Goals

Craig has a palliative care nurse who visits every week to assess "quality of life concerns" such as chapped lips, split tongue, intractable hiccups, vomiting, relentless pain and the like. She visited Craig two weeks ago during the time when his speech and breath were still interrupted by unstoppable hiccups, and asked him what his goals were. In between hiccups, he highlighted the primary "goal", if you can call it that, which was to continue treatment---to let Sorafenib have a longer period to 'prove its stuff' before being fired a la Donald Trump. He also named four, more immediate goals: 1) to play harmonica again; 2) to be able to go on walks outside; 3) to return to the outdoor and athletic activities he loves; and, 4) to return to work at least part time. That week, really the next day, the hiccups lifted and within days he was playing harmonica again. Check mark! Last week, Craig and his best friend Steve went on a walk down the 16^th Mall. Check mark, again! In a little more than one week, Craig was able to achieve goals that, at the time, seemed unrealistic to him.

Now those achieved goals---harmonica playing and walking---have become much more than mere goals. They are imperatives to his health. Craig's visit with his urologic oncologist last week indicated that he's lost considerable muscle mass in his legs, and has been given a "prescription" for four, ten minute walks per day. Tears filled his eyes immediately after the doctor discussed his muscle wasting and the need to walk, and I couldn't help but tear up at seeing his pain. In an exasperated voice, he explained to the doctor that he's absolutely tired all the time and can't help but sleep. "Right when I get home, the first thing I'll do is crawl into bed", said Craig. Dr. Flaig rolled over to him and put his hand on his knee to comfort him. He said it's not Craig's fault by any means. This happens, especially when lying on one's back most of the day and the drugs are doing that to him (among other things). Broke my heart. He's such an active guy. Just over the winter holidays, the four of us would look forward to either going to the gym or jogging around a cross country track. He usually was the instigator or, at the least, a very willing participant. In a matter of weeks really, he was stripped of his mobility much like Mom's been stripped of hers. What we take for granted every day--walking--they put on their "goal" list. Imagine.

The doctor also advocated strengthening his lung capacity through playing the harmonica as it will only aid in the fight against ‘sticky lungs' and shortness of breath. So, he now has even more incentive to partake in those activities that give him joy.

But, the catch. Yes, to every story there lurks the dreaded antagonist, and his is persistent fatigue. We went on a wheelchair walk with Mom yesterday afternoon, and Craig wanted to briefly join before heading home to be hooked up to a new TPN (nutrition) bag. We slowly walked around the neighborhood as the sun sank low. After 15-20 minutes, Craig's legs were quite sore, his body extremely tired. It wasn't 30 minutes after returning to his apartment and hooking him up to the TPN that he was snuggled between the sheets in the comfort of his own bed.

You can see the frustration and fight against this incessant fatigue each time. We often ask him if he'd like to lie down. He'd shake his head and refuse even as his eyelids flutter and head bobs. Despite the fight, without fail, fatigue always has the winning serve and he eventually peters out (usually in an uncomfortable position in a chair since Mr. Stubborn had his way). 

It's a product of the many drugs he's on, the cancer, and perhaps even lingering anemia, though he had a blood transfusion one week ago. This last transfusion didn't give him the euphoric energy like it had before, and that was visibly disappointing to him. It seems the disappointment continues each time his body succumbs to the fatigue, and he noted just today that he can feel that his legs are growing weaker. Jill and I noticed this and he brought it to air that he's been having more difficulty with balance. Jill noted that he stumbled quite a bit yesterday. He's also struggling with getting out of cars. Instead of taking one leg out and then the other in one fluid motion, he swings both around, plants his feet on the ground then finds the strength to stand.

Today, after what seemed to be a good morning filled with lively harmonica playing, Craig slept most of the day waking up occasionally to vomit and then go back to bed. He vomited at a time when we were to venture out on another wheelchair walk. I stayed back with Emily to attend to him while Dad, Mom and Jill walked around then went to dinner. It was at that one to two hour window of time when Craig arose with a bit more energy. He expressed his frustration that he slept most of the day, that interactions with people are compressed into sporadic and seldom placed 5 minute intervals. He wanted to be able to wheelchair walk not only for the interaction with the family, but he's desperate to keep moving his legs to stave off further atrophy or any decompensation. I've offered to do resistance training with him where he can do light leg extensions against my arm resistance. We may try that. At least tonight, he was able to go on a walk with Emily although he felt sick upon return and later vomited.

It's a hard balance to strike. How does one protect one's vitality when pinned down by 11 or so drugs and--oh by the way--cancer. It's something like walking in quicksand and, every now and then, Craig's caught in the middle. We do all that we can to throw him a line and help pull him ashore. Still, wish there was something more we could do--not for us or any expectation of entertainment, but, as his palliative care nurse says, his "quality of life".