Wednesday, December 8, 2010

It Feels Like the First Time: Chemo Virgin, No More

National Cancer Institute Booklet



Today was chemo #1 (of 6).  Last week I attended a chemo orientation with a couple of guys who have different kinds of cancer.  The pharmacist and one of the oncology nurses went through a power point presentation (long time since I've seen one of those, and my auto response is to practically fall asleep when someone reads directly from the slides, but I paid attention).  

We were each given thick folders with a print-out of each component drug in our chemo, what it does, and the possible side effects, which was nice.  The rest included several booklets from the National Cancer Institute, like the Eating Hints booklet, above, and Chemo and You.

It only takes a quick glance to recognize this is the work of the government, and is possibly illustrated by the original artist who drew the Food Groups Charts you were given to color in grade school.  I understand that these things need to be relatively straight forward, but the whole look and tone seems so retro and unnecessarily dull and uninspiring.

I saved this helpful recipe, for Banana Milk Shakes, for the future:

Banana Shake: Banana, Milk, Vanilla - Blend
 I thought I recognized it from my Betty Crocker's Cookbook for Boys and Girls: Facsimile Edition, but alas, a far more appetite stimulating version is there, for a chocolate fudge milkshake.

At Chemo Camp, we were given a guide to side effect supplies: Immodium, Senakot-S, Biotene Mouthwash, plus the recipe for a baking soda mouth rinse, and instructions to up the oral care to at least five times a day. The tissues of your mouth and throat are fast growing (like your hair, hence your ability to overcome the dreaded hot pizza roof of mouth burn pretty quickly - which of course makes them vulnerable to the non-discriminating chemo drugs).

Of course it looked like I didn't know if I was coming or going at the pharmacy check-out, and I couldn't get White Rabbit  lyrics out my head (One pill makes you larger, and one pill makes you small). 

I bought not one, but two thermometers, that for once are not destined to be poked into cooked meat, because I have to make sure that my temperature does not hit 100.5.  Or I could apparently die, as my straight shooting doc informed me.  If it does, I am supposed to call and I will be fast tracked to be admitted and pumped full of antibiotics, hopefully bypassing the germ fest and moaning known as the emergency room. 

Starting Sunday evening, the dreaded Lake Effect snow started heading this way.  If you are lucky enough to live in California and not experience this phenomenon, it works like this:  Mass of cold air moves over large body of warm water, drops lots of snow, usually in fairly predictable areas, known as the Snow Belt.

Akron is about 30 miles south of Lake Erie, so it's usually more like the Snow Muffin Top - it really depends on which way the storm sits (so to speak), as to whether we get the big, lumpy inches that our friends in the belt get.  Sometimes, with a good Nor'Easter it'll blow over Cleveland and land here instead.  It funny sometimes to drive on the highway and see the dividing line between the snow have and have nots.

It fell steadily overnight Sunday, and there was at least 6-7 inches yesterday.  My newly hired plow guy didn't show until around 9:00 pm (I called and gave him the heads up I had chemo today and needed out).  I did call my rides and debate moving my appointment to Wednesday.  I actually called and tried to move it; no dice.  This morning there were 2-3 more inches, but it was super light and fluffy, and my ride had 4 wheel drive.

I had already packed my Tami Goes  To Chemo bag with so much stuff my friend said I needed a chemo wagon.  A couple of new magazines, a notepad, a hand knit scarf/shawl, my new construction worker thermos with hot water for tea and oatmeal, tea bags, milk, cottage cheese, grape tomatoes, a can of lentil soup and a micro mug, napkins, utensils, disposable bowl, a banana and a clementine, and my iPad.

I was told to fast so I could give blood for my clinical trial (which is Acety-L Carnitine or a placebo, which I am now taking 3 times a day), so a friend picked me up so I get it drawn early, then eat breakfast.  Since my port had yet to be initiated, they attempted to get the blood from the same vein on the top of my hand as the last time.  No dice, well nearly dry,  and they barely got enough to make dirtying the needle worth it.  After a little hand wringing on the nurses part, I was allowed to eat, and they agreed to get more blood once the port was ready to roll. 

I barely finished my oatmeal, when I was summoned to Chemo Land, and weighed, then parked in the first chair by the door.  There are two areas, one on either side of the lobby, at the Akron General McDowell Cancer Center.  It's arranged cubicle style, each with a recliner, a guest chair, room for rolling/hanging IV stand, and not much else.  Including my running away from home supplies.  Partial walls offer privacy, and there wasn't a whole lot of action in there today, maybe 6-8 more people came in after I did.

There was some confusion regarding my orders which related to the clinical trial, and that took a bit to sort out, then more first date ice breaker visits by the pharmacist (aka Chemo Camp director), who went over my drug components, Taxotere, Carboplatin, and Herceptin.  I will be getting a total of 18 Herceptin injections, which is a targeted drug looking for HER-2 cells like Ms. Pac-Man, and doesn't cause hair loss and puking.  Speaking of which, pre-meds were doled out for nausea prevention, and instructions for staying ahead of it with my prescription meds were outlined for the days ahead.

I was also visited by the social worker, who I'd met with briefly before to talk insurance coverage (they checked), and various and sundry programs that might help me out with the bills.  Which are mounting.  I am hoping I can get some help when I have to meet my $2,500 deductible AND $2,500 co-insurance maximum AGAIN next year.  I'll break it all down in a separate post, but there are currently about $35,000 in bills for the surgery in process.

I had remembered to 'butter' my port with anesthetic cream when I first arrived. My main nurse of the day, disinfected the port, then initiated it with a bit of poke, then flushed it out with saline and attached the doohickeys (technical term) for the IV.  She collected blood for the trial and blood for pre-testing to make sure I was good enough to poison. Once I was done flirting with the pharmacist and the social worker, and the orders were sorted out, it was time to get down to business.

Drug #1 was hung by the stand with care, a dripped away without incident for about an hour.  My friend Lisa hung around for most of this fun, so I really didn't break into my stash as deeply as I'd anticipated, save a bit of surfing on the iPad, until the Wi-Fi got too sluggish. 

I had hoped to dig into my Kindle copy of The Emperor of All Maladies: A Biography of Cancer, which got great reviews in both the Akron and Cleveland papers, which threatened to suck me in for the duration when I started reading it after I downloaded. Company was nice and made it go faster.  I had green tea, and the banana, cottage cheese, and some grape tomatoes.

Drugs #2 and #3 each took about a half an hour each, and I had a friend change-up in between, when my friend Debbie, arrived. I met a few more of the nurses when my original went to lunch. So I am already like Norm at Cheers there.

My variations on the lime green theme, down to my OPI Shrek Forever After Collection Who the Shrek Are You? B92, pretty much brands me as memorable. I got a lot of compliments, but wouldn't be surprised if I was referred to as Kermit behind my back.  I sort of brought it on myself, I suppose. I got to show off those toes all day, because in an effort to keep the tootsies cold, and keep the circulation down, to help hopefully prevent a potential side effect of tingling tootsies, I went bare, except for the few times I shuffled to the bathroom, dragging my stand behind me.

Uneventful all in all, made my appointment to check the white counts and 10 days, and was out by 2:30.

We stopped at West Point Market on the way home, and the ready to cook Parmesan Cod looked like a safe bet for dinner.  But when we got it home, as soon as I reached into the bag, I was greeted with a not so fresh fish aroma, that permeated the plastic container.  At first I had Debbie put them in a freezer bag and put it in the garage fridge, then I defaulted to 'get that smelly crap in the trash'.  (Yes, I should return it, but carrying off fish in the car seems kind suicidal after you've just been pumped full of chemo).

So I ended up eating some already cooked pasta and sauce that was in the fridge, and I had a chocolate chip cookie from Mustard Seed, along with some tea and a lot of water.  Brushed and flushed with Biotene.

So far, so good.  It's still a waiting game.  Waiting for the actual chemo is over.  Waiting for signs of side effects begins.  It's kind of like riding the gondola through the haunted house waiting for the boogey man and the lady with knife sticking out of her skull to pop out and scare the pants off you. Or cranking the jack-in-box waiting for the punch in the face.

December 7th, a day that will live in infamy. (I was actually at Pearl Harbor on the 50th anniversary for my honeymoon; a surreal experience which included taking Japanese tourists photos at their request).

I learned that Elizabeth Edwards lost her battle with breast cancer this morning, probably as I started chemo.  She fought a strong, brave battle, and had more than her share of other trials to deal with.  God bless her, and her children.

There was also another mouse massacre. Smokey, the elusive, always spooked kitty snagged one by jimmying the brick around a register and plucked one out like a pro.  Then disappeared. 

Staying pretty zen, and praying for the best. And hey, I've got bananas and non-lumpy milk, if I could only find that shake recipe.

3 comments:

  1. Tami, I am following your story with great interest. May your chemo be quick and your side effects minimal.

    As I read your bit about the simplicity of the banana milkshake, it reminded me of another, even more simple recipe, this one from Rachel Ray:

    Late Night Bacon Recipe

    Honestly, if it gets to the point where you need a recipe on how to cook bacon, perhaps it's time to hire a cook.

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  2. Tami--you got way more info and advice than I did pre-chemo!! Although, check the date on that cookbook. I was handed one from 1995--and um, they've learned a lot about cancer and chemo since then.
    On the other hand, when my dog went through chemo--I was given all sorts of up to date and helpful information!
    Best of luck with the side effects. It sounds like you are getting good care and advice and that should help.

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  3. Thank you for the information, Tami. I'm headed to chemo tomorrow for my mom's first treatment. I have no idea what to expect so I appreciate the insight...and the humor.

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