Payback is a ...

(I don't need to finish that, do I?) So much for confident words about being able to scale mountains and move boxes all day, huh. I've spent much of this week feeling like I've been run over by a truck - tired, achy, and unfortunately very cranky. A week of moving boxes in hot weather, performed by someone who's been fairly inactive for 18 months, doesn't add up to stamina does it?

I'm under orders from Saint H to "nap and knit" today and I'm trying to comply. This week has been pretty quiet except for the work going on outside - we've finally gotten work scheduled on drainage around the house, by our favorite contractor Jerry. (That puts me in mind of my cousin Judy who always beamed when my dad would refer to her as "my favorite niece," until she figured out she was his only niece ...) It's raining today so Jerry's not here. And I keep thinking of those boxes in the basement to be gone through - but I promised to take it easy today, and so I will. I think I have a very wide streak of indolence in me anyway.

So maybe I'll finish the lace edging on a scarf, or work on yet another pair of socks. Or maybe I'll nap. I am annoyed by how quickly my activities can be curtailed when I run out of energy, but it's a fact of life and I should just get used to it.

Lies, damned lies, and statistics - Part II

When I was diagnosed in 2000, there was only one FDA-approved treatment for kidney cancer, high dose interleukin-2. In action, the patient's immune system is destroyed and rebuilt, on the theory that one's body will then be able to recognize and destroy cancer cells. It's a very toxic treatment, it requires hospitalization, and it's not terribly successful: about 20% of patients who receive it show any benefit, and only 5-7% are placed in remission, though that remission is generally long-term (decades). Nevertheless, as the only approved option, it was routinely prescribed in hopes that the patient might be "one of the lucky ones."

A second immunotherapy, interferon-alpha, has also been used to treat renal cell carcinoma. One of my doctors has referred to it as "a drug looking for a symptom" - that is, in his opinion, it's widely used for anything with T-cell involvement, but has not yet provided a "knockout blow" to anything. It is FDA-approved for use against hepatitis C.

In December 2005, the Bayer drug Nexavar was approved for use in kidney cancer, followed in January 2006 by the Pfizer drug Sutent. Both are biologics, and they are antiangiogenic. Tumors require enormous blood supplies and essentially create a vascular system for themselves through a process called angiogenesis. Antiangiogenic drugs fight this ability; tumors starved of blood supply die. (Antiangiogenic theory was developed by Dr. Judah Folkman. May his shadow never diminish.)

These and other developing drugs are known as targeted therapies. They work on the molecular level and target specific actions by the cancer cells. It's still too early to tell what these will lead to, but the results from clinical trials to date are overwhelmingly positive with recorded high levels of response rate or stable disease state. There will be more testing as time goes on - drugs in combination with each other, drugs in succession, drugs as first-line vs. second-line therapy options, etc.

I feel very lucky to have had multiple options open to me for treatment. I've tried them all and my options are probably still open should my Nexavar treatment course be unsuccessful.

Things you find while cleaning

Gosh, I thought I'd lost this picture. This is me, aged about 19 months, walking down the sidewalk in front of the family home. I'm wearing a diaper, my grandfather's bathrobe, and my Easter bonnet. The next photo (which I will not post!) shows me in full wail. Guess I wanted to be picked up. I had a great fondness for hats at an early age, clearly.

I rediscovered a dress that my mother made for her first dance date with my father, circa 1942; a cache of Folkwear patterns; my collection of irreverent buttons collected and worn at a former job (one of my favorites: "I've had fun before. This isn't it." I wore that while we cleaned.) Plus, in the words from every author's foreword, "too numerous to mention" - treasures, junk, memories, laughs.

It's 3:30 a.m., or so, here and I seem to be wide awake despite 5 mg Ambien. I don't like to take any more pills than necessary but Ambien and Dilaudid have been necessities this past week. But I'll manage through the day with a nap or two, and see if I can't sleep come bedtime, without the Ambien. If not, I'll take one - what's one more, when one is taking 16 pills daily anyway?

Ceremony of the Keys

It's been a long week spent fruitfully at the old house in town, sorting, boxing, pitching and moving. Friends Dick & Mary gave 3 days of hard labor to get this done; Friday we all cleaned like mad, and at 5:00 we turned over the keys to the new owners. I stood in the yard and bawled - not that I'm unhappy to be done, or unhappy that this nice couple will be getting their first home, but I did so love that house! However, I love this one too. Sentimental old fool, that's me. At least the memories are good ones.

Tomorrow is my 54th birthday. This time last year I felt so terrible that I was quietly convinced I wouldn't live to see this birthday. This time last year I looked so terrible that I suspect others thought so too.

Last year, I was too weak to push open the wooden restroom door at the local Applebee's; I would have to wait for someone to go in or come out. This year, not a problem. Last year when we moved, I had to sit in a chair and direct others. This year, while I couldn't tote and carry all day, I did my share. I can run up a flight of stairs now without stopping or wheezing. I can be busy all day without needing a nap. I can, in short, carry on a normal life, with only my normal amount of laziness intruding to slow me down.

Even if I don't make it to my 55th birthday, I look on the last 6 months of normalcy as the most wonderful gift I could ask for. Blind me with science any day, if this is the result!

Unhappy Anniversary

Twenty-three years ago today, my dad died of esophageal cancer. After he retired from farming, he'd taken a Toastmaster's class to get over his fear of public speaking. He'd been involved for years with soil conservation services, built ponds and wildlife preserves on the farms, and was becoming a familiar figure on the conservation lecture circuit, to the point of testifying on bills in the Indiana legislature.

Early in 1982 he and my mother drove to Phoenix for a soil conservation conference. He was ill all the way home with severe stomach pains and headaches - Mom drove and he slept. He saw his doctor when he got home and was referred to specialists in Lafayette, Indiana, the closest city. Diagnosis? Stomach and/or esophageal cancer.

It was devastating for all of us - we had no way of grappling with this. My sister and I lived away from home so I have no idea what kinds of support were offered by the hospital, the doctors, the nurses, and the community.

He spent a year on an experimental drug and did well; but he could take it only for a year. When that year was up he went into a shockingly rapid decline. He died on what would have been my grandfather's 101st birthday, July 18, 1983.

This weekend while clearing out files at the old house I found a letter from Mom, written in April 1982, the day they got the diagnosis. It still feels raw and painful and I cried when I read it. At the same time, though, I realize how very differently things are handled now. I don't like having the diagnosis I received, but supportive communities have developed magnificently since then. It's easier to hear "the big C" now, somehow ...

The Falling Hours

We write to remember and relearn. Each time we relearn we realize things aren't so bad, because we remember ... The human body and mind have wonderful tricks available to minimize trauma - shock, for instance, or memory loss.

During my recuperation from the first outing on high dose IL-2 (January 2005), I had a terrible time sleeping. I spent those waking hours reading catalogs, People magazine, decorating magazines, and cookbooks. I had rediscovered how to sleep before the second round, and completely forgot about my nocturnal reading. But memory was awakened during recuperation from round two, when I realized I was spending long waking hours reading catalogs, People magazine, decorating magazines, and cookbooks. I remembered the same process from a month earlier; then began to remember the flashes of light under my eyelids, the lips that suddenly felt too big for my face, the sudden tingling of my skin, and hands alive to movement that could only be felt, not seen.

Friends and family began to bring up forgotten things, funny things, frightening things. When had these things happened? I had no recollection of saying things like "Where's my Lasix?" when I really meant "I have to go to the bathroom." I don't know what they witnessed while I was under treatment.

One Friday night during round two saw my creatinine and BUN levels skyrocket, my blood pressure fluctuate, and my heartbeat plummet. I don't know what happened, I only know that my treatment was stopped then and there. I will never know what happened, what I looked like, or what the risks were. Saint H knew and lived through it with my wonderful friends and family, and the wonderful staff at the James. Nurses and PCAs stopped me in the hall the following Monday to say how much better I looked and how worried they had been, and how glad they were - I felt like a freak saying "Thank You" for what, I knew not.

But that's how memory works - we suppress the horrible things, and remember the good things. Friends and family can bring those memories alive to a small degree, but if your mind won't let you, you'll never have complete recall.

I often think of my favorite nurses and PCAs - do they think of their patients? I only hope that, if they remember me at all, they remember me as fondly as I remember them.

Stability

No matter what my friends think, Dr G says I'm stable ...

Yesterday's scans showed stable disease. I have no new lesions, one of the smaller tumors went from 2 cm to 1.5 cm in width, and now the 2 largest tumors contain necrotic tissue with a thin layer of active cancer cells at the margins.

Is tumor necrosis good? As with everything else there are at least two schools of thought on this: First, necrosis is good because the cancer cells are dead. Second, necrosis is bad because the active cancer cells will begin looking for new territory. Personally, I lean toward "necrosis is good." And with the advent of antiangiogenic drugs, perhaps the opportunities to move into new territory will be reduced. Who knows?

We're still weighing the idea of increasing my Nexavar dosage from half-dose to five-eighths. Dr G would like to have seen more shrinkage, of course, but he was happy with stable disease status. We'll see in September how things are going on the half-dose, and may at that time move up. The hard part is to balance benefits with side effects. Right now I have so few side effects that it's not hard to think of increasing the dosage, but once side effects start kicking in it's more critical to see benefit to offset the discomfort.

For now, though, stability is good!

Off to see the wizard

Tomorrow will be spent in Cleveland at Cleveland Clinic. I'm scheduled for bloodwork, scans, and appointments with Dr G and nurse Shari. I'm grateful that we can get an interpretation of the scans while we're there.

When taking Sutent I had approximately 24% shrinkage of my tumors, and this on only partial doses between September and December; too bad about the almost-dying-of-internal-bleeding part, huh. On Nexavar, the results have been steady if not quite so spectacular; 15% and 10% shrinkage on the two scans so far. At least now I'm up to and tolerating well the half-dose of the medication, and we'll see if that makes any difference. Perhaps this scan will show whether or not the largest tumor is necrotic, as Dr G suspects.

Clinical researchers have an interesting view of shrinkage: it has to measure at 30% for most of them to feel that things are going the way they should. Dr G is happy to see shrinkage in any degree. I love his attitude - he says "I don't treat kidney cancer, I treat patients who happen to have kidney cancer." From all I've heard, that isn't the normal view of things for most of these guys! I've been very fortunate to have doctors with an overtly "patients first" attitude; not sure I could stand anything else. And I don't know that doctors with other views would stand having me for a patient, so I guess we're all even. (Note to self: how much continued progress can be made when measured in percentages of something? Is it to total reduction, or only to the point that nothing can be measured further? And that may be one and the same thing ...)

Ohio is providing its very worst summer weather now - hot, humid, hazy, rainy. I think it's too early for this; but we lucked out with June so I guess I won't complain too much.

False alarms?

I'm back home after two lovely days in Columbus - more time spent in waiting rooms, as usual. I had the fluoroscopy on my mediports yesterday and the results were good - no blockages, no unexpected problems. The best part of the process: there was a doctor interning on the procedure, so the radiologist explained step-by-step what was being done, much to my benefit. There was a display scope placed such that, even without my glasses, I could see what was going on. That was great! I'm relieved to have the ports declared "ready for action" again; thought is that I've strained a muscle and that's what's causing the discomfort.

Today, bloodwork at the James Kenny Road facility - as expected, my hemoglobin level flunked, and I got an Aranesp injection. At least I got only half the usual dose; I'm not maintaining the "normal" level but my level isn't dropping as fast as it used to.

As we had the Renal Cell Networking Group meeting Wednesday night, I actually went down Wednesday afternoon. To save driving (read: exhaustion) I had two lovely nights at buddy C2's "Napping Emporium" - cats at the ready, my home away from home. More on the RCNG meeting to come - still digesting my notes. Marmaduke and Maggie are happy to see me and I'm happy to be home again.

Aches and pains

Happy 4th of July - I hope that all your fireworks have been bright and safe!

I've been troubled the last few days with sharp stomach pains, intermittent but coinciding unfortunately with mealtimes. Time to go back to my files and research all the side effects for my 8 prescriptions, I'm afraid. This can be a nuisance - thank goodness for the MedlinePlus drug information files on the Internet, as those patient information leaflets always seem to disappear when one needs them.

Once I've looked at all the information I can determine whether or not this paticular problem might be a side effect of one or more drugs (so far, I've found it for at least 3 of my prescriptions). I'll see if the symptoms get worse. If they don't I'll talk with Dr G next week when we're in Cleveland. If they do I'll call his office tomorrow.

Gone are the days when every ache and pain made me panic - might this be a sign of the cancer's return? Does every other patient feel this way or am I the only one? Am I going to be [crippled, bald, incapacitated, incoherent, comatose - whatever!] for the rest of my days because of this?

I know my body well enough now and have lived with renal cell long enough to know that I'm most likely to be in trouble if I develop severe diarrhea or severe confusion. Almost everything else that I've come across so far can be controlled through dosage adjustments or other medications. It takes a while to gain that level of - call it confidence - in interpreting one's symptoms. And, I am never going to try to self-diagnose. I am my first line of defense, but the heavy artillery remains in my doctors' hands.

Much to Marmaduke's displeasure (the 19-lb one-eyed Maine coon cross who's sprawled over my papers next to me) I'm heading into town for more adventures at the old house. Cat logic: you're here, I'm here, why should you want for more? Telling him that it's only temporary doesn't cut it ...

Tidying up

Nothing new on the medical front. I'm just taking it easy and waiting for the next step; that seems to be the best way to handle things anyway.

Last week we sold our old house in town and now are in the throes of clearing things out. We've found, not surprisingly, that things we've gotten along without for a year can very likely go straight to Goodwill. Amazing how much clutter builds up and how much we think is "vital" to us. Does Saint H really need all those t-shirts? Can I do without those dress shoes? (That would be "no" and "yes", respectively)

We didn't get everything cleared out of the old house when we moved because I was too sick to do much of anything. Last summer was pretty forgettable, in the long run, except for being on the farm in peace and quiet. I am so glad that we moved!

Here's a list of books that I read in the past month:
NONFICTION

Madeleine Albright: The mighty and the Almighty

Amy Butler Greenfield: A perfect red (on cochineal)

Cass R. Sunstein: Radicals in robes: why extreme right-wing courts are wrong for America

Reza Aslan: No God but God: the origins, evolution and future of Islam

Dorothy Sheridan: Wartime women: a Mass-Observation anthology

FICTION

Amanda Quick: Mischief; Surrender; Seduction; Ravished; Reckless; Dangerous (it was a long weekend of light reading - need I say more?)

Priscilla Royal: Wine of violence; Tyrant of the mind; Sorrow without end (a medieval mystery series)

Roberta Gellis: Lucrezia Borgia and the Mother of Poisons

I think everyone should read No God but God; it does help make sense of what's happening in the world today. (Well, there's very little sense to be made of what's happening, but you know what I mean.) The Mass-Observation project in Great Britain encouraged women to record their thoughts and observations on everyday life leading up to, and during, World War II. It's a little like reading a blog ...

I'll mention the Harry Potter series now, but not again. Those live in the bathroom and I read them through regularly; have probably made it through the series to date a dozen or so times so far.