We spoke briefly with Dr. Ansari and just reviewed that things are going according to plan. I gave him two names that a high school friend provided for me from Johns-Hopkins and he told me to hang on to them. He also said that one liver specialist at IU Med Center in Indy did his training at Johns-Hopkins, which lead us to believe that he is leaning towards IU. Perfectly fine with us, but we are still keeping our options open. Whoever is the best match for Johnny will be the one doing his surgery. End of discussion.
Johnny's port continues to plague us with issues. Although I have resolved myself to the fact that it is never going to be a thing of beauty, I don't want it acting up. For the last two chemo infusions, the nurse has had to flush it several times, lay Johnny flat on his back, raise his left arm above his head while he whistles the theme from Love Boat, just to draw labs from the stupid thing. It always flushes just fine, but drawing back on it causes issues. Today they had to take his labs from a vein and not the port. They put something in the port called "Cath Clear" or something to that effect. That is supposed to remove the protein buildup at the end of the catheter. Once she did that, of course, she could draw back on it with no problems. Whew.
I was getting a little agitated and had to walk away while she was attempting to clear the port. My frustration stems from the fact that ISN'T IT ENOUGH THAT HE HAS CANCER AND HAS TO HAVE CHEMO AND HE REALLY DOESN'T NEED ANYTHING ELSE TO GO WRONG, ESPECIALLY FROM THE STUPID PORT THAT THEY PUT IN TO MAKE THINGS EASIER. . . yeah, so I just walked around for a few minutes until the labs were drawn and I could speak in lower case letters again.
The nurse brought us a copy of the labs as they were completed. The so-so news is that his platelets continued to fall. This week they are only 116 (down from 128). We asked how low they have to get before they will not let you have your treatments. The nurse told us at about 10 they will send us for an infusion of platelets and we would have to wait for treatment until the number came up. TEN? Holy moly -- I quit worrying right there. We have quite a ways to go before that. I'll just continue to pray (and ask you to do the same) that they don't fall too much more.
All of his other labs were quite good actually (considering they weren't fasting labs). One of his lab values, however, was SPECTACULAR! Remember a couple weeks ago I talked about the CEA level (cancer lab)? When Johnny was diagnosed it was 60.4. A couple weeks ago they drew it and it was 34.1. Today, just two weeks later, it was . . . . . drum roll, please . . . . . 13.8! That's right!
THIRTEEN POINT EIGHT!
That is less than one-quarter of the original lab value. I think we are moving in the right direction, folks. And now, more than ever, I am soooooo anxious to see what the next scans will look like. Actually, I haven't seen the original pictures. Can you believe it? Me, the x-ray tech-by-trade, hasn't even viewed the images.
To be perfectly honest it is because I was too scared to look. I didn't want to see the evilness that was living inside my Johnny. Now that I know something positive is happening, I want to see the next set first and then the first set after that. That probably sounds really weird, but I want to know where we are before I see what we started with. Coping mechanism? I think so.
Johnny feels relatively good for a dude on chemo. He continues to have the cold sensitivity. That is actually getting worse and lasts the entire time. It finally starts to get a wee bit better over the weekend before he has to start chemo again. At no point is he able to reach in the freezer and pull something out. Too painful for his hands. Today, when he got home from the infusion he had no shoes or socks on and found standing on the wood floors to cold for his feet to tolerate. He couldn't drink the Gatorade that was sitting at room temp, either. But, really, in the grand scheme of things, if that is as bad as it gets, then we are doing pretty well, dontcha think?
He just mentioned that his tummy is getting a little upset right now, so I am going to get him his meds and put him to bed.
Please pray for him. Although things are going well, I still worry like you wouldn't believe. I just really want this cancer crap to be over as quickly as possible.
Pam--I know this won't help ease your fears but that dropping platelet is common, almost expected. My mom's couldn't have gotten any worse...they skipped a week or two of chemo, but they never had to do an infusion but were almost positive they would, even if they skipped a round. It is still creeping back up to the normal range months and months after chemo so don't be surprised if Johnny's continues to go down. With that lowering CEA, that s#$% is working!!!!!!! Great news.
ReplyDeleteMolly
Hey Spunk-do you think he has a fibrin sheath? We use Cath-flo activase in specials all the time, which is probably similar or the same as that Cath Clear stuff. Either way, if it's clotted-it usually does the trick. If it's fibrin, though it usually flushes, but you can't draw back. It kind of sucks back over the end of the catheter. When we check ports we call it a dye study down here (in Nowhere, USA!)and just use contrast under fluoro. What size Huber needle do they use to access it? Where exactly is this thing placed? Congrats on the CEA-looks good! Wish we were there or you were here-do they realize just who you are at that place??!! Take care buddy. Love you and miss you-Spunk
ReplyDeleteWell what do you expect from the HUGE can of whoop booty that was opened when we first found out. Plus as you call him butt smokin hot cancer doesn't have a chance to survive.
ReplyDeleteLove you,
R, C, and the Little G
Spunk needs to speak English. My University of Google medical degree must be lacking.
ReplyDelete: )
Spunk,
ReplyDeleteIt was Cath-flo they used, I just couldn't remember the name. His is in his left subclavian, but I don't know the size of the Huber they use -- never asked. I'm sure it is fibrin, since they could flush just fine and not draw back. They did tell us that as long as it flushes it can be used for infusion. Just sucks that they can't draw labs. Maybe it will be OK next time. I hope.
Why don't you guys take a little trip this fall and come up here? We would love to see you guys!
Love you bunches,
Spunk