Wednesday, May 27, 2009

Miracles, and when Faith, the medical field and Government clash

The picture at left is a stained glass window on exhibit at the Navy Pier in Chicago. I think it represents the bits and pieces which I have been thinking about for the last week or so.

My heart stopped when I heard about the woman who fled with her son rather than be forced to complete a cancer treatment regimen. This is a really tough call. I was sad for her and her son, that this was what they were brought to.

I can understand her fear and concern over her son's first chemo treatment. I've had horrible treatments (trust me, CAF wasn't fun), and I've also had ones which were not difficult to bear (once we figured out what the side effects for me were-- CMF and Taxol were easy). I can't imagine what it is like for a parent to have to watch the discomfort and vomiting which come with the first week of treatment.

I also understand religious convictions about not getting conventional medical treatment. I remember when I was diagnosed the second time, I was talking to one of my daughter's pre-school friend's mother. She is a Christian Scientist, and spoke with me about it. She also kindly gave me a copy of Mary Baker Eddy's book. I believe that God (or the higher spirit if you prefer) can heal. I believe that I am alive because of the intervention of many people who prayed for me.

However, I also believe in medicine. There was a joke which I heard slightly before being diagnosed with cancer, which sort of sums it up for me: There was a guy who was diagnosed with having cancer. He prayed and asked God to heal him. Suddenly, he heard God's voice telling him he would be healed. He went to his surgeon and told him he didn't need to have the tumor removed because God said he was going to be healed. He went to his oncologist and refused treatment because God said he was going to be healed. He told his radiation oncologist the same thing. A while later he died from his cancer. When he reached heaven, he asked God, "Why did I die? You said I would be healed!" God answered, "I sent you my best surgeon, my best oncologist and my best radiation oncologist, and you refused each one!"

I do think that God can work through conventional medicine. I also know that the ultimate healing is death.... I am impressed with the teachings of Mary Baker Eddy even though I have been told by theologians that her theology has some problems. I'm no theologian, but I do admire her incredible intelligence and her ability to move beyond the restrictions of the world in which she was born.

But lets get back to the mom and her son. Is it right to force someone who doesn't believe they should get medical treatment because of their religious convictions? I don't think so. But on the other hand, what was the boy's understanding of this, and how did he feel? Certainly, a 13 year old shouldn't be allowed to make all of his own decisions, but he is old enough to know what his chances are with conventional treatment and without conventional treatment. He's also old enough to understand his own religious convictions.

I am grateful that they came back and that the charges were dropped against them. I'm hoping that he has a full and complete recovery as it sounds like his chances are quite good, although the road to health is not a fun one.

But, it gets back to the intervention of the Government into an individuals choice about their health. Certainly there are other cases where someones misguided religious beliefs negatively impact the children. I suppose that's the point where government intervenes, it is the assumption that children can be negatively impacted by the decisions that their parents make for them. I suppose you could, although it is hardly comparable, say that it is similar to parents believing that it is OK to do drugs and physically abuse children and the government having to step in to prevent it. That's an extreme example, but where does the right of the individual end and the Government's need to interfere stop?

Some people believe that inoculating children against whooping cough and other childhood diseases is wrong based on religious beliefs. There are others who associate inoculations with diseases or conditions such as autism. One of the problems is that individual rights should stop when they start impacting the rights and choices of others.

For example, I chose not to smoke. I resent it when someone imposes their smoking on me by smoking in a closed environment. I have to breath that air....and I had chosen not to smoke. Why then, am I being forced to breath it because of someone else? When you apply this to inoculations, it is a bit scarier, because the individual is not inoculated, then he or she can negatively impact others by exposing them to the disease.....but it is a quandary because I don't think that the government should involve themselves in the religious beliefs of individuals.

Do I believe in the power of prayer? Absolutely. Do I think it has a positive effect on the person who is being prayed for? Absolutely, in fact I also believe it has a positive effect on the person who is doing the praying. I don't care if you call it "God" or a "higher power" or what, spirituality does have a part to play in this puzzle....too bad we can't figure it all out and determine what is right for us to do, both individually and collectively.

Saturday, May 16, 2009

Is what you heard really what was said? or the importance of having a buddy

I think one of the most important things for a newly diagnosed cancer patient to do is to take a "buddy" with them to the appointments with the doctors, especially in the early part of the process. I think we all tend to have our brains shut down and our ears close when we hear that line, "I'm sorry, but the biopsy shows that the tumor (microcalcifications, whatever) is malignant.

I have encouraged people that if they can't have someone there, then take a tape recorder. I know that on several occasions my brain just couldn't really grasp what was being said. In other cases, my understanding of what was said was entirely different than someone elses. It helps just to have someone else's perspective.

The prime example of this was when I had finished my last chemo treatment in 1998. My oncologist was Samuel Bobrow of the Hospital of St. Raphael in New Haven, CT. Sam is an excellent oncologist and a great guy. We were in one of the rooms and he had gone over my latest test results and we were looking at a film showing the metastesis to my pelvis.

He turned to me and said, "Well, we've done all we can do right now." I was shocked. I can't remember what he said next but I know I took a deep gulp and said "I know that doctors currently don't like to do this because it varies from person to person, but how long do you think I have?" He startled. "What do you mean?" I said, "How long do I have to live?"

"OH! That's not what I meant! What I meant was you have completed your treatment. We've done all that we can do at present and everything looks good, but given your history and given the fact that it is in your bone, we can't do anything further. We will keep watching you, and checking to make sure that nothing shows up. This will be a chronic disease that you will have for the rest of your life, but your death is not at this p0int iminent. "

Wow. I had heard what he had said, but I didn't understand it. While he meant that I would be managed and kept patched together until either the disease showed it's ugly head again, or they developed more methods to combat it. That certainly isn't what I had "heard" and having someone there might have helped out....but that brings up another point, if you don't understand, or even if you think you do, repeat what your understanding is back to your doctor so that you can be very clear on what is going on.

Friday, May 15, 2009

What do you tell your mother?

Not too long ago, I had a rather interesting conversation with my mom who presently lives a great distance away. I had mentioned to her that I was having great pain in my hip and was trying to figure out what it was.

A couple of weeks ago, she called and asked me if I had had a bone scan yet. I took a deep breath. I hadn't seen my oncologist since January and I wasn't due to see him until May 14.

I wasn't scheduled for a bone scan, and I had my last pet scan in November 2008. I had gone to my general practitioner to see if we couldn't rule out some things and try to figure out what to do. I had been doing lots of poking and proding trying to figure out if it was more cancer in the bone, or if it were residual damage from the radiation I received in 1998.

Since it wasn't in a joint, I was pretty sure it wasn't arthritis. But it was very strange to me to think that it was damage from the radiation. Why did it take so long to show up, and why did it hurt when I wasn't active, and not when I was digging in the garden or whatever.

My deep breath with my mom was having to tell her what the oncologist had told me in January. If it were cancer, there wasn't anything to do except continue what I was doing (taking Fosomax and Arimidex). If the pain got too bad, then they would use radiation to try to stop it.

These words were NOT what mom wanted to hear. So...what do you do? Do you tell them the whole truth or just gloss over it? My theory has always been that it is better to tell them the truth and figure out a way to deal with it.

When I talked with the onocologist again on Thursday, he explained that radiation was very strange. Sometimes people who had had colon cancer will have radiation damage flair up, then go away, years after having had the original treatment. In addition, radiation causes fiberous scar tissue which if it isn't moved, contracts and causes pain Since I had been much less active this winter than I usually am, this was probably the cause of my pain.

So...the solution is to do stretching exersizes, particularly useful would be Yoga....I guess that's a good excuse to get a Wii. :)

Friday, May 8, 2009

Remaining Positive in a Negative World

Sometimes it is really hard to stay positive in a negative world. I know that after having cancer, sometimes I'm not as forgiving of people, nor as patient with them. I feel like "hey, you turkey! Shape up! Don't you know that you could have some really bad news? Like significantly bad, maybe you have cancer?"

I think I suffer idiots much less than I used to. I also know that I have been the idiot to others.

Sometimes having cancer can make us angry. Sometimes it just curls us up and toasts us on the inside. Sometimes it makes you sit and say "why me?"

This gold iris is for a survivor I know. Someone who has taken it up to spread some good to others who have come her way. Recently, someone on the art quilt message board I follow said that she got tuition to go to a seminar for art quilters. Sometimes these classes can be costly. While the tuition may have been offset by the group, she still had to get transportation to the seminar, cover her room and board and also get the supplies she would need. She put on the message board that she was selling some of her work and "stuff" so that she could raise the money to go. Notice, she didn't ask for a hand-out, just a hand up and was taking the initiative.

One of the members of the board, who I happen to know is a survivor, helped this woman out. She didn't have to. She just spread some good feelings, or Karma or whatever and stepped in.

While stuff may happen, and it can be pretty awful to us, we can also take the stuff and shove it....and take the oportunity to do good. Just think of what the world would be like if everyone, survivor or no, took this viewpoint. I believe in random acts of kindness. Please, God, just help me to keep that in mind when I'm ready to blow my stack.

Shoshanna, this one's for you!