kuwachannの日記 - 食道癌治療・回復の記録

2007-01-03 A closure and celebration, sort of

kuwachann2007-01-03

[][][][][] 20:32


Just before starting chemotherapy and radiation treatments in June (June 25 entry,) I invited four couples to come to my house, who are our very important friends.


Rachel Naomi Remen, the author of “Kitchen Table Wisdom,” wrote about the rituals that she recommends to the people who are about to go through the surgery or difficult treatments.


In her book she recommends the ritual for which friends and relatives of the patient bring a rock, talk about some personal crisis of any sort, and share with the patient how they survived the difficulty. Some may say that they survived thanks to the power of faith, and others may say that the power came from humor. At the end of the ritual they give the rock to the patient while naming their source of strength.


In June, these people shared with me their most private moments of their lives and painful struggles, along with the rocks they brought, while it was difficult for them to do so. Most of the stories are the ones that are shared only among family members, only through shared experience and tears without the words. I absorbed their stories and wisdom as though I were drinking water from the Fountain of Youth.



I will never forget their stories.

They have become more important friends for Mark and me, with whom we can now share our private thoughts more than before.


They helped our family not only mentally, but also with practical aspects like meals, driving, invitations for concerts, and a warm quilt. (I should add that I received tremendous help from other people too.)


Even though it is still difficult for me to eat some dishes and I probably still have to go through multiple dilation procedures, I have become an optimistic survivor with their help, along with the help of you who are reading this Blog. We all worked hard to earn the closure of a chapter we started together in June.


Last night, we were a bit giddy and silly while being serious. Why not, it’s New Years? We deserve a party. A new life starts over the closure of another.

ミッキーミッキー 2007/01/05 10:18 まゆみさん、約束どおり、Rachel Remenの本を買いました。そう、Kitchen Table Wisdom。日本語化して出版する交渉しない?私もぜひ翻訳したい1冊だし。
「治療に向かってあがいている時期」が過ぎて本当に良かった。今度は「完治に向けて努力を続ける」時期だね。でもその努力は一生続けることになるかも知れない。でも一生の定義って難しいとつくづく感じます。100歳まで生きても一生だし、明日交通事故で死んでも一生だから。いつまでが自分の一生かがわからないのが難しい。だから毎日毎日を大切にしたい。

kuwachannkuwachann 2007/01/06 05:47 ミッキーさん、残念ながらもう翻訳されています。私もぜひ出版社に連絡して意気込んだんですが。。。上のリンクに情報がアップされています。
ほんとに「今」を素直に生きたいと思います。

RumiRumi 2007/01/09 05:14 ごぶさたしております。遅くなりましたが新年おめでとうございます。まゆみさんの去年半年間は「永遠」に終わることのなさそうな時間に感じられたこともあるでしょう。本当にお疲れ様でした。ブログのおかげで、その強さを分けていただいたような気がしています。今後も何度かあるという拡張手術も、その前後のケアなど、充分注意してくださいね。May peace be with you. Rumi/

kuwachannkuwachann 2007/01/10 00:38 Rumiさん、お帰りなさい。今週は復帰後の最初の仕事。一日置きに仕事をしています。結構ヘロヘロですが、頑張ります。

2006-09-19 pre-op examination

kuwachann2006-09-19

[][][][] 11:33


9/18


Almost 70 hours after leaving Boston, I received an Email from Scotland;


“Dear Mom,

Sorry I didnt call, I cant get the phone card to work, and I dont have

internet here yet, Im using someone elses computer for this message.

Everything is fine I'll send another message when I have internet.”


Even though my gut was telling me that my son was OK, it was a little unnerving not to hear from him for such a long time, particularly because we gave him a calling card with instructions to call us as soon as he gets there.


Well, this was probably the first time he said “sorry” outright to us.


The pre-op examination went very smoothly. When the nurse practitioner, who examined me, told that I had gone through a lot since the last surgery, I was shocked to realize that this summer was really a tough one.


It may sound strange, but I almost forgot all the pain, discomfort, and tears I went through, because I have been so delighted by my recovery and healing during the past two weeks.


One of the reasons why it did not hit me that this summer was hard, was due to the wonderful gifts we received from our friends, one of which was the twice-a-week dinner delivery. The delivery continued from day one of my chemotherapy, which was the last week of June, to the middle of September.


My friend, who herself went through foot surgery over the summer, coordinated who would bring the meal every week. Every dish was wonderful, and it was great to be able to talk to the friend who brought the meal (when I could do that.) I enjoyed every bit of conversation with my friend.


How could I have imagined this outpouring of kindness from friends and the community? Having been raised in Japan, where this sort of task falls on to the woman of the house as a duty, i.e., mother, daughters in law, sisters, or sisters in law, this was shocking, and made me realize that my family has been a member of the community for a long time.


It was a huge discovery to realize that the community is not a static object, but an active organism, and that you can be an active participant not only as a giver, but also as a recipient.

若てげ若てげ 2006/09/19 22:42 術前検査が一日がかりでも、ブログ更新の余力充分に有りってこと。とっても有りがたい。多少一時的に髪が抜けても帽子がある。そうこうしている内にまた生えてくるし。若てげは若はげとちゃうけど(=歳相応の分量は維持しているつもり)髪増えれば銀座でもてるのになー。
ところで、何故8時間の手術になるか了解。10カ所ぐらい小さく切り身を入れて胸腔鏡をいれて手術をするのね。なるほど。長いけど回復は早いぞ!

koukakouka 2006/09/19 23:37 どうぞ、ご自愛くださいませ。
応援しています。

samesame 2006/09/20 00:20 おっ、帽子も似合ってまんがな。次回の土産はこれで決まり!

kuwachannkuwachann 2006/09/20 11:55 野球帽は、つばの深さとか色で野暮ったくも格好良くもなる。結構楽しいです。Red Sox のは普通濃紺に赤でBなのですが、same の色の好みは何だろう?現在東京には4月に行く予定だよ。

えみかえみか 2006/09/20 16:45 キャップすごく似合ってますね♪素敵!!憧れのベリーベリーショートです、一生のうちに一度してみたいと何年も思っています。

私の上の息子は高校2年ですが、同じく連絡を取る事をしませんね‥何の為の携帯電話なのか分からない??(笑)
きっとあっという間に来るであろう旅立ちを想像してちょっぴり寂しく感じました。

先週金曜日に主人、土曜日に父も帰ってきました。父は3ヶ月振りの帰宅です。2度目の放射線抗ガン剤治療後の検査は月末です。くわさんが切除してすっきりした後に結果が分かります。手術の方法も日本とかなり違うのですね。女性だから尚更傷は小さい方がいいですよね。
内視鏡で炎症がおきて狭くなった食道を広げてもらったので食事制限無しですがやはり普通より狭いようで軟らかい物を食べています。

kuwachannkuwachann 2006/09/22 12:18 髪の毛が抜けるってことは、眉なんかにも影響するし、全然手入れをしていないので、なんか情けない顔になってます。
昨日は猫のかわいいイヤリングを見付けて買いましたが、4ヶ月ピアスをしていないので、手術開腹後にまた穴をあけることになりそうです。(術後しばらくは大変だろうけど、そういうことも目標にしようと思っています。)
御父様3ヶ月も入院だったのですか。こちらは、食道全摘でも2週間弱の入院。医療システムが全然違いますね。御父様、抗がん剤が全部身体から出て、放射線の炎症がおさまると、自然に食欲が出て来ると思います。宜しく御伝えください。
ご主人、御父様の退院は嬉しいニュースですが、又別の大変さがありますよね。御疲れにならないよう。
我が家の息子からは、携帯を購入したという電話が来ました。我が家は夫も私も自宅(自国)を飛び出してしまった輩なのですが、自分の子供のことは当然だと思いながらも心配しています。

2006-09-15 Trivial pleasure

[][][][] 11:25


9/14(日本語は後に続きます)


We have been busy for the past two days in a very normal sense. My son who is a college junior is leaving for Scotland for a year on Friday, and Mark and I are trying to help him (actually yell at him, in my case) to tie up loose ends.


We just came back from the mall, after purchasing a cheap set of suitcases for him. We are going to a local breakfast place tomorrow morning, the place where we used to take our sons when we needed to talk during their teenage years.


Trivial things give me an utmost sense of happiness. It is precious to be able to go shopping for my son with Mark without feeling tired, and to be able to go out for breakfast to really eat! In a very strange way, I am grateful for my state, because I can truly find happiness in small things.


In corporate America, the chairwoman of the board of HP (Hewlett-Packard), is under scrutiny for spying on its director’s personal phone records as well as journalists to find out who has been leaking the inside information to the media.


The Chairwoman, Patricia Dunn, while working on the board, suffered from breast cancer (2000), melanoma (2002), stage IV (terminal) ovarian cancer (2004), and a malignant tumor in the liver (operation only last month.)


Her will power and tenacity must be a thing to admire for many people. I feel sorry for her, however. It is awful to get a malady like cancer, but it makes you pause to look at things differently, to appreciate things more, and discover that there is so much goodness in our lives. You rediscover your family, your friends, nature, and your own strength. It does not mean that you are weak if you take a leave from your work.


I hope that she will have a few moments to pause and feel this new appreciation in spite of her state now. She has fought so much with the disease.


I went to a barber yesterday, the one that Mark goes to, and had him cut my hair very short, a crew cut. While cutting the hair of the customer before me, the barber was talking with him about a customer who was recently diagnosed with stage IV lung cancer. Consequently it was a little awkward to ask him to cut my hair for my upcoming surgery.


Is it only us who feel that cancer is like epidemic these days? Everywhere we go, we seem to hear someone has fallen to the cancer.

RumiRumi 2006/09/16 05:13 息子さんの留学前夜の忙しさ、ほほえましい情景です。そういう忙しさなら、大歓迎ですね。帽子はどんなのが好みですか?

kuwachannkuwachann 2006/09/16 11:11 夜9時出発の飛行機。ウチを出るぎりぎりまで、アタフタしました。夫と空港まで御見送り。色んな国に行ったことのある息子だけど、一人旅は始めて、かなり緊張していました。
私にとっては、4月まで毎月のように使っていた空港。使い慣れたトイレに行って4ヶ月以上も仕事をしていないことを実感しました。空港の売店のラベンダー色のレッドソックスの野球帽を購入。暫くはスカーフや帽子で遊ぼうと思っています。顔が丸いから毛糸の帽子は余り似合わないけど、寒いと仕方ないよね。色で楽しもうかなと思ってます。

若てげ若てげ 2006/09/16 21:23 とうとうDも旅立ちの日を迎えたんですね。スコットランド最古の大学でいろいろな出会いを経て、大人になって帰ってくることでしょう。まさに今から人生がスタート。春秋に富む青年の冒険を応援してるよ。

ねこねこ 2006/09/17 01:16 次男さんの旅立ちおめでとう。寂しさとエールと・・。その昔の故郷のご両親のお気持ちが、ひしひしと感じられたのではありませんか?大丈夫、kuwachannの息子さんだもの。前へ前へ。。

kuwachannkuwachann 2006/09/17 21:59 無事到着の電話もメールも来ない。大丈夫だとは思うけど、ったくもう。。。手術前の元気な状態で送り出せたことが一番幸せでした。

2006-09-11 Image training and Vietnam

kuwachann2006-09-11

[][][][] 11:21


9/10


To get well and to feel more energetic means wanting to see and talk to people, in my case. It is wonderful to see my precious friends. On Thursday, two senior consultants (a couple), with whom I worked for two years, came to see me and we had a wonderful time together. She brought along a home cooked meal! Having some idea about her hourly rate as senior consultant, this dish is one of the most expensive meals I ever had at my house!!


On Friday, Mark and I went to a Vietnamese restaurant to see a couple, who are among our best friends; she is leaving for Vietnam in a week to finish her documentary film about Vietnamese women soldiers (female Vietcong) during the Vietnam war. I prepared a gift for the Vietnamese woman whom I met through her some years ago: a postcard booklet of Diego Rivera’s work from the San Francisco Contemporary Museum of Arts.


Before embarking on creating the documentary film, my friend wrote a book about these Vietnamese women, their suffering during and after the war, and invited this woman, who was the central character of the book, to the US. She, who is exquisitely beautiful, tranquil, and strong, had several speaking engagements, to one of which I went. In addition, my friend was kind enough to invite my husband and me to her house so that we can intimately talk to her.


I remember how quickly I felt connected to her, and felt that I understood what she went through during the war better than most American people. I felt the pain and passion, the reluctant but determined choice those women had to make to defend their land, because it was their land and their homes that were being destroyed. Probably that clear understanding came to me from my collective memory as a Japanese, who, even though they are considered to be aggressors in world history, include many children and women who were simply victims of the war.


Thus, I understand why she was talking about forgiveness and letting the animosity go, and why she was calling for world peace. The devastation, loss, and sadness that they experienced were too enormous for them to linger and to be bitter about.


Turning the clock back to now…


Even though I am getting quite settled about the idea of surgery, a part of me was questioning whether or not to order the image training tapes for the procedure. One wants to be equipped with enough ammunition, and also everybody says that it is a good idea to do so.


Preparing the gift for the Vietnamese woman, I was murmuring the words, “a reluctant but determined fighter,” without realizing what I was doing.

That’s it! I will have her beautiful and calm face as my guiding image for the surgery, together with Gandhi.


****

Vietnam is a very special place for me. When our family went to Vietnam in 1998 by boat, we were welcomed (assaulted?) by begging children as soon as we landed. They all had low quality postcards in their hands, and begged, “one dollar, one dollar!” When we ignored them, they would say “why?” with wonderful timing and big shining eyes, making us feel guilty about ignoring them.


It was such a calculated and orchestrated act, and you feel sad all the more. It is a Vietnamese cottage industry, but the fact remains that these children are orphans or ones in similar states, and that this is their only means to earn living.


As soon as I encountered these children in Saigon (Ho-chi-min city), I felt like watching the phantoms following World War II in Japan; Japanese children who begged for candies and chewing gum from American GIs. Also the wounded old soldiers who lost their legs and arms, who were crawling along the dusty street, or riding a handmade wooden box car that functioned like a rudimentary wheel chair, reminded me of Japanese wounded soldiers in white kimono, who were asking for money on the street corners of my hometown when I was a child.


While we were there, we visited the Cu Chi tunnels in the jungle, which the Vietcong dug for communication and to take shelter against US attacks. It was somewhat exploited for the tourism, but its narrow passages under the ground, right next to a huge crater created by American bombs that is now covered by lush tropical vegetation, were eery.


It was the first time I physically realized that censorship exists in the US. When we went to the War Atrocities Museum in the city, which exhibits remnants and facts from the Vietnam War, many professors who were with us were surprised to discover things they never learned in the US, but which had been covered by Japanese TV news during the war.


At the same time, I was surprised to find that the propaganda which had been used by the Japanese student movement in the 60s and 70s were among the exhibit captions displayed on the museum’s walls, now under the administration of the communist regime. The activists in those days were simply mouthing the slogans invented by the communist party. How fragile are “facts” and “information,” not to mention the truth…

2006-09-07

[][][][] 11:16

9/6

I went to see my radiology oncologist for a check up today. He quoted Tolstoy, and talked about Dostoevskii, Chekhov, and Mark Twain. According to him, descriptions of characters in those novels describe the stages of disease accurately, reaching beyond cultural boundaries.


I never know what he is talking about at first, but he is extremely knowledgeable and interesting to talk to.


My nagging question has been why I have to go through life-altering surgery when the PET scan shows no cancer cells in my system.


He said while smiling, “as soon as the surgeon saw you, he reserved a (operation) table for one.” I am the best candidate for the surgery because I am young, very fit otherwise, and because my cancer is at a curable stage. He added that if they were thinking of chemo/radiology treatment alone, he would have given 7200 Cent Grey of radiation (My dosage was 5040 Cent Gray.) Thinking about that alone makes me shudder.


Well, OK…so, it was a good tiding that I have to go through the surgery. Even though I knew it, it was nice to hear that from him this way.


Actually I was surprised by my own words toward a faculty member at Mark’s college yesterday. Without thinking I was saying to her, “I am resigned to accept the life altering effect of the surgery. I will be a little handicapped, but I will move on and live with it.”


Somehow, I seem to have processed the surgery and its effect quite well inside my mind, but today’s talk was an added bonus to that process.


The doctor added that I might have suffered more than Caucasian patients due to my ethnic characteristic of low enzymes to process the chemo toxin. To my question about whether there is any difference between males and females regarding chemotherapy side effects, he answered that gender differences as well as enzyme characteristics are the issues that modern medicine has just begun to look at.


On the way back from his office, we dropped by at Trader Joes, an international grocery store. There I found “Mochi ice cream”, an ice cream wrapped inside Mochi (soft rice cake.) It was very very good.


My esophagitis is getting better everyday. Today I ate a little bit of quiche and shrimp Shumai in addition to the ice cream. It is wonderful and empowering (not an exaggeration) to be able to eat!


PS:


Mark’s department gave me a beautiful powder blue bathrobe to use during my hospital stay. Why are people so nice? I know this is a completely wrong expression to describe my gratitude, but don’t know how else to describe my awe. This is a gift of love to both Mark and me. It means so much to us.

nikuniku 2006/09/07 12:41 くわちゃん!
ゆっくりね、ゆっくり! 
今までの分を取り戻そう〜なんて考えたら絶対だめだよ 笑

samesame 2006/09/08 00:38 なかなかいい按配なようで、安心。
ところで加治木饅頭ってどんなの?さらにロボタンの主題歌を志ん朝師匠が歌っていたって知ってた?

kuwachannkuwachann 2006/09/08 05:22 昨日は結局お餅を2個食べた。お腹にど〜んと来てちょっと反省。用心します。
何で志ん朝が?って感じだね。ボッチって名前を大切にしなきゃ。

kuwachannkuwachann 2006/09/08 07:39 加治木饅頭 http://ja.wikipedia.org/wiki/加治木饅頭

こうかこうか 2006/09/08 12:38 加治木饅頭や両棒餅。 冷えると味が1割くらいになってしまう。
 タイミングを診るのはむつかしいのだろうけど、
  ホームランバッターは、複数のタイミングでホームランを打てるんだろう、と思っています。
 私のお気に入りは、加治木饅頭は美坂屋。(HP無)
  両棒餅は、中川屋(寅さん=渥美清が食べにきたときの撮影スタッフらの写真が貼ってあった。)http://gourmet.yahoo.co.jp/0006713338/M0046010100/ - 23k

ミッキーミッキー 2006/09/09 16:35 数日間、ご無沙汰してました。東京に行っていろいろと片付けなければならない用事があったので。放射線治療や化学療法の影響から見事なペースで回復している様子が伝わってきます。ユーモアとインテリジェンス豊かなドクターが担当で本当によかったです。何でも相談できそう。その調子でこれからも頑張って。最近、全然本を読んでいないことを反省しています。(数独にハマってしまって。。。)ロシア文学にしても和訳はだめです。翻訳の質が災いして数ページで投げ出してしまいます。でもまゆみさんが読んだ英訳はレベルが高そう。今度誰の訳か教えてね。

kuwachannkuwachann 2006/09/10 03:27 私も英語の和訳は靴の上からかゆいところを掻いてる気がしてしまいます。英訳のレベルが高いというより、どうあがいても英語は第2言語なので、ちょっと変でも気にならないのかもしれません。普通のペンギンブックで、訳はRosemary Edmondsです。
この医者は、文学にある患者の描写を参考に顔や表情をみて、「お、すごく回復してるね」と言うのです。こんなに私と話をして時間大丈夫なのかしらと思うぐらい話てくれます。数独は、おもしろそうだと思って始めるのですが、最後までできた試しがありません。飛行機の中で一生懸命考え込んでるミッキーさんの姿が頭に浮かびます。

fuu~fuu~ 2006/09/10 23:24 「ベトナム麺料理のフォー」って何だろう?いろいろと食べることができるようになってきたみたいで、よかったね。

fuu~fuu~ 2006/09/10 23:26 コメント先をまちがえてしまった!

kuwachannkuwachann 2006/09/11 02:50 fuu~ちゃん、http://ja.wikipedia.org/wiki/フォー_(ベトナム料理)。すごく沢山サイトがあってビックリした。1週間に1度は食べたくなるの。