Girls Love MailPosted: May 29, 2013 Filed under: breast cancer | Tags: breast cancer and young women, breast cancer charities, getting mail, Girls Love Mail, how to help someone with cancer, sending cards 16 Comments
Throughout my long and arduous cancer “journey,” I was lucky enough to be on the receiving end of lots of mail. As much as I love email and texting for their speed and efficiency, there’s something just lovely about getting a piece of “real” mail. One friend in particular, a breast cancer survivor herself, sent me a card every week for a very long time, and seeing her familiar handwriting among the stack of junk mail made me smile every time (thanks, Jenny!). There were plenty of days in which that piece of mail was the highlight of an otherwise crummy day.
Imagine my joy when a commenter on this little blog alerted me to a wonderful effort for cancer patients called Girls Love Mail. Founded by fellow breast cancer survivor Gina Mulligan, GLM collects handwritten letters of encouragement and distributes them to new members of the pink ribbon club and those going through cancer treatment. It’s simple and brilliant: you write a note and mail it to GLM, where it goes into a special envelope and is passed on to someone whose day needs brightening.
I just sent my first two cards to GLM and signed up to send something every week. Check out the GLM website; there are sample letters and ideas on what to say. If you’re impatient like me and want to just get right to it, here’s the address: Girls Love Mail 2330 E. Bidwell Street, Suite 200
Folsom, California 95630. Drop a card or note in the mail; it’s such a simple thing but it has the power to make such a difference.
No easy choicePosted: May 22, 2013 Filed under: breast cancer, cancer fatigue | Tags: Angelina Jolie, Angelina Jolie preventative mastectomy, breast reconstruction, Dr Deanna Attai, lymphedema, The New York Times Well blog 15 Comments
I have a friend I met through this little blog. Like I, she lives in a suburb of this vast, sprawling city, although we are on completely opposite ends of the city — an hour’s drive apart. In this city of more than 2 million people, we both had the same surgeon for our reconstruction. She found this little blog while researching our shared doc. Small world, huh?
M and I have gotten to know each other in short order, as is the case when strangers are bound by the worst-case scenario. Instead of discovering that we both like to hike or collect Troll dolls or any number of commonalities that bring people together to forge a friendship, we’ve bonded over things like post-surgery infections, failed surgeries, broken promises and shattered dreams. We’ve traded war stories, vented frustrations and showed each other our scars — the ones on the outside, that is; the ones that can be seen by others.
Our most recent conversation was about how our reconstructive surgeries didn’t exactly turn out the way we expected. We’ve covered this topic before, and will likely cover it again. This most recent conversation coincided with this article in The New York Times following Angelina Jolie’s announcement that she had a prophylactic mastectomy. While Jolie has received a lot of praise, the article says that some breast surgeons worry that the general public will think that reconstruction following a mastectomy is “a quick and easy procedure” and that most people don’t fully understand what’s really involved. I certainly didn’t. I do now. Man, oh man, I do now.
The Times article elaborates: “For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they just have the implants removed.” While not all reconstruction involves implants, as in the case with M and me, that’s the most common version, and as long as one doesn’t suffer complications like M and I did, it’s a straightforward process.
It is not, however, a boob job. Roseann Valletti was interviewed for The Times article, and reports that “she is uncomfortable. All the time. ‘It feels like I’m wrapped up in duct tape,’ said Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction. They look terrific, to the eye, but it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”
Ah, yes…the “new normal.” M and I have discussed this “new normal.” A lot. And we’ve both come to the conclusion that we don’t like it. Not one bit. We’re so over the “look on the bright side” mentality that is forced upon us cancer patients, especially those of us “lucky” enough to have “the good kind” of cancer. Newsflash, people: there is no good kind. There are degrees of shittiness, but none of them is good.
M and I have learned the hard way that reconstruction after a mastectomy is not a simple thing, as some people may have inferred from Jolie’s experience. As stated in The Times: “Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result. A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.”
Running through that check list, I can say yes to bleeding, infection (not just risk of, but full-blown), scarring, persistent pain, and additional incisions. No anesthesia complications, no implants (ruptured, leaky or otherwise), or upper quarter dysfunction, although I certainly do have all of the symptoms listed, so perhaps I do have it and just don’t know it. Add to that list less-than-satisfactory aesthetic results, intermittent lymphedema, frustratingly painful scar tissue, divots in both armpits from lymph-node removal, unholy difficulty finding a bra that fits, PTSD, a near-uncontrollable aversion to antibiotics, and discomfort when reaching or stretching my arms.
Dr Deanna Attai, a mainstay in the online breast cancer community, was interviewed for The Times article and said, “We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant — we’re not at “Star Trek” medicine.”
Rats. I like the idea of just waving a magic wand and getting “Star Trek” medicine. Although, if there were such a magic wand to be waved, I’d wish not for “Star Trek” medicine, but for never having had breast cancer in the first place.
Patent pendingPosted: May 15, 2013 Filed under: breast cancer | Tags: BRACAnalysis, BRCA1, BRCA2, breast cancer in young women, gene patents, genetic risks and breast cancer, genetic sequencing, Myriad Genetics, Oncotype DX, Supreme Court 10 Comments
I got a phone call from Myriad Genetics the other day, in the middle of the day. I was hard at work and not pleased about being disturbed. I looked at the caller ID to ensure it wasn’t one of my kids’ schools calling to report a sudden onset of vomiting, saw that it was neither the elementary nor the middle school, and chose not to answer. I got back to work — in this case, carefully wrapping and packing my excessive collection of martini glasses, even though I’m not a martini drinker and have never caught on to the trendy flavored martinis. Why do I have all these glasses? When was the last time anyone in this house drank anything besides beer from a bottle or champagne from a flute? If I decide to ditch the martini glasses, do I still need to wrap each one before donating them? Why is this one glass so much bigger than the rest? Where did it come from, and why do I only have one this size?
See why I don’t have time to answer a call from Myriad Genetics?
Truth be told, I figured in the millisecond of conscious thought I devoted to that readout on the caller ID that someone from Myriad Genetics must be calling to collect on a medical bill from months ago. At this point in my cancer “journey,” I have had so many tests and receive so many bills from different labs, physician groups, and hospital management companies, I would need a manager to keep them all straight. In the early days of this “journey,” my health insurance company provided a patient advocate, who acted as my manager. When I received a bill I didn’t recognize, I could call her and she would do the leg work — both with my insurance company and with the vendor billing me — to determine what I really owed and why it wasn’t fully covered. I have a 3-ring binder that is stuffed full, I mean completely full, of copies of medical bills. That binder tells an evolutionary story about my cancer “journey” from the first days of diagnosis in which I set up carefully labeled dividers to contain each category of my cancer: notes from doctors’ appointments, research, copies of test results, and a motley assortment of insurance clobber. In the days of feeling good, I would carefully note at the top of a medical bill the details of that particular transaction: the date I paid it, or the contents of the conversation with the patient advocate. In the dark days of being sick, sick, sick from the post-mastectomy infection, the correspondence is shoved helter-skelter into the notebook, crumpled and noteless. These days, doctors’ appointments and test results are few and far between, which is a good thing since the binder is so full. There is no room in the inn. My choices are continue stuffing stuff into the overly full binder, or start a new one. I don’t like either option.
Back to Myriad Genetics.
I didn’t give the phone call another thought; my thoughts were quite consumed with the martini glass collection, and my brain is rather full with the ginormous list of tasks required when moving house. I didn’t think about Myriad Genetics or the genome testing involved in the cancer “journey” until the story broke about Angelina Jolie’s preventative mastectomy. In her eloquent New York Times article, Jolie mentions the costliness of the genome testing she underwent that detected her risk factor (in her case, an 87 percent chance) of developing breast cancer and that the cost is a barrier for many women. I remember taking the Oncotype test to expose the exact characteristics of my cancer. My breast surgeon ordered the test so that we could better determine exactly what we were dealing with and decide on the best treatment, yet my insurance company denied payment because they don’t cover genetic testing. I don’t recall the exact cost of the Oncotype, and I’ve already packed my overstuffed binder, but it was definitely several thousand dollars. However, the cost of the test was a pittance compared to the cost of the chemo that two oncologists recommended before I consulted a third, Oncotype results in hand, who said chemo wasn’t necessary and in fact, would cause more harm than good. That nasty post-mastectomy infection was the final nail in the proposed chemo’s coffin; the Oncotype cost some stacks but it saved my insurance company even more.
Which brings us back to Angelina Jolie and her subtle yet effective reference to the cost of such tests and the disparity between who can and cannot afford such tests. I also had the BRCA test that Jolie subtly yet effectively mentions, and remember thinking, wow — $3,000 for swishing Scope around in my mouth then spitting the minty saliva into a collection cup? And yet that $3,000 test determined that I do not carry the gene that predisposes me — and my daughter — to breast and ovarian cancers. Jolie’s BRCA test revealed that she does carry the gene, hence her preventative mastectomy.
Why does any of this matter? Well, beyond the age-old debate about the haves and the have-nots in health care, of course. That’s enough of a reason. Equally important,though, is the fact that Myriad Genetics has patented the BRCA1 and BRCA2 genes. They own the genes, essentially, which gives them a monopoly on testing. Therein lies the problem. With a monopoly, other scientists and other companies can’t get in on the gene testing, which shuts the door on any possibility of discovering better and less-expensive testing methods. While Myriad Genetics needs to make a buck, just like every other company, the stakes are high when we’re talking about shutting out many customers who may not know about their genetic risk of cancer until it’s too late.
The Los Angeles Times described the situation quite succinctly:
“At issue is whether a human gene sequence can be patented. That’s the broad question. The two specific sequences patented by Myriad — BRCA1 and BRCA2 — are genes that suppress tumors. A small percentage of women have defective copies of those genes, and they are extremely likely to develop a virulent form of breast cancer. They also face a higher-than-average risk of ovarian cancer. Myriad’s patents give it an unusual degree of control over researching and testing for BRCA defects. Only Myriad can legally isolate the BRCA1 and 2 sequences. In the United States, that means only Myriad’s lab can conduct a full sequencing test to check a patient for the innumerable possible mutations of those genes.”
Should Myriad Genetics be allowed to essentially own these genes? That’s up to the Supreme Court to decide. The ruling is expected next month, and the debate will likely be heated before, during, and after. I’ll keep ya posted.
EndurancePosted: May 12, 2013 Filed under: breast cancer, cancer fatigue 10 Comments
Have you ever cried so much that your eyes seemed like they would fall right out of their sockets? Have you ever wept so much that every inhalation felt like you were sniffing ground-up glass? Have you ever bawled long enough that your eyes were tiny yet swollen slits and your lungs hurt every time air entered or exited them? Have you ever hurt so deeply and so completely that you seriously thought you’ll never recover? Have you ever wanted crawl into your bed right now, in the midst of this swirling inferno of misery, and never, ever get up?
Don’t call or text or ring the doorbell because there will be no answer. None.
At some point in this future I may find the strength to plaster on an insincere smile and reply “Fine” when asked the inevitable “How was your Mother’s Day?” But I won’t mean it. I won’t feel it.
I just won’t.
Don’t bother telling me I have so much to be grateful for. Don’t insult me by telling me to look on the bright side. Don’t waste my time pointing out all the good in my life.
I can endure the long-distance slog that is facing a cancer diagnosis. I’ve never been one to deceive myself when reality stared me in the face.
I can handle hearing the worst possible news and do it with an inquisitive look on my face.
I can hear the worst-possible news with dignity and without falling apart (at least not in public).
I can face everyone’s worst nightmare without ever once whimpering, crying, or losing it.
I can digest the worst-case scenario with a straight back and a strong will.
I can formulate a Plan-B after Plan-A dissolves like the pages in a generations-old photo album, then start working on Plan C as soon as it becomes apparent that Plan B is hopeless, too.
I can dot every “i” and cross every “t” and still be shocked when there’s no pay-off for playing by the rules.
I can handle more stress than I ever before imagined, and I can get through more harrowing ordeals than I ever would have expected.
I can endure worse pain than that required to bring a new life into the world.
I can take it when I’m told again & again that no one anticipated the scenario that has become my reality.
I can suck it up and grit my teeth through repeated instances of “no one saw this coming.”
I can make it thorough the extreme mental challenges that follow a worst-case-scenario physical test.
I can serve as the poster child for “who in the hell has that kind of terrible bad luck?”
I can thrive amidst the “everything that could go wrong did go wrong” scene.
I can be the one that even the oddsmaker wouldn’t have predicted–and not in a big-winner way.
But pit me barefoot against a goat-head thorn and I may just crumble. Ask me to endure that sharp stick of brittle thorn into the tender flesh between my toes, and I may not make it.
That thorn may just do me in.
Rules? What rules?Posted: May 8, 2013 Filed under: Uncategorized | Tags: ain't nobody got time for that, angry baby meme, Mike Hammer Allstate insurance, the rules don't apply to me, uninsured motorists 6 Comments
Last month I got rear-ended. Bummer.
It was a beautiful day, I had my family in the car with the top down; we had just come from signing the papers on our new house and were euphoric at the idea of building our “forever home.” The euphoria prevailed even as we hurried from the builder’s sales office back toward home to get my #1 son ready for baseball practice. As we were short on time, we decided to run through Chick Fil A to grab him some dinner before practice. As I idled next to oncoming traffic in the strip center, waiting to turn left into Chick Fil A, I saw a big pickup turning out of the grocery store parking area to get in line behind me. The driver of the truck must have taken her eyes off the road for a moment, because BAM! she hit me.
After the initial shock passed, we issued a collective groan at the interruption to our idyllic day. Mr #1 son fretted about whether his Chick Fil A was still on the table; fast food is a rarity in our lives, and that boy has a major soft spot for all junk foods. I handed him some cash and he walked across the parking lot to procure his feast while we exchanged information with the lady in the truck.
Her first reaction upon getting out of her truck was to announce that I didn’t have my turn signal on. I shut her down speedy quick: I most certainly did have my turn signal on (which she would know had she not taken her eyes off the road!), and it makes no matter because the person who hits another car from behind is at fault. Period. She piped down after that assertion and switched gears from combative to contrite.
She produced an insurance card and we copied down the details. As she pulled away from the scene of the crime, we took down her license plate number, just in case. While I certainly like to believe the best in people, even total strangers who ram the back of my car in a parking lot, you never know.
The “you never know” part took a starring role in this suburban drama. When I contacted her insurance company, I received the dreaded news: her policy is no longer valid. She’s uninsured.
It gets better: I of course have uninsured motorists coverage on my policy, but there’s a $250 deductible, and it rubbed me the wrong way, big time, to have to pay money to cover someone else’s damage. Add to that the fact that we just bought a house, I mean literally, and the idea of spending money to cover some irresponsible bad driver just made me mad. My insurance agent, who is a rock star, assured me that we would find her and make this right.
You may have heard this about me — I have a whacked-out sense of justice. It irks me to no end when things don’t work the way they should; add to my list of annoyances: irresponsible people who drive around in a big-ass truck without insurance.
Did I mention that my rock-star insurance agent is named Mike Hammer? For real. In 1994 we chose him out of the phone book, way back when phone books were relevant, because of his name. All these years later, we likely could have found a better deal, maybe from that cute little gecko, but Mike has always given us top-notch service and I believe in loyalty (again, whacked-out sense of justice). I’m so glad we never strayed from Mike Hammer, because he put on his private-eye hat and found the lady who hit my car. With no valid insurance policy, her insurance company couldn’t track her down, and her license plate number didn’t come up in the system either. I’m not going to accuse her of having stolen plates, but in addition to letting her insurance lag, she must have let her car registration lag as well.
He called her up and told her that she must have mistakenly given me the wrong policy, because the information she provided is invalid. She assured him that she does indeed have insurance, and when he told her he’d gladly hold on while she went to get the real insurance card, she said she didn’t have it handy. He said no worries, I’ll hang on while you go out to the garage and get the card out of your glovebox. Cue the radio silence.
No need to hold on, Mike, because there is no valid card in the glovebox. Miss Missy in her big-ass truck has no insurance. Did she knowingly provide me with bogus information at the scene? Again, I’d like to believe the best in people, but she’s making it pretty tough.
She assured Mike Hammer that she would call him back with the correct policy information, and he said good deal, that’s a relief because my client sustained some significant damage and needs to get her car fixed.
I know y’all will be shocked to learn that Miss Missy has yet to call Mike Hammer with that information.
I did a little sleuthing myself and found out where Miss Missy lives. I’m sorely tempted to show up on her doorstep and demand restitution, but considering we do have the right to concealed handguns in the Great State of Texas, I’m going to refrain.
Instead, I will go get an estimate on the damage to my car, call Mike Hammer with the amount, and let him call her again to ask when we can expect the cashier’s check for the damage.
Wouldn’t it just be so much easier if everyone followed the rules — the law, in this case — and carried valid auto insurance?
But apparently the rules — and the law — do not apply to Miss Missy, who has no problem driving around whacking other cars in her big-ass truck. Perhaps that’s a good thing, though: she should have plenty of money to pay for my car repair since she’s not spending one penny on car insurance or registration.
I hope AJ has unpluggedPosted: May 17, 2013 | Author: pinkunderbelly | Filed under: breast cancer | Tags: Angelina Jolie, bilateral mastectomy, BRCA, breast cancer in young women, cancer in young women, criticism for mastectomy, genetic risk and breast cancer, negative comments to cancer patients, New York Times op-ed piece, prophylactic mastectomy | 16 Comments
The backlash surrounding Angelina Jolie’s announcement that she has a prophylactic bilateral mastectomy is a lot of things: stunning (not in the good way), discouraging, upsetting, disgusting, rage-inducing, sad…the list is long.
I keep telling myself to just stop reading the negative headlines and judgmental comments, but I can’t. I’m drawn to them like a thirsty girl to a sparkling glass of bubbly.
The comments range from stupid to mean to crazy. This crackpot goes way out on a limb with a conspiracy theory (thanks to my friend Katie for alerting all of us to this blood-pressure raiser). A couple of gems from Mike Adams, who calls himself the Health Ranger, but whom I’m calling Senor Crazy-Pants:
According to Senor Crazy-Pants, we could avoid cancer with a healthy diet and lifestyle. So it’s my fault that I got cancer, even though I don’t eat meat, choose organic, strive for a plant-based diet, and avoid processed foods and environmental chemicals.
“This is no less than a media stunt to gain more market share to stay up high on the A list.” Right. As if her every move isn’t chronicled by papparazzi. Going to the grocery store is People-worthy news for her.
“RIP Angie’s boobs. You had options, dummy!” And what options would those be? Living in fear? Wondering if this year’s well-woman exam would turn up a lump? Hide under the bed and hope it all blows over? Who’s the dummy here?
“Angie cuts off her boobs, Brad’s gonna be f****** the nanny!” Yes, because nice boobs are the only reason a man would want to be intimate with a woman.
“What a waste of a bangin’ set of boobies.” The waste here is that this commenter is alive and breathing air while Angelina’s mother is dead from ovarian cancer.
“Angelina Jolie’s boobs have been removed…I’ll never smile again.” I’ll give this tweeter partial credit for being creative, but that’s it.
“Because you can never be too careful these days, with the cancer industry scaring women half to death at every opportunity. ‘My breasts might murder me!’ seems to be the slogan of many women these days, all of whom are victims of outrageous cancer industry propaganda and fear mongering.” Damn that cancer industry and its propaganda and fear mongering!
“Being an empowered woman doesn’t mean cutting off your breasts and aborting live babies — even though both of these things are often celebrated by delusional women’s groups. Being an empowered woman means protecting your health, your body and your womanhood by honoring and respecting your body, not maiming it.” Damn those delusional women’s groups. And I guess I missed the news story that Jolie had a late-term abortion as well as a mastectomy. Were they at the same time?? Did the “highly unprofessional” surgeon referred to in a previous comment perform the abortion, too?? Is that covered by insurance??
One of my fellow bloggers had a much more useful comment. When I read it, I copied it and pasted it, but forgot to attribute it, and now I can’t remember who wrote it. Apologies, ladies. If this is yours, please tell me so in the comments section so I can thank you properly. “There are no ‘good’ choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.”
Truer words are seldom spoken (or typed). While I’m a proponent of freedom of speech in general, I wish there were a rule that prevented idiots and mean-spirited fools from spouting off on something with as much gravitas as Jolie’s decision. I wish there were a policy stating “If you haven’t had cancer, your voice will not be heard.” I wish there were an amendment upholding the right of those of us who’ve lost a beloved member of our tribe to speak about the pain and grief and unfillable hole left by that person’s death. I wish there were a mute button to be used when people spew garbage about a situation in which they know nothing.
I really wish that everyone who takes the time to render their judgement and register their opinion on a total stranger’s wrenching choice would read Jackie’s post on this heated topic:
thank you, google images, for providing such lovely graphics.
sorry about the formatting; not sure what’s up with that.