ALL THE TIME IN THE WORLD
A serial memoir by Jean Fogelberg
Living With the Enemy
Letters for Dan continued to pour into the Living Legacy site from his fans, encouraging him and thanking him for the music. At the same time, his website “sermon” was having an impact. Now and then we’d get emails, through our website or through the Living Legacy website, from men who had heeded Dan’s advice about getting a prostate exam.
Date: Mon, 18 Jun 2007 17:08:47 -0500
Subject: Good Wishes For DF
Hi Dan, just a hello, thanks for the music and memories, and continued good health to you. I have been a loyal fan since 1972 and would go to see you when you appeared at the Capitol Theater in Passaic, NJ and your other appearances in the NYC area. Your vinyl albums still get played regularly here , although they have become a little scratched up over the years.
Directly due to your diagnosis and advice from your website I reluctantly got my first prostate exam at age 58. I had no symptoms or trouble with my prostate that i was aware of. The Dr. found mine to be cancerous and the prostate was radically removed recently. The result of my first PSA test (post surgery) was zero.
Over the years you have given me a wonderful appreciation for your music and now the advice from your website has saved my life.
I wish I had the way with words that comes so naturally to you but I haven't been blessed with that gift. I just wanted to send you my best wishes, thanks for everything, and I pray for your continued health.
It was Dan’s only silver lining: knowing his predicament might spare other men this ordeal and add many years to their lives. I thought of the wives and partners who wouldn’t have to endure this terrible struggle and lose their men before their time.
During our monthly trips to Boston, we wandered, ate out, and shopped in between appointments and treatments. In Maine, we lived our busy lives while keeping in touch with our doctors via email. As Dan’s body declined, we dealt with each new or worsening symptom as a momentary interruption; a physical glitch to be overcome so we could get back to whatever plans we’d made.
Over the course of three years, we had gone from defending the gates at all costs, to reluctantly living with the enemy. An unspoken truce had been reached. We knew we would eventually lose this battle, we just wanted to go out on our own terms.
The email dispatches to our medical team were as informative as I could make them. Most updates went through Erika, our NP and Dr. Kaufman’s assistant.
Dan is doing very well, some pain in the left shoulder (opposite of the broken one) around the scapula area, but he's been wearing a sling the last couple of days and that seems to be doing the trick. A slight headache yesterday, but it's been windy and it may have been allergies, it's gone this morning. He did great on the trip to Colorado, especially considering all the sitting we did on the way out there.
All in all he is feeling good with a little fatigue, but we were doing a lot of sorting and such. Daily regimen: 2 Celebrex /100mg capsules, 1 Acetazolomide /250mg tablets, and 1/2 steroid /4mg tablets (he's still Puff Daddy - face and belly). Most late nights his lower back is sore so he takes 1 Flexaril and 2 Endocet (the Oxycodone doesn't do anything for the pain, even two tablets, so he's thrown them out), a couple of vodka/waters, and just before bed 1/3 of an Ambien /10mg. On days when his allergies flare up he does a couple squirts of Flixonase (which makes him a little spaced out) and flushes his sinuses. Eyes stable, digestion/BMs regular, balance good.
Hope you are having a great day,
Stress and physical wear and tear had begun wreaking havoc on my own body. Strangely, the worst outbreaks, shingles and hives among them, almost always showed up when Dan was off sailing. I couldn’t decide if the solitude was allowing space for my anxieties to express themselves, or if the stress of not knowing how he was doing every minute of the day was taking an additional toll on my immune system. I wasn’t doing any painting or photography; what energy I did have went into my website design business, which was becoming increasingly hard to keep up with. Pain between my shoulder blades, and lower back pain were frequent guests.
One day I was vacuuming the TV room in the basement because Dan wanted to watch a movie later. His rhinitis made him sensitive to dust so I had the canister vacuum, using its different attachments to go over every surface. I had just changed out one of the nozzles and was bending down to pick up the wand, when my back froze up and I fell to my hands and knees.
The pain of moving my legs was excruciating as I crawled to the bottom of the stairs. Dan was outside, but I knew he’d be back before long so I held still, hoping some of the swelling would go down. I knew exactly how this had happened. Dan’s back pain meant he needed help sitting up each morning in bed. Positioned by the side of the bed, I would hold his hands and pull sideways to lift him. I’d been doing this for a while, but lately my lower back had been complaining. Now I was paying the price for ignoring it.
I heard Dan come in the back door and called his name. He stood at the top of the stairs and said, “Did you call me?” The stairs turned to the right at the bottom, so he couldn’t see me. I said, “I’m okay, I just need you to get me...” I couldn’t lift my head, so I was talking at the floor. Hearing pain in my voice, he started down. When he reached the landing and saw me, he became alarmed. “Jeanie!” he cried, “What happened?”
I was immediately reminded of the time when, in my twenties, I had gone home to visit my parents in Lompoc. It was summertime and after an early dinner we decided to walk around the block together. When we were about six houses from home, Mom tripped on an uneven sidewalk edge and fell. It all happened in slow motion, and just before she landed on her hands, Dad cried, “Honey!” She was okay, her hands and knees were just a little scraped up, but the anguish in my father’s voice will always stay with me. I heard that same worry and fear in Dan’s voice now.
“I just strained my back,” I said, calming him. I told him what I needed and he hurried away, returning with a muscle relaxer and a glass of water with a straw in it. He put the pill in my mouth and held the glass so I could take a few sips of water to swallow it. Then he sat on the bottom step and kept me company while we waited for the drugs to dull the pain. After a while, I felt ready to crawl up two flights of stairs to the bedroom. Dan followed me all the way, giving the kind of inane advice you give when it’s the only thing you can give: “Be careful, go slow, take your time...”
Dan still needed help getting up in the mornings, so I took a tie-belt from one of his terry cloth robes and tied it around the leg of the opposite foot post. When he was ready to sit up, he’d grab the tie-belt in his right hand and I’d hold his left hand. As I pulled on the left, he pulled with the right. It was actually a much better system, since he was getting some weight-bearing exercise and I was lifting half the weight, from a better position.
A friend had told me about Pilates, and core strength made sense to me. So, once my back healed, I bought a Colleen Craig book and video and a 55 cm inflatable ball that looked like a giant pearl. The Single Leg Stretch was especially painful: holding the ball over my head, knees to chest, I had to extend first one leg, then the other. In the beginning I could only do three repetitions, my feet almost straight up in the air, before the pain forced me to stop. After a month I was doing 50 extensions, with my feet poised eight inches off the floor, and my lower back never gave out again.
Sometimes a new body ache would appear out of nowhere while I was cleaning house or doing dishes. Once I realized it was something that Dan had recently complained of, the ache would fade away. These sympathetic vibrations reinforced, for me, the importance of maintaining my own health and positive attitude. Surely, if I was tuning into his wavelength, Dan was tuning in to mine.
Back when the house was still under construction, we would visit the site after the crew had gone home. Entering Dan’s study entailed climbing through a metal scaffolding against the outside wall. I went first, then Dan stepped on a support and launched himself upward. He was wearing his sailing hat, and the bill obscured his sight so he didn’t see a metal bar above him. Coming up under the bar, he hit it, hard, with the top of his head. After I asked, for the third time, “Are you sure you’re okay?” he got annoyed. He said he was fine, but I didn’t believe him. I had a splitting headache.
We were in Boston one night, sitting in a small, dimly lit restaurant on Charles Street. It had been a long, hard day after getting some bad test results at MGH, and we were both frazzled. We had just placed our order with the waiter when I felt tears coming. No no no no! I fought hard to regain my composure, but it was like arm-wrestling a giant. Seated across from me at the little table, Dan could see I was struggling. Somehow, he always managed to appear calm and strong in public.
I motioned “I just need a minute,” and went outside, my napkin crushed in my hand. It was a quiet night and three doors down there was a shop with a recessed entryway. Huddling in the dark threshold, I put the napkin over my mouth and cried hard, silent tears of fear, sorrow, and rage. It usually took just a few minutes, then I could carry on, red-eyed but resolute.
Tears helped. This was a difficult acknowledgment for someone who prided herself on not being a “crybaby.” Growing up, I was an active, bike-riding, tree-climbing little girl, as were my two younger sisters. My mother had paintings to paint and meals to prepare, so she instigated a rule: “Don’t come crying to me unless it’s bleeding.” The natural conclusion: feelings and bruises aren’t worth crying over.
I’d always been an overly-sensitive child and it had taken years to master my tears. Now they were my only therapy. Alcohol and anti-depressants didn’t work for me; when I felt like my heart and brain were going to explode, finding a quiet place to cry was the only way to relieve the pressure. Even as I came to recognize tears as nature’s built-in pressure gauge, I still felt ashamed and weak for shedding them. After all, Dan was the one with the cancer; if anyone had reason to cry, it was him. I’m sure Minstrel was his quiet place, because he rarely cried in front of me.
Now and then a friend would tell me, “You’re so strong! I just don’t think I could handle everything the way you do.” Their praise always surprised me, but it never failed to give me a much-needed boost of confidence, especially the words, “You’re so strong.”
To the rest of the world, Dan and I maintained our facade of poise and strength. We rarely showed our emotions during a consultation with Dr. Kaufman or Erika; we just asked questions and nodded our understanding. At one point, our calm demeanors may have led them to wonder if we understood the gravity of our situation. We’d seen the scans, and we knew the cancer was everywhere, but Dan said he believed the pain in his lower back was due to a recent fall. I addressed this in my next email to Erika:
July 16, 2007
First of all, you never have to apologize or explain if it takes you a while to get back to us. We know how busy you are, and can only imagine how intense your job is.
Are you familiar with the movie "Moonstruck"? In it, when Cher tells her mother she doesn't love the man she's engaged to, her mother tells her: "Good. Cause when you love 'em they make you crazy. Because they can." Dan is so stubborn, and his will is so strong, it sometimes makes me crazy. But the thing is, that is what keeps him going. It's how he's accomplished what he has in his life: his belief that he could do it. But as strong as that self-belief is, it is also very fragile, and I am constantly conscious of that. If he believes this back pain is an injury, and that it will get better and he will be able to sail this season, then most likely that will happen, and I will do everything in my power to facilitate that, as I know you will too. You saw him walk out of that hospital after looking like he was going to die, that's his incredible will.
When the doctor covering for Dr. Kaufman came to our hospital room one day, Dan told him how grateful he is to you and Dr. Kaufman for giving him these last two sailing seasons, that he hadn't thought he'd have. The doctor talked about Taxotere, and told Dan "We'll see if we can't get you one more sailing season." You know, that pissed Dan off - that the man would have the nerve to limit him to ONE season! That's how he thinks. It's what we love about you and Dr. Kaufman - you have never set limits on us, you go with the flow and improvise, and make judgments based on us, not some formula or past cases.
I just want you to know that we both fully understand the prognosis, we've heard every word you've said about the scans, bones, blood work, and progression of the disease (and please forgive me if I interrupt you, it's terribly rude and I berate myself later every time I do it). We've cried many tears together, we talk about death, and a lot of the time we're really scared. But focusing on the positive, and keeping our sense of humor in the face of such a daunting life challenge is how we cope every day. We're not in denial, we're whistling in the dark. And you and Dr. Kaufman and Peggy, Marilyn, Carol, Heather, Linda, Maria, and the rest of your wonderful staff are lights along our path and we are so grateful you are there for us.
July 17, 2007
Jean, your note is so beautiful. I thank you so much for your insightful and kind words. I am very aware of Dan's will and your will too. You are an amazing couple and we understand what makes Dan tick. We will continue to care for you both in the very same way we always have.
Dan’s back did indeed “get better,” and the warm breezes of July and August propelled him and Minstrel up and down the Reach. Sometimes I went with him and sometimes he sailed alone. Any time he single-handed, he always remembered to call me at 10pm, to let me know he had found a safe harbor for the night. Actually, he frequently called a few minutes before 10pm, when I was just about to learn who the killer was on Law & Order.
Our favorite movies provided a wonderful escape from cancer, but television proved a bit more risky. One night we were watching a program where one of the company executives was out of the office for medical reasons. A few of his co-workers stood around talking, and one of them asked what was wrong with him. “Prostate cancer,” one man said, softly, and the looks on the other’s faces said it all: “He’s a dead man.” It felt like one of them had reached out of the TV and slapped us.
We had been Law & Order fans for years, and were shocked when an episode in December of 2004 ended with a memoriam for Jerry Orbach, the actor who played detective Lennie Briscoe. “What happened to him?” we wondered. Looking him up online, we learned that he had died of prostate cancer. We were just eight months into our own battle with the disease, so it was devastating news. Reading further, we learned that he had been diagnosed ten years earlier. Ten years! Our initial dread turned to hope.
Reading had been my bedtime sleep-aid for many years, but it was becoming increasingly hard for me to enjoy books. My mind wandered and I would have to re-read passages multiple times before absorbing their meaning. Within minutes, whole pages were forgotten. So, I started watching television in bed at night. I’d watch Law & Order from 9pm to 10pm. The last four minutes of the show were usually reserved for the courtroom scene, where a confession or revelation was dragged out of the person on the witness stand. Adding to the suspense was the knowledge that Dan might call at any moment, interrupting the big reveal.
I mentioned this to him once or twice, but he forgot. It was one of those nitpicky little irritations that occur whenever two people live together. I provided my share of those: I habitually left drawers partially open, and sometimes entered rooms too quietly, scaring Dan “to death,” he said.
So, he called ahead of schedule sometimes. There would be Law & Order reruns for a hundred years, so I let it go. He ignored the open drawers most of the time, and I tried to remember to make noise when approaching a room he was in.
We were in the kitchen one day, making lunch and talking. I was reaching up into a cabinet, my hair falling down my back in a braid. From across the room, Dan said, “You are so lovely.” I turned and looked at him for a moment, acutely aware of the toll the last three years had taken on me. Smiling wryly, I said, “And in her eyes I wasn’t sure if I saw doubt, or gratitude.” We both burst out laughing, not just at the appropriateness of the quote, but in wonder at the incredibly insightful lyric, written by a young man in his twenties.
If you live with the enemy long enough, it becomes like a big crack in the ceiling. Visitors glance upward warily, but you carry on, accustomed to the threat hanging over your heads. You love each other and lift each other and forgive each other. You laugh and cry, and celebrate every ordinary and extraordinary moment, because if you waste your time waiting for the ceiling to come crashing down, you'll miss all the good stuff.
Posted May 22nd, 2021 Copyright ©Jean Fogelberg 2021