September 25, 2008

People You Never Knew Were Helping You

Shocking. While writing my book, I encountered many professionals who deal with pain, healing, and cancer and were often stunned and stumped by my questions about 20 and 30-something patients. There was a total disconnect that our bodies could be so fallible. That yes, we can and do end up as their patients too.

Not so with Dr. Diane Meier. She is a palliative care physician who I connected with and interviewed for my book Everything Changes: The Insider’s Guide To Cancer in Your 20’s and 30’s. I’m excited to share on the page with readers her practical knowledge that debunks the myths of pain relief methods and medications.

I was thrilled to learn this week that Dr. Meier became a recipient of a MacArthur Fellow award. Congrats! Check out this clip of video to learn more about her work.

Visit the MacArthur Foundation to see videos about other inspirational scientists, artists, anthropologists, musicians, and more who are changing the world.

I’m curious, if you could nominate someone as a MacArthur Fellow, who would it be?

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September 22, 2008

Cabin Fever Reliever #1: Coolest Cancer Apartment

Are the walls closing in on you like Luke, Hans, Princess Leia, and Chewie in the garbage compactor? Does chemo fatigue have you chained to the couch or locked in your house for days on end? I know first hand what it is like to spend weeks and months living like the boy in the bubble. My remedy: rearranging the furniture (come on guys – not like that!)

My budget was non-existent, my energy for large projects nil, but I became so pleasantly distracted (okay obsessed) with rearranging my apartment that I succeeded in getting my dresser and the arrangement of tshatshkes on top into a juried art exhibition. Never before had I cared so much about brightening up my surroundings and whipping into shape the décor of my apartment. Could I find nobler ways to help humanity than switching the location of my desk three times? Of course, but screw it, this is cancer and I needed some good distraction.

If you are looking for cheap solutions for harmonizing your space and whiling away the twenty and thirty-something cancer hours, check out these resources. Watch out, they are addictive.

Apartment Therapy is the converse of the pre-fabbed, overly produced DIY projects you see on HGTV. This website features guerilla DIY home solutions with pics from the insides of real apartments. Most of the posts seem to be from 20 and 30-somethings. Maybe they should start a coolest cancer apartments project just for us?

Better Homes and Gardens Arrange-a-Room is an online design tool that allows you to create a scaled drawing of your room and drag and drop furniture to see what will fit where best. Warning, this site is booby trapped with magazine subscription pop-ups, but the tool is so easy and fun to use it is worth it.

Has anyone else become obsessed with life within the four walls?
What are some of your best/worst cancer home project tales?

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September 20, 2008

Subprime Cancer

Thanks Paul Krugman for pointing out to me reason 152 why if I care about cancer I cannot vote for John McCain. But before I launch into Johnny, first a little lesson.

Do you know what “market-based health reform” is? Here it is in a nutshell:

1. Ditching insurance company regulations so they can vie for, or exclude us from, their business with little to no government oversight. For example, they could continue to exclude for pre-existing conditions, or for any other reason they wish.

2. Transferring health insurance from employer based insurance to individuals purchasing health insurance on their own. Mind you, without regulations, companies could charge whatever they damn well please for this insurance and exclude you for any reason. Under this system a part-time job at Starbucks would likely no longer provide you with an insurance back up anymore.

Paul Krugman brought to my attention an article by John McCain in the September/October issues of Contingencies, (the magazine of the American Academy of Actuaries). It is called Better Health Care at Lower Cost for Every American. In this article McCain expounded upon what he believes to be the brilliance of market-based health reform. Here is what he had to say:

“Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade in banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation.”

Wow dude, what a stellar idea. Yes, we have deregulated banking over the last decade and what a sweet spot it has landed us in. Maybe if we follow suit with healthcare, my cancer could go subprime. Maybe I could foreclose on my tumors too. But if we are going to follow in the footsteps of what lead us up to the Fannie Mae and Freddie Mac government bail outs, are we just waiting for Blue Cross and Aetna government bail outs too?

In a system of deregulation where the government simply steps in when big companies fail, why not step in with the government from the get go? Why not have regulations to avoid these kinds of belly up debacles. Oh, right that would limit the guys who run these companies to only being able to afford three or four houses instead of however many houses they currently own. How many houses do they own? Oh, I forgot, they’ll have to check with their staff to figure that out.

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September 19, 2008

Down with OCD? Tip #1: Trigger Happiness

I’m not trying to incite obsessive compulsive disorder. Really, I’m not. I just know that many of us young adult cancer patients have immune systems that are as weak as twigs in a hurricane, and we are looking for new ways to avoid the latest plague. I’d like to share with you my most recent discovery in germ elimination.

After nursing my husband through a rather horrific bout of the stomach flu, I got crafty with a new technique for hosing down the germs in our apartment.

1. Get a bottle of spray cleanser
2. Remove the spray trigger and attached tube
3. Run and squirt water through it to flush out cleanser
4. Screw it into a bottle of rubbing alcohol
5. Open windows
6. Go crazy spraying down door knobs, faucet handles, toilet handles, cell phones, keyboards, and any other surface that can stand up to the task.

For some cancer survivors, the down side of alcohol fumigation may be the smell, which for many can trigger a PTSD response flooding the mind with images of blood draws and sending your gag reflex into a tizzy. On the other hand, perhaps you can look at this as not just an approach to cleaning, but also a method of systematic desensitization. For me, the smell of alcohol wins over the fear of catching the flu. This winter when sneezing, coughing friends leave my house after a dinner party, dishes are not the first thing I will be doing.

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September 17, 2008

First In Line

Whether you were diagnosed with cancer as a kid, teen, or during college, cancer can leave your cash flow high and dry, your credit cards maxed, and your college career at a standstill. Thankfully, loads of foundations and organizations are beginning to recognize this situation. Grants and college scholarship for us young ones with cancer are sprouting up everywhere. Hunting them down, however, can be a long and winding google hunt. Until now. Enter on the scene: CCCpedia.

Be one of the first to take a crack at the beta release of CCCpedia, which contains comprehensive and accurate information on over 100 organizations, totaling more than 3,000 scholarships and $5.8 million for young adult cancer survivors.

The CCCpedia scholarship database is a new project of Carolyn’s Compassionate Children – and no, that’s not the name of a soap opera or a Danielle Steel novel; Carolyn’s Compassionate Children is a non-profit organization started by Carolyn Rubenstein, who may well win both the queen of overachievers award and the Parker Posey lookalike contest. Carolyn started the organization in eight grade. She is now 23-years-old and the organization has a staff of three people working for her. Let them work for you too!

Have any of you ever applied for or received a college scholarship for cancer survivors? What was the experience like?

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September 15, 2008

Beating Gustav Klimt’s Kiss

Gushing or weeping. I know tons of people who get pretty sentimental about cancer, spilling their tears over telethon speeches or Lance.  Me?  Give me a cheesy rock ballad sung by guys with wretched voices, set it to the choreography of slow movement animation, and my tears start to well.

I’m so terribly uncool that I have never heard of My Chemical Romance or their song Cancer. And the kick ass video that Danielle Baxter made has already been up on You Tube for over a year. But I just discovered it and am a bit speechless.   Danielle, despite your whole disclaimer that “if we think you made this video to be a ‘real’ portrayal of cancer, then we are sadly mistaken’, I say you nailed it.  Thanks to you and MCR for getting that cancer isn’t just for seniors and that even us young and pretty-darling young adult cancer patients can die from it too.   And lastly Danielle, I think you’ve got Gustav Klimt beat with that kiss.

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September 15, 2008

Krasney’s Five

A girlfriend. A boyfriend. A best friend. A sib. I write a lot about stumbling around the healthcare world as a young adult cancer patient. But what if you are not the patient? How do those who support us from the sidelines dive into this experience and what is most useful for them to know? I came across some of the best advice ever from a blogger who goes by Krasney.

About Krasney: Native Texan turned Southern Californian turned Who-Knows-Where-She’ll-End-Up-Next resident of Life. Madly in love with a man who has cancer (Hodgkin’s Lymphoma). Tries her hardest to keep him smiling or at least comfortable and feeling loved. Former horse trainer, currently works in the psychotic world of the entertainment industry. When Hollywood isn’t making her crazy she’s gardening, traveling, laughing, getting another tattoo, writing or loving on her giant English Mastiff dog named Angus.

Krasney’s Five Pointers for Supporting Someone With Cancer

1. Keep a good attitude. I don’t mean be so positive they want to kill you, I mean be your normal, warm, loving, funny, fun self. They love you for a reason. Be that person.

2. Listen. A lot. To everything no matter how scary it is. And it will be. It will be terrifying, but the fear you feel won’t be half as terrifying as the fear that exists inside of them. So listen to all of it and respond when you can IF you can. And if you can’t respond tell them you don’t know how to respond. Then tell them that you love them.

3. Befriend the staff. At the hospital it is IMPERATIVE that you befriend the nurses, doctors, staff, EVERYONE. Even if you are only there for a day, it is so important that you make that staff want to help your friend/lover/sibling. Just by showing up with a smile, saying thank you, using their names and being courteous this is a huge way to get them on your side/your friends side. They will be more willing to listen to you and your friend, more willing to go out of their way to make him/her comfortable and more willing to go the extra mile when you aren’t there.

4. Be prepared. At the hospital I always have these things on me to make my life easier so I can help make his life easier: Unscented hand sanitizer, a book, a shawl (hospitals can get cold!), an inflatable travel pillow, something to write on and with (to take notes when talking with doctors), water and a camera.

5. Never wear perfume or scented stuff and watch being around cigarette smoke. Chemo/drugs etc makes patients highly sensitive to smells.

Krasney and I hope this short list helps.
What other tips or pointers do you have to add to it?

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September 14, 2008

Survey Says #2: The Internets

Never. Almost never. Sometimes. Often. Always. I confess: I love taking surveys. If you do too, have at The Healthy Communication Survey, created by Dr. Jeong-Nam Kim at Purdue University. Even if you don’t share my strong admiration for surveys, you should take this one anyway. Here’s why:

Many reports show the Internet is a good way to obtain information and interact with others who experience similar health issues. Take for example a great study from the Pew Internet and American Life Project. It shows that yes, we young ones take the prize: Out of every age group, health seekers age 18-29 cite the most benefits from online health information.

Although such reports show the habits of online health seekers, few reveal the down and dirty theoretical workings behind the hours we spend staring at the screen and clicking away. (For any of you on Planet Cancer’s myplanet, you know the addiction about which I speak.)

Enter the Healthy Communication Survey, whose goal is to uncloak the theoretical explanation behind the Internet and health communities. Theory shmeory, what’s the point? When cancer and other health organizations seek funding for online learning and support projects, they’ve gotta pony up the proof that this is a real service to us. They’ve gotta justify the need by showing the nitty gritty behinds the scenes benefits that online resources play in our lives and our health. Why do we use them? What role are they filling? How does the Internet change the way we manage our health?

As a constituent of the young adult cancer experience, take seven minutes to chime in with your opinions. And stay tuned here for the final results of the survey.

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September 12, 2008

Chemo 101 for the Newbies

After some disappointing years spent as a starving actor, Chris Blumer turned to a career in drinking. She is the founder of her own wine consulting company called Winediva Enterprises, which provides wine classes, private tastings, restaurant training, and wine writing. Chris was diagnosed with cancer in May of 2008 during surgery for an ovarian cyst. Her surgeon removed all of the tumors and some optional body parts while he was in the neighborhood. Chris, who is 38 years old, currently gets chemo every two weeks to make sure the cancer cells don’t get ideas about sprouting anywhere else.

Chris wrote the following essay for newbies on the chemo-scene. She receives chemo at the swank Lurie Cancer Center at Northwestern Memorial Hospital in Chicago. (I’ve never had treatment at the Lurie, but I have had a major meltdown on one of their waiting room couches; plush yet firm.) In upcoming weeks I’ll also post chemo 101 essays by young adult cancer patients receiving treatment in a public and rural cancer center.

Yesterday, I sat next to a very nervous young woman in the grand waiting room at the hospital. She had just got a port put in and had no idea what to expect or even where to wait in the giant room. I’m so glad she had the courage to ask me for the 411. I thought I’d share my experience with any newbies who may be starting treatment soon.

First off, a chemo port is a glorious thing and saves all your veins in your arms and the rest of your body for other wacky stuff they may need to inject you with. But, heads up, getting one put in is a bit freaky. Here’s the thing: they keep you AWAKE while they do it. You get some sedative type drugs, but essentially a nurse just tells you to look the other way while the surgeon gets down to business. I felt no pain and my awesome nurse kept me occupied with hilarious chat about 80′s music and gay fashion. Essentially you leave with this quarter sized titanium thing just under the skin with a little scar.

When I report for appointments, I check in at a big reception desk where very nice ladies ask my name and birthdate several times and then hand me a pager thing like you get at Chili’s or Cheesecake Factory. It lights up and buzzes when the next doc or nurse is ready for you. I have to admit, the first time I got one of those damn things I felt like the whole process was pretty dehumanizing. Are you freakin kidding me?! A restaurant pager?! But I got over my indignation pretty quickly as I realized its probably related to HIPAA and privacy policies, which frown upon shouting patients’ names in a crowded waiting room.

If you have a port, at my hospital, you are generally buzzed right away to go the blood draw area. Those “in the know” figure out that you can pretty much migrate back to the smaller blood draw waiting area with out the nurse escort coming to get you. The magazine selection is generally better in this spot for some reason, so I recommend doing your reading/pilfering mags here. There’s also a big bag of knitted hats that some kind soul leaves in this area free for the taking. They’re a bit dowdy for my taste, but still super thoughtful.

The folks in blood draw flush your port with an injection and then insert a kind of plug like thing into your port that has a small needle. They have a cold spray to numb the area if you like, but I prefer to just take a deep breath and suck it up. It only stings for a short second. At that time, they take a couple of blood samples to make sure your counts and such are high enough to get treatment. Then they connect a small IV tube section to your port and secure it with some tape or special protection if you have the fanny pack/chemo to go thingy like I do. Then I get dispatched back to the big waiting area again. If you feel like you need to pee or might soon, you can request a pee cup in blood draw. They will hold your pee sample for your nurses who will be looking to get one from you a bit later. So, no need to hold it if you’ve got some morning coffee waiting to escape now.

It takes about 15-30 minutes for the lab to check your blood and OK you to move on to chemo treatment. Once again, I am paged – this time to a treatment “pod” of rooms. A nurse from my team (I get the same gals everytime, so that’s nice.) takes my vitals and gets me comfy while inquiring about my side effects and how life and such is going. They hook your meds on to a big IV type stand and connect the tubes to the tube in your port. A few buttons are pushed and you are in business. All of my treatment rooms are private with a bed, TV, DVD player and a nice side table for your stuff. There’s also a recliner for friends to kick back in. On my longer drip days, I watched a movie, read a magazine, and suddenly I was done. But you’re free to sleep, read, play on your laptop or whatever you like.

Since there are lots of fluids dripping into your system, you will probably have to pee a few times during treatment. (I also bring a bottle of water and a snack for longer days. ) At first, this may seem impossible as you are tethered to a machine and an IV pole which is plugged into the wall. Never fear! You can unplug the machine and drag the pole with you to the bathroom and just plug it back in when you return. It runs on battery while you do your business.

I highly recommend staying as hydrated as you can and eating a healthy breakfast on the day of treatment. It definitely seems to help flush the poison stuff out of my system and gets me feeling “normal” quicker. I prefer to go by myself, but at least the first time around, you may want to bring a pal to keep you company. Some people are truly wiped out after treatment and definitely need a friend to drive them home.
I’m generally OK to just hop on the train, but best figure out how you react to your drugs first.

So – that’s my report. Hopefully this takes a bit of the “fear of the unknown” away and helps some folks know what to expect. I’m sure every hospital is different, but I think the procedure is similar at most big research and teaching hospitals. Don’t be intimidated by the environment. Everyone there is working to help you get better. They’re on your team.

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September 11, 2008

Best Medicine #1

If laughter were the best medicine pharma would go broke and we could pack in the pink ribbon, racing for a cure, and cancer research in general. So perhaps laughter isn’t the best medicine for cancer, but it sure as hell can be a great distraction from it.

Next time you can’t get your mind off of treatment, waiting for test results, or your mounting pile of healthcare bills, feast your eyes on this: Cake Wrecks. Last night Shannon and I stumbled on this blog about when professional cakes go horribly, hilariously wrong. We laughed till tears were streaming down our cheeks and we were gasping for air.

My favorite is “It’s only a cold sore.” What’s your favorite?

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