August 31, 2010 09:28 Started to use new drugs

I have started to take new drugs since yesterday.  I thought I needed to have one pill but three were needed...  As you can see from the picture, it's big!  I put on top an usual pill that you can buy at a store for ease of comparison.  The bottom is a new medicine.  It's too big so that I can feel it in the middle of the throat after gulping.

But I should not complain.  5 persons out of 100 persons have the gene fits this drug.  I won the pill with 1/2 odds.  It is effective for 70% patients.  The effect can be seen in one week at the earliest.  I hope it will work and get rid of the cancer.

August 30, 2010 18:00 Today's professor's round

I welcomed the professor's round with the mask of the picture today.  Ojiyan left two of them when Ojiyan visited me last week so I got one of the nurses to put it on.

The professor did not blink though all other doctors behind him laughed loudly.  He checked me in the mask with his amazed eyes and mentioned "you involved the nurse this time....".  It was very successful today too!

August 30, 2010 08:38 Great!

I won the pill.  It's about the new drug starting today.  Great!! Odds were 50%-50% but I finally got to the pill without any mishaps.  Wonderful!  Thank you for praying for me. I hope the new medicine works!

The nurse told me that the other patient who could not go to the restroom alone recovered by this drug to be able to go home and stay a night. I can go to the restroom alone so I look forward to how much I will recover by this medicine. 

This is said to be effective for 70% of the patients.  I hope that the drug works to me too.  And with fewer side effect...

August 28, 2010 12:34 Age of resistance.

Sorry for taking time to update the blog.

I got many tests everyday this week. I was bit tired because the contrast agent used for each CT sanning made me feel sick and to be honest, I became tired of everything. I understand everyone is worried about me but Maro-san is now very tired..
On top of constant diarrhea, yesterday, I could not stop throwing up.  I have been exhausted and cannot yet recover today.  I entered the rebellious phase and started to refuse to take medicine yesterday.  Because the number of pills is only increasing. Some of them come with stomach medicine because they are too strong to the stomach.  I strongly refused to take any medicine because it's just too much.  My stomach is crying for a break.  A bad patient, isn't it?

The doctor in charge came to see me today.  She reviewed medicine, explained about it and reduced some.  Should act like a baby sometimes!

By the way, the tube is gone. A surgery doctor came and removed it about 3 days ago.  I was making a big fuss because I was told to remove it without anesthesia. Looking back, it was ok but the tube inside me was 15 cm long and the wound was not healed ---!  He said me to hold the breath and it happened in a split second.  The tube was taken off like yeuuuuun...  Haaaa, I never want to have a tube connected to me again.

August 23, 2010 10:53 TV personalities announced to have a lung cancer

TV personalities who found to have a lung cancer at about the same time as I are Nashimoto-san, a reporter and Makino-san of Tokyo Purin.  I read their blogs and twitters every day.  From their blogs, I found that they were on the same stage as I am now.  I have been encouraged by them who were fighting against cancers but Nashimoto-san passed away...

I did not pay attention to Nashimoto-san before I got a cancer but the news of his death was really shocking to me who had a lung cancer at the same time.

But Makino-san is undergoing the second cool of the anti-cancer treatment. I'm still fine and will have the new drug from now.  Due to the advancement of medicine, the cancer is no longer the disease resulting in death. But if the anti-cancer treatment does not work, the cancer develops and could result in death.  No matter how strongly I wish to live, that's the fact.

The daughter of Cathy Nakajima who passed away last year also had a lung cancer.  It's a problem that a lung cancer is not considered if you are young even if something is on the lung X-ray.  It happened to me too.  I had something on the lung X-ray in early May.  I was diagnosed to have a lung cancer on July 14.  Naomi-san, daughter of Cathy Nakajima went to see a doctor in January because cough did not stop.  Diagnosed bronchitis.  In February, she was told to have pneumonia at a different hospital in February.  At the third hospital, she was finally diagnosed to have a lung cancer but died at the age of 29 after 5 months of struggle.

After I had the lung cancer, I read blogs of people who have lung cancers.  There are girls at the age of 23 or 24.  A person at the stage 4 is living cheerfully.

No one has the same life as the other person.  This is true even if you have a lung cancer.  Everyone who is born will die.  But one forgets it and life is taken for granted.  It's ok, I think.  People are created to forget.  No one lives thinking that s/he might die tomorrow.  It's too sad and painful to have such life.  Feeling sadness gets you nowhere.

It's a mischief if you don't enjoy the life given.  A life has its meaning only when you shine it.

Well well well, I have the Professor's round today.  Got to think about how to have a good time with them.

May the soul of Nashimoto-san rest in peace.

August 22, 2010 13:01 Under an IV

I took a medicine and was in bed this morning because of the headache. Though the brain tumor was eliminated, it is not all gone. It will become smaller over a half year after the radiation therapy. So I have this headache from time to time.

When I have a headache, I become worried that I might have got another tumor in the head.  And, oh no, I'm losing weight.  I'm seriously concerned.  My weight is 5 kg lighter than my best.  I'm not bragging.  I feel nausea - I'm so skinny.  If I lose more...  ohhhhhh, I have to stop it.

The tube that was originally scheduled to be removed in one week is still in me.  Thinking well, this tube and machine are now part of my lung.  It's amazing.

My beautiful doctor in charge came yesterday to say that this tube would be taken off on Tuesday and a new drug would be given to me from Wednesday. It's a new drug and a lottery is used to decide IV or a pill.  I don't know which one I will be given.  Pleeeeeease give me a pill.

According to the Professor, I will have to go to Boston and Seoul if I want to receive this new drug at the place other than the Okayama University.  The doctors who know that I was in the U.S. said "Boston is good, isn't it?".  How can I go to the U.S. in this physical condition where I have no medical insurance!

I happened to be in the Okayama University, to have the gene that fits this new drug and to be just ahead of using this new drug.  I really wish I could get the pill!

August 20, 2010 11:04 These days.

 One week has passed since the tube came into my lung. Every day, the lung is being washed spending about three hours. I still have muddy fluid so I need to have this tube for a little more.  By the way, I've forgotten to announce the name of the tube.  I rejected your idea of Naoto Kan* and named Blue-sky. As you can see from the picture, it's blue. That's the reason.  I don't like Naoto Kan, sorry!

Mothers of Yukuri's friends visited me the other day and gave me a T-shirt with messages. I thought the messages came from several mothers with whom we always spent time together but many people gave me messages, which greatly touched my heart.  I'm a very lucky person.  Thank you very much!

Today's menu - one blood test, 4 transfusions and the lung wash.  I will try.

* Naoto Kan is the Prime Minister of Japan. “Kan” means tube in Japanese.

August 18, 2010 11:45 Professor's Round 2

When I put on a funny costume at his first round, I asked only one of the nurses to let me know when the professor's team arrived.  All nurses knew this now.  Today many of them said to me with a smile "he is coming now" "he is coming now" a number of times.  I got excited each time when I heard the door knocked.  Oh no!!!  One time is enough!

Today, I faced the professor with the Afro hair and a tiny pair of glasses at the tip of nose. He said "Wow, here comes!"  As he seemed to like this, I answered to him "I got some hair growing again" when he asked my health condition.  My answer was sort of ignored...  I will try a red wig and to be Yayoi Kusama next time.  But the red wig is not so funny if it's only with that wig..  Mmmm..

Maro-san yesterday.

I got my lung washed with water.  At the beginning the water was bursting but it became difficult to me and the water pressure was reduced.  After the treatment I had a high fever all night.. could not eat..  it's tough.. I need to eat to have stamina but cannot..  I was swamped with sweat but cannot take a shower for the tube from the lung..  But once the lung is cleaned and inflammation is gone, the fever should be gone too and I can move to the next treatment. I have to hang in. . but I have a fever 38 centigrade (100 F) and higher continuously for a longer than one month.

August 16, 2010 19:21 Professor's round

There is the professor's round once a week.  He will come with many doctors following him.  Today, I welcomed him dressed like the photo.  Everybody giggled. So I gave a nice impression - the professor spoke more than usual.  Later on, a nurse told me that the professor should have been pleased with my welcome very much as he was nice in heart though he always gave strict messages.

I have plenty of time everyday so I too need to find some fun.  I will challenge him with the Afro hair and a tiny pair of glasses at the tip of nose.  If you have any idea or costume, send them to me. Not O.T.T. but simple ones like sticking teeth, cat ears, and a party hat.

Maro's health condition of the day. The pain of the tube is getting less than yesterday.  I can get up alone. And I was notified of the real life expectancy. It was shorter than what I expected.  But I will live.  Longer than that.

Something in me was gone after hearing that.  I will live as best I can.  That's it.  I will not cry any more.  I cannot afford crying.

Today, Yukuri came over. My beloved daughter is living at her very best.  More than I am.  I cannot give in.

August 15, 2010 20:03 One month since then.

I came to Okayama one month ago on July 15. Only one month has passed since then. I feel like it's been a year. I have gone through with ups and downs but am trying to have peaceful days. I try not to think about anything but the treatment.

That's all.  But I hope that the cancer will be smaller and I can return to the normal life soon...

Today I had an aroma massage by the therapist from Nagoya. Tara-chan arranged this before. She gives massages to cancer patients without charge! In addition, she gives massages as a volunteer at various places. She is a powerful person and gave me very good spirits. She taught Masao-san how to massage and gave the oil. Masao-san will give me massages from now on. Thank you, Tara-chan!!

August 14, 2010 17:43 A tube sticking out of my lung.

I'm relieved that a tube was safely got through from the lung. Now I can see it sticking out of the side and fluid dripping to the machine next to me.  I don't like this clear tube because I can see slightly bloodish fluid..  I can also see how much it is gathered.

Actually, the operation was scheduled yesterday. But after the blood test, the doctor suggested to use an IV with coagulant and they started preparing for it. All those preparations took time and they found out it would be at around 20:00 when the IV finishes.  After that, another blood test would be necessary, pushing the operation to 22:00 by that time the hospital would have been short on staff, it's risky to have the operation at that late time, so it was canceled.  I had a mixture feeling because I had been waiting to be called for the operation all day yesterday with my heart pumping hard!  Give my stable heart beats back!  Anyway, I went to sleep after getting vitamin IV which should give the same effects as the coagulant.

The next day, or today, the blood test turned out ok for a tube.  I had explanations at 10:30 in the morning and was taken to the operation room. I was told that the tube would go to the chest through the rib. To relax, music was allowed so I brought the player and have it placed on the bed near my head. Of course I brought Shakira and I sang to the music trying to put off my attention from the operation.  The doctor used the electrosurgical knife, taking into consideration a risk of non-stop bleeding. I can hear the noise cutting the skin and smell the burning... it was really good that I was with the music I love.  The doctors and staff were all nice. They said "we gave you additional anesthetic as a service" and all the time in a friendly atmosphere.  Nevertheless, it was painful and I was very nervous. I cried with a relief when I called Mom after the operation.  It hurts when I move, the pain will last 2 to 3 days. I cannot even wake up alone. It continues to be difficult until I get used to it.  I will carry this tube for a week or so. Once again I have an attendant. Well, what name I should choose for my new partner.

August 13, 2010 09:41 Washing the Lungs (another report follows)

The doctor had told me that the high fever that comes every day was probably the effect of the fluids in my lungs and they took some fluids from my lungs yesterday and if the fluids were due to cancer, the cancer would have spread more. Yesterday the doctor took a brief look with the microscopes and there were only bacteria.  No detailed results have arrived yet.
I get nervous at every tests.  I'm fighting hard, but fear how many times I will be let down.  How many times do I have to get up from the very bottom?  What did I do to deserve this?
It's not decided yet, but they might put a tube in my lungs and take the fluid out and wash out the lungs where the fluids had been.  I'm taking blood thinners now so my blood is thin = no blood clotting = blood won't stop bleeding, so they have to have a surgeon take care of it.
I was so scared of the needle through my back, and the thought of tubes in my lungs..I'd faint at even the thought of it.
But if I get this treatment, I won't have the high fever so I'll do it.  Today my mom was planning to bring Yukuri along but since this operation was scheduled it was put on hold...Yuku-chan mommy will keep up the fight
(The photo was taken with Yukuri's friend's mother)
P.S.:  The doctor from the surgery department came and it was decided to put the tube in today.  And only local anesthetic will be used.  Someone who had an operation, tell me how to relax

August 12, 2010 19:50 Fluids in the Lungs

Today the results of the CT scan with contrasting agents showed that there were a lot of fluids which were pushing against　the heart; the doctors wanted to know whether the fluids had come from bacterial infections or from cancer, so they had put needles through my back to take samples of the fluid.
They put some anesthesia and had me wear a paper shirt with holes for the needle and it was a bit like a real operation, so it made me really nervous
Though the anesthesia hurt a bit, the rest was fine.  The fluids were for testing, so they only took about 100cc.
Later on, while trying to get some rest lying down, I had a really really realistic dream where there was a big mirror and washbasin next to my bed and while I was sleeping at night, I felt somebody was in the room and looked at the mirror and the washbasin and there was a woman in a white kimono with long hair combing her hair and she noticed me and looked back at me suddenly and came right close to my face and I was so so scared that I had my eyes tight shut and she was saying something in a small voice, and I was so scared that I was trying to say help help help help and then I woke up.....I thought my heart would stop because I was so scared...I'll definitely sleep with my lights on tonight.

August 11, 2010 08:32 Feels Good!

Hey, I got my head shaven!

Whew, it feels good.  Now I don't have to worry about all the falling hairs!

I think I look better than when I was 20 and had my head shaven.  Masao-san said I looked good and I'm not bragging but the shape of my head is pretty...

And one more thing, the IV line and oxygen tube that I had ever since I was hospitalized here were finally removed.
I'm happy I'm not tied up anymore!
When I had it was a bit of a hassle to go even to the toilet and was a minor bugger I have to get anti-biotics 3 times a day for half an hour everytime, but that's okay.
Yesterday Masao-san brought me broiled salted "ayu" It's my favorite fish and the salted broil is one of my favorites.  The first ayu this year was delicious! If I have the salted ayu, I don't need any other food....I dream of having wild ayu on a stick and pig-out on it.
The treatment plan is to take a CT scan with contrast agents and see whether the blood clot has disappeared and whether the anti-cancer drug are working and judge whether to use the same anti-cancer drugs or use the new drug.  However, to use the new drug the drug company apparently requires 28 days to lapse since the last day of anti-cancer drug use and the doctors are now negotiating whether such rule can be relaxed.
In general it seems that anti-cancer drugs only work on 40% of cancer and even if effective the cancer will only reduce to about half its size, but the new drug is expected to work on 80% and the size should be significantly smaller; it's also a pill, so there's no need for hospitalization.
Of course, there's the potential for a host of side effects, but I'm expecting great things from it.
P.S. Thank you for many comments to yesterday's diary.  It made me cry a lot.  Maro will live to the max!

August 8, 2010 20:59 Confession

The exact name of my cancer is adenocarcinoma.
There are several types of lung cancer and I have both small cell cancer and non-small cell cancer. And there are stages to cancer. Stage 1 and Stage 2 are levels at which excision is possible through surgery.  Stage 3 is inoperable but no metastasis is seen. Stage 4 is also inoperable and metastasis is seen to the brain and bones. There are more detailed levels but these are the 4 big categories.
My lung cancer is at Stage 4.
Stage 4 is also known as terminal cancer.
So that's why the nurse at Nihon University was crying.
According to the textbooks, patients with Stage 4 cancer have an estimated life of 1 year.  The 5 year survival rate is equal to or lower than 5%.
But I think terminal means that there are no ways to treat it. I just began my treatments.  My brain tumor was defeated.  We found a drug that should be effective for me.  I can't give up hope of living.  There are many people who outlive their prognosis of an estimated life.
Cancer is an opportunity that god gave to me.  I will live the life that I have been given as a second chance for life and cherish and value it.
Your prayers are being answered today too.  My body didn't ache and I was able to eat the meals fine.
Thank You.

August 7, 2010 13:23 I want to have a skinhead

My hair has started to fall due to the anti-cancer drugs.  In the beginning it was funny and I'd pull out a bunch of hair and cry out "Oh me god, whatta big bunch" and put it in the trash bin, but the hair sticks around the pillows and if I take a shower it falls out and sticks around on my body, and it's just a pain, so I asked the doctor of the relief care team whether it's okay to shave my head.
It's better to be bald than have some hair
It's summer time, so it's good
And I don't have much hesitation to be bald; in fact when I was 20, I did it in the summer. Back then I thought I wanted to have a skinhead just once during my lifetime and if I became an adult, I wouldn't be able to do it...so the time is now, if not ever, so I did it
But if I knew that I'd become bald again, I wouldn't have done it....so it's my second time in my lifetime to be bald
My white blood cell count is low now and I can't risk an infection from the head, so I got permission if my white blood cell count went up next week
Yeah!
So don't be surprised if you visit me and I have a skinhead

August 6, 2010 18:53 Great Report

The gene test results arrived today. It was positive; means that there's a drug that suits me. It seems that only 5 out of 100 people has this gene and I was one of them. It's still in the testing phase, and Okayama University is the only hospital in this Chugoku area to be doing the testing; I'm really glad I came here. If the anti-cancer drugs I'm using now are effective I'll continue using them and they'll do more tests to decide the course of action; there's slightly more hope now
Tears fill my eyes.

August 6, 2010 16:09 About Okayama University Hospital

The photo is the view from my hospital room.  It's so good that I was hospitalized at this time of the year.  I can see the clear blue skies every day. The hospital I'm at, Okayama University Hospital, is so brand new and has all the features that all the visitors are surprised by it.  There's Starbucks, Lawson a convenience store, and a deli-like marche where you can buy almost anything.  There's a heliport on the roof for emergency patients.
I'm in the respiratory department and there are many cancer patients.  I thought that being a nurse here would be hard, but the nurses here are always smiling and caring and are here at a moment's notice.
And I have two doctors responsible for my care. One is a male and the other is beautiful young female doctor.  I trust them very much. The male doctor apparently is a specialist in oncology.  He exudes confidence and I feel everything will be fine by him. Other specialists in respiratory systems and gynecology see me as necessary.
And Tara-chan requested for me that a relief care team be assigned to me.  They take care of my worries and physical pain and take care of everything I can think of.
This hospital was close to my home and it was sort of a just a choice I made, but I'm now very glad that I met these wonderful doctors.
Looking at the blue skies everyday spending the time slowly, I'm thankful that I'm alive.

August 5, 2010 16:31 Today's Diary

Today, my white blood cell count dropped a lot and the doctor ordered not to eat fresh vegetables and fruit. It's the side effect of anti-cancer drugs and the count yesterday was 2500 but today it was suddenly 650.

I have to be careful of infectious diseases now and have to decline visitors in big groups...

High fever again...

If this stays the anti-cancer drugs can't be used, so they gave me drugs to boost my white blood cell count.

I'm getting bored of sleeping...

But if I get up I feel dizzy.
Moja went back yesterday and Mom came today.
Masao-san went back to Tokyo and is taking care of a lot of things.

The sky is clear blue from the hospital window.

Information on Ookubo-san (same as Okubo-san)
The person in charge of me today seemed to be Ookubo-san and she came to the room many times this morning.  I spoke to her a bit and she may be a good person.  Good with needles too.

I had the morning blood test and also had to change the IV needles and got the white blood cell shots, so I had 3 needles today and it didn't hurt as much.  Thanks for her experience.

If I could I would name Ookubo-san for my shots.

August 1, 2010 11:55 Feels Better Today

The doctor said that yesterday's anti-cancer drug should work and I should feel better today, and I really feel better. Have a slight fever now, but much much better than a high fever.
Oh, yeah, I moved to a private room. Opened the small window to let the air in now. It's on the eighth floor and the wind feels great
Today the noisy visitors from Tokyo will visit again
August 3, 2010 16:21 Today's Diary
The high fever that comes every morning continues today; the drug was changed to the better one, so it's weird. 38C (100F) this morning too and sweat a lot. Can sleep well at night without the high fever. So I take the anti-fever drug and lie down during the morning.
Had a good appetite for lunch and could eat well. Simply cooked foods are tastier now. Like baked potatoes, and corn. Just a bit of seasoning and the flavors stand out.
In the afternoon Mojalinu visited me all the way from Tokyo. The fever dropped by then and I felt good and let it go by slowly.
Yesterday's X-ray showed that the cancer growth had stopped
Your prayers are being answered!!!
Thank you.