Storyline

I'm sitting next to a sleeping Craig. The lights are dim and the only sound is that of the wind current from his 69 degree air conditioner, the bed mattress redistributing air, and the occasional whimper from either a colorful dream or his ever loyal companion, pain. Still, he's clutching the sheets much like Mom would when she slept, and I can't help but smile.

The days since Craig's admittance to the 11^th floor have been hectic and amorphous. Days seem to blur into one another without much definition.

He was admitted Sunday evening and just as soon as he sat on the bed, he vomited. His color has reached a new tone of yellow/green; his cheeks appear a bit more hollow; his legs and arms have grown thinner and bones are much more apparent. Yet, his belly distends in all directions including his lower back. To anyone else, I'm sure Craig appears ghastly ill. I find it still takes a bit of suspended disbelief to really accept the storyline. I see Craig; I see his symptoms and how sick he is; I know the probable outcome and the odds of anything really deterring the train from its tracks. Yet, it's difficult to see and accept that Craig is wandering down a path similar to Mom's only three weeks after her passing. It seems cruel and unholy how Craig has to face his own mortality so close to Mom's death when images are still fresh and process "milestones" are keenly remembered. Still, here we are...

Tuesday, the team of oncology residents, attending physician, palliative care team, internal medicine resident for oncology, charge nurse, and Craig's nurse joined us around Craig's patient bed for a family meeting. In all, I think there were 9 folks staring at Craig, wanting to help him in any way they could. I started things off with asking for the results of the various CT scans and ultrasounds that were taken Monday. As we expected, the images showed that his tumor bulk had increased - Craig's cancer was on the move again. This may have come as some surprise to Craig. Thus far, he was under the assumption that his cancer was contained and, if anything, on the run. To learn that the cancer was in fact growing was disappointing, to put it kindly. The doctor went on to say that there's fluid in or around his lungs; swollen lymph nodes indicating disease in his lymph system; lesions surrounding his liver (it's unclear whether there is disease within the liver); and general growth throughout. Essentially, it is more of the same on a larger scale. The cancer is disturbing some of the body's natural ways of storing and removing fluid and so there is some pooling of fluid in his lower back and abdomen, which might be adding to his distension. This is also likely responsible for his shortness of breath. I helped him sit upright and could hear him wheezing with exertion. The harmonica blowing, avid swimmer was out of breath from sitting up. It broke my heart. Yet, we learned today that the fluid in his belly is not significant enough to warrant a tap to drain any excess, leaving the likely culprit for his belly distension to be a combination of increased tumor bulk, fluid, and gas.

Craig's liver continues to function at a subpar rate indicating some level of irritation. His chemo agent was halved to relieve some of the burden on the liver, and we held our collective breath knowing just what his cancer is capable of when left (even moderately) unrestricted. Whether the cancer began moving again even before halving his dose or whether that was the leg up it needed to take off, we will never know. What we do know is that his liver could not keep up and the chemo needed to be lowered. It was the proverbial Catch 22 we are now accustomed to seeing. It brings back painful memories/realizations of when our Mom had hemorrhaging in the brain and a probable pulmonary embolism. The doctors could not treat one without exacerbating the other; anticoagulants generally used to treat blood clots in the lungs would increase the bleeding in the brain. There is a similar dilemma with Craig; maintaining a high dose of his chemo agent would continue to compromise his liver, and his cancer may no longer be responding to his chemo in the first place.

The notion that the chemo was no longer working was, in fact, the conclusion of the oncology and palliative care team. They suggested that Craig take a break, perhaps two weeks, to let his liver rebound from the insult - IF it will rebound. The liver deficiency could be related to the disease. After two weeks, they suggest placing him on the 3^rd string quarterback "chemo-like" agent, Sutent. This has been used almost exclusively, and quite effectively, in treating Clear Cell Renal Cell Carcinoma. The Torisel and Nexavar, which Craig has used and has blown through, had some influence on his Chromophobe type of cancer. There aren't many treatments for Chromophobe and Craig has unfortunately tried the two heavy hitters without much success. There is a chance Sutent could help, however. As the attending doctor noted, some people who have had success on Sutent may live an additional couple of months. Bottom line, there are no false perceptions of what Sutent could do. There is a chance his cancer would respond in a way that might slow the growth or, with any luck, stop growth. The hope is that it will quell some of the symptoms for Craig to enjoy life for however long he will live. It is difficult to establish a true understanding of what we are looking at but, from the discussions, it would appear that we are talking a few short months, perhaps even weeks depending on how he responds in the off period of treatment and then while back on treatment.

We know what his cancer can do and two weeks is a long time. I would not be surprised if the recommendation from his oncologist (who is on vacation this week) is to postpone treatment and focus on symptom management to enable Craig to do the things he loves while he can. We'll know more when he returns later this weekend.

We also learned over these few days that Craig is borderline anemic again. Evidently, as cancer overwhelms the body, the body is less able to make new blood, necessitating more frequent blood transfusions. He received another transfusion last night. However, he had a violent reaction and began shaking after only 3/4s of one bag being infused, and they had to discontinue the process. Reactions of this nature become more common as one receives more transfusions, so they will pre-medicate him in the future prior to transfusion as a preventive measure.

The palliative care team is speaking with Craig to help understand his symptoms in order to give him better relief, as well as help walk him through the emotional/psychological journey he is now on (and has been on since late February). He's in nearly constant pain, has a difficult time finding a comfortable position, and often groans, whimpers and winces throughout the day. At night and sometimes during the day, he breaks into hot flashes and sweats profusely. The cause of the sweats is still a mystery to the palliative care team, and to all of us. His blood pressure typically spikes during each episode, yet, lately, it's remaining elevated despite the flashes and consistent blood pressure regulating medications. He is also vomiting (nothing new) but this adds to the discomfort. The team has increased his pain medications, including his fentanyl patch and prescribing oxycodone as needed, which is becoming more frequent. The number one goal in this two week interim and beyond is symptom management; I hope that medicine can catch up to him in that regard because it's gut wrenching to witness and be absolutely helpless over.

As Craig has been presented with the news, we've asked him how he's doing and what he is feeling/thinking. He's clearly shocked. I asked him if the news fell in line with his expectations or understanding with what was happening and how he felt. He said he did feel different this weekend, and that difference was worse than before. But, still, he did not expect to hear this news and did not necessarily know he is at the point that he is. Over choked tears, he mentioned to the palliative care team that he felt a change and that he had turned a corner and was concerned that he was traveling down the road our mom was on - a road marked by hospital visits and sheer immobility as she was nearing her death. We all shared his tears and pain, though I'm sure his hits a far deeper level. He is exceptionally brave and courageous to have brought up the comparison and fear - something we've worried about even before Mom's passing. We wondered what he internalized during the end of her cancer process, if that was a mirror to his own, if he wondered what would happen to him. Now, given the proximity, we wonder if he panics when symptoms appear like being short of breath, and try to reassure him that it is not like Mom and that he's not at that point yet.

At times, it's just too much to take. I remember walking into the room one night. I'm not sure if it was the lighting, the green tinge of his patient gown, his true color, or a combination of all three but he had the eerie coloring similar to Mom's. The image and memory froze my gait, and I just stood and stared wondering how this could be happening. He's not where Mom was but, in time, we'll be making decisions on Craig's behalf, advocating for his best interests when he can't, and buzzing his hair as he passes. It is screwed up on so many levels, but I'm glad he has his girlfriend, Emily, and his friends there for him willing to walk through fire it did any good. And, he has his devoted sisters, who will always be by his side as we have in the past - that impenetrable pod of four. Dad will join, too. Like with Mom, at least he doesn't have to worry whether he'll be alone. ~E