The Company We Keep
My Aunt Arlene has been fighting breast cancer for longer than a decade. It is metastatic–spread to other organs and to the bones. She has had radical surgery, radiation, and many rounds of chemotherapy. To keep her immune system working, she has needed countless transfusions of blood. She has a benign brain tumor as well.
My aunt has known of the brain tumor for many years, too. It cannot be safely removed because it is shaped like a bunch of grapes and has invaded the brain that surrounds it in a manner that makes it impossible for surgeons to safely remove it. It puts pressure on Arlene’s brain, sometimes causing bad headaches. Doctors took her off of hormone replacement therapy when they learned that the hormones made the tumor grow in size.
In December, Arlene’s husband Dan died unexpectedly. He was a difficult man, but he managed her life during his own. He made decisions. He took her to and from medical appointments. He waited patiently for her in countless waiting rooms when he was patient with, and for, no one else. He was determined that she survive and, while in his care, she did.
Arlene has two children who love her and have been caring for her since their father died. Eric flew down from his home in Virginia. Jill came in from Australia with her youngest child and stayed a month. Her husband Arnold held down the fort back home with their other children. Jill and Eric finally did what Arlene and Dan had not done since they moved last May from Las Vegas to Florida. Jill and her brother Eric “unpacked” the condo in Florida and disposed of as much stuff as they could. My aunt and uncle had downsized from a house to a condo, but had not downsized their belongings. Tough decisions had to be made. My cousins made them. Then Jill drove Arlene up to Virginia where Eric lives with his wife. They have even managed to sell the condo in the two months since their father’s death.
Eric found Arlene a home in an assisted living community near his home. The move was disorienting for Arlene, but unavoidable. Arlene cannot live on her own. She has not got the strength and, over the last decade, has lost the independent living skills to do this. Now Eric is minutes away and a frequent visitor. He has had no time to adjust to his new role in his mom’s life, but he has stepped up to meet each large and small crisis one at a time.
Arlene has a studio apartment in the community where she resides. She started waking in the night and wandering around. She once got lost and spent part of the night in a chair in someone else’s unit. That had to be a surprise for everyone in the morning!
She has fallen several times, mostly when negotiating transfers from her wheelchair. She has had two stints in the hospital in 2013. She has spent some time in a rehabilitation facility that neither she nor Eric liked much. She has had some therapy to assist with her walking, but has not improved enough to be able to move around on her own.
She was receiving chemotherapy in December; but it did not help for long. She has pain. It can be terrible. She wore pain patches to address the unrelenting pain, but they slid off of her skin and they were never strong enough to bring her peace. She once described her pain to me as being so severe that she could feel it in every bone but distinctly. In other words, she could feel pain in the tiny bone in the tip of her little finger distinct from the pain in the next bone.
Arlene changed doctors-three times in the last twelve months. Her doctor in Las Vegas changed jobs and became unavailable to her. At the same time, she lost access to an experimental drug that he had access to and that had proved successful in managing her cancer. Then she changed doctors when Dan moved them to Florida. She started treatment with a new form of chemotherapy that proved less successful. Now she has changed doctors a third time when she moved to Virginia.
Her new doctor gave her “homework” to look at the long list of treatments she has gone through since her first diagnosis. The doctor asked Arlene to write down what side-effects she had with each treatment. The doctor hoped that Arlene would see the futility of trying the one last chemotherapy treatment that she has yet to take.
When we last spoke, Arlene did not say she had decided that further treatment was futile. Instead, my aunt said she appreciated it that, when she returned to see the doctor, the doctor said it was time to stop further treatment. She did not want to make the decision to give up.
I can understand that feeling. It is better that Nature makes some decisions for us. None of us want to have charge over deciding when it should be winter. We can adapt to what we do not control. As long as we have power to change, it is tougher to give in than to fight to keep things the same.
I asked Arlene whether she knew what would happen next once she stopped chemotherapy. She said she did not. But she was a very good nurse when she was younger. I think she has an idea. And Eric tells us that she has good days and bad days when it comes to mental acuity.
Despite accepting this medical decision, I understand that she may have withdrawn her “DNR” (a written order to her medical team that she not be revived if she stops breathing). I think that she, like so many of us, understand that life can be short but wish that was not the case.
My sister, Kathy, and her husband Jeff have already driven down from Maryland to Virginia to visit Aunt Arlene during one of her times spent in the hospital. Kathy and her daughter Maureen visited again last weekend. My mom, Arlene’s only sibling, hopes to be able to visit next week. My mom is the older sister. She is worried about making this trip. She has been having medical issues of her own, some very challenging. She does not want to travel by herself. I will not be able to travel with my mom. I am about to start two new classes. I already am teaching two classes and have midterms to give and grade.
I think all of us know that the time is short, but we do not speak in terms of days, weeks, or months. We, too, are finding it easier not to acknowledge the end will draw near now that Arlene has stopped treatment.
Eric tells us that it is time for his mom to accept hospice care. I think this means that she will not only stop chemotherapy, she will stop receiving the transfusions that deliver so much energy to her depleted immune system.
My aunt has a soft voice, sort of breathy and girlish. It has always been out of place with her height and physical strength. Now that we communicate only by phone, I can easily forget how strong she has been, how strong she is. This transition from battle to repose must be tough for her. She has her faith in God to comfort her, but it has to be very difficult to be told there are no more options.
On Ash Wednesday Arlene waited in line for ashes at a mass held in her assisted living community. Someone else yelled out that she should not receive ashes or Communion because she was not a catholic. My aunt declared herself to the community. “I am a catholic,” she said. Faith can be an incredible source of strength when life and disease seem joined in a fight that will not end well. As part of the Shepherd’s flock, she counts on Him to take care of her. Still, she is a little afraid.
When Arlene fell again earlier this week the doctors tested her for injuries and learned that her brain tumor has started to grow again. It is pulling water to the region as well. All of this is putting pressure on her brain. Is this a blessing because it may vanquish thinking and ease passage from this life or is it going to cause more pain? I do not know. For me, I think that it will just add to disorientation and make it harder for Arlene to move about. I keep thinking about what the priest said earlier this year when my mom’s friend Maggie died–we go from a world in which we moved freely to a neighborhood, a street, a house, a chair, and then a bed. My aunt’s life will shrink yet again as she remains most of the day in her bed.
Two of my grandparents suffered physical declines in the weeks before their deaths. Both of them told us that they saw deceased loved ones beckon them. Both came to want to go with those loved ones. My Grandma Babe would grow restless. She used to beg me to “push her” as her time came close. I could not make her transition happen (and had trouble back then accepting that it had to happen at all). Will my aunt ever embrace her own passing? I do not know, but I suspect that she will.
In this past fifteen months I have contemplated my own death and received the Sacrament for the Sick twice. Even as I took medicine and underwent procedures to save my life, I contemplated the alternative. I signed a DNR before my surgery. I don’t think it is the same thing as what Arlene now handles.
I think I felt that I could accept my fate. Some outcomes were beyond my control. But the ones I could influence–like taking treatment–those were things I wanted to pursue to extend my life. I have not seen my aunt, but I think she still wishes she could go on living. She might want to take any treatment, no matter how many side-effects it has. However, she understands what her doctor has said. These treatments are no longer capable of buying much time. The toll they take does not buy her enough time to recover from them. The medical profession is not producing new treatments fast enough for there to be another ready for when the next one ceases to work. (Don’t be fooled by pink ribbons and finish lines, folks. The fight against breast cancer has yet to be won. This country does not spend enough money developing treatments for the metastatic forms of breast cancer!) Arlene may have cancer and a brain tumor, but she loves to read. She and Dan used to listen to radio talk shows and love the banter. Only a few months ago they used to walk around the lake in their community and track the arrival of migrating birds and then speculate as to where their “summer homes” were.
Maybe the passage from life to death is like the cycle of seasons we see here in life. Perhaps there comes a time when the life that surrounds us seems to wane. Like the birds, we see the place around us become colder. The blazing colors of life grow dimmer. Nothing holds our interest any longer. One day something happens near us. We realize that other members of the flock have become restless. We become restless, too. When the time comes, we lift off, with the others, and do what others have done for so long before us. We fly to another place. When we get there, it will be like Florida, Arizona, California, or Mexico. There will be many others like us. We will bask in the warmth of the Son. We will feel renewed. And we will wait to welcome the rest of our flock when it is their turn to find their “winter” homes.
For those of us who stay behind, the winter is gray and lonely. We will watch at our windows for signs that life returns. For us, spring will come and we will go on through the cycle of life we know on this earth. One day we, too, will feel the restlessness of the flock that surrounds us–and take flight.