As Jim stepped into the crisp autumn day after his annual physical, a feeling of relief washed over him–another year of good health. He slipped behind the steering wheel and motored back to work, letting the small slice of doubt that had wiggled into his consciousness before the exam evaporate. It was a beautiful day in Columbia, SC and once work was over, he, his wife, and her boss were meeting friends for dinner in Greenville, one hour west of the capital.
Two hours later his feeling of well-being deteriorated with one phone call. Jim squinted at the readout on his cell phone. Dr. Mott’s number appeared on the screen.
“Mr. Turner?” Mott’s nurse said.
“Your complete blood count (CBC) was abnormal. Dr. Mott would like to repeat it at your convenience.”
Although a rush of anxiety tightened his shoulders, Jim suppressed it. Somebody in the lab made a mistake. According to his wife, a registered nurse, mistakes happened more than the public realized. Besides, the office nurse said he could return at his convenience. It wasn’t like it was an emergency.
Not one to put things off, Jim agreed to return to the office within the hour. On the return trip to his physician’s office, he called his wife.
“Dr. Mott’s office called. They said my WBCs and platelets were high and my hemoglobin is low. What’s that mean–anything to worry about?” Jim asked.
After a slight pause, Becke said, “I’d feel better if it were normal. What were the values?”
“She just said, ‘high.’’
“Get a copy of the CBC.”
Jim maintained calm as he closed his cell. It was probably nothing and the second test would confirm it. At the office the blood draw proceeded as usual and within ten minutes Jim was on his way back to work–one minor inconvenience addressed.
When the doctor’s office called him an hour later, the touch of concern he had suffered increased. The repeat CBC confirmed the first abnormal results. Worse, the second values were more abnormal than the first. After a brief conversation with his wife, Becke, he asked his doctor to fax the results to her. Becke worked for Elaine, a pathologist—lab values were her specialty.
By the time the threesome met for the drive to Greenville, they had reviewed the repeat blood work, but needed the results of the blood smear in order to pinpoint a potential cause for the abnormality. Becke was worried and that worried Jim. By nature he wasn’t a worrier, but neither was his wife. When she was worried, especially when it came to medicine, he guessed there was a valid reason.
Jim drove as Becke and Elaine discussed possible reasons for an abnormal CBC. The word “leukemia” came up a few times. Jim wasn’t sure what that meant. According to Elaine, his counts were high, but nothing like she had seen in the lab.
“It could be one of the chronic leukemias. If so, they are treatable and can cook for a long time before presenting a problem,” she said.
Jim continued to drive. He still didn’t understand if he had something to worry about so for now, he was going to forget about it—if possible.
Although they had a pleasant evening, Jim’s health issue remained in the back of his mind. It wasn’t a big concern, but he couldn’t quite forget about it. The next day he contacted his internist for the results of the blood smear and was informed it could take up to two weeks for the results. In addition to the current pending test, they wanted to perform another blood test to check if his iron levels were normal. Before he had a chance to email his wife about the new developments, his physician’s office called him again and said an additional blood test wasn’t necessary because they already had his iron levels.
Now he was really confused. Jim called Becke and gave her the latest scoop.
“That’s ridiculous. You don’t wait two weeks for a blood smear. I’ll go talk to Elaine and get back with you.”
Within fifteen minutes Becke fired an email to him. Elaine was angry because she thought the lab had made two possible mistakes: they might have mislabeled the specimen, and they had delayed the smear results. Although Elaine no longer practiced clinical pathology, she understood a lab would expedite a blood smear following an abnormal CBC result to within twenty-four hours. Labs followed this unwritten rule because if the results indicated leukemia, physicians wanted to initiate treatment as soon as possible.
Tension mounted in the Turner household, but they agreed to wait until they received the smear results before acting. Becke and Jim talked about the possible diagnoses and struggled to keep apprehension to a minimum.
However, when Dr. Mott’s office called to schedule an appointment to discuss the findings a week later, Jim could no longer blow off the abnormal tests. He knew the unwritten medical code. If the physician called you with test results, it was no big deal. If they scheduled an appointment, worry. Something was going on inside his body. Jim immediately notified Becke after the call from Dr. Mott.
“It can’t be good, if he wants me to come to the office,” Jim said.
“I think it’s time to fire him.”
“Don’t you think we should give him a chance to tell us what he thinks?”
Becke didn’t hesitate. “I would have fired him after the nurse gave you a hard time about getting the results. You’re more patient than I am.”
“He’s done okay for the past five years.”
“You’ve been healthy for the past five years. Everybody’s a good doc as long as nothing’s wrong,” Becke said.
“So what do you want to do?”
“I’m going to compile a list of questions. If we’re comfortable with his answers, we’ll give him a little longer. If we don’t like what he says, I think we should call Dr. Patel. Hematology/oncology is his specialty.”
Jim really didn’t want to change doctors. “Maybe we won’t need him.”
“That would be a good thing.”
“I’ll pick you up at 3:00pm.”
Twenty minutes later, they arrived at the well maintained brick entrance to Mott’s office. Inside, only a few patients waited for appointments. Becke selected a seat by the large front window and after signing in, Jim joined her. The warm sunshine felt good on his shoulders, but he couldn’t shake the hint of fear creeping along his spine.
Although they had talked at length about the possible outcomes of the upcoming conversation, talk was cheap. Reality was an entirely different ballgame.
“Try to stay cool,” he coached Becke as the nurse called his name. His wife had a short fuse and no patience for shoddy medicine, especially when it involved her loved ones.
The meeting with Dr. Mott was uneventful and the physician showed no outward signs of irritation by the list of questions. He appeared open and honest and Becke kept a lid on her interrogation style. According to Mott, an iron deficiency anemia had caused his blood counts to go whacky. Mott planned to refer him to a GI specialist to identify the source of the suspected bleed and fix it.
Jim understood where this was going. He’d suffered an ulcer before and was currently taking a drug that could damage the lining of his stomach. Becke’s next question confirmed he was on the right track. As soon as Mott answered, she moved to the big question.
“Do you suspect a blood dyscrasia could cause the anemia?” she said.
Jim held his breath. A blood dyscrasia was code for leukemia.
Although Becke had asked the question, Mott turned to him. “I don’t think you have leukemia. I’m going to refer you to a gastroenterologist for an upper GI series. If that’s negative, we might want to consider a hematology consult.”
As they left the office, Jim thought the plan was in place. Although concern still jabbed at his consciousness, he felt sure Mobic, the drug he took for his knee, had caused the problem. He wasn’t enthusiastic about an upper GI, but a minor procedure beat leukemia. Once they confirmed he had an ulcer, he would stop taking the Mobic and life would return to normal.
All in all, it was a good plan if he hadn’t been married to Becke. She seemed satisfied with Mott’s answers until the next day as they prepared to leave for work.
Becke stepped into the garage. “I’ve been thinking about Mott’s answers and I’m worried.”
“I thought he answered your questions.”
“He did, but I don’t like what he said. It’s not lining up right. I think we just want to hear that it’s nothing,” Becke said as she slid into the leather seat.
Jim started the engine. “So what’s wrong with his plan?”
“First, you’re asymptomatic: no pain, no blood in the occult stool, nothing. Second, if he suspects a bleed, why didn’t he stop the Mobic? Finally, it’s backward. Why put you through an invasive GI workup before he refers you to a hematologist?”
Jim turned the car onto the highway. “I can stop taking Mobic. My knee will just ache more.”
“What do you think if I send Patel an email and ask his opinion?”
“He’ll be ok with that?”
“I think so. If he’s not, he can say, ‘no.’”
The muscles tightened in the back of Jim’s neck. Becke and Elaine had planned to attend Dr. Patel’s Celebration of Life scheduled for Thursday evening. As the medical staff for the state Medicare carrier, their attendance was work related. Jim’s preference had always been small groups of friends and he avoided large gatherings when possible. He’d only agreed to go when Elaine had a conflict and had to cancel. Becke had vetoed his suggestion to drop her off at the event and pick her up when she was ready to go home.
A car passed him in the left-hand lane and he glanced at Becke in the seat beside him. Her focus remained steady on the Interstate in front of them. However, after thirty years of marriage, he understood at lot about his wife. Although she was quiet on the outside, she wasn’t necessarily calm on the inside. He could almost feel the wheels of her mind turning. Besides, she wasn’t going to let it go until she’d talked to Dr. Patel.
Jim released a slow breath as his resistance eased. If he agreed, Becke would feel better about his care. Besides, it was just an email. He’d draw the line if she wanted to discuss his health during Patel’s festivities.
Jim stopped the car at the rear entrance to Becke’s work. Once she stepped inside the building, he traveled to the main road for the five mile drive between her office and his. As the early morning shadows whizzed by his window, health questions pounded his mind. The thing with Dr. Patel bothered him. He didn’t like intruding on Becke’s work colleagues during their down time. Besides, a few weeks wait for the GI guy to schedule and perform the endoscopy wouldn’t hurt anything.
Too bad his wife wasn’t on the same pace as he was. Becke didn’t wait to ask Dr. Patel about the findings. Within an hour, she had emailed the oncologist and then sent another email to Jim. She had already arranged for Dr. Patel to see Jim during the evening celebration scheduled the following day. Jim had two choices: go along or try to talk her out of it. He dialed her office number.
“I don’t feel comfortable interrupting his party,” Jim argued.
“You need to meet him. Even if this is nothing, you never know when someone in the family will need an oncologist,” she insisted.
“That’s fine, but I don’t think we should interrupt his festivities for my health issues.”
“He’s already said it’s ok. Just meet him and talk to him”
Although Jim was uncomfortable with the plan, he caved in to her request. He had almost convinced himself it was okay to attend the party until he stopped the car in the driveway of Carolina Blood and Cancer. The lights from the office illuminated the early evening and the vehicles filled the adjacent parking lot to capacity. The party was in full swing. He already felt like an interloper. Now, he was an interloper in a big crowd of people he’d never met. Worse, this was a celebration for people who had serious and terminal illnesses. It was their night, not his.
In spite of his reservations, he accompanied Becke inside and Dr. Patel dressed in a black polo with the practice logo on the pocket greeted them. Within minutes one of the office technicians led him to a small examining room to draw his blood. He felt guilty that she had to work when everyone else was eating and talking. Although she was pleasant and didn’t seem to mind the interruption, he was grateful the procedure only took a few minutes.
After she had applied a small band-aid, he left the room and followed his wife’s lead through the crowded hall. He identified some of the patients based on the brightly colored scarves covering the hair loss. However most of the time, he couldn’t distinguish between patients and family members. In addition to patients and families, community leaders and practice friends had joined the gathering. It wasn’t a somber group. Smiles and hugs seemed to be in ready supply. Based on the festive environment, Celebration of Life seemed to be a good name for the event.
Too bad he couldn’t enjoy it. Although the practice physicians and their patients were friendly and the main dish was one of his favorites, he still couldn’t shake the feeling that he was an intruder. Beside him, Becke moved through the office to the food line. Jim pasted a smile on his face and filled his plate with the grilled Mexican fare.
As he picked up a beverage, he noted that glass windows comprised the entire back side of the office. He joined his wife under the golden dome built to provide a peaceful alternative location to receive chemotherapy and meditate.
“It’s not like the usual office,” Jim said as he loaded his taco.
“I told you they were different. Patients are the primary concern in this practice.”
“That’s pretty sad to think patients aren’t the primary concern with all doctors.”
Becke waved at someone Jim didn’t recognize. “Physicians are no different than the rest of the population. You have good ones and bad ones. I worry about patients who don’t have a network to differentiate the two groups. Can you imagine having cancer and being forced to make a selection without knowing the physicians?”
Since his mouth was full, Jim shook his head. If he wasn’t married to Becke, he’d be one of those patients.
When Jim pitched his plate into the waste receptacle, Dr. Patel caught up with them. He opened the door to a treatment room. “Do you mind if I examine you?”
Jim entered the examining room. This had to be a first-a doctor asking a patient’s permission to examine him.
After a brief examination to check for an enlarged spleen, Dr. Patel invited Becke into the room and discussed possible reasons for the changes in his blood work.
“It could be the result of a GI bleed or it could be Myelodyplastic Syndrome (MDS),” Patel said.
Jim scowled. That was a new one. He hadn’t heard Elaine or Becke mention it. “What’s that mean?”
“It means there’s a problem with making new blood cells, but we have been very successful treating it with a pill.”
Jim checked his wife’s expression and then Patel’s. Both seem relaxed so he tried to ease the tension in his neck and shoulders. Had this been a big concern about nothing? “When will we know?” Jim said.
“I’ll call you tomorrow as soon as I receive the results.”
The minute he drove onto the main road, Becke said, “Are you glad you went now?”
“Yes, but I still think it wasn’t right to invade the party.”
“Do you see the difference between your internist and Dr. Patel’s group?”
Jim chuckled. “No contest. Dr. Patel’s like Elaine. He doesn’t act any different than the rest of us.”
“There shouldn’t be a “them and us” in medicine. It’s supposed to be a partnership. You have to be able to talk with your physician, not talk up to him.”
The following day Jim actually felt rested. Maybe the rollercoaster ride he’d climbed aboard was finally rolling to a stop. Thus far, he hadn’t allowed his health issues to interfere with his work—if one didn’t count the numerous doctor appointments. On the outside, he looked the same. Besides fatigue, he felt the same. So did he really have something going on inside him?
Dr. Patel’s call came to Becke in the afternoon. She called Jim after she’d spoken to Patel.
“Dr. Patel wanted to ensure he was correct so all of his colleagues reviewed the results.”
“It’s not a reaction to a GI bleed. They think you have MDS. Patel wants you to come to his office for a series of tests for a definitive diagnosis,” Becke said.
He detected the worry in the tone of her voice. His heart rate accelerated. “When?”
“He’ll see you whenever we can make arrangements to go to his office.”
Jim didn’t hesitate. If he had something bad, he wanted to know about it. “I’ll need to ask off. Do you have anything going this afternoon?”
Becke didn’t hesitate. “Elaine said to do whatever we need to do.”
“We can be there by one, if it’s ok with Dr. Patel.”
Fall had settled in South Carolina and the trees responded to the decrease in temperature and shorter days by turning on their multicolored leaf show. Jim turned into the drive of Becke’s workplace past bright patches of red and yellow foliage. As usual she was waiting.
As soon as she settled into the seat beside him, Becke said, “I looked up MDS.”
“It seems to be a precursor to leukemia.”
“I thought Patel said you can treat it with a pill I would need to take for the rest of my life.”
“That’s what I thought he said. Now, I’m not sure. I don’t know if this is the same disease he was talking about last night or something different.”
Jim merged onto 77 toward Rock Hill and Charlotte. “I guess we’ll just have to ask him.”
Becke pulled a pad from her large tote to take notes. “Did you call Mott for the referral?”
“Yep. The nurse was kind of snotty. She questioned why I was going to a hematologist before the GI consult.”
“Tough. They’ve made enough mistakes. There’s no way anyone could have read your smear as normal. They got your specimen confused with someone else or they flat didn’t read it. Elaine worried about that when they changed their minds about the Iron results.”
“Patel didn’t have trouble looking at it last night.”
“Neither did I and last night is the first time I’ve looked at a blood smear. Now, I know why Elaine was so suspicious.”
“Easy to interpret?”
“If I could do it with no training, anyone should be able to read it.”
“So it was a mess up in the lab. Dr. Mott uses an outside lab for his tests.”
“Elaine says they double check when they get an out-of-sync result. With your CBC results, they should have double checked the smear, but the office wouldn’t know that.”
“It doesn’t matter now.”
Jim’s words echoed in his mind. What did it mean? Would he take a pill for the rest of his life or was something else going on? It seemed strange to walk around with something wrong with you and you don’t know what it is.
Inside Patel’s waiting room questions continued to flow in and out of Jim’s mind with the soft swish of the salt water fish tank humming in the corner. Although a flat-panel TV displayed local news, Jim picked up a magazine and flipped through the pages without seeing a word.
Within minutes of his arrival, the office nurse called his name. In the hallway the nurse weighed and recorded his weight and then led Jim and his wife to the examination room. Dr. Patel joined them as soon as the nurse drew a blood specimen.
After a brief greeting and review of the facts, Dr. Patel said, “I find my patients are more stressed by the unknown than they are with the final diagnosis. We don’t want delays. We need to know the problem so we can get the right treatment as soon as possible.”
“I’m for that. We’ve been up and down with the different tests,” Jim said.
“If it’s all right, I would like to do a bone marrow biopsy and the cytogenetic testing today. If I send it in right away, we should get the results before Thanksgiving so you can enjoy your holiday,” Patel explained.
Jim blinked. Okay, that was fast. He liked the way this doc’s mind worked. Jim wasn’t a procrastinator. If something needed to be done, get it over with so he could move on. The additional blood tests were nothing new other than he was starting to feel like a pin cushion.
Dr. Patel explained what a bone marrow biopsy involved. To Jim, it didn’t sound like a big deal. He liked the fact that he wouldn’t need anesthesia and Patel could perform it in the office. The actual procedure proved to be a little more involved than he anticipated.
Jim turned onto his side and Dr. Patel numbed his hip before inserting the instrument.
“Sorry, does that hurt?” Dr. Patel said with a grunt.
“No, I just feel you pushing on me.”
“You’ve got hard bones and I need to get a deep enough specimen for the lab.”
Jim waited as Patel continued to push. A faint crunching sound came from behind him and Jim wondered if that was the crunch of his bones.
“Okay,” Patel said.
Jim swung his feet off the table to a sitting position. It wasn’t that the biopsy hurt, but he was glad to get the procedure complete.
Dr. Patel had a smile on his face as he held up the plastic bottle with the pink tinged core in it. To Jim, it looked like the inside of a strawberry his wife pushed out of with a straw, except this one had something hidden inside it-something that could change the rest of his life.
On the ride home Becke said, “When we were sitting in the waiting room, I kept looking at the other people waiting to be seen. They have a story like we do—they got a call about abnormal results and their life changed.”
“It definitely changes the way you look at life.”
“We better tell the kids what’s going on.”
Jim frowned. “There’s not much to tell. If I have MDS, I take a pill for the rest of my life.”
“You still need to let them know. They’ll be mad if something’s going on and we kept it from them.”
He hated to tell them before they had something definitive. No sense in the whole family climbing on the roller coaster. “At least the bone marrow biopsy is behind me.”
“You still have the GI workup so they can find the bleed.”
“I’m not looking forward to it. But if I have to have one, I’m ready to get it over with.”
“Do you want me to go with you?”
“No, it’s just an office visit. No sense in taking off work when you don’t have to.”
When they arrived in Columbia that night, Jim called his son and his daughter and gave them a heads-up about his condition. His son was noncommittal, but he was also a Marine. Jim thought the military gave a man a different outlook on life. Biology was his daughter’s major and she bombarded him with questions.
After the conversation ended, he replayed the two very different conversations. Was ignorance bliss? His wife and his daughter had medical training and worried about the “what-ifs” of his condition. To Jim, life was too short to worry until you had something to worry about. When your doctor diagnoses you with cancer like his late friend Werner, then you worry.
When he got the call the next day, he didn’t start to worry. He didn’t start anything. His mind hit the wall after his wife called with the diagnosis. He knew it wasn’t good by the tone of her voice.
“I just talked to Patel. Are you in a place to hear this?” she said.
Jim swallowed. “Go ahead.”
“You have leukemia—atypical chronic myelogenous leukemia,” Becke’s voice broke with emotion.
Since she didn’t sound like she was in a position to talk and he wasn’t a whole lot better off, they agreed to leave work and meet at the Starbucks located in the Vista. Although Jim turned the key and drove the car, he wasn’t really aware of his surroundings. Scenes of the end of life spun through his mind. Would he be here for this occasion? What would happen if…?
Becke pulled into the adjacent parking space a few moments after he did. She’d been crying, but he felt dried up. He didn’t feel overly emotional. Yes, he felt shocked, stunned, pulverized, all the usual things. But none of those emotions left him tearful. What he really wanted was information—all of it.
He placed his arm around her shoulders and they walked to the entrance. The University of South Carolina campus occupied a major portion of the heart of Columbia. With its gas light replicas, brick side streets, and wide sidewalks, the Vista was a common haunt for University students. The coffee chain had renovated a large corner building and its wood panel floors, high ceilings, and comfy chairs created a relaxed atmosphere for study partners, dates, and bad-news discussions.
After they placed an order and settled into red velour chairs on the lower level, Jim started asking questions. Becke couldn’t answer all of them, but she was good at making lists. They agreed to compile everything they needed to know and ask Patel.
“Dr. Patel offered to drive here to talk to us if we needed him,” Becke said.
“He doesn’t need to do that. Besides I need a little time to let this soak in.”
After an hour Jim felt comfortable with his list, but after that his comfort level tanked. He blinked at the people walking on the street outside the restaurant window. A few hours ago, he’d been one of those people-moving through life as if he would live forever. That had changed. His world had shifted between the morning and the afternoon.
What had he been doing for the last five years? Jim sipped his brew-so much for hoarding for retirement. Depending on the outcome of a few tests, he might not need a retirement fund.
Jim drained his cup and stood. “It’s almost time to meet Lori.”
Life moves on, echoed in his mind as he drove to the Honda dealer to pick up his daughter. Simple things like paying a car repair bill no longer seemed to matter. At least he could fix the car. Too bad he couldn’t fix his body.
He thought he had cocooned his emotions about his diagnosis until he saw Lori.
“Did you hear about the tests?” she asked.
“I have leukemia,” he said as he hugged her to his chest.
He hated crying like a baby in the Honda parking lot. He hated feeling sorry for himself. He hated that he might not be around to help his daughter when she needed him. After a few minutes he regained his control and released Lori.
“Does Ethan know?” Lori asked.
The embarrassment eased as he wiped his eyes. “I’ll call him in a few minutes.”
Jim slipped behind the wheel of his car. He’d just started the end of his life.
His son’s deep voice filled the cell phone. “So what’d they tell you?”
“I have leukemia.”
“How long have you got?”
The question didn’t bother Jim. For some reason Ethan’s more abrupt manner was easier than Lori’s more gentle approach. “It depends on if I respond to the drugs– two to five years if I don’t.”
“That sucks,” Ethan said.
After Ethan had the facts, they ended the call. Jim took a cleansing breath. The hard part was over. He’d still have to talk to his brother and sister, but the immediate family was informed. He changed lanes as he traveled through the evening traffic. He couldn’t tell how the news had affected his son. Somewhere along the line, Ethan had learned to hide his emotions. Was that one of his legacies or had Ethan learned that in the Marines?
Sleep that night was out of the question so he slipped out of bed and walked to his home office. If he couldn’t sleep, there was no way he could fix computer programs. The computer screen blinked blue in the darkened house. He also needed to let his boss know why he wouldn’t be in and why he might miss work in the future.
Jim had never felt comfortable with words, so he struggled with the long email. Forty-five minutes later he pressed the send key. Tomorrow, he would need to tell his siblings, Kathy and Walt. He’d deal with that in the morning. Right now he had to come to grips with the gravity of the situation.
He was only fifty-five years old. A late bloomer, he hadn’t finished his undergrad program until his mid-thirties, so once he’d developed a career path in computer technology, he had hustled to play catch up. Catch-up? What a laugh. Catch up to what? He’d saved and postponed travel so he could retire. Now, he didn’t know if he’d live to retire?
He slipped between the cool sheets and stretched. Becke moved beside him and he gave her a hug.
“I think we need to start enjoying our lives,” she said.
“I know. I don’t want to wallow in self-pity. We may not have a lot of time left, but how do you enjoy it when you’re thinking about the end?”
“It’s no different than getting hit by a car. At least with cancer, you know the end is coming and can plan for it.” Jim wondered if he was trying to ease his wife’s fears or his own.
“I’m feeling sorry for myself because I may be a widow. I could still die before you.”
“I’ve always known the odds were in favor of me being a widow.”
As he verbalized his fears, the tension inside shifted. “I always worried about lung cancer because I smoked for so long. Do people get two kinds of cancer?”
“Solid tumors metastasize, but I can’t remember a case of a solid tumor and a blood cancer. I’ll write it down so we can ask Patel.”
Jim gazed at the ceiling fan spinning above the bed. “It still seems unbelievable. One minute I’m healthy and the next I may have only five years.”
“Do you realize how fast five years goes by? It’s like yesterday.”
“I know,” he said as a vacuum seemed to swallow him.
After a night of fitful sleep, sunlight didn’t bring a lift in his spirits. He felt like such a wuss. A word, a picture, a commercial, or an aberrant thought caused him to weep. His appointment with Dr. Patel was scheduled for the afternoon. Jim checked the time. 10:00am.
“It’s a beautiful day. Do you want to go for a walk?” Becke said.
Jim nodded. They needed something to help them get through this. Hand in hand they navigated the asphalt streets of the neighborhood and the rural area that surrounded it. With each step Jim wondered how long he had to feel good. Would he slowly feel more and more tired? The neighborhood hill taken at a good clip could leave him short of breath. Would it get worse?
“I want to know the worst scenario,” Jim said as they walked under a canopy of trees.
“I’ll start a list. Lori wants Dr. Patel to answer questions for her too.”
“You know I watched you sleeping beside me this morning and I wondered how many mornings like that I would have.”
Becke squeezed his hand. “You can’t think that way. We have to enjoy every moment. I resent having to work. I resent the mundane things about our lives that prevent us from being together.”
“I guess we could liquidate and go as fast as we can until the money runs out.”
He felt her gaze on him. “Do you mean that?”
“Part of me does. The other part wants to make as much as I can so you and the kids will have a better life.”
On the ride to Patel’s Lancaster office, Jim drove and Becke compiled another list of questions to ask. Time seemed to be running at warp speed. Although he drove the speed limit, by the time they agreed the question list was complete, Jim wheeled into the office parking lot. They only waited a few minutes before Dr. Patel escorted them to his office.
Jim extended his arm so the technician could draw a blood sample. How in the world could his body recover from anemia if they kept taking it out?
Becke retrieved the list from her purse and unfolded the paper. “We made another list so we wouldn’t forget our questions.”
“You know you can call me at any time. You don’t have to wait for an appointment,” Dr. Patel said.
“Even a doctor should get some personal time away from work,” Jim said as the technician wrapped a brightly colored bandage around his arm.
“You said Jim has Atypical CML. I interpret “atypical” as a wild card. It could work for us or against it,” Becke started.
Dr. Patel nodded. “I agree. I ordered tests to see if we need additional medication to control the platelets.”
Jim tried to relax in the formed plastic chair. When the medical roller coaster started, he didn’t understand the jargon. That had changed and even if he didn’t know the exact science, he understood the gist of the conversation. Atypical was not a good thing.
“I also have questions from our daughter Lori,” Becke said.
Patel smiled patiently. “Give her my cell phone. Anytime she has a question, she can call me.”
After Patel finished answering Becke’s questions, Jim said, “I’m scheduled for the endoscopy in three weeks. I told my GI doc about the CML and he didn’t say anything.”
Becke added. “He didn’t even discontinue the Mobic. If they think Mobic caused the GI bleed, why didn’t they tell him to stop taking it? We know he shouldn’t take it, but what if we didn’t know?”
“If you aren’t comfortable with the GI consultant, I can refer you to my friend. He’s very good. All of the doctors use him for endoscopies. You met him at the event last week.”
Becke turned to Jim. When she gave him that look, he knew what was on her mind. She wanted to use Dr. Patel’s friend. She didn’t like the way the GI doc was handling his case and he didn’t want her to worry. Besides, when she worried, he worried. Bottom line: get the procedure behind him.
He shrugged, “Okay with me.”
Jim blinked. He must have said the magic word. Within five minutes he had an appointment with Dr. Amin. More amazing, the appointment wasn’t scheduled for a future date. Dr. Amin agreed to see Jim as soon as he came to the office. Not only was his cancer encounter a rollercoaster of emotions, the ride moved at top speed. Within two hours, Jim had seen Dr. Amin, and was scheduled for an endoscopy two days later.
On the drive home Becke flipped through the notes she had taken during every appointment. “What do you think?”
“I’m just ready to get it over with. We need to cancel my appointments with my Columbia doctors.”
Becke picked up her cell. “It’s not five yet. They should still be in the office.”
As Jim drove, Becke entered the office number of his internist into the small cell and handed it to him. Jim rehearsed his response as the line rung. Although it was ten minutes prior to closing, the office answering machine played the message.
The moment the beep sounded, Jim didn’t hesitate. “This is Jim Turner. I want to cancel my appointment for December 5. My hematologist has diagnosed me with CML and he’ll take over my care. If you have questions, you can reach me at this number.”
After he had closed the cell, Becke said, “Do you think he’ll call you back?”
“I hope so. Don’t you think he would want to know what’s going on?”
“I don’t know.”
“Wow. That’s sad to think he wouldn’t want to know about his patients. I’ve been going to him for five years.”
“What’s he going to say?”
Jim hesitated. “I don’t know. He needs to know the lab service he relies on has problems.”
“Docs are afraid.”
“You mean that I’ll sue.”
Becke shrugged. “Everybody wants something for nothing. You don’t have a case anyway. His negligence is in the delayed diagnosis.”
He glanced her way. “If you hadn’t talked me into seeing Patel, I still wouldn’t have a diagnosis.”
“By the time Mott would have referred you to a hematologist, you could have a response to the Gleevec.”
That was another issue. Not only did he have a serious disease. He now had serious medical expenses. “How much do you think the drug will cost?”
“I don’t know. Some of the drugs are ridiculous.”
“Will Blue Cross cover it?”
“I think they cover our drugs except for a10% copay, but we need to check.”
Tension squeezed Jim’s stomach. “This is crazy. I have cancer and I’m worrying about how much the drugs will cost.”
“Now you know why the country is in a health care crisis.”
Tiny pinpoints of starlight filled the evening sky as Jim drove into the garage. They had talked enough. Now they needed information. Without additional discussion, they made a beeline to their home office located on the second floor of their home. Although the converted bedroom measured a little over ten feet by ten feet, it housed two desks outfitted with dual computers and separated by a table with fax and printer.
At her desktop Becke Googled one request while Jim researched another. Within minutes they had preliminary information. Gleevec cost approximately twenty-four hundred dollars a month and Jim’s insurance covered the drug after a ten percent copay. At least that’s the way they interpreted the benefit. Until they picked up the prescription, they couldn’t be sure.
The following morning Jim held his breath as he waited for the pharmacist to retrieve his prescription.
“Thirty-three dollars and seventy-four cents,” the young man quoted.
Jim exhaled. He’d dodged another bullet. However, his relief evaporated as he read through the information stapled to the bag. What would happen when he swallowed the drug?
“Aren’t you going to take it,” Becke asked as they unloaded the pharmaceuticals on the kitchen counter an hour later?
“I thought I’d wait until morning.”
“Why? Take it at night. If it causes nausea, you could probably sleep through it.”
Her suggestion made sense, but he didn’t open the bottle. “The other drugs start in the morning. I’ll start drinking my water and everything else tomorrow.”
He knew Becke wasn’t convinced, but he didn’t care. Yes, he wanted the drug to start to take effect, but chemo…? The thought of swallowing it gave him a funny feeling.
The following morning Jim awakened groggy, but he still remembered the life-sized version of a dream. Although he continued his morning routine, he couldn’t shake the feeling.
During the commute to work, he finally told Becke. “You’re not going to believe the weird dreams I had last night.”
He felt her stare in the gray light of the car as they sped along I-26.
“I dreamed I was resistant to the chemo. I awakened in the middle of the night in a sweat with my heart racing. I hadn’t even taken it yet.”
“Pretty scary stuff,” she added.
More than you know, Jim thought as the lights of the oncoming traffic whizzed by him.
Although he and Becke didn’t ask for a day off, managing his health occupied their thoughts and actions. Jim faxed an authorization to release his records to Amin’s office. Becke changed his primary care physician to Dr. Patel. Finally, Jim explained to his manager about his disease and outlined the time he anticipated he would need away from work.
Toward the end of the day, they received good news. Dr. Patel called with the genetic results. The final diagnosis was Chronic Myelogenous Leukemia. The atypical cells didn’t show in the final workup so Dr. Patel didn’t anticipate a problem with Jim’s response to treatment.
After a stop to sign the release of records, they arrived home later than usual. The message on their answer machine blinked in the dim light of the November day. As Jim glanced at the red flash, unease shivered down his spine. Now what?
The wrinkle in his brow relaxed as the voice of the bicycle shop’s clerk filled the kitchen. The new bikes he had ordered had arrived. A glance at the clock hastened his step. The bicycle shop closed in twenty minutes. The next day was Thanksgiving so if they didn’t get the bikes tonight, they would have to wait to use them after the holiday.
Jim hesitated. How much time would he have to ride his new bike? Worse, the cost of the bikes wouldn’t cover a month of his prescription. He pushed the thought from his mind and grabbed his keys.
“Do you think we can make it before they close?” Becke asked.
Jim pulled the car door closed. “I don’t know.”
Right now, he didn’t know a lot of things, but a sense of urgency pushed him forward. If he didn’t hurry, his life would be over before he had a chance to live it.
Traffic on I-26 moved at the speed limit, but Broad River Road ground to a stop within one mile of the shop. Jim checked his watch—ten minutes before close.
Becke lowered her window and scanned the line of stopped cars in front of them. “I don’t see anything. I could walk to the store and pick up the bikes and you could pick me up when the traffic moves.”
His cell played the incoming call tune.
Jim glanced at the cell screen—the call was from his son, Ethan. “Yea?”
“Since Amanda and I are leaving tomorrow, do you want to meet me and Lori for dinner?” Ethan said.
“We can if you want to wait until after we pick up the bikes.”
“That’s fine. Amanda isn’t home from class yet.”
As Jim closed the cell, the shop with the giant-sized bicycle on its roof loomed one block away. Jim checked the time from the dash clock.
“I think we’ll make it.” Becke said.
“We’ll make it. They’ve made enough money off of us. They won’t complain about a few minutes overtime. Ethan wants to meet us for dinner.”
Becke’s cell interrupted the conversation.
“It’s Lori,” she said.
“Why does Ethan plan these things at the last minute?” Lori, their daughter complained.
“Work it out,” Becke said snapping her cell shut.
Jim glanced at his wife in the shadow of the interior lights. He wasn’t the only one feeling pressed for time. He drummed his fingers along the steering wheel. His leukemia had messed up everyone’s life. His son felt guilty about taking his Thanksgiving trip. His daughter was juggling school, work and her three-year-old to meet for dinner.
Everyone felt pressured to meet and no one said no because they understood the opportunities were no longer endless. The irony was opportunities had never been endless. They operated in the pretend world. You could pretend time was unlimited unless something happened to serve as a reality check. Leukemia was his reality check—he wasn’t going to live forever.
As he braked in the parking lot of the bike store, his thoughts rolled to a stop. Inside the store, bright lights and cheerful clerks greeted them. No one seemed to mind the fact that it was Thanksgiving Eve and closing time.
As Jim mounted his new bike and the clerk adjusted it for a perfect fit, thoughts of a serious diagnosis faded. He clicked on his head and tail lights and checked the zippered bag beneath his seat before his test ride. When he pushed off, the weight pressed against his shoulders shifted. Jim drew in a breath of fresh air tinged with a hint of exhaust from the traffic still traveling along Broad River Road. Although the shop had a limited drive, he picked up speed on the downhill and lifted his chin to meet the breeze fanning his face. He couldn’t wait to go on a real ride.
After an hour of instructions, Jim exited onto Broad River Road with the bikes strapped to the trunk mount on the car. Reality replaced the pressure in the back of his neck and shoulders. His bike was great. The traffic had diminished. The weather was mild and he still had CML. Life would be perfect, if he were healthy.
At the house the conflict between the new bike and his new disease continued. Jim removed the bikes from the rack and organized the garage to store his new possession. Although he longed for the freedom the bike offered, the family was scheduled to meet for dinner. He didn’t take his family time for granted. Healthy Jim had always enjoyed family time. However, Cancer Jim understood the value of each meeting. Family time was not limitless. One moment, one call, one lapse in judgment could wipe out tomorrow. He had today, and he had to embrace each moment.
Although Jim silently repeated “enjoy each moment” as his family assembled and cooked a meal at home, guilt still nagged at him. CML didn’t monopolize the conversation, but Jim wondered if it was on their minds. Was his disease invading their happiness? He was supposed to be the provider. Now he was consuming the family’s resources.
Ethan prepped his hamburger bun. “We don’t have to go to Mississippi tomorrow.”
Jim swallowed. “I thought you already had plans.”
“We do, but if you want us to stay and have dinner with the family, we can.”
“You don’t have to change your life for me,” Jim said.
Ethan shrugged. “Just checking.”
Although the conversation shifted to everyday events in Ethan and Lori’s lives, Jim couldn’t shake the guilt and depression. He wanted more evening meals. He wanted to watch his family grow old. He wanted more life.
However, his life was one giant conflict. He didn’t want his family time to end, but a feeling of relief swept through him when they left. The house settled into the quiet of just Jim and his wife. Unfortunately, as the household quieted, his thoughts activated more.
“Do you want to give our bikes a spin? We have lights,” Becke said.
“You bet,” he said infusing his voice with a false cheerfulness.
The minute he shifted into a higher gear, his worries seemed to fade. With the wind in his face and the scenery whipping past him, it was hard to acknowledge he had a deadly disease. His legs pumped faster as sped down the long neighborhood hill and built up speed for the incline that followed. In front of him, the rear light on his wife’s bike blinked steadily. She slowed as she neared the crest of the hill. He downshifted and pedaled past the air hunger. He’d never had the stamina of his wife, but she’d been running for ten years while he’d played golf—not exactly a taxing sport.
His breath came is short puffs, but he didn’t give in. Maybe he couldn’t do anything about what was going on inside his body, but he could sure control how long and fast he rode the bike. He wasn’t going to give in. If Becke turned toward downtown Columbia, he’d follow.
She rolled to a stop in the driveway and he pulled in beside her. Her smile was infectious.
“That was great!” she said.
“Yea, it was.”
They didn’t mention the fact that the bike riding could have a limit on it. Jim pushed the kickstand in place. The funny thing was life had always been limited. He was too busy living it to notice. He noticed now.
Jim positioned Becke’s bike beside his and followed her inside.
“What’s the plan?” she asked.
“I’m going to email Kath and Walt.”
Since Jim’s sister and family lived in Illinois and his brother lived in Oakland, they’d never shared a close family relationship. Of course Jim had always wondered if they’d have shared close ties even if they lived in the same vicinity. It just seemed the Turner family followed different paths. Since the death of his mother, the ties had slipped further away.
Jim powered up his PC and stared at the screen as it blinked through the various stages of readiness. How did you tell your older sister and brother that you might be dying? The screen refreshed, but Jim didn’t start typing. No sense beating around the bush.
He’d always faced problems head on. No sense in changing his mode of operation during a crisis. If something major happened, he didn’t want his illness to come as a surprise to the rest of his family. Besides, he needed to tell them, not leave it to his wife. She had enough to deal with on her own. She’d already planned to email her family and ask them not to contact her for a while. He didn’t understand why she didn’t want to talk to anyone, but it was her family, her decision.
For every line, Jim erased two. The words just didn’t sound right. He didn’t want pity. He just wanted to share the facts and he was starting to be an expert on CML after his exhaustive Internet search. Although Jim didn’t feel sleepy, it was almost eleven o’clock when he finally hit the send key. One more task accomplished. He usually felt good about completion. Tonight, there was a sense of relief, but nothing else.
For the last thirty years Jim and Walt had talked on the phone twice a year—maybe. The phone rang within the hour. Jim glanced at the caller ID.
“It’s Walt,” he said to Becke.
“Are you ready to talk about it?” Becke asked as the phone continued to ring.
Jim picked up the receiver and pressed the on button.
“I was feeling sorry for myself because I just had a hemorrhoid procedure until I read your email,” Walt said.
Jim laughed and after the unusual opening, the conversation flowed easily between them. He didn’t know if it was the ice breaker joke or just the fact that they discussed the science of his disease and not how he felt. When he replaced the receiver an hour later, he felt better. He’d discussed his leukemia and prognosis without breaking down.
That was one of the negatives about a serious illness—if you didn’t count dying. To Jim, a man needed to stay in control of his emotions and lately he never knew when he was going to break down and weep like a baby. He could deal with an emotional outbreak at home, but he certainly didn’t want it to happen in public.
After his conversation with Walt, he had hope. Maybe he was starting to develop a scab over the raw ugly sore of his illness. Perhaps in time, he could move on and enjoy the rest of his life in place of feeling sorry for himself. Like many important lessons in life, learning to deal with his disease was a process.
Cancer seemed to exaggerate everything–highs were stratospheric and lows were in the basement. Immediate family members triggered his highs, especially his three-year-old grandson. Dylan made him laugh, showed him the wonder of life’s details he had forgotten.
However, time with Dylan was bittersweet. Every time the child wrapped his little arms around his neck, Jim wondered how long he had to enjoy those hugs. Would he see Dylan grow? Would he cheer at his first ball game, give advice for his first girlfriend?
Although he doubted sleep would come easily, Jim prepared for bed after Walt’s call. How could he enjoy life, when he constantly focused on how much time he had left? Would his life always be consumed with the next test to indicate if he had a response from the chemo? Would every moment of joy be followed by intense sorrow?
He spent another hour talking to Becke about his thoughts and fears. They had shared many peaks and valleys in their thirty-plus years of marriage, but this had to be the granddaddy of all issues. As they embraced, Jim’s emotions rushed through him. This time it didn’t matter. Yea, he might have a headache in the morning, but he had a feeling it was part of the grief process. After all, it seemed fitting that he should mourn the shortening of his life.
Once the emotional tide eased, the nausea hit. The Gleevec side-effect was not fun, but he could tolerate it. Besides, once he drifted to sleep, an upset stomach no longer mattered. Leg cramps were a different matter.
The pain of his first calf spasm launched him off the bed like a rocket. Worse, walking didn’t relive it. Jim rubbed the tennis ball sized knot in his left calf. He’d suffered from a Charlie horse in the past. That was a cramp. Gleevec cramps were a whole different pain level.
He limped from the bedroom to the hallway, but the muscle knot didn’t ease. Jim increased his efforts to match the intensity of the pain. He started by rubbing the muscle, then kneading. As a last resort, he punched his calf. Nothing worked. He was near panic from pain and desperation, when his calf finally released.
“Are you okay?” Becke asked.
“Yeah, sorry, I awakened you.”
Jim limped back to the bedroom. “Leg cramp. It’s the worst one I’ve experienced. I couldn’t get it out.”
“Do you think it was the bike ride?
“I don’t know, but I’m not going to stop.”
He gently rolled to his side and positioned his leg. Was this what he had to expect in the future? Not that he had a choice between living and cramps. Still, he loved his new bike. Did this mean he must endure vicious cramps after a ride?
Life continued in spite of the fact that he wanted it to stop. Not stop as in the end-far from it. Stop as in hold up so he could catch up. His time was limited and he didn’t want to spend it scraping out a living. However, what he wanted and reality were often very different. Tired from his cramp interrupted sleep, he returned to work. Although his work hadn’t changed, he had.
In place of researching the processing error on his desk, he filtered through his life choices. Why hadn’t he selected an occupation that would have helped people? Sure healthcare claim processing was important, but it didn’t really impact lives. Why didn’t he stay in school? He had the means. At the time, however, he lacked motivation and confidence.
With his thoughts in a continual spin, Jim walked to the farthest bathroom from his desk and then stopped at the water fountain on the return trip. His legs were still sore from last night’s attacks and Becke had instructed him to move around once an hour to increase circulation. According to his wife, long periods of sitting placed pressure on the vessels that ran along the backs of his knees and thighs and reduced the blood flow.
At his desk he forced his mind to resolve the computer problem. It was a simple repair and a month ago he would have fixed it in half the time. A month ago he was living in a cloud just like most of the population. He had taken the first fifty-five years of his life for granted and now in the final stretch he realized people had a limited number of choices. However for now, he had to manage one day at a time.
For a week Jim drifted through his work day on-hold. The minute he walked out the door and picked up Becke, he felt his life started. He resented the work intrusion, but he savored the evening. By the end of week one after diagnosis, Jim felt as if he had started to regain control over his emotional roller coaster. However, he still had to get through the endoscopy.
He was anxious to get the procedure behind him. Part of him wanted them to find the source of the bleed and the other part wanted a clean bill of health. Reality told him that a clean bill of health was only a fantasy, but that didn’t erase the secret desire.
On the day of the scheduled procedure, Jim entered the outpatient department and took a deep calming breath. He’d undergone the procedure a few years ago and knew the drill. Still, a shiver of apprehension picked at his mind. The last time he’d endured the procedure, he didn’t have blood cancer. The last time his blood counts, along with his life, were normal.
“James Turner,” a young woman in a navy scrub suit said.
“That’s me,” Jim answered.
“Dr. Patel wants a blood test,” she said.
He glanced at his wife and a silent message passed between them. From the look on Becke’s face, she didn’t know the reason for the additional test. Any other time, he would have blown it off—not now. CML changed all of that. Questions circled his mind like a ring of vultures. Had something else shown up? The young woman continued to talk to him as if she hadn’t a care in the world. She probably didn’t. Too bad he couldn’t mimic her behavior.
Thirty minutes later Jim blinked. A white curtain has been drawn around him. His thoughts came in snatches of information. Was the endoscopy complete? He swallowed past a dry scratchy throat.”
Becke squeezed his hand. “Other than a large hiatal hernia, they didn’t find a bleed.”
He blinked her into focus. “Nothing in my stomach?”
Although he wanted to stay awake and go home, his eyes drifted closed along with his thoughts. He opened them again and Dr. Patel and Dr. Amin were seated by his wife. For some crazy reason his memory was worthless.
An hour later Jim pushed the button to move the passenger seat back. “So he didn’t find anything?”
Becke clicked on the blinker to exit the hospital. “I bet you asked Dr. Amin that question three times.”
“I don’t remember.”
“Nothing like Versed.”
Jim rubbed his head. The brain fog was lifting. “Was I obnoxious?”
“Normal. Dr. Amin answered every time. He knew you didn’t remember asking.”
“What about the extra blood test?”
“Dr. Patel visited. Your WBCs are down so you are responding to the Gleevec. Your platelets are still high so he ordered another drug to get them down.”
That’s just what he needed—more drugs. “The Gleevec works that fast? I guess that’s good news.”
Becke turned onto the four-lane road leading toward highway 77. “Are we heading for Starbuck’s on the way home?”
Jim swallowed a drink of water from the cup in the console. “Are you kidding? I’m starving.”
The moment he stepped on the asphalt parking lot of his favorite coffee house, the last of the tension drained from his body. He blinked at the cloudless cobalt blue sky. The procedure was over. His counts were improving and it was a glorious December morning. He halted all subsequent thoughts as he let the aroma of coffee embrace him. He was happy to be alive.
To celebrate, he ordered a sausage, egg, and cheese sandwich, a piece of ginger loaf and two cups of Christmas Blend. Becke gave him one of those I-can’t-believe-you-ordered-that looks and smiled. Why not enjoy the meal? He had been fasting since last night! As he chased each bite of spicy sausage with his favorite bold brew, he refused to acknowledge the negative thoughts picking at the edges of his mind.
The feeling of well being had evaporated by the next morning. Doubt started with the buzz of his electric shaver. He questioned if yesterday’s upbeat mood was only a byproduct from the endoscopy drugs. More important, was yesterday merely a dress rehearsal for next month, next year?
He blinked at his reflection in the mirror. He looked the same. What was happening on the inside? Did he carry a ticking time bomb inside his body? Jim checked off his medical problems: he had leukemia, he had an unidentified potential bleed, his white blood cells had decreased, but his platelets continued to rise toward the critical point. At any time he could form a clot in his leg, his heart, or his brain. If they thinned his blood, he ran the risk of bleeding. If they didn’t control his platelets, his blood would clot. Jim unplugged the shaver and shook the debris into the waste can. He had all of this crazy stuff trashing his blood and he walked around as if nothing was wrong. How weird was that?
In addition to his Gleevec, he swallowed a drug called Argylin to control the platelets. Jim gulped another drink of water just for good measure. What new side effects would hit him next? He checked out the ceiling and smiled at the crazy thought. He could swear there was a big shoe swinging over his head just waiting to fall with the next lab report.
After completing their morning routine, Jim opened the car door for Becke. “Do you think we’ll eventually get numb from the constant drama?”
She sat in the passenger seat and waited for him to slide behind the wheel. “I don’t know. It seems it’s always something. And we used to complain about being bored.”
“I could handle a little boredom right now,” Jim said over the purr of the engine.
Each day at work seemed a little easier. Jim still resented spending so much of his time there, but at least he was productive again. He still looked forward to the best time of every day–the moment he stepped out of the office building. He always took a deep breath of freedom before driving to pick up Becke.
Once she joined him, life was sweet for another evening—most of the time. He hit a snag at the pharmacy.
“I thought big pharmacies stocked a little of every drug,” Jim he followed Becke out of the electric door.
“I guess they can’t stock all of them. I never really thought about it.”
“Until last month, drugs weren’t a big deal in our family.” Until last month health wasn’t a big deal. Funny how one lab result can impact your life.
Another thought occurred to Jim as he turned the car toward the daycare to pick up his grandson. “Could I have a stroke at any time?”
When she didn’t answer right away, Jim glanced at the passenger seat. His gaze locked with hers.
“Yes,” she said.
Children possess the amazing ability to remove anxiety from your mind. The minute Jim opened the door to Dylan’s classroom, his grandson looked up.
Dylan ran to him and wrapped his little arms around his knees. Thoughts of CML dissolved with Dylan’s constant chatter. He needed a snack. He learned a new song. He had a long-winded story to tell about one of his playmates. Dylan’s nonstop wonder with the details of life occupied the rest of the evening. Jim welcomed the freedom Dylan’s presence brought. As Jim was more painfully aware—nothing lasts forever. As the evening’s activities ended, the issues surfaced.
Becke hugged Jim as they prepared to sleep. “I’m going to do better.”
“Do better? You’ve been right with me every step of the way,” he said.
“No. I’ve been whining. This isn’t about me. It’s about us. I can’t change the outcomes, but I can change how I respond to it. I want to support you, not drag you down.”
Guilt replaced Jim’s unease. “Why don’t you take a break? There’s no need for you to travel up and down the road to Dr. Patel’s with me. I’m a big boy. I can go by myself.”
“We’re in this together. Besides, I would just wonder what was going on and have questions later.”
Inside, two emotions warred. He was happy she wanted to accompany him. The trips to his oncologist gave them time to talk and reflect. Besides, he enjoyed her company. However, he hated that his illness had taken over her life too. It wasn’t fair. She wasn’t sick.
Instead of living, his family had focused on his health. Worse, he couldn’t do anything to stop it. Feeling powerless, he lost the battle to control his emotions just like he had lost the battle to provide protection for his family. Failure flooded him and his efforts to build a positive outlook drifted from his grasp.
After thirty minutes of silent wallowing in despair, he regained control. Enough was enough. Every day was a blessing and he planned to be thankful to be alive to enjoy it. He could rationalize it. He could say it. Could he live it?
The following day, he identified a step in the right direction. Exercise was important. His wife’s motto of “use it or lose it” circled in his mind. He still had some getty-up, but he wanted to improve his stamina. Motivated by his renewed determination, he didn’t only drop off Becke at her evening appointment. He dropped off Becke and the car.
“I’m going to start walking. Call me when you leave.”
“You’re not going to walk all the way to the restaurant!” Becke said.
“You said I need exercise. I don’t know how far I’ll get. I’ll head toward McAllister’s. Call me when you’re finished and I’ll tell you where I am.”
“Exercise is a good thing, but you don’t start out long distances. Start small and gradually increase it.”
Jim kissed her. “Call me when you’re finished.”
As the evening stars blinked in the pink tinged sky, Jim waved and headed toward the sidewalk. He didn’t plan to jog, just walk. Besides, it was a beautiful evening-chilly but not cold. At a little over six feet tall, the blocks passed quickly. The occasional fast-food restaurant, gas stations, and furniture store that dotted the street added interest to his journey.
Halfway to his destination, muscle fatigue slowed his stride, but Jim pushed forward. His walk represented a contest of his mind over body. With each step his motto repeated—exercise improved strength and health.
The ring of his cell interrupted the engine sounds of the vehicles passing along the road to his left.
“Yes?” he answered.
“Where are you,” Becke said.
“Just across the street from the restaurant. Where are you?”
“I can’t believe you walked the entire way!”
After checking for a letup in traffic, Jim trotted across the three lanes and entered the restaurant parking lot. He waved at his wife, standing in front of the parked car. She didn’t smile, but he refused to let her mood interfere with his satisfaction. He had leukemia, but that didn’t mean he couldn’t enjoy life. He’d always been active and he planned to continue his activities until he couldn’t.
The feeling of accomplishment sustained his spirits until two hours after he’d turned out the light for the night. That’s when the leg cramps started. To further disrupt his sleep, he had increased his fluid intake as prescribed with the Gleevec, so every few hours he was awakened by a leg cramp or a bathroom break.
Frustrated, Jim walked through the worst of the cramps. This was just great. He had to drink more fluids because of the Argylin and the chemo. He needed sleep so his body could heal. Try that with a full bladder and baseball cramps attacking his muscles.
The next week Jim received good news—his WBCs had continued to drop and his platelets had dropped to normal. However with leukemia, patients often received bad news with the good news. His blood work to monitor kidney function indicated signs of drug intolerance. If his body didn’t adjust to the chemotherapy in a few weeks, Dr. Patel might have to discontinue the Gleevec. What an irony? The drug he needed to save his life could shut down his kidneys and kill him.
Jim struggled to maintain his positive attitude and focused on the fact his CML had responded to the chemotherapy. He was rewarded the next week. His kidney function had returned to normal and his CBC continued to improve. He still suffered from anemia, but all other blood components measured in the normal range. Even more encouraging, Dr. Patel discontinued the Argylin to decrease his platelets. Jim pumped his fist-one less drug to swallow, worry about side-effects, and pay for.
One month after diagnosis, CML no longer monopolized Jim’s thoughts. After a review of the changes that had occurred to him over the past month, he assessed his emotional response. His initial efforts to behave as he did before diagnosis had been a bust. He was no longer the same man. Life had changed and he understood the life lesson. He wasn’t issued a days-lived guarantee at birth. However until his diagnosis, he had behaved as if he would live forever.
With his renewed life perspective, he planned his future. Although he had always managed his financial affairs in a prudent manner, he found he wasn’t prepared for sudden death. Since CML was a chronic condition, he understood he would more than likely have a slow decline. The old Jim might have waited. The new Jim knew better. His life contract didn’t have a leukemia clause. According to statistics, his greatest risk was traveling to work. Within a month he created his “what-if” document and made all required final arrangements.
Once assured his wife and family had the best protection he could offer, he created a “bucket list.” This list included his personal goals. Like Jim, his list didn’t include unattainable items, but he made plans to complete important objectives—places he wanted to see, things he wanted to learn, things he wanted to say.
At work, he continued his work ethic, but he developed a more realistic filter. The small stuff no longer annoyed or worried him. He was hired to do a job and did it. When he walked through the exit every evening, he left his work and focused on the joys in his life—family and friends.
He was grateful for every morning, every family meal, every outing. This day could be your last. Make it count, became his motto. Worries about dying no longer occupied his mind because he was focused on living. His only fear was that he might slip into the old Jim—the guy who had lived years living in the fog of unimportant events. He had to remember to value each day as a precious gift.
The CML rollercoaster ride had transposed into life. Yes, it still had hills and dives, but they didn’t roar down the rails at top speed or bend around a life curve on one wheel. He had learned an important lesson and it had given him a tool to manage the rest of his life.
In spite of his new philosophy, Jim continued to struggle with his feelings about the way his internist handled the case. He wondered if that physician would continue to make mistakes with other patients.
After confessing his concerns to his wife, she said, “What do you want to happen?”
“I just want him to know. I shouldn’t have left a message. I should have waited and talked to him face-to-face,” he said.
“Make an appointment.”
Jim shook his head. “Six months have passed. Maybe I’ll write him a letter so I make sure I address all of the issues.”
“Write the letter. It will help you put closure on this issue. Once it’s done, you can decide to send it or tear it up.”
To Jim, it seemed like a good idea, but after a few weeks procrastination, writing to or about Mott no longer claimed his attention. Six months after diagnosis, Jim’s BCR-ABL returned with no Philadelphia chromosomes. According to Dr. Patel, Jim’s CML was in remission. On the drive home, Jim felt as if he stepped outside, he would need weights on his feet to keep him from lifting to the sky.
“I think we should celebrate,” Becke said.
“Yep, I agree. I guess it could always come back.”
“Patients can develop a resistance.”
“I could also get hit by a car. I don’t want my attitude to change.”
“We’ll write the story so we always remember what happened to us.”
On the first anniversary of his diagnosis, Jim’s BCR-ABL again returned with no Philadelphia chromosomes. He and his family traveled a long way along the cancer path. Now, he focused on the big picture-enjoying every day of health, every day with loved ones. Although the return of the nightmare could be one lab test away, he had no guarantee tomorrow would be here for the blood draw. That’s why he continues to live each day and celebrate life’s joys. Jim didn’t wish cancer on others, but he wished everyone could learn the lessons living with it had taught him.