No end to the drug therapy
Posted: July 24, 2014 Filed under: Uncategorized | Tags: da Vinci hysterectomy, femara, infection after mastectomy, micobacterium fortuitum, nosocomial infection, psychological effects of breast cancer, side effects of femara, side effects of tamoxifen, tamoxifen, tamoxifen vs femara 14 CommentsMisguided 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.
It’s never over.
Getting the run-around
Posted: June 5, 2014 Filed under: Uncategorized | Tags: ATLAS study of tamoxifen, Benjamin Button, Bruce Banner, health insurance battles, Hulk smash, Oncotype DX, patient advocate, quitting tamoxifen, side effects of tamoxifen, tamoxifen 8 CommentsAs anyone who has faced long-term illness or disease will tell you, wading through the medical bills can be a full-time job.
Luckily, I don’t have nearly as many bills to wade through these days. However, in Cancerland, the next expensive test and big bill can be — and usually is — right around the corner. The latest for me was a vaginal ultrasound in March to determine if my ovaries are up to no good after coming off tamoxifen. Yes, that’s right, a vaginal ultrasound. Don’t be jealous. It’s yet another perk for those of us in Cancerland.
I struggled long and hard with tamoxifen. I’ve written about my complicated relationship with the drug many times; most recently about the T-rage I had been experiencing. Like poor Bruce Banner, I was one Hulk smash away from wrecking something for good, and I didn’t like that. I also had serious bone pain that got worse instead of better. I felt as if I were aging at a scary-fast pace. While the bone pain and aging were unpleasant, they weren’t deal-breakers. The T-rage, however, was a deal-breaker.
The T-rage was bad, really bad, but even worse is the increased risk of uterine cancer. For someone with a complicated family history of reproductive cancers, uterine cancer isn’t something I’m willing to risk. I’m not looking for a three-peat here; melanoma in 2006 and breast cancer in 2010 are more than enough for me. Throw in tamoxifen’s potential to cause liver as well and I’m downright spooked (with my affinity for champagne, my liver is likely limping along as it is. No need to tax it any more than my bubbly habit already does.)
I broke up with tamoxifen last fall. After three years, the side-effects were piling up like cars on Houston’s Southwest Freeway during rush hour. As much as I would have loved to have made it to the 5-year mark with Tamoxifen, it was unlikely; even more unlikely was being on the drug for 10 years, as is the current recommendation for pre-menopausal women.
Whether to continue taking the drug was a very difficult decision, and one with which I struggled. In the end, it came down to quality of life. Cancer and its far-reaching tentacles had already taken so much from me; I wasn’t willing to give up the slight hold I had on my sanity. It is a very personal decision. Much like the decisions that go along with surgery options and adjuvant treatments, what’s right for me might not be what’s best for the next person in Cancerland.
I’m far from alone in my decision to stop taking tamoxifen, however. This study of nearly 9,000 women with early-stage breast cancer revealed that only 49 percent made it all the way through five years. Younger women were more likely to quit their treatment, perhaps because of the far-reaching side-effects that come along with the drug.
As nasty as tamoxifen can be, just stopping it doesn’t mean the trouble ends. Because the estrogen my ovaries produce is no longer blocked by tamoxifen, the potential for that estrogen to feed hungry cancer cells is once again a very real possibility. The next-best option is having my ovaries removed, hence, the ultrasound in March that kicked off the latest round of harassment by my insurance company.
Yes, I am grateful to have health insurance and I am very sympathetic toward cancer patients who do not. The one thing that can make cancer more crap-tastic is to have to worry about going broke because of it. Being stressed about money is no fun. Add in all the hype about stress contributing to cancer, and the crap-tastic scenario becomes even crappier.
As was the phone call I received last week from the hospital where I had the vaginal ultrasound to determine what, if anything, was going on in my possibly ill-behaving netherregion. Here’s how it went down:
Her: “Hello, this is YaddaYadda So-and-So with the hospital you had your ultrasound at on March 20, 2014. I’m calling to collect the $508.40 you owe for that ultrasound.”
Me: (silently, to myself: Do not correct her horrible grammar. Let.It. Go. “at on” is not the worst thing a person can say. Even a person trying to collect money.) “Oh, hi YaddaYadda So-and-So.”
Her: “How are you today?”
Me: “Feeling like I’m about to become $508 poorer.”
Her: (silence)
Me: “hello?”
Her: “Yes, I am calling to collect $508.40.”
Me: “I have no idea to what you are referring. I have not received a bill for my portion of the ultrasound.”
Her: “So you did have an ultrasound on March 20, 2014?”
Me: “Apparently so, otherwise I cannot fathom why we would be having this conversation.”
Her: (more silence)
Her: “When can we expect payment for this unpaid service?”
Me: “When can I expect to see a bill for this service?”
Her: “It will be mailed out this weekend.”
Me: “So, you’re calling me to ask me to pay a bill that I have yet to receive?”
Her: “Yes ma’am. What kind of payment can you give me today?”
Me: “How about we wait on that? Maybe until I actually receive a bill?”
Her: “Ok, but when can we expect to receive your payment?”
Me: “Ummm, how about after I receive a bill?”
Her: “When do you think that will be?”
Me: “Am I being punked? Is this conversation for real?”
Her: (silence)
Me: “Here’s how it’s going to work: once I get a bill I will review the bill. Then I will check with my insurance company. Then I will pay whatever I owe. However, nothing is going to happen until I get a bill.”
Her: “Ok. Thank you for choosing our hospital. Is there anything else I can help you with?”
Me: “I’m not sure you’ve helped me with anything yet, so “anything else” is not likely. But thanks for asking”
Her: “Good-bye.”
The very next day, I get another call from another person in the billing department at my hospital. She, too, wanted to know when they can expect the $508.40 I owe. I told her, quite gently, that I have yet to receive a bill and that I had a conversation to the same effect yesterday, with her colleague. She seemed as dismayed as her colleague that I wasn’t ready to fork over $508.40 for a service for which I’d yet to see a bill.
Two days later, still no bill, but yet another phone call from yet another person in the billing department. I told her that she was the third person to call about a bill I had yet to see. I asked her to please put a note in my file that says Do Not Call Me Until the Bill Has Been Mailed. And Then Wait a Couple More Days to Give Me Time to Go to the Mailbox and to Read Over the Bill.
At this point, my patience had worn rather thin.
After doing some investigating with my insurance company, I learned that the claim had yet to be filed. I duly called the billing office of the hospital to report my finding. I left a voice message stating my business; I suppose all the billing representatives were busy on other lines, cold-calling customers asking for payments for bills not yet process, mailed, or received. I felt comfortable ignoring the two voice mails the billing department left me while I waited for the bill to arrive.
Today I got a call from yet another billing representative, telling me that they got my voice mail and were calling me back to take my payment. Here’s how that convo went:
Her: “Yes, I’m wondering how you’d like to pay the $508.40 owed on your account.”
Me: “You mean the $508.40 about which I left a voice mail, saying I checked with my insurance company and no claim for that service on that day by this hospital has been submitted?”
Her: “Yes ma’am. How would you like to pay?”
Me: (silence)
Her: “May I place you on hold, to verify that the claim has been processed?”
Me: “You call me, then want to put me on hold? So you can check to see if there’s a reason for you to have called me?”
Her: “Uh, yes. Ma’am.”
Me: (sigh) “Ok.”
Her: “Ma’am, we show that your insurance company just submitted payment for $1249.10 today. They just paid today.”
Me: “Ok. Great. So we’re done here?”
Her: “Um, I think so, but let me double check. May I place you on hold?”
Me: (sigh) “Ok.”
Her: “Yes ma’am, your insurance company paid the $1249.10. Today. They paid today. Just now. I don’t see that you owe any deductible. But, um. How would you like to pay your portion?”
Me: “My portion of what? You just said I don’t owe any deductible.”
Her: “Um, that’s right. I don’t think you owe anything at all”
Me: “So we’re done here?”
Her: ” Yes. Is there anything else I can help you with today?”
Me: (sigh)
Here’s what I want to know: does the hospital make such phone calls soliciting payment on purpose, hoping the recipient of the call will just pay whatever amount they’re told, right there over the phone? Or is the billing process complicated enough to warrant the kind of confusion that results in a customer receiving multiple phone calls asking for payment for a bill that’s yet to be received?
Or was I being punked?
T-rage
Posted: September 26, 2013 Filed under: cancer fatigue, drugs | Tags: anxiety, ATLAS study of tamoxifen, ATLAS trial, road rage, roid rage, side effects of tamoxifen, steroid rage, tamoxifen, Tamoxifen side effects 22 CommentsI 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?
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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.
paperspencils.com
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.
medulous.com
Sweat, sweat, and more sweat. Like the clown car at the circus, the sweat just keeps coming.
drybabe.com
Dry skin: Why can’t all that sweat moisturize?
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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.
yourfitnesspoint.com
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?
butyoudontlooksick.com
Trouble concentrating: Ditto.
Sleeplessness: because the previous characters don’t wreak enough havoc, now there’s no escaping them.
soberfornow.wordpress.com
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.
trialx.com
Irritability. Major irritability. Sometimes I can barely stand myself. It is ugly.
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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.
WEGO HAWMC
Posted: April 2, 2013 Filed under: breast cancer, menopause | Tags: breast cancer, breast cancer awareness, HAWMC, tamoxifen, Tamoxifen side effects, WEGO Health 5 Comments
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.
Today’s prompt:
Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition/activism?
Some fruity advice
Posted: February 5, 2013 Filed under: breast cancer, cancer fatigue | Tags: 10 years of tamoxifen, AMT cardio machine, annonacin and Parkinson's, ATLAS study of tamoxifen, cherimoya, Chopped, Food Network, National Cancer Act of 1971, Precor AMT, Richard Nixon, soursoap, tamoxifen, War on Cancer 33 CommentsBreaking news: a woman at my gym just told me about a CURE for CANCER.
Wow!
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.
googleimages.com
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.
Oh boy.
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.
Rats.
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.
Rats.
Thanks for nothing, Koo-Koo Bird.
School’s out!
Posted: May 31, 2012 Filed under: Uncategorized | Tags: James Patterson, Queen's Jubilee, Rick Riordian, summer reading lists, summer vacation, tamoxifen, The Witch & Wizard series 13 CommentsGood-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.
Blog Party, APA style
Posted: May 16, 2012 Filed under: cancer fatigue, drugs, menopause | Tags: American Psychological Association, antidepressants, antidepressants used for conditions other than depression, beta blockers, Dana Jennings, insulin, menopause, Oncotype DX, psychological effects of cancer, PTSD from cancer, statins, stigma and depression, tamoxifen 19 CommentsThe 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.”
Tamoxifen and kids
Posted: March 5, 2012 Filed under: breast cancer, drugs, menopause | Tags: adjuvant therapy, CVS, estrogen, Extreme Home Makeover, National Cancer Institute, philadelphia college of pharmacy, presecription drug mix-up, recurrence prevention, side effects of tamoxifen, tamoxifen, Tamoxifen side effects 9 CommentsDid y’all hear about this? A Trenton, New Jersey CVS pharmacy accidentally dispensed tamoxifenn instead of pediatric fluoride pills.
abcnews.com
Yikes.
I love CVS for the generous donations they made to Extreme Home Makeover, the feel-good show that used to be on TV. I searched to find a source to tell me how much CVS donated via the show over the years, but my patience wore off before I could find an answer. Suffice to say it’s a lot.
When I read about the drug mix-up, I cringed. The estimate is that as many as 50 kids received Tamoxifen instead of their chewable fluoride pills between December 2010 and February of this year. CVS hopes that any one of those 50 kids who tried to chew a tamoxifen pill instead of the usual fluoride pill would notice that something was different. Daniel Hussar, who teaches at the Philadelphia College of Pharmacy, was quoted as saying that because tamoxifen is meant to be swallowed, no effort is made to make it taste good, as is the case with chewable fluoride. He says a child who tried to chew tamoxifen would likely “want to spit it out or tell his parents it tastes bad.”
If they didn’t notice the taste, I wonder if they noticed the side effects. I pity the parent who has to deal with a moody, hot-flashing kid.
Because tamoxifen’s job is to block estrogen and prevent breast-cancer recurrences, it can monkey with one’s hormones. I’ve written about this very topic. More than once. I feel pretty qualified to complain about the side effects of tamoxifen, even though I know it’s an integral player in the recurrence-prevention game. I know well that this drug is my best shot for keeping that infernal cancer beast from showing its ugly mug around here again. The National Cancer Institute says explains it, “As adjuvant therapy (treatment given after the primary treatment to increase the chances of a cure), tamoxifen helps prevent the original breast cancer from returning and also helps prevent the development of new cancers in the other breast. As treatment for metastatic breast cancer, the drug slows or stops the growth of cancer cells that are present in the body.” Great right? Yes. Definitely. But, as we all know, there is no free lunch, and tamoxifen comes with some heavy side effects.
At the risk of sounding like one of those annoying commercials that lists every side effect under the sun, here goes: increased chance of blood clots, increased risk of strokes, development of uterine cancer, and cataracts. But wait, there’s more: menopause-like symptoms such as mood swings, hot flashes, joint pain, and leg cramps. Not listed is the accelerated aging characterized by dry skin, loss of collagen, brown spots (aka “age spots”), and thinning hair. Because losing my rack isn’t enough, I also got thrown into chemically-induced menopause and became a brittle old woman decades before my time.
Not that I’m complaining.
Instead, I’m looking on the bright side: when I pop the little white pill every morning, I know exactly what I’m getting. No surprises. No mistaking a chewable fluoride pill for a powerful anti-cancer weapon.
Thinking about it
Posted: February 9, 2012 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, cancer is not a gift, cancer recurrence, metastasis, psychological effects of cancer, PTSD, Rihanna, tamoxifen 8 CommentsI ran into a friend yesterday who I hadn’t seen in a while and she asked me how I’m doing. Great, I replied, just great. And in that moment, I truly was. I’d just finished a kick-ass workout and had a few minutes to watch my team play tennis against one of our old rivals. I had a bye this week so I could enjoy the two matches going on side-by-side, plus the gaggle of tennis hens flocked in between courts to visit. Those of you living in colder climates would scoff at our gaggle, in the bright sunshine and temps in the low 50s I’d say, bundled up like Texans tend to do when it gets “cold.” There were tights under tennis skirts, gloves, hoods pulled tight around sunglassed faces, and blankets wrapped snugly. The wind was downright nippy, after all. Good thing we have such fulfilling fellowship to help keep us warm.
Anyhoo, I had a precious little chunk of time after the gym and before picking up my carpool for early-dismissal day, and I was surrounded by friends.
Great. Just great.
Big smile.
Despite the sadness that’s permeated this week with the deaths of Rachel and Susan (and the flurry of blog posts, Facebook posts, articles, Rachel’s beautiful obituary, and personal stories about Susan like this), I’m great. My schedule is full but not overwhelming (just the way I like it). My laundry is done (if not folded and put away). My closet is clean and tidy (I can’t think when clothes are draped and shoes are jumbled everywhere). I’m great.
My friend was glad to hear that I’m great, then asked, “How do you not think about ‘it’ all the time?”
By “it” of course she meant cancer. And at that moment, I wasn’t thinking about “it.”
I thought for a minute before answering. This is an important question.
How do you not think about it all the time? While I don’t think about it all the time, cancer does indeed hover around me an awful lot. Sometimes in the foreground, front & center, and sometimes in the background, inching ever closer and waiting for any opportunity to swoop in and crash the party.
I explained to my friend that for me, it’s like this: you know that feeling when you get caught in the rain, or maybe thrown in a pool, and it’s a while before you can change clothes? That feeling of shirt, pants, and undies plastered to your skin? Heavy and uncomfortable, but not debilitating? It’s like that.
When fully clothed and drenched, one can still function. One can remain drenched for a long period of time and still get through the details of one’s day. The wet clothes cling and maybe even chafe a little, but one can breathe. One can move, onward and upward and from the rainy parking lot to the car, or from the pool into the house. Perhaps one’s heart rate jumps a bit as the adrenaline rushes, and maybe one even gets a little short of breath from the shock of the deluge of water or the careening into the pool, but one is still fully functional.
Myriad reminders of cancer assault me every day. Some reminders are overt, like the news of Rachel’s and Susan’s deaths on Monday, or more covert, like the strange dichotomy of my life’s timeline: events that happened before or after cancer. Reminders can be lasting memories, like the chalkboard sign my favorite girl drew declaring “Mom is feeling better!” a day after I was sprung from the hospital after my mastectomy. They can also be tactile, like the weight of the fleece blanket I used during each hospital visit settling atop my weary body.
The visual reminders pack the most punch: the battle lines of scars that crisscross my body, of course. The prescription bottle of tamoxifen that has a long-term lease on my kitchen counter. The drawer full of bras in various sizes, from the totally flat-chested “it’s an utter waste of money” bras to the “I sure thought this would work for the finished product” bras. The humongous stack of EOBs and bills from the various doctors: breast surgeon, anesthesiologist, infectious disease specialist, oncologist, OB-GYN, lymphedema/massage specialist, GYN oncologist.
Cancer changes people. Inside and out. In ways too numerous to count. In ways both miniscule and grand. Not all the changes are bad, mind, but know this: you will never read one word on this blog, now or ever, about cancer being a gift. If cancer is a gift, I sure as hell hope there’s a gift receipt, because I’m going to return it. And if you’re the sort of person who thinks cancer is a gift, you are most definitely not invited to the party.
Cancer encourages weird thoughts. Because of cancer, simple things like hearing Rihanna sing about love in a hopeless place makes me think not of star-crossed lovers in the projects, but the compassion of friends during life’s most difficult period.
Cancer panics me into thinking that any little twinge is a metastasis. Headache? My cancer has spread to my brain. Hip pain? Oh, mercy, it’s in my bones. Cramps? Ovarian or uterine secondary tumors. Just a couple days ago, I tweaked a muscle on my left side, in between my ribs. For an entire day, I couldn’t inhale fully; taking a deep breath hurt, and my first thought wasn’t the rational realization that I should have gotten a stool to reach the shelf in the laundry room, but the irrational thought that the teeny spot on my lung–most likely a byproduct of having pneumonia as a child–has grown into a tumor so big I can’t breathe.
Cancer elicits a full range of feelings and emotions. There’s exhaustion, anger, gratitude, fear, confusion, relief, distrust, joy, anxiety, and sadness. Sometimes all in one day. There are times in which I’m going about my non-cancer-related business and a wellspring of emotion surges up out of nowhere. My brain must be on constant overdrive. Sometimes the wellspring of emotion is bad and overwhelming, like the thoughts of recurrence. But sometimes it’s good, too, like the happiness humming through my heart when my septuagenarian friend at the gym showed me a photo on his iPhone of his golden retriever, Abby, covered up to her neck in his bed. Why does my heart sing at the obvious love this man has for his dog? Because cancer reminds me that life is fleeting and the good times aren’t guaranteed, so savor the small things. Cancer reminds me to be present in the moment, for you never know when idle chit-chat by the treadmill will flow into a display so sweet in its simplicity, yet so rich in its meaning. That Mr McKay loves Abby enough to tuck her into his bed with a down comforter is rich. That he chose to share that with me is even richer, and that I slowed down enough to engage him, instead of rushing off to my next to-do item, is the best part of all. In my pre-cancer life, I would have been in a rush to get out the door after my workout. In my post-cancer life, I know to slow down, listen to the people around me, and drink in their life experiences. While the weird thoughts that cancer brings get more attention, the beneficial thoughts are there, too.
I had a smile on my face all day thinking of Abby and her besotted owner. No doubt my thoughts will soon run amok again, imagining all manner of cancer-related craziness instead of lingering on the pure sweetness of a man and his beloved dog. Before long, I’ll again feel the soggy weight of wet clothes on my back as thoughts of cancer snake their way through the dense thicket of neurons in my brain.
The Pink Underbelly 