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.