I need to start this story by relating that Cathy’s folks died in their 90’s, while neither of my parents made it out of their 70’s. We did not often discuss our own demise, but when we did, I would remind her that I thought she would outlive me by decades. When Cathy realized there were some issues with her blood that turned out to be a myeloma diagnosis, my ignorance allowed me to be rather dismissive, because her mortality had seemed so much further into the future than mine. She was not expressing any particular physical complaints. She was, quite frankly, always more medically worried about her future than I thought she had reason to be. I was bothered by the intrusion into our free time by all the tests she was taking. Cathy was 64 and we were looking at retirement; all of these medical appointments were getting in the way of our planning.
When Cathy finally explained, “It’s a blood cancer!” I focused. Then, learning about the potential for bone fractures and organ damage, it woke me up to the reality of what we were going to be dealing with.
Having grown up with two brothers suffering from Crohn’s disease, her birth family inhabited a world of medical consciousness that was a galaxy away from my upbringing. Her mom was constantly traveling to various clinics where her brothers could receive proper care for a disease that was little known or understood at that time. So, whether because of osmosis or simple curiosity about her brothers’ ailments, Cathy had always been much more medically savvy than me. Once the myeloma diagnosis was delivered, she was busy researching her treatment options, studying the possible doctors and facilities available both locally and around the country while I remained a supportive but uninformed listening post. The numbers indicated that the disease was more than MGUS, but less than full on MM. We planned a visit to the Mayo clinic for the following February as Cathy continued working on her current production. She was most concerned with not letting the news of this disease reach anyone she might work with; her fear of being labeled as medically compromised (in an industry that works you to death) kept us from discussing things that might let this cat out of the bag.
Our health plans were PPOs linked primarily to UCLA’s Health Network. The initial oncologist we saw at UCLA was urging her to undergo the currently accepted treatment for myeloma, stem cell transplant. Cathy was trying to find a way to schedule this treatment into a slot that wouldn’t conflict with possible work or lead to difficulty explaining her unavailability for jobs.
It was late November when I was reaching out to the Mayo Clinic to schedule a visit for the following February, when Cathy’s production would be on hiatus. A visit to Rochester, Minnesota would involve air travel, rental cars, and accommodations. I was forwarding medical records and test results, coordinating with our dual insurance coverages, and trying to learn something about the doctors who would be seeing her. In the meantime, Cathy’s network of friends from outside the motion picture industry were offering suggestions for local treatment options.
How exactly we found our way to Dr. Berenson, I don’t really remember. But, our first visit to the West Hollywood offices was like finding the keys to the kingdom. I don’t recall waiting a particularly long time in
his lobby before being seen, and once in the exam room he did not seem rushed or in a hurry to be finished with us. Dr. Berenson had all of her records in a file under his arm and when he didn’t see a particular test
in the package, he was on the phone to someone at UCLA the next second to see about getting it. He took time to explain why he didn’t believe in the standard stem cell transplant treatment that UCLA had recommended because it did not produce any better outcomes than his treatments. He explained why it made more sense to monitor the disease until it reached a more critical phase before beginning any treatment. He gave Cathy his personal cell number and told her to call with any questions -- he actually answers the phone and returns his messages promptly!! He also shared that Cathy should start taking a drug to build up her bones
(Zometa). When he learned of Cathy’s dental issues, he introduced her to his periodontal dentist/implantologist of choice, Dr. Jeffrey Waterman, and set up her first appointment with him.
We settled into a routine of Cathy coming into the office once a month for labs and a brief visit with Dr. B to let her know his take on the disease's progress, or, in our case, the lack thereof. Although Cathy was his patient, he seemed to be directing a lot of the conversation my way, making me feel very included in the process.
Cathy also took it upon herself to radically change her already healthy diet to one that was even stricter. She started eliminating all animal protein, oils and sugars, which was a bridge too far for me. This went on for several months while Cathy was proceeding with the dental work that needed to be completed before she could begin the treatment with Zometa.
Yet another new diagnosis revealed itself late the following December - amyloidosis. The myeloma was remaining at levels below which Dr. B did not think treatment was necessary, but he did express his concerns over this new diagnosis and informed us that Cathy needed to start treatment for the amyloidosis. Wow! We went from thinking her health issues were not that severe to starting chemo treatments with all the implications that the word ‘chemo’ triggers.
As the holidays were approaching, we were figuring out the schedule for Cathy’s treatments to start during the end of January 2020. Cathy’s health was our focus, and we were comforted by Dr. Berenson’s assurances that her myeloma and amyloidosis were treatable with currently available medications. We saw the treatments as a speedbump and continued with our plans to visit a friend in Italy sometime in March. I was involved in the political campaigns for a friend as well as in the Warren Campaign as the California Primary neared. But the treatments were serious business and I wanted Cathy to know I was fully committed to helping her through them. I would take her into the clinic and sit with her as the drugs flowed into her system. I’d sat through the treatment sessions for my mother and sister, both of whom have passed, so I was not a stranger to the set up. That said, it was a real reality check as I sat there with Cathy, thinking, "No, not her!” Ok, we’re in our 60’s but this is all too soon.
“Cathy is going to be around for a long time," I kept telling myself over and over again. I presented as positive a face as possible even though I was as confused and uncertain about our mortality as I’d ever been. I started an ‘Empowerment Workshop” offered by my Climate Lobby group at the end of January, meeting once a week by phone with three other trainees and the facilitator. This workshop is a step-by-step process for transforming yourself into a Climate Leader by learning to understand how much our human interpretations of events color our perception and subsequent reactions. We practice how to make requests of each other and learn to build strength in our chapters by declaring an ‘impossible future’ and creating that future through making requests of others and honoring requests made of us. I am oversimplifying this definition to just a few of the tenets of what we were doing as Cathy was beginning her treatments.
Cathy decided it was better to get a port installed into her chest for the infusions, instead of enduring multiple punctures into her arms. Once it was installed, she developed an infection shortly thereafter, which Dr. B
quickly treated with antibiotics. For me, every new problem appeared as another obstacle in our plans to get to Europe in March, to see our friend who was also undergoing cancer treatments! I was rationalizing that I could still go visit our friend and Cathy could take herself to the office, but I wanted her to know that we were in this together. Frankly, I was not able to truly understand how she was feeling, nor was I able to compete with Cathy’s extraordinary facility for understanding medical science and the functioning of our irrational healthcare system. All I could do was demonstrate my genuine concern for her health; I just had to be there. And I was doing my best to share the experience of what she was going through, but I was privately angry as these external impediments frustrated our travel plans. I was unable to imagine the serious impact of
the COVID-19 virus on the future. Cathy celebrated her 66th birthday when she was nearing the halfway point of her first treatment regimen. We were feeling like she was coming through this OK. Her numbers were looking good, and we began the next month with a sincere belief that, if this was her treatment, she could handle it. Then the pandemic was upon us.
Soon enough it became clear that any air travel was out of the question. And, although travel by car around the city was getting easier, there were fewer and fewer places we felt safe going. We rapidly adapted to the
complicated procedures for sanitizing ourselves and anything we brought into the house from markets, stores, or the mailbox. Cathy set up tables outside our kitchen door for staging the cleaning of food and boxes before
bringing them into our pantry. We already had a decent supply of food handling gloves and toilet paper, but we stocked up on chlorine bleach and surgical procedure masks - the N95’s were sold out everywhere we looked. Already a shoeless household, we now began changing our clothes in our laundry room as well before entering the kitchen and washing our hands after any possible exposure to contaminated surfaces. What a chore adapting to this new reality was becoming; so many added steps to simply bringing in some packages, mail, or clothes from the “outside world.” It was a painful adaptation to the pandemic reality, made all more grave by the fact of Cathy’s impaired immune state.
Once the pandemic began, Dr. B’s office was limiting visitors in the treatment area, so I would drop her off and wait in the car while she was being infused. I would study my ‘empowerment' literature during my wait.
Did I really need to drive her? There was so little I could do to help her. I felt at least I was sparing her the hassle of finding a parking space.
We got through March and finished that round of treatment on April 3rd. Cathy was now halfway through this first regimen and all the numbers indicated she was responding well, and her side effects were minimal. We
were looking forward to the week off before new lab samples were needed and another week before treatments started again.
On Tuesday, April 7th, Cathy felt nauseous in the morning and stayed in bed most of the day. When she didn’t feel better by 5 PM, she put in a call to Dr. B. He returned her call quickly and asked if she had a fever;
we took her temp, and it was a bit over 101. Dr. B recommended going to the emergency room as she probably needed some antibiotics, but Cathy balked at the idea because of COVID exposure there and said that she didn’t feel that bad. We talked about which hospital to go to if we decided to go. Dr. B said Cedars was pretty full of COVID cases and asked if we had any antibiotics at home. I don’t remember which ones we had, but he suggested taking them and some Tylenol. He checked back with her an hour or so later and the fever had dropped to a bit below 100. She went back to bed, I did too, a few hours later.
At around 1:30 AM, she woke me up saying she felt terrible and needed to go to the emergency room -- she was white as a sheet! I drove her to Providence St. Joseph in Burbank, our local go- to emergency facility. When we got out of the car, there were guards outside the emergency room, and I was not allowed to accompany her inside. I hugged her goodbye and moved the car to a parking garage to wait to see if she
was going to be admitted. I sat in the car thinking they’ll give her some antibiotics, probably through an IV and I will pick her up in the morning; two hours later I was called by staff to say she was being admitted.
Driving home I didn’t think too much about anything but whether she was going to be exposed to the virus. Looking back at my texts, I see that I texted her at 3:50 AM to let her know that I was home and anxious to hear from her. We communicated a little bit on that Wednesday. She was being treated with antibiotics and was still suffering intense stomach pain. She was receiving Dilaudid for the pain and was unable to move her bowels. It didn’t sound too good to me, but I assumed they would release her the next day once the antibiotics had done their job. I texted Dr. B to let him know where she was, and her primary care physician, Dr. Ben Waterman as well, but neither had hospital privileges at this facility.
I set about the task of letting our kids and Cathy’s sibs know what was going on, and spent some time changing the bedding and cleaning the house since we no longer had our housekeeper stopping by once a week. I wanted things to be clean when I expected to bring her home the next day.
Sometime on Thursday the 9th, Cathy texted me that her COVID-19 test came back negative, and they were moving her to a non- COVID ICU bed. Wow, “ICU,” I thought, “that seems extreme, I guess she’s not coming home today, but probably tomorrow?”
On Friday, I learned that she apparently had a UTI that had turned into sepsis and ischemic colitis. They were treating her pain with Dilaudid and giving her stool softeners to get her bowels moving. I texted her several times that day. However, she didn’t respond, and I was getting worried (little did I know that I wouldn’t hear her speak again for over two weeks!). I was reaching out to the doctors assigned to her care but was not getting responses. I was confused and unhappy with the sepsis diagnosis, but unable to comprehend the totality of what she was being treated for. Also, I was passing on these diagnostic updates to Dr. B and
Dr. Waterman, whose responses were concerning but not alarming.
This was so frustrating, not to be able to sit by my wife's side as she was going through this agony. When I was on the phone with the nurse assigned to her bed, I learned she was being restrained so as not to remove any of the IVs or other monitoring connections, while in the background, I could hear all this moaning that sounded absolutely chillingly awful! I questioned the nurse’s authority to restrain her and was rather coldly told she had that authority. Cathy is the most compliant of patients, always following doctor’s instructions to the letter. And here she was, being restrained, medicated, and emitting sounds of excruciating pain that I was unable to do anything about. I felt so helpless not being able to be in there with her, and I felt this system was treating her without understanding who she was as a person. I also knew, that if the situation were reversed, Cathy would be actively intervening in my care. I wanted to be providing her the same attention (it is a very high bar to reach).
The nurses continued giving me updates throughout the weekend on the medication she was receiving, her temperature and blood pressure, blood counts, various other indicators of liver & kidney function all of which
were way outside of the “normal” range. The weekend passed with the indicators confirming that the sepsis had, in fact, passed, that her heart function was returning to normal. However, she still did not have good liver & kidney test results. Despite that, I was getting the sense that this nightmare would soon be over, and Dr. B agreed.
On Tuesday, I received a call from the hospital’s palliative care department to set up an appointment with their doctor. Did Cathy have an advance directive? I was a bit confused. Were they treating her or expecting to release her to a hospice facility? I’d had enough (my empowerment training kicked in) and I insisted on coming in for a face-to-face meeting with this palliative care doctor; I felt it was time to put human faces to Cathy’s life, let these people know who she is and what she means to us. I wanted to make the personal connection with the hospital team who was treating Cathy, that this was a person, not just some anonymous patient in their facility.
The meeting was the next day and our son, Daniel accompanied me to the hospital, while our daughter, Mia was on the phone from her home in Portland, as was Dr. B, who wanted to make sure that they understood that
Cathy’s treatment for her myeloma and amyloidosis should not be considered as a factor in any decision for Cathy’s future. We had to have the meeting outside the hospital, as no visitors were allowed in the facility. We
learned that the reason for this meeting was because the septic shock that Cathy had experienced had critically impaired her liver & kidney functions, and the concern was that this had affected Cathy’s brain.
After Dr. B finished explaining the myeloma and amyloidosis status and made sure that they were not using it as some determinant in her care, we laid out the case for who Cathy was just a few weeks before this whole episode began. We stated that she was a fully functioning, walking, talking and hard-working 1st AD in the film industry, as well as an active, highly motivated and caring mother and wife. We let them know we were prepared to offer our approval for any treatments they deemed necessary for her full recovery. I made a sincere and vehement request to be able to visit her. She had been drugged and isolated from her loved ones for too long -- we needed to see her, she needed to hear our voices, hold our hands, feel our presence, feel our love and we wanted to give her our strength to help her through this! I pointed out how cruel it would be for
her to be left languishing and wondering why none of her family was with her through this trauma, and only be allowed to visit her to say goodbye, once she was considered terminal.
We ended the meeting having given our approval for dialysis to be started, and intubation to be allowed if useful. I left, and our son Daniel went back to the hospital with the doctors to try to load some music onto her
iPhone he thought Cathy would respond to.
I got home feeling satisfied that we’d made our point -- that Cathy’s was a life worth investing their facility’s time, resources and energy towards rehabilitating. I’d given it my best shot.
That evening I received one of the few calls back from her attending physician, who told me that the blood pressure medication Cathy had been given, vasopressors, I think they’re called, had produced the side effect
of restricting blood flow to her feet. The vascular surgeons determined, because the contrast liquid necessary for good imaging could affect liver or kidney function, that x-rays were not an option for them to help
diagnose the nature of the problem; and, therefore, they couldn’t do anything. I didn’t know enough to ask about other options for treating this situation but have since learned that other techniques can be used to
address this issue.
I went to bed pretty depressed at the thought of Cathy being possibly brain damaged and possibly losing both of her feet. Needless to say, it was a sleepless night, when I came face-to-face with the reality that Cathy just might not make it home. I was grieving my loss. I realized how much I loved her and how sad it would be for me to lose her.
The next morning, I had a tearful conversation with my brother-in-law, who’d recently lost my sister to cancer, asking him how he coped with her disease and mental instability for years? I was falling apart after only a
few days of this dawning reality. We are old friends (he and my sister had been together since junior high school) and his words of comfort and understanding really pulled me through the lowest point in this drama.
I decided that Cathy’s siblings and close friends (of which she has many) needed to be aware of the dire straits she was in. I spent most of the morning trying to write a short text explaining Cathy’s situation to all of those people who I’d not been communicating with; trying to inform them of the situation, and possibly prepare them for her loss.
If Cathy was going to come through this, it would be with the thoughts and prayers and love of the many people whose lives she had touched. It was not an easy task and it had the added effect of increasing the number of people I needed to keep lines of communication open with.
Mid-morning on that Thursday, I got a call from the palliative care doctor we met with. He was arranging for me to visit Cathy that afternoon. Only me, only for half an hour, and only this once. I immediately agreed and
then started pushing for our son to join me; “No! Only you and only this once.” He had heard the sincerity and passion in my voice the previous day and apparently stuck his neck out to get this visit approved, but these
were the conditions.
I got into her room in the ICU and looked at my precious mate’s face for the first time in almost two weeks; I stood there holding her hand, looking at her face. The last time I saw her was the night I’d dropped her off when she had no color in her face and was looking frail and frightened. What I saw today was a sedated, intubated, but otherwise calm and peaceful woman, who was on dialysis, with the catheter going in somewhere just below her neck. I tried hard to visualize her well and functioning again. I found the words to express my love and care for her and how much I missed her and wanted her home.
I leaned in to kiss her cheek and forehead, repeating over and over again how much I loved and missed her. I know I overstayed my allotted 30 minutes, but I just did not want to leave her. I did look at her feet, a discolored bluish purple, and cold as ice; I squeamishly put my hands around them, wondering what it
would take to bring them back to life.
Finally interrupted by the nurses who needed to perform some procedure on her, I was ushered into a side room outside of the ICU where the doctor repeated that this was a one-time deal that could not be repeated.
We discussed some other details and then I went back to her room to say goodbye and make sure that her iPhone was plugged into a charger with a cord that could reach to her bed, I put the earbuds into her ears and put on some music I thought she’d like. It was a bittersweet parting. I had no idea if she would ever know
if I was there, but hoped I’d gotten through to her.
As I was walking out, elated that I'd seen her and very pleased that I saw color in her face that wasn’t there the last time I saw her, I began to realize that the color I saw was a bit more yellow than pink, that what I’d seen was her looking a bit jaundiced. I tried not to think of her feet.
The next day, Friday, with Cathy intubated and on dialysis, her liver and kidney function indicators continued improving; she was given blood for treating her anemia. Around 1PM, our son Daniel was Face-Timing with his mother while a nurse held the phone so he could see when Cathy nodded an acknowledgment of his presence on the phone. She could hear him but wasn’t quite up to opening her eyes. Daniel was over the moon that she was responding, and I think we all sensed that she was coming around.
On Saturday, I had a similar experience Face-Timing with her while the nurse held up the phone for her to see me. She nodded and smiled at the sound of my voice, and I was elated! Her urine production was up, and her
bowels were moving, she was on a heparin drip to reduce the clotting.
On Sunday, the nurse said she was gesturing with her hands that she wanted some water and was trying to hold the phone when I was Face-Timing with her. The nurse also let me know that she could feel a pulse in her feet.
On Monday, they removed the ventilator and Cathy was breathing just fine on her own. They were going to perform a procedure to remove the fluid build-up from her lungs that occurred from the intubation. On Tuesday, she was able to discontinue dialysis. She was now fully conscious and indicated that she was anxious to get out of the hospital bed. Her voice was very thin, but she was talking!
If you’ve managed to read through the above text then I think you can get a sense of my journey as a caregiver, from a cavalier, slightly concerned spouse to a full-time dedicated caregiver, driver, cook, cleaner and commode attendant. I am now totally dedicated to giving Cathy the help she needs.
As I write this, almost a year after the traumatic events of that April, I need to give a short update on us. Cathy was released in early May with severely damaged feet. We tried hyperbaric oxygen treatments, but they
were applied too late. The lab work done at Dr. B’s clinic revealed that Cathy needed to begin additional treatments sooner than later to treat her amyloidosis. This meant we would no longer have time for her feet to
recover because the chemo treatments would impede healing. In July, the podiatrist removed the front half of her right foot and then, a few weeks later, a vascular surgeon performed a below the knee amputation of Cathy’s left foot. She is currently learning to walk again with a partial right foot insert and a prosthetic left foot. Her attitude remains positive and focused on recovering as much mobility as possible. We have plans for a hiking trip this summer in Glacier National Park.
Cathy will not be carrying a backpack.
David Gaines is a writer living in California.