Since the time I began writing this on Sunday, there has been significant decline, increased amount of times asleep, and switch from oral medications to liquid/subcutaneous ones. We still have no firm timeline but things seem to be on a pretty steady decline.
Waiting is not my strong suit. I am a bit of a control freak and waiting by its very nature does not allows you to be in control. Waiting, however, has been an integral part of our live the last few months. What we first thought would be a short inpatient stay for my dad to treat the side effects of one round of chemotherapy for metastatic esophageal cancer led to a long hospital stay, and then an admittance to the palliative care/hospice unit at the John L. McClellan Veterans Memorial Hospital in Little Rock.
Any time you are dealing with a disease with a terminal diagnosis, the question of time comes up. A prognosis can be expressed in months, weeks, or sometimes even days. Doctors are often reluctant to make such predictions because even the same disease can affect different patients differently and – as we have heard repeatedly – there is no “crystal ball”. When the decision was made on January 15th to move my dad from the oncology unit to the palliative care unit we were told his life expectancy could be a matter of days. His liver function (the primary organ to which his cancer had metastasized) continued to worsen and his kidney function was declining as well due to the Acute Kidney Injury that was likely chemo induced. At that time we were told that the buildup of ammonia and other toxins would lead to coma and, eventually, death.
Days went by, and then weeks. It has been over a month since he was moved to palliative care. During the first week, there had been discussion of sending him home on hospice but varying factors took that decision out of our hands. Each day the official prognosis has been “days to week.” Well meaning people have said things such as “enjoy all the time you have left” or “some of your best memories may be made in these days and these conversations” and while some of that may be true, it is also true that waiting is so very hard for everyone involved. For my mom, who is afraid to leave for more than a quick errand because she knows things could change quickly and who also is providing updates for those who asks how things are going. For us as his children who are torn between trying to work and care for our families as much as possible and be at the hospital for him and for her. For his grandchildren who are blessedly busy with their lives but know that this major life altering event looms in the immediate future. For his family and friends who receive updates from a distance and never know if the visit they make will be the last. And of course for him, who has made peace with his God, said his goodbyes and waits for what he has been told is an imminent end to life’s journey.
It sounds odd to say now, weeks later, “well we just don’t know” when we are asked about his condition. I have sent out emails and written blog posts or facebook updates indicating that he was at a critical state of decline several times and then he seems to slightly rebound. Yet, it feels strange when people ask any given day how he is to say “he’s doing better today” because we know that he will not improve to the point of a quality of life again. And the last few days have brought changes which lead the doctors to believe that this truly is the beginning of the end of life.
So we wait….albeit often impatiently….for what comes next. I wrote in a previous blog post that we are ready for him to be set free physically and out of his hospital bed but we are in no way ready to imagine a life without him. And maybe it’s a “God thing” that he is still hanging on. My sister in law was felled by a severe case of the flu, and my brother spent the last week taking care of her, thus rendering him unable to come up to the hospital to visit, because of the possibility of his being contagious….and that prudence was well founded as he was diagnosed with the flu this past weekend. All of the grandkids have had different activities going on which, although they would have skipped with not a second thought had we been in the midst of a time of loss, they have been able to continue with. His sister had a major surgery at the end of January. This additional time has allowed friends and family to visit and let him know how much he is loved and cared for.
In her book, “At Home in this Life,” my friend Jerusalem Greer writes “we must learn how to settle into the life we have, be still, care for others, and rest in the waiting.” Thank you all for your prayers and support as we continue to rest in the waiting.
-Karri Temple Brackett
February 18, 2020