For most people, their first love is their parents, at least, that was the case for me. First my mother and then my father. Loving me unconditionally from the beginning, it was from them that I learned what love is without ever having to be told. It was evident in the way they held me, sang to me, read me stories and made silly faces in hopes of making me laugh. Two years later, I’d learn a different kind of love, thanks to the arrival of my little brother. With him, I learned what it felt like to want to protect and care for a person other than myself, and my world was then complete. I was surrounded by the three most special people in the world.
Growing up, I knew I could rely on my parents for anything. They could remedy any sorrow, answer any question, heal any boo boos and scare away any monsters under my bed. My mom taught me to be kind and loving in how she cared for my brother and I and the rest of our family. Everything she did, I wanted to do and everywhere I went, I wanted her to join – she was my best friend. She was the youngest and most beautiful, in my opinion, of all the other room moms at school. At a very young age, she showed me how to eat healthily and use food to nourish the body, brain and soul, as well as the importance of exercise to maintain health, energy and overall fitness. Without knowing it then, she was the OG wellness guru in my life and fueled my passion that would eventually set me on my current journey and pursuit of wellness, health and fitness for my father and I. All that and she was the coolest Mom around and I wanted to grow up to be just like her.
My father was a force of nature. He was always incredibly fun to be around – the kind of guy who has a special magnetic charm about him that attracts friends and followers in any circle. He could be described as a combination of an intellectual history buff with keen interests in studying many diverse cultures, arts and literature, while also being a big-time jock from Long Island, NY. He grew up playing lacrosse and football and went on to play both at Hofstra. He was smart, athletic and strong. So strong in fact, that when he confided in me one night as he was tucking me in to bed, that he was actually an undercover superhero known as Daddy Man, that fought for justice alongside Superman and BatMan nightly while I was asleep, I wholeheartedly believed him.
At some point between then and the age of 40, I learned the truth, and that while he wasn’t actually Daddy Man, he certainly was my hero. He continued to be the strongest person I knew and the strength wasn’t only physical – it was in his sense of discipline, integrity, spirituality and most overwhelmingly in his devotion and love for his kids. You can imagine my shock and devastation when I received the call May 3, 2016, informing me that a tumor had been detected in my father’s brain and that he would need immediate surgery to remove it. The diagnosis of CNS lymphoma, a rare type of brain cancer came within a week or two after the craniotomy and our lives changed forever.
A year and a half later, when the opportunity arose for me to become the primary caregiver for my father, I gladly seized it without thinking twice. At this point, he had completed an experimental round of treatment for this specific type of lymphoma and was in remission. While the cancer was at bay, the challenge was and still is, learning to cope with the damage to my father’s brain incurred by the tumor, the resection of it and a subsequent brain bleed that occurred later in the summer of 2016. While my father had survived brain cancer, life as he knew it would never be the same and the real challenges were just ahead.
Choose Joy
Choose joy. Don’t wait for things to get easier, simpler, better. Life will always be complicated. Learn to be happy right now. Otherwise, you’ll run out of time.
found on the wall of dear friend, Stacey Friedel’s office. I don’t think she wrote it, but I’m crediting her.
The brain damage was primarily to my father’s right frontal lobe. Symptoms of frontal lobe damage include, memory loss, impairment of judgement, changes in behavior, reduced motor skills, attention deficit, and ability to express emotion, among others. You can think of his brain like a file cabinet with all contents still inside, but no folders to keep them organized. Memories or thoughts may come out at the wrong time, or sometimes they may be spot on. His memories of the past are much clearer than current day. While we’ve lived in our new home together for a year now, he still at times will refer to it as a hotel and ask when we’re going home. If you were to ask him how long ago he was diagnosed with brain cancer, he may tell you it’s only been a few months. Some days he’s clearer than others and more like his old self and some days he’s content sitting and watching nonsense TV for hours – something that would have never interested him pre-tumor. To say there have been some major personality shifts is an understatement, however, there are some core pillars of his personality that never waivered.
He continues to fiercely love his family more than life itself. His children, grandchildren brothers and parents are always at the forefront of his thoughts. Because of the confusion, he’d often believe he had just been sitting with his mother or father (both deceased in the 90’s) and in those moments he seemed so happy to have seen them. Over time, this has improved and while confusion is still a struggle, it rarely now leads him to believe his parents are still here with him, but he still talks about them daily, about how much he loves and misses them. Everything though, revolves around his kids. While as a child, he was the center of mine, I see that my brother and I are now the center of his. Even when he was in the hospital, undergoing chemotherapy at Hopkins, clearly the patient, he’d assume that everything that was happening was somehow related to my brother and I and he was just there as our dad, to make sure we were OK. Nurses would enter the room to check on him and he’d question them, ‘How do you and Danielle know each other?’ or ‘How long have you and Danielle been friends?’ This was a symptom of his confusion, of course, but it gave me insight into how he was processing these events and in his world, he was there to help me, be my dad and meet my new friends.
He remains spiritual, always being thankful to God for his blessings. Often he can be found with his rosary, praying the Hail Mary under his breath. Looking at pictures of his grandchildren or walking the dogs outside on a beautiful day, he’ll exclaim, “God is good!”
He loves music just as much as he always did, if not more. His tastes are wide and varied – so much so that I feel to list a few of his favorites would be a disservice. He’d laugh at this, but I’d consider him a music aficionado. Music brings him joy, calm and relaxation. For hours he can sit and watch the Music Choice channels on TV and then bestow all of the interesting facts he’s learned upon me. For instance, did you know Aretha Franklin once got out of having to pay a parking ticket by serenading the ticketing officer? He’s always humming a tune of his own or one of his favorites – I’ll often hear him in the bathroom singing Sam Cooke’s ‘Chain Gang.’ When undergoing chemo, he wrote a little jingle about Methotrexate. It would be better if you could hear the melody of course, but if you know my father, hopefully you can imagine how it sounded. It’s not a great song, but how many people do you know that make up their own songs about their chemo treatments?
Methotrexate, methotrexate
It is what I ate
To get rid of the cancer, to get rid of the cancer
insert whip sound effect
Finally, as may be obvious from above, he loves to laugh and along with his love of his family, God and music, is one of the primary reasons he’s been able to not only survive all he’s been through, but also to begin to thrive again. His jokes are frequent and they are corny – they always were, actually. He may have created the mold for the original Dad Joke. He sees humor in everything and spends most days either making me laugh or laughing at something I’ve said. A casualty of living with someone who laughs at everything you say is that you grow to believe you’re actually very funny. This can be easily remedied by spending time with your husband who will remind you otherwise.
What impresses me most about him, is that my father doesn’t consciously choose joy – he just is joyful. He doesn’t have to lecture himself not to wallow in the fact that he’s no longer able to be independent, has lost his ability to drive, play golf or do any of the things he used to love doing. His life has changed drastically and he gracefully accepts every change (well, most of them…) with the wisdom of knowing that change is constant and unavoidable. He reminds me that ‘life is something that happens while you’re busy making other plans’ and I think this outlook has been instrumental in his ability to adapt to his new condition. His optimism, resilience and love of life continue to inspire. He is strong still, evident by his relentless dedication to overcoming his illness and subsequent brain damage.
Since becoming the primary caregiver for my father, I’ve been living with him, in hopes of bringing him some joy and companionship – juggling my life: job, relationships with husband, friends and other family, as well as personal responsibilities, while managing his overall care, treatment plan and finances. A typical day for me would consist of taking my father to see a doctor or therapist, laptop in tow, attempting to continue to work as much as possible through the appointment. Upon returning home, I’d work for the remaining portion of the day before it was time to prepare his dinner and then return to work again, trying to work overtime to compensate for any time missed due to the earlier appointment. Breaks would consist of sorting through my father’s mail, ensuring all bills were paid, prepping his medications for the week, or sitting and chatting with him. Answering questions like , “Do you have any idea how many people have ever lived on this earth from the beginning of time?” or “How old is Krystal Koons?”or ”Were you ever a contestant on The Voice?”. It was a packed schedule and it required a lot of focus and mental energy but it was all worth it because I love my dad and I love my job. Weekends, I’d go ‘home’ to the place I used to live with my husband and spend time catching up with him and friends. Getting away to go home or to sometimes commute to the office was possible due to our full time live in aid, Patricia.
Wait, I know you’re thinking, you have a full-time live in aid!? Yes, having Patricia is a gift. She’s wonderful and a perfect fit for my father. She is devoutly religious and has a deep love for God, loves to laugh and has a lot of similar interests to post-tumor Dad. Her responsibilities are to provide supervision of my father at all times, ensure he’s taking his pre-set medications at the right times, prep his meals if I’m not home, and to do all housekeeping for him. With her support, I can get time away when needed, knowing he is safe and with someone who genuinely cares for him.
Last month, when Patricia shared with me that she needed to travel to Togo to honor the passing of the patriarch of her family, my immediate thought was, ‘OK, this is going to be tough, but I can manage. I’ll work remotely during this time and can sacrifice the weekends at ‘home’ with my husband. Often I’m too tired to go anyway. I can buckle down and handle everything I have been handling plus the upkeep of the household , knowing she’ll return in several weeks and I’ll get a break then.’ It wasn’t until talking this over with close friend, Chih, that I even considered the option of requesting an official leave from work. While Chih helped me see that the break was needed, even if Patricia hadn’t needed to travel, it was another close friend, Kim, who helped me deal with the guilt and realize that while I possibly could handle everything while Patricia is away, it didn’t mean that I should.
Someone I was once close with used to say, ‘should is an interesting word’ and he was right. In fact, it can be very negative, depending on how it’s used. Why did I feel that I should absorb all of Patricia’s responsibilities in addition to managing my father’s day to day on top of continuing to work in a role that regularly demands night and weekend hours? The answer was and still is because I didn’t want to let anyone down – not my colleagues, or myself. I thought the definition of success was to be able to manage all of it without asking for help or let anyone down. Despite constant encouragement from colleagues at work to take this opportunity to focus only on my father, and knowing it was genuine, the fact remains that my leave from work leads to additional work for my team and that is hard to sit with. I’m beyond thankful to my friends and colleagues who helped me realize not only that not taking this time may lead to regret, but als that it’s OK to take a break and ask for help.
I’m now on six weeks of approved FMLA and it’s the best decision I’ve made for myself and my father in a long time. It allows me to focus on our wellness as a unit – not only ensuring he gets what he needs to continue to heal, but also that I am well enough to be able to continue to provide the level of care required to not only help him improve but ideally to restore him to his former self. In the past year, he’s made significant progress. All of his doctors have commented on how much clearer, engaged and energetic he is. I’m thrilled at this but even more encouraged by how much progress he could be making with more free time on my hands. Is it too lofty a goal to hope that he can be fully healed and regain his independence? Can he return to pre-tumor Dad? I don’t know for sure if that’s possible, but I’m choosing to believe it can happen, because what I do know is that if I don’t believe in the ability of that miracle to happen, it won’t, and I do believe in miracles.
I now have the time to help support and reinforce the strategies he’s learning in Speech and OT at home. Meals can now be elevated to even healthier and more creative recipes that would have been too involved for me to create before. We can exercise together, which is something he is not able to motivate himself to do alone. Instead of him having to plop himself in front of the TV while I work, we can do puzzles, play chess , color in adult coloring books or plant a garden. We can get out of the house together for daily excursions visiting museums, local parks, or my brother and his kids. All of this stimulation and engagement in the world around him is bound to be good for his brain and motivation to continue to work hard at recovery. We can do any and all things good for our brains, bodies, hearts and souls. It is a time to focus on all-around wellness for the both of us.
This blog is to chronicle our joint pursuit of wellness, to share with our friends and family and anyone else who may be in a similar situation (and if you are, I’d love to hear from you) how we use this time to thrive. It will be to hold myself accountable and to ensure that my time on FMLA, these 42 days of dad, is used to maximized every potential my father has at a full recovery and to ensure I myself am well enough to help him heal completely. We’ve got six weeks and we’re going to make the most of it.
Week 1
So, what have we been up to? Day one had me feeling all kinds of hopeful, with tons of motivation and conviction to absolutely crush every goal we have over these next several weeks. Our first appointment was with a nutritionist at Hopkins. In the past 3 years, my father has gained over 50 lbs due to a combination of lack of physical activity and ability to self-regulate how much he eats. The weight gain brings other complications – high blood pressure and blood sugar levels, as well as contributing to even more lethargy since moving around isn’t as easy as it was before adding on those 50 lbs, so we’ve really got to get rid of this weight.
To my father’s delight, the nutritionist recommended he follow the Mediterranean diet. He was less than thrilled when he learned that despite the fact that meatballs and lasagna are Italian, they are not encouraged on this diet. Regardless, we left with renewed ambition to lose weight and commit to a health diet.
Tuesday’s appointment was with his audiologist. Not much to report here, other than a corny joke, asking the doctor if she could see clear through his head when she looked in his ear. Surprisingly, his hearing has not worsened any, which doesn’t jive with the fact that I have to repeat myself multiple times when talking with him. I think that the brain damage, combined with his hearing loss really impacts his ability to understand, in that he can’t use his ability to reason to figure out what someone has said. For example, if he asks me what I’m doing and I say I’m doing laundry, it should be obvious to him that even if it sounded like it, I did not say I am talking to Cardi B.
It didn’t take too long for my first reality check of how difficult this was going to be. I had what I thought was a perfectly planned out conversation I wanted to have with my dad and his Occupational Therapist about how we needed him to be committed to the goals she’s helping him accomplish and proactive in practicing them at home. This instead sounded to him like we weren’t recognizing how hard he was trying and he felt like he was being disciplined. He got angry, snapped at us and told us that he did not like that conversation at all. This stung and took some of the wind out of my sails. I’ve had to work hard at processing this and reminding myself that this journey is going to have it’s ups and downs and as hard as I’m trying, I can’t control every outcome.
I decided the rest of the day needed to be salvaged and figured he’d love nothing more than to go to his favorite restaurant in Fells Point, Thames Street Oyster House. This place is special to him for a couple of reasons – first because it’s located in what used to be the apartment where he lived in the 70’s and second because it’s one of the only places around where he can get full bellied clams. I’ve been trying to keep him on a mostly plant-based diet, but days like today call for an exception. We followed up a delicious lunch with a tour of the new Pendry hotel and he was happy again.
Thursday’s appointment was with a spinal specialist who is going to do a procedure to alleviate the back pain he feels from his spinal stenosis. As we were sitting in the exam room, waiting for the doctor to come in, he turned to me and asked me, “What are we trying to sell this doctor today?”. Before retiring and becoming a high school teacher in the early 2000s, he spent decades as a highly successful medical sales representative. In that moment, he must have been thinking we were some kind of father-daughter sales team duo, in there that day to make a sale. Luckily, when I reminded him we were the patient, not the sales person, he quickly remembered that to be the case, so I took that as a great sign.
Friday involved a visit with his accountant to get his taxes done and was followed up with a lunch with a high school friend of mine, Kirk. Dad ordered the cheese steak egg rolls, despite the gentle reminder of the Mediterranean diet he’s supposed to be following. Seems like he’s going to stray from this diet whenever we go out for food and I’ll have to accept that, rather than fight him on it, as it never results in a pleasant experience. Going out to eat was something he always loved to do, so I want to be able to continue to give him that experience. The quality of the meals at home are even more important, given this.
The weekend was chock full of wellness activities. Thanks to the sunshine, we were able to spend a lot of time outdoors. We went on walks with the dogs – we even had a bald eagle sighting on one! Bald eagles were something Dad was always on the lookout for, even pre-tumor, so they were always special. These birds were once very close to extinction and the fact that we can sight them flying over the water across from our house is simply amazing. We did some gardening, de-cluttered the house, and made some delicious vegan meals. There was also lots of rest for Dad in anticipation of a busy week to come. Quite frankly, there was a lot of rest for me too, apparently it was needed. Week 1 had its ups and downs, but was overall a success as we navigated our adjusted schedule with our new ability to focus all of our time and energy on him and his recovery.