We had some mighty wicked winds whipping through this part of the country last night. They were very loud... and so was the empty trash can that kept getting tossed from one end of the yard to the other, and back again.
Just finishing week 1 of the clinical trial; tomorrow I go back for blood tests which will really be the indicator: are my numbers better, worse, or the same?
The drug itself has had two major side effects: nausea and skin itching. The nausea is particularly troubling but as long as I'm not actually hurling, I consider that manageable. However, locked in the grip of urpy-ness, I can't really get much done. I'm afraid to run errands because what if this is the time I barf? The only thing I have for nausea just makes me sleep for a couple of hours. I've tried ginger, wrist bands, etc., without success.
So I'm sleeping or sleep-walking through most of my days. The gutters need cleaning (they'll need it again in 4-6 weeks) and the yard needs mowing and raking. My backyard gate is still wonky. I bought the turnbuckle stuff to fix it but never got around to it. My chore list seems to grow daily and I'm starting to feel a bit overwhelmed. There is so much to do, stuff I feel like I should be able to take care of myself. I can't continue to impose on my friends; they've already been more generous than I ever expected. I may just try to find some cheap labor on Craig's List.
Recent Netflix movies I enjoyed: The Grocer's Son, The Chorus (both French.) Au Revoir!
Monday, September 28, 2009
No News is No News
Thursday, September 24, 2009
Support LLS
Here's one that won't cost anything: Click on the Social Vibe link (below the blog archives in the right hand column) and follow it to support LLS.
Traverse City: Water Fun
Isn't this a great picture? Bro 1 and I look a bit squinty and scowly. "Can't we just go? You said we'd leave when we had our life jackets on. No fair!" All the Cincinnati cousins came this year, so the Bro's had one more boy-person on their side.
Aunt Sonia (“Tootsie”) looks on as Cousin Henry & I prepare to depart on a great paddle board adventure. Why, just look at those treacherous white caps! Yeah, the nearest wave was probably... in the Pacific Ocean.
Uncle Joe demonstrates yet another form of paddle board exercise: the head balance. Bro 2 and I are eager to try out our new water toy: sit inside the styrofoam ring, squeeze a hidden bulb and squirt water from the gator's nose at whoever was within range. The water was very shallow for a long ways out and on most days, as still as glass. My Cincinnati uncles, Joe and Sid, were both very funny guys and kept us laughing all week.
Aunt Rhea with Bro 2, Cousin 3, and meself back there in the chair. "Nuclear family" lines were erased as every aunt and uncle parented, cuddled, fed and disciplined every kid. None of the cabins had televisions, but I seem to remember the men bringing transistor radios (back then, the size of a shoebox) to listen to critical baseball games.
Our childhoods were so much simpler and less complicated than what kids experience today. Of course, no computers. And no calculators, not even adding machines. No videogames. Board games were Sorry!, Candyland, Chutes & Ladders, and Scrabble. We were mostly to small to play Twister competitively but that didn't stop us, and every game ended up in a heap of hysterical giggles. We played pretend a lot, with nothing much but our own imaginations.
Dueling Dahlias, Part Deux?
Miles for Myeloma
Miles for Myeloma began as a group of Dr. Abonour’s patients who wanted to organize a run/walk event to raise funds for multiple myeloma research at Indiana University. Rather than have his patients plan a standard participatory event, Dr. Abonour offered to cover the miles (and the state of Indiana) himself. In two days, he cycled from Carmel to Marion, then ran from Marion to Fort Wayne. The weather was unseasonably hot, and Dr. Abonour was actually hospitalized briefly in Huntington, but stubbornly insisted on completing his mission. In its first year, Miles for Myeloma surpassed its goal of $25,000, raising $130,000. For his efforts, Dr. Abonour was recognized in Sports Illustrated. (Read about the history of M4M here.)
In 2007, after running from Indianapolis to Bloomington, more than 250 of Dr. Abonour's patients and family members formed a human tunnel to welcome him onto the football field.
On Oct. 2 and 3, 2009, Dr. Abonour will bike from Evansville to Bedford to Indianapolis, covering 200 miles in just 48 hours. Thanks to the efforts of IU myeloma patients, Miles for Myeloma -- now in its fifth year -- has raised more than $1 million. These funds go directly toward multiple myeloma research at the Indiana University Melvin and Bren Simon Cancer Center.
Although Dr. Abonour's efforts are as inspiring as ever, and the patients'/caregivers' fundraising efforts are just as awesome, the funds coming in are far below what they have been in the past. Please consider a donation. No gift is too small and every gift is appreciated. Remember, this funds MM research and nothing else! Here's another way to consider a gift...
If you have a job you like, send another $3
If you are relatively healthy, add $5
If your loved ones are healthy, add $5
If you have health insurance, add $3
If you belong to a religious congregation, add $2
If you have a reliable car, add $2
If your family eats dinner together, add $3
If you have a best friend, add $2
If s/he doesn't have cancer, add $2
Wednesday, September 23, 2009
One Year Ago
It's hard to believe my stem cell transplant was one year ago today! Unfortunately, my immune system was not reborn. It's still limping, dragging, stumbling along. So many jokes about being a lifelong underachiever just aren't funny any more.
I survived Day 1 of the clinical trial yesterday and since it was a bit of a marathon, I'm going to celebrate that instead. 12 hours in the hospital. Blood draws every 2 hours. IV sedation and another bone marrow biopsy. Disgusting, repulsive hospital food (they're concerned about nausea, but they send buttermilk salad dressing?) but I anticipated that and brought a little food with me; not nearly enough. Lots of little annoyances. By 3pm I was watching the clock... with 5 hours to go!
Finally, at 7:45 the nurse (a new one, right after a shift change) came in the check "vitals" before my release. And I had a fever of 100.9º. The protocol said the nurse had to get someone's okay if I had a temp of over 100.5º. I explained that I'd been under blankets for two hours because the room was set at "arctic" and I couldn't adjust the thermostat. Doesn't matter, the nurse is not going to put her neck on the line by releasing me without someone else's say-so. Here's where it starts getting silly. She pages the doc on call, who never answers the page. She starts going down the line, guessing who to call, consulting -- of all people -- the switchboard operator for suggestions. And I'm getting angrier, she's getting more upset, the few people who answer the page say, "I don't know anything. I'm not signing off." I'm ready to write my own waiver and yank the IV out myself. I felt badly for the nurse, and vice-versa. My friends were waiting for me downstairs and I had no way to reach them. (Duh - we've never exchanged cell phone numbers since we both just use them for outgoing calls.) After she checked my temperature again, I finally bullied the nurse into letting me go. It was traumatic for both of us and we parted with tears and hugs and good wishes.
I had a lengthy discussion with the research nurse in charge of the whole deal; her "system" for medical oversight had proved to be a house of cards. I seriously considered dropping out of the clinical trial, but after I reviewed my litany of complaints, I saw that most of them were quite petty or easily addressed. And the big one, well, everyone is entitled to one mistake, even if it's a humdinger. So I'm going to hang in there for the time being.
Here's the punchline: my Kappa Light Chains have tripled and then doubled since the last labs, just over two weeks ago and the Kappa/Lambda Ser. Ratio and the urine protein are increasing at similar rates. So... there is a chance, even a likelihood, that my oncologist may just pull me off the clinical trial and pop me in the hospital for some high-dose chemo. Well, the slingshots haven't been working, maybe it's time for a cannon.
Monday, September 21, 2009
Big C Update
I was accepted into the Clinical Trial and will begin tomorrow. Day 1 includes 12 hours in the hospital, mostly just to monitor my reaction; I will have a blood draw every 2 hours. I will also have a bone marrow biopsy and have requested IV sedation for that. It may mean dealing with my dear friends from Intervention Radiology (aka the IR Pricks) but I really do not care to be awake for that procedure, so it's worth a risk to me. I return to the hospital Wednesday morning for one more blood draw, and then I'm on my own. The drug is in pill form, so I'll just take one a day for 28 days, then return to the hospital for a repeat of Day 1.
I'm hopeful for good results from this drug but if it doesn't work out, I can always go back to Velcade, or Revlimid, or another agent. The good thing about the clinical trial is that it does not include a steroid. I know the steroids mitigate a lot of side effects, and help with stamina and pain management, but I really value my sanity so it seems like a fair trade-off.
- Film Star Goes Public About Multiple Myeloma
- Wish I Was There IMF 3rd Annual Comedy Celebration Hosted by RAY ROMANO • Featuring JASON ALEXANDER, DANA CARVEY, BRAD GARRETT, JIMMY KIMMEL, DORIS ROBERTS, BOB SAGET, and FRED WILLARD • Special musical performance by TENACIOUS D with JACK BLACK & KYLE GASS
- About the Peter Boyle Memorial Fund
Mediterranean Tuna Salad
1 12 oz. (or two 6 oz.) can chunk light tuna, drained
1 stalk celery, chopped
3 Tbs fresh lemon juice
2 Tbs EVOO (the good stuff)
2 Tbs brine-packed capers, drained & coarsely chopped
3 Tbs silvered almonds, toasted & coarsely chopped*
salt & pepper
Optional dill springs
*watch the almonds; there's about two seconds between perfectly toasted and burned to a crisp.
Stir together tuna, celery, capers. Drizzle with lemon juice & olive oil and stir just to combine flavors. Add salt & pepper with a light touch; the tuna & capers are already a bit salty. Stir in toasted almonds just before serving. Serve on a bed of baby greens with fresh crusty bread. (You are now cured of gloppy, mayo-drenched tuna salad!) Bon appetit.
Saturday, September 19, 2009
Like Hell Only Cheaper
I think he has a onesie on…like a gangster leotard. Connecticut.
It's not just fat people in stretchy clothes. It's not just mullets and rat tails. It's not just stuff stuck, painted on, and glued to trashy cars. It's not just t-shirts with obscenities and clothes that don't cover nearly enough. It's all of this, in combinations you've never imagined, and so much more. Spend a little time at PeopleofWalMart.Com.
(This was a little wake-up call for me, and a reminder that cameras are everywhere. Lately, I've been leaving the house without a quick face-and-hair-check. No more.)
WalMart: Just like Calcutta but with better parking!
Other clever slogan suggestions (and in the comments, too) here.
WalMart don't get no respect... and that's as it should be.
Dueling Dahlias
Bro 1 is one of those people who happens to be very talented at almost everything he does, even his hobbies. (Thankfully, he has many other good qualities to balance this out.) Just in case we thought that the dahlia he brought to me last week was a fluke, a one-shot wonder, Bro 1 sent us all this picture of the next flower, produced by the same plant. And it is just as gorgeous, isn't it? We don't have a ruler in the shot to verify, but it sure looks as big as the previous flower, which was eight inches across.
Mom is normally a very easygoing sort of person, but apparently this sparked her competitive streak. She believed her flowers were every bit as impressive, and that she should be recognized for her efforts. Who knows how many hot summer hours she spent in the back yard, how many gallons of Miracle Gro were used, all to tenderly nurture her dahlias...? But Mom finally sent us a picture of her finest flower:
Good on you, Mom!
Thursday, September 17, 2009
R.I.P. Patrick Swayze
Patrick Swayze died a few days ago of pancreatic cancer. I don't think he was a brilliant actor (something he'd probably have conceded, too) but he was appealing and endearing. Men liked him for his macho, manly roles in movies like Road House and Point Break. Women loved him in uber-chick flicks like Ghost and Dirty Dancing.
Swayze should have won an Academy Award for the latter, not for his performance per se -- it was actually a pretty bad movie, a saccharine Catskills schmaltz-fest -- but for uttering with any believability whatsoever one of the stupidest lines in cinematic history: "Nobody puts Baby in a corner." I liked the movie in spite of that, more because of my lifelong crush on Jerry Orbach. (Let me just add that I reserve the right to hurl on any human being I ever encounter named Baby, Precious, Honey or Darling.) My favorite Swayze movie was To Wong Fu, Thanks for Everything, Julie Newmar. If by some chance you missed this brilliant film, put it in your Netflix queue right away.
But more than any acting role, I admired Swayze for that excruciating, invasive and slightly idiotic interview with Baba Wawa. He and his wife were humble and sincere in spite of Baba's inanity, and I hope he is recognized, and gets some kind of lifetime award for enduring that interview. He was gracious, tolerant, and unbelievably patient, all while millions of viewers were probably yelling at the screen, "Smack her! Come on, just one good punch!"
Quality of Life IS a Valid Issue
...We live our lives with whatever mix of things that give us pleasure and steps we take to be responsible, and sometimes we enjoy health and sometimes we get sick. But if we live only within the bounds of responsibility, if we forgo completely the pleasures, we will miss the point of all this striving for longevity, the whole reason for living. And we might get sick anyway.From a link (thanks, Anon) that I recommend everyone take a look at:
For a Cancer Survior, Living (Well or Not) Is The Best Revenge
Wednesday, September 16, 2009
Patients never fail
I dragged myself to a support group meeting on Monday night. They're all nice people, but most of them are having a very different MM experience from mine, and all of them are married, so I usually leave feeling even more lonely and alone than I was before. I was put on the spot, not thinking fast enough to just say "I really don't want to talk about my situation." So I briefly mentioned the clinical trial, but that I'm still reserving the right to cancel that at any time, and to refuse further chemo if I so choose.
If any people on the planet might understand why I'd consider stopping treatment, I would expect these people to. I didn't expect a stamp of approval, just a little understanding. But they were all alarmed and horrified, and they just couldn't stop beating me up over it. "Well, I just don't think you should ever give you. You just never know, there could be a new drug tomorrow!" Thank you, Harry Sunshine. But you haven't been in treatment FOR 18 F***ING MONTHS! It was a huge disappointment to me. A not-very-supportive support group.
Supernurse G did offer this little pearl that I'm clinging to like a lifeline: "Treatments can fail to work for patients, but patients don't ever fail treatment."
As it happens, this was her last support group meeting. She's been overloaded for some time, and she's earned a break. She has done this for three years, on her own time. I keep saying I'm going to quit, but end up going back. This time, I left feeling that I really can walk away, and I probably will.
Tuesday, September 15, 2009
Talk to The Face: Emmargudtars
I was already peeved. The pet store had stopped giving out samples because some folks took advantage, and were using the samples in place of dog food. I (she said self-righteously) only took one or two at a time, supposedly for Molly to try, but also to keep on hand when I run out of food and it wasn't errand day. So I was extra surprised when I left the store loaded for bear, and someone tried to start a conversation with me in the parking lot.
"Hadja lockum tars?"
"I beg your pardon?"
"Hadja lockum tars?"
"I'm sorry... I don't understand."
"Em tars, tars." He pointed downward. "Dja lockum?"
I was trying to read his lips. Was this really English?
"Themmur'a same tars ahayed on m'lass core. Emmur gud tars."
Tars...Tires? ...TIRES! Goober was talking about my tires! How d'you like them tires? Them are the same tires I had on my last car. Them are good tires.
I had been to the doctor, so I was dressed like a human. And it was bath day. So I guess I looked presentable, but nowhere near fetching: not the same planet, not even a nearby universe. Was this just another instance of a stranger being drawn to The Face? Was this the worst pick up attempt in history, or was this guy really excited about the tars, I mean tires?
{And why, oh why, can't My Staties learn to conjugate the verb To Be? Match the pronoun and the verb. I am, you are, he is, they are. Not "them are." And certainly not "Emmur.")
Saturday, September 12, 2009
The Giant Pitcher Box
For most of my life, I had a 13" television. That was fine; in fact, I sort of liked the fact that television vs. reality was so easy to differentiate. And nothing is that scary on a 13" screen! When my last 13" died, my parents decided it was time for me to lurch forward a few decades, and they bought me a 19" television. It looked huge to me ... but eventually I got used to it. I even came to appreciate the bigger screen; I could actually read words and messages when they were displayed. And now I have pole-vaulted ahead once again with the purchase of The Monolith: the 42" Samsung behemoth. Again, I have to admit that viewing is much more pleasurable, especially for movies. The most important thing to me, though, was that it fit into my entertainment armoire, so that I can close the doors on it when I'm not watching. I've always hated big televisions that just sit there like a silent bystander, eavesdropping on every conversation.
The worst example -- it still stands out in my memory some 30+ years later -- belonged to someone I knew when I was in high school. Mike M. had a day job with the street department. His side line was .... recreational substance procurement. I liked him okay, but I was really in love with his dog. Spanky was a little black and white Australian shepherd mix., a 20 lb. mutt. He went almost everywhere with Mike, and he was like one of those old-time circus act dogs. Spanky would leap, twirl, flip himself into Mike's arms, or sit like a parrot on Mike's massive shoulder.
Mike was a guy with a lot of disposable income and not very much taste. He was a dim bulb, but at least smart enough to avoid drawing attention to himself. He drove an old truck, and lived in a small bungalow in a rather dicey neighborhood. His only indulgence was a great big television and a very good stereo. But Mike lived in fear of someone breaking in and stealing these treasures, so he built what I called The Coffin. It was probably six feet long, four feet high, and maybe three feet deep. The corners were solid 4x4s. He cut holes into the plywood front for the television, receiver, tape player, etc., and bolted everything in. No one was ever going to walk out with those items. And it was backlit! Mike's version of an aesthetic feature, I suppose, but it made it look like an altar -- an altar to bad taste. It really was one of the stupidest, ugliest things I've ever seen, and I've known ever since that I would either have a very small television, or one that could be hidden behind doors, or both.
Thursday, September 10, 2009
The Voice of Experience
Actor, author, comedian, screenwriter and cancer survivor Evan Handler shares a few thoughts on health care, the propsoed bill, and Mr. Wilson's uh-oh moment: Have You No Decency, Sir?
(Years ago, I read his memoir, Time on Fire. Brilliant.)
Soup to Nuts to Generosity
I went to the Cancer Pavilion today to clear the first hurdles for the clinical trial. First an EKG -- less than 15 seconds' worth! -- somehow confirmed that I was within their parameters, heart murmurs notwithstanding. Then a blood draw, and then a skeletal exam, a long series of x-rays. I should know in a day or two whether, as Heidi Klum would say, I'm in or I'm out.
On the way home, I made a rare stop at Aldi Foods. It's one of those bring-your-own-bags, pay-for-the-shopping-cart super cheap groceries. Except that most of the groceries aren't super cheap; you've got to do your homework. But they do have good prices on produce (look carefully) and nuts and a few other things. It's not really close, and it's in a dicey area so I don't shop there often.
It happened that I was dressed like a grown up; I don't go to medical appointments in shorts and t-shirts, although many people do. I was three steps up the ladder, in clean dress slacks and a pressed shirt. That also made me a bit of a standout at Aldi. I usually see both extremes there: On The Way To Church, complete with jewels and hats, and at the other end, Just Rolled Out Of Bed (Wearing This). I figured I was close to the middle. The woman in line ahead of me was much better dressed: casual but elegant designer wear, coordinated but decidedly hip accessories. She had a big ol' cartful of food, buying several items by the case. People often shop there for church dinners, group homes, etc. I watched her unload two cases of canned soups, two cases of cereal, a case of sugar, a case of vegetable oil, a case of canned tuna, etc.
I said, "Gosh, you must be cooking for a big crowd." "Not really," she replied, and turned away. Contrary to popular opinion, I am capable of keeping my yap shut on occasion, so I just let it go. As she put the last item on the belt, she turned away from me and said quietly, "It's for a food drive." I respected her privacy, her modesty, whatever the heck it was, but inside I was doing backflips and cartwheels. Her bill came to over $90. (That's three weeks of groceries for me.) Like most people, I would just scrounge a can or two from the pantry -- some weird vegetable, something I bought accidentally -- but this gal was shopping for a food drive. It made me happy all day.
Maybe we shouldn't eat all the rich.
Shut Yer Pie Hole
Gum'mint 101: The reason we (society, civilization) evolved into systems of government is so that we could find civilized, adult, mature ways to solve problems and address differences. Those methods do not include telling a Senator, from the Senate floor, to go f____ himself. They do not include shouting "You lie!" at the President of the United States when he is addressing the country, as Rep. Joe Wilson (R-SC) did last night. In fact, those are perfect examples of what civilized, mature adults are not supposed to do.
If you can't wear big boy pants and behave yourself, you simply should not be in government. Period. End of Discussion. Apparently voters in his home district feel the same way; I heard on NPR today that his opponent has raised over $100,000 since Wilson's Big Boo-Boo.
Wilson is the Poster "Child" of the New Republican Party
Oh, and P.S. turns out Wilson is the liar. (Who's surprised?) According to MSNBC's Dylan Ratigan and Politifacts' fact-checker, Bill Adair:
Obama is right. When you look at the bill, it does go to some lengths to make sure that illegal immigrants do not get the credits for the health care exchange that would allow them to get free care. They'd have to pay for it, like everybody else. False for Wilson.PANTS ON FIRE!
Tuesday, September 8, 2009
Obama Threatens to Spread Liberal Cooties
So now the neo-con hysterics are afraid their children will catch... what, tolerance? ...by listening to President Obama. He's offered written copies of his comments, which simply emphasize the importance of education and staying in school. But apparently that's a wild-eyed liberal's agenda, and the neonuts are having none of it - they're actually planning to keep their children out of school rather than subject them to such outrageous heresy. (I wonder if this isn't a somewhat slow-moving stream of Darwinism.)
Kerry says that the very same thing happened when Bushie Senior was planning to speak to schoolchildren; that liberals were up in arms and accused him of trying to propagandize his message. I don't remember this happening at all. Does anyone else? Not to say that Democrats aren't capable of separate but equal acts of idiocracy, I just don't recall this event.
-----------------------------------------------------------
From my pal, Anon: When Bush Spoke to Schoolchildren, Democrats Investigated, Held Hearings. I wonder if Anon actually read the article, which seems to support my contentions:
I call this the Socks on the Floor Theory, aka It's Different When I/We Do it. From one commenter:
Unlike the Obama speech, in 1991 most of the controversy came after, not before, the president's school appearance. The day after Bush spoke, the Washington Post published a front-page story suggesting the speech was carefully staged for the president's political benefit. "The White House turned a Northwest Washington junior high classroom into a television studio and its students into props," the Post reported.
...the General Accounting Office concluded that the Bush administration had not acted improperly. "The speech itself and the use of the department's funds to support it, including the cost of the production contract, appear to be legal," the GAO wrote in a letter to Chairman Ford. "The speech also does not appear to have violated the restrictions on the use of appropriations for publicity and propaganda."Good for the goose, etc.
The President has every right to speak to the children of the country. It's a good opportunity [if taken advantage of] to have a smart discussion about politics and how our government in general works. Sadly I feel people who are attempting to boycott the speech show an indefendable overreaction and will be looked upon rather silly.Thanks, Anon.
End-of-Summer, Happy Birthday, Thanks-for-Everything Dinner
For some reason, this round of bad news (fifth? sixth?) has been much harder than all the previous ones. In fact, I felt so bad, I asked Supergirl #1 to postpone a planned visit. I hated to do it, but I just didn't want to see her while I felt so low.
Instead, her dad (Bro 1) came down for a visit on Saturday, to offer some much needed -- and much appreciated -- moral support. Along with some tasty tomatoes, this is the dahlia he brought from his garden! My photo doesn't do it justice; it is buttery yellow and every bit of eight inches across. If you've ever been to a dahlia show, this is exactly the kind of flower the pro's are all trying to produce.
Taking advantage of his "strong back, weak mind," (his words, not mine) we shopped for a new microwave. My old one died suddenly and I quickly realized that I cannot live without a microwave oven. Well, I could, but it seems so barbaric. We enjoyed a Mexican dinner and a Red Box movie, The Caller. Some of the complex plot twists eluded me, but Bro says I napped through the first half. Sis & her beau came for a quick brunch Sunday morning, and then Bro 1 departed northward for a parental visit before heading home to Chicago.
On Monday morning, I realized that my chores were done and my house was still relatively clean... so I decided to ask the Hoodies over for an impromptu end-of-summer dinner. Since it was very last-minute, I expected about half to attend, but -- surprise! -- everyone was up for it, and dinner for five or six became dinner for ten. (Four others were out of town, or they surely would have attended, too.) I whipped up a potato salad and a delicious Mediterranean tuna salad. It had celery, capers and toasted almonds, and instead of mayo, some fresh lemon juice and "EVOO." All the hoodies' contributions were great, especially Mary Ann's Rustic Tomato-Basil Tart, direct from Stir Crazy's favorite recipes. And, oh by the way, our modest bachelor buddy revealed that it was also his birthday, so I quickly declared it his birthday party.
It was fun, but a bit tiring, and by the end of the evening, I was just about cross-eyed with exhaustion. I think this was the first time in two years that I've hosted almost all my neighbors. It was nice to finally reciprocate, after enjoying their hospitality so often. I know that everything they do for me is done without ever wanting or expecting anything in return. Even if I wanted to somehow repay them, I would never be able to do so. Still, I was grateful to offer a gesture of gratitude, even on that very small scale. Thanks to awesome family and friends, my crappy holiday weekend, on the heels of yet more crappy medical news, turned out to be pretty good.
PHOTOS - Top: The Dahlia That Ate New York, via Chicago. Middle: My modest fleurs du jour, zinnias, cosmos, and the last of the daisies. Bottom: From my one pepper plant and six tomato plants... this year's total harvest.
Saturday, September 5, 2009
Big C Update
I could just send you here, or here, or here, or here. Or here.
I could just make a tape of the same conversation, and play it every couple of months for my parents, siblings and friends.
Treatment holiday is over. Apparently, if I'm not actively hammering my cancer, my cancer is actively hammering me:
- Monoclonal Protein ... 7 (June) to 18 (July) to 69 (Aug.) (normal 0-0)
- Kappa Light Chains Free Ser mg/L ... 125 to 169 to 262 (normal 3.3 - 19.4)
- Kappa Lambda Ser. Ratio ... >41.80 to >56.33 to >262.50 (normal 0.26 - 1.65)
- and the show-stopper, protein in the 24 hr. urine collection has gone from 194 to 437 to 1794 (normal 0 - 150).
I sound like a broken record. I feel like someone who's been left back in Kindergarten four times. The horse who can't get out of the starting gate. The little engine that couldn't.
Next week I will be assessed for a clinical trial, specifically for people like myself with difficult, persistent MM. If I'm not accepted, I'll have to go back on Revlimid or Velcade. And climb back on that crazy Dex ride, a combination roller-coaster, tilt-a-whirl, and pin-the-crying-jag-on-the-hysteric.
There is some good news. (And by now, I've become quite experienced at finding it.) First, my symptoms are moving much more slowly than my numbers, and I'm very grateful for that. Second, although this is taking on the proportions of some epic saga, some endless, tedious tale, my family and friends are still standing by. If they're suffering from any compassion fatigue, they're managing to keep it from me. I'm blessed, and thankful that I still have such incredible support.
Thursday, September 3, 2009
Stink-N-Flea-B-Gone
Why do dogs love to roll in stinky stuff? This is one of Molly's favorite activities and it's a mystery to me. I read that humans can smell about 300 scents and dogs can distinguish about 10,000. But still -- can't they tell the difference between stinky and not stinky? I guess they just have different criteria.
Without the stinky alert, it can be hard to tell when a black dog needs a bath, so I just give her four baths a year. Of course, if she exceeds the stinky threshhold, we make exceptions. A couple years ago there was something heinously stinky in our friends' yard. Molly found it was irresistible... and she had four baths in a week! On one occasion, she was so foul, we hosed her down in the driveway.
Molly was getting quite fragrant, but today that was actually a secondary issue. Something has been eating me alive at night. Bite after bite after bite. Molly's not scratching and I can't see anything on the floors, the sheets, etc., so I decided that a flea bath would be like a bowl of chicken soup: it couldn't hurt.
One of the greatest inventions of this short century has to be the dog wash station at our local pet store. For $10, you can wash your dog (they provide all kinds of fancy shampoos and fragrances), and the tubs are raised so you don't have to bend over! Once in the tub, you clamp a collar to a ring on the wall: there is no escape. Each station also has a high-powered dryer. I'm telling you, they thought of everything. It is such a bargain to make that big mess there and not in my tiny bathroom.
A store employee helped me lift her in and out; Molly refuses to walk up the ramp. There are four tubs, and only one other was occupied; a couple was washing a 100lb German Shepherd who was so distraught, he could hardly move. I used our own flea shampoo first, then washed her again with the fancy stuff. She particularly hates having her face washed, but she endures the bath pretty well, a stoic martyr. The dryer is another story; she absolutely quakes. I know we took care of the stink; I'm hopeful that we also solved the critter issue. But if she finds something else to roll in, we're going right back to Doggie Gitmo: I bought a whole pack of dog wash coupons.
Wednesday, September 2, 2009
Don't Believe the Lying Liars
Health Care Reform without a public option is like treating a heart attack with a bandaid -- a stupid, worthless token gesture. We need real reform, now. All of the credible experts agree that the worst thing we can do is nothing. We have the votes, we just have to convince President Obama and Congress to pretend they have backbones.
Here's a brilliant analogy from author Erica Jong: Don't Let the Crazy People Win This One.
If you're still on the fence, please read this very brief and concise article: 8 Myths About Health Care Reform (and why we can't afford to believe them anymore).
The lies and distortions intended to frighten us away from the issue are, unfortunately, having an effect on the uninformed. So arm yourself with the facts. The following websites are run by nonpartisan organizations with no stake in the proposals:
- The Kaiser Family Foundation's side-by-side comparison of the details of the leading proposals
- The Annenberg Public Policy Center's fact checker
- Politifact.com's Truth-O-Meter
Smarty Pants Dance!
Well, I can't resist doing a little Smarty Pants Dance today. Although I've been with my current mortgage holder (rhymes with Shuntington) for 20+ years without so much as a single late payment, they wanted almost $4,000 in closing costs to refinance. The snafu over the lot number gave me a little time to do some research -- yes, I should have done it sooner!
I learned that the bank (5/3) where I have my little Home Equity Line of Credit would offer me the whole package -- paying off my first mortgage plus borrowing the money to do some home improvement -- for ZERO closing costs. Nada, zip, zilch. AND they are offering me prime plus .75% for a current rate of 4%! I can lock into a fixed rate at any time but I can't see any reason to do so. AND because I will borrow the extra funds as I need them, I will actually pay down the principal much faster. I keep trying to find the catch, the hitch, but there isn't one.
I'm feeling like a clever little monkey. Takes the sting out of some of my recent bonehead moves. Viva La Villa!
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P.S. As of March 31, 2009, nearly 22% of all U.S. Homeowners owed more on their mortgages than their property was worth. (Source: Zillow.com) Even when I borrow the full amount needed for my projects, my debt will be about 1/3 of the home's assessed value.