Initially, the move to Sugar Land seemed to be just what we needed ... the next great adventure, a new start for a new chapter. When we learned the cancer had metastasized it took on a different feeling. Instead of an adventure, it was more like a winding down, a tidying up, a gathering of loose ends. I was struck by the symmetry of the course of our time together. We started out as young newlyweds, living in a city far away from friends and family, sorting it out ourselves. Here we were again, in the same situation. Though we had plenty of offers of assistance and many people who wanted to come help, that was not our way, it was not what we did, nor what Cindy wanted. Instead, we walked alone, for the most part, at least in the practical, everyday sense. It was what I needed to do, and what Cindy wanted to do, and I can't think of anything we would have done differently given the chance.
Cindy had been treated by the
Texas Oncology group at Baylor-Plano, and they were the doctors that confirmed the cancer had returned. We met with the same group here in Sugar Land, which was only a few miles from the new house. They recommended an initial treatment plan in consultation with her previous oncologist, and told us that there would be no cure, that eventually the cancer would win, but in the meantime we could treat it as a chronic disease, attempt to slow down the growth of the cancer, and to extend life and maybe find some time in remission. There is a long list of approved, available medicines and as long as she could physically receive and handle the treatments, we could keep trying different drugs. It was a race to find effective medicines.
We understood. We knew that even the best of the approved treatment options had 30% or less effectiveness. She received the most effective treatments on her first rounds of chemo, and they didn't work. I checked into getting an appointment at MD Anderson, one of the best cancer treatment and research facilities in the country. As long as we were here, I felt we should take advantage of the resource. Cindy was ready to just start treatment, but I signed her up on line for an appointment with an MD Anderson breast cancer oncologist with offices in Sugar Land. We met with
Dr. Saleem and Cindy was immediately comfortable. Dr. Saleem re-iterated that it would be a chronic disease treatment program, but added that there were a significant number of clinical trials available at MD Anderson. We didn't think long about it, and soon Cindy was an MD Anderson patient, signed up for a clinical trial, and we learned that there was a whole new level of navigation skills required for their version of the cancer treatment industry.
We had been cautioned before switching that MD Anderson could be impersonal, that you could feel like a number or research subject rather than a patient. There was a lot of that, but Dr. Saleem was her relationship touchpoint and that was all she needed, to have a person behind all the labs and biopsies and forms and appointments.
My employer, and especially my co-workers, were very supportive, allowing me to work a flexible schedule to take Cindy to appointments and treatments. A typical MD Anderson day involved leaving the house at 7AM, dropping Cooper at doggie daycare, then driving down to MD Anderson Mayes Clinic in the medical district. Once there, it was up to the 7th floor to have her
power port accessed, and then down to the labs on the second floor to have blood drawn. After an hour or so wait, long enough for the labs to be run and recorded, it was up to the 5th or 6th floor to meet with Dr. Saleem, or the research nurse if she was in a trial, to see if she was in good enough shape to receive treatment. Then it was on to the infusion area, where we signed in and waiting for a bed to be available. Depending on the medicine, infusion would take anywhere from 2 to 10 hours. Some days I had to leave early to pick up Cooper from daycare before they closed, and then go back to MD Anderson to pick up Cindy.
Treatment days were surreal. They were structured and planned, but oddly chaotic because you did not know how long the wait time might be, if a room would be available, what the lab results might say or how long it might take the pharmacy to create the chemo cocktails. I always brought my laptop, but rarely worked. It was as if, for that period of time, nothing existed outside of the schedule, the medicine, the information from doctors and nurses, and the waiting. Inside the massive MD Anderson facilities, where they have indoor electric shuttles to take patients from building to building, was like being in isolation, with a view to the outside, healthy world, but no way to be part of it. Aside from the bureaucracy and facilities and the constant poking and procedures there were the other patients. Hundreds, maybe thousands, filling up the comfy chairs and coveted recliners in the halls and waiting rooms. The caregivers and friends accompanying the patients displayed their own patience, courtesy, and compassion, but they also all had this subtle tension, from frustration, perhaps, or maybe it was just the uncertainty of it all. Furrowed brows. Tight lips. Tiredness, all around.
Cindy would often sleep on the way home, exhausted. Leaving MD Anderson, two thoughts always burdened me. The first was that we were not alone, there is a massive cancer treatment industry and whatever our current situation, we were just another patient/caregiver pair on the spectrum of suffering. The second thought was always, "My God. Why?"
After each of the periodic diagnostic scans I would sit down and compose an email to send to friends and family, explaining the latest news, trying to be factual, trying to be honest, but not alarming. In truth, it was dire the day metastatis was confirmed. Our options were limited and, of the ones available, I think we made the best choices we could. We rarely received good news from any of the diagnostic scans. The only upbeat thing in my email was typically that we still had options, there were still other drugs, other trials. By early fall she had been through two clinical trials, two or three other 'standard' treatments, radiation to kill the cancer that was invading her spine, multiple biopsies, and months of unrelenting pain that could be medicated to a tolerable level, but never really went away. From the beginning Cindy never wanted to ask what the prognosis was. She didn't want to know, she didn't want facts to influence her hope or her effort. Dr. Saleem refused to answer me when I asked, always deferring to Cindy, so I stopped asking. Finally, in early October, Cindy asked the question and Dr. Saleem told her three to six months.
We had a Lehigh trip planned for Parent's Weekend later that month and we told Griffin in person. Cindy did not want me to share the prognosis with anyone, though I did share with some close friends and family who kept quiet about it until Cindy was ready to talk. Neil and Usha hosted all of Cindy's family for Thanksgiving and it was obvious she was losing the battle. I insisted, so we finally had the discussion with the Calhouns at the Christmas family get together. I don't think anyone was shocked. Her decline was pretty obvious, despite the brave face she put on. By January we were grasping at straws, seeking treatment at the
MD Anderson Targeted Therapy Center , which is basically just a last-chance, 'Phase 1 - first human test' research group. She never really got healthy enough to get into a treatment program. February and March were a blur of emergency room visits, infections, fluid in her lungs, short hospital stays and long, sleepless nights.
One Friday she was in really bad shape and after calling the doctor I forced Cindy to get in the car to go to the MD Anderson emergency room downtown. She didn't want to go. She was in pain and miserable, but I couldn't do anything to comfort her. She cried, until we got there, and then she got mad and uncooperative. They admitted her to the hospital. We spent Saturday getting tests and evaluations. The weekend staff, doctors we didn't know, were informative, but not especially compassionate. On Sunday they sent us home, saying there was nothing further they could do, and recommending palliative care, hospice, to be administered at home. At first, it was just to be every other day. By Wednesday, she was practically immobile, with no strength in her legs. She was on oxygen. I carried her to the bathroom. She slept. She complained. She was forcing herself to eat, but not eating much. By Thursday, the hospice nurse was recommending around the clock care. At the hospice evaluation on Saturday afternoon, the supervisor guessed she had 12 to 24 hours.
At 4AM Sunday morning I woke up, went to the kitchen to get a drink of water. Checked in with the hospice sitter who said there was no change. Cindy was sleeping in the recliner, the only place she had been comfortable for months, I kissed her on the forehead, told her I loved her, and went back to bed. I had no sooner put my head on the pillow than the sitter called, "Mr. Turner, things are changing." I woke the family that were staying with us and called the others at the hotel. Not long after, maybe 90 minutes later, she passed away, and around 8AM the cremation service came and removed her body.
I was so wrapped up in myself and my feelings, that I only vaguely recognized that the friends and family who had come to see her in her final days, were also suffering. I regret not noticing, not being able to help them, but I know they weren't expecting that from me. It is hard to see when you are in that moment. You think you are prepared, but there is no preparation that is sufficient. That same day, after everyone had left the house, my thoughts went back to all those patients I had observed at MD Anderson and I thought, "those caregivers will be in my place someday," but then I realized it wasn't just cancer patients. It's everyone. It was a strangely comforting thought. Others had done this, everyone else will, my grief was not unique. It did not make me special. It made me humble. What is my grief compared to all the grief that has been and will be?
I missed her terribly. Still do, though mostly at odd unexpected times, not like the oppressive, smothering grief of those first few weeks. I've spent the last several months trying to reconcile memories and dreams, to get to some sort of understanding about how to deal with the loss. I've been writing here. I've been taking care of myself physically. I've been talking to a wide variety of people. I am not delusional enough to think that I can understand it all. I just need 'some sort' of understanding, something of substance, something representative of the love and respect and time that we shared together. I know that whatever I come up with won't be complete, I just want it to be true.
Everyone says you can't put a clock on grief, but we do. We have to, because time is the only thing that heals, or at least makes the grief tolerable. In many ways I think that the grief process has been easier on me than on those who weren't along on the daily descent. I saw Cindy vulnerable, and afraid, and in pain, and hopeless, and helpless. I saw the suffering up close and how much it defeated her, a woman not accustomed to defeat. Yes, her family and friends and co-workers knew she was struggling, and I know they loved her through it. She loved them, too. But to the bitter end she worked to spare them the worst of it, until she just couldn't do it anymore, either physically or emotionally. That was her gift to us all, to be strong, to persevere, to maintain dignity, to live and die on her own terms. She made it as easy for us who remain as she could. It's up to us to learn from that for our lives going forward, and for our own future demise. She will always be my love, but she will also always be my hero. I can only pray that God will give me the strength and courage that my dear Cindy had in her life, but especially in her death.
