Monday, July 22, 2013

The Pink Ribbon Stuff.

Terri found this thought-provoking article on breast cancer in the NY Times back in April: Our Feel-Good War on Breast Cancer. I read it and thought about it all and couldn't really bring myself to talk about it then. It's a long article and seems well-researched, and it brought up all sorts of issues for me. One of the things the article discusses is that insurance approval and funding for early mammogram screening has been cut back, and how that has caused some furor and finger pointing. Will fewer mammograms in the future for younger women lead to a decrease in early detection, and a higher rate of deaths due to breast cancer? Whether the concern is founded or not, it brings up legitimate fears among people that we will miss some cases that might have been caught early.

What's early enough? Mine was caught early, but whether it was early enough remains to be seen; as several women have said, you only know that when you find out that something else is going to kill you. Gallows humor. I think that mammograms are very important for women who have gone through pregnancy, because of all the vast changes a woman's body goes through. Some of those changes in cell structure and function are so similar in some ways to the way cancer cells can morph and change. It seems likely that some of those cellular changes can go wonky at that point or remain morphogenic and can lead to future cancer cells proliferating in the parts of a woman's body most affected by pregnancy, such as the breasts. Breastfeeding causes enormous changes in the breast tissues. Nobody seems to talk much about that aspect, or to feel that a major bodily change like having a baby is as important a change as advancing age in a woman's body. You hear about statistics tallying up cases of breast cancer correlated with age, but not with whether a woman has been pregnant.
One of the questions being asked is whether mammograms are even very useful for early detection. My mother's breast cancer was picked up by a mammogram; she ended up having a mastectomy and she considers that the mammogram at that crucial point very probably saved her life. She was in her early 60's at that point.
I should pause here and warn that I'm going to get blunt and graphic with medical descriptions, so if you're squeamish you may want to go elsewhere at this point.

I've had mammograms, but I've had very mixed luck with them. A mammogram detected a suspicious lump on my left side and based on that, a lumpectomy was performed. It was a painful procedure and left me with a significant scar on that side. No cancer cells were found, so in that sense I was very probably one of those women the article talks about as having an unnecessary procedure based on a mammogram. Was it justified based on the risk that the suspicious lump might have gone rogue at some point in the future? It's hard to know, really. I kept doing mammograms just in case, but they didn't reveal anything more, except that I had a lot of lumps of dense tissue which could have been suspicious and annoyed the mammogram techs no end, but probably were nothing to worry about.

A couple of years later, I developed an infected cyst on my right side. I had a rather clueless friend at the time make a joke about having a zit, not understanding that it was actually very serious, and I didn't even bother to explain; it was too painful and humiliating, really, especially given her underlying assumption that I was whinging about a very silly, minor thing. The infection was probably in a milk duct, deep inside the tissue. It was painful and potentially dangerous in that the infection eventually would have spread to my entire system, and at that point it would have overwhelmed my immune system. Nothing the doctor tried got rid of it, including painful procedures with large needles to try to drain it. Eventually it led to surgery to 'clean it all out' and a tissue sample was taken as part of that surgical procedure. The tissue sample was sent to the lab and revealed cancerous cells after the surgery was done.
I went though a barbaric healing period after the surgery. I hesitate to go into this; I don't talk about it much. It involved twice daily changing of gauze dressings which were forcibly pushed and packed 4 or 5 inches inside my breast, in up against my chest wall, very deep within the breast tissue. The dressings were then pulled out and replaced with fresh gauze, to let the wound heal slowly 'from the inside out'. I needed help to change the dressings for several months, as it's very hard to properly do such a thing to your own chest when it goes that deep, at that particular angle.

 At first we went to the surgeon's office for the dressing changes, then he taught Paul to do it, and eventually, much later on, I was able to do it for myself. It became a rather nightmarish routine to be endured, rolling up a hand towel, clamping it between my teeth, and not screaming when Paul had to change the dressings. I remember growling instead. We did this behind closed doors and tried our best not to let the boys hear what was going on, since they were preschool age at the time. The fact that Paul had to do this for me, and we were enduring the whole harrowing experience along with all of the fears attached to that dread 'cancer' aspect, certainly taught us about some of the 'for worse' aspects of being married. This twice daily packing process went on for three months, while the wound gradually healed to shallower depths until I was finally ultimately left with a permanent large dent, a lurid permanently red-streaked scar and significant, painful scar tissue extending deep inside what was left of that breast. It's not pretty, and it never will be.
After the healing process I then went though radiation for 6 weeks, and the radiation probably was the cause of damage to my kidney function; fortunately my kidneys did gradually recover over time. I also went on Tamoxifen for 5 years, a drug which may help prevent recurrence of breast cancer. For me, Tamoxifen left me perpetually exhausted and drained, and I was told by my oncologist that I was tolerating the drug very well. Thankfully, I'm off of the drug now, and I did notice that the perpetual tiredness retreated. A lot.

I am supposed to go for bi-annual mammograms and MRI's. Every time I go for a mammogram they tell me irritably that they can't see through all the scar tissue and they try changing the angles, compressing the machine further to squish all the scar tissue flatter, take more pictures, and finally they give up and resort to an ultrasound like they use on pregnant ladies, because the mammogram cannot distinguish what might be dangerous lumps through all the other dense lumps of scar tissue I carry around with me. I have lost all faith in a mammogram's power to detect anything meaningful in my case. We have to fight with insurance to get an MRI approved every time, because it isn't considered necessary or approved for breast cancer screening. I have just about given up on the whole screening process, to be honest, though I get told by various family members (and you know who you are) that I'm being stupid and foolish and shouldn't let humiliation and the fact that it's a painful process stop me. I think I'd be more willing to tolerate the whole circus if I had any faith that it would accomplish anything. It's been seven years now since those cancer cells were identified.
Anyway. We've all been bombarded by the Pink. Pink ribbons, pink products, pink branding, pinkpinkpink. I have to admit that the Komen people have done a brilliant job of branding pink as breast cancer and making nearly everybody on the planet aware that pink has something to do with breast cancer and guilt and money and happyhappy feel good events to raise more money. Where the money actually goes I'm not too clear about, though others have raised questions about that. I understand that charities need to raise funds for advertising and promotion and it takes money to raise money, I get that. I don't begrudge that unless the vast majority of money raised is going back into the endless cycle of raising more money rather than to the actual cause they're supposed to be raising the money for. I can't pretend to understand how they need to allocate the money they raise.

I do think it's a good thing to make people talk about the disease, actually. Except that the various charities don't really talk about it. They proudly show happy healthy people wearing pink, running for the cause; some show boobs as a way to get eyeballs to look and give money; people will pay to see boobs, so why not exploit women's bodies in order to raise funds 'for a good cause'? End justifies the means, right? Save the ta-ta's and all that. Pay money to look at healthy happy boobs and we'll donate the money to breast cancer research. I get irritated with it all. I know, not a big surprise to anyone who knows me.

Even with the best of the charities, happy smiling survivors or healthy friends and family are usually featured. None of those charities talk about the women who have metastasized cancer, where the breast cancer spread and they know they will die from it. They are the unseen, unspoken-of ones that really need help, but they don't supply a feel-good story of beating the odds. It doesn't make them any less worthy of attention, but let's be blunt: showing pretty, healthy, perky breasts will raise more money than haggard sick women who have lost their breasts and all of their hair and who are certainly going to die, and who scare the shit out of anyone who comes near them. The ugly truth is that breast cancer isn't smiling and  pretty and pink, but then no form of cancer is, and there are so many different kinds of cancer that kill people.
People die of all sorts of cancers, not just breast cancer. I can't help but feel it's a mistake to direct all the money just towards specific cancers; breast cancer in and of itself isn't necessarily what's killing women; it kills when the cancer spreads to other parts of the body. There's so much focus on catching or preventing that early start in the breast that it deflects attention from the other aspects, and if there was more attention paid to the whole body, the whole person, all the cancers that occur, surely there would be a better understanding of what was happening at all of the stages, all of the cancers, all of the places to catch it and prevent it. I don't give money to breast cancer charities. I've lost friends and family to lots of types of cancers, and all of those cancers are worthy of research and prevention and early detection.

For the unseen, the unspoken of, the ones with 'terminal' stamped on their foreheads, there are some hospice places, people who care, but those services don't get the big bucks, they don't get the attention, and for a family facing such a devastating diagnosis, even finding, let alone qualifying for the resources to help them get through their coming storm is difficult and daunting and overwhelming. Hospice care doesn't get the big bucks, the marathons, the pink ribbon treatment.

You have to search hard to find actual practical help out there, whereas the Pink feel-good campaigns are in all of our faces, raising their multi-millions. I'm guessing that the Pinks generally don't help out with health care costs, the chemo costs, or hospice care, much less counseling services for families who desperately need some help coping. There is a very serious need for services that can act as advocates and resource guides for families and patients who are traveling that desperate road.There are some out there, but they tend to be small and locally funded and with limited resources. They don't get big press.

I find myself wishing that some of that feel-good pink money was going to help those unglamorous people with terminal cancer to cope with what is left of their lives, and to help their families to cope with their coming loss, and the aftermath and lingering loss, the changes due to losing a partner, a parent, the changes in economic means due to losing income and all  the rest of it. When the big pink ribbon campaigns start spending some of their money on those sorts of services, then I'll wear a pink ribbon with pride. Until then, not so much.