Renal Cell Live!

Monday, September 13, 2010

New Next Steps

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.

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Saturday, September 11, 2010

The Buzz

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

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

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

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

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

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Thursday, September 09, 2010

Cretins and Salivations!

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

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

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

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

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Sunday, August 01, 2010

How Things Are Going

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

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

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

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

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

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Saturday, July 10, 2010

On Treatments and Loss

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

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

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

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

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Monday, July 05, 2010

Up In The Air

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

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

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

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

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Saturday, June 26, 2010

Next Step (Date Unknown)

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 ...

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