This particular post is a bit longer than usual. In the posts, I was tackling the subject of hospice. For continuity’s sake, I thought these posts needed to be shown together. While I am all in favor of a little suspense from time to time, in this instance I felt that separating the last two posts would disconnect the reader from the story.
Four posts – two days. I sat at my desk, reminiscing the events in my mind as I remembered them. Then, once I thought I had the memory clear, I would fact check the story with Denise, or one of my children.
Even today, reading those events stir strong emotions. But that is looking backwards. Stan does not like to look back.
Awe, come on. Have a heart
Once again we did the drill. Wilford Hall Medical Center for the biopsies and cat scan, the waiting anxiously at home, the response. This time in world record speed. Only a week. As we sat in the pulmonary doctor’s office…again, my mind drifts quickly from one topic to another. Is it cancer? What will I do? What will Denise do? Will I need surgery? What about chemo? Will the chocolate bar I left in the car melt while I am in here? You know, lots of things. The doctor finally comes in. Once again the results are inconclusive. I am confused, and by the look in Denise’s eyes, she shares my confused state. “What does “”inconclusive”” mean”? Is it cancer. “NO”, says the doctor. I am sure it is not. We will set you up on a schedule of a cat scans twice a year to keep an eye out on it. After the calamities of the past couple of weeks, combined with the roller coaster of anxiety we went through, I slipped….that is to say I had a couple of puffs of a cigarette. Oh that will be ok, I said to myself. Dr Kwan need never to find out. A day or two later we went to see Dr Kwan on a routine visit. As usual, we stopped by the lab for blood tests. As fate would have it, one of the tests was for nicotine. The visit went off without a hitch. I even got my pager today. I was as happy as a person could be. Holding the pager and being listed for a new heart meant there is hope for renewed life. I was listed as category 2. A person can get a category 1A, 1B or 2. I wasn’t in urgent need of the heart, so I got listed as category 2. Denise and I were hopeful for the first time in years. Now, we can dare to think of life after sixty . Now we can believe in our future together. That wonderful feeling lasted about 6 hours. We got the call From Dr Kwan, “Brian, you smoked. I am inactivating your listing”.
‘and you’re out!
Ever get that sinking feeling in your gut? And then drink a cup of acid? And then get repeatedly punched in the stomach by a heavy weight boxer? And then eat some poisoned food? Well, I felt worse than that in the moments following the phone call from Dr Kwan. I thought to myself, it was over . I blew it. Mind you now, I am not off the transplant list,. I am just on hold until I can get my smoking under control. A small reprieve. A few days later I received a letter from the transplant hospital. It said I was too sick to get a heart transplant and that they were removing me from the list. What did they mean? How can you be too sick to get a heart transplant? I called Dr Kwan. Apparently, they get all the biopsy results, cat scans and every thing else that happens to me. They weren’t happy with the results of the biopsies. “Inconclusive” two times….No, they think that it is lung cancer, or at least pre-lung cancer. So, no transplant. I was devastated. Completely devastated. Did I ever tell you that part of getting a transplant was seeing a shrink? I had to visit with this guy regularly. Denise reminded me of this today as we were discussing the blog. After I was removed from the list, I visited the shrink one last time. He told me to go ahead and start smoking again. It didn’t matter. I was going to die anyway. So that was it. No more chances. No more life boats. I needed to begin the process of dying. There was no longer anything anybody could do. I was dying, and according to my doctors it would be sooner, rather than later. Denise called the children (adult children). I guess it’s time for them to know their father was dying.
Hospice, sweet hospice
The kids came over that evening. We all sat at the dining room table. That “deer caught in the headlight look” was in their faces. What does a person say at a time like this? “It’ll be ok”.?? No. Even now, over 2 years later I can’t figure out the right thing to say. We hugged. We cried. I hoped they had grown into the type of adults that would help their mother handle the coming weeks. A few days later I found myself in the emergency room..Again. The folks there had gotten to know me quite well. The doctor comes by and tells us there really is very little he can do to help. He would provide medicine to control the pain, and bring me into the hospital overnight to stabilize me. The next morning I woke in the hospital bed. I had accepted completely the idea of dying. I will no longer fight to stay alive. The doctors came in. Denise and I had discussed hospice. The American Cancer Society defines hospice like this:
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered care — it involves the patient and the family in making decisions. Care is provided for the patient and family 24 hours a day, 7 days a week. Hospice care can be given in the patient’s home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States is given in the home, with a family member or members serving as the main hands-on caregiver.
The doctors agreed. Home hospice would be the way to go.
September, 2007. I am 53 years old. I have been married for 33 years and have a 32-year-old son. He has a wife and three perfectly wonderful boys. I have a 31-year-old daughter who is married to a lovely girl. They too have three great boys. Is this the sum total of my life? At 53 years old, is my life really over? These thoughts I remember clearly filling my mind. I think about them as I watch my son and others dismantle my bed, and move it out of the bedroom. I think about those things as the movers bring in the hospital bed, and set up an inflatable bed for my wife to sleep on. Wheew! This is it. The hospice doctor and nurse team were in the house. They were explaining to my wife how the program works. With home hospice, there is no 24 hour care. Just your family. Your family feeds you, cleans you, medicate you and keeps you company, all the while watching their loved one die. Home hospice sounds better than it is. Home hospice is not fair to the family charged with providing the care. Oh sure, help is a phone call away. It isn’t fair to them. It isn’t fair to my family. It’s TOO hard. I got settled in to my new surroundings. The pills that the hospice doctor left would make an L.A. drug dealer jealous. Xanax, of course. Percocet and Oxycontin too. And for those crabby days, morphine, in both pill and dropper form. I was set. I was given some medication and drifted off to sleep. Yes. I am 53 years old, and it is, as they say…over.
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