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.
Wednesday, October 31, 2012
Saturday, October 13, 2012
Tuesday, October 2, 2012
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?
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?
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