Dream New Dreams Page 3
We made it through the early days and months of having a premature baby who needed to be awakened every three hours for feedings. Adding a baby to our relationship came with its own set of challenges as we balanced being parents with keeping our love and marriage strong. We struggled as a couple during the first couple of years, as I threw myself into being a mother and didn’t give Randy the time and attention he needed. There were many heart-to-heart discussions and some tears. The great thing about our marriage was that we could have these soul-baring talks without either of us letting our emotions get the better of us and saying hurtful things that we would regret later. We never raised our voices in anger at each other. We were both committed to making our marriage work and I knew beyond a shadow of a doubt that he wouldn’t walk away or give up on us.
When I found out I was pregnant with Logan we were living in San Mateo, California, where Randy was doing a sabbatical with Electronic Arts, a company that makes video games. A sabbatical is a special academic privilege that a professor may be awarded once every seven years or so, going off from his or her classes and university duties to do something intellectually enriching. Randy’s first sabbatical had been with Walt Disney Imagineering. Now he was working with the video gaming giant to get a better understanding of the gaming industry’s culture. Halfway through my pregnancy the sabbatical ended and we moved east to our home in Pittsburgh. During one of my prenatal checkups, my urine test showed alarmingly high levels of protein. The doctor told me to go right to the hospital; they needed to do more tests because I was showing signs of preeclampsia, and they might need to induce labor. I was so frightened, so scared that we were going to have a repeat emergency delivery and something would be wrong with the baby. To make matters worse, I had two-year-old Dylan with me and I couldn’t register at the hospital with him in tow.
I called Randy, who was in a really important meeting, to explain the dilemma we were in. My husband didn’t hesitate and left the meeting immediately to be by my side. He called a sitter to take care of Dylan while he stayed with me at the hospital. Together we waited while the doctors performed one test after another, not giving us any indication which way the situation was going: were my liver and kidneys beginning to fail, forcing them to induce labor? Many hours later, the doctors told us I was going to be OK, and we could breathe a sigh of relief.
Logan did come a couple of weeks early, and I was diagnosed with preeclampsia when I went into labor on October 2, 2004. My labor stalled as a result of the medicine the doctor gave me to keep me from having a seizure. The doctor gave us the option of electing to deliver via C-section or trying for a natural birth. Randy and I talked for a few minutes and when the doctor returned we said we wanted to go natural. Big mistake! After pushing for an hour Logan got stuck in the birth canal. Off to the OR we went with medical personnel flooding the room. Our intimate birthing experience was suddenly swapped out for the drama of an assisted birthing procedure. Logan was too far down the birth canal for a C-section, so the doctor and his assistant used forceps to pull while two nurses on either side of my belly pushed down as hard as they could as I pushed during a contraction. When Logan’s head emerged, we thought his body would just slip out, but that didn’t happen and the doctor had to gently pull some more until the baby came free. I remember allowing myself to drift away and lose consciousness after hearing Logan’s healthy cries. I knew the doctors and nurses would take care of him. When I opened my eyes a few moments later, they were still hovering around the baby and I noticed that no one would let me see him. I asked Randy to let me see the baby, but he wouldn’t do it, saying I could see him later. Instinctively I knew something was wrong and I demanded Randy tell me what was going on. He said Logan’s shoulder had been damaged during the birth. Perhaps a nerve had been pinched. Whatever it was, Logan wasn’t moving his arm or shoulder and we didn’t know whether the damage was temporary or permanent. As I lay there on the table while the doctor stitched me up, terror squeezed my heart as my conscience tortured me: Oh God, how I regretted my decision to go through a natural birth instead of the C-section! I accused myself of being selfish and putting my child at risk. After a while, Randy happily told me Logan was beginning to move his shoulder and that he would be all right. Throughout the ordeal, Randy had stood by my side, never offering a word of criticism or casting doubt or blame. He was simply there for me and I knew I could lean on him.
As our family grew, the demands placed on Randy’s time became more problematic. Traveling a week out of each month was exacting a greater cost on our family. Like most couples, Randy and I discussed how to balance work versus family. At times I felt I was raising our children alone as he was either traveling or working in the lab, at the university or in our home office. His thoughts were often consumed by work—or at least that’s how I felt. Randy wanted to cut back on some of his academic responsibilities, but the question was where. He had several graduate students he was advising on their PhDs, which took up a lot of time one-on-one with them. He had to meet the requirements laid out in his grant contracts until the award period was over. He could reduce the number of talks he gave, but he wasn’t willing to give that up completely, because he enjoyed putting together his talks, as well as delivering them. Finally he landed on his commitment to various academic departments. After much thought and discussion, Randy decided to give up the codirectorship of the Entertainment Technology Center, an academic center he had helped found. It brought together students from various disciplines to collaborate and offered a master’s degree in entertainment technology. Shortly after Randy cut back his schedule, his father was diagnosed with a rare form of leukemia for which there is no cure. Randy was able to use his extra time to spend with his father as well as his still growing family as I was pregnant with our third child. Increasing family demands forced Randy and me to have some heart-to-heart discussions about our life priorities. I wanted him to be able to focus on us when he was with us and not have his mind swirling around problems at work. I also wanted him to be with us more often and travel less. As the children grew older and started to play sports, I wanted Randy to coach them, giving them the positive experience he had as a child when he played little-league football.
Randy wanted these things too, but it was honestly difficult for him to turn down the intellectually interesting opportunities that came up at work. I understood his dilemma, having had to make the decision to give up my career the year after Dylan was born. I had worked and earned my own money since seventh grade, working on a neighborhood farm or doing yard work, then minimum-wage jobs after I turned sixteen. Knowing I was totally dependent on Randy for our financial well-being was a leap of faith on my part. I didn’t realize at the time how much I gave up in terms of intellectual challenge, but I was able to find ways to keep my brain stimulated. Through his job, Randy enjoyed creativity and teaching. I understood that once he gave up being a director of an academic center or an instructor of a popular college course, he would in all likelihood not be able to reverse his decisions later. So we did not make any rash decisions that we might regret later on and kept talking together to find the balance that worked for our family.
In light of where we were in our lives—late thirties/early forties, raising three small children—a life-threatening illness was nowhere on our radar. I quickly learned there’s no scarier pronouncement than “You have cancer,” unless it’s “Your loved one has cancer.” I had previously known only one other person with cancer: an acquaintance from church. No one in either of our families had had cancer that required chemo or radiation. So I didn’t have a frame of reference to help guide me in this moment or down the road on our cancer odyssey. Because that’s where we were: on a new road in life, one that would challenge us individually and test the strength of our love and our commitment to each other.
Looking at Randy, listening to his prediction, processing the doctor’s words, I didn’t realize I was watching my dream shatter in real time. I wanted to cling to the beaut
y and security of our normal life, but that life was like a broken stained-glass window, lying about my feet in shards. In my ignorance I thought if we could just get through this cancer thing, if Randy could just beat the odds, our lives would go back to normal. I didn’t understand that even if Randy did beat the cancer, our lives would never go back to what they were because cancer would always be lurking in the shadows, hiding around the corner. Instead, there was a new normal now and its name was fear.
Night after night I would lie in bed on the third floor listening to the baby making her little noises and thinking about what was happening. After I knew the baby had nursed and would sleep for a bit, I would slip down to the second floor and find Randy equally awake. We would hold each other, and I would cry. Randy would reassure me that I could raise the children on my own, that I could manage the finances. He didn’t cry for himself, but rather for us, for the family he had created and knew he wouldn’t be around to help raise. He cried for me and for the arduous task ahead of me. What a sad sight the sun rose to each of those mornings!
I don’t know how I functioned those days with so little sleep, nursing a baby every three hours, trying to make life seem normal for the boys, planning with the builder to finish our renovations as quickly as possible, meeting with doctors to discuss Randy’s treatment and provide him with the best chance at survival. I guess that’s the biggest lesson I had to learn—and relearn—throughout this journey: to trust myself to face the challenges set before me. One has to dig down deep, but there it is waiting to be released: an untapped well of can-do. I’ve seen people I’ve known rise to face all sorts of obstacles I would never think myself capable of overcoming. So when I found myself in similar circumstances, I realized I just had to do what needed to be done. What were my options, really? Turn my back on Randy, the man who had loved me, cared for me, and helped create a life of happiness and completeness?
I recently heard a wonderful sermon at my church during which our ministers talked about marriage vows; how we have to find the meaning behind the vow and strive to fulfill it every day. Minister John Manwell said, “It takes only a few moments to make the vow, but a lifetime to live it.” Randy used to say something more playful, “Marry in haste; repent at leisure.” I did not regret marrying Randy even in the face of his death. I believe he felt the same about me, even though I occasionally failed him throughout his ordeal. Still, we loved each other and I tried my best to fulfill my vows.
Face the Problem
JUST AS I REACTED with shock and disbelief to the news of Randy’s cancer, so did our family members. To help them process all that the diagnosis entailed, Randy sent an e-mail reiterating the pertinent information. As always, Randy was calm and methodical as he addressed the immediate impact and ongoing threat cancer created in our lives. He did not resort to fear mongering to heighten the drama or to drum up support from his family. Instead, he maintained a positive outlook and chose to focus on the possibilities, however slim. Here’s what he wrote on September 12, 2006:
Jai & I are overwhelmed by the rapid and heartfelt offers of help, which we fully intend to say “yes” to! (see next message).
First, in this message, I’d like to give you all a little information about the disease, and put a few potential fears at rest. I hate using email, but it has the nice feature that everyone hears me say exactly the same thing.
1) Although the diagnosis is scary, I am NOT planning on dying anytime soon! You all need to know that Jai & I are committed to beating the odds, strengthened by our love for each other and the loving support of our families.
2) I want to make very clear that if I should die, Jai and the children will NOT be a financial burden on any of you. We have savings, a paid-for house, and I have life insurance with Carnegie Mellon and external companies that will financially protect Jai if I die. She will need your emotional support, but not your financial support. I met with Carnegie Mellon’s president yesterday, and they will be keeping me on full salary throughout this entire process, and helping in any way they can.
3) I thought I would share specific information about the disease I have: My diagnosis is adenocarcinoma, a cancer of the pancreas. Usually this cancer is found so late that they send people home to die within 3–6 months.
Fortunately, I’m one of the 20% of patients where the surgeons can remove the tumor. I’m scheduled for surgery on Tuesday, Sept 19th at UPMC Shadyside Hospital. It’s a major surgery, where they will remove my tumor, my gallbladder, part of my pancreas, part of my small intestine, and possibly part of my stomach. I will be in the hospital 2–3 weeks, and then another 4 weeks of bed rest at home. At that point, I’ll be physically 100% again.
We have done extensive research, and Jai & I are very happy with my surgeon (who has done over 250 of these operations), and the facility here, which is considered a “high volume” center for this procedure. The surgery, by the way, is called a “Whipple” procedure, after its inventor.
If the surgery removes every last cancer cell, I win. Otherwise, eventually the cancer will come back. Statistically, the long-term prognosis is not rosy; only 10–20% of people who have the surgery survive to five years. Needless to say, I intend to be one of the lucky ones who sticks around! The median age for this disease is 66 and so there is some reason to believe my odds will be better than the typical patient’s (I’m 45 and in good physical shape), so they can hit me with more aggressive chemotherapy and/or radiation after the surgery.
Jai & I are now completely focused on the short term, and taking care of the kids.
I love Randy’s message; it makes me smile every time I read it because it exemplifies his spirit and positive outlook in a dire situation. In his e-mail, the first thing Randy did was to accept and acknowledge the facts. He didn’t shy away from the “C” word or the stark reality of the disease. There isn’t an ounce of self-pity or a hint of depression. He doesn’t come across as angry or morose because he never was—not once. More important, Randy doesn’t sound like a man who is giving up, but rather like a general organizing his battle plan and alerting the troops. His message was reassuring to his extended family and in-laws, but it’s not a glossed-over version of the truth. He doesn’t distort the facts to make up some fairy-tale version of what we were facing. I vividly remember him saying he wanted to send this e-mail to everyone in our family at the same time so that there wouldn’t be a version of the telephone game as one family member called another and gave inaccurate information. What they did with that information afterward was beyond his control, but at least he had given them clear and truthful data on his part.
He was also clear on the delicate topic of finances. We didn’t talk about money with our families, but this situation warranted broaching the subject. By nature, Randy was a frugal person. Even as a graduate student living on a meager stipend he had managed to save money. By the time we had met, he had built up a nice nest egg. As we combined our lives and our incomes, we made sure to add to our savings and retirement accounts, never living outside of our means. Now our prudence would pay off big time. Knowing his family was provided for in the worst-case scenario took a huge weight off Randy’s shoulders, allowing him to focus on his health and treatment. I think it also was a source of pride as the result of his hard work and planning. I, too, was also able to breathe a huge sigh of relief, because the salary I made before I stopped working would never cover the bills and pay for day care and after-school care. Although we were humble in asking our families to help us through Randy’s surgical recovery and treatments, at least we didn’t have to walk up to their door hat in hand, asking for money.
There are many ways people respond to bad news, and especially to a life-threatening illness. Some give in to their emotions for a period of time. I know I reacted emotionally to hearing that Randy had an aggressive form of cancer that had an 80 percent chance of killing him the first year. Behind closed doors, away from family and friends, Randy and I would support each other as we vented our feelings
and fears. We didn’t keep them bottled up, but rather found safe ways to express them. I found that talking to close friends about my feelings or some upsetting change in our predicament helped me tremendously. We were never paralyzed by our emotions to the point that we couldn’t function or address the situation.
It is important to note that some cancers do not afford you the luxury of sitting idly by for days, weeks, or months. We quickly realized that we were now on cancer time, in which each minute of every hour counted as never before. Regardless of how slim the chance, we grabbed for the brass ring before the window of opportunity closed. By acting quickly, by doing our homework, and by educating ourselves about the most effective treatments, we were helping to shape our journey. If we had remained paralyzed with fear or chosen not to act, we could have lost traction in the fight against the cancer and lost precious time for Randy to live.
At this point, the cancer wasn’t exacting a terrible toll on Randy’s body. He had jaundice, and the buildup of bilirubin in his blood made him itchy all over. Since I had bitten my nails to the nubs, my mom scratched his back until there were red marks all over it. All the while, Randy sighed at having some relief from the itching. I think learning what had been causing his lethargy and other symptoms actually made him feel a little better. Randy was a doer. Just the fact that he could do something now—like research the disease and treatments—perked him up. Though his energy level wasn’t what it had been, he still functioned normally for the most part. He wasn’t eating as much and had stopped exercising all together. But he met with people throughout the day and worked on his computer on various projects. He made sure his PhD student was in a good place and that his life insurance had the correct wording on the beneficiary in case he died either during the surgery or due to complications afterward.