Caregivers/Co-Survivors

Where would I be without my friends and family?

What I can never forget is that my friends and family live with this disease too - from literally saving my life in one case, to providing laughs and shoulders to cry on. I've got the best support group I can ask for, without asking.

Being diagnosed has given me a new appreciation for all those people in my life. I'm closer to my sister and brother than I was before. I hope I'm more patient and understanding because heaven knows they all are. We've all learned a lot about renal cell carcinoma, and in the process I think have learned a lot about ourselves. We are stronger than we thought.

My friend M faints when she sees blood and swears that she's "no good in a crisis", but she stayed by my side the day I almost died last December. My friend CD is half a world away but we talk and share our lives as if we were still living in the same town. My friend C2 gives me house space to be near my doctors whenever I need it, and advice and laughs and hugs anytime. And Monka - and Nant - and Anne - and C3 - and, and, and ...

Above all, there's Saint H, who used to be just plain H. A wonderful man in his own right, he battles through this with me every day. He makes it possible for me to go on.

So, where would I be without friends and family? It's a question I don't think I can answer, beyond saying that I don't think I'd be here at all. We are all survivors.

Testing, Testing - Part 2

As the patient, you are entitled to a copy of your medical records, including all test results. I discuss the tests with my doctor, but I also keep my copies in a file so I can refer back to them later.

Sometimes when I go back to look at the test results, it just looks like alphabet soup. Some of the tests have similar names and/or acronyms. If I'm not talking them over with my doctor at the time, I can feel like I'm in a medical maze. So I've found some sources that I use to make sense of those reports. You can search any or all of them for quality, reliable information.

MedLine Plus Encyclopedia

Harvard Medical School Family Health Guide to diagnostic tests

WebMD A-to-Z Health Guide to medical tests

Lab Tests Online (use the "Search" feature; easier than scrolling through their lists)

I go to the local podiatrist on Monday - is the sore spot on my left foot a blister, or is it hand/foot syndrome? Whatever it is, is sure hurts!

Birthday Redux

What, again?? But I feel like a second celebration is justified.

Six years ago yesterday morning I went to the emergency room, suffering from an unknown malady. Six years ago yesterday afternoon, I underwent hours of tests to confirm the preliminary diagnosis of renal cell carcinoma, made in the ER. Six years ago today I had my left kidney removed.

Strange as it sounds, I consider myself lucky. I realize every day how precious my friends and family are to me. Six years ago today I had my life handed to me on a platter. I don't intend to give it back anytime soon.

Life, the Universe, and Everything

Sometimes I'm a little slow on the uptake. Saturday night I was taking dishes out of the cabinet, thinking only of arranging food on the plates, when it struck me: When did I become a retired housewife?

The short answer is, January 10, 2005, when I left my beloved job to begin my high dose IL-2 treatments. I walked out of work one day and entered the hospital the next. But mentally I don't think the penny dropped until this weekend.

Beyond setting up retirement accounts and saving money, I hadn't planned realistically for life after retirement. I just knew that retirement would come in 2018 and that I had plenty of time to think about it. The daily routine would fall into place, and I would spend my time doing - well, I'm not sure what I thought I'd be doing. I figured we would both be retired and living on that long dreamed-of farm. It would just be like life-as-we-knew-it, except we wouldn't be working; certainly neither one of us would be facing major health crises immediately. Right?

I spent 28 mostly delightful years in the library profession and still think of myself as a librarian. I find that I'm passionate about cooking and knitting (and sometimes spinning). Laundry and housecleaning are still chores but a lot easier now that I have more time to do them. I guess the rest of the answer is, "After retirement, life happens." It sure beats the alternative.

I'm back on the half dose of Nexavar starting Friday - side effects started getting out of hand after 5 days at the higher dose. Oh well - one can't know unless one tries.

Testing, Testing - Part 1

Renal cell carcinoma is a puzzler. The cause is unknown. The symptoms are vague and don't seem to add up to anything, so it's hard to detect. For instance, my symptoms included:
- sudden spike in blood pressure
- fatigue
- sharp pain in the lower back and right side
- insomnia
My doctor at the time didn't add these up though I asked repeatedly; maybe I can forgive him those. What he didn't follow up on was a test result showing blood in the urine - that should have been checked, though he said the amount was "negligible." Doctors I've worked with since then have said any blood in the urine should be considered an indicator that something's wrong, somewhere.

Research is underway that may lead eventually to a simple blood test for kidney cancer. It's in early stages yet and the mechanisms of the test are complicated beyond my comprehension, but I'm glad to hear that it's more than a rumor in the community. Will it come in my lifetime? Probably not. But two new therapies have been developed and approved in my lifetime since diagnosis, so maybe that's not such a farfetched possibility.

I seem to be adjusting to the increased dosage with little more than the expected side effects - commensurately increased number of diarrhea episodes, increased fatigue. I'm making certain I have plenty of Immodium on hand; we'll see how things go.

Flying High

Sunday was a day full of unexpected pleasure. Saint H had expressed interest in seeing the WWII-era B-17 Liberty Belle that was visiting at the Delaware, OH Municipal Airport. So, we went down in the morning after breakfast. We took the walkthrough tour - I know I'm stiff and out-of-shape generally, but I can't imagine moving through the plane's interior in full gear. There are 14 B-17s in flyable condition now, and many are stationary exhibits at museums - only 2 or 3 make the circuits these days. The Liberty Belle is on the road almost every weekend.

We watched her take off for the 12:45 flight, then went off for lunch. After much discussion, we went back to the airport and booked seats on the 3:00 flight. It was fabulous! They leave the radio room roof open during flight when it's nice and, if you're tall enough (I'm not) you can stick your head outside the plane at 150 mph, 1200 ft above ground. We had free range through the plane during the flight - view from the nose is incredible. We probably spent money we shouldn't have, but the chance may never be there again. It's a living monument to the veterans who took so many risks during the war!

I'm feeling the same type of euphoria right now - we got back from Cleveland earlier today. Scans show no growth and stable disease - so I've been stable since June on a half-dose of Nexavar. Tomorrow I up the dosage from 400mg daily to 600mg daily, monitoring all the usual suspects for signs of side effects. If anything changes, I go back to the half-dose. Stable is good.

The Wandering Mind Falls Into Deep Waters

I don't know why my mind works this way. I take many prescriptions; I use the toilet; we have a septic system; the septic system leaches into an underground waterway. What happens to the drugs? Is this a thought process that normally occurs to people early on a Sunday morning??!

At least I know I'm not the only one wondering. Scientists in Germany have been studying this very question since the mid-90s at least, and there are research reports from the US as well. According to Science News, in some cases as much as 50% to 90% of a pharmaceutical substance can be excreted by the body. It appears that ozonation is effective against many pharmaceutical residues of the studied compounds and products, and that longer detention, denitrification, nanofiltration and reverse osmosis also produce beneficial results.

I don't know if there is ongoing research on this question; I suspect there is, but it takes a long time for research to get published. And is this question a priority for any of our national regulatory agencies? The FDA reduced manufacturer reporting requirements in July 1997, according to the Science News article cited above.

Instructions are posted for restroom use during chemotherapy, at the infusion center where I receive Aranesp and Zometa: sit down on the seat; stand up when finished, lower the lid; flush twice; continue this procedure for two days following chemo administration. What happens with chemotherapy residues? Is anyone researching the effluent life cycle of the new, targeted therapies such as Nexavar and Sutent?

According to the German study, the most difficult residues to treat are iodinated x-ray contrast media. Every time I have a C/T scan with contrast, the final word from the attending nurse is "be sure to drink more water than normal so you can flush that from your kidney." But what will flush it from our environment?

The Reading Nook

I have always kept books in the bathroom. Now I have a set of shelves in the bathroom; I make numerous trips there daily due to my medications, and figure I might as well use my time wisely :^)

So, aside from the Harry Potter books and some favorite mysteries by Dorothy Sayers and Josephine Tey, what's in the bathroom with me? Often there's a stack of library books. And, since we just moved all of our "spare" books from the old house, I'm finding oldies to re-read. Right now, it's the Richmond Lattimore translation of Homer's Odyssey.

There's an added benefit to bathroom reading - I can read poetry aloud to myself, stumble on (or over) pronunciations, be overly dramatic and ridiculous, and nobody else can hear me. The cats are the exception, of course, but I doubt they'd tell on me. I'm enjoying the chance to rediscover my collection. What better thing to do when I'm a captive audience of one, so to speak?

Cool and decidedly fall-like here this weekend; the sweaters are out again. Early this morning the sky was crystal clear and the stars were so bright I could see the brightest ones without my glasses. I enjoyed being warm for a while but I am willing to trade that for fall - one can always put on more layers, after all.

Why Dilaudid?

I'm not a fan of opiates - I like being rational and in control of myself, my mind and my reactions. There are times, though, that pain interrupts life - not regularly, and not too shatteringly, but often enough and subtly enough that it cannot be ignored. So I have a prescription for hydromorphone or generic Dilaudid, 4 mg tablets. Why am I taking an opiate?

Ibuprofen is hard on the kidneys. Acetaminophen is hard on the liver. Aspirin interferes with clotting. With one kidney, a compromised liver and a history of internal bleeding, I don't have recourse to over-the-counter painkillers.

I take hydromorphone when I find myself aching head to foot, tired and miserable. I take it perhaps twice or three times a week - one tablet only, just enough to take the edge off and relax my body. Otherwise I can't sleep and the misery will spiral into something worse. I suspect that later, as my disease progresses, I will have a harder time controlling pain, but now I'm content to take a single pill once in a while for quick relief.