RANDOM THOUGHTS

Well, it is getting close to my next visit to the National Institutes of Health on the East Coast – more tests, more drugs, and then an informative visit with Dr. Chaya Venkat, the most wonderful patient advocate for leukemia. I will be meeting with her and several others in her living room in Colombia, Maryland. This blog posting is about my random thoughts as I am getting ready for the trip.

CRAP IN MY LIFE

Cancer has a way of making me stop and reflect upon my life journey. I realize that I have gratitude for all my blessings – and I have many. I have also come to terms with the fact that I am oddly respectful of all the negative and painful events in my life that have taught me my life lessons. It wasn’t pretty, but it made me who I am today.

When something that I perceive as negative or painful happens in my life, I ask myself:

“What did that teach me? What am I supposed to learn from this in my life journey? How can I make this event transform me into a better human being? Who do I NOT want to be like?”

Do you remember the children’s song “Sticks and stones will break my bones, but words will never hurt me”? Oddly enough, it is usually the words (or lack of them) that are more painful in our adult life. As we get older, it is not the details of the event that we remember, it is how the person made us feel that lingers in our heart and often still causes pain after all these years.

As I reflect back on my life, there are people I hope will forgive me for my real or perceived bad behavior. There are others that I need to forgive – especially for their angry and cruel words directed at my family or me.

WORDS OF MY MOTHER

My mother was one of the most positive people I have ever known. She did, however, hate hospitals and hated to be alone. So one of the nights I spent with her shortly before she died, we were up all night giggling and laughing about the stories of all the guys she dated before she met my Dad. The oncology nurse barged in the room and sternly pronounced, “If I hear any more noise from you two, I will kick you out of the hospital!” My mother, answered back, “You promise?!?” The nurse then realized what she had just said to a terminally-ill cancer patient.

Sorry folks. Having a positive attitude does not cure cancer, but it certainly makes life a lot more bearable for the patient and his or her family and friends. I am not a Pollyanna, but I certainly know that a negative attitude can make you sicker, and it can make life miserable for everyone who loves you. It is such a waste of limited energy. I have learned to avoid toxic people like the plague, and my life has improved substantially.

I have been thinking lately why I am one of the few people that I know who is not on “happy pills.” One of the reasons I believe is because I have such a demented sense of humor and I can find humor even in the most dire situations. I learned that from my Mom. It is definitely a survival tool and a gift she gave me. I thank her every day for teaching me that.

WORDS OF MY FATHER

When I was a child, I was one of those who learned by observing others. My Dad said that was the Japanese part of me. It saved me a lot of pain.

In my life I witnessed the wrenching pain caused by people being cruel to each other, and I learned the importance of mercy and kindness.

In my life I witnessed people stressed out with anxiety, and I learned that I would rather choose inner peace and meditation.

In my life I witnessed the emotional damage angry people have on others and themselves, and I have learned about the importance of gentleness and self-control.

It is interesting that these are also the words of my father. I thank him everyday for teaching me kindness, inner peace, and gentleness. These were teachings from a man who fought in two wars, was wounded, and had his best Army buddy blown up next to him in the foxhole.

THE ULTIMATE REALITY

You do understand that none of us are leaving this world alive? Whether I am blessed with many more years or I die sooner than I like, that is just how it is. As I have said many times before, I am in a win-win situation. I win if I stay alive for years to enjoy my friends, children, and soon-to-be 11 grandchildren. I know where I am going if I die, so I win when that happens. So I don’t care to waste my time wallowing in the quagmire. I like to get on with my life and be grateful for every second.

I am still a work in progress. There is much to be said about a little imperfection. Some times I need to remind myself that I have many blessings in my life. Some times I need to remind myself that there are people in this world much worse off than me.

A SELF-INDULGING MOMENT

Most of the time my blog updates are very clinical. I become the “pigmy nerd mama” that my son used to tease me about when he was in junior high school. This is because that is how I am best able to cope with the diagnosis of leukemia. My friend Nancy understands this well. I take the scientific approach and report the facts, and that has a way of removing me personally from the reality of the stupid cancer. I become the university researcher – a role I have been quite comfortable with for many years, since I left my life as a creative and art director.

The truth is that several women I personally know who have cancer have died way before their time. And moments when this happens cause me to pause and doubt my mortality… But only for a moment, because I only give myself a moment for the luxury to be self-indulgent, and have my self-pity party. And then I must move on, because life moves on.

One beautiful woman with the sweetest disposition died because she forgot to value her life more than the value of her job. She spent hours working overtime to be loyal to her company, and did not seek out cancer specialists who could have saved her, until it was too late. Her family was and probably still is very angry about this.

Another beautiful woman tried every treatment possible, until her body could take no more. She made the brave decision to stop the chemo treatments and die gracefully. I remember giving her a foot massage when she was in the hospital and we laughed about how hospital rooms should be made into spas where sick people could be pampered and powdered. I still think it is a great idea.

And then there was my beautiful friend, who was dismayed because the steroids she had to take made her gain weight and gave her a chipmunk face. “Like to shop?” I asked her. We spent the afternoon trying on all the stretchy and layered clothing that hide imperfections, and smelling different oils from India. It was a girls’ day out and we had a blast. She died the first day of my cancer treatment when I was at National Institutes of Health back East. I couldn’t figure out why she didn’t return my emails and voicemails. In all the chaos, the women in my cancer support group (including me) were not notified until a month after she died.

My friends and my family have been instrumental in supporting my journey. One of the most delightful comments I got was from my friend Laura who told me that she forgets that I have cancer, because I don’t look or act like I do. She asked me if that was a bad thing. I said “absolutely not.” Because you see for that moment in time when we talk and laugh, I am the La Verne she has always known. I am not “La Verne, who has cancer.”

But there are moments when I need the personal confirmation from friends and family that they understand the severity of the invisible face of cancer. I truly value those people in my life who share their time with me, for time is the most valuable gift anyone can give me.

P.S.: I hope this message was not too much of a downer. Sometimes when I write, it gets it all out on the table, and I can move on. The glass of red wine (which I cannot have with this clinical trial) would have really helped. I did buy a bottle of red Zinfandel to send to Dr. Keating; however. He can enjoy it for me…

P.S.S.: This is an anonymous quote about time I would like to share with you. It is a little corny, but hey, what’s new?

Have you been to the bank?

Imagine there is a bank that credits your account each morning with 86,400. It carries over no balance from day to day. Every evening it deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course!
Each of us has such a bank. Its name is TIME.
Every morning, it credits you with 86,400 seconds.
Every night it writes off, as lost, whatever of this you have failed to invest to good purpose.
It carries over no balance. It allows no overdraft.
Each day it opens a new account for you.
Each night it burns the remains of the day.
If you fail to use the day’s deposits, the loss is yours.
There is no going back.
There is no drawing against the “tomorrow”.
You must live in the present on today’s deposits.
Invest it so as to get from it the utmost in health, happiness, and success!
The clock is running.
Make the most of today.
To realize the value of ONE YEAR, ask a student who failed a grade.
To realize the value of ONE MONTH, ask a mother who gave birth to a pre-mature baby.
To realize the value of ONE WEEK, ask the editor of a weekly newspaper.
To realize the value of ONE HOUR, ask the lovers who are waiting to meet.
To realize the value of ONE MINUTE, ask a person who missed the train.
To realize the value of ONE SECOND, ask a person who just avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who won a silver medal in the Olympics.
Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to spend your time.
And remember that time waits for no one.
Yesterday is history
Tomorrow is mystery
Today is a gift
That’s why it’s called the present!!

Cycle 3, Day 1

UPDATE

Just returned from National Institutes of Health (NIH) in Bethesda, Maryland. I am now beginning my Cycle 3 of my cancer treatment with the experimental drug Ibrutinib (PCI-32765).

LYMPH NODES

According to the CT scan, the largest lymph nodes under my arm pits (there were 15-20 of them) have been reduced to eight enlarged lymph nodes. I had lymph nodes in my abdomen, which are smaller now. The lymph nodes in my neck and clavicle area are also smaller. So this is moving in the right direction. I will receive the full CT scan report in about two weeks.

WHITE BLOOD COUNT (WBC)

In the past month my white blood count has decreased from 135,000 to 110,000. This is good news. Dr. Farooqui told me that the participant who has been in this study the longest has been taking the drug for 8-9 months and he still has not normalized, so don’t be disappointed if I am not. As you recall, normalization of the white blood count is between 3, 500 to 10,000.

Absolute lymphocyte count (ALC) is 104.05 K (normal is 1.18-3.74 K/uL).

BONE MARROW BIOPSY

I will receive the results of the bone marrow biopsy in about two weeks. I will post the results when I get it.

OTHER FINDINGS

My spleen is the same size.

Neutrophils are low at 5.3% (normal = 34-71.1%). Neutrophils are produced in bone marrow and are the body's primary defense against bacterial infection and physiologic stress.

Lymphocytes are 93.8% (normal = 19.3-51.7%).

Monocytes have gotten lower in the past two weeks from 1% to  0.4% (normal = 4.7-12.5%). Time for my B12 shot.

Eosinophils are low at 0.4% (normal = 0.7-5.8%).

These are very helpful in defending the body against parasites.

Eosinophil Absolute is high at 0.44 K/uL (normal = 0.04-0.36 K/uL). Eosinophils become active when you have certain allergic diseases, infections, and other medical conditions, but I do not understand why the Eosinophiils are low and the Eosinophil Absolute count is high. This is a question for my hemotologist/oncologist I see next week.

Basophils are 0 (normal = 0.1-1.2%). Basophils protect the body, killing bacteria and parasites, including external parasites such as ticks. Basophil Absolute is low at 0 (normal = 0.01-0.08 K/uL).

Beta-2-Microglobin is normal at 1.5 mg/L (normal = 0.9-1.7 mg/L).

EXPANDING OUR CLINICAL TRIAL

The last I heard from Dr. Farooqui was that he had met with the drug company on numerous occasions and the stakeholders were NOT going to expand the study. Well the good news is that the drug company changed their mind!

Originally the NIH clinical study had slots for a total of 64 participants (two cohorts -- Cohort A with 32 participants who were over the age of 65, and Cohort B with 32 participants who had 17p deletion, which trumps everything since it is a poor prognosis). The drug company agreed to add six more slots for untreated patients with 17p deletion.

Dr. Farooqui also mentioned that when the drug will get approval (probably in about two years), it will be for relapsed CLL/SLL patients. MD Anderson in Houston and NIH are the sites that are doing studies on untreated 17p deleted patients. More research will have to be done on untreated 17p deleted patients before the drug company approves the drug for them.