Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Cancer testing, the tale continues


Peggy had a migraine and was exhausted when we left the urologist's office (see photo), so when we got home, I rubbed her back until she went to sleep, but as I was tiptoeing from the room, I broke a piece of pottery and had to rub her back a second time. She couldn’t return to sleep, so we talked about her fears of me having cancer—if I have cancer—and possibly dying. I like it when Peggy shares her fears, but she worries that they will scare me, although I don’t remember a time when this was soI can anticipate problems as well as she can. I tend to focus on percentages, so the better they are, the less scared I am. Peggy is so afraid of cancer that this doesn’t work for her. Some other disease might be easier.

I’ve had two previous cancer scares, but Peggy is more afraid this time, maybe because it’s the first time that I too thought I might have cancer. In fact, I wouldn’t have had my last two biopsies if she hadn’t insisted. They were both big deal biopsies that just scared the shit out of me—especially the one where the neurologist cut through the front of my throat to get a piece of bone from the back of my neck. Those two times, I just knew I didn’t have cancer. Feelings don’t constitute proof, so I recognized that I still might have it, but my natural confidence was such that I couldn’t get beyond seeing cancer as a remote possibility not worth the risk of a biopsy.

The more I learn about doctors and hospitals and the bad things they can do to a person, the more I try to make sure their proposals are necessary. Of course, when a book, the Internet, or a government panel’s report (like the one this week), tells you that a PSA-based biopsy (a PSA is a blood test) puts you at greater risk of harm than of good, and your doctor (along with two different urological organizations) tells you the opposite, whom do you believe? I should think the government panel would at least be objective in interpreting the data, whereas the urologists have a financial incentive to be biased--note that I said "biased," not dishonest. It’s also true that a person just naturally tends to believe in what he does all day. For example, Peggy is a nurse, and if the government had also announced that some standard nursing procedure did more harm than good, I’ve no doubt but what the nurses would be as enraged as the urologists. It’s hard to admit to yourself that you’ve been hurting people for years while trying to help them. Yet, none of this necessarily means that the government is right and the urologists wrong, nor does it take away my own doctor's power to influence my decision making. If I trust a doctor, I will generally do what he saysI just might not do it right away.

I’ve grown accustomed to orthopedists and neurologists, but this was my first urologist. Peggy went with me to the doctor as she always does (I do the same for her). She usually sits in the corner and says little, but today she sat between the doctor and me and read from a list of questions she had prepared and had me type. My first observation was that the waiting room was filled with old men, some with their wives, and I felt like I had walked into my next new club—Old Fuckers Who Dribble. I had known for some time that age would bring increased pain (even children know that it brings increased disability), but I hadn’t considered the indignities of aging. Old people have the kind of problems that gross out young people who are themselves certain that they will never have them. I reflect upon the fact that these indignities come to everyone if they live long enough, and this enables me to better accept them. Then too, death seems so near at times that nothing much matters to me anymore other than the fact that I have to fight to stay alive because I don’t want to leave Peggy alone.

I was prepared to mistrust Doug because statistics go against me trusting any new doctor (which is why I cling to the ones I do trust). He also works in a clinic with lots of other urologists, and I expect large clinics to be impersonal, rigid, and take a one-size-fits-all approach. As it turned out, I’ve never had a better first impression of a doctor. Changing doctors is a pain in the butt, so this meant a lot to me. He said that my odds of having cancer are 25-35% and suggested that I either go ahead and have a biopsy or, if I’m on the fence about the biopsy (prostate biopsies are another big deal kind of biopsy), that I have a blood test called a “free PSA” and base my decision upon the results. I jumped at the PSA. I don’t need government reports to tell me that I live in a test-happy/surgery-happy society in which I don’t dare subject myself to risk without doing what I can to avoid it or at least mitigate it.

Peggy and I have long agreed that it would be better for me to have cancer than for her to have it because she's so terribly afraid of it. She also fears death more than I. Yet as I see it, the one who dies has things relatively easy because the survivor will have suffered with him or her until the end at which time the survivor will embark upon an an even worse period of suffering while alone. I’ve always had doubts that I would survive without Peggy, but I always thought she would pull it together without me. To my surprise, things right now are so hard for her that I’m unable to console her. Yet, I’ve seen her handle loss before, and she always pulled herself together, so I think it likely that she will get her sea legs under her this time too.

It’s interesting how unpredictable Peggy is to me even after 41 years. Of course, none of us really know how strong we will be until we’ve been tested, and that’s mostly hindsight. Each new bad situation is never quite what I expected. There’s always fear, pain, anger, despair, and so forth, but it’s never the same fear, pain, anger, and despair because no two situations are ever the same. I’m not the same either, but at least I’m tougher than I used to be. Now, I just try to sit quietly and watch it all go by. 33,000 Americans die of prostate cancer each year, and another one is diagnosed every two minutes. I think of each of those men as being all alone in his own movie theater, just as I am all alone in mine. It’s the human condition. We can never feel another person’s life from the inside, so we are forever separate.

I’ve already gone through so much that a little more isn’t likely to hurt me unless there’s some unfortunate medical outcome. With every new ailment, there are new and interesting things to learn, and the tests and surgeries are often quite interesting too once you get past the fact that you might bleed a lot, will probably be in pain, will be exposed to noxious substances, and might very well die. I have grown increasingly able to make the best decision I can and to let it go at that, although I’ve lost faith that everything will go right because it's usually the case that so many things can go wrong, that there’s a pretty good chance that one or more of them will go wrong.

I panicked when I realized what a crapshoot modern medicine is even when everyone performs at their peak, but I’ve gradually grown fatalistic. The worst part is when I’m having trouble deciding what to do. For now, I know. If the free PSA test comes back bad, I’ll have the biopsy. That’s as far as it makes sense to plan right now. Yet, it’s emotionally hard to stop studying, and the subject is interesting if wearisome. 

Maybe cancer; maybe not


My prostate antigen level in April of 2011 was two. This April, it was 4.5. This week, it’s 4.9. I’ve had a few biopsies over the years—including one of my lower abdomen and another of a neck vertebrae for which the surgeon had to go through the front of my throat—but I never believed I had cancer. This time, I think I do.

I would hate like hell to leave Peggy alone. I would also hate to leave my "bloggy friends" as Nollyposh used to call them (she was one of four bloggy friends I lost to cancer). A lot of people will find out that they're dying just in the time it takes to write this post, and that won't be long because I'm still doing my experiment with minimal editing.

A few years ago my 56-year-old neighbor, John, drove three hours, climbed a 10,358-foot peak (3,157 meters), and drove home. I saw him that evening, and he complained of fatigue. I laughed, but he said that, no, this fatigue was different. He died a year later of prostate cancer. (I can hardly hold out to clean house anymore, which is one of the reasons I think I have cancer). John died next door, but I never went to see him because I didn’t really know him, and I wasn’t sure I would be welcome. He was also a lawyer, and I hate lawyers. I now wish I had gone because it would have been the right thing to do. I also like being around people who are dying.

Doc Martin is phobic of blood; Nurse Peggy is phobic of cancer. She's so scared that she’s been having to struggle to keep from hyperventilating. 

I've often wondered whether it would be easier to have a terminal illness than to live in pain. One advantage of living in pain is that I have a sense of time stretching before me, and that gives me reason to hope that I will either beat the pain eventually or at least learn to tolerate it better.

My odds of survival are probably good even if I have cancer, but there’s still that 3% chance that I’ll be dead within five years. After ten years, the chance is 30%, and it keeps going downhill from there. As cancer goes, only lung cancer kills more Americans than prostate cancer.

I won’t be getting any more teeth crowned until I have a prognosis. The damn dentist crowned one in January, and that alone drained my insurance for the rest of the year. He wanted to crown another one in April, but I said no, so he squirted some gook into the hole in the hope that it will last until January 2013.

Helter Skelter captures my mood today just as it captured the mood of America in the late ‘60s. To represent the early ‘60s, I chose Johnny Angel. How, in a single decade, do you go from songs about cars and teenage romance to songs about drugs, death, defeat, confusion, alienation, insanity, and injustice?

I like things that mess with my head, so I like Helter Skelter. The good thing about music is that I can turn it off if it gets too intense. With real life, I have to divide myself into two parts. One part thinks, feels, and acts; the other part dispassionately observes the part that thinks, feels, and acts. Pain can become so consuming that it draws my observer part into it, and that's when I go to pieces. I assume that this can also be true of cancer. I really must learn to do better, and I think I'm succeeding. I've felt stronger than ever since my meltdown on Sunday.


P.S. Shelley Fabares is a goddess.




Baxter's not the only one with problems

Peggy had an ovarian cancer scare last month after her yearly physical, but blood tests, two ultrasounds, and a visit to a surgical gynecologist made it seem unlikely. The only way to rule cancer out completely would be an ovariectomy, but her surgeon recommended against it. Peggy had initially said, “Get this thing out of me!” but she trusted her doctor enough to leave it in.

Yesterday, I went to my orthopedist, Mark (see photo), because my own pain has been through the roof lately. Of the many narcotics I’ve tried, I still have a good supply of Vicodin, Norco, Percocet, and Demerol, but none of them help much, and they sometimes make me very ill. I also have the sleeping pills Ambien, Lunesta, Restoril, and Dalmane, all of which work better than the narcotics.

When I go to a doctor, I usually give him a written overview of why I am there, and what I want done. Mark usually does everything I ask. Yesterday, he gave me a steroid shot in my left shoulder, a prescription for Tramadol (a painkiller), and a humongous prescription for the sleeping pill Dalmane (Dalmane is so good that I call it "The Great God Dalmane.") He also agreed to hyaluronate injections (a joint lubricant).

I love Mark. If there were only one thing that I could counsel you to do if you should need surgery, it would be to find a surgeon whom you trust technically and as a caring human being. I’ve had the uncaring kind twice, and I promise you, if you don’t like your surgeon before surgery (no matter how good everyone says he is), you will want to murder him after surgery when you are overwhelmed with pain and despair, and he doesn’t give a rip. I can’t overemphasize the importance of having a good rapport with your doctor. The following is what I wrote for Mark yesterday.

“Pain in my left shoulder still awakens me many times each night and requires ice. Pain in my right shoulder also continues to be a problem. At times, it bothers me almost as much as the left. Bilateral shoulder pain in combination with bilateral knee pain has made both hiking and handyman projects disagreeable if not impossible.

“I saw a pain specialist in April due to shoulder pain and to sunburn-like pain in both shins. My internist said I had Chronic Regional Pain Syndrome, but the pain specialist suspected syringomyelia, and prescribed Neurontin and Tofranil. They helped the shin pain but did nothing for the shoulder or knee pain.

“I am here to get your thoughts about the continued left shoulder pain in particular, and a recent and severe increase in pain in both knees and both shoulders.

“I would also like to discuss alternatives for pain relief. The narcotics I’ve tried don’t help much, and they make me itch too much to sleep. Sleeping pills continue to be my best option—especially Dalmane—but the pain still awakens me ten times or more times each night.

“I read that Tramadol is sometimes used for moderate to severe arthritic pain, and would like to try it. Ultrasound is another option, but I haven’t found anyone who uses it, and my PT said the home units are a waste of money. I would also like to talk about hyaluronate injections—read the enclosed info at your convenience.

“I’m wondering if steroid shots might also help, although I’ve had mixed results from them in the past. I’m especially concerned about any harm they might do to joints.

“I’m now more open to the possibility of partial shoulder replacements, although I had rather pursue any reasonable option before agreeing to a joint replacement.

“In the last nine days, I’ve intentionally lost four pounds to make things easier on my knees, and I’m experimenting with a gluten-free diet. Other ideas would be appreciated.”

I need to stop answering comments for now

I need to stop responding to comments regarding my last post because, after what I wrote to KJ, I realized that my heart is closed. A closed heart doesn’t necessarily preclude honesty, but it sure as hell precludes compassion and respect.

We took Baxter to the vet yesterday—on his eleventh birthday—about a persistent cough. X-rays showed that the cause is most likely lung cancer. Our choices suck. We can do our best to make his remaining time comfortable, or we can put him through a lot of suffering, ourselves through a lot of anguish, and spend untold thousands of dollars and probably lose him anyway.

I’ve never been much good at compartmentalizing my emotions. Yesterday at the vet’s, Peggy had tears in her eyes, yet she was able to listen closely and ask intelligent questions. Yesterday at the vet’s, I stood to one side with a blank expression on my face. After the word cancer, I was too consumed by fear and grief to listen.

Say what you will, much of life is lose/lose. Much of life is about making the best of the worst.

I wrote the second half of my blog entry yesterday after the vet visit. Maybe I should have written it at another time, not because I don’t believe every word of it, but because I lack tact when I’m hurting.

I had rather see entire nations perish than to lose one of my dogs. That’s not an admirable thing to say, maybe, but it too is true.