Crap. It's been a couple of crappity crap crap days. Day 227. (I don't keep track, I just counted.) And it's only 3 days away from being exactly one year since relapse. AND here we are, back in the hospital. Like I said, crap. Saturday afternoon Claire called me (I was on a one day work related excursion to Montana with my hubbie) and told me that her right side felt achy. It continued to hurt, but only when she was lying down. Then we felt and heard some rattling in her lower right lung. On the 4th I asked her if she wanted me to call the doctor that day or the next, knowing that if we called them they would most likely want her to come in. She opted to go to the 4th of July festivities and call on Tuesday. My favorite quote of the week from Claire? "If they have to do a surgery I hope its just a little one because I have plans this weekend." These are the words of someone who has had a few too many surgeries. Sure enough, they had her come in (but not until Wednesday). That was the crappiest day of all. She started out not having slept well, smashing her finger in a drawer, then getting two cavities filled. Then we went to the hospital where she had an x-Ray and a blood draw. The x-Ray was inconclusive (why do they even start with that? Go right to the big equipment!) so they ordered a CT scan, which included an IV (nope, they didn't just leave the blood draw needle in) in order to inject contrast. Then back to clinic where we were told that she had a large amount of fluid around (not in) her right lung. Dr. H said that it needed to be drained, but since they couldn't do it that day, and since she wasn't in distress, we might as well go home, shower, pack a bag, and come back the next day. In discussing possible causes he said that cancer was way down at the bottom of the list, since last week's tests showed that Claire's marrow was still 100% donor and there was no detectable bcr-abl, to which I replied, "Hang on. Say that again?" I think maybe they could have led out with that information, right? It would have made the day just a little less crappy.
    So, today. We got in at 11:00, but they didn't actually take Claire in until about 1:30. Of course she hadn't eaten because she was being sedated. The procedure was short, and they drained over a liter (!) of fluid from around her right lung. It is still draining, so we are up to about 1.5 liters. There wasn't any blood in the fluid, and initial tests didn't show any signs of infection. One possible cause is the million dollar med she is on (Dasatinib) so they are switching her back to Gleevec (imatinib, and still very pricey) to see if she will tolerate it now. Dr. H told her to expect to be here at least through the weekend, maybe longer. Of course she had planned a party for a friend who is leaving soon on an LDS mission, and he is giving his farewell talk in church this Sunday. Stupid cancer likes to ruin the best laid plans.
    It's strange being back inpatient. Part of me almost feels like one might feel going back to visit an old neighborhood. I know this place and these people, and there is a level of comfort here. It helps that I don't feel a sense of panic over what we are doing. But we do feel anxious as our dear friend is having a very difficult time during her hospital stay right now, and our thoughts and prayers are with her. I ran into another friend who was bringing her son in for a transfusion. They are faced with unimaginable choices right now, and our thoughts and prayers are with them. One of our nurses today is a BMT survivor (not too much older than Claire),  and we are grateful for her life and story. And there are so many more stories. Even in the midst of trial and sorrow, we are surrounded by inspiration.
"The most beautiful people we have know are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen" -Elizabeth Kubler-Ross

          Claire waiting patiently for her procedure.

         In the dreaded CT scan machine, painted to look like a pirate ship. it is a children's hospital,      after all.

     Then into this Utah Jazz room to place the chest tube.

    So, Claire, how do you feel about being inpatient?

      She is draining, and this little pump goes with her everywhere.

     Independence Day festivities.