Dream New Dreams (14 page)

The trip wasn’t all doctors’ visits though. It wouldn’t have been an outing with Randy if some magic hadn’t happened. While we were there, Randy and I sat down and talked with Diane Sawyer for an upcoming special about Randy and the widespread impact of his lecture and newly published book. It was the first time I’d spoken on camera or met a television personality. Ms. Sawyer was
so personable and her staff so kind that I didn’t feel nervous at all, but rather as though I was having lunch with someone I had recently met and was getting to know better. When she asked me about Randy, I felt as if I was talking with one of my girlfriends about our husbands and our home lives. The illusion would be broken by the cameraman needing to fix a light, the sound man adjusting the microphone, or the makeup artist taking the shine off my forehead. But these interruptions to our conversations were no more disruptive than a waiter coming over to take our order, refill our iced tea, or bring the bill. After the interview was over, Ms. Sawyer walked downstairs with us, said good-bye, and walked off down the street toward home as if we were friends parting after sharing a meal. It was a very special experience.

Later that night in the hotel room, I was awakened by a loud, strange noise. Looking around in the dark, I concentrated to sharpen my senses and shake the fog out of my head. What was that noise? Then I pinpointed it—the loud rasping was coming from Randy. I knew that sound too well; my first husband had been asthmatic, and I had heard him wheeze many times. Randy was wheezing in his sleep. After I observed him for a while, I went back to sleep because the wheezing wasn’t severe enough to wake him up. The next morning, I talked with Randy about his labored breathing during the night, but he shrugged it off, not taking it too seriously. So I pushed my concern aside as we quickly packed up to catch our flight back home.

When we arrived at LaGuardia airport, Randy was starting to feel fatigued. With his hands on his hips, he walked lethargically and grimaced in pain. To make matters worse, our flight was delayed for several hours. Randy seemed to be fading fast, and I talked with the airline representative to switch us to another flight so I could get
Randy home. There was one seat left on a flight leaving within the hour, so Randy got on and I stayed behind. I called a friend to pick him up at the airport and prepped her about Randy’s condition: lack of energy and difficulty breathing. When I got home later that night, Randy was resting, but not comfortably. His friend and Carnegie Mellon colleague, Jessica Hodgins, was visiting with us that weekend, and we tried to figure out what was going on. Jessica and Randy went to the oncologist the next morning for his weekly visit, but the nurse didn’t find anything wrong, just that he had gained ten pounds in a week. This was good news, or so we thought. Randy had been steadily losing weight as a result of the disease’s progress, the way it appropriated the caloric energy Randy consumed, and the chemotherapy treatments that suppressed his appetite.

That night after we went to sleep, I woke up because Randy’s breathing sounded like a freight train. I was seriously scared he was going to die in bed next to me! The next morning, I argued that there must be something wrong and that Randy needed to seek medical attention. But Randy and Jessica pointed out that if there had been anything wrong, the oncological nurse would have found it at the previous day’s exam. Jessica tried to act as the intermediary between Randy’s position and mine. We agreed that if the symptoms continued through the weekend, Randy would call our local oncologist on Monday.

All day Saturday, Randy was uncomfortable and lethargic. He didn’t get much rest that night because he couldn’t lie flat in bed. He couldn’t sleep on his back, and we didn’t have a reclining chair for him to find a comfortable position. We tried propping him up with pillows, to no avail. Sunday morning I argued, cajoled, and begged him to call Dr. Lee, our local oncologist, but now he pushed back even more strongly, saying it was Sunday and he didn’t want to
bother the doctor on the weekend in the event this turned out to be nothing. He argued that in the future, when he really did need help, Dr. Lee would be less likely to believe him and come to his aid.

In my gut, I knew something was seriously wrong with Randy. It didn’t seem right that he couldn’t lie flat on the bed and breathe, or that he had no energy. It was killing me to watch him in so much discomfort, unable to sleep or rest, but I wanted to be respectful of Randy’s choice of when he wanted to seek medical care and when not to. I called Dr. Reiss to ask her advice, and she helped us devise a compromise: Randy would call the oncology office to talk with the doctor on call and follow up on Monday if the symptoms persisted. Randy was very angry with me, saying he did not want me to hijack his health care. He wanted to be in charge of when he called the doctor and what treatments he would accept. He absolutely did not want me to act on his behalf or go behind his back. He wanted me to help him, but there was a definite line in the sand I was not to cross. I agreed to respect Randy’s right to seek treatment when he felt it was necessary. But I felt it terribly unfair that I had to watch him suffer and not be allowed to do anything that could make it better. I resented that Randy did not weigh my opinion more heavily and that he was so resistant to calling the doctor to tell him about his symptoms. There would be many times when Randy would assert that he was in the driver’s seat, and I was expected to come along but never to touch the wheel. He wanted me to be a part of his health care team, to go with him to all his appointments, to sit with him through the treatments, to give up time with our children, and to research treatments. And yet I was not to overstep my bounds of being “the help.” I had the responsibility of caring for him without the authority to act, and it was a very frustrating place to be.

Luckily, I had Dr. Reiss and Jessica, as well as others, to talk to and commiserate with. I also used my journal as a way to blow off steam. On those blank pages, I could write anything I felt, regardless of how inappropriate or irrational it was, without hurting anyone or suffering any consequences. So often when I felt angry or scared or overwhelmed, I found that by writing in my journal I could get those feelings out—purge myself in a way. My entry on Wednesday, February 6, 2008, is pretty typical:

Some journal entries were much longer, more toxic in language than the example above, but it was good for me to get these emotions
out and on the page. If the way I was feeling was too embarrassing to share with others, my journal provided a safe haven—a nonjudgmental, neutral retreat for me to escape to and express my feelings.

During this latest crisis, Randy relented and called his oncology practice. The oncologist on duty prescribed a diuretic medication to get rid of the fluid in his lungs and edema in his legs and belly. Randy’s weight gain, as noted by the nurse the previous Friday, had all been fluid buildup. The diuretic worked, but not well enough. He could sleep lying down, but any physical exertion, including going up or down the stairs, left him breathless. Finally, he called the oncologist’s office at the beginning of the week, and we went in for some tests. The nurse confirmed that Randy was suffering from congestive heart and renal failure. While the nurse and Randy continued discussing his condition and options, I used my Kindle to do a quick Internet search: renal failure meant Randy’s kidneys couldn’t rid his blood of impurities and concentrate urine, while congestive heart failure meant his heart wasn’t pumping enough blood throughout his body. Once I had an understanding of Randy’s condition, I turned my attention back to the conversation. Randy and the nurse talked about his appointment with the nephrologist (kidney doctor) at the end of the week. As he was leaving, I lagged behind and asked the nurse if Randy was going to die from congestive heart failure and renal failure. I wanted to know if we were at the end of our journey. I was so scared, unsure how to evaluate and respond to the information we had. Our oncology nurse told me very gently that Randy wasn’t going to die right now from renal and congestive heart failure and that he would recover from these conditions. That’s all I needed to know at the moment. My husband and I went home and processed in our own way what we had learned;
keeping our hopes pinned on the appointment with the nephrologist on Thursday, March 6.

On Wednesday, March 5, Randy blogged about how he was feeling during this time and what was going on with his body:

Randy had been keeping a blog about his fight against the disease since he was able to type on his laptop after the surgery to remove the original tumor. Friends, colleagues, and many of his current and former students wanted to know how he was doing. Randy wanted to share, but he was careful to control the way he described his situation, never getting morose or becoming emotional. As in this post regarding his renal and congestive heart failure, he remained positive and upbeat. Sometimes I became irritated that he presented this front on his website, keeping the darker side for me and close friends and family to see. I interpreted his actions as an attempt to spare people the gory details or to avoid pulling at their heartstrings. Randy was also not expressing his own feelings about the fear or pain he was experiencing. Blogging wasn’t going to be the place for him to vent those emotions.

After undergoing a stress test at Norfolk General Hospital to measure how his heart was working, Randy slowly walked with me across the street to the building where the nephrologist had his office. The distance couldn’t have been more than a thousand feet, but even that short distance was too much for Randy. He had to stop a couple of times along the way to rest. Each time we stopped, I
offered to get him a wheelchair, which he refused. Inside the office building, Randy sat down to catch his breath. His breathing echoed loudly in the lobby, and people stared at us. I was so glad we were there to see the doctor! I just kept thinking to myself that Randy was going to get help. I encouraged him (and myself) to hang in there. Finally, he was able to stand and walk into the elevator, and we rode up to hear what the nephrologist had to say.

Dr. Thomas Whelan had an easy way about him and treated Randy as an intelligent human being with whom he could discuss the details of his condition. Dr. Whelan realized that Randy was suffering. He explained that the damage to Randy’s kidneys and heart was significant enough to warrant a stay at the hospital. With the help of both Dr. Whelan and a cardiologist, Randy would have the best and safest method of recovery. A huge weight was taken off my shoulders: I was so relieved when Randy agreed to check into the hospital and allow Dr. Whelan and a cardiologist to treat him. Randy’s other option had been to return home and have me administer diuretics and other prescribed medications and report back to the nephrologist and cardiologist on Randy’s status. I felt totally unqualified to take on that responsibility. I didn’t want to be in a position where I might miss a symptom or misread data and cause more damage to Randy’s already fragile system.

With Randy’s decision made, Dr. Whelan insisted on getting a wheelchair for him and pushing him from the office building over to the hospital admitting area to ensure that there were no hiccups in getting Randy admitted. Now, I’ve been to many hospitals and cancer centers, met a lot of caring physicians and nurses, but I have never seen another doctor have such concern for his patient as to push his wheelchair and then deal directly with the hospital administration! Not only were Dr. Whelan’s actions an indication of how
serious Randy’s condition was, but they also illustrated what good hands we were now in. I breathed a sigh of relief, knowing it was going to be all right for now.