ALL THE TIME IN THE WORLD
A serial memoir by Jean Fogelberg
After telling our parents about the cancer diagnosis, we wrote emails to a few close friends. We revealed what we hadn’t told our parents: that the doctor in Durango had done a biopsy and a bone scan, and the resulting diagnosis was advanced prostate cancer. This meant that the cancer had moved beyond the prostate. It was in Dan’s bones, hence the back pain that sent him to Dr. Jim. We promised to be in touch after our up-coming appointment with the surgeon in Boston.
On June 14, 2004, we woke in our room at The Ritz Hotel in Boston, nervous but hopeful. We were anxious to get started on treatment and glad to be meeting with an eminent surgeon who would be able to tell us how to proceed.
The Ritz was on Arlington Street, directly across from the Boston Public Garden, the first public botanical garden in the United States. Whenever we found ourselves passing through Boston on tour, we always made time for it. This morning we decided to cut through the garden on our way to Massachusetts General Hospital.
We entered by the George Washington statue and stayed on the paths following the left side of the four-acre lagoon. Swans and ducks swam lazily and dozed on its grassy banks. Fat, fluffy squirrels darted up and around the huge variety of trees, brazenly flirting with anyone who might have a morsel to share. Lovers and friends sat together on the grass or on blankets, and students rested their heads on backpacks and read books or dozed in the sun. As we neared the corner of the garden, at the intersection of Charles and Beacon Street, we passed people posing their little children with the Make Way for Ducklings bronze statues. Crossing to Charles Street, we strolled the six blocks of shops and restaurants, making note of which ones to explore later.
That walk would become our ritual; a lovely start to a day of tests, needles and x-ray machines. We always tried to get afternoon appointments so we could take our time wandering and window shopping. Dan was convinced our Boston strolls contributed to better blood pressure numbers.
Right beside MGH, the historic Charles Street Jail was being renovated. The hospital had purchased the run-down property and was now transforming it into a luxury hotel, just steps from the Yawkey Building, where we would be spending a good deal of time. It looked cool, and we hoped we’d get to stay there one day, but it wasn’t slated to open until 2007, which seemed a world away.
Entering the main hospital building, we got directions at the front desk and rode the elevator to Dr. McDougal’s office in the Wang Building. I don’t remember anything about the office, or the room we met the doctor in. But burned into my memory is Dr. McDougal, in his white coat, looking through the folder of medical records sent from Pagosa Springs and saying, “So, I see here that, back in 2002, you had a PSA level of 12?” When we didn’t answer, he looked up from the file. It was obvious that this was news to us. We looked at each other in shock, and then back at the doctor. “What??”
“You didn’t know that?” he asked, calmly. “No,” we answered, our minds whirling in a thousand different directions. The rest of the meeting is lost, but we came away understanding that, at this point, surgery would be like closing the barn door after the horses were out. We would have to seek treatment in a different department of the hospital’s oncology center.
All night we wracked our brains, trying to imagine how Dr. X could possibly have neglected to make us aware of a PSA number three times higher than the “safe” number. We tried to give him the benefit of the doubt, spinning scenarios involving misplaced office directives and undelivered messages. But no matter how we spun the story, it always came down to the same question: when he didn’t hear back from Dan, why didn’t he follow up?
We knew we would never learn the truth. It was a small town; friends and colleagues would cover for each other, out of loyalty or fear of litigation. The one thing we did know for sure was that it had been a terrible accident. No one had purposely withheld information to make Dan sick. The person who leaked the diagnosis wasn’t trying to make life harder for us; they were someone who needed to prove how important they were. It was pointless to spend any more time or energy on it - the damage was done and nothing could change that. We had to look forward.
Of course, we would always wonder when the point of no return had been reached. Dan had missed his annual checkup with Dr. Jim in 2003; would that have caught the cancer in time, or was it already a wildfire, raging through his body? He would grapple with his what-if’s and regrets, as I would grapple with mine. After all, I was the one who called the after-hours number that night. If I had stepped back and allowed Dan to endure one night of fear and worry, he probably would have seen Dr. Jim the next day, instead of Dr. X. I will always wonder if that act of kindness sealed our fate.
Every partner and caregiver has regrets; it’s easy to spot your mistakes once the smoke has cleared. You don’t walk away from a battle like this without scars, all you can do is remind yourself that you got them while fighting.
Three days later, we returned to the Yawkey building for an appointment with a group of genitourinary cancer specialists who would, if we agreed, become our “team.” This was standard practice at the hospital: to put together a team who would work together to tailor a treatment plan for each patient. We were led down a hallway to a small waiting room and we sat in two chairs facing the door.
After about 20 minutes, a man hurrying down the hall happened to glance our way and came to a sudden stop just past the door. He took a few steps back, and then came through the door. He was 70 years old, slight of build, with white hair and long, elvish ears. Something about him put me in mind of Yoda, and I remember thinking, “Thank God you’re here.” He introduced himself as Dr. Kaufman, and asked us to follow him.
We were seated in a narrow room with eight or so chairs arranged in a circle. Within a short time, most of the chairs had people in them. There was Dr. Kaufman, head of oncology; his assistant, Erika Barrett, NP; a radiation oncologist; a psychiatrist and end-of-life care authority; a clinical social worker, and a few others we wouldn’t see for a while, if ever.
The team, led by Dr. Kaufman, discussed our treatment options. I took notes, but it all looked like a foreign language when I read them later. As we listened to these men and women, all top professionals in their field, we wanted so much to believe in them, but our “Marcus Welby, M.D.” ideas of the medical profession had taken a big hit.
When they asked if we had questions, Dan asked something. Then I asked a question that sounded something like: “Once we start the blah blah blah, how often will we blah blah?” The team looked at each other and smiled, and I thought, “Oh no, what did I say?” Seeing my perplexed look, one of them explained that patients with a strong support system fared better than those who felt they were fighting a disease on their own. The fact that I’d said “we,” instead of “he,” told them I considered the two of us a unit.
At the end of the meeting, Dr. Kaufman told us to talk it over and decide if we wanted to be treated at MGH, with him heading our team.
We had come to Boston for a highly-recommended surgeon who wouldn’t be involved in our case now, so we had to shift gears. MGH was a respected hospital, but Dana-Farber was in Boston too, and it had a respected cancer center as well. Now, more than ever, we understood the importance of having a doctor you could rely on. It was literally a life and death decision, and we were feeling a bit ill-equipped to make it.
Our friends, writer Katherine Hall Page and her husband, Alan Hein, lived near Boston, and had offered us their support. Alan was a Professor of Neural Psychology at MIT and had worked with many doctors in Boston, so he had the experience and inside knowledge that we lacked. Also, he had counseled many others who were at the crossroads of treatment. We called Alan and he agreed to meet with us when he got off work.
Back in our hotel room, I made smoothies. We’d stocked our small refrigerator with soy milk, fruits, and veggies, and our suitcases had carried the bags and bottles of cancer-fighting nutrients and supplements from home. We were exhausted, and laid down for a nap.
When I woke up, we had less than an hour before Alan was due to arrive. The bathroom was on Dan’s side, and as I walked around the bed I saw that he was awake. He looked like he hadn’t slept at all. When I came out of the bathroom, he was sitting on the edge of the bed. He looked lost, and bewildered.
“I don’t know if I can do this,” he said.
I knew he wasn’t talking about the meeting with Alan.
The pain dropped me to my knees. Dan had assured me many times that we had all the time in the world; now he was considering leaving me, and the world, forever. Moving between his knees, I put my arms around his waist and fell apart, crying into the side of his shirt. The only other time he’d seen me abandon myself to grief like this was the day Buckaroo died, and it caught him off guard.
“You have to try,” I pleaded, “Please, try!”
He put his hands on my shoulders and stroked them, to calm me. After a while I leaned back and looked at him. “I can’t do this by myself,” I sobbed. He knew I wasn’t just talking about the cancer. We had built this beautiful life together, and I couldn’t imagine living it without him. I put my head down and cried big, selfish tears, just for me.
From the moment we hit that ledge, I took charge, boosting Dan’s morale, doing research, cooking with super foods, and creating nutrition schedules. That had been a positive thing in those first days, while he was trying to catch his breath. It was good for me too, giving me something constructive to do and helping me to feel less helpless. Dan had the heaviest burden: he was the one carrying the cancer. More than anything, I wished I could relieve him of that burden. If I could carry even half, I wouldn’t have this gnawing feeling that, no matter how close we were, I’d never really know what he was going through. So I took on everything, in an effort to lighten his load. But once Dan began to get back on his feet, it was too much.
I hadn’t realized that, in taking on all the responsibilities, I had taken all the power as well. In hiding my doubts, fears, and tears, I’d made his own doubts, fears and tears feel like weakness to him. By carrying him, I was killing myself with exhaustion, and him with inertia. If we were going get to the top of this mountain, we would have to make our way together.
“Okay,” he said softly, petting me, “okay.” Looking up, I saw tenderness, guilt, doubt, and a glimmer of resolve. Pulling strands of hair away from my wet face he promised, “I’ll try. For you.”
By falling, I’d given him the chance to catch me, and reclaim his power. From that day forward, Dan kept his promise and we made the climb together. I rescued him, and he rescued me, and somehow we managed to not fall at the same time.
Alan would be arriving shortly, so we hurried around, getting ready. I pressed a cold washcloth to my face, but it was no use. When he arrived, we sat in the little living area, Alan on the armchair and Dan and I on the couch. Alan and Kathy were two of the kindest people we knew; the kind of friends you could trust, and count on, in any crisis. Now, with his calm demeanor, Alan looked at us and saw what anyone would have seen: Dan, looking handsome and composed, and me, with my splotchy face and red, puffy eyes.
Assessing Dan, Alan praised him, noting that he seemed to be holding up very well under the pressure. Looking to me, he said that I didn’t seem to be doing very well. It was so ironic, I almost burst out laughing. Thank goodness I didn’t; he would have thought I was going ‘round the bend.
We brought Alan up to speed, telling him about the numbers, meetings, and suggested treatments. He let us know that everything the MGH team had suggested was standard protocol. That felt good. But our biggest quandary was whether we should commit to Dr. Kaufman, or meet with other doctors, at other hospitals, before deciding? We wanted to jump into treatment right away, but we wanted the right person making those treatment decisions for us.
Alan told us that MGH was one of the best hospitals in the world, and he’d asked around about Dr. Kaufman, who got high marks from every medical professional he had contacted. It was just what we needed to hear; we made an appointment with Dr. Kaufman the following morning.
The next day, June 19th, we had a wonderful treat: lunch with Irving. Dan’s old friend met us for lunch in the lounge at The Ritz. One of the most powerful men in the music business, Irving carried his ever-present Blackberry, but muted it and set it face-down on the table, so he could give us his undivided attention. Sounding confident and self-assured, Dan outlined everything we knew at that point.
I always noticed a little shift in Dan when he was with Irving; he went from Sheriff to Deputy. After “discovering” Dan in Illinois, and moving with him to Los Angeles, Irving had propelled both of their careers into the stratosphere. The respect went both ways, but Dan looked up to Irving, like a wise big brother who would always have his back.
At the end of lunch, Irving checked his Blackberry, which was bursting with important messages. It was time for him to fly back to L.A. We said goodbye and promised to stay in touch and keep him informed. After hugging us both, he strode away with the phone to his ear, making decisions that would alter careers and change the music business.
A few days later, I sent an email to our closest friends and family, outlining the treatment, as we understood it at the time, and our plans. (Casodex is actually a hormone-based chemotherapy drug.)
June 24, 2004
Hi all -
Just a note to let you know that Dan and I are sharing the merlynsgarden e-mail address, so he will be reading your emails too, usually before me, so you can address us both.
We started the Casodex hormone therapy a few days ago, which is basically a female hormone that will inhibit Dan's testosterone production, thereby lowering his PSA levels. So far there seem to be no side effects, although it can cause hot flashes, etc. This drug will also prepare his body for the chemotherapy injections, and make the bone pain these injections can cause less painful. I just started my third period in as many weeks, so we have decided we are entering menopause together.
We are going to stay in Boston for another week or so - it's the first time we are going to have time to enjoy the city, rather than passing through on tour. We try to spend some time in the public gardens every day, which is right across the street from the hotel. The ducks and squirrels are fearless, and just basically ignore people unless they have food in their hands.
The hotel provided us with a small fridge, and there is a Whole Foods near us so we are able to get healthy foods. Amazing how easy it is to choose what to eat from a menu when you are not eating sugars and fats - lots of fish and veggies. Then we stroll back to the hotel and have fruit for dessert in our room. I'm missing having a kitchen to make our healthy soy meals in, but we will have that again soon enough. What I DO like is the access to ANYTHING. I read that weight bearing exercise is great for helping bones to heal and stay healthy, so I just popped out this morning to the sports store and bought a couple of 5 pound weights. There is also an exercise room here with elliptical machines, treadmills, etc., so we are able work out and eat well in the hotel, AND we get the New York Times every morning. Civilization!
Our doctor is the top guy in his field at Massachusetts General, and we have the top surgeon, radiologist and psychiatrist on our team, all Harvard Medical, and all consulting with each other, so we feel very confident that we are getting the best advice and care possible.
We know you want to help, and the best you can do for us right now is to send us newsy emails, telling us what is happening in your part of the world, to give us something pleasant to read when we get up. Evelyn is in Bali, and her weekly updates have been manna.
Jean and Dan
People in the movies ask, “Be straight with me doc, how long do I have?” We never put that question to Dr. Kaufman and, to his credit, he didn’t presume to give us a time limit. We knew from our research that thirty percent of men undergoing treatment for advanced prostate cancer would survive for five years. But we didn’t know when Dan’s cancer had started, so we didn’t know how long it had gone untreated, or how much time we’d already used up. He was relatively young at 53, but that actually worked against him, since prostate cancer is generally less aggressive in older men. His current PSA level was through the roof at 364. No matter how we added it up, the math was against us.
To me, the best thing we had going for us was Dan himself. The life force was strong in him, and his will was indomitable. I truly believed, as many of us did, that if anyone could beat this, it was Dan.
In two weeks time, we had an appointment to get the first injection of Lupron, the hormone-modulating drug. Until then, we couldn’t wait to get to Maine, to see what progress had been made on the new house. It wouldn’t be finished until the end of August, so we’d have to find a place to stay for a couple of months. Finding accommodations on the coast of Maine during the height of summer would be a challenge, but Dan’s boat, Minstrel, was always an option.
The big decisions were behind us. We had a team and a plan of attack. For the first time in weeks, it felt like we could take a breath. As we headed north along the coast, all the familiar landmarks and towns appeared especially beautiful and quaint. Crossing the border, the sign read, Maine: the way life should be. We’d passed that sign so many times, but this time it gave me pause. Everything in our world had changed. And until we defeated this cancer, life would never again be as it should be.
We were heading into uncharted territory, but we believed in each other and our sails were full of hope.
Posted February 27th. 2021 Copyright ©Jean Fogelberg 2021