Long day at the infusion center yesterday, with a lot accomplished.
Johnny is having a really hard time anticipating Chemo Monday’s. It has gotten to the point that by Sunday night, his head has taken over and he is vomiting at the mere thought of chemo the next day. By the time we arrive at the infusion center and have his port accessed, he is a sick mess. We have talked a lot about this and he said he thought his body was just really getting tired of chemo. I told him I thought his body was probably just fine, that it is his mind/head/heart that is tired of chemo.
Our discussion with the doctor initially centered around Johnny’s liver labs. They are not good. As a matter of fact, they are getting worse. We had talked about this before our appointment and had decided that we didn’t care what the labs were at this point, we wanted to start using the HAI pump. We told this to Dr. Ansari, and he agreed. We know Johnny has liver cancer; we know it is aggressive; we know that we need to get in there and do whatever we can to address this mess. We told Dr. House in Indy that we wanted to be as aggressive as possible in response to the cancer. Since the liver enzymes have failed to go down, we thought it was time to fill the pump anyway and see what happens. We didn’t really feel like there was any reason not to, and certainly no other real options at this point.
We also talked about Johnny’s issues with chemo anticipation. It has become a pretty serious issue. So much so that Sunday night I slipped Johnny some of my anti-anxiety medicine just so he could get some sleep. I asked him in the morning if he was able to sleep, and after he said yes, I confessed. I know how well it works for me, so I was very happy that it provided some relief for him, too. Johnny has started on yet another medicine to help with the mental issues that go along with this chemo/cancer crap. I am actually taking the same thing, so I know it will help him. Better living through chemistry, right?
Then our discussion turned to nausea control. It has been a difficult thing to manage, and so random. We have yet to determine a pattern to his good days/bad days. This was a good lesson for us, because it seems that if you ask enough questions, there is always a pretty good solution. There is a cream called HABR that the Mar-Main Pharmacy in South Bend makes (also available at Merrill Rx in Mishawaka). It contains Haldol, Ativan, Benadryl, and Reglan. Yumm-o. Good stuff if you are severely nauseated. It is applied to the back of the knee, wrist, or elbow. They recommend the back of the knee so the patient can’t smell the stuff, even though it isn’t too bad. No sense in adding to the nausea. They also said that instead of using the Ativan prn (which means “as needed”) he should basically be using it around the clock. Ativan is an anxiolytic (anti-anxiety) with the added bonus of helping with nausea. Two for the price of one!
Once he was hooked up and receiving fluids (yes, I asked for a least a liter and a half) they gave him his regular anti-nausea med (Aloxi). Once they started infusing the CPT-11, the Aloxi wasn’t enough and they added IV Ativan. Good stuff. The vomiting stopped and he was asleep in about 60 seconds, no kidding. He slept through the remainder of the chemo (more or less) and woke for the official Filling of the Pump. There was really nothing new with that, because he has had it emptied and filled the last three times with heparinized saline solution. We were so happy when the FUDR was pushed in to the pump knowing that there is something infusing each and every one of those @#$%^ !@# tumors with toxic chemicals. Take that! I visualize that Musonex little green monster guy commercials when I think about it. If only it were that simple.
Last thing on the agenda before heading out the door was his monthly Sandostatin shot in the booty. He hates needles so much, and this one is a doozy. Plus, it is like pushing maple syrup into his butt, because the liquid is so thick. Poor thing, it really does hurt. I checked out the butt-smokin’ hot booty myself this morning, and it has a little bruise. I kissed it and made it all better. (Ask Quinn - - - I totally grossed him out!)
With all the added meds to our arsenal, last night wasn’t too bad. He had restless feet (from the neuropathy) but once they settled down, he had a decent night. Today (without jinxing it) has been decent, too. He was up for a good portion of the mid-morning, but has been asleep since about 2 p.m. and will probably stay in bed for the night. I keep loading him up on the meds, hoping that it will keep the vomiting away.
Johnny is a strong guy and will keep fighting this nastiness as long as he needs to. It is so hard to have the “what if” conversations, but we know that it would be really irresponsible to not talk about potential outcomes. We are both intelligent enough to know that it is better to plan for the worst and hope for the best. With that in mind, we have had some very serious conversations lately. Sometimes he initiates the conversations, sometimes it is me. More often than not, we both end up crying. Keeping in mind, always and no matter what: we will never give up. Even though it is so hard to talk about some of the issues we are facing, we can usually come up with solutions (even if they might only be temporary) if we talk them out. That is my point here: talk. The worst thing would be for each of us to carry our burdens in silent, not including the other. I worry about him as much as he worries about me. Talking makes it real, but it also makes it seem so much more tolerable when you have shared it with the one person you love more than life itself.
Neither of us can see the future or predict the outcome to all of this, but I can tell you one thing: I will love him forever.
