Home > Jim > Busy moring, busy week and lots of changes ahead

Busy moring, busy week and lots of changes ahead

It’s hard to know where to start.  I’ll try it chronologically.  Somehow food is able to stop Jim’s headaches (no one understands why this works), so we were up most of last night so Jim could eat something substantial every two hours.  For now, this is just something we are going to have to do because it works.  He was still taking pain medicine every 4 hours, so that when and if he got a headache, it wouldn’t be too bad.  Plus, he started taking 8 Xeloda chemo pills today.  And we can’t forget the steroids and anti-nausea medicine either…

When we got to Dr. DeLeon’s office for Jim’s lab work, I promptly told one of the nurses our problem.  She emailed Dr. DeLeon and he said he wanted to meet with us after Jim’s echocardiogram.  Of course, that made us nervous.  The echocardiogram went well and we will get the results from Dr. DeLeon next Monday.  When we got back to the oncology office, we only had a short wait before we saw Dr. DeLeon.  And then, the meeting started.

I think I should do this as a list:

  1. Dr. DeLeon said he was very nervous about giving Jim any more of the Oxaliplatin because of Jim’s seizure and subsequent headaches that day and now.  He wanted Jim to see a neurologist this week, so tomorrow we are going back to Fredericksburg for that appointment.  He wants to be sure that Jim has anti-seizure medicine, if needed, and more help with the continuing headaches. 
  2. Jim had the echocardiogram done today to be sure that the Epirubicin hasn’t harmed his heart because Jim is at the end of how many times he could use it.  (Although, they were going to keep going if the Oxali hadn’t acted up.)
  3. Dr. DeLeon suggested that because of the above two problems, Jim should go ahead and switch to two new chemo drugs, Cisplatin & Taxotere.  Neither one affects the nerves, but the Cisplatin creates more nausea.  And, Jim “gets” to keep taking the Xeloda.  Dr. DeLeon also said that sometimes new drugs can work better than the old ones because they are new to the body.

We are excited about the changes.  Hopefully, Jim can feel a little better while still fighting the cancer.  One of the bigger shockers for us is that the infusions will be every other week, instead of once every three weeks.  I gave Jim a high-five on the way home because he made it to the end of the Oxaliplatin/Epirubicin chemos.  When we were first asking how long we could take the chemo, Dr. DeLeon nicely told us that it was a long way out and we didn’t need to worry about it.  At that time, he didn’t think Jim would make it anywhere near the maximum chemo doses.  Jim loves not being normal.

Jim is so excited that he’ll have that darn feeding tube finally removed on Thursday.  This feeding tube was tiny so they had to sew it to his skin in two places to hold it in.  Well, one was pulled on so many times it finally broke through his skin, and the other one is “hanging on by a thread.”  ha-ha.  He also should be given clearance to pick up heavy things again.  Sarah and he are going to have an absolute love fest!

We are really looking forward to this weekend.  We will finally meet Mason, our 2 month old nephew!

Sarah Story:  Jim’s dad came over early Saturday morning to help me with Sarah because I was desperately trying to manage Jim’s headaches.  He decided to take Sarah for a walk.  Well, as it turned out, she walked him – straight to the park.  Then, when it was time to leave, she wouldn’t budge.  So, Helen got a phone call (and I’m laughing as I write this) for me to come to the park to come pick them up!  Boy, does Sarah know what she’s doing or what?  😉

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