Radiation, Week Four

Kramer as a roasted turkey has returned, which I think is exponentially more amusing than my calendar with 19 roastings crossed off. Twelve more to go. 

Today, I had a port flush (I will be keeping my port in place for at least another year. The reasons will follow in a few weeks) and blood work. I also met with my medical oncologist, and we had an interesting discussion about life after radiation. 

Originally, my doctor told me that I would be taking the estrogen-inhibiting drug, Tamoxifen, for at least five years. This drug is usually given to pre-menopausal women to prevent a recurrence of estrogen-positive breast cancer. Tamoxifen, like almost every other prescription drug, has some side effects, which include hot flashes, blood clots, the possibility of uterine cancer, and others.

I'm now picking this up on Saturday.

Yesterday, our discussion included alternatives to a five year course of Tamoxifen, which might consist of two years of taking the drug, and then taking an aromatase inhibitor for another three years. An aromatase inhibitor also stops estrogen production, but in a different way, and also with side effects. Then he spoke about the possibility of giving me the drug Lupron, which takes the process a step further by putting me into full-blown menopause. Lupron is also given to men suffering from prostate cancer, to slow the progress of the disease. I would receive that every three months by injection for a couple of years, and then I would be assessed to determine if I am post-menopausal.

Then came the most drastic option, which would be having my ovaries removed. I was kind of surprised that he presented this as a choice, since my genetic test came back negative for the BRCA gene. The more I've thought about it over the past 24 hours, the more I see the logic behind that choice; I willingly parted with my breasts to reduce the possibility of recurrence, and since my cancer was estrogen-positive, why not remove the last estrogen-producing body part I have, rather than bombing it with more drugs? Of course, I have not made any decisions yet, other than agreeing to go with Lupron as opposed to Tamoxifen to start, and then I will consider permanently closing down my egg farm. I'm turning 48 in May, so the likelihood of one of those eggs being fertilized is nil.

As liberating as it will be to end the hardcore treatment phase of this journey, I'm coming to terms with the fact that having breast cancer will be with me in other ways for a very long time. Emotionally, it has changed my perspective on so many things, and physically, I have an entirely new attitude towards my body. There is so much living left to do, and I want to do everything I can to ensure that there will not be more revolts staged. It's my body, and I can do what I feel is best for it.

One day, I will be too old, and too decrepit to do much of anything. Until then, stay the fuck out of my way.

Nava

Radiation, Week 3, and Surgical Follow-Up

You're wondering where my picture of Michael Richards as a turkey is... Well, I chose this one of Bill Murray instead, for no reason other than I like it. It's from last week's Pebble Beach Pro Am golf tournament, during which he always does a great job making everyone laugh. Though I'm not a golfer, I've been to Pebble Beach, and it is one of the most spectacular places here in North America.

Anyway, I've completed three weeks of radiation, although not a full 15 treatments since Monday was a holiday. I've got 17 left. My skin is starting to pink up slightly, and as I mentioned yesterday, the lymphedema in my left arm has gotten worse. My physical therapist and I agreed to go at it more aggressively once radiation is completed. I am very determined to not have a reaction, as I said. If I have to sleep in my tub of argan oil cream, I will do it.

Today I had a follow-up visit with the surgeon who performed my mastectomy. It's a little over seven months since I had the surgery, and all is well. We discussed a few things about my general health and my chemotherapy experience, and he asked me to participate in a clinical trial.

 It turns out that there isn't much in the way of follow-up care for women like me who have had bilateral mastectomies, so he asked if I would be willing to commit to coming in every six months for three years for an ultrasound to check the area where my breasts used to be. Of course I agreed, since I was actually wondering what could be done to check for recurrence in that part of my body. I had heard something about having periodic ultrasounds, since it's not like I'll be able to have mammograms (thankfully). He told me that there isn't much data compiled for women like me who have had a "double", and since the procedure is being performed more often now, statistics are needed to see how women are faring. I had my first ultrasound today, and I will be going back for another one in August.

So, that's it for week three.

Have a great weekend.

Nava

Fear and Mortality

 I'm beginning to think roasting is having a negative effect on my brain. For the past few days, I've felt more annoyed, pissed off and agitated than I've been in recent months.

The thought of shutting the laptops and avoiding social media has crossed my mind, but without access to both, I am not capable of working. I suppose I could go get a job as a greeter at Wal Mart, or a barista at Starbucks (not that there's anything wrong with that), but that would be treasonous to my education, not to mention my body. I'm still not physically capable of all that much, and if the Internet did not exist, I'd be standing on an entrance ramp to Interstate 5 asking for spare change.

Why am I telling you all this? I'm feeling a bit overwhelmed by information right now. I'm almost halfway through my 31 roastings, and I'm thinking about the next phase of treatment.

Shortly after roasting concludes, I will embark on a five year course of Tamoxifen, an estrogen suppression drug which will hopefully prolong my life and prevent a recurrence of my cancer. I've never given much thought to the "prolonging my life" part of all this; it's been more like, okay, when I'm done, I'm done. Next? At the same time, I'm not ignoring my mortality, I'm just not engaging with it. I stole that from Dr. Oliver Sacks, whose moving essay was published this morning on the New York Times Web site.

You might be familiar with Dr. Sacks's work from his 1973 book Awakenings, and the 1990 movie of the same name that was based on the book. That movie starred Robin Williams as Dr. Malcolm Sayer, and Robert de Niro as Leonard Lowe, one of his patients who was left in a catatonic state after an encephalitis epidemic during the early 20th century.

I've never read Dr. Sacks's book, but I loved the movie, and Robin Williams's portrayal of a neuroscientist who wanted to treat victims of encephalitis, whose minds were being held captive by their bodies.

In his essay, Dr. Sacks, 81, told the world that he has terminal liver cancer. He said that at his age, he still felt that his health was robust, despite an earlier bout of a rare ocular cancer that left him blind in one eye. He talks of the unlikely recurrence of his type of cancer, but it found a way.

I don't want to give away the brilliance of his words, but Dr. Sacks managed to articulate two things that I've been thinking about, but haven't managed to get down on paper. He talks about feeling "a sudden clear focus and perspective", along with a "detachment" from things that are not that important anymore. He says there's still plenty of life left, which he intends to live with "audacity, clarity, and plain speaking", along with some "fun" and "silliness".

I realize that Dr. Sacks has a few decades on me, but when cancer enters your world, you can't help but think about the specter of it recurring. I get that. I could go the rest of my life without it returning, or I could find myself in a pickle again at any time. The trick is to not let it rule your life, and to realize that it is okay to be afraid.

Despite coming to terms with all that goes along with a cancer diagnosis, it's still possible to have a bad day or two on occasion. As I said, I'm annoyed, pissed off and agitated. The lymphedema in my left arm is not getting any better, and I must admit I've been neglecting my wrapping. My substitute radiation oncologist (my regular doctor is on vacation), and a couple of nurses, are waiting for me to admit to fatigue, and for my skin to break out in a sunburn-like rash. "You WILL have a reaction", a nurse told me today. I felt like responding, "Maybe you WILL have an aneurysm." I've gone from hearing the "oh it's not that bad" approach from the chemotherapy people to Schadenfreude from the radiation people. You can see why I'm so irritated.

And so it continues. Fourteen roastings down, 17 more to go.

Nava

A Penny For Your Hot Flashes?

I need to preface this blog entry by saying I have zero medical, legal, and pharmacological training.

What I do have is plenty of indignation towards the pharmaceutical industry, the U.S. Federal Communications Commission (FCC), and U.S. Food and Drug Administration (FDA) for their unethical practices. What's got me so hot and bothered (pun intended) is a television commercial I saw a little while ago for a recently approved non-hormonal hot flash medication named Brisdelle.

I was watching the Food Network, and preparing dinner, as I like to do, when a commercial came on for the "first FDA-approved, non-hormonal treatment for hot flashes". My interest was piqued, because like so many other post-chemo-women-treated-for-estrogen-positive-breast-cancer-who-are-now-menopausal, I've been having hot flashes. Moreover, after roasting concludes, I will be taking Tamoxifen for five years, which means those hot flashes will likely be my best friend for a long time.

Naturally, I would love to talk to my doctor about a non-hormonal remedy that might ease the flop-sweat and allow me to sleep with the window closed when the temperature outside dips below freezing. I was reaching for a pen to scrawl down the name "Brisdelle" when the generic name of the drug was mentioned, followed by the requisite litany of warnings and potential side effects.

It turns out, Brisdelle is an alternate brand name for the drug paroxetine, which is a selective serotonin reuptake inhibitor (SSRI), otherwise known by us lay folk as an antidepressant. It is usually sold under the brand name "Paxil", which in addition to being widely prescribed to about one-in-10 Americans, is the butt of many snide remarks about depression.

Prozac is the most commonly known SSRI, but if you have any experience with this class of drugs, chances are you are also familiar with the names Paxil, Zoloft, Wellbutrin, Celexa, and Lexapro.  And if you have a tendency towards mood swings, someone is probably whispering behind your back, "Is she up on her Prozac dosage?". or, "Geez, she forgot to take her Paxil/Zoloft/Wellbutrin, etc. this morning." Then there's Xanax, Valium, Ativan, Klonopin, and others. Those are anti-anxiety medications, which comprise an entirely different class of drugs.

The reason I am so hot under the collar (another intended pun) is because I know a bit more than your average person about paroxetine and the other SSRIs. For about four years, I wrote copy for Web sites maintained by a personal injury law firm, and read more about the dangers and side effects of SSRIs than I care to talk about. The side effects on unborn fetuses are particularly awful, because if pregnant women take SSRIs, their babies could be born with heart and other organ defects, along with more maladies that can cause lifelong problems. The pharmaceutical companies that manufacture and market these drugs failed to warn doctors and pregnant women about the risks they were exposing their unborn children to, which resulted in billions of dollars in lawsuits being filed after women who took SSRIs while pregnant started giving birth to babies with birth defects.

According to this news story, Brisdelle was originally voted down by an FDA advisory panel as a treatment for hot flashes. My guess is that a few smart doctors on that panel wanted to put the brakes on the rampant off-label use of certain drugs. If you watch the interview at the top of the story, you'll see that the gynecologist interviewed by the news anchors admitted to long prescribing Paxil as an off-label treatment for hot flashes. She claims that fifty percent of her practice consists of menopausal women who experience "debilitating" hot flashes on a daily basis.

I get hot flashes multiple times during the day. At night, I usually can't fall asleep without a few waves washing over me before finally nodding off. Is it a pain in the ass? Yes. Do I wish they would go away? Of course. But since I already take Celexa for depression, I will not be talking to my doctor about taking another antidepressant that may or may not reduce the occurrence or intensity of my hot flashes. Chances are, I'm just going to have to live with them.

Yes, I take an SSRI for depression. Before my cancer diagnosis, my life was not very pleasant. My doctor took pity on me and gave me a sample package of Lexapro to try. When I reported that it made me feel better, she wrote me a prescription. When I needed to find an alternate medication because my insurance stopped covering Lexapro, she switched me over to Celexa. I've been taking it for about seven years.

I read up on the other SSRIs just for shits and giggles, and found that Paxil and Zoloft are the two most hardcore of the bunch. I was looking for something just to take the edge off, not because I was suicidal. Also, Paxil and Zoloft have the shortest half-lives of all the SSRIs, meaning that if you aren't up on your dosage, you are likely to experience some unpleasant side effects.

When I moved back to the U.S. from Canada in October 2012, I did not have health insurance until January 2014. During those 16 months, I made the 90 Celexa tablets I brought with me last until I was covered once again. I never could have done that with Paxil or Zoloft. In short, I would have been a basket case. SSRIs are notoriously difficult to discontinue. I worry about how it will be when I decide to stop taking them. But for now, I've got enough keeping me occupied.

Pharmaceutical companies, along with the FCC and the FDA, are doing Americans a great disservice by advertising prescription medications on television, in magazines, online, and pretty much everywhere. Tens of millions of us take at least one prescription medication, and more of us rush to call our doctors because we think we need the medications we see advertised. Ours has become a nation of pill poppers, and the more we see, the more we think we need to take. If our biggest problems could be solved by swallowing a pill, of course we'd do it. And many doctors enable us by writing millions of prescriptions for drugs we do not need because they are getting paid by these pharmaceutical outfits to do so.

I've long been a proponent of not allowing prescription drugs to be advertised. After all, the FCC no longer allows tobacco products to be advertised. The difference is, prescription drugs are supposed to help you, not hurt you. The truth is, they will hurt you, if you don't do your homework. It all goes back to being an informed patient, and not relying only on your physician to determine your path to good health.

And by the way, I do remember mentioning that oncology is rife with off-label drug use. I was given a prescription for Ativan to take for nausea. I took it; it helped me. When I no longer needed it, I stopped taking it. All bets are off when it comes to chemotherapy. If my oncologist told me that dropping acid would have made me feel better, I would have done it.

Nava

Radiation, Week 2

Ten roastings down, 21 more to go.

As I said in my last post, I've embraced the schmear. I schmear once when I get home from the hospital, and again at night before I go to sleep.

According to my radiation oncologist, and a couple of the nurses, the possibility of having side effects increases at about the third week. Next week should be telling, but I'll only be receiving four treatments, since both oncology departments will be closed for President's Day.

So, roasting takes a holiday; at least for one day.

Have a great weekend.

Nava

Have a Schmear

If you're from the East Coast (New York, specifically), you know what a schmear is. As in, "I'll have a bagel and a schmear." In that context, the schmear is cream cheese. In the context I'm using it, it means to slather yourself with some sort of moisturizing cream after roasting - er, radiation.

I'm nearing the end of my second week of roasting, and the only way I can describe the experience is tedious. The treatment itself is very quick and I don't feel anything, other than the discomfort in my arms from having to hold them above my head.

Roasting is a very different experience from poisoning - sorry, chemotherapy. It's a very solitary endeavor because the treatment consists of lying on your back while two or three radiation technicians position your body so very specific areas can be targeted. In my case, the areas being treated are the left side of my chest, where my breast used to be, and under my arm, where the cancer spread to my lymph nodes. The device, or machine, looks like this:

And yes, that entire huge section hovers over you and is positioned by remote control. Pretty freaky, huh?

Really, there's not much to it. At least not yet. As I mentioned in my previous post, the waiting room chatter can get rather gossipy when the conversation turns to side effects. The women I encountered, who were also being treated for breast cancer, complained of burns so severe that they had to stop treatment for a few weeks to allow their skin to heal. The men were silent. I'm guessing that if they were receiving treatment for prostate cancer, talking about roasting their groin area isn't a pleasant topic. Women generally tend to venture far into TMI territory; think about it - we have so much more to contend with - and we like to share. Two of the women shocked me when they said chemotherapy was a "cakewalk" compared to radiation. Maybe they didn't have the good stuff to schmear all over themselves. I'm using Josie Maran Unscented Argan Oil Body Butter, pictured above.

I am a fair-skinned Jewish girl. In my younger days, my hair was light blonde, and my skin pale and prone to sunburn. I spent many sunny summer days sizzling on the beach at Jacob Riis Park in Queens with my Italian next-door neighbors, who used to marinate their olive skin in baby oil. In those days, I was partial to Coppertone SPF 4, or Ban de Soleil orange jelly, which I'm pretty sure didn't provide any sun protection, but smelled amazing. Then, there were all those day-camp trips to Jones Beach; after that was the time I fell asleep on the beach at Kingsborough Community College (yes, one of my alma maters actually has a beach), and burned my face so badly that my eyes were swollen almost shut for over a week.

I think the hole in the ozone was much smaller back then, because now I won't leave the house without at least SPF 15 on my face, despite the fact that I live in a place where it rains a lot. Happily, I don't have much in the way of wrinkles or sun damage, which is miraculous, because at this point, if I had continued that kind of roasting, I'd look like lizard Birkin bag. And by the way, I've never ever been to a tanning salon. Hell, I don't even self-tan or use bronzer, although I'm thinking about starting.

For now, it's me, my crackerjack radiation techs, and my "tub of love", as Josie Maran likes to call her argan oil body butter. If it saves my skin from melting off my body, I promise to buy a case of it.

Nava

Radiation, Week 1

Just a quick check-in after five roastings. So far, so good, but from the waiting room-chatter, this is the calm before the storm.

The hardest part, to be quite honest, is having to hold my arms above my head during the treatment. My left arm is still numb in places, and the pulling sensation I get when I raise it above my head is strong. My swelling seems to have stabilized, and I don't see my physical therapist again until February 18.

Now onto more humorous endeavors. The picture above is Michael Richards as Kramer in "Seinfeld". He got so obsessed with tanning that his friends thought he was roasting himself like a turkey. Who better to be the patron saint of roasting than him?

Have a great weekend.

Nava

Boob Talk

My obsession with YouTube beauty gurus took an interesting turn tonight. The two girls, women actually, pictured above, are Essie Button (left), and Amelia Liana. They are two of the more entertaining beauty gurus I've stumbled across recently. What Lisa Eldridge provides in beauty knowledge, these two take a step further by making it entertaining. As much as I love Lisa, there are times when I yearn for more than just watching her fluff blusher onto her cheeks with a hideously expensive Japanese makeup brush against a white backdrop.

In the video, Essie and Liana talk about what it's like to have boobs. They've also talked about their periods, and other female topics that no longer apply to me, but all the same, I find them sweetly endearing. They also make me wonder what life would have been like if YouTube existed 25 years ago, when I was roughly their age.

For the longest time, my opinion of YouTube was not a very positive one, until I discovered these girls/women making themselves up for tens, sometimes hundreds of thousands (and millions in some cases) of subscribers. These videos got me over some seriously rough patches as I recovered from my mastectomy, and dealt with all those detestable chemo treatments. 

While some of the YouTube girls/women are, shall we say, a little clueless in the life department, and could use a bit of help with diction and grammar, these two are the real deal. What made me want to write about them was their authenticity, which reminded me of the W.H. Auden quote I used in my previous post. 

Two women discussing their breasts can be a bit off-putting, especially when the complaints start flying, and the topic turns to boob jobs and wanting to look like Pamela Anderson did in Baywatch. That's not what these two did. Their honesty and humor while discussing boobs was so refreshing, it made me forget that my own set is likely compost by now. I wanted to join in and regale them with stories of my own first bra, how once I fell out of a strapless bra at a sweet sixteen, and got molested in a lingerie shop by a bra fitter who got frustrated because my nipples refused to hold their position in the center of the cups. 

All women have stories about their breasts, regardless of how old we are, or if we even have breasts anymore. Not having breasts doesn't mean you're no longer a woman, and what brought a tear of happiness to my eye was that these girls get it. They're half my age, and they get it. They're also earning major scratch making these videos, but that's a conversation for another day, on another blog. 

The income thing notwithstanding, my faith in womanhood has been bolstered a bit, thanks to Essie and Amelia. They understand that your endowments can be a blessing and a curse, but they're not representative of who you really are. 

Nava