December 30, 2009

We’re resting. Trying to sleep and be still enough to get over the hump of this virus barrage. All of us have felt sick at one point or another. A good night’s sleep seems to have cured me, but I feel one sleepless night away from a nasty cold. Tanner has stayed fever free, but seems to feel bad sporadically. She has spent about 6 hours a day for the past few days in bed watching TV by herself… a sure sign she doesn’t feel up to snuff. She complains of a headache and nausea and just generally not feeling well.

The difficulty in our situation is discerning which symptoms belong to an illness and which belong to the chemo. Especially now that we are adjusting to a new phase of treatment. I remember cancer moms telling me that their kids were very fatigued during the beginning of long term maintenance, so who knows.

Tomorrow is clinic day. It marks the beginning of the second month of long term maintenance. Tanner will get Vincristine through her port and will start a five-day pulse of steroids. It’s so frustrating that the first day I would expect her to start feeling better from this virus is the day she will start the steroids that make her feel so bad.

Renovation work is starting on our new house, which gives John and I something else to think about. It’s nice to have a distraction, but I really need to get moving with this packing stuff!


Taking it Back

December 9, 2009

We’re working fast and furious to pick materials so we can hit the ground running on our new house renovations when we close next week. Buying this house has been a really great thing for all of us. It feels like we’re getting back something the cancer took from us back in June when Tanner was diagnosed. We may have lost the house we had a contract on back then, but we have found another that suits our needs even better and lets Tanner stay in her school as long as we want.

It’s also given us something to look forward to. Something we know is not going to be taken from us, or fall through because of low counts or because someone got sick and we couldn’t be around them. There are so few things I allow Tanner to look forward to these days – it’s just too painful for her to be disappointed again and again. Usually, we don’t tell her about something fun we’re going to do until right before we do it; that’s when we know its really happening. But, this house is a pretty sure thing and we are all happy to be dreaming about something that has nothing to do with cancer.

Tanner is feeling pretty good, considering the steroids. She goes in spurts where she seems to feel pretty good to times when she just doesn’t feel like doing anything but lie down. The past two days, I’ve seen the side effects from the Vincristine creeping in as well. Yesterday, her mouth started burning whenever she ate or drank anything. This morning, her jaw started aching and tonight, her upper leg is hurting so badly she is lying in bed right now, waiting until I can give her the next dose of painkiller in 20 minutes. I expect in the next day or two to see the awkwardness and difficulty running and climbing stairs to return. These side effects are like old acquaintances you wish would stay in your past – familiar, but not good for you. The treatment for this disease is cruel, even while giving us hope.

She finished her five-day pulse of steroids this morning; hopefully, she’ll start feeling better soon. By next week, we’ll start having to be a little more careful about getting out since the oral chemo she has been taking daily should start affecting her counts by then. But, tomorrow we are taking advantage of our freedom and having a girl’s day while Jake is at school. We are going to Panera after we drop him off to have her schoolwork time in a booth over bagels. Then, home to make a gingerbread house without little brother stealing all the candy.

I really hope Jake can continue going to school this month. He had such a good time on Tuesday and his Christmas program is coming up next week. We’ve been practicing Jingle Bells and he’s got it down cold so I hope he gets to have his moment to shine.

It feels like we are taking back our lives, little by little.