Archive for January, 2013

posted by Amy on Jan 18

I get a CT scan every 8 weeks. I just had one this Monday, and on Wednesday I learned that I am “NED,” which stands for “no evidence of disease.” That’s fantastic news, of course, and I’m thrilled, but, nevertheless, I know how this ends. I’m going to die. I’m 100% certain of that. Furthermore, barring some other bad luck or a miracle, I’ll die of breast cancer. The only question is when.

The goal with treating metastatic cancer is to control the cancer while maintaining as much quality of life as possible. I have absolutely no complaints about how well that’s working for me. Treatments and monitoring aren’t too onerous. I take four big pills every night, and I go in every three weeks for an infusion and every four weeks for a check-in with the doctor. I can do everything I want to do–study, read, think, knit, cook, converse, run, walk, write, sleep, eat, etc.  And I’m NED. I’m walking evidence of the miracle of modern cancer treatment; Exhibit A for “cancer can be a chronic condition.” My treatments target the cancer and have only minor effects on the other cells in my body. I look and feel healthy and vigorous.

Yet, for most people with stage iv breast cancer, periods of stability are punctuated by inexorable disease progression. The cancer evolves to outsmart the treatment. Researchers are continually exploring new ways to respond, new pathways to disrupt, innovative ways to reprogram errant genes. Treatment planning is like a chess game. Oncologists think in terms of how today’s treatment plan affects future possibilities. The end game can involve trying new combinations of drugs that have quit working in the past. This can go on for many years, but most of the time the cancer eventually wins. Only about 2% of people with stage iv breast cancer escape the gravitational pull of the disease. The rest of us crash and burn.

This was brought home to me in support group Monday. A member I had never met before came in with a portable oxygen tank. Her cancer is growing in her lungs, and she is down to one of the last possible treatments. She’s been at it for ten years, getting onto clinical trials one by one. Most recently she was getting TDM-1, the latest “smart drug” for HER-2 positive cancer. It may have helped for a time, but it quit working. In my online group that’s a familiar story. People keep dying from this disease.

That’s what’s in the back of my mind when people celebrate NED with me. I don’t want to rain on anybody’s parade, and I don’t want to seem like an ingrate, so I don’t say anything, but I also don’t want anyone to be surprised when, eventually, they find out I succumbed to it. It’s not important to set the record straight about my cancer this week, or this month, or even this year. What is important is for everyone to remember that we’re all in the same boat. Nobody is exempt from mortality, no matter how much we try to hide it or gloss it over. We can say people “passed away,” which is a particularly ridiculous euphemism in the case of violent deaths, but they’re still dead.

That means that this is not a dress rehearsal. Minute by minute, inexorably, time is ticking away and whatever is happening, whatever we choose to do about it, is setting the stage for what comes next. The goal is not racking up a certain number of days for their own sake. There’s no prize for longevity in and of itself. The goal, the aim, is a life well lived.

What does that mean? To me it means constant development and evolution. I want to learn something every day. I want to laugh every day. I want to be swept away by beauty every day. I want to love and be loved, to make the world a better, kinder place for someone every day. I want to play and dance and sing. I want to write and study. And I hope I never forget that this is all a gift that I didn’t do anything to cause. Today, right now, nothing bad is happening. I have everything I need. I am happy.

posted by Amy on Jan 13

Better-Butter is the invention of the authors of The New Laurel’s Kitchen, the classic vegetarian cookbook and nutrition reference that everyone, including omnivores, should have. According to the authors, the recipe for Better-Butter “is surely one of the most popular of all our recipes.” (p. 93)

I’ve become convinced that some kinds of saturated fats are actually healthful. (Yes to naturally saturated and monounsaturated fats, no to transfats.) I’ve also learned that butter from grass-fed cows has Omega-3 fatty acids and CLA (conjugated linoleic acid), which are also good for you. I have devised a modification of the Better-Butter recipe that incorporates these insights, plus it spreads better and tastes more buttery than the original recipe.

Here’s how:

Put into a food processor:

1 cup canola oil, 1 cup coconut oil, 1 cup soft salted butter (grass-fed, if you can find it), 3 tablespoons cream, 3 tablespoons non-instant nonfat dry milk, 3 tablespoons Greek yogurt.

Start blending, and drizzle in 2 teaspoons lecithin while it’s running. When it’s all mixed up, taste it, and add a little salt if you think it needs it.

Pour into covered containers and store in the refrigerator. Yields a little over 3 cups.

posted by Amy on Jan 10

Wall Street has recovered from the crash of 2009. It didn’t even pay much of a penalty for bringing the world’s economies to the brink of collapse. Main Street is having a tougher time of it. Unemployment and underemployment remain high, and more and more pundits accept this as inevitable. Diversion of potential or real tax revenue from programs that promote the common good (infrastructure, education, health, etc.) to moneyed special interests (military, extractive industries, privatization of formerly public functions, etc.) proceeds apace.

Ever since the creation of the meme that “government is the problem,” it’s been getting harder and harder to fund equality of economic opportunity with federal tax policy. The “new Democrats” keep offering up Social Security, Medicare, and Medicaid as part of a “grand bargain”that will swap more suffering, despair and premature death of real human beings for “certainty” for the investors who claim they play an indispensable role in funding the economy. However, more and more, there is a divide between the “real economy” that provides goods and services that people actually need and the giant casino that is Wall Street. As long as Wall Street is in charge of tax and fiscal policy, it will be shaped to advance the interests of the few rich, not those of the rest of us.

I have not given up hope that federal tax policy can become more just and equitable than it is now, but I’ve also started paying attention to things that ordinary people can do to quit enabling casino capitalism. Occupy Wall Street and others have made some suggestions: move your money to a credit union, buy locally produced food and other goods, and engage in various sharing activities and cooperatives, such as making micro-loans or pooling resources. For an excellent summary of some of these ideas, read this article. For a clear, cogent, thoughtful, detailed, and thought-provoking book on alternative ways of creating, managing, and sharing wealth, I recommend America Beyond Capitalism by University of Maryland professor Gar Alperovitz. (There’s a link to his website here.) Finally, for accessible, accurate, and inspirational articles about the New Economy, subscribe to Yes! Magazine. (Here’s the website.)

I have something to add to the discussion. Take some of your retirement money and invest it in main street. I will explain why and how this is possible, but please don’t take it as investment or legal advice from me. I’m a theologian who has basically taken a vow of poverty. I’m not licensed to practice law anymore, and I was never a licensed real estate or securities broker.

With that disclaimer, here’s the explanation: If you have an individual retirement account, you probably have it invested in mutual funds. If you are still working and it’s a company 401(k), this idea does not apply to you, because your company’s investment advisor has chosen what you can buy with your contributions. Retirement plan managers are allowed to limit what participants can buy under the plan. But the IRS rules are actually quite expansive and generous. Under the law, your IRA can own almost any kind of financial asset except insurance and collectibles.

That means it can own promissory notes, stock in private companies, real estate, tax liens, gold bullion, some kinds of US coins (not coin collections), and other things. There are very detailed, very important rules prohibiting self-dealing, for the investor and his or her family members, and you can’t buy things for present or future personal use. Making a disqualifying investment can destroy the tax benefits of the entire account, forcing you to recognize (and pay tax on) the income, and maybe incurring a penalty, so don’t take this lightly. There has to be a qualified IRA custodian who is unrelated to you and who operates independently of you and your family.

How this works is you set up a limited liability company to own some or all of your IRA assets, making yourself the manager of the company. The IRA Custodian owns the company. The company owns assets that you, as the manager, choose to have the LLC buy or sell. The custodian owns the LLC but is otherwise passive. Such custodians exist. I’ve looked at some of their fee schedules, and they are not prohibitively expensive. The LLC may own any asset that an IRA is allowed to own. The LLC can have diverse investments. Some of it could be in mutual funds, some of it could be cash in a bank account, and some of it could be “nontraditional” assets. You, as the manager of the LLC, make the investment decisions.

These nontraditional assets could include making loans to start-up businesses or buying shares in them. You could buy foreclosed homes and rent them back to the owners.* You can buy publicly traded stock in companies that you like, not just mutual fund shares. You might want to invest in the new benefit corporations (this website describes them well.) Or you might want to make microloans or provide financing for cooperative housing, small farms, cottage industries, or the like. If you don’t know how to evaluate these things, either get some help or only put up amounts that you can afford to lose (or both). You also have to be sure to address the mandatory distribution requirements that kick in when you reach age 70 1/2. I don’t know how nontraditional assets are valued for purposes of calculating the distributions. I’m not an accountant either.

There’s a very large amount of capital tied up in individual retirement accounts and small business accounts. Some of it could be helping build a democratic, local, sustainable new economy. Perhaps a co-op will form to pool the legal, accounting, and business resources necessary to make this idea take off and to give people a convenient way to invest IRA money in main street and not Wall Street.

*[Do not get involved in any real-estate-related investment without competent legal and tax counsel. Many of the tax advantages of owning real estate are unavailable to an IRA, and you need to consider that in evaluating the investment. The IRA can get a mortgage to fund the investment, but the mortgage has to be nonrecourse (i.e., you may not have any personal liability on the debt.) If you buy and lease back a foreclosed property, you could very well run into problems with “clogging the equity of redemption.” This is not a do-it-yourself project.]



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