Things are better…good enough for now.

I started on high doses of cyclsporin and my red blood cells are living longer.

Now it has been 2 weeks since I received RBC’s and expect my counts to last to the end of the week.  I still need platelets every 2 days.  But I keep my eyes on those numbers, too.

They performed a repeat bone marrow biopsy Mon.  Hopefully there is a clearer picture of what’s happening.  One of the drugs I was on, fuzzied my results before.  I wasn’t in pain till after when I felt like they dropped me on my hip, which they did not!

The drug is really strong, makes me feel cold and I rest a little more.  I’m keeping the highest dose now, til something stabilizes in a year or so .

So back to waiting for 10 days for results.  I am more optimistic than the director is, but is some  reason I get to experience all thia

Mind control

I’m doing ok.  I still feel fine and use that as my guide to daily life.
I still don’t know what God has in store for me, so I take one day at a time.  I want to take the waiting out of my life and somehow return to a normal state of mind of accomplishing what he has in mind for me.  It’s the waiting that bogs me down and I want to move along on life.
I have the faith to believe I will be well and the hope that God has that plan for me.!!

Enjoying Each Day as it Comes

At my last doctor visit, my counts were stable, even if it took drugs to accomplish it.   I got 2 weeks until my regular check up in stead of one. We’ll see how stable they really are!

I have two options just now for my recovery.  We are looking for another possible bone marrow donor, using my son and sister as haplo ( half) DNA matches and looking in the Bone Marrow Bank for maybe a new untapped donor. We tested my daughter and I have antibodies against her and she’s not a candidate.   I have major antibodies that I have developed over the years to complicate donor matching  possibility.  The testing is in process and maybe I’ll know by mid-end of September for the haplo-identical transplant.  It is an experimental option, but has great potential once it tis perfected in the years to come.

The other option is to endure and go day to day.  I have to wake each day and plan what I can accomplish that day.   Sitting doing nothing is mentally and physically deteriorating.  I am getting stronger and have energy to walk a little and do service projects as long as I pace myself and throw in a nap now and then!

So, when I say enjoy each day as it comes, I pray my counts will remain stable and maybe even improve on their own.  That is my second option for recovery.  The doctor sees my stability as good for now and encourages me to get out and get a life.  With the WBC booster drug, Neupogen, I don’t have to fear infections as before and may as well go to meetings and lunch and movies as I want.

I’m feeling stronger, although that doesn’t reflect my actual leukemia status. It doesn’t matter.  I do as much as I can when I can and enjoy life!!  Hope you do, too!!

Better news

Wasn’t feeling so emotionally good last week.  Cell counts going down and having to go on white cell stimulant shots to protect me from infection.  Then I heard that Kerstin cannot be a bone marrow donor for a second transplant due to my antibodies that are partying up a storm against her and everyone.  So,  I didn’t say or do much.

But a week has passed.  We are mostly waiting for my bone marrow to self kick start now that the disease is gone.  The donor transplant was successful in accomplishing that. Yea.   A second transplant within the sister / kid range is possible.  Kerstin is out.  Greg is being tested.  I bet antibodies will be an issue.   We will look at my sister’s DNA results and reevaluate her now that we are considering a haplo transplant ( 1/2 matched DNA) within the family.

And my counts have stabilized.  The white count medicine is helping and platelets stopped dropping.  It was the platelets that concern me the most because we are not doing anything but letting my body respond and they were doing great by themselves and then started to drop. So, today I feel good!

Physically I am getting stronger.  With my white cells increasing, I can get a life and attend social functions, especially if outside or small groups. attended a fun picnic and baby shower.  A movie is on the docket for Friday. The doctors and I agreed to ‘ get a life’ within reason. 🙂  I still avoid the crowds at church with lots of kids and soccer games ( go Real Salt Lake).

So, I am emotionally, physically and spiritually back on track.  My love to yu all.

Getting stronger

With Kerstin here last week, I dedicated myself to increased walking in the morning.  I don’t like to get up and get ready, but once in the fresh cool morning air, I feel rejuvenated and energized.  This week, I’m starting 3 times around the block.  Not sure on that energized part because I need to rest when I get home.

No change in bone marrow status.  The Neupogen increases my WBC’s to fight infection.  We’ll see on Thursday if it kept the increase.  If not, more shots.

I work on keeping my physical, mental and spiritual stamina in the meantime.  I do what I can and leave the rest to the Lord.  It’s too much a burden to carry alone!

Life’s Greatest Joys

President Henry B. Eyring, First Counselor of the Church of Latter-day Saints says “The greatest joys and the greatest sorrows we experience are in family relationships.  The joys come from putting the welfare of others above our own. That is what love is.  And the sorrow comes primarily from selfishness, which is the absence of love.

The ideal God holds for us to form families in the way most likely to lead to happiness and away from sorrow. A man and a woman are to make sacred covenants ( vows) that will put the welfare and happiness of the other at the center of their lives.  Children are to be born into a family where the parents hold the needs of children equal to their own in importance.  And children are to love parents and each other.” (Ensign. Nov., 2009, p.70.)

I love my family . Peter and I have a blended family and we have managed to build loving relationships with them all.  There is sorrow, sometimes, but, I choose the gift of love and forgiving to maintain family stability.  They change me to be open to the Savior’s example.( Darlene lesson 5/23.2010)

Barr family in CA 12/2009

Barr's and Hein's in CA
Adult children in UT 12/26/09
Grandkids in UT 12/26/09 including almost grown up Jessey 15 and Jeremy 16!

What is the purpose of life?

Pastor Warren is the person who prayed for President Obama on the day of his inauguration.

You will enjoy the new insights that Rick Warren has, with his wife now having cancer and him having ‘wealth’ from the book sales. This is an absolutely incredible short interview with Rick Warren,  ‘Purpose Driven Life ‘ author and pastor of Saddleback Church in California .

In the interview by Paul Bradshaw with Rick Warren, Rick said:

People ask me, What is the purpose of life?

And I respond: In a nutshell, life is preparation for eternity. We were not made to last forever, and God wants us to be with Him in Heaven.

One day my heart is going to stop, and that will be the end of my body– but not the end of me.

I may live 60 to 100 years on earth, but I am going to spend trillions of years in eternity. This is the warm-up act – the dress rehearsal. God wants us to practice on earth what we will do forever in eternity.

We were made by God and for God, and until you figure that out, life isn’t going to make sense.

Life is a series of problems: Either you are in one now, you’re just coming out of one, or you’re getting ready to go into another one.

The reason for this is that God is more interested in your character than your comfort; God is more interested in making your life holy than He is in making your life happy.

We can be reasonably happy here on earth, but that’s not the goal of life. The goal is to grow in character, in Christ likeness.

This past year has been the greatest year of my life but also the toughest, with my wife, Kay, getting cancer.

I used to think that life was hills and valleys – you go through a dark time, then you go to the mountaintop, back and forth. I don’t believe that anymore.

Rather than life being hills and valleys, I believe that it’s kind of like two rails on a railroad track, and at all times you have something good and something bad in your life..

No matter how good things are in your life, there is always something bad that needs to be worked on.

And no matter how bad things are in your life, there is always something good you can thank God for.

You can focus on your purposes, or you can focus on your problems:

If you focus on your problems, you’re going into self-centeredness, which is my problem, my issues, my pain.’ But one of the easiest ways to get rid of pain is to get your focus off yourself and onto God and others.

We discovered quickly that in spite of the prayers of hundreds of thousands of people, God was not going to heal Kay or make it easy for her- It has been very difficult for her, and yet God has strengthened her character, given her a ministry of helping other people, given her a testimony, drawn her closer to Him and to people.

You have to learn to deal with both the good and the bad of life.

Actually, sometimes learning to deal with the good is harder. For instance, this past year, all of a sudden, when the book sold 15 million copies, it made me instantly very wealthy.

It also brought a lot of notoriety that I had never had to deal with before. I don’t think God gives you money or notoriety for your own ego or for you to live a life of ease.

So I began to ask God what He wanted me to do with this money, notoriety and influence. He gave me two different passages that helped me decide what to do, II Corinthians 9 and Psalm 72.

First, in spite of all the money coming in, we would not change our lifestyle one bit.. We made no major purchases.

Second, about midway through last year, I stopped taking a salary from the church.

Third, we set up foundations to fund an initiative we call The Peace Plan to plant churches, equip leaders, assist the poor, care for the sick, and educate the next generation.

Fourth, I added up all that the church had paid me in the 24 years since I started the church, and I gave it all back. It was liberating to be able to serve God for free.

We need to ask ourselves: Am I going to live for possessions? Popularity?

Am I going to be driven by pressures? Guilt? Bitterness? Materialism? Or am I going to be driven by God’s purposes (for my life)?

When I get up in the morning, I sit on the side of my bed and say, God, if I don’t get anything else done today, I want to know You more and love You better. God didn’t put me on earth just to fulfill a to-do list. He’s more interested in what I am than what I do.

That’s why we’re called human beings, not human doings.

Happy moments, PRAISE GOD.

Difficult moments, SEEK GOD.

Quiet moments, WORSHIP GOD.

Painful moments, TRUST GOD.

Every moment, THANK GOD..

Day 0: T day: Transplant day

This is Thursday, April 22, 2010.  TRANSPLANT DAY. This is a day I never wanted to happen and now a day full of hope for the rest of my life.

When I was first diagnosed with MDS February 2009, I was in stage 2, so I had to start chemo right away. The next alternative was stem cell transplant.  I never thought that would really happen.  I was sure the chemo would put me in remission and, like a dummy, counted out the typical treatment time schedule for the chemo ( 10 months to October ) and planned a celebratory cruise to the South Pacific in January 2010, 2 months after the supposed last treatment ( I added the extra months just in case I needed extra treatment!)  I should have known better.  It’s like saying ” I’ll never…”  When I say ‘it’ it always happens. But we scheduled it anyway.

Fast forward, here I am, a year later having a stem cell transplant and am blessed for this opportunity. It could only happen because of a 28 year old female donating the living gift of stem cells.  Wish I could hug her and thank her now.

What a whirlwind year.  The whole time I have felt optimistic and encouraged to be either put in remission by the original chemo ( which didn’t happen) or now to be cured.  I can’t even imagine any other option. That is why I am happy in this journey. I guess that is what “High Hopes” are.  kerplop!