This is the twenty-eighth 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.
During this period, Mary Tyler Dad and I opted to step inside what we called The Bubble. The Bubble was a happy place. Donna was with us there, so was Mary Tyler Son. Cancer, the bastard, was not invited. Yes, The Bubble was invitation only and it was an exclusive affair. There was only room for four, so even close friends and family had to watch us from outside. In The Bubble, it was always a perfect 75 degrees and sunny -- kind of like San Diego.
To be with Donna could be heartbreaking, and sometimes impossible, if we allowed ourselves to think about her death. We learned to detach from the reality of her dying in her presence. I think, if we were different parents, it could have easily gone the other way -- detaching from Donna. That was unacceptable. She was like a joy magnet. She kept us grounded. She made everything bearable. Mary Tyler Dad explains how The Bubble worked:
You know, I'm able to forget how the situation is... that we're teetering on the brink, with no way back when we fall. It's terrifying, of course, but it also reminds me to take as much delight as I can. I love talking to Donna. It breaks my heart that I can't remember every single conversation we have, word for word, because they bring me such pleasure. It's easy to be exhausted, but it's also easy to be delighted, and it's vital to keep my head straight to let myself feel that delight.
The Bubble also had nothing to do with denial. Mary Tyler Dad and I knew exactly what was happening. We talked about it and sometimes allowed ourselves to imagine it together. One day he recounted how he felt after taking 6-month-old Mary Tyler Son for a walk to the park during Donna's nap, "This is how it will be. This is what life will be like without Donna." We both flirted with those thoughts. Full disclosure: I had flirted with those thoughts since March 23, 2007. Part of how I cope with hard things is to imagine them, try to feel and anticipate them, get comfortable with them.
(Note to Cancer Parents: Baby legwarmers are fantastic picc line covers; Donna had a whole wardrobe of them that made her happy.)
So, yes, denial was not in play, but our defenses were alive and healthy. The Bubble, because it was our defense, worked beautifully. I have some painful memories of not being very good at communicating with my closest friends or Donna's other family during this period. In their voices or their eyes I could see their profound sadness and loss. I am ashamed of this, now, but shut myself down from that. It was protective. And, crazily, I felt responsible for their sadness. I chose The Bubble because it was better. Simple as that. Donna's sadnesses were related to silly things like having to get out of the tub too soon or Mary Tyler Son gumming up one of her books with his teething. Those sadnesses I could handle. We worked to maintain a schedule during these weeks, to create structure and normalcy for Donna. The medication schedule called the shots, but we did what we could to work around them. Normalcy and a schedule meant Mary Tyler Dad left for work in the mornings, me and the kids ran errands. That helped preserve The Bubble, too.
Sometimes, in the midst of the most mundane tasks, The Bubble was at risk by my wish to inform the folks we came in contact with with just what was happening. Our dry cleaner or the nice lady at the McDonald's drive through window or the cashier at the grocery story. I fantasized completing our brief interactions with something like, "Hey, you know my daughter has cancer. Yeah, and she is dying. Right now her cancer cells are duplicating at an alarming rate and it will kill her. Soon. Isn't that messed up? I know, she looks perfectly fine! Okay, thanks, and have a nice day!" Sigh.
During this month, Donna was the first child from Children's Memorial approved for a new respiratory therapy meant to influence her immune system to fight the cancer cells specific to her lungs. MD Anderson in Texas was calling the shots, e.g., running the study, and allowed Donna to use it under compassionate care standards, or off-study. We were told she was the youngest child to receive it. It is twisted when you hear that and feel a sense of pride. The drug was Leukine (sargramostim) and it was delivered via nebulizer. Because it was so toxic and I was nursing an infant, the treatments were given outside on our deck in the open air. Mary Tyler Son and I could only watch from behind glass. Donna would sit on her Daddy's nap, studiously watch Dr. Seuss's The Grinch Who Stole Christmas and Horton Hears a Who, and hold a purple dragon mask over her face while steam, the toxic treatment, escaped out the dragon's nostrils. This was a learned skill for Donna, who historically hated masks. She did what she needed to do. As we learned from one of her favorite books at the time, this made her brave. Yes, my girl was heartbreakingly brave, each and every time it was asked of her.
Our days became a bit of a maze working around medications, but still, Donna's quality of life was excellent. She was sunny, funny, clever, bright and feeling well. She loved her brother and liked nothing more than to stand over him and make him laugh with her protracted spelling of his name. It never failed. She would shout his name, then proceed to spell it, with squeals of delight pouring out of her baby brother. The more he squealed, the more Donna rolled her letters. That 6-month-old baby boy loved his sister so. His eyes would naturally gravitate to her whenever they were in the same room. They loved one another.
Often during these weeks, I would have to cancel or postpose hospice visits. Technically, they were palliative visits, as Donna remained on treatment. The fact that it was understood the treatment would not result in cure was immaterial. The nurse or social worker would call and ask to come by. "I'm sorry," I would say, "We're off to the acquarium, zoo, dinosaur bone museum, insert-attraction-of-your-choice here." They were imminently patient with us and I was grateful for that. God bless home nurses and the work they do, but that job is just inherently difficult to schedule. We knew from years of experience that if you schedule a home visit, you will wait. Donna was too busy to wait. She did not have time to wait.
Donna's fourth birthday was this month, too. As lovely as The Bubble was, this birthday, her last, almost broke me. I knew there was a lesson to be learned in having a terminally ill daughter who did not feel sick, but trying to learn that lesson with the artifice of "HAPPY BIRTHDAY!" was so very hard. It felt cruel. Donna's birthdays had never been easy. On her first, I was downed with a migrane. On her second birthday, the idea of a third was questionable. On her third birthday, we were planning a surgery just days later, thinking a fourth was unlikely. On her fourth, we knew she would not see a fifth. During these days, Donna started using the phrase, "When I'm 8, I will do this," or "When I'm 10, I can do that." A piece of me died each time she said it.
But Donna did not know her fate. She was a child proud to be growing up. She was 4! She deserved a party. She wore a hat. We had some playmates over to build pizzas. We smiled and ate cake and celebrated. We went to the joy with Donna, clutching The Bubble the whole way.
Tomorrow: Whiplash
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