Renal Cell Live!

Thursday, February 22, 2007

Maintenance and Monitoring

We've returned to life as normal following the snow, so yesterday I went to 2 appointments in Columbus that were rescheduled from the previous week. First up in the morning was the regular Aranesp/Zometa tango, with a twist. My hemoglobin level was 13.4, so again, no Aranesp needed; but this being the third session with elevated levels, I'm officially off Aranesp for the first time in over 2 years!

In the afternoon, I met with Dr SC for the first time since summer. He informed me that my creatinine level is slightly elevated, indicating that my remaining kidney isn't working as efficiently as it has been. As Zometa's side effects include depressed kidney function, he is taking me off Zometa, substituting a 4-week followup for labwork in place of the infusion. We'll continue labwork on a 4-week rotation, and resume Aranesp and/or Zometa as needed based on monitored results. I'll still have to get poked, of course, but I won't miss the injections and infusions. I suspect my insurance company won't miss them either: without these drugs my maintenance costs drop from $20,000 a month to about $9,000 a month.

What did I do with the 4-hour break between appointments? My friend and sister Mary drove down with me, so we met friend CR for lunch and discussed her involvement with the Central Ohio Fiction Writers. Then Mary and I checked out cookware at TJMaxx. Her kitchen remodeling is nearly finished and she's got to replace some pans to work with her new cooktop; I need to replace some of my 30-plus year old bakeware. Shopping, oh darn ...

Labels: , , ,

Wednesday, February 14, 2007

What Makes a Blizzard?

It's finally stopped snowing here - we had from my count at least 29 hours of continuous snow (with some sleet mixed in), resulting in 18" and accompanied by high northerly winds. There are impressive drifts around the house and, unfortunately, across the lane. I rearranged doctors' appointments scheduled for today, tomorrow and Friday such that hopefully I won't have to depend on being able to get out and about, as there is some doubt I can accomplish that feat. Perhaps my favorite contractor Jerry can come dig us out. Fortunately we've not lost power (touch wood) and there's plenty of food in the house; remnants of preparedness, born of growing up in the country. Oddly enough with all this weather going on, our county was never tagged for the persistent blizzard warnings from the National Weather Service, though all the surrounding counties were. I'd no idea that blizzards respected county borders.

Saint H is riding out the storm in Columbus, so Duke and I are left to our own devices. Duke has divided his time between the bedroom and the guest bedroom, with time out on the couch with me. Oh, wait, that's normal for him. What's not normal is for his dad to be missing from the couch in the evening; he's noticed, but seems only to be curious about it, not distressed. All the same I'd like for everything to get back to normal - soon.

I was doing well, sleeping without sleep aids, until the storm hit. Perhaps tonight will take me back to uninterrupted sleep. Ironically March/April AARP magazine features "No-Pill Sleep Plan / By Susan Roberts - Our guinea pig author enlists in boot camp for the sleepless. Plus: Nine power tips for a good snooze", and it arrived the day following my post. [The article isn't currently online, but is likely to be posted next month]

Labels: , ,

Wednesday, February 07, 2007

Mania for Insomnia

Well, crap. I seem just to be falling apart bit by bit. With Dr G's blessing I stopped taking my Ambien because I was having nightmares - classic thrashing about and shouting, very few of which I remember (fortunately).

Now I'm having trouble sleeping more than 2 or 3 hours at a time. I'm untangling some bureaucratic mess over a possible new prescription, and taking some samples of Rozarem that Dr MC gave me. That knocks me out pretty completely and makes me feel groggy for hours after I wake up.

I've always been a light sleeper and generally look forward to being awake, for good knitting or reading time; I once made afghans for my mother and sister during a long winter of insomnia. I'm glad that Saint H generally sleeps through my waking periods, though at least once during each episode he will pad into the living room, bleary-eyed, to make sure I'm all right. But I don't like having this repeated night after night after night ...

Is there some balance between not sleeping and not waking fully? If so I haven't managed to find it. We'll see what develops.


Friday, February 02, 2007


I've been dealing with intermittent blistering on my left foot from neuropathy, a common side effect of Nexavar. It hasn't been terrible, and remedies to date have included padding my left big toe with roving. On Monday in Cleveland I picked up a prescription for Biafine, a topical emulsion that softens the skin and reduces the irritation.

On Tuesday my thumbs were both slightly irritated and sore; by Thursday they were blistered at the joint and quite painful. I was barely able to bend my left thumb. So I've treated them with Biafine and have them bandaged - they feel better but not great.

Have you ever stopped to think how wonderful opposable thumbs are? Probably not - it's something we all take for granted. My dad lost half of his left thumb in a farming accident in the '40s and I never thought about what he had to do to compensate for that. Well, it's come home to me now. I can't open jar lids, can't open pill bottles, can't open the blister pacs for some of my medications. I can't unscrew the lid on a bottle of water or a soda. It's hard to tuck my shirt into my jeans. It's hard to pull my socks up. In short, we use our thumbs in concert with our fingers for so many things that it's hard to function without their full use.

Fortunately it hasn't stopped me from knitting. However, I will be stopping the Nexavar for a few days to get this under control, before it goes any further. Dr G and I had already discussed monitoring side effects and doing occasional stoppages; looks like it's time to start my record-keeping. Nobody has firm data on whether stopping Nexavar for short stretches lowers the effectiveness of the drug. Maybe I'll be able to contribute some information to the cause!

Snow here, with a true polar front anticipated tomorrow. We expect lows below zero early next week. Ah, winter (for my friends in Arizona and Florida: maybe the 30s and 40s don't sound too terrible now, do they?)