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.
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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.
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Sweat, sweat, and more sweat. Like the clown car at the circus, the sweat just keeps coming.
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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.
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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.
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.
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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.
The Pink Underbelly 