Maggie’s breathing is growing more and more labored daily. Nights are sleepless and even basic things, like getting out of bed to get dressed, have become tough tasks. And we just can’t seem to get the pain bit under control. So, midday Saturday I called Dr. Loukas. Fortunately, he was taking after hours calls. We talked for a while and he laid it out very clearly – we’ve got a very, very tough road ahead of us. He said the only relief he could offer was to get her some oxygen and to increase her pain meds. He also made it pretty clear that he felt going back to MD Anderson or anywhere else was not going to help us now. After we got off the phone, he called Hospice and they sent over a nurse.
Hospice care does not mean we’ve given up. In fact, we can leave their care any time we should chose. What they provide is more options for us as we continue on. They have an alternate emergency room we can use (which is wonderful because the ER sucks.) We have 24 hour access to both doctors and nurses. Dr. Loukas even told me that they are there to help me as much as they are for Maggie. I’m not sure what that means but I’m sure it will play out.
The Hospice people brought oxygen which has made a tremendous difference for her. Saturday night she slept better than she had all week. But it’s just a stopgap. Eventually, even with the oxygen she won’t be able to catch her breath as the capability of her lungs deteriorates. They also, after conferring with Dr. Loukas, doubled her pain med dosage. That change has helped knock the pain down substantially but brought with it all the associated mental and physical repercussions.
Sunday we went to Easter service with some friends and had a lovely time. After the service, people who knew Maggie in name were excited to finally put a face to the many prayers they had offered. And they offered more right then and there. Maggie said she was overwhelmed with the love and support she felt. I, too, was touched. I don’t think I made it through one prayer without shedding tears.
The rest of Sunday was spent visiting with friends out on the back porch. The weather was absolutely perfect even well after dark. We built a fire in the fire pit and just hung out, talking and laughing until after midnight. There were tears that night, too. But it was a day filled with magical moments. It was special.
The Hospice machine is still spinning up. We had our initial contact on Saturday. Yesterday Alice, our case worker come over. Tomorrow Angela, our social worker is coming to visit. They are essentially taking over how we get our medications and, supposedly, are going to make it less work for me. We’ll see. All the people we’ve spoken to are very nice although Maggie said it best last night that we don’t particularly click with them. But, I suppose, their calm, soft-spoken, and relaxed personality that is preventing a connection with Maggie and me is the same that helps them help the most people. No one wants Jim Carry as a Hospice nurse. We just probably aren’t in their core demographic for customers.
We can also hop in and hop out of Hospice as we feel it necessary by merely filling out a form. There are issues with insurance that require us to leave Hospice care if we pursue some types of treatment although it’s very unclear to them which treatments, which is troublesome. That tells me that most people on Hospice don’t pursue additional treatments otherwise these folks would have more specific knowledge. I guess we’ll have to figure this out as we go and teach them in the process.
MD Anderson has switched our visit from Monday (yesterday) to this coming Friday for the best reason I’ve heard from them ever. Dr. Kurzrock wants to meet with a team of her colleagues Wednesday to discuss Maggie’s case in order to figure out the best treatment possible. She wants to meet with us Friday to discuss what they’ve come up with. Dr. Loukas, although he is completely supportive of our right to chose, doesn’t believe that it’s worth spending what time we have at MD Anderson. Frankly, Maggie and I don’t know what to do. As of right now, we’re still planning on going but Friday seems like such a long, long time from now.
We are both scared, sad, and angry while oscillating in and out of sweet denial. There are moments, like Sunday afternoon lunch with our friends from church, where Maggie and I are our old selves again, blabbing on about places to eat in Austin (one of our favorite topics.) It’s so pleasant to forget, even for a moment. And it hurts so badly to remember. Looking forward is scorchingly painful. Someone said it best in a previous post, “Jesus, take the wheel.” I fear I’m beginning to just shut down and become less and less connected with the outside world. My attention is so intensely focused on Maggie, doing everything I can to protect and care for her while watching for and nurturing special moments, the ones that take our breath away.