piano room reveal

Here is a little video of my new room. I asked James to play some background music to add drama. He was happy to oblige with a new song he is working on for the next recital. He is a great performer, but what kills me is his theory knowledge. He has been transposing songs for me ever since he learned different key signatures (I don't even know if that is what they are called). His teacher (she is wonderful) is big on theory and James just seems to get it.

The room looks like something out of the Pottery Barn catalog, no? Very beautiful.



I have tried so hard not to let my kids get behind in piano these last few weeks. I feel like I just can't let this one go. When my cancer came back in the leg last year, I thought long and hard about what I want to accomplish with my kids. It was also the time my sister bought me the book Battle Hymn of the Tiger Mother, and after reading it I felt sure that piano was something that would fit many of the things I wanted to give my kids. It gave them a skill, something to be proud of, something we could work on together, something challenging, something that they could always have. But mostly, an outlet.

I find myself, particularly in times of distress, staring at the piano and wishing so badly that I could pound out what I feel. That I could give my feelings a voice without having to speak. I am missing some way to express myself. Josh also feels this way. We have always said that our kids would play, but that book changed my attitude toward the whole thing. I don't expect them to be concert pianists or anything, but I do expect that when it's time for piano practice, that they be serious and don't waste time. I expect them to get it right. I also expect them to fight with me about it. And I expect to win these arguments.

I hired a piano tutor for the boys for now, as I am not very consistent with their practicing. I have spent an hour almost daily helping these kids out, and it makes me sick to think that we could lose all we have worked for. There is Tiger Mother blood in me now, and my children will keep up with piano.

lucky

I asked some very talented and tasteful friends to help me pick out some new chairs and paint for my piano room. We needed to make it function also as an office for Josh to work from home when he needs to. True to these friend's nature, they went above and beyond. Today they gave the room a make over that brought me to tears, and had the kids asking if they could sleep in it tonight. I will get pictures up tomorrow. Last time I went through treatments the room was painted and decorated by my aunt and cousin, and was just the nicest gift ever. Something completely finished, not the kind of thing I pull off easily.

There are so many offers to help all around, it is very overwhelming.

I always feel so lucky and blessed. Always. I am so grateful for the people I am surrounded by. You name it, I have it. The best husband in the world (hate to brag, but honestly I am in awe every day at how he his holding it together). A large, very helpful immediate and extended family. Dear friends, the kind I could ask for anything. A neighborhood of wonderful people just waiting to help.

And my kids are dang fun. They got a hand-me-down flip camera phone from an uncle, and today have started to make some karate how-to-videos. "Everything but forms" James explained to me (I don't know what forms are). I mentioned if it was good enough we might want to share a bit of it on the blog. Their eyes got very big. I really hope you get to see how serious karate can be. Yes, think Napoleon Dynamite.

We played with photo booth a little today and couldn't stop giggling.








Sweet MacBook. We love you already.

feeling better, even thought I don't really remember feeling worse

So, I am feeling like 95% today. Yesterday I was sick and tired (and oh, so pale. I was terrified every time I looked in the mirror). But woke up at 6:30 today ready to go. Tuesday really is the magic day I guess. The water is almost gone now, and I might try jeans tomorrow.

I am certainly coming out of a strange fog. Monday my sister came down to help, and we started to figure out how much I really don't remember about last week. I couldn't remember her at my house with her kids when I got home. I didn't remember which neighbor brought dinner over, or that anyone brought dinner at all. A friend came over and asked how my tounge was, and said that it looked so much better than when her sister saw it. What? Her sister saw it? I haven't seen her sister since. And so, as my sister spent the day with me I discovered I remember almost nothing, just like they said I wouldn't of my week at the hospital.

Josh says I was involved in all conversations, watched movies with him, commented on everything, talked to everyone who came. Made friends with the nurses. Acted very appropriately. Drowsy, yes, but he would never have guessed I would forget it. I seriously can not even remember where the bathroom in that room is. I had him tell me the plots to the movies we watched, and they were totally unfamiliar. I am a little more than creeped out.

The only thing I vaguely remember is a male nurse asking if I wanted a shower or sponge bath, to which I replied I didn't need either one. However, I just unpacked my suitcase this afternoon and pulled out 10 pairs of clean underwear, and 0 pairs of dirty underwear. Gross! Josh has strict instructions to drag me to the shower against my will. He says lots of things are going to change now that he knows how this goes down. For starters, he will be choosing the movies.

I also learned what I missed by being away from home. The boys had a piano recital and a chance to play their songs for the judges. James claims he made no mistakes (the score may prove that). And it was his Beethoven song I have loved so much! I missed Sam and Luke's baskets they made on Saturday at their games that made them so proud. I missed Sam getting up in church and bearing his testimony, and James getting up after him apparently starting off with something like, "I didn't want to get up here today, but...." I just want to be there. Which is pretty much all I'm asking out of life right now. Or somewhere at least. I don't have time to just be forgetting entire weeks.

So I am planning my next stay at the hospital. Josh ordered me a MacBook which arrived today for the purpose of sorting though our never-been-organized family pictures. I figure I am going to spend my time making cute family videos and then surprise myself with them when I come to my senses.

hi

I have been meaning to get an update in here. But things are a little...crazy lately.

You see, when you are at at the hospital, they do a pretty good job of knocking down your symptoms in like 2 minutes using powerful drugs that are given directly in your veins, just as soon as you have a complaint. That is pretty wonderful. And with all the anti-nausea medication, and demerol (for rigors), and scheduled ativan(for fun?)...you plain don't know much about what is going on (this is a good thing, because all you miss is you feeling rotten). And that is why I had Josh do the updating in the hospital.

But why I insisted he dictate a small message from me the night I got home++++ (while still under all influences of drugs) is just...funny. I wondered why Josh was smiling when I got to the 'explosive diarrhea' part. I'm sure you all appreciated that.

We are home. We are okay. Walking out of the hospital was very strange with all that weight sloshing around and my legs rubbing together and wobbling. I was very off balance. Josh has had to recover me from the bathtub from which I may have tumbled into (unhurt thanks to all the padding). I will have to take pictures next time. I have lost 10 lbs just today.

Strange to feel old in a young persons' body. To be fat in a thin one.

We put a little post-it-note on the door bell when I got home that says "Alisa is resting, please try back later." It hasn't moved. I still feel quite ill. At the least, very tired. They assure me that around Tuesday I will be very much back to normal.

So I wait until then. And try to enjoy a few rays of sun February is so uncharacteristically spilling all over my kitchen, and few of the boys jokes constantly running through the hallway. I have even had some very wonderful, long, naps, to which I have been lost in some of the very best dreams I've ever come up with. Hoping these are still the real parts of me, and not the drugs talking.:)

We're Home

We are home tonight, recovering from a very long week. I have gained 23 pounds of water dispersed throughout the body, there is fluid in my lungs, thrush on my tounge, I have no appetite, explosive diarrhea, my skin is red like a sun burn and itches everywhere.

I know these are good signs, it means my body is attacking my body, this means my body is on high attack. Through the high fevers, rigors (uncontrollable shivering,) and confusing times, I could hear myself say, we can do hard things, we can do hard things, and often times I wanted to say, SHUT UP!

The End -
Alisa

Transcribed for you by Josh Linton

Update Day 4

Alisa has been pretty sick all day. Nothing specific just feeling rotten. up to this point she has had 9 doses. If she gets another on Friday we will not be home till Saturday. If they determine she has had enough there is a chance we are home Friday night. we will not know until we see the Doctor Friday morning.

Sorry about the late update.

Josh

Update Day 3

The boys came to visit this morning, it was good to see them. I think they were happy to see their mom.

Here is James' take "it was really nice to get to see mom, but all those cords were creepy. I didn't like those"

Alisa has been feeling...sick...the doctors and nurses are happy with the results so far. It is a strange situation. They want Alisa to get sick, but they treat the symptoms so she doesn't feel as sick. They are telling us everything is going as expected

Alisa will get her 7th dose of IL2 at midnight. I think they are hoping to get at least 10 doses in this week.

She also wants me to mention that she has gained 10 pounds (water) and her skin is bright red (side effect of the drugs)



Josh