#8 当たり前は当たり前じゃない-3

２００３．８．２５(月)
　昨日の夜，例の「イライラ原因は何だ事件」で看護師さんが相談に乗ってくれた．こんなガキの悩みを一生懸命に聞いてくれる．今朝だって，ある看護師さんが相談にのってくれた．そしたらどうやったらストレス解消できるかというのを考えて来てくれると言ってくれた．本当にありがたいその日を楽しみにしたい．さて，今日から治療が再開された．副作用は全然ないのだが，とにかく放尿量が半端じゃない．脱水になってしまう勢いだ笑．そんな中，学校の先生がお見舞いに来てくださった．クラス担任であり，体育教師でもあり，陸上部顧問という大変忙しい先生だ．忙しい合間をぬってわざわざ来てくれた．今度来てくれる時は課題テストを持って来てくれるらしい．半分いらないけど半分欲しい気持ちだ．まぁとりあえず頑張ってみるか．授業を受けずにどこまでやれるか試したいしね．
　また話は変わるが，次は主治医変更の話だ．ここでは主治医が２名体制で，１名が変わるようになっている．T先生は，ちょっと人間性に欠ける部分があるけど，技術はすごい．マルクは上手いし，ルンバールはこの前ちょっと失敗したけどそんな下手ってほどでもない．IVHも失敗しないし，いつも簡単にすんなり入る．もう一人の主治医はS先生．S先生は完璧な偉大なるお人だ．欠点がない．カッコイイし紳士的だ．そして何より信頼できる．人格形成も人間形成もしっかりされている方だし，技術もピカイチだ．処置はものすごく早いし，本当に言うことなしの先生だ．今回の主治医変更では，一気に２名が変更となるようで，とても不安になる．今までは先生が変わるって言ったら研修医だけだったのだが２人とも一気に変わると患者としてはキツイ．ましてや何だか今度の先生は１年目の先生らしい．ヤバい，これじゃあどこまで俺の体がもつか心配だ．これが唯一の不安材料．でも，こればっかりはしょうがないことなのだろう．医者も最初は未熟なものだろうし，そういう期間を経て立派な医者になるのだろうから．だから，完全に開き直ることしかないのだろう．一応，師長さんや他の病棟長に相談したが，相談したところで何も変わらないと思った．なるべくKくんの意見は考慮すると言ってくれたけど，実際のところはあんまり考えてくれないんじゃないかと思う．忙しいし，患者は結構いるみたいだし，たかが１６のガキの言うことなんてほとんど無視なんじゃないかなと思う．まぁ，別にいいけど．
　またまた話は大きく変わるんだけど，俺のちょっとした夢を語らせてもらえるでしょうか．まず，このまま順調に快速ペースで行けば１１月中に移植できると思う．まぁでも最初の目標は年内中に移植できればいいと思っていたから，かなりの快速ペースなんだろう．そして，１１月上旬に抗がん剤と放射線のきつい前処置をして，１１月下旬に移植．移植後は全然GVHD(副作用)なんか出ないで平気な顔で過ごし，１週間頃過ぎた頃に強い副作用で苦しむ．しかし，その後は予想以上の回復で移植後３週間で無菌室から解放．12月中旬には完全退院．その後は自宅でトレーニングを行い，２月頃にはメンバーと同程度の体力まで戻し，４月中旬には学校復帰．どうだろうか，この素晴らしいスケジュールは．超異例のスピードで退院した高校生が，夢の甲子園で大活躍！！なんてことになったら．でも，いくら野球やれる体に戻れたとしても，本当はできないんだ．移植から約１年は日光を浴びることが出来ないんだって．だから，この病気になった時点で俺の高校野球は終わっちゃったってこと．甲子園を目指して１年生の時はホントにぶっ壊れるかと思うくらい自分の体を痛めつけて，それから膝痛によって約半年間野球ができなくて，３年生が引退して新チームになって，心待ちにした２年になったと思ったら白血病だよ．まさかこんなに大変だとは思わなかった．正直，今泣き半です．部活の皆（同級生，後輩，監督をはじめとするその他諸先生方）は，このことを聞いたらどう感じるのだろう．ただ，どう思おうと，これは受け入れなければならない事実なんだよね．悔しいし，もどかしいけど，受け入れないといけないんだ．だって，移植しなければ死んでしまうんだから．きついけど，気持ち整理していかなきゃ．頑張らなきゃ．耐えて，耐えて，耐えまくろう．

２００３．８．２６(火)
　昨日はなんだかんだで全然眠れなかった．結局寝たのは夜中の２時半くらい．朝５時１０分に起きて活動していたから，ほとんど寝れていない．でも，不思議とそんなに眠くないんだよね．今日から治療の薬がオンコビンからステロイドに変わる．副作用という副作用が出ないのは嬉しいけど，自分の場合は顔に出てしまう．というのは，顔がりんご病みたいに赤くなっちゃって，ムーンフェイスという顔が腫れた状態になってしまうのだ．気分も悪くならないし，痛くもないのだが，熱を持って熱くなるので少し厄介だ．それと，今日からノイアップを打つ事になっている．この注射は皮下注射(皮膚の下ならどこに打ってもいい注射)で，少しの量しか入れないのだが，結構痛い．なんで注射を打つかというと，治療を始めると必ず骨髄抑制というものがかかり，白血球が作られなくなる．その期間を「ナディア期」というのだが，そのナディアは普通の人だったら２週間近く続くのだが，俺の場合はこの注射で大体３．４日で上げてしまう．自分の力で上げられないから注射をするのではなく，ナディアを１日でも早く脱出できるようにと，注射をするのである．そもそもナディアというのは白血球が少ない時期だから，その中にある好中球(黴菌などを攻撃してくれる)もないわけで，この好中球が無いと体内に菌が侵入してきても，そいつをやっつけることができないのだ．やがてその菌が体内で増殖し，臓器などに巣を作り，最悪の場合死に至ることもあるようだ．だからこのナディアは最も注意しなければならない時期なのだ．ちなみに，俺の今の白血球数は６００．一般健常者の平均は４０００-９０００．だから今が丁度その危険な時期にあたるということだ．
　さて，話題を変えて今度はこの闘病記の話．今日，午前中に主治医のS先生とT先生が回診に来た．いつも，「どう？」って言われるけど，いつも「何も変わらず順調です」と答えるわけです．というか，それ以外何も言うことはないので．日記をつけてることを伝え，この日記を見せてあげた．そしたら「本出せば？」と言うのです．確かにちょっと考えていたけど，うーんと思った．目的はお金儲けではなく，読んでくれた人が少しでも元気になってくれればいいと思う．自分自身，この病気になって，病気関連の本を２冊読んだんだけど，その本のおかげで今こうして前向きにと言うか能天気でいられるんだと思う．だからそう言う意味で本を出すことはとても良いことだと思う．もし，この日記が本としてデビューした暁には○○大に第一号を寄付したいと思う．そして，高校には第二号を贈ろう．いつかそんな日がくればいいな．
　最近は，色々と考え込むことが多くなってきている．まずは部活のこと．野球部の監督には，これ以上高校野球を続けられることが出来ないことを伝えていない．メンバーに対してもまだ言っていないから伝えなきゃいけない．伝え方も伝えるタイミングもどうしようか．．．結局，大会で一度もベンチ入りできないで終わってしまった．頑張れば入れたかもしれないのに．て言うか絶対最後の夏は入れる自信があったのに．やっぱり病気になって失うものは大きい．プロ野球選手に会えたり，サイン入りのバッドやグローブを頂いても，新聞で取り上げられても，やっぱり嫌だよ．やりたいことをやりきれないんだから．本当だったら今頃野球でバテバテになっているだろうに．学校に行っていたら可愛い彼女もできていたかもしれない．まだ１６歳だもんな，きっと人生の中で一番弾けられる年頃だろうに．．．はぁ，涙もろくなったな．ただ，辛いのは自分だけじゃない．特に両親．唯一無二の兄貴が生まれてすぐ，その兄貴は大病して，産んだ母親も俺を産んだ後に大病してるし．そんな周りの立場からすると親父が一番精神的に辛いんだろうと思う．だから俺は一刻も早く病気を治して親を安心させたい．と言っても，今すぐにどうこうできる訳ではない．でも，本当に心の底から安心させたいと思っている．
　移植に関する嬉しい話もあった．主治医のT先生が来てくれて９月９日に移植のお話会を設けてくれるとのこと．今すぐにでも移植をしたいくらいだから，本当に嬉しい．GVHDは心配だけど，きっと大丈夫だろう．移植前の治療は相当大変らしい．マルクも頻回にするようだ．前処置の副作用は，これまでの治療とは比べ物にならないみたい．だけど，楽しみだ．楽観的ではない．こういうの，嫌いじゃない．こういう性格で本当に良かった，親に感謝．けど，この性格も変わってしまうかもしれない．どうやら，移植をすると血液型も性格も変わる場合があるんだとか．それはちょっと．．嫌だなぁ．．．
　今度はマセ話．好きな看護師さんがどうやら風邪気味らしい．こういう立場だけど，心配ですよね．お見舞い行きたいけど，こんな状態だしね．この気持ち，結構本気で，「好き」なんですよね．まぁ，言ったところで今こんなんだし，立場がね．ただ，患者と看護師が結婚って素敵だよね．憧れるー！！．５歳上の看護師嫁さん．すごーく好きー．悶々してくるから寝ます！

つづく

2003.8.25(Mon) Last night, a nurse consulted with me about the “what's the cause of my frustration case” as I mentioned above. She is always trying her best to listen to me about such a kid's problem. Even this morning, a nurse consulted with me. She said she would think of a way to relieve my stress and come to me. I really look forward to that day. Well, my treatment resumed today. There are no side effects at all, but the amount of urine I urinate is just too much. I am dehydrated... lol... A teacher from the school came to visit me. He is a class teacher, a physical education teacher, and an advisor for the track and field club, so he is very busy. He took time out of his busy schedule to come all the way to visit me. The next time he comes to our school, he is going to bring us a test for our assignment. Half of me doesn't want it, but half of me wants it. Well, I'll give it my best shot. I want to see how far I can go without taking classes.　On a different note, let's talk about the change of doctor. Dr. T is a bit lacking in human qualities, but his skills are amazing. He is good with Marc, not so bad with Lumbar, not so bad with IVH, and always goes in easily and smoothly. The other doctor is Dr. S. He is a great man, a perfect man. He is a perfect great guy, without a single flaw. He is cool, gentlemanly, and above all, trustworthy. And above all, he is trustworthy. He is a man of strong character and personal development, and his technique is top notch. He is a very fast doctor, and I really have nothing to say about him. This time, two attending physicians are going to be changed at once, which makes me very uneasy. Until now, the only doctors who have changed were residents, but it's hard for me as a patient when both doctors change at once. And the new doctor seems to be a first-year doctor. Oh man, I wonder how long my body will last. This is the only thing that worries me. But I guess that's just the way it is. Doctors are probably inexperienced at first, and it is through such periods that they become great doctors. So, I guess the only thing to do is to be completely open and honest. I consulted with the head nurse and other ward heads, but I knew that nothing would change even if I consulted with them. They said they would consider his opinion as much as possible, but I don't think they actually give it much thought. He's busy, he's got a lot of patients, and I'm sure he's going to ignore what a 16 year old kid has to say. Well, I don't care.　I'm going to change the subject again, but let me tell you about a little dream of mine. First of all, if things continue to go smoothly at a brisk pace, I think I'll be able to do the transplant by the end of November. Well, my initial goal was to have the transplant by the end of the year, so I guess I'm moving pretty fast. Then, in early November, I underwent a harsh pre-treatment with anticancer drugs and radiation, and the transplant was performed in late November. After the transplant, I was fine with no GVHD (side effects) at all, and suffered from strong side effects around one week after the transplant. He was released from the sterile room 3 weeks after the transplantation, and was fully discharged from the hospital in mid-December. He was released from the sterile room three weeks after the transplant, and was fully discharged from the hospital in mid-December. He continued to train at home, and by February he was back to the same level of physical fitness as the other students. What do you think of this wonderful schedule? A high school student who was discharged from the hospital at an exceptionally fast pace, playing a major role in the Koshien (Japan's dream tournament)! What if that were to happen? But no matter how much he gets back in shape to play baseball, the truth is, he can't. I heard that I can't go out in the sun for about a year after the transplant. So when I got this disease, my high school baseball career was over. I hurt my body so much that I thought it would collapse when I was a freshman aiming for the Koshien, and then I couldn't play baseball for about six months due to knee pain, and then the third-year students retired and we started a new team, and just when I was looking forward to my second year, I had leukemia. I didn't think it would be this hard. To be honest, I'm half in tears right now. I wonder how everyone in the club (classmates, juniors, the coach, and other teachers) would feel if they heard this. But no matter how I feel, this is a fact that I have to accept. It is frustrating and frustrating, but we have to accept it. Because if I don't transplant it, it will die. It's tough, but I have to sort out my feelings. I have to do my best. I have to endure, endure, endure.

2003.8.26(Tue) I couldn't sleep at all last night. I went to bed at about 2:30 a.m. I woke up at 5:10 a.m. and started working. I woke up at 5:10 a.m. and was active, so I hardly slept at all. But strangely, I don't feel so sleepy. Today, the medication for my treatment will be changed from Oncovin to steroids. I'm glad that I don't have any side effects, but in my case, they show up on my face. My face turns red like an apple disease, and I have a swollen face called moon face. I don't feel sick, and it doesn't hurt, but it is a little annoying because it gets hot and swollen. Also, I'm going to get a Neuplate injection today. This injection is a hypodermic injection (an injection that can be given anywhere under the skin), and although it only takes a small amount, it is quite painful. The reason for the injections is that when treatment begins, the patient is subjected to a period called “bone marrow suppression,” during which the body stops producing white blood cells. This period is called the “nadir phase,” which usually lasts about two weeks in the case of a normal person. I do not give injections because I cannot raise my nadir by myself, but so that I can get out of nadir as soon as possible. Nadia is in a period of low white blood cell count, so she has no neutrophils (which attack mold), and without neutrophils, she is unable to kill any bacteria that invade her body. Eventually, the fungus will multiply in the body and build nests in the organs, leading to death in the worst case. This is why this nadir is the time to be most careful. By the way, my current white blood cell count is 600, and the average healthy person's is 4000-9000, so this is the dangerous time for me.
Let's change the subject and talk about this battle with the disease this time. Today, in the morning, my attending doctors, Dr. S and Dr. T, came for rounds. They always ask me, “How are you doing? I always answer, “Everything is fine as usual. Or rather, I have nothing else to say. I told him that I keep a diary and showed him this diary. And he says, “Why don't you publish a book? He said, “Why don't you write a book? I did think about it for a while, but then I thought, “Hmmm.... My goal is not to make money, but to help those who read it feel a little better. I myself have read two books related to this illness, and thanks to those books, I think I am able to stay positive and upbeat now. So, in that sense, I think it is a very good thing to publish a book. If this diary is published as a book, I would like to donate the first copy to XX University. And I will donate the second one to the high school. I hope one day I will be able to do that.　Recently, I have been thinking about a lot of things. First of all, club activities. I haven't told the manager of the baseball team that I can't continue to play high school baseball any longer. I haven't told the members yet, so I have to tell them. I don't know how to tell him, or when to tell him... After all, I ended up not making the bench at any of the tournaments. I could have made it if I had tried harder... I mean, I was sure I could have made it in the last summer. I lost a lot when I got sick. I don't want to meet professional baseball players, or get a baseball bat or glove signed by them, or be featured in the newspaper. I can't do what I want to do. If it were true, I'd be exhausted from baseball right now. If I had gone to school, I might have gotten a pretty girl. I'm only 16 years old, I'm sure I'm at the most exciting age in my life... I'm getting so teary.... But it's not only me that's in pain. Especially my parents. My brother got very sick right after he was born, and my mother got very sick after she gave birth to me. I think my father must be the most mentally hard to deal with from the standpoint of those around him. That's why I want to cure my illness as soon as possible and reassure my parents. But it's not something I can do right now. But I really want to reassure them from the bottom of my heart.　There was also a happy story about transplants. My doctor, Dr. T., came to see me and said he would hold a meeting on September 9 to discuss transplantation. I am so happy because I would like to have a transplant right away, and although I am worried about GVHD, I am sure I will be fine. I heard that the treatment before transplantation is quite difficult. They are going to give me Marc frequently. The side effects of the pre-treatment seem to be incomparable to the previous treatments. But I'm looking forward to it. I'm not optimistic. I don't hate it. I'm so lucky to have this kind of personality, thanks to my parents. But this personality may change, too. Apparently, transplants can change both blood type and personality. I don't like that... I don't like it...　Now for a crazy story.... The nurse I like seems to have a cold. I know I'm in this position, but I'm worried about her. I'd like to go visit her, but she's in such a state. I really “like” her, don't I? Well, even if I told you, I'm in this situation, and I'm in this position. But it would be wonderful if a patient and a nurse got married. I adore it! My wife is a nurse who is 5 years older than me. I love her so much. I'm going to bed because I'm in agony!