"the man" taketh away...
I
have
said it before, and I'll say it again: the United States of America government doesn't care about sick people.
Eric and I went to have our taxes done this morning. In light of the massive amount of medical expenses that we had in 2005, we were expecting to get most, if not all, of our taxes refunded to us.
No such luck...in fact, we have to pay in. It turns out that in Hawaii and Maryland, medical expenses are a standard itemized deduction, not a separate category unto itself. Unless your medical expenses top the standard deductions for a married couple ($10K for the 2005 tax year) in these states and several others, it basically doesn't count. (Note: our tax preparer did say that in some states, medical expenses are a stand-alone deduction, that is, you can claim the standard deduction of $10,000, plus whatever you paid in medical bills as an additional deduction. Talk to a tax professional to see what the specific rules are for your state.)
This means that you could have medical expenses of up to $9,999.99, and it DOESN'T COUNT. Ours thankfully were not that high (about $6K) but it still sucks. The financial ramifications of a long-term illness, even when you have insurance (as we do), are often devastating. Four months after leaving Johns Hopkins, we are still sending them several hundred dollars a month, and it's not like we are made of money.
And now we have to come up with extra money for a tax bill on top of everything else.
How many times can the federal government screw over this young couple affected with a chronic illness?
Stay tuned...I'm sure that "the man" has some more tricks up his sleeve...
real cancer, real lives, lucky number 13 edition
H
ello and welcome to the thirteenth edition of Real Cancer, Real Lives! This blog carnival is a continuing effort of patients, caregivers, and medical bloggers to document what living with cancer is really like. The goal? To bust through the misconceptions about this disease that are perpetuated by the media and those who've been lucky enough to have never had to deal with it.
The submissions for this edition run the emotional gamut. There are joyous, frustrated, anxious, and mad-as-hell posts--but such is the nature of cancer. Please enjoy the following posts:
Patient BlogsCancer Portrait shares the
great news that
she is now in remission! Please stop by and share in the celebration!!
Minerva, author of
A Woman of Many Parts, submitted
"So Angry...," a post which provides a crystal-clear view into the myriad of ways that this disease affects the lives of so many.
Jenny of
Jenny's Belly celebrates the end of her chemotherapy with her post
"Last Day."Debutaunt, who is gearing up for her bone marrow transplant tomorrow (!), writes about
the hospital experience in Haiku. Head on over and wish her luck.
Caregiver BlogsDoug, the author of
Below the Beltway, takes note of the attention recently directed towards ovarian cancer due to Coretta Scott King's death. In
"It's About Time," he calls for more research and better diagnostics for this particular kind of cancer.
Cary of
Cancer News Watch sings the praises of pain meds in his submitted post,
"Thank God for Drugs, The Pain is Gone."Real Cancer, Real Lives needs you!If you’ve enjoyed reading this week’s carnival, please visit the
Real Cancer, Real Lives home page and read more about how you can host the carnival or submit your cancer-related writing. There has been a dearth of both hosting volunteers and post submissions lately—please get involved!! By starting this carnival,
Cary and
Lori have created an open, honest forum for anyone who is affected by cancer. Won’t you help out?
E-mail Cary to sign up for a date to host the carnival. Currently, 12 and 26 March are available, as are all dates in February.
Submit your posts at the
blog carnival submission form (please make sure that "Real Cancer, Real Lives" is highlighted in the "choose your carnival" box).
Real Cancer, Real Lives, Cancer
on the road again...
I
n running news, there is good and bad. Bad news first because I'm an "let's end on a high note" kind of gal.
The bad news? I'm still at about the same weight I was when I started. My shape is changing, and my clothes fit better, but that number on the scale is refusing to budge. Which gets discouraging after a while.
But the good news is that I'm now running a full two miles every day...without stopping to catch my breath or take a walk. I'm not breaking any speed records, but I am running the whole thing! I know that two miles isn't a lot, but it's more than I've ever been able to run all-at-once in my whole life. So I'm feeling pretty damn accomplished this week. I only have to add 24 more miles to that, and I'll be ready for December!! *grin*
Days Running: forty-two
Peak Weight: 222 lbs./100.7 kg
Current Weight: 221 lbs./100.24 kg
Miles This Week: 7.6
Total Miles: 30.4
adrift/astray
A
fter this long, strange trip, I have reached a crossroads that is completely foreign. In some strange, sick way, absence is making the heart grow fonder. Without our lives being dictated to us by doctors, we tentatively reach out into the fog and try to grab onto life. But instead we seem doomed to forever feel the mist slip through our fingers.
We try to envision what may lie down the road for us in 6 months, a year, five years...but it remains the same empty rhetoric that was to serve as inspiration during the treatment. Eric and I both knew that, while in the midst of his bone marrow transplant, that talk of houses and new jobs and adorable adopted children and pets was literally just talk. It was nice to think about, but there were far greater matters at hand. Focusing on survival and daily medical testing forced us to switch how we gage the passing of time. For now, every day without aches or nausea or skin rashes is a good one.
In theory, living for the moment is a great perspective to have--our experience has forced us to take stock of and appreciate the small things in life. But when finding joy in the short-term becomes apprehension of the long-term, this perspective is no longer welcome. We
want to need to find a new life--being part of a renting couple with one menial and one wholly soul-crushing job is not the Great American Dream. But each decision is fraught with risk--the availability of health insurance for a transplant patient weighs heavy on our minds, as does proximity to a proper hospital--what if Eric found that dream job, only to find out that the only large medical facility in the area was a podunk County Hospital? Should we bother to make long-term plans, when we are armed with the knowledge that our own mortality is so frail?
Part of me just says, "Fuck it"...and that voice is getting louder and louder. There is a self-destructive streak emerging that I never knew I had. That part of my brain would be perfectly happy to take the easy way out; to move to a cheap house in a backwater town and get a dead-end job where it might be OK if I showed up hungover once in a while.
I am having trouble finding the right words to describe this mental fog...it is not depression, but rather a cavalier dismissal of any new challenges...I am insulating the two of us in mediocrity...
finding god, or a reasonable facsimile thereof...
A
s I've
stated earlier, organized religion and I aren't a very good mix. I have too many questions about the rules of individual denominations to be considered a follower by those who are truly faithful. I've been lucky enough to be exposed to many different religions and denominations in my lifetime; I just haven't found anything yet that truly speaks to me.
Imagine my delight then when I found
this. The Church of the Flying Spaghetti Monster might be old news on the internet, but it's hilarious, so I'll share it anyway. The site pokes fun at the recent Intelligent Design phenomenon, succinctly spearing those who take their beliefs way too seriously (as in, those who say "I'm right about religion and if you don't agree with me, you're going to hell") at the same time.
Enjoy, and happy Friday...
running like hell, part two
F
ortunately, after "taking a break" from my training, I was able to get back up to speed with a shocking lack of difficulty. The weather's getting better and I've been able to run outside more. This is a lot more interesting than running on the treadmill, so I've been a lot better about getting myself going. There's a two-mile circle that I run, and I'm almost at the point where I can run the entire distance without stopping to walk. Progress has been made, but there's still a long way to go.
Because of starting late last week, I only got in five miles last week. I'll start posting full stats again this weekend. Thanks for the supporting remarks, everyone...they really help to motivate me.
an open letter to my husband
D
ear Eric:
Today is the one-year anniversary of the diagnosis of your relapse. I face this grim reminder with many conflicting emotions: the carefree beach-bumming of our first ten months of marriage lies in starkest contrast with everything that happened after that fateful day. Sometimes, it seems like a day spent without discussing doctors, prescriptions, or treatment is so far away that it must only exist in my distant memory. The rituals of maintaining the medicine cabinet and driving to various clinics have replaced the lazy mornings of pancakes and pajamas until noon. Although you have survived 80+ spinal taps, 10 months of different forms of chemo, and a bone marrow transplant methodology (non-matched donor) that has only been in use for four years, I know that your biggest concern is the effect that leukemia will have on your family's future. You worry about the financial impact of not being to work on top of the added expense of doctor's copays. The fact that we had to relocate for your treatment has weighed heavy on your mind. Even though you had hidden behind the "kids are annoying and expensive" guise, I know that you were heartbroken when we found out that we would not have the option of making a small, perfect human being together.
You once asked me if I would do it all again. In spite of everything, dear, the answer is yes; because all of it happened with YOU. You are greater than the sum of your parts. The love in your heart far outweighed the effects of your faulty bone marrow; the beauty of your soul shone through even when you were bald and bloated from the chemotherapy. I used to think that strength was being independent and influential to others; you have taught me that this quality instead is a result of the kindness that one shows to their fellow beings. You have shown me that bravery is being fearless in the face of the most unlikely of odds. Eric, you are greater than any disease that could be thrown our way. You WILL beat this.
I love you and can't wait to see what the next year brings in our life together.
Yours,
Amanda
flowers for debutaunt
T
he lovely
Debutaunt needs some support. She is a regular read of mine, funny, fabulous, and a mommy to one of the cutest little girls around. She also has leukemia, and is being admitted to the hospital tomorrow morning to start her bone marrow transplant at M.D. Anderson. Please head on over and leave some kind thoughts.
Deb frequently challenges her readers to complete assignments that encourage taking part in life's small joys. Recently, she received
two dozen roses and asked her readers to get flowers for themselves so they might share in the same joy that she experienced. She's just like that--generous, joyous, and REAL, even in the face of a long, complicated treatment.
These flowers are in honor of you, Deb. I know that you won't be able to have real flowers in the hospital. However, I hope that you know that you have so many people all over the internet and beyond thinking about you and hoping for the best. The transplant won't be easy, but I know that you'll do your best to kick those lovely stem cells into high gear. You CAN do this. And we'll be rooting for you with all we've got.
back on the wagon...
I
f you've poked around here a bit, you might know that I pledged to run a marathon back in December for the Leukemia/Lymphoma Society. And you also might have noticed that I said I'd post weekly updates on how the training was going. And maybe you noticed that I hadn't posted an update in a while.
I fell off of the wagon in a big way. Not just failing to exercise, but shoving my face full of any kind of junk food imaginable. My low point was asking the cook (with a manic gleam in my eye) at the Youth Center if she had any chicken fingers left--keep in mind that these are School-Lunch-Program, ultra-greasy, processed "chicken" shapes. With dressing. I wolfed those suckers down like an addict.
It all started innocently enough...two weeks ago, I had gotten the mother of all colds and quite literally couldn't breathe without the assistance of copious amounts of decongestant. For three days, I was shaky and wheezy and mucus-y, and I really don't think that trying to run at that time would have been the best idea. (I also managed to drop a large bowl of yellow mustard on my running shoes. The really smelly kind. Don't ask.) But then, I got better...and failed to start exercising again. By the end of the week, I had slid into all of my old (bad) habits. I was nabbing snacks with the kids (and eating the gross "meat" products instead of the fruit), eating seconds at dinner, having a chip or two or twenty while I watched the game...
Changing one's lifestyle is a road fraught with distractions--one wrong turn and suddenly you're back where you started. But I have a great cause to run for in both my husband and the Leukemia/Lymphoma Society.
So yesterday, I laced up my shiny new, mustard-free running shoes and got back on the wagon. And I'm running like hell to make up for the time I've lost.
decision
A
bout my left boob: I finally came to two decisions today. Number one, Eric and I get worked up about medical stuff way too easily. Waayyy too easily. Secondly, even though we both got really paranoid about all of this, I still deserve to meet with someone who will take the time to answer my questions about the sonogram.
Eric got a message on his phone today from my referring doc, telling me to call back and ask to speak to the charge nurse. We have a history of phone calls like this and the outcome has never been good--in our case, this message is usually code for, "We've got really bad news for you and we don't want to leave it in a voicemail." Eric relayed the message to me and promptly broke down. While on hold with my doctor's office (it took them a while to grab the nurse to take the call), I got no fewer than two phone calls asking if I had heard anything yet.
I finally got through and spoke with the nurse.
"Um...Ms. S-----? We have notes of a fibrocystic breast change in your record, and we'd like you to go ahead and schedule a surg consult..."
I asked the nurse my questions about the content of the mass and told her about my diet, but she didn't have the pics in front of her. She did tell me that if radiology had really thought that the mass was something to worry about, they would have sent me for a consult that day.
So...surg consult is next month. And I'll get my second opinion and have my questions answered.
But I'm not getting my panties in a bunch over this.
P.S. Yesterday was Eric's first day of work! Other than the scare with the phone message today, he has been in SUCH a good mood...it's awesome that he has somewhere to be now that's not home or a doctor's office.
real cancer, real lives
T
rish, the author of
Blogging for a Cause, has posted the eleventh edition of Real Cancer, Real Lives. Many outstanding bloggers have supported this effort with poignant, outraged, and touching submissions. Head on over, read, and enjoy, and
sign up to host or submit a post if you are inspired to do so!
meme is the new black
Y
es, I know, memes are the bane of the blogosphere. But this one (stolen from
mipmup) struck me as particularly interesting. And
Lucinda,
Miss Ann Thrope, and
Dooce have all done them lately, which leads me to believe that meme-stigma might be fading. So here goes:
10 Years Ago...I was fifteen and a sophomore in high school. I had just met Eric and we were becoming good friends. Still in the awkward phase though (although who isn't when they're fifteen?)
Five Years Ago...Junior year of college. Living in a basement apartment in Pittsburgh with three roommates and one of their boyfriends, who was there all the freakin' time, so he sort of counted as a fourth roommate.
One Year Ago...Working as a govt. peon intern (of the non-Monica Lewinsky variety) in fabulous Hawaii. Eric and I were still in the newlywed phase. It was awesome.
Yesterday...I was at work. It was crazy. One of the little girls calls me "Pickle-head" for no apparent reason (but she is so damn cute that I really don't mind).
Today...According to the newscasters, the DC area is getting "The Snowstorm of the Century!!!" I went to the mall this morning for a haircut and got a new book off the bargain rack (I am a total book-store geek). Stayed in, watched the snow, read my new book ("Dress Your Family in Corduroy and Denim," by David Sedaris), called family, and cooked broccoli soup-from-scratch for dinner. Yes, I'm boring.
Tomorrow...Digging out, and going for breakfast with Eric. Also, we're going to the craft/hobby store. I'm looking for another endeavor to take up.
Karen has me inspired with her recent posts on knitting and crocheting.
Five Snacks I Enjoy...Anything salty...nuts, corn chips and salsa, veggies and dip, stovetop popcorn, and salt and vinegar chips.
Five Bands Whose Songs I Know Most of the Lyrics To...Green Day, The Beatles, and non-band musicians, Madonna, Fiona Apple, and Neil Young (although some of my favorites are from when he was with Crazy Horse).
Five Things I Would Do With $100m...Anonymously donate to a whole slew of charities. Help my family. Buy back our family farm, and turn it into a family summer home/"gentleman's farm" with a few animals for fun. Buy a small farm and a home on the Big Island, and a condo on Oahu.
Travel.
Five Locations I'd Like to Run Away To...Hawai'i. Alaska. Australia. the Galapagos. Samoa.
Five Bad Habits I Have...Procrastination, being late, being irreverent, eating when I'm stressed, and not being the best at choosing my battles sometime.
Five Things I Like Doing...Blogging, writing, reading, cooking, and running.
Five Things I Would Never Wear...Fur, shoulder pads, tapered-leg jeans, anything pink, and high heels.
Five TV Shows I Like...The Daily Show, Miami Ink, Aqua Teen Hunger Force, Spongebob Squarepants, and Paula Deen's Home Cookin'.
Five Movies I Like...Kill Bill 1. Kill Bill 2. Eternal Sunshine of the Spotless Mind. Dogma. Monty Python and the Holy Grail. and (bonus) Silence of the Lambs.
Five Famous People I'd Like to Meet...I met some once and wasn't impressed. Henceforth, I am satisfied with how I imagine they would be if I met them, instead of actually meeting them.
Five Biggest Joys at the Moment...Eric, Makoa, Ku'uipo, my brother Andy's sense of humor, and the fact that everything is OK.
Five Favorite Toys...My old, plugging-away computer, the CD player in my car, and my phone. We splurged and got each other RAZRs for Xmas. They were totally worth the price.
Consider Yourself Tagged...
community
B
logging about cancer has played an important role in helping Eric and I deal with his relapse of leukemia. Writing here has allowed me to vent frustrations, share our bone marrow transplant experience, and receive support when we were feeling low. This blog has also introduced me to a wonderful community of people who have also been touched by cancer in one way or another. The writers of cancer blogs are incredibly giving souls who are sharing their stories in the hopes that it may provide some comfort (and a realistic point of view) to the newly-diagnosed and their loved ones. This online community is comprised of amazing and inspiring individuals.
The cancer-blogging phenomenon is a fairly new one, with many of the most popular blogs emerging within the past eighteen months. While there are more patients, caregivers, and loved ones choosing to share their experiences in this format every day, there is no definitive guide to cancer bloggers. With this in mind, I have created a webring for cancer bloggers. "The cancer ring" is an open community for anyone who has been affected by this disease.
To submit your site to the ring, please check out the "rings" category in the sidebar. All submissions will be approved by me before addition to the ring. Spam blogger, ad blogger, or blogger about astrology? Don't bother.
I welcome all of my fellow cancer bloggers to be part of this community.
lovely lady lumps
N
ow that the transplant is over and Eric's condition is stable/in remission, I've been trying to take better care of myself. Exercising, eating right, and getting to know my new doctors here in Maryland have been pretty high on the priority list--but recently, during this process, I had a brief encounter with the old fear and dread that marked the early days of Eric's relapse.
I have had localized non-cyclical breast pain for well over a year now. The pain is not intense, and sort of comes and goes as it pleases without following any sort of pattern--and it always occurs on the far left side of my left breast and up into my underarm. But, oh, the tenderness that comes with it. Sometimes it is so bad that I can't do so much as hold a book to my chest on that side.
I first told a doctor about the problem over a year ago during my annual exam. She switched me to a low-dose version of the pill and told me to come back in three months if there was no change. A month passed, and then Eric relapsed. I wish I could say that I had a better excuse for not following up with my own health concerns, but the honest truth is that I forgot about taking care of it--I was spending hours at the hospital with Eric's doctors, how was I going to find the time to go to a different doc for myself?
Despite weight fluctuation, diet changes, different types of the pill (and then none at all after we found out that Eric would probably be sterile from the transplant), the pain persisted. So, I finally told my new doctor about it during an appointment last month. She dutifully trotted out the same old advice ("Don't eat chocolate or drink caffeine," and "Wear a really good bra"), but gave me a clinical exam nonetheless. She paused when she reached the area in question and said, "Hm. That feels funny. I'll order a sonogram..."
Meanwhile, I'm laying on the table in the most indelicate of positions, thinking, "WHAT!?! What do you mean, 'That feels funny?!?' WTF, woman!!"
Fast-forward to Tuesday morning. I left for the sonogram appt, running late as usual. I was really nervous. I hadn't told Eric anything about what was going on (he thought that I had an early meeting at work)--I didn't want to make him upset if it turned out to be nothing. And I soon found out that sitting through multiple tests and screenings with a loved one does nothing to prepare you for actually going through one yourself.
Once back in the dimly lit radiology room, I laid on the table, feeling like the science-project-of-the-week about to be dissected. The first tech came in, a woman about my age. She smeared the warm goop over my chest (it occurred to me that the scenario could possibly be a starting scene for a lesbian porno) and screened me with the wand. She found nothing. I was beginning to relax.
Then, the senior tech came in "just to take a peek." She began screening the offending area, when IT showed up on the screen. A large mass, large enough that she had to take 2 still-shots of it to capture the entire thing. She took at least 20 pictures of it, large and starkly white compared the grey image of the rest of my tissue, and shaped like a cocoon. The fear came back instantly--the look on the tech's face told me that this was NOT a normal thing to find. I managed to ask her if the thing on the screen was a cyst, and she responded, "No, definitely not...I have to get the doctor."
It took about 20 minutes to get a consult from the doctor. I was laying on the table, lights turned low, alone in the room with the stills of the mass staring at me on the screen. Trying to be brave, I tore off a part of my paper "modesty gown" and used it to wipe my eyes. I really didn't want the tech, or anyone else, to know just how freaked out I was.
All at once, the second tech and the doctor rushed in. "Nothing to worry about," said Doc, "I just see a mass of fatty tissue. Be more careful of how much chocolate and caffeine you intake, and take tylenol for the pain. Any questions?" At this point, my emotions were so high that I could barely squeak out "Yes" or "No" in response to his questions.
I left the clinic feeling reassured and somewhat triumphant, but now that I have had a few days to think about what happened, I wish that I would have asked some questions. Eric and I try to eat organics whenever we can, as well as cook most of our own food--including dressings, soups, etc. We don't eat a lot of mass-produced, preserved foods, and almost never have candy or soda in the house. I do enjoy coffee, but only drink 4-5 cups a week--and even that is a fairly recent development, as I drink it mainly to have something warm in my hands on a cold winter morning. For all of these reasons, I really don't think that the pain is diet-related. And finally, why, dear doctor, does that thing in the pictures look so different from all of the other fatty tissue in my breast?
I don't want to come across as a bitchy hypochondriac. Ever since Eric's relapse, I find myself swinging more and more towards that extreme: suddenly, every cough of his is a potential lung metastasis, every dry patch on his skin potential Graft-Versus-Host-Disease. But I'm sort of concerned that the doctor in radiology really didn't take that close of a look at my sonogram.
When does being an advocate for one's health cross the line into being a hypochondriac?
achievement
A
fter much anticipation (and a bad case of nerves), Hubby has a new job! He will be working afternoons at our local Target, until we figure out whether we're staying in this area or moving later on this year. (He is still wistfully checking for National Park Service jobs in Colorado on a weekly basis.)
This is a small step for others, but is HUGE to us in so many ways. The new job will get Hubby out of the house and socializing with people who aren't doctors. Additionally, not having to be the sole provider for the family will make me rest a little easier. This job is one more notch towards the life we had before the relapse.
Inch by inch, we're moving back towards the realm of "regular couple"...and it feels GREAT.
thwarted and bushwhacked
I
didn't cover that much mileage this week, due to the workday from hell on Thursday and subsequently coming down with a nasty bug. On Thursday, I hosted the first annual Job Shadow Day for our youth and teens, and the respose was incredible! Seventeen kids got the opportunity to shadow the job of their choice, and the selection was awesome. One of the teens got to sit in on a video teleconference with Donald Rumsfeld, and three of the preteens got a tour of Air Force Two, as well as getting to meet President and Mrs. Bush (this wasn't planned, but was a lucky coincidence--the helicopter landed right as the youth were finishing their tour).
Regardless of whether you support the administration's policies or not, it was unequivocally an awesome and exciting experience for the kids. I know that I've complained in the past about the DC area, but living here definitely has its perks. The event made for a long day for me, and I unfortunately woke up Friday with a startling inability to breathe without blowing my nose every two seconds. The evidence about exercising while sick is conflicted--but I didn't want to take a chance, so I took it easy. Here's the stats:
Days Running: twenty-two
Peak Weight: 222 lbs./100.7 kg
Current Weight: 220.5 lbs./100.02 kg
Miles This Week: four and 7/10
Total Miles: seventeen and 8/10
hundreds and hundreds
J
ust a quickie post to let you know that I finally got around to finishing a "100 Things" list. It's very appropriate that the list is finished now because this is my 100th post!
Check my profile section in the sidebar for more details.
