kuwachannの日記 - 食道癌治療・回復の記録

2006-11-28 J-tube is out!

[][][][][] 12:23


It is truly interesting that exactly two months after the surgery I started having a serious infection with J-tube. Suddenly the foul smelling pus started oozing out of the insertion site, soiling my clothes.

Is it Murphy’s low or what? Medical emergencies always happen over the weekend. The doctor on call suggested that I go to the emergency room, but I decided to stay put till Monday and to take only the antibiotics.

I had been contemplating removing the J-tube all together for a few days anyway.

After consulting with BWH’s surgeon, my oncologist removed the J-tube in a second this morning. It was an unbelievably easy procedure, and I did not feel anything. The tube that came out was very long and narrow, and disgusting looking (I should have taken a picture). According to him, the insertion site is supposed to close in a matter of a few hours, and I should feel much better; the tube actually taxes the patient’s body heavily even though it serves as a lifeline. I am excited because I will finally be able to lie on my left side after 6 months of restriction.

In spite of my feeling that I hit the bottom of my health, he was quite happy and cheerful, and said, “ you are doing very well. You should carry around a snack bag all the time for a while, now that you are on your own.”

According to him, most esophagectomy patients lose at least 10 pounds, which will become their new weight baselines, and I have to be careful not to lose any more weight. OK…my new figure is that of Audrey Hepburn, then? I should go to the GAP, buy a new pair of “slim pants,” and make all the teenagers envy my figure.

When I saw the BWH surgeon, his primary assistant surgeon boasted, “no matter how long it takes you to regain your eating ability, you will be OK because you have a J-tube, be it three months or a half year.” His statement betrays the limit of a young surgeon’s understanding of the human body. Your body is not a machine; it rejects foreign objects, because it tries to heal by itself. I loved his unequivocal belief and passion in science, but hope that he will open his eyes to the mystery of life more.

Even though the infection was not really a big problem, you panic anyway. I am so thankful that Mark decided not to go to Australia at this time.

Come to think of it, probably this was a humbling and defining moment of our relationship going forward. Precancerous day I must have thought it was crazy that Mark cancel a professional conference on my behalf, considering it heroic that I perceiver the difficulty no matter how big it is. Well, actually it may be more heroic to admit that you need help, and accept another’s sacrifice. I hope that he would do the same to me (not in this kind of context, of course.)

In reality, however, Mark had to waste one full day to reschedule his trip in summer 2007, and pay an extra 500.00!!

あんあん 2006/11/29 07:49 どんなにつらくても夫の邪魔をしないことが勇気のあることなことだと思っていた。だけど自分の弱さを素直に認めてパートナーに頼る決定をすることの方が実は勇気が要るのだ。―――この言葉、もらった。感謝。


nikuniku 2006/11/29 08:25 なかなか「行かないで」とは言えないよね。その気持ち私もよ〜〜くわかる。でも、ご主人のお陰で絆が深まってほんとによかったね。
命綱は必要でなくなったと自ら教えてくれたんだろうね それにしてもすっきりした気分が伝わってくるよ! おめでとう〜!そして、新しい体重こんにちは!だね

若てげ若てげ 2006/11/30 10:48 なーんか晴れ晴れとした雰囲気が伝わってきますね。Jチューブのことは分からないけど、先日足に刺さった棘をピンセットで器用に抜いてもらった。あれは爽快感がありましたね。こちらは、季節の変わり目に雨に濡れたのがいけなかったのか、松阪牛の霜降りを食べ過ぎたのがいけなかったのか、急性胃腸炎で悶絶。平日会社を休んだのはおそらく始めて。年齢を考えなさいということかもしれない。Kuさんもゆっくり、徐々にね。体をビックリさせてはいけません。

puyotapuyota 2006/11/30 14:22 素直になるって難しいですよね・・・長い付き合いになればなるほど。この日記を読んで、はっとさせられました。

RumiRumi 2006/12/01 03:49 「ひもつき」じゃなくなって、おめでとう!命綱ではあっても、異物は異物、ですね。といえるのは比較的健康だから?逆に、異物ではあっても、命綱だから必要、という段階もあったのでしょう。医者も患者も、選択の余地がある時が却って難しいということでしょうか。とにかく、よかったよかった!

kuwachannkuwachann 2006/12/01 10:56 晴れ晴れした気持って伝わるものなんですね。チューブを抜いただけで2割増は元気になりました。Rumiさんがおっしゃるように多分身体が元気になったから異物になったんだと思います。術前元気になった時もチューブは調子が悪くなっていて、手術の時に再挿入をしましたから。

2006-11-16 brooding 鬱っぽい?

[][][][][] 12:18


The weather in New England has been gray and dark, and it is affecting my mood a lot. I have had difficulty dealing with cold and dark weather every year, maybe because I was born in a subtropical climate in Japan (My home town’s latitude is as south as Georgia.) However, it is affecting me more than usual this year, probably because of the monotony of my life with no apparent improvement in my eating training and gaining stamina. All in all, it is accurate to say that I am feeling quite low, and suffering from the post-operation- depression, in spite of the fact that I worked on an interpretation assignment successfully for an institutional investor last Friday.

The client was satisfied with my performance, I imagine, because he wanted my name card for the next opportunity, and asked me to keep the confidential presentation material for the future.

Even though it was only a 3-hour assignment, it was exhausting, and my incision started hurting very badly, and I had trouble controlling my cough. Rather than elated with satisfaction, I was convinced that I could not work for at least for another month, and wondered if it is possible to continue doing this line of work in the future.

Fearing that I am losing my optimism, I had Mark check out “It’s Not About the Bike: My Journey Back to Life” by Sally Jenkins from the library, the book about Lance Armstrong who has won the Tour de France six times after conquering the terminal stage testicular cancer. It was a very-easy-to-read book, and I could empathize with him a lot. But what I got from the book is that I have to go through this depressing and lonely part of my journey by myself; Lance himself went through the period when he simply played golf, not knowing at all whether he wanted to make a comeback.

This reminds me of the “grief cycle” theory; when facing a loss and life changes, people go through four stages: shock & denial; anger, resentment & depression; coping; and acceptance and moving forward. Where have I been and where am I now?

I was tremendously optimistic and forward looking right after the hospital discharge, because I was still in shock and denial; I accepted the interpretation assignment when I was doped up with narcotic pain killer. Now the anger and resentment have sunk in. I am angry because my body is still full of chemicals from the chemotherapy, anesthesia, and painkillers, and feeling the effects. I am angry because people assume that I am now back to my old self. I am angry because patients who suffer other types of cancer can keep working at least part-time, because their treatment is not concurrent chemo/radiation. I am angry because people only praise the forward looking and courageous mentality and behavior, and do not appreciate the necessity to weep and curl in the fetal position (and simply think that you should go see a shrink.) I am angry because this monotonous eating training seems to stretch on forever, at least for a half year. I am angry because I still cannot drive. I am angry because nothing tastes good, and I have to cook for myself. I am angry because I do not have agility and energy to pick up and clean up the mess in the house….

When you are stuck and cannot find significant changes internally, changes can be forced from outside. My oncologist told me yesterday to stop using the J-tube for a few days, because they did not find any problems in the modified barium swallow test; food is going where it should go, and the discomfort I am feeling is nothing unusual for the patient who went through the esophagectomy. He thinks that it is best to take out the J-tube as soon as possible because I have had it for such a long time, and actually I have been experiencing pain around it inside the intestine.

I have been feeding myself between 1 can and 1 1/4 cans for the past few days, because of the difficulty maintaining my weight. No matter how much (I thought) I ate, my weight kept going down. His advice was “ do not eat too healthy”: I tend to eat low carbo, protein rich and vegetable centered meals, which is not too beneficial when you need to gain weight. I need to eat like a professional bike rider before the race; a lot of carbohydrates. I will see whether I can maintain my weight without the J-tube intervention.

Another small change in my life; A few days ago, I stopped taking the pain medicine all together; Tylenol and Ibuprofen. It was difficult to stop because it was one of the rare comforts I had, and was like fighting with the addiction, I imagine.

nikuniku 2006/11/17 13:11 ご主人の海外出張?心細いかもしれないけど、くわちゃんは一人じゃないからね。

fuu~fuu~ 2006/11/17 20:06 くわちゃんにとって夫の存在は本当に大切なんだね。じ〜〜〜ん。夫がストレスの元の私とえらい違いだ!

若テゲ若テゲ 2006/11/17 23:02 ブログが更新されないから、多少心配していたけど。そりゃ、そうだなと妻と話していた。手術までは明快なプログラムに沿って、具体的なゴールに向かって優秀なコーチに支えられて走っていたのに、術後は、自立力は格段に獲得したとは言え、プログラムもゴールもあやふや。ひとつのレースの終わりが次の始まりで鬱になるよね。ところで、ご主人は何日家を空けるの。長男が自宅通勤って聞いて、こっちは少し安心してます。でも12月は自分のことで大忙し、きっとそうだよね。やっぱりブログでも電話でも思い切りぶちまけるのが特効薬に違いない。

kuwachannkuwachann 2006/11/18 00:02 夫はおよそ1ヶ月いなくなります。(その後3週間いて、また1ヶ月いなくなる)で、fuu~ちゃん、たしかに夫は大切な存在ではありますが、非常に具体的なことで心配しています。米国の郊外は車なしでは生活できないのに車の運転ができないとか、塵だしとか、トイレの掃除とか。。。実は毎日1.6キロ歩いているのですが、まだその後必ず昼寝が必要なので、買い物そのものだけで体力を消耗するだろうと思うのです。長男はとても優しいのですが、私の豚汁を勝手に食べてしまう奴ですから、コミュニケーションだけで疲れるかも。ウチの掃除は無理なので、多分お掃除オバさんを雇うことになるかな〜〜

fuu~fuu~ 2006/11/18 00:20 家事はどーーんと手抜きを決め込んでいいんじゃない?私は食料品はここのところネットを使って宅配してもらってます。掃除も人が来るとかえって気を使い疲れることもあるし、最小限にして、この際息子くんに頼るのが一番かも。彼にもいい勉強になるでしょうし。まだ豚汁のウラミ残ってるね…。

RumiRumi 2006/11/18 02:11 検査の結果、新しい食道の機能がOKというのは安心です。回復速度が気になる、落ち込みがち、というのは、想像に難くありません。一番大変な期間かもしれませんね。怒りやいらいらを感じる自分を責めないように!

ミッキーミッキー 2006/11/18 10:32 ご主人が出張を取りやめるかどうかは、よく相談して決めた方がよいのではないでしょうか。ご主人の仕事の妨げになりたくない、という気持ちはよくわかるけれども、ご主人の留守中に何かあったらもっと大変。買い物、診察、掃除、etc. 仮屋さんが気にしている日常の用事について、家族全員で誰が何を分担して、何を誰に頼むか、を皆で相談したらいかがでしょうか?その上で、ご主人が「今回は出張を取りやめる」ことにしたとしてもそれは彼自身の決断であり、家族全員のコンセンサスとなります。

kuwachannkuwachann 2006/11/19 11:26 Rumiさ〜ん、今年はこっちは大丈夫でした。去年は地下が洪水。浸水1フィート以上で、地下の内装を全部やり直し、ポンプを入れるはめになりました。実は今もポンプが水を外に出してる音が聞こえます。地下浸水が少しでよかったですね。絨毯クリーニング用の掃除機を「この際」っていうんで購入して、濡れたところをバキュームしてしまうといいかもしれません。

samesame 2006/11/19 12:36 わたくしヨメさんにとっちゃダメ夫、母親にとっちゃダメ息子ですが、イザッという時にゃやりますよ。きっと。....たぶん。息子さんも大丈夫。だからなんとかなりますって。

kuwachannkuwachann 2006/11/21 03:19 sameから始めてキミっていわれたかも(ぷっ)サメのエプロン姿を想像するのは怖いけど、まいいだろう。マツザカ関連の仕事の予想されるころまでにはガンガンに元気になってたいな〜〜



[][][][][] 12:06


This Blog is about eating, sleeping and walking, which are occupying my days recently.

It has been full two weeks since I started eating “somewhat” solid food. I have been feeding only two cans of food for the last few days, and expanding my menu quite a bit. It is wonderful that I can eat cheesecake and pumpkin pie without guilt.

Some dishes that I have cooked last week (yes, I actually cooked with Mark’s help) include Japanese Miso soup with pork (wonderfully nutritious dish with miso and ground pork with a lot of minced vegetables) Mediterranean fish soup with cod and vegetables, Chinese Maaboo tofu (spicy Chinese tofu dish), and over-cooked pan sticker, etc.

I am grateful that moderately spicy food does not bother my esophagus. As long as I can taste flavorful food, it does not bother me how small the amount is or how long it takes to cook. My days are spent racking my brain thinking what I can cook for dinner, concocting it, and eating a tiny amount of it very slowly. Even though many patients at my stage seem to supplement the nutrient with commercial protein shakes, I cannot do it; I do not like sweet drinks or ice cream that much. My aversion to shakes may help me get back to normal food fast.

Even though my recovery is going quite well, I am suffering from insomnia from hot flashes, which probably are caused by the forced menopause and J-tube feeding. The menopause was accelerated by the combination of chemotherapy, radiation, and surgery. J-tube feeding at night makes my metabolism fast and raises my body temperature. It is very frustrating to stay awake at night when you feel that you should be sleeping; I used to be able to fall asleep immediately and sleep through the night without any problem. I hope that by the time my J-tube comes off, I can sleep a little better.

Since the middle of last week, I have been walking a mile a day. As the weather is getting cold and nasty, I often walk in the shopping mall. Walking in the mall has an advantage and disadvantage. The first time I walked in the mall last week, I found a “sushi chef” nutcracker (photo on 10/26,) and had to buy it. Since I have not gone to the stores for a long while, my immunity and resistance to the shopping impulse seems to have weakened.

The photo is the Pedometer that Mark got for me from LL Bean. This is helping me keep track of how far I have walked.

RumiRumi 2006/11/02 04:03 すてきなpedometer (万歩計って言うんですか、今でも。。。)ですね。ホットフラッシュは仲間がたくさんいるはず。。。早めに来てしまったのはちょっと残念ですが。食べることの大変さ、想像するしかありませんが、色々な味のものが食べられるようになってよかったですね。

kuwachannkuwachann 2006/11/03 01:03 Rumiさん、治療の前もホットフラッシュは少しはあったのですがひどくなったようです。食事をつくることは、リハビリのちょうどいい作業のような気がしますが、車を運転できないのが難。夫に材料リストを渡して買って来てもらう毎日です。

2006-10-18 Weaning


[][][][][] 12:01

10/17/06 (日本語を後にいれました)

On Monday I went back to BWH for the post surgery check-up. The infection has cleared nicely, and everything else is going well. It is amazing how quickly the scars are healing.

“You can eat anything you want,” the surgeon announced. “Anything?” I could not believe my ears.

Since we had about 45 minutes before seeing a nutritionist, Mark and I sat down at Au Bon Pain and ordered a sandwich (for Mark) and vegetable soup. Even though I was told that I could eat anything, it was scary to eat anything chunky. I ate mostly the soup broth with a few minced vegetables, chewing very carefully.

I am glad that I was cautious, because we discovered from the nutritionist that there are quite few stipulations about what not to eat for the first few week; I can only eat very soft vegetables, I have to be careful with dairy products, it is best to avoid chicken, etc.

What I have to balance now is how to wean myself from the tube-feeding. The nutritionist suggested starting with one less can. Unfortunately, I was not feeling too well last night, so I reduced the amount of food by half a can, and started eating some soft food. What I learned is that if I do not reduce the tube feeding enough, I do not get hungry.

Total food I have eaten so far today is; One scrambled egg, brown rice gruel (1/3cup), yogurt (1/2 cup), banana (1/5), 1 slice of cheese, 1/4 cup of vegetable rice soup. Since I do not get hungry at all, I went out for a 1/2-mile walk in the rain. I am planning to reduce the canned food more tonight.

Another weaning happed today. I was “discharged” from the visiting nurse. She has been visiting me every week since my J-tube insertion in June. “You are one of the quickest recovering patients, and I am confident that you can manage your health from now on. I won’t be visiting you anymore. Sign here.”

With these weaning milestones, I finally feel that the end of this journey is near, and that I should start preparing for a normal life, post-cancer-version; work, hobbies, exercise, travel, and service to others.

At BWH a doctor who works with my surgeon as his chief assistant, and who participated in my J-tube insertion as well as my esophagectomy, explained to me what my diet would be like. He started by saying, “You are a patient who reads a lot, and you probably know all this…” I somehow felt embarrassed that I had given such an impression to the doctors. “Well, I could not help it. You can find so many articles on the Japanese internet because this is the 6th most common cancer in Japan.” “No, no, I am saying that in a good way. It is good for you to gather information.”

Thanks to my friends, some of whom are doctors themselves and others of whom have strong insider connections to the Japanese medical establishment, I was blessed with up-to-date knowledge about this cancer. For my doctors, however, I could have been a patient who is difficult to deal with.

“Everything went well, no cancer cells were found in the esophagus or in the removed lymph glands. You belong to the group of patients who will most likely survive the cancer. Statistically the survival rate is 50%, ” the surgeon said and left. It is sobering to realize that esophageal cancer is still a very difficult cancer compared to some other cancers (stomach cancer in Japan has more than a 90% survival rate, for example.)

I would have been dismayed to hear the number 50% in my pre-cancer days. With my cancer experience, however, I feel that anything can happen to us in life, and that we simply have to deal with each thing one at a time. 50% is not a bad number.

こうかこうか 2006/10/18 19:07 cancerへの細心かつ大胆?な対応が、これまで、比較的うまく運んでいる。と解釈していいでしょうか。

RumiRumi 2006/10/19 22:55 以前このブログで教えていただいたナオミレーメンの言っていた旧約聖書の中のお話しに、慣れ親しんだ奴隷のアイデンティティを捨て、未知に向かうことの難しさ、というのがありましたね。病気治療中は、もちろん全力を尽くして患者として優等生になることが最高の、場合によっては唯一の選択だけど、オール・クリアーを宣言された今は、そのアイデンティティも捨てて、サバイバーとしての新しい日々が始まるんですね。そのうち年月がたって、そのレッテルもだんだんぼやけてくるんだと思います。色々勉強させてもらってます。ありがとう。まゆみさんの新しい日々に乾杯!

kuwachannkuwachann 2006/10/20 23:51 Rumiさん、回復時には回復時なりの不安とチャレンジがあるとしみじみ感じています。私の経ている経過は、病気でない人が何気なく日常の中で経ている経過と同じなんだけど、ちょっと濃縮されて変化が大きいということですよね。先日このブログの一番最初を読み直してみました。色々あったんだなとしみじみ感じ入りました。

kuwachannkuwachann 2006/10/20 23:53 こうか様、今はウールのソックス、帽子、ダウンのコート、手袋で散歩に出掛けています。今日は暖かですが、数日前には霜も降りました。



[][][][] 11:39

Tomorrow is the surgery day, and I am ready.

During the past few days, Mark and I spent time in Maine. My esophagitis is cured almost 100%, and we could go out to restaurants and enjoy meals. According to Mark, I have been eating like a horse. Since I am eating so well, I stopped using the J-tube and still managed to gain 2~3 pounds. Now I am back to my normal weight.

Up in Maine, where LL Bean and other factory outlets are only 30 minutes away, I purchased two pairs of activity pants from GAP, a pair of overall pants from OshKosh (boys’ size 14/16), and a pair of cute “cat” earrings for after the surgery.

Yesterday we put cement blocks underneath the top bed legs here at home, and created a slanted bed surface of about 15-20 degrees. In the surgery, the surgeon removes the esophagus and re-creates the esophagus with my stomach, and I will lose the stomach function and the valve between the esophagus and stomach. Without the slanted surface, the stomach acid will regurgitate up to my mouth. By elevating the headpost of the bed, I do not need to use extra pillows to prevent this.

I feel sorry that Mark has to get used to this new way of sleeping, but it might work a miracle for his snoring problem. At least I did not hear a thing from him last night.

The photo is the pair of slippers I bought for the hospital stay. In August when I was feeling very sick, I dreamed that I was climbing up a steep hills with sure and steady steps. After that day I started feeling better. In the dream I was wearing red sneakers. The color is not quite red, but will do to remind me of those steps during the recovery period.

I have been receiving tremendous support from my family and friends. I feel sorry that I could not send you the thank you notes now.

Thank you very much for your support and prayers!!

We decided that Mark will keep reporting on my situation in this Blog site. One page covers 5 entries. If you click >前の五日分 on top of the page, you can go back to the previous page.

If you have comments, please send it to my Email: lincicome@charter.net

若てげ若てげ 2006/09/26 06:34 そうか!赤い靴が夢の中でKuwachannを救ってくれたんだったね。こいつは縁起がいいや。さて12時間後ですね。日本から念力送るからね。

ひ 2006/09/26 07:32 いよいよだね。

gyokugyoku 2006/09/26 07:58 10時間の手術でも麻酔するからあっという間、待ってるマーク君の方がつらいかも。でも覚めた時からがまゆみちゃんの勝負所。すごくつらいけどがんばるんだよ。泣きわめいても醜態さらしてもかまわないから、絶対に乗り切らなきゃだめだからね。お見舞い行くよ。

RumiRumi 2006/09/26 09:18 時間をみながら祈ってます。回復期も順調でありますように。ライフ・フォースを信じて。

あんあん 2006/09/26 09:46 うんうん、念力送る!

ねこねこ 2006/09/26 14:07 念力・・海を越えて、じゃなく、マグマを突き抜けて地中から放射したぞ〜。

fuu~fuu~ 2006/09/27 09:12 いいスリッパだ。確かな歩みを信じます。