#10 当たり前は当たり前じゃない-5

２００３．８．２９(金)
　今日の採血で外泊できるかどうかが決まっていましたが，見事，外泊禁止となりました．前回の白血球が２３００だったのに，今回は１３００でした．やはり，ステロイドで見かけ上増加していただけだったのでしょう．ただ，ショックですね．
もし，今週末に家に帰れたら，焼肉食って特上ステーキ食って，本マグロの寿司を腹いっぱい胃袋に収めようと思っていたのですが，夢，ついえるって感じです．自分自身，この治療をとりあえずのゴールと想定してやって来たのだが，そんな事も無意味になってしまった．この外泊を誰よりも楽しみにしていたのは自分自身ではありますが，家族の皆もまたショックだったと思います．父親なんかは仕事を半日で終わらせて休みをとる予定だったみたいで，本当に申し訳ない気持ちになりました．あ，ちなみに親父の風邪は良くなったようですよ！で．なんともタイミングが悪いのか，朝の採血後，噂の膝痛や腰痛が出て来まして，きっと今頃は白血球が増えている事だと思います．なんだか，膝や腰が心臓の拍動と同じようなリズムで痛くなるのですが，それがあると，必ず白血球が多いんです．そのため，明日もう一度採血をしてもらうことに．上がっていることを祈りましょう．どうぞ上がっていてください．

２００３．８．３０(土)
　いつもより遅くに主治医がやって来た．「外泊，いいよ」どうやら，血液検査の結果１日だけ外泊しても良いと判断してくれたらしい．今日から，１泊２日で外泊して来ます．ありがとう！それでは，行ってきます．いざ，外界へ！！
 
２００３．８．３１(日)
　ただいま．今日は午前中，部活に顔を出して来ました．たまたま練習試合で，1試合目にベンチ入れさせてもらった．感謝．やっぱり野球はいい．そう思わせてくれる，監督・コーチに感謝．それに，チームメイトに感謝．たった５・６時間しかグランドにいなかったのに，みんなから沢山の勇気をもらえた．また，チームメイトとキャッチボールもした．針(中心静脈カテーテル)が入っているため力を込めて投げることはできなかったが，なんとか球を投げることができた．バットも振れた．久しぶりに振るバットはとても重く感じた．筋力の衰えを実感するとともに，身体を動かせることの充実感を味わうことができた．改めて，動けるってことは素晴らしいことなんだなと実感した．きっと，毎日ハードな練習をしている皆はそう感じないかもしれないけど．けど，自分が復帰したら，そういう事も伝えられたらなと思う．
　さて，話題は移植．早ければ，あと７０日後くらいにはできるはずだが，移植前の前処置やその後のGVHDも半端じゃないほど辛いんだろうけど，まだ恐怖心はない．幸い，退院した後のやりたいことが沢山あるおかげでワクワク感の方が優っているのだろう．移植に向けて，体重管理の方もやっている．しかし，今日の外泊で念願の焼肉，ステーキを胃中に納めることに成功した結果，数週間前まで６０kgを切る手前までだった体重も６４㎏まで増加した．もうやめよう．あえての減量は．ひとまず，ダイエットをやるのは９日以降にしよう．なぜ，９日以降かというと，９日に移植の話を受けるのである．どうやら，現在どこかで自分に骨髄を提供してくれる予定の人が，最終的に移植手術をしてくれるかどうかの最終合意を近々出してくれるらしい．なんとか合意してくれるといいのだが．

２００３．９．１(月)
　今日，初めて新しい先生に採血をしてももらった．案の定，探られてしまった．そう，我々患者の世界では，「探られた」というのは，「血管を探られた」ということで，これがまた非常に痛い．しかし，医師の成長なくして我々患者は助からないのもまた事実である．そのため，「我慢」以外の道はない．「我慢」といえば，本日はルンバールもやった．前回の失敗があったので今回も少し身構えていたが，なんとか成功した．処置をしてくれたのは主治医のM先生．あのS先生がM先生のことを「大先生」というほどの先生なのです．とってもすごい尊敬する先生．
　ルンバールが終わり，「２時間安静ね」と言われたものの，突然の尿意．大丈夫だろうとトイレに歩いて行ったら即頭痛．そして吐き気．初めての経験だった．これまでは４０分ほど安静にしていればその後動いても何もなかったのに，今日は５０分後の出来事だった．やはり，経験が大事．見くびるな，ルンバール．
　さて，本日はルンバール以外にも嫌な出来事があった．それは，食事制限だ．移植に向けて，減量しなければならないのだが，薬の副作用で食欲が爆発している．それに伴い，カップ麺等の食事が増えているのだが，それに今日ストップがかかった．ある看護師が，「今日からカップ麺もお菓子も禁止」と．ムカつくし，辛いよ．．この人は，いい人だけど，言うことがストレートすぎてムカつく．でも，ここら辺で変わらないと，移植の成功率が下がってしまう．．頑張らないと．．我慢，我慢，，我慢していこう．

つづく

2003.8.29(Fri.) Today's blood draw was to determine whether I could stay out overnight or not. My white blood cell count was 2300 last time, but this time it was 1300. I guess it was just an apparent increase due to the steroids. I am just shocked. If I could go home this weekend, I was planning to eat yakiniku (barbeque), steak, and sushi with tuna, but I feel like my dream is about to come true. I myself had come here with this treatment as my goal for the time being, but it turned out to be meaningless. Although I was the one who was looking forward to this outing more than anyone else, I think my family members were also shocked. My father had planned to finish work in half a day and take the day off, and I felt really sorry for him. By the way, my father's cold seems to be getting better! So.... I guess the timing is not good, because after the morning blood draw, I started having knee pain and back pain, which I heard about, and I'm sure my white blood cell count must have increased by now. My knees and hips ache in a rhythm similar to that of my heartbeat, and when they do, my white blood cell count is always high. So I'm going to have my blood drawn again tomorrow. Let's hope it's up. Please let's hope it's up.

2003.8.30(Sat) My doctor arrived later than usual. Apparently, the results of the blood test showed that it was OK for me to stay out overnight for one day. I'm going to stay overnight from today. Thank you very much! Well then, I'm off. Now, I'm off to the outside world!

2003.8.31(Sun) I'm home. I went to the club activities in the morning. It happened to be a practice game, and I was allowed to be on the bench for the first game. I'm grateful. Baseball is good. Thanks to the coach who makes me think so. And thanks to my teammates. Even though I was on the field for only 5 or 6 hours, they gave me a lot of courage. I also played catch with my teammates. I couldn't throw with much effort because of the needle (central venous catheter), but I managed to throw the ball. I also swung a bat. The bat felt very heavy after a long time since I swung it. I could feel my muscles weakening, and at the same time, I was able to experience the satisfaction of being able to move my body. Once again, I realized how wonderful it is to be able to move. I'm sure those of you who practice hard every day may not feel the same way, but that's the way I feel when I get back. But I hope to be able to tell people about that when I get back to work.　Now, on to the transplant. I should be able to have it as early as 70 days from now, but I have no fear yet, even though the pre-treatment before the transplant and the GVHD afterwards will be extremely painful. Fortunately, I have a lot of things I want to do after I get out of the hospital, so I guess the excitement is more important than the fear. I'm also working on weight control in preparation for the transplant. However, I succeeded in getting my long-sought-after grilled meat and steak into my stomach during today's overnight stay, and as a result, my weight, which was just under 60kg a few weeks ago, has increased to 64kg. I'm not going to do it anymore. No more daring to lose weight. For the time being, I'm going to wait until after the 9th to start dieting. The reason why after the 9th is because I'm going to receive a transplant on the 9th. Apparently, the person who is going to donate bone marrow to me somewhere is going to give me the final agreement on whether or not he will perform the transplant operation soon. I hope they will agree somehow.

2003.9.1(Mon) Today, I had my blood drawn by a new doctor for the first time. As I expected, he probed me. Yes, in our patient's world, “probed” means “probed for blood vessels,” which is also very painful. However, it is also true that we patients cannot be saved without the growth of doctors. Therefore, there is no other way but to be “patient. Speaking of “patience,” I did the Lumbar today. I was a bit nervous because of my previous failure, but I managed to do it successfully. The doctor who performed the procedure was Dr. M, my primary care physician. Dr. S calls Dr. M “O-sensei” (a great doctor). I respect him very much.　After the Lumbar was finished, I was told to “rest for 2 hours,” but I suddenly had a urge to urinate. I walked to the restroom and got a headache. I walked to the restroom and got a headache and nausea. It was my first experience. I had been able to rest for 40 minutes and nothing happened even if I moved after that, but today it happened 50 minutes later. Experience is the key. Don't underestimate Lumbar.　Well, there was something else that happened to me today besides Lumbar. It was the food restriction. I have to lose weight for the transplant, but my appetite is exploding due to the side effects of the medication. As a result, I have been eating more and more cup noodles and the like, but that was stopped today. One of the nurses said, “No more cup noodles and sweets from today. It pisses me off and it's hard.... She's a nice person, but she's so straight forward that it pisses me off. But if things don't change around here, the success rate of transplants will go down.... I've got to keep trying. Patience, patience, patience.