The monster under my bed isn’t your typical monster. It’s small, unassuming. It barely looks scary at all. But I know how it operates. I know what it can do.
It’s been under my bed for three years now because I haven’t been able to bring myself to get rid of it. I should have thrown it out a long time ago.
Last night, I pulled the huge clear storage tub that I use as a parental medicine caddy out from underneath my bed because it was past time for its yearly cleaning and reorganization — you know, shredding old records and receipts, categorizing the ones we still need for taxes, wading through the pond of empty prescription pill bottles, making note of the refills and tossing the rest, checking Daddy’s current supply on hand, etc. (It was always so much easier to keep everything pertaining to Mama and Daddy’s health battles all together in one place.)
Near the end of my task, I saw one of the two things I’ve kept around since Mama succumbed after a six-year-battle to her cancers in 2012 — a small bag of the wound dressings, sterile gauze pads, and swab-sticks that we used after her autologous stem cell harvesting in 2007. The gauze is perfectly usable, but there is something about keeping it sealed and exactly the way it is that makes me feel physically closer to her, as if she’s only in another room. (Well, I suppose that is the truth, depending on how you look at it.)
And then, I saw it. The second of the two things. The monster.
It still sticks in my craw, how in a six-year span my strong, gorgeous, I-have-a-gentle-soul-but-I-will-hurt-you-if-you-mess-with-my-family Mama fought off mycosis fungoides, multiple myeloma, breast cancer, temporary steroid-induced diabetes, endured radiation, chemo, blood clots in her lungs, stem cell harvesting and the transplant itself, was cut on and cut on and CUT on and beat all of this crap into submission in record time… Only to be laid low when this unassuming little pill came on the scene.
When she unexpectedly came out of remission right after Thanksgiving in 2011, we were confident and ready for war. It never occurred to us that we wouldn’t kick the myeloma’s ass just like the first time. Just like the breast cancer. Just like the “Red Devil” high-dose chemotherapy and everything else. Her body was a miracle machine that had even her doctors stunned with its ability to bounce back. And so, Revlimid treatment (something we’d never used before but had to this go around) began.
We weren’t prepared for how fully this stuff took away all of her strength. Within a week, Mama could no longer walk or even hold a coffee cup without dropping it and burning herself. We had to physically carry her around the house. I wanted to take her off of it immediately, but I was afraid of the myeloma. When I called her oncologist for advice, she was out of town and the office suggested a general practitioner see my mom. I didn’t like that idea. Dr. Lynn was the best of the best, and I only trusted her. So, the office suggested we wait until the next week when she’d be back. After explaining the situation in detail, I asked if I should just take Mama to the hospital ER because if they thought things were grave, I absolutely would. They said no, it should be okay. So, I sat tight.
Sometime during those next few days, I wasn’t having it anymore and took Mama off of the Revlimid myself.
As soon as Dr. Lynn got back, we were in her office like a shot. She took one look and sent us straight to hospital admissions. The last hug Mama and I ever shared was at the hospital entrance, when I lifted her up to her feet from the passenger side of the car. She was scared because she could in no way help me hold her weight up. I told her not to worry because no way in hell was I going to let her drop to that pavement. If we fell, we’d go together.
I still remember the wonderful strangers standing around outside who ran to help and brought a wheelchair without me having to utter a word. They just came. I’d never felt so grateful in my life.
Anyways, a week after that, the myeloma (probably pissed off and embarrassed at getting its ass soundly whipped before) had gone to Mama’s brain and put her in an irreversible semi-coma. One night, she was laughing and joking with us. The next morning, she could only moan and never looked at me or said my name again. She would desperately whisper about wanting to go be with my baby bro and her mother, and how something she was “seeing” was so pretty. December and January passed without her decorations and holiday traditions for the first time, at the hospital, and in a blur.
Daddy was in very ill health, so as it had been for several years, Mama’s care was all up to me.
Dr. Lynn and I put her into hospice two days after New Year’s. She stayed with us for a week before leaving to seek out Barry and my grandmother in her personal heaven.
Guilt is an unforgiving bitch. I don’t know how long I blamed myself for killing her. For making her final weeks hell, blaming my decisions surrounding the Revlimid for her death. If I’d only done this. If I’d only done that. How she must have hated her stupid, helpless daughter as she lay there dying, the stupid daughter who finally put her into hospice to die. It took about a year and a half after her death, I think, for Dr. Lynn and my godmother Joyce to finally break through my nonsense. Even if she’d never taken a dose of Revlimid, the fast-moving myeloma would have caused the same catastrophic event in her brain. The two things weren’t connected and there was absolutely nothing I could have done to change the outcome. I didn’t deserve the torture I was inflicting on myself. I’d been a good caretaker and the best daughter my mom could have wished for. You haven’t abandoned someone to hospice if you’re still there with them every day.
I hadn’t abandoned her by leaving her body with the funeral home driver and going home to Daddy. (I remember the walk to my car, the longest walk of my life and it felt like I was going to the guillotine. I remember sitting in my car in the cold, waiting for the funeral home driver to leave with her after he promised me he’d take good care of her. I waited, and waited, so I could follow her out and still watch over her. I finally left when I was too exhausted to wait any longer.)
I had done the best job I could, made her proud, and she would never hate me, no matter what.
They were right. I’m in a better place now. But days like today, when Mama would have turned 77 or when I pull the monster under my bed out into the light, can still be difficult to bear.
This little bottle of capsules has saved many a life and will save many more. This is not a post against Revlimid usage. Rather, it’s about how the monsters in your mind don’t always have fangs and claws and shouldn’t be monsters at all. But, hey, the human mind is its own master. It is what it is. Sometimes, it can’t help remembering and pondering that thing that it knows is under your bed as you pull the covers up underneath your chin in the darkness.
Back underneath my bed you go, little bottle. Until I’m good and ready to finally throw you out.
Happy birthday, Mama.