Friday, November 26, 2010

Prevention v. Treatment

I take issue with the cancer narrative in this country. Funding, research and the entirety of the national focus seems to be on treatment and survivorship rather than prevention. I believe that is a serious and dangerous problem.

With no offense intended at those cancer patients and their supporters who feel empowered by pink ribbons and yogurt lids, marches and walks, it's just not my jam. I bristle at the slogan-y, soundbite-y nature of the cancer world, and shudder when I see advertisements for what feel to me like the cancer survivorship cottage industry that's not benefiting anyone but corporations. I've been giving why I feel that way a great deal of thought, during the recent weeks.

I have become very interested in the prevention side of cancer for explicitly self-interested reasons. I am trying to slow the growth of my own cancer in order to buy myself more time on this earth: it doesn't get more self-interested that that. But I also have been in a distinct cancer-oriented mindset for the past few years, and it has shaped my world view. Much of this view is coming from the gaze of a person who has this disease, but doesn't know where it comes from. Having a type of cancer with an unknown point of origin deeply impacts my orientation: I seek causes everywhere, in everything. The sources of cancer are ever-present for me, and therefore, my cancer experience is inevitably oriented toward understanding how cancer can be prevented. My view of this situation is also colored by my perception, based on anecdotal and personal experience, backed up by national statistics, that rates of cancer diagnoses are continuing to climb in every single population. It seems logical that the causes are, at least partially, man-made.

I can understand how treating a problem is easier than preventing one. For an individual and collective, a diagnosis is concrete; having a poster child in the form of someone you know, or someone you can relate to, galvanizes. But this treatment-orientation feels more nefarious when I think about all the ways that it is entrenched by the approach of corporations and our country's medical system (and the two are linked, and even interchangeable in terrifying ways, which really warrants it's own post another time).

To me, the heart of the issue is this: the same corporations that give donations to research a cure for cancer, are causing it, by putting hormones in their yogurt, stain-blocking chemicals on their clothing, carcinogenic ingredients in their beauty products, and saturated fats in their foods. I have come to see clearly that causing the problem, then profiting off of your commitment to contribute to solving the problem (it's well documented that people are more likely to buy a product with the pink ribbon on it) is a terrible joke being played on all of us consumers, and a lethal atrocity being committed against people with cancer.

Even worse than corporate America using suvivorship to profit, I believe that not only does our modern health care system not focus on prevention, it even perpetuates the causes of illness. There have been countless times when I have been told that "there's nothing I can do" during treatment to help spur my healing process, when of course, there are myriad options for helping to slow cancer growth and foster healing in the form of herbs, vitamins, nutrition, specific exercises and therapies, etc. And ways to counter-balance toxic therapies administered for cancer that are not a part of any standard treatment protocol. I have had to seek all of these out on my own. They are not a part of any of the three teaching hospital-associated "comprehensive" cancer clinics I have been treated at. Treatment, with zero attention paid to prevention. And then there are the more blatant ways cancer is made worse by western medical treatment.

Recently, at Georgetown University Hospital, I was laying in bed on day three of my four-day treatment cycle, I was interrupted by guy who identified himself as a tech with a Geiger counter-ish device, measuring something outside of, then in my room. He explained that a woman in the room above mine was getting radiation therapy and they were checking "for the sake of appeasing the regulators" for any leakage, just as a precaution. Well there was leaking radiation, it turned out, detected less than a foot from my head. I immediately asked to change rooms, and expressed my deep upset at being exposed to additional toxicity during treatment. While the appropriate response - moving me and my belongings - was immediately taken, I just couldn't quite get anyone to really hear my concern: that I am a patient with an unknown cancer source, being exposed to an unnecessary amount of toxicity while specifically being here for treatment for the very thing that they were causing/perpetuating with an improper facility that allowed radiation leakage. This disappointing (shocking, even) situation speaks to the lens through which our western medical culture views cancer. Cancer is an illness treated with a complex and costly system. There's not even a percentage of this energy and money devoted to prevention.

Before becoming sick, I never really thought about all of the habits in my life that may have contributed to feeding cancer cells in my body. Microwaving plastic, eating pesticides on fruits and vegetables, inhaling paint fumes, consuming growth hormones in dairy and meat, taking medications and using beauty products without researching their carcinogenic effects, cleaning my home with harmful chemicals, sitting too close to TV and computer screens, not using headsets with cell phones, resting my laptop on my lap: and a million other small and large habits that may or may not have resulted in my or anyone else's cancer.

I have come to see carcinogens the way that John Nash sees numbers - in everything, and everywhere, and sometimes irrationally. While I accept that I am never going to find the magic ingredient to preventing or curing my own disease, I feel that I owe it to myself and the people I love who aren't sick, to try to be a conscious consumer in every way, and avoid financially or socially contributing to this terrifying cycle.

I am hopeful that the causes of cancer will receive more focus in the future. I'm seeing that for the first time in Washington, bills addressing food safety and the ingredients in cosmetics are gaining some traction. Organizations like Mom's Rising are waging full-fledged campaigns on product safety, and the slow, organic and local food movements are growing.

Is this the only reason why I take issue with the cancer culture and language of survivorship in this country? No. Some of it stems from my discomfort in the language of victimization and my own mishugas with owning cancer as a part of my identity, for better and mostly worse. But it's my strong hope that as I continue to define what having this disease means to me, I will be able to use the soapbox given to cancer patients and survivors in our culture to shed more light on the ways that we can all try to prevent cancer, for ourselves and for each other.

Monday, November 22, 2010

SGN 35

I had scans last week to see how my most recent cycles of chemotherapy had worked, and they were basically static. There had been two spots with small nodes that are cancerous on the last scan - one in my chest, one near my liver - that had shrunk just the tiniest amount after my most recent cycle of chemotherapy. But, everything looks about the same.

It's disappointing, but not shocking. I am sad, but I was significantly more panicky when I didn't yet know, and was waiting for information. I feel better now that there's some semblance of a plan.

I spoke with my oncologist in Chicago, and we advanced a conversation we had already begun about the options in the event of this type of result. One choice was to proceed directly to the transplant, but ideally, I would be in a complete remission going in, in order to minimize the disease burden on the donor cells. So my doctor has suggested a "bridge" to the transplant, in the form of one more cycle of therapy: a brand new drug called
SGN 35.

SGN 35 is an antibody that attacks only the unique Hodgkin's cells. This means that it is minimally toxic to the rest of my body, and that it will not be an aggressive therapy. It's administered once every three weeks, and in theory, I should feel very well between treatments.

It's so new that it's not yet FDA approved because trials are just concluding. But my oncologist has gotten permission for me to get the therapy on what's known as "a compassionate use" basis. The drug is administered one time every three weeks. I will have a minimum of three doses, depending on how well it works. It will be administered in Chicago, but if all goes as planned, I will be able to go back and forth between Chicago and DC and continue more-or-less as normal. Here's some
additional information about how the drug works from a blog that includes some helpful links. I've also found a press release announcing a paper and presentation on the drug which I think puts things into easily-understood terms.

So it looks like my plan has changed again, and the transplant has been delayed again. I am wrapping my head around it all, but truthfully, I am mainly experiencing relief to 1) have a plan again - even if it's just for the short term and 2) have a couple of months when I'll, at least theoretically, feel better. I've spent the last months feeling sick, trying to simultaneously function normally, and cope with only being able to plan for a week in advance. Few things frustrate me more.

Seems safe to say that for at least the next 10 weeks, I will be coming to Chicago every three weeks for the treatment. I am hopeful that I will be able to start this regiment soon, perhaps even while I'm home for Thanksgiving. As soon as everything is set, I will let you know. I'm deeply looking forward to getting some time at home and give thanks for everything I have to be grateful for.

Wednesday, November 3, 2010

Test Results

I'm glad to report that following cycle 3 of IVEG chemotherapy, I am feeling pretty well and back at work and life. I'm also busy trying to make plans for the next steps. After cycle 2 of IVEG, I repeated PET/CT scans, the only measure of treatment success or failure with Hodgkin's treatment. My tests showed that there is significant improvement (a partial remission) but not complete success. As we move toward the goal of beginning the transplant, we are planning to repeat the tests in a couple of weeks, hoping that cycle 3 results in more progress. Depending on those results, we'll either make plans to proceed to the transplant (the exact date is of course, dependent on the donor's availability) or do some additional short course of therapy before the transplant. While it's anxiety-inducing to not yet have firm plans, (anxiety further fueled by the election results) I am hopeful that those plans will come together in the coming weeks.