The spring weather finally arrived, and there are so many things I wanted to do. On Friday, there were friends’ bands to see and restaurants to visit and people to hang out with. I stayed at home with my fatigue, aching bones, roiling bowels and chemo-induced indigestion. What I remember from the last time I took neupogen is that your skull is also bone, so I get headaches from my skull and jaw hurting.
Nothing on its own is that bad, but when it’s all going on at once, it’s enough to ground me for the night. I fell asleep on the couch a little after 9 pm while putting up photos of the one thing I was able to do— stop by the community garden to see my tulips and daffodils—up on Instagram, the phone still in my hand, jolting me awake a little when a buzz for a new comment appeared.
Yesterday morning, I headed up to the main hospital, where I was slated to receive a blood transfusion to boost my low hemoglobin. I was originally supposed to get a transfusion on Friday the 13th, an occasion that my inner goth girl enjoyed, but the hospital was too booked that day. On Friday, I got up at 6 am to do my saline infusion before work so I could possibly go out after work, but by 4 pm, I was having trouble staying awake. I had a rare free time without a needle in my port before placement the next day, and that always is a nice free feeling. I visited the community garden on my way home, a small consolation prize to enjoy the garden in the nice weather.
Either the chemo or the neulasta has been giving me night sweats, so after waking up a few times to change my drenched clothes and turn over my damp pillow, I got up early to make it to my 9 am transfusion. Some were getting a jumpstart on the first nice day in a long time, already in jogging clothes, coffees in hand. I remembered the joy of waking up early on a weekend for a workout, having the promise of a beautiful day stretched out before me. I tried to find that hopefulness, but it eluded me. Once I was called for my blood test, I waited for the results to determine if I needed the transfusion. I sat in the waiting room, remembering being wheeled by these suites as an inpatient during radiation and for tests, looking at the outpatients nibbling on graham crackers and sipping coffee, allowed to exist in the outside world.
By 10 am, I was told I didn’t need a transfusion after all, but because of weekend train construction, the usual train I would take wasn’t running downtown, and the other train I would take was running on an alternate line, so it took a few trains and buses and an hour and a half to get home. My little trip uptown zapped my energy for the day. On the last few buses, people were geared up for the day, heading to the parks and outdoor destinations, and I realized I had nowhere to go but back home to bed. I felt bitter. I passed a storefront that once sold funny items and a rubber chicken purse around my first round of chemo five years ago. It now houses a fancy relaxation store that urges passersby to rest with pricey good-smelling mixtures. It is the rest of well people, though, of companies that offer “wellness” as a brand, and for people to take breaks from their busy lives, not for people like me, who feel fatigue in their bones. It’s rest for the living, not the dying, who will have rest soon enough.
When I got home, I changed into my sleep diaper (just in case) and slept for more than an hour, then ate lunch and then spent the rest of the beautiful afternoon sleeping. By the time I woke up, there was a chill already settling in the air and by the time I put on real pants, I was too tired to walk for ice cream, so my boyfriend brought me a festive milkshake dotted with sprinkles home for me. I watched TV for a few hours hooked up to my IV before falling asleep again, getting up several times because of the nightsweats but too tired to change to dry pajamas.
Today is a gray day, and it’s been easier for me. I read a really great book by the friend of a friend, a fictional story about a little boy who dies of cancer because sometimes I just want to read about death and cancer. This weekend, I didn’t feel like I was part of the world anymore. No matter how much you can try to be optimistic or how much kindness people show or how much you or they try to cheer you up, being sick and dying is hard and it’s a lonely business. I owe people messages and emails and phone calls, but I haven’t had any energy all weekend. I haven’t even been able to make any progress on my end-of-life checklist and plans.
This weekend was one of the hard ones, as I watched people make plans, as I was too exhausted to engage with the world beyond books or TV. I’m tired of living like this, and I’m impatient to either get better or die. Sometimes the tedium of hooking up another IV or pulling more Immodium out of a blister pack seems like it’s too much to bear. This world doesn’t have much for me anymore and I long to be free. Sometimes, there’s not anything anyone can do and you just have to give in and cry and acknowledge the sadness.
