Tuesday, November 10, 2009

What is Critical Illness Polyneuropathy?

Now I know the reason for all the weakness I've had and why I've hit that plateau over the summer. I seemed to be recovering with leaps and bounds in the spring through mid-July then wham! I hit that wall. Since then I've struggled with stiffness, lack of feeling in my feet and hands and muscle weakness. All of this increases with fatigue and the length of time I've been standing, walking or even sitting!

As a result of the numbness I have taken a couple falls because I didn't realize my feet and bottom of my leg had no feeling when I got up quickly to answer the door or chase after an animal. Dr. Schiller at UCLA suggested that I see a neurologist about it. I was slow about doing so and then I started getting migraines once a week. After experimenting, I'm attributing the migraines to a side effect of the medication which I take twice a week. Changing the days I take it to days when I am not under a lot of stress with driving to and fro has really helped, but it was the migraines that led me to call and schedule that neurology appointment with my old (meaning former) neurologist, Dr. Delio. He's so great! He remembered me, every detail from how we first met eight years ago when he suspected I had lupus (which he was right) to my first time with leukemia three years ago.

After hearing what my transplant experience was -- from the multiple organ failure and coma to the long stay in ICU and the hospital in general -- he put me on the table to do some tests on my nerve function. First he tested my muscle strength by doing resistance pushing against my legs, feet and hands. Then he took the sharp end of a safety pin and proceeded to stab me with it several times starting at the tips of my fingers and moving up my arm. Didn't hurt a bit. Could hardly feel it even up my arm. Then he did the same with my toes up to my ankles. Couldn't feel it, but when it got to my ankles it hurt which is probably how you would feel if you felt that prick on your toes. So I was pretty numb in my toes and feet and hands and arms. Next he took a 2-pronged "boingggg" fork to see if I could feel the buzzing made by the "boingggg" when he hit the fork and it kept ringing. He put that up to my knee which was overly sensitive and to my feet which I couldn't feel - very strange! Next he put the other end of the fork on my foot and asked if it was cold, but I couldn't even feel it. Then he showed me how cold it was on a part that can feel it! Brrrr... Then he tested my reflexes. Doctors always do that so quickly I don't know what they find.

Dr. Delio pronounced that he was pretty sure I have "Critical Illness Polyneuropathy" with leg weakness. It will take a year to recover from this. Doctors aren't sure the cause exactly, but it happens to patients who are critically ill who have organ failure and have been in the ICU awhile or the hospital a long time. It could be medication-related or from the sepsis that occured or the cytokines from the inflammatory process during that time that crosses the blood-nerve barrier or something like that. At any rate, when you're that sick the nerves get sick too. It's like an infection of the nerves. That's how Dr. Delio put it. He's also testing my B12 and Folic Acid levels to rule out another cause for my neuropathy, but was pretty sure he's got it right.

I asked if it's too late to repair the damage, and the verdict is that the sooner I were to start treatment the better, but it's never too late to make progress. So, as soon as possible I'll begin neurology-based (as opposed to sports medicine-based) physical therapy twice a week for six weeks initially. I asked him, "So just moving around the house, standing to cook dinner, and things like that won't help me get better?" He confirmed that indeed I need rehabilitation for this kind of problem. Since summer, I've wondered why I couldn't seem to get better and why I couldn't stand or walk for more than 10 min, and will I feel like an elderly person for the rest of my life (and if so, what will I feel like when I'm truly elderly!?) It sure is nice to know that I can get physical therapy now without wondering if I really need it. Until now I thought of it more as a luxury. I mean c'mon! They have a swimming pool and everything! I know God will provide all we need so I'm not going to worry about the added expense of yet another treatment. Please pray for His timely provision as well as healing for my nerves and muscle strength. Thank you!

Quick UCLA update as well: I had my monthly check-up last Friday at Dr. Schiller's. I was disappointed at first because he'd passed me off to his nurse practitioner. But she was good enough that I got over that pretty quick. I have a LOT invested at UCLA and want my money's worth if you know what I mean! So the good news was that my bloodwork was good, no infections showing which was confirmation that the antibiotics had been sufficient in knocking out my kidney infection from a couple weeks prior. I also have been on Tamiflu since Friday because Adam came down with a fever, runny nose, aches, fatigue, headache and eventually cough. Dr. Schiller prescribed it for me as a preventative.

During my time there, low and behold, who should come see me and Mike, but Russ Busby, an old chum from high school whom I've reconnected with via Facebook over the last year. I went to high school in Chantilly, Virginia and he was visiting Los Angeles over the past few weeks. After having followed our blog, and because of the miracle of Facebook, (yes miracle!) Russ visited me and got to meet Mike for the first time. We were able to catch up a bit, give hugs and even pray together before he had to leave. I love Facebook!



After my appointment was finished, we headed home, but first we called our dear friends Gene and Jeannie, parents to our dearest friends from Colorado Springs, Lisa and Rick Weaver! Gene and Jeannie live in the most amazing house in Westwood right next to UCLA. They opened their home to Mike and his mom during my time at the hospital for anything they needed, laundry, food, a shower, a place to stay. They are very hospitable and giving people. I am so blessed to know them! It was my second time visiting their home myself, but the first time I was able to climb their steps into their home! We had stopped there on my way home from UCLA the very first time I was discharged in March, and I couldn't walk yet and the stairs were too steep to attempt. This time I got to enjoy their lovely home from inside and spent a good hour getting to know these wonderful people. Gene is a crack up with all the practical joke stories we got to hear. I'll share them with you if you ask me personally, but I'm not blabbing them on the internet for everyone which I'm sure Gene will appreciate! Thanks Lisa for sharing your dad and stepmom, and we can't wait to see you when you visit Coronado!

I hope everyone has a WONDERFUL Thanksgiving this year. We'll be spending the holiday with Mike's parents in Carlsbad. Lord-willing we'll also be visiting with Lisa and Rick in Coronado. We are thankful for every day and I am putting together a gratitude journal of 1000 things to be thankful for - from the obvious to the small - especially focusing on redeeming the ugly in life by being thankful anyway. For example. #1 fallen leaves, #2 scribbled on white boards, #3 fingerprints on windows, etc. Now, you try. And the reason for my gratitude for things that don't seem so great at the time? It's based on John 13:7, which reads, "Jesus replied, 'You do not realize now what I am doing, but later you will understand.'"

Another new tradition we're doing this year is a Thanks-Giving Tree (Click here, but come back) From that blog, I downloaded a template of a tree to print out on cardstock and colored leaves of different kinds to print out. Each person will have his own tree. Each day we'll write one thing we're thankful for today and on another leaf one thing we gave of ourselves to someone else. At the end of the month there will be a whole tree of ThanksGiving which we'll all read to each other.

What are some traditions you'll be incorporating into your celebration this year? Comment below.

Here's the verse for today's blog. I thought it appropriate to illustrate to whom we are to show true thankfulness, true THANKSGIVING! As a certfied foodie, I confess that in the past I have lusted after many a Thanksgiving dinner. When you are carving into your turkey this year, will it be the prayer of thanks that is motivating you or the greed of the feast?

Luke 17:11-19

Ten Healed of Leprosy
Now on his way to Jerusalem, Jesus traveled along the border between Samaria and Galilee. As he was going into a village, ten men who had leprosy met him. They stood at a distance and called out in a loud voice, "Jesus, Master, have pity on us!"

When he saw them, he said, "Go, show yourselves to the priests." And as they went, they were cleansed.

One of them, when he saw he was healed, came back, praising God in a loud voice. He threw himself at Jesus' feet and thanked him—and he was a Samaritan.

Jesus asked, "Were not all ten cleansed? Where are the other nine? Was no one found to return and give praise to God except this foreigner?" Then he said to him, "Rise and go; your faith has made you well."

Monday, October 12, 2009

No Such Thing As Normal

It's that time again...one month since I last wrote! No news is good news, right? We went to UCLA last Friday for another quick and uneventful appointment. My numbers are good, though I don't know why my platelets are hovering lower than normal last 2 months at 130,000. I'd like it to be at least 150,000. The doctor doesn't seem concerned by it at all stating that those numbers fluctuate greatly and it's not that far off, but still...I guess it's the perfectionist in me that wants to be in the normal range!

Life is settling in now that school and soccer are underway. The Fall chill is finally upon us! We've already had one family outing to Lane Farms pumpkin patch which lies a stone's throw from our house (though we have to walk around the one row of houses to get there since going through our neighbor's backyard & secret Lane Farms entrance just isn't cool.) Really looking forward to Christmas when we take nightly walks to enjoy the old-fashioned Christmas ambience & all the joy that is just milling about as people pick out their tree. Enjoy the pics from yesterday's excursion! (See all the pics on Facebook under my photos tab and the album "October 2009.")

While the kids are at Artios Arts Academy today I've been trying to get housework done. I'm so inspired and motivated! I went for it and did quite a bit. I thought it was a lot until I sat down and looked at it--one would never know I did anything! My body feels like I worked for 6 hours straight, but in reality not much got accomplished. Sure I folded and put away 3 loads of laundry, picked up, swept & vacuumed, and wiped down the table, but my mother-in-law could do that in 20 min and still change sheets, pull weeds and trim bushes for another 3 hours! And she's 69 or 70! These are the things I wrestle with the most these days: my limitations, feeling like I don't measure up b/c I can't do it all, as well as the physical stuff of medication side effects, nerve damage (my feet especially hurt with this and also when I look down I get a jolt of buzzing electricty from my neck down to my toes which is really uncomfortable), and GVHD (Graft vs. Host Disease). So those are all things you prayer warriors can be praying about this month!

Today I realized something that might be a cause of the frustration I've had periodically throughout my recovery so far. All this time, I've been treating the bone marrow transplant like it was a temporary inconvenience, as if I'll get this thing done and get back to my normal life. Problem is I didn't take into consideration that life will never be the same. There is no old normal life to get back to...I've been fighting giving up of my old self, my old plans, my old dreams. I really need to focus on the Lord more and let His ways become my own--no more fighting! Living in the now is what's most important. Being present. I may never get back to "normal" (at least that is how it feels to me.) Is suffering my ministry? I think it might be, at least for now. I will try my best not to complain anymore! I gladly receive all of this and give it up for the sake of knowing Christ and the power of His resurrection more.

The following is my life verse and was written in an inscription in the first Bible I was given by a family who was sharing with me when I was not a believer in my need for a savior. Charlie wrote, "My prayer for you is that you may know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead." Within 4 months I had moved across the country and God spoke to me in very powerful ways, both supernaturally and through that Bible! I accepted Christ in September of 1992. Who knew at that time how meaningful these verses were to become to me. I've copied the verse in it's context below. So Charlie's prayer for me in 1992 is my prayer for you today!

Philippians 3:7-11


But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ—the righteousness that comes from God and is by faith. I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead.

Saturday, September 12, 2009

To Be Glad of Life, (plus a humble request)

I thought I'd take the time to update you about my regular check-up I had at UCLA on Friday since so many are curious about how it went. Two hours down with no traffic until we hit the Wilshire Blvd. off-ramp due to the September 11 memorial festivities that were happening at the nearby veteran's cemetery. Only 15 minutes late because of it, I was able to sit and do my devotional while I waited for my name to be called in for blood work. Mike had just dropped me off because we had Headband with us and they took him for a stroll through Westwood and walked around the campus a bit before heading back an hour and a half later to pick me up.

After a quick blood draw, I went back out to find my seat taken so I moved across the room to another location and finished my with the Lord and writing in my journal. Then I pulled out a cookbook, Make-a-Mix , and offered an empty seat to a lady nearby so an elder couple could sit next to each other. After a few minutes, the lady commented on the recipe book and I shared it with her thinking she was interested in food, but quickly realized she was not a foodie at all, but just wanted to talk to someone. She was there because of a mysterious illness and was feeling frustrated and nervous about it. She goes to UCLA for iron transfusions because for some reason she is unable to retain iron in her bone marrow and has suffered with this for 3 years with other doctors who remain mystified. Now she has Dr. Schiller and I know they'll figure it out - besides now I'm praying for her and God knew all about it! While we sat another young guy sat across from us and as soon as she got called in, he seemed eager to start a conversation as well. We hit it off talking about learning Japanese and other cultures. It was lively and I was disappointed it had to end when I got called into see the doctor.

The above scenario illustrates why, at this point, I decided not to get an iPod, even though Mike won a $50 gift card from his company the same day Apple came out with the latest iPod models which really tempted me. First of all, we can't afford something like that which is not absolutely essential to living, and then second, relationships. If I had an iPod, what happens, almost every time I visit the doctor's office, couldn't happen. Suddenly, I'd be unapproachable in my isolated world of music, video or gaming. Imagine all the people who would remain alone in their heartbreak or troubles that I'd be basically ignoring. I really could only use an iPod if I had car speakers for it to listen to music and podcasts, which would cost even more money. I'm not saying I'll never own an iPod, but I think I will only reconsider it when I am once again walking longer than 10 minutes or jogging again, and when we've gotten through the medical and prescription bills and property tax crisis.

I went in to get my blood pressure check (perfect), temperature (perfect) and weight (not perfect) ha--not perfect, but not bad either. My bloodwork was all normal and I only have to see him once a month now. I sat in the tiny treatment room waiting to be seen, and in walks, oh I forget his name, but he's the intern that sees me often before Dr. Schiller comes in. He interviewed me and then I heard him out in the hall filling in Dr. Schiller on what I said, minus my juicy details, all the good stuff that makes it sound much more interesting. Then I overheard Dr. Schiller remark, "Well, yes, she is doing remarkably well. Less than 10% of people who have been through what she's been through survive [liver & kidney] failure." He used bigger words - hematic failure and I forget the kidney term, renal or nephrotic? Anyway, it was just another reminder of how awesome God is and what a miraculous thing He did to keep me here, with my brain functions restored. I've been crying a lot lately about this. I'm not sure why.

I struggle with feelings of not deserving God's love for all He's done for me, while at the same time feeling a little envious of other Christians who have gone through the same thing with flying colors. I can be crying about the one and then crying about the other at the same time - bizarre! Either way, I don't get it, but I don't have to get it to know that God is an amazing God who has a wonderful plan for my life and is using all this for my good because I love Him.

I've also been struggling, (and I share these things so that you know how to pray for me), with, what I guess you could call, perfectionism. In my mind, I have all these grandiose ideas of how I need to take care of life - my family, church, friends, the home, school, exercise, eating well, etc. When I attempt to do these things I think I really need to do, I find I can't possibly do it all. It really is too much, but who doesn't feel that way? To me, this doesn't seem like too much in my mind. I'm trying to learn to be kinder to myself, but it's very hard, especially since we don't have the help we once had because I look like I've come so far and don't need help anymore. And I can't afford to hire help, so I'm feeling very blue lately that I can't get it all done. The areas I need help in are cleaning, organizing & yard/patio/garden clean-up. If you feel called to one of those areas and would like to help, I'd take you up on it! I just have a hard time calling up people and asking myself because, again, I look like I'm doing so well. Yet I've been struggling with fatigue and migraines lately and I'm trying to prepare for school starting Monday. I've also been experiencing new symptoms of neuropathy that my doctor would like me to investigate with a neurologist. My feet and lower legs go numb, as well as my elbow and other parts, but the feet is not good when it causes me to trip and fall frequently. I walk gingerly in order to prevent this, but with a tailbone injury I had a couple weeks ago, it's been hard to bend over to pick up things. This also makes it dangerous when I don't have a clear pathway!

Speaking of the tailbone injury...I forgot to tell you how I did that one. It was so hot a couple Saturdays ago, I was nearly delirious. The boys and Mike were out and ice packs weren't cutting it, so I decided to take a cold bath for the first time in my life. I turned the water on and left the room like I always do when I run a hot tub. I didn't realize the cold water comes out triple fast and when I returned that tub was overflowing! I ran in to shut it off, not seeing the 1-inch of water on the marble floor and SLIP, KABBAM, OW! I fell onto my tailbone and lower back and back then head all in one instant. My dog took off and I found him later in his kennel, head down. I told him he was not cut out to be a rescue dog after running off like that when I was screaming in pain and crying for help. Sheesh. Two weeks later and I'm still hurting and can't bend over or get up quite right.

Once we get on our new routine I think life will get easier. The kids are going to be at Artios Academy on Mondays from 8:30-3:30 so that's the day I'm planning my productive days of cleaning as well as planning, and being extra nice to me. Again if you have any time on Mondays to spare, I'd love the company and extra hands, even if for just an hour. Feel free to email me or call. Love my dear friends, yet hate to ask :(

This was so special to me I wanted to share it with you and keep it somewhere I could re-read it anytime I need the reminder! This is exactly what I've been feeling about life after nearing "the threshold" earlier this year. Take it to heart and rejoice! We have an awesome God!

To be glad of life, because it gives you the chance to love and to work and to play and to look up to the stars; to be satisfied with your possessions, but not contented with yourself until you have made the best of them; to despise nothing in the world except falsehood and meanness, and to fear nothing except cowardice; to be governed by your admirations rather than by your disgusts; to covet nothing that is your neighbors' except their kindness of heart and gentleness of manners; to think seldom of your enemies, often of your friends and every day of Christ; and to spend as much time as you can with body and spirit, in God's out-of-doors--these are the little guideposts on the footpath of peace. ~Henry van Dyke

About Henry van Dyke:

Born November 10, 1852, in Germantown, Pennsylvania, and educated in theology at Brooklyn Polytechnic, Princeton, and Berlin, Henry Van Dyke worked twenty years as a minister, first in Newport, Rhode Island, from 1879 to 1883 and next in New York until 1899. His Christmas sermons, his essays, and his short stories made him a popular writer. His poems reveal a classical education as well as a common touch in matters of faith. He became Professor of English Literature at Princeton in 1900. During World War I he acted as American Minister to the Netherlands (1913-16) and then naval chaplain, for which he was awarded the Legion of Honour. He died April 10, 1933.

Colossians 1:10-14

And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, 11being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully 12giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. 13For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, 14in whom we have redemption, the forgiveness of sins.

Saturday, August 15, 2009

The Amazing, Disturbing, Yet Worth Celebrating News at UCLA Today

(Note: Many of you don't realize to click on the clickable links! Doing so makes these things make more sense - so be sure to click when you see a phrase underlined and in a different color!)

This is a longer post, but it's because there's almost a month since my last one, but there is lots of fun & interactive stuff to share...be sure to read to the very end to see a smathering of photos from today too. Oh, and feel free to comment...I miss those things, and when i see my blog all comment-less I hear Barbara Streisand & Neil Diamond singing, "You Don't Bring Me Comments Anymore" - it's sick I tell you! "...you think I could learn how to tellllll you goodbyyyyye...," but no. You have the power to stop this madness, so comment if you enjoyed today's post :)

Before I get to the juicy stuff though, let me "quickly" update you since the last post. Let's see, there were no new ER visits thankfully...oh wait, just one, but it was not stem-cell transplant related! I overdid it and was more fatigued than usual, when I got up off the couch in my UGG boots parallel to the thick-pile floor rug which my foot kind of stuck to as my right ankle rolled outward causing me to fall hard on my right side and hitting my noggin on the way down on the corner of a table. By the way, now I know why they call them UGG boots - ugh, that hurt! The pain from the ankle and the snapping sound is what caused me to fall even harder because in the whirlwind I was more concerned about my ankle then the rest of me and wanted to grab it. Mike saw me fall and exclaimed, "Who cares about your ankle, how's your head?!" Of course, this happened on a Sunday and since I heard a snap, we thought it best to go to the ER to get x-rays. Turns out there was no fracture, just torn ligaments so I received an air cast to protect the ankle from sideways motion and had to stay off of it until I could walk on it without pain. Swollen, painful and bruised I had to lay it up for 48 hours, icing frequently, but I started taking my Vivix again and things started healing rather quickly so that by today I'm able to walk on it for the most part, but can't bend it just yet and cannot drive. It still gets painful if I've been on it too much and I go back to the crutches for that. Thank you Pauli for letting me borrow the crutches!

That was the most exciting thing that happened this month as far as "emergencies" were concerned. That was the end of a very physically active week for me. I said I had overdone it and here's how - I'd been doing well going on walks with family and the dog, and Mike seemed tired and I thought he needed a break. So, waking up early one morning (6 AM) I decided to take the dog on a bike ride before anyone woke up! That way Mike could have a day off from walking or riding the dog. Riding the dog, meaning he takes him on bike rides in the morning usually. Riding the dog is easy with our K-9 Bike Jogger we scored off Amazon. It's the best! I have to look down to see that the dog is still there sometimes because there is no pulling you over on this thing - you just can't even feel it, even when bunnies & squirrels cross your path!

I rode to the bike path, then thought I'd go as far as the bridge because, so far, it was easy peasy which surprised me since I haven't ridden a bike in eons and I'm pretty unconditioned right now. I decided to go to the next milestone, then thought ohhhh Goleta Beach is just a little further, I can do it! I've so desperately wanted to go to the beach and introduce our new dog to the beach too, but being sun sensitive right now prevents me. It was so early though I went for it. As I neared the beach, I started tiring, and realized I'm going to have to get home too, woops! It's 4 miles to the beach and that means 4 miles back. I took a break at the beach and let Headband play. He loved digging in the sand - wish I had a picture. Since it's a leash-on beach, I followed the rules and kept him on the billyclub-style k-9 jogger leash I detached from the bike. Here I was standing, facing the dog, relishing in his delight of digging to China when BOLT, he takes off between my legs to run like a greyhound in a moment of glee. You guessed it (remember I was facing him, his head is down, he's digging to China) and I'm pretty close to him with my legs spread apart bent over a little, so I got flipped! Sand is soft thank goodness! And on top of that I lost multiple layers of skin on my thumb in two places along with a blister. There was not a soul at the beach that early, so off-leash he went for a spell because I wasn't willing to do anymore gymnastics and wanted to keep my remaining dermal layer.

Oh, I failed to mention that at the beginning of our bike ride, we were just heading down the bike path when a man and his two dogs, 1 an australian shepherd, came out from the wooded area off-leash (there are signs, people, that say clearly leashes are required along the bike path). The aussie came charging and circled us so fast that it caused Headband to screech to a halt and jump to the other side of the bike in some supernatural way, causing me to fall over and get a nasty scrape up and bruise on my right shin! Here I am holding my leg on the bike, my dog is tangled and my bike is still keeled over while the guy is yelling for his dog to come and reporting "he's good, he's good, he just wants to play!" I'm wincing and moaning (appropriately so, not putting on a show mind you) and he offers no assistance, no apologies, no "are you ok?" - nada! Can you believe it? I'm learning a lot about human behavior through owning a dog let me tell you, LOL! That was at the beginning of my journey and I kept going! Then the beach incident, then getting home was tough with the hard bike seat and the 8 miles total - at least it's flat! I was just a-prayin' at the end, "I can do all things through Christ who strengthens me! Please Jesus, help me get home...almooooost therrrrre!" So you can see why in the end, I really overdid it.

When I got home, it had been an hour and 15 minutes. Mike asked, "where did you go?" When I told him he was surprised and said he's never gone that far! Ha...I really am over-ambitious; I just can't help myself! I didn't stretch that much either, but afterward had a Physique shake which rebuilds muscle after strenuous exercise. It's what I used when I was running and it works great - I had no sore muscles after this experience (and none when I began running for the first time and was running a half hour every other day, amazing huh?) If you are into running, biking, or other forms of regular workouts, you'd love Physique too. Sidenote: My Shaklee business has been running on its own even through the transplant and recovery and now that I'm that I'm getting stronger I'm able to do a little more work on it, just a little. I love that you can still earn an income despite being laid up with a great company like Shaklee. It keeps getting better too so if this economy has you down, let me know if you'd like a part or full-time opportunity to be in business for yourself, an award-winning business that pays, doesn't lay you off when you get laid up with a major illness or other major life event, and has quality products that really make a difference in the health and lives of others, as well as taking better care of our world just contact me through my website.

It took me two days to recover from the beach bike ride and that's when I rolled my ankle. I think fatigue played a factor. Funny thing is at the ER the nurses and doctor looked at my ankle and then remarked, "oooh I see where you got it here too when you fell," referring to the bruising and scabs on my lower shin from the bike accident. I had to tell them, "No, it's been a busy week."

I know, you were hoping for a "quick" update before the juicy details of today. I'm getting there, but thought you'd enjoy that fun little story. Ok, so with my ankle laid up all week it was impossible to get anything done. Also Mike had major deadlines at work this week and worked late and so we were slightly behind. I caught up on the basics on Thursday, but packing for the trip and preparing for a get-away weekend seemed impossible. My friends Carisa and Glen are on a road trip and offered their house to us for the weekend, even letting us bring our dog! Thanks guys! So that meant packing for one more kid and giving him a nice dog bath on top of our regular packing, laundry, food prep, loading the car, etc, etc. We managed to get it all done making us quite late for our 1:15 blood draw appt - missed it by an hour, but was pretty much on time for the doctor appointment which follows it by 1 hour.

Here's the funny part! I called the office when we left Santa Barbara because it was noon and we were stuck in the worst Montecito construction traffic! Knowing I'd be late, and not wanting to lie about the reason (that's always tempting) I just told her we were stuck in traffic and it looks like we'll miss the blood draw appt. The nurse then asks, "Oh, where is it so we can know for our other patients who might be stuck in the same traffic." Oh nooooo! She's going to know we just left our house at noon in Santa Barbara on a Friday when it takes 1 1/2 hours to get to UCLA with no traffic! I replied sheepishly, "Oh no, we're too far away for it to affect your patients." She really wanted to know..."Well, where are you right now?" Ohhhh noooo, face turning red, I admitted VERY sheepishly, "Ssssanta Barbarbara." LOL...Then out of embarassment, I had to explain in detail how I sprained my ankle causing us to be behind and getting a late start and blah, blah, blah, blah, blah...oh yes, and the traffic! Oh man, I felt caught, but I didn't lie :) Just humiliating and the best part is it all turned out just perfectly. The doctor had cancellations today and we had an easy time just going right in lickety-split.

Ok, ok, ok, NOW the juicy part! The doctor had a couple interns come in with him to meet me and I always get to hear his glowing reports in the hall before they arrive. He reports to them, "Come in here. You have to meet her. It's truly remarkable where she was and where she is now." He explains to them my complete liver and kidney failure and brain involvement where I was in a coma for at least a week, how my bilirubin was like 28 or something off the charts, and how I've bounced back from this near death experience. But here's the interesting part. He shared with them and tells me how he is so amazed at how bad off I was. He shared with me that when he would come to the ICU to check on me and manage my care, the ICU doctors would stop him and advise him to give up, to do no more for me and let me die! They had no hope and thought it best to just end it by not intervening anymore! Can you believe that? That's the disturbing part. The amazing part is that this devout orthodox Jewish man, my amazing Dr. Gary Schiller, boldy retorted, "I will do everything I can and let God decide." I know that God would have His say either way, but I am so thankful to have had the best doctor who also had the wisdom to know how to make those kinds of decisions.

I had to ask him if the ICU doctors REALLY said such a thing, and he said, "OH yes! It's really a myth, you know when you hear a guy say, 'they kept my grandma alive against our will?' Well, those are exceptions to the rule in ICU...most ICU doctor's philosophy is to just end it as quickly as possible, get it over with." Now looking back, I see why he wanted to keep me out of the ICU and why when I was there, he was trying to get me out as soon as he could! When I told Mike all of this news in the car on the way out, Mike asked, "Then why did ICU want to keep you so badly?" If you were reading my blog back then and recall, I was better enough to get back to the Bone Marrow Transplant floor, and wanting to be released, my doctor (Schiller) wanted me back there, but the ICU doc was arguing with me about it, almost to the point of tears (the doctor not me!) pleading with me to stay with, "what can they do for you up there that's so great that we can't do here?" It was really weird! Upon that display, I was like, get me out of here!!! She even came up to my floor in the middle of the night to "check" on me and the nurse put her in her place. Go back down to your den woman! (My thoughts.)

Anyway, since I was in a coma I had no idea how really close to death I was. I asked Mike tonight at dinner if he thought I was going to die. He said, "I just knew you weren't, like God told me. Without that I couldn't have gotten through it." Everyone thought I was going to die. Even Dr. Schiller wasn't so sure, telling Mike, "I've done all I can, now it's up to God."

On a lighter note, after our long journey today, and getting to our guest house, I had the most delightful visit with Amy, Carisa's Muslim sister who lives upstairs with her husband Igbal and 2 girls. They have a playdate every Friday so there were a few kids Adam and Trevor enjoyed playing with while the moms and I had a great time interacting over the amazing Indian and Bangladeshian food that the ladies had made. I love cooking ethnic food but haven't adventured into this area, so this foodie learned a lot today from some extraordinarily beautiful women in their gorgeous traditional clothing. One woman made "Chaklay" (not sure how to spell it), but it's really cool rice flour, chile powder, salt, pepper dough you put through this "Chaklay" maker that is a brass cylinder with disks (kind of like a pasta maker would have), then you fry it up real crispy. It is like a snack food you would get in a bag, but homemade and quite addicting. I wish I'd taken a photo of the maker and the dish. I love how you can get the real food that people eat in their homeland from what they cook very simply in their own home. You just can't find that in any ethnic restaurant--it's very special.

I rested from 7-8 pm and then Mike, the boys and I headed out to eat at our favorite Torrance eatery, Hanks Pizza, Deli & Restaurant. This place has been around since I was a kid and beyond that! I have been going here since I was Adam's age, maybe younger. And in all these years I've only ever ordered 1 thing...Hank's Vegetarian Pizza - it is the BEST pizza ever! What sets it apart is the eggplant and artichoke on it and the crust and the sauce and the cheese....heavenly! Well, tonight folks, because I'm living(!) I went big and we ordered the cannoli too! Now I understand, "Leave the gun, take the cannoli." Mmm mmm! Boy, I had no idea! Can you believe this was Mike's and my very first cannoli? I only learned what cannoli's were after watching Mario Batalli make this delicacy in Chefography (a new favorite show of mine). It didn't stop there folks, no! We were celebrating living again, so we went for it and got a slice of cheesecake, albeit small and split into four (I told a jokingly frowning Adam, this is a cheesecake petit-four!) But the owner graciously decked it out with fresh blackberries and blueberries just like the old days...it was fabulous! Nothing has changed about this place, the food, the people, the atmosphere, the classic Italian music and Frank Sinatra tunes, even the prices!!! Great prices! If you are in the Torrance area you must stop in at Hank's Pizza for a wonderful dining experience.
Now you've gotten all the juicy details from dog gymnasticsc to near death to amazing cannoli's, and can rest until the next episode in my funtastic recovery adventures! I look forward to our next visit, in person or otherwise! Until then, grace and peace be with you... Krista

P.S. Do not fear death, unless you don't know the Lord Jesus Christ...but if you do, you have NOTHING to fear. Is Jesus pulling on your heart strings today? Email me if you'd like to talk about it with someone who cares at kristaenglish at gmail dot com

Job 14:5

Man's days are determined;
you have decreed the number of his months
and have set limits he cannot exceed.

Psalm 39:3-5

3 My heart grew hot within me,
and as I meditated, the fire burned;
then I spoke with my tongue:

4 "Show me, O LORD, my life's end
and the number of my days;
let me know how fleeting is my life.

5 You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Each man's life is but a breath.
Selah

Trevor has dubbed this painting, "The Evil Chef" because of his long dubious mustache.

The photo of Headband wearing sunglasses was taken while he was sleeping in the car on the way to UCLA - only angle I could get.

This is the cutest pizza box you ever saw! If one could collect pizza boxes (the smell prevents), this would be the start of it.

Adam & Trevor at the fountain that I used to visit after I'd eaten when I was their age! So glad this tradition remains :)

Friday, July 24, 2009

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.


Wednesday, July 1, 2009

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.

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 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.

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.