#9 当たり前は当たり前じゃない-4

２００３．８．２７(水)
　今日は採血をしました．白血球が大幅に上昇していました．この前は白血球６００だったけど，今回は２３００までいきました．ノイアップは２回打ちました．過去，最短記録です．今回は２回目で上がったけど，一応のために，駄目を押すということで，もう１日やるらしい．そんでもって，明日で治療の薬が終わるので，早ければ明日にはヘパロックできるようです．ということは，明日には自由の身になれるのです．これで階段登りも復活できるのです．多分自由になれたその日には嬉しくて５往復くらいしてしまうかもしれません．とりあえず，今日までで４㎏痩せたのですが，目標の５５㎏まではあと５㎏ほどあります．ちょっときついかもしれないけど，自分けじゃないからね．ダイエットするのは．自分のことを世話してくれている看護師さんも主治医も移植を控えている患者さんもやっているんだ．看護師さんとは一緒に１０㎏痩せようねって約束した．だから頑張って痩せるんだ．
　話変わって昨日話した看護師さんの話．今日も休みみたい．熱は下がったようだけど．でも，ひとまずよかったね．不思議と，自分以外の人が良くなると，自分の事のように嬉しくなるんです．最近．だから今，同じ部屋にいる人たち(患者さん)に大きな副作用も出ていないことがとても嬉しいのです．でも，自分の家族ではちょっと心配な事も．親父が風邪をこじらせてしまったみたいです．色々と迷惑かけているから，それで身体にきちゃったんだろうな．だから，今はそれだけが気がかりです．早く良くなって，また見舞いに来てもらいたいところです．
　一方，朗報もあります．今週末に外泊の許可がおりました！これで部活にもやっと顔を出せます！チームメイトも皆も，あまり会えていないから，きっと寂しい想いをしている事でしょう(笑)．何より，自分がとっても会いたいのですがね．
　さて，色々とテンションの上がり下がりの多い文章となっていますが，今度はテンションの下がるようなお話．今日，同じ病室のKさん，移植担当の先生からお話を受けていました．先生が部屋から出られたあと，Kさんの表情はとても暗い様子でした．キツイ事も言われたのでしょうか．移植前の大事な時期だからこそ，医師としての忠告を伝えたのかもしれません．それなりの覚悟で挑みましょうと．ちらっと聞いた話，移植前の治療は本当に本当に厳しいようです．それまで自分自身が持っていた免疫機能を完全に無くさせる作業のようですが，心身ともにやられてしまう方が多いようです．そして，なんとか，移植することまでこぎつけても，移植後の副作用で亡くなってしまう事も少なくないようです．本当に命懸けです．でも，自分自身，心のどこかで楽しみにしている自分もいるのです．なぜかはわからないのですが，なぜか，楽しみなのです．バッチコイ！移植！かかってこい副作用！！という気分でいるのです．直前なったら膝ガクガクかもしんないけど今は強気！おやすみ！！

２００３．８．２８(木)
　今日，点滴ヘパロックになりませんでした．理由を聞いたら，「腎不全になるかもしれない」と．なんだ，ジンフゼンって．でもひとまず，そんな理由でロックなしとなりました．なんだかよくわからないけど，一大事になるのを防ぐのであれば，それはやった方がいいですもんね．ありがとうございます，先生．残念だけど．
しかし，退屈です．今，病室にいる人たちは皆さんお昼寝しています．誰も構ってくれません．穏やかな病室です．
　先ほど，主治医と話しました．「外泊したいんだけど，いつころできますか？」主治医「金曜日の採血結果次第かな」とのこと．前回の採血で２３００になっていたけど，これはステロイドの作用によるものらしく，このステロイドがなくなっても，高い数値だと安心できるようです．そして今はまだステロイドが入っているので，あまり期待はできません．ただ，でも，やっぱり病院出たいですよ！病院出て外の空気吸いたいし，家族にも会いたい！色々食べたいとかじゃなくて，会って話したい！でもそれは叶わないのです．移植が近いので，色々とスケジュールを詰めながらやっているんだと思います．色々やってくれるのは嬉しいし，感謝すべきなのですが，でもやっぱり辛いです．この病気にとって，外泊がどれほどのものか．本当に医者たちはわかっているのだろうかと思ってしまいます．常に病室という檻に閉じ込められて，行動の自由がない生活を送っている患者にとって，外泊は何よりも気持ちがリフレッシュできる治療です．そんなこんなで，感謝もしている一方で，苛立ちがあるのも事実．なんとも複雑な心境です．医者側からすれば，命預かっているから簡単に「外泊しておいで」なんて言えないだろうしね．こんな苦しい想いをして，ちょっとの欲望のために再発なんて言ったら，それこそ最悪だ．これまでの治療が水の泡になってしまう．こんな苦しい時期を乗り越え，外界で生活できるようになったら，楽しく生きよう．思い通りにならないことをたくさん経験したから，それなりの我慢も覚えられたはずだし．頑張っていこう．頑張って乗り越えていこう．

つづく

2003.8.27(Wed) I had my blood drawn today. The white blood cell count was significantly elevated. The last time it was 600, but this time it was up to 2300. I took 2 shots of Neupuplate, the shortest ever. This is the shortest record ever. This time, it went up the second time, but they are going to give me one more day to give me a push just in case. And since the drugs for the treatment will be finished tomorrow, they can start Hepa-Lock as early as tomorrow. That means I will be free tomorrow. I will be able to climb stairs again. I will probably be so happy that I will be able to do 5 round trips on the day I am free. At any rate, I have lost 4 kg so far today, and I still have about 5 kg to go to reach my goal of 55 kg. It may be a little tough, but it's not my fault. It's not my own fault that I'm on a diet. The nurses who take care of me, my doctor, and the patients who are about to undergo transplants are all doing it. I promised the nurses that I would lose 10 kilos with them. So I'm going to do my best to lose weight.　On a different note, I talked to the nurse yesterday. She's off today too. Her fever seems to have gone down. But I'm glad for the time being. Strangely enough, when other people get well, I feel happy as if it were me. Lately. That's why I'm very happy that people in the same room (patients) haven't had any serious side effects. However, I am a little worried about my family. My father seems to have caught a cold. I've been giving him a lot of trouble, so I guess it's been taking its toll on his body. That's the only thing I'm worried about now. I hope he gets well soon and comes back to visit me again.　On the other hand, there is some good news. I got permission to stay out overnight this weekend! Now I can finally show up for club activities! I am sure that my teammates and everyone else must be missing me since I haven't been able to see them as much as I'd like (laugh). (Laughs) I am sure that my teammates and everyone else must be missing me since I haven't been able to see them much.　Now, I have been writing about the many ups and downs in my life, and now I would like to talk about something that lowers the tension. Today, Mr. K, a patient in the same room, received a talk from the doctor in charge of transplantation. After the doctor left the room, Mr. K's expression was very gloomy. I wonder if he was told some harsh words. Perhaps it was because it was an important time before the transplant that he gave her his advice as a doctor. He told me to be prepared to take on the challenge. From what I have heard, the pre-transplant treatment is really, really tough. It seems to be a process that completely eliminates the immune system that the patient had until then, and many patients seem to suffer both physically and mentally. And even if they manage to get to the point of transplantation, it is not uncommon for patients to die from side effects after the transplantation. It really is a matter of life and death. But there is also a part of me that is looking forward to it, somewhere in the back of my mind. I don't know why, but for some reason, I am looking forward to it. All is well! Transplantation! Come on, side effects! I'm in the mood. I'm sure my knees might buckle at the last minute, but for now I'm bullish! Good night!

2003.8.28(Thu) Today, I was not put on IV Hepa-lock. When I asked him why, he said, “I might have kidney failure. What the heck is a zinc-fuzen...? But for the time being, he was not locked for that reason. I don't know what it is, but if it prevents a big problem, it's better to do it. Thank you, sir. I'm sorry to hear that. But I'm bored. Everyone in the room is napping right now. No one is paying attention to me. It's a peaceful room.　I just talked to my doctor. When can I stay out overnight?” The doctor said, “It depends on the results of Friday's blood draw. The last blood count was 2300, but this was due to the steroid, and I feel relieved if the count is high even after the steroids are gone. And now that I'm still on steroids, I don't have much hope. But I still want to get out of the hospital! I want to get out of the hospital, get some fresh air, and see my family! I don't want to eat a lot of food, I want to see them and talk to them! But that's not going to happen. I think they are trying to work around my schedule because of the transplant coming up. I am glad that they are doing so much, and I should be grateful, but it's still hard. I wonder how much staying overnight means to this disease. I wonder if the doctors really understand. For patients who are always confined to the cage of a hospital room and have no freedom of movement, an overnight stay is the most refreshing treatment of all. While I am grateful for this, it is also true that I am frustrated. It is a complicated situation. Doctors can't simply say, “Go ahead and stay overnight,” since their lives are in their hands, can they? It would be a disaster if I were to relapse because of a slight desire after such a painful experience. All the treatment I've done up to this point would be for naught. Once I get over this painful period and am able to live in the outside world, I will enjoy my life. I've experienced a lot of things that didn't go my way, so I should be able to learn some patience. Let's do our best. Let's do our best to get over it.