June, 2015

Going Back to T-DM1

Monday, receiving the approval from my oncologist, I started on T-DM1( Kadcyla) again today.

I have used it in 2013, a little after the FDA had approved this dream med.
As the FDA approved it for metastatic breast cancer, the oncologist first questioned about the use of it for me, who was in remission that time, but at the end she accepted my request, and I was on it for 8 months extending the remission until Dr. Slamon, who invented Herceptin, told me to stop it due to the concern of the side effects, which were the decrease of the platelets numbers and the increase of the liver enzyme level.

However, He told me that I would be able to use it again in future because the reason of stopping was not the progression of disease but the side-effects.

So, I decided to try it again as the 2nd round, though usually the 2nd round is not effective like the first time.

I am wondering if I add one more drug to T-DM1, if it will help the effectiveness. I know a recent clinical trial of T-DM1 and Perjeta showed nothing better than T-DM1 alone, and also have a concern that Perjeta may not be effective for my cancer any way. Despite those concerns, I still hope for some surprise. Or I wonder about adding Abraxane, which is like a brother of Taxol, the med that brought me into the remission, though it will probably worsen the peripheral neuropathy I’ve been suffering since I was on it.

Anyway I will save those questions for the consultation with Dr. Slamon next month. There are quite a few women who have been in remission for 2-3 years with T-DM1 controlling their side effects. I pray that this med will work again for me like those women and give me more time on the earth.

To Pa: When The Saints Go Marching In

Two Days ago, I visited a board & care home where Pa, George’s father was living, again just wanting to be with Ma.

I played his favorite music from Youtube through my iPod for Pa, though he was not responding. A chaplain came to comfort Ma, and to pray for Pa. As he said, “ Do not worry. God loves you and will welcome you, so just rest,” Pa looked breathing softer then. At night as I stayed over at Ma’s place, she gave up her bed for me, saying, “ I slept on the couch last night, too.” Her kindness touched me and made my eyes wet.

Then, this morning, Pa left for God’s Kingdom.

There is a famous jazz song, “ When The Saints Go Marching In”. That was written for a funeral procession.

”O when the saints go marching in,
When the saints go marching in,
O Lord, I want to be in that number,
When the saints go marching in.“

According to Wynton Marsalis who is from New Orleans, this lyric came from Revelation 22:14.
“Blessed are they that do His commandments, that they may have right to the tree of life and may enter in through the gates into the city.”

The music is played slowly to go to a graveyard, and after the burial, it is played faster and rhythmical as being away from the graveyard. I’d like to dedicate this song, which it is said, is still a popular jazz for a funeral procession in New Orleans, to Pa, who loved to dance and music.

two fathers

My Two fathers. They may be toasting again right now!

Pick for My Memorial Service

 

As I posted in a virtual Metastatic Breast Cancer Community, Inspire,  I’ve joined recently, that I wanted to use “When The Saints Go Marching In” for my memorial, a couple people responded to me sharing their picks, which were hymns and worship songs. Knowing there are some people who think the same way as I do, I am excited.

At the time of the memorial service, I would be gone, of course, but sometimes I hear that a soul leaves from the body and is able to see what is going on around, and I even developed a desire to see my finale on this earth.

The list of the songs includes my original song, “You Are Not Alone”, but below is one of the songs I added onto the list. At my service, I want people to find the hope and rejoice with me saying, ” Yey! Kathy finally made it to the Kingdom receiving eternal life!” I am having a fun thinking whom I want to ask to sing and play. I cannot believe what I am enjoying and what God is doing on me. Knowing Jesus or not makes such an incredible difference.

Side-Effects Are Lessening

It has been three weeks since I got off Xeloda. Though my toes are still red, the symptoms of hand-foot syndrome, such as sensitivity with the pressure and heat, tingling, and numbing, are getting less and less.  Now I can wear regular shoes and take a walk again.

Two years ago, when I first used Kadcyla (T-DM1), I was complaining about muscle ache on this blog.  The muscle stiffness, which was triggered by Taxol, the chemo I used in 2012 prior to Kadcyla, was also a problem for a long time: I had to hold something or kneel down to pick up things on the floor.  Yet, so far I don’t have muscle ache yet, and picking up things from the floor is no more difficult.

I have to take a steroid, Decadron, with Taxol and Kadcyla, but I wonder if maybe this steroid has been good for the muscle ache and the stiffness.

Today I was even motivated to do yard work wanting to plant Salvia.  As I made a hole by shoveling, I noticed there were many thick roots under the bottom.  Taking out a hatchet, I swung it down to cut the roots for almost two hours.   As I became out of breath, I couldn’t lift my arms up any more, and my legs were wobbling and barely support myself, I fell down onto the couch.  Yet, I thought it was a good surprise that I could work for nearly two hours!

I am not sure what really gave me back the strength, but regardless of the reason, I know behind the scene there are lots of prayers for me and God, who granted the prayers.  I am so grateful that God, who is almighty and loving, is with me!

 

 

AST, Liver Enzyme, Is Spiking

After Expressing thankfulness to George for Father’s Day with children, I went for blood work today. In the result, though white cell counts, Bilirubin, and ALT, a liver enzyme, were in normal range, AST, another liver enzyme level was spiking from 32 to 40 almost 30%.

Last week, after two hours of yard work, I had to pay with muscle aches, and developed UTI (Urinary Truck Infection). I got tired easily and was sleeping a lot. Yesterday after all children left, I went to bed around 5pm and slept until 8am this morning.

One symptoms of high AST is fatigue, and I wonder if that was a reason why I was so sleepy recently.

When I had Kadcyla (T-DM1) two years ago, AST increased high, but not from the very beginning, and I don’t think I had fatigue like this time. If AST level continues to spike like this, it will be very difficult to be on Kadcyla for a long time.

Since last week I have had a headache, too. The ache can be at the top, side, or back, and it happens during a day or night. I’ve read that once HER2 positive breast cancer spread to the lungs, in 50% of the cases, cancer spreads into the brain. I will ask for a brain MRI tomorrow at the clinic, just in case.

The Father’s Day was the 6th one since my diagnosis in 2010. Each day, each holiday, if I can spend joyfully, I have to be thankful.

Life Can Be Beautiful

I saw a short video, “Denali”, which is a story of a dog Denali, who kept along side of his master, Ben, when he was battling cancer in 2004. Ben beat the cancer, but 10 years later, this time Denali got cancer and died. This video was made by Ben, who is a photographer, as a tribute to Denali.

I ,as a dog lover, am moved deeply always by such a story, in which the master and the dog were so faithful each other and became one till the end.

Denali & Ben

At night in the Bible study, we read the love chapter, 1st Corinthians chapter 13:

“ Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.”

Though it was only Jesus who demonstrated such love perfectly, I noticed I saw this love in the video, “Denali”.

I also noticed this is the reason why I love dogs. They are not only cute, but also very loyal to their masters, never give up, never betray, and keep loving in every circumstance.

The Bible says that the most important commandment is to love God, our Lord, with all our heart, with all our mind, and with all our soul, and to love our neighbor as ourselves. I wonder if God gave a dog to humans as a good example for this commandment. In the video, the narrator quoted from a dog scientist, “ people can learn a lot from a dog. If someone you love walks through the door, even if it happens five times a day, you should go totally insane with joy.”  If we could do so, how much  would we make people happy?

Regardless of any circumstance , even in the terminal stage of cancer, if we practice such love towards God and someone else, life must become so beautiful like the story of “Denali” no matter how it ends up.

It’s not too late yet. I can change my life to be beautiful—I was inspired.

Headache Is Gone

The headache, which bothered me everyday for the last whole week stopped all of sudden yesterday. My right ear was also throbbing and ringing, but it stopped as well.

Yesterday was a chemo day. As I woke up with a headache, I took Tylenol before I left for the hospital, and since then all pains and aches have been gone.

If I think that both aches from the head and the ear stopped together, probably they were related. Maybe Tylenol helped temporary but the real helper was the chemo, Kadcyla (T-DM1). If so, the cause could be cancer.

Is Kadcyla so effective that it instantly suppresses cancer?

If it’s so that is great, but if cancer has spread into the brain, that is serious. I am thankful that I am pain free now, but not sure if this means good news or not.

I can’t wait for a brain MRI.

Wish To Be Better Partner

“Merry Christmas Dad!
We hope you take this website and turn it into something amazing. We believe in your natural talent as a writer and speaker and hope you are able to share it with the world. We love you Dad!
– Soh & Pinky”

Last Christmas, our 2nd son, Soh, who is a web designer, with his wife Pinky, gave a website to George .

Maybe because of the stress from my cancer, George lost his voice in 2012. Since then he has had multiple treatments including an open surgery in February this year, yet he has been still struggling with his weak raspy voice. The website was given hoping to become his new voice.

George has been working on the website. Especially since his last day at Neighborhood Church, he has been in his study day and night until even 2-3 o’ clock in the morning working hard on it, and finally it was launched.

In the website are his faith journey since he was a child, blog, introductions of his new books and seminars, the Bible study, etc. Yes. His long time dream of publishing books is finally coming true by lots of encouragements and nudges from friends and family members.

In his first book, “Dusting For God’s Fingerprints”, he writes:
“Since then my dad had a stroke-dementia-blindness, my wife has Stage 4 Breast Cancer, I have a paralyzed vocal cord and Parkinson’s, my best friend died, and I lost my job. My wife said, “We’ve both turned 60, have cancer, Parkinsons, and no voice – Who the heck would want us?” My only reply, “Maybe God?”… And so we’ve set out on an Abramic journey – old, and not knowing where we’re going – but trusting God does.
I’m tempted sometimes to give up, to give in. There’s enough good reason. It all seems so sad sometimes, and Mr. Toad’s wild ride is getting weary, and yet…
Maybe someday a princess will come, like Megan did in 8th grade, and kiss this old toad, and he’ll become a prince. Maybe there’s still some good news in that old Gospel for me. Maybe we’ll all live happily ever after, after all.”
When I get down, George always encourages me; lifts me up. Not only me, but he encourages anyone who is in need or in despair. That is his gift and vocation. He is always dependable– I thought, but actually he has carried lots of burden. My comment put more weight on him. I was too oblivious to even think about his pressure. I know his faith is strong, but the leader must face much more enemies than the followers. I feel sorry for him and bad that I was insensitive.
I have to pray for him more intensely. I have to be more kind, patient, and understanding him. I pray God to sustain my life a little longer so that I can be his better partner.

Dearest Partner

This is a touching beautiful dog story again I found in Pinky, the daughter-in-law’s Facebook.
blind dog
Those two shabby old dogs were rescued by an animal shelter organization when they were abandoned and roaming around. The white dog is totally blind, but the ugly bull is guiding the white dog wherever they go. If they are separated even for a few minutes, they bark and whine being stressed out. Although they are not biologically related, how strong their tie is!

According to the animal shelter, perhaps they were abandoned because they were too much to take care of for the owner.

Having a handicap, old, and abandoned—the story sounds so familiar! Yet, they are always together – never depart from each other.

I have to learn a lot. It was inspiring.