Renal Cell Live!

Tuesday, May 12, 2009


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 ...

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Tuesday, May 05, 2009

One Week Down

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.

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Sunday, May 03, 2009

Resolving a Morel Dilemma

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!

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Friday, May 01, 2009

Club Vampire

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.

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