September, 2016

While Running Fever

While I was running a fever, August was gone. Yesterday I received chemo because the weekend fever was gone, but at night it came back
and this time it climbed up to 101F. I thought I had to go to ER again, but thank Tylenol! My temperature went down though I am still depending on this great med.

Meanwhile, as I got an email of the confirmation of the clinical trial change from the oncologist, I requested NCI to resume the screening.
I hoped the prompt reply, but it took 5 days including the weekend to receive it. During those days I was on pins and needles, thinking
I might be rejected because I am a flip-flop. If this were initiated by the doctor, this kind of worry would be unnecessary. Yet since I declined her choices, I have to take all the hard work.

Anyhow, I noticed that when I was sick, I was very sensitive; easily losing control. Remembering my mom in Japan, who is now 89 and declining in her health quickly recently, taking care of me when I was sick in childhood, I missed her so much that I got tearful. Receiving a short message of “I love you!” from my son, I got tears again, and then today by a rude scam call (714-917-9404). I snapped immediately and was shouting over the phone like a nutcase.

I am glad I didn’t vent on George, who is taking care of me so hard despite the moments of temptations.

David’s Prayers

“O Lord, how long will you forget me? Forever?”
“Why do you look the other way? Why do you ignore our suffering and oppression?!”
” “Wake up, O Lord! Why do you sleep?”

In Psalms of the Old Testament David, who united Israel around four thousand years ago, prayed so bluntly throwing out his crude feelings to God. He must have been desperate to survive from enemies. Yet It was refreshing for me to know that it’s OK to pray persistently and straightly like he did.

God is not a magic lamp or wand, which grants everything we ask, but He is the Creator, who has an incredible vast plan of our salvation knowing what is the best for us. I understand that He is not my servant but the Master so I need to pray that His Will be done instead of my will, like Jesus demonstrated in Gethsemane. I didn’t find the word “ Thy will be done” in Psalms but I can tell that David’prayed from the bottom of his heart or as if he were a lost child seeking his parents.

He committed big sins: stealing his faithful soldier’s wife and killed him sending him to the front line of a battle field. In spite of that, he was an apple of God’s eye.

“Have mercy on me, Oh God, because of your unfailing love.”
“Wash me clean from my guilt.”
“Our hope is in you alone.” “You are my rock and my fortress.”
“O Lord my God, I will give you thanks forever!”
” I love you Lord;; you are my strength. ”

He was totally 100% depending on God, clinging, trusting, and seeking Him more than anything, and that’s why God loved him so much.

I pray hard if I am desperate, but there are times when I doubt if He would listen to what I pray or afraid of asking too much, and then my prayer becomes passive. Yet He is my Father, who loves me more than anyone else. I don’t have to be afraid of asking miracles. I need not to forget His Grace and Marcy, remember His voice;His teachings, and the most importantly trust in Him no matter what. Psalm is now the model of my prayers.

Respect The Other’s Choice

Receiving Kindness is difficult

A friend sent me an article, “Ways to help the dying; what can you do”, which was written by a cancer lady a few months before her passing away. In the beginning of the article she said that it is difficult to ask for help even if someone says,” “Let me know if there’s anything I can do”. It is so true. Real kindness is so powerful that it brings encouragement, comfort, peace, and most importantly God’s love. Yet receiving kindness is as difficult as being kind to someone else.

The reasons are: Organizing the helpers is a hard work; it requires humility to accept help; we don’t want to be a burden for someone else or don’t want to owe obligation too much; we don’t want to be looked at with curious eyes and certainly want to avoid to become food for gossip; pleasing someone’s satisfaction to help us is a heavy burden, etc.

Lesson of being humble

As a Japanese I tend to worry how to return the kindness and get reluctant to receive it. Yet in such a moment, I recall a story that Peter refused Jesus offering to wash his dirty feet. The night before Jesus was arrested by Romans, He had the last supper with his 12 disciples. At that time He washed his disciples dirty feet one by one to demonstrate how to help each other. When Peter’s turn came, he said, “ No way! You are not going to wash my feet.” Then Jesus answered, “Then you won’t belong to me.” So after all he let Jesus wash his feet.

When someone offers me to wash my dirty feet (help), if I decline it, my relationship with the person stops there, but if I accept the help, the relationship becomes deeper.  The help or the kindness comes from God—if I think so, that motivates me to be humble to accept and reduces the idea of obligation to return the favor.  The Bible calls kindness you can’t return or you don’t deserve God’s Grace.

How to be kind

If I am on the side of offering help or kindness, I do so thinking behind that person is God. I have received so much Grace that it is never enough to return the kindness. If I am giving kindness for God’s sake, even if there is no ward of “thanks”, I should be OK.

When I had a ministry for Japanese organ transplant patients and their families, there was a family who raised more than $1 million as a medical cost by a special TV donation program. When the transplant surgery was done, the TV station asked the parents, who stayed up all night being anxious, for a special interview. As the exhausted parents asked if the mom could be excused and only dad would be in the interview, the answer was “ What do you think you are after receiving so much money from us?” The poor parents had no choice and had to accept everything the TV station demanded. This is an extreme example, but if there is a hook or expectation behind the help or kindness, this is like sales, or manipulation.

Love of respecting the other’s choice

I believe the most important basic to offer help or kindness is to respect a person’s choice. Even if we think we know better, or offering the best, we should ask if he/she likes it or not, and respect his/her choice.

In Japanese culture there is a virtue of consideration. Even if it’s your desire, Japanese would say, “No thank you” as a politeness. Because we assume “No, thank you” is not true, we say, “ Please don’t hesitate,” and give it any way as a consideration. This custom works most of the time beautifully in Japan, but if “No, thank you,” is real, this is stressful.

When George didn’t know Japanese culture yet, as he was invited to dine by Asian friends, he would be surprised by the host, who picked the food from a menu without asking him what he would like to have, or kept pouring the beer saying, “ Don’t hesitate, be free.” although George really meant “No thank you.”

I also remember some cancer patient writing that one day a bunch of friends came over her house with a lot of food, which she could not eat, saying to cheer her up. She welcomed them reluctantly trying to be polite, but she was totally exhausted to please the friends.

We try to please the other by doing what we think good for the person, but if it didn’t please him/her, this way of consideration or kindness would cause a damage.

“Wash the feet each other”

Perhaps because of this reason, I have read a famous Japanese Buddhist writer saying that being quiet is better than reaching out because we don’t know exactly what she/he wants and we should not offend her/ him.  I understand the feeling but this is opposite of the Jesus teaching.

God gave us free will saying “Yes,” or “No,” when he created human beings. Even when we go the opposite way from His will, He continually persuades us but never forces us to correct our choice because giving choices and respecting the choice is a basic form of love. Then we all need to apply it when we want to be kind to someone else.

My experience of kindness has developed a strong affection towards God, and I am so thankful for those who have given me help or kindness since the very beginning of my cancer journey.  Receiving so much Grace, my goal is to  obey His teaching to keep washing the dirty feet of each other disciplining myself to be humble, and respect the other’s choice.

Waiting, Waiting, and Waiting

“The nurse will contact you sometime today”
After I notified to go back to the vaccine trial, the patient care coordinator of the vaccine trial emailed me on 8/30. Waiting patiently for two weeks, I was disappointed again this Monday without finding any email from NCI. As I emailed again to ask what was going on, the phone call from the clinical nurse specialist came in right away.

” You haven’t submitted the progress note (the treatment history) yet. Ask your doctor to fax it,” said she.

I didn’t? I have thought I had sent all information a couple months ago. If I had missed something, I wish you had told me then—thinking so, but I said “OK.” After I hung up, I emailed my oncologist requesting the progress note, but the out of office reply came promptly.
By then I noticed, I had the medical record department send all the documents including the treatment history through email. As I checked the old emails, sure enough that it was done on 7/1 and since the attached documents would have expired in 12 days, I also had sent a reminder to her to download before the expiration. Because I didn’t hear from her, I sent the copy of email to the director and received the reply saying she would make sure the documents would be downloaded.

” I believe I sent the treatment history on 7/1. Will you please check if you have it or not?”
I emailed the nurse but again no reply. So I phoned. She answered, but said bluntly ” I have an emergency patient waiting. I can’t access the document. Just send the fax,” and hung up though I wasn’t finishing a sentence. She is the clinical nurse specialist. Probably I will see her often once the trial starts. Yet I already have a bad impression.

Meanwhile the patient care coordinator sent me the consent forms again saying the previous consents I signed were too old, so I had to sign them again. I was getting weary. I thought I could avoid this redo process, but I guess not. Instead of waiting for the oncologist, who was away from office, reply, I should just go to the medical record and ask to fax the documents once again–I thought.

Looking at my difficult face, George told me, ” Being a patient is your job.” He is right. I have time to take care of this. I grabbed the car key and drove to the medical records.

Yet, the bad luck continued. Standing on the line in the medical record office, right before my turn, I got a stomachache and had to go to a bathroom. As I was afraid, when I came back, the line became longer. “Kathy, be patient,” Telling myself, finally I walked up to a window.
“Will you please fax them?” I asked, but the lady told me, “We don’t do fax.”

I understand that fax is now out of date, but the research nurse asked to fax. My choice is to pick the documents up and fax by myself.

“How long will it take to pick up?”
“3-5 days.”

So it could be next week. Ahhh. My patience is running out. Oh Lord, how long do I have to wait? Help me before I become a grouchy old woman!

Completion Socks for Peripheral Neuropathy

The toes are numbing and tingling. Up to the knees there is discomfort like glue was all over on my legs. The muscles got weak so climbing stares, squatting, or running is very hard. If I lie down, I have burning sensation, and muscle cramps. These are my symptoms of peripheral neuropathy, which is a major side effect of chemo. Since 2012 when I had Taxol, I have experienced peripheral neuropathy and through numerous chemos, it got worse gradually in spite of some drugs, supplements like vitamin B, and even acupuncture, and now it interrupts my sleep.

During the day time the symptoms are mild, so I wondered maybe they were something to do with blood circulation, and tried compression socks, which are recommended to prevent a deep vain clots on a long hour flight travel.
As I used the socks with a pain relief cream, it worked and I could sleep well without burning sensation and cramps. So I went to get one more pair of the socks.

A man at the store said usually the socks were not recommended during sleep because the users complained that the socks got too tight and hurt. Yet not me! There were many kinds including stockings, but as the prices were pretty high, I decided to get only a pair of socks for a good night sleep. I wish I could cure the neuropathy, but I am thankful that at least I can sleep better now.

A Man Who Recovered From Death Bed

A cancer friend I met recently told me this story with great excitement:

At her church, there was a man who had been fighting against cancer for quite a long time.  The church members were praying for him, but in June this year before she left for Japan, she heard the announcement that he had now only two weeks to live and would have a hospice care.  After she came back in August, however, she was stunned seeing him in short pants radiating his eyes.  He walked in the church without a walker or even a cane.  Since he used up all drugs, he was not on any treatment. This was a pure miracle.

The Bible said, “If two of you agree here on earth concerning anything you ask, my Father in heaven will do it for you.”–Matthew 18:19

This must be the power of prayers.  I have heard miracle stories and even myself has experienced the prayer that healed my hypothyroid a long time ago though, the story which happened so close to me, is powerful.   We should not give up praying.  Even if we were disappointed with prayers, we have to trust in God, keep praying, keep following Him till the end.

Paradox of Marriage

Bible said, “Love suffers long.” (1 Corinthians 13:4) Because of this, the wedding vow says,
“I promise to love her/him in sickness or in health, in poverty or in wealth, in good times and bad – till death shall you part. ” However, reality is one out of three couples in the US divorces. It is obvious that marriage is difficult.

A wife has her own ways and so does a husband. When there is conflict between them it creates burdens and if the burdens pile up, the weight may causes sickness. Yet, if there is the words “Thank you,” for the long suffering, at the end, all the burdens and weight perish at once like bubbles, I think.

I have a Japanese friend, who served her mother and father-in law for a long time living together. When she was young, she was scolded in front of her kids about how she talked to the father-in-law was arrogant.” Her husband pretended like he didn’t listen to it. She wanted to divorce many times, but each time when she cried to her mother, her mother encouraged her, saying “Losing is winning.” Eventually she received respect and appreciation from not only her parents-in-law, but also her husband, kids, and relatives. Her perseverance paid off.

The real meaningful word, “Thank you,” is very powerful because the words cease long suffering. At the end on the earth, the words we want to hear are maybe “I love you,” and “Thank you very much.”
And if we can hear from God saying, ” You treasured the gifts I gave you with love (long suffering). Well done!” it must be the gold.

It is interesting that if we choose to suffer long for the partner instead of pursuing own desires and interest, we find real peace, love, or the best reward at the end. When I shared this paradox with George, he said, ” That’s the meaning of ‘ If you cling to your life, you will lose it, and if you let your life go, you will save it.'” Maybe the Japanese saying, ” Losing is Winning” has the same meaning.

Even if we feel alone, or nobody is paying attention to our suffering or relentless efforts, God is watching. He even offers help saying, “Lay down your burden on me.”

I, who once divorced, felt shame listening to my friend’s story, but God gave me a Second chance. Life is short. Asking for lots of God’s help and guidance, I have to do a good job this time.

One Day Is A Thousand Falls

Monday, a week after I had requested the treatment history and some others, I went to the medical records without being able to wait for the phone call hoping the documents were ready. Yet, a lady at the counter told me, ” Not Yet…probably tomorrow.” Disappointing, but telling myself, “One more day,” I left the office.

Tuesday, after chemo infusion and picking up some meds at the pharmacy, I headed to the medical records again. As I gave the medical ID card at the counter, a lady looked at the computer and then left for the back. “Finally!” I thought. She came back with a thick blown envelop and gave it to me. It was heavy. Do I have to fax all of this? –I wondered. I sat at a chair and opened the envelop. The top page of the thick stapled documents said ” OUTPATIENT DIAGNOSTIC IMAGING” It was a report of an ultrasound dated on 8/4’16. I turned the page. Still I see the block letters saying “OUTPATIENT DIAGNOSTIC IMAGING” . It was a CT report I had in May. I flipped through about 100 pages of the documents. All of them said, “”OUTPATIENT DIAGNOSTIC IMAGING” and there was neither the treatment history nor the ECHO report which I needed. I looked again the inside of the envelop, and found a small envelop, which looked like a CD inside. I opened it anyway and then found a copy of the medical record request sheet enclosed. On the sheet I put several check marks, I noticed someone added extra circle on ” Diagnostic Images.” Last week when I came to request the records, I handed a copy of the NCI medical information request list, but that copy was not included in the envelop.

I started being overwhelmed that I didn’t even feel like to go back to the counter and ask the question. I had been eagerly waiting for this useless package feeling like a day were  a thousand falls. I had blamed the NCI trial nurse specialist for losing the fist hand medical information, but probably from the beginning, the treatment history was not included because of the same mistake.

What should I do? I am here at the medical records because the oncologist sent me to request all needed information for the vaccine trial. Yet even if I request it again, I am afraid that here they won’t be able to make such a specific document. I took out the iPad and emailed my oncologist for help.

Will she help me faxing the needed information or send me again to the medical records? How many more days will it take to receive her reply?—I don”t know.

I recalled the middle school chemistry tests I failed over and over though I studied hard. Now I feel the same. I feel like I will never reach the vaccine.

I opened the email again and started topping the keyboard. This time to God. The Bible says, ” Don’t worry about anything; instead, pray about everything.” (Philippians 4:6) My way of praying is emailing God.
” Heavenly Father, Please rescue me! I keep failing and now I get insane. …” I typed what I felt straightly. ” In Jesus name, amen.” I finished the email and hit the garbage icon.

Maybe Tomorrow

“He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.
Do not be afraid of the terror of the night, nor the arrow that flies in the day.” -Psalm 91:4-5

Reading the Psalm, I recalled last Thursday night when I got so frustrated with the clinical trial situation, witch has gotten nowhere, that I could not sleep. The sparks of frustration caught fire on George, and then invited series of anxieties such as his health, his job, future finances, the kids safety and future, etc. It was the attack of” terrors”.

Next morning, after three days of the silence without no reply from the oncologist, I wrote a complaint email to Kaiser, It was when I was about to click the “send” command that the phone rang. Finally, the oncologist accepted my request and her case manager told over the phone that she would fax the missing medial information to NCI.

Praise the Lord!

Deleting the complaint, I breathed a deep sigh of relief: Next week I will hear from NCI about when to fly there. –I set the expectation high.

Yet no email on Monday and Tuesday.

September is almost over and the time is passing like the sands slipping down on the palm against my will to hold them. Yet, the Words of the Bible comfort me. The Lord never makes mistakes. He is faithful. Maybe tomorrow… I trust in Him to bring me the good news.

Reply Came

I waited on Monday and Tuesday, but on Wednesday, getting afraid that I might waste another week, I emailed NCI asking for the confirmation of the fax my oncologist’s office sent last Friday.

One hour later the reply came and I was asked if I could go there for the physical screening on the week of 10/17. Finally I can mark on the calendar! Although I was not given the exact appointment yet, I got excited and started searching for a flight and a hotel.

This is not for the vaccine shot, but still the screening. I could be disqualified somehow.
Cancer could be growing since last CT in May.
Frequent required CTs during the trial may cause leukemia.
The vaccine shot may make me sick.
Most importantly, the vaccine may not work as the oncologist is afraid of.

This is a huge gamble, but I feel like this is what God is leading me for. Even if I’m wrong, He is with me. Trusting in Him, I will work the Valley of the Shadow of Death.