present it as true as I can, without being pathetic!
Please know, prayers are with you...thank you for sharing your story.
I did not know that about eyeballs swelling. No wonder I've had vision problems. Thank you. And the Degas dancers (Degas, right?) are so beautiful.
Peace, love and light...healing, patience and all you need ! r
This is my first read. I am now going to go and read the rest. Ironically, I was slated for Netflix, but you changed that.
I beg of you and other cancer patients - use the thermometer! My mother had breast cancer but she died from sepsis. She hadn't been feeling well for several days, but she never checked her temperature and didn't want to go to the doctor. My brother finally overruled her and called an ambulance, but it was too late for the antibiotics to do any good. She died a week later.

You probably don't need to take your temperature every day, but you should take your temperature any time you're not feeling well, and see a doctor if it goes over 101.
Chemotherapy is poison that saves lives. It is still poison. I had 52 weeks of it. It destroyed my teeth meaning I had to have caps and a bridge afterwards. The steroids necessary to keep one from infection while on chemo bloat the body and that takes six months to a year to recover from. Chemobrain causes cognitive misfires such as homynym confusion which is a difficulty for me as an English teacher. It destroys all hormones so afterwards one has hormonal response to a stimulus but not a natural rhythmic hormonal cycle of any kind. Worse 25% of people who have chemo die of heart attacks - this can be reduced if patients have the proper tests along with chemo to test heart function. Sometimes insurance won't pay for those tests so this disproportionately affects poor chemo patients. And 25% of chemo patients will suffer PTSD for up to a year afterwards as I did which means poor self esteem, extreme fear, depression, and difficulty in dealing with other people. And the male partner of a cancer ridden spouse is many, many times more likely to leave the building. The medical bills afterwards can be as high as those during to deal with these issues. Happy Monday.
Thank you for speaking your truth. I'm so glad that you have this forum to share your experiences and I hope that you gain as much from writing about them as we do from reading them.

I look forward to reading more of your work.
I appreciate the kind words from all. Catnmus is correct--one should NOT ignore medical advice or pain. Common advice is two weeks, then go see a doctor. That is sometimes too long a wait with chemo. I'm sorry that your mother waited--my mom was like that, too, always thinking things would get better on their own. I hope everyone knows that this isn't a medical advice site. I was extremely fortunate; my body handled chemo pretty well, and I didn't run a fever.
Good Daughter--my doc told me not to have an eye exam during chemo regimen or change my px for glasses, b/c it would change again after chemo.
Dorinda--I'm so sorry. Everything you write is true, and I wish it were otherwise.