結局。。。Mark will stay

11/25（日本語は後に続きます）

“How are you?” the mail delivery woman said cheerfully when I opened the door, but stopped short and added, “you don’t look good.”

I wonder if she reacted to my short and peppery hair, or to my skinny figure. I have been having difficulty maintaining my weight since I stopped my tube feeding about 10 days ago; my weight is now only 103 pounds with clothes on (down from 107 pounds,) one of the lowest points in my life. Last time when I was at that weight, I was trying to balance my life with two toddlers, and was full of energy.

Obviously my calorie intake is less than what I need, and I am feeling weak and lethargic; it takes a deep breath and determination even to carry a plate to the sink. When I went out for a walk yesterday, I was hesitant; if I walk one mile, I will burn about 150 calories; can I afford that now? I am not sure if I should resume my tube feeding to restore the weight and to feel strong, or if I should eat as much as I can and stop the tube feeding as soon as possible, in spite of the weight loss. If I am successful in stabilizing my weight, I can ask my surgeon to take out my tube when I see him on 12/4. Even though the J-tube worked a miracle on me, helping me maintain weight throughout the hard treatments and recovery, it comes at a cost; you cannot sleep well at night, it gives discomfort deep inside the intestine, and there is constant oozing at the insertion. I might need to suffer the weight loss to gain independence, and I have to be the one to make that decision.

This regression period came at the worst time. Observing my situation and hearing what I described, Mark went ahead and canceled his trip to Australia three days before the scheduled departure date; he will send in the paper to the conference, and postpone the research trip till next summer.

Even though I feel terrible about his decision, I am relieved by it (surprisingly). This may be one of those situations that are beyond one’s own will and effort, and one simply has to accept that he/she is still weak and cannot survive without help.

Similarly, I had to make a very hard decision about a work opportunity. I was asked by a major Japanese TV program production company and the MFA to help them make a special program about the MFA’s pristine collection, one that has been prohibited from public viewing by the donor’s bequest for nearly 100 years. I had a chance to see some of the artwork a year and half ago through a related project, and it was a breathtaking experience.

When the request came through the E-mail, I ignored my situation and said yes. But the more I thought about it, it became obvious that I would not be able to do it; how am I going to run around with a camera crew for 10 days?

I made one of the hardest phone calls ever to the Japanese company on Thanksgiving night and declined the request. I wonder how many more similar situations I will have to go through.

I choked on a very small piece of French toast this morning. The “pressured me,” who wants to regain a normal life as soon as possible, tried to eat the soft bread, in spite of the warning given by the nutritionist. Even though I thought I chewed well, the piece got stuck at the connected part, causing me to gag and blocking my windpipe. The battle is going to be uphill for a while.

ちょっと危機である。服（ジーンズとシャツ）を着たまま測っても体重が４６キロしかない。経腸チューブを使わなくなっておよそ１０日。どんなに頑張って食べても必要カロリーを摂取できていないらしい。そのせいか、毎日がけだるくて、お皿を流しに運ぶのにさえ、決意が必要だ。散歩にしても「ここで１マイル歩くと１５０キロカロリーぐらい消費して、痩せちゃうからやめようかな」と躊躇してしまう。食道を全摘した人のブログを読むと必ず「体重が減って体力がなくなって２、３ヶ月ゴロゴロしていました」という時期があるのだが、まさにそれである。特にメーンに出掛けたり、感謝祭(thanksgiving)の食事に招待されたりでルーチンに添えない日が多かったからかもしれない。

経腸チューブを使って少しカロリーを入れて体重と体力を増強するか、体重減少には少々目をつぶってでも自給自足の独立を獲得するか?その選択は結局は私に帰って来る。

病弱な人々のための栄養サプリメントにensureとかboostという商品があるのだが、恐ろしく不味いし、飲むと必ずお腹が痛くなる。しかし背に腹は変えられない。できれば経腸チューブはもう使いたくない。ここ２日間サプリメントに山盛りのアイスクリームを加えてシェイクを作って飲んでいる。飲むのに３０分以上かかり、飲んだ後１時間は動けないけど。

傍から見ると、そして当の本人にとっても今の状態は停滞であり後退である。

どんどん痩せて来てぐったりしている私を見て夫はオーストラリアへの旅を取りやめてしまった。「アチャーしまった、済まない」という気持とは裏腹に実はほっとしている。意志や根性でどんなに頑張っても、どんどん痩せて来て体力も気持も萎えて回復がおぼつかなくなりそうだし、今は私の手足になって動いてくれる人が必要だ。それを１日８時間仕事のある息子に頼むには無理がある。

気怠くて身体が動かないのでボーッとしてテレビを見る。Thanksgivingの終わった米国ではクリスマス商戦が姦しい。家具などの大きな買い物だと「２００８年の１月までは支払いの必要なし。利子なし」というコマーシャルが頻繁に流れる。去年までは何の疑問も感じなかったのだが、今は１年後に自分がどうなってるかなんて分りゃしないのにと不思議な気持になる。