Renal Cell Live!

Wednesday, May 30, 2007

End of The Idyll

Tomorrow I go back on Nexavar, at a quarter dose. As my friend Swanknitter commented in an email, "I am so sorry to hear about your hands and feet. I can't imagine how horrible this must be especially when the culprit drug is otherwise working on the tumors." It's an uncomfortable balance - I've enjoyed being off the meds and have especially enjoyed being able to walk about again, but I'm terrified silly of what advances the mad tumor cells might be making in absence of the meds. It's worse that we just don't have enough data to know whether a hiatus from the drug is good or bad in the long run. What risks am I taking here?

Another interesting sidelight of my Nexavar vacation: I'm still taking my blood pressure meds, of course, along with all my other meds. Right now I'm dealing with low blood pressure rather than controlling high blood pressure, since it's not being artificially elevated by Nexavar. I don't feel fatigued, I feel lethargic!

An email to Dr G confirmed hand/foot's progression, which I've not seen described elsewhere: First, I develop what I would call a "wet blister", where the skin puffs and there appears to be a liquid fill underneath. Then, the wet blister hardens and thickens into a callous. Then the soft skin ruptures at the edge of the callous, followed by an ooze of thick yellowish material. Finally, the callous softens and sloughs off. Definitely not pretty but at least I know the process is normal now. And, oddly enough, my thumbs have never "progressed" beyond the callous stage.

Is it painful? Yes and no - sometimes it just feels weird, like the nerves under the callous are tingling and pushing against the callous from the inside out. Other times it's quite painful, with an almost burning intensity. When the skin is getting ready to rupture it itches like the devil. Go figure.


Wednesday, May 23, 2007

Dem Bones

I kid my friends now that, when we're out and about, they have to make sure to wait for the old woman who has taken over my body. It hasn't always been this way; I used to walk very quickly and could outpace most of my acquaintances.

Now, with hand/foot syndrome and its attendant ugliness, I limp along, favoring my left foot. Because I'm favoring my left foot, the back of my left calf cramps, as does the side of my foot. Then my right knee starts to protest. Then my hips start to hurt. Finally my lower back starts to throb.

I have arthritis in my right knee and my right ankle (from a fractured kneecap and broken ankle) and bursitis in both big toes. I've had these problems since the mid-80s, as my klutzy college past caught up with me. Add these ailments to the joint pain associated with Nexavar, and the "owies" from walking gingerly, and I see the sense of the old spiritual. The skeleton is interconnected - and right now it all hurts!

Monday's scan results at Cleveland Clinic: I'm still stable. My left big toe has lately been wreathed in a most off-putting combination of blisters and callouses, and both thumbs have been stiff and blistered to the extent that I've stayed offline for much of the last 10 days. As a result, with Dr G's blessing, I'm off Nexavar for the next week or ten days to try to get the hand/foot problems under control. Then we may drop back to a quarter dose for a while to see how I do.

I've been spending my time with shoes off, feet up, reading and knitting with the occasional spate of laundry and cooking intervening. Today I put shoes on for a trip to the grocery store - a "big step forward"; being off Nexavar has lessened the hand/foot but I'm still happy to run about in stocking feet until it's cleared up.

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Wednesday, May 09, 2007


white false indigo (courtesy US Fish & Wildlife)
Yesterday I had the great privilege of meeting, hearing, and lunching with Ohio author and naturalist Perry Peskin. He's spent a lifetime exploring for rare and endangered plants. His book, The Search for Lost Habitats, details those explorations in delicious prose and stunning photographs. He's as delightful in person as he is in his writings. He told of his first visit to our Claridon Railroad Prairie, where he first saw white false indigo.

Last evening after supper Saint H made more nest boxes for our growing tree swallow and bluebird population. The two he built and erected on Sunday are already occupied; time for another trip into town for more mounting posts. We have plenty of suitable sites - the land was originally prairie and parts are undeniably wet. The farm has been out of row crop production for seven years now, and we've put in pasture and a small pond on about 12 acres. We mow a patch of "real" grass around the house with an electric mower, and plan to convert the rest of the "lawn" to more pasture; the remaining acreage will probably go into wet-tolerant pasture and prairie.

Frogs and toads are multiplying in the pond. We have a bee tree, and may put out hives as the plants diversify. The bluebirds and swallows use the house and fencing as hunting perches. Maybe they don't mind that we're here; maybe they don't notice us much. I feel that we've landed in our own little ecosystem and we should do our best to fit into it with little disruption. We haven't the time, money or inclination to try to force it to produce cash crops; better to adapt our expectations to what it will support. Our reward will be food for our animals, with the bonus of living with nature literally at our doorstep.

What we don't want are invasive species; English sparrows are showing up now because we've made this a good environment for them, too. Garlic mustard is spreading in the woods. Saint H routinely empties the sparrows' nests and tries to trap them out of the nest boxes, and we will have to start ripping out the garlic mustard stands as best we can. Oh, we'll never be rid of either pest, but we can try to keep them at bay while nurturing other species that we do want.

Perhaps my body is a habitat too - and renal cell is the English sparrow or the garlic mustard. I know I'll never be rid of it, but there's no reason to let it take over without a fight.


Monday, May 07, 2007

Lucky Me

Koppel on Discovery: "Living with Cancer" aired last night. I didn't quite make it through all 3 hours, but it was engrossing, touching, and stimulating. One part of the discussion struck me in particular: What do we want from our doctors? And I've been trying to define that for myself for some time. So, what do I want from my doctors?

I want Truth.
I want Optimism.
I want Hope.
I want Compassion.
I want Humor.
I want Honesty.
I want Ingtegrity.
I want Humanity.

Of all these, I suppose "Hope" is the hardest to define. Hope cannot be blind; hope cannot be false. Hope must be tempered with Realism, steeped in Fact, drawn by Opportunity paired with Luck.

I have never been led to false hope by my oncologists; in all cases, I think they have welcomed a patient willing to explore and learn and grapple with the complexities of modern medicine. My desire to know what I'm dealing with has given them rein to share their knowledge and their expectations honestly.

I feel privileged to work with my primary care physician. His sister's husband has renal cell carcinoma, and so I suspect his interest in my case carries more personal connotations. But beyond that he has never brushed off questions; he has never taken anything for granted; he has always been ready to discuss my options, and has always accepted me - and my oncologists - as partners in my care.

I feel privileged to work with my oncologists. They have never treated me as a statistic or a "case study" (even when I've been involved in clinical trials). They see me as a person and not a disease.

So, what *do* I want from my doctors? I think I want exactly what I'm getting.

I feel so fortunate. I know that my symptoms/side effects are minor and controllable. I know that I have relatively little active disease. I know that I have access to some of the finest medical facilities in the country - perhaps the world. I know that I have the best chance of survival possible.

As was discussed last night - so many of us are lucky: we have access to good medical care; we have good doctors; we have the most advanced medicines available. Add to that my friends, family and above all my dearest love, and I count myself the luckiest person on the face of the earth.

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Sunday, May 06, 2007

As If There Were Any Question ...

Yesterday I resumed taking my Nexavar, after my week's "vacation". If I still questioned the link between the medication and my side effects, I think I can safely say that I've got my answer now!

I always take my dose in the afternoon, generally around 4:00 p.m. Within an hour, the burning discomfort in my right heel returned. Within an hour, some numbness returned to my tongue. Within four hours, joints in my right hand started to ache. Last night, insomnia ruled supreme. This morning, diarrhea arrived after breakfast. So, I guess things are back to "normal". But the week off gives me welcome relief, and the symptoms are always lessened when they return. It could be a lot worse.

Saint H spent this lovely spring afternoon doing maintenance on his bluebird trail at Alum Creek State Park. He found bluebirds, tree swallows, and chickadees nesting on the trail, and the 8 gourds on the purple martin rack all contain martin nest starts for the first time since the colony formed 6 years ago.

As of last week my barn swallows are swooping over the pasture again - let's hope they find the nesting brackets we've put up for them!

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Saturday, May 05, 2007


Hmmm. I know, I've been missing-in-action again. My health remains good, though insomnia has returned with a vengeance.

My hand/foot adventures continue, and I'm ashamed to admit that I'm squarely to blame for the huge blister on my right heel. I wore the wrong socks one day, could feel the irritation starting, and didn't take steps right away to correct it. So now I think I may be faced with another life-long flashpoint, and it's my own fault. I guess I have "matching feet" now, with a distressingly bad spot on each. You may ask "what's the 'right sock'?" - my answer, anything that has a padded foot. ThorLo socks are pretty wonderful and come in a variety of padding styles, so I should be able to cover all situations. I've completed my week-long cessation of Nexavar, and most of the problems have cleared up - nice to know that the pattern and results are predictable. (And it was a great excuse to buy a new pair of clogs!)

I've been keeping busy with a local Elderhostel network program, taking classes and volunteering on the steering committee. It's fun, not too demanding, and stretches my mind a bit more than the usual routine of knitting/laundry/cooking/cleaning/pilltaking/doctors' visits. And beyond that, I'm teaching some of my former co-workers to knit socks, and have written a couple of "new" sock patterns myself in the last couple of weeks. I don't claim that they are startlingly original, but I think they'll be easy enough for novices to work and learn a few new tricks. When my hands bother me, I switch to a sweater in progress for friend and sister C2 - I only promised it 10 or 12 years ago, and it took that long to find a pattern we liked!

I am, reluctantly, preparing to return a book borrowed in Saint H's name from OSU Libraries. Bombers and Mash: the domestic front 1939-1945 by Raynes Minns is a fascinating summary of "women's war" in Great Britain during World War II. I'd no idea that rationing continued in Great Britain until at least 1950; and oh, the things that people could do without! No soap - no sugar - no paper - no fuel - no meat; the list goes on and on. The book is liberally illustrated with contemporary advertisements, with infuriatingly cheerful "make-do, brave little woman" messages, and there's a fascinating section of recipes. I don't plan to serve baked pickled pig's cheek anytime soon, but the recipe is there if I need it ...

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