Supplemental thoughts

My apologies. I said I wasn't going to write about cancer today, but I sort of am anyway. Next time: Dogs! I promise! Or maybe the Astaires.

So...you know how every even marginally reputable article or Web site about supplements, vitamins, etc. always contains some sort of statement like "Talk to your doctor before taking any supplements"? How many people actually do this, I wonder?

I'm thinking about this today because of curcumin. Curcumin, also known as turmeric, has long been looked at - unfortunately, not usually scientifically - as a possible cancer preventative/cure. There have been some actual scientific studies recently which have tried to look at curcumin's effect on different types of cancers, either alone or in combination with certain drugs. But so far, the results have mostly been inconclusive. Were I to ask my doctor about this, he'd probably say "It won't hurt you - but it may not help you, either. And there's no clear protocol for how much you'd need to take for it to possibly help you. There are many conventional drug treatments out there now which we know work against your disease; we can talk about which ones might be best for you."

I'm a good girl, I am

My father was a doctor; he raised us to trust in licensed medical practitioners, never chiropractors or "healers" or even optometrists. We took a Flintstones vitamin every day and that was about it.

A lot of that has stayed with me. I'm not comfortable with going outside the box when it comes to medical care. I want to trust that my doctor has read up on all of this stuff and will tell me when and if he thinks I should add something like curcumin to my regimen.

But what if I'm wrong?

I need more data

After all, my childhood pediatrician believed in St. Joseph's chewable aspirin for kids with fevers, and look what happened there. Things change. It could be that science is just slow in catching up, that this stuff (or green tea, or any of the other remedies you can read about on the Web) really does work. And what harm could it do? People have been eating turmeric for thousands of years.

Of course, some of those people got cancer. So...

Maybe it has to do with the amount. How much is really needed? Or the method of taking it - it's not water soluble, so you have to take it with fat. But what kind? Flaxseed oil? Fish oil? Chocolate ganache? And how often?

Here we get into dangerous math territory

Then there's the cost. 8 grams a day seems to be the current "advised" dosage, that is, if you believe the blogs. That's quite a lot - 8,000 mg. The largest dose per pill is 1,000 mg, so you'd need to take 8 per day, which would work out to one 120-pill, $45 bottle every two weeks. That's almost $100 per month. Is it worth it?

What if I do go on some other drug regimen, one that's covered under my health plan? These drugs can cost $6,000 a month or more. That's probably not going to be covered by a $20 co-pay. I might need that $100.

There's another thing, too. Adding non-FDA-approved supplements to my diet would be really...not me. I'd start to feel as though cancer were changing me into someone else, someone who tries "alternative therapies," someone who maybe doesn't trust modern medicine. Someone who might fly to Mexico next for some weird treatment. Someone who's scared. I don't want to be that person.

So for now, I'm going to save my $100 per month. Or maybe I'll buy a ticket and see "Pippin". That would be me all over.

"Fight Like a Girl" - or not

Here's the part of the blog where I'm sure I'll manage to offend some of the few readers I've managed to attract so far. Well, best to do it early before even more are annoyed, right?

I really hate stuff like this:

And no, it's not because women (NOT GIRLS) with breast cancer get sparkly water bottles and pink T-shirts and hats, and I with my blood cancer that no one's heard of, do not. I am not envious. I think those who know me would agree en masse that I would never wear anything like this, should I be - er- qualified. But why? Isn't it just a cute, fun way to ...uh, to what, exactly?

That's the problem. What is the point of this kind of thing?

I get the play on words, I guess. "Fight like a girl" usually  means to fight ineffectively, but these items are saying "You're a girl (UGH) with breast cancer, so go and fight it like the strong girl (UGH) you are."

I think you can probably see what's annoying me here. Well, one of the things. Women with breast cancer are not girls. They don't, normally, have the same kind of obsession with pink that I did when I was nine. Why are we treating them as if they had somehow regressed back to childhood? Why, in a situation in which one has to muster all of the maturity and wisdom one's gained over the years, are women thrust into a world where they're asked to don pink, sparkly things and call themselves (and, alas, their breasts) "girls"?*

And don't get me started on "Save the Tatas." Yes, this exists.

I find it very interesting that this kind of thing has evolved around breast cancer, and not any of the other types of cancers that women can get. I certainly have no option to purchase sparkly water bottles or pink hats. I think my type of cancer, multiple myeloma, does in fact have a "ribbon color." I suppose if I wore one of these maroon ribbons, some people would ask me why it wasn't pink, and I could explain about the disease and raise "awareness". But do I really want to be talking about cancer while I'm out at Wegmans, trying to decide between the pumpkin and the coffee cake muffins? Couldn't I just give money to the MMRF , and ask others to do so in forums like this blog? (See how I sneaked that in?)

But let's delve into this a bit further, shall we, those of us that are left?

Let's talk about the "fight."

I recently had a long talk with a good friend about this - a friend who had recently been diagnosed with cancer. He mentioned that various people had told him that he had to "fight" his cancer; that he was now in a "battle" for his health.

He was already exhausted from all of the treatments and doctor's visits and stress. He didn't want to "fight." But he wondered if he was endangering his health if he didn't. Was he "giving up"?

I've gotten this, too. I'm sure many, many people with cancer have. You read it in practically every obituary of someone who's died of cancer. "She died after a long battle with..." "She lost her fight with..."

I understand that for some people, all this battle imagery is helpful. But for me...and for, I suspect, some others - it's not. It's just one more darn thing, like being told to "stay positive" when all you want to do is stay in bed and imagine your funeral and what songs will be played there (please, please, not "Seasons in the Sun.")

Here's what I think. I need to listen to my doctors, to read up on my disease, to look at new treatments and clinical trials and drugs in the pipeline. I need to get second opinions if necessary. I need to do whatever is within my power as a rational adult to deal with this disease, or any other disease that may decide to visit.

What I don't want to do, though, is feel as though I'm engaged in a constant battle, that every day is another skirmish between me and disease, that if I let down my guard and stop "fighting," I'll get sicker.

 Back to the shirts and water bottles and hats. What happens if someone gets one of these things and, well, just doesn't feel like fighting that day? Does the guilt set in? "I'm not fighting hard enough! I'm not battling! The cancer will win!"

I think that sometimes it's OK to not fight. It doesn't mean, necessarily, that the cancer will "win". It might. It might because, unfortunately, cancer is a horrible disease that we haven't, for the most part, figured out how to cure. But if it does "win," it's not your fault - even if you didn't wear the pink. Or maroon.

PS: I promise that I won't talk about cancer in tomorrow's blog. But I might talk about atheism. Forewarned is forearmed!

*(Peggy Orenstein wrote about this in much more detail, and far better than I can, in a recent New York Times article.)

Cancer loves sugar, and other dubious truths

Let's talk about sugar. And tea. And curcumin. And water. And...oh, just about everything else that might keep cancer at bay...or might not.

Before I got cancer, I'd say I had a fairly healthy diet. I mean, like many people my age I was carrying around about 10 extra pounds that had visited during the childbearing years and had decided to stay. Every so often I would experience a burst of motivation (usually around January 1st - what a surprise!) and re-join Weight Watchers, start another exercise program, etc., etc. But my general health was very good, I drank my milk, ate my yogurt and fruits and vegetables and salads. I tried to stay away from bacon and processed lunch meats and fried foods and really horrible things like the onion blossom at Outback Steakhouse. Almost every morning I'd have a healthy breakfast of bran flakes and fruit, or oatmeal, or something like that.

Then I got cancer. And when some people heard this, I started to get advice like "Cancer loves sugar. You must cut all sugar out of your diet." And "You must filter your water. Never drink water straight from the tap." And "You must start drinking green tea. But it has to be a certain kind. And we can't really tell you how much to drink, but just to be safe, start with eight cups a day." Eight cups a day? You'd never see me again. I'd be permanently in the bathroom.

Then there are the proponents of turmeric, or curcumin. There are some well-regarded cancer specialists looking at a possible link between consumption of this substance and its ability to prevent or treat cancer. Right now, there's no hard scientific evidence. But lots and lots of people out there are taking curcumin supplements and swear it is helping them. Should I start? How much should I take? In what form? What is it going to cost me? Will it do any harm? How about if I just throw some turmeric into my next pot of lentil soup?

Oh, and let's not forget broccoli. We all know that cruciferous vegetables are definitely good for you. But I ate broccoli quite often pre-cancer, and I got sick anyway. Did I not eat enough? Should I have eaten it raw, not cooked? Fresh, not frozen? I know a woman with my type of cancer who is eating about half a head of broccoli a day. She has broccoli soup for every lunch. That's a lot of broccoli.

Now, some folks, faced with this tide of conflicting information, might go in another direction, throwing their hands in the air and saying "The horse has left the barn. Bring on the Twinkies." Why bother trying to eat an anti-cancer diet when you've already gotten cancer?

Well, the thing is, I got one type of cancer, and beat it back, and I'm very much hoping to keep it under control for a long time. I don't like to think about it, but there are lots of other types of cancer out there, and I, like anyone else, could get one of those, too. Unfortunately, the universe doesn't always decide that giving you one type of cancer is enough for you to deal with and it will give you a pass on any others. So it makes sense to try to keep my eating as healthy as I can, going on the reasonable assumption that if I'm generally healthy, I'm better able to fight infections, illnesses...maybe even cancer.

But I do wonder - what is enough? When does the healthy eating start to take over your life? I don't want to spend all day drinking tea or eating broccoli. I try to limit sugar, but then again, dark chocolate is supposed to be good - in moderation. No sugar at all? Now we're getting into dangerous territory. I know there are lots of other things that make life worth living besides sugar. I'm willing to avoid processed junk, gooey desserts (never liked them much, anyway) and almost all types of candy. But for now, anyway, the Trader Joe's dark chocolate is staying,

Still breathing

I started this blog just after I'd received my cancer diagnosis...and then let it go. Somehow, all I could do was to focus on the main task at hand - following the doctors' orders, keeping all of the appointments straight, going through treatment while still trying to maintain some semblance of a normal life.

I've gone through my initial treatment, and I'm in remission. Things are quite a bit calmer, and there are days - especially when I'm on vacation, away from the regular routine - when I almost forget I had cancer. At least for a while. The thing is, this type of cancer can - and most likely will - try to come back. Fortunately, thanks to the efforts of lots of research, I have many more options than I would have 15 or 20 years ago. So for now, I go to see the doctor monthly, I have blood tests, we watch the numbers. If they start to creep up, we'll catch it very early.

Now it's almost three years later, and I feel the need to write again. But what? I don't want to write a "cancer blog." As I said to a friend recently, I don't want the rest of my life to be all about how I "fought" cancer. I know that having cancer has changed me in some ways, and will certainly change my future. But in many ways, I'm the same person I always was. I still like to read and go to the theater; I still love my family and my dog. I like to travel and I like to stay home; I like to watch movies and PBS and, sometimes, mindless reality shows (not, I hasten to add, as mindless as "Honey Boo Boo." More like "Project Runway.") I enjoy my work and hope to continue doing it.

So while I'm sure that some of my Blog Posts Of The Future will talk about cancer, not all of them will. Let's see what happens.

Just Breathe

I've been saying (or singing) this a lot to myself over the past week. "Just breathe." It's a line from one of my favorite musicals, "In the Heights." Of course, in that show, Nina's only dealing with the problem of how to tell her parents that she's dropped out of Stanford. I have a little bit more to deal with at the moment.

It was about a week ago (December 3rd) that Owen and I sat in my doctor's office and got the results of all of the blood work and CT scan he'd ordered a couple of days previously. This was the culmination of two months' worth of escalating problems with my right arm and shoulder: first slight discomfort, then a bit more pain, then a month of physical therapy which seemed to make matters worse, then a visit to an orthopedist who gave me a cortisone shot. A week or so after that, I tripped coming down the stairs and wrenched the already-weak arm badly grabbing onto the railing, with the outcome being extreme pain and no ability to move the arm from my side at all. Then followed an MRI and CT scan which suddenly revealed (in addition to a fractured scapula) suspicious lesions on several bones. That was the first time I heard the word "myeloma" in connection with myself. It still seems surreal. I went from thinking "Oh, I slept in a weird position and probably strained my arm" to "I have cancer."

Several people have said to me, "Well, in a way it's good that you fell on the stairs--otherwise your condition might not have been discovered for much longer." I guess that is true. But it's hard to realize that those days of blissful ignorance are probably gone forever. Every morning now, I wake up with the realization that there's something seriously wrong inside my body, that my bones are full of lesions, that my blood is out of whack. I'm going from being the kind of person who visited the doctor maybe a few times a year to facing weeks, months, years of appointments and tests. I've always thought of myself as a very healthy person who barely even took painkillers. Now I'm looking at radiation, chemotherapy with seriously harsh drugs, and who knows what else. I know that I need to be grateful that these therapies exist to help me. But I guess one of my biggest fears right now is what the treatment will do to me. I hate the thought of being weak, of being incapacitated, of not being able to take care of everyone else the way I always have. As they sing in "Rent": "Will I lose my dignity?" I already have to be so careful of falling that I can't walk the dog (too much snow and ice) or navigate wintry parking lots on my own. I feel like a little old lady.


I'm getting lots of suggestions for ways to distract myself, fun things to do to pass the time. They're all great, but I can't focus very well on anything right now except what the next doctor's visit will bring. I hate that I'm living this way. I know that each moment now is more precious than ever. But I never did subscribe to that often-repeated idea, "Live each day as if it were your last." Who can really live like that? Life is really made up of the wonderful, everyday routines, the coffee in the morning, walking the dog, nagging the kid about homework, thinking about what to make for dinner, dusting, doing laundry, working. I want to get those moments back. I want to get those days back when it seems that nothing very important happens, but it was still a good day. That's what I'm hoping for.