Another day at MD Anderson

8/10/09
Marc had his second round of IV chemotherapy today at MD Anderson. We had to be there early to have lab drawn and the chemo wasn't scheduled until 3:30 this afternoon. All went well until about an hour after we checked in for the chemo. The clerk came out and told us that Marc would have to come back tomorrow for the chemo because it had only been 13 days since his last dose. I told her that I wanted the Dr. called because if his blood work came back OK there was no reason to wait another day. She paged our oncologist's nurse. When she called back I told her the same thing, that I saw no reason that Marc could not have the chemo today; especially since she had told me his labs were entirely normal. She said that the oncologist and is nurse practitioner were both on vacation and she would have to contact the covering physician. About an hour later the nurse called me back stating that the covering physician agreed that it was OK to have the chemotherapy. Everything just seems like such an ordeal, nothing is simple.

When we got back to the treatment room, Marc tried to lie down on the bed (actually a modified cot). His feet hung at least a foot over the end of the bed! When he elevated the head of the bed, it bent at mid chest position instead of at the waist. He just couldn't handle it as any position made his abdominal discomfort worse and there was no way to get comfortable. While trying to change positions he pulled out the IV and it had to be restarted. Fortunately they got it in. I finally got him up in the chair and he was more comfortable. Of course being in such pain, his blood pressure rose. As elevated BP is normal with the Avastin, the nurse was hesitant to continue the infusion. I had brought extra BP medication with us as the same thing happened the last time, and gave Marc the medication. The nurse called our oncologist who told her to go ahead and complete the infusion, that I knew what to do and it would be OK. So the infusion continued and went well until about 15 minutes before it was to be complete. Marc started having more abdominal pain and insisted walking would help. So with the nurses blessing we walked. His BP was still high but Marc was doing OK so we completed the infusion. We got home had a late dinner and now Marc is resting now and we are hoping that the future chemo treatments are less eventful.

8/11/09
Marc had a little better night last night and then a dentist appointment this am. Of course his BP was up again after he sat there waiting on them to start his cleaning (they checked it after performing all of the X-rays). I again gave him some BP med and he rested while I got my teeth cleaned. By the time I was done and they got ready to start on Marc again, he was so uncomfortable that we had to reschedule the cleaning. We're home again now and he is resting. I am going to check his BP again soon and hopefully it will have gone down.

We are scheduled to go back to MD Anderson for his pre-placement consult for the portacath on 8/21. We still don't know when they will do the insertion. They have added anesthesia consults to the appointment lists so I suppose they will have to coordinate the insertion between anesthesia and surgery. Again, can't anything be simple anymore???

The care we get at MD Anderson is wonderful and we are very appreciative that we have the means to afford his treatment there. Had we stayed with the original oncologist, Marc would have been on the standard treatment with less chance for survival. This way we feel we have the best chance to "Beat the Beast".

Thanks to all who have given us the support and prayers, they are appreciated beyond words. I will try to post again next week.

Some good days, some bad but hanging in there!

It's been awhile since I posted anything so I will try to review the last 2 weeks now.

We went to MD Anderson for Marc's chemotherapy as scheduled but when we got there Marc was having such severe abdominal pain that they sent us to the emergency room for evaluation. After 24 hours there with lab, X-ray and CT scans they decided that Marc's problem was severe constipation. I know, we always knew he was full of it but now we have proof! The repeat CT scan did not even mention the umbilical hernia! While in ER it took 2 doses of IV dilaudid (a powerful pain medication) to relieve his pain. They discharged us at 9:30 the next morning and scheduled Marc to get chemo that afternoon at 5pm. They also gave Marc a prescription for morphine tablets to help with the pain. When they got ready to start the chemo, Marc's blood pressure was extremely high. Because the one of the side effects of the chemo is elevated blood pressure, they would not start the chemo until his BP was down. They had to call the nurse practitioner to come up to see him and gave him medication to bring down the BP. After 2 hours his BP had gone down enough to start the chemo. He tolerated the chemotherapy well and finished up a little after 10pm. So after leaving at 6pm on Sunday for an early Monday morning dose of chemotherapy we finally got home at midnight on Tuesday morning. We were both exhausted to say the least.

After we got home we started aggressively working on resolving the problem with constipation. It has not been pleasant for Marc and he is still having episodes of severe pain. But the episodes are getting fewer and further apart and less severe. They no longer bring him to tears but he still gets very uncomfortable. He has been a trooper through it all. The morphine was not controlling the pain so the Dr. prescribed a fentanyl patch which he changes every 72 hours and he takes the morphine for breakthrough pain.

The good news is that his speech has improved a little since getting the chemo. We were told that the chemo would decrease the inflammation in his brain and the improved speech is proof that this is happening. We are also starting to reduce his steroid dosage and hope to get down to 4mg of dexamethasone a day as a maintenance dose. I've now got him down to 8mg a day now with no troublesome side effects. That is very encouraging.

We return for the second dose of chemotherapy this Monday and are hoping that this trip to MD Anderson will be uneventful. Marc is now scheduled for his consult for the insertion of the portacath on August 21. They also scheduled him to have lab drawn that day so I don't know if they will do the procedure when we are there or schedule us to go back at a later date for the insertion. I am hoping that they can get everything done while we are there.

As you can see from the pictures, Marc still has his wonderful since of humor. He loves life and loves his family and we love him dearly. It is so difficult to see him suffer and we pray every day that the suffering will stop and he will heal.

I have returned to work 2 1/2 days a week now and have hired a home caregiver to stay with Marc while I am gone. They are very expensive so Steve is staying with Marc one day a week to give me a break in the expense. He is able to work from home so he works while he is here. Marc isn't thrilled about the home caregiver but does enjoy spending the time with Steve.

I will try to post more later this week after Marc's chemo is completed. I apologize to not posting regularly and will try to do better in the future.