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.

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.

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. :)

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 news...like, 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!

To Everyone Else, You are Someone else

It has happened again. I just got word that another friend has been diagnosed with breast cancer.....well, at least it looks like breast cancer. She's due to have a biopsy soon. I found out in an email that she sent out. At the last part of the email, she commented "I have never smoked, never was on the pill, I breast fed all three babies and there is no breast cancer in my family."

How well I know that sentiment. We do everything right. In my case, I only had one baby who I breast fed, and I also was a vegetarian for about 4 years. I was active, I wasn't over weight (then). I biked like a fiend.....and still I got breast cancer.

You're sort of stunned. There is an aspect of "why me?" In my case, I didn't know I was supposed to be doing self breast exams...I was in my 30s. I didn't think you had to worry about that until you were in your late 40s at the earliest.

Dumb-butts abound. I remember someone saying "Well, it must have been something you did." Yeah. Right. Tell me what it is so I can scream it from the mountain tops and let everyone know what to avoid.

The bottom line is this: anyone can get breast cancer. Even men. In April of 1998, I painted this picture which is entitled "To Everyone Else, You are Someone Else." It is a title with a double meaning. My first intention was to indicate to all women, that the thought that "It's not going to happen to me, it is going to happen to someone else" is entirely incorrect because to EVERYONE else YOU are the someone else.

The majority of breast cancer diagnosis happens to women who don't have breast cancer in their families. It often just strikes out of the blue. I used to get angry at doctors who kept on warning women who had it in their families to be careful. Well, heck, we ALL have to be on guard because most of the cases are not hereditary and if they are, then those women have a little warning that they have to be careful. I had no clue. Getting cancer was the last thing on my mind.

The other aspect is that we are all something to others. Cancer touches many who are not directly related. Around the image in the center is all sorts of relationships...familial, as well as occupations, most of what I wrote are occupations typically occupied by women, but not necessarily so. Breast cancer can touch your mother, your hygienist, your teacher your....fill in the blank.

This particular painting was done for the Susan G. Komen Art for the Cure and won a prize in the New Britain Art for the Cure in 1998, I think it took curator's choice. It is not a comfortable image to look at....and yes, I took some design licenses....I put a second "arm rest" to make a cruciform figure, even though for a unilateral mastectomy you only have one. In addition, for me, I didn't have an axillary this time as I was having a mastectomy after a lumpectomy on the same side, but I got the idea from my experience. The greenish hair cap, the "donut" pillow forming a halo...all of that is what I had.

My daughter hates it. I love the color of the background....Alizarin Crimson which reminded me of the same color of CAF (the red is the Adriamycin). I don't mind that it is uncomfortable. It is a piece which is making a statement, and sometimes those pieces aren't pretty. Sometimes those pieces make you take action. At least I hope so.

Sometimes I think that that red of the Alizarin Crimson should indicate anger...anger that would make us all stamp out breast cancer and make sure that every women gets regular mammograms and takes care of themselves....and we need to take care of those who can't take care of themselves and help them through this journey which brings new discoveries....not all of them pleasant.

No Black Allowed

Recently, I had to go to a funeral. My god-mother had died from heart issues at 80 years of age. She had had many blows in her life, but she was always loving and strong.

All of my usual funeral clothes were ...too tight. I usually wear bright, clear colors, peaches, turquoises, purples, red. None of this seemed quite appropriate for a funeral in the midwest amongst people who wouldn't remember me or barely knew me.

All of this brought back some memories of when I was first diagnosed with cancer. I had only been married for three years. I was in Connecticut, which never felt quite comfortable. The thought that I might die and be buried among people I had only had short association with in a part of the country which I didn't love as much as my native Michigan, left me cold. I soon found that that worry wasn't a big one.....my husband's family is Cuban and at least among his family, preparing for death isn't common. In my family, when the first person dies, a whole plot is purchased. So.....since no plot was purchased, I could be buried where ever I wanted, and if I was lucky, there were still spots available in the Broberg lot in Athens, MI or in Augusta, MI.

As it turned out...I needn't have worried. It did bring to mind, however, how much easier it would be if we all made it clear what we wanted to have done at our funeral before times. Cheap casket, or cremation please, whichever is cheaper...and have a BIG party instead.

I am still amused at how your mind tends to flit to such things. But, here I was. Kohls is the only place in town to get clothing, and I didn't have enough time to go elsewhere. As I have mentioned before, I don't wear black. Most of the clothes in Kohls were black, or looked somewhat like Omar the tent maker had designed them, or they were for svelt young things which when put on my body looked like a psycopath's idea of camoflaging a female tank...or that I was pregnant....or all of the above.

I was snarling in the aisles. My daughter was with me....and said "Why do you have to wear dark colors anyway?" I explained that usually somber colors were in order as a token of respect, but that it was pretty outmoded these days anyway. I didn't much care for the concept because I felt that funerals should be a celebration of life, and I wanted it to be a big party.

She said, "I'll make a note of it. On your funeral notices will be the line : No Black allowed."

Learning to Say "Yes" in English this time!

Hmmm...very very interesting...seeing my words in Hindi!

My diagnosis with stage IV recurrence of breast cancer and the experience was entirely different from the first time I had breast cancer, even though it was only 4 1/2 years earlier.

The first time, I was a new mom, I had recently left my position at the museum and had become a free-lance curatorial consultant. I had only moved to Meriden, CT only three years before and didn't know many people.

The second time around, I had been active in church, I had been involved with the Susan G. Komen Race, as well as the American Cancer Society's Relay for Life. I am used to public speaking and had often been called upon to talk about the cancer experience and to encourage young women to do self-breast exams and to follow up with anything which would cause alarm.

I had started a very large neighborhood association with two other women and was very well known in the community. When I was diagnosed the second time, I felt like I had become the Breast Cancer Posterchild. Here I was, young, relatively good looking, reasonably thin, with an extremely photogenic 4 year old daughter. Needless to say, I was featured in several newspaper spreads on both the Komen Race in New Britain as well as the Relay for life in Meriden as I participated in both, even though I was going through chemotherapy.

I had lots more friends and friends who were available during the day time. The first time I had cancer, I drove myself to chemotherapy appointments and back. I scrounged to people to help me look after my daughter when I was sick. The second time, lots and lots of people offered to help. I had friends bringing food, friends driving me to appointments, and lots of people who offered to look after my daughter for me when I was at appointments (which never seemed to end), tests, or getting treatment.

It was humbling. Here I was, better able to take care of myself than I had been earlier because Taxol didn't make me as sick as the CAF treatment did. Yet, people were offering help in anything I needed. People I didn't know were sending me notes and calling me to offer their prayers.

I learned a very important lession. Leaning to say yes, even if I didn't think I needed the help. All of these people cared for me, and wanted to participate in anyway they could to help me get better. Sometimes, learning to say yes is harder than doing it on your own....and saying yes, even if you don't think you need it is an important gift to the giver.