A Busy July = Fun, Sun and GVHD Symptoms

Lots of photos to share with you of our busy July! The flowers were a birthday gift from my dear neighbors and I love to capture them in a photo so I can keep them forever!

I just realized it's almost been a whole month since my last post, and so much has happened this month that it really deserves an update. July has proven to be my most active month by far! On July 3, my kids performed in a Broadway songs show then we went to De La Guerra Plaza for a "Tea Party" event. Afterwards we got ice cream which I found out I cannot taste, so why bother - first ice cream I've ever thrown away!

On July 4 we went to a friend's backyard BBQ. I was exhausted afterwards so missed the fireworks show in Goleta, but Mike took the boys for a fun time that night. Then, on July 5, I was still so tired and didn't have much appetite. I didn't eat until the afternoon and that evening, while I sat on the couch, distracted by the computer, Mike gave me two shrimp that became my demise. Within 2 hours my stomach was violently protesting, and I lost so much fluid out the forward and aft that I couldn't sit up any longer and Mike had to rush me to the hospital ER. They pumped me with IV fluids and the meds I needed to stop the severe stomach pain and I was better pretty quickly. I stayed overnight and was able to leave by mid-afternoon the next day. They ruled it food poisoning after determining there were no infections.

On Saturday, the 11th, the wonderful Steffen's had us over for my first birthday breakfast (thank you!) On Sunday, the 12th, my dad and his wife Martha came to visit for my and Adam's birthday. They took us to Paula's Pancake House for my birthday breakfast on Monday. I spent a lot of energy enjoying their visit by cooking, visiting Solvang, going out to eat, shopping, and even golfing (I just drove the cart), and of course there were our birthdays on Monday and Tuesday to celebrate. For Adam's birthday on the 14th, I made a great grilled shrimp and corn salad, topped off with a Royal Velvet cake from Anna's Bakery. Shrimp again. Within 2 hours, I suddenly had the violent gastronomical event happening again and I begged Mike to take me to the ER before it got as bad as last time! It was a good move. Again, I was helped and the next day able to return home in the late afternoon. The doctors asked me if my skin had been flushed when I was getting sick. In fact, it had been noticeably enough that I had mentioned that to Mike...all my skin was pink/red. That is a sign there was a lot of histamine in my blood, an allergy. Ohhhh! So that first incident wasn't food poisoning after all, it was an allergy to shrimp! Even last weekend, after an ice skating party, we went to TGIF's and I, of course, am staying away from shrimp, but almost every meal they have has shrimp. We ordered appetizers, and the nachos had grilled chicken on them. Later I was getting really nauseated in the order of the last 2 ER events, so I think that TGIF's probably grills its shrimp on the same grill as its chicken, causing contamination. When I realized this, I took a benadryl and went to bed - I'd also overdone it going to our ice skating party - I was in bed at 7 PM for the night! The benadryl seemed to work though so no ER for me!



The kids have been having a blast with our weekly writing class with 10 students at our house, golfing, bike riding to the beach with their dad a couple times, birthdays, ice skating, Cinderella rehearsals, and surf camp. Between that and the regular household chores, farm day on Thursdays, and looking for a good dog for our family, I've been quite tired lately. I also have been getting more sun than I probably should which is very difficult living in such a beautiful sunny climate. Getting worn out and too much sun has probably contributed to my GVHD (graft vs. host disease) getting worse. So we upped my dosage of prednisone to suppress my immune system more which I'll be weaning back down over the next several weeks. My doctor is pleased with the progress I've made and, at the last visit, admitted, "maybe we've been a little too hard on you," meaning he keeps pushing to cut down my meds and also expects me to not have all this fatigue and GVHD.

The wierd thing is at the same time I was having those stomach problems, which could have been GVHD-related, but we think is a shrimp allergy, my friend Terry who got his transplant at the same time as me, was also having the same stomach ailment symptoms I was having! His was a gallstone blockage and he's at UCLA having his gallbladder removed, bummer! At my last visit to UCLA, we were able to visit Terry and Monica as well as Elizabeth from Santa Barbara who is there for her stem cell transplant right now too. It was great seeing so many old faces from the nurses to the transplant coordinators, to the nutritionist who encouraged me to keep eating melty cheese, ha! There was a survivor's celebration which we were so late for we missed meeting my doctor's wife and son and hearing the speaker and all the stories. The speaker is an artist who published a book where he drew a picture everyday after his stem cell transplant. He works in Hollywood doing artwork for t.v. shows and movies and is very talented. Testing out my stomach on the way home, we stopped at Cheesecake Factory for a delicious meal that would have put me under if my problem had been gallstones! That was one full day and it had only been 1 day since I had been discharged from the hospital for the stomach ailment!

A few friends are taking me out to dinner tonight for my birthday at Fresco Cafe, one of my favorite local spots. Aren't they sweet? Tomorrow we're going to spend time with Trevor and possibly go looking for a dog some more. Sunday we have our friends from China visiting for church and lunch. And next week I'm going to try to get some good rest time in. My next doctor appt. at UCLA isn't until mid-August. I've been burning out on doctors visits lately so I'm glad for the break. I probably should get my blood work done next week and check in with my local oncologist just to be safe though.

I hope you all have been enjoying your July and I look forward to hearing from you soon! And thank you dear friends for continuing to pray for me. I'm tired and weak and your prayers are what keep me lifted up to win the battle before me.

Exodus 17:11-12

As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses' hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset.

Correlations from Les Mis - Must-Read!

It has been way too long since Mike and I had been on a real date. Long car rides to and from UCLA are great, but don't really count as a date night! But last night, we were blessed to see Les Miserables at Solvang's Theaterfest, a quaint outdoor theater we used to go to often when we lived in Buellton. Many thanks to Marilyn Seibert for not only feeding and watching my kids, but cleaning my floors and dusting too!

We saw Les Mis on Broadway 11 years ago, and it became my very favorite musical. While it impacted me then because of the powerful themes of unconditional love and redemption, grace vs. works, justice vs. forgiveness, and more, it hit me in new ways now because of all I've been through and how much more I could relate with the characters of Fontine and Jean Valjean!

When Fontine is dying in the hospital, she is lying on her bed and singing a song to Cosette who is not there. She is obviously hallucinating and the nurse and Jean Valjean know that she doesn't have long to live. Before, I just thought this was just a technique to show she's losing it and is about to die, but now I realize how accurate that portrayal is of someone whose body is shutting down. The very thing happened to me as I read over my blog and learn about what happened while I was "losing it" There was a time I was comatose, for lack of a better word, and just last week did I read up on what had happened. My liver had failed, my kidneys had failed, and the ammonia buildup in the bloodstream affects the brain, causing you to hallucinate. Like Fontine, I also "saw" my children and reached out to them and other "visitors" I thought I could see in the hall, crying because they were passing by without stopping or responding. By the way, there wasn't even a window in the door or the room so obviously I was hallucinating...but it was SO real, absolutely clearly real! So when I saw Fontine behaving just as I had been just a few months ago (!) I found myself bawling because of how thankful I am to be here, alive, watching my very favorite musical so relativey soon after my trauma. By the way, I didn't sing any songs on my deathbed, just the hallucinating part, ha...

Another moment for me happened at the end when Jean Valjean is at the end of his life. After all the good he'd done, saving and protecting Cosette and raising her "to the light," and showing the same unconditional love and grace he'd been shown to the officer who sought him his whole life when he could have killed him, and saving Maris anonymously to bring him to Cosette, we find that he still has not forgiven himself. Maris figures out that J.Valjean was the one to save him and calls him a saint for doing so, while Jean Valjean cries as if it is not true. I think we all go through that from time to time (especially if we've ever been through a life-altering experience). Going through leukemia and the harsh experience of a stem-cell transplant, close to dying a few times, and blogging about it, causes others to look at you like you are special...I mean, I would receive cards and emails daily that spoke so highly of me that it was painfully touching...I would cry as intensely as Jean Valjean was in that scene, "No, no, no, it's not true, I've done terrible things, I'm very selfish, I don't deserve this!" These emotions can be very powerful, but it's an itneresting dichotomy. Yes, you can do wonderful things in the Spirit when you abide in Him, but at the same time your fleshy desires fight within you like pride - the desire to be first, to be best, to be perfect, etc...for some the sin might be more overt or more hidden like lust, lying, gossip or addiction. Even if you don't commit overt sins, the temptations are still there which can be all Satan needs to bring you down emotionally. If he can cripple you in the mind, making you ineffective for the kingdom of God, you can bet he'll try to do it any chance gets. That's why it is so important to be in His Word, the Bible, praying to God unceasingly, and fellowshipping with others who would encourage you in the Lord.

There is so much more I could say about this story. If you haven't seen it I highly recommend it next time it is playing in town. If you are local, it will be at Solvang Theaterfest through mid-July. Tickets are still available.

Galatians 5:13-18

You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature; rather, serve one another in love. The entire law is summed up in a single command: "Love your neighbor as yourself." If you keep on biting and devouring each other, watch out or you will be destroyed by each other.

So I say, live by the Spirit, and you will not gratify the desires of the sinful nature. For the sinful nature desires what is contrary to the Spirit, and the Spirit what is contrary to the sinful nature. They are in conflict with each other, so that you do not do what you want. But if you are led by the Spirit, you are not under law.

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.

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)

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 fun...it'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.

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!