This is the twenty-fifth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of cancer treatment.
We found a rhythym in Bloomington, which was honestly a great city. The people were friendly, the Target was crazy well stocked and clean, the library was incredible and hosted weekly Chinese lessons for kids. If you had to be away from home for cancer treatment for your child, Bloomington, Indiana was not a bad place to be.
Donna was doing well, thriving really. After the tongue debacle and a few more days time to get used to her new sedative, our days became predictable. (Interesting fact: Donna got a dose of Propofal every morning — the same drug that was the cause of Michael Jackson’s death.) I would wake each morning, wash and dress myself quickly and quietly, run to the kitchen to make Donna some portable breakfast, usually involving peanut butter, get back to the room and wake and dress both kids, and head out by 7 a.m. each weekday.
A lot of time we had family staying in the room next door, so they would be with Mary Tyler Son in the waiting room while Donna and I went to a cot outside the cyclotron room. This is where the Propofol would be administered. It looked like milk snaking its was through Donna’s tubey into her port. Within seconds, I would watch her nod off as I whispered into her ear, “Never forget that you’re amazing.”
Her treatment would take only about fifteen minutes, which was when I would nurse Mary Tyler Son, before they called me back to recovery to be with Donna. She woke groggy and hungry. She ate her prepared peanut butter feast while I read her three books. She got super picky and cranky about the books and which order they were read to her. I learned early on that for fifteen minutes or so, she was the boss.
On Mondays and Fridays, Mary Tyler Dad was there, so we would be together. On occasional days, I was alone with the kids and Mary Tyler Son would be with me, or a grandmotherly type would care for him while I was with Donna in recovery. Looking back, it’s kind of shocking how many arms held Mary Tyler Son in his first few months. Thank goodness for the kindness of friends and strangers alike and thank goodness that, like his sister, he was such a considerate baby.
Our medical obligations were generally over by 10 a.m. or so. The rest of the time was ours. Donna always enjoyed a bigger breakfast when we got back to Jill’s House. We would do errands, play, head out to see the sights of Bloomington. There is a great kid’s museum there that Donna adored and the town is within minutes of hills and farms, so some days we would just drive into the country and look at cows. John Mellancamp, a hometown boy, would inevitably play on the radio.
The afternoons were my favorite. The two kids and I would retreat into our room. Donna would get some books before her nap and easily nod off. Mary Tyler Son would nurse in my arms and then we would nap, too. A nap every day is not a bad thing. Our window had western light, so we would all wake as the sun shone bright and warm. It was spring, which to me is such a hopeful time of year. I loved those afternoons. They were lazy and cozy and restorative.
Mary Tyler Dad had a different routine. After Monday morning’s treatment, we would head back to Chicago for the week. He was alone at home, working, fretting, and lonely. His afternoons were neither lazy nor cozy. On Thursday evenings he would make the five hour drive back to Bloomington, getting in about midnight.
For the first time in Donna’s treatment, there was tension between us. The kids and I had one routine that worked for us, then Mary Tyler Dad would come in for the weekends and that routine didn’t always work when we were together. On the weekends, I wanted to be lazy. Getting us up and out by 7 a.m. was tough. He liked to walk the mile to the treatment facility, while I preferred to drive. Every minute counted in the morning and I didn’t want to use twenty of those minutes pushing a double stroller through the chilly morning. You see, I’m fundamentally lazy. To my core.
Mary Tyler Dad also liked to schedule things. “What time are we going to the park?” “When will you be ready?” “How soon until we go?” He wanted, and needed, to maximize those days with the kids as he missed them so when he was in Chicago. Lolling around until 11 was not his idea of a good time.
Food came into contention, too. Having cooked most days or eaten food another had cooked, I was ready to hang up the apron and get out on the weekends. This was much easier with two of us, so I liked to eat out. Mary Tyler Dad, alone all week and working later hours to compensate for his time in Bloomington, wanted to cook and eat at Jill’s House. Push me, pull you. It was tense. And don’t forget, we were never alone to work any of this out. When we were in the room, the kids were there. When we were out of the room, a dozen set of older couples were within feet of us. The tension threw us both for a loop.
Donna struggled with this aspect of our time, too. She missed her Dad something fierce, but it was confusing to have two separate routines. Toddlers need consistency. We tried, but I’m not certain if we ever worked it out in the twelve weeks we were there. Sigh. I still feel guilt thinking I did not do enough to make Mary Tyler Dad’s time in Bloomington easier for him. The bone crushing fatigue plagued us both. We tried, which is all we could do.
During this month, the kids and I traveled back to Chicago for scans in preparation to start spine radiation. Exact measurements of the lesion on Donna’s spine needed to be done and could not be scheduled quickly enough in Bloomington. Oddly, neither Donna nor I really wanted to go back to Chicago. It felt a burden to us both, a disruption of yet another routine. Gratefully, Auntie was in town and made the drive with us. Around about Gary, Indiana, an hour from home, Donna got feisty in the back seat. Really feisty. Wailing and thrashing feisty.
I likened it to an astronaut prepping for his reentry back into the atmosphere. Donna worried that Mary Tyler Dad would not be at home. She worried we would miss him on the road, thinking he was driving to see us in Bloomington. It was hard. And loud. And only stopped a few minuted before we reached our back door. It was one of the few windows we had that the disruption of living someplace else for treatment was hard on Donna. I feel so humbled when I think about how much she loved to please her parents. I wonder what price she paid for that.
These two photos show Donna conquering the big girl swing out back behind Jill’s House. I have such fond memories of folding our laundry and looking through the window, overlooking the swing set. Donna and my two boys would be just below, Mary Tyler Son napping and Donna and Mary Tyler Dad just having the best of time together. I can hear her laughter and almost feel the breeze that swept past her cheeks as she swung through the air, so proud of herself.
Tomorrow: Infection
Mary Tyler Mom 