So, we play this torturous waiting game, "just a few more days," until Bob meets with the neurosurgeon on Monday, which is tomorrow, only one more day. I arrogantly say "we," because we're in this together, right? But the reality is, I have absolutely no idea what Bob is experiencing. At all. Not one iota. And what's a few more days, right? I can't help but think, "a few more days" is a big deal when you've been bedridden for over two months, have no appetite and are wasting away. . . "a few more days" is a big deal when you can't work, can't get together with family for the holidays, can't go out and take a walk in the new-fallen snow or fire up the snowblower . . . "a few more days" is a few more days of simply existing, not taking part in life . . . "a few more days" is a big effin' deal when you've "kinda, sorta" been diagnosed with cancer but don't know how it's going to be treated or how many more " a few more days" this could drag on. . .
I have had the long weekend off for Christmas, but have spent most of it alone. When I'm with friends or family, I'm alone, as thoughts of Bob and going on with with him back at home prevent me from fully engaging with those around me. When I'm home, I'm alone, because I can't be near Bob, as he needs to be lying down to keep the pain at bay; I can't lie next to him, because I could easily hit his bad leg and send him into a tailspin of pain. I can only kneel by the futon and wrap my arm around his shoulders and kiss the back of his head, and ask, as I do over and over, is there anything I can get for you or do for you right now? I am, in a word, useless.
But his loneliness is unimaginable. I can't help but think that what Bob is living right now is what "unbearable lightness of being" means . . . he hasn't worked in over two months, he cannot sit to watch TV, or to read, or work on the computer. Other than me and a handful of medical professionals and a couple visits from his parents, he has no contact with anyone in the outside world. Television and his Blackberry keep him in the loop. We haven't slept in the same bed together in over two months. It's hard to embrace him, hold him in my arms, because it's too easy to brush against his affected leg, which would send searing pain down his side. When he experiences flare ups, the pain possesses his body, renders him speechless for several minutes, takes over all other senses and functions, until it finally passes.
The pain in his leg comes more frequently now when he's standing—less than a minute—before he has to lay down and give it time to subside. And so, he tries to stay off his feet as much as he can. I try to go about my life, business as usual, but his absence from it is glaringly obvious. I get irritated with the repeated question from family and friends, "How's Bob doing?" I know people are genuinely concerned, and I appreciate the love and support and offers for help more than I can say, but my answer is always the same: nothing's changed since the last time you asked, a half hour ago, yesterday, last week, last month. I have nothing to offer.
Bob has missed out on Thanksgiving and Christmas, and now today is his birthday. He asked his parents not to come up to spend the day with him, because he said he can't do anything but lay around, so what's the point. As he's said numerous times, he doesn't want to be the animal at the petting zoo, on display but not able to do anything.
Today, my gift to him is to try extra hard not to get impatient or take anything he might say too personally. To stay on top of things, get done what needs to get done, so he's not worrying about anything unnecessarily. What I'm beginning to understand is that chronic pain trumps all other senses and functions of the body; it's always in the forefront of one's thoughts, muscling every thing else out of the picture. It's all-consuming, affecting every last thing a person thinks, says, does; when a flare-up occurs, all else is obliterated by the single effort of getting through the wave of agony that washes over the body. It's an ongoing challenge to stay ahead of the pain (instead of chasing it), by timing medications just right, and staying off his feet as much as possible, but there's a constant fear of becoming addicted to the pills that keep the pain at bay. And, a guy has to eat, and shower, too; trying to get those things in before the pain kicks in is a constant race against time. Chronic pain an unrelenting, cruel dictator that, at least for the time being, has taken life as you knew it, away.
So, right now, we have no choice but to play the waiting game. Thanks to the holidays and the timing of Bob's diagnosis, there's nothing we can do until tomorrow. Waiting is my torture, my personal hell on earth, always has been. I abhor waiting (kind of ironic, for someone who's chronically late for everything . . .). My mind starts wandering, certain thoughts start taking over. I hop on line and start reading about sarcoma, at first, believing that knowledge is power. However, at this point, since we really don't know squat, reading all kinds of stuff on the internet does nothing but fuels my fears and nightmares. We've been told that Bob's condition is "consistent with sarcoma," but to me, that means it isn't 100% confirmed, right? As such, my mind goes back and forth, from being optimistic, that means there's a chance that this might not be sarcoma, to despairing: why would the doctors at United call on the Mayo Clinic if it wasn't cancer . . .
We don't know much of anything at this point about Bob's sarcoma (if, indeed, that's what it is . . . see, there I go again), other than what I've gleaned from the American Cancer Society's website. That it is a form of cancer that attacks tissue of the body. It can attack soft tissue or bone; at this point, we don't yet know if what Bob has is soft tissue sarcoma or osteosarcoma. We have to wait to find out exactly what type of sarcoma he has. We found that it's a rare form of cancer (less than 1% of all cancers are sarcomas), and that there are about 50 different types of soft-tissue sarcoma. The treatment is based on what type it is, and where it's located in the body, and the size of the tumor. Some types of sarcoma are localized; others have the ability to spread to other parts of the body. Some, depending on the location and size, are treated easily and with success; others not so much. We don't know for sure if it's just the one tumor, we don't know if it's slow or fast-moving, we don't know exactly where it is in his sacral region .
Because of all the unknowns, I simply don't know what to do. Maybe it's a very treatable form of cancer, like prostate cancer, or Hodgkin's. Maybe it's not. It's a constant battle to keep certain thoughts out of my mind, to push them far away. I have a tendency toward "worse case scenario" syndrome, and have to do everything possible to keep that in check. Until we know more, going into hysterics is useless, detrimental. Hell, even when we do find out more, going into hysterics is useless. We don't know anything, really, and all we can do is sit and wait.
I think Bob, in the midst of his pain, his two-month-and-counting solitary confinement, and being the one with the diagnosis, is handling this better than I, at least mentally. He seems to have it more "together," he's more rational and logical, at least that's how he appears to me.T ake the snow-removal incident. I played the victim, he saw the situation for what it was and what needed to be done. And if I hadn't begrudgingly gone out and shoveled and snow-blowed (snow blew? hmmmm . . . ), he would have done it himself. Bum leg or not. That's how he rolls.
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