And now to the real stuff…I always feel like I need to preface this with a ‘danger, danger, semi-not-so-happy stuff ahead’. Anyhow, I asked Craig how much he wanted to know about mom’s condition, and how much he wanted me to convey (through the blog) about his situation. He said he wants to know it all, and that he’d rather people know how he’s really doing. So, this is how he’s doing. (As Matt Holliday says, baseball’s day-to-day. So, too, is cancer. There are good days, and not so good days. These comments reflect an honest account of a not so good day. With hope, he’ll be whistling a different tune in the near future.)
“My pain seems to be increasing, and it’s a different kind of pain. I have to fidget around to find a comfortable resting position, and I’m always slightly uncomfortable no matter what I do. The tumors seem to be hitting the nerves, so when I move out of a position, or try to get up from the bed or chair, they tend to trigger. My hips and lower back are starting to hurt from all the sitting. My vomiting seems to be increasing, though I haven’t had a meal in over a month. I miss the days when I could drink unlimited amounts of water. Whereas mom’s situation is pain free and debilitating, mine seems to be painful AND debilitating. I’d like to go back to work, but if I get tired doing virtually nothing, I can’t see how I’ll ever be in a position to work. And I don’t want to mortgage my life out to the government by advancing all my leave.” – Craig (April 11, ‘08)
Even the shortest conversations seem to wear him out. He’s often unable to ‘visit’ with friends – in person or on the phone – for more than ten minutes. And when he is able to communicate, he’s often too drugged to remember what he said, or what was said to him. The doctors are considering Ritalin and more pain meds to help improve his quality of life, but he doesn’t want to ‘burn all his cards’ so early in the game. Pushing through the nausea and pain just exacerbates things, and makes him nauseous to the point of crashing. They’ve given him a fentanyl patch which seems to be taking the edge off, but it also causes drowsiness. The reality is the pain will be there unless we can a) remove the tumors through surgery or radiation; b) get the chemo to work; or c) dope him up on morphine. By default, we’ve had to go with the latter, which has its own drawbacks (e.g. fatigue). Dr. Stabler told C that if the tumors are still growing, than the Torisel is probably not working. Dr. Flaig, Craig’s primary oncologist, syas that the tumors have grown slightly, but that the Torisel may not have had enough time to do its thing. Craig is still scheduled to receive chemo as planned, which I think is a good approach. C agrees, and said that it may be premature to end Torisel. However, he also said that he’ll likely have to endure these symptoms (and others) until the end. While this was extremely difficult to hear, in a way, I was glad that he felt comfortable sharing. It’s back to the tricky balance of being hopeful but realistic. We don’t want to be so hopeful that we give Craig the impression that we’re out picking daisies in la-la-land. I don’t want him to feel any pressure to do anything more than what he’s doing. On the other hand, we’re cautious of being so honest with what the doctors say, or about his day-to-day symptoms and what they likely mean, that he loses hope. To write our reality in blatantly honest terms does not mean we’re throwing in the towel, or that we aren’t hopeful. Indeed, hope is what sustains us. We’re still looking for better days ahead, and believe they’re just around the corner. We’re cautiously optimistic, yet aware of the very real battle we have before us. For me, knowing the odds and trying to defy them is a heck of a lot easier than not knowing and having the rug pulled out.
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