- August 28, 2010 at 6:54 pm
Hi Kevin, here's some ideas for IL-2. I'm a 59-bag veteran. I'm 35 so I have a good "young person's" perspective.
First, is your beautiful new wife staying at the hospital with you? I found it enormously helpful to have my husband around both for the mental and emotional support of just being there, and for practical things. It's tough to get out of bed and move around with the IVs, so it's nice to say "honey, can you bring my some water/my toothbrush/a book/change the DVD?" Also, when I was throwing up, which I did a lot, it was great to have him there to bring me tissues, a fresh empty basin, etc. He was able to be much, much more responsive than the nurses because he was always there.
For nutrition…I got very nauseated and couldn't eat much at all, regardless of how much antinausea meds they gave me. Maybe you'll do better. Plan on losing 5 lbs body mass and gaining 25-30 lb water weight. The couple of things I could reliably eat were canned peaches, popsicles, flat ginger ale, and oyster crackers (you know, the little round mini saltines). Look for the brand of ginger ale made with real ginger; it helps a little with the nausea.
Wear sweats to the hospital because you won't fit in any clothes when you go home. If you happen to have too-big shoes, wear those too, because your feet will be swollen when you leave. (I pulled the orthotics out of my running shoes and that left enough extra room to cram my feet in.) It's summer now in the US, so sandals would work too. It was winter when I went.
Make sure you have good lip balm for your time in the hospital. Wet wipes are nice because they don't typically let you shower, and sponge baths aren't all that much help. Body lotion – I used it some while in the hospital, but used gallons once i got home. Have your wife go find you some heavy-duty stuff that doesn't smell too girly. Also, I know it's not manly, but really consider the Dove Sensitive Skin body wash for your showers once you get home. IL-2 really screws with your skin, and the more gentle and moisturizing your shower stuff, the better.
Bring brainless stuff to do in the hospital. Easy books (I read some Harry Potter until the longer books towards the end of the series got too heavy) or DVDs (Alf sitcom, anyone?!) are nice. Bring your own pillow if you can.
Once you get home – take it easy, the water will come off in a few days, and you won't feel so bad. My pattern was one week in the hospital, one week recuperating at home, one week feeling good, including some running & biking to work out, back in the hospital for a week, another recuperation week, and then 3-4 weeks feeling good before starting the next cycle. The thing about IL-2 is…it hits you like a mack truck, but you do feel better relatively fast.
OK, this is getting long. Stay optimistic and fight hard.
KatyWI, stage IV NED 4 months