No News is No News

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!

Support LLS

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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?

They just get more and more spectacular, don't they? Mom says this bi-colored beauty is nine inches across. There's no ruler in the photo but we all know Mom wouldn't lie, or even exaggerate. Much.

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 still have a job, send $2
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

You get the idea. When you've decided what your gratitude is worth, click here to give it some legs. Tell them The Coot sent you. And as someone who benefits directly from those MM research funds, THANK YOU!

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.

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