I stopped writing here for various reasons earlier this year, one of those being that my father was diagnosed this spring with glioblastoma. Writing is typically a good outlet for my emotions, but I just haven’t felt compelled to do so publicly. My father, much of our family, and myself are by nature fairly private people. His diagnosis hasn’t yet been broadcast across social media, but I guess perhaps after posting this it will be, and that’s fine too. This isn’t a secret we’ve been keeping. Beyond that, it’s kind of hard to avoid more than ever with the news of John McCain, and my google search for glioblastoma alerting me with five times the normal amount of articles I’d receive in my inbox daily. If I thought it was already in my face, it’s managed to be even more so now.
I recently read this written by a woman who lost her husband to glioblastoma, and was tempted to share it because part of what she wrote really resonated with what I’ve been feeling. Yet, I couldn’t bring myself to do so, because at the same time much of her emotion isn’t fully reflective of what my current state of mind on all of this is. Everyone is different, and everyone must go through stages of grief when faced with the terminal diagnosis of a loved one. I’ve already seen this from what my brothers and I have gone through emotionally, and how different it has been for all of us. So I don’t write this as a retort or a criticism, I just write this from my current perspective, still in the beginning of this disease with my father. I write this because finally, after many weeks of coming to terms with this, I feel ready to.
My parents are my best friends. And as far as father as daughter relationships go, we’re probably as close as they come. I have always proudly been my father’s daughter. In the way I look, my taste in food and wine, the quirky and oftentimes socially awkward tendencies I have, and so much more of my personality…the good, and the bad – much to my mother’s dismay at times. I’m not sure more than a week has ever gone by when I haven’t picked up the phone to call Dad. For relationship, business, or financial advice…or even just to tell him about a good bottle of wine I found. After his surgery he told me I was the love of his life. I know he meant it. I know how fortunate I am to have the Daddy/daughter relationship we have had my whole life. I also know that’s why this hurts so unbearably badly.
Shortly after marrying my husband we made the decision that I wouldn’t work a traditional job. There were several reasons for this, but one of the main ones was that it was so difficult for me to live far from my family. My husband is a business owner and had the ability to comfortably support us both, so we mutually decided it was more important for me to work for his business as needed while also pursuing other endeavors, which would grant me the same flexibility he had with being self-employed. So I could go home whenever I wanted. So we were able to do things like travel to Europe for 18 days last year to meet Dad for skiing in Italy. And, also, we said, just in case something happened and I needed to be there for my family. I suppose you could say we were fortunate at such a young age to prioritize “living in the moment” above a strong desire for a steady second income. Although I’m sure others didn’t always see the rationality in it.
It’s striking to me how right that decision was in the subsequent events of Dad’s diagnosis. In a flurry I threw together a bag of clothes at the news of him in the ER with a tumor in his brain. My husband begged me to wait for him to get home before I made what would be the longest drive home of my life, but I just couldn’t. I also couldn’t bring myself to leave for the next 16 days, for fear that Dad wouldn’t make it through his surgery, and the desperation I felt at needing to spend every last second with him that I could.
I still feel that desperation. I feel like no matter what happens at this point, my brothers and I are almost definitely going to get cheated out of time with Dad I always thought we’d have. A good 20-30 years of time. A big chunk of my life I’m not okay with accepting he won’t be here for. I’ve been walking around with a broken heart since April 21st, and I realize I probably always will be. The thought of losing my Daddy feels like I’m losing a piece of myself. And let’s be honest – if I lose him, I am losing a piece of myself.
Dad was fortunate to be able to participate in a clinical trial straight away, this gave us a lot of hope initially that we probably wouldn’t have had otherwise. They injected neural stem cells loaded with an adenovirus into his brain at the time of his resection (the science behind this is amazing). He was the first person ever to receive this treatment, so there was also fear of the potential unknown complications from this. So far though, he’s tolerated everything well. The surgery, the trial, the radiation, and his first round of chemotherapy. He still has some deficits with language (his original symptoms), but all things considered, today he is doing very well. Going to work when he feels like it (he’s also self-employed), spending time with friends and family, living life, and very confident he’s going to beat this.
That brings me back to what I read here. You could never understand what it’s like to go through this unless you’ve actually lived it. Unless it was your husband, father, or loved one. The emotions can be expressed, but unless they’re felt so close to your heart you just can’t understand. I also don’t understand what losing somebody to this feels like either, because I haven’t yet. When I finally returned home after Dad’s surgery I kept saying, “I’m a different person than I was two weeks ago”, and I absolutely am. But Dad is still here. He’s still alive. Yet my cousin, who is not a religious person, told me she’s never felt compelled to pray in her life other than for my father recently. This speaks to the desperation and helplessness we feel as a family. There is nothing anyone who loves him can do right now but grasp for hope, until there isn’t any more hope left to grasp for. We still have hope. I couldn’t share what was written because we’re not where she is yet, and her sentiments are not fully reflective of what this journey has been for me up to this point. Sometimes you just need to find your own words to put out there, especially on something as deeply personal as this is.
When she spoke of the need for people to level with her rather than send message after message of inspiring and optimistic words in light of such a grim diagnosis, I get that. At the same time, it actually did mean me more to me than I could ever have imagined it would throughout the initial days of this. When people I never would have expected to come out of the woodwork did text or message us, offering their well wishes and prayers. Even more so, when friends and family came and filled that hospital waiting room – I will never forget those people being there at such a vulnerable, needy time in our lives. So while seeing some of the tweets to John McCain also struck me as absurd knowing his prognosis, I get it. People just don’t know what else to do or say. Especially in the beginning when it’s all so shocking and emotions are running wild. I just hope McCain’s family is able to remain positive while still having a grasp on the reality of this situation, and how it inevitably will likely end. It’s a delicate balance between optimism and reality.
The loneliness of these emotions can be overwhelming at times. When she also talked about the need for connection, normalcy, and reality…this is what resonated with me. Because while I do appreciate the well-wishes and prayers, what I really need from those who know me well is mostly just somebody to offer their presence. To just listen. A glass of wine and sushi with a friend sounds better than it ever has right about now. Brain cancer has consumed my life. A physical shoulder to lean on or an offer to escape from the reality of it is what I need more than a text reminding me that you’re thinking of us.
Right now, we are all just trying to take it day by day. When Dad asked his oncologist, Dr. Stupp, when he could drink wine again he was told he “must only drink the good wine from now on!” and so I live by that now, drinking every glass in honor of my Daddy. In the midst of going through his radiation treatments, while Dad and I were walking around an art fair in Chicago, we asked a man in one of the booths how he was. He responded with a big confident grin “best day of my life!” We looked at each other amused, and ever since then, when we ask one another “how are you doing?”, we’ll respond with, “best day of my life!” For us, that’s the only way to make it through this, to be eternally positive and optimistic while we still have the ability to be. Dad also sent a group text to my older brothers and I the morning of his surgery. Among other things, he told us how proud he was to have the three best kids in the world, that we had many great years left ahead together, and to always live life positive. I knew that morning why he sent that. I also knew that message, “always live life positive”, is one he would want us to carry on no matter what happened that day.
A lot lies ahead of us. Maybe that’s why in spite of being a realist, and in order to survive whatever that may be, I must also remain an optimist.