Sunday, June 28, 2015

A Perpetual Snit

When I think about temper tantrums, the first person who comes to mind is John McEnroe. The man had the most legendary temper in tennis, and since Wimbledon gets underway tomorrow, it seems fitting to use his image. 

I've been looking at my Facebook posts for the past week or so, and I noticed I've become a bit of the curmudgeon I said I didn't want to be. I haven't engaged in any hurricane-force McEnroe-esqe rants - although I am always poised to use his signature line, "You cannot be serious!", whenever the opportunity presents itself. No, I've been snide and snippy; I'm in some sort of perpetual snit, and I seem to have dug in my heels quite firmly. 

First off, it's coming up on that day - yes, the one year anniversary of the boob-lopping. As you can probably imagine, all manner of cancer-related thoughts are going through my head, and I can't seem to stop them. When I close my eyes and try to sleep, I see the word "RECURRENCE" in big red letters. When I finally do fall asleep, I have strange dreams about people I haven't seen in decades, and we somehow wind up in the most bizarre places. There's a reason for this, I'm guessing: Effexor and I are not getting along very well, and I think the strange dreams are a side effect. As I've mentioned, Tamoxifen does not play well with SSRI antidepressants, and Effexor is the ONE drug that will let Tamoxifen do its job. I'm really in a pickle with this one. I don't want to attempt to wean myself off anything right now - my body has been through enough lately - and my options are severely limited. Well, truthfully, there aren't any. 

Next, I am still in the midst of an imbroglio with my insurance carrier over the compression sleeve. I do have coverage - about one-tenth of what the device costs. That's a no-go for me at the moment, since my income is nowhere near what it was before my diagnosis. My faithful patient advocate is still waging war on my behalf, but these supplies should be available to every woman without the hassle. Once you mess with the lymph nodes, swelling is inevitable; managing it can be akin to shoveling shit against the tide. We all know how much fun that is. 

I got sick again last week; another bout with a flu-like bug, similar to what struck right after I finished radiation. Ironically, I had another cardiac ultrasound scheduled that I had to cancel. I have to have one every three months as part of the study. They could slather me in bacon grease, but I'm not coming into contact with any sonic probes unless I feel up to it. After last time, this is non-negotiable. 

Mostly, I think I'm experiencing something similar to postpartum depression. I don't want to say I have post-traumatic stress disorder, because I think the acronym for that has been co-opted too often, and sadly, the condition is losing credibility. Don't get me wrong, I know PTSD is a real battle for so many, but I feel the term should not be used to describe the fallout from every tough life event we experience. Maybe "post-cancer depression" would work? Like the baby-blues, it inexplicably creeps up on you just when you're starting to feel good again, and bounces you into one emotional tizzy after another - sort of like what our friend Mr. McEnroe used to do with tennis balls. Is this real? Is this documented? Have there been papers published about it in peer-reviewed medical journals? Yes to the first question; as for the others, I'll get back to you. 

My breast cancer sister and fellow writer friend told me she went through something similar one year after her diagnosis. She said she felt like she had to soldier on through her diagnosis, treatment, and reconstruction. After everything was completed, she crashed. It feels like the same thing is happening to me. I've been through the four stages of cancer: diagnosis, surgery, chemotherapy, and radiation. I didn't quite believe in the "aftermath" portion of the experience, but here I am, smack in the middle of it. And, quite honestly, it sucks. 

I said I wasn't going to mourn the loss of my breasts. What I am mourning are the intangible losses you can only relate to if you've had cancer. Your life has been bisected into two parts: "before cancer", and "after cancer". You have no choice but to accept that. And like the four stages of grief, acceptance is always the toughest hurdle. 


Tuesday, June 16, 2015

Holding Pattern

One topic I've refrained from discussing on this blog is the health insurance issue. The reason is, up until a couple of months ago, I was one of those rare individuals who wasn't constantly battling with my provider. Unfortunately, all that changed in April, and now I find myself in a holding pattern while a very patient patient advocate wages war on my behalf. Is that too confusing? Maybe I should have referred to the advocate as "diligent". Well, since I am metaphorically hamstrung at the moment, I will indulge in the pun. 

One very disturbing fact about life in the good old U.S. of A. is that being diagnosed with cancer can lead you to confront very dire financial straits. Having watched every episode of "Breaking Bad", I remain convinced that series creator Vince Gilligan was chastising the insurance industry, in addition to giving us way too much information about how to manufacture metric tons of methamphetamine. Maybe if I had watched the series before my diagnosis, I'd feel differently, but I binge-watched it on Netflix while I was going through chemo.

Walter White was essentially a good guy, but when he received a lung cancer diagnosis, and found out that his shitty-public-high-school-teacher-insurance-coverage wasn't going to pay for his treatment, he morphed into Heisenberg, and became a monster. It's an extreme scenario, but one that many of us are familiar with on a not-so-melodramatic level. 

There is a push-pull between patient and provider; a sort of tango you must dance in order to get through your medical ordeals. This dance requires many steps, and can get quite stressful. The vast majority of us learn early on that once you are confronted with cancer, you might have a positive prognosis, but when it comes to your health insurance, you have no choice but to get used to living in the "Land of No".  

I was very fortunate to have gotten though my diagnosis, surgery, and treatment without any issues, but I had to switch insurance providers back in March in order to remain under the care of my family doctor and medical oncologist. That switch has caused me more stress over the past two-and-a-half months than dealing with cancer has caused over the past year. My new provider has said "no" to all my lymphedema treatments, including visits to the physical therapist I was seeing, and, at this moment, will not pay for a compression sleeve for my ever-expanding left arm. The patient advocate was able to get me 12 physical therapy visits to last the rest of the year, and is currently awaiting word about the compression sleeve. Moreover, I want to try out a pair of breast prostheses, because, well, I'm curious. Those aren't covered, either. 

 I must disclose that I am an advocate of the Affordable Care Act, more commonly known as "Obamacare", and my insurance coverage was made possible by it. I am a freelance writer, which means I work for myself - I do not have an employer that provides insurance coverage for me. I am so happy this is the case, because we all know people who slog away at dead-end jobs just for the benefits. We shouldn't have to do that, but in the U.S., "single payer healthcare", "socialized medicine" and "Canada-style healthcare" are phrases that scare the hell out of certain people. They shouldn't, but if you suffer from chronic ignorance and/or make your living as a paid political operative, you're going to disagree. Unfortunately, ignorance can be tough to treat, and lobbying is legal, for the most part. 

As I sit here waiting to get an e-mail or phone call from my diligent patient advocate, I wonder what it would be like to live in world where patient advocacy is an unnecessary occupation, like lactation consultants, or Feng Shui experts. 

Wouldn't it be great if we could get what we needed from our health care providers without having to resort to filing bankruptcy, or write television shows about destitute science teachers who have to resort to a life of crime to survive? 

We always say we have insurance "just in case". When just-in-case turns into life-or-death, the fight for survival shouldn't include worrying about what your provider will and will not pay for. I'd sleep a hell of a lot better at night knowing I don't have to fight for fake boobs and a contraption that will keep my arm from exploding. Since I'm currently not sleeping very well, I take comfort in the fact that if I want sleeping pills, my insurance will pay for them. 


Wednesday, June 3, 2015

Woman Dysphoria

I have no problem admitting that I'm more than a little obsessed with the Bruce/Caitlyn Jenner story. For me, it goes way beyond living with gender dysphoria for one's entire life; I find myself thinking, why would a man want to become a woman? I realize that is a very simplistic question, and the answer is far from black-and-white. The reason I'm asking is because women generally rank higher on the level-of-bullshit scale than most men do. Life can be so much harder for women because we love to make it harder for ourselves. Yes, you heard me - some of us revel in the misery and drama instead of rising above it. Go ahead, grab the eggs, tomatoes, and heads of lettuce and prepare to start flinging them in my general direction.

About a month ago, I heard the term "genderqueer" for the first time. The link I've provided to the explanation of that term is comprehensive, and also a little confusing. I'm getting quite an education about this, and I had no idea how complicated it can be.

When I was a kid, girls were either "girly" or "tomboys". I fell into the tomboy category, and I managed to stay there as an adult. Sure, I have a girly side, but it's not as prominent as it is for other women. I like to think I have a decent combination of masculine and feminine qualities, but I have no desire whatsoever to be identified as male. I am a woman inside and out, even though my body is lacking a couple of its identifying characteristics. I find this entire topic fascinating as it pertains to transgender issues, but also as it pertains to womens bodies and minds, especially the bodies and minds of women who have been diagnosed with breast cancer.

Let's face it, ladies: some of us can be quite a handful. You know what I'm talking about. I'm not gender-bashing here - think of the movie "Mean Girls". There's a lot of girl-on-girl crime going on in the world, and we all need to learn to be a little nicer to each other. The LGBT community has its struggles, and it turns out, so does the breast cancer community. I've witnessed a lot of curmudgeonly behavior out there from women who seem to get off on the misery.

Yes, breast cancer is a life-threatening disease, and its methods of diagnosis and treatment are far from perfect. The disease itself exacts a toll that stays with you for a very long time, and could possibly kill you. These facts are no excuse for us to be flaming bitches towards each other. We all have our unique experiences, in addition to having a common ground we need to share. We are aware of the tornado of controversy swirling around us, and we need to stop adding to it. I'm not saying we need to hold hands in a circle and sing "Kumbaya", but we do need to take down the level of girl-on-girl crime. Curtail the mastectomy-and-mammogram bashing, please. Respect the decisions of your fellow woman and support her. It's simple, and it shows compassion and empathy - something women like to think we're better at than men.

I am in no way saying that gender identity issues and breast cancer are the same. There are many similarities, but they are two totally different animals. What should be stock-in-trade across the board, however, is caring, compassion, and understanding. Many women need to "man up" and stop trying to focus all the attention on themselves. Seriously, ladies, there are people out there who have it a hell of a lot worse than you do. Please remember that. Thank you.


Monday, June 1, 2015

Donate Some Thought

Scamming has gotten to the point where we can joke about it. The majority of us know those poorly written e-mails from Nigerian royalty promising multimillion dollar awards are scams. The problem is, we now have scams coming at us from every direction, and it's getting much harder to spot them. To further exacerbate our confusion, legitimate, licensed charities are in on it. They couldn't possibly be scamming us, could they? 

Last week, my fellow breast cancer sister got a call from a prominent breast cancer charity, the Breast Cancer Charities of America, looking for a donation. This call came on the heels of the Federal Trade Commission (FTC) blowing the doors off a $187 million dollar scam perpetrated by a group of cancer charities. 

My friend is no pushover. She questioned the caller about how much of her donation would actually go towards helping women with breast cancer. When the caller responded that about 15 cents of every dollar goes to women in need, my friend declined to donate. When you read about administrators of charities spending millions on cars, houses, vacations, and other expenditures that only benefit them, you have to think twice before you loosen those purse strings. Only 15 cents out of every dollar? That's thievery, not charity. 

The problem is, this type of thievery is easy to get away with. You can set up a legitimate looking Web site, write fake testimonials from individuals who claim the organization has helped them, and recruit famous people as mouthpieces for hire. In the end, a trickle goes to the actual cause. And it's all legal if you have the proper paperwork in place. No one will be the wiser, until someone comes looking. And we all know, it takes very little effort to unravel a good scam. 

The next time you get a solicitation phone call*, or spot what looks to be a legitimate charitable organization online, please do your homework before whipping out your credit card. A reputable charity will have no problem disclosing where every penny of your donations go, and it is up to you to decide whether or not that particular charity is worthy of receiving your hard-earned scratch. Keep in mind that there are many low-profile organizations in your area doing great work to help people. Very often, it's best to donate to one of those, than it is to send money to the high-profile behemoths that are most likely in bed with a harem of corporate partners that are spending your donations on slick marketing campaigns to sell products. 

*If you don't want to be pestered by phone at all, add your number(s) to the National Do Not Call Registry