Since being diagnosed, I’ve had multiple friends thank me for providing them with a road map on how to be the most helpful during this experience. Each time I find it surprising, because I don’t have, and never have, devised a plan for how they could help me. How can you map a journey you’ve never taken? Each persons travel log of cancer is unique, with different hills, valleys, oceans, and paths, and I’ve traversed them the only way I know how, winging it and hoping for the best, much like my first 44 years on this planet. My friends are my significant others, for now at least. I don’t know how this happened, beside them being the most fun, honest, supportive, loving, witty and cheeky group of people I’ve ever had the ridiculous pleasure of living my life with. We haven’t followed traditional paths, even the married with children ones, and it’s evolved into a community of support and good times that is unrivaled. They are my peanut gallery, mutual adoration society, frontal lobe (on occasion), great loves, and confidantes on all things, so it never crossed my mind not to call them immediately after my diagnosis. That was one of my best decisions, yet.
I called and they came, oh my god, did they ever show up. It began with phone calls that day where I laughed while they cried. The most insane grocery delivery maybe ever in the history of grocery delivery, filled to the brim with every anti-carcinogenic remedy available and enough tea to last a lifetime. A postcard campaign where they all piped up with humor and love, sent insanely beautiful flower arrangements, and surprised me with impromptu gatherings where they all dropped in to be there and talk it out: what’s the plan, who do we know, what does this mean, and lots of jokes about rectal cancer. Like I’ve said before, fear and anger won’t thrive where love reigns, and having this support from the beginning was hugely motivational in respect to facing my immediate future head on.
I also have one of the most supportive families in the world, and without some outside assistance, this would place an unfair burden on them. I can’t imagine doing this without their help, and they are relentless when it comes to fighting on my behalf. The hours logged by my mother and sister working through treatment options, best practice for my particular cancer, and the crazy maze of healthcare and insurance have been insane. My father is committed to his particularly important job of making sure we don’t all completely spin out. I can’t imagine how much energy that takes. They couldn’t do this on their own because there simply aren’t enough hours in the week for them to help me take care of the necessary while living their lives at the same time. Having the additional support of my family of choice has given them much needed peace of mind and some time to breathe, which they would never ask for.
On a practical level, it didn’t make sense for me to try to keep my diagnosis quiet. Austin, TX is an island, and once one person knows, soon most people will know. Being from a small town it has never occurred to me that privacy was really an option, and due to my wide social circle and frequent socializing, it made a lot more sense to put it out there. Because of this, I frequently hear from friends all over the world and all over the country, and those doses of light keep my cup filled. My openness also served the purpose of avoiding awkward conversations where people wanted to ask, but didn’t know how. I have experienced the luxury of very few meetings with people who struggled through the thorny question of “how are you,” while kind of knowing how I am, because I was able to set the tone for being a relatively open book about this early on. Sympathy, compassion, humor, love, all of these are wonderful, and I continue to get loads of them.
In general, friends and acquaintances, even strangers, want to be helpful, but often they don’t know what to do or necessarily how to show their concern. I’ve found it makes them feel good to be of service, or offer words of support. Cancer might suck, but it’s also been a bit of a vision quest, so talking about it doesn’t usually send me into tears or fits of melancholy, well, maybe tears, but that’s only because chemotherapy drugs often inhibit the release of serotonin, so I cry all the time at everything, when I’m happy, sad, complacent, it’s ridiculous and kind of fun all at once, but I digress. What I’m trying to say is that by being open with people about my diagnosis, it let’s them see into a world that while somewhat frightening, is also negotiable and not always as scary as it seems, and it allows them that heart warming pleasure of getting to connect with another on a deeply human level. Like Heath McManamy wrote in her farewell letter, “…cancer may have taken almost everything from me, but it never took my love or my hope or my joy. It wasn’t a “battle” it was just life, which is often brutally random and unfair, and that’s simply how it goes sometime.” Cancer is a diagnosis, the rest is just my life.
In the beginning we tried a care calendar with pedicures, dinners, and the like, but soon learned that my schedule was in entirely too much flux to make that work, and I didn’t know what I wanted to do on a daily basis! I was in even more flux than my schedule. Instead of a care calendar they simply checked in a lot. When I had my chemoradiation in Houston this summer, I had a revolving door of friends coming to stay and take me to radiation each day. They met my radiation techs, doctors, and other caregivers. When I came home from treatment they made sure I was kept properly entertained and fed. Leading up to my surgery they stayed close and constantly available. After surgery they watched me struggle my way back into the world of the living, and now they’re sitting through hours of chemotherapy with me as though it’s the best offer they got that day. They let me be sick when I’m sick, and they are up to laugh and play when I’m feeling well, which is more often than I should. They are even asking my chemo-addled, funky brain to teach them Pilates when I’m up to it! Brave, loving, supportive souls.
I recognize that involving friends and family, or anyone, in your diagnosis is a personal decision, and is most certainly not for everyone. I have known very rational, astute, brilliant people who have decided to keep their diagnosis and treatment private. David Bowie died last week having never disclosed his diagnosis to the public. He knew he was dying for 18 months, and in that time produced one more magical piece of art that was released on his birthday, two days before his death. There is so much beauty in the fact that he chose his art as his final act and not his illness. My uncle, nicknamed Atticus Finch, was by far and away one of the best, most complicated, truly good people I’ve ever known, and he kept his diagnosis under lock and key for 7 years, and much like David Bowie, people were shocked to hear he had died from cancer. He couldn’t stand the thought of anyone looking at him with pity, or feeling sorry for him, or offering to pray for him. The man had no tolerance for that business. Cancer is an intimate experience, it cuts deep and exposes our most fragile nature and unexpected grit. If it is something you want to share, this is the closest I can come to a roadmap:
- Share your diagnosis with the people closest to you. How do you do it? My method was to vomit this information. “Hey, yeah, done with my colonoscopy, thank god. That prep is horrible. They found a malignancy. Cancer. I don’t know, but it’s big. Oh no, don’t cry!” is how most of my conversations went. I’m quite sure that someone with more tact could have done this better, but at that point tact wasn’t a priority.
- Think about what your needs actually are and don’t be afraid to state them. Early on, I knew the last thing I needed was people bringing me food. I didn’t know what I wanted to eat day to day, so having people sign up to bring meals wasn’t helpful. What I find more beneficial is having friends available to take me to appointments and hang-out. I enjoy that, and most of the time it makes something that is not fun at all seem fun. Perception is reality. I also like having dates to walk, and a good friend made the excellent recommendation of having a text list of people I can shout out to when I want company so that friends don’t feel as though they’re bothering me. They won’t all be available at the same time, but if someone’s in the neighborhood they can drop in and watch me groan on the bad days. Everyone’s needs are personal, and taking the time to truly assess what yours are will serve you well.
- Communicate. It’s okay to say you feel like garbage, and it’s okay to say you’re having a fantastic day, because both of these things will be true. If you want company ask, if you don’t want company say so, if you need help ask, and never be afraid to say no or maybe later. This is absolutely the right time to be selfish and upfront about your needs, and unfortunately sometimes people are trying to be helpful but offer up exactly the wrong thing. Don’t worry about offending them, because this is actually about you. Of course, we all know how to be polite when refusing an offer of kindness, so don’t go all cancerzilla, just politely decline. Also, many of your friends won’t know how to talk about this with you. Cancer is scary and everyone thinks you’re dying whether you are or not. Only you can set the tone for how these conversations will go, and I promise most people will follow your lead. Hopefully.
- Say yes to the sweet things people want to do for you that seem oddly extravagant. Some of the dinners, vacations, warm, fuzzy blankets, and love gifts have brought me so much joy in the face of something that is not joyful. A group of my besties got together and have a cleaning lady coming to the house once a week. I’m an OCD lunatic when it comes to a clean home, and it has been phenomenal to know that I don’t have to worry about cleaning the house when I’m sick (because I will), and when I’m feeling great, I don’t have to spend that time cleaning my house (because I will). If you could see me right now, I’m prostrating before them in my mind shrine. Seriously perfect gift.
I recently spoke with a couple of friends who expressed how important it has been that we’re going through this together, and it is. I live my life with them, and they have borne witness to my pain, tears, joy, triumph, anger, and rising through this roller coaster of cancer. In the end we will have shared this experience, but as Rilke said “even between the closest people infinite distances exist.” I can no more share this experience completely with my loved ones than we can share any journey in our lives with another, even when walking hand in hand through it. They will never know the depths of my despair when it has felt like too much, the increasing desire to beg them to stop poisoning me and cutting me open, or the sleepless, pain-filled nights when I lay restlessly imploring the universe for mercy. And the fact is that these moments have been for me alone because they have been the moments where I’ve grown the most. What truly matters is that this loving group has spent the last year giving me the gift of their affection, time, and commitment, and although I know I could have done this without them, I’m immeasurably lucky that I haven’t.