Saturday, March 30, 2013

Tenth Trip to the NIH, +









March’s NIH lab results have gone missing, but they show that after 9 months on Ibrutinib, I’ve had a complete response to the drug in the blood.  All counts normal!  Bone marrow and lymph nodes, not so much.  But they are definitely improving, and in time, they may get there too.  I had a core needle biopsy of one of the lower right axillary nodes, and was instructed to stop taking Ibrutinib for a week, three days before and three days after the biopsy.  It was disconcerting to feel how quickly the nodes began to enlarge and to downright hurt before the week was up.  Relief came almost immediately once I got the go-ahead to start my favorite med again though.  Looks like Ibrutinib and I might be partners for life.
I appreciate my sister Julie driving up on Sunday from SLC to travel with me.  We had some shopping fun here on Monday before flying out on Tuesday the 12th.   We greatly enjoyed visiting with NIH friends, Lynn and Loren and Nancy and Gene in clinic, while we all waited to be called back for our consultations.  One received good news (treatment may not be needed for a very long time), one received bad news (she has to leave the trial for the second time due to another serious health problem), and as stated above, my results were good.  We waited and waited for almost 2 hours in the pharmacy to pick up my three-month supply of Ibrutinib, finally deciding to come back in the morning after the biopsy for them.  The shuttle schedule makes it necessary to be a little assertive sometimes.  Miss it and you could miss your flight, or you could be walking to dinner in an unfamiliar city in the dark.  The radiologist wrote in her orders that I was to be observed in the day hospital for 2 hours after the biopsy, but that would have made me miss the free NIH airport shuttle, having then to pay around $100 for a taxi.  No thanks.  The nurse made the necessary phone calls to secure the change in orders I needed.  But while they were pending, my pesky blood pressure started creeping up, jeopardizing my release.  I made myself think calm thoughts, and breathe slowly, deeply. Worked like a charm, it went back down to normal. Just in the nick of time I was free to leave! 
Julie and I flew from the Dulles airport to Orlando.  We were off to see the wizard, the wonderful wizards of Hogwarts!  Actually, it was our sister Jami and her family we went to visit for a few days, but Harry Potter’s hangout was on the list too.  So were the beach and the Orlando temple.  And we did it all, although the beach got short shrift with only a token 15-minute visit.  Guess this means we’ll have to make a return visit later on.  Jamie’s daughter Sarah accompanied us on our trip to Universal, and she’s a lot of fun.  She took being with three grandmas well in stride. 
Dan surprised me with a new microwave to replace our aging one while I was away, and helped me send out the Easter packages to the grandchildren when I got back.  Thanks to the love and consideration of many people, this trip was another success.                  

Monday, February 18, 2013

Choices and Voices, Part 1


It’s much easier to write about events, activities, hobbies, and accomplishments on a public blog than to share the things of the spirit.  The show-and-tell posts can teach and inspire readers to make great crafts and recipes, to sew, quilt, paint, decorate,, take professional-looking photos, and any number of other wonderful skills.  Writing about the things of the spirit feels like a little more of a risk to me.  But here goes anyway.

I guess I’ve travelled about 40 thousand miles this past year starting with one roundtrip to AZ, 9 to Washington DC, 2 to Utah, and 1 to Denver.  Forget about sky miles, it’s the blessings I’ve accrued that bring me to my knees in humility and gratitude.  I know I’m not the epitome of health, but I am undeniably stronger and healthier than I was when my travels began.  That’s physically healthier.  Even more marvelous to me is that I have also experienced an increase in spiritual nourishment and growth.  It feels like a miracle.  My heart wants to sing it out loud, but my spirit is telling me to keep my words simple and quiet, and to leave out all the exclamation marks I’d like to use..  Funny spirit.

 

I think I will be able to share more later.  But for now, I want to post the writings of someone else.   I am currently reading this amazing book, “Following the Light of Christ into His Presence” by John M. Pontius.  It is answering so many questions I’ve wondered about.  – How to be confident in my decisions; how to understand the actions of others; how to leave the plateau and make real and sustained progress... I borrowed the book on tape from the library, but some other kind person, C. Erickson, typed up the excerpt below in his Amazon review, and I believe it is life-changing!  Uh, I mean life-changing.   

Choices and Voices, Part 2

Excerpt from:  Following the Light of Christ into His Presence, by John Pontius (pages
36-40)
The Voices
It is one thing to say we must follow the voice of our conscience, which is the voice
of the Lord within us. It is quite another to be able to clearly distinguish it from
the other voices we hear. Toward that end, let us cast some light upon the other
voices. Elder James E. Faust had this to say about the voices we hear:
"But we hear other voices. Paul said, 'There are... so many kinds of voices in the
world...' (1 Cor. 14:10) that compete with the voice of the Spirit. Such is the situation
in the world." (Faust, "Voice of the Spirit," 7; ellipses in original.)
There are three main sources of voices in a healthy mind. The first is the voice
of your own mind. You hear yourself think. You talk with yourself, discuss things
with yourself, argue with yourself, berate, praise, and jabber with yourself all
day long. This voice is distinguishable because it is unsure, or in other words,
it questions things, and is seldom definite or decisive. It almost always asks questions.
"What was that? Who said that? Why did you say that? What does it mean? Do you suppose?
What would happen if? I wonder?" Even when it is emphatic, it leaves open the possibility
of change. "I'm definitely going to bed now--Okay?" "I'm going to town--if the car
will start." You will notice that this voice usually takes the personal case; "I
think I should fast today." The Holy Spirit would have said, "Fast today."
The second voice comes from Satan's realm. It is unlikely that we receive much attention
from the king of that kingdom personally. Rather, we deal with his minions, his messengers,
and tempters. These beings have been in the business of tempting mankind as long
as the earth has existed, perhaps longer. They are undoubtedly very skilled and highly
motivated. Each have probably tempted thousands of people like ourselves. They have
spent thousands of years of intimate contact with mortals. They have much more experience
with tempting mortals to sin than we could possibly have in resisting it. They know
the subtleties and tricks necessary to entice and trick us into failing. They undoubtedly
specialize in their work, meaning that certain of them specialize in anger, marital
infidelity, family disharmony, murder, drugs, illness, depression, hate, or a million
other maladies, sins, and vices. Once successful, they linger year after year with
those they afflict.
When we hear a voice from this source, it will be cleverly disguised and enticing.
It will appeal to the natural, carnal, sensual, and devilish side of us. There is
real intelligence in the message, and malice aforethought. They plan and plot against
us, and their messages are carefully chosen.
"The adversary tries to smother this voice [of the Holy Spirit] with a multitude
of loud, persistent, persuasive, and appealing voices: murmuring voices, conjuring
up perceived injustices; whining voices, abhorring challenge and work; seductive
voices, offering sensual enticements; soothing voices, lulling us into carnal security;
intellectual voices, professing sophistication and superiority; proud voices, relying
on the arm of the flesh; flattering voices, puffing us up with pride; cynical voices,
destroying hope; entertaining voices, promoting pleasure seeking; commercial voices,
tempting us to 'spend money for that which is of no worth' and our 'labor for that
which cannot satisfy...' (2 Nephi 9:51), and delirious voices, spawning the desire
for a 'high'... [which is] death-defying experiences for nothing more than a thrill."
(Faust, "Voice of the Spirit," 7.)
A prompting from this source will nearly always be stated as an absolute. "Don't
let him get away with that. I'm too tired to pray. You deserve better. Pay him back.
No one will notice. It should be yours anyway--just take it. She's your wife--not
your mother. Football only happens once a year, the church can get along without
you for one Sunday. She wants you--it's only natural. He loves you more than your
husband, how can you not love him back?"
These promptings will always lead us away from the truth. They prompt us to disobey,
not to pray, to abandon church assignments and family responsibilities, to commit
sin and walk in forbidden paths. They do not limit themselves to voices alone. They
can draw from the trash stores in our minds to dredge up memories which will either
lure us away from purity and virtue, or keep our minds harrowed up with vivid memories
of our sins--even after we have repented of them.
The evil ones cannot read our minds or hear our silent prayers. It seems they hear
what the Holy Spirit says to us, for they respond immediately. When the Holy Spirit
prompts, "Say your prayer," you immediately hear, "Don't say prayers, you're too
tired."
"Yea, I tell thee, that thou mayest know that there is none else save God that knowest
thy thoughts and the intents of thy heart." (D&C 6:16.)
They cannot force us to do anything, unless we yield to them, and value our inability
to see them. They can tell when a temptation excites or repels us. They are most
successful in half-light, half-truths, and half-hearted people. Their tools are limited,
but they use what they have with great effect. They have destroyed millions of souls,
and you are simply the next on their list. They are confident, efficient, successful,
and they hate us with unimaginable intensity. From their perspective, they are engaged
in an all-out war against us. Our perspective barely includes a realization they
exist, and certainly no thought of an all-out war against us. It is no wonder they
win so frequently. Yielding to the enticings of Satan's minions will have the opposite
effect of yielding to the enticings of the Holy Spirit. Any time we receive a prompting
to do wrong, or disobey, it comes from Satan's realm.
One of their weaknesses is that they can rarely voice just one lie. While the Holy
Spirit generally prompts us only once, the tempters often voice many objections to
each prompting. The Holy Spirit may prompt us to call everyone to family prayers.
Thereafter, the evil ones suggest many reasons why we should not obey. "Everyone
is tired. They will complain. You don't feel like it. The wife is already in bed.
It's late. It's useless. You can do it tomorrow." This is actually one of the ways
we may discern the voices. The Holy Spirit whispers truth, and thereafter, the opposition
tirades against it.
The third source of information in our minds is the voice of the Lord through the
Holy Spirit. It begins as the conscience, the light of Christ, and is a free gift.
In its most rudimentary stages it is a quiet urging to choose right, to abandon wrong
choices, and to seek greater truth. This voice grows in content and quality as one
heeds it direction until it becomes a significant guide, and measure of truth. Following
baptism and the bestowal of the gift of the Holy Ghost, the Holy Spirit assumes greater
power and authority, and though remaining still a still small voice it becomes a
comfort, guide, and source of great strength as we learn to obey it.
This voice always entices to do good, to believe, serve, pray, and repent. It nearly
always prompts contrary to where you were headed. If you were lying under the car
Sunday morning, it would tell you to go to church. If you were already on your way
to church, it would prompt nothing, but would give a feeling of comfort and satisfaction.
The voice of the conscience is easy to recognize, because it is the only one of the
three which prompts to do good. These promptings come as absolute statements. The
Holy Spirit would say, "Fast today." Your mind would have said, "I wonder if I should
fast today," or "Perhaps I should fast." Any time you have a prompting to do good,
it has come from God.
We have been talking a lot about promptings. Perhaps even the term needs clarification.
A prompting is information which originates outside one's mind. The Holy Spirit prompts
to do good, the devil prompts to do evil. Our minds consider and analyze the promptings,
and make decisions concerning them. These promptings all appear, and sound, exactly
like our own thoughts. The only way to differentiate between them is the way we have
already discussed. Good comes from God. Evil comes from the adversary. Questions
and analysis come from within. It really is just that simple.

Monday, February 4, 2013

Of One Heart


 

What a wonderful family is the family of Lonnie and Julie Baird.  Such unity, strength,, kindness, and love have impressed me deeply..  Two weeks ago, Lonnie passed through the veil into immortality.  Families are of God, and they are meant to be together forever.  I believe it, I feel it, I know it to be true!  Nurturing these special, potentially eternal relationships take a lot of work, but you make it look easier than it is, and mostly fun, too! I love and appreciate each of you.  Especially you, Miss Julie B.  You have a heart like no other.  May the Comforter assist in putting it back together again.    

Thursday, January 24, 2013

Denver and More

Greg and Shauna gifted us with buddy passes to Denver and back earlier this month.


Lunch at Crepes n crepes

Tasting flavor infused balsamic vinegars and olive oil.
McKenna

McKay



 Thank you for a wonderful weekend, Denver Washburns.  We enjoyed taking the People Code color test, and spending time with Katy, Alyssa, Josalyn, and Levi, the twins, and the rest of the gang. And now Brianna is visiting us here with her cute cute nearly three month old baby boy Jayden.






Friday, December 21, 2012

Ninth Trip to the NIH



 











 Signs of Christmas at the NIH! It’s such a happy place.  But we were reminded that there’s also heartbreak there.  We heard code blue calls to the pediatric unit, and silently prayed for the child who was fighting for his life, and for his parents, too. 


For me, it was all good news and good fun.  On Thursday, I had the best and easiest bone marrow biopsy I have ever had.  I don’t know what Dr. F. does differently, but I like it.  Very little pain at all.  (Look at bottom of page for BMB results).  Next I drank about 33 ounces of nasty oral contrast for a CT scan of neck, chest, abdomen, and pelvis.  Lymph nodes still enlarged, but decreased since Augusts’ scan. Macey joined Colin and me for a nice lunch in the cafeteria together, then I relaxed at the hotel, alternately napping and reading an Agatha Christie novel, while they took the Metro to the National Mall for a tour of the Holocaust museum. 


In clinic on Friday, I chatted with new CLL friends Joan, Jean and Jane, as we waited to be called back for our appointments with the CLL team.  A few of my ever-improving lab results follow:


WBC: 10.56 (normal 4.0-10.04)


RBC: 4.67 (normal 3.93-5.22)


HGB: 12.4 (normal 11.2-15.7)


HCT: 39 (normal 34-45)


ANC: 3.28 (normal 2-6)


ALC: 7.0 (normal 1-4)


Platelets: 227K (normal 173K-369K)


LDH: 143 (normal 113-226)

Last spring it was up to 2400!  Hap hap happy about all my numbers!  We picked up a 3-month supply of Ibrutinib at the pharmacy downstairs and headed back to the hotel to collect Macey, grab a quick Subway lunch, and walk to the theater to see The Hobbit.  I read it when I was 19 years old, so I reread it the weekend before going to Bethesda to refresh my memory.  We all liked it a lot, although I did fall asleep a few times during it as is typical of me.  Macey and I noticed the temperature had dropped while we were inside the theater, so we hurried back to the hotel and put on an extra layer of clothing, then caught a taxi to the Washington DC temple for the Festival of Lights.  A choir of young black kids, ages 5-18, from Baltimore delighted an audience of several hundred with their soulful renditions of Christmas carols.  On returning to Bethesda, we had a wonderful Italian feast at Mama Lucia’s.  Their chicken pesto ravioli was fantastico!  














On Saturday, Colin and Macey made another trip to the National Mall to see the sights, and I finished Christie’s Death at the Vicarage.  Not trying to brag or anything, but Colin was a wonderful escort and companion.  A lady in the Marriot even noticed and told him he was a good son.  Macey said she had a blast, which is a good thing because the trip was a combo 21st birthday/Christmas gift for her.  Dan went back to work on the 10th, just two days before we left, and I’m so glad that he did well in my absence.  Not as well as when I’m home of course, but well enough.  He singlehandedly got our fragrant Christmas tree up and decorated, and now we’re eagerly awaiting Shane’s short holiday visit.  Merry Christmas, all! 



Bone marrow biopsy results:

Remember we look at two major things on the bone marrow biopsy. The first is total cellularity which is the total components of your bone marrow (white blood cells, red blood cells, platelets, and all precursor cells). For your age it should be in the 40-50% range. Prior to treatment you were 95%, at two months you were80%, and now you are 65%. It's still high because it looks like your normal cells are starting to come back. The second marker we look at is called CD79a and this specifically labels the CLL cells. Prior to treatment you were 95%, at two months you were 80%, and now you are 35%. You have had a significant reduction in the CLL cells in your bone marrow. I did not expect that the CLL would be completely gone, but looks like a good amount has been reduced. We retested cytogenetics so we will also see what happens to the 17p. 




Thursday, November 29, 2012

Eighth Trip to the NIH


I’d only been home one week from Oct.’s visit to the NIH, when pain assailed me once again.  It started small, but became great …and dreadful.  Very different from the joint pain I’d experienced early in the trial, I didn’t realize it was from the same source.  It began in the right shoulder, then moved to the neck, from there to the left shoulder, back and forth between all three, then encompassed all three simultaneously, growing ever more intense day by day.  By the time Ethan, our PA son, came for a visit, I was ready to heed his advice to call the NIH docs.  I emailed Dr. F. on Sunday, the 11th of Nov., who promptly called and gave me permission to start a course of Prednisone.  That night I couldn’t even lie down to sleep.  I spent a miserable day, night, and day, sitting upright to try to keep my right side from hurting too badly.  This stubborn pain was spreading, I was suffering from shortness of breath, and acid reflux from all the pain meds I was gulping down.  I asked my good home teacher for a priesthood blessing to help with the pain and with my upcoming travel concerns.  Kirt came over with Chris Coltrin on Tuesday evening, and I began feeling improvement by Wednesday morning.  Thursday,  my friend Karen flew with me to Bethesda for my appointment the next day.
From the talk on gratitude I gave last Sunday, here’s what happened when we landed at Dulles We’re always pressed for time when we land, and have to hustle to catch the free shuttle to the NIH from the airport.  I’d been having some significant side effects lately and didn’t feel able to zip around as fast as I thought I’d need to, so I requested to be met with a wheel chair for more rapid transport.  There was a little mix-up about it which delayed us a few minutes, but all was straightened out and we were on our way, but not quite quickly enough to my mind.  I explained our dilemma to the lady who was leisurely propelling the wheel chair through the terminal, that we had a shuttle to catch or we’d have to wait 2 hours for the next one.  No change in speed.  Next, I sat up, straight and tall in the saddle, and reluctantly said, “Faster, faster!”  No change.  Then I ask Karen if she would go ahead and call the NIH and let them know we were in the airport, and have them tell the driver to wait for us.  Good, they said they’d do it.  Another couple of minutes fly by as we trundle slowly along, and then I ask,  “What time is it?”   Followed in another minute or two by  “How much farther??  And finally I revert to the ever-popular childhood query and ask  “Are we there yet?”  A few bars of “Here comes the oxcart, oh, how slow!” play in my mind, and then   I get the idea to rummage around in my purse hoping that the pusher lady will notice and realize that a tip will be forthcoming when we arrive.  I decide on $10 if we make the shuttle on time, but only $5 if we don’t, and that’s mostly for putting up with my, um, encouragement.  Good news, we made it!  We had a little gratitude fest right then and there.  Karen got in on it too, because she even handed the bus driver a tip for waiting those extra few minutes for us.”

I was able to get my labs drawn that afternoon upon arrival at the NIH, which meant results would be available by 9 o’clock clinic Time, and we wouldn’t have to hurry as much the next morning.  Labs looked good with WBC down to 19K; ALC down to 14.8; platelets up at 365K; and HGB slipping a tad to 11.2.  That good old C-reactive protein reading which had been normal last month told the story of my pain from the inflammatory response to the Ibrutinib, it was way way up to 69.8! Everything went perfectly, and I thank Karen for traveling with me!  Next visit is in two weeks.  Colin and Macey will be with me for the last trip of the year, which will include a CT scan, core needle biopsy of a lymph node, and a bone marrow biopsy.  Boo!