Wednesday Update

I know so many of you keep checking our blog regularly, some several times a day. I am sorry I haven't written as much lately. I'm not sure why. I am glad for a while not to have much to report, but I know that you are all faithful supporters of our battle, and I should do better to keep you updated, even if it is brief.

Or maybe it is because I just don't know what to say anymore.

Brian has been about the same since 2 weeks ago on Friday. For that, I am thankful. We continue to improve his pain management, although the suffering is still there. He hates being physically limited without the use of his legs. His legs are very bony and have lost so much muscle...same with his arms and hands. His wedding ring has tape on it to keep it from falling off. You could probably see in the pictures how different he looks. You could go back in the archives and see October, when his face was swollen. He told me tonight he is ready for another haircut and a shave to get ready for the Heflin pictures this weekend.

Four years ago tonight, the doctor put me on bedrest with Tye. Rachel was 8 days early, Amberlea 13 days early, and Tye was pushing a month early. It is amazing how moments in your life can be etched in your brain, as if it just happened yesterday. I'll post some pictures of baby Tye and Daddy this weekend on his birthday. We're looking forward to another busy, but memorable weekend.

People have been so nice to us. I would say that I can't believe it, but I do because we are surrounded by such caring and loving people. I would say that some things surprise me, but they really don't because the world was made to be good. We have been so blessed to be well taken care of.

The kids are ok. Actually, Amberlea is my biggest worry, as far as the kids go. That 2nd grade age is just tough, as she knows too much and thinks about things like a big kid, but isn't old enough to rationalize things and realize things will be ok. She has been battling tummy aches and more, and now is staying home tomorrow with a headache and sore throat. I think I'll take her to the doctor tomorrow because she is actually running a temp and her tonsils are swollen. I hope to spend some special time with her tomorrow also.

How about me, people ask...hmm. Most people expect that I'm having a hard time, but holding up, and that is probably right. The last few weeks have been a blur, and I actually feel somewhat numb and in shock. I feel like I'm in a daze, in the twilight zone...almost like an out-of-body experience, or like I'm on the outside looking in. It doesn't feel like it is really happening, maybe because I expected something to be happening. I worried that he wouldn't make it to the end of the month, and here we are, now the 31st. I had my big reality check when he went to sleep after the Halley pictures and barely woke up for 3 days...one day he was basically unresponsive, with some irregular breathing, and my whole life flashed before me. Now that he is feeling better, I almost don't know how to act. I miss being close to him, I miss it all. I miss the laughs and the kisses and laying in bed, holding hands. I miss his smell and feeling his scruffy face against mine. I miss his cheery disposition in the morning (I'm not a morning person). It is all different. Cancer sucks. I feel like I'm in this deep grief, yet he's right here. I feel like I'm grieving the loss of some very important things that I miss, and when he's gone, I'll grieve them all over again when they are really gone. This disease is so devastating. What I find is no tears, and then when they come, they are a flood, when I least expect it. I called home the other day, and when he answered, I could barely talk because it felt so good to hear his voice. It was hard to even enjoy hearing him because it was so devastating that it is being taken away. It is almost like he's being dangled in front of me...here, look at this wonderful man and how great he is...don't get used to it. I feel pulled in all directions. More than ever, I find that all three kids need me all the time. It is exhausting, yet rewarding that I can take the time to help them and love them. There never seems to be enough hours of the day. I went to bed at nearly 4am, then got up at 6:45 to get the kids off...dozed until around 8, then got up for the day...nurses came, ran around and read and papers at the library while Brian's brother was here, spent time with the kids tonight, took care of Amberlea, tried to get Tye to sleep for like an hour, helped Brian (mornings and evenings are time-consuming), and now it is nearly 1am again. How could I ever work? I went in for a teacher appreciation lunch today, and Tye caught a glimpse of me and freaked out. He wanted to be with me, he always wants to be with me. I am glad we are close because we are really going to need each other. Even so, it can be draining. I am also angry. I so wanted Brian to feel good enough to do some things. I wanted to go to a dinner theater. He says he still wants to, but he is saying a lot of things, and then when I start to move forward on anything, he is reluctant. The time is just ticking away, and I personally just don't think he is enjoying any of it. I can tell he wants it to be over. If it were me, I would just be so glad that I had that one more moment, at least I think I would. I think he sometimes thinks that, I just don't know. What I do know is that a month has passed since we stopped treatment, and he's about in the same shape as New Year's, although the pain is better. Our time together is slipping away, and it is so difficult. Hollywood would lead you to believe that cancer patients want to go out and do things, see things, make memories, tough it out through any amount of pain, go places...it isn't like that for us, and my counselor says it isn't usually like that for anyone. Often times, they just feel so crappy that they don't do anything. It makes me angry that we can't be the ones that could just enjoy a few special moments. The days just tick, like we're just living a normal life. What did you accomplish in the past 30 days? What good did you do? How did you change? We can't say a whole lot more than anyone else, really. Maybe I was expecting or hoping for phenomenal, amazing, memorable. I'm not saying it has been bad...good to be together. Just nothing out of the ordinary that would stop the 5 of us in our tracks.

Gosh, now I'm griping. But seriously, I think it gets like that. It feels good to try to act normal, to have a normal family and life...so the normalcy overtakes the chance to do special thigns that would stand out in the big scheme of this. So we go on with everyday activities, with a head full of heavy thoughts and fears.

Now I'm actually having trouble blinking my eyes! I should sign out for now. Take time today to reflect on the last month...what can you do better, what good can you do?

Jenni