Precautions

Hellish night last night. Didn't sleep until after 3 AM, due to pain from a symptom we really don't need to discuss. Nothing life-threatening, just painful as hell. Now I have two new bottles of drugs.

Stayed in bed most of the day until mid-afternoon, when I felt rested enough to try some exercise. 12 minutes at settings 2 and 3 on a recumbent bike. Six weeks ago that would have been an easy warm-up. I'd barely have noticed it. Today it drove my heart rate to 145. After that, an hour of yoga. Managed my first inversions in 2 weeks: headstand, shoulder stand. Wow did that feel good, but it wiped me out. Savasana felt like what it means: corpse pose.

I'm still quarantined upstairs while Gabrielle gets over her cold. Only at night, though. During the day we've dropped the face masks, since she's not coughing or sneezing and Luka's well. My great friend Todd has been visiting from California. He got sick too, two days after arriving, but now seems to have pulled through it. Fingers crossed I don't catch it.

Everybody's using Purell and washing their hands obsessively. We don't let anyone in the house without wiping down face and hands with disinfectant. Mostly nobody's come inside anyway, other than our housecleaner. Except for walks outdoors and trips to the hospital, I haven't visited public spaces at all since chemo started almost two weeks ago. Drove to Walgreen's twice to pick up prescriptions, but there's a drive-through window so I never went inside. If I handle a pen somebody else has just used, I Purell my hands afterward. Luka's poor little hands are beet red and painfully chapped from the constant washing.

There's much more. We use paper towels for everything, except bath towels, which we use only once before washing. Rubber gloves for dishwashing. Lysol wipes for kitchen counters and bathroom surfaces, also doorknobs and light switches. I wear a NIOSH respirator every time I go down to the basement, since we've had occasional mold problems. At the hospital I wear my NIOSH mask, and push elevator buttons by shielding my finger with a shirt sleeve. When Luka comes home from school, Gabrielle makes him change clothes and wash before he can see me.

We backed down on the most puritanical food precautions after hearing, from both a nurse and our doctor, that the restrictions on fresh food weren't necessary. Research data show no difference in infection rates with patients allowed to eat fresh vegetables, peelable fruit, etc. The only things to avoid are uncooked vegetables, unpeeled fruit, raw fish, raw meat, hamburger (because it's heavily handled in processing), eggy stuff like potato salad and egg nog (salmonella risk).

All these precautions seem insane sometimes, but only until I start digging into the medical literature. About 30-35 percent of HCL patients get some kind of infection. I'm no exception; I came down with a mild case of thrush, an oral fungus that makes your tongue look like a dirty white sponge. Nystatin's keeping it down (blecch; tastes of metal and saccharin). Most infections don't get past Stage I or II, as they say in medspeak. But a not inconsiderable percentage reach Stage III or IV. You do not want to reach Stage IV. Stage V, if it existed, would be death. And some HCL patients do get there. Not many, but not none either.

Fungus, pneumonia, herpes zoster (shingles) are the most common. On Monday, after they take another set of labs, I'll start Bactrim as a prophylactic against Pneumocystis jirovecii, a fungal pneumonia common in immune compromised people.

Yesterday I came across the Hairy Cell Leukemia Research Foundation. I'd actually seen the site last week and decided it was dead, but it's not. It's full of survivor stories, as well as accounts of people who went through the Rituximab and BL22 clinical trials. Some of these accounts detail incredibly serious infections: people blown up like balloons, their entire skin peeling off, other horrors you only want to know about if you're me right now. One guy had the bad judgment to blast off on an 800-mile high-intensity road trip four days before starting chemo. He got pneumonia on the second day and barely survived.

Also a lot of hope here: people who've been disease-free for 8, 10, 12 years and more. Healthy and happy. I asked the webmaster to link to this blog, since I'm hoping other patients will find it useful. (Leave me a comment if you do!)

Thanks to the wonders of Google Analytics, I see that at least 150 people have read this blog since I started writing it 2.5 weeks ago. The exact count today is 230, but some are probably duplicates, such as the same person (including me) viewing the blog from two different computers, so I discount the number a bit.