Club Complicated

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Extra complicated: A big family trip/rendezvous in Utah, between chemo and surgery, with an infant and donated breastmilk. This was a peaceful moment, on a sunset hike in Zion NP.

No matter who you are, or the state of your life before cancer, this disease makes things complicated. Of course this is relative, and the experience of treatment can be less involved for some and much harder to tolerate for others, but the basic implications of a diagnosis are that you have been initiated into an exclusive club. There are lots of spoken and unspoken rules, unpleasant requirements, frequent meetings and steep dues, all revolving around survival. And while you don’t have anyone you need to impress, by nature of your initiation, you want your oncologist to like you, to know you, to be rooting for you, whatever your prognosis. It is tricky to sort through it all, to acclimate and to balance your membership with the rest of your life.

While it is not competitive and each person’s experience is unique and valid, my specific chapter of the club is an especially selective and demanding one. Think lots of hazing and few promising benefits. Inflammatory Breast Cancer is rare and aggressive, and especially because I had residual disease after chemo, my prognosis was/is not great. But I continue to choose not to focus on that. I choose instead to remain as easy going as possible and focus on life, the day-to-day, with as-needed adjustments for all that the club requires. Treatment and recovery is ongoing, even over a year after diagnosis and 3 different sets of chemo, mastectomy and radiation. It has tapered off to a daily pill to prevent recurrence, some lymphedema and inconsistent physical therapy. I am slowly reclaiming the simple life I have worked towards for a good part of my adulthood.

Settling on a small island and having a child were the biggest jumps to becoming truly low maintenance, but it started with moving around, traveling, and finding joy in spending my time and money on experiences instead of stuff.  I reached a point where I was prioritizing quality over quantity, across the board. I would rather be eating, sleeping, or adventuring than doing my hair or make up. Some people can pull off both, but I am not that organized or successful at managing my time. While life is slow and quiet on Orcas by nature, staying home with my baby and losing my income made our budget very tight and our life that much simpler. Our daughter became the focus of our lives and our big outings were a run to the grocery store or an afternoon stroll to the beach. She didn’t care if I was in pajamas or hadn’t washed my hair, and neither did I. And then I got pregnant again.

Even though routine prenatal care put me and my baby in a dull sort of spotlight, it was nothing that could even begin to compare to the high beam of cancer. My diagnosis shifted the attention to me. Lots and lots of attention and care. Well, me and my cancer. All of a sudden we were caught up in a whirlwind of medical jargon and life or death decisions. All of a sudden I needed so much, and being pregnant made it that much more involved. A perinatologist (OB specialist) teamed up with my midwife and my oncologist, nurse coordinator and social worker were all in the club. Although the attention was mostly aimed at my physical body and from a very medical perspective, the emotional impact couldn’t be ignored. And while I still haven’t seen a therapist, there have been all sorts of supports in place as I maneuver through treatment and the fall out. This meant asking for and accepting all sorts of help, physical, edible, and financial. People to help with the kids, the house, the meals, and the regular overnight stays away from home. This meant I could justify taking time to myself and purchases to make life easier, like lots of new pillows, comfy clothes and whatever food seemed appealing at the time. A smart phone and even a new computer made their way into my possession, because, well, life is short and I could use them now. I wish it didn’t take a health crisis to force me to make some decisions and do what I want, the complications of cancer made this relatively easy.

After all the time I spent settling into second place behind my first child, this new club felt selfish.  It turns out my standards had become fairly low, as my meals were usually eaten standing up or after a child, my clothes worn for days on end, and my showers even less frequent. I can still remember a time when I spent tens of minutes on my appearance on a daily basis, but that feels like a lifetime ago. Shaving and make-up have long been a thing of the past, partly because I would rather sleep and partly because I just got more comfortable in my own skin, just as it was. I actually found over time that the less products I used, the better off my skin was. Deodorant included! Call me a stinky hippy, but I definitely have clearer skin and smell less now than when I was showering all the time and using all sorts of stuff on my body. Return from the tangent.

Part of me wishes I had kept a tally of every appointment, every exam, every blood draw, every blood pressure and weight check. Every minute or hour spent traveling and waiting and looking for parking and riding in elevators. Every conversation with a nurse and doctor and a nurse again. Every question and debate and set of tears shed over every major treatment decision. Every time I had an infusion, in pre-op, surgery and recovery, and on the radiation table. Every time I changed into an awkward oversized gown, again and again, and waited in a cold room behind a curtain. Every phone call from a nurse or a scheduler trying to coordinate it all, considering the ferry schedule and nap times. And it all had to line up or one thing relied on another. So many moving parts and so much time and energy spent focused on me, or around me. My cancer is demanding.

How am I doing? Alright. How is it going? Shitty, but fine. Do I need anything? Everything and nothing. Do I have any questions? So many, but none I can articulate in this moment. It is all a blur, I tell you. And a rollercoaster. The stakes are so high and the feelings so intense as you muddle through the ups and downs of club life and normal life and that big gray area where they overlap. I have been mostly living in the gray. And at a certain point early on, I just needed space, to zone out and be distracted, to try not to talk or think about myself. Seriously, my cancer is high maintenance, but I am not.

At least I can thank my cancer for showing me the love, care and generosity of others, and that self care is a necessity. Self-care is hard when you are already receiving regular medical care, but even more important. Sometimes that meant getting a massage or eating a bag of gummy bears. Sometimes that meant days on end in bed, binge watching some Netflix. Often times that meant some fresh air and a walk. Sometimes it was in the company of my kids, but more often it was alone time, and not just a few minutes behind the bathroom door. I needed space to just be and breathe, without any attention. Living a quiet life in the country made this easier, but having a new baby and traveling a long distance for treatment made it harder. For a while I transferred care closer to home, and it was certainly nicer and easier, but my treatment suffered without consistency. We are all better served by doctors we feel good about, doctors who feel like our advocates, who we can talk to, and who know us and our histories well. Sometimes you can’t find that close by. Silly me, thinking I could cut corners or have it all. Every oncologist and cancer center is their own, just as my case is unique and yes, complicated.

Chemo barely touched it. A mastectomy, just enough to get out what we know about. Radiation, well I had to get zapped but also let’s throw in another round of chemo with that because it might work better. Hormone therapy? Why yes, let’s even double up the doses because my body won’t cooperate. Scratch that, let’s do another surgery, get those ovaries and tubes out. Menopause, guaranteed. And still, if you want a solid chance that it won’t come back, its 5 years of an Aromatase Inhibitor drug. I am gonna take a pill for over 1500 days because I need to learn some discipline. My cancer is persistent and uncompromising and I realize it could be much worse, all of it.

Somehow I feel like I have held onto simple, despite the demands of the club. Maybe because being the patient is more straightforward than being the patient’s family and friends. Maybe because all these things have happened to me and sometimes that is easier than watching it happen to someone you love. Maybe because I was already lazy and that has been enhanced with fatigue. Maybe because of all the help, I have managed to remain sane and mostly calm through it all. I have the luxury of just being who I am from moment to moment and day to day because others have picked up my slack and my kids are only just now beginning to judge me. Maybe because I have gotten better at letting go, being honest and not apologizing for who I am or what I am going through. It is often a mess. I am often a mess. But this club is only part of my life and I am busy reclaiming the dullness of the rest. To all the patients and survivors looking like nothing is going on, all put together, documents in order, club lingo down, attending to their kids and jobs with patience and kindness, doing housework (HA!), exercising (HaHa)-I am in awe of you. You are amazing  and I am still learning.

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