Day 2: after my 2nd cycle

Day 1: (for a record)

[physically] I could move around, but by the afternoon, I took a nap.  I felt some mild nauseous and I took medicine in the morning for that.  I took anti-anxiety and anti-nausea pill before I went to bed.  I can still taste food.  Some appetite, but not my usual level.  My feet swollen.

I did not do it intentionally, but I took my steroid medication only half the amount I had to take.  I did not realize I needed to take 2 tablets.  A nurse told me “you cannot do that, medicines are there for reasons.”  I totally agree with her.  I did not forget to take them.  I remembered to take them on schedule.  I just did not realize that I was taking only half of it at each time.  There was a remedy, fortunately, and at the chemotherapy, they injected me with an extra steroid to compensate.  The major reason to take the steroid sounded by the nurse was that to prevent permanent feet swollen which can happen to me.  So, I was afraid.  I remembered wearing a pair of special socks for preventing the swelling.  I looked for them and I found them!  I have been wearing them since then.

[emotionally] I know what to expect.  I dropped the idea of “I have to do,” rather, I do what I can.  Stable.

 

Day 2: after my 2nd cycle

[physically] My neck sours.  My side of left breast reconstruction somehow feel pain when I push softly.  I could move around.  My nauseous is more severe.  I took a medicine in the morning to prevent that.  Most of the day, I was in bed reading or taking a nap.  I guess, I taste food OK.  Some appetite, I eat, because I should.

[emotionally] Stable.  I try to take things easy.  I notice a lot of things to do, but try to ignore them.  Some visitors at door, and I realized I should have a scarf or something handy to put it on before answering the door.  Too tired to explain what is going on all the time.

Read More

Pertuzumab – Perjeta-, a new medicine, finally for me!

A great news for me!!!

My insurance company approved me to have a new targeted therapy called Pertuzumab, or a brand name called Perjeta!

Now my chemotherapy treatment is :

TCH+Perjeta : docetaxel, carboplatin, and trastuzumab (Herceptin) and Pertuzumab (Perjeta) for HER2/neu positive tumors

The last chemotherapy, I checked in at 11:45 AM and I was discharged at 6:45 pm… exhaustive.

 

Pertuzmab, US FDA approved the medicine only 2 years ago, 2012.  It comes in IV injection at a time of chemotherapy.  They call it targeted therapy rather than chemotherapy.  Pertuzumab targets my HER2 breast cancer cells.  Her2 is a protein and it can grow excessively around a cancer cell.  The cancer cell grow quickly with the Her2.  about 15-20% of newly diagnosed breast cancer patients have HER2 positive.  HER2 is more aggressive cancer than hormone based cancer.  It ranks aggressiveness and mine is the most aggressive kind, HER2 +++.

Other targeted therapy for Her 2 is Trastuzumab (or Herceptin).  That was approved by the US FDA about 10 years ago for only advanced breast cancer patients and from 5 years ago, it was approved to use for early stage breast cancer patients.  

Trastuzumab and Pertuzumab target HER2 but a slightly different way.  From medical researches, they found better prognosis and better recurrence rate if patients receive both of them, rather than only Trasuzumab.

When I saw my oncologist for the first time, she mentioned of using Pertuzumab.  I have read about it, but no other specialists had mentioned it before.  Since side effects of Pertuzumab and Trastzumab are almost overlapping each other, adding Pertuzumab should not cause me extra stress.

Day I called to make my 1st chemotherapy appointment, the doctor told me that she could not put Pertuzumab for me.  My tumor was smaller to qualify for it.  That was disappointing.  When it is not qualified, insurance companies may not cover the drug and it would cost us quite amount of money.

Over 3 days, I thought of it a lot.  I started to look for information of the criteria.  I went to see FDA website and pharmaceutical company’s information.  I stayed up late to do the research.  It sounded I was at a border whether to be able to receive it or not.  mmm.  I was not satisfied, something was not that clear to me.

I contacted my doctor’s office and asked for more information about it.  Later, according to my doctor’s nurse, the doctor spent some time to write a letter to the insurance company for possible approval with my condition.  We had to wait for the insurance company’s response, which could take 2-3 weeks.  Meanwhile, my 1st chemotherapy had started.  I thought the new target therapy Pertuzumab had to be done at the day 1 as well.  But I learned it could wait and I could start from later chemotherapy.  Good, I hoped for a good answer from the insurance company.

This past Monday, I saw my doctor and she told me that the insurance company approved the medicine and I will be treated with Pertuzumab!  Thank you so much!!!!  I would like to choose to have a better outcome after going through this.

From the 2nd chemotherapy, 2 days ago, I now have the Pertuzumab as well.  Let’s hope for the best! Read More

Bald is my new style

After I came home from the chemotherapy, from my previous experience, I knew I may have 2 days that I can move around.  Before sinking my body into my bed and rubbing my head against my pillow for a long time, I decided to take my situation under MY control.  Instead of my falling hair to control my emotion.  I was determined.

My forehead hairline was moving backward.  It was not true, if I say that was fine.  It harts to see it’s thinning.

14872390887_f7e443c955_k14872276320_77d4a62fa4_z

Courtesy of my husband for making me bald and courtesy of my son for documenting this moments, I became bald.  Thank you guys!  Some of the photos are out of focus, but great job, my son!   It definitely captured the moments.  Here are some of the documented photos, if you are ready.

 

15042095996_87d4c3d2f0_z

15064731435_38954b79da_z14878103529_56a2045845_z

14878252318_acbf1d4f16_z

14878140089_6a526dc52f_z

14878316017_26c6dd00d0_z

14878185469_dd297f2d4b_z

15061885311_0fb731343f_z 14878461367_82aeea6bb8_z

14872807707_45c55cfc11_z

14878400040_402fc5f734_z

15065057385_af02840614_z

14878374299_1bee9df702_z

So, there you go, the bald is my new style for now!

14872964090_2a8b734978_z

Maybe because I was at the chemo unit today at the hospital, somehow, when ever I see bald style women, I cannot help but to associate my bald image to cancer and nothing else.  I am sure there are women out there being bald because they choose to do what ever the reasons are.

Yes, it is emotionally not easy.  In the pictures, I can see I was afraid at the beginning.   Well, the machine makes a lot of noise and I was not familiar with it’s buzzing right next to my ears.  As time goes by, I look more comfortable.  Putting this blog was not easy for me to review, but it should be well documented.  I choose to be bald, it is under my control!  I like that attitude!

With this new bald style, it will be completely new experience to me.  Many women with breast cancer go through this.  I am hoping to deliver some messages that your appearance may have to change unwillingly due to cancer, but you can heal it physically and emotionally well with some help of fashion and attitude.  Yes, there are moments that cancer haunts you, it has been happening to me, too.  I am sure there will be days that I feel so depressed, well, in fact, I had panic attacks and was seeing a psychotherapist .  But I would like to bring things together somehow so that I can get back to the woman I used to be, or even with more strength!  I love you all, thank you for reading my blog.

Read More

I will be checking in for 2nd chemo cycle today

I will be checking myself in for the 2nd cycle of the chemotherapy today.  My hair is falling a lot.  I will be updating when I can.

I am not looking forward to it, but I got to do :-(.

I have been drinking a lot of liquid especially from yesterday.  It supposed to be good for me to get rid of excess chemicals from my body.

15035348156_baaa35c530_k

本日、抗がん剤治療、2サイクル目を打ちに 出かけます。髪の毛の抜け方が半端なくなってきましたが、まだ何とかこのままで出かけられます。出来るときに アップデートします。

いやだなー と 思っているので、持って行く荷物を整えてないですが、いかなくっちゃ。という時間になったので やっとエンジンがかかりそうです。

昨日から、特に気をつけて たくさん水分を心がけて取るようにしています。腎臓や膀胱にケミカルをためないようにとのことです。また しんどい日が続きそうだ。ふーーー。行ってきます。

Day 19: Vegetarian Restaurant GOBO in NYC

2nd day of teaching for my the other Fashion Economics course today.  I teach the same subject Mondays and Tuesdays, 2 sections with two different groups of students.  (Japanese Translation is later 日本語は英語の後に記述あり。)

I don’t know how other professors are, but when I go to a class room on day 1, I get anxious to find out how I do with a new group of students.  Each group can be really different.  I started to notice my heart beat goes faster than usual.  That made me wonder, if I was doing OK.  (and I was OK.)

One of a side effects of my chemo treatment that is explained to me was I might have some heart problems.  I did not ask exactly what or how it was.  Because there were so many side effects that I did not have a capacity to comprehend all details of how each side effects potentially do to me exactly.  Just understanding the list of possible side effects.  A baseline of my heart condition test has done before my first chemotherapy.  I will do the test regular to make sure I don’t develop anything serious.

Knowing that I may have a heart problem, faster heart beating makes me worried if I am doing OK.  This time, I knew the reason of my fast beat and I was hoping that it was a separate incident from the side effects.  It happens many times especially on the first day of teaching.  Nothing serious happened, no worries.

A visit to a vegetarian restaurant; GOBO in NYC  (http://www.goborestaurant.com/west/index.htm)

After the teaching, I got together with a good friend of mine.  She introduced me to this vegetarian restaurant.  She knew I wanted to catch up with vitamins and minerals with vegetables and fruits.  A vegetarian restaurant!? sure why not.  I have never be interested in going to a vegetarian restaurant myself.  But if is for the first time, during chemotherapy sessions will be an ideal time to dine.  WOW, it opened my eyes!  What a great surprise I had.  “If that is for everyday, I can become a vegetarian!”

Clean, sleek, modern, but warm and cozy inertia decorations.  Presentations of meals look very attractive.  AND of cause, the taste and WOW, the texture of vegetables, bravo.  The menu had mixture of Asian and Italian.  Gobo, the name of the restaurant, comes from a root vegetable called gobo in Japanese, but the food was not Japanese.

Soy bean paste pate’s texture was just like chicken nuggets.  King Oyster Mushroom had light cuts on surface and it’s texture was just like squid.  Seitan -wheat gulten, seemingly a good source of protein- was like a piece of beef.  So interesting!  I was really content of what we had.  She told me that there are other restaurants like this in the city.  Interesting.  No reason to avoid vegetarian restaurants any more, I am sure some of them are so satisfying for non-vegetarians, too.

Vietnamese spring roll: Home pressed ginger ail with pomogranate

14863124737_ca5c7057a1_z

Soybean with brown rice

15026688366_a5cc978613_z

King Oyster Mushroom with vegitables14863129057_e562fb4b90_z

14863026030_12daf2f7b2_z

Seitan, Kale and coconuts rice14863087468_b085b47200_z

Passion fruit creme brulee and chocolate cake

14862961269_fa5ddd960b_z

Read More

Day 18: Teaching went really well

Day 18 after my 1st chemotherapy. (Japanese translation is at the end. 日本語での記入は英語の後にあります。)

School has started and it was my first day of teaching for the semester.  I had full energy today.  Each class lasts less than 3 hours with a break in between.  I started out as usual routine, introduction of the course.  When I introduced my syllabus which include schedule for the semester, I made an announcement of my health condition to my students.  I did my best to be honest about what is expected every three weeks after my chemo cycles.  I explained what I experienced from the first cycle.  There are some days that I won’t be as energetic as I am today.  I appreciate my students reaction that they all looked sincere to me.  I am thankful for that.  I am excited to be able to teach the subject!

First day of teaching:

15020552506_3ee5efac54_z

Be active, when I can!

Read More

Heal in Sneakers

It was my last day of summer 2014 with my son.  Technically, for my son, his school does not start until after the Labor Day.  But for me, my teaching is starting from Monday and Tuesday.  Wednesday, I will have another cycle of chemotherapy.  Then the rest of the week, I know I will be in bed for sure.  Today was my last day of summer 2014.  (Japanese translation at the end. 日本語は英語の後にあります。)

15003665056_179b7e19e6_z14840002850_c4c066c681_z

Heal in sneakers: We decided to go for a hiking to refresh my first chemo weeks before the next cycle.  My physical strength is back to normal.  Nobody can really tell that I am under the chemotherapy.  Full energy.  We were talking each other a lot on trails, we made jokes, found frogs, lost our way a little bit, and talked about where to have some ice cream after the walk.  What a wonderful family time, I had!  I did what I wanted to do before the next cycle.

 

15022974131_e279282739_z

On the top of the hiking trail with great view!

 

14839423558_3331572040_z

[physically]  Day 18. Every morning these last 2 days, as I wake up, I look at my pillow.  WOW, so many pieces of hair.  This morning, I probably picked up about 50 pieces.  No nausea at all.  My taste buds are fully recovered, food taste as they supposed to.  My left arm, I still have some pulling sensation from here to there.  The movement is not completely back to me.  Back to normal completely otherwise.  My scars look great (a strange word to express scars, but honestly as scars, they healed great).

[emotionally]  I knew about my hair to fall, I was emotionally prepared, almost.  One of the first things I thought after discovering my breast cancer was loosing my hair, and most of the doctors I came across did not forget to mention about it.  I still had a really long black with a little high-light straight hair style back them.  I was prepared for it.  Not sad, it is rather strange and someway, interesting.

I am really thankful to my friends and my son’s friends for arranging a lot of play dates over this summer.  I feel big relief to see my son is having such fun and special summer while we are staying here all the time.  We had a family house guests last 2 nights, our friends that I had not seen since 4 years ago.  She did not want to bother me for sleep over, but I insisted them to stay.  They live far away and I don’t have much chance to see or talk to her often.  So many things to catch up.  Kids set up a tent in our yard and constant laughter.  I had a lot to catch up with my close friend.  Tonight my son is having another sleep over at friend’s home.

本日 私と息子の最後の夏休みの日。息子の学校は9月にならないと始まらないけれど、私の授業は明日から。月曜日 火曜日と教える。水曜日は、抗がん剤治療2回目。木曜日以降は、ベッドに沈み込んでいると思われる一週間。今日が 2014年最後の夏休みの日。

今日は、体調もいつもの私のエネルギーに ほぼ戻っているので、ハイキングに出かける。次の抗がん剤のためにも、自然のエネルギーをいっぱいもらって、第一回目の抗がん剤後の副作用で寝ていた分を少しでも取り戻したい。ほぼ通常どおりなので、たぶん私が抗がん剤治療中だとは、いわなければ分からない。ハイキングの道々、家族での会話が盛り上がる盛り上がる。冗談を言い合ったり、かえるを見つけて名前をつけたり、道に迷ったりしてあせったり、帰りのアイスクリームはどこで買おうかと話したり。素敵な家族時間となる。最後の夏休みの日に ふさわしい一日に。もう、遣り残したことはないから、次の抗がん剤治療、受けてやろうじゃないか。

[体調] 第一回抗がん剤終了後 18日目。ここ2日は、起きるたびに 枕を見ずにはいられない。今日は50本ばかり枕についている。気持ち悪さは かすかにあるかな~?ぐらいでほぼなし。食べ物も 記憶している味わいがする。左腕は、まだ 動かすと あっちこっち引っ張り感がある。無感覚の部分は、神経が切れていて無感覚のまま。全摘出後の傷口が、傷口の割りにとっても綺麗にくっついていている。

[心理] 髪の毛が抜けると言うのは、乳がんになったと宣言を受けて 一番最初によぎったことのひとつ。その上、会う先生会う先生が、全員口をそろえて、残念そうに 髪の毛が抜けますよと 忠告をしてくれていた。当時は、ストレートのハイライトを内側に入れているロングヘアーだったから、よっぽど髪の毛を伸ばしてきたと言うのが どの先生も見たとたんに思ったんだろう。きっと私の心の準備は出来ているはず。髪の毛を見ても、とうとう来たか このときが、と思う。抗がん剤の効き目の恐ろしさと同時に、興味深いと思う。悲しくはない。

私の友達、息子の友達にいつも感謝している。この夏中、ことあるごとに、一緒に遊んでくれている。この2泊、4年ぶりに会う私の大切なお友達が泊まっていってくれた。遠慮して、日帰りと言っていたけれど、はるばる遠く来ているし、私のこの経験したことや彼女の経験したことを語り合うのに、日帰りでは到底無理。体調も良かったから、ぜひにと泊まってもらった。息子達が仲良くて、ずーっと笑いが絶えなかったし、昨晩は、庭にテントを張って、2人だけで冒険冒険と庭で寝ていた。二人とも寝不足に違いない。今晩も、息子はお友達の家に泊まらせてもらって、息子が楽しみに出かけていった。友達の家でのお泊りは、この夏2回目です。息子が楽しい時間を過ごしていると分かると、私も安心して 思う存分治療をがんばろうと思う。息子の夏休みは、友達と濃密な時間を過ごして、私たちが家にいながらも経験値をたくさん積んでいる。ありがとう。

Good Nutrition, When I Can

Balanced meals with lean protein and a lot of varieties of veggies and fruits are the good approach even during chemotherapy.  Many breast cancer patients gain weight because patients become less active during chemotherapy, while they eat the same amount of calories as they used to have.  Or it is also being said that patient’s friends and families bring over food to help her out.  (Japanese translation is at the bottom. 日本語は英語の後に記入してあります。)

My tonight dinner was perfect for me, an ideal one and it is food that I grew up with (almost).  Thanks to my parents who set some of them aside in freezer in advance.  For some of these, all I had to was to defrost or heat up.

1. black bean rice (whole grain)

2. Tofu with Myoga (Japanese herb)

3. Eggplant from today’s farmers market with Bonita fish flakes

4. Hijiki (seaweed) with Fried Tofu

5. Burdock with Sesame

6. Zucchini Pickles with Kombu Seaweed

7. Chicken Lever (for a source of iron)

8. Salted Salmon with Shiso Herb

9. Miso Soup with Wakame (another kind of seaweeds) and Radish

10. Fresh Corn from Farmers Market

I know that was ideal meal during chemotherapy for me – I mean with the quality of nutrition- it did not have to be Japanese meal.  However, most of the time, I could not prepare or have meals in this way.  During 3 weeks of in-between chemo cycles, for about 2 weeks, either feeling sick to cook, or having completely no appetite and what ever served, I ate as I could.  Food became low on my priority list.

On top of this meal, today, I received a surprise delivery.  More great nutrition source came in just in time before the next cycle, which I cannot eat much at all for another 1 week.  A beautiful bouquet of fruits from my relative lives at a distance (so many thanks!).  Just looking at this gave me some positive energy.  It was so fresh and sweet.  This is the very short period that I want to catch up with my vitamins and minerals for healing from chemo and especially for my pimples, and for preparing for the next chemo.  It was a perfect timing for me.  I was feeling good enough to enjoy eating.

15011049635_8329aed40f_z

[physically] great. Minor nausea, very minor.  I was very active, before my next cycle.  Farmers market in the morning.  I took my son and his friend to fishing in the afternoon.  They setup a tent in the backyard for a sleep over in the tent.  I was thrilled to see my son having so much fun and enjoying a little piece of summer 2014.

[emotionally] Feeling great.  As next Wednesday seems to me right there, I felt like no time to waste…

Read More

Day 16: Oh, oh. My hair…

Day 15 after my first chemotherapy -yesterday night-…  At night, I just noticed something a little bit unusual.  Many hair in my underwear, and on toilet paper.  Oh, oh.  did it finally start? (Japanese translation is at the bottom. 日本語は英語の後に記入してあります。)

Day 16 after my first chemotherapy -Today-… Now as I run my fingers through my hair, two to three pieces of hair come out.  It is surprisingly no physical sensation what so ever when hair comes off.  I don’t even notice them.  When I wash my hair, I close my eyes, I cannot tell how much is coming off.  I just don’t feel a pull at all.

My experienced nurse at oncology office told me my hair would fall off after my 2nd chemotherapy.  I figured my first week of teaching, I could show up with my hair, at least once.  Oh, oh… that will be 4 days from now.  I really hope my hair will be intact until then.  I can shave it off or what ever after that.  Please stay on!

I took a shower tonight.  I washed it as if I am washing something so fragile. I did not towel dry my hair, nor combed my hair.  Please stay on.

[physically] Feeling totally normal.  Very very mild nausea.  I do what I can while I can move around before Wednesday, the next chemotherapy.  My period is still spotty.  Hair started to fall down.  I experimented by pulling out my hair in my leg, it harts, and it did not come off 🙂 !

[emotionally]  I beg my hair to stay on for another 5 days until my Tuesday teaching will be over.  Then I will surrender completely.  I just became anxious about this.  I know it was totally expected, and I think I am ready for this.

Read More

Breast Cancer in Summer 2014 with a Kid

For the last 3 days, I was doing fine.  Not great, but just fine.  Nausea had it’s peek on 2nd to5th days after the chemotherapy.  Today, not much.  Occasionally, there was some moments I was thinking, “oh, I can feel it.”  It is extremely mild today.

Once as I feel recovered, almost!, from the last one, now I can see my next chemotherapy 2/6, second one out of 6, coming up on Wednesday, August 27.  Now I know how I will respond to it, I started to prepare for it, mainly 2 things I have to do before next Wednesday.  1: prepare for my fall semester teaching material.  2: Give my son some summer treat.

Being a breast cancer patient while kids are still young, it is difficult to find a good balance.  Here I need to focus on me, while it is recommended to maintain a kid’s life as “normal” as possible.  How do I do that?

1. Keeping up with daily routine schedule for a kid (my son 8 years old)

I could not do it alone!  If you are the one who manage, kid’s scheduling, it is a good time to give the schedule to husband/partner/sitter ahead of time.  Assure him/her to trying to keep it up with the daily routine as scheduled.  Well, I still do participate, because I care about it a lot.   But there were times, when I devoted myself studying about my disease and treatments.  I also had to look for professionals whom I can trust.  I needed to discuss or just talk with my family and friends over coffee or the phone for hours (in total) to search for different opinions or just for comforting me.  I need to rest and recover.  It has been so helpful when friends take my son out for a play date.  Meanwhile, I can focus on me, not being a mother.  No worries about snack or screen time.

Keeping up with daily routine schedule for a kid can provides him/her a good security feeling.  His mother might be fighting with cancer, but his life does not change, the same as before.  The same old time.  Kids can be also scared when their mother face possibly deadly disease.  Mother’s appearance may change, not being able to move around, or hair loss.

2. Planning play dates with his friends

It looks to me he enjoys a lot to be with friends.  Seemingly worrisome issues are discussed over the phone with specialists, insurance companies, and friends at home, when he has somebody accompany with him, his focus is on the play date.  I made a lot of play dates during this summer.  I could not really go for swimming while my son loves swimming, some friends took him for a pool.  Those play dates have been helpful.

3. Unfortunate summer 2014.  Mini trips, instead, when I can.

We were initially planning to visit his grand parents in Japan for 6 weeks.  We had a plan to sending him to a Japanese public school for 3 weeks.  Unfortunately, I needed to cancel the trip.  Instead, I had to face the cancer.  I know that it is purely a social pressure, but when I hear other families go for VACATION, I felt sorry for my son.  All 9 weeks of summer break, we are in town, wait, almost.  I had my left mastectomy 4 days before my son’s summer started.  We just had to stay around.

I wanted to take him out for some trips.  When I felt good, I tried to take him out for mini trips.  Some highlights are: We visited our friend’s home in beach, a day trip.  We took him out for a theme park. I took him out yesterday for an off-broadway, “iLuminate Artist of Light”.  (So much fun, I really recommend it.  Visually so appealing.  http://iluminate.com/artist-of-light/ ) Maybe this weekend, we will take him out for a hiking (before my next chemo and it is our last summer weekend).  We enjoyed a lot.  I just really wanted to provide him some summertime feeling.

At least, it had been so helpful that my parents from Japan were here to help us out for about 6 weeks.  That was fun for my son.  Thank you, my parents!

[physically]  For the last 3 days, nausea had been almost unnoticeable.  It is there though. Well… once I thought my period was over, it has still going on, very very light.  It has been over 2 weeks.  Pimples are there on my face.  I gained back weight as my appetite is back.  My left underarm has been numb since the surgery and it bugs me.  I keep touching there lightly, hoping my nerve to come back some sensation.

[emotionally] Sort of steady… I now started to feel annoyed that my next chemotherapy is right around the corner… Next Wednesday.  My teaching is coming up next Monday, I am getting ready for it!

Read More