Chapter 51: I Wouldn't Wish This on My Worst Enemy

May 28, 1983, Chicago, Illinois

Keiko and I arrived at the cancer treatment center at Rush-Presbyterian at 7:40am, and she began the admission process. It was somewhat abbreviated, as most of the paperwork had been completed during her visits with Doctor Morrison. Keiko showed her ID and insurance card from Blue Cross, signed her name about a dozen times, and then we were escorted to a private room, necessary because she'd be what Doctor Morrison had called 'immunocompromised' by the chemo and other drugs she'd be given.

"Did you bring athletic clothes and a robe with you?" the nurse, Mary, asked Keiko.

"Yes. I have three sweatsuits with me and a knee-length robe."

"Please change and get into bed. It's OK to leave your panties on, but not your bra. Doctor Williams will be here shortly. I'll come back and draw blood, and then a chemotherapy technician will set up your IV. We won't start the drugs until the blood work results are known."

"Thanks," Keiko said.

The nurse drew the curtain around the bed to offer privacy.

"Do you want your friend to step out?" the nurse asked.

"No," Keiko replied. "He's my boyfriend and we're lovers."

The nurse smiled and nodded, and left the room. Keiko changed into her navy blue sweats, and I folded her clothes and put them on a shelf in the small closet. Keiko got into the bed, which was adjusted so she was half reclining, and I helped her draw up the sheet and covers. About two minutes later, the nurse returned with a tray that contained the tubes and syringe she needed to draw blood, but rather than a needle, she drew blood from the IV port that had been inserted by the surgeon earlier in the week.

"What tests do you run?" I asked.

"CBC, ABG, Chem-20, and a full metabolic panel. A 'CBC' is a Complete Blood Count, which tells us the number of each type of blood cell; an 'ABG' is Arterial Blood Gas, which measures oxygen and carbon dioxide in blood; a 'Chem-20' measures a number of other components of blood, especially electrolytes; a full metabolic panel tests liver function as well as glucose levels. We'll monitor those every day."

"Now I'm really glad they put in the IV port," Keiko declared. "Otherwise, I'd be a pincushion!"

The nurse left the room briefly to hand off the tubes of blood to someone to take them to the lab, then returned to take Keiko's vital signs.

"Everything looks good," Nurse Mary said. "Your pulse is a bit high and your blood pressure as well, but that's normal from anxiety and adrenaline. We can give you a mild sedative if you think you need one."

"I don't think so," Keiko replied. "I'm nervous but not panicking."

"Just so you know, the sedative we'd give you is very mild and would basically simply take the edge off. You'll most likely want a slightly stronger one so you can sleep."

"No, thank you," Keiko replied. "At least for now. May I ask about visiting hours?"

"Doctor Williams issued a twenty-four-hour pass for your boyfriend. That's not something usually done, but given he's your designated support person and has your medical power of attorney, the Oncology Chief approved. He'll bring it in when he arrives.

"Thank you," Keiko said.

"Thank you," I added.

The nurse left and returned about ten minutes later with Doctor Williams and a technician.

"Good morning, Keiko," he said. "Your vitals look good. How do you feel?"

"Better than before the transfusion, but nervous."

"Completely normal. Mary said you refused the sedative. I'd encourage you to take it because you'll find it difficult to relax today. It's not required, but I do strongly encourage it."

I was tempted to comment, but this was something that had to be Keiko's decision. I felt she should, but it was absolutely not my place to say.

"OK," she replied, acquiescing.

"Mary will get it for you. This is Mario, and he's going to hook up your IV and put on EKG pads. We won't start the drugs flowing until the lab results are back, but we will start an IV with D5 Ringer's lactate — that's electrolytes and glucose. We do that because chemo creates chemical imbalances and potential nutritional problems. Do you have any questions before he starts?"

"No."

"The IV unit he's hooking up is mobile, so you'll be able to take walks, go to the common room, or use the restroom. I encourage you to walk, even a short distance, every few hours, especially if you don't feel like it. We see better outcomes from patients who are at least minimally active."

"I'll encourage her," I said.

"Good. I have a twenty-four-hour pass for you. It will get you into the hospital at any time and allow you to stay with Keiko as much as she can tolerate. A student nurse will make sure a blanket and pillow are available for you."

"Thanks."

"Keiko, are you warm enough?" Doctor Williams asked.

"Yes."

"OK. If you feel chilled, which is common, press the call button, and a student nurse can bring you warm blankets. Mario, you can begin."

Mario set up the machine, plugged it into the wall, and then connected the lines. He hung a clear bag marked 'D5LR' on a hook, connected it, and adjusted the flow. Then he put five EKG pads on Keiko's chest and arms, connected leads, but left the end dangling.

"The chemo induction machine has a battery," he said. "It'll run for about two hours not plugged in, and it takes about four hours to fully charge. When you want to walk, simply unplug it, ensure the display is on and the light is green, then coil the cord on the hook. When you finish your walk, plug it in again and ensure both lights are green. In the common room, there are plugs by every recliner. I'll hook up the EKG when I come back, and we'll get a baseline, but then I'll disconnect the wires so you can move around. Any questions?"

"No," Keiko replied.

"I'll be back with the chemo as soon as Doctor Williams sees your blood test results."

Doctor Williams, Mary, and Mario all left the room, and I sat down in the recliner. Mary returned a moment later with a small paper cup with a pill and poured water from a pitcher on a rolling stand next to the bed into a plastic cup. She gave them both to Keiko, who took the pill. Mary wrote a note on the chart, then left the room.

"I plan to visit every day," I said. "Unless you tell me otherwise. I have clothes in the car, so I can stay the night tonight, if you want."

"Why don't you plan to go home to sleep," Keiko said. "There's no point in sleeping here."

"I don't mind if that's what you need."

"I'm not sure what I need," Keiko sighed. "But I know YOU need to get enough sleep, finish your class, and go to work."

"And I'll figure out the right balance, as I promised. I plan to spend the day here tomorrow, and on Monday, I'll come in the morning because of the party. On school nights, I'll come here right after class. I already discussed with Violet that we'd skip our pie and coffee after class for the next week, and then the following week is exams. Violet will want to come see you, I'm sure, as will the other girls."

"Bianca said she'd coördinate," Keiko said. "She'll check with me before they come. She also said she'd make sure my clothes were washed. You can take the one sweatsuit a day home, and I'll rotate through them."

"OK."

"We should talk about the medical power of attorney," Keiko said quietly.

"Tell me what you want me to do," I replied.

"First, I want to beat this and recover fully, and I know it's going to be difficult. But, if there comes a time when there isn't a reasonable chance of remission, I don't want what they call 'heroic measures'. If I'm to die, I want to be at peace, not hooked up to a ventilator. I'm not signing a Do Not Resuscitate order, at least not now. Promise that if it's inevitable that I'm going to die, that I be allowed to die in peace."

"What do you consider a reasonable chance?" I asked.

"I don't have a specific answer," Keiko said. "I trust you to use your best judgment. It's perfectly OK to seek counsel from my grandfather, but I trust you to make the right decision. Please do not listen to my parents, especially my mom; she'll insist they keep me alive even in the most hopeless situation."

"What you're asking me to do is difficult," I replied.

Keiko nodded, "I know. But you're the most level-headed, analytical person I know. I also know you care deeply for me, and that means you'll make the right decision."

"I'm a bit confused about your mom. What you've said seems contradictory."

Keiko smiled, "Because she is. She's torn between two different worlds — Japan and America. She's very traditionally Japanese and also has Western ideas, and they are in conflict. That causes her to behave in ways that seem erratic."

"You and your grandfather seem to have found a proper balance."

"Because we're both second-generation or third, for me, if you count through my dad. Mom has the usual struggles of a new immigrant from Japan. My grandfather's overriding philosophy is from the principles of Shōtōkan karate, and he has adopted many American values, though not American religion. My views are similar — I am an American of Japanese descent, and my views are similar to my grandfather's and my dad's."

"Did your dad practice karate?"

"Until about three years ago when he tore his ACL while playing soccer with friends. He decided to stop practicing regularly at that point."

"Did you have some specific conflict with your mom growing up?"

"Just the usual, I think. She felt I wasn't respectful, and I felt she was too demanding."

"But your grandfather?"

"Never demanded respect, he simply gently guided me to the place he felt I needed to be. It's how he deals with his karate students. The real conflict came when I met you."

"Is this a 'racial purity' thing? She wants grandchildren who are fully Japanese?"

"Yes. She made that clear when I went to my Senior Prom with a Caucasian boy. That was my first real date; before that, I'd only gone out with groups of friends."

"Did you go out with him again?"

"No. It was just Prom, and it was just as friends. Of course, I didn't say that to my mom and simply let her think it was a real date."

"That would seem to be contrary to your grandfather's approach to being respectful to your elders."

"I'm not exactly consistent," Keiko said. "Similar to you and your grandparents and you and your cousin."

"Point taken," I replied. "Did you accept the invitation because it would bug your mom?"

"Maybe partly," Keiko admitted. "But I really did want to go to my Prom."

"And me?"

"I was attracted to you, and after Ellie talked up how awesome it was, I wanted to do it with you. It would certainly have annoyed my mom, but I wasn't about to tell her. She made an assumption when I moved in, and I simply refused to discuss it, pointing out that I had my own room."

"Hi, Keiko," Mario said, coming into the room. "Your labs came back, and everything is in range to begin your chemo. First, I'm going to run an EKG strip for thirty seconds, then I'll connect the IV bags with the chemo drugs."

He did as he said, then left the room. Mary came in a minute later.

"You may feel nauseated, have a headache, develop a rash, or simply feel itchy. If any of those things happen, just press the call button. They're all normal reactions, but we need to check to be sure. I'm going to take your vitals once per hour, starting now."

"What about the catheter for my spine?" Keiko asked.

"A surgeon will come see you later this morning. It's almost identical to the procedure you had before, but this time, they'll leave the catheter in. It has a valve similar to the one on the catheter in your chest. You will need to stay on your side at that point."

Mary connected a meter to Keiko's finger, and a display showed her pulse, temperature, and oxygen levels, all of which Mary said were fine. She also checked Keiko's blood pressure, which was fine as well.

"I'll come back and check on you," Mary said. "Don't hesitate to push the call button if you need anything or if you have any reactions to the chemo."

"OK," Keiko replied, and Mary left.

"Back to what we were talking about," Keiko said. "When I first came to you, it was simply to experience what Ellie and the other girls experienced. But then it was clear that we were compatible, and we both liked each other. I knew my mom would object, but I didn't care. And I know you aren't arguing that I should respect her wishes."

"Not a chance!"

"And you obviously don't have a problem with me being Japanese."

"Obviously, given I consider it a positive thing! And if we have cute little girls who look just like you, we'll need to hire security guards when they turn fourteen or fifteen!"

Keiko laughed, "I did get a lot of attention from boys, but I wasn't interested in being a couple. I actually wasn't thinking about that at all when I came to see you."

"And all it took was a night of great sex, and you were ready to be my girlfriend?"

Keiko laughed, "I could say 'yes' to that, and it would be true because it was awesome. But you know it's more than that."

"I do."

"And it's not just great sex in your mind, either, because you have so many options. Would you hand me my book, please?"

"Sure."

I opened her bag and took out the book.

"Les Misérables?" I asked.

"It's about redemption and takes place in France following Napoleon's loss at Waterloo. It's probably the best book written in the nineteenth century."

I handed her the thick book, then pulled out the latest issue of The Economist and began reading. Mary came in about forty minutes later to check on Keiko and let her know the surgeon and an oncology Resident would be in shortly to insert the catheter and begin the intrathecal treatment. She reminded Keiko that she would have to lie on her side while she had the catheter. She also let Keiko know that the treatment would last about four hours each day for the entire week, but she'd be able to walk during that time.

"Could I walk first?" Keiko asked.

"Yes. They'll start in about ten minutes. Let me assist you."

Mary unplugged the IV machine, verified the light was green, then helped Keiko from bed.

"Jonathan, just walk next to her so you can help her if she becomes weak or stumbles."

"Is it OK to put my arm around her?"

"Yes, but you want to avoid skin-to-skin contact."

I did that, and Keiko and I walked slowly from the room and down the corridor. We checked out the common room, and Keiko decided she'd stay in her room, at least for the rest of the day. We returned just as the surgeon and the oncology resident came into the room. They introduced themselves as Doctor Mike Hammond and Doctor Pete Morales. The procedure took about twenty minutes, start to finish, and about ten minutes after that, Mario returned to change the original IV bags and add a third one.

About an hour later, Keiko began feeling slightly nauseated, and her skin began to itch. We pressed the call button, and nurse Peggy came in to check on Keiko and reported that Keiko had a slight fever but otherwise normal vital signs. She pronounced everything OK so far, though I expressed concern because Keiko probably wouldn't feel like eating.

"We want her to try to eat," Peggy said. "We'll provide a very light meal for lunch and give her nausea medication if necessary."

She left, and Keiko and I returned to reading. There were regular checks by the nurses, and when they brought Keiko's lunch, I went to the hospital cafeteria to have my lunch. I ate quickly, then called the house to let Bianca know that Keiko was doing OK so far and that I'd be staying the night. I verified that she, Kristy, and Jack would get everything on the list for the party on Monday, and once she'd confirmed, I ended the call and went back to Keiko's room.

The pattern for the afternoon was nursing checks, some short walks, and reading. Keiko had managed to keep down her light lunch, which was a good thing, though she was feeling progressively worse as the day wore on, which was to be expected.

At dinnertime, the nurse offered to have a meal brought for me, and I accepted so that I could stay with Keiko. I did wonder how it would be paid for, but that was a question I'd ask outside of Keiko's hearing, as I didn't want her to worry about anything more than she already had to worry about. About fifteen minutes before she ate, Keiko was given medication to reduce her nausea, and she managed to eat her meal.

I didn't have any experience with cancer treatment, but it seemed obvious to me that by the end of the week, Keiko was going to be in very bad shape. Of course, the alternative was not doing the treatment, and that outcome was far worse. I realized that might still be the outcome, but at least this way, she had a fighting chance, as opposed to no chance.

The pattern after dinner was similar, with a pair of short walks, though we watched TV rather than read. The lights were turned down at 10:00pm, and I used the pillow and blanket a candy striper had provided to make myself a bed in the recliner, which had to actually be more comfortable than the bed Keiko was in with wires and tubes attached.

May 29, 1983, Chicago, Illinois

"You'll need to wear a mask in the room, starting today," Nurse Kelly said on Sunday morning. "I'll provide a box of surgical masks. Put on a fresh one each time you come into the hospital and after meals."