Open Water

I find myself re-reading some of these blog entries to remind myself of what just happened. It feels like a slow motion sucker punch we've had 11 months to prepare for, but the blow still knocked us off our feet and hurts like hell. Yet, even reading events as real and close to me as the freckles on my skin, I feel distant and removed. The numb feeling is horrifying, the silence of thought deafening. Then I remember--there's Craig--and the silence and the numbness somehow make sense. The time to mourn mom is shared with the equally powerful and pressing need to take care of Craig as we did mom. We promised her we would. And, as we've learned, there is no downtime for cancer.

Last Monday, prior to Craig and Emily's departure for Oklahoma, Craig's blood work showed that his red blood cell count was once again in the normal range and his liver enzymes had stabilized, allowing him to travel. He had his blood drawn again on Thursday and we learned the results yesterday. Evidently, in only a few days, his liver functions worsened to a point that his doctor recommended we reduce his chemo load to half the original dose. His liver is functioning such that a half dose of the chemo would be received by the liver as a full dose, meaning that the liver cannot tolerate a higher dose of his chemo (and the cocktail of other drugs). By all accounts, it would appear that there is a drug interaction of some sort that might be affecting his liver. He takes a baker's dozen worth of other drugs that metabolize through the liver (at least most do). This coupled with his "high octane" nutrition (highest protein, lipid and calorie count given to one of Dr. F's patients) would surely throw a wrench in the "little engine that could".

The conundrum is that we can't readily reduce the assortment of anti-nausea, pain, and hiccup medications -- or the TPN, for that matter. The medications help quell the vomiting, pain and hiccupping that once plagued Craig. Though, as his doctor says, he's completely debilitated from his cancer -- i.e. from the lingering nausea, pain or extreme fatigue that keeps him from certain activities -- he doesn't vomit NEARLY as much as before.  He vomits about 1-2 times daily versus 7-8 times, and he's not experiencing nearly as much pain. Yet, those extremes lie just under the surface of stability. Subtracting one medication might throw off the precious balance that has given him some quality of life. That's true for the TPN, as well.  His body needs such a high protein, calorie and lipid level to maintain his quality of life. Any tweaking might throw off the precious balance we've found with his ever fluctuating weight.

For me, the symptoms are akin to the movie Open Water where, every so often, a shark's dorsal fin would pierce the water's surface as a "red flag danger" that something's amiss. Then, just as quickly, it would disappear, leaving one to believe that the shark was gone, never to return. But, a look just below the surface would reveal that it was simply lurking all along, waiting for another reason to pierce the water. Fiddling with the medication would be like throwing chum in the water for all the symptoms to surface. The one variable that can be shifted is the chemo.

It is hard to know whether the half dose will give the tumors the leg up needed to take off on that upward trajectory again. It seemed we were striking one of those precious balances with the tumors, as well, so there is a level of anxiety (at least for me) that a half dose won't pack the punch needed to slow the cancer. But, his liver is straining regardless of tumor growth and is now of paramount importance; he can't do much to "fight cancer" if the liver is failing. It's a riddle, no doubt, and now we need to strike a lucky balance that will simultaneously keep his symptoms at bay, slow the tumor growth, and oh by the way, heal his liver. Craig has an exceptional care team; we're hopeful at the same time we're realistic. Whatever the case, we'll take care of him as we did mom--ever vigilant, ever mindful of his wants and needs, ever loving. ~E