Misguided by emotion. Foolishly thinking one more surgery would do it. Clamoring for “the end.”
Although my intellectual side knew it could not be, my psychological side was hopeful that my recent hysterectomy would free me from adjuvant therapy for stupid, dumb breast cancer. My 3 1/2 years of Tamoxifen were bad. Really bad, and got progressively worse. I wrote about my Tamoxifen experience a time or two, including the always entertaining T-Rage. I was a happy girl after kicking Tamoxifen to the curb, but I did worry about the estrogen that was no longer being blocked by the drug, nasty as that drug was.
Removing my girl parts, which is a good thing in preventing breast cancer recurrence, would seem to be the answer, no? Yanking my ovaries meant my body could no longer produce estrogen, which could no longer feed any errant cancer cells that hung around after lopping off both breasts at the ripe old age of 40.
However, as those of us in Cancerland know, being pro-active and doing all you can isn’t enough. It’s never enough.
I’ve surrendered both breasts, both fallopian tubes, both ovaries, my uterus and my cervix in hopes of leaving Cancerland. Cumulatively, I’ve spent more than a month in a hospital bed, and suffered through 267 days of post-hospital antibiotic therapy for that nasty nosocomial infection I picked up along the way. And yet, it’s not enough.
It’s never enough.
While my nonexistent ovaries can no longer make estrogen, now I have to worry about estrogen from my adrenal glands. These two glands are located just above the kidneys in a space called the retroperitoneum and produce small amounts of estrogen. Even though I am now sans girl parts, I still have to think about the fact that my body is full of cells, both healthy ones and potentially cancerous ones, that contain estrogen receptors. These receptors can go haywire when they come in contact with estrogen, and can set off a shit storm called cancer recurrence. My defense against the potential shit storm is yet another drug.
Introducing Femara. It’s an aromatase inhibitor whose job is to find the enzyme that’s required to make estrogen and get rid of it. It’s similar to Tamoxifen in that it protects me from estrogen and has similar side effects: hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, and trouble sleeping. It’s different from Tamoxifen in that it’s for postmenopausal gals and it doesn’t increase the risks of blood clots or uterine cancer. It does, however, erode bone density. With these drugs, it’s a give & take. Mostly take.
My cutie-pie oncologist wants me to start taking Femara. Because the 3 1/2 years of Tamoxifen hell weren’t enough. Because surrendering both breasts, ovaries, fallopian tubes, uterus, and cervix weren’t enough. It never ends.
The studies on Femara and recurrence show promise. The two main studies show that Femara reduces the risk of recurrence, increases the span of time before the cancer recurs, and reduces the risk of the cancer spreading to other parts of the body.
All good, right? Wouldn’t you want to do everything you could to reduce the risk of recurrence? Even if it meant taking yet another drug and enduring more side effects for years and years and years?
It’s never enough.
I have a new Tamoxifen side-effect to add to my long list: T-rage.
T-rage joins an unpleasant cast of characters that feature starring roles in my daily existence. These characters take turns on center stage and compete for screen time. They jostle and nudge each other in their attempts to take over for real.
Who are these characters? The cast list is long, so bear with me. I’ll save the newest, T-rage, for last. These characters are all sponsored by my frenemy Tamoxifen. It’s my frenemy because it’s alternatively saves my life while also making me miserable. That life it is busy saving is increasingly becoming one not worth living.
Anxiety: because once you’ve faced down cancer, you need heightened worry and fretting, right?
Bone pain: an ache so constant it only changes with the inexplicable flares that come along. Pain so acute I swear I can see my bones under my skin, because the pain illuminates them. I’d say I’m like a skeleton, except I’m not because of the extra weight that literally weighs me down, thanks to my frenemy Tamoxifen. If only I were a joyful, dancing skeleton.
Joint pain: while I don’t envision the joints beneath my skin the way I do my bones, they hurt. A lot. Most of the time. And I don’t even want to think about Tamoxifen’s contribution to my bad knee.
Hot flashes: because living in Houston–land of eternal summer and omnipresent humidity–isn’t enough to keep one drenched in sweat.
Sweat, sweat, and more sweat. Like the clown car at the circus, the sweat just keeps coming.
Dry skin: Why can’t all that sweat moisturize?
Brown spots on my face: I’m aging at a quick clip. Not pretty on a banana, not pretty on me.
Thinning hair: To go along with the dry skin and brown spots. Pretty. Real pretty.
Peach fuzz: there’s hair where I don’t want it while that on my head is withering. By then end of my proposed 10-year course of this damn drug, I’ll have a full beard and a bald head.
Mental fogginess: huh? What was I going to say?
Sleeplessness: because the previous characters don’t wreak enough havoc, now there’s no escaping them.
Fatigue. Crushing fatigue. As in, each of my limbs feels as if it weighs 50 pounds. As in, it’s a Herculean effort to get off the couch. As in, I’m not rested after a full night’s sleep. As in, this bites.
Irritability. Major irritability. Sometimes I can barely stand myself. It is ugly.
And, introducing irritability’s next-of-kin: T-rage.
You’re heard of ‘roid rage and road rage, and now T-rage. It’s similar to the other rages, in which something — in this case, Tamoxifen — causes a major-league reaction to a minor provocation. The sight of a Toyota Camry ahead of me in traffic (I hate Camrys). The guy conducting a shouting match on his cell phone in the middle of the grocery store (does anyone want to hear him squabbling with the unfortunate soul on the other end of that conversation?). The lady in the grocery store who leaves her cart in the middle of the aisle then gives me a go-to-hell look when I say “excuse me.” The asshat in the middle of the parking lot waiting for the person loading their groceries to pull out rather than picking another space. There are a hundred parking spots, but he’s gotta have that one. It’s a wonder I got out of the store without someone filing assault charges.
The T-rage sends me into certifiable-crazy mode in an instant. It’s not enough to just get around the Camry in traffic; I want to ram it. I’m not satisfied with shooting the cell-phone combatant a dirty look; I want to yank the phone out of his hand and shove it so far up an orifice he’d need it surgically removed. I’m not at all content to say “excuse me” to the inconsiderate grocery shopper in a shitty tone; I want to push her down and run over her repeatedly with her ill-placed cart. I don’t want to just shake my head at the fool holding up traffic in the parking lot while he waits for that close spot; I want to hurl my gallon of organic milk through his windshield.
Don’t even get me started on the moron in the mini van at middle-school pick-up yesterday who thinks the “No parking” sign doesn’t apply to her. No longer content to roll down my window and politely (or rudely) ask her not to park there, with T-rage, I want to do mean and horrible things to her.
I’ve got the T-rage. Real bad.
This. Is. Not. Good.
I know full good and well that I would not do well in prison. I’m much too fond of my own personal space, unlimited moisturizer, and fresh produce. Oh, and alcohol. Some inmates want a cake with a file or a shiv baked inside; I’d need my visitors to smuggle in booze.
Since prison is not a viable option, I need to get a grip on this T-rage. I need to figure out how to get through my day without murderous thoughts about the neighbors who can’t be bothered to pick up the crap-tastic freebie newspapers littering their driveways. The sight of so many neglected second-rate publications should not incite such violence. And yet, it does.
There are tips for dealing with road rage, and I’d suggest the best way to avoid ‘roid rage is to simply not take steroids. But I’ve not found any helpful tips on avoiding the T-rage. I’m gonna have to look for a 12-step program. Right after I punch someone.
The WEGO HAWMC is quite a mouthful! WEGO Health describes itself as “social media’s most active online health community — Health Activists. These influencers, organizers, connectors, leaders and contributors are passionate about helping others lead healthier lives.” WEGO Health Activists have thrown out a challenge: the HAWMC, or Health Activist Writer’s Month Challenge. It’s a post-a-day challenge taken on by several bloggers I greatly admire. One of them asked if I was planning to participate, so here we are.
I missed Day 1, so will start with Day 2, which is pretty scrambled logic for this Type-A girl, but part of the challenge is thinking — and blogging — outside of our comfort zones so I guess I’m in.
Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition/activism?
Breaking news: a woman at my gym just told me about a CURE for CANCER.
It’s the news we’ve all been waiting for! The War on Cancer, launched by President Richard Nixon in 1971, is over!
I can’t believe this earth-shattering news hasn’t hit the airwaves yet. None of the major news organizations have broken the story yet.
Hmmm. That’s weird.
Well, I suppose she’s just ahead of the curve. She must be a genius to know of this CURE for CANCER well before anyone else.
Here’s how it went down: This woman, whom I’ve never laid eyes on before, was chatting with an acquaintance of mine. We’re “gym friends” — we see each other at the gym and exchange pleasantries. She may know my name, but only because she hears the trainer yelling it when he wants me to quit chatting and get to work. I don’t know her name, nor do I know the name of the woman who knows the CURE for CANCER.
For simplicity’s sake, I’m going to call my acquaintance Francesca (because I’ve always liked that name), and I”ll call the woman who knows about the CURE for CANCER Koo-Koo Bird.
Francesca and Koo-Koo Bird were talking while on the AMT, my favorite cardio machine, when I climbed on next to Francesca; Koo-Koo Bird was on the machine against the wall. Francesca asked me how my newly repaired knee is healing (badly and slowly and painfully) and how my rehab is going (much the same). In the course of our chitty-chat she asked how long ago it was that I was diagnosed with cancer. Koo-Koo Bird’s ears perked up at the mention of cancer–likely because she was eager to tell me that she knows of the CURE for CANCER.
Koo-Koo Bird, who has a very thick Indian accent and a very soft voice, didn’t even bother asking my name before asking me pertinent details about my cancer diagnosis. I’ve never been one to shy away from answering direct questions, so I gave her the deets. She nearly fell off the AMT in her haste to tell me, in her heavily accented and soft voice, about the CURE for CANCER.
I still had a mile and a half to go on the AMT, so I was rather a captive audience and I listened to Koo-Koo Bird describe the magical powers of soursoap.
“Excuse me?” I said. “Soursoap?” Never heard of it.
Francesca was all ears and asked Koo-Koo Bird to spell it. Koo-Koo BIrd wasn’t sure how to spell it, but said that her sister-in-law, who was diagnosed with breast cancer, chose to use it instead of chemo after her bilateral mastectomy two years ago and bam! her cancer is gone!
Well. That is interesting. Could it be, I asked Koo-Koo Bird, that the mastectomy rid her sister-in-law of the cancer, rather than the soursoap?
No, no, no, Koo-Koo Bird assured me. It was the soursoap that CURED her sister-in-law’s CANCER. It works, she said, very softly. It really works.
Francesca asked Koo-Koo Bird again how to spell it, for she must have missed the press releases and news stories about this miracle drug. Koo-Koo Bird said oh, it’s not a drug…it’s a fruit.
Well, why didn’t you say so, Koo-Koo? A fruit that can CURE CANCER. That makes perfect sense.
Francesca whipped out her iPhone right then and there, mid-stride on the AMT, to google the wonder fruit. She couldn’t find a darn thing about the magical powers of a fruit to CURE CANCER; probably because Koo-Koo Bird didn’t know how to spell it.
No matter, because Koo-Koo Bird told us everything we need to know about it. Except how to spell it. It’s grown in Central and South America as well as some Asian countries. It’s related to the paw paw and the cherimoya, the latter of which I know about because I’ve seen it on “Chopped.” When cherimoya is one of the mystery-basket ingredients, the contestants either start sweating because they know that the seeds are poisonous, or they risk being chopped because they don’t know that the seeds are poisonous. Not wanting to interrupt, I did not share that little tidbit with Koo-Koo Bird.
Koo-Koo Bird spent a lot of time telling me how soursoap is better than chemo and how it changed her sister-in-law’s life. Her sister-in-law apparently was at death’s door with breast cancer, until she started eating and juicing the soursoap that was delivered to her via FedEx fresh off a tree in some unknown tropical locale. Francesca asked if the wonder fruit is available in a can, and Koo-Koo Bird said she doesn’t know, but even if it does, you shouldn’t eat or drink anything that comes from a can because canned goods can CAUSE CANCER. Koo-Koo Bird then asked me if I ate a lot of canned foods before I was diagnosed. Before I could answer, she quickly and softly listed all the other CAUSES of CANCER: red meat, bottled water, and Tupperware among them.
How is it that with all the research I personally have done–which is a pittance compared to the amount the Hubs has done–I missed the data on soursoap? Koo-Koo Bird says it’s thousands times more powerful than chemo, and that it does not kill the non-cancerous cells, like chemo does. How did I not know that a high-alkaline diet is more effective than pharmaceuticals in fighting cancer? Koo-Koo Bird said that the role of alkalinity in diet was proven to be a CURE for CANCER before World War II and that the man who realized this was in the running for the Nobel Prize, but because he was a Jew he missed out on the prize and the credit for CURING CANCER.
Wait a minute, I said. Are you telling me that there’s been a CURE for CANCER all these years, but the world at large doesn’t know about it because of anti-Semitism?? Koo-Koo Bird turned quite serious and said yes.
Then she went on to tell me that soursoap could also cure anything from diarrhea to migraines to bed-wetting.
Koo-Koo Bird was quite adamant that I look into this wonder fruit that can CURE CANCER. I finished my sprint on the AMT and patted myself on the back for not telling Koo-Koo Bird exactly what I think of people who feel compelled to tout a CURE for CANCER. I smiled politely, told her it was nice to meet her, and ran like hell. Well, actually I hobbled like hell because my newly repaired knee does not and likely will not ever endorse running.
I did not tell Koo-Koo Bird that until she herself had cancer, she could never know how insulting and annoying it is to have some random stranger quiz you on what you did wrong to CAUSE your CANCER. I did not tell her that hearing her crack-pot nonsense touted as fact made me want to punch her in the brain. I did not mention that those of us who’ve endured a cancer diagnosis neither need nor appreciate unsolicited advice. I did not tell Koo-Koo Bird to pull her head out of her arse. I did not call her a tool. I did not suggest that if there were a CURE for CANCER, we might have heard about it on the news or seen it online or read about it in a newspaper or magazine. I did not school Koo-Koo Bird on the fact that cancer is not one single disease, but a complex and multi-layered shitbox full of different diseases, and that even within one subgroup of cancer, like breast cancer, there are a million different combinations of factors and characteristics, so the idea of a CURE for CANCER is inherently misleading.
I thought about soursoap and Koo-Koo Bird for the rest of my workout. And when I got home, after peeling off my sopping-wet clothes and queing up the ice bags for yet another freezing session for my newly repaired knee, I took a little look-see into soursoap.
First thing I discovered is that it’s spelled soursop, not soursoap. I’ll have to tell Koo-Koo Bird next time I see her.
I’ll also have to tell her that while eating a varied diet and consuming foods like soursop that are high in vitamins B and C is a good idea in general, it’s not a panacea and it will not CURE CANCER.
Turns out that while soursop may have some overall health benefits, evidence of its cancer-curing properties having been tested on any actual humans is hard to find. In what may be a huge disappointment to Koo-Koo Bird, I didn’t spend much time researching it, so perhaps I missed the links to the clinical trials of soursop. In my limited research, I did find several references, such as one from Sloan-Kettering saying “human data are lacking” on soursop. There is plenty of data, however, showing that the fruit contains a heaping helping of annonacin, which has been shown in actual studies to lead to Parkinson’s when eaten in large amounts.
Well, I guess I’ll continue swallowing a Tamoxifen tablet every day for the next 3 years (minimum) and relying on CT-scans and MRIs instead of enjoying a bowl of soursop to CURE my CANCER.
Thanks for nothing, Koo-Koo Bird.
Good-bye, 4th grade! Adios, 7th grade!
It’s the last day of school in our little corner of the world, and there was much smiling and cavorting this morning in my house. Forget the Queen’s upcoming Jubilee or the Summer Olympics– there’s no celebration in the world that matches the unbridled joy of the last day of school. The entire summer, with all its laziness and promise, awaits.The official countdown has been on for days, of course, with my little darlings and our best-friend/teacher-at-the-jail-school quizzing each other constantly to make sure each one of the gleeful trio knows just how many days of imprisonment were left in the 2012 school year. They do this every year, snickering to themselves as we approach single-digit days left, while I roll my eyes and wonder how I’m going to amuse these monkeys all summer.
This is the first year that I haven’t approached the end of school with a bit of dread. I’m quite happy about that. Usually, I get a little panicky at the idea of 10 weeks of unscheduled sloth. I’m a creature of habit who likes a routine, and summer is anything but structured.
This year, however, I don’t mind the idea of unstructured time. In fact, it’s probably a really good thing — for all of us.
I’ll keep some of the same routines — swallowing my daily dose of Tamoxifen with my cup of coffee, watering plants, going to the gym — while letting the rest of them go. No alarm clocks other than a hungry little piggie requesting breakfast, no lunches to pack, no carpool to drive.
I’ll make my kids groan by insisting they spend a little time every day reading. Macy is finishing up this series, and we’ll soon be on the hunt for the next set of great books. Payton will pretend he’s annoyed by the daily reading time but will soon be swept away by this book or the scuttlebutt about whether there will be another installation in this series. Hopefully I’ll get some reading time in, too, as my list of books to read is long.
We’re kicking off the summer tonight with a celebration of with our sweet friends and their newly minted high school graduate. Corks will be flying and tissues will be passed as we toast this charming young lady who has nothing but great things ahead of her. Tomorrow will be yet another celebration as I turn a year older and celebrate the fact that I’m alive & kicking. It’ll be a total birthday weekend, followed by the first trip of the summer.
We’ll be heading to the Hill Country to enjoy (?) the sights & sounds of Schlitterbahn. My kids have been wanting to do this for years, but being the stick-in-the-mud-amusement-park-hating kind of mom that I am, I’ve always deferred. This year, it’s on! Thanks to some skillful peer pressure exerted by a certain wily trio of suburban at-home moms, my kids will finally get to experience the thrills & chills of this famed waterpark. The crowds! The onslaught of strangers’ kids! The vast bodies of communal water! Oh, joy.
In a couple of weeks my brother and his two kids will be heading to the great state of Texas from the Garden State. We’ll have five days of sun & fun and cousin immersion. What a great way to get the summer started! The day they leave, I leave for my annual trip with the Duke girls. This year we’re going back to Captiva Island, in Florida, for some kid-free R&R.
At some point in the near future we hope to head to Corpus Christi to see our dear friends’ new home. We miss them every day of the week, so getting to see their new house & pool and catch up on some long-overdue visiting will be fun, fun, fun.
Hopefully we’ll be making a return trip to the lovely Tyler, Texas, in July. Tyler is the site of the Texas East Little League All Stars tournament, to which my slugger’s team has earned a trip the last two years. Making it a three-peat would be a great way to close out the Little League experience.
We’ll be taking our annual trip to Salisbury Beach, of course. This trip is eagerly anticipated all year long, and once school ends, the countdown to the beach trip begins in earnest. Escaping the Texas heat and hanging on the beach with our second family is the best part of summer. I’ll be sure to post dispatches from the East Coast on how low the humidity is and how many lobsters we consume, don’t worry.
It’s shaping up to be a great summer.
The American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.
The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.
Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.
Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.
We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).
Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.
I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.
I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.
I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.
Webmd has an entire online community devoted to cancer. From the web site:
“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”
“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”
“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”