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.