July, 2014

Three More Surprises

One month after the latest CT confirmed the 3rd recurrence of cancer, finally I started the 8th regimen adding Taxol this Monday.

The peripheral neuropathy has worsened even after I quit Taxol for the last two years, and  now it has been even interrupting my sleep by causing cramps, spasms, burning, and numbness  since last June, when I  held off Goshajinkigan (a Chinese herb medicine) due to a concern of the side effects on the liver.

I chose Taxol again, hoping it will shrink cancer once more, but my peripheral neuropathy is already pretty serious.   After I passed the liver biopsy,  I have been preoccupied with it.

Taking many tablets of supplements which are said good for peripheral neuropathy according to my research, I did my best to protect myself from the side effects of Taxol.  Yet, the cramps and spasms happened mercilessly over and over the night before the chemo, and even being in the chemo chair. I felt the sensation of cramping and was afraid of it tormenting me anytime.

As the five hour chemo was done, not only my legs but the whole body was so heavy that I barely walked down the stairs.

At night, however, something unexpected happened.  There were almost neither cramps nor spasms, and the next day, I felt my legs were so light that I could even run as if I had never had troubles with my legs!

What in the world happened?

I had a steroid with chemo.  Maybe it helped the neuropathy.

I couldn’t believe myself who felt better than being before the chemo!

Then at night an email came from the GI doctor regarding the varices.

“Since the liver biopsy was negative for cirrhosis, …the varices are either an over-call or …the cause is unknown. ….I think that the varices are unlikely to cause any problems to you over the long term. ”

Yay! Though I passed the biopsy, I was still wondering what to do with the varices. Yet this concern is cleared out, too!

I heard about the Sudanese Christian woman, who sentenced the death and 100 flogs penalty was rescued, too.

I give all credits to prayers.  How powerful the prayers are, and for our Heavenly Father, nothing is impossible!

I am so grateful.

 

Questions For A Neurologist

The miraculous relief from the peripheral neuropathy lasted only for a short time, and tingling, numbness, and burning sensations have come back. Because this is just the beginning of the treatment with Taxol and I’d like to be on this med at least 6 months, I visited a neurologist and asked many questions.

Q1: Are there ways to prevent or cure peripheral neuropathy?

A: The prevention or cure is very difficult.  What we can do mostly is to reduce the pain and discomfort.

( It is so disappointing and I don’t want to believe it. ;-( )

Q2.  After the first infusion, surprisingly the troubles in the legs almost disappeared.  Is it because of the steroid?

A:  It could be.  But if you use the steroid for a long time, it may cause diabetes.

( Oh yes.  Two years ago I stopped the steroid because my sugar lever elevated. )

Q3. I found out there are breast cancer patients who use vitamin B6 shots the day before chemo and on the day of chemo.  What do you think about the shot?

A: Too little vitamin B6 is a problem but too much vitamin B6 could worsen peripheral neuropathy, too, though vitamin B12 is fine.

(Wow!  I was trying to take many pills of Vitamin B6!)

Q4.I read some articles that supported high doses (21mg) of Melatonin (a medicine for insomnia)prevented peripheral neuropathy. How about this?

A: 21mg is too much.  Take 3mg per day.

(Hmm….I am afraid that 3mg is not enough….)

Q5. How about Alpha-Lipoic Acid?

A:  This may work.  Try to take 300mg x2/day.

(Thank you!  Finally there is something possibly effective.)

Q6.  How about Acetyl-L-Carnitine or Glutamine?

A:  I think Alpha-Lipoic Acid is better, but have no objection for them.

(I found the name of Alpha-Lipoic Acid on the front page of some cancer magazine issued in this month, but I also read this medicine may afftect on thyroid.  I already have hypothyroid, so I am going to try Glutamine.)

 

I was told to see him again in four months.  Hopefully something will work and I can bring some good news to him. 🙂

 

Acupuncture: Peculiar But May Work

The neurologist  said medicine was the first line for peripheral neuropathy and if it doesn’t work, he can refer to an acupuncturist (and I can use the insurance.)  I pondered about Gabapentin, an anti-depression med the neurologist recommended, reading the description and some websites. It could cause multiple serious side effects, and it didn’t appeal to me enough to choose it.

Two weeks ago was the worst – not being able to sleep because of numbness, tingling, burning, cramps, and spasms in legs. Yet last week was better. Perhaps it was because of lots of supplements as well as acupuncture I’ve experimented with. I emailed the neurologist that I want to continue what I am taking including acupuncture instead of taking the anti-depression drug for peripheral neuropathy as of now.

My first experience of acupuncture was a little interesting.

The old white-haired man coming out from the back of an old plain office escorted me to his desk and asked what was the problem.

While I was answering  him in English, he was writing a couple lines in Chinese on a line paper.

Then he said, “One session is $40. Let’s start.”

Because I was not sure if he really understood my problem, I asked him,

“Before we start, would you please explain what you will do and how it works?”

“Yeah, yeah, yeah, come this way.”

He took me to a booth, which had a bed.

I asked him again to explain what he would do and how it works.

“Yeah, yeah, yeah, I put needles here, here, and here (pointing some spots on his body.) Change to the gown.”

I was not content with his answer and got nervous, but changed into the gown anyway.

As he came into the booth, I asked him the 3rd time.

“ This is the first time for me and I don’t know much about acupuncture.  Until you tell me how acupuncture works for me – if it’s like Tylenol working only for short time or is able to cure – I won’t pay you.”

Then finally a young guy came in from the back of the office, and explained to me in good English:

In a body there is a circulation of energy called ”Chi”.  If this circulation is blocked with some reason, a problem happens.  Acupuncture stimulates spots to bring the circulation back to normal.  It is curable and safe.”

O.K.  Finally I was convinced and laid down on the bed.  The doctor poked about 8-inch needles on my forehead, left and right shoulders, and calves.  They didn’t hurt except the needle near the left ankle, but as I said it hurt, he changed the spot and then I was o.k. I was still on the bed for about thirty minutes.

Right after the acupuncture, I felt sluggish just like after chemo, but by the night, I felt my body was so right with little tingling more than ever!

The young guy told me to visit twice a week and continue for a few weeks to see the better result.

It was peculiar,but it may work!

Happy with The New Wig

My hair doesn’t seem to be ready to fall off yet, but because I knew it would be coming, I went to a hair salon to shave my hair last week.  I got sentimental as I thought I would lose hair, which took two years to grow back, again.  Yet as it was the third experience, I was surprisingly o.k. to have a skin head, and decided to get a new wig putting away the old one, which I used for three years.

At the store, I tried many: bob, wave, layer, highlight, and even blond one!  Of cause the lady at the store gave compliments whatever I tried, saying, “This also looks so natural and you look beautiful!  Why don’t you buy two to enjoy the different styles?”

Taking a lot of time, finally I picked one and went to pick it up today.

I don’t have to go to a hair salon to color the gray hair or I don’t have to fix bad hair in the morning.  I feel so good with the new wig especially as George liked it on me, and happy, happy, and happy!

new wig

 

The Island Where Cancer Vaccine Is Available

Grand Cayman Island is a British territory in Caribbean Sea. There, a cancer friend, who was diagnosed with stage 4 breast cancer, is trying to receive the most advanced cancer vaccine therapy, Dendritic Cell Vaccine.

Grand Cyman Island

I first learned about this vaccine from my brother-in-law in Japan.  After I shared this with the family of the cancer friend, the family found out that it was also available in Grand Cayman Island, where is much closer to the U.S. than Japan.

 “Order-Made” Therapy

A vaccine therapy is an “order-made” therapy to transform T-cells, one type of white blood cells, which takes the role of immune system and fights against pathogens or foreign objects, by taking out a sample of cancer tumor and teach them how to recognize cancer cells, so that they can go after cancer cells and destroy them.  There have been various vaccine studies but, Dendritic Cell vaccine (teaching dendritic cells, supportive cells for T-cells, how to recognize cancer cells) is the most successful so far according to a website.

The therapy includes only a surgery or biopsy to take out a cancer sample, and four injections during four months with the little side effect of fever that is the sign of  active immune system. The safety has been already proved by Phase l study.

 Why Cayman Island?

I thought the U.S. was the most medically advanced country where anything was possible.  Yet, this may not be true.  Because of the intense regulations of the FDA, there are treatments or medicines, which are approved in other countries but not in the U.S.

Perseus, the medical team picked the Cayman Island because the island is out of the FDA’s jurisdiction, but still close enough to bring patients from the U.S..

According to its site, Perseus followed all regulations of FDA and finished phase l & ll clinical trials for melanoma, and is in the process of approval of phase lll trial.  Yet, probably because the team is out of the FDA’s jurisdiction, it also  makes the vaccine available for other cancer patients, such with breast, colon, head and neck, lung, neuroblastoma, ovarian, prostate, and sarcoma cancer.

I pray my friend can make it to the vaccine!

You Look Beautiful

Golden earrings on a nurse who was preparing for my infusion caught my eye.

Even while I was answering her routine questions, the cute one-of-a kind round earrings shining on her earlobes kept drawing my attention.
“ Your earrings are very pretty!”
As I said, she brightened up and said, “Thank you. Yesterday I bought them at Polo.”

“ When you, nurses, wear colorful clothes and nice accessories, it makes me happy. I know we, patients, have a rough time, so seeing something beautiful is important to lift up the spirit.”

“ Is that so? Then I am going to wear brighter clothes from tomorrow,” said she.

She, who looked Asian in her early forties with dark skin wearing dark clothes, must look healthier and more beautiful in the bright color.

Even caps the nurses have to wear in the chemo wards, look cute if they are colorful and have animals or cartoon characters on them – though they are like plain shower caps. Actually I like them so much that I ordered two of them on line.

nurse cap cap pink

I don’t think red long nails or tattoos are proper for a nurse, but they are women, and it is comforting to be surrounded by beautiful nurses.

Listening to me, she said,
“ My mother-in-law takes care of my kids and she always asks how my day was. It is difficult to find something positive because lots of patients are depressed and our job is tough, but today I can tell her a good story.” and she grinned.

I see. I appreciated my medical staff, who welcomes me with nice smiles and treats me kindly, but they take lots of burdens from the patients and are drained out by the end of the day. They also need lots of support, encouragement, and confirmation of good work. I need to tell them how much I am thankful, or cheered, and pray for their strength more from now on. Then, their smiles would be more radiant, provoking me to smile back, and it will become contagious.

I didn’t tell her today, but I also noticed she was wearing a cross. Next time when I see her again, I am going to say, “ Are you a Christian also? So am I. GOD IS GOOD ALL THE TIME!”

Old Hymn Touched A Lonely Widow

I was invited for lunch by a 87 year-old widow.  She is a wealthy lady who used to have horses and even an airplane, but after her beloved husband passed away, she lives in a big house all alone.  Just like my 86 year old-mother, if you are lonely, you want someone to talk with.  Enjoying  a plate of salmon she cooked for me, I paid full attention to her talk, which changed topics spontaneously.

Then, she started talking about a piano.  The beautiful antique baby grand piano in the living room used to belong to her husband’s family.  Though her mom also played piano, she doesn’t, and after her three sons moved out, she has been only dusting the piano which had no one to play.

She asked, ” Do you play piano?  If so, I’d like you to play something.”

It was such a beautiful piano.  With gratitude, I accepted the request, and sat at the piano.

Opening the hymn book she gave me, I started playing.  Then I heard a whimpering sound.  She, who was listening standing at the piano, was crying.

“I’m sorry, but that was my mom’s favorite song,” saying so, she cried like a little girl.  A simple hymn touched the old vulnerable widow’s heart.

George always encourages me to play piano, which is a gift from God, for someone else, but it was a moment that I was sincerely thankful for the gift, and for the opportunity to serve Him.

Excruciating Pain from Infection

Since last Friday, after dinner, around the teeth I had implanted 5 years ago it has been hurting. The pain became so intense spreading even to my head and neck  that it was almost unbearable.

Holding onto a pain med, I finally visited a dentist.

” There aren’t nerves under the implants any more, so this is an infection.  Do you know what your white cell counts are?”

The dentist asked.

I downloaded the lab result through the iPad.  The numbers have decreased since I started Taxol.  If we don’t have enough white cells, we get easily infected, and infections could kill us.

“This is about the bottom line of the normal range.  You have to be careful,” said the dentist.  Receiving prescriptions of an antibiotic with a pain medicine, I was relived anticipating I would be OK soon.

I am so thankful that I live in the modern world where antibiotics are available.  Also, I am thankful that the dentist took me in immediately, while (I don’t know if I should blame Obama Care or not) it is getting harder and harder to make a prompt appointment now days.

Infection Canceled Chemo Infusion

Calling for a New Medicine

Two tarantulas, big hairy poisonous spiders, jumped on me; one  ripped off my finger, and another bit my head.

“Gyaaaaah!”

I screamed and then George woke me up.

It was a dream.  My infected gum hurt so bad that I had a nightmare- I guess.

Although I was taking the antibiotic  for three days, it didn’t seem to be working.  I needed pain pills more than the direction said.

Last Saturday,the next day after I had a bad dream,  I called the dentist asking for a new antibiotic.  Yet he told me to finish the first antibiotic and let him know how I would be on Monday.

Hanging up the phone, I pondered if I could wait until Monday, or if it’s ok to leave the infection with ineffective medicine.

 No.  I don’t think so.  If this is an infection, probably a Kaiser doctor can prescribe a different antibiotic.

I called Kaiser and then a nurse told me to go to Urgent Care.

Once I started the new antibiotic, the pain went away immediately.  This time it must be working.

 

Unexpected Postpone

However, an unexpected thing happened at the chemo ward on Monday.   I was told that I had to postpone my chemo infusion until next Monday.

“If you have an infection and add chemo, the infection would get worse.  You don’t want that,” said a nurse.

 If I miss chemo, what would happen to cancer?

That was my reaction.  Yet I have had three drugs.  Hopefully canceling one drug one time won’t be a big deal.

Right now fixing the infection completely as soon as possible is more important.   Meanwhile I hope I can have good night sleeps without nightmare!