Chapter 49: The Long Struggle Begins

May 24, 1983, Chicago, Illinois

On Tuesday, I began my new schedule, which created a minor inconvenience for Jack, as he'd have to take the L or UP/North to get to work rather than ride with me. Arriving two hours early didn't change much, though I'd made a second fresh pot of coffee at 7:00am, as I knew Matheson, Monroe, and Foulks expected a fresh pot.

I ate lunch at my desk while doing research, and after double-checking with Mr. Matheson and letting Anna know that I would be in at 5:00am on Wednesday, I left the office at 12:30pm and headed to Rush-Presbyterian Hospital to meet Keiko. Shelly was with her, and at 1:00pm, Keiko and I were invited into Doctor Morrison's office.

"From our previous interactions," he said, "I feel you're both straight shooters and can handle me being direct."

I looked to Keiko, who nodded.

"Just give it to us straight, please," I said. "But in layman's terms."

Doctor Morrison nodded, "Keiko, as soon as we're done here, you'll have a blood transfusion, as we discussed. That will help with your anemia by replacing the red blood cells that your body isn't making as it should. It should reduce your fatigue and make you feel better. Most likely, we'll need to do it again, but we have to balance the benefits with the risks of long-term transfusion therapy.

"The next step will be what's called 'induction chemotherapy', which is a course of intravenous drugs, mainly cytosine arabinoside. It has some potentially serious side effects, the most common of which are nausea, diarrhea, weakness, rash, fever, susceptibility to infections, dry eyes, and hair loss. The treatment takes a week, and you'll be hospitalized during that time.

"In addition to the chemotherapy drugs, you'll receive intensive supportive care, including transfusions of red blood cells and platelets, as well as antibiotics. Because the side effects are so severe, you may be in the hospital for as long as five weeks. The criteria for discharging you are acceptable blood counts and normal bowel function. At around four weeks, we'll do another bone marrow biopsy to see if a complete remission has been achieved."

"I have to stay in the hospital for a month?" she asked.

"It would be nearly impossible for anyone to care for you properly at home."

"OK," she sighed. "Then what?"

"It will depend on the outcome, but the next phase is the consolidation phase, which is a series of regular treatments to eliminate any remaining cancer. It's possible for that to be outpatient, but I can't say at this time because it will depend on the results of the induction phase. The worst-case scenario would be another four to five weeks in the hospital. After that, again, depending on the results, there may be a maintenance phase where very low doses are given for an extended period. That is always done outpatient.

"Now, for the more troubling aspect. I did find some evidence of malformed cells in your spinal fluid. That is not a good sign, but it is treatable. The challenge is that chemotherapy drugs administered by IV cannot address the central nervous system, so we'd need to do intrathecal chemotherapy as well. Given what I've seen, induction should be sufficient to address that, and it's done by a procedure similar to the lumbar puncture you had."

"How does that change the prognosis?" Keiko asked.

"It's not a positive sign, as I said, but young people with this kind of involvement respond very well to chemo."

"Numbers, please," I requested.

"Please understand this is highly speculative, but the five-year survival rate is about 50%. And with this type of cancer, in most cases, that means cured."

"And without treatment?" Keiko asked.

"You'll die," Doctor Morrison said. "I can't say when, as I need to see the progression of your cancer, but a year, eighteen months at the most. You'll be weak, sick, and unable to function for most of that time. With chemo, you'll have a few bad weeks, perhaps as many as six, then be able to go about your life. This is one of those situations where your quality of life would quickly deteriorate and would be as bad, if not worse, than chemo, but with no hope of survival."

"I wasn't considering not having the treatment," Keiko countered, "just comparing life expectancy."

"Pure five-year numbers for your friend — zero with no treatment, 50% with treatment."

"Thank you," I said.

"When would we begin the chemo?" Keiko asked.

"In a few days. That allows the blood we'll give you today to make you stronger. We can put in the IV port today, which will save time, as I understand your friend is taking time off work."

"IV port?" Keiko asked.

"We don't want to have to insert an IV every time we do chemo, so we'll insert something called a Hickman line, which is a central venous catheter. Think of it as a permanent IV but in your upper chest. We'll use what's called a triple-lumen catheter, meaning it has three tubes and a valve that prevents blood from flowing out.

"As I said, you'll be on a continuous IV for a week, with varying chemotherapy drugs and other supportive drugs. On your first day, they'll put in the catheter for the intrathecal treatment, which we can't do in advance. During your treatment, you can read, watch TV, listen to a Walkman, or just relax, or even sleep."

"When do the side effects start?"

"It varies by person, but within twenty-four hours, the first effects can be felt. You'll be monitored constantly and have blood drawn daily, at least."

"Is it possible to start it on Saturday?" Keiko asked. "That way, I can complete my exams."

"I can write that order, yes. Friday would be the soonest, anyway. I'll call and set it up while you receive the transfusion. You'll be receiving packed red cells, and it'll take about an hour from start to finish. Do you have any further questions?"

"Am I able to visit her while she's having her chemo?" I asked.

"Yes, of course, though in order to protect her from infections, we'll have you wear a mask in her room. The visiting hours for chemo patients are very liberal. Keiko, any further questions?"

"Not at the moment. I'm sure I'll have some."

"You have my number, and on Saturday, they'll give you contact information for the chemotherapy staff. There is an experienced nurse available to take calls round-the-clock every day of the year. She'll be able to answer most of your questions and help you with just about anything you need, including putting you in touch with doctors and counselors."

"Keiko," I interjected, "you should get something for Loyola, as you'll need to take your other two exams by Friday, so you don't have to take 'Incomplete' status."

"I can provide you with a healthcare letter," Doctor Williams said. "I've done that for Loyola students before, and the school is very accommodating. Would you like me to do that?"

"I'd appreciate it," Keiko replied.

"Any other questions?"

"Not unless Jonathan has some."

"Not at this time," I said.

"Then, if you'll have a seat in the waiting room, a nurse will call you and set up the transfusion. I'll see you when that's completed, and a surgeon will insert the IV port."

"Surgeon?" Keiko inquired.

"If a scalpel is involved in any way, shape, or form, a surgeon does the procedure per hospital policy. I'll be there, but Doctor Karev will perform the procedure under a local."

"Thank you, Doctor," Keiko said.

"Thank you," I added.

We left his office and went back to the waiting room where Shelly was sitting.

"Done?" she asked.

"No," Keiko replied, "that was just the information meeting. A nurse will call me for the transfusion."

"Did you find out about chemo?"

"Yes," Keiko replied, then explained what we knew so far.

About ten minutes later, a nurse called Keiko, so she and I got up, then followed the nurse to a treatment room. Keiko's vitals were checked, then the nurse set up the IV, inserted the needle into Keiko's arm, injected saline, then put a bag of red blood cells on the hook and connected it to the IV line. She waited about five minutes to monitor the IV, and once she was satisfied, she left Keiko and me in the room.

"How are you feeling?" I asked. "I mean mentally and emotionally?"

"Not too hot, as I'm sure you can imagine."

"Yes and no," I replied. "I mean, I know you're under tremendous stress, but I've never been in a situation even remotely like this one. I think I'm going to postpone the trip to Saint Martin because if I understand Doctor Morrison correctly, you're not going to be in any shape to go, and I don't want to go without you."

"It's OK if you want to go, Jonathan."

"I understand, but let's focus on you, please. Do you think you'll be able to take your exams on Friday?"

"I think so. I had my history final this morning, and I'm positive I did well. I have my political science final scheduled for Thursday, and I've finished my paper for English. That leaves French and Principles of Finance, both of which I'm ready for. As soon as we're done here, I'll call my advisor and let her know we'll drop off the letter on our way home and ask her to speak to my professors."

"OK. I plan to come see you every day, if you're up to it. You need to let me know what needs to be done while you're in the hospital. Whatever you need, I'll either do or arrange to be done."

"I feel as if I'm a burden to you."

"Except for asking me to be with you at your appointments, you haven't asked me for a thing! I'm doing these things because I want to do them because I care for you."

"Thank you," she said with a smile. "Will you promise me one thing?"

"If it's in my power to do so, yes."

Keiko laughed softly, "And this is where I tease you and ask for an engagement ring!"

"You know that's not out of the question, right?"

"Let's not do anything foolish simply because we've encountered an unforeseen situation. What I was going to ask you to promise is to not give up your life completely. You need to see your friends, including Jack, Bev, and Violet, and people like Jeri and Marcia, who you need for your career. Promise, please."

"I promise, though I reserve the right to decide the proper balance of time."

"Which is like making no promise at all! I know how precise you are with your agreements and promises! Make a real promise, please."

"I promise not to completely neglect my friends and associates. That means, by the way, going to dinner tonight at Jeri's."

"And bringing Allyson home?" Keiko asked with a sly smile.

"Does that bother you? Serious answer, please."

"My opinion hasn't changed — until we agree to a shared future, I don't have a problem with it. And, all teasing aside until you and Bianca decide it's time to have a baby, something I agreed to, you can't be monogamous. I know I could make an exception, but making an exception seems like a very bad idea, even though I trust you to keep your word. I also heard from Ellie that she's planning an end-of-the-semester party, which I suspect you want to attend."

"Not if it hurts you," I replied. "And timing with Bianca might change, too, given she's very likely to go to work for Spurgeon full-time in a few weeks."

"Deanna mentioned that this morning. Ellie is going to be positively green with envy!"

"Ellie should finish her degree," I replied. "Computers are a special circumstance at the moment, and there are plenty of jobs for people even without a degree. Bianca is going to continue working on her degree, and there are good fallbacks for her if she needs them. Ellie wants to become licensed, and that's a different situation altogether. Her risk profile and mine are very, very different."

"Did you know she's dating?"

"Yes, which is why she wasn't at the house on Saturday evening. She and I never clicked the way you and I have."

"And you and Bianca and Deanna."

"Bianca likes girls too much to enter into a traditional relationship, and even though I've considered what she's suggested, I still think a traditional family situation suits me better. Deanna wants a patron, and sex is part of the deal in her mind. I can be her patron without that, and she'll find another guy, perhaps even fall in love."

Keiko laughed softly, "She loves you, Jonathan, and so does Bianca. And so do I."

"Well," I said with a silly grin, "you could always sign up for Bianca's plan!"

Keiko smiled, "Ellie actually said she'd sign up for that!"

"She made that clear, but you won't, so it doesn't matter. May I say something without you freaking out?"

"You're asking the girl who was just diagnosed with cancer and told she has a 50/50 chance of being alive in five years if she'll 'freak out' over something about our relationship?"

"Point taken," I replied. "I don't want to lose you, and if that means telling Bianca I can't fulfill her wishes, I will. I've made mistakes in that way before, and I'm completely serious when I say I'll marry you right away if that's what you want."

"What I want is for you to help me get through this. Don't change anything until we know more. At work, would you even consider betting literally everything on a 50/50 chance without hedging your bets?"

"No," I admitted.

"Then don't do that in life. That said, if you ask, I'll say 'yes'. I just prefer you don't ask until we know more. OK?"

"OK."

"And that means you keep your date with Allyson tonight."

"Actually, we just play it by ear," I replied.

Keiko rolled her eyes, "And yet, you both know that's what you want and therefore, it'll happen."

"True."

"Seriously, Jonathan. Keep living your life, see what happens, think it through, and ask if it's truly what's best for you."

"A Shinto wedding?" I asked.

"My grandfather would be beside himself with joy. Would you do that?"

"So long as it didn't involve any promises similar to what my Catholic friends have said, sure."

"No. As we discussed, honoring the «kami» is sufficient, and the way you put it would pass muster with any Buddhist monk or Shinto priest. It's very different from the typical Christian view. But that's a bridge we'll cross in the future if we come to it."

"May I make a suggestion?" I inquired.

"Yes, of course."

"We both know the possible outcomes, and I think it's better to focus on the positive and act as if that is what will happen until there is incontrovertible proof that it won't."

Keiko laughed softly, "That is such a Jonathan thing to say! Most people would say 'focus on the positive' and leave it at that."

I nodded, "I can only be me."

The nurse came in to check Keiko's vitals, including her temperature.

"May I ask what you're concerned about?" I inquired.

"Mainly hemolysis or an allergic reaction," the nurse said. "Both are reactions of your body to foreign blood. Blood typing and cross-matching prevent most of those types of reactions, but not all. So long as Keiko doesn't spike a fever or show significant changes in her breathing or blood pressure, there's nothing to worry about. The doctor will go over this when he comes in, but she should check her temperature a few times a day for the next week, as a fever is the first sign of a delayed reaction."

We'd need to get a thermometer, as I didn't have one in the house and doubted anyone else did. I made a mental note to stop at Osco on the way home for one. The nurse was satisfied with Keiko's vital signs and left the room.

"When the doctor spoke to you about the transfusion," I asked, "did he say how long it would take for you to feel better?"

"He said things would start improving right away," Keiko replied. "I actually feel as if I have a bit more energy even after twenty minutes. Did you get enough sleep last night?"

"I'll be OK," I said. "I can make it on very little sleep if necessary."

"You have to take care of yourself, or you won't be in any state to care for me."

"I will, and I'm positive Bianca will be on my case if I don't. I know we have time, but I should plan for you to come home and figure out what we need. I was thinking an intercom system. I saw in the Trib that RadioShack has one that has four units that we could spread around the house. That way, if you have trouble negotiating the stairs, you can use the intercom to call one of us. We also should check on what medical supplies we might need."

"A box of airline barf bags?" Keiko said with a smile.

"I wonder if Osco has something like that? Or we can ask Doctor Morrison. In the worst case, a bucket. We should also ask about food restrictions. I'm going to guess spicy food will be out of the question even after you come home."

"I don't think wasabi will be on the menu, that's for sure!"

"What's wasabi?"

"I've heard it called Japanese horseradish, but it's not the same as what we have in the US. It's really hard to find in the US, except in specialty stores and restaurants in San Francisco. It's used in sushi and also as a way to spice roasted nuts."

"Except at your grandparents' house, I don't believe I've had Japanese food, and what they served was soup, rice, fish, and vegetables."

"That's a very typical Japanese meal. In fact, a Japanese breakfast would consist of basically those things, rather than the Western breakfasts we eat."

"What about your parents?"

"A mix. Mom prefers Japanese food, but Dad loves hamburgers, pizza, and other typical food. When he was in High School, he mostly preferred to eat the way his friends did. My mom has pushed him back to more Japanese foods, but he likes his beef on the grill as much as you and your friends do!"