The Buzz

Several weeks ago my dear sister J and I made arrangements for her to come visit. Saint H and I were upstairs last weekend to tidy and start getting things ready for her upcoming arrival next week. He came into the guest room when I was stripping the bed and said, "The bathroom fan is plugged with a wasp nest."

Further investigation revealed that we were, in fact, dealing with yellow jackets rather than just any old type of wasp. As I told J earlier this evening, I can think of nothing guaranteed to freak both her and me out than yellow jackets. Anyone who has grown up in the country knows that nature's little friends aren't always so friendly.

We grew up in a 2-story, 100+ year old farmhouse that our great-grandfather had expanded to its final size. My bedroom was next to the attic (or, as our mother called it, the "box room"). There were yellow jackets living in the attic, and at night they would crawl out through the mortise lock in the door and fly around or gather on the floor to sting through my toes the next morning. To this day I wear shoes or slippers around the house and seldom go barefoot indoors. I never go without shoes outside.

My sister was bothered by bumblebees and other stinging insects; one stung into her ankle and Daddy had to use pliers to pull it off of her. She'd had unsettled thoughts since we talked about it and I told her about the infestation; I'd had recurrences of my childhood nightmares that involves armies of yellow jackets streaming through the walls of my bedroom.

This afternoon I tried calling one of the big national firms with local offices; I was put on hold immediately. While I sat waiting for someone to return to the phone, I kept looking in the phone book and finally decided to hang up and call someone truly local. So the call went to a small firm whose home offices are in the tiny town up the road from us. First, I left a message. Someone called me back within 10 minutes, saying that they couldn't get to us until tomorrow afternoon, to which I agreed; a few minutes later, the friendly voice on the other end called back saying "one of our guys is coming back from a job right now and he'd be glad to stop by your house tonight." So I said "yes" of course, and shortly thereafter Dan arrived with his full beekeeping kit and protective clothing. He was here for over an hour and cleaned up after himself beautifully; he admired Mr. Duke (always a good policy), and turned out to be a near neighbor of ours. So, the buzz is - always use the local guys! We'll certainly use them again.

Cretins and Salivations!

No idea where that line comes from but thought it appropriate for the day. We're in Cleveland resting up from all-day tests yesterday. I've hooked into the the hotel's network so I could update folks freely (and for free, hooray); will contact Geek Squad when we get home as I'm tired of being off-line.

I've spent time since the Friday before Labor Day getting the swelling down in my throat with steroids. As a consequence I've been off Afinitor since then; taking steroids in combination with these targeted therapies reduces the drug's effectiveness by something like 65%. At the price of Afinitor, I want a drug that works! I can swallow pills, food, and drink now, and am ready to go back on the drug therapy.

Yesterday's results were a complete success. No surprises on the labwork, all looked normal; the pelvic and abdominal scans were stable. The chest scans showed stability in the new lesions that had popped up in the last scan, even with just 4 weeks of treatment with Afinitor, and the big bad lesion in my right lung had reduced by 30-40% so it's less of an obstacle while we address the remaining disease progression. Top that off with Dr. LA's pronouncement of "beautiful" results from my MRI, indicating no activity in the brain lesions, and it was a great, great day.

I hope everyone else is dealing with the same level of success and good news - can't tell you how good it is to be alive and FEELING alive. My dearest Saint H has completed all the paperwork for retirement effective October 31 2010, after 24 years of service to the university. Then he's mine, mine, mine! I'm so excited I could burst!

How Things Are Going

I finished my course of 10 radiation treatments on July 20 and returned home on the 21st, completely exhausted and troubled with pain in my right shoulder. I spent much of my time the remainder of the week asleep, as the exhaustion was completely debilitating. I did have a birthday, I think, but I mostly slept through it. My friend Swanknitter had made arrangements to visit from the 25th, so I was happy to be awake when she arrived. I was still absolutely flattened by the pain, which seemed not to be responding to anything. I had been switched from Dilaudid to an Oxycontin/Oxycodone combination and I was feeling quite ill from the diminishing effects of the radiation, the new painkillers, and other accumulated problems. I was finally feeling better from the radiation by the 28th, to the extent of having an appetite and getting some energy back.

Dr. G had asked that I come back for new scans on the 30th so we'd have a new baseline set. Swanknitter and I finished up our visit on the 29th and she returned to DC to head home to Australia from there, and we headed up to Cleveland that afternoon. The scan results weren't great but they weren't hopeless either: I'd been off all forms of treatment since end of April, so no surprise to see progression in the lungs. Test results also showed that I had high blood calcium levels, and that was probably to blame for the complete exhaustion and slight confusion I'd felt after getting home. I was given a two-hour, two-liter infusion of saline, and an infusion of my old friend Zometa.

Dr. G also made arrangements for me to meet with Dr. R of the Pain Management Clinic. Her recommendation was to continue on a reduced dose of the Oxycodone, the dose of Oxycontin that I was already on, and to add to this a prescription for Neurontin. Dr. R's nurse Brenda said, "As it is, nobody knows how it works or what it does, but it works and that's all that most people ask."

I was able to fill my first month's prescription for Afinitor before we headed home, and Saint H handed in my Neurontin prescription to fill at my local pharmacy after we got home.

I sat down last night and wrote out my pill schedule since so many things have changed: we start at 7:00 a.m. and can run continuously through 24 hours every 2 hours, if I'm awake, though the blessed Brenda says "we don't set alarm clocks to take pills, for heaven's sake!" I like that thinking. Also, last night having been the first complete cycle including the Neurontin, I'm thrilled to report that I have very little pain in my shoulder for the first time since November of last year. It's great to be witness to one of those little mysteries of medicine; I don't have to know why Neurontin works, either; just the fact that it does makes me happy. I look forward to improved conditions in the coming days. Wah-hoo!

On Treatments and Loss

The schedule questions finally got resolved with a couple of phone calls on Tuesday, 7/6. Julie, the Social Worker in radiation oncology, called me mid-morning to say that Hope Lodge had a room for me starting Wednesday, 7/7, and had Dr. V's office called me? If not she would call them, verify the starting date, and call me back. As they hadn't called yet, that sounded the best option to me. She called me back about half an hour later with the news that I was to undergo my dry run on Wednesday, immediately followed by the first treatment, and that I was confirmed at Hope Lodge through 7/21.

I called Saint H and we hustled to make arrangements for furry childcare, and all the usual "leaving-town-for-3-days-with-less-than-24-hours'-notice" tasks... It's wonderful to have a known address for the duration, as we can leave things in place when we head back home on weekends to replenish clothing.

I haven't figured out whether I'm going to see near-immediate benefit, but I do know that my back pain has diminished somewhat. I'll take that, I think.

We received word that the second founding member of the Renal Cell Networking Group, John Gillivan, had passed away this morning. His brain mets came back and he lasted only a few days in ICU at the James. John and his caregiver, wife Susan, were instrumental in my being here still. When I first joined the group, I was trying to figure out what next course of action should be (remember this was in 2004). I had almost settled on starting with a clinical trial when they pointed out that one had to try and fail at high dose IL-2 in order to be eligible for most clinical trials. If one chose to start with some other therapy, one would be disqualified for most drug trials and other medications. Luckily I listened to them, suffered through high-dose IL-2, and then when that failed me I moved onto trials and other drugs; "the rest is history" as they say. I'd have missed buying the farm, building the house, refocusing my life on what's important. This process of postponing a bad outcome has taught me what's precious. I'd not have missed these lessons for the world.

Up In The Air

We're still up in the air about dates for the moment. We went up last Wednesday as planned for the simulation, and at the same time we hoped to get more details about schdule. Nothing, alas, seems to be so difficult as to get details at the moment - lots of things need to coalesce for all this to work out. I only hope that we find out more this Wednesday when we go in for the dry run.

I did break down and call the on-call oncologist at Cleveland Clinic yesterday afternoon; I'd been dealing with increasing amounts of pain, and the pain levels finally got beyond what I could tolerate. Turns out that I was, in fact, undermedicating myself - I wasn't taking enough of my pain killer, so I'm on a strict regimen to schedule the doses every 4 hours, 6 times a day. I think I can do it, as I've felt much better since starting this.

Today I went off to the county fair to pick up my entries. I received 3 first place rankings (the stole, the hat, and the baby sweater), plus 2 second place rankings (the socks and the vest). On the whole I was pleased, and the vest lost to friend M's Fair Isle vest ("Grant Street", Alice Starmore). It's a beautiful, beautiful pattern, breathtakingly well-executed, and she won Best of Class and Best of Show. Can't complain too much to finishing behind her!

Saint H and our friend R spent the day baling hay; I believe he said we have 120 400-lb. bales in the field, and we may get a few more scraped up from the remains. R has dairy cattle as does one of his friends, and they may be buying all this hay from us (woo-hoo!!) If we get a decent second cutting this year, we can put it up in square bales and keep it for our own animals. I wasn't sure we were going to accomplish a cutting at all; like so many others here, we've been afflicted by the weather; it's been too wet to get into the fields. Right now, even though it's above 90, it's not so terribly humid and it's not supposed to rain for at least a week. Great for hay, if nothing else.

Last Bit for the Fair

Years ago I swore I would never knit lace. Lace was "always" something oversize, like a bedspread, and it was always done in crochet thread on tiny steel needles, etc. Imagine my surprise when I saw a knitted linen facecloth, small and simple and lovely. I finally decided that there was nothing really keeping me from doing lace except misunderstandings on my part. I tried a couple of facecloths and scarves, and then itched to move on to something bigger. I was hooked, and have been ever since!

I chose this pattern, the "Field of Flowers" shawl by Evelyn Clark, and made it in Jaggerspun Zephyr. I worked on it very slowly (seems to be the story of my life) and came out with something I felt good about. Since then I've gotten slightly obsessive about buying laceweight yarn, but I work steadily toward finishing several small projects every year and at least one big one.

I had one other project that I wanted to put in; it's a sweater jacket worked in 2 strands of yarn, densely knitted in Manos del Uruguay and Classic Elite Applause, and colorful in shades of turquoise, blues and greens. All I have left to do is to sew the seams and block it. But last night I tried to work on finishing a seam, and discovered it's just too heavy for me to hold steady while I take the stitches, at least while my shoulder hurts. It will have to wait for a while, I'm afraid, until I find out what the radiation oncologist is willing to do.

We go this afternoon to Cleveland for tomorrow's appointment. I'll be glad to have the waiting over with.

Get Your Hat and Goat

I love to make hats. I've made hats for myself and actually kept them - most of my projects end up in other people's hands as gifts. This hat came from the fabulous book Sweaters, detailing modern takes on traditional Scandinavian colorwork. It's made in Dale of Norway Heilo; these colors represent rural Sweden to me.

My first attempt at 2-color knitting was a Dale of Norway hat from the Lillehammer collection, 1994; I did start it, at least, during the Olympics, though I didn't manage to finish it before the closing ceremonies. Saint H is the only person I know with a face long enough to wear the hat; and he's still stopped by strangers on the street who "just lo-o-ve" that hat. I have a hard time getting it off of him long enough to wash it in the wintertime.

Before that, I was content to stick to pretty pedestrian knitting, not very dramatic or complicated. I took a workshop with Alice Starmore in 1993 and progressed to gansey-style knitting, and this vest, "Oceans of Knits and Purls", (Knitter's, Fall 1997) was one of the most satisfying results of those forays. It has sterling "buffalo nickel" buttons and is a gift for my lovely nurse Vicki - purple is her favorite color as well as mine, and I can't think of anyone else I'd rather give it to. It will have to wait for after the County Fair, though.

I'm dealing with the usual joint pain, and the added fillip of shoulder pain is making life difficult. I'm more and more anxious for the meeting on Friday so I can find out what we'll be doing.

Knitting and the County Fair

Well, I'm taking the plunge and putting some of my knitting in at the county fair. I'll post photos of the projects over the next few days - don't want this to be too graphics-intense. Having spent years on dial-up connections, I always hated it when friends who lived in the "big city" sent me enormous files and videos, as I had no chance of downloading them before the connection got lost somehow. Maybe it's silly to cling to that, but I won't do it to anyone else, even though I have DSL now. Anyway, here are the first two projects:


This is the Whirligig Shrug, for my friend Steph's upcoming baby if a girl. Percival Bear, the Elegant Fella, is an excellent model even if he does nap rather indiscriminately. Steph has cut my hair for who knows how long, probably 13 years at least, and still looks as young as she did when we first started. I'll have another sweater for a boy baby ready before she produces in November!

These are the "Islamic Socks" from Nancy Bush's excellent Folk Socks - I had to buy the book because I loved this pattern so much. I've made it numerous times, and this was the first attempt, done in 5-ply gansey wool just as the book called for. Saint H had a pair and walked right through the heels, so I'm making him another pair, this time with reinforcing thread through the entire foot. He's very hard on socks.

We have appointments at Cleveland Clinic next week - Tuesday with an opthalmologist to have my vision checked, and Friday with a radiation oncologist who specializes in lungs. Dr. GV must have agreed to review my scans as the appointment is listed as "new patient consult"; I'm anxious to hear what he suggests. I'll just have to wait, though, like always - not always patiently, but I'm good at it.

Song Virus

My friend and sister C2, who sings in a folk trio, uses this term to describe the tune that implants itself into your head and your routine. Generally it's something obnoxious or inappropriate, and you just can't rid yourself of it until it's supplanted by something equally obnoxious or inappropriate ...

For the past several days I've been attacked by Disney's "It's a Small World", thanks to my friend A who sent me a jovial message on Monday. Over the weekend she visited with friends and family in her hometown and was chatting with her niece and nephew's maternal aunt. I don't know how the conversation turned to this, but the aunt is a nurse at Cleveland Clinic. It turns out she knows me and St. H rather well - she's none other than my sweet nurse Vicki whom we met on the last clinical trial. Yes, it is a small world. I just wish that song would go away!

Yesterday was scanning day at Cleveland Clinic, my first since starting Votrient in April. I'm officially off Votrient, as it did nothing to slow down my lung lesion and, indeed, I've developed seven tiny lesions in other areas of the lungs -- both lungs, unfortunately. Dr. G is working on options and schedules - looks like we'll check into radiation therapy on the right lung lesion, primarily palliative as I'm starting to have quite a bit of pain from it pressing against the shoulder blade but possibly as a debulking measure if they think it's possible. And sometime soon I'll be starting on Afinitor, the oral mTor-inhibitor. Nothing like pushing forward regardless ... I'll post more as soon as I know more.

Mr. Yuk Is My Friend

Well, it's been an interesting lapse. I developed a salivary gland infection at the end of April (my second in a month) but fortunately was able to get in for an appointment with one of the ENT guys quickly. I'm choking down 500 mg of a sulfa drug twice daily along with Compazine to alleviate the nausea.

At this point I have virtually no appetite; I haven't really been interested in food for about a week. I don't believe it's the Votrient; I'd much rather blame the sulfa drug in hopes that it will stop eventually! You may wonder, "Why sulfa?" Well, as time went on and I developed more and more serious infections from surgery and the like, I was being pumped full of antibiotics. Unfortunately I got hit with side effects pretty hard. I have a list of about 10 allergens now, but at the moment none are sulfa-based. So I guess that's my "drug class of choice" for the time being! And, much as I hate to admit it, it does seem to be working and I'd rather not be sporting an infection.

We've had killer weather too, alternating between hot and dry, and cold and windy and rainy. It's the type of system train that guarantees uncomfortable nights and difficulty breathing. I'm back to sitting up on the couch and snoozing, rather than trying to breathe all night lying on my back. I know it could be worse; we could be flooded. Saint H led a hike in Myers Woods last Saturday. It was damp and chilly but doable.

Saturday night we trekked to Columbus and huddled in a tent venue with 175 other people for the spotlight concert of the Columbus Folk Music Society's annual Central Ohio Folk Festival. My musical hero, James Keelaghan performed for all his chilly friends and warmed the evening greatly. Keelaghan is from Winnipeg, his voice is pure, his poetry unmatched; all in all his music has over the years given me great hope and solace.

We lost a good friend and member of the Renal Cell Networking Group; Gale was diagnosed in 1995 and was always quick to prefer surgery over drug therapy. She was a great-hearted lady; Saint H knew her from their shared times in the 1980s with the Ohio Wildlife Center, and she loved all animals, particularly dogs and horses. Gale and I shared the same birthday, too.

Our local friend who has battled brain tumors for 25 years is nearing her end; she's at home under hospice care. I'm nearly finished with a baby sweater for the granddaughter she'll never see. I always feel that I'm doing something worthwhile when I'm knitting for little ones.

When In Doubt, Ask

One of the things I enjoy most about working with Dr. G and Dr. LA is that both encourage me to call or email with questions. Their staff are all attuned to the needs of the patients (for good reason they all wear pins emblazoned with the Cleveland Clinic square symbol and the slogan "Patients First"). I've never had a question or comment dismissed as silly, or irrelevant, or unimportant, and I've never had a call or email go without answer for more than a few hours.

Once we got home from Cleveland on Wednesday, I felt exhausted and was ready to go to bed. I spent most of Thursday in bed, with all muscles and joints aching incessantly, no appetite, and no relief in sight from Dilaudid. I felt somewhat better on Friday, but decided to call Nurse Shari. I left a message: had she any reports of similar reactions on Votrient or any other drug that I am taking, or any idea what this might be? About 3 hours later, she called me back: "I would say that any reactions to Votrient would have occurred much more quickly after you started using it, and your results Wednesday were so good that I can't attribute it to anything else. I have heard of a bug going around that starts with a headache and progresses to muscle and joint pain; the muscle and joint pain is persistent and constant. The good news is that it seems to pass off in a couple of days generally. I think that might be your problem." We both decided that this pattern fit with how I felt, and that if I didn't feel better after the weekend, I should call again.

Today was much better; I feel almost back to normal. I'm so grateful to have such responsive medical staff on my case. They are quick to respond, they're reassuring, they are always happy to answer my questions, and they all work together to include me in my medical treatment. All I have to do is ask.

Normalcy?

Well, I'm back in my own shoes, wearing regular socks, and requiring nothing more drastic than an occasional slathering of lotion to keep the skin on my legs and feet supple. The edema finally responded to slow, steady use of a diuretic, and I'm pleased to put my ugly shoes away for the next time. It's such a relief to abandon yet more medicine, and to see results that require only patience and time.

Actually, I so seldom "see" results that I hardly know what to think. We in the Renal Cell group always kid one another: If you've got side effects, your meds must be working, unless the side effects get out of control to the extent that one must stop taking the medication! But side effects are generally the only outward sign of a medication's "presence" in the body. I have to rely on scans and test results to know how things are going, and even then I'm at the mercy of someone else's interpretation of those results - I can't make any judgement for myself by looking at the test results, or viewing the scans. Fortunately we have tools at our disposal.

I mentioned long ago a great resource, Netwellness, which is a service of 3 major universities in Ohio for composite medical information that's unbiased and definitive. One of the most useful components of that service is the Medline Plus Medical Encyclopedia, where one can look up test names to see what the test is measuring, what's "normal" and what the test results indicate. All of the Medline Plus content is available without charge to anyone with an internet connection; there are lots of ways to get to the Medline Plus site but I like to recommend Netwellness because of the other resources available there.

Saint H got a nasty surprise yesterday. After suffering all weekend with a mild toothache that gradually worsened, he ended up in the dentist's office yesterday afternoon, getting a crown. Further, he's scheduled for another appointment tomorrow morning for a crown on the tooth next to the one treated yesterday. Ah, the wonder of growing older - I know it's worth keeping one's own teeth as long as possible, but egads it can be costly! Guess we'll cross that bridge when we come to it.

First Day

We went to Cleveland for appointments on Friday - benchmark scans and a general check on my health and well-being. And, because I was still dealing with edema in my lower legs and feet, I had ultrasound exams on both legs. Our results were good: scans were stable and lab results were generally in good shape, though my hemoglobin levels are down to 8.7 from 11.4 at the last set of labs. The ultrasounds were added to the mix late in the day, so we didn't have final results when we left. By the end of the day I had my first 30-day supply of Votrient with instructions to begin on Monday if all the test results were good.

I spent much of the weekend stewing about the possibilities: side effects, my body's weaknesses and strengths, warning signs, and the like. Even though I had come to a decision, that decision once made must still be lived with. Without data to fold into the equation, one's mind becomes the hamster, endlessly chasing the "what if"s through the night on the treadmill of the unknown.

I did query my friend Bruce who started on Votrient about 3 weeks ago; we've gone through Sutent and Nexavar together, with some of the same reactions to the same drugs. I was reassured to hear from him that it's gone well; I can't tell you how much that calmed my fears.

Monday I saw my primary care physician Dr. MC to reassess my current maintenance meds; we changed out one blood pressure med for another, and reconfirmed my use of a diuretic to continue fighting the edema. Then I called Dr. G's office; Nurse Shari and I traded phone calls for a while until we finally talked together in late afternoon. The ultrasounds showed no blood clots so I was given the go-ahead to start on Votrient today.

I took a full dose, 800 mg, at 10:30 this morning. The day passed relatively normally (a meeting, lunch, and a lecture tonight) and I'm feeling relieved. So far so good; no immediate negative response, no big red flags. I'll be watching things closely, monitoring my blood pressure and looking for signs of trouble. Keeping fingers crossed - would love to have a med without side effects! What a concept!

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!

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.

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.

Thank goodness that's over

January, that is; such a dreary, fractious, whining month this year! It was 31 days of mostly unremitting grey skies, mostly disgusting weather, mostly unpleasant news - all together a forgettable period. Within a 10-day period friend and sister C2 had a heart attack (she's recovering nicely), friend A's mother died unexpectedly, and a former coworker was diagnosed with stage 4 lung cancer. The whole miserable month ended on Sunday, appropriately enough, with a major car problem as we were getting ready to head to Cleveland - but at least it didn't happen while we were on the road, and my beloved Outback was quickly repaired and ready to go again. February is bound to be better.

I'll be heading into town shortly to pick up kitty and people meds, kitty and people food, and a few other things in preparation for the winter storm that's heading our way. I'm not panicked and the larder isn't bare, but there's no reason not to have stuff on hand. Saint H is due to lead a winter tree identification hike on Saturday for the local park district, but we'll have to see if the weather cooperates. Hmmm, seems to me we did this last year too and squeaked the hike in before things got ridiculous. Maybe our luck will hold, or maybe we should think about a different scheduling pattern? Who knows.

I'm compiling all our tax paperwork for the accountant. Last year we put over 10,000 miles on the car for medical mileage, and the stack of medical receipts this year is about 8" high. Egads!

Well, They Did Ask Me

"So, what do you think about this deputy sheriff thing?"

Over the past couple of weeks any number of my friends, acquaintances and former co-workers have asked me this question. News broke of a former county deputy sheriff, a suicide last month, who had in fact scammed friends, relatives and co-workers with a cancer hoax. The local police organizations had raised $20,000 for his "medical bills"; co-workers had driven him to appointments and picked him up after his "treatments"; they had donated sick leave when his own ran out in the course of his multi-year battle with 3 supposed bouts with lung, brain and testicular cancer.

Outward appearances were faked with weight loss, careful depiliation and selective use of tanning beds to simulate radiation burns. Autopsy results? No active cancer, no evidence of cancer, no evidence of surgeries, no nothing. Family devastated. Friends and co-workers embarrassed and angry. Local residents indignant. Those who don't like him are pointing the finger at the sheriff for lax supervision.

So, here are my thoughts: I do find it hard to believe that the family could have been unaware of this, as claimed, but I wasn't there and I don't have any idea how open the husband and wife were about health. Some people don't WANT to share all the gory details with their nearest and dearest, and some nearest and dearest don't WANT to know. You can't force involvement with someone who doesn't want to share, on either side.

I think co-workers can easily be left in the dark. Health is so very private; most patients provide the minimum of detail. If one looks the part, as this fellow did, people will accept what they're told, commiserate, and be thankful that they're not in the same boat. It would be easy to fool people and, unfortunately, it happens all too often.

I think people generally misunderstand HIPAA. Yes, one's employer can ask for information from one for administrative purposes. But the employer cannot directly query the provider unless one gives written permission. If the employee provides forged documentation, as in this case, and does NOT give written permission for the employer to consult the records directly, as in this case, the employer has no way of verifying what has been said. It didn't matter that the sheriff had his doubts; he was in no legal position to demand the information, and that in no way reflects upon his supervision.

Finally, I think that this is a perfect example of why health care needs to be reformed. We are easily taken in by hoaxes and scammers because it's easy to believe that an individual can be faced with insurmountable medical bills under the present system. As I told one indignant friend, "Saint H and I are one life-flight and a few unexpected expenses away from bankruptcy ourselves, and I have good insurance and some money in the bank."

Those who complain about the people "who get everything paid for": All I can say in response is, Few people want to be uninsured, and nobody asks to be sick. Doctors are obligated to provide treatment by the terms of their training and licenses. What would you do, ask the under- and uninsured to just go die quietly because they somehow don't deserve proper care?

If I make a few friends, acquaintances and former co-workers angry because I tell them what I really think ... well, they did ask me. Sorry if my opinion doesn't match theirs, but those who know me well shouldn't be surprised by this.

TMI?

Some of my friends have sent emails, concerned that I haven't been posting as frequently to my blog as in the past. Part of that's covered by my schedule: I'm asleep or otherwise out of commission for a couple of days for every treatment, and for the next few weeks I'm taking a couple of classes through a local Elderhostel program. Once I'm out of classes in mid-November I'll be back to my usual schedule.

The other part is a little harder to quantify: I'm bound by a verbal agreement with the drug company conducting the clinical trial to be discreet in discussing my participation, and I'm not to make any claims that I think I'm being cured or other unscientific deductions about my case. So that leaves me with observations on how I feel, what reactions I've had, anything that's verifiable. I think it's safe for me to say that I can report documented results and equivalences from one evaluation to another. I do wonder what constitutes "too much information" for the drug company.

I will figure out how to request clarification on this. I don't want to jeopardize their trial, nor do I want to jeopardize my participation in it as I think it's important to give back to the kidney cancer community. I suppose at some point there will be FDA guidelines about blogging for clinical trials!

A Tale of Two Kitties

Life is returning to normal here, following emergency surgery for Marmaduke last Saturday. Duke, for those who don't know, can be summarized as a smart, cute, part Maine coon who lost an eye at six months to an infection and then moved in with us. He's a charming cat who thinks he's a dog, mostly; and last week when his empty eye socket swelled alarmingly we headed for emergency vet services at Animal Care Unlimited in Columbus. We've known Dr. Don Burton for years so it was an obvious solution to the holiday closing of our own vet's office. We left him in good hands for his surgery and went home to await the results.

We stopped for brunch in town and were heading back home in mid-Saturday traffic. We were slowing down for a stoplight when the passenger's window of a pickup truck right in front of us opened. An arm shot out, and a black-and-white kitten was thrown onto the pavement beside the truck.

We followed the truck as it turned to enter a local shopping center; the car beside us stopped and the driver hopped out to pick up the kitten. I dialed 9-1-1 and apologized but reported my emergency, including the idiot's license number, and left my contact information with the officer. We backtracked to make certain there was no carnage on the highway, then went home.

I was so angry I thought I would throw up. Why do people treat cats so terribly? I have always loved and found comfort in cats; in many ways they're my children. I contribute to some very good charitable organizations for humans, regardless, but I spoil my kids, darnit.

I haven't watched the papers to see whether an arrest was made, and I haven't been contacted. But I hope the 3 idiots in the truck were stunned that anyone would care about some poor little bundle, enough to try to get them punished for their actions.

In the meantime Duke's had his drainage tube from surgery removed, he's still playing it for a little sympathy, but he's over the worst of it. I trust he knows he's loved.