There are a million things i still want to do. I want to close on a home of my very own; something gray or maybe blue with a little porch and an open kitchen. I want to find love again, feel the joy of revolving your world around the axis of another person who sees you as their moon and stars. I want to write a million poems, until the words spill out like flowers and gemstones, frogs and slimy toads like the maidens from the fairy tale, blessed and cursed for their kindness or cruelty by the beautiful fairy, disguised as the old woman at the fountain. I want to travel the world and feel the fabrics of a thousand cultures against my skin. I want to see the colors and smell a different way of living. I want to discover new fruits and vegetables and spices, new ways of cooking food and sharing experiences.
But more than this I want to bring this warmth back to my family's table. Growing up, the family dinner table was a sacred space: no one missed dinner and there were no phone call interruptions (or later cell phones) rude behavior, or fighting. It was a place for the celebration of perfect test scores and promotions at work. It was the judgment bench from which there was no hiding. The day's bad behaviors were measured and weighed, punishments and admonishments doled out as necessary. No matter the day you had had a work or school, once your rear end hit the seat at the table you could be assured of two things: 1) that you would perform your due diligence in consuming whatever was put in front of you, and 2) there would be no escaping a detailed explanation, interrogation, and sometimes even confession as deemed necessary by the law of the land.
As we all grew older, this tradition became harder to upkeep. As we graduated and left the house we left our empty chairs behind; their cream pads muted reminders of our absences that nicely complimented the green and mint trim in the kitchen. Dinners were taken less frequently together and now my little brother eats things like plain lunch meat that he likes to cut shapes out of. None of which is normal. I want to make dinner with everyone around the table. I want to roast a chicken perhaps, sauté some faro or roost some vegetables. I want to make batches of cookies and airy cakes as tall as dreams and watch their eyes light up when they try the first bite. I want to be remembered for all the extra love in those sweets.
But these days I get one shot a day to do something worthwhile. One shot to grocery shop, or handle a hold phone tree with verizon. I always push for two activities, sometimes I get really crazy and go for 3 but it is difficult trying to fit so much into my days. I have the same number of hours as everyone else (24 in case you were wondering) but my ability to to anything with them is rather limited down to somewhere around about 4 hours of active time. Just like a happily developing toddler. Of course again, like any good preschooler, I need to separate my activities with prodigious napping, or I tend to become very grumpy and lose my focus and patience at a rather alarming rate.
My natural impulse of reaching for the pantry during these testing times, whether it be the mounds bar or the tortilla chips, has led to a lifetime subscription to a generally unhealthy relationship with food. I eat emotionally or sometimes not at all; driven by the twisted logic that excessive eating will fill whatever sadness or anger void I am working to shovel through. I avoid eating all together under high stress situations, I struggle with my body image and being able to control what goes into my body and when, is an important (if entirely unhealthy) control mechanism.
Now, in these times, it is even more important that I grow past these issues to purse a healthier more sustainable lifestyle. Some changes are easy to make: I detest most fast food and almost never eat it, so taking it off the list is an easy one. I am working on dialing down the dairy and non-organic gluten products. I am also trying to up my vegetable consumption. While I adore fruits in all shapes, sizes, colors, and most flavors (here's looking at you papaya), I have to be clever about hiding my green things in unobtrusive places, like smoothies, to ensure I get my full servings. If I were truly dedicated, I would force some raw veggies into my diet: culprits like broccoli, carrots, peppers, tomatoes, and kale pack huge vitamin punches in their raw forms with the added bonus of being chalk full of cancer-fighting antioxidants.
It is these small battles that I fight during these long days where nothing ever seems to get better. When I win, they are poor little victories, faintly deserving of a golf clap. When I lose it means my bad choices make for even longer nights curled up around my malfunctioning liver as my insides try to work through a few too many ounces of brie or something equally irresponsible. Needless to say, not deserving of the golf clap. Today has been a special third kind of day which is neither a success nor failure but merely a struggle to get through till the sun goes down. It feels as if it ought to be about midnight and meanwhile the grey watery sunshine is still bearing down bleakly through the french doors; "the day isn't over" it whispers "it's never going to be over". So instead I write. I feel like this disease has taken a huge part of who I am, carved it out like an ice cream scoop and dropped it on the hot pavement to melt and run off in a sticky mess, sure to ruin someone's shoes another day. The fatigue has taken my sense of humor and quick wit, these days I mostly feel blunt and irritable- no time for jokes, no room for funny observations. My brain, once the cerebral equivalent to a fantastic spanish colonial style hacienda, chalk full of inlaid tile and guest bedrooms, is now filled with cobwebs and the pieces of broken furniture. The extra rooms, once vacant and left beautifully decorated, white linen shades blowing in the open wind, are full of cobwebs and the strange monstrous children of drug fueled dreams. They whisper warnings and words of encouragement to me as I wander the hallways but I don't have the heart to stop and look, try and understand their twisted words as they warn of the trials still to come. These children of my feverish dreams rub up and down my ribs with their pale fingers in the night, waking me up with icy cold needles up my side. You cannot close the door on these apparitions. They refuse to be ignored and their howling in the night should you try, sends them into a towering fury; before you know it they've broken into your room and hang from your elbows, crying and sucking what little life force you have left within you. When I am afraid that the shadows will never stop their howling and the sun will never again rise, I sing to myself from time to time. It doesn't stop the pain but the sound of my voice takes away the fear, gives me a moment of stillness, almost peace, allowing me to catch my breath.
Once I've caught my breath I can remember the way things used to be; the calm bountiful yard at home, bursting full of flowers, my runs in the sunshine feeling stronger each day, the endless gorgeous horizons of different opportunities just waiting to be played out into an extraordinary life. I desperately want all of that back. There is no one who will promise me any kind of return to normalcy. My bread and butter is "maybe", "no way to tell" and (my favorite) "with any luck", answers that give me absolutely no piece of mind or comfort but also make it very difficult for me to sue anyone (which I've come to believe is the primary goal of all medical institutions in this day and age). The only comfort (and it is a meagre one) is that they do generally apply sympathy pain pills following their failure to deliver useful information. After haven taken so many of them, the pain pills don't do too much to scratch the surface but at least they tamp down my natural awareness enough that their failure to treat me like a functioning adult is slightly less galling.
It is finally 8:00PM. This is exciting to me because it means its only an hour away from 9. 9PM is a decently acceptable hour at which to go to bed. Anything earlier makes me feel dangerously close to a senior citizen and gives me inexplicable urges to make under informed complaints about medicare, illegal immigration, and fox news anchors. 9 o'clock however means that I could be a highly contributing member of society (i'm not) that needs excessive sleep to keep her massive brain going. This is a nice though and I try to run with it as these days nice thoughts just don't roll through on the daily express like they used to. But in spite of cubes in my mind wrapped up in pain and self-doubt and hate, a sort of life or death tetris race to the top, I try to keep my chin up. I have the best support team any fighter could ask for, my parents and best friends keep me smiling, elicit a laugh or two, force-feed me my favorite foods, and keep me alive by threatening to kill me should I die. They love me unconditionally and aren't afraid by the handfuls of hair falling off my head or the horrible shrieking fits i have from time to time, terrified and angry with life and with death. Someday, when this is all through, I will have them with me still and find a way to repay the kind of divine goodness that saves a person's life. Someday, when all this has passed I'll be looking out or i'll be looking down with a serene smile, at peace at last, forever grateful, and forever in love with those who held me up when I had reached the end of my strength. I love you all. Alla famiglia!
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PS: thank you from the bottom of my heart from myself and my entire family to all of those who gave generously to our gofundme campaign. Just today we reached our fundraising goal which will make it possible to fund some of my current treatment and certainly much of the continuing systemic chemotherapy moving forward as we investigate participating in clinical trials and newer treatments that are in many cases covered only partially or not at all by health insurance. Your contributions will make a life-saving difference and I cannot thank you enough for the generosity and sincere good wishes and support from all those who have followed the blog or reached out through this difficult process. We love you and thank you! Further info on the fundraising campaign can be found here: http://www.gofundme.com/teamallison
much love,
Allison
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