" I implore you, my child; observe heaven and earth, consider all that is in them, and acknowledge that God made them out of nothing (ex nihilo), and that mankind comes into being in the same way..." 2 Maccabees 7:28

Friday, June 27, 2008

Faith, Hope and Charity

"Hate comes naturally to us, but love is a lesson that must be learned and learned, again and again..."

Anyone who has parents, or been married or had children or siblings or friends or even had a damn dog knows that love does not come naturally, you have to work at it. It is less a feeling than an act of the will, or so they tell me. Of course, there are those times when it just wells up in you and you are so filled with love that you can do whatever love requires without barely counting the cost to yourself... but let's face it. Those times are rare and beyond our control to bring about.

So why should it come as such a surprise to me that faith and hope, like love, require some effort on my part? Rarely do they well up and flow as easily as tears, from the deepest, best part of myself (not even my tears come from there. As a matter of fact, there is very little produced in those mythical nether regions of best self...) Why should it surprise or disappoint me that at times it is very hard to have hope that the future still holds beautiful things for me, or to have faith that he hears me even through this dark time of waiting and uncertainty? Sometimes it feels like an uphill battle to maintain faith and hope, but really, that's probably just the nature of the stuff, like love. I think that probably the best thing to do, when I feel that downward pull into depression or despair, is to make an act of hope. With what is left of my tattered, frayed, threadbare little will, to CHOOSE hope, to CHOOSE faith (the operative word being choose).

I believe You hear me and love me. And whether that looks the way I imagine it or otherwise, there will still be beauty and meaning in the plan You have written for my life.

So I guess I just need to roll up my sleeves and get back to work.

Sunday, June 22, 2008

The check is in the mail

Well, yesterday I received my economic stimulus check, and I already know where it's going... mushrooms. Yes, you did read that right, mushrooms. And parent essential oils. And a couple other things that I doubt the president was expecting. You see, last week I went and saw a cancer specialist who specializes in Eastern medicine alternatives; I was very eager to see him because he had come highly (if slightly grudgingly) recommended even by the nurses and doctors at Kaiser.

It was not easy to get in- I had to first turn in all my surgical and biopsy reports, blood work and list of medications before I could even get an appointment. But on the day I finally received all the paperwork from Kaiser and turned it in to his secretary, there just happened to be a cancellation for the following day so I didn't have to wait the usual month to see him. Nice!

After seeing the waiting room with it's heavy Eastern decoration and that twangy kind of music that you hear in Asian restaurants (you know, the stuff that sounds like two people tuning their guitars- bong BONG bing BING and then some reverberations) I wasn't sure what to expect. A whole wall full of jars full of curiously lumpy things that I couldn't identify (I swear there was one with wasps nest in it) and a heavy, pleasant odor of earthy herbs thick in the room. I had been told that his reputation was going to his head, however when I finally met him I thought his head to be very well proportioned to the rest of him, and did not get the impression of any swelling. It was a head that was no more Asian than my own, however, which surprised me. I had noticed that his last name sounded more European than Asian so had assumed his mother must have been the Asian one. When I finally met him face to face, he was as Caucasian as I was (although no on is really as pale as me) although he did take all his notes in Chinese.

In talking, it felt like he was really in between both Eastern and Western medicine- he was certainly very respectful of and knowledgeable about all the cancer treatments I had already received, and didn't seem to find one type of medicine superior to the other, but complimentary. I actually had to swallow my disappointment, though I appreciated his directness on the topic of Tamoxifen (which I've mentioned a few times in previous posts); I had hoped he could recommend some alternatives but he was very clear that although I could go the "natural"route on this one, Tamoxifen, even with all its undesirable side effects, was my best chance for keeping cancer in remission. He also drew up a plan of herbs and supplements to take for the rest of chemo to boost immunity and make recovery faster once I finish (hence the mushrooms).

He did mention some very interesting factors that have come to the front in cancer research; many have easy and practical applications. I'll share a few of them here, so if you're not into this stuff, you can stop reading now (but remember, an ounce of prevention is worth a pound of cure...). Or you can google them yourself.

1. Iodine- can't remember what this does in relation to cancer, but it is an essential nutrient. It has been added to salt, but our culture is moving away from eating home- cooked meals towards more pre-prepared foods and restaurants. Sea salt is not iodized. Restaurants do not use iodized salt because it changes the flavor of food, I don't know if canned foods use iodized salt or not. Regular old Morton's iodized salt is easy to get. There is also a simple and fairly inexpensive test you can take to check your iodine levels; some places offer it free to cancer patients for compiling research. You take 50 mg of iodine and then collect your urine for the next 24 hours in a big jar (sorry to those reading this while they are eating). Then you send the whole 24 hours worth of wiss- wiss to some big lab somewhere and they tell you how much your body retained; if your levels are normal you would pass about 90% of it back out in your urine. This is called the iodine load test, done through FFP labs if you're interested.

2. Melatonin: a hormone that regulates sleep patterns, now known to also be a tumor suppressor. It is produced in darkness, the more complete the darkness the more melatonin produced. Studies done on people who are completely blind show that they have an almost non-existent rate of breast cancer due to the fact that their bodies are producing melatonin 24 hours a day. Best to sleep in pitch blackness or wear a mask and not turn on lights when getting up for bathroom breaks if possible (my dad says it's not) to avoid interrupting the production of melatonin. Many people who have difficulty getting or staying asleep have low melatonin; we also live in a culture where people stay up until late at night and then sleep in late the following morning when the sun is out. Streets are also lit 24 hours for safety which makes it hard to get into a truly dark environment. I found online that there is a saliva test kit available to check melatonin levels (more bodily fluids in a jar), but the specialist didn't mention this to me so it I'm not sure how reliable the results are. I'll ask him when I see him in a few weeks.

3. Vitamin D- This was a biggie, another tumor suppressor. Although some comes from food, we get the bulk of our Vit. D from exposure to sun. In fact , people who get skin cancers have a lower risk of other types of cancer, presumably because their Vit. D levels are higher. Sunblocks also block out Vitamin D absorption, but this is NOT to say throw out your sunblocks. Limited amounts of sun exposure a day (I 've read about 15 minutes) can give you sufficient vitamin D. Milk now comes fortified with vitamins A& D but many individuals or ethnic groups don't drink milk. Your regular doctor can test you for deficiency (blood test) and supplements are available over the counter.

So that's it. The whole thing was a positive and enriching experience, really; not the first time that It's dawned on me how these unexpected life changes open our horizons to so many new things. I'm even considering, in a few months, going to a special retreat house where you stay for a week and bond with other former chemo patients while juicing wheatgrass and doing yoga. Heck, maybe I'll even do a colonic cleansing someday! Well, maybe not. But it would be a great blog post, wouldn't it?

See ya.

Monday, June 16, 2008

The Humble, Heroic Liver!

Chemo # 6 down! 2 to go! John took so many pictures that felt like Angelina Jolie without the lips (but my tongue felt pretty thick from the drugs). And Christina didn't get woozy at all! And since Charity is not working this week, she got to come too. We all talked the whole four hours, they made chemotherapy fun, despite the fact that I forgot my Pente game and a deck of cards. When this is all done, it will be so nice to look back on all the pictures and remember this whole amazing experience. John, Christina and Charity can even make chemotherapy fun!

Through all this, I have really learned a new respect for the body. Fr. Walter Ciszek points out that the body often gets a bad rap among Christians; being blamed for every sort of vice, as if the will and the reason held no blame! I remember feeling a real compassion for my body after the first biopsy. As anyone who has had a needle core biopsy knows, they don't just take one or two tissue samples, it's more like twenty! And since I'm so flat chested, they really had to work hard to get those. You are lying face- down on a table with a hole in it, and they pull your breast tissue through the hole and put you in a mammogram machine, squeezing that poor little unassuming orb for all it's worth. Then they take the samples with a hollow needle. It certainly wasn't fun, but it was not horrifying either.

The next day I was standing in front of the mirror- my poor right breast was bruised purple and yellow, so full of needle holes so close together that it looked like an incision. Who would've though that that breast, previously so unnoticed would now be so horribly manhandled and subject to the most rigorous scrutiny? Our bodies- working so hard to protect us with so little recognition or gratitude! "If it offends thee, cut it off!" says the bible; I had been so eager to get on with the surgery and remove the source of those silent, deadly tumors but in this moment I felt a strange grief to know that in a short time, I would be removing that breast which had been with me for so long. And replacing with a ziplock bag filled with saline.

Then today my recent blood work came back; the nurse said they were still a bit concerned about the liver. Working so hard to filter out all these toxins I've been pumping into it (I THINK that's what livers do, maybe a biology wonk can correct me if that's wrong...) that there is a possibility of needing to lower the dosage, change drugs or postpone chemo at some point. But it's not highly likely, considering those numbers have been fluctuating during this whole time. Pobrecito, little liver! Thank you for all your hard work!

This post is all over the place. But, hey, blame the chemo brain; or better yet, blame the chemo drugs. My brain is just doing it's best to cope.

Sunday, June 15, 2008

Oh. My. Goodness.

Now I'm all for modesty, don't get me wrong, but even a virtue can be taken to an extreme. Chesterton, in his book "Orthodoxy" explains that an isolted virtue separated from the influence of all the other virtues can cause more damage than a vice, and be harder to recognize; for instance patience needs to be tempered by justice or it could morph into passivity; prudence needs generosity or it risks becoming miserly; courage needs wisdom... you get the picture.

I guess it's easy in a culture such as ours to be hyper- vigilant. Here is a website my sister sent me; it reminded me of Chesterton. Here, in my opinion, is an example of modesty functioning in isolation.

www.wholesomewear.com (you'll have to cut and paste, can't figure out how to make these &*$#@ links active!)

It's kind of sad. We're here to transform the world we live in, not remain so totally apart from it that we can't engage our culture. These swimsuits give more coverage than you would need to attend church on Sunday! I'm not trying to poke fun, it just seems so extreme.

Speaking of the idea of virtue- I remember a nun explaining to me that we all have a natural bent toward certain virtues by way of our personalities; some of us are naturally patient or naturally brave. However she said not to mistake these inborne qualities for real virtue- they need to be perfected and elevated by developing the opposite virtueto be authentic. Real virtue has to be learned. So someone who, by nature is quiet and patient is practicing real virtue when they speak up and stand for truth even when it means acting against their own placid personality. And conversely, someone who is naturally brave and outspoken is truly growing when they can remain silent in the face of something that sparks their ire. This is an encouraging thought to me, because it means that we can never judge by the exterior, or compare ourselves to others. So while I may need to work on courage and speaking up for the truth even if it may mean being disliked, some of those brave souls whom I admire so much may be trying to master the art of keeping better guard over their temper.

Chemo on Monday. Don't know how long it will be before I am back online. Will post as soon as I can, as I know there is nothing more frustrating than intermittent postings. What excuse will I use once chemo is over? I guess I'll have to figure that one out later.

Thursday, June 12, 2008

The Kindness of Strangers

BroRo, Harris and I at a chemo session. As mentioned in earlier posts, Harris (dark hair) offered me his hair for a wig. I considered it, but in the end couldn't bear to think of separating it from the beard. They are such a matched set.

Elephants have always been my favorite wild animal. They say they are very social creatures; they travel with their sick and their young in the center of the herd for protection. As for the dying members of their pack, they do not leave them behind in order that the herd may move faster, rather they have actually been known to have two strong elephants prop up a sick elephant on either side and walk along with them lending their strength and support.

This is the best analogy I can think of to describe how my own loved ones responded when I received my diagnosis. They didn't grieve, they mobilized. I was protected, encircled, propped up... I had always seen myself in the giver role, and never imagined that I would be the one on the receiving end of such care. But there it was and I couldn't have gotten by without it.

Like Christina said; when asking God why these things happen she felt the answer "so that we can love each other". For all the love that I have received from these people closest to me, one thing that always moves me is the love I have received from strangers.

Yesterday I was trying to make a phone call to someone I had not ever met but knew her husband socially. I had heard that she had recently received the same diagnosis and I wanted to talk to her. I accidentally dialed a wrong number, however, but of course did not realize it. When the phone was answered, I told her who I was, that I was going through chemotherapy like her. She seemed confused; I reminded her that I had sent her an email and that I knew her husband. She then asked, "oh, really? how is he?" Well, at this point is was obvious that I had a wrong number. But she then didn't want to let me off the phone! I could hear the genuine concern in her voice as she asked me how I was feeling and said she was sorry I had cancer. She wished me the best of luck and told me she would be thinking of me. All this care from a total stranger.

Today I was in a bookstore and a stranger walked up to me and asked me how I was doing. We talked for twenty minutes and she hugged me when she left.

And a few weeks ago I was sitting in a cafe killing time and one of the employees came up to me and asked me if he could get me anything. I said no, he proceeded to ask how I was feeling and if he could help with anything. He said "I used to wear a scarf too, but I was going through... chemotherapy?" He phrased it as a question as this was the time when I still looked, in Eileen's words. like a "chemotherapy wannabe" ( I still had my eyebrows and eyelashes and my skin tone looked relatively normal). It ended up him and his mother were both diagnosed with cancer at the same time -they went through chemo together.

And then there are all the little things- people running to get doors for me, going out of their way to give me the sign of peace at mass, sending me cards or small gifts in the mail, smiling at me in line in the grocer store in a way that goes beyond the disinterested friendliness that we reserve for strangers in our culture. People don't always say the right thing and sometimes their efforts are clumsy in their earnest desire to be of comfort. But I'm sure that heaven is not blind to these small gestures of compassion; nothing is lost or wasted or forgotten.

In an earlier post, I mentioned my trip to Medjugorje and the priest there that heard my confession on Dec. 31 2007, the day before the beginning of what was to be the most terrifying and amazing year of my life this far. I told him about this growing desire in my heart to love God more, not for his gifts but just for himself and my frustration at my inability to do so. He responded simply "the desire to love more comes from the desire to be loved more. God is preparing your heart to show you how much HE loves YOU."

How prophetic that has turned out to be.

Wednesday, June 11, 2008

Another Inadequate Metaphor

"The tongue is a small organ with great pretensions..."

This is from the bible, but I don't know where. I'm Catholic. And I'm too bloody lazy to look it up in an online concordance or anything equally sensible.

Cancer hasn't really changed me much, or at least not in the ways I would've hoped. One of my most vexing faults is my pretentious tongue. It makes itself known in a variety of ways; sarcasm, telling embarrassing stories about other people for the sake of a laugh (poor Trish, she bears the brunt of this one... but she gives me such great material!) I could go on and on, but this isn't a confessional. My point is this- you'd think that after having faced the possibility of my own death, I would be sufficiently humbled to start to overcome these habits. You'd be wrong. I'm still sarcastic as ever. I tried to give up sarcasm for Lent but didn't even make it through Ash Wednesday.

People sometimes ask me if this experience with cancer has changed me, and I'm sure it has- any significant life experience is bound to do so, or else it wouldn't really be significant, would it? But the change I notice in myself is mainly that I feel more dependent on God than ever before, more disabused of the notion that I can do it all myself. Good health, financial stability; these are all gifts from God but they are not Himself.

I'm trying to come up with a visual metaphor and the best I can do is still rather hackneyed, but... Try this one on. A boater, out on a lake in dark, inscrutable waters feels his boat sinking. so he makes for the safety of the life raft. In the life raft he's dry and safe and secure, but only for awhile as he hears the hissing that indicates he's sprung a leak. So, still exhausted from the trauma of the boat accident, he has to shore up what's left of his fortitude and swim out to the buoy, facing all the unknown dangers of the water again. He finally makes it to the buoy, only to find that it's rotten and won't hold his weight for long...so out into the waters again to find the next resting place.

In other words, I used to think that there were SO MANY lessons to be learned. Now I think there are really very few; only Love and Trust. And just when you think you've learned them, God ups the ante and you begin again.

So. Back to dog paddling, I guess.

Sunday, June 8, 2008

Little Fighter

This is me and my dog-niece Alice, wearing a sympathy scarf. It has nothing to do with my post. Actually it has nothing to do with sympathy either, as the scarf was forced upon her and she was held in my lap under duress for the photo shoot.

Sorry, dear readers, for my infrequent posts. This last session had been particularly tiring, although I don't have the brain fog that I did in sessions past, which is nice. In fact, I read a whole book yesterday- 400 pages in one sitting. So I feel a little more like myself- nerdy.

Today I went to a chiropractor for the first time ever. A really nice couple that I had known for awhile from church told me recently that they are both chiropractors and offered me free sessions to help cope with the effects of chemotherapy. I did not know much about it, but know other people who have had very good experiences with it. And the whole chemotherapy song- and- dance can really make you feel like you are out of control of your whole healing process, that you are dependent on these nasty chemicals that they put into you for your survival. So to try something different felt very...well, empowering. (For some reason, I don't like using that word... it sounds so Gem and the Holograms, you know? "Showtime, synergy... " yech!).

Anyway, although they have an office in the city, she was at home with her kids today and I met her there. When I got there, she was putting her baby to sleep and I was talking to her very precocious 3 year old, D, in a pink leotard with a tie- on ballet skirt. We read some books and she showed me some of the gifts that Santa brought her. She would lose her train of thought and break off in the middle of her own sentence with something unrelated, like "see how tall I am now" standing up and showing me. I confirmed that she was, indeed, humongous and she nodded solemnly and we went back to the story.

When it was time for mommy to work, grandpa came to take D for an outing. But she didn't want to go; told them she was going to stay and help mommy with her work. Grandpa tried his best to tempt her, even insinuating that there was a trip to Jamba Juice in the deal. She hesitated at this one, then told grandpa decidedly to" bring me back a strawberry shake, I'm going to work on Faith". She was so determined! Mom even suggested that she wait and work on mommy later, but this suggestion was not cutting the mustard as she responded "but you don't need any help! I want to work on the ones who don't feel good!"

So when I was lying on the table, her mom told her to help by praying for me as mommy worked. This was a fulfilling enough assignment for a time, but she soon said in her little kid stage whisper 'Mommy, I want to help more". She pulled her little chair up at the head of the table so I could just see her feet from my position lying down. Then she started circling around me, lifting up my feet as her mom told her to do. When this assignment grew boring, she started doing some of her own renegade work, growing increasingly more confident in her skills . I would feel a friendly little poke in my spine, then an earnest jab in my ribs and then an authoritative yank on my foot. Since I couldn't see her, I never knew where she'd be next. When mommy was done, she got her own time helping with "hands on healing"- putting her hands on my head (I think she wanted to take my headscarf off but a quick word from mom and she moved on) and my back, my legs and feet and praying for me silently.

It reminded me of a story I heard about World War I. Pope Benedict XV was one of the few players working towards a peaceful resolution, he was largely ignored by the political players, even considered destructive as his efforts for peace were considered to weaken the spirit of the fighters. He tried to organize the famous Christmas truce, but that failed as well. Whn it seemed like all hope for peace was gone and there was nothing left but to pray for mercy, he called together 10,000 children making their first communion to Saint Peters Square. He begged them to pray for the intercession of Our Lady to end the fighting before even more lives were lost. He died shortly thereafter, never being able to see the fruits of his labor on earth to end the conflict, most likely thinking he died a failure. But in May of 1917, Our Lady made her first appearance at Fatima. To children.

So it would be a grave mistake indeed to discount the prayers of children. I count myself lucky to have had my own little warrior in a pink tutu fighting for me.
Love, Faith

Tuesday, June 3, 2008

Another boring technical post...

Ok, here's the details of my meeting with the genetics counselor...

First of all, my reason for deciding to go the genetic testing route was mainly to glean a bit more information before making decisions about future treatments, namely Tamoxifen. Tamoxifen is a drug that they would put me on after the finish of chemotherapy for 5 years to prevent recurrence of (mainly) the breast cancer, but also to prevent recurrence of any other estrogen receptor cancer in my body. It has serious side effects, though as it works by blocking your bodies ability to absorb estrogen, effectively putting your body into menopause. It also increases your risk of ovarian cancer, which is where the genetic testing comes in.

If I tested positive for one of the 2 known breast cancer mutations, both of those also come with a greatly increased risk of ovarian cancer, about 60% (as well as a slightly increased risk of colon and pancreatic cancer, but those are much lower). At this point, I am planning on having the preventative mastectomy and decreasing my chances of recurrence that way rather than taking the Tamoxifen. I don't fancy the idea of anything that messes so severely with my hormones; also I still want to maintain fertility for as long as possible. And who needs hot flashes at age 33? Sheesh.

According to the genetics counselor, my chances of having the genetic mutation based on my medical background and family history is very low, about 6% that I would test positive. In fact, they were debating whether or not I was even a candidate for the test. In the end, they decided to go ahead with it as I am so young, and also because there have been very few females in the more recent generations on my father side (he comes from a family of 3 boys and his brother had 3 boys and one daughter).

The meeting was fine, although some of the mandatory questions they ask made me want to roll my eyes sometimes. For instance "If you test positive, that will mean it came from one of your parents (duh!)- how will this effect your relationship with that parent? Oh, come on- they gave me my premature gray hair, I think I can cope. But I guess they have to ask these things...

One piece of information that I found interesting was this. They are not testing for a breast cancer gene, as I previously thought. They have located 2 genes which are tumor suppressors; within those genes they have located certain mutations which impair the genes ability to do their job in suppressing tumor growth. Cancer is a two hit process- having the BRCA gene is not in itself enough to cause cancer; there needs to be something that spurs the cells to begin growing rapidly and then you develop cancer when your body can't control the growth. So when someone young comes in with cancer, they immediately suspect a genetic cause- that you already started the game with one hit against you, namely the genetic predisposition.

So the test results can come out negative (I do not have BRCA 1 or 2) positive (I do have one of them) or indeterminate (they found an abnormality on the genes that they do not know the cause of, or whether it means an increased risk of cancer. Not all abnormailities on the genes are bad).

Okay, this concludes another boring technical post.

Monday, June 2, 2008

Simple Post

I had chemo #5 today- yay! The beginning of Taxol, and only 3 treatments left! Trisha came down with me, and my mom and dad were there. We prayed the rosary before the Benadryl kicked in (you really do see stars, by the way, but you don't hear birdies chirping like they do in the cartoons.)

Have much I could tell you about my meeting with the genetic counselor, my new obsession with BBC period movies (not really new, just forgotten and picked up again now that Alias is over) etc. But for now, I'm rather tired so I will tell you briefly about our family trip to the horse races.

I spent $11 total and lost only $7, which made me the big winner in our family. Horse racing was great fun, much more than I would've expected. My standard line- "what's the minimum bet?" Okay, then put me down for $2 for "Daddy's Joy" to place". There were whole picnicking families there, lines of kids at the fence screaming their "picks" on, (even if you don't bet money, it's still fun). Then there were the souls who ostensibly make their living betting on horses- weathered old men with tense looks on their faces, young men with clouded futures before them sitting by themselves and putting their heads in their hands after a disappointing race... it's a mixed bag.

We tried to get my mom to put $2 on a horse of her own choosing, telling her it's good to try new things. Her inarguable response, "I've never spent $5.50 on a beer before, That's enough of a first for today".

Anyway, when I am feeling better maybe I will organize another horse race day. Every Sunday is $1 Family Sunday- $1 to park, $1 admission, and $1 minimum bet. My kind of day.