Saturday, August 22, 2015
The Noble Breast is moving to a new home!
I've created NavaBrahe.com, which is the new home of this blog, and some other projects I've been working on.
Thank you for all your support on this site. I look forward to your continued support in my new home.
Thursday, August 13, 2015
**The Noble Breast Is Moving! Shortly after this post, I will commence posting on NavaBrahe.com, which is now not only my name, but my domain! I'll post again when I am ready to re-direct from this blog, over to the new site.**
Now, on to the business at hand:
I have a beef with Sandra Lee. For about a week now, I've been reading snippets about how she's been battling a post-operative infection following her mastectomy. I can empathize with her plight, even though I managed to remain infection-free before, during and after my surgery. What I'm not happy about is that details about her situation are sparse, other than the typical celeb stuff, like being walked into surgery by Governor Andrew Cuomo, her boyfriend, and wanting fresh flowers and glasses of wine during recuperation. I want to know the who, what, where, when, and why - because when you declare yourself an advocate for women with breast cancer, you give up the luxury of privacy.
What I've learned over the past year (tomorrow is the one year anniversary of my first chemotherapy treatment), is that cancer is chock-full of details. Breast cancer especially. There are many variables, so if you're going to share your experience, you'd better do your best to not leave anything out.
I'm guessing that in Ms. Lee's case, her infection was likely caused by preparations for reconstruction; or not. There's no way to be certain because she's not telling us. Women who choose to undergo reconstruction after mastectomy need to know that the process does not always go smoothly. Many times, infections crop up, things go awry, and most importantly, there are circumstances patients must be made aware of, because in some cases, reconstruction could prove difficult, or, as in my case, inadvisable. As I've said repeatedly, every woman's case is different. And if you're going to share, you owe it to your followers to over-share. Less is not more in this case - more is necessarily more.
I could be overstepping here, because I am not a celebrity. I'm not suggesting Ms. Lee provide every gory detail, but the reason behind her infection would certainly provide an education to women who are going through similar experiences. This isn't a naked-while-pregnant selfie, a la Kim Kardashian; this is valuable information we don't often get from our doctors, nor do we go looking for it ourselves.
Lest I sound like a broken record, it's better to know, than not. And that should be a part of the role of advocate Ms. Lee and other celebrities have chosen to undertake.
Monday, July 27, 2015
Summer is always the sluggish time of year when it comes to work. It doesn't matter what you do for a living - working during the summer is a drag. Commuting in hot weather via public transit saps your will to live (thankfully, I don't have to endure that anymore), but so does that niggling feeling in the back of your mind that you're not working because the evil forces are conspiring against you.
As you all know, I am a freelance writer. It was quite difficult to resign myself to not working while I was going through chemo, but that's over and done with. Now that I'm feeling better and my brain is functioning at or near where it was prior to the infusions of poison, I'm still not working anywhere near as much as I'd like. Is this the universe conspiring against me? Am I unlucky? Is there a pile of shit out there with my name on it that I haven't stepped in yet?
At the end of May I got some work from the local office of a marketing content company. The pay was good and the work wasn't particularly taxing. The problem, however, was actually getting paid in a timely fashion. I've been lucky for the most part in my career as a freelancer, because I've only gotten ripped off twice by questionable clients. This time, I was sitting around like a schmuck waiting weeks for payment. Since finances have been tight, I was quite vocal to my contacts at this company about needing payment for my services sooner, rather than later. My assertive attitude paid off, literally, because I received payment for the work I did in June much quicker than I did for the previous project in May.
Here's where the evil forces come into play: I haven't done any work for this company at all this month. I sent an e-mail to my contacts telling them I was ready for a new project, and never heard back. Did I screw myself by being too aggressive? Or, is it possible that these people read this blog and decided they did not want to work with someone who had cancer?
My e-mail signature contains a link to this blog. Every time I apply for work via e-mail, I use this blog to showcase my writing skills. I'm starting to think that prospective employers might be somewhat hesitant to hire someone who is recovering from breast cancer. I've e-mailed at least a dozen queries over the past four weeks, and haven't had so much as an automatic reply from any of them. Do I offend? Has my mojo as a wordsmith deserted me? Or, am I damaged goods?
I've asked a lot of questions in this entry, none of which are easy to answer. When you go through a tough time in life, you want to believe there are good things waiting for you on the other side of those difficulties. Some people struggle constantly to keep cancer at bay for as long as they can. I like to think I am on a path where that won't be the case.
As far as my career as a freelance writer is concerned, I want to pick up where I left off, but I also want to believe that there are better, brighter opportunities ahead of me. Freelancing is an unreliable, stressful way to earn a living. You're always hustling; if you don't work, you don't make money. It's exhausting. But, in all that stress and exhaustion lurks an elusive notion that at some point, there will be a reward that will make it all worthwhile.
I'm wondering: where is my pile of shit, and when do I get to step in it?
Thursday, July 16, 2015
A couple of months ago, I joined the Facebook group of the organization Flat & Fabulous. The members of this group have been diagnosed with breast cancer, had mastectomies (single and double), and elected to forgo reconstruction. Another fun fact about having breast cancer is that it isn't always easy to put your breasts back if that is what you want. Many women aren't aware of this, and it makes for some interesting debates in the breast cancer community.
Not every woman who is diagnosed with breast cancer has to have chemotherapy and radiation. These women, along with women who elect to undergo preventative mastectomies, can usually have successful reconstruction soon after the initial surgery. Women like myself, who had to have chemo and get roasted, are the ones who have the toughest time with reconstruction. Chemo isn't really a factor, but once you've been roasted, your skin becomes compromised, which makes inserting things like tissue expanders and breast implants very difficult. Reconstruction for women like me involves fat transfer from other areas of the body, and skin grafting to make up for the damage we're left with. These procedures, according to the plastic surgeon I met with last year after my mastectomy, are possible, but can be complicated.
Since joining the F&F Facebook group, I've interacted with many brave and strong women who are committed to not undergoing reconstruction; some for the reasons I've mentioned, and others because they are perfectly content to not have breasts. Still more have been through reconstruction that has gone awry. There are stories of infections and other medical mishaps, asymmetry, and overall dissatisfaction with the end result that lead many to have their implants removed. Others will occasionally wear prostheses, affectionately known as "foobs" (fake boobs), because they cannot, or will not, go through the additional hell reconstruction can turn into.
The other day, I was finally able to order a compression sleeve to treat my lymphedema. The store I went to also had a full line of mastectomy products, including bras and prostheses. I decided to try on a bra with a pair of "foobs" to get an idea of how they looked and felt. I have to say, I had more fun playing with the squishy silicone foobs than I did wearing them. It felt weird to have on a bra with protrusions in the pockets, rather than ones attached to my own body. It felt odd to be wearing a bra again (I didn't miss it). The foobs looked okay, but I wasn't ready to order a pair. I have plans for my body that might include foobs at some point in the future, but for now, I choose to remain boob-less, and foob-less.
My choices vis-a-vis breasts might not be what another woman would choose, but that doesn't bother me. I'm glad to know there are other women out there who, for many reasons, choose to remain flat. These women are inspiring, because many of them can ignore society's obsession with the female form, and do what is best for them. I count myself among their ranks because I don't need to have breasts to feel like a woman. I don't catch glimpses of my flat chest in the mirror and wish they were still there. I'd rather be healthy and live another 50 years than worry about everyone else thinks of my flatness. It's a waste of time.
Maybe one day I'll change my mind and go for a pair of D-cup prostheses, or maybe some new surgical technique will be invented to make reconstruction easier for women like me. Until then, I am content to remain flat, fabulous, and healthy.
Thursday, July 9, 2015
"Sweet Jesus in a Jeep" is a popular expression of frustration I see time and time again on social media. I refrain from using it, since I am Jewish, but I've been known to verbally exclaim "Jesus Christ!" on a regular basis to express frustration about many things. At present, I am in a position where I am completely flummoxed, and there isn't an adequate expression to describe my frustration with the raging mammography debate.
This week, another study surfaced debunking mammography, and both Reuters and NPR reported it, re-igniting the debate about how more mammograms lead to the "overdiagnosis" of breast cancer, and do not increase the survival rate from the disease beyond the ten years following diagnosis. I have one thing to say about that: So fucking what?
I think by now we understand that mammography is a flawed detection method, and that the research community needs to come up with a better way to screen women for breast cancer. Researchers in North America and around the world are currently working on treatments that will manage certain cancers, and there is real hope that these treatments will benefit many people. In the meantime, another segment of the research community is intent on berating women for their reliance upon mammography, and the epidemic of breast cancer it causes.
We have two extremes: women, like myself, who had mammograms and were found to have early-stage breast cancer, and younger women, some of whom found lumps through self-examination, and are diagnosed with aggressive forms of late-stage breast cancer. In the middle are the millions of women who go for regular mammograms to either assuage their fears, or because they have family histories of breast cancer. All of us, I think, are confused and angry at the message these studies are sending: We are damned if we do, and damned if we don't go for mammograms, yet there isn't even a whiff of a suggestion about any viable alternatives we can explore to protect our health. Genetic testing is one alternative, but there is plenty of discourse out there finding fault with that, too. So, what are we supposed to do?
Here's my suggestion: stop pursuing these ridiculous studies that don't do anything except alarm the public, and cause divisive arguments about who is and isn't benefiting from mammography. We are courting another controversy where one doesn't need to exist. Mammography is becoming one more reason for women to feel bad about themselves. Instead of shaming us, why not come up with better ways to help us?
I am getting very angry at the judgement women dealing with breast cancer encounter at every turn. We are chided for going for mammograms; we are vilified for having bilateral mastectomies in an effort to protect ourselves. We are "overdiagnosed". I want to put my fist through a wall every time I see that word.
Someone please give me a cogent, reasonable answer to this question: WHAT ARE WE SUPPOSED TO DO?
Sunday, June 28, 2015
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
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.