Halloween, 2012

I was standing in the Halloween candy aisle today deciding what kind of candy to buy on the slight chance any trick or treaters come by tonight. The two little boys down the street are probably the only possibilities. Anyhow, I commented to the gentleman standing beside me also surveying the offerings that I had to be sure to buy something that I like because I sure didn’t want to get stuck with candy that I don’t like but that I wouldn’t be able to resist eating. He laughed, and then several of us shoppers (oldies, all of us) started talking about how we used to celebrate Halloween.

First of all, it was all about kids. I never saw an adult in a costume until I was grown and wore one myself to a Halloween party. And we kids had an incredible amount of freedom to roam—pretty much unsupervised. I remember coming home having covered numerous blocks where almost every house had a porch light on, signifying that treats were to be had there. A lot of running and whooping it up was involved, as I recall. And then when we got home, there was the ritual dumping out of our paper bag, or plastic pumpkin onto the floor and sorting the candy, trading my undesirables with my sister for some I liked better. My mother tried hard to hold the line on how much we ate at one time, but I think she often looked the other way.

Somebody—the elementary school or the city or somebody else—held a Halloween fair at a tiny park near the school. There would be wishing wells and a haunted house (the Boy Scout cabin converted into scaryland) and go-fish booths and balloons and screaming children and harried parents. It was great. Then we’d go around the close-by neighborhood trick-or-treating, and then do the same at the houses on the way home. No one ever got poisoned or cut by a razor in an apple. And we did get apples.

I did get mighty scared once. We walked up to a house where the porch light was on, and just as we started up the dark steps, a man in a scary costume (I think he was in costume, he could have been naked for all I know) stood up suddenly from the front step and waved his arms at us. I came to about two blocks away, finally aware that I was screaming and running for my life. He probably had a good laugh. And I did, too, years later.

So, given that Halloween isn’t what it used to be, I think I’ll just sit in my living room in the dark tonight and wait for the Great Pumpkin.

Rants and raves.

Rants and Raves

October has been Breast Cancer Awareness month, as if I needed a special month to remind me of breast cancer. It was more than five years ago in 2007 that I discovered (and it was soon verified) that I have breast cancer. And not just any old kind, no-oooooo, I'm in the 5% of breast cancer diagnoses which are metastatic from the get-go. Now, at 5 years "out", I'm in the 20% of metastatic breast cancer patients who are still among the living. So that's a good thing, right? Well, yes, but with some caveats. It isn't easy living with Stage 4 metastatic breast cancer.

And before I go on, I have a little rant I want to share with you. Forty thousand women (and 400 men) die each year from breast cancer. And they all had metastatic breast cancer, because you don't die from earlier stages of BC. You die when it spreads to your brain (a favorite place for my kind of cancer) or your lungs or liver or bones (which is where my cancer had spread to when I was diagnosed) or some other less common site.

SO, to get to my rant, if we want to prevent women from DYING of breast cancer, then we need to find a CURE or, barring that, GOOD ways to treat it as a chronic condition so that we can live comfortably. That has happened for a lot of people who have HIV/AIDS if they take their drug "cocktail" faithfully (and have access to it). And they got that cocktail because loads of money and many researchers spent gobs of hours looking for a way to treat that dreadful disease.

 But it hasn't yet happened for folks with metastatic breast cancer. The percent of money spent on research for a cure, or for treatment of advanced cancer, or just treatment for any stage of cancer by the leading non-profit cancer organization (think the Susan Koman Foundation) is tiny--about 7% of income. Lots of money is spent on "administration" (think fancy hotel rooms, big salaries, etc--typical of bigwigs in most big organizations), education of the public (is there anyone left in this country who doesn't know about breast cancer?) and prevention (which means avoiding risk factors, most of which are out of our control, such as age of onset of menses, family history of BC, and others that are not yet proven (use of estrogen-based birth control for younger women or estrogen replacement therapy for older ones) or which are just good health practices (exercise, diet, less stress, etc.) What about looking for some treatments that aren't the traditional BURN (radiation), SLASH (surgery) and POISON (chemotherapy)?

My eyes see red every time another pink product is associated with reducing breast cancer and used to raise funds for a cancer foundation, usually the Komen Foundation. PINK M&M's, for God's sake? I mean, I love M&M's, and I've eaten them, even after having cancer. But I shouldn't. Sugar FEEDS cancer cells. In fact, when you get a PET scan to see if or where you have cancer, they inject you with radiated sugar water and then scan to see where it goes. The HOT spots that show on the scan are cancer cells busily taking up the sugar, much in excess of normal cells. So why would we be encouraging people to eat sugar to fight cancer? Beats me. If I had any money to give to fight cancer, I'd look to those organizations who actually DO give much or most of their money to research, such as the Breast Cancer Research Foundation and the METAvivor Research Foundation.

Well OK, that’s my rant. I've been wanting to get that off my chest.



Back to living five years with metastatic cancer and the caveats. For me, and for most of the women that I personally know with advanced cancer and those who are on online sites for metastatic cancer patients, it's a roller coaster--that's a term often used-- with periods of "stable" condition, almost always accompanied by some drug regimen that has side effects (we'll get to this later), followed by a recurrence and a change in regimen--which could involve different drugs or radiation or more surgery. Then there're the periodic scans and blood tumor markers. Most of us get anxious before these scans/tumor markers, and even though the actual scans are not painful (assuming they get a vein on the first try) they can be nervewracking. And then there's the wait after the scan, from a day to a week, to get the results. And sometimes the results aren't good, so it's hard to assume the best in the waiting period. This sounds so tame in the writing, but it isn't tame at all to actually go through the experience--over and over again.



And then there are the side effects of all the treatments, but especially chemo. The public knows mostly about the terrible nausea and vomiting the earlier drugs caused, but for most of us that is no longer a serious problem. New anti-nausea drugs work pretty well, along with older meds for GI problems and anti-anxiety drugs that also help. But there's an incredibly long list of OTHER side effects that you can get, although luckily most of us only get a few from each drug, not necessarily the same ones as the next person. Things like fatigue so severe that you can hardly force yourself out of bed, or "chemo brain" where you can't seem to keep track of the things you used to do without even thinking, or aches and pains in any part of your body, or losing your hair, including your eyebrows and eyelashes, or developing lymphedema and having to wear compression sleeves, or losing your sense of taste so that everything tastes blah, or even awful, or developing neuropathy--loss of the sense of touch, along with tingling or pain--in your feet and/or fingers, or mouth sores that not only hurt like heck but also prevent you from eating most foods, or diarrhea or constipation (sometimes in the same person from the same drug), or painful swollen fingertips or toes that can lead to loss of the nails, leg cramps or fungal outbreaks and on and on. And these are just the ones that I experience at one time or another. Always there are two or more working at the same time, with fatigue almost always present. I won't bore you with more but you can easily find them on websites about side effects of cancer treatment.



The point is that while the cancer may not be killing you at the moment, the side effects can be making your life miserable. And most metastatic cancer patients I know say that if the balance between side effects (or problems from the cancer itself) and a good quality of life gets shifted too much toward side effects, they insist that the treatment be changed (as I have done twice). And when effective treatments run out, we have no choice anyway.



So gang, so far this must seem like a real downer. So I'll try to end on a more positive note.



Most of us who have metastatic breast cancer, knowing that we are in a terminal condition--could be soon, could be later-- experience the following:

an outpouring of support and love upon diagnosis from friends and relations far and wide, which dwindles over time to a precious few who are always there. We so appreciate both kinds of support.

an enhanced sense of our natural surroundings--the birds, the weather, the temperature, the colors, the sounds, (unfortunately, not the tastes), the mountains (for me), the ocean, the lake, the rain...

an increased tolerance for uncertainty, otherwise we'd be driven crazy by the day-to-day changes in our bodies, the limbo-land we live in before, after, and between scans, and the probability that our life will be cut short.

an improved ability to listen to our bodies when they tell us we need rest, or rejuvenation, or meds to relieve pain, and the ability to respond to our bodies' requests.

a respect for others who have problems in their lives, whatever those problems are

a growing ability to accept what IS, rather than yearning or grieving for what WAS or what CANNOT BE in the future

a desire to help others, especially those in situations similar to our own (in my case, I'm totally invested in the women in my cancer support group that meets weekly.)



So there you have it; a rant and some raves. Life goes on.

Lymphedema treatment in the therapy Pool

Lymphedema Treatment in the Therapy Pool

For a number of weeks now, I’ve been going twice a week to a “therapy pool” at a local rehabilitation center. The pool is 5 feet deep at the deep end, heated to over ninety degrees, and use is restricted to patients who are being taught how to do exercises in the pool for whatever ails them, or members who have completed their “lessons” and are continuing the exercises on their own. No one swims; they just do these invisible exercises underwater.

When I began going to the pool, I had lymphedema in my right arm, hand, and shoulder and also in both feet and legs. Since I’ve completed pool lessons and also manual massage treatments by the therapists, I’ve been coming to the therapy pool on my own for an hour twice a week. Although my hand and arm require a lot more than pool therapy, my feel and legs have returned to normal size with no swelling. So it has been a great thing for me.

There are several “regulars” who come at the same times that I do. One is a very nice woman who was a teacher of nurses and medical students before she retired and before she developed lymphedema. Unlike me, whose lymphedema was triggered first by surgery, and then aggravated by radiation treatments, she knows of no obvious cause for her swelling.

And what swelling she has. Her legs look like she has elephantiasis, which if you haven’t heard of before, you can figure out what it looks like just from the name. Her arms look like bat wings when she raises them up. Her skin slides down over her ankles and knees and her wrists and elbows. And she says that so far she’s lost 85 POUNDS of fluid. So imagine what it was like before. Plus her skin, being so stretched, is red and raw in spots. Altogether it makes me want to cry for her.

But she’s such a positive soul. She loves the pool therapy because it feels so good to her—takes the weight off her legs and feet. She brings a tiny music player and does a version of tai chi in the water in addition to other exercises. I look at her in amazement and wonder how I could ever feel sorry for myself for having to deal with this condition. No one stares at my legs because they are so gigantic. Usually no one even notices my arm and hand, and if they do, it’s not the size, it’s the compression garments I wear that get their attention. And my skin doesn’t have any problems.
Yes, there’s always someone in worse shape than I am. And that helps to put my life into a better perspective.