18 April 2009

I am Un-Chain, Chain, Chained....

Whew! I received my last dosage of the week yesterday at 7pm. It was fairly uneventful, thought I did have a really fitful sleep afterwards. I'd taken meds to knock me out, but after staring at me rolling around like a beached whale for awhile my husband said, "It's not the meds... it's the weight you can't deal with. " I think he was right. Gaining 5 pounds a day isn't so easy to manage while dealing with the jewelry box knot of tubes hanging from your chest, in a bed that's straight out of the Craftmatic adjustable bed catalog circa 1985. (Weren't they the same thing without arm rails?)

Anyhow, I was just a little cranky, but I woke up this morning knowing there would be no dose. Us cancer folks get weekends too! My handy doctor showed up to say we could take my central line out thus stopping the waterfall of fluid filling my face AND disconnecting me from "the machine." Yes, I've also listed to a little Pink Floyd during this little journey. Taking the line out took 2 minutes and was painless. I slapped a garbage bag over it and took a shower five minutes later.

The rest of the day I'll spend recovering (being bored) with people (who expect to see my sitting in a wheelchair with a joint in my hand) stopping by to be sure I've survived. I'll tell you this, it's not easy, it's not the kind of flu you get where you say, maybe I'll be able to go to work tomorrow, but it's not the most horrendous week of my life. That week is squarely placed on all those long days of diagnosis and confusion that lead up to this.

So, if you're jumping on board for IL-2, here are a few things I suggest bringing with you to make your stay more comfy:

- Your own pillow, pillowcases and super soft blanket. Having my own bedding really helped. I didn't wash it beforehand so that the reverse side of the pillow always smelled like home.

- Your own towels and washcloths (great when you have a fever.)

- Your own toilet paper .... do I need to elaborate? Better yet, baby wipes.

- MOISTURIZER! This process reeks havoc on your skin. I seemed to prevent much of the flaking and chafing by using rich creams. A friend had given me L'Occitaine Leg Therapy Lotion which did the trick, and I was using Rosebud Salve on my lips, any dry patches, etc. I got some Burt's Bees trial size wax based stuff as well which worked well on my hands and chest. The nurses kept saying my room smelled so good.

- A small humidifier if you have one.

- For clothing, bring the soft stuff. Your broken in PJ's. Anything button down that you can get on and off around your tubes is great. I spent one night with a tank top hanging from my fluids tube because I didn't want to wear it but was too lazy to call to have someone disconnect me. Plush socks and slippers are also a must. Also, try to layer. If you're feverish you'll want to strip down for everyone (so, nice underwear too.)

- I also brought nail polish and files in case I got bored. A couple of books, trashy magazines to share wiith the nurse desk, a deck of cards, my ipod, obviously my laptop, and some DVD's. They let you bring in food and stock a fridge in your room so use it! You won't be hungry, but you can at least have what you like to drink and snack on in there.

- Most importantly, if you are lucky enough to have a spouse, family member or friend who doesn't mind camping out on the floor of your room... do it. Dade and I lowered my bed so that the bed and cot were almost level and it could feel as normal as possible when one of us would wake up, or kick a leg over and feel the other one there. I looked forward to him getting there every night with movies and popcorn even if I only made it through the opening credits before passing out. It was like some really ghetto, "I live in a really weird studio apartment" date night and I know that I will cherish the way he made me feel this week for the rest of my life.

- Lastly, bring an attitude that you're going to need to be open and let people know what you need. If you start feeling nauseous, don't decide it might go away. Let someone know. They'll fix it. Minimize the misery and you'll make it through,

I'm sure I'll add to this as I think of other things in the coming weeks, but it's a good start. The most important thing to pack is the support of this people around you who keep telling you over and over again how strong you are! I thank them from everything within me for doing that.

By the way, if you want to read another blog on this, visit Angelo's blog. He's another thirty-something from New Hampshire fighting the fight. He's also just a few doors down from me on this floor, and has the male perspective covered. We're wishing his great success!

1 comment:

angelo said...

Hey Rebecca, I was down the hall from you last week and meant to come by and say hello but every time I walked past your room the door was shut. I figured you were having a rough time.

It was week 2 for me and man, it was brutal. The side effects come much faster the second week.

Sorry we missed one another. I am glad to read that you made it out OK. I'll check on you from time to time.