Catch 22

It's Friday but I wish it was Monday; I might be able to use alliteration, "marathon Monday", or a throwback reference to the 80's, "Manic Monday", if so. There aren't many songs about Friday, as it turns out, but it seems to be THE busiest, most chaotic day of the week for the Lawlers. Today marks day number7 - a full week - for Craig's guess pass at the hospital. Neat as it is, we were all hoping he could go home today. Sure enough, he was discharged, but not before running the gauntlet and/or dangling from a trapeze as some 'roided out football player pulled on his legs. (We watched American Gladiators when we were young. We know what's up.).

Sans quirky eye movements ala the Bangles, today was in fact a manic marathon of meetings (yeahhh, alliteration!). These last few days have been intense. Craig's swelling has increased significantly in his extremities, abdomen, around his lungs, even parts of the body where no man would want swelling --- well maybe some men. I buzzed his back yesterday and felt the large boulders protruding from his back. Whether it's his tumors, fluid, or a combination of both, it took my breath away. Ahhh, why is this happening to HIM of all people! He had a clean bill of health, a "zero" percent chance of it recurring and here we are staring at his dying process -- one that has accelerated to the pace of "days" rather than "weeks". The fluid is collecting in rapid fashion; naturally the dietician and all other clinicians including Dr. F suggested that the TPN be discontinued since it's only adding to the fluid retention, causing more discomfort than benefit. Psychologically, we all understand that food and water are our sustenance. Without both, we'd die. For Craig, it's a damned Catch 22. The TPN is no doubt harming him, and very well might add to his demise. So will not "eating". It may not really matter in the end; psychologically, it matters a great deal for Craig.

We're no strangers to this predicament, however. When our Mom was in the hospital for her last week with us, we participated in a round robin series of debates: should we stay or should we go now. Hospice was the hot topic, and for many this would be the natural transition. It's a wonderful resource for those nearing the end of their life. Unfortunately, after having the hospice "utopia" presented and, yes, the underlying guilt trip of 'why isn't she there already', we discovered -- oh hey this just in -- she doesn't qualify for the in-patient hospice, which she would need. Instead, what she DID qualify for was the same set up we had provided through our care at home with a weekly nurse visit. With the new set-up, we'd just call it hospice instead of Lawler magic. The funny part was, she was in the hospital because we could no longer give her the medical care she needed under our supervision. She needed more, but hospice in-patient only accepted folks with horrible, horrible pain and horrible, horrible vomiting - both of which she did not have. She had no horrible, horrible symptoms to manage other than the quite horrible and very devastating reality that she could no longer use her body in any purposeful manner - a pain not qualified by how many morphine hits one receives. You can imagine my annoyance (expressed annoyance at the time) with that scenario. Why talk something up like a panacea to all the family problems when she didn't qualify in the first place? We actually did right by her by taking her to the hospital where she could receive round the clock care and comfort. (And where we could have a break from wear and tear). Isn't that the philosophy of hospice after all? To provide comfort care to those who are dying, as well as their families? The matter became mute since only a day or two later, Mom's condition deteriorated to a point where she could not be safely transported. One would ask the question well wouldn't she have then qualified for hospice if she was indeed so very close to death? Perhaps our nation's health services should expand their purview just a tad to those who are dying without horrific pain/nausea, but need the care and comfort nonetheless. In the end, it was just how she had wanted it, surrounded by her family and by University of Colorado's extraordinary palliative care and nursing staff, whether she had hospice or not.

Enter Catch 22, part 2. I've mentioned that Craig is enduring significant swelling not unlike our mom. Albumen is a blood protein that helps trap fluid in cells. For both, their albumen levels were too low to retain fluid. When that occurs, the fluid naturally leaches out into a "third space," pooling in places that are harmful to the body. For Craig, this translates into pressure on his lungs, stiffness in his legs, and distension of his belly. The recommendation is to taper, if not completely stop, the TPN. It makes sense; the TPN is no longer functioning as a true nutrition source, though it may provide calories for the body to use. All other traditional ideals of nutrition have been nulled by the ever hungry and selfish cancer that has taken hold. Yet, human beings hold onto the notion that without any food of any kind, we'd starve. We'd wither away, "waste away" to quote Craig. Yes, there is a physical stress that Craig is enduring from the cancer and from the TPN. It may -- and very likely will -- aid in his death and perhaps discomfort. But, equally persuasive is the psychological duress discontinuing food/water brings to a savvy, intellectual person like Craig. He's no idiot. He knows what will happen to normal, healthy folks if they were to stop eating and drinking. What might not register as loudly to him is that he is in his dying process and those provisions are not as useful as they once were to him. Still, it's a security blanket to cling to and I don't think I would feel any less scared and dependent if put in that situation. It's scary as shit. On the one hand, the fluid retention could 'flood' him in a sense, causing more discomfort and pressure on his lungs. On the other hand, the lack of an energy source will surely yield the outcome we know waits on some unknown horizon. It's there. It's coming, and probably sooner than we'd hope. But, to not eat may seem like that's an absolute Craig isn't quite prepared for.

But, guess what. Hospice doesn't allow TPN. For Craig to receive the remarkable services hospice offers, and it is remarkable all sarcasm aside, he would have to be willing and comfortable with discontinuing TPN and saline hydration. He would also have to change many of his anti-nauseas. These are CLEARLY comfort measures when you talk with Craig. Obviously, they won't save his life; they won't change the course of his cancer. But they damn tootin keep him from vomiting like in the exorcist, among other comfort care measures. The problem is that they are too expensive and hospice is a free'ish (through insurance), government subsidized program so they have to make restrictions. If Craig could eat on his own without vomiting, hey more power to him. But, Craig has more pain and nausea to hand out at a homecoming parade. It just so happens that one potent and very powerful tool for him, IV Zofran (pills are covered), also isn't covered due to its price tag. His cancer prevents him from eating by mouth. Hospice doesn't support TPN. What to do, Catch 22?

Fortunately, hospice is also forgiving and flexible and allows folks to enter and exit as they please. Craig entered the hospice care program for this weekend's trip into the mountains, since hospice was presented to him as one of the only viable support systems for a man in his position. While extremely hesitant, he agreed to do hospice, and agreed to discontinue TPN for a couple of days to see if the fluid retention would subside, but always with the idea of resuming his nutrition source in a couple of days. We learned that Vail does not have a local hospice outlet so we are in fact back to square one with the exception of being able to call hospice before going to a hospital or helping Craig ourselves, as opposed to calling palliative care. (Not a large difference). The only real difference (for this weekend at least) is the restriction of TPN and other medications. Craig articulated today that he's very scared to lose TPN (his nutrition) and to waste away. The sisters, our dad and Emily all understand the point of discontinuing TPN but if Craig isn't there yet, then, dammit that's where we are too. His comfort -- physical, emotional, and psychological -- is our top priority. If it means he's willing to take on the fluid and what it might do to his body so that he's psychologically comforted, then so be it. Our job now is to ensure that Craig knows the risks and benefits of either option. But, really, our first and only job is that his days are comfortable, filled with love and enjoyment, and not spent mulling over heavy, heavy decisions that may not affect the outcome in the end. We'll take his comfort cue from him.

The largest Catch 22 exists not with hospice and their TPN restrictions but with the knowledge that TPN and not having TPN are equally harmful to Craig, and there's nothing we can do. Both scenarios may have a different profile in terms of comfort, but neither will change the course that has begun and that is truly the biggest heartbreak of all.

In the end, there will be no battle lost. Mom went when she needed to, as she needed to. Craig will to. They both had courageous journeys against an unpredictable and merciless cancer. Every stroke, every move, every day lived was lived just as it should. We will have lost life, but Mom and Craig will have given it valiantly --TPN or otherwise.

~E