Was the timing the same?

Today is Day 5. If you'll recall from Temodar, Day 5 was one of the worse days for energy. And for CCNU so far? Yep, today was not so great. I woke up with the slightly spiny head, but somehow thought that if I made it to work, I could push through the day back to normal. About halfway done to work on the train, I was told otherwise. So I headed back up and rested out the remainder of the day. I'm really hoping that the worst day is behind me, since the weekend is starting tonight!

Note: This is not actually a final conclusion as to whether or how CCNU might influence my energy. One scientific experiment does not prove a result! In fact, one other theory I have, and hope it ends up disproven, is that the spinning feelings are directly related to increased tumors spreading near my acoustic neurons. And yeah, let's not think about that....

Here we go

Last night, for the first time, I took the CCNU. Given absolutely no prior experience, I have no idea what to expect. So far it's been pretty ok. More to come....

I swear I used to be able to spell!

 And here's the proof! My prize from winning the contest in elementary school.

In fact, I came in 6th place in this event. Only missed one specific word that, when initially presented during practice, had been read with a mid-western "accent". Thus it was unrecognized during the actual competition.

Now I rely on the trusty Google for correcting my typing, though I must say, occasionally it has its flats....  

Current Status...and Advice

I'll admit, my recent optimistic posts were always filtered through rose colored glasses. This time, it's no longer possible. Some of those "possible" tumors have actually continued to grow. The other areas have become stable, but in general the cancer has spread, albeit slowly, into lots of different locations. Some growth has even shown itself on the right side of the brain. There aren't a lot of choices for treatment. From what I can tell right now, the options are simple: stay with Temodar, but shift to a more consistent schedule where I take it every day for 6 weeks at a lower dosage, or; switch to CCNU with the hope that the areas still growing through the Temodar become hammered by the old school chemo. Of course, the best stuff is not held until the end. The best stuff is offered first. So you see, these choices are not particularly enticing in general. This makes it difficult to get excited. There is, of course, some hope. But more to the point, and more towards reality, I am hoping to enjoy whatever it is I have remaining. Taking a drug that will make my life miserable does not fit the bill. Especially since there is so little evidence in this case for misery to lead to a long life.

That said, it is still not entirely clear which of my options will reduce the misery and allow the most enjoyment I have left, whatever that may be. They each have there negative side-effects, and from what I've read, the risks move all over the place. So there, dear readers, is the moment I could certainly use some advice. You have the two options available. I'll be curious to hear your opinions.

Rough Chemo Week

Do a few bad events indicate a trend?

Eh, not really. To calm those concerned, basically my MRI report today was pretty good. I have to add the caveat that lately it doesn't take much to earn that rating, compared to the older days.

But first, the beginning. I headed out to my MRI location early, with the hope that they would pull me in a little early, thus guaranteeing that I'd be outta there in time to meet my appointment. Eventually, after my actual scheduled appointment, I was ushered in.

As usual, I needed to sacrifice a vein for them to pump in contrast during the MRI, but this time, the location chosen struck a nerve in me, literally! My entire body was shaken and electrified and yes, it hurt like $@!#%^@! The first finger of my left hand remained numb, and there's actual still a little wart like bump where it's most numb.

After the MRI, while headed to my appointment, I get a call from Aetna. They are now in charge of getting my medications to me (as in, they will send them to me, so I am NOT supposed to get them from a pharmacy). They ask me where I had my "extra" order for the anti-nausea sent last month. I tell them I did not place an extra order. They ask my where did I have it sent. I tell them I did not have that happen. They ask me where did I have it sent. Do you recognize a pattern? At that point, I pretty much lost it and told them that this is NOT my issue, and the whole reason they exist is to deal with these kinds of things themselves. They should know this, and if they do not, they should contact my doctors (for whom they have the contact information). They should NEVER bug a patient, especially when they are headed to a doctor's appointment to receive the news as to whether he's doing well or in serious trouble. Ironically it seems the whole "mistake" was their own fault. I got this from a message, but I will be checking in further tomorrow....

Once I got to UCSF, I was told that my regular oncologist's wife is having her baby, today! So that's great news for them, but it also meant that I'm getting a sub as my doc. The docs there are all great, so I wasn't too concerned beyond the fact that in general you get used to and begin to appreciate one person's approach, and taking on a change from that when you're dealing with some serious issues adds complexity. Needless to say, even after some gaps in communications and understanding, all came out well in the end. The information is basically moving in the right direction. The decisions for what to do at this point had already been made by my regular doc, and I trust it relative to the overall concerns I had in my conversation with the sub.

Where does this stand now? Well, I start my next Temodar this Thursday evening, then I get another hit of Avastin on Friday. Likely another sore throat (and hopefully nothing more than that) this weekend. Exaustion next week. And finally recovery next Thursday or Friday. And who says I don't make plans?

Let's do the numbers

I'm saving this...for you!

Yes, you. You who have mentioned how good I look with my current hair color. You who are impressed that I was able to "pull this off", for free! You who think there must be some way to "milk" it. I'm saving it for you, dear viewers, both past and (briefly) future, so it will never disappear. In the digital sense. For you know that once I cut enough of my hair, it will never be coming back like this again.

It could be better...

...but it could be worse! Today was the "two month" appointment to see how things have been going, or...er...how things went. And when given a "two month" hiatus, one often becomes hopeful for reaching a temporarily stable path. As it turned out, one of the "blobs" showing in the MRI from May went for a repeat performance. About the same location, about the same intensity (or a little less). My initial reaction was, obviously, not thrilled. But after discussing it further with Dr. B and thinking about our initial attack on those tumors, I actually felt pretty ok. Here's the explanation:

For my initial treatment using Avastin, Dr. B took the approach to deliver it only once, and then watch and see what happens. The logic for this approach, to which I strongly agree, is that you don't want to load the system with a drug that the enemy will eventually learn how to defeat. It's similar to using far too many antibiotics to treat other diseases. When humans tend to take them when they aren't needed, they unintentionally create a "Super Bio", no longer able to kill with the original weapon. Dr. B did mention long ago that there was a chance it might recur, but if that were to happen, we could hit it again with more Avastin. In fact, back in May he specifically mentioned that "It wouldn't be very surprising for at some point in the future...4, 6, 8 months...to have some measure of rebound...." And we are currently at? Yes - 4 months. This led me to thinking, what if I could simply take the Temodar every month and add an injection of Avastin every 4 months, and all my cancer would stay dormant? That would not be a bad way to survive.

So at this point, I will get another hit of the Avastin this Friday. I will likely stick with the Temodar approach for another cycle, unless the Tumor Board has a very strong opinion otherwise. As for the rest, no other previously exposed tumors showed up again in the latest MRI, and that makes for some good news.

Color me silly

When we last saw Logan, he was showing a "bleaching" pattern taking over his whole body. Maturity? Stress? Well, fellow Avengers, this pattern was caused by the evil and lazy cancer drug villain.

But wait! Could it be?!? Is this our same hero Logan, fighting off the evil Doctor Bleachmeister?

Hurray! Hurray! But wait....has he really finished off the Bleachmeister? Stay tuned....