Seventy-five Bucks Worth of Butt-Ugly

I mentioned that I've (probably) developed pitting edema; we're still exploring what this all means. For the past 10 days or so I've been hobbling around on horrifically painful feet, with not a single pair of my own shoes or boots fitting over stiff, swollen feet that look like turtle flippers. I can't bend my feet enough to slide into a shoe. Add to that the problem of socks that bind, and one is guaranteed to face misery anytime one's feet hit the floor. So I'd solved the problem the same way that I did once before, by stealing a pair of Saint H's size 9 lace-ups. I'm glad to see that some innovations, such as so-called "diabetic socks" are showing up in quantities enough that one isn't forced to go to a specialty store to find them (and they really do seem to work).

I'd suggested that Saint H might want to invest in a pair of hard-soled slippers that I could borrow as needed. Off we went to our local discount shoe store; I found nothing of that nature that would fit me. When the clerk began asking him more questions, I told her it was my problem, not his; and she shifted gears without a hitch and brought several candidate shoes to me. Of one, she said, "It's ugly but it's comfortable."

That's how I managed to come out of the shoe store with a pair of velcroed walkers with absolutely no pressure points. They're black, they're men's size 8.5 EE, and I can't imagine actually wanting to own this pair of shoes. Once again, though, my comfort is more important than my vanity, and that $75 might just be the best money I've spent for a while! It's much more important to be mobile than fashionable!

All-Nighters

I've had lots of near-sleepless nights since the gamma knife procedure. That's due in part to the steroids, I know, but I've had a lot to think about since the middle of February.

When we left Cleveland Clinic on March 1, we had information on 4 drugs, a rough idea of schedule needs, and an assignment: choose the next drug I wanted to use by the end of the week. You may be wondering what goes into making such a decision, and I can tell you it's not easy. The four drugs we were looking at were: Votrient, Torisel, Avastin, and Afinitor. Here are some of the factors we considered:

Schedule - How quickly can one begin a new therapy? What might influence the schedule?

Risks - All of the drugs involve varying types of risk, though certainly better odds than doing nothing. Of the four, which posed the most immediate threat to me based on my individual response to the drugs I've taken so far?

Efficacy - What's the drug's mechanism of action and track record to date? Is it similar to drugs I've already taken, or is it something new that we'll have to monitor closely?

Side effects - Are the side effects controllable with other medications? Is there evidence of any new or particularly threatening side effect that I haven't encountered with other drugs?

Costs - What is the drug's cost? How much will insurance pay? How much will I pay out-of-pocket?

Other considerations - Are there some inherent constraints that will control access, schedule or other points on the list?

Taking these factors, we came up with the following concerns:
Schedule - In this case, Dr. G wanted me to start as soon as I could, possibly by March 8. The problem: steroids would preclude concurrent use of two of the four drugs, and my late-night driving adventure spelled the need for continued steroid use; therefore all four drugs return to the list of possibles. My start date: on or about my next appointment, April 2

Risks - Risk assessment is the hardest part of the equation and is closely tied to the drug's efficacy and side effects. Each person's reaction to a drug is very individualized. So, while I know that VEGF-inhibitors may increase one's risk for internal bleeding, not all VEGF-inhibitors cause me to bleed (so far only Sutent holds that distinction). Newly approved drugs try another approach, with a new drug pathway to try, the mTor inhibitor. My leaning is to exhaust all the drugs of a single class before trying something new; hence my inclination to go with Votrient first. But the most serious side effect of Votrient is the potential for liver failure, and given the liver damage I already have, this gives me pause.

Costs - I'm very lucky; these drugs are horrendously expensive and all require a "pharmacy override". That is, I must use my drug plan's special pharmacy service so that the cost benefits are spread over the entire pool, or else I must pay a good portion out-of-pocket. Heck, yes, I'll let them mail the drug to me and pay my normal co-pay.

Other considerations - Oral drugs can be mailed directly to me; drugs requiring an infusion (in this case, Torisel and Avastin) would be administratively harder to deal with. With infusions, the hospital or facility administering the drug probably would have to receive the drug. Would it go to their pharmacy, in which case would I have to pay more for it? It's not a scenario I'd like to test out just now.

So, my choice became "an oral VEGF-inhibitor", which leaves me with Votrient. As we don't have any idea how my body will react to a new drug, I'll be "baby-sat" off and on while I adjust to the medication and dosage level. I'll probably be traveling to Columbus during the day, sitting and knitting at C2's house. That way should I develop any problems I'm 10 minutes away from the OSU Medical Center, as opposed to being 20 minutes from the nearest hospital here and over an hour from the OSU Medical Center.

There you have it - a breakdown of what is, in essence, a life-and-death decision. It's not something to be taken lightly, but we can certainly weigh all the factors as part of the whole. Given enough information, I can analyze just about anything, I believe, and come up with a decision that I'm happy with.

I'm happy to say that my diaper rash has finally cleared up. Now I've got pitting edema in my lower legs. What I've read isn't encouraging but at least we're doing what we can to combat it. Will be interested to see what Dr. G wants to do when we go up on Friday.

Spring Forward

Nothing like having all the signs of spring cram themselves into a couple of days: We have lost nearly all the snow from the fencerows with temperatures in the high 60s for two days. Yesterday the spring peepers burst forth from the frozen mud in the pond, and a red-winged blackbird parked himself on the garden fence and started calling for a mate. Tonight we barely heard woodcocks "peenting" and tumbling over the pasture through the din of the frog chorus. Let's bring on the barn swallows! I'm ready for baseball!

We have "sprung forward" with a decision, so to speak. Saint H and I go to Cleveland on March 24th for a new baseline scan, and I will start on Votrient. This was not an easy decision by any means, and I'll be outlining all the factors we took into account for making the choice over the next few entries. In the meantime, I'm content that we've made the best choice we can, and am ready for the next step.

Brother P is visiting. I'm having a great time cooking for company - so far moussaka and chili have made the list, with corned beef and trimmings planned for Sunday. Steroid therapy ends on the 18th, and with it perhaps my appetite, but it sure has been fun while it lasted. Sister C, I promise to send him back before he explodes!

Cleanup On Aisle Two

I have always thought myself to be fairly modest and retiring. It runs in the family, but I do know that we've gotten a lot more vocal about our health since my diagnosis.

I hope nobody is offended by this post but it's something that I've had to deal with a lot since 2000. When one is dealing with chronic illness, there are often daily complications that may be - shall we say - indelicate? Following my liver resection, I wore an abscess drain for 8 months and had an open wound that took seven months of daily cleaning and bandaging by my dearest Saint H, sometimes as often as three times a day. While taking Sutent, I couldn't keep food down and often had to leave the table during dinner, leaving my friends to wait for me; waitresses and other restaurant diners probably thought I was drunk or something because I was in the bathroom vomiting so much. And I can't even imagine the number of medical folks whose eyes have travelled over all this battered scenery through the years.

After a while I got used to the idea that my modesty isn't as important as my comfort. Right now I'm dealing with thick and acrid bowel movements that have blistered the skin on my butt. I don't know whether it's to do with the steroids or whether it's a purge of the clinical trial drug (I do have nearly a year's worth of that in my system, after all), but I hope that this stops soon. I've been flagging poor Saint H a couple of times a day to check out how the blisters look. And, as I didn't have kids and didn't babysit, I didn't have a clue about what to do.

Fortunately friend/sister C2 is a successful aunt to multiple nieces and nephews, and her years of diapering experience gave me relief. Yep, I figure I've got a bad case of diaper rash, and Desitin is my friend.

The next time I hear some poor sodden child wailing in a public space before a diaper is changed, I won't stop my ears; I will feel and understand your pain.

Night Rider

Yesterday I finally got a long-overdue haircut in Columbus - 3 weeks past cut is a terrible time to endure with short hair. I had lunch with friends and sisters C2 and Monka, visited with them, and then went off to the Renal Cell Networking Group meeting. Saint H and I decided to dine afterwards (I am, after all, ravenous) before driving home, so we adjourned to a nearby restaurant.

My troubles began as I drove toward the restaurant. There's a not-so-well-marked left turn into the restaurant, and a not-so-obvious exit beyond the restaurant. I got into the left-turn lane and then realized that I couldn't see anything against the glare of oncoming lights. I thought I saw the left turn and there was a break in the oncoming stream of light, so I turned.

I'd missed the turn and instead bucked the poor Subaru up over the barrier for the exit, driving the wrong way over the curb. I managed to keep control of the car, and was able to maneuver around to park safely without scaring myself any further.

When I left for home I realized that my visual acuity was almost nil: I could tell that there was a difference between light and dark to my right, but I couldn't focus my right eye and I couldn't distinguish between lights, buildings, and signs. All were just simple blobs of light, and I couldn't tell what was moving and what wasn't. I had a hair-raising 40-mile drive home - thank goodness I'm familiar with the roads and could stay out of most people's way.

Given all the information from Dr. Sam C on the affected brain sectors, I suspected that there was swelling affecting the visual cortex. As instructed, I reported in today! I fired off an email to Dr. G and called Dr. LA's office as Dr. G is out of the office for a few days. Dr. LA's office increased the steroid dose for today and they'll give me further instructions tomorrow.

I may end up in Columbus tomorrow at one of the Cleveland Clinic remote facilities for a scan. In the meantime we had to shuttle a car to the mechanic tonight; short drive on home roads, and at least I could tell what was moving and what was stationary. I'm not planning to drive at night again anytime soon.

Roly-Poly Ravenous

Steroid therapy has been interesting to say the least. For the past two weeks I've been treated aggressively to bring down the edema and cranial swelling, with a planned titration through mid-April. So, I've bounded around the house with more energy than I've had for years. I've worked on lots of little projects that I've ignored for ages. I've stayed awake for hours.

I'm also eating everything in sight. For years I've been able to go out for dinner, eat enough to be satisfied and have another meal the next day from the leftovers. Not anymore! I'm eating everything on my plate and sometimes polishing things off from Saint H's plate as well. I can't go for more than a few hours without finding myself in the kitchen, putting something in my mouth. The "something" is generally good for me - cheese and crackers, fruit, nuts, the like - but oh, my goodness. How do parents of teenagers (not on steroids, hopefully!) manage to keep them fed? Today I had breakfast twice, two snacks, lunch, and dinner; and that's the way it's been for two weeks, for heaven's sake. My night-time reading has centered on cookbooks, just as was the case when I was on Sutent and couldn't eat at all. At least I can indulge, cook, and eat this time around.

This may be changing - Dr. G wants me to titrate off more quickly, so tomorrow we start stepping down doses drastically. If I begin having cognitive problems again we'll readjust the steroids for effective control.

Sometime this week I need to make a decision about where we go from here. I'll be weighing options and will report back what we do.