Everything Changes - The Guide to Young Adult Cancer

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?

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.

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.

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?

SU2Q. Part of Standing Up to Cancer is Standing Up To Quacks too. You know the kind. Carrots cured my cancer, you should try it too. These types of stories are harmless when kept to themselves, but when shared with the general cancer community, I consider them a public health hazard.

On September 5, ABC.com began an on-going blog series by a woman who called herself Joyce, who was sharing the blow-by-blow of how she denounced chemotherapy and headed to a quack in Scottsdale, AZ for treatment instead. I’d give you a link to her laughable blog, in all its vagueness and holy-rollering, but I cannot. I, along with a slew of other readers, posted a thoughtful response and ABC has eliminated any trace of its existence from the Internet.

Next time you run across some cancer quackery that makes your blood boil, feel free to copy and send my letter below, switching out the particulars ala Mad Lib style to make it your own.

Dear Joyce,

I am thrilled for you that your treatments are progressing so well. I am, however, startled that a national, authoritative news source such as ABC would venture into alternative cancer treatment with an anecdotal story series that provides no research, no mention of evidence based alternative therapies, and a poor, oversimplified understanding of the relationship between traditional and alternative medicine.

I am a proponent of first person storytelling (and in fact have written a book based on first person narratives of young adult cancer patients), but your story is a Pandora’s box. The goal of first person storytelling should be to educate the reader. Instead, this tissue paper thin journal entry only serves to confuse patients who may be searching for vetted, substantial alternative medicine information.

I shudder to think that this series may convince patients to follow in the footsteps of your writing by making quick, uninformed, gut level decisions about their cancer care, urging patients to forgo treatments that have greatly contributed to boosting cancer survival rates over the past 30 years. When you have cancer, education is not just power; it is what keeps you alive. I know, I have been living with cancer for 8 years and receive outstanding care from both traditional and complimentary care doctors.

Sincerely,

Kairol Rosenthal

On the back cover of yesterday’s New York Times Magazine was an add that read in 26 point font: PROSTATE CANCER SURGERY SO EFFECTIVE, EVEN WOMEN CAN FEEL THE DIFFERENCE. In smaller print it spoke of a new surgical procedure performed at Mount Sinai that results in fewer cases of prostatectomies leading to impotence.

From surgical procedures, to attitudes that empower women to pull ourselves up by our high-heeled bootstraps, I’m not sure how I feel about using sex to sell cancer recovery. On one hand, cancer and sex is a rather hush-hush subject, so perhaps it is good that we are even talking about it. But in what ways are we cracking out, dusting off, and dressing up our attitudes and images about cancer and sex?

It’s great to boost cancer empowerment through a sassy, act hot feel better attitude. Believe me, I’ve have days wherein slapping on a coat of lipstick and CFM heels, cranking up Erasure, and dancing around my apartment has given me a much needed jolt. But beyond private (or public) lipstick n’ high heeled carnival moments with our inner cancer divas, and beneath Vogue stories featuring models and actresses with cancer (who had the running start advantage of being drop-dead gorgeous before diagnosis), cancer and sex is not always so sexy – for women or men.

Tell me why I never see the glossy, sexy photos of a 24 year-old-woman, standing at 5’2 and weighing in at 198 from steroid treatment weight gain. Tell me why I never see the flick about the 35 year-old-woman post bone marrow transplant whose vaginal canal shrunk because of graft versus host disease. Tell me why I never read books about the twenty-two year old guy who cannot get an erection after his gazillion rounds of radiation treatment for brain cancer.

I’ll tell you why: because like it or not, the real deal cancer ain’t so sexy.

So all you bloggers, writers, authors, journalists, designers, satirists, filmmakers, ad moguls, and cause-related marketing gurus, if you are going to bring sex out into the cancer arena, do us a favor and drag out the REAL TABOO: start talking about the crazy complicated sex lives of young adult cancer patients. Talk about what it means when you finally land a guy in your bed but realize you cannot even stand to have your body touched because your skin is crawling with the post-traumatic stress of being poked and prodded by strangers.

Now hear this, memoirists, major network media, the cancer powers that be: the next time you haul sex and cancer out into the day light, try including the truth of when we feel like shit because our breasts are missing, our penises aren’t hard, we feel fat and ugly, or work-camp thin and gaunt, we don’t want to go shopping because we don’t have the money and cannot stand to look in the dressing room mirror, and the quick-fix prescriptive of self-empowered girl language or kick-ass guy attitude just doesn’t work. I’m excited to share with you some of this read deal conversation in my book, which will be out in the new year. But until then…

What are some of your stories of relating to cancer and sex?
Also, have you ever felt a disconnect between the way sexual empowerment is presented in books or media and how you actually feel about your body or your sex life?

‘Obama vs. McCain: Where Do They Stand On Cancer?’ was posted by the Lance Armstrong Foundation on livestrongblog.org. The posting included links to position papers on cancer from both the Obama and McCain campaigns. Both candidates tug on the heart-strings of what cancer has meant in their lives, outline bills they have voted for, and dress up their healthcare intentions in broad, pleasing language.

Personally I don’t care who showed up at what cancer rally, or even what their cancer policy intentions are. No candidate is ever going to say they won’t fund an increase in the National Cancer Institute. But, just because a candidate says they are going to fund cancer research does not mean they will lead our country towards the fiscal position to do so.

Additionally, according to the American Cancer Society, just as many cancer deaths in the U.S. are due to lack of access to health care as are due to lack of scientific breakthroughs. I believe fixing the insurance crisis is the number one way to increase cancer survival rates. It is impossible to detach the insurance crisis from economics, so we must look beyond cancer rhetoric to see how the candidates’ larger platforms do or do not support their healthcare claims: basically, show us the money.

McCain’s Health Savings Accounts and Healthcare Tax Credits will not benefit working families who do not earn enough to save or to get a tax credit: these programs will only benefit wealthier families. McCain’s plan to provide insurance to those who cannot afford it is to work with Governors on the state level using high-risk pools. This is not realistic: states are broke (because they have been picking up the tab of the federal government who is cutting social programs; this problem will only worsen under McCain as he stated he wants to eliminate more federal programs), and there is no way that 50 individual states can effectively solve the insurance crisis. State risk-pools are not affordable for the average consumer - I had state risk pool insurance, for which my state paid Blue Cross to offer me health insurance, which Blue Cross got to charged me $450/per month for. McCain is in favor of deregulating health insurance companies; this is at direct odds with his claim to limit pre-existing condition exclusions, which will never be passed under a Republican administration.

Fundamentally, McCain and his party have always supported tax credits that benefit those with the largest incomes, spending more on defense than the budget can often sustain, and spending less on social programs. These kinds of politics create an economy that cannot fund the doubling of the National Cancer Institute budget, or many of the other nice healthcare sound bytes that McCain proposes.

What is your take on the two position papers from the Livestrong blog post linked above?

Hours upon hours in a chemo chair. Months of car trips to radiation treatment. 100 forevers racked up in waiting rooms. Too tired, too car sick, too anxious to read but deeply in need of a supreme cancer distraction?

Make your time fly with This American Life, a weekly radio broadcast/podcast hosted by Ira Glass that explores bizarre stories about everyday life. It is the kind of radio storytelling that has kept me sitting on the street in my car for 45 minutes glued to every word, and has also sent me running to the bathroom with laughter, almost peeing in my pants. Episode themes vary from “Fear of Sleep” to “Breakups” to “Giant Pool of Money”. Each radio episode is offered as a free mp3 for exactly one week, beginning the Monday after broadcast, and old episodes can be purchased at iTunes. Best of all, for those who become addicted, their archives stretch back to 1995. If you have never heard the show before and are looking for a good place to start, check out their list of favorites. Just remember, you may need a nurse nearby to help you to the bathroom!

For those of you who have heard This American Life, which is your favorite episode? I think mine is the one where Starlee Kine calls Phil Collins for advice after a breakup.

Ten years ago at an outdoor shopping mall in Scottsdale, AZ, amid pseudo-grass and plasticized trees, my boyfriend (at the time)’s father nudged him in the arm and asked snidely, “Gawd, she’s a carey-ah-grapha?” I wanted to pull him up by his shirt collar and say, “Yes, asshole, I’m a choreographer because I’m good at it and I like it. Don’t make assumptions about my intelligence. If I wanted to be a molecular biologist, I’d be freaking doing THAT instead.” My self-esteem was ignited like never before. Since that day there are few things I have told myself I cannot accomplish.

As young adult cancer patients, we are forced to believe our cancer is the property of uber-scientists or the domain of self-helpers gurus. If you want to join the self-help gurus, no problem; meditate, pray, blow a wad on their workshops. But what if you want to reclaim a slice of your cancer from the uber-scientists? No problem; it’s free, and requires only a bit of time and the desire to learn.

The leading cancer discoveries are now being made in targeted molecular therapies. For example, an article in the August 31 online issue of Nature revealed advances in the understanding of telomerase. Telomerase is a protein complex whose duty it is to maintain the size and integrity of chromosome ends. Telomerase are active in all human cancer cells, but inactive in most cells that are not cancerous. Emmanuel Skordalakes, PhD, of the Wistar Institute, in Philadelphia, stated in a Medscape news article: “That means a drug that deactivates telomerase would likely work against all cancers, with few side effects.” This is huge news. Think about the chemo you may currently be taking. It cannot tell the difference between a good cell and a bad cell; it just annihilates everything in its pathway causing our hair to fall out, our mouths to burst out in sores, and other lovely symptoms.

If you are seeking hope and positive thinking, you may be more likely to find it in science than anywhere else. Don’t let “cancer research” be a phrase that you only read about on a yogurt lid. Seize your smarts and educate yourself about your own cancer. Sure it might take a little getting used to the med-lingo, but you CAN do it, and you don’t need a degree or a classroom.

Here’s a good place to start: The National Cancer Institute’s ‘Understanding Cancer Series: Molecular Diagnoses’. This slide series is so easy to read and accompanied by such colorful diagrams, if there were a sound track you would think you are watching Schoolhouse Rock.

So, what do you think? Have you ever wanted to learn more about your cancer but didn’t? If so, what has stopped you?

The best reason to head to Texas is not to clear brush with W. It is to attend Planet Cancer’s Re-Orientation Retreat. Planet Cancer is a great young adult cancer organization, which has been known to talk about vomit and dating in the same breath. I have spent years scouring the country locating young adult cancer resources and this organization is the cat’s meow.

At the retreat you’ll enjoy rock climbing, movies, good food, and the company of great people who know what it is like to be bald and have track marks up their arms for reasons other than heroin. Their FREE retreat is for 18-25 year olds who have or had cancer. It will be held in Temple TX, October 31st – November 2. Not only is the entire retreat free, but they also offer free travel scholarship funds to get you there. Click here to apply.

Feeling shy and want a preview of what the Planet has to offer you? Visit myplanet.planetcancer.org – the young adult cancer version of my space where no subject is off limits. warning: it is addictive.

Have any of you ever been to PC retreat? What was it like?