Things that have helped me thus far...a very POSITIVE update!

Today is September 16, 2012 -- about 3 years and 8 months after my transplant. I write few and far between because I'm trying to live life to the fullest and don't always have a lot to say. Since my last post which was marking my 3-yr-anniversary I still battled fatigue, weakness and skin GVHD.

Recently, however, I've found some things that have really helped make a difference in how I feel, my healing and my outlook. I want to share them in order to update friends, family and followers as well as give hope to those who have gone through a bone marrow (stem cell) transplant or who are expecting to do so in the near future. If you haven't gone through one, but will be, you can re-visit this down the road as you have enough to deal with right now.

What I'm Dealing With and What Has Worked

Skin GVHD - Basically, it's the immune system thinking my skin (an organ) is foreign and it tries to reject it. There is dryness, peeling, red skin and some areas that separate where the skin folds come together (behind the ears, the nose folds, etc.) I've grown to tolerate this as I try to come down off my Cyclosporine. That's an immune suppressant that keeps it in check. The goal is to get off completely. The sun affects my skin and I'm supposed to stay out of it, but living in southern CA prevents complete avoidance. I try to remember to wear sunscreen, but forget to sometimes. I have one long-sleeved SPF shirt, but wear that only when I'll have to be outside for longer periods. A hat is necessary, and my prescription sunglasses make my eyes so happy. I can't believe I went all these years without wearing any! Moisturizing my skin really helps. I just need to remember to do it almost constantly! I keep trying different brands and as soon as I have a tried and true favorite I'll post the results.

Fatigue  - This is a biggy. When I speak of fatigue, it is unlike anything you've ever experienced. It's an exhaustion that feels like an insurmountable wall and it affects your whole psyche. It makes you feel like you can't do anything and then you can easily get depressed, feeling less worthy or valuable than those who seem normal to you. Even 3 years later, this was hitting me hard! Could it be because I have two kids? I don't think so. Here's why: I have gotten to the bottom of it and have found some things that have really helped!

First, as you have read before I had adrenal insufficiency. Everyone who has been through trauma, and doesn't seem to be recovering from said trauma, should get tested for this. Mine was so bad that it was adrenal crisis sometimes, landing me in the ER often. My doctors told me that once the adrenal gland is shriveled up, it can't be restored. I have a God who does the impossible though, so I did not think like that. Instead, I prayed. I also take the hydrocortisone at the lowest levels I can without feeling wiped out. In recent tests, it shows that the adrenals and pituitary glands are "waking up" -- great news!  So I continue on my hyrdocortisone and try to wean off slowly and I thank God for healing me in his timing.

Another factor that has helped was a lifestyle change--specifically, my diet. I had been eating whatever I want whenever I want post-transplant because I didn't want to "suffer" anymore. I had so much damage to my mouth and digestive tract that I had to eat whatever I could taste. That was cheese! Since I needed to gain weight too, I threw caution to the wind. Well, I gained all the weight I needed and then some. Once I got into that mode, it was hard to stop it. I became quite the food addict. Later, when I'd had enough, I tried to eat less or count calories, but that wasn't working for me. Then I read the book Eat to Live by Dr. Joel Fuhrman. He promotes a plant-based diet based on his extensive research and I am inclined to agree with his findings. I changed over to a plant-based diet and that's helped me feel a ton better. Dairy is a real problem for people like us and I have a lot more energy since getting off and eating a lot more fruits and vegetables, nuts, seeds and beans - lots of beans!  The fiber in this way of eating keep me feeling full longer, gives me more energy and the protein is easier to digest. If you have digestive problems, I highly recommend a plant-based diet and that book. As a bonus, I've lost 17 lbs since starting this in July and look forward to losing all of my extra weight.

Another modality that I'm finding to be a lifesaver is getting B-12 injections. My doctor recommended them to see how they'd make me feel since even people eating meat are often found to be deficient in Vitamin B-12 because of modern farming practices. The meat most people eat lack the bacteria that creates B-12. Apparently 30-40% of all people (not just vegetarians) are B-12-deficient! Well, he was right. I feel a lot more energy since starting them. I give them to myself with the prescription he gave me for the liquid vitamin and the syringes. It's super easy to give it to yourself in the upper thigh. The doctor started me on three injections three times a week to get me caught up and then once a week. The good thing is you can't 'overdose' on B-12.

In addition to the B-12, my doctor also recommended IV vitamins followed by 1-hour in a hyperbaric chamber with oxygen twice a week. The idea is that it will help circulation get to the tissue that's not getting it and healing will take place, damaged nerves restored, numbness improving, and more. Since we had over-estimated our pre-tax healthcare dollars I figured now was the time to try it. If we don't use all our money, we'll lose it. I'm thankful because without that over-estimating 'mistake' I'd have never tried this complementary therapy out of expense which is $100/hour.

I've done three sessions now and noticed improvement in my toes and feet on the first visit! It is working and I've noticed more feeling and my lower extremities feel stronger. This is so amazing to me and I'm very hopeful that it will be restored.

I take the IV vitamins as a way to bind toxins that are being released and flushed out of my system. Not sure how to quantify that experience except that again, I have a lot more energy lately and even though I felt like I was battling a garden variety cold, it never 'took' - yay for that!

Mobility and Strength - After muscle loss and nerve damage combined with the stress fractures from falling because of it, I was left me with a limp which you might only notice if you see me when I'm tired. I have felt weak in my ankles and feet ever since. Well, the hyperbaric chamber sessions have been helping with this IMMENSELY! I especially notice it now that I've started the Cancer Center's Well-Fit program through the Santa Barbara Athletic Club. Since I've started feeling my feet again, I feel so much stronger. The Well-Fit program is a 10-week cancer patient program to help those going through treatment to maintain their strength or those who have gone through treatment to restore their strength. It's an awesome program. We meet twice a week with a personal trainer in a small group and can enjoy the health club as a full-member for those 10 weeks. I started last week and have been going daily since. So far I've just been building up my cardio workouts and today I did a pilates class that was head-to-toe strengthening and stretching. The pilates felt fantastic and I felt so strong doing it. You'd never know I ever had the problems I've had. I waited these 3 years to do this program because I had to have enough strength and health to do it. Now I do and am only going to get stronger.

High Iron - Due to the number of transfusions I received over the course of my transplant, and the fact that the radiation put me into menopause (therefore no more bleeding), my iron stores are extremely high. That's no good for your veins, your heart, your brain, etc., so I have been getting phlebotomies, or donating blood that they throw away, to reduce the iron in my blood. I do it as often as I can without getting anemic. Once a week was too much. So now it's every three weeks and only that if my hemoglobin is above 12. Planning this through February. Next time I'm in for the hyperbaric chamber session, I'll ask my doctor if IV chelation therapy would help remove iron.  If so, that would prevent anemia.

What I'm able to do now

My kids schedule is rather busy for me, but with carpooling help and planning ahead, it's doable. It's hard to take on outside commitments other than what we've already got for church, school, sports and Boy Scouts, but we manage it well. I'm able to work out at a gym for 30 min. to an hour, garden a little, household chores for the most part, and shopping the farmer's markets for fresh organic produce. These don't seem like a big deal to you, but they aren't activities I could muster the strength for even a year ago. I also started canning, and do it in spurts and small batches when I have motivation, find a good deal on some kind of fruit or pepper and have time.

What I'd like to do, but still have trouble with

I still can't be in the sun, but I tried to go to the beach last weekend with the family. Even though I sun screened up, wore a hat, stayed under an umbrella and wore SPF bathing 'clothes' (I looked a little goofy), I still reacted to it in a way that made me realize it's not time to try that yet.

I'm still gaining strength and look forward to the day when I can run again, but that's really not possible at the moment. 

I look forward to having more stamina even though I am experiencing more energy lately. I look forward to the day my adrenals are normal and I can get off all medication. I look forward to the day when something 'different' or outside the normal routine doesn't throw my whole system out of whack from the stress of change. That's not my personality usually, but it's my body since the transplant.

I'd like to get rid of more of the excess that built up in my life during these years that got away from me, and welcome anybody who would like to help. Too much stuff! I used to have a regular routine of decluttering so it never got out of control, but of course, that wasn't happening over the past few years. With too much stuff I can't think as clearly and it drives me a little crazy. I just started selling things on Ebay and if you need anything, you can check out my sales -- search funds4recovery. I am getting rid of mostly books and curriculum, DVDs, household goods, home decor, some clothing, and who knows what.

I'd also love to travel, but find even trips longer than 2 hours difficult still. That might be different now that I'm feeling much better, but haven't tested it out yet because of the fact that change to my normal routine still sets me back at times. I'm enjoying feeling so good for a change in my normal environment!

Well, that's the latest from Lake "Woes-R-Gone", just kidding, I couldn't be more thrilled with the prospects for health and recovery and hope the Lord touches you, my reader, in a very special way in whatever way you need most. He knows your need and He cares for you intimately.

 “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”

 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”

 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”  ~Matthew 9:22-24

Happy 3rd Birthday to Me! A Transplant Recovery 3-Year Review

It's been three years since I received the life-giving stem cells from an umbilical cord of an Australian boy who would now be 13 years old, same age as my oldest son, and yet they'll never know this incredible story! The three years since the transplant have gone by so fast...oh yeah, I can say that NOW, but of course you remember how I moaned that first year! How slow learning to walk again felt at the time, but the progress was leaps and bounds looking at it from outside!

We celebrated last night at Hollister Brewing Company in Goleta.  Just mentioned to the waitress, Kelly C., that it was a special night when I asked her to mark the occasion with a photo of our family (without Adam who is at Jr. High Winter Camp at Hume Lake this weekend).  She surprised me much later in the evening when we ordered an old favorite dessert of mine which I haven't ordered in years, splurging since I felt a little deserving of it after all I've been through, and she came out with it like this with a candle and told me that it was on the house, courtesy of Hollister Brewing Co.!  That was our first time there and after the great service, the waitress making me cry and the super duper hamburger and creative beer on tap.  What, you ask, is creative beer?  Well, let me share!  I had a 10-oz Admiral Browning - listen to this description: "finished with Verve coffee from our friends at The French Press and Ecuadorian cocoa nibs...chocolatey notes and rich, fruity, jam-like overtones..." yeah, it was creative and exactly as described!  Ok, got sidetracked in remembering our great evening.  Now back to the real post...

Since the Santa Barbara International Film Festival is in town this week, and I've always longed to go, but never have, I thought I'd share the following 3-year-mark update in "awardesque" language.  Hope you enjoy it!  Be sure to comment and say hello at the end of this post to let me know you still read these things and do you like Hollister Brewing Company as much as I do after my first visit?!

Mike, me (with bronchitis!) and T-Man (A-Man was on a jr. high retreat at Hume Lake)

First Year Post-Transplant - 2009 - Winner of "Most Difficult Year" in the Physical Category

First day home after 3 months! The boys were 10 and 7!

Having lost so much of myself through the process--my hair, voice, tastes, nerve sensations, skin elascticity and moisture, my glands (including, but not limited to saliva, pituitary, and adrenals), some liver and kidney function, and my muscle which inhibited my ability to talk, walk, run or jump. Most of my functions and hair and even glands and abilities have returned. I am still weak in muscle because so much of it was lost and the recovery has been very difficult to return to exercise having lost that muscle, plus gaining weight from the meds and lack of normalcy has meant a loss of just my old self. My kidney and liver haven't returned 100%, but they are at good levels with no major long term damage. I still can't run or jump, but I seem to be always improving a little bit more each year. To know that I was practically paralyzed when I left UCLA in March of 2009 and now anyone who doesn't know wouldn't know unless I told them is amazing to me and nothing short of a miracle. I have had to re-learn so much and accept a new normal and I keep learning and accepting all the time.

Second Year Post-Transplant - 2010 - Winner of "Most Difficult Year" in the Emotional Category

"I look good from the outside when people see me..."

This year marked more grieving as the long-term aspect of recovery became a reality. I realized there was going to be a chronic nature to my suffering that I wasn't quite ready to accept. I still believed I could run again...like soon. If only I could try harder. I now had to keep grieving the losses and embrace the new normal like never before. Even more difficult as support of friends and family dropped off, which is understandable as people get on with their lives and see that I too am getting on with mine. I look good from the outside when people see me because I only venture out when feeling good. When not seen though, there's usually a reason and it's a quiet suffering one goes through. Asking for help at this point is next to impossible since it's not so obvious why I would need help being over a year since the transplant. I grieve my body, my abilities, my old dreams, loss of friendships or what felt like closeness of friends, and even the spiritual intimacy I had with God as I clung to Him during that year of crisis, but let go a little when things improved some and death was not imminent (or apparent because we never know when we'll be called Home). However, with great difficulty comes great reward and I've seen God bless me so much with new dreams, new purpose, a new body (not my favorite version, but I'm alive), new opportunities, and even some new acquaintances and friendships to add to my old ones which are not forgotten thanks to Facebook!

Year Three - 2011 - Winner of "The Most Difficult Year" in Mixed Bag Category

Acupuncture at NIH in Bethesda

The first half of 2011 was immensely challenging with my health being very poor and living with the constant mystery of it all. I didnt' realize then that much of my fatigue, pain and stomach problems were related to adrenal insufficiency. That adrenal problem was still landing me at the ER once a month when it turned adrenal crisis, yet I still didn't know it was adrenals! They fixed me up with fluids, anti-nausea, anti-pain, and steroids shots and I was as good as new to leave a few hours later. I called the ER my pit crew, nothing to fear. I suffered greatly with the stomach issues though and wanted to get to the bottom of it. So in May I went to the National Health Institute (NIH) to join a study on Graft-vs-Host Disease (GVHD) to find out what symptoms were from GVHD and what weren't! Come to find out much of my problem was medicine-related and I only had GVHD limited to my skin organ and my mouth. At that point I still didn't know what caused my stomach issues. By the time NIH was done with me, they'd reasoned that they did as much to me as one can take with tests 8 hours a day 5 days in a row. I was cut, poked, photographed n*u*d*e (I never mentioned that!), cut some more, poked again, and again and again, MRI'd, hooked up to machine after machine, and yet, they never got to my stomach! So as soon as I returned to Santa Barbara I saw a GI doctor who looked at me inside from both directions and concluded it was NOT GVHD of the stomach. Finally. I had ruled out everything except Adrenal Insufficiency and that was it. Immediately off Predinisone which was a real source of problems too from moon face to breaking both ankles and now taking a little bit of Hydrocortisone...I felt like a new person! That was June.

The second half of 2011 was markedly better with more energy and determination than ever. This relief made way for new dreams which include:

• full restoration of my health (not there yet!)
• to get off all meds
• to lose the post-transplant weight (I've lost 15 pounds in 12 weeks and continue to go)
• to begin exercising more (have since Xmas, but taken a break to recover from a tough case of bronchitis)
• continue my ministry of hope and encouragement (I shared my testimony at Believing Woman and have been asked to speak for about a half hour at a MOPS--Mothers of Preschoolers--meeting in April!)
• put together a book of this journey, maybe an inspirational devotional for those who suffer - if you have ever published a book and can mentor me as a ministry opportunity, contact me!
• have more adventures with the boys
• help others find joy in their home school experience through my consulting services, my blog and future ebooks (Since the transplant, I was certified as a LearningSuccess™   coach in order to transform the lives of children and young adults with the principles that have helped me so much!)
• simplify - get rid of excess and create more room and time for others
• oh, and incidentally, go to SB Film Festival...maybe this is my year! Just threw this one in for fun since technically it is something I've always wanted to do and it ties into my 'theme' well.

Thanksgiving Day 2011 -- Praise God!  We are so thankful!!!

Feeling so much better from July through December allowed me to take on many more activities and adventures and found myself getting more infections as a result.  As I write this I still have bronchitis and have been pretty sick all week...sick since Dec. 25 actually which is over a month ago!  I have to continue to keep learning how to balance the new me and the remnants of the transition me that is still immune-suppressed.  I have to remind myself not to get complacent about hand-washing (I stopped asking people to wash their hands when they come over, but I'm re-instituting that policy!)  I have to keep learning how to balance the no-energy me with the energetic me and the desire to live a calm and relaxed life with my desire for adventure, social activity and service to others in ministry and in business !  I know there is a better balance.  Seeking the Lord first will only help me to find tune my compass and live with God alone as my True North.  I like how God says it in Isaiah 48:17 --

I am the LORD your God, 
   who teaches you what is best for you, 
   who directs you in the way you should go.  

Say hello and let me know if you still read my posts...and do you like Hollister Brewing Company?...and do you want to help me publish my journey into a devotional or other book?!!  Please engage in the comments section - I'd LOVE to hear from you!


UPDATED to add this video...visit www.bethematch.org to find out more on how to donate your baby's cord blood if you are pregnant or will be.  The same website is your source for information for becoming an adult stem-cell (bone marrow) donor for someone waiting for a life-saving match! Here's the video, "Give Birth to Hope" that explains the importance and miracle of cord-blood donation all so well: 

Long Overdue Update: Believing God More!

I have been so super busy that I haven't had a moment to update the blog in a couple months! Quick update on Maria, the Russian orphan with down syndrome that our friends the Zuzunagas are adopting and which I posted about earlier when we were helping to raise funds for the adoption. Well, they are embarking this week to return to Russia and bring her home! Her adoption went through last week before a judge and everything went smoothly thanks to the prayers of many.

I continue to be healed. At one point I had given up hope that I could ever be 100% whole again with the strength and abilities I once had. Since then, I started attending a new ministry which was launched recently by Naomi Van Wyk called Believing Women. It's a wonderful gathering of beautiful women, inside and out, who love the Lord and each week we worship Jesus and are given a great message of encouragement to encounter the Living God and awaken to our true calling, purpose and destiny.

You can find them on Facebook and at believingwomen.com We meet twice a month, and despite my busy schedule, it's the one thing I make extreme effort to attend because who wouldn't want to encounter the Living God and be filled in a deep and meaningful way? The Holy Spirit is definitely present and going there affects me as I learn to BELIEVE God more and more and see Him do big things in my life following that belief. Wow.

So, I started attending that and decided I had faith in God, but I had lost my belief in the fact that He does want to heal me. Whether it is immediate, over time or once in Heaven, He WILL heal me and it is way more possible for him to do so when I am believing than when I'm not. Believing him prepares me to receive it. So that's what I did. I asked Him specifically for strength and healing. I believe it. That week I was completely motivated to begin the journey I need to take for weightloss. A scary venture since the whole reason I had gained so much weight in the past 2 years was due to comfort. I had been in so much pain and suffering that food was the only physical pleasure that relieved it, even for 10 minutes. I became addicted and now I'm at the point where I'm totally unsatisfied with the results of that addiction. I had believed the lie that it didn't matter, that it feels good and that ignorance is bliss. Well, time to go back to what worked for me before which was the Prism Weighloss Program, a Christian-oriented program of transformation of beliefs in order to restore you to the true you. There was no group meeting in my town so I created one and put the word out. I believed I would have 5 members and thanked the Lord for it before I saw that reality. Faith is believing in what we can't see, right? Well, God came through and moved 5 people to join within a week. We have been meeting for just over 2 weeks now and it's going well. It's a 6-week phase so I'll update you at the beginning of Phase 2.

The other way I saw God moving in my healing was when I started feeling motivated to take stairs and park further away instead of relying on my handicap placard all the time. It felt great to be able to do 3 flights stairs, twice and quickly, as I had been fearful that I couldn't do one. Past experiences do not dictate what we can do today. We have to put the past behind us and stop listening to the lies.

I also started exercising again on a fitness trampoline. I was enjoying it very much and on Saturday, tried to do it quickly in between activities and landed wrong, injuring my knee enough that I have had to take a break. Once it's healed I'll be back to my regular exercise routine. It was a lot of fun!

That's all for now...Be blessed today knowing how much Jesus LOVES you and if you are at the end of your rope and have lost hope, perhaps God has allowed this circumstance to give you the opportunity to turn to Him, now that you realize you can't do it on your own any more.
1 Peter 5:5b-7
“God opposes the proud
but shows favor to the humble.”
Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Video Update: Both Hands Project

Last Saturday, our family worked with a team of 15 to undo 20 years of dust, grime and broken things in and around the mobile home of Louise, a 90-year-old former missionary who has no family. It was a blessing to be a part of something bigger than ourselves and to know that this could help the Zuzunaga family bring home Maria, a Russian orphan with down syndrome home sooner than later.

From Gentry Zuzunaga:
It really was a great experience as we were able to share God's love for this really needy woman. I am so amazed at all that God has done during our adoption process, including the Both Hands project. Because we chose to answer God's call to adopt, He has also given us the opportunity to minister to other people, including Louise, who we might otherwise, not have met. We serve a really BIG God and I'm so glad He can see the BIG picture because mine is definitely too narrow.

Please watch the video of our project and prayerfully consider a donation to the cause of bringing Maria home to her forever family. Funds are coming in so slowly for this family and the longer we wait, the older Maria gets. She is 4 years old right now. By 5 years old, the orphanages send these wonderful children into institutions for the mentally ill. It's not a pretty picture, but you can make a difference in the life of Maria today. The donation information is at the end of the video. James 1:27 Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.

Big Update! Light at the End of the Tunnel!

I do realize that I never updated you after the NIH trip to Bethesda, MD.  It was such a rough recovery after coming home that I was just too sick to do so.  As it turns out my adrenals were shot and I had nothing to withstand the stress of travel.  So daily I laid on the couch moaning in stomach pain, and fighting nausea, many times vomiting and diarrhea.  After 2 months of this, I ended up in the ER and explained that I thought it was an adrenal crisis and to give me a hydro-cortisone shot which indeed helped stop the situation.  This after having had my stomach and colon scoped just to make sure this had not been a GVHD attack.  It wasn't.

Photo of me getting acupuncture at NIH in Bethesda.  First time :)  Since coming home I've had a very good acupuncturist work on me.  It's actually quite relaxing after the initial pokes!  A TIME magazine feature on chronic pain noted that the only effective alternative therapies for chronic pain were physical therapy, massage, acupuncture and yoga, and biofeedback, as well as two Chinese herbs that were found to be more effective than a rheumatoid arthritis medication. The names of the herbs elude me at the moment, but you can find more info at the link to the article.


So despite the hardship that was going to NIH, the resulting information and clarity was helpful in that they showed me what was and what wasn't GVHD in the body.  I have GVHD but limited to my skin and oral mucosa.  That is great news!   All the other stuff I've dealt with over the last 2 and a half years has been due to medication side effects and adrenal insufficiency.  Not so great, but something we can work with and hopefully overcome.


So ever since my birthday, I have felt like my old self which is really saying something since I just turned 40.  My energy is so much better and after some regular acupuncture and massage I have been regaining my muscle activity and sensations in my feet.  I started walking and am utilizing my former walk-to-run program which I invited everyone who wants to join me (we're just starting Week 3 now, but you can join anytime and start at Week 1)...I made a Facebook Page which has the schedule for the program and other tips and encouragements along the way:  Join my Walk-to-Run in 18 weeks group on Facebook  


The other great news is now that I'm feeling better, we're able to serve the Lord in new ways that I didn't think possible just a couple months ago.  Friends of ours from church, named Gentry and Luis Zuzunaga, are adopting a 3-year-old girl from Russia who has down syndrome.  They've fallen for this sweet, adorable child named Maria, and feel God is calling them to bring her home.  Since we cannot adopt at this time ourselves, we would love to do everything we can do live out the verse in James that says,  "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

What better way to do that then to help out a 90-year-old woman with her home repair needs while raising money toward the $20,000 needed to bring Maria home.  Mike, Adam, Trevor and I plan to do just that.  We're teaming with the Zuzunaga Family and a ministry called Both Hands (one for the widow and one for the orphan).  Please consider sponsoring the English Family in our project to help Louise, a local 90-year-old woman who served the Lord many years as a missionary and who has many home repair needs to be attended to by our team.  The money raised will go to bring Maria home to the Zuzunaga Family.  To learn more about this project, about Louise, Maria and the Zuzunagas, as well as making a donation to support us visit: http://bothhandsfoundation.org/luis-and-gentry-zuzunaga.aspx  - Your prayers are very much appreciated!  

P.S. Some of you will be receiving a letter in the mail with our flyer and a section to cut off and send in if you'd like to support us in this ministry. If you want to support the Zuzunagas through us, but don't receive a letter, you can do it through the link above. It's all to bring Maria home and help Louise!

UPDATE to Up, Up and Away!

A quick update right before I head out the door--My corporate angel flight got cancelled last minute which at first made me think my plans with Kelly for the weekend were doomed.  Then I searched and found one last ticket on a US Air flight from LAX to Richmond which took me into Richmond at the same time and day as originally planned and for only $445 round trip after taxes.  The blessing of all of that was a dear friend popped by and dropped me an envelope...a gift of $200 to put toward that airfare!  Amazing.

Then I was kind of scrambling to find hotel in Bethesda during the Mon-Fri time I'd be there...close enough to get shuttle service and not need a car.  However, so many things were booked and most hotels were $250/night and up!  This morning though, I called the International Guest House and talked to the inn keeper. It's run by a church group, is a bed and breakfast and is only $40/night.  Imagine my delight when he said he had just one room for me and would actually be moving me into another room mid-week b/c they're kind of booked.  It's truly amazing.  They have international guests and group breakfasts, and at 9pm they sit around this great old home and have tea and cookies and conversation.  I'm so looking forward to the experience!  I've read great reviews of this place and it's only 4 miles from the White House and on the bus route that can take me to NIH in 30 min.

So that's all for now - going to L.A. right now to enjoy Cinco de Mayo with my friends the Dahls.  And head out to the airport early early to see James McMillan, Mike's best friend from high school, who lives in Charlotte, NC where I'm flying into...he's flying in on the same airline at the same time from elsewhere and we'll meet for coffee at the gate before flying out again 40 minute later!  Then off to Richmond to stay with Kelly for the weekend and her Dad in Centerville (my old home town) on Sunday night...Sunday Kelly and I are going to visit our old stomping grounds :)

Love to all!  Krista

Up, Up and Away on a Corporate Jet to the East Coast!

Hoping for a sweet ride like this one!

I was researching treatment options for chronic Graft-vs-Host disease which followed my bone marrow transplant and ran across a study being conducted at the National Institute of Health in Bethesda, MD.  It's a historical study, but because GVHD affects all areas of the body inside and out, there is a team of specialists in every field who I will meet with over four days and receive all kinds of tests...CT scan, MRI, echocardiogram, pulmonary, dermatology, biopsies, oral, gynecological, etc.  They meet together as a team when we're finished and decide the best treatment options for me, write a report and send it to me at home for my doctors.  

It's a great opportunity to get everything looked at in one shot and get the cutting edge options that are available to try.  The great news is that the flight out there is free for me as it will be on a corporate angel flight which is a network of Fortune 500 companies who've donated their extra seats when they happen to be flying from your area to where you want to go if you're a patient going to an NIH-sponsored treatment center.  I think NIH counts!  :)  

I couldn't plan the trip because it is just what comes up in the system right before you are supposed to go.  I can't tell them what day I want to go or pick the city of choice.  But, the great thing is God is in control and cares about these details for me.  As it turns out, I will be flying out of Long Beach this Friday, the 6th.  It seems earlier than I'd plan because my appointments don't start until Tuesday, the 10th.  However, it happens to be flying into Richmond, VA, home of my best friend from high school, Kelly Koch Jones.  That right there is Providence, my friends!  We're going to have a wonderful weekend together before I go up to Bethesda on Monday.

I don't have a return flight home yet, but that will surely come up just right and just in time.  I am all for adventure and this whole trip sure fits the bill!  I'm going to relish in it for a week even though I'm going to miss my family terribly.   I was hoping to bring Mike and the boys since I have a seat for a companion to go with me, but the corporate jet rules are no children under 21 unless they're a patient.  And with all their grandparents gone on their own vacations, and therefore no childcare, Mike is staying home with them.  That's alright...we'll go again in the future when they're older and we can do it as a family and see more, but free would have been nice too!

As it turns out I'll be staying in a hotel near NIH so I don't have to rent a car (hopefully).  NIH reimburses up to $50 a night for hotel and $8/day in food.  That's will feed the rats of NIMH, but not me and only rats would stay in a $50/night hotel!  The only hotels in that area that are available are $200 a night so please pray for provision for this as we are not in the green yet. 

I'll take photos of the trip and try to update you on what it was like to be Queen for the day...riding VIP on a corporate jet -- don't I feel like all THAT!?  Can you tell I am a little excited? 

This is my theme song for the trip: Oh Virginia by Blessid Union of Souls - so great!

I'll be meditating on this verse as I fly from the west to the east coast even though I know that the Psalmist is referring to a much wider span!  High in the air, I will feel His love envelope me as I imagine how small I am compared to God and His love as I'm whisked across the sky...may you be caught up by Him wherever you are!

Psalm 103:11-12

For as high as the heavens are above the earth,
   so great is his love for those who fear him;
   as far as the east is from the west,
   so far has he removed our transgressions from us.