Tuesday, October 13, 2009

Huge relief

Huge relief.

Huge pain in my legs from the Dex; haven't gotten "Dex voice" yet but that is coming so I'll take some Pantroprazole before I hit the sack.

Huge bill from the best Italian food in LA, but it was worth it. Some amazing wine courtesy of my wine group.

2005 Kongsgaard "The Judge" Chardonnay - (the one I brought, and I thought one of the three best)
2003 Chateauneuf du Pape Blanc, cant recall the winery, but quite nice
2001 Riseling (German) which did not pair well with the food but which would have been quite nice if paired better
1995 Brunello di Montalcino from another producer whose name is forgotten -- a very nice bottle from a great year
1992 Jarvis -- I didn't recover from cancer to drink wine this mediocre -- the clear odd-man out for the evening
1986 Gruaud Larose -- a stupendous Bordeaux which is drinking wonderfully right now
2000 Sine Qua Non Incognito -- nothing less than the greatest Grenache ever made in the United States

There were six of us over three hours, and I had a driver for the evening, so it's not quite as bad as it looks just from reading the long list. Suffice to say, though, it was good to blow off my concerns of earlier in the day. By the end of the second wine, I was okay. But the fifth wine, my primary concern was no longer cancer, but the poor quality of that bottle. :)

This is an abject lesson in the need to remain vigilant, and a reminder that even when one achieves CR, one has to wait the magic 72 months before one can be confident that one is really cured for good. I remind myself, also, that the medications I am on for maintenance while in complete remission are the same medicines that most doctors prescribe to people with highly active disease. I remain on the "kill it, kill it, kill it!!!" program and I'm happy to be here.

So now, off to take an Ambien so I can hopefully sleep.

Nighty night, folks.

All clear

Brief message from BB, through BJ, after reviewing the labs that I faxed to him.

"This is nothing. Do not be concerned."

HUGE relief.

Evidently, the faint monoclonal band that is there is par for the course.

Still, I won't be happy until it is gone.

More Velcade, Rev and Dex on tap and I'm very, very happy about it.

Thanks to all for your prayers and positivity -- it's been quite an afternoon. I'm off to elevate my liver numbers with some wine.

Ruh roh, Raggy.

Who knew that there would exist such a perfect and pithy phrase, courtesy of a show about a talking dog and featuring a beatnik / yippie -- voiced by Casey Kasem, no less -- who shared an interest in what was an obvious metaphor for pot brownies (really, you're going to tell me a Scooby snack is anything else?), to convey my sense of dread?

Long story short, just returned from weekly Velcade. Platelets are in the 120s which isn't great. PSA appears normal although it is higher than zero, which my friend Dr. BM will probably tell me is a bad sign.

The real issue, though, is the data back from the immunofixation test, which reads as follows. "A faint IGG (lambda) monoclonal immunoglobulin is detected."

My head tells me that this is either test noise or only part of the picture (if there are other bands then we have an oligoclonal situation which is a positive sign). My head tells me that I wouldn't attain CR and then lose it six weeks later while the affects of my two transplants are still within 100 days. My head tells me a lot of things.

My heart, on the other hand, is quite concerned.

I have faxed all of the lab information to the irrepressible BJ, BB's chief of staff, and I'm awaiting the good doctor's thoughts on it.

I will obviously post the news as soon as I have any. Please keep your prayers and positive thoughts coming -- this has to just be a meaningless little hiccup...anything more and it's not a good situation.

All I can say right now is "zoinks, Scoob."

Lost in Translation, and the Importance of a Pillbox

Happy Tuesday, folks. Tuesday is Velcade day in these parts. Which means it's also Dex day. I don't like Dex days but they're a necessary evil! I'm fortunate, again, that I don't have the anger / anxiety side effects of Dex. I've been in physical therapy, though, and let me tell you the muscle-wasting effects of Dex are an issue based on how much I hurt! :) Hopefully I can do enough to keep the atrophy at bay.

Maintenance therapy involves a lot of "supportive care" drugs, not just the "big three" of Velcade, Revlimid and Dex. Mine are:

* Baby aspirin, to ward off deep vein thrombosis from the combination of Rev and Dex

* Pantoprazole, to counteract the esophageal problems that Dex causes

* Acyclovir, to help my compromised immune system fight off the flu

* TamiFlu, for the same reason

* MetaNx, to keep peripheral neuropathy at bay

* Alpha Lipoic Acid, for the same reason

* Ambien, in case I can't sleep on Dex day

* Zometa (by infusion) to help fill in all the holes in my bones

* Testosterone (by injection) for general mojo

There's a lot of room for "pilot error" in all this stuff. and there's also room for transcription error. I remember one time during my initial consult, where I was debating between doing Total Therapy in Arkansas versus Los Angeles, BB had dictated "patient will return to Los Angeles and determine where this whole deal is going to happen." And the transcription came back "patient will return...and determine whether this ordeal is going to happen." :)

So among other confusions, which I have now cleared up:

* I was taking only one aspirin a day; now I will take two

* I was taking Acyclovir only once per day; now I will take two

* Dr. GD's office thought I would get Zometa each month; it turns out the one infusion is all BB wants

* BB's notes were transcribed as taking 15mg x 20 days on Revlimid, followed by 4 days of 5mg. This is just flat-out wrong. The proper dosage is 15mg x 21 days, with 7 days off.

This is a lot of pills! So that daily pillbox that I put to good use during therapy (I recall one day counting the number of pills I had to take and noting that there were more than FORTY of them) will be brought back out!