Live or Die? April 9, 2009

Craig did not die in late March as he thought he would. On March 31, when he was fed up with everyone “fussing” about his potential passing, he declared he wasn’t going to die that week after all. The angels that had begun visiting him in his bedroom at night disappeared and haven’t returned since that day. He’s feeling better now that the steroid level is back up, so he looks good, has good appetite and energy levels, and is back walking some. However, he has been in an intense, frustrated, baffled struggle trying to figure out whether he is supposed to live or die. And if he is continuing to live, what does that look like and what is he supposed to be doing, anyway!

Over the weekend, the Reiki practitioners had him back thinking about living, and he began talking about the possibility of having a “spontaneous remission” (although he has a very difficult time remembering and saying the words!) On Monday, in response to his frustration, I asked Craig if it would be helpful to do a pro/con list for living and a second one for dying, which we did! His conclusion was that either choice would be potentially good… But, it did seem to free him up from the confusion in his head about it all. We maintain a calendar on a marker board in our living room. Every Monday is “SC” for study circle. Every Tuesday is “SG” for support group. Now, Craig has designated Wednesdays as “SR”—spontaneous remission focus days. A visitor then said Thursdays should be “SJ” – days for spontaneous joy!

Over the weekend, Craig had seemingly lost the ability to sing the short Baha’i healing prayer that he has sung regularly for 15 years. I didn’t realize how painful this was for Craig though until Ginny, the music therapist from hospice, joined us on Monday and he broke down crying in telling her about the inability to sing. She was able to cause a breakthrough and get him back able to remember the tune. He has been able since then to still sing it, sometimes with me singing along with him. So, he’s very happy.

Monday was also an emotional day as my daughter, Jennifer, began having contractions, with her baby not due until July 15th. The doctors got labor stopped, and after a night in the hospital, we are grateful to report she is back home and on bed rest for a few days. One silver lining - it was a thrill on Monday night to hear the baby’s heartbeat over the phone, as a fetal monitor was attached. One of the tests in our circumstances right now is that it’s virtually impossible for me to leave Craig to see Jen, as she and her husband Frank live near Fort Lauderdale, Florida, a 3-hour plane ride away, and she is also on travel restriction.

Our oncologist Dr. CJ Nock and his nurse Sandy Dye stopped by for a “home visit” on Tuesday. They had expected Craig to be on his deathbed by now and were amazed that he was up and wheeling himself around the house in his wheelchair and looking great. They continue to be special members of our team. Craig thinks CJ and I should write a book about some of our experiences. Time will tell… Kim, our hospice nurse, also checked Craig out yesterday, and all vital signs are normal.

So, I’m back grocery shopping and we are enjoying each and every day. We have been giving away Craig’s memorial music CD to visitors and simply asking people to enjoy the music/Craig’s singing and ignore the message on the back cover that says his soul has passed on! We are doing our best to trust that Craig is in God’s hands and that there is a larger plan at work for Craig that will manifest as we go through the next period of time. Is the tumor growing and spreading? Is it shrinking? Will Craig live for awhile longer? Will he die soon? Literally, God only knows…

Love, Susanne (and Craig)