Sunday, September 16, 2012

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

Saturday, January 28, 2012

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 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 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: