After a Long Absence...

Now that the requests are coming in from all directions, it’s finally time to update you! It’s been long while since the last update for three reasons. First, back in November my doctor had reduced and taken me off of prednisone (a steroid that I took to keep GVHD (graft vs. host disease) at bay. It suppressed my immune system so that it wouldn’t attack my own body; Well, stopping the steroid caused the GVHD to get stronger. If you saw me during that time, my skin was so flaky that I couldn’t see through my glasses for all the snow! GVHD affects the skin on my eyelids, nose, face head and hands and anywhere skin meets skin at a crease. It is dry, red, stinging, and flaky. The skin will wrinkle before your very eyes as GVHD waxes and wanes. Lately on my hands it’s been actually separating causing little cuts all over. Ouch!

As I stayed off the steroid through the holidays, things got worse. I had a cough that would choke me just above the collar bone, so badly that I couldn’t breathe and ended up in the ER once because of it.  They called it bronchitis at the time, gave me cough syrup with codeine and an inhaler for the asthma part of it, but it never got better, only worse over the course of 3 months.  I would have the coughing attack daily, worse when I spoke for very long, and worse at night.  Daily or at least every other day I was throwing up from the out-of-control coughing.  They tested me for every virus out there and pneumonia too, but nothing ever showed up to explain it.  After ruling everything out, finally my doctor informed me that it was graft-vs-host again attacking my stomach this time causing the gasses from the gastric acids (say that 10 times fast) floating up and burning that place above my collar bone causing me to cough and gag and expel my dinner.  Easy solution though.  Back on steroids at 20 mg and double my Protonix.  Within 2 days I was almost 100% back to normal.  No more coughing, no more vomiting, regained my appetite and had super energy (love that!)  And bonus, all my horrible skin problems cleared up! 

Two weeks later the doctors want to start weaning me back down off the steroids because you don’t want to live on them long term.  It’s not a healthy way of getting your energy either even though I’m loving it.  So at 15 mg. I noticed right away the GVHD returning to attack my skin.  One problem is the weather has been so nice and I’ve had a ton of energy causing me to be in the sun too much (even 5 min. without protection is too much) and causing me to overdo it because of all this energy!  Both those things cause the GVHD to flare and combined with a reduction in the steroid dose I notice it.

The skin separating is the most painful and annoying thing, so I called my doctor one day to ask him about it and he informed me that I am going to have chronic Graft-vs-Host the rest of my life so I need to learn to tolerate some level of symptoms that are not life-threatening.  That’s a bummer, but a challenge I’m willing to endure while calling on the Lord for healing and restoration.

So being completely exhausted and sick (non-contagious) non-stop November through January was the first reason I couldn’t bring myself to blog.  The second reason is I’ve been living like never before!  Well, living like a normal active person as before anyway.

The third reason is a by-product of the second.  Because I’ve been living a full life, there have been SO many happenings, so much to tell you, so many amazing touches from God in our life I could hardly keep up on all of it to share with you.  I try to do a little through Facebook so if you are not a friend of mine yet on FB please add me so you can keep up and see all the wonderful photos I’ve been posting of life through these more energetic eyes.  It’s been a lot of fun to get back into photography, taking photos everyday and sharing the good ones.

In order to not bog down the blog with one giant novel, story after story of God’s amazing love, I will have to do a series of blogs – challenging myself to a daily blog again.  But give me some grace while my mom is here visiting starting tomorrow.  I’ll try to blog every other day for the next week while she’s here.  

Next post will be most interesting as I reveal the photo of me from 1 year ago (around Valentine’s Day actually) and show you a photo from today…shockingly different!  Until then, be at peace and know that God loves you no matter what your situation!  He really does.  Just turn to Him and ask Him to show you Himself today!

The reason I blog…

Colossians 2:1-3

I want you to know how much I am struggling for you and for those at Laodicea, and for all who have not met me personally. My purpose is that they may be encouraged in heart and united in love, so that they may have the full riches of complete understanding, in order that they may know the mystery of God, namely, Christ, in whom are hidden all the treasures of wisdom and knowledge.

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."

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.

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.

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 :)

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.