Friday, May 16, 2008
CANCER JOURNAL - CROSSING THE LINE
I firmly believe that there is a line in the process of dying of cancer that a patient crosses--the line between living with cancer and dying of it.
Mind-care professionals like to talk about attitude--as though if you just develop the correct attitude you will be able to survive cancer perhaps indefinitely. The message always comes from some upbeat personality who is enthused about the accomplishments of modern medicine and psychology. It almost never comes from someone who is living with cancer.
Yes, mental attitude plays a part. I'm not denying that. But there are two other factors that loom largely as well. Attitude is not always the result of decision. Sometimes it is the result of circumstances forced on the patient by the disease, coupled with the body's message about life and death, delivered in ways that are not measurable.
In living with cancer, a point comes when the body and the circumstances send the message that life is terminating. My mother often talked about this when she talked about my father who died of cancer. She would tell me that he knew he was dying and so he did this or that particular thing to get ready. Clean out the chicken coop is the effort I remember her mentioning most often.
Now that I'm faced with the same reality, I too am doing things to get ready. Cancer has changed the way I view so much of life. I smelled a lilac bloom yesterday while out for a walk and tried to memorize the scent, believing as I did that I won't do that again for all of eternity. I recently wrapped up a present of books for an upcoming baby shower. Sign the books or don't sign the books? If I sign them, the mother may cry when she reads them to her child, since we are close; and then the child would associate reading with sadness. Not a legacy I want to leave under any circumstances. I didn't sign the books.
I've gone through the family pictures, putting them in order, and making sure they are labeled so that the people can be identified. It was a trip down memory lane recalling many happy times as indicated by our smiles. I needed that. Those pictures showed me that I have had a full life. As I reflect on my life, mostly what memories come are memories of difficulties and hard times. I seem to be stuck in a self-pity trip that demands attention so often. I think this is one of the phases of accommodating the mind to death--one that I hope will pass sooner rather than later.
Lately I've been pondering whether to propose to my husband that we buy our gravesites and make my funeral arrangements. I don't know if he can handle it, though. I've decided that my number one priority is to die with my hair on. It's a way of taking back some sort of control in the face of the absolute loss of any control at all.
When I was out walking yesterday, I caught up with a group of junior high students walking home from school who were walking slower than I was. Passing them would have been awkward. I considered crossing the street, but there was no sidewalk on the other side, so I just stayed behind them. It bugged them, I could tell, because they kept glancing back at me. Finally they crossed and walked in the road. "Yeah," a little voice inside me said, "You did this your way instead of their way."
I have mostly done things other people's way: altered the menu on any given day to accommodate likes and dislikes of husband and child, made sure the sheets were dry and back on the bed before the family returned home, waited patiently in line until my turn came, tried to make the nurse with the needles less anxious about hurting me. I still do that sometimes, but no longer every time. Sometimes now, I size up the situation, determine what I'm willing to do, and do it. It doesn't always accommodate other opinions. The other day I made my husband's sandwich with frozen bread. I told him what I had done, and if he didn't like it, he should just wait until it thawed to eat it. I could tell he was annoyed. He hates sandwiches made with frozen bread. Ordinarily I would have microwaved it, but not this time. God bless him, he didn't say a word.
This attitude has developed just recently out of the bad experience in the hospital. I walked out of that hospital a different person, and not necessarily a better person than I used to be--a person who thinks it's time to do things my way more of the time. The attitude change has been as much a surprise to me as it is to my family. During a conversation with my doctor yesterday I told him that I recognized that I had become a bad patient. We talked about what would be the easiest way to die--keep treating the cancer, with all of the discouragement that entails--or let God make the final decision. We talked about what would happen if I stopped taking this drug or that drug, and whether the dying process would be quick and relatively painless or long and agonizing.
I have to weigh into this consideration what my decisions would do to the rest of my family. Could they cope with my going on palliative care--a decision that looks very tempting much of the time, but one which offers no second chance. Would they be better off if I kept on trying to stay alive in spite of a downward spiral of medical mandates. What good am I to anyone when my life is filled with medical activities so that I have nothing else to offer them? This is especially true for my husband who must continue to work despite his own medical problems, so that I will have health insurance. The cost of treating cancer is astronomical.
I no longer have a day that is not filled with some sort of medical mandate. That is part of crossing the line. As treatment progresses, more and more problems develop that require more and more medical intervention. Eventually this will culminate in the medical profession saying there is nothing more they can do. I am not there yet. They still have optimistic messages to give me. But my doctors and I all know that there really is no long-term hope.
Meanwhile I try to keep all of the medication straight, forget to take it sometimes, and have it sitting around the house in places where I will be when I need to take it, as a constant reminder that I don't have long to live. One night this week I had to get up three times to take yet another medication I had forgotten. My brain is in revolt. I am on a leash to my doctor's office because the Coumadin must be extra-closely monitored when I'm in chemotherapy. And as doctor and hospital schedules go, it often requires waiting. I sit in the office waiting for my appointment watching the clock tick away what little time is left and wishing I could be doing something meaningful.
I know full well that life is a death sentence. I know that there is nothing anyone can do or say that will lengthen my life one moment beyond what God has ordained. I even tried to make it easier for my doctor by acknowledging that he has no answers. He is a good doctor. He didn't avert his gaze even once during this conversation. He is made of pretty strong stuff. I admire him. The last thing he told me is that he will pray for me, so we share a bond of faith and belief that God knows what He is doing. I am grateful for a doctor who knows that.
How to end this dreary diatribe? What are you readers going to think of it? You can't know why it helps to write it if you are not facing these limits yourself. It probably looks like a plea for sympathy. Who knows maybe it is. I like to think of it as therapy. I've always turned to writing when life gets difficult. Mostly I think blogging this is a way of leaving something behind, of saying I WAS here, and for some reason or other I mattered, if not to the world, at least to God. In any case, if it bothers you, if it makes you angry, or if it makes you disgusted, please do me the favor of not telling me that. Just leave it where you found it and pray that you will never have to think these thoughts when your turn comes.