Michael
By July, I was anxious to learn about my cancer but, compared to just a month prior, I was already doing much more to help myself. I was drinking large amounts of water. I was skin brushing, allowing my skin to breathe and detox. Using the rebounder to stimulate my white blood cells and to activate the lymphatic system, injecting iscador every other day, and doing colonics. Each action both helped me physically and boosted my confidence.
Our young and fresh love was still in the air. Since I had to wait to get a cystoscopy for some weeks, I decided that I wanted to take Marilu to see my office in England and to visit my agents in Scandinavia. Marilu and I flew to London in early July. I was anxious that maybe I should be doing something other than vacationing in Europe, that maybe I should be doing some treatment or other, but the new urologist, Dr. Mee, had assured me that I could wait from late May until mid-July before another cystoscopy, so I went along with my previous travel plans. Despite Dr. Mee telling Marilu, “Now is the time to enjoy something like a trip to Europe . . . who knows how many more trips you can take?”—which Marilu told me one day while teasing me—she had faith that I could beat this disease, even though no one else seemed to. There was another reason why she told me something so terrifying: to keep me on point and moving away from my previous normal existence. Her father taught her that people should be blamed for their sicknesses, not pitied, and she knew that, in many ways, I had brought on this cancer with my toxic habits. And so it was up to me to reverse this disease by moving away from the behaviors that had resulted in advanced cancer in my bladder.
At this time, so early in our relationship, I was still trying to impress Marilu—to show her that I was successful and could keep up with her. To that end, I had booked rooms at the Savoy Hotel in London. I wanted to treat Marilu in the manner to which she was accustomed, as I had promised to on one of our first dates. She had been at the Savoy years before, and so I thought we should go back there as a couple.
As soon as we arrived in London, we went straight to the hotel. Marilu did not like the first room we were given, and so, late at night, the bellman moved us to another. In my previous life, I would never have insisted on changing a hotel room, but Marilu is not one to just accept the status quo without question. Unlike me, she’s always ready to advocate for her position, and in the most charming way possible (at least most of the time), which made her an effective caregiver as we navigated the complexities of the healthcare system.
The next day we walked on the Strand and hung out in Covent Garden. I tried to act natural, to avoid thoughts of self-doubt and panic, but it was difficult. After two years of failed examinations I finally knew the cause of blood in my urine, but I was not doing anything about it except taking a vacation! And I had just been in Costa Rica! It seemed bizarre and surreal.
But on the other hand, I was with Marilu and our relationship was really good. I was just then learning how to eat like a vegan. In England this can be difficult, but we found a place called Food for Thought, which was one of my first regular vegan spots. I loved the food and the atmosphere. It was a communal table arrangement with all sorts of breads and soups and many hearty meals. The more I ate this food, and the longer I went without dairy and meat, the stronger I became. Even in England, we could eat the way I needed to eat, the way Marilu had eaten for so many years. I soon became used to ordering salads in hotels, veggie dogs at Pink’s, and penne arrabbiata (but no cheese)! Quite a transformation in eating habits.
After flying from London to Copenhagen, we stayed in an old-style hotel in the center of the city. I had been in Copenhagen many times when I had worked for a Norwegian ship supply company. We had a wonderful time walking the streets of the old city and spending the evening at Tivoli Gardens. My partner from England, Jack, and his wife, Gail, met us in Denmark. We went to Gothenburg, Sweden, and then on to Oslo, Norway. Walking the streets of Oslo at night took me back twenty years to my days as a shipping executive based in Rio de Janeiro. So much had changed—and was about to change—in my life.
We flew back to the U.S. and I finally moved on to the next step of my cancer journey, the first cystoscopy with my new urologist. This time I went with Marilu to Cedars-Sinai and checked in at some ungodly hour in the morning. Marilu and I were so tight by then, a true couple. These four months we’d been together had gone so fast, and while much had changed in my lifestyle, my campaign against the cancer had not even really begun. Marilu held my hand as they administered the anesthetic and I soon faded into oblivion.
As I lay groggy in the recovery room I again was surprised with the results of the examination. Not only did I have bladder cancer with the stalk-like papillary tumors, but I also had carcinoma in situ, which means cancer on the site. In the case of bladder cancer it is a more rare and dangerous version of the disease. It is harder to detect than the papillary tumor type, and perhaps for that reason, the other doctor missed it. It is considered much more aggressive and dangerous. The pathologist also staged my cancer, which means he calibrated the stage of advancement it had made. It was between stages 2 and 3, an advanced stage but apparently a cancer that was still contained in my bladder, one that had not invaded the muscle walls or metastasized outside the bladder. The staging was a bit speculative because there was really no way to know if the cancer was contained in the bladder or not. With the stage of my cancer set I realized how far I had let this cancer go before I did anything. I was near to stage 4 bladder cancer, which is almost invariably treated with removal of the bladder and the prostate, followed by chemotherapy. The conclusion: I was in big trouble!
For new cancer patients to learn the vocabulary of their disease is a process fraught with anxiety and panic. The patient is faced with a diagnosis that is scary enough, but added to that, he probably has no clue what the doctor is talking about. Squamous cell? Non-small cell? CIS? Or a CT scan versus CAT scan versus MRI? How exactly does metastasis work? How does the cancer spread? Is it like a virus, like a growth, like an infection? How does a cancer kill a patient? Is it a slow rot from the inside, or a catastrophic collapse of the organs? How does it feel? Does it hurt? How do I know when the end is near? Can pain be my guide? Or am I left to the mercy of the doctor, who may or may not know what to do, or care?
The patient, sick and scared, must also learn a new vocabulary. Being forced to learn this dreaded language of acronyms, obscure Latin, doctors’ names, protocols, procedures, regimens—along with the resections, dissections, surgeries, cystoscopies, biopsies, blood tests, urine tests—is a frightful task. A strange combination of high school chemistry and nuclear science is used to treat cancer. No one has all of the answers. Being lost in the Tower of Babel, which is what a modern hospital is, is a big part of the experience of being a new cancer patient. No one wants to follow you down this corridor toward the cancer ward, the chronic disease future, the death row where they speak in weird tongues. And yet, there you are—alone with your fears and worst thoughts, unable to pick up the jargon quickly enough to save yourself.
Or so it felt. But I had Marilu in my corner. I could look in her eyes, hold her hand, and know that everything would come out okay. She had told me that we would make this work, and we would, even if it came down to the part with the pump! She would learn what I could not, she would ask the questions I did not, she would find a way where I might get lost. Knowing I was not alone was such a blessing. If I had not made that call in February, if I had not been ready to make a commitment, if I had gotten diagnosed before I had found my way to Marilu, then I would have been in this predicament alone. The easy answers would have then seemed more attractive, the return to normal more soothing, and I would have been lost forever.
Even though Marilu was with me every step of the way, it did not mean I went without moments of doubt and pain. I wanted so much to be strong for her, to not complain, to not make it more difficult for her. This was silly, as our love was too great at this point to be weighed down by disease. She wanted to be there for me, so I had to learn to let her all the way in. When she told me that we would make it work, no matter how mutilated I might become, I knew her love was there for me. But still it took me months to listen to my heart and allow myself to give in all the way.
With the results of this cystoscopy in hand, we consulted with Dr. Mee on a course of treatment. The standard treatment for bladder cancer, BCG, which is known as an immunotherapy, has been used for more than thirty years to treat superficial bladder cancer with great success. Immunotherapies are not chemotherapies, though many times laymen discuss them as if they are the same thing. Chemotherapy is given to cancer patients as a systemic treatment to stop the spread of cancer in the body while also treating specific tumors. Chemotherapies are chemicals that have been shown to be effective in killing cancer cells in tumors and that are traveling in the body through the blood or lymphatic systems. Immunotherapies, on the other hand, are treatments designed to imitate a viral attack on an organ, thereby stimulating the immune system to attack the virus and by extension to attack the cancer cells in that organ. BCG is a form of bovine tuberculosis; by injecting it into the bladder, the immune system focuses its attention on the bladder and in theory destroys the cancer cells.
Marilu
There is a routine you get into when hanging out in a hospital waiting room. You can tell the newbies with their summer clothes and lack of sweaters, books, comfort food from home, and phone chargers. We veterans always come prepared for the long haul because we’ve learned the hard way that there’s nothing worse than a protracted stay in a waiting room without the usual creature comforts and necessary supplies. You can spot the different combinations of families as they homestead around the room while waiting for postoperative news from their respective doctors. Each time the door marked Hospital Staff Only opens, you can feel the collective gasp as the various family groupings freeze, holding their breaths for a second, thinking, Whose doctor is this? What are they saying? Is it good news?
The news is always obvious, even when you can’t hear what the doctor has said to the alpha person in each group. Over my years of observing waiting room results, I’ve seen people do everything from applauding to screaming to fainting to flailing. I remember when my father died from an acute heart attack during a Christmas party in our home, my mother and I rode in the ambulance to the hospital, but I knew he was already gone. We pulled into the emergency entrance, where they rushed him in and worked on him for a few minutes before coming out to tell us, “I’m sorry, that’s all we can do.” The moment was surreal. When my two older sisters arrived, one of them broke down and the other one smashed her hand up against the wall with such force that she almost needed stitches. You never know how people will react to hearing good or bad medical news.
The first time I sat vigil in the large Cedars-Sinai waiting room, I was wearing a summer dress and freezing. But now, for Michael’s first cystoscopy with Dr. Mee, I wore Hard Tail workout pants and a sweatshirt, not only to keep warm but also to be able to do my mall-airport-hospital power-walking-the-halls for exercise. No reason not to multitask my health, especially when, as the caregiver, I couldn’t afford to get sick. It was all about staying the course, keeping the faith, and making sure Michael got the best care possible, including my staying totally healthy.
I didn’t know what to expect that first time I waited for Dr. Mee to tell us whether or not the prognosis from Michael’s urologist Dr. Paul was legitimate. Michael’s doctor hadn’t seemed very thorough, so I was not surprised when Dr. Mee came out into the waiting room and said, “You guys were right. It looks like he has CIS. We won’t have a definitive answer until the pathology report comes back in a few days, but I’m seeing something besides the inflammation from the last cystoscopy. I didn’t think it would be the case based on the doctor’s report, but it looks like CIS. I’m glad we went in. Somehow you knew.”
The interesting thing about a diagnosis is that the worst day is the first day. After that, it’s just putting one foot in front of the other as you figure out what to do. Both Michael and I are the type of people who want to know everything—the good, the bad, and the ugly. Whatever it is, bring it on. Tell us everything so that we know what we are dealing with. Spare no detail, let us know the whole truth and nothing but. Then we can decide our course of action based on all the facts. You can’t stay on top of a protocol unless you’re open to hearing every opinion and willing to read every pathology report. I’ve always been from the school of “knowledge is power, and once you know, you can’t choose not to know.” Michael makes jokes now about not being that kind of person before we got together, but I don’t think that’s true. He seemed only too willing to hear everything, which is much harder for the patient, because, let’s face it—it is his or her life that’s at stake.
While we waited for the lab results confirming Dr. Mee’s professional observation that Michael did indeed have CIS, the plan was for him to start the first of six full-dose BCG treatments within the week while his bladder would be most receptive to the treatment. The days following Michael’s July 24 cystoscopy were filled with as much real life as possible, plenty of research and praying and driving Nicky and Joey to and from the Marlborough School for their summer program. Taking everything from art to tennis to comedy to dance, the boys would spend from nine until three there every day while I sat in front of a computer learning as much as a could about bladder cancer. Never one to look only at the first page of search results, I gravitated toward the more obscure health-oriented sites that didn’t have the budget to advertise. By reading anything and everything and being able to cross-connect a lot of varied and often opposing information, certain patterns begin to emerge.
Nicky and Joey’s final performances at Marlborough were on the afternoon of July 29. I was sitting in the audience of Nicky’s dance show when my phone rang and I was asked to hold for Dr. Mee. With my heart pounding and the curtain about to rise, she came on the line and explained that she had tried to reach Michael, but he wasn’t answering his cell. She knew she had permission to tell me that the lab results confirmed that Michael did have CIS and it was worse than we had originally thought. She said, “Please have Michael call me tomorrow,” as the lights went out and the curtain rose. I felt sucker punched in the stomach as the blood rushed to my head and I burst into tears. Then the music started and eighteen little girls began their hip-hop dance, and through my tears, I began laughing with joy and pride as I watched my nine-year-old son—the only boy up there—take centerstage and do his Justin Timberlake–best as the star performer. The girls were screaming like he was one of the Beatles, and I couldn’t help but feel, once again, that everything would be all right. Life is yin and yang, the good and the bad; it goes on, and Michael will be part of it.
Michael
The standard protocol for BCG is to inject it using a catheter into the bladder once a week for six consecutive weeks. To put it bluntly, it feels like swallowing a razor blade, and then pissing it out—it hurts! And no general anesthetic! First I had to lie down on a table with clinic paper covering my private parts. The nurse then painted my penis with a local anesthetic (not a very effective one, I might add) and clamped it. Next the nurse pushed the catheter in; a catheter is a long, plastic tube that goes into the head of the penis, then tickles past the prostate (not as fun as it sounds), and finally arrives in the bladder. The nurse squeezed thirty milliliters of the BCG solution into my bladder. The patient, me in this case, must hold the solution in the bladder for two hours, lying in various positions like a rotisserie chicken while the BCG works its magic. After this ordeal I was allowed to finally get up and urinate, and believe me when I tell you that never has a piss felt so bad and yet felt so good! By this time the bladder is shriveled up by the acidic action of the BCG and irritated to the point that I felt sick. And best of all, I’d get flulike symptoms, which took several days to pass, as well as painful urination that went on for days.
After all of this, one week later, the process began again. After the six treatments, there follows a month of rest, and then a cystoscopy to assess the effectiveness of the treatment. The month-long wait is so that the inflammation caused by the BCG has passed to the point where the examining doctor can see the tissue and assess the state of the cancer.
Around this time, I began to frequent a website called the Bladder Cancer Webcafé, which was a truly great website now gone dormant. Even if the Internet were not good for anything else, supportive online communities would still make it worthwhile. Thousands of sufferers and caregivers were given a forum where they could ask questions, share experiences, and learn to deal with their disease. When I joined this community, I was already beginning my new life and, as I read the posts each night, I saw how people differed in their approach to disease. Many of the people were persuaded by their doctors and their personal inclinations to seek easy answers. They would want the doctor to cure them, which invariably meant to cut out the cancer. Doctors across the country, many as misinformed as my first urologist, were urging patients to have their bladders removed to get rid of the cancer. As if the bladder is just some disposable sack that holds urine. As if each vital organ in the body does not perform a multitude of functions that make it nearly irreplaceable. As if the body is not an organism, but rather a collection of parts that can be discarded and replaced on a whim. These doctors are as foolish as their patients; together they destroy not only the lives of the sick but of the loved ones left behind.
I read about patients on the website who would be diagnosed with stage 1A (the earliest form, nonmetastasized bladder cancer) rejecting any treatment and insisting on having the offending organ cut out. And the doctors were not only obliging but also encouraging them! After a while, it became clear that many doctors were motivated by greed and aided by their own stupidity. To my eye this is criminal, but I guess it is really just negligence. As determined by many recent studies, many cancer patients in the United States would be better off never being diagnosed. And if they are diagnosed with cancer, they might be better off doing nothing rather than going to a conventional doctor for treatment. It says a lot that the vast majority of doctors would not go in for the conventional cancer treatment if they were the patient; they know how futile it is to cut, burn, poison the body to remove some errant growth whose cause can itself be treated.
Many patients on the website found love and encouragement and the strength to confront their disease and the difficult choices needed to find a cure that worked for them. They found information on how to deal with the effects of BCG, how to transition to healthier foods while not alienating their families, about the use of vitamin supplements to strengthen the immune system. This community of caregivers augmented my knowledge and helped me join the cancer patient community and feel that I was not alone.
I had been undergoing regular examinations with my new internist, Dr. Khalsa, with whom I developed a strong relationship. Due to his deep study of my body and the effects of the toxins he detected, he suspected that there might be more going on in my body than just the bladder cancer. Dr. Khalsa was proactive, unlike my previous physicians. He thought it would be a good idea to check for other possible cancers, just in case. It was now routine for me to spend more than half of my time in the vicinity of Cedars-Sinai Hospital in Los Angeles. On the day of my scans I went deep inside the hospital’s windowless radiology department to get an EBCT, which is a scan of the heart and surrounding tissue and a CT scan of the chest. I lay down on the big cot to be slid in and out of the whirring machine, with a voice booming, “Breathe in . . . Hold your breath . . . Breathe!” When this was finally over, I got up and put my shirt on. The technician told me that I would have the results in a few days and that my doctor would call me.
I walked out into the next room and was met by a doctor. He asked me, “How did it come out?” I told him that I did not know, that I was told I would get the results in a few days. He cheerily said that he could look up the scan right now. I told him my name and birth date and he pulled up the EBCT. “Hmm,” he said, “this looks pretty good. No plaque in the heart; see how clean that looks?” I looked over his shoulder, feeling a bit nervous. But then he said, “Wait, what about this dark spot down here?” He circled the spot and scratched his chin. “What other scan did you say you got?” he asked. I told him I had also had a chest scan. He pulled that up, and there was the dark spot again, a spidery looking mass of darker materials in my lower right lung. He then turned off the computer and said, “Don’t worry about this; wait until you hear from your doctor.”
Needless to say, I was freaked out as I walked through the hospital and out to the parking lot. When I got to my car I realized that I had left my cell phone in the scan room. So I retraced my steps through the labyrinthine hospital all the way back to that office. When I walked into the room, the same doctor had my scan up on the computer and was speaking to the radiologist. I heard him say that someone needed to examine this scan right away. He then noticed me standing there and clicked off the screen. I got my phone and went to my car.
Imagine the loneliness of that ride home. As I thought about what had happened, I squirmed in my seat. I let out a scream as so many thoughts raced through my head! I knew so much more about cancer then than I had when I was first diagnosed just two months before, and my newfound knowledge really scared me. Did I have lung cancer? Was that a spot on my lung?! Did I have metastasized bladder cancer? Was this the beginning of the end? Looking outside at the other cars, I realized how alone I was. My personal fear and agony were insignificant to anyone else except for Marilu and my children. I could die, and it would not affect anyone except them. No one would even learn anything from my fate—what was there to learn? The pettiness of my disease embarrassed me. I did not want Marilu to discover that I was even sicker than she thought. A sudden death by accident seemed soothing and alluring, but now that I knew I had a fatal disease I would never get that sort of painless death. Instead I felt fated to deteriorate slowly but surely, to disappoint all those whom I loved. My heart sank. The tears welled up in my eyes. I was totally screwed in a way that I had never imagined.
I thought back on my childhood and realized that there was no one hundred years for me. No living three score and ten. No seeing my granddaughter grow up. No old age, no marrying my true love. The finality of the situation made me feel so sorry for myself that I wept inside. I knew I had lung cancer without going to a pulmonologist. I knew that my smoking had caused me to have an untimely death. I had brought this on myself. I felt like all the things I had done the past months, all the changes that had occurred after getting with Marilu, were for naught. A second cancer, possibly metastasized bladder cancer in the lung, would condemn me to an early death. My ignorance of what was important had led me to throw away everything.
But the human spirit is strong. The survival mechanism continues to beat even in the breast of a condemned man. The dreams I had, snatched from long restless nights, were not the dreams of a dead man. I got to sleep each night with my beautiful woman, and that helped, but God, that ride home was still cold and lonely! I needed to see Marilu so badly, to hold her close and try to imagine this was not happening.
The drive home and those first hours were bad, the worst of my disease, as it turned out. So many people helped me through these two cancers—Marilu, my children, my parents, my doctors. But none of their help would have mattered without a strong internal desire to live. And not just a fear of death, though I had plenty of that. Through all of the pain and stress of my life, I remained an upbeat person. And now, as I faced death, hope returned to me. I could not give up! I had to try to live. And as I grew more resolute, my self-pity melted away. I would not be a victim; I would not give into this awful fate. Thank God for the power of denial. It gave me strength to ignore the odds and fight for my life.
When I got home from that horrific drive I called Marilu and gave her the preliminary report. There was nothing I could do now but wait for the radiologist to send in his findings and have a follow-up meeting with Dr. Khalsa. Nothing to do but ruminate, fret, and pace the floor. I had been a smoker, so lung cancer was an easy diagnosis. And a terrifying one! Of all my precious vital organs I had been the most cavalier with my lungs. The incessant smoking in my late teens and twenties—what had I been thinking? I had felt guilty, but yet I continued to suck that smoke deep into my lungs long after I stopped enjoying it. What an addictive waste that habit is! I finally quit in 1986 while on a business trip to Venezuela. I was left for a day with nothing to do, and so I had found a local bar and drank the wonderful local brew called Polar. And I smoked as I spoke the local language with the fishermen and truckers of Puerto Cabello and stared at the friendly polar bears lounging on the ice etched into the bottle. That night I had gone back to my hotel room, and there I spit phlegm into a wastebasket all night long. That was it. The chronic bronchitis finally convinced this old seaman to give up the habit. Now, seventeen years later, I not only had bladder cancer but possibly lung cancer as well! So much to regret.
Marilu
We were now on the fast track to see if the BCG could potentially cure the cancer, or at least hold it at bay while we let the detox do its magic and figure out what else could be done. Staging the cancer between 2 and 3, we knew that time was of the essence, so it was important that Michael stay the course with his detox, diet, supplements, and emotional wellness—including lots of happy, loving sex, of course. The night of his diagnosis we clung to each other, saying, “At least we now know what we’re up against, and thank God we didn’t wait until September.” Hearing that Michael had CIS was definitely the scariest moment in our life together thus far, but it was soon outdone by more intense news the very next day.
Michael was driving back to his home in Palos Verdes when he called to say that during the CT scan Khalsa had ordered for his heart, they found a suspicious spot on his lung. Just when we thought we knew where he was at with the CIS, this new development could mean the worst news of all. We were in shock. His voice even sounded different as he was telling me the story. “I’ll be right there,” I said, not caring that it was rush-hour traffic and would take me two hours. I jumped in the car and put on the instrumental song “Inspiration” by the Gipsy Kings and listened to it again and again, saying over and over to myself, “If it’s cancer, please just be lung cancer. Please just be lung cancer. Please just be lung cancer.” As crazy as that sounds now, I knew that if this new possible site were bladder cancer, it would mean that it had metastasized and would be even worse than our worst fears up until that point. And as if the music and mantra could ward off the cancer gods, I did not stop listening or repeating those words until I reached Michael’s house.
For the first time since this whole ordeal began, Michael looked scared. We held each other close and couldn’t let go. Neither of us said anything until, trying not to cry, I said, “Don’t worry. Whatever it is, we will deal with it. Even if it’s stage 4 bladder cancer, I’ve known people who have cured stage 4 cancers before. We will go all over the country to every place I know. You are not going to die.”
Dealing with cancer is like a twelve-step program. One day at a time. Yesterday was the confirmation of CIS. Today was a spot on his lung. And tomorrow would be Michael’s first BCG treatment. Who knew what that would bring? And all before we were leaving the day after that for San Mateo for another big BrownTrout party at his brother and sister-in-law’s house. Michael’s siblings and parents would all be there, and I wondered just how much he’d tell them about what he was going through. Michael comes off as the strong, silent type, but I knew none of this was going to be easy for him. Listens to and follows directions. With the spot on his lung, we’d now need more people to listen to and more directions to follow. But who were they? And what would they say?