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. 

Nava

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.

Nava

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. 

Nava

That Fateful Mammogram

May 24, 2014 was the day I had my first-ever mammogram at age 47. I was flip about it. I told my Facebook friends I was going to do battle with the "hamburger press" for the first time, and afterwards, I said it really wasn't a big deal. I went for coffee with a new friend. I got a frantic phone call from my doctor at eight o'clock that night advising me to go for more screening. Here we are.

Now that a complete turn of the calendar has passed, I find I'm less inclined to look back upon those first few weeks of dealing with the specter of breast cancer. The number of times I said, "I just know it's cancer", either out loud or to myself, is not something I ever want to re-live. The terror I felt when I met with the radiologist after the second mammogram and ultrasound, and saw in her eyes that she knew, without having to perform a biopsy, that the news wouldn't be good, is a look I never again want to see.You get where I'm going. 

These days, I like to focus on everything I've learned over the past year. I'll never consider myself an expert on breast cancer, but my knowledge level has increased exponentially. I'm grateful for that; it's almost as if I took another graduate-level university course in what could potentially kill me.

Instead of writing a 25-page paper, I had to endure surgery and treatment, and everything else that goes along with those processes. The blog entries have helped me deal with the side effects, but I'd have much rather written a doctoral thesis about something pertaining to Shakespeare, Milton, Donne, or maybe Dante, just for shits and giggles. Twisting just my brain into knots would have been more enjoyable than what cancer treatment did to the rest of me.

My goal is, was, and always will be to have other women benefit from my experiences. Many of us are blindsided by our diagnoses, and feel very alone in facing them. I've been very lucky to have one person who is, was, and always will be my staunchest supporter. I count on many more people for electronic support, and a small group in the medical community who continue to treat me with the respect and dignity we are all entitled to. If you do have to go through something like breast cancer, having these elements in place makes it easier. And that's saying a lot.

I wasn't convinced that marking the year was a good idea. Then I thought, why not? I won't be mourning the passing of my breasts, even though they were taken from me on July 3, 2014, which makes the occasion kind of hard to forget here in America.

I won't be setting off fireworks to commemorate anything, but I will forever remind anyone who reads my words to never turn a nose up at learning something new. Education is life - literally. It might not make you an Internet celebrity, or earn you six-figure bank, but it is important. No one will be clicking "Like" or giving you the thumbs up when you're dead.

Nava

Tamoxifen, Sandra Lee, Mammography, and DCIS

Who likes buffets? If you do that's totally fine. I won't begrudge you, but I will share my thoughts:

I think buffets are evil. I think they are a bastion for those among us who have annoying food proclivities that border on being textbook eating disorders. They are all about quantity as opposed to quality. They illustrate the inherent gluttony of North Americans who think that multiple trips to the food troughs qualify as exercise. Number of times I've been to Las Vegas: three; number of buffets I ate at: zero. They remind me of my insane Canadian family.

I have no idea why I have a hair across my ass about buffets. Maybe I'm trying to channel my annoyance at being bombarded with myriad opinions about breast cancer, and the underlying acrimony towards women who are stricken with it. Really, this isn't very different from the incoherent right wing abortion/contraception/rape debates. Some segments of society want to lay the blame at our feet for our diagnoses, while simultaneously expressing frustration at not having better ways to diagnose and treat us.

Since I last blogged, I've read even more conflicting opinions about mammography, mastectomies, and ductal carcinoma in situ (DCIS). Yesterday, Sandra Lee, the Food Network personality and partner of New York governor Andrew Cuomo, announced she has breast cancer. She was diagnosed with DCIS and is undergoing a double mastectomy to avoid further treatment. Of course, the details of her diagnosis were not shared, leaving people like me wondering if there is more to it than just DCIS, which I like to describe as cancer warming up in the bullpen.

Ms. Lee's announcement included a pledge to advocate for screening as a way to save lives, which falls in line with populist opinion, but rankles the researchers and militant feminists who swear we do ourselves more harm than good. I think by now you all know how I feel about that, but my voice is barely a whisper in the shout box. We need to open a high-profile dialogue about risk, as opposed to detection, and no one seems to be listening. You can find the risk dialogue if you search for it, but unfortunately, it's easier to just argue the status quo than it is to start a new conversation.

I'm a little over a week into my Tamoxifen/Effexor regimen, and so far I've felt a few more intense hot flashes, and have had some minor digestive issues. To put it plainly, I can no longer drink hot coffee (the ice maker in my fridge is working overtime), and I've got my bottle of Imodium on standby. I'm hoping all this is just temporary, although I do very much enjoy iced coffee when the weather is warm.

Tomorrow, I am going for a skin test in preparation for receiving my first "vaccine" injection. I will be getting jabbed next week, during my third Herceptin infusion.

Nava

Natal Indulgence

Today is my 48th birthday, and I declare that I am entitled to rant a bit (not that I've ever refrained from ranting before) about what I've gone through during the past year and what it has taught me. 

As you might expect, my first birthday post-breast cancer diagnosis is a bit different from all the others. I'm not really thinking about my mortality; what I am thinking about is how my view of the world has changed over the past 12 months. So, buckle up and read on: 

The Worst Brings Out the Best: When you're confronted with a cancer diagnosis, you find out just how much you're willing to put up with. Trivial things that might have once caused your skin to crawl, and the hairs on the back of your neck to stand on end no longer elicit that type of reaction. Moreover, and this is something most of us already know, you find out who your true friends are. The ones who stick with you through cancer, are the ones who will be there with you through anything. The ones who scurry off like frightened rabbits should be consigned to the holes they crawl into and remain there for eternity.

You Must Find a New "Normal": First of all, there's no such thing as "normal". What you have to make peace with is the fact that your life as you know it has changed forever. It may sound strange, but since I had that experience once before, I was better prepared for it to happen again. Honestly, the second time around was easier to deal with. Don't get me wrong, hearing I had cancer was still greatly distressing, but I was lucky to have a better support system this time, than I did the first time my life was blown apart. 

It is Much Uglier Than You Can Imagine: Every woman's experience with breast cancer is different. Unfortunately, most of what we know about the experience comes from sources that gloss over a great deal of what it's really like. Celebrity tell-alls about cancer never used to bother me. Now, I roll my eyes at them. You'll never really understand until you go through it. And the irony is, we don't want to hear about it from the woman next-door; we have collectively become such colossal star-fuckers, that the little people don't seem to matter. 

We Must Destroy the Double Standard: One of the most shocking revelations I've had is discovering the double standard that exists when it comes to breasts. Women who elect to undergo plastic surgery to enhance their bust lines are applauded by everyone for doing something that will make them feel better about themselves. Women who undergo double mastectomies in an effort to give themselves peace of mind about recurrence are vilified, and thought of as unfeminine heathens who willingly mutilate their bodies. This has to change. Regardless of gender, we are all so much more than the sum of our body parts. 

Shut Up About Mammograms: Today, yet another article about mammograms found its way into my social media world. For decades now, we've had the prevention message jammed down our throats and most of us realize it is outmoded. We don't want to be clubbed over the head and dragged off to the breast press because someone wearing a pink ribbon is haranguing us. We understand there is conflicting information about when to get screened, how often, and all the false positives/negatives that occur. Instead of flogging us with countless contradictory studies and opinions, we need to find more effective ways to treat cancer, instead of thinking we can prevent it. At this stage of the game, there is no such thing. 

Stop Telling Us To Live With It: There are countless articles written about breast cancer being "over-diagnosed". Many medical professionals opine that there are certain types of breast cancer we can live with. I don't agree with that horse shit. My cancer spread to my lymph nodes and I never had any symptoms. We shouldn't have to live with cancer if it can be dealt with. People living with metastatic disease don't have a choice. 

We Must Take Responsibility For Ourselves: The easiest thing to do when it comes to dealing with health issues is to stick your head in the sand and hope for the best. I'm guilty of doing that, and so are you. If we take the time to learn about our family history and what we need to be conscious of, we're halfway home. Making informed decisions about how to stay as healthy as possible requires a bit of soul-searching, not a trip to the supermarket for a wheelbarrow of kale. Yes, eating healthfully is part of it, but knowing where you come from and what you might be at risk for is a significant part of the process. When we determine our risk factors, we can make more informed choices. Only we can do that for ourselves. I can't make you do it; I can only share my experiences, which will hopefully get you thinking about your own. 

Nava

My Eggo Is Not Preggo

I had my second Herceptin treatment the other day, and I'm due to get my first "vaccine" injection in three weeks. So far, so good with Herceptin; no vile side effects with the exception of a slightly crusty nose, which isn't anywhere near as bad as it was when I was getting Taxol. I hope it eventually goes away because someone, somewhere is going to catch me picking my nose. 

As promised, here is a link to some information about the study I'm participating in. There is a great deal of excitement about immunotherapy studies lately, because they seem to hold a lot of promise for controlling different types of cancer, including breast cancer. Herceptin is a pioneering treatment in this category, along with Gardasil. Many of us are more familiar with Gardasil because of the controversy surrounding it; some people ignorantly believe that vaccinating young girls with Gardasil to prevent cervical cancer gives them the green light to be sexually promiscuous, but that couldn't be further from the truth. I don't want to go off on a rant about all the misinformation flying around about vaccinations in general; I will end by saying both treatments are groundbreaking, and Herceptin in particular, is helping many women in the battle against recurrence. 

Last, but certainly not least, if you are reading this, please devote about 40 minutes to watching Killing Cancer. This documentary is a real eye-opener about the work being done to bring immunotherapy treatments to people who would otherwise be doomed without them. 

Finally, the title and image I've chosen have to do with the fact that I have to take a pregnancy test before every Herceptin infusion. Peeing in a cup is no big deal, but I chuckle at the irony that there's no way I could possibly be pregnant at this stage of the game. Alas, I must do it because protocol demands it; but I will giggle, smirk, and joke each and every time, because I just gotta be me. 

And now, the moment you've all been waiting for: Nava Does Menopause. 

As I said, all the pregnancy testing in my future is the epitome of irony since I have settled on an estrogen-suppression regimen. If you recall, my medical oncologist and I were discussing using Lupron and anastrozole, an aromatase inhibitor, to kill whatever estrogen is left in my body. I also toyed with the idea of having my ovaries removed, but I've abandoned that for the time being. I gave myself a much-needed break after the horrific conclusion of roasting, and during that time, I did some research on Lupron and decided it wasn't for me. Instead, I am starting Tamoxifen, and will take it for the next six-to-nine months. It's been eight months since my last period, so technically, I am still pre-menopausal. You have to be period-less for at least a year before you are classified as menopausal. Moreover, aromatase inhibitors are given only to women who have crossed over, which is why I am starting out with Tamoxifen. In addition to Tamoxifen, I will be taking the antidepressant Effexor, instead of my trusty Celexa. It turns out Celexa can render Tamoxifen less effective, so I had to switch. Here's hoping I can literally remain chill, and not be overcome by heat prostration - sorry, hot flashes. 

Stay tuned for updates. 

Nava