Wednesday, April 30, 2008

Near CR

Euphemisms. Funny little things. Once upon a time, euphemisms were only used to make unpleasant terms more palatable. Now they're used to keep people from thinking or expecting too much. They seem to be created by people who really don't want to commit be be direct and well defined. I think they're the spawn of marketing think-tanks and legal departments.

"Let's not tell them the product is 'good', because 'good' is subjective. Let's tell them it's 'better' because 'better' can be proved in court."

This week's euphemism? "Near CR", or "near complete response". What the hell does that mean? Technically, it seems to mean that a patient's drugs have been nearly as effective as one might hope they could be. If we boil that down a bit, it means the patient's disease has been severely minimized, or the patient is "in remission".

But of course, we can't say "in remission" because patients apparently jump to the conclusion that they've been cured.

REMISSION: From the American Heritage New Dictionary of Cultural Literacy, Third Edition:

A period in the course of a disease when symptoms become less severe.

Note: The term remission is often used in speaking of sufferers from leukemia or other cancers whose symptoms lessen or disappear. In such a case, the disease is said to be “in remission.” The period of remission may last only briefly or may extend over several months or years.

Ok, so what's this really all about? I saw the doctor today. He looked at my blood numbers and announced I was in "near CR". The cancer can still be found, but the numbers are so low as to be unquantifiable.

I'm in remission because the cancer has nearly completely responded to the drugs.

Crap, now I'm gonna have to start paying attention to my health....... Lose some weight, watch my cholesterol and blood pressure, get some exercise. Live again.

Thursday, April 24, 2008

Rash-onal behavior

The rash is subsiding. The itch is dissipating. But the dry skin is proliferating everywhere the rash has been. If I rub my forehead, there's fallout. If I take off my shirt, there's a cloud of skin particles that fill the air. YUCK!

In my mind, this is proof that I'm reacting badly to Revlimid. Unfortunately, my hubby "Mr. Science" wants me to go back on Revlimid for a few days to see if the rash reactivates. He cites true scientific procedure as the basis of his request. He wants proof, not supposition. Further, he cites a research paper that concludes patients get better anti-cancer effects if they get a rash while on Revlimid. Ok, one measly research paper with two authors. It's basically a study of patient records. There's mention that two patients had rashes severe enough to warrant taking them off the drug.

"Frankly, Scarlet, I don't give a damn!"

Let's just consider me one of the patients who had to be taken off the drug. Let's also consider me someone who doesn't want to go back on Thalidomide. We'll see what happens on the 30th.

Have I mentioned that, in general, cancer sucks?

Wednesday, April 16, 2008

Acting rashly.

I saw the oncologist today at 1p. When the PA walked thru the door, she stared in disbelief. She got the doctor. His first words were, "Oh my god, look at you!"

Yeah, the rash is BAD. It itches. It's everywhere. Everywhere. Yeah, there too.

Result? I've been taken off Revlimid. It's been replaced with nothing.

Now let's think about what that really means..... It means I'm not on chemo as of 2p today. No chemo = no cancer control. No delay. No reduction in symptoms.

I have another appt with him on April 30th. We'll assess the rash again. We might shift me back to Thalidomide. We might not.

Pick one from Column A, one from Column B. No substitutions please.

Saturday, April 12, 2008

Rash decisions

You may recall a minor entry that described a rash I've been dealing with for some time. I saw a dermatologist who prescribed a combination of topical steroids for the condition. The rash got worse.

I had an appointment with Dr. B. We were having a conversation with his PA and she mentioned using Eucerin Aquaphor since the rash was accompanied by lots of dry skin. Bingo! The PA was right. The DR was wrong.

And so, last week was the nadir of the rash. No itching, no new spots, no powdered skin when I took off my shirt.

But 2+2 didn't make 4 in our little heads. See, I've been on new chemo for a while, and last week was the "time off" for dosing. The schedule is 21 days on, 7 days off. (Rinse and repeat)

To put it simply, the dry skin was resolved with the Aquaphor, but the itchy rash went away while I was off chemo. Guess who's been back on chemo for the last 3 days. Guess who's had a rash for the last 2 days. Guess who woke up this morning looking like he'd been punched in the face and then stung by bees. Guess who is NOT HAPPY.

What the heck. Just call me Spot.

Monday, April 07, 2008

Collection and freezing.

The word from the SCCA is that they will not collect donor stem cells and freeze them for later transplant. Bummer.

That leaves us with two options:

1) Do the harvest and transplant in a few short months.
2) Wait until it's a requirement and hope the donor is still suitable and willing.

Heads or tails?

Thursday, April 03, 2008

Calcium count

I got a call from the SCCA today. There is a "problem with my calcium levels". They want fresh blood tests tomorrow at 1:30.

What does it mean? Most likely, the counts are high. Two potential causes come quickly to mind.

1) I drink a heck of a lot of milk.
2) The cancer cells are dissolving my bones again.

Yeah, it's SO much fun.

Wednesday, April 02, 2008

The SCCA and Dr. B

We saw my oncologist today. He wasn't up on the facts as far as our good luck with finding a 9+ donor. The reaction to the good news was simple: "That's a great find. You probably can't find better!"

We were pleased to hear that. It means we're on the same page as far as selecting this particular individual.

Of course, there are complications:

1) The SCCA is requesting searches on an additional 15 individuals. It seems odd if we've already found the golden egg.

2) I'm on maintenance and would like to delay the transplant. Unfortunately, general policy states that they won't harvest from a donor and then freeze the cells.

A) This means I have to do the transplant now, or:
B) Stay on maintenance until it stops working, then hope/pray that the donor is alive, healthy, willing, and hasn't already donated before. (Apparently they only use them once.)

So we ponder the new options.

1) Searching for 15 more donors would give us a larger group of individuals who might donate in the future. We can at least put the names in reserve if we can't put the actual cells in reserve.

2) Waiting on maintenance to fail can be a sudden revelation. If my blood numbers suddenly spike in a month, it would be ideal to have done the transplant in the prior month. I don't have a time machine.

3) Doing the transplant right now, even with the golden egg, isn't something I want to do. If I'm gonna be really sick or die, this isn't a really good time. It would be far easier if we were settled in Canada.

Ponder, ponder, ponder.