Doing Battle with the “Grim”

by NotDownOrOut

Wednesday, November 30th was the start of week three of chemo and radiation. It was a roller coaster ride in an unpleasant sense.

Everyone has been warning me that week three of chemo and radiation is bad. I started a little early. Thanksgiving was the day after my last chemo session. I was feeling pretty good. Mom and I went out for dinner with Danny, Lisa, Aunt Joan, Bernie, Gail, Al, and John. It was very nice.

I went home the next day and rested. I felt tired but otherwise okay. Later that night I started suffering gastronomically. Without getting too graphic, let’s say I ran to the bathroom about twenty-six times between bedtime and the next afternoon. Saturday to Sunday and Sunday to Monday were just as grim. I was feeling like some normally trusty equipment had turned inside out. I read every cancer pamphlet I had without finding any tips that made a difference.

On Monday I went back for more radiation. The doctor put me on Imodium, which worked, but not before I was exhausted and fried.

My niece Maureen and her fiancé Justin drove from Maryland to Chicago with their dog Koemi. They arrived Monday morning and stayed with Mom. They came to take me to my Wednesday treatments.

On Tuesday, I went back for more radiation and blood work. I realized that my chemo date had been changed to Thursday. That was an impossibility for me as I teach 6-9 p.m. Thursdays. I could not imagine a marathon day of treatment followed by a class. I attempted to get the problem fixed when I went for my blood test and was told my choices were to come Thursday or skip this week and delay the completion of my treatment.

I am not prone to crying, but the news hit me hard. I was feeling so frustrated because the clerk kept saying I should have caught the error at the time of my last chemo session. I was so loopy on Benadryl that day that I could never have figured out what day of the week was December 1st. Of course, I did not give in until after I had “emoted” as much as I could. As my friend Mary said, it sounded like the scene from Terms of Endearment when the mom wants the nurse to give her daughter morphine for the pain. Sometimes things feel so urgent that it is not possible to stand back and reflect. Everything is immediate. I find it hard to plan. I want what I want now—a little childish.

My nurse came out and I asked her if there was any way to resolve this issue. She agreed to squeeze me in. I was so grateful. I was certain a crisis had been averted.

That night I taught my Naperville class and ended up at Mom’s for the night so that Maureen and Justin could drive me into the city the next morning. I wanted to leave at 6 a.m. as there is a line that forms in the hospital lobby for riding up the elevator to the chemo clinic at 7 a.m. It’s first-come, first-served at the hospital as everyone’s appointment is scheduled for 8 a.m. and the signs say that you should be there an hour early for “you” [sic] appointment.

Neither Maureen nor Justin is a morning person.

I was up at 5 a.m. Maureen and Justin got up, but it was a production. Koemi would not use Mom’s backyard for her “business.” She prefers to go for a walk. So Maureen took her for a brisk walk in the icy morning air. Then there was the warming of the leftovers from the previous night’s dinner. Lemon chicken and rigatoni. Then there was the mixing of the protein drinks the two carry with them. At 5:57 a.m. Maureen decided to take a shower. I had not yet seen Justin. Maureen made him an English muffin. She went up to dress.

I went out to start the car. Considering all of the hoopla, we did pretty well. We were on the road at 6:10 a.m.

At the hospital we said good-bye at the elevators. Maureen and Justin went off to sightsee. I headed for chemo.

As usual, the waiting area was stuffed. It’s an eclectic group. There are a group of knitters. One woman is beautiful and wears exquisite garments, many of which are hand-knitted. She has a circular scarf, sort of a cowl, that I keep admiring. Two of the women are chemo patients. They have made their own caps to cover hairless heads. The caps are beautiful. The women choose a corner and compare projects while they wait.

Then there are the “married men.” They may not be the only married men in the room, but several have their wives with them. The wives carry grocery bags filled with food, water, ice, meds, sweaters–anything they can think of to care for the men in their lives. Sometimes there is a daughter along and the pair of women hovers.

The clerk keeps announcing that chairs are for patients and others should stand. Even that does not open enough chairs for patients. The wives and daughters will take the man’s seat every time he gets up to sign papers or get a hospital wristband. As soon as he returns they hop up and get him settled. The women find themselves propped against the few bare walls around the room. One crook of a man’s finger, and the women rush forward with water or a snack.

The “married women” don’t have the water and food. But there are several men who are quite attentive. The men don’t care that they should stand so more patients can sit. They sit next to their wives and the women rest their heads on their husbands’ shoulders. These don’t strike me as being very demonstrative men, but it is very touching to see them supporting their wives in this way. You can tell that it makes their wives feel better.

There are many more women than men and more of them are alone than accompanied. Some of them are extremely fragile. You don’t see many bald men, but there are many women wearing wigs, hats, or scarves. Many are very thin. Some have wheelchairs or walkers with a seat. It’s cold this week. Even wrapped in long coats, their feet shod in heavy boots, their heads covered with hats, these women look frail enough to fly away if they walk outdoors.

It’s disturbing how many young men are there. There are four or five men who may be younger than thirty. They dress tough: black leather jackets, low-riding jeans, long chains, and work boots. There are fewer young women, but one must have thyroid cancer. She wears a neck brace and covers a scar on her throat. Her eyes are the most painful to look at because, when I do, I see a child’s bewilderment. Her son cannot be more than about three years old. She cannot carry him. He looks bewildered, too.

There’s no good time to have cancer, but it feels tragic when I see these young people doing their best to shrug off their surroundings or their situations. I’m not sure why it is, but they never offer their seats to persons older than themselves. They never move down a seat so couples can sit together. There is defiance in the lines of their lips, necks, and shoulders. They tend to sit with feet far apart and elbows out. They plant themselves. Is it bravado? I cannot be sure. Perhaps they understand that they appear tragic and don’t want to let that image define them. Maybe that is how youth survives in every situation. It plants itself. It weathers. It succeeds.

It was a long wait this week. My nurse came out for her first set of patients, saw how far down the list my name was and shook her head at me. I would have to wait for the next “seating.” I was a last minute addition, but, unlike many patients, I had already had my blood tested. Many people do not also have radiation treatments. They have to be tested before they can get chemo. They wait for the phlebotomist. Then they wait for results. Then they wait for chemo. I was not going to wait as long as they would, but I was not going to get in and out quickly.

I ended up waiting until 10 a.m. My wait was long in part because the pharmacy did not have people’s drugs ready. The nurses kept coming out to announce that no drugs had come up yet. I had a book to read, but it was not an environment in which you could relax. People were buzzing with anxiety. The TV was loud. The place was crowded—standing room only. I wanted to doze. I struggled with that feeling.

I’m always waiting these days. I spend most of the time on a basement level. My phone doesn’t work there. I don’t have a smart phone. I can’t use my phone for anything. I read some. I listen to some music if I do not expect to be called for some time. I don’t always enjoy my own thoughts. I tune out completely. I just sit. I cannot say I enjoy it. I just endure it like everything else relating to this cancer.

At 10 a.m. I went back to be weighed. I was assigned to a chemo chair. Mine is a 3-hour appointment so I get a chair with a TV. I can’t watch the TV. It makes me jumpy. There’s always a TV in the waiting rooms. I don’t like the a.m. talk shows. I turned it off. The nurse turned it on. It’s a free drug if you can bring yourself to take it. When she went away I turned it off again.

The treatment starts with the needle. We’ve been using my left hand. She has tried to use the outside of my right forearm, but it never works. I’m not sure why we never try the crook inside my elbow. The nurse stuck me on the back of my left hand about an inch below my thumb. The needle is flexible. It goes in at an angle, almost parallel to my skin. She taped it down and the needle sort of bent. It was uncomfortable. I didn’t complain. I was getting squeezed in after all.

The Benadryl came first. It hit me hard, like I got drunk on an empty stomach. She started the Taxol. I had an allergic reaction. It took awhile to locate my nurse in the crowded room. She shut off the Taxol and gave me more Benadryl. Rock-a-bye, baby. One minute later I was having trouble focusing. The nurse started the Taxol again, but did not connect it to me. A little while later I realized Taxol was running out onto the floor. I could not find my nurse. I think she actually got a break, which I cannot begrudge her. She works non-stop. I flagged another nurse and someone came to clean up the drug. It might have been my nurse. By that time I was too much in the throes of the session to focus. We never finished that bottle of Taxol. We moved on to the Carboplatin. It hurts my hands so I knew when it started. The reactions were still pretty powerful, but I could not find my nurse and so just got through it. I did not get out of there until 2:25 p.m. When it was time to remove the needle from my hand, the tape was so securely stuck to me that the nurse had to tear it off. The needle came out with a “twang.” It was just another reminder that you should be careful what you wish for—in case you get it. I was so determined to stick to my schedule. Maybe a marathon on Thursday would have been better.

Off to radiation. There was no one waiting and the team was not ready for me so I waited awhile. I was still feeling overwhelmed by the drugs. The radiology nurse kept asking me whether someone would be taking me home as I could not drive. I assured her that I had a ride home. It turned out to be a big day for radiation, too. I generally get “zapped” five to six times. That day it was eleven. By the time they finished, I was “done.” You have to have a full bladder. Let’s just say I was embarrassed to leave the table a little light.

As I rushed to the closest bathroom I realized that my hospital gown had become caught in the front. I realized this because a man seated in the waiting area said, “pretty picture.” Of course, He could see some of the huge X’s drawn on me for lining up the radiation session (and some body parts I don’t commonly flash). I am grateful for the Benadryl. The next day I could no longer recall his face. My memory’s failure will spare me embarrassment when we next meet.

Maureen and Justin came to get me. We drove home, had dinner, and Mom managed to get me to lie down on her bed. I slept for two and a half hours. When I awoke everyone else was in bed. Mom was buried in a blanket on the living room couch. It was only nine thirty at night. Mom got into her bed. I went back to the den couch. I survived chemo for week three. In a couple more days I will have finished half of my radiation sessions.

It is the toughest thing I have ever experienced. However, my life’s experiences have been pretty tame. I’ve never been seriously ill before. I never gave birth. My worst pain before all of this was from a dental procedure. I know that my pain is not the worst imaginable. I see people every day with tougher burdens. All I can say is that it has to be endured. Thursday morning I had to get up and go back for more radiation. By that time my urinary tract was so burned by medications and radiation that the week’s painful gastric episodes had faded from immediate memory. I had to take a urine test to rule out an infection before they could give me anything. I got through my Thursday night class by gritting my teeth and sitting gingerly. They have been saying this is when the side-effects start to peak. I fear that the best case scenario is that it’s a plateau that I must walk for three more weeks.

During my Thursday night lecture I drew a blank. I wanted to use the word vowel, but it would not come to me. Even when the students said it I could not say it aloud. The word was gone. It took about five tries before I could say it. I have never had that experience before or since.

This morning I was at the hospital at 5:50 a.m. I was fourth in line for radiation. I needed medication to help deal with the burning in my bladder. I could do anything to get it. The radiation has burned the bladder. The chemo drugs have killed off cells that can’t evacuate soon enough. It is a pain that continues day and night and is not just associated with urination. I feel it from the base of my teeth to my groin. This pain will only get worse in the next three weeks.

I don’t think the men liked it that I was number four in line. There’s a club of men about a decade older than I am. They like to let it all hang out in the changing room where we wait to be called for radiation. I closed my eyes and practiced breathing. I used to make fun of people who had to practice it. I don’t any longer. Sometimes it is very calming to aim for one breath at a time. I can do anything for one more breath.

The nurse told me that she could not recall seeing a more perfect urine test result. I laughingly said, “I’ve always been an overachiever.” She commented on my clean living. I guess . . . .

She got me a prescription. The drug won’t stop the pain. It just helps a little. It turns my urine the same intense orange of an Easter egg dye. And it’s already stained my toilet seat orange. Even the OxyClean bar that hangs in my toilet is orange after a couple of hours. But I have managed to sleep for almost five hours since I returned home from the pharmacy. That is a blessing for which I am profoundly grateful. This is what passes for ecstasy now.

What troubles me most is that we do this to children.

I understand the desire to extend life. I can imagine making the decision to do whatever is necessary to save the life of a child. But I ache at the idea of experiencing this kind of pain for a period longer than six weeks. I shudder as I imagine some of the procedures I will not have to undergo that children with cancer do. Medicine can produce miracles, but the real miracle has to be that the human spirit can survive under this stress. I have known several people who have fought cancer for some period in their lives. I never understood what they faced. I cannot imagine it now. I am currently on a short trek through this disease and I find it all-consuming for most of my day. Their challenges would overwhelm me.

When I have time away from the hospital and work I talk to family and friends. I look at the crazy get well cards my friend Roberta sends me every few days. I remind myself that this is the price I have to pay to achieve that five-year survival goal. I study the hair around the part in my hair for signs of more scalp. I appreciate all of the people who make my day work, even the people who make it tough. I practice breathing. I can do anything for six weeks if I can do anything for one more breath.