Messages

My sister Charity has a friend who told her this story about a strange experience he had. He's a nice Italian boy who tries to get to mass every Sunday and when for some reason he can't, he tries to make a visit to church. So this story takes place on such a Sunday- he had missed mass due to having to work, but he stopped into a church to say hello. When he went into the church, it was empty except for one little old lady sitting in one of the front most pews. He spent some time in silence at the altar rail, and then as he turned to leave his attention was again focused on this little old lady. He thought he would say hello as he walked out. She was wearing what appeared to be a veil over her head, so he assumed she was a nun who worked at the parish.

"Hello, do you work here?"
"Oh, no; I work for the Immaculate Heart of Mary. I just do whatever she asks me to do. Sometimes she just asks me to pray on my knees for hours at a time and I tell her how much it hurts and how badly I want to stop, but she just asks me to keep praying, so I do it."

At this point our friend noticed that the veil was not actually a veil but a piece of kleenex opened up and placed strategically on top of her head, and that the pew around her was strewn with all sorts of papers and notebooks. He smiled inwardly, realizing now that he was dealing with someone who was "a couple beads shy of a decade", if you catch my meaning. He smiled at her and said his goodbyes, and her last words were "may the Immaculate Heart of Mary protect you on your travels". He walked down the aisle a bit, and thinking to himself "that was weird" turned to see her one last time. But, of course, the woman was gone. And when he scrambled back to check her pew, all the papers were gone as well. He spent the next half hour scouring the church for her, looking under pews and behind furniture, even checking the confessionals. And then he finally said to himself "well, I believe in God... why is is so difficult to think that something unexplainable happened to me today?"

I think of this because a little old lady came up to me in church this morning when I was particularly anxious. Her lipstick was not quite in line with her lips, and she handed me a holy card that she had clearly made herself. The ink was smudged and the edges were not cut in line with the picture. But she asked me if she could pray for me and of course I said yes. So she put her hands on my shoulders and prayed silently for a few minutes, then walked away. That's all. Nothing miraculous. No disappearing, no cryptic words. I don't think she was an angel in the typical sense, but it was comforting to have this stranger offer to pray for me at a time when I was feeling more than a little fearful. So I think she was working for the Immaculate Heart of Mary too. There's lots of em out there.

Brief Explanation of the genetic testing thing...

So here is a simple, layman's explanation of genetic testing for breast cancer.
They (those science guys) have located 2 breast cancer genes (really mutations on the gene) and have named them BRCA 1 and 2 (for breast cancer 1 and 2). These are 2 particularly dangerous mutations, because they are also linked to an increased risk of ovarian cancer which is harder to detect in its earliest stages. They don't automatically test everyone for the genes; only those whose profiles would suggest that their cancer is hereditary rather than environmental. In my case, although there is some cancer in my family, my young age at diagnosis is enough of a red flag to indicate the possibility of a genetic cause, although it is not absolute. So I will go in on Friday for the blood test, and it will take a minimum of 4 weeks to get any results back.

There are lots of problems with genetic testing, though. One of the biggest issues is that, although they know there are many more breast cancer genes, they have only located 2. So a negative test just means that you do not have one of the 2 known mutations, and does not necessarily mean that your cancer is not genetic. In this sense, a negative result on the gene test is not very helpful.

Not that a positive on the test is great news, either. If you test positive, statistics say you have an 85% chance of contracting breast cancer in your lifetime, and a much higher likelihood of recurrence. You are also then at greater risk of contracting other types of cancer as well. For me, this would mean having to very seriously consider the option of an uverectomy (removal of the ovaries) within the next 10 years or sooner, as well as even making it more imperative to go ahead with the second mastectomy. Even after a mastectomy you are not in the clear (especially in my case since they did not get the clear margins on removal of the tumor) but it does greatly decrease your risk of recurrence.

Another downside to genetic testing is that it doesn't really indicate anything as far as treatment goes. There isn't any preventative treatment for cancer, if you test positive for the gene you do the same as anyone else- keep getting regular screenings so that if you get it, you catch it in the earliest stages. If I test positive, my sisters will then be qualified to take the genetic test as well, if they choose. Some people just feel it increases fear without giving a person any more options than they had before, which is a conclusion I certainly can respect and understand. For me, I am leaning towards foregoing some treatment options that I will be encouraged to take, specifically a drug called Tamoxifen that decreases your chance of recurrence (though not totally) by blocking your bodies ability to absorb estrogen and putting you into menopause. Fertility is something I want to conserve for as long as possible, and I don't fancy the idea of anything that messes with the hormones. Especially since Tamoxifen increases your chances of ovarian cancer (bizarre, aint it?) I'd rather reduce my chances of recurrence by a second mastectomy than by Tamoxifen, as in the big picture a mastectomy has no untoward side effects. Taking the genetic test is just another step in deciding if this is a feasible option for my situation. The reality is that statistics are not very helpful (and really, they have already failed me once). So I just have to make the best informed decision I can and be at peace with it.

Am I boring you? I could go on and on about all that comes next... But for now it's enough to start the process of testing and see what happens. I'm at peace with that, and I'll figure everything else out later.

Instincts

There is a young bird couple living in our apricot tree in the front yard. I don't know what type of bird they are, but I have developed a great respect for them. They are average sized birds, not ornate in their plumage; the female is all gray and the male is slightly larger with gray and white tail feathers. As I sit on the living room couch with only enough energy to watch the wind blow the trees, I just marvel at that bird father. There is a gang of crows that is always hanging out; sometimes 3 or 4 at a time. The crows, with their massive black feet and their threateningly arched beaks are clearly more than capable of taking on the little Gray couple. But Mr. Gray is ever watchful- although the crows outnumber him he is so vigilant in protecting his nest! Every time a crow goes up he chases it down. This will go on for sometimes an hour at a time, with various crows moving in menacingly and Mr Gray swooping up to chase them off- the crows work in shifts but Mr Gray has to fight them off all on his own. But he never complains and puts his little heart into the fight! I wish I could help him somehow, as sentimental and unscientific as that may seem...I know , it's the circle of life. If I saved all the baby birds then it would throw off the food chain, birds would not have enough food, and eventually all the stars would fall from the sky, all because Faith didn't understand the way nature works. But I don't want to help them all, just Mr Gray and his family. After all, he's my neighbor; unfriendly though he may be at times (he sometimes swoops at me if I venture too near his tree). I mean, you gotta admire him- would you have the courage to swoop a human if you were his size?

It's especially on my mind as I have just been approved for genetic testing. I can go into the details of that in another post, but it seems so strange to have to make these decisions that effect my future family without the input of the one to whom it is the most important- the father of my children. It feels a heavy burden at times, although I know I'm not walking it alone.

Chemo Pics

Aargh! I have some good pictures from the last chemo session (halfway finished- can you believe it!!) but I can't seem to upload them to blogger. Even had the guts to take a few baldie shots, in case anyone wants to see my shiny new pate (really a bit too stubbly to be shiny still). Mom, Harris and Br. Robert were there as well. Harris offered me his hair for a wig, but I don't think it would work unless I had the beard as well (this would all be much funnier if I could upload those blasted pictures!!)

Wanted to start a second blog that would just be an index of other bloggers dealing with Cancer or other Incurable DIsease issues (I know there is such an index for other issues like infertility, and it seems like a great idea. You can get a different kind of encouragement from reading about other people going through the same or similar diagnosis). But there are so many! So I think I just might go through and link up the ones that I have been corresponding with on my own blog. Much more manageable that way! But I did like that brown blog background... my blog needs a facelift.

My new fear- my hair will grow in super- curly and gray, and I will look like the rear- end of a sheep. But I have been informed that one blogger had her (formerly light brown) hair grow back in black, and less gray! Chances of that happening are pretty slim, but it does give one reason to hope. And I can always dye it after about 4 months.

Halfway there...

Today is treatment #4, which means that, once finished, I will be halfway there! It's hard to believe, it's all just whizzed by. It is also another landmark treatment in that it is the end of the Adriamycin/ Cytoxin infusions; future infusions will be with a different drug, Taxol. On Taxol your hair can actually start to grow again between treatments (although, ironically, it often makes your eyebrows and eyelashes fall out, according to the oncologist).

And most importantly, my parents, Brother Robert and Harris will be there with me.

One thing I have been avoiding that I know I will regret if I don't do is to get pictures of myself while I am still hairless. I have such a hard time looking at it, but I know this phase in my life will go by so fast- I will want to remember where I've been once it's over. And I will want to be able to show others who are starting out on the same journey, too. I think having Brother Robert there will help, as he is also a cue ball right now and two cue balls in one picture will be less uncomfortable, somehow.. The more I think about it, the better an idea it seems...

This period in my life will go by so fast. By Spring break of next year I should be done with all the surgeries and reconstruction, my hair will be maybe down to my shoulders and I will have received my upgraded mammies. But there are some things about this time that are unique and unrepeatable. For instance, when I am out in the community people look at me with compassion and smile encouragingly. Or look away in discomfort. Or just stare. For the last 15 years of my life, I have worked with people with disabilities; I've always considered myself a compassionate person. But now as I go through this, I know it's not really me and them anymore, I'm ONE of them. Not only in spirit, but in body as well. This feels like another of those odd graces that God is showering me with right now, a "talent" that I will be held accountable for later.

Hey, that's a good title for a book- "An Odd Grace". Is it too much like "A Severe Mercy"? As I write this, I realize that Sheldon Van Auken and I are both reaching to describe the same experience.

More Glam

Today I went to a "Look Good, Feel Great" seminar put on by the American Cancer Society; a seminar in how to take care of your appearance during and post chemotherapy. And I gotta say, ain't it great being a woman? Here we were, a bunch of strangers with nothing in common except our lumps. But that was enough, apparently; we all chatted like old friends, showing each other our scars and helping to draw in each others eyebrows. I was the youngest in the group, but fully accepted; in a sense even an "elder" as I am almost halfway through the chemo and have had one mastectomy, while most of the women were just starting the process. So I felt like a seasoned veteran, sitting back and sharing exaggerated war stories about my wounds and the way things used to be...

Chemotherapy puts your body into a menopause- like state. Not full menopause, but many women report hot flashes and mood swings. For me, it has just been hyper- emotionalism. EVERYTHING makes me cry. It's really embarrassing. At the class today I got to be the head wear model for the group (ironic, since I haven't even looked at my OWN bald head yet) so I was up in front of everyone and someone mentioned the recent earthquake and I started tearing up. And then someone else mentioned that her hair had just started to come out this morning and I started leaking again. Then when I went home the dog was panting and her lip looked like it was kind of stuck on her dry tooth and she looked so pathetic that I wanted to spring another leak... oh well. I'm not grumpy or depressed, it just seems that my emotions are very close to the surface (and my reason somewhat submerged). I am still working on a letter to Sheila but it makes me cry to write it so I write in short bursts.

I went to a prayer meeting last night- it was really a warm, welcoming group of people. We prayed the rosary and crowned Our Lady for the feast of Fatima, and the woman who runs the group asked me to pray over another member of the group who is dying. Well, I'm not really accustomed to praying over people and even less so when other people are watching me; there was only one solution. I put my hands on her and burst into tears. Honestly, you'd think I was a professional mourner or something, the way I go on. (Once in confession a priest said to me, "we'd better stop now, or you're going to dehydrate!" And that was BEFORE chemotherapy!) But it worked; everyone later told me how moved they were by my prayers. So let that be a lesson to you; when in a tight spot, cry. Works every time. I should know.

Nietzsche

Now I know from college philosophy classes that, while drawn to the stories of the early martyrs who gave up their lives for their faith, Nietzsche was repulsed by what he saw in Christianity as baptizing passivity and inaction. He was disgusted by the emphasis on such virtues as humility, forgiveness, etc... I think there is still this temptation in our modern culture to see things in that light, despite the evidence of our own experience to the contrary. Humility, forgiveness, just try it and we all see try how horribly difficult they are. Certainly not virtues for the cowardly.

On those lines, I am reading a book by Father Tadeusz Dajczer called "Inquiring Faith". I only read about a page a day, but I use it when I am trying to pray but can't concentrate (most of the time, lately). And everytime I open it, I find some idea or thought that feels like it was written just for me.

A few days ago I read about the parable of the talents. So the word "talent" in the bible actually referred to a monetary currency, and not a personal gift or strength as it means in English. I'm just going to quote the book for the next paragraph or so, because I was so touched by it.

God waits for us to look with the eyes of faith at all the experiences we live through, especially the difficult ones. A talent is a gift and material, but at the same time an opportunity. Christ, in giving you a talent, trusts you and waits for you to take proper advantage of it. If he has given you abilities, then he is not indifferent as to what you do with them. If, however, you did not receive these abilities,- this is also a talent. A talent is not only receiving something, but also lacking something.

In the light of faith, the good health you have is a talent, but bad health is also a talent. You can equally waste good health and even more so, the lack of health. It is a talent if you are unable to pray, yet you consider this a misfortune. It is important what you do with your inability to pray; maybe you bury this talent and say, "well, I will just not pray". But you can gain so much from it! This inability should intensify your hunger for God. The very search for the deeper understanding of personal experiences is to profit from the talent. Difficult graces are the most valuable talents of your life.

So there it is, take it or leave it, poor Mr. Nietzsche. But I believe it wholeheartedly! After reading this part of the book, I went through my life and looked at the big disappointments and hurts; looked at myself with all that I would wish to change or improve. All the opportunities he had given me to grow, some which I had used and some which I had squandered. And I suppose these are the types of lessons that we have to learn and re-learn for the rest of our lives. But I'm sure there will be many more opportunities to come...