May 31, 2009

Cancer and Greener Cleaners

cleaning-lady

I try to reduce my exposure to household carcinogens without entering the territory of enviroparanoia.  I buy products that are inexpensive, free of scary ingredients, and don’t have heavy perfumes or essential oils (I just don’t like the smell).  I also like products that actually work.  Buying something green that only does half the job is just a waste. Here are the products I like and a few I don’t:

Dr. Watkins – All purpose cleaner, lemon scent, available at Target.  Cleans counters, tile, bathroom, entire kitchen.

Bon Ami – This stuff has been around for 120 years.  That’s before most scary chemicals were even invented.  It works like magic on my tub and faucet handles, and cleans super skanky pots and pans like a dream.

Vinegar and Water – Cleans windows, hardwood floors, and mirrors.

Automatic Dishwasher Detergent -  Ecover and Seventh Generation have failed to do the trick. Instead, we’ve been using Cascade, which seems like it belongs in a super fund site. Any recommendations?

Has cancer or any other illness made you more conscious of the cleaners you use? What are your favorite green cleaners?  Which ones don’t you like?  Can you recommend anything for my dishwasher dilemma?

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May 29, 2009

Cancer and Medical Debt

deep-debt

Is talking about money just too taboo?  Why in the young adult cancer world do I never ever hear anyone talking about medical debt?  It’s a crying shame because we’ve got plenty of it and it seems that a bit of conversation and education is in order.  Consider these factoids:

* More than 35% of all young adults have problems with medical bills including getting calls from collections agencies, paying off medical debt, or having to seriously alter their life to accommodate for medical expenses.

* Out of every age group in the United States, 18-34 year olds have the most medical debt.

Given these statistics, it seems likely that the numbers are even higher for young cancer survivors because we are racking up mega medical bills.

I’m going to make a series of blog posts about how to avoid and resolve medical debt, information about credit card usage for cancer patients, and where to get good credit counseling.

But before I dive into these issues, I wanted to pass on a suggestion from Joanna Morales, legal guru at the Cancer Legal Resources Center.  She says: Sometimes medical debt is the result of other unresolved medical issues such as unemployment due to discrimination or other issues around disability.  How can you get out of debt if you don’t look at the root of the problem?  Brilliant idea.  Contact the Cancer Legal Resource Center (866-THE-CLRC).  They are amazing and will help you brainstorm around the factors that are contributing to your medical debt.

Do you or have you ever had medical debt?  How often do you think about it and what impact does it make on your life?  Does it change any of the decisions you make about your care?  Is this something you discuss with friends, in cancer support groups, or talk about online?  If not, why not?

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May 28, 2009

Second Opinion on Lab Results

A few years ago, I had my doc ask for a second opinion from a second pathologist, who interpreted lab results differently than what the original lab report read.  This is a big deal when you are talking about cancer.  The words “second opinion” are used during the first weeks or months of cancer when we are setting up shop with our docs. But you can get a second opinion anytime you want (or anytime your insurance will cover it!)

Check out this short video. I was so drawn in, I felt like I was watching a full length documentary. I wanted to stay glued to the screen for an hour with a bucket of popcorn.

The gist is that Myriad, company in Salt Lake City, owns a patent on a few of your genes (BRCA1 and BRCA2) that show your likelihood of developing hereditary breast and ovarian cancer. What’s the big deal?  They are the only company that has the rights to do research, screening, or testing of these genes, as well as developing pharmaceuticals related to the genes.  You can’t get a second opinion from another lab to make sure the test is accurate or interpreted correctly. It also means they are the only game around so if you cannot afford 3,000 buck for their test you are SOL.

This is just wrong. Hats off to Breast Cancer Action for engaging the ACLU in a lawsuit to challenge the patent that the Federal Government gave to Myriad. I fully support their efforts and hope that they kick some ass.

Have you ever sought a second opinion beyond your initial diagnosis and choice in doctors? Have you done or would you do genetic testing? Would you want these tests performed by multiple labs to verify accuracy? What do you think of the ACLU’s suit?

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May 26, 2009

Cancer and ANXIETY

southwest-flight-attendants

If you’ve read Everything Changes, you know the saga of my sudden onset cancer claustrophobia.   Since cancer, sitting on an airplane feels to me like the Star Wars trash compactor scene.  I’ve chalked it up to either post-traumatic stress disorder, or the anxiety that can be a common side effect of the high doses of thyroid hormones I’m on.

Over the past couple of years xanax has become my flying friend.  Without xanax I could not have flown to my San Francisco surgery, checks ups at Memorial Sloan Kettering, or to see my friends and family.  I also only fly Southwest because they are super sweet and let me sit in the front row where I can see the door.

But something totally odd has happened: with no explanation, my raging claustrophobia has quite suddenly simmered down.  I’ve flown xanax-free on my past four trips to speaking engagements and book parties.

This past week I was speaking in Pittsburgh.  I woke up one morning on the trip and in that limbo morning mind state of half-dreaming, I confused being wheeled into surgery and getting anesthesia with boarding a plane and flying.  For just a moment, the two were the same.  I started freaking out, but my phone rang and woke me up.  It was amazing to see my two fears come so head to head in my mind.

I am thankful that my mind is chilling out.  And, I’m really curious about the mystery of what has made this go away.  If I knew, I’d share my secret.  Have you developed any fears or anxieties since your diagnosis, or as the result of any other illness or trauma?  How have you coped with it?  Has yours ebbed and flowed?  Ever suddenly receded like mine?  Does anxiety ever hinder your daily activities?

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May 24, 2009

Sex, Sex, and More Sex

notoriousbettypage

Mark your calendars. Monday, June 8th, 9 PM, EST for the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We will have three experts on air focusing for an entire hour on cancer and sex!

I got a great email today from a blog reader who was writing me about some issues down there – mostly feeling like she is popping her cherry every time she has sex with her spouse. These down and dirty sex issues are real problems and we have few forums in which to talk about them and receive expert advice.

So, over the next few weeks, I’m going to request that you leave in the comment section of my blog questions you would like to have read on air. Remember that there is an anonymous option in my comment section, so nobody will ever know who you are and you have carte blache to ask whatever questions you like.

Be as graphic, real, and hardcore as you need to be. Sage Bolte is one of the experts. I interviewed her in my book Everything Changes and believe me – NOTHING is too graphic to discuss with this woman.

We all look forward to reading and hearing your questions!

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May 22, 2009

It’s All In Your Head

psychiatrist-couch

Psychosomatic.  There I said the word.  Did you cringe?  I would think most young adult cancer survivors might.  Many of us had delayed diagnoses because our doctors thought we were hypochondriacs, too young for cancer, and it was all in our heads.

Take for example Mary Ann Harvard, who is the fantastic It Girl in my book.  Her docs told her that her fatigue and difficulties breathing were all in her head.  They even gave her a referral to a psychiatrist.  I bet they felt like big assholes when it was finally discovered that she had a tumor in her chest the size of a football.

But, over the past few years I have begun to explore the notion that some of  my fatigue and aches and pains are sometimes caused by stress and worry.  This seems like a Pandora’s box to open as an advocate who fights hard for our medical needs to be taken seriously, but here I go.

I don’t think that my fatigue and pains are always in my head.  But I do think that stress hormones can do a number on my body.  I have begun to notice my stress level and a correlation between how I feel physically.  At first I wanted to deny the connection because I felt it discounted my experience as a cancer survivor.  But it actually helps to notice when my stress is impacting my health and modify my behavior.  I don’t chalk up all of my pains and fatigue to stress, but I am training myself to recognize the difference between stress and a separate physiological illness response.

Does the word hypochondria make you cringe?  Were you ever accused of being a hypochondriac prior to your diagnosis when your symptoms were arising?  Do you ever notice a link between how your feel mentally and how you feel physically?  What do you do about it?

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May 20, 2009

Single or Unmarried During Cancer

frog_small

I talk and write an awful lot about the loneliness of being single during cancer.  Yep, I’m married now, but I went through four years of cancer singledom before I met Shannon.

Being married means more than having someone to hold you after a horrible day at chemo.  Check out all of the perks afforded to married couples: Spouses get visitation rights, smoother application of  power of attorney, and can get our meds from the pharmacy no questions asked.  Spouses get to share insurance benefits and might even get special tax breaks.  Spouses have the built in support of sharing possessions, expenses, and are often built in caregivers.

I’m damn lucky to get these pluses and feel it is totally jive that single people and unmarried same sex partners don’t.  Here are some resources that, while they are a tiny drop in the bucket, are good ones to check out:

Hospital Visitation Authorization Document from the Human Rights Campaign – Instructs your doctor, care providers and hospital staff about who is allowed and given priority to visit you if you are hospitalized.  This is a great document, but as we have seen in recent news about a lesbian woman who had power of attorney and was still unable to visit her dying partner, these documents don’t always work in every real life situation.

Breast Cancer Recovery Infinite Boundaries Retreat – Special retreat for women who are or have gone through the experience of breast cancer without the support of a spouse, partner or significant other.  They have already held their session for this year, but I’d get on the mailing list so you can find out ASAP about next year’s – it fills up fast!

Are you/ were you single or unmarried during any part of cancer?  What were your biggest challenges?  How did you work around them?  I only mentioned the negatives.  Are there any benefits to being single or unmarried with cancer?

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May 17, 2009

Grey’s Anatomy: Fact or Fiction?

izzie1

Disclaimer: I live under a rock, don’t own a TV, and have never read a print copy of USA Today.  I’m pretty okay with all three statements.

Kudos to Grey’s Anatomy for: showing young adult cancer along with family and fertility issues, illustrating melanoma as a serious deadly disease, and revealing that advanced cancers do not have a quick fix solutions but involve super challenging choices between two evils with no guarantee for favorable results… if you are lucky.

But, damn Grey’s for not getting it right.  An article in USA Today says Izzie’s options not accurate: surgery, with memory loss as a side effect, or interleukin-2.  American Cancer Society confirmed that IL-2 is never recommended for melanoma brain mets because it can cause bleeding and strokes.

Grey’s consults with MDs, so why can’t they get it right?  Are they just dialing up the drama on the storyline?  I’ve been living with cancer for nine years and there is plenty of drama to go around with my story just from the very accurate and real life details.

Does Grey’s do more harm than good with this storyline?  Good: It spurs discussion and awareness.  This article highlights one of my all time favorite orgs, Planet Cancer, and quotes JT, one of the most amazing people I’ve ever met.

But consider this quote from Otis Brawley, the chief medical officer at ACS: “Many people view the cancer problem as much simpler than it actually is. That’s because they get their medical information from television shows. But television shows are by and large fictional, and much of the medical information there is also going to be fictional.”

Do you watch Grey’s?  Does the storyline do more harm than good?  What does it say that instead of covering healthcare policy, a major American newspaper is covering the TV coverage of a fictional cancer patient?  And have I just lowered my standards by blogging about a USA Today article?

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May 15, 2009

Standing Up To Your Doctor… Naked

dog-gown

I loved Michelle’s response to my post Fashionable Hospital Gowns? It begs the question: How do we take control in a doctor’s office when our tits’n ass are hanging out? Here are some of my tactics.

When the nurse hands me a gown to change into  – I don’t.  Instead, I wait fully clothed in a chair until the doctor enters. (I often work at their desk, which is productive and beats sitting half naked in fear on a vinyl table.) When the doc arrives, we talk about my symptoms/concerns and review labs or scans. Then they leave and I change for the exam.

Some docs hate when I eat up their time with these extra entrances and exits. Frankly, I don’t give a damn. The more comfortable and in control I am at my appointment, the better we will communicate. Good communication reduces the likelihood of phone tag or extra appointments to clear up misinformation.

After the exam, I always get off of the table. I sit in a chair, walk across the room, or if there is no space I just stand up in front of the table rather than sitting on it. I’m a professional choreographer and believe that where you stand in space can manipulate the focus, power, and control of a scene.

Also, if I walk over and pick up my underwear and start putting it on, male and female docs usually bolt for the door and return in a minute or two for conversation when I’m fully clad.

Do you ever think about where you sit or stand and your body language or eye contact during conversations with your docs? How do your docs react when you change up the routine and try to approach things more on your own terms? Are these suggestions practical for your situation?

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May 13, 2009

Going Greener

grass-covered-car

Shannon and I are ditching our car for two months and seeing what life is like.  (Evil Chicago potholes caused $1,800 of damage to our car, and we don’t want to shell out the cash to fix it.)

In a way I’m glad – it is forcing me to actually do something that I often complain about: get serious about cancer and the environment.  Did you know that four major chemicals released by car engines are proven to cause cancer in animals and humans?

I’m not going to change the world or reduce young adult cancer incidence rates. In fact, I think it is dangerous to think that individual actions, like using CFL light bulbs or buying eco-crap, are going to solve the decline of our environment.  Nope, for that we need tougher regulations on car emissions, investment in public transit, and more walkable communities.

But until then, I am glad to be trying out a life that is just a tad bit less hipocritical…. how can I bitch about cancer and the environment while I’m driving my car everywhere?

Having no car has been an adjustment and sometimes frustrating.  But there are some big time benefits too: I get more exercise, meet more neighbors walking, and read more and see cute kids on the bus.  Plus we joined a non-profit car share so we have wheels for big errands.  This would not have worked if I still had treatment fatigue, and I might not like it come winter.  We’ll see…

How often do you drive? Do you ever equate daily activities of your life with carcinogenic output?  If you have had major illness, treatment, surgery, did it affect your driving habits? Have you ever used the American Cancer Society’s Road to Recovery program?

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