Chapter Four: The Chemotherapy Chain

Chapter Four: The Chemotherapy Chain

The surgeries were a month behind me. A few Tylenols a day replaced the Percocet. The stretched-tight abdominal muscles and skin now allowed me to bend slightly and walk rather than drag my feet.  Sleeping on my side was still over a year away, sleeping on my stomach—probably never. I had taken walks outside—up and down in front of our home. Physically, I was a mastectomy and breast reconstructive surgery survivor about 75% healed, emotionally about 50% of normal. The surgical scars were healing faster than the emotional ones, but a new adventure was before me. This was the long-awaited day—my first appointment with Dr. Elizabeth Prystas, my oncologist. (I was not yet out of the stage of saying to myself, "An oncologist—I don't want an oncologist. This can't be me. Oncologists are cancer doctors. Cancer only happens to other people.  Oh, I remember, I'm other people's other people.")

            Dr. Prystas is a young woman not yet forty. I could tell immediately that she was a good choice. After the normal weighing in, blood pressure, and blood sampling by her nurse, she examined me. Then she got a pad of paper and began to take notes on what she was telling me. She talked and took notes for two hours. At the end of the appointment, she handed the notes to me so that I could refer to them anytime I couldn't remember what she said. (I’m glad she didn’t expect me to take notes. Spelling all those medical terms would have been impossible.)

            In brief, this is what she wrote. She told me the stage of my cancer was between—IIB and IIIA, 2/16 nodes were positive with 3 questionable, the grade—III of III, the DNA measure—diploid 73% vs. aneuploid 27%, the S-phase was 11% which is moderately high. She told us which statistics were positives and which were negatives. She said the surgery gave me only about a 50% cure rate. She advised me to have chemotherapy followed by hormonal therapy for five years. She said, "In five years of women with your diagnosis, one-third will get well, one-third will continue to have trouble, and one-third will be dead. She told me about the standard chemotherapy for my diagnosis—Adriamycin and Cytoxan by vein every 3 weeks for 4 cycles. She explained possible side effects. Nausea would be moderate with nausea medication; hair loss was probable at 3 weeks from the date of the first chemo; my white blood cells would dip to a low point usually at day ten after each chemo treatment. She explained that my risk of infection would be highest then. My red blood cells could also be adversely affected to result in anemia. She said there was a likelihood of kidney/bladder irritation and that I should drink a couple quarts of water per day the first few days after each treatment. She said I could experience problems with diarrhea and constipation. She also told me about the probability of mouth sores. She said that Adriamycin can cause heart muscle weakness. She expected that the chemotherapy would throw me into permanent menopause with symptoms such as hot flashes, mood changes, skin and vaginal dryness. She explained that fatigue and appetite would be major problems. I'd have to find out what worked and didn't work by trial and error for myself.

            She offered me the chance to participate in three clinical trials, which I thought meant experimental studies. As she explained it, however, none of the treatments were untested. The purpose was to document comparative advantages and disadvantages of different treatments. In each trial there is a control group, which would receive the Adriamycin and Cytoxan—the protocol she prescribed for me. The experimental groups would all receive more chemo. Other drugs would be added in various combinations for up to twelve weeks longer. Then she explained that when I was six weeks passed the last chemo treatment (whichever I chose), I would begin to take the anti-estrogen pill Tamoxifen twice a day for 5 years. She explained that Tamoxifen's side effects were menopausal symptoms, nausea, weight gain and fluid retention, difficulty in losing weight, an increased chance of uterine cancer (1 in 400), headaches, and rashes. As an aside, she mentioned that in animals Tamoxifen caused liver tumors and cataracts. Tamoxifen didn't sound nearly as scary as the chemo drugs until I read about Tamoxifen on one of the investigational study packets.

            I read that the following side effect had been noted: hot flashes, headaches, nausea, vomiting, skin rashes, increased thirst, frequent urination, abdominal pain, constipation, mental confusion, swelling in appendages, loss of appetite, distaste for food, depression, dizziness, light-headedness, leg cramps, hair thinning, and fatigue. And that’s the short list.            

Clinical Trial or Not?

            I made an appointment for May 8, which was in 3 days. My mind felt like it used to when I had studied for days for college finals—on overload. As Richard and I were driving home, I asked the big question. "Which chemo should I take? Did he think I should be brave and help cancer research by trying one of the clinical trials? Did I have a duty, a responsibility to help find a cure by participating in a trial? I was feeling panicky inside wondering how we could come to a mutual decision. We had experienced medical decision-making before and not seen eye to eye without hours and days of talking it through. I didn't feel emotionally equal to that drawn-out process. As Dr. Prystas was explaining the options in her office, I had the feeling that the standard protocol was going to be hard on me, and that adding additional toxins and doses would be more than my body could stand. I remembered her words, "that the risks could be serious and substantial."  Of course, I did have the 50% chance that I would not get the experimental trial anyway. Nonetheless, I felt any chance put me at a risk I didn't think I could endure. I can't explain logically why. I felt so vulnerable. I waited for his answer. He said, "I think the standard protocol will be hard enough on your body. I don't think you could survive added drugs over a longer period of time."  Those were his exact words! A gigantic weight was lifted. To me, a mini-miracle had just occurred. It must be the right decision. I called Dr. Prystas when I got home and told her my choice.

            In the next few days I explained to my children what they could anticipate during my chemo. They listened, expressed concern, and pledged support. The morning of May 8, I woke up and went to the kitchen. After I had gone to bed, my children had obviously been busy. Around the kitchen they had hung a paper chain made of brightly colored paper. I learned they had figured how many days of chemo there would be and made a link for each day. I was touched by their creative sensitivity. There were 105 links. What would the next 105 days bring? I asked Christine to take my picture with the chemo chain.

Adriamycin is Red

            (I've been at the computer for an hour trying to write what it's like to have chemotherapy. I can't get the words to come out right. I keep deleting, deleting, deleting then going to get a drink. How can I adequately portray what it's like to be poisoned? I guess I'll start by describing the room.)

            The chemo rooms are small about 4 feet by 8 feet. There is a row of cupboards along one of the long walls. The walls have cartoons and sayings on them about chemo. One I remember has the Lone Ranger looking at Tonto who is saying something about Kemo Sabe. The patient lies in a large brown leather recliner.  The person who has come with the patient sits across the room from patient, and the chemo nurse (I told her she reminded me of the little old ladies in Arsenic and Old Lace) sits beside the patient. (The way the room is laid out, it would be more logical for the chemo to be put in my left hand. But since the left breast was the cancerous one, for the rest of my life I can't have anything done to my left arm.) The chemo nurse looks like an alien. Green protective clothing covered nearly every part of her. She had on two pair of gloves. She prepared a vein in my hand by starting an IV and gave me some anti-nausea medication and extra fluid through it. When that had dripped into my body, she came in with a very large syringe filled with a very bright red liquid. (The color in the syringe reminded me of when I told Carolyn, the oncology psychologist, that a red fluid was going to suffocate any remaining cancer cells.) She introduced me to Adriamycin by explaining that she would push it in through the IV site. "Are you ready?" she asked.

            I wanted to run away. I wanted to tell someone how mad I was about the whole cancer thing. Two months ago I was (at least thought I was) a perfectly healthy woman who got up each morning and did her work. I was happy and planning and accomplishing. No one had to take care of me or feel sorry for me or worry about me. Doctors and hospitals had made me sick. The surgeries made me very sick. Now I had just started to feel better and now the chemo would make me sick again. I was sick of being sick. I was mad, mad, mad, and I still had 105 days to go before I would start the long climb back to where I was before they made me sick. Those were my thoughts in the instant between the question, "Are you ready?" and my numbed nod. With that, Melanie began to push the Adriamycin. "It's going to be cold," she said. It was very, very cold and stayed cold all the way up my arm. Soon I was shaking. In about 20 minutes, she had finished the "push" and covered me with a warm blanket. 

Cytoxan is Clear

            Then she brought in an I.V. bag and hung it on the stand behind me. Cytoxan is clear and cold. This was much less traumatic. It just lazily dripped in over about an hour's time. When the bag was empty, I realized that my first chemotherapy treatment was over. I stood up, felt fine, and thought—chemo might make other people sick but not me. I'm tough; I'm strong; I'll surprise everyone. I'll just carry on as if nothing has happened.

Nothing Salty, Nothing Sweet, Nothing Bland, Nothing Crunchy...

            We got home about 4:30 that afternoon. I'll show them how resilient I am, I thought. I'll prepare a really nice dinner. I took several phone calls while I worked in the kitchen. I put the dinner in the oven and set the table. We had been invited to a wedding reception that night; so I went to take my bath to get ready. I was beginning to have a bad taste in my mouth but dismissed the sensation. I felt strange, unlike any feeling I'd ever had before. I needed to sit down. I asked Christine if she could finish dinner. I went to lie down. Every minute I seemed to feel worse. By 7:30 I was on the phone to Dr. Prystas telling her I was as nauseated as I had ever been (this from a woman who had four solid, miserable months of morning sickness with all eight children) and asking her if I could take a Compazine now. She said I could and should. I took the correct dosage and waited for relief. If you want to know how to spell R-E-L-I-E-F, for me it wasn't with Compazine. I spent the next twelve hours on the bathroom floor. When there was nothing left to throw up, I continued through the night with dry heaves.

            The next day was not much better. We tried another medication—Zofran, which cost $25.00 a pill.  Dr. Prystas had given me some samples—10 pills, $250.00 worth! I could hardly keep anything down. After three days I was back in her office having more anti-nausea medicine and fluid dripped into my body to rehydrate me. Friends called and dropped by. My mother and sisters were managing the house and the food.  A nurse friend called and said she wanted to bring me whatever sounded good to me to eat. I thought carefully, surely there had to be something. Slowly, I began, "Well, nothing salty..... (more thinking) .... nothing crunchy ..... (more thinking) .... nothing spicy ..... nothing bland ..... nothing sweet . . . ."  Every food I thought of literally made me sick.

            Water was my best friend. I didn't have to force myself to drink that half-gallon or so each day. I was that thirsty. I kept a sports water bottle with me all the time. The water washed away the nauseating taste for at least a moment and seemed to reduce the toxicity I was feeling. Water was the one thing that tasted good. I drank and drank and drank. I couldn't chew gum. Anything sweet felt like it instantly decayed in my mouth. Time ceased to have meaning. Days and nights passed but I don't know how. Soon I was at day ten, the predicted low point. I had to get cleaned up enough to go to the clinic to get blood tests done.

            Three weeks passed, and I was beginning to feel good enough to get up in the morning at a normal time and to reduce my naps to just two or three during the day. My energy level was still almost zero. I moved slowly from bed, to couch, to chair, to bed. But I was feeling better.  For those of you who have been there, you know what happened next. It was time to go back for treatment number two! To summarize my chemotherapy experience: two was worse than one, and three was worse than two.

            The third chemo was so difficult. I felt continuously nauseated to the point that I could not do anything, not sleep, not eat, not be distracted by visitors. I got a bladder infection with chills and fever. I had no appetite. The taste of something dead or rotting in my mouth and stomach never left. I ate because I had to. I couldn't concentrate. My brain felt fried. I called it “chemo brain.”  But the worst part was I felt so lonely, so sad, so sick, so dull like I was thinking through a haze.  Suddenly I knew. This is not me. The chemo had altered my ability to think clearly. Who am I? Who is this bald woman with giant sunken eyes and hollow cheeks? My skin had taken on an unnatural dark tone, kind of green, kind of yellow. The days were better than the nights. I felt alone. Loneliness is a synonym for cancer, I thought. The chemo had made me feel detached from the world.

             I could not summon the courage to go back for my last chemo treatment. I called the office and talked to chemo-nurse Melanie. How much risk did I incur by not returning for number four chemo treatment? She said she didn't have the numbers but in her opinion, it was not wise. Her advice, you only have one more. See it through. I felt there was a negative, discouraging voice inside of me whispering, "Why bother with the last treatment. You're not going to make it anyway; you might as well give up."

Man Over-Board

            A friend came to see me and brought a book about miracles. Somewhere in the middle of the book, I came to a story that identified the voice in my brain. Two men operated a small delivery business in Florida using a boat. On this particular day, one man was driving the boat; the other was in the back of the boat repairing something and had taken off his life jacket. Suddenly they hit some rough waters and the man in the back was pitched into the cold Atlantic Ocean. He was not too concerned because he was well-trained in survival and an excellent swimmer, and besides, his partner would notice he was not in the boat and come back to rescue him soon. He did all the things he had been trained to do including using his shoes as floatation devices, but they soon got water logged. After fifteen minutes he began to get tired. After thirty minutes he began to get worried. The sun was going down quickly. His strength was waning, and he felt his body temperature decreasing. After forty-five minutes he knew his situation was critical. His arms and legs could barely move. He knew the symptoms. A few more minutes and it would be all over. He had prayed repeatedly and now he heard a voice. At first he thought it was the voice of God. He listened. "The water is your friend. Don't fight anymore. You are going to lose anyway. It will be easy and comfortable."  No, that wasn't God's voice. God never tells a person to give up. This gave the man new courage. He would not succumb to the voice. Just as he drifted into unconsciousness, his partner returned and was able to save him. I knew that was a true story because I had heard the same voice. I took courage.

            This story became so very important to me. I knew that voice, that soft, seductive voice whispering discouragement. For many days, every time I let my mind go, I’d hear, “You’re going to lose anyway. Why fight?” I knew I had to do my part and not listen to that voice. I had to keep afloat until I was rescued.

Attitude

            Dr. Prystas' office had a quote on attitude by Charles Swindol:

            "The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company...a church...a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you. We are in charge of our attitudes."

            Another attitude adjustment came for me when I remembered the movie Cool Runnings, the story of a Jamaican track star who is the fastest runner on the Island of Jamaica.  He trains for the Olympic trials. During the qualifying race, he is accidentally tripped by another runner, falls down, and fails to qualify. His attempts to have the race rerun fail. He is told the only way he can get to the Olympics is in another sport. He learns of a former Olympic bobsled racer who lives on the island. He finally convinces this man to coach a bobsled team. Three other young athletes join the team, and their training begins. They train exceedingly hard and arrived in Calgary for the Olympics. No one gives this ragtag bobsled team any notice especially when in the first race they come in last place. But the next day they do much better. In fact the announcer says that they are the fastest team yet, and if they can finish the last quarter of the race as fast as the first three-quarters, they will break a world record. Just then the bobsled loses a runner and with terrible jolts the bobsled is tipped upside down slamming with tremendous force into the sides of the run. Finally, the bobsled screeches to a stop. Are they all dead? After a few moments the four Jamaicans begin to move. They climb out of the bobsled. They look over their situation. The crowd is silent. Then the track star who started the whole thing says to his teammates, "I must finish the race." The four of them with tremendous effort hoist up the broken bobsled, put it on their shoulders, and carry it across the finish line to thunderous applause. I knew what I had to do. I went back upstairs and wrote a big note to myself: "I am an Olympian. I will finish my race. I will have the last chemo treatment." 

Six-Month Update

            Six months later, I was mending. The "something dead" taste in my mouth had gotten better, but I still repelled people with my breath. I was back walking 45 minutes 5 days a week. I was able to keeping up on the cooking, laundry, and housework at a basic level, but I still fatigued early. At about eight at night, I was finished for the day. My appetite was returning although I had not gained any weight back. The feeling of loneliness still came now and then, but I recognized it quicker and had an easier time shaking it than before. I felt a little stronger each week. There were even moments that I forgot that I'd been ill. When I was asked how I was doing, I would answer, “Good enough”.

The One-Year Update

            After one year the depression, fear, and worry were infrequent visitors. I was able to concentrate again and do more than one task at a time. Looking back on the experience, one of the most important elements of my emotional recovery was doing normal stuff. I wrote my monthly newsletter. I taught my Sunday school class. I played lots of games with my children and sisters. I spent time with friends and family that usually doesn’t happen in our busy lives. I used to think of cancer, cancer, cancer every second of every day. Now days passed without thinking of how sick I had been or wonder if the cancer would return. When I was asked how I was, I answered, “Doing well.” I feel a rebirth. How thankful I was to be on this side of cancer. The chemotherapy chain was literally a chain of events that continues.

Support Session #4: The Chemotherapy Chain

1.  Write about your chain of events whatever they include. Since I did not have radiation as part of my first cancer experience, here would be a logical place to explain the testing and treatments you had.

2.  You can add photos wherever they fit in to your story.