Sunday, May 4, 2008

Extra Ordinary Trust

You know that if you get in the water and have nothing to hold on to,
but try to behave as you would on dry land,
you will drown.
But if, on the other hand,
you trust yourself to the water and let go,
you will float.
And this is exactly the situation of faith.
- Alan W. Watts

I love to swim and consider myself to be a pretty good swimmer in pools. In fact when I was younger I would go swimming at every opportunity and loved spending hours upon hours in the pool until my finger tips would get all shrivelled. During the summers of my childhood I remember riding my bike several miles each morning to the local pool to swim until my heart was content and in my early teens I was even a competitive synchronized swimmer for a short time. Sometimes when I am alone or mostly alone in a pool, I love to just lie on my back and float on the top of the water. It is so relaxing and peaceful. However, I live near the Atlantic Ocean and although I love to walk on the beach and appreciate its massiveness and beauty and welcome any chance to go out on it in a boat, I rarely ever actually go swimming in it because it makes me uncomfortable to be out there in this massive body of water which has so many variables that I cannot control - the waves, the current, holes or drop offs in the ocean floor, fish, sharks, jellyfish, seaweed, pollution, broken pieces of whatever on the bottom, etc. -- not to mention the fact that I am legally blind without my glasses, so that adds to my feelings of unease in this uncontrolled environment.

You cannot prevent the birds of sorrow from flying over your head, but you can prevent them from building nests in your hair. - Ancient Chinese Proverb
For the past few months, I have been living this paradox. I was happily sailing upon the ocean of my life in my nicely accommodative vessel when it capsized and forced me to find a way to survive swimming in the middle of the ocean. The ocean is dark and deep. It is not a nice, clean and pretty pool. I cannot see my legs and feet dangling beneath me. I fear the waves overtaking me, fighting against the current, the sharks, in essence all of the unknowns that make me feel helpless in controlling my own destiny and each time the seaweed gets tangled on my legs it really freaks me out until I once again remember it is only seaweed and cannot harm me. At first I began to flail my arms and legs in desperation but there was no shoreline in sight, no edge of the pool to grab onto. I could swim, but to where?? I would tire quickly treading water and surely be overcome. I have had no choice but to learn to trust the water, let go of any illusions of control and simply float. I hope that the Coast Guard comes along soon to make a heroic rescue, but in the meantime I have finally remembered my survival skills.

You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you. - Brian Tracy

I have been without words or even time for words for most of the past eight weeks. The "big picture" has finally been revealed (for those of you who have been wondering about the follow-up news to my last post) and it's not exactly pretty at first glance. I would have to equate it with more of a Jackson Pollock, abstract expressionist, type of piece. If you are used to your art being more realistic or even impressionistic, your first view of Pollock's work may leave you shaking your head in disbelief at what seems to be simply scribbles and spatters of paint without a real purpose or even a cohesive subject that abandons the traditional ideas of composition. However, if one really, truly spends time with it, just allowing one's self to be immersed in the painting, I believe there are things to appreciate and learn from what is before you.When the medical specialists had decided they were finally finished with all of their poking, prodding and probing and the whole battery of diagnostics, we braced ourselves for "the reveal." Unlike a Ty Pennington Extreme Makeover: Home Edition reveal, we knew this would not be something to which we would be really looking forward, but nonetheless could not keep at bay any longer. The ultimate diagnosis for my mom is stage IV uterine cancer that had spread to her cervix, vagina, abdominal lymph nodes and lungs. I was there when the doctor, in his best doctor voice, said some very grave words:

Leoma, I am going to be completely honest with you. The chances of curing your cancer are at best 5%. Right now you will not survive a surgery to remove the cancer because it is too wide spread and you would have to be under the anesthesia too long and would lose too much blood. Radiation will not help you because radiation is a site specific treatment and while we are treating the cancer in one location, it will only spread more aggressively in the others. I am going to try a very strong chemotherapy, but there are no guarantees that it will work. Without treatment you have at best two months to live. With treatment, if it works, you could have nine months. . . to two, three, maybe, if you are lucky, even four years. But then again, I am not God, I am only a doctor. I am treating patients today who were supposed to die from their cancer twenty-five years ago. We will try the chemotherapy and see what happens. If it works and does not seriously decrease your quality of life with the side effects, we will try some more, but if it does not work, I will not put you through further treatments and then we will talk about palliative care.

So far, it is working.

I had spent the majority of the month of March in Florida caring for my mom. I initially went down from the 6th to the 11th and then I was to pass the torch on to one of my sisters, Patti, who was to take her turn from the 12th to the 26th and then my other sister, Kathy, and her oldest daughter, Lindsey, were to come for two weeks in April, and I was going to try to come back to fill the in the gap in between since I am the closest at just over 500 miles away and also have the most flexible work schedule. However, while my sister was there, just days after my return home from my first trip, Mom collapsed, became non-responsive, and was hospitalized. The doctors in the hospital told us that she may not survive, so on Sunday, March 16, we all gathered from near and far in the wee small hours of the morning to rally and support our Mom, thinking we would be saying our good-byes. It turned out that she was very low on all of her essential nutrients because up to this point she had been eating little or nothing for weeks and she had almost two quarts of fluid built up on her lungs that needed to be drained. Then both of my sisters and I and my one sister's oldest daughter stayed for the next 10 days or so to nurse her through that physically, spiritually and emotionally critical time as she began her chemotherapy. Kathy then got special permission through the family medical leave policy at her work to stay straight through the end of April so that the rest of us could feel more at ease returning to our own work and homes.

The closest to being in control we will ever be is in that moment that we realize we're not. - Brian Kessler

Working for a hospice and offering care and service to other families and teaching others to do likewise is a completely different ballgame than having a member (or two) of one's own family looking straight into the eyes of terminal illness. When I have been in Florida with my mom, I have felt guilty about what I wasn't doing at home, being with my husband and fulfilling the obligations of my work and vice versa -- when I have been at home and work tending to my obligations here, I have felt guilty about not spending time with my mom. The events of the past several months have been the greatest refresher course on "living in the moment." I want to be able to control all of the variables, but I know I cannot really control any of them. Nothing I do or don't do can change the course of the disease. There is a growing desire to make every moment meaningful, important, significant, worthy of creating lasting "Hallmark moment" type of memories. The reality is the days and conversations are filled with everyday, commonplace, mundane, unexceptional, ordinary things. I have often said in the past several months that if I knew that taking the job working with a hospice was really going to be training for my personal life, I am not so sure I would have signed on for the gig.

During the fourth watch of the night Jesus went out to them, walking on the lake. When the disciples saw him walking on the lake, they were terrified. "It's a ghost," they said, and cried out in fear.

But Jesus immediately said to them: "Take courage! It is I. Don't be afraid."

"Lord, if it's you," Peter replied, "tell me to come to you on the water."

"Come," he said.

Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!"

Immediately Jesus reached out his hand and caught him. "You of little faith," he said, "Why did you doubt?"

And when they climbed into the boat, the wind died down. - Matthew 14:25-32


Control is never achieved when sought after directly. It is the surprising outcome of letting go. - James Arthur Ray
I have been learning to swim in the ocean of a loved one's terminal illness, coming to terms with the sharks of tumors and losses sharing the same water and riding the waves of treatments and tests followed by more treatments and more tests. As I have learned to be comfortable just floating, amazing things have happened. I still cannot see the shore, but the sunrises and sunsets are beautiful from here. My mom is almost finished with the second three week cycle of chemotherapy, tomorrow we will learn if this too has done what the doctor had hoped that it would do as did the first. She has lost all of her hair, but the other side effects that she has experienced up to this point have been minimal and only mild to moderate in intensity. We hold our breath for the results of each report, but so far, things are going well. All of my remaining family or origin, my Mom and siblings, were together for Palm Sunday. . . had it not been for this ugly threat of death, when would we have all taken the time to gather again? I am building extraordinary trust that it will all turn out for good, regardless.
He who has faith has an inward reservoir of courage, hope, confidence, calmness and assuring trust that all will come out well, even though to the world it may appear to come out most badly. - Bertie Charles Forbes

Now I know that the LORD saves his anointed; he answers him from his holy heaven
with the saving power of his right hand. Some trust in chariots and some in horses, but we trust in the name of the LORD our God. - Psalm 20:6-7