Archive for September, 2008

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Fear Factor

September 30, 2008

Lately, my brain has wandered to some pretty dark places. It’s been like there’s a series of short films directed by Tim Burton in my head that deal with loss and fading faces that really freak me out. In short, I think this is my version of fear. Anyone with this crappy disease has the big ugly thoughts; it’s totally normal. Visions of hospice, death, funerals, and (the worst) your family and friends struggling with your absence can haunt you. It’s horrifying stuff. But I don’t believe these thoughts should be debilitating. A short pity party now and again, I totally get it. But prolonged rumination on the dark side begets depression and a whole host of other crap you can’t afford. So, how the hell do we deal with the big scaries that are served up to us? This issue has been bugging me for weeks and I’ve spent quite a lot of bathtub thinking time wrestling with a productive way to handle my fear. I’m not sure I have THE answer, but a few things struck me as helpful.

Fear is a motivator. In nature, the fight or flight response protects animals from dangerous situations. It’s that instant “Yo! Lion at 3 o’clock by the lake. Run!” that saves many a zebra’s life. I think the human equivalent might be “Hmmm….that guy is much bigger than me and I’ve had 8 beers. Maybe I shouldn’t punch him for that wise-ass comment about the Cubs.” Fear makes us do stuff we don’t wanna do, but have to. We pay bills, file taxes, and go to the doctor out of fear of the consequences of NOT doing these things. It’s just part of being a grown up. You just suck it up and write the check and make the dentist appointment and clean the bathroom. Except when you don’t. That’s when fear has made you its bitch. If you’re not making that colonoscopy appointment because you’re scared or you have this idea that “If I have cancer, I don’t want to know”, well then, you’re fucked. Don’t go there. That’s when fear is holding you back instead of pushing you forward. I think it’s healthy to let fear nudge you a bit in the right direction, but not slap you into last week.

Much of my fear throughout this process has been imagining the unknown. What will chemo feel like? How much hair will I lose? Will I go batshit watching daytime television? This is where your one-on-one support pals can really help out. Imerman’s Angels and the ACS can hook you up with a survivor of your particular type of cancer that will be available to you for those important questions that your medical team may not be able to answer. I have a fab “angel” and a close pal who have beat various kinds of butt cancer and are very generous with their time and refreshingly honest. I wondered, “Will my chemo port set off airline security metal detectors?” (It won’t) and “What else is worth watching at 11:00 am besides the Food Network?” (Game Show network can be surprisingly entertaining for an hour or so.) If your pal had treatment at the same hospital, ask them about the lay of the land. Get a play by play of a typical visit and which nurses are the most fun. Then, when you walk in the waiting room for the first time it won’t seem so overwhelming.

No matter how awesome your support network is, cancer is a lonely disease. It just is and that sucks. However, chatting with other cancer patients and survivors helps me tremendously. Just sitting amongst a group of people that “get it” at a lecture or a fundraiser makes me feel less like a freak. Even when I don’t talk in my support group, there’s something comforting about just listening and identifying with folks in the same expensive, barf inducing boat. Plus, support groups are a great place to score a hook up for quality pot. When the time feels right, it’s safe to voice your own internal horror films at places like Gilda’s Club and hospital networking groups. Describing and naming my fears makes it easier for me to kick their ass. Usually, my cancer peeps have had similar nightmares and it’s not long before we can laugh at the absurdity of these melodramatic “what if?!” scenarios. Or at least chow on some free snacks until we don’t care.

I still have the creepy movie theater in my brain, and I suspect it will conduct its business throughout my life. But, I don’t have to be ruled by its new releases. In fact, I’ve hired a new director for my personal fright fest. When the action starts, I try to think “less Beatlejuice, more Enchanted April” and I’m off to a Tuscan hillside. It’s not a lot, but it’s something and it works for me. Get creative and find something that works for you.

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The perfect chemo shirt

September 16, 2008

Most folks headed to their first chemo treatment aren’t thinking “Hmmm, what on earth shall I wear?!” However, comfort and easy access provided by a well chosen shirt will serve you well. If you have a chemo port, something with a v neck will make it pretty easy to just pull the neckline to the side and let your nurse draw blood and get things taped and secure without you having to remove your shirt all together. I’m a big fan of redeeming any ounce of modesty I can these days, which I’m sure all readers can appreciate. Guys could probably get the same effect from a polo style shirt that unbuttons at the neck.

The next key chemo shirt criteria is the fit. Something loosely fitted to the body, even long sleeved, lets nurses take blood pressure readings over your shirt. It should allow you to easily push up the sleeves though in case they need access to your arm for any other blood tests or taking your vitals. And of course, all of your chemo togs should be comfy and easy to nap in. Save the Spanx and chunky belts for the club scene.

But here’s where I’d like to improve on the basics; I’d like to adorn my top with giant numbers representing my birthdate. A big ol’ glittery neon 3-16-70 across my rack might save me the constant confirmations of my birthday with every med and test administered during each visit. I know they have to ask, but it seems ridiculous in practice. Everytime I turn around, “March 16th, 1970”. I’m wondering if I could create something like my dream shirt at cafepress or some other nifty website. Maybe pimp it up even further with a snarky slogan on the back like, “Giving cancer a smackdown since May.” or “I just had chemo. How was your day?” or even “I have cancer. Would it kill you to be nice to me?”. All tempting options.

Please forward any and all suggestions for making my dream chemo shirt a reality. Likewise, feel free to post pics of your best cancer chic ensembles. You and me? We’re too sexy for this cancer shit.

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chemo 101 for newbies

September 11, 2008

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 HIPPA 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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Statistics are crap

September 6, 2008

One of the worst things you or your family can do to educate yourself is to google your type of cancer. Know why? The first thing you’ll see are statistics. And you probably won’t like what you see. But here’s the thing…statistics are crap.

Stats are figured in very broad strokes, not taking into account a patient’s age, treatment facility, etc. My “Immerman’s Angel” was given a 3% survival chance …7 years ago and she’s still NED. My best friend’s husband was diagnosed with 5 strains of rare testicular cancer and given a very grim prognosis. But that was 19 years ago. Again, still in remission. In my case, it was extremely unlikely that my ginormous ovarian mass was cancerous, given my age and history etc. But, I lost that roll of the dice.

Someone has to be in that 3% group of survivors and it might as well be me or you – young and otherwise heathy folk. Likewise, there are probably cancers that have a 90% survival rate, but sadly, some people fall in the other 10. I think stats should stay in medical journals and have no business in patient counselling. They can give you a false sense of complacancy or a false sense of doom.

Every body is different. Ask any doctor – your attitude is more powerful to your healing that you know. That’s why I created this blog. To educate and empower myself and others to beat “the odds”.

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Some Pinot Noir Awesomeness

September 1, 2008

A few nights ago, I dropped in to the Chicago Chop House for a drink and some fried calamari – a dish my husband won’t eat, so I never get to order it unless I’m by myself. After my tasty Champagne and fried seafood fix, I had some time to kill before my dear hubby could pick me up. I decided on a glass of the latest Pinot Noir from Truchard Vineyards in Napa. The Truchards have been growers for lots of luxury Napa brands for over 30 years, but made some lovely wines under their own label starting in 1989. They are lovely people and I hear Joanne Truchard makes an incredible pie. (Long story for another time.)

 Holy cow.

I was intending to just sip and enjoy without “evaluating” the wine, but this luscious beauty demanded attention. I was simply overwhelmed by the complexity of aromas: cranberry, wild strawberry, cocoa, black pepper, and nutmeg. The texture was rich, smooth, and thouroughly luxurious. I was spellbound.

So, the wine is in the $35-40 range retail but worth every penny. Get some before I clean out all the local stores.