Renal Cell Live!

New Next Steps

2010-09-13T23:46:00.002-04:00

We spent a long, enjoyable weekend running around doing things without specific deadlines and without specific agendas; more than anything else, we were reliving some of the the "good old days" when we found time to run away more than a couple of times a year. Right now, I feel well enough that I hope we can continue to do this more often; we had a blast. First, on Saturday, we visited the Wyandot County Humane Society in Upper Sandusky, OH, a no-kill shelter that generally has as many as 30 equine rescue animals available for adoption. We've decided that Jeb's companion will need to come from there; it's a private shelter operating on grants and donations, and we admire their perseverance in hard times and good times.

Saturday afternoon we visited my friend S in Findlay and puttered around her yarn shop until she closed, when we all headed off to a local apple orchard to see what was available. We were able to get fresh-picked Cortlands and Galas; fall orchard tours and visits are a delight always, and we love to find new ones to explore. We've decided that after retirement we'll just throw the occasional picnic into the car and take off for a quick daytrip whenever we wish - nobody to answer to regarding time; no questions asked, just go.

Sunday we picked up some small pieces of furniture from my friend/sister C2; she's moving and we decided to buy some pieces so she wouldn't have to work around them. We raced home, picked up the car, and headed to Delaware, OH for the All-Horse Parade, part of the Delaware County Fair activities, courtesy our friends J and E who provided brats and trimmings and seats along the parade route for some 30 or so people. It was a blast, even if we didn't get home until 7:00 p.m. I felt tired but at least survived the whole weekend without major relapse.

I'm off the steroids now and the throat swelling and other problems have been alleviated, and I restarted Afinitor tonight. My doctors are watching enzyme levels and other cues like hawks; I'll be starting monthly Zometa injections again soon as the blood calcium level is one of the most critical indicators of overall stamina and health at this point.

Oh well, best just to wait and see what happens. I am grateful for the lovely weekend we spent together, and we are anxiously counting down the days until retirement on October 29. I am ready to have Saint H home, rested and working on projects that he wants to pursue. I'm sure a lovely time will be had by all.

The Buzz

2010-09-11T01:04:00.003-04:00

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!

2010-09-09T08:50:00.002-04:00

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

2010-08-01T17:03:00.003-04:00

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

2010-07-10T13:32:00.007-04:00

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

2010-07-05T17:31:00.005-04:00

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.

Next Step (Date Unknown)

2010-06-26T00:37:00.003-04:00

Today Saint H and I met with Dr. V of the radiation oncology team at Cleveland Clinic. He reviewed my scans and my medical history and has agreed to take me on as a patient, whoopee! He felt that I'm in good physical condition and "blooming" health, except for that little cancer problem, and that I'm a very good candidate for this treatment.

We're waiting into early next week to find out what kind of schedule we're looking at, but he wants to begin sometime next week. As he described the procedure, it's something like what was done for gamma knife, but we're looking for "gentle destruction" (his term) because lung tissue is so much more delicate than brain tissue. There are the usual times set up for mapping the lesion, and plotting the radiation plan, then I'll be scheduled for 10 sessions of radiation, 15 minutes each. In fact, I'll be getting radiation for as long as the gamma knife procedure took, just cautiously administered over 10 business days! There will be somewhat less concern over the precision aiming, though we'll be locking onto the target with what are known as "tattoos" resembling small dark moles on my chest. I suggested to him the concept of registration marks for printers, and he agreed with that. Potential side effects? I may develop some "sunburn" or darkening of the skin surface, and I may develop pneumonitis, irritation of the lung tissue resulting in coughing and shortness of breath. I don't cough now, and have only had shortness of breath when I exert myself on very, very warm, humid days, so perhaps it will take longer to see that develop. And, because the esophagus is so close to the radiation site for me, I may have some inflammation of the esophagus before this is over. Fortunately these are all controllable. This goes beyond palliative treatment; he expects to see the lesion completely destroyed, which will leave it to me and Dr. G to focus on treating the remaining lung lesions.

For the moment we don't know the schedule, because Dr. V has to coordinate several schedules - his own and the oncology team's, Dr. G's, and that of the American Cancer Society's Hope Lodge, Cleveland. Hope Lodge provides housing at no charge for cancer patients and their families when on extended stays in a distant city for treatment; with a 2-1/2 hour drive one way from home to Cleveland Clinic, I certainly qualify for the service. As you can see in this virtual tour, the facility is lovely.

The "no charge" option is becoming vital, though I can for the moment afford the Cleveland Clinic rate at the Doubletree Downtown, Lakeside ($89.00/night for rooms that normally rent for as much as $299.00/night). However, doing restaurant meals on top of about $1000 in hotel costs is getting outside my comfort zone financially. If I can take advantage of the Hope Lodge program and test out the lovely kitchens, I'll be pretty happy. We picked up a flyer on the surrounding area; lots to do to keep myself busy outside of my "15-minute day". Friend M can pursue some grant research that she needs to do, friend B has offered to be my keeper too, so Saint H won't have to be there the whole time.

The sooner I know the schedule and how it affects when I can start on Afinitor (and from that, what my schedule will be with Dr. G), the better I'll feel. Guess I'll start packing books and knitting now so I can be ready to go at a moment's notice. Some things are much more important than clothes ...

Last Bit for the Fair

2010-06-24T09:44:00.005-04:00

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

2010-06-20T20:55:00.004-04:00

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

2010-06-19T21:10:00.006-04:00

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

2010-06-17T13:23:00.002-04:00

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.

Keen-Eyed Man

2010-05-28T16:26:00.004-04:00

I'm such a good, compliant patient! Much against my inclination I decided to go back on the full dose of Votrient after my stomach had stopped rebelling. I really wanted to cut back the dosage, but Dr. G overruled me. After I got over sniping about "Dr. God" I finally figured out that he was simply trying to remove the reaction to the sulfa drug from the equation, and his wishes actually made more sense than mine. And I'm happy to report that over a week has passed on the full dose and I have had no apparent side effects. If things go well I'll stay on it at least until the first set of scans next month. If, however, I develop the side effects again I'm sure he'll have no objection to cutting the dosage back somewhat.

I had some trouble sleeping earlier this week. One night I stayed awake until 5:00 a.m.; before I went off to bed I managed to drop my laptop edge-wise on my left big toe, leaving a big gash and a fabulous bruise. That was partway healed when, another morning, I had gotten up and settled on the couch to work on some documents. I stood up, my right foot buckled under me, and I fell, twisting my ankle. Thank goodness (in some ways) that I've much experience with that ankle - I've probably sprained it six times since I entered college, twice really badly, and I've broken it. I could tell that it wasn't broken, and I had all the goods to alleviate my situation - I just wrapped it and elevated it, put cold compresses on it, and clumped around in my airboot (from the break in 2001). It's still sore after 5 days but I can walk almost normally. I suspect that my balance has suffered over the years, or else I've become sensitive about falling after repeated episodes; I find that I'm just not as steady on my feet as I used to be. I guess I can live with it as long as the damage isn't too severe.

Last week my brother P got a big surprise - he found a downed weather balloon in a field across from the house. He called the number listed and received a visit from some very excited University of Illinois students who came to retrieve it. You may enjoy the pictures taken by the balloon's camera on its short flight. The boys refer to the "keen-eyed man in IN" who found the balloon. I think it's more the case that P, like Saint H, is so familiar with his environment that he notices things; he doesn't necessarily have to "see" things to register a difference in his mind. Since he refused a reward the boys brought him a "Chief Illini" statue as a thank-you; I'll look forward to seeing it when we go visit next month.

Actually, Mr. Yuk Is My Enemy

2010-05-17T13:08:00.006-04:00

I sent a message to Dr. G and Nurse Shari last night. I'd spent that truly miserable week with nausea and vomiting, though never so bad as when I was on Sutent, and had to finally give up on the sulfa drug rather than spend all my time in bed or the bathroom. Some of the nausea and stomach upset persisted until early Sunday morning, by which time I felt so rotten that I curled up in bed and stayed there quite late. When I got up I was still so woozy that I just couldn't face eating or taking my dose of Votrient, so I didn't take it.

Surprisingly, within a couple of hours my stomach had calmed, and the weird swallowing problem I've had for over a month had gone away. My appetite returned, and I was feeling pretty fabulous for the first time in a long time. It's funny how it's borne in on one, by the absence of symptoms, how quickly one can feel better - the misery becomes a distant memory in no time.

So, I thought I needed some advice from my medical professionals - should we consider lowering the Votrient dose? How much of this could be blamed on the nasty sulfa drug? Was it possible for symptoms to disappear so quickly, or was I just so relieved to feel better that I was hallucinating? Would they condone lowering the dose or would they want me to stick it out until my first scan in June?

I called Nurse Shari in midmorning as I'd not heard from her. Turns out Dr. G isn't due in until later today, but she was able to give me the following tidbits:
- The nausea and vomiting was almost without doubt due to the sulfa drug, as it's notorious for causing severe stomach distress. I should add it to my no-no list and forbid any doctor from giving it to me again (my inclination exactly, and thank goodness there was no hesitation on that decision)
- The remaining symptoms are probably due to the Votrient and she suspects we will reduce the dosage level. All I have to do is wait for Dr. G to arrive and have time to decide course of action with her, and they'll relay to me.

I really enjoy participating to this level in my own care - perhaps it's perverse in some people's view, but good heavens! I feel like I have some control over what's happening. Why persist in misery just because "that's what I was told to do"? That may have been the traditional approach to medical treatment ("Sit quietly and take the nice medicine, that's a good girl!") but I certainly have no use for it.

I am thrilled to report that, after several years, barn swallows have located one of the brackets Saint H placed on the internal fascia of the front porch. They are placing a careful array of mud pellets for a nest, right in view of the living room window. Cola is absolutely fascinated. Our house is becoming a handy roosting spot for the barn swallows; this morning I was serenaded by a throng of them waking up from roosting on the roof. A raucus symphony, indeed, but one of the most welcome sounds I can think of.

Mr. Yuk Is My Friend

2010-05-12T19:30:00.004-04:00

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

2010-04-24T23:06:00.003-04:00

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.

Nothing In My Brain

2010-04-22T22:26:00.002-04:00

"I want to show you some beautiful pictures." Those were the first words we heard from Dr. LA in Cleveland yesterday; she suited actions to words and pulled up before-and-after MRI shots from the gamma knife procedure.

As of yesterday's MRI results, there is no swelling remaining in the brain, and all of the targeted lesions were eradicated. There are no new growths present. The procedure was completely successful. It was fascinating to see the images side-by-side. The largest lesion left a hole, literally, in my brain. Thank goodness we have more brain matter than we need ... Dr. LA is thrilled with the results, as are we.

We met also with nurse Shari, who reviewed my labs. Nothing abnormal showed up; my hemoglobin counts continue to hover just below normal, and we'll continue to monitor that as well as some of the other "normally abnormal" counts that I've accumulated over the years. We'll also continue to monitor my liver activity, as anecdotal reports have several Votrient users suddenly developing liver dysfunction. I'll be seeing Dr. LA every three months, and probably will see Dr. G about every 8 weeks, so we'll still be burning up the roads between here and Cleveland for the foreseeable future.

On the homefront: last night Cola suddenly howled, sprang into the air, and raced around the living room, disappearing down the basement steps before I could stop her. She stayed huddled in the basement all night and most of the day today. This was a mystery until I found the yellow jacket in my bathroom. My guess is that she (the Mighty Huntress) found the dratted thing, attacked it as she would any other insect, and was stung. I swatted it with a towel 3 times (each time it started stinging the towel), and finally crushed it with a bottle. I remember stepping on one of those as a kid; it took pliers to pry it away from my toe after I was stung. Poor little kitty!!

Normalcy?

2010-04-14T15:27:00.001-04:00

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

2010-04-06T22:06:00.003-04:00

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

2010-03-30T22:44:00.003-04:00

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

2010-03-28T23:12:00.003-04:00

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

2010-03-12T22:48:00.004-05:00

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

2010-03-07T15:39:00.003-05:00

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

2010-03-04T21:46:00.004-05:00

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

2010-03-01T21:23:00.004-05:00

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.

So, What Exactly Went On?

2010-02-26T16:08:00.003-05:00

This is hard to get a handle on because we all want to put things in familiar context. As Dr. LA said, "Gamma knife surgery involves no knives and no surgery, but those are the terms people comprehend so that's our reference."

To help people understand the procedure, Cleveland Clinic has developed patient resources, including a Gamma Knife Treatment Guide. This gives a better overview of the procedure I went through than I can, but I can add some personal details about what I encountered. I hope the details will be of interest to you; they're certainly of interest to me!

First off: The head frame is fitted with screws directly against the skull in 4 places, very like installing a glass lampshade on a floor lamp. Small plugs (between 1/16" and 1/8" in size) are cut through the skin for direct contact with bone, but there's no penetration into the bone. The head frame in essence allows the patient to become a part of the table during the procedure. The only bleeding I experienced was at the pin site on the right side of my forehead. Given how head wounds can bleed, no surprise that something flowed at the end of the day!

What's so important about being "part of the table"? The precision involved with this procedure is mind-numbing. It takes longer to map the procedure than it does to perform it, for most patients. In my case, the mapping took 4 hours and the zapping took 2-1/2 hours. As Dr. LA and Dr. Sam C both stated, "We're dealing with the brain, not a toe." I am still blown away by the idea of radiation from 192 sources focused on tissue to sub-millimetric accuracy, but if it can be done why demur? So being "part of the table" allows that precision throughout the procedure, and the computer controls allow the team to start, stop and adjust as needed.

I realized part-way through the procedure that "women of a certain age" have a distinct advantage over men during gamma knife: we've all slept on a headful of curlers at some point in our lives, and from that experience we learned how to balance the skull on an uncomfortable surface while relaxing the neck. I haven't slept on curlers since high school over 40 years ago and I still remembered that trick! (Eat your hearts out, guys!)

Stopping and starting the table at will is an advantage for the patient as well. The cylinder is generously sized, the table is comfortable, and the imaging is quiet - no banging magnets, no buzzing, no disruption. I hadn't expected to feel quite so pampered, actually. A nurse was on call for me at all times. About half-way through the procedure my nose started to itch, so I asked that we stop so I could scratch it. That turned into a trip to the waiting room to visit with Saint H and sister/friend M while I retrieved some saline spray and got more comfortable, a little "walkabout" and stretch, and a trip to the bathroom. When I felt ready, I went back in, got repositioned, and continued.

I've given myself plenty of time this week to recuperate. Of all that happened, the most troublesome is the bruising at the pin sites but that's nearly cleared up, and I've had to take some non-aspirin pain reliever from time to time for slight headaches, but that is it.

Who wouldn't like surgery without cuts, bleeding, pain, or recuperation? I ask you!

Surgery in Street Clothes

2010-02-24T10:08:00.004-05:00

Yesterday I sent out messages to my "sporadic updates" lists to let everyone know how the procedure had come out, and late afternoon I spoke with my dear sister J. I told her that, on the whole, everyone had complied with my request not to call; I had decided to take several days apart to make certain that I had no headaches, that I didn't overtax myself, that I could adjust to new medication schedules, and get my head wrapped around the whole process, before I settled into visits and talks. She commented, "This all seems to science-fiction! When we were kids, could you have imagined anything like this happening?" And I had to acknowledge, no, I couldn't.

The film Fantastic Voyage comes to mind somehow, with little miniaturized scientists jetting through my head, zapping tissue amidst all types of improbable barriers and dangers. That just doesn't square somehow with being comfortably placed on a table in street clothes, and having someone pop one of my favorite CDs by the Gipsy Kings into the stereo system.

We have friends here who have 25 years of experience dealing with her brain tumors and subsequent medications, surgeries, radiations, and life changes. She's maintained a loving relationship with her friends and her family; she's upbeat, and accepts the limitations that have come with her condition gracefully and inspirationally. Science fiction can't begin to describe how things have changed over the years with treatment options. Even more, science fiction doesn't approach the amazing abilities of the human body and mind to cope.

I'm back to knitting, working my way through small projects. It's a fabulous relief to be able to comprehend my "alternate universe" of stick and string without panic.

Wheel of Fortune

2010-02-18T00:28:00.003-05:00

Last week's scheduled evaluation led to a pass to the next round of the clinical trial, so I made the next block of hotel reservations, and prepared to return to Cleveland this Monday past for the first treatment of Round 8. My friend and sister M volunteered to drive so we could catch up after a couple of weeks without time together. Last Friday I settled down on the couch with Marmaduke and my knitting to watch the Opening Ceremony of the Olympics, and realized to my horror that I couldn't comprehend a simple pattern and translate it into knitting stitches.

Then I tried to make some written notes on a photocopy so I could reduce my planned project packet to a more manageable size and leave a book behind. I couldn't write in a straight line and I couldn't control my handwriting. By this time I was thoroughly spooked, and sent an email to Dr. G to notify him of my concerns. As I was heading up anyway, we scheduled an additional appointment for an MRI of the brain, something that we hadn't done for some time.

Late Monday afternoon we completed the scan and returned to Dr. G's office for the results.

I am now off the clinical trial, as we discovered several lesions on the brain with attendant swelling that was causing my cognitive problems. I was immediately admitted to the Cleveland Clinic Hospital to start steroid therapy to reduce the edema in the brain, and for consultations with neurology and radiation oncology specialists on Tuesday. M's husband the valiant Mr. C battled a raging snowstorm to bring Saint H and sister C2 to Cleveland. We traded family members, and Saint H and C2 settled in at the hotel for the consultation results.

Tuesday I spoke with neurosurgeon Dr. LA and radiation oncologist Dr. Sam C, and we charted our next move: I'm scheduled tomorrow, Thursday, for a gamma knife procedure, an all-day funfest starting at 7:30 a.m. and ending who knows when?

I'm comforted to know that Cleveland Clinic has been doing this since 1997, and Dr. LA has done some 300 procedures and works closely with RCC patients. I'm surprised and somewhat startled that this is done on an outpatient basis - I stayed in the hospital on Dr. G's orders to avoid having to go home and return in a snowstorm and to get started on therapy as quickly as possible. I was discharged, moved into the hotel, and have enjoyed the time intervening with my dearest boy and my dearest friends.

I miss my cats, I miss my house, I miss sleeping in my own bed. I expect I won't get home until Friday due to the observation period required after the procedure.

I don't know what comes next. I consider myself lucky - we were able to take quick action and I'm in excellent hands. I know several folks who have gone through the procedure and done just fine, and I'm expecting to do just fine myself. I'm not looking forward to the expected headaches and the imposed immobility for however long the procedure takes.

I know the chances of survival with good results from this procedure are impressive; as I told Dr. LA, "I like your odds for me better than mine."

So I hope soon to be able to tell you what this turn of the wheel involves. Spare a good thought for me.

Digging Out, Redux

2010-02-08T11:41:00.004-05:00

Our snow removal buddy JR spent an hour and a half yesterday digging out our lane. I suppose we are lucky; we only got 18" of snow and we didn't have to go anywhere urgently, so it was no big deal that we were snowed in for 3 nights and 2 days. Snow drifted to about 4 feet along the lane and, as the wind had shifted several times, it was thoroughly plugged. JR was here 4 times over the weekend just "keeping ahead" until the wind stopped.

This morning we were treated to a thick coating of hoarfrost, caused when water vapor sublimates on very cold surfaces; e.g., as last night, when heavy fog in the air met the surface of everything exposed to the subzero temperatures we had. It's beautiful and seldom lasts long; we've seen it quite a bit this year. If I could see the northern lights as well this winter I'd be happy!

Not to say that I'm not happy, of course - I am. Things continue well, in my opinion, and we'll head to Cleveland tomorrow for tests on Wednesday to see how things are going. I'm always edgy while waiting for the test results to come back, but have no symptoms to suggest that anything has changed drastically.

Oh - we're due for more snow tomorrow, possibly as much as 6". JR has already agreed to come back on Wednesday before we get home to dig out again, if necessary. We're very glad to know him!

Thank goodness that's over

2010-02-04T07:05:00.002-05:00

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!

Going Forward

2010-01-11T21:34:00.003-05:00

At long last we've gotten through 2009, a fairly miserable year for so many people that I hope we never see its equal. On the whole I feel I got through it with few scrapes, and I know I'm lucky.

We were in Cleveland for evaluations on December 30, and I'm stable still, so we are moving forward with Cycle 7 of the clinical trial. The worst side effect continues to be fatigue - I'm tempted to say "the only side effect" but I don't know that for certain. I do know that this drug seems to be tolerated well by participants, from the scanty reports I've heard. The company was able to get the full complement of trial patients for the study. That's a pretty good mark on its own; many trials run into trouble amassing the target study group, whether that's due to stringent prerequisites for participation, or adverse reactions leading to patient dropouts.

During December I started having pain between my right scapula and my spine - nothing drastic, but a fairly constant dull ache. The pain felt very much like pressure on a nerve, similar to what I'd experienced in 2004 while recovering from my liver resection. At that time I developed an abscess that extended from my liver to mid-back behind the right lung, and I was in constant pain from it. Only after we discovered and drained the abscess did I get relief.

For this round I jokingly suggested that it might be my cooking habits - maybe I was straining a muscle while chopping vegetables? I asked Dr. G to review my November C/T scans with me prior to my second treatment in the cycle; even though I'd joked about my cooking habits I had in fact altered my kitchen setup, but there was no change in the pain or its location. We moved through frame by frame and discovered that the tumor in my right lung is now pressing against one of my ribs, and that appears to be the cause of my discomfort.

So what does that mean? I feel better knowing what the problem is, and we're in no hurry to take me off the trial - Dr. G still refers to it as my "body vacation" from other treatments. We may reassess my pain medication, though for now my regular routine is enough to keep it at bay. We may look more closely down the road at some type of Gamma knife or Novalis procedure.

We continue to have options, even beyond available therapies. I'm so very glad to have such good teams to work with.

Keeping On Keeping On

2009-12-10T22:45:00.002-05:00

Sorry for dearth of postings. Things are settled into a routine for now, with many wishes that this will continue. I had my evaluation tests for Round 5 on November 20, and was passed on to participate in Round 6; I'm now two treatments into Round 6, and will finish up the year with evaluations on December 30.

So far the results continue as before: the liver lesions continue to shrink, and the lesion in my right lung continues to grow. In April, when I signed on for the clinical trial, the lung lesion stood at 2.7 cm in size. On November 20 it had reached 5.4 cm in size. Dr. G delivered this news with a wry smile and a comment, "I can see that you are going to keep presenting us with challenges. What am I to do with you, with only one site showing activity?"

What he had to say next was very unexpected: "I think we might want to look into radio frequency ablation. You brought it up some time ago when we were faced with liver lesions and, while I'm not a great believer in RFA, I think we could make a good case for it for you. It's good for single site tumors, it works well with the lung, and it's a good choice for those who might not do well under standard surgical procedures. We've already discussed that; I think you present too many potential morbidities to be a good surgical candidate. So, they may just tell me I'm crazy, and maybe I am, but we might as well ask. Who knows, there might be a chance for you to go several additional years without further incidents, if we were able to pursue it."

To this point, as I've been undergoing successive drug therapies, the decision has been between Dr. G, Saint H, and me. I don't know what such pursuit entails; I know from some of my fellow Cleveland Clinic patients that their cases have undergone an internal review when other treatments are being considered. I don't know what timeline we're looking at - do we wait to see how long I can stay on the clinical trial before we even start asking? Do we pursue other drug treatments before surgery is considered?

Until I hear more, I will just continue with the clinical trial and hope that we keep on getting reasonable results.

Kudos!

2009-11-18T15:09:00.006-05:00

Last Saturday the Marion County Health Department held an H1N1 clinic at Marion Harding High School, open to all in the high-risk categories. The only previous clinic had focused on the "Tier 1" risk patients, children under 18 and pregnant women, plus childcare providers. I wasn't sure what to expect but at least the weather was decent.

I got to the school at 9:10 a.m., a few minutes after the clinic started. Screeners were stationed at the outside doors, verifying that potential patients were indeed in the high-risk categories; those who weren't were turned aside. Each person in line was handed a number as they came through the door; I was number 433. A long hallway had been partitioned so that plenty of people could be accomodated in line.

More screeners waited inside the gymnasium doors: "How many are in your party?" Onesies and twosies were passed to the first line; those with three or four were handed off to another line, and parties of five or more were sent to yet another line. Once sorted into lines, there were registrars taking people's identification, printing out their forms, and passing out cardboard blanks and pens for people to use while filling out their forms. When completed, another helper took the cardboard and pen, and the patient stepped up to the injection table. For larger parties, there were multiple injection tables.

At each injection table, two medics were giving the vaccine, and one person filled the syringes. I pulled my left arm out of my sweater, rolled up my short-sleeve shirt, got my injection and headed for home.

Admittedly I was in the "express line" for the onesies and twosies, but I was out the door in about 20 minutes - having spent the longest time getting from the outside door to the gymnasium door. But, given the chaos that's been shown on the news since all this started, I have to say I was very impressed with the smooth run from start to finish. Even the kids walking out the doors were, for the most part, smiling and ready to get on with their lovely Saturday. Hooray for a smartly-run process!

We go tomorrow night to Cleveland for the evaluations on Friday. If all goes well, I'm on to cycle 6 next week.

Well, They Did Ask Me

2009-10-23T15:21:00.003-04:00

"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?

2009-10-15T17:53:00.004-04:00

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!

Cycling On

2009-10-09T02:03:00.003-04:00

Wednesday found us at the Cleveland Clinic for yet another evaluation set. As the appointments didn't start until 11:00 a.m., we chose to drive up early in the morning rather than staying the night before in Cleveland.

This time, to see if there were anything behind my reported "fullness" in my neck and slight difficulty in swallowing, I had two C/T scans scheduled, which seemed to make the day stretch even longer than usual. We bounced around from spot to spot (Saint H got in a lot of good step totals on the pedometer they're using at work for a wellness challenge), managed to get in early for every appointment, and topped off the day with a short nap while waiting for Dr. G to arrive with results.

The results were worth waiting for, believe me. First, the C/T scan of the neck revealed no growths or suspicious tissue, only the calcifications in my salivary glands that we already knew about. We're pretty much agreed that the problem is tied to dry mouth. Amongst the easy remedies: have water available at meals for small sips to help lubricate my throat, take small bites, and chew well to make certain that there's nothing left to "bulk up" on the way down. Well, these reflect good manners and general nutritional wisdom, so I'm happily able to comply with orders.

Second, all my labs are consistent. My hemoglobin levels are still low but have only just begun showing a drop below 10 (9.8 this time), so we'll be watching that closely every two weeks. All the other results are high or low as expected for someone with RCC, one kidney, and liver damage. Should I need to return to Aranesp injections, that could easily be accommodated with my treatment schedule. I've discussed potential problems with Aranesp here before so I won't rehash, but Dr. G decided (and Dr. SC concurred) that I would not likely fall under insurance strictures as both Cleveland Clinic and OSU comply with the strict application guidelines.

Third, and most gratifying, the scan results show net tumor growth of zero percent from the May benchmark. The lesion in my right lung is still growing, very slowly, but for the moment it's completely offset by continued reduction of lesions in my liver.

We always finish the appointment with a discussion of next steps, and Wednesday was no exception: I'll continue on the clinical trial, we're rank-ordering further treatment options, and we'll probably never do surgery again. Dr. G's broader assessment of surgery expanded this time from the short "probably not" of my last query. Though it would be nice to be able to excise the one active lesion and be so-called "disease free" for a while, he described the surgical process more fully. Basically, we'd be facing a lobectomy, with removal of at least the upper right lobe; lesion size and location are too much for a simple "wedge" excision. The surgery would involve a full horizontal abdominal opening, possibly a chest cracking, and way too much internal rearranging to suit my taste. In Dr. G's words, "For you, this would be a morbid process." Put it that way and my natural disinclination to surgery is increased immeasurably! It took eight months to fully recover from my liver resection, and I swore I'd never go through that again. Thank goodness my doctor agrees with me!

We left in the height of rush hour and got home at 9:00 p.m., with a stop for dinner along the way. We've decided the one-day trips with full appointment load are way too taxing to undertake again. Whoopee, more hotel points, I guess.

A Tale of Two Kitties

2009-09-11T21:37:00.004-04:00

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.

What Have We Got But Time?

2009-09-02T17:49:00.003-04:00

Monday's treatment session seemed to be following its usual path - checking in for labs, moving on to appointments with the medical powers-that-be, culminating in my Benadryl-induced nap. There was a jarring interruption to this routine, however.

As trial nurse Lisa mentioned in our appointment last week, "Chemo time is like gold here - a scarce resource. I want to get your schedule set at least six weeks in advance so we have the best chance to retain what we've got established." Sure, there are times I feel like we're cutting it a bit fine, but on the whole it's all manageable and works well for patient and personnel alike.

What with one thing and another our arrival in Pod 1 for treatment was delayed by about 40 minutes, and the usual wait ensued for my custom-blended infusion to come from Pharmacy. I was settled in with my knitting and Saint H had something to read. Suddenly the woman in the next bed began shouting for the nurses. "I was scheduled to get in here at 9:30 and didn't get brought back until 9:45. I've been waiting an hour. I do not have time to wait around like this. You get this thing out of me, NOW!" She continued to rant at the nurses with almost hysterical fervor. She refused to be calmed and, at her insistence, her IV was removed and she stormed out.

I think we were all rather taken aback. I certainly don't understand the motivation for her outburst - was it a first treatment? Was she frightened? Was she not adequately prepared by her oncologist about what she would be going through, and why the recommended treatment course was being pursued? Did she not absorb anything beyond the diagnosis?

Whatever the reason, I see no cause for the nurses to bear the brunt of her unhappiness. I think it's fair to say that she doesn't have the same type of relationship with her oncologist that I am fortunate to have with mine.

If I had a nickel for every minute I've spent in waiting rooms and in limbo since my diagnosis, I'd be a very rich woman now. Come to think of it, I guess I am a very rich woman - after all, I'm still here.

"I've Fallen and ..."

2009-08-25T08:11:00.003-04:00

Last week I was bustling around, dashing for a phone or some such nonsense; I got my feet tangled up with a small footstool and pitched sideways into a pile of knitting projects (good) and an iron-bound antique trunk (bad). My shoulder took the full force of the blow against the trunk. I saw stars, I said bad words, and then slowly got to my feet again and called Saint H in from the pasture. I couldn't feel my right hand and couldn't breathe very well.

He checked me out carefully - large swelling at point of impact accompanied by a bruise that started showing up within minutes; shaken up but otherwise okay. So far the bruising hasn't fully developed and I think it will be a doozey, and my arm protests if I try to raise it above shoulder height perpendicularly to my body, but it could have been much worse.

While I've never been exactly graceful, I've always had good balance and for the most part have managed to stay on my feet when I've lost my balance temporarily. Several times in the past few years, though, it's been quite different. If I've been in the hospital for more than a week I'm very unsteady on my feet when I get out, and I've got scars on the bridge of my nose and my upper lip to prove that, from two separate falls. I often feel very disoriented now when I fall, and I seem to be less able to save myself from falling.

I know extended stays in the hospital contribute to muscle weakness. Maybe the rest of it is age, or maybe I'm starting to get scared of falling since I've hurt myself a couple of times. I can say, based on my experiences, that I'm less likely to laugh at the cheesy Life-Alert commercial now. It's not so funny when you're down there yourself.

Kick In The Teeth

2009-08-07T14:49:00.003-04:00

Well, crap. Last week, insurance paperwork, billings and all from the first of the year finally worked all the way through the mill and I sent off the usual $900+ check to Cleveland Clinic to settle my annual out-of-pocket requirements. Hooray, no more unknowns, just the usual copays, prescriptions and incidentals for the rest of the year.

But wait! Yesterday I went to the dentist for a regularly-scheduled cleaning, and we found yet another cracked tooth. The rear right lower molar has cracks in all four directions, plus a couple of chips, plus decay along the edge of a filling that went in about 3 years ago. That's 3 cracked teeth in the last 2 years, folks. Some of my other teeth are now developing chips on their cutting edges, too. And the remedy for a cracked tooth, of course, is another crown. Crap!!!

Vivian asked, "Do you grind your teeth?" "No, I don't think so ..." "Well, what about dry mouth from your medications?" Oh, yes, indeed - what about dry mouth?

Dr. K doesn't think that there have been any studies about the relation between dry mouth, cancer medications, and dental problems. I'm ready to believe it, though - I have always taken care of my teeth, and I'm stunned by the amount of dental work I've had to go through in the last 3 years. Saliva acts as a lubricant, and without it the teeth bang against each other - grinding without grinding, as it were.

My schedule stinks, as does my bank account; I'm going to put off getting the crown as long as I can. For now I've got a prescription toothpaste, Colgate PreviDent 5000 Dry Mouth, Biotene mouthwash samples, and strict instructions to brush and floss religiously, and chew carefully. We may look into some sort of mouthguard as well, in the meantime. And I think I'll start doing some reading up in the dental literature too. At least the toothpaste doesn't make me gag, so far.

Fifty-Seven

2009-07-25T09:44:00.003-04:00

Yesterday was yet another birthday; another year has rolled past, adding another digit to my sum of years. (I won't speculate about whether or not I've grown in wisdom; probably not!) I have to say it's a lot better to keep adding the years! For all the lip service we pay to "accepting" that one's lifespan is unknown, I'd rather keep on than not. Anyway, here's to another year of discoveries.

Monday's visit to Cleveland Clinic involved meeting a new specialist intern who's spending time with the kidney cancer team. He went to great pains to reassure me that Dr. G is still my principal caregiver, and that he hoped I would trust him to treat me as well as any other Clinic staff member. I congratulated him on being chosen to work with the best available (in my no doubt biased opinion) and assured him that I would hold him equal to my expectations of care from Cleveland Clinic.

When Dr. G popped in a few minutes later, I asked him specifically how much growth we measured in last week's scan. Two of the liver tumors shrank slightly; the lung tumor expanded from 3.9 cm to 5.4 cm, and the total represented a 9% growth overall. So, I don't know if I'll be able to stay on the trial beyond this cycle (once I go beyond 20% they'd have to remove me). We can but wait to see. In the meantime, my vacation from side effects continues!

We've been enjoying a surprising month - no expectation of reaching a 90-degree day at all for the month, so very unusual in Ohio. This is shaping up to be perhaps the coolest July on record - right now we're about 4.5 degrees below the normal average high. We may be getting more rain (2" since Wednesday) through the end of the month; good and bad, since we'll soon have to cut hay again. Let's hope that we get a little slot of dry weather in the next couple of weeks.

"How Dry I Am"?

2009-07-17T11:29:00.007-04:00

"We have to hydrate you for 2 hours before we can do your CT scan. Your labs showed a creatinine level of 1.38, so your glomerular filtration rate is 40, and the contrast dye will be too slow to clear from your kidney at that rate." The CT scan nurse let that sink in, and then said, "You didn't hear this from me, but next time, before your labs, drink water. I know you're not supposed to for the scan, but you're dehydrated. Your labs will come out better and we won't have to do this again."

Schedules at the Cleveland Clinic are built under the assumption that all will be well. In this case, I was thrown way out of whack, so I was 45 minutes late to my bone scan, didn't get lunch until 2:00, and didn't get to see Dr. G until 2:45. By being late to my bone scan I probably disrupted all subsequent appointments - not my fault, not the CT folks' fault, but the nuclear med techs were definitely unhappy about it. Every bone scan takes a minimum of 20 minutes and can take much longer depending on requested details and the radiologist's speed at reading them. So one wrinkle in the day's fabric begets another, and another ...

There was a bit of growth in the lung tumor but I still qualify as "stable" for the clinical trial. Hence, we go forward with it for as long as we can. Onward for the next six weeks!

An aside: I lived in Indianapolis for a number of years in the vicinity of 52nd and College. I was just up the street from the home of Frances Farmer, and around the corner from the fabulous Red Key Tavern (haunt of Kurt Vonnegut and featured in Dan Wakefield's book Going All The Way). Its neon sign depicts the first four notes of "How Dry I Am." (Yep, those sight-reading skills from grade school have come in handy through the years; thanks, Mr. S!)

Aches and Pains

2009-07-09T14:10:00.003-04:00

I might as well catalog what remains with me since going off Nexavar. I stopped using it in February when it became apparent that the tumor in my right lung was growing; I figured it would take some months to see what side effects would stick with me.

I still have some edema in my legs and feet, particularly my left foot. Perhaps this is related to the relative severity of hand/foot that I had in my left foot, whenever those episodes cropped up? At any rate, if I'm on my feet for long periods of time and especially if the weather is hot, or if I'm sitting still for long periods, my left foot invariably swells. The skin on my left shin is always slightly tender, and I've had swelling as far up as my knee on really bad days. Last week Dr. SC at OSU told me that most of his renal cell patients have swelling in the lower limbs, so I guess I should not be surprised. Whether it's a condition of the disease or of the drugs, I can't say. Since February the severity has gradually decreased, so what's left I can certainly live with.

I still have joint pain. Again, this seems to be a common and relatively permanent result of taking antiangiogenic drugs. It's controlled with Dilaudid, and I can live with it.

I still have fatigue. I generally get up with Saint H to see him off, and now I stay up for a couple of hours beyond his leaving so that I can give Duke his morning insulin shot. Then I'm ready to stretch out for a couple of hours; often I end up taking a nap in the afternoon, aided and abetted by Duke. I have been fatigued since long before my diagnosis, but it's gradually gotten better over the last four years. Generally, so long as I don't overextend, I can keep up with everything needed to run the house. I can live with that.

Today is lightly overcast, and tomorrow promises to return to real July heat and humidity. The fledgling barn swallows are perched in the shade on the back of the house, squalling to be fed and the adults are wheeling through the air obliging them. I can definitely live with that, too!

Time Marches On

2009-07-08T06:44:00.003-04:00

Yes, I've gotten out of the habit of posting; in part because I'm uncertain how much I can say about the trial. And, I'm afraid, as a creature of habit, going without my laptop for all that time this spring broke my daily routine - I don't check my email daily; I don't read the online newspapers; I don't post to my blogs; I don't read my friends' blogs consistently. I'll try to be better about it ...

Monday's trip to Cleveland, the third treatment in the second cycle, brought an interesting observation. I can't predict how I will react to the Benadryl dose at all! I was deeply asleep moments after the stuff was administered, and stayed deeply asleep for the afternoon; it carried over as aching dopiness into Tuesday afternoon. I really dislike being subjected to that level of disorientation. But, having heard a description of reaction to the trial medication unmitigated by Benadryl, the discomfort is quite bearable by comparison. According to Nurse Vicki, the pre-meds were added to the protocol after several patients experienced wild fluctuations in blood pressure and heart rate, and respiratory distress of a frightening magnitude. She said, "It took two hours each to stabilize the two patients here who suffered from these reactions, and we don't ever want patient and family to have to go through that if we can help it."

I'd love to know more about how health professionals, the companies, the NIH and the FDA negotiate changes to the protocol as a clinical trial progresses. I'll be doing a little poking about; if I can find anything out I'll pass it along.

Shades of the past: We finally got barn swallows to nest in the tractor shed this year. Yesterday the first two of the brood fledged, following their parents to perch on the house gutters while the adults hunted. Last night at dusk Saint H and I were sitting on the front porch glider, watching them dive-bomb outside kitty Jezebel as she came from the barn to join us on the porch. When I was growing up, we always knew when indoor/outdoor cat Denny was coming back to the house by the dive-bombing barn swallows. I've been waiting for a long time to see this again!

Just One Of Those Days

2009-06-06T19:25:00.003-04:00

Yesterday we went through the end-of-cycle screening tests. The all-day affair was not quite a comedy of errors, but we ran into a few oddments through the day, including an hour-and-a-half wait for the C/T scan. For some reason all C/T scans were taking place in the central facility rather than that of the Taussig Cancer Center (where one rarely has to wait more than 5 or 10 minutes).

I've had enough experience with these to wear no metal - pull-on elastic waisted pants, no jewelry, no zippers - so I don't have to strip down and wear a gown. It's a lot more comfortable and in the long run a lot quicker. While I waited for the scan, I ended up with my arms wrapped around a stranger; a woman in her early 40s, already a cervical cancer survivor, facing something unknown, possibly pancreatic cancer. She was cold, nauseated, and frightened, and I just couldn't sit there and leave her to her demons. I tried to keep her warm, and I let her talk.

I think everyone with cancer has hit the wall, the low point, whatever one wishes to call it, and we all hit it more than once over time. I've always had friends and family there to talk me through it. Can we do anything less than return the favor when needed?

Screening tests turned out well enough that I'm still in the trial. Onward and upward - back to Cleveland tomorrow for Monday's treatment.

Little Ol' Deviant Me

2009-06-02T11:42:00.002-04:00

Well, I've been busy since the last posting. My computer is now fixed (fingers crossed that it stays that way). We've completed the first 3 treatments on the clinical trial and I've not had significant side effects to date. However, last week we ran head-on into one of the "things one signs on for" in agreeing to a clinical trial.

Every clinical trial should include a contract, of sorts, between the trial and the patient. I signed one which outlined the side effects, documented the intent of the trial, and specifically stated what responsibilities I have as a participant.

Wednesday afternoon, in the midst of terrible storms and changeable weather, I had a terrible migraine. Later in the evening I developed a fever of 101.2 degrees. I thought to consult the document I'd signed and, lo and behold, I was to call in and report to the Cleveland Clinic for further information, if I had a fever over 100.5 degrees. The oncology fellow on call directed me to go to an emergency room, so off we went to OSU ER, at about 11:30 p.m. After consulting with the Cleveland Clinic, the ER docs bundled me off to the James for admittance, where I landed about 3:30 a.m. At Cleveland Clinic's direction I was placed on an IV course of antibiotics and settled in for the results of blood cultures.

By the time I was in the James, my fever had gone, but we had to wait for 24 hours for the results to come back. I was finally released after observation and constant dosing on antibiotics on Friday afternoon. I now have 4 new antibiotics on my drug sensitivity list, woo-hoo!! Basically they could find nothing wrong with me (I'd suspected that all along, since I have a history of reacting badly to weather changes).

On Sunday I went off for a haircut and lunch with friends. Later that evening I got violently sick to my stomach; I offer no details but it was distressing and unpleasant. I had no temperature and was finally able to sleep once the vomiting was over. The patient contract said to call in if more than one episode of vomiting occurred during a day; I figured it was essentially one long episode and decided I wasn't reporting in.

On Monday morning I called in to Nurse Vicki, told her that I'd had vomiting the day before and was feeling okay but didn't really want to make the trip up that day; would that invalidate my trial participation? She said, "I'll just note this as a deviation, that you didn't come in for your appointment, and I'll see you on Friday for the screening tests."

So now, I'm a deviation from the standard protocol. I'm glad that I didn't get bounced off the trial for missing my last appointment of the cycle, and I'm glad I don't have to make the weekly trek anymore. Let's just hope that the screening tests go well on Friday so I can start treatments again next week.

Bam!

2009-05-12T15:41:00.002-04:00

We went off to Cleveland for the second treatment yesterday. We spent less time at Club Vampire - no need to search for veins, thank you very much. The trial protocol requires only an hour's monitoring for the second and third treatments in each cycle, so the waiting time was cut by three hours.

I'd always maintained that Benadryl doesn't affect me, when warned of its drowsy factor. I now have to amend that. Benadryl in pill form hasn't affected me in the past, and may not do so in the future. However, Benadryl as an infusion is another matter altogether.

Picture yourself sitting quietly in a chair, talking with your beloved and your friendly nurse. You've got a pile of knitting on your lap and lots of free time in your near future; it's a wonderful prospect provided that you don't get sick or have a reaction to the treatment. Then someone steps up with needle in hand, says, "Here's your pre-medication dose of Benadryl," and it's injected into the line leading to your port and thence directly into your bloodstream.

Suddenly you feel not quite sick, not quite awake and not quite coherent. Your knitting is in hands that don't belong to your body; your loved one is floating away, and your nurse is asking you questions that your brain can't process. For my part, I feel like the inside of my mouth has suddenly been sprayed with glue. I've called into a local radio talk show a couple of times, and find the slight delay between speaking and broadcast to be very disconcerting. Being on Benadryl is a lot like that!

I have to say I've fallen asleep very quickly both times, and suspect that this will become the new normal routine. Likewise, it seems to take a long time for the effects to wear off, but sometime around mid-afternoon I've managed to start feeling normal again, both times. I hope that will also continue to be the norm.

Since we got out early, we managed to squeeze in a visit to Cleveland's fabulous West Side Market. Eleven dollars bought us almost more produce than we could stagger away with; and we didn't even make it all the way around the market. I see more trips there in the future!

My laptop is being evaluated for repair. I hope to have it back soon; friend M has given me carte blanche to use her desktop machine whenever I need to. So email is backing up and I'm not looking forward to plowing through it all when the time comes ...

One Week Down

2009-05-05T14:22:00.003-04:00

Yesterday C2 and I made a marathon run to Cleveland and back for tests and appointments. I've been able to report no new symptoms, no surprising problems, no increase in old symptoms, other than a bad adhesive tape reaction over my port.

The one thing that came back from blood tests that we'll have to watch is hemoglobin levels; I've dropped from 10 last week to 9.5 this week. I'll be reading up more on side effects from the mystery drug, and will give a precis here.

I saw Dr. G for a fleeting moment - he was out last week and the first day back was overbooked (his usual approach is that of a whirlwind, anyway, so big surprise). He signed the FMLA paperwork for Saint H so that days off can be garnered as needed; we sat down last night to make sure we could decipher the handwriting. Certainly Dr. G passes the "if it's illegible he must be a doctor" test!

Most of the time with nurses Shari, Vicki and Lisa was spent laughing. If Vicki had any doubts that I'm crazy, I'm sure those have been dispelled. Shari has known for a looooooong time!

My laptop is giving me fits; I'm doing what I can when I can, and hope that a new AC adapter will take care of the problem. Grrr.

Resolving a Morel Dilemma

2009-05-03T21:29:00.003-04:00

Saturday evening I was prepping stuff for dinner when Saint H announced, "I think I'll go mow." We'd had 3" of rain in the past couple of days but it had held off most of Saturday, with sun and wind drying things out, and the grass was taking over. So I went on working, keeping an ear cocked for mowing progress, so I could make a stab at getting dinner on the table at a reasonable hour.

No mowing - so I figured he'd had to sharpen a blade, or was cleaning the mower, or had gotten distracted by something else that needed doing (that happens to both of us pretty frequently!) He strolled into the house finally: "I didn't get any mowing done. I went down to check on a sparrow trap, and started clearing up some of the junk that's piled in the corner of the woods. I found these ..." and held out a baseball cap full of morel mushrooms.

Needless to say, the lack of mowing was forgiven immediately! Cooked in a hot cast iron skillet with butter and pepper, they made a great addition to supper. The problem was, there wasn't much left over to share for another meal. I was ready to cede them to him; after all, he did the work to gather them and he cooked them to perfection. But he solved the problem by bringing in another mess tonight. They're cooked and waiting for supper tomorrow! Yum!

Club Vampire

2009-05-01T16:41:00.004-04:00

Well, I'm home from the first set of appointments for the clinical trial. I missed the cats, I missed my bed, I missed being home, but overall things appear to have gone pretty well.

At the appointed time on Monday we went to "Pod 4" to begin the treatment. The treatment on day 1 involves multiple blood tests over a 4-hour time period. Remember my reservations about using my veins for blood collection during the treatment? Poor Vicki started looking at my veins and immediately called over other nurses: "Who's the best stick here? Who wants to try this first?" Eileen, the regular attendant, tackled the outside of my left forearm, but admitted defeat after about a minute. Vicki then surveyed the back of my right hand and asked about one likely spot. "Yeah, it looks promising but I can tell you that it's been blown at least twice over the past 5 years," I responded. She found another potential vein and went in, telling me to relax and keep my hand still; naturally I tensed up and my hand started jerking, and the vein blew immediately. Then JoAnne, the acknowledged expert, was recruited; by this time I was in tears and facing the possibility that I might be refused entry into the trial. JoAnne tapped into a spot outside my right elbow. Moments later, that one blew too, and she saw no other likely veins to try. I had visions of the time several years ago when I needed a bone scan and endured seven sticks before the contrast medium could be injected; I can't begin to communicate how miserable I was after that experience, almost to the point of nausea.

Fortunately, Vicki, Eileen and JoAnne decided enough was enough. I brought up my port: "It's a dual lumen port; can't we at least try it?" Vicki decided to make a plea to the company and went off for a phone call. She came back a few minutes later, all smiles - so long as we're consistent and always use the same lumen for blood draws, the company is willing to let us use my port for both blood draws and infusions. Perfect!!

Vicki's got years of experience with clinical trials. She has nothing but praise for this company - they're considerate of patient needs; her calls get priority and are directed to decision-makers, not to intermediaries; they get back to her quickly and make decisions on the spot. If she's happy, I'm happy.

All the while I was getting stuck, the patient in the neighboring chair was also being searched for veins. Turns out he's also in the clinical trial, so we joked about seeing one another again at "Club Vampire" in two weeks.

No Names, No Claims

2009-04-14T16:35:00.003-04:00

We spent a riotous (ha) day in Cleveland yesterday. It started off with a bang - whoever set up my appointments didn't include labwork, which always has to go first in our quest. So we ended up being about an hour behind all day, playing catchup with the schedule. Fortunately, everyone there is flexible and everyone makes things work as best they can under trying circumstances.

After labwork, an EKG, a bone scan, and C/T scan, I have been deemed healthy enough to begin the clinical trial on the 27th. Vicki passed along the further, good news, that the drug company's legal department had reviewed my request to include information on the clinical trial here. Their judgement: "No names, no claims" but postings are allowed. That is, I can't mention the drug company name or the trial drug's designation, and I can't make any claims about the drug's efficacy, but I can post generally about clinical trials, how the drug affects me, and how I feel, just as I always have. Vicki will be monitoring my efforts, and I don't have a problem with that. I'd hate to see the trial invalidated, or me getting kicked out, because I don't play by the rules.

I once strayed into the corporate world for a little over 5 years. It wasn't a good fit for me, but I certainly got an education on watching one's words. I was generally pretty cautious about what I said and how I said it, probably because I was in user services and had to produce results directly working with customers. Sometimes the folks in Marketing weren't so cautious and I spent a lot of time cleaning up after them. So I understand the concern; I'll do my best to be informative within the guidelines, as I feel that's why I'm here.

We enjoyed confirming a new favorite restaurant in the Cleveland area: Cafe Tandoor. We've hit the Westlake location 3 times and it is consistently wonderful. I foresee numerous stops there over the life of the clinical trial, and beyond.

Just the Fax, Ma'am

2009-04-11T09:08:00.004-04:00

(With apologies to Sgt. Joe Friday of Dragnet fame ...) No joke - April Fool's Day, I got a voicemail from Vicki the clinical trial nurse. Her voice carried a note of controlled panic - could I please call her as soon as possible; there was nothing wrong, but there was an administrative problem that we needed to take care of as quickly as possible. So I settled in for some phone tag, feeling a mite less than reassured.

When we connected in late afternoon, she explained: she'd heard from the company sponsoring the trial. Tuesday, April 7 would be the first day for enrollment of new patients. As we would be in competition with several other institutions for the remaining spots in the trial, could I please, please fax the signed consent form to her no later than 9:00 a.m. on that date? I assured her that we'd figure something out, and set about lining up a fax machine for the proper date.

I mentioned this at the renal cell group meeting that evening. One of the caregivers responded, "FedEx Kinko's is open 24 hours a day." Well, geez, I'm not quite that clueless! It avails me nothing: there's no FedEx Kinko's facility in Marion, Ohio, and I'd have to drive 50 miles to get to one. We have an Office Depot, but it doesn't open until 9:00 a.m.

Fortunately for me, my credit union opens at 7:30 a.m.; when I put the question to them, they were more than happy to oblige me. I've been a member there for nearly 20 years and know everyone in the office pretty well. I sent my fax, and Vicki called to tell me that she'd received it and to thank me for complying with her request. Good heavens, I thought, I should be thanking her for making sure the way forward was as smooth as possible!

We do tend to take things for granted, don't we: "Doesn't everyone have ..." Starbucks? A multiplex theatre? Whole Foods and Trader Joe's? Or medical insurance? Good doctors? Prescription coverage? Adequate care facilities?

Long-Term Effects?

2009-04-05T22:10:00.003-04:00

I had an appointment with Dr SC at OSU on March 31. His nurse K (sweet, blonde, tiny mother of twins) and I were going over the routine questions - how did I feel, what level of fatigue, what meds taken and when - when she mentioned, "I don't know but that you may be one of the longest-term patients ever on Nexavar. Certainly you're our longest-term patient; all our other folks have been off the drug within a year of starting it."

I started thinking then about the side effects that I've gone through, and how I feel now. What's due to Nexavar? What's due to RCC? What's due to advancing years and admittedly lethargic habits?

Unfortunately we think that the joint pain is probably permanent. It's eased somewhat since I went off Nexavar in February, but hands, hips, knees and lower back are still troubling me.

Fatigue is probably permanent too. This past week I started some classes in an adult education program; even cutting back on the number of classes I'd like to take and keeping it to two days a week only, I still found myself longing for the end of the week so I could return to my usual routine for a few days.

I want to review my current medications with Dr. G - is my high blood pressure permanent too? That came with Sutent and Nexavar, and it would be great if I could forego the 3 medications I take for that. Likewise, my hypothyroidism. Could I possibly return, even temporarily, to a state of taking nothing except pain relievers? I suspect that's a dream that won't come true, but it's entertaining to think about it.

Starting the Next Phase

2009-03-28T14:49:00.004-04:00

I'm still not certain what I can and can't say here about the upcoming clinical trial, but I'd guess it's okay to say that we have a start date if all works out. I'll go in for screening on April 13, and if I pass the screening I'll start the trial on April 27.

I don't think I realized just how hard this had hit me, until we finally got the dates outlined. Such a relief! I'd been coasting along for over 3 years with only minor upheavals on Nexavar, knowing with some degree of certainty what each day would bring and what would factor into how I felt overall.

Imagine feeling terrible all the time without knowing why; that was the norm for me from 1998-2000. Being diagnosed with RCC was terrifying but it was also a relief - at least I knew what was wrong with me. Each step since then has had its own challenges. The biggest shock was the liver metastasis in 2003; and that probably comes closest to what I felt when Nexavar finally failed.

Yes, we all tell ourselves that we're being pragmatic and facing up to the fact that metastasis can and probably will happen, or that this or that drug can and probably will cease to be effective over time. Yes, we try to share information with other RCC patients and keep up our knowledge base. Yes, we do what we can to prepare ourselves for change and the next step. It's still not comfortable when the time comes.

I've been awfully depressed about having to face these changes. Maybe it's the equivalent of losing a job and being in limbo until finding another one. All that I know is that I'm glad to have something more definite in front of me now.

Tree swallows have returned as of last Sunday. Spring is offically back!

Waiting Game

2009-03-02T16:43:00.003-05:00

I've been off Nexavar for nearly 2 weeks now and am waiting for things to settle down; I've been nauseous and achy. Is this an effect of going off the drug, or is this weather and exposure to the usual pile of nasty end-of-winter colds and flu?

I've been assured that a spot is being held for me on the clinical trial, but we don't know the schedule yet. The earliest I could start is middle of this month, but will more likely be early April to fall into line with the clinical trial six-week cycle. I'll first have to pass their screening tests which, at this point, we all believe I can do.

I've been huddled up inside today, nauseous and achy as mentioned above, watching the wind whip traces of snow around the house. Winter is holding on grimly here and March has been uniformly nasty and cold so far.

All in all I feel like I'm sitting around twiddling my thumbs, waiting for things to happen. While I wait I'm letting things grind around in my head - not exactly worrying, I guess, but making myself a little anxious about what's to come. Once upon a time I was pretty good at keeping myself all positive, all the time, while waiting for something to happen. It's been a long time since I've had to think beyond the next set of scans, so I hope I can get back into that mindframe quickly this time.

Finnigan Begin Again

2009-02-21T10:11:00.004-05:00

I've gone the rounds with my laptop, reinstalling software, and with my ISP, re-establishing my connection after they did some "upgrades" that left a lot of people offline. I think I'm actually back on a reliable basis now; all I have to do is sift through all the messages that built up in my Inbox while I was unable to connect, whoopee ...

Wednesday we went to Cleveland Clinic for scans. My liver tumors continue to show signs of necrosis, and that's good. The lung tumors have been increasing in size, very slowly, since June. However Wednesday's scans showed that the lung tumors had grown more aggressively in the last 3 months. I've been on Nexavar for over 3 years and, with these results, I'm very very close to an overall 20% growth total. That's a good indication that it's no longer working. We might have tried to increase the dose, of course, but I do develop the side effects so quickly that I doubt it would do much good. So, I'm now off Nexavar and we're evaluating several other options.

I've been expecting this to happen. We are dealing with first round results on new drugs, and nobody has good predictors on how these work or how long they actually prolong life. I'm pleased that the Nexavar worked for as long as it did (over three years!), and that I was able to get good sustainable results on a very low dose with few side effects. I'm also quite lucky in that the active tumors in the lung are still quite small and that I have a very low percentage of active disease compared with other people. A 20% growth indication in this case is actually a very small amount of growth.

Compared with several years ago I feel almost overwhelmed with choices - since that time lots of active research has been going on, and I actually have one FDA-approved drug, two clinical trials, and a second drug currently going through the FDA approval process for kidney cancer treatment to pick from.

At this point I'm leaning toward one of the clinical trials. It's a new type of targeted therapy that uses a protein on the tumor surface as a marker to identify the diseased tissue so that the body's immune system can work more effectively against it. I don't know what the rules are about potential disclosure so I won't mention any specifics here, for now. Hopefully I can say something about it as time goes on, if I am able to qualify for it.

The second clinical trial is for an oral version of the FDA-approved drug Torisel; the oral application is under consideration for FDA approval also. I'm still looking for information on that one.

The FDA-approved drug Torisel is an option, as is Avastin, currently under approval process for advanced RCC.

So, we have a lot of thinking to do about best options. I'll be able to continue with Dr. G at the Cleveland Clinic no matter what we choose, and that's the best news of all as far as I'm concerned!

It seems quite strange to be back in this position again after 3 years, making decisions that affect my overall survival. "Life and death" sounds so melodramatic but I guess it's appropriate.

Digging Out

2009-01-30T11:36:00.004-05:00

Tuesday afternoon Saint H came home sick, staggering with fever, headache and upset stomach. I knew he'd be home for the next day and was grateful that he'd beat the storm predicted for that night and the next day.

Wednesday we got 10" of snow. I called a landscaping contractor to plow us out, as he's done the past two years. Jon got stuck in our lane, not a good sign, but he was able to get us plowed out.

Yesterday I went off to town; the wind shifted while I was gone and I had some trouble getting back to the house. Saint H's doctor called in a prescription for him so I started back to town and got stuck in the lane myself. Saint H came out and we both shoveled, managed to get the car unstuck and backed up the lane to the house for the night.

I called Jon to come back today after the wind shifted - no sense in plowing until then. He's on his way; as soon as he's done we're heading into town to pick up the prescription and a few other things, so we can hunker down for the next storm that's due Monday. I don't know if Saint H will be well enough to go back to work by then or not.

Things were so hectic that I almost forgot about Wednesday's anniversaries - I moved to Ohio 23 years ago, and had my liver resection in five years ago. The move to Ohio was fortuitous on several fronts - I've developed strong friendships and built family relations here; I met Saint H; and I found myself near two wonderful cancer facilities. It was a life-saving move all around.

I guess the snow's a minor inconvenience, all told.

Freeze - Thaw - Repeat

2009-01-26T14:02:00.002-05:00

My logon problems appear to have been resolved for the moment (updates downloaded for numerous programs; who knows what happened and who knows when it will strike again). In the meantime we've cycled through some of the coldest weather I've encountered here. One day last week we had the dubious distinction of being the coldest spot in the state according to the National Weather Service, with a -22F air temp and a -37F wind chill. This weekend we soared up past freezing for the first time in nearly 2 weeks and we actually saw the sun! I forget how much I miss the sunshine here, until we enter the next grey winter cycle (Ohio on average gets 30% available sunshine in winter. Ugh) And now, once again, we've settled into temps below freezing for the rest of this week at least.

Cold weather is a conundrum for me. My favorite seasons are autumn and winter. Since my diagnosis and particularly since my liver resection in 2004, however, I have trouble maintaining a reasonable body temperature. If it's just cold, I feel that I can cope with it pretty well by adding layers. If it's both cold and damp, my joints stiffen and swell, I CANNOT get warm, and I feel useless and depressed. Top that off with grey skies and high winds, and I feel like crawling back into bed for six months or so. At least we're nearly through January now.

Saint H has been diagnosed with essential tremor. He's going in for a sleep study to see if his insomnia and fatigue can be resolved, and perhaps (if so) that will reduce the effects of the essential tremor. Right now it's not too bad but we'll have to watch things carefully. I've been panicked by this and he's been very calm. Blessed man.

Usual and Customary

2009-01-13T16:18:00.003-05:00

Today's New York Times featured an article I've been waiting to see for a long time. Andrew Cuomo, Attorney General of the State of New York, has ordered UnitedHealth Systems to review its database of "usual and customary fees" covered for non-network charges on health insurance costs. The normal procedure, as we all know, is that in-network physicians and institutions have agreed to accept a certain fee for procedures, tests, and office visits; patients are encouraged to go to in-network resources so that the agreed-upon fees will apply, thus saving the insurance company a great deal of money. If a patient chooses a non-network provider, then the patient is responsible for the difference between what the provider charges and the "usual and customary fee". Cuomo alleges that the UnitedHealth database is consistently low-balling the costs, so that the penalty for using a non-network provider is a great financial burden to the patient. The UnitedHealth database is used by nearly all insurance companies as the basis for these costs. It's an interesting concept and I certainly understand the motivation behind it; the "in-network" relationship works well both for the insurance company and the health service provider.

But what happens when the patient has no choice in the matter? All of the local anaesthesiologists are non-network providers, for example. I paid $800 for the anaesthesiologist attending my nephrectomy - what choice would I have had, between undergoing emergency surgery at another hospital, or not having anaesthesia for the operation? Likewise, my lifeflighted trip from the local hospital to OSU was hardly something I had a choice in; I made it to ICU with literally minutes to spare before dying. Was I to have waited for some other helicopter with medical staff to show up? And who determines a "reasonable" cost for emergency transport under those circumstances - what comparable costs can you call for? That $5300 bill was worth it too, so far as I'm concerned, but it's hard for most people to come up with such a sum on short notice. I still keep a reserve in savings for that reason. Anyway, I'll be interested to see what happens with Cuomo's orders.

For the sixth straight week, Saint H will be spending at least one night in Columbus due to weather. Right now it's snowing (4" on the ground); we're supposed to get another 4" tomorrow followed by blizzard conditions. I may not see him until Friday at this rate. Oh well, I have lots of movies to watch ...

Out, Old!

2009-01-01T05:28:00.003-05:00

Well, Happy New Year. I have been awake for 3-1/2 hours for no particular reason beyond a 19-lb cat snoring in my left ear at 2:00 a.m. (thanks, Duke). The pork loin and sauerkraut with onions, potatoes, applesauce and prunes is cooking away in the slow cooker, so we'll have our good luck meal at noon. I don't know that the pork and sauerkraut routine really works but I always have it just in case. (I'm not a fan of black-eyed peas so I don't think I'll try that one)

I had my last doctor's appointment for 2008 yesterday with Dr. SC at OSU. Bloodwork was good - slight elevation in creatinine level and blood calcium level; normal white blood count; slightly low red blood count and mean cell volume. Dr. SC was pretty pleased, said I looked good and commented that he has no other patients on such a low dose of Nexavar.

Maybe pork and sauerkraut does bring luck - I don't know how else to account for the continued positive results beyond magic, witchcraft, and the man behind the curtain. Maybe if I try black-eyed peas I'll win the lottery? (I should be so lucky!)

Holidays Gone By

2008-12-29T17:59:00.002-05:00

My ISP connection has been acting up; sorry for not posting recently. The error reports blame Windows; I am daunted by the prospect of tackling the fix. Maybe it's time to buy a Mac.

Anyway, a good time (and a quiet time) was had by all in a small gathering at friend and sister C2's house. We ate fairly sparingly, all things considered, and exchanged many silly presents. For our next holiday outing, we will attend a friend's wedding on New Year's Day (television on mute available for Bowl games after the ceremony).

I can't think of anything better to ask for.

Waiting for the Storm

2008-12-19T07:17:00.002-05:00

If you happen to be watching The Weather Channel right now (it's about 7:15 a.m. EDT) you can see a huge swatch of magenta squatting over the upper Midwest. That's the weather system outside my house right now. It's been raining steadily for about an hour and a half; it's cold enough for freezing rain. It's too dark to tell what's happening; Ohio may be a "swing state" when it comes to politics, but when it comes to The Weather Channel we're just a wide spot between interstates and New York and Chicago.

I've got stockpots full of water on the stove and the bathtub is full. I've got bread and milk and cheese in a cooler in the garage, and peanut butter and crackers inside (oh, and chocolate too, but that's always on hand). I've taken a shower. I've pulled out all of the batteries and flashlights and have them sitting out next to candles and matches. I've got blankets and radios close at hand. I dusted off the old phone so that I'll stay connected if the power goes out. (Most people don't know in advance that digital phones don't work then; and it's one reason why we've kept our land line).

There's plenty of cat food and litter, but Jezebel will have to rely on her hunting skills for the moment until I know for sure what's going on out there. My mom lived alone in the country for 16 years after my dad died; one of the reasons she moved to town was because she was afraid to go outside when the weather was bad, for fear she would fall in the driveway and nobody would find her until it was too late. I don't think I'm that nervous - yet - but still don't want to test the limits.

Metaphor for life in general? Waiting for the storm, hoping that we're as prepared as we can be, and hoping that we don't find out we're not ready for it ... who knows, it's too early in the morning to be "deep".

All I lack is Saint H, who stayed in Columbus last night to avoid getting caught out in this stuff. I hope he can get home tonight. In the meantime I'll curl up with cats and knitting and books, and see how long this lasts.

Lifetime Supply

2008-12-13T04:13:00.002-05:00

Friend and sister C2 and I have kidded each other for years: She'll take my lifetime supply of coconut if I'll take her lifetime supply of lima beans. Or I'll take her share of pears for my share of red wine. All in good fun, of course. But what if it isn't?

The British National Health Service has attempted to come to grips with drug costs for treatment of chronic disease as well as catastrophic illness with a payment formula. NICE [National Institute for Health and Clinical Excellence, a government agency] establishes a protocol for maximum payouts. As outlined in this article, the outcome can be dismaying. The process is illustrated by Bruce Hardy, a kidney cancer patient whose disease has progressed alarmingly since he was refused coverage for Sutent based on projected costs under the formula. The reasoning behind the decision: Sutent and similar drugs extend life only by an average of six months, according to the NICE deliberations, and the drug costs are extravagant based on these results: "But at that price [$54,000], Mr. Hardy's life is not worth prolonging ..."

I guess I don't know how to respond to the question, what is a life worth? What cost is "justified"? Since August 2005 I've received treatments totalling over $75,000 in insurance benefits for Sutent and Nexavar alone, disregarding other attendant drugs and prescriptions that I've taken to ease and control side effects of the medications or the disease. And my needs have been relatively modest compared to those who must take the full dose of Nexavar; had I been prescribed the full dose for the past 3 years, those insurance benefits would have skyrocketed to nearly $250,000, again just for Sutent and Nexavar.

Can we truly say that these drugs are effective "only" for six months on average? The drugs are fairly new, their effectiveness (less and less likely to be questioned) is still being tested, and happily the end stage results for their use keeps being pushed further and further out on the timeframe. Biologics are expensive, and no doubt there could be ways to reduce their costs. We seem to operate under a "whatever the market will bear" mentality and that free-wheeling free-market approach may well be inappropriate when people's lives are at stake. If one's life is extended and one is reasonably self-sufficient because of the medications, as I am, is the cost "worth" it?

I don't dispute that extraordinary measures are extravagances when applied to someone whose prognosis is poor and likely to remain so. I certainly don't expect extraordinary measures to be taken for me when the time comes; quality of life is uppermost in my mind, and I don't want to linger, insensate, when my disease progresses faster than any drug can control it. But I can't help thinking about Mr. Hardy: I was in his position in August 2005, I was given Sutent and Nexavar, and I've benefitted greatly from it. What kind of shape would he be in now, had he had the same chance? One positive note: given public outcry, there have been some modifications proposed to the NICE standard, so it's not written in stone - yet.

Who will decide what's best: Bean-counters? Physicians? Patients? This is a lifetime supply of conundrum that I'll gladly trade for something else. I don't think I'll get any takers, though.

Little Things Make Me Happy

2008-12-03T19:48:00.004-05:00

Tuesday morning I took the best shower I've had since we moved into this house. The master bath has a 5' shower enclosure, and the shower head was at least 7' off the ground - I could reach it, theoretically, by standing on my tiptoes, but who wants to do that in a shower? The spray was inadequate and messy, flinging all over the walls of the enclosure; all together an inefficient and unsatisfactory shower setup.

Saturday I finally located a shower head extender so that I could drop the shower head by about 15", with pivot points at the pipe and head so that it would be completely adjustable. When Saint H took off the old shower head to install the extender, we found out why it was so awful: The installers had broken the internal diffuser and, rather than replacing the stupid little plastic piece or bringing out a new shower head, the broken one went up. So I ordered my favorite low-pressure shower head, by Oxygenics (I'd been threatening to do so for a long time) - one for the master bath, one for the mudroom shower.

Monday night all the pieces came together, and I was thrilled with the results. I realized after the shower that I'd come to hate taking them under the old regime. Now - just keep me out of it! (No, it doesn't take much to please me)

Sunday was our 18th wedding anniversary. I've now lived with Saint H longer than I lived with my parents. I wouldn't have missed it for all the world -

How Low Can It Go?

2008-11-21T10:53:00.003-05:00

Oh, I know it can get colder than it is today, and that it will get colder before spring comes again. But there's an Alberta clipper brushing past, weak sunshine, and it feels more like January than November. Jezebel hasn't ventured out of the barn yet today; when I went out to feed her she came stretching out from the straw bale burrow, and looked to be headed back there immmediately after eating. Can't say that I blame her - my taste of "outside" was sufficient for the day.

Last week we went back to Cleveland, and all the results are now in. The radiology reports were mixed again for abdomen and pelvic, and stable for the chest. Dr. G believes that the "mixed" results are from necrosis of tumor tissue, which has a different density than active tumor tissue. There was no overall increase in disease state. I had a slight elevation in liver enzyme levels and my hemoglobin levels were below 11 for the first time in a long time. So we'll be keeping the usual watch on these indicators at OSU for the next couple of months, and I'll go back to Cleveland in another 3 months.

I wonder if my hemoglobin levels will pitch low enough that I'll need Aranesp again, or if we're just at another plateau? This will be the first time the question has come up for me in over a year. I haven't seen much in the news lately on insurance coverage for Aranesp. I don't want to find out that I'm not covered after the fact ... guess I'll get started looking in advance.

Moonlight Serenade

2008-11-19T07:31:00.002-05:00

Early this morning I woke with sinus congestion and a slight sense of unease. I headed to the kitchen for water and stopped in my tracks when a chorus of howling set off, seemingly under the kitchen window. Coyotes! Coyotes just outside the house, a blood-curdling reminder of the natural world. Saint H raced to the front door, turned on the outside lights, and stepped out onto the porch to see what was going on. The howling stopped immediately. We've no idea how close they were; I'll check for footprints later since we have a dusting of snow on the ground. Cola, poor child, had never heard them before; she looked even more than usual to be "all eyes and fur" as she ran to the basement.

With friend C's departure on Sunday, the house seems abnormally quiet - not that she was a disruptive presence, mind you. We've had guests off and on for the last 6 weeks and it seems odd not to have someone staying in the upstairs guestroom. I will gradually get used to having the house to myself again, probably just in time for someone else to arrive. Oh well, that's why we wanted extra bedrooms, and I'm glad that we have people who want to visit us.

Quiet Times

2008-11-07T17:11:00.003-05:00

Friend C and I have been spending lots of time doing little or nothing, besides sitting-talking-eating-knitting. We've been to one bookstore so far and will head to the glories of HalfPrice Books next week.

Tuesday we cruised through two local grocery stores so that she could pick up some of what she can't get in Australia unless she goes to USA Foods in Melbourne. I ship care packages to her, especially for Certo and SureJel during canning season or powdered drink mixes in summer. When she visited last I'm afraid I got her hooked on pumpkin butter from Cooper's; I'm sure I don't ship often enough.

There are yarn shops to go to as well next week. We've got to squeeze all this in somehow. Funny how quickly the time is flying by, just doing little or nothing!

Democracy In Action

2008-11-02T12:26:00.003-05:00

Friday I took friend C to Columbus so she could vote absentee-in-person; she's lived in Australia for 17 years but retained her citizenship, and this is the first time she's been here to vote. So we went to Veterans' Memorial where all of Franklin County absentee votes are to be cast and waited in line for 3-1/2 hours with thousands of people.

We stood next to a young lady of 32 who was voting for the first time in her life; she'd persuaded her mother, age 51, to vote for the first time in her life. The time passed pleasantly; both C and I brought knitting, and we saw others in line knitting. I heard no griping about the wait. Everyone was upbeat, and occasionally someone would come by with donuts or water to pass out to people in line.

I'd cast my own vote early in Marion, waiting 25 minutes on Thursday afternoon with phones ringing off the hook in the Board of Elections office. That was surprising enough; what I saw in Columbus was almost overwhelming. After all the years of annoyance about people not turning out to vote - wow, what to say. I'm glad to see it.

We've done a bit of running around but, as both of us have health concerns, we're not pushing it. Thankfully she's here long enough that we can catch up at our leisure! This week I think we're heading off to a couple of yarn shops, big surprise.

Silly Season

2008-10-29T11:14:00.003-04:00

Gail Collins laments that she's not getting attention from politicians because she's not in a battleground state. Oh, honey, would I trade places with you. We lucky Ohioans have now been subjected to nearly 2 years of ads, phone calls, mailings, leaflets, candidate visits, television coverage, "man-on-the-street" opinion taking, and on and on. I suppose when it all ends next week with the election, it will all start all over again November 6 for 2012. I'm thankful for caller ID - no phone call with "Out of area" gets answered here. And yes, indeed, we get calls all day, every day. I think the amount of money being thrown around here is appalling - what couldn't we do with that baksheesh if it were being applied to social services, or better roads and bridges, or simply giving everyone in town a dinner out? Sheesh.

I think I've finally shaken the cold/flu/sinus stuff - no more cement in my head, hooray, and very little nausea. It's debilitating and it's frustrating to be laid so low by something so simple. Do we count it a pleasure just to be alive so that we can fall ill to such unpleasantness? I can certainly say I've considered the alternative and found it lacking but jeez, it would be nice to go a month without having something minor turn into something major. Oh well, better to be recovering than not.

My friend C arrives sometime today for a couple of weeks. Let's hope her winter coat that was left behind on her travels appears here before too many days go by - we had a dusting of snow on Monday, not enough to consider a "snowfall" but enough to show up on the newly worked ground in the next field. The old wives' tale about number of snows corresponding to date of first measurable snowfall makes me hope we get it over with early in November or early in December. Brrrrr!!!!

Tall in the Saddle

2008-10-22T22:14:00.002-04:00

Now I understand the importance of "sitting tall in the saddle." Yes, Virginia, you can get saddle sores, and even little ones are unpleasant. Other than that I got home without incident on Saturday, unless you count my friend and sister M's broken rib from being thrown off on the trail ride, and my bout with some stomach flu that hit shortly after checking into our hotel Friday night on the way home ... At least now I'm mostly recovered from both ailments. And we haven't given up on riding; I think we'll take some more lessons and perhaps set our sights on driving lessons too.

While elderhosteling I was taken off Nexavar, just in case the additional physical activity led to problems with hand/foot. Nothing arose; we'll see if there's any difference in my scans in two weeks (I hope not).

Saint H is in Columbus tonight; we're continuing his one-night-weekly stay to save money on gas, and to save wear and tear on my sweetheart. I've decided that I'll have "movie night" here with the cats when he's away. Tonight we hunkered down with The Hunt for Red October, one of my favorite movies - I would guess that I've seen it 30 times but I always enjoy it. Duke was satisfied with popcorn (he's easy).

Spirit Willing, Flesh Weak

2008-10-15T13:43:00.003-04:00

I'm at the camp I never had as a kid: an Elderhostel in Abingdon, Virginia, learning the basics of horseback riding. So far we've covered grooming and tacking up and basic riding commands - I can walk, trot, and post, woo-hoo! Today we learned the basic barrel riding pattern, at a walk thank goodness. I was to go on a short trail ride this afternoon but was striken with nausea from heat and sinuses, and so am preparing to stretch out for the rest of the afternoon.

On the whole I've had a lot of fun and am looking forward to a half-day's trail ride tomorrow, but I'm annoyed that my body has given out on me. I wish I had done this twenty years ago, before cancer stripped me of my strength. On the bright side, though, I'd held up pretty well until this afternoon; I'm not hobbled and stiff. I know for certain that I'd not have been able to do this a year and a half ago, so am happy to have gotten this far with it.

I haven't decided if riding is really "me", but at least I know how and I can ride if I want to!

Come Back Anytime, Aunt J!

2008-10-02T21:55:00.005-04:00

Here you see the picture of contentment from Monday. My sister J visited last week. When she visits, the Dukester gets an inordinate amount of attention and brushing. J ended up with a box of carefully wrapped pottery from Peachblow Pottery. Duke certainly approved her choice of box ... needless to say he's missed both the attention and the box since she left here.

I spent a marathon reading session Saturday with Eleanor Clift's Two Weeks of Life. Clift chronicles the circumstances of her husband's death from RCC with that of Terri Schiavo, who died that same week. The contrast between a private, dignified death in hospice at home, and the media circus and nonsense surrounding Mrs. Schiavo's expiration, is compelling reading. It reinforced my hope to die at home, if at all possible, and strengthened my resolve to pursue hospice care when the time comes.

Lake Wobegon Days

2008-09-22T10:30:00.003-04:00

"It's been a quiet week here ..." - or multiple quiet weeks, rather. We keep waiting for the rain that's been promised and seems imminent, but so far have garnered only a little over an inch from all those hurricanes and fronts moving through. Given that my brother and sister both have had multiple rains with multiple inches involved during the same time period, I can't help but feel a little left out. We did escape the effects of Hurricane Ike's winds that devastated other parts of central Ohio and I'm grateful for that.

I'm beginning to see the familiar and detested signs of hand/foot rising again for the first time in months: little tingles in my feet; shiny, blasted-looking patches of skin on my thumb and great toe; itchy spots on my hands. A week's vacation from Nexavar will be beneficial; I'm just not sure when to start. It's a fine balance to strike - not to let it go too long, as the resulting sores on my great toe take a relatively long time to heal up, yet not stopping the dose too soon or too long, should anything else arise. I'm not good at second-guessing myself so will check with Dr. G.

Our favorite contractor Jerry has been working on the barn. We now have a storage area, and have installed vents, windows and translucent roof panels to lighten up the interior. The last tasks are addition of guttering and a tank for water collection; I've plans to get some solar-powered lights for the interior, and then we should just have to add horses and stir. Sounds good to me.

Numbers Game

2008-09-07T11:29:00.005-04:00

Last week at our renal cell support group, we heard from Dr. David Sharp, an oncologic surgeon specializing in renal cell carcinoma, and specifically robotic surgery for tumor removal. He looks like he is 12 but has been in the business at least that long ... At any rate he quoted the most recent statistical estimates for renal cell: 2008, expected case discoveries, 54,000. 2008, expected deaths, 13,000. Mind you, when I started on this journey in 2000 the annual expected case rate was 38,000 and the expected death rate was 12,000. So in a few short years the reported incidence has increased by roughly 30%, and reported deaths have increased by about 8.3%. What's interesting about RCC is that it's generally an "incidental finding", that is, one goes to one's physician for something else and RCC is identified through nonspecific tests. It often shows up in CT scans for back pain, for example.

Discovered tumors also tend to be smaller than eight years ago, and the rate of partial nephrectomies has gone up as a result. Partial nephrectomies certainly lead to a better post-operative experience for the patient. Do I think that RCC is increasing in the population on its own? I'm not certain - I suspect that given better diagnostic tools, we may just be finding it more often, and earlier. The relatively lower increase in death rate I think can almost certainly point to better treatment options. It's a cliche, of course, but I think "living proof" applies here.

This beautiful piece of abstract art arrived at our house yesterday. It's an untitled work; perhaps it should be called

CAUTION: Remove hat before placing head under mower.

Saint H's beloved beat-up straw hat was knocked from his head by a low tree branch while he was mowing the lane yesterday. We suspect duct tape will fix it right up.

Pick-Up Lines

2008-08-29T10:19:00.003-04:00

I guess I'm old-fashioned; I like going to the pharmacy to pick up my prescriptions. I use two local pharmacies; I have favorite clerks at each one. They know who I am, and I guess that's flattering - or it's reflective of the number of prescriptions I've had filled in the last 8 years. Having grown up in the country, where we generally only went to the grocery on Saturdays, I find it useful to have an occasional excuse to go into town when I might not otherwise be going. It doesn't hurt either that the pastry shop is on the same street as both pharmacies.

My Nexavar comes by mail through my insurance company. Every month I get a call reminding me that I need to refill it, and they carefully schedule the delivery. I find that rather amusing on two counts: I'm usually home during the day so I'm not likely to miss it; and FedEx doesn't come to the door to deliver it to me. At least they do drive down that long lane and drop it off at the house, rather than leaving it at the mailbox.

If I chose to go to another pharmacy I would pay full price for Nexavar, and that would empty the coffers pretty quickly. The drug is expensive, though not the most expensive one on the market these days. There's probably a price break (hmmm, Nexavar in bulk? - scary thought; I wonder how many of their customers need Nexavar) and, by requiring that I get it through their specialty pharmacy, the insurance company is able to realize that price break on all the absorbed costs. I certainly won't complain about getting this drug on a co-pay when it could brook total financial disaster otherwise.

My local pharmacies don't have Nexavar on their purchase lists, or at least they didn't when I started my prescription in 2006. It would be a hassle for them to get it just for me, aside from the cost that would be passed on. On the whole this arrangement works well.

We're hoping for rain but the weather isn't cooperating; maybe tonight, maybe sometime next week. I'd sure like to get another cutting of hay off but we need rain for that to happen. In the meantime we're planning to complete the hoop structure, cut brush in the woods, and squeeze in a picnic over the holiday weekend. Happy (and safe) Labor Day to all!

Time Off For Bad Behavior

2008-08-21T17:42:00.004-04:00

I went off on the quasi-annual girls' pilgrimmage to the Michigan Fiber Festival in Allegan MI over the weekend. After complaining about finances in my last post, I suppose I should be ashamed that I went in the first place, and that I spent any money at all beyond room and board. But I'm not ashamed enough to stop going, or to stop buying fiber for that matter.

I buy from small businesses and individual vendors, and most of what I purchase gets made into gifts for other people - so is that justification enough? Maybe, maybe not. But at least I'm not drinking, or using drugs (beyond prescribed medications, that is!) Maybe fiber is a drug, though; I certainly think I'm addicted beyond redemption.

Whatever - it's good to be home!

It's the Stupid Economy

2008-08-13T10:46:00.005-04:00

Starting next week Saint H begins spending one night a week in Columbus with friend and sister C2, to cut down on commuting costs. If need be, as time goes on, he'll spend more nights there. Fortunately she's a darned good friend - mine for 22, almost 23 years now, his for 37 years. He can potter around in her lovely backyard garden, or help with chores, or sit and vegetate while he's there.

I have been urging him to do this for a while now, but the dollar signs have become bigger than his objections. We're not going to starve, and hopefully we won't go bankrupt, but given the large number of unknowns in our finances (how much is gas going to cost? What about LP gas for heating? What do we hold back for medical emergencies?) we have to economize. This was an easy decision, but unfortunately there aren't that many "options" in the budget. We'll get by unless the entire economy tanks, in which case there will be a lot more worries to bedevil us.

Every time I hear someone talking about "those on a fixed income", implying seniors and retirees, I almost have to laugh. Aren't we all on a "fixed income", for better or worse, if we're on salary? Who has the freedom of economic security these days?

I figure that I've lost about $150,000 in salary alone, disregarding benefits or raises or other "perks", since my illness became more demanding in 2004 with surgery and subsequent retirement. I haven't been able to contribute to my retirement accounts for 4 years. Maybe I wouldn't have used that money wisely, but I'd sure like to have had the chance. This stupid disease has robbed me of my health and my comfort, as well as my security. I hate renal cell carcinoma!

Thanks, Bro

2008-08-11T16:05:00.004-04:00

Two summers ago my brother and sister-in-law came to visit. He brought me a surprise, a copper trellis he'd made himself (who knew?) The trellis sits this year at the north end of the porch distracting our view from the railings-from-hell that won't take a paint finish. Our hummingbird feeder hangs from the porch soffit just above it. And this year's crop of hummers have decided that the trellis is the perfect place to rest between feedings. It's a great view out of the dining room window, for sure.

Yesterday we decided to start putting together a commercial hoop shelter for all the farm equipment. Some starts and stops (I read instructions, he doesn't; and sometimes the instructions aren't very helpful and/or are downright misleading); then we got to the part that said "Lean the end rail against something permanent, such as a fence or tree, that is close to where the building will go." Friends, we have no fences. We have no trees. We finally pulled up the old S-10 pickup and used that to "lean" against. Himself is going off to Menard's tonight to buy an articulated ladder so we can get the cover on when the structure is done. Friend and sister C2 said, "Why doesn't he just stop by on the way home from work and get mine?" But who am I to stand between him and ladder lust?

All I know is, kneeling and bending to bolt together all those pieces of tubular steel made me feel every minute of my age, and maybe even older than that. It's a different type of ache than the usual - there's a mild glow of satisfaction to it, that at least I did something to get this way ...

Sympatico

2008-08-10T11:04:00.003-04:00

Yesterday I was pottering around in the kitchen; Saint H was outside swapping the mower for the hayrake on the tractor. For no known reason I decided, "I need to go see if he needs any help", grabbed a pair of gloves and wandered outside. I found him sitting in Emma's shed, abnormally quiet and pale. I asked, "Do you need any help?" He responded, "Yes. I just dropped the mower on my foot."

This isn't the first time something like this has happened. How did I know he needed me? How does he always know when I'm not feeling well? For that matter, how does he always know when and where to look up in the sky to see hawks flying, even when they're somewhere behind him?

If there's such a thing as sharing a wavelength, I suppose we do; we've lived together now for 19 years. Yes, we do complete each other's sentences. I'm not sure that the raptors and accipiters feel it too; maybe they look down when they're overhead and say, "See, there's that guy again. Funny how we always catch a glimpse of him when we fly over this way."

I'm glad to say that, short of a nasty bruise and some stiffness, there doesn't seem to be any major damage. Thank goodness for steel-toed boots.

The Latest Round

2008-08-07T10:30:00.004-04:00

Yesterday found us in Cleveland for the next round of appointments. Once again, labwork was good; scans were stable. Lesions in the liver appear to be stable; the lesion in the right lung continues to increase in volume but not in size. I wish I knew more about the mechanisms of tumor growth so that I can understand better what this means. At this point I know that Dr. G is not concerned about it, so we're staying with the current regimen of Nexavar and attendant medications. Dr. G is pleased enough, in fact, that I'm not scheduled for the next set of scans until November! I've been on a 2-month schedule since January 2006, when I started on Nexavar. Somehow it feels like a "great leap forward".

I worked with a new nurse for the C/T who asked, "Have you had a C/T scan before?" When I stopped giggling, I started mentally adding up how many scans I've had since 2000. By my estimation I've had at least 46, and there are probably more that I don't remember that took place in hospital or under emergency conditions. I'd like to say, "That should be enough for anyone" but I know I'll have to keep up with them for the rest of my life. Hmm, 2 450-ml bottles of Redi-Cat barium sulfate solution for each test - translate that into gallons and that's enough to kill my appetite permanently.

Saint H spent part of last weekend mowing and raking the last of the hay, and our buddy Rex arrived Monday night to bale it. He finished up about half an hour before storms hit; talk about making hay while the sun shines! We ended up with just short of 11 tons of hay - not bad for the first effort. We should get at least one more cutting off before the season's over.

Not for the Faint-Hearted

2008-08-01T16:10:00.003-04:00

Occasionally I have the chance to take care of Saint H, rather than the other way around. Yesterday was one of those times. He's had plenty of dental problems over the years, and one tooth in particular has had its share - 2 root canals and a crown in the past. Not long ago that tooth sparked up again; X-rays showed infection in the bone, requiring an apicoectomy, or "root end resection," or "endodontic microsurgery." Whatever one calls it, it's not all that uncommon. It's also a rather extensive procedure; he was in the chair for 90 minutes. He emerged with fat lip and bruised cheek and four prescriptions.

While on the way to the pharmacy, he asked casually, "Did you hear the commotion while I was back there?" I'd heard voices coming from the back and there'd been some bustling about, but it's a busy office and I was knitting so hadn't paid much attention. Turns out the procedure is also rather gruesome; the endodontist had a trainee technician who'd never assisted at one before. When he started removing bone, she fainted.

I guess I've never thought much about how one confronts medical procedures, except as a patient. We're lucky, in some ways; only rarely are we not medicated or sedated or otherwise treated so that the full impact is mitigated. Plus, we don't have to see what's going on most of the time. As Judy, the regular tech, told Saint H, "If she really wants to do this job, she's going to have to get used to it." Is it more bearable for the assistant to know that the procedure will, in the long run, probably make the patient feel better? I suppose that would be the saving grace for me.

We're In Our "Hayday"

2008-07-21T16:41:00.005-04:00

Last week I saw Dr. SC for the usual blood tests and office visit. There has been little to talk about at these sessions lately; my test results have been stable and we've had no reason to consider making changes to any meds or routines. At Dr. G's and Dr. MC's request we added complete thyroid tests, still trying to determine what caused my bloating/discomfort/fatigue in spring. The tests indicate an elevated T4 level (12.8; normal is 4.5 to 11.2). So now I'm a bit confused: I'm being treated for hypothyroidism, yet the elevated T4 may indicate hyperthyroidism. Oh well, that's why they're doctors and I'm not - I'll let them figure it out. I'm sure the topic will come up at the next scheduled appointment with Dr. G.

We literally sweated out our first partial crop of hay last Saturday. The weather cooperated beautifully: long, cool, wet spring and early summer resulting in lush growth, followed by a clear string of 4 hot, dry days. The dry spell coincided with a friend's availability both for equipment and expertise, so after a day of mowing and a day of raking, he and Saint H brought in our first half-crop of bales with 4 hours of concerted labor on Saturday. I kept busy supplying the drinks and food. The bales smell fabulously green and sweet, a treat I've yet to tire of. While the baler was making its last round we scared up a fawn that had bedded down in the north edge of the pasture. We'll be leaving a strip unmowed so that the deer continue to have some cover. With luck and continued good weather we'll be able to get the rest of the hay in this week.

I'm playing with a new camera, a Canon Powershot SD1000 Digital Elph. I'm quite pleased with the images I'm getting - the camera makes me look like I know what I'm doing! I "captured" this dragonfly resting on the sweet flag we planted at the edge of our pond. Male common whitetail, anyone?

I'm So Stimulated

2008-06-29T12:44:00.006-04:00

Gosh, what did you buy with your economic stimulus check? We came up with all sorts of plans for ours: fencing, gates, plants, tires, toilets - you name it, it probably made our list at one point or another. But I guess I'd say part of it, at least, is in my mouth as I write this. I spent two hours in the dentist's chair on Thursday and now have two temporary crowns in place. The real crowns, along with the final bill, come week after next. I think that appointment will only be an hour, oh boy.

Why is it that, when one is provided with unexpected cash, one ends up spending it? We had really intended to put the check in the bank (so we could pay it out again next year, most likely). And why is it that, once the check arrives, one manages to spend more than its face value?

In the end perhaps some other stash of money in savings will represent the "economic stimulus" sum. Needless to say we'll be spending more money regardless.

We went to the basement yesterday afternoon, when this parked itself over our house and the tornado sirens started going off. Fortunately it all blew over, leaving behind only an inch of rain or so, but it was scary while it lasted. I've always enjoyed thunderstorms - used to sit on the front porch swing in the midst of duck-drowners as a kid - but am terrified of tornadoes. These clouds were boiling and rotating. The urge to be outside, though, was almost overpowering. Yeah, I know it's not smart to stand outside taking pictures of storm clouds, but the skies were mesmerizing. We had to force ourselves to go inside.

Bite-Swear-Repeat

2008-06-20T14:08:00.003-04:00

I'm enduring, with little grace, a nagging toothache. It started Wednesday evening and my dentist, bless him, was able to squeeze me in late Thursday morning. In general it's the whole of my right upper jaw, and we weren't able to isolate the source, but x-ray and camera shots clearly identify the cause. I have a 33-year-old crown from which the gum has gradually receded (about 1/8", ouch), and a small spot of decay has formed on the exposed root. I can hang on until next Thursday, when Dr K could fit me into the schedule for a 2-hour session, with Ora-jel and by staying away from ice-cold drinks and food. Does that mean no ice cream? Perish the thought - I'll let it melt before I eat it!

Uncomfortable it may be, but at least my great fear of osteonecrosis wasn't proved. I slept very little Wednesday night, not from pain but from worry. I am grateful that it's just aging dental work.

As an aside - Dr K loves gadgets and uses an intraoral dental camera like this to take those lovely closeups. Smile ...!

Same Old Same Old

2008-06-05T10:58:00.004-04:00

(I hate to tempt the fates by using that for an entry title.) Yesterday we went to Cleveland Clinic for the usual scans, labwork and appointment. Dr G met us with his usual hugs and handshakes and a beaming smile. "Your scans show the same old thing - a little bit of growth in the lung, stable in the abdomen. No sign of ascites. We'll stay on the current medications, no changes."

We were stunned - how could this be? Suspicion now turns to my thyroid, and we'll look for test results on that either today or tomorrow. If thyroid, increase Levothyroxine. If not thyroid, then what? A fluke? A cosmic joke? Whatever, I'll take it. I'm keeping the remainder of the diuretic prescription just in case - it certainly seemed to relieve the symptoms regardless of what caused the problem.

We drove home, indulging in a rare squabble on the way - seems that we were both keyed up over the potential diagnosis, and sandbagged by the results, leaving us both feeling adrift. Emotions boil over quickly in such situations. I don't think either one of us was aware of how edgy we were until the pressure was relieved. Thank goodness we can both say "I'm sorry" and relish a hug and a good cry when it's all over.

Vocabulary Lesson

2008-05-31T16:00:00.004-04:00

If nothing else, I know that to be physically challenged by an uncommon disease is also to be mentally challenged to learn more. I've learned about RCC; I've learned about the structure of medicine in this country; I've learned about clinical trials and drug discoveries; I've learned about my own limits and how to make compromises between "want to do" and "able to do". Along the way I've discovered a whole new vocabulary. Sometimes I pursue new words out of curiosity. Increasingly, though, I find that I am doing research out of necessity.

This week I learned a new word: ascites. In clinical terms, it's a buildup of fluid in the peritoneal cavity caused by the liver's inability to process wastes. In more approachable terms, courtesy of Dr SC's lead nurse Kelly, "Think of the liver as a garbage disposal. Ascites is what backs up when the system's clogged."

I learned this one because it appears that I've developed it. We won't know for certain until I've undergone my usual round of scans this coming Wednesday, but I've got the classic symptoms: distended abdomen, feeling of fullness, loss of appetite, constant low backache, general fatigue. What makes this fatigue different from my normal level, you may ask? It's hard to explain, but I feel heavy, lethargic, and always uncomfortable. It could be worse; Kelly described the backache as "pregnant back" - I figure she should know, as she has twins. The backache is accompanied by gross distension of the belly, sometimes approaching "full-term" size. I've never been pregnant myself, so I can only distantly appreciate what every mother goes through.

I'm on a diuretic and have doubled my dose of Dilaudid. So far, after only two doses of the diuretic, my abdomen has deflated, my appetite has returned, and my backache has receded. Last night I slept the night through and I feel more energetic today than I have for a week.

When I encounter a new word these days, I think of "The Secret Word" on Pee-Wee's Playhouse. "Scream real loud!!" What a way to learn!

Slow down!

2008-05-28T09:49:00.002-04:00

I've been volunteering with a local adult education program for about 18 months now. We just finished our spring offering of classes, we've sent the fall brochure text off to be prepped for printing, and we're starting to plan next spring's classes.

I can come up with lots of ideas for classes; that's one of the benefits of volunteering, as things I want to learn about are included in the program. I also get a chance to teach knitting classes (thereby exposing more people to my mania).

I'm pleased by the program's success and I'm glad that I can contribute to it without jeopardizing my health. But sometimes it seems like it's become a year-round task; I'm glad that we're taking the month of July "off" from official duties.

Saint H and I celebrated Memorial Day by going out for a drive to the western part of the county. There's a sizeable Amish community out there, so there are lots of hayfields and pastures. Where there are pastures, there are grassland birds and, if the pastures are large enough, there might be bobolinks. We did, indeed, spot a few in one pasture where we've seen them for over a decade now. What a comfort that they come back!

Passing Milestones

2008-05-18T15:44:00.003-04:00

Wednesday was sort of a special day - on May 14, 2003, I had a doctor's appointment. Dr. MC told me that there was something "smudgy" and difficult to decipher on my last C/T scan; what did we want to do? At that time we decided to wait and see for the next scan results, and at that time I was only getting scans every six months. That next scan in fact identified a lesion in my liver that led to my Stage 4 diagnosis, then to my liver resection, the subsequent spread, my involvement with treatments, retirement and clinical trials. But - though the last five years haven't been a bed of roses, I've had those five years, and not many other renal cell patients can say that. Statistically I'm way ahead of the game. I'm thankful for every new day, and surprised by how much has happened since that day five years ago. Would it have made any difference, had we scanned more frequently then? I don't think so - I was in the grip of aggressive disease, and suspect it would be just so now, were I not on Nexavar.

I'm very happy to have lived to see our beautiful niece Candy get married Friday, May 16. "Uncle" danced with the girl he has always looked on almost as a daughter, and we danced together too. I made it through slow dances and even some of the goofy "wedding group dances" that are always played; a good time was had by all. Good times, good tears. Some things are just worth living for.

Get Hep

2008-05-05T17:52:00.002-04:00

I've been watching the unfolding drama: tainted drug supplies, multiple deaths, international fingerpointing, lax inspection. At the very least the furor over Heparin manufacture in the last few months has outlined a disturbing trend. Heparin is a life-saving drug that figures into treatments for dialysis (and, like me, for patients with Mediports) every day. If something is that vital to survival for people whose health is already compromised, why isn't more done to control its manufacture and its safety? I must say that finding out where Heparin comes from, pig intestines, isn't disturbing in any way to me; lots of valuable medicines come from animals. Finding out how Heparin is processed, again, might not be of concern; good for those enterprising Chinese families who make the effort to provide the raw material. Finding out that the supply chain is so limited gives one pause - why do we have only two manufacturers in this country? Finding out how few checks and balances are in place is frightening. Finding out how little the FDA can do to perform the necessary inspections is infuriating. I think it will be interesting to see what happens next.

Yesterday Saint H and I put up the martin gourds for this season; keep your fingers crossed that this will be the year for our colony to start. We have 16 tree swallow eggs and 4 bluebird eggs in the nest boxes here. We walked through the woods, finding blue and yellow violets, May apples, Solomon seal, and bellflowers (as well as poison ivy, Virginia creeper, and garlic mustard). Much to my surprise, about 50 trees have survived years of standing water in the south field - they're not big, but they look pretty robust. I wish I had the stamina and determination that plants show!

From Beyond The Grave

2008-04-22T17:19:00.003-04:00

No, not my own! I've been quiet recently as not much has been happening, other than the arrival - at last - of spring. We're hosting several pairs of tree swallows and a pair of bluebirds, plus have recently been seeing flickers in the yard below the feeders (get those ants! Get 'em! Get 'em!)

I'm writing in complete and utter frustration. It seems that my ex-husband, who committed suicide last fall, left behind more than sadness and regret. He also left behind unpaid debts. I'm now getting calls from collection agencies, eager to locate "beneficiaries." First, we separated acrimoniously in 1983. Do the math, that's twenty-five years ago. Second, we divorced in 1984. That's twenty-four years ago. Apart from an unpleasant post card I received shortly after we separated (he was sniping about some stuff he'd left behind when he moved out, like that was my fault) I hadn't exchanged a word with him since October, 1983. I heard about his death through friends of my brother's; I lost track of his family years ago.

I realize the economy is bad and debt collection is on the upswing; some of these companies are absolutely ruthless, from what I've heard. I can only guess that they've tried - and failed - to recover money from his widowed, invalid mother and his brother and sister. They'd best not think they can come after me. Give me a break.

Just when I thought the bastard was safely in his grave, he still has the power to make everyone associated with him miserable. I only hope that I can get these jerks off my tail.

One Thing Leads To Another

2008-04-11T13:33:00.003-04:00

Last week we trekked to Cleveland Clinic for the usual scans and appointments. This time there's no unqualified "stable" report, I'm sorry to say; rather, there was a tiny bit of growth in 3 lesions. It's not enough to force me off Nexavar, thank goodness, but it's the first that we've seen for over 2 years.

I'm always let in for a battery of standard labwork. Once in a while either Dr. G or Dr. SC will decide to follow one set of results with more investigation. I don't think it's from alarm on their part, but rather a desire to know more completely what's going on with me.

This time, Dr. G zeroed in on MCV (mean cell volume) - my levels indicate that my red blood cells are smaller than the norm. This could be from internal bleeding (on a microscopic level) or from anemia. My money's on anemia, given my history, but I'm undergoing a stool card test just to be sure. If those results are positive I suppose I'll have to go the endoscopy and colonoscopy route.

If negative, I suppose I'll be looking around for tools to boost my iron count. That remedy will be determined by finding something that doesn't interfere with absorption of other medications. Sometimes I feel like we're doing an enormous jigsaw puzzle without having the picture on the box for reference ...

I passed along the sweater I'd made for Dr. G's baby's first birthday. It's only 4 months late; I wasn't finished with it by her birthday, and I forgot to take it to the January appointment. Fortunately I'm certain it's something she'll have to grow into anyway. I'm told that her favorite color is purple - mine too!

Port Complications

2008-04-02T05:58:00.005-04:00

Well, how did you celebrate March's exit? No matter what you did, I'll bet your celebrations were more festive than mine. I spent most of the day at OSU's Doan Hall bouncing from reception area to lab to waiting room to lab and back, undergoing the prescribed C/T and bone scans. It's been a long time since I've had a day devoted to tests - the process hasn't changed, but my usual routine of knitting and reading helped pass the time pleasantly.

Both tests involve a fair amount of sitting-around "quality time." For the C/T, of course, I have to swill my favorite beverage Redi-Cat before the scan. For the bone scan, a radioactive medium is administered 3 hours prior to the test so that it can be absorbed by the bones. Irregularities in the bones then show up as "hot spots", so I'm challenged to recite the catalog of breaks, fractures, and arthritis accurately (eek).

This time I found that my Mediport posed unexpected problems. OSU hospitals will no longer use a port when administering C/T contrast media (see this article for the story behind this decision). A different problem arises for the bone scan; when administered through a port, the medium tends to pool, and can produce a false positive - the last thing one wants.

I had the C/T scan without the contrast medium, and we compromised for the bone scan by using the port and taking additional exposures of the ribcage. I may be selfish, but I'm more than happy to spend that extra half hour in the scanner to avoid being poked to no avail.

We're off to Cleveland Clinic on Friday for the usual round of appointments. I'm curious to see if CCF also restricts using ports for C/T contrast. Inquiring minds, and all that ... stay tuned.

"Incurable Disease"

2008-03-17T13:30:00.005-04:00

Yes, both Saint H and I have fallen victim to an insidious disease: tractor sickness. You may recall that last year I found, and bought, a Ferguson disc and a 3-point post auger at an auction, for use with our beloved Emma. We went further, then, and joined Ferguson Enthusiasts of North America and dutifully read the "Ferguson Furrows" newsletter. We generally look at the articles and check the events schedule, realizing dimly that this illness is managed only by occasionally seeing other patients and the inoculant, the tractors themselves. The newest issue had a terrible effect on us: several Ferguson items for sale in Mansfield, Ohio, just a short drive away.

We called. We drove. We drooled. We wrote a check. We added a Ferguson side delivery hay rake, a Ferguson 2-bottom plow, a Ferguson cultivator, a Ferguson tractor jack, and a Ferguson belt pulley to the collection. As we drove home, Saint H said only, "I'm stunned to find all that in one place." Amazing to think that, once we get it home, it will all be in our place.

This is the type of illness I can enjoy!

A Boy and His Cat

2008-03-16T14:02:00.004-04:00

Well, we must be heading into spring at last. The snow is nearly melted, though we have a lake in the pasture for the moment. The bluebirds are courting, so Saint H spent this morning cleaning out the nest boxes. Jezebel merrily accompanied him on his rounds, making sure that he got everything done. I guess since we don't have a dog yet, she's happy to stand in. Next weekend we'll probably put the martin gourds back up - here's hoping this is the year they decide to move in.

Tomorrow I will call Dr. SC's office to schedule a C/T scan and a bone scan, on Dr. G's recommendation. I've been having intermittent twinges under the right side of my ribcage, rather like muscle spasms. These were occurring only when I bent into certain positions (putting on shoes, for one); in the past couple of weeks it's been a more general ache. When I finally made it to my appointment with Dr. SC last week, I mentioned this; his nurse suggested I might have a hernia along the track of the abscess that developed after my liver resection. Dr. G decided that I should have it checked out now, even though I'm due to see him in a couple of weeks. It's not terrible and it's probably nothing to worry about, but I'd much rather know what's going on than not. Oh well, I've already met my deductible for the year ...

Bright White

2008-03-09T17:47:00.004-04:00

Well, we've come through another storm, this time replete with 20" of snow and winds. This is our porch at 9:00 this morning, following Friday and Saturday snowstorms - good thing we weren't planning to go anywhere! The storm finally blew itself out about 5:00 yesterday afternoon, and we're expecting a little more snow overnight.

The snow brought flocks of snow buntings, horned larks, and juncos to our feeders. Cola spent two days parked in front of the living room window watching those yummy plump morsels bounding about in the snow. Now that the sun's out, the show's over. Saint H went out walking this morning; some drifts along the lane were up to his waist (he's 5'11".) He was able to break a path up and down the lane on the tractor, so the fellow who plowed us out had an easier time of it this year than last.

One winter, during my high school years, we had several bad storms that shut down our roads. One of our neighbors was then in the process of dying from advanced breast cancer. At the height of one fierce storm, Ann's condition worsened and she was evacuated to a hospital 20 miles away by snowmobile. Don't think that doesn't cross my mind when the weather rages now.

Snake Oil by Chanel

2008-03-03T14:06:00.006-05:00

Last week a well-meaning friend sent me a "Johns Hopkins Cancer Update". As the email requested, she sent it to everyone in her address book. It sounds good: a clear-cut enumerated list of statements about cancer that identifies what causes it, and states definitively how to combat it. The only problem is that it's not true - it's an urban legend, and never came from Johns Hopkins to start with.

My first thought was to just hit the delete button; then I thought, no, I'd better give a response because it's not good to spread this stuff further. Before I could do so, though, I got another message from her: One of her correspondents is a physician, who repudiated the content. My friend sent out a message to everyone apologizing and quoting his comments, "The information in the email is irresponsible and innacurate [sic] and may well cause harm or even death to those who choose to ignore appropriate medical advice. I do not suggest passing this email on to others."

Since my diagnosis, I've gotten lots of suggestions for cures and treatments from friends. Some constitute advice about dealing with side effects (fatigue, generally); others are claims for nutritional cures; still others advocate alternative medicines. Some of these suggestions are reasonable, sound advice, while others are way outside the fringes of reality.

There may be a grain of truth behind all of these suggestions, but I'm pretty skeptical. There are many distinct types of cancer, but most of the "cures" talk in general terms of "cancer" as if all cancer cells behave identically, and that what will work for one will work for another. Yet accepted wisdom says that renal cell almost never responds to radiation or standard chemotheraphy, so these methods of treatment are almost never tried. Likewise, every person responds differently to medications - I need look no further than myself for the truth behind that. What works for one person may not work for the next.

People want to believe that there's a solution to cancer, and that this solution can be codified and passed along to someone they care about. And it can be a great comfort to see a list, or a diet, or another scheme, headed up with a recognizable name - would you rather get advice from an unnamed source, or from, say, Mother Teresa?

I really have a problem with these indiscriminate, false attributions - as a former librarian, I know how to track things down and can evaluate sources pretty easily. But others may not know where to go to validate a statement, and sometimes taking these things on face value can be risky.

Perhaps Alan Alda puts it best, in his recent book Things I Overheard While Talking To Myself. He discusses the mythical but comforting "wear sunscreen" address supposedly delivered to MIT graduates by Kurt Vonnegut. Alda writes,

"It's a delightful piece of writing. But if it's presented as if it were by someone other than the person who wrote it, it steals that person's good name and gives a certain credibility before it has a chance to earn it honestly. So, as good as it is, it's a cheat. At least in the way it's offered to us."

I hope we can think critically about what's presented us in all arenas, but there's so much at stake in terms of one's health - it's doubly important to be careful.

Curses, Foiled Again

2008-02-28T11:43:00.003-05:00

So, Tuesday afternoon, in the midst of a blinding snow, I called my trusty friend John. When I gave my name, he asked if next week would be okay and laughed - I didn't even have to start the "look, I'm sorry" routine. I'm glad this is just a check-up and nothing life-threatening; I've been scheduling and re-scheduling since mid-January! Of course, were it life-threatening, I suspect I wouldn't be planning to drive myself down for the appointment. I trust that five attempts to get the appointment in will suffice!

Six or so new inches of snow blanket the ground now, since the snow from last week was rained off over the weekend. Another cycle is to move through this weekend; March threatens to come in like a lamb. Given the lions we've seen this winter I'm not sure I want to see what the end of March brings.

Cluck-Cluck

2008-02-20T11:10:00.002-05:00

Well, call me a big chicken. It's been snowing steadily all morning, the wind is rising, and I'm not willing to drive to Columbus in this weather. So I called my friend John in Dr. SC's office ("Honey, I wouldn't be out in this either if I didn't have to!") and rescheduled for next week. One of these days I'm actually going to get this appointment in!

Given that Saint H, intrepid traveler with 500 miles weekly to his credit, called to warn me that the roads were bad, I consider that I'm acting most prudently. I'm not used to driving in bad weather anymore, and would consider myself to be just another road hazard out there. I don't want to have gotten through all that I have on the health front, only to end up smashed on the roadside because I've been careless or stupid.

Besides, it's cold out there!!

Sit Down!

2008-02-19T22:38:00.002-05:00

Last week Saint H took a day off from work, combined that with the weekend, and spent 3 days in a class with master chairmaker Michael Herrel, who has done work with the This Old House crew in the past. Saint H has some work to do (fine shaping, finish sanding, and dyeing to bring out the grain of the poplar, maple, red oak and black walnut parts) but I'd say this is a pretty good result for 3 days' steady work.

Tomorrow I head to Columbus for a make-up appointment with Dr. SC at OSU. I had to cancel twice last month, once because of weather and once because of flu. When I called to reschedule, Dr. SC's scheduler John told me "I have a note here to call you. I'm to make certain that you are feeling okay, find out how you're faring on your present regimen, and see if we need to take a more active role in your care." He seemed pleased that I'm not at death's door (we always share some good laughs when I call). For myself, I'm very, very pleased to know that Dr. SC is keeping tabs on me. I haven't "needed" his services for well over a year but we still keep in touch, and he has always been interested in my care and well-being. Shouldn't all doctors be like that?

Same Time Next Year??

2008-02-12T16:26:00.000-05:00

A year ago today we were heading into a vast winter storm/blizzard; Saint H was snowed in in Columbus for 3 days and I had to hire someone to plow out our lane.

Late last night it started snowing here, and by this morning we had about 5" on the ground. Saint H left a bit early for Columbus, taking clothes with him and promising to stay over if the weather deteriorated. We got more snow here, and it's now sleeting. Needless to say Saint H is staying in Columbus, and I'm staying right here. Marmaduke has been plastered to my side today - I don't think he cares much for the damp cold.

I have fond childhood memories of weathering storms at Uncle Maurice and Aunt Ruby's (they had a wood-burning furnace) - sister, brother and 2 cousins packed into one room, adults in another room, playing cards and having a break from routine. It probably wasn't as much fun as I remember it now. A couple of years ago when we moved out here, I was almost afraid to think of staying here by myself in bad weather. Thankfully my health isn't an issue for now; I just have to hunker down with the obliging cat and wait out the storm. Having grown up with the possibility of being snowed in, there's always food in the house!

Resumed Nexavar on Friday; back to the old routine.

The Surgical Dilemma

2008-02-05T22:11:00.000-05:00

At my last appointment Dr. G raised the idea of surgery at some point in the future. What surgery would this be? Amongst the initiated, it's known as "tumor debulking", to remove manageable spots of active disease. It's generally undertaken only when the benefits outweigh the risks. And what risks might there be?

First, the risk of surgery itself: My last surgery in January 2004, a partial liver resection to remove the first liver metastasis, resulted in life-threatening abscesses and an 8-month recovery. My dear H was elevated to sainthood through tending me during that recovery, the first 4 months of which involved daily dressing changes on an infected incision. For "daily" you can read, for the first 3 months, thrice- or twice-daily dressing changes. And for dressing changes, you must understand that the process involved not just popping on a bandage, but cleaning an open wound and applying medications, all the while trying to maintain a sterile field around the wound. Caring for the abscesses necessitated my wearing a bag at my waist attached to an internal drain for 4 months. Between the infection and the abscesses I was hospitalized 4 times and could easily have died twice. When additional liver lesions showed up in October 2004, every surgeon and doctor in my coterie lined up to rule out surgery as an option. No matter my general health, even now, would I be prepared to face that kind of risk again? Maybe if my lesions weren't in my lungs and liver I'd feel less worried about the idea.

Second, the risk of "waking up the baby" (as Dr. G put it - clearly he has a young child!) That is, adding stress to one's system may provide just the opportunity needed for cancer to re-assert itself. Would that happen to me?

For now I think we're more than content to keep the current medications and routines in place. It ain't broke, and perhaps there's more to be learned from pushing Nexavar to its logical limits. As Dr. G pointed out, I'm clearly responding to and receiving benefit from the drug, no matter the dosage. I'd like to see how long I can stay at this level before it stops working for me.

Side note: Saturday I noted the beginnings of the return of hand/foot. So I'm off Nexavar until at least Thursday. It took six months this time.