Saturday, June 27, 2009

Amazing Day at UCLA

We left early hoping to beat the traffic surrounding the death of Michael Jackson, and ended up taking extra time ourselves trying to get something to eat on the way. We made great time as traffic wasn't so bad. What we found out is that the news organizations seem to be blowing the picture of reality out of proportion. Traffic was only mildly heavier, but everything was moving and we found out that the L.A. Film Festival was in town which accounts for that. Not to mention summer vacationers abound. We saw no shrines at UCLA and the crowds that had gathered the day before were all gone. I suppose a few people moved over to the Coroner's Office and his home, but watching the news, it appeared that the world had stopped and all were mourning in the streets. Not so - life was actually quite better than normal down there.

In fact, the doctor's office was empty when we arrived, and the phlebotomist took me right in (before my 1 PM appointment!) I went back to the waiting room and in just a few minutes I was called to see the doctor. My appointment to see Dr. Schiller wasn't supposed to be until 2 PM so imagine my surprise! Usually the place is packed and they are running at least an hour behind. One time I had to wait 6 hours to see the doctor!

I shared my symptoms of late - burning tongue, sore mouth, pain and tightness in my throat when I swallow food over the left side, fatigue, muscle stiffness and joint pain, and a bit of a rash. He confirmed that yes, they are all graft-vs.-host disease related. I was bummed to have graft-vs-host of the tongue...that means the immune system is attacking it and destroying the tissue with a loss of taste buds - so that burns where that is located, all around the tip and sides. The good news again is that this mild form of GVHD has an anti-leukemic effect.

When they shared what my CBC (complete blood count) was I thought they must have someone else's record! My hemoglobin is 12.6 (perfectly normal!) and my platelets are 125,000 (150,000 is normal). The platelets had dipped to 87,000 just last week because of my GVHD.

We were all done by 2 PM so we headed over to REI in Santa Monica so I could get a few sun block items - a lightweight, long-sleeved SPF shirt, pair of lightweight SPF pants, an SPF hat with flaps that meet under my chin, a pair of sun gloves, and some 50 SPF sunblock. I'm hoping I'll be able to be out more without fear of burning and increased GVHD symptoms. Lately, since I've been more active, I've been getting more sun (just driving and standing outside 10 min. here and there), but my sunscreen was allowing too much sun in for my sensitive skin and consequently I've been having more GVHD. I'd like to be able to take the kids to the beach sometime in my sun tent, but was concerned about the reflective UV. Now with head to toe sun block stuff I think I might be able to try an hour.

After REI, I was pretty exhausted and my hip hurt, so we couldn't do any more walking adventures even though I desired to walk the 3rd Street Promenade, hit the newsstand there, go to the Santa Monica Pier and ride the great ferris wheel. Instead, we drove the scenic way home via PCH (Route 1) through Malibu and into Oxnard. On the way through Malibu I decided to see if I could find my great uncle Bill Hoppe's house - a place I'd spent many summers during childhood roaming their property, playing at the creek, and spending time next door at the neighbors' wonderful home, a producer/cameraman who had a daughter my age. We used to play hide and seek in all the amazing cubbies and secret passages in her house, enjoyed playing on the hammock, and riding in the tire swing that hung from a giant oak tree. Sometimes we walked down to Zuma Beach and picked anise all along the way...ahhh the smells of that! At night it was fun to listen to the coyotes having their howling parties. So, just like the other childhood cravings, I just wanted to go back and see. It had been MANY years and my Aunt Rosemary died of breast cancer some years ago, but I wanted to show my kids where I used to play for a couple weeks each summer as a child. My great uncle Bill and his son Craig (2nd cousin once removed or something like that) were both home and were willing to welcome us outside. I toured the back of the property where I meandered the creek and headed up the hill to the neighbors. Some things had changed, some remained the same. My neighbor friend no longer lives there, but the kids were excited to learn that the new owner is the producer of the movie Bolt. They had landscaped their yard and put in an iron gate, so the old oak tree no longer had it's tire swing, bummer!

We only stayed 15-20 min. visiting, then headed home. All that activity and sun caused my muscle stiffness and pain to increase so that by the time I got home, had a bite to eat and got a bath to try to lessen the onset, it had turned into a migraine. This morning my migraine and nausea from it are gone, but I still have the stiffness which leads to it so I need to be careful not to do too much today!

This concludes my periodic update, reporting when there is news and not every day! Life is getting busier now that I'm more active so I hope you understand. Also, I enjoy talking with you when I see you! So many people read this blog and don't feel a need to speak to me in person since they know everything that is going on in my life which is a strange by-product of blogging. Another strange thing happens when strangers come up to me who are not readers of the blog, but have heard about me from a mutual friend. I know they are not on the blog when they ask how I'm doing, ha! The funny part is that I sound so ridiculous saying, "Well, thank you. Um, you can read my blog to find out if you'd like, aren't you a subscriber yet?" What has gotten into me? Then I start telling them how I am, and because I'm not practiced in speaking about my condition to new people, I end up saying way too much - yes, the recipient's eyes start glazing over! I have forgotten how to have a normal conversation - the old fashioned way with a simple "I'm fine thank you, and you?"

P.S. In case I don't write sooner, I'll be celebrating my 38th-birthday on July 13! Birthdays always mean more to me after a near-death experience :)

Hebrews 10:25

Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another—and all the more as you see the Day approaching.

Monday, June 22, 2009

No More Driving Mrs. Daisy, I Mean English

I did it! I drove the car for the first time since December '08! The kids and I were excited about the adventure and the fact that I had good energy this morning. I made us all chicken salad sandwhiches with our leftover chicken, and put together a lunch for Mike. I had planned to surprise him by bringing him lunch to work after dropping the guys off at the golf course which is halfway between the house and his workplace. But as we were leaving Mike pulled up ready to give the boys a ride to their golf class. Adam ran out and told him to "go back to work! Mom's driving us!" I think Adam was trying to protect mom from becoming disappointed which I was because Mike foiled our plans! Instead I sent them on with him so he could go back to work and I could get some more things done during that time.

I did drive though by picking them up at 3 pm even though I was more fatigued than I had been earlier. No problem though - I didn't feel tired driving. Since I was out and about for the first time and since Mike's Drum Shop was having a Zildjian Cymbals show and sale with giveaways and contests from 3-8 pm, we headed to downtown to check it out. I got Adam's birthday gift without him watching and together we picked out an early b-day present of a needed crash cymbal for 50% off - awesome deal! We were one of the first ones there, but it doesn't take but one other person wailing away on those cymbals to send my nerves into a frizzy. It was so loud in the cymbal room, I had to get out of there quickly! After the drive home, I was pretty drained of my remaining energy. So we just put on our La Clase Divertida DVD lesson and let the kids learn los colores.

Now that I am making more progress every week and am much more stable, I am feeling a tug to slow down the blog to bi-weekly updates for you. I don't want you to get bored with the daily activities of our family life when the ups and downs are becoming more modulated. I go to UCLA every 2 weeks right now and will update you when there is anything interesting or specific prayer requests are needed. After that I'll go to monthly reports. I just don't want to cut you diehards off cold-turkey!

Ecclesiastes 3: 1-8

There is a time for everything,
and a season for every activity under heaven:

a time to be born and a time to die,
a time to plant and a time to uproot,

a time to kill and a time to heal,
a time to tear down and a time to build,

a time to weep and a time to laugh,
a time to mourn and a time to dance,

a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

a time to search and a time to give up,
a time to keep and a time to throw away,

a time to tear and a time to mend,
a time to be silent and a time to speak,

a time to love and a time to hate,
a time for war and a time for peace.

Happy Father's Day

Krista's ups and downs had her down this morning. The "traditional" camping foods didn't agree with her stomach and the excitement of the boys night camping put her over the edge into a migraine last night that continued well into the morning. When the boys and I got home from church, I learned that she had thrown up everything back to last night's dinner -- and then she began to feel better. She thinks it may have been the potato chips that started the stomach shutdown, since those were the first things she consumed. The strange thing is that the antidote to her nauseous feelings is nachos. As she said, "'nachos' is Spanish for 'not feeling sick!'"

For Father's Day, Adam gave me his Cold Stone coupon so I could have a "cool summer". Trevor made me some nice cards. And Krista ordered me a portable gas grill that has been getting rave reviews. It should be here in time for our upcoming date night at the end of the month where we'll be seeing the Les Miserables at Solvang's Theaterfest. Thanks guys for a special day!

The second half of the day, we got to babysit Osage, the Weitzel's German Shepherd. It was Heather's 40th birthday (Happy Birthday, Heather!), and they didn't want to leave the dog alone all day. The boys have such a good time with her, and she is so responsive to them, too. Having her over is helping us to know more of what we want in a dog as well.

Krista was feeling better in the evening. Pray that she'll be all better tomorrow and that she might have a really strong week.

On my bed I remember You;
I think of You through the watches of the night.
Because You are my help,
I sing in the shadow of Your wings.
My soul clings to You;
Your right hand upholds me.
(Psalm 63:6-8)

Saturday, June 20, 2009

Father's Day Eve

Last night I stayed up WAY too late just because my mind would not stop. I rested most of today in that state of almost falling asleep, but never quite taking a nap -- even until 4:00 pm! Finally, I got my shower and cleaned up before 2 of our kids' friends arrived at 5 p.m. for a backyard campout.

I made them typical camping fare of hotdogs, baked beans, salad and potato chips, topping it off with gourmet s'mores -- graham cracker, toasted marshmallow and Nutella (the secret ingredient). Thinking I'd join in the fun, I ate the same meal and now have a headache to go with it. Could be all the noise too. I decided to pull out something that we've not taken out for a couple years -- Speed Stacking. We had a little workshop to show the kids how to do it and they had a great time learning their new skill. Beginners slam the cups a little too hard so it was a little loud for a while. But they got the hang of it by the end. As delighted and enthusiastic as they were with this activity, I can see a cup stacking club being formed in the future!

Now the boys are in the tent and I'm glad they are having so much fun, but golly how to unplug them before long!? Being a girl, and an only child at that, I never knew the sound of's quite noisy! Pillow fighting, someone might get hurt, yelling into walkie talkies because all you can hear is static...I never knew any of that, hence the headache. Boys, glorious noise!

It's Father's Day and you know what THAT means! Another holiday for me to fall behind. The gift I wanted to get Mike for being the Best Father of the Year was just way too expensive for us right now, but then I found an alternative of the same idea that was only a small fraction of the cost. Unfortunately, I didn't find that option until Friday so he'll be receiving his gift late. Maybe we'll celebrate Father's Day all month since he deserves it so much.

Hope you have a relaxing and enjoyable day tomorrow with the fathers in your life.

Ephesians 1:15-21

For this reason, ever since I heard about your faith in the Lord Jesus and your love for all the saints, I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe. That power is like the working of his mighty strength, which he exerted in Christ when he raised him from the dead and seated him at his right hand in the heavenly realms, far above all rule and authority, power and dominion, and every title that can be given, not only in the present age but also in the one to come.

Friday, June 19, 2009

Thank God for Everyday

I was going to thank God it's Friday, but that's so cliche and when I stopped to think about it, I can truly say I thank God for everyday. As I suspected, my day started well with an early wake up, ready to go, no pain, good energy to do clutter pickup before my friend came over with her 2-year-old Matthew and her 9-month old German Shepherd, Osage.

Osage was GREAT! I've never met a brighter and sweeter dog than Osage, pronounced 0-sage or o-wise-one. So if for some reason Heather, you can't keep Osage, please put us on top of your list as potential caregiver. As it is, Heather said we could babysit anytime she has to be out of the house for 4-6 hours instead of keeping her in her kennel that long. The dog loved Adam and Trevor, and the kids LOVED her. I think I've heard 4 or 5 times, "When can Osage come back?" or "When are we going to babysit Osage next?" We got to keep Osage for a couple hours after Heather left at lunch to take her daughter out for her birthday. It was so fun to pretend we had a dog and she was the hit of the neighborhood because of how well she listened and how calm she was for only 9-months-old.

I was pretty tired at the end of the day -- no more than usual -- so I had Mike bring home a pizza before the kids' last night at VBS at church. We took them ourselves this evening (every nightthis week Katherine Marton drove them to VBS, while the Steffen Family took them home.) Being the last night, it was with great pleasure that I was able to see the final worship time, drama skit and fabulous video of the children's participation that took place all week. Thank you Katherine and Alyssa & Cory for making the nightly VBS-committment possible for our children.

Thank you readers for all your prayers! My graft-vs-host disease has improved greatly over the last 2 days--the medication took quick effect. You can direct your prayers toward Mike's behalf since it's Father's Day this weekend (and what a father he is!) Pray that he'll have a very special weekend and feel refreshed and encouraged.

Psalm 66:18-20

If I had cherished sin in my heart,
the Lord would not have listened;

but God has surely listened
and heard my voice in prayer.

Praise be to God,
who has not rejected my prayer
or withheld his love from me!

Thursday: Flip-Flops and Important Update on Meals

This post was done early, 6:45 pm on Thursday, and for some reason the FeedBurner didn't send out to the subscribers - at least I didn't receive a copy in my inbox. So, I'm posting it again to see if it will now deliver to you...

Today when I woke up late at 8 a.m., I felt horrible...achy, swollen inside and out, sharp joint pain in my ankle and knee. It seems like each day it flip flops, wake up early good, wake up late bad, and by mid-day it turns the opposite direction. By 11:00 a.m. I was feeling much more energetic, and the inflammation and pain was gone, while yesterday by lunchtime I was flaring up with the GVHD and feeling exhausted for the rest of the day!

I think that fares well for me tomorrow a.m. then, if we can trust the trend. Having my energy in the morning will be great because my friend Heather is bringing over her adolescent German Shepherd after 9 a.m. Word is out that I am a serious Dog Whisperer-addict, willing to pass on all I've learned from Cesar Millan's techniques in dog psychology to anyone who will listen to me!

So after a late start, we were off to see Dr. Wolliver. I noticed that I was able to move much faster and on 2 feet this time when went to the Cancer Center. Just a few weeks ago, I was only able to be in the wheelchair to go that far, and I was very blah and puffy. Today, the doctor remarked that it was the most he's seen me smile in a while. He said that even though I have chronic GVHD, I'm able to manage it on very low doses of immuno-suppressants which is great. He's seen much worse cases. In fact he mentioned that one patient of his, back in the late 1990's who had a transplant for his leukemia, stopped taking his meds when he felt better, claiming he didn't need them anymore even though his doctors warned him. The doctor sadly reported, "the last 12 years for this guy has been hell." I guess the GVHD attacked with a vengeance and it's been hard to manage. I proudly admitted to being a very obedient patient, no stupidity here! I might complain a little, but I'll gladly take my medicine and listen to my doctors...seeing the progress I'm making now makes me trust them all the more. It doesn't seem as random as it once did to me. Funny that I would think these top-notch doctors are guessing at what to do or just treating everyone the same...they know what works and what doesn't. You just get a little delirious and/or paranoid when you suffer intensely for long periods. What people put up with to take care of me! Sorry people! You know who you are :)

Dr. Wolliver also reported to me that they are working on ways to get the GVLD-effect without the GVHD. GVLD is graft-vs-leukemia-disease which is no disease at all, but an efficient way of staying in long-term remission. I didn't realize how important it is to get some GVHD, fairly mild like I have it (nonetheless annoying). He said that there is a much higher leukemia relapse rate in folks who never have GVHD. Just goes to show that God knows what He's doing.

Mike was able to take me to Fairview Gardens for our CSA share pick up, and what a beautiful day. It's so fulfilling to pick your very own local, just-picked, organic veggies and fruit...the sights, the smells, the sounds of the giggles from children climbing the old Mulberry tree while you pick. If you are local to Goleta or Santa Barbara, get on over to Fairview Gardens and sign up for the summer harvest...there are still spots remaining and they will prorate the season for you!

After the farm, it was off to Staples. I stayed in the car, but the best part was running into Aaron Swaney and getting to chat for a while! Love the Swaneys and all their extended family and hope to get to spend more time with them in the future. They are such a great example of godly Christians who are "in the world, but are not of the world."

I've got way too much false energy from this steroid, even though it's only at 10 mg! I'm sensitive to these things. I say false energy because it has me going a mile a minute, non-stop talking, but I also feel slightly exhausted too. So I think I have all this energy, but when I go to do something I'm feeling too tired - a strange sensation which doesn't help my tendency to be over-ambitious!

Oh, one more thing I need to give those of you in our homeschool community a heads-up on! If you were bringing us meals, or are scheduled to, please redirect your love and energy to Stacy and Fred Zamora. Contact Linda Berkley through the Homesteader email list to sign up for a date. We are doing much better now that I'm more mobile and able to help plan ahead better. And thank you all for your amazing support! We couldn't have done this without you!

2 Corinthians 9:11-13

You will be made rich in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.

This service that you perform is not only supplying the needs of God's people but is also overflowing in many expressions of thanks to God. Because of the service by which you have proved yourselves, men will praise God for the obedience that accompanies your confession of the gospel of Christ, and for your generosity in sharing with them and with everyone else.

Wednesday, June 17, 2009

I've Got Title Block! Blank! Nothing! Nada!

I woke up early this morning at 6:15 and got a shower which left me with some quiet time to just sit and pray before the kids woke up. I felt better this morning and had more energy than usual, even enjoying my first cup of coffee since December. Darlee, that Starbuck's Holiday Blend you got me still tastes great after all this time (stored in the freezer)...thanks!

By lunchtime, my chronic GVHD started to flare up with extreme fatigue and itchy dry eyes and chin. The doctor emailed me right back this morning instructing me to go back up to 50 mg of cyclosporine and double my prednisone to 10 mg, just as I suspected. The prednisone is to get rid of the rash quickly and the cyclosporine is to suppress the immune system to get the GVHD under control. I need to report back in 2 days to let him know if it improves. And Thursday I get to see Dr. Wolliver, my local oncologist for a mid-month check-up.

The kids did an outstanding job today with great attitudes. Adam tackled his checklist like a champ and even spent some personal time with God reading his Bible on his bed without being "told," while Trevor was able to turn himself around quickly from his desire to argue/disagree/or disobey. A sweet change from yesterday. He also did his checklist without prompting, yay! Someday they will read this blog, so I'm tooting their horn from time to time because they are such great kids after all.

Speaking of my kids, Trevor is a funny one. Today I was talking about dog breeds and he asked me, "How do you know?" which, at first thought, sounded quite rude. I responded, "What do you mean? Do you believe me? Trevor, do you trust me? Do you like your Mama?" (Ok, I was really thinking the kid did not respect me for a moment there - like I must not know a thing.) He says he believes me, trusts me and likes me, but he just wants to know how I know. He's being literal here...he really wants to know how I come into this fascinating information, and where can he learn that? He is a curious little bug at 7 1/2 years old!

I hope you all are growing stronger in your walk with the Lord and not too busy to spend some quiet time reflecting on all He's done in your life. If you don't have a relationship with the Lord or you are living for yourself, don't waste another day! Turn to Jesus, and meet the One who loves you so much that He was willing to die on a cross for your sin, the sin you inherited from your forefathers all the way back to Adam and Eve! Life is too short not to get to know your Creator before you meet Him face-to-face. And, getting to know Him now will make all the difference when the time comes for you to "really" need Him, I promise you. The hurried, rushed life so many of us lead will never satisfy the longings in your heart. Turn to the Lord Jesus because only He can meet that peace and true joy which you seek.

Psalm 119:36-38

Turn my heart toward your statutes
and not toward selfish gain.

Turn my eyes away from worthless things;
preserve my life according to your word.

Fulfill your promise to your servant,
so that you may be feared.

Tuesday, June 16, 2009

Chronic GVHD

Since I was weaned down on the Cyclosporine (immuno-suppressive medication) a week ago, I noticed little symptoms creeping up...until now they were so small that they weren't bothersome. But, all of a sudden, I developed a red, raised, terribly itchy rash and the texture of my skin changed to be VERY dry, mottled and a little wrinkly. The rash has rapidly spread over my entire face, with it worse on my eyes and chin. My scalp and ears are affected too.

After looking up Graft-vs-Host Disease (GVHD) online, I learned that some of the other symptoms I've had this week are part of chronic GVHD. I've been having muscle pain and imobility which is called fascitis. I've noticed fissures at the corner of my mouth and severely chapped lips, dry mouth and edema this morning. I also had detected changes in my nails that are also attributed to chronic GVHD. There is also GI involvement where I just don't feel right, less appetite and sometimes nausea.

I'll probably have to up my dose again on the cyclosporine and maybe the steroid until the rash clears up. My doctor told me this morning to wait a day or two to see if it spreads, but I cannot wait and will go back up on the cyclosporine tonight.

I had acute GVHD after the transplant which was no fun at all. When it occurs like this, after the 100 day mark, it's called chronic GVHD and can last up to three years. The good news is that a mild case of GVHD is good for transplant patients, keeping them in long-term remission. The activated immune system will gobble up any potential cancer cells that might cause a relapse in someone who doesn't get GVHD. That's the layman's explanation. I'm too tired to go technical on you.

Please pray for the GVHD to be under control and not to spread. I am especially uncomfortable from the itchy rash on my eyelids and from the fascitis (muscle pain and stiffness).

Thank you for your continued support!

Of all the characters in the Bible, I've often felt I could most relate to Job...not to feel sorry for me, as I find great hope in Job and these trials just increase my faith all the more as I seek Him.

Job 19:25-27

I know that my Redeemer lives,
and that in the end he will stand upon the earth.

And after my skin has been destroyed,
yet in my flesh I will see God;

I myself will see him
with my own eyes—I, and not another.
How my heart yearns within me!

Monday, June 15, 2009

When in Battle, Eat Cheese

I went to bed late last night, but that can't account for the amount of tiredness I had today! I woke up around 7:30 a.m. and by 8:45 a.m. had a bowl of cereal for breakfast. By 9:30 a.m. I was out like a light until almost 12 p.m.! It was like an extreme sleepiness that I couldn't wake myself up from. I managed to meander to the kitchen to make us a little lunch.

After that things picked up and the kids and I did our Spanish lesson and daily poetry memorization, which they love. We're having a great time this summer playing catch up and doing some new things that we never got a chance to do because of my transplant.

They went to Vacation Bible School tonight at our church, which gave Mike and I a chance (no matter how tired I was) to attend a parent meeting at the Artios Academy. Those integrative art/music/drama/history classes won't begin until September, but we're really looking forward to it! The kids are going to also join the theater club because they were so impressed with the productions of Robin Hood and the Princess and the Pea last spring that they wanted to be a part of it this Fall. Good job, Viviane!

Mike's macaroni and cheese (actually Ina Garten's) turned out very good. And faithful Jenny Sutton brought us a delicious looking pasta dish that had chicken with mozzarella on top and a tomato sauce, plus a salad and homemade tapioca pudding and fresh whipped cream. We're saving that for tomorrow!

I told you I'm obsessed with cheese, and I confess to daily homemade nachos. Of course, you all know, through reading my blog, the daily battles I have and do face. It was only appropo that I run across this handy verse to justify eating all this cheese. Now see the parrallel of being in battle and the command to bring them cheese. (And remember I'm tired! Have mercy on me, I know this is shamefully out of context, but I thought it was funny that they actually took along ten cheeses, imagine!)

1 Samuel 17:17-19

Now Jesse said to his son David, "Take this ephah of roasted grain and these ten loaves of bread for your brothers and hurry to their camp. Take along these ten cheeses to the commander of their unit. See how your brothers are and bring back some assurance from them. They are with Saul and all the men of Israel in the Valley of Elah, fighting against the Philistines."

Sunday, June 14, 2009

Thank You for Praying

Last night I was able to sleep somehow, despite the agonizing pain in my head and neck. So thank you for your prayers because I had a much better day today. This morning I was a little hungover from the medication I had to take last night to make it through, but once that passed, I could tell I was getting better and wouldn't face that again today.

I wasn't able to attend church with my family, but look forward to hearing the message which was on facing life's storms. I heard it was very good. I am also excited that Adam is taking initiative to play drums with the kid's praise band. He has been playing drums for a year and a half or more, but has never played in a band. He's quite good with reading music and playing what he's learned, so this kind of playing freestyle is going to be a good next challenge for him. The band is made up of kids who seem really helpful in working with each other too so it's a perfect fit for him. Initially, he's going to play a hand drum to get used to the freestyle nature of playing in a band. He'll also act as back-up drummer should they need him.

I spent the day resting and taking my teacher training course in Teaching Writing: Structure and Style by the Institute for Excellence in Writing. Hopefully my blogging will improve as a by-product, LOL! I'm excited to be preparing a co-op writing class to take place in my home.

Our family enjoyed watching the Lakers beat the Magic tonight to win the Finals! We don't watch basketball normally, but got into the Finals because it was a "local" team and the games were exciting!

I want to mention that we really love our new dining room furniture - thanks Allison and J.J.! I had the pleasure of sitting at it tonight with the family to eat Mike's gourmet open faced sandwich - grilled eggplant on toasted sourdough bread with pesto and mayo. He also prepared an extraordinary gourmet macaroni and cheese tonight for baking tomorrow. Check out the recipe folks - it's delicious and I can't wait to eat it! You'll want to make it for yourselves soon. I'm obsessed with cheese lately...could you tell?

1 Chronicles 29:12-14

Wealth and honor come from you;
you are the ruler of all things.
In your hands are strength and power
to exalt and give strength to all.

Now, our God, we give you thanks,
and praise your glorious name.

Saturday, June 13, 2009


Last night, Krista woke up with intestinal troubles -- fortunately nothing that would require calling the doctor, but troubling nonetheless. Krista didn't want to succumb to the setback, so she moved forward with a last-minute collection of items for the used curriculum sale today. The sale is a big event, and hard for her to think of missing. So I took her and spent some time looking over the educational treasures. It didn't take too long, though, before her condition caught up with her and we had to leave.

The problems didn't stop with intestinal trouble. She developed a headache that kept her laid out on the couch for the rest of the day. My mother had to leave once we got home from the curriculum sale (thanks Mom for coming up again!), so I took the boys out to do errands for the afternoon. Krista was worse when we got back, and the sounds of people in the house drove her off to her room. The headache became a migraine but by the time she recognized it, it was too late to fend it off with her anti-migraine medicine. The poor thing just has to try to sleep it off now.

I am in pain and distress;
may your salvation, O God, protect me.
I will praise God's name in song
and glorify him with thanksgiving.
(Psalm 69:29-30)

Friday, June 12, 2009


Hi again... it's Mike back to writing. Krista wasn't feeling as good today so I'm stepping up to do the daily update.

On Saturday, the Homesteaders are having their annual used-curriculum sale. Krista was hoping she would have picked out her items to sell last night, but she was too tired from all the activity she's been doing lately. Really it's been amazing how good she's done this week. This morning when she woke up she went right to the books -- pulling them off the shelf, pricing them out, and boxing them up. Three boxes!

Krista has been craving gumbo all week, but it hadn't worked out for us to have it until today. So this morning when I woke up, I went right to it, cooking the roux, frying the sausage, chopping the veggies, and loading it all into the crockpot. It's a nice meal to make for a day at work because it just cooks all day and you just add the shrimp and rice before eating.

It's been great having Mom around this week. She's been cleaning, cooking, shopping, picking lemons and oranges, etc. All the stuff that's hard for me to get to. Today she also took the boys to a birthday party and Krista to get some more fruits and veggies at Fairview Gardens. They were also going to go to drop off the books for the curriculum sale, but Krista was still wiped out from this week's activity so she just napped through the afternoon. Mom did some more laundry and yard work -- and I think that wore her out, too. Thanks Mom!

But [the Lord] said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
(2 Corinthians 12:9-10)

Thursday, June 11, 2009

God Loves Me, Therefore I Can Sleep

I'm really, really tired right now. I had less energy today overall just because of how much I've done in the last 3 or 4 days. I went out twice today on errands and spent a good portion of the day memorizing poems with the kids and doing a fun spanish class with them (La Clase Divertida). They loved it both of my new programs! I had a great time too. Problem is, I still have to go through my curriculum and books, pulling them and tagging them for a used curriculum fair this weekend. Tomorrow is the drop-off day. I also wanted to get the Crockpot Gumbo started tonight so I could just put it on for tomorrow. But this exhaustion has set in, which unfortunately means that Mike will probably end up doing it.

I'm really thankful to Monica Stanton for bringing us a wonderful black bean soup, salad and garlic bread! I couldn't have possibly made dinner tonight after my long day.

Mike's mom has been a big help driving me around. For instance today she took me to Fairview Gardens because I wanted to sign up for their Community-Supported Agriculture program for the summer harvest. I think I was missing some brain cell connections today due to the fatigue because I kept forgetting things like my wallet. It didn't matter anyway because the coordinator who I could sign up with wasn't there until 1 p.m. when the pick-up of harvest shares arrived. So off to the next stop, the pharmacy.

We stopped home for lunch and got back in the car to go back to the farm to sign up and get our boatload of veggies and fruits for the week. This time I forgot my grocery bags and my collection of strawberry baskets that has been growing for too long. Thankfully, they had Trader Joe's paper bags to use in lieu of our cotton sachels.

What incredible joy it was to smell all those vegetables and herbs wafting from the table! They'd been picked this morning so were not only organic, but incredibly fresh. We received 2 huge heads of lettuce, romaine and red home those went into 4 gallon-sized ziplock bags! We also received green beans, turnips, beets, dandelion greens, arugula, nectarines, strawberries, 2 kinds of squash, a huge head of fragrant basil, oregano and carrots. It will last us a week and then some! Though now I won't hesitate to eat a salad whenever I feel like it...sometimes I feel like I have to save the greens for dinner.

I signed up for CSA because we've done it before and it's a wonderful experience for the kids and for us too...being connected to the food that you eat, where it comes from and having it so fresh and full of nutrients is very rewarding to the soul. I am hoping the increase in our vegetable consumption will also continue me on the road to good health and help the kids not get sick as much since we'd been relying on fast foods and more processed foods then ever before. I highly recommend checking out a CSA farm in your area! You can search for one at the Local Harvest website

Off to finish watching the Lakers game, have a homemade milkshake and cull books before flopping over on the couch at around 10:30 p.m. I'll be too tired to make it to bed and will wake up after 1 a.m. to crawl to bed for a good night sleep.

Psalm 127:2

In vain you rise early
and stay up late,
toiling for food to eat—
for he grants sleep to those he loves.

Wednesday, June 10, 2009

UCLA Appointment, a Breeze

I'm not sure I've mentioned it yet, but I'm not using the wheelchair anymore. It's nice to have on hand for now since it's only been a week or two since I've gone vertical. There might be an occasion I'll need it if there is some major walking trip that I really shouldn't take on Disneyland or something, LOL!

So I went to my appointment today at UCLA. It was great walking all the way there from the parking lot for the first time. I then had to walk to the cafeteria, the long way around, and up 2 long flights of stairs which, until now, I'd not been able to do stairs. Though it did hurt my hip by the last one, I'm seeing major progress in all areas.

The doctor saw me and agreed with me that I'm doing very well...he could tell. The initial blood tests, just the CBC came in and showed my hemoglobin was 11 (12 is normal), my white blood cells were 6, and my platelets were 113,000 (working toward the 150,000 mark). Still waiting to hear back on my other labs, metabolic panel, thyroid, iron levels, etc.

How 'bout that L.A. traffic? What traffic? We have been experiencing nothing, but a breeze of a drive to and from UCLA. I told Mike's mom, who was surprised we were home at just 7 pm, that we are indeed blessed. Adam retorted, "they are super people." Maybe he meant we're like super heroes who fly above traffic, but he really is that sweet. By the way, Adam caught a cold last night so you can pray he gets over it quickly and that the rest of us don't get it.

Matthew 15:30-32

Great crowds came to him, bringing the lame, the blind, the crippled, the mute and many others, and laid them at his feet; and he healed them. The people were amazed when they saw the mute speaking, the crippled made well, the lame walking and the blind seeing. And they praised the God of Israel.

Tuesday, June 9, 2009

Solvang Excursion

How can I top yesterday's blog post? I mean, really. I've been feeling so much better lately that it couldn't possibly happen two days in a row, could it? Well, yes it could.

I told you we'd be heading to Solvang today. For those of you not local to Santa Barbara, Solvang is 35 min. away - not that far, but with the beautiful rolling hills and small mountains on one side and the ocean on the other as you drive up to Solvang, it seems like a world away. So at 8:30 we left to go to Paula's Pancake House for breakfast. Jan and I split the Paula's Special: Danish pancakes topped with fresh strawberries and fresh whipped cream. And we each had a Danish sausage. I don't like regular buttermilk pancakes, but I LOVE Danish ones. They are the size of a dinner plate and very, very thin. Afterward, we popped into Olsen's Bakery to get their amazing cheese danishes to bring home for dessert later.

Trevor didn't really remember being in Solvang much because he was very young then. So through his new eyes it was cute to hear him say, "this is an old-timey town." It's very European looking - a great place to visit!

We took in a little shopping to get a birthday present for a friend, stopped at the bank that my mother-in-law needed to go to (our excuse for getting up there in the first place). And to top it off, I had just enough energy to visit our old friends and neighbors, Donna and Gordon O'Neill. I was excited to find them so well and so happy. I could sense that they are walking closely with the Lord and how great to hear of their many blessings since my last visit. I would have taken a photo of these folks, but my cell phone camera just died on me this month. Bummer.

Boy was I tired when we left at 12:30 pm! We drove home and Jan made me a grilled cheese sandwich for lunch (my favorite). Did I tell you I was tired? Exhausted is more like it! But, what is so great is that there is a reason I'm tired...I did a ton! It beats being tired for no reason and sitting on the couch all day. I couldn't sleep when I tried to lay down I got up and talked to a friend on the phone and went on the computer. Then it was time to make dinner. Yes! I made a meatloaf which turned out pretty good. Mike's mom made corn on the cob and salad to go with it. NOW I'm exhausted, and you can probably tell by my poorly written blog post tonight. So I'll sign off for now because I'm doing the "exhaustion ramble."

Isaiah 40:27-29

Why do you say, O Jacob,
and complain, O Israel,
"My way is hidden from the LORD;
my cause is disregarded by my God"?

Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

He gives strength to the weary
and increases the power of the weak.

Monday, June 8, 2009

"It's a New Dawn, It's a New Day...'s a new life for me, and I'm feeeeelin' goooood, at least that's how the song goes!" That was my Facebook status this morning. I woke up feeling better than I have in awhile. So I got a shower first thing (so as not to let it wear off). I wasn't sure if the "feeeeelin' gooooood" part would last the whole day. If you're unfamiliar with the song "Feeling Good" please click on the link to hear it and get it stuck in your head forever too - it's a favorite of mine!

In fact, I did feel good for the most part. There were 3 or 4 distinct times of sleepiness, nothing a quick nap didn't fix. I was able to clear 2 clutter spots and make lunch and clean up the kitchen a little, aside from interacting with my kids all day and spending time on the computer.

My hip still hurts a little but it was better than yesterday. I am going to wait to start my "power walking" until that is all the way healed.

Here's a bit of hilarity for you...I got my doughnut this morning! I suppose after reading yesterday's blog Mike eased up on the restriction and took us all to Eller's Donuts this morning to pick out our favorite fried sugar bread delicacy. That's what I thought anyway before I actually choked down that doughnut. I bought a plain doughnut and a glazed one because I couldn't decide, so I ate exactly 1/2 of each to make up a whole. Bleck! Mike was right. It wasn't worth it, but having waited 7 or 8 years since my last doughnut, I had to find out for myself and put that craving to bed! Now I'm on to the next one: Solvang's Olsen's Bakery's Cheese Danish AND while I'm there, Paula's Pancake House Danish Combo (Danish pancakes w/strawberries and a Danish sausage for my needed protein) YUMMMM, now this craving is real and that food would be very's only been about 4-5 years since I've been there so I remember! The good news is Mike's mom is here and has to go to the Union Bank of California and the only local location is in SOLVANG! Yeah, baby, breakfast tomorrow is in Solvang!

Thank you Jenny Sutton and family for the wonderful Sutton Family Tacos and yummy salad tonight! You are so faithful to bring us a weekly meal. We appreciate you and congratulations again to Philip on his graduation this weekend!
Pray for me! The life and death stuff is easy to trust God and live for Christ. It's the day-to-day mundane of life that is really where the struggles lie. You know that to be true for yourself, don't you?

1 John 2:15-17

Do not love the world or anything in the world. If anyone loves the world, the love of the Father is not in him. For everything in the world—the cravings of sinful man, the lust of his eyes and the boasting of what he has and does—comes not from the Father but from the world. The world and its desires pass away, but the man who does the will of God lives forever.


Sunday, June 7, 2009

Finishing the Race

I'm back! I thought I would try blogging again since I'm feeling stronger that way lately, and it will give Mike one less thing to do so late at night.

After Carolyn Aijian's good advice yesterday about not doing too much too soon, I decided to stay home from church today to recover from yesterday's graduation outing. That 4-hour outing left my muscles and joints aching today. So, Mike took the kids to church without me. And, no, he did not come back with any doughnuts from Eller's...this is becoming contentious, let me tell ya! :) I've been encouraging his perspective to change...he allows me french bread (a white bread) and french fries (fried food), so what's wrong with 1 doughnut (fried bread) which I haven't had in years? Oh, but to his credit, he is slaving over homemade chicken and dumplings this afternoon and's a long recipe!

My good friend Lisa Weaver from Colorado Springs called today and I'm SOOO excited to find out that their family is coming out to northern San Diego County next weekend for a whole month! We are hoping to visit them while they're here. Pray I'll be strong enough to do that, not this Saturday, but next. That's a good 2 weeks to improve.

I was really encouraged by Lisa, because right before she called I was havng a complete crying fit and feeling just horrible inside. Sometimes in my daily battle, I feel so encouraged by the Lord, especially when so many people share with me how much they've been touched by my life and how God is using our situation. Wow, I KNOW that it is God doing it through us because, I'm really not all THAT, if you know what I mean. It is a daily battle to
remain in His will because I could easily give up and totally focus on myself. I even do it from time to time. Let me share with you a story that blessed me yesterday as I tend to be one to start things and not finish's my nature.

Yesterday's commencement speech was given by a man who reminded the students about the importance of living DAILY for Christ. Yes, we begin strongly, but oftentimes we don't finish. When he was in high school he joined the track team, and the first time he went out the coach said before he started the 5 mile race, "Are you committed to finishing? Because if you're not, then don't even begin!" The speaker said, he hesitated, never having to make a "back-end" decision, only making "front-end" decisions until now. He means most decisions are made to start something, but we never think about deciding to finish. Well, the coach said, "It's a split-second decision, what will it be?" He chose to commit to finishing. And, while he ran, feeling miserable for it and watching others fall to the wayside "getting rid of their egg salad sandwiches," he knew he'd finish that 5-mile run only because he'd committed to doing so from the beginning.

So, now I'm committing before you, to finish the race of recovery, no matter how ugly it gets!

1 Corinthians 9:23-25

I do all this for the sake of the gospel, that I may share in its blessings. Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever.

Saturday, June 6, 2009

Graduation Day

We had another bumpy start to our day today. For some reason, Krista has been craving doughnuts, especially to celebrate graduation day. I didn't want to have to deal with the consequences that are bound to come from that kind of indulgence, so we skipped that idea. By the time we settled on scrambled eggs, her energy was going downhill, so Krista had to rest before she could shower and get ready for the graduation ceremony this afternoon.

The graduation ceremony was pretty full, but we actually got there early enough to get a good spot in the back, just in case we had to leave early. Amazingly, Krista made it through the whole thing. It was great to see all the Homesteader kids all together. It funny that we don't notice the changes in the kids we see all the time throughout the year, but when you see them all together you really get a sense for how they are all growing up. Congratulations to all who graduated!

Krista was really happy to see everyone there. And instead of celebration doughnuts, she got to have a slice of graduation cake. She looked great and was really moving around well, but she was really faking how well she felt. Actually, she overdid it. By the time we got home, her head, hip, and joints were throbbing in pain. I gave her an ice pack, and we laid down to take a nap while our boys played with the neighborhood kids. Carolyn Aijian rescued the evening by bringing us a salmon dinner. She was very encouraging to Krista, too, reminding her that she was doing great and didn't need to push so hard to get to a "normal" level of activity. Thanks Carolyn!

Great is the LORD and most worthy of praise;
His greatness no one can fathom.
One generation will commend Your works to another;
they will tell of Your mighty acts.
They will speak of the glorious splendor of Your majesty,
and I will meditate on Your wonderful works.
They will tell of the power of Your awesome works,
and I will proclaim Your great deeds.
They will celebrate Your abundant goodness
and joyfully sing of Your righteousness.
(Psalm 145:3-7)

Friday, June 5, 2009

Old To New

Last week, our local oncologist set Krista up to get lab work done on the weeks between our visits to UCLA. I had forgotten to put this on our calendar, and I didn't realize that until last night. The good thing is that it is a "standing order" so we have some flexibility in getting it done. We planned on going in today.

It was a rainy morning, though, and that seemed to make getting going in the morning a little tough for Krista. The kids are graduating tomorrow -- from 5th grade and 2nd grade. Monica Stanton was taking our boys to their graduation rehearsal (thanks Monica!), so Krista didn't feel any urgency to get going until after they left. We got off to a late start and managed to find our way to the new lab that the oncology team is referring their patients to.

Going to a new location always seems to take longer, and this time was no exception. They couldn't find the order, so we had to wait a little extra while the oncology team faxed the order over. At least the facility and the staff were nice, though -- and we were the only ones there, so we didn't have to take any extra precautions with staying away from coughing patients. Since it's the weekend, we won't be getting the results back until Monday at the earliest... and then Wednesday we'll be heading down to UCLA to do it all over again.

Krista took a day off from the steroids today to see if it helped. Unfortunately, it didn't. In fact, she was feeling nauseated tonight so it looks like she's going to need to get back to a daily dose. If the steroids aren't the problem, it's possible that she's getting too much thyroid, since that can cause some of the same symptoms. We'll have her level checked when we go down to UCLA.

Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!
(2 Corinthians 5:17)

Thursday, June 4, 2009


It's been three days of improvement now. Krista stood up a lot and felt good with it too. She put some music on and swayed around. She was able to make lunches and take care of some things around the house. It's good to see her taking more independent steps. She even started taking her Shaklee supplements for the first time since the transplant.

But it hasn't been all positives. The steroids that she has been taking have been making her have extreme hunger swings which sometimes hit soon after eating. Even after being stuffed by the In-n-Out Burgers Katherine Marton brought us for dinner (thanks Katherine!), Krista still had an incredible burst of starvation hunger about a half-hour later.

The steroids can also play with her emotions. This evening she was reading about some of the long-term probable effects of the transplant -- cataracts, nerve damage, sunburn sensitivity, etc. So when she developed some small mouth sores tonight, it triggered a flood of fears. She said that she feels like a prisoner in her own body. She just wants to be normal and to be able to help others rather than always be focused on herself and her problems. I reminded her that today was about the most normal day she's had! Oh, those steroids... it's probably time to start taking a break in between doses.

Have no fear of sudden disaster
or of the ruin that overtakes the wicked,
for the LORD will be your confidence
and will keep your foot from being snared.
(Proverbs 3:25-26)

Wednesday, June 3, 2009

Getting Out

Krista is continuing to improve, and today she was able to have an outing today at Linda Berkley's house. Linda came over to get her and the boys late this morning and they stayed there until late in the afternoon. They brought our laundry with them and Linda did it at her house while they visited. The boys had a great time playing with her 5 boys and 1 girl. They have a large house with a large backyard, so there was plenty of room for them to run around an play. After all that, Linda also provided a pea soup dinner for us tonight too! Thanks Linda for a fantastic day!

Rhonda Gordon wrote Krista today announcing that she mentioned Krista in an article that was published in the March/April edition of Mary Pride's Practical Homeschooling magazine (on page 40). The article was a day in the life of a homeschooler, and it was a day that included a visit to see Krista in the hospital just after she got out of the ICU. She made mention of our blog in it, so we may be getting some more traffic on it since it is a magazine with a world-wide distribution. Thanks for letting us know about, Rhonda!

Give thanks to the LORD, call on His name;
make known among the nations what He has done.
Sing to Him, sing praise to Him;
tell of all His wonderful acts.
Glory in His holy name;
let the hearts of those who seek the LORD rejoice.
Look to the LORD and His strength;
seek His face always.
Remember the wonders He has done,
His miracles, and the judgments He pronounced
(Psalm 105:1-5)

Tuesday, June 2, 2009

Down Time

I didn't blog yesterday, partly because nothing much changed. Krista felt terrible with the aches and pains but OK otherwise. I had to work in the afternoon and evening and I didn't realize until I was headed to bed that I didn't blog. Oops!

Krista's been using her down time to make plans for homeschooling next year -- mainly researching curriculum again. She's really excited about Andrew Pudewa's Excellence In Writing for language arts because it ties in with Artios' approach really well. Krista also learned about BrainSpark from a PBS special about the science of learning. BrainSpark is a program designed to cross-train the brain in the four ways that people relate with new information: memory, attention, processing rate, and sequencing. These might be some useful tools to add to our schooling efforts.

Yesterday, the Suttons brought us a tritip dinner with a big salad. Today, the Onishuks brought us an amazing soup that Lori's mother made. Lori called it a potato soup, but it was much more than a normal potato soup. The creamy broth was full of chunks of carrot and bacon, and there were Spaetzle in addition to the potato chunks. It reminded me of those wonderful Swabian dishes we had when we were in Germany. Yum! Thanks for the delicious meals!

[Jesus speaking] "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
(Matthew 11:28-30)