heinz family

Overall, it’s been an amazing week. Alice has been back at school nearly full-time. She leaves a little early and went in late one day, but overall, she’s back in school and loving it. When she gets home she’s tired, but not exhausted and enjoys working on schoolwork and thinking about normal things.

Frankly it took me a while to get back in the swing of things. Monday was my first day back to work and I felt distracted, but it also felt good to be back doing normal things. I say that “normal” a lot don’t I? I guess that’s what it’s about; thinking about things like, do I have any clean clothes, and what should I make for dinner? I have felt like we’ve come out of some strange alternate universe and now are realizing that the rest of the world has been really going on as usual. For example, I was at a meeting Monday and everyone was talking about the Olympics. Now I knew they were going on but honestly, I can’t say I watched any of it. I can’t say I had my TV on for weeks (I guess we watched a few DVD movies, but …). So everyone is talking about the Olympics and I’m sort of feeling like I’m not really part of the same reality as everyone else in the room. And people were talking about renovations they were doing on their houses, and plans they had for spring break or the summer, and I felt so … strange. I hadn’t thought about my house (much less cleaned anything other than the bare necessities) or spring break or the future for that matter in what seems like an eternity. It all felt so foreign. But as the week progressed and Alice was getting more and more into normal routines, I found I’ve been thinking about my job more and what I want to do in the future there (my work place is in a huge transition), and plans for the summer, and things like that. Do we dare make plans? I recognized how really everything has been on hold. Do we dare dream about the future?

I have also heard Alice talking more about the future again. She had really stopped and was saying things like, “if I get to go to school next year” and “who knows if I’ll be able to do” … whatever. By mid-week she was talking about next school year and taking swimming lessons in the summer and wanting to finally get to level 10 in swimming. It has been very joyous to hear these words, and for all of us to think these thoughts. While I very much believe we need to take this life one day at a time, I also have come to see, that we humans need to dream. We need to think forward, to plan, to hope, to dream.

Alice really had a good week. Unfortunately on Friday (about 4:45PM) Alice lost the feeling in her left arm again. It felt heavy and numb again. She had finally finished her steroids on Tuesday after a really slow, gradual wean. As it was 4:45 PM on a Friday, I called the neurosurgery clinic fast to see if I could reach anyone. They are done at 4:30, so I called my old friends on oncology, as they are open till 5PM. I reached one of our favorite nurses (Carla) and she ran it by the on-call person there. Stacy and Kathy were out for the day. Anyway, they recommended we restart her steroids, at a very low dose increasing her as we saw fit for symptoms, and see if we can get along till Monday when we could talk to all our regulars. The numbness lasted about 45 minutes (shorter than the last 2 times) and then she seemed fine. Then Saturday she got the “head pain” from hell. After it was over Alice said it was not a “headache” but “head pain”; she felt like her "head was cracking open". She was rubbing at her forehead and eyes and started pulling at her hair. She couldn’t stand to have anyone talk or touch her. I gave her another dose of her steroids and some pain medication and gradually she feel asleep. As this was Saturday, of course I had to reach the on-call neurosurgical resident. He was a nice man but frankly not much help. He said at 1 month post-op she should not be having cerebral edema and so he wasn’t sure why they were treating her with steroids. Blah, blah, blah. In the end he of course told me, I can’t evaluate her on the phone so if I was really concerned I had to bring her up to Portland. Well, she slept for a few hours and woke up feeling better, so for now, we wait. If she does anything else weird I’ll bring her up to Portland, otherwise we increased her steroids and will get through till I can run it by everyone who knows her on Monday.

So that’s where we’re at. I guess we get to keep our little puffy face steroid girl a little longer. We are definitely getting back to “normal” but don’t think we’re quite there yet. Then I was thinking, maybe this is “normal”. Maybe she’ll just periodically loose the feeling in her arm and have some weird pain. I don’t know. I do know that she is still doing better than I ever imagined, and I am still amazed by how well the whole process has gone. And I am still amazed by the love and support we get continuously.

Thank you all for caring. Keep us in your thought and prayers. We are part of an amazing miracle.

Love and peace,
Susan