A couple of long days

Hi folks,
Sorry, not much time for musings these days. We've had some challenging days since the weekend. Robin had been taking Dilaudid for pain the last few weeks, but it was no longer working for her. She was having increasing pain and confusion. We changed to a new pain medication (methadone) Tuesday night. It was a bit of work to make the change but Robin's doing much better now. She's comfortable, her pain is in control, and although she's still sometimes confused it is more cheerful than some of the paranoid confusion she was beginning to experience on Dilaudid.

Here's are excerpts from some "inter-family" e-mails the last few days which can give you a sense of what we've been up to:

-----------------------------------------------------------------
Tuesday, January 30th, 8:53pm - e-mail to family

We had a busy day with the hospice folks in-and-out of the house all day long.

Robin's pain level has escalated significantly over the past ten days. The first seven days on the pump she went from 1mg/hr of dilaudid to 2mg/hr. Sunday night she went to 2.5 mg/hr and then yesterday over the course of the day she got ramped up to 4.0mg/hr. This morning the nurse put her up to 5mg/hr. This was all because Robin's pain kept "breaking thru".

This afternoon the nurse explained that the increasing pain was either from progression of the disease, or because the pain medication wasn't the best one for Robin - or maybe it's a little of both. Given that, the nurse also noted that we have seen significant changes in Robin's abilities over the past couple of weeks, so the disease is certainly playing a role. The tumor on her right jaw is growing noticeably larger every couple of days.

The nurse noted (in a discussion with Robin) that with the increasing medications will eventually make her too groggy to converse with folks. She suggested that if there is anyone Robin feels she needs to talk too, then she should make arrangements to meet with them soon. I'm sure we would have had more people visit in the last few weeks, except Robin kept insisting that she didn't want visitors, she wanted time to get her strength back.

The hospice folks did make a change in her pain medication today. They replaced the Dilaudid medication with Methadone. They noted that this should provide equivalent pain relief, but at higher doses it should make her less groggy. They didn’t explain how much more time this would give Robin to be able to converse clearly. Right now she is pretty confused. She keeps thinking there are other people in the house, and sometimes she mumbles sentences that don't seem to make much sense. Over the next couple of days we'll see if the new drug helps make her thoughts more clear.

I've been on the phone a lot today. If you have any questions feel free to call my Dad's cell number too. I'm really not doing well at keeping up with either e-mail or voicemail. Mostly just catering to Robin at the moment.

Peace


-----------------------------------------------------------------
Wednesday, January 31st, 6:15pm - e-mail to family

We had a very long day today, but Robin is doing much better than yesterday.

Last night she was switched to methadone. I stayed up most of the night and gave her oral pain meds every two hours to make sure she didn't "get behind" and accidentally get into some serious pain.

For some reason her pain peaked this morning around 10am and she needed an extra stiff dose of the oral meds. Around noon the hospice folks kicked up the volume on the methadone pump.

Since the increase went into effect she's had a much more comfortable afternoon. We seem to be able to keep ahead of the pain once again! On the methadone she is a little confused still, but in a happier way. This afternoon she looked at a lump of blankets on the bed and she asked me with a smile "who's under those blankets?". I said "No one". She asked me again and I said "no one" as I pulled back the blankets to show her. Robin smiled and accepted my response. She seems pretty happy now. Though she still has had some pain, it definitely seems less severe!

I finally took a nap around 4pm (after constant urging from Mom and Dad)!