Wednesday, September 26, 2007

Balloons



Velcade often causes gas (and worse blowouts). It is a potent chemical weapon causing facial contortions. So I have the week off. (from Roswell at least!) We celebrated with a quick trip to the Adirondack balloon festival this past weekend.

There is nothing more wonderful than being surrounded by love and laughter. Friends and family from all over the country made for a weekend I'll always remember.

My nephews specialize in anarchy. So I got the younger one a CB radio for his birthday. We built a fire to destroy things in. I think explosives are needed. Ma and Dad 'll appreciate that I'm sure. They live 3000 miles away so we should be safe on the east coast.

Wednesday, September 19, 2007

Quinine

Other than the general pain in the ass of spending a good portion of a day sitting around reading John le Carre' or listening to Dune (Frank Herbert) I have to admit to feeling just fine. Velcade (bortezomib) messes with cellular level protein "recycling". Being an avid recycler and former bicycler has undoubtedly altered my cellular level wisdom. Therefore intracellular protein buildup caused by Velcade which often leads to a cellular level dehydration manifested as fatigue just ain't happening. (ha ha) Quinine is suggested as a counter measure. Unfortunately tonic water without the gin is pretty nasty stuff (and loaded with high fructose corn syrup or aspartame). The only FDA approved use is for malaria so a script is not an option. Do you know of any other sources?

Saturday, September 15, 2007

Joanie


My dear friend Joanie won her battle with breast cancer this week. Great news in a difficult to articulate, tough to deal with sort of way. It is wonderful having friends you can count on for a laugh and a smile. Those special few who somehow just shine despite the weather. I am blessed with memories of Joanie shining brighter than ever, burning off some of that fog that settled in like pea soup, stranding me panicked scared and lost while out cruising on the Cancer Parkway. I am honored to have such a beacon shining in the here-after. Shine on girl friend.

Oh yea and that Friday evening trip down the Parkway to Velcade has left me feeling just fine. Nice place, no fog!

Thursday, September 13, 2007

Side Effects


I am happy to report that no unusual regurgitations have occurred. Just the normal verbal drool. I can see just fine. Of course the weird headache and runny nose must fall under one of the 3 pages of potential side effects somewhere. I couldn't just have the sniffles. No hysteria in that! When I stop laughing about this crazy journey of mine you'll know they finally gave me some nasty shit to shut me up.

Wednesday, September 12, 2007

Trial-R1

Well the defense team was stellar yesterday. In fact bored at the lame pace of events. Stick and suck, wait, poke, prod and measure... wait, stick and drip, wait, measure, wait, measure, wait, measure wait. 8 hours later I left for home. Neither my blood pressure or temperature reacted. I got through most of a good murder mystery set in the fictitious town of Millers Kill, just up the Hudson River from my home town. I like the way places and businesses were renamed to protect the innocent. When the nurse pulled my IV and splattered blood on the page I was reading it added nicely to the thrill.

In short I was randomized in the clinical trial to receive the high dose of TRM-1 (a Fully Human Monoclonal Antibody to TRAIL-R1 which appears to have some anti-myeloma efficacy). So after I received the Velcade and a 1 hour infusion of TRM-1 I sat around for 4 hours to make sure I didn't have an allergic reaction. Hence all the measure and wait crap.

The Benadryl they gave me knocked me out by 8. Now I just feel like I had a lousy breakfast. I'll be watching for these especially exciting Velcade side effects:

  • vomiting material that looks like coffee grounds (I filter my coffee)
  • inability to speak or understand speech (normal interaction with colleagues)
  • loss of memory (normal, besides how would I know?)
  • loss of vision (after the memory loss would be preferred)
  • difficulty thinking clearly (maybe Lu could comment on these?)
  • difficulty using good judgment (normal)
  • difficulty understanding reality (normal)

Provided I can see if I hurl coffee grounds you all will have to let me know if I seem to be especially "normal" in some unique way.